;
;

Friday, January 30, 2009

Another offensive advert from Action for Children

Via a thread on the BBC Ouch message board and a comment on my last post, i have been alerted to the existence of a second advert by Action for Children which offensively stereotypes disabled people: Nicola's Story...

Again, it lacks subtitles, and i haven't seen a transcript already existing, so i'll transcribe it:

I started caring for my mum when I was 8 years old. She was diagnosed with having MS, so I had to look after her: help her to bed, help her to get up, get dressed, get fed[?]... I had to change the catheter bag, to clean her if she didn't make it to the toilet, and things like that. I had struggles - I didn't know how to talk to my peers, cause I didn't have time for fun and games. It was Action for Children that helped me, and... from then, I became a totally different person. I've been able to recapture some of my youth, and be a normal child.

(apologies for any mistakes - my auditory processing issues don't always interact well with certain accents, such as this Scottish one...)

The visuals in this case show a child's drawing stuck to a fridge become animated: a young girl is skipping underneath a red "love heart", which grows and falls into her arms as her expression becomes sad, synchronising with the words "I had to look after her". The girl staggers under the weight of the heart as the background becomes darker, lifting it into a bed and cleaning it. The heart gets bigger and darker, looking like it's crushing the child, until the red line which represents the charity (the same one that shredded Dan's "monster") lifts it away from her, causing it to shrink so that she can put it on her chest. The background becomes sunny again and "Nicola" regains the smile on her face and starts skipping again, with the heart having become the logo on her T-shirt.

Now, what's wrong with this picture? The heart seems to be intended to represent "Nicola"'s love and caring for her mother (note the conflation of "care" as used to mean personal assistance, with "caring" about someone as in a loving family relationship) - but with "Nicola" lifting it in and out of a bed and washing it, it also seems to represent the mother herself - reducing her from a human being to an inanimate object and, quite literally, a burden on her daughter - in about the most blatant characterisation of disabled people as "burdens" that i've seen outside of directly eugenic propaganda calling openly for extermination (see the origin of the term "Ballastexistenz").

No mention is made of the social factors causing children to have to take on "carer"/personal assistance roles for disabled adult family members: instead, it's "She was diagnosed with having MS, so I had to look after her" - blaming the disabled individual and her impairment, rather than a society which doesn't provide anywhere near sufficient funding for personal assistance for disabled people, and puts massive administrative barriers in the way of obtaining it (I personally know several people who have been put in life-threatening situations as a result of this, and one whose death might have been prevented if she and her partner had received adequate personal assistance services - for a current example, see the case of Minna Mettinen-Kekalainen, who is in Canada, but the same is going on in the UK), for the situation of a child being a carer, and portraying dependency as an inevitable consequence of disability.

Also, there are disturbing implications in what isn't explicitly shown here: in what way did Action for Children "help" Nicola? Was it, as with Dan, by moving her to some sort of residential institution? If so... what happened to her mother? Who provided her with the personal assistance that was previously being carried out by Nicola? Were both mother and daughter institutionalised in "care homes" (#1 contender for Most Orwellian Euphemism Ever), when it would have almost certainly cost less to enable the mother to employ a personal assistant to assist her with both her personal care and childcare needs, thus giving her choice and control and enabling her daughter to enjoy her childhood (I nearly wrote "have a normal childhood" - let's not even get into the loadedness of that term here), without causing either the disabled person herself or her non-disabled family members to perceive her as a "burden"?

Gah. I could write more, but i won't. It looks like Action for Children are eager to take a place up there with Leonard Cheshire and Scope in the disablist charity league tables...

Also: re the "Dan" advert, Action for Children have, on their blog, tried to deny that it demonises autism or autistic children:

"The monster in the advertisement is absolutely not Dan's autism. It is the way that he himself described how he felt his behaviour was before getting this support. Dan wanted to talk specifically about his autism and we believe it would have been wrong for us to censor him or his ideas in any way."

This, frankly, is fucking ridiculous - they are essentially blatantly denying the only interpretation of their advert that makes any kind of sense, followed immediately by shifting the blame from the makers of the advert to the child featured in it (and invoking "censorship"... :theatrically rolls eyes:)... so, if the monster is "absolutely not Dan's autism", then why does it being shown chasing people around coincide with "Dan" saying "My parents sought out help with my autism because it was becoming a pain in the bum"?

This is a completely cowardly and disingenuous statement, and excuses nothing.

One more thing: on the BBC Ouch thread, someone posted a link to how to complain about an advert to the UK Advertising Standards Agency: How to complain.

Their website also contains the TV Advertising Code (which contains quite a lot of stuff that i think is fucking ludicrous, and apart from the entire principle of censorship, if interpreted literally could actually make nearly all adverts bannable, but that's beside the point here). Of particular relevance to the Action for Children ads are these sections (and possibly others, but these are the ones that sprung out instantly to me on a quick read-through of the Code):

Section 4: Political and Controversial Issues

No advertisement:

(a) may be inserted by or on behalf of any body whose objects are wholly or mainly of a political nature

(b) may be directed towards any political end

(c) may have any relation to any industrial dispute (with limited exceptions)


Oh, the irony. I could write at length about how all charities are inherently political here... or i could just link to a Skunk Anansie song. It's late, so i'll do the latter.

