Archive for Community

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

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

How My Readers Find My Blog

April 4, 2011 Rachel Community

I don’t often look at my Google Analytics stats, but recently, I though it might be interesting to find out the search terms that people use to find my blog. Most of the time, the terms entered are a variation of “journeys autism” or “rachel journeys autism,” but some of the less common ones are a lot of fun. Here are my top ten favorites:

10. she’s a loud one, which is also kinda cool
I have absolutely no idea how someone found my blog using these words, but I love the sentiment. While I’m generally soft-spoken, I can occasionally be a loud person, and I’m happy beyond words that at least one person thinks that’s a good thing.

9. sensory overload blog
After reading this one, I’m thinking of changing the name of my blog to “Adventures in Sensory Overload.” Then again, I might lose readers if I do that; I’m not sure that I’d seek out a blog by that name. Too overwhelming. Never mind. I need to go lie down.

8. why don’t people with aspergers want to get drivers licenses
I was not aware of this particular stereotype research finding. Though I can’t speak for other Aspies, I was quite excited about getting my driver’s license, back when I drove a 1966 VW Squareback (that I had to roll down the hill to start — and did I mention that you could see daylight when you put your hand through the rusted-out bottom while trying to change the battery?).

7. aspies who hate driving
Not me. I used to love driving. Absolutely loved it. I’d drive for hours and hours at a time. Then, I got tired of it, but I wouldn’t say I hate driving. I don’t love it as I once did, but I enjoy getting into the car when I need to get somewhere and it’s too far to walk.

6. big daddy autism photos
This is just so unfair. I know that Jillsmo thinks so, too, since someone found her blog while searching for Big Daddy Autism as well. Sigh.

5. jewish autism
Jewish cuisine. Jewish theology. Jewish humor. And now, Jewish autism. Maybe the subject for a new book?

4. is gabrielle giffords going to be autistic
I see how this search string got someone to my blog, since Gabrielle Giffords is my sixth cousin and I’m autistic. However, I’m alternately amused and horrified that someone would even ask the question.

3. monologue of an abused disabled child
Mon blog? Moi?

2. are empaths often on the autism spectrum
Yes, very definitely. I can feel it.

1. society for quiet and gentle people
Where? How do I get there? Are there solar-heated houses for sale? Is the weather good?

Oh, for God’s sake. It doesn’t matter. I’m going. See you there!

© 2011 by Rachel Cohen-Rottenberg

24 comments

Audiology and Neurology

February 28, 2011 Rachel Communication, Community, Disabilities, Doctors, Hearing

I had my follow-up audiology assessment on February 15, and my follow-up appointment with a neurologist this morning. I don’t have much to report in terms of answers, but I’m continuing to find insight along the way.

February 15 audiology assessment: I walked to the audiology center, which is a mile or so from my house, and I was in a state of extreme resistance the entire way. I just didn’t want to go through the testing again. It wasn’t an intellectual resistance. In my head, I was interested in knowing how things would come out. The resistance was physical and instinctive. If I were a little kid, I probably would have said, “I just don’t wanna! Please? Can’t we go home?” But I’m an adult, so I kept on walking.

There are only two aspects of my audiology assessments that I like: seeing Beth Ann (my audiologist), and sitting in the sound-proof room she puts me in for the testing.

Beth Ann is a wonderful, friendly, quiet-spoken person who seems to talk at just the right tone and pace for me. She talks very little, too, which makes her very easy to be around. She says what’s needed, and then she gets down to business. She says that she likes when I come in for testing because she gets to use her normal voice; most of her patients are elderly people who are hard of hearing, and she tends to have to speak very loudly most of the time.

And the sound-proof booth? I want one. So. Very. Much.

At this particular appoinment, Beth Ann didn’t even bother trying to talk to me in her office. She did the pre- and post-assessment interviews in the sound-proof room. She figured I’d have an easier time of it. Nice person, eh? I really appreciated the gesture.

