Archive for Community

Please Help an Aspie in Difficulty

December 24, 2011 Rachel Community

I’ve recently heard from a reader who is going through a difficult time. His name is Steven, and he is a 40-year-old artist with undiagnosed Asperger’s. He is currently homeless and living in shelters (when they’re not full) and in his car (in below freezing weather). As you can imagine, he is feeling very low, and I am hoping that some of you can be an emotional lifeline for him. I would like to put together an email network of people to whom he can reach out for support.

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

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The Path That Chose Me

December 2, 2011 Rachel Community, Marginalization

These past few days, I’ve been realizing that, from the time I was small, I’ve lived with an odd kind of bifurcated consciousness about myself. On the one hand, I was The Child Destined to Do Great Things. On the other hand, I have always been on the margins.

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

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Seeking Support

November 17, 2011 Rachel Community, Empathy

It’s taken me awhile to put this post together. I’ve been aware of my need for support for some time, but I hadn’t been sure exactly how to ask for it, or what it might consist of. This post is an attempt to explore the question.

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

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On Disclosure, or Why I Was Quiet on Autistics Speaking Day

November 2, 2011 Rachel Communication, Community, Self-Advocacy

You would think that, at this point, disclosing my autism would be no big deal. After all, anyone can find out I’m autistic by doing a quick Google search on my name, reading my blog, or checking out the titles of my books.

But recently, the issue of disclosure has come up, and I’m finding myself approaching it rather differently than usual.

As many of you know, I’ve recently begun a master’s program in History and Culture at Union Institute and University. The program is entirely online, and for each course, my fellow students and I discuss our work through a discussion forum on the Union website. I’ve been talking about my interest in the autism and empathy issue, about different ways to approach the issue, and about the challenges of reading research papers that, for all of their attempts at neutrality, put autistic people in a painfully dehumanizing light. So I’m making no secret of my interests. But I haven’t yet mentioned the fact that I’m autistic — not even after a fellow classmate told me about her godson who is on the spectrum and her desire to find ways to help and support him. In the past, I’d have run right in and said, “I’m on the spectrum. You might get a lot out of reading my blog. And feel free to ask me any questions you want!” I did refer her to the Autism and Empathy site. And when I did, my professor looked at the site and my blog, and responded very enthusiastically to both. So I’m not hiding, by any means. I’m just not being as blazingly direct as usual.

At first, I thought that it was just disclosure fatigue. After all, I’ve been writing on the subject of autism and disability rights for nearly three years, and I’m feeling rather private right now. And then, of course, fear was rearing its ugly head — fear that if I disclosed my autism, my fellow students would think that I’m an unemotional, unempathetic robot more interested in objects than people. And yes, I could disabuse anyone of that notion by referring them to my blog, or to the Autism and Empathy site, or to my books, or to my husband, or to my daughter, or to my friends, or to my neighbors, or to my employers, or to pretty much anyone who has ever known me, but the stigma that attaches to autism is still there, and I know it. Usually, I am quite pleased to fight against that stigma, but in the context of my online courses, I’ve found myself strangely hesitant.

Disclosure fatigue and stigma have definitely entered into my holding back. But something else is in play. It’s the feeling that I just do not want to run in and disclose my autism right away unless I consciously decide it’s necessary. It doesn’t mean I won’t disclose it. It just means that I don’t want to lead with it.

I think what I’m going through is very much akin to what my gay friends have mentioned regarding coming out. At first, a lot of them felt that they had to tell everyone up front that they were gay — both to show that they were proud of who they were, and to get any homophobic insanities out of the way. But then they came to handle it differently. Instead of announcing it up front, they just started letting it come up naturally, such as in conversations about partners, or social justice issues, or the like. So instead of leading with, “I’m gay,” they’d just say naturally in conversation things like, “My partner and I went up to the inn this weekend,” or “I started fighting for social justice causes way back when I came out and joined the gay rights movement.” After all, straight people don’t greet every new person with “Hi, I’m straight.” It just becomes apparent.

By the same token, neurotypical people do not show up in discussion forums and immediately announce the nature of their neurology. I don’t see any reason that I should either, unless I determine that it’s necessary, according to my own lights. And so far, I’m finding my new approach quite interesting.

The only really odd thing about holding back is that I’m noticing that my pronoun use is, shall we say, problematic? For instance, when I talk about autistic or otherwise disabled people, I say, “they” rather than “we.” There is a serious cognitive dissonance going on, because I’m basically referring to myself in the third person. I have a feeling that this dissonance alone will drive disclosure, but it will have to happen in its proper context.

So I wasn’t quite ready to participate in Autistics Speaking Day this year. I fully support it, of course, but I was in such a different place in my process that it was difficult to get into the gear of writing something for it. It will be interesting to see how I feel about the whole subject next year.

© 2011 by Rachel Cohen-Rottenberg

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Navigating Competing Worlds: The Elusive Ideal of Normalcy

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

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

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

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

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

Sound familiar, anyone?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I’d love to hear your thoughts.

—

Sources

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

© 2011 by Rachel Cohen-Rottenberg

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A Protest March is Not Dialogue

September 28, 2011 Rachel Communication, Community

I’ve been doing some more thinking about the Self-Advocate/Parent Dialogues on The Thinking Person’s Guide to Autism.

Like many people, I’ve felt frustrated, angry, and saddened by what I’ve watched go on there. And I’m realizing that it’s because, each day, I show up wanting peaceful dialogue, and each day, I find myself in the middle of a protest march that keeps turning into a brawl. It feels exactly like wandering into a demonstration and counter-demonstration in which the police barricades, put in place to keep people from tearing one another apart, keep getting overrun.

