Journeys with Autism

Archive for Marginalization

Autism, Disability, and the Obligation to Get Well

May 11, 2011 Rachel Ableism, Diagnosis, Disabilities, Doctors, Marginalization, Self-Advocacy

I’ve recently begun reading Robert Murphy’s The Body Silent, one of the great books on the social and cultural context of disability. Murphy, a professor of anthropology at Columbia, became a quadriplegic in his fifties as the result of a benign tumor on his spinal cord. He wrote The Body Silent from the perspective of an anthropologist observing himself as a disabled person in the context of late 20th-century America.

His writing immediately spoke to me, in part because I’ve lived my life from the perspective of an anthropologist in a foreign culture, and in part because I recognize so many of my own experiences in his words. I am not very far into the book, but what I’ve read so far has sent my thinking in all kinds of new directions. I am being careful not to read too much at a time without articulating my thoughts on it; the book is so rich that I could lose track of all its implications if I didn’t pause to reflect.

Among the many passages that I’ve found powerful is the following, which describes the social role of a person who becomes ill:

“A person’s ordinary social roles — mother, father, lawyer, baker, student, and so forth — all become temporarily suspended when he or she falls ill. The individual becomes a ‘sick person,’ which relieves him or her of some or all of the ordinary obligations, depending on the severity of the illness.

The suspension of his other duties does not mean that the person playing the sick role has none at all. Quite the contrary; he is saddled with one big obligation: He must make every effort to get well again. In our own doctor-ridden culture, this means that he must seek medical advice; he must take his medicine and follow the doctor’s orders. This expectation mandates the proper role of the sick as one of passivity. The sick person is excused from work or school, household duties are suspended or at least limited, and connubial relations may be put on ice. But in return, he must devote full time to getting better.” (Murphy, 19)

The temporary suspension of numerous social roles in favor of a single imperative to “get well” is a trap that is well-known to many of us. Sometimes, this suspension of other obligations is necessary and welcome. For instance, when I had surgery to remove a degenerative disk in my neck a few years ago, I spent several weeks recovering my strength before I was able to get back to “normal.” And I well remember the feeling that my only role was to heal. At the time, I felt great comfort in knowing that others would take care of business while I recovered.

But the situation becomes much more complicated and troubling when a person moves beyond a short-term illness into a chronic condition. A couple of years ago, I went through a particularly low period with being autistic. During my 50 years of ignorance about my condition, I had pushed myself unmercifully — physically, psychologically, and emotionally — to the point of burnout. At the same time, I had been prescribed benzodiazepines, medication that was wreaking complete havoc with my sensory and emotional life. For awhile, I needed assistance with basic tasks, such as food shopping, housecleaning, and cooking. It was painfully difficult to ask for this help, and my self-esteem suffered significantly.

Two years later, I take much better care of myself. I have adapted to my disability, I have gotten off the benzodiazepines, and I have healed from the burnout. As a result, I no longer need such assistance. But the legacy of having once required it has cast a pall over my life that I have never completely dispelled.

Until now, I’d never known why. I’m beginning to understand, though.

With a condition such as autism, Down Syndrome, or multiple sclerosis, there is no “getting well” in the conventional sense. There can be therapies, accommodations, and the amelioration of certain symptoms, but there is no pill, no surgery, and no treatment that will remove the condition and render the person “normal.” Having any of these conditions, therefore, automatically puts one into the category of “sick” people (think “autism epidemic”), with a concomitant obligation to “get well.” But if you have a condition from which you can not “get well” according to the standards of the larger culture, you are completely unable to fulfill the one social imperative that the world gives you. And if you fail at that one obligation, then the quality of all the other social roles that you might have — father, mother, husband, wife, friend — immediately becomes suspect.

Thus, you end up with the widely held belief that the partners of disabled people are heroic for sticking around, and that they do so only out of pity, as though disabled people are not full and equal participants in the process of their own lives. And you get a great deal of talk about the numerous (and very real) challenges that the parents of disabled children face, to the exclusion of talk about the numerous (and very real) delights that such parents find in their disabled children.

You get T-shirts, mugs, and tote bags that say, “I love someone with autism.” You don’t get T-shirts, mugs, and tote bags that say, “Someone with autism loves me.” I’ve considered making up some items with that message on them, but I think it would only depress me to find out how few I would sell.

Of course, defining us as “sick” generates a great deal of money, energy, and emotion in the race for a “cure.” After all, if our one imperative is to “get well,” the culture is going to make damned sure that we do it. And, inevitably, the only way to get other people to join the search for a cure is to generate FUDD (fear, uncertainty, doubt, and dread) about living with a disability. In the autism world, Autism Speaks is masterful at this form of gamesmanship, which has the net effect of making the parents of autistic children absolutely terrified of what might happen to their children without all the latest treatments, without 40-60 hours per week of expensive therapy, and without that elusive “cure.”

The fact that there are millions of disabled adults who have created happy and fulfilling lives, without full-time treatment and without a cure, seems to matter not at all. We are ignored, and why? We have broken the obligation of being a “sick” person. We have not remained passive. We have not lived our lives in a quest to “get well.” We have lived our lives in a quest to live well as the people we are.

As a result, we find ourselves in the vortex of a great deal of distortion for wanting to simply be at peace with ourselves and carve out a meaningful life. It’s as though, having given up our “patient” status, we’ve committed some sort of cardinal sin. Thus, you get autistic self-advocates, who do not want to be cured, being told that we’re faux autistics. If we reject the role of the “sick” person, with the one overriding obligation to get better, it’s as though we short-circuit the cultural wiring. The response is often along the lines of, “If you refuse to see your autistic mind and body as sick, and you refuse to accept the social role that having such a mind and body entails, then you must not be autistic at all.”

That logic, of course, is not logic at all, which is an indication of how deeply threatening stepping out of our assigned role feels to other people. And the illogic means that we face psychological warfare of the worst kind: we find ourselves verbally stripped of the very condition that is the source of our struggles, our triumphs, our sensitivity, our discipline, and our awareness. In those moments, it’s as though our entire life histories have been erased.