Section 6: Harm and Offence

6.4 Personal distress

Advertisements must not, without good reason, contain material which is likely to cause serious distress to significant numbers of viewers


...

6.6 Harmful or negative stereotypes

Advertisements must not prejudice respect for human dignity or humiliate, stigmatise or undermine the standing of identifiable groups of people ...

(3) Anything which could encourage or condone the idea that some serious negative characteristic is associated with a particular group must be avoided.

(4) Particular sensitivity is required where the group in question is generally recognised to encounter prejudice. The kind of humour which may be acceptable in other contexts can seem patronising or demeaning in these cases.

(5) Care is needed with stereotypes of children to avoid the risk of taunting or bullying. Children who are ‘different’ physically or in their behaviour, ability or background must not be presented as unpopular or unsuccessful. Nor should they normally be presented as non-users of a product or service or unworthy of it. Even if an advertisement portrays only adults being stereotyped, an ill-judged stereotype could still be harmful to children (for example, by encouraging bullying).

(6) Experience has shown that well-meaning attempts by commercial advertisers to counter prejudice about, for example, race or disability can sometimes backfire. Appropriate guidance should be sought...


Section 11: Other categories

11.3 CHARITIES

11.3.3 Children

No fund-raising message may be addressed to children or be likely to be of particular interest to them...

11.3.4 Ethical responsibility

Charity advertising must reflect a broad sense of ethical responsibility

Note:

These advertisements should:...

(b) not exaggerate the scale or nature of any social problem

(c) respect the dignity of those on whose behalf an appeal is being made...


For those who are on Facebook, there are Facebook groups protesting both the "Dan" and the "Nicola" adverts, respectively here and here (let me know if those links don't work, i find Facebook can be weird with linking, and am not sure what's only visible to logged in members...)

Saturday, January 24, 2009

Monsters and changelings and charity advertising, oh my

Through the Politics of Autism email list, i was notified today of this new TV advert by the charity Action for Children (formerly the National Children's Home) - an advert which consists essentially of all the worst stereotypes about autistic people all rolled into one in the most blatant form...

For those who can't view the video, it's just under a minute long, and starts with a cartoon monster running through a sped-up, dystopian-looking urban landscape (blurred crowds of people, concrete walls, graffiti, litter, etc). The monster changes shape, but the figure of a small, forlorn-looking child can be clearly seen looking out from inside its mouth. A red line (which seems to represent the charity) takes the monster/child out of the urban landscape and into a green field, looking like typical English countryside with trees in the background - then literally tears the monster into pieces, leaving the child inside "free". The monster re-forms in the grass next to the boy, and starts to rise up - presumably to "eat" him again - but the boy tramples it into the ground. He then walks towards the camera, smiling, while the red line re-appears, twining around him before forming into the words "as long as it takes".

The voiceover, apparently in the voice of the real "Dan" (possibly not his real name*) - it sounds like an adolescent boy's voice, and there is (what sounds to me like, anyway) an "autistic inflection" to his voice - says:

"I used to lash out if something pushed my buttons or I wasn’t able to do something. Things that wound me up were if they’d insulted me I would physically hurt that young person. My parents sought out help with my autism because it was becoming a pain in the bum. I went to an Action for Children school. I started feeling a bit more friendlier with other people. Thanks to the carers I was able to correct a lot of errors in my behaviour and become a better person. Well I feel a lot more confident thanks to them. I feel at peace with myself."

In addition to this, at Action for Children's website there is an image gallery called "Meet Dan", giving another narrative (again transcribed for those unable to view the images):

Hi, I'm Dan.

I thought that autism was like everything else I had. I felt it hard to listen. I was loud, obnoxious and generally bad-tempered.

As the outset of becoming a man came in, it started to get worse and I was just afraid of what was out there, afraid one day I'd leave my parents and I wouldn't be able to survive or anything like that. Survive independently.

And let's put it this way, I wasn't a great brother or son.

My parents found out about this place and I first started off a bit wobbly and well, to say the least, I felt hurt. I felt betrayed by being left there.

I thought no-one really cared. I sat alone in my room and just... I was really upset.

But then after a few months, about a year of being there, got a bit more steadier, started being a bit more friendlier with people.

People have said that Dan you're a lot more respectful, you can be a lot more honest and people have given me their trust, trust to do the right thing and trust to look after something.

My carers and my teacher, I think they're great company, great people. I feel homesick when I'm away from the school. Like part of me has been left there.

I feel a lot more confident now. I'm learning to cook and take care of myself. I feel a lot more at peace with myself.


This narrative is, to me (whether it's genuinely "Dan's" words or not) frankly disturbing. It reads like a narrative of Stockholm syndrome, and like the sort of "self-denunciations" common in totalitarian societies such as Catholic Europe in the time of the witch-burnings, Stalin's Russia or Mao's China. It seems to follow a twisted authoritarian logic in which perfectly understandable feelings about something done to one against one's will are described only so that they can be recanted, as the influence of the "higher authority" has led the person to "see the light" (and/or the "error of their ways"). Feelings of betrayal are trivialised as being "a bit wobbly". Dan's apparent "peace with himself" is reminiscent of Winston Smith at the end of Nineteen Eighty-Four, finally loving Big Brother.

