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How Neurotribes made the Holocaust personal for me

14 Nov

I firmly believe that all people are my people. That I have to accept that my people were both the victims and the villains of history. I weep for my people who have suffered, and I feel shame for the actions of those who perpetrated those crimes.

I firmly believe this. Now, it’s one thing to say, “the people who suffered in the Holocaust were my people” and to feel that very real pain. But, as I found out, there is a whole different level when it really becomes personal.

And that’s what happened when I read Steve Silberman’s Neurotribes. Actually, it happened when I Steve was writing the book and shared some of his research with me.

You see, I am not Jewish. I am not Roma. I am not gay. My disability is not major. In short, I am not any of these or the other peoples targeted by the Holocaust.

I am, however, the father of a child who would never have made it through the Holocaust. And it never really struck home until Neurotribes.

Steve lays out in his book how the framework for the Holocaust was built starting with one person. A disable child. A disabled child in a time when the culture (and not just in Germany) made having a disabled child a shame for a family. A burden. Someone to be rid of.

Generally, being “rid of” meant institutionalization, although there appears to have been an unofficial euthenasia program going on in maternity wards. In 1939, one set of parents took the next step: they asked their doctor to “put to sleep” their disabled child. Years before a researcher had surveyed parents of disabled children and found that many would approve of their child’s death, but didn’t want to officially know. This step was something different. His own parents asked for his death. There was no law that would allow that, but in approving this child’s death, the legal framework was created that would grow into the murder of millions of people.

Let me pause for a moment here. I can’t read that, hear that, think about that and not see my kid’s face. Not see the look of absolute trust, of love, that I see in that face every day.

And think of betrayal. And think of the face of kids as they were taken from their families. The faces of kids as they landed in horrible places before their deaths. Faces like my own child’s face.

It’s horrible, absolutely horrible, to think about the atrocities of the Holocaust. Those who died have been and always will be my people. But, yes, this makes it more personal. Much more painful to me. I wish I were a better person and didn’t need that personal connection to feel this pain.

Steve called me at one point when he was writing his book. He read me some of the material he had found, about how children like mine were so disregarded that their own parents gave them over for death.

I went silent for a long time. Not because I was being solemn, but I literally could not speak. My child’s face. That’s all I could think of. Love. Trust. And, yes, betrayal. A look I can, thankfully, only imagine.

We will never let this happen again. Of course I believe in that. Strongly. And I weep for the fact that, yes, genocide has happened in my lifetime and, yes, my America has not acted vigorously. I have not acted vigorously. But with the story of Gerhard Kretschmar, my connection goes beyond belief. It now goes to my heart and soul. Again, I wish I were a better person and it didn’t take his story to drive this home so deeply.

by Matt Carey

Thank you to Lorna Wing, Ruth Christ Sullivan and so many more

4 Nov

Last weekend I was having lunch with my kid. Yes, we interact a great deal in these lunches but, yes, I also take some time to read. I was re-reading Steve Silberman’s book Neurotribes. There is a great deal of discussion in Neurotribes of people who changed how we understand what autism is, as well as how we (we =autistics and non autistics) relate to autistic people. Much of this comes out in one of the last chapters, where the discussion of how the film Rain Man came to be produced. Two of the many names that came up were Lorna Wing and Ruth Christ Sullivan. Both were parents of children with very high support needs. Especially in their time, the people involved in shaping the understanding of autism and autistics were largely parents.

Both Wing and Sullivan had children with high support needs. And, yet, Wing was instrumental in bringing about the understanding that autism is not just about people who were like her child. Wing brought the work of Hans Asperger from out of obscurity. None of this “not like my child” stuff. Sullivan helped found the National Society for Autistic Children (what we know today as the Autism Society of America). She was lobbied to get special education passed in the U.S..

And as I read about them, again, I was struck with, “I never wanted to be a part of advocacy. I just want to live my life with my family.” I want to quietly eat lunch with my kid and read books, and probably not autism related books.

It wasn’t until later that a few things dawned on me.

I was sitting in a restaurant, having lunch with my kid. A kid who is very, very clearly autistic. And who was being very, very obviously autistic. Something Lorna Wing and Ruth Christ Sullivan almost certainly couldn’t do. And something that is only possible now because people like them (as well as many others, including autistics) accomplished in acceptance.

Seriously, in their day I would have been asked to take my “retard” kid out of the restaurant and not come back.

I am able to sit in a restaurant because my kid attends an excellent school. I won’t go into details, but, yeah, good school = better life for all of us. And without special education laws that wouldn’t happen. And without the understanding of how to support autistics, brought about by so many that came before me, a good school wouldn’t even exist, law or no law. That school and our opportunity to send our kid there exists because of the hard work of so many people who came before me.

I’m no Lorna Wing. I’m no Ruth Christ Sullivan. I’m not one of the many autistics who have helped change the world–autistics who are “not like my kid” but who have, nonetheless, helped get my kid and me into a world where we can sit on a quiet Saturday afternoon and eat noodles. One of us being clearly autistic, and the other reading a book. And most of all, both of us welcomed.

So I’ll try to keep doing what I can to help keep progress happening.

by Matt Carey