Maybe it’s just me (and judging from the events of the past week, I’m beginning to think that it may very well be just me), but there are things that I’ve always expected from a dialogue, and that I’ve always assumed were both necessary and reasonable:

  • Expressions of respect for the other party
  • Listening and responding rather than reacting
  • Speaking with civility, even in the midst of great anger
  • Asking questions that go to the heart of intent
  • Equal time and representation for both sides to express their perspectives
  • Care and concern for individuals across division
  • An ability to acknowledge errors on both sides

But here are the things that I’m seeing in the The Dialogues:

  • Yelling. And I mean yelling that happens IN ALL CAPS because otherwise, MAYBE other people won’t KNOW how WRONG they OBVIOUSLY ARE.
  • People taking their pain out on one another. I see parents doing it because they feel stressed and abandoned and get to do it everywhere else in the autism world, and I see autistics doing it because they feel stressed and abandoned and never get to do it anywhere else in the autism world. On behalf of both parties, it hurts me to watch.
  • Accusations of ill-intent along the lines of “You’re just trying to derail the conversation,” as though accusing someone of derailing the conversation — rather than bringing the conversation back on point — isn’t derailing the conversation.
  • Lots and lots of sentences beginning with “You,” such as “You just refuse to understand” and “You need to park your privilege at the door” and “You have no right to be upset about whatever it is you’re upset about, because it’s irrelevant.”

Anyone here ever try to carry on a relationship in which both parties start every sentence with “you” rather than with “I”? It doesn’t go well. Telling the other person everything he or she has done wrong, over and over, instead of talking about its impact on you and what you want to see change, usually doesn’t get you very far. It’s quite cathartic, but in the end, it damages the relationship, and then there is repair work to do on top of the problems that were there in the first place.

  • People laughing derisively at each other, judging each other, attacking each other, and accusing each other of saying things they never said and meaning things they never meant.
  • People treating one another as walking incarnations of all of life’s injustices, rather than as actual people with feelings and thoughts and tears. It’s easy to take a swipe at an incarnation of life’s injustices. It’s quite a bit more difficult to do it when you realize that a person is standing in front of you.
  • People getting their feelings trampled underfoot on the road to — what? Making life better for all of us? Excellent. But there’s one little problem: I’m not all that interested in creating change with people who think that’s the way to go about it — for the simple reason that I fear for what the world will look like when we get there.
  • People being unable to acknowledge any wrongdoing, either because they’re oppressed and the wrongs done them are so much worse than what they’ve done to others, or because as long as the cause is right, who cares? So, unlike most people who seem to have moved on as though nothing happened, I’m still pissed as hell at what happened to Emily, and I’m still waiting for someone else to sober up and say, “My God, we’re so sorry. You didn’t deserve that.” And I can feel, in my bones, just how irrelevant people seem to think that is. Who cares about Emily when we’re talking about oppression?

I do. It’s not that I think that Emily is still hurting. It’s the failure to take responsibility that concerns me so much. If we can’t engage in self-reflection and mend things that are broken in our community, how can we have a prayer of mending a broken world?

I’m having memories of my days in Berkeley, when I’d go to gatherings about social justice issues, hoping to listen to a few speakers and have a reasoned discussion, only to watch people yell and punch holes in walls and talk about how it wasn’t such a big deal because people were suffering in the world. Yeah, the wall doesn’t suffer, but the people in the room who watch it happen do. It’s scary, it’s intimidating, and it’s not conducive to dialogue.

Now, I can hear the objections to everything I’m saying here: “Well, we’re oppressed. You can’t expect us to be civil and well-spoken about it. There is too much at stake. And besides, we’re angry. And besides, why don’t you talk about what we’re saying rather than about how we’re saying it?”

All I can say is that, in a protest march, or in a diatribe, you have to yell and say what you have to say, however you want to say it. And I share your suffering, and I share your desire to be loud about it, and I want change to happen right now, just as you do. I’m a member of two minority groups that have suffered bitterly for generations upon generations, so I can hardly be accused of not getting it.

But a dialogue involves something very different. A dialogue involves saying things in a way that other people can hear them. This is not an argument from tone. This is a realistic appraisal of how to work around people’s defenses and get them to hear us so that we can make change. We can’t get people to listen to us by telling them that we’re right and they’re wrong, over and over. They’ll either put up their defenses and start beating up on us in the same way, or they’ll go away altogether. Either way, we’ve lost much-needed allies.

When I look at history, I see oppressed people creating change by forming alliances with the majority, and by doing it in a way that takes the moral high ground. The civil rights movement finally had its day because Martin Luther King, Jr. invited white folk to join him in taking that moral high ground. You had people who had watched their loved ones lynched and raped, but they came together, in the spirit of peaceful dialogue and a yearning for justice, with representatives of the privileged class whose members had done the lynching and raping.

That’s what I keep hoping for: that we carry this forward with some discipline, some respect for the perspective of the other, and some trust that we can make change by being the change we want to see. But after the events of the past week, my sense is that we’re a long, long way from there.

© 2011 by Rachel Cohen-Rottenberg

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Impact, Intent, and Dialogue in the Autism Community

September 26, 2011 Rachel Communication, Community

This post discusses an issue arising from the Parent/Self-Advocate Dialogues that began last week on The Thinking Person’s Guide to Autism.

For those who haven’t been following the Dialogues, a rather contentious argument arose about a Twitter exchange between Rob, one of the participants, and Emily, one of the editors, in which it appeared to many people that Emily had ill intent. As it turned out, she did not – quite the contrary – and the ensuing conflict was based on a misintepretation. Given that Twitter does not allow for much in the way of nuance or explanation, a misinterpretation wasn’t all that surprising. Twitter probably wasn’t the best medium in which to attempt a conversation about a serious issue in the first place.

K over at Radical Neurodivergence Speaking has a great post up about the whole incident, with a very good discussion of why the larger social/emotional/historical context in which it happened made misinterpretation almost inevitable. If you aren’t familiar with the situation and want to have some idea of what the rest of this post is about, take a look at K’s piece.

I originally began my post as a comment on what K had written. But as I wrestled with my feelings about the situation, I began to see larger issues that I want to explore here.

