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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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 Judgment about “What Counts” as Sexual Assault

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

———-

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.”

———–

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.

Autistic community issues: “Gatekeeping words” edition

*Update: The autism ask blog has posted a well-worded apology after taking the time to consider many of our thoughts and feelings on the matter.

Tumblr folks: This is an expanded version of my other post.

There has been (another) recent kerfluffle regarding language (this instance is on Tumblr). Specifically, people are gatekeeping the term “special interest”. An autistic person decided that an ADHD blogger who manages a blog for ADHDers was incorrectly using the term special interest due to her being non-autistic. Despite her providing evidence that it is not autism-exclusive, the person went to an autism ask blog. There, they were told the term is autism-exclusive. The autism ask blog is wrong.

With that context: I am an autistic person with ADHD, and I have a request. Could you stop telling me that I have to use two different words to describe the same experience I have that I have no idea which “diagnosis” it comes from? (By the way, brains are not partitioned like that, so my neurology is affected by both, sometimes in very interchangeable ways that you don’t know which one is which!)

And the autistic community, as one blogger​ points out here– has a pretty long history, and we haven’t been this exclusionary with words from the start. I have put together and managed submissions for some of that history at ourautistichistory​ (Autistic History Month). And some of it is probably lost as domain names expired or the list servs went defunct. But the moderator of the actuallyadhd​ blog, who has ADHD, has been involved with list servs and later platforms of the autistic community since 1994. She is an autistic cousin, which is a decades-old term that refers to someone “who is not NT, is not quite autistic, but is recognizably “autistic-like” particularly in terms of communication and social characteristics.”

To ignore that fact, along with the first blogger’s note that these kinds of words have not been considered exclusive to the autistic community from the start – which is roughly three decades ago – is negligent. A community should know its history, and we need to know our history to work for change. 

And it tells people that we are not a community that welcomes people unless they share our specific neurotype. It tells many people who are wondering if they are autistic that we are a community who will not welcome them. That may make them afraid to approach us, or learn more about autistic community and autistic culture. It tells people we are a community who is willing to gatekeep, and that is not what I want people to think of the community I love and fight for.

Expecting ways of communicating to define an Autistic person

Feedback is welcomed, but please see the bottom of the post first.*

Autistics have largely argued that no one should assume we are alike. Our differences include communication styles, external presentations, or supports needed. Being human like anyone else, we also differ in goals, interests, and hobbies. We’re all still Autistic, but we need others to stop basing all their assumptions on that. In particular, people make assumptions from communication styles. Some of us communicate with significant support, little support, or somewhere in between. Some of us use assistive technology and some of us don’t. Some of us don’t have access to language most people understand. And defining us based on communication style we use (or off any one or two traits) is unhelpful.

Yet it’s not just an issue of non-autistic people making snap judgments. Some Autistics who talk neurodiversity on the Internet also like to ascribe certain Autistic traits to select narratives. One such narrative is that those of us who identify ourselves as speaking Autistics tend to be non-visibly autistic and have few direct support needs. Often, the narrative includes the idea that we’ve learned how read non-autistic people’s behavior or at least mimic it. Many posts intended to be helpful for community members are written through this lens. There are Autistic people who fit this narrative, and there is nothing wrong with that. The issue occurs when the narrative doesn’t make room for other people’s stories.

I identify myself as a mostly-speaking Autistic, and I don’t fit well into that narrative. My communication style is assumed to be “expressive” because I talk out loud most of the time. I’ve written about it before in the blog post “You call me expressive and miss the struggle it takes.” There, I wrote about my personal relationship with speech, and the incorrect inference someone made about me. They decided that I couldn’t have many support needs or real struggles with communication out loud.

