Archive for November 23, 2010

A Review of Common Scents by Kate Goldfield

November 23, 2010 Rachel Book Reviews

This fall, I had the good fortune of reading Kate Goldfield’s book Common Scents: Adventures in Autism and Chemical Sensitivity. The book concerns itself mainly with the past five years of Kate’s adult life. Her chemical sensitivities forced her departure from college with only six weeks left until graduation, and in the years since then, Kate has taken a long and winding path toward finding a safe place to live while also dealing with Asperger’s Syndrome and its attendant anxieties.

The book begins with short vignettes from Kate’s school years: her inability to connect with other children, her preference for the company of supportive adults, her years as a target of bullying, and her college life. Kate sets the scene with memories that bring us directly into the most vivid moments of her life and then moves directly into a narrative about being a young disabled woman in her 20s, trying to find independence and a meaningful life.

As I read of Kate’s travels from Maine, to New York, to Montana, to Oregon, and back again, I was most impressed by her resilience. She describes a life of increasing sensitivity to chemicals (such as those found in perfume, paint, cleaning products, and new carpeting), her difficulties in finding chemically safe housing, and her limited ability to enter most public buildings. Far from engaging in self-pity over her challenges, Kate brings creativity, courage, and wisdom to the task of remaking her life. Her description of how to adapt to a disability is especially telling:

When you have a disability, you have to accommodate it, and change your life around it, in a multitude of different ways. At first you say to yourself, “But this is the way it has always been. What will happen if I do it another way?” And then, after you’ve adjusted a bit and accommodated a bit, you find yourself having to accommodate more, and to tweak more things, and you find it increasingly difficult to get around your disability. Eventually, though, you go back to the basics and find very creative ways to accommodate your disability and function in the world around you.

Eventually, as you become more self-reliant, you become proud of yourself for being able to handle so many things. You eschew society’s conventions in favor of what actually works. And you learn to take joy in the simple things….Disability makes you downsize, re-shift priorities, and keep only what’s important in your life. And sometimes, although you want so much more, that can be a good thing.

Into her tale of becoming disabled by MCS, Kate weaves her lifelong story of dealing with Asperger’s Syndrome and all the ways in which it threatens to isolate her. With her characteristic style, Kate insists upon a life of meaning, a life with friends, a life of meeting new people and having new experiences. Although she registers the difficulties posed by other people’s desire for her to be “normal,” she doesn’t let their limiting attitudes stop her. She learns to make friends, to appreciate the people in her life, and to feel satisfaction in the quality—not the quantity—of her relationships.

Kate’s descriptions of life with Asperger’s are especially apt, and I found myself nodding in recognition of our shared experiences, particularly those that entail not being able to read nonverbal social cues. Because both Kate and I share a love of language, we both find ourselves at an impasse when we are unable to tell whether people have understood our words. As Kate writes:

When I talk, I feel like I am throwing words out into a void, hoping they get to their intended destination. It is a production to say anything at all, and when I finally do, I stand there anxiously, trying to figure out how my words have been received. Did the other person understand the words? Did the person comprehend their meaning? Did the words anger the person? Did they make him or her laugh inside? Does the person agree? Does the person disagree? Does the person want to keep talking to me? Can anyone relate? Do people think I’m stupid? What are they thinking?

It’s almost as though I am the producer of my own theatre company in my head; to talk feels like acting, even if I am being myself. I am putting on a production when I try to communicate with others, and if the audience doesn’t applaud, I don’t know whether the show was any good or not. Since I am driven to connect with others, this problem doesn’t stop me from trying to interact with people, but it definitely makes it more difficult.

But Kate’s book isn’t simply about MCS or Asperger’s. It’s a travelogue from the perspective of a disabled person trying to open up the possibilities for her life. I loved reading Kate’s detailed descriptions of small towns in upstate New York, the beauty of the Oregon coast, and the sights, smells, and foods at the many farmers’ markets she found in her travels. Her passion for good cooking, for interesting people, for new experiences, and for natural beauty shines through in this book about growing up and out into the world.

My only caveat about the book is that it could use some editing and proofreading, but these imperfections did not detract at all from my enjoyment of it. I’ve known Kate through her blog, Aspie from Maine, and I’m very glad that I got to know her even better by reading her first book, Commons Scents: Adventures in Autism and Chemical Sensitivity.

