Archive for Ableism

So What’s a Social Disability, Anyway?

February 19, 2012 Rachel Ableism, Communication, Community, Loneliness

As many of you know, I’m in Santa Cruz for two months to visit my daughter and, as an added bonus, to escape the Vermont winter. Or, should I say, those were the two reasons, in order of importance, that I got on the train in Springfield, Massachusetts on January 21 and ended up in lovely Santa Cruz three days later.

But now I realize that I came out here for a third reason: to take myself out of my accustomed context so that I could see myself, and the world in which I live, more clearly. In other words, this visit has quickly turned into a spiritual retreat of great intensity — one in which I’ve come face to face with myself, with the ways in which I relate to the world, and with the ways in which the world relates to me.

One of the things that has struck me since I’ve been out here has been a sense of deep loneliness. It’s not the loneliness of missing my husband, my friends, my familiar places, or my routine. It’s a much deeper loneliness, one I’ve had all my life. I’ve always felt as though I’ve been walking through the world alone.

Yes, yes, I know how self-pitying that might sound in the ears of some, but believe me, I have no pity for myself on this score, nor do I blame myself for feeling as I do. And yes, yes, I know that the word autism means self alone, and that someone reading this piece might be tempted to say, “You see, she’s talking about what autism is,” as though that is what I mean to say. Believe, me, that is not what I mean to say, at all.

I’m not talking about what autism is. I’m talking about what happens to autistic people in the world.

Autism is not a condition that, in essence, automatically renders one alone and apart. How could it be? One can only be alone and apart when other people don’t give access, don’t make space to allow you to be as you are, don’t provide a place to belong. And I’ll tell you something else: to say that autism automatically renders one isolated is to let everyone else off the hook for their failures to accept, to engage, and to respect us. I’m not saying that some of us don’t like being alone. I’m not saying that some of us don’t prefer it. I’m saying that for a great many of us, it’s not a choice we make, but a socially constructed condition we can’t escape.

I’ve been looking very closely at my interactions with other people. What I’ve noticed, as usual, is that I have all the same desire for interaction as anyone else. I may need a different kind of interaction, but the desire to connect with my fellow human beings is thoroughly intact. The “problem” (as the society in which I live is quick to tell me) is that my hearing, my information processing, and my communication are atypical. I don’t read neurotypical social signals well at all. I can’t hear what people are saying very consistently when there is ambient sound. I have auditory delays that don’t allow me to keep up with conversations when they go too quickly, and it usually takes me time to reflect on what I hear before I can come out with a verbal response. Put me in an environment with a lot of sensory information coming through my largely unfiltered system, and it’s no wonder that I have been known to either falter over my words, or talk a blue streak before the sensory overload hits critical mass and I have to leave.

None of these things will change. They have always been there, and they will always be there. That is in the nature of my disability. This is neither a gift nor a curse, an adversity delivered to bring me greater spiritual awareness nor a tragedy of epic proportions. It simply is. I have long since left behind the idea that I ought to be someone else. I am who I am. What I’ve come to realize, though, is that my auditory delays, my unfiltered sensory processing, and my verbal challenges are the absolute bane of my social existence. And the question I have found myself asking as I’ve cried myself to sleep at night is, “Why the hell should these things render me so isolated?”

Now, most people would answer that question by saying, “Well, don’t you see? You have a communication disorder, a social disability, a failure to connect in the world of  normal people. What do you expect?” And what I would like to point out to such people is that, as David Smukler has articulated so insightfully, communication is a two-way street, in which both parties attempt to understand the other. Unless you’re simply attempting to evade responsibility for your part in an interaction, you cannot locate a communication problem in only one person:

Both communication and social interaction, by definition, require more than one person, and difficulties in either area should properly be located between individuals
and not within one individual. (Smukler 17)

I am painfully aware, more than I have ever been, of the level of social exclusion, impatience, and outright hostility sent in the direction of people with disabilities. We autistic people are far from unique in this, and it comes from exactly the same attitude: Disabled people are just too much trouble. They just hold everyone back. Why should we have to slow down for them? Who cares how they feel?

Pardon me, but I care. I care about how everyone feels. So, I will ask the question: How would a social interaction work to make someone like me an equal partner?

First of all, it would take an understanding that there are many ways to communicate, and that one is not better than another. Losing that Why is she being so weird? look when I’ve clearly missed a signal would be an excellent beginning. So I can’t read nonverbals. So what? So I need a little extra time to find the words. Big deal. So sometimes, my words go up over mountains and down through valleys and around in circles before I know that I’ve made myself clear. Get over it. It’s not going to change, and my inability to change should not mean social exclusion.

Second, inclusion would require someone slowing down for me so that I can process what I hear and come up with a proper response. I do not think this is too much to ask — any more than I think it’s too much to ask that an able-bodied person give space to someone attempting to board a bus in a wheelchair, or that a hearing person take a moment to write back and forth with a Deaf person ordering food in a restaurant. The fact that able-bodied people become impatient and even hostile is appalling. Really, people. Where are you all going in such a damned hurry?

Third, inclusion would necessitate an understanding that there is absolutely nothing required in the way of superhuman patience to actually communicate with a person with a disability, and that stopping to listen to someone with atypical communication, far from being a heroic or charitable act, is an act of bringing a fellow human being into human community. Let me put this bluntly: Social inclusion and interaction, when someone desires them, are basic human rights that no disabled person should have to request, and that no able-bodied person with an ounce of ethical understanding should refuse. Treating people like human beings is not some sort of saintly act of altruism restricted to the most holy among us. In fact, according to Tobin Siebers’ brilliant formulation, it is an act that makes us human:

Humanness is defined by the aspiration to be human but in a paradoxical way that includes as part of that aspiration the requirement that one concede to other beings the status of human being in order to be recognized as human oneself. Conceding someone the status of human being, I note, is not so much a matter of giving them permission as just letting them be as human. (Siebers 93)

Fourth, creating social connection would require people to get it through their heads that however uncomfortable, awkward, or annoying it may feel to deal with someone who puts out unexpected nonverbal signals (or none at all), or who speaks in an atypical manner (or not at all), it doesn’t hold a candle to how excruciating it is to go through the world isolated because people just feel too uncomfortable, awkward, or annoyed to deal with you. The discomfort, awkwardness, and annoyance of able-bodied people may only last a minute, or a half hour, or an hour, and then they go back to their regularly scheduled lives. Please imagine how it feels to keep meeting up with a world full of people who turn away, every day, because their discomfort trumps our longing.

And fifth, it is vital that able-bodied people consider how soul-wearying it is to keep trying until one finds those people who simply accept the awkwardness — my awkwardness, their awkwardness, our awkwardness — and make a connection. It is painful to engage in social interactions in which everything is fine until you show how atypical you are, and then the energy shifts, subtly and unmistakeably, from Glad to meet you! to Oh, I thought you were normal. When I see parents wanting to train their children to “pass,” I just want to shout, Passing only goes so far. Then people find out who you really are.