But I do have a number of direct support needs, somewhere between “needs little to no direct support” and “has high direct support needs.” My mother, who lives several states away, attempts to provide what support she can, but I honestly need more in-person help. I am able to take care of my cat, but taking care of my own needs is harder. I am forced to navigate a system and a world not designed for me with very little built-in to help me. I also am not good at reading people, and it’s a challenge to mimic non-autistic people’s social norms. The majority of the time I also display body language and speech patterns that are visibly Autistic and/or neurodivergent.

Not all autistic people who speak the majority of the time are like each other, and it is harmful to assume this falsehood. I received and still get little support, in the past (such as during college) and now, when I need it. Many posts I see that are intended to be helpful for the type of Autistic they assume I am are actually not, either. And it harms Autistic people with higher support needs than mine, as well. The narrative doesn’t leave much room to presume competence (which is different than valuing a person only if they have some secret gift, which many seem to base their respect around). Few posts in the community are geared to be helpful for high-support Autistics who are very visibly so (Yes, I have admittedly written these posts before, and will probably mess up again in the future).

People who espouse this narrative seem to assume that other Autistics have the same struggles and the same strengths – and therefore there is no room to even consider what high-support Autistic people, and other people who don’t fit the narrative, can contribute to our movement. Non-autistic people should stop judging us from one or two features. But some in the Autistic community would do well to stop, too.

*(For the record – no, I’m not saying most of the people in the community make these kinds of assumptions. Just some do, but it still really needs to stop).

Against eugenics, and for a future that includes autistic and disabled people

Blogging Against Disablism Day 2017

In 1993, autistic advocate Jim Sinclair wrote “Don’t Mourn For Us.” It read “This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be… Don’t mourn for us. We are alive. We are real.” It appeared in the Autism Network International newsletter as an outline of a conference presentation they had given to parents of autistic children.

There are still many people and organizations who believe that autistics should be mourned for in life, rather than death; that there needs to be a way to find the ‘normal’ child who has been lost to autism, or prevent more autistic people from existing – cure culture. Cure culture creates dangerous dynamics, in which there is a strong focus on “fixing” autistic people, along with “battling” and “eradicating” autism. This culture also creates fear of autistic people and traits. One of the sources for the common cure culture we still see today lies in eugenics, a movement that gained popularity in the early 20th century.

It has been twenty-four years since “Don’t Mourn for Us.” We have made much progress. These include advances in representation, such as Julia the autistic Muppet and the company Apple putting out autism acceptance ads. Disability rights appeared on the political stage in a major way in 2016. The Autistic Self Advocacy Network, founded in 2006, has already become a significant player in national public policy. There have been pieces of legislation – like the 2010 Affordable Care Act – that benefit many autistic people, along with court rulings favoring disability rights and inclusive education. The Centers for Medicare and Medicaid Services issued an HCBS settings rule in 2014  that aims to give people with disabilities support in real community settings. Lindt Chocolate stopped donating money from their chocolate bunnies to Autism Speaks. And there are more victories, large and small, I could name.

But some of the largest autism charities in the nation, such as Autism Speaks, are still ones that reject advocacy by autistics, and some people still believe in discredited theories of causation and quack cures. But more disturbing is the eugenics ideology being seen in US politics, and around the public conversation on disability – an example being immigration restriction. The ideas behind eugenics say that behind the moral failings of people – and of society – there is a hereditary cause. Some people, supporters of eugenics argue, are “born to be a burden on the rest.” Conversely, supporters of eugenics also believe there are genetically and morally superior individuals.

As Sarah Jones writes for New Republic: “But eugenics, though discredited, has never been abandoned. In fact, the most powerful people in America appear to enthusiastically embrace the idea that humans can be divided into inherently superior and inferior specimens and treated accordingly… Of course, none of the people in Trump’s inner circle would describe themselves as eugenicists. They would call themselves capitalists, patriots, and Christians.” Examples include Trump’s statements on genetic superiority, Steve Bannon’s desire to “limit the vote to property owners,” and Jeff Sessions’ support for the 1924 Johnson-Reed Act – an immigration restriction law heavily influenced by eugenicists.

