The New York Times just released its picks for the 10 best books of the year, and it’s hard to miss a few surprising themes. Disability, risk, health, and even anthropology stand out in at least four of the 10 selections.
I was thrilled to see Akhil Sharma’s Family Life on the list, a beautifully concise rendering of the protagonist’s experiences with a brother who sustained life-altering disabilities following an early-adolescence accident in a swimming pool. The story is eerily similar to Sharma’s own, and he has said elsewhere that it is approximately 70% true. How stunning to have another sibling recognized for sharing his story, even if it is one I found difficult to read at times. Sharma captured a sibling experience that resonated with my own in his refusal to turn saccharin. I sensed an emotional boundary in his writing that indicated not a lack of connection with his words, but rather an intense understanding of the emotional boundaries he set for himself long ago, of the desire not to make things worse and to decipher a situation – looking back, years later – for which he had not other models. This is an incredibly important intervention in that it breaks from the inspirational and affectively charged narratives that mark so many family disability stories, whether fictional or otherwise. This book is the opposite of anything on the Huffington Post. It is raw, yet restrained; the emotions are controlled and deliberate, but their depth renders them dangerous. You can find Louise Kinross’ beautiful interview with Sharma for BLOOM here. I also suggest reading this fascinating piece in which Sharma describes how he wrote Family Life.
Another striking selection was Eula Biss’ On Immunity: An Inocculation. Written from her perspective as a mother – and one of the peculiarly citified, educated, Whole Foods-shopping, chemical-fearing modern ilk that I know so well – Biss probes the logics and anxieties of vaccinations in the contemporary U.S. I absolutely recommend reading this in tandem with Seth Mnookin’s The Panic Virus. While I’ll admit I found Biss’ voice grating at times (if only because it captured all too well my own nagging fears as a mother within the same urban tribe), her treatment of the moral imperative of herd immunity is important in its nuanced, yet unwavering, commitment to acting for the greater community good.
The two additional picks that caught my eye were Anthony Doerr’s All the Light We Cannot See, which features a prominent character who is blind, and Lily King’s Euphoria, which is a fictionalized account of Margaret Mead’s romantic drama between her second and third husbands. I haven’t read either of these yet, but I have both on hold at my library and will let you know what I think.
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
As the Ebola outbreak in West Africa continues to grow, global fears are rising above the level of murmur. Will the disease morph and become airborne? Why do some local communities, who have literally never encountered this illness in the past, continue to deny its existence? What can world powers throw at the problem to fix it – money, research, experimental drugs, or even military assistance?
These are all questions about containment, and much of the media coverage feeds on and foments public fear. At its core, we should be asking one key question of both moral and practical importance: how can the international community work with local institutions to halt the spread of Ebola? Within this question, there is a critical space for anthropologists and related specialists to illuminate the social and cultural facets of transmission. Such knowledge can have critical and, indeed, lifesaving power to transform the current reality of containment efforts. Rather than living up to its popular image as a purely academic pursuit – albeit an adventurous one – with little real-world value, the Ebola outbreak throws into high relief the continued need for anthropological insights on a global scale. Continue reading
Guinea, Sierra Leone, Liberia, Nigeria, and now Senegal. The outbreak of Ebola in West Africa continues to spread. Marked by high mortality rates and images of gruesome death by hemorrhage, Ebola is perhaps the quintessential modern plague. The current epidemic has been a fixture of the international news for months now, particularly in regard to public health efforts and the significant risks to medical staff (including two Americans) working with inadequate resources to help afflicted communities.
But why are we so transfixed, particularly since the numbers pale in comparison to global rates for far less “exotic” illnesses? And how do international understandings and fears surrounding Ebola connect with underlying (mis)conceptions regarding Africa? Consider, for instance, that up to an estimated half-million people die each year from influenza around the world. Why does that simple fact lack the visceral panic associated with discussions of Ebola? Ebola is terrifying, to be sure, but it also raises important questions about understandings of risk, contagion, regionalism, and the values attached to some lives, to some forms of death.
