The Horror in the Asylum Walls

There’s a lot of really good critiques of the asylum horror trope. They are very legitimate, especially within the context of the typical mind and the societal approach to the “mad and mentally infirm.”  The general consensus seems to be that they rely on the idea that the horror stems from being “in there with THEM,” where “them” is the disabled other.

For me, I’m drawn to them and feel the horror in them for a different reason. For me it’s nothing about being in there with a disabled them. I already AM the disabled them, the one that was called dangerous and segregated out. I kicked, screamed, and clawed my way out of that segregation, but I’ve carried that along on my back since childhood. They are not an other to me- they are family, and not the kind that holds you down for your own good.

For me, the horror and the fixation, the draw, comes instead from the individual realizing the truth of what we do to people like me.  Our protagonists are being subject to these things, things that are really things that I can be afraid of or have faced. It is a real horror, and one that permeates my fears already. It is terrifying to have your life and freedom held, controlled, by people who refuse to see you as a full human. It is terrifying to have people give you medications you don’t understand “or else.” It is terrifying to try to escape those making you feel unsafe only to have it end in restraint. It is terrifying to have people act as though the terror your experiences have told you is warranted is “just” in your head. It is terrifying to go to demand your rights and have the doctor add it as a symptom in your chart rather than a violation.

Witnessing that, to me, is terrifying, similar to watching a dramatization of a real serial killer case. It is a real thing that really could have happened to me. I could have been locked away- my mother was certainly told to do so enough times. I could have had to fight for years instead of weeks or months. It’s a gut deep fear.

My mother didn’t lock me up. She fought hard to keep me in the community. But that doesn’t mean that the fear doesn’t lurk in my nightmares. You have that hanging over you for years and that fear nests there.

I do a lot of peer education work around self advocacy skill building, including sharing with people living in thestate institutions in my state. One time I was visiting one of them in order to present. The institution had a cottage on campus that was set aside for families from a distance away visiting their kid or other relative. (The building for families? Not wheelchair accessible. I guess they just never expected a family member to be using a wheelchair to just visit.) The institution offered it to use, to cut costs of hotels for our group. We got into the rooms and I melted down. As much as I knew that I wasn’t there to be locked up, the lurking terror from my childhood came to me and wouldn’t go away. I had no way to sooth them there. The room was hot enough to disturb my sensory stuff and didn’t allow for the room to be chilled to calm me. The blankets were wrong. The room itself had that old school nursing home feel. And no, there wasn’t any internet to drown it all out, either.

Eventually the project staff had to last minute order a hotel room and drive me to it off campus after her normal bed time. She was fine doing so, and we never agreed to stay there again. I still day trip to the institutions for peer education, and I’m fine doing those so long as we are off the campus by dark. It’s similar with other institutional settings- nursing homes, mental health facilities, even transitional housing. When I was homeless, I spent one night in transitional housing and hit the point where I would have rather lived under a bridge. I ran away and a friend of mine (actually the same project staff) came and had me stay at her home. (The fact that the nursing staff there thought Passover observations were a sign of a latent eating disorder didn’t help.)

So when a horror movie lays bare the reality of institutions and being disabled in those environments, I both shiver at the treatment and thrill that the polite skirting that normally hides what could be my reality is lifted. My favorites, of course, are when the current or ghostly patients are the key to the protagonist’s escape- when trusting a “fellow” inmate is the way out of the man made hell.

And it is man made, even when the protagonist is encountering the supernatural. Frequently it is not the existence of the “mad” alone is not enough to fully fulfill this sort of story. It is the suffering they were inflicted with in the asylum. Similar to the typical haunted house story, where domestic violence and murder-suicide are the frequent suffering to create ghosts, the narrative of the haunted asylum allows us to reveal and name rightly the horror of abuse within societal structures. It becomes satisfying to the viewer, then, when the evil doctor is killed, or conquered, over the course of the narrative, just as the exorcism of the abuser-spirit delivers relief in the haunted house narrative.