"Dan's" life story is very much like mine, if you were to simplify mine to a similar extent - except that i was not diagnosed in childhood, and - perhaps as a consequence, perhaps not - luckily escaped such "intervention". I had the same fear of never becoming independent from my parents, and i certainly wasn't a "good" brother or son, at least according to how those roles are imposed within the "standard" Western patriarchal nuclear family. "Dan" was betrayed - he was passed like an unwanted buck, sold down the river. I too was betrayed by my parents as an adolescent - which I won't write about in detail here, but probably will eventually, when in more of an autobiographical mood - and left "home" at 16 with practically nothing in terms of either material possessions or life experience - but i did survive independently, because i had to. I could not have done if i had been divided, brainwashed and broken in the way that it looks like "Dan" was.

(And this is not to say that every autistic person, or indeed any non-autistic person, should be forced to "sink or swim" to "live independently", or that people shouldn't get support to learn the skills to live (more) independently, or that all such support is "brainwashing" - there is a profound difference between self-directed support - as Amanda Baggs describes here and here and the kind of "support" that is imposed on a person by others and seems to mainly consist of antagonistically trying to change that person into an entirely different kind of person - also, everyone in a developed society, even someone who lives on hir own and has a self-supporting income, is "dependent on others" - as Baggs points out here...)

*I can't help thinking that the name "Dan" was picked because of one or both of two significant acronyms - the curebie "charity" Destroy Autism Now!, which practices the exact same demonisation of autism and autistic people as portrayed in this advert, or the Disabled People's Direct Action Network - in the former case, "Dan" is the poster child for "anti-autism" intervention, in the second it's the "awful spectre" (a la Communist Manifesto) of disabled people fighting for acceptance and social change - and against charity - that is the "monster" to be defeated.

The imagery of this advertising campaign comes straight from the "changeling" or "demon possession" school of genocidal (by implication, if not necessarily intent) rhetoric - separating "the autism" from the autistic person, and portraying "it" as a separate entity, a "monster" that has "eaten" the child and needs to be destroyed in order to set the child free. This is straight out of horror fiction, and as far from reality as the beliefs in literal demon possession that still persist in some extreme Christian sects (and occasionally make the news when someone dies as a result of an "exorcism"). Portraying "autism" as a separate entity from the autistic person is, just by itself, breathtakingly offensive - saying, effectively, "This is the part of you which is acceptable, and this is the part of you which is unacceptable, and, whether you like it or not, we re going to kill the latter part of you". "Autism" is not some entity separate from autistic people, "it" is autistic people - or rather, it's a name given to a set of characteristics of people that are as inherent to those people as "non-autism" (or "allism") is to non-autistic people. To portray "autism" as a monster is to portray autistic people both as monsters and as passive, helpless "victims" of monsters, simultaneously (though the curebie charities seem to be unable to see that contradiction).

This sort of thing is covered very well at Autism Demonised (which seems to have been abandoned as an ongoing blog, but is still online as an archive), and by Amanda Baggs (again) in posts such as "What not changing us means", so i won't go to too great lengths about it... but, when it has been pointed out so many times, why is it still happening?

The image of the child trapped inside the "autism monster", passively looking out until the charity frees him and "empowers" him to kill the monster (is this promotion of suicide?) also draws on another common and deeply insulting stereotype, that of the child "trapped inside a shell", the idea that there is a non-autistic child somehow "inside" the autistic child and wanting to get out. This particular image tends to get used particularly by advocates of biomedical interventions to "cure" autism (including those who believe autism to be caused by vaccines... which i'm not even going to get into the complete falsehood of here), and again treats "autism" as something somehow separate from the person - as well as assuming that every autistic person really wants to become non-autistic - which is as arrogant and bigoted as assuming that every queer person really wants to become straight, or every black person really wants to become white. As Jim Sinclair wrote in "Don't Mourn For Us":

Autism isn't something a person has, or a "shell" that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence. It is not possible to separate the autism from the person--and if it were possible, the person you'd have left would not be the same person you started with.

This is important, so take a moment to consider it: Autism is a way of being. It is not possible to separate the person from the autism.

Therefore, when parents say,

"I wish my child did not have autism,"

what they're really saying is,

"I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead."

Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces.


Imagery like this, regardless of the (supposed or genuine) benevolence in its intent, says that we do not have the right to exist as the people we are.

One interesting thing is that Action for Children is not an "autism charity", or even a disability charity, per se - their website's "about" page says that they are "committed to helping the most vulnerable children and young people in the UK break through injustice, deprivation and inequality, so they can achieve their full potential", and that they are "the leading UK provider of family and community centres, children's services in rural areas, services for disabled children and their families, and services for young people leaving care." Their residential schools for autistic children are only one of several projects they have for children variously classified as "vulnerable". Yet, despite autism not being their central concern, they have picked up this narrative of autism from somewhere, and applied it unquestioningly, seemingly seeing it as entirely unproblematic.

