Well, today i gave my presentation...
I think it actually went surprisingly well. The time slot allotted was 1 1/2 hours, and i started a bit late as i was waiting for people to come in, but the room soon filled up - the majority of people there were interested. I thought my talk would take 20-30 minutes, and it ended up taking over an hour, partly because of questions and interruptions (coughLaurentiuscough ;) ) and partly because of me going a bit rambly and remembering things i needed to say that i had forgotten to include on the handout.
I didn't conclude as conclusively as i wanted to, but then, that's always a problem for me (as those who read this blog may well have noticed). My conclusion was essentially that there is a need and a place for impairment-specific groups and organising, but that impairment-specific groups need to recognise that they are part of a wider disability movement (and an even wider pro-diversity/anti-discrimination movement).
The discussion afterwards, although shorter than i wanted it to be, was also really good. I was surprised and flattered by the several people who told me how good they thought my presentation was - i was really nervous at first, but presenting to an autistic audience massively helped - i knew i wouldn't be judged for the little style things that a predominantly NT audience would probably have judged it negatively for, like sitting down and standing up again multiple times while speaking, pausing/trailing off a few times to shuffle my notes, having to run out halfway through to get a glass of water because my throat was so dried out from talking loud enough for a room full of people to hear me, frequently not looking at the audience, etc...
I think i actually managed to influence a few people's views in favour of the social model of disability, which is very very cool :)
It was pretty knackering, though (and my throat is now feeling raw)... but, i am kind of elated...
There's a discussion on alternative sexualities later this evening, which sounds awesome. Have met one trans person and several people in poly relationships here.
Pissed down with rain today, but the scenery is still inspiring. Swifts and swallows flying around in massive flocks all over the place.
Mozart and the Whale was... interesting, but i'm not sure if either of the leads came across as genuinely Aspie-like to me. More coherent thoughts on it in a future post (probably).
Off to collapse for an hour or so now...
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Thursday, July 31, 2008
Sunday, July 27, 2008
My presentation for Autscape
I thought people who read this blog might be interested in the presentation that I am giving at Autscape on Thursday...
I haven't decided exactly what I am going to say yet, but this is a loose outline. It's more intended as a handout for people who want to come to the presentation (hence the links, intended as stuff to look at if people want to look further into the topics touched on), and i'm going to start by talking a bit more generally about the disability rights movement, ascertaining how much the people there know about it.
Then, after talking for a bit, i'm going to turn it into a discussion (i decided to do a bit of a "hybrid" between a lecture-style presentation and a semi-presenter-led discussion). Hopefully some interesting and challenging views will come out of it...
(I was meant to finish this about a week ago, but only just finished it. I'm off tomorrow morning, to see some friends in Manchester, who i'm staying over with tomorrow night, then going from there to Autscape on Tuesday...)
Anyway, here it is (links ain't hyperlinks cos it's a printed document):
The Social Model of Disability is a major part of the ideological groundwork of the disability rights movement. Put simply, the Social Model states that there is a difference between impairment (a physical or psychological difference from the human "norm" - e.g. autism, deafness, blindness, a missing or paralysed limb) and disability (the social disadvantage experienced by people with impairments). Thus, according to the Social Model, people are not "disabled" by having an impairment, but by society's failure to accommodate the different access needs that they have as a result of having an impairment. "Disability is injustice, not tragedy; unequal treatment, not inherent inequality" - Cal Montgomery, "Critic Of The Dawn" in Ragged Edge Magazine, http://www.raggededgemagazine.com/0501/0501cov.htm
(There are debates about whether the Social Model, stated simply, ignores the reality of impairments and/or regards them as irrelevant, and if this is a bad thing or not. These are beyond the scope of this short presentation, but recommended reading is Liz Crow's essay "Including All Of Our Lives: Renewing The Social Model Of Disability", which can be found in the book "Encounters With Strangers: Feminism and Disability", edited by Jenny Morris, or at http://www.disability-archive.leeds.ac.uk/authors_list.asp?AuthorID=49&author_name=Crow%2C+Liz)
It is easy to see how the Social Model applies with regard to people with physical impairments - a wheelchair user is disabled by steps into buildings, tables at heights that hir wheelchair cannot get under, etc. But how well does it apply to autism? The accommodations needed not to disable autistic people may be subtler or less obvious - e.g. changing assumptions about verbal and non-verbal communication, what constitutes "rudeness" or "politeness", etc. Autscape badges are arguably an example.
Experiences of autistics within the Disability Rights Movement: has the Disability Rights Movement accepted and accommodated autistic people?
Some autistics (along with other people with "hidden" impairments/disabilities) have felt alienated by the Disability Rights Movement, claiming that it has been mainly focused on the needs and rights of people with physical impairments, and that those with other types of impairments have been neglected or even not regarded as a valid part of the movement. An example of this is Sarah Triano's account of her experience at a national ADAPT action: http://www.disabledandproud.com/movement.htm (scroll down to the section titled "AN ALIEN WITHIN MY OWN COMMUNITY"). See also the experiences of Cal Montgomery (who is both autistic and physically impaired) with her local CIL in this article: http://www.ragged-edge-mag.com/reviews/ckmontfoucault0905.html
Some argue that there is a "hierarchy of impairment" within the DRM - with either some impairments being regarded as "more disabling" than others, and thus people with those other impairments as "not really disabled", or people with physical impairments being regarded as capable of self-organising, whereas people with mental impairments are regarded as incapable of self-organising, and thus not deserving of a place in the disability movement. However, writers and activists such as Cal Montgomery and Amanda Baggs have challenged this, with a lot of success, and many people with neurodiverse impairments have played major roles in the disability movement (for example in DAN).
Disability (as a term) and the Autistic Rights Movement: There have been mixed attitudes in the autistic rights/autism acceptance/ neurodiversity/etc. movements towards the term "disability" and towards associating with non-autistic disabled people and their struggles. Some have enthusiastically embraced the social model of disability and considered themselves to be a part of a pan-impairment disability rights movement, while others have tried to argue that autism "is not a disability". For a very good example of this debate, see the following blog posts:
Welcome to the Disability Community by Joel Smith: http://thiswayoflife.org/blog/?p=287
This post is mainly for three sorts of people... by Amanda Baggs (Ballastexistenz): http://ballastexistenz.autistics.org/?p=480
Not just about barriers by ABFH: http://autisticbfh.blogspot.com/2008/01/not-just-about-barriers.html
Is this based on ignorance or misunderstanding of the social model, and the difference between impairment and disability? Parallels with the Deaf movement, many of whom see themselves not as "disabled" but as a "linguistic minority"?
(Disability activist blogger Kay Olson (http://thegimpparade.blogspot.com) said, in a comment on my blog post asking for input for this presentation, "This is where I think the disability rights movement could often gain from being understood or more explicitly promoted as a "difference" rights movement.")
Is there a role for impairment-specific organisations within the disability movement?
Many activists within the disability rights movement have argued against impairment-specific organisations, saying that the DRM should cover disabled people of all impairments, and that impairment-specific groups go against the social model, by dividing disabled people against each other by impairment groups, as charities (e.g. RNIB, RNID, Scope (formerly Spastics Society), Autism Speaks, etc.) and the medical establishment do.
However, according to the principle of "Nothing About Us Without Us", if there are specific issues relating to a particular impairment (which might not affect other categories of disabled people), then people with that impairment have the right to self-organise to deal with those issues. Disability activists who are physically impaired but neurotypical, for example, may not recognise some of the issues faced by autistic people (but also vice versa).
My blog (Biodiverse Resistance): http://biodiverseresistance.blogspot.com
Some notable autistic blogs:
Ballastexistenz (Amanda Baggs): http://ballastexistenz.autistics.org
This Way Of Life (Joel Smith): http://thiswayoflife.org/blog
Asperger Square 8 (Bev Harper): http://aspergersquare8.blogspot.com
The Autistic Bitch From Hell (Whose Planet Is It Anyway?): http://autisticbfh.blogspot.com
Some other notable disability blogs:
Chewing The Fat (Dave Hingsburger): http://davehingsburger.blogspot.com
Crip Power (Miss Crip Chick's Blog): http://crip-power.com
The Gimp Parade (Kay Olson): http://thegimpparade.blogspot.com
F.R.I.D.A. (Feminist Response In Disability Activism): http://fridanow.blogspot.com
I haven't decided exactly what I am going to say yet, but this is a loose outline. It's more intended as a handout for people who want to come to the presentation (hence the links, intended as stuff to look at if people want to look further into the topics touched on), and i'm going to start by talking a bit more generally about the disability rights movement, ascertaining how much the people there know about it.
Then, after talking for a bit, i'm going to turn it into a discussion (i decided to do a bit of a "hybrid" between a lecture-style presentation and a semi-presenter-led discussion). Hopefully some interesting and challenging views will come out of it...
(I was meant to finish this about a week ago, but only just finished it. I'm off tomorrow morning, to see some friends in Manchester, who i'm staying over with tomorrow night, then going from there to Autscape on Tuesday...)
Anyway, here it is (links ain't hyperlinks cos it's a printed document):
The Social Model of Disability is a major part of the ideological groundwork of the disability rights movement. Put simply, the Social Model states that there is a difference between impairment (a physical or psychological difference from the human "norm" - e.g. autism, deafness, blindness, a missing or paralysed limb) and disability (the social disadvantage experienced by people with impairments). Thus, according to the Social Model, people are not "disabled" by having an impairment, but by society's failure to accommodate the different access needs that they have as a result of having an impairment. "Disability is injustice, not tragedy; unequal treatment, not inherent inequality" - Cal Montgomery, "Critic Of The Dawn" in Ragged Edge Magazine, http://www.raggededgemagazine.com/0501/0501cov.htm
(There are debates about whether the Social Model, stated simply, ignores the reality of impairments and/or regards them as irrelevant, and if this is a bad thing or not. These are beyond the scope of this short presentation, but recommended reading is Liz Crow's essay "Including All Of Our Lives: Renewing The Social Model Of Disability", which can be found in the book "Encounters With Strangers: Feminism and Disability", edited by Jenny Morris, or at http://www.disability-archive.leeds.ac.uk/authors_list.asp?AuthorID=49&author_name=Crow%2C+Liz)
It is easy to see how the Social Model applies with regard to people with physical impairments - a wheelchair user is disabled by steps into buildings, tables at heights that hir wheelchair cannot get under, etc. But how well does it apply to autism? The accommodations needed not to disable autistic people may be subtler or less obvious - e.g. changing assumptions about verbal and non-verbal communication, what constitutes "rudeness" or "politeness", etc. Autscape badges are arguably an example.
Experiences of autistics within the Disability Rights Movement: has the Disability Rights Movement accepted and accommodated autistic people?
Some autistics (along with other people with "hidden" impairments/disabilities) have felt alienated by the Disability Rights Movement, claiming that it has been mainly focused on the needs and rights of people with physical impairments, and that those with other types of impairments have been neglected or even not regarded as a valid part of the movement. An example of this is Sarah Triano's account of her experience at a national ADAPT action: http://www.disabledandproud.com/movement.htm (scroll down to the section titled "AN ALIEN WITHIN MY OWN COMMUNITY"). See also the experiences of Cal Montgomery (who is both autistic and physically impaired) with her local CIL in this article: http://www.ragged-edge-mag.com/reviews/ckmontfoucault0905.html
Some argue that there is a "hierarchy of impairment" within the DRM - with either some impairments being regarded as "more disabling" than others, and thus people with those other impairments as "not really disabled", or people with physical impairments being regarded as capable of self-organising, whereas people with mental impairments are regarded as incapable of self-organising, and thus not deserving of a place in the disability movement. However, writers and activists such as Cal Montgomery and Amanda Baggs have challenged this, with a lot of success, and many people with neurodiverse impairments have played major roles in the disability movement (for example in DAN).
Disability (as a term) and the Autistic Rights Movement: There have been mixed attitudes in the autistic rights/autism acceptance/ neurodiversity/etc. movements towards the term "disability" and towards associating with non-autistic disabled people and their struggles. Some have enthusiastically embraced the social model of disability and considered themselves to be a part of a pan-impairment disability rights movement, while others have tried to argue that autism "is not a disability". For a very good example of this debate, see the following blog posts:
Welcome to the Disability Community by Joel Smith: http://thiswayoflife.org/blog/?p=287
This post is mainly for three sorts of people... by Amanda Baggs (Ballastexistenz): http://ballastexistenz.autistics.org/?p=480
Not just about barriers by ABFH: http://autisticbfh.blogspot.com/2008/01/not-just-about-barriers.html
Is this based on ignorance or misunderstanding of the social model, and the difference between impairment and disability? Parallels with the Deaf movement, many of whom see themselves not as "disabled" but as a "linguistic minority"?
(Disability activist blogger Kay Olson (http://thegimpparade.blogspot.com) said, in a comment on my blog post asking for input for this presentation, "This is where I think the disability rights movement could often gain from being understood or more explicitly promoted as a "difference" rights movement.")
Is there a role for impairment-specific organisations within the disability movement?
Many activists within the disability rights movement have argued against impairment-specific organisations, saying that the DRM should cover disabled people of all impairments, and that impairment-specific groups go against the social model, by dividing disabled people against each other by impairment groups, as charities (e.g. RNIB, RNID, Scope (formerly Spastics Society), Autism Speaks, etc.) and the medical establishment do.
However, according to the principle of "Nothing About Us Without Us", if there are specific issues relating to a particular impairment (which might not affect other categories of disabled people), then people with that impairment have the right to self-organise to deal with those issues. Disability activists who are physically impaired but neurotypical, for example, may not recognise some of the issues faced by autistic people (but also vice versa).
My blog (Biodiverse Resistance): http://biodiverseresistance.blogspot.com
Some notable autistic blogs:
Ballastexistenz (Amanda Baggs): http://ballastexistenz.autistics.org
This Way Of Life (Joel Smith): http://thiswayoflife.org/blog
Asperger Square 8 (Bev Harper): http://aspergersquare8.blogspot.com
The Autistic Bitch From Hell (Whose Planet Is It Anyway?): http://autisticbfh.blogspot.com
Some other notable disability blogs:
Chewing The Fat (Dave Hingsburger): http://davehingsburger.blogspot.com
Crip Power (Miss Crip Chick's Blog): http://crip-power.com
The Gimp Parade (Kay Olson): http://thegimpparade.blogspot.com
F.R.I.D.A. (Feminist Response In Disability Activism): http://fridanow.blogspot.com
Sunday, July 20, 2008
My Libertarian Ethics
I am writing this because I realised it would be relevant to several of the posts I am currently planning to write, and it would make it somewhat easier to write them if, instead of explaining basically the same ethical position in each one, I could just link back to this...
Libertarianism is my most basic and fundamental ethical and political principle - it is what underlies pretty much all my other principles. I am an anti-capitalist, a feminist, a believer in the social model of disability (there needs to be a snappy word for that - social-modellist?), etc., because I am a libertarian, and not vice versa.
Unfortunately, the word “libertarianism”, particularly in English-speaking countries, has been grossly distorted in meaning in its commonest usages - hence my need to explain here what it means to me...
“Libertarianism” has seemingly come to mean a sort of amoral, social-Darwinist style of extreme free-market capitalism, based around a belief that “free trade” (something which I actually believe is an oxymoron, at least when using the word “trade” as it is generally used in an economic context) is the only ethically acceptable way to run an economy. However, this isn't the word's original meaning - according to Wikipedia, the term was coined by the French anarcho-communist Joseph Dejacque in a letter to Pierre-Joseph Proudhon, although other sources say it was first used by Proudhon himself. At any rate, the original (and still mostly current in Europe) usage of the term as a self-description was by anti-capitalists, and the “default” libertarian position was and is the one which needs a qualifier as “left-libertarian” or “libertarian communist/socialist” in the UK and US.
