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Reclaiming Memory: Searching for Great-Aunt Sarah
Oct 30th, 2012 by Rachel Cohen-Rottenberg

Following is a post I wrote in January of 2011 on my Journeys with Autism blog. I have been thinking a great deal lately about Sarah. I want to honor her by telling her story here.

In 2009, while searching Ancestry.com for new information to add to my family genealogy, I discovered the existence of a relative about whom no one in the family had ever spoken. She was my paternal grandfather’s younger sister (my father’s aunt), and her name was Sarah. During a search of census records, I learned that she had been a patient at the Massachusetts State Hospital in Canton, MA in 1920, when she was 11 years old, and at the Wrentham State School in 1930, when she was 21. In other words, she appeared to have resided in state institutions from the time she was a child.

My father’s family has a rather unusual last name, so when I came upon Sarah, I felt fairly certain that she was related to us. Because the state schools were often warehouses for people with physical and mental disabilities, I felt from the beginning that Sarah had been “disappeared” from the family because she had been disabled.

In the face of this attempt to erase her from memory, I began a quest to learn everything I could about Sarah and to bring her into the light of day.

I was saddened by everything I found.

Sarah’s father, apparently, was known as “vigorous, gregarious, a hard drinker and a gambler, and inclined to shirk family responsibilities.” Her mother, on the other hand, was described as “mentally incompetent, elusive, and uncooperative.” I’m not sure that Sarah’s mother was actually any of those things, since living with a hard drinker and gambler who chronically refused to take care of his family very likely explained how she presented to the rest of the world.

It’s clear that the family was desperately poor, as evidenced by their contact with various social service agencies throughout the 1920s, and by the placement of two of Sarah’s younger sisters with foster families during the 1930s. There were, in all, seven children who survived early childhood. Four others died very young. Sarah was the second eldest of the surviving children, having been born in 1908.

I soon found out that she was, indeed, physically disabled, and had been diagnosed with “congenital spastic paralysis,” now known as cerebral palsy, when she was very young. But even more interesting are the possible markers of autism: she was a nervous baby, cried continually, tore at her hair, scratched her face unmercifully, and first talked at 4 years of age.

In 1915, at the age of 7, Sarah was placed in a family home with another disabled child. In September of that year, she began in the first grade at the local public school.

In 1916, she was placed in a state home—the Massachusetts Hospital School in Canton, MA—because her foster mother could no longer afford to take care of her. A teacher at this school considered her to be “of slow mind, lacking in concentration, and having problems with attention.” (ADD, anyone?) In a painful example how easily disabled people are dismissed, it was suggested that Sarah be placed in a school for the feebleminded when she was older.

By 1920, the people at the Massachusetts Hospital School said that they could do no more for her. She was judged “not mentally competent” to compete with the children in her grade. It appears that she was placed in another family home before a space opened up for her at the Wrentham State School.

She entered the Wrentham State School in 1921, at the age of 12, with the hideous diagnosis of “moron.” As I look at a photograph of her taken around that time, I find myself amazed that anyone could have missed the focused, sad intelligence in her eyes. In fact, when I first saw the photograph, I burst into tears. She was the only person in the family whose eyes, whose facial expression, and whose look of anger and sadness at the insanities of the world reminded me so thoroughly of my own.

About 10,000 people were institutionalized at Wrentham during its history. Despite Sarah’s diagnosis, she was described as adapting herself very quickly to her surroundings, expressing herself relatively well, and displaying a full range of emotions. Apparently, she always tried to do her best and took pride in neat work—words that would have perfectly described me as a child. She was also a good singer—another trait that we share in common.

Unfortunately, Sarah began to fall apart in the late 1920s. She began to behave and talk in “peculiar” ways, becoming depressed and unhappy. She felt teased by her peers. She lost her appetite for food, and her behavior became disruptive. One can only guess at what she was going through. Had she been assaulted? Had she collapsed under the weight of chronic institutionalization? Had her longing for friends, family, and home finally become more than she could bear? We will never know.

She showed no evidence of being delusional and yet, when she left Wrentham in 1930 and entered the Foxborough State Hospital, she was given a diagnosis of “dementia praecox,” the now-defunct term for schizophrenia. It was certainly not unusual for autistic people, especially women, to be misdiagnosed with schizophrenia and other mental disorders, especially when the process of institutionalization itself created mental and sensory breakdowns. As a state mental institution, Foxborough was a dumping ground not just for physically and mentally disabled people, but also for poor non-disabled children and recalcitrant wives. In those days, it was not unusual for poor children to be placed in institutions, and for rich people to take them out and hire them as maids.

Sarah, however, never had this dubious opportunity. Instead, she entered the Foxborough State Hospital at the age of 21 and never came out. She died of tuberculosis of the lungs in 1934, when she was 25 years old. When I received a copy of her death certificate, I was horrified to learn that she had been ill with tuberculosis for ten months before she died. Ten months, suffering in hell with a wasting disease. It makes me physically sick to think about it.

Under most circumstances, the indignities visited upon the patients at Foxborough followed them into death. In general, the inmates (for that is what they were) were buried on hospital grounds, their graves marked not with their names, but with their patient numbers. As a result, if anyone in a later generation were to visit his or her deceased relative, it would be impossible to know where to look.

I was determined to honor Sarah by visiting her grave, and when I wrote to the state mental health agency to find out her patient number, I was surprised to learn that she had not been buried at Foxborough at all, but in the Arbeiter Ring (Workman’s Circle) cemetery in Boston. I have no idea who got her out of Foxborough to bury her properly, but I hope that the person is reaping untold benefits in heaven for this act of humanity. There is a non-profit agency that oversees all the old Jewish cemeteries in Boston, so I wrote to them right away to see whether they would send me a photograph of Sarah’s grave. To my dismay, I learned that there was no grave marker at all.

So Bob and I decided to get Sarah a proper grave marker, which was placed this past fall. On the marker appear her name, her date of birth, her date of death, and my favorite line from Psalms: Those who sow in tears shall reap in joy.

I hope that she has found joy in the next world.

I hope that she feels the peace of knowing that she has the dignity of a marked grave.

I hope she knows that her picture has taken its place on our wall, along with those of our other ancestors.

I hope it heals her that I am telling her story and making sure that people remember the shame and injustice of what happened to her.

My Hebrew name is now “Rachel Batya bat Sarah Channa”—Rachel Batya, daughter of Sarah Hannah. I have taken Sarah as my spiritual mother. Every Friday night at our Shabbos table, I receive a blessing, and her name is blessed with mine. She never had a chance to have a child of her own, but in some way that I don’t entirely understand, I am her daughter. I am a disabled woman, born into the same family two generations later, and I have what she didn’t have. I have the power to stand up and say, “No more.”

No more dismissal. No more shame. No more isolation. No more disappearances. No more silence.

No more Aunt Sarahs.

Not now. Not ever.

© 2011, 2012 by Rachel Cohen-Rottenberg

Autism and Systemizing: Why Structure Rocks (And It’s Not What You Think)
Oct 29th, 2012 by Rachel Cohen-Rottenberg

Most readers are probably familiar with the stereotype of the highly rational autistic geek with a mind designed for science and numbers — an idea made popular by Simon Baron-Cohen, who considers us “systemizers” with a particular talent for technology, science, mathematics, and related fields (Baron-Cohen 2011, 96, 106-107, 122). The stereotype appears in all manner of media — mainstream news stories, popular books, online articles, and Facebook threads. Based on this stereotype, you get the fascinating phenomenon of retroactive diagnosis, in which everyone from Isaac Newton to Albert Einstein was autistic. I understand the need to develop cultural role models as a source of pride, but there are lots of living, breathing autistic people excelling at the business of being human. Surely, we could concentrate on what they bring?

