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: July 3-9

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:

Motherhood

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.

Vaccines

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.

Misc.

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!

Week In Review: June 13-18

Week in Review is back! Disability Fieldnotes, too. What can I say? I’ve been busy.

This was a particularly jam-packed week in disability news and events, thanks in part to last weekend’s incredible Society for Disability Studies conference in Atlanta, which I was incredibly fortunate to attend. I’m still reeling from the experience – in a good way, that is – and am working on a few blog posts, so keep an eye out. For now, however, the news.

Mental Illness
It’s Not About Mental Illness: The Big Lie That Always Follows Mass Shootings by White Males” (Arthur Chu)
As an anthropologist and disability scholar, I am fascinated by tendency to explain despicable acts of violence by white perpetrators in terms of mental illness. A great read.

Society for Disability Studies Conference
This conference blew me away. Did you miss it? Nah, you just think you did. You can read live tweets from the incredible Digital Access Facilitation Team (DAFT, of which I was a part) at #2015SDS.  DAFT mastermind Adam Newman is in the process of archiving the Twitter coverage on Storify, so stay tuned for that. An incredible digital access initiative.

Disability Rights
For Individuals With Disabilities, There’s No Place(Ment) Like Home” (Michaela Connery)
A piece on the crisis of disability housing in the U.S. Keep an eye out for more from this author.

Education
New Federal Report Explores Ways to Break the School to Prison Pipeline for Students with Disabilities” (National Council on Disability)
U.S. Schools Must Stop Excluding Children with Disabilities” (David M. Perry)

News
When it comes to the case of Gypsy Rose Blancharde, the supposedly-disabled-but-not young woman who recently murdered her mother, I am biased. First, I’m writing a piece on disability and mother-blaming, so I’m familiar with Munchausen by Proxy, a condition with which mothers literally create illness or disability in their children. It’s an accusation sometimes leveled at moms whose children’s disabilities and medical conditions cannot be explained, and it first made the ranks of the DSM in 2013. Part of my fascination with Munchausen is that it illustrates that – contrary to some well-known anthropological beliefs – we do not, in fact, have to look to other cultural frameworks to find exceptions to the supposedly innate nature of mother love.

In addition to my interest in Munchausen, I’m also from Springfield, MO, the Ozarks’ city closest to the Blanchardes. I’ve always regarded the area as a hotbed for truly bizarre, NCIS-style crimes, and this fights right in. I will be writing more on this next week. For now, here is some coverage from a few of my hometown news outlets:

Was Gypsy Blancharde a Victim of Munchausen by Proxy” (Stephen Herzog)
“Newspaper Report Shows Blanchardes Were Claiming Medical Issues in 2001” (Gene Hartley)
Around the Web: Notable Coverage of Blancharde Case” (Thomas Gounley)

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 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).

Disability at the Margins: The Case of Guatemala

Although my current work focuses on disability in the United States, this is a relatively new development for me.  Indeed, until very recently I assumed that my academic and research career would center on disability in international contexts, particularly in Latin America.  This was more than an anthropological fetishizing of the other.  Rather, my various research and volunteer experiences abroad had left no doubt that international disability rights was a pressing issue and that millions of people were suffering, pushed to the social, economic, and medical margins of our world.  

It was with great curiosity, then, that I read a recent news blurb by Disability Rights International on the changing plight of people with disabilities residing in a Guatemala City psychiatric hospital.  I conducted ethnographic fieldwork in Guatemala during the summers of 2009 and 2010, and was frankly shocked to see any coverage of disability issues in the country.  To say that Guatemalan disability services are inadequate does not begin to describe the situation.  Although a few grassroots efforts, such as the incredible Guatemalan Foundation for Children with Deafblindness – Alex, have been extremely successful in advocating for certain diagnostic populations, the broader disability climate is bleak.  There are essentially no public special education programs in the country of over 15 million, leaving most children with disabilities in their families’ full-time care.  Shunning and stigma are the norm, and I heard story after story of children being locked in their families’ homes or of formerly close families ripped apart, grandparents refusing to see their own grandchildren simply because they were born with disabilities.  The fears of disability as or caused by contagion or resulting from medical disaster loomed large, complicated by woeful inadequacies in maternal and child health, widespread malnutrition, and restricted access to care.  Although the underlying tone of marginalization and neglect was sadly familiar to my personal and professional experiences in the U.S., the scope of the problem fell into another category altogether. Continue reading

Week in Review: Feb. 16-22

Each Monday, Disability Fieldnotes will publish a Week in Review to highlight key news and media pieces from the previous week that cover disability, anthropology, and related themes.  See something missing?  Let me know!  Readers are encouraged to fill in any gaps by adding additional links in the Comments section.  A little knowledge sharing never hurt anyone.

