What We’ve Lost, or, What We Know (Autistic Pride Day 2020)

I. The Immutable Fire of Grief

We have always grown out of what others tried to define us as. We started writing our own stories more prominently in the 1990s. We always wanted our own narratives. A lot of that is lost: old listservs and expired blog domain names, and who got left out in the prominent record of our “short” history, and who was included. Sometimes we try to recollect it.

Other things we lost: stories, people, community members. Some recently, some to obscurity, some over a decade ago, many to direct and indirect violence. And so those of us who live have always been the immutable fire of grief, leaping in flames. But before the renewal of the forest fireweed, there’s us, floating down through the air as smoked out ash.

Whether it is the police targeting a Black autistic person or the school to prison pipeline, trans autistic people being denied gender affirming care, being abused at home or a victim of filicide, subjected to compliance-training behavior therapies like ABA, workplace discrimination, or a combination… Or maybe it’s something else, and – and – and…

II. Ash and Candles in the Dark

There is pain and beauty and darkness. I’ve said it before, and I’ll say it again:

I see beauty and pain and candles lit against the darkness as we mourn and try in vain to collect our emotions. I see the darkness pressing against the community… [but] I watch a community in pain sometimes come together in the most poignant of ways.

Ash slips through cracks and fingers so easily. Many of the people we’ve lost we’ll never know. In the cases of the people we did know, sometimes it still wasn’t enough. Though I burned myself out at least two years ago and haven’t really been as present since, I am not suggesting we give up. Rather, acknowledging the trauma weaves a stronger community.

Pride and acceptance aren’t the only pillars of the autistic and neurodiversity community – or any community. There’s the history and what came before, to remember, honor where proper, and learn from. There’s the coping and community support. There’s the fighting with steep odds and the resting, and the myriad contributions to a community’s culture.

There’s also being alive, woven into the community tapestry by sheer existence. Because what is a community without its people?

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Hi all! As you may or may not know, I’m also a social media volunteer for the Autistic Women & Nonbinary Network (AWN Network). One of the community resources we make available is the Fund for Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment (or the Autistic People of Color’s Fund for short). The fund exists to provide direct, individual financial aid to autistic people of color for a variety of needs […]

[…] If you’re able and would like to contribute in a way that will support the quality of life of autistic people materially and very, very immediately, the link for more information and how to donate is here.

[Click the “via” link to go to full post.]

via Donation request–Autistic People of Color’s Fund — Chavisory’s Notebook

Letters sent re: #StopTheShock #WeAreStillWaiting

Today (4/24/19), is the day of action about the GED shock device used on disabled ‘students’ at the Judge Rotenberg Center in MA. Learn more here.

CW torture, electric skin shock

 

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To the FDA

CDRH-Center for Devices and Radiological Health
Food and Drug Administration
10903 New Hampshire Avenue
Silver Spring, MD 20993

1 (800) 638-2041

DICE@fda.hhs.gov

To whom it may concern at the FDA,

My name is Kit Mead, and I am from Baltimore, MD. I wanted to ask about the proposed ban of the GED device used at the Judge Rotenberg Center in Canton, MA, which uses electric skin shock as an aversive on its disabled ‘students’.

The FDA originally concluded a ban should take place in 2014. Since then, ‘students’ continue to be shocked. I urge the FDA to ban the GED shock devices used at the Judge Rotenberg Center.

As a disabled disability advocate, I was relieved to hear in December that the FDA plans to finalize the ban. But people with disabilities are still being tortured at the Judge Rotenberg Center, and time is of the essence – not one more person should get hurt. When will we see the regulation finalized?

Thank you for taking the time to read and respond to my email. We are still waiting for the ban to be enacted and hope to see it finalized immediately.

Sincerely,

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To Congresspeople

[Insert greeting here]

I wanted to write to let you know about a legal form of torture for autistic and other disabled people in the US, the Judge Rotenberg Center in Massachusetts. It uses a GED electric skin shock device on its ‘students,’ who live in reality in an institution.

In 2014, the FDA held hearings on whether to ban the use of the GED/electric skin shock as an aversive. They concluded such devices should be banned. In 2018, the the FDA finally released a Unified Agenda stating they were working to finalize the rule that would ban the GED used at the Judge Rotenberg Center.