I tend to chafe against the stereotype of the autistic science geek, for a number of reasons. For one, I have absolutely no interest in science and mathematics. None. I respect science. I respect people who engage in scientific research with conscientiousness and rigor. But the closest I come to having anything to do with math and science these days is to balance my check register every week — longhand, using a calculator to check my math. I can’t say it’s something I love. I like knowing that the books balance and that our money is accounted for, and I’ll admit to a moment of satisfaction when everything comes out just right, but I can’t say that I look forward to the process with great eagerness. It’s just a necessity, like washing my clothes or mopping my floor. It’s something that must be done, and I try to get as much enjoyment out of the doing as I can, but that’s quite different from being naturally wired for it.

I will acknowledge, however, that I do a lot of systemizing. I make lists of tasks. I create rules to keep my blog a safe space. I’m a very organized writer; if I don’t outline my writing beforehand in Word, I write out ideas in my head and switch them around in my mind’s eye, as though they’re part of a visual composition that I have to get just right. I organize my email in folders. I organize my family genealogy in a database. I organize my graduate school research into a dialectic journal. I organize my weekly cleaning tasks into daily reminders on my Blackberry. I organize files and memorabilia into boxes in the attic. (And yes, they’re all labeled.) I made a living for 15 years as a technical writer organizing technical information, and I won an award for a 200-page manual that was basically an annotated list of industry acronyms. So yeah, you look at my life from the outside, and it just looks like my brain is wired to systemize the hell out of everything.

But here’s the thing: The problem is that people spend an awful lot of time talking about the fact that autistic people systemize, but they don’t ask much about why we systemize. Personally, I don’t make lists and rules and keep things in order because I have a natural love of lists and rules and order, or because my mind naturally gravitates to them, or because I’m wired to be a systemizer. I’d really rather not have to be making lists and organizing the hell out of things; I’d rather sail through life as messily and as clumsily as most other people. But I systemize because my experience of the world is intense almost beyond description, because I have to work very hard on things like hearing and speaking that most people don’t, and because most of the information that comes through my senses is not filtered in the way that most people take for granted. So yes, I do a lot of things to organize my life and my thoughts, but it’s an adaptation and a way to gain control over a very intensely felt experience.

It was a huge relief when I got diagnosed and realized I wasn’t a just a control freak. It was a wonderful day when I realized that I’m a person with a disability who has adapted to it by using my mind to structure my experience. And yes, I do have a very analytical mind. I can analyze the hell out of almost anything. But my analytical skills are in direct proportion to how painfully sensitive I am about a great many things that aren’t even a blip on the radar of most people.

Of course, the other problem with the whole idea of autistic people being systemizers is that systemizing is placed in opposition to empathizing (Baron-Cohen 2011, 117) — as though one can have a high level of one or the other, but not both. That’s absolute nonsense. My systemizing is directly proportional to my empathizing, which is directly proportional to my intensely sensitive experience of life. They’re all of a piece. They’re not in opposition. Not in any way, shape, or form. If I didn’t feel the experiences and the suffering and the joy of other people so intensely, I wouldn’t concern myself so passionately with creating structure.

Structure is good. Structure rocks. Structure is one of my favorite words. But it’s not because I have a mind that naturally gravitates to structure. It’s because I have a mind that needs structure to contain and make sense of the intensity of experience that is part of autism.

References

Baron-Cohen, Simon. The Science of Evil: On Empathy and the Origins of Cruelty. New York, NY: Basic Books, 2011.

© 2012 by Rachel Cohen-Rottenberg

More On Making A Mockery Of Disability
Oct 27th, 2012 by Rachel Cohen-Rottenberg

I was planning to move on from the issue of Tony Attwood’s mockery of disabled people, but in the comments section of my last post on this issue, Karla provided more details about other parts of his presentation. One in particular grabbed my attention, because I think it’s such an excellent example of everything that is wrong with mocking disabled people. Karla writes about Attwood’s words:

He made 1 joke about Britts and 2 about NTs. Other than that it was all out laughing at autistic people….

At one point Tony talks about a married ASD couple. He talks about how they are in their house at night quietly reading and the neighbor stops by to bring them some nice snack and introduce himself (<—- here the NT neighbor is set up as the “good” guy offering gifts and introduction). Then Tony gets into his “acting mode” and gets wild eyed and starts to freak out as he explains… The ASD couple are quickly running through the house turning off the lights and ducking behind the chairs. Tony ducks behind the podium to act out the bit. (<—— sets ASD couple up as the assholes at worst, a stereotype at best) At this moment the entire room is laughing validating that this behavior is NOT okay by any sort of social standard.

Let me be clear: Attwood does good work on other fronts, but this kind of performance, coming from a person in the center of the culture about people at the margins of the culture, is offensive.

Let’s look at what’s being mocked here: a need for quiet and rest. For an autistic person to be quiet at night, after a long day of social pressure, sensory stimulation, and overcompensation, is an adaptation to a disability and a form of self-care. A lack of this kind of self-care results in stress, physical pain, exhaustion, burnout, meltdowns, and depression. I can attest from long experience that it is an absolute necessity to have time alone and in quiet to recharge. It is exactly the same as a diabetic needing to test his or her blood sugar regularly, or a person with cerebral palsy using a wheelchair in order to conserve energy.

How is the exercise of self-care in the face of disability something to laugh at? Should able-bodied people make fun of diabetics testing their blood sugar? Of people with CP using a wheelchair? Of people emptying their catheter bags? How is any of that open to mockery by those who are not disabled?

Let me put it to you very simply: My senses and my neurological system work hard, every day, doing things that “normal” people take for granted. Going into a crowded store is work. Walking in a noisy downtown area is work. Hearing is work. Speaking is work. I barely even notice how much work it is, because it is my normal. I have always worked this hard at it. It’s my reality. It’s not a question of willpower, of mind over matter, of somehow taking a deep breath and making it less work. It’s the nature of my disability. So wanting to be left alone after a long day of more sensory and neurological work than any able-bodied person can possible imagine is not a sign of willful selfishness or an act of social deviance for an able-bodied professional to mock at an autism conference. It’s a sign of understanding how to take care of my mind and body. And that’s all it is.

My husband understands these things. When he wants to chat and I say, “I’d rather not talk right now, because I’m spent,” he doesn’t laugh at me. If the issue can wait, he says, “No problem.” If it’s an emergency, of course, all bets are off. Most people will push past their limits in an emergency as much as they can. But wanting to chat about the presidential debates, like a new neighbor wanting to chat over a snack, is not an emergency.

How people can defend or rationalize mocking such things is beyond me. I’ve understood how wrong it is for as long as I can remember. But then again, I’ve been a minority person all my life. I’m not sure that a lot of people in the majority, who take respect for granted and haven’t had to face this kind of treatment, can understand it as easily.

But that’s no excuse for not listening when we speak our minds on it. It’s no excuse at all. When minority people say, “Stop mocking us,” you just stop, even if you don’t completely get it, even if you need to think on it, even if it’s inconvenient. You stop because you’re potentially hurting people, and the people you’re talking about know a great deal more than you do about what your words mean to their lives.

© 2012 by Rachel Cohen-Rottenberg

This Blog is a Disability-Safe Space
Oct 26th, 2012 by Rachel Cohen-Rottenberg

I had hoped that I wouldn’t need to write this post. The fact that I have to write it speaks volumes about the kind of world that disabled and other minority people live in.

