Archive for April 30, 2011

Autism in the Classroom: Personal Reflections

April 30, 2011 Rachel Education, Hearing, Modes of Thought, Sensory Processing Issues, Speech, Visual/Spatial Skills

Earlier this month, a teacher at a school in Florida contacted me about helping with a training session. The training will take place on May 5. She wanted to get an insider’s perspective about navigating the school environment as a person with autism, and she was hoping that I would put together a video about my childhood experiences in the school system.

Of course, I said yes. I had never put together a presentation like this one before, but it was a lot of fun to do, and I’m very happy with the result.

I’ve love to hear your comments. If you are a parent or a teacher, did you find the information helpful? And if you are autistic, how do you remember your own school experiences?

—

For those with visual difficulties, and for others who prefer reading text, here is a transcript of the video, slightly edited to remove references to the photographs in it:

Autism in the Classroom: Personal Reflections
A Presentation by Rachel Cohen-Rottenberg

The Lewis School
Valparaiso, Florida
May 5, 2011

My name is Rachel Cohen-Rottenberg.

I’m a 52-year-old wife, mother, writer, and artist with Asperger’s Syndrome. I was diagnosed at 50. I’m married to a wonderful man named Bob, and I have a beautiful daughter named Ashlynne.

In order to give you some insight into what your autistic students might need in the classroom, I’d like to share my memories of my years in elementary school.

I was raised in Brookline, Massachusetts. I attended the Edith C. Baker School, a public elementary school, from the second grade through the eighth grade.

I had symptoms of autism, but no one picked up on them.

As a child, I was extremely sensitive to sensory stimuli, especially sound, and I felt the emotions of the people around me acutely.

Fascination and alarm: Those two words describe the nature of most of my responses to the physical and emotional world throughout my childhood.

I did not speak a word until I was 2 1/2, but I could read when I was three years old. I taught myself.

As a child, I had great difficulty making eye contact. Even now, when I look into a person’s eyes, I have such a profound experience of the person that I feel his or her soul coming directly at me. When I was a child, looking into the eyes of another person was an overwhelming experience.

My small, very conservative school gave me the structure to indulge my fascination with the world while protecting me from the kinds of experiences that inflamed my anxiety.

At school, we had many, many rules, and they governed nearly every aspect of the school day. We had rules for how to enter the cafeteria, with whom to sit, and at which table. We had rules for how to form a line and use the proper side of the stairway. We had rules for what constituted proper school attire.

The rules created a predictable, structured environment in which I could thrive.

My school environment was very spare and quiet. We did not have all the visual and auditory distractions of today’s world — no iPods, no computers, no cell phones. All of our learning was text-based. For me, it was the perfect environment.

My teachers demanded respect from all of us. And they did an excellent job of returning it. But they were not my friends. They were better than friends. They were allies. The vast majority were kind, patient, and supportive.

My teachers created an environment in which I developed faith in myself. I could never have achieved so much without this solid basis.

As you work with your students, please keep in mind that autism is not intrinsically a condition of deficit, but of overabundance — an overabundance of sensitivity to sensory and emotional phenomena.

I spend every day living with an experience laden with perception. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world, in every detail: color, texture, pattern, and motion.

The intensity and acuity of autistic perception causes many of the behaviors that can be so perplexing to non-autistic people. Stimming is a way to calm our nervous systems, and it serves to block an abundance of input by creating an abundance of output. Concentrating on visual or auditory patterns allows us to bring some measure of control to our perceptions of an overstimulating world.

Living with this level of intense perception is a great deal of work. Please know that your autistic students are working very hard, all the time, to filter and process sensory and emotional information.

It may not look as though they are working hard. Please look beyond what you see to what lies beneath the surface. When you do, you will go a long way toward helping your students succeed.

Thank you so much for taking the time to watch this presentation. Please feel free to contact me through my blog, Journeys with Autism (www.journeyswithautism.com),with any questions you might have.

© 2011 by Rachel Cohen-Rottenberg

37 comments

Questionnaire on Doctor Who and the Autism Spectrum

April 29, 2011 Rachel Community, Spectrum Pride

Over the past year, I’ve become a Whovian, care of my daughter, who loves Doctor Who. We’ve been watching the latest series on Netflix, and we’ve recently started Season Five.

