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.)


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.”

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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Some background for two papers I have in the works.  The first is on the medicalization of childhood in the contemporary U.S.  The second, mother-blaming. Stay tuned.

Symptoms of Possible Disorders in Children: 

Appears to be shy
Likes to play by oneself
Prefers puzzles or televisions to stories
Sings off-tune
Spins in circles
Likes playing with trains or cars
Picky eater
Doesn’t like loud sounds
Temper tantrums
Does not always respond when name called
Does not always follow instructions
Needs to have instructions repeated
Trouble staying organized
Blurts out answers in class
Guesses when asked to solve a problem
On the go
Butts in on others’ conversations or games
If infant, has trouble falling or staying asleep
Mood changes
Difficulty expressing oneself if nervous or anxious
Dislikes brushing teeth
Bad at sports
Peculiar preoccupations
Dislikes tags on clothing
Prefers one-on-one play to groups

Strategies to Reduce the Risk of Various Childhood Disorders:

Don’t smoke in the house
Don’t have an underweight baby
Don’t have a preterm birth
Don’t have a baby who has to stay in the NICU
Don’t have a baby who needs oxygen
Don’t drink or use drugs while pregnant
Read to your child
Talk to your child
Don’t abuse your child physically or emotionally
Don’t vaccinate
Buy organic mattresses
Don’t eat fish while pregnant
Eat lots of fish while pregnant
Sleep with your infant
Make sure our infant sleeps alone
Give your child ample time to develop at her own pace
Utilize early intervention services (ages 0-3)
Ensure ears are clear, get tubes if necessary
Do not expose to anesthesia, a potential cause of learning disabilities
Listen to your pediatrician
Ignore your pediatrician, use specialists instead
Depending on the disorder, consider altering the race/gender/class status of child and parents

Effect of a science fair project on MMR vaccine beliefs in Marin County

I absolutely love this.

Dr. Jen Gunter

Background: Marin County, California has one of the highest rates of vaccine refusal in the country. The reasons for this are not socioeconomic, but rather appear to be based on fixed, false beliefs that the MMR vaccine causes autism, contains “toxins,” has mercury, or is associated with outcomes other than measles immunity. Exhaustive educational attempts via doctors, school officials, the CDPH (California Department of Public Health), the CDC (Centers for Disease Control) and some main stream media outlets have had minimal impact on the understanding of vaccine ingredients and safety in this vaccine refusing cohort. We assessed the impact of a poster created by two fifth grade students with educational information about measles and the MMR vaccine on beliefs about vaccine safety on attendees of an elementary school science fair at a school in Marin County with a 7.1% personal belief exemption rate.

Methods: Two fifth grade students were given…

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Update: StoryCorps/Disability Visibility Project!

Would you believe that the slots for StoryCorps interviews were filled in three minutes during last month’s registration?  Wow!

Here’s so good news: due to unambiguous demand, StoryCorps has opened up additional interview times.  People can sign up here Wednesday, January 7th at 10:00 a.m. Be warned, however, that these will likely go just as quickly as last time.

If you live in the Austin area and have a disability story to tell, please consider signing up!

Disability and Film

As someone who spends much of my time examining how, why, and when social understandings of disability change, film is an obvious target. Movies have an unquestionable power to expose us to people we may not yet know – to archetypes, composites, or even real people with actual stories. I have found film to be particularly useful for reaching individuals who may not have (yet) had or taken the opportunity to probe fundamental, if often unasked, questions about disability. The only catch? Finding good films.

There is a critical need for more positive and accurate portrayals of disability in film in order to break through stereotypes, assumptions, and stigma. Luckily, disability film festivals by and for members of this community are increasingly common. There might even be a disability film event in your own community!   Continue reading