Autistic Acceptance Month Day 19: I Hate It When Power Begets Corruption [A Rant]

“When your dreams all fail / and the ones we hail / are the worse of all / and the blood’s run stale.” — “Demons” by Imagine Dragons

I hate it when I tweet and tag the largest autism organization in the world to ask them to use their immense platform to help the #StopTheShock movement and to urge the commissioner of the FDA to issue a ban on GED devices…and that large organization not only completely ignores me (which I could forgive — they’re busy and I’m nobody) but continues to say not a single word about the abuse issued by Judge Rotenberg Center or how that abuse needs to stop.

I hate that the Judge Rotenberg Center hasn’t been shut down or made to discontinue those shocks when this was first brought to the FDA’s attention years ago.

I hate that those who suggest that the Judge Rotenberg Center is paying off the FDA and possibly Autism Speaks to remain silent on the issue are probably right. I hate that people’s well-being and safety are put secondary to a dollar sign.

I hate that marijuana is still criminalized in the United States for that same reason.

I hate that a neurodivergent-ran press that I follow (and have talked positively about on this blog) and other autistic advocates are in a war of accusations at the moment. I hate that said press deleted comments by one of those advocates asking for clarification.  I hate that there’s a possibility that this press that I admire is bullying and excluding others in the autistic community, that my supporting this press in the future might mean supporting these bullies, and I hate that I don’t really know what’s going or how much credence the accusation that this person is himself a bully and that their “excluding” him is a way to preserve professionalism and reduce drama holds. I hate that there are people that I look up to on both sides of this and that, no matter what the truth actually is, someone I look up to is being treated unfairly. I hate that my specific autistic nature compels me to “pick a side”, to declare one side “in the right” and the other “in the wrong”, and I hate that my specific autistic nature makes me very bad at picking sides and compels me to give all sides to an argument equal weight.

[UPDATE: I understand the above situation a little bit better now:

Autpress released this post in which they revealed a bit about their process of deciding who and who not to publish:

We have a board policy of evaluating the “fit” of potential authors with the press’s mission, vision, and values. Sometimes, this means we decide an author is not the right fit for us. When this happens, we have a board policy of turning down work from potential authors whom we expect, based on either their previous body of work or their previous public conduct, to be a detriment to the press’s mission, vision, or values in some way.

These guidelines make perfect sense to me: every company wants their products (in this case, the works being published) to reflect their core values. Whatever those values are (which seem to be of neurodiveristy and of strong anti-pathologism of autism, along with gender and racial equality and celebration), Autpress feels that the individuals in question (the individuals who have made claim of being blacklisted/excluded) did not or has had work that did not align with those values.

That’s cool. Not everyone will be a fit for every publisher, and that’s okay.

I still don’t know what to make of the accusations of bullying on either side.]

 

I hate that Temple Grandin has spoken of so-called “low-functioning” autistic in a way that dehumanizes them. I hate that she accused those who are unable to find work of being “lazy“. I hate that she is speaking at a Talking About Curing Autism conference. I also hate that some people want to oust her from the autistic community for this, that membership in this community is considered (by some) to be conditional on holding certain viewpoints (just because I hate a lot of what Dr. Grandin has advocated lately doesn’t mean that I want to excommunicate her).

I hate it when people and groups that I admired turn out to be deeply problematic.

I hate that there are there are way more ABA / behaviorist centers in my area (one would be within walking distance of my house were it not for dangerous highways) than there are social groups for autistic adults or counselors who specialize in autistic adults (there are a few groups like The Arc or Families Helping Families, but I’m not sure that there’s even one of the latter; there is a child and adolescent psychologist who specializes in autism, but it’s hard to find one for adults). I don’t think that ABA is *always* bad–there are some useful skills learned in some ABA settings–but I hate that many of these ABA centers want to de-autism autistic children (a.k.a force them to act “normal”), and I hate that the needs and concerns of parents are given more attention than the needs and concerns of autistic people themselves.

I hate that so many people are against finding out what causes autism. I hate that there are some that would want to use this knowledge to then eliminate autism or to screen fetuses for autism and then allow for their abortion, but I love science (especially genetics) and love knowing things, and I hate that the history of eugenics against autistics has clouded attitudes towards learning more about what makes us, us. I want to know why I’m autistic for the same reason I want to know why I’m short or have brown eyes or can digest lactose — it’s just cool info!

I hate that parents are still killing their autistic children, though I do like that there appears to be less sympathy for the murders or “It’s so hard to raise an autistic child!” this time around (less, but sadly not the absence of). I do hate that there is sometimes a genuine scarcity of resources, but I hate immensely that parents don’t put the child up for adoption or leave them with a relative instead of resorting to this.

I hate writing wholely negative posts, so here’s a reminder that YOU, dear reader, can help bring this story to a positive note and make things better for autistic and other disabled people if you:

• Call the office of FDA Commissioner Scott Gottlieb at (301) 796-5000, and ask the FDA to release the regulation. We’re [the Autistic Self Advocacy Network] organizing two call-in days when the disability community can speak out together. Just like in the past, we’ll also be sharing tips, scripts, and other ways to act if your disability makes calling difficult. The first call-in is Friday, April 13th, and a second will be happening on April 24th. You can use this script:

  My name is [NAME] and I am from [City, State]. I’m calling on Commissioner Gottlieb to ban the GED shock devices used at the Judge Rotenberg Center. The FDA has had a final rule to ban these devices ready since 2016, but the Commissioner still hasn’t released it. Every day, disabled people are being tortured with these devices. Commissioner Gottlieb needs to immediately release the rule banning the GED. We’ve waited long enough.

  Email Commissioner Gottlieb at CommissionerFDA@fda.hhs.gov, and CC: the FDA at DICE@FDA.hhs.gov. Use the subject line  Judge Rotenberg Center

   You can use the same script you did while calling.

  Sign the petition to have the FDA release a regulation against the use of GED.

  Spread the word on social media using the hashtag #StopTheShock.