Archive for January 31, 2011

Guest Post Series: Widening the Disability Perspective

January 31, 2011 Rachel Guest Posts

In an effort to give more visibility to the lives and concerns of those whose stories are not told nearly enough in disability circles, I’ve created a guest post series called Widening the Disability Perspective. I plan to open my blog space, on a regular basis, to guest posters from both the autism community and the wider disability community. If you are interested in guest posting, please contact me.

My first guest post, Meet Disability Norm, was written by Claire, who authors the blog Life with a Severely Disabled Child.

Meet Disability Norm

A few years after my daughter had her stroke and she became, as a result, severely physically and cognitively disabled, I started searching the internet for information, stories, references to…anything…that validated the life I was experiencing with this child. However, stories specific to severe combined disabilities were almost non-existent outside of the blog world (a world that I discovered only much later), and most searches involving “disability” tended to land on sites relating to activism and advocacy.

I learned from this virtual foray some of the basic characteristics of disability rights activism: the removal of architectural barriers, the refutation of the medical model in favour of the social model of disability, the engenderment of full-inclusion and community living policies, and the destruction of “better dead than disabled” stereotypes.

There is no question that these principles, these goals, on “paper,” are laudable, and their implementation long overdue. What happened in translation into a real-world working model, however, is another matter. Ironically, in their fight to “disable” limiting concepts embodied by a word like “normal,” many activists created an acceptable “norm” themselves, something I cynically call “Disability Norm.” Here is a sample:

The independent living movement has been an important part of this broader movement for disability rights. It is based on the premise that people with even the most severe disabilities should have the choice of living in the community. This can be accomplished through the creation of personal assistance services allowing an individual to manage his or her personal care, to keep a home, to have a job, go to school, worship, and otherwise participate in the life of the community. The independent living movement also advocates for the removal of architectural and transportation barriers that prevent people with disabilities from sharing fully in all aspects of our society. (emphasis mine)  (http://bancroft.berkeley.edu/collections/drilm/introduction.html)

It was repeatedly pounded home to me that my daughter could neither be happy nor “representin’” lest she was in a regular classroom environment, kept away from various “fix-it” therapies and/or surgeries, and headed toward a job living in a group home run by “Community Living” (or living independently, of course), where she could “choose” how she wanted to run her life. Ultimately, disability wasn’t just “natural;” it was a god-given gift to be celebrated!! Then, of course there was the tricky issue of “live and don’t let die”… Well, at least I got the “ramp-in-front-of-my-house” part right.

The fact of the matter is that my daughter’s needs are not supported by, nor even reflected in, Disability Norm. Because her inhibitory functions were destroyed by the stroke, she can’t stand overstimulation of any sort, be it physical or emotional. She needs to be “segregated,” to an extent, in order to be most comfortable and to function optimally. Full-inclusionary practices are at best uncomfortable and at worst unsafe. Ideological activists scream that there is nothing in between complete seclusion and full inclusion. I see many realistic options in between.

The realities of her physical condition require that she be under medical supervision: shunt, g-tube, drop foot, contractures, severe scoliosis, seizures, bouts with cyclical vomiting and hyponatremia, and near-constant physical pain. Furthermore, if there were a cure for “screwed-up brain,” I would give it to my daughter, not because I don’t love her exactly as she is, but because severe disability is no celebratory matter. Disability Norm has turned its back on the medical establishment where it should have gone in full bore to inform—and hence, transform—the model to embrace the broader social implications of its technologies and ideologies.

That my daughter could live “independently” or in a “group home” is a joke, as she can’t express her needs fully, and requires full care (with specialized equipment) and 24-hour supervision to watch for her to suddenly stop breathing. The belief that every residential environment is equivalent to “warehousing” denies the reality that such environments, when optimal and necessary, can provide better staff, better stimulation, better physical therapy, and better opportunities for supervision, comfort, and safety to the severely disabled. The complete ideological abandonment of the “institution” model in favour of community living threw the baby out with the bathwater. Now, there is little incentive to rehabilitate existing institutions, and community living remains an unsafe environment, still plagued with abuse and neglect: rock and a hard place.

Disability Norm, most significantly, oversimplifies issues of life and death. In the land of severe disability, this is never a black-or-white issue. We parents of these children are often faced with awful decisions when it comes to just how far we should or should not go in treating our children when they are in crisis. (You may go visit two such individuals here and here.) Sometimes, by the grace of god, we don’t have to make the ultimate life-or-death decision, because our children die naturally, in their own time. But more often than not, we parents are left having to decide their fate. Though the intrinsic value of any human life is, to me, irrefutable (Peter Singer be damned), there can be no blanket statement about whether or not death is preferable to life with a disability. For our children, it all depends on the disability and what is transpiring in any given moment. Sadly, the lack of any presence of disability advocacy in hospitals leaves new parents of severely disabled children particularly vulnerable: when faced with only one, narrow perspective of disability, death is usually perceived as the only option. Would Disability Norm more vigorously approach, rather than run away from, the not-so-esteemed halls of the medical establishment, this would not be the case, and these issues would be painted in broader shades of grey.

Genuine advocacy and activism would account for the existence of the most extreme end of the disability spectrum. This defies the establishment of “acceptable” parameters—Disability Norms—when it comes to the treatment of individuals with disabilities. It holds true to the fundamental principle that all people with disabilities are unique, valuable human beings who have a right to live in society in a way that best accommodates them—with the understanding that sometimes, this means life outside of society, or one where “society” is delicately and gently brought to them. Such advocacy would include a vigorous dialogue with, rather than animosity toward, the medical establishment, in order to bring it up to speed on the realities of life with disability. Such activism would be informed by the very real life-and-death situations that caregivers of those severely disabled face all too regularly.

