Literal Silencing

Trigger warning: Medical violence, abuse, ableism, profanity

Correction: The original version of this post stated that Kade Hanegraaf's surgery occurred at the University of Washington Hospital. The surgery actually took place at the University of Wisconsin Hospital in Madison, Wisconsin. Salon also published an article, quoting me actually, that contains more information from the surgeon.

Literal Silencing

Have you heard about Kade Hanegraaf yet? He's an autistic sixteen-year-old, who also has Tourette's, living in Appleton, Wisconsin, with his twin brother, Kyle, also autistic. And this week, the Wisconsin State Journal reported on a surgery forced upon him (link also has severe trigger warning) two years ago in 2011 at the University of Wisconsin Hospital that almost went unnoticed.

Almost.

One of Kade's tics is screaming.

His parents said of him, "It was absolutely horrific. We couldn't go anywhere." So they forced him to undergo surgery to silence him. To make him quiet. Good. Quiet. Good. Quiet. Good. Quiet. Good and quiet. Quiet and good. Good. And quiet. For them.

They made it about them. 

If screaming was a conflicting access need, there are other ways to address the issue than forced surgery. I've heard from other autistic people writing that they learned coping skills and ways to avoid some types of self-harming, for example, from other autistic people. Noticeably not from therapists, clinicians, or other professionals.

Was the screaming harmful to Kade? Did Kade want the procedure? Did Kade want to stop screaming? Even if the answers to these questions are yes, neither the news article nor the surgeon's published academic article (trigger warning on this article as well, and it's the full text as a PDF) mention anything whatsoever about seeking consent from Kade. 

(And yes, the surgeon, Dr. Seth H. Dailey, who teaches in the Division of Otolaryngology-Head and Neck Surgery, Department of Surgery, at the University of Wisconsin School of Medicine and Public Health. Despicable.)

They claimed the surgery was reversible. Who the hell knows? That may not be true, and even if it were, that doesn't justify performing surgery without the patient's consent.

The surgery was performed because Kade was an inconvenience to his parents.

...

...

...

I haven't done math in years, but the calculus seems to go a little like this:

Inconvenience + legally enforced power = medical torture

Solution: Justified.

...

...

...

This is torture. To invade someone's body in total violation of their bodily autonomy and perform nonconsensual, involuntary medical procedures on the whim of another person for what amount to purely cosmetic purposes.

But because Kade is autistic, anything goes. Anything is treatment. Anything is permissible. His body is not his own; it belongs to his parents. His life is not his own; it belongs to his parents. His very existence is a burden and must be dealt with accordingly. If he creates further inconvenience beyond existing, he can be, quite literally, silenced. He is not a human being with autonomy, agency, and the ability to communicate consent or lack thereof.

His communication doesn't matter. His parents did not choose to engage in communication with their son. Instead, they chose to physically, medically, pristinely, callously, clinically cut out his voice from his throat.

...

...

...

This is morally reprehensible. It ought to be appalling to anyone with even the most minute conscience or shard of empathy for fellow human beings. It is horrific and hideous. It is the epitome of selfishness on the part of the parents. This is an outrageous violation of human rights and bodily autonomy, and there is no conceivable justification for any of this.

But if we can be silenced in public discourse, erased from academia and scholarship, segregated in special education classrooms and residential treatment centers and institutions, hidden in sheltered workshops, and objectified as passive recipients of services and treatment and a future cure for who we are...

Then why not literally silence us?

Why not?

...

...

...

Assault the subaltern, those who have no position whatsoever to challenge structural power, because you know we can't fight back. We must submit, quietly, without protest, to the surgeon's hands, to the parents' unilateral, selfish decisions, because we have no agency, we have no feelings, we have no choice, we have no ability to make a choice, we have no self, we have no being, we have no voice, we have no humanity, we are nothings, not-humans, simply occupying space and lucky if we are ignored as we usually are anyway.

It's when we're noticed that it's dangerous, because if we're noticed, we can be stamped out of existence, and I mean that deathly deathly deathly literally because our lives are disposable. (even especially especially especially by doctors)

I think about Kade in that operating theater and I want to cry but I already spent part of yesterday crying and I've already overused my quota because I'm not a Real Person so I don't get to cry...

And I wonder if it felt like this?

Course you gotta be strapped down and your head put in one of those things and bright lights white walls blah blah. Arms bound with thick leaden cloth. Spread like an angel. Keiya is compliant. She's always been a patient like that, so good so good, with the nurses and caregivers cooing at her like an obedient pet. 

The doctor motions. Keiya spreads her arms wide. 

I, too, am an unclaimed colony.

(Meda Kahn's "Difference of Opinion" has got to be some of the best fiction I've read about an autistic character. Part of the reason for "best" is probably "realistic." Not just with the autistic, but also what happens. How Keiya is a thing to be controlled, a thing to be made submissive, a thing to be made compliant, a thing that has to be fixed, to have an adjustment, if it ever lays claim to self.)

