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theautismwars.blogspot.com
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| Kerima Çevik, photo courtesy the author [image: Gray haired Afro-Latina woman next to a windowshade, looking to the left.] |
[Content note: Contains descriptions of involuntary medical procedure, including sterilization, on Black and disabled people.]
I am trying to plow my way through Judith Newman's autism parenting book To Siri with Love: A Mother, Her Autistic Son, and the Kindness of Machines. It is slow, painful reading.
How can I explain my serious ethical concerns about yet another bestselling autism book that capitalizes on presenting the experience of disability from a parent's reduction of a disabled individual’s worth to how he makes his mother and those around them feel?
I can tell you that Newman's passage about looking forward to acquiring a medical power of attorney so she could involuntarily sterilize her autistic son Gus tainted the rest of the book for me. A vasectomy, she says. That passage has so much wrong packed into it that shocks, frightens and disturbs me as both a Black woman, and the parent of a nonspeaking autistic teenaged son of color.
I read what Newman wrote, and the years of harm to the black body—borne by my entire race—burst open like a septic wound. Combined with a year of escalation in harm to our people, it was just too much.
Newman writes about looking forward to being able to sterilize her child. This sent chills down my spine. The presumption that Gus might inadvertently father a child, and that this would be some sort of calamity, is both extremely ableist and demonstrates a clear disdain for any potential her son might have to lead the autonomous, inclusive community-based life that is the legal and human right of every disabled adult in our society.
Newman's assumption presents the disabled young adult as passive and inept, when in reality parents are responsible for ensuring that our children's primary life skills include sex education that might protect them from abuse and harm. This need, and the realities about sexual assault of disabled children and adults were featured in a recent NPR series, with statistics that tell a frightening story of helplessness and cyclic abuse because we insist on viewing our own children as having to be 'fixed,' rather than educated, and taught boundaries and self-protection.
Sex education for neurodivergent youth and adults exists. These courses teach students all they need to know about of their own bodies, setting and respecting boundaries, reproduction, self-care, and how to avoid harm in accessible language.
The author writes that she avails herself of access to autistic adults willing to be information resources, yet displays a lack of information about the existing resources for her son to navigate higher education and other aspects of life as a disabled adult. This contradiction in her book is confusing, as well as disturbing.
Gus might turn out to be a more patient, kinder, and understanding parent because he knows what it means to be disabled and subjected to maltreatment as a result. Gus may choose not to be a parent because he knows what it means to be disabled and subjected to maltreatment as a result. Gus is able to speak for himself. The choice, with supported decision-making if he needs it, should be his.
Forced sterilization is part of a larger nightmare of systemic abuse of the black body we've survived but can't forget. The practice of modern gynecology was built on the torturing of the black female body, without the benefit of anesthesia. J Marion Simms cut away at our ancestors' bodies, forcing slave women to hold down their fellow helpless enslaved victims while he did horrible surgeries on them. He brushed aside protests and outcry, by insisting that our women could not feel pain.
He is hailed as a great man. Statues stand in his honor.
Ms. Newman cannot feel what that legacy does to people. She blithely brushes it off in a great hat trick of compartmentalization, secure in her mistaken idea that all parents agree with her view of their disabled children. I beg to disagree. This parent does not hold Ms. Newman’s view of disabled children.
"Mississippi Appendectomy"
See, I can't forget what happened to Fannie Lou Hamer and the African American women of Sunflower County, Mississippi:
"Diagnosed with a small uterine tumor in 1961, Ms. Hamer checked into the Sunflower City Hospital to have it removed. Without her knowledge or consent, without any indication of medical necessity, the operating physician took the liberty of performing a complete hysterectomy.
"Three years later, as a leader of the Mississippi Freedom Democratic Party, Ms. Hamer spoke about her experience to an audience in Washington D.C. – telling them that she was one of many black women in her area that had been a victim of a “Mississippi appendectomy” (an unwanted, unrequested and unwarranted hysterectomy given to poor and unsuspecting Black women). According to her research, 60% of the black women in Sunflower County, Mississippi were subjected to postpartum sterilizations at Sunflower City Hospital without their permission. A number of physicians who examined these women after the procedure was performed confirm that the practice of sterilizing Southern Black women through trickery or deceit was widespread."Even if Newman claims she's changed her mind now, even if she chose to retract that vile passage from all future copies of her book, this random musing of Ms. Newman's has opened the floodgates to dangerous thinking. Involuntary sterilization is not an idea that should be recirculated in a time of resurgent racism, and vile ableism. It is not an idea that should reemerge in an environment where disabled parents must constantly fight to keep custody of their own children. It should not be introduced to parents as some sort of justifiable option, particularly couched in literary sarcasm or humor, in a nation where Buck v. Bell has not yet been overturned.
