Archive for Community

Holding the Space for Others

February 13, 2011 Rachel Community, Happiness, Spiritual Beliefs

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It was music to my ears.

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

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

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

© 2011 by Rachel Cohen-Rottenberg

38 comments

Visibility and Human Worth in the Disability Community

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

…

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

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

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

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

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

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

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

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

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

© 2011 by Rachel Cohen-Rottenberg

20 comments

Welcome Among Us, My Friend!

January 12, 2011 Rachel Community, Friendship

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

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

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

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

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

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

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

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

© 2011 by Rachel Cohen-Rottenberg

11 comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2011 by Rachel Cohen-Rottenberg

75 comments

Self-Advocacy Begins at Home

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

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

December 1, 2010

Dear Ms. Graham,

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

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

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

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

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

Sincerely yours,

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

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

© 2010 by Rachel Cohen-Rottenberg

14 comments

Vermont Culture: A Dream Come True

November 18, 2010 Rachel Community, Honesty

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

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

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

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

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

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

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

I think so. Ayup.

© 2010 by Rachel Cohen-Rottenberg

41 comments

Speak Up on November 1st!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Raise up your voices. Let us be heard.

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

© 2010 by Rachel Cohen-Rottenberg

46 comments

“I’m Ignoring You Because I’m Just So Terribly Busy!”

October 18, 2010 Rachel Communication, Community, Parenting

Are you sick of the “I’ve just been so terribly busy!” excuse for rudeness? Do you have the uncomfortable feeling that it’s just another form of rudeness? You’re not alone.

Yesterday, I felt like I was up to my eyeballs in this kind of discourtesy. Two situations came together at just the same moment. Both scenarios involved, I kid you not, offers that I made to help others in the community. For free. Yes. For free. Just because it seemed like a good thing to do.

In the first case, I’ve been asking to help out at a place in town since February. Every couple of months, I send the guy in charge an email, reminding him that I’m available to help–for free–and I inevitably get a response along the lines of “I’m just so terribly overextended, and I’ll get back to you soon” and then, I hear nothing. Two months later, I write another email, asking why I’m being ignored and restating my interest in helping out with my highly paid professional skills–for free–and I get much the same response. Sometimes, he throws in, “You know, I’m ignoring a lot of other people too, so don’t take it personally.” It makes me feels so much better to know that other people are being treated equally rudely, don’t you know? And did I mention that I’m trying to help the guy from being overextended by offering my skills? For free? Yes, I am.

The second case involves an individual I was going to do some work for—again, for free. I’ve emailed three times, offering my help. The first time, the other person said, “Email me again in three weeks.” I did. Twice. When I finally said, “You know, if you’ve changed your mind, you can just tell me,” I got back an explanation of how the person was just so terribly busy, and my email just got left on the back burner, because their kid is applying to college, and everything is so hectic, and so on, and so forth, and could I come over on Thursdays? Wha-hah? Did I mention that I spent last weekend providing support and comfort to my own daughter as she worked on her college application essays? And that I still managed to find the time to actually be courteous to people who asked me things? And that even when I was working full-time and homeschooling, I kept track of who needed a response and made sure that no one got left behind? I did.

And do you know why I did? It’s simple: because I was raised that way.

My parents taught me that if someone offers to help with something, or wants to get together, or asks you a sincere question, you get back to the person in a timely manner. My grandfather’s immigrant parents raised twelve kids in a tenement, so they were a little busy and stressed out, you know? And yet, they weren’t too busy and too stressed out to instill this teaching in their children. My grandfather passed this teaching to my mother, who was in agreement on the whole concept with my father, and they passed it on to me. As you know, my parents were about four or five cans short of a six-pack, and yet, even they understood the concept of consideration for the time and the feelings of others.

When I was a kid, I learned all the social rules. I observed them, I listened to people talk about them, and I followed them. And then, at some point, when I was focusing on something even more fascinating, all the rules changed and no one sent me the memo. These days, as far as I can tell, the rule is that you can disregard the value of someone’s skills, time, feelings, and goodness of heart just because you’re busy. It’s the all-purpose explanation. Surely, you understand?