With this broadening of perspective, I would be less likely to hear the subtle whisper of “hypocrite” in my head when reading about those vigorously decrying “ableist” views and “normate” policies, all the while positing their own Disability Norm.

25 comments

And the Truth Is…Are You Ready?

January 30, 2011 Rachel Awards

I skinned a raccoon in the eighth grade.

Yup. Most of you thought I knew what a meme was, didn’t you? But I really did have to look it up. I can still tell you the meanings of the obscure SAT words I studied out of the big Barron’s book in the summer of 1975, but yes, I have to look up four-letter words.

Well, actually, not all of them. Some I’ve become familiar with through repeated use. Hell, yeah.

But back to the raccoon, ’cause it’s a cool story. (Really. It doesn’t get disgusting till much later in this post.) When I was in the eighth grade (1971-1972), I had an amazing science teacher named Miss Dorothy Green. Miss Green came from Colorada (that’s how she pronounced it), and she was a hunter. In the rural backwater in which I now live, she would not stand out, but back in my conservative, suburban Massachusetts grammar school, in which the girls were still required to wear skirts, I can’t believe she even got a job.

She was wonderful. One day, she brought in the pelt of a coyote that she had hunted and skinned. I thought it was cool. It still had the face on it, with teeth even, and I remember it clearly, because she let us get up close and personal with the pelt, and I got to touch the teeth.

After showing us the pelt, she said that anyone who wanted to could bring in an animal to skin. She wasn’t expecting that we’d hunt it up. She was talking roadkill. Most of the girls went “Ewwwww!” (as perhaps some of you are now), but in those days, I was still determined to prove that I was not a squeamish girl, so I took her up on the challenge. I think she’d been thinking small mammals, but I was into something much grander.

Now, there is no f***ing way that my parents were going to pick up roadkill for me to skin, but my best friend Danny Wyner had New Age parents before there were New Age parents, and one day, the perfect piece of roadkill turned up. Danny and his parents were out for a drive when they spotted a dead raccoon by the side of the road and, bless their hearts, his parents helped him bring the dead raccoon into their suburban car, suburban home, and suburban refrigerator until the next morning, when Danny lugged it into school.

(If you’re eating right now, or have anything in your stomach, you might want to skip the next two paragraphs.)

It was a big f***ing raccoon, let me tell you, and Miss Green got right to work showing us what to do. For an entire week of science classes and free periods, we used razor blades to cut the sinews that held the skin to the rest of the body. When we were done, Miss Green told us that we could attach the head to a tree in a wire mesh. Why, you ask? So that insects could eat out its brain, that’s why. Then we’d have a handy-dandy raccoon skull.

The rest of the story involves a fair amount of squeamishness on everyone’s part. You see, we did separate the raccoon’s head and attach it to a tree in the woods behind our school. Problem was, it fell down. Where, I don’t know, but for the rest of the year, I was terrified to walk into the woods because all I could think about was the possibility of stepping on a raccoon skull and hearing it go crunch.

As for the pelt? Well, my grandfather was a furrier, and I just knew that he’d be the perfect person to tan it for us. Unfortunately, he did not think so. When I called him up to ask him, here’s what he said:

“What? Where’s the pelt now? In Danny’s refrigerator??? Are you crazy??? You’ve got the skin of a dead animal in Danny’s refrigerator??? Throw that thing away before you get a disease. You’re going to get a disease. I can’t believe your mother let you do this.”

So that’s the story and, as it turned out, it became the final chapter in my life as a tomboy. Nowadays, I can hardly even look at a dead mouse. When we lived on the farm and I had to trap mice, I’d use one of those electronic traps, take it outside, open it up, avert my eyes, hold it at arm’s length, and shake it out in the woods.

Ewwwww.

Thank you all for playing, and congratulations to bbsmum for guessing correctly!

© 2011 by Rachel Cohen-Rottenberg

14 comments

I’m Part of a Meme!

January 28, 2011 Rachel Awards














Meme: A relatively newly coined term, identifies ideas or beliefs that are transmitted from one person or group of people to another. The name comes from an analogy: as genes transmit biological information, memes can be said to transmit idea and belief information. (From the Wikipedia entry)

Jillsmo over at Yeah. Good Times has created an award, The Memetastic Award, which has now made the rounds to yours truly. Laura over at Life in the House That Asperger Built has selfishly inflicted graciously bestowed it upon me.

Here’s what Jillsmo has to say about the profound and mysterious origins of the award, along with the rules visited upon its victims its illustrious recipients must follow:

*Jillsmo says*

I’ve created an award!! You know those blogger awards that go around the blogosphere, I’ve gotten a few before. It’s nice, to get these things, it means that somebody likes you and wants to spread your word. (That actually sounded kind of gross, “spread your word.” Please don’t spread my word, I like my word the way it should be, the way nature intended, in its original unspread state. But you know what I mean). So, I figured there aren’t enough of these things around, at least, I haven’t been given one for a few months, surely the blogosphere needs another one! (Is “blogosphere” the right word to be using here? It doesn’t look right to me.)