So, imagine my happiness and my surprise when I got the following email from my daughter this morning:

Oh my GOD, Mom, look what I just stumbled upon on Tumblr!

http://jeyradan.com/dw-autism.html

Here’s an article about it:

http://www.combom.co.uk/2011/03/important-questionnaire-about-doctor.html

Michaela Schubert, an Aspie and a PhD student at the Pennsylvania State University of Medicine, is writing a book about Doctor Who and the autism spectrum, and she has a questionnaire she’d like people to fill out. Here is what she has to say:

“I am desperately trying to get as many people as possible to tell me a little about their own experiences with the show. The absolute most important part of a project like this is to get as many different viewpoints as possible.

You don’t have to have seen a lot of it, you don’t have to be familiar with the classic series, you don’t have to have a particular spectrum condition (or any diagnosis at all). Any input at all is welcomed and greatly appreciated.”

So if you’ve watched the show, please consider filling out her questionnaire. And, if you feel so inclined, please post information about it on your blogs and other social media.

It looks like she’ll be writing a fascinating book.

© 2011 by Rachel Cohen-Rottenberg

15 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.

© 2011 by Rachel Cohen-Rottenberg

38 comments

Following the Path with Heart

April 26, 2011 Rachel Education, Parenting

It’s been a very intense weekend in our house, in a very good way: my daughter Ashlynne made her final decision about which college she wants to attend, and she finished her senior project, the culmination of a year’s worth of work.

Ash applied to seven colleges and was accepted into six of them. After much thought, and angst, and worry, and indecision, she finally went with her first choice all along, and accepted admission into the University of California at Santa Cruz.

Huzzah!

I am so overjoyed for her. She went out to visit UC Santa Cruz this past November, and she loved it there. She loved the ocean, the redwoods, the beauty of the campus, the classes she attended, the people she met, and the town itself. But since she had offers from other colleges, she wasn’t sure on what basis to make a decision. What ultimately became clear was that Ash needed to follow her heart.

As we worked through the decision-making process, I shared with her how I ended up at UC Berkeley. My first two years of college, I went to Princeton. I had worked, and worked, and worked so hard to get into an Ivy League school. I had overachieved like crazy. I had studied for my SATs and my college boards until my eyes had nearly fallen out. I had read all the books about the different colleges. And I had worried so much, for so long, about making the right choice.

Then I went to Princeton, and it was complete disaster in almost every way. Socially, it was a wasteland. Intellectually, I found a troubling lack of curiosity. Ethnically, I encountered way too much anti-Semitism. And geographically, I was stuck a tiny little affluent town, and I wanted to see the wider world.

At the end of my sophomore year, I went out to Berkeley with my roommate, whose family lived there. The visit was only supposed to last a summer, but as soon as I crossed the Sierras from Nevada to California, it felt like a homecoming. At the end of the summer, I went back to Princeton for three weeks, but my heart was calling out for the Bay Area, and I knew it was the place I was supposed to be. So I went back to California, worked some minimum wage jobs, paid my way, made some friends, smoked some cigarettes, drank some espresso, and found myself a home. For awhile, I never even considered going back to school.

After a year and a half, though, I was bored to death serving up fries and wiping up runny noses (no, not on the same day), so I decided to go back to college. Unlike the first time, I didn’t fret over it. I didn’t consult lots of books about available programs. And I didn’t wonder whether I was about to screw up my entire life by making the wrong decision.

All I wanted to do was to get a college degree. So I looked around, noticed that there was this university called UC Berkeley, about which I knew nothing, right in the neighborhood, and I thought, “Hey, I’ll apply there!” And I did, and I had a great experience there.

Everything that’s come into my life after that point has come about because I followed my heart and went to college in a place I loved. I loved it so much there that I got a master’s degree as well, which led to the job at which I met my first husband, which led to Ashlynne’s coming into the world. And having Ashlynne has brought about so many decisions that have landed us all in the good place we are today. I followed my own path, and so much has come of it — including sitting in Ashlynne’s room, working out which place she wanted to go to school, and encouraging her to dream her dreams.

