In this post, I want to explain more where these few lines came from in my poem about what revolution is and is not.
Liberation is squeezure of our bodies into wrong or right unruly or beautiful contained or free
Of our minds into intact or unworthy, angelic or violent, parts or people
Silent telepaths closer to G-d or satanic queers destroying all that is holy
Our needs into low or high, level one two three
independent or dependent guided or autonomous
Squeezing our lives into a narrative a theory the one story to outrun the rest
To leave the rest of us behind
The intact mind part is something I wrote about in my last post. How intellectual disability is not just a myth used to oppress nonspeaking and apraxic people, but is word that means real and amazing and valuable and rights-having humans who our theories can’t leave behind. Today, I want to talk about how the dicotomy of “ uncooperative body and brilliant mind” affects me even as a nonspeaker who does not as far as I know have an intellectual disability. The narratives and ideas I surround myself with change how I feel about my body. They affect what expectations I put on myself and what I think the world wants of me.
I have argued with myself lots about why I am focusing so much of my writing on criticize stereotypes, binaries, hierarchies and dangerous assumptions in my own community: nonspeakers and the people who support us, usually through Spelling to Communicate, RPM, FC, or other “ non – mainstream” text based AAC methods. These are communities that have saved me and showed me that there are other people like me and they are alive and fighting for our freedom. When I lost the ability to independently type, it was a modified version of RPM that gave me the power and safety and all the little germinating joys of something as human as having a voice. It is the speller and typer community where I find the people who come closest to knowing what my life is like, who move and talk and have been silenced and freed like me, and who communication is still so precarious. This is already a throughly attacked community. so many powerful people want to shove our voices in their test tubes, declare us Ouija boards or clever trained horses because we threaten the order they depend on. My own criticism might only fuel their flames.
But from being born I have always been told to pick one option out of two or three: from attach food, stickers or break to the I want card in your PECS binder, what do you mean there other things you could want to say to stay in the gender binary because too disabled to understand implications of anything else to you or your parents can’t have asset more than $3000 if want to get healthcare and DSPs and stay out of institition. When you are nonspeaking (or disabled in general , or LGBTQ or a person of color or unfree in any of the ways the world unfrees people), the world demands your body and brain to stay put stay static stay fixed. To not wobble, to not be complicated.
And I criticize the spelling community when it does this because it is home. Because it is the only community so many nonspeakers know. Because to be in the community, and to agree with all the ideas non-disabled people in the community have about our lives, seems to some of us a condition of having communication access at all. Because these ideas can seep into our brains our bones our fingers and tongues. And what was meant to empower can make us feel awful about ourselves.
So without further ado:
I refuse to denigrate my body.
Many names have been gave to the body I have — global apraxia, epilepsy, intestinal dysmotility, catatonia, and low muscle tone are some. I am the first person to admit that this body is a difficult one to live in. Its struggles with intentional motor mean it is not graceful, it is not poised, it is not delicate. It crashes into things and people and itself. It can point and pull and push well, sometimes with good precision, but cannot do any motor task with squeezing or gripping or twisting. It cannot stop or start moving on command. It collapses, convulses, fades in and out. It ruminates and regurgitates many things many times a day — thoughts, actions, undigested food. When pain or memory or sadness or trappedness come, it attacks its own without end. It is too strong and not strong enough.
And yet this body is still so thoroughly MINE. This is hard to believe as a traumatized, dissociated person ( even aside from being nonspeaking), but even when parts of me reject it, deny that they live in it, it is OURS. Actually, to me the words unruly and uncooperative for my body can be positively rebellious too — my body doesn’t cooperate with me, but it also doesnt cooperate with systems of power. My body cannot be contained when I want it to, but also others can’t contain it and that is a good thing. My body is sick (from other things, not from autism it self.) It is complicated and messed up and beautiful and broken and joyous and impaired and comforting all at once. But all that is okay. And that doesn’t mean my life should now be focus on constant quest for secret cure, on quest to be pure and heal no matter what cost. No, it means my body was made this particular way.
There is a certain kind of way that some other nonspeakers (+ CRPs and parents) talk about their bodies that makes remembering this very hard. I feel very bad when I talk about this, a sense of betrayal. Because other people are using words that they need for their experience living in bodies like myself, and bodies more complex than mine is. I will never judge another nonspeaker for seeing their body as a prison a cage of silence a thing of trappedness because it’s similar to the trauma that fuels the “ we’re not cognitively disabled” thing I talked about in last post. It comes from the painful realities of our apraxic bodies and how the world punishes us for what we can’t control.
But it’s hard not to flinch when I see nonspeakers (some teenagers or preteens) calling their apraxic body “stupid” or “foolish” or “childish” or “monstrous.” I still do not judge, and I know that presume competence means you have the right to self deprecate as much as abled people do without condesending correction and “dont say that”. But it makes me sad for them, and sets off awful feelings about my own body. It makes me feel like the body shouldn’t exist, like it is a “silent cage” (a phrase I have become so tired of, when repeated by our speaking allies) that must be exiled so my soul can be set free.
But so many people especially in new generation of spellers almost taught to stay at“ autism is the enemy “ or switch to “apraxia is the enemy” and I do not think that is healthy. I am very upset and scared for young kids who are being taught to hate their bodies. And the concepts of “my body is bad” and “my mind is okay (meaning ‘not intellectually disabled’ much of time)” and “I can communicate now” and “what happened to me was wrong” all get garbled up together and feels like to reject one is to reject the rest. And think that is why so many people stick to same script that is sometimes very self hating. (Besides the fact many of us are echolalic and we echo language from communities we are in.) Because to reject one part of that tower is to let the rest come down and to be not a person again.
But, what makes me absolutely furious is when parents and practicioners talk about their kids’ or client’s bodies as stupid or evil or unruly, when they are not even quoting the person. The way young nonspeaking kids are specific taught to use this language. I don’t think it is good for disabled kids of any stripe to see their bodies this way by default. And sometimes it feels like when spelling communities use words like liberation and freedom, they are talking about freedom from bad bodies more than they are talking about freedom from presume incompetence, from ableism and oralism and racism and homophobia, from profit over people, from everything in the world disabled people need to be free from.
Part 2 coming soon. I will talk about the “brilliant mind” and “enlightened soul” ideas people have about us. About the expectation we are all automatically forgiving and compassionate and do not have all the emotions that trauma survivors have, that we have after being deny communication for so long. And why the right to be ordinary people is something we deserve.
A Trans Typer’s Tremblings 