—

In the context of a world in which autistic people are so often rendered invisible, I understand why people interpreted Emily’s words as they did. We’re used to people not listening to us, and when it appeared to be happening again, people drew conclusions based on life experience. I completely understand it, and for anyone who doesn’t, I hope that K’s post makes the reasons clear. From the outset, I did not interpret Emily’s words the way that others did, but I understand why other people arrived at a different conclusion.

That’s not what troubles me.

What troubles me is that, despite Emily being a respected member of the community with an impressive track record on advocacy issues, the rush to judgment about her intentions was so swift. I watched it happen in the comments section to the Dialogues, and I kept wondering when someone was going to say, “You know, given that it’s Emily we’re talking about, we must be missing something. Perhaps we should ask for clarification.” Instead, I saw commenters looking at the Twitter exchange and then drawing very pejorative conclusions about Emily’s intent – that she was attempting to derail dialogue, to silence autistics, to encourage dismissal, and so on – without asking what her intent actually was, and without considering the fact that the conclusions being drawn and her track record were so much at odds.

In the context of dialogue, the failure to ask about intent worries me, because dialogue involves a willingness to ask questions in order to discern intent. Without that, a crucial part of the picture is missing, and dialogue becomes unproductive.

In fact, a failure to ask about intent ultimately discourages dialogue. Because of the pejorative things said about Emily’s intentions, it’s taken me days to post my feelings about the situation. For the first time since I’ve started blogging, I’ve felt inclined to stay silent about my feelings regarding an issue I care about. And if someone like me could feel that way, I can only imagine what people new to the community must have felt while they were watching the whole situation unfold.

As I’ve struggled with speaking to the issue, I’ve been asking myself questions along these somewhat worrisome lines: What will happen if people misread my words as an attack? What will happen if they think I’m dismissing the pain involved for everyone? What if they think I am assigning ill intent to them?

Will they ask me to clarify my intent? Will they try to understand where I’m coming from? Or will they assume ill intent where none exists?

It’s taken me four days to say: I hope they’ll read carefully. I hope they’ll consider who they know me to be. I hope they’ll ask if something is unclear. But I really can’t worry about that.

—

I know that this whole debacle came out of the pain that so many of us carry, and out of the injustices we’ve suffered. I do. When people read words that appear to be dismissive – even if they are in no way intended to be dismissive – the impact is going to be profound. That reality has to be part of these conversations. And what also needs to be part of these conversations is an understanding that it’s often very ill-advised to draw a conclusion about intent based on impact, especially in a dialogue. When that conclusion is wrong, it can cause a lot of hurt. As a community, we have a responsibility not just to explain why these misinterpretations happen, but also to acknowledge the impact on the person who was misinterpreted.

Emily had people saying some pretty awful things about her thoughts and intentions last week. She’d have to be made of teflon not to feel hurt while it was happening. So while it’s crucial that we talk about the impact of power and privilege and context and silencing and dismissal on us, it’s also crucial that we acknowledge what happens to individuals at the epicenter of these blow-ups, and about the ways in which these kinds of things can fracture a community and discourage dialogue.

So I’m doing now what I should have done in the Dialogues thread last week: I’m speaking up. I hope that people will understand that I’m doing so because I care about the future of dialogue in our community, and because I care about our community being a safe space. If this sort of thing can happen to Emily, it can happen to any one of us.

© 2011 by Rachel Cohen-Rottenberg

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On Language and the Spectrum of Experience

July 20, 2011 Rachel Belonging, Community, Marginalization, Myths about Autism

I tend to tread very carefully in the general discourse about autism, because stereotypes and overgeneralizations abound. Given the wide nature of the autism spectrum, and the varied experiences of autistics and family members, general pronouncements about the nature of autism, as opposed to particular statements about personal autism experiences, generally leave me very frustrated and depressed.

In response to living in a world in which people seem to argue endlessly about which autism is the “real” autism, I’ve made a commitment to reading a wide range of personal narratives. It keeps me from feeling frustrated by the constant generalizing, and it helps me to keep a broad perspective about the wide variety of experience in the world of autism and disability. I am constantly reminded that my experience of autism and disability is not everyone’s experience of autism and disability.

Unfortunately, I recently stumbled across an article that generalizes so dramatically from the specific that it’s taken me over a week to collect myself and respond. The article was written by a woman in my community, Prudence Baird, who has a 16-year-old son with Asperger’s. My husband knows Ms. Baird and has spoken highly of her; I have never met her personally, but she and I are both involved with the local independent weekly. Eager to know more about her, I decided to go to a website for women writers that she helps to run, just to see what sorts of things she writes about.

That’s where I found her article, Naked Motherhood. It discusses autism in highly charged and pejorative terms. (It also discusses the story of Jeremy Fraser, a story about which I have very strong feelings. In the interest of limiting the length of this piece, I’m not going to address those feelings here.)

The terms that Ms. Baird uses to describe autism wouldn’t be a problem for me if she were speaking only to her own experience; as I see it, how she experiences her life and frames her responses to it aren’t open to argument or judgment. However, she takes a giant leap from her experience to very generalized statements about autism that I consider to be highly prejudicial and potentially very destructive.

I want to make it very clear from the outset that I do not believe that Ms. Baird had any ill intent. I do not think she meant to do harm, or that she harbors ill-will toward autistic people, or that she doesn’t see the positive aspects of autism. My purpose is to discuss the impact of her words on me, and to speak to the fact that her words have the potential to do harm, regardless of intent.

Ms. Baird begins her piece with a personal anecdote in which her son is woken from sleep and becomes irate and aggressive:

The popsicle stick-thin figure in rumpled pajamas who is my 16-year-old son stands in the darkened corridor in a fighter’s stance, small white hands clenched into fists. His face, lit by a shaft of light from the laundry room, is contorted with rage at being roused from his slumber—probably by me shutting the dryer door.

…

“Honey, you’re half asleep; go back to bed.” A light touch Casey’s shoulder. Mistake. A tiny fist flies—I duck; a torrent of abuse follows.

“Just shut-up!” yells older brother wrenching open his bedroom door. Then, “Mah-ahm, you don’t ever punish him; he thinks he can get away with this.”