This implies that the underlying values of autism charities which portray autism in this way are not unique to those organisations, but that there is something deeper-rooted in the concept of "charity" itself. I don't have space or time to do a full critique of charity here, but i think it's very telling that even a charity which doesn't have disabled people as its main focus so easily uses imagery that implies fundamentally changing people - without caring if that change is against their will - is not only acceptable but a positive social good - i think that says a lot about the fundamentally authoritarian and "Othering" nature of charity...

I'm gratified that the autism blogosphere has responded to this so quickly - there are already other posts about it at Action for Autism, The Voyage, The New Republic, and probably others - as well as a brilliant cartoon response at Asperger Square 8.

I'm not very good at writing "reasonable"-sounding letters of complaint to charities and the like, but if anyone else wants to i've been informed that the correct email address to send letters of complaint to is supporter.care@actionforchildren.org.uk. The autistic and disability rights movements successfully defeated the "Ransom Notes" ad campaign, which used similarly oppressive and hateful imagery, last year; we can defeat this as well!

Monday, January 19, 2009

Call for papers: Disorderly Conduct

Another awesome-sounding call for papers via FRIDA:

Call for papers: Disorderly Conduct (July 24-26, 2009)

CALL FOR PAPERS
Interdisciplinary Conference
July 24-26, 2009
Wilfrid Laurier University and University of Waterloo
Waterloo, Ontario, Canada

Keynote speaker: Dr. Steven Angelides, Department of Women’s Studies, Monash University

Other featured speakers will be confirmed for the release of the official conference announcement to follow.

DEADLINE FOR SUBMISSIONS: February 27, 2009

The conference, “Disorderly Conduct” will bring together scholars from around the world and from such disciplines as sociology, philosophy, health studies, history, women’s studies, and medicine to explore and problematize the notion of a “disorder”. The conference seeks to bring front-line medical and mental health personnel who treat various “disorders” together with humanities, social science and health and disability studies scholars who work (in one way or another) on theoretical questions related both to specific “disorders” and to the notion of a disorder simpliciter. In workshops and symposia, conference participants will engage questions like the following: What, if any, are the downsides of being diagnosed with a disorder? Does the concept of a disorder provide treatment advantages or disadvantages? Are there other advantanges or disadvantages that it incurs, besides those related to the treatment itself, for those diagnosed with a disorder? Can we reasonably expect to avoid problems of stigmatization and marginalization by turning to a medicalized language of disorder to apprehend and explain embodied difference?

Conference organizers kindly invite submissions from scholars and health (physical and mental) professionals in all disciplines. Abstracts (500 words), papers (2500 words, 20 minute papers for delivery in 30 minute time slots), symposium proposals, workshop proposals, and roundtable discussion proposals will be considered. Proposals for symposia should include the names and affiliations of all participants and their papers or abstracts. Authors submitting abstracts should be prepared to submit final versions of their papers to the conference organizers by June 30.

All submissions will be anonymously reviewed; names should appear only on a cover page, and cover pages should be attached in a separate file. Authors’ names or other identifying information should be removed from the properties of files before submission. Authors should indicate on their title pages if they wish to have their submissions considered for inclusion in the published proceedings of the conference . All submissions should be emailed to both Morgan Holmes at mholmes at wlu dot ca and at Shannon Dea at sjdea at uwaterloo dot ca by midnight February 27, 2009. Authors should expect to know the decision of the program committee by around March 1, 2009.

Authors might consider submitting a proposal concerning one of the following (but should not feel confined by what is merely intended as a suggestive list):

*What relationship (if any) holds between the concepts, diagnosis and treatment of gender identity disorder and disorders of sexual development?

* What lessons should the editors of the inchoate DSM V take from the DSM IV?

* Is old age treated as a disorder? Should it be?

* What role does “big pharma” play in the identification of various disorders?

* Does our current notion of a disorder adequately reflect our understanding of the social determinants of health?

*How can we use the concept of “disorderly conduct” to subvert the use of labelling practices and normative medicine?

Conference organizers are currently seeking federal funding to support this conference. Contingent upon their success, they may be able to financially assist speakers with their travel and accommodations costs.

For more information on “Disorderly Conduct,” see the conference website at http://arts.uwaterloo.ca/~sjdea/.

Wednesday, January 14, 2009

No barriers! No borders! No "last frontiers"!

(This wasn't the post i originally intended to do today - that one was about PA work and its relationship to labour activism and Marxist analyses of wage work, which was actually meant to be done on Sunday, but got... long, and i got distracted by other stuff going on in my life (including getting voted on as a director of my local Centre for Inclusive Living). That post will probably have to wait until some time next week to get finished, as my first board meeting is tomorrow night and i'm away all weekend. Yes, my plan to post as near as i could to every day in January hasn't worked out so well...)

This is (a slightly edited and expanded version of) the email that i just sent to the UK "Politics of Autism" mailing list, in response to this article on the Guardian website, written by a member of that list - "Autism: equality's last frontier":

I don't like this "equality's last frontier" stuff.

