Friday, April 29, 2011

Supercrips make each other sad

(WARNING: This post talks about internalized ableism and suicidal thoughts)

When people hate themselves for having difficulties that I also have, or feel proud of themselves for not having to ask for help in ways that I ask for help, I have trouble knowing how to feel. It’s difficult to pull apart self-hate from the implied hatred for other people like me. It’s hard to work out how personally to take these statements.

You know how sometimes able-bodied people say to people who are visibly physically disabled, “If I was in your situation, I’d kill myself”? Obviously the disabled people feel hurt, because no one likes being told that their life isn’t worth living. It’s easy to figure out the ethical implications of that comparison when it’s a non-disabled person saying it to a disabled person. But what about, “I am also disabled and I fear that I may soon be in your situation and then I would want to kill myself?” “I am in your situation and I want to kill myself?” “People like us deserve to die?”

It’s hard not to take that personally. It’s hard respond just to the other person’s pain, and not the implications of someone else’s self-hate with regard to my disability and my life.

The idea of the supercrip hurts us all. Growing up in a society which teaches us that the only good disabled people are the ones who overcome, who never give up, we are set up for failure because eventually we will have to rest and we will have to give up. But other people lay this expectation on us again and again, and tell us yes you can do this when the continual trying is tearing our heads apart and we are begging to stop. And even though we can feel in our bodies that we have reached a limit, somewhere inside us there’s a little voice that tells us, you’re making it up, you can do this, you’re worthless if you can’t do this, why do you think you deserve accommodations, why do you think you should get to feel safe.

And this little voice gets louder and louder, and eventually the only options are being Not Good Enough or being dead, and a lot of autistic people I know sometimes lean toward being dead. Because being raised with this idea means making it a weapon, and using it to hurt ourselves, and using it to hurt each other.

Tuesday, April 26, 2011

Assault on Credibility

Earlier today I was listening to a Radiolab podcast about War of the Worlds. Aside from the fact that I am a gigantic nerd, this was interesting to me because I am fascinated with issues of deception and belief. So I was interested to learn that, many years after the War of the Worlds radio play aired, Orson Welles admitted that it wasn’t an accident that people took his story of a Martian invasion literally – he had intended to deceive them. “We were fed up with the way in which everything that came over this new magic box, the radio, was being swallowed,” he said. “So in a way our broadcast was an assault on the credibility of that machine.”

As a credulous person, I found that statement kind of devastating. Not because I tend to believe news media, but because I tend to believe individual humans. And when I find that someone has been lying to me, it has the same effect – an assault on credibility.

When I hear about the panic that followed the War of the Worlds broadcast, I don’t laugh at the people who believed that aliens had landed in New Jersey. I think about how, as a child, I would believe similar stories that were told to me by other children. In several incidents spanning from pre-K to middle school, friends told me that they could tell time on invisible watches, that they had seen fairies, that they could access an alternate reality. In sixth grade, one of my friends told me that it had been revealed to her that she was not human. Each of these stories left me in an agony of guilt and confusion. I wanted to live in a world where words had consistent meaning, where people told me the truth, where I never had to doubt my friends. It was becoming apparent to me that I didn’t live in this world, but I didn’t know how to stop believing people.

Actually, I still don’t.

The Orson Welles quote struck a nerve with me today because currently, I’m worried that a friend of mine has been manipulating me. This means that I’ve been thinking a lot about trust and credibility. I’ve also been thinking about Lola.

In high school, I hung out with a group of misfits and nerds, and in my senior year we were joined by a freshman who I’ll call Lola. Lola was often quite friendly, and she was very open about her life. She told us that she had several medical conditions, had been a model, had lived in Japan. She had an abusive ex, a dead ex, had done hard drugs and taken classes at Brown. She was maybe thirteen years old.

She became attached to me, and started dating a friend of mine, who is also disabled. Looking back, I can’t help but feel that she took advantage of our hard-wired tendency to trust. Because even when her stories became started to contradict each other, we didn’t turn away.