Libertarianism, as far as I am concerned, means a political philosophy which holds freedom from coercion as its primary value, the value which all other values derive from. Thus, as far as I am concerned, a libertarian must be a feminist, because all of the key feminist issues, as far as I can tell, revolve around women lacking and deserving the freedom to control their own lives and their own bodies, and fighting for liberation from a restrictive system of patriarchal family and relationship structures and gender roles. Similarly, as far as I am concerned, a libertarian must be an anti-capitalist, because capitalism is fundamentally incompatible with liberty - as exchange-value, the most fundamental component of capitalist economics, needs some form of authority to define and regulate it, and the capitalist wage-labour system could not exist without coercion (at least in its negative form of threats, e.g. of poverty for not working). (I will expand on this particular topic in a future post, because it's hugely controversial to say the least, and I think it deserves a post to itself.)
As Wikipedia notes, “Libertarian is an antonym of authoritarian” - i.e., it is not, despite the popular understanding in the English-speaking world, an antonym of “socialist”. In fact, as far as I am concerned, the only true socialist is a libertarian, and the only true libertarian is a socialist (which is a pretty good working definition of an anarchist).
(As an aside here, I have become convinced that the disabled people's liberation movement is quite possibly the one movement which holds the key to unifying libertarianism and socialism in such a way as to resolve some of the apparent contradictions in present left-libertarian thought, because it is quite possibly the only movement which is necessarily both libertarian and socialist. This, however, I also intend to expand on in a future post...)
My libertarian ethic basically boils down to this: no person has the right to forcibly prevent any other person from carrying out any action which harms no person other than the person doing it - or, to use a slightly more elegant phrase, “Do as thou wilt, an it harm none”. (OK, I'm not so into the mysticism... well, OK, sometimes...)
One corollary of this is that, as far as I am concerned, no moral judgement is possible of self-regarding actions - what X does to X is no one's business but X's. Of course, it can be convincingly argued that there is no such thing, in reality, as a wholly “self-regarding” action - but, still, I think that, in most everyday situations, the distinction between self-regarding and other-regarding actions is fairly robust and fairly obvious.
Going a bit further, when it comes to other-regarding actions, as far as I am concerned, if all parties in any interaction are fully and freely consenting to that interaction, then no ethical wrong has been done. (Sure, there are plenty of things that 2 or more people can do to each other that I find deeply repellent, but squick does not morality make.) Thus, even one person killing another person might not be morally wrong, because there are situations in which people consent to their own deaths - and I support an inalienable right to suicide, despite the fact that I agree that “we shouldn't be offering assistance with suicide until people can get the assistance they need to get up in the morning”. (if anyone can find me the source of that quote, I'd be very grateful...)
It follows that my definition of “harming someone” isn't necessarily the same as the one generally accepted in mainstream society (and certainly not the same as that held by most medical professional types). As far as I am concerned, “harm” is not defined by material damage to a person, but by antithesis to that person's will – a person is harmed by having something happen to them that they don't want to happen. Thus, while performing bottom surgery on a trans person could certainly be considered “harm” by a purely material definition (a lot of pain, a lot of tissue damage, the loss of organs, a lot of energy needed to recover) – and if the person is transitioning from male to female in a patriarchal society, it will probably do social and economic “harm” as well – it's not harming that person, because it's what that person wants – whereas denying them that surgery emphatically is harming them.
Similarly, while I consider myself to be fundamentally anti-violence, my definition of “violence” isn't necessarily the same as the standard one. I define “violence” as the violation of a person's will, the imposition of something unwanted on a person (whether that something is material harm or anything else), or the prevention of that person from having choice or agency in what happens to hir. This means that consensual BDSM, even if it involves typically “violent” acts such as beatings, isn't violent, whereas, for example, forcing someone to live in a “nursing home”, where they are denied agency over things as basic as what and when they eat, if and when they can leave the house, and even when they can go to the toilet most definitely is.
(I have seen libertarians use different definitions of violence - for instance, while this is an awesome article, its use of the phrase “consensual sexual violence” is, IMO, unfortunate, because according to my definition of “violence” it's an oxymoron... however, I think my use of the word is the only consistent libertarian one which can keep the sense of “violence” being an inherently bad thing...)
(I can't consider myself a pacifist, in the strict sense of that word, because I do believe that, sometimes, a particular act of violence is necessary to prevent greater violence, and I also believe in the legitimacy of self-defence. Strangely enough, it was actually the abortion issue which led me to stop defining myself as a pacifist - when I did consider myself a pacifist (while I was still a Christian, but on my way into anarchism), I had to take an anti-abortion viewpoint, because I believed that - at least after a certain stage - a foetus was a person, and killing it was therefore violence against a person. The argument that it only becomes a person at birth didn't really work for me, because I fail to see a meaningful difference between a baby outside the womb and that same baby a few minutes earlier inside the womb. Realising that violence against a person can be necessary to prevent a greater violence (in this case, forcing the mother to go through pregnancy and labour against her will) resolved my feminism versus anti-violence problem for me...)
One question I have to ask myself is whether, and if so how, my libertarian morality has any connection to my autistic neurology. I believe that, in at least an indirect way, it does. The single defining experience of my undiagnosed autistic childhood, if I have to choose one, would be being treated as if my own beliefs and judgements about myself were false, and that others knew my needs and desires better than I did, meaning that it was appropriate to deny me those desires “for my own good”. Of course, I believe that all, or nearly all, children in Western society experience this – but I experienced it with a particular intensity that is very difficult to verbally describe, particularly to non-autistic people, yet, I have noticed, even with my difficulty in describing it easy for those who have similar experiences to understand.
One of the things that is most noticeable about autistic people is that, due to our differences from the norm in sensory perception, we tend to regard relatively small things (e.g. temperature, light levels, texture of food or of clothing) as crucially important, whereas most neurotypical people would regard them as trivial, as “not worth complaining about”, and certainly not as serious rights violations if (for example in the workplace) we don't get them. This, I think, actually extends more widely, to other areas of life. I have lost count of the number of times I have been outraged to the point of utter horror by instances of denial of autonomy that the vast majority of people would regard as either justifiable or trivial enough to be “not worth worrying about”.
One good example is restrictions placed on people in the name of “health and safety”, which the vast majority of people just seem to accept, without questioning, and even to regard as important examples of human rights being defended (usually in the context of a “right to be safe”). (The concept of a “right to be unsafe” seemingly either never occurs, or seems absurd, to them.) Yet, if one of those restrictions or impositions (e.g., having to wear ear plugs or plastic glasses to work in a factory) is something that is completely intolerable to someone because of autistic sensory issues, although that person would be perfectly capable of doing the job if ze didn't have to wear them, then the ridiculousness of such paternalism (an employer being forced, against both hir own interest and that of the worker, to force a worker to wear something that ze not only doesn't want to, but that would also probably vastly increase hir likelihood of having a dangerous accident due to putting hir in a state of sensory overload) becomes all too obvious to that person. (Yes, I have lost jobs over that exact issue.)
(An equivalent for people with physical impairments would probably be not being allowed to use lifts in an emergency such as a fire – something ostensibly for “safety”, but which leaves people unable to use stairs completely unable to get out of the building unaided in such an emergency...)
A very uncomfortable thing about being against such things is that, usually, it puts me in complete opposition to the vast majority of socialists, and even many anarchists, and the only people who are likely to agree with me are Daily Mail-style conservatives who like to rail against “political correctness gone mad” and extreme “right-libertarians”, whose pro-capitalist positions I find as vile as paternalism...
I think autistic people very often feel the desire to be “left alone”, to be allowed to live our lives as we see fit rather than constantly harassed and questioned in “concerned” terms about why we are doing things that seem counter-intuitive to neurotypical people, far more keenly than the desire to be “supported” (in the sense of active intervention). I think this “naturally” does lead to a libertarian mindset, simply from universalising what we want for ourselves into what we want for all people.
However, I'm nervous of such a viewpoint being attributed totally to “the autistic experience”, both because I've also known autistic people with highly authoritarian or paternalistic views on some aspects of life, and because it reduces belief to an inevitable result of neurology, rather than something arrived at by individual choice or reasoning, which in turn could lead to such beliefs being dismissed as “pathological”, which is IMO one of the worst kinds of illibertarianism of all (personally, I don't think that, even if a belief was an inevitable consequence of neurology, that that would make it “pathological” - but that doesn't mean I don't think the danger of such attribution is real)...
Anyway, the main purpose of this post was to set out the basic ethical “framework” that underlies most of my more specific positions on issues. It probably isn't complete, and I'll probably return to the subject at some point in the future. Debate welcome...
Libertarianism is my most basic and fundamental ethical and political principle - it is what underlies pretty much all my other principles. I am an anti-capitalist, a feminist, a believer in the social model of disability (there needs to be a snappy word for that - social-modellist?), etc., because I am a libertarian, and not vice versa.
Unfortunately, the word “libertarianism”, particularly in English-speaking countries, has been grossly distorted in meaning in its commonest usages - hence my need to explain here what it means to me...
“Libertarianism” has seemingly come to mean a sort of amoral, social-Darwinist style of extreme free-market capitalism, based around a belief that “free trade” (something which I actually believe is an oxymoron, at least when using the word “trade” as it is generally used in an economic context) is the only ethically acceptable way to run an economy. However, this isn't the word's original meaning - according to Wikipedia, the term was coined by the French anarcho-communist Joseph Dejacque in a letter to Pierre-Joseph Proudhon, although other sources say it was first used by Proudhon himself. At any rate, the original (and still mostly current in Europe) usage of the term as a self-description was by anti-capitalists, and the “default” libertarian position was and is the one which needs a qualifier as “left-libertarian” or “libertarian communist/socialist” in the UK and US.
Libertarianism, as far as I am concerned, means a political philosophy which holds freedom from coercion as its primary value, the value which all other values derive from. Thus, as far as I am concerned, a libertarian must be a feminist, because all of the key feminist issues, as far as I can tell, revolve around women lacking and deserving the freedom to control their own lives and their own bodies, and fighting for liberation from a restrictive system of patriarchal family and relationship structures and gender roles. Similarly, as far as I am concerned, a libertarian must be an anti-capitalist, because capitalism is fundamentally incompatible with liberty - as exchange-value, the most fundamental component of capitalist economics, needs some form of authority to define and regulate it, and the capitalist wage-labour system could not exist without coercion (at least in its negative form of threats, e.g. of poverty for not working). (I will expand on this particular topic in a future post, because it's hugely controversial to say the least, and I think it deserves a post to itself.)
As Wikipedia notes, “Libertarian is an antonym of authoritarian” - i.e., it is not, despite the popular understanding in the English-speaking world, an antonym of “socialist”. In fact, as far as I am concerned, the only true socialist is a libertarian, and the only true libertarian is a socialist (which is a pretty good working definition of an anarchist).
(As an aside here, I have become convinced that the disabled people's liberation movement is quite possibly the one movement which holds the key to unifying libertarianism and socialism in such a way as to resolve some of the apparent contradictions in present left-libertarian thought, because it is quite possibly the only movement which is necessarily both libertarian and socialist. This, however, I also intend to expand on in a future post...)
My libertarian ethic basically boils down to this: no person has the right to forcibly prevent any other person from carrying out any action which harms no person other than the person doing it - or, to use a slightly more elegant phrase, “Do as thou wilt, an it harm none”. (OK, I'm not so into the mysticism... well, OK, sometimes...)
One corollary of this is that, as far as I am concerned, no moral judgement is possible of self-regarding actions - what X does to X is no one's business but X's. Of course, it can be convincingly argued that there is no such thing, in reality, as a wholly “self-regarding” action - but, still, I think that, in most everyday situations, the distinction between self-regarding and other-regarding actions is fairly robust and fairly obvious.
Going a bit further, when it comes to other-regarding actions, as far as I am concerned, if all parties in any interaction are fully and freely consenting to that interaction, then no ethical wrong has been done. (Sure, there are plenty of things that 2 or more people can do to each other that I find deeply repellent, but squick does not morality make.) Thus, even one person killing another person might not be morally wrong, because there are situations in which people consent to their own deaths - and I support an inalienable right to suicide, despite the fact that I agree that “we shouldn't be offering assistance with suicide until people can get the assistance they need to get up in the morning”. (if anyone can find me the source of that quote, I'd be very grateful...)
It follows that my definition of “harming someone” isn't necessarily the same as the one generally accepted in mainstream society (and certainly not the same as that held by most medical professional types). As far as I am concerned, “harm” is not defined by material damage to a person, but by antithesis to that person's will – a person is harmed by having something happen to them that they don't want to happen. Thus, while performing bottom surgery on a trans person could certainly be considered “harm” by a purely material definition (a lot of pain, a lot of tissue damage, the loss of organs, a lot of energy needed to recover) – and if the person is transitioning from male to female in a patriarchal society, it will probably do social and economic “harm” as well – it's not harming that person, because it's what that person wants – whereas denying them that surgery emphatically is harming them.
Similarly, while I consider myself to be fundamentally anti-violence, my definition of “violence” isn't necessarily the same as the standard one. I define “violence” as the violation of a person's will, the imposition of something unwanted on a person (whether that something is material harm or anything else), or the prevention of that person from having choice or agency in what happens to hir. This means that consensual BDSM, even if it involves typically “violent” acts such as beatings, isn't violent, whereas, for example, forcing someone to live in a “nursing home”, where they are denied agency over things as basic as what and when they eat, if and when they can leave the house, and even when they can go to the toilet most definitely is.
(I have seen libertarians use different definitions of violence - for instance, while this is an awesome article, its use of the phrase “consensual sexual violence” is, IMO, unfortunate, because according to my definition of “violence” it's an oxymoron... however, I think my use of the word is the only consistent libertarian one which can keep the sense of “violence” being an inherently bad thing...)
(I can't consider myself a pacifist, in the strict sense of that word, because I do believe that, sometimes, a particular act of violence is necessary to prevent greater violence, and I also believe in the legitimacy of self-defence. Strangely enough, it was actually the abortion issue which led me to stop defining myself as a pacifist - when I did consider myself a pacifist (while I was still a Christian, but on my way into anarchism), I had to take an anti-abortion viewpoint, because I believed that - at least after a certain stage - a foetus was a person, and killing it was therefore violence against a person. The argument that it only becomes a person at birth didn't really work for me, because I fail to see a meaningful difference between a baby outside the womb and that same baby a few minutes earlier inside the womb. Realising that violence against a person can be necessary to prevent a greater violence (in this case, forcing the mother to go through pregnancy and labour against her will) resolved my feminism versus anti-violence problem for me...)
One question I have to ask myself is whether, and if so how, my libertarian morality has any connection to my autistic neurology. I believe that, in at least an indirect way, it does. The single defining experience of my undiagnosed autistic childhood, if I have to choose one, would be being treated as if my own beliefs and judgements about myself were false, and that others knew my needs and desires better than I did, meaning that it was appropriate to deny me those desires “for my own good”. Of course, I believe that all, or nearly all, children in Western society experience this – but I experienced it with a particular intensity that is very difficult to verbally describe, particularly to non-autistic people, yet, I have noticed, even with my difficulty in describing it easy for those who have similar experiences to understand.
