Tag Archives: self-identification

Guest Post: I Do Not Suffer From Autism

Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.

I do not suffer from autism.

I suffer when someone calls my way of being a disorder.

I suffer when others invest time and money to prevent people like me from being born.

I suffer when anyone suggests that I might recover or be cured.

I suffer when others feel sorry for me or for the family I have created.

I suffer when I fear that people will consider me broken.

I suffer when my being autistic scares people away.

I suffer when others try to silence me.

I suffer when people suggest that I do not have all the same feelings they do.

I suffer because I must describe my way of being by referring to a medical diagnosis.

I suffer because I live in a society that does not celebrate difference.

I suffer because I live in a culture that does not cultivate sensitivity.

I suffer because I live in an environment that values appearance over substance.

I suffer because I live within a social order that calculates human worth based on productivity and conformity.

I suffer because I live in a world that does not honor the gifts that autism brings me.

I suffer because I have learned to apologize for who I am.

But make no mistake: I do not suffer from autism. I do not suffer from who I am.

[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]

Recommended Reading for November 9

Spoon Theory and Me (It’s all about me)

I’ve been reading about the Spoon Theory and kinda going, yeah, that doesn’t apply to me. (Basically, we all have a number of spoons that represent what we can do that day. Healthy, temporarily able bodied people (age will get us all!! Run!!) have an unlimited amount. Those not so able-bodied do not.)

Thinking about the Spoon Theory and applying it to my life is scary because dammit, if I write down that it hurts, then it really happened and it just won’t go away. If I don’t classify it, it’s not there. Denial is awesome unless WILL YOU STOP STABBING ME. See?

But I do use it, I realized today.

Identity Matters

It brings up some interesting thoughts for me about “what actually is disability?” That’s medical vs social model stuff, but its not just that. Its about the labels we as people with impairments use to define and describe ourselves. What boxes we put ourselves in and how easily or not we communicate with those in the other boxes of disability.

What it is to be a monster

You know you a monster when almost all the depictions of your condition in the media show you as either a joke or a jerkass. It gets to you. You begin to wonder if those you call your friends see you the same way. Are they keeping you around for the crazy antics? Do they like the real you, who ever that may be?

Positive Experiences with Disability Activism

I had some really positive experiences today with some disability activism that I would really like to share. The first two were at work and the third at an after-work conference for language development in the Middle Swan area.

In the news:

Student files suit against U. [Princeton]

Metcalf-Leggette’s complaint asserted that she has four learning disabilities, which were diagnosed in 2003: attention deficit hyperactivity disorder (ADHD), mixed-receptive-expressive language disorder, disorder of written expression and developmental coordination disorder. The conditions, according to the complaint, hinder her ability to focus, process information and communicate in writing.

The suit comes after a series of meetings with school officials during which Metcalf-Leggette sought accommodation for her disabilities. The University currently accommodates Metcalf-Leggette’s disabilities by offering her a “reduced distraction testing environment,” a limit of one exam per day and a 10-minute break each hour, the law journal reported.

Recommended Reading for October 28

Join Marlee Matlin in Demanding Captioning of Online Video Content

Academy-Award-winning actress Marlee Matlin has been using her Twitter account to actively lobby for captioning of all the digital video content that is flooding onto the Web. The issue has rightfully hit a boiling point for the deaf community because Netflix and other services are now streaming video online without captions.

The National Association of the Deaf sent a letter to Netflix Oct. 5 complaining about the lack of captioning for “The Wizard of Oz,” which was available for download free at the Netflix Web site as a promotion.

Matlin points out the irony of a recent video about the Helen Keller statue unveiling at the U.S. Capitol on the CNN Web site that has no captions!

Related: How to add Subtitles and Translations to your Vids, Captioning Sucks!.

Ableism in 30 Rock [Includes an embedded video from HULU that is not available outside of the US]:

A lot of feminists love 30 Rock. As they should: it’s a funny show, and a rarity for television – a women-fueled enterprise with a two main female characters, written and conceived of by a woman. That is Cool, full stop. And 30 Rock has many deft explorations of the many facets of being a white, middle-class, straight, woman with able privilege. But persons with disabilities don’t fare quite as well.