...

...

...

It's obviously not harm if it's done to an autistic. Autistics aren't people. Doctors can't harm autistics; everything is for their good society's good their parents' good everyone's good, good, good, good.

Autistics are things objects subjects problems burdens threats fantasies fictions creatures animals things things things things things not-people things things things things things not-people things things things things things.

...

...

...

But if we have no voices why not cut out the vocal cords because we have nothing to say we've never had anything to say we'll never have anything to say and even if on the off-chance we say something it means nothing nothing nothing so no problem, whoop-dee-doo, cut out them vocal chords and yay, problem solved for those Good Patient Saintly Normal People putting up with the burden of disabled existence.

Silence is their reward.

...

...

...

You can reach the surgeon at dailey@surgery.wisc.edu. Be nice. After all, he's a Person, capital-p, and we're just manipulable, pliant things.

I'd say, fuck all of the people involved, but my voice isn't a real voice can be silenced all the damn time doesn't have to be listened to doesn't have to exist doesn't exist doesn't exist doesn't exist doesn't

Psychopathy: Racism and Ableism from the Medical-Industrial Complex

Trigger warning/Content: Disability-related slurs and other ableist language, mention of rape, racism, and ableism.

Edit: In the original post, I neglected to ntion the connections between Antisocial Prsonality Disorder and Cnduct Disorder and Oppositional Defiant Dsorder, nd structural racism, sxism, and ableism. typos b/c eited from pphone.

Psychopathy: Racism and Ableism from the Medical-Industrial Complex

When we commit to examining our language and our ideas and deconstructing the ableism we find in them, we must make a full commitment, no partial or half-hearted commitments allowed. When we stop using "autistic" and "retarded" as insults, when we realize the urgent need to stop scapegoating mass murder and rape on "mental illness" and "emotional instability," when we learn to stop referring to our political opponents as "blind," "deaf," or "crippled" in their ideologies, we must also critically re-examine our use of the psychopathy label.

This constructed term of art does not in fact refer to an accepted diagnostic label in psychiatry or psychology. In the recently-replaced DSM-IV (the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders), the closest label was "Antisocial Personality Disorder," a diagnosis that still exists in the current DSM-5. The DSM-5 also contains the newly created diagnosis of Conduct Disorder. The diagnostic criteria for Antisocial Personality Disorder and Conduct Disorder come perhaps the closest to the lay definition for psychopathy that is usually intended when the term is invoked.

The lay definition for psychopathy typically goes like this:
Someone who has little or no empathy for other people and no real control over their behavior.

Psychopathy is usually invoked when referring to either

1. violent people, such as murderers, serial killers, school shooters, terrorists, or rapists, either by the mass media or by legal professionals, including prosecuting and defense attorneys, judges, sentencing advocates, probation and parole officers, and corrections officers and prison guards
2. other disabled people, such as autistics, people with mental health or psychiatric disabilities, or learning disabilities (though usually when a person in this group has been accused of or formally charged with a crime)
3. members of oppressive classes, such as wealthy people, cisgender men, or abled people, and especially when the member of the oppressive class is in a position of political power in addition to apolitical structural power

Yet, as noted before, psychopathy is not even a medical or psychiatric diagnosis. It doesn't exist in the DSM-IV nor does it exist in the DSM-5, and as much as I hate lending any further credence to the medical-industrial complex's state-sanctioned and socially-approved authority, this is important to recognize. Even the medical-industrial complex does not officially recognize psychopathy as a diagnosis. 

On the other hand, Antisocial Personality Disorder is recognized as a psychiatric diagnosis by the medical establishment. And who are the people typically diagnosed with Antisocial Personality Disorder? They are overwhelmingly poor students of color who frequently have other disabilities. Antisocial Personality Disorder, the diagnostic category that comes closest to approximating the lay definition of "psychopathy," is a tool for criminalizing poverty, blackness and brownness, and disability. It is the diagnostic label to legitimize non-compliance as a mental health problem.

Refusal to take psychiatric medications? Non-compliant. Doing poorly in math class? Non-compliant. Stimming in public? Non-compliant.

If you are non-compliant, you are anti-social. You are mentally ill. You have Antisocial Personality Disorder. You are a psychopath.