I didn’t start to question what Lola told me until we were in the same group on an overnight field trip that my school organized. During the course of this trip, Lola told me so many increasingly implausible horror stories about her life that I found myself in a crisis of faith. I returned from this trip emotionally exhausted and visibly upset. On principle, I believed (and still do) that it’s better to take people at their word when they tell you that they are disabled or have been abused. But I was having difficulty believing the things that Lola told me. I couldn’t figure out if she was telling the truth, and I was an asshole for doubting her, or if she was lying to me and I was stupid for believing her.

I consulted my parents, who told that it made sense to doubt the stories that Lola had told me. As gently as they could, they explained to me that sometimes people lie even about very personal things, and that sometimes it’s okay to disbelieve something that you would normally take seriously. Later that year, one of my friends’ parents called Lola’s parents to express concern about her medical problems. Lola’s parents were flustered and confused – there must have been a mistake, they said. Lola didn’t have those conditions.

My experience with Lola was mild – she didn’t abuse me or trick me into giving her money, and we weren’t even very close friends. But when I remember how she manipulated me, I still feel hurt and confused and ashamed. It’s the feeling of being the only kid who looks at the ceiling when told that the word “gullible” is written there. When the laughter starts, that’s when you learn that people who believe are suckers, dupes, are asking to be hurt.

I’ve written before about how frustrating I find it that jadedness and skepticism are seen as hip and intelligent, and belief – in statements, in people, or in ideals – is seen as uncool and stupid. Obviously I think there’s ableism in this idea, because some disabilities can cause people to be credulous (or as the literature might say, “na├»ve” or “overly trusting”). But it also bothers me because society tends to err on the side of disbelief in cases when I think people should err on the side of belief – such as when someone says they have been sexually assaulted, or talks about experiencing discrimination. Even though I’ve experienced people lying about these things firsthand, I still think it’s much more common for people to tell the truth but be disbelieved. So I get mad when I see media portrayals of people lying about rape or faking disability, because in real life rape survivors and disabled people get accused of faking it all the time, and I don’t think that’s right.

So I’m left in a difficult situation. I’m hard-wired to believe, and ethically I suppose I am pro-belief, but at the same time I know that sometimes people lie and that sometimes believing people means you will be used or hurt. I don’t want to be the cold-hearted skeptic who believes that ADHD was invented by Big Pharma, and I don’t want to be the dupe fleeing the Martian invasion. Is there a middle ground here?

If I figure it out, I’ll be sure to let you know.

Saturday, April 16, 2011

Headlines: Abuse and Empathy

(WARNING: this post discusses child abuse)

We are two weeks into Autism Awareness Month and I count three casualties so far. Two stories in the news this week, of three autistic children murdered or abused by their parents and caretakers.

In Washington, two autistic boys (ages 5 and 7) were discovered locked in a cage, where their father and his fiancee kept them every day, in unsanitary conditions. They weren't allowed to walk around the house or to go to school. I don't know their names. Their father, John Eckhart, told police: "What am I supposed to do? Let them run around the house? They're autistic."

In Massachusetts, Kristin LaBrie was found guilty of "attempted murder, assault and battery on a disabled person and a child, and child endangerment," after she withheld chemotherapy drugs from her 9-year-old autistic son, Jeremy Fraser. This actually happened years ago, but was in the news again this week because of the sentencing. Jeremy was non-verbal and had lymphoma (blood cancer). He had been getting treatment at a local hospital, and his cancer was in remission. When he was moved home from the hospital, doctors gave his mother medication to give to him, and predicted that he would recover. But LaBrie did not administer the drugs, and Jeremy's cancer recurred, this time as leukemia. Jeremy died in March 2009. This week, LaBrie was sentenced to 8-10 years in jail, and 5 years on probation.