The FDA has continually said that they are working on finalizing the rule, but we need Congress to hold them accountable. You can find more information and a sample letter to the FDA at autisticadvocacy.org/fdaletter. Thank you for taking the time to read and respond to my email. I depend on you to stand up for people with disabilities – can I count on you to write to the FDA?

Sincerely,

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I sent my letters to Congresspeople using Resistbot. (Resistbot also has an ‘editor’ function where you can submit a letter to the editor of your local paper, which I did).  I used my own words and some phrasing from ASAN templates. Learn more about the issue and what you can do here.

autism acceptance month version… ??

[Note: This is prose-poetry.]

I’m not going to lie when I say that I don’t know what to say, that I’ve recycled all my words  for autism acceptance and neurodiversity until I have nearly nothing left to say

and I know remixing scripts is very autistic,  echolalia and pallilalia and all the little things we do when we say anything, whether spoken or movement or using AAC devices.

Maybe I know. Maybe I know. Maybe I know there’s always something left to say, always an argument worth having, a blog post worth writing, an action worth taking.

Maybe I have my own reasons for not always having something to say, having that argument, writing that blog post, taking that action.

I have always loved this community for its rich complexity, despite all its all flaws and imperfections, its exclusions and inclusions and its failures to do justice by swaths of us, but sometimes its championing of all of us and trying to do better.

For all the pride that lights up screens across the globe. How we have worked to take what wasn’t for us and tried to make it for all of us.

I have, often, nearly nothing left to say.  Maybe I know. Maybe I know. Maybe I know that I don’t always have something to say, have to have that argument, write that blog post, take that action. I know I have always loved this community and sometimes that means

I have

nearly nothing left to say.

bendy joints, fragile life, and how the denial of effective care can kill us

Disabled people often rely on an intricate but fragile network of supports, services, and medical care to survive. Sometimes the fabric of supports and lifesaving medical care bends like my joints, stretching far like the faulty collagen in my body. Sometimes it does not bend, but tears, severing the thread of life.

Carrie Ann Lucas, disabled attorney, parent, and pioneering activist, was 47 years old. She had a rare form of muscular dystrophy, but she died of complications from a treatable condition because UnitedHealthCare refused to authorize a medication that she needed. I never knew her, but I knew of and valued her work.

And it is not just Carrie Ann Lucas.  I am too tired to find all the names, all the capricious insurance denials, all the bias in medical professions. It is all kinds of people, disabled people of all stripes. I wish I knew more of their names and stories. If this was Leverage, there would be people tackling the holes Robin Hood style, case by case. This is not Leverage. We have direct action and policy still. We should use it:

There is an institutional bias in our system of supports and services. Sometimes that kills people. There is a long waitlist for SSDI appeals. The death toll is mounting. People get taken off their benefits without warning. Sometimes that kills people. Insurance companies often won’t pay for the most effective treatment. Sometimes that kills people, like Carrie Ann Lucas. 

I am disabled, low-income, and on state Medicaid. I am struggling to get benefits. Republicans keep trying to kill the Affordable Care Act. I am mere peoples’ generosity from being forced to give up my cat, move in with relatives, and suffer cascading mental health crises that could end badly. I will be 26 soon. Sometimes I wonder if or when my friends and I will die early, and within what scenario.

Comments to HHS on possibly altering HIPAA mental health privacy rules

The Department of Health and Human Services (HHS)’s Office for Civil Rights (OCR) put out a “Request for Information” on possibly changing HIPAA privacy rules for people with “serious mental illness” and substance use disorders. The docket can be found here. The comment period is now closed.

The changes they are thinking about – this is not a proposed rule yet, but concerning – are encouraging doctors, to share more health information in “emergencies” and expanding caregiver/other involvement in people’s treatment.

I think this is bad for many reasons, which I hope to have indicated in my comments, though I broke them down a bit to be more convincing. I addressed “b. Promoting Parental and Caregiver Involvement and Addressing the Opioid Crisis and Serious Mental Illness.” 

.     .     .

