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Friday, November 30, 2007

Really, really awesome speech by Eli Clare

BODY SHAME, BODY PRIDE: LESSONS FROM THE DISABILITY RIGHTS MOVEMENT by Eli Clare

An absolutely awesome, incredibly powerful speech about the intersections of trans, queer and disability identities and politics, about which i can't really say anything it doesn't say itself, except GO READ IT...

A few highlights:

Late at night
as I trace the long curve of your body,
tremors touch skin, reach inside,
and I expect to be taunted, only to have you
rise beneath my hands, ask for more.

Let’s lean towards a place where we can name bodily difference, even through our ambivalence, grief, longing, in ways that don’t fan the flames of shame, a place where none of us expect to be taunted and we know ourselves to be sexy and desirable.


---

The ability to keep bodily matters private is a privilege that some of us will never have. Just ask a poor person on welfare, a fat person, a visibly disabled person, a pregnant woman. Ask a person of color whose ethnic heritage isn't seemingly apparent. Just ask a seriously ill person, a gender ambiguous person, a non-passing transman or transwoman. All these people experience public scrutiny, in one way or another, of their bodies.

---

...the disability rights movement values self-determination. Who gets to make which choices about our bodies—where we sleep, what we eat, who we socialize with? A popular disability rights slogan declares, “Nothing about us without us.” For peoples who have long histories of institutionalization in nursing homes, group homes, psych wards, state hospitals, and rehab centers, self-determination is a radical and liberating politics. We get to determine how and when to explain ourselves, bodies not reduced to medical histories but rather belonging fully to us, doctors playing only small, bit roles. By valuing self-determination, we invite many different kinds of bodies to the table. We reach toward liberation rather than privilege.

---

Personally I’d like to grind the idea of normality to dust. I don’t mean that everyone in my worldview ought to be queer; it’s just that the very idea of normal means comparing ourselves to some external, and largely mythical, standard. But being normal or being queer aren’t the only choices.

but, the entire thing is utterly essential reading...

Eli Clare is the author of the excellent book "Exile and Pride: Disability, Queerness and Liberation" (which i've probably already mentioned several times in this blog... and there are still several posts i mean to write based on bits from it), and several books of poetry. Ze seems to identify as a queer woman in "Exile and Pride", but as a trans man in more recent stuff (such as this interview at EnGender), rather like Pat Califia, so i'm not 100% sure of hir preferred pronouns... Eli, if you're reading this, let me know if you're "he" all the time or only in certain contexts and i'll refer to you in future accordingly :)

and ze commented on my blog... :o *fannish swooning*

(as an aside, it's interesting that i first came across Pat Califia's writings as a trans man, then later discovered some of hir earlier works in which ze identified as a lesbian, and even later discovered ze had a physical impairment... whereas, i first came across Eli Clare as a disabled queer woman writer (through AK Press), then only later discovered stuff ze wrote in which ze identified as a trans man... i wonder how many other writers have gone through this process of identity, and how much of what has been seen as "lesbian culture", as a result, could more accurately be described as trans man culture?)

anyway, yeah. trans/crip alliance stuff rocks. :)

Thursday, November 29, 2007

Just sent an email I could and should have sent any time in the last 2 years

I have absolutely no idea whether it's a well-worded email. It almost certainly isn't exactly the email i wanted to send, or should have sent. But, fucking hell, after 2 years of procrastination and meaning-to-do-it, I finally went and sent it...

To: disability-studies@leeds.ac.uk

Subject: MA Disability Studies

Dear CDS Staff (apologies for not knowing exactly who to send this enquiry to)

I am interested in applying for the MA in Disability Studies, ideally for September 2008 entry. I would like to know what, if any, possibilities there are for obtaining funding from external sources to do this course, either as a one year full-time MA or as a part-time MA.

I am a self-identified disabled person, with a medical diagnosis of Asperger's syndrome, and am involved in the disability rights movement as an activist and writer/advocate. One of my key interests is the relationship between impairments (particularly "hidden" impairments such as those on the neurodiversity spectrum) and the social model of disability, and one of the primary goals in my life is to forge closer links between disability activism and advocacy and the academic study of disability from social, economic and political perspectives.

I have a BA (Hons First Class) in Politics with International Studies from the University of Warwick, gained in 2005, but am currently unemployed due primarily to impairment-related issues. My experiences both of unemployment and of paid work have convinced me that academia would be my ideal life situation both in terms of my own satisfaction and of the good I would be able to do for the world and in particular for my fellow disabled people and disability theory and culture.

My other areas of academic interest include social ecology, libertarian socialism(s), gender and embodiment, and concepts of productive and non-productive work and the dichotomy between "work" and "non-work" activities. One of my long-term aims is to attempt to incorporate a disability perspective into an analysis of these issues.

I would like to visit the Centre for Disability Studies at the first convenient date to find out more details about the course and in particular to discuss funding possibilities. Could you let me know if and when this would be possible, and what opportunities too talk to CDS academics about the course might be available?

Yours

[my real name]


It's... possibly ironic that it took the recklessness of being in a near-suicidal* state to write it... but, i'm reminded of what Amanda Baggs said here:

“I’ve written things about the value of all people’s lives while wanting to kill myself, and seriously contemplating doing so. I’ve seen that Sue Rubin has spoken out about torture at the Judge Rotenberg Center while utterly loathing large parts of her brain and body. This does not make self-hatred and despair good things, it just means that even in those circumstances people can do important things, and that waiting around to not experience those things might mean leaving important things left undone.”

