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
This bothers me. It feels like we’re saying, “Go ahead and celebrate, but not too loudly.” Why? I was a driver for the Disabled Services division of the transit facility in my college. I transported severely disabled folks everyday, to and from classes, or whatever. And YES I mean severe. One man was a quadriplegic on a vent, much like Christopher Reeves. Another man was wheel chair bound, and living with severe Cerebal Palsy. It made it difficult for him to speak, write, and care for himself. There were lots of stories like that in the 4 plus years I worked there. They were wonderful people, and my experiences with them were life changing to be sure.
If you want to see them celebrated, then write stories about them, put them out there, scream it from the roof tops. But why do we have to tone it down, for those of us not as severely affected? The fact that someone writes a story celebrating the accomplishments of one person, disabled or not, is not in any way a statement about anyone else. If I write a post letting people know that people on the Spectrum can achieve and be successful in a conventional sense, it’s not an indictment or shunning or intentional marginalization of those who can’t or don’t.
Why can’t we just be out there and be loud about everyone? Why do we have to be quiet about one group, but not the other? A friend of mine has a child with a speech delay. They’ve been waiting and waiting for him to say something and the other day he finally did. I shouted from the rooftops when she told us! Cheered it on FB, the whole 9 yards. If I can be loud about a child finally saying the word “friendship”, why can I not be equally loud about my Aspie friend the author?
I don’t get it.
Hi Laura,
I’m not saying that we can’t literally be loud. My comment about being loud and raucous was a metaphor. Perhaps an ill-chosen one?
What I’m saying is that we should be careful about not taking up all the space. I’m saying that I want to show the full spectrum of disability, and when I say that, I really do mean all of us–not just severely disabled people, and not just not-so-severely disabled people. I don’t mean that anyone should tone it down and get small. Not at all. I mean that there ought to be space for other people, too, and that we ought to take some care about how we’re defining worth. If the only “success” stories are conventional ones, too many people get left out.
I don’t think that disability magazines and sites should just be profiling people who are “making it” in conventional ways. I think they should be profiling everybody. And they’re not.
A very thought-provoking post.
My aim in blogging was always to demonstrate that things can be done without compromising ones identity. I wanted to prove that someone didn’t have to come off the spectrum and didn’t have to change to be successful but I guess I’m just as guilty as others for promoting inspirational “achievement” stories over inspirational “non-achievement” stories.
There are good reasons for this;
1. As the writer of my own blog, my own stories (and those of my family) are all that I have. I don’t have anyone who is more intellectually disabled in the family to draw stories from – If I did, believe me, I would.
2. When you’re trying to change the beliefs of neurotypical people so that they get a feeling of “worth” for their children and for people on the spectrum, you have to aim for achievements that they can understand. These of course, are success stories.
3. There’s a fairly large amount of resistance to stories which don’t have “amazing and uplifting endings”. Just look at what happens when Hollywood tries to put out a film with a downbeat ending – usually they have to change the ending before release or fill the rest of the film up with unbelievable saccharine just to compensate.
The best thing that parents who see the positives of their children with greater obstacles can do is to write about them. Ok, so maybe your child can’t verbalise or can’t write. Surely that makes it the parent’s job to be the advocate. You know that your child has worth regardless of their lack of neurotypical achievements – shout it to the world because we all want to hear!
Hi Gavin,
I think that we all need to write from our own experiences in order for our work to be genuine. So I don’t at all fault people for that. It’s what I do, too.
In this post I’m talking about the larger autism/disability community, and the ways in which people get excluded. I’m not trying to guilt anyone here. I’m just trying to shine a light on a problem that makes severely disabled people and their families even more marginalized than they are already.
Thank you for this post. I can relate to a lot of wha tyou write, on both sides of the story. I am pretty significantly impaired by my disabilities, and hence often feel left out of the disability community because of so-called “inspirational” stories. Yet I myself do constantly judge myself by my accomplishments, my intelligence, etc. That is a form of internalized ableism.
Hi Astrid,
Yes, the internalized ableism can really run a person ragged. As my auditory processing problems get worse and worse, I find myself having to undo so many of my internal “shoulds”: I should be able to speak wherever and whenever I want, I should be able to listen for extended periods of time, I should be able to relate to people on their terms, speaking is better than typing, listening with my ears is better than reading an email, and on and on and on. It’s quite distressing to watch it roll. And it’s quite a piece of work to set about undoing it.
Thank you for writing this post, Rachel. I have been focused on just my own child’s needs for so long that I am only now beginning to examine these types of questions and ideas, and I am learning so much from you and the other bloggers I have been reading lately.
I wonder if many of the parents of children who lives are more severely impacted by disability use so much of their energy not only caring for their children, but also advocating for them with the insurance companies, the government, the schools, the doctors, and just don’t have the wherewithal to get their voices heard in a larger forum.
I was curious whether you had seen anything about the movie “Wretches & Jabberers.” The trailer is very intriguing (it’s at http://www.youtube.com/watch?v=8eKVUIiQlpg) and there is a brief description on that page as well. I am hoping to be able to see the film at some point.
Another interesting film is called “Including Samuel” and is a look at the importance of including people with various disabilities and levels of difficulty in the community instead of keeping them separated somehow.
