While talking about his new book Far From the Tree with Salon's David Daley, Andrew Solomon suggests that one of the questions we often ask about autism-- is it an illness or an identity?-- can apply to almost any human variation.
When, I was born being gay was an illness and in my adult life it’s an identity. And I don’t know which of the categories I’ve written about will make that switch to what degree at what time. There’s no crystal ball. But I do have the feeling, very strongly, that these are fluid categories, and what’s true right now is not the same as what’s going to be true in 10 years or 20 years. And, I just think that people are sometimes naive about the prejudices and positions and attitudes of their time, and don’t realize how much all of these things are subject to flux...
My work on the deaf (for the New York Times magazine) was really my taking-off point. It had never occurred to me at the time that there was such a thing as deaf culture. The whole thing was a completely foreign idea to me. I was quite shocked when I’d got out among deaf people and they didn’t experience themselves primarily as lacking hearing; they experienced themselves primarily as having membership in this culture by having sign language. Now some of them liked that culture, and were thrilled to be part of it, and some of them were less enthusiastic about it. But they all had a sense that they were part of something cultural.
I thought, okay. Many of them felt that it was their culture and they liked it. And one does like one’s culture, by and large, by some degree or measure. So would my life have been easier if I weren’t gay? Yeah, it would have been in a lot of ways. And there was a period in my life when I might have wished to make a switch. Now, it’s not that I think that being gay is the most amazing, wonderful thing in the world, but I have a husband; I have a life; I have friends who I’ve met through this. It’s who I am. …
And I was thinking wow, who knew? Well, I guess a lot of people knew — but I didn’t. I thought if the thing that I called an illness is experienced by many of the people who are living it as an identity, and if I myself had the experience of having my way of being called an illness and have come to think of it as an identity, then what else can fall into these categories? My feeling in the end is that everything can be described as both.
If you look at the language of illness you can use it to describe race — you could experience race as an illness. You can experience income level, at many different levels, as a form of illness. You can experience age as an illness. I mean, it’s all got an illness component.
What do you mean by that?
An illness component meaning, essentially, a component of it appearing to be socially undesirable in certain contexts, and handicapping and preventing someone from doing things they might conceivably want to do. And I thought you can also experience everything as an identity. Obviously the things I just listed are generally considered identities and I’ve described them as illnesses.
When you demand that disabled people work to pass as able-bodied or neurotypical at the cost of sacrificing supports, services, and accommodations that mark us as divergent from those with dominant abilities and neurologies, you are forcing disabled people to hold themselves to impossible and destructive standards.To say that the ultimate goal or outcome for a disabled person should be a life with as few supports as possible is to deny the reality of both the disabled person's needs and abilities. In the case of a Deaf person, for example, the ultimate end of that suggestion would be forcing Deaf people to cease to communicate in Sign and to learn oralism even at the expense of comprehension and effective, reciprocal communication solely for the sake of appearing at first glance to fit more neatly and conveniently into the fabric of a majority hearing society without regard for the language and communication that come naturally to the Deaf person.The suggestion that the ideal outcome for disabled people is a life with as few supports as possible is one deeply rooted in ableist attitudes—namely, the idea that it is bad and shameful and negative and unfortunate and pitiable and tragic to require supports outside the norm or outside of what is typical for those in the dominant group. But what's shameful about having a note-taker accompany you to classes? Or having flexible work hours or a telecommuting option? Or having additional time between tasks? Or using an alternative or augmentative communication device? The only shame and stigma that exist are societal constructs embedded in systemic, institutionalized ableism that colors our attitudes. And if there are shame and stigma attached to having visible or conspicuous support needs, it seems far more logical to combat the attitudes that create this shame and stigma than to urge disabled people with support needs to avoid using any overt or noticeable supports.
