Biodiverse Resistance

The end of the Ouch! forum, and thoughts about online community

2011-06-13T02:04:00.001+01:00

The news has recently been announced that the BBC Ouch! messageboard will be closing next month, as part of a wider reorganisation of the BBC website (which in turn appears to be motivated primarily by cuts to BBC funding). I have very mixed feelings about this - the BBC Ouch! site was my first real point of entry to the disabled people's community, and directly instrumental in both my development of a "legitimate" political identity as a disabled person and in connecting me with people involved - and thus enabling me to get actively involved myself - in disability rights activism, including the Disabled People's Direct Action Network. When the Ouch! forum first started, it felt like an incredibly vital and vibrant community of (mostly, but not exclusively, UK-based) disabled people and allies, discussing political issues, analysing TV and other pop culture through a disability lens, and forming community that extended (although i didn't get involved to that great an extent in that part of it) well beyond the internet and into the "real world" - many lasting friendships, and possibly even long-term relationships, were forged through it, despite the BBC-imposed restrictions on posting any sort of personally identifying data (which people often managed to get round through posting links to their blogs or other sites, or arranging "Ouch meet-ups" at "real-world" disability-related events (such as London's Liberty Festival, which i believe was founded around the same time as the Ouch! website).

(Lisybabe, lilwatchergirl and The Goldfish are among those other (ex-)Ouchers whose blogs i'm aware of. I believe that Screw Bronze, Rolling Around My Head (formerly Chewing the Fat) and the now inactive, but still online, Gimp Parade are all other blogs that i discovered through the Ouch site, all of which in turn led me to many other disability blogs that i read and follow now. There are also several other people who i now count as friends in "real life" who i originally met, directly or indirectly, through Ouch.)

However, there were a lot of very problematic things about the Ouch forum - as well as the BBC-imposed restrictions, which steadily got harder to get round over the years as moderation policies became stricter, there were many posters with strongly regressive views (some of whom were probably just trolling, others of whom seemed genuinely politically opposed to the idea of disabled people's community), and an anti-intellectual and anti-political community attitude which, while never universal, was present to some extent from the beginning, and gradually got stronger and stronger over the years, particularly in the form of opposition to "argument" or discussion of disagreements and the idea that, as a community, the forum ought to be "supportive" of its members to the point of refusing to problematise anything, but to play a "support group"-like role of "listening without criticism" - which is something i've never got on with in pretty much any context, and found particularly frustrating and irritating in this context. Over the 5 years or so that i regularly read the Ouch forums, most (though not all) of the more politically/analytically-inclined posters drifted away, and (at least from my perspective) the quality of the discussion - or at least my interest in it - declined to the point where i found attempting to seriously express my opinions there impossible (which, incidentally, was one of the things that led to me starting this blog). There was also rampant abuse of the "report post" system (by which anyone could click on a button to report a post by someone else as "offensive" and get it automatically "hidden" until it was reviewed by the BBC moderators, who often permanently removed even posts that had no "offensive" content).

I think the "last straw" that made me decisively stop actively participating in the Ouch! forum was the increasingly patronising "concern for welfare" attitude of the BBC moderators increasing to the extent that any frank discussion of issues like depression, suicide or mental health impairments became pretty much impossible, as any mention of certain "keywords" would result in automatic posts from the moderators appearing and urging people to contact "professional" helplines rather than discuss such things online - even if the discussion was a political one about (e.g.) the legalisation of assisted suicide. I think (although here i *might* be getting confused with another forum) that a regular poster was banned for talking frankly about suicidal feelings, and another had a post censored for quoting a disablist term of abuse that was shouted at hir, and was so upset by the censorship that they never came back. I also remember great anger at the boards being closed over the Christmas and New Year holidays - a time when many disabled people are at their most isolated and in need of online contact with others - due to the unavailability of BBC staff to moderate them, and despite claims on the website that the boards were open "24 hours a day, 365 days a year".

There were various attempts during the lifetime of the Ouch messageboards to set up alternative online communities not subject to BBC moderation, often by people who were unfairly censored on the Ouch messageboards, but, as far as i'm aware, none of them lasted very long. I don't know if any of these have been or will be revived now in light of the Ouch boards' closure, but i do think that the Ouch boards, flawed and imperfect as they were, filled a niche not adequately filled by anywhere else on the web, and will leave a vacuum that could do with being filled by something else (and preferably something not subject to the same sort of paternalistic restrictions as a BBC-hosted site).

Coincidentally, the idea of starting an online discussion community around disability and related issues (not necessarily filling *exactly* the same conceptual space as the Ouch site) is one that i have been toying with again recently. My partner and i (i've just realised i don't think i've really said anything on this blog about the fact that i've been in a relationship for around 8 months now - which is part, though certainly not all, of the reason i've not been blogging much in that time period) attempted, with a couple of other people, to set up a discussion group called dis-connection, which met monthly in Manchester, with the aim of bridging the divide between activism and academic discourse in the fields of disability and mental health, but have semi-given up on the project after difficulties with finding accessible venues, few people coming, and discussions not really evolving in the way we originally hoped they would - at the last meeting, we discussed possible strategies for relaunching/reinventing the idea, including an online discussion community (either in the form of a forum or a mailing list/listserv type structure). Considering this, i'm seriously thinking about taking the opportunity of the void left behind by Ouch and setting up a forum - but i'm wondering about whether, given how the internet has evolved and changed over the last near-decade (if memory serves me rightly, the Ouch forum was started in 2002 or 2003), the forum/messageboard format is still one that people are interested in...

Forums - including Ouch as well as several others, such as various anarchist/anti-capitalist/DIY culture and music-related sites - were a very major part, if not pretty much the centre, of my online life for several years - from when i first gained access to the net in 2001 until at least 2005, although it's harder to say when they stopped being so central because the transition from spending most of my time online posting on forums to spending it (or aiming to spend it) mostly blogging and reading blogs was a drawn-out and gradual one - there were definitely still a few forums that i was regularly checking, if not actively posting on, around 2008, but i haven't really posted on forums as a personal/social thing for at least 2 years now. My perception of how the web has shifted its focus has been first from forums/messageboards to blogs, probably some time around 2006-7, and then over the last few years from blogs to "social media" like Facebook and Twitter (with Facebook in particular seeming to have taken over the role that many of the more social/chat-oriented forums used to for a lot of people who spend a lot of time online) - but that may simply be my perception based on my own journeys through cyberspace, and not have much relationship to how many other people have perceived the evolution of the internet. (I'm also vaguely aware that there was a shift to messageboards/forums themselves from things like chat rooms and listservs, that mostly occurred before i got online - although listservs seem to have had a kind of renaissance in the form of things like Google and Yahoo groups, which work kind of like a hybrid between forums and mailing lists.) Certainly, many people on the Ouch messageboards seem to be strongly expressing a dislike for Facebook/Twitter-style social media and a preference for the messageboard format - but i don't know whether that's reflective of the wider online public...

(this xkcd comic from 2007, and its updated version from 2010, are interesting viewing here...)

So - i welcome comments (even though i'm not sure, given how little i've posted here in the last year or so, if i even have any readers any more - all the comments i ever get seem to be spam nowadays...) - if you're reading this, would you welcome, and would you post on, a discussion forum about disability, covering both theoretical and practical issues? How would you suggest it should be structured? And are you aware of any existing "replacements" for Ouch, or any other active disability forums out there in the Web? (Debates about the nature of online community, and whether it ought to be "supportive" or "argumentative", and experiences of setting up and maintaining forum/messageboard communities, are also very welcome...) Are messageboards still a major part of the internet (if indeed they ever were), or are they now hopelessly antiquated - and, if they are, what has replaced them?

(I note that the "Disability News" page, the other part of the Ouch! site that i continued to check regularly even after i stopped reading, let alone posting on, the messageboard, and which was one of my main sources for news items about disability (from the BBC and elsewhere), has already disappeared, seemingly without much discussion of its passing and presumably as part of the same BBC reorganisation. If anyone knows of any other disability news aggregators out there, i'd be very happy to know about them. Thinking about it, gathering disability-related news stories could also be part of the role of a messageboard/forum type of site...)

Does anyone know who wrote this?

2011-05-20T11:47:00.003+01:00

A friend in London is trying to find out who wrote the piece below called "On autistic levels of functioning". She thought it might have been written by me, but it wasn't, so to help boost the signal, so that it can be properly quoted and attributed, i'm reproducing it here. Did you write it, or do you recognise it from somewhere else?

(If you wrote it and object to it being reproduced here, let me know and i'll take it down and, if appropriate, replace it with a link or something.)

(I thought it could possibly have been written by Joel Smith, formerly of thiswayoflife.org, whose website seems to have totally disappeared, but that's just conjecture based on writing style. I'm also looking for another piece by him, called "Walking While Autistic", to use in a conference paper, so if Joel is reading this, or anyone else is who knows of a way to contact him, please let me know.)

On autistic levels of functioning We can all agree that to properly fight for our rights as autistic people, that we have to put forward out own perspective on what autism is and what it means to be autistic, one that challenges the notions put forward by the medical establishment. If we instead accept the medical ideas behind autism then we will end up agreeing, to a greater or lesser extent, to our continued marginalisation. One of the most important issues here is about levels of functioning - low-functioning versus high-functioning, and the related issue of Aspergers Syndrome versus 'classic' autism. Exploring this topic shows why it is so important to challenge conventional views of autism.

Conventional thought sees Aspergers Syndrome and 'classic' autism as related but different things. People with Aspergers are seen as having many autistic traits, but not the global learning and communication that people with 'classic' autism have (or rather supposedly have). In fact, Aspergers is frequently seen as implying high intelligence. Therefore, conventional thought sees the possibility that people with Aspergers could in most cases quite easily become part of society, and indeed may due to their intelligence and strong interests be particularly useful to society and develop useful specialist skills. On the other hand, people with 'classic' autism, whether deemed 'high-functioning' or 'low-functioning', are widely seen as being much more disabled, and having much less potential for independence or contributing to the world.

We'll leave aside the fact that all this stuff about measuring people in terms of how much they are able to 'contribute' as opposed to 'be a burden' is in itself deeply prejudiced. Instead, let's concentrate on the point that these divisions are actually artificial stereotypes - labels placed on people by the medical establishment to divide people up into those deemed 'less' or 'more' disabled. In accepting these, we are going to accept the argument put forward by, for example, Treating Autism and their allies, who argue that 'high-functioning' autistics and Aspies are not really that disabled and are therefore not 'really' autistic, as opposed to their 'low-functioning' children, who will need treatment in order to have a decent life.

In fact, there is no clear division between Aspergers and autism, and equally no clear division between high and low functioning. Autistics can be very high-functioning, or very low-functioning, it's true, but they can be simultaneously high and low functioning in different ways. There are cases of severely autistic people who have ended up, for instance, working for a university department (Amanda Baggs now at MIT on a p/t basis, Michelle Dawson on a regular and fully contributing (but unpaid?) basis, or on the governing board of organisations (Larry Bisonette at AutCom) demonstrating that the severity of the autism is not a barrier to being able to participate. Both individuals, incidentally, are firmly pro-neurodiversity in their outlook. Undoubtedly, autistic people have differing needs, with some being unable to talk and look after themselves, and others having no such difficulties. However, there is no point at which autism becomes too severe to be included in our movement.

Finally, another issue should also be considered. Of those labelled 'low-functioning' and whose ability to deal with the world appears to be genuinely compromised, how much of this is due to autism and how much to the way society reacts to it? If the reaction of society to a severely autistic person is to write them off and decide they have no capacity to develop, or worse, to pathologise whatever abilities they do have, it's very likely the end result will be a psychologically wrecked human being. We have all seen the pictures of the Romanian orphanages where unwanted children were dumped by their parents - some of these children showed clear signs of being deeply disabled, yet in many cases were only suffering from neglect. In our society, autistics frequently suffer depression, self-loathing, mental illness, behaviour problems e.g. aggression, and so on. These are not part of the autism itself, but the result of society's oppressive and discriminatory practices towards people on the spectrum. Prof. Rita Jordan, in a paper published on the AWARES website, argues that autistics should be said to have an Autistic Spectrum Condition, irrespective of severity, until they come into contact with a hostile society, at which point it becomes an Autistic Spectrum Disorder. I think this may be a much better, more 'liberationist' model to adopt than that of low and high functioning.

A quick one: Disability & Society free to download for the next few days

2011-04-28T15:00:00.002+01:00

I've been busy. Proper posts *will* be coming soon (as he always says...)

In the meantime, here's a quick announcement that i found out very, very late: the journal Disability and Society (which is basically the most important journal in academic Disability Studies) has been free to download for all of April 2011 - which means there are another 2 days of free access to academic articles on disability, from many of the most famous acdemics in the field, going all the way back to 1986!

I'm rushing through it and trying to download everything that interests me now to sort through at some point in the future - annoyingly, it doesn't seem possible to download whole issues at once, so i'm having to go through each one and pick out articles. I'm not downloading absolutely everything, but if anyone reads this after Saturday and sees anything they want but can't get without paying for it, it's worth dropping me an email in case they have it. I'm particularly concentrating on articles that have anything to do with autism, learning disability, education (including school-age and higher education), disability activism, disability and sexuality, institutions and deinstitutionalisation, psychiatry/anti-psychiatry, and conceptualisations of disability as identity.

(Of course, if you have a university affiliation, academic journals are usually free to download anyway, but this could be really useful to anyone who (like me) doesn't currently have one...)

More upcoming conferences

2011-03-20T21:31:00.003Z

These are a few months ahead, but the deadlines for abstracts are soon (28th March for the July conference at Warwick and 4th April for both the conferences in September)... I'm hoping to go to all of them, and *possibly* to submit abstracts to them, although i'm not sure if i will a) think of things to write about and b) get round to submitting them before the deadlines. Anyway, i thought that, if anyone in the UK is reading, they might be interested...

Event: Postgraduate Disability Research: A Critical Space to Engage ~ An Interdisciplinary Disability Research conference

Date: Wednesday 13th July 2011

Venue: University of Warwick, UK

The event is sponsored by the British Sociological Association (BSA) as part of a series of events for postgraduate students, therefore postgraduate student researchers working in the broad field of disability are invited to present at the conference. Internationally renowned academics Professor Dan Goodley, Manchester Metropolitan University, and Professor Carol Thomas, University of Leeds, have been confirmed as keynote speakers.

The event is FREE to attend for British Sociological Association (BSA) members and £25.00 for non-members.

Critical Disability Studies: In concluding his ground-breaking work mapping the terrain for critical disability studies, Goodley (2011 p.157) asserts: ‘while critical disability studies might start with disability, they never end with it’. Whilst the journey might well be non-linear, along the way ‘intersections’ are encountered and engineered which ‘connect disability studies with other important agendas of class, feminist, queer and postcolonial studies’ (p.157). The literatures and debates surrounding disability continue to expand and diversify. And yet, these flows are happening against economic, social and policy backdrops which serve to further challenge the potentials for change. There is then, ever more, a need to open up spaces for transdisciplinary debate about the position and future(s) of critical disability studies. Postgraduate students addressing and engaging with these issues and debates are part of the vanguard of this work.

Conference aims and objectives: Critical Disability Studies is an emerging subfield within the UK, but collective and collaborative spaces within which to explore and interrogate its options are infrequently opened up. This conference will bring together postgraduate students, disability activists and professionals/practitioners to explore some of the key questions which connect to the embrace of a critical perspective to disability research. In particular, what kinds of critical disability researchers might we ‘be’ and how should critical disability studies research be ‘done’?

Issues and themes: We welcome papers that address issues, agendas and debates which take, at least broadly, a critical disability studies approach.

Topics may include, but are by no means limited to:

• Concepts and their Re/Conceptualisations: ‘disability’, ‘impairment’, dis/ableism, as well as approaches based upon models, theories and ideological standpoint positions;

• Performances of Power: artistic, cultural, political, poetic, ritual; protest and activism; violence/non-violence; politicized and contested spaces

• Histories and Historical Ontologies: globalisation; colonialism and the postcolonial; empire; industrialization; materialism; gender; ethnicity; sexualities; time and memory.

• Difference and Dialogue: single impairment through to collective disability identity emphases; identity; intersectionalities; diversity; subjectivities; individualism; normalisation

• Bodies: impairment; embodiment; self and others; performativity; corporeality, materialization; discursive/transgressive/queer bodies; gendered/raced/classed/sexed bodies; cyborgs and hybrids

• Action, Motivation and Practice: choice, desire, dependence/independence/co-dependence; freedom/constraint;

• Methodology and methods: examples and experiences of empirical research taking approaches such as: critical; emancipatory; participatory; emerging;

Please submit a 300 word abstract or poster proposal accompanied by a 100 word biography to the conference organisers, Kirsty Liddiard and Simon Blake at criticaldisabilityspace@gmail.com.

Presentations must be no longer than 30 minutes inclusive of 10 minutes for questions. We would also like to welcome the submission of research posters. Posters must be between paper sizes A3 – A1.

The deadline for submissions is Monday 28th March 2011.

Click here for more information or contact the organisers: Kirsty Liddiard k.liddiard@warwick.ac.uk (University of Warwick) and Simon Blake lqxsb2@nottingham.ac.uk (University of Nottingham)

Event: Transformative Difference: Disability, Culture and the Academy

Date: Wednesday 7th and Thursday 8th September 2011

Hosted by: Centre for Culture and Disability Studies, Liverpool Hope University

Brief description: It is now widely recognised that a critical engagement with disability has the power to transform how we research and teach in a range of disciplinary areas – from education to medicine to the humanities and beyond. At the same time, conceptions of disability (and ability) are constantly changing, with shifting attitudes, new models, and the work of activists and educators to create a more equal society. This multidisciplinary conference seeks to explore how disability may function as a “transformative difference” in the academy, as well as how changing attitudes towards disability might have an impact on a range of subject areas. Keynote speakers include: Prof. Len Barton; Prof. Fiona Kumari Campbell; Prof. Dan Goodley and; Prof. Stuart Murray.In particular, the conference will explore the following issues:

* How might an engagement with the difference of disability challenge, enrich, or transform work in particular disciplines?
* How do changing attitudes towards and perceptions of disability affect research, teaching, and scholarship in different fields?
* How does the inclusion of a Disability Studies perspective transform disciplines which have not traditionally embraced this standpoint?
* What are the challenges of, or barriers to, engaging with disability (and Disability Studies) in disciplines that have not traditionally done so?

We welcome submissions for research strands or panels, group or individual papers and presentations in alternative formats. Suitable topics may include, but are not limited to:

* Disability and education (including teacher education, early years, further/higher education, and teaching and learning in Disability Studies)
* Disability and the humanities
* Disability in the sciences and social sciences
* Disability studies, medicine and health sciences

Abstracts (max 250 words) with a brief biography (max 150 words) are invited for submission by April 4th 2011. Papers from postgraduate students are especially welcome.

Enquiries to: Irene Rose at Liverpool Hope University: rosei@hope.ac.uk

Event: Critical Disability Studies Conference *Theorizing Normalcy and the Mundane* Conference 2011 *FREE!*

Dates: Wednesday 14th and Thursday 15th September 2011 ~ 10am-4.30pm each day

Venue: Geoffrey Manton Building at MMU, Chester Street, Manchester, M1 5GD.

Hosted by: A *FREE!* conference co-hosted by the Research Institute of Health and Social Change at Manchester Metropolitan University (MMU), University of Chester, University of Iceland, the Ontario Institute for Studies in Education at the University of Toronto and Sheffield Hallam University.

Brief description: This two day conference builds upon the first, and hugely successfully. ‘Theorising Normalcy and the Mundane’ conference held in May 2010. It brings together an international group of researchers and calls for papers which will address diverse issues including:

* exploring the cultural and political production of normalcy
* addressing our obsession with reason and rationality
* connecting ableism with other hegemonies including heterosexism, racism and ageism
* analysing the barriers and possibilities of the mundane and extraordinary
* deconstructing new pathologies and ‘abnormalities’

Confirmed keynote speakers include Deborah Marks (Leeds, UK), Anat Greenstein (MMU, UK) and Fiona Kumari Campbell (Griffith University, Australia).

Our aim is for this conference to be as inclusive as possible. We welcome activists, undergraduate and postgraduate students, practitioners and academics to join us.

In the spirit of an eco-friendly conference, registered delegates will be sent an e-pack. Details of accommodation near the venue will also be sent to delegates.

As the conference is free, lunch and refreshments will be available for purchase at the University, if you wish. Please let us know if you have any dietary requirements so we can make the restaurant aware of delegate requirements.

* Deadline for paper abstracts: 4th April 2011
* Deadline for attendance: 22nd August 2011

For the sake of ease, we are keeping the original email so please email abstracts and attendance to normalcy2010@hotmail.com

Call for short stories by autistic authors

2011-02-20T16:22:00.005Z

Once again, life events have prevented me from writing the "proper" blog posts that i have been intending to. This is getting seriously annoying. Hopefully, i will have some proper writing finished within the next couple of weeks. In the meantime, i thought some readers (if i still have any!) might find this interesting (I thought about entering it myself, with a humorous autistic take on Lovecraft-style cosmic horror, but i think the 3000 word limit may be an unsurmountable barrier for my long-winded writing style...):

Call for submissions Autistic authors from around the world!

Help us revitalize the short story!

(Please send or re-post this for all interested parties)

Emila Murry Ramey and Jody John Ramey, authors of the book Autistics Guide to Dating, are proposing to edit a short-story collection for our publisher, containing short-stories written by Autistics from around the world. We are looking for talented, vibrant authors to be a part of this potential project through Jessica Kingsley.

You do not have to be a published author to participate. The value of this project is that it will provide evidence that culture has impact on Autistic people, and that culture cannot be separated from the Autistic person when making claims about that individual. This is a project by Autistics, for Autistics, and those who love them.

We plan to submit the book proposal to Jessica Kingsley as soon as we have a number of stories selected for the project. We would like people to submit work as soon as they are ready. An author may submit any number of short stories for consideration, but submitting work will not guarantee that it will be selected. This call for submissions will expire 31 March 2011. Extensions on this deadline may be made on a case by case basis.

Summary: Short-story, any genre, any subject, English language, less than 3,000 words, by authors on the autism spectrum.

Submit story in a file saved as a .doc, and attach to the email. Also include the text in the body of the email message. Send to autistory@gmail.com and include as much contact information as possible so we can locate you to sign a publication contract. Please include your country of origin and country of residence if that is different. If you are not residing in your country of origin, please give a brief bio telling us how long you have been there. Any questions or queries, just email us and let us know. Well try to get back to you as soon as we can.

Updating my blogroll

2011-01-31T22:57:00.003Z

In my aim to get into regular blogging again (i have ridiculous numbers of unfinished drafts in dark corners of my hard drive that inertia (with a little help from a life that has been considerably busier - for good reasons - in the last few months than in the previous few years, and from various temporary computer problems) has prevented me from turning into finished blog posts...) i have decided to go through my blogroll and weed out dead links, blogs that no longer exist or have changed URL, etc - and have discovered in the process that quite a lot (possibly even the majority) of my blogroll is at least somewhat out of date - so, this is going to be an ongoing process...

As quite a few bloggers that were on my blogroll have stopped actively posting, but their blogs still exist online and still contain some very valuable writing, i've created a new blogroll section called "No longer updated, but still worth reading", into which i've moved the likes of FWD/Forward, Here Be Dragons and HackAbility. (As an aside, i was quite upset by FWD's very abrupt and un-warned-of ending, and in particular by their decision to permanently remove the ability of commenting on all their existing blog posts. Comment threads are actually the thing i value the most highly about the whole internet... but i will get round to writing about that properly at some point...)

(There are also quite a few blogs which haven't updated for a long time but - like this one in the last year or so - are or have been very infrequent anyway, and thus it hasn't quite felt fair to move them into that category. If there are any remaining in other sections of my blogroll that anyone reading knows are permanently inactive, let me know and i'll move them.)

A few blogs also seem to have disappeared from public view altogether: SexAbility and The Rett Devil both seem to have changed status to "invited readers only" (which is a shame, as both were great blogs containing some awesome and powerful writing, but of course is the prerogative of their owners), while Joel Smith's blog "NTs are Weird" (aka "This Way of Life", former URL http://thiswayoflife.org/blog/) seems to have disappeared altogether and its address taken over by an (interestingly autism-themed) advertising site.

A few others, notably Questioning Transphobia and Bird of Paradox, have changed URL, and i've updated those both here and on my RSS feed.

Anyway, aside from being an acknowledgement of changes, this is also a call for anyone reading (if anyone is still reading!) to recommend me other active blogs that cover similar ground to me and/or those i already link to - as i'm aware that, having been mostly out of the blogosphere for a while, there are likely to be excellent blogs i haven't discovered that have started up while i have been away...

Comment here if you'd like me to link to you, or if you spot a broken link/log that has changed URL/etc that i haven't!

Autscape 2011: Call for Proposals

2011-01-31T22:32:00.002Z

Proper posts have been delayed by computer issues. In the meantime, i might as well reproduce the call for proposals for Autscape 2011 (closing date 18th February) here. Still not sure if i am going myself, although i might submit something loosely based on parts that were cut out of my presentation at the Sheffield critical autism conference. 2011 seems to be shaping up to be a year of conferences, seminars, symposiums (symposia?), etc. for me...

AUTSCAPE 2011: OWNING AUTISM

Monday 22 August to Thursday 25 August 2011
Ackworth School, Ackworth, Pontefract, West Yorkshire WF7 7LT

CALL FOR PROPOSALS

Deadline for submissions: 18 February 2011
Submission form: http://www.autscape.org/proposals/proposalform

Please distribute widely.

Contents

1. What is Autscape?
2. What we are looking for
3. Theme
4. Audience
5. Examples
6. Non-verbal workshops
7. A few notes of caution
8. What do we expect from you?
9. What can you expect from us?
10. How to submit your proposal

What is Autscape?

Autscape is a conference run by and for autistic people. Non-autistic people are also welcome, but the environment and content of the event are centred around autistic people's needs, interests and sensitivities. Lectures are about autism. Workshops and leisure activities do not need to be specifically about autism, but do need to be suitable for autistic people.

What we are looking for

We are now accepting proposals for lectures and workshops to be presented at Autscape 2011.

PLEASE SUBMIT YOUR PROPOSAL BY FEBRUARY 18th 2011.

Suggestions and proposals for informal activities will be called for in the near future. These may include leisure sessions and discussion groups.

Theme

The theme for this year's Autscape is "Owning Autism".

Autism Spectrum Conditions (including Aspergers Syndrome) can be officially diagnosed by clinicians. They are examined, thought about, and commented on by academic researchers, journalists and parents. These people contribute to defining what autism means in society. However, autism is experienced from the inside by autistic people.

We want to examine who currently "owns" autism and how ownership is expressed. We invite consideration of the ways autistic people own our condition.

Presentations which seek to develop this theme will be given priority however any suitable topics will be given consideration.

We wish to explore a broad range of perspectives on being autistic in many different ways. This can be through formal presentations or workshops, and may be theoretical or practical. Many different types of input are welcome: traditional lectures, creative expression, physical activity, interactive workshops and more.

Audience

Although we welcome non-autistic professionals and family members, this event is primarily for autistic people, not about us! Workshops geared towards parents and professionals may be accepted, but must be positive in their support for autistic people and our right to be different.

Examples

For some examples of what has been presented at Autscape in the past, see last year's presentations at: http://www.autscape.org/archive/2010/

We are also likely to enjoy similar workshops to those that have been presented at Autreat, in the USA. See: http://www.ani.ac/

Non-verbal workshops

Although many of the autistic people who are attracted to an event such as Autscape are highly verbal, others may have difficulty with an event centred around language. We want to welcome and fully include all kinds of autistic people, including less 'wordy' ones. Therefore we are also seeking workshops which are not primarily focused on the spoken word. (Presenters may still use speech; it is just not the main content of this type of workshop). Examples: dance, relaxation, music, art, construction of some kind. These workshops are different from casual leisure sessions in that they have more structure, preparation (from the presenter), relevance to autism and the event's theme, and duration.

A note of caution

Cures: Workshops about curing or preventing autism are likely not to go over well at all and are best avoided altogether, unless it is from an advocacy standpoint.

Personal Experience: We all have personal experience of autism. If your presentation is primarily based on your personal experience, think carefully how it can help attendees to find new understanding of their own situation. Please let us know what you're hoping those present will gain from your presentation.

Suitability: Every workshop, no matter who it is targeted towards, should be suitable for autistic people to attend without feeling objectified or put down.

What do we expect from you?

* Reliability: You need to be able to assure us that except for unforeseen circumstances you will be there to present as agreed.

* Presentation materials: Please send copies of any handouts and computer presentations (e.g. powerpoint) by the date requested (to be confirmed, approx 2 weeks before Autscape). These will be made available for download and printing by Autscape participants. In addition we can printed a limited number of pages for handouts.

* Your details and presentation summary: We would like to include your presentation summary, biography and any electronic handouts you provided in our website's archive area.

* Permission to record: Please allow us to video or otherwise record your presentation. These records may be made available to others by Autscape. Some participants may also audio record presentations for their own use. If you submit a proposal we will assume you are happy with these expectations. If you have any questions or objections, please let us know so we can discuss it.

* Presenters are encouraged to run a discussion group on their topic later in the day, for those who would like to explore the issue further. If you may have problems with this we will try and find a volunteer to help.

What can you expect from us?

* For Presentations: You will receive a day's attendance at Autscape free of charge. Presenters will be accommodated on-site for the day of their presentation including the night before or after. Only one such place can be offered for each presentation, regardless of the number of presenters. Unfortunately, due to the funding situation we cannot offer free attendance at all of Autscape this year. Whenever you are not presenting you can enjoy the event, including other workshops and the setting, just as any other participant.

(Please note, this does not apply to informal activities such as leisure sessions however for these we will pay reasonable expenses for materials required)

* Involvement: One thing you can expect by joining us is the opportunity to shape an emerging self-advocacy event and autistic community. There will be opportunities at the event to get involved in the future of Autscape.

* Audience: A rare opportunity to be heard by a significant number of autistic people. A chance to have some influence and get some feedback from the people who matter most in the field of autism.

* Respect and consideration. We will let you know as soon as possible if your proposal has been accepted and will try our best to accommodate you at a time that suits you.

How to submit your proposal

To submit your proposal, please use one of the following:

* online form: http://www.autscape.org/proposals/proposalform
* e-mail: programme@autscape.org
* or post to: Autscape, 24 Anson Road, Upper Cambourne, Cambridgeshire, CB23 6DQ, United Kingdom.

Please include the following information:

ABOUT YOU
Name
Country
At least one way to contact you of: - Email address (preferred) - Phone number - Postal address
Experience (a summary of your relevant experience, including presentations/education/advocacy, and the nature of your interest in autism and/or in general disability issues)

INFORMATION FOR THE PROGRAMME
Your name or alias (for public use)
Biography (50-100 words)
Presentation title (1-12 words)
Summary (50-150 words)

ABOUT YOUR PRESENTATION
Type of session (choose one):
- Lecture (audience mostly listens)
- Workshop (audience participates verbally)
- Hands-On (audience participates physically)
- Other (please describe)

How does your presentation relate to this year's theme "Owning Autism"?

Please describe your presentation or activity for the decision makers.

OTHER COMMENTS NOT ADDRESSED ABOVE

All proposals must be received by 18th February.

What happens next

The committee will decide which presentations to accept for Autscape and will inform everybody who has made a proposal of their decision by 23 March.

I'm presenting my first academic paper!

2010-12-17T00:52:00.003Z

(OK, it's not 100% *my* paper - it's a joint paper, which i'm half responsible for. I'm not sure if my co-writer/presenter wants hir name made public here, so will check and edit hir name in if ze is... also, my next post will be about naming, quoting and the conflict between the pseudonymity of blogging and the attribution requirements of academia...)

This is the abstract of the paper that i am (co-)presenting at the Critical Autism Seminar Day at Sheffield Hallam University on 18th January 2011:

Social dis-order: autistic experiences of/in radical political activism

The discipline of disability studies is rooted in the political struggles of disabled people to emancipate themselves from social oppression. Much has been written about the relevance of different critical theories (e.g. Marxist, feminist, queer) to the understanding and challenging of disablist oppression (ref: Oliver,1990; Morris,1991; Garland-Thompson,2005; McRuer,2006).

With an impairment-specific regard to autism, application of the social model of disability to issues of (e.g.) communication and executive function may provide radical reassessments of the fundamental "rules" of presently-existing society. Autistic people are often strongly drawn to radical political movements and/or radical/"alternative" social milieus, but also are likely to find aspects of them problematic, where disability and communication difference are not fully taken into account.