Ashlynne has always felt that Santa Cruz was the place she wanted to be, for so many reasons that go above and beyond the university itself. So even if the place doesn’t measure up to her dream of it (and what place does?), something good will come of it, I am sure. It will propel her on the path that’s hers, the path with heart.

I’m very proud of my kid and all she’s accomplished. But her accomplishments pale in comparison to who she is as a person. She’s kind, she’s sensitive, she’s ethical, she’s compassionate, and she’s a loyal and caring friend. Those are the things I most value about her, and I’m so proud of all the ways in which she brings light and beauty into the lives of the people around her.

© 2011 by Rachel Cohen-Rottenberg

30 comments

A Breathtakingly Beautiful View of Existence

April 23, 2011 Rachel Videos

My daughter recently led me to this video, which was filmed on El Teide, Spain’s highest mountain, between April 4th and April 11th, 2011. Every time I watch, I am just in awe.

The Mountain from Terje Sorgjerd on Vimeo.

For more information about the photographer, Terje Sorgjerd, and his process of making the video, click on the The Mountain link.

© 2011 by Rachel Cohen-Rottenberg

8 comments

And Now For Something Completely Different

April 22, 2011 Rachel Honesty, Videos

If you’re like me — a print freak and poetry lover born to speak your mind — this video is for you. The poem is by Taylor Mali (www.taylormali.com).

Typography from Ronnie Bruce on Vimeo.

(If you want to watch the video a second time, click on the Typography link to go to Vimeo. Or you can just refresh the page.)

Every time I watch this piece, I just, you know, crack up laughing? And then, by the end, I so totally feel like cheering!

© 2011 by Rachel Cohen-Rottenberg

21 comments

Responding to Old-Fashioned Anti-Semitism

April 21, 2011 Rachel Community, Empathy, Judaism and Jewish Life

I’ve lived a charmed life. I really have. I’ve encountered very little anti-Semitism directed at me personally. Of course, I take any anti-Semitism (and any other form of hatred) personally, but I’ve rarely found myself the object of it. The last time I did, I was at Princeton, and I was still in my teens.

Imagine my surprise, then, to find myself the target of an anti-Semitic slur on another blog — a blog I’ve always enjoyed. It came out of the blue, and the blog owner’s response to it was as offensive to me as the original slur. I’m writing about it partly because it’s an important issue, and partly because I want to find out whether others have the same level of feeling that I do about such things. So, I’d really appreciate it if you’d share your feelings about it.

Here’s the story: Another blogger wrote a short post about Simon Baron-Cohen, calling him out for his tired theories about how autistics lack empathy, and asking him to have some empathy for us. Of course, you all know that this issue is near and dear to my heart, so I posted a supportive comment that began “I totally love you,” agreeing with her on all points. Then, I went about my business.

A day later or so, I tuned in to see whether anyone else had weighed in on the issue and found the following comment from another reader:

“As Professor Grandin wrote in one of her recent books, as my Mom (from Mississippi) and Dad (from Georgia) were careful to point out to me when I was young, manners are very important, and even more so when dealing with strangers.

I am afraid that the patrimony of the person in Cambridge with the hyphenated surname might be starting to show a bit, there. Call that a blood libel if you like, Rachel. (Had you let my comment on your blog stand, and answered it, I don’t think I would be writing this one.)

Gentile White guys have feelings too, even though they might be somewhat autistic.”

My first response was “Whoa fuckin’ whoa! Did that comment say what I think it said?” That’s usually how I react when people say this sort of stuff: I question my own stellar reading comprehension. Obviously, I’d seen it all before, but in my shock, I went to disbelief.

The disbelief wore off pretty quickly, though, and then I got to work on a response. Before I share some of that response, let me unpack all the levels of the comment for you:

1. The commenter is assigning Simon Baron-Cohen’s theories of impaired autistic empathy to his being Jewish.

2. The commenter says he made this comment because he’s angry that a comment he wrote concerning my post about Sarah Palin, and her use of the term “blood libel,” did not appear on my blog, and I did not respond to it. I published the Palin post back in January. (January, people!) And I never saw the comment in question.