*well, not actually suicidal, because i don't think i'm capable of actually wanting to die - death is something i literally cannot think about without lapsing into utter, abject teror and inability to comprehend my own non-existence - but, right now, i feel like i don't deserve to live, like i'm a complete fucking parasite, a monstrous, irredeemable creature that can only take from the Earth and from humanity and never, no matter how hard i try, give... like i am a creature whose needs and desires are so utterly, fundamentally unfair and unreasonable to the rest of the universe that the only good thing i could possibly do for this world is get the fuck off it; and, to cap it all, too much of an utter coward to even do that one potentially-redeeming thing.

But i don't want to die... because of the vital, amazing, awesome movements that i've only just discovered (that i might, possibly, even be instrumental in the rebirth and re-evolution of)... because of all the ideas swirling around in my head that i so urgently feel the need (and simultaneously the inability) to pull together - some of those ideas ones where i feel like i might be the first person ever to have thought of putting them together (of course i'm probably not, given the infinity of human imagination, but still that's what it feels like sometimes)...

What do you do when dying isn't an option, but living doesn't feel like one either?

Nevertheless, what Amanda said holds; and, of course, i'm confronted with the paradox that, if anyone else i knew found themselves in the situation that i'm now in, i wouldn't hesitate to leap to their defence, to tell them they were utterly within their rights and treated unfairly, that they didn't deserve any of the shit being said about them, that they were being discriminated against, that there were all kinds of positive and love-worthy and redeeming things about them, etc, etc, etc... and yet, when it's me, absolutely none of that stuff holds, and when a friend says it to me, i try to disprove it because i know in my heart of hearts that it's not true, that i am wrong in every aspect of my existence, the thing that should not live...

How the hell do i integrate this with talk about "activism" and "advocacy" and all the rest of it?

I am a doubleplusgood doublethinker. Which, probably, is doubleplusbad... ;)

Anyway, i sent the email... waiting for the reply is, i guess, one more thing to live for...

Thursday, November 22, 2007

Word power: communication difficulties (with digressions into climate change and the Sapir-Whorf hypothesis)

(this was originally going to be a comment on Bev's blog, but as i don't feel like i've been posting enough about autism as such on my own blog, i decided to expand it into a post proper...)

Bev at Asperger Square 8 has been saying a lot of good stuff about speech and communication recently that i strongly identify with, even though i've nearly always been regarded (by myself and others) as a very verbal person.

As I have mentioned before, writing is easy for me. I can tell you much more in an e-mail than I can in person. Telephone calls are the hardest method of communication.

This is incredibly true of me. I really, really suck at telephone calls with people i don't know well. Calling someone i need to contact but have never spoken to before can be such a daunting task that it can take me literally months to get round to it. (It was September of last year, at a protests against the Labour Party conference in Manchester, when i first met and got the phone number of a fellow disability rights activist here in Birmingham - it was at least November before i phoned him... and then the phone call was an utter nightmare because i couldn't understand his accent. I still haven't called the number of someone who could help with my screwed up benefit claim that i was given at least 2 months ago.)

On the other hand, there are emails to people that i have procrastinated for as long or longer about sending... but in those cases, the reasons for the procrastination are somewhat different. One particular problem i have is when sending emails in "formal" contexts (job applications, enquiries about postgrad courses, etc) is how formal a writing style to use - the normal email style of "Hi" or no salutation whatsoever doesn't feel right, but old fashioned "formal letter" style feels somehow wrong for an email as well - as if i'm some anachronistic luddite who still thinks he's using a fountain pen. (Although, to be fair, i actually am the latter in many respects...) Generally, though, i'm a shitload more fluent in writing than i am in spoken conversation...

(and, when i'm speaking, especially about technical or theoretical subjects, i tend to use the same parenthetical, multi-clause-sentences, uni-essay-like style that i use when writing... which has been known to confuse or infuriate some people...)

(you know you're hyperlexic when you wish you could speak commas, semicolons, quotation marks, ellipses, parentheses, and even, since i've started blogging... HTML links ;o )

I do the drawing/doodling to focus attention while listening thing too, and remember being told off by teachers for it (one weird thing when i first self-diagnosed as Asperger's is that the first book i found about AS had a design on its front cover almost identical to my doodlings in the margins of my school books... i can't remember the exact title or author of the book, but it was an orange and black cover...).

(EDIT: I found the book through the comments to Bev's blog entry - and it is, in fact, a doodle by an actual Aspie! Maybe there is some kind of... shared style, or something? That's actually a bit spooky...)

And another common experience at school was being told off for "not listening", when in fact i was listening, i just wasn't looking... one thing i always want to say is "I can either look at you or listen to you, but not both". Even as a child, it seemed deeply illogical to me that, to be percieved as "listening", one had to be looking in the direction of the person or thing one was supposed to be listening to - after all, humans (unlike many other species of mammals) have eyes on the front of our heads, and ears on the sides of our heads...

~Don’t jump to conclusions based on body language. I have often had people interpret my posture or facial expressions to mean something far from what I was thinking or feeling. If you know someone is autistic, be aware that that person’s face or body may be speaking a foreign language. Nothing kills a conversation faster for me than having someone tell me what I am thinking. Don’t assume.

YES YES YES AND A THOUSAND TIMES YES. I have had some... interesting experiences with friends and acquaintances who thought they could tell what my "body language" was "saying", to put it mildly. One very close and long-running friend (at 5+ years to date, the longest-running close friend i have ever had, in fact) claims that she can interpret my facial expressions, and that they are "consistent" (to my actual emotions), but not the same as the facial expressions a neurotypical person would have while experiencing those same emotions. I'm actually not sure about that one myself, though i'm willing to accept the idea that i do have some meaningfully communicative facial expressions, even if they're not the same as neurotypical ones and/or learned rather than "instinctive" - however, even if it isn't strictly true, i would probably prefer people (who don't know me very well) to assume that my facial expressions are not intentionally communicating anything.

