We held a dialogue series last week between parent Robert Rummel-Hudson, author of Schuyler’s Monster and blogger at Fighting Monsters With Rubber Swords; and self-advocates Zoe, blogger at Illusion of Competence, and Ari Ne’eman, President and co-founder of The Autistic Self-Advocacy Network.
Readers let us know that they wanted more, and more perspectives, so we’re continuing the series through this week, and original participants Zoe, Rob, and Ari are stepping back and letting other voices have the floor.
This week’s first post was from a representative of both parties: Melody Latimer, director of The Autistic Self-Advocacy Network’s Dallas-Ft. Worth chapter, and blogger at ASParenting. You can read the entire series at thinkingautismguide.blogspot.com/search/label/dialogue
For those who note that these Dialogues are a challenging and thorny process, and wonder about the usefulness of participation, consider a comment left on Melody’s post by OutOutOut:
“I’m tired of the fighting, too. I really am. Still, I think the only way we’re going to ‘move forward’ is if we get all of these painful issues out in the open, and try to deal with them head-on. As the saying goes, “Peace at any price is no peace at all”. We’ll never get to a place of true acceptance and camaraderie if we continue to sweep the problems under the rug.”
Today’s post is from Kassiane of Radical Neurodivergence Speaking, who prefers the term “advocate.”
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Dear Parents,
Believe it or not, I am on your kids’ side. I want what is best for your kids too. That’s why I do what I do — so your sons and daughters inherit a world that is less hostile and easier to navigate than the one I grew into. Your individual advocacy on behalf of your children is your job, and to my knowledge no one is saying it isn’t. But in terms of general disability rights work? That is the domain of disabled people, and it needs to be recognized as such.
Before you get all mad at me, let me tell you a story:
I spent the first six months or so of 2004 living at a YWCA shelter. Not all parents work for their children’s welfare, you see, and I am speaking from personal experience there. I was going to school and working very part time coaching and my parents decided they didn’t want me anymore (this after years and years of abuse. Old story, you probably know it).
So the first thing one does when one lives at a Y is try to get the social service safety net going, right? Here’s the thing: I can’t do that. It is a lot of paperwork, a lot of redundancy, a lot of waiting around in a sensorily terrible environment and then talking to a terse person who just wants you to go away in an even more terrible environment. People from the shelter helped, but basically it was horrible and difficult and awful.
Since I was (and am) disabled in addition to homeless, I also explored the options available for people with disabilities. We had an ARC and a Center for Independent Living (CIL).
Guess what?
I could not get a single solitary service from either of these places. The CIL barely knew what autism was; they dealt mostly in physical disabilities and they were less than helpful in filling out forms or narrowing choices down for housing or anything — things I desperately need help with. And the ARC?
Oh god, the ARC. Let me tell you what they said: “we usually deal with clients’ parents.” I was there because I very suddenly had no parental or other net. But they wouldn’t help me, even a little, because my parents were very much not in the picture. They told me that I was too smart for most of their stuff, but they wouldn’t help even a little with anything else because they interface with parents rather than clients.
In those six months, I did not fall through the cracks — I was shoved into the cracks. The paradigm that only parents can advocate for disabled people could very easily have killed me, between undertreated medical issues and a fundamental inability to get done the things that needed doing for basic survival. It was too much. I could not do it alone, and there was no one to turn to for help. Not all parents are good; please please please acknowledge that, even if it’s just a quiet whisper.
A lot of autistic and otherwise disabled people are shoved into the cracks by systems like this. It scares the everliving snot out of me that the status quo is that the parents of adults with disabilities are the only gateway to services in many areas. The status is not quo, in the words of Doctor Horrible. I got lucky — many many other people living my 2004 situation aren’t going to even make it to the 2005 situation, much less the 2011.