The language of pathology, of mental illness, of disease, of disability, has long been used to reinforce existing structural oppressions like racism, classism, sexism, heterosexism, binarism, cissexism, and ableism. I spoke at UC Berkeley this past Friday on the need to recognize and move beyond ableist metaphor. Ableist metaphor is all-pervasive in public discourse, in academia, in grassroots organizing, in progressive and radical movements as well as in conservative, neoliberal, and nationalist movements. Ableist metaphor draws on the language of disability to characterize, to denigrate, to attack, to rhetoricize, to politicize -- and it does so based on the presumption that deviation from typical thought, movement, emotional processing, communication, bodily/mental functioning, learning, remembering, sensing is evidence of defect, deficiency, disorder, and ultimately, moral failure. And if this is so, then it is certainly justifiable to refer to one's political opponents as blind or deaf to progressive ideas, or to refer to structures like capitalism or anarchy as social diseases, or to refer to violence visited either by individuals or oppressive systems as evidence of psychopathy.

To use psychopathy as the lens through which one views systemic or individual violence -- the violence of capitalism or patriarchy, for example, or the violence of a single serial killer or rapist -- is to reinforce the structural power of the medical-industrial complex, and to do so at the expense of disabled people, poor people, and people of color who have been victimized by the labels of non-compliant, anti-social, and psychopathic.

To defend the use of this term as medically accurate is to imply that you have knowledge that an individual has been medically assessed as and diagnosed with Antisocial Personality Disorder or Conduct Disorder, which in itself, cedes control and power to the psychiatric establishment and the medical-industrial complex. It presumes personal medical knowledge, it reinforces the creative fictions of these diagnostic labels, and it enables the systems of violence that use the language of disability to pathologize and ultimately, to dehumanize.

Be precise in your language, and say that oppressive structures are violent and manipulative. Say that those who abuse their structural positions of power act with reckless disregard for other human beings. Say that they are callous and unabashedly wielding the power that comes with their privilege.

But don't call them psychopaths.

I've experienced enough ableism in my life to last me several lifetimes. I don't need fellow radicals feeding into ableism.

People's Coverage of Issy Stapleton's Story

Trigger warning: Discussion of violence against disabled people, murder of disabled people, mention of rape, ableism, and ableist rhetoric about violence. 


Note: I noticed it's actually Issy (with a y). I wrote Issi (with an i). I apologize for my inability to spell.

__________

This is from a letter that I wrote to an editor of People magazine who is also a Georgetown alumn:

I am currently writing regarding People's coverage of the Issy Stapleton case. Issy's mother is currently facing charges of attempted murder, and is being held without bail in the case while Issy is hospitalized with injuries sustained during the attempted murder.

The magazine currently on news stands across the country contains a blurb on the cover that reads, "Autism, Violence & Despair: A Mother's Breaking Point." It breaks my heart and those of so many people in the autistic and disabled communities to continually see such rhetoric in the news, in popular media, and in public discourse.

It is incredibly common for journalists and policymakers alike to assert directly or imply through their reporting and language that when parents kill or attempt to kill their disabled children, it is because the child was a burden on the family, because the child didn't receive services -- any reason other than that the parent decided to harm their child. 

The disparity is very striking when you read coverage of killings and attempted killings of non-disabled children by their parents. Right or wrong, headlines decry such parents as monsters and their actions as evil. Yet when the victim is disabled, as in Issi's case, we are urged to be sympathetic to the aggressor rather than to the victim. The media so often plays directly into this attitude by reporting on all of the reasons that the parents were supposedly overwhelmed and stressed and therefore justified in harming their children.

These cases happen all the time. They are not novel or isolated. They are connected by a powerful and pervasive set of ideas that form the public attitude toward disability -- that disabled people are burdens on society and their families, that disability means less quality of life and less ability to be happy, that it is better to be dead than disabled, that when disabled people are murdered, it is out of mercy and love, and it is our lives that are tragic and not our murders.

These stories should be talked about. We don't want our victims to be forgotten. But I am continually appalled and profoundly saddened to see that the pattern of reporting about these cases remains the same -- always offering justifications and excuses for murder while suggesting, horrifyingly, that if I object to this type of coverage, I am somehow lacking in empathy. I think it is not unreasonable to believe that victims of violence deserve empathy, but the kind of rhetoric exemplified on the cover of People right now only serves to constantly reinforce that I and people like me are not in fact worthy of the same consideration as non-disabled victims of murder and other types of violence. Instead, it is the perpetrators who should receive sympathy. 

Only this week, yet another case following the same pattern has hit the news. Two children, Jaelen and Faith Edge, were found dead after their mother killed both of them and made an apparent attempt at suicide. One of the children was autistic, and much of the reporting around this case too has fallen into the same old pattern of blaming autism and the supposed burden of living with an autistic child as the cause behind the violence.

I cannot go more than a few weeks without hearing of another case in which a disabled person -- child, youth, or adult -- somewhere in the world has been murdered, raped, or assaulted because of the attitude that disabled means less than. The media has a particular power to shape and influence rhetoric, and therefore ideas and attitudes. With this power comes great responsibility. I urge you to do everything that you can to combat this insidious and deadly trend in popular news reporting.

We deserve better. We deserve nothing less.