Were we not threatening a deeply held cultural value, the response to us might be somewhat more productive, along the lines of, “I give you a lot of credit for your strength and your accomplishments, and I celebrate that you have a happy and fulfilling life. But please be aware that my adult autistic son, who tries to self-injure all day long, who bloodies himself on a daily basis, who gives himself concussions when he’s stressed, is in a state of irremediable pain that no accommodation can fix. Do you understand why I want to move heaven and earth to find a cure? And, until that help arrives, can you give me some insight as to how I might understand what is happening to him?”

That would be a conversation worth having. Unfortunately, I’ve never seen it actually happen.

In the absence of that conversation, I understand the wholesale rejection of words like “disease,” “disorder,” and “sickness” in the autistic community. I’ve gone to great lengths to distance myself from words like those, and I’ve always felt a great deal of discomfort about it, too. After all, what is so shameful about having a disease, or a disorder, or a sickness? Isn’t rejecting those words just playing into the hands of those who see disability as the worst possible thing that could happen? Don’t we need to reclaim those words and empty them of all of their dehumanizing connotations?

I think we do. But it’s difficult to do so when being labelled diseased or disordered puts you into the trap of having only one social role, and it’s a role you can’t fulfill. Under those circumstances, it’s entirely understandable that the response would be to reject the label altogether.

As I sit here thinking about all of these issues, I’m reminded of someone I never met, but about whom I know a great deal: my husband’s late wife, Karolka, who died of ALS ten years ago, at the age of 55. One of the most memorable things that Bob has ever told me about her has to do with the whole issue of disease and cure.

Even before the diagnosis of ALS was confirmed, Bob and Karolka sought out all kinds medical interventions to try and heal her — or to at least slow down the progression of the condition. And on a regular basis, they would hear from a friend or community member with another great idea for them to try. At a certain point, Karolka decided that it was time to stop chasing a cure, and to start accepting and living her life. Even after she’d made that decision, people would periodically show up with new ideas, but she had moved on, and when she did, she found a great deal of joy.

She never referred to ALS as “my disease.” She always referred to it as “my condition.” And lest you think that she was engaging in feel-good, New Age, mamby-pamby, politically correct nonsense, please allow me to disabuse you of that notion. She had absolutely no time for bullshit of any kind, and the last thing on her mind was a desire to fulfill someone else’s idea of how to talk about her life. But in speaking about ALS as a condition, rather than as a disease, she gave herself a great gift: She made herself an active participant in her process of living and dying, rather than a passive victim of an enemy beyond her control. And she released herself from the obligation of having to “get well,” when getting well was out of the question.

I’m not saying that every disabled person has to see himself or herself the same way. And I’m certainly not saying that it’s not okay to want a cure for one’s condition — although there are a great many troubling consequences to having a cure in a culture in which our main social obligation would be to avail ourselves of it.

What I’m arguing against is the whole idea of the obligation altogether. Far too many people will never have typical neurologies, typical bodies, typical minds, or typical ways of being. Giving disabled people an obligation we can’t fulfill means that we become people of less than equal worth. And it also means that we have very little support to fulfill a number of other roles — such as mother, father, husband, wife, son, daughter, friend, neighbor, and community member — that we want and need, just as everyone else does. The overriding quest for a cure means that an organization like Autism Speaks spends most of its budget on research, and only 4% on services for autistic people living in the here and now. What is this “autism advocacy” organization advocating for, anyway? It is advocating for us to assume one role, and one role only — that of a patient, passively waiting to get better. It is not advocating for us to fulfill our birthright — to participate fully in all that the world offers to typically able-bodied people.

A few years back, after I received my Asperger’s diagnosis, I told a friend of mine who lives in Jerusalem, and who himself lives with a chronic disability. His response was something along the lines of “My sister, I will pray to Our Creator to heal you.” I was rather aghast at his response, as loving and as well-intentioned as it was, but I couldn’t quite articulate why. I wrote something back to the effect of “Please don’t pray for my healing, but for my ability to manage my life with strength and dignity.”

I never head from him on the subject again. But if I had it to do over, I’d expand on my request for his prayers and say, “Please, don’t pray for my healing. Please pray for my strength. Please pray for my dignity. Please pray that I have supportive friends and a loving community. Please pray that I continue to find meaningful work. Please pray that the world stops seeing me as broken. Please pray that others don’t react to me with fear and prejudice. Please pray that I live a long and happy life.”

Perhaps I’ll still ask for those prayers.

61 comments

PBS to Autistic People: If You Can Speak, We’re Not Listening

April 27, 2011 Rachel Ableism, Disabilities, Empathy, Marginalization, Self-Advocacy

On an April 26 NewsHour segment, Robert MacNeil fielded several viewer-submitted questions regarding his Autism Now series. Among other things, Mr. MacNeil was asked why he had not made visible the lives of autistic adults all along the autism spectrum, and why he had not invited autistic people to share our experiences and our concerns.

His answers were, in a word, disgraceful.

In the entire six-part series, Mr. MacNeil talked with only one autistic person. He asked Zach Hamrick, a young man with autism, about his job. Here is the exchange, in its entirety:

Robert MacNeil: Almost finished?
Zach Hamrick: Yes.
Robert MacNeil: Do you like the job?
Zach Hamrick: Yes.
Robert MacNeil: Do you find it easy, or is it hard?
Zach Hamrick: Yes.

Needless to say, asking an autistic person basic questions that require one-word answers, for a total of ten seconds, on a program that extends over six nights, does not even begin to address the nature of our lives. And so, I was very interested in seeing how Mr. MacNeil would handle questions about having excluded us from the program.

The interchange on the NewsHour segment took place between Mr. MacNeil and correspondent Hari Sreenivasan, with Mr. Sreenivasan forwarding the questions, and Mr. MacNeil supplying the answers. Two particular sets of questions caught my attention.