This paper seeks to explore the convergences and tensions between disability and other dimensions of oppression and liberation, and between autistic (and otherwise disabled) people's struggles and other radical social struggles, by looking at the experiences of autistic activists in radical social movements.

By looking at on-line writings of autistic social change activists and by drawing on our own experiences of anarchist, queer and feminist activism, we explore how autistic understandings of social justice and inclusion can inform, enrich, and challenge conceptual gaps within, radical politics and the social milieu associated with it.

We focus in particular on the way politics and process within the "movement of movements" (e.g. non-hierarchical organisation and consensus decision making), while seeking to destabilise power inequalities and include non-hegemonic voices, still contain normative assumptions about effective communication and the social body.

(Unfortunately i believe that places for the seminar day are already fully booked, despite the stated deadline for attendance being 6th January. However, i might be wrong there, so if you are interested in going it might still be worth contacting the organiser, Katharine Runswick-Cole, at k.runswick-cole@mmu.ac.uk.)

To give other autistic people who are involved in radical activism an opportunity to contribute anecdotes or opinions that we may use in the paper, i am sending out a list of questions to those who i know and asking them to pass them on to any others they know. (These don't constitute any sort of statistical survey, but just a jumping-off point for writing about experiences and perspectives.) If anyone reading this wants to answer the below questions, please email me your responses (or post in comments if you don't mind them being publicly visible), and say if you want me to attribute anything i end up quoting in the paper.

1) How would you choose to identify in terms of your neurology (eg. autistic, Asperger's, "cousin", self-diagnosed autistic, etc.) (multiple answers acceptable!)

2) Do you identify with a particular political "label" (eg. Marxist, anarchist, radical feminist, deep ecologist, etc.) (multiple answers acceptable!)

3) What drew you to radical social activism?

4) Do you think that there is a connection between your neurodiversity and your activism? If so, what do you think that connection is?

5) Can you describe any particular experiences (whether positive or negative) of being autistic in radical spaces that stand out to you?

6) Do you think that the radical social movements you are involved in are a) aware of autism and what it means and b) accepting of autistic people? If not, why not?

7) Do you think that radical social movements/spaces tend to provide an environment that is better or worse suited to autistic people than mainstream political society? If so, why? If not, why not?

8) Is there anything else you can think of in your personal experience that is not covered by the above questions, but is relevant to this paper?

I'm incredibly excited about getting to present this paper - it fits perfectly into one of the main things i'm currently perseverating on, trying to make connections and break down barriers between academic research and grass-roots activism. Watch this space for further developments.

Call for papers: Critical Autism Seminar Day, 18th January 2011, Sheffield

2010-11-13T18:34:00.005Z

Real posts coming soon. Yes, really. In the meantime, i thought this worth sharing:

Call for Papers - * Critical Autism Seminar Day * Tuesday, 18th January 2011

A free seminar day co-hosted by Sheffield Hallam University, Manchester Metropolitan University and the Disability Research Forum.

Date: Tuesday, 18th January 2011
Time: 9.45am - 4.30pm

Venue: Arundel Room 10301, Sheffield Hallam University, 122 Charles Street, Sheffield, S1 2NE

This seminar day brings together an international group of researchers and calls for papers that will address diverse issues including:

- deconstructing pathologies and 'abnormalities'
- concepts of fear and fascination
- exploring neurodiversity
- autism as/and celebrity
- 'autism industries' and the commodification of impairment

Keynote speaker: Anne McGuire* (Department of Sociology and Equity Studies in Education, Ontario Institute for Studies in Education (OISE), University of Toronto, Canada). Anne’s doctoral research analyses the social significance and productive effects of cultural representations of autism produced and circulated by individuals and collectives engaged in autism advocacy in the contemporary West.

Our aim is for this conference to be as inclusive as possible. We welcome activists, undergraduate and postgraduate students, practitioners and academics to join us.

In the spirit of an eco-friendly day, registered delegates will be sent an e-pack.

As the conference is free, lunch and refreshments will be available for purchase at the University, if you wish. Please let us know if you have any dietary requirements so we can make catering outlets aware of delegate requirements.

Deadline for paper abstracts: 1st December 2010
Deadline for attendance: 6th January 2011

For more information/to submit abstracts, please contact: k.runswick-Cole@mmu.ac.uk

*not to be confused with this Anne McGuire

I met Anne McGuire at this awesome conference back in May (holy shit... that was a whole 6 months ago?!?! that shows the extent of my inertia and lack of time-perception - i have something like 30 pages of notes from that conference that i am still intending to make several blog posts about... and, as an indirect result of that conference, there has been one very major and unprecedented positive change in my life, which i may also eventually write about...), and can vouch that she is one of a very small number of non-autistic academics/professionals in the "autism field" who are proudly and thoroughly on "our" side. Her presentation at that conference was a deconstruction of a "warning" poster issued in Canada about "red flags" for autism in children, and based partly on the experiences of her autistic brother. Mitzi Waltz, who is another of that small number (and also has an autistic family member, as well as being a much valued friend and ally to very many of us in the UK autistic self-advocacy movement, such as it is) is also going to be presenting there (and i hope she doesn't mind me saying so here). I believe Larry may be going too?

Despite being unemployed, i am somehow still far too busy these days...

When Will We Be Paid For The Work We've Done?

2010-10-19T02:35:00.005+01:00

FWD/Forward alerted me to this story, about Mary Brown, a woman with Down's syndrome who does unpaid volunteer work as a classroom assistant in a "special education" primary school classroom (in the US, although extremely similar things happen in the UK and other places). The news story presents this as an unequivocally good thing, something that is a great beneficial opportunity given to Brown, without ever seeming to consider that there might be some injustice in such a set-up:

Brown’s unpaid job is to be a teacher’s aide in Masaki’s classroom. While the position is voluntary, Brown works like the two full-time paid teacher’s aides, Rita Evans and Wendy Usary. The paid aides help Masaki with the classroom teaching everything from potty training to table manners to play time to desk work.

Brown helps control the children and helps keep the classroom running the three days a week she’s there.

Firstly, there's a bit of an ambiguity here - Mary Brown "works like the two full-time paid teacher’s aides", but then distinctly different descriptions are given of the work that the paid aides do and of the work Brown does - although it could be an actual material difference, or it could be essentially the same work described differently, with emphasis given to different parts of the job (perhaps to make Brown's work seem more trivial, less truly necessary work and more something she has been "allowed" to do as a favour?). Secondly and more importantly, if Brown "works like the two full-time paid teacher’s aides" - and therefore her work has the same value as theirs - then why isn't she also paid? It seems to be seen not just as perfectly acceptable, but somehow as a laudable, philanthropic act of "assistance" to them, to have disabled people doing the same work that non-disabled people get paid for, and give them nothing in return for it - and yet, apparently, it was the "fast-food place" Brown was working in before - in which she was presumably paid - that was "taking advantage of the fact that she was disabled"!

The vast majority of the quoted speech in the news article, and the to-camera interview footage in the accompanying video, is by Brown's "employers", teacher Barbara Masaki and principal Debbie Gill, who get to describe and define both Brown herself and her "employment" situation. Where Brown herself gets quoted, the newspaper seems to do what many similar articles and interviews i have read seem to do with/to people with learning difficulties/developmental disabilities/intellectual impairments [is there a generally agreed-on term for these sort of impairments? I see different terms used, both across the UK/US divide and as claimed to be preferred by different organisations of people with such impairments themselves... in this post i'm using them fairly randomly without intending to assign different nuances of meaning to the different phrases] - deliberately editing her speech (as all quoted speech in newspaper articles is deliberately and selectively edited) to appear as as inane, childish and ungrammatical a collection of non sequiturs and statements of the obvious as possible, presumably with the intent for the reader to look down on and patronise her, and/or to portray her as incompetent to be considered an adult human being. (I have to confess that, due to the combination of my auditory processing impairment with Brown's rather quiet speech, Southern US accent, and the lack of captioning in the video, i couldn't really make out much of what she was actually saying in the (very short) time she got to speak in the video, but it certainly seemed like she wasn't given the opportunity to say much of meaningful content.)

Gill's comments are the usual rather sickening "inspiration" stuff, but nowhere near as offensive as some of what Masaki says...

First, Masaki describes Brown as "a poster child for what a Downs can do" - "a Downs"?!?! OK, i'm not that into "person-first language", and do sometimes describe myself as "an autistic" - but "autistic" is an adjective, and there isn't really any equivalent adjective for Down's syndrome, and "Down('s)" is an eponym, an impairment named after the doctor who "discovered" it, and using it like that as a noun to describe a person with the condition feels incredibly dehumanising to me (i would be not at all happy to be referred to as "an Asperger's"... [eponyms such as "Asperger's" and "Down's" take an 's in British English but not in American English]). It implies that Brown is nothing more than her impairment, and that people with it can be dismissed as a homogeneous category completely without individual personhood. Of course, in this quote she also calls the 23-year-old Brown a "child", as she does again in another quote:

“She will always be a trainable child. Even when she is in her 80s, she will still be functioning on the level of a trainable child,” Masaki said. “But wouldn’t it be nice if there was a little bit of the child in all of us?”

There are several horrible things here. First, the uncritical use of the term "trainable", dating from the workhouse-era classification of intellectually impaired people into those who could be "trained" to do "useful" work (often with "training" methods that basically amounted to torture) and those who could not (particularly disturbing coming from a "special education" teacher!). Second, the assumption that her "functioning level" (a heavily loaded and problematic term in itself) will never change throughout her lifetime, and that, despite Brown demonstrably being in reality an adult, her "functioning level" is that of a child, meaning that Masaki buys into the "eternal child" stereotype of learning-disabled people - historically and still used to deny them adult sexualities, adult roles within families, and all the basic rights, freedoms and responsibilities that anyone else is assumed to gain automatically on reaching chronological adulthood - which is perhaps even more disturbing as an attitude held by a teacher whose pupils she considers herself "mentor and so much more" to. Thirdly, the glib "wouldn't it be nice" comment, which is more patronising "inspirational" crap, making disabled people into ciphers of innocence rather than real, flawed and complex people.

After all this, Masaki then says, with breathtaking hypocrisy, “I’m disgusted when I see people reacting to her like she’s a disabled person. She’s a person.” - which firstly implies that, to her, the categories of "disabled person" and "person" are mutually exclusive, and that a disabled person is an inherently disgusting thing to be, and secondly seems to imply that Masaki sincerely believes herself to be not discriminating against Brown, but treating her equally to a non-disabled person!

Another quote that shocked me is “I would love for her to get a part-time job in a day-care center [sic] or in a classroom setting if they will work with her.” Mary Brown already has a 3-day-a-week job in a classroom setting - she just isn't getting paid for it!

There's a lot more that could be said about the whole context of a segregated "special education" classroom, and a whole lot of analysis could probably be got out of Masaki's comment that “She sees things from the disabled point of view... and when she comes out here with them to calm them down or play with them, they don’t see her as the big bad authority figure like they see us. They see her as one of them.” - the "us/them" distinction, the idea that a member of a minority "service user" group who is on the "service provider" side of the line in a service setting is tactically useful for forming a "bridge" between "us" and "them", and whether or not the teacher is being ironic or self-deprecating in her description of the kids' perception of herself as "the big bad authority figure" - and, of course, the authoritarian nature of schools as a whole - but if i tried to do all that now i think it would grow into a whole separate post about "schooling" and education...

Also, although no mention of it at all is made in the article (and i apologise in advance if, coming from the UK, where "race" is quite different to what it is in the US, my analysis or language use is wrong/inaccurate here), the ethnic/racial context of this is horrifying. Mary Brown is black (African-American). Her "employer", and all of the children attending the school that we see in the photos or video shown, are white. This is in South Carolina, the founding state of the Confederacy. A black woman is doing unpaid labour - of a type that was very much coded as "house servant" work in the slavery- and feudal-era US South - for a white "employer" who is portrayed as her benefactor (and gets to patronise and speak for her, even explicitly describing the adult Brown as a child - just like the "girl" and "boy" terminology of slavery), and she is expected to be grateful for it and regard it as the best opportunity she can get.

This sort of thing is really not that unusual. In several places in the UK, i've encountered cafés or shops in council-run buildings or parks/leisure facilities that were "staffed" by people with learning difficulties, who on a bit of enquiry turned out not to be actual paid staff, but on "work placements" from day centres, considered to be "therapeutic" or "opportunities for personal development", and therefore not at all exploitative (sarcasm). Even things like this, at a "disability rights festival" (which i have been to a couple of times, and which does showcase some genuinely radical art by disabled performers), are unclear about whether their "students" are actually paid for the work they do, or if "enabl[ing them] to develop catering, social and life skills" is considered "payment" enough.

Government also often uses similar rhetoric to justify placing disabled people (often effectively forcibly, with the threat of loss of benefits for "non-compliance") in unpaid "work placements", the purpose of which is supposedly to teach them relevant skills for "the world of work" (even though these are often skills they/we already have, and it is not lack of ability to do a job, but lack of opportunity to get a job due to physical and attitudinal barriers put up by employers, which results in us being unemployed). In the UK, Conservative Prime Minister David Cameron's "Big Society" rhetoric makes it explicit that disabled (and other unemployed) people are to be expected to do "voluntary" work to "justify" receiving state benefits (and that work regarded as vitally necessary for society, and previously done by paid public sector workers, is going to end up being done by such "volunteers"), while when DAN cornered his government's "Minister for Disabled People", Maria Miller, in Manchester in June, she repeatedly used the phrase "job placements" without ever clarifying if it meant real jobs or such forms of exploitation "justified" by paternalism (in a way heavily reminiscent of the similarly pseudo-paternalistic "White Man's Burden" rhetoric of slavery and colonialism). And, of course, exploitation disguised as philanthropy has been the core business of disability charities such as Scope (the rebranded "Spastics Society"), Leonard Cheshire, etc. since their founding in the Victorian era.

As a broadly-communist anarchist, i obviously have much broader criticisms of the whole concept of wage work - but i still think it's a massive improvement on slavery. And while Mary Brown has not been physically forced to work with no pay - and so calling her situation "slavery" as such would be an insult to her (very recent) ancestors who were literal slaves - it's still a horrible example of discrimination and exploitation, made more horrible by the way that it is portrayed so uncritically as a gift or favour to her - when it's Brown herself who is giving her labour freely in a context where she would be more than justified in demanding payment for it. While wage work exists at all, disabled people do not our unpaid labour exploited under a crudely euphemistic guise of patronisingly "giving us opportunities", or some bizarre "preparation" for future "work-readiness" - we want real work for real pay and equal pay for equal work. When will Mary Brown - like all the other disabled people exploited in similar situations - be paid for the work she's done?

Another brief personal update

2010-08-30T23:56:00.002+01:00

I only realised the other day that it's been over 2 months since i last posted anything here. I haven't abandoned this blog, i've just been (primarily) busy with offline things, and also seem to have lapsed into another phase of the odd inertia/procrastination/writer's-block hybrid that i seem to be prone to (where i can think of any number of things that i would like to write about, and even have fairly detailed ideas for post/essay structures in my head, but somehow completely fail to a) translate those ideas into coherent words or b) actually start writing them. I think it may also have something to do with the fact that the speed i think (for not-explicitly-verbal forms of "thinking") at is (or at least feels) a hell of a lot faster than the speed i can either speak or type at - meaning that i often find it too frustrating to slow down my thought processes enough to verbalise my thoughts in coherent sentences, and/or forget the end of an idea before i've finished typing the beginning of it... and also probably something to do with my very atypical perception of time passing (which is another thing i need to post about)).

I've also become somewhat dissatisfied with the layout and appearance of this blog (again). I don't want to become one of those people who change their blog layout every few weeks/months, though, as i find that really annoying in other blogs (especially when a blog changes again when i've just got used to the last layout...), so i may not make major changes. I might make some minor ones, though (and indeed need to make a few, such as updating my blogroll, as i know a few of the blogs on it have either disappeared, changed name or changed URL, and there are a couple of new ones i need to add). Also, some of my dissatisfaction is probably due to the fact that i didn't actually finish the last lot of changes, because there were things i didn't get round to working out how to do (such as "stitching" together several images to make one image "banner"). If there are any layout changes that would make this blog more accessible to anyone reading it, please let me know.

So... i do very much intend to write several "proper" blog posts soon, but as i've been intending to do so for the last several months and not got round to any of them yet, i don't want to guarantee anything. If you don't like checking blogs that don't update very often repeatedly in case of new posts (i know it frustrates me), then you can follow me on Twitter instead, as if and when i do post anything new here, i'll also post a link to it there.

I'm also considering starting another blog for posting relatively "trivial" things, that i've thought about posting here but then decided not to because i thought they might be too silly or irrelevant to the kind of "serious" stuff that i generally post here and that anyone who follows this blog is probably following it for - photos, random nerdy bits of speculation, etc. Not sure what to call it yet (which is probably actually the main reason why i haven't started it already!), but it might well end up being posted to a lot more regularly than this one. Let me know if you'd be interested to follow it (it would probably mostly cover things like cryptozoology, psychogeography, Forteana, birdwatching/wildlife photography, hillwalking/landscape photography, urban exploration, etc, and be more visual and less wordy than this blog).

In non-blog news, it's now looking pretty unlikely (although still not yet definitely impossible) that i'll be going to Leeds to do the Disability Studies MA this year, and so i'm probably going to go for September 2011 instead. This means i'm going to have to find something meaningful to do with myself for the next year... although i've at least got a reasonable amount of activist focus at the moment, and am not feeling too bad about it, at least for now.

Anyway... if i still have any readers, hopefully i'll be back soon (for fairly imprecise values of "soon")... ;)

Thoughts on a local news story

2010-06-25T00:34:00.001+01:00

I saw this story on the front cover of a discarded local paper on a bus today. On the surface, it looks like a fairly unremarkable example of the standard local paper sympathy-eliciting disability story - but i think that this one - like many of its kind - has deeper undertones to it.

Anthony Booth, the man who has had his prosthetic legs stolen days before his sister Angela's wedding, has been a wheelchair user since the age of 9 - and, as he's a Paralympic wheelchair racer, it's obvious that that's his strongly preferred method of locomotion, and he's quite likely more "successful" at it than many people with no physical impairment at all are at walking. ("Successful" seems an odd way to put it, but i can't think of a better word - i mean in terms of finding it easy, effortless, something he can comfortably do many miles a day of. Of course, i'm not at all implying that those for whom walking, wheelchair pushing, or whatever their preferred method of locomotion is, is at best painful and difficult are "unsuccessful" because of that - i'm just struggling to escape disablist language. Sapir-Whorf again, methinks...) So, why is it so important to his sister that he "walks her down the aisle"? What purpose has it actually served him to spend so much time, effort and self-cited discomfort on learning to walk on prosthetic legs "without using a stick"?

Is the sister's voice authentic in saying "It's more for him that I'm upset because I know he really wanted to do it"? On the surface, that seems a simple and honest thing to say - but it also has an air of required justification about it, a suggestion that, on some level, she is aware that it would be somehow inappropriate or unjustified to be upset about this "for herself". Has she, perhaps even subconsciously, put pressure on her brother to learn to walk when he himself - wheelchair user since childhood and professional athlete who has thus essentially built a huge part of his identity around being a wheelchair user - might well have preferred to play his role in her wedding ceremony using his own comfortable, "normal" method of moving, rather than walking on "uncomfortable" prosthetics because he "wanted it to be the way she wanted".

Also, the whole focus of the story is the theft of his prosthetic legs, but it glosses over the fact that his wheelchair was also inside the van that was stolen. It doesn't say whether it was his Paralympic racing wheelchair - it's probably more likely that it was the wheelchair he used for ordinary, everyday locomotion - but, given that in 24 years of being a double amputee, he apparently hasn't wanted to learn to walk with prosthetics until recently, i strongly suspect that the loss of his wheelchair would have been a far more significant loss for him in terms of everyday mobility than that of his legs.

Going a bit further, why does she feel such a need to have a male relative "walk her down the aisle" anyway? Has she stopped to question the roots and implications of this custom - of women as property of the men around them, and marriage as a ceremonial handing over of woman-as-property from her father, brother or whatever male relative "ownership" defaults to in a patriarchal inheritance system, to her husband? Does she conceptualise herself that way - and, if not, does the survival of patriarchal customs marking women as chattel, even as arguably decontextualised and now-effectively-meaningless bits of ritual, still contribute to oppressive attitudes and actions on the part of those men and internalised self-oppression on the part of those women who uncritically accept and perpetuate those customs?

How many people, reading this "human interest" story, will take for granted the assumptions - about marriage, about disability, about what obligations are and should be part of family relationships - that it contains - that although Anthony Booth found walking on prosthetic legs "uncomfortable", it was right that he should have mimicked the locomotion of a non-disabled person - putting the appearance of normality before his own ease and comfort of movement - to play the part expected of him by his family in a patriarchally normative ritual, and that it is a tragedy and a scandal that he was prevented from doing so (although perhaps not so much that he had his primary means of mobility taken from him)?

There's nothing particularly important or remarkable about this one, small local news story - it's just an example of the many levels of assumptions and prescriptive social norms embedded in what seem like trivial examples of simple, factual reporting - all of which can be unpacked or deconstructed to show biases that go largely unquestioned in mainstream media and mainstream society. There are stories that can be similarly unpacked in every newspaper (magazine, TV news broadcast, etc.) every day. The purpose of deconstructing this superficially trivial story isn't to attack Angela Booth or the Manchester Evening News - it's to highlight that the way the mainstream news reports stories, concerning not just disability and other marginalised identities, but also "normal" and generally-approved-of customs such as marriage, is not "neutral" or "objective", but - even if it does not do so consciously - defends and upholds privileged constructions of what is valued and devalued.

The same local paper which makes a headline out of an individual disabled person's mobility aids being stolen has failed to report on the collective theft of huge amounts of money in tax and benefits from disabled (and otherwise poor and marginalised) people by the UK's new government in its "emergency" budget, and also didn't report the collective direct action taken by disabled people last week in Manchester city centre against the exploitation of disabled people by contracts between government and big business (notably, the independent, community-run Manchester Mule did.). Is this because an individual thief is easier to vilify than an entire system which has theft and violence at its very foundation? Because disabled people are more newsworthy as individualised "victims" (of individual criminality, not of systemic oppression) than as organised activists fighting back? Or merely because certain news stories fit easily into stereotypical formulae, and it's easier and "safer" to keep to such established, non-boat-rocking narratives than to report on anything more "challenging"?

I want to get into the relationship between activism and the media, and the thorny questions of how and whether to engage with corporate/mainstream media and/or simply create our own, here, but i think that's for another post, and i'm still not quite back into "regular" blogging. I will hopefully get back into at least semi-regular posting in the near-ish future, tho...

DAN Defend Welfare action in Manchester, 16th June 2010

2010-06-21T01:14:00.007+01:00

I posted this at Indymedia a few days ago, but it just occurred to me that i could also post it here. (Real life stuff happens, and i somehow manage to forget that i have a blog...)

Yesterday (Wednesday 16th June), DAN (Disabled People's Direct Action Network), along with members of Manchester Anarchist Federation and Manchester Unemployed Workers Union, took action in Manchester city centre as part of the National Day of Action against the Flexible New Deal called by the No to Welfare Abolition coalition (see the Defend Welfare website).

Around 25 activists, mostly from Manchester (although people from Sheffield, Leeds and Lancaster were also involved), and including disabled people with a wide variety of impairments and other benefits claimants, assembled in Portland Street at 2pm to hit the first target, the Beaver House office of A4E, the company who take government contracts to run "workfare" schemes which force benefits claimants into "temporary work placements" for far below the minimum wage, with promises of full-time jobs afterwards which never materialise - effectively using disabled people and other claimants as slave labour, while also claiming credit (and getting public money!) for "clients" of theirs finding jobs, even when A4E themselves had nothing to do with it (and could be said to be actively hindering people from seeking "real" jobs by forcing them to waste time in their offices on "training" and "placements" which lead nowhere).

(A4E also have subsidiaries involved in Israeli-occupied territories in Palestine and have attempted to censor criticism of them on the internet, among many other nasty things. For more information on A4E, see links such as: Watching A4E
A4E: Supporting Your Future?
A4E to claimant: "Get a job" (Edinburgh Anarchists)
A4E: more from the Poverty Pimps (Johnny Void)
Jobseekers treated like cattle (Manchester Evening News)
A4E's scheme wins award (Manchester Evening News) )

A small group of activists tried to enter the office and demand to speak to the manager of A4E, but were locked out from the inside by staff operating the "automatic" doors, and rejoined the main group outside, picketing the entrance to the office with banners, placards, leaflets (of which we gave out several hundred to workers and passers-by) and chants such as "Real Work for Real Pay", "We want jobs, not slave labour", "A4E, not for me, stop exploiting disabled people!" and "welfare not Workfare, Welfare not the Workhouse".

DAN's second target was originally going to be the central Jobcentre on Albert St(?), but we were tipped off by a last-minute text that Maria Miller, the Tory Minister "for Disabled People", was going to be at Manchester Town Hall to speak at the Independent Living Awards organised by Breakthrough UK from 4.30pm. Therefore we made a quick change of plans and headed to the Town Hall, where we did some more leafleting and talked to an interested local radio journalist before getting into the Town Hall lobby via the access ramp and demanding to speak to Maria Miller (without, it has to be said, much expectation of actually getting her...)

The second surprise of the day, however, came when Miller, accompanied by the chair of Breakthrough Uk, came down the corridor and ran into our protest, and after being made aware of the situation was willing to speak to us "briefly", which we managed to stretch out to a good 20 minutes, during which DAN got to ask her several uncomfortable questions, in response to which she displayed a typical politician's evasion of a straight answer (for example, never giving a clear "yes" in response to being asked if the new government actually had any plans to engage with grass roots disabled people who were actually affected by its policies).

Miller repeatedly claimed she "couldn't agree with us more", despite having disagreed minutes previously, and in general seemed to be full of vague assurances and "reassuring" claims that the government was not doing what it is well known to be doing, denying disabled people welfare support and forcing them into "job placements" (a phrase she repeatedly used without clarifying if it meant real jobs) that are completely unsuitable. She claimed that "those genuinely unable to work will not be denied access to welfare benefits", but declined to acknowledge the fact that many disabled people who would be both able and willing to work if barriers were removed and impairments accommodated are left in limbo, unable to find work that is practically possible for them yet deemed by the government and mainstream media to be "workshy" or "able" but not willing.

While we may not have actually shut down the A4E office, we managed through this action to raise considerable awareness among the Manchester public about the reality behind their shiny corporate facade, and managed a fantastic coup by getting the last-minute tip-off about Maria Miller's presence at Manchester Town Hall!

Other actions happened as part of the National Day of Action against the Flexible New Deal in Edinburgh, London, Sheffield, Cambridge and elsewhere.

For more information about DAN or to get involved, email danmail-subscribe@yahoogroups.com

DAN banner outside the A4E office on Portland Street

Another DAN banner

Will they give me a job as an England footballer?

Leafleting outside Manchester Town Hall

Negotiating with Town Hall security guards

Maria Miller, Minister for Disabled People, being interrogated by DAN

A quick personal update

2010-04-27T00:44:00.002+01:00

I've just realised it's been over a month since my last post. The gap of that length wasn't intentional, i've just been busy with various things going on in my life, plus the usual wanting-to-write-about-lots-of-things-but-not-getting-round-to-it inertia. However, i think i owe whatever readers i have a bit more of an explanation of the events of the last 6 months or so in my life.

In September last year, the job i had had for more than a year as a PA for another (physically impaired) disability activist (as mentioned in this post) fell apart, and most of my life and plans for the future along with it. I don't really feel like going into the exact circumstances, but suffice to say that i was betrayed very deeply on both personal and political levels, and there were repercussions within both local and national activist movements. As a result of this, and the fact that other key people in my life had moved on and other local activist projects i was involved in had fallen apart due to lack of enthusiasm and/or organisation, there was really nothing left for me in Birmingham, and so i made the decision to move to Manchester, as that was the city where both the largest number of my friends and the most promising intersections of my activist interests were.

I probably could and should have moved to Manchester in September, but a combination of depression, inertia, isolation and indecision, exacerbated by the effect that winter always has on me both physically and emotionally, meant that it took until February for that to actually happen (after several episodes of trying and failing to effect a move, including twice missing out on flats that would have been ideal through inertia and indecision meaning others beat me to it before i could make my mind up). I'm currently sharing a flat with 2 other people, something that after the truly hellish experiences i had in previous shared houses (before the last place i lived in, my first fully self-contained flat, for almost 2 years) i really hadn't thought i would ever do again, and probably still won't do again in the long term, but for a relatively short-term arrangement it's working surprisingly well, and most of my fears about it were unfounded - i definitely think it was worth it for moving from Birmingham to Manchester. The only major problem with it is that it will only last until the end of June, and i really don't know what i'm going to do after that.

I still want to do the MA in Disability Studies at the University of Leeds, but am currently torn about whether to still go for it this autumn or not. I still need to investigate funding possibilities, as my original plan to save up enough money to fund myself was destroyed by the loss of my job (I haven't found any other paid work since, and don't really expect to in the foreseeable future, for a number of reasons). The likeliest option i have found is a Career Development Loan, but i still know little to nothing about the terms and conditions of them. There's also a large part of me that really feels like moving to another new city just a few months after the last time isn't that good an idea, particularly as, while some things have come slower than i hoped/expected them to, i have started to get meaningfully involved in local community projects in Manchester - including a group aiming to set up an autonomous social centre (i am planning at some point to write here about autonomous social centres) - and it would be very likely to feel like leaving Manchester just when things were properly starting to come tgether for me both in terms of personal social life and community involvement. I'm thus considering options including deferring going to Leeds for another year (although given that i've said i'd do the MA "next year" every year for the last 5 years, one does have to wonder at what point "next year" becomes "never"), commuting to Leeds while living in Manchester (which i can't help thinking would frustrate me by putting my academic life and my social/activist life in 2 different cities, when one of the things i passionately want to do in the field of disability is bring academia and grass-roots activism together), and as a bit of a wild card but one i'm not entirely discounting, possibly doing a course i was recently told about at Manchester Metropolitan University instead...

(On that note, i'll plug here an awesome-sounding conference happening at MMU on Wednesday 12th and Thursday 13th May, which Larry is a keynote speaker at and which i've managed to blag a place at: Critical Disability Studies Conference: Theorizing Normalcy and the Mundane. I'm very excited about both far too many of the conference presentations (including many that clash with each other and i really want to go to both!) and the kind of conversations that are likely to happen there...)

I've recently started posting on Twitter, mainly as an outlet for the many, many things that i find interesting enough to want to share a link to, but don't feel able to write actual blog posts about, but also in the hope that it might help me to get better at writing in a less long-winded, more to-the-point way (one of the things that i know have a major effect on the accessibility, or lack thereof, of my writing). I'm enjoying Twittering (if that's the right verb), tho i'm not quite sure if it is having the latter effect (i think a 140-character limit may be simply too short to meaningfully help me practice writing more concisely - a site with a limit of something like 100 or 200 words might be more useful).

I'm probably going to make a few more changes to the format of this blog at some time soon: while it's now much better than it was before, there are still some (relatively minor) things that i'm not quite happy with. I don't think the changes will be massive, though. As far as blog content is concerned, i have quite a few topics i intend to post about fairly soon, and am going to make an effort to post things of decent length at least a couple of times a week over the next month or so. I won't say which topics i'm going to post on next now, tho, as i have no idea which of them i'm going to do first.

I am now 28 years old. I was 25 when i started this blog. It's hard to believe that i've had this blog for almost 3 years, and there are still things that i have intended to write about in it for as long as i've had it, and still haven't got round to. My inertia can be truly ridiculous sometimes. Anyway, my absence from blogging over the last month or so has been mostly because my time and energy has been taken up by finding my way around a new city and getting involved in various offline things, rather than because of anything like serious depression or not wanting to blog any more, which was the main reason for this post. Hopefully (although, as always, this is certainly no guarantee) i will have a couple of more substantial pieces of writing finished within roughly the next week...

The fuzzy boundaries of accessibility

2010-03-23T00:53:00.001Z

This is a thing that i've been thinking about since a couple of conversations with friends (both multiply-impaired, i.e. both neurodivergent and with physical/mobility impairments) about accessible and inaccessible venues: what are the boundaries of the concept of "accessibility"?

Since moving to a new city a month ago (more on which in an upcoming "personal update" post, if/when i get round to writing it), i've decided to firm up my policy of boycotting inaccessible event venues: i don't want to give money to events or buildings that my friends who have different or additional impairments to me couldn't get into. However, while this *looks* simple (at a superficial first glance), if you dig even a little deeper, all sorts of ambiguities arise...