30 Rock trades on ableism on an almost episodic basis. The show’s disrespect towards folks with disabilites, particularly those with visible disabilities, is constant and unrelenting from side gags to b-plots to regular characters. 30 Rock constantly places bodies with able privilege in a position of supremacy above bodies with visible disabilities through humiliation and devaluation. Its abuse of persons with disabilities in the name of comedy goes beyond the casual ableist language like “lame” or “retarded”. Such language is unfortunately ubiquitous to even shows that have been critical of ableism (eg, The Office has critiqued ableism through Michael Scott’s typical obliviousness on a couple of occasions, but, as in life, “lame” and occasionally “retarded” is still a consistent presence) but 30 Rock’s ableism is constant, humiliating, and dehumanizing.

An Example of an Article about FSD [FSD = Female Sexual Disfunction]

I’m still not fully understanding the claim that FSD is profitable. If that’s the case, why is it so difficult for me, someone who falls into the pain category, to find a doctor who is equipped to handle me? My experience is that often, my first line of defense doctors get tired of seeing me after I don’t respond to conventional treatments. I think right now my local gyno probably never wants to see me again.

The article goes on to talk about hysteria. For the most part I don’t find this section of the article to be inherently problematic. Except for the part about “pelvic congestion,” being in quotes, since it is mentioned as a real thing in Heal Pelvic Pain (p. 16)


But the real reason it followed me and stayed there in the back of my mind was the times I thought, “Wait. That’s me.” And then my guilt complexes came in full-force, telling me no, you can’t call yourself that, that’s for people with real problems, any problem you have is just in your head. And maybe most of them are in my head, but well, it doesn’t make them any less real. It doesn’t make it any less hard to me to function or to try and figure out how to fit into society. It doesn’t make my very concrete limitations disappear.

In the news:

Clem7 Tunnel Labeled a death trap for the disabled [Australia]:

BRISBANE’S Clem7 tunnel could be a death trap for the aged and infirm, a disability group has warned.

Queensland’s Spinal Injuries Association said the 4.8km-long tunnel’s emergency exits were too far apart and too narrow for people with mobility problems to escape an underground disaster.

Mr Mayo argues there are no design rules for tunnels but believes this infrastructure should follow the Australian Building Code which mandates emergency exits at every 60m in buildings.

Disability Is …?

(Originally posted July 2009 at Feministe, three rivers fog.)

We had a really good discussion about nondisability. It got derailed, a bit, because it depended on our ability to reasonably define disability. And it’s a subject that has come up in every discussion we’ve had these couple weeks. What is it?

I advocate an intentionally overbroad definition of disability. And I definitely see a tendency, with certain medical conditions, not to identify — on that inner level, what “feels right” — as disabled.

I support every person’s right to self-determination, to define their own experiences, and to identify however feels most right for them. I do not want to try to pressure people into identifying in a way they do not feel comfortable. But I do think that part of this tendency, this reticence, is rooted in a sort of ableism. Not ableism as in “internalized negative feelings about PWD” — but ableism as in “a certain understanding of how the world works and how society is/should be structured” … or, you might say, a certain model.

I want to explore a few things — explore our assumptions behind the word “disabled.”


Think, for a minute: visualize a disabled person. Just a generic idea of a disabled person. What would you say are the requirements to qualify as disabled?

Do you have to be disabled — in a dictionary definition sort of way? Disabled, unable, incapable? Unable to work, or unable to participate in social activities, or unable to take care of oneself? Is there a certain level of un-able-ness one must reach to qualify as disabled?

If so, what do you call the people who don’t reach that level — but who share many, if not all of the exact same problems with accessibility in society, who face the same obstacles in their path, the same ignorance and hostility? The people who have the same condition, but face different accessibility problems because they are trying to navigate the workplace, living independently — who are able to do these things — but who still have to fight with the outside world to be able to live their life how they want to?

