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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.