But God, did I hate the testing! My body was in a state of major tension the entire time. I just couldn’t wait to get out of there. I saw, once again, that verbal processing—any verbal processing—is very difficult, very tiring, and in some ways, very unnatural for me. According to the latest assessment, some of my scores have gone down, and one went up slightly. Here’s the breakdown of scores since my first assessment in July of 2010:

Frequency Patterns (pattern matching)
July, 2010: Right: 100%, Left: 100%
November, 2010: Right: 100%, Left: 100%
February, 2011: Right: 100%, Left: 100%

Compressed Speech (fast speech)
July, 2010: Right: 52%, Left: 48%
November, 2010: Right: 52%, Left: 48%
February, 2011: Right: 36%, Left: 36%

Speech in Noise
July, 2010: Right: 68%, Left: 80%
November, 2010: Right: 30%, Left: 20%
February, 2011: Right: 36%, Left: 40%

Dichotic Digits (integration of sound binaurally)
July, 2010: Right: 93%, Left: 90%
November, 2010: Right: 65%, Left: 28%
February, 2011: Right: 50%, Left: 25%

Except for my apparently ceaseless ability to do pattern matching, all of my scores are still in the Poor range. The good news is that they haven’t dropped as significantly as they did between July and November of last year, and I’m grateful for that. No one has ever suggested that my hearing will ever be normal, so I didn’t go in expecting miracles.

After the testing, Beth Ann asked whether I had any questions or concerns. My mind was kind of blank at that point, except for fact that I was cognizant of the huge enchilada in the room—the huge enchilada that is so large and so ever-present that I often can’t even register that it’s there.

So, I said, “Yes, I have a concern. How am I supposed to live my life this way?”

It wasn’t as pitiful as it sounds. I didn’t mean, “How am I supposed to get up in the morning?” I meant, “I don’t have a road map here. I do my best to understand what’s going on with my hearing. I take adaptive measures. I advocate for myself. But I feel like I’m doing it in a vacuum. If I were Deaf, I’d have a community to guide me. But I’m completely on my own here, and it’s very difficult.”

She was very kind, and she said that she’d talk with some people at Austine (the local school for the Deaf and Hard of Hearing) and see whether there might be any services or guidance for me. Later on, it occurred to me that there’s a crucial service that she can help me find: counseling from a Deaf practitioner. I need emotional support from someone who isn’t going to give me well-intentioned but useless advice. My last therapist told me that, of course, people wouldn’t approach me because, by blocking my ears, I was communicating that I didn’t want to communicate. I tried to explain to him that, um, no, I was blocking my ears to protect them, and that I wasn’t communicating a thing, except that I have a problem with my hearing. You can guess how that went. It was like saying, “You know, sometimes a cigar is just a cigar,” and being told I was in denial.

I don’t need to listen to that kind of thing anymore. In fact, what I need is a therapist who can help me deal with the exhausting, mind-numbing, crazy-making cluelessness implied by that kind of remark.

And I need someone with whom I can sit and text during appointments and not talk at all. I remember when I used to see my Deaf counselor at Voc Rehab. We’d sign a little and then write back and forth, or use the Ubi-Duo. After awhile, finding employment became secondary to just being in the same room with someone who wasn’t going to exhaust me. It was so peaceful. I came out feeling full instead of empty.

When I emailed Beth Ann about my idea of finding a Deaf therapist, she wrote me back and said, “Wow! I was just thinking the same thing!”

I’ll keep you posted about my progress in this area.

Today’s neurology appointment: Back in November, when my audiology scores plummeted, my audiologist strongly suggested that I see a neurologist “to get to the bottom of it.” I got an MRI right away, which showed nothing wrong. I also scheduled an appointment at Dartmouth-Hitchcock for February 2 (the first available one), but there was a blizzard that day and driving was out of the question. So I decided to see someone in town, figuring that even in a blizzard, I could walk.