Up until now, I’d thought that all I’d need to do to create safe space on this blog is to delete outright expressions of nastiness and personal attacks. But I was wrong. There is a more subtle level of disrespect that goes on around disabled people, and in order to keep this space safe, I need to speak to it.

This blog is for the purpose of discussing media representations of disability. As such, it is a space in which disabled people’s perspectives are welcomed, valued, and protected. I welcome comments from everyone, and I want to engage in conversation with nondisabled people about disability issues. But no matter who you are, if you want to comment here, you will need to show respect for disability perspectives. That is not to say that you have to agree with them. (God knows, I don’t agree with everything that anyone says, disabled or not.) In fact, I welcome challenges to my ideas and I thrive on productive disagreement. But in order to have productive disagreement, there has to be respect.

By way of illustration, the following kinds of approaches are not respectful and will result in your losing the ability to post to this blog:

  • Stating that people who protest gloom-and-pity depictions of disability are just in denial about the difficulties of disability.
  • Dismissing the perspectives of disabled and other minority people as biased and subjective, on the assumption that somewhere in the world, there is someone free of bias and subjectivity.
  • Getting into other people’s heads and telling them why they feel as they do, rather than simply speaking to their perspectives and taking them seriously.
  • Accusing people who critique representations of disability of being divisive to the community.
  • Failing to address the issues raised by the original piece and moving the goal posts by raising issues that have nothing to do with the original piece.
  • Disregarding the boundaries of the blog owner or a fellow commenter.

If you want to engage in this kind of disrespect, all you have to do is open up a connection to the Internet and you will find a world of places to do it. This blog is not such a place. It is a safe space for disabled people, and these are my rules for keeping it a safe space.

Thank you in advance for respecting this policy.

© 2012 by Rachel Cohen-Rottenberg

Staring But Not Seeing: A Review of Seeing a Color-Blind Future: The Paradox of Race by Patricia Williams
Oct 23rd, 2012 by Rachel Cohen-Rottenberg

Following is my second critical annotation of the semester.

In her 1997 book, Seeing a Color-Blind Future: The Paradox of Race, Patricia Williams reflects upon the contradiction between our cultural insistence that color does not matter and the material reality of a world in which the construction of race has everything to do with one’s social, political, and economic experience. As I meditated on Williams’ words about the social construct and experience of race, I found myself noticing parallels to the social construct and experience of disability. While Williams does not include disability as a category of critical analysis, and while it would be appropriative to suggest that the experiences of race and disability are exactly the same, it is fair to say that similar issues come into play: the call to seeing the person, not the physical difference; the ways in which minority status is visible for critique, while the perspective of the majority becomes “natural” and fades into the background; the imperative to “pass”; the invitation to speak to one’s minority experience only for the benefit of those in the majority; the experience of being stared at but not seen clearly; and the necessity of battling against “scientific” representations that have little to do with lived experience. Unfortunately, while Williams protests the ways in which people can use one form of prejudice to argue against another, her analysis is marred by the fact that she uses pejorative disability metaphors in the service of her arguments against the insidious nature of racism.

An African-American professor of law at Columbia University and the author of the column “Diary of a Mad Law Professor” for The Nation, Williams is a prolific writer who has spent over 20 years tackling questions of social justice, race, ethnicity, class, and gender. She begins her book, however, with a personal story. She describes an incident at her son’s nursery school — an incident that derived from his white teachers’ well-intentioned imperative to be “color-blind,” but that ended up erasing the nature of her son’s racial experience. For most of his nursery school year, Williams tells us, his teachers believed that her son was color-blind. When asked what color the grass was, for example, he would respond that he either didn’t know or that it didn’t matter. After taking him to have his eyes examined and finding that he could see color perfectly well, Williams began to investigate why he was refusing to identify it (Williams 1997, 3). She learned that some of the children at his predominantly white school had been fighting about whether black people could be the “good guys” in playtime scenarios, and that the teachers had insisted that “it doesn’t matter…whether you’re black or white or red or green or blue” (Williams 1997, 3). She interpreted her son’s extreme refusal to identify color as an index of his anxiety that the teachers’ words would a) erase his own experience of color and b) deny his truth about the ways in which color matters in his relationships with others (Williams 1997, 4).

To put the imperative toward color-blindness another way: his teachers were telling the class to “see the person, not the color” in the same way that some in the disability community encourage able-bodied people to “see the person, not the disability” (Disability and Representation, 2012). In both cases, the imperative to see past the physical attribute, the insistence that the physical attribute does not matter, and the attempt to reach across difference by disregarding it derive from a desire to bring greater harmony to a world of injustice. The problem in both cases, of course, is that race and disability matter in that they are both social constructs that determine experience. Instead of taking a shortcut around the fact of race, Williams believes, we need to engage the experience of race in our culture in all of its manifestations (Williams 1997, 4-5). I would argue that exactly the same is true for disability. Until disability matters, not just as an indicator of personal experience, but also as a civil rights issue in which unjust social relations result in specific types of personal experience, there can be no significant progress toward the day when disability becomes a signifier of difference rather than a symbol of stigma and oppression.

One of the reasons, perhaps, that people rush to deny race and disability is that whiteness and normalcy are themselves invisible. Williams draws from whiteness theory when she writes that whiteness is an unmarked, de-racialized category; our culture does not tend to see whiteness as a race at all (Williams 2007, 6-7). Phil Smith extrapolates from whiteness theory to posit normal theory; for him, normalcy is analogous to whiteness in that it is simply an uncritiqued given and is considered “natural” (Smith 2004, 13). Perhaps, for those who are white and able-bodied, the desire to erase race and disability derives from a misplaced attempt to level the playing field. Perhaps people who insist that we “see the person, not the difference” are resting their view on the assumption that, because whiteness and normalcy are invisible, then race and disability should be invisible, too. Of course, the solution is not to make race and disability invisible, but to make whiteness and normalcy visible as categories of analysis. Until then, the invisibility of whiteness and normalcy will place people of color and disabled people in a realm apart. Williams writes that the invisibility of whiteness “permits whites to entertain the notion that race lives ‘over there’ on the other side of the tracks, in black bodies and inner-city neighborhoods, in a dark netherworld where whites are not involved” (Williams 1997, 7). As is the case with race, our cultural attitude toward disability is that it happens to someone else — someone who lives in a world apart, segregated from view (Murphy 1990, 110-111).

For both people of color and people with disabilities, this impetus toward invisibility takes the shape of pressure to “pass” so as not to intrude one’s difference upon the majority. Williams recounts the experience of her light-skinned cousin who could pass for white but identified herself in college as a member of the black law students’ association (Williams 1997, 53-54). When one of her professors found out that she had “outed” herself, Williams writes, he “grew agitated, annoyed, even confrontational”:

Why would she do such a thing, he wanted to know; why would she ‘label’ herself when she was so light-skinned and could so easily pass for white? My cousin was struck by how offended he was; he seemed to be implying that she had a obligation or a duty to pass and that her failure to do so was both impolitic and impolite. (Williams 1997, 54)

An analogous imperative to pass is the lot of disabled people who are able to hide their disabilities, as evidenced by Tobin Siebers’ remark that people with disabilities “must try to be as able-bodied as possible all the time” (Siebers 2011, 10). After reading Williams’ story about her cousin’s experience, I asked my circle of disabled friends whether anyone had had a similar experience about passing as nondisabled. A number of people had stories to tell. One autistic woman described her husband’s discomfort at her wearing bright yellow noise-blocking headphones and his worry that she was “disadvantaging” herself by choosing not to pass (Personal communication, 2012). Another autistic woman said that she had been accused of being impolite for not passing; after telling someone that her senses were overwhelmed and that she needed to find a quiet spot to recharge, the other person insisted that she continue passing, and chided her by saying “Lisa, you may have Aspergers, but you are intelligent enough to not act autistic” (Personal communication, 2012).

