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Thursday, January 8, 2009

Pleasure, accessibility and privilege

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

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

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

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

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

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

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

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

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

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

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

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

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

12 comments:

sanabituranima said...

The fact is that everyones pleasure has limits placed on it. No-one can visit every place on earth, read every book, hear every single piece of music, see every piece of art and every naturally beautiful thing, smell every good smell. What one person finds pleasurable may be another person's idea of abject misery.

Part of being human is beng limited. Disabled people have specific limits which other people don't have. Sometimes these are accompanied by extra pleasures (hyperfocus in autistic people being a good example). But it strikes me as dishonest to pretnd that anyone can be unlimited.

Are birds priveledged because they can fly? I don't know the answer, but I don't think that question helps anyone. It is neither possible nor desirabel to turn people into birds.

What I want to see is a world where people live happily withn the limits of their bodies and minds, and no additional, unnecssary limits are placed on anyone by society.

Socrates said...

Hello. It's me. Again.

Just checking in to say Hi, 'cause it's been ages.

May I be so presumptuous as to draw your attention to Prof Baron-Cohen's piece for the BBC on pre-natal testing and Autism?

It scares me. Scares me because I realise that there's many, many people that would prefer that people like us were never born.

Someone wrote about the nazis:

The fact that the enveloping conceptual framework was medico-demographic rather than xenophobic-racist, should not obscure the fact that both derived sustenance from the same source

The source of the concept of "the lesser value of our lives".

Double-Barrelled's asked for a debate, and I'm not up to speed...

Lindsay said...

Are birds privileged because they can fly? I don't know the answer, but I don't think that question helps anyone. It is neither possible nor desirable to turn people into birds.

What I want to see is a world where people live happily within the limits of their bodies and minds, and no additional, unnecessary limits are placed on anyone by society.


I agree with this, with some reservations: when the "limits of [people's] bodies and minds" are things they would rather not have, and can be treated or cured (like, say, depression) and where lack of treatment could severely injure or kill them (say, diabetes), I think there's a moral imperative not to tell them they should just accept their limitations!

What I think you were getting at, that I do wholeheartedly endorse, is moving away from a single standard of what a good, healthy human life is, and toward a different standard for every individual, one that respects the things that make them different from others and seeks to minimize their pain/difficulty and maximize their pleasure and autonomy.

And I am 100% with you on the point that nobody should feel guilty about having pleasures that are inaccessible to some people.

As someone who is not physically disabled, I'm in about the same position Shiva is. As someone who's participated in athletics for most of my adolescent and adult life, I have some pleasures that are inaccessible, not only to people with physical disabilities, but also to "average" people. That has never bothered me.

The one context in which I think we (able-bodied disabled people) should tread lightly is in the disability-rights movement. We don't know what it's like to have buildings, vehicles or other places physically inaccessible to us, or what it's like to have to depend on other people for basic self-care. So, whenever possible, when they are talking about what they experience and what would help them, we should shut up and listen, and we should be mindful that our own discourse about accessibility is broad enough to include them.

Ultimately, though, I think the access-to-pleasure thing isn't exactly comparable to other scenarios of privilege. It's more of a tradeoff. Each person, able-bodied or not, has a lot of random constraints on their ability to experience things.

Cereus said...

That was a very good post, although most of yours are. And I generally agree with it.

I wish I had more time to comment.

Anyway.. I've discovered I have the same problem with the cold that you do after voyaging to the Northeast. You're welcome to come visit the desert! there are lots of hiking trails and the weather is wonderfully warm. :)

Linda Edwards said...

Its right that the social model has been criticized for its aversion to questions about the body and embodiment. However the most powerful critique of this has come from feminist disability scholars such as Margaret Shildrick who insist that the distinction between the body and culture must also be deconstructed. It is this critique that has allowed us to begin to question the meanings that are abscribed to bodies, and also, equally importantly, to focus upon and question the premused stability/independence/autonomy of the able body. Drawing upon Shildrick's work, I have found it useful to think about the body, all bodies, not only the disabled body, as always already vulnerable.

Oliver A. FP said...

I don't know...

I don't know.

I just want to say that you describe how happiness/pleasure feels incredibly well.

(It's past my bedtime, all right? I'll think long thoughts about this topic in the morning :-D)

Ettina said...

Another note is that if something (such as long walks in nature) is important enough to a person, very often they can find some way to accomodate their disability to do it. For example, by going on wheelchair-accessible hiking trails, or whatever. Of course, attempts to obtain these accomodations can be thwarted by other people, such as park designers who don't think about disabled people...

sanabituranima said...

I agree with this, with some reservations: when the "limits of [people's] bodies and minds" are things they would rather not have, and can be treated or cured (like, say, depression) and where lack of treatment could severely injure or kill them (say, diabetes), I think there's a moral imperative not to tell them they should just accept their limitations!

Yes, I see what you mean. I live with depression and the sooner this is over the better. I have a dividing line in my mind between disability and illness, which is perhaps something of a false dichotomy.