Casey tries to scramble past me, “Fucker! I’ll kill you!” I seize a second jab in mid-air, gently guiding the wrist to Casey’s side as I hold him firmly by the elastic of his P.J. pants.

“It’s late,” I soothe, drawing closed my older son’s bedroom door. “Let’s get you a cup of warm milk.”

But there will be no soothing tonight. The door to Casey’s room slams, and for emphasis, opens and slams harder. I count with eyes closed. Finally, his bed
creaks.

I very much admire that Ms. Baird responds gently and mindfully to her son. As far as I’m concerned, that’s the right response. No argument there. However, I find myself apprehensive about the fact that she says nothing about what her autistic son is going through — why he’s upset at being awakened, why he has such difficulty self-regulating, why he is in so much pain — but concentrates exclusively on her experience and on the impact on her elder son:

I pivot, open the bedroom door of my eldest son who is sprawling on his bed wearing drawstring shorts and Borat T-shirt. His laptop is open to what I hope is homework. He glances at me from under brows stitched together with almost two decades of frustration; a look too jaded for his 18 years.

I well understand that siblings of autistic kids have their own issues, and I am not at all suggesting that Ms. Baird talk about only the subjective experience of her autistic child. I am asking only that everyone’s experience have a place in the narrative.

I worry when I read an obviously well-honed piece, written for public consumption, that does not include any words about the subjective experience of the autistic young man who is at the center of the discussion. Yes, autism can be hard on a family — and it’s also very hard on the person with the condition. I have read innumerable stories about the impact of autism on the family that fail to even guess at the experience of autistic people. Each time I do, I have the same uneasy feeling that I have reading Ms. Baird’s piece — that others will see autistic people merely as burdens and sources of pain, rather than as full-blooded human beings in need of the same empathy and respect as anyone else.

As an autistic person, my heart sinks when read these sorts of narratives. In a world in which the voices of autistic people are so relentlessly ignored, every iteration is another moment of invisibility.

After all, when people read narrative after narrative in which autistics are discussed only with reference to the difficulties of others, the impact on the ways in which people view and treat autistic people can be profound. Many of us have had the disheartening experience of disclosing our diagnoses, only to find that people immediately feel sorry for our family members for having to live with us — even when our family members take great delight in us and do not feel sorry for themselves in the least.

For example, when I was first diagnosed and going through a difficult time, one of my extended family members said to my husband, “Take care of yourself. Sometimes, you know, the caregiver suffers worse than the patient.” I was aghast. Fortunately, my husband clarified that he is not a caregiver, that he is not suffering, and that I am not a patient — that, in fact, he is my husband, I am his wife, and we are very happy together, just as we were before the diagnosis.

Such are the sources of my unease — an unease that turns to outright pain with the next sentence:

“This is autism,” I whisper. “Please. Punishing isn’t the answer.”

As I said earlier, I admire Ms. Baird’s approach to her son; that isn’t what pains me. And I am willing to guess that, in her household, “This is autism” is a shorthand for “This is your brother’s experience of autism.” Unfortunately, because the article was published on the Internet, many people will have no idea of what those words might mean in the context of her family. Many people will only see the words “This is autism” and believe that all autistic people melt down after being awakened, take a swing at family members, and threaten them with bodily harm.

The pain that I feel about it is particularly intense because the person who wrote those words lives in my community, where my Asperger’s is well-known. I wonder whether people who read these words will look at me now and think, “Well, she certainly holds it together well when she’s sitting on her porch, but she must be hell-on-wheels inside her house. The next time I stop by to admire her flowers, I’d better keep my distance and be careful not to set her off.”

They would have absolutely no reason to see me in that light. None at all. But I know that there are people who will see me through the lens of that distortion because, once upon a time, when the only thing I knew about autism were dreadful stereotypes, I thought that all autistic people were scary, too.

My concerns on this score only increase when Ms. Baird launches into some of the most fear-inducing words about autism that I have ever read:

Autism is where marriages and parenting partnerships come to die on the rocks of exhaustion, despair and blind self-interest. Autism wears down families, severs familial bonds with sharp and bitter recriminations, blame and guilt.

I absolutely cannot tolerate it when people indulge in these kinds of generalizations about a condition that exists on a very, very wide spectrum. I understand and have compassion for Ms. Baird’s experience, but it is her experience. Yes, it is an experience shared by other families, but it is by no means the universal experience of autism.

Like Ms. Baird’s son, I have Asperger’s. Have my marriage and my parenting partnership died “on the rocks of exhaustion, despair, and blind self-interest”? No. Has my autism severed “familial bonds”? No. Has my autism worn down my family with “recriminations, blame, and guilt”? No. Quite the contrary, in fact.

My neurotypical husband tells me early and often how happy he is that we found each other, and how much I help to ground him and to help him feel at home in the world. My neurotypical 18-year-old daughter tells me that I’m the best mother she could ever ask for, because I listen to her, give her unconditional support, and treat her with respect and kindness. My friends find me to be a trustworthy and sensitive person. Like most autistic people, I am neither aggressive nor violent; in fact, it gives me physical pain just to think about people being violent toward one another.

In my experience, we autistics are as different from one another as the members of any other group. I have worked with autistic teens who are quite aggressive; I have also worked with autistic teens who are among the most gentle, kind, and sensitive people I’ve ever met. And, from my association with autism parents, I know that autism families have experiences that are all over the map. I also know that, when they have similar experiences, they can respond to them in a very wide variety of ways.

Consider the following:

Many autism parents have not had their marriages and their families torn asunder. In fact, a 2010 study showed that, in the United States, the divorce rate for parents of autistic children is 36%, while the divorce rate for parents of typical children is 35%.

Many autism parents have found that raising their autistic children has strengthened their families, and has made them stronger and more nurturing people.

Many autism parents feel that if family members and friends distance themselves, it is not the fault of the autism. It is the fault of the people who refuse to make room in their lives and in their hearts for their children.

