The last thing I posted was sad, so it was nice to see good news. The House Ways and Means Committee is looking at making social security and work less of a catch-22. There is a place for the public to comment. If you have a story or opinion, this is a good time to share it.
The last couple of weeks dragged me across over 1,000 miles and seven towns with no end in slight. There have been gigs, heretofore unknown cousins, research misadventures, and the miseries of breaking in new work books. Last night, I was lounging in a comfortable chair, trying not to move. I wanted to sleep but had fidgety thoughts.
They killed another one. They nearly severed his hand, called it mercy. The headlines say they were desperate. Less sensational articles note that their state offered help. They refused it. Their suicide attempts were pitifully insincere. As thorough as they were with Alex, it is odd that they failed to spare the good people of Illinois the expense of their trial. They seem to be getting more sympathy than their victim. People assume that autistics, the disabled in general, are so different from everyone else that killing us is humane. What is beneficial and desirable to others is not so to us.
Here in Georgia, we have an Autism Speaks-sponsored bill that would incentivze ABA. That is never good. This is particularly infuriating because they are parading a child around as their mascot. She seems like a great kid. I like her just from the Facebook photos. If her parents care what is best for her, they think it is being an activist.
When allistic children have public lives, we worry. Sunlight, not limelight, helps growing bodies and minds. We sigh over child stars. They are cute now, but life will be difficult for them unless they make the transition to adult acting. Many now-grown kid celebrities’ lives are train wrecks. They are anything but healthy, happy, well-adjusted, productive adults. We admire President Obama and the First Lady, whether we like their politics or not, for keeping their girls’ lives quiet, normal. Sasha and Malia turn up in the occasional Facebook photo, but their parents seem to keep them mostly out of politics and public life.
One would think that public portrayals of the first family would be a reflection of society’s wishes for all its children. Autistic kids are apparently so weird, so special, as to be an exception to the rules. Autistic youth do not necessarily need real childhoods, where they learn advocacy without being expected to man the barricades. Autistic children, autistics in general, are not thought to need and want the preservation of life, the awe-inspiring drive and common feature of nearly all beings. This is ableism at its finest: those people are such freaks that murdering them, committing one of the most viscerally disturbing crimes that others fear and dread, killing them without their consent, can be an act of mercy.
Even if you share my belief that Alex went home to a god who received him like a favorite son, that boy lost everything his life could have been. He had many more years. Nothing can compensate him for a lost future that might have been wonderful. He will never feel the sun of our world on his face again. He suffered agony and terror at the hands of those he loved, trusted most. He was robbed of the chance to realize whatever dreams he might have had. If you feel one iota of sympathy for Alex Spourdalakis’ killers, you are part of the problem. Rethink those feelings. Start working on changing society’s sense that the disabled are so different that the general rules of basic human needs, wants, and welfare do not apply.
I have eight credit hours and a grant to study Georgia’s Central State Hospital, once the largest such institution in the world. I plan to seek IRB approval, so it is likely that I will be able to talk to vulnerable people. I am willing to be discrete. This story remains untold to an amazing degree given the number of people involved. I would love to hear from anyone who knows anything. If you would rather not reach out to me on Tumblr, drop me a line at firstname.lastname@example.org. The other way you can help is by passing this on. I need all the signal boosts I can get.
Click the link. It is happy, a textbook example of a parent getting it right. If you are a parent and cannot come to terms with the child you have, you are in the wrong. If you are on the fence, imagine your child as an adult. If they are not currently communicative in words of some form, imagine that changing. It may well. What will you feel if your child asks why you loved the imaginary, ‘fixed’ version more than the real thing? What if your kid turns to you, makes rare, unbroken eye contact, and asks why you hated them enough to try replacing them with a different person? Could you live with that?
I got my first good look at Atlanta taking the long way into Decatur, 75/85 to I-20, Moreland, and Dekalb through interesting parts of town. That was one of my worst days, but those roads are where my life happens, now. Downtown, as seen on a spring night from the window of a car around the cultural speed limit, looks like home. I see it at least once a week. I hate the way they light it up blue. The next time I make the trip home from Douglass, those insipid floodlights will be gone. They were always jarring.