3. As many of you might know, the blood libel was a medieval anti-Semitic myth to the effect that Jews use the blood of Christian children to bake matzah for Passover. It’s been responsible for the persecution and murder of countless numbers of Jews throughout the centuries. In fact, there is evidence that it set the stage for the Holocaust. In other words, it’s not a term you throw around for fun.

Not only did this guy throw it around for fun, but he also threw it around for fun just before Passover. Oy.

4. By referring to Simon Baron-Cohen’s Jewish patrimony, he is referring to the second portion of his hyphenated name, which happens to be the name I share with the good doctor. I took the name Cohen and added it to my maiden name back in 1981, in memory of my grandparents, who had both died when I was a teenager, and who were singlehandedly responsible for the fact that I survived my childhood, both physically and emotionally. So the name Cohen has very deep emotional and spiritual resonance for me. Putting a stink on it is so not cool with me, you shouldn’t know.

Now, I am not a big fan of Simon Baron-Cohen’s work, as evidenced by my posts here, here, and here. So I’m not defending what the guy says. I’m defending his right — and mine — to be a Jew and be free from anti-Semitic slurs. (You all knew that, I know. It’s kind of obvious. But I figured that just in case your head is spinning, it wouldn’t hurt to be very clear.)

Okay, so. You know moi. I don’t let this kind of thing go without a response. It’s too important. It’s not just about disagreeing. It’s about the fact that saying this kind of thing is destructive, on so many levels, that I feel the need to speak up. So here’s how I responded, in part, to the commenter:

“If you’re referring to my Sarah Palin/blood libel post, I let all comments I saw come through on that one — some with editing (which included editing posts from the right and the left so as to keep the flames low). If your comment didn’t make it through, it’s because I didn’t see it. My spam filter is ridiculously inconsistent, and all kinds of valid stuff gets stuck there all the time. Usually, I catch it, but occasionally, I don’t. I’ve had long-time readers ask me where their comments went, and even though I’d looked carefully through the spam, I hadn’t caught them. It happens. I’m a human being.

In any case, your comment here that SBC’s Jewish patrimony aligns with his lack of manners is really beyond the pale. And to justify it by saying that it’s my error that caused you to engage in anti-Semitism is absolutely astonishing. You are responsible for what you say. You don’t get to indulge in an anti-Semitic barb and blame it on someone else. At least, not in my ethical universe.

My Jewish parents taught me better, and I’m damned proud of it. If any of my readers said something similar about conservative white guys, I would never publish it. Ever. Political disagreement? Yes. Attacking an entire group? No.

If you’d like to apologize for your anti-Semitic statement, fine. If you don’t, I wouldn’t let you post a thing on my blog, any more than I’d let someone who makes unapologetic slurs against conservative Christians onto my blog. And yes, I’ve gotten some, and no, they’ve never seen the light of day.”

At that point, I decided that, in the absence of an apology, I’d stop the interaction. I had had my say, and that was fine.

But the blog owner’s responses were less than helpful and, in certain ways, just as troubling as the original comment. First, she said that she was letting through the comment in the interests of free speech, but that she didn’t “want a race war” breaking out on her blog. On the free speech issue, fair enough. It’s her blog, and if she wants to let that stuff through, she gets to. But her comment about a race war breaking out implies that I was about to respond in kind — that is, that I’d attack the commenter for being a conservative white guy in the same way that he’d attacked me for a being a liberal Jewish woman. I decided to let it go, however, in the interest of seeing whether anyone would ante up, kick in, and become the least little bit outraged.

After I left my response to the original comment, this was the blog owner’s reply:

“I hope I have not upset anyone. I do not approve of racism and those other bad ‘isms’, and I try to avoid being a racist myself, but I do recognize that stereotypes can at times be a useful short-cut in decision making, including racial and ethnic stereotypes.”

Arghh! Where to start? My response:

1. I vehemently disagreed that racial and ethnic stereotypes can be useful.

2. I suggested that slurring Simon Baron-Cohen over being Jewish was not a useful short-cut to anything.

3. I came on the blog to be supportive, and ended up becoming the target of an anti-Semitic slur. I sure hoped that someone felt upset about that. I mean, besides me.