I am an autistic, LGBTQ+ person with chronic pain and mental health disabilities (referred to as SMI in this RFI). I want to focus on section b) Promoting Parental and Caregiver Involvement and Addressing the Opioid Crisis and Serious Mental Illness.

My abuser, my father, may not have been the source of my bipolar disorder, but he was assuredly the source of my Complex Post-Traumatic Stress Disorder (C-PTSD) and generalized anxiety. The last thing I’d want would be for someone I’ve tried to shut out of my life in every way possible to be able to access my protected mental health records.

For some people, they have not yet been able to escape the source of their trauma – their abusers. These abusers would have far easier access to their victims’ protected health information (PHI) if OCR decides to move forward with this rule.

The opioid issue is a serious one, but has significant nuance to it. And substance abuse certainly co-occurs alongside mental health concerns at high rates. But the solution is not to provide greater access to PHI to family members, caregivers, and a nebulous, unspecified “others” category – which could mean anyone a mental health professional deems appropriate.

So my response is a resounding “no.” There are already HIPAA exceptions in place. We may be still reliant on abusers for food or money, and potentially granting them access to our PHI will not help us seek or engage in treatment. It would be active sabotage. People will lose trust with their doctors and other mental health professionals. We may become afraid of attempts to coerce us into institutionalization.

And as someone who grew up the victim of child abuse, I don’t believe all families protect and care for minors well. I don’t think parents need easier access to their children’s health information, which they already have a great deal of access to. This could disproportionately impact marginalized youth, such as LGBTQ+ kids.

Privacy does not evaporate when you are mentally ill or have a substance abuse disorder; it becomes all the more important, and I urge OCR to keep this in mind.

.    .    .

Views expressed above are my own. 

On (not) writing (every day)

Funnily enough, Stephen King and I aren’t the same person. Though he too experiences chronic pain as the result of being struck by a car in 1999, his advice to write every day doesn’t work for me. Much of my time is spent troubleshooting in an effort to barely survive.

I am autistic, queer, chronically ill/in pain, investigating a possible minor and persisting TBI from an injury in 2016, and I have debilitating mental health disabilities. I live largely in poverty and unable to work the amount of hours I need – relying on friends and family more often than I’d like, struggling to get benefits.

I did, in fact, win November’s NaNoWriMo 2018 with 56k words. I did write the majority of those days. The toll was a lot, and I’m still recovering, hoping to try and make edits to a novel and continue the draft of another.  I could make points about how it is possible for both of the facts – struggling to survive and winning NaNo – to exist within one person’s experiences… 

…That NaNoWriMo fills me with joy and energy, that working on my novels is easier than other tasks because I actually find enjoyment in it instead of the monotonous echoes in my brain telling me horrible things and immobilizing me entirely. That my creative writing and other tasks require two totally different types of energy.

But mostly, I write those words, particularly the ones about Stephen King, as a head-off to the inevitable dredging up of examples of people like me who accomplish the sort of things other people think I can and should be accomplishing. (Also, Stephen King is an award-winning, prolific, author, and I am not). Many people cannot write every day, even what you think is easy, ‘a couple of sentences’ even or ‘at your own pace.’ 

Some days, for some of us, we cannot even begin to open a notebook or computer document. We are consumed by our jobs, our family, our poverty, our illnesses and conditions, our stressors great and small. Also, maybe there are days we could force ourselves to write anyway, but at what cost? At what point should we sacrifice tomorrow, or maybe even the next week or month, for the sake of writing every day?

Certainly, there are a variety of writing communities, each with their own guidelines and ideas, and hopefully every writer can find a home somewhere. But I know I and many others will not be able to find homes in places that require us to ‘write every day.’

Some reading on writing communities and disability

• Are Writing Communities a ‘Game for the Healthy?’
• What Does It Mean to Be A Disabled Writer?
• Writing Culture Has An Ableism Problem

 

Reckoning with less than historical eugenics and present politics

Eugenics, Kavanaugh, and Trump administration politics

North Carolina historical marker. “Eugenics Board: state action led to the sterilization by choice or coercion of over 7600 people, 1933-1973. Met after 1939 one block E.”