A particular (and possibly related) communication difficulty i often experience (especially with not-particularly-close friends, and/or people who are NT but "sensitive") is that, when i state facts, particularly negative-seeming facts, about my impairment or my life, i get a response which seems to assume that the purpose of what i said was to try to get the other person to deny it, or to "reassure" me that it isn't really true. This is probably one of the most frustrating and upsetting responses anyone can experience, and has led directly to the end of several friendships. A tip to any IRL friends/acquaintances who might be reading this - when i state something about my life, please don't contradict me. If it's something negative and i'm saying it in what seems like a despairing context or tone of voice (the latter, again, is not a reliable indicator of real emotion for me), then the response i'm looking for is not "reassurance", aka denial, but acceptance of the fact, or at least my perception of it, and suggestions for ways to change that reality.

(If i was talking to you about climate change, you wouldn't, or at least i hope you wouldn't, respond with something along the lines of "It sometimes seems like that, but climate change isn't that bad really, here are X, Y and Z reasons why - you just need to change your despairing attitude" - you would, hopefully and assuming we're on the same page in understanding that climate change is really happening, respond with ideas for activism against climate change...)

Someone in the comments mentioned not liking it when ze asked people to repeat things and they rephrased them. This is kind of ironic, because i absolutely hate being asked to repeat what i have just said, and often actually can't repeat it in the exact same words, thus often responding with an expanded or rephrased version of it...

The same person talked about difficulties with "passive" language:

I particularly have a hard time when folks make their language “passive” in order to make it sound more polite, or something. Not only is it condescending, it also quite literally changes the meaning.

This strikes a chord with me, because another thing i have an absolutely unreasoning hatred for is the passive voice (I would seriously like to see it wiped out of the English language). The commonest example of this i encounter, and therefore the one that irritates me the most often, is the phrase "Are you being served?"... which raises really interesting questions about how language shapes ideology and vice versa (the Sapir-Whorf hypothesis - a big influence on George Orwell and Ursula Le Guin, both of whom are big influences on me), because of my corresponding horror of the concept of "being served", which is a major component of both my libertarianism and my submissive orientation, and the reason i really don't like going to restaurants... i am actually quite glad that i'm not a PA user). Oddly, i don't have anywhere near as much of a negative reaction to the colloquial use of "to get" to form the passive as i do to the passive formed with "to be". Running with that Sapir-Whorf thing, i can't help wondering if, in a language with no grammatical passive voice, people would be generally more "active" or "do it yourself" in attitude...

Back to the topic, and moving on to the earlier of Bev's posts, there are times when i find talking almost impossible, even though i am "usually" a fluent talker (or at least within my areas of interest)... it's just that the people i socialise with don't tend to see that side of me much, because i only go into social situations when i'm already mentally prepared for talking. For instance, although i'm capable of having a perfectly fluent internal monologue (and even of rehearsing conversations i intend to have, another thing that i have done pretty much all my life without realising until very recently that it was an autistic trait), and of reading and engaging with long discussions online, as soon as i wake up, it takes me at least 2 hours of being awake (and preferably food and caffeine within those 2 hours) before i can coherently talk to another person.

I also, perhaps paradoxically, find it much more difficult to talk to people in my own home than i do in other places (although this is another one which doesn't apply to people who know me well) - i think this is because, in my head, my home is the place where i can "shut down" all the extra brain activities that i feel the need to use in the "outside world" - similarly, most of my sensory issues (hunger, aversion to cold, unpleasant textures, etc) are easier for me to cope with outside the home than inside. I often find myself relying on memorised "script" phrases (basically, echolalia used consciously and constructively) in conversations required of me in the home.

One particularly (although, of course, unintentionally) irritating and stressful habit of several of the people i've shared houses with (none of whom i've been "out" as an autistic person to, although i'm sure they've all percieved "something wrong" with me) is that of shouting out a greeting as soon as they hear someone enter through the door - thus creating an expectation of a reply which i feel both an obligation and an inability to meet, resulting in major (even if arguably trivial) stress. I can usually manage only (at most) a mumbled, inarticulate sound in reply, which i tend to desperately hope vaguely resembles a greeting-word (sometimes i think it's pretty close to "Hi"). Greeting-words in general are a particular difficulty for me, as they seem to be for many autistic people - i find it very, very difficult to pick the right one...

The pressure-to-respond thing also strikes chords - very often, i am much more able to say or do something when i am not being asked or expected to do it than when i am (another possible contributory factor to my libertarian philosophy?). I remember one particular incident when i was cooking for myself and the friend i was living with at the time, when i was literally just about (as in, within half a minute) to start cooking, when said friend knocked on my room door and asked me when i was going to start cooking, The interruption both delayed me starting to cook by about 10 minutes, by forcing me to restart several trains of thought, and made cooking the whole meal a much more stressful experience than if i had not been "prompted" to do it.

I'm not sure how to conclude this post (another of my quirks of verbal communication?), so, er, i'll just... stop here... but, big thanks to Bev for her posts...

Amanda at Ballastexistenz also has a good recent post in the same general subject area here...

Wednesday, November 21, 2007

Trans liberation and disability liberation: a necessary alliance

Today is (or, technically, yesterday was, as it's now about 4am here in the UK) Transgender Day of Remembrance, "set aside to memorialise those who were killed due to anti-transgender hatred or prejudice". Several bloggers I read wrote moving and powerful posts about this, which inspired me to write about what I believe to be both a natural and necessary alliance between disability and transgender issues...