So, I present to you all: The Memetastic Award! Named as such because these things are memes and its purpose is solely to celebrate the memeness of the award giving process. Let’s rejoice in our memeocity by passing this award on to other people! It will be memelicious! Okay, mostly I just want to see what happens, and how far this thing goes. Wouldn’t it just be so cool if an actual meme was created from this? Not very likely, but a girl can dream, right? At this point I’m just hoping it makes it past my own blog.

Here are the rules:

1. You must proudly display the absolutely disgusting graphic that I have created for these purposes (put it in your post, you don’t have to put it in your sidebar, I think that would seriously be asking too much). It’s so bad that not only did I use COMIC SANS, but there’s even a little fucking jumping, celebrating kitten down there at the bottom. It’s horrifying! But its presence in your award celebration is crucial to the memetastic process we’re creating here. If you need a higher resolution version… I totally have one!!

2. You must list 5 things about yourself, and 4 of them must be bold-faced lies. Just make some shit up, we’ll never know; one of them has to be true, though. Of course, nobody will ever know the difference, so we’re just on the honor system here. I trust you. Except for the 4 that you lied about, you lying bastards! But don’t go crazy trying to think of stuff, you’ll see by the example I’ve set below that we’re not really interested in quality here.

3. You must pass this award on to 5 bloggers that you either like or don’t like or don’t really have much of an opinion about. I don’t care who you pick, and nobody needs to know why. I mean, you can give a reason if you want, but I don’t really care.

4. If you fail to follow any of the above rules, I will fucking hunt your ass down and harass you incessantly until you either block me on Twitter or ban my IP address from visiting your blog. I don’t know if you can actually do that last thing, but I will become so annoying to you that you will actually go out and hire an IT professional to train you on how to ban IP addresses just so that I’ll leave you alone. I’m serious. I’m going to do these things. Starting with the 5 of you I’m about to pass this award on to.

5. This one isn’t actually a rule, but once you do the above, please come back here and link up to the Memetastic Hop so that I can keep track of where this thing goes.

*Jillsmo stops talking now*

Okay. So. Ready? Here goes:

1. I feel so honored to receive this award, I cannot tell you. Truly. You shouldn’t know. I’m plotzing. I’m practically delirious. I would pass out, but I’ve got three more lies four more things to list about myself.

2. I did so totally know what a meme was when I first saw this award on Jillsmo’s blog, and I absolutely did not need to look it up on Wikipedia for myself. I just posted the Wikipedia entry out of pity for you poor shleps who didn’t know either.

3. When I was in the eighth grade, I skinned a raccoon. (Hey, it was roadkill! It was just lying there.)

4. When I go on vacation, I love jumping from the hot tub to the swimming pool, over and over, just for the cold rush.

5. I’m so happy that it’s only January, and that the snow is still on the friggin’ ground, aren’t you?

And now, while you’re trying to figure out where the truth lies (Get it? Truth? Lies? Hahaha!)…

The moment we’ve all been waiting for.

Envelope, please.

Pause.

Pause.

Suspenseful pause.

The Memetastic Award goes to:

1. Aspergirl Maybe at Aspergirl Maybe

2. Bruce at Born 2b me

3. Clay at Comet’s Corner

4. Diane at Don’t Panic

5. Lili Marlene at Incorrect Pleasures

Congratulations, suckers lucky recipients!

© 2011 by Rachel Cohen-Rottenberg

31 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

Adventures in Self-Advocacy: Saying Thank You

January 24, 2011 Rachel Hearing, Marriage, Self-Advocacy

In the course of our trip to Maine last week, I learned the importance of expressing my appreciation to the people who provided accommodations and accessibility.

As soon as the employees at the inn began giving us quiet places to eat, I found myself looking for opportunities to let them know what an enjoyable time I was having. For instance, when we were seated in the dining room away from the other guests, I said, “Thank you! This is just what I need.” When we were seated in a quiet area for breakfast, and the waiter asked whether the situation was working for me, I said, “Absolutely. This is just perfect.” When the restaurant manager asked us whether we were enjoying our stay, I said, “People here have been very helpful in working around my sensitivities to sound. It’s made all the difference in the world. I very much appreciate it.”

Now, this course of action may sound like ordinary politeness—and perhaps it is—but I always feel myself walking a very fine line. On the one hand, I know that I have a right to inclusion. And so, I could just have sat there with a smug attitude that said, “I deserve this treatment. Why should I thank you?” And yet, it’s just not in me to act that way. Yes, we all deserve inclusion, just as we all deserve love, friendliness, and beauty in our lives, but it does no harm to say “thank you” to the people who provide them. It’s good for the soul of the receiver and for the soul of the giver.

On the other hand, saying “thank you” for accommodations can easily turn into a self-effacing apology for our needs, as though we’re getting a favor that we don’t deserve. It is all too easy to venture into the realm of “Thank you for giving me this special treatment,” or “I appreciate that you don’t mind my being such a bother,” or “It’s so nice of you not to get irritated by my request.”

No. When asking for accommodations, there is no special treatment involved. What we’re asking for is to be treated as equals. And if a person is bothered or irritated by our respectful, persistent requests to be treated as equals, I would count that as a very good thing. After all, in order for anything to change, people have to move outside their comfort zones and carve out new ones. Otherwise, they’ll never expand their ideas of what’s possible, what’s deserved, or what’s ethical.

Perhaps the best way to express appreciation for accommodations is to say, “I want to acknowledge the way you accorded me respect and provided equal treatment. You did an excellent job.” To my mind, this type of statement increases one’s dignity, and it lets the other person know that he or she hasn’t just followed the law or provided good service. The person has engaged in an ethical, potentially life-changing moment for another human being. And by showing our appreciation, we make it more likely that the person will provide accommodations to the next disabled individual who comes through the door.