First, Mr. Sreenivasan asks, “[H]ow did you choose the stories that you did? And what else do you wish you could have done?”

Mr. MacNeil replies, “We didn’t talk about adults living now with autism, which is a very interesting story, and what their lives are, how they work, where they live, what kind of support they need.”

He considers our lives “a very interesting story” — an outsider’s perspective, par excellence. It’s as though we are a fascinating anthropological research project, rather than people, with basic human needs, in the here and now.

He continues, “We did concentrate on those about to become adults. And if anybody is interested in this and wants to read the transcript of the interview with Peter Gerhardt of the McCarton School in New York who is an expert on this, it’s really fascinating on what he envisions the lives of adults can be and should be.”

Yes, let’s talk to a non-autistic person who is an “expert” on what our lives can and should be, rather than to autistic people — who not only know how our lives can and should be, but who also know how they actually are. Why Mr. MacNeil feels the constant need to sidestep us in this way, to talk to other people about us, and to direct people to speak with those who “envision” our lives, rather than to those of us who actually live them, is beyond my capacity to fully understand. For a journalist whose only aim should be to uncover the truth, continually ignoring the primary source of that truth violates all journalistic standards, as well as basic common sense.

Rest assured, though, that things only go downhill from here. In forwarding another concern from a viewer, Mr. Sreenivasan says: “There’s a comment from John Horton, who writes in and says: ‘I think an adult with autism should have been included on the roundtable. They’re talking about them but not to them.’”

Mr. MacNeil’s response is so appalling, so illogical, and so dismissive that it will take me awhile to untangle all its implications.

He begins by saying, “Well, perhaps he’s right.”

Perhaps? It’s as though the question of interviewing the subjects of his series had never occurred to him before.

And he continues, “We tried to concentrate on what we thought were urgent issues, urgent problems. And a lot of adults with autism, particularly those who describe themselves as a kind of neurodiversity community, are high-functioning people with autism, who have busy and productive lives in the world, who serve a wonderful purpose of helping the community at large to understand and witness autism and be tolerant of it.

But they speak for themselves. And we didn’t see them as an urgent issue, as urgent as the impending arrival into adulthood of hundreds of thousands of teenagers with autism.”

Oh, God in heaven, where to begin?

Let’s begin by discussing the urgencies that attend the lives of autistic adults, shall we? Unemployment rates for autistic adults are skyrocketing, and services for developmentally adults are being ruthlessly cut. In a 2009 study in the UK, the National Autistic Society found that “79 percent of adults with autism who receive government assistance would like to work. But limited resources and lack of understanding mean that few have jobs and many have trouble even getting government assistance, leaving them ‘consigned to poverty’.” The picture in the US is equally bleak.

Moreover, autistic adults are especially vulnerable to becoming victims of crime. According to the Department of Justice, people with developmental disabilities, including autism, have a four to ten times higher risk of becoming crime victims and are twice as likely to be sexually abused as people without those disabilities.

Is it any wonder that the rates of clinical depression, anxiety disorders, and suicide of autistic people are higher than those of the general population?

Is all that urgent enough for you, Mr. MacNeil?

As for the idea that autistic adults who have “busy and productive lives in the world” should be excluded from a discussion about autism because “they can speak for themselves” — well, it’s absurd on the face of it. Why should being able to attain independence — which, by the way, is what every autism parent wishes for his or her child — disqualify us from speaking about our insights, our experiences, our concerns, and our views in order to improve the public’s understanding of the lives of autistic people? After all, Mr. MacNeil gave non-autistic people with “busy and productive lives in the world” more than their fair share of airtime on his program. Their level of functioning did not enter into his decision about whether to include them. Why should it affect his decision about whether to include us?

And why, oh why, should our ability to speak for ourselves be a reason not to allow us to speak at all? How does that improve the lives of autistic children in the here and now? How does it improve their prospects for the future? If they attain some measure of fulfillment and independence in adulthood, will they, too, be excluded from the conversation?

The logic of Mr. MacNeil’s statements works along familiar and divisive lines: If you can speak for yourself, you are not autistic enough to speak for other autistics. But if you cannot speak for yourself in any kind of conventional way, we will not allow other autistic people to speak about you, to express concern for you, to enter into the discussion about how to support you, or to share their reflections about what your experience of life might be like. We will only allow non-autistic people those privileges.

If “high-functioning” autistic people are considered ill-equipped to understand the experience of others on the spectrum, then on what logical or ethical basis can Mr. MacNeil, who is not autistic at all, justify speaking for any of us? If Mr. MacNeil has the right to speak about autistic people, then surely, we do, too.

Of course, I categorically reject the idea that only “high-functioning” adults can speak for themselves. There are many people, all along the spectrum, who can speak for themselves in a myriad of ways. Consider Carly Fleishmann, a nonverbal teenager diagnosed with classic autism and apraxia, who has learned to type over the past two years, and now attends honors classes in a mainstream high school. She is a funny, insightful, passionate young woman who travels the country helping people understand the nature of autism.

Or learn about Eric Duquette. When he was a child, his parents were told that he would end up in an institution. Last year, he was the salutatorian of his high school class, after having been accepted into every college to which he applied.

Or listen to the words of Jeremy Sicile-Kira, a severely autistic young man who graduated from high school last year and gave a speech, using a voice synthesizer, at his graduation ceremony. He, too, is going to college.

So, Mr. MacNeil, if you think that those of us who can speak are too “high-functioning” to talk about the lives of people diagnosed with classic autism, please go ahead and talk with them yourself.

You will find us describing the experience of autism in much the same terms. And you would do well to listen. After all, anyone who wants to create an “authoritative” series on autism needs to portray the lives of people all along the deep, wide, and diverse autism spectrum.

We will continue to expect nothing less.

38 comments

Resisting Stereotypes: A Response

March 3, 2011 Rachel Ableism, Disabilities, Marginalization

Last week, I wrote a letter to the local paper about a column that I felt had perpetuated stereotypes about mentally ill people. This week, the writer of the column responded in a letter of her own. You can find it here.

