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

Guest Blog Post by Sara Liss

Sara with Julia Muppet

[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.

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Autistic pride is my rebellion (or, why I can’t celebrate Father’s Day)

Yesterday was Father’s Day, which I cannot celebrate. Today is Autistic Pride Day and June is LGBTQ+ Pride Month, which I embrace. It was also the Baltimore Pride Festival yesterday. I put on a Noncompliance is a Social Skill shirt and made an “Autistic Disabled LGBTQ+ Pride” sign, and trekked off. For some, those celebrations aren’t mutually exclusive, but for me, Father’s Day is not one I can celebrate with the others.

“it was said they loved the stars”

It was said they loved the stars:

Enough to carry stardust ever so gently in
pockets lined with meteorite shards, wrapped
in wax paper for fire-starting, a return to origins.

I also wore a B’tzelem Elohim genderqueer Star of David patch. I am a genderqueer and nonbinary Jew-in-progress. B’tzelem Elohim. [Created] in the image of G-d. Not a mistake. Never was, never will be. Some in my life have said otherwise, including my father. I am tired of keeping it a secret online, of indicating the existence of a trauma history but being afraid of saying why.

Enough to try and forgive the father who left burn
marks in the wake of their scarring scorching (re)actions
Who sharply laid blame at their feet and swore
on the flames consuming all the mistakes made

Some in my life have said I’m a mistake and worthless, including the reason I cannot celebrate Father’s Day. I did try to work it out and possibly forgive him, but he never was sorry. I was never the child he wanted. I was never “normal.”

I had a hard time making friends. I said things that didn’t match my tone. I took things literally. I went on long, excited infodumps about extremely passionate interests of mine. I had meltdowns. I had shutdowns. I was fidgety and hyperactive. I had attention issues and problems at school. I had a hard time with conventional communication and reading body language/tone. And over time, I became insolent, aggressive, and volatile, following years of his verbal and emotional abuse.

My disability traits don’t actually matter here, because I never deserved it. Sometimes, that’s hard to remember, because all of that told me I don’t have inherent value as a person. And other things exacerbated his treatment of me, like the occasions he had too much to drink. Through the years, I blocked it out. It floated back in late teenage years, when it was safer to do so. So I tried talking about it: “When you do X, I feel Y.” Then: “If you don’t stop yelling at me, I will end my visit and go home.” I concluded that nothing I did would make that happen. After college, I finally gathered up my nerve.

And also enough to face their father and walk away from the
words and epithets of (dis)grace and turn their face to
G-d instead, found among the shul’s engraved Stars of David
And in the Etz Chayim prayer’s high note of A-do-nai,
And in notes before and after, calling upwards

Enough to embrace what is cold and distant to our eyes,
points in space where no one could ever reach, the fiery fusion
of atoms we can’t get get close to.

During college and since then, I’ve relied on a multitude of things to get me through. I found pride in being disabled and autistic. I found words for my gender identity. I made and still have friends. I stopped talking to my father. I adopted a cat. I found a psychiatrist who treats me like a person, and believes me about things. I began converting to Judaism, where I am finding coping methods in the ritual and prayer.

And I will never be able to celebrate Father’s Day. I hope everyone knows that it’s okay if they can’t, either. Or if they have to pretend so nothing bad happens. Or if they just have complicated feelings. I hope you can celebrate whatever you need to, commit whatever acts of rebellion you need to.

Autistic pride is my rebellion; the personal and the political. Not just against cure culture and ableism, but everything he disparaged. Autistic pride says my life is mine, that there are so many things he never took from me. That if I have pride in being autistic, disabled, and LGBTQ+, maybe I can have pride in the rest of myself. I try to celebrate myself, in the hopes that I will eventually feel like enough. I try to celebrate myself, because there are so many things I am and so many things I love.

It was said they loved the stars
It was said they loved the stars, and it was enough.

A documentary about “scary” kids scares me on behalf of the kids.

