Content: Mentions of violence against people on the basis of ability, race, and so on; Mention of abuse.
Friday, March 1, is the 2013 Day of mourning for those PwD whose lives were lost to the hands of their caregivers. Last year, it was at the end of March, not the beginning, which means it’s not quite the anniversary of knowing one of my abusers/caregivers is dead. Last year, those two things fell on the same day. I felt shock and relief mixed into my grief. The shock predominated throughout most of that afternoon.
It’s been a year and a month since Stephon Watts was killed, by police who his family was told to contact for “help,” for the combination of being an Autistic young black male. 11 months since Daniel Corby’s murder. This fall it will have been 20 years since Tracy Latimer’s murder. A month and a half since Robert Saylor’s murder. Almost 80 years since the Nazi’s T4 program. I can post lists and timescales forever, it seems, and it still won’t have all the names it should.
Our dead are mixed in with the dead of others in places where our identities cross, these cross sections boosting statistical probabilities. Stephon’s murder was just as much (if not more so) a factor of racism as disability. T4 blended in to a larger propagandistic and genocidal engine.
There are sadly always many for which to mourn.
This year, we’ve seen violent events, events which have gotten the attention of major news outlets and the dwellings on of news cycles. In these ways, it is unlike our dead- though our dead are hidden in theirs. Instead of joining in mourning, the public uses these deaths as a means to fuel the same bigotries which lay behind the excusing of our deaths and pardoning of our murderers.
Recently, some noticed something terrible, something demonstrating the way in which a certain segment of the disabled population is viewed, when they googled “Autistics should” and “Autistics are.” Google uses everyone’s searches to guess what your next words will be. Based on the searches in their database, google suggested things like “Die” and “dangerous” to complete the search.
A flashblog (see both “should” and “are“) appears to be bearing some results* in amending the computer side of this, but Google only has the ability to amend what their searches suggest. They can’t amend a code and instantly remove the biases that lead to those searches in the first place. (Though it does help.) Erasing bias a is longer, and more complicated, process than that. A process which is on all of us to work on.
A process that we all need to keep in mind. Bigotry that cannot be forgotten, as it blooms fresh again.
My words here are not as direct as I’d like. I see that my sentences are convoluted, but every time I fixate on them enough to begin translating them out from the word pictures in my head into plain language I feel those things that indicate I’m about to cry. It’s hard not to, when you allow yourself to really have the reality sink in. Terror, relief, grief, anger, sadness, and the sense of ever reaching, all inter-playing and weaving.
Yes, I do believe I’m mourning.
This year’s vigils are being jointly backed by ASAN, Not Dead Yet, and the National Council on Independent Living. You can find the nearest vigil to you on the ASAN website, and I’m (as an ASAN person) managing the virtual vigil 3:30pm EST-Midnight-ish, with a good friend, That Crazy Crippled Chick, as my second.** This is a cross disability effort; Autistics are not the only PwD to be murdered by those who were supposed to protect us.
* The article in the link is titled in a way that suggests that this change is already in effect. This is inaccurate; as of this writing, Google has agreed to modify their algorithms to eliminate this issue. It has not been implemented in a way that impacts the user end experience as of yet.
** Or number one, if I’m Picard and she’s my Riker.
I didn’t think I’d have something to say today. I haven’t been able to organize my thoughts in the way I need to to write here, and I have a list of things I need to get done that. . . well, it just hasn’t thus far. I thought that I wouldn’t have something to say for Blogging Against Disableism Day, or at least not something that was worth posting here.
I was wrong.
I just finished reading Amanda B’s first post for this year’s BADD (she wrote two) and . . . Well, I found myself upset. And not just because her posts are on distressing issues around abuse by caregivers, but because I had just recently been trying to articulate some of the things she wrote about being conditioned to believe our support needs are unreasonable. Amanda was talking specifically about issues with staff and care givers being abusive, and about the cultures that support that within provider systems. But the conditioning is something I’ve been working on fighting out of my own head, and I’m someone who isn’t getting adequate supports or services. (I have less extensive support needs staff care wise and equipment wise as my health and skills are very different from Amanda’s, but that doesn’t mean I don’t need supports.)