I thought it was a pretty good response. She acknowledged the necessity of taking care with one’s words and expressed appreciation for my having let her know that she’d missed the mark. She didn’t seem to see the problem with referring to people as “poor souls,” however, and that was disappointing, but I’m glad that the conversation went in a positive direction.

I’d be interested in hearing what you think.

13 comments

Resisting Stereotypes

February 24, 2011 Rachel Ableism, Disabilities, Marginalization

Recently, our local weekly paper ran a column about the roots of violence in the United States, particularly with reference to the bloodshed that took place in Tucson last month. While I agreed with the author’s take on the ease with which one can acquire all manner of weapons in this country, I was unhappy with the ways in which her column perpetuated stereotypes about people with mental illness.

My response appeared this week. I’d love to hear your comments.

30 comments

Visibility and Human Worth in the Disability Community

January 26, 2011 Rachel Ableism, Community, Disabilities, Marginalization

Ever since I began dealing with the impact of being disabled, I’ve found myself struggling with the ways in which the larger culture equates achievement with human worth. After all, who gets the most respect in our society? The quiet, gentle people who live their lives without fanfare, being kind to one another? The working poor? People who take care of their severely disabled children? The severely disabled children themselves?

No. The superstars are the ones whom the society calls “productive.” They have a lot of money, a list of achievements a mile long, or both. They have resumes and tax returns that go on for many pages. They’re the people whose obituaries are an extended list of every organization they’ve ever graced with their presence, and every award, every plaque, and every honor that has ever been bestowed upon them.

Now, I’ve never sought either wealth or fame and so, until recently, I couldn’t see how deeply I’d been buying into the “achievement equals human worth” paradigm. After all, I’ve been an outsider all my life. I’ve always had a visceral identification with the most vulnerable people in any society. I’ve never respected people on the basis of money or status. I’ve always been on the side of the underdog, and I’ve always considered myself an ally of oppressed people everywhere. But, at the same time, I’ve hugely bought into the idea that my worth is based on what I can do, not on who I am. And buying into that myth on my own behalf has kept me from being the kind of ally I’ve always considered myself.

I started to become more sensitized to the limitations of my own vision when I read a post called Different, Not More, written by the mother of an autistic young man with severe learning disabilities. The following lines had a particular impact on me:

“Why are we in the autism community, parents and autistic people alike, so enthusiastic about stories…of high achievers or people who create recognisably satisfying lives or people who defy assumptions by demonstrating humour and intelligence? We say ‘This is autism’ and rightly so: this is, indeed, some of the many shades of the spectrum. But what is it that makes examples like these particularly attractive to us?

Why do we feel more comfortable with examples of people who demonstrate attributes like these? Is there a danger of making a certain ‘type’ of person the ‘poster child’ of autism?

As I write, BB sits next to me. Those achievements we’ve just talked about seem nigh impossible for him (although he’ll achieve other, equally important, things). He’s rocking, fingers in his ears. He’s chanting lines from “Merlin the Magical Puppy”, over and over again. Yes, he’s got learning disabilities. He’s also infinitely precious and worthy of respect.”

Why, indeed, are the examples of high achievers so attractive to us? Whenever I read these words, I immediately think of the laundry list of achievements that appears in the sidebar of my blog: wife, mother, writer, editor, artist, photographer, community volunteer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). And did I mention that I have a BA and an MA in English? And that I had a fifteen-year career as a technical writer? And that I bought and paid off a house in six years? And that I’ve published two books? And that I can cook, clean, shop, drive, and manage my finances independently? And more?

Yeah, just ask me. I’ll tell ya all about it.

Why do I feel the need to list these things out? What exactly am I trying to prove here? Well, to be fair, I’m trying to prove that being autistic does not keep me from achievement, from independence, from getting married, from raising a kid, or from going to school. After all, there is nothing wrong with accomplishment, nothing wrong with independence, and nothing wrong with getting married, or raising a kid, or getting an education. I feel compelled to prove that I can do all of these things, not just for my own sake, but for the sake of other autistics, and for the sake of others in the larger disability community. No one should assume that we cannot do things because we are disabled.

Fair enough. And, to be perfectly honest, my laundry list gets me a certain amount of respect from people who might otherwise see that I’m autistic and conclude that I’m not worth listening to. I don’t particularly like playing that game, but given that I want to reach people who might not be kindly disposed to us in the first place, I go along with it.

But guess who gets marginalized every time I reinforce the paradigm? People with severe disabilities, that’s who. People who will never “measure up,” in any way, shape, or form, to social norms. And they shouldn’t have to measure up. They just shouldn’t have to. They shouldn’t be objects of pity, or derision, or fear, or judgment. They are people, with all the same rights to human dignity and respect as anyone else. Period.

So what do we do here? It’s an imperfect world, full of imperfect choices. The best strategy that I have seen comes from a post called Why “Inspirational” Stories Bug Me, written by the mother of a severely disabled child. In response to the ways that disability sites and magazines marginalize people with severe disabilities in favor of the more conventional “success” stories, she writes:

“They are trying really, really hard to break stereotypes. They are trying to make a point: give disabled people a chance. Get over your issues and deal with disability…in a positive way. Who could argue with that?

So you get the stories…the inspirational crip stories, or what I like to call the ‘fashion crip’ view. Everyone is happy, everyone is succeeding, everyone is fitting into what society perceives as an acceptable way of being: school, job, self-sufficiency (or near so), social life, contribution and participation.

…

Great. NOW, show me a picture of a kid in an involved wheelchair, with a vent, a g-tube pump and a suction device. Show me a kid with combined severe cognitive and physical disabilities. Talk about dystonia, spasm, tone, seizures, scoliosis, drop foot, silent aspiration. Show me the parent(s). Show me how they are living. In short…show me something that I can identify with. Show me something that acknowledges the existence of this type of disability and everything it entails. Openly discuss struggles as well as joys. Tell me, tell my kid that what is important is just getting on with our day to day lives as best we can, even without a specific contribution or goal or happy-ending-in-sight. We can be “happy” and “successful” if you broaden the definition of those words.”