There are many, many other people or groups of people still being discriminated against just as much as autistic people are: not only disabled people with impairments other than autism, but also queer/trans/gender variant people, ethnic minorities, asylum seekers, single parents, sex workers, workers in other "looked-down-on" jobs, indeed poor people in general - and almost certainly many other groups that i've forgotten to list, but the point is not to list or attempt to rank who is the "most oppressed", it's that liberation struggles of oppressed people need to have solidarity with one another, not play some sort of zero-sum game or "Oppression Olympics" in which they feel the need to compete with each other or claim that only their own oppression is real and that everyone else's is either not really oppression or has already been overcome, when it really hasn't (calling autism "equality's last frontier", for example, assumes that racism, sexism, homophobia, transphobia, etc have already been "conquered"... to say nothing of the dodginess of the "frontier" metaphor itself, if actually examined... er, imperialism anyone?).

This is a criticism far more of the title than of Nadine's article itself, and i appreciate that article titles are very often not chosen by the actual writers of the articles, so i'm not necessarily assigning Nadine responsibility for it, as it's more likely that it was some Guardian hack with neither knowledge nor interest in autism or any disability issue who chose it. However, i've seen this type of rhetoric used a few times recently (The Advocate magazine cover saying "Gay is the new Black: The Last Great Civil Rights Struggle", for example) and it annoys me enough to feel the need to speak up about it. (Note that if autism is "equality's last frontier", then gay people can't be fighting "the last great civil rights struggle" - to claim one's own group's oppression as "the last" by definition puts it in conflict with other oppressed groups.)

I agree with most of the article itself, but where i think it scores an own goal for the same reason is the bit that says:

"Discrimination on the basis of someone's height, age, race, sexual orientation, accent, social status and disability is against the law: we all innately know that it is morally wrong. If you took a white stick away from a blind person or a wheelchair from someone who could not walk, society would be outraged and rightly so. But autism is an invisible disability and people on the autistic spectrum are subjected to inhumane treatment and are bullied and rejected every day in Britain. It is unacceptable."

Leaving aside that i don't think we (who is "we"?) necessarily *do* "innately know" that discrimination is morally wrong (because i think that's a whole other discussion about what is and isn't "innate", which i'm not verbally coherent enough for right now), people with other disabilities/impairments to autism also get "subjected to inhumane treatment" and "bullied and rejected" all the time in Britain - it may not take exactly the same forms as with autistic people, but IMO it's easy enough to join the dots. (The case of the disabled man who was recently left to die by paramedics in Brighton is one topical example... and one of many, many horrific disability-related news stories in the last month or so that i simply haven't had the time or energy to blog about...)

Yes, there is prejudice against "invisibly" disabled people even within the disability rights movement (i previously mentioned this here), but equally i have encountered a huge, and often totally unexamined, amount of prejudice among some autistic people ("Aspies for Freedom" springs to mind) against non-autistic disabled people, and even against other autistic people who are more visibly "disabled" than themselves (Amanda Baggs has written about this many times, so many in fact that it would take me far too long to link to even the best few examples here - just search her blog for, say, "functioning level" or "aspification").

What i'm essentially saying is that we need solidarity rather than competition between different oppressed groups, and to recognise the autistic rights movement as part of a wider disability rights movement, which in turn is part of an even wider movement for acceptance of all human diversity and an end to all oppression (which was one of the main points of my presentation at last year's Autscape - at which quite a few people on the Politics of Autism email list were present).

(to add, which i didn't put in the original email) I'm still not entirely sure that i properly understand the concept of intersectionality, or if what i talk about when i use the term is exactly the same as what other people talk about when they use the term in anti-oppression discourses (hence my not having a tag for it, altho i do have the tag "linking disparate things together) - but one of the key insights from those discourses for me is that there is a huge difference between simply drawing parallels between different dimensions of oppression (which the point of, when it's done right, is to show that no one oppression can be understood in isolation, but all are interlinked and rooted in related social and thought systems) and drawing comparisons in such a way that the result is competition (the aforementioned "Oppression Olympics"), antagonism or people of one oppressed group claiming that another group's oppression is not as real as their own - which, ultimately, only benefits the oppressors, through the simple principle of "divide and conquer".

(some discussion on these topics here... another relevant post here)

For example, prejudice against physically impaired people among neurodiverse-but-able-bodied people and prejudice against neurodiverse people among physically-impaired-but-neurotypical people (both of which i've encountered, including among activist/advocacy groups) both ultimately only benefit the disablist system by pitting different groups of disabled people against each other... while people with both physical and mental/neurological impairments get completely screwed over by both "sides" of the disability community, in addition to already being the group of disabled people most likely to suffer the worst aspects of disablist oppression (institutionalisation, abuse from "carers", denial of access to communication, homelessness, extreme poverty, extreme social isolation, and death from easily preventable diseases) - likewise, things like the whole recent mess over California Proposition 8, in which black people were blamed for homophobia and subjected to racist abuse by queer white people, or similar past polarisations over (for example) homophobic lyrics and interview statements by reggae and hip-hop artists, only result in queer people of colour being excluded, alienated and hated from both sides, while suffering by far the highest rates of poverty, homelessness, HIV infection, and physical attacks up to and including rape and murder. The antagonism between transsexual and genderqueer people discussed here is yet another example.

