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Joining the Disability Rights Movement

One of the best moves the neurodiversity movement can make, I think, is probably to identify itself firmly with the disability rights movement.

There are many fellow students with various kinds of disabilities at my school; and when I talk to them, I find a huge amount of common ground. They have experiences that are very similar to mine, both sociologically and in terms of the emotional experiences that tend to come with disability, such as the need to outperform non-disabled people to prove your worth, or the experience of being underestimated and told you "can't" do something by someone who has no idea how creative disabled people can get, or even the experience of social ostracism because you seem odd. Not all physical disabilities are obvious; some are invisible. The experience of "playing normal" is common to both groups, even among people whose disabilities are visible.

One obstacle to this alliance is the idea that many autistic people have that they're "not disabled". But that's not true--not in the sense that is most important to the disability rights movement. If you can be diagnosed with autism, you have what's called significant impairment--that is, you've got to either work harder, do things a different way, or get someone else's help to do things that are expected from a typical member of your society. In most cases, though, you can do those things.

The biggest obstacle holding you back isn't that you're autistic; it's the fact that society isn't set up in a way that makes your particular communication style and cognitive traits the ideal arrangement.

And that's what a disability is. It's a mismatch between what you can do, or how you do it, and what society is set up to fit.

I know a lot of times autistic people say they're not disabled because they're good at things. That's buying into a disability stereotype--the idea that disabled people can't be good at things. But, of course, they can. I spent many of my teen years fascinated with physics and in love with the books written by Stephen Hawking. Does his skill as an eminent physicist mean he's not disabled? (Hawking retired recently... *sigh* But he's in his seventies now, so I guess we can't very well demand he keep working so we can get more black-hole theories and books that explain high-level physics to average, if somewhat nerdy, high-school students.)

Disability, basically, is defined by society. If everybody in the world used a wheelchair, then people who used wheelchairs wouldn't be disabled. If everyone in the world were deaf, then deafness wouldn't be a disability. If everyone in the world used telepathy, then not being telepathic would be a disability.

The idea that you're "not disabled" probably comes from a fundamental assumption that disabled people cannot do things they want to do; that disability is inherently negative and makes you inferior; or that disability can only ever create impairments, never advantages. Well, get yourself a realistic idea of disability, and not only will it seem silly to claim you're "not disabled", but you'll realize that disability is neither something to be ashamed of, nor a concept to distance yourself from.

(I need to make an exception here for the people using "disabled" to mean simply "unable to work at a profitable full-time job". If you are using it in that sense, then it excludes most autistic people, as well as most physically and cognitively disabled people. I am talking about disability in terms of the social concept.)

Autistic people are, as a rule, anywhere from mildly to profoundly disabled. Disability can be very mild; it can just be a matter of having to try harder than most people and rest more often. But we have this in common with physically disabled people, too: Someone with mild CP, for example, may walk as quickly as most people, but tire after only a mile instead of five to ten miles as most people would. We have, in fact, so much in common with people with all sorts of disabilities--from the communication issues faced by people with hearing or speech impairments, to the social distance created by interacting with someone who is obviously different, to the issues related to services and accommodations and workplace politics that often make it harder to get a job.

Staying in our little corner of the world, insisting we are not like "those people", we will only be left behind when the largest minority group in the world asserts itself and demands the rights that have been withheld from it for so long. iweb stats

Comments

(Anonymous)

disability vs disabled

I wonder if part of the problem here is the fact that disabilities are used to define people. It's always a "disabled person" rather than a "person with a disability".

It seems to me that a significant portion of Aspies don't regard AS as being separate from them. It's a matter of being an Aspie rather than a person with AS.

But many (most?) Aspies don't seem to have such a significant level of impairment that they can't function without special assistance, many of us did reasonably well for a long time without being diagnosed. So for such people it seems that "having a disability in some situations" would be a more accurate description of their position than "being disabled".

There seems to be a conflict between being an Aspie all the time and being "disabled" in some specific situations.

Russell Coker
http://etbe.coker.com.au/

Re: disability vs disabled

Most people with disabilities don't, throughout most of their lives, need help from anyone else more often than typical people do, but they have those conditions all the time just like we do. Their disabilities are defined by the fact that they need to work harder, rest more, or use different strategies to do whatever they do during their daily lives.

