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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2012 by Rachel Cohen-Rottenberg

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

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

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

“Yes.”

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

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

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

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

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

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

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

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

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

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

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

…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

http://www.facebook.com/ChildrensHospitalofPhiladelphia

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

Sign the petition at Change.org:

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

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

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

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

http://www.facebook.com/miastransplant

Together, we can help this child live.

—

Sources

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

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

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

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

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

—

© 2012 by Rachel Cohen-Rottenberg

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

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

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

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

and

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

therefore,

c) Autistic people have extreme male brains.

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

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

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

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

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

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

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

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

and

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

therefore

c) Autistic people have impaired theory of mind.

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

Sources

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

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

© 2012 by Rachel Cohen-Rottenberg

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Not too much confirmation bias there.

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

Source

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

© 2012 by Rachel Cohen-Rottenberg

© 2011 by Rachel Cohen-Rottenberg

Steven and I have been emailing back and forth for the past week and a half, and he’s given me permission to post the following comment he left in response to my post about Lorazepam:

I am sitting here in the UMass student center using the public computers.
I am 40 years old and homeless. I was an artist once, at least I thought I was.
I am about the walk to the bathroom and take my Colonopin, 2 mg. If I don’t my heart will be in my throat all day, pounding out an uneven and painful rhythm, interrupted only by bouts of sobbing and wondering how the hell I will make it through the day. The shelters were all full last night, slept in the car, it was 20 degrees last night and my exhaust is falling off.
My “Wife” (ex but not divorced after 4 year, insert long story here) is convinced I have Asperger’s, my son does. I read the criteria and if I used my highlighter to outline the applicable information it would go dry.
I wish I could figure out how to live on my own but I fail every time.
The reflection in the mirror has no meaning to me, I often brush my teeth beside the mirror so I don’t have to look through that portal. Sometimes I do, helps when practicing expressions. The correct expressions are important when you need to get people to do what you want them to do.
I have been in the hospital twice in 5 weeks. They were all kind, very caring… They run to put out the fire with full hearts and douse the flames with drugs. A week long bucket brigade that ends with my discharge and ticket back to the streets of Northampton.
I want to die but I am not allowed to. How is it that a man who loves his children so very very much can resent them for keeping him alive?
I need a coffee and my morning meds, bye.

If you are willing to be part of an email support network for Steven, please leave a comment and I will pass your email address onto him. (There is no need to specify your address publicly; I will see it from inside WordPress when you leave your post.) I want Steven to know he is part of a caring community that spans oceans and continents, and that he is not alone in his time of difficulty.

© 2011 by Rachel Cohen-Rottenberg

As a child, I was gifted at music and intellectually precocious. I was told that I could succeed at anything I wanted to do. The sky was the limit! I was going to grow up to Be Somebody! And when I say Be Somebody, I mean in a completely and utterly conventional sense. Doors were going to open. I was going to be welcomed into a prestigious position in which I would Do Important Things. In other words, I was going to be in the center of the known world.

On the other hand, I have always felt myself to be on the margins. I don’t mean on the socio-economic margins, although that has sometimes been the case. I mean on the karmic margins — which is to say, on the margins in nearly every situation I have ever entered. Even in my original family, in which I was The Child Destined to Do Great Things, in which people kvelled over me as though it were their life’s work, I was on the margins. I just didn’t fit. Even when I was standing next to them, I watched my family members over there, as though they were in the center of the room, relating to one another, and I was on the outside. For a long time, I was sure that I must have been adopted, because there was no one in the family who reminded me of myself at all.

I felt myself on the margins in high school, and I felt myself on the margins at work, and the feeling rarely left me, even when I was trying so hard to be in the center of it all. Especially when I was trying so hard to be in the center of it all. The only time I didn’t feel on the margins was when I happened to cross paths for awhile with other people on the margins. Then the world felt like home.

Recently, I’ve been finding myself in a state of Great Regret over some decisions I made in my early life. More specifically, it’s that self who was Destined to Do Great Things that is the source of this Great Regret. I’ve been kicking myself over my decision to leave Princeton after my sophomore year, and my decision to leave Berkeley without my PhD. I keep thinking to myself: How hard would it have been to stick it out at Princeton for two more years? I’d have a Princeton diploma! Think of the prestige! And I could have finished that PhD program, even though I didn’t want to become an academic. I’d have a PhD! More prestige! What the hell was I thinking? How could I have been so short-sighted?

All that comes from one version of myself. What’s kicking it all up right now is the other version of myself, the one who knows that I’m on the margins. Here I am, doing my work on autism and empathy on behalf of my dear and beloved autistic people, and wishing like hell that I had some kind of prestige to go with all my critical thought, because it would help the cause. Having spent a lot of time in academia, I’m painfully aware of the pecking order, and I’m keenly aware of where my master’s degree in English puts me.

