Via WA No Modern Asylum:

From my friends in Washington state:

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

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

So what is to be done?

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

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

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

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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).

#IAmAPreExistingCondition

Rooted in Rights is putting together a video project, #IAmAPreExistingCondition, as a campaign to ensure the Affordable Care Act remains law.

You can submit your YouTube video through this form until May 10, 2017. You should think about whether you want all this information out there before doing it, though.

Click here for my video with CC – there is also a transcript. Closed captions should begin automatically when you click play – if they don’t, click the CC button.

Transcript of my video:

My name is Kit Mead, I’m from Takoma Park, Maryland.

Um, I’m autistic, I have multiple mental health disabilities, I am getting tested for and will probably get a diagnosis of Ehlers-Danlos Syndrome, which is a genetic connective tissue disorder. I also have ADHD and a couple of other things.

Without health care coverage for pre-existing conditions, I wouldn’t be able to, like – my psych meds would probably go way up, and they’re pretty expensive, and once I have the diagnosis of Ehlers-Danlos, I plan to start working on stuff for that like physical therapy and anything else my doctors recommend. And of course, living with a chronic illness just means a lot – a lot more expenses generally, and I wouldn’t be able to get coverage for like, any of it.

Because of this, I would tell my legislators that – vote no on the American Health Care Act. A bill – legislation that takes away healthcare for 24 million people is not health care coverage. It’s not protecting the people who need it most. And therefore if you vote for this bill, you are choosing to, you know, basically let millions of people die, so, vote no.

I am a pre-existing condition.

 

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.

A history of progressive ableism that remains today

For clarity: I know that other progressive activists do great work. This is an anti-ableism post. It should be interpreted in this manner rather than as anti-progressive. 

Introduction

Too often, progressives use ableism to accomplish their goals. I do not mean just using some words that many disabled people consider offensive.  I mean things like advocating for ableist gun reform laws. I also mean things like attributing people’s worst traits to mental health disabilities, like people do with Trump.

In the 20th century, progressives gained momentum. Progressives of this time were not the same as they are today, but the ableism is still around.  Then, the cause to rally around was eugenics. I am providing eugenics as a historical example of progressive ableism – and will point out how it still lurks in undertows of thought.

Historical example: The early 20th century and Progressive Era eugenics

Eugenics was a movement that gained some level of popularity in the early 20th century (and still continues in modern forms today). Supporters of eugenics wanted to prevent the procreation of the “unfit” and promote “better breeding.” Eugenics was popular with progressives, including reformers and activists, of the early 20th century.

The Eugenics Record Office (ERO), intended to serve as a hub for American eugenics research, was financed at one point by the Carnegie Institution. Teddy Roosevelt once wrote a letter to eugenicist Charles Davenport of the ERO about “degenerates” that said:

Farmers who permitted their best stock not to breed, and let all the increase come from the worst stock, would be treated as fit inmates for an asylum. Yet we fail to understand that such conduct is rational compared to the conduct of a nation which permits unlimited breeding from the worst stocks, physically and morally… Someday we will realize that the prime duty… of the good citizen of the right type, is to leave his or her blood behind him in the world; and that we have no business to permit the perpetuation of citizens of the wrong type.

A reformer included Victoria Woodhull, a suffragist known for being the first woman to run for president (in 1872). Another was inventor Alexander Graham Bell. Several groups of feminist reformers, including the National League of Women Voters, had eugenics-based legal reform as part of their goals.

Stop making me have to defend insidious people from ableism

Bigoted actions and words from Trump are the result of bigotry. And bigotry is not a mental health disability, though people with mental health disabilities can also be bigots. We are people and vary in thoughts and opinions. But I’d really like prominent progressive activists to acknowledge this and stop making the case for Trump being crazy. That way, people with mental health disabilities won’t face as much ableism. And I won’t have to keep defending insidious people from ableism. 

I defend even people I loathe from ableism because public figure he may be, but attributing bigotry to disability hurts all people with mental health disabilities. And I do it also because when progressives pull out the “But no sane person would do that!” or “Trump is crazy!” lines, this is what they are saying:

Only crazy people can be responsible for such vile acts.

It’s the line of thinking that mental health disability must be responsible for acts society can’t explain, acts society considers terrible. The unintentional undertones of this speak of eugenics to me. Eugenicists of the past posited that many people, especially marginalized people, had increased rates of poverty and crime due to mental and moral “deficits.”

Today, mental health is blamed for everything, from mass shootings to having a poor moral compass – and Donald Trump’s actions and bigotry. Right-wingers and the GOP are the party of eugenics themselves, for sure, and I find that loathsome. But progressives should stop blaming mental health as they oppose damaging policies and actions.  

Related Posts:

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

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.