I was with a friend in North Carolina as the confirmation of Brett Kavanaugh unfolded, and stopped by the NC Eugenics Board historical marker completely by accident. I looked up at it in reverence to the victims and cold anger at the utter denial of bodily autonomy and the ableism and the classism and the racism and the other discrimination.

I look solemn in another picture I took with me in it for a reason. Because coercion and involuntary sterilizations of disabled people, people of color, poor unwed mothers, etc. were the norm protected by state laws and haven’t been fully taken off the books in some states. All states have a reckoning with eugenics in some form. Some more than others, some still more than others. It was not an isolated movement. It was not a one-off deal, a bunch of supporting scientists with no following.

I got close and looked at it. And even if I touched it, maybe, I wouldn’t get as close to the memory of eugenics as still-living survivors of the 20th century wave of sterilization and the sometimes still-standing institutions. But in other ways, eugenics is alive and well and we have a present-day set of scenarios unfolding. In May 2017, I talked about being against eugenics, and for a future that includes disabled people for Blogging Against Disablism Day:

And Jones is right. Eugenics ideology is rampant, but I have not yet seen any political figures actually proclaiming themselves a eugenicist. Eugenics has a bad, discredited name to it now, and it’s more persuasive to masquerade under the guise of “Make America Great Again” then outright call oneself a eugenicist. It’s more convincing to cloak eugenicist views in words and actions that make people feel proud, to appeal to people using discriminatory views without ever saying one is endorsing eugenics.

I didn’t even get into Brett Kavanaugh-kind of ideas at that juncture. I hadn’t gotten there yet, because the sheer amount is massive and a lot to touch on in one post. I have a well-read interest in the history and condemnation of eugenics, now and then: I know what it does. What it can do beyond what it is doing now.  I am scared by Brett Kavanaugh’s total disregard for disabled people’s – and everyone’s – bodily autonomy. I am scared by the people who so easily think like he does. And so much more.

I am scared of an ultra-right wing Supreme Court. Eugenic sterilization laws were laws. They were legal. They were upheld by the Supreme Court in an 8-1 ruling. We need to be worried about what becomes legal. But I am also furious, and not going to stop screaming about eugenics, now and then, and justice and equity and rights from the rooftops, and so much more. It does matter: here’s a list of local, state, national, and international progressive wins since the election.

If you can, you should, too. We cannot write eugenics off to the past when the 20th century specter is looming large – and has already arrived in some ways. And eugenics doesn’t always look like the horrors of Nazi Germany the American 20th century movement inspired, though sometimes it can. (It is not always easy to recognize eugenics when it is cloaked under so many different names and language. In a future post, I will attempt to gather together some signs.)

If you have the ability, when you can, name eugenics. Call things eugenics when they are, including political actions and attempted laws and repeals of laws. Take care of yourself, but if you are in a position to do those things, anything less is a disgrace to allow it to slip into tacit acceptance into most people’s minds. To have it not be an ideology and movement and pseudoscience that is fought against is a disgrace to past and present survivors of eugenics.

 

Less socially interested people are still full human beings

The recent study “Being vs. Appearing Socially Uninterested: Challenging Assumptions about Social Motivation in Autism,” and the resulting New York Times article, got me thinking about the value we place on socializing. The article does a good job, I think, on telling non-autistic audiences that we are just as human as they are. That autistic people need to be met halfway just like anyone else. That our body language and communication and social interests displaying differently than others does not mean it is lesser.

So I don’t really have a bone to pick with that. Mostly, I just got to thinking about the immense value we place on socializing in the first place. There is, of course, an expectation that people should engage in socialization. And to an extent I think most or all people want and need it. But sometimes I remember that I was fine in elementary school before I acquired any friends I had frequent contact with, and I was really happy by myself. All the time. Reading books, writing stories, playing outside in make-believe, playing with my beanie babies. I wasn’t actually particularly wrapped up in social relationships until the third grade. Even then, it was the teacher who decided I needed company and sent another third-grader over.

And even now, I definitely have more friends than I used to. But I am often only interested in socializing within a certain circle of people. Small talk is the bane of my existence. I don’t really engage in lengthy conversations with acquaintances, even. I crave social interaction – but I mostly want to socialize with the people I feel most comfortable with. 