There is some genuinely great stuff going on in various places around intersections of different oppressions - one of the best examples i know of that people i know are involved in, from which i took the title for this post, is No Barriers, No Borders, a group of disabled asylum seekers and refugees, based in Sheffield


(unfortunately i couldn't find the actual report - credit to my awesome friend Clair for the picture)

- but it is still deeply frustrating to see different, or often not-all-that-different, groups of oppressed people fighting it out over who is the most oppressed or claiming that everyone else has nothing left to complain about and theirs is the only remaining "true" oppression. We need to break down all the barriers and "frontiers" between us, because only then can we rise up together...

Thursday, January 8, 2009

Pleasure, accessibility and privilege

This post at Cripchick's blog got me thinking recently about leisure activities, impairment, embodiment and privilege...

A central idea of the social model of disability is that it's not impairments or bodily differences that disable people, but physical and/or attitudinal barriers, which are humanly created and therefore humanly changeable - thus taking disability out of the realm of individual tragedy or immutable biological fact, to be accepted rather than fought against, and into the realm of the social and therefore collectively changeable - to borrow a feminist slogan, "anatomy is not destiny".

But, of course, this is an over-simplification of the truth, and one which, if taken unquestioningly as fact with no possibility for exception or argument, leads to a straw man which is more likely to alienate many disabled people than convince them, because it fails to acknowledge the embodied reality of impairment. (lilwatchergirl recently posted about this, referencing probably the definitive essay on the subject, Liz Crow's "Including All Of Our Lives: Renewing The Social Model Of Disability" (free PDF available here) - also recommended is the chapter on the subject in Jenny Morris's Pride Against Prejudice.) Some environmental barriers are not human, but natural in origin (such as the current below-zero weather in England - there's nothing that the DDA or activism can do about that!), while some activities are by their very nature inaccessible to people with certain impairments. This last is an uncomfortable truth which many in the disability rights movement - myself included - hesitate before saying - but it is very difficult to deny that it is truth - Elizabeth's most recent post being a powerful example.

Several of the "leisure" activities that i get most sensual enjoyment from are arguably inherently problematic in that respect. When the weather is tolerable for me, i absolutely love walking for hours in the countryside (which admittedly there isn't very much of within easy reach of where i live right now - having it within walking distance is one of the things i miss most about the small town i used to live in), and get an undeniable pleasure from the physical act of stretching my legs, scrambling up the slope of a hill, using the energy of my body in a way that makes me feel tired and possibly a bit sore, but somehow pleasurably so, afterwards... and in seeing the view from the top of the hill, the colours of water and trees, the curves of the landscape and the wild birds and mammals i catch glimpses of - but, to many of my closest friends with physical and/or visual impairments, this is inherently accessible. I love taking photos of landscapes and wildlife - but no matter how good the verbal description of the photo, i struggle to imagine a visually impaired person getting the same pleasure from reading them described as i do from viewing them.

Music and dancing are so important to me that their importance is almost spiritual in its intensity (in fact, the overwhelming spiritual power that music and dance has for me is the primary reason that i took on the online identity of Shiva Nataraja... and, yes, i still need to blog in detail about that) - but what, then, of those whose impairments mean they cannot hear music or move their bodies in dance? Yes, i know that there are such things as deaf raves and - of course - wheelchair dancers - but when i think of the very specific pleasures that i experience from hearing music and from dancing - the almost out-of-body ecstatic possession that certain nuances of sound can produce in me (too lazy right now to link examples, and i know music taste is such a personal, individual thing that probably no one else will feel it the same as me), and the ecstasy of dancing while "possessed" by the music, right to and amazingly somehow past the point of physical exhaustion - i can't help thinking that those pleasures are profoundly and inherently inaccessible to people with many impairments...

(I am writing this right now while listening to Lee Perry, and in between bouts of dancing maniacally around my living room...)

This gets me thinking, somewhat uncomfortably, about privilege - the privilege that i, as a disabled but not physically impaired person, have over physically impaired disabled people (and, yes, there is probably also privilege that physically impaired but neurotypical people have over me - one of the things with intersectionality is that it's perfectly possible for person A to have (some forms of) privilege over person B while person B simultaneously has (other forms of) privilege over person A), and the ethics of my publicly enjoying the pleasures of that privilege. A part of me feels that this is a category error, that privilege is social, not natural, and that it isn't right for a difference in physical embodiment to be regarded as a privilege, but a part of me strongly disagrees with that, thinking that that argument conflates the just and the "natural", which isn't in any way logically sustainable... are the facts that (cissexual) men are on average physically stronger than women (which of course is not to say that any given individual man is stronger than any given individual woman) and that (cissexual) men don't have to worry about unwanted pregnancies parts of male privilege? if so, does the fact that women have longer life expectancy and less risk of things like high blood pressure than men mean that there is also female privilege? if all privilege is unjust, and these differences constitute privilege, meaning that, logically, therefore it's unjust for these differences to exist, does it mean that the existence of impairment is an injustice? in that case, does that lead to the position that curing or eliminating impairment is a moral imperative - which, of course, is one that most disability rights activists, including myself, generally vehemently oppose?