In other words: Bring everybody out. Show the full range of disability. Redefine success. Redefine happiness. Redefine achievement. Redefine worth. Do away with pity, with gawking, with revulsion. Open everyone up to the light of day. Listen to what our lives are like, and respect them. All of them.

All I can say to that is: Hell, yes! And about time, too.

On both the blogs I’ve quoted, I’ve seen comments from parents who are very angry at people with “milder” disabilities. I’ve been especially struck by the level of hostility from parents of severely disabled autistic children; often, it’s directed at people with Asperger’s or otherwise “high-functioning” autism. I’d seen this hostility before, most famously among people who attempt to undiagnose us when they discover that we can speak, read, write, or have families. But now I’m seeing it more broadly.

At first, in trying to figure out the source of the hostility, I assigned it to misdirected grief and frustration. But that’s not the whole picture. I like to think that most people, even the ones with whom I vehemently disagree, have a valid point there somewhere. And now, I get more of what’s driving them. It’s the sense that the conventional “success” stories are taking over, that their kids are becoming invisible, and that they have become pariahs within the disability community. It’s the sense that the money is going to children who have more of a chance at conventional “success” than their more severely disabled peers.

So, we have all kinds of “inspirational” stories about people in wheelchairs skydiving, and people with autism getting doctorates, and people with dyslexia becoming governors of small New England states. And we should celebrate every one of these things and every one of these people, but the celebration should not be so loud and so raucous that it drowns out the voices and the realities of people who cannot possibly achieve any of those things.

After all, haven’t we all been through enough of THAT?

It pains and angers me to hear that people feel like pariahs within the disability community. It saddens me no end to watch people direct hostility at one another. In terms of money, in terms of services, and in terms of air time, it’s clear that we’re all fighting one another over very tiny slices of a very small pie. And our continuing to do so only helps the people doling out the money, the services, and the air time. It makes their jobs easier to watch us tear each other apart competing for our tiny slices than to deal with a strong, united disability community, demanding to share equally in a much bigger pie.

To me, the way to begin building that community is to fight to bring all of us into view, and to assert that we will no longer buy into the idea that some people are more worthy of attention than others. We are all worthy. We are all infinitely precious. And we all need to start getting together on what we have in common. The differences are there, and we shouldn’t fear them. In fact, we must find unity within diversity. After all, if we can’t build a diverse community of our own, how can we expect the larger society to open to include us?

20 comments

Autism Parents: It’s Time to Stand Up With Us

January 8, 2011 Rachel Community, Empathy, Friendship, Marginalization, Parenting, Self-Advocacy

I’ve recently had a very painful experience on another site. It’s not the first such experience I’ve ever had, and it likely won’t be the last. I’m not going to mention the name of the site, partly because I like the people who run it, and partly because what happened is not at all particular to them. It happens all the time, and it wouldn’t be fair to call them out specifically without naming every other equally problematic situation. Similar instances are so abundant (and multiply so rapidly) that I’d never get to the end of it.

The site I’m talking about is not someone’s personal blog. What people say and do on their personal blogs is none of my business, really. I mean, if I don’t like what they say, I can just stop reading, yes? No one invited me in, and I can always find the door. However, the site in question is one of the many “autism community” sites that posts articles from folks involved with autism in one way or another. I tend to have more of an investment in those sites, because most of them actively invite participation from all comers and present themselves as being inclusive. I’m a sucker for all that. Truly.

But it’s one thing to say “We want to hear a range of perspectives” and “We’re an inclusive community” and quite another thing to make it safe for everyone to participate. When it comes to places being safe for all comers in the autism community, we Autistics tend come in last.

I’m pretty certain that most people who read my blog can come up with any number of examples of what I’m talking about. In fact, these experiences are probably the reason that a lot of people come to my blog, and others like it, in the first place. But for the sake of clarity, I’m going to be specific about the kinds of things that make places feel unsafe. In addition to references to autism as an “epidemic,” these things include, but are certainly not limited to, posts and comments in which the writer says the following:

How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease

Now, I’m not saying that it’s not okay to feel these things. Everyone is human, and everyone has the experience of life not aligning with their deepest hopes and dreams. That’s where grief comes from and, trust me, we Autistics have had these experiences—not because something is Terribly Wrong With Us, but because we once had a dream that the world would love and respect us for who we are, as full human beings with a complete set of human feelings, and the world seems bent on reminding us that it just ain’t happening.

So yeah, we totally get it. Truly. And as I said, it’s fine for people to have these feelings. What’s not fine, to my mind, is to create a forum that is supposed to be inclusive, and then allow people to say demeaning things without a hint of self-reflection or self-criticism. It’s one thing to say, “When I got my kid’s autism diagnosis, it felt like I’d just been told she had cancer, but then I realized how demeaning that is and, for the sake of my child and others like her, I’m not going there again.” I support that. But it’s quite another thing to say, “When I got my kid’s autism diagnosis, I felt like I’d just been told she had cancer, and why should such a thing happen to me?” And when ten, or twenty, or thirty, or a hundred people chime in with a version of “I know! It’s all so unfair!” without any pushback at all from anyone, it just adds insult to injury.

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours? To tell you the truth, I don’t know and, at this point, I don’t care. Over the past couple of days, I’ve realized that I’ve got to stop asking the Why is this happening? question. It’s a bottomless pit of a question, because the answers all have to do with people’s personal issues and, if we keep waiting until people get clear on their personal issues, nothing will ever get better.

Rather than framing it as a personal issue, I’m going to frame it as an ethical issue, because that’s really what it is. So I’m not going to burn a lot more grey matter on the Why is this happening? question. Instead, I going to turn my attention to the What can we do to stop this from happening? question.