As a result of the cultural imperative to see race and disability as invisible, both are subject to what Williams calls “the forbidden gaze” (Williams 1997, 9). Children have a natural curiosity about difference (Brown 2010, 183) and, while our culture teaches them not to stare at non-normative people, it does not teach them how to engage difference (Williams 1997, 9). Because an interest in difference is both natural and culturally forbidden, people of color and disabled people find themselves in the paradoxical position of having to expose the nature of their experience for the use of others, right up until the point that their experience challenges the comfort of those doing the asking. People of color, Williams notes, “are ground down by the pendular stresses of having to explain what it feels like to be You … or, alternatively, placed in a kind of conversational quarantine of muteness” (Williams 1997, 9). Disabled people, too, find themselves in a similar quandary: they are either subject to questions from strangers about how they came to be disabled (Garland-Thomson 2000, 334) or they are ignored altogether (Murphy 1990, 118). In both cases, the center of gravity is the majority person. Minority people either perform for the majority person’s benefit, or they need to be quiet.

Interestingly enough, for both people of color and disabled people, the “forbidden gaze” turns into its opposite: intrusive staring. Williams refers to this propensity to stare as “racial voyeurism” (Williams 1997, 17). In one example among many, she describes the way in which tour buses in New York City bring tourists to black churches in order to “see the show” (Williams 1997, 22). Four hundred tourists arrive late, jockey for position for the best camera angles, photograph African Americans in prayer, and then disrupt the service by leaving en masse so as not to miss lunch (Williams 1997, 22-25). Williams considers the photographs a way of perpetuating the voyeuristic experience of watching “exotics”; she describes each picture as a “flat, dry, matted photographic relic to be spread out upon the coffee tables of faraway homes; the open-mouthed exotics, frozen in raucous song….” (Williams 1997, 25). Williams’ reflections on the voyeuristic nature of photography bring to mind Rosemarie Garland-Thomson’s statement that “photography authorizes staring” (Garland-Thomson 2002, 58) at disabled people, including those whom nondisabled people consider “wondrous” (Garland-Thomson 2002, 59-61) or “exotic” (Garland-Thomson 2002, 59). Through the eye of the camera, apparently, one can stare and circumvent the stricture against doing so.

And yet for all of this voyeurism, majority people often cannot clearly see the experience of race and disability at all. Williams recounts the discomfort of a colleague who was the only African-American attorney at a business luncheon where the waitstaff was entirely African-American. When the attorney mentioned to her white colleagues how uncomfortable she felt sitting among white professionals while being waited on by other people of color, her colleagues responded with profuse apologies for their choice of venue, all the while making it clear that they could not see the class barriers and social discomfort that were so painfully apparent to her (Williams 1997, 26-27). Siebers makes a similar observation about the experience of disabled people perceiving an architectural or social barrier that able-bodied people cannot see: “When we come to a barrier, we realize that our perception of the world does not conform to theirs, although they rarely have this realization. This difference in perception is a social barrier equal to or greater than any physical barrier…” (Siebers 2011, 51). In both cases, people in the minority are vividly aware of a core feature of their experience that is utterly invisible to those in the majority.

For both people of color and disabled people, the experience of not being seen properly sometimes takes the form of distorted representations in the guise of science — representations that rest on an ignorance of the daily lives and experiences of the people under study. Williams laments the way in which studies setting out to prove the genetic inferiority of black people periodically surface (Williams 1997, 51). Not only are the studies prejudicial, Williams notes, but they are also difficult to argue against; because they dress themselves up in the language of science and quantitative research, any rebuttal, in order to appear credible, must wear the same garb:

One of the great difficulties of pseudo-science is that it is so hard to refute just by saying it isn’t so… Black people find themselves responding endlessly to such studies before we can be heard on any other subject; we must credentialize ourselves as number-crunching social scientists quickly in order to be seen as even minimally intelligent… And it makes anyone who knows the great messy, unprovable contrary, who knows the indecipherable complexity of black or white people, who knows the reality and the potential of all humanity — us silly egalitarians — it makes us unintelligent, uninformed, powerless, and naïve. (Williams 1997, 49-50)

As Williams asserts, appeals to experience simply do not have a suitable degree of authority to counter anything that poses as science. Her analysis here reminds me of the charge of narcissism leveled at disabled people — the accusation that disability automatically renders one narcissistic — which is supposedly supported by the “science” of psychological research (Siebers 2011, 38-40). The parallel between racist pseudo-science and the pathologization of disability is telling, as is the difficulty of arguing against the “science” by bringing to bear experience that is not quantifiable. How does one use charts and graphs to prove empathy, or interest in others, or socially imposed suffering? How does one use quantitative measures to prove more than a small fraction of intelligence, talent, or insight?

Despite the fact that people of color and people with disabilities experience similar systems of oppressive representation, Williams does not pose disability as a critical category in Seeing a Color-Blind Future. She focuses on the intersections of race, ethnicity, gender, and class, and she notes the ways in which one form of prejudice is sometimes brought to bear in order to fight another; she calls this phenomenon “battling biases” (Williams 1997, 32). As an example of this conflict, she cites her experience of watching a counter person accuse a homeless customer of misogyny as a cover for her own class prejudice against him (Williams 1997, 31-32), and she concludes that this “revolving door of revulsions” is one of the ways in which prejudice remains entrenched (Williams 1997, 32).

Ironically enough, though, Williams engages in “battling biases” herself, using pejorative disability metaphors in order to analyze ways to break through other forms of prejudice. For example, she writes that “the eradication of prejudice, the reconciling of tensions across racial, ethnic, cultural, and religious lines, depends upon eradicating the little blindnesses, not just the big” (Williams 1997, 61), using blindness as a metaphor for a systemic failure to perceive the issues with which minority people struggle. In the same paragraph, she uses paralysis as a pejorative, speaking of the “paralyzing anxiety of well-meaning ‘white guilt’” as a metaphor for recalcitrance and lack of progress on race relations (Williams 1997, 61). In fact, she speaks of her son being pathologized as color-blind for his racial experience (Williams 1997, 5), but she doesn’t seem to realize that disabled people are equally pathologized for our disability experience, and that she is helping to perpetuate that pathologizing impulse.

An understanding of the commonalities between the experience of race and the experience of disability might have helped Williams bring disability into critical focus as a category of oppression and illuminate the ways in which both people of color and disabled people must struggle against similar obstacles. She might have helped make clear that disability, like race, is not simply a question of bodily difference, but an expression of a political and social experience. If Williams had brought disability into her analysis, she might have come to see that disability, like race, is an issue of civil rights and that, rather than deflecting our gaze from it, we must fully engage it.

References

Brown, Lerita M. Coleman. “Stigma: An Enigma Demystified.” In The Disability Studies Reader, edited by Lennard J. Davis, 179-192. New York, NY: Routledge, 2010.

Disability and Representation. “The Problem with Person-First Language: What’s Wrong with This Picture?” http://www.disabilityandrepresentation.com/2012/05/30/the-problem-with-person-first-language-whats-wrong-with-this-picture/. May 30, 2012. Accessed May 30, 2012.