Are these people disabled? No? Are they abled, then? Are they privileged over the people who meet that level of un-able-ness?

Am I “temporarily able-bodied” because I can push myself enough to work full-time?
Because I can walk? Drive? Prepare meals? Go to sports events and concerts?
What about the fact that I still have to fight with my doctors over medication? That I still have to approach HR at work to tell them about everything I need to be able to work there?
What about the fact that without the drugs I am taking and my TENS machine and my access to health care and workplace accommodations and accessible parking, all of a sudden I wouldn’t be able to do those things anymore?

Is my disability about my inner feelings when I get home and slouch in pain — is it about what is going on in my body? Because I still have pain, whether I am well-treated and working or untreated and housebound. I still have fatigue. I still struggle when I stand up from a sitting position, still need help getting out of the car if I haven’t taken at least a few painkillers already that day. All that stuff is still there.

Or is it that my disability something beyond me — not having to do with me at all? Not defined by what is going on inside my body, but defined by whether society is working with my body or working against it?


I’m going to let you in on a secret. A lot of us people who do fit the classic dictionary definition of “disabled”don’t feel “disabled” either. We don’t always feel un-able. We feel like “just people.” Normal people living a normal life, just happen to have some sort of neurological or physiological difference, but that isn’t our defining characteristic or something that is always forefront in our minds, it’s just one part of us that doesn’t always make that big a difference in our life at all.


Remember, briefly, the social and medical models of disability.

Under the medical model, a person must justify their claim to disability. A person must fit neatly into a narrow diagnosis with a Latin-based name. The person must be cleanly categorized. Their experiences must fit a prepared check list.

The medical model says that your body fails to be normal in this particular way: so we must devise a way to force it to be normal, and that will solve the problem.

Naturally, such an approach to disability will wind up excluding a good many people who don’t fit those boxes cleanly, who appear close to normal — and that just can’t be right; there must be a logical explanation, like that they are over-worrying, imagining things, that they like being sick and want the world to treat them with kid gloves. After all, there is no proof that they deviate from the normal — so they have failed to justify themselves as different.

The medical model, in this way, denies community and services to people who still face considerable obstacles to full participation in society because they have failed to prove that they deserve that “special treatment.” They have failed to prove themselves as disabled enough. They aren’t “other” enough to be Othered.

The medical model imposes strict and narrow definitions — which become boundaries which must be policed.

What do you do when you’re caught in the middle? Different, but not different enough to be Othered, but still needing services (benefits, accommodations) which are only given to Others.


Informed by the social model, “disability” becomes a marker not for condition (mental or physical) — not for “what I feel inside, what I experience inside” — but instead for the fact that our condition is maligned or neglected (or both) by the rest of society.

Disability is not a matter of my condition, but a matter of the group I am assigned because of that condition.

Perhaps it could be said as such: Disability is not a condition, it is a status.


The classic analogy to explain the social model is this:

Many sighted people have less-than-perfect sight. If assistive devices — glasses or contact lenses — were not so widely available and accessible, many of these people would be prevented from full participation in many aspects of society.

But because society sees fit to prioritize this assistance, to make sure glasses/contacts are widely available and accessible so that every less-than-perfect sighted person can have clearer vision — because society decided that no person should be blocked from access because of hir different vision — this condition is no longer a disability.

This is a useful thought experiment. But it is not a perfect analogy. Many blind people still face considerable access blocks. This only really applies to people who are sighted, but whose sight is not precisely “normal.” Perhaps because society can, for the most part, bring abnormally-sighted people to normal-sightedness, whereas it cannot do the same to blind folk.

There’s a lot to explore here.


The word disability isn’t perfect. I don’t know that I would choose it, were we to start over with a blank slate. Nor do I know that most people who are active in the disability community would choose it.

What I do know is this: people who don’t feel, literal-dictionary-definition disabled, embrace the word and run with it. They can make it something all their own.

Queer is a less-than-perfect word when you consider its literal definition, too. Yet the queer community has decided that they’re gonna take this thing and make it into what they want it to be. And they’re making something pretty damn awesome.