As one of my fellow Autists said to me, just imagine if someone compared his or her gay child’s coming out with a Tragedy of Epic Proportions. There are some people in the world who do consider it a Tragedy of Epic Proportions to have a gay child, but a large proportion of straight people would consider that perspective to be seriously messed up. And not only would they consider it seriously messed up, but they’d take the expression of that perspective as a golden opportunity to say so. It’s not that they’re insensitive to the feelings of people who believe that their gay children are literally headed straight to hell. The pain of that must be excruciating. It’s that they’re sensitive to the impact of this kind of talk on people in the LGBT community and what it does to the lives of living, breathing, fully formed human beings, every minute of every day.

But I have never—and I mean, never—seen any non-Autistic person on any blog, anywhere, stand up and put a stop to this kind of talk about Autistics. I’ve seen Autistic people try to put a stop to it. I’ve been one of them. But not once has any non-Autistic person backed us up by telling their fellow non-Autistics to knock it off.

Usually, when I protest, I get roundly ignored. If I do get a response, it’s generally along the lines of, “Thank you for your perspective, Rachel. It’s very valuable.” When I’m posting on a mom blog, and I share my insights about what the person’s Autistic child might be going through, I love hearing exactly that response. In fact, I only read mom blogs in which people appreciate my contribution, because those moms realize that Autistic adults can give them a perspective that no one else can. But when I’m crying out against demeaning words that harm the minds and hearts of Autistic people, telling me that what I’m saying is valuable isn’t nearly enough. Not even close.

Parents, you have to stand up against demeaning words. You have to push back. You cannot leave it to us to carry this burden alone. When I protested about the situation on the site in question, one of the site owners said, “I think it’s important that you keep coming back here to educate people.” And sure, I’m all for educating people—but it’s a bit much to put that responsibility solely on the shoulders of the beleaguered minority, and to walk away from the responsibility yourself. If you don’t understand that you need to stand up with us, how successful can my “educating” really be? And if you’re a member of the majority, and you don’t serve notice to other people in the majority that you will not tolerate people using words that batter our hearts and minds, they will feel permitted to keep using those words. Forever.

If it were only people of color who had fought for civil rights in America, we wouldn’t have any civil rights legislation at all. If it were only LGBT people who had fought for gay marriage, I woudn’t have lived in two states that have legalized it. The outrage of the majority is necessary to the civil rights of the minority. Always. We can keep your feet to the fire, but we can’t change the world alone.

Look at all the violence against women in our world. Why does it happen? We’ve had feminism, and the women’s movement, and all kinds of powerful women in all kinds of positions of authority, for many decades now, and yet, women are still being battered at an alarming rate. It’s not because women haven’t worked hard to end it. It’s because most men consider it a woman’s problem. Plenty of men do not assault women, but how many of these peaceful men actually get together and say, “We must put a stop to this. We must do everything we can to stop other men from believing that it’s perfectly all right to beat up a woman”? Precious few. They figure that they’re not doing the battering, and that’s enough for them.

It isn’t. And if you really want to make the world better for your Autistic children, it isn’t enough to respond with “Thank you for your perspective” when Autistic people say, “Stop using words that demean and belittle us.” It isn’t enough to be the one who doesn’t use those words. It’s time to start calling out the people who do. It’s time to say, “Stop using those words. They’re not just demeaning to your child. They’re demeaning to my child. They’re demeaning to any Autistic person who hears them, and they’re demeaning to Autistic people everywhere.”

In my own community, there are a number of Autistic young adults that I cannot reach. They do not want to spend time with other Autistics—not because they’re decided that they have better things to do, but because they have spent their lives so battered by the talk of pervasive wrongness and tragedy and brokenness that they are in complete rebellion against being Autistic at all. And I can’t say that I blame them. But these are not people who are “passing” for neurotypical. These are people who are struggling with everyday tasks and seriously in need of support. And yet, they want nothing to do with the very people who could include them in a supportive community.

I don’t think that every Autistic has to self-identify as Autistic; there are plenty of ways to construct identity, and as long as that identity is positive, I’m happy. But we’re not talking about people who have constructed a positive identity. We’re talking about people who are fleeing from themselves and ending up completely isolated, with neither a clear, healthy sense of self nor a welcoming group of people in which to be themselves. And why? Because they’ve heard one, long, unbroken message all their lives that they are one big tragic disappointment, and no one in their lives has put a stop to it.

I will spend the rest of my life helping Autistic people to create a strong, empowered, positive Autistic identity, free of shame and stigma. I know many people in the Autistic community who have the same commitment. And community is crucial; without it, we’re stranded. But creating a refuge is not enough. We have to create a world in which people do not feel like walking disappointments. We can talk about inclusion all we want, but if people feel that their very existence is a tragedy, they can’t even begin to avail themselves of what inclusion really means.

So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.

75 comments

Reclaiming Memory: Searching for Great-Aunt Sarah

January 2, 2011 Rachel Ableism, Disabilities, Marginalization, Neurodiversity, Spectrum Pride

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

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

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

I was saddened by everything I found.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

No more Aunt Sarahs.

Not now. Not ever.

39 comments

Neurodiversity, Self-Determination, and the Magic Pill

November 3, 2010 Rachel Ableism, Diagnosis, Marginalization, Medications, Privilege, Spectrum Pride

Every now and then, I get caught up in the whole question of a cure for autism.

It’s not that I believe that a cure is possible. I don’t. How can you cure who I am and leave me whole? How can you isolate something called “autism” when it pervades every part of me? And it’s not that I would want to be cured were it even possible. I wouldn’t. I like myself just fine. What I don’t like are the loud, insistent voices that tell me I’m not fine.

What hooks me into the discussion about a cure is the accusation that, by criticizing the overriding focus on a cure, I’m telling people what’s best for their autistic children, and that I want to take away free choice. After all, people say, what would be so bad about having a cure? You could choose to take it or not. I’m absolutely committed to the principle of self-determination for every person on the planet, so the accusation that I might be compromising that principle gives me pause and makes me examine my thinking.