I think the problem is more of a fundamental misconception about disability itself, as being an unsolvable problem that always requires outside help, rather than some difference between having AS or any other condition. I mean, yeah, a cognitive/neurological condition comes closer to your personality than a physical one; but even a physical disability affects who you are. I have a friend with CP, who can walk without support, who has been told that he is "not disabled" because he doesn't need a cane/walker/wheelchair/whatever.

Actually, people with all sorts of disabilities are exposed to the idea that mild disability is somehow not disability because intensive support is not needed. The problem then is that, despite needing more effort or more rest or needing to do things different ways than the typical, the exact same expectations are placed on them. Burnout is common, and can be traced back to the stereotype that all disability must require intensive outside assistance.

Re: disability vs disabled

Lisa--I really like this idea of Taking the Path of A Disabled Citizen, conscious and content in my "disabilities." So why not Leech off of the government--as close to Karma's red tape as we can; while still being of the intelligent class; instead of succumbing to degrading ourselves due to social status, class, race/ethnicity, popular-respect, or any such condescending tactics given to us by our very out FAT CATS who think they're ARISTOCRATS!--suckin on a young man's brain...yeah, power to the people to peaceably rebel against our supressors! AND like Disturbed said, whether you are a rock fan of the razor station in Green Bay, WI 94.7fm, or not, "GET DOWN WITH THE SICKNESS-" because, in the end of tomorrow's beginning, it always makes ya feel good.

L8er Lisa,

R E S P E C T--

Alyssum C. Edwards
I agree completely. There are things I can do very well but for other things, liking dealing with employment and driving, I'm not at the level that society says someone of my age and background should be. My dad said it best, "You do things at your own pace, you always have." I may never be successful in society's eyes. I will always have trouble with being at the levels I'm 'supposed' to be at with different things, so in this society, I am and will be, disabled.

What I 'love' too is having my abilities erase my need for help in other areas sometimes. 'But you're so high-functioning' or 'you can do x, y and z so you must be lazy since you can't do a, b, or c". ....So I absolutely should be able to get and keep a job on my own, work the 40 hour plus week, be able to drive to work....right now. Even though it took me longer than other kids to learn how to ride a bike, even though I still can't properly tie shoes or tell my right from my left without mnemonics. I should be able to do everything when everyone else does because I am just that smart.

What I am good at, I am very very good at and in areas I don't do well in I tend to be horrid.
Also, admitting to disability has made me actually feel entitled to some of the services I truly need.

(Anonymous)

As it happens very often, I find your positions very sensible and realistic. It's a shame that (not to mention the disability community) the neurodiversity community loses time and energy in internal quarrels, without realizing that there is a common battle to be fought.
Your position makes sense, though using the word "disabled" to describe myself bothers me. Still, I do agree with your definition.
I agree entirely, I have been part of the disability rights movement for nigh on 30 years now.

The problem is that if the autistic community insist that they are "normal" that is to say they deny impairment because it is invisible, they lose because they will continue to be disabled not only by the society that does not care whether the impairment is visible or not, and denies rights anyway, they will be self disabling.

The whole notion of "Im autistic, I'm different, the usual rules don't apply, I am better than all of you" is one that is doing the most harm to the autistic rights movement and if we want security of numbers and solidarity, lets end the crap and realise who our allies really are, and build bridges not dig ditches.

And don't forget what Yoko Ono sang "woman is the nigger of the world" by which she expressed a cross disability solidarity, because disability is a property not of the individual but of the rights one is denied, and it cannot be argued that rights denied to women and to black people are not akin to rights denied to people with impairments.
I enjoyed your article, you make many good points in a well thought out way. I was thinking of the old "If a tree falls in the forest" riddle by Berkeley. "If people in society don't perceive anything as a disabling or handicapping condition, do disabilities exist?" As you point out, yes and no. If everyone was blind, color, light, and the electromagnetic spectrum would still exist in the universe, it just would not be available to us to perceive. It wouldn't matter to people. But, just as there is for anyone, there would be worlds out there we would be unaware of. We would need special tools and education to be taught about light and to know it in some alternate way - one definition of a disability. I guess I'm agreeing with the parts of your article that seem objective and wrestling with the more subjective and sociological. But I have been reading a lot of Robert Heinlein all summer.