There are some things which people want change but which can't be changed (I have come accross lots of autistic folks who want to be cured, for example.) I can imagine that if I lost certain abilities I'd want them back. I can't imagine NOT wanting to be able to see, for example. But I can imagine going blind and still finding lots of pleasure in life, and heightened pleasure in my other senses as these became more important to me.

As someone who is not physically disabled, I'm in about the same position Shiva is. As someone who's participated in athletics for most of my adolescent and adult life, I have some pleasures that are inaccessible, not only to people with physical disabilities, but also to "average" people. That has never bothered me.

I agree with what you're saying and I think most people have pleasures which are inaccessible to the majority of human kind, because everyone has a unique combination of tastes and talents.

The one context in which I think we (able-bodied disabled people) should tread lightly is in the disability-rights movement. We don't know what it's like to have buildings, vehicles or other places physically inaccessible to us, or what it's like to have to depend on other people for basic self-care. So, whenever possible, when they are talking about what they experience and what would help them, we should shut up and listen, and we should be mindful that our own discourse about accessibility is broad enough to include them.

Again, I agree. "Shut up and listen" is almost always good advice.

sanabituranima said...

This is supremely relevant:
http://ballastexistenz.autistics.org/?p=204

sanabituranima said...

Sorry I'm posting so much ( I really should do some work) but I need to clarify this:
"I can't imagine NOT wanting to be able to see, for example."
What I mean there is that the ability to see is something that has been a major part of my development as a person and has been integral to every experience I've ever had, and part of my identity is wrapped up in that ability. I can imagine if I had been born blind and my other senses were more important to me and I had lived my life immersed in blind culture I would not want to see then. But as I am now, I cannot imagine not wanting to see, not because I am "superior" in some way but because it's part of who I am and how I live. (And also, I have to be honest, there are a lot of societally-enforced priviledges I do not want to give up, but even discounting those I would not want to lose that part of myself.) I could equally have said "hear" or "walk" or all osrts of other things for "see", it's tjust the first thing that sprang to mind.

Lindsay said...

"I can't imagine NOT wanting to be able to see, for example."
[A]s I am now, I cannot imagine not wanting to see, not because I am "superior" in some way but because it's part of how I live and who I am. ... I could equally have said "hear" or "walk"


Oh, I understood that was what you meant.

I have similar experiences about sight --- one of my favorite things about being autistic is my capacity for visual hyperfocus; I've blogged about perceiving things like blades of grass or grains of sand individually, which in the right light can make the ground look like an endless hoard of tiny jewels. The world has a dreamlike quality for me because of this "hyperreality" that makes it amazingly beautiful, and I couldn't imagine giving that up.

Ironically, I have often fantasized about being without hearing. I am hypersensitive to noise, and that hypersensitivity is much less pleasant than my visual one. Even everyday background noise can cause me pain. I do, frequently, think that my life would be better if I could not hear, and I say that as someone who really, really loves music.

shiva said...

Sorry for not getting back to this for so long.

Sanabituranima and Lindsay: I think i pretty much agree with near enough all of what both of you are saying. I think, yes, the guilt probably isn't justified (tho i'd really love to get someone like Cripchick's or WCD's thoughts on that), but also, in large part it comes from the maybe-not-actually-but-feels-like-conflict between the activities and my friendships with people to whom they are not accessible...

Socrates: I'm aware of the stuff about pre-natal testing, and might post on it, depending on if i get time to. This is a pretty good article (by someone on the Politics of Autism list), tho: http://www.guardian.co.uk/commentisfree/2009/jan/14/autism-health (don't quite have the energy to get into the comments, but several other friends/comrades are there - dinahkcm, for example)

Linda: Ooh, i haven't read Shildrick. It sounds like she's saying very similar stuff to what Jenny Morris and Liz Crow have said, but perhaps taking it a bit further in an embodiment perspective. Will have to try to track some of her stuff down...

Oliver: Thanks for the compliment, although i *always* find my writing style on re-reading my posts to be really clunky and horrible, and anything that's anywhere near poetic in it to be very far from original. But i'm glad you liked it...

Ettina: true, and Laura Hershey talks about that - but there are limits to that - not everything can be made accessible to everyone.

Sanabituranima - thanks for that Ballastexistenz link - it is indeed supremely relevant, and was probably somewhere in my subconscious mind when writing this. Extremely true (and also probably relevant to the post about inclusion and "mainstream" culture below this one...)

Lindsay - interesting about the sound sensitivity thing - my experiences can be very similar to yours (some background noise can be unbearable to me, such as children crying or shouting, especially on buses, or things like drills or car alarms), but i would definitely fall on the side of wanting to keep my hearing so that i can enjoy music rather than lose it - in fact, losing my hearing would quite possibly be the one acquired impairment that i *really* couldn't tolerate - but then, even if two people have exactly the same sensory issues (which is itself highly unlikely), the decision of which pleasure/pain trade-offs are worth it is entirely individual...