I slow danced with Patti Smith. She was eight feet tall
and very soft. I was only soft.
Why you? The dance turned me out
into a hill. A long lawn for drinking on
pinned with white beads of tourists.
I was the only mother and the only freak
and had to get back. Not a soul here
was offering me, my loves, anything.
I’m an ant–yes–who doesn’t want to hurt
before the sun goes out
I’m why I stopped my sound
to you and took my leaf and legs from you.
Did you ever get the feeling that you don’t belong
Said, t-teacher in the classroom I think there’s something wrong
But your desks are too heavy and your walls are too white
Your rules are all wrong and it’s either run or fight
But I’m still running, I’m still running
Sleater-Kinney, “What’s Mine Is Yours”
My dad is an Episcopal priest, and I remember him telling me about attending an ordination of his peers while he was a seminarian in New York City in the early 1970s. When the Bishop asked the candidates for ordination to rise, not only the men who had recently graduated from seminary arose, but so did the women. At the time, only the men were officially allowed to be ordained, so the women’s rising was an act of protest. My dad told me that at the time, he was irritated that the women would disrupt such a sacred occasion to make their protest. How rude! However, as the years passed, he came to understand that this protest, however socially inappropriate it seemed at that time, was a great and necessary action that led to women becoming priests and bishops of the Church.
This past week, another brave woman, Jennicet Guttiérez, a trans woman of color, dared to be perceived as “rude,” to speak out about our own government’s human rights abuses of immigrant trans people, thereby disrupting President Obama’s remarks during a Pride celebration at the White House. President Obama’s response was to scold her at length about how she was not adhering to the expected social-behavioral norms of a guest “in my house,” whose purpose is, if I’m understanding correctly, to eat “the hors d’oeuvres,” drink “the booze,” just be grateful for the invitation, and shut up like a good girl. Meanwhile, with Vice President Biden at his side, grinning and backslapping gamely, enabling the scolding like some kind of frat boy, the President also had some other helpers in the crowd–white cis gay men shushing, or worse, booing at Ms. Guttiérez, and some even trying to take nonconsensual selfies with her as if she were a spectacle for their entertainment. President Obama did nothing to try to counter the actual rudeness–the racist-transmisogynistic cruelty–of his other guests, which would in fact have been a very appropriate use of his authority at that moment.
Expected behavior. “Suzy, you are not displaying expected behavior,” is a familiar kind of Umbridgian phrase to neurodivergent people. It is not uncommon for this phrase, or alternatively, “You are being socially inappropriate,” to be used abusively against neurodivergent kids, particularly in school settings. For example, an Autistic kid might be having yet another meltdown or shutdown because of continual sensory overload–because the school environment is crowded, has bad acoustics, and is thus inaccessible to them–and, instead of being offered gentle, calming support, be scolded for their meltdown in the name of “unexpected behavior.” Or an Autistic child might be stimming while at school–flapping their hands because it is both a joy and release of anxiety–and be scolded for that because “socially inappropriate.” In either case, neurotypical social norms are privileged over the well-being of the neurodivergent child, all because “the house” and its social-behavioral norms are assumed to belong only to the neurotypical. If your very being means you cannot play by the rules of the neurotypicals in charge, you may even be thrown out altogether (which actually does happen to neurodivergent people in our education system and in many other settings).
Getting thrown (or scolded or booed or “counseled”) out of a privileged institution for daring to honor your own and others’ marginalized humanity over questionable social rules, as Jennicet Guttiérez did, is not shameful. It may be deeply traumatizing, which is also important to consider before attempting a conscious act of rebellion, but honorable it is and shameful it is not. Honorable because it may well end up being one step towards your own and even towards your marginalized community’s liberation. What is deemed socially inappropriate today may be embraced as socially essential tomorrow.
King, of course! Or . . .
The word fool does mean jester too, and with its more contemporary, ableist shadings, seems ripe for neuropunk re-appropriation, so let’s begin.
I’d rather be the fool. And I hope you you’d rather be one with me, fellow fool.
What do fools do that kings cannot? Or at least, not so well.
A king might put on a vanity play starring himself, and all his subjects will roar when he jokes about what sad, ugly arses they are.
(That is in fact the entirety of the joke: that they are sad, ugly arses.)
But the subjects’ roars are lies. They just don’t want him to whip or to kill them.
