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.

Advertisements

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.”

 

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

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.

Rewriting the Narrative on Psych Ward Abuse in Journalism

Psych Ward Reviews gained a new feature in January 2017: a news article repository of staff-on-patient abuse in hospital psychiatric wards. It is an ongoing effort, both of searches and a morbid set of daily Google Alerts with phrases such as “psychiatric patient abuse.” As part of my search process, I have read over about two hundred articles so far.

One thing of note was that many of the articles on staff-on-patient abuse I found were not in major publications. They were in local news outlets or smaller magazines. And as I knew, there are many failures of psychiatric wards as a crisis care model. These failures can involve staff-on-patient abuse, suicides, ill-maintained facilities, and Medicaid fraud. My focus here is how journalists cover abuse and other failures.

Journalists do so with a few different lines of thought. Many fail to address issues that come with psychiatric wards as the main method of crisis care. These problems include taking away patients’ rights and ability to make decisions. Instead, they discuss issues such as funding and staffing shortages, and overcrowding and bed shortages. However, the reasons for psych ward abuse are power dynamics and ableism.

The system requires institutionalization in secured wards away from the public. Patients then lose their rights (available in theory). The power shifts to doctors and staff, who make decisions about a patient. Many hospitals seek patients for profit. These are settings prone to abuse. We must build a stronger network of community-based crisis care, including peer respite centers and support. There must be meaningful oversight and accountability for any community care providers.

But why don’t journalists talk about creating alternatives to psych wards? The reasoning by many journalists is that shortages result in increased abuse and neglect of patients by staff. They then describe hospital failures as inevitable because of these shortages. But the psych ward system’s issues are structural, rather than wholly solvable with money. Journalists could instead talk about these structural failures. They could do so in many ways.

They could cite the various works around abuse in institutional settings, and question power imbalances. They could push for more accountability and data on abuse rates in articles. They could interview former patients, to see what community options they want. Depending on the size of their platform, they could craft a new crisis care narrative for the broader public. The narrative would present alternatives entrenched in community-based, rights-affirming crisis care.

 

2016 was lighting candles to mourn, but it was also carrying torches high

Year in Review: 2016

 Disability Rights, State of the Blogger, and Looking Ahead to 2017


  • Progress in 2016
    • #CripTheVote and disability on stage in U.S. politics
    • Disability Intersectionality Summit
    • Other moments in disability rights
  • State of the Blogger
    • Overview of the blogger’s 2016
    • Looking at, and valuing, disability and autistic history
    • Top five viewed posts and pages
    • Posts and pages that I liked but had fewer views
  • Looking Ahead
    • 2016 as an atypical year and the blogger’s plans for 2017
  • Conclusion

Progress 

#CripTheVote and disability on stage in U.S. politics

cripthevote-2

The logo of #CripTheVote, designed by Mike Mort. Blue text reads: #CripTheVote. There is graphic-design image of a voting ballot box with a ballot being dropped in. The ballot box has four blue squares, with line art in white of the standard wheelchair user disability icon, a brain, a pair of hands signing, and a person walking with a cane.

 

In 2016, Alice Wong (Disability Visibility Project, which chronicles disability stories), Andrew Pulrang (Disability Thinking blog and Center for Disability Rights), and Gregg Beratan started #CripTheVote, which is

a nonpartisan campaign to engage both voters and politicians in a productive discussion about disability issues in the United States, with the hope that Disability takes on greater prominence within the American political landscape. We hope to encourage people with disabilities to engage with the election at all levels from President on down, and to vote. We also want to hear candidates engage with disability policy issues and disabled people as much as possible.

They hosted Twitter chats, provided resources to disabled voters, and sparked a more organized engagement with politics from the disability community. It brought disability to the stage of politics in a major way, and enabled disabled people to have a central platform to organize around and put their resources and news.