The other night, my husband told me that he is planning to write a letter to the hotel manager. He wants to let her know how much he appreciates what her staff did for us. When I asked whether we should write the letter together, or whether I should be the one to write it, my husband kept pushing back with “That’s okay. I’ll write it.”

At first, I felt left out; after all, shouldn’t I be the person to follow up? But now I realize that when people make accommdations for me, they also make accommodations for my husband as an individual, and for both of us together. When my own possibilities expand, we can do more things together, and my husband’s enjoyment increases.

I think that it’s important that our loved ones express their appreciation on their own behalf, because we do not exist in isolation. How people treat us deeply affects the people who care about us. So, as much as I want to follow up with a letter myself, I’m going to let my husband have his say.

God willing, I’ll have many other opportunities to say “thank you” myself.

© 2011 by Rachel Cohen-Rottenberg

10 comments

Adventures in Self-Advocacy: Lessons Learned on Vacation

January 20, 2011 Rachel Hearing, Marriage, Self-Advocacy

My husband and I just got back from a few days in Maine, where we went to celebrate our eighth wedding anniversary. We stayed at an inn on the coast that we’d enjoyed when we were first married. The place is wonderful: great food, beautiful rooms, friendly staff, and a large common area with a fireplace. We had agreed that we should prepare to make adjustments in order to keep my auditory system happy, including eating in our room if the staff couldn’t find us a quiet place to sit in the restaurant. We figured that the whole point was to be together, and that we’d have a good time, no matter what. We hadn’t gone on vacation in years, so we were determined to have a good experience.

And we did have a fun time, but it took some doing. Ultimately, we had an even better time than I’d hoped for, and I learned a lot along the way.

When we checked in on Monday, my husband explained that I have hearing difficulties, and that we would need a quiet place to have our meals. The nice young man at the check-in desk said they would do their best—not exactly a commitment, but promising.

When we showed up for dinner, my husband explained that they needed to turn the music down if we were going to be able to be there. What he meant was “off,” but what he said was “down,” and I didn’t bother to clarify. Of course, I should have said, “In order to be here, I need you to turn the music off completely. Would you do that?” But I didn’t feel confident enough to risk an initial refusal and continue the conversation. Instead, I lapsed into the denial of “Well, it never actually works for me to converse in a place with music playing, but maybe this time, it will.” Yeah, right. That was my first mistake.

The person who seated us did not get it. She tried to get us to sit at the far end of the restaurant, away from the speakers, which didn’t help, since the room was quite small. I don’t know what she was hearing, but my ears weren’t picking up any difference in sound whatsoever. So, I said, “You’re really going to need to turn the music down in order for us to stay.” She said she would.

We waited: one minute, two minutes, three minutes. Still nothing. I was starting to max out. When she came by again, she said, “So, how is that?”

I was shocked, but still in good enough shape to say, “Did you actually turn the music down? I hadn’t noticed.” I even made eye contact—which, as you know, is a big deal for me. It’s kind of critical to do that when you’re needing to get politely in someone’s face, so I managed. When she registered what I’d said, she looked at me as though she expected me to back down. I didn’t. I just kept looking at her.

And then my husband chimed in with, “Could you please turn the music down?”

Unfortunately, that’s when the woman said, “No, that’s all I can do,” in a tone of voice that would have been more appropriately applied to the statement, “I’m so glad you’re enjoying your meal. Let me know what else I can do for you.” I’m a classically trained musician, and I can read vocal tones like no one’s business. This woman’s tone was so inappropriate to her words that it was unnerving.

My heart was steadily dropping toward my shoes, and believe me when I say that I really need to work on that response. It doesn’t help at all. And here’s where I made my second mistake: I really wanted to up the ante about the music, but all I could feel was “What’s the use?” and I let that feeling win. And for my husband’s sake, I decided to stay. So, I put my earplugs in, and doing so made the music recede quite nicely. Of course, I had trouble hearing my husband, and had to ask him to get close to my face and repeat himself a bunch of times, so it was very tiring, but I sat there because, for some strange reason, I thought I should.

Once the food was served, we were able to begin our meal. There were only two other couples in the restaurant, and they were very soft-spoken, so I rationalized that things could always be worse. Of course, in the process, I completely ignored that I was doing way too much work for what should have been a relaxing dinner.

And then, as if on cue, things got worse. The chef came out and started yacking, in a loud voice, with the man at the table next to us. I could hear him quite clearly through my earplugs—that’s how loud he was. And he went on, and on, and on. After awhile, I just started staring at him, and it wasn’t a polite stare. He made eye contact with me a couple of times, but he just kept going. I very badly wanted to say, “Could you please lower your voice? We’re trying to enjoy our meal here.” But giving into the waitress’ refusal to turn down the music had already diminished my sense of power, and I didn’t feel comfortable or centered enough to confront him. Plus, my auditory system had long since started screaming, “Why the hell are you still in this room?” I was not exactly at my best.

Failing to confront the loud chef was my third mistake. It only made me feel more disempowered.

I found myself eating my meal really fast, just to get out of there, and I left in short order. And worse, I was absolutely exhausted and miserable for the rest of the night. I was upset, I couldn’t think straight, my stomach hurt, I felt nauseous, and every muscle in my body was tense. I was wiped out.