No wonder disabled people end up socially isolated. It hurts the heart to keep going out and trying. And then we end up being told that we’re narcissistic about our difficulties, that we don’t try hard enough, that we just need to be cheerful and act normal and everything will be fine.

Yeah, right.

So what I want to say to all the folks who have not been diagnosed with a social disability: What is keeping you from extending a word, a listen, a desire for connection to us? And how does your failure to use your social skills to bring other human beings into community translate to a social disability located in disabled bodies, rather than in the able-bodied world?

—

Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2011.

Smukler, David. “Unauthorized Minds: How ‘Theory of Mind’ Theory Misrepresents Autism.” Mental Retardation 43, no. 1 (February 2005): 11-24. doi: 10.1352/0047-6765(2005)43<11:UMHTOM>2.0.CO;2.

© 2012 by Rachel Cohen-Rottenberg

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On Passing, Overcompensating, and Disability

February 12, 2012 Rachel Ableism, Disabilities

Lately, I’ve been troubled by articles in the New York Times and The Daily Beast that imply that people with Asperger’s are not on the autism spectrum, but are merely shy or quirky. I’m not going to get into discussing the specific content of the articles, because Emily Willingham has already done a brilliant critique of both pieces.

What I want to address, from a different perspective, is the idea that anyone who “passes” as non-autistic for some portion of their lives (and by “passing” I mean “acting in a way that doesn’t look like someone else’s autism stereotype”) can’t possibly be autistic. This line of reasoning is so old and hackneyed that it’s rather wearying to keep speaking to it — mainly because it’s difficult to know exactly how. If I start describing all my difficulties for someone asking me to “prove” it, I’m blowing my privacy and giving away my power; after all, if I assert a disability identity, I certainly shouldn’t have to explain how I came by it. Besides, the whole act of explaining is a fool’s errand, because in the discourse of autism, if I can explain what autism feels like for me, I can’t be autistic.

I’d been rather stuck in this quandary for some time, and then yesterday, I was reading Tobin Siebers’ Disability Theory, and I stumbled across a passage that was, in a word, life-changing. It touches upon the ways that the late Irving Zola adapted to living with the fatiguing effects of post-polio syndrome:

“Piqued at continuing to inconvenience myself,” Irving Zola writes, “I began to regularly use a wheelchair” for excursions to the airport. “I thought that the only surprise I’d encounter would be the dubious glances of other passengers, when after reaching my destination, I would rise unassisted and walk briskly away.” (205). Zola is able to make his way through the airport at the beginning and end of trips, but the overuse of energy may mean that he will not have enough strength later in the day or the next day to meet his obligations. He turns to the wheelchair because traveling requires overcompensation, and people with disabilities are never more disabled than when they are overcompensating. “Just because an individual can do something physical,” Zola argues, “does not mean that he should (232).” (Siebers 107)

Pause a moment to take in the key statement in this passage:

People with disabilities are never more disabled than when they are overcompensating.

For so many of us on the spectrum who can “pass” to one degree or another, especially those of us who were diagnosed in mid-life, overcompensating is how we have lived our lives. For most of my life, I struggled to hear people in noisy places rather than simply blocking my ears and easing the impact of noise on my nervous system — the equivalent of Zola using a wheelchair to get through an airport. I sprinted to keep up with rapid-fire conversations, despite my auditory delays, my inability to use nonverbals, and my need to translate all of the words flowing like an endless caption in my head to speech. I smiled politely in conversations that bored me to death while struggling just to keep up with the words, and I said all the “right” things in response — or did I? I was gracious to people who recognized my difference despite all my spectacular attempts to hide it, and who drew away from me because I wasn’t like them. I spent most of my childhood and young adulthood learning social rules, only to find that they only went so far, and then I kept trying doggedly to make them work for me anyway. And I did all of these things, every day, for decades, until I was exhausted beyond most people’s comprehension.

I overcompensated wildly to do all the thing that “normal” people are supposed to do, and now that I’ve done them, I’m told that I must be “normal.”

I realize now that those who say such things don’t simply misunderstand autism. They misunderstand disability. They are wholly unaware of the amount of overcompensation we must do just to keep up with a world made for able-bodied people.

Let’s get this straight: Overcompensation is not an indicator of normalcy. It’s an indicator of disability. And the oddest part of a distinctively odd life is that many of us have been disabled from birth without knowing it because we were so good at overcompensating. We are rarely talked about in disability circles, where one hears of two separate groups: Those who were born disabled, and those who became disabled as the result of illness or injury. Always in these representations, those who were born disabled tend to have an easier time with disability identity than those who became disabled later on and have to deal with the disjunction of past and present selves. But where do we late-diagnosed folks fit into this rendering? We are disabled from birth, but we didn’t know it until later. And because we didn’t know it all those years, and just lived our lives overcompensating with every breath, we are told that we are not disabled now and that we never were.

Many of us get weary answering the doubters, because there is no clear paradigm for addressing our particular paths. But overcompensation is a huge part of understanding our experience of disability and disability identity. I thank God that I gave myself the permission to adapt, to rest, and to work around my disabilities before I exhausted myself any further. All of those actions — overcompensating, adapting, and resting — are signs that I am a disabled person, appearances notwithstanding.

—

Siebers, Tobin. Disability Theory. Ann Arbor: The University of Michigan Press, 2011.

© 2012 by Rachel Cohen-Rottenberg

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Let’s Get Something Straight about the “Autistics Prefer Animals” Trope

February 6, 2012 Rachel Ableism

This “autistics prefer animals” trope has bothered me for a long time.

It’s partly the implication that we inherently care about animals more than we care about human beings. Speaking for myself, I love human beings. I am passionately concerned with the welfare of human beings. I carry enormous suffering inside my own body when I think of the injustices endured by human beings.

That doesn’t mean that I can’t love other sentient creatures. I can, and I do. To me, it’s all one.

And then, there’s the implication that, by virtue of being on the spectrum, we all have some sort of preternatural bond with our non-human friends. Like all generalizations, this one hides a great deal of variation: Some autistic people are gifted with animals, some autistic people just happen to enjoy them, and some autistic people can’t stand them. In other words, we’re rather like other people. Surprise!

But truth be told, what bothers me most are the reasons adduced for why some of us bond with animals. Take, for example, this particularly simplistic explanation from Simon Baron-Cohen:

“Many people with autism also form very strong emotional relationships with their pets, worrying about their welfare, and find that whilst they struggle to ‘read’ human behaviour and human intentions, they can read the arguably more predictable behaviour of a pet.”

So, we have two assumptions here: 1) pets are predictable and 2) we like our pets because they are predictable. As for the first assumption, anyone who has ever been around animals knows that they are not predictable creatures and that they can be very hard to read. My cat insists on going out the back door, except when she insists on going out the front door, and this preference (along with a number of other preferences) looks entirely random to my human eyes. She also has a wide variety of vocal tones that I am not gifted enough to read, and it’s clear that it’s the bane of her existence that I don’t understand them. Of course, a dog will predictably come running when you put food out, but most humans will, too. It’s called being hungry.

