Preliminary Thoughts on Race, Disability, and Health

Despite increasingly widespread attention to disability rights, disability outcomes in the United States remain shockingly divided by race. Few people realize that having a disability today is literally deadlier for Americans who are not white.

The numbers are haunting. While life expectancy for white Americans with Down syndrome is 60 years, African Americans live only half as long. Indeed, Blacks with Down syndrome are significantly more likely to die before their first birthday and face higher mortality rates until age 20. Since race has no biological impact on Down syndrome, social causes are the only possible explanation.

Down syndrome is not an anomaly. Looking at Spina Bifida, 96% of white babies survive their first year, but the number drops to 88% for Blacks and 93% for Hispanics. Autism, ADHD, speech and language disorders, and mental illness show similar racial disparities in diagnosis, care, and outcomes. Yet this receives scant attention by the media, researchers, and policy makers. Why?

Consider, too, the links between disability, race, and risk of violence. While it is known that people with disabilities are more likely to be victims of violence, how does this break down by race? What about violence committed by law enforcement? Time and again, we have seen highly publicized cases of police violence against people of color with additional conditions. Eric Garner’s asthma, Freddie Gray’s lead poisoning, Sandra Bland’s alleged depression, Matthew Ajibade’s bipolar disorder, and more. The list is growing, but the discussion about race and disability has barely begun.

As an anthropologist with expertise on disability in the U.S., I have encountered these disparities firsthand in my qualitative research and also in my ongoing review of the literature. Despite the successes of disability rights, millions of Americans with disabilities are cut off because of the color of their skin. People are hurting. People are dying. And, for the most part, this story remains untold.

[This piece is taken from a magazine pitch I recently submitted. Any suggestions regarding where to publish this story would be greatly appreciated! Note that this is not an academic piece. I want to reach people and build awareness, so the last place I would want to publish this particular paper would be in a paywalled journal!]

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Disability: A Sister’s Ambivalence

I have a confession: there are many days when I wish I was anything but a disability researcher. I think wistfully to my high school aspirations of becoming a pediatrician or psychologist, or my college plans to go into journalism, and I wonder when I veered off course. I ask myself constantly how and why I got to where I am. Recently, it’s become a daily ritual.

Disability is hard for me. My sister has disabilities – and not the recognized, easy to explain kind, if such a thing even exists. She has multiple sensory impairments, distinctive facial features, long limbs, and a strangely slow gait for no apparent reason; she is taller and stronger than I am. Katie knows some signs – fewer than 100, I’d say – and she lost what hearing she was born with during elementary school. She cannot communicate verbally except through a series of indecipherable grunts, cries, or yells. My young son has begun imitating her as a joke on occasion, and I find myself clueless as to how to respond.

Our childhood was messy, as is the case for families with an undiagnosed son or daughter. We never knew anything, certainly not a diagnosis. How did the seemingly mismatched collection of impairments and conditions – cleft lip, heart murmur, and hearing and visual impairments, among others – fit together? Why did she never learn to talk? What caused the ear infections that resulted in total hearing loss? What could we do with intense self-abuse once it began? Why was our school district refusing to help us? So many questions, hopes, anxieties, fears, and – as a sibling – the requirement that I shift as seamlessly as possible between my home disability world and the outside realm.

I lost interest in medicine, teaching, and psychology as a teenager because no one could help my sister. I never even considered speech therapy for that same reason. As I saw it at the time, the only thing this endless parade of specialists had ever done was get my hopes up and then disappear. I always wanted to help families of people with disabilities, yet I had been so fully and deeply disappointed by them in my own life that I flinched at the thought. I never considered that perhaps I could bring something new, help people in new ways within a more traditional role. I simply could not bear the thought of letting down other children and families the way that, for my family, was central to our ongoing emotional upheaval and Katie’s ultimate deterioration. None of those people were able to really reach my sister, yet all of them talked a good game while also getting paid. And there was no recourse, no accountability. Just wasted time and fruitless ventures, one after another. That is what I saw.