What would be the consequences of a magic pill to cure autism? Certainly, some people could choose to take it, and I’m all for free choice. But free choice assumes a neutral environment in which there is no pressure to make one choice or the other. We don’t have a neutral environment. We have an environment in which professionals, teachers, lay people, and well-funded organizations tell us that we are impaired, broken, sick, diseased, tragic, disordered burdens on those we love. They say that we don’t know how to love, that we can’t speak for ourselves, and that our lives aren’t of worth equal to the lives of others.

Given this environment, no matter what our place on the spectrum, how long would it be until you or I would be pressured to take “the cure”? How long would it be before parents were pressured to give their autistic children “the cure”? How long would it be before any autistic person, self-injuring or not, verbal or not, intellectually disabled or not, were pressured to take “the cure”? In the world as currently constituted, it wouldn’t be long at all.

And what might be the consequences of refusal? What might happen to a parent who refused to cure his or her child, especially if that child had been deemed “low-functioning”? There are people who believe it is child abuse to bring a disabled child into this world. What might they think of a parent who made a free-willed choice not to give the cure to his or her self-injuring child? These are the questions that give me pause.

I have realized of late, and to my great dismay, that all of the things I’ve taken pride in all my life—my intense focus, my seriousness, my blunt honesty, my rejection of social hypocrisy, my innocence, my insistence that people follow rules, my passion for fairness, my huge vocabulary, my early reading ability, my uniqueness, my acute sensitivity, my love of patterns, my nearly photographic memory—are now all evidence of a disorder. Does anyone really believe that it’s just our so-called “low-functioning” fellow travellers who might be pressured to be cured? It’s not—not when the pressure to medicate children all along the spectrum in order to render them fit for school and life is reaching dangerous proportions. The definition of what is “normal” is getting more narrow every day, and we autistics don’t fit, no matter where on the spectrum we find ourselves. I simply can’t separate myself from anyone on the spectrum and say that perhaps they should be cured and I shouldn’t. Until everyone on the spectrum has full self-determination in an environment in which free choice is a real possibility, the choices get narrower, not wider.

Parents often accuse people in the neurodiversity movement of telling them how to treat their kids. I’m not particularly comfortable with aligning myself with any movement, for a number of reasons, chief among which is that when I do, discussions tend to become polarized and unproductive. People begin seeing one another as purveyors of an ideology, rather than as human beings, with the result that both nuance and sensitivity go right out the window. But I will be an ally of anyone who fights for what’s right, and from what I can see, the neurodiversity movement is fighting for an environment in which parents and their autistic children can make free-willed, empowering choices. I have no problem stepping up and making myself an ally in that fight, because we’re all in this together, no matter how many times some people try to dismiss autistic self-advocates by telling us that we’re not really autistic and don’t really suffer.

We suffer. We suffer from all the sickness that saturates the culture in which we live. Heal this culture from its obsession with disorders. Heal the nastiness of the “autism wars.” Heal the impact of the vitriol flung at those of us who are simply asking for someone to listen. Heal the damage inflicted on entire generations of children who will grow up believing that they are broken and need to be fixed simply because they perceive the world in non-normative ways. Heal the ignorance. Heal the privilege of defining what’s “normal.” Heal a society that turns difference into disease in the blink of an eye.

And then maybe we’ll be able to have a rational conversation about the concept of cure. Until then, the conversation is simply an excuse to take out our suffering on one another, and inflicting pain doesn’t move the process forward. So I’ll keep fighting for a world that respects and celebrates each and every person, because that’s the only kind of world in which true self-determination is possible.

44 comments

Speak Up on November 1st!

October 22, 2010 Rachel Communication, Community, Marginalization, Self-Advocacy

On November 1st, people all over the world are being asked to stay off social networking sites as part of a Communication Shutdown. This initiative is the brainchild of an Australian organization called the AEIOU Foundation for Children with Autism. To join, you make a donation to receive a CHAPP (charity app). The CHAPP gives you a shutdown badge to wear online and adds your picture to a whole collection of photographs of other supporters, including celebrities. (Wow! Celebrities!) The donation you make goes to an “autism charity” in your home country.

In addition to raising money, the aim of the Communication Shutdown is to help people understand what it’s like to be autistic. According to the website devoted to the initiative:

Social communication is one of the biggest challenges for people with autism. By choosing to shutdown your social networks for one day, you will have some idea of what it’s like for people with autism who face this challenge every day.

Rachael Harris, a counsellor and supporter, who herself is on the autism spectrum, put it best when she said, “Electing to shutdown social communication mirrors autistic silence. But it also draws attention to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others. The CHAPP is a powerful way to create a sense of empathy towards those on the autism spectrum.”

Whenever I hear ideas like these, I’m reminded of those Highlights magazine games where you look at a picture and start scanning for all the things that don’t belong there. Where to begin?

First of all, what is the AEIOU Foundation for Children with Autism? It’s an organization devoted to early intervention strategies for autistic children between two-and-a-half and six years of age. Looking at the website, I can’t find any specific information about what those early intervention strategies might be. If we’re talking ABA, I’m outta here.

Despite the lack of specificity about therapeutic strategies, I have no trouble finding information on the website about the people who run the organization. And guess what? Not a single one of them is autistic. Not one. Running an autism organization without any actual autistic people in it is like running a synagogue without any actual Jewish people in it. Of course, if they had autistic people running the place, they might not be raising money for such organizations as the National Autism Association, whose motto is “Think Autism. Think Cure.”

Which leads me to my next question: If “electing to shutdown social communication mirrors autistic silence,” what is the source of that silence? Is it that some autistic people aren’t verbal? If so, our nonverbal fellow autists are certainly communicating in other ways: through art, through writing, through nonverbal behavior. I thought non-autistics are supposed to be stellar about picking up nonverbal behavior. When they’re communicating with one another, they use nonverbal signals all the time. It makes up 90% of their communication. It’s what we autists supposedly lack the ability to do. But when we autists communicate by our behavior, well, that’s just a tragedy.

What’s the tragedy? That people can’t speak? Or that too few are listening?