I don’t feel dis-abled. I feel people-are-willfully-ignorant and access-to-good-care-is-restricted-in-unnecessary-ways and the-medical-industry-has-no-respect-for-me. Among other things.

And I’m sure other disabled folk feel why-isn’t-there-a-wheelchair-ramp-for-this-public-use-building and nobody-has-to-accommodate-my-needs-until-they-get-sued-why-don’t-we-have-an-oversight-board-that-makes-them-do-it-right-from-the-fucking-start and you-aren’t-providing-alternatives-so-I-can-access-your-lecture-even-though-I-can’t-[hear-what-you-speak/see-what-you-write/be-there-in-person-at-all]. Among other things.

People who identify as disabled (or are identified as such by society) don’t necessarily always think the dictionary definition of the word applies to them. There are disabled people in wheelchairs or braces who still work, still have families, still go to parties. There are disabled people who appear totally abled yet can’t work, can’t perform certain self-care, and so on.

The word “disability,” in the disability movement right now, already refers to a great variety of individual conditions, abilities, approaches…

And for the most part, when a person appears whose condition challenges the current boundaries of abled/disabled, the disability community is completely ready to revise their assumptions and welcome that person (and hir companions) into the movement.

Because, here’s the thing…


The disability movement has a lot to offer to a lot of different people — not all of those people who may identify as disabled.

And this is part of why I do not want to pressure people to change their identification. They don’t have to identify as a disabled person, or a person with a disability, to still become a part of the disability movement, to benefit from it, to help move it forward.

What I am wanting to do is not change people’s minds about how they individually self-identify. What I want to do is explore the cultural phenomenon that is certain groups rejecting the label of disability.

Anyway: the disability movement is working hard to change the way we approach the world. From an approach that excludes non-normal people to an approach that stops INcluding by certain standards and starts just treating all persons as fundamentally human, period.

Under the current system, when a woman becomes pregnant and plans to keep the child, we expect the child to be free of disability. What’s that refrain from the supposedly-gender-enlightened? “I don’t care whether it’s a girl or a boy, as long as the baby comes out healthy!

When we encounter a person, we expect that person to be abled. When we imagine a “person” — just a generic, default person — we imagine that person as able-normative.

Currently, things go like this: 1. World expects “normal.” 2. Non-normal people come along. 3. Oops!

What disabled people want is more like this: 1. World is prepared for any number of different things. 2. We come along. 3. Hey, we were expecting you!

This approach is what defines the disability movement. We want to change the world so that the world stops treating us as unexpected — and therefore a disappointment — and therefore has not prepared for us — and therefore we have to constantly fight with the world to make it change every little individual thing it has set up wrong.

This approach, applied broadly, has benefits for so many more people than only the classically, dictionary-definition disabled.

This is the world I want to live in (bold emphasis added)…

My body isn’t the enemy, I realized.

It’s not my physical self that creates all my problems.

It’s all the external expectations of it.

Disability isn’t the result of individual defects, deviations from the able-bodied norm. Disability is the result of a society that fails to accommodate these differences.

What if we saw these differences as variation, not deviation? After all, we fully expect our children to be born with any number of different eye colors. Why is it any less when it comes to physical and mental abilities?

Can you shape a world in your mind where there is no norm? What does it look like? How does it differ from the world you live in today? What do you expect of people as a whole in order to support those currently disadvantaged?

The more I think, the more confused I become. It seems impossible to structure society so that everyone is brought to a similar level of ability across the board. But it does seem possible to structure society so that those fully-abled work to make up for those straightforwardly lacking, and everyone works with each other in full expectation of a wide range of ability across the populace, and all of this is seen not as hassling and burdensome, noble and heroic when someone takes it on—but as mundane, everyday, simply expected, no different from separating out your recyclables or driving on the right side of the road: something that everybody does, because it isn’t that hard to do, and it benefits yourself as well as those around you, so it’s stupid and even outright reprehensible not to.

That is the world I want to live in.

