The Kennedy Institute of Ethics was founded in 1971 with support from the Rose and Joseph Kennedy Foundation, inspired in large part by the Foundation’s ongoing commitment to advancing the rights of the disabled. This year’s Conversations in Bioethics topic aimed to celebrate that founding vision of a world where the voices of the powerless are made powerful through thoughtful reflection and theory-driven advocacy, and it dives deep into some of the most complicated and interesting questions in disability ethics today.
On February 2, 2017, we convened a campus-wide conversation on disability, the fourth of its kind put on by the KIE and the first to be live-streamed and to accept questions for the panel via Twitter.
A full gallery of student work drawn from multiple Georgetown classes preceded a panel discussion in historic Gaston Hall at which no fewer than six expert panelists reflected on their personal, professional, and theoretical intersections with the topic of disability. You can watch the panel in its entirety here.
Time ran out at the packed session before all audience questions could be answered. Panelist Lydia X. Z. Brown, founder of the blog “Autistic Hoya,” widely read due to its no-holds-barred approach to disability justice, neurodiversity, intersectional activism, was kind enough to sit down after the event and share thoughts and replies to some of the missed inquiries. They are posted in full below.
Content/TW: Discussion of violence, including police violence, institutions, and sexual violence.
Dominick Evans (@dominickevans): can Lydia talk more about police brutality, disability, and race and how justice is rarely served for crimes agains disabled POC?
Lydia X. Z. Brown (@autistichoya): From numbers estimated by Talila Lewis at HEARD (Helping Educate to Advance the Rights of the Deaf), based on their extensive data collection and work with Deaf and Disabled community, somewhere around 70% of all people killed by police are Deaf or Disabled, and as many as 80% of all people incarcerated are also Deaf or Disabled. That means that those most likely to be impacted by police violence and mass incarceration are those who are Black, Brown, Latinx, or Indigenous and Deaf or Disabled — even more so if they are also Queer or Trans. Those horrifying numbers reflect the deep racism and ableism in the criminal injustice system — racism and ableism that cannot be untangled.
For example, Neli Latson was a Black autistic young person waiting outside his local library for it to open in February 2010, only to have a passerby call police on the assumption that a tall Black teenager was a violent criminal. After police confronted him demanding his ID, and Neli attempted to walk away in a panic, the situation escalated to a fight and a beating. Neli was charged with felony assault on an officer, and was initially sentenced to ten and a half years in prison. He served years in Virginia prisons, including over a year in solitary confinement. Meanwhile, it took until the fall of 2014 before a national autistic-led organization issued a statement decrying Neli’s conviction and subsequent abuse. In the entire time leading up to his early 2015 conditional pardon, the public discourse about Neli’s incarceration relied on the ableist narrative that disabled people don’t belong in prisons because we actually need specialized residential treatment instead — ignoring the reality that we already know, which is that disability institutions are just incarceration with a slightly nicer face.
Most of the disability community celebrated and forgot about Neli when the Virginia governor issued a conditional pardon — and Neli was shipped, indefinitely, to a residential institution in Florida run by a for-profit company with a decades-long record of unchecked abuse, including deaths of Black disabled people in their “care.”
More recently, in summer 2015, a story hit the news involving police violence targeting a Black behavioral therapist working in a group home (Charles Kinsey), and a Latinx autistic person (Arnaldo Rios-Soto) living there. Charles and Arnaldo had been out for a walk, where Arnaldo was known to the neighbors as any of the group home residents would have been. Someone called police reporting suspicious individuals — unquestioningly due to racism — and when police arrived, video caught images of Charles lying on the ground with hands in the air begging the officer not to shoot. After the officer did (nonfatally) shoot Charles, the police chief claimed that the real target was Arnaldo, who the assaulting officer believed posed a danger to Charles.
