26 September 2012

So High-Functioning (sarcasm)

(Trigger warning: Ableist language and phrases.)

One of the most common responses I get when I disclose that I'm Autistic is the curious look mixed with a bit of confusion as the other person says, "But you must be really high-functioning then, right?" or something remarkably similar. And I get this.

I have "passing" privilege. Most times, most days, most places, I can "pass" pretty well for neurotypical, for non-disabled, for non-Autistic. (Except around other Autistics. They know. They always know.) Outwardly, I have all the markers of success (and more) according to the framework constructed and perpetuated by our ableist society—I skipped a grade, graduated from high school without staying an extra year, took honors and AP classes, was accepted to and enrolled in a prestigious university, and am pursuing a double-major while interning at a national non-profit organization. On paper, I look fantastic.

In person, at first glance, I seem completely together. I can be intelligent, witty, sarcastic, sociable—even gregarious. I've been in two romantic relationships, know at least the basic ins and outs of both domestic and international politics, and have memorized enough little facts and anecdotes from my life and the lives of other people I know to make dinner conversation for years. I'm told that the first impression most people get of me is "brilliant young woman" or something to that effect.

Most people equate "autistic" with unintelligent, incapable of doing anything, relegated to special education, unable to complete post-secondary education, anti-social, incapable of choosing to have or not have sexual or romantic relationships, and eternally infantile. These ideas arise because of the ableism that is so pervasive in our society. I defy most of them, if not all of them. Most Autistics I know do. Intelligence has nothing to do with disability, including in those with intellectual disabilities; ability to "do things" is very heavily tied to the presence or absence of necessary supports, natural or unusual; sociability or lack thereof has nothing to do with being Autistic; sexual orientation, including asexuality, is natural to everyone regardless of disability; and all disabled children become disabled adults. The only ones that may disproportionately apply to Autistics are the over-representation in segregated special education environments and the underrepresentation in higher education.

"But since those things don't even apply to you, and they must for all of those poor, low-functioning autistics, you must be very high-functioning. Right? I mean, I would have never guessed you had autism."

I'm sitting in my dorm room past midnight and I haven't started my homework yet. Really. I know exactly what my assignments are and when they're due, and I haven't started them yet. They're sitting behind me, papers and books jumbled together in my bag, along with dishes I haven't washed (and that have needed to be washed for several days now) and notes to myself to write articles and emails that I was supposed to write anywhere from a month ago to this past weekend. I know this.

This is a nightly routine. Know that I have homework; know that I need to do it; know that I have a million and one other things that must be done and maybe needed to be done sometime two days or two weeks ago; and sit here and do nothing.

I go on Facebook for a few minutes. Check a few links, an event page. Glance at my email inbox. Glance at my blog's list of articles I've written elsewhere or other places where people have linked to here. Put laundry in the washing machine. Eat a popsicle. Wait. It becomes two a.m. quickly. But that's early. I start my homework later. I frantically work at it, knowing that I have a ticking clock before I'll fall asleep out of exhaustion and knowing that no matter how hard I try to convince myself, there's no way whatsoever that I'll actually wake up in the morning before class to finish it.

Things that aren't homework? They rot for longer on my hard drive, on my to do list, somewhere in my mind and memory. I go to classes. I go to my job. I go to my internship. I go to events where they serve free dinner. I do my homework. But then I forget to call people and say hello. I forget to write random things about disability for this blog. I forget to email people to follow-up from meetings and conferences and chance encounters after promising I would and keeping a little stack of their business cards. I forget to do my dishes, days and days after I've used them and kept them in a pile of Dishes to Be Washed by the door. I stop noticing the gigantic paper with a to do list written in marker pinned to the door to see before I leave. And these things can happen to anyone, disabled or not, but for me, to professionals, they're evidence of "deficits in executive functioning," "deficits in self-care skills," "deficits in social awareness," et cetera, et cetera.

And they're not fun. Whether they're simply evidence that I forget things a lot or fall behind on things a lot or some massive amazing deficits somewhere (which I doubt), they make life obscenely harder than if I didn't do these things (and it's not as though I haven't tried every strategy in the book, so don't give me that "but you must not be trying hard enough" or "you should just try harder" crap) and certainly not even close to as shiny and easy and happy and rainbowy and sunshiny and yay as "you must be so high-functioning" makes my life sound.

And sometimes, rarely, but sometimes, I lose speech. The ability to form words and push them past my lips as sound disappears. Usually, no one notices, but that's because the few times that it's happened that I remember, it's happened when I'm alone. I've been around people exactly three times when it's happened. I usually speak. In fact, I usually speak articulately. I'm told this nearly every time I meet anyone or a group of people and spend more than one minute talking.

