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!]

Siblings and Disability – Part II

This is the second installment in a two-part series about siblings and disability. The first part can be found here.

What does Disability Mean for Typical Siblings?
First things first, I want to be very clear about one thing: existing research does not support the widespread assumption that having a brother or sister with disabilities leads to negative outcomes for the typical sibling or that it is an inherently negative experience. It simply does not support this claim. More to the point, the literature indicates that, as a group, siblings cannot be distinguished from their peers. (See this piece for more.) Moreover, one finds no causal link between disability and negative outcomes for siblings. This is critical.

Perhaps a more interesting question is this: why do some siblings have negative experiences a while others do not? What is the role of disability here? What might this teach us about facilitating positive sibling experiences with disability? How might this enrich understandings, both scholarly and applied, about families and disability?

Disability, Behaviors, and Sibling Experience
It is important to note that research indicates a possible link between negative sibling experiences and the presence of behavioral challenges in the brother or sister with disabilities. Sadly, based on my personal experience I can say – anecdotally – that this resonates. My sister’s disabilities became a much bigger challenge for me once she became self-abusive. It was difficult to take her to many public places, as she was prone to throwing herself onto the ground, banging her head, and getting into an emotional and bodily space that was difficult to break.

While I was never overly concerned by the responses of strangers, I simply did not feel comfortable showing letting most of my friends see this. It was too unsettling and, to be honest, violent. Did this place additional strains on me as a sibling, particularly as I moved through the social mazes of high school? Absolutely. By the end of high school, I essentially did not let anyone in the door if Katie was awake. This is tragic and should never have had to happen. Did it have a lasting impact on me? Nah. But if I could do it over again I would make sure that my childhood friends had maintained their relationships with my whole family as we got older. With supports, knowledge, and communication, I believe that our isolation could have been mitigated.

Moving Forward: Key Points Regarding Siblings and Disability
Ultimately, what do we know about the brothers and sisters of people with disabilities? Not enough. But there are some positive glimmers. In a nutshell, here’s what I would say:

First, disability must not be mistaken for the primary determinant of a sibling’s well-being. Families are complex, as are individuals of all ages. We have the right to this complexity in all of its messiness, quirks, strengths, weaknesses, successes, failures, difficult spells, mistakes, and chance. It is a fallacy to explain a particular trait or tendency in terms of having a sibling with disabilities. This has been used all too often as a scapegoat and, frankly, I’m tired of it.

Second, more studies need to focus on – or, at least, include – siblings. That’s it. We need to know more.

Third, research must account for the diversity of family types and individual experiences. We need to unpack big, scary categories like race, ethnicity, and class. These are all too often ignored or glossed over in disability research in general, which I see as a massive problem. Our work must reflect our world. As a researcher and a sister, I have to stress the diversity of both family setups and sibling relationships. These are not monolithic categories, which makes (or should make) it difficult to generalize. For instance, my experience was shaped significantly by the fact that my sister is my only sibling. Also, we were four years apart. Someone with a sibling 10 years younger would likely have a different dynamic.

Four, just like parents, siblings deserve access to a community of peers. We must not be isolated. Family disability organizations need to prioritize sibling programs – not just once a year at the retreat, but as a regular and ongoing feature.

Five, siblings need self-determinism and independence. We need to be able to speak for ourselves in the literature, rather than continue to be told how we should think/feel/act. We need to muddy the waters and break out of the biases that continue to skew assumptions of what it means to have a brother or sister with disabilities.

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)

Siblings and Disability – Part I

Disrupting Assumptions and Digging Deeper
Growing up with a sister who had CHARGE syndrome and was deafblind, there were many times when I felt alone in my experience. While I did not know other siblings in similar situations, there was never a shortage of adults who thought they understood how my sister had impacted me. For instance, I was “supposed” to feel jealous of the attention she received or anxious that I, too, might somehow contract her disabilities. Those are the two that stand out in my mind, but I recall a slew of well-meaning “experts” – whether in person or in the literature on families and disability – whose models of “typical” experiences for typical siblings never matched my reality.