One of the things that is most noticeable about autistic people is that, due to our differences from the norm in sensory perception, we tend to regard relatively small things (e.g. temperature, light levels, texture of food or of clothing) as crucially important, whereas most neurotypical people would regard them as trivial, as “not worth complaining about”, and certainly not as serious rights violations if (for example in the workplace) we don't get them. This, I think, actually extends more widely, to other areas of life. I have lost count of the number of times I have been outraged to the point of utter horror by instances of denial of autonomy that the vast majority of people would regard as either justifiable or trivial enough to be “not worth worrying about”.
One good example is restrictions placed on people in the name of “health and safety”, which the vast majority of people just seem to accept, without questioning, and even to regard as important examples of human rights being defended (usually in the context of a “right to be safe”). (The concept of a “right to be unsafe” seemingly either never occurs, or seems absurd, to them.) Yet, if one of those restrictions or impositions (e.g., having to wear ear plugs or plastic glasses to work in a factory) is something that is completely intolerable to someone because of autistic sensory issues, although that person would be perfectly capable of doing the job if ze didn't have to wear them, then the ridiculousness of such paternalism (an employer being forced, against both hir own interest and that of the worker, to force a worker to wear something that ze not only doesn't want to, but that would also probably vastly increase hir likelihood of having a dangerous accident due to putting hir in a state of sensory overload) becomes all too obvious to that person. (Yes, I have lost jobs over that exact issue.)
(An equivalent for people with physical impairments would probably be not being allowed to use lifts in an emergency such as a fire – something ostensibly for “safety”, but which leaves people unable to use stairs completely unable to get out of the building unaided in such an emergency...)
A very uncomfortable thing about being against such things is that, usually, it puts me in complete opposition to the vast majority of socialists, and even many anarchists, and the only people who are likely to agree with me are Daily Mail-style conservatives who like to rail against “political correctness gone mad” and extreme “right-libertarians”, whose pro-capitalist positions I find as vile as paternalism...
I think autistic people very often feel the desire to be “left alone”, to be allowed to live our lives as we see fit rather than constantly harassed and questioned in “concerned” terms about why we are doing things that seem counter-intuitive to neurotypical people, far more keenly than the desire to be “supported” (in the sense of active intervention). I think this “naturally” does lead to a libertarian mindset, simply from universalising what we want for ourselves into what we want for all people.
However, I'm nervous of such a viewpoint being attributed totally to “the autistic experience”, both because I've also known autistic people with highly authoritarian or paternalistic views on some aspects of life, and because it reduces belief to an inevitable result of neurology, rather than something arrived at by individual choice or reasoning, which in turn could lead to such beliefs being dismissed as “pathological”, which is IMO one of the worst kinds of illibertarianism of all (personally, I don't think that, even if a belief was an inevitable consequence of neurology, that that would make it “pathological” - but that doesn't mean I don't think the danger of such attribution is real)...
Anyway, the main purpose of this post was to set out the basic ethical “framework” that underlies most of my more specific positions on issues. It probably isn't complete, and I'll probably return to the subject at some point in the future. Debate welcome...
Monday, July 14, 2008
Britain's Missing Top Model
So... the other day, I watched the first 2 episodes of the BBC “reality TV” show, “Britain's Missing Top Model”. This show is about 8 young disabled women who are competing to get to be a professional model (only one gets the contract at the end, and one or more are eliminated each week, similarly to other “reality TV” shows like Survivor or Big Brother). I had very, very mixed feelings about the program...
I'll start with the representation of impairment and disability on the show. Right from the start of the first episode, the focus on impairment in a very individual way was obvious – the opening shots included one of the contestants sobbing about it being “not fair” that her “body won't do what I tell it to do”. There also seemed to be a lot of hierarchies of impairment – both conscious and unconscious – on display – one of the contestants, Debbie, who has one arm, considered herself to be “lucky” for “only” missing an arm, in comparison to Sophie, a wheelchair user, while Sophie was presented (possibly through selective editing) to be heavily in conflict with the 2 deaf women, due to her impairment being “visible” and theirs not. This polarisation felt strongly like it was the deliberate intent of the programme-makers to create conflict between different impairments.
(The hierarchies seemed to be in both directions – both considering “more severe” impairments to be “more genuine” than “less severe” ones, and considering the “less impaired” to be “luckier” or “better off” than the “more impaired”. I need to write a post on the various forms of hierarchy of impairment that exist...)
While there was no evidence that anyone involved in the program was aware of the social model of disability, there was some interesting stuff around disability, as opposed to impairment, being relative to surroundings and circumstances – for example, both the deaf women expressed sentiments to the effect that they did not consider themselves “disabled” in primarily-deaf environments, or environments where they were known and understood, but that they did feel disabled in the environment of the show, where hearing and oral communication were important – even “disabled” relative to people with other impairments... which, IMO, is at least the beginning of an understanding of the social model, but it was somewhat disappointing that this was not really explored further...
The attitude of one contestant in particular, Kelly (who was born “missing” one hand and forearm) was interesting, if problematic, as she several times said that she “never considered herself to have a disability”, with an insistence that suggested she implicitly saw “having a disability” as an inherently negative thing that she wanted to distance herself from. (Kelly also possibly revealed some of my own prejudices, as I found myself almost instinctively taking a strong dislike to her due to her accent and tone of voice, which were of the type I tend to associate with strongly intolerant people with a lot invested in being culturally “mainstream”, and a particularly vicious and hateful attitude towards those who are not “mainstream” - of course, there isn't any real inherent link between that attitude and any particular vocal mannerisms, but it was a very strong, instant association for me.)
There was a lot of discussion on the BBC message boards about representation, particularly in terms of the range of impairments represented. Of course, with the almost infinite diversity of impairments, to be “fully representative” with a group of only 8 people is realistically impossible – although some absences, such as any kind of neurodiversity/cognitive impairment (unless Jenny's brain injury counts) or any kind of visual impairment, were particularly noticeable, especially when there were 2 deaf women and 2 arm amputees out of the 8. However, the representation issue that is more interesting to me is that, despite the fact that they apparently had 350 applicants from whom to pick the final 8, those they picked were all white and very thin (as well as young and “conventionally attractive”) - in fact, the programme makers seemed to be so desperate for thin, white women that, even though the title was "Britain's Missing Top Model", they had to ship in thin white girls from Holland and America rather than allow a non-white or bigger-than-size-10 British woman in. (There was no data in the first 2 episodes as to whether any of the 8 women was anything other than heterosexual.)
(I think it's very telling that Lilli, the contestant who was least thin and darkest in hair and skin tone (although still “white” and still definitely thin by global female standards), and who was eliminated at the end of the second episode mainly for not being “in shape” - which is, I think, actually a subtler form of disablism – was also the one who, after being eliminated, seemed to have something of a feminist awakening, and developed a critique of the modelling industry which led to her no longer wanting to be a model. This was for me the most positive thing in the first 2 episodes...)
There was also a commenter on the BBC message board who said that hir friend had applied to go on the show, but was not picked because she was “too disabled” (although ze didn't clarify exactly what that meant)...
Of course, it's easy to make the argument that any questions of the disability politics of the programme are overshadowed by criticisms of the modelling industry as a whole (and ones that I would mostly agree with). However, there is ambiguity here -while modelling is (IMO) undoubtedly a form of objectification, and full of all kinds of nasty sexist, patriarchal and capitalist elements, which there has been ample analysis of, disabled people's responses to sexual objectification are complex, as Eli Clare (who now has a website! woot!) points out in the chapter “Reading Across the Grain” in “Exile and Pride: Disability, Queerness and Liberation”, when talking about disabled model Ellen Stohl, who appeared on the cover of Playboy:
”Many of the feminists who criticized Ellen didn't know two cents about disability and ableism. For them objectification meant only sexual objectification. Within their analytic framework, soft pornography, like Playboy, was simply and entirely problematic. They rejected Ellen and the disability activists who supported her as dupes of the patriarchy. I wanted to shake them out of their narrow, single-issue analysis. I won't deny that Ellen is sexually objectified in the pages of Playboy and on the cover of New Mobility. But within the context of disability, the meaning of this objectification shifts. Ellen becoming a sex object, being seen and acknowledged as sexy, splashed in colour across the pages of a sex magazine, represents an important fault line, a sudden and welcome admission of disabled people – or at least one white, heterosexual disabled woman whose disability can be made invisible before a camera – as sexual.”
(italics mine)
Clare goes on, on the next page, to say:
”At the same time, I want to remind Ellen's disabled supporters about the dangers of accepting beauty and sexuality as defined exclusively by nondisabled people, by straight people, by white people, by rich people, by men. Let us remember disabled bodies in all their variety. I look at my body set off-center by CP, tense and shaky; my butch body often taken to be male; my body marked, both visibly and not, by rape. I will never look like Ellen Stohl. Nor will most of us. We will never, as Ellen so gracefully does, meet the dominant culture's standards for beauty and sexual attractiveness. Even if we did, I do not want Playboy to define anyone's sexuality – female or male, disabled or not. I believe disability activists need to feel some ambivalence about Ellen in Playboy, even about Ellen on the cover of New Mobility.
My analysis of the sexual aspects of “Britain's Missing Top Model” is pretty much exactly like Clare's analysis of Ellen Stohl's Playboy shoot – while I think the same feminist analysis applies as to any presentation of female bodies for the male gaze, from a disability perspective it can be seen that objectification is a “step up” from not even being considered worthy of objectification. However, all of the disabled women in “Britain's Missing Top Model” fit the same criteria as Ellen Stohl – they are white, young, thin, “conventionally” attractive (at least by the conventions of the “mainstream”, Western modelling industry – which arguably aren't even the same as the conventions of most “mainstream” Western people), and can be positioned and photographed so that they do not “appear disabled” - which is probably the root of Sophie's conflicts with some of the other contestants, as well as Lara Masters' attacks on the deaf and “invisibly” disabled contestants – even though Sophie also fits those criteria as well as Ellen Stohl does (having the same impairment), and even Lara Masters, despite having a more severe and noticeable impairment than any of the contestants, is still thin, white and “conventionally” attractive.
Also, despite the apparent intent to objectify these women in, if not an explicitly sexual, then at least a gendered and thus implicitly sexual context, they seemed oddly desexualised – despite me being exclusively attracted to women, attracted to a pretty broad range of female body types, generally most attracted to women in roughly the same age range as the “Britain's Missing Top Model” contestants, and having a specific “thing” for visibly disabled women, I didn't find myself feeling aroused once while watching the first 2 episodes – in fact, in the scenes which were most obviously intended to be “sexy”, the lingerie modelling in the shop window (in which the contestants found themselves filmed nonconsensually by random male passers-by with camera phones, as well as consensually by the programme makers, and similarly jeered and whistled at by passing men), I felt much more distaste than arousal. But then, that could just be me being “wired up wrong”...
There were a number of things said which I found strikingly, even shockingly, nasty and bigoted which in fact probably had little or nothing to do with disablism, and a lot more to do with the prejudices inherent in modelling as an entire industry (or, indeed, even Western capitalist society as an entire culture) – such as one of the contestants' statement that she felt like she was “not a woman” when not wearing make-up, or the statement by one of the presenters at the start of the second episode that “99% of people never will have... beauty” - which, while probably not intentionally disablist, certainly shows an attitude to the concept of “beauty” which feels to me like it's made out of the same sort of ideological “fabric” as disablism.
The constant, infantilising use of the term “girls” for adult women (whose ages were between 19 and 27) also really annoyed me, especially as it's a usage that, while commonplace, I always make a specific effort to avoid (OK, I have one friend who refers to most women under about 40 as “girls”, but she also refers to most men under about 40 as “boys”, so it's presumably not sexism in her case) – again, this was probably more unexaminedly sexist than disablist in intent, but it felt especially bad in the context of the incredibly prevalent infantilisation of disabled adults (which I think is probably even stronger than patriarchy's infantilising of women) and its very real concrete consequences of loss of autonomy in fundamental aspects of life.
Another observation that struck me from the second episode was the implicit anti-pleasure agenda of attacking women for going out drinking and enjoying themselves, and the way that that was linked to their looks, but not just in a “looks-ist” way, but also through a “health-ist” agenda – the idea that a woman's body is not something she can make her own decisions over, but something that needs to be paternalistically policed in order to keep it within an “acceptable” standard of attractiveness (which quality is, of course, not defined by the woman herself). The petty, patronising attitude of the casting director also added to the impression that one of the main things this show is about is women hating women.
This leads in to what was actually the strongest thing I came away from this with – the inherently deeply nasty ideology of nearly all these type of “reality TV” shows. Like other programmes whose format involves contestants being eliminated at the end of each “round” - e.g. “Big Brother”, “Survivor”, “The Weakest Link” and plenty of other “talent show” type competitions, it's all about conflict and attrition rather than co-operation – with each contestant encouraged to be jealous and suspicious of all the others, because there can only be one winner. This kind of format inevitably leads to petty, vindictive cruelty and backstabbing – with the irony being that the purported “realism” of “reality TV” is a complete fake, because, far from such shows showing people “as they really are”, and thus revealing some sort of fundamental truth about human nature, their environment is a completely unnatural one, bearing no reasonable relationship to actual “real life”...
It's worth noting that, for people with many types of impairments (perhaps unsurprisingly, those unrepresented on the show), such an environment would be completely unbearable – many autistic or otherwise cognitively impaired people, with a lack of the sort of mainstream “social skills”, non-verbal communication abilities, “tactical” dishonesty, etc. that are acutely necessary for dealing with such situations would feel so much anxiety that it could easily lead to complete breakdown, and would almost certainly be the first victims of the nasty, competitive instincts unleashed by such manipulation – they wouldn't stand a chance, simply because of their impairments, which is, I think, an aspect of disablism which probably never even occurred to the programme makers, so deeply ingrained was their implicitly social-Darwinist ideology. (The horrific recent case of Alex Barton, an autistic boy who was actually “voted out” of his primary school class by his teacher, in a “re-enactment” of the “reality TV” show “Survivor”, inescapably comes to mind...)
This post has already got really long, and I'm sure there are other worthwhile observations I've missed out. But no other disability blogger that I'm aware of seems to have posted about this show, so I thought I'd be fairly thorough in putting down everything I thought about it... I watched this, despite already knowing I would dislike it because I already knew how fundamentally unpleasant to someone of anything like my ethical/political views both “reality TV” and the mainstream modelling industry are, simply because it featured disabled people on UK TV, which is a fairly rare thing in itself (at least in any context other than “medical” documentaries, which tend to be all impairment, no disability). It probably actually is raising more awareness of disability issues than any other BBC program I can think of from the last year or so. Still, I'm not sure if I'm going to bother to watch the remaining episodes...
The BBC's official “Britain's Missing Top Model” site is here, (on which the already shown episodes can be watched on the BBC iPlayer – not sure if this is only available within the UK) and there is a discussion board for the show on the BBC Ouch site here.
I'll start with the representation of impairment and disability on the show. Right from the start of the first episode, the focus on impairment in a very individual way was obvious – the opening shots included one of the contestants sobbing about it being “not fair” that her “body won't do what I tell it to do”. There also seemed to be a lot of hierarchies of impairment – both conscious and unconscious – on display – one of the contestants, Debbie, who has one arm, considered herself to be “lucky” for “only” missing an arm, in comparison to Sophie, a wheelchair user, while Sophie was presented (possibly through selective editing) to be heavily in conflict with the 2 deaf women, due to her impairment being “visible” and theirs not. This polarisation felt strongly like it was the deliberate intent of the programme-makers to create conflict between different impairments.
(The hierarchies seemed to be in both directions – both considering “more severe” impairments to be “more genuine” than “less severe” ones, and considering the “less impaired” to be “luckier” or “better off” than the “more impaired”. I need to write a post on the various forms of hierarchy of impairment that exist...)