Garland-Thomson, Rosemarie. “Staring Back: Self-Representations of Disabled Performance Artists.” American Quarterly 52, no. 2 (Jun., 2000): 334-338. http://www.jstor.org/pss/30041845.

Garland-Thomson, Rosemarie. “The Politics of Staring: Visual Rhetorics of Disability in Popular Photography.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 56-75. New York, NY: Modern Language Association of America, 2002.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

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

Smith, Phil. “Whiteness, Normal Theory, and Disability Studies.” Disability Studies Quarterly 24, no. 2 (2004): 1-24. http://dsq-sds.org/article/view/491/668.

Williams, Patricia. Seeing a Color-Blind Future: The Paradox of Race. New York, NY: Farrar, Strauss, and Giroux, 1997.

© 2012 by Rachel Cohen-Rottenberg

So Who are You Calling a Retard, Ann?
Oct 23rd, 2012 by Rachel Cohen-Rottenberg

By now, most people are aware of last night’s tweet by Ann Coulter, in which she commented upon the presidential debate in a manner consistent with her usual good taste and civility:

Oh, yes. Another disability slur. Another piece of mockery. Another way of saying how much you despise someone by comparing that someone to a disabled person. Oh, ha ha ha. So very clever. It just never seems to get old, does it?

Let’s start with the simple facts: Ms. Coulter used this slur against the President of the United States. She called the President of the United States a retard. You don’t have like Obama and you don’t have vote for Obama to know that you show some respect to the man by virtue of the elected office he holds. Maybe they didn’t teach this particular civics lesson at Cornell, where Ms. Coulter went to school, but they taught it at my elementary school in Brookline, Massachusetts, and most people who understand what it takes to hold together this fragile entity called a society understand that you have to show some respect to the office of the President and to the person who holds it. The man was, after all, elected by We The People.

But what’s worse — much, much worse — is that Ms. Coulter cast out a slur just as hateful as the N-word, or kike, or faggot. It’s hate speech. And it’s not just about some nameless, faceless people out there. It’s about intellectually disabled people, it’s about developmentally disabled people, and it’s about anyone with a disability who has been called a retard, or considered a retard, by people in desperate need of a clue.

So let’s put a face on who you’re calling a retard, shall we Ann? Because it wasn’t just the President. It was all the disabled people you decided to slur as well.

Right here is my friend Lydia — my beautiful, loving, kind friend Lydia. This is Lydia, who has autism, anxiety, periodic episodes of depression, and a laundry list of physical diagnoses. She also happens to love her church, cats, and the color pink, and she writes books, poetry, and music.

That’s who you mean when you use the word retard, Ann. You’re not just talking about some abstraction out there. You’re talking about people with hearts and minds. You’re talking about human beings who love and are loved. You’re talking about me and mine.

© 2012 by Rachel Cohen-Rottenberg

Just Don’t Call Me Inspirational
Oct 18th, 2012 by Rachel Cohen-Rottenberg

For the first 50 years of my life, I was singularly uninspiring. As a child, I ate Lucky Charms for breakfast (the green, yellow, and pink marshmallows, of course, not the cereal or the milk), and while in school, I was the poster child for compliance, paying attention to my teachers and moving from grade to grade. I went on to college and, when I became an adult, I made a paycheck at jobs that had nothing extraordinary about them. My titles included cashier, short-order cook, dishwasher, babysitter, housecleaner, graduate student instructor, and senior technical writer. I got married, had a kid, got religion, bought a house, got divorced, got married again, raised chickens, took walks in the woods, laughed, cried, lost religion, and tried to get a decent amount of sleep.

And then I was diagnosed with Asperger’s and, oh my God in heaven, I became an inspiration — not just in the present tense, but retroactively. Everything that had once been ordinary became extraordinary. It was entirely against the laws of physics, and yet, it was palpably so.

I had not realized how inspirational I was until, shortly after my diagnosis, I had occasion to go to a routine doctor’s appointment. My husband came with me. After some conversation, the nurse began preparing me for an ECG. For some reason that I still do not understand, the nurse (who had only just met me) began talking about her son Joey, who has autism, and how they never, EVER use the word autism in their family with reference to Joey. As she’s talking, she’s describing incidents in which Joey’s autism would be patently obvious to even the most casual observer, but she’s insisting that the word itself must never be spoken. Joey is just quirky, different, odd. Joey cannot be called autistic.

As I was lying there on the table, I took it into my head to say something. Maybe I just felt bugged by the fact that she thought autism was some sort of dirty word that had to be hidden in plain sight in her own house. Or maybe my super-sensitive auditory system was begging me to please, please, just say something, anything, to interrupt the torrent of words coming at me. Whatever the reason, I decided to share.

I said, “I’m autistic, you know.”

And the next words out of her mouth were, “You ARE? And you’re MARRIED? Do you have KIDS?”

I assured her that I did — a teenage daughter, three grown stepchildren, and a godson.

“Oh my God,” she said. “You’re so INSPIRATIONAL.”

Mind you, at this point, I’m lying on a table in a doctor’s office in a hospital gown. Where was the inspiration? I made a mental checklist of what had happened in the room. My husband and I had come in together. I had spoken of my kid, stepkids, and godson. The nurse had spoken about the test. I had asked why I needed to have an ECG, given that my blood pressure is low, that I have no heart disease, and that I have no family history of heart disease. I had learned that the doctor does baseline ECGs for all of his patients over the age of 35. I had assented to the test.

My being inspirational seemed to be about very basic things — about speaking, about asking questions, about being married, about having kids, and about being in the doctor’s office for an ECG. That’s all the nurse knew about me, and that was enough.

I soon learned that I was even more inspirational than I’d thought. Not only was my present life inspirational, but my whole life had been inspirational as well.

I was at a therapeutic horseback-riding lesson and my instructor, who had read my memoir, used the I-word to describe my story. Now before you begin thinking that I’ve had a very exciting life, parachuting with life-saving medicines into war-torn countries, and that it is all described in gripping detail in my autobiography, I must make full disclosure: My life has been pretty pedestrian. Really. My memoir is about struggling through 50 years of everyday life undiagnosed, and then learning to adapt to disability, and then finding some peace with who I am. Interesting to some, if my book sales are any indication, but not the stuff of drama.

I know that my instructor was trying to be kind. I know that she was telling me that she thinks highly of me. But as soon as I heard the word inspirational, my heart sank. Inspirational is such a distancing word. It’s a way of telling me that I am other, and that if I communicate, or get married, or have kids, or go to a doctor’s appointment, or search to be at peace with myself, just as most people on the planet do, the response will be different from what most people on the planet encounter. The response to my struggle to be fine with who I am will not be: You know, I’ve really struggled with finding peace with myself, too. The response will be: It’s so amazing that you’re disabled and you’ve found peace with yourself! The implication, always, is that the other person simply could not imagine finding peace inside disability. And of course, the hidden danger of inspiring people by not hating yourself is that your detractors will say that if you feel peaceful, you’re either deluded or not really disabled in the first place.

So here in mid-life, and entirely without my consent, I have become an inspiring crip. I am often very curious about the picture of disability that underlies the figure of this inspirational creature. I realize that most people, even parents raising disabled children, get their ideas about adult disability second-hand, largely from medical and media representation. Most people have very little everyday experience of adults with disabilities, and so they have these pictures in their minds of who we are and what our lives are like. And it’s these representations, and not our lives themselves, that create the very idea of inspiration. The nurse preparing me for the ECG thought I was inspiring not because speaking, and asking questions, and being in a doctor’s office, and having a husband and kids are inspiring in and of themselves, but because they are so out-of-kilter with what she believed life-long disability to be. In her mind, I should not have been doing any of those things, so the fact that I could do them was nothing short of amazing.