There’s a new documentary out that I don’t think I’m going to watch. It’s titled “A Dangerous Son.” It’s an HBO documentary that tells “a story about families with children who have psychiatric disorders that lead to violent behavior.” Mostly because I have already read all of those stories. Again. And again. And again.  

And I have found them incredibly disturbing each time – but on behalf of the children who are being written off and exploited. Especially because, as Mel Baggs pointed out in a comment: Across violent and abusive sets of environments, we – the kids – are the only ones seen as having a violence problem.

And those environments are so very often the context for “violent outbursts.” Like mine.

People considered sending me to a school for kids with behavioral problems, after therapy and medication didn’t work to quell my outbursts. Because they were going after the wrong thing: It must, the psychiatrist said, be Oppositional Defiant Disorder and anxiety. Not trauma. Not communication barriers. Not what was modeled as social behavior. Just that I was a rebellious, insolent, violent kid.

A throw-away diagnosis. A throw-away kid.

And I already know the kinds of things they’re going to talk about in the documentary: Desperate, at our wit’s end, we’re scared of our so, so very violent and mentally ill kid. But we’re out of treatment options. The psychiatric hospital is out of beds.

.  .  .

It’s possible to advocate for and with children who are struggling and vulnerable with, as I pointed out in 2016, some level of dignity. According to NPR, the director of the film “wanted to show how challenging this situation is both for the child and the family. Often, people assume a child’s behavior is a type of parental failure.” Further, director Liz Garbus told NPR, “Destigmatizing families like Stacy’s who are going through this and seeing how hard they’re trying is really important.”

Well, yes, in part it often is a parental failure, along with the psychiatric industry and other adults in the children’s lives. Whether it is directly perpetuating abuse and violence, enabling it, or failing to recognize the abuse and trauma, it is a failure of adults in their lives. You know what else is a parental and societal failure? Filming kids at their most vulnerable as a way to showcase how “challenging” it is.

You know what’s really important?

Not, as the NAMI spokesperson in the NPR article implies, framing it as a choice between psychiatric beds and intractable violence at home. Because it does not surprise me and my friends that one of the kids’ behavior “didn’t improve” when he got home from inpatient. Because we have witnessed the violence and hostility of inpatient institutions.

Maybe a focus on trauma-informed care and removing sources of abuse and violence in the kid’s life. Maybe that’s also important. Maybe it’s important to fight for community-based services and training providers need instead of more psych beds.

It’s possible to advocate for struggling children with dignity.

.  .  .

Savannah Logsdon-Breakstone wrote an article on their blog following Newtown and a particularly bad Gawker article written by a parent about her 13-year-old son called “I am Adam Lanza’s Mother.” In it, Savannah describes being one of the “scary kids,” the right to privacy, and the dangerous assumptions and dismissals people make. Every word of the piece is important, but here is a snippet:

My mother doesn’t regret keeping it private, between her and her private journal or her therapist. Today she was at  a consumer and family advisory for our behavioral health managed care organization (BHMCO). They read that gawker article, and my mother was appalled. She has scary stories about me, but the idea of sharing them in a way that associated them publicly with me was a horrifying violation of privacy and good sense to her. She was struck by the negativity of the piece, of the author. And she noticed how it relies on and perpetuates stigma, and jumps to conclusions.

Having been one of those scary kids is scary… What made it scary to have been one is what people assume based on it — and what they assume when you don’t disclose.

The author of the “I Am Adam Lanza’s Mother” piece is in the documentary.

.  .  .

And what if filmmakers had turned a camera on me capture my worst moments? Then what? Would anyone have seen the context? Would anyone have seen a vulnerable child? Would anyone have stopped to think about the young person whose future they’re so willing to damage? What this might do to them on every level of being?

No. They wouldn’t have, because it’s already happened, over and over again, to others. They chose to exploit. But they could have provided sensitivity and trauma-informed care to a young, struggling person instead.

However lost in life you may think we are: “None of us are lost causes.”