The neurologist was lovely. I had gone expecting some high-powered, well-dressed doctor who would rush me mercilessly through the appointment. Instead, she was a very calm older woman dressed in a button-down shirt and corduroy pants that were balding in several spots, and she let me take my time. She did a bunch of testing and basically said, “I don’t see a thing wrong with you—except for the auditory and other sensory issues, that is.” My core muscle strength is good, my coordination is good, my balance is good, and nothing seems to be structurally wrong. She ordered some bloodwork to rule out autoimmune conditions that can lead to hearing loss, but she said that she expects that everything will come back normal.

Basically, she couldn’t explain the sudden drop, but after hearing about my father’s auditory processing and its extreme similarity to mine, she said that it’s probably all genetic. She gave me the option of going to an ENT clinic in Boston, but when I asked whether she thought it was actually worth it to shlep to Boston for more testing, she said, “I’m not sure. Let me think about that.”

I finally said to her, “You know, whatever is causing the drop-off, no one has ever breathed a word to me about it getting better. I think it’s good that we rule out really serious stuff that could be causing it, but if it’s something otherwise benign, that can’t be changed, what’s the point? I’ve accepted that my hearing is the way it is. I just need some support for dealing with it.”

She seemed to understand what I was talking about, and we agreed to have another appointment in a month to discuss things further. I got the bloodwork done (after having to flee the building for several minutes because they decided to test the alarm system while I was waiting), and then I came home even more convinced that my next order of business is not medical, but support-oriented.

I’ve got to get some support from a therapist for living with a disability and all the nonsense that the world throws at me about it—including all the ableist stuff I’ve still got to weed out of my own head. And I need some support for becoming more assertive and confident about the adaptive measures I need to take and the ways in which I need to advocate for them. I can’t continue to go this alone. I mean, actually, I can if I have to, and it’s good to know that I’m capable of doing so, but I really shouldn’t have to.

It’s all a work in progress. More later, as the work progresses.

© 2011 by Rachel Cohen-Rottenberg

18 comments

Holding the Space for Others

February 13, 2011 Rachel Community, Happiness, Spiritual Beliefs

I’ve been having a crisis, of late, about my place in world. Kind of a big, high-flying topic, I know, but I seem to have somehow brought it down to earth today.

Whenever I try to explain the crisis, I have difficulty finding words that don’t make me look like a total schmuck. So I’ll just say it outright: I don’t feel particularly important in the world.

Now, before y’all start telling me that I am important, let me just stop you in your tracks and say, I know I am. We all are. We all have a purpose in life that no one else can fulfill. But it’s the definition of important that’s changed drastically for me, and the difficulty of letting go of the old definition is a measure of how completely bankrupt it really was.

The old definition had to do with achievement and recognition. For me, it was never one or the other, but both. I’m sorely tempted to list out all my achievements for you, and all the ways I’ve been recognized for them, but that’s the problem. I want to list them out, to be impressive, to say, “Look at me! Look at me! See how important I was…I mean, am!” But I won’t. Let’s just summarize and say that it has to do with my education and my work life, and leave it at that.

And all that is largely in the past. I want to get another master’s degree, partly for the sense of accomplishment, but mainly because there are a lot of things I’d like to study, and a master’s program would be a good structure in which to study them. But recognition? What’s it going to buy me, exactly? What do I really want?

What I want is some peace in the midst of all of the storms. I want to be able to have my outrage, speak my piece, and then have my peace. I want to fight the good fight and, whether I win or lose, know that I’ve won, because I did what was right. And I want to just live my life, and not worry about how I’ll deal with whatever the next storm happens to be.

Some time ago, I went to see a healer who told me that every soul brings into this life an error in perception that must be healed. I’m not so sure about that—I mean, how can one be sure about spiritual matters?—but I was willing to listen and see whether there might be a truth in there for me to pursue. She then proceeded to tell me that my soul’s error was to believe that I could not handle whatever came my way.

She nailed it. She absolutely nailed it. I don’t know whether I’ve accumulated this error over several lifetimes, or I just inherited this fear from my parents, or what, but I really don’t care. Somehow, I’ve gone after achievement and recognition all my life because I thought that it would protect me against all those difficulties that other people have to go through.