Was I glad to have the experience of studying for my first master’s degree? Yes. Am I glad to have the experience of studying for my second master’s degree? Yes. But this time around, I am not doing it for the sake of “moving up” in the world, but for the sake of the work I want to bring to the world.

Of course, nothing would ever be enough to get me to a place of privilege in the world as presently constituted. Not as a disabled person. Not as an autistic person. Unless I help to work against hierarchies of power and privilege in the world, I will always be Other. Unless I help the world to move beyond a deficit-driven model of human beings, I will never be Enough — not if I have six PhDs and six fancy titles to go with them. For me, that’s the struggle of being disabled — not the condition itself, but the knowledge that in the eyes of the conventional world, I am less-than, whatever my intelligence and whatever my accomplishments.

In some way, I have always known all of these things, even before I ever imagined that the word “disabled” would adhere to me. I have always felt it. Perhaps it’s that I was never normal. I was always different. I was not different because of what I wore or what I said, though sometimes, those were the expressions of my difference. I could always change what I wore or what I said, although sometimes at great personal cost. But my difference went beyond that. I was different to my core, in a completely unchangeable way, in a society in which deviation from the norm is considered shameful and must be corrected at all costs. For all my passing, I’ve always known that something in the core of me was not acceptable in the eyes of the world, and that it would never change.

And now I know that it’s called being disabled.

All my life, I’ve been standing at the same crossroads, over and over. Do I chase that dream of being in the center? Or do I throw in my lot with other marginalized people? I’ve tried chasing the dream, over and over, and I always end up leaving it behind: I left Princeton, I left Berkeley, I left my high-paying job to homeschool my daughter. But I never acknowledge the other path, because the idea of stepping over to the path that leads to the margins has always felt too frightening to me. There is so much vulnerability there, so much potential for pain, and injustice, and derision, and disrespect, and mistreatment. I crave that acceptance, that conventional mark of approval, that illusion of safety that comes from wanting to Be Somebody, and I’ve resisted all my life the idea that to Be Somebody, in the way that the world understands it, may not be why I was put on this earth.

Lately, I’ve realized that I can’t keep circling around to the same crossroads, over and over. I have to choose the path that leads to the margins because, in truth, it has already chosen me, and it’s exhausting to continue to flee it. I have to throw in my lot with other marginalized people. I cannot continue to give power to the idea that one’s ability to be heard, and respected, and understood should depend upon a diploma, or the trappings of normalcy, or the acceptance of convention — not when most marginalized people will never have a diploma, will never pass for normal, will never live conventional lives, will never be granted prestige or the trappings of power, but will always have to fight just to be heard, just to eat, just to live in a safe place.

Many of us can pass well enough to have all those things, but as Rosemarie Garland-Thomson writes, passing for normal with an invisible disability is a “seductive but psychically estranging access to privilege” that has serious personal and social implications:

“Some of my friends, for example, have measured their regard for me by saying, ‘But I don’t think of you as disabled.’ What they point to in such a compliment is the contradiction they find between their perception of me as a valuable, capable, lovable person and the cultural figure of the disabled person whom they take to be precisely my opposite: worthless, incapable, and unlovable… The trouble with such statements is that they leave intact, without challenge, the oppressive stereotypes that permit, among other things, the unexamined use of disability terms such as crippled, lame, dumb, idiot, moron as verbal gestures of derision.

…

[B]y disavowing disability identity, many of us learned to save ourselves from devaluation by a complicity that perpetuates oppressive notions about ostensibly real disabled people. Thus, together we help make the alternately menacing and pathetic cultural figures who rattle tin cups or rave on street corners ones we with impairments often flee from more surely than those who imagine themselves as nondisabled.” (22)

All my life, the man rattling the tin cup has been one of my people. I’ve known it. I’ve fled from that knowledge, and I’ve fled from that man, but I’ve known it. The suffering of others is a tear in the fabric of the universe, and I am part of that fabric, and I’ve known it for a long, long time. I’ve known it since the day I sat in the synagogue at the age of ten, and watched a film of real Nazis shooting real women and children at the edge of a ditch, and had a stark realization: Those women and children, standing on the margin of that pit, getting ready to feel the bullets tearing through their bodies, were not people to pity and to forget. I was one of them. I was on the edge of that ditch with them — terrified and grief-stricken, but one of them.

I have always known who my people are, and I’ve fled from them, afraid that if I threw in my lot with them, I’d have to give up this mad craving for acceptance, for approval, for the mythic safety of “normalcy,” for the dream of what people once led me to believe was my destiny. And that fear has cost me dearly — physically, mentally, ethically, and spiritually. I’m only beginning to understand just how dearly.