One of the oddities of being diagnosed in mid-life with a disability I’ve always had is that I get to watch people assign different meanings to exactly the same events pre-diagnosis and post-diagnosis. My neurological condition has not changed. What has changed is that my hidden disability now has a label that I do not hide. That is all — and that is everything. In the past, I was just a kid getting out of bed and brushing my teeth in the morning. I was just a college student, studying for exams. I was just a grown-up, shlepping myself to work every morning, sharing my life with someone, and having a family. It was all quite ordinary. It was full of bills to be paid, oil to be changed, and groceries to be gotten. It still is. It’s no big deal. It’s all in what people like to call the ordinary course of things.

Unless you speak your disability. And then it’s all an inspiration.

That inspirational quality has nothing to do with me. It has to do with the distorted pictures that people carry about disability. So when people tell me that I’m inspiring, as much as my ego would like to latch on to the approbation and my heart is ready to accept anything so long as it’s given kindly, I simply cannot claim the title, because it’s not about me at all.

I’m just trudging through life like everyone else. So come and trudge along beside me. Just don’t call me inspirational.

© 2012 by Rachel Cohen-Rottenberg

The Body as Social Theory: An Analysis of Tobin Siebers’ Disability Theory
Oct 14th, 2012 by Rachel Cohen-Rottenberg

Following is my first critical annotation of the semester.

—-

In his 2011 book Disability Theory, Tobin Siebers raises a number of issues critical to disability studies. Siebers addresses the questions of how disability theory and other forms of critical theory can challenge and inform one another, how disability theory can move past the poststructuralist position that all experience is simply a linguistic construct and give voice to the embodied experience of disability, and how identity politics can move the disability rights movement forward in its struggle for universal access. Underpinning all of these issues are two basic questions: How do we overturn the medicalized representation of disability that portrays impairment as a purely individual matter of physical functioning? And what strategies can we use for representing disability, in Simi Linton’s words, as “a social, political, and cultural phenomenon” (Linton 1998, 133)?

In answering these questions, Siebers explores two related lines of thought. First, he addresses the issue of how to redefine disability identity not as the property of an individual, but as a form of social theory that represents the social and political experience of disabled people. Then, he argues for a paradigm that addresses itself not to individual human bodies, but to the shape, form, and function of the archetypal body for whom our culture is constructed — the body that is welcome in public spaces, the body that has the right to consensual sexual activity, the body that signifies human worth. He concludes that the only way to ensure human rights for disabled people is to represent disability not as an individual calamity, but as the common inheritance of all human beings whose bodies are frail and vulnerable, and who depend upon one another, throughout their lives, for protection and support.

As a professor specializing in disability studies in the departments of Arts and Design and English Language and Literature at the University of Michigan, Siebers concerns himself, first and foremost, with the question of why disabled people are oppressed in our culture. The answer lies in what he calls the “hyperindividualization” of disability (Siebers 2011, 45). Our society, he notes, represents ability as a generalized human trait; in fact, ability is one of the markers of humanity (Siebers 2011, 10). Disability, on the other hand, becomes an individual trait, belonging to unfortunate persons in their particularity, but not representative of humanity as a whole (Siebers 2011, 10). I find this differentiation between ability and disability particularly useful in thinking about what Robert Murphy refers to as the “quasi-human” status of disabled people (Murphy 1990, 110). Does the fact that our culture views disability as a feature of individuals work against seeing disability and humanity as synonymous? After all, if disability is not a part of shared humanity, then it places human beings with disabilities outside of the collective of humanity. The status of the disabled outsider is clear, for example, in the work of Simon Baron-Cohen, who writes that because of an alleged empathy deficit, autistic people are lacking “one of the quintessential abilities that makes us human” (Baron-Cohen 2001, 3).

As became apparent to me in reading Siebers’ discussion of the individualization of disability, the dehumanizing trope of autistic people lacking in empathy is just one iteration of a larger canard against disabled people in general: the charge of narcissism. While Siebers does not specifically address the characterization of autism as an empathy disorder, he points out that the psychological literature is rife with the idea that disability and suffering (nearly always considered synonymous) render disabled people narcissistic; because of their impairments, the literature alleges, disabled people are self-absorbed, trapped in a world of their own, uninterested in anyone else, and unable to love (Siebers 2011, 38-40). Narcissism, much like the autism, becomes an expression of a pathologized individualism. Therefore, when people with disabilities attempt to communicate their pain, advocate for assistance, or struggle against their oppression, they face the charge of being not only hopelessly trapped in their self-absorbed individuality, but also fully responsible for the responses that ensue (Siebers 2011, 34-35). This form of blaming the victim is familiar to those of us who have heard the oft-repeated explanation that a parent or caregiver who kills a disabled person does so under the pressure of the person’s purportedly limitless demands. For example, after the murder of four-year-old Daniel Corby, a local ABC affiliate reported that his mother “was a stay-at-home mother pushed to the edge handling a difficult child with autism” (ABC10 News 2011). The victim becomes responsible for the violence that someone else perpetrates. As Siebers notes, “In short, this is the logic: we killed him, but he made us do it… A more sinister form of violence could not be imagined” (Siebers 2011, 44-45).

It is the hyperindividualization of disability, Siebers believes, that makes disabled people so vulnerable — physically, socially, and politically. I’ve long felt that if others see a person as simply a single individual, they see that person fully alone, unshielded by any group, and available for victimization. Until I discovered the disability community and found out that I was not alone in my experiences, I saw myself as similarly isolated and similarly vulnerable. In this, I am not unique. The distorted perceptions of others, combined with a distorted perception of the self, create the cultural representation of a disabled person who is always an individual, alone and apart. Such a representation helps to create an environment in which disabled people are easily victimized:

[T]he deaf boy on the bus may be entitled to individualized educational planning and medical services, but this special treatment, since it is based on “special rights” and not “civil rights,” exposes him to great isolation and suffering because it ends by symbolizing his individuality as such. (Siebers 2011, 45)

As Siebers notes, the emphasis on disabled people having “special rights” (accruing to individuals) rather than “civil rights” (accruing to members of a group) leaves them particularly vulnerable, because it takes them outside the collective humanity of others and, therefore, outside the protection afforded by the body politic

In order to create a theory of the body that moves past the disempowering individualization of disability, Siebers begins by viewing disability identity as a form of social theory that exposes the power relations between able-bodied and disabled people (Siebers 2011, 33). Although from the center of mainstream culture, ideologies such as ableism — the belief that ability is the measure of human worth — are taken for granted and rendered invisible, disability identity can help to make ableism apparent by describing its impact; Siebers speaks to the power of minority identity to uncover ideology when he writes that the lives of those on the margins “create identities and perspectives, embodiments and feelings, histories and experiences that stand outside of and offer valuable knowledge about the powerful ideologies that seem to enclose us” (Siebers 2011, 8). In this formulation, suffering becomes not an impetus toward narcissism and enclosure in the individual self, but a way of identifying the injustices that cause one’s pain (Siebers 2011, 190). Moreover, a disability identity is not about embracing suffering, but about understanding, analyzing, and critiquing the social structures that cause it (Siebers 2011, 190). The social theory inherent in disability identity, Siebers believes, can lead disabled people to realize that their personal suffering is shared and to join together to create safety, community, and justice (Siebers 2011, 193).

