New Piece: Review Essay

The wonderful team at Somatosphere just published my review essay on three recent – and quite important – books on disability themes. “When Risk, Doubt, and Difference Converge: A Review Essay”highlights some of the key themes and questions from Lennard Davis’ The End of NormalEula Biss’ On Immunity: An Inoculation, and Jordynn Jack’s Autism and Gender: From Refrigerator Mothers to Computer Geeks

You can read the full essay here.

Strategies to Support Your “Typical” Kids

I was thrilled to have a piece published by The Mighty last week. My aim was to reach as many parents as possible with a few key strategies for helping their typically developing children who have siblings with disabilities. You can find the piece here:

5 Waysto Support Your Kids, From a Special Needs Sibling

(Disclaimer: I cannot stand the phrase “typical.” Alternatives welcome.)

The Diner

“Aunt K. used to be happy when she was young. Now, she’s angry.”


Aunt K.’s doll avatar, as imagined by a three-year-old..

My head snaps to the side, surprised by my three-year-old son’s statement during his after-school snack. Had he gotten this from me? Undoubtedly. Aunt K., my younger sister and his only aunt, has Charge syndrome and is largely isolated from the world around her. She has no community activities, and interacts almost solely with my parents, the staff at her house, and her roommate. She and I connect less and less with each visit. The erosion of personhood is a curious thing to witness.

She used to be happy when she was young. Now, she’s angry. It’s an oversimplification that glosses over many years in the middle, but it’s not incorrect. I would not say she’s angry, though. I would say done. Now, she’s done.  Continue reading


I was thrilled to have the opportunity to contribute a piece to Somatosphere’s series, The Ethnographic Case, edited by Drs. Emily Yates-Doerr and Christine Labuski. I love that site, the series editors were amazing to work with, and this exercise gave me a chance to think and write through a particular encounter that has haunted me since my early fieldwork in Central America.

In my piece, I revisit my single visit to one of the most abject spaces I have ever seen: a large “shelter” for people with disabilities in an anonymous Latin American city. I saw a little boy in a cage. Children far too big crammed into metal cots and speedily fed formula in bottles. Adults in straightjackets. And, in the case described in my recent piece, I met Maria, a blind indigenous woman who was abandoned as a child and ended up at the shelter, where she had been forced to live in isolation in a shed for years.

The spaces and scenes stuck with me. They were shocking, to be sure, but in thinking through them in terms of later fieldwork in the U.S. and elsewhere I realized that they weren’t the outliers – the isolated cases – I had originally assumed. They could not be written off so quickly.

Please take a few moments to read my piece, “The Enclosed Space.”

Status Check

I’ve been quiet the last few months. Let me explain.

First, I’ve been writing/thinking/crafting my dissertation. It examines family experiences with undiagnosed children, particularly those with genetic syndromes. I’ve experimented with genre, shape, and voice – perhaps a bit too much – and opted to follow the suggestion of my advisor: approach it as a writing experiment on disability (anthropology). So that’s exactly what I’m doing.

Second, I started teaching. And I’m loving it. It’s a bitter pill, since the odds are stacked against finding a TT teaching gig once I graduate, yet I feel immensely inspired by my students and simply by being back in the classroom. I’m also starting to doubt my previous claims that teaching wasn’t the best way to change understandings of disability. These kids are open. (And I know they’re not kids.) They have an openness to difference that my peers and I never did, and that was only a half-generation ago. I’m hopeful.

Third, as I’ve said, disability is hard for me. The proper Disability Studies scholar wants to cheerlead my way through rights-based discussions and perhaps veer into Marxist territory (if it’s a Friday), but underneath it all disability is still too close. It rattles me. My experience as a sibling was perhaps extreme – my sister’s low-incidence impairments, undiagnosed syndrome, no family and virtually no peer support (on this theme, at least), litigation with schools, etc. Perhaps I shouldn’t let it color my opinion or, as one commenter implied after a talk on sibling experiences, maybe I shouldn’t be such a downer. (I mean, really?)

But it’s important for me to keep it real and that means that I can’t always do this work. I just can’t. And, as someone who grew up in this world, I acquired intimate knowledge of my limits. And I listen to them.

I have to say, though, I’m feeling pretty jazzed. Disability themes are all over the news again. Zika! The CDC telling women not to drink without birth control! New studies claiming autism connects to women’s pre-pregnancy health! You know I love the convergence of disability, folk etiologies, and mother-blaming. And let’s not forget the water crisis in Flint, the continued incidents of police violence against people with disabilities, Lego’s new wheelchair figure, and this fantastic piece in the New Yorker, which echoed so many of my own questions regarding medical versus popular diagnostics. I’m not only excited about the fact of disability-as-news, but also the nuance represented. These stories represent a long overdue coming together of disability, race, ethnicity, class, regionality, nationality, gender, sexuality. They speak to patterns of consumption and public awareness. They engage public health, expressive culture, literature, and the violence of the everyday. This, I would argue, is where we need to be going. Bodies, scenes, histories, things. Are these not all part of the puzzle?

I’ll be posting more. I also have some online publications coming out – at least two, perhaps a third if I can work up the courage to finish it. (And, yes, courage is the word.) And if I can really get myself together, maybe I’ll even get a proper article out.

Stay tuned.






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.

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!]

A Silent Crisis: Race, Disability, and Health Disparities in the U.S.

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.


Disability and Health Disparities: Some Quick Facts

Refreshing my memory in preparation for Friday’s talk on race, disability, and health.

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.

  • Black children with…

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