The skyline was an unpleasant reminder of times I would rather forget, but it never ruined my night. They were distant. The radio, the cushy, leather seats, the engine’s hearty rumble, the beautiful tuba were more real. So was the rehearsal that prefaces the drive. I like musicians, especially tuba players, because no one cares what I am. The band has substance. The section is alive. The lights had ninety seconds. People who care more about what I do and choose to be than what I was born had two hours. These things were before blue, or any, light bulbs. The needs for community, expression run marrow deep in humankind. Bread and roses, people of goodwill, and implausible tuba sections will outlast the pathetic display. In the mean time, I am safe.
What really bothered me about the lights is that not everyone is. They represent marginalization on a long spectrum. At one end, in my life, the discomfort is an inaudible hiss if the radio is on. It usually is. At the other, there are murders and apologists. Between, there are dour group homes, people who are about to age out of public school without a clear next step, kids whose parents are trying to ‘recover’ them. I spoke to one such mother. in April. She wanted to know how I got well. I said I was never sick, suggested that it was possible her son would grow up to feel the same way. The lights represent a narrative that we are suffering, waiting at the doorway of personhood for someone to let us in. It is a compelling story, wise researchers and brave, devoted relatives saving the helpless and ill.
Inclusion is an inherently harder sell. There are no heroes, just people quietly making room. The medical model is the stuff of bestsellers. The social model is the lady down the street hiring a guy with an intellectual disability to stock shelves in her store. The lights on I-20, the DSM V controversy, and articles like this remind me that society is wrestling with the question of normalcy: what does it mean to be sick vs. well, broken vs. whole, productive vs. useless? I presume competence. Anything else leaves precious human potential untapped. I am not going to argue with someone who feels healthy, whole, content as they are. I am not going to decide what kinds of people to exclude from the human community. I do not presume to be wise enough to know what innate ways of being should be cured. I know I want mine left alone. Blue lights were a reminder that not everyone agrees. There are people who think I, by definition, cannot answer the question.
These individuals annoy me, but there is nothing they can do to me. My competence at things society values, relatively good executive functioning, car title, driver’s license, bank account, voter registration, friends, contacts, and acquaintances cement my status as someone who can decide things. No one is going to do anything to me. I had to earn acknowledgement as fully human, but I got it. Were it otherwise, I doubt the lights would have been mildly unpleasant. They might have been frightening.
April is Autism Awareness Month. Autistics are trying to reclaim it because making it go away seems impossible at this point. If you care about why April is contentious and we get angry with you sometimes, this is a great month to learn about ableism and good vs. bad awareness.
Ableism is real. Ignoring it makes you part of the problem, the inert mass of apathetic people who slow down structural change that would help your children. It has almost certainly entered your home. It is like a termite infestation in that it can go unnoticed until the damage wrecks havoc on family life. Like a termite infestation, there are things you can do about it. The faster you act, the better. Ignoring it maximizes the harm. Spotting it is the first thing to learn.
Ableism is an oppression. Oppressions are systematic disadvantages attached to certain identities. Ableism is the one connected to disability. It has some fundamental assumptions that usually look something like this:
If you are not familiar with the dangers of assumptions, click here. You will see these assumptions throughout April awareness events. When you see people talking or writing about autism and none of them are autistic, you have seen ableism. When you see us described, across the board, as tragedies or victims, it reared its ugly head. I encourage you to play bingo with this list for a month, especially with yourself. This is not to say that you should stop recognizing your child’s disability. Deal with your child with all their strengths and weaknesses, including those associated with their disability, in mind. When you catch yourself being ableist, apologize. Rethink your assumptions. Try to mitigate the damage. Make it right, especially when you accidentally hurt your child. Avoiding ableism teaches your child to feel entitled to their basic, human rights. It helps them grow up with self-esteem. It lays a strong foundation for your efforts to teach self-advocacy. Recognizing one’s prejudice is difficult. So is much of child-rearing. This is one more task to undertake out of parental love.