Nicky Clark was shocked that programs designed to kill disabled people were not part of a recent BBC documentary that discussed the Nazi eugenics regime, so she wrote this article detailing a painful, shocking history which is often ignored:
As the Nazi stranglehold on Germany rolled forward, on the 14th of July 1933 the Law for the prevention of Offspring with Hereditary Diseases made sterilization of disabled people compulsory.
The Nazis so enamoured by their myth of racial purity were also terrified by the notion that disabled people were thriving and would eventually dominate, thereby “polluting” the gene pool and exterminating their myth of perfection. Using Social Darwinism in its most sickening form they began to murder disabled children by lethal injection. This was a slow process, so they perfected a method of gassing children and the mobile gas vans began rolling up to the institutions and sanatoriums special schools and clinics. Parents whose disabled children lived at home were lied to. They were told their children were going to receive dedicated treatment to help them.
Estimates suggest that 5000 disabled children were murdered in total.
It's hard reading, but important. I hope we are all made uncomfortable by the similarity between how these programs were justified to the German people and current advertising campaigns emphasizing the cost of autism:
German children were taught to hate in their lessons. A typical mathematical question posed to millions of German children would be how much it might cost for a disabled person who didn’t work and occupied a hospital bed when there wasn’t enough money for wounded soldiers or new homes to be built. Ad campaigns featuring pictures of disabled people asked “why should disabled people take bread from decent non-disabled German mouths?”
Or the hearts from their chests, right?
Via John Greally.
Not surprising, but heartbreaking. Disabled students are almost twice as likely as other kids to be suspended from school, and Black kids who are disabled are twice as likely to be suspended as other disabled kids:
According to a new analysis of Department of Education data, 13 percent of disabled students in kindergarten through 12th grade were suspended during the 2009-2010 school year, compared with 7 percent of students without disabilities. Among African-American children with disabilities, which included with learning difficulties, the rate is even higher: one out of every four was suspended at least once during that school year.
The good news is that there are districts who are doing a better job:
“What’s most interesting is not who is suspending kids, but who isn’t,” said Diane Howard, staff attorney for juvenile justice and education for the National Disability Rights Network. “We want to take this report and say we know that viable alternatives exist and school districts and states both rich and poor are choosing not to suspend kids, so it’s not inevitable. So how do we get the districts with high suspension rates to learn from that and change their practices?”
Dan Savage is proof that one person can do both great good and great harm. He's one of those gay people who has made his name in large part by criticizing other gay people and members of other minorities for the entertainment of a mostly straight, white audience. But, by showing that audience that a gay man could lead an exceptionally intelligent and helpful discussion about such a basic topic as sexuality, he has probably done as much as any other individual to make straight people realize that gay people can be cool, fun, and useful. His low point for me was his blog post which appeared to many people to blame black voters for the passage of Prop 8 in California. Since then he has mostly been working for good, and I think the impact that his It Gets Better project has had for the acceptance of gay youth cannot be overstated.
It is not surprising that Dan's self-destructive need for notoriety, which led him to claim that he licked staplers and doorknobs in an effort to give presidential candidate Gary Bauer the flu, is showing up again. This spring, he included a wildly inappropriate riff about the Bible in a speech to an audience of high school students. And now he has written and directed a raunchy drag comedy based on the story of Helen Keller:
Offensive? Well, of course. That's sort of the point. And it's not that Savage doesn't warn us, right up front. As the audience walks in, there's a giant written announcement up on stage that warns "this play will be deeply offensive to the deaf/blind community, so please don't tell them. Keep your hands shut!"
It's called "Miracle!" and I hope this is the worst part:
The first time we see Helen perform is one of the most- cringe worthy and funny bits you can expect to see on a Seattle stage all year. She can't hear the music and she can't see the stage, so you can imagine what her dance routine must be like. Or then again, maybe you can't. Let's just say, she has to wear a dog collar that zaps her whenever she gets too close to the edge of the stage. It's so politically incorrect, it takes your breath away.
It's hard for me to find humor in a disabled person being shocked for punishment when it is still happening every day at the Judge Rotenberg Center.