I Do Believe This Is…

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.

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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.

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A Quick Note On: Disability vs Impairment

In the past couple of months, I’ve spent a lot of time reviewing curriculum and reading some research papers/essays that some people trying to be decent allies have done.  A lot of them do an okay job on some things, and a less great job on others. But the most common issue seems to be conflating “disability” and “impairment” in a way that reflects a relatively un-nuanced understanding of the larger disability rights movement.

The most basic definition of the Social Model is along the lines of a person is disabled not by their impairment, but by their environment. Sadly, many people fail to look at this and see more than “society alone is to blame for disability.” I see people who say that social model isn’t realistic, based on this misconception, for individuals with extensive support needs.

This fails to take into account the possible corollary that within an appropriate context, a person’s impairment would be irrelevant to their abilities. Here’s an illustration of that, and a very standard one:

Imagine a wheelchair user named Mary. Mary’s condition includes impairments in being able to support herself due to muscle weakness, so she needs to use a chair to get around. Mary goes into a general world, and there she finds that people who she shares interests with meet in a space that is up stairs without an elevator, and that the coffee shop that said it was accessible actually has a stoop too high to wheel over. But if Mary goes into Accessible Town, elevators are in the buildings and the buildings were built/modded in a way that doesn’t involve stoops, and where the halls and doors are wide enough for her electric chair.

Mary didn’t magically stop having her impairment. Instead, her environment no longer interfered with her ability to participate fully in the community of Accessible Town. Unfortunately, people look at the stories of hypothetical people like Mary and go on to claim that that is all well and good for people with physical impairments, but that those with intellectual, developmental, or psychological impairments. This is inaccurate.

Bob is non-speaking, and uses alternative communication. In general world, people become impatient or dismissive because they do not want to deal with alternative communication. (This is similar to someone who doesn’t speak the typical language in a country they are visiting, unfortunately.) Bob goes to Accessible Town to meet his friend Sue, who is Deaf. People wait for his responses, don’t try to speak for him without his permission, and ask for help understanding when they do not. Bob’s other impairments might preclude him being able to learn much of the sign language his friend Sue uses to communicate, but her interpreter is great at making sure both of them can understand each other, even though they are speaking different languages and styles.

Bob is still non-speaking and still has intellectual impairments. But he is able to not only be actively involved in this community, but to communicate and hopefully have a good time with people with different access needs entirely. In this particular context, his impairments are not disabling him from this sort of participation. He has the support, both technically and emotionally, to be a full participant.

Some people see this as just a fantasy. The standard that they hold up as “too disabled” shifts to higher and higher support needs each time we try to explain how that hypothetical person could be supported. At some point, it has become a game, which is why my examples of the hypothetical Accessible Town will end. The truth is that what access looks like will vary by person. It isn’t an easy thing at all, especially in our current world, to create environments or communities that balance people’s access needs. This seems especially true when the most needed aspect of that process is patience and trust.

Note, if you will, that a condition that may be referred to as a disability might have traits that are not impairments in and of themselves. While stimming can be a coping response to an impairment, perhaps with self regulation or sensory hyper awareness, it is not necessarily so. In some cases it is simply used as an expression of emotion- atypical, sure, but not an impairment. The only disabling factor when it comes to stimming, barring those which involve self harm, is that other people are jerks about it and project prejudices and bigotry about how people are supposed to look. Essentially, it is simply other people’s assumptions, not the behavior interacting with the environment, that creates barriers. Yet it is one of the traits by which Autistics are diagnosed.

The next thing is something that I don’t know how to introduce properly. I see a lot of people approach the idea of Neurodiversity as though it is some new big thing completely different from other disability things. The truth is that it simply is applying the larger disability rights movement to the experiences of people with certain impairments, often defined as Autistics.* It is not some great new thing that we came up with via spontaneous generation, without previous foundations. It was built on the work of many people who live with a wide range of disabilities.

When we talk about both needing disability supports and treating our impairments as differences, we are not being disingenuous. We are not “talking both ways.” And it is not about denying legitimate supports. It is an incredibly nuanced issue, but one that can be summed up in a phrase that isn’t terribly new or specific to Autistics, and is in fact used on materials put out by the Administration on Intellectual and Developmental Disabilities (AIDD):

“Disability is a natural part of the Human Experience.”

This is the core idea here. Disability is one of many natural variances in what the human experience is like. It is not inherently shameful,  “freakish,” or unnatural. It does not rob us of our humanity– that is instead done by the perceptions of people. It is part of the amazing and beautiful diversity of our amazing species, Homo sapiens sapiens. It is a part of who we are and how we are put together.

This diversity can be powerful whether you are a religious creationist (indeed, there are hymns about this), an Atheist who believes in an unmitigated evolution, or any combination thereof. On a personal level, I believe in theistic evolution, and the vast diversity which allows for the survival of the species is something amazing and beautiful and spiritual for me. But I believe that the fact that we are so amazingly diverse, that we live in such a diverse world and are such a diverse species, is something that can be beautiful and powerful regardless of your beliefs. (Reminder: this is not a post about evolution or religion. These are tangential issues.)

When we talk about Autism or any other condition as a difference, we are not inherently denying that people with those conditions face disability. We are talking about how our conditions, and the impairments that might come along with them**, are a natural difference in the species. That those differences, like any number of others, should not bar access, dignity, or respect. That our differences are not things that should be eliminated, but that we should work towards a society in which difference is not a bar to access, be that because of changing attitudes or changing our physical environments.

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Talking about these distinctions isn’t something new. Please consider checking out some of the links below in which a number of other writers have covered similar issues.