It is absolutely your job to advocate for your minor child. Please don’t take this as me saying it isn’t — I know my parents are screwed up. I know most of you are not. But please, don’t let your knee-jerk reaction be to assume that all parents are like you. They aren’t. Some are like mine. Please don’t erase that by saying that you know no one like that. Please don’t diminish it by assuming that if I call out a societal problem or a possibly problematic attitude or behavior that I am unable to separate my upbringing from what you are doing for your children. I know the difference — I wouldn’t be engaging at all if I thought most or even many parents were like mine.
We need to be a louder voice so that this doesn’t happen. It’d be extremely helpful if the group with more power — parents — acknowledged that this is a problem and that it does happen. The cracks are an unpleasant place to be.
And I do want allies. Your primary responsibility is to your children, obviously. But I know I wouldn’t turn down support in other things we do, either. I fight a number of uncomfortable battles so that your children won’t have to (at least ideally). It is hard and it sucks and I mostly have to do it alone, for autistics helping autistics are taken exactly as not seriously as an autistic alone most of the time. There are times I would love so much for a supportive set of allies, instead of my choices “be alone” or “hear how you are so lucky that you can even go to school/ride the bus/go dancing/blow your nose and that therefore your issue does not matter.” Crappy dilemma, huh?
Story time, round Two!
Last term, I signed up for a rock climbing class at a community college. I get accommodations through Disability Services, so I requested a meeting with the instructor before the term started. He declined a meeting-which is probably the first bad sign. So I sent him my standard “I have partial complex seizures and this is what it means” sheet. And he was cool with that.
Some context for what happens next: I am pretty athletic. OK, so I used to be a high level gymnast. Climbing a fake rock wall while wearing a harness and a rope that is tethered to someone on the ground is something it is absolutely reasonable to expect I can do. Also, I am left handed, which shouldn’t have even been a thing, but it was. Continuing…
The first day of class I was trying to translate the belay technique from right handed to left handed. No big deal, except that the instructor seemed completely baffled by the idea and kept trying to make me do it the “right way.” A bit frustrating, but whatever. I was thinking about making the equipment and motion work for me rather than thinking about making my body language relatively normal. Horror of horrors, I flapped.
You would think that every time an autistic flapped a kitten died or something, based on the instructor’s reaction. He got in my face yelling about bad energy, I got stuttery (as I do when large loud men are in my face), and I blurted out that I’m autistic.
Then everything hit the fan. It started with “I don’t think you are capable of assessing the risk involved in rock climbing. Maybe yoga would be more your speed.” Suddenly this man who was OK with the idea of a student having a seizure in class developed an intense concern about safety.
This has become a big battle, like your IEP battles. It started with “I don’t think you can assess the risks inherent in rock climbing; maybe yoga would be more your speed” and progressed to convincing four of my school’s deans that I am a safety risk to myself and other students. Why? Because I am autistic. Because the instructor doesn’t believe I understand what he says, though I can paraphrase, because I do not look at him and I rock back and forth. My very existence as an autistic adult is apparently dangerous.
Fighting the school’s discrimination and bullying is the hardest thing I have ever done. It’s me versus pretty literally the entire power structure of the school. This is not my idea of a good time. It is a legal battle and an infrastructure battle and I lose sleep and appetite over it and I hate it. Giving up would be so much easier.
But I don’t. I fight this fight so that the next kid doesn’t have to. I know several disabled young people who would be stuck with this fight in three to five years if I don’t do it now. There are countless others who I don’t know who would be stuck with it if I don’t do it now. This bullying stops here and now.
And it is hard. And I would love allies, but instead of allies what I get is “you’re lucky you can take a class like that at all, my child can’t” or “well, maybe you shouldn’t do that, anyway. They just are looking out for everyone” or “I understand that you are upset, but isn’t fighting it just too much stress?”
This kind of dismissiveness is not helpful. It does not help me. It shuts down changes that will benefit the next generation. It spreads that rift just a little further. It increases the power imbalance ever so slightly.
This is not what I want for me, and it isn’t what I want for people like me. As long as advocacy is seen as a limited resource, though, and a battle for who can be heard the most on the most issues, it will be. The disabled community and the parent community have a lot to offer each other besides hostility — there’s enough of that already.
Neurodivergently yours,
Kassiane