This weekend, I really thought I must be nuts. I felt like the only person left on the planet who even uses words like “rudeness” and “courtesy” in a complete sentence anymore, and the only human who considers them to be something more than the ancient relics of a bygone civilization. I started wondering who was upside down—me, or the world?

So I said to my husband, “Am I nuts?”

And my husband said, “No, honey. You’re not nuts. The world has gone crazy.”

I told the story to a friend on the spectrum this afternoon, and she had the same response. She just couldn’t understand the idea of leaving someone hanging for months on end without an update or an explanation. Neither can I.

I’m old-fashioned, I know. And I suppose that there are people out there who will pathologize my desire for courtesy as a symptom of being neurotically attached to rules and consistency. Well, guess what? That’s how civilization goes on, people. Rules and consistency. Otherwise, you have chaos. You have callousness. You have gross insensitivity to the feelings of others. You have bullying. You have the survival of the fittest.

You have the world we live in.

© 2010 by Rachel Cohen-Rottenberg

34 comments

How Do You Feel About Coming Out?

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

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

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

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

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

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

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

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

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

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

© 2010 by Rachel Cohen-Rottenberg

31 comments

A Strangely Ordinary Life

July 28, 2010 Rachel Belonging, Community, Happiness, Loneliness

Something extraordinary has happened: my life feels ordinary. And I mean that in a good way.

Part of the reason is that my withdrawal from the evil benzo continues to go well—not always easily, but well. I’m now down to .4 mg per day. On Monday, I started using the liquid version of the medication, so I don’t have to split my teeny tiny pills into quarters anymore. I am so relieved. I take just one drop in a bit of applesauce, four times a day, and instead of cutting my dose every week, I’m now cutting my dose every three weeks. From what I understand, I need to go slowly from .5 mg to zero because my brain is waking up, and it’s important that it wake up gradually, rather than all at once. So, I’ve made myself a reasonable schedule, my doctor is supportive, and I should be off the meds by the end of the year. Can’t wait…but I have to.

Having tapered off the medication by more than 1.5 mg, I feel alive again. I still have my sensory-sensitive “I don’t-want-to-go-anywhere” days, but even on those days, I force myself to go out for a walk in a quiet place, just to keep my connection to the world intact. I’ve finally figured out that my connection to the world is not limited to the world of human beings, but to all of creation, so I walk and appreciate the trees, and the colors, and the breeze blowing, and even the incredibly humid weather. I carry my camera with me everywhere, and I’ve been taking lots of pictures, which helps me to see hidden things, simple things, beautiful things that I’d never registered before. Suddenly, the world has become one amazingly interesting place. I’ve also started drawing and painting, so my eye is growing keener by the day.

But the med withdrawal only explains part of it. Mostly, I’m having an experience that I can only describe as an ever-deepening sense of being fine just as I am. I don’t feel inclined to explain myself, to justify my earplugs, to overcome my lack of small talk, or to pathologize my fascination with the visual world. I don’t feel that I have to stay anywhere any longer than it works for me, or apologize for what I can’t do, because after all, who can do everything anyway? No one I know. Far from it.

Above all, I seem to have made a surprising amount of peace with my essential aloneness. I’ve been reading a book called The Wounded Healer by Henri J.M. Nouwen, and it’s been giving voice to many things I’ve been feeling for a long time. The book is written from a Christian point of view, which makes parts of it very hard going for me, but there are moments in which the author’s theology falls away and the book just sings to me. For example, Nouwen writes that the condition of every human being is to be lonely, and that if we don’t accept our loneliness, we make all kinds of demands of the world that leave us wrecked. From his perspective, the only thing to do is to embrace this loneliness, knowing that it is the experience of all people, and to let others know that they are not the only ones. This task, in and of itself, is a terribly lonely one. Like the bodhisattva who cannot share his experience with many and yet allies himself with all, the person who embraces her loneliness knows that, most of the time, most people are trying desperately to flee their own.