When Bob got back to the room, we agreed to figure something else out for the next day. And we did. He went to the restaurant manager and explained the situation, and wow, did he get results! They agreed to seat us in our own little area of the restaurant, with a door that would shut out the sound from the rest of the place. When we got there the next night and found that no such arrangement had been made, my heart sank again, but when we inquired, the waitress said, “Oh, yes, we’ve had a change of plans. We’ve decided to serve everyone in the grille, and you can have the entire dining room all to yourself, without any music playing at all.”

Can you imagine? The silence was so sweet. I was in heaven. We had a wonderful meal and ended up feeling very refreshed. And the next morning, they gave us our own little dining area for breakfast, away from music and conversation.

So, when all was said and done, we had a great time. We ate delicious food. We walked on the beach in a snowstorm. We sat by the fire and read. We watched movies. And we relaxed. When Wednesday arrived, it was difficult to leave, but I felt better in my mind by the end of our time there than I’ve felt in awhile.

On the way home, we debriefed, and I realized how much I’d learned about self-advocacy from the whole experience. Here’s what I realized:

a) I have to plan ahead of time. For instance, I cannot wait until I show up at a restaurant before I explain my situation and negotiate what I need. So, before we go on our next vacation, I’m going to write a letter to the manager wherever we stay, explaining the accommodations I need, and getting agreement on what they will provide. That way, even if I show up and they don’t give me the accommodations right away, I’ve got a basis on which to argue without having to start from scratch. I can take out my letter and say, “Look, I explained the situation well in advance of coming, and you agreed to make accommodations before I ever showed up. So, how do you intend to fulfill your part of the agreement?” And I can just keep asking that question until I get what I need.

b) I cannot try to be in an environment that does not work for me. Ever. I cannot sit in a restaurant with music playing and expect to converse. I cannot filter out the sound when people nearby are talking. I cannot filter out the sound when people in another part of the room are talking and their voices are carrying. It does not work. Those days are over. I’ve been learning this lesson, over and over, in all kinds of ways. I end up in pain, pure and simple. If I’m by myself and the room isn’t too loud, blocking my hearing works more or less well. If I’m with someone else, though, blocking my ears is beside the point.

So why did I slip into denial at the restaurant in Maine? Why didn’t I ask for the music to be turned off? Why didn’t I say at the outset, “You know, I need a place away from music and conversation in order to enjoy my meal. Can you help me make that happen?” Why did I make these compromises that are so bad for my health? I wasn’t just avoiding confrontation. In the past, setting these limits has made me feel isolated and so, in order to avoid that feeling on our vacation, I put up with things that made me sick. But when the accommodations finally came through, I saw once again what was possible. I saw that I have a right to go places and enjoy myself like everyone else, without rendering myself ill, and that I can advocate for that right. My disability is not purely physical. It’s largely socially constructed, and there are ways around it.

Self-advocating doesn’t mean that every place will become accessible to me, but I increase the odds considerably by insisting on being included, and by trying to work with people to make that happen. After all, I don’t need to go out all the time. I’m on friendly terms with my solitude. But I would like to be able to go out once in a while and have it work. There are a couple of restaurants in town that seat us in quiet areas, away from ambient sound, where we can enjoy our meals. I know that it’s possible, and I need to remember that.

c) I very badly need to undo the cascade effect that begins with failing to ask for what I need, or with giving in to refusal and dismissal. Once I let go of my power and back down in one instance, it gets that much harder to find my power again when I need to stand up in another instance. It wouldn’t be so terrible if these instances were spaced days, weeks, or months apart, but when you’re dealing with sound, they can be spaced moments apart. If I give in and say, “Okay, I’ll compromise in this one instance, even though it won’t be good for me,” it’s nearly impossible for me to meet the next instance and say, “Okay, that’s enough.” Instead, I just keep backtracking, and that only makes the situation worse.

d) Being disabled makes self-advocacy a lifelong, daily necessity. I hadn’t really wanted to face this fact before, but it really hit me full force this week. I hate being confrontational face-to-face; so many of my adjustments to all of my disabilities have been along the lines of, “Don’t mind me. I’ll manage.” That just isn’t going to work anymore, because in truth, with my auditory system in the shape it’s in, taking a “don’t mind me” approach is bad for my health. It would be like acceding to pull myself by the arms down the street rather than use a wheelchair and insist on curb cuts. My auditory processing condition may be an invisible disability, but that doesn’t make it any less serious or put me in less pain.

e) Self-advocacy includes allowing others to speak up on my behalf when they are available to do so. I’ve resisted this idea, because I always feel that I should be able to do everything myself at all times, but that’s really based on an illusion.

The fact is that no one does everything alone all the time. Everyone gets help. The help is often invisible, because the world is set up for typically able-bodied people, but a great deal of the time, non-disabled people get plenty of help. As long as I don’t give my power away to the person speaking on my behalf, or allow asking for assistance to make me feel less than competent, or come to depend on someone else’s voice more than on my own, I’m okay. After all, Moses let Aaron speak for him sometimes, right?

And if no one is there to speak on my behalf, I am fully capable of finding the inner strength to do it myself. I’ve been doing it more and more as I realize my right to be fully a part of this world. Practice makes perfect, and I am seriously practicing.

f) It’s very difficult to do self-advocacy, emotionally as well as physically, so I need to reduce my worry and tension over it. I have to breathe, relax, and choose my words carefully and to best effect.