 

The NYT antidepressant article: what it does – and doesn’t – say

There’s a New York Times article on mental health – and reactions to it – making the rounds on my social media feeds. The article under debate is “Many People Taking Antidepressants Discover They Cannot Quit.” And the NYT has a less than stellar track record on mental health. They’ve run articles on whether we should construct a new wave of “modern asylums.” Based on people’s reactions, and the NYT track record, I mostly expected the antidepressants article to be shaming medication use. It wasn’t. It discussed antidepressant usage and prescribing habits. And as the title promises, the people who can’t go off them, due to extensive and protracted withdrawal symptoms.

It’s not necessarily well-written as a public health article. And it is not an article that is telling people to stop using their medications long-term. Yet the discussions I’m seeing are talking about med shaming and taking meds long-term. Which, if you feel like long-term medication is most beneficial to you, you have every right to it. At least some of that discussion, I think, is rooted in fear that the article will contribute to medication shaming. I do get that. I’m on meds, including an antidepressant. I like a couple of them. I don’t like it when people think I shouldn’t have access to them because they think all meds are the same or evil.

But the article is about effects of withdrawal when people try to go off of them. It is about people not knowing these risks beforehand to make an informed choice. It is about doctors not providing informed consent. My perspective is shaped by the fact that I had been medicated for a long time before I was able to assert more control. Not “taken medication,” but “medicated,” with little information on the drugs I was being told to take. I am now on two that I cannot taper off of right now, because I’ve been on meds for so long. I know; I’ve tried. So: informed consent is a thing that should exist.

The article discusses people being unable to get off medications, and the response I’m seeing is to talk about it being okay to take them long-term. But not everyone on antidepressants finds an adequately stabilizing one. Not everyone on antidepressants wants to be on them forever. People get to make choices about if what the medication is doing is worth it. If a person wants to go off of a medication, reassurance that it’s fine to be on it long-term is a response I do not see as helping.

So I find it disconcerting that people would turn the subject to the stigma of taking long-term medications here. We need to be talking about side effects. We need to be talking about withdrawal. We need research on effects – positive and negative – that can help guide informed consent and people’s medication choices. I do understand stigma and medication shaming exists. If people do that in response to this article, or anytime, it’s inappropriate. And I have been on the receiving end of medication shaming, too, and it’s demoralizing.

But I don’t think criticizing the article for what it doesn’t say – as a preemptive defense against med shaming – is useful. We should critique and criticize based on some of its actual flaws: it is written with, perhaps, some sensationalism. It lacked clarity at some points. It may deter some people from finding something that works for them. But it does not argue against people’s personal choices to stay on antidepressants long term.

Stephen Hawking also used AAC: notes on the disability discussion

Acknowledge Hawking’s AAC use – and also know and remember that everyone deserves access to communication supports.

Stephen Hawking, the disabled theoretical physicist and cosmologist with ALS, recently died at the age of 76. I love the stars and space: enough to embrace what is cold and distant to our eyes, the fiery fusion of star atoms we may never get close to. Sadly, this love has not allowed me understand theoretical physics, even in layman’s terms. 

But I’m disabled, too, so I understand parts of that bit. I can talk out loud, but not always. What I say may not always be what I mean. I try to write more than I talk. I can walk, but it’s often painful, and limited to half a mile at once. I don’t use AAC or a wheelchair full-time. My main advocacy has been with the autistic and I/DD community. My values are rooted in access for everyone: people who don’t have adequate communication supports, and people who use AAC, even if they didn’t turn out to be geniuses. 

So that’s where I’m coming from for the rest of the post. Okay? Okay. I have something to say about the disability community’s conversation on him. We’ve been fighting the erasure or denigration of his disability by non-disabled people, including the media.

(For those who missed it: there is a lot of “in spite of disability” and “free from his wheelchair” language when his disability status is discussed in the media. Hawking’s disability was an important part of who he was. He achieved all his work informed by his disability, not in spite of it. And death is not better for disabled people: support us in life, not laud our deaths.)

Which, yes, be angry about that! But many of discussions only note his power chair use. Which the erasure of his power chair is a problem. But I often do not see a similar emphasis on his AAC use and how that’s an equally valuable part of his disability experience. I want you to start valuing his AAC as much as I hear you talking about his power chair. I am not asking for you to prioritize him being an AAC user over that. I just want you to grant his use of AAC the same level of importance (Some of you are, and I see you! Thank you).

