The Comment I Sent To The House

Discrimination and accommodations are two of the biggest issues Autistic adults are facing. No matter what the laws might say, discrimination against autistic adults is A Thing, and it is a big problem. And guess where it comes from? It comes from the attitudes about autism that are currently mainstream, that are spoken nearly every time autism is discussed. No one wants to hire a public health crisis, even if the health crisis can do the job. No one wants to hire a tragedy, even if the tragedy can do the job. No one wants to hire a situation or an epidemic, even if the situation or epidemic can do the job. And no one wants to hire a burden, which makes calling autistic people burdens a self-fulfilling prophecy. Illegal discrimination is a thing, and ADA lawsuits are not an efficient way to handle that- not every Autistic person has the resources to file and go through one, especially with the lack of employment that comes from this discrimination.
Even in healthcare, where the ADA and the Rehabilitation Act BOTH state that this sort of discrimination based on disability is not legal, it happens. The petition on the White House site about organ transplant denial to "people with autism," (http://wh.gov/X4yM) or Autistic people as many of us prefer to be called, is not there purposelessly. It is there because doctors are breaking the law by discriminating against Autistic people and because someone who needs an organ transplant is not likely to be capable of dealing with an ADA lawsuit.
Or there is the issue of accommodation. The simple solution for a business would be not to hire an Autistic person, but that is yet again, discrimination. Assume, then, that this person has gotten hired or has gotten accepted into school. In either case, getting any accommodations requires disclosing Autistic status, which opens them up to discrimination. Even post disclosure, clearly reasonable accommodations such as "I am allowed to bring in my own noise-cancelling headphones and use them to reduce the noise level," or "I am allowed a quiet, non-distracting fidget toy for times when my hands are not actively required" are not given. In many cases, those basic things would be sufficient. In others, "Text-based and face-to-face communication are to be used whenever possible to communicate with me and phones to be avoided" is the needed statement, and that, too, is not given. These are accommodations which do not cost anything to provide, and yet they are not given. This sort of basic accommodation would allow so many Autistic adults into the workforce, but is rarely discussed as a needed policy change. It's needed. It may be the most efficient method of making Autistic people more self-sufficient, and that is a goal I expect those worried about the costs of autism to have.

Additionally, more Autistic voices are needed in any conversation about autism. I strongly suggest reading the entirety of that which is written for Autistics Speaking Day, of course, but here is one.
 Autistics Speaking EVERY Day.
This post can also be found at the Autistics Speaking Day blog here.

Today is Autistics Speaking Day. (Unless I messed up my queue or I messed up which day it is or blogger is broken. But I'm assuming that none of this happened.) Today is a day when we all (or as many of us as can executive function in time to write/submit something by today, which is why I am actually writing this all the way back on September 21st) write something about our lives, our experiences, whatever as far as I can tell.
And what I have to say is that we speak EVERY day. Not all of us do it by talking, and even those of us who do aren't always consistent about it. Not all of us do it by typing either, though that is how I am speaking today
Having a day when we all get together and speak is great as a community thing. It's great for flooding people with reminders that we speak all at once. It's great for reminding us that we can speak out.
And I want to use that one BIG day to make sure we all remember something important: We all speak every day. When I stim in public, I say that I am not embarrassed of how my brain is wired. When I get done what I want to get done, I say that I am NOT inherently broken. When I smile, I say that I am not purely tragic, that I can be happy. When I decide that I do want kids of my own, I say that no, being autistic is not a horrible thing that I wouldn't risk passing on. It's something I feel perfectly OK with. I say that I am OK with bringing more autistic people into the world. When I melt down, I am saying that something is wrong. Whenever I do anything at all, even just sit there and not really do much, I am saying something about who I am and what I think. We all get to say things like that.
And sure, educating people isn't our job. I know that. I probably do more educating than I really need to because I like to teach, but I am aware that specifically educating is not my job unless I'm getting paid for it (only in math. sigh.) So rather than spending lots of time explaining everything over and over again, I ask: Do I act like I find my life and the lives of those like me tragic? Does Henry act like his life is inherently tragic? How about Kassiane? How about Ari? How about Amy? How about... and I continue. We don't act like we think ourselves tragedies because we don't think ourselves tragedies. We act like we matter because we do, whatever some other people might think. When we act, we speak. Today, what we say is that we do speak. Today we remind the world that we are people with our own ideas and our own opinions, and that we can and do communicate them. All they need to do is listen.

This is what happens.