Hillary Clinton released an autism plan and announced support of the Disability Integration Act after an autistic person stood up and asked if she supported it, leading to then-candidate Bernie Sanders co-sponsoring the bill. Then at the Democratic National Convention, a disabled person – disability rights activist Anastasia Somoza – took the stage. 2016 was the year, as Dylan Matthews writes, that disability rights broke through in national politics and disabled people became seen as a constituency by politicians.

Disability Intersectionality Summit

This year, the Disability Policy Consortium accepted proposals and held a Disability Intersectionality Summit. Presentations included topics on the intersections of being undocumented, being LGBTQ+, being a person of color, having mental health disabilities, on #DisabilityTooWhite – the hashtag and movement around the the disability community’s failure to represent racially diverse voices – and more. It was held in Boston on November 5.

Other moments in disability rights include: 

Disability rights groups struck a major blow to sheltered workshops.  Maryland voted to end subminimum wage. An investigation has finally opened into Illinois’ group homes for disabled people. A major Minnesota job provider for disabled people agreed to reform its hiring practices. Michigan banned non-emergency restraint and seclusion for disabled students. Georgia’s governor spoke in favor of Employment First policies for disabled people in Georgia.

The FDA finally put out a proposed rule for banning contingent electric shock devices like those used at the Judge Rotenberg Center. A major case involving a girl and her service dog went before the Supreme Court, and could open up an easier path for disabled students and their families to make schools comply with various laws. Litigation against Georgia’s substandard, segregated “education” system called GNETS for students with disabilities by the Department of Justice moved forward.


State of the Blogger

Overview of the blogger’s 2016

It was a hard year, like it was for many. I spent a serious amount of time dealing with badbrains. I wrote about the dehumanization of psychiatric wards here. I adopted a cat, though, so that makes up for a lot of things.

In terms of other advocacy, I continued volunteering for a non-profit’s social media that I have done since 2015. I also kept working for a non-profit that I been with since December and continued to blog. I began work on a great number of blogging projects like Autistic Community on Medium, and Welcome to the Autistic Community on Tumblr. I also ran Autistic History Month this year.

I also decided to turn my life experiences and history research into writings for publications and have published with the Establishment and the Deaf Poets Society on institutionalization and psychiatric wards, eugenics history and Buck v. Bell, and my experience with housing in college.

Looking at, and valuing, disabled and autistic history

In addition I have been working on my disability history/eugenics history blog more. I revamped my eugenics history 101 post into a downloadable PDF. and updated the resources list for that blog. I worry a lot about eugenics as a popular movement being back full force – it’s still here, in some areas and ways.

I also ran the Autistic History Month blog this year; a link compilation for autistic history can be found here and the posts for 2016 here. As Sarah Pripas-Kapit and I remarked in the closing post for Autistic History Month, history is essential to working for change today:

Thank you for furthering the knowledge of autistic history, and showing that we have a history. I am the first to admit that I don’t know everything about autistic history… Knowing history is vital, especially in this time of turmoil for many. Knowing autistic, and other disability history, is vital. If we don’t know how we organized and formed communities in the past, it’ll be harder to organize and sustain community now. -Kit Mead

It can be tempting to believe that history is an upwards trajectory, with things always getting better and better. Historians call this the “Whiggish view of history.”

Yet the Whiggish view of history oftentimes is not supported by evidence… While the past ten years has been a period of progress for the autistic community, I fear that we may be heading into a period of regression. As so many others have said, the election of Donald Trump to the presidency is looking to be disastrous for people with disabilities. Like many of you, I am concerned about the months and years to come.

History tells us that civil rights are never a done deal. We have to work continually to uphold them.

But I hope that history can also provide hope. We are not the first generation of disabled people to face an ableist state and rollbacks of progress. By looking to the past, we can find a way forward during these turbulent times. -Sarah Pripas-Kapit

Top five viewed posts and pages

Posts and pages that I liked but had fewer views


Looking Ahead

2016 as an atypical year and the blogger’s plans for 2017 

Like s.e. smith says, 2016 was not normal and therefore, we should not allow ourselves to long for 2016 and make it a crowning glory of years that we look back to sometime in the middle of 2017 and go “well, things were so much better then!”