While there was no evidence that anyone involved in the program was aware of the social model of disability, there was some interesting stuff around disability, as opposed to impairment, being relative to surroundings and circumstances – for example, both the deaf women expressed sentiments to the effect that they did not consider themselves “disabled” in primarily-deaf environments, or environments where they were known and understood, but that they did feel disabled in the environment of the show, where hearing and oral communication were important – even “disabled” relative to people with other impairments... which, IMO, is at least the beginning of an understanding of the social model, but it was somewhat disappointing that this was not really explored further...
The attitude of one contestant in particular, Kelly (who was born “missing” one hand and forearm) was interesting, if problematic, as she several times said that she “never considered herself to have a disability”, with an insistence that suggested she implicitly saw “having a disability” as an inherently negative thing that she wanted to distance herself from. (Kelly also possibly revealed some of my own prejudices, as I found myself almost instinctively taking a strong dislike to her due to her accent and tone of voice, which were of the type I tend to associate with strongly intolerant people with a lot invested in being culturally “mainstream”, and a particularly vicious and hateful attitude towards those who are not “mainstream” - of course, there isn't any real inherent link between that attitude and any particular vocal mannerisms, but it was a very strong, instant association for me.)
There was a lot of discussion on the BBC message boards about representation, particularly in terms of the range of impairments represented. Of course, with the almost infinite diversity of impairments, to be “fully representative” with a group of only 8 people is realistically impossible – although some absences, such as any kind of neurodiversity/cognitive impairment (unless Jenny's brain injury counts) or any kind of visual impairment, were particularly noticeable, especially when there were 2 deaf women and 2 arm amputees out of the 8. However, the representation issue that is more interesting to me is that, despite the fact that they apparently had 350 applicants from whom to pick the final 8, those they picked were all white and very thin (as well as young and “conventionally attractive”) - in fact, the programme makers seemed to be so desperate for thin, white women that, even though the title was "Britain's Missing Top Model", they had to ship in thin white girls from Holland and America rather than allow a non-white or bigger-than-size-10 British woman in. (There was no data in the first 2 episodes as to whether any of the 8 women was anything other than heterosexual.)
(I think it's very telling that Lilli, the contestant who was least thin and darkest in hair and skin tone (although still “white” and still definitely thin by global female standards), and who was eliminated at the end of the second episode mainly for not being “in shape” - which is, I think, actually a subtler form of disablism – was also the one who, after being eliminated, seemed to have something of a feminist awakening, and developed a critique of the modelling industry which led to her no longer wanting to be a model. This was for me the most positive thing in the first 2 episodes...)
There was also a commenter on the BBC message board who said that hir friend had applied to go on the show, but was not picked because she was “too disabled” (although ze didn't clarify exactly what that meant)...
Of course, it's easy to make the argument that any questions of the disability politics of the programme are overshadowed by criticisms of the modelling industry as a whole (and ones that I would mostly agree with). However, there is ambiguity here -while modelling is (IMO) undoubtedly a form of objectification, and full of all kinds of nasty sexist, patriarchal and capitalist elements, which there has been ample analysis of, disabled people's responses to sexual objectification are complex, as Eli Clare (who now has a website! woot!) points out in the chapter “Reading Across the Grain” in “Exile and Pride: Disability, Queerness and Liberation”, when talking about disabled model Ellen Stohl, who appeared on the cover of Playboy:
”Many of the feminists who criticized Ellen didn't know two cents about disability and ableism. For them objectification meant only sexual objectification. Within their analytic framework, soft pornography, like Playboy, was simply and entirely problematic. They rejected Ellen and the disability activists who supported her as dupes of the patriarchy. I wanted to shake them out of their narrow, single-issue analysis. I won't deny that Ellen is sexually objectified in the pages of Playboy and on the cover of New Mobility. But within the context of disability, the meaning of this objectification shifts. Ellen becoming a sex object, being seen and acknowledged as sexy, splashed in colour across the pages of a sex magazine, represents an important fault line, a sudden and welcome admission of disabled people – or at least one white, heterosexual disabled woman whose disability can be made invisible before a camera – as sexual.”
(italics mine)
Clare goes on, on the next page, to say:
”At the same time, I want to remind Ellen's disabled supporters about the dangers of accepting beauty and sexuality as defined exclusively by nondisabled people, by straight people, by white people, by rich people, by men. Let us remember disabled bodies in all their variety. I look at my body set off-center by CP, tense and shaky; my butch body often taken to be male; my body marked, both visibly and not, by rape. I will never look like Ellen Stohl. Nor will most of us. We will never, as Ellen so gracefully does, meet the dominant culture's standards for beauty and sexual attractiveness. Even if we did, I do not want Playboy to define anyone's sexuality – female or male, disabled or not. I believe disability activists need to feel some ambivalence about Ellen in Playboy, even about Ellen on the cover of New Mobility.
My analysis of the sexual aspects of “Britain's Missing Top Model” is pretty much exactly like Clare's analysis of Ellen Stohl's Playboy shoot – while I think the same feminist analysis applies as to any presentation of female bodies for the male gaze, from a disability perspective it can be seen that objectification is a “step up” from not even being considered worthy of objectification. However, all of the disabled women in “Britain's Missing Top Model” fit the same criteria as Ellen Stohl – they are white, young, thin, “conventionally” attractive (at least by the conventions of the “mainstream”, Western modelling industry – which arguably aren't even the same as the conventions of most “mainstream” Western people), and can be positioned and photographed so that they do not “appear disabled” - which is probably the root of Sophie's conflicts with some of the other contestants, as well as Lara Masters' attacks on the deaf and “invisibly” disabled contestants – even though Sophie also fits those criteria as well as Ellen Stohl does (having the same impairment), and even Lara Masters, despite having a more severe and noticeable impairment than any of the contestants, is still thin, white and “conventionally” attractive.
Also, despite the apparent intent to objectify these women in, if not an explicitly sexual, then at least a gendered and thus implicitly sexual context, they seemed oddly desexualised – despite me being exclusively attracted to women, attracted to a pretty broad range of female body types, generally most attracted to women in roughly the same age range as the “Britain's Missing Top Model” contestants, and having a specific “thing” for visibly disabled women, I didn't find myself feeling aroused once while watching the first 2 episodes – in fact, in the scenes which were most obviously intended to be “sexy”, the lingerie modelling in the shop window (in which the contestants found themselves filmed nonconsensually by random male passers-by with camera phones, as well as consensually by the programme makers, and similarly jeered and whistled at by passing men), I felt much more distaste than arousal. But then, that could just be me being “wired up wrong”...
There were a number of things said which I found strikingly, even shockingly, nasty and bigoted which in fact probably had little or nothing to do with disablism, and a lot more to do with the prejudices inherent in modelling as an entire industry (or, indeed, even Western capitalist society as an entire culture) – such as one of the contestants' statement that she felt like she was “not a woman” when not wearing make-up, or the statement by one of the presenters at the start of the second episode that “99% of people never will have... beauty” - which, while probably not intentionally disablist, certainly shows an attitude to the concept of “beauty” which feels to me like it's made out of the same sort of ideological “fabric” as disablism.
The constant, infantilising use of the term “girls” for adult women (whose ages were between 19 and 27) also really annoyed me, especially as it's a usage that, while commonplace, I always make a specific effort to avoid (OK, I have one friend who refers to most women under about 40 as “girls”, but she also refers to most men under about 40 as “boys”, so it's presumably not sexism in her case) – again, this was probably more unexaminedly sexist than disablist in intent, but it felt especially bad in the context of the incredibly prevalent infantilisation of disabled adults (which I think is probably even stronger than patriarchy's infantilising of women) and its very real concrete consequences of loss of autonomy in fundamental aspects of life.
Another observation that struck me from the second episode was the implicit anti-pleasure agenda of attacking women for going out drinking and enjoying themselves, and the way that that was linked to their looks, but not just in a “looks-ist” way, but also through a “health-ist” agenda – the idea that a woman's body is not something she can make her own decisions over, but something that needs to be paternalistically policed in order to keep it within an “acceptable” standard of attractiveness (which quality is, of course, not defined by the woman herself). The petty, patronising attitude of the casting director also added to the impression that one of the main things this show is about is women hating women.
This leads in to what was actually the strongest thing I came away from this with – the inherently deeply nasty ideology of nearly all these type of “reality TV” shows. Like other programmes whose format involves contestants being eliminated at the end of each “round” - e.g. “Big Brother”, “Survivor”, “The Weakest Link” and plenty of other “talent show” type competitions, it's all about conflict and attrition rather than co-operation – with each contestant encouraged to be jealous and suspicious of all the others, because there can only be one winner. This kind of format inevitably leads to petty, vindictive cruelty and backstabbing – with the irony being that the purported “realism” of “reality TV” is a complete fake, because, far from such shows showing people “as they really are”, and thus revealing some sort of fundamental truth about human nature, their environment is a completely unnatural one, bearing no reasonable relationship to actual “real life”...
It's worth noting that, for people with many types of impairments (perhaps unsurprisingly, those unrepresented on the show), such an environment would be completely unbearable – many autistic or otherwise cognitively impaired people, with a lack of the sort of mainstream “social skills”, non-verbal communication abilities, “tactical” dishonesty, etc. that are acutely necessary for dealing with such situations would feel so much anxiety that it could easily lead to complete breakdown, and would almost certainly be the first victims of the nasty, competitive instincts unleashed by such manipulation – they wouldn't stand a chance, simply because of their impairments, which is, I think, an aspect of disablism which probably never even occurred to the programme makers, so deeply ingrained was their implicitly social-Darwinist ideology. (The horrific recent case of Alex Barton, an autistic boy who was actually “voted out” of his primary school class by his teacher, in a “re-enactment” of the “reality TV” show “Survivor”, inescapably comes to mind...)
This post has already got really long, and I'm sure there are other worthwhile observations I've missed out. But no other disability blogger that I'm aware of seems to have posted about this show, so I thought I'd be fairly thorough in putting down everything I thought about it... I watched this, despite already knowing I would dislike it because I already knew how fundamentally unpleasant to someone of anything like my ethical/political views both “reality TV” and the mainstream modelling industry are, simply because it featured disabled people on UK TV, which is a fairly rare thing in itself (at least in any context other than “medical” documentaries, which tend to be all impairment, no disability). It probably actually is raising more awareness of disability issues than any other BBC program I can think of from the last year or so. Still, I'm not sure if I'm going to bother to watch the remaining episodes...
The BBC's official “Britain's Missing Top Model” site is here, (on which the already shown episodes can be watched on the BBC iPlayer – not sure if this is only available within the UK) and there is a discussion board for the show on the BBC Ouch site here.
Tuesday, July 1, 2008
Fucking raging right now.
I am fucking incandescent with rage right now.
Yesterday i got a text from a friend and fellow disability rights activist saying that she was in hospital because Social Services had taken away her Direct Payments, due to her having had trouble with recruiting PAs, and thus leaving her with agency carers who changed from week to week, so didn't have time to get to know her or her impairment, leading to her ending up hospitalised with a potentially very dangerous infection because they weren't doing her personal care properly. She's now been told by a doctor that she's well enough to go home, but is refusing to leave the hospital until Social Services give her written confirmation that they are returning her to Direct Payments so that she can employ continuous PAs.
And then, just now, i found out (through a friends-locked post on her Livejournal from nearly 2 months ago) that another... i'm not quite sure if i have the right to call her "friend", because i've only met her offline once, but definitely comrade in the UK disability rights movement, has been in a fucking nursing home since at least March, and probably almost no one else in the movement knows about it...
Both these people are young, highly intelligent, passionately committed activist women. That shouldn't matter, because no one should be treated this way, regardless of age, IQ, involvement in causes or anything else, but this really fucking hits home. If i had a physical impairment as well as a mental one... this could be me.
Too angry for reasoned comment right now.
THIS SHIT SHOULD NOT BE HAPPENING TO MY PEOPLE!
Yesterday i got a text from a friend and fellow disability rights activist saying that she was in hospital because Social Services had taken away her Direct Payments, due to her having had trouble with recruiting PAs, and thus leaving her with agency carers who changed from week to week, so didn't have time to get to know her or her impairment, leading to her ending up hospitalised with a potentially very dangerous infection because they weren't doing her personal care properly. She's now been told by a doctor that she's well enough to go home, but is refusing to leave the hospital until Social Services give her written confirmation that they are returning her to Direct Payments so that she can employ continuous PAs.
And then, just now, i found out (through a friends-locked post on her Livejournal from nearly 2 months ago) that another... i'm not quite sure if i have the right to call her "friend", because i've only met her offline once, but definitely comrade in the UK disability rights movement, has been in a fucking nursing home since at least March, and probably almost no one else in the movement knows about it...
Both these people are young, highly intelligent, passionately committed activist women. That shouldn't matter, because no one should be treated this way, regardless of age, IQ, involvement in causes or anything else, but this really fucking hits home. If i had a physical impairment as well as a mental one... this could be me.
Too angry for reasoned comment right now.
THIS SHIT SHOULD NOT BE HAPPENING TO MY PEOPLE!
Monday, June 23, 2008
Autscape presentation: help wanted!
So, as i posted a while ago, i am going to Autscape 2008 at the end of July... and I am doing a "major presentation"!
(Yes, Biodiverse Resistance readers... I do have some readers, don't I? (*awaits response*)... you now get to know the crappy name that I was born with... and if anyone realises that they know me offline, please comment or email me, altho, apart from the couple of people who i know already read this, it's probably unlikely...)
The good thing about this is that I only had to pay £25 instead of £175, because Autscape got funding to pay attendance costs for presenters.
The bad thing about it is that... well, to be honest, i didn't think that my proposal for a presentation had much chance of being accepted, and i was quite surprised that it was... so, now, i have to think of a) the actual content of my presentation and b) how to structure it...
This is going to be the first time that i've ever given or led a presentation at any sort of conference, and also the first time i'm going to have been either a) at an organised event with autism as its primary focus or b) in a majority-autistic environment - which latter fact is, i strongly suspect, going to be a very emotionally "heavy", and possibly a bit overwhelming, experience in itself...
I believe my presentation's going to have an hour slot, with possibly some time afterwards for questions/discussion. (I'd probably quite like it to be mostly discussion, actually - i really don't like the very hierarchical, "lecture-like" sort of conference presentation...)
I'd like to have a handout with some references (most likely online articles) which are relevant to the subject. I'm very probably going to use writings by Amanda Baggs and Cal Montgomery (with their permission, if i can get it), and i'm probably going to use references from this debate, and this piece relating to prejudice against "invisibly" disabled people within the disability movement. But i would really like any other people's suggestions for articles that could be relevant...
Also, i'd just generally like to hear people's (especially autistic bloggers') views and thoughts on the topic. Do you think it's a valid one for discussion? Do you think that "autistic rights" is just naturally a subcategory of "disability rights", and therefore that the autistic rights movemnent is simply one part of a wider disability rights movement, or do you think that they are separate - and, if so, why?
What about the autistic rights advocates who express the view (for example, ABFH's post here) that autism "isn't a disability"?
Do you think that the paradigms of the social model of disability, as generally understood in the disability movement, accommodate autistic people and autistic spectrum impairments, or do you think that they need significant modification to do so? (Yes, i know that sounds like an MA dissertation question...)
For people who are actively involved in the disability rights movement, in the UK or abroad, do you think it's dominated by a particular impairment group, or that disabled people with all types of impairments get reasonably equal representation?
Any general tips on how to give presentations would also be welcome...
(Yes, Biodiverse Resistance readers... I do have some readers, don't I? (*awaits response*)... you now get to know the crappy name that I was born with... and if anyone realises that they know me offline, please comment or email me, altho, apart from the couple of people who i know already read this, it's probably unlikely...)