Hawking himself stated access to communication supports are critical to make available:

I want to use my high profile to raise awareness of issues around disability and communication. Recently, my communication system broke down for three days, and I was shocked by how powerless I felt. I want to speak up for people who live their whole lives in that state. My hope is that the kinds of technologies I have trialed and helped develop will become easily and cheaply available to all who need them. We need to make sure this technology becomes available to those who need it.

Hawking also freely acknowledged the significant privilege he had: “But I realize that I am very lucky, in many ways. My success in theoretical physics has ensured that I am supported to live a worthwhile life. It is very clear that the majority of people with disabilities in the world have an extremely difficult time with everyday survival.” 

Beyond Stephen Hawking, access to communication supports is a right, for everyone. 

So are things like presuming competence, which doesn’t mean “treat people like they’re not disabled,” but “treat them like a person with strengths and support needs.” As Julia Bascom wrote in 2014 about a thing that happens sometimes involving autistic children with high communication support needs:

Autistic child is presumed to be very significantly intellectually disabled. Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart…. The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say…

…These revelations, about presuming competence, human dignity, and the least dangerous assumption—they don’t apply only to kids who are secret geniuses. They apply to everyone. They are the most important for the kids who really do have intellectual disabilities, who really can’t read or use full sentences and who really do need extensive support.

Make sure you are acknowledging that Stephen Hawking used AAC as part of his disability experience. That disabled people who aren’t theoretical physicists use AAC, too. That disabled people who aren’t secret geniuses and don’t have adequate communication supports have things to say. The potential for, or existence of, “genius” and “gifts” is not why people have the right to communication supports. We all have decisions to make, along with needs and desires to express.

We all have something to say, no matter: our level of education and employment status, how much support we need to make decisions, if we rely on social safety nets or not, what disability we have and how it impacts us. We all have something to say, no matter what.

The shape(s) of narratives that spill and flow over neat lines and boxes

Resonance and representation in The Shape of Water

The Shape of Water (2017) and its relationship to disability narratives is undeniably complicated and at times flawed.

Some of us who identify with parts of the film and characters, have, as Emily points out on Twitter, problematic lives. My interpretation of problematic is operating outside accepted narratives (Emily may have a different definition; this is mine).

The Shape of Water follows Elisa Esposito, a nonspeaking woman living in 1962 Baltimore. While hearing, she uses American Sign Language (ASL) to communicate. Her friends are Giles (a gay artist) and Zelda (her Black coworker and sign interpreter). She works as a cleaning woman for a high-security government laboratory. There, she bonds with the facility’s newest “Asset,” an amphibious, humanoid creature. They fall in love. Elisa, Giles, and Zelda then work against the laboratory to return the “Amphibian Man” to the water and save his life.

There have been critiques about linking disability to otherness. But what happens when you’re different all your life, even if not identified as disabled?  Autistic writer and reviewer Sarah Kurchak pulls the following quote from the film’s director, Guillermo del Toro, in Vanity Fair: “monsters are evangelical creatures for me. When I was a kid, monsters made me feel that I could fit somewhere, even if it was… an imaginary place where the grotesque and the abnormal were celebrated and accepted.”

Further discussion of (in)humanity and monsters

There have been critiques about linking disability to monsters. So what happens when you’ve always felt at least slightly inhuman? Kurchak notes in the review at Consequence of Sound that: “When the world sometimes tells you that you’re a monster, and when you love movies but can’t see yourself in the heroes, you might start to find yourself identifying with the monsters. And then you might start to find yourself wanting better for them. So you create your own stories for them, and for yourself.”

Chavisory says on Tumblr: “Whereas a lot of us who didn’t have those narratives…our minds filled in the blanks in some pretty interesting ways. Including various iterations of not being completely human. Obviously it’s a problematic movie, but I readily and pretty unconflictedly identify with aspects of both Elisa and the Amphibian Man.”