The first friend, who is a performer/activist within the disability arts and disability rights movements, and who is a wheelchair user (mostly for pain and fatigue reasons) but can walk (a group/category who are very often erased in "mainstream" discussions about disability, with it being assumed either that they don't exist or that they are "fakers", with the assumption seemingly being that there could be no legitimate reason for using a wheelchair if one can walk at all - which feeds into stuff about assistive technology that's also been on my mind and will probably be the subject of a post soon), said that ze has a strict policy of not performing at "inaccessible" venues, but sometimes hirself goes to events that are in venues without full step-free access. This surprised me a bit and led to some interesting musings on concepts like "martyrdom" and "self-denial", as well as the comment (paraphrased) "if you think it's unfair on us [wheelchair users] to go to events at venues that aren't accessible to us, don't you think it's unfair of us to go to events at venues that aren't accessible to you as an autistic person?"

When i related this conversation to the second friend, who is a full-time powerchair user with complex physical needs (including severe impairment-related time constraints that there isn't really a social model solution for), as well as autistic, ze replied with "you go to lots of venues that are inaccessible to me", and also commented that true universal accessibility is, in practical terms, impossible, due to the vast variety of different impairments and thus different access needs, some of which will almost inevitably clash with each other, and some of which would be impossible to meet at certain types of events or in certain types of venues without changing the fundamental nature of the event or venue so much as to negate the point of it (which sort of relates to this old post: Pleasure, accessibility and privilege.)

Both these conversations got me thinking: the first about what exactly i consider venues or events that are inaccessible to me, and whether i would expect my friends to boycott them because of that, and the second about whether it really is possible, even if desirable, to have a personal policy of boycotting all inaccessible events or venues. In both cases, the fuzzy, blurry question is - to me anyway - that of where the boundaries of the concept of "accessibility" lie.

It's very, very difficult for me to think in terms of physical places being "inaccessible" for me, simply because i have it so deeply ingrained in my mind that, at least when it comes to a building or an event in a building, "accessible" means "physically accessible", most obviously to wheelchair users (and other people who can't manage steps/stairs), with perhaps things like design issues that affect visually impaired people coming as secondary to that - but accessibility for subtler things, like autistic sensory issues, being a long way off the radar. Like with many things, i find it much easier to agitate for the rights of others than for my own: i've been conditioned to "put up or shut up" about things that make things difficult for me, such as activist meetings held in places with a lot of background noise that plays havoc with my auditory processing, or seating arrangements that make me feel uncomfortable with the angles that i have to look at people (although i think i have got a bit better recently at speaking up about those sort of things in more formal settings, for example appointments with a Disability Employment Advisor at the Jobcentre).

When it comes to things that i feel anxiety about, such as closely packed crowds at music events, decor that makes me feel uncomfortable in shops, restaurants etc. (which has a lot of class, and possibly gender, elements to it too), buses that give me motion sickness, etc., i very much tend to think about them in terms of simply "not liking" them, rather than in terms of accessibility; they tend to register not as things that i *would* "be able" to go to if not for the unpleasant/uncomfortable thing about them, but as things that i wouldn't *want* to go to anyway. Of course, that isn't always necessarily true - there might well be something like, say, a gig by a band i would really love to see, but that's in a really small venue that i know will be so packed with people that it would be impossible for me to comfortably negotiate the crowd, lacking as i do whatever NT-type body language it is that seemingly allows most people to move through crowds of any density without hostility and with most other people happily letting them get past them. But *is* this legitimately an accessibility issue? I know plenty of non-disabled people who don't like and wouldn't want to go to a very crowded event in a small venue, even if their reasons are somewhat different to mine.

Where does the line lie between access barriers and "mere" preferences? No one could reasonably claim that a music event was "inaccessible" to them because it was a type of music they didn't like, but what about, for example, one that would be enjoyable to someone with a certain level of auditory sensitivity if the volume stayed below a certain level, but too much for them to cope with if it went above that level? (And what if the same gig would be considered not worth going to by most other fans of that band or musical genre if the volume *didn't* go above that level? If there was a clash between being "inaccessible" to some people because of too-high volume and "inaccessible" to others because of too-low volume, would it make a difference if in the latter case it was because of a hearing impairment, or simply because the music was aesthetically designed to be played loud?) Is there a relevant ethical difference between events that are designed simply to be "consumed" by an audience (e.g. stage performances) and those that everyone going to has (or should have) an opportunity to actively participate in (e.g. group meetings or conferences)? Perhaps more to the point, is there a relevant ethical difference between barriers to accessibility that could be removed without changing the fundamental nature of the event (e.g. most venue physical access issues) and those (such as sound levels at a music night) that are arguably so intrinsically a part of the event that "removing" or changing them would negate its whole point or turn it into a different event entirely?

(The best post and discussion i've seen on event accessibility, at its widest definition (going well beyond the "standard" or widely-recognised "disabled access" issues, and touching on gender, class and other things as well) is this one by the ever-brilliant cripchick, which can't be linked too widely...)

Questions here, and no answers: i don't know if i'll ever come to a solid conclusion on this. I'd very much like to hear the thoughts on the subject of disabled people with either/both the commonly-recognised types of "access requirements" or/and those that are subtler and less easy to define, though...

One Way Friendships

2010-02-21T02:23:00.001Z

(This is a slight reworking of a post i started writing about a year ago, but didn't get round to finishing at the time, but which i thought it would be somewhat appropriate to resurrect for the next Disability Blog Carnival, of which the theme is "Relationships".)

The opening line of Sarah Kane's groundbreaking and incredibly intense play about depression, identity and psychiatry 4:48 Psychosis (written shortly before her own suicide, and only first performed after her death) is "What do you offer your friends to make them so supportive?"

This is the question that I have always wanted to ask the neurotypical world, and not rhetorically but in honesty. (I still haven't worked out whether Kane's intention was rhetorical or to honestly ask a question to which she genuinely did not know the answer - but, well, 4:48 Psychosis is a work which has such a huge emotional impact on me I find it hard even to talk coherently about it - suffice to say that, when I saw it performed as a monologue by an incredibly charismatic amateur actress in a very small, intimate venue in... I think 2002... I rank that as one of the defining emotional experiences of my life, and Sarah Kane has the rank almost of a deity in my head.) In any case, that line struck such a chord in me, that resonated so powerfully, that I count it as one of the things that brought me out of my denial and onto the path that led me to self-definition and ultimately diagnosis as an autistic person (and my path to diagnosis is something I meant to write about very early on in this blog, but somehow never got round to... after clearing my current backlog of things I want to write about, perhaps I will...)

Part of why it resonated so hard is because of the frustrating path that so many of my friendships have taken. For me, friendship is something incredibly important, in fact quite possibly the central value of my life (I wanted to insert a quote here from a book which I read part of while staying over at a friend's house a few months ago, Valerie Lehr's Queer Family Values, but have been having trouble getting hold of a copy of my own - basically, it's something along the lines of friendship, as an (ideally) equal and reciprocal relationship, being the paradigmatic relationship of a truly liberatory "family values", as the opposite of the hierarchical, non-reciprocal relationships of the patriarchal nuclear family). A core personal principle for me is that I never want to have an intimate relationship with any being which is not as near as humanly possible to entirely equal and reciprocal (hence my not having or wanting either pets or children). Despite this, it deeply frustrates me that, in practice, the majority of my friendships seem to end up decidedly non-reciprocal...

The most obvious way that this manifests itself is that I nearly always seem to be the person always initiating contact in every friendship - I am always calling my friends, but it's very, very rare for any of my friends to call me. In a few cases, I know that that's because people have social anxiety or communication-initiating issues of their own that make it very hard for them to call people, even if they know them well, and that they are genuinely appreciative of me calling them. In a few others, I know that they are the same with everyone, or that they simply never credit their phones because phone conversation isn't very important for them. In others, it's simply that they are busier than I am - but I can't help end up feeling paranoid when in almost every friendship I have ever had, there has been an obvious imbalance in terms of it always being me calling them, with that almost never reciprocated.

(I am currently lucky enough to have a couple of very, very valued friends who do actually call me, in part because I have talked to them about these issues, and that's incredibly important to me - but I still find it hard to believe, due to experience, that any such state of affairs will last very long...)

I have lost many, many friends in my life through this - when I have tried to get through to them for weeks or even months on end, and not succeeded once, and sent texts and emails which have also gone unresponded to, I ultimately, perhaps inevitably, end up simply giving up - although this is harder the more valued a friend they are, as for me deciding not to bother trying to keep in touch with someone any more is a very final and irreversible thing for me. (I also permanently lost touch with quite a few friends when I had my phone stolen a couple of years ago, and didn't have any of my numbers written down elsewhere, despite the fact that I managed to get a new SIM card with the same number, simply because none of them called me, and I was unable to call them.)

The thing is, I have absolutely no idea what a neurotypical person would do in this sort of situation - and I am also half convinced that neurotypical people don't get into that kind of situation in the first place - from my perspective, it seems that there must be rules for obtaining and maintaining reciprocal, mutually supportive friendship which I was never taught, but which most other people must somehow know and follow instinctively. I have no idea, for example, how long it's "normal" to wait for your call to be returned after you have called someone and not got through before trying to call again - but I also strongly suspect that most neurotypical people don't face that dilemma in the first place, because they do get their calls returned - and I don't know why...

There's another form that this non-reciprocity takes, which is subtler and somewhat more difficult to write about. In those friendships which i do manage to maintain, i very often feel like they are unbalanced in a way that always leaves me feeling particularly guilty and self-hating; the direction of support within the friendship, which ideally should be an equal flow both ways, seems to become unilateral. What seems to happen is that either i talk to a particular friend about the worries and problems in my life, with the expectation that they will likewise talk about their worries and problems to me, but for some reason that reciprocity doesn't happen, and they simply don't tell me about theirs, leaving that aspect of the friendship as a one-way thing when that was never my intention, or, in the more insidious form of it, every conversation i have with a given friend seems to end up developing into a one-way advice-seeking session, in which my problems become the whole focus of the conversation and theirs do not even get mentioned - again, without me ever having intended that that happen. (I've even - more than once - had cases where the purpose of a meeting or a conversation was for me to try to be somehow useful or helpful with some difficult situation going on in a friend's life, and i brought up something from my life as a potentially-helpful parallel, and that ended up turning the conversation into one about my problems...)

It's hard for me to describe exactly how this role-switch happens, or even for me to verbally describe the "roles" themselves (except by analogies to "professional" relationships like counsellor/client, which is a train of thought i'm not particularly keen to follow), but it is always apparent to me, and always deeply frustrating, when it happens - but, once it has started happening, i seem bizarrely powerless to reverse or stop it without ending the whole conversation (and probably in doing so strengthening the impression that i am "the one with the problem").

The way this leaves me feeling is as if i am somehow an inherently "parasitic" person - one who is doomed to "take" but never "give" in every relationship - despite my strongest desire being to "give", to be "useful", to provide something of genuine value to a person who i am in a valued relationship with. This reminds me of what i have heard people - often those with vaguely spiritualist or "New Age" leanings - describe as "psychic (or "energy") vampirism" - and makes me wonder if many of the people so described - often in extremely damning terms, such as in this article (warning: don't read if you are allergic to woo) - are actually intentionally "draining energy" from others at all, but rather suffering from a clash-of-neurotypes communication problem. (I believe i've heard of people - possibly in the Goth subculture - actually self-identifying as "psychic vampires" - but couldn't find any first-person accounts from such people, although i'd be interested to.)

I'm left stumped as to why this happens - possibly due to non-verbal cues (that i'm in all probability not even aware of) being misinterpreted by the other person? or to some aspect of my verbal "style" (word choice, sentence structure, etc)? I think one part of a reason for it may be issues related to "empathy", as i wrote about here, but am not sure if that's particularly helpful in trying to lessen or avoid it. I think another reason for it might be that my need for social interaction in general seems to be a lot higher than many people's (including both autistic and neurotypical people) - to extend the vampire metaphor, it reminds me a bit of the recent film Daybreakers, which features vampires who remain fairly "human" as long as they get a steady supply of blood, but if deprived of it rapidly mutate into monstrous-looking, feral beings apparently lacking in human sentience, which resonates with me because of just how strongly i feel like i am falling away from humanity if deprived of contact and conversation with other people.

(There are also things i want to say here, that feel vaguely related to this post, about how a basic ethos of helping/serving others can very easily get twisted into something deeply unhelpful, and the probable influence of Christianity on that in my case, but i think i'll save that for another post.)

So... i'm kind of wondering if any other autistic people might experience this phenomenon, particularly in friendships with non-autistic (not necessarily neurotypical) people - and, if you do, if you have found any effective ways to deal with it. My active hope remains for fully equal and reciprocal friendships, and i have some which it would be reasonable for me to believe are such, but i think the nagging paranoia is always likely to remain that in all my friendships, i "take" and don't "give". Tentatively, i think that this sort of difficulty is less likely to develop in autistic/autistic friendships than in autistic/non-autistic ones - but then, i have sometimes encountered situations with other autistics where it feels like there is a double dose of communication barriers rather than a neutralising of such barriers...

Even more tentatively, i wonder if discussion among autistic people about how to deal with these sort of issues might eventually lead towards developing an entirely new "autistic model of friendship", which might function very differently from what most neurotypical people see as a functional relationship between friends. Posts like this one, and the kind of autistic communities that are slowly developing out of events like Autreat and Autscape, give me hope that such a radical remodelling is possible, but i'm still a long way from knowing what exactly it would look like. Possibly even the concepts of equality and reciprocity in friendships that seem so important to me might actually come from a neurotypical-centric set of values that does not take into account neurodiverse ways of relating to others.... i don't know. It's difficult for me to even speculate that far. Anyway, if anyone is reading this who has been frustrated by the non-reciprocity of my friendship, then i want you to know that this is very much unintentional, and any suggestions for how to make our friendship(s) more reciprocal would be very positively received.

Another quick template/code-related request

2010-02-21T01:04:00.002Z

While checking whether i'd already posted anything about a subject peripheral to a "proper" post i'm working on, i realised just now that i now don't have the "search blog" option that most Blogger-hosted blogs have, which might make it more difficult for people to find anything particular that i've written about any given subject (um, that is, if anyone wants to).

(Yes, i'm aware that if i want to search for posts containing a particular word or phrase on this blog, i can simply go to Google and type in site:biodiverseresistance.blogspot.com [whatever i want to search for], but not everyone knows about things like Google's "site:" option, and having a visible search box makes it simpler and more intuitive IMO...)

So, does anyone know the HTML code for the Google/Blogger search box, and where i would need to insert it in my template?

(Apologies for probably embarrassing HTML-cluelessness...)

Help request re comments widget

2010-02-19T12:20:00.003Z

I got a lovely email from the equally lovely Kowalski of Here Be Dragons (formerly Turner & Kowalski, and a blog which i keep forgetting to add to my blogroll, so before i forget i'll do so now) the other day, informing me of a better "recent comments" sidebar widget than the default Blogger "feed" option, which gives a link to the post that each recent comment was on, rather than simply to the comment itself: the code for the widget is here, and an example of a blog which uses it is this one.

However, when i pasted the code into my blog's HTML, replacing the code for the existing "most recent comments" feed (and, as per the instructions, replacing "YourOwnB1og.blogspot.com" with "biodiverseresistance,blogspot.com"), and attempted to preview the changes, i get the following error message:

Your template could not be parsed as it is not well-formed. Please make sure all XML elements are closed properly.
XML error message: Open quote is expected for attribute "{1}" associated with an element type "style".

I'm not sure why this is happening, as when i saved the code as a .txt file and then opened it with Firefox, it showed exactly what it was supposed to, with the actual most recent comments on my blog. So, does anyone know what i'm doing wrong here?

Taking on the Triad

2010-02-04T16:15:00.002Z

I've been meaning for a while to post about the changing "official" diagnostic criteria for autism. There are going to be some significant changes to how the autistic spectrum is going to be classified in the upcoming DSM-V, which i'm (probably) going to cover in another post, but what i'm specifically concerned with here is the "triad of impairments", held by many professionals and bodies including the UK's National Autistic Society to be the fundamental defining characteristics of autism as it is currently conceptualised (at least by the psychologist and neurologist establishment, if not actually by the autistic community).

As currently constituted, in its simplest form (as described on the NAS's "What is Autism?" page), the "triad" consists of:"difficulty with social communication", "difficulty with social interaction" and "difficulty with social imagination", while additional "related characteristics", not part of the "triad" itself (and hence presumably not seen as necessary for establishing an autistic spectrum diagnosis) include "love of routines", "sensory sensitivity", "special interests" and "learning disabilities". Essentially the same information is repeated in varying amounts of detail in several other pages on the NAS website, such as here and here, where it states "A range of other problems is also commonly found in association with the triad but the three basic impairments are the defining criteria." The origin of this definition is usually regarded as a 1979 paper by Lorna Wing (a co-founder of the NAS) and Judith Gould, as referenced here (Google cached HTML version of a Powerpoint file).

IMO, the existing "triad of impairments", even with the additional "related characteristics" (which seem somewhat awkwardly tacked on, as if those responsible were themselves aware that their "triad" was incomplete, and more elements were needed to fully describe autism as a meaningful entity), fails at defining autism both by inaccuracy in what it does contain and by failing to include many of what autistic people consistently report as among the most significant components of what distinguishes us from neurotypical people.

Firstly, while few if any autistic people would deny that they experience difficulties with "social communication" and "social interaction" (at least with neurotypicals!), that third element, "social imagination", is much more contentious. Many different autistic writers have challenged the assertion that autistics "lack imagination", both with regard to the "theory of mind" idea (which i won't directly take on here, but will link to excellent posts about by several other autistic bloggers... and of course this from the incomparable ISNT), and with regard to the allegation that autistic children do not "pretend play" or otherwise "imaginatively play" (many of my earliest memories are of pretending to be various animals or fictional characters for my childish amusement, and slightly later in childhood i concocted very many long and elaborate fantasies in which i "played" many different characters, often simultaneously - and i'm very far from the only autistic person i know with similar childhood experiences; in fact, i'd probably even say that, from the anecdotal evidence i've heard, autistic kids are more likely to be heavily into that sort of imaginative play than neurotypical kids!), while many would argue that other aspects of the "impairment of social imagination" as described by the NAS better fit into the categories of "social communication" and/or issues related to sensory processing (on which see a bit further on in this post).

Secondly, there are at least 2 very major aspects of autism as experienced by actual autistic people (each of which is probably as large in scope as the whole social interaction/communication/"imagination" triad put together) which Wing's triad leaves out altogether - namely, executive function issues (including the well-known "autistic inertia", which, while aspects of it are often mischaracterised as "social anxiety" (among other things), has nothing at all to do with social interaction, communication or imagination, at least as far as i can tell from my own experience of it) and sensory issues (including sensory overload and all the vastly varied and well-documented differences in sensory perception and processing between autistic and neurotypical people).

Thus, if i got to define the diagnostic criteria for autism, i would propose an almost entirely different triad of impairments, consisting of the following 3 components:

1) Communication impairment

This category, IMO, would include most if not all of the valid parts of all 3 elements of the traditional(?) triad (as i don't really see any meaningful dividing line between the categories of "social communication" and "social interaction", and most of the "social imagination" stuff that i actually agree exists also seems to be more about difficulties with (perhaps more receptive than expressive) communication than anything else). Other things it encompasses would include difficulties with use of language (such as my issues with pronouns), difficulties with interpreting and/or producing nonverbal forms of communication (gesture, vocal intonation, facial expressions, etc.), "literalism" and difficulties with understanding metaphors, euphemisms, etc., [others?]. As such, this is possibly the broadest or "biggest" category of autistic impairment, and certainly the one most traditionally identified as synonymous with autism to the extent that the other 2 major aspects often go completely unrecognised in both medical and popular discourses about autism, even though they are just as consistently reported within the autistic community.

2) Executive function issues

This includes a very large percentage of the "non-social" aspects of autism, one of the main ones being the aforementioned autistic inertia , but also things like difficulties with planning and organisation, time perception/time management, [others?] and, IMO, many of the traits often attributed to "attention deficit disorder", but which are found (in my experience) as much in autistic people as in people diagnosed with AD(H)D (although, of course, many people are increasingly diagnosed with both an autistic spectrum condition and AD(H)D, and just as many autistic people have some traits typical of AD(H)D, many people with AD(H)D have some autistic traits, meaning that there is a strong argument for regarding both as (at least sometimes) part of the same spectrum). I also suspect that much of the archetypal autistic "need for routine" and "ritual" repetition of acts or words/phrases is related to executive function issues as much as if not more than to communication impairment.

3) Sensory processing issues

As well as the obvious examples like sensory overload and sensitivities to specific stimuli (light, pressure, temperature, particular tastes or textures, etc.), this category would include a huge number of other sensory issues which, if not currently part of the diagnostic criteria for autism, are consistently associated with autism: synaesthesia, prosopagnosia ("faceblindness"), deficits or differences in proprioception (which leads to many of the issues with physical coordination which exist in the overlap between dyspraxia and autism), and [others?]. Some autistic people have argued that all of "autism" is ultimately due to sensory processing issues (for example, that the difficulties autistic people have with nonverbal communication actually result from atypical auditory and visual processing making perception and interpretation of it difficult, rather than from a difference in the communication-related parts of the brain per se), but to me that theory seems overly reductive, and there's also the issue that there are some autistic people who don't report sensory processing difficulties: however, while i'm not entirely convinced that every aspect of autism is sensory in nature, i do think it's a major and difficult-to-deny part of it.

All of these 3 aspects of autism demonstrably overlap with each other - for example, prosopagnosia and the notorious issues with "eye contact" (a bizarre phrase to me, with the image it conjures up of people's eyes actually touching each other...) are in the overlap between sensory processing and social communication, attention-deficit issues are very often an overlap between sensory processing and executive function, and difficulty with initiating conversation or other social interaction can be partly due to communication difficulties and partly due to inertia/executive function issues - but nonetheless i think most if not all widely-recognised aspects (or "symptoms" as the DSM types would doubtless say) of autism (that i can think of, anyway) fall into at least 1 of these 3 broad categories, or can be explained as an interaction between them.

(Of course, it's also very much worth pointing out that dividing autism up into any 3 "sections" is itself thoroughly arbitrary, and by conceptualising things slightly differently it could probably just as easily be split into 2, 4 or any other number of major aspects - it's purely because of the existing phrase "triad of impairments" that i've chosen 3 as the number to go with here...)

A problem with this suggested "New Triad" is that some autistic people may not have, or feel they have, all 3 aspects of impairment or difference. However, that's equally as true, if not more so, of the "original triad" - in particular, very few autistic people i know would agree with the "social imagination" element of it - and my guess would be that a substantial majority both of those "officially" diagnosed as on the autistic spectrum and of those self-identified as autistic - which it's worth pointing out are not identical sets, as both misdiagnosis of people with other conditions as autistic and missed diagnosis of very clearly autistic people exists - have at least some elements from each of these 3 categories.

Also, as is often neglected, the whole "autistic spectrum" is itself an ambiguous section taken out of the much, much larger spectrum of human neurodiversity, with very arbitrarily drawn boundaries, and with diagnostic categories generally considered both within and outside it overlapping with each other to the extent that the same person can easily get different diagnoses from different "experts", making it very much possible for people to have some autistic traits without "being autistic", or conversely to "be autistic" without having all of the recognised autistic traits. People with many other diagnoses such as dyspraxia, AD(H)D, "nonverbal learning disorder" or "semantic-pragmatic disorder" (the latter of which, as far as i understand it, seems essentially to mean "autism without significant sensory issues") may fit wholly, partially or not at all into any particular set of diagnostic criteria for autism. Therefore, if i got to set a "reasonable" diagnostic guideline, i would say that anyone who exhibits at least 2 of the 3 primary areas of impairment and is not better served by a different diagnosis can be classed as "autistic".

Of course, this raises the point that "autism", as a diagnostic entity, is almost certainly not one "thing", so much as a convenient term for a group of traits/symptoms that commonly go together, but may have separate origins and/or be present in different people for different reasons - probably including genetic causes in some cases, organic brain damage (occurring before, during or after birth) in others, and perhaps other factors as yet unidentified. (Some people have argued that, because of this, "autism" itself is not a particularly useful term - however, IMO, it describes a coherent enough set of characteristics to be useful regardless of the common etiology or otherwise of those characteristics, as well as being an important enough part of a very large number of people's identities that there would be massive (and justified) resistance to any attempt to scrap the term altogether.)

(I want to say something here about the common conception of diagnostic entities as somehow discrete and "immutable" natural categories, whereas in fact their existence is dependent on human identification and description, and therefore culture-bound, but don't seem to be able to express it in a way that doesn't sound more postmodernist/relativist than i'm happy with... maybe in another post...)

A corollary of this is that, because "autism" is not a fixed and immutable category but one which is defined by consensus, contains blurry edges and overlaps with others, there is probably no individual trait which every single autistic person has, and that possession of any particular individual "autistic trait" does not in any way imply possession of any other. However, i'm fairly confident that everyone or very nearly everyone who finds it useful to self-define as "autistic" will fit broadly into at least 2, and more likely than not all 3, of the categories outlined above. (If anyone feels otherwise, i very much welcome your thoughts on it...)

(Now i've written this, i'm wondering what sort of formal research/evidence would be necessary to try to turn it into some sort of formal proposal to the NAS (or whoever is the most appropriate "authority") to redefine the "triad" - if of course there's sufficient autistic-community support for it. Any ideas?)

Active vs Passive Identities

2010-01-18T03:37:00.008Z

The starting point of this is the conversation between me and Option C at this post, which went far enough from the post's original topic that i thought i ought to separate it. It's also inspired by the comment thread at this recent post about "passing" at Questioning Transphobia, which reminded me that, while i have written about "passing" before, there were aspects of it that i hadn't covered and that post, and i'd intended to return to those at some point. Some of those aspects will be covered here, while i may cover others that don't really fit in here in a future post (as i seem to say about everything...)

One of the difficulties that i see affecting a lot of conversations about identity issues is an often-unexamined failure to distinguish between two very different ways of seeing "identity" - namely, active identity (a person actively identifying as something) and passive identity (a person passively or unintentionally being identified as something by others). This can cause a lot of confusion, frustration and perception of things people have said as intolerant or offensive - when they weren't at all intended that way - because they used a "passive" rather than an "active" definition of a particular identity and were assumed to be using the other one.

The areas i've particularly noticed this happening (probably because they're my main areas of interest in identity politics - i'm sure it happens with regard to other areas of identity as well) are gender and disability, so that's (mostly) what i'm going to discuss here. In the gender context, it mostly comes up with regard to terms like "gender variant" or "gender non-conforming", and who is included within them. As i said in my first comment at Option C's post, i can easily see cases both of people who do not see themselves as "gender non-conforming", but are seen by others as such, and of the exact opposite - people who do see themselves as "gender non-conforming", but are not (or not always) seen as such by others - with myself as a probable example of the latter category. (An example of the former could be a transsexual woman with a "traditionally feminine" gender identity who does not "pass" as a cis woman, or a transsexual man with a "traditionally masculine" gender identity who does not "pass" as a cis man [see below for clarification of what "passing as" actually means... and yes, i'm aware that the terms "traditionally feminine" and "traditionally masculine" are problematic, but i couldn't think of a better way to express it in that sentence] - who would see themselves as conforming, internally if not externally, to the gender role/expression mostly associated to their sex identity, but would still be likely to be seen by others as having a "mixed" or "variant" gender expression. An example of the latter could be someone who - like myself - identifies as non-binary or genderqueer, but (in my case mostly unintentionally) happens to prefer to dress in a way that superficially fits with the gender role/expression mostly associated to their assigned or apparent sex - who would feel that they are not - or at least not intentionally - conforming to any gender, but would be seen as passably gender-normative by a casual observer.)

This reminds me of how, in my teenage years, i classified the people i knew into 4 categories with regard to the then-current "mainstream" teenage culture: 1) those who both wanted to conform and easily could conform to "mainstream" norms of dress, appearance, musical taste, speech patterns, etc., 2) those who didn't want to conform to the "mainstream", but could easily have conformed if they did want to, 3) those who wanted to conform, but couldn't conform easily or at all, for reasons beyond their control, and 4) those (like myself) who were likewise incapable of conforming, but had no desire to conform anyway. (It's interesting that, long before i was diagnosed as autistic or even knew about autism, i recognised that for me (as for some others i knew, a few of whom i wouldn't be at all surprised if they also turned out to be autistic), conformity to mainstream social norms was very much inherently impossible, while i could tell that many of the other "culturally alternative" young people i knew could, very easily, have been a part of the "mainstream" social group if they had wanted to.)

(Edit: I decided to make a Venn diagram to illustrate the above paragraph, just in case it wasn't clear.)

(2nd edit: i don't seem to be able to make the image any bigger in the post without making the text blurrier. If you click on the image, you can see it at full size, which is 950 pixels wide.)

Those people - the category 2 people - i admired, but also felt envious of, and even possibly a little bit bitter or resentful towards, because, even if i didn't want to take those opportunities, i was still keenly aware that they had social opportunities that i didn't and would never have - what i didn't then, but do now, recognise as privilege. The people who, however, i really felt bad for (in what was very probably, although unintentionally, a horribly patronising way), and thought had by far the worst deal in the whole "mainstream vs. alternative" teenage culture war, were the people in category 3 - those who shared the cultural values of the mainstream, but were not allowed into it (including many disabled, especially "learning-disabled", young people who were very much into the chart pop music, soap operas, clothing brands, etc. that were mainstream at the time, young people from ethnic groups with particularly strict parenting cultures whose parents wouldn't let them do the "mainstream" things their classmates did, those too poor to afford the requisite clothes and other trappings of conspicuous consumption to be accepted into the mainstream social groups, many fat or otherwise not-conventionally-attractive young women, and probably others). As someone firmly in category 4, it was hard not to see the people in category 2 as suffering from some sort of "false consciousness", and to think that they would be much better off if they could view the mainstream culture more critically and move into category 4 (where they would also be accepted by at least some of those in category 3) - so i can easily relate to, if not agree with, the same attitude expressed (among other examples) by radical feminists who argue that all women who put effort into "feminine" gender presentation, even though it is impossible ever to completely live up to the patriarchal expectation of female appearance, are suffering from false consciousness, or by some "subversivist"* genderqueer activists who regard those who openly and visibly defy norms of gender presentation as somehow inherently "more ethical" or "more radical" than trans people with "binary" gender presentations, who are seen as "reinforcing the binary".

*I have issues with this usage, but haven't got space to address them in this post.

However, if we are going to define all those who are not part of the "mainstream" culture (with regard to gender or anything else) as "non-conforming", this sets up a problem: IMO, it's unfair to both groups to put people in the equivalents of categories 2 and 3 in one box. It could be argued that category 3 are the only true "non-conformists", as they are the only people who had the choice to conform or not and chose not to, but that conflates categories 2 and 4 and, IMO very offensively, writes them off as worthless to the anti-conformism cause, effectively saying that only those with the privilege of being able to conform to those norms if they wanted to can be true activists against oppressive norms: i think anyone with even the most basic understanding of anti-oppression politics can see just how fucked up and wrong that is. A possible response to that is to say that only those who cannot, by their nature, conform to socially imposed norms can truly oppose them... but that's problematic too, as it sets up an essentialism in which members of the privileged group can never be anything but oppressors - dooming marginalised people to perpetual "outsider" status, and not really allowing any framework for the dismantling of structures of privilege themselves - and by implication erases the desires and identities of those who would like to conform, but cannot.

So, what's the solution? The only way i can see to untangle this is to recognise that there are at least 2 different axes of "conformity" and "nonconformity", only one of which meaningfully maps onto privilege/oppression. The difference between these axes is the difference between "active" and "passive" identity (and i think that this applies to more aspects of identity than those which are defined relatively to social norms, but has to involve aspects of identity which are subject to the perception of observers). With regard to gender, we thus have two possible definitions of "gender-variant" or "gender non-conforming" - A) people who identify themselves as anything other than one or other of the "normative" binary sexes and the gender identities and expressions that are "supposed" to go with them (however others see them), and B) people who are seen as anything other than one or other of the "normative" binary sexes and the gender identities and expressions that are "supposed" to go with them (whether they see themselves that way or not).

In response to definition B, i'll quote Option C's response: I really dislike it when people use passive definitions to identify others, personally... A couple main problems I have: First, people are, by nature, active participants in defining their identity. It's impossible to define identity in the absence of this fact - or, at least, you run into all sorts of philosophical problems about defining where the passive individuals somehow are able to aggregate into an active identifying agency. Second, it's inconsistent by nature - if many groups of people experience someone's identifier differently (out as bi in X, but straight in Y, unknown in Z, etc.), is that person now all of these things simultaneously, and how is this even verified? It seems clear to me that the best solution is that the person is what ze identifies as.