One of my closest friends is a trans woman. It was her coming out as trans (at which point in fact we were not particularly close friends), and the ensuing conversations between us about identity (both gender and otherwise), disability (she also has a physical impairment), the psychiatric/mental health system, childhood experiences and other stuff, that led me to seek diagnosis for Asperger's at the age of 22, and ultimately to embrace "disabled" as an identity.

While I would never claim to appropriate her experience, there were levels of, particularly childhood, experience on which I connected more with her than with anyone I had ever known before - conversations which lasted from early afternoon until sunrise the next morning, and which felt like the deepest I had ever had in my life. Essentially, the experience that we both shared was that of having been brought up by (suburban, working-class-but-educated) parents under the assumption that each of us was a "normal boy", when in fact both of us were something else - an experience which is difficult to explain in many ways, because it is just as harmful and destructive as the experience of deliberate abuse, yet those responsible for it were acting not from any kind of malice but from a completely genuine desire to do good.

In fact, this is a defining characteristic of many if not most disabled people's lives (although particularly, specifically so for those whose impairment or other physical or mental "difference" is not diagnosed until adulthood) - false assumptions about who and what we are, resulting in well-meaning treatment that is as harmful as, or even more harmful than, malicious treatment would be. It is an experience that can be survived, even triumphed over, but not without scars - in some cases physically as a result of either "self-harm" or unnecessary and therefore harmful medical treatments, in pretty much all cases metaphorically in the form of reactive depression and PTSD. (Show me either a congenitally disabled person or a trans person who doesn't have PTSD, and I'll show you someone who must have been brought up in Utopia.)

I have seen my friend grow into a beautiful woman, while she has had to see me (in many ways) "regress" or "deteriorate". I have seen her grow into herself, while I am still not sure if I truly have a "self" to grow into. I have seen her dysphoria turned, quite literally, into euphoria by a simple little pill (the only medical-model solution for depression I have ever seen that actually worked, which makes a mockery of some so-called feminists' ideas about transitioning as a form of "self-hate" or "self-mutilation"), while there has been no such easy solution for me. This cannot have been easy for her: yet, through all of it, she has treated me continuously and consistently as a friend and an equal. There is no better definition of a friend, comrade, ally.

I believe that the disability rights/liberation movement and the trans* rights/liberation movement are natural allies, even if many within both of them have never considered that alliance. Both are about acceptance rather than elimination of physical and mental difference. Both are about freedom of choice, the inalienable right of the individual to have self-determination over, and to be regarded as the person with the best knowledge of, hir own brain and body. Both are about the depathologisation of that which the establishment persists in considering pathological. Both intersect with feminism in incredibly exciting ways which can enable feminism (if feminism lets them) to get beyond problems and dichotomies which it has struggled with for generations (see FRIDA and The Transfeminist Manifesto (PDF), and also, for intersections of both movements, the very awesome Emi Koyama). Both are about resistance against a patronising, patriarchal, paternalistic medical establishment which claims to know our bodies and minds better than we know them ourselves. Both are about human biodiversity.

There is considerable overlap, also, in the area of intersex conditions, which can be regarded both as physical impairment (and are often accompanied by, or "comorbid" with, other physical or mental impairments) and as a gender identity issue; Emi Koyama has written (although I haven't read it) a lecture with the awesome title of "Intersex at the Intersection of Queerness & Disability Theories". There is strong evidence that many people labelled "transsexual" may actually have one or more undiagnosed intersex conditions. The routine mutilation, often without their parents' either consent or knowledge, of intersex babies to make them "conform" to one binary gender or the other (which, of course, if the doctors get it wrong, leads to gender dysphoria and thus transsexualism) closely parallels the non-consensual sterilisation and other surgical mutilations of physically and/or mentally disabled children.

The long and sad history of trans* people murdered because of transphobia, and the horrifyingly widespread belief that those murders were justified because of those people's gender identity, is paralleled by the equally long and sad history of disabled people murdered (often under the guise of "mercy killing") by family members, "carers", medical professionals and institutions, and the similarly horrifyingly widespread belief that those killings were justified because of the victims' impairment or disability. Both groups were among the first to be killed (before Jews or any other ethnic minority) in the Holocaust.

This is why I think that it's absolutely awesome that disability bloggers such as Elizabeth McClung and Trinity have blogged about Transgender Day of Remembrance, and that Lisa Harney of Questioning Transphobia has posted a link to this video by Amanda Baggs. I would absolutely love to see a movement which actively brings together the disability and trans* movements (along with all kinds of other diversity-related movements), as "the human biodiversity movement", but in this lifetime, the disability movement and the trans* movement recognising and appreciating one another as allies is enough. Well, in trying to change the world, there's never really such a thing as "enough", but you know what I mean...

Transfeminist blogger Little Light wrote a truly awesome piece called "the seam of skin and scales", in which she declared "It is time for a feminism of the monstrous". While on an immediate level it's about her own identity and experience as a transsexual feminist, there is a hell of a lot in it that disabled people can equally well relate to. Disabled people too have been treated or regarded as monsters, freaks, subhumans, deviants, abominations, angels, demons, changelings, witches. Her writing sparked off a blog war with certain dogmatic "radical feminist" (IMO, their position is neither) bloggers who accused her of plagiarism (with no realistic case whatsoever).

What this is rooted in is the refusal of certain strands of feminism to accept trans* people's realities, in the same way that some of the "straw man" style critiques of disability rights are based on a refusal to accept disabled people's realities. In both cases, the issue is complicated by some well-meaning defenders of inclusion (consciously or unconsciously) embracing in reality the irrational positions that their respective movements have been stereotyped as holding.