So, what might happens is that you identify with Elisa. Or the Amphibian Man, or both. Elisa, despite it being hinted that her childhood neck injury is the cause of her not speaking, is likely autistic. Maybe the film resonates with you and the representation is meaningful. For me that happened in the casual stimming, the way she moved, and within the first fifteen minutes, the scene where she first meets the creature. I saw in her and on her face the realization that she’s found another society deems “other.” The wonder of immediately needing to touch and use her hands to complete the recognition.

Elisa meets the creature

The protagonist Elisa, a dark-haired woman, leans over the tank with the amphibious creature. She has her hand hovering just above the glass, about to place her palm on it.

Watching the film, I had the realization I’ve found another society deems “other.” I found representation in The Shape of Water. I have always been the Other.  I have been the Other to the point of having a trauma history. And people are now saying it’s not representation at all because it is harmful in messaging. It is not without problems. It is still representation. And I have to wonder how many of these people have ever felt more than a touch inhuman. (If that’s you, then we can maybe talk about it differently).

Elisa found another outcast to see the possibilities in. Are you going to tell me that society should not start addressing how it treats those seen as monsters? Are you going to tell me that I have never felt inhuman from all the things the world has done and said to me, and that I do not deserve to have someone look past what has been painted on me as Other?

I do not think the film is perfect. I think it is still representation. But people are saying it is not representation at all. And when you say that, what I hear is that

those of us who struggle with feeling human in the face of the world, who sometimes identify with the Other and embrace it as a tool to survive, whose narratives and relationships to representation are messy and muddy the waters… should stop trying to find ourselves in representation or anywhere, our very existence and attempts at representation faulty.

We’ve been told that we’re faulty enough already, thanks.

.  .  .

Further Reading

Prejudice after mass shootings is a well-defined pattern

Alternate Title: This autistic with mental health disabilities would like others to develop better pattern recognition skills.

East Coker

Image text:
You say I am repeating
Something I have said before. I shall say it again.
Shall I say it again? 
-From T.S. Eliot’s “Four Quartets,” Part II: East Coker

I have an inordinate fondness of T.S. Eliot’s poetry. I have significantly less fondness of repeatedly having to tell people to stop blaming mental health for mass shootings. But yes, I shall say it again. Because a 2017 Georgetown Public Policy Review article by Delaney Luna notes that “a 2015 study found that 63% of Americans blame untreated mental health problems for mass shootings.” Because “contentious studies associating mental disorders with violence are often cited as fact, overstating the propensity for mentally ill individuals to commit violent acts, and promoting these ideas to the American public.”

(Unfortunately, often gun control legislation introduced in the wake of shootings targets disabled people. There is clearly a mass shooting problem, but any solutions need to be non-biased and not ableist. The public policy article does set up the dichotomy of blaming mental health vs. gun control, so keep the above in mind).

So yes, I shall say it again. Stop scapegoating social minorities – people with mental health disabilities – and evading the real problems. There are patterns to how people respond to these incidents, and patterns behind the motivations of perpetrators.

Fact: There is usually a history of things like domestic violence or white nationalist supremacy discovered in the backgrounds of those who commit mass shootings. Response: Many people, including government policymakers, decline to do anything but blame terrorism (predominantly if the perpetrator is or thought to be brown and Muslim), or mental health (predominantly if the perpetrator is white). It is still apparently easier for many people reporting news coverage, or policymakers, and others to deny these patterns. They believe it is better to scapegoat than get at the real problems… better to try and stop us from having rights.

The discussion for the most recent incident in Parkland, Florida revolves around mental health. There’s also talk of white nationalist ties. Which, great, please talk about white nationalism being one of the factors involved. White nationalism – as recorded by the Southern Poverty Law Center – has a body count even as its proponents play respectability politics in some arenas. But some coverage is talking about white nationalism – and mental health – in the same conversation, and it needs to stop. One Tumblr user puts it well in their post “Extremism is not a function of mental illness.”