I know socialization helps people relate to and care about each other, most likely. I find it easy to still care about someone even if we don’t talk much. That doesn’t make me unique or better, it’s just how I work. I do understand there is value in socialization as a tool for compassion. But just because someone really isn’t interested in socializing doesn’t mean a person is bad. Less socially interested people have equal value to more socially interested people. We have the ability to be compassionate. We are still full human beings.

Julia has a home on Sesame Street, a world that’s always tried to include everyone

Guest Blog Post by Sara Liss

[partial view of Sara, who has dark hair in pigtails and is wearing a dark pink shirt, smiling. She sits with a Julia doll, holding onto the doll’s hand. The Julia doll has bright orange hair in pigtails and green eyes, looks happy, and is wearing a pink shirt.]

I wish that Julia the Muppet from Sesame Street had existed when I was a toddler and first learning (not very successfully) to interact with other kids. I was desperate to play with someone other than my baby sister, her baby playmates, and our family friends. I didn’t know how to connect with the other kids my age, and most of them preferred for me to stay away. One or two of the girls at my preschool either liked me or took pity on me, on their own or with adult encouragement, and were my sometimes-playmates. I don’t think my pre-school teachers assigned them to me as playmates, the way my teachers did every year from pre-K to 4th grade.

I can say, though, that the only social interaction was the time my not-quite-friend Melissa invited me to play with her outside and then told off another girl who didn’t want Melissa to play with me. I guard that memory carefully, clinging to it as I try to forget the times I stood at the play kitchen or sand table minutes after the other girls had used them, trying to pretend I wasn’t alone.

I can remember most of the Sesame Street episodes and skits broadcast between 1989 and 2000. I’m 29 years old and my youngest sibling is 23, and my brother’s occupational therapist and later babysitter had a burning hatred of Barney, which means I know the songs from that era word-for-word almost two decades later. Back then, there were no openly autistic faces to us to latch on to as role models.

Sesame Street, so progressive that it moved its new programming to HBO to keep social conservatives from trying to kill the show entirely, was no stranger to disability even then. Linda, a Deaf woman who debuted on the show in 1973, already teaching children how to sing in ASL back in 1976. Tarah, who had osteogenesis imperfecta, was showing off her skills as a wheelchair ballerina in 1993. But there still wasn’t anyone on Sesame Street with disabilities that also affected their minds.

(In the world of disability inclusion, disability is always physical first and mental/cognitive second, unless there’s been another mass shooting and we’re desperate to find something besides a gun to blame.).

When I was a child, Sesame Street coded characters as autistic–the Count, of course, and also sometimes Bert. Most autistic kids identified with the Count. (Personally, I found him terrifying, and may or may not have run away from him and his scary mountain and scary bats at least once. He wasn’t quite as scary as Ursula from The Little Mermaid, though, so I still have “The Lambaba” word-perfect two decades later.)

I myself adored Bert, and, according to family lore, actually teethed on his nose. Most of all, what resounded with me was his bemusement at Ernie’s version of logic, which made literal sense and was reasonable from Ernie’s point of view, but always led him to the wrong conclusion. (The cookies in bed sketch, https://www.youtube.com/watch?v=YpozspIMH9E, is a classic example.)

I had another kind of kinship with Kermit the Frog, who wasn’t a resident of Sesame Street but appeared in enough skits as a reporter covering Fairy Tale News for me to claim him for this essay. I was drawn to his high anxiety levels, his endless attempts to get everyone to just *listen to him* to get everything in order for once in their lives, and the way heightened emotions stole his words and left him with screaming, flailing, and flapping as his only way to communicate.

But Kermit was never coded as autistic, not as far as I can tell. He was rather a giant ball of anxiety, almost certainly depressed, in an on-and-off relationship with an amazing woman who could have been a great partner for literally anyone else. [This is not an essay on the many, many wonders of Miss Piggy. Nor is it an essay on how the stereotype of a hen-picked husband needs to be rended from tip to toe and thrown to the piranhas. I can write that essay some other time, if anyone is interested, but I’m currently wearing my Joyful Autistic hat, and the Raging Feminist one will have to wait.]