Transphobic "feminists" tend to advance the position that transitioning is a "choice", and one which is harmful to the cause of feminism by "reinforcing feminine stereotypes" and/or "men invading women's spaces" in the case of trans women, or by "deserting womanhood to get male privilege" in the case of trans men. This - apart from having no relationship at all to reality except in the minds of people who have almost certainly never even knowingly spoken to a trans* person - completely ignores trans people's lived realities, of, for example, having known they were girls/boys from as early as they were capable of coherent thought (despite physical "evidence" of the opposite), or of having been continuously depressed to a suicidal extent (without anything other than gender dysphoria for that to be reactive to), along with other symptoms including physical pain, to be near-instantly "cured" on starting gender reassignment treatment. Trans*-ness is attributed solely to socio-political factors and even the possibility of its being the way a person was born is excluded without consideration. (For an example, see Sheila Jeffreys' claims here.)

(This is, of course, like all identity issues a complex and contested area - I have encountered (albeit only online and not in "real life") trans* people who claim that they did "choose" to transition, and did not "always" experience gender dysphoria, and I certainly don't wish to deny their realities. Ultimately, I don't think it matters if someone did choose their gender identity - I wrote about the same issue with regard to sexual orientation here... however, no one has the right to, or honestly can, deny the existence of those whose gender identity is, to them, innate.)

I see similarities here to a "straw man" version of the social model of disability, which is often advanced in order to deny it or reduce it to absurdity - i.e., that the social model supposedly states that impairment does not exist, or does not matter at all, and thus denies the reality of people whose impairments cannot be (fully) compensated for by social change. The earliest originators of the social model, such as Mike Oliver and Vic Finkelstein, shared with Marxists (from whom their critique was largely derived, albeit IMO going beyond Marxism in several crucial ways) and second wave feminists a focus on the sociological sphere and how it, rather than nature, was the source of many forms of oppression and injustice, patriarchy and disablism among them. Thus the early social model theorists did not write much about impairment, because the point of their writing was to take the focus away from impairment; however, there is nowhere that I know of, even in Finkelstein, that they deny its reality. However, this "straw man" causes many people, including disabled people, to reject the social model of disability altogether - much as the transphobia of much second-wave/radical feminism causes many trans* people to reject feminism altogether.

(On a more impairment -specific level, I see something kind of similar in some autism advocates who refuse to see autism as a "disability", or even as an "impairment".)

Disabled feminist writers (eg. Jenny Morris, Carol Thomas, Micheline Mason) have sought to redress this balance by "bringing impairment back in" to the social model, influenced by third-weave* feminist and ecofeminist writing about embodiment - arguing that diversity and difference need to be embraced, not denied, and that impairment as a lived reality inevitably informs our understanding of the world as disabled people, just as disablist oppression does, but that this can be seen as a positive thing, allowing as it does for plurality of experience...

*typo, but so appropriate I decided to leave it in ;)

Just as transphobia does not define transsexualism, so disablism cannot (wholly) define disability-as-identity. Just as even in a world completely free from disablism, impairment would continue to exist, and to affect some people negatively through factors such as pain, communication difficulties which cannot wholly be solved by technology, or shortened lifespan, and some impaired people would need medical interventions (whether drugs, surgery or both) in order to stay alive or have a decent quality of life, even in a feminist utopia where the shape of one's genitals has literally no significance socially, politically, economically or culturally (which would be (one aspect of) my utopia), there would still be people who would need hormone treatments and/or genital surgery to have a bearable life because of the physical condition (presently called gender dysphoria, in a gender-free utopia probably called something else) in which their "brain sex" and physical/hormonal sex do not match. Transsexualism is (like) impairment; transphobia is (like) disability.

Sadly, I am almost certain that there are transphobic disabled people and disablist trans* people, just as there are racist disabled people, homophobic black people, classist feminists, sexist working class people, etc, etc, etc. However, I can't help but dream of a banner of diversity under which all oppressed people can unite as allies in one another's struggles. For this to ever become anything like a reality, seeking out of parallels and interrogation of assumptions held about one group or movement by another is a permanent, ongoing necessity... and, just maybe, an alliance between the trans* liberation movement and the disability liberation movement could be the start of such a reality...

Tuesday, November 20, 2007

Bizarre spam comments, and reasons for not posting.

OK, i have now enabled comment moderation, because 2 of my posts have attracted... extremely odd spam(?) comments, from someone who likes to write dissertation length rants attacking every race and religion imaginable, telling everyone that they need to become asexual, and going on about (plural, non-specific) "gods" and "the disfavored" a lot. I don't know whether anyone else has been targeted by this individual, but hir comments were not just nonsensical and offensive to... pretty much the entire population of the world, really, but so long that my computer very nearly crashed when trying to load the comment pages in order for me to be able to delete them.

(OK, so my computer crashes/freezes/does inexplicable things pretty much all the time, being about 10 years old and with nowhere near enough RAM or hard drive space to be even able to handle broadband internet, really... which is one reason why i'm on Blogspot, and not Livejournal, because LJ pages seem to be so data heavy that they can cause freezes from trying to load them. Which sucks, because there are several awesome blogs on Livejournal, and i'd like to be able to comment on them. Why i'm on Blogspot and not on WordPress is another question entirely, and one i'm increasingly not finding any acceptable answer to... maybe i'll move to WordPress eventually, but i think i need a bit more tech knowledge first. Anyway, this parenthetical paragraph has got far too rambly...)