4. I’d be taking my comments and support elsewhere.

The response did not address any of my points at all. In part, it read:

“When I’m at the park do I avoid settling to read a book at the seats in the corner of the park where the Aboriginal people like to hang out? You bet I do! Do I pretend that I didn’t hear when indigenous people beg for money in the street, because I believe they probably waste money on booze and drugs? Damn right, I know what an indigenous person who is totally smashed looks like! Do I avoid discussing issues to do with Palestinian people with most people of a certain other ethnicity? You bet I do! Do I know that I’m risking being branded a Holocaust denier when I question the truth of a Nazi atrocity anecdote that a Jewish professor has written about lately in a number of different publications? Damn right I do! Did the qualified university-teaching surgeon that I asked about this anecdote reply that he thought it ‘Sounds like nonsense to me’? Yes indeed, he replied with those exact words! Do I believe that Google and the Australian Broadcasting Commission have both censored questioning of this very sus anecdote? Yes I do! Do I think that is an unjustified infringement of free speech and scientific enquiry? Yes I do!”

I don’t have the time at the moment to state the obvious on each of these points, but let’s just say that absolutely nothing in this paragraph has to do with ethnic stereotyping at all. Ethnic stereotyping, for those who don’t get the concept, has to do with saying “So-and-so did this highly objectionable thing, or so-and-so is about to do this highly objectionable thing, or so-and-so has this highly objectionable trait, because so-and-so is a member of [insert ethnic group here].” So, if I don’t give money to an African-American guy who happens to be drunk, because I know there’s a good chance that he’ll spend the money on getting more drunk, that is not ethnic stereotyping. If, however, I don’t give money to the guy because of the color of his skin, that’s racism. And if I say to myself, “He’s drunk because he’s black,” that’s ethnic stereotyping. (And, by the by, I’ve refused to give money to people who are drunk, but I’ve never refused on the basis of ethnicity, or assumed that they were drunk on the basis of ethnicity.)

And just to be clear: Stereotyping does not include making sensible, nuanced decisions to stay away from sensitive topics with individuals whom you know to be incapable of rational discussion. I’m not going to get into a long discussion with a Muslim who thinks that the blood libel is a reflection of reality, or a white guy who is convinced that the Holocaust did not happen, or a Jew who believes that all Muslims are terrorists, or a liberal who thinks that all conservative Christians hate women and want to kill abortion doctors. I’ll speak out against such idiocy, but I’m not going to have a useless discussion with someone whose mind is officially closed. That’s not called stereotyping. That’s called making the best use of my time on earth. I will, however, engage in debate with any reasonable Muslim, Jew, Christian, staunch conservative, bleeding-heart liberal, or anyone else, so long as that person keeps it civil, I have sufficient time and energy, and the subject interests me.

As for the blogger’s questioning an anecdote regarding a Nazi atrocity, suffice it to say that, having been the recipient of anti-Semitism on her blog, I didn’t feel that she’d exactly chosen the optimal moment to raise the issue. I have no idea what she’s talking about, and at the moment, I don’t care to know, because it’s an utter distraction from the question at hand. I mean, if any Muslim who posts to my blog were the recipient of an anti-Muslim slur that had somehow slipped in under my radar, I wouldn’t start talking about how difficult it is to participate as a Jew in a reasonable discussion on the Internet about the Israeli-Palestinian conflict. It is difficult, but that’s my difficulty, and not my reader’s problem. All of my attention would be focused on the fact that someone had come onto my blog in good faith and experienced an ethnic slur. We can have a discussion about the other issues later.

And, just so you all know, when I ran my Sarah Palin post in January, I spent a good deal of time editing comments from both a conservative Jewish woman and a liberal Muslim man, so that none of my Jewish or Muslim readers, of any political persuasion, would feel trashed on my blog. I do my best to practice what I preach.

It’s my belief that, as autistic people, we should be at the forefront of expressing outrage at any form of ethnic slurs or stereotyping. After all, we have to deal with stereotypes and slurs against us on a regular basis. In my view, it’s all equally destructive, and it’s all equally our responsibility, as human beings, to speak up against it.