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

As ASAN’s executive director Julia Bascom wrote for Slate about the Trump administration, disability, and the autistic community,

He sees my community as damaged goods. Recent reports indicate that, in addition to meeting privately with anti-vaccination groups, the Trump administration may convene a task force to relitigate the clear and settled science on this issue, potentially headed by noted anti-vaxxer Robert Kennedy Jr. Like so many of his policies, this isn’t just an issue of a lack of respect for people with disabilities—we cannot forget that this dishonest and unscientific nonsense has a body count.

This administration espouses eugenicist views. This administration buys into dangerous causation theories. This administration sees us as a public burden. Eugenicist views run through so much of the history of cure culture and causation.

Eugenics is a threat to the autistic and disability communities, and it is a threat to so many others.  This threat is palpable as the White House and Congress try to strip 24 million Americans, many of whom are disabled, of life-saving health insurance. It is clear in a leaked draft of an executive order targeting disabled immigrants and their families. We don’t know if Jeff Sessions’ Department of Justice will enforce the 1999 Olmstead ruling, which helps keep states moving toward community integration – along with the Medicare and Medicaid funding that is at risk. It is evident when the White House lights it up blue for Autism Speaks’ brand of awareness rooted in harmful rhetoric and support for causation research.

But, as ASAN’s statement on the White House lighting it up blue reads, “ASAN will not let our community be forced back to the too-recent time when the public consensus was that autistic people should not exist.” I’m with them. The autistic community, and the disability community, must fight as we are able to against eugenicist and discriminatory policies and attempted actions. We cannot go back to being seen as nothing but a collection of causation theories, damaged and broken and in need of “fixing.” And we must fight against any policies that promote prevention research, policies that tell us we should not be part of humanity’s future. Because we are part of the future.

After Bell sterilized Carrie Buck, he was told “a hundred years from now… your descendants may well be proud.”

And other reasons Adam Cohen is wrong about eugenics and gene editing

On February 14, 2017, the National Academy of Sciences (NAS) and National Academy of Medicine (NAM) released a report entitled “Human Genome Editing: Science, Ethics, and Governance.” The report proclaimed that, with caution, limited clinical tests of genome editing should go forward. But human genome editing is controversial. Many international reports and laws support bans or limitations on genome editing.

The report departs from these internationally accepted ethics and laws, wrote the Center for Genetics and Society. (CGS). CGS is a science and bioethics group advocating “responsible uses and effective social governance” of human genetics. CGS put out official comments and a blog post on the report.  CGS also mentions the possibility of eugenics.

On March 17, 2017, Adam Cohen – author of Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck – began an op-ed in the Los Angeles Times with the words:

We entered a new phase as a species when Chinese scientists altered a human embryo to remove a potentially fatal blood disorder — not only from the baby, but all of its descendants…Last month, the scientific establishment weighed in. A National Academy of Sciences and National Academy of Medicine joint committee endorsed embryo editing aimed at genes that cause serious diseases when there is “no reasonable alternative.” …But the committee was also right to support limited embryo editing. This time around, eugenics could be a force for good.

He concludes the op-ed with:

Again, that need not be a bad thing. Twentieth century eugenics has rightly been called a “war on the weak” — its goal was to stop people with conditions like Huntington’s disease from reproducing. Twenty-first century eugenics can enable people with the Huntington’s gene to have children without it. The new eugenics can be a war for the weak.

Cohen’s op-ed, as disability rights journalist David Perry notes, “seems to miss the lessons of the history he synthesizes in his book… Any eugenic gene editing process that is constructed in our culture will reflect the ableist reality in which they are created.”

Further, Cohen misses several other points.