"The difference between science and the fuzzy subjects is that science requires reasoning while those other subjects merely require scholarship."
Robert A. Heinlein
Sociology still yields to logical reasoning and statistical analysis, though. So it's not all fuzzy.

You're right; I'm not being scientifically rigorous here. What I'm talking about, when I make claims, are educated guesses based on observation, the sort of hypothesis that sparks a research project or gets put into a newspaper editorial. Experiments could be designed to test many of my ideas; but of course I don't have the funding, so the best I can hope is to get my ideas out there for actual sociologists to read and think about. :)

(Anonymous)

Normal

You seem normal to me. I wonder if I have some sort of autism. I generally find most people boring, and have little interaction with them. I do have a group of friends that I find interesting, but we are not "clusterers" so much. We seem to all have our own independence, yet love each other. You go, girl. You're very smart. Don't get caught up in "you have to be like everyone else" BS. Love ya.

(Anonymous)

NPR Story

Hello Lisa:

I read the NPR story about you just a few minutes ago. Thank you for making your observations about neurotypicals public. As someone with nonverbal learning disability (NLD), I sometimes find social interactions rather confusing. However, if I can interpret them (with the help of super-NT friends) through an anthropological lens, I can understand what's going on.

You should write a book of your observations. It would greatly help those of us considered to be atypical!

Regards,
Lillian Baulding
theoddbirdblog.com

(Anonymous)

Thank You!

Hi Lisa,

You were correct in figuring that a lot of people would be visiting your blog due to the NPR story. As the mom of an 8 year old with autism I just want to say "thanks" for contributing to what I consider a limited pool of knowledge. It's always and interesting perspective to hear from people who have autism who are functioning in a social structure that we neuro-typicals take for granted.

I've added your blog to my shortcuts - the only one. I'm not a blog reader, but I think I'm going to learn a lot from you.

Cheers and best wishes!

Amanda

(Anonymous)

your own world

you seem very smart and I wouldnt worry if someone says you live in your own world. I have been told that also. People make their own world and some dont understand that.

NPR -- 8-23-2010

THANK YOU.!.!.! 1. the interview 2. your livejournal 3. you One more reminder that everybody has so much to offer the world. Sincerely, Thank You.

(Anonymous)

depression

I herd the interview on npr. The terms, autism,ADD or depression are very primitive like the term consumption before the bacteria understanding of tuberculosis, I will be happy when we are able to jettison these terms.

You said things that made sense to me.
1. My disability is not the problem. It is intolersnce of my disability that is the problem.
2. The identity of a person is largely composed of the disability.

I wouldn't want my mind to be reduced to the point that I could enjoy the show 'Friends' However, it would be nice to have the credibility of such a nurotypical mind.

For me, trying hard to compensate has been futile.

Re: depression

I think people enjoy shows like "Friends" because they like feeling the emotions associated with the show; and because they like the relationship-oriented humor. It's not meant to make them think very hard; and most people, I guess, only like to think hard some of the time instead of always. Just like abstract art doesn't have to have a sophisticated meaning, silly comedies don't have to have an intellectual purpose. They're simply fun. Not my kind of fun, sure; but I don't really look down on people who enjoy it.

Trying hard isn't generally the answer. Using different strategies, compensating with strengths, and working *around* the problem seems to be a better approach...

(Anonymous)

Disabled and Able

There are ways in which I am, very much, disabled by being an Aspie, and not only because of society's reaction to me. I'm in my early 30's and I can't manage my apartment on my own, my mother still has to help me because I can not organize. When I try to do it on my own I melt into a puddle of tears within 10-20 minutes because I just can't figure it out. Filling out forms is nightmare, I get confused very quickly. There are a lot of things I can't do without help, and getting and maintaining a job is something I'm hoping for, and trying for (working with vocational rehab now), but I've never been able to do that. Maybe having PTSD contributes to much about me that is disabled, but Asperger's contributes its fare share too. The flip side is, as is so often the case, that there are things I'm very good at... not math, by the way (wish I saw more Aspies online who are great at things other than that-- I actually read where a few Aspies referred to another Aspie as not being intelligent, and therefore being more disabled and, hence, more entitled to assistance, simply because she can't do math... made me a bit sick, actually).