I broadly agree with this, and so i see definition B as inadequate. However, the category of people described by definition B clearly exists, so it is, IMO, necessary to have terms with which to talk about it. A better way that i can see of conceptualising this category is as the category of people who are subject to oppression on the basis of (perceived) non-gender-normativity. This group of people clearly has common interests (i.e. in the ending of such oppression), which overlap with, but are not necessarily identical to, the common interests of the group of people who identify as non-gender-normative (not all of whom may necessarily be oppressed as such).

Something very similar, if not identical, occurs with disability-as-identity - there are many people with impairments who do not consider themselves to be "disabled" (often because of the perceived stigma attached to the term), although they do experience "disability" as defined in the social model* as "the restrictions caused by society when it does not give equivalent attention and accommodation to the needs of individuals with impairments" - so are those people "disabled people"? Yes for an experience-of-oppression-based definition, but no for a self-identification-based one. (Interestingly, as noted in this thread from 2006 on the BBC Ouch! message board, the UK's Disability Rights Commission has chosen for essentially this reason to use the term "people who have rights under the DDA" (Disability Discrimination Act, which defines disability in a mostly-medical-model way centred on impairment) rather than "disabled people", except in the context of (self-defining) "disabled people's organisations".)

*Apologies for lazy Wikipedia usage here. I know there are better links to concise descriptions of the social model, but for some reason tonight i couldn't find them. I think the Wikipedia quote is adequate, though.

One major aspect of all this IMO is that choices that should be value-neutral (such as whether or not to actively identify with a group one is or may be perceived by others as belonging to) are made not-neutral by living in an oppressive society which is set up so that, whatever we do and however we identify, some of the choices we make will end up inadvertently supporting (or at least being perceived by others as supporting) structures of oppression - a phenomenon that i have also noticed in many other places (for one example, BDSM relationships in which a male plays a dominant role and a female a submissive one) - so what can be done about it? Asking people to change or police their choices - as the radfems do with regard to BDSM and "normatively-feminine" gender presentations (among other things) and the "subversivists" do with regard to binary-identifying or binary-presenting transsexual people - is clearly not acceptable in any even vaguely libertarian perspective, as it's against the most basic principles of individual freedom and autonomy - but, as far as i can tell, that leaves the only real answer as to work towards changing the wider society into one which doesn't oppress people based on either chosen or unchosen identities - which obviously is what we are all (or all should be!) fighting for, but which also feels kind of inadequate in the here and now...

And i wanted to say more here, including something about "passive" and "active" verb constructions in English, and the ambiguity of the verb "to pass" (in a "passing as..." context), but a) i'm knackered and need to go to bed (and want to post this now as i've got a lot to do tomorrow), and b) this is already well over 2000 words, so i'll leave it here for now. Potentially more later...

Link and debate request: the usage of "neurodiverse" and "neurotypical"

2010-01-17T01:31:00.003Z

This is to point people to a comment thread elsewhere rather than to start one here, hence me setting comments to "off" on this post.

New blogger Option C (who says that i inspired hir to start blogging! w00t! :0 :) ) has a very interesting post about the terms "neurodiverse" and "neurotypical", which i think is an extremely important debate. I've replied to it there, so i won't say any more about my thoughts on it here, but i think ze raises some points very much in need of addressing about the ambiguous and potentially problematic nature of those terms.

I might well post on the issue myself once i've got my thoughts a bit more coherent about it (as, indeed, is true of most of the things Option C's posted so far...) Go check it out.

Drugs, anti-psychiatry and cognitive liberty: transcending "social vs. biological"

2010-01-11T02:47:00.003Z

(If this comes across as oddly paced or repetitive, it's because it was originally written in 2 parts which i was initially going to post separately, but then combined together - i might not have been quite as "seamless" about it as i wanted to be...)

I've read 2 recent posts on SSRIs with very different perspectives - one at FWD/Forward and the other at What Sorts of People, linking to this article called "5 reasons not to take SSRIs" by Lennard Davis. Both are interesting to me in as much as i'm currently, at least vaguely, looking into the possibility that SSRIs might be worth trying for me to help deal with some aspects of my depression, but that's not what this post is about so much as the frustrating way that discussions of anti-depressants (and psychotropic drugs in general) seem to fall into "pro" and "anti" camps. (I should also give Urocyon's recent post on the subject credit for getting me thinking about it.)

I have always had a strong emotional attachment to anti-psychiatry, partly because it was one of the foundational building blocks - long before i encountered such concepts as the social model of disability, transgender liberation, or indeed even anarchism/libertarianism - of my radical politics. (I am, however, pretty critical of many of the "big name" figures in anti-psychiatry, and think the relationship between it and the neurodiversity/disability rights movement(s) is sometimes problematic and often ambiguous. This will probably be covered more in future posts, tho.) The trouble with many of the more prominent sections of the anti-psychiatry movement is their blanket anti-psychotropic-drugs position (for a concise example see Douglas C. Smith here), which, while Davis doesn't explicitly take it in that article, he certainly can be read as supporting.

Where this seems to come from is a version of the (prevalent to the point of being almost unquestioned by many people in present-day, "mainstream" Western society) dichotomy between the "social" and the "biological", which both mainstream psychiatry and the anti-drug strand of anti-psychiatry seem to regard as mutually exclusive categories. Opinions on the "causes" of depression (or mental distress in general) become polarised into 2 extreme positions - either it's entirely biological/chemical in nature, caused by imbalances of hormones, neurotransmitters, etc., and therefore the only effective treatment is pharmaceutical (with, if you're lucky, a side order of diet and/or exercise), or it's entirely social in nature, caused by problematic interpersonal relationships at either the individual/family or wider society level. Both these positions intensely frustrate me, because neither of them allows for the possibility that - shock horror! - it might be sometimes one and sometimes the other, or even - unthinkably - sometimes both...

I understand why most radical critics of psychiatry tend to fall for the latter position - it is undeniable that Capitalism in the form of the pharmaceutical industry and State repression in the form of coercive psychiatry and the institutional system collaborate in the forced drugging of neurodivergent and/or distressed people (just as in different forms they collaborate throughout modern state-capitalist civilisation). It also superficially fits well with the social model of disability to locate the roots of unhappiness in society rather than in the individual (although only, IMO, if one doesn't fully understand the distinction between "impairment" and "disability"). But it's also worth noting that approaches to the "treatment" or "management" of mental distress that regard it as social or interpersonal in origin - such as the many and varied forms of counselling, psychoanalysis, cognitive behavioural therapy, etc. - can be as easily, and have been as often, corrupted into individualising, victim-blaming forms to serve paternalistic and authoritarian ends as biochemical approaches (for just one example outside a state-coercion context, see here, but it's been done plenty of times by states too).

This also strikes me as parallel to the equally frustrating recurring "nature/nurture" debates about queer and trans identities, with regard to whether sexual orientation, gender identity, etc., are biologically innate or socially constructed. In both cases, anyone aiming for a joined-up, radical liberation politics will get fatally sidetracked if their argument depends on it being either - because, as i've written before with regard to sexual orientation, ultimately, if you believe in liberation and acceptance for all, why should it matter?

Therefore, anti-psychiatry does not have to mean anti-drugs, and the reduction of the concept of anti-psychiatry in the public perception to merely opposition to anti-depressants and other psychotropic drugs is in fact deeply harmful and trivialising of the serious and powerful critique that, IMO, a synthesis of the various strands (libertarian, Marxist/post-colonialist, and feminist) of it offers to many of the foundations of modern, "mainstream" Western society. Unfortunately several of the more prominent groups in the anti-psychiatry movement, such as Mindfreedom International (which, i hasten to add, i thoroughly support in all their core aims), for the reasons i've outlined, tend towards not just an "anti-forced-drugging" but a blanket "anti-drugs" direction, which is probably most exemplified by Peter Breggin - possibly the best-known currently active figure in anti-psychiatry - who has essentially made a whole career out of attacking (often justifiably, it has to be said, but rather unilaterally) SSRIs, stimulants like Ritalin, and other doctor-prescribed psychotropic drugs. However, Breggin's views on autism show that his opposition to such drugs comes not from anti-coercion principles, but from the false ideology that mental distress and/or neurological difference (which he conflates just as much as the dominant paradigm of psychiatry does) are "all social, never biological", which leads him to regurgitate the same old, offensive and disproven "blame the parents" theory espoused by the likes of Leo Kanner and Bruno Bettelheim (with his "refrigerator mothers") - which does as much genuine harm to autistic people and their families as forcibly drugging them does.

In Mindfreedom's case (as Amanda Baggs covers in this excellent post), the blanket anti-drug stuff is essentially just a veneer on top of a basically sound core of opposition to the oppression inherent in a paternalistic, coercive psychiatric system (and has also been toned down noticeably with the most recent overhaul of their website, although their "Knowledge Base" is still heavy on the information - which is massively important and necessary - about the dangers of psychiatric drugs), but as far as people like Breggin are concerned, because of their acceptance of false dichotomies, opposition to drugs seems to have become more important than opposition to coercive psychiatry itself.

Far from being part of the fight back against state paternalism, telling all people with mental distress and/or cognitive impairments that they should never take any prescribed drugs, even if they experience desirable effects (which, incidentally, might well not be the same effects that the prescribing doctor intended them to have, given how much of a crapshoot such things are) from them, is paternalism! It also shades seamlessly into the very ugly pop-cultural tendency to deny the real existence of mental distress or to assert that every problem can be beaten using only "positive thinking" or other kinds of magical bullshit, which - as genderbitch deconstructs magnificently here - comes from the nastiest and most ignorant forms of non-disabled privilege.

Both the blanket pro-drug and the blanket anti-drug positions fail at liberation for the same reason - that they presume a single truth to be applicable to all people who are experiencing mental distress, and prescribe an exclusive range of possible solutions (either always drugs, as necessary if not sufficient, or a somewhat wider, but still by definition exclusive, class of approaches not involving drugs)... yes, we're back to prescriptivism - which has no more place in the movement against coercive psychiatry than it does in any other liberation movement.

It's also a logical fallacy to assume that SSRIs and similar drugs are somehow inherently "evil" and coercive simply because they are used, pushed and prescribed primarily in a coercive manner in the society that we currently live in - just as it's equally illogical to assume that recreational drugs like cannabis, LSD or MDMA ("ecstasy") are either inherently "evil" because they are illegal and therefore linked to violent crime, or inherently "good" because the statist-industrial complex represses them and persecutes people who use them. In any logical libertarian way of looking at things, "mind-altering" substances are in themselves ethically neutral, regardless of whether they are presently promoted or prohibited by the ruling system - yet it can be surprisingly and frustratingly difficult for me to explain - even in "left-libertarian" circles - that my opposition to forced drugging isn't about the effects of the drugs themselves - although those effects can seriously fuck people up, including leaving people with serious impairments, both physical and cognitive, that they didn't have before - but about the fundamental principle of autonomy - it would be wrong, because a violation of an individual's autonomy over their own mind and body, to forcibly drug someone even if the effects of that drug were wholly beneficial.

(In fact, as a generalised maxim, about the only thing [or class of things?] that i think is inherently "wrong" is that which is done to sentient beings without their consent. I also think that's about the only usefully workable definition of the concept of "evil".)

The concept which transcends the false dichotomy of "pro-drugs" and "anti-drugs" positions is that of cognitive liberty (see also the Center [sic] for Cognitive Liberty & Ethics' FAQ on the subject). Defined as "the right of each individual to think independently and autonomously, to use the full spectrum of his or her mind, and to engage in multiple modes of thought", cognitive liberty ought to be central to any (whether "left" or "right") libertarian politics, and yet it's shocking and deeply disappointing how often i see positions antithetical to it held by people who honestly consider themselves libertarians.

Thankfully the concept of cognitive liberty has been combined with anti-psychiatry. Notably, Ken Kesey, author of the great anti-psychiatrist novel One Flew Over The Cuckoo's Nest, was a prominent advocate of the recreational use of hallucinogens and other drugs, yet his novel is one of the most powerful attacks on the fundamental authoritarianism and human-diversity-destroying aims of psychiatry [whether or not you regard it as using the psychiatric institution as a metaphor of wider American/Western society - which i certainly think is a valid reading, but IMO one which doesn't preclude more literal readings from being valid as well) ever written, as well as the only novel which, for me, really expresses - in ways i couldn't begin to describe in words - the true horror of paternalism in action and of the "for your own good" justification for oppression. It's also notable that OFOtCN can be seen as something of a distillation of both major early strands of anti-psychiatry - the "right-libertarian" strand exemplified by Thomas Szasz, with its motif of comparisons to state-socialist totalitarianisms (see McMurphy's several comparisons of the hospital to a "Red Chinese prison camp"), and the vaguely Marxist/"leftist" but also vaguely "New Age"-influenced existentialist approach of the likes of R.D. Laing (which, incidentally, was the original "anti-psychiatry", despite the fact that the term tends to be identified more with Szasz's libertarian approach in current usage).

(I'll note that while One Flew Over The Cuckoo's Nest is among the novels that have most profoundly influenced me on a huge number of psychological, ideological and conceptual levels, i'm fairly sure there are aspects of its treatment of race, gender and perhaps other identity issues that deserve serious critique - i'd love to see Native American perspectives on the character of "Chief Broom", for example - but this is an aside for now, as this post wasn't intended to be about Kesey or OFOtCN as such...)

(I should also note that Szasz, for all his faults (which i'm going to discuss in another post at some point), supports the right of individuals to take all the drugs they want, even though his criticisms of the effectiveness of the drugs mainly prescribed by psychiatrists at the time probably formed some of the foundations of the present absolutist anti-drug position among much of the anti-psychiatry movement.)

As a final point that i think brings me nicely full circle, a bit of looking around Lennard Davis's site brought me to Project Biocultures, which appears to be doing exactly what i think is most necessary to get past ideological traps such as the unhelpful "pro-drugs"/"anti-drugs" dichotomy - crossing those boundaries in order to break down "the artificial separation of categories of science, medicine, technology and the social sciences and humanities", while also attempting to break the barriers between the top-down world of academia and the marginalised people who are likely to be its "subjects". In many ways, disability (including "mental health" and neurodiversity) stands right at the most crucial intersection between the "two cultures" of "science" and "the humanities", the "objective" and the "subjective", the social and the biological - and neither a purely social, nor a purely biological, perspective, but only one which transcends such dichotomies, is sufficient for dealing with the full personal and political reality of it.

"Self-injury", masochism and incomprehensible dichotomies

2010-01-09T00:29:00.002Z

I've read 2 posts on the subject of "self-injury" (a term which, like the somewhat broader "self-harm", i really don't like, but which there are frustratingly few or no better equivalents) recently that have frustrated me enough to feel a need to write a response to them: this one at FWD/Forward and this one (or more accurately its comment thread) at let them eat pro-sm feminist safe spaces. This is probably going to be a bit of an incoherent rant due to its very high percentage of "WTF, i just DON'T GET IT", so apologies in advance for probably-even-worse-than-usual sentence structure and overall post structure (the latter probably also due to paragraphs being written out of order and then moved around)...

I'm writing this response here rather than as a comment on either of those blogs because, in the first case, i'm 99% certain that there is no chance whatsoever that anything i write as a response would get past their comment policy (and that may be the subject of another post), and, in the second case, a) while i agree with every word of distractedhousewife's comments (so much so, in fact, that she might as well be speaking for me throughout that thread, in terms of both opinion and experience - i am so glad that there is someone else who hated Secretary for the same reason as me), it didn't feel like there was much i could add to them, and b) it would be reviving a comment thread over a month old, which usually results in being completely ignored when i do it.

The attitudes towards self-whatever expressed in that FWD/Forward post seem incredibly similar to the attitudes of prescriptive feminists (thanks to genderbitch for that phrase/concept, which i think is much more accurate than "radfem" and the like, and which i'm going to use for that phenomenon from now on) towards BDSM and other to-them-"unacceptable" forms of sex in their superficial division between activities based on types of sensation: "nice", "pleasant" distraction activities like having a hot bath, cuddling an animal (or maybe more accurately "mammal": would it be seen the same way if it was a pet spider or snake or something?) are "healthy and productive ways" of "car[ing] for [one]self", but things that are "nasty" or "painful" like cutting, burning, [etc] one's skin are, somehow (how/why isn't made clear) inherently pathological and/or undesirable, just as "nice", "vanilla" forms of sexual activity are seen as "healthy" and "normal" (by at least those prescriptive feminists who aren't opposed to partnered sex as a whole concept, anyway), but "nasty", "painful" or "degrading" ones are seen as pathological or a result of patriarchal brainwashing. And the thing that strikes me is how powerfully and even (to my reading) positively abby_jean speaks about hir own experiences of cutting [etc], yet, inexplicably for me, jumps straight to talking about it as something so self-evidently bad that why it needed to be "got rid of" (by techniques that pretty much all sound at-least-potentially coercive to me) doesn't even need to be said. I'm left wondering why ze needs to write about it in such a "confessional" tone (similar to that used by ex-addicts or religious penitents) about something that, as far as can be read from hir post, used to work for her.

(There's also the whole elision between "self-harm" and suicide in the comment thread of that post, which also frustrates me to no end, since for me at least, there is absolutely no relationship between those 2 things. This frustrates me even more because just about the only pro-cutting [etc] bloggers i've ever come across have also been very outspokenly pro-euthanasia and pro-assisted-suicide, and their pro-cutting writing seemed to be intended as part of a pro-suicide agenda... hence, no links to drop here...)

There also seems to be this assumption in the FWD post/thread that - even though it is at least recognised as a coping mechanism rather than this totally reasonless and destructive thing - inflicting pain on oneself is never ever ever the right coping mechanism, and that in the long run it always needs to be replaced with other, "better" coping mechanisms - which just leaves me wondering, where does that leave people who have tried other coping mechanisms, and found that cutting or pinching or burning or bruising or [whatever] themselves is the one that works best for them? For me, there were times before i discovered the constructive use of physical pain to either distract from or alleviate something else unbearable (whether an emotional situation or a sensory-overloading thing that i had no control over), when if i had known about it, it would have made those situations massively easier for me, and i actually wish that there had been someone to tell me about such techniques - but, instead, i was led by the mainstream culture to believe that "self-harm" was something that only "insane" people did (and therefore totally irrational and inexplicable, with no possibility of actual usefulness), and/or some form of hopelessly disordered, half-baked, pathetic failure at a suicide attempt. But, although it's not directly addressed, the impression i certainly get from the use of "trigger warnings" and such is that encouraging others to do such things would be considered so thoroughly unacceptable i'm not sure if i have the language to describe how it would be seen.

(Aside: am i the only person who feels very unpleasantly patronised by "trigger warnings"?)

The thing that really bothers me about the comment thread on the sm-feminist post is the level of (defensive? disgusted?) anger aimed at distractedhousewife by... almost every other commenter. There seems to be a real desperation to maintain "self-injury" and BDSM/sexual activity more generally as absolutely unrelated categories, with nothing in common at all, and any suggestion that there is anything in common between them is somehow an absolutely-beyond-the-pale thing to say. Now, i'm aware that some of this is due to the context of the original post - prescriptive feminists attempting to pathologise BDSM by associating it with "self-injury" - but much of it seems more personal than that, especially Dw3t-Hthr's and Bean's responses. A lot of people seem to have a very, very heavy emotional investment in keeping these things absolutely separate.

As far as my own experience goes, the stuff i have done to myself certainly isn't anywhere near as "severe" as what a lot of people i know have done: i've cut myself with sharp blades a few times (only once deeply enough to leave a permanent scar; and note that i seem to scar more easily than a lot of people anyway, perhaps due to certain connective-tissue "oddities" - i still have a noticeable scar from a graze caused by falling down steps onto asphalt 3 1/2 years ago, for example), slashed/scratched myself with semi-sharp objects (eg keys) quite a few times, punched myself, banged my head against things once or twice, and got ridiculously drunk specifically so that i would have a really painful hangover the next day once (that one wasn't very successful...). But then, i have several habits that blur the lines between what would definitely be considered "self-injury" and what could just be considered tics, stims or slightly OCD-ish things: compulsively squeezing out the pores on my face and arms (sometimes damaging my skin in the process), or cutting my nails so far back i sometimes damage the "quick" underneath, or scrubbing myself really hard with a pan scourer in the shower (which often leaves scratch marks that last a few days), for example - all of which are things i often consciously do for the sensory and/or hormonal effects of the pain when i am feeling stressed or frustrated, but also sometimes just because i like the feel of them - and i don't see any fundamental difference.

Also, to deal with another apparently-absolute dichotomy, there are several things i have done to myself about which i was, and still am, genuinely not sure if they were "sexual" or not. Is, for example, starting to have sexual fantasies while cutting or scratching oneself - perhaps because the endorphins allow one to feel "good enough" to get aroused, rather than because of any initial sexual intent - in the "solo BDSM" category or the "coping with depression" category? And - possibly to be more honest than i really want to be, but after reading that comment thread i feel the need to say - masturbation itself is, at least as often as not, something that i do not for a pleasurable sensation, but as a nowhere-near-complete-but-still-better-than-anything-else-i-can-think-of attempt to alleviate the overwhelming "badness" [not wanting to use the word "pain" here due to its extreme ambiguity in this context!] of involuntary celibacy and an unwanted, but horribly distracting and frustrating, sex drive.

I feel like there might be a link with what amandaw says in the comments to this other FWD/Forward post about "abuse" of prescription drugs: I still really struggle with some amount of bitterness against the very existence of recreational use of some of these drugs.: it seems like a lot of people have a lot invested in some very rigid and absolute dichotomy between needing to do or have something (or being "compelled" to do it, which frankly i find even less comprehensible, because for me "compulsion" is something that comes from outside a person, whereas what "compulsion" seems to mean to people when they talk about things like drug addiction, "self-harm", behaviours categorised as "OCD", etc is something more like "a felt need that is somehow pathological", and located entirely inside the person) and merely wanting it. For me, that absolute split just isn't there; it's not that i don't recognise any difference (of course a need for something that someone will literally die without and a desire for something that will have little or no material difference to one's life are extremely different), but that for me it's not so much a dichotomy as opposite ends of a continuous spectrum - i simply can't see any set point at which "merely" wanting something somehow crosses over into actually needing that thing, and then becomes something entirely different to be responded to in entirely different ways, and kept conceptually separate as fiercely and defensively as possible. Just where is this dividing line?

(Edit: i've just realised that the previous paragraph is pretty relevant to a lot of other stuff as well, notably the "gatekeeping" debate with regard to SRS/gender transition, and some of the nasty identity stuff around "appropriation" (a concept i'm going to have to do a post on the problematic uses of...) that seems to happen there. Some stuff about use of assistive technologies by people with different impairments too... and probably other things...)

Maybe there is some "neurotypical" way of "self-injuring" which is completely and utterly different from anything i have experienced, and that i (and, seemingly, others like me) really don't understand. Maybe some people do feel "compulsions" as something fundamentally, qualitatively rather than just quantitatively, different from simply wanting something really intensely and overwhelmingly; if that's the case, then i have absolutely no idea what that would feel like. But, if this is the case, then i haven't read any comprehensible description of it, and nor have i ever encountered someone willing to explain exactly what this distinction is, or why they are fundamentally separate, non-contiguous categories.

Maybe, in fact, this is a bit like the gender identity thing - something that seems self-evident to the majority of people, but that i can't grasp simply because it isn't there in me? I don't know; i'd genuinely like to know what it is that i'm not (and, from the thread at sm-feminist, at least one other autistic person, who's a much better and clearer writer than i am, also isn't) getting here, but i'm kind of afraid to ask because of how "unthinkable" even the question seems to be for so many people. Is the way that "self-injury" seems to have some sort of taboo status as something that must never, ever be encouraged, "normalised" or treated as a positive coping technique for anything... something purely cultural, which (like so many other generally-unquestioned norms of "mainstream" Western culture) my lack of "proper" acculturation allows me to "see through"? (although phrasing it like that feels a little uncomfortably like asserting some sort of autistic superiority over the "dumb sheeple"...), or is it actually something inherent to the non-autistic psyche (which would, presumably, make autistic and non-autistic people's "self-injury" into fundamentally different phenomena - something i'm not exactly comfortable with either, as it seems very like essentialising a difference between autistic and non-autistic people to an extent that makes attempts at mutual understanding almost futile)?

I'm not being controversial for the sake of it here, but writing out of honest frustration that i am somewhat worried might be interpreted as such. I have a feeling this might go even deeper, and into theory-of-mind-related gaps in my understanding of the "self", which i've attempted to write about before but never got anything even remotely coherent enough to make into a blog post, and which i'm certainly too tired now to even start trying to explain tonight, so i'll stop here. Apologies for the ridiculously high number of asides and contorted parenthetical sentences. Any coherent and non-flamey responses, however, much appreciated.

ASAN Action Alert: Free Zakhqurey Price!

2010-01-06T14:19:00.004Z

Edit (01/08): there is now a transcript of an interview with Zakhqurey's grandmother here thanks to Tera, and two heavily recommended posts by Urocyon here and here.

I've been forwarded this from several different sources, so am reposting it here. It's worth noting that, even though this particular situation is going on in the US, the same sort of thing happens in the UK, other European countries, and elsewhere...

Hello,

In the past, we've written to you about advocacy issues relating to the rights of adults and youth on the autism spectrum. Our voices have made a difference on all manner of policy concerns and have sent a clear message that those who seek to deprive Autistic people of any age of their rights will have our community to answer to.

Now we'd like to ask you to help us take action to help protect an 11-year old Autistic boy in Arkansas named Zakhqurey Price, currently being charged with felony assault after fighting back when two staff members restrained him in response to behavioral challenges. The school has ignored repeated efforts from Zakh's grandmother over the course of the last five months to obtain needed IEP supports to improve his educational options and manage his behavioral difficulties.

According to the suspension notice, the restraint was in response to Zakh destroying school property - something beyond the scope of what would be allowed under recently introduced federal civil rights legislation around restraint and seclusion in schools.

Disability advocates, including ASAN, are fighting to pass this crucial legislation that would broaden the protections available to students like Zakh as well as those with other disabilities and with no disability at all. We have asked for your help in passing this important legislation, and together we can succeed in bringing proposed civil rights protections into law - but not in time to help Zakh. That is why we need you to take action now.

Find out how below:

School Principal:
Pam Siebenmorgan (One of the charging parties in Zakh's felony hearing - polite but firm calls and e-mails encouraging her to drop the charges would be helpful)
Phone: 479-646-0834 *
E-mail: psiebenm@fortsmithschools.org

School Superintendent:
Dr. Benny Gooden (The Superintendent runs the entire school district - polite but firm calls and e-mails communicating how this situation is damaging Fort Smith Public Schools' reputation would be helpful as well)
E-mail: bgooden@fortsmithschools.org

School Board Office: 1-479-785-2501 Ext. 1201 *

We recommend that you both e-mail and call if you can. If necessary, e-mail is the preferable option. If you would like your e-mails to be passed along to Zakh's grandmother, please bcc: info@autisticadvocacy.org. Please stress the importance of Fort Smith Public Schools taking the following steps:

-Drop the charges against Zakhqurey Price

-Work with his grandmother to put in place an IEP that will fulfill Zakh's right for a Free and Appropriate Public Education in the Least Restrictive Environment

-Improve training for school personnel to prevent future such incidents and to ensure that students on the autism spectrum as well as with other disabilities are included, supported and educated in Fort Smith Public Schools.

If Zakh is declared incompetent as part of the hearing scheduled for January 12th, state law requires that he be placed into a mental hospital for at least 30 days. Carole's grandmother fears that, due to the negative repercussions of being taken out of the community and being forced into an institutional setting, Zakh may lose skills in such an environment and not be returned to her indefinitely.

That is why we need you to act now. Please distribute and repost this action alert. Thank you for your time and your advocacy, and as always, Nothing About Us, Without Us!

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
info@autisticadvocacy.org
(202) 596-1056 *

Please pass this on to any other networks (blogs, forums, email lists, things like Twitter, etc).

* I assume these are US phone numbers. I don't really know how US phone numbers work and if it's possible to call them from outside the US, or what international call prefixes you would need to add, how much it would cost (probably a lot), etc. If you're in the UK/Europe, IMO it would probably be better to email rather than phone.

Blog functionality update

2009-12-31T00:05:00.003Z

In response to the spam commenting issues i've been having, and thanks to Lindsay for telling me that the relevant settings exist, i have now changed my comment settings to moderate all comments on posts over the (fairly arbitrary) limit of 50 days old (as it only seems to be posts over approximately that age which recieve spam comments).

I'm also working on writing a better comments policy than the minimal one i've got up at the moment (although it certainly won't be anywhere near as restrictive as those that many, especially feminist, blogs seem to have, as i have major ethical problems with the level of (what i can't think of any better word for than) censorship of comments exercised on many blogs [and not the simplistic "free speech" ones either; i'm going to write about this when i can verbalise more coherently about it] - it's more an exercise for myself in working out what exactly falls into the category of "spam" and what doesn't, after i recieved some short and to-me-incomprehensible-and-irrelevant-but-possibly-not-actually-spam comments on a recent post, which i deleted, but then felt a bit unsure if i was right to do so when they didn't strictly fit into my existing deletion criteria. (If the anonymous person who posted them is reading this, isn't a spammer, and is able to explain in greater detail what ze was trying to say, i apologise, and i welcome hir to respond here.)).

There are also two pieces of functionality that i'd like, if possible, to put on this blog, but which i've only seen on non-Blogspot blogs so far: the first is the sidebar widget which lists and links to the N most recent comments (as opposed to most recent posts), as seen on blogs hosted at ScienceBlogs (e.g. Tetrapod Zoology or Respectful Ignorance, on both of which it can be seen on the left sidebar just below the "recent posts" widget. I think i've also seen WordPress blogs use that feature; IIRC, Ballastexistenz had it before the most recent theme change. [EDIT: Questioning Transphobia also has it.]) The second is a rather nice feature which FWD/Forward has, where commenters can choose to include a link to their most recent blog post at the bottom of their comments; i think this is a really good way of enabling networking and outreach between blogs, considerably better than the Blogger profile system. I suspect neither of these is possible to put in a Blogspot blog, but i am going to investigate to see if it can be done; if anyone reading this knows a way it can be done, i'd appreciate telling me. (Yes, i know i'll get replies saying "switch to Wordpress", but there are also good reasons why i'm keeping this blog, at least for now, on Blogspot: i like the way tags work on this platform, and really don't like the way they seem to work on Wordpress, for example.)

At some point, i'm going to start work on the header image i've got planned, too (thanks to Urocyon for letting me know how to do that), but that may not be particularly soon.

Anyway. Off to respond to comments on my last post now (apologies for not responding sooner, it was due to being away for Christmas and having only intermittent internet access making thinking about responses somewhat difficult. One of my new year's resolutions this year is to try to reply to blog comments more promptly...). May do a "proper" post tonight or tomorrow if i have the energy...

Gender Identity, Revisited

2009-12-23T02:09:00.001Z

I've been meaning for quite a while to revisit this post (which, i note, i wrote nearly exactly 2 years ago now) - since, in fact, Luke aka AnarchoAspie included it (along with this one) in his zine, for which i inexplicably can't find a link (which i would have sort of liked to have been given the opportunity to do a slight edit due to things like hyperlinks not showing up in a printed format, but never mind) - because i had a creeping feeling that i would no longer agree with parts of it. The desire to revisit it was increased when Urocyon posted her own response to it, here, and even more so when Amanda Baggs then referred to that in her post on intersectionality (which i need to write a further response to the class part of). (I'd like to note here that both Urocyon and Amanda are much better at writing clearly and concisely than i am...)

On re-reading, there's actually not that much that i feel differently about now. One thing that stands out is a terminology issue - throughout, i was using the phrase "trans people" to exclusively mean transsexual people, whereas i'd now go with a much wider definition of the term "trans", to tentatively even include the likes of myself (although it still feels a little potentially-appropriative, as someone who neither desires to physically transition nor transgresses gender in any visually-obvious-to-a-passing-stranger way (well, unless long hair counts, but i really don't feel like, at least combined with a beard, it does)... but i've been told by visibly-trans, transitioning-transsexual friends that i "should" use it, so...) There's also the uncritical use of the term "primary" to describe the subset of transsexuals who are aware of their transsexuality from early childhood, which i probably wouldn't use now because of the possible unpleasant connotations of a hierarchy of who is "truly" transsexual and who isn't (although, it has to be said, i'm not aware of any less-loaded terms to distinguish between those who know they are transsexual from an early age and those who come to realise it later in life - if such terms are needed at all, which they might not be).