The good thing about this is that I only had to pay £25 instead of £175, because Autscape got funding to pay attendance costs for presenters.
The bad thing about it is that... well, to be honest, i didn't think that my proposal for a presentation had much chance of being accepted, and i was quite surprised that it was... so, now, i have to think of a) the actual content of my presentation and b) how to structure it...
This is going to be the first time that i've ever given or led a presentation at any sort of conference, and also the first time i'm going to have been either a) at an organised event with autism as its primary focus or b) in a majority-autistic environment - which latter fact is, i strongly suspect, going to be a very emotionally "heavy", and possibly a bit overwhelming, experience in itself...
I believe my presentation's going to have an hour slot, with possibly some time afterwards for questions/discussion. (I'd probably quite like it to be mostly discussion, actually - i really don't like the very hierarchical, "lecture-like" sort of conference presentation...)
I'd like to have a handout with some references (most likely online articles) which are relevant to the subject. I'm very probably going to use writings by Amanda Baggs and Cal Montgomery (with their permission, if i can get it), and i'm probably going to use references from this debate, and this piece relating to prejudice against "invisibly" disabled people within the disability movement. But i would really like any other people's suggestions for articles that could be relevant...
Also, i'd just generally like to hear people's (especially autistic bloggers') views and thoughts on the topic. Do you think it's a valid one for discussion? Do you think that "autistic rights" is just naturally a subcategory of "disability rights", and therefore that the autistic rights movemnent is simply one part of a wider disability rights movement, or do you think that they are separate - and, if so, why?
What about the autistic rights advocates who express the view (for example, ABFH's post here) that autism "isn't a disability"?
Do you think that the paradigms of the social model of disability, as generally understood in the disability movement, accommodate autistic people and autistic spectrum impairments, or do you think that they need significant modification to do so? (Yes, i know that sounds like an MA dissertation question...)
For people who are actively involved in the disability rights movement, in the UK or abroad, do you think it's dominated by a particular impairment group, or that disabled people with all types of impairments get reasonably equal representation?
Any general tips on how to give presentations would also be welcome...
Tuesday, June 17, 2008
Disability hate crime: an unrecognised reality?
Today I was collaborating with a couple of other local disability activists on writing an introductory article about disability hate crime (taking as its main reference point the recent UKDPC Briefing on Hate Crime, but simplifying and distilling it with a local focus, and also addressing the non-recognition of disability-related hate crime as such by police and other official agencies). The debate got me thinking about the reasons for this non-recognition...
Hate crime against disabled people, however defined, is a HUGE problem - in the UK, the recent murder of Brent Martin is a recent example, and there are innumerable other horrific incidents - just look at FRIDA's archives of disability news items for examples. Yet, somehow, there seems to be a reluctance, not only within the police and the political establishment, but even within “left-wing” or generally anti-oppressive discourse, to acknowledge that hate crime against disabled people even exists...
Why is this? One reason, IMO, is that the prevailing paradigm of what “hate crime” is is based on a certain template of “typical” hate crime - in the UK at least, primarily racist and, probably to a slightly lesser extent, homophobic/transphobic hate crime.
These sorts of hate crime are characterised by the “hate” element being openly stated and explicit, and by the people or groups of people involved in such crimes generally having a consciously bigoted agenda - they believe their racist or homo/transphobic actions are justified by their own prejudiced value systems, and consciously see the minorities they attack as an enemy. Often they are part of more or less organised ideological groupings, such as fascists or religious fundamentalists.
This kind of hate crime is pretty easy to recognise - graffiti using insulting terms for the minority groups using targeted, often saying things like “[group X] out” or “kill all [group X]”, attacks by groups which are generally pre-planned, involving gangs of racists/homophobes/etc getting together with the deliberate intent of attacking either a specific individual(s) or members of their target group in general (eg, by going to an area where members of that group live, or a social venue where they tend to go with the intention to vandalise or attack people).
With disability hate crime, it tends not quite to work the same way. The thugs who beat Brent Martin to death (whose sentences were just reduced by an appeal judge) were not members of a fascist group, followers of any religion that believes disability is evidence of sin, or followers of the likes of Peter Singer (who believes disabled people should be killed at birth). They had not decided that day that they were going to find and beat up a disabled person, nor, probably, did they consciously perceive disabled people as their “enemies”. They did, however, kill him because they thought that it was socially acceptable to cause pain and/or harm to a disabled person simply for amusement - in other words, they did not see Brent Martin as a fellow human being, but as an object of scorn and ridicule.
From some viewpoints, this attitude is even worse than that of conscious, explicit hatred - I would certainly rather be perceived as an enemy (with the modicum of respect that contains in being seen as at least potentially dangerous, and therefore having some agency), the target of a tribal or holy war, than as a mere object, so far from an equal that hurting or killing “it” is no more than sport . But, in the minds of many, it simply isn't seen as “hatred” - or, as sexual violence was and is, is seen as “personal” rather than “political”, evidence of individual cruelty, but not of societal prejudice or larger underlying values.
Even further from recognition as “hate crime” is the abuse of disabled people - up to and including the killing of disabled children - within the family. Of course, the existing paradigm of hate crime finds it hard to recognise in an intra-family context, as members of families are generally of the same race as each other (and, if it's a mixed-race family, they're very unlikely to be racists) - homophobic and transphobic hate crime does occur within families, but I think it has some of the same problems of recognition there as disablist hate crime does.
This is even harder to see for what it is because torturous “treatments” - which in any other context would constitute assault or worse - see for example here - are often given to disabled children (and some adults, especially if they are learning disabled) supposedly “for their own good”, and even sometimes by or at the request of medical professionals. In some of these cases, such as the torture of autistic children by “chelation”, the violence is motivated by a desire to “cure” the impairment or difference - which, while not consciously perceived as such, certainly implies a desire for a category of people not to exist, which I think “hate” is definitely a reasonable definition for...
In the most extreme cases of all - those of the killing of children by their parents or “carers”, such as the cases of Tracy Latimer or Katie McCarron - the murderers actually assert that their act of killing is motivated not by hate, but by love - in that they believe it is a “loving” and “merciful” act to kill their child rather than let them live as a disabled person. In this case, the underlying hate of disabled people is so deep that it's almost impossible to get through to people that it is hate - but what other than hate of disabled people could underlie the belief that a person's existence is, purely because of their impairment, “worse than death”, and what other than total disregard for their autonomy, and thus status as a human being, could underlie the belief that their own opinion on whether their life is worth living can be totally disregarded?
This is part of why I am wary of “one-size-fits-all” approaches to oppression - while there certainly are many ways in which disablism is analogous to racism, sexism, homophobia, transphobia, etc, it isn't perfectly analogous, and shouldn't be treated as if it is. In particular, the whole “pity”, “care”, hate-masquerading-as-love paradigm is, I think, if not peculiar to disablism then certainly far more characteristic of it than of the other prejudices/oppressions it's most frequently compared to, while disablism tends to manifest itself as open enmity much less than the others do. (If anything, in terms of racism, the kind of disablist bigotry that is prevalent now is less like most contemporary racism than it is like the kind of “white man's burden”, “children of a larger growth” paternalistic racism that was the paradigmatic form in Empire times.)
Of course, I have fairly major problems with the whole concept of “hate crime” in itself - not least because I have major problems with its component concept of “crime” as a whole (which concept, IMO, brackets together at least 3 extremely different categories of acts, purely by the almost completely arbitrary fact that, in the current political system, they are codified as “illegal”... but that's a topic for another post), but also because, even when the acts described above are recognised as “hate crime”, it fails even to touch the institutionalised social oppression of disabled people - in residential homes, “special” schools, hospitals, and the “social care” system as a whole - which constitutes a “crime”, in terms of abuses of disabled people's human rights, far bigger than that of any individual (just as, for example, the institutionally racist oppression of asylum seekers in immigration detention centres (which closely resemble “care homes”, possibly even more so than they do prisons, in the way that they are run and administered) is a far greater “crime” than the actions of any small-scale gang of racist thugs).
However, the point of this post is really that I think disablism is, often if not always, more difficult to recognise for what it is than most other prejudices and oppressive systems - and not just because it has been recognised for less time, or because the disabled people's liberation movement is “behind” other liberation movements (in chronological or progressivist terms), but because the forms that it takes are actually substantially different, and, in some ways, IMO harder to recognise precisely because they are more deeply ingrained in the unconscious foundations of “Western culture” - in assumptions so deep that they aren't even consciously noticed.
What this means for the disabled people's liberation movement, I'm not quite certain (apart from that, possibly, too-direct analogies to the experiences of other oppressed peoples may, in some circumstances, be counterproductive) - but one thing that strikes me is that that implies the disabled people's liberation movement has the potential for a deeper and more radical undermining of currently-hegemonic cultural values than perhaps any other movement. That, however, is definitely a topic that needs another post...
Hate crime against disabled people, however defined, is a HUGE problem - in the UK, the recent murder of Brent Martin is a recent example, and there are innumerable other horrific incidents - just look at FRIDA's archives of disability news items for examples. Yet, somehow, there seems to be a reluctance, not only within the police and the political establishment, but even within “left-wing” or generally anti-oppressive discourse, to acknowledge that hate crime against disabled people even exists...
Why is this? One reason, IMO, is that the prevailing paradigm of what “hate crime” is is based on a certain template of “typical” hate crime - in the UK at least, primarily racist and, probably to a slightly lesser extent, homophobic/transphobic hate crime.
These sorts of hate crime are characterised by the “hate” element being openly stated and explicit, and by the people or groups of people involved in such crimes generally having a consciously bigoted agenda - they believe their racist or homo/transphobic actions are justified by their own prejudiced value systems, and consciously see the minorities they attack as an enemy. Often they are part of more or less organised ideological groupings, such as fascists or religious fundamentalists.
This kind of hate crime is pretty easy to recognise - graffiti using insulting terms for the minority groups using targeted, often saying things like “[group X] out” or “kill all [group X]”, attacks by groups which are generally pre-planned, involving gangs of racists/homophobes/etc getting together with the deliberate intent of attacking either a specific individual(s) or members of their target group in general (eg, by going to an area where members of that group live, or a social venue where they tend to go with the intention to vandalise or attack people).
With disability hate crime, it tends not quite to work the same way. The thugs who beat Brent Martin to death (whose sentences were just reduced by an appeal judge) were not members of a fascist group, followers of any religion that believes disability is evidence of sin, or followers of the likes of Peter Singer (who believes disabled people should be killed at birth). They had not decided that day that they were going to find and beat up a disabled person, nor, probably, did they consciously perceive disabled people as their “enemies”. They did, however, kill him because they thought that it was socially acceptable to cause pain and/or harm to a disabled person simply for amusement - in other words, they did not see Brent Martin as a fellow human being, but as an object of scorn and ridicule.
From some viewpoints, this attitude is even worse than that of conscious, explicit hatred - I would certainly rather be perceived as an enemy (with the modicum of respect that contains in being seen as at least potentially dangerous, and therefore having some agency), the target of a tribal or holy war, than as a mere object, so far from an equal that hurting or killing “it” is no more than sport . But, in the minds of many, it simply isn't seen as “hatred” - or, as sexual violence was and is, is seen as “personal” rather than “political”, evidence of individual cruelty, but not of societal prejudice or larger underlying values.
Even further from recognition as “hate crime” is the abuse of disabled people - up to and including the killing of disabled children - within the family. Of course, the existing paradigm of hate crime finds it hard to recognise in an intra-family context, as members of families are generally of the same race as each other (and, if it's a mixed-race family, they're very unlikely to be racists) - homophobic and transphobic hate crime does occur within families, but I think it has some of the same problems of recognition there as disablist hate crime does.
This is even harder to see for what it is because torturous “treatments” - which in any other context would constitute assault or worse - see for example here - are often given to disabled children (and some adults, especially if they are learning disabled) supposedly “for their own good”, and even sometimes by or at the request of medical professionals. In some of these cases, such as the torture of autistic children by “chelation”, the violence is motivated by a desire to “cure” the impairment or difference - which, while not consciously perceived as such, certainly implies a desire for a category of people not to exist, which I think “hate” is definitely a reasonable definition for...
In the most extreme cases of all - those of the killing of children by their parents or “carers”, such as the cases of Tracy Latimer or Katie McCarron - the murderers actually assert that their act of killing is motivated not by hate, but by love - in that they believe it is a “loving” and “merciful” act to kill their child rather than let them live as a disabled person. In this case, the underlying hate of disabled people is so deep that it's almost impossible to get through to people that it is hate - but what other than hate of disabled people could underlie the belief that a person's existence is, purely because of their impairment, “worse than death”, and what other than total disregard for their autonomy, and thus status as a human being, could underlie the belief that their own opinion on whether their life is worth living can be totally disregarded?
This is part of why I am wary of “one-size-fits-all” approaches to oppression - while there certainly are many ways in which disablism is analogous to racism, sexism, homophobia, transphobia, etc, it isn't perfectly analogous, and shouldn't be treated as if it is. In particular, the whole “pity”, “care”, hate-masquerading-as-love paradigm is, I think, if not peculiar to disablism then certainly far more characteristic of it than of the other prejudices/oppressions it's most frequently compared to, while disablism tends to manifest itself as open enmity much less than the others do. (If anything, in terms of racism, the kind of disablist bigotry that is prevalent now is less like most contemporary racism than it is like the kind of “white man's burden”, “children of a larger growth” paternalistic racism that was the paradigmatic form in Empire times.)
Of course, I have fairly major problems with the whole concept of “hate crime” in itself - not least because I have major problems with its component concept of “crime” as a whole (which concept, IMO, brackets together at least 3 extremely different categories of acts, purely by the almost completely arbitrary fact that, in the current political system, they are codified as “illegal”... but that's a topic for another post), but also because, even when the acts described above are recognised as “hate crime”, it fails even to touch the institutionalised social oppression of disabled people - in residential homes, “special” schools, hospitals, and the “social care” system as a whole - which constitutes a “crime”, in terms of abuses of disabled people's human rights, far bigger than that of any individual (just as, for example, the institutionally racist oppression of asylum seekers in immigration detention centres (which closely resemble “care homes”, possibly even more so than they do prisons, in the way that they are run and administered) is a far greater “crime” than the actions of any small-scale gang of racist thugs).
However, the point of this post is really that I think disablism is, often if not always, more difficult to recognise for what it is than most other prejudices and oppressive systems - and not just because it has been recognised for less time, or because the disabled people's liberation movement is “behind” other liberation movements (in chronological or progressivist terms), but because the forms that it takes are actually substantially different, and, in some ways, IMO harder to recognise precisely because they are more deeply ingrained in the unconscious foundations of “Western culture” - in assumptions so deep that they aren't even consciously noticed.
What this means for the disabled people's liberation movement, I'm not quite certain (apart from that, possibly, too-direct analogies to the experiences of other oppressed peoples may, in some circumstances, be counterproductive) - but one thing that strikes me is that that implies the disabled people's liberation movement has the potential for a deeper and more radical undermining of currently-hegemonic cultural values than perhaps any other movement. That, however, is definitely a topic that needs another post...
Monday, June 16, 2008
For Elizabeth
So, while i was offline, the very very awesome Elizabeth McClung (if you haven't heard of her, GO READ HER BLOG. NOW.) and her partner Linda had a weekend where they asked readers to go out and send photos of the places they had been to (which is a really crap description, cos i'm not being very good with words tonight, but go here...)
