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Studies Prove It: Autism is Linked to Being a Carbon-Based Life Form
Nov 29th, 2012 by Rachel Cohen-Rottenberg

I’ve started compiling a list of all of the studies that link autism to… well, everything. I tend to find most of these studies unconvincing, to put it mildly, and when I look at them in list form, I have to remind myself that I’m not looking at works of satire. In fact, I have to remember that, at this absurd historical moment, a bunch of people actually get money for doing this kind of research, and that they are not embarrassed to associate their names with it.

Maybe it’s just me, but when I look over this list, all I can see is a whole lot of researchers jumping on the gravy train that is my neurology. Not that I’m insulted. In fact, I’m deeply honored that my neurology is a source of income for so many. After all, I wouldn’t want to see autism researchers lacking for food, shelter, and social status.

So carry on, people. Of course, at some point, you might consider making a living researching the sorts of things that would actually help people such as myself. Because, you see, when you reach my age, it just plain doesn’t matter whether you have autism because your mother sucked too many exhaust fumes when she was pregnant, or let you sit too close to the color TV, or was stressed out and depressed while you were in utero, or was abducted by little green men from Mars. (No, there hasn’t been a study linking autism to alien abductions. Yet.)

So if you all could do some studies on why typical folk have such a hard time providing access and employment to disabled people, or why they think you’re lying about your disability because you look perfectly normal, or why they won’t slow down for 10 seconds to talk to a person with a different communication profile, I’d be ever so grateful. These are the questions that plague me. Where autism comes from? Not so much.

Here is the list. I will be updating it for some time, apparently.

13 things ‘linked’ to autism
Age of mother affects child’s autism risk
Ambient Air Pollution and Autism in Los Angeles County, California
Amino-Acid Deficiency Found to Underlie Rare Form of Autism
An Immune Disorder at the Root of Autism
Autism and baby size linked
Autism and early exposure to traffic pollution linked
Autism And Pollution Study Links Autism With Prenatal Exposure To Traffic Pollution
Autism, asthma, inflammation, and the hygiene hypothesis
Autism Caused by Depression of Mothers?
Autism linked to difficult birth
Autism linked to gut bacteria, study finds
Autism Linked To Industrial Food Or Environment
Autism Linked To Moms’ Antidepressant Use
Autism Researchers Discover ‘Epigenetic’ Changes
Autism risk may be revealed in babies’ cries
AUTISM: Does head size provide the clue?
Birth Complications and Autism
Can Cell Phones Cause Autism?
Can low cholesterol cause autism?
Can We Blame Rain for the Autistic Brain?
Chemicals found in plastics linked to Autism
Children conceived in winter have a greater risk of autism, study finds
Children with autism have distinct facial features
Clinical research: Twin study links low birth weight to autism
Does Pet Shampoo Cause Autism? Let’s Hope Not…
Excessive Protein Synthesis Linked To Autistic-Like Behaviors
Extremely premature infants more likely to test positive for autism
Father’s Age Is Linked to Risk of Autism and Schizophrenia
Finger length related to autism!
Flu, fever linked with autism in pregnancy study
Head Size Tied to Regressive Autism in Boys
High Birth Weight in Children with ASD and Their Unaffected Siblings
Is Autism a Prenatal Parasite-Deficiency Syndrome?
Is Autism Statistically Linked to Early Non-Maternal Child Care?
Is excess folic acid supplementation a risk factor for autism?
IVF Linked to Autism, Israeli Study Suggests
Large study finds ‘baby sibs’ at high risk of autism
Later-born children at higher risk for autism
Link Found Between Child Prodigies and Autism
Living Near a Highway May Contribute to Autism Risk
Magnesium Deficiency and Autism
Major Stress During Pregnancy Linked To Autism
MAO-A Theory of Autism
Medical journal: Study linking autism, vaccines is ‘elaborate fraud’
Men who don’t find curvy women attractive ‘could father children with autism’
Mom’s Obesity, Diabetes Linked with Autism and Developmental Delays
Neuroscientist Links Autism with Internet Use
New Evidence Links Immune Irregularities to Autism, Mouse Study Suggests
New Study Implicates Environmental Factors in Autism
Newborn blood may reveal early immune signs of autism
NIH-funded Study Shows Pre-birth Brain Growth Problems Linked to Autism
Perinatal Risk Factors for Infantile Autism
Refrigerator Mothers
Researcher sees link between vitamin D, autism
Scientific Study Links Anti-depressants In Drinking Water To Autism
Scientists Find ‘Baffling’ Link between Autism and Vinyl Flooring
Scientists Find Link Between Autism and Brainwaves
Scientists Link Gene Mutation to Autism Risk
Severity of Autism Linked to Length of Pregnancy
Sibling spacing may be tied to autism risk
Study links autism, diabetes in pregnancy
Study links folic acid to lower autism risk
Study: Autism risk tied to mom’s obesity during pregnancy
Study finds new evidence that vitamin D decreases risk of autism in children
Top 10 Chemicals Most Likely to Cause Autism and Learning Disabilities
Tuna and autism for unborn child – link?
TV Implicated In Rise Of Autism
TV Really Might Cause Autism
Use of Birth Certificates to Examine Maternal Occupational Exposures and Autism Spectrum Disorders in Offspring
Wi-Fi linked to childhood autism
Women Abused as Children More Likely to Have Kids with Autism

