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!]

Week in Review: September 7-14

Vaccinations
PBS series Nova aired an excellent one-hour piece, “Vaccines – Calling the Shots,” which can be streamed online.  It offers a general look at the history of recent vaccine debates in the U.S., with a special eye toward the troublesome resurgence of preventable disease outbreaks.  You can read reviews of “Calling the Shots” here and here.  This 2009 Wired article and this interview with anthropologist Sharon Kaufman offer some additional background on contemporary conspiracy theories and folk beliefs regarding vaccines today.

Politics
Texas state senator and gubernatorial candidate Wendy Davis shares her own history with abortion in her new memoir, Forgetting to be Afraid.  While it seems absurd to discuss her termination of an ectopic pregnancy in terms of abortion, Davis also reveals that she aborted a pregnancy after multiple physicians agreed that the baby would be born with disabilities if it even survived the pregnancy.  There is a lot to unpack in this story, particular in terms of the mainstream media’s lack of interest in probing the tensions between disability rights and women’s reproductive rights.  You can read more here and here.

Public Health
The Ebola outbreak in West Africa continues to spread unabated amidst growing international concern.  The BBC has a useful collection of relevant news updates and the New York Times featured an op-ed on Sunday criticizing the international community for it’s “feeble” response to the epidemic.  Current tallies indicate around 4,200 total infections with a continued mortality rate of approximately 50 percent, although it is likely that the numbers are somewhat greater.  For an anthropological take on media coverage of this outbreak, please read my recent piece “From Ebola to Pertussis: A Look at Medical Conspiracy Theories.”

More News
South African sprinter and double amputee Oscar Pistorius was found guilty of culpable homicide for shooting and killing his girlfriend in 2013.  Despite the verdict, Pistorius will still be able to represent his country in international competitions.

Events
Readers might want to have the following upcoming conferences on their radars:

American University Centers of Disability – “The Power of Engagement,” 2014 Conference, Washington, DC, November 9-12

American Anthropological Association – “Producing Anthropology,” 2014 Annual Meeting, Washington, DC, December 3-7

Society for Disability Studies – 2015 Annual Conference, Atlanta, June 10-13 (CFP will be posted October 1st!)

From Ebola to Pertussis: A Look at Medical Conspiracy Theories

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.

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Rethinking Inclusion

Please check out my new piece for BLOOM, “In The Community, But Alone,” on the incomplete project of community living efforts for adults with ID/DD and multiple disabilities.  True social inclusion is much more than living in an anonymous house in a neighborhood!  

I am so grateful for the relatively recent development of government programs to ensure that people like my younger sister are no longer warehoused in institutions.  Still, there is much work to be done.  Individuals and their families deserve a much fuller form of social inclusion.  There is irrefutable evidence that social connections make us happier, healthier, and safer, and, as I see it, benefit society as a whole.  

I welcome any feedback on the piece, including ideas for how to effect on-the-ground changes.  That’s the goal, after all.

Week in Review: 06/29 – 07/06

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

Addressing Racial/Ethnic Health Disparities

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.

 

10 Things You Should Know About Racial and Ethnic Health Disparities

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.

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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

Disability and Women’s Health

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.

Disabilities and Mammograms by StateWomen with Disabilities and Pap Smears

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.