(Damn. This blog post is spinning off into much bigger questions than i intended it to...)

When i went out with my physically impaired ex-partner, i felt bad that she couldn't participate in the wild, energetic dancing that is such an important part of the live music experience for me. I'm currently thinking about organising a hiking holiday in the Yorkshire Dales with a couple of friends (both of whom incidentally also have impairments, including one with a physical impairment, though ze's capable of walking long distances) - but nearly all of my other close friends would find that holiday fundamentally inaccessible, meaning i can't invite them. Is this fair? Should i not have that holiday because of it? I don't know.

Laura Hershey (thanks to Cripchick for the link!) has written about hiking trails in a wheelchair, in which she argues tentatively that that, for her, might involve physical pleasures that "able-bodied people" (her phrase) do not experience, and Wheelchair Dancer has written similar things about the uniqueness of disabled dance - here and here are examples, tho there are probably better ones - i couldn't find the specific post i thought i remembered (I'm also reminded of what the late Harriet McBryde Johnson wrote about pleasure, quoted by Amanda Baggs here.) Does this ultimately come down to the irreducible specificity of the experiences of every individual - the fact that one person's pleasures (and displeasures) will never be exactly the same as another's? Does it matter ethically that some pleasures are inaccessible to some people? Again, i don't know.

(There are very probably pleasures of non-verbal social interaction that are inherently inaccessible to me... but then, there may also be pleasures of hyperfocus or total immersion in the subject of a perseveration that are inherently inaccessible to neurotypicals...)

I suppose one of the things this boils down to is the truth that, while there undoubtedly are things that can be done to make almost everything more accessible (subtitles or audio description in films, physical access to clubs/music venues, paving outdoor trails and putting in accessible toilets, creating norms of social interaction which do not rely so heavily on the assumption that everyone understands nonverbal communication, etc), there are some things that will never be accessible to some people, some impairment effects that cannot be mitigated by social change... or is this a truth? Even though it seems logically true, i feel uncomfortable about it - part of me feels like i am a traitor to the social model for saying it, or that, even if true, it mustn't be said because, if said, it will lead to abandonment and denunciation of the social model (like that in Tom Shakespeare's most recent book, Disability Rights And Wrongs)... Liz Crow makes a pretty convincing argument to the contrary, but it doesn't stop me feeling a deep ambiguity around such issues (I often feel like i'm on both sides, arguing the "simplified version" of the social model to non-disabled people in other activist scenes, while equally passionately arguing the Liz Crow line to the frustratingly "old-school" social modelists in the UK disability movement who sometimes seem not to acknowledge impairment/embodiment at all)...

I don't really have a conclusion for this post. It's late and my train of thought has splintered into far too many directions. But i would be very intrigued to hear other people's thoughts on this...

Tuesday, January 6, 2009

Inclusion "in the mainstream" - whose mainstream?

This recent post at Dave Hingsburger's blog Chewing The Fat raised a lot of thoughts for me about "disability culture" as a potentially self-segregating or isolationist entity versus "inclusion in the mainstream" and its problematic nature when the culture of "the mainstream" itself can be a profoundly disablist culture. I commented there, but realised my thoughts on the issue were too wide-ranging to express properly in a comment, hence this post.

The issues raised in the letter to Dave from the mother of a young man with Down's syndrome, who was "included in the mainstream" all his life, but marginalised and excluded from social life due to the disablist attitudes of the mainstream, and who then found friendship and community with other disabled people when his mother took him to a segregated event for disabled young people, are issues that i touched on previously in this post (which i intended to reply to the comments to, but didn't because, coincidentally, a lot of shit happened to some offline friends which took my attention away from blogging for a while). (As i said on Dave's comment thread, i would like to hear Cory's own words/thoughts, rather than just his mother's, on the situation.)

Two questions mainly seem to stand out for me: firstly, the question of how much agency Cory had in the matter - from his mother's description, it isn't clear whether he ever asked her (or anyone else) if she would take him to any disability-specific events, or said that he wanted to meet other disabled young people. He appears passive in the story - his mother and grandfather "brought" him to the New Year's dance (as opposed to "he went" to it). Related is the fact that the dance was held by a service organization, meaning that, presumably, it was non-disabled professionals rather than disabled people themselves who organised it. There is a huge difference between "disability culture" created by disabled people - such as for example the music, theatre and visual arts scenes showcased at DaDaFest - and events or spaces created by non-disabled people in the charity sector (or the "non-profit industrial complex") "for" disabled people - the latter can justifiably be called segregation, but Janet seemingly conflates the two.