In construing identity as social theory, Siebers moves beyond strong social constructionism into philosophical realism in a way that is very promising for both academic theory and on-the-ground activism. Strong social constructionism, according to Siebers, poses social identity as a construct, but tends to see it as a linguistic representation first and foremost, not as a mode of political analysis and activism (Siebers 2011, 55-56). According to philosophical realism, however, it is precisely because our identities are social constructs that they provide a great deal of information necessary to social analysis and activism. Siebers writes:

Realists, like social constructionists, believe that reality is socially produced. Unlike social constructionists, they believe that social reality, once made, takes on a shape, politics and history that belong to the realm of human action, and as part of human action, it is available for rational analysis and political transformation. (Siebers 2011, 82)

Up to now, I’ve been a dyed-in-the-wool social constructionist, but I’ve always felt somewhat limited by it. The strength of social constructionism lies in its dual understanding that we cannot view bodies outside of culture, and that this insight, in and of itself, is liberating. To some extent, I agree that the core insight offered by social constructionism frees one’s mind from essentialist notions of disability, but as Siebers points out, one can easily become stuck in the individualistic notion that one’s liberation depends on intellectual and emotional clarity (Siebers 2011, 79-80). Much more is needed. Social constructions have a constant impact on the lives of human beings — an impact that we can analyze, work with or against, and change.

In further developing his analysis of identity as social theory, Siebers posits the concept of the “social body,” the body for whom shared spaces are designed — or not designed (Siebers 2011, 85). By looking at the body in this way, Siebers notes, one can easily see the lines of inclusion and exclusion drawn by the architects of architectural and social locations (Siebers 2011, 124-125). I can attest to the power of this way of approaching constructed spaces. With the paradigm of the social body in mind, I now look at a building with stairs but no wheelchair ramp, and I see a building designed for a social body that can easily walk on two legs. When I walk by a building in my town with a sign that reads “Handicap Access: Back of Building,” I am reminded that the front entrance of the building was designed for a social body that is allowed to use the front door, and that another form of the social body must use the back door. In a particularly stunning section of the book, Siebers himself literally brings home his analysis by determining the nature of the social body that is welcome in his own house. After observing such indicators as the width of the doorways, the number and locations of staircases, the heights of cabinets, and the placement of doorknobs and light switches (Siebers 2011, 85-88), he concludes that the social body for whom his house was designed is limited indeed:

In sum, people in wheelchairs, people with diminished sight and hearing, those with difficulty climbing stairs, people uncomfortable reaching high or bending low, and those unable to grasp objects do not fit easily in my house. Nimble six-footers, with an intuitive sense of dark spaces, acute hearing, and a love of staircases do. These are social facts readable in the blueprint of my house. (Siebers 2011, 88)

For me, one of the most powerful aspects of the concept of the social body is that it makes all bodies visible. No body can appear to be “natural” or “neutral.” As Phil Smith notes, under the pressure of social critique, normalcy cannot simply fade into the background as an uncontested category, utterly taken for granted, its privilege and power hidden (Smith 2004, 13). Some bodies are included, and others excluded — not by nature, but by design. Thus, rather than allowing ourselves to think in terms of inclusion and exclusion, a dichotomy that always presupposes a group in the center holding power over a group in the margins, Siebers suggests thinking in terms of accessibility and inaccessibility (Siebers 2011, 94). And so we must ask the questions: On behalf of which social body has a space been made accessible? For which social body is it inaccessible? These questions help to move the focus from individuals who must fear exclusion to the concept of a social space in which no one has the power to deny entrance to anyone else.

Ultimately, though, the concept of the social body does not heal the differential in the human rights granted to disabled and non-disabled people. How do we mend that rift? Siebers’ answer is both simple and profound: If we recognize the fragility of human life as a common inheritance, then disability becomes central to human life, and not its tragic flaw. Because all bodies are vulnerable to injury, illness, and age, disability is not the exception, but “a defining characteristic of human beings” (Siebers 2011, 178). Once we represent disability as a common human experience, it becomes much more difficult to justify withholding rights because of physical difference. As Siebers puts it so eloquently:

What difference to human rights would it make if we were to treat fragility, vulnerability, and disability as central to the human condition, if we were to see disability as a positive, critical concept useful to define the shared need among all people for the protection of human rights? (Siebers 2011, 180)

Moreover, in seeing fragility as central to human life, Siebers argues that we can come to see that independence and dependence are both poles of a false dichotomy — a dichotomy that derives from an individualist paradigm untrue to the nature of humanity. This paradigm, Siebers believes, must make way for a new framework that stresses interdependence, because even those who possess (at least temporarily) what our culture considers normative bodies have a mutual dependence upon one another (Siebers 2011, 182-183). I could not agree more. All human beings must cooperate in such activities as buying and selling goods, constructing buildings, growing food, and raising children. Human society depends upon people benefiting from goods and services that no one person can create alone. Our lives depend upon such interdependence.

The ever-present fact of the fragility of human life is one that our culture turns from in its zeal to celebrate strength, youth, and able-bodiedness. Thus, when disabled people rely upon others for care or assistance, it is considered a loss of dignity and a source of shame. One of the most powerful messages of Siebers’ book is that such a response is neither realistic nor inevitable. His work invites us to consider the transformation in human society that would occur if the reliance of a disabled people upon other human beings were considered neither a shameful nor a tragic turn of events, but a reminder that all human beings rely upon one another for protection, for sustenance, and for life itself.

References

ABC10 News. “Boy, 4, Allegedly Killed By Mother Identified.” http://www.10news.com/news/boy-4-allegedly-killed-by-mother-identified. April 3, 2012. Accessed October 14, 2012.

Baron-Cohen. “Theory of mind in normal development and autism.” Prisme 34 (2001): 174-183. http://www.autism-community.com/wp-content/uploads/2010/11/TOM-in-TD-and-ASD.pdf.

Linton, Simi. Claiming Disability: Knowledge and Identity. New York, NY: New York University Press, 1998.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

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

Smith, Phil. “Whiteness, Normal Theory, and Disability Studies.” Disability Studies Quarterly 24, no. 2 (2004): 1-24. http://dsq-sds.org/article/view/491/668.

© 2012 by Rachel Cohen-Rottenberg

Making a Mockery of Disability
Oct 12th, 2012 by Rachel Cohen-Rottenberg

My friend Karla Fisher is a Senior Program Engineering Manager at Intel, an autism educator, the General Manager of a professional sports team, the mother of two thriving adult children, and the owner of the excellent Facebook resource Karla’s ASD Page.

On October 17, Karla attended the Autism & Asperger’s Syndrome Conference in Eugene, Oregon. Karla had worked with the sponsors of the conference and, as a successful autistic woman, had written a piece for one of their books. She was especially excited about the prospect of attending the talk given by Tony Attwood.

I’m tempted to say that Karla was disappointed in Attwood’s talk, but disappointed doesn’t begin to cover it. In fact, what Karla saw and heard that evening was deeply offensive to her. Following is her narration of the events; the speaker she refers to is Tony Attwood.

The session began well with the speaker talking about ASD versus NT as a culture. I was happy to hear this opening. I also know that I had some influence on this perspective as I had given this to him privately in email and also through at least one of the clinicians that he works directly with. From there, however, the cultural perspective thing sort of went downhill. The speaker was dynamic, quick, fluid and exceedingly witty. Humor was his main way of reaching his audience and he delivered well judging by the audience who was laughing several times each minute. He was very good overall as a speaker. The problem was that he used humor about autistic people primarily and he spoke ONLY to the NTs in the audience despite the fact that he knew we were there.