Most outcry emphasized that Arnaldo should not have been scapegoated because Arnaldo is autistic, and therefore not a threat. This response also exemplified ableism and racism combined, since the police chief could only make this fantastic claim as a failed cover-up of the officer’s anti-Black racism, if relying on both ableism and racism against Arnaldo as a clearly Brown Latinx person. After the story faded from news and memories of most, Arnaldo was locked in a psychiatric ward and deemed too “damaged” (i.e. traumatized from nearly being murdered and witnessing a care worker nearly murdered) to return to the group home. Eventually, Arnaldo ended up shipped out (indefinitely) to an institution — the same exact one where Neli is also still locked up.
What has happened to Neli Latson, Arnaldo Rios-Soto, and Charles Kinsey cannot be explained or understood without connecting the realities of racism and ableism as dependent on one another.
In the context of violence targeting disabled people of color by people and institutions other than the police, racism and ableism still result in sharply disparate treatment of survivors and perpetrators.
In early 2017, a brutal assault against a disabled person that had been livestreamed with mocking comments from the attackers made national news — because the attackers were young Black people and the victim was a white disabled person. The resulting public discourse was riddled with the most disgusting anti-Black racism targeted at the attackers — blaming Blackness for their violence rather than ableism — and calls for “justice” that seemed, chillingly, like calls for a twenty-first century lynch mob.
Yet at the same time, another brutal assault — including horrific rape — committed by a group of young white athletes against a Black disabled victim, not only received considerably less news attention, but resulted in no prison time at all for the perpetrators. (To be clear, I am a prison abolitionist, and I do not believe that imprisonment is the same thing as justice; however, in a society where imprisonment is considered a socially sanctioned measure of contempt and condemnation for undesirable acts, sentences reflect social attitudes about the level of culpability of perpetrators.)
The first case will undoubtedly result in severe sanctions against the perpetrators, because Black people are always disproportionately sentenced to lengthier prison terms for any criminal offenses relative to white people convicted of the same offenses — and especially for violent offenses where the victim is white. The second case has already resulted in almost no sanctions at all against the white perpetrators who destroyed a Black person’s life. And worse, neither of the survivors are likely to have access to support and care resources that understand ableism or racism.
Taylor Kelleher (@taylor_kelleher): Lydia-in what ways do you think the otherness you experienced from the LGBTQ/ Church communities influenced your idea of disability?
Lydia X. Z. Brown (@autistichoya): Disablement results in marginality. What I mean is that I have always been disabled, and even when other people did not use that word to describe me, the signs of my otherness were always apparent. I’ve already lived a lifetime where I’ve been constantly perceived as weird, abnormal, unstable, deviant, and even threatening and freakish. No one had to say that I was disabled to recognize that my existence was disruptive to social expectations for what a “normal” person should be like.
In the church where I grew up, I felt constantly alienated from other people, even though the church was also integral to my community and personal development. The most alienation I felt came from the youth in the church — where I couldn’t figure out how to talk to other people in a way that wouldn’t result in responses that made me feel like I was being humored or tolerated or treated basically as a tag-along who they had to be nice to. Later, as I also began to develop left-leaning political opinions and my own thoughts on faith and the nature of God and the Christian life, I felt further alienated in the overall very conservative church.
On several occasions, older church members who had always been very important guiding forces in my life made openly disparaging comments about anyone who held left-leaning political opinions — that it was okay to hate us, that we weren’t right with God, and so on. Another time, my personal mission statement at the time — “I am a fugitive seeking truth in the lies” (memorialized in my high school email signature with additional elaboration) — led to an extremely condescending email from one of the pastors (and copying my parents, in a concerned tone), scolding me for questioning my pastors and parents as though that was an automatically horrible sin.
Questioning and critical thinking are core to my thought processes as an autistic person. My mind is constantly humming, brimming with thoughts and concepts and questions that cannot be captured in languages, stretching in a million different directions with sub-thoughts and sub-thoughts to the sub-thoughts, and wanting to dig constantly deeper and wider even in the things that feel bedrock certain to me. It always struck me as immensely wrong to stifle any person’s curiosity or concerns — such paternalistic control and authoritarianism seemed manifestly contrary to the idea of God as a wonderful mystery to be sought after and striven for.