I never imagined that I’d have to do any of these things. My life is not how I’d once thought it would be, but whose life is? My life is what it is. All I can do is meet it head on, knowing that I have a right to respect and inclusion, just like everyone else.

© 2011 by Rachel Cohen-Rottenberg

33 comments

On Doubt and the Doubters

January 15, 2011 Rachel Ableism, Depression, Diagnosis, Disabilities

First, they ignore you.
Then, they laugh at you.
Then, they fight you.
Then, you win.
—-Mohandas Ghandi

Most of us who discover our place on the spectrum later in life go through a period of self-doubt. We think “Well, I fit the criteria, and I identify with the experience of other Autistic people, and it explains just about everything about my life, but…but…but…Really? Me?” If you’ve gone decades without a diagnosis, and then you discover that everything fits, the result can be a combination of euphoria (“At last! I’ve found my kin! And a Unified Theory of Me!”) and extreme self-doubt (“But if I passed for typical this long, can I really be Autistic? Maybe everyone was right, and I’m just plain freakin’ nuts.”)

We Autistics are not the only ones who have to deal with this sort of doubt. Lots of autism parents have to deal with it as well, especially when their children do not fit a narrow stereotype. Parents may feel, at first, that they are overreacting to their children’s atypical behavior (“Hey, I was an awkward, quiet, geeky, early reader, too! What’s the big deal?”) even as they see their children struggling in ways that they themselves did not (“Yeah, but I don’t remember scratching my face in paralyzing anxiety over going to grandma’s house”).

So it’s a process for all of us.

It would be a lovely world if people would just leave us alone to deal with our doubts in peace, wouldn’t it? But, of course, that would be asking too much. To make a life-changing moment in our lives even more fun, enter the doubters. You know who they are. Sometimes, they’re well-intentioned people who are just trying to cheer us up. They say things to parents like, “Your kids are not Autistic. They’re just quirky and shy!” Sometimes, they’re otherwise respectable professionals who, for reasons I can’t yet fathom, say things to parents like, “Your kids are not Autistic. They’re just quirky and shy. So, please stop bilking the school systems of $50,000 a year on behalf of your weird but otherwise neurotypical children. Take a chill pill, and return that money to the outgoing, conventional kids who rightfully deserve it.”

Needless to say, many of us Autistics put up with the same sort of thing. There are the people who try to make us feel good by telling us that we don’t seem so, you know, weird. They say things like, “But you seem so normal! You can’t possibly be Autistic.” Apparently (and please correct me if I’m wrong), this is supposed to be a compliment. (NB: It’s not.) If they’re being slightly more diplomatic, they might say things like, “Are you sure? After all, you’re happily married. With children. And you can write. And speak. And have insights!”

It gets real tiring, real fast. After all, the only way to convince such people that what you’re saying is true is to take out a laundry list of everything that’s “wrong” with you or your kid. What a great topic of conversation! Doesn’t everyone want to talk about what they can’t do rather than what they’re actually good at? Don’t all parents want to keep repeating the list of their children’s difficulties, ad nauseum? Don’t we all want to blow our privacy to hell, just to convince people that we’re not lying, stupid, or unable to see what’s in front of us? And it especially sucks that we have to defend ourselves when we’re just a wee bit tired from coping with the disability itself, if you know what I mean.

And then, of course, there are the real nasties out there—the ones who call anyone who can write, speak, choose their friends, carry on a relationship, work a job, make a video, raise children, or live independently “fake Autistics.” I find the ignorance and meanness of these kinds of statements appalling. I understand that people are angry, stressed, sad, and overwhelmed for any number of reasons, but get a grip. How can anyone make such pronouncements? The criteria they’re using are not a reasonable basis for a diagnosis, to put it mildly, and carrying out diagnostic assessments on complete strangers over the Internet is not exactly a responsible practice.

One of the ways that many of us try to resolve our doubts—and get other people to please shut up now—is by getting an “official” diagnosis. And, I know for certain that an “official” diagnosis goes a long, long way. I got diagnosed very early in the process of discovering Asperger’s, and it was very liberating to have a third party listen to me and validate my perceptions. In fact, when I tried to thank the specialist who diagnosed me, he said, “You really don’t need to thank me. You’d already used your insight to figure it out before you walked in the door.”

I know that without an “official” diagnosis, we can feel a lot of nagging doubt. And so, people often look to a specialist to remove these doubts. And sometimes, I think, it works. For me, it didn’t. It went a long way, but it didn’t erase all doubt immediately. Certainty took awhile to arrive. I needed to integrate my new understanding into my sense of myself before I really felt sure. I had way too many stereotypes of autism in my head to root out, and I had to recover from way too many years of minimizing my difficulties. It was a process.

What worked for me was writing my book. I was able to go over my whole life—everything I’d gone through, everything I’d felt, every way I’d coped, all the ways I’d faked it, all the things I’ve done so well—and in the process, everything came together in such a way that the question of “Really?” was laid to rest. And even better, I was able to be honest and proud of being who I am. I don’t mean proud of my accomplishments. I mean proud of who I am.

But even with a diagnosis, the doubts expressed by others often refuse to go away. There are people who call autism the “diagnosis du jour.” There are people who think that because we can do some things, we can do all things. There are people who will never understand that some things cannot be overcome by willpower. There are people who think that a child in the middle of a meltdown is just being a bad kid. There’s really no end to the things that people will say to any of us, and having an “invisible” disability just compounds the problem. After all, for the most part, many of us look for all the world like typically able-bodied people. We look just like the people doing the doubting. If we look like them, they think, how could we not be like them, think like them, experience the world like them? After all, it just takes a little effort, and clearly, we’re not rising to the task.

