Here is the link to the paper I will present at the 2015 annual meeting of the American Anthropological Association.
Please do not use, cite, or copy without specific permission from me. Thank you!
Here is the link to the paper I will present at the 2015 annual meeting of the American Anthropological Association.
Please do not use, cite, or copy without specific permission from me. Thank you!
At some point this year, my dissertation shifted from a (largely unwritten) traditional ethnography to an intentional experiment on writing/thinking/doing disability as a scholar. This was a change borne out of necessity, namely an ongoing writers block stemming from my constant worry about the question of truth. Truthtelling, to be exact. How to form my data into a cohesive project that is 1) mildly elucidating; 2) useful for scholars, families, and professionals in the disability field; and 3) does both 1 and 2 while also doing no harm to my interviewees. This was the hard part.
As both a disability sibling and an anthropologist, I know firsthand that these stories can be dangerous. A family’s tales of stones left unturned, unexamined research studies, the bad luck of geography and time, neglecting to get a second opinion or perhaps listen to the first. Of affective, medical, and therapeutic worlds that have not caught up to the daily needs and lives of these children.
Context is huge, and hugely personal, when dealing with a child with undiagnosed disabilities. I recall a woman I wrote about in my Master’s thesis, whose son’s abilities were seriously compromised by a lack of services during early childhood. I wrote about her experience in my thesis – uneasily, knowing that perhaps I shouldn’t – telling myself that the story was meaningful. Others could learn from this illustration that disability is dynamic and social shaping could be paramount. Did the mother read it? I have no clue. But I mailed a copy to the disability organization where she worked at the time and I’ve thought about it for a decade. In my current work, this was not an experience I wanted to repeat.
I know, too, that in my own family’s disability history there are stories I simply will not tell. Things that have long gone unspoken, that not even my husband knows. Details and ruminations that would traumatize through seemingly sterile memories or the insertion of present knowledge onto past predicaments. And so I remain silent, focusing instead on the generative power of this personal knowledge. As a researcher, I feel obligated to approach the stories of others as I would my own. The question is how to reconcile this new ethics of disability anthropology with disciplinary expectations.
The notion of truth is, of course, fraught. This was captured in the movie classic Rashomon (which every anthropologist should watch), but also more recently in Sarah Treem’s outstanding Showtime series The Affair. I found myself sucked into The Affair’s treatment of truth, memory, and perspective. I became convinced it was directly relevant to my project. And only recently did this start to make sense. Matters of perspective, detail, and the everyday are more subjective than we care to admit, whether as anthropologists or otherwise. For storytellers of the scholarly variety, this raises significant challenges – all the more pressing in research like mine, in which these narratives are embodied physically, emotionally, and intellectually by the children of the parents I interviewed.
Recently, I wrote my first short story in years. It was more of an experiment than anything else, but the words flowed in a way they hadn’t in months. The protagonist was a teenage girl with an undiagnosed sibling, and the story was based loosely on narratives from multiple interviews I conducted for my dissertation, as well as on my memories of growing up with my sister. It’s fair to say it was strongly influenced by my own experiences, yet not at all a piece of nonfiction.
I wrote 20 pages in two days. Twenty decent pages – workable, usable. Twenty pages not of a particular truth, but of a story I felt needed to be told and read. I felt no need to pause to flip through fieldnotes – no need to verify a quote or double check the age of the speaker. I was free to invent the incidentals as I went along. No IRB looking over my shoulder, no anxiety about my research subjects challenging or being harmed by my words. As a scholar, this experiment with fiction was one of the most liberating and productive experiences I have had.
Fiction in anthropology is a taboo. Ditto for our feelings about journalism. Worries of blurring genre lines, about compromising the strength of a discipline that is increasingly challenge by the public as a fanciful holdover from past eras. Sure, we hang our hats on counting Zora Neale Hurston among our disciplinary forebears, but for the most part anthropology thrives on embracing subjectivity while asserting scholarly rigor. It is an argument I largely swallow, but that many in our peer-reviewed society do not. And I cannot help but ask, why bother? If my aim as a scholar and activist is to reach people with my data – which consists, let’s face it, of collections of stories – what is the best medium? Voice? Genre? I am increasingly unconvinced that the answer is a traditional ethnography, particularly if it is published by an academic press and thus largely inaccessible to the public. What’s more, I’m increasingly convinced that the really real that ethnography seeks to capture exists in the composite. I am currently exploring this through my writing, which has become an exercise in distillation and compilation, rather than a comparative analysis of individual cases.