These are only the cases which have made it into the news this week. There are many more autistic people out there, right now, facing abuse and neglect in their homes, in their schools, in institutions. Their suffering is being permitted, hidden, or ignored.

Autism "experts" have already spoken up, defending the parents involved in these two cases. Neatha Lefevre, of the Autism Society of Washington, presented a stunningly sunny picture of the Oregon case. She told reporters: “The behaviors [of an autistic child] can be very challenging." Referring to Eckhart, who kept his sons in a dirty cage, she said, "When [parents] do this extreme, they feel this is the safest way to keep their children. The family will choose extremes because they don’t have good information.”

As for the Massachusetts case, apparently even the prosecutor "[expressed] sympathy for the challenges of caring for a sick, disabled child." TIME Magazine ran an article which began by asking readers to place themselves in Kristin LaBrie's shoes: "Imagine you are a single mother suffering from depression, overwhelmed with caring for an autistic, nonverbal and developmentally disabled son. If he were diagnosed with cancer, what would you do?" The article quotes a Boston-area attorney as saying:

"It can be so overwhelming for a single parent to deal with a child who is autistic, nonverbal, and developmentally delayed. It is cruel to add to that burden a diagnosis of cancer and a requirement that the mom administer medicine that will cause the child even more pain."

TIME also quotes medical ethicist Cynthia Rushton, whose take on a mother withholding life-saving drugs was: "I suspect this mother was really trying to do the best she could for him... what does it mean to be a good parent in this circumstance?" The article's author writes, "Was justice done? It's hard to know. Certainly, disabled children have rights. But moms do too, and it appears that LaBrie did not have adequate support."

As with most cases in which a parent abuses or murders a disabled child, there are a lot of voices urging us to feel empathy for the parent, to imagine how hard it is to have an autistic child. As far as I know, these "experts" have yet feel empathy for the child, to imagine how hard it is to be an autistic child with abusive or murderous parents.

Meanwhile, former PBS news anchor Robert MacNeil is returning to television with a special report called Autism Now. In a promotional interview, MacNeil described autism this way:

"It delays the most -- delays or impairs for life -- the most human thing we have, which is our ability to look into each others eyes and feel that other person's existence and what might be going on in their mind, and to empathize with them. That is denied -- largely denied -- to children with autism."

Rachel Cohen-Rottenberg addresses this claim with an open letter, posted here.

Every day, autistic people are being murdered and abused by people who are supposed to provide them with love and care. And every day, people tell each other that autistic people are the ones who lack empathy, never pointing out that often, it is neurotypical people who do not have empathy for us.

Let's take a moment to remember the connection between people who speak about us as though we are not human and people who treat us inhumanely.

Monday, April 4, 2011

Autism Awareness Month (Self-Advocacy Remix)

So, April is Autism Awareness Month. This is, unsurprisingly, a month dedicated to making neurotypical people (people who don't have autism or other brain disabilities) aware of autism. Like any other time when a lot of people are talking about autism, the opinions of actual autistic people often get ignored. So here are some things that I, as an autistic person, would like non-autistic people to be aware of during Autism Awareness Month.

1. Discussions about autism should prominently feature the thoughts and opinions of autistic people.
Just like discussions about women should center around women, and not, you know, their husbands, brothers, fathers, boyfriends, and any other men in their lives. If you can't understand why someone who has a particular disability (or any other kind of identity, for that matter) would know more about it than someone who doesn't, then I don't know what to tell you.

If you want to learn more about autism, watch "In My Language." Read "Don't Mourn For Us." Don’t trust people who don’t have the experience of being autistic to tell you all about us.

2. Yes, autistic people have feelings.
Again, I think this is pretty obvious, but a lot of people tend to think we don't feel emotion. So for the record: we have feelings. If we don't express those feelings the same way as other people, that does not mean they are not there. If we don't or can't communicate those feelings to you, that also does not mean they are not there.