© 2010 by Rachel Cohen-Rottenberg

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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

Being Honest in a World of Guile

November 17, 2010 Rachel Honesty

I’ve been thinking lately about all the ways in which I’ve learned to navigate the world as an honest person. While being straightforward has cost me social points at various times in my life, it’s also engendered trust in friends and colleagues, and I value my honesty very highly. My biggest challenges have revolved around the mistaken assumption that other people are as honest as I am. In the world in which we live, too much trust can have negative consequences and, over the course of my life, I’ve figured out many ways to protect myself. Some strategies came to me very early on, and others became clear only after life had dealt me some harsh experiences. I’ll share my lessons learned.

1. A person who wants to separate me from my money is interested in my money first and in my welfare second (or third, or fourth, or fifth, or tenth, all the way down to not at all). Now, I realize that I’m overstating here, since a therapist, for instance, may care equally about me and about getting paid. Proven exceptions aside, I don’t think it does any harm to take the rule as axiomatic. I began living out this approach fairly early on, care of my father, who was quite suspicious of people’s motives when it came to money. As a result, I’ve never been scammed, not even as a very innocent and overwhelmed young woman. Getting older only makes me more cautious about money and, while I may be overly cautious at times, too much caution does no harm and is infinitely preferable to an overabundance of trust.

2. Reducing my attachment to material goods protects me against buying things that someone tells me I absolutely must have in order to be happy, strong, safe, attractive, or loved. I figured out this one pretty early on as well. I’m very fortunate that I am just as happy looking at beautiful things in a shop window as in my own home. Moreover, I must have been a scavenger in a past life, because most of what I own comes from thrift stores and free boxes. At my age, I have what I need, and frankly, I’m more concerned with a) keeping my living space free of clutter and b) saving as much money as possible for my daughter, stepchildren, and godson to inherit. As a result, I have an absolute aversion to anyone peddling objects of desire mislabeled as necessities. People who try are wasting their breath with me.

3. Trusting my intuition will never steer me wrong. I may not be able to use non-verbal cues to modulate a conversation, but my intuition about people is excellent. When an unsafe person walks into a room, I feel it viscerally. It’s an aspect of my acute sensitivity that I value highly. I have been in situations in which I knew a person was unsafe, but everyone else was oblivious. Months or years later, the person showed his true colors, and everyone ran around feeling betrayed, yelling, “How could we have known?” My only response was “How could you not have known?”

4. When something doesn’t add up, I move on. Along with my baseline intuition, I’ve learned to trust my perceptions when I’m faced with a person whose sales pitch or sad personal story just doesn’t seem to hold together. My logical mind comes in very handy here, because many folks rely on their charming personalities to put one over on people and aren’t paying much attention to the logical consistency of what they’re saying and doing. It always surprises me when someone tries to charm me, because my attention is nearly always focused on understanding the logic of what the person is saying, even when the logic is absent or faulty. As a result, I can usually pick out the hidden flaw, and I don’t just pass it off and try to forget about it. I pay attention to it.

5. I depend on what people do rather than on what they say. It’s taken me many, many years to learn this lesson. Words are cheap. Actions are telling. Although my first inclination is to believe what someone tells me (after all, doesn’t it just complicate things to lie?), I’ve realized that my impulse toward honesty is not an impulse that most people share, and I step back. Way, way back. So, when someone says, “Hey, let’s get together,” I don’t get all happy and excited about it until we actually get together. If someone says, “I really care about you,” I don’t get all warm and fuzzy about it until the person actually does something to show his or her care for me.

Until I figured out that words are only as good as the actions that back them up, I let my emotions get pulled all over the place by the things that other people wrote or said. As you can imagine, my life is much more serene these days.

© 2010 by Rachel Cohen-Rottenberg

26 comments

My Path to a Strong Sense of Self, Part 2

November 11, 2010 Rachel Diagnosis, Disabilities, Judaism and Jewish Life, Privilege, Spiritual Beliefs

One of the oddest results of my Asperger’s assessment was my lightning-fast transformation from “regular human being” to “collection of impairments.” I really hadn’t changed at all from the minute before my assessment to the minute after my assessment and yet, the way in which the world saw me began to change in significant ways. And because the world began to see me differently, I began to struggle with my sense of myself all over again.

I’m not sure that I can explain to someone who hasn’t been through it, or who hasn’t watched a loved one go through it, the devastating impact of the way that people see autistics. The insistence on looking at us through the lens of deficit is so extreme that we begin to see “deficit” as key to the definition of who we are. I have difficulties with eye contact: deficit. I can’t read nonverbal cues: deficit. I like routine: deficit. I can’t do small talk: deficit. I can’t lie: deficit. I can’t be indirect: deficit. I’m blunt: deficit. I depend upon my lists: deficit. I stim: deficit. And on. And on. And on.