An example of this is when he talked about how he knows when a Mother (or Father) of a child is autistic during the session where he delivers the message about autism diagnosis for their child. He said, “I have a good picture of how it looks when an NT Mother hears this message…” (and here he does NOT describe what that looks like but assumes that I will just know so I sit there with a blank picture) Then he goes on to say that he knows the parent is autistic when he sees the following… He stiffens his body up then and puts on his robot voice and he says, “Okay, so let me see if I got this. I need to see about OT, ABA, understand about sensory integration….etc…).” As he is going through this I am thinking to myself that YES, this is the good way to approach the information that there is a diagnosis. Facts will help the child and this person was seeking facts… But my thoughts are disrupted by an audience who is in full belly laughter at this person’s imitation of an ASD person. I found myself wondering what was so funny. Then I wondered if I said anything if it would not be turned around on me as not having humor. My heart grew heavy as I realized that these people were supposed to understand and accept me. That these are the people who are committed to making my life better.

Ironically, I was wearing the same black hoodie that I wore earlier in the week when I was interviewed and accepted into this key job at one of the largest high tech companies in the world. And yet the goodness of my new position and all the praise and accolades by my coworkers and friends was completely lost in the moment that the room burst into laughter when this professional speaker made fun of the “ASD uniform” (the one which I was clearly wearing).”

If I may summarize: Attwood was mocking autistic people at an event for parents and professionals who wanted to learn more about how to help autistic people. To put his statements in the proper context, Attwood knew that Karla was in attendance. In fact, he made specific reference during his talk to the fact that there were several autistic people in the room. He knew they were there. And yet he engaged in such mockery anyway.

I know what some of you are thinking: “Oh, Rachel. You’re overreacting. Mockery is much too strong a word. It was just good-natured fun.”

No. Good-natured fun is between people of equal social and political power. When you have a position of greater power and privilege, and you satirize people who comprise a stigmatized, vulnerable, and misunderstood minority, it’s not good-natured fun. When you parody the speech and the body language of people who are considered social burdens, walking tragedies, and quasi-humans, it’s mockery, and it drove a tough 50-year-old woman who plays contact football to tears. You don’t do it no matter who you are or where you are — especially when you are making fun of people whom the world feels it perfectly acceptable to laugh at anyway. With your power, you put the imprimatur of respectability on such behavior. In this case, not only does Attwood have all the privilege that comes with being white neurotypical man; he also carries a great deal of authority in the world of autism. So when he makes fun of autistic people by grotesquing a stereotype, he sends the message that autistic people are here to be laughed at, to be mocked, and to be parodied simply for being who we cannot help but be.

By way of analogy, could you imagine what would happen if a well-known Protestant minister, in a public religious forum, satirized the difference between Christian prayer and Jewish prayer? What if such a minister gave as an example of Christian piety the Lord’s Prayer, delivered in a sober and restrained voice, and then, in contrast, put on a yarmulke, tzitzis, a fake beard, and sidecurls, and started rocking back and forth madly, mumbling incomprehensibly in a sing-song voice, in order to elicit raucous laughter from the congregation? He’d never hear the end of it. The Anti-Defamation League of B’nai Brith would be all over it. The network pundits would hold forth. Internet memes of every variety would appear. Someone would start a petition demanding an apology and his immediate resignation.

But none of that happens in the world of disability. Because the average person does not think that anything is wrong what-so-fucking-ever with making fun of disabled people. Because the average person thinks of disabled people as broken and therefore worthy of scorn. Because it’s still acceptable to laugh at physical and cognitive difference. Because disabled people are considered damaged goods ready for the trash heap, and anyone who thinks they’re worthy of reclamation and respect ends up having the same mockery cast upon them.

One of the most telling things about Karla’s description of Attwood’s performance was that he did not satirize what happens when non-autistic, neurotypical (NT) parents receive an autism diagnosis for their child. There is a stereotype of what happens, and since he was in the business of exploiting stereotypes for cheap laughs, he would have been free to exploit that stereotype as well. He could have parodied the NT autism parent as becoming hysterical, as believing the world was ending, as losing all hope. That’s the stereotype. But he didn’t. And do you know why he didn’t? Because the NT parents in that audience would have risen up in all their glory and shouted him down. And rightly so. No one wants to see their fear and pain for their disabled children mocked, even if they have journeyed past that fear and pain. People would have been irate, and some of them would have stomped out of the conference hall in protest.

And yet, somehow, it didn’t occur to him that the autistic people in attendance would feel the same way. He didn’t think about the fact that Karla Fisher would be sitting there in her favorite black hoodie, driven to tears.

But you know, this isn’t about Karla’s hurt feelings. It’s not about one person. It’s about her hurt being a signal that something in that room was very, very wrong — that the power relations were awry, and that the flow of empathy and respect were going in directions that favored some and mocked others. It wasn’t just about that room and it wasn’t just about Karla. It was about a world in which it is still acceptable to mock disabled people, in which it is still acceptable for people to laugh uproariously at it, and in which it is still acceptable for people to dismiss it by saying it’s just all in good fun and there was no harm meant.

Perhaps there was no harm meant. It doesn’t matter. What matters is that harm was done. Harm is done by such behavior every single day — on school playgrounds, on television, in workplaces, in families, on buses, and in classrooms — for public amusement and for the infliction of private anguish. And when someone with authority engages in it, it only empowers people to go out and do it some more.

It’s not just autistic people who care about this. It’s disabled people. It’s the parents and friends of disabled people. It’s all of us.

This disrespect in the thin guise of humor has to stop — for the disabled people who are now here, and for the rest of humanity vulnerable to becoming disabled, through illness or injury, in the blink of an eye.

The fates may ordain that one day, Dr. Attwood, you are the person with a disability, struggling against the ignorance and prejudice of the world, and that you have to sit in a room and listen to someone mock your voice, your movements, your perspective, your pain, your struggle to speak. I hope you never have to go through that kind of disrespect. I wouldn’t wish it on anyone.

But imagine how you would feel. Just imagine it. And then stop contributing to a world in which it happens.

© 2012 by Rachel Cohen-Rottenberg

Using Disability For Propaganda Purposes
Oct 10th, 2012 by Rachel Cohen-Rottenberg


Source: Facebook

I happened across this graphic on the Facebook page of an anti-vaccination group called the Vaccine Information Network (VINE). The page propagates the twin falsehoods that a) vaccines don’t work and b) vaccines are linked to rising autism diagnosis rates and a purported epidemic of other conditions.

Now, no one has ever denied that severe vaccine reactions occur, but these are rare. And I certainly support the idea of acknowledging those who have been harmed by these reactions. But I do not support propaganda that vastly overstates the number of these injuries as part of a campaign to lower vaccination rates, and I most certainly don’t support propaganda that uses images of disabled people to do it.

Of course, the graphic on the VINE page does not only use images of disabled people for a cause that isn’t ours. No. It does much more. It uses images of disabled people to engender fear. It uses these images to portray disabled people as pitiful, frightening, dangerous, worthless, and without agency. It represents disabled people as diseased and broken. It uses the worst stereotypes of disability as tragedy and social burden and passive victimization. And it does this for the sake of its own agenda, without any consciousness at all of the potential for harm of such stigmatizing images.

Shame on you, VINE. Your ideas about vaccination potentially endanger the public health, and you dehumanize and demean disabled people in the process of propagating those ideas. Time to find yourself a new moral compass. The one you’re using just isn’t working.

© 2012 by Rachel Cohen-Rottenberg

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