Not me. Oh, no, no. I’ve had enough difficulty for one life, thanks. Other people can take it from here. Not too much entitlement in my thinking there, eh?

I seem to have gotten past that foolish idea. Or, better said, life has seen to it that I get past that foolish idea. I’ve been through a lot of difficulty over the past 10 years. I feel like I’ve been stripped down to my essentials. It wasn’t anything I could have avoided. I didn’t cause it, and I couldn’t cure it. It all just happened. It’s as though life said, “Welcome to the human race, Rachel. Nice to see you’ve finally arrived.”

So here I am, needing to find another way to have peace. I know that part of having peace is to walk a spiritual path, and it’s been a long time since I’ve done that mindfully. But for me, having peace means more than that. It means finding purpose, and in the absence of all the Big Important Things I used to do in the world, I’ve been wondering what on earth that purpose could be. And then I started tripping over it, again and again, until I couldn’t miss it.

It started this past Thanksgiving. My husband was spending the day with his kids in Colrain, and I was spending the day with a friend. The plan was to get together at my house, have some food, and watch a show. I wasn’t planning anything grand, but I offered to make us dinner. My friend has a number of sensory sensitivities regarding smell and taste, and she warned me that, whatever I might make, she might very well not be able to to eat it. She said that she’s used to having to bring her own food, and that I shouldn’t feel badly if she couldn’t eat mine.

She clearly felt worried that I’d be feel insulted or annoyed, so I let her know that it was totally fine, and that since I was going to make myself a nice dinner, I’d just make double, and she could have some if she wanted to. So, Thanksgiving came, and I made some chicken and potatoes. I fixed it in a way that she liked, and we watched a movie while it was cooking. When it was time to eat, we came down to the kitchen, and I brought the food into the dining room. I was yacking about something or other, when I looked up and saw my friend frozen at the threshold of the dining room, looking really scared and upset.

I asked what was wrong, and she said she felt embarrassed, but somehow, she just couldn’t look at the piece of chicken on the bone; the thought of it having been a bird was freaking her out. She started to cry. Now, I know for a fact that your average person would have said, “Oh, for goodness’ sake. Don’t be ridiculous! It is a bird. Deal with it!” But I have had people say just those kinds of dismissive, insensitive things to me too many times, and it just isn’t in me to go there.

So I just went over and gave her a hug, and asked what I could do to make the situation work for her. She asked me to take the chicken off the bone and cut up the chicken into small pieces, so I did just that. And while we ate, I blocked her view of my chicken pieces so that she could enjoy her meal. And she was happy. I mean, really, really happy, in a way that only those of us who feel uncomfortable in most places in the world can truly understand. It was a small thing, but no small thing. After all, what’s more important than people feeling safe and respected?

And then I really saw it: This is what I do. I hold safe space for other people. I deserve no credit for it, any more than I deserve credit for being 5’1″, because it’s just instinctive. I know that it’s not in any job description or degree program on the face of the planet, but it’s what I do, and I do it well. It’s the reason that during my daughter’s growing-up years, all the children having difficulties at home ended up gravitating to our house. It’s the reason that my daughter’s best friend is now living with us. Yes, I now have two teenagers, born a little over two weeks apart, living in my house, sharing a room. And I’m ecstatic to be able to do it.

It’s not that there won’t be challenges. Any time you get people living in a house together, there are challenges, but I have a better sense of how to approach them now than I’ve ever had before. Some time ago, on Diane’s blog, we had a discussion about the difficulties we have when our kids go through tough times and we can’t solve things for them. So many of us who are “fix-it” moms have just this problem, and in responding, I realized that I’d already come upon the solution. Here’s what I wrote:

I know that feeling of “needing to be needed” and being the fix-it person. It probably accounts for why my daughter’s entrance into the teenage years provoked such a crisis in me. It’s not as though I had to let go all at once, but at some point, it hit me very hard that she was going through things that either she didn’t want to tell me about, or that I couldn’t fix even when she did. After all those years of intense child-raising and homeschooling, adjusting to her being at school all day and entering that phase of life in which she just didn’t depend on me so much was really hard.