How dare anyone define us in terms of what we can’t do? In my worst moments over the past two years, I’ve felt like a piece of swiss cheese, recognizable only by what isn’t there.

So, what did I do to find my way back to a sense of wholeness? I started looking at my strengths. The truly mind-bending result was that, once I had the autistic label, even my strengths started looking like deficits. I’m gifted at discerning patterns and organizing the objects of space: Those are just splinter skills. I can focus like a laser beam on any task: I am inflexible. I am good with the written word: I’m overcompensating for my difficulties with verbal communication. I have a keen eye for hypocrisy: I just don’t understand the usefulness of social forms. I value my non-conformity: I just don’t understand the usefulness of social forms. I’m very good at discussing subjects of mutual interest: I just don’t understand the usefulness of social forms. I express empathy by asking what a person needs from me and then doing it: I just don’t understand the usefulness of social forms. And on. And on. And on.

At some point, my healthy sense of outrage began kicking in and, in addition to reclaiming my strengths as actual strengths, thank you, I began reclaiming my so-called “deficits” as actual strengths, too. I have difficulties with eye contact because I am so sensitive to the information coming at me from a person’s eyes. I can’t read nonverbal cues because I am so sensitive to the fullness of a person’s energy. I like routine because I’m an organized person. I can’t do small talk because I’m sincere. I can’t lie because I’m ethical. I can’t be indirect because I’m honest. I’m blunt because life is short and there is much to be done. I make lists because I’m responsible and don’t ever want to forget to do anything that someone, somewhere, might be depending upon me to do. And I stim because, in case someone hasn’t noticed, the world is a pretty noisy, chaotic place full of highly irrational people, and I just need a little soothing. That’s a problem?

It’s a lot of work to have to continually fight this battle against the impact of the autism discourse. And what’s most exhausting is the fact that every time I fight this battle, I’m reminded that words like deficit, disorder, impairment, and disease permeate most discussions about us. That’s when I’m back to feeling that something is wrong with me, something that the literature calls a pervasive developmental disorder rather than simply a difference. Gee, thanks. Just when I thought I’d defeated the demon of pervasive wrongness, there it is again, and this time, it isn’t just my abuser doing the talking. Well-respected professionals, loony-toon wackos, and everyone in between can all agree on it.

Wonderful. But here’s the way I look at it: If all that someone can see are all the things we can’t do, and all the things we aren’t, rather than all the things we can do, and all the things we are, I’m not sure I can do a thing about it except to refuse to participate.

That’s when I return to the pivotal moment on my healing path: I have a pure soul. If there is one thing that is pervasive, that touches everything I do, it’s the spark of the Divine in me, and that spark is far more powerful and far more valuable and far more sacred than anything else. If all that someone can use to describe me is the language of deficit, disorder, and impairment, that’s the other person’s illusion, not mine. I don’t have to take it on, and I won’t. All I can do is to stay clear in my mind that a society that defines people by what they can’t do is a society with a pervasive problem, and the problem isn’t us.

© 2010 by Rachel Cohen-Rottenberg

32 comments

My Path to a Strong Sense of Self, Part 1

November 11, 2010 Rachel Childhood, Judaism and Jewish Life, Spiritual Beliefs

Spoiler and trigger warning: In this post, I talk about having survived childhood abuse.

For the most part, having survived abuse is not a topic that occupies my mind very much anymore. I still have post-traumatic stress issues that I will probably deal with for the rest of my life, but they don’t inhibit my ability to navigate. I work with them or I work around them, depending on the day, and being able to do so has become a source of power and self-confidence.

In this post, though, I’ll talk about the abuse. I’ll talk about it because the abuse itself once threatened my ability to have any sense of self at all, and because struggling with its legacy has been the key to having a secure sense of who I am.

I was emotionally abused throughout my childhood. I was also physically abused from the time I was 4 until I was 19, and sexually abused from the time I was 11 until I was 19. The abuse stopped after I fled the scene, moving three thousand miles away to California. I no longer have any relationship with anyone in my original family, as my blood relations are either in denial or simply don’t care.

I want to say outright that I don’t have any kind of hierarchy in my mind about which form of abuse is “worse,” because for me, the only important dividing line is the one that separates being safe from being unsafe. For a long while, ranking one kind of abuse as worse than another became an exercise in minimizing and controlling my pain, and it was a great relief to stop.