Trigger Warning: Murder, threats of murder, abuse

Did you think I was somehow exaggerating when I said that our lives could be on the line? A family is missing now, a family that came here from Vietnam to treat their autistic four year old daughter. They made a pact that if they ran out of money or if their daughter did not improve, they would kill themselves and both of their children. The autistic daughter is four years old, and they want a huge difference in her behavior now or they kill her, and guess what? All four year old kids are difficult, but the tragedy model of autism has everyone convinced that the autistic one won't get any less difficult as she gets older unless huge intervention happens, and so we get things like this. A family of four could be dead.
Or Alison Springer says in Autism Every Day how she has fantasized about driving off the George Washington Bridge with her autistic daughter and only hasn't because she has a neurotypical child at home. Within a week, a mother killed her autistic kid. Do you think that's a coincidence? I don't.
Or the mother who killed her six month old child who wasn't even autistic because she somehow decided the kids was autistic, and "when you have a child with autism, your life is ruined." That really happened this year. That is the tragedy model right there, killing someone who wasn't even autistic, just as it may have done or may soon do with this family that came here from Vietnam. (The two year old isn't autistic.) It's not just our lives that can be lost to seeing autism as a tragedy, though our lives should be reason enough to quit it with that mode.
It's clearly not, of course, given what the congressional hearing looked like. According to them, we're all vaccine-injured burdens, somehow ignoring the fact that the autism rate isn't any lower among unvaccinated people and the fact that calling someone a burden is a horrible thing to do and the fact that insisting that we are all burdens can be a self-fulfilling prophecy in that no one wants to hire someone who is supposedly a burden.
So if you ever want to know what happens when autism is treated as automatically tragic, when autistic people and their families are considered to be victims of autism, the answer is this. People die.

Panel Event on Disability and Inclusion in the Humanities

One of two things I wrote for the ASAN November Newsletter.

On November 14th, shortly before the ASAN annual gala, there was a panel at Georgetown called “Disability and Inclusion in the Humanities.” Lydia Brown, ASAN intern, writer of Autistic Hoya, and Georgetown student majoring in Arabic and Psychology, arranged this panel. Four speakers were invited: Kassiane A. Sibley, a current pre-med student and associate editor of “The Thinking Person’s Guide to Autism”; Elizabeth J. Grace, an assistant professor in Diversity in Learning and Teaching at National Louis University and writer of Tiny Grace Notes (aka Ask an Autistic); Renleigh Martin Spencer, a member of the Disability Center planning committee at Georgetown; and Ki’tay Davidson, the Director of Ableism Awareness and Community Outreach for the Disability Rights Coalition at American University.
All four panelists were people with disabilities. Both Elizabeth and Kassiane are Autistic, and all four had personal stories to share above and beyond the discussion of the broad institutional issues that people with disabilities face in the humanities. Ableism–discrimination against people with disabilities–is a huge problem. Examples of ableism include making people get a more recent evaluation (We need to make sure you’re still autistic/dyslexic/using a wheelchair!) in order to get any accommodations, giving only the bare minimum of accommodations and that only grudgingly, insisting on viewing disability as a purely medical issue with basic accommodations that should mean the person now functions exactly as a non-disabled person does, and ignoring the existence of people with disabilities as people who are a part of the human condition. Kassiane noted that she needed to constantly remind her professors “that my … condition is the human condition. I am a person too,” and Elizabeth recalled that her fellow professors were the ones who had the most difficulty accepting the value of disabled perspectives on disability. Her students were excited to hear what disability was like from someone who actually experienced it, but her colleagues insisted that it was neither rigorous nor academic to use personal experience in this way.
The idea that disability could be an identity was also a big discussion point, both as something that is important and as something that still needs work. Kassiane told the audience about having to look up the sign for “Autistic” and how her American Sign Language teacher tried to correct her from saying “I’m Autistic” to “I have autism,” ending with Kassiane asking “You have deaf?” Of course he didn’t “have deaf”- the idea of Deaf and Blind being cultural identities as well as disability labels is more accepted than for most other disabilities, though even those communities are occasionally subject to others insisting that they are people with their disability, that they should “not let their disability define them.” While this separation from disability as a defining attribute was a step forward from concluding that a disability meant spending life hidden away from the rest of the world, it does not allow for a sense of group identity or for the inclusion of disabled people as a group in the same ways that other marginalized groups have aimed to be included–as a group of people that are different and whose differences are a part of their identity, not a medical issue that has nothing to do with who they are. Ki’tay noted that “We need to bring it (disability) into the cultural realm,” and Renleigh agreed, stating, “Any sort of identity studies should come first,” and talking about how we need to understand oppression in light of disability. These facets of disability studies are all important, and the panelists explained the importance of all these facets, their interactions, and the importance of proper disability studies in creating a culture of inclusion both in the humanities, and in society as a whole. Renleigh holds that promoting disability studies in the academic world will also promote disability culture in society, which is an important part of proper inclusion. Inclusion of a group should not depend on pretending that this group is exactly the same as everyone else, but on accepting and embracing the differences, and that requires more than a purely medical model of disability that ends at simply providing needed services.