I've also since then become more aware of the range of terms used to describe gender identity or lack thereof: while Amanda uses "nongendered", which works for me, i've also encountered "agender" and "neutroi" (although the latter seems to be used primarily by/for agendered people who wish to physically transition to a "gender-neutral" or "undifferentiated" form: i'm also not sure if it's singular "neutro" and plural "neutroi" (which sounds vaguely Greek), or singular "neutroi" and plural "neutrois", or singular and plural "neutrois" (which sounds vaguely French), nor how to pronounce it, so i wouldn't use that one for me). I've even discovered a forum which includes specific discussion areas for agendered/nongendered/neutroi(s) people, although i haven't got round to registering or posting there yet... so i'm no longer feeling quite as much like i did when i wrote another piece which somehow never made it into a proper blog post:

*I don't want to "do gender" at all. I feel like i don't have a gender, and more than that, don't want a gender. I want to live in a world where the concept of gender was never even thought of.

And that's never bothered me on an internal level - but then i see all these conversations about gender and genderqueerness all over the web, and they're all awesome, but the implication of them seems to be that everyone is supposed to have a gender identity and a gender presentation, even that it's impossible not to - and i just want to scream "BUT I DON'T! Am i a complete unperson?"

But then, maybe i'm deluding myself - maybe it is true that everyone has a gender presentation, whether they think they do or not... but in that case, what is mine? I say that i choose clothes purely for comfort and practicality - but then, is that *entirely* true? Aesthetics does play some role, because there's a range of colours that i buy clothes in - black and earth tones (brown, beige, khaki, dull greens), occasionally red or yellow, but almost never white, and absolutely never blue - that has to be aesthetically motivated, or else i'd buy clothes absolutely without regard to colour, right? But does gender have anything to do with that? Is my dislike of blue because of its association with masculinity, because of its association (in the UK) with political conservatism, or just because i think it's a visually ugly clash with the colour of my hair and skin?

I look unambiguously male because of my facial hair, but the only reason i have it is because i don't like the sensation of, and can't be bothered to spend time on, shaving. Likewise my hair is long mainly because i don't want to pay for a haircut. I have never worn any form of make-up, nor wanted to. This kind of not-caring seems to be culturally gendered "masculine", but i find it hard to see how not caring about appearance can be gendered any way at all, rather than being at a neutral, equidistant point on the scale (if a scale even exists). It strikes me, in fact, that not-caring-about-presentation equalling "masculine" is a sign of institutionalised misogyny - the male/masculine is seen as the "norm", and the female/feminine as the "deviant" "other", to the extent that whether you are male or female, not doing anything about one's appearance or presentation gets one gendered as "masculine".*

I do still often feel that fundamental level of confusion, though, due to the fact that i don't (and probably never will, based on the principle that personal experience is the only true and full understanding, or "who feels it knows it") really know what "gender identity" is - as Amanda says:

Gender is a concept that, while I understand intellectually that it is greatly important for other people, is entirely absent and incomprehensible to me. I imagine that it must be some collection of aspects of a person’s identity that all cluster together in most people’s minds, whereas I’ve spent my life oblivious to how they are connected or why I would want to connect them, and innocently trampling all over people’s ideas of what it means to be masculine, feminine, or even any particular point in the middle.

While i can completely get my head round (even tho i've never experienced it) the idea of feeling dysphoria about one's physical sex, on the level either of "body-map" issues or of needing a certain balance of sex hormones to function "right" physically and/or mentally, and i am aware of (and can perceive at least some of, even if i thoroughly disagree with, the cultural reasoning behind) the personality qualities regarded culturally as "masculine" and "feminine", it's the bit somewhere in between that i feel like i'm missing - the idea of being "a man" or "a woman", rather than being (or wanting to be) physically male or female, or choosing to present oneself as masculine, feminine, butch, femme, androgynous, or whatever. I'm not sure if this is completely a function of being agendered myself, or if some people might lack a gender identity themselves, yet understand in a more solid way what it is for others to have one - in which case, i'd need an additional term to agendered/nongendered, perhaps something like "gender-blind" (analogous to faceblindness, perhaps? although i'm not, or at least not strongly, prosopagnosic)? Gender-impaired? I don't know; i do know that i'm way over my head when reading, for example, discussions like the one between Trin and Elizabeth here, and, likewise, find it incredibly hard to get my head round the "conceptual sexual orientations" discussed here (since i don't know how "to gender" anyone...)

Anyway, yes, i'm back to posting now, and aiming to post a bit more regularly, but as i'm off for 5 days tomorrow to do the Family Christmas thing (which, as there's... interesting... family stuff going on at the moment, might be rather more preoccupying than usual), it might be a week or so til the next one. Hope everyone is surviving the weather, not having to deal with too much non-accepting-of-identities crap from their families, and enjoying whatever (if anything) you choose to celebrate at this time of year...

Comments and spam

2009-12-20T15:40:00.002Z

I've closed comments on a few old posts on this blog because, for some reason i can't work out, they've been attracting *huge* amounts of spam (like several spam comments a day). The majority of them are probably ones that no one is likely to want to post a "genuine" comment on anyway (they're either reposts of now-long-gone calls for papers, or my embarrassing ramblings about my emotions at the time), but there are a couple which people might concievably want to comment on if they newly discover them, so, for now, if you find a post you want to comment on, but comments appear to be closed, email me and i'll turn commenting back on for that post.

(I can't think of any other viable way to do it, to be honest: using word verification to prevent spam is inaccessible for people with a lot of impairments, and i don't really want to require moderation for all comments, because it puts me in a position of having to approve every single comment, which i might not be able to do immediately, and as i would like commenters to be able to debate and respond to each other, i'd like comments to appear straight away when people post them. Also, if i disagree with something someone says, i want to debate them publicly, not just delete it (blatant trolls being the only exception, but i haven't really had many of them, with the possible exception of the anonymous person who just repeatedly posted "please tell me where can i buy a unicorn?" as a response to several posts... i can't quite work out if that was an ineffective troll or an even more ineffective spammer...) and moderating comments feels uncomfortably like censorship, which i feel angry enough about at other blogs to feel it would be totally inappropriate to do on mine.)

I have no idea why those particular posts have been attracting spam. There aren't any obvious words in the titles that spammers might be looking for (and some others that do have words, like "sex", that you would expect spammers to look for in their titles haven't attracted anywhere near so much spam), nor do they have many backlinks. (A couple of the "call for papers" ones have email addresses in them, which could be why, but other posts that have been getting it don't.) Any suggestions, please let me know...

Regeneration: phase 1

2009-12-06T02:40:00.002Z

As you may have noticed, i've changed the layout of this blog (some may have seen several changes). This is essentially phase 1 of the regeneration i was talking about.

I've been wanting a 3-column blog layout (with all the stuff about me, such as my profile, tags and blog archives, in one sidebar and all my links to other blogs and websites in the other) for a long time, so i am very, very pleased that Anne (of Existence is Wonderful) sent me the HTML for this one. :) (If you read her blog as well as mine - and if you don't, you should - you will probably already have noticed the resemblance.) I'm possibly going to tweak a few things so that it doesn't look like too much of a blatant clone of Anne's blog, as i think that's a little unfair on her - maybe some slight changes to some of the colours, and/or the little "arrow/bullet point" images (if and when i can work out how to do that), but i'm very happy with the basics of this layout - which means i'm happy enough with the appearance of this blog to start properly writing posts again.

(That's not necessarily to say that i will start posting regularly very soon, as aspects of my life are still in a significant state of upheaval - i'm potentially moving to another city either before or very soon after Xmas, which might leave me without internet access for a (hopefully short) period of time, and there is family stuff going on which is probably going to make Xmas itself... interesting. But my intent for January 2010, if not sooner, is to try to write more (and probably, much of the time, shorter) posts, and to cover at least some of the topics i've been meaning to, but not getting round to, blogging about for a long time - in some cases, since i started this blog, which is, unbelievably, almost 2 and a half years ago. What the hell happened to all that time?)

There's still more stuff i want to do - the link lists aren't quite finished yet (and here would be a good time to say - if you're reading this, and have a blog that i don't (yet) link to, but that you would like me to link to, and that fits into my general link categories, tell me about it! Or, for that matter, if you have a blog or website to recommend that isn't yours...), and at some point, i'd like to put together a custom header image, made up of a collage of a number of existing images (most of which i already have). For that, i need to learn how to use some image-manipulation software to do that, tho (i have GIMP, and am sure that that can be done with it, but for some reason how to do it doesn't seem to be in any of the easily findable online tutorials, so if you know how to do it and can explain it easily, then i'd like to hear from you...)

Also, i'd like feedback on the accessibility of this blog layout - does it work OK with screenreaders? How are the fonts and colours for people with things like Irlen's, colourblindness, or dyslexia? Are there any other accessibility issues that i have no idea about?

Anyway. Lots of posts planned. Hopefully will post some of them soon. I'll probably next do a link post to advertise some of the new-to-me blogs that i've discovered and been reading while i've not been actively blogging.

AutreachIT seeks digitally skilled autistic people

2009-11-21T21:55:00.005Z

Coming briefly out of blogging hiatus to post this callout from Dinah Murray of AutreachIT:

AutreachIT exists for the purpose of employing digitally skilled autistic people to bring ICT to digitally excluded autistic people.

To be included, empowered, and able to take a real part in decisions about their own lives, autistic people need effective ways to communicate.

Legislation supports the right of access to Information and Communication Technology (ICT)[1]. We want to make that access a reality.

AutreachIT aims to

· promote access to ICT

· raise awareness of rights to ICT,

· demonstrate the effectiveness of ICT,

· employ digitally skilled autistic people to develop ICT for hitherto digitally excluded autistic people.

AutreachIT is a not for profit group founded in 2008 for the purpose of using autistic skills and knowledge to end the digital exclusion of autistic and other adults receiving funded care. We plan to provide a bank of specialists in varied aspects of ICT and digital inclusion. We have an autistic core team, but do not exclude any willing participant. Email us at autreachitaccessproject@googlemail.com to learn more.

See below for some specific possibilities that are already on the horizon.

Our first major project is a research project. The basic idea is to use autistic ICT knowhow to take ICT to adults with autism who cannot meet their needs through speech and are in supported living without digital access, and to find out what if any is the impact of doing so. The plan is to distribute personalised iPhones with voice output software installed to twenty service users and paired key staff in an autism specialist service, and assess the impact of doing so on communication, inclusion, and “challenging behaviours”.

We think addressing the basic communication needs of autistic adults may have a profound impact on their levels of participation, inclusion and quality of life. We want to find out if this is true. Targeting the study at people with pervasive unmet communication needs whilst at the same time attempting to meet those needs is intended to fill a yawning research gap. Our research is aimed at getting proof of concept that major benefits may accrue if appropriate investment in ICT is made.

If it goes ahead, the research will need a full time or minimum 30 hour week, paid ICT and iPhone specialist for a year, hopefully starting mid way through next year. This, or any other AutreachIT employment opportunities that arise could possibly be done on a job share basis. More ICT work will be needed in subsequent years, but probably for fewer hours. A funding application is currently being formulated. The ICT specialist[s] would be

1. capable of developing apps for iPhones, including data capture software to:

a. automatically record usage (eg app launches and exits)

b. collect feedback data from user via user friendly forms, which may be customized to maximize accessibility (eg use symbols if needed)

2. capable of developing an associated web-based database system, with automatic upload of data from iPhones

3. capable of taking responsibility for storing and analyzing data securely and preserving confidentiality as required

4. capable of working constructively with iPhone users, autistic and otherwise, digitally or face to face

5. preferably capable of doing hands-on training in iPhone use and in autism friendly communication and expression, in the London area (twenty half days over two years)

6. capable of working with other members of the AutreachIT team to develop software as needed, to analyse and improve training, and to contribute to other AutreachIT ideas and projects.

We will also need some part-time autistic trainers (see 5 above) since we will use four trainers at each session.

If you think you have or could develop the right skills set either to be an ICT specialist for this, or to be a trainer, or to contribute to future projects, using different platforms, or If you want to know more about the planned research, please let us know on autreachitaccessproject@googlemail.com

[1] Morris 2008 www.dius.gov.uk/~/media/publications/I/ict_user_skills

Having friends who have been in institutions and who have been denied any effective means of communication (while being extremely fluent and powerful communicators if they have access to the right technology), i think this is incredibly important and one of the most radically practical and useful initiatives existing in the autistic rights movement. I have no "techie" skills whatsoever, but i know there are a lot of anti-oppression bloggers (autistic or otherwise) out there who do, and who could contribute to this project - so please spread this to anyone who you think might be able to help...

Overhaul of this blog (or at least the first phase of it) should come within the next couple of weeks. Hopefully something closer to knowing where my life is going will too...

Regeneration

2009-09-26T16:44:00.002+01:00

I know i haven't blogged in quite some time. There have been some major upheavals in my life, and are probably going to continue to be for at least the next several weeks, if not months. Therefore, although i have things i want to write about, i am unlikely to feel up to any coherent sort of blogging for a while. (I probably ought to have said this a while ago, but... well, i'm really not doing well in terms of executive function at the moment.)

However, i've also been dissatisfied with this blog (in terms of the look, layout, etc) for quite some time, so i think i am going to try to take the opportunity of this blogging hiatus to reinvent it. Quite what this reinvention will involve, at this stage i'm not quite sure; it might be as simple as finding a different Blogger template, or it might involve moving to a different platform (such as Wordpress) and maybe even changing my username and/or the title of the blog. (Don't worry if you have been following the current incarnation, if i abandon biodiverseresistance.blogspot.com i will post here to redirect people to the new name/URL.)

I also haven't decided how much to conserve of the content; there are things i have written here that i am proud of, but possibly more that makes me cringe on re-reading it. I might go through and have a cull of the more trivial or less successful posts. (Then again, i might not.)

I have always wished that, like Time Lords in the "Doctor Who" universe, i could regenerate, creating a new incarnation of myself to take over when the life of the existing "me" has fallen apart. Well, if i can't do it in real life, at least i sort of can in my online existence. See you on the other side.

Direct Action for Independent Living, Birmingham, 14th September 2009

2009-08-31T23:24:00.001+01:00

PLEASE FORWARD AS WIDELY AS POSSIBLE:

The Disabled People's Direct Action Network (DAN) is once again taking action against Birmingham City Council (BCC) on Monday 14th September for the rights of disabled people in Birmingham and everywhere to life, liberty and the choice and control over our own lives that most non-disabled people take for granted, but which we can be denied at the whim of a local authority.

BCC promised to work with DAN towards establishing genuine independent living for disabled people in Birmingham after our last action in March (see report at http://www.indymedia.org.uk/en/2009/04/425854.html) won us a meeting with Peter Hay (Director of Health and Social Care) and other Council officials, but has not delivered on that promise, and 6 months later there has been no apparent change in BCC's treatment of disabled people.

Yesterday (30th August 2009), a disabled service user and DAN supporter, for whom members of Birmingham DAN had been advocating in the "social care" system, died in hospital in Birmingham following BCC's refusal, only a few weeks before, to provide him with any care or support to live independently.

Disabled people in Birmingham are still being refused assessments for direct payments to employ Personal Assistants (which is breaking the legal obligation of all Local Authorities under the 1990 Community Care Act), being told by social workers that they do not have any needs or being bullied by council officials into signing agreements they do not want to sign, simply to save the council money.

Other disabled people are still homeless, living in totally inaccessible housing, trapped against their will in nursing homes where they have no choice and control over their own lives, or living in total social isolation and disgustingly filthy conditions, not because of a lack of funding for accessible housing and social support services, but because of the absence of the political will to use council funding for those purposes.

How many more disabled people will have to die and how many more lives will be put at risk before BCC gives us our human rights?

The action on September 14th will start at 1pm and will be in Birmingham city centre. For further information contact Steve on 07931 421947 or soulrebel@riseup.net or Tom on 07816 275985 or tomcomdan@hotmail.co.uk.

Please forward this message to as many disabled people (or anyone else who you think may be interested in taking part in the action) as possible.

FREE OUR PEOPLE!

Holidays... revisited (sort of)

2009-08-26T22:49:00.003+01:00

So, a couple of weeks ago i went on the first holiday that was "just" a holiday (as opposed to things like protest camps, conferences* or arts festivals) of my adult life - a week in a cottage in the Lake District with 3 friends - which got me revisiting this post, written approximately 2 years ago**...

* I'm probably going to post about Autscape 2009 - which i went to immediately after this holiday - next.

** Yes, i've been blogging for over 2 years (and completely missed both the first and second anniversaries of my blog)... and there are still things that i've been intending to write about on this blog for the whole of that time that i haven't got round to writing about. Also, it seems like my writing style has got a lot less accessible over those 2 years, which is a bit depressing.

Most of what i wrote then, i still agree with - particularly the bits about the school and university term/holiday system, which, i think, was meant to be the more major point - but re-reading the first part is interesting in the light of having actually been on what was, on the face of it, a very "typical British holiday" of the sort i was basically saying i had no interest in doing, and enjoyed it.

The big thing is, of course, that going on holiday as an adult with a group of friends is incredibly different from going on holiday as a child in a nuclear family - and, re-reading that old post, i'm struck by the apparent fact that, even 2 years ago, i had far more cultural baggage about couples and nuclear families as the "only acceptable" social units, which i've somehow managed to shed, if not totally then to a fairly large degree, in the intervening time. (This is possibly, in part, due to having read and thought quite a lot about polyamory - which one of my next few posts will hopefully be about - and other ways of achieving "family" that don't fit the nuclear-family model.) (However, in those 2 years, i still haven't got any closer to resolving my involuntary celibacy situation, which is a bit depressing, but a topic derail too far for this post.)

Sharing living space with 3 other people, even 3 people who i know well and with whom i've been friends for several years, was somewhat stressful (especially as i hadn't fully realised just how used to living alone i'd got after over a year of having my own flat - going back, even temporarily, into a "shared house" situation was somewhat jarring) - but one thing that really helped was knowing that the people i was with knew me well enough to understand that my difficulties in social processing were not deliberate attempts to be unfriendly or make things harder for others (very much unlike my parents on my childhood holidays!), and that the times i got upset (which were only minor, really) were about me, not them. Overall, while i had been hoping that there would perhaps have been some deeper conversations that would have consolidated the friendships in a more concrete way***, it was an enjoyable experience, and one that i'm alread thinking about planning to repeat, and maybe even establish as an annual "tradition", and 2 years ago i wouldn't have ever seen that as a possibility.

*** which reminds me of things about friendship and "family" relationships that i need to write about, but am not quite "together" enough in terms of finding the right kind of language to write about right now...

What was a bit frustrating was that i only really got to spend a day and a half doing what i really wanted to spend most of the holiday doing - hiking in the Lake District fells (for non-British readers, "fells" is a term for areas of high ground which straddles the boundary between "hills" and "mountains", which i don't think is used much outside of Britain, or possibly even outside of Northern England), which was largely because of the friends i was with being not quite as "into it" as i was, which means that i might have to find a slightly different combination of people to do it with next year. (This somewhat brings me back to the ethical issues i wrote about here, and still haven't got fully resolved in my head... but then, i am famous as the person who Has To Ethically Analyse Everything, even when it might not be all that useful to...)

Anyway, the bits of the landscape i did get to see were incredibly beautiful, so i felt like i should include a few of my photos here... but really couldn't pick few enough to reasonably put in a short blog post, so instead i'm just going to include a link to my gallery of the holiday at Atpic (a relatively little-known site which, however, i recommend to anyone who wants to put photo galleries online because, unlike better-known (and admittedly also shinier-looking) sites like Flickr, it lets you upload as many photos as you like without a limit on how many are viewable, and is free)...

Again, i suck at conclusions. Might have some more worthwhile things to say about the experience, but can't think of them right now. Hopefully, tho, i am going to be posting a bit more regularly (tho no promises!) over the next few weeks or so...

Freaks, Hercules and the Hydra

2009-08-08T01:47:00.004+01:00

Tod Browning's 1932 film "Freaks" is often regarded as one of the most significant films about disability in history - however, it has much wider significance as well. It was among the first films to use genuine disabled actors playing disabled roles, and is arguably unique - not only for its time, but perhaps even now among cinema-released films - in its portrayal of disability community and identity. Its plot centres around a travelling circus and its community of sideshow freaks, most of whom (with a few exceptions) are disabled people, and an attempt by a non-disabled woman to con one of them out of a fortune he has inherited.

Much has been written about the ambiguous nature of disabled people's exploitation and/or free-willed participation in circuses in the 19th and early 20th centuries, and there are intersections with race and colonialism, among other things (some of which i touched on in this old post), and the film "Freaks" reflects that ambiguity, both from "within-story" and "external" perspectives - most of its cast were "real" circus performers, some of whom had already had long and celebrated careers before starring in it, and many scenes show the "freaks" performing parts of their acts, both in-context in the story and, more problematically, in other scenes that could be regarded as gratuitous (for example, the "Armless Wonder" drinking wine with her feet, or the completely limbless Prince Randian lighting a cigarette using only his tongue). Opinion has been divided over whether the film itself was an act of exploitation of its disabled performers - who were, as reported here, viciously excluded and discriminated against at the MGM studios - as well as whether its climatic scene represents a reversion to negative tropes of disabled people as monstrous and villainous, or a subversion of that trope (however IMO there is considerably more going on there - see below).

The main protagonist of "Freaks" is the "midget" performer Hans, who is in a relationship with his similarly-sized fellow performer Frieda, but is seduced by the "normal" trapeze artist Cleopatra, who claims to be in love with him, but in fact is trying to obtain the family fortune which Hans has inherited. Aiding her in her scheme is the strongman Hercules, her real lover, who cruelly mocks Hans's affection for Cleopatra behind his back. Hans, who is desperate for acceptance by the "normal" community, does not realise that he is being mocked and tricked until it is almost too late, despite the warnings of Frieda and the rest of his fellow "freaks". Dismissing Frieda as jealous, he marries Cleopatra, but her true attitude to him is revealed in one of the most memorable and frequently-referenced scenes in the film, the wedding ceremony in which the "freak" community declares Cleopatra to have become "one of us", resulting in her disgusted outburst of "Dirty, slimy freaks!" (The freaks' ritual chant of "gooble gobble, gooble gobble, we accept you, we accept you, gooble gobble, gooble gobble, one of us, one of us" was used (albeit misheard as "gabba gabba") by The Ramones in their song "Pinhead", indirectly becoming a punk catchphrase.)

(The original poster for the film, with its slogan "Can a fully grown woman truly love a midget?", totally misrepresents the plot, making it look as if it is a more conventional "love triangle" with Cleopatra in love with Hans and Hercules jealous of them.)

In contrast to the manipulative Cleopatra, the character of Venus, played by Leila Hyams (who, significantly, is shown at the start of the film being dumped or rejected by Hercules), treats the "freaks" as equals, as shown most symbolically by the scene between her and Frieda while hanging out washing, in which they interact as two women bonded by gender rather than separated by physical size or (dis)ability. While her character is obviously primarily there to give the viewers a non-disabled female "star" (and perhaps sex object) who is a sympathetic character, and much could be written on her being an example of how disabled people's struggles are often only considered "legitimate" if they have non-disabled supporters (something paralleled in nearly all marginalised groups), she also forms a sort of "human bridge" between the disabled and non-disabled performers, affirming their common humanity (and in doing so contrasting not just with the cruel and exploitative Cleopatra, but also with the unnamed "nurse" who "looks after" the more impaired freaks, and dehumanisingly patronises them by regarding and treating them as "children").

(Notably, Venus's partner Phroso, a clown with a stutter, is in an ambiguous position and a person with an impairment who is, nonetheless, one of the "non-disabled" performers in that his act does not centre around his impairment (and indeed his audience would probably have been unaware of it), and is one of the more sympathetic characters in the film, who could be seen as a disabled person "on the inside" of the community of the non-disabled performers who, for the most part, consider themselves superior to the "freaks".)

In researching this post i found out, mostly via Wikipedia, loads of interesting facts about both Browning and the cast of Freaks that i don't think are particularly widely known, including some that are fairly trivial (such as that the actors playing Hans and Frieda, Kurt and Frieda Schneider (aka Harry and Gracie Earles), were in reality brother and sister, and members of a circus family who performed together until the 1950s, that "Schlitzie", the microcephalic "woman", was in fact male, but played female characters for most of his sideshow career, or that Angelo Rossitto, who played a fairly minor but noticeable role in "Freaks", lived until 1991 and had a long film career, the last major role of which was in "Mad Max: Beyond Thunderdome"), but some rather more significant to analysing "Freaks" in a wider context.

One such is that, before "Freaks", Browning directed at least 2 other films with disability or physical "freakishness" as a central theme (not counting fantasy-horror material, such as his several vampire films including the classic 1931 version of "Dracula"): "The Unknown", which was about a non-disabled circus performer who faked an impairment for his act (played by Lon Chaney - who, interestingly, was a hearing child of deaf parents, and played many other disabled characters - although some of the stunts were done by the genuine disabled knife-thrower who inspired the story), and The Unholy Three (his first film with Harry Earles, who played a criminal who posed as a non-disabled child to commit his crimes - interestingly paralleled by the recent film Orphan, as reviewed by Tera here). (I haven't seen either of those films, although i'd like to - neither of them appears to be available on DVD...)

Most interestingly of all is the fact that Browning himself was arguably a disabled person - according to Wikipedia, "In June 1915, he crashed his car at full speed into a moving train. His passengers were film actors Elmer Booth and George Siegmann. Booth was killed instantly, while Seigmann and Browning suffered serious injuries, including in Browning's case a shattered right leg and the loss of his front teeth. During his convalescence, Browning wrote scripts, and did not return to active film work until 1917." Before becoming a film director, Browning also himself worked in a circus, including as a clown, and it's tempting to suggest that he based the character of Phroso the clown on himself in his circus days.

The thing that really strikes me as worth writing about, however, is the significance of the name and character of "Hercules", and what he represents. "Hercules", of course, was a common and unremarkable name for circus strongmen, being the more familiar Latinised form of the name of the most famous of Classical Greek mythical heroes, Herakles, a demigod who was famed for his superhuman strength. The symbolism of the original myth of Herakles/Hercules, however, adds many layers of meaning to the plot of "Freaks", and particularly to its climax...

Herakles - like many other Classical Greek male heroes, though perhaps foremost among them - fought against and conquered many monsters and unnaturally powerful animals, representing the chaotic, "untamed" forces of nature - generally seen in Western culture as feminine - while the heroes represented humanity (or "Man", seen as male) conquering or taming nature to establish classical civilisation. The majority of the "Twelve Labours of Hercules" involved the killing or capturing of such chthonic ("of the earth") beasts, the most famous of which was the Lernaean Hydra, a many-headed serpent which regrew two heads for every one that was cut off. (The other labours followed a similar general theme of conquering or taming nature, including re-routing a river to clean out a giant stable, stealing the girdle of the queen of the Amazons (very significantly representing patriarchal civilisation taking the authority from a putative earlier matriarchy, or more generally "Man" imposing his authority over "Woman"), and stealing immortality-giving apples from a garden guarded by nymphs (perhaps representing human mastery of farming?). It's also worth noting that there is a real animal called the Hydra, named after the mythical monster.)

The symbolism of Herakles' defeat of the Hydra was heavily used in early modern statistic and capitalist propaganda advocating the repression of diverse minority groups and anti-establishment movements and the need for a strong, masculinely "heroic" ruler to enforce such repression as part of the development of capitalist and patriarchal imperialism which was seen as a revival or continuation of classical civilisation and its project of triumph and control over chaotic nature (and those "uncivilised" groups of humans regarded as being on the side of chaotic nature). This, and in particular one famous pamphlet from 1622 called "An Advertisement Touching a Holy War" by Francis Bacon, the aristocrat regarded as one of the founders of modern empirical science, was the inspiration for the title of Peter Linebaugh and Marcus Rediker's radical history book "The Many-Headed Hydra: The Hidden History of the Revolutionary Atlantic".

In his "scientific" writings, Bacon divided Nature into 3 major divisions: "nature in course", "nature wrought" and "nature erring", consisting respectively of the "normal", the "artificial" and the "monstrous" (it's perhaps worth mentioning here that the original subtitle for the edited version of "Freaks" was "Nature's Mistakes"). Into the category of the "monstrous" Bacon placed not just the physically unusual or inexplicable (including those disabled people born with impairments, although not those who acquired them later in life, and similarly "abnormal" animals, considered the realm of teratology), but also non-Western, non-Christian and politically or religiously "heretical" peoples (conceived of as "multitudes" rather than individuals), who Bacon regarded as having "taken in their body and frame of estate a monstrosity", thus using imagery derived from disability to demonise non-disabled (or not-necessarily-disabled) minority groups and anti-establishment movements. Bacon was thus, in Linebaugh and Rediker's critique, one of the pioneers of the use of "scientific" or "rational" justifications for colonial and capitalist oppression.

(Similar critiques of Bacon have also been made by feminist writers such as Carolyn Merchant, and a critique of the classical conception of Nature as "female" and requiring domination by (male-identified) Civilisation, thus linking the oppression and exploitation of women in capitalist patriarchy with the destruction and exploitation of nature by industrial civilisation, is central to the movement of ecofeminism, which IMO very nicely complements Linebaugh and Rediker's critiques.)

The "seven heads of the Hydra" identified by Bacon in "An Advertisement Touching a Holy War" were indigenous American resistance to colonisation, landless commoners dispossessed by enclosure, pirates, "land rovers" (various types of beggars, itinerants and petty thieves, or what Marxists would call "lumpen"), assassins (aiming to kill the king or other members of the ruling class), women rebelling against male domination, and religious radicals such as the Antinomians (who preached a sort of early Christian anarcho-communism). More generally, the Hydra and other multi-headed mythical monsters were used as symbols of any diverse and decentralised movements which threatened the top-down, hierarchical order of the state and capitalism, seen as terrifying and unnatural because of their lack of a single, centralised "head" and their tendency to spring back from defeat in new and different forms, making them near-impossible to entirely eradicate.

While disabled people are not directly mentioned in Bacon's list of the "Hydra's heads", there is a clear connection to the oppression of disabled people, just as there is to those of women, indigenous peoples, religious minorities and the working class. Many of the obscure categories of beggars and itinerants in the long list Bacon classed as "land rovers" - shown here, bullet point 4 - would have included disabled people or those who used perceived impairment or disability to beg or elicit sympathy ("Abraham-men", for example, were beggars who claimed to be on release from Bedlam, one of the earliest "total institutions" in which disabled people were incarcerated), and of course the pirate with a hook hand, peg leg or eye-patch is one of the most enduring images of disabled people as villains in popular culture. The same processes of enclosure and industrialisation that furthered the oppression of women in the nuclear family and of non-European people in the colonial system also shaped the oppression of disabled people in workhouses, asylums and the "Poor Law" system (see for example Mike Oliver's "The Politics of Disablement").

Looked at in the light of this symbolism, the choice of the name Hercules for the male antagonist in "Freaks" takes on much greater meaning (even if this was unintentional on Browning's part). The diverse and chaotic multitude of the "freaks" themselves clearly parallel the Hydra and the other chthonic beasts that the mythical Herakles fought against, and are living, self-determining examples of Bacon's category of "nature erring". In the pivotal scene where Hercules, leaving his caravan on a stormy night, is ambushed by a diverse multitude of "freaks" wielding various weapons (also calling to mind the motley pirate crews of the 17th and 18th centuries which formed one of the heads of Bacon's Hydra), they appear almost to emerge from the earth itself, like the chthonic beasts, and, as the overturning of the caravan by the storm aids their vengeance, to be assisted by the untameable power of nature itself. Thus, in their merciless revenge on both Hercules and Cleopatra, they can be seen not so much as reverting to villainous stereotype as literally becoming the personification of the chaotic, untameable natural forces that they were stereotypically identified with and that were demonised by the same oppressors and colonisers as they were themselves.

The true power of the use of the name Hercules and (perhaps unintentionally) the symbolism of the Hydra in Browning''s "Freaks" is that it is a subversion and inversion of the patriarchal myth: the "freaks", representing human biodiversity in all its untameable chthonic forms - that which the patriarchal "Herculean" allegory of Bacon categorised as "nature erring" - defeat and mercilessly destroy the brutal, arrogant "Hercules" - representing male domination and the "might makes right" ideology of physical superiority - and convert Cleopatra into one of them, in what is both an ironic punishment (making her into that which she despised and exploited), and a reminder that disability is not "nature erring", an aberration to be dismissed as outside and "Other", but an integral part of the diversity of nature "in its course" and a category that anyone can join and no one is entirely separate from.

Both Browning's "Freaks" and "The Many-Headed Hydra" are incredibly inspiring to me. When the connection between them occurred to me, it was one of those moments of almost indescribably overwhelming connection that are probably what drives me to write in the first place - in fact, this is one of the posts that i have been intending to write since before i even started this blog (which i recently realised is over 2 years old... where the hell did all that time go?) - so, no wonder that it's grown to about 3 times the length i initially intended to. Linking together seemingly wildly disparate and disconnected - but actually closely paralleling and intertwined, if looked at from the right perspective - things together is one of my major perseverations, and so, for that as well as the more obvious political and identity-based reasons, the symbol of the Hydra has massive significance for me, and reclaiming it - like other archetypes of monstrousness - is, IMO, enormously powerful.