I really recommend reading the post by s.e. smith for how we cannot normalize 2016 because it wasn’t normal. We lost a lot in 2016 and our state of politics has steadily descended into even more chaos than usual. It’s not like I particularly look forward to the next several years’ potential events, but I will take a lot of pride in being alongside many other great activists, working to keep what progress we have made.

In 2017, I will continue to update my post-election resources page and continue my advocacy work, sharing and disseminating resources. I will continue to blog about the things that mattered before this election, and will blog on the things that matter more now because of the election.


Conclusion

2016 may have been holding candles up against a darkening sky in mourning, but it was also keeping candles lit and torches high against rain and darkness. We made a lot of progress in many different areas, and we also lost a lot – but we have faced dark times before, though never like this. We will work against the rapidly encroaching darkness of night to be lighthouses in the fog and darkness for many ships. Torches held high, we face 2017 and the years to come.

Carrie Fisher (Princess Leia) Wrote Books and Had a Service Dog

carrie-fisher

[Image description: Three images related to Carrie Fisher. From left to right, Carrie Fisher wearing glasses and kneeling next to her service dog, the French Bulldog Gary, at a red carpet event; Carrie Fisher dressed in white as Princess Leia with her iconic hair buns, surrounded by Stormtroopers; and Carrie Fisher’s book Wishful Drinking, which has her name, the title, and an image of Carrie Fisher with hair buns facedown on a table with a martini glass in her hand.]

In high school, it was mentioned to me in passing by someone that Carrie Fisher, whom I knew as Princess Leia, had bipolar disorder.

I shrugged, and said, “Oh, okay.” She was still Princess Leia.

Sure, depressive episodes and generalized anxiety made up a majority of my days, a damp humid cloak like the Georgia summers I liked to wander down the streets in – alone. An autistic, depressed, anxious wreck, isolated and considered socially unacceptable. But Carrie Fisher was just Princess Leia, right?

I never thought she meant much to me besides her role in Star Wars until a short while ago. In college, I became invested in disability rights and later, after my first and second hospitalizations in a psych ward, mental health rights as well. Each discharge from the hospital read that I had major depressive disorder, not bipolar disorder. Each hospital had only seen me for suicidality. They didn’t see the times I felt higher than the hills I once wanted to die on, and faster than the too-fast DC Metro trains. I find the Metro a relatable metaphor. I too sometimes go too fast, experience frequent malfunctions, and occasionally derail.

But I find her more than a relatable metaphor. Carrie Fisher was a bipolar person who dealt with substance abuse issues. She was often considered socially unacceptable. She openly spoke about her mental health disability, and substance abuse issues (which were in part an attempt to keep her manic episodes in check). She was open about her dog Gary’s role as a service animal and took him to public events. And she was also the actress who played Princess Leia, a mother, an author, and a script doctor who edited scripts.

She was Princess Leia, and she was also an outspoken mental health advocate.

I owe her a lot.

For talking about about everything in the open. For being Princess Leia but also someone who employed a great number of coping strategies for her mental health, and talked about them. For sometimes being considered socially unacceptable.

For showing me that she, Carrie Fisher – Princess Leia – was as outspoken in real life as she was on screen. For showing me that it’s possible to be vocal about personal struggles and what you don’t like – and what is good – about your brain and yourself.

Autistic Unemployment: False Solutions and the Tech Industry Narrative

A Response to the WIRED Article “Autistic People Can Solve Our Cybersecurity Crisis” by Kevin Pelphrey

I have a familial connection who used to work for a medical technology company. Her then-supervisor knew I’m autistic. Then-supervisor would ask familial connection if there was a way to get me involved with the company. Familial connection would inform then-supervisor that autistics were not all the same: that I was not, in fact, a software programmer and also could not read code at superspeed and catch errors. Repeat cycle several times.