The thing is, i'm not 100% sure exactly how comment moderation works. I'd like people to be able to post comments on my blog without having to wait for approval, just as they could before comment moderation was enabled, but i'd also like to be able to delete gigantic, nonsensical spam comments. However, there seems to be no way to enable deleting comments without comment moderation...

I'd also like comments to appear underneath the post when you click on the "n comments" link, rather than going to a comment page that doesn't include the original post. I don't know if that's possible without sacrificing the ability to delete comments, tho...

If anyone knows exactly how comment moderation works, and/or if it's possible for me to have the combination of features i want, please let me know. Unfortunately, i don't know exactly what will happen to your replies if you post them as comments to this post...

Also... i said in the title of this entry "reasons for not posting", but i don't think i have the energy to actually go into those reasons right now. Suffice to say, i have an ever-growing list of stuff i want to write blog posts about, and quite a few that i intended to post in the last few days, but some shit has been happening in my life that has been leaving me extremely stressed and without the kind of levels of concentration or rational thought necessary for coherent writing, or the faith in my own ability to understand or justify anything to allow me to write it. However, this stuff is hopefully short term, and going to be resolved, and when it's resolved i'll probably post about it. My mind is in too much of a state of flux for me to feel able to post about it before it gets resolved, tho...

Anyway, i'm gathering some determination to work through the above shit and write some posts on unrelated issues in the next couple of days or so...

Tuesday, November 13, 2007

What do we want? Equality! When do we want it? Er... in 18 years?

So... today i went to the Equality 2025 conference at the ICC in Birmingham. (I was actually blagged in as a fellow disability rights activist's "PA", but nobody seemed to care once we were in there... at least one other activist i know did the same.) "Equality 2025" is the Office for Disability Issues's big new "brand" for disability rights and equalities, basically consisting of attempting to consult disability activists and (supposedly) using the results of that consultation to influence government policy. Just how real (or, conversely, how tokenistic) that consultation is remains to be seen...

The conference format involved presentations from speakers (some followed by question-and-answer sessions), alternating with splitting into small groups (arranged around numbered tables), each with a "facilitator", to discuss different aspects of the key issues and then choose one person to feed back to the whole conference. It was interesting to observe the similarities and differences to (supposedly) non-hierarchical activist gatherings such as the Camp for Climate action gathering i went to last week, and some of the terms and concepts which seem to have been co-opted by government from new social movements (creating a kind of pseudo-non-hierarchical conference style?)...

One of the 4 "Hot Topics" of the conference was the government's (supposed) aim to set up "User Led Organisations", modelled on the existing Centres for Independent Living, in every area of Britain, and using money from a Department of Health "development fund". Of course, from a cynic's point of view, this is questionable considering that existing CILs are being closed down, struggling to survive funding cuts, or being seriously compromised (arguably even corrupted) by conditional funding from "charitable" sources... A word mentioned several times, but not really clarified, was "businesslike" - seemingly implying that one intent was that the new ULOs should in some way act more like corporations.

The lack of consensus about what the phrase "Independent Living" really means (both in the eyes of the government and in reality), and about what a "User Led Organisation" should look like, was also discussed - some activists challenging even the use of the word "user", and some criticising the implicit medical-model thinking of the funding coming from the DoH. The urban/rural divide also came up, with an interesting (but possibly difficult to implement) idea of a "mobile CIL" that could visit isolated disabled people in rural areas.

Second was the United Nations Convention on Disability Rights. Interestingly, the description of rights given by the presenters in describing the UN Convention was a fundamentally moral conception of rights - i.e., rights as "things" which exist independently of laws and governments (or which "every human has and which cannot be taken away", as one speaker put it), but which can be either upheld or not upheld by laws - a liberal conception which, IMO, somewhat fails to recognise the reality of the lives of people living in the many, many situations (such as disability institutions) where they don't "have" human rights in any meaningful way, regardless of whether they morally or theoretically have those rights. Possibly this is the philosophical question of the difference between an "is" and an "ought"?

The UNCDR is very clearly rooted in the social model of disability - containing such rights as inclusive education, family life, the right to choose where to live, to participate on an equal level in public and political organisations, and to have organisation of disabled people. As such it stands in clear contrast to the DDA 1995 and the current Single Equality Bill, which are both essentially based around a medical model definition of "disability". The UK has signed but not ratified the UNCDR - despite the fact that countries such as Cuba, Jamaica and India have ratified the convention...

The remaining "Hot Topics" were young disabled people's transition to adulthood and disability-related hate crime. Annoyingly, each table was only given the opportunity to discuss one of those issues (ours was given hate crime), and then the tables' responses were read out in indiscriminate order, mixing up the responses to both topics. The person chosen to feed back from our table was a non-disabled spokesperson for Scope and RNIB (note that these charities are now trying to portray themselves as campaigning for equality, while still being controlled by non-disabled people and practicing segregation) - my points about institutional disablism being a root of anti-disabled hate crime, and things being done to disabled people (such as locking them up and denying them rights as basic as the right to choose what to eat, when to go to bed or when to go to the toilet, cutting out their organs without their consent, or killing them) which would be universally considered hate crimes if they were done to any other minority group, being considered to be acts of "care" and done in our best interests because of the deeply fucked up medical model images of disabled people (as "burdens", as "helpless", as objects of pity, etc) that are so prevalent in media and culture, completely failed to be fed back...

The statistics quoted on hate crime (which were shocking enough - for example, that 1/3 of people with learning impairments experience harassment every week, and that 47% of physically impaired people had either been physically abused or seen fellow disabled people get physically abused) were also ones which came from charities (Mencap and Scope, in the above examples), rather than from organisations of disabled people...