At the time i couldn't get online, so i didn't know about, but coincidentally, on the same weekend i ended up going on a ridiculously epic walk (of about, er, 8 hours), the intent of which was to break in a new pair of boots*, but which was considerably over the top for that purpose, and resulted in more like the boots breaking in my feet. Which, come to think of it, was a somewhat Elizabeth-ish thing to do, so maybe i was slightly channeling her in some way...
* I always wear steel toe-cap boots. The fact that i started wearing them after having a relationship with a partially sighted powerchair user is, er, entirely coincidental... ;)
Anyway, on the walk i discovered an old village churchyard, and in it was this gravestone featuring a rather gothic crip angel:
[photo shows a kinda Victorian/Gothic style family monument, consisting of a winged, female-looking angel bowing down on one knee, on top of a large block of stone with the family's names on it, in a graveyard with other, plainer gravestones and ivy-covered trees in the background. The angel's left arm is broken off at the elbow, and her right hand is broken off at the wrist. She's also missing part of her left wing. One of the names just visible at the bottom of the gravestone is "Elizabeth".)
Unfortunately, altho i saw several crows, i didn't get photos of any of them, since i clearly don't have Elizabeth's rapport with them - in fact, all members of the Corvidae seem to be extremely opposed to having their photographs taken, at least by me, as, almost without exception, they seem to let me get as close as i want without a camera in my hand, but as soon as i get it out, they fly off. (I wanted to get one of a magpie i saw today that was entirely missing its tail feathers, which is surely disabled by magpie standards, but it was even more camera-wary than they usually are. The only crow i have managed to photograph is this one.)
I did, however, get some photos of squirrels, including this rather demonic-looking one:
and this one, which i'm quite pleased with in terms of both pose and composition:
Of course, none of this compares with the photos of the place Elizabeth herself went the other day, but... well, she is sending me a postcard from Japan from Canada (er... i think you know what i mean), so i had to do something in return...
(Boo to Blogger for not letting me upload my pics last night. They're here now...)
At the time i couldn't get online, so i didn't know about, but coincidentally, on the same weekend i ended up going on a ridiculously epic walk (of about, er, 8 hours), the intent of which was to break in a new pair of boots*, but which was considerably over the top for that purpose, and resulted in more like the boots breaking in my feet. Which, come to think of it, was a somewhat Elizabeth-ish thing to do, so maybe i was slightly channeling her in some way...
* I always wear steel toe-cap boots. The fact that i started wearing them after having a relationship with a partially sighted powerchair user is, er, entirely coincidental... ;)
Anyway, on the walk i discovered an old village churchyard, and in it was this gravestone featuring a rather gothic crip angel:
[photo shows a kinda Victorian/Gothic style family monument, consisting of a winged, female-looking angel bowing down on one knee, on top of a large block of stone with the family's names on it, in a graveyard with other, plainer gravestones and ivy-covered trees in the background. The angel's left arm is broken off at the elbow, and her right hand is broken off at the wrist. She's also missing part of her left wing. One of the names just visible at the bottom of the gravestone is "Elizabeth".)
Unfortunately, altho i saw several crows, i didn't get photos of any of them, since i clearly don't have Elizabeth's rapport with them - in fact, all members of the Corvidae seem to be extremely opposed to having their photographs taken, at least by me, as, almost without exception, they seem to let me get as close as i want without a camera in my hand, but as soon as i get it out, they fly off. (I wanted to get one of a magpie i saw today that was entirely missing its tail feathers, which is surely disabled by magpie standards, but it was even more camera-wary than they usually are. The only crow i have managed to photograph is this one.)
I did, however, get some photos of squirrels, including this rather demonic-looking one:
and this one, which i'm quite pleased with in terms of both pose and composition:
Of course, none of this compares with the photos of the place Elizabeth herself went the other day, but... well, she is sending me a postcard from Japan from Canada (er... i think you know what i mean), so i had to do something in return...
(Boo to Blogger for not letting me upload my pics last night. They're here now...)
Tuesday, May 27, 2008
Euthanasia is NOT the same thing as assisted suicide.
As there have been several recent* stories in the mainstream news about assisted suicide (such as this one, found via BBC Ouch, this one and this one, found via FRIDA, and this rather surreal one, found via the "Breaking News" blog at Fortean Times), i've been thinking about my views on the subject, and decided to try to dig up an old post of mine from a couple of years ago, in which i tried to sum up my position, on Barbelith:
Right, i'm going to try to articulate my position now.
I believe euthanasia is utterly different from assisted suicide (often wrongly conflated with it), and that the difference is basically that the latter is suicide and the former is basically murder.
I believe the only consistent libertarian position that can be taken on life-and-death issues is that the individual, and only the individual, has an absolute right over hir own body and hir own life (and, to make this possible, the only limit to that is that ze absolutely and categorically has not got a right over any other individual's body or life).
This means that i do believe every person, regardless of disability, illness or lack thereof, has the right to suicide, as the right to life, IMO, is rendered utterly meaningless if it is not accompanied by its converse, the right not to choose life. In the case of a person too severely physically disabled to commit suicide without help, therefore i believe that, just as ze has a human right (IMO) to free assistance with every other task ze wants to but is physically unable to do (as far as is possible), ze has a right to be assisted to commit suicide (although i do recognise the potential ethical difficulties in requiring someone employed as a personal assistant to effectively end their own employment, and to do something they may have major moral problems with... so i'm not sure that anyone should be required to assist in an individual's suicide).
Where i think assisted suicide as a right does get into extremely dodgy ground is the issue of doctors or family members putting pressure on a person to commit suicide (to free up hospital beds, say, or relieve the burden of caring responsibilities), or of people's choice to die being motivated primarily be society not accommodating their needs or impressing on them that their life is not worth living or that they don't deserve to live (part of my response to that is, of course, a call for change in social attitudes towards illness and disability; another part is the assertion that assisted suicide should be carried out by someone who the disabled person has authority over, such as a personal assistant, rather than by someone who has authority over them, such as a doctor).
However, assisted suicide is not euthanasia - euthanasia is the killing of one person by another, not by hirself. Euthanasia, to me, is totally morally unacceptable because it is a total violation of the principle of autonomy over one's own body/self - it is not carried out at the request of the patient (or if it is, it should be categorised as assisted suicide), but at the decision of a doctor based on criteria of whether there is any chance of recovery or whether "suffering" is unbearable - criteria which to me are irrelevant, because to me the only possible judge of whether the suffering of life is unbearable is the "sufferer" hirself.
If the person in question has no capacity to consent or no ability to communicate, as in the case of a small child (such as Charlotte Wyatt) or a person who is unconscious or in a vegetative state (such as Terri Schiavo), then IMO the presumption has to be in favour of life - because, if the person's desire, were they conscious or able to consent/communicate, was to die, then they would be being kept alive against their will, but they would not be in a state to know or express that will, whereas if their desire, were they conscious or able to consent/communicate, was to live, and they were "allowed to die", then they would be being killed against their will - and the only word for that is murder.
IMO it makes absolutely no difference if the motive is "ending the person's suffering" as opposed to "hating or wanting to exterminate the person" - in fact, if anything, IMO, the former is worse - paternalism on such a level that the state/doctors/whoever actually gets to overrule your own (actual or speculative) wishes on whether you want to live or not (reminiscent of when Hell is taken over by the angels in Gaiman's Sandman: Season of Mists...) Only the person suffering can decide if hir suffering is great enough to render their life unliveable or not, and if there is no way of finding out their feelings on the matter, or they are not sufficiently capable of rational thought to make such a decision, then IMO the only morally acceptable thing is to keep them alive - just as, if you believe the death penalty is appropriate for a particular crime (rape, say), then it's still not acceptable to execute unless there is proof beyond reasonable doubt that the accused actually did it...
Also IMO there isn't a fundamental difference between killing someone by withdrawal of nutrition, etc (as has been quite correctly pointed out is already routinely done, just not talked about) or by "actively" killing - except that the former could, at an extreme stretch, be sort-of-semi-justified by "lack of resources" arguments, whereas the latter never could...
The "lack of resources" argument is, to me, a bit of a red herring anyway - you could equally well say that, say, gender reassignment operations were not "life-saving" as such, and thus resources should not be spent on them but on more "urgent" operations (which argument is actually used to force transsexuals in the UK to pay (in part) for their own operations even on the NHS, which i'm sure no one here would regard as defensible)... likewise abortion on demand, or anything else...
And i'm not sure why you can dismiss "slippery slope" arguments - if doctors (as opposed to the individual living it) are given the power to decide whether a life is worth saving or not, then what if they decide, say, that a life paralysed isn't worth saving, and don't bother trying to save the lives of people who have had spinal cord injuries? Or, say, that a life with under a certain IQ (itself a highly dodgy concept) isn't worth living, and don't bother giving essential medical treatment to mentally disabled people (which category could include myself)? Many hospitals already deny heart surgery to children because they have Down's syndrome. I personally know people who have recovered from prognoses considered "terminal". These are very real concerns for many disabled people - who do see a slippery slope, and themselves (ourselves) in very real danger of ending up at the bottom of it...
(the original thread is here... there was an interesting, but IMO incomplete, debate there, which IIRC i didn't really feel up to returning to at the time... i also posted a link to a discussion of the same topic on the BBC Ouch message board)
I think i made my views reasonably clear there. If they have changed at all since, it's probably slightly - but only slightly - in the "Not Dead Yet" direction - if only because i'm even less comfortable with the idea of asking a PA to assist with suicide than i was then. I still agree with the MindFreedom/Antipsychiatry Coalition position on suicide in general, for all the reasons outlined above (and that, in fact, was pretty much the origin of my whole libertarian belief system which led me to the philosophy of the Independent Living Movement in the first place), but i do have to stand with Not Dead Yet in their argument that very many of the lives considered "not worth living" are only so because of social conditions - the most obvious being life in institutions - and that those people would not want to commit suicide if the proper social support to enable them to live lives of independence, dignity and equality were available.
There is a point here relating to depression and how it gets conceptualised - the prevailing view in mainstream/"establishment" discourse seems to be that depression is "endogenous", or a result of chemical abnormalities within the individual brain, whereas a social model or "personal is political" viewpoint would argue that it is more likely to be caused by oppressive and unacceptable social conditions, whether at a home/family/immediate surroundings level or at a wider systemic level. However, like with most iterations of the "nature vs. nurture" debate, I don't find the position held by some antipsychiatrists that all depression is social in origin useful - there is solid evidence that, in some cases, depression does have a clearly biological origin, and in some of those cases, it is treatable by biochemical means (an obvious example being gender dysphoria and the extremely high success rate of treating it with hormones and surgery, as opposed to the extremely low success rate of "treating" it with "normalisation" therapy - in fact, most attempts at the latter end in suicide).
If most depression is (and I do think most depression is) caused primarily by social conditions, then the obvious, non-medical solution to the problem is to change those social conditions (which, obviously, is easier said than done). However, if someone has truly endogenous depression (that is, in social model terms, their depression is not a result of disability, but is in fact their impairment), to the extent of unrelentingly feeling suicidal, and no drug treatment is successful in having a positive effect on it (as does happen in many cases), then is forcible suicide prevention - that is, denying death to someone who truly cannot find anything positive in life - really justifiable? If someone I loved was in that position, while of course I would tell them how much I valued them and wanted them to stay alive, ultimately it would be utterly selfish, and even arguably a form of torture, to keep them alive when life was intolerable for them - and so, ultimately, I think I would, albeit deeply regretfully, if necessary help them to die.
However, this is actually a slight digression (and something that really deserves its own full post) - the purpose of this post was really to say that euthanasia is not the same thing as assisted suicide, and that, while some of the same issues tend to be present in individual cases of both, conflating them with one another is inaccurate, confusing and helps no one - indeed, it potentially endangers a lot of people, especially when the kind of arguments most properly used in regard to assisted suicide get used in clear cases of "mercy killing" (aka murder) - the Latimer case, for example - in which there is no evidence whatsoever of suicidal feelings on the part of the victim. It shows, to me, a disturbing lack of understanding of the most fundamental aspects of the ethics of life and death on the part of writers and journalists to conflate such concepts with each other...
* "recent" here now meaning a couple of months ago, as this post was written in early April and is only being posted now because of having been offline for so long...
Right, i'm going to try to articulate my position now.
I believe euthanasia is utterly different from assisted suicide (often wrongly conflated with it), and that the difference is basically that the latter is suicide and the former is basically murder.
I believe the only consistent libertarian position that can be taken on life-and-death issues is that the individual, and only the individual, has an absolute right over hir own body and hir own life (and, to make this possible, the only limit to that is that ze absolutely and categorically has not got a right over any other individual's body or life).
This means that i do believe every person, regardless of disability, illness or lack thereof, has the right to suicide, as the right to life, IMO, is rendered utterly meaningless if it is not accompanied by its converse, the right not to choose life. In the case of a person too severely physically disabled to commit suicide without help, therefore i believe that, just as ze has a human right (IMO) to free assistance with every other task ze wants to but is physically unable to do (as far as is possible), ze has a right to be assisted to commit suicide (although i do recognise the potential ethical difficulties in requiring someone employed as a personal assistant to effectively end their own employment, and to do something they may have major moral problems with... so i'm not sure that anyone should be required to assist in an individual's suicide).
Where i think assisted suicide as a right does get into extremely dodgy ground is the issue of doctors or family members putting pressure on a person to commit suicide (to free up hospital beds, say, or relieve the burden of caring responsibilities), or of people's choice to die being motivated primarily be society not accommodating their needs or impressing on them that their life is not worth living or that they don't deserve to live (part of my response to that is, of course, a call for change in social attitudes towards illness and disability; another part is the assertion that assisted suicide should be carried out by someone who the disabled person has authority over, such as a personal assistant, rather than by someone who has authority over them, such as a doctor).
However, assisted suicide is not euthanasia - euthanasia is the killing of one person by another, not by hirself. Euthanasia, to me, is totally morally unacceptable because it is a total violation of the principle of autonomy over one's own body/self - it is not carried out at the request of the patient (or if it is, it should be categorised as assisted suicide), but at the decision of a doctor based on criteria of whether there is any chance of recovery or whether "suffering" is unbearable - criteria which to me are irrelevant, because to me the only possible judge of whether the suffering of life is unbearable is the "sufferer" hirself.
If the person in question has no capacity to consent or no ability to communicate, as in the case of a small child (such as Charlotte Wyatt) or a person who is unconscious or in a vegetative state (such as Terri Schiavo), then IMO the presumption has to be in favour of life - because, if the person's desire, were they conscious or able to consent/communicate, was to die, then they would be being kept alive against their will, but they would not be in a state to know or express that will, whereas if their desire, were they conscious or able to consent/communicate, was to live, and they were "allowed to die", then they would be being killed against their will - and the only word for that is murder.
IMO it makes absolutely no difference if the motive is "ending the person's suffering" as opposed to "hating or wanting to exterminate the person" - in fact, if anything, IMO, the former is worse - paternalism on such a level that the state/doctors/whoever actually gets to overrule your own (actual or speculative) wishes on whether you want to live or not (reminiscent of when Hell is taken over by the angels in Gaiman's Sandman: Season of Mists...) Only the person suffering can decide if hir suffering is great enough to render their life unliveable or not, and if there is no way of finding out their feelings on the matter, or they are not sufficiently capable of rational thought to make such a decision, then IMO the only morally acceptable thing is to keep them alive - just as, if you believe the death penalty is appropriate for a particular crime (rape, say), then it's still not acceptable to execute unless there is proof beyond reasonable doubt that the accused actually did it...