They think that what they literally see before their eyes is the whole picture. Apparently, we Autistics aren’t the only ones who get hung up on visuals—not by a long shot.

Unfortunately, there are no proven treatments for this kind of denial. There are only coping mechanisms for those of us who are the objects of it. Here’s how I’m working on the problem:

1) I am getting increasingly clear on the fact that, unless it’s in the context of official paperwork, it’s ethically wrong to ask a disabled person to prove a disability. I’m also coming to understand that it’s equally wrong to go about explaining myself. It feeds the monster, and it gives away my power, big time, when I need to conserve my energy for more productive things, like enjoying my life.

So how to answer back? A while ago, I read a piece by a disabled woman about how she responds to people staring her down when she parks in a handicapped space. When they see her walk out of her car and say to her, “But you don’t look disabled,” she says, “And you don’t look like a doctor!” Then she moves on. I think we would do well to answer the doubt and denial that come our way with a similar response.

2) When I encounter doubt from anyone, I’ve started imaginatively referring the doubter to the specialist who diagnosed me. That is, for those who want to question whether I’m Autistic (and, by implication, whether everyone like me is Autistic), I have at the ready the following statement: “You know, if you don’t believe me, take it up with the specialist who diagnosed me, because I really don’t need to spend any time on this subject.” Being able to mentally offload the question onto the diagnostician has been a major, unexpected benefit of having an “official” diagnosis.

3) I’ve begun to understand why the doubt can settle in and feel so upsetting, especially to Autistic people. Many of us, because we’ve lived with a lot of bullying and social rejection over a number of years, can develop something called “reactive depression.” One of the hallmarks of this kind of depression is a tendency to be extremely self-critical and apologetic. So when someone says, “You’re not really Autistic,” it can set off a chain reaction in which our first response can be “Oh, wow, I didn’t mean to take up too much space, or to ask for too much attention, or to take myself too seriously, and maybe I really ought to examine this whole thing again, and oh my, I’m so sorry to have bothered you with it at all.” Then, we get back into another loop of “Am I, or am I not?”

The doubts of others don’t inflame doubts in me anymore, mainly because I can tell the difference between a question that triggers an old, unhealthy response, and a question that signals that I seriously ought to look at something. Questions about whether I am who I say I am don’t fall into the category of friendly questions, and so I’m always aware that they’re simply triggering.

At this point, the ethics of doubting a disabled person’s self-identification come in again: It’s absolutely unethical, in the extreme, to inflame self-doubt in a person who has already been bullied and rejected enough to have self-doubt be an habitual, destructive response. Some people don’t know they’re triggering this response, and these people need to be gently told to end their line of questioning. Others are simply lashing out and are only too happy to trigger a whole series of unhappy responses. These people need to be told, in no uncertain terms, to STFU—and that can mean simply walking away and refusing to engage.

We don’t have to let the chain reaction of self-doubt and apology happen, over and over. It’s just a habit. Habits can be broken, especially when you have the support of a community that understands what’s going on.

Clearly, the whole question of how to talk back to doubt and denial is still a work in progress for me, and I’m very much at the beginning. Describing the problem and starting to brainstorm solutions has been very strengthening, though. I’ve moved out of the mode of explaining, and into the mode of strategizing about how to deflect and keep moving on.

How do you feel about the kinds of doubt and denial you’ve encountered? And what are the strategies you’ve used to deal with them?

© 2011 by Rachel Cohen-Rottenberg

49 comments

An Unexpected Connection

January 15, 2011 Rachel Judaism and Jewish Life

I just found out tonight that Gabrielle Giffords, the U.S. Representative who was the target of last Saturday’s assassination attempt, is my sixth cousin.

I hadn’t realized that there might be a familial connection until Wednesday night, when I was watching television and saw an interview with Lynn Paltrow, who was identified as Rep. Giffords’ second cousin. I have Paltrows in my family tree, including the actress, Gwyneth Paltrow, who is also my sixth cousin. (The original family name was Paltrovitch, which was later changed to Paltrowitz, and then Paltrow.) So tonight, I looked up “Giffords” in my family genealogy and, sure enough, I found out that Gabrielle Giffords’ grandmother was a Paltrow. Her great-great-grandfather, Simcha Paltrowitz, was a rabbi who was descended from an unbroken line of 32 generations of rabbis. According to family lore, he completely immersed himself in the study of Torah, although at one point, he also exchanged Hebrew lessons for English lessons with the brother of Harriet Beecher Stowe.

I don’t expect that I’ll ever get to meet Gabrielle Giffords (any more than I expect to meet Gwyneth Paltrow!), but finding out about this distant relation makes what happened in Tucson feel even closer to home. And so, I’ll end this short post with a quote about the awesome power of language, for good and for ill, from the German Jewish philologist Victor Klemperer, who wrote:

“Language does not simply write and think for me; it also increasingly dictates my feelings and governs my entire spiritual being the more unquestioningly and unconsciously I abandon myself to it. And what happens if the cultivated language is made up of poisonous elements or has been made the bearer of poisons? Words can be like tiny doses of arsenic: they are swallowed unnoticed, appear to have no effect, and then after a little time, the toxic reaction sets in after all.”