But the more disturbing assumption is that our love for animals derives purely from our neurological wiring, and stands as evidence for the tired old idea that we, and we alone, can’t grok where other people are coming from — as though able-bodied people walk around drenched in awareness, insight, and empathy regarding the social and physical experience of disability. It’s absurd on the face of it. And this is where Baron-Cohen’s theories become unbearably reductive: all behavior derives from the neurobiology of the individual, with no room for a complex array of other factors. God forbid that someone who insists upon the importance of social behavior should take a look around at the social contexts in which we autistic people find ourselves. He might find a number of compelling reasons that some of us gravitate to four-legged creatures.

Do you want to know why I love animals?

I love them because they don’t carry stereotypes around in their heads and judge me according to them.

I love them because they just don’t care where I fit on the social hierarchy.

I love them because they see me as a person — not as a traveling disability rights workshop, not as a perpetual role model, not as an inspiration, and not as a set of wrong-headed assumptions.

I love them because they don’t care if I stim, they don’t care if I block my ears when I go to the store, and they don’t care if I focus like a laser beam on a task in order to control the information pouring through my senses.

I love them because they don’t notice my awkwardness, and because if I’m having a bad day, it’s not a disappointment to them.

I love them because they don’t create hierarchies of normal and abnormal, where some of us rate and some of us don’t.

I love them because they don’t attempt to speak for me as though they are the experts on my mind and body, and I am not.

I love them because they provide respite from the relentless outsider status accorded to me as a disabled person by my society.

In other words, I love animals because, if they are predictable at all, they predictably do all the things that human beings ought to do, but fail so miserably at. My love for animals has nothing to do with autism, and everything to do with a yearning for a world in which other human beings put into action the kind of awareness, insight, and empathy they purport to have in such abundance.

© 2012 by Rachel Cohen-Rottenberg

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Amelia Rivera’s Story: Deconstructing the Bigotry

January 18, 2012 Rachel Ableism

Over the past few days, the story of Amelia Rivera has made the local, national, and international news. It’s been picked up by such media outlets as the AP, NBC News, ABC News, Good Morning America, Fox, and CNN.

It’s nothing less than a miracle that this story has gotten so much attention, and it’s due to the efforts of thousands of people who are still shouting from the rooftops that what is happening to Amelia is wrong. I’m thrilled to see the story getting so much press.

But the exposure is also bringing the bigots out of the woodwork. In the comments sections, they’ve shown up in force, saying the same things, over and over, and patting one another on the back for how sensible they’re being.

To the unpracticed eye, they may not look like bigots. They’re not sprinkling their comments with racial, ethnic, or anti-Semitic slurs. Most of them aren’t throwing around words like “retard” or “mong.” And some of them are quite well-spoken, talking about “hard choices” and “cost effectiveness” and “quality of life.”

But beneath all of it — all of it — is a pervasive devaluation of the lives of disabled people. This devaluation is so pervasive that it’s like the air these people breathe: invisible and unnoticed. They don’t even question its existence. And with devaluation comes bigotry, just as surely as the sun rises in the morning.

I’ve been advising people not to get caught up in arguing with the commenters. I’ve left a response on a few stories, mainly to speak up for Amelia — and for all of us — for the sake of people who are open to questioning their assumptions. But I will not attempt to argue with a hatred that devalues human life; to do so is to assume that people are being rational when they are not. And I’m not going to read all of the comments, because they’re variations on a theme, and I’ve heard the song more times than I’d like to remember, and I could sing it to you by heart.

But I want to speak to the main tropes, because anyone with an interest in these issues is sure to run across them, and I’d like to help untangle what’s going on. And, truth be told, my interest is also personal: If I don’t deconstruct the mind-numbing bigotry in what I’ve read, I’ll be snarling at the comments inside my head for days to come.

1. Amelia should not get the transplant because the taxpayers will have to pay for her care for the rest of her life.

First, of course, we have a human life valued in dollars and cents. Second, we find the rather stark omission of the fact that able-bodied people reap the benefits of a society built just for them, and that disabled people are begrudged whatever we happen to get for ourselves. And third, we get the familiar trope of a disabled person as a burden — as though it were not an honor and an expression of our highest humanity to help to care for any person, disabled or not, and to provide the most dignified, safe, and fulfilling life possible.

2. Amelia shouldn’t get a kidney. A transplant is a precious gift. The kidney should go to a more deserving person who will have a normal, healthy, productive life.

Note the ellision of “deserving” with “normal.” Note the ellision of “healthy” with “normal” — as though a disabled person cannot also be healthy. Note the ignorance that says that to be disabled is automatically to suffer. Note the utter lack of consciousness that we suffer because of these kinds of statements and the kinds of discrimination they lead to. And, most importantly, note the pernicious idea that “normal” people are more deserving than disabled people because they can be “productive” — as though productivity and human worth were exactly the same thing, and as though human worth were not inherent in every person

3. Amelia’s parents are being selfish. The poor child. They should just let her die.

This is a version of Wouldn’t she be better off dead? Of course, this statement derives from a fear of disability on the part of able-bodied people, who would consider it a tragedy to be anything other than “normal.” It does not derive from any knowledge of Amelia’s present condition, which is wrongly assumed to be miserable. And it implies that the parents should just throw the child away, like a broken car part — an implication that would never be made were Amelia an otherwise able-bodied child who needed a transplant to save her life.

4. Amelia is only three years old. How can you put a cognitively disabled child through a painful procedure she has no way of understanding?

By this logic, you shouldn’t put any child through any painful procedure to preserve life. And make no mistake: If Amelia were a non-disabled child being denied a transplant, these same people would be screaming about medical neglect. The double standard is revealing.

5. Amelia’s doctors couldn’t possibly be denying her a transplant on the basis of her cognitive status alone. Amelia’s mother must have misunderstood — either that or she’s just trying to start a media storm.

In other words, Amelia’s mother is misrepresenting what happened. Of course, there is no basis on which to make this assumption. In fact, it bespeaks an extreme level of denial about widely accepted discrimination against intellectually disabled people when it comes to organ transplant, and it reflects a deep desire to rest easy in one’s illusion that doctors are always fair-minded and always exercise good judgment. If anyone says anything to threaten that illusion, as the Riveras have done, the response is that they either have some sort of hidden agenda or simply can’t grasp what’s being said to them. So rather than acknowledging that authority figures are human, and that some of them say unbelievably cruel and messed-up things, they attack the Riveras as being duplicitous or stupid. Or both.

6. I’ve had a transplant and have gone on to live a normal life, so I know the vetting process. It’s very complicated. They don’t just disqualify people based on intellectual ability.

This statement ignores the obvious fact that just because an otherwise able-bodied person wasn’t discriminated against, it doesn’t mean that discrimination doesn’t exist. This is like a white person saying, “I’ve never been discriminated against in a hospital, so it must not happen to people of color.”

What can you say to that except, “Wake up”?

7. We have to make these decisions based on quality of life, and disabled people have less quality of life, so they shouldn’t get the transplants if there are “normal” people waiting.