Along these lines, I recently attended a fantastic talk by Viet Thanh Nguyen and Jim Shepard at the Texas Book Festival, which touched on virtually everything I’ve been thinking about regarding fiction versus scholarship. These authors made me think not only of the emancipatory possibilities of fiction version ethnography, but also of its activist potential to fill in critical gaps in our own cultural narratives. How can we use fiction to create new archetypes? For my work, what about the potential to use fiction to carve out a space for undiagnosis as a state and not a stage? For the ambivalent sibling who is neither a martyr nor a failure? To eschew happy endings in favor of something more real. More really real, in fact. I think, too, of Rachel Simon, one of the most well-known disability writers of our time, who has tackled disability themes through both memoir and the novel. And, of course, I think of Rashomon and The Affair, and their reminders to remain wary of truth claims and steadfast narratives, whether from academics or others.
The takeaway? I can say definitively is that I am both intellectually and ethically uneasy about writing a typical ethnography. Rather than be stymied by tedious debates about replicability of findings or the risks of reflexivity, I would prefer to make things up as I go along. I mean this literally, using fiction, reflexive blog posts, jottings, and other experimental or informal writings as an accommodation to help move through the ambiguities and danger zones in my work. Stay tuned.
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!]
I recently gave a talk on race, disability, and health disparities at the CEDD 2015 Cross-Systems Summit in Austin. In an effort to ensure that my work is accessible to multiple audiences, I am posting the PowerPoint here.
The presentation includes a detailed discussion of the social construction of disability and the current context of disability in the U.S., and offers a provocative review of recent research on disability, race, and health. I pay particular attention to health disparities for African Americans and Hispanics with Down syndrome, over an overview of racial disparities in diagnoses (including autism), and include a discussion of racial disparities in mental health care. I plan to expand on this presentation and welcome feedback.
Note that this presentation is not to be duplicated or distributed without my permission.
Refreshing my memory in preparation for Friday’s talk on race, disability, and health.
Originally posted on Disability Fieldnotes:
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.
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There were some interesting news pieces this week. I’m particularly on the lookout for stories on that topic, since I will be giving a talk on race, disability, and health next month. If you see anything, please send it my way. Also, for those of you in the northeast, don’t forget about the First Annual Disability Pride Parade in New York on Sunday!
Without further ado, here is my curated list of disability news highlights from the past week:
“A Kindergarten Form Asks: Vaginal Birth or C-Section. Why?” (Cara Paiuk): I absolutely loved this piece – a rant, in many ways – in which Paiuk recalls her dismay at a kindergarten registration form that asked whether her child was delivered vaginally or via c-section. This, to me, is the perfect convergence of pop disability diagnostics and mother-blaming: the absurd notion that school nurses or other officials might link a child’s deliver, five years earlier, to certain traits or tendencies in the first year of grade school. Unbelievable. And scary that no other parents at the school raised any questions about this false connection.
“California, Camelot and Vaccines” (Frank Bruni): Bruni shares a curious history of communications with Robert Kennedy Jr, environmentalist and dangerously powerful voice against vaccination. My favorite quote from the piece: “Although the Internet could be making all of us smarter, it makes many of us stupider, because it’s not just a magnet for the curious. It’s a sinkhole for the gullible.”
“The Challenge of Public Dissemination” (EJ Sobo). A medical anthropologist thinks through her recent experience of having her research on vaccination beliefs and practices picked up – and then misinterpreted – by the popular press. A great look at anthropology for multiple audiences and the shifting nature of dissemination in a digital age.
Race and Disability
“Without Addressing Disability We’ll Never Make Meaningful Progress in Ending Police Violence” (Milwaukee Community Journal). An important piece about disability and intersectionality, a topic I’m seeing more and more.
“The Racial Imbalances of Special Education” (Weston Phippen): Experts speak out against recent study arguing that Black and Latino students are not overrepresented in special ed, contrary to widespread belief. Curiously, the social and cultural dimensions of (over)diagnosis don’t make it into the piece until almost the end.
“NYPD Officers Accused of Beating Teen with Autism Assumed He Was ‘Up to No Good’: Lawyer” (Andres Jauregui). A Black teen with autism was allegedly beaten by police for no reason in front of his home last fall. New York’s finest are at it again.
“Of all U.S. Police Shootings, One-Quarter Reportedly Involve the Mentally Ill” (NPR). The headline says it all
“Disability, Anthropology, and a Sister’s Ambivalence” (Liz Lewis). My recent blog piece on my ambivalent relationship with disability, both as a concept and also a central aspect of my family’s autobiography. I hesitated to write this and to put it out there, but it has touched a nerve with many readers.
“Celebrating 25 Years of the ADA” (Alan E. Guttmacher). 25 years and going, but we still have much to do!
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.