Though in the book Newman gives a partial checklist overview of the history of disability and sterilization, she never mentions Buck v. Bell. How is this possible?" Every parent of a neurodivergent offspring in America should know about Buck v Bell, the harm visited upon innocents because of it, and the potential harm that can still be done to others because of it. Here:
Buck v. Bell, 274 U.S. 200 (1927) is a decision of the United States Supreme Court, written by Justice Oliver Wendell Holmes, Jr., in which the Court ruled that a state statute permitting compulsory sterilization of the unfit, including the intellectually disabled, "for the protection and health of the state" did not violate the Due Process clause of the Fourteenth Amendment to the United States Constitution. The decision was largely seen as an endorsement of negative eugenics—the attempt to improve the human race by eliminating "defectives" from the gene pool. The Supreme Court has never expressly overturned Buck v. Bell.
Buck v. Bell allowed the forced sterilization of a neurodivergent young woman and her 52-year-old disabled mother. Buck v. Bell was used to justify thousands of forced sterilizations of disabled people. Then came the thousands of forced sterilizations of African American women and African American girls who were raped. That escalated into the forced sterilization of poor white males and females. Forced sterilization continues today:
"A 2013 report from the Center for Investigative Reporting found that in California between the late 1990s and 2010, hundreds of female prisoners were sterilized without proper state approval. As a result of the investigation, Governor Jerry Brown signed a law banning forced sterilizations in the California prison system."In 1986, Canada had its own Buck v. Bell moment. It was called the Eve decision, and it ensures forced sterilization doesn't happen there. Perhaps it is time to challenge and defeat Buck v. Bell in the U.S. Perhaps it is too late. But we should all be afraid because forced sterilization has already happened here, and continues to happen.
In her one unfortunate passage, Ms. Newman may have opened Pandora's box.
Here's what disturbs me the most: Our children aren't dogs or cats. They are human beings who need varying degrees of support. Now that you all know what was done to people of color, disabled people, and other marginalized groups, try to feel our distress. Don't treat disabled human beings, your own children, as othered creatures to be de-barked, spayed or neutered into compliance for our convenience. We know in our hearts this path is wrong. This is not something to daydream about or look forward to doing. This is a eugenics rabbit hole.
Literature shapes societal attitudes. What we write in the Internet age, particularly when content creators have as massive a platform as Ms. Newman has, can change the fate of thousands of autistic teens and young adults. We are their parents. Not their wardens, overlords, or owners. What we write can lead to events and public policy changes that might literally make their lives hell on earth.
We are living in a nation grappling with a chief executive who has recorded incidences of racially disparaging and ableist remarks, and who is trying to legislate based upon his personal biases. His remarks have enabled a harmful nationwide attitude shift, and as a result people are moving from vocalizing bigotry to acting on it. We have also seen escalated attempts to enact major changes in public policy, changes that may cause unprecedented harm to disabled people, people of color, and multiply-marginalized groups.
This means all parents authoring autism-related content must think about the consequences of what they write, before rushing to look for provocative vignettes for their bestsellers.
People took the right of consent from us for generations because they didn't like our color. They believed our race was 'defective.' All these unjust, stereotypical labels are being hung on our disabled children now. I cannot accept my son’s right to agency in his own life being taken from him and his people, because some author couldn’t imagine a world where her son has the competence to decide his own fate. It is her obligation as his mother to take the actions necessary to ensure he gains the skills required to gain such agency.
To me, seeing this book written from the perspective of white privilege, yet much-lauded, and hailed as witty, honest, and moving, is heartbreaking.
But unlike Ms. Newman, I won't generalize and assert that other parents in the autism community agree with me.
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Resources:
The Sexual Assault Epidemic No One Talks About
https://www.npr.org/2018/01/08/570224090/the-sexual-assault-epidemic-no-one-talks-about
The Negro Project
https://www.nyu.edu/projects/sanger/articles/bc_or_race_control.php
Literal Silencing
http://www.autistichoya.com/2013/09/literal-silencing.html
Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children
https://www.ncd.gov/publications/2012/Sep272012
Buck v. Bell
https://supreme.justia.com/cases/federal/us/274/200/case.html
https://www.democracynow.org/2016/3/17/buck_v_bell_inside_the_scotus
The Eve Decision: Why Forced Sterilization is not a fear in Canada
(with thanks to Emma van der Klift)
https://cic.arts.ubc.ca/the-eve-decision-1986/
Authoring Autism
https://www.dukeupress.edu/authoring-autism
Professor Melanie Yergeau's book addresses the ways literature is used to present stereotypes that dehumanize autistic characters, thus perpetuating structural ableism.
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