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!]

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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!

Disability Fieldnotes Week in Review: June 19-25

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.

Disability Rights
Sowing New Needs in the Garden of Disability Rights Activism” (Emily Ladau)

Economic Well-Being
The IRS released guidelines for the Achieving a Better Life Experience (ABLE) Act, which can be found here.

Health
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)

Disability Fieldnotes: January 17-23

Your weekly dose of disability news coverage, commentary and debates.  Enjoy!

Disability and Health Disparities

Hypertension More Prevalent in Individuals with IDD” (The Arc)

Race and Health Disparities in Adults With Intellectual and Developmental Disabilities Living in the United States,” Haleigh M. Scott and Susan M. Havercamp (Intellectual and Developmental Disabilities)

Vaccines and Infectious Disease

When Measles Spreads From Disneyland, It’s a Small World After All,” by Rachel Rabkin Peachman (NYT Motherlode) 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.

Continue reading

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).