Many autism parents are living fulfilled lives with autistic children whom they enjoy. Are their lives difficult? Of course. Are they happy? Much of the time, yes.

In short: Many autism parents, after the initial shock of the diagnosis and the steep learning curve that it entails, do not experience autism as a disaster that has befallen them. Consider the words of K, the mother of a son with autism and apraxia, who blogs at Floortime Lite Mama:

I realized that the most important story that I will ever tell, is the one I tell myself.

About me and my life.

And that I am not just the central character of my life

But also the author

Its most important audience

And the narrator

And so the story I started to write, has become a story of gifts and gratitude and love

And not a story of loss and fear and guilt

And I see my child as different, even gifted

And I stopped seeing him as broken

I have come to see the difficulties of my life

But am still deeply aware of its essential sweetness

And I find that I am not living in a sad story

Or a make-the-most story

Or even a second-best story

And that the story that began so promisingly with “once upon a time” does end on a “happily ever after”

Because this is my story

And that is how I write.

These words reflect K’s experiences and how she has framed them. I am not at all suggesting that everyone has the same experiences, or that all autism experiences could, by any stretch of the imagination, be framed in this way. I am simply pointing out how varied our experiences and our responses are. If Ms. Baird had simply spoken in the first person, about her own experiences, I wouldn’t have a problem. Not at all. If she finds her life as an autism parent unbearably difficult, I respect the voice of her experience, and I respect her right to speak honestly about it.

But from my perspective, drawing conclusions about an entire group of people based on a subset of experience is not helpful, to say the least. It’s nothing less than stereotyping. And stereotyping of any group, whether based on race, class, religion, sexual orientation, or disability has serious consequences for the ways in which people are treated at school, at work, and in the community.

Unfortunately, the article continues on in the same vein. I hardly have the words to describe my response to the next paragraph:

Autism makes no sense; there are no navigational tools or comfortable rest stops along the path families must traverse on their way towards the inevitable—when they must blindly entrust their disabled loved ones to the care of others when they themselves are spent, the marrow of their bones turned to dust, and all their loving ministrations poured out onto the dry sand of life’s injustice. In the final analysis, the only real measure of the energy expended is the significant shortening of the mother’s lifespan and the distance the other family members put between themselves and the pain that just won’t go away.

It’s taken me awhile to untangle all the reasons that I find these words so deeply offensive. I will begin by pointing out the obvious fact that autism does not exist separately from human beings. So when people talk about autism in such pejorative terms, they are not talking about a disembodied abstraction.

I am not arguing whether autism is intrinsic to the person or a condition that can be separated from the person. I’m not going to generalize about the lives of millions of people. Arguments on that point tend to be fruitless, because how people render identity is very complex and very personal. I only know how it is for me — I consider autism intrinsic to who I am — but how it is for me is not the issue here.

What I want to point out is the simple fact that autism is always manifested by human beings. In the final analysis, when people talk about their experience of autism, they are talking about their experience of people with autism. And when they make sweeping, generalized, unsubstantiated claims that autism significantly shortens the lifespans of parents and tears families apart, autistic people become stigmatized by association.

Please understand: I’ve got a condition that is already poorly understand and highly stigmatized, and sometimes, all I really want in life is for the rhetoric to become more nuanced, not more strident. All I really want is for people to be able to see me as a human being, without stereotypes clouding their judgment. Because as difficult as it is to have autism, it’s even more difficult to go out into my community as an openly autistic person with this sort of language flying around. And for a great many people I know, it makes it impossible to come out of the closet at all.

In the past, I have found myself very isolated and lonely because I’ve been afraid that other people will believe the stereotypes about autistic people. It’s been terribly painful to go out into the world being my friendly self, eager to help and to be part of my community, only to feel the energy shift in very, very clear ways when I disclose my autism.

Does it happen all the time? Thank God, it doesn’t. I have found many people who take me as I am and do not rely on stereotypes. Sometimes, they even ask me about my experience of autism and how it manifests in me. For my recent job interview, the parents of the little guy for whom I am now a caregiver did just that. But when I applied for the position and disclosed my Asperger’s, I was afraid that the stereotypes would precede me and that I wouldn’t even be considered for the job.

I shouldn’t have to live with that kind of fear. No one should. And one of the ways to create a world in which no autistic person needs to feel that fear is to stop engaging in generalized pronouncements, for good or for ill, about what autism is.

I honor people for whom autism is a gift, and I feel tremendous pain for people for whom it is a curse. But a great many of us tread the vast grey area between the two poles. All across the spectrum of experience, we all need to be heard.

© 2011 by Rachel Cohen-Rottenberg

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Disorder in Society, Disorder in Self

May 23, 2011 Rachel Communication, Community, Disabilities, Doctors

Some years ago, I took a two-year training course in Jewish shamanic healing. I came away understanding a great deal about the many ways in which ancient Jewish culture was similar to many other indigenous cultures, especially regarding the role of the healer, and the importance of ritual in maintaining the health of the individual and the society.

Ever since that training, I’ve become very interested in how various indigenous cultures view illness and healing, mainly as a way to understand our own culture’s attitudes toward sickness and health. So when I ran across the following in Robert Murphy’s The Body Silent, I began to think about the ways in which it illuminates the autism discourse:

“Among the Mundurucu, and many other South American Indian societies, the most serious threats to health are believed to arise from violations of the social order, specifically from the activities of malevolent and alienated individuals, people who, say the Mundurucu, ‘are angry at everybody.’ Most diseases, the Mundurucu believe, are caused by evil shamans who manufacture supernaturally charged objects, called caushi, that enter a person’s body and cause illness…

Just like the invisible malignant objects he manufactures, the Mundurucu sorcerer is thought to operate covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering. Killing the accused restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person. The good shaman brings back life and normal function to the body and community; the evil shaman creates death and disorder — which are really the same thing.” (Murphy, 30-32)

One of the images that struck me right away was that of an outside force entering the body and rendering the individual ill. In the mainstream discourse, autism is sometimes imagined to be the result of a foreign substance being introduced into the body by way of vaccines, environmental toxins, or food additives. At other times, as in the infamous Ransom Notes campaign, autism becomes the outside invader itself.