(I am good with social media, perhaps. But I can barely scrape together rudimentary HTML to put jump links on the Resources page for this blog, and it took hours of Googling and many failed attempts. I can’t write CSS. I can’t write JavaScript. I can’t design webpages or websites.)

There is nothing wrong with autistics who are good or excel at coding and software programming and technology and mechanical things. Autistics who are good at those things definitely exist. There are many things wrong with assuming all autistics are the same, that we all have the innate ability to be computer, mechanical, and software geniuses. To take it a step further: it is also wrong to assume that autistic people are valuable because of a handful of us do possess that kind of technological and mechanical ability.  

(…We’re people and have a wide array of skillsets and interests, and some of us are really good at computers, like some non-autistic people are!)

Those things are what is wrong with the WIRED article “Autistic People Can Solve Our Cybersecurity Crisis,” along with many other direct messages and subtle implications (including a not-so-pleasant quote referring to autistic children growing up as “the coming tsunami of adults with autism”).

Author Kevin Pelphrey, director of the George Washington University’s autism research institute, argues that we can fix the 70-90% unemployment rate for autistics by hiring us in the cybersecurity industry. He further argues that the this industry has a shortage of labor, so hiring us would fix that problem. His main evidence behind this argument seems to be the fact of Alan Turing’s existence.

In his argument, he utterly dismisses autistics with intellectual and/or other cognitive disabilities as having worth by writing, “At the same time, more than three-quarters of cognitively able individuals with autism have aptitudes and interests that make them well suited to cybersecurity careers. These include being very analytical and detail-oriented as well as honest and respectful of rules.”

It’s hard to know where to begin with unpacking the ableism toward autistic people, especially autistics with cognitive and/or intellectual disabilities, in that quote. It employs a number of tropes, reminiscent of the film Rain Man and common literary tropes. Lastly, he simplifies the solution to a complex issue around employment the cybersecurity industry hiring “cognitively able” autistic people.

Since only some of us are good at tech and we are not, in fact, all Alan Turing, this proposed solution will result in employment for far fewer people than Pelphrey envisions. This is a grievous disservice to autistic people, many of whom are struggling to find employment – and quite often in fields other than tech. This article tells employers that autistic people are only good at tech. It tells the general public that our only redeeming quality is being good at tech, and that we are only worth something if we stop the “monumental waste of human talent.”

The author heads a research institute on autism, but rather distressingly, cannot seem to move past a trope that all autistic people should be employed in tech. Our skillsets and interests are as varied and diverse as autistic people’s traits are. If we want employment, we should receive support to work where we want to. We should receive support to engage in our interests. Our contributions are valuable, regardless of whether they are in the workplace.

The solution to the unemployment rates lies not with increasing supported employment to only one industry. Whether it is through a government vocational program or an autistic youth’s transition planning in school for adulthood or a disability advocacy group, it lies with increasing support for us to do what we want to do.

How the Media and Society Objectify Disabled People

Introduction: Inspiration Porn 

The most recent example of inspiration porn has crossed my Twitter feed. It is that a Florida State University college football player sat down and had lunch with an autistic boy in a cafeteria. The story got picked up by the New York Times. I don’t fault the college football player very much, if it all (but I hope he asked the autistic student if the company would be welcome). The football player probably just saw a person likely excluded by classmates. He wanted to make sure the student was not alone. At worst, there is the element of pity involved, but the act itself was not ill-intended.

I do fault the Internet and the news media. We, disabled people, see these types of things spread like wildfire, time and time again:

  • A disabled person does something that a non-disabled person does, which often plays into the “supercrip” media model of disability
  • A non-disabled person treats a disabled person with kindness.
  • A non-disabled person helps a disabled person (whether the disabled person asked for help or not).

Two examples are the way the Internet took hold of the autistic store employee decorating a cake, and the employee at a Kentucky Qdoba helping a physically disabled woman eat when she asked for assistance. In the age of easy access to recording devices and uploads to YouTube, Facebook, and other social media platforms, these stories attain a viral ferocity. Journalists pick up on the fact that the video or story is trending across social media. News articles about the story crop up, fueling its spread even further.