© 2012 by Rachel Cohen-Rottenberg

ZOMG! Look! A Disabled Person Does Something!
Nov 1st, 2012 by Rachel Cohen-Rottenberg

On October 23, CBS News in New York ran a story about an autistic high school football player who kicked a game-winning field goal. The event was, according to the headline, “a moment for the ages.” I am not exaggerating:


Source: CBS New York

I’m going to parse the article a little bit at a time. It’s a combination of some great statements by the young man and his parents, and some absolutely atrocious inspiring-crip/perpetual-special-child material. It’s really a shame that the framing is so bad, because the statements from the player himself and the people involved in his life are really quite wonderful.

The article begins:

A high school student with autism becomes a hero on the football field. Sounds like a good movie doesn’t it? Well, it’s a true story.

So, right away, we’re in supercrip mode. The guy is a hero. And, at the same time, we’re led to believe that it is so absolutely unfathomable that a disabled guy should be a hero that it’s just like fiction. And since it actually happened in real life, we should all sit down before we faint.

It’s also kind of interesting that one kind of media is calling upon a different kind of media in order to frame the rather mundane occurrence of a football player kicking a winning field goal. We’re being asked to see the story not only from the perspective of a news report, but also as a kind of theatre. So we have two levels of interpretation layered over the fact that a young man kicked a football through a pair of uprights.

What makes the lens even more distorted is that, despite the frame of a “good movie,” I can’t think of a Hollywood movie in which a disabled person becomes an athletic hero. I can think of some in which the disabled person dies (Hello Million Dollar Baby), or ends up running madly around the soccer field with his kid on his shoulders (Hello I Am Sam), or draws with his foot (Hello My Left Foot), but I’m drawing a blank on a film with this theme. Maybe there is one, but the fact that it isn’t springing to mind troubles me, because the lens is about something that eludes my grasp. I keep thinking, “Well, of course there is one… Isn’t there?”

The score was tied with just 21 seconds left on the clock Friday night. Out trotted Brick High School’s Anthony Starego, an 18-year-old kicker who’s used to facing adversity.

Uh oh. There’s that adversity word. Always with disability, there’s that adversity word, just to make the mundane appear extraordinary. Do people not understand that life is a difficult thing for most human beings, and yet, we somehow manage to do things?

Starego was orphaned at the age of 3 and then grew up with a long list of developmental issues. So when he jogged out on the field to attempt a game-winning field goal against favored Toms River North, one couldn’t blame him if he didn’t feel overwhelmed by the moment.

The young man has certainly faced his share of hardship in losing his parents. There is no denying that. But that’s not what the word adversity is really about here. It’s about his autism. It’s about his “long list of developmental issues.” It’s about his body and what a burden it appears to be for the person narrating his story. If he had simply been orphaned, it wouldn’t be a story. His disability is the focus.

What happened next was something usually reserved for Hollywood.

What? Disabled people don’t accomplish things in real life? Are we that boring?

And let’s be clear on what we’re talking about there. The young man kicked a field goal. A field goal. In a high school football game. Don’t get me wrong. It’s really fantastic that he won the game for his team. I’m completely excited for him. I’m just trying to understand why this is some sort of heroic and inspiring moral tale.