My entry into LGBTQ spaces followed, roughly, on the heels of my departure from institutionalized Christianity. My realization of my own queerness was tough, uncomfortable, and scary — and riddled with constant doubt. Could I really be queer? I wondered whether I was just trying to claim something that could never actually belong to me. I wondered whether it was possible to be “really” queer if I had already dated (and deeply cared for, and loved) two cisgender, heterosexual men. Before I was eighteen, it never even occurred to me that it was possible for me to be something other than cisgender and straight. I operated under the unspoken assumption that of course that was who and what I was.
As I began to accept myself for the any gender-loving, asexual, genderqueer person I am, I settled into an uneasy relationship with queerness and transness as identities and communities. One issue has been the privileging of specific presentations of queerness and transness — often rooted not only in ableism and racism, but also in misogyny, by making masculinized appearance visibly queer and supposedly neutral while maintaining strict gendered interpretations of feminized appearance. Other issues have to deal with the constant disavowal of intersected and marginal marginalized identities within LGBTQ spaces — their centering of white, wealthy or resourced, educated, cisgender, abled, conventionally attractive, sexually normative people, at the direct expense of the rest of us.
In the church, being myself led to being treated like a freak (even if no one ever used that word), and being told to be a better Christian, I had to conform and assimilate to standards that were always going to be impossible to meet. In LGBTQ spaces, being myself led to feeling like a freak (even among those who proudly wave the freak flags), and getting the message that to be really queer, I had to conform and assimilate to standards that ironically reinforce the exact same things queer and trans communities supposedly resist. I guess you could say that those experiences shape my understanding of my disabled self by weaving patterns of exclusion, isolation, and rejection of non-normative and disruptive existence.
Dominick Evans (@dominickevans): Would love @autistichoya talk more about how bioethics intersects with race, gender id, sexual orientation, and disability together
Lydia X. Z. Brown (@autistichoya): The histories of disabled people, people of color, trans people, and queer people — and especially those of us who live at the intersections — are histories of bioethics gone wrong. Dehumanization, eugenics, objectification. I think of bioethics, and I think of textbooks and professors that think nothing of questioning whether it is better to be disabled or dead — whether disabled people can feel pain — whether Black or Latinx people have innate cognitive deficiencies compared to white people — whether trans people actually suffer from psychiatric complexes — whether mentally disabled or mad people are able to make decisions or not — whether paternalism can be justified for normal people (while of course it is accepted as a baseline that paternalism is morally required for people with mental disabilities, children, and elders) — and on and on and on.
The history of bioethics is the history of Anarcha, Lucy, and Betsey, all enslaved Black women subjected to horrific medical experimentation without anesthesia (on the assumption they did not feel pain) in the name of “science,” and whose torture is the foundation for the modern field of gynecology. The history of bioethics is the history of the working-class Black men whose syphilis went deliberately untreated to “see what would happen.” Of the developmentally disabled children in Fernald deliberately fed irradiated cereal to “see what would happen.” Of the creation of behavioral modification science by subjecting effeminate boys to humiliating and degrading punishment, and autistic children to painful electric shock, leading to today’s “most evidence-based treatment for autism.” Of the untold numbers of enslaved disabled Black Africans stolen from their homelands and labeled “refused” only to be sold to medical research laboratories. Of deliberately infecting psych disabled people locked in an institution with hepatitis. Of the over 70,000 people, largely disabled Black, Latinx, and Indigenous, forcibly sterilized following our Supreme Court’s decision upholding a disabled woman’s sterilization as in the public interest. Of the Nazi scientists, using American scientists leading work in eugenics to determine who to systematically murder in the Holocaust — targeting Jewish people alongside queer people, disabled people, Roma and Polish people, and others, and justifying all of it in the name of science and promoting the supreme (abled) white race.