I finally gave myself permission to stop over twenty years ago, after sitting in a support group with a woman who was actively recovering memories of the most hideous abuse imaginable. Each of us got a session in which to tell our stories, and when this woman told hers, everyone else in the group responded with a variation of, “I feel like I don’t even have the right to be sitting here with you. My abuse wasn’t nearly as awful as yours.” Her mindful, compassionate, and altogether accurate answer was, “There is no such thing as better or worse when it comes to abuse. Once someone forces us to cross that line, we’re all in this together.”

One aspect of her struggle that we all shared was the visceral sense that the abuser had somehow taken up residence in our minds, our hearts, and even in the cells of our bodies. Particularly regarding the sexual abuse, I felt that I would never be able to rid myself of the way it pervaded my awareness of my own being. For a long time, I felt as though the abuse were circulating through my body and that with every beat of my heart, it was making me feel dirty and broken. How could I possibly heal? How could I possibly keep up with the messages of self-hatred that were spreading inside me? How could I tackle them quickly enough to defuse their power? Having been born with a very healthy sense of outrage, I was very, very angry that the ugly messages seemed to have become an inextricable part of me, and I rebelled against them even when I felt utterly done in by them.

As it turned out, rebelling against them helped me see that the idea that I had been dirtied and broken was an illusion—that it was a feeling, not a reality. I came to this understanding through teachings from my own culture about the purity of the human soul. I know that not every culture has these teachings, and I know that there are many paths to healing. This one just happens to be mine.

Judaism teaches that we are each born with a pure soul, that we each die with a pure soul, and that nothing that comes between our first breath and our last breath can change that. At the core of this concept is the belief that when we are created, a spark of the Divine enters us and becomes the soul. Because the Divine can never be broken or made incomplete, the soul within us shares that indestructibility and wholeness. And so, whatever is done to our bodies, our souls are perfectly resilient and incorruptible.

As I meditated on these things, I came to feel that much of the evil that was done to me consisted of making me forget that I am perfectly fine. I have struggles, yes, but I am not the same as what has happened to me, what has been done to me, and what has terrified me. At the core of my being, through all the pain and confusion that clouds my path, I am separate from the storm, and I am perfectly whole. In these teachings, I found my connection to the Divine, not as a self-other relationship, but as a deepening sense of immanence, awareness, and shared existence. I am no longer religious, as I once was; I seem to have little need for most religious ritual or study anymore. My husband says that I’ve internalized it all, and I think he’s right.

For many years, I thought I’d never again have to struggle against that sense of being compromised, broken, and wrong. Then, I got the Asperger’s diagnosis. After the initial rush of “Yay! That explains everything!” came the second wave of becoming profoundly aware of the language of impairment, disorder, deficit, and disease that permeates most conversations about autism.

That’s when I started to really believe in karma. I don’t mean the idea of karma that says you get punished for something you did in a past life. I mean the idea of karma that says that each person comes into this life to struggle with and learn about a core issue, and that we keep getting the same lessons over and over in order to strengthen our understanding. For me, as for a lot of people, the question I’ve had to grapple with all my life is “How do I maintain my power when everything around me keeps telling me that something is wrong with me?” If you’re autistic and want to live a happy life, I think that this question is key.

In my next post, I’ll talk more about how I’ve grappled with it.

© 2010 by Rachel Cohen-Rottenberg

6 comments

Call for Submissions

November 10, 2010 Rachel Call for Submissions

An Anthology of Poetry and Prose by Autistics in Mid-Life

Please feel free to post this call for submissions to your blogs and social networks.

Statement of Purpose

I plan to publish an anthology of poetry and prose by people on the autism spectrum, aged 35 and over. I welcome all pieces of writing about your feelings about being autistic, your experiences, your sense of yourself, your view of the world, your work history, your relationship with your family, or any other area of interest to you. You can write about your life pre- or post-diagnosis, you can share your experiences as a child or as an adult, and you can take a personal and/or a political point of view. The possibilities are as varied as your feelings, perceptions, and life experiences.

I welcome submissions from those who are self-diagnosed as well as from those with an “official” diagnosis.

Deadline

To be considered for publication, your piece must be submitted by March 31, 2011 to rachel@journeyswithautism.com

Submission Guidelines

Submissions can be of any length, submitted by email, in plain text. If you wish to submit a piece in a language other than English, please provide a translation as well. The piece must be entirely your own work, and you must own the copyright.

The subject line of your submission should read SUBMISSION: The Title of Your Piece. The body of your email should read as follows:

Title
Your legal name
The name under which you want to be published. (You are welcome to use only your first name or a pseudonym.)
A brief biography
Your contact email
Your website or blog (if any)
Your piece

Rights

I will not retain exclusive rights to any submitted work, so you are free to publish your piece elsewhere and to submit published pieces to which you own the copyright. If your submission is chosen for publication, it will be incorporated into a book and sold for profit. I am not able to offer financial compensation to any contributor.