This insight echoes what I’ve long felt: that being autistic, I am no more lonely than anyone else, but that others have many more social opportunities to run from their loneliness than I do. I have to face my aloneness, whether I want to or not. When the day is done, though, and the darkness comes, and people return home to empty houses and the privacy of their own souls, we share a common experience. In describing the life of the minister, Nouwen could very easily be describing our lives as autistic people:

“The painful irony is that the minister, who wants to touch the center of men’s lives, finds himself on the periphery, often pleading in vain for admission. He never seems to be where the action is, where the plans are made, and the strategies discussed. He always seems to arrive at the wrong places at the wrong times with the wrong people, outside the walls of the city when the feast is over…The wound of our loneliness is indeed deep. Maybe we had forgotten it, since there were so many distractions. But our failure to change the world with our good intentions and sincere actions and our undesired displacement to the edges of life have made us aware that the wound is still there…When someone comes with his loneliness to the minister, he can only expect that his loneliness will be understood and felt, so that he no longer has to run away from it but can accept it as an expression of his basic human condition.” (86-92)

These words just knocked me out, in the same way that discovering my autism knocked me out. In both cases, my life suddenly came into focus, and I found a mirror in which I could recognize myself. Now, I no longer go about my daily life looking for the magic key, or the decoder ring, or the person who will unlock the mysteries of the world so that I can enter. I’ve already entered. I’m here. The world belongs to me, as it belongs to every other creature that exists, and I experience things essential to being human. So now, I enjoy my forays into the world. I go to the co-op to buy a few items of food, and I no longer dread it. It’s still not easy to go food shopping. I still have to block my hearing, communicate with my “I can’t hear you” cards, and limit my time and energy so that I don’t overdo it. But somehow, all of that is all right. I look forward to buying food that nourishes me, being kind to people, and enjoying the walk.

I’ve also been going to the art store to buy supplies, and it’s fun. Yes, fun! Yesterday, I ran into two autistic friends there. It felt so good to know others, and to be known. I took out my earplugs a bit and talked. We didn’t talk for a long bit. I know when I’m reaching my limit, and I respect that, and lo and behold, other people do, too. And later on, after I’d looked at every mat and picture frame in the store, I made a bit of conversation with the lovely woman at the cash register, who looked at everything I was purchasing and said, “It looks like you’re going to go home and have fun!” And she was right. I said, “I love coming here because it’s fun to see everything you have, it’s fun to pick out what I want, and then it’s fun to go home and use it!” She seemed pleased. And then I went home, and I rested a bit, and then I got to work framing some photos.

How did I feel? Was I tired? Was I overloaded? Probably. But it was okay anyway.

What’s come into focus for me is that my challenges, my tiredness, my loneliness, my sadness, my confusion, and my fear are nothing extraordinary. When I was measuring myself against an ever-elusive norm of “happiness,” I kept rebelling against all of my so-called “negative” feelings, waiting for them to just go away so that I could be happy. And now I’m happy, precisely because I don’t want them to go away. When they come, I accept them. I even embrace them from time to time, because everything I feel is human, and everything I feel is the lot of every person. And when they go, I accept whatever replaces them. As Nouwen writes so beautifully:

“Many people suffer because of the false supposition on which they have based their lives. That supposition is that there should be no fear or loneliness, no confusion or doubt. But these sufferings can only be dealt with creatively when they are understood as wounds integral to our human condition…No minister can save anyone. He can only offer himself as a guide to fearful people. Yet, paradoxically, it is precisely in this guidance that the first signs of hope become visible. This is so because a shared pain is no longer paralyzing but mobilizing, when understood as a way to liberation. When we become aware that we do not have to escape our pains, but that we can mobilize them into a common search for life, those very pains are transformed from expressions of despair into signs of hope.” (93)

Somehow, his words have had this mobilizing effect on me. Hopefully, as autistic people, we can search for life together, in all its fullness, knowing that we each walk alone, and we all walk together.

© 2010 by Rachel Cohen-Rottenberg

9 comments
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