Also IMO there isn't a fundamental difference between killing someone by withdrawal of nutrition, etc (as has been quite correctly pointed out is already routinely done, just not talked about) or by "actively" killing - except that the former could, at an extreme stretch, be sort-of-semi-justified by "lack of resources" arguments, whereas the latter never could...
The "lack of resources" argument is, to me, a bit of a red herring anyway - you could equally well say that, say, gender reassignment operations were not "life-saving" as such, and thus resources should not be spent on them but on more "urgent" operations (which argument is actually used to force transsexuals in the UK to pay (in part) for their own operations even on the NHS, which i'm sure no one here would regard as defensible)... likewise abortion on demand, or anything else...
And i'm not sure why you can dismiss "slippery slope" arguments - if doctors (as opposed to the individual living it) are given the power to decide whether a life is worth saving or not, then what if they decide, say, that a life paralysed isn't worth saving, and don't bother trying to save the lives of people who have had spinal cord injuries? Or, say, that a life with under a certain IQ (itself a highly dodgy concept) isn't worth living, and don't bother giving essential medical treatment to mentally disabled people (which category could include myself)? Many hospitals already deny heart surgery to children because they have Down's syndrome. I personally know people who have recovered from prognoses considered "terminal". These are very real concerns for many disabled people - who do see a slippery slope, and themselves (ourselves) in very real danger of ending up at the bottom of it...
(the original thread is here... there was an interesting, but IMO incomplete, debate there, which IIRC i didn't really feel up to returning to at the time... i also posted a link to a discussion of the same topic on the BBC Ouch message board)
I think i made my views reasonably clear there. If they have changed at all since, it's probably slightly - but only slightly - in the "Not Dead Yet" direction - if only because i'm even less comfortable with the idea of asking a PA to assist with suicide than i was then. I still agree with the MindFreedom/Antipsychiatry Coalition position on suicide in general, for all the reasons outlined above (and that, in fact, was pretty much the origin of my whole libertarian belief system which led me to the philosophy of the Independent Living Movement in the first place), but i do have to stand with Not Dead Yet in their argument that very many of the lives considered "not worth living" are only so because of social conditions - the most obvious being life in institutions - and that those people would not want to commit suicide if the proper social support to enable them to live lives of independence, dignity and equality were available.
There is a point here relating to depression and how it gets conceptualised - the prevailing view in mainstream/"establishment" discourse seems to be that depression is "endogenous", or a result of chemical abnormalities within the individual brain, whereas a social model or "personal is political" viewpoint would argue that it is more likely to be caused by oppressive and unacceptable social conditions, whether at a home/family/immediate surroundings level or at a wider systemic level. However, like with most iterations of the "nature vs. nurture" debate, I don't find the position held by some antipsychiatrists that all depression is social in origin useful - there is solid evidence that, in some cases, depression does have a clearly biological origin, and in some of those cases, it is treatable by biochemical means (an obvious example being gender dysphoria and the extremely high success rate of treating it with hormones and surgery, as opposed to the extremely low success rate of "treating" it with "normalisation" therapy - in fact, most attempts at the latter end in suicide).
If most depression is (and I do think most depression is) caused primarily by social conditions, then the obvious, non-medical solution to the problem is to change those social conditions (which, obviously, is easier said than done). However, if someone has truly endogenous depression (that is, in social model terms, their depression is not a result of disability, but is in fact their impairment), to the extent of unrelentingly feeling suicidal, and no drug treatment is successful in having a positive effect on it (as does happen in many cases), then is forcible suicide prevention - that is, denying death to someone who truly cannot find anything positive in life - really justifiable? If someone I loved was in that position, while of course I would tell them how much I valued them and wanted them to stay alive, ultimately it would be utterly selfish, and even arguably a form of torture, to keep them alive when life was intolerable for them - and so, ultimately, I think I would, albeit deeply regretfully, if necessary help them to die.
However, this is actually a slight digression (and something that really deserves its own full post) - the purpose of this post was really to say that euthanasia is not the same thing as assisted suicide, and that, while some of the same issues tend to be present in individual cases of both, conflating them with one another is inaccurate, confusing and helps no one - indeed, it potentially endangers a lot of people, especially when the kind of arguments most properly used in regard to assisted suicide get used in clear cases of "mercy killing" (aka murder) - the Latimer case, for example - in which there is no evidence whatsoever of suicidal feelings on the part of the victim. It shows, to me, a disturbing lack of understanding of the most fundamental aspects of the ethics of life and death on the part of writers and journalists to conflate such concepts with each other...
* "recent" here now meaning a couple of months ago, as this post was written in early April and is only being posted now because of having been offline for so long...
Saturday, May 3, 2008
Passing, stealth and disability identity
This is a late response to Blogging Against Disablism Day. It’s also a (hopefully not too late) submission for the next Disability Blog Carnival, hosted by Miss Crip Chick, the theme of which is “Disability Identity”. It’s probably not as good a post as it could have been if I had internet access at home at the moment (I’ve been going to internet cafes, cutting and pasting the stuff I've wanted to link to or quote and saving it to a floppy disk, then back home to actually write this… so, sorry if it’s a bit sprawling or disjointed-seeming), but I didn’t want to leave it until too late to submit it for the carnival...
This post was, in part, inspired by Ballastexistenz’s (utterly awesome) post for BADD, “Excuses to be a jerk", which “passing” isn’t the primary subject of, but in which she does say the following about the subject:
In a person who is passing, there is also often tension between who they’re trying to appear to be, and who they are. It can look like the usual angstiness some people go through; after all, most people hide certain aspects of who they are in order to fit in. But passing as non-autistic is a bigger disconnect than pretending to like bands you really hate, or even than pretending to like people you really can’t stand, or to feel feelings different than the ones you know you have.
Passing can mean, in its most extreme forms of disconnect, having no or close to no understanding of most of the words one is using, most of the interactions one is engaging in, etc.
...
Be aware that when the above happens, the disconnect is on the level of a disabled person passing as non-disabled, not a whiny person who just doesn’t realize how much like everyone else they really are. Yes, there are things all humans have in common. No, that doesn’t solve the severity of depression, disconnect, and alienation that autistic people often experience when passing, particularly when the person they’re passing as (or being passed off as by others, since passing can be entirely in other people’s heads, too) understands things they don’t. It’s a lot closer to a deaf person passing for hearing (while entirely missing at least 80% of conversations as a result), or a blind person trying to drive a car without crashing it or letting on that they’re blind, or a person from one culture being thrown into a totally alien culture (where nobody’s ever even heard of one’s own culture) with no preparation and trying to pass as comprehending, than a person with certain abilities trying to pretend they are similar to someone with roughly the same set of abilities but a different personality. Not that that’s easy either, but there’s an order of magnitude or two here that needs to not be missed.
Of course, not all autistic people are in a situation where passing is possible, whether due to their own abilities, the expectations of those around them, or both. And passing has gradations, too. It’s not like there are those who pass and those who don’t pass. It’s more like there are those who pass to different degrees, as different things, and in different situations. Passing can also be wholly unintentional and unnoticed, but I’ll get into that later.
(There is so, so much else in that post that I identify with more strongly and deeply than I could put into words right now, and, in fact, huge sections of it perfectly describe me, but that would be spinning off well outside the subject of this post. Suffice to say that it’s one of the best pieces of writing about autism that I've ever read.)
The first place I encountered the term “passing” was in African-American historical literature (which was one of my perseverations during my teens), referring to light-skinned (but categorised as “black” under the segregationist laws of the time, and also culturally “black”) mixed-race people who passed as white in order to get all the social benefits that that status gave them in an openly racist society and legal system. (The main protagonists of such novels in the late 19th and early 20th centuries were very often a young man or woman who passed as white and whose relationship with a white partner turned to tragedy when their “true” ethnicity was revealed.) The place I most often encounter it (and the related notion of “stealth”) now is in the online trans* community (there are very good posts about the subject by many trans* bloggers, including Questioning Transphobia, No Designation, Galling Galla and plenty of others), where there often seems to be a divide between those who do “pass” and those who don’t, with calls for solidarity and attempts to transcend that divide often frustrated.
While it’s not talked about so much, I believe the same is very often true in the disabled community. Nicola at the BBC Ouch blog recently posted about “hierarchies of impairment” and division between different impairment groups; I have often found that one big division, even if not necessarily talked about in those terms, is between those who have “passing privilege” and those who don’t.
One particularly striking example of this is in this article at the Disabled and Proud website (I believe this article has also been published in Ragged Edge magazine, but couldn’t find it there at first look), in which the author describes her experience at an ADAPT conference:
As we waited for the elevator at the San Francisco Muni station the morning of October 21, my friend, Laura, and I could barely contain our excitement. After a long journey from Chicago, we finally made it to San Francisco for our first national ADAPT action. Even though we had both been actively involved in Chicago ADAPT, and in the activities of the National Disabled Students Union, we couldn't wait to experience the "coming home" feeling that many people talk about after attending their first national ADAPT action. It was a typical foggy day in San Francisco, the type of day that makes it very difficult for someone with an immune system disability - like myself - to climb stairs, so Laura and I decided to wait for the elevator. As we were waiting, a voice from behind us said, "You know, you ABs should really take the stairs and leave the elevator for those of us who need and deserve it." After signing this message to Laura, who is Deaf, she and I turned around and found ourselves face to face with a white, middle-aged man in a wheelchair. "We have a new name for you ABs," a young woman in a chair beside him said to us. "We call you Walkie-Talkies." These were the welcoming words that greeted us when we arrived at our first national ADAPT action. Needless to say, the "coming home" experience for us was less than welcoming.
Technically, Laura and I are "walkies." But we are also young women who openly and proudly identify as people with disabilities - young, disabled women who experience disability discrimination in the wider society on a daily basis. When the discrimination comes from within your own community though, it hurts… it hurts really bad. It takes a lot for someone with a non-apparent disability to get to a place where they openly and proudly identify as disabled. The pressures for us to "pass" and deny our disability - and our community - are tremendous. But to finally get to that place of power and pride and then be called an AB or a "walkie-talkie" by someone who you consider to be your sister or brother is devastating.
I wish I could say that this was an isolated instance of ignorance - which is evident in every community, no matter how "progressive" - but I can't. Nor is this a defining characteristic of ADAPT. This "culture of internal exclusion" that we experienced at the national ADAPT action is something that we deal with all the time within the US disability rights movement as people who are not visibly disabled. Take, for example, the time when I shared an experience on the Berkeley disabled mailing listserv about the person who glue a sign to my car windshield that read, "Mentally Handicapped," only to receive the following response from one of my "brothers" with a disability: "Oh no, it's another one of those 'supposed' invisibly disabled people trying to jump on the disability bandwagon again."
The irony of this is that the disability movement (or at least certain sectors of it) has, deliberately or not, in effect constructed in response to wider society's demand for disabled people to pass as non-disabled, a requirement to pass as disabled - which is rather spectacularly missing the point...
(Thankfully, in DAN, the UK's equivalent to ADAPT, I haven't encountered much of the same attitude, and many of its key members have non-physical or non-visually-obvious impairments. I couldn't really guess as to whether there is a UK/US difference overall in this - certainly both the UK and US disability rights movements had their origins primarily in the struggles of people with obvious physical impairments.)
There is a lot of talk about “visible” and “invisible” impairments, which I find somewhat problematic terminology (see for example Cal Montgomery's article "A Hard Look At Invisible Disability", which puts it better than i could), but still often find myself using; also a popular phrase in the UK seems to be “hidden disability”, which I think is also a bit problematic (although I sometimes describe my own impairment as “hidden, but not very well hidden” ;) ). The trouble with the terms “invisible” and “hidden”, IMO, is that they suggest that the impairments in question are not noticeable at all, whereas the reality usually is that they might not be noticed or recognised by most people, but, by definition, an impairment is noticeable in the area that a person is impaired in (I have difficulty seeing how it could meaningfully be an impairment otherwise). (There's also the risk of confusion between "visibly impaired"/"visible impairment" and "visually impaired"/"visual impairment".) Therefore, I think that the terminology of "passing", as originated in the context of racial segregation in the US and South Africa, and repurposed and elaborated by the queer and trans* movements, is a more useful set of terms in which to talk about the issue...
The problem with “passing” and “stealth”, when it comes to liberation movements, is that it’s essentially an individualistic way of seeking one’s own safety, freedom or place in society by moving out of an oppressed or marginalized group, which inevitably compromises one’s ability to fight for the rights of that whole group. It also implicitly upholds the idea that that group does not deserve equal rights, by saying “the best way to get equal rights is to appear not to be a member of a minority” – rather than demanding equal rights without compromise. (This doesn’t necessarily mean that every person who uses “stealth” is working against the liberation of their minority group, or that they, as individuals, are to blame – it can be very legitimately motivated by personal safety, or the person may genuinely be trying to live as if disability, or gender identity, or whatever, didn’t matter – there is a good discussion in the comments here and here about stealth and trans* identity.)
The awkward thing about passing, when you do have a radical commitment to a minority group as a political identity, is it can actually be counterproductive personally, and that it can be very difficult to explain why you don't actually want to. (I remember posting about this over a year ago at the BBC Ouch message board, and encountering incredulity from several "non-passing" disabled people that I could envy the visibility of their impairments.) I have had responses from disabled people in the street to whom I have tried to hand out leaflets about disability rights campaigns that suggested they viewed me, as someone not obviously disabled at first glance, as a non-disabled "do-gooder" handing out propaganda for some charity or "cure"/"healing"-oriented organisation. (As an attempt to counter that, I have attempted to appear "more disabled" by trying to exaggerate my subtler autistic traits (including many of the things talked about in Ballastexistenz's post) to a level of fairly-obvious visibility, but then felt like a "pretender" or "fraud" for doing so.)
(This also serves to highlight the same problem from the other side - the disabled people to whom I hand leaflets about organisations of disabled people are those who I can tell are disabled, and in fact I have fairly often considered giving a leaflet to someone who looked possibly disabled, due to subtler factors such as slightly unusual movement or facial expressions, then decided against it because of the possible embarrassment of getting the response "but I'm not disabled", possibly accompanied by righteous indignation at having been perceived as such. I don't quite know how to outreach to disabled people who are not visibly impaired...)
This is one of those situations where I can recognise that it's problematic, but not really think of any solutions. Obviously there are things I could do, such as wear an item of clothing with a slogan like "Disabled and Proud", or something autism-related, on it, but that's not always practical, and, in any case, would probably still result in people responding by refusing to believe that I am disabled, or even just not connecting the slogan directly to me (after all, people wear T-shirts with all kinds of things written on them that don't actually describe themselves - even in the political sphere, you can, for instance, wear a "Free Tibet" or "Free Palestine" T-shirt without being Tibetan or Palestinian). I could attempt to cultivate a "more obviously autistic" style of moving, dressing or speaking, but that would seem just as "fake" and counterproductive as trying to move, dress or speak more like a neurotypical person, and just as against the entire goal of both the neurodiversity movement and the social model of disability - disabled people (and non-disabled people, for that matter), being accepted as the people they/we are, and society changing to fit us, rather than the other way round.
I do kind of think that people involved in disability activism, particularly in membership organisations of disabled people such as CILs, whose impairments are not obvious do have some sort of responsibility to declare those impairments, though I'm not sure exactly how far that responsibility goes (how much detail is acceptable, for instance) - which, to some extent, arguably goes against the social model principle that impairment isn't what matters in defining disability. I think, however, that this (and the "don't talk about impairment" attitude it engenders, in which for instance it's almost taboo to ask someone what their impairment is, being automatically seen as "medical model") is one of the weaknesses of the most simplistic form of the social model, and that "bringing impairment back in" to the social model is necessary - I've touched on this before here (near the bottom of the post), and am planning to return to it in more detail, but the work of feminist disability theorists such as Jenny Morris is, IMO, vital here. The taboo against talking about impairment has led, in some cases in the UK, to non-disabled people infiltrating and taking over disabled people's organisations by claiming to be disabled without disclosing an impairment.