The assumption here is that disability is inversely correlated with quality of life: the more disabled you are, the less quality of life you have. Of course, there are many disabled people with a very good quality of life, and many non-disabled people with a very poor quality of life. Beneath the assumption that disability means poor quality of life is another: that if we do have a poor quality of life, it’s because of the condition of our bodies, not because we live in a society that discriminates against us at every turn. So rather than question why a disabled person might have a poor quality of life, people locate the problem in the disabled person.

It’s an excellent way to avoid making social change. After all, if the society just lets people like Amelia die, so the logic goes, the problem is solved, and everyone is absolved of responsibility. Except, of course, that no such absolution is possible.

8. There aren’t a lot of organs out there, and people need to make rational, objective, cold, and calculated decisions about who gets them.

The decision to deny an organ transplant only on the basis of intellectual disability may be cold and calculated, but it is certainly neither reasonable nor objective. It’s based on ignorance and prejudice, as are all the arguments for it.

9. God created Amelia’s condition, and we should just let God’s will be done. If her kidneys fail, that’s what God wants.

A person making such a statement would never suggest withholding medical treatment from a young able-bodied boy stricken with cancer, or a young able-bodied mother who comes down with pneumonia. But apparently, in the minds of those who say such things, God has a different standard for disabled people.

You know that God you don’t believe in? I don’t believe in that God either.

10. I don’t mean to sound harsh, but [insert statements 1-9 here].

The only answer I can give is to say, “Harsh doesn’t cover it. You’re being dehumanizing. Keep your mouth shut.”

These kinds of statements should be a wake up call to anyone who hasn’t yet understood that if Amelia Rivera can be denied life-saving treatment, it could happen to any one of us. If you feel moved to wade into the muck and respond to the comments on any of the major news sites, on this issue or others like it, please feel free to pick and choose from my responses. There is no use reinventing the wheel when we have social justice work to do. But mostly, I hope that you will keep your mind and your heart on the thousands upon thousands of people who recognize the worth and the dignity of every life. We are a force to be reckoned with.

© 2012 by Rachel Cohen-Rottenberg

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A Stunning Injustice: The Case of Amelia Rivera

January 15, 2012 Rachel Ableism

Of all the forms of inequality, injustice in healthcare is the most shocking and inhumane. — Martin Luther King, Jr., March 25, 1966

By now, many of you are familiar with the story of Amelia Rivera, a three-year-old child with Wolf-Hirschhorn Syndrome who has been denied a life-saving kidney transplant at the Children’s Hospital of Philadelphia on the basis of her intellectual disability.

Amelia’s mother Chrissy has described the circumstances of the denial in her post Brick Walls. At a meeting with Amelia’s doctor, Chrissy and her husband were given two pieces of paper on which the words “Mental Retardation” and “Brain Damage” were highlighted in pink. Here is part of the interchange that ensued between Amelia’s mother and the doctor:

I point to the paper and he lets me rant a minute. I can’t stop pointing to the paper. “This phrase. This word. This is why she can’t have the transplant done.”

“Yes.”

I begin to shake. My whole body trembles and he begins to tell me how she will never be able to get on the waiting list because she is mentally retarded.

A bit of hope. I sit up and get excited.

“Oh, that’s ok! We plan on donating. If we aren’t a match, we come from a large family and someone will donate. We don’t want to be on the list. We will find our own donor.”

“Noooo. She—is—not—eligible –because—of—her—quality– of –life—Because—of—her—mental—delays” He says each word very slowly as if I am hard of hearing.

“STOP IT NOW!” The anger is taking over. Thank God. Why did it take so long to get here?

When I first read these words, I felt so outraged by the injustice, so heartbroken for Amelia and her family, and so disgusted by the doctor, that I was at a loss for how to respond.

Not anymore. This case is not just about one precious child. It’s about the ways in which the devaluing of disabled lives has found its way into a discussion of whether to let this precious child live.

The sheer weight of ignorance about the lives of disabled people couldn’t be any more clear than in the doctor’s presumptions about Amelia’s quality of life. As the late Harriet McBryde Johnson wrote in her brilliant article Unspeakable Conversations, the judgments of medical professionals about the quality of life of disabled people tend to be greatly at odds with the judgments of disabled people themselves: “The social-science literature suggests that the public in general, and physicians in particular, tend to underestimate the quality of life of disabled people, compared with our own assessments of our lives.” This disparity begs the obvious question: On what basis can a doctor — or anyone else, for that matter — possibly assess the future quality of another person’s life? Unfortunately, there is an answer to this question, and it’s not pretty: The basis for such a judgment is that the person will not live the life of a so-called “normal” person, and that therefore, the person’s life is diminished in worth.

The Nazis had a term for such a life: Lebensunwertes Leben. Life unworthy of life.

And because Amelia has been deemed unworthy of life, she has been given a death sentence by her doctor. As though that weren’t enough of an outrage, enter the social worker, who said to Amelia’s mother:

Well, you know a transplant is not forever. She will need another one in twelve years. And then what? And do you have any idea of the medications she will need to take to keep her healthy?”

…

[W]hat happens when she is thirty and neither of you are around to take care of her. What happens to her then? Who will make sure she takes her medications then?

For anyone who is unsure whether these words mean what you think they mean, let me translate: According to the social worker and her crystal ball, Amelia will not be capable of keeping track of her medications when she is thirty, so she should die in the next six to twelve months.

Never mind that Amelia may be fully capable of keeping track of her medications at thirty. Never mind that if she can’t keep track of her medications when she is thirty, society has an obligation to provide her with assistance to ensure her quality of life. Never mind that every human being is owed pure respect and limitless love. Never mind that we actually live in society with other people who have the choice to either help us or leave us to die. By the social worker’s reasoning, people who cannot remember to take their medications, people who cannot lift their hands to reach their medications, people who cannot put their hands to their mouths to take their medications, people who cannot afford medications in the first place, have lives unworthy of life.

I wish I could believe that the danger facing this one little girl stops with her. I wish I could believe that this case is an aberration. But I know better. Consider the following:

A 2006 article called Dispute Over Mental Competency Blocks Transplant describes the case of Misty Cargill, who was denied a kidney transplant because of her intellectual disability, and contains the following statement:

When Mary Ellen Olbrisch, a clinical psychologist at Virginia Commonwealth University Medical Center in Richmond, surveyed nearly 100 transplant centers, about 60 percent said they’d have serious reservations about giving a kidney to someone with mild to moderate mental retardation.

A 2010 article called Transplantation and Mental Retardation: What is the Meaning of Discrimination?, contains information on international organ transplant guidelines, some of which note that intellectual disability should contraindicate organ transplant:

A consensus report from the Pulmonary Scientific Council of the International Society for Heart and Lung Transplantation states that the presence of MR represents a contraindication for transplantation. The report states that transplantations should not be provided on the basis of ‘the documented non-adherence or inability to follow through with medical therapy or office follow-up or both, untreatable psychiatric or psychological conditions associated with the inability to cooperate or comply with medical therapy, absence of a consistent or reliable social support system’. (728)

Please note the rather chilling idea that the lack of a “social support system” should amount to a death sentence

Another 2010 article, called What do you expect? She is mentally retarded!, contains an excellent discussion about the depth of the problem, with the testimonies of parents who have seen their children denied organ transplants:

[P]arents have reported that it has not been unusual for their sons or daughters to be disallowed recipient status for organ transplant surgery, with disability given as the reason for exclusion:

“I was told by her cardiologist that she is not eligible for a transplant because of her Down syndrome.”