Hi Aspergirl Maybe,
I think you’re right; the sheer level of energy and exhaustion is very high for a lot of parents. But what I’m seeing is that even when parents try to explain the situation to others in the community, they just don’t get heard properly. People are frightened to look at severe illness and disability. As long as they can look at people who seem to be “fitting in,” there’s a certain sense of safety. It’s an illusion, of course, because anyone can become severely disabled due to illness or injury. Ignoring the ones who are won’t change that. But we human beings like to cling to our illusions, God knows.
I hadn’t heard of either of the films you mention, but I will look into them. Thanks!
The last thing we need is a “divide and conquer” situation where the advocates of the severely impaired and those who are moderately impaired (and can advocate for themselves) are at each other’s throats. Those of us who are mildly impaired and therefore “inspirational” understand more than anybody that for the grace of God we could have been more severely affected. I even think of my own Asperger’s not so much as a disability as it is a “different” ability. (I hate the way that sounds, so PC). But I can certainly empathize with those further along the Spectrum. Lifting them up does not invalidate my own struggles, or those like me. Furthermore, all humans have intrinsic worth that is not derived from their abilities or disabilities. We can celebrate achievement without ignoring those who cannot achieve. We don’t need a Suffering Olympics whereby if your profoundly autistic child takes a gold medal for impairment, I can only hope for a bronze or silver; or where I take the gold for achievement and you get stuck with honorable mention. Instead let’s recognize diversity within our community.
Beautifully said, John. I agree with every word.
Another comment. A good film about a high achieving Aspie is called “Adam.”
Rachel, thank you from the bottom of my heart. You have spoken so eloquently. I don’t know what else to say, I feel a bit emotional now. Thank you.
Laura, I don’t want you to ‘tone it down’ at all! To continue the metaphor: I want to ‘turn up the volume’ of people with learning disabilities, not ‘turn down the volume’ of people with Asperger’s, so the spectrum is seen as a whole, each part worthy of equal celebration and respect.
Thank you, bbsmum! Your post gave me so much to think about.
Thanks for this post, Rachel. I’ve been thinking about bbsmum’s post too, having recently seen Temple Grandin and contemplating the “different, not less” theme in that context.
People had a hard enough time with the “not less” part with Temple, so extraordinarily gifted. When those extraordinary gifts aren’t part of the equation — somehow compensating for whatever the “different” might be — the “not less” thought becomes a tough sell, a fundamental change in attitude. I have to keep catching myself on it in little ways with my own daughter! So much in our society is built upon comparisons, judgements about who’s doing better than whom (or who IS better than whom), who’s winning and who’s losing. No wonder we’re programmed to like the success stories…
Agreed. The Buddhists say that comparing oneself to others in the hell-realm. More wisdom from the ancients!
I didn’t comment on this right away because I was trying to put together a thoughtful rather than a quick response…and then work ate my life and I didn’t realize it had been two weeks…anyway.
I have this conflict every time I play up my accomplishments, to myself or to others. What I want is that people who know me, who see what I’ve done and what I’m capable of, to use that knowledge to *not* make a snap judgment about somebody else with Asperger’s or autism based on stereotypes or misinformation. That they pause and don’t assume that somebody is incapable of any given thing only because they’re autistic, or that somebody doesn’t think or feel or love just because they’re inexpressive. That maybe they give someone a chance at a job, or a friendship, that they otherwise wouldn’t have because they’ve had their preconceptions of what autism really is challenged.
What I never want is for anyone to think “she did it, so everyone should be able to,” because that’s just not reality, and because no one should have to prove the worth of their life against someone else’s external and arbitrary standards of success. I spent my childhood being made to feel stupid and worthless being told “the other kids can do it, so you should be able to,” and I never want my example used to do that to anyone else. And because what other people don’t see is that what I’ve done is only what I’ve had to do to survive–it may look more impressive, but there’s really no more virtue in what I’ve done than in what anyone does to make life bearable. I’m proud of it, sure, but it’s particular to the way that I have to life.
All beautifully said, chavisory!
I have seen what you are talking about and it makes me sad. I hope that when people see the “higher acheivers” that their awareness goes up at least a notch. I think that the higher functioning people can help show the world what chavisory mentioned in her post.
Thanks for writing this. I really appreciated it. As someone with a NT sister (who is hard to compete with by anyone’s standards) I am sick of getting pity from people every time they come to the discovery that I’m the “stupid sister” as they seem to think.
I am also having a very hard time in deciding some of my life goals. Part of me wants to do something really difficult and be one of those people who has this great story of really achieving something societally worthy. However, I also want to be me and do things I’m good at regardless of how society views them.
Hi AspieFeminist: I’ve found that the core strength comes from deep within. So if you want to do something big and difficult because it fills you up and makes you feel whole, go for it. If you do it to gain acceptance from the big wide world, that’s not a bad thing, necessarily; it’s a natural thing to want, especially when you’re young, and especially if you have the skills to do it.
Whatever path you choose, though, do your best to stay in control of the process, because it all takes a lot of energy. I went after acceptance in the eyes of the world when I was younger, and I don’t regret it. I mean, that was my life, and everything I’ve done has brought me to where I am now. But I can’t help but feel regret about the way I went about it–full bore and without much self-care. Make sure that you have someone to guide you in taking care of yourself.