Some good points were, however, allowed to filter through to the conference, including the way that the mental health system pathologises "service users" for reporting hate crime, the fact that some disabled people may perpetrate hate crime against others (often due to "divide and rule" hierarchies of impairment), and the prevalence of perceptions of disabled people as either "socially deviant" or "vulnerable and childlike" - although some truly idiotic ideas were also not only expressed, but seemingly approved of by large numbers of delegates - such as "punishing" perpetrators of hate crimes against disabled people by forcing them to "work with" disabled people... Yeah, and punish rapists by employing them as rape crisis counsellors while you're at it (that was sarcasm, for anyone who isn't good with that)...

Similarly, some good points were allowed to come through about young disabled people and their rights to full citizenship, such as the taboo subject of relationships and the assumption of asexuality, the need for young disabled people to meet older disabled role models, and that non-disabled parents of young disabled people are often potential opposers of their children's rights, and thus it is crucial that they be educated to be allies, arguably from as early as antenatal classes if a diagnosis of impairment exists at that stage (something obviously very strongly felt in the shadow of the Katie Thorpe case).

However, if my experience was in any way typical, the more radical ideas raised in the small groups (i.e., the ones which directly threatened the government's spin of itself as safeguarding and upholding disability rights) were all probably discreetly not given a platform. The notes made by the "official" notetakers at each table were collected, supposedly to be used in consultation, but the cynic in me finds that extremely doubtful...

It was however heartening that there was a general recognition (at least among those present who i had the opportunity to hear the views of) that "Equality 2025" is a bad joke - the DDA was supposed to give disabled people equal rights in 1995, 12 years later in 2007 it clearly hasn't, and now we are being promised "Equality 2025" - a wait of another 18 years!? (Apart from the fact that "Equality 2025" sounds like some strange socialist space opera - a Cold War Russian equivalent to Star Trek, perhaps?) We need equality now.

(Hmmm... possible disability movement counter-ODI logo/slogan - the Equality 2025 logo, with the pink and blue changed to red and black, and "2025" changed to "NOW"... anyone got photoshop skillz? Not quite sure what "Working with government for disability equality" should be changed to tho...)

(edit: i can't find the Equality 2025 logo online, although you can see a hand-drawn version of it in one of the pics below... will scan it if i get a chance...)

Non-content-related stuff: the free food was pretty good (one decent veggie option, although there was nothing vegan... tho what the so-called "potatoes" actually were, i don't know... but very, very nice coffee cake), and we (the Birmingham Coalition of Disabled People/Housing4All posse) stocked up very well on discarded notepads and pencils afterwards... there was some positive networking for Housing4All as well, despite us running out of leaflets :)

Accessibility wise things were as good as could be reasonably expected, with sign language interpreters (and a spoken English interpreter for the speaker who was a BSL user), palantype, an audio loop and good physical access, although there was one amusing moment when the palantypist mis-typed "neurodiverse" as "neuroadverse people"... ;)

There was also a rather amazing woman (not really sure if her role was part of the accessibility, or just to provide something visual) whose job was apparently to create a cartoon representation of all the discussions on huge pieces of paper pinned to the wall, in a brilliant Tony Hart stylee using huge paint pens:













There were points at which i found myself experiencing a strange cognitive dissonance, thinking "what am i, as a notorious anarchist who thinks government is the problem, doing here at a government consultation event?". I think this is one of those examples of intersectionalities of movements creating strange bedfellows - one particularly strange position i found myself in was that of demanding stronger anti-discrimination legislation, including criminal punishments for businesses such as losing their licences for breaking equal access laws - when normally i would be totally against the whole concepts of a criminal law system and of licensing... this is definitely a whole area which i need to explore more ideologically and try to put together a more "joined-up" perspective on...

One thing that kind of pissed me off (although i don't know what people with learning disabilities which affect verbal comprehension would think of it) was the IMO quite patronising tone of the "easy-to-understand" documents in the free pack accompanying the presentations. Much worse than patronising tone (which is, of course, subjective), however, is the blatant distortion of the first sentence of the document accompanying "Hot Topic presentation 1 - Independent Living and User-led Organisations" - "The government has a big plan for disabled people's lives to be equal to other people's lives" - referring to the Improving Life Chances of Disabled People" document - basically portraying the government as the author of the disability rights movement, instead of the primary institution that we have had to fight against to achieve rights, and which still ensures through all kinds of institutional disablism (in housing provision, in the benefits system, in employment legislation, in the "justice" system, in NHS hospitals, in segregated education, in its failure to ratify the UN Convention, etc, etc) that disabled people's lives are not "equal to other people's lives"...

Despite the obvious bullshit government spin and unlikeliness of anything coming out of this (except further flashy-but-meaningless "consultations"), this still felt to me like a positive event - although it might be that, because of my desperate desire to be involved in anything at all disability-related, i have somewhat lower standards for a government convention on disability than i do for, say, one on climate change - networking was good, there were plenty of radical people scattered among the delegates (and even the speakers/Equality 2025 committee members), and i got the same buzz i always get just from seeing and being around a large group of disabled people in one place at the same time (the variety of represented impairments was, IMO, to be commended, although there was probably an (extremely common) under-representation of people with learning disabilities, and the self-fulfilling perception of disability organisations as only for, or dominated by, wheelchair users to the exclusion of other impairment groups was at least mentioned).

It is still an absolute necessity for the disabled people's movement to fight for disability rights now, and not fall for government promises to sort it out over the next X number of years, however...

You can write to Equality 2025 c/o The Secretariat, 6th Floor, The Adelphi, 1-11 John Adam Street, London WC2N 6HT, or telephone them on 0845 460 2025 (UK)...