It’s perhaps no surprise, then, that my relationship with disability is marked by ambivalence. Indeed, the topic itself is far too intimate and fraught for me. I want to champion disability rights, to raise awareness about the experiences of individuals and their families, and yet, as a sibling, I know I could do better. As a parent, I am terrified – terrified, truly – by the thought of my child having a disability. I watch my child like a hawk, overanalyzing every idiosyncrasy as a sign of something more. I am ashamed to admit this. It goes against everything I want to say that I believe about equality and acceptance, about actively incorporating new types of diversity into the fold of contemporary humanity. About carving a better world. And yet, it sends me into a panic. Disability is both my life’s work, if I can make such a bold claim, and my Achilles heel. It fuels my creativity and animates my politics, yet I also live in fear – too much, too illogical – from what I witnessed in my own home growing up.

The scholar in me can say with confidence that my sister was the product of an era that no longer exists. Disability rights were fairly new. CHARGE syndrome, which we now know Katie has, had only just been identified and she would not be diagnosed for years. My family was told not to teach her sign language for far too many years – an egregious legacy of the oralism movement that had a tragic impact on my sister. We were in ongoing litigation with our school district and state, both of which I grew to hate (a word I do not throw around, as I learned what it really meant quite early). The powers-that-be were despicable, yet it wasn’t entirely their fault. There was no one else we knew of like Katie in the area. Special ed meant Down syndrome, it meant the children then lumped under the R-word. It was a blurry umbrella that completely obscured anything extraneous, a bureaucratic designation above all else.

In turn, my ambivalence is not directed at my sister or others with her (or, really, any particular) diagnosis, but at the world in which these labels unfold. Katie’s world failed her. It did so by way of a dull, persistent combination of stigma, ignorance, ableism, protocol, and laziness. It failed her in its refusal to acknowledge the social and cultural underpinnings of disability experience, which is a fancy way of saying that context is critical in shaping what disability means, does, and how it looks. This is all the more poignant from where I write today, in Texas, a state widely regarded as failing its citizens with disabilities. For disability – and for families – place and time can be paramount

Disability structured the rhythms of my childhood and, today, my memories. We took our final family summer vacation the summer after I finished seventh grade. After that, Katie’s physical outbursts became to serious. The litigation with the school and state became too onerous. Money was drying up, my sister was falling apart, and I was conveniently able to slide out of the full-time family scene through things like summer camps and, later, part-time jobs. Katie’s self-abuse grew extreme. Banging her head on walls or the floor, throwing her body around while in a chair. Such a violence of the self. I stopped having friends over. I was not going to let them see my sister fall apart – into herself, away from any trace of hope – before us, because there’s no other way to explain what was happening. And, as much as I would love to coat this tale in more positive language, there is absolutely no question of what happened. My sister began life with capabilities that were stamped out over the years. She lost herself, was lost inside of herself in a world that cast her aside completely. She spent her childhood in solitary confinement. And she never got out.

This is the disability world that lives in the back of my mind. This is why I panic at the thought of my child being shy or crying at the sound of a paper towel dispenser – the innocuous quirks of growing that shouldn’t merit a second thought. This is why I find myself wondering all of a sudden if I have the emotional power to even consider a second child. Because I have been consumed by a fear, by an all-encompassing panic that sends me into a tailspin of memories and also anxieties about what lies ahead for Katie. Because I see her retreating again, pulling back into self-abuse that is interrupted only by hours staring mindlessly, stuck in a house with no community involvement, no friends, no connections – none of the things that keep me even slightly balanced. And, if I’m being honest, it terrifies me.