[Reading back, I cringe at the use of the words “straightforwardly lacking.” Proof that we are all still learning, still building.]

What if things did happen that way? What if we just rushed to give, knowing that those around us would rush to give back?

and in this POV, the centering of individualism falls apart — because that’s not what life is about. life is give and take, push and pull, you do this for me (that i don’t do well/don’t like to do, but that i want/need) and i’ll do this for you (that i do well/like to do, and you want/need).

disability, really, when you get down to it, is the ultimate unraveling of that ball of individualism — it FORCES you to look at all these little things that go into the living of a life, and realize that not all of them are yours to do or yours to control — and also to realize how many of those little things YOU affect for OTHER people’s lives — and to finally give up, and fall back into the arms of the community.

it means you have to stop looking at things as “mine, yours, this person’s, that person’s” etc. you have to stop keeping the damn tally — and just rush to give, knowing that those around you will rush to give back…

so many people are afraid to admit that ultimately, they DO depend on the people around them, and their accomplishments are not solely their own, and the things they do, affect people besides themselves. but it’s all true! and it’s not a bad thing, if you look at it the right way.

This is everything we are trying to change.

And when we are successful: it will be good for so many people. It will benefit a great many, people who might not consider themselves part of this movement, but who will see their life become substantially easier or better, because this movement has destroyed the system that puts obstacles in their path.


There is a lot people can learn from the disability movement — even if they don’t consider themselves a part of it.

This is why I, and others, explicitly tie our disability activism to our feminism. Believe it or not, there are things that non-disabled feminists can learn from disabled ones about how to refine, how to better our (not their, OUR) feminist movement.

There are things the disability movement is accomplishing that the feminist movement has fallen short on. Things that disability activists are paying attention to that feminists have forgotten.

And it makes a difference in women’s lives.


There are substantial immediate benefits to individuals, as well. Many of you who do not feel “disabled” nonetheless benefit directly from the Americans with Disabilities act and other non-discrimination legislation. And that’s only in the realm of the state (legal sense).

Consider the pharmaceutical industry. The alternative medicine industry. Consider protections on health insurance that prevent companies from discriminating against people with pre-existing conditions or prevent them from denying certain treatments.

These are all things the disability movement has had part in. Often, the disability movement has been the sole force pushing for these things — when other movements fall short, and forget us.

And there is, therefore, substantial benefit to involving oneself in the disability movement. Because it is working for you. So it will do good for you and for us if you directly engage with it — help it refine its purpose — help direct its actions — help challenge preconceptions.

If you will stand with us, if you will be — a friend, or a family member — whatever role you feel comfortable taking, we will stand, sit, lean or lie beside you. We will be there with you, however you identify.

We want more people to engage with us — on an honest, good-faith level.

Some of those people will find themselves beginning to identify as a part of this movement, as a person with a disability. Some people will not, but will remain our friend, our ally.

No matter which: we are happy to have you.


ETA: I really should have included a link to this post from Joel at NTs Are Weird — from the perspective of the autistic community. I ain’t the only one beating this drum! I remember reading this post a long while back, and it has informed my politics a great deal. And I think it is necessary reading for anyone engaging with the disability movement. And he does a great job wrapping up the many elements of this post! 😉 Take it away (bold emphasis mine):

Welcome to the disability community! […]

Yes, that’s right, you’re DISABLED. Yep, you can pick that word apart and tell me why you aren’t, but, trust me, you are. And, no, I don’t mean that you are less or more functional than anyone else. I mean that you are part of a community defined by society’s institutions and programs, a community formed because of our minority status and the fact that society expects certain strengths and weaknesses, and anyone who doesn’t have that same pattern of strengths and weaknesses is going to have trouble in this society.

Yep, that’s the social model. It’s not the “OH MY GOD, I AM SO BROKEN AND LIFE SUCKS AND I WANT TO BE NORMAL BECAUSE EVERYTHING WOULD BE WONDERFUL AND I WOULD HAVE LOTS OF MONEY AND A GIRLFRIEND AND A NICE CAR” view of disability. But it is recognition that we have trouble in society as it is currently set up. You’ll also notice that it is not a view that accepts society as a static, unchangeable, and morally good entity, but rather as an institution that can and should change – even when people have a hard time seeing how it could.