That Crazy Crippled Chick: A Musing on the Word “Disabled”
Radical Neurodivergence Speaking: In this place, in this activity, I am not disabled.
Yes, That Too: Ableism is to Blame; A Social Construct
Autistic Hoya: Has an entire tag dedicated to this issue

Additionally, there’s a nice bullet-ed definition of the social model on the KASA website.

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* I personally consider Neurodiversity an issue that covers a wide range of individuals whose brains don’t exactly fit the “typical” brains or ways of working.
** Some people do not follow this, but they are a small subgroup who are often not aligned with the principles of the movement.

Messy

I don’t think it is a uniquely Autistic trait to desire things be cut and dry, for the lines and sides to be clearly defined, for things to be clearly explained. Perhaps the intensity with which we cling to it can be, and thus the frustration and bewilderment some of us have when it turns out not to be the case being so heightened. I disagree with calling it black and white thinking, because I think that negates the fact that complex mechanisms can be clearly defined if you know well enough what you are talking about.

I think instead it is one of the human things to various degrees. Obviously, not all humans feel this pull the same amount. But it is safe. While there are some people who engage in risk-seeking behavior, for many that I’ve communicated with deliberate risk seeking is about facing or even fighting off the fear that safety makes feel inevitable. When you retreat entirely into safety, everything outside of it can become frightening, unpredictable, a risk. Sometimes I do have to ask, though, if it’s truly risk-seeking, or if it is a form of fear-avoidance.

I went through a phase the year I graduated High School where I wanted to be something I wasn’t. While others might not gauge the risks I took to be the same as “risk-seeking”, it was the same mental process. But it was on the scale of who I am and how small a safety zone I have inside me. It was terrifying and running on adrenaline and “proving” that it was something I could do. It was mildly self destructive, and I had my first major agoraphobic episode the following year. I spent 6 months only able to leave the lot the little house I lived in with direct supervision, to places I knew were both known and safe– my mother’s and doctor offices. And my mother’s was once a month and only because my then Roommate/boy friend had to return to our home town for National Guard drills.

Our stories and feelings are all messy, complex. And as much as I believe complex things can be explained, broken down into the tiny moving parts like clockwork bits, there are things which defy it. I want desperately to believe in a unifying theory, much like Einstein to whom the quote “If you can’t explain it simply, you don’t understand it well enough.” is commonly attributed. But some things aren’t predictable, are running on quantum mechanics, are inherently uncertain. Sometimes there are factors other than not understanding something (communication disorders included!) that make the totality of our circumstances and world more than what some people can explain simply. Perhaps another person could, but when it comes to the experiences rather than the facts? Things are incredibly messy, and the end of our narratives uncertain.

Einstein tried to find the Unified Field Theory until his death, becoming more and more isolated from contemporary physics work. It remains one of the unsolved physics problems. There is a lot of hope to someday reach that, and one of the reasons why people seem so excited about the Higgs-Boson particle is that if it is more than to be expected perhaps someday it could lead there. I have hope that someday I’ll have the words to tell my own stories in simple terms, and that each attempt will lead to more than to be expected.

I have a post in my drafts about Physical Therapy, about body awareness, and about changing over time and what that has meant. I couldn’t continue writing it, though, because it became messy. I started out going straight forward about the things that I’ve perceived differently but generally beneficially about my body in space. But then I was hit with a flare in my joint pain– and the only different thing that had been added was that I had started a Tai Chi class modified for people with issues similar to mine. I had done this to work further on body awareness and my sense of self and movement in space. I ended up spending the next day in bed, and the next several days in a lot of pain.

It is an inherently messy thing, this shift in both knowledge and perception. It came from something that seemed to have a lesser risk than other things I’ve done, and it was unknowable until it happened. Indeed, until afterwards when my body had settled down from the endorphins enough to be aware of the consequences. It’s a reminder of the uncertainty of everything, that we cannot predict everything, as much as even Einstein wanted us to.

When I wanted to be someone else, and even before that, my feelings around disability were messy and striving. While I embraced that I am “crazy”, a person with significant mental health issues, I avoided desperately the other parts of my being that were disabled. I clung to intellect, avoided and denied many of the conversations about my possibly having a developmental disability, swore that I no longer struggled with the same issues that delayed my ability to read by years, avoided the discussion of my experiences of selective mutism. I tried desperately to be “just” crazy, just a manic pixie girl (I never fit the dream part), to suit a limited sphere of what I thought was safe to be.

There are things that I said and sometimes even believed then that I hate myself for today. Eugenics, something I am now fiercely, passionately against seemed somehow a differentiation then, something to prove I wasn’t a “them” with. I used the R word profusely, partially out of habit and partially to distance myself from the times I had been called that as a child. I clung to academic achievements not only because it was something in an environment that I could achieve in, but that I hoped it would contradict the times I had been told my worthlessness. Towards the end of that period of my life I started to see the things I had talent in as simply talents, but before that it was the way to prove myself, to tell people I was not what they wanted to predict of me.

My past is hideously messy. The things I did well, the skills I learned, are overshadowed in my mind by this– how much I didn’t want to be me, and how much I was guided by a desire to deny half the things that form my experiences. It’s horrible, and messy, and confronting that is hard. I know that much of it was ableism, internalized and let to fester, but I still hate that that is a part of my past. That I could have been that person, and to be the person I am now. To desire the ambition and impetuous while despising the things that surrounded and directed it.

It is messy, and it is uncomfortable. It is also true.

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I am a layperson when it comes to physics. I’m sure I’ve over simplified or mis-connected some physics bits. But they are the simplifications and mis-connections that best analogize the emotions I have right now about this topic. If you want actual physics awesomeness, I do rec that you check out Minute Physics on Youtube. (Note: I don’t think they are captioned, though I do believe that their production team would be open to use captions that people produce, as time and budget are the big barriers.)