#AutisticPrideDay 2016

I am not sure how much I have to say; this is the third Autistic Pride Day I’ve written something for. It feels as though I have exhausted and extolled the mantras of pride, taking up space, having loud hands, and of having a neurodiversity community that will have each other’s backs as surely as we carry the weight of the dead, of injustice, and of trauma that can result in emotional whiplash among us. I will try anyway.

There is something to be said about the value of connection. There is something to be said about a group of autistic adults and self-advocates and activists whose previous generations are dead and lost, in institutions or just dead. There is something to be said about a group of autistic adults and self-advocates and activists whose future generations we try to teach neurodiversity and self-acceptance and self-advocacy to.

There is something to to be said about the pride we carry, that we carry as surely as we bear the pain of discrimination and the pain of things done to us. We carry it like the candles we hold up to the dusky, darkening sky on our Days of Mourning, lighting them together to build a torch. The torch has the power to light the way, or set fire to what we’ve built already.

The pride we carry can change things and people everywhere. The Lancet, a major medical journal, published an article on Autistic Pride. The Republic of Malta wants to build an inclusive rights agenda for autistic adults. California is shutting down its institutions for people with developmental disabilities. Maryland voted to end subminium wage for disabled people. All the Weight of our Dreams, the anthology by autistic people of color, has a webpage and is forthcoming. We had two Democratic candidates for president notice people with disabilities as a voting bloc and start supporting disability rights legislation. The FDA is taking comments on a proposed ban on contingent electric shock devices used on disabled students. There is a battle for the future of autism advocacy – something that previously would have been unheard of. More and more we’re creeping into mainstream publications like the Washington Post and other places.

Many of us are traumatized and a lot of us are scared. Many of us are in pain and many of us have doubts. Many of us have negative self-image and many of us are not sure how to move in this world. None of that has to preclude pride. To my autistic brethren who are there and talking about pride: remember that the torch we carry has the power to light the way, or set fire to what we’ve built already. And to my autistic brethren who don’t yet know how to be proud: I will wait for you, always.

 

The Real Tragedy of Eugenics and a Primer on Buck v. Bell

Many of the victims were, like Carrie [Buck], perfectly normal both mentally and physically–and they desperately wanted to have children.

-Adam Cohen, Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck

The tragedy of eugenics is not that it happened to ostensibly non-disabled people. The tragedy of eugenics is that it happened at all. The tragedy of eugenics is that people used the prospect of disability to justify it. The tragedy of eugenics is that anyone, disabled or not, lost their right to choose if they wanted children. They used the prospect of disability to justify sterilizing anyone they saw fit – disabled people, people of color, sex workers, women, low-income people, or a combination of those, for the most part.

Cohen is not alone in asserting Carrie Buck, the subject of the 1927 Supreme Court case Buck v. Bell, was mentally “normal.” Journalist Harry Bruinius discusses it in his book Better for all the World. Paul Lombardo has many words to say about Carrie Buck’s normality as well as that of her daughter Vivian’s in his book Three Generations, No Imbeciles. The Sterilization of Carrie Buck  by J. David Smith and K. Ray Nelson talks about Carrie Buck’s family being actually normal.

Cohen is not alone in therefore implying that there was a correctly targeted group. That Carrie Buck’s sterilization was wrong because she was “normal” and should never have been in the Virginia Colony for Epileptics and the Feebleminded. In one regard, he is correct. Carrie Buck should never have been in that institution. Neither should anyone else have been.

.  .  .

Carrie Buck was born in Charlottesville, Virginia, in 1906. Eugenics took hold as Carrie grew up. Her father Frank was dead, or had simply left – no one knew. Her mother Emma took to the streets and got put on charity lists to try and take care of her children. Emma may have had substance abuse issues with drugs. Emma sometimes went to having sex with different men to try and make ends meet. She had more children. A family called the Dobbses took Carrie from Emma when Carrie was three or four. Emma Buck eventually was put in the Virginia Colony. When Carrie was seventeen, the Dobbses’ nephew Clarence raped her. A pregnancy resulted. The Dobbses wanted to avoid scandal. They packed her off to the Virginia Colony as “feebleminded” after she gave birth to a girl, Vivian. Facts of the case were not observed. 

The superintendent chose Carrie Buck for a test case of Virginia’s new sterilization law. Carrie went before the board of the institution. They voted to sterilize her. Her appointed guardian filed an orchestrated appeal. It was not really on her behalf. The appeal traveled through all the court systems until it reached the Supreme Court.