Not Safe

Trigger Warning: Discussion of abuse, murder of autistic people FOR being autistic

It's not safe. That's what we all have to remember.
Our lives really might be on the line. That's what we all have to remember.
It means that "Don't listen to them" isn't really an option. When something comes up that includes more stereotype of who we are, when we are called burdens and tragedies and epidemics again, even when something that a casual observer might think is small, it can't be ignored.
You can tell us not to listen if you want, but this is what response you'll get:

"When the law is written to make murdering us for being autistic a hate crime, only then will not listening be an option. Until then, every word or turn of phrase designed to poison minds against us must be answered."- Dean McIntosh

I don't even trust that, though it is a necessary condition. Discriminating against Autistic people for healthcare is illegal, and it happens. Discriminating against Autistic people in the workforce is illegal, and it happens too. I need it written that murdering us for being Autistic is a hate crime, I need it written that abusing us for being Autistic is a hate crime (if it would be abuse to do it to a non-disabled person for the same offense, it is abuse to do it to an Autistic person as therapy.) And I need it to be prosecuted as a hate crime, every time. All too often, even things that legally are hate crimes aren't handled as such because no one cares about the group it was a hate crime against, and seeing that happen while our murder is legally classified as a hate crime is nowhere near sufficient. Hate crimes against us need to be treated as such, and now many are not even recognized as crimes.
There is a list of corpses. Our corpses, of those of us who were murdered by our caregivers, and it's not even complete. It' a partial list of what got reported, and people keep trying to frame them as mercy killings. That's what telling people our quality of life is reduced by being Autistic does. (well, by having autism in their words, since the people who think this want to believe our autism somehow separate from ourselves, which just isn't so. You want to separate someone from their brain? I've gone through several traits of mine I thought had nothing to do with my being Autistic... let's just say I was wrong and they do.) That's what calling us vaccine injured does. That's what calling us a disaster, a crisis, an epidemic, a tsunami does. In the end, it's what the awareness you are probably proud of does- conventional awareness kills. (Awareness a la Autism Speaks is a good example of this.)
With lives on the line and the legitimate fear that ours could be next, from a caretaker or from a healthcare system that thinks saving us is somehow harmful or from simply being allowed to starve while awaiting services, "don't listen to them" isn't a legitimate option. It's the option of covering our ears and closing our eyes and pretending not to notice as Rome burns down around our ears.

Finding Home at the Gala

The other of two things I wrote for the ASAN November Newsletter. 

On November 14, I also went to the ASAN second annual gala. I was almost an hour late, having gotten stuck in traffic on the way from the Disability and Inclusion in the Humanities panel to the gala with the organizer of the panel and a few of the panelists who were also attending the gala, but what I arrived to was more than worth the wait. When I arrived, it was to…Autistic space!
Autistic space is not like neurotypical space. In Autistic space, stim toys are readily available, such as the blue ASAN Tangles at every seat, and carrying them with us to fidget with when talking to other attendees was completely normal. Instead of the loud clapping applause normally used, we use jazz hands or flapping at the end of speeches or anywhere that clapping would normally be appropriate. That the inability to use spoken language and having nothing to say are two completely different things is accepted as a fact, and is not an issue that leads to continuously needing to prove and re-prove competence. If and when a topic is difficult or triggering, it’s considered acceptable to step outside. There is no need to apologize for acting visibly autistic or for the “forgetting” of faces that can come from face-blindness or from simply not looking at people. Sure, this was a gala at the National Press Conference, but that didn’t mean that we suddenly needed to act like neurotypical adults at their most formal–the social rules common to the outside world need significant modification for use in Autistic space, including a requirement of being as direct and clear in communication as possible given current language abilities and a complete suspension of asking for eye contact. That’s what I found at the gala. I found people talking about important things in language I could understand and being OK with the people fidgeting and flapping and looking off in a completely different direction than the speaker, knowing that this was simply our natural way of being, not some attempt at disrespect.
I heard about self-advocacy and including people in communities, about the importance of Alternative and Augmentative Communication, and about needing to stand together. I heard about not letting the world isolate and mistreat any group that they were somehow convinced was really the group to isolate, no matter how much “but this time we’re sure!” we might hear. They’re never as sure as they think they are, not with Autistic people and not with anyone else. I heard more about the Loud Hands Project, which I submitted a semi-poem to, and finally got to see the video used for fundraising for it. All things affirming the acceptance of autism as a difference that is a disability not in need of elimination or cure, but simply support for a different way of being, were to be found at the gala–it was one of few spaces where I felt completely safe.
Kassiane wrote after Autreat that she had found her family, that it was the Autistic community, and after traveling to Washington, DC for the annual gala, I have to say the same. The Autistic community is another family for me, one that makes sense and that understands both the advantages I have and the difficulties I face. The Autistic community understands that this is who we are, for better or for worse. The gala itself may have only been two hours out of a busy day, but in a world that is not yet designed for people with brains like ours, it meant family and it meant home.