"But I thought people with autism couldn't talk."

Some Autistics talk a lot. Some don't talk at all. And others, like me, fall somewhere in between, whether you notice it or not. Usually, I talk. And occasionally, it just stops. And sometimes that's okay because if I'm alone, it doesn't really matter, and if I'm with another Autistic, they'll usually understand. But sometimes I worry that it'll happen when I'm in a situation where the people around me won't understand and won't just let me write or type things because all they'll see is that oh-so-high-functioning woman who we never would have guessed had autism so why the hell isn't she talking all of a sudden and what kind of ridiculous game is this. And that would be bad.

Because if nothing else, "high-functioning" usually means (grudging) (marginal) (barely any) respect for my human dignity and self worth. It means I'll at least get talked to, if talked down to, and I'll at least get listened to, if not taken seriously. It means I get into classes and show up at clubs and no one really questions my presence most of the time. And if nothing else, "passing" usually means presumption of competence, equal treatment under the law, no awkward or invasive questions from strangers, and legitimacy when I speak—until they find out I've just been passing, of course, and really aren't all that neurotypical at all.

When I speak in openly Autistic ways, move in openly Autistic ways, convey my thoughts and ideas and feelings in naturally Autistic ways; when I'm outed or out myself, when I lose (temporarily or permanently) the characteristics that let me pass or that get me labeled high-functioning; those are the times when I'm stuck between a rock and a hard place. (There—a metaphor. "But I thought people with autism have no imagination and don't understand metaphor." There's a good phrase for someone like that in Egyptian Arabic—ruuh fi siteyn alf dahiya.) Those are the times where I cease to be "that high-functioning person" or "wtf she's autistic" and simply become "wtf is wrong with her."

Some days I pass all day long, and consequently, no one questions my intelligence, abilities, competence, or qualifications. Other days, I'm stuck in a room full of hameer (donkeys) who've pinholed me onto the "high-functioning" end of the false dichotomy of "low/high functioning" because OHMYGOD I CAN SPEAK AND I GO TO COLLEGE I MUST BE SO HIGH FUNCTIONING. But I don't feel neurotypical, ever, and I don't feel "high-functioning." Some days I laugh hysterically at the idea that people actually believe this bull and think of me as "high-functioning" and Amy Sequenzia as "low-functioning." And other days I just want to cry because it hurts so much.

You don't really know what you're doing to me when you ask me if I'm just very high-functioning. You don't know what that does to entire communities of Autistics, all of whom suffer from these arbitrary, hurtful labels of low and high functioning, and none of whom they even come close to accurately describing. Because they only describe ideas that don't exist in reality, that don't exist outside laboratories without windows or thesis papers without people. They don't even describe precise or definite ideas. How can you take these words, then, and try to use them to describe real, breathing human beings? It reeks of ableism; it reeks of paternalism; it reeks of laziness and resorting to the language of convenience rather than searching for and using the language that affirms the value in being Autistic, empowers us despite our marginalization, and describes us respectfully and meaningfully.

"Oh, but you're so high-functioning. You must not really understand those less able than you, those who don't function at your level. You really shouldn't try to speak for them."

Ruuh fi siteyn alf dahiya, ya hameer.

You don't know me. You don't know the life that I live day in and day out. You see me for a few minutes, maybe a few hours. Maybe a few hours on a regular basis. You know nothing about my life except what I tell you in little increments, heavily edited increments. The things I choose to let you know. The things that aren't as consequential as the things that actually affect me. You don't know me, and you can't call me "high-functioning."

08 September 2012

What They Should Be Talking About

Today is Saturday, the eighth of September. I am standing near Farragut outside the National Geographic Museum while hundreds (possibly thousands, but probably only hundreds) of mostly non- Autistic people gather a fifteen minute walk away in Foggy Bottom for Autism Speaks's annual Autism Law Summit at George Washington Law School, which is not so coincidentally the home of an enormous Autism $peaks chapter (and unfortunately, the home of a few excellent disability studies theorists.) Welcome to the District. I hope you're enjoying the awful, awful gales and the absolute sheets of torrentially downpouring water. Oh, and the copious thunder and lightning too. I also hope you're enjoying the mosquitoes and terrible humidity. We did this just for you, to let you know just how welcome you are. (And there goes the booming crash and roll of thunder.)