It's fun to speculate on who constitute the present-day equivalents to Bacon's 7 "hydra heads" - disabled people and other groups demonised as "scroungers" or "the undeserving poor"? queer, genderqueer and trans* people? indigenous peoples (still)? the environmental direct action movement? I am sure there are more - but more than that, it is immensely inspiring - for me, anyway - to think of oneself as part of such an irrepressible, indestructible, ever-changing and ever-renewing force of nature that has sprung back in newer and stranger forms after every attempt to cut it down by authoritarian systems seeking to impose artificial orders on the inherently, joyously chaotic diversity of nature. Long live the Hydra!

The Neurotypical Privilege Checklist - absolutely essential reading

2009-07-29T22:13:00.002+01:00

This list compiled by Bev of Asperger Square 8 is not only incredible, it's something that i absolutely cannot believe hasn't been done before - and yet, Googling for "neurotypical privilege", the only thing i can find that isn't a link to Bev's post is this post by Hexy (which is also valuable, as it makes the very important point that "neurotypical" isn't defined solely in opposition to autism, but to other types of neurodiversity as well, some of which some people with a narrow definition of "neurodiversity" don't recognise as such - i could go off on a huge tangent about that, and the absurdities it causes people to come up with - such as someone on one autism message board using, apparently without irony, the phrase "neurotypicals with learning difficulties" - but this is enough of one already) - so, no, it appears it hasn't already been done, and i congratulate Bev for doing something that was long, long overdue.

The list is already incredibly long, and i'm (as i always seem to be) late to the party, so i don't know whether i should attempt to add anything to it (although i've thought of a few areas that the list *might* not already have covered). I'm willing to help with trying to arrange it more systematically, if wanted, though (and of course should be saying this in a comment on the list itself, not here). Some items from it that stand out particularly powerfully for me:

# If I am an adult, I can be a sexual being without the assumption that any partner attracted to me must be a predator or pedophile.

# My partner can express attraction to or admiration for aspects of my behavior or personality which happen to be characteristic of my neurology without his being seen as attempting to take advantage of a weaker person.

# If I am in a relationship with another person of my neurological type, the reaction of society is not that no one else would date either of us.

# If I am bullied, people will not assume that my neurology means I am at least partially to blame, or that the bullying would stop if I tried harder to behave like someone non-NT.

# I do not have to carry a special card or bracelet with me that explains how my neurology presents itself, because it is otherwise unsafe for me to be out of my house alone because of how law enforcement or other institutions might treat me for showing my natural body movements or the sounds I naturally make.

# The skills and talents at which people of my neurology tend to have an advantage, around which the system of the society in which I live is founded, are presumed to be objectively more important than those more commonly found in people of other neurological types.

# My deficits are not considered deficits at all. Instead, they are considered universal faults in human cognition (even if they are not universal). And a good deal of effort is undertaken by my entire society to compensate for those deficits.

# I am not expected to alter or suppress my natural ways of moving, interacting or expressing emotion in most circumstances.

# If I fail to alter or suppress my natural ways of moving, interacting or expressing emotion, I do not fear public ridicule or exclusion because of this.

# I will never have people tell me that I am a mindless waste of space and then deliberately fail to make any attempt to save my life in an emergency.

# I am never told that the fact I have a certain cognitive skill means that I am lying when I say I lack another cognitive skill. Nor am I dismissed as incapable of things I truly can do, because I lack certain cognitive skills.

# I can tell the truth without fearing that the other party will assume I'm lying due to my natural body language and degree of eye contact.

# People don't things to me like, "You don't really seem neurotypical," or "If you hadn't told me, I would never have guessed you were neurotypical," and expect me to take it as reassuring or complimentary.

# My opinions on social mores and societal issues will never be dismissed based on my neurology or on the assumption that I am simply "not understanding how these things work". Even when others of differing neurology agree with me

# Nobody tries to one-up me by implying that their family member is more NT than I am and I must thus be incapable of understanding any of said family member's situation.

(not all of which directly apply to me, but many of them do - and, of course, people from any given minority group may sometimes experience some aspects of the privileges accorded to the corresponding dominant group, whether because of sometimes "passing" as a member of that dominant group, or other factors like variation within minority groups being used exploitatively, such as subsets of a group (often those most superficially like, or least challenging to, the dominant group) being picked out as "good" minority people and given some pieces of (temporary, revokable) privilege as a "divide and conquer" strategy...)

Lindsay at Autist's Corner and Kassiane at The Rett Devil's Rants have also posted about the Checklist, and it seems to be getting reflected to a lot of places, which can only be a good thing - let's hope it makes some major ripples beyond just the internet...

One quick thing that comes to mind for me is how difficult it is - even for me as a radical and highly politicised activist - to see many of these things as truly "privileges", in the radical political sense of things that are not only unfair, but can be changed by society, rather than simply "the way things are" - biological facts that should just be accepted as true and not challenged. Internalised oppression runs deep, and it's even stronger where it's not recognised as oppression, and privilege is not recognised as privilege. Part of the reason this privilege checklist excites me so much is because it has the potential to open people's minds to a form and level of social bias that i honestly think the vast majority of people - maybe even the majority of disabled people, maybe even the majority of disability rights activists, maybe even the majority of autistic people - don't even realise is there, and therefore open up incredibly exciting perspectives of truly radical social transformation on levels more pervasive than many or most people might even imagine that society could change...

While posting on this, i'd better acknowledge some of the other privilege checklists that inspired this one:

White Privilege: Unpacking The Invisible Knapsack (possibly the original "privilege checklist")
Male Privilege Checklist
Able-bodied Privilege Checklist
Straight Privilege Checklist
Cisgender Privilege Checklist

When i have read the Neurotypical Privilege Checklist more thoroughly and decided whether the items i have thought of are worth adding, i'll post them here too...

Jessica Davanzo Must Stay In The UK!

2009-07-09T10:28:00.004+01:00

Jessica Davanzo, a survivor of domestic violence and a Personal Assistant essential to her disabled employer, has been unjustly threatened with deportation by the Home Office, in direct contradiction of its claim to be "building a safe, just and tolerant society".

Jessica Davanzo, originally from the US, moved to the UK on a 2 year visa in October 2006 after marrying her ex-husband, a UK citizen, and breaking all ties with her former life in the US. However, after she moved to the UK, but before her visa came up for renewal for indefinite leave to remain, her husband started abusing and threatening her, forcing her, after many attempts at relationship counselling failed to have any effect on his increasingly abusive behaviour, to leave him, move to another town (Northampton) and start a new job.

Soon after this, and possibly as a result of the stress and trauma she experienced, in June 2008 Jessica became ill with a neurological condition called Guillain Barre syndrome, which resulted in her spending 6 months in hospital and being temporarily paralysed, needing intensive rehabilitation to regain the ability to walk, as well as having longer-term effects of chronic fatigue and back pain, and being unable to work for 10 months. Due to her immigration status Jessica had no access to any form of UK state benefits, leaving her destitute and at risk of homelessness.

As a result of this experience of impairment and the awareness of disability it brought with it, after her recovery Jessica decided to work as a PA (Personal Assistant) for a disabled employer, Roxanne Homayoun. Roxanne, who has physical and visual impairments and requires 24-hour assistance, and is an activist for disability rights with an MA in 20th century history, said "Jessica is such a truly positive, honest, and principled person that she has helped me to see that many of my dreams are still achievable, they just need modifying. I would be absolutely devastated if Jessica is deported."

In the notice of decision dated 3rd June 2009 (which Jessica only received on the 10th June), she was informed that there was "no right of appeal against this decision" which she was later told by an immigration solicitor was not in fact true. Jessica and her solicitors are now seeking a judicial review of the decision. She was also told, despite several police reports and a supporting letter from Victim Support, that "you have not produced evidence to confirm that your marriage was caused to break down during the probationary period, as a result of domestic violence".

Jessica's case brings together issues of vital concern for feminists, disability rights activists and all those who support the free movement of people across borders. The UK Government's decision to demand that she leave the country shows a complete disregard for the circumstances of women fleeing abusive relationships (if she had stayed within the relationship and continued to submit to her ex-husband's violence, she would have been permitted to stay in the country - what message does that send to women trapped in such situations? This is victim-blaming at its worst - women being punished for getting out of a life-threatening situation or rewarded for staying within it) and for the incredibly important role of PAs in maintaining disabled people's independence.

The letter Jessica received from the Home Office claims that forcing her to leave the UK is not a breach of Jessica's human rights under Article 8 of the European Convention on Human Rights. However, they have totally failed to take into consideration the human rights of her employer, Roxanne, whose physical safety, freedom of private life and ability to participate in political society would all be put in serious jeopardy by the loss of her PA, given the extreme rarity of PAs with whom disabled employers are able to build up the sort of relationship (itself arguably "family life" under Article 8 of the ECHR) enjoyed by Roxanne and Jessica.

If the UK government cared either about women survivors of marital abuse or about disabled people who need assistance to live independently (for whom it can take an extremely long time to find a PA with the right attitude to genuinely support their human right to choice and control over their own lives, and for whom losing such a PA could easily result in risk of institutionalisation or life-threatening neglect), then it would not have threatened Jessica with deportation. Jessica Must Stay!

There is an online petition to let Jessica stay in the UK here and a Facebook group in support of her (with at the time of writing over 160 members) has been set up here.

Roxanne and Jessica are friends of mine, and came to the recent DAN actions in London and Birmingham that i blogged about. This is the press release that i sent last night to national newspapers, Northampton local news, Midlands/East regional TV and radio, the UK radical/"left-wing" press and UK disability organisations. Please forward to anyone else you think is relevant...

Edit as of 22/09/09: I've disabled commenting on this post for now, as for some reason it keeps attracting a steady stream of Chinese/Japanese(?) spammers, and it's getting to be too much hassle to keep deleting them. There hasn't been any change in Jessica's situation that i know of, but i'll edit the post again if i hear anything.

Recent Links of Awesome #5

2009-06-27T21:26:00.003+01:00

I don't really know why i haven't blogged in over 2 weeks; there have been lots of things i've wanted to blog about, i've just somehow not quite had the energy or motivation to do so. I've also been trying to organise quite a few things in the offline world which have been taking up a lot of my time and energy. Anyway, there are things i'm really going to try to write about in the next week or so, but in the meantime, i thought i'd do a link post, as i've read quite a few really good posts on other people's blogs recently...

Bev at Asperger Square 8 has a powerful and moving post called Flocks, which (even though i don't have/do the pet/caged animal thing) has a hell of a lot in it that strongly resonates with me. I need to post more about friendship/social group dynamic issues.

Urocyon is a blogger that, somehow, i've only just discovered (from her comments here) - a Native American autistic anarchist living in the UK (it always pleases me to find other anarchist/libertarian-socialist people on the spectrum "out there", and especially in the UK... tho there are actually quite a few i know of now, whereas even 5 years ago i couldn't imagine encountering more than the one i already knew...), and i've been really enjoying reading through her posts. This one particularly stands out to me as worth linking, as i think it really brings together disability-rights and post-colonial critiques of charity (and puts them in an anarchist context), and a proper libertarian-socialist critique of the concept of "charity" that incorporates all those perspectives is both something i'm incredibly excited about, and long overdue...

Lindsay at Autist's Corner has several posts about the revision of the DSM (which i really need to blog about), including this one on "autogynephilia" as a pathologising categorisation of trans women, which links to this (scary but essential reading) post at Feministing by Julia Serano about aspects of the DSM revision that "should be of great concern to feminists, as well as anyone else who is interested in gender and sexual equality". Lindsay also recently posted a link to this study linking autism and trans/genderqueer identity, which is (IMO) nothing new, but interesting as "official" confirmation of the intersection nonetheless.

cripchick has a great discussion about what constitutes accessibility, to which i have pretty much nothing to add, but which is probably actually the best resource for planning accessible events - in as broad a sense as possible, and going beyond just disability/impairment issues - that i have seen anywhere on the web.

AnneC at Existence is Wonderful has written a great 2-part post called "On The Feeding of Quirky Mammals" (part 1, part 2), on autistic issues to do with food, hunger and appetite (the only reason i haven't commented on it is because my response would probably be as long as the post itself - in fact, i may write my own post on the issue). Her experiences are in many ways similar to mine, but in other ways very different - but this is yet another area that massively needs an autistic-led "literary conversation".

Finally-for-now, for a bit of humour too good not to share, the latest xkcd comic is utterly awesome (and so often me... well, if you replace the maths with esoteric sociopolitical theory-stuff) - i've long suspected that Randall is on the spectrum, and there are hints in a couple of earlier comics (such as this one), but this one is, i think, as near to proof as could ever be needed.

More soon...

Reclaiming words: Who can reclaim what?

2009-06-10T23:36:00.002+01:00

I suppose i'd better start this post with a warning, however obvious it might be: this post will, by necessity, contain many words which many people will find hurtful and/or offensive. It's pretty much impossible to talk about the politics of reclaiming words used against minority groups without using those words, so if you are someone who is triggered or offended or similar just by seeing those words in print, then don't read this post, because it would be impossible for me to write it without using them. (Some may think that that means i shouldn't write this post at all; they should be right. Give me a convincing argument that i shouldn't have written it in the comments, and i might agree with it - but this post is, itself, an attempt to address that debate...)

I've been vaguely thinking about the politics of reclaiming offensive words for quite a while, but a few recent discussions in different places inspired this post. Firstly, there was a subscription request to an email list that i am a moderator of (which, incidentally, has nothing at all to do with disability, or any minority/identity politics - it's a local climate change activist list) from someone whose email address was "retardedgimp@_______.com". This pretty much stopped me in my tracks - my first thought was to delete it as the person must have been trolling and have registered that email address solely to be offensive. Then i thought of other possibilities - that it might actually be a disabled person reclaiming the terms "retarded" and "gimp" as positive self-description... or that it might be a non-disabled person who was, perhaps somewhat misguidedly, using the "non-PC" or "outsider" value of those words as some sort of intended-to-be-positive (although probably still offensive) jokey self-deprecating/self-aggrandising (depending on which way round you look at it).

I posted in my Facebook status that i wasn't sure how to respond to it, and got a few responses - the first (from someone who, i think, assumed the owner of the email address was a disabled person) saying:

Is it really any different to someone calling themselves a "cripple"?

For some reason most disabled people respect the reclamation of most old, offensive words, except retarded. Retarded is seen as evil at all costs and must never be used.

I'm in favour of reclamation equality. If I can call myself a cripple then a learning disabled person has every right to call themselves a retard.

However, another person responded: "i actually dont even like people whose impairments don't cause spasms using the term 'spaz'" - implying arguably that the term "retarded", by analogy, was reclaimable, but not by all disabled people, only by those with learning disabilities - despite the fact that, in my experience, "retard" gets used as an insult for anyone who appears to be disabled, whether the impairment is physical or mental, and so does "spastic"/"spaz" (although there may be UK/US differences there - i seem to recall reading about someone in the US who grew up thinking that "spastic" referred not to the muscle spasms typical of cerebral palsy, but to behaviour typical of people with ADHD - perhaps similar to casual usage of "manic" over here?)

I think the first commenter was right that, of the many common disability-related slurs and insults, "retard" is the one that never or almost never seems to be reclaimed. I've been struggling to articulate why i think that is, and why there seems, for me, to be an inherent negativity in "retard" that makes me feel like it, unlike "crip", "gimp" or even "spastic", is unreclaimable, that it's something people would never want to call themselves - is it the mind/body dualism (which i think is a false one) so prevalent in our culture that makes terms referring to the state of someone's mind somehow seem more "fundamental", more "intrinsic" to a person than terms describing the state of someone's body? (and, if so, why do i not mind the reclamation of terms like "nutter" and "mentalist"?) is it the meaning of "slowed" or "delayed" that just seems inherently negative, with nothing reclaimable for positive meaning within it? or is it something entirely different? could there even be internalised vestiges of patronising stereotypes in my perception of it as more unambiguously negative than physical-impairment-related words (learning-disabled people being seen as intrinsically unable to defend or define themselves)?

Looking around for discussions in the disability blogosphere about reclaiming words, i found this post by PhilosopherCrip (whose blog i have somehow been ignorant of, despite friends like cripchick being regular commenters there - and there's another thing - can i imagine a blogger calling hirself "PhilosopherRetard" or "retardchick"?), discussing different usages within the disability community of the word "crip" - as a term that can be used as a political identity for all disabled people, or only for those with physical impairments? Even within the radical part of the UK disability rights movement, i find people who use both senses of the word - some physically impaired activists explicitly including all disabled people, regardless of impairment, in it, while a visually impaired activist friend uses it in a sense that very clearly doesn't include himself, for example critiquing paradigms of personal assistance as "all defined by crips" (meaning physically impaired people to the exclusion of other categories of disabled people). I find my own use of the term to be ambiguous, not actually certain whether i am using it in the inclusive or exclusive sense, and never quite certain whether, as an "able-bodied disabled" person, i can use it to include myself - but i've never felt that i shouldn't use the term at all, as the friend who commented on my Facebook status clearly felt about "spaz" (and many trans people do about "tranny"; see further down this post).

In the comments to PhilosopherCrip's post, cripchick says "but to switch it up a bit, if ND really took power in ideology and the shaping of our movement, what would the disability community look like if everyone called themselves aspies?" It's interesting that my first reaction to that is "that's a completely different thing", seeing "A/aspie" (i'm never sure whether or not to capitalise, TBH) as far more specific, and feeling both that physically impaired people could and should object to "aspie" being used as a blanket term for all disabled people, and that i would be uncomfortable with the term being used to refer to a person who was physically (or otherwise) impaired but not on the autistic spectrum.

Then again, i have mixed feelings about the term "aspie" anyway; for one thing, i'm not sure that i want a term deriving from the name of a doctor who studied autistic children in the 1930s to be a part of my identity, for another i think it's a loaded term with regard to the so-called distinction between "Asperger's syndrome" and "(non-Asperger) autism", which i think is a totally untenable one (the ever-amazing Amanda Baggs has great posts about this here and here), and i don't want to support that division; but sometimes i do use it to refer to myself, as a convenient shorthand, or for example when saying that someone "has a few Aspie traits" (where those would usually be traits of the general type of autism which is highly verbal but impaired primarily in non-verbal communication). "Autie" could be an alternative, but then that tends to get used in phrases like "aspies and auties" to refer specifically to "non-Asperger autistics", so that's problematic too; in the end, for my own self-definition i think i prefer just using "autistic".

This isn't just a debate in the disability sphere: recently on Questioning Transphobia, there was a repost of a call for submissions for a book called "Gender Outlaws: The Next Generation" by Bear Bergman, and in both places heated discussion emerged of the reclaimed-or-otherwise status of the term "tranny", which seems to be somewhere between "crip" and "retard" in the reclamation stakes - in that, unlike "retard", there are significant numbers of people trying to reclaim it, but unlike "crip", there are significant numbers of people who don't think it should be reclaimed at all (or, at least, i don't think i've seen that attitude to "crip") - but, like "crip", there is also a debate about whether a wider group (in this case, all trans* people) can reclaim it, or only a narrower subset (in this case, trans women) within that group, with many trans women making a convincing case for the latter based on the fact that it is primarily, if not exclusively, trans women against whom "tranny" is used as an insult. I'm a bit agnostic on this one, as it's not a term that applies to me in either case (although i might fall within some definitions of the term "trans", i am cissexual and pass as cisgendered), but i am not certain whether, for instance, i should call out its usage when a male-assigned-at-birth genderqueer friend who falls somewhere between "transvestite" and "transsexual" on the transfeminine spectrum (he performs a female gender role without intending to pass, but uses male pronouns when not doing so) refers to his performing female gender as "going out trannying", or to "heterosexual trannies" (meaning heterosexual men who sometimes dress as women, rather than, as i would have assumed he meant, trans women who were exclusively sexually attracted to men).

I find myself agreeing with the commenter at Questioning Transphobia who says that "it has as much to do with misogyny and male dominance as transphobia"... but then i also find myself agreeing with another commenter who says "How the hell is it transmisogynistic for someone who was male assigned at birth, (I’m pretty sure still does, or at least has in the past) identifies as femme, usually uses female pronouns, and in general moves through the world as a woman, to use the word tranny?" - however, this one is clearly not my battle. With both "crip" and "retard", i'm not entirely sure whether it's my battle or not - "crip" is if it refers to all disabled people, but not if it only refers to physically impaired people, and "retard"... well, arguably includes me as a cognitively impaired person, but then, at school i was bullied and insulted for being "too clever", not the opposite, and as an adult have encountered terms like "nutter" and "psycho" used hurtfully far more often than "retard" (if i've ever been on the direct recieving end of the latter, which i'm actually not sure of).

I've seen this sort of thing happen with racial and ethnic insults too; apart from the reclamation of "nigger" in hip-hop culture (which has been discussed exhaustively all over the internet, although i'm too tired to find links now), the word "Paki" was used extensively by young people of Pakistani origin in the town i grew up in to refer to themselves and each other (the main ethnic group most of them actually were was Pashtuns, some of whom were from the Afghani rather than the Pakistani side of the border), but there was disagreement over whether non-Pakistani South Asians (such as Sri Lankans and Bangladeshis) were "allowed" to use the term, and its casual usage among Pakistani youth caused a lot of non-Pakistani young people to feel they could use it without that usage being racist... although in some cases it definitely was (for example, one white convert to Islam i knew who had no hesitations about using it disparagingly, saying for example things like "Pakis aren't proper Muslims").

(Actually, i will say one thing about "nigger": if i hadn't downloaded Saul Williams's most recent album "The Inevitable Rise and Liberation of Niggy Tardust" when he made it available free for a limited time from his website, i would definitely have felt uncomfortable asking for it in a shop. Its title track itself plays on the discomfort white hip-hop fans have with the word "nigger", with its chorus "When I say Niggy, you say nothing" - the name is also a pun on David Bowie's Ziggy Stardust.)

Of course, i can't have a post about reclaiming words without mentioning "queer", which i think in some ways is both the most and least problematic of all reclaimed words, precisely due to its being by far the widest in scope (unless anyone can think of another?) - as someone recently said to me with reference to the trans/transgender/genderqueer debate, the problem with "queer" is that it is so wide in scope that it can mean almost anything that people want it to mean - and yet, despite the massively wide reclamation of "queer", to such an extent that many people have stopped seeing it as an offensive or even formerly-offensive term (and thus, perhaps, it's even lost the subversiveness and radical edge that it once had in terms of being deliberately chosen as a self-identifying term because of its offensiveness), i know people from some parts of the UK who, despite only being in their late 20s, find it strange that "queer" can be used as a "positive" term because they grew up hearing it used only as an insult. Anyway, extremely long books could be (and probably have been) written about "queer", and i still have some more specific posts planned on that word and how it relates to me, so i won't go into it any further here...

Like with my previous post about disability terminology, i don't have any answers here; i'd just like to throw it out to debate, largely because, while i've seen plenty of discussions about the appropriateness or otherwise of reclaiming particular words with regard to disability, gender identity, race/ethnicity and sexuality, i'm not sure if i've ever seen any attempts to put together a coherent analysis of reclaimed words across all dimensions of oppression (and i'm very aware that there are many i haven't even touched on here - words for sex workers, for example, or words for female genitalia used as insults, to pick two obvious categories... and i'm sure there are more).

A pattern i find particularly interesting that crops up repeatedly is the ambiguity of how widely words can be reclaimed - just where are the boundaries of the group allowed to do the reclaiming? - which seems to me to feed into much bigger questions about identity politics and whether it's unitive or divisive, the fluidity of identities and just how "self-defined" identities relate to those defined from outside or "above", etc - which is of particular interest to me with regard to my strong feeling that all people who are oppressed or discriminated against because of biological or cultural difference have common interests and parallel experiences, and have much to gain from allying with one another - yet at the same time, the identities of individual minority groups can be fiercely and jealously guarded, and there is a fuzzy and incredibly difficult (for me, anyway) to locate line between alliance, analogy and appropriation (I tend to have a vague and general discomfort with the idea of words that some people are "allowed to use", but others are not, which i think also needs to be somehow factored in here)... what do people think of this? Any and all responses welcome...

Terminology request: trans and genderqueer

2009-06-06T19:26:00.003+01:00

I want to post in more detail about this sort of thing, but haven't time/spoons right now - however, i've had a couple of conversations (one here, the others have been with an offline friend and on Facebook) where the same thing has been mentioned, so i'd like to ask others what their opinion/usage is...

It seems like the ways that i use the terms "trans" and "genderqueer" is the opposite way round from how many (most?) other people use them:

I tend to use "trans" to describe people who either transition from one sex to another (transsexual) or who deliberately present themselves as the (broadly) binary gender opposite to that traditionally associated with their physical sex (transvestites/crossdressers*, drag performers, etc), and "genderqueer" to mean a much broader group of people, including the genderless/agendered (like myself), those who feel they are a mixture or composite of both "binary" genders, those who feel they have a strong gender identity but that it's not one of the binary genders, etc - basically, anyone who isn't cisgendered (and possibly some people who are cisgendered, but still oppose the gender binary). Thus, for me, most (if not necessarily all) trans people are genderqueer, but not all genderqueer people are trans (I tend to say that i am genderqueer but not trans).

*I'm also not sure what the difference between those 2 groups is, although i've been told that there is a difference (which confuses me a bit as the terms are respectively Latinate and Anglo-Saxon synonyms for each other). I tend to get hung up on the idea of clothes having gender, as to me, as clothes are inanimate, the only gender an item of clothing has is that of the person wearing it (shades of Eddie Izzard's "It's not women's clothing, it's mine") - but that's a side issue...

However, it seems like a lot of people - possibly the majority of trans/genderqueer activists - see the terms the other way round, regarding "genderqueer" as a subset of "trans" - thus "trans" being the more inclusive term, including anyone not cisgendered, and "genderqueer" being the non-binary or non-transitioning subset within that...

So, what is the generally-agreed-on usage (if there is one)? Would the majority of people in the trans/genderqueer/etc community consider a cissexual, non-transitioning genderqueer person to fall within the definition of "trans"? Is "genderqueer" best understood as a subset of "trans", or vice versa? Or is neither strictly speaking a subset of the other, but more like an overlapping Venn diagram - where some/many/most trans people are also genderqueer and vice versa, but there are both trans people who are not genderqueer and genderqueer people who are not trans?

For me, i think it would feel somehow unfair and/or appropriative to call myself "trans" - like i was claiming the identity and/or experiences of other people for myself, when i really don't have those experiences at all - i have never experienced body dysphoria, for example (or indeed identification with my body either positively or negatively), nor have i or likely ever will i experience being read as the opposite of what i identify as (more as something that has no relevance to my identity either way, which is, i think, far less traumatic and more just vaguely silly - being described as "male" or "a man" does make me feel dissonance, but only in a slightly bemused way, not the profoundly upsetting way that it affected many of the trans women i know) - but then, i don't feel like i'm being appropriative when i call myself "disabled", despite the fact that i don't have the experiences of a physically impaired person and that, for many people in the cultural mainstream, "disabled" means "physically impaired" - but is me-as-a-non-transitioning-genderqueer calling myself "trans" more like me-as-a-mentally-but-not-physically-impaired person calling myself "disabled", or more like, say, someone with a physical (but no other) impairment calling hirself "neurodiverse" (which i would consider appropriative)?

So, um, yeah. I can't seem to find any "official" definitions of "trans" or "genderqueer" stating which of the two is the more inclusive term, and i'm not 100% sure where my own (possibly wrong) understanding of the definitions came from - most likely from conversations with the trans woman friend who first opened my eyes to the existence of gender identity (prior to knowing her, i had lived under the impression that gender identity isn't innate for anyone, but comes entirely from socialisation processes that i had missed - a position that i think some cissexual socialist and radical feminists still seem to take), and others i got to know through her, who were all fairly "feminine", binary-identified fully-transitioning trans women (it wasn't until much, much later that i even knowingly met any trans men or FAAB genderqueers, which makes me still find the common assertion that trans men and FAAB genderqueers dominate trans community and discourse very strange and not-my-experience), to whom i would be a "trans ally", but pretty definitely not "trans" myself...

So if anyone can shed any light, i'd be grateful, as i don't want to be using terms at cross-purposes to others using the same terms, especially with the levels of emotional investment that many people seem to have to them. I, personally, am not so strongly attached to my usage as to want to cling on to it in the face of opposition, as i basically feel that i know what i am, even if i don't know the "correct" word for it - but i don't want to use terms to describe myself that inadvertently either appropriate others' experiences, could be construed as denial or distancing from other people on the gender-variant continuum, or would seem to most people to be inherently nonsensical or self-contradictory...

Oh, the irony: part 3

2009-06-03T22:40:00.003+01:00

Previous posts in this picture series: Part 1, Part 2...

This is a photo of the doorway of an estate agent's on Kings Heath High Street, Birmingham. It shows the lower half of an old-fashined shop doorway, with part of a window visible on the left (in the window is one of those office-type blinds, and you can see some adverts for houses). The door and window frame are painted dark blue. On the door, above 2 letter boxes, is a sign which says "Inclusive Access for Disabled Customers", in white on a blue background. Below the text on the sign are symbols of a wheelchair user, a person walking with a cane, an ear with a bar through it (symbolising hearing impairment) and an eye with a bar through it (symbolising visual impairment). Next to it are 2 smaller signs, one advertising a hearing aid loop and one saying "No Smoking".

In front of the door is... A STEP. A big, stone step - i would guess the height is about 8"/20cm from the pavement to the level of the door. There is no ramp, there is no alternative entrance, not even a bell or buzzer saying "please ring if you need assistance". Yes, that's right, the shop is completely inaccessible to wheelchair users. Presumably, the business owner must have thought that just putting a sign on the front door saying "Inclusive Access for Disabled Customers" would somehow magically make that inclusive access a fact, and/or was an acceptable substitute for actually making hir premises accessible.

WTF???

Disability, Gender and Horror in "Planet Terror" and "The Orphanage"

2009-05-25T14:11:00.006+01:00

Note: this post contains spoilers for both films mentioned in the title. If you haven't seen either of them, and would like to see them without knowing what happens in them beforehand, then don't read this before watching them!

The Orphanage (original Spanish title El Orfanato), directed by Juan Antonio Bayona, and Planet Terror, directed by Robert Rodriguez, are two recent-ish horror films which, like many in the genre (but possibly more explicitly than most) contain strong disability themes. Both films, according to Wikipedia, originally came out in 2007, although i'm not sure if the UK cinema release of either was in 2007 or 2008; I have owned DVDs of both for several months, but only got round to watching them in the last couple of weeks, hence my reviewing them now. Apologies to Lisy and Tera for stealing their blogging turf ;)

The films are from opposite ends of the horror spectrum (Planet Terror is a homage to 1970s "exploitation" films, with an emphasis on gore, action, special effects and "rule of cool" characterisation, while The Orphanage is more of a supernatural/psychological "chiller", with quite an "arthouse" vibe (although it has to be noted that anything filmed in a language other than English and/or subtitled tends to get put into that category in the mainstream press, even if it's wildly inappropriate)), and they have extremely different visual styles. Nonetheless, there are several parallels between them; both were produced by a more famous director than those who directed them, and used that director's name heavily in marketing (Quentin Tarantino in the case of Planet Terror, and Guillermo del Toro in the case of The Orphanage). As well as the disability themes, both play to an extent on gender roles using female protagonists (conventionally or otherwise), and both can be seen (albeit through readings that may not necessarily correspond with authorial intention) as critiques of paternalistic medical and social "care" systems.

In Planet Terror, the main protagonist (played by Rose McGowan) is a sex worker who becomes disabled early on in the film, losing a leg as a result of a zombie* attack, and first gets a broken-off table leg as a makeshift prosthetic, then later (actually surprisingly late in the film for me, given it being the iconic image that was plastered everywhere of the film) gets her leg replaced with a machine gun, which she uses (rather implausibly, seemingly able to fire it by moving the leg stump alone - tho that fits in with the general over-the-top, stylised tone of the film, a Tarantino hallmark shared with the somewhat thematically similar Kill Bill) to massacre zombies and save the day, thus gaining power and purpose as a disabled person with assistive technology - in fact, becoming an effective saviour of humanity as implied by the ending - that she never had in her pre-impairment life, which, IMO, even if Rodriguez didn't realise it, is an audacious subversion of the usual disability tropes found in horror and action films (where disabled characters are nearly always either pathetic victims, mentor/mastermind types detached from the action, or monstrous villains/antagonists).