But the fact remains that, at some point, I decided to make meaning out of my experience through talking to other families, writing their stories, and sharing what I know. Perhaps it is the only way I can make sense of why things did not turn out differently for my sister, for us. “My work is about making sense of people who fall out of diagnostic common-sense,” I used to say. But that’s too overblown. I just want to help interpret how families like mine diverge from collective notions of the good life at the level of the body. Because, ever since Katie was born, I grappled with fundamental questions of how we value bodies, perception, function, and the senses. I remember trying to quantify sensory meaning – what would you give up if you had to? I dreamed that Katie would simply begin speaking one day. I made her play “speech therapy” with me, forcing her to sit at my child’s table in the kitchen, so sure I would be the one to finally prod some words out of her. I recall vividly trying to imagine what was going through Katie’s mind as she pounded her head against the dining room wall. Or afterward. Was it rage? Frustration? I now explain it to my young son: “Aunt Katie cannot talk, she can only talk to us through her body. And this is how she shows us she is upset.” Is that right? Is my explanation some sort of ableist violation in and of itself, or should I perhaps look more closely at how I attempt to explain my sister in the simplest terms?

And my son loves his Aunt Katie. He talks about her regularly, even though we live two states away, but he also jokes innocently – yet almost automatically – about her sounds and facial expressions, the way she narrows her eyes and flattens her mouth into a crooked not-quite-scowl. And I let him, reminding him only that Katie is different and different is okay. I have to stop myself from forbidding such jokes, since I know he is only trying to make sense of his only aunt and children learn through mimicking, through imitation. The last thing I want is to teach him not to speak of difference and diversity, whether disability or otherwise. One lesson we should all know by now is that codes of silence simply do not work. They destroy any possibilities for integration and understanding. And so I keep the dialog open.

I have been unable to write recently, I think because I have had so much trouble being honest with myself about disability in my life. It is too intimate, too close, and I struggle to break out of the scripts I’ve been working on for three decades now. Friends nod when I mention writers block, saying this is simply what happens with academics – the projects drag, they mess with our perspectives of the world – but for me it is much more than that. My research grows forth from my core, from the most hidden and intimate spaces of my being. It is not a fetishized interest or curiosity, but is arguably the most defining aspect of who I am. So, yes, there are days when I ruefully tell myself I should’ve just gone into marketing like everyone else. But that just isn’t me. It’s not my story. And it never was.

Disability Fieldnotes Week in Review: June 26-July 2

Here is a curated collection of last week’s disability news. Enjoy!

History:

“Laura’s World” (Louis Menand)
New Yorker feature story on Laura Bridgman, the first deafblind child to receive a proper education in the U.S. Bridgman’s deafblindness was the result of scarlet fever as a young child, and she went on to study at Perkins School for the Blind, where my younger sister went to school as a teenager. For a fictionalized account of Bridgman’s life, read Kimberly Elkins’ What Is Visible

Disability, Law, and Society:

“Why French Kids Don’t Have ADHD” (Marilyn Wedge)
Interesting piece on the the cultural facets of this common diagnosis. While I cannot comment on the science behind it, I do believe it’s important to question contemporary understandings of “disorder” and even “diagnosis.” I’m curious to read more from this author. Continue reading

Undiagnosed Disabilities: Some Preliminary Thoughts

What does it mean to be undiagnosed?  I ask this both in regard to the impact of diagnostic ambiguity and also the broader social and biomedical significance of a diagnostic void.  More specifically, I’m interested in what it means to give meaning to the lack of a diagnosis.  To not having a name, not having an access card to services or therapies, to the affective and logistical resources that ground people with disabilities and their families in broader worlds, worlds that reach beyond the parameters of their autobiographies, stretching outside the walls of their homes and the borders of memories.

My sister, Katie, was born in 1984.  She was slightly premature – but not alarmingly so – and had a seemingly mismatched collection of impairments and health conditions.  After her birth, doctors told my parents that she would not survive.  I vividly recall going to preschool as all of this unfolded and being congratulated for being a big sister.  “What’s your baby sister’s name?” asked my teachers and my classmates’ parents.  “She doesn’t have one yet,” I replied.  “The doctors aren’t sure if she will live, so my parents haven’t named her yet.”  I was four years old and did not realize the singular strangeness of this statement. Continue reading