In both cases, the seemingly inevitable corollary is that autism is a condition separate from the person. If the autism were removed, the narrative goes, the formerly autistic person would be well, normal, and whole. Thus, despite the vast diversity of the autism spectrum, despite the dozens of possible genetic markers for autism, and despite the fact that autism is a complex neurological condition, most people speak of autism as though it were a single entity that could be safely excised.

But where our own culture diverges from the indigenous view is the degree to which the “cure” is focused wholly on changing the person, rather than the social context in which the person lives and breathes. In cure circles, there is very little talk about changing the disorder in society in order to heal the individual.

The only exception comes in the form of the vaccines-cause-autism contingent, whose members believe that keeping people from introducing vaccines into their children will stop the “autism epidemic.” Just as the Mundurucu view the sorcerer as a malevolent entity who operates “covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering,” many who believe that vaccines cause autism view the pharmaceutical companies, the vaccine manufacturers, and the federal government as co-conspirators in a plot to render the American public ill, all the while going about their business looking as respectable as can be.

Of course, the anti-vaccine contingent does not help anyone become better. In fact, they only introduce more illness into communities by lowering herd immunity through their anti-vaccination efforts. In trying to heal disorder, they only create more of it.

As for the rest? Those who believe that autism is caused by environmental agents, rather than by genetics, show little to no interest in stopping the alleged cause of the autism. If you believe that pesticides cause autism, shouldn’t you be working against the use of pesticides? If you believe that food additives cause autism, shouldn’t you be working against the use of food additives? And some people are. But far more people devote all of their attention to altering or curing the autistic person, despite the fact the autistic person, in this scenario, is simply the canary in the coal mine. It’s as though, instead of working on better conditions to keep miners from dying of the methane poisoning that killed the canary, everyone involved decided to re-engineer the human body to tolerate high levels of methane. In that kind of scenario, the human body becomes the source of the disorder, and no one need alter the larger environment.

I read a comment recently on another blog that spoke very directly to this idea. In writing of the necessity for a cure for autism, the commenter said:

“The world isn’t going to get any less bright, less loud, less crowded, or less dependent on the need to communicate in our children’s lifetimes no matter how much we may wish it; and no matter how wrong it is, funding for a generation of children needing lifetime assistance will not be forthcoming.”

I found this comment quite interesting, because it clarifies so succinctly the impact of social disorder on autistic people while eschewing the necessity for healing the disorder in the body politic. The society we live in is not only very bright, very loud, very crowded, and very biased toward verbal communication; it is also a society in which humane, compassionate, lifetime care for severely autistic people is nonexistent. The commenter’s solution is to find a cure. He has wholly given up on the idea of changing the world around him, and he puts the necessity for change squarely on the autistic individual.

I think it’s apparent to most of us who have reached mid-life that the world has become quite a bit more disordered than it was when we were children. I remember my father limiting our TV watching; these days, you can hardly go into a restaurant or a waiting room without a television on. I remember a world of books and LPs; these days, there are iPods, computers, and all manner of technology that keeps us bombarded by visual and auditory stimulation. I remember when you weren’t supposed to play your music too loudly, so as not to inconvenience other people; these days, I hear music blaring out of people’s homes and cars on a regular basis. I remember when you could actually read the credits after a movie because they went by slowly enough for the average human to parse; these days, the text on the screen flies by so quickly that you have to click the pause button just to read it. I remember when classrooms were orderly and quiet; these days, in far too many places, they are loud and chaotic.

All of these factors mean that those of us who flew under the radar 50 years ago could certainly never do so now. It’s not our autism that has changed. It’s the environment. And yet, very few people talk about the environment in any thorough-going way. Yes, there are special ed classrooms, and some autism-friendly movie events, but there is a huge difference between providing separate venues for autistic people and addressing the disorder in the larger society that renders us disabled. Clearly, not all the disabling features of autism can be solved by re-ordering the environment. As one autism mom said to me recently, no accommodations can keep the world from being one in which bees buzz, babies cry, and dogs run — all of which are very painful to her autistic son. But there is much in the environment that can be changed so as to render the world less aversive and disabling to autistic people.

Few people want to talk about that kind of change because, frankly, most people have the privilege of accepting society just as it is; and those who see the enormity of the problem feel powerless to change it. So, instead of the social order changing, it’s individuals who must change. From what I have experienced, putting this burden on the individual is a core feature of the mental health profession, which largely sees difficulties like depression and anxiety as personal problems rather than social ones. Very few therapists are willing to engage the question of the ways in which skyrocketing levels of depression and anxiety have to do with the cold, lonely, stressful, alienating nature of American society. Instead, the solution is almost always to talk it out and take a pill.

After many years in recovery as an abuse survivor, and now as a late-diagnosed autistic, I’ve come to realize that American culture thrives on this individual illness paradigm. Everything is a disorder in the individual. If you’re depressed because you’re disabled and feeling isolated, you have a mood disorder. I actually had my last therapist tell me so. I said to him something along the lines of, “Wait a minute. I’m dealing with a disability in mid-life, in a world that is set up to exclude me more often than not. How does that translate to a mood disorder? Aren’t I having a perfectly normal response to the gravity of the situation?” He just kept telling me that it was my problem.

In the final analysis, it’s the person diagnosed as “disordered” who ends up in the position of the Mundurucu sorcerer and becomes seen as the source of social disorder. Disabled children are considered a “drain” on the school system. Disabled adults are considered “a burden” on society. Autistic people are called unempathetic, rigid, black-and-white thinkers in a society in which most political discourse is inhuman, inflexible, and polarized. People with mental illness are objects of fear and derision. The list goes on and on, the prevailing mythology being that if all these people could simply be cured — or just plain disappear — normality would reign, fear would be banished, and all would be well in the body politic.