© 2011 by Rachel Cohen-Rottenberg

57 comments

An Open Letter to Robert MacNeil Regarding PBS’ Autism Now Series

April 15, 2011 Rachel Ableism

Dear Mr. MacNeil,

It has come to my attention that you are spreading dehumanizing stereotypes about us. In an interview to promote your series, Autism Now (formerly Autism Today), you said the following about autism:

“It delays the most — delays or impairs for life — the most human thing we have, which is our ability to look into each others eyes and feel that other person’s existence and what might be going on in their mind, and to empathize with them. That is denied — largely denied — to children with autism.”

I remember you from the MacNeil-Lehrer News Hour. You always seemed to be an intelligent, nuanced, thoughtful human being. But then again, because I’m autistic, I must have been incapable of understanding what was going on in your mind all those years. Largely because of your statement regarding my supposed impairments in this area, I am beginning to doubt my previous judgment about you.

Your thinking about autism is anything but intelligent, nuanced, or thoughtful. It is based on the most pernicious misinformation and stereotypes our culture has to offer about the lives, hearts, and experiences of autistic people. I have been autistic for every moment of my 52 years on this earth and, believe me, I feel the existence of other people so acutely that I have to spend a good portion of my time alone. I walk into a room, and I feel the emotions of everyone there. My empathy is off the charts. And I am very well-skilled at figuring out all the possibilities for what might be going on in the mind of another person.

If I were less than fully capable of feeling another person’s existence, understanding what might be happening in another person’s mind, or empathizing with another human soul, I would not have a wonderful marriage to a loving, gentle, intelligent neurotypical man. Nor would I have a beautiful 18-year-old neurotypical daughter who tells me that I am the best mom she could ever ask for. How many teenagers say that about their parents? You don’t get there by failing to empathize with your child.

But don’t just take it from me. Ask any autistic person, on any portion of the spectrum, about the intensity with which he or she experiences other human beings, and you will hear much the same story.

What’s that? You didn’t interview any autistic people for your series?

What?

Okay, let me get this straight: You are doing a series on a disability without ever having talked to anyone who actually has that disability.

I’m sorry, but has something changed in the journalistic profession? If you did a series on understanding people who use wheelchairs, would you talk only to their parents? To their doctors? To researchers? Or would you actually talk to the people using the wheelchairs so as to, you know, do a halfway decent job of helping your viewers understand their lives and experiences?

I don’t know. Maybe you wouldn’t. Maybe you think that disabled people have nothing to say. You clearly feel that way about autistic people.

But why? Well, I suppose that if you’ve already decided that we suffer an impairment in “the most human thing we have” (and “we” appears to refer only to non-autistic people since, clearly, actual autistic people wouldn’t actually be reading anything you have to say, much less understanding it or having feelings about it), the whole idea of talking to us kind of goes out the window, doesn’t it? I mean, who wants to talk to someone whose humanity is sub-par?

Are you even aware that many of us can speak? Yes, we can. We speak using our vocal chords, our computers, our body language, our affection, and our basic humanity.

But clearly, it’s never occurred to you to listen.

If you don’t want to hear us, if you want to continue living in utter ignorance of our thoughts and our lives, that is your right, but please, consider the following: What kind of a world are you creating for your autistic grandson? Do you want him to live in a world in which no one listens to him? In which people consider his humanity to be less than theirs? In which people believe that he has no feelings, no empathy, no understanding of others? In which people don’t even bother to find a way to communicate with him, because it just doesn’t seem worth it?

What impact will the attitudes betrayed by your words have upon his happiness? Upon his ability to receive appropriate medical care? Upon his ability to make friends, to feel safe, and to develop self-respect? Will his civil and human rights be protected? Will he be treated with kindness?

Think about the world that you are helping to create and perpetuate. And believe me when I say that I know that world well, because I’ve lived in it for over half a century.

From where I sit, anyone who can’t treat another human being — any human being — as though that person has something to say and a right to be heard is not living up to his or her humanity.

Look at us. Listen to us. Feel our existence. Think about what might be going on in our hearts and minds. And for God’s sake, empathize with us.

You’ll be building a better world for everyone.

Sincerely yours,
Rachel Cohen-Rottenberg

© 2011 by Rachel Cohen-Rottenberg

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Guest Posting Today at Yeah. Good Times.