“We were told that if he was ‘normal’ like us he would be a great candidate for a corneal transplant.”

“The first doctor we saw told us that no transplant could be done because our son was ‘retarded’”.

“I was told that at the university hospital they will transplant a kidney but not even consider a heart transplant for someone with Down syndrome”.

If anyone believes that the devaluing of the lives of disabled people is simply a question of architectural barriers, job discrimination, and social exclusion, think again. Sometimes, it turns lethal.

But we can act to save the life of Amelia Rivera, and all the other Amelia Riveras out there. Please do the following:

Leave a message on the Facebook page of the Children’s Hospital of Philadelphia:

http://www.facebook.com/ChildrensHospitalofPhiladelphia

Contact the Children’s Hospital of Philadelphia’s Family Relations Office by phone at 267-426-6983 or by e-mail at FamilyRelations@email.chop.edu.

Sign the petition at Change.org:

http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive

Consider contacting the following media outlets so that Amelia’s story reaches a wider audience:

http://www.facebook.com/WBRETV?sk=wall
http://www.facebook.com/PhillyDailyNews
http://www.facebook.com/pages/Philadelphia-News/129580433764477
http://www.facebook.com/phillyinquirer
http://www.facebook.com/6abc.ActionNews

And please, post to the Facebook page set up to support Amelia and her family:

http://www.facebook.com/miastransplant

Together, we can help this child live.

—

Sources

Johnson, Harriet McBryde. 2003. “Unspeakable Conversations.” The New York Times, February 16. Accessed January 15, 2012. http://www.nytimes.com/2003/02/16/magazine/unspeakable-conversations.html?pagewanted=all&src=pm.

Panocchiaa, N., M. Bossolaa, and G. Vivantib. “Transplantation and Mental Retardation: What is the Meaning of Discrimination?” American Journal of Transplantation 10 (2010): 727–730. doi: 10.1111/j.1600-6143.2010.03052.x.

Shapiro, Joseph. 2006. “Dispute over Mental Competency Blocks Transplant.” NPR, December 22. Accessed January 15, 2012. http://www.npr.org/templates/story/story.php?storyId=6665577.

Simpson, J.H. “’What do you expect? She is mentally retarded!’: On Meeting the Health Challenges of Individuals with Intellectual Disability.” The Internet Journal of Health 11, no. 1 (2010). http://www.ispub.com/journal/the-internet-journal-of-health/volume-11-number-1/what-do-you-expect-she-is-mentally-retarded-on-meeting-the-health-challenges-of-individuals-with-intellectual-disability.html.

Wolfhirschhorn.org. “Brick Walls.” http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/. January 10, 2012. Accessed January 15, 2012.

—

© 2012 by Rachel Cohen-Rottenberg

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Can One Assign the Wrong Intentions to Triangles?

January 11, 2012 Rachel Ableism, Critiques of Autism Theories, Empathy, Theory of Mind (ToM)

I’ve recently run across two studies in which an ability to impute mental states and empathize with others was measured by having the research participants look at inanimate objects moving across a computer screen. Needless to say, I find this particular method rather questionable.

Here’s the rundown: A 2000 study by Abell, Happe, and Frith attempted to measure theory of mind by asking the participants to describe two moving triangles in computer animations. The researchers showed the animations to a group of adults, a group of eight-year-old autistic children, and a group of eight-year-old typically developing children. The animations were constructed by the authors to show random behavior, goal-directed behavior, and deceptive behavior. Most of the adults used intentional and emotional terms to describe the actions of the animations. The autistic children ascribed mental and intentional states to the triangles less often than the non-autistic children, and when they did ascribe mental states, the researchers described their answers as “inappropriate.”

A related 2006 study by Knickmeyer et al. attempted to measure whether fetal testosterone is inversely associated with empathy. To do so, the researchers analyzed the levels of fetal testosterone in the amniotic fluid of 38 typically developing children who had reached the age of four and, as in the 2000 study, showed the children cartoons with two moving triangles. The result was that more girls than boys used terms reflective of relationships, emotion, intention, and mental states to describe the triangles, and that levels of fetal testosterone were directly correlated with a lack of intentional thinking and the use of emotion-neutral propositions. The researchers reached the conclusion that the result shows a correlation between fetal testosterone and social development. Because a previous study had shown that autistic children score more poorly than typically developing children on the same task, the researchers also concluded that their findings support the extreme-male-brain theory of autism — that is, the theory that autistic people have male-gendered brains.

Before I continue, let me summarize the logic of both studies:

a) Autistic children do not impute mental states to inanimate objects as often as non-autistic children and adults,

and

b) Typically developing children who had higher levels of testosterone in their amniotic fluid do not impute mental states to inanimate objects as often as children with lower levels,

therefore,

c) Autistic people have extreme male brains.

You’ll note a few missing pieces in the logic here. This phenomenon arises from the fact that the researchers failed to pose a number of critical questions:

1) How does a failure to anthropomorphize inanimate objects indicate a problem with mentalizing, empathy, or pro-social behavior? An alternative explanation would be a bias in the autistic children toward seeing the world as it really is.

2) Given that triangles are inanimate objects and don’t have mental states, how could anyone possibly measure, scientifically or otherwise, whether the mental state one ascribes to a triangle is correct? Showing the participants a computer animation and telling they’ve gotten the answer wrong is like giving respondents a Rorschach test and telling them they’ve failed.

3) What, exactly, in a scientific paper, is the objective, quantitative definition of “inappropriate”? To my ears, the word translates as “You haven’t given the answers we had in mind when we set up the test.”

4) How exactly does a higher level of fetal testosterone make the culturally defined construct of “male” as “high systemizer/low empathizer” biologically determined in autistic brains?

Of course, the chief flaw in the study is the subjective nature of the ways in which the researchers view the cartoons. For instance, in the 2006 study, the researchers see the motions of two of the triangles as a mother coaxing her child to go outside, and they expect that their view will be shared by all of the participants. When the participants don’t see the shapes in the same way, the authors conclude that the participants are lacking in empathy and pro-social behavior. I can’t see any evidence that a failure to anthropomorphize inanimate objects indicates a problem with empathy or social relationships. An alternative explanation would be a bias toward simply calling a triangle a triangle, which is in no way opposed to empathic response.

Now, I know what you’re thinking, because the same thought occurred to me: “Autistic people tend to take things literally. Of course they just see triangles. Why does that have anything to do with empathy?” But you see, in the logic of autism research, the fact that autistic people take things literally is itself evidence of impaired empathy and theory of mind. Here’s the (very circular) logic:

a) Autistic people take things literally because they have impaired theory of mind

and

b) Autistic people don’t ascribe mental states to inanimate objects, but see them literally,

therefore

c) Autistic people have impaired theory of mind.