Most extremists are average people in a socially vulnerable position that extremist ideologues can exploit. People who feel disenfranchised (legitimately or not.) People who are socially isolated. People who are scared, or angry, or feel cheated.

This isn’t mental illness: this is a social problem.

This is exactly what happens every time social change comes to a head.

It becomes violent when someone feeling threatened by the changes decides it’s time to put the social change back the way it “should be.” It becomes violent because these people are told by their extremist social group that the world is getting out of line because they haven’t stopped it.

Stop saying, directly or indirectly, that only people with mental health disabilities can be responsible for atrocities and violence. We are not, in fact, more likely to be the perpetrators of such violence. Luna notes in the Public Policy Review article that “only about 3 to 5% of all US crimes are committed by individuals diagnosed with a mental illness, and fewer than 5% of all gun-related killings between 2001 and 2010 were committed by individuals with diagnosed mental illnesses.”

Stop saying it when most of us are engaged in such a struggle to survive already. Fun fact: I just got out of a psych ward again within the last few weeks. Surviving is hard.

Diagnoses from hospital stay.

[Partial screencap of diagnoses from my most recent hospital stay, including autism spectrum, suicidal ideation, and bipolar disorder – unspecified. Name of hospital and dates removed.]

Stop saying extremism and its resulting violence is the result of mental health disability. Stop tying mental health disability to white nationalism, the way that’s being done now after mass shootings and whenever the Trump administration does something terrible and/or linked to white nationalism.

So yes, I shall say it again: Stop trying to tie mental health disability to all the occurrences you pretend are unexplainable by anything else.

We’re already dealing with enough without scapegoating being pushed as “mental health reform” and being blamed for social problems that are explained by multiple other factors. We already know you don’t actually want to help us – just protect people from us, but it sure would be nice if you could at least stop making life harder for us.


Note

Conversations on mass shootings do shift with context, and it’s important to note mental health isn’t the only topic of conversation. If the perpetrator was brown and Muslim, Islamophobia comes into play as a prejudice:

 

Via WA No Modern Asylum:

From my friends in Washington state:

…On November 28th of this year, the Guardianship Forms Subcommittee sent out an email asking for advice on creating specific forms for the Washington Supreme Court to approve or deny a guardian’s request to sterilize the person under their guardianship. Linked here is what the subcommittee believes the forms may look like [7].

…These forms try to make the process of asking the Washington Supreme Court to allow a legal, forced sterilization clearer to parents/guardians as well as speeding up that legal process so that people under guardianship will be forcibly sterilized more quickly than before. Creating these forms will result in more forced sterilizations in Washington state…

So what is to be done?

…The person in charge of receiving comments about the forms is Commissioner Rebekah Zinn (Washington State Pattern Forms Committee Chair). Her email, as listed on the call for advice, is zinnr@co.thurston.wa.us.

Please email her opposing this proposal and mention any personal connection you have on this issue. A sample format is linked here at our campaign page… Together, we can make them listen and stop this practice!”

via Don’t Make Eugenics “Great” Again: Oppose Forced Sterilization! — Washington No Modern Asylum

The Judgment about “What Counts” as Sexual Assault

This post goes into detail of an instance of non-rape sexual assault in the first paragraph. 

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In high school, one semester, a girl in gym class kept stroking my legs – well above my shins. She sat in the bleachers below me. I told her to stop, several times: it was uncomfortable and I hated and still hate being touched. She cooed at me and mocked my discomfort. I told the gym teacher, and he talked to her, but it didn’t stop. I resorted to lashing out with my legs in the general direction of her face. Finally, I started skipping gym class often that semester.  

I didn’t realize it was sexual assault with the probable intent to do worse until this year. So I never told anyone else at the time, though I don’t know if that would have helped anyway. I thought sexual assault only happened how it did on Law and Order: SVU, which I had caught episodes of in passing. No one ever told me otherwise. Adults in my life told me to carry pepper spray and not walk alone in the dark. They never told me to think about people I was at least vaguely acquaintances with. They never told me what to do if it happened. 