Whether we’re verbal or nonverbal, does telling people to stay off social communication networks really create empathy for us? The Internet is how we find one another. It’s where many of us feel heard. It’s where many of us feel most comfortable. Staying away from any form of online communication will not draw attention “to the isolation and intense loneliness experienced by those who are impeded from connecting socially with others.” We’re not impeded from connecting socially online. And we wouldn’t be impeded from connecting socially in the rest of the world if people had a little more empathy for how we feel and met us halfway. At any rate, it’s counterproductive to tell non-autistic people to stay away from online sites when so many autistic people overcome “isolation and intense loneliness” by connecting with one another online. How can anyone possibly develop empathy for us if they’re not even aware that we speak loudly and clearly in our online communities?

The big pink elephant in the livingroom, of course, is that autistic people are not silent. Far from it. We communicate all the time, just like anyone else. But we are being silenced every day by the world we live in, and absolutely nothing about the Communication Shutdown speaks to the multitude of ways in which we are silenced:

We are silenced every time non-autistic people say we are silent.

We are silenced when “autism organizations” speak for us rather than including us.

We are silenced when the “autism community” isn’t led by autistic people.

We are silenced every time non-autistic people call each other “experts” and ignore the fact that we actually live the autistic experience every day.

We are silenced when people give to “autism charities” on our behalf, as though we are victims in need of rescue.

We are silenced every time we are ignored, in situations large and small.

We are silenced when people do not have enough empathy to invite us into a conversation.

We are silenced every time we are told we are “too sensitive” in the face of bullying, harassment, and social ostracism.

We are silenced every time that non-autistic people treat us as though we’re broken.

We are silenced by every act of disrespect, dismissal, and ignorance we encounter.

But we do not have to remain silent. Corina Becker at No Stereotypes Here has a counterproposal: Make November 1st Autistics Speaking Day. She writes:

[O]n November 1st, Autistic people should speak up and be heard…[I]n the absence of NT voices, Autistics should reclaim the Autism community by communicating in our own ways on our life experiences…I would like the day to acknowledge our difficulties, yes, but also share our strengths, our passions, our interests, our “obsessions”…And so, for the intent of raising Autism awareness and battling negative stereotypes about Autism, I call that November 1st be Autistics Speaking Day.

Her proposal mirrors my initial response to hearing about the Communication Shutdown. Flood the social networking sites with our voices. Provide lots and lots of links to blogs by autistic people. If you’re like me, and don’t use Facebook or Twitter, ask that someone you know publish a link to your best blog pieces.

Raise up your voices. Let us be heard.

And for all of you who want to raise “autism awareness,” I have a simple solution: Listen to us.

46 comments

How Do You Feel About Coming Out?

October 2, 2010 Rachel Ableism, Community, Marginalization, Spectrum Pride

Some of you might have noticed that I’m blogging less about my inner workings and more about the discourse surrounding autistic people in the larger world. As I’ve watched this change happen, I’ve had some time to reflect on what’s going on.

Occasionally, I’ll get a new insight into the dynamics of how I work, and I’ll blog about it, but looking at the nuts and bolts of myself isn’t a topic that fascinates as it once did. Call it moving on from a special interest. Or just getting tired of myself. Either one with work.

I also seem to be suffering from “disclosure fatigue.” For the first year and a half of this blog, I talked about a number of different issues in my life, from family relationships to sensory issues to my feelings about being autistic. Lately, I’ve been needing to keep some things more private, and to create more distance between my public self and my private self. There is plenty of crossover between the two, even now, but not as much as before. I just have to pull back some.

When it comes down to it, I’m feeling vulnerable about being “out,” blogging under my real name, and self-identifying as autistic. I’m not sure where the vulnerability comes from, given that I’ve been “out” and blogging non-anonymously from the beginning, and that I substituted “autistic” for “Aspie” several months ago. It may be the feeling of getting caught in the crossfire between people who say I have no right to call myself autistic when I’m an Aspie, and people who look at the word autistic and see only the stigma. Both points of view lie at an extreme, and I know that people at an extreme are not usually open to reason. They are usually coming from a place of grief and fear.

I have to admit that I sometimes have the impulse to find some shelter from both groups by running back to the Asperger’s label, but it would just be a temporary refuge. Asperger’s and “high-functioning autism” are the same thing. If I take back the Asperger’s designation, it’s not as though the “if you can write, you can’t be autistic” crowd is going to lay off, or that the euphemism of Asperger’s is going to get the stigma of autism very far away from me. Any expectation that either will happen is just an illusion. I do my best not to live my life based on illusions.

The whole reason that I chose to call myself autistic rather than Aspie is that far too many Aspies seek to distance themselves from the stigma of autism. Trust me, I understand the impulse, but it’s just plain wrong to abandon people who are on the spectrum with us, especially people who are even more marginalized than we are because they don’t have the ability to “pass” for a moment. And the more I feel how wrong it is, the more I feel the vulnerability of the autism label. On my difficult days, I find myself fearing the judgment of others. I worry about whether people will see me as a collection of negative stereotypes rather than a full-fledged human being. I live in a community that largely accepts me and welcomes me, and yet, on a bad day, I find myself worrying about having to fight injustices that will break my heart.

I’m not sure what to do with the fear and vulnerability except to let them power me into strength and action. After all, there are two things you can do with vulnerability: you can fold or you can be strong. I’m taking the latter course, even though some days, it takes a major effort of will to move past the fear into power. There are so many times that I’d like to just call the whole thing off, to go back and erase the Asperger’s assessment, to forget about being autistic as some sort of weird dream, and yet, I can’t. This is who I am.

So I’m going to keep on fighting for us, I’m going to keep on being proud, and I’m going to keep on speaking my mind. And yes, I may very well come up against mind-boggling ignorance and injustice, but that’s the cost of bringing the world into a brighter day. Why should I shrink from them, when so many people around the planet have no choice but to face them down?

So tell me, dear readers, whether you use the Asperger’s label or not, how do you feel about coming out? Do you feel vulnerable? Powerful? Liberated? I would really like to know.

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