This week, I got an invitation to play at a school and meet students. They want their kids on the spectrum exposed to autistic adults. Meeting such children is great but slightly fraught. Do they have expectations? If so, what are they? Do I measure up? Did well-meaning adults drag them into an encounter they may not want yet? Do they have it better than I did at the same age? Are they more sheltered than I was? Do they feel safe?
I hope so. I came to the realization that I was different and discovered oppression around age three. The oldest ones, young teens, need to know what they are up against. I hope the kindergarteners do not. Nurtured through their early years by adults who see nothing broken about them, will they be spared the PTSD etc. that plague my cohort, or will dealing with the real world be all the more jarring? I hope they will be happier, less damaged, less angry than many of us. I hope they will grow up feeling entitled to all the opportunity their allistic peers enjoy.
I thought hard about a brief set list for the occasion, came to the conclusion that two things have to be on it:
This suits the tuba. I like to play it fast for kids. It sounds impressive enough to get them excited with improvised, jazz- and swing-style curlicues. The lyrics, not that anyone will hear them, are clean. They are dated in that “man” stands in for person, but the message is positive. I hope they grow up feeling like all its ‘wants’ are within reach.
I also have to play this:
I respond to requests to help parents out of concern for autistic children. I trust some, but, taking them at their word that a small percentage will harm kids without help, treating requests for support as life-and-death matters logically follows. I never turn them down. However, I deal with children directly for different reasons, in someone else’s memory. Hundreds of miles away, before most of the kids I will meet were born, I listened to that song with an autistic adult who took an interest in me in a car that smelled like Camel cigarettes. No one outside of my immediate circles needs that name.* I never refuse a request to meet children because I felt something rare in that car: safe. Before I had a word for what I was, I suspected that there was at least one more. I thought I might not be alone. I cram kids into my schedule because they deserve to be sure of what I half-believed. I got by on that hope for years. There is no telling what they can do if they know.
*I have shared most of my history with this cause. The stakes are too high for anyone to hold potentially-useful story back. That name is one of the few things I hold too sacred for the grubby hands of factions harassing each other online and IRL. Someday, if I make money and other surviving loved ones approve, there will be a fitting tribute. Until then, rare silence in the information age is the best I can do.
I decided things had to change. I still have to figure out how. Less, not no, neurodiversity seems to be in the cards. There are too many wild edges, too few rules about acceptable behavior. I compromised for a while but saw more than I could accept. I took a few days to grieve and clear my head. The sense of missed possibilities due to one small barrier of conscience is hard, but I need a code that calls some things unacceptable like the next beat of my heart. Solid ground is hard to find this world. I did, will, need things to fill the hours. I have a new venture in the works. If it pans out, I can travel and volunteer at a local, inclusive center for people with and without intellectual disabilities all summer instead of working retail. Maybe I can make an internship of it. For now, I will teach a friend to drive.
If I can find the right venue, I might write accessible explanations of important things for people with intellectual disabilities and others. I have toyed with the idea before. My conflict with The University of Chicago Hospital made it seem urgent. Apparently, the witness signature was about verifying my identity, not treating me as incompetent. No one would tell me that until I shouted my way to their lawyer. People with less understanding of their rights, more blue collar sensibilities about authority figures, or without the ounce of entitlement that comes of growing up white in this society might have left empty-handed. A Southerner, less willing to tear every human obstacle a certain new orifice, would have struggled. Delays only ended when I stopped trying to be nice. People, especially segments of the disability community, need these things in clear language.
I can be a good board member. This year, I will run a self-advocacy committee. That starts with creating one. I will do small, ordinary good, play tuba, and ignore the social justice crowd as much as possible. I may try to go to church more. Most of all, I will study hard, become the best lawyer I can, and advocate for children in the public schools. The work will be hard, quiet, worthwhile.
That may be the best fit for me. The only label or title that has stuck is ‘tuba player.’ I am not a boiler room person so much as the furnace. I always find uses. I was born for subtle-yet-critical bass lines, long days, heavy loads. Anything could happen to my blog. I might shut it down, leave better posts as a finished resource, or continue. It may or may not fit into what my life will become. There is no reason to rush the decision. I can make all these choices deliberately, looking for the best route to my goals. If options do not exist in satisfying quantities, I will devise more.
I was emailing, shamelessly marketing myself for new busking opportunities. I may have invited myself to a new venue. I have been thinking about how music will stop being my income soon. When tuba is a low-pressure cross between hobby and spiritual practice, these skills will remain. I think they will come in handy.
That is all!
[The .gif is a dancing conductor].