113. What Lies In Us

Warning: This blog post is potentially triggering because it talks about the history of euthanizing the developmentally disabled. It is an upsetting topic to many of us, so please do not read any further if you cannot engage with it.

“What Lies In Us”

I have been intermittently dipping into “NeuroTribes” by Steve Silberman. It’s an engaging read, not without its detractors amongst autism self advocates. But for an overview of the trajectory of how we have arrived at where we are (or aren’t) in our (non-autistic) understanding of autism, it’s pretty thorough. Here we are talking mostly about the western world, and what has been tried by western thought and practices. There has been scientific rigor and reasonably good documentation of efforts, but also a level of clinical detachment that feels chilling to my South Asian way of processing. I cannot imagine that life was or is so much better for autistic people in the part of the world from which I originated, but I look forward to reading more on the subject.

As I have been delving in, there have been sections that made me feel sick enough to shelve the book for longish periods of time. As an autism mother, it is not possible for me to take that detached stance necessary to read without pause. The first time it happened was the section that covered the era just before, and during, World War Two.

The horrible eugenics movement, which was America’s dubious gift to Europe at that time (one can see that it never stopped giving, and lives on in racist, anti-poor, anti-immigration, and anti-disability policies that rear their disgusting heads on both sides of the Atlantic even now), had a direct impact on how autistic people came to be perceived and treated. They were described as “mere creatures of the moment…slaves to temptation…useless eaters…human ballast” (Silberman 113, 116), deserving of sterilization so as to “dam the flood of degeneracy” (114).

The idea of reducing society’s burden was rapidly gaining currency, and this inspired Ewald Meltzer, director of the Katharinenhof State Home for Non-Educable Feebleminded Children in Saxony (WTF. I would love to go back in time and slap the shite out of whoever came up with that name) to write to the male guardians of his charges, gently probing them on the issue of whether they were interested in euthanizing their children (115).

His survey questions clearly struck a chord with recipients because he received a great many replies, basically telling him that they would have preferred that euthanasia had been carried out without consent so as to alleviate parental guilt.

The book goes on to describe how arbitrary the selection methods were as to which children had to be eliminated, and it documents the various methods used to murder the developmentally disabled. As wishes became hardened into policy, even parents who wanted their children to live were denied the right to advocate for them. I have no desire to upset anyone further, given how much I wept as I engaged with the content myself, so I shan’t elaborate. If you want to stare into the sinister face of what evil has been done to our autistic children’s predecessors, you can read Silberman’s book yourself.

In a tragically ironic twist of fate, it was Allied bombs that destroyed the care facility run by Hans Asperger, killing the very children he had managed to save from Hitler’s policies. Asperger himself advocated subtly for saving the lives of autistic people, but he was forced to do so in a way that became problematic, and continues to be so today—by advancing the idea that autists are inherently gifted, preciously detail oriented, and can blossom into the scientists, mathematicians, and artists who are unfettered by neurotypical limitations and inhibitions. He did what he had to do at the time, but it left a marked legacy—autistic people unable to prove themselves as savants end up being seen as incapable of any worthy achievements beyond vocational training to, say, assemble pizza boxes; parents of deeply average autistic kids get blamed for not putting more into finding the savant in their kids; and disability funding continues to be in peril.

And let’s be very clear: it did not take extraordinary evil to perpetrate what went down in the Nazi era. It took regular people deciding that enough had been ‘lavished’ on the ‘unworthy.’ It took desperate parents staring at the future when no one was going to care about their kids in any meaningful way. And it took a simple mental shift—that it is the responsible thing to do to decide the destinies of the autistic among us. Segregation, differential treatment, euthanasia—these are slippery slope ways of thinking.

These ways of thinking are not gone. They did not die with Hitler. They did not perish from the shame of the testimony at the Nuremberg trials. And they are not the sole province of hardline policy makers. Nor are they hiding, like Voldemort, waiting for their moment.

Where are they?

They are on the school playgrounds and cafeterias, where kids like mine learn to be grateful for days when no one notices them because the alternative is worse. But kids are just being kids, so these spaces belong to the powerful.

They are in special ed meetings, where too many parents don’t know what they don’t know to ask for, and are stared at dispassionately by professionals who are not allowed to tell them the jargon that will help them.

They are in refusals to include our children in meaningful after school activities, and no one notices that our children are not there.

They are in English class interpretations of “Of Mice and Men,” when the idea of euthanizing Lennie is taught as the only compassionate option available at that time, whereas “now is better.”

They are in the passing conversations between townspeople who complain that too much is spent on special ed and not enough on gifted programs, or football.

They are in the unflagging efforts to dismantle the Americans with Disabilities Act, and the disrespectful arrests of disability advocates.

They are in the lip service paid to inclusion, i.e. charity without continued engagement.

They are in the horrifyingly innocent remarks made to parents like us. “Wasn’t there an in utero test that could have predicted your child’s affliction?”

They are in the opinions that race and caste mixing produces half wits and mutants.

They are in the people who tell us to stay home.

They are in the people who tell autism families to leave the neighborhood.

They are in the fearful vigilantes who call the cops.

They are in the judges who sentence autistic people to prison.

They are in the people who abuse and exploit autistic people.

Just as they are in the people who shrink away from fear, or turn their faces away.

No. They are not gone. And they do not come from simplistic notions of evil. They come from normal people looking out for themselves and their own.

Let us never imagine that we are somehow better than our predecessors. We are exactly the same. And we cannot keep genuflecting at the twin altars of self congratulation and deflection, without the gravest consequence.

Radha.

Source:

Silberman, Steve. NeuroTribes. New York: Penguin Random House, 2015.

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