It seems that people, particularly autistic people like myself, rarely get taught about boundaries or consent: indeed, disabled people are often not even taught sex-ed or how to recognize abuse. To complicate matters, many autistic people have been through Applied Behavioral Analysis (ABA). Its methods violate children’s boundaries and bodily control, and leaves them vulnerable to more abuse in the future.

There is also a general perception around sexual assaults that say they’re not “bad enough” or don’t “count,” from all kinds of people. As if it is easy to judge what it is and isn’t sexual assault when you are not the person who was assaulted. It happens to people who have been raped, groped, touched, and/or assaulted in any way. For people who have been groped/touched, it’s that it wasn’t rape, and for people who have been raped, it often is still not seen as a rape. Very few assaults “count.” For disabled people in particular, some reasons include: “you should be grateful someone wanted to do it to you,” and in the case of some disability types, “the person didn’t understand or care it was happening, so it’s not a big deal.”

When people decide they can say what counts as “enough…” That’s not helping anyone be taken seriously when they report/tell people about sex crimes and assaults. Numerous groups of people already have trouble reporting or being believed about assaults. For instance, many disabled people receive direct support from service providers or family members. When these people assault them, it is harder to leave or report assaults. And it helps perpetrators get away assault and makes it more socially acceptable because it’s not “bad enough.”

People who have been assaulted are told it’s not “bad enough” and they should not have too many feelings, or that they don’t have enough feelings so it’s not “bad enough.” And of course, the perpetrators’ feelings are taken more heavily into account. As Rabbi Ruti Regan notes in this piece, “Victims are pressured to disregard their own feelings in order to help perpetrators feel better about themselves.”

If you are: Stop saying we should suck up our feelings because it’s not “bad enough” and it doesn’t “count” and “they have to live with it too”  and …

Stop saying it’s not “bad enough.”

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It is important to note that Me Too appears to have been started some time before now by a Black woman, Tarana Burke, when credit is going elsewhere.

Carrie Buck’s letters, and badly written narratives about them

Carrie Buck was the institutionalized plaintiff of the 1927 Supreme Court case Buck v. Bell. In a case rigged against her, the Supreme Court upheld a 1924 sterilization law. The Virginia institution sterilized her, then later “paroled” her: they sent her to do poorly-paid housework for local families. For any arbitrary reason, the Colony could re-confine her. She repeatedly pressed for a full discharge, and eventually won it. These facts are not in dispute.

Dr. Paul A. Lombardo, an academic scholar on Buck v. Bell, writes about these facts in a recent Undark Magazine article. He presents some letters written by Buck during her “parole” and post-discharge period as an untold story. It is a disingenuous claim to say he is presenting a new angle on an untold story.

Buck’s story has been told many, many times, by journalists, historians, a film in 1994, and an upcoming film starring Dakota Johnson. And her letters are not undiscovered, her thoughts not wholly unknown: The letters have been around for years, in the state library of Virginia, and excerpted in journal articles and books. Yet he writes in the article: “We also now know that Buck left her own record.” Buck’s story is albeit being told in flawed ways:  the narrative of her being “mentally normal” as the reason it was wrong to sterilize her. It is a narrative that journalists and scholars have done little to correct, including Lombardo. In fact, he uses these letters to promote that narrative in his article.

And it is true that they have not been publicized in Internet articles such as Lombardo’s (that I could find). But to say that Buck’s thoughts have never been known before, to say that we just now know “Buck left her own record,” is to say that we did not know before that Buck had agency.  To use Buck’s letters to promote a narrative that fails to acknowledge that eugenicists used disability, real or not, as a reason to sterilize people – is also wrong. To use Buck’s letters as proof of “not disabled” meaning she shouldn’t have been sterilized is wrong. (Also, disabled people are often denied agency in a number of ways.)

It is not only insulting to disabled people, but it is also insulting to Carrie Buck and what she went through. Carrie Buck was sterilized under a government law by people who used public fear of disability and “defectiveness” to do it. It was not for people to claim “not disabled” was the one quality that made her sterilization wrong. It was not for people to deny her agency.