I will begin this with a disclaimer: my research does not focus on sex. It’s simply not my area and, for whatever reason, the subject hasn’t pulled me in as a scholar. That said, sex and sexuality have been recurring themes in my dissertation fieldwork. People want to discuss them. Parents, families, educators, psychologists, physicians, policy folks. As with any population, sex talk in the context of disability brings up anxieties, curiosities, and questions; it sparks discussion of risk (real or imagined), agency (ditto), gender, health, and the unknown. While none of this is unique to a particular group, the lack of space for conversations surrounding sex and disability as a whole gives pause. Continue reading
Sports, National Heroes, and Recognition of Difference
Disability issues loomed large in the news this past week, thanks in part to the incredible performance and surge in popularity of USMNT goalie Tim Howard at the World Cup. I wrote about this in my recent post, Let’s Talk About Tim Howard, which includes a collection of links to recent media attention to this brilliant athlete who also happens to have Tourette’s syndrome.
The State of Special Education
DisabilityScoop published an important piece for anyone interested in the educational realities of children with disabilities, “Most States Deficient in Special Education.” The U.S. Department of Education has announced new measures for assessing special education performance at the state level. Based on data from the 2012-13 school year, a mere 15 states meet the current requirements. California, Delaware, Texas, and the District of Columbia received a “Needs Intervention” classification. These data were released in conjunction with Arne Duncan’s announcement of significant changes to come in the oversight of special education, which you can read about here and also in a more nuanced piece here. The Huffington Post also published a piece on topic here.
Does Disability Make Somebody Homicidal? Answer: No! Continue reading
I am excited to announce my recent piece for Somatosphere.net, “Addressing Racial/Ethnic Health Disparities: A Conference Report.”
The piece offers a close snapshot of an important conference held at the University of Texas in the fall, which brought together interdisciplinary experts from across North America to discuss future possibilities for social medicine. It was one of the most intellectually stimulating events I have attended, and it became an important jumping off point for new areas of my own research.
The list of speakers included Dorothy Roberts, Lance Gravlee, Jonathan Metzl, Helena Hansen, and many others. Several UT faculty with whom I work participated in the working groups on the second day of the event, which offered a collaborative space to brainstorm the role of transdisciplinary efforts in medical education and practice.
I would encourage anyone who is interested in issues of race and/or health to read this piece and learn more about the conference participants. Please keep any eye out for my companion piece on the need for research on the intersections of race, disability, and health, which is a markedly understudied area.
This is a follow-up to my previous post regarding the intersections of disability, race, and health outcomes in the U.S. It is a shameful truth that the health experiences of Americans with and without disabilities reflect the continued role of inequality, marginalization, and racism in our society today. Although racial categories exist within and reflect certain common sense understandings of identity, it is critical to note that these are not biological categories. Race unfolds differently in different spaces, eras, and cultures; it is social in nature, history, and power. The affects are exacerbated for people of color who also have disabilities, due to the intersectionality of race and disability. In order to understand the health challenges facing this often overlooked population, it is important to first contextualize the impact of race on Americans’ health. Unless otherwise noted, the statistics below are from the Office of Minority Health.
- The infant mortality rate for African American babies is double that for Whites.
- Over 80% of children born with HIV are minorities.
- The rate of HIV/AIDS infection for Black women is 20 times that for White women
- African American men are twice as likely to die from prostate cancer than their White peers.
- Black women are three-to-six times as likely to die resulting from pregnancy complications than their White peers. (See ACOG for more on women’s health.)
- Black women are diagnosed with breast cancer 10% less often than White women, yet are 40% more likely to die from it.
- Hispanic women are two times as likely as non-Hispanic White women to die from cervical cancer.
- Minorities comprise over half of organ donor waiting lists, yet account for only about one-third of organ transplants.
- Although only 6% of African Americans have heart disease, they are 30% more likely to die from heart disease than their White peers.
- White men live over four years longer than their Black peers, and Black women die approximately three years earlier than White women.
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.
Women with disabilities are significantly less likely than their non-disabled peers to receive routine women’s health screenings, such as pap smears or mammograms. For a look at individual state performance, check out the charts below. These figures are courtesy of the CDC and are just some of the incredibly useful information regarding disability, health, and disparities found here.