The history of bioethics is white supremacy, setter-colonialism, empire, and ableism. It’s the current realities of substandard “care” for anyone living at the intersections — overall, doctors today still believe Black people feel less pain than white people; that disabled people are incapable of being consulted in their own treatment; that trans people’s genders should not be respected or affirmed. Medical students learn in environments steeped in racism and ableism. Earlier today, I spoke to a medical student who has done extensive research and failed to identify a single physician or medical student who is openly autistic, and almost none who are openly disabled in any way. I recently read a story of a Black physician attempting to provide emergency care to an airplane passenger in medical crisis, while the flight attendants persistently dismissed her and even berated her, because they couldn’t conceive of a Black woman doctor. And of the many trans, queer, disabled, fat, and people of color I’ve spoken to, I’ve witnessed innumerable stories of horrific treatment by doctors — sometimes even leaving people for dead or refusing to provide treatment. East Asian women assumed incapable of experiencing depression; trans people locked in psychiatric institutions for being trans; fat and disabled people being denied life-saving care; etc.
Mim Tea (@MimTea): @autistichoya, Do you see yourself as “disabled”? How is “disability” defined and defensible?
Lydia X. Z. Brown (@autistichoya): I do identify as disabled. I understand disability less as a static concept or a clean, clear binary (of disabled versus abled), and instead as disabledment. Disablement is both a process and the product of that same process. Disablement is the process by which embodied realities (biological or neurological) interact in complex and fluid ways with socio-cultural values about what kinds of bodyminds are valuable, worthy, and desirable — in other words, which bodyminds are considered functional, healthy, fit, or “normal.” Disablement means that people whose bodyminds don’t fit that imagined normal become disabled. In that way, disabled is a socio-political positioning similar to queer. For this reason, I don’t think of “disabled” as a negative or shameful thing (something many people will say to me when they question why or whether I should call myself disabled) — ableist society ascribes negative value and shame to disability; neither are inherent to either the word or to the experience.
Irene Melamed (@IreneNoraM): It is often necessary, as a disabled person, to deliberately make one’s disability visible and salient to others (for the sake of advocacy, or the sake of getting needed accommodation)—sometimes to the point of incapacity. How do you navigate this tension? [question paraphrased for clarity]
Lydia X. Z. Brown (@autistichoya): Absolutely, ableist dismissal of struggle often means that disabled people have to perform being disabled in a hyper-ableist way before it is recognized, but this is also unpredictable and complicated for any person. Some disabled people cannot ever hide their disability; others are more apparently disabled in some contexts but not others; still others are obviously “different” but not necessarily recognized as disabled even if that is the reason for their “difference.” I think this is an individual judgment call that people have to make for themselves based on context and situation, and that disabled movements should not create moralizing judgmental standards that interfere with individual disabled people doing what they decide they need to do to meet their own basic needs or to signify their membership in community.
Beverly Maurice, Bev4Bioethics (@BeverlyMaurice): Despite great strides made in communicating to those outside the disabled community how to speak respectfully and sensitively about those with disabilities (e.g., refer to “Beverly in the wheelchair” rather than “Beverly the wheelchair lady), from her perspective it can sometimes seem like the “preferred” language “dismisses” the disability. What recommendations do you have for using language in a way that is both respectful of personhood but non-dismissive of difference? [question paraphrased for clarity]
Lydia X. Z. Brown (@autistichoya): I and many in the autistic activist community prefer what is called identity-first language (i.e. disabled person, autistic person) as opposed to the widely touted person-first language (i.e. person with a disability, person with autism). For us, that language recognizes the importance of disability to our identities and experience, and that being disabled does not somehow detract from having personhood.
My usual and general advice to outsiders is that it’s okay to use both identity-first and person-first language — and that of course, specific communities have different preferences (while the autistic community overwhelmingly prefers identity-first, for example, the intellectual disabilities self-advocacy community overwhelmingly prefers person-first), which if known, should always be respected, just like any individual person’s preference. My issue is more with euphemistic terms (like the vomit-inducing “diffability” or “handicapable,” or variations on “differently abled” or “special”), and contortions of person-first language that seem desperate to create as much linguistic distance from disability as possible out of ableist shame/repulsion/fear — “person who happens to have been touched by the experience of living with being affected by the diagnosis of having a disorder on the spectrum labeled as autism.”
For me, “disabled” is just fine — it’s part of my (disabled) humanity.
Note: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of the Kennedy Institute of Ethics or Georgetown University.