*Some purists may argue about whether the "zombies" in Planet Terror are actually zombies, as they are mutated by a virus rather than reanimated from the dead by supernatural means. However, they act like zombies, and even on the DVD cover Planet Terror gets described as "a kick-ass zombie movie"... so i'll call them zombies for convenience.

A secondary protagonist, a female doctor (played by Marley Shelton) at the hospital where the zombie plague is first discovered, is also rendered (temporarily) physically impaired by her abusive husband (who is also a higher-ranking doctor, played by Josh Brolin) when he finds out she is attempting to leave him, by injecting her hands with anaesthetic and paralysing them. Despite this, however, she still manages to escape from the cupboard he locks her in, get into her car, rescue her son and drive to her father's house, while fighting off several other antagonists along the way. Brolin's character is also portrayed as enjoying the power he has over his patients in a particularly arrogant and sinister way, and can be seen as representing the authoritarian nastiness of patriarchal medicine (one could even see Shelton's character as representing a more positive vision of medical professionals allied to their patients or the community rather than to "the system", or as a medical professional whose "switching sides" by becoming disabled herself parallels her decision to liberate herself and her son from the abusive family relationship). Brolin's character also ends up becoming one of the "infected" himself, linking his patriarchal and medical authority with the military-industrial conspiracy origin of the plague.

Thus, Planet Terror is, for me, that unusual thing, a relatively-mainstream horror movie that seems to be thoroughly and unambiguously on the side of the oppressed - unlike the many other horror films in which disabled or otherwise marginalised people, when they gain power, use it for evil and have to be destroyed, in Planet Terror they are the protagonists and use their power to save the world (and even survive at the end, where the male, non-disabled, martial arts expert protagonist dies!), while the establishment-upholding institutions (medical, police and military/government) are portrayed as corrupt, evil and monstrous. (thanks to Tera for that insight :) )

The Orphanage is rather more ambiguous. The plot centres around a couple with an adopted son who buy the former orphanage that the mother (played by Belen Rueda) grew up in, with the intent of re-opening it as a "home" for disabled children. Their son is himself disabled, albeit without knowing it at the start of the film, as an HIV-positive adopted child (it's implied by his appearance and some incidental dialogue, but not explicitly stated, that he was presumably adopted from an institution in a developing country, probably (given the Spanish-language setting) somewhere in Latin America - although this isn't really touched on in the plot), but his parents are keeping this from him "for his own protection". The boy's finding out about his impairment and his origin, however, lead into the supernatural events of the plot, involving the ghosts of children who lived in the orphanage in the adoptive mother's childhood, who eventually lead both son and mother to their deaths.

The villain of the film is a former care worker at the orphanage (with the highly ironic name "Benigna"), who turns out to have killed the other children whose ghosts haunt the orphanage, after they caused the death of her own facially disfigured son, Tomas. However, Tomas and the other children all seem to be working together as ghosts, with no sign of enmity or tension, which strikes me as something of a plot hole; I was expecting Tomas' ghost to be an antagonist because of a grudge against the other children. Of the other ghost children, one is stated to be blind, while another wears a leg brace, but their impairments are incidental to the plot. The disabled children for whom Rueda's character had intended to reopen the orphanage are only shown briefly (although it looks like actually disabled child actors were used for the parts, albeit probably more accurately described as "extras" than "actors"), and again not much is made of disability as a plot element here.

Overall, The Orphanage felt to me like a film which could have made much more of the themes of disability and institutional "care" which formed the backdrop to its plot than it did; I was expecting it to have a much stronger theme of the true horror inherent in a segregated and institutional setting itself (as well as more of a presence of the disabled children the protagonists were reopening it for). It's also a much less radical film in its treatment of gender roles than Planet Terror - it follows typical horror film conventions of "emotional" female characters being much more receptive to the supernatural than skeptical, "rational" male characters, of women's primary identity being as mothers protecting their children, and of the "caretaker" role (whether seen positively as nurturing or negatively as authoritarian oppression) as a primarily female one. (In this it can be contrasted with del Toro's earlier The Devil's Backbone, also set in an orphanage and featuring ghost children, in which it is an abusive male authority figure who is led to his death by the ghosts, who can be seen as (anti)heroic rather than antagonistic.)

Laura, the main protagonist of The Orphanage, in some ways parallels Dakota, the secondary protagonist of Planet Terror: both are mothers of sons of a similar age whose sons die in ironically tragic circumstances, both are temporarily physically impaired by the actions of an antagonist, and both have husbands or male partners who are oppressively scornful and dismissive towards them (albeit one portrayed as actually abusive, while the other is merely the standard supernatural film "disbeliever" or "skeptic" character). Both also have antagonistic counterparts (Benigna and Dr Block respectively) who personify the authoritarian paternalism of medical and social care that disabled people are subjected to. However, Laura herself, as a (presumably) fairly rich and privileged international adopter of a disabled child, who plans to open what is still essentially an institution for other disabled children, is open to criticism as the same sort of "do-gooding" paternalist. (It's a subtle but pleasing parallel that both Laura and Benigna separated their own disabled sons from the other children in the institution - also, Laura's own rise from orphaned/institutionalised origins to proprietor of the same institution could be seen as showing an assimilation process of oppressed people being socialised to imitate, and ultimately become, oppressors.)

Both Planet Terror and The Orphanage are visually stunning films, although they use extremely different visual styles. Both also have flawed plots, in which some events seem implausible even given the supernatural settings and certain elements do not (IMO) entirely satisfactorily hold together. Both, however, are recommended for critical viewing, although of the 2 Planet Terror is the one that i think is the most radical and positive in the way it presents disabled and otherwise oppressed characters.

I find it interesting that this is somewhat the opposite of how the subgenres of horror film that The Orphanage and Planet Terror are representative of generally tend to get percieved - the subtler, more psychological "arthouse horror" of The Orphanage being generally praised by more intellectual critics and seen as more "alternative" and for the more "aware" or "discerning" viewer, whereas the gory, effects-heavy "action horror" of Planet Terror (and the older "schlock" or "exploitation" films that it draws on for inspiration) tends to be seen as the sexist, anti-intellectual domain of macho adolescent boys, and as using minority stereotypes in crudely exploitative ways. However, here it's Rodriguez's "exploitation" horror (with its roots in pulp sci-fi magazines, circus freakshows and the like) which is ultimately more subversive and minority-positive than Bayona's "intellectual" work. (It's worth noticing that the disability arts movement has a long tradition of reclaiming and subverting exploitative "freakshow" imagery, with Tod Browning's classic film Freaks as an arguable antecedent).

What i would really love to see is a horror film with disabled protagonists played by disabled actors, with the themes of institutions and their lingering, haunting legacy as used (if not explored as deeply as they could have been) in The Orphanage, but with the style and attitude of Planet Terror. (I'm sure the likes of Mat Fraser and Nabil Shaban would be interested in such a project, if there was a director and finance to get it off the ground. While doing dream casting, i'd love to have Sarah Gordy playing a protagonist and Liz Crow playing some role in either producing or directing...) Now that would be a true successor to Freaks. However, in the absence of such an imaginary film (and the extreme unlikeliness of anything like it ever happening), Planet Terror and (to a slightly lesser extent) The Orphanage are both above average for "mainstream" cinema, and worth watching for anyone with an interest in either "genre" films or in disability and its intersections with other oppressive systems...

What would/could personal assistance look like in a mutual aid society?

2009-05-20T22:10:00.001+01:00

I've been meaning to blog about this for a long time, but have been prompted into finally posting by the discussion involving Anarchafemme, Foibey and myself in the comment thread on this post at Anarchafemme's blog, which was getting quite a considerable distance from the original post topic, so to avoid derailing it any further, i thought i'd better at least make a start on the topic here. There's no way that this post is ever going to cover all of my thoughts here, but it's a start...

Background first: for almost a year now, i have been working as a PA (Personal Assistant) for a fellow disability rights activist with a physical impairment. There have been, and still are, various ongoing tensions within that working relationship, but those aren't (directly) the subject of this post, and it's still, by a long, long way, the best job (in terms of waged work) that i've ever had. In many ways, it's arguably the best possible job for an anti-capitalist - it doesn't benefit any oppressive corporation or state agency, it's effectively using money from the welfare state to sustain activism, and it (genuinely and directly, unlike so many other jobs in government departments or charities/NGOs that claim to do so) empowers and liberates oppressed people. It's also a job which does not require any particular educational or professional qualifications, and in which having experienced barriers to more "mainstream" employment is arguably actually an advantage (because members of oppressed/discriminated-against groups who tend to have such barriers are more likely to get the point that this job is about enabling and liberating, not controlling, patronising or "care-taking").

The paradigm of disabled people directly employing PAs, however, while being a major part of the Independent Living movement (a movement that i would argue is possibly the only minority liberation movement that is inherently both libertarian and socialist - but that's something i'll have to save for a future post) is one that is rooted in hierarchical and capitalist social structures of wage-work and the employer/employee relationship. Is there a contradiction here?

The employer/employee model of personal assistance comes from the concept developed by the disabled people's movement of "independent living" as not meaning "doing everything for oneself", but "having choice and control over one's own life" - a concept which, IMO, is the only concept of "independent living" which makes any sense in any modern context, as no human being in any present-day society (and possibly at any time in human history) is entirely self-reliant, but we are all interdependent on one another. This means, then, that being physically (or otherwise) impaired does not in itself prevent a person from being "independent", but it is social structures and policies that prevent people with personal assistance needs from having control over when and how they recieve that assistance that do prevent them from having "independence" in the choice-and-control sense (for one of many excellent articles on that topic, see "What's So Great About Independence?" by Sally French here).

This is libertarian in that it puts the freedom of choice of the disabled person over what happens to their own body and in their own life as the highest priority, and socialist in that paying for it is seen as the whole of society's, not just the individual's, responsibility - but where does it fit in with the anarchist/anti-capitalist/libertarian-socialist critique of the whole concept of wage work and employer/employee relationships?

Generally speaking, the anarchist vision of a world based on equality and mutual aid is one without any hierarchical relationships between (adult, at least) human beings - but the relationship between a disabled employer and hir PA is inherently hierarchical, and it's hard to see how it could not be without compromising the disabled person's autonomy. For anarcho-communists (which i would loosely speaking consider myself... although some anarcho-communists might disagree, and i generally prefer "anarchist without adjectives") at least, Utopia also doesn't have such a thing as money (as all production of goods is for need rather than for profit or exchange-value, and everything is shared freely) - but this also raises issues in relation to PA work, because of the issue of motivation...

In a "free" or "autonomous" society, in most anarchist visions, the motivation for any kind of work is either that the person doing the work enjoys doing it, or that the work needs to be done - in contrast to the "heteronomous" work that dominates existing capitalist society - work that is done not out of either need or desire to do the work itself, but because of a secondary motivation, namely the payment for doing that work - thus, people work in factories producing goods that they neither consume nor want to consume, or in administrative jobs that would have no purpose at all in a free society, because they need the money, leading to alienation (which is not seen exactly the same way in an anarchist as in a Marxist critique of capitalism... but, for now, close enough).

In PA work, however, the heteronomous nature of the work is arguably a good thing, because the fact that PAs' motivation for working is financial need creates a relationship that is co-dependent rather than one-way dependent - the PA needs hir job for the income as much as the disabled person needs the PA to get hir embodied needs met. This, however, only works in a capitalist wage-work system - in a moneyless anarcho-communist society (such as Anarres in Ursula le Guin's The Disposessed), where the motive for work is its necessity of the work itself rather than financial gain, I think there would be a significant risk of the PA/employer dynamic that currently liberates disabled people by giving them choice and control would be lost - it would be easy to fall back into a patronising "do-gooder" dynamic, where only the disabled person needs the personal assistance, meaning that the PA would be acting purely altruistically or as a "favour" to the disabled person. For many disabled people, that would be unacceptably like the paternalistic charity model, with disabled people expected to be the passive and grateful recipients of altruistically given "care", rather than in charge of their own assistance, which, in the currently existing model of PA work, their position of authority and financial power as employers allows them to be.

It could be hoped that in an anarchist society, with an explicit ideological commitment to opposing all forms of "power-over", the power of providers of assistance over dependent disabled people would be recognised as such and a paradigm based on rights and solidarity could be created to try to overcome that - but it still makes me feel slightly uneasy, because i strongly suspect it's inherent in human nature for those providing necessary assistance to others to feel that they should get some sort of "reward" in return, whether money or the praiseworthy status of "do-gooder" and the gratitude and subservience on the part of the recipient that comes with it... and also, even in anarchist circles, i have known too many people who have accepted paternalistic attitudes to disabled people all too easily (including several "anarchists" who have worked as "carers" in institutions, apparently without having the slightest idea of their jobs as being those of oppressors).

(This is, to an extent, also about intersectionality, and the fact that the disability rights movement has, at least in the UK, existed fairly separately from other new social movements and wider critiques of the statist/capitalist system, while the wider anarchist/anti-* activist movements have almost entirely failed to address disability issues...)

This post is not so much laying out any answers as asking questions and inviting debate - so i'd be particularly interested in replies from anyone who has any ideas about this (especially, in fact, from PA users). Does a model of personal assistance that is liberatory for disabled people only work within a capitalist wage-work system (where work is defined as "heteronomous production of exchange-values", as Andre Gorz says in Farewell to the Working Class), or can it transcend that system? Can disabled people with personal assistance needs be assisted effectively without depriving someone (either the disabled person or the PA) of autonomy? (Or should the employer/employee relationship between disabled person and PA be seen as "depriving" the PA of autonomy? Perhaps it could instead be seen as a form of consensual power exchange, similar to that found in some BDSM sexual relationships?) Is there a "3rd way" possible here, that is neither paternalist nor capitalist?

If we are to have a fully "joined-up" anti-oppression politics, these questions need to be addressed, regardless of whether they can be decisively answered. Anyone up for tackling them?

Biodiversity in the City #2: Dove

2009-05-14T02:45:00.006+01:00

I had intended to do a "proper" post today, but ended up expending most of my writing spoons for the day on other things (emails to a few friends, partly inspired by cripchick's Habit Forming Love posts) - but wanted to post something, so thought "hey, another animal picture post will do"...

As with the last one, this is an unusually-coloured bird; this time, a Collared Dove.

I took these photos some time last summer, with my old camera, so they're not particularly great quality, but not absolutely terrible either. Collared Doves are pretty common around Birmingham, but when i saw this pair, i instantly thought "that one looks an odd colour"...

The dove on the right is the "normal" colour for a Collared Dove; the one on the left, however, is considerably lighter, almost white. It isn't an albino, as can be seen in the next photo, in which it clearly has the dark collar which gives the species its name (an albino would be uniformly white all over), so i guess it must be some sort of leucistic. (Random thought: would the paleness of European humans, particularly blonde and blue-eyed ones, be considered to be leucism relative to the "average" pigmentation of the human species worldwide?)

I also considered the possibility of it being a hybrid between a Collared Dove and a feral pigeon, but a bit of searching found a photo of a hybrid between a domestic pigeon and a Ring-necked Dove (which is almost identical to the Collared Dove) here (about 3/4 of the way down), which doesn't look anything like it, so i think this bird is a "pure" Collared Dove, just a mutant one with an odd colour.

The Collared Dove has an interesting history, in that it's one of the very few birds to have naturally expanded its range (rather than being introduced by humans) across a continent. It was unknown in Britain before 1953, being regarded as native to Asia and just reaching into the easternmost parts of Europe, but for reasons unknown started spreading westwards, and is now a common and familiar British bird. A white dove traditionally symbolises peace; i think this bird is a fitting symbol of a multicultural city with a long history of immigration and people living in it from all over the world, including particularly large communities from several of the countries where this species of bird also originated from... Biodiversity in the city is both human and nonhuman, and they (sometimes metaphorically, sometimes literally) feed one another.

Can You Tell This Child Is Autistic?

2009-05-08T12:50:00.007+01:00

(Yes, i know i said in my last post that i was aiming to write something every day in May, and it's now the 8th and i haven't. My internet went down on Sunday night, and i didn't get it back until yesterday. I've also written a couple of things that weren't public blog posts. Anyway, this is the post that i had *intended* to do on Sunday night, before my mysterious (but luckily easily fixable) cable fault...)

My parents recently gave me a memory card for my digital camera (among other things) for my birthday. On the card were various sets of old photos that my dad had either taken with his camera, or scanned in from old pre-digital photos, one of which was a set of photos of me and my brother as children. I'm absolutely terrible at guessing children's ages, but i would guess that in these photos i look about 10 and my brother about 3, which dates them at round about 1992...

The thing that most strikes me about these photos is that, even if it wasn't me (and i'm not sure if i look at all recognisable as the same person as me now at a long-haired and bearded 27), i would be instantly sure from looking at them that the older boy was autistic. I'm not sure exactly what would bring me to this conclusion, but i think it's some combination of posture, facial expressions, and just possibly an actually physical "look" that i've noticed many (although by no means all) autistic people i've met have (something i'll probably get round to writing about in more detail reasonably soon).

(Yes, this is the sort of sitting position that i felt comfortable in as a kid. I also liked, up until i was at least 13 or so, to sit with my legs crossed in a very stereotypically "feminine" way, right thigh over left thigh or vice versa. I only stopped when i was taught in no uncertain terms at secondary school - when i was just starting to try to have friends and be accepted by other children - that it was unacceptable for a boy to do. It utterly puzzled me though, and still does really, what was/is gendered about that (well, i know physical anatomy, but still, sex != gender)...)

I also think this is a very "autistic" hand position... though i'm not quite sure why...

This was another typical pose for me. Although it was before i started having weird things going on with my joints, i wonder if the positioning of my right foot there does have something to do with my right ankle being one of the joints i get the most weird flexion and "clicking" with now.

(If anyone's wondering where the photos were taken... i think it was most likely Sherwood Forest, hence the Robin Hood caps. However, it also could have been the New Forest in Hampshire, as we stayed at my aunt's house there for a couple of weeks every summer for most of my childhood.)

Here's one of me sitting in a tree:

While i'm not sure there's anything particularly "autistic-looking" about me in that photo, it does show something of the expression i very, very often had (and occasionally still have) in photos, which got/gets misinterpreted as "fear"; in a couple of my school class photographs, i have been told that i stand out immediately from the (identically dressed) group of children because, to NT eyes, i look utterly terrified. For a long time i really hated photos of myself because they seemed to show, blatantly and undeniably, the "wrongness" of my facial expressions, which i was constantly trying to convince myself i was going to "overcome", while of course not really knowing what it consisted of either - it's only in the last few years that i've really got over this and started to find photos of me tolerable to look at.

This one was taken in my back garden at my parents' house, and i think makes me look particularly autistic:

The facial expression, the pose and the very stereotypical "acting out" of an "appropriate" emotion towards a fictional enemy (as i recall, the figure on the chalkboard was a henchman of the Sheriff of Nottingham who we had been practising firing our bows and arrows at - probably a few days after going to Sherwood Forest) - and indeed the fantasy play based on a recently visited location - all strike me as *very* typical of the autistic spectrum.

Also note what i was wearing - as a child, i had major sensory issues with clothing, and only found a very small range of clothes comfortable enough to be tolerable wearing. I don't think i ever stripped myself naked in public (i was too sensitive to cold for that), but i remember ripping my school uniform off as soon as i got through the door, finding it *very* difficult to cope with wearing a tie (something i still think is one of the most utterly pointless things ever invented, and its mandatory presence as "professional wear" in the majority of corporate offices is one of those things that just makes me go "WTF is this world?"). Outside school, the only trousers i would wear were these "tracksuit bottoms" - which were made of a very soft material and had elastic or a drawstring instead of a zip fly, meaning they had to be pulled all the way down to use the toilet (another thing that, therefore, had gendered stigma as well as disability stigma in schoolboy culture). Again, once in secondary school, i tried to wear jeans after finding out that wearing tracksuit trousers was "not normal", but found them horribly uncomfortable (although some of my sensory issues lessened a bit around that age).

(I finally threw away my last pair of jeans a couple of years ago, after realising that i had owned them for about 8 years and hadn't worn them in about 5, after discovering a perfect solution in the form of the "combat" style trousers i now wear pretty much exclusively, which are comfortable, practical (i now couldn't live without the side pockets, giving me 4 pockets per pair of trousers, as opposed to the 2 of most jeans and "formal" trousers) and, as far as i can tell, lacking in particular stigma.)

The stigma attached to those trousers is something i should perhaps explain, as it might be a strictly UK thing, i'm not sure. (It also might have been stronger in the 90s than now, again i'm not sure.) If a child over about 8 was seen wearing those sort of trousers, then they either had "something wrong with them", ie they were "retarded" or "mental" or "not all there", or indeed just "weird", which was a bit of a cover-all, or else their parents were too poor to afford to buy them "proper" trousers, which in the intensely disablist and classist (although not at all aware of either of those terms) world of suburban children in the 80s and 90s (and probably now, although i don't have direct observations) amounted to much the same thing - an acceptable target of taunting and bullying. An adult wearing that sort of thing would definitely be seen as having "something wrong with them", to the extent that they were seen almost as a symbolic uniform of learning disability (with attendant stereotypes about institutional living, incapability of achieving "independence", etc) - someone who wore them either did not choose their own clothes, or was so oblivious to norms of clothing choice that they had to be "not all there".

(There is a whole load of other stuff i could spin off that, about clothing, disability, stigma and more, but i don't have time right now and it probably deserves a post of its own...)

Anyway, i've strayed from my main point. As a child, as far as i know, I did not have any diagnosis of an autism spectrum disorder (and i was sent to several different child psychologists, and the subject of a huge amount of (mostly negative) "concern" about me, despite my very high academic achievements, for my complete lack of social integration with other children throughout my primary school years) - yet, looking back, it seems almost impossible that anyone, with even the level of familiarity with autism that most people in the general population now have simply through the mainstream media, could have observed me for more than a couple of minutes without identifying me as autistic. I had practically every stereotypical characteristic of autistic children, including many that tend to be regarded as unfair and erroneous stereotypes (which always makes me feel a bit awkward when they are discussed as such, because i want to say "er, as a child i actually was that") - a total lack of interest in or emotion about other "real" human beings (while having incredibly intense attachments to fictional characters), dozens of sensory intolerances, including refusal to eat the vast majority of foods and finiding nearly all human touch intolerable, meltdowns involving uncontrollable crying and attacking other children, selective mutism, obsessive memorising of facts and figures about narrow topics of interest, hand-flapping (i recall my mother telling me at about 8 "don't do that with your hands, it makes you look like a spastic"), pronoun confusion - you name it, i had it, basically... yet, AFAIK, autism was not even mentioned in reference to me throughout my childhood.

Why this was, i have utterly no idea. I have often wondered how much different my life would be if i had been diagnosed as autistic in childhood - on the one hand, i wouldn't have spent so long living in denial, confusion, self-hatred and paranoia, thinking "what the fuck is wrong with me, and why won't anyone explain to me all these things that everyone else seems to understand perfectly naturally, and yet somehow i don't?", i possibly wouldn't have alienated so many people who i tried and failed to be friends with and ended up offending or turning against me for reasons i couldn't comprehend at all, i probably wouldn't have got sucked into some of the profoundly unpleasant ideologies i spent much of my teenage years in, and things within my family very probably wouldn't have been as fucked up as they were (in ways that were not exactly anyone's fault, although i spent a long time blaming my parents and a longer time blaming myself for much of it) - but then, if i had been diagnosed as a child, would the educational ambitions my parents and teachers had for me have been "downsized"? Would i have ended up in some sort of "special" school instead of the selective-by-educational-ability grammar school i did end up in, and would i have had the ambition to go to university? Would i be a part of intellectual community now? More generally, would i have had the sustaining belief that i could, or at least had the right to, be as independent and achieve as much as any neurotypical person, or would i have "accepted" my inability to know what was best for myself? Would i have been better off with a better knowledge of my own limits, or was my lack of understanding of those limits at certain crucial stages of my life necessary? I strongly suspect, therefore, that while some aspects of my life could well have been much better with an early diagnosis, other aspects of my life could well have been much worse, and, of course, it would be impossible to ever fully know.

So, i'm interested in what other people on the spectrum, or people with friends or family members on the spectrum, think of these photographs - when you look at them, do you instantly see an autistic person? If someone whose child you hadn't met showed you those photos, would you guess that the child was autistic? And, more generally, do you think autistic people can reliably identify other autistic people by looking at them? (As an adult, i have been told both that my "Aspie mannerisms" were obvious before i said anything about my diagnosis, and that me saying i had an AS diagnosis was surprising because it "really wasn't obvious". I actually think i have become somewhat more obvious in the last few years, since discovering autistic community, because many of the semi-conscious ways of repressing my natural mannerisms and imitating neurotypical ways of moving, facial expressions, etc have "worn off".) And did anyone else who was diagnosed as an adult have similar experiences of finding it hard to believe they were never diagnosed as a child, because it was really obvious?

I need to write some stuff about diagnosis and labelling more generally, but i think that's an interesting discussion starting point. (Also, credit is, i think, deserved to AnneC of Existence is Wonderful for partially inspiring this with a post based around photos of and by her at a similar age...)

I won't be posting tomorrow or Saturday because i'm off to London for a conference and a friend's birthday. But i will hopefully have time to post daily-ish for the next week or so from Sunday...

Disability Terminology: too much confusion, so much frustration (for BADD 2009)

2009-05-01T23:15:00.005+01:00

This was meant to be a post for Blogging Against Disablism Day 2009, but as it will almost certainly be after midnight by the time it's posted, it might not (officially) be. Also, as quite a few other unwanted and stressful things have happened to me today, it might be a bit disjointed, as i've expended quite a few more communication spoons today than i was hoping to have to... so i may try to revise it a bit afterwards.

The topic of this post was prompted by a conversation the other night: the language of disability and disability oppression, and how frustrating the contradictory and overlapping usages can get, especially when the international status of English as a language is involved. "Disablism" itself is a case in point...

"Disablism" is primarily a UK usage (although i think i have seen some people from the US using it). The corresponding word used most of the time in the US is "ableism" - as, for example, in this recent post by anarchafemme. (I'm not sure about what's common usage in other English-speaking countries, but searching Canadian Elizabeth's blog gets results for "disablism" but none for "ableism", whereas searching Australian hexy's blog gets the opposite... so, Canada as UK, Australia as US?) This is somewhat confusing, especially for the literally minded, as those two words look like they should mean the exact opposite of each other - but are used to mean (roughly) the same thing.

Last year for BADD, Lisy Babe explained her reasons for preferring "disablism" over "ableism" - which at first i fully agreed with, but then i read this comment and found the argument in the opposite direction there equally convincing... so, bleh. I think i will stick with "disablism" simply because it's the generally accepted usage in both academic Disability Studies and disabled activist circles here in the UK, rather than out of any strong ideological preference one way or the other.

I have much stronger preferences about the "correct" usage of the term "disability" itself. In fact, i think misleading or ambiguous usage of the terms "disability" and "disabled" is one of the biggest barriers to a wider cultural understanding of disability issues and to the recognition of disabled people's oppression (whichever term you use for it) as a "valid" oppression, real and analogous to racism, sexism, homophobia, transphobia and the rest of them. (Although, of course, as i've said before, all those oppressions also routinely get not treated as "real" or "valid", and "last acceptable prejudice" rhetoric is, IMO, not helpful.)

(Another aside here - there really isn't consistent usage in English for naming oppression. We have words ending in "-ism", like racism and sexism, which is a widely recognised enough construction that more recent coinages like "sizeism" and "ageism" are easy to understand as analogues, and then we have words ending in "-phobia", like transphobia, homophobia and xenophobia (which overlaps with, but isn't quite identical in meaning to, racism), which is also well-known enough that analogous coinages like alterophobia are reasonably easily understood - this despite the fact that most other words ending in "-phobia" describe irrational fears or aversions that have nothing to do with oppression or prejudice, and of course there are dozens of different types of constructions with the suffix "-ism", ranging from political ideologies (anarchism, socialism, libertarianism, nationalism, etc) to medical-originated words for impairments or physical conditions (autism, albinism, dwarfism, etc)... and then there are debates about whether the better word for prejudice against women is "sexism" or "misogyny" (which introduces a third "mis-" construct, tho the only words i can think of right now using it are "misogyny" and its counterpart "misandry"), etc. So arguments for using either "ableism" or "disablism" based on consistency don't work either way. It would be an interesting thought experiment as to whether understanding of prejudice and oppression in the English-speaking world would be better if the terms for it were all analogous and consistent...)

For a start, there's the often-misunderstood distinction between "disability" and "impairment". In UK activist usage - deriving primarily from the social model of disability as developed by socialist disability theorists such as Colin Barnes and Mike Oliver in the 1980s - "impairment" is the word used to describe a difference in body or brain resulting in it functioning differently from a "normal" person's (eg. autism, cerebral palsy, a spinal injury, bipolar depression, a missing eye, a missing leg, etc), whereas "disability" is used to mean the social disadvantage resulting from society's failure to accommodate that difference (eg, "not being able" to access public transport due to lack of wheelchair access, not having access to books because they are not published in audio as well as print editions, being "unable" to communicate one's needs effectively due to social assumptions about verbal and nonverbal communication, etc). In practice, however, because the social model isn't widely understood (or even heard of, even sometimes among disabled people), the word "disability" very often gets used to mean "impairment" - someone asking of a person "what's your/hir disability?", for example (and expecting an answer of, say, "muscular dystrophy" or "spina bifida").

To make things worse, internationally the usages conflict and contradict one another - for instance, i've often seen it stated that the "standard" US usage is to use "disability" for what we in the UK would use "impairment", and "handicap" for what we would use "disability". From what i've observed online, the usage in the US disability rights movement is actually rather mixed - some use the "disability/handicap" terminology, but a possibly increasing number (especially, i think, of younger activists) use the "impairment/disability" terminology. I have seen attempts to synthesize the conflicting usages by trying to develop a 3-layered terminology, in which "imapirment", "disability" and "handicap" all have distinct and defined meanings - however, i'm not sure precisely what those distinctions are where such terminology is used.

(Edit: i found here the World Health Organisation's definitions:

'An impairment is any loss or abnormality of psychological, physiological or anatomical structure or function; a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being; a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that prevents the fulfilment of a role that is considered normal (depending on age, sex and social and cultural factors) for that individual'. - so, for me, both what the WHO calls "impairment" and what it calls "disability" would fall under "impairment".

The extent of the confusion is made even clearer by the fact that the "About us" page of that website uses both the phrases "handicapped people" and "people with disabilities" - to describe the same people... i'm not even going to get into the "people with" debate here...)

Something i find both politically important, and often useful in explaining social model usage, is that the word "disabled" is not, linguistically, an adjective, but instead the past tense of a verb - "to disable". Therefore, in phrases like "disabled people", the word "disabled" does not refer to an inherent characteristic of a person (as an adjective relating to impairment, such as "autistic people" or "blind people", would), but implies that we are people who have been disabled - it describes not us but what society has done to us. Thus, it's analogous not to, say, "black people" or "female people", but to "people oppressed by racism" or "people oppressed by sexism". In fact, because of this, some people have argued that "disablism" is actually a redundant term for describing oppression, and that oppression should simply be termed "disability" - or, perhaps more accurately, and as used by Mike Oliver in his most famous book, "disablement".

(It's also interesting that, in early-modern works of political theory that i read in the first year of my politics degree, by the likes of Jeremy Bentham and John Stuart Mill, phrases like "the disabilities of women" were common, referring to legal and social disadvantages, which could be seen as using the term "disability" in a completely social-model sense, centuries before the fact and without even any reference to impairment...)

Then comes the categorising of impairments, and terms get even more confusing. Generally speaking, "visual impairment" and "hearing impairment" are pretty universally accepted terms - i don't think i've ever heard anyone use the phrase "visual disability" or "hearing disability". However, "physical impairment" and "physical disability" both seem to be used pretty commonly and almost interchangeably (although use of the former rather than the latter may, tho it doesn't always, indicate a slightly higher level of understanding of the social model and the difference between impairment and disability - it's still not uncommon, even in disability activist circles, for people to say "ze has a physical disability" or "hir disability has got worse", tho).

When we enter into the field of mental impairments (and even the umbrella phrase "mental impairments" is regarded as an unacceptable usage by some), it almost totally breaks down. The term "impairment" is almost never used in reference to mental health/illness - the only people i have heard use it in that context being people with mental health conditions who are/were involved in pan-impairment disability activism/disabled community, and more often than not had other impairments as well.