Sometimes, it just amazes me that scientific studies purporting to result in objective and quantitative measures are informed by so much subjective bias. But of course, given that such studies are constructed from inside the consciousness of one set of human beings in order to describe the consciousness of another set of human beings, they are, by definition, permeated by subjectivity. It’s not the subjectivity I mind; if the subjectivity of the researchers were fully factored into the research, as is the case in qualitative research, then the issues would be clear for all to see, and the questionable nature of the conclusions would be more readily apparent. It’s the pretense of objectivity that I find most objectionable, and that I consider one of the most serious issues in the research.

Sources

Abell, Frances, Frances Happe, and Uta Frith. “Do triangles play tricks? Attributions of mental states to animated shapes in normal and abnormal development.” Cognitive Development 15, no. 1 (January-March 2000): 1-16. doi: 10.1016/S0885-2014(00)00014-9.

Knickmeyer, Rebecca, Simon Baron-Cohen, Peter Raggatt, Kevin Taylor, and Gerald Hackett. “Fetal testosterone and empathy.” Hormones and Behavior 49, no. 3 (2006): 282-292. doi: 10.1016/j.yhbeh.2005.08.010.

© 2012 by Rachel Cohen-Rottenberg

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Saving a Theory, Dismissing its Subjects

January 1, 2012 Rachel Ableism, Critiques of Autism Theories, Empathy, Marginalization, Mind-Blindness, Theory of Mind (ToM)

I’ve been spending the weekend putting together my preliminary research questions and a working bibliography for my graduate program. To my great surprise, I’ve actually been able to read some of the blazingly unempathetic papers about our supposed lack of empathy without spluttering in a fit of moral outrage every five minutes. I call that progress. In fact, I read several articles and found myself able to critique the problems in them rather effortlessly. I credit this development to two things: a) the critical theory I’ve been reading, which helps me to see the larger issues of power and privilege that weave themselves throughout the literature and b) my support network of over 40 people I can call on when the going gets tough.

And then, I read a 2004 article by Uta Frith, and I moved away from my stance of critical detachment toward one of absolute moral outrage.

There I was, enjoying a quiet day at home, reading by the woodstove, minding my own business, and wanting nothing more than to have an enjoyably uneventful time, when I stumbled upon the following piece of remarkably nuanced thinking and stellar prose in Frith’s Emanuel Miller lecture: Confusions and controversies about Asperger syndrome:

“One way to describe the social impairment in Asperger syndrome is as an extreme form of egocentrism with the resulting lack of consideration for others.” (Frith 676)

Don’t you just love when these kinds of prejudicial statements rise up and punch you in the gut? I know I do. It’s just so much fun to read about myself in these terms. You have no idea. And what makes it all the more fun is that the irony of the statement is entirely lost on the writer. She engages in a prejudicial generalization about an entire group of people (otherwise known as a stereotype) and, in the same breath, tells us that we’re the ones with a “lack of consideration for others.”

And here I thought it was autistic people who couldn’t understand irony.

Now, you might not think it could get worse, but that’s because you haven’t read a lot of papers on autism and theory of mind. As it turns out, not only are we egocentric, but we’re unlike those “normal selfish” people who can use egocentrism to their advantage. At least, with them, someone gets something out of it, right? But with us — well, we just can’t help ourselves:

“The self-absorption and disregard of others is not like the strategy that a normal selfish person might deliberately adopt and flexibly use according to what is currently in his or her best interest. Autistic egocentrism, by contrast, appears to be non-deliberate and not determined by what might currently be in the best interest of the individual.” (Frith 676)

In other words, nature has made us selfish. We were just born that way. It’s taken us over and it’s out of our control.

And guess what happens once you peg a whole group of people as being egocentric and selfish? Everything becomes our fault. All the problems in our personal relationships? All our fault! All the problems in our social world? All our fault! You don’t believe me? Read on, my brothers and sisters:

“This egocentrism seems to present a huge difficulty in forming successful long-term interpersonal relationships. Spouses and family members can experience bitter frustration and distress. They are baffled by the fact that there is no mutual sharing of feelings, even when the Asperger individual in question is highly articulate.” (Frith 676)

Yes, you heard it here. We cause people “bitter frustration and distress.” Of course, they do not cause us “bitter frustration and distress.” No. Never. Just doesn’t happen. If we feel “bitter frustration and distress,” it’s all our damned fault for being so, you know, abnormal. If we were only normal, we wouldn’t feel frustrated and distressed. Problem solved!

And, of course, it’s absolutely UNHEARD OF to find a neurotypical person who has difficulty expressing his or her feelings. It just doesn’t happen. Those men I dated and broke up with because I couldn’t get them to articulate a feeling to save their lives? I must have misunderstood where they were coming from. When they were telling me I was hormonal — or refusing to speak altogether — I guess their body language was actually saying, “Yes, honey, I understand and am awash in feeling.”

But of course, I wouldn’t know anything about that, because apparently, I’m just not able to imagine what other people might be thinking. Or so says the author:

“One obstacle seems to be an inability on the part of the person with Asperger
syndrome to put themselves into another person’s shoes and to imagine what their own actions look like and feel like from another person’s point of view.
Another way to describe the social impairment is as a failure of empathy, involving a poor ability to be in tune with the feelings of other people.” (Frith 676)

I’ve just spent the weekend going through dozens and dozens of articles, and these kinds of statements keep coming up, over and over and over. I can only conclude that the researchers are perseverating on a theme. And I don’t mean for a day, or a week, or a month, but for years and years and years. It’s incredible. You’d think they’d be more flexible and want some change — a broadening of perspective, so to speak — instead of this incessant sameness.

But you know what happens when you try to separate a person from his or her perseverations? It’s not a happy moment. Witness then, the way that the author responds to the fact that autistic people have been writing self-reflective narratives for some time. In a section whose title, “Listening to people with Asperger syndrome,” should really have been “Dismissing people with Asperger syndrome” (or did I miss the intentional irony?), the author makes the following assertions regarding people with Asperger’s who see themselves as having a different experience of the world and a unique perspective on life, rather than being a collection of deficits:

“Researchers and clinicians can agree with this to some extent. However, they may point out that a peculiar lack of insight and an egocentric viewpoint are typical of the syndrome, throwing doubt on at least some of the self-assessments of needs and expectations.” (Frith 681)

In other words, the “experts” have determined that we lack insight and suffer from egocentricism, so whatever we say about our own desires, our own needs, our own experiences, and our own expectations of other people is suspect. Got that? If that’s not a perfect formula for disempowering hundreds of thousands of autistic people, I don’t know what is. And it very neatly closes off the potential for measuring the external validity of the research findings, too.

But, of course, those of us who reflect upon ourselves and others in insightful ways probably don’t have Asperger’s anyway:

“One problem with the autobiographical literature is that the authenticity of the diagnosis is not guaranteed” (Frith 681-682).

Will people ever get tired of the perseverative need to keep saying this? Would it be possible for them to just walk in our shoes and say, “Oh, I see. Now I understand. Thank you for providing a reality check on my lab tests”? Would that really be so terribly difficult?