© 2011 by Rachel Cohen-Rottenberg

12 comments

Oy Vey, Sarah: An Honorary Jew, You’re Not

January 13, 2011 Rachel Judaism and Jewish Life

Up to now, I’ve had a policy about not wading into politics on my blog, unless we’re talking disability rights. I’m not much for political arguments. They take a lot of energy and, given how polarized we are in America, they’re seldom worth it. So I’ve limited myself to commenting on a couple of other people’s blogs about the violence in Tucson and how it came to happen.

But on Wednesday, along comes our illustrious Ms. Palin, who just can’t resist pouring gasoline on an open flame. And how does she do it? By invoking the “blood libel” and painting herself as the victim.

As a Jew, I’m beyond upset. I don’t even think there’s a word for how I feel. I’ve resisted writing about the tragedy in Arizona, but for Ms. Palin to invoke the blood libel, especially in the context of what happened in Tucson, is just so thoroughly insulting, ignorant, and counter-productive that I can’t keep silent.

For those of you not familiar with the blood libel, this particular piece of anti-Semitism, which originated in medieval Europe, consisted of the notion that Jewish people killed Christian children and used their blood to bake matzoh for Passover. It has resulted in the rape, torture, and murder of untold numbers of Jews over the course of many hundreds of years, and it’s a libel that is still alive and well today in various parts of the world. It has yet to expire under the weight of its own absurdity and, as such, it’s still a dangerous lie that incites real anti-Semitism, and real people still run the risk of suffering and dying because of it.

So, if historical memory isn’t enough of a reason to resist throwing the term around needlessly, the current facts on the ground probably are. Respect demands that we take care with the term.

But let’s get to what Ms. Palin actually said. In response to criticism that her violent rhetorical imagery contributed to the violence in Tucson, Ms. Palin quoth:

“Especially within hours of a tragedy unfolding, journalists and pundits should not manufacture a blood libel that serves only to incite the very hatred and violence that they purport to condemn. That is reprehensible.”

Okay. Let’s parse this one out, because it gets confusing if you just try to figure it all out in your head.

Ms. Palin asserts that she is the victim of a blood libel, which in her mind consists of people taking her to task for her rhetoric. Can you say “entirely false and fucked-up analogy”? I’m sorry, but people getting on your case over your rhetoric is not the same as being accused of killing Christian children and incorporating their blood into your holiday preparations. It’s not even close. It’s like comparing a bad day of hunting moose with being put on a train to Auschwitz.

I mean, really. Does this woman have any sensitivity at all?

It gets worse. Who are the purveyors of this “blood libel”? Ms. Palin calls out the “journalists and pundits” who have been talking ceaselessly about this issue since Saturday. But guess who called out Ms. Palin on the dangers of her rhetoric back in March of 2010, after the infamous map with the cross-hairs was published? None other than Rep. Giffords, the target of Saturday’s assassination attempt, who said:

“Sarah Palin has the crosshairs of a gun sight over our district and when people do that, they’ve gotta realize there are consequences to that action.”

Yup. Rep. Giffords called Ms. Palin on her rhetoric a long time ago. Does that make her guilty of a “blood libel,” too? Just because she can’t speak her mind right now doesn’t mean she isn’t being tainted by the analogy. I mean, does anyone think that, if she had the strength, she would say, “Oh, yeah, well, in March, I thought that violent political rhetoric had consequences, but now I see that I shouldn’t go around saying crazy things like that”?

Call me nuts, but I think the answer is “Duh. No way.” I think she’d stand by what she said back in March, right along with the pundits, the journalists, the bloggers, and anyone else with a shred of decency who, far from engaging in a “blood libel,” would like to see the violent rhetoric in this country replaced by intelligent discussion.

And did I mention that Rep. Giffords is Jewish? And that her aide who was killed, Gabe Zimmerman, was also Jewish? These are not just random facts. They’re central to the problem at hand. We’ve got Sarah Palin putting herself in the position of a Jewish victim of violence at exactly the same moment that we’ve got a Jewish man being buried and a Jewish woman fighting for her life after an assassination attempt. And Sarah Palin is comparing to a blood libel exactly the kind of talk that said Jewish woman engaged in last March.

So, in an absolutely stunning reversal of, well, reality, the logic of the “blood libel” analogy puts Sarah Palin (a non-Jew who is not a victim of violence) into the position of a persecuted Jew, and Rep. Giffords (a Jewish woman who is a victim of violence) squarely into the camp of the victimizers. And all this happens at a moment when the actual victims of last Saturday’s violence are either recovering in the hospital or being buried in the ground.

It boggles the mind.

Of course, there’s also the utter illogic of Ms. Palin saying that her words had absolutely nothing whatsoever to do with the violence in Tucson, but that people who say that words can indeed provoke bloodshed are themselves only serving to incite hatred and violence.

Which is it, Ms. Palin? Can words incite actual violence against actual people, or not? Was Rep. Giffords correct, or wasn’t she? You can’t say that your words could never, ever contribute to violence, and then turn around and say that other people’s words do—not unless there’s some sort of magic spell around your words that renders them merely annoying. Either none of us are responsible for a single word we say, or we all are.

I don’t know what to make of all of this. Is Sarah trying to become an honorary Jew? Is she unaware that becoming a Jew involves a long, complicated, years-long process of study and reflection? Does she need someone to tell her that you don’t become a Jew, honorary or otherwise, just because you decide that demands to tone down your rhetoric qualify as a form of persecution?

It’s all quite unbelievable.

© 2011 by Rachel Cohen-Rottenberg

37 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

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