Fools, though, dance at–no–on the feet of kings, and sing about what stinks beneath the velvet robes and behind the many-paneled doors.
What stinks, why it stinks, how it stinks, how much it stinks . . .
A fool’s songs bust open windows and signal more fools to the gates.
Fools have no idea what’s going on, though, because . . . fools.
(Fools know entirely what’s going on, and make sure everyone else who needs to know it knows it too.)
A fool’s voice is a stripper.
A fool’s voice is an organ.
A king’s voice is a bludgeon.
A king’s voice is, at best, a whining saw.
(He can only ever save the bells and glitter in his voice if he dies a prince.)
Bells and glitter are the things a fool wears on her body.
They might also be the first things she flings on the fire when the castle burns.
Or not. Her choice.
When the castle really begins to burn, a fool only laughs at her own wounds, not at yours.
(A fool knows when to work with silence.)
Fools roll their way together out of the fire, singing. Foolishly alive.
They bring the king with them, if he’ll be a fool.
So will you be a fool?
I have some questions after scrolling through picture after picture of young white-coated medical students participating in the #WhiteCoats4BlackLives day of protest on December 10, 2014.
First, what does it mean for any given white person to “die in” as protest against racist police brutality? What does it mean for a white medical student in particular to “die in” among an orderly, as-if-charted sea of “white coats,” so many of them containing white bodies?
Are you as white medical students laying down your metaphorical lives for your Black patients’ lives, and more importantly, will you, as you move forward in your work, dedicate your professional lives to those of your Black patients?
Will you place conscious, abuse-preventing, community-health-promoting limits on your own white and professional privilege, particularly that which you hold in relation to your Black patients who are disabled or chronically ill? Will you support the agency of Black people over their own minds, bodies, and well-being?
How exactly will you put your own gifts and skills to use in service to sick and disabled Black people, including in ways that both prevent and combat racist, ableist police brutality? Is your white coat protest a promise only to engage in meticulous medical science during working hours, or is it a promise to engage and serve the complete humanity of your profession, even when you must risk “looking bad” to racist, ableist colleagues and superiors?
And this is my most important question of all, because it touches upon what may most be in your power as a doctor: will you work consciously and consistently to dismantle racism and ableism within yourself as a white doctor and within your traditionally white supremacist, ableist institutions, so that you “do no harm” to your Black patients—new harm to scar tissue older than the Tuskegee “experiments,” and not entirely dissimilar from the brutality you are protesting? What exactly will you do through your medical practice to repair the Black community’s deeply-rooted and valid mistrust of the healthcare system?
I ask you these questions not because I have all of the answers to them, but because I want to make sure you are asking them of your own white privileged selves, and because I hope you will never stop asking yourselves these questions as long as you are caring for patients. I ask you these questions in acknowledgement of my own white privilege, as a neurodivergent (neurologically and psychiatrically disabled) woman, and as the mother of a white Autistic son. My son and I both, because of white and income privilege, have found doctors and other practitioners who provide us with respectful care, and the best care possible, given the limited tools currently available to them.
In my experience, here is what respectful care looks like when one is disabled: it begins with practitioners who, first, listen carefully to what you have to say about your own mind, body, experiences and goals; then, explain to you clearly their recommendations for how they can help support you; and finally, before implementation and partnership, ask you if their plan sounds like something you can reasonably participate in, if it is truly the help you are seeking. And yes, this is the respectful approach my son’s practitioners take with him, and he is “only” twelve-years-old. (It did take some trial and error to arrive at the doors of such wonderful practitioners, but, thankfully and finally, we did, which has resulted in significant improvements to our health.)
However, as a disability activist, I spend much of my days in conversation with disabled friends, many of whom are people of color, and whose incomes and other matters of circumstance do not always accommodate choosing one better (i.e. culturally competent and less racist and/or ableist) provider over another. If I’ve learned anything from these conversations, it is that the overall consideration, the centering of his agency as a disabled person that my son enjoys as a 12-year-old white Autistic boy, is not the norm for Black disabled people, whether children or adults.