We Could Be Next: The Risk of Being Filmed

The effects of these viral stories are quite damaging, even when one does not go to the most extreme consequences. Any one of us could be the next story by asking for help, or getting help even if we don’t want it. Since the conductor announcements of what train is approaching are hard to hear, a  blind person asks a subway stationmaster to help them get on the right train. An autistic person has a shutdown. Their friend helps them retreat to a quiet location without fanfare at the scene. A wheelchair user faces a curb cut, and they decide to complain to the city after finding another route. But a stranger rushes over anyway and helps get them over the curb cut. Someone could film any one of these situations and unleash the tidal wave of feel-good comments, shares, and news stories.

We are all too aware of the risk of being filmed for someone’s feel-good story (or for someone to mock, but that could be another post). We already face enormous pressure to not ask for help – to be the “supercrip” and “overcome” our disabilities – and the risk of being a viral story is yet another reason we might avoid asking for help when we need it.

Inspiration Porn Hides Key Issues

Inspiration porn also hides key social and policy issues. In “Inspiration Porn Further Disables the Disabled,” David Perry writes of these kinds of stories, “[the stories] all feature people doing good things. There’s nothing necessarily wrong with the content of these stories, of course, but the way they’re told conceals the real issues faced by the disability community… Inspiration porn makes us feel that everything is going to be OK.” Perry also wonders: Why isn’t the state of Kentucky providing community-based supports to the wheelchair user at Qdoba, so she doesn’t have to rely on strangers to help?

In the case of the autistic boy eating alone at school that we started off this post with, why has the school failed to model social inclusion? What about the scenario of the blind person asking for help getting on the correct train – why aren’t conductor announcements for arriving trains distinct and clear? And for the wheelchair user facing the curb cut – why is there a curb cut to begin with?

The Destruction of Privacy

They also destroy our right to privacy. As one writer in the blog post “Deprivation of privacy and other thoughts” points out, “persistently violating someone’s privacy over time also just establishes a standard (to both that person and everyone around them) that it’s acceptable to persistently violate their privacy over time.” Even if we haven’t had our privacy eroded over time, often journalists publish our names, even if the original poster of the video or story did not. Everyone now knows us as “the person in that inspirational video,” and the person helping as our hero. The instantaneous destruction of privacy tells society that it is acceptable to sacrifice our privacy to make a feel-good news story, and to do it to any disabled person… over and over again.

How It’s Toxic for Us

Finally, we notice when we get objectified as inspiration porn. We feel objectified. It is toxic. Being objectified hurts our self-image and mental health. It erodes our ability to feel safe and like we can have even some privacy. It hampers our ability to set boundaries around privacy. It makes us feel like we have no control over our life and story. We notice, and it hurts in more ways than one.

Conclusion: The Vicious Cycle 

And of course, the way these viral stories get reported and commented on further a vicious cycle, encompassed in the following:

  1. We (disabled people) get seen as other – less than human, or a lower level of human.
  2. Because we are other, acts of kindness toward us seem newsworthy. We are not real people, after all. We are other. Kindness toward unpeople is as newsworthy as large-scale natural disasters and transportation accidents.
  3. The writers of these news stories objectify us. We are pity objects and have no agency. We exist to make people feel good about their deeds. We reach the bare minimum of humanity, if we are human at all. They make us seem other by teaching people that it’s a miracle anyone is nice to us at all.
  4. We get seen as other. Kindness toward us is newsworthy. We get objectified. People learn that being nice to us is miraculous. We get seen as other… 

But we are here and human. We can tell our own stories, if anyone bothers to ask. If no one asks, we tell them anyway. We can be our own advocates, and we can also be activists and writers and professionals. The Developmental Disabilities Act says “disability is a natural part of human experience,” and this is true. It is past time that non-disabled people get accustomed to seeing disabled people in their midst as normal rather than as a news story.