Oh, that’s right. The subtext is “A disabled person accomplished something, and we’re all shocked and amazed, because we all thought it was impossible, and now we have to make up a story about how it was nearly impossible.”

Okay. I’m getting it now.

He split the uprights and the place went crazy. But there was nothing ordinary about that kick. It was a lifetime in the making, CBS 2′s Otis Livingston reported Tuesday.

Wait. If you’re a high school football player, isn’t just about anything you do on the field “a lifetime in the making”? How is Anthony’s lifetime of working on his game any different from anyone else’s lifetime on that field? I’m assuming they all started out throwing a football in their backyards or at the park or in the street.

“As soon as the officials went like this, I was a blubbering idiot,” father Ray Starego said, demonstrating the hand movement for a successful field goal.

“I was just crying, but I wasn’t going to stop watching him because he was just jumping for joy. It really was unbelievable,” added Reylene Starego, Anthony’s mother.

Now, I love this part. I seriously do. In my book, the only people who get to cry and kvell and act like kicking a field goal is the greatest moment in the history of humankind are the parents. That’s what parents do. We get emotional. We get over-the-top emotional. About a game. Because we want our kids to be happy, and we want them to accomplish everything they set out to do, and the last thing we want is for them to come off the field in tears of disappointment.

I went nuts when my kid played goalie for the high school varsity soccer team. I got emotional. Every single time someone came near the goal, my heart was in my throat. Every single time my kid blocked a shot, I was beside myself with joy, relief, and excitement. All that stuff is in the job description of being a parent, and Anthony’s parents are clearly quite good at the job. More power to them.

If being the hero Friday night put Starego at the top of the mountain, his entire life has been an uphill battle getting there.

“When he came to us, he had been through 11 foster homes and he had had some difficulties. He had about six words to his vocabulary,” Reylene Starego said.

“He had kidney reflux; he had an asthmatic condition. Basically, it was a special needs adoption that we had gone through,” Ray Starego added.

The guy has gone through a lot, obviously. I wonder, however, why the young man’s medical issues are germane here and available for public view. Did the reporter really have to mention them? Aren’t they Anthony’s business?

Symptoms of autism include children performing repeated body movements. They often experience unusual distress when routines are changed, but those are the same traits that make Anthony a successful kicker.

Notice that we’re talking about an 18-year-old young man and his repetitive movements and love of routine, but the text refers to “children.” We’ve now gone from supercrip mode to infantilization mode. Funny how that works.

“Fifty times a day, that’s all he does. Just three steps back, one over and he hits the ball. That’s what he knows and that’s what he did,” coach Kurt Weiboldt said.

Anthony Starego agreed. As far as he’s concerned, practice makes perfect.

“I do the same thing over and over again. It helps me a lot, and I’m having the best day of my life,” he said.

I really love what Anthony is saying here. It shows the way autistic hyper-focus and perseveration can be assets in adulthood. And he’s clearly proud of his intense focus. Awesome stuff. I wish the story had stayed closer to Anthony’s perspective, because that’s the frame that would have been most interesting.

Children with autism also have trouble with social interactions, so making friends isn’t easy, but the football field is different. It’s a safe haven.

And now we’re back to “children with autism.” Apparently, the writer does not have Anthony’s intensity of focus. If he did, he would notice that Anthony is not a child, but a young man. The fact that the writer frames Anthony’s statements with infantilizing terms takes a lot of power away from Anthony’s perspective. It’s as though we keep switching frames, from seeing him as a child being spoken for, to seeing him as an adult describing his own process, to seeing him as a child being spoken for again. It’s as though his adult status is just too much for the writer to keep in focus.

“[Anthony is] just the man. He’s always happy, always puts a smile on your face,” Brick High quarterback Brendan Darcy said.

Oh, dear. Now, not only is Anthony a supercrip and a child, but he’s also special. I highly doubt that the quarterback would have said about any of his other teammates that they always put a smile on his face. It’s just not what high school football players tend to say about one another. But it’s just so inspiring to be on a team with a disabled guy, you know?