Monday, November 12, 2007

UK film project seeking disabled women (re Katie Thorpe)

Just in case any are reading this... not sure if it's limited to just women in the UK or if those in other countries can contribute too (tho i would guess the latter)...

Cherry Pop Productions - Me And My Womb

Cherry Pop Productions are a collective of multi media based disabled artists who have worked together for over five years. Led by Gemma Nash and Jo Barnes, Cherry Pop has produced vibrant photography, soundscapes, and documentaries that challenge discrimination and promote diversity.

Cherry Pop are now working on a short documentary entitled 'Me and my Womb' which will explore how disabled women feel about their wombs in response to the recent story of Katie, a 15 year old girl with Cerebral Palsy whose mother is requesting she has a hysterectomy.

'Me and my womb' will investigate the moral, legal, political and ethical issues this Katie's situation has raised and question whether we, disabled women, have the right to a womb.

They are looking for women with impairments of all ages and views to take part in this documentary. They would like contributions from all disabled women regardless of their desire to have children.

They need for you to either send them a pre-recorded video of your story or for an interview to be arranged to take place in either London, Cambridge or Manchester by February 1st 2008.

Pre-recorded video can either be done on DV tape and send via post or on a web cam and sent in an e mail. Your tapes should not exceed 15mins and tapes will only be returned if sent with a S.E.A.

Please contact Jo Barnes on Imogen.Jo@Gmail.com for more information and a contact address.

Friday, November 9, 2007

Oh, the irony

Seen on a bus:



(pic shows a small sticker/sign on a bus window, which originally said "Priority Seats: please give up these seats for disabled people", but someone has torn off the corner of the sign, with the result that instead it says "abled people"...

Monday, November 5, 2007

Panic over!

Well, just after that last post... the boiler started working again :)

Apparently it was something electrical, most likely a tripped fuse. It will take a few hours to get the house tolerably warm again, but the radiators are beautifully hot...

Maybe i need to blog about all my problems, and they'll solve themselves within a couple of hours...

Cold

I really, really cannot stand cold.

Yesterday i got back from an activist gathering i went to for the weekend to find the boiler in my house had stopped working. It is the coldest this house has ever been. Right now i am sitting at my computer wearing 3 jumpers and 2 pairs of socks, sipping very slowly at a hot cup of tea while alternating holding my hands against the cup until i have to stop because of the pain, with holding my hands in the cold air until i have to put them back on the hot cup because of the pain.

Cold makes my entire body feel stiff - so stiff that right now i can walk either like a Cyberman or like someone with spastic CP. My shoulders feel like there are a couple of bricks on each of them. My face hurts because my muscles are scrunching it up into a frown uncontrollably. I'm getting constipated because the cold shock of the toilet seat makes my anal sphincter tense shut. It feels kind of like being completely covered in something that i have a reflex to flinch away from - so i'm trying to flinch away from the whole of my own surface area at once...

I don't know if this is purely an autistic sensory-intolerance thing or if i have some sort of physical intolerance to cold as well. While the latter thought is scary, i actually kind of hope it's true because (like a couple of other things, such as the extreme levels of hunger i feel and my complete inability to put on weight no matter how much i eat) if it's physical it's potentially treatable, whereas if it's sensory/neurological then it's a basic part of who i am, and there's nothing that can be done about it except to accept it.

Also, my concentration is pretty much zero. I had a list of about 10 things to do today, and i've done one of them (and i only managed to remember to do that one because i sent an email to someone saying i'd already done it). Even my vision doesn't feel right (difficulty focusing and noticing things).

I have incredible difficulty in explaining to people just how badly i'm affected by cold. It's probably the primary component of my SAD (although light levels probably play some role, but i think that's more indirectly through effectively denying me the use of half my available day). In every single house i've ever lived in, there has been more or less major conflict over me needing to put the heating on and others turning it off - it has even led to me becoming the recipient of physical violence (from someone who wasn't even paying rent in the house). Last night, i went into full-on flashback panic paranoia PTSD mode because i tried to turn the heating on, it seemed to be turned off again, and this repeated several times before the boiler became totally unresponsive to anything at all - i was utterly convinced that someone else in the house was turning it off, or even had sabotaged it to prevent me turning it on.

(The rational part of my mind replies that no one would be crazy or vindictive enough to deny themselves as well as everyone else in the house all heating and hot water, just because they felt one person in the house keeps the heating on too much, but the paranoia/PTSD part of my mind is fuelled by all my lifelong experience of living in a world where everyone's opinions and feelings are regarded as reasonable except mine, and even things that are held to be reasonable when coming from anyone else somehow automatically become unreasonable if they come from me...)

I don't actually know what to do about the boiler. It doesn't have an instruction manual, i have no knowledge at all of how such things work (although i'm capable of effortlessly memorising the most obscure facts and theories, practical stuff like how to fix things never seems to sink in, no matter how many times i try to memorise it... this might be dyspraxia-related), i know the landlord would be no use because he doesn't speak English and has never fixed anything we have asked him to fix (and in any case i have no credit on my phone to call him), and i have absolutely no money to pay someone to look at and/or fix it.

I suppose i have to hope that a) someone else in the house is bothered enough to want the boiler fixed and thus phones the landlord, and b) he actually calls in someone competent enough to fix it and is willing to pay for it. In the meantime, i am going to have to work out where other than my house i can find excuses to be...

And this almost certainly isn't even anywhere near the coldest part of the year... why the hell do i live in England?

All the blog posts i had been planning to write over the current couple of days will have to wait until i am capable of sustained concentration...