Here are a few highlights from last week:

Chemicals, Limited Regulations, and Neurodevelopmental Disabilities: Researchers from Harvard’s School of Public Health and the Mount Sinai Icahn School of Medicine published a piece in The Lancet Neurology arguing for a link between industrial chemical use and the alleged increase in neurodevelopmental disabilities.  The authors do not mince words, discussing the “pandemic of developmental neurotoxicity” and explicitly calling for aggressive regulations on chemicals.  This is a scary, yet not entirely surprising, study.  I’m curious to see its reverberations.  The article itself is paywalled, but you can find an overview at Disability Scoop, as well as here and here.

Real Talk – The (Economic) Costs Facing Families of Children with Complex Care Needs: Amanda Rose Adams’ piece for the NYT Motherlode blog, “The Price of a Child I Wouldn’t Let Go,” is a must-read for anyone interested in maternal and child health, public health, the political economy of health care, life after the NICU, and caregiving.  I would also recommend it for anyone interested in using narrative journalism to tell their story in a way that is simultaneously emotionally honest and unflinchingly political.  Adams combines her moving personal story as the mother of a child born with heart defects with a biting critique of escalating health care costs in the U.S.

“I once believed when our son’s health stabilized, our medical expenses would decline, but inflation proved me wrong” Amanda Rose Adams

Thoughts on Academics, Writing, and the World of Jargon: Joshua Rothman’s New Yorker blog piece, “Why Is Academic Writing So Academic?” is perhaps the best response I’ve seen to the recent NYT op-ed in which Nicholas Kristof chided academia for being insular, theoretical, and inaccessible.  Rothman sympathizes with both sides of the debate, but offers an excellent discussion of the system of academic without blaming its practitioners.

“The problem with academia isn’t that professors are, as Kristof wrote, “marginalizing themselves.” It’s that the system that produces and consumes academic knowledge is changing, and, in the process, making academic work more marginal” – Joshua Rothman

Depression Across Cultures: Writer Andrew Solomon’s story “The Refugees” was featured recently on The Moth Radio Hour.  This piece is an anthropologist’s dream: cross-cultural discussions of depression in a post-conflict society?  We can’t help ourselves!  Seriously, though, it’s well worth a listen.  Solomon is at the forefront of disability and mental health coverage in mainstream nonfiction, and I’m happy to see him continue to share his stories and insights.  If you haven’t already, you have to read his 2012 book Far from the Tree, which won the National Book Critics Circle Award for its unflinching and introspective portraits of parents of children with disabilities (and a few other groups, as well).

More Highlights:

The interweb was buzzing with the revelation that a sedentary lifestyle can lead to an increased risk of physical disabilities as one ages.  Did we not know this?  Doesn’t everyone have a neighbor/family friend/relative who lived to be 100 and was in great shape until the very end, and it was widely attributed to the individual’s activity level?  I appreciate this study as a scare piece to send to my less healthfully-minded loved ones, yet I can’t shake the feeling that this is an instance of science telling us what we already know.  As long as we use the knowledge to our advantage, I shall keep my further comments to myself.

Philadelphia’s Mayor signed a bill mandating that the city replace the outdated and offensive R-word with the term “intellectual disability.”  A small but important and highly visible step.  Perhaps I should send this link to the woman who cut my hair on Saturday, since she appeared to be unaware of this linguistic shift around us.

Full-time and contingent faculty banded together in a two-day strike at the University of Illinois at Chicago to demand a much-needed raise in adjuncts’ wages.

The National Council on Disability joined forces with a bipartisan group of 130 members of Congress to call for a much-needed increase in federal funding for Individuals with Disabilities Education Act (IDEA).  IDEA is the cornerstone of special education legislation and is critical for children with disabilities, yet is woefully underfunded.  Curiously, although Congress committed to fun 40% of the country’s public special ed bills when IDEA was enacted in 1975, the actual figure never topped 19%.

Texas gubernatorial candidate Greg Abbott tries to have his Conservative cake and eat it, too.   He switch-hits disability worlds, moving between a public story of triumph over his own disability and a political commitment to fighting the implementation of the ADA tooth and nail.  For more, read this recent editorial and also this piece from Austin’s very own Burnt Orange Report.