I reserve the right to edit any piece for spelling, grammar, clarity, organization, length, and stylistic consistency. I will give each writer the opportunity to approve the final version of his or her piece.

If your piece is accepted, you must sign a release form with your full legal name prior to publication. I will never release your information to any third party.

© 2010 by Rachel Cohen-Rottenberg

5 comments

Ten Questions That Make My Head Hurt

November 8, 2010 Rachel Ableism, Critiques of Autism Theories, Diagnosis, Empathy

Okay, so I’ve got some questions:

1. Why is it perfectly okay for a child to rock back and forth sitting on a swing, but not rock back and forth sitting on the floor?

2. Why is it perfectly okay for an adult to rock back and forth sitting in a rocking chair, but not rock back and forth sitting on the floor?

3. Why is it considered very romantic for two young people to rock together in a swing, but if they were to sit on the floor and rock together, others would very likely attempt to separate them?

4. Why is the ritual of lining things up considered a meaningless activity indicative of pathology, while the ritual of sitting for hours in a line of cars on the highway during certain weekends of the year is considered vital to observing a national holiday?

5. Why is hand-flapping considered an activity with no apparent purpose, while saying “How are you?” without actually meaning it is considered a necessary social skill?

6. Why is finger flicking called a stim while pencil twirling is called a cool thing to do when you’re bored in meetings?

7. Why is echolalia on the part of a single individual an indication of a disorder, while a ritual in which thousands of people obsessively repeat absurd statements such as “Obama wasn’t born in America” is an act of free speech?

8. Why is a passion for everything associated with Star Wars considered an unhealthy obsession, while a passion for everything associated with the New England Patriots is considered a sign of a loyal fan?

9. Why does perseverating on spinning objects buy you a trip to the developmental pediatrician, while perseverating on the debunked idea that vaccines cause autism buys you a spot on Oprah?

10. Why do neurotypical people accuse autistics of lacking empathy when we are not responsible for most of the bullying, warfare, and injustice in the world?

Do you have any answers? Or just questions that make your head hurt? Let me know.

© 2010 by Rachel Cohen-Rottenberg

37 comments

My Book Reviewed in The Commons

November 5, 2010 Rachel My Books, Spectrum Pride


My book just got a very good review in The Commons, our local independent weekly. The writer interviewed me by email, and I’m quite thrilled with her write-up. Check it out!

© 2010 by Rachel Cohen-Rottenberg

14 comments

Neurodiversity, Self-Determination, and the Magic Pill

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

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

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

44 comments

Speaking My Mind and Heart

November 1, 2010 Rachel Spectrum Pride

Every day, I do my best to speak who I am. So today, Autistics Speaking Day, I’ll just keep doing what I do.

I am Rachel Cohen-Rottenberg, and I am autistic. I feel liberated and vulnerable whenever I choose to say both of those things together.

I am the wife of a wonderful man, the mother of an awesome nearly-18-year-old daughter, and a great good friend to people near and far.

I am always working at something. I am a writer by nature and profession. I am an artist and photographer. I am an inveterate list maker and organizer. I am an abuse survivor and a Jew.

Any form of injustice has the dual effect of outraging me and making me want to cry. I am learning to channel both feelings into sustained action.

I am highly empathic and can find myself walking in the shoes of people long since gone. I can imagine how they felt, what they saw, what they did, what they feared, and who they loved.

I have always been this way.

I look at the natural world and wonder how it is that the trees and the plants know how to be oaks and maples and tulips and honeysuckle, each one unique, year after year. I have wondered about it since I was four years old and saw my first tulip open.

I haven’t the faintest idea why anyone would want to tell people to stay off Facebook and Twitter to “mirror autistic silence,” because unless I’m sleeping, I’m not silent. I speak with my writing, my art, my voice, my body, my laughter, my tears, my passion, my fears, and my acute sensitivity.

I am rarely silent, but I am often ignored. I used to rail against being ignored as a personal affront, but now I recognize it as an experience common to disabled people. It isn’t about me. It’s about the person ignoring me. I just keep on speaking, keep on singing, keep on telling the truth as I understand it. I keep on knowing that there is always more than one way to speak, more than one way to see, more than one way to hear, more than one way to think, and more than one way to love.

The worldwide community of autistics is my extended family. I am so glad that you are all here, speaking up. Over the past two years, you’ve given me my first sense of true belonging, and I thank you for it.

© 2010 by Rachel Cohen-Rottenberg

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