Diagnosis On My Mind

As a disability sibling and scholar, my professional and personal lives blur.  They unfold within a tension and, when I’m in the thick of interviews with family members or am sifting through my existing data, I necessarily engage with the words and experiences more fully – or simply differently – than if I had the luxury of empathetic detachment.  The stories cut just too close to the quick.  The modern term of art would be trigger warning: my data, my project, is one continuous trigger warning.  But that’s so dramatic.  Lives happen, experiences unfold, and we deal with the affective and practical worlds in which we land.  So I sweat out the memories in my long runs or watching an episode of “Parks and Recreation” on Netflix at the end of a day of recording and coding data.  I knead the old negativity away as I prepare pizza dough from scratch, marveling as it doubles in size, or baking chocolate chip cookies.  I do what I can to detoxify the old stresses, doubts, and what-if’s of my own family’s story as I listen to others share theirs.  It’s a balancing act, but it’s the one I chose.

My research examines family experiences with rare and undiagnosed disabilities.  This is an incredibly important and largely unrecognized population numbering well into the millions, and my work is part of a slowly stirring effort to raise awareness about this world.  On both a personal and intellectual level, I am fascinated by the possibilities for diagnostic identity – for reframing a lack of diagnosis not as an individual anomaly (often with heavy moral undertones), but rather as an expansive reality that is neither a negation of modern biomedicine’s promises nor an inherently isolating and ambiguous embodied reality.   Continue reading

Diagnostic Snapshot: Autism Prevalence and Disparities

I am currently working on a longer piece for Autism Awareness Month.  Diagnostic meaning, environment, conspiracy theories, what Ian Hacking would call “making up people” – all of this plays into my interest of how we, as a society, make sense of difference.  What do the stories we tell ourselves about physical, intellectual, and/or physiological difference reveal about collective anxieties, fears, and aspirations?  What might they tell us about shifting notions of the good life?  How do these forces intersect with bodies, medical knowledge, and beliefs in daily life?  And what, really, can we do with such knowledge? These are heady, but important, questions and they highlight the potential contributions for anthropology to inform understandings of difference, disability, and health.  

For now, take a look at three sets of data.  The first chart (found here) is a striking snapshot of increasing rates of autism diagnoses in the last decade.  The second one (located here) breaks down the racial makeup of U.S. children with autism.  The third chart, courtesy of the NIMH, looks at autism diagnoses in terms of both race and gender.  Do keep in mind that these data are superficial, in that they say nothing about the functioning level of the individuals in question (e.g., if they are considered to have intellectual disabilities), which is a critical component of the racial and also gender disparities with Autism Spectrum Disorders.

Autism Data 2000-2010 (CDC)

Autism and RaceAutism Prevalence by Race and Gender

10 Things You Should Know About Disability, Race, and Health

  1. Disparities in health and life expectancy for minority people with with disabilities reflect broader trends of inequality in the U.S.
  2. People with disabilities confront complex and overlapping stereotypes, assumptions, and false beliefs regarding both disability and race, including when obtaining medical care.
  3. Blacks and Hispanics with disabilities self-report lower health outcomes than do their white peers.
  4. Race can literally determine survival.  In one study, the three factors most closely associated with increased mortality of children with Down syndrome were: a) low birth rate; b) presence of congenital heart defects; and c) race/ethnicity.
  5. Race can play a significant role in the diagnosis and subsequent treatment of a condition, such as in the case of mental illness.  Even when displaying the same symptoms, a Black patient is more likely to be diagnosed with schizophrenia while a White patient would be labeled with an affective disorder. (See here.)
  6. 48% of Black children with Autism Spectrum Disorders are also diagnosed with intellectual disabilities.  The number falls to 38% for Hispanic children and 25% for Whites. (For more, read this new report.)
  7. Race has no impact whatsoever on the severity of Down syndrome, nor does it determine an individual’s future functioning level.
  8. Among children with Down syndrome, racial disparities in survival emerge after the first year and continue to grow throughout childhood and adolescence.
  9. Lack of medical provider training is “pervasive.”  Research demonstrates the persistence of erroneous beliefs, such as the notion that people with disabilities do not feel pain in typical ways and thus do not need anesthesia.  (See this fantastic report for further information.)
  10. Remember: race is a social construct, not a biological or genetic category.  Race reflects history, power, and social organization, rather than any innate biological difference, role, or predestination.  In turn, racial health disparities for people with and without disabilities are social in nature and can be fixed.