In the popular imagination, we disabled people end up not in the position of the victim of an evil sorcerer, but in the position of the evil sorcerer himself. In the minds of so many, to cure a disabled person — or to render the disabled person invisible — “restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person.” The larger society becomes the good shaman, “who brings back life and normal function to the body and community.” The individuals labelled “ill” become the evil shaman, who “creates death and disorder.”

And yet, unsurprisingly, no one is healed. We simply end up creating a society of alienated individuals who, as the Mundurucu say, “are angry at everybody.”

© 2011 by Rachel Cohen-Rottenberg

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Neurodiversity, Grief, and the Normal Minority

May 18, 2011 Rachel Ableism, Community, Disabilities, Friendship, Loneliness, Marginalization, Modes of Thought, Neurodiversity, Privilege

“The worlds created by the human imagination are far more coherent and structured than the real social systems in which we live, and the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on. We take these conventional views of our social system as matter-of-fact, true representations of social reality, but they are socially constructed realities, human artifices whose purpose is to perpetuate society, not clarify it.”

— Robert Murphy, The Body Silent, page 30

I’ve been having a discussion lately with an email correspondent who was mentored by Robert Murphy, and who is himself disabled. He asked me about my feelings concerning the neurodiversity movement, and his questions gave me a chance to further understand the complicated nature of grief and disability. Some of my thoughts in this piece come directly from my portion of our emails, and others reflect the places that my thinking has gone in the midst of our ongoing discussion.

I want to be clear that I agree with many of the core tenets of the neurodiversity movement, which I consider to be no different than the core tenets of the disability rights movement, or any other human rights movement — that all people deserve respect and safety, that all people have the right to be front-and-center in conversations that affect them, that personhood should not be defined by an arbitrary standard of normal, and that there are many ways of being, learning, thinking, and perceiving. However, I no longer identify myself with the movement, in part because I saw how easily I was beginning to slip into polarizing positions that I now consider untenable — such as the absolute insistence that autism is so essential to the person that, by curing the autism, you want to get rid of the person.

I can understand that position; it very aptly describes how I feel about myself and the way in which autism is woven into the fabric of who I am. I personally don’t wish to be cured; were you to take away the autism, I would be someone else, and I do not wish to be someone else. What I wish for most fervently is to feel welcomed as an equal, just as I am. However, these feelings derive from my personal experience. There are a lot of different manifestations of autism; some people do not feel especially happy with being autistic, and some autistic people would like to be cured. Would I prefer that all autistic people be happy just as they are? Sure, but I don’t have to live in their bodies. I just have to live in mine.

And then, of course, most able-bodied parents who hear an autism diagnosis begin grasping at straws about how to proceed, because nothing in life has prepared them for going down the road ahead of them. When you combine the fear, uncertainty, doubt, and dread generated about disability in general with the fact that few able-bodied people understand the experience of disability at all, is it any surprise that most parents grasp at the “cure” straw at one time or another?

When you’ve got a parent in this position, responding with “cure the autism, destroy the person” is extremely counterproductive. It only ends up sounding like an indictment. Parents feel pushed up against the wall and criticized, so they stop listening at the very moment that they most need to hear from us.

Of course, there are people seeking a cure who take extreme positions, and who believe that autism is the worst scourge to hit mankind since the Black Death. And there are people who lose themselves in their anger that life didn’t work out according to plan. There is really no talking to people when they’re in that state of mind.

But a lot of people are on the fence about the cure issue, and they’d be open to a conversation if they felt that we respected where they are in their lives.

What’s most lacking in the conversation about a cure, from the neurodiversity perspective, is the acknowledgment that parents of autistic kids go through a grief process. I have to admit that I feel a lot of discomfort when I hear parents talking about grieving their children’s autism; sometimes, I just want to yell, “Are you grieving me? Because I don’t need your grief. I need your respect.” But, whatever my feelings on the matter, it’s essential that the grief process be recognized and respected if we’re to have any kind of constructive conversation at all.

From what I’ve observed, the grief comes from three different sources.

The loss of the idealized normal child
This grief is largely about the parents. I’m not saying that as a judgment at all; in fact, I understand it completely, and I’ve experienced my own version of it when looking at my idealized self. The way that parents hold on to the imagined normal child derives directly from the fact that, in American society, being normal is the most important value. The socially constructed idea of normal exercises a tremendous hold on the imagination. Aspiring to be normal is more important than aspiring to be a great teacher, or a brilliant researcher, or a bringer of peace to a war-torn country. In fact, it is considered to be the prerequisite to doing just about anything else. And that is because anyone who is even minimally aware knows what normal looks like, understands that he or she is supposed to aspire to it and, at one time or another, believes that normal and natural are exactly the same thing.

Of course, they aren’t. Normal is a social construct, first and foremost. In every society, it’s a different creature. In 21st-century America, normal looks something like this:

Walking is normal.
Speaking is normal.
Seeing is normal.
Hearing is normal.
Having white skin is normal.
Being a Christian is normal.
Being heterosexual is normal.
Socializing in large groups is normal.
Having an Anglo-Saxon surname is normal.
Celebrating Christmas is normal.
Speaking English is normal.
Having European ancestors is normal.
Being middle class is normal.
Being educated is normal.
Having children is normal.
Being happy is normal.
Believing in God is normal.

Of course, this list is far from exhaustive; after all, being normal is a very complex business. But if you look carefully at even this very partial list, what becomes clear is that being normal is not normative. Anyone with a characteristic not on that list falls outside the bounds of normal, to a greater or lesser degree. Having several characteristics not on that list pushes one further toward the margins. If you put together all of us who do not fulfill all the criteria, you get the majority of people on this planet.

But the illusion by which we live is that most people are normal. This illusion is a prime example of Murphy’s assertion that “the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on.” When it comes to the myth of normal, those words are especially apt.

And part of what’s “really going on” is that parents of autistic children find themselves dragged, often kicking and screaming, out of the land of normal — a terrain that they had formerly taken entirely for granted. This phenomenon leads to the second source of grief.