3. Autistic people also have empathy.
A lot of people believe that autistic people do not experience empathy for others. In my opinion, this is due to a) prejudice and/or b) confusion about the psychological-technical definition vs. the commonly-used definition of empathy. We don't lack the ability to share other people's pain or happiness, which is how the word "empathy" is commonly used. What many of us do lack is the ability to tell what someone else is thinking or feeling without them telling us. I don't really think this is a big deal because it wouldn't even be a problem if people told other people what they were thinking or feeling instead of trying to make other people figure it out telepathically. This would make communication easier for everyone, including neurotypical folks.

4. Autism isn't [just] a social disability.
It has lots of other components, including cognitive differences, gross and fine motor problems, executive dysfunction, special interests and obsessions, and sensory issues. Focusing on the social problems that autistic people encounter leads to a very inaccurate understanding of autism. It also places too much blame on autistic people for the social ostracism we encounter, a lot of which comes from ableism. For more on the “social skills” issue and why it is messed up, read this.

5. The medical model is not a great way of thinking about autism.
Taking a medical-model approach means viewing autism as a disease in need of a “cure.” According to this view, a person has autism the same way they might have the flu – it’s an illness afflicting them, not an integral part of their personality. This is why people say things like “I want to bring my child out of autism” – because they genuinely believe that inside every autistic person is a normal person waiting to get out.

The reality is that autism doesn’t work that way. It’s built into our brains, and though each person’s brain grows and changes as they get older, we will always be autistic. This is who we are, and a lot of us are just fine with that. Therefore…

6. Having a passionate interest in making sure that no more autistic people exist is actually kind of offensive.
Seriously, think about this one. Think about an identity that you have, something important, something that makes you who you are. Now imagine how you would feel if there were lots of widely-respected groups devoted to making sure that no one who fit that description, no one like you, would ever be born again. This is one of the reasons that so many of us oppose research into the causes of autism: even though finding out more about the human brain is usually really awesome, in this case we fear any research into cause would just lead to a prenatal test for autism, and thence to ability-selective abortions.

7. Passing is not necessarily the best thing for autistic people to do.
A lot of early-intervention therapies for autism focus on getting rid of “weird” autistic behaviors and training children to act more normal. If these children then master the art of conformity and go on to become “indistinguishable” from their neurotypical peers, this is regarded as a great success. But few professionals consider the effect on autistic people of having to hide who we are and present ourselves in a way that feels inauthentic. In fact, though passing may open doors for us that would normally be closed, it often comes at a great psychological cost.

For the most part, people think nothing of asking autistic people to change everything about themselves in order to meet the demands of neurotypical society. But they rarely consider that it is also possible to change those societal demands in order to include autistic people.

I don’t quite understand the meaning of “awareness” in Autism Awareness Month. It’s incredibly rare to meet someone who is unaware of the existence of autism. However, I encounter myths and misinformation about autism wherever I go. I think this is as far as “awareness” can progress when the conversation surrounding a minority group is controlled by the majority. Of course neurotypical people can still contribute valuable insights related to autism – but only we can speak about it from experience. If your goal this April is to become truly aware of the realities of autism, you’re going to have to listen to what we have to say.

Sunday, April 3, 2011

April Snark

Julia’s facebook status: April is Autism Awareness Month. I am a person, not a puzzle. It’s not rocket science.

Me: Oh, that explains why I can't find a box cover with your assembly instructions on it. Silly me!

Julia: It's okay. We have poor visual search skills, remember.

Me: Oh, the epic snark makes April bearable.

Julia: I do not snark. I am not capable of wielding language that well. I don't even know what I am saying.

Me: Oh man, you're right! Actually, I'm not even aware of your existence as a distinct human being, right now. Or mine, for that matter. Gee, how am I typing this?

Julia: It's your facilitator, not you. Duh.


Me: by the way can I put our snarky status comments up on my blog?

Julia: …I was just about to ask you
If I could do that
(autistics don’t realize that we are individuals because we all actually think exactly the same thing!)