Julia is different. Julia is openly autistic and doesn’t apologize for it. She has a home on Sesame Street and doesn’t need to be “fixed” to keep it. She’s not a single obsession, a savant, or a machine who needs to be programmed with the “right” words or social skills.

I look at Julia and see an autistic girl–an actual GIRL–who STIMS! and who is EMOTIONAL, so much so that her body can’t contain it! who USES HER BODY TO COMMUNICATE HER FEELINGS! She doesn’t need speech to express herself, and can say more with her body than words can contain, even when the NTs foreign to her world don’t understand what she means. She’s silly and goofy and strange and people LIKE HER FOR IT.

My new friend Julia has *real* friends, friends who didn’t need anyone to tell them that Julia was lonely because she was different and needed a special buddy to help her feel the same as everyone else.

Her friends think of her as an equal, not as a Special Task the grown-ups trust them with. Her friends don’t exploit her oddities for their own amusement or make fun of her in ways they know she can’t understand. They don’t leave her in favor of her “normal” friends when she breaks social taboos, and don’t leave her when she can’t answer their questions about who she is, or how she thinks, or why she can’t be like everybody else no matter how hard she tries. Her friends are the non-disabled peers I loved and followed as a child but could never seem to keep, the people I broke by getting too close when I was hopelessly broken.

It wasn’t until my second year of college that I found friends who embraced me and the autistic parts of my soul but weren’t autistic themselves. Calling them NT is probably a stretch. I’m pretty sure there’s *something* ND about people who creep along public streets in broad daylight pretending to be a raptor, complete with sound effects, and completely sober; and all of us had trouble passing in so-called normal culture.

They were and are more like me than any non-autistic person than I’d ever known. They love my flappy rants about administrative law at New Yorker speed, the same way I love their shared horror of the Twilight movies. We’re entertained, sometimes enraptured, frequently clueless, and sooner or later, baffled at why we’re still talking. They’ll probably never know why I’m so obsessed with the Chevron doctrine, and I will never understand what possessed them to go to the midnight release of the first Twilight movie. And that’s okay. We’re oddballs, but that’s a feature, not a bug.

I can’t be certain, I don’t think I’d have spent 20 years waiting to find friends who could love my autistic soul but not have their own to match if I’d met Julia the same day I met Big Bird, Mr. Snuffleupagus, and Elmo. I don’t think I’d have gone 29 years without being diagnosed, making 3 separate trips to Albany to be evaluated just so I could prove a point. I don’t think my dad would shy away from me every time I talk about being autistic because he’d thought my mind was fine and never considered my social issues might be so “bad” I needed a disorder to describe them. And I don’t think my first female fictional friend would have been Baby Bop just because she was a girl, and there weren’t any girls on Sesame Street.

Sesame Workshop is finally teaching kids that autistic people are people worth the same as anyone else, even if their minds aren’t fine. Her Muppet friends Elmo and Abby know that she’s their equal. She can love and be loved without trying to make her life a game of pretend, a game there’s no way for her to win. She speaks with her loud hands and loud arms and loud body. She speaks in the wordless sounds she makes and the rest of the world tries to interpret, sometimes correctly, sometimes wrongly, and sometimes looking for meaning that words can’t express at all.

There’s a lot of Julia in me. I see her and I want to keep her safe from a world that sees difference and tries to fix it, even when there’s nothing to be fixed. I want to protect her from a world that demands conformity at any price, and punishes us when hurting ourselves is the only way to comply.

At the same time, I look at Julia and see a girl like me in the safest place I’ve ever known, who sees and does things differently and who isn’t scolded for it. I see adults who see her as a person, a *disabled* person, autistic through and through, and still knows she exists for her own sake. I see a fictional world that’s taught tens of millions of young children over generations numbers and letters and skipping rhymes and phrases like “please” and “thank you.” I see a powerful force in children’s education telling Americans everywhere to welcome me as I am. I see a world that’s always tried to include everyone, desperately trying to teach us to better people, and see that in this better world, there’s a place for me.

I wish that when I was little, I’d seen a girl like Julia on Sesame Street, and seen Sesame Street embrace her. I’m not a child anymore, but I’m so, so glad that she’s here now, and here for me.