Leaving behind one’s own normality
Having an autistic child means that an able-bodied parent can no longer lay claim to being normal. I don’t care if that autistic child grows up to win the Nobel Prize, marry the President’s daughter, and buy a retirement home in the Swiss Alps; the minute a parent gets that autism diagnosis, normal is over. All done. Kaput. Never to return.

You know those angels with the flaming swords, guarding the path to the garden of Eden? They’re the same ones standing between able-bodied autism parents and their formerly normal selves.

You hang out with marginalized people and, sooner or later, you get marginalized. Anyone who has ever been in a public school knows this to be the case. Parents, remember the kids you didn’t want to hang out with, the ones you avoided like the plague, the ones you secretly (or not so secretly) made fun of, the ones by whom you didn’t want to be tainted by association?

Now your kid is one of them — which makes you one of them.

This inconvenient truth is what leads people to scream their heads off about how it must be the vaccines that cause autism, or the environmental toxins, or anything other than genetics because — gah! — if autism is genetic, that must mean that you’re one of us.

I’ll let you in on a little secret: You are one of us. Bwahahaha! Welcome to our world.

Sometimes, I wonder whether parents exclude autistic people from the conversation about autism in an attempt to maintain the illusion of their own normality. Perhaps, in their heart of hearts, they want to believe that their autistic children will never grow up to be us — as wonderful as we are — so that the parents can somehow disassociate themselves from us and return to the grieved-for land of normal. I’m not sure, but it certainly seems that there is a disdain for autistic adults in the autism community that borders on the irrational. I’m not sure exactly where it all comes from, but I think that a desire to avoid being tainted for life by us is certainly part of it.

The fact is that, like it or not, autism parents have entered the condition of most people who live on this earth. Few of us are normal. In fact, the people who fit the criteria of normal are a very distinct minority, indeed. But for this minority, all kinds of accommodations, privileges, and services are available — a point that leads me to the third source of grief.

Feeling frightened about the autistic child’s future
My feeling is that grief is a natural part of the process of having a disabled child and, contrary to somewhat popular opinion, it’s not always about wanting a different child. It’s often about just being scared shitless on behalf of the one you have. You watch your kid getting bullied, you see the pain the child experiences from being made to feel apart, and you worry about whether your adult child will find a partner, have even a small circle of supportive friends, and be happy. And these fears are not unfounded. A great deal of the time, the unhappiness that we face is not caused by the autism itself, but by the bigotry and cruelty of other people.

As a parent, I see nothing wrong with grieving that your child is going to face prejudice and attempts at exclusion for his or her entire life. You’d have to be living in a fantasy world to think that a disabled person is going to avoid all that in society as presently constituted, and the question of the child’s happiness under those circumstances is crucial.

What any parent of any child wants is that doors open for the child, not close. And most people understand that being normal means that you have access to the best jobs, the best educational opportunities, and the widest range of social opportunities. Normal people get to apply to college and, if they get in, they just pay their money and show up. They don’t have to fill out several pages’ worth of information about the accommodations they need and hope like hell that those accommodations are deemed “reasonable” (by non-disabled people, no less!), so that they can go to the college they’ve worked so hard to get into.

No, normal people already have those accommodations provided for them, without even asking. It’s a wondrous thing.

And what happens when you don’t have those accommodations provided as a matter of course? An easy life, it isn’t. It’s natural to grieve that. Of course, the main thing is not to get stuck in the grief and turn your kid (and yourself) into a victim.

So what do we do?
Do we focus on a cure, do we focus on making autistic people “indistinguishable from peers,” or do we work to build a world in which all the people who fall outside the realm of normal have equal access and equal rights? If we set out to do more than one of these tasks, how do we apportion our time and attention?

I consider it vital that we not make autistic people hold all the responsibility for change. Certainly, there is nothing wrong with trying to help an autistic child communicate effectively and navigate the world, but doing so cannot be a substitute for fighting to change social and cultural attitudes about normality. And the reason is simple: We will never be normal, and idle dreams about elusive cures are a distraction from the work that needs doing.

I passed for normal, to a greater or lesser extent, for most of my life. I still can, in certain contexts. Does that mean that my problems are solved? No. Does it mean that I can walk through the world, assuming that I will be respected and included? No. My difference becomes apparent eventually and, given the wrong circumstances, immediately. Being married, having a child, earning a graduate degree, writing books, and owning a house — none of it changes the fact that the quality of my life is deeply affected by the attitudes I encounter regarding my difference, by the degree to which people accommodate it, and by the ways in which people exclude me on the basis of it. No amount of passing, and no amount of achievement, will ever change that.

Autism parents, do you not want to know this?

I have always known that I am different. Others have always known that I am different. At some very blessed and happy times in my life, other people have seen my difference as a very good thing. And at some very low and very unhappy times in my life, other people have found my difference something to be derided, shamed, even beaten out of me.

Over the course of my life, I’ve acquired skills and learned to adapt, but at my core, I’ve never really changed. I’ve always been autistic. My context changed — sometimes for the better, sometimes not — and those changes had a tremendous influence on whether I succeeded at work, in relationships, and with friends. They made the difference between being abled and being disabled. And the impact upon my self-esteem and self-respect was directly proportional to how much support and respect I received.

So, if you aim for apparent normality as a way to resolve your fears about your autistic child’s life, please be aware that you will not fully solve the problem. Yes, helping your child to navigate the world is crucial, but it can’t be the end of the story. Your child will always be different. Your child will always know that he or she is different — as will others. Your child will never blend completely. Accepting a socially constructed reality called normal, as though it is available to your child means, to borrow Murphy’s words, being complicit in one of the “human artifices whose purpose is to perpetuate society, not clarify it.”

Perpetuating the status quo will not help anyone who has left the land of normal. Clarifying the status quo and fighting to change it means creating a world in which many millions of people — including your child — will finally take their place in the full light of human dignity.

© 2011 by Rachel Cohen-Rottenberg

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