I have learned that low quality and even abusive “care” can be so traumatizing that some Black disabled friends steer clear of medical care almost entirely, even while they are cognizant that the adverse effects of systemic racism on their bodies and minds means an even greater need for the best possible healthcare. Poor interactions or lack of interaction with healthcare providers are reflected, for example, in tracking by the Office of Minority Health, which found that, only 8.7 percent of Black adults, versus 16 percent of white adults, received treatment for “mental health concerns” in 2007-2008, and that only 6.2 percent versus 13.9 percent received “mental health related medications” in 2008. (Source: Mental Health America on “African American Communities and Mental Health.”)
Another 2009 study in JAMA, “Physicians’ Cultural Competency as Perceived by African Americans,” reported that, “African Americans receive a lower quality of health care than Caucasians even when access-related factors, such as patients’ insurance status and income, are controlled,” and added that, “Cultural barriers and biases on the part of healthcare professionals may contribute to lower quality of services. Specifically, studies have found that when compared with Caucasian patients, African American patients report lower quality interaction with their physician. This lower-quality interaction may be due lack of cultural competency by the physicians.”
As Leah Harris illuminates in her December 16, 2014 Truthout op-ed, “Connecting Police Violence Against People of Color and People With ‘Mental Illness,'” medicine’s “lack of cultural competency” or simply racism regarding Black patients manifests in everything from insufficiently “trauma-informed approaches,” i.e. treatment that proceeds without awareness of Black-community-specific traumas and how these affect health, illness and disability; to the fact that Black psychiatric patients are “more likely to be subject to forms of coercive mental health ‘treatment,’” including “forced inpatient and outpatient hospitalization, and restraint and seclusion.”
In my multiply disabled family, we have had some of our own experiences with unnecessarily extended health struggles, or dealing with community, educational or medical authority figures who are ableist abusers; but, Black disabled friends have had far more, and of much more profound severity, plus traumatizing and even life-threatening interactions with police or other government institutions, neither of which have been part of my family’s experience so far.
In his August 24 Washington Post article, Harold Braswell cited recent studies by both the Portland Press Herald and New Mexico Public Defender Department which suggested that around 50% of the people killed by police officers are psychiatrically disabled. Disability activists, however, have discussed amongst ourselves the disappointing lack of studies that track the intersecting races and disabilities of victims of police brutality, which some of us believe, based on the ever-lengthening list of lives lost, would reveal a particularly severe danger of being abused or killed by “culturally incompetent,” i.e. both racist and ableist police, when the victim is both Black and psychiatrically disabled.
The fact that my family has received any disability diagnoses, thus related, appropriate care at all, offers us some protection from dangerous interactions with police and other authorities, and is yet another manifestation of our white privilege. Even the diagnostic models for our disabilities are centered upon whiteness. For example, research of young white boys remains the diagnostic paradigm for autism, and my son fits this paradigm easily. No one is certain how many Black Autistic or other “invisibly disabled” Black people are misdiagnosed or go undiagnosed and thus never even seen by any practitioners at all, how many people just end up instead being written off in school and beyond as “difficult,” then “bad,” then “criminal,” receiving violent, abusive treatment from police and the prison industrial complex, rather than potentially supportive or healing treatment from the educational and medical sectors.
What does proper, complete diagnosis and better medical care mean for a Black disabled person also hoping to avoid abusive, or worse, lethal, encounters with the police, as in the cases of Ezell Ford, Michelle Cusseaux, Kajieme Powell, Tanesha Anderson and Eric Garner, whose Black disabled lives the police neither remotely understood nor respected? Maybe it could mean some minimization of risk, given the still highly racist, ableist state of policing. If I, as a disabled person, am the most stable and in the best health I can be, have access to the best medications, therapies, assistive devices and services currently available, then I may have some additional power of body and mind when interacting with law enforcement to avoid or to de-escalate a potentially violent and brutal encounter.
Here, however, is where even very good future doctors must acknowledge one of your limits, which is that no matter how much excellent care you offer—care that is sought and accepted—your job not only as practitioners, but as anti-racist, anti-ableist public health advocates, is not done if the entirety of your protest message to the police about Black disabled lives is to lay your mostly healthy, non-disabled white bodies in white coats down on the ground in orderly white formations.
Because once you in your white coats have listened to your Black disabled patients well, and have provided them with the best possible care based upon what you have heard from them about their needs, have supported them in gaining the most possible power through improved health, they are still leaving your offices as Black disabled people, who will still encounter racist, ableist police, who may still target them for brutality. You must keep in mind that police and other authorities, no matter how well you do your job, are still unlikely ever to have listened to your patients as well or have comprehended their Black humanity and disability as I at least hope you have.