On the other hand, this definitely needs to be approached with caution, as it could easily lead to the kind of hierarchy-impairment situation Nicola describes, in which "invisibly" impaired, but not "visibly" impaired, people have the onus placed on them to justify that they have a "real" disability. (Not to mention that, in a fully social model world, IMO there actually wouldn't be any real dividing line between an impaired and a non-impaired person...)
There are undoubtedly privileges associated with being able to pass as non-disabled (and these are proportional to the extent to which one can pass, as passing isn't a binary state) - and, when having or not having those privileges can have serious, even critical, effects on one's life chances, I don't think it's reasonable to insist that people who have access to them outright reject those privileges. It gets even more difficult when the passing is unintentional, as opposed to deliberate "stealth" - and, of course, there are all sorts of blurry areas between the two. Where is the line between simply not disclosing an impairment because it isn't relevant (for example, on a job application form where the impairment doesn't directly affect any of the tasks in the job), and deliberately deceiving people? (People have been dismissed over this issue.)
The thing is, passing is never complete - if a person could completely pass as non-disabled in every aspect of life, then they wouldn't be disabled. And not only do those who pass in some situations nearly always not pass in other situations, the same person can pass one day, but not the next day, in the same situation, because there is fluctuation in nearly all impairments, even most of those generally perceived as "stable" (Ballastexistenz explains this better and in more detail, too). To quote the title of one trans* activist's blog, "Nobody Passes, Darling". And I haven't even touched on the issue of undiagnosed impairments - with which people can, as I was for the majority of my life, be passing, or even not passing, without having any idea that they are doing so whatsoever.
In a truly liberated world, no one would need to “pass”, because there would be nothing to “pass” as – there would be no privileged group or class that it would benefit anyone to appear to be a member of. Therefore the concept of “stealth” would be irrelevant, because how much a person would choose to disclose about hirself in any area of life would be a free, individual choice. However, I don’t even really know exactly what that world would look like, let alone if there’s much chance of achieving it…
Edit for more relevant links: Trinity has also posted about “passing” for this carnival here, and Tera of Sweet Perdition posted about the problem with the “visible”/”invisible” dichotomy for a recent carnival here…
(I'll post links to the several other awesome blog carnivals I've read recently, when I can get online for long enough to find them all again...)
This post was, in part, inspired by Ballastexistenz’s (utterly awesome) post for BADD, “Excuses to be a jerk", which “passing” isn’t the primary subject of, but in which she does say the following about the subject:
In a person who is passing, there is also often tension between who they’re trying to appear to be, and who they are. It can look like the usual angstiness some people go through; after all, most people hide certain aspects of who they are in order to fit in. But passing as non-autistic is a bigger disconnect than pretending to like bands you really hate, or even than pretending to like people you really can’t stand, or to feel feelings different than the ones you know you have.
Passing can mean, in its most extreme forms of disconnect, having no or close to no understanding of most of the words one is using, most of the interactions one is engaging in, etc.
...
Be aware that when the above happens, the disconnect is on the level of a disabled person passing as non-disabled, not a whiny person who just doesn’t realize how much like everyone else they really are. Yes, there are things all humans have in common. No, that doesn’t solve the severity of depression, disconnect, and alienation that autistic people often experience when passing, particularly when the person they’re passing as (or being passed off as by others, since passing can be entirely in other people’s heads, too) understands things they don’t. It’s a lot closer to a deaf person passing for hearing (while entirely missing at least 80% of conversations as a result), or a blind person trying to drive a car without crashing it or letting on that they’re blind, or a person from one culture being thrown into a totally alien culture (where nobody’s ever even heard of one’s own culture) with no preparation and trying to pass as comprehending, than a person with certain abilities trying to pretend they are similar to someone with roughly the same set of abilities but a different personality. Not that that’s easy either, but there’s an order of magnitude or two here that needs to not be missed.
Of course, not all autistic people are in a situation where passing is possible, whether due to their own abilities, the expectations of those around them, or both. And passing has gradations, too. It’s not like there are those who pass and those who don’t pass. It’s more like there are those who pass to different degrees, as different things, and in different situations. Passing can also be wholly unintentional and unnoticed, but I’ll get into that later.
(There is so, so much else in that post that I identify with more strongly and deeply than I could put into words right now, and, in fact, huge sections of it perfectly describe me, but that would be spinning off well outside the subject of this post. Suffice to say that it’s one of the best pieces of writing about autism that I've ever read.)
The first place I encountered the term “passing” was in African-American historical literature (which was one of my perseverations during my teens), referring to light-skinned (but categorised as “black” under the segregationist laws of the time, and also culturally “black”) mixed-race people who passed as white in order to get all the social benefits that that status gave them in an openly racist society and legal system. (The main protagonists of such novels in the late 19th and early 20th centuries were very often a young man or woman who passed as white and whose relationship with a white partner turned to tragedy when their “true” ethnicity was revealed.) The place I most often encounter it (and the related notion of “stealth”) now is in the online trans* community (there are very good posts about the subject by many trans* bloggers, including Questioning Transphobia, No Designation, Galling Galla and plenty of others), where there often seems to be a divide between those who do “pass” and those who don’t, with calls for solidarity and attempts to transcend that divide often frustrated.
While it’s not talked about so much, I believe the same is very often true in the disabled community. Nicola at the BBC Ouch blog recently posted about “hierarchies of impairment” and division between different impairment groups; I have often found that one big division, even if not necessarily talked about in those terms, is between those who have “passing privilege” and those who don’t.
One particularly striking example of this is in this article at the Disabled and Proud website (I believe this article has also been published in Ragged Edge magazine, but couldn’t find it there at first look), in which the author describes her experience at an ADAPT conference:
As we waited for the elevator at the San Francisco Muni station the morning of October 21, my friend, Laura, and I could barely contain our excitement. After a long journey from Chicago, we finally made it to San Francisco for our first national ADAPT action. Even though we had both been actively involved in Chicago ADAPT, and in the activities of the National Disabled Students Union, we couldn't wait to experience the "coming home" feeling that many people talk about after attending their first national ADAPT action. It was a typical foggy day in San Francisco, the type of day that makes it very difficult for someone with an immune system disability - like myself - to climb stairs, so Laura and I decided to wait for the elevator. As we were waiting, a voice from behind us said, "You know, you ABs should really take the stairs and leave the elevator for those of us who need and deserve it." After signing this message to Laura, who is Deaf, she and I turned around and found ourselves face to face with a white, middle-aged man in a wheelchair. "We have a new name for you ABs," a young woman in a chair beside him said to us. "We call you Walkie-Talkies." These were the welcoming words that greeted us when we arrived at our first national ADAPT action. Needless to say, the "coming home" experience for us was less than welcoming.
Technically, Laura and I are "walkies." But we are also young women who openly and proudly identify as people with disabilities - young, disabled women who experience disability discrimination in the wider society on a daily basis. When the discrimination comes from within your own community though, it hurts… it hurts really bad. It takes a lot for someone with a non-apparent disability to get to a place where they openly and proudly identify as disabled. The pressures for us to "pass" and deny our disability - and our community - are tremendous. But to finally get to that place of power and pride and then be called an AB or a "walkie-talkie" by someone who you consider to be your sister or brother is devastating.
I wish I could say that this was an isolated instance of ignorance - which is evident in every community, no matter how "progressive" - but I can't. Nor is this a defining characteristic of ADAPT. This "culture of internal exclusion" that we experienced at the national ADAPT action is something that we deal with all the time within the US disability rights movement as people who are not visibly disabled. Take, for example, the time when I shared an experience on the Berkeley disabled mailing listserv about the person who glue a sign to my car windshield that read, "Mentally Handicapped," only to receive the following response from one of my "brothers" with a disability: "Oh no, it's another one of those 'supposed' invisibly disabled people trying to jump on the disability bandwagon again."
The irony of this is that the disability movement (or at least certain sectors of it) has, deliberately or not, in effect constructed in response to wider society's demand for disabled people to pass as non-disabled, a requirement to pass as disabled - which is rather spectacularly missing the point...
(Thankfully, in DAN, the UK's equivalent to ADAPT, I haven't encountered much of the same attitude, and many of its key members have non-physical or non-visually-obvious impairments. I couldn't really guess as to whether there is a UK/US difference overall in this - certainly both the UK and US disability rights movements had their origins primarily in the struggles of people with obvious physical impairments.)
There is a lot of talk about “visible” and “invisible” impairments, which I find somewhat problematic terminology (see for example Cal Montgomery's article "A Hard Look At Invisible Disability", which puts it better than i could), but still often find myself using; also a popular phrase in the UK seems to be “hidden disability”, which I think is also a bit problematic (although I sometimes describe my own impairment as “hidden, but not very well hidden” ;) ). The trouble with the terms “invisible” and “hidden”, IMO, is that they suggest that the impairments in question are not noticeable at all, whereas the reality usually is that they might not be noticed or recognised by most people, but, by definition, an impairment is noticeable in the area that a person is impaired in (I have difficulty seeing how it could meaningfully be an impairment otherwise). (There's also the risk of confusion between "visibly impaired"/"visible impairment" and "visually impaired"/"visual impairment".) Therefore, I think that the terminology of "passing", as originated in the context of racial segregation in the US and South Africa, and repurposed and elaborated by the queer and trans* movements, is a more useful set of terms in which to talk about the issue...
The problem with “passing” and “stealth”, when it comes to liberation movements, is that it’s essentially an individualistic way of seeking one’s own safety, freedom or place in society by moving out of an oppressed or marginalized group, which inevitably compromises one’s ability to fight for the rights of that whole group. It also implicitly upholds the idea that that group does not deserve equal rights, by saying “the best way to get equal rights is to appear not to be a member of a minority” – rather than demanding equal rights without compromise. (This doesn’t necessarily mean that every person who uses “stealth” is working against the liberation of their minority group, or that they, as individuals, are to blame – it can be very legitimately motivated by personal safety, or the person may genuinely be trying to live as if disability, or gender identity, or whatever, didn’t matter – there is a good discussion in the comments here and here about stealth and trans* identity.)
The awkward thing about passing, when you do have a radical commitment to a minority group as a political identity, is it can actually be counterproductive personally, and that it can be very difficult to explain why you don't actually want to. (I remember posting about this over a year ago at the BBC Ouch message board, and encountering incredulity from several "non-passing" disabled people that I could envy the visibility of their impairments.) I have had responses from disabled people in the street to whom I have tried to hand out leaflets about disability rights campaigns that suggested they viewed me, as someone not obviously disabled at first glance, as a non-disabled "do-gooder" handing out propaganda for some charity or "cure"/"healing"-oriented organisation. (As an attempt to counter that, I have attempted to appear "more disabled" by trying to exaggerate my subtler autistic traits (including many of the things talked about in Ballastexistenz's post) to a level of fairly-obvious visibility, but then felt like a "pretender" or "fraud" for doing so.)
(This also serves to highlight the same problem from the other side - the disabled people to whom I hand leaflets about organisations of disabled people are those who I can tell are disabled, and in fact I have fairly often considered giving a leaflet to someone who looked possibly disabled, due to subtler factors such as slightly unusual movement or facial expressions, then decided against it because of the possible embarrassment of getting the response "but I'm not disabled", possibly accompanied by righteous indignation at having been perceived as such. I don't quite know how to outreach to disabled people who are not visibly impaired...)
This is one of those situations where I can recognise that it's problematic, but not really think of any solutions. Obviously there are things I could do, such as wear an item of clothing with a slogan like "Disabled and Proud", or something autism-related, on it, but that's not always practical, and, in any case, would probably still result in people responding by refusing to believe that I am disabled, or even just not connecting the slogan directly to me (after all, people wear T-shirts with all kinds of things written on them that don't actually describe themselves - even in the political sphere, you can, for instance, wear a "Free Tibet" or "Free Palestine" T-shirt without being Tibetan or Palestinian). I could attempt to cultivate a "more obviously autistic" style of moving, dressing or speaking, but that would seem just as "fake" and counterproductive as trying to move, dress or speak more like a neurotypical person, and just as against the entire goal of both the neurodiversity movement and the social model of disability - disabled people (and non-disabled people, for that matter), being accepted as the people they/we are, and society changing to fit us, rather than the other way round.
I do kind of think that people involved in disability activism, particularly in membership organisations of disabled people such as CILs, whose impairments are not obvious do have some sort of responsibility to declare those impairments, though I'm not sure exactly how far that responsibility goes (how much detail is acceptable, for instance) - which, to some extent, arguably goes against the social model principle that impairment isn't what matters in defining disability. I think, however, that this (and the "don't talk about impairment" attitude it engenders, in which for instance it's almost taboo to ask someone what their impairment is, being automatically seen as "medical model") is one of the weaknesses of the most simplistic form of the social model, and that "bringing impairment back in" to the social model is necessary - I've touched on this before here (near the bottom of the post), and am planning to return to it in more detail, but the work of feminist disability theorists such as Jenny Morris is, IMO, vital here. The taboo against talking about impairment has led, in some cases in the UK, to non-disabled people infiltrating and taking over disabled people's organisations by claiming to be disabled without disclosing an impairment.
On the other hand, this definitely needs to be approached with caution, as it could easily lead to the kind of hierarchy-impairment situation Nicola describes, in which "invisibly" impaired, but not "visibly" impaired, people have the onus placed on them to justify that they have a "real" disability. (Not to mention that, in a fully social model world, IMO there actually wouldn't be any real dividing line between an impaired and a non-impaired person...)
There are undoubtedly privileges associated with being able to pass as non-disabled (and these are proportional to the extent to which one can pass, as passing isn't a binary state) - and, when having or not having those privileges can have serious, even critical, effects on one's life chances, I don't think it's reasonable to insist that people who have access to them outright reject those privileges. It gets even more difficult when the passing is unintentional, as opposed to deliberate "stealth" - and, of course, there are all sorts of blurry areas between the two. Where is the line between simply not disclosing an impairment because it isn't relevant (for example, on a job application form where the impairment doesn't directly affect any of the tasks in the job), and deliberately deceiving people? (People have been dismissed over this issue.)
The thing is, passing is never complete - if a person could completely pass as non-disabled in every aspect of life, then they wouldn't be disabled. And not only do those who pass in some situations nearly always not pass in other situations, the same person can pass one day, but not the next day, in the same situation, because there is fluctuation in nearly all impairments, even most of those generally perceived as "stable" (Ballastexistenz explains this better and in more detail, too). To quote the title of one trans* activist's blog, "Nobody Passes, Darling". And I haven't even touched on the issue of undiagnosed impairments - with which people can, as I was for the majority of my life, be passing, or even not passing, without having any idea that they are doing so whatsoever.
In a truly liberated world, no one would need to “pass”, because there would be nothing to “pass” as – there would be no privileged group or class that it would benefit anyone to appear to be a member of. Therefore the concept of “stealth” would be irrelevant, because how much a person would choose to disclose about hirself in any area of life would be a free, individual choice. However, I don’t even really know exactly what that world would look like, let alone if there’s much chance of achieving it…
Edit for more relevant links: Trinity has also posted about “passing” for this carnival here, and Tera of Sweet Perdition posted about the problem with the “visible”/”invisible” dichotomy for a recent carnival here…
(I'll post links to the several other awesome blog carnivals I've read recently, when I can get online for long enough to find them all again...)