There is a huge and hideously complex debate around whether the term "learning disabilities" or "learning difficulties" is the more appropriate one, yet, strangely, i have practically never heard anyone seriously suggest the use of the term "learning impairment" - even though that would seem to me both to be much more consistent with the social model and to have the advantage of more obvious analogy with "visual impairment", "hearing impairment" and "physical impairment". None of the reasons i have seen given for the preferential usage of either term over the other have seemed convincing - a typical example is People First's reasons for using "difficulties" rather than "disabilities", which seems to me to be composed pretty much entirely of non sequiturs. ("Learning disabilities" and "learning difficulties" both also seem to be used almost exclusively in the plural, even when referring to a single person, which i don't really undertstand the reasons for.)

There also seems to be argument and disagreement over who is covered by the category of "learning disability" - sometimes, especially in the US, it seems to be used primarily to cover people with conditions such as dyslexia or dyspraxia (which in the UK are categorised as "specific learning disabilities, with seemingly an emphasis on the "specific" to avoid association with the more-stigmatised category of "learning disabled"), whereas the general assumed category in the UK is people who have "generalised" intellectual or cognitive impairment (if that even truly exists, and hasn't been shown, like IQ, to be a false category, or broken down into distinct and discrete syndromes or conditions - i mean the type of cognitive impairment that, for example, most people with Down's syndrome tend to have). "Cognitive impairment" and "intellectual impairment" are also ambiguously used phrases, and i still haven't really got a clue what "developmental delay" means - although i know that "pervasive developmental disorders" covers autism and related conditions, and "developmental disability" seems to be another primarily-US term with apparently about the same meaning as "learning difficulty" (as used by People First UK and those who follow their scheme of definitions).

Then there are the members of various impairment groups with their own identity politics who don't want to be identified with the term "disabled"; the 3 impairment groups i am most aware of this happening with are autistic people, deaf people and dyslexic people (although i am sure it happens in other groups as well - i'm aware of something parallel in the mental health system survivors' movement, for example). This often comes from a lack of understanding of the meaning of the term "disabled" in the social model of disability (or sometimes a grasp of the social model, but only with relevance to the disability experienced by one's own impairment group, and not by any others), but can also come from attempts to define one's own biodiversity as not impairment; proponents of deaf culture, for example, argue that they are not a group defined by impairment or disability, but a cultural and linguistic minority (which, it has to be said, many other people with hearing impairments or dual sensory impairments are strongly opposed to). Similarly, certain parts of the autistic rights movement insist that autism is not an impairment, but a "neurological difference" (which can have the effect of alienating autistic people who do experience aspects of their autism as impairing - i've somewhat covered this before, but need to cover it in more detail). I'm aware of several universities in the UK who have student groups with titles like "Disabled and Dyslexic Students' Forum" or services for "students with disabilities or dyslexia", because so many dyslexic people do not identify as "disabled", or object to dyslexia being categorised as "a disability".

There is a part of me that feels that the terminology we use to refer to concepts doesn't really matter, as long as we understand the concepts themselves and are able to work together despite linguistic differences on achieving the same goals in our activism; this part of me is reinforced by my knowledge that all language is ultimately arbitrary anyway (trace etymologies back as far as you like, and still eventually, except perhaps in cases of onomatopoeia, you'll end up with a word with no inherent link between its sound or the shape of its letters and the thing it describes). There is, however, another part of me that feels that, arbitrary in origin as it may be, the use of the "right" language is important, both because language shapes meaning, and because, if we don't have the same understanding of language, then arguably we can't have the same goals in terms of action, because we will percieve the same stated goals differently (and people who think they are working together on the same thing may end up actually working for very different aims, because their interpretations of the same conversation were different due to their different understandings of the meaning of crucial words). Alliances have both been well-intentionedly but naively formed between groups with opposite aims (eg. "user-led organisations" formed by people with very different definitions of who constitutes a "service user") and have been broken between groups who really ought to be working together if they want to get anywhere because of this.

I don't have any answers here, or any suggestions about which terminology i think people should use (although i do have terminology that i prefer to use, and i think in some cases there's only one viable alternative to ensure mutual understanding, eg. in the academic world of Disability Studies where the works of Barnes, Oliver, et al are foundational texts). Just like with the gendered pronoun issue, any particular usage i could propose almost certainly wouldn't catch on anyway. I do think, tho, that even though "playing with words" is often seen as something trivial and detracting from the true struggle, and "semantics" is used as a derogatory term to invalidate arguments, if we are to be successful in fighting against disablism then we have to be clear among ourselves, and able to easily explain to others, what it means...

Recent Links of Awesome #4, and a self-set challenge

2009-04-29T23:19:00.004+01:00

Another link roundup, as i haven't posted in a while...

Breaking news, via FRIDA, cripchick and various Facebook friends* - at least 91 disabled activists from ADAPT (the US's equivalent organisation to DAN) were arrested yesterday outside the White House, and another 99 today on Capitol Hill, protesting against the institutionalisation of disabled people in nursing homes and for Medicaid (the US's "safety net" healthcare system for poor and disabled people) to cover the costs of employing personal assistants to live independently in the community as well as those of "care" in "care homes". This is incredibly inspiring (in the true, good way, not the bullshit "inspirational" way!) - especially from a UK perspective, the sheer numbers of disabled people getting out on the streets and taking organised, high-profile, risky and radical action are amazing.

We really need a movement like this in the UK... oh well, we're getting there... ;)

Youtube video of yesterday's (Monday's) action here...

*Yes, i'm on there. I only add people i know in real life. If you're reading this, and you're someone i know in real life, and you're on Facebook but not on my friends list already (which, tbh, i think is pretty unlikely, but you never know), then feel free to add me (er, i'm presuming that if you are all those things, you know my real name)...

I haven't blogged about much pure political theory (anarchism, socialism, libertarianism...) stuff recently because i've not had quite the right kind of verbal spoons for that very abstract type of thought, but i have been attentively reading stuff on the subject, and particularly liked (even if not felt able to coherently respond to) several recent posts by Rad Geek (aka Charles Johnson):

"Hoverbikes", on the false dichotomy between anarchist localism/decentralism and creative use of technology;

"Fight the powers that be", on "the reasons why a thick conception of libertarianism — or just a realistic assessment of the human predicament — recommends a left-libertarian strategy of connecting radical libertarianism with a thoroughgoing form of psychological, institutional, and cultural anti-authoritarianism (as a general thing, and also when it comes to specific forms and markers of privilege and subordination, like bossism, patriarchy, heterosexism, white supremacy, et al.)";

and this open thread on "localism, decentralism, anarchism, thick conceptions of libertarianism, and the U.S. Constitution", which is incredibly long (i haven't even read to the end), but an awesomely detailed and high-level discussion, containing far too many spinning and whirling ideas to hold coherently in my brain at any one time.

An awesome new blogger i have just discovered is Anarchafemme (who i actually thought, from hir* description of hirself as "a chubbers, trans/genderqueer femme with disabilities, anarcho-syndicalist, vegan, polyamorous slut" might have been a real life friend of mine, until i saw hir location as being in the US).

Particularly awesome and powerful posts from hir blog "Memoirs of a Genderqueer Femme Anarchist":

Musing on Smashing the Gender Binary

Ownership of Bodies

I Hate To Say "I Told You So"... (the best takedown of the hype surrounding Obama that i've seen so far)

Ablism In Radical Spaces (which is a topic i really need to blog on... and, yeah, i can't link without saying i strongly prefer the usage "disablism" over "ablism", but, that aside, i agree with everything there, and of course language and usage is a huge UK/US thing...)

*Anarchafemme, if you're reading, please correct me if i've used the wrong pronouns - i think i saw you saying somewhere that you preferred gender-neutral pronouns, but now can't find where you said that, so apologies if i mistook you for someone else...

And lastly, for those who are into webcomics, Digger by Ursula Vernon is one i've discovered recently which i've been finding pretty damn awesome (and i don't usually like either black-and-white comics or anthropomorphic animals, especially when mixed with humans... but, nonetheless, Digger is awesome).

Also, i've been pretty pissed off with myself for not writing anywhere near as much as i've wanted to recently, so i've (somewhat tentatively) decided to set myself a challenge in May to try to overcome that. I'm not doing an official NaBloPoMo, because a) i'm almost certain that there are going to be at least a few days when i don't manage to write anything, due to, well, all the other things going on in my life, and b) i know that at least a few of the things i want to write won't be blog posts, but my aim is to write something significant every day in May. So expect more frequent (if perhaps consequently shorter) posts over the next month, and possibly longer if i pick up longer-term momentum - and wish me luck...

(And, yes, i really need to update my blogroll. And layout. I am going to get round to this at some point soon.)

Oppression Olympics... literally.

2009-04-15T00:43:00.004+01:00

ABFH posted recently about a Special Olympics poster campaign called "Spread The Word To End The Word". Her post concentrated mainly on the motives of the advertising agency, but here i want to address the poster campaign itself.

The aim of this advertising campaign is putatively to "make people stop and think about their hurtful and disparaging use of the word “retard.”" - however, i think there are several ways in which this advertising campaign is deeply flawed, and is, in fact, arguably offensive and oppressive to disabled people in itself.

The posters (which can be seen online here, here and here) are certainly striking and powerful - I do have, on one level, admiration for their boldness and shock value, and i think the point they are trying to make is, from a certain standpoint, a valid one - however, i think that standpoint is a naive and unexamined one. This gets me into complex knots of identity politics and standpoint theory of the sort that i always struggle to articulate, but i'm going to try, and hope i make some sense...

The first thing that struck me when i saw the posters was the open use of racist (primarily) and homophobic insults on them - in 2 of the 3 posters, without censorship of the racist and homophobic terms, and in the other one with those terms censored but "retard" uncensored. I very much doubt that the first 2 posters would even be allowed by the Advertising Standards Agency in the UK (and that's not to make the UK out to be less prejudiced than the US, or to say that the ASA isn't hypocritical or fucked up - they seemed to have no problem with this shit, for example) - the obliviousness of whoever made them to the effect that seeing them could have on members of the groups who were slurred uncensored on them (Chinese people, gay men, African-Americans and Jews, respectively) is breathtaking. The remaining poster, in removing the vowels from the racist and homophobic terms (while still leaving them obvious enough to have the same effect on members of the groups attacked by them - African-Americans, Latino/as, and gay men again) but not from "retard", is arguably even more offensive by falling hideously blatantly into the "last acceptable prejudice" trap.

The second thing that struck me was the visual imagery - which i concede has a powerful aesthetic that i like in purely visual terms. However, two things strike me about it - firstly, that the whole visual point hinges around the visually obvious facial appearance of people with Down's syndrome, thus equating all cognitive impairment with that one condition (which also spreads the false, but common, conception that cognitive impairment is something immediately and obviously "visible"); and secondly, how strongly the imagery draws on tropes of fear and horror, referencing horror cinema to portray (whether intentionally or not) disabled people as frightening and monstrous. (I'm not sure what horror film(s), if consciously any, the first poster references, but the second clearly references the "classic" film depictions of Frankenstein's monster to me, and the third J-Horror films such as The Ring). While i think there is an incredible amount of subversive power in disabled people reclaiming such imagery (some great short film examples from the UK disability arts movement here and here), this doesn't feel like that to me - it feels more like it is simply putting out the message "disabled people are scary and shocking".

(Also, i can't help wondering what effect seeing those adverts would have on people with cognitive impairments who, due to those impairments - for example, someone who is unable to interpret language non-literally - wouldn't "get" the intended nuances of shock value, but would still "get" all too well the use of hateful words and scary images - i can easily see some people, on first impression (which may be all they get) seeing these adverts simply as a socially-sanctioned, brutal disablist attack on themselves...)

As for the comparisons, well, this post by the ever-awesome Eli Clare - inspired by a previous Special Olympics advertising campaign - makes all the points i want to make far better than i ever could - i could quote the whole thing, but i'll just quote a couple of bits of it:

1) The violence has already been done. The damage won’t be rectified by a refusal to say the words. In our activism and analysis around hate language, we need to be vigilant and conscious about triggers and re-creating the power dynamics put in motion by hate language, but I’m not sure that euphemistic substitutions for hate language is a good stand-in for vigilance and consciousness. At the bottom of this part of my ambivalence is a sense that the “r-word” construction is designed largely to protect those of of us who have been battered by the word retard and by the institutional, material, and attitudinal realities that come with it. As one of those people bruised by the dismissiveness, hatred, and physical violence of retard, I don’t need protection; rather I need compassion, rage, allies, and an end to ableism.

In the light of this, there is a clear contradiction in the current Special Olympics campaign - their motive in trying to eradicate the word (and, it seems, only the word, not necessarily the ideology or systemic injustice behind it) is, consciously or not, "protection" - which is fundamentally patronising and paternalistic - yet the posters used for that have the exact opposite effect, precisely the kind of re-victimisation in Clare's second sentence.

2) The “r-word” construction mirrors the “n-word” construction, which precedes it. I don’t know from where the “n-word” construction originates nor what mix of opinions/feelings/thoughts Black people have about it. But whatever the origins, the mirroring of the two constructions communicates that retard and nigger function in the same ways as hate language and carry the same violence and that all the repulsion and outrage white people supposedly feel upon hearing the word nigger should also be felt in the same measure by non-disabled people upon hearing retard. Here again is analogy failing to do the deeper work of intersectionality. Certainly racist hate language and ableist hate language share much in common. (The ways the word monkey has been used against disabled people (both poc and white) and people of color (both disabled and non-disabled) highlight these commonalities.) But there is so much historical and present-day difference between the usage of retard and the usage of nigger and such a lack of real anti-racist work among white disability activists that the analogy reads to me like white people appropriating the political work of Black activists yet again. The analogy sidelines Black disabled people’s experience, and assumes that disabled people are white and Black people are non-disabled. And the question isn’t asked: how does the snarl of hate sound in the lives of disabled people of color?

Now, "appropriation" is generally an area of discussion i avoid, because i find it incredibly difficult to get my head round what constitutes "appropriation" and what does not; i don't know how far one can take an analogy before it becomes appropriative, or even if ultimately it's appropriative to draw analogies between different oppressions at all (and, if so, is appropriation even avoidable, considering that for any analysis of oppression whatsoever, there's going to be one oppressed group that "got there first" - and that's particularly relevant when talking about disability, because it's historically undeniable that disabled people's oppression was, in most cases, one of the last categories of oppression to be recognised as such). But Clare is absolutely right that this is all about the feelings of the privileged group of people - the feelings of the actual people directly oppressed by the term "retard" don't even seem to be taken into consideration.

But since when is the Special Olympics about justice for cognitively disabled people? For many years that organization has been one of the biggest creators of super crip images–that is “heroic” disabled people “inspiring” audiences with their “bravery”–and and have often fanned the flames of pity with its charity-model fundraising. Even the name Special Olympics sets up a charity-model context, rather than a social-justice-model context. I believe that an organization that frames disabled people as inspirational and/or objects of pity is also setting the stage for the unquestioned use of retard. If the Special Olympics is serious about its r-word campaign, it has a lot of internal work to do.

And, of course, here the patronising and paternalistic nature of the "protect the vulnerable disabled people from hate speech by eradicating words, even if not what lies behind them" campaign makes perfect sense, because the Special Olympics is a fundamentally patronising and paternalistic organisation.

I believe that there is an unexamined but deep-seated disablist ideology behind even the "non-special" Olympics, and in fact all competitive sport, but i don't have time to go into that here. However, in its relative (if not absolute) uncompetitiveness, and emphasis on "develop[ing] self-confidence, social skills and a sense of personal accomplishment", another level of patronising disablism is revealed - whether in the idea that cognitively disabled people "can't take" losing and thus need to be protected from it, or that they don't have a realistic chance of winning in a genuinely competitive environment. (It's also noteworthy that the Paralympics - which has the same unashamedly competitive outlook as the "normal" Olympics - does not allow "intellectually disabled" athletes to take part, whereas the Special Olympics is solely for those with cognitive/intellectual impairments, reinforcing divide-and-rule segregation by impairment and encouraging "we might be impaired in X, but that doesn't mean we're impaired in Y, like them" attitudes on both "sides"...)

I believe that comparing disabled people's oppression to other oppressed groups' oppression in order to make people realise that it is oppression does have its value and its place (see my comments to cripchick's posts here and here, for example) - but this is an example of spectacularly missing the point... an advertising campaign aimed at combating hate speech which, for many people - even arguably including the very group it's meant to oppose hate speech against - is hate speech. Pointing out oppression that most people are unaware of is shocking - arguably, if you aren't shocking people, you aren't doing it right. But doing it in ways that hurt the oppressed more than the privileged is not cool at all.

Best post on adult AS diagnosis ever?

2009-04-13T22:52:00.003+01:00

Via hexpletive, an utterly amazingly awesome post on adult AS diagnosis and neurodiversity and other anti-oppression activism by a blogger i wasn't previously aware of, feminist and fat acceptance activist Meowser (who i may have to add to my blogroll)...

I don't really know what else to say about the post except READ IT, really... except that, despite being a different sex and a couple of decades younger than Meowser, practically everything in that post is almost word-for-word true of me.

A few choice quotes:

"Asperger syndrome?" I said. "No, I don't think so. I like affection. I'm not a slave to routine. I'm SO not into straightening and tidying things. I don't care all that much about computers."

...

Couldn't catch or hold a ball to save my life? Check.

Had no idea when it was okay to bend the rules, even for something trivial like chewing gum in class, and when it wasn't, because I was always positive I'd be the one to get caught, try to swallow my gum, and puke it up in front of everyone? Check.

Had a bedroom that looked like Axl Rose and the Tasmanian Devil were roommates in it, except for a record collection that was always carefully organized not just in alphabetical order by artist, but arranged by dates of release when I had more than one album by the same artist? Check.

Was almost comically uncoordinated and dropped things and banged into shit and knocked over glasses full of liquid like a 1-year-old? Check, check, checkerooski.

...

I'd lost friend after friend. Job after job. Roommate after roommate. Lover after lover. Just lost them and lost them and lost them, in ugly ugly ugly ways, even though I tried so hard to be good. Once in a while, when they could bring themselves to, they'd tell me why I was losing them.

Lisa said you were staring into space for ten whole minutes and not doing any work. I'm going to have to write you up.

Didn't you see me look at you? Couldn't you tell you were annoying the crap out of me with all that blathering about your issues?

You call this clean? Did wolves teach you how to wash dishes?

The way you stare at me, it's just so weird, I can't take it.

Error after error for which I could never be forgiven, even after apologizing and apologizing and apologizing and busting my ass to do better. Once people decide to wash their hands of you, that you're just too odd to be worth the effort, that's pretty much it.

But mostly they wouldn't even tell me. I'd just be frozen out, without another word.

God, if only I had known, I could have told people, could have told myself. They and I would have had at least a few clues ahead of time about what to expect. I wouldn't have kept trying to fit where I didn't fit, do what I couldn't do, make it okay when it never would be, tell myself I could make it work, everybody else does, I have no excuse.

...

The "treatment" I was to undertake now, under Jane's tutelage, consisted of understanding that this was the brain I had, it was what it was, and learning how to explain myself to people when the situation called for it and stop expecting myself to function like a neurotypical (NT) person -- that is, someone not at all autistic. Because I'm not like them, and no amount of TRY HARDER HARDER HARDER was going to make me become like them. And of course, learn to appreciate the unique and special ways in which my mind did work, and understand that I was not a failure, that I had been discriminated against for this for decades and not only didn't I know it, but the people who instinctively recoiled from me didn't even know why they were doing it, for the most part.

... but, please do read the whole thing - it's long, but it's worth it...

(and there is stuff in there, especially towards the end when she talks about privilege, that is so me i'm not even sure i'm able to coherently talk about it - tho i want to, and perhaps at some point i will, tho i've tried to write about the same stuff many times and never even got close to putting it into words which i felt reflected my actual thoughts and feelings... blah. Maybe one day.)

Proper posts from me... soon, honest. Have been stupidly busy... and will be for the next week as well, as i'm going to this conference (primarily to run a DAN stall), but i really will start posting more frequently, as soon as i have a couple of days with time to blog in a row...

Biodiversity in the City #1: Crow

2009-04-06T23:40:00.004+01:00

I realised recently that i haven't a) posted any of my own photos recently, and b) haven't posted anywhere as near as many posts of my own photos overall as i intended to when i started this blog. So, as i got a new camera recently (well, at Christmas) which is quite a bit superior to my old one (10x zoom and 8 megapixels as opposed to 4 and 5 respectively), i thought i'd start a series of wildlife photo posts (it's also a bit of a respite from intellectually and emotionally heavy disability-identity-politics type posts)...

However, being me, i can't help linking things together, and i've noticed a synchronicity in my recent photo-taking walks of one of my perennial interests: animals that are visually unusual for their species (I blame all the Jack London and Herman Melville i read at a very early age... with a bit of awareness of my own atypicality mixed in there too) - hence my "Biodiversity in the City" posts will focus on that...

I've posted before on the crows in Birmingham that often have some white in their normally black plumage. With my new camera, i recently got some photos of one that were much clearer than the blurry photos i got with my old camera back in 2007 (it's also a different crow, as you can tell both from the different pattern of white feathers and it being on the other side of Birmingham to the other one):

OK, they are still a bit blurry. Much better at comparable distance than my old camera, tho...

(and my random Wiki-surfing has found an extinct subspecies of raven with a fascinating similarity to my observations of crows in Birmingham - the pattern of the type specimen is remarkably similar to my 2007 crow (although i know that one was a Carrion Crow). Could the conditions in a city cause a similar "genetic drift" phenomenon to those on a small island? All sorts of incredibly interesting thoughts about genetics, evolution and diversity there... damn, i wish my biology was less rusty... maybe some day i'll write the out-there fusion of biology, ecology and sociology that i have somewhere in the back of my mind about human and nonhuman biodiversity in urban environments...)

Anyway. Darren Naish and Loren Coleman probably also deserve inspiration credit for this. Coming up: diversity in pigeons, ducks, geese and coots...

Massachusetts... WTF???

2009-04-04T22:11:00.003+01:00

When i first read this, i thought it had to be an April Fool's joke (albeit a somewhat offensive one... but one that i would possibly have found funny) - but confirmation from several other sources (such as Body Impolitic and Trinity) has proved to me that it is in fact true:

Massachusetts State Representative Kathi-Anne Reinstein (I'm not totally up-to-date on US legislative stuff, but i'm presuming she is an elected member of the state (as opposed to federal) legislature) has proposed a state-level bill banning distribution of any naked images of any disabled person or any person over 60 - and which explicitly equates any such images with child pornography.

The implications of this are horrific - it implies that any person over 60 or any person with "a permanent or long-term physical or mental impairment that prevents or restricts the individual’s ability to provide for his or her own care or protection" is equivalent to a child in being inherently incapable of consenting to sex or to being photographed naked. This would even apply to disabled people or people over 60 distributing naked images of themselves.

Now, i have spoken to several USians who have assured me that this bill is almost certainly federally unconstitutional and therefore could never be passed (or, if it was, would be struck down by federal authority overriding state authority, or something like that... again, not very sure of US politics here. Yes, i did this stuff at uni. No, i don't remember it...) But the fact that it even got to the stage of being put before the legislature - and, apparently, with the approval of Massachussetts-based disability organisations - is horrific enough.

According to this report, the bill was prompted by a series of cases of nonconsensual sexual exploitation of disabled people, involving nonconsensual photography. However, these kinds of sexual abuse are already crimes, and criminalising consensual images will almost certainly have no effect on them. Equating all sexual images of disabled people with nonconsensual abuse removes all agency from disabled people, and fits right into the insidious (and all the more oppressive for its not being percieved by the general public as oppressive) paradigm of disabled people as inherently "vulnerable", and therefore in need of "protection" that overrides our own choices and wishes - one of the nastiest forms of paternalism. This proves that, in the minds of people in powerful positions like state legislators, disabled people are not fully adult, not fully human.

(This bill would make Sins Invalid illegal in Massachusetts, and much of the work of Mat Fraser, and so many more incredibly awesome, vital, powerful works of the disability arts and disability culture movements... not even to mention the many mainstream films which have featured naked scenes by actors over 60...)

This is why i am a supporter of the Consenting Adult Action Network - not because i am particularly "pro-porn" (in fact, i'm pretty much entirely indifferent to porn - although i can certainly aesthetically appreciate nude or erotic images of attractive people, watching other people actually doing sexual acts is something that i'm simply not at all interested in - if anything, the only effect it has on me is envy at my own lack of opportunity for such activity) - but because anti-porn laws not only restrict free speech, but (much more importantly for me) deny people agency over what they do with their own images and, ultimately, their own bodies. This is one of the most fundamental freedoms that all human beings have - and a law specifically denying it to disabled (and older) people is nothing more and nothing less than institutionalised discrimination and hatred.

(For how hatred of disabled people can differ superficially from hatred of other minorities in ways that can prevent it from being seen as the hatred it is, see this previous post on hate crime.)

For these reasons, it's no surprise at all to me that disabled people and disability activists are extremely prominent in the movement for sexual freedom and autonomy (both in online discourses - e.g. on blogs such as let them eat pro-sm feminist safe spaces and SexAbility - and in offline activism such as CAAN) - fighting against paternalism and for bodily autonomy and acceptance of all adult human beings as capable of being fully consenting agents is completely central to the disability rights movement.

(The Sexual Freedom Coalition is also IMO worth linking here...)

Disabled people are routinely denied any kind of sexual agency or recognition as sexual beings whatsoever (see Dave Hingsburger's blog for far too many examples). I'm not going to try to address the thorny question of whether sex (defined as involving sexual interaction with another person) is a "right", as i really have no idea how to answer the questions of whether something that requires the consent of someone else can be a right, or of whether it's possible for something to be a need but not a right - but sexual expression undoubtedly is a fundamental freedom, in the same way that any other kind of self-expression that doesn't harm others (and no, offence is not harm) is.

I'm glad that this law is unlikely to be passed, but, to my knowledge, if such a bill was to be proposed in the UK (which does not have a Constitution like that of the US to protect "free speech"), there could well be nothing stopping it from being passed here. (The Criminal Justice and Immigration Act 2008, which banned "extreme porn" in the UK, would very probably have been unconstitutional in the US on the same grounds as this Massachusetts bill.) This is our fight, whether or not we want to see it as such...

The reason i haven't been blogging much recently ;)

2009-04-01T01:00:00.006+01:00

(the difference from my usual writing style is due to the fact that i wrote this for Indymedia...)

Yesterday (Monday March 30th) the Disabled People's Direct Action Network (DAN) occupied the main entrance of Louisa Ryland House (Birmingham City Council's main housing and social services office) over the way that disabled people are treated by the council.

Around 20 activists, who had come from as far afield as London, Leeds and Manchester, marched from the city centre (pausing only for a photo opportunity outside the Council House) at 1pm, chanting slogans such as "What do we want? Freedom! When do we want it? Now!" and "I'd rather go to jail than die in a nursing home". Despite the fact that an article about the action had already appeared in that morning's Birmingham Mail, Louisa Ryland House were totally unprepared for the invasion, with not even security guards initially present when DAN entered, chanting "Business as usual - ain't gonna happen!"

We occupied the lobby and blockaded the entrance with 2 wheelchairs chained together (with banners and people handing out leaflets to both council workers and passers-by outside in the street) for about 2 hours before any police turned up - initially it was a pair of "Community Support Officers" who essentially said they agreed with us and walked away, then about half an hour later the actual West Midlands Police came, but were very clearly totally unprepared to arrest a group of disabled people, repeatedly warning us that we were breaking the law (er, we knew that) and that if we stayed we would be arrested... however, they didn't seem to want to get round to it...

(One officer did tell us that it would be "zero tolerance" if we did it again... not quite sure if that's believable! Also amusing was the guy with a huge pair of bolt-cutters who BCC security called in, who essentially took one look at the small and flimsy-looking yet effective chain and left proclaiming it not worth calling him out for...)

At around 4pm, after the police had told him about our protest, BCC's Director of Health and Social Care Peter Hay actually came out to meet us (the other councillors and executives we addressed our demands to were apparently still in their "important meetings"... presumably deciding just how little of their 2009 budget they could get away with doling out to disabled people), and after some negotiation we secured a meeting with him and other representatives of his department on Friday 3rd April, as a result of which we decided collectively to call the occupation off and retire happily to a local accessible pub.

DAN's demands in Birmingham are for accessible, affordable housing for all disabled people (in ordinary streets and communities, not in the ghetto-like "Extra Care" housing developments that BCC is currently building, which will give disabled people living in them "in-house" staff as their only option for providing personal care needs, making them essentially no more than nursing homes under another name), Direct Payments to employ personal assistants (PAs) to be granted to all disabled people who need personal assistance (which it is a legal obligation for all local authorities to offer to all disabled people meeting the eligibility criteria - yet despite this number being in the tens of thousands in Birmingham, only 482 disabled people in the whole city currently get them), and an end to the unjust "care" charging policies which require the poorest disabled people to pay most towards their own "care", driving them even further into poverty.

Birmingham DAN know many disabled people who are literally unable to leave their houses (if they are lucky enough to be housed at all) and living in squalor and hopelessness without the assistance needed for the most basic of daily tasks (such as cooking, housework, and in some cases even dressing and showering) and, even when supposedly having "independent living", lacking any meaningful choice and control over our own lives. We demand true independent living (as defined according to the Social Model of Disability, meaning not "doing everything for oneself" but "having control over one's own life") and self-determination for all disabled people under the principle of "Nothing About Us Without Us"!

The Birmingham Post and Mail (2 local papers owned by the same company) both covered us, with slightly different photos and stories, but the latter printed the ludicrous claim on behalf of Birmingham City Council that “We’ve always maintained we are happy to meet with DAN representatives and discuss their concerns.” - well, if that was the case, we wouldn't have had to take direct action, would we?

BCC also exposed just how far they are from reality by openly admitting to the press that "the average waiting time for priority [housing] adaptations is 58 weeks" (yes, over a YEAR), as if that was something to be proud of... what planet are they on?

It remains to be seen what, if anything, will come of the meeting between DAN and Birmingham City Council on Friday, but we will assure them in no uncertain terms that if they continue to fail to meet their legal obligations to accessibly house and grant Direct Payments to disabled people, we will be back!

These issues are not just present in Birmingham but nationwide. After a relative absence for the last few years, DAN is rising up again to highlight and bring to an end these injustices. "When we are under attack - disabled people fight back!" Councils, charities and any other organisations which oppress disabled people around the country - watch out for forthcoming DAN actions near you...

Another report by a friend and comrade is here (some different photos).

There's also a video on YouTube by another friend and comrade (and another one, with captions, in the process of being edited, which will probably be uploaded to YouTube in the next couple of days).

The local paper coverage, including a short video, is here (and, yes, they did misspell my surname... as well as quoting me as having said something i definitely don't remember saying in those exact words - but that's commercial media for you...)

Edit to add - another activist-made video is now on Youtube here...

"Disabled have no right to choose carers"

2009-03-29T21:25:00.003+01:00

I wanted to write a long post about this, but am, it turns out, simply too busy. (Hopefully, fairly soon i will be a lot less busy, and will be able to get back to blogging properly. Apologies for my relative absence in the last couple of months.) Anyway, my friend Clair has posted on it, more succinctly than i could.

There's a hell of a lot here to unpack about what exactly constitutes "medical care" versus "social care", and the construction of the whole concept of "care" itself, which i'll have to return to in another post. Suffice to say for now, this is the sort of utterly vile injustice that routinely goes unquestioningly accepted, not even recognised as a "problem", because of the level of power and... i'm not even sure if there's a word for this, but... standing as something that simply Is, immutable and unquestionable as the laws of gravity, despite its being entirely socially constructed... that medical authority has in Western society. There's a paternalism at the heart of so-called "medical ethics" that shudders me so deeply that i would honestly prefer it if doctors and nurses actually were the entirely amoral beings, viewing the bodies of their patients only as a mechanic views the vehicle or other machine ze is working on, that the "pro-life" movement (and often the bits of the disability rights movement mistakenly allied with it, as in my last post) likes to portray it as. The irony is that that "scaremongering", for me, would make the medical profession less scary if it was true.

And i'm already rambling far away from the topic only a couple of paragraphs in, so i'm going to leave it here for now. There is something *big* happening tomorrow, which has been the main reason for my excessive busy-ness and lack of time for blogging recently. My next post will hopefully be a report on it. After that, i should be able to write all the posts i have been intending to for weeks if not months (in a couple of cases, arguably years)...

Also, hopefully i'm finally going to get round to making the changes and updates to my blog that i have been wanting to make for ages relatively soon (the changes in colour and layout made a few months ago were only intended to be a first stage, and possibly not even the final colours). This will include updating the blogroll and other sidebar links as well as trying to turn the look into something i'm satisfied with, so if you're reading this and you have a blog or site that you'd like me to link to, please let me know...

Also, this (by the inimitable cripchick, whose tech and image editing skills, as well as many, many other talents and qualities, i wish i had) is awesome. Go read it. Now.