Secondly, the question of where the attitudes among "mainstream" young people that led to Cory's ostracism - the attitudes i described my experience of in the "Homecoming Queen" post - came from. I really don't know the answer to this - i can only describe, not explain, it. There is a part of me that wonders, somewhat pessimistically, if a certain level of disablism is actually "hard-wired" into the neurotypical psyche - in particular with regard to cognitive and behavioural differences, which, as Phosphene in the comments notes, seem to attract a deeper level of prejudice than physical differences. (I know quite a few physically impaired people who went to "mainstream" schools, and, while they often had struggles to get physical access needs met, they generally had mostly positive social experiences, with close friends and, to a greater or lesser extent (often also affected by physical access issues) inclusion in the "mainstream" social scene of their age peers (or, at least, the "alternative"-but-actually-fairly-mainstream scenes, such as the "indie-boy/girl", goth or punk scenes), whereas nearly all the neurodiverse or cognitively impaired people i know who went to mainstream schools were extremely marginalised there... other people's experiences may vary, of course...)

I would like to hope that such attitudes aren't "hard-wired", so much as cultural, but i don't know. I do know that having seen them first-hand makes me feel that the visions of full inclusion in "mainstream" education by authors such as Micheline Mason in Incurably Human (an author i massively respect and a book i love, btw) are unrealistically utopian (an aside here is that the examples of successful educational inclusion Mason gives in that book are, notably, at primary age/level, and that Cory's inclusion was likewise successful in primary school, but things changed when he went to secondary school - suggesting perhaps that something changes at puberty). And that leads to examining my conflicted feelings about the education system in general - on the one hand, i wholeheartedly believe that "special" schools are an utterly unacceptable form of segregation, and that there absolutely has to be an equal right to education for every child, but on the other hand, i have deep critiques of the whole school system, such that things like unschooling appeal to me, and therefore find the idea of all kids being in "mainstream" schools also problematic. (I know Amanda Baggs has said something similar, but couldn't find the exact post she said it in...) My mixed feelings about Micah Fialka-Feldman's desire to be included in "mainstream" campus accommodation at his college probably come from very similar roots (i do intend to write about that case more specifically soon).

In a very similar conversation at an action planning gathering the other night at my employer's house, another autistic activist made the point in response to a statement in a press release we were drafting that "Independent Living must be regarded as the right to full participation in the cultural mainstream of society", that he and many other neurodiverse people did not want to be in "the cultural mainstream of society" - which I fully agree with, if "the cultural mainstream of society" means things like listening to the shite in the top 40 of the music charts, eating brand-name processed food from supermarkets, wearing "designer" clothing, watching soap operas or the racist, disablist, misogynistic (etc) trash churned out by Hollywood studios, treating a sports team as a religion and threatening violence against the supporters of other teams, going to nightclubs with classist dress codes and gendered, objectifying charging policies, etc... but then, anyone could pick a different list of the things that they dislike about "mainstream culture", and precisely because what "mainstream culture" is is so undefined, diatribes against it are as likely to come from conservatives or fascists as they are from radicals - and the list of things above is probably precisely the list of things that many disabled people actually do want, and which it's their right to want (this recent discussion of LGBT black people in the US not identifying with the subversiveness of the term "queer" is an interesting comparison).

(The sentence was changed to "Independent Living must be regarded as the right to full participation in the cultural or social activities that disabled people choose to perform, which are not carried out inside segregated or institutionalised settings.")

There needs to be a better definition of what is actually meant by "mainstream society". When used as a negative term (by radicals), it generally means the hegemonic aspects of capitalist, patriarchal (etc) culture that result in the exclusion and/or oppression of those who don't fit into it; when used in discussions of inclusion and independent living by disability advocates/activists, however, it's generally the opposite of paternalistic segregated settings, and "participation in the mainstream of society" is used to denote an envisioned society where disabled people are not excluded, marginalised, "Othered" or stereotyped.

The problem is, those definitions don't match; in what currently constitutes "mainstream society", disabled people are excluded, marginalised, "Othered" and stereotyped. For disabled people to be truly "included in the mainstream", there has to be radical transformation of the "mainstream" itself - to the extent, in fact, that true inclusion of disabled people, including those with neurological, psychological, etc, as well as physical impairments, arguably would actually transform the "mainstream" beyond recognition. With intersectionality of all other oppressions, and the argument that no one minority or oppressed group is liberated until all are liberated, even greater transformation becomes necessary - the end of restrictive gender roles, of the inherently racist and imperialist world economic systems that define so much of consumer culture, and so much more.

I think the demand for "inclusion in the mainstream of society" stems partly from the desire for desegregation and equal rights, but also partly from something more problematic; a human tendency to desire "normality", and to conflate equality with "being the same" or "wanting to be just like everyone else" - a desire which can very easily lead to denial of difference, exhausting struggles to "pass" as non-disabled, envy of non-disabled people, and self-denial/self-hatred - or conversely to alienation from the whole idea of inclusion and/or integration, and a desire for a totally isolationist "disability community", which in turn can alienate non-disabled potential allies (such as members of other oppressed and marginalised communities - similar, if not identical, tensions operate very visibly in the queer/LGBT communities).

Anyway, there's more i probably wanted to say, but i'm going to leave this post here, because one of my new year's resolutions for 2009 was to blog more often, which, for me, means shorter posts and trying not to feel so much like my every post needs to be completely comprehensive and the "last word" on a subject. Yes, my first post of 2009 was originally intended to be something along the lines of "2008 in review"... but that proved somewhat overly depressing, for now anyway. I don't promise there will be a new post every day, but i am intending to post all the days that i can in January/February...