The thing I figured out, which might help here, is that I’m still very much needed, but it’s more like “need in waiting.” I’ve joked for a long time that my job has become to knock on Ash’s door, say “Hi, hon. Need anything? No? Okay. Going now.” And if I just concentrate on those few seconds, it’s awful. I feel obsolete. But then I realized that what I’m really doing is holding the space in the house for her to walk into when she needs support, or wants to talk something out, or wants to share something. It’s a critical job. I think our kids really need us to hold that space in order to feel secure, and it’s pretty much a full-time job, since it entails taking care of ourselves and being present to what’s going on.

It sounds like you and I both need to know what our “job” is at any given time, and sometimes the job is just to create the mother space, you know?

I had no idea when I wrote that how much holding the mother space was just one iteration of what I do, but now it’s clear. The other night, when I met up with some fellow autistics in town, I offered my art studio space to a guy who wants to do some programs with kids on the spectrum. I let him know that the space would be there, and that he didn’t need to feel hesitant about asking for it. I was also able to articulate that, while I can’t do all the face-to-face things in the world I once did, I am very good at organizing things and supporting other people as they find their way. Later on, he told me that a lot of the anxiety he’s been dealing with for awhile began to dissipate after sitting with us and getting that kind of support.

It was music to my ears.

Truth be told, though, it’s kind of a strange job, holding the space. I mean, I keep thinking, I should be engaging more. I should be more assertive. I should, somehow, demand a place in the center, at least some of the time. But that’s all nonsense. I do have a place in the center. We’re all in the center. I don’t need to keep fighting for space with people. When I feel the need to compete for space, I’ve stopped creating spaciousness, and that’s what I need to do.

I don’t need to have a big physical space to do it, either. It can happen anywhere, and it does.

But I worry, sometimes, about who will hold the space for me when I need it. And then I think, I will. And my husband will. And my daughter will. And my friends will. And you all will, because you all do.

© 2011 by Rachel Cohen-Rottenberg

38 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?

© 2011 by Rachel Cohen-Rottenberg

20 comments

Welcome Among Us, My Friend!

January 12, 2011 Rachel Community, Friendship

I’ve known Isabel for over 20 years. We met when I was living in California and, even though we haven’t seen each other in a long time, we’ve kept in touch.

Several months ago, Isabel started reading my blog, and a great many things started to make sense to her about her own experience. She started having those “Aha!” moments that so many of us adult Autists have when we read about one another’s lives. And, like so many of us, she started reading widely and deeply about autism until she became convinced that she’d found the key to a great many of the challenges and mysteries of her life.

Recently, Isabel’s insights were confirmed by an “official” assessment. When I logged in this morning, I found the following comment on an earlier post, which I’m sharing with her permission:

Rachel, just letting you know that the specialist yesterday did diagnose me with Aspergers/autistic (not sure what exact terminology she will use in the written assessment). I met with her 3 times, filled out lots of questionnaires, took some “thinking” tests. But she also did spend time interviewing me about my life now and in the past. She said something along the lines that throughout my life, I used my intelligence and problem solving skills and inclinations to figure out how to be social (how to smile in public, how to make eye contact, how to respond when someone says “how are you”). I always thought everyone did that! I thought we all were thinking like that all the time. I guess not. I guess some people don’t have to work so hard at it. Reflecting on all this now I feel like I just want to rest from it all, take a long rest.

I feel good about this, although I also know that I still want to and need to figure out what this means in terms of what I need to do and what I need to ask for from those in my life, in my work situation, etc. I also feel that it will be different after I see the written assessment. There are certain things I can’t move forward on until I have that.

I want to thank you again. What a difference you have made in my life. I want to thank you and all the other bloggers out there, all the people with YouTubes about Aspergers and Autism, all the books and websites. You opened this door for me that I did not know was there. After I walked through it, I have discovered this alternate world, with myriad inhabitants, realities, paths, many different rooms, many open fields. A world that I thought was only in my head. It’s out there, it really exists.