Buck v. Bell was a devastating decision by the Supreme Court. The 8-1 decision – the only dissenting member Justice Pierce Butler – said that it was legal to sterilize Carrie Buck, a patient at the Virginia Colony for Epileptics and the Feebleminded. They said it was legal to sterilize people, mostly those in institutions, without their consent. It upheld the Virginia law that had passed three years earlier. Justice Oliver Wendell Holmes, Jr., wrote this infamous statement in the opinion: 

It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover cutting the Fallopian tubes. Three generations of imbeciles are enough.

Buck v. Bell was an injustice done to Carrie Buck. It would have been if it were proven today she actually had an intellectual or developmental disability. It was an injustice to the tens of thousands of people, mostly in institutions, who came after her. It was an injustice to the women in the California prisons who underwent forced sterilization as recently as 2014, and to the women who went before a Tennessee district court prosecutor who forced plea deals involving sterilization. Buck v. Bell has never been overturned in its entirety, permitting legal loopholes. People are still being sterilized today, in the United States and elsewhere.  It is not considered a priority to overturn Buck v. Bell in its entirety. State eugenics laws were not overturned until the 1970s and 80s.

Buck v. Bell reached beyond the borders of the United States. The Nazi Party cited it as justification for some of their war crimes. They drew upon American eugenic ideals. United States officials acted as the primary agents in prosecuting Nazi officials, doctors, and others. Despite its association with Nazism, eugenics is not dead. Nor is its height and prominence a distant memory.

.  .  .

I encourage you to read the following if you have access to them. Sources to think about, and sometimes critique:

Books that Cost

• The Nazi Connection by Stefan Kühl
• Better for All the World: The Secret History of Forced Sterilization and America’s Quest for Racial Purity by Harry Bruinius
• In the Name of Eugenics by Daniel Kevles
• The Sterilization of Carrie Buck by J. David Smith and K. Ray Nelson
• Imbeciles: The Supreme Court, American Eugenics, and the Sterilization of Carrie Buck by Adam Cohen
• Three Generations, No Imbeciles by Paul Lombardo
• War against the Weak: Eugenics and America’s Quest to Create a Master Race by Edwin Black
• A Century of Eugenics in America: From the Indiana Experiment to the Human Genome Era, editor Paul Lombardo
• Fit to be Tied: Sterilization and Reproductive Rights in America, 1950-1980 by Rebecca Kluchin
• Inheriting Shame: The Story of Eugenics and Racism in America by Steven Selden

Physical Archives

• The Carrie Buck archives at the State Library of Virginia (Richmond)

Resources and Articles that are Online/Free

• Maggie Lawrence, “Reproductive Rights and State Institutions: The Forced Sterilization of Minority Women in the United States,” Senior Theses, Trinity College, 2014 http://digitalrepository.trincoll.edu/theses/390 (PDF)
• Eugenics: Compulsory Sterilization in in All Fifty States: http://www.uvm.edu/~lkaelber/eugenics/
• Buck v. Bell Supreme Court opinion: http://readingroom.law.gsu.edu/buckvbell/94/
• Buck v. Bell Documents: http://readingroom.law.gsu.edu/buckvbell/
• Image Archive on the American Eugenics movement: http://www.eugenicsarchive.org/eugenics/list3.pl
• History of Forced Sterilization and Current U.S. Abuses: http://www.ourbodiesourselves.org/health-info/forced-sterilization/ 
• The Supreme Court Ruling that led to 70,000 Forced Sterilizations: http://www.npr.org/sections/health-shots/2016/03/07/469478098/the-supreme-court-ruling-that-led-to-70-000-forced-sterilizations
• Sterilization’s Cruel Inheritance:  https://newrepublic.com/article/130796/sterilizations-cruel-inheritance
• When California Sterilized 20,000 of its Citizens: http://www.zocalopublicsquare.org/2016/01/06/when-california-sterilized-20000-of-its-citizens/chronicles/who-we-were/
• Eugenics 101 (PDF) by me (Kit Mead) – note an error where I typed Virginia in 1907 instead of Indiana: https://drive.google.com/open?id=0B9AMSR-M7Vz1eXpFREwzOEc5N1E Also, Harry Laughlin received more like an a honorary degree than an award from Heidelberg University.

Me Before Ableism

This post is loosely tied to the new film Me Before You. It is a story of me before ableism (#MeBeforeAbleism– a hashtag that sprang up in response. But in some ways, this post has nothing at all to do with the film, insofar as it does not talk directly about it. There’s a good article here by Emily Ladau if you need a primer on Me Before You.

.  .  .