But the zeal to save a theory from the clutches of reality does not simply extend to talking about our inherent egocentricism and casting doubt on our diagnoses. Oh no. It moves into misinterpretations so extreme that they beggar belief. Take, for example, the following:

“The autobiographies of individuals with Asperger syndrome indicate a high degree of retrospective self-analysis that came with adulthood. This can be seen, for
instance, in Gunilla Gerland’s autobiography (1997) and in Clare Sainsbury’s collection of over twenty individuals’ reminiscences of their school years (2000). These works suggest that self-knowledge and sharing of knowledge with others was poor in childhood.” (Frith 683)

So, let’s get this straight: Because we now look back on our childhoods and understand things that weren’t clear before, that in itself is evidence that we lacked self-knowledge and understanding of others as children. Of course, the questions that jump immediately to mind are the following: What self-reflective adult doesn’t look back on childhood and understand things that were opaque before? And what small child understands things the same way as an adult? When non-autistic people look back, reinterpret, and reweave the stories of their lives in narrative form, we laud them for being mature, creative, and insightful. But when autistic people look back, reinterpret, and reweave the stories of our lives in narrative form, we’re told it’s evidence that we lacked theory of mind in childhood.

Not too much confirmation bias there.

But the theory must be saved. Oh, yes. And its subjects must be dismissed.

Source

Frith, Uta. “Emanuel Miller lecture: Confusions and controversies about Asperger syndrome.” Journal of Child Psychology and Psychiatry 45, no. 4 (May 2004): 672-686. doi: 10.1111/j.1469-7610.2004.00262.x.

© 2012 by Rachel Cohen-Rottenberg

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I’m Not Angry

December 28, 2011 Rachel Ableism, Disabilities, Marginalization, Self-Advocacy, Spiritual Beliefs

In response to people who tell me that I’m too angry at the ways in which autistic and otherwise disabled people are treated, all I can say is: I’m not angry. I’m not having a personal feeling that I need to resolve. No. I’m outraged. I’m having an ethical response to a society that needs to right its wrongs. I’ve been outraged all my life at injustice and needless suffering, and I always will be. I consider it an ethical obligation of the highest order.

© 2011 by Rachel Cohen-Rottenberg

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The Perfect Answer

November 28, 2011 Rachel Ableism, Marriage


Why do you stay in the marriage?

An acquaintance recently asked my husband this question. He asked it not because my husband had expressed any unhappiness with our marriage, but because I have Asperger’s.

How do I begin to explain all the ways in which this question hurts?

Let’s start with the assumption that my husband must be unhappy in our marriage, despite the fact that we are both quite delighted to be married to each other. It’s rather common for disabled people to hear others make that assumption. It’s an assumption based on the notion that disabled people are a trial and a tribulation to those who love us. So I knew, at that moment, that I wasn’t alone. It was somewhat comforting to know I wasn’t alone, but mostly, it was very painful to know that I wasn’t alone, and that so many of us still go through these experiences.

And then, there is a stereotype at work here, an assumption that people with Asperger’s are all alike, and that we make relationships difficult simply by virtue of being autistic. Somehow, when one partner has Asperger’s, generalizations replace specifics, and the idea that relationships are a two-way street, in which each party can be a challenge to the other, gets lost.

While I was still reeling from having heard the question, only one answer came to mind, and it was the answer I was hoping my husband had given:

Because I love her.

It’s not the one he gave. I was disappointed at first. When someone implies something negative about me, I immediately go to the place of wanting my husband to profess his love for me, in a very loud and declamatory voice, from the nearest rooftop.

But now I’m glad he didn’t give that answer. Simply saying that he loves me runs the risk of implying that he stays in the marriage not because of what I bring, but out of something akin to heroism. It ignores the ways in which I ground his life, in which I nourish his heart, in which I support him in all of his struggles. It has the potential to reinforce the notion that, because of my disability, I am a burden that he carries with saintly patience. And it suggests that he should have to profess his love for me, rather it simply being a given, as it should be for any husband and wife.

So he didn’t say he loved me. Instead, this is what he said:

Because it works for me.

It’s a brilliant answer. It really is. It takes the entire conversation out of the realm of disability and into the realm of why anyone stays in a marriage. You stay because it works for you. It may be hard work sometimes, and it may be a rocky road sometimes, but that’s marriage. Certainly, you also stay because you love the other person, but that’s not enough to keep a marriage going. Lots of people who love each other break up because the marriage stops working for one or both of them, and because there is nothing that anyone can do to fix it.

So yes, my husband is married to me because it works for him. And I am married to him because it works for me. Each of us can be a trial to the other at times, but the same is true for any two married people. We are not married despite the challenges each of us puts in the path of the other, but because of them. They help us to grow, to love, and to understand life in ways that we could never begin to do without the other.

© 2011 by Rachel Cohen-Rottenberg

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Navigating Competing Worlds: The Elusive Ideal of Normalcy

October 19, 2011 Rachel Ableism, Belonging, Community, Disabilities, Medications, Spectrum Pride

Over the past few weeks, I’ve been very busy with my job and with getting acclimated to the routine of my graduate program. I’ve formed a great connection with the little guy I care for, and in my graduate program, I’m generating lots of ideas and questions as I go along.

For one of my classes, I recently read an excellent article called Orchestrating Voices: Autism, Identity, and the Power of Discourse by Nancy Bagatell, an assistant professor of Occupational Science at Quinnipiac University. The paper is the result of the author’s nine-month process of interviewing and observing Ben, a 21-year-old college student with autism, as he engages in the iterative task of constructing his identity in the face of social stigma and the demands of normalcy. Because it illuminated some of my own struggles and gave me insight into some of the issues that we face as disabled people, I thought I’d share my observations.

In Bagatell’s study, Ben’s struggle for identity goes through three phases:

1. Pretending to be normal
2. Finding the autistic community
3. Navigating competing worlds

Sound familiar, anyone?

Pretending to be normal
Summary: As a child, Ben knows he is different, has little interest in the things his peers are interested in, and is “teased mercilessly.” He initially resists attempts by his parents and teachers to “fit in” and “act normal.” As Ben gets older and wants friends and a girlfriend, he attempts to act in the ways that his parents and teachers suggest, but he has difficulty navigating social situations. The more “normal” he tries to act, the more he feels that something is “wrong” with him, and the more isolated and depressed he becomes. (416)

When Ben goes to college, his anxiety and depression worsen. He sees a psychiatrist who prescribes medication and sends him to a social skills group and psychotherapy in order to help him “fit in.” He begins self-medicating with marijuana, alcohol, and prescription drugs in order to try to navigate social situations. In this phase of his life, Ben relentlessly attempts to control his behavior by pretending to be normal and longs for a cure for his autism. (417)

Ultimately, he finds that pretending to be normal is enormously stressful. He experiences increased anxiety and panic attacks, and he engages in self-injurious behavior. This phase finds its climax when he climbs to the top of a building, intending to commit suicide. The result is a three-day stay in a psychiatric hospital. (417-418)

My thoughts: One of the things that struck me about Ben’s story is the Catch-22 in which he finds himself: the more he tries to “act normal,” the more “wrong” he feels. That is, attempting to attain an ideal of normalcy only results in a pervasive sense of failure.