Do people really listen themselves when they refer to others as “always happy”? How is it possible for someone to always be happy? Or does his teammate just mean that Anthony isn’t scary, the way he thought an autistic guy would be? Or maybe he’s just surprised that an autistic guy is excited to play the game, instead of moping around feeling really crappy because he’s autistic.

Anthony said he doesn’t think of himself as being different than his teammates. He said he just has a job to do.

“I feel like I’m happy and calm and enjoying myself when I kick. [It’s] the time of my life,” he said.

You go, Anthony!

The Green Dragons’ only two wins of the season have come since Anthony became the kicker. He’s perfect on kicks, including that game winner. Their next game is this Friday against Lacey High School.

Here at the end of the piece, I feel almost let down. I know I shouldn’t. Anthony has a perfect record, and that’s very cool. But what I’m feeling is that this story should never have been about Anthony kicking a field goal. That’s not the real story. The real story is that after going through 11 foster homes, the young man got adopted by supportive people and didn’t end up in an institution, and now he gets to play football. Now that’s a story.

But that’s not a football story. That’s a “let’s do something about all the others who don’t have supportive families” story. And once you start thinking of all of those people who will never have Anthony’s opportunities, you don’t feel too inspired. You feel downright pissed off and depressed.

And we can’t have that.

References

CBS New York. “Autistic Player Has Moment For The Ages, Kicks Game-Winning Field Goal.” http://newyork.cbslocal.com/2012/10/23/autistic-high-school-football-player-has-moment-for-the-ages-kicks-game-winning-field-goal/. October 23, 2012. Accessed November 1, 2012.

© 2012 by Rachel Cohen-Rottenberg

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

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

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.

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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

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

Representing Difference as Pathology: An Example from Simon Baron-Cohen’s The Science of Evil
Aug 23rd, 2012 by Rachel Cohen-Rottenberg

I find it very painful to write about the work of Simon Baron-Cohen. I’ve done so extensively in the past, and this spring, I decided to take a break from it. But there is a passage in his latest book, The Science of Evil: On Empathy and the Origins of Cruelty, that has haunted me since I read it last year, and I feel the need to explore why. I’ve critiqued the book before, but somehow couldn’t touch this passage until now, and I think I understand why: The passage doesn’t simply speak volumes about how others view autistic people in particular, or disabled people in general, but constitutes a particularly telling example of the ways in which our society pathologizes difference and blames people outside the norm for the treatment we receive.

In Chapter 4: When Zero Degrees of Empathy is Positive, Baron-Cohen makes the extreme, pejorative, and wholly incorrect assertion that, for people on the autism spectrum, “Other people’s behavior is beyond comprehension, and empathy is impossible,” and concludes that autistic people have “zero degrees of empathy” (Baron-Cohen 2011, 117). He attempts to mitigate the impact of these statements by saying that autistic people are “zero-positive” because, in his estimation, our systemizing skills enable us to build such things as elaborate moral systems (my elaborate moral system is built on empathy, thank you, but I digress) and cutting-edge technology (for which I have no aptitude whatsoever, thank you, but I digress) (Baron-Cohen 2011, 122-123). Despite this apparent attempt to redeem us from the lack-of-empathy stigma, Baron-Cohen presents the story of a 52-year-old man named Michael, who has Asperger’s Syndrome, as representative of the lives of autistic people, and he characterizes Michael as almost robotic: controlling, anti-social, utterly logic-minded, and incapable of understanding other people’s feelings or of having any emotional responses of his own (Baron-Cohen 2011, 96-100).

To illustrate his view that autistic people are on the zero end of the empathy scale, Baron-Cohen begins by writing about Michael’s childhood. I find two things rather fascinating about Baron-Cohen’s rendering: 1) His descriptions of Michael’s childhood do not illustrate Michael’s lack of empathy, but the lack of empathy of the children around him, and 2) the wholesale lack of empathy on the part of “normal” children goes entirely unremarked. He writes of Michael:

Even as a child he found social situations confusing and stressful. He didn’t play with other children in the playground, was never invited to their birthday parties, was not picked to be on their team. He avoided the playground by going to the bottom of the playing field at primary school — alone — and counting blades of grass. In the winter when it snowed, he became obsessed with the structure of snowflakes, wanting to understand why each one was different. Other children in his class couldn’t understand what he was talking about because in their eyes all snowflakes looked the same. Although the teacher had told all the class that every snowflake is unique, it seemed that he was the only person in the class who could actually see the small individual differences in the snowflakes. The other children in the class teased him, calling him “snowflake brain.” (Baron-Cohen 2011, 97-98)