It’s an awful thing to be at war with oneself. It’s an awful thing to keep fleeing and arriving at the same place, over and over. I can’t do it anymore. I won’t do it anymore.

There is no shame in being on the margins. There is only shame in believing that I am too important to be there.

There is no shame in being told that I am broken, that I am lacking, that I will never be enough. There is only shame in believing it.

There is no shame in being ridiculed, or patronized, or dismissed. There is only shame in being the one who ridicules, or patronizes, or dismisses.

There is no shame in being misunderstood. There is only shame in refusing to understand.

There is no shame in being an ordinary person speaking truth to power. There is only shame in keeping silent and forgetting that ordinary people are the ones who heal this world.

No matter what happens to me in this life, I will always find my people. All I have to do is to reach out my hand.

Sources

Garland-Thomson, Rosemarie. “Integrating Disability, Transforming Feminist Theory.” Feminist Formations 14, no. 3 (Fall 2002): 1-32. http://mtw160-150.ippl.jhu.edu/login?uri=/journals/nwsa_journal/v014/14.3garland-thomson.pdf.

© 2011 by Rachel Cohen-Rottenberg

Why do you stay in the marriage?

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

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

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

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

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

Because I love her.

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

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

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

Because it works for me.

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

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

© 2011 by Rachel Cohen-Rottenberg

http://thingsorganizedneatly.tumblr.com/

Heaven!

As many of you know, engaging the whole issue of autism and empathy can be very painful. I see the unexamined assumptions. I see the rampant generalizing. I feel the impact of the dehumanizing words. I feel the anger and sadness as I face how deeply entrenched the stereotypes are. And I see the potential for harm.

Many people have told me that they can hardly bear to look at the sources that I analyze and write about in detail. I understand why you feel that way, believe me. It is hard, hard work. As I prepare to enter more deeply into the work in my graduate program, I am feeling more and more apprehensive about delving into the research and critiquing it. My apprehension has been looming very large lately, and I’ve been trying to understand why it’s there. What I’ve realized is that my apprehension is not only about the content of what I’ll be reading, but also about feeling that I am fighting this fight on my own.

Don’t get me wrong: I know, intellectually, that I am not alone. I know how many people support this work. I know how many people share my sadness and anger. I know how many people value what I’m doing. I deeply appreciate all the many supportive comments and messages I’ve received. Every single one of them has great meaning for me.

But what I’m lacking is a support network — a place where I can go and get support when I’m feeling burdened, or upset, or just plain depressed at what I’m seeing. I’ve been thinking about what that might look like, and I’ve come up with two ideas.

First, with the full support of my professors, I’ve decided to immerse myself in disability theory and disability studies before reading any more research into autism and empathy, theory of mind, and other related topics. I have to put together a working framework with which to analyze what I’m looking at, and I need to feel myself part of a larger community of people who have grappled with all the same issues I’m grappling with — issues of dehumanization, exclusion, and power. When it comes down to it, although the details differ, all disabled people who write about disability issues have to struggle with a social context that has historically sought to exclude them. As I’ve begun reading the work of disability theorists and writers, I’ve begun to see patterns emerging that give me new ways of looking at own work. I’m hoping that if I immerse myself enough, I’ll emerge with a framework that will allow me to understand the larger social and historical forces at work, and that this framework will provide a structure into which I can channel my sadness, my anger, my frustration, and my passion for change.

Second — and this is where you all come in — I want to set up a network of people I can email when I’m feeling up against it. Sometimes, I’ll be able to channel my feelings into a theoretical framework, but at other times, I will just need to process my feelings and get support. I’ve got some friends in town who help me do that, but I want to feel myself part of a much larger community of support, because this work is so much bigger than just a few of us.

I’m aware that I’m doing a lot of heavy lifting on these issues, and by saying that, I’m not complaining about it. I chose to do this work, and it’s my passion, and I don’t feel forced into it by anyone else’s expectations but my own. But heavy lifting is heavy lifting, and at times, I need help carrying the burden. I think it’s wise to ask for that support at the outset, because if I don’t, I risk running on fumes at some point, and that’s not a place I want to go. I want to continue to be filled with strength and energy and power for this work, not arrive at a place in which my resources for it are depleted.

Fighting dehumanization is too important. I am in this fight for the long haul, and I want it to remain a sustainable one. To do that, I need to reach out. So, if you’d be interested in being on a list of people I can email for support when the going gets tough, please leave a comment below or send me an email. And by all means, feel free to drop me a note if you like what I’m doing and it’s meaningful to you. Those kinds of messages mean more to me than any words can say.

© 2011 by Rachel Cohen-Rottenberg