I’m overjoyed that you’ve found us at last, Isabel! It’s a great cause for celebration.

Autists, parents, and friends: Please take a moment to welcome Isabel to our community!

© 2011 by Rachel Cohen-Rottenberg

11 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.

© 2011 by Rachel Cohen-Rottenberg

75 comments

Self-Advocacy Begins at Home

December 7, 2010 Rachel Communication, Community, Self-Advocacy

Last week, we received a fundraising letter in the mail from a local agency that serves people with developmental disabilities and mental health issues. It’s a very good organization that we wholeheartedly support, but the letter contained a moment of “us and them” thinking that I could not let go unanswered. And so, as the ASAN-VT chapter leader, I wrote and sent the following letter to the executive director. (I’ve changed her name for the purposes of this post.)

December 1, 2010

Dear Ms. Graham,

This week, I received your fundraising letter in the mail. My husband and I intend to send in a contribution to your organization, as we fully support all the great work that you are doing.

I was troubled, however, by the following sentence in the second-to-last paragraph of your letter:

“We have found, over and over again that people with disabilities want the same thing that you and I want—family and friends, being connected to their community, and meaningful employment.”

The phrase “you and I” is set off in contrast to “people with disabilities,” as though the reader addressed as “you” could not possibly be a person with disabilities. Many of us who are disabled receive and read your letters, and being excluded from the audience of the letter does not engender a feeling of connection to our community.

Words have a great deal of power. Given that one in five Americans is disabled, and that all of us run the risk of becoming disabled at some point in our lives, we must remember that there is no “us” and “them” here. We are all in this together.

Sincerely yours,

Rachel Cohen-Rottenberg
Chapter Leader
Autistic Self Advocacy Network of Vermont

I’ll let you know whether I receive an answer.

© 2010 by Rachel Cohen-Rottenberg

14 comments

Vermont Culture: A Dream Come True

November 18, 2010 Rachel Community, Honesty

Okay, so I was looking through last week’s edition of our local paper, and I came across a review of Judson Hale’s Inside New England. In his book, the author discusses the ways in which each New England state has developed and retained a distinct regional identity. And what, in Hale’s view, are the traits characteristic of Vermonters? You won’t believe it.

I mean it. You really won’t believe it. Here they are. I’m not kidding. I’m quoting verbatim:

1. Common sense
2. A dry sense of humor
3. Impeccable honesty
4. A direct manner of speaking
5. A healthy obsession with freedom
6. A lot of hidden suffering

I believe I was discussing my excellent intuition just yesterday, wasn’t I? Almost three years ago, I had a very strong intuition that my family and I really, really, really needed to move to Vermont. Now I know why!

So listen up, everyone. I really think that you all need to move to Vermont. I do. I really do. I don’t want to hear any complaints about changing your job, selling your house, convincing your spouse, uprooting your entire life, moving away from everyone you’ve ever known, and taking a long trip in an airplane with children who don’t do well in enclosed spaces. Detail, details, details. And yeah, I know that change is difficult—in fact, I empathize with your situation—but, in addition to the fact that Vermont culture looks suspiciously like Autistic culture, look at all the other benefits you will receive upon arrival:

1. We will meet face to face, and you don’t even have to make eye contact.
2. The Green Mountains are beautiful.
3. Gay marriage is legal.
4. The trees outnumber the humans.
5. You will hear actual people say “Ayup.”

Plus, as an added bonus, if enough of you show up in the next year or so, the demographics will show an unprecedented spike in the number of autism cases in the state, leading the autism-as-disease brigade to posit all kinds of absurd explanations (“It’s the water!” “No, it’s the vaccines!” “It can’t be the vaccines. The numbers haven’t risen like this elsewhere!” “Oh, shut up. It’s the vaccines.”). Wouldn’t it be fun to be part of that?

I think so. Ayup.

© 2010 by Rachel Cohen-Rottenberg

41 comments
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