White medical students, beyond treating disabled and sick Black people with utmost humanity in your own medical practice, here is something you might consider doing the next time you protest racist, ableist police brutality. Instead of “dying” alongside your Black classmates—because, let’s face it, they, not you, are the ones at risk of this kind of death—why not stand back or take a seat, perhaps carrying messages that say not, “I Can’t Breathe” (Because Yes, You Can), but instead “Black Disabled Lives Matter,” or even, “Dear Police: Let’s Both Do No Harm to the Black Community.” One thing you can always do as white privileged people to dismantle racism coupled with ableism is to be white privilege speaking truth to white privilege—in this case, you to the police—as I am now speaking to you.
Please also keep in mind that when disabled people, and perhaps most especially disabled people of color, are confronted with that army of white coats, however well-intentioned your protest signs, we may also be reminded of how much power your profession, not completely unlike the police, has had over the most marginalized members of our community, how at times your profession has used it well, but, at other times, not so benevolently.
Given the medical profession’s own, ongoing history of harmful racism and ableism, you will have to earn your Black patients’ trust not just with displays, but with acts, whose effectiveness they can perceive tangibly in their daily lives. And please, finally, after the protests, talk to all of your white med school friends about listening—really listening—to all of their Black patients, including their disabled and chronically ill Black patients. The patients—the people—will always, in their own way, tell you what they need.
Some Recommended Resources for Future Doctors:
I am at the age where it no longer matters if what I say is “good” to you, whether in form or in content. What matters is that I say the thing that needs to be said. I will still work and work to say every thing I need to say and hope you need to hear. I will still work and work to find the ways, the forms I must use to say it. But someone else’s “goodness” matters far less to me than saying the thing, just finally saying it.
I will be brief, because really, how much should one need to say about keeping children alive and supporting their healthy growth into adulthood?
Parents, children are not here on Earth to conform to and suffer from your bigotries.
If you cannot love your disabled child or your LGBTQ+ child completely and as they are–without trying to “fix” them or worse–then the brokenness to be mended is within you, not your child.
It is therefore your responsibility either to mend what is wrong with you, or to allow safer, more loving adults to care for your child.
To Issy and all the other kids who are so distinctly, gorgeously yourselves, I need you to know that adults who have tried to make you feel bad or wrong, or have even hurt your body simply because of your disabilities or your gender or sexual orientation, are not being good adults.
When they treat you like this, it reflects entirely upon what bad adults and caregivers they are being, and not upon anything that is wrong with you or your disabilities, your gender or your sexual orientation.
In fact, your disabilities are beautiful. You are beautiful. Your gender is beautiful. You are beautiful. Your sexual orientation is beautiful. You are beautiful! So beautiful.
Finally kids, I wish you all the love, health, safety, and joy you could possibly need–even more than you need–both now and when you grow up.
Can a one-woman writer band be a thing? If so, mine will be called Inspiration Porn, and although I can’t play an official punk rock instrument (yet), as long as I have my keyboard, I will “pipe [or shred] to the spirit ditties of no tone.”
Why call my one-woman writing band Inspiration Porn? Firstly to honor Stella Young, a brilliant leader whom we in the international disability rights community lost far too young on December 6, and less than a week after the passing of another equally brilliant young disability rights leader, Ki’tay Davidson.
Stella wrote about “inspiration porn” here, and spoke about it here, at TEDx Sidney. Stella’s no-nonsense, comedic dispensing with any paternalistic romanticization of disability is very, very, if you don’t mind my saying so . . . punk.
Please do spend some with Stella’s words, and keep them close forevermore. I’d say thank you, readers, but really, it’s . . . thanks, Stella–not because you “overcame” disability, but because you totally rocked it.
I will soon be using this new space, neuropunk, to post poetry and prose, but before I do that, wanted to let readers know where you can find some of my recent work elsewhere:
“Ableism and Sex Abuse,” Interview By Alice Wong, Director of the Disability Visability Project
and “Ban Bossy and Imperative Feminism,” a piece for the Rhodes Project.
You can also follow me on twitter @riotheatherrr.
neuropunk