It’s difficult, at first, to grasp all that is wrong with this passage, because Baron-Cohen is uttering entirely prejudicial things in a very kind and reasonable tone. Let’s start at the beginning: He suggests that a sign of Michael’s lack of empathy is that he didn’t play with other children, wasn’t asked to their parties, and was the proverbial last kid picked for the team. Baron-Cohen seems to take it entirely for granted that Michael is at fault, and that it was quite natural that the other children would reject him because of his as-yet-undiagnosed disability. He gives not the slightest nod to the idea that perhaps Michael didn’t play with the other children because they themselves were unempathetic — because they would not tolerate his confusion and stress, because they rejected him based on his difference, because they shut him out from every birthday party, and because they didn’t want him on their teams. After continual social rejection, what exactly is wrong with a child running to the other end of the playing field alone and amusing himself as best he can? Counting blades of grass is not a normative response, but that doesn’t make it wrong; in fact, I can certainly understand why a stressed-out autistic kid who is being rejected for reasons he can’t fathom would try to calm himself with a counting ritual. Given the other possibilities for dealing with wholesale social rejection — lashing out in anger at others or doing harm to oneself — an obsession with grass seems to me an entirely non-retaliatory response, and says quite a bit about Michael’s gentleness. Not surprisingly, given the purpose of his narrative, the author never remarks upon this gentleness.

What I find most heart-wrenching, however, is the story of Michael’s fascination with the unique structure of each snowflake, and the ways in which the other children respond to it. Michael’s attentiveness to details that most people miss, and his love for the small and intricate beauty of the natural world, are deeply moving to me. The other children do not see what Michael sees and they do not understand his fascination, but Baron-Cohen does not tar this lack of understanding as a lack of empathy, despite the fact that he considers Michael’s inability to see what other children see, and his lack of interest in what gives them happiness, as prima facie evidence that Michael has an empathy disorder. I’m not sure on what logical basis a scientist could make such a subjective, one-sided, prejudicial assessment, but then again, it’s passages like this one that long ago caused me to give up on the idea of objectivity altogether.

Perhaps the most distressing part of the entire passage is the way in which Baron-Cohen assesses the children’s response: He writes that they “teased” Michael by calling him “snowflake brain” (Baron-Cohen 2011, 98). I take issue with Baron-Cohen’s use of the word “teased.” The children were not teasing Michael; they were calling him names and laughing at him. Teasing is good-natured fun between people of relatively equal power. There isn’t a hint of equal power here, and there is nothing good-natured about making fun of a beautiful thing that brings joy to an isolated, rejected kid. At best, several other children laughing at their defenseless classmate constitutes harassment; at worst, it’s bullying. Anyone who has ever been laughed at as a form of dismissal and exclusion knows exactly what I’m talking about. These are the kinds of microaggressions that accumulate to create self-doubt and self-hatred in those who are the targets of them. But Baron-Cohen does not seem to consider laughing at a vulnerable kid evidence of a lack of empathy in the “normal” children. In fact, he seems to imply that if Michael had any empathy for his classmates, he would have known better than to talk endlessly about snowflakes.

While Baron-Cohen’s much-cherished and erroneous belief that autism is an empathy disorder is the reason for the inclusion of this story in his book, the framing of the story is indicative of a much larger problem in writing about disability and other forms of difference: Non-normative people become responsible for our own social rejection. The accusations launched at Michael and, by extension, at us — that we’re incapable of “normal” human feelings and that we’re trapped in our own worlds — could just as easily be launched at those who reject us. How many “normal” people have enough human feeling to befriend and understand non-normative people? How many “normal” people are trapped in their own “normal” worlds, without any consciousness of what it means to be non-normative? The accusations of lack of caring and lack of engagement adhere to the ones who are different. Those in the majority are simply acting “normally” by doing all the things that, when non-normative people do them, are considered evidence of pathology.

These kinds of accusations are a form of victim-blaming that have no place in a civilized society. That people who consider themselves objective engage in it is an indication of how deeply entrenched a habit of mind it is.

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

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