As a child, I avoided that sense of being all wrong — partly because I was a good student, and partly because I was an athlete. On both counts, success built upon success, and my self-esteem was pretty solid. The trouble started in adolescence, when social situations became more complex, and it was clear that I was not engaging them as other people were. Each year of high school, I chose a different friend to emulate, just so that I could feel that I was getting it “right.” But, like Ben, the whole time, I felt a deep and pervasive sense that something was wrong with me, and that sense only deepened as I got older.

I am very fortunate in that I didn’t end up suicidal. Oddly enough, the abuse I had experienced at home created in me a powerful desire to live. I was determined that I was not going to let the abuse destroy me.

But suicidal ideation is not uncommon for autistic people, and the beginning of Ben’s story is something of a parable about the very significant dangers of the medical model of disability. In emphasizing impairment, it rejects that idea that a disabled person is whole, and thus supports the notion that one must be typically able-bodied in order to be a complete human being with a full and meaningful life. The medical model is a self-perpetuating one: if it is taken as axiomatic that one must be “normal” to have a good life, then most of society’s resources and energy go to attempting to get disabled people cured, assimilated, or out of sight. Very few resources and very little energy go into making the society more respectful and inclusive of diversity, when doing so is the only way to actually enable disabled people to have full and meaningful lives. Ben’s attempted suicide speaks to his instinctive perception that the medical model holds no promise for him. It simply leaves him feeling that he is wrong and cannot be made right, no matter how hard he tries. Under these conditions, he feels that his life is not worth living.

Bagatell notes that Ben’s attempt to construct an identity have led him to consider suicide because he knows that he cannot be “normal” in a society that privileges the normative, and so ends up in a state of self-hatred: “Within the discourse of ‘normalcy’ Ben was a failure… Like many others with disabilities, Ben became ‘tangled up in various forms of self oppression’ (Swain and Cameron, 1999, p. 75). Ben’s attempts at self-punishment climaxed on that April day as he literally teetered on the edge.” (418)

Finding the autistic community
Summary: After he leaves the hospital, Ben attends an autism conference and learns that his behaviors and perceptions are neurologically based, rather than a question of moral will or deviance. He begins to see them as “a normal part of my experience.” Ben meets other people with Asperger’s who have stopped pretending to be normal. He rejects the need for a cure, seeing Asperger’s as integral to who he is as a person, not something that can be “separated out.” He begins to accept and assert himself as he is and to reject attempts to render him “normal.” In so doing, he makes a very good distinction between acting normal and being normal:

“There really is basically no way to teach yourself to be more normal. You can teach yourself to appear normal but you can never really be more normal. And trying to do it is just stressful. I think that’s everybody’s experience.” (419)

Ben sees himself as part of the autistic community, where he can be who he is without attempting to conform to conventional social expectations. He enters and becomes engaged in the shared experience of a world in which he is not marginalized. He listens to the voices of other autistic people who reject the need for conformity in a quest to live an authentic life. He chooses to “come out” as a person with autism and to adopt it as a “valid, positive social identity.” (419-422)

My thoughts: Ben’s experience almost precisely mirrors how I felt when I found the online autistic community. Suddenly, there were other people like me. And for the first time, I felt “normal” in a group of people. It was very empowering and very comforting.

The problem, as I soon found, was how to navigate between the larger world and the autistic community. As grateful as I am to have found this community, and as empowered as I feel by all that I’ve learned, the dissonance between my own emerging truths and the social attitudes toward disability that I’ve encountered in others have been very painful to me. It was one thing to attempt to navigate the world with an interesting neurology I didn’t have a name for; it’s quite another to have become conscious of the issues in play and find that the world is still seriously behind the game in understanding them. This is part of the quandary in which Ben ultimately finds himself.

Navigating competing worlds
Summary: After a time, Ben experiences the tension between the “authoritative voices” of the neurotypical world (in which he is perpetually reminded of the importance of fitting in and, thus, of his perpetual position on the margins) and the alternative voices of the autistic community, which welcome him and let him know that he is fine as he is. He realizes that he cannot just choose between these voices in constructing his identity, but needs to figure out how to perceive himself in both worlds.

Bagatell suggests that we form multiple identities in which to navigate multiple social and cultural worlds, and that the trick for Ben is to figure out how to have a positive identity in each one. (422-423)

For Ben, by the end of the study, the process is not going well. He experiences more agitation, anxiety, depression, and sensory overload. He tends to see both the autistic and neurotypical worlds in negative terms. He does not see autism as a positive, nor does he see many possibilities for love and marriage, even within the autistic community. On the other hand, he is more and more upset that the medical community doesn’t seem to understand autism and that his psychiatrist is constantly “experimenting” with his medications. (423) Ultimately, he seems to see that his problem is social, not medical, asserting that he doesn’t need social skills classes, but true inclusion in society: “’I am sick of social skills groups … . Why can’t someone go to the bar with me or to chess club? That’s what I need.’” (425)

My thoughts: The reality of constructing multiple identities really rings true for me. Earlier in my life, I experienced this process in forming a Jewish identity within the Jewish community, and then attempting to figure out how to navigate the larger society without losing my sense of my own culture. Within Jewish culture, I could use certain words and have my meaning be understood, because we all shared the same basic paradigm; in the larger culture, those same words could be taken to mean something quite different, and I had to choose carefully how to present myself and my ideas. (For example, the word “salvation” means something quite different in Judaism than it does in Christianity. In Judaism, it refers to being saved from suffering and injustice in this life, while in Christianity, it has to do with being saved from hell after death.)

Forming multiple identities is the challenge for people of all minorities who must live within the larger culture. How does one live within different worlds — especially when one world takes a pejorative view of the other? It’s a very complex process. For disabled people, it’s particularly fraught, because the larger society defines us in terms of what we lack, and we tend to form identity in the face of it. Along these lines, Bagatell quotes Swain and Cameron (1999):

“From the viewpoint of disabled people, then, their personal and social identities have traditionally been formed within a framework from which they have been excluded. In defining the parameters that state emphatically what disabled people are not (i.e. ‘normal’), the dominant cultural discourses determine that disabled people’s self-reference is measured against this. (p. 75, emphasis in original)” (418)

The question is, how do we disabled people define ourselves in a context that embraces the deficit model and sees us mainly for who we are not? It seems to me that we always have a choice to make: Do we take in those voices of impairment, lack, deficit, and disease, and see ourselves as people who are “less than”? Or do we define ourselves as whole, as human, as essentially fine, just as we are? And in making this choice, how do we root out the deficit model from our thinking about disability so that we can see ourselves as different, not wrong?

I’d love to hear your thoughts.

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Sources

Bagatell, Nancy. “Orchestrating Voices: Autism, Identity, and the Power of Discourse.” Disability and Society 22, no. 4 (June 2007): 413-426. doi: 10.1080/09687590701337967.

© 2011 by Rachel Cohen-Rottenberg

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