*Not everyone wants to educate you. I do but have a student’s temporal limits. Google the models of disability yourself so that I have time to handle more complex things.
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 dragged myself out of bed, got presentable this morning. In the student center, I remembered that this day merited good clothes. Before I got coffee, I walked back to my room to exchange a venerable t-shirt for something I would wear to class or church. The boy was coming. Ibuprofen had no effect on my headache. I had hit a level of exhaustion irreparable by caffeine.* I did my best to ignore it. Come on, I thought. This is important. An autistic kid was coming to meet me. I was more tense and excited than when President Obama came to town. His mother said I was one of the first adults on the spectrum he would encounter. I hoped I would live up to his expectations.
He had gotten into the dining hall’s brownies and soda. He was more interested in running than anything else. I enjoy children but would write spending time with them off as luxury without a sense of ‘should.’ I feel obliged to protect them as much as possible from the lack-of-childhood I had. They will not grow up feeling like lone freaks. If they want to find the community, they will have help. Someone will be there to warn them about Wrong Planet. If they need advice, someone will try.
This goes back to the larger ‘should’ of visibility. This is why I always meet with parents, join panels, show up when someone asks. For me, being openly autistic was relatively low-risk. Coming out is a ‘should’ for everyone who can. Otherwise, how will these children, and their parents, find us? Real names are best. They show courage, link our stories to real lives, and make it hard for people to hang on to their prejudice in light of revelations about members of their own communities. Such openness is ideal, but making noise under any handle helps. It lets us find each other, build institutions. It challenges the prevailing narrative of who we are. Autistic people should be seen, heard, present to the young. We should craft a better story of ourselves and smooth the road.
*For reasons that cannot be discussed out of respect for others’ privacy, sleep has not been routine this month.
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.
As soon as the holiday passes and offices reopen, an epic struggle with the University of Chicago phone relay will resume. I want to know more about how I was diagnosed. I want to see the notes my parents never did. Finding who to call and getting through is cumbersome as always, but something is worse than the standard difficulties of dealing with large institutions this time. They want a witness signature to release information related to disability or mental illness. This, explained with a neat double asterisk, is separate from the guardian signature blank on the form. Treating me as incompetent solely on the basis of disability is legally questionable, but lawyers cost. After two weeks of calls, the single helpful, well-mannered secretary, whose accent says she was born down south, let me know that I wanted hospital’s Psychology Department, not Medical Records.
That has me concerned. Most people in ‘helping’ fields are nuisances if they know my disability label, but mental health types are a special brand of nightmare. I have little respect for people who hate everyone on the opposite end of their axis of oppression, but I almost make an exception here. One in ten is good. The other nine are a plague that ranges in virulence from mild othering to open prejudice. Catherine Lord had a hand in my diagnosis. I will argue with the nine, not the one. The presumption will be that autistics, myself included, cannot handle our affairs. I will advocate for myself. I will make it easiest for them to give me what I want. I will have my records. There will be no witness signature. As I prepare for round two of a long, unpleasant process, something has occurred to me:
I did not need a witness at the car dealership. I had an easier, less demeaning time buying over two tons of potential death than getting medical records. Renewing my license is similarly easy. So is course registration. No one is going to question my capacity to make decisions when I take out law school loans. The commonality is that all of these things could hurt me more than semi-legible photocopies. Unless there are surprises in those files, the conclusion is public knowledge. Even if I cared about the secrecy of the contents, they are safer than a car. Mainstream society rarely bothers me. I fend for myself without asking more of it than others do. My abilities at least factor in how it treats me. My problem with it is its tendency to marginalize those who need more. However, most people in helping professions, especially mental health, are different. They call autistics black and white thinkers without recognizing their own absolutes of normality and pathology. To whoever designed the form, and many whose patients use it, competence and incapacity are stark categories. One label is enough to push me over the line.