I understand that this is not how most people, disability activists to utterly abled and NT, experience these narratives. I accept that, I don’t mean any of this to dispute those experiences or the legitimacy that the typical disability critique has. I even accept that we NEED those critiques, desperately, as the normative readings of these works does not match my own and can create harm unchecked. But I have had this experience of these texts- an experience that posits how we treat people with certain disabilities is the horror, not the PwD themselves- and it has troubled me for a long time that I haven’t heard many others that take this approach. Perhaps it is because of “Autistic Perspective Taking” reasons, especially in how long it took me to accept that the other view is more common, but I have to state the existence of my experience in this genre.

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Why I Reject Autism Speaks

A couple of months ago, my brother sent me a text. Did I  want to go to the Autism walk with him and Em?

I did a quick google and found, as I had suspected, that the benefactor was Autism Speaks, and I responded in the negative. I also did my quick bullet points of reasons not to support them- not even the in depth version, just the elevator speech version. I also did another focusing on their media presence. Here’s a transcript:

Me: They promote a tragedy model of autism and act like the desire to murder your kid is understandable to have? Also they refuse to have any autistic people at all on their board and the one guy who was on their advisory quit because they didn’t listen to anything he told them. Only 4% of their budget goes to families. Most of the money doesn’t make it back to the communities it comes out of. Instead it goes to their media machine.

Wil: I see that’s lame as hell we were going to go but not anymore that’s way messed up.

Me: Next [time] you are on YouTube google Autism Every Day to see a mom talk about wanting [to] drive herself and her kid off a bridge IN FRONT OF SAID KID and not doing so because of her non-autistic child. Or the I Am Autism one where they took film from families not telling them that the voice over would be about autism destroying families. ❤ [heart emoji] Thanks for listening!

Wil: Yeah I’ll check ’em out thanks for the info. We were gonna take her parent’s car and go ‘n bring you along but after hearing all that we were both like nooooope.

This was one of the LEAST difficult attempts at educating people, and I didn’t even have to drop in too much detail.

I didn’t have to talk about their allowing the JRC to advertise at their events. The JRC uses painful skin shocks on students with disabilities. It deprives children of food as punishment for even small behaviors. It has been called a human rights violation by the UN’s torture investigator.

As for the guy who left their advisory: He posted an open letter when he left.  (He might still retain hope that they could reform, but I don’t.) It was the science advisory, by the way- not the board. I have seen some people thinking that it was the board, but it wasn’t- there’s never been an autistic on their actual board.

While I mentioned that only 4% (really less than) of their budget goes to helping autistics and our families, I didn’t go into details about how they spend more on catering. I didn’t note that “fundraising” makes up 25% of their budget, and Advertising and similar “awareness” another 30%.

I didn’t note that the research they fund goes towards eliminating people like me. I didn’t mention the prenatal testing research that they’ve supported, or how if they find a successful test it will eliminate people like me before we are born. (Similar tests for people with Down Syndrome? 9/10 times, the parents become convinced to abort the fetus, often due to misinformation about Down Syndrome.) I didn’t mention that their research projects don’t take privacy of autistics seriously. It doesn’t take the idea of autistics giving informed consent seriously either. Only between 1-2% of their research funding goes towards quality of life related research that would help autistics today.

I have a strong belief of “Nothing about us, without us.” And that alone would be enough for me to reject Autism Speaks. But the way that they treat us, the way that they treat hating us, pitying us, and getting rid of us? The way that they manipulate our families? That really does seal my rejection of them.


 

Please check out the #BoycottAutismSpeaks flashblog for other people’s reasons to oppose Autism Speaks.

Here’s the most recent letter from ASAN to Autism Speak’s Sponsors about why they should drop their support.

Here’s GoldenHeartedRose’s Master Post about Autism Speaks.

Here’s the stuff AutisticHoya has written about Autism Speaks.

Here’s my older post about rejecting Autism Speaks, “Why I’m Not Blue.