In addition to this, I want you to know that there is “nothing new under the sun.” You don’t need to reinvent disability theory […]

One example – although the victory isn’t yet fully realized – find out why there public transit has to at least make *some* effort at accommodation in the US. Yep, I know it still sucks, and there are tons of problems – I’m not saying anything different. But I can assure you of this: Without good advocacy, there wouldn’t be a wheelchair lift on any bus except one owned by a nursing home – and even that one might not have one.

Find out why people with cerebral palsy can go to US schools today, even if their natural speech is hard to understand, thanks to assistive technology and good law. Sure, schools, technology, and law aren’t good enough yet, but they are way better than they were 40 years ago. Why?

Better yet, learn how you can make a bus in your city more accessible both to yourself and to someone with a different kind of disability. Learn about your schools and what can be done to help others with disability. Not just autistic people, but people with all types of disabilities. Do you know what you will find if you do this? You’ll find out quickly that it also helps you, even if that wasn’t the goal of the movement.

For those of you who are already doing these things – thanks! It’s good for us to stop reinventing the wheel once in a while.


Definitions of disability affect people’s self-identity. Recognizing yourself as disabled and identifying with other people who are disabled and learning about their experiences can all contribute to understanding and interpreting your own experiences, and to knowing that you are not alone with problems you may have believed were unique to you. But being identified as disabled also carried a significant stigma in most societies and usually forces the person so identified to deal with stereotypes and unrealistic attitudes and expectations that are projected on to her/him as a member of this stigmatized group.

– Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York: Routledge. 1996. pg 12.

By 15 October, 2009.    Quotations  , ,  

Recommended Reading for October 14th, 2009

A bit shorter today – Wednesdays are always busy for me!

In the blogs:

if it wasn’t so necessary, the whole thing would be impossible

# all of us are learning about our own disabilities and each others
# hard to figure out who our allies are. in nonprofit industrial complex, when we make a decision that isn’t popular with allies (like using the word “disabled” as a political word of power in our name), we don’t just lose support, ageist and ableist tactics are used to try and take our power
# this is honestly first time a lot of us have been asked: what do you want? what do you see for yourself & yr community?

In the news:

Saving Alex: A Mother Finally Got Desperately Needed Help for Her Troubled Son — By Having Him Arrested

And here comes the dirty little secret of the so-called juvenile justice system. If you have a seriously mentally ill kid, and you can’t afford treatment, you can have your kid hauled before a judge. And if the judge is particularly empathetic, he or she has the power to get services for your kid.

As long as you’re willing to give up custody of your child to the state of Arizona.

[I find this especially troubling in light of the Hyde case here in Nova Scotia.]


Follow ADAPT’s twitter feed as they protest for inclusion in health care reform, housing, and the American Dream. [US] Ms CripChick’s got a report.

Dont Write Me Off [UK]:

There are hundreds of thousands of adults with autism in the UK, all of whom have the right to lead a dignified and fulfilling life. Sadly, the majority of people with autism are not getting the support they need to find a job, and many more cannot access the benefits they need to live on.

The research that we carried out among adults with autism showed some worrying statistics. Among the people we contacted, we found that:

– one third are currently without work or benefits
– over half have spent some time without work or benefits, some for as long as 10 years
– just 15% have a full-time job
– but 79% of those on Incapacity Benefit told us that they want to work.

Through this campaign The National Autistic Society is calling on the Government to make the system fair for adults with autism, so that it takes their needs into account at every step.

October is National Disability Awareness Month [US]

“Expectation + Opportunity = Full Participation” is the 2009 theme for National Disability Employment Awareness Month (NDEAM). Sponsored by the Office of Disability Employment Policy, NDEAM highlights the contribution of American workers with disabilities as well as increases awareness of their challenges.

By 15 October, 2009.    Quotations  , ,