Eugenics was not just state-sanctioned sterilization. Eugenics was not just about preventing “the unfit” from having children. It was, and is, also about immigration, “racial purity,” and eliminating the “mentally defective” population through any means – whether by institutionalizing people judged as such, sterilizing them, preventing their marriage, or in the case of the Nazis, also murdering them.  Eugenicists were not worried about the people with any kinds of hereditary conditions, real or perceived, and far more keen on eliminating the “threat” to the sanctity of American society and economics.

Cohen asks the question if eugenics can be used for good. A colleague told Dr. John H. Bell after Bell sterilized Carrie Buck, “a hundred years from now you will still have a place in this history of which your descendants may well be proud.” Eugenicists believed they had the superior knowledge to know what was best for society, doing public good, based on pseudoscience and their own intensely biased beliefs. They believed future generations would be proud of their work – future generations that contained no “mental defectives,” generations that had been altered by them.

Cohen said “yes” in answer to his question, that the new eugenics can be for people with genetic conditions – that eugenics can be used for good. But he acknowledges that future generations would be permanently altered.

There is no such thing as good eugenics, and Cohen misses that point by a wide mark.

Teach Autistic Youth They Have a Community (Part One)

Other Autistics have written on the importance of disclosing an autism diagnosis to children. I fully agree. I also think knowing a diagnosis is a powerful tool in many ways, but it is not the only obligation of parents. I knew immediately about my ADHD diagnosis at age 7 or 8, then later my autism diagnosis at 14. I didn’t know I was disabled until college.

Many adults in my life told me I had ADHD. They just said it made me hyper, and gave me attention issues… then kept saying the same positive things about me: Smart. Unique. Creative. Reads a lot. When I got my autism diagnosis, they started saying: Smart. Reads a lot. Very high-functioning. Uniquely aware [of the diagnosis]. When they spoke of things I struggled with – like attention issues, staying organized, being polite, and making the right words happen – it was not to acknowledge disability, only deficit. It was not to work with me or discuss ways other people could adapt. I needed to adapt to the world, except for some accommodations.

They tried to quantify my life into skills and deficits. They told me I was more aware than others – like those in the special education classrooms – despite those kids being the most accepting of me when I hung out in their classrooms. I learned my deficits outweighed other qualities. I learned that there was no one else at all like me. I learned that I was alone. Not knowing what the diagnosis meant affected the ability to find friends, worsened depressive episodes and anxiety, and increased social isolation.

In my younger years, I had been able to get by through extensive book reading, writing fiction, and other solo activities. As I aged, my differences became more apparent. I wondered why I couldn’t be like everyone else or have friends. I had about one close friend in my high school years – an online one who meant a great deal to me. We couldn’t meet up in person, which I wanted desperately.  I wouldn’t know anything else but isolation until college – and making two autistic friends, along with a couple of others who accepted me.

The diagnosis given to me answered the question why for why I worked the way I did. No one helped me understand how it made my brain and body work. No one explained that it is a disability with ups and downs and effects from society. No one aided me in accessing community and culture. The diagnosis did not simply hand me all the tools I needed for life, in of itself. Community, once I found it, did.

Much of the autistic community may exist online, but it is vital. It will give youth access to writings by other autistic people. It gives them access to people who have written or know about coping tools, self-advocacy, and policy issues. It gives autistic youth an autistic culture. Parents (and other adults interacting with autistic youth), please explain autism to autistic youth. Please tell them more than a diagnosis. Please help them find other autistic people. If you don’t know the answers to their questions about autism, ask autistic people. It will change their world at least as much as telling them the diagnosis.



Part Two (Upcoming): Tips and Ways to Teach about Community

We need to name some modern practices as eugenics – and don’t

How this failure to name eugenics – and then condemn it as such – has resulted in a growing acceptance of renewed efforts to “better humankind”

An article on Germany’s renewed efforts to document Nazi-era medical experimentation and murders of disabled people came out recently without ever mentioning the word eugenics. Published on January 5, 2017, the American Association for the Advancement of Science’s Science Mag titled the piece “Germany to probe Nazi-era medical science.” The phrase “medical science” is too kind for murders rooted in a eugenics movement – and eugenics is not “medical science.”