April 14, 2011 Rachel Guest Posts

I am guest posting today at the illustrious Jillsmo’s illustrious blog Yeah. Good Times. My piece is called We Are Not The Enemy.

Jilllsmo welcomes all comers, and I’d love it if you’d drop by and comment!

2 comments

Guest Post Series: Widening the Disability Perspective

April 10, 2011 Rachel Guest Posts

This month’s post in our series comes from bbsmum, an insightful writer who blogs with honesty and great good humor at Mum Accepting Autism. Her son BB is a young man with autism and severe learning disabilities.

Why Inclusion Isn’t Always the Best Choice

My son BB is 18 years old. I have read that he has had second-class opportunities. That he is unlikely to reach his potential. That he was betrayed by a decision I took when he was 4.

Who made this judgement? Some bigot? No, this attitude comes from some parents and some advocates within the disability community. What was the decision that they think blighted his life? It was a decision I have no regrets about whatsoever — the choice to send him to a special school.

A provocative statement? Maybe. But everywhere I look, parents and advocates are clamouring for inclusive education and denigrating the value of specialist provision, or at best grudgingly accepting it as a stepping-stone into integrated lessons. When Ari Ne’eman (http://www.wrongplanet.net/article367.html) describes special education as “segregated” (now that’s provocative language), the prejudice about special schools makes me question why the idea of mainstream education is held up so unquestioningly as the ideal to aspire to.

Firstly, a confession: I didn’t exactly choose a special school. We were never offered mainstream education for BB and rightly so. There is no aide, no accommodation, no help, no lesson differentiation that would have made the mainstream curriculum understandable to BB, and the gap between his understanding and that of his peers would have grown wider with time.

Instead, he went to a local school for children with severe, complex, or profound cognitive disabilities. It’s perfect. The staffing ratio is 1:2. The staff are there because they have chosen to work with our children. The curriculum isn’t adapted for him; it’s designed for him. He has been given a range of experiences both in school and on community outings that rival anything a mainstream school could offer. For fourteen years, in two schools (we moved house, so BB had to change schools), he has been surrounded by care and expertise.

Sounds good, right? So why are parents and disability activists alike so convinced that special schools are second best? I fully understand that for many disabled people, the memory of a time when they were deemed incapable of benefiting from mainstream education is still fresh, and the wounds are still raw. I’m truly sorry about that. But to push the pendulum the other way and demand that all children with disabilities should be educated in mainstream settings denies the obvious truth that in education one size does not fit all.

I used to work in a preschool for children with special needs. The Educational Psychologist would come in and say things like “X will cope in mainstream, Y will cope in mainstream with a 1:1,” and so on, and I used to think “Cope? Is that what you want for a child’s education? To cope?” I wanted so much more for BB. I wanted him to thrive, to feel safe, to grow in confidence — not to get by just ‘coping’.

Here’s a thought: If you’re a parent trying to get your child educated in mainstream, or a disability advocate saying that mainstream education is preferable to special schools, just stop for a moment and ask yourself why. Is it because the child will emerge with more qualifications? This would seem a reasonable basis for argument, but most pro-mainstream folk are actually a little unsure of the statistics, because that doesn’t seem to be the point. For them, the crux of the matter is a philosophical one. Disabled children should be with non-disabled children.

A-ha! Now we’ve got to it. Why? Why is sitting in a classroom full of typical kids preferable to sitting in a classroom full of autistic kids?

Don’t look at me. I don’t know.

All I know is how it feels. (Please note, I am not describing anyone’s intentions or beliefs, merely how this makes me feel). It feels like people are saying “Inclusive education is best. What a shame your child can only cope with second best.” It feels like people aren’t interested in the achievements BB made because of the supportive environment of a special school. It feels like people regret the need for special schools to exist, which means they are regretting the existence of those who need them.

Where does this leave the ones who can’t take part? Who will never keep up?

It feels like people are saying that it’s better to be a different sort of disabled child.

Here’s another thought for those of you who champion inclusive education. Stand with those of us who need something a bit different, and campaign for educational choice instead. Mainstream for those who want it. Good quality special schools for those who want it. Individual needs first, ideology second. No privileging one type of education over another.

If it’s right for the child, special school is a different choice, not an inferior one.

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