I’ve been depressed lately because of how long it has been taking for me to get housing, and because the type of support that I need to navigate that type of system it is more complicated. As a result, my family has been truly over taxed in trying to make sure I’m not living under a bridge or someplace where predatory individuals would have access to me. My family members have disabilities of their own to provide self care for, as well as not really having the financial resources to support me in a way that respects their own needs. It’s not that I have super intensive care needs in general- once I have a place and can set up my charts and other adaptive methods, I might need a couple hours a week to help coordinate bills, cleaning schedules, and transportation. But they are still needs that are amplified by not having a permanent home that I can set up as an environment that is suited to developing or maintaining my Daily Living Skills.
However, I also know that I cannot cope at all when I don’t have some obligations or responsibilities to meet. Accessible, meaningful involvement. Unfortunately, none of the things that are immediate to my situation are things I have the skills to navigate. Instead, online things and meetings and disability justice work are the things that allow me to cope, to endure not knowing for sure where I’m going to be sleeping next week.
But my needs for this sort of meaningful activity, and the relatively easier and less expensive to provide supports I need to do them, are characterized over and over as unreasonable. Unreasonable in light of how I haven’t been able to get housing. Unreasonable in light of needing someone to work one-on-one uestion by question with me to fill out assistance forms, or even in writing an advanced directive when I know basically what I want.* Unreasonable because I need some help in managing my money, because when I try I end up just not buying the things that I need and doing without until it hits crisis even when there’s money for something.
*That set of needs in and of itself is called unreasonable in light of how “smart” I am, how I can be involved in national level policy review, how I scored so high at English in high school. That I can write and review policy somehow means I must be able to apply each step to my own life accurately, without assistance. That there’s a different set of neurological skills between writing big things or reviewing big things and applying those to a very specific case in a way that uses standards measured from the outside is not fathomable.
This past weekend, it didn’t work out that I could go to a family member’s. So I went to the cheapest hotel in my county with wifi, and checked in. (I even agreed to watch my niece on Friday night, as she and I get on well and my sister needed the support that having someone else handling her would accomplish. The sort of support that if the dad had been willing to provide when it is needed two nights or so a week, wouldn’t be a problem.) But when the hotel’s internet was not operating appropriately, all the things that I’ve been told- the things I’ve listed in a heavily limited way above- came into my head.
That daring to have obligations to fufill was an unreasonable thing for me to have done, even though they are obligations that aren’t terribly extensive. That needing reliable internet access because I had been asked to complete one thing was something that somehow made me an extra burden above and beyond. That contributing at all can’t happen somehow when you can’t hold a job that supports yourself. That while my disabilities do not make me something aweful, that my daring to participate in the ways that are accessible to me somehow does.
I know that it is all programming, that it is the sort of behavioral training in action that Amanda is talking about when she says that you don’t need locks or restraints to practice seclusion and restraint on someone. I am someone who has picked apart the details of how society trains us into compliance for the ease of others. How being a part of a marginalized group means that we have epic fights against the things inside our heads in order to survive. I’m someone who films myself daring to reject indistinguishability, who knows that we make tiny revolutions by demanding that our determinations of what we need are listened to. Someone who lives and metaphorically breathes disability rights.
And I’m still digging out the conditioning in my own brain that reduces me to a something, to a burden and an unreasonable. My mother is still unraveling the complexity of what access is vs “enabling” (which is a complex mess to dig around in itself). My sister is still without her GED because when she has to directly interact with her acquired learning disabilities, the things she’s internalized over the years both when she was a norm with a disabled sister and after she acquired disabilities collapse her incredible demonstrations of self confidence.
When we talk about the impact of disableism, we are talking about trauma, a trauma that can be obvious enough to shriek or subtle enough to make being explicitly told that others will help us access our world a shock, a pleasant surprise. We are talking about outposts in our heads, and the outposts in other people’s heads.
We are talking about how some nights I lay awake worried about the day when my niece no longer thinks I’m awesome, no longer misses her buddy Skylar, no longer meets a family friend’s kid at his level of interaction because it seems horribly inevitable that she’ll learn the memes of disableism in our culture. Because even with some of the amazing bits of joy and hope that people share- Dave talking about Ruby’s dance class, Brenda talking about her love for her son as a whole person- it’s hard to believe that the hope that it gives will turn out.
It is so hard to believe something that amazing can last when you live in a world where it’s socially acceptable to exercise disableism, to raise children with disabilities around language about brokenness and tragedy into adults whose hearts break daily because it’s hard to unlearn that stuff.
But somehow, it is still something worth writing, and fighting, for.
(A different, positive, musical Something to play you out.)