I am pleased that Germany is doing a probe and that this is getting coverage in a science magazine with such detail, as eugenicists claimed scientific and medical evidence as their rationale. I am less so that they didn’t name eugenics. The article’s word choice got me thinking about eugenics in the past and modern eugenics. If you don’t name eugenics as such, it’s that much harder to recognize today.

Many people I know agree eugenics was a movement that happened in history, and name it in articles and other writing. But I have not seen as many people discussing eugenics practices happening in recent years and today. As a society – with some exceptions – we don’t call many actions eugenics or discuss the perils of eugenics practices occurring in them.

  • We don’t call it eugenics when prenatal testing in order to avoid having disabled children – particularly those with Down Syndrome – happens.
  • We don’t call it eugenics when disabled people receive the recommendation that they should not have a child because they have a disability.
  • We fail to discuss eugenics beliefs behind the removal of children from disabled parents on the basis that they are “unfit to parent” due to disability.
  • We don’t call it eugenics when many states still have sterilization laws on the books and when Buck v. Bell has never been overturned in its entirety.
  • We don’t call it eugenics when disabled people are still sterilized “for their own protection” in many countries, such as Australia. 
  • We don’t call it eugenics when discussions of “designer babies” that are “perfect” – meaning, to many, without any form of disability – occur.
  • We fail to discuss eugenics when talking about human genomics and gene-editing programs, such as CRISPR.

Yet these are rooted in eugenics, with the belief that disability is unacceptable and bad.

Joan Hume, a woman with a disability, wrote in 1995 about the “new eugenics,” prenatal testing, and having disabled children, “The message about disability is loud and clear: the prospect of having a disabled child is not acceptable for many prospective parents…. With the emphasis on “perfect babies” the message of the new technologies is that disabilities can and must be weeded out by eliminating foetuses with certain defective traits. This is clearly a modern version of the earlier eugenics perception that disability is inherently bad.”

And eugenics is, indeed, inextricably linked with the concept that disability is bad – regardless of whether the practices target non-disabled people or not. Eugenics tells people that disability and failure to conform to mainstream society’s expectations and rules are bad. Eugenics is ultimately rooted in  intertwining sets of bigotry: racism, sexism, classism, ableism, and more forms of oppression, using disability, “abnormality,” and “defects” to explain practices such as involuntary sterilization of any marginalized person.

The popular American eugenics movement of the Progressive Era past had eugenicists positing that intelligence and moral “defects” in the “feebleminded” people were passed down like Mendel’s peas generation by generation, using the growing field of genetics, the myth of the “feebleminded menace,”  and “fitter families” contests to make it plausible and acceptable to society. They twisted scientific concepts and used new scientific discoveries and theories of science to make it sound exciting to Progressive-era society – and they also capitalized on public fear and worry about poverty, race, immigration, and disability.

In many ways, it had legitimacy among many – eugenicists testified before Congress on immigration restrictions as “experts” in the years before and during World War II, many states had sterilization laws, and the Supreme Court affirmed a Virginia eugenics sterilization law 8-1 in 1927. In several ways, it did not. Some eugenicists’ careers in eugenics ended early due to the growing negative response from the public. Some prominent scientists decried eugenics as pseudoscience. And eugenicists in that era failed to see their ideas of sterilizing every “feebleminded” person fully implemented on a massive, national scale. 

Unlike the eugenics of the past, eugenics today – from what I’ve seen – is generally cloaked in scientific legitimacy, using real science like CRISPR and gene editing and genomics. Like the eugenics of the past, a lot of people still have fear and other negative, oppressive beliefs regarding poverty, race, immigration, disability, and more. Like the eugenics of the past, is is presented as exciting new scientific discoveries.  And that makes it just as terrifying, if not more.

(ETA: a good resource to follow is Genetics and Society, “a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies.”)