Most of you, perhaps even all of you, will never read this blog post. That's okay. I don't expect you to. (Some of the staff at your national office, however, are another story. They don't like it much when people criticize you.) But I'm writing for the benefit of those well-meaning souls who'd like to know just what they can do to support the lives and needs of real Autistic people right now, but maybe have the wrong ideas about how exactly to do that. Some of you may be standing here in the storm, or trying to hide indoors from it. Or you might be sitting in front of your computer at home, breathing a sigh of relief that you're not here with me in D.C. (The weather truly is horrid.)

The Autism Law Summit happening right now is about insurance reform to "cover autism." Let me translate that. The Autism Law Summit happening right now is about how to lobby for legislation that will mandate insurance coverage of interventions like "ABA." ABA (applied behavior analysis) is the modern form of B. F. Skinner and Ivar Lovaas's theory of behaviorism as applied with vicious and efficient cruelty to the lives of thousands of Autistic children and youth across America. While the ethical, monitored use of it may be beneficial in the case of life-threatening behaviors, its uninhibited use and abuse is a great way to induce internalized ableism, self-hatred, and post-traumatic stress disorder. Many Autistic adults who were put through ABA as children now have PTSD. Those who weren't subjected to it seem less likely to have PTSD. Let me put it this way -- what the people at the Judge Rotenberg Center do? Yeah, that's ABA. An extreme and very patently obviously abusive form of it, but ABA nevertheless.

I would like all of you currently sitting at George Washington Law grateful to be indoors and out of the storm, know what I think the priorities in law as applied to Autistics should be.

Rather than focusing on laws that will reassure you that it is not merely legal but legally sanctioned to subject your children to therapies focused on normalization, making them indistinguishable from their peers, and suppressing natural ways of speaking and moving, you should be concerned about what is happening to them at school. You should be concerned about what unscrupulous advocates and judicial officials are urging you to do to your children when they leave high school. You should be concerned because Autistic children are disproportionately likely to be referred to the juvenile justice system for behavior and offenses that would not result in such referrals for typical children. You should be concerned because Autistic youth and adults are disproportionately likely to be determined unable to work, inappropriately reerred to sheltered workshops, and subjected to egregious abuses in the world of employment. You should be concerned because another state (Florida) was just added to the list of states in trouble for violating Olmstead.

The treatment that we receive as sanctioned by the law, under existing laws, and because there are few laws to protect our rights is a direct result of the narrow-minded focus on "what will help us make our children more normal." This provincial lens serves not merely to deny your children opportunities now, but to reinforce old prejudices and systems of belief that allow these legal institutions to be perpetuated. The law affects our lives, for better or worse, across the lifespan.

Less than half of all states have statutory limitations on the use of restraint and seclusion in schools, and only slightly more have strict regulations against their use. Only six states have statutorily mandated education about autism for police and first responders. Not one state keeps records on hate crimes committed against the disabled, and neither does the federal government. Several states still maintain institutions, and people like me remain confined there without access to, much less integration into, their own communities on the other side of the gates.

If you are going to talk about autism and the law, talk about what you can do in policy, regulations, and legislation to advance full inclusion in schools, provision of integrated and inclusive work opportunities doing meaningful work, prohibit adverse discrimination in healthcare and medical decisions, end segregation and institionalization in housing opportunities, promoting the education and empowerment of Autistic youth and adults to influence local, state, or national policy, and ending abuses and violations of our fundamental human rights everywhere. We don't need or want ways to make us more normal. We want our human and civil rights, and we want to be treated as fellow human beings and citizens under the law the same as everyone else.

We want laws that will prevent hospitals from denying us eligibility for transplants on the basis of false assumptions about our quality of life and how we live. We want laws that will prevent clinicians with PhDs from electric shocking us like lab experiments for looking at them the wrong way. We want laws that will ensure that when people kill us, they go to prison just as they would if the victim had been nondisabled. We want laws that will ensure our just and equitable treatment in the criminal justice system. We want laws that will challenge and end all segregation and institutionalization.

These are the laws that are important to us. Why aren't we there, at this "Autism Law Summit?" Why aren't these issues being discussed? Because in the end, this summit happening not too far from where I sit isn't about us, after all. It's about pandering to ableist notions of what should be done to Autistic children in the name of normalization, and it's about being able to claim that they're doing something important and meaningful while ignoring the real issues. While ignoring our murders, both active and passive, and while ignoring a long train of abuses perpetrated against us because the law either permits it or looks the other way. And because of that, thank you, but I'm content to stay in Farragut this afternoon. Enjoy the storm.