Disability and Health Disparities: Some Quick Facts

The CDC defines health disparities as:

A type of difference in health that is closely linked with social or economic disadvantage. Health disparities negatively affect groups of people who have systematically experienced greater social or economic obstacles to health. These obstacles stem from characteristics historically linked to discrimination or exclusion such as race or ethnicity, religion, socioeconomic status, gender, mental health, sexual orientation, or geographic location. Other characteristics include cognitive, sensory, or physical disability.

For the last few months, I have gathered articles and data on the intersections of health outcomes, disability, and race.  What I have learned is sobering and raises questions not only about the social determinants of health and shortcomings of contemporary medical practice, but also the insidiously silent realities of modern-day racism, marginalization, and perhaps even eugenics.  I will write more about this in the coming weeks.  For now, a look at the numbers.

  • Black children with Down syndrome are twice as likely to die during childhood and adolescence as their White peers.  In 1960, an individual born with Down syndrome typically lived only a few years.  While there have been great gains in health outcomes for Americans with Down syndrome, the distribution of progress is far from equal.  As recently as the 1990s, the life expectancy for Black Americans with Down syndrome was approximately half of that of their White peers.(For more, refer to this CDC study and also here.)
  •  In one study of infants with Down syndrome in Texas, there were no significant differences in infant mortality within the first year of life.  The disparities emerge and grow continuously during childhood and adolescence, pointing clearly to social factors .
  • Americans with disabilities are four times as likely to report their overall health as fair to poor, in contrast to their non-disabled peers.
  • According to one study, adults ages 30+ with intellectual disabilities are five times as likely to have diabetes.  They also experience similar disparities regarding asthma, arthritis, cardiovascular disease, high cholesterol, hypertension, and stroke.
  • CDC data indicates that children with disabilities are 38% more likely than their non-disabled peers to be obese.  The number rises to 57% for adults.
  • In Texas, adults with disabilities are significantly more likely to have arthritis, asthma, cancer, stroke, kidney disease, diabetes, or COPD, as well as depression.  They are also more likely to have had a hysterectomy or to lose teeth due to decay or disease.  (See this page for more.)
  • 44% of Whites diagnosed with depression receive antidepressants.  The figure for Black Americans?  27%.  (See AAHD Fact Sheet for more.)
  • Of people diagnosed with serious mental illness, three in every five will die 25 years earlier than their peers due to preventable chronic diseases, such as asthma, cancer, diabetes, and heart disease (AAHD Fact Sheet).
  • Nearly 61% of Americans with disabilities are obese (CDC-NCBDD).

Diagnosis Day

My work focuses in part of shifting understandings of and experiences with disability diagnoses, so I was very excited to learn of this video, “The Extreme Parenting Project,” by Elizabeth Aquino.  ECheck it out:

I have been reading, writing, and thinking about diagnoses recently – perhaps even more than usual.  What a diagnosis means within a particular community (defined in various ways), what it does, how diagnoses shift, how they travel and translate.  It always brings me back to a scene from my preliminary research.  I was at a shelter for people with disabilities – a “good” and seemingly safe space, for the most part – and was having a wonderful conversation with the nun in charge.  She mentioned rising autism rates in Guatemala, which piqued my interest.  “Yes,” she told me, “we just had a specialist visit from your country and she said that 1 in 100 children have autism.  We just don’t know who they are yet.”  I paused.  I still pause when I recall this, wondering what it does when well-meaning professionals push children into the category of the day.  It is a classic anthropological moment in that, for me, the unfamiliar context served to cast a commonplace practice into high relief.

Diagnosis, response, “treatment,” experience, moment.  These are ripe areas for medical anthropologists and STS folks, among others.  Chloe Silverman has done some fantastic work on the modern history of autism, particularly knowledge claims surrounding the diagnosis.  For more, definitely check out her book Understanding Autism: Parents, Doctors, and the History of a Disorder.