Me before ableism: not pure. Not innocent. Certainly not. But I moved through the world for quite a while not really caring how other people thought of me. I was happy to be alone, digging in the dirt with a stick and creating rich tales of a city for ants – and building it in the old roots of the pine trees with raisin boxes. Yes, I knew I was different. I had received the diagnosis of ADHD in the first grade. To me, all that meant was that things were vivid and bright and I could move fast and talk fast. It meant that I could create the most beautiful stories and sit at my desk at home and write story after story about Tabby the brown tabby spy cat. At 14, I was diagnosed as autistic.

I am not sure when not caring what people thought about me and how they treated me and how they told me I was weird changed. Maybe it was in the third grade, when I had sensory issues about sitting next to my best friend’s much younger sister and did not know how to say it properly before I had a small meltdown. My best friend’s parents shunned me for the duration of our friendship. Maybe it was sometime in elementary school when someone sneered at me, “I heard you have a behavior chart.”

I am not sure when I started trying to stop being myself and started trying to be impossibly good. This made me feel even more broken because I didn’t know how to be the “behaviorally perfect” child. School constantly overwhelmed me through much of my life – the loud and jam-packed hallways, the jeering students, the constant not having room to breathe, the bullying. The only places I found true refuge was in the art teacher’s classroom and sometimes in other teachers’ classrooms. I never understood why I couldn’t just stop interrupting in class, why I couldn’t stop lashing out at people who touched me, why everything was too loud and and impossibly crowded for me. I knew I sometimes scared people and that everything I did was fodder for cruelty. I set a bar too high for myself.

.  .  .

I never went through any abusive therapies. I still learned that the way I moved through the world was wrong to people. I still learned that I was too difficult. The kid on behavior charts at school. The kid who freaked out at everything. The kid who lashed out with little to no provocation. To the kids at school, slurs.

Despite, for some period of time, making efforts at this – I never stopped looking visibly disabled in some way. Now I have come into autistic culture and community and the broader neurodiversity and disability rights community, and I am trying to unlearn the damage ableism has done with the help of friends and community.

Already I am less ashamed of being visibly different. Already I am less ashamed of not ever being able to hide. Already I am learning how to help others with the same feelings of shame.

Already, I know (even though I thought I knew already) that I am undeniably – and not regrettably or tragically, but proudly – Autistic and disabled.

“end the stigma” and ableism in the same breath

They mention Adam Lanza. They always mention Adam Lanza. The mentally ill need treatment, they say. They’ll end up like Adam Lanza. End the stigma, they say. Talk about your mental illness! We can end the stigma by you sharing your stories and struggles. Then they mention Adam Lanza.

Treatment is important. No one has access to treatment. Treatment is code for institutionalization. People with mental illness are in jail a lot! Like the man in the tree, who should be hospitalized indefinitely – the solution to incarceration is more hospital beds, they say.

Someone lies down on the floor in the hospital. They medicate him. Someone gets forcibly medicated, restrained, made fun of, and mistreated in the hospital. No one cares.  The faceless professionals give you a sleeping aid, a paper-thin blanket and an anti-anxiety drug, sometimes more. They give you a paper cup with water to take the pills with. The pills will keep you safe, they say. There are more pills. There have always been pills. The side effects don’t matter, historically and now. But – end the stigma of being in the hospital! Hospitals are good for people. They are friendly places that only want to help. They help! They can keep people from turning into Adam Lanza.

Your hospital bills come in the mail. They charge you over a thousand dollars with insurance. If you don’t have insurance, well, good luck. They charge you for the psychiatrist. They charge you for the therapists. They charge you for the ER visit. They charge you for general inpatient stay.  There are a lot of bills. They send you another hospital bill every week.

You can recover, they say! Just try harder. Be compliant. Doctors know best. No self-directed services. You don’t know what’s best for you, they say. Recovery should be your goal. Recovery is the only thing worth trying for when you’re mentally ill. End the stigma, they say. Talk about recovery.

You tweet into the #MHM2016 hashtag with a post you wrote as a mentally ill person expressing displeasure at the focus on access to treatment. You get exactly one retweet and two favorites. No one else notices or engages with you.

The members of Congress consider legislation, H.R. 2646, that will slash funding for programs to keep you from being homeless and restrict programs that protect your rights. Forced treatment is more important than stable housing, after all. They mean you belong in a hospital. They mention Adam Lanza.

Family members write articles called “I am Adam Lanza’s Mother.” They are always talking about Adam Lanza and treatment. Treatment is important. No one has access to treatment. Treatment is code for institutionalization. The Protection and Advocacy for People with Mental Illness (PAIMI) programs made my child homeless, they complain, they could have gone to an institution instead!

President Obama makes remarks about the San Bernardino shooters being sick in the head. The Obama administration declares May Mental Health Awareness Month. May officially is on your blacklist now.