Here is a curated collection of last week’s disability news. Enjoy!
“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
This is the second installment in a two-part series about siblings and disability. The first part can be found here.
What does Disability Mean for Typical Siblings?
First things first, I want to be very clear about one thing: existing research does not support the widespread assumption that having a brother or sister with disabilities leads to negative outcomes for the typical sibling or that it is an inherently negative experience. It simply does not support this claim. More to the point, the literature indicates that, as a group, siblings cannot be distinguished from their peers. (See this piece for more.) Moreover, one finds no causal link between disability and negative outcomes for siblings. This is critical.
Perhaps a more interesting question is this: why do some siblings have negative experiences a while others do not? What is the role of disability here? What might this teach us about facilitating positive sibling experiences with disability? How might this enrich understandings, both scholarly and applied, about families and disability?
Disability, Behaviors, and Sibling Experience
It is important to note that research indicates a possible link between negative sibling experiences and the presence of behavioral challenges in the brother or sister with disabilities. Sadly, based on my personal experience I can say – anecdotally – that this resonates. My sister’s disabilities became a much bigger challenge for me once she became self-abusive. It was difficult to take her to many public places, as she was prone to throwing herself onto the ground, banging her head, and getting into an emotional and bodily space that was difficult to break.
While I was never overly concerned by the responses of strangers, I simply did not feel comfortable showing letting most of my friends see this. It was too unsettling and, to be honest, violent. Did this place additional strains on me as a sibling, particularly as I moved through the social mazes of high school? Absolutely. By the end of high school, I essentially did not let anyone in the door if Katie was awake. This is tragic and should never have had to happen. Did it have a lasting impact on me? Nah. But if I could do it over again I would make sure that my childhood friends had maintained their relationships with my whole family as we got older. With supports, knowledge, and communication, I believe that our isolation could have been mitigated.
Moving Forward: Key Points Regarding Siblings and Disability
Ultimately, what do we know about the brothers and sisters of people with disabilities? Not enough. But there are some positive glimmers. In a nutshell, here’s what I would say:
First, disability must not be mistaken for the primary determinant of a sibling’s well-being. Families are complex, as are individuals of all ages. We have the right to this complexity in all of its messiness, quirks, strengths, weaknesses, successes, failures, difficult spells, mistakes, and chance. It is a fallacy to explain a particular trait or tendency in terms of having a sibling with disabilities. This has been used all too often as a scapegoat and, frankly, I’m tired of it.
Second, more studies need to focus on – or, at least, include – siblings. That’s it. We need to know more.
Third, research must account for the diversity of family types and individual experiences. We need to unpack big, scary categories like race, ethnicity, and class. These are all too often ignored or glossed over in disability research in general, which I see as a massive problem. Our work must reflect our world. As a researcher and a sister, I have to stress the diversity of both family setups and sibling relationships. These are not monolithic categories, which makes (or should make) it difficult to generalize. For instance, my experience was shaped significantly by the fact that my sister is my only sibling. Also, we were four years apart. Someone with a sibling 10 years younger would likely have a different dynamic.
Four, just like parents, siblings deserve access to a community of peers. We must not be isolated. Family disability organizations need to prioritize sibling programs – not just once a year at the retreat, but as a regular and ongoing feature.
Five, siblings need self-determinism and independence. We need to be able to speak for ourselves in the literature, rather than continue to be told how we should think/feel/act. We need to muddy the waters and break out of the biases that continue to skew assumptions of what it means to have a brother or sister with disabilities.
Here are some of the disability news features that I found most interesting from the past week. Please send other suggestions my way!
Disability and Race
“Claim: Minorities Underrepresented in Special Education” (Michelle Diamond)
“More Minority Students Should be in Special Ed, Study Says” (Joy Resmovits)
“Minorities are Disproportionately Underrepresented in Special Education: Longitudinal Evidence Across Five Disability Conditions” (Paul L. Morgan et. al)
This study, published in Educational Researcher and then featured on Disability Scoop, examines the common assumption that children of color are overrepresented in U.S. special education programs. Surprisingly, the authors found the contrary to be true. I would love to hear more on this topic, as there remains much work to be done on the intersections of disability and race.
“Sowing New Needs in the Garden of Disability Rights Activism” (Emily Ladau)
“No Link Between C-Sections and Autism, Study Says” (Catherine Pearson)
“California Law to Curtail Vaccine Exemptions Clears Hurdle” (Rebecca Plevin)
“California Lawmakers Vote to Remove Vaccine Exemptions for Schoolchildren” (Scott Neuman)
“California Passes Bill to Require Vaccines and Ban Religious Exemptions” (Anna Diamond)
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