I am now a disability researcher and, although my work does not focus on siblings, the topic remains important to me and is one of my many side projects. Below, I want to dispel a few myths about sibling experiences. This is the first in a two-part series, so please spread the word and stay tuned. I welcome comments from other siblings and am happy to share more of my work and thoughts on the subject, upon request.

Why Siblings?
Siblings are a neglected topic in the disability research, despite the fact that the sibling relationship can easily be the longest one many of us have. Why have we been so largely neglected in the literature on families and disability? While it is widely recognized that parents of kids with disabilities need to connect with other moms and dads in similar situations, this is all too often overlooked for siblings. As someone who never connected with other siblings until adulthood, I’m going to say categorically that this is not acceptable. Everyone deserves to know that they are not alone.

Why Now?
The contemporary social and historical context of disability has created a new era of long-term sibling experiences. As Americans with disabilities live longer, there are new roles for brothers and sisters. We are in the age of de-institutionalization (except in Texas, ahem!) and community living, which means that many adults with disabilities now have different living arrangements than in the past. Finally – and I cannot stress this enough – social media has engendered levels of organization and community formation among siblings that were unimaginable until quite recently. Siblings can connect with one another, network, share stories, brainstorm, and disseminate the critical knowledge gained from their experiences.

Existing Literature: Issues and Inconsistencies
When studying this body of literature, the first thing we see is a history of scant attention to typical siblings. What’s that all about?! (I have some thoughts.)

The next and perhaps most salient trend that emerges is the widespread assumption that having a sibling with disabilities is a negative experience. But based on what evidence? As someone trained in research methods, I have serious questions about many of the existing studies. All too often, I see siblings of people with disabilities pitted against a hypothetical, ideal sibling relationship – one I have rarely witnessed in real life. For instance, researchers lament the lack of emotional closeness between typical siblings and their brothers or sisters with disabilities. But how do they define closeness? What do we mean hereby intimacy and condoned or socially validated relationships? And are we so certain that typically developing siblings share such innate intimacy? These questions demand further inquiry.

I am also concerned by the fact that positive sibling outcomes are not prioritized in much of the research. Again, this relates to the underlying assumption that disability is an innately negative experience likely linked to (or correlated with) undesirable outcomes. Any good researcher knows that, if you go looking for a particular outcome you can likely find it. In regard to much of the work on siblings, I suspect this is precisely what has happened.

The next post in this series will outline some perhaps surprising findings about sibling experiences, as well as critical areas for future research. Stay tuned!

Diagnosis On My Mind

As a disability sibling and scholar, my professional and personal lives blur.  They unfold within a tension and, when I’m in the thick of interviews with family members or am sifting through my existing data, I necessarily engage with the words and experiences more fully – or simply differently – than if I had the luxury of empathetic detachment.  The stories cut just too close to the quick.  The modern term of art would be trigger warning: my data, my project, is one continuous trigger warning.  But that’s so dramatic.  Lives happen, experiences unfold, and we deal with the affective and practical worlds in which we land.  So I sweat out the memories in my long runs or watching an episode of “Parks and Recreation” on Netflix at the end of a day of recording and coding data.  I knead the old negativity away as I prepare pizza dough from scratch, marveling as it doubles in size, or baking chocolate chip cookies.  I do what I can to detoxify the old stresses, doubts, and what-if’s of my own family’s story as I listen to others share theirs.  It’s a balancing act, but it’s the one I chose.

My research examines family experiences with rare and undiagnosed disabilities.  This is an incredibly important and largely unrecognized population numbering well into the millions, and my work is part of a slowly stirring effort to raise awareness about this world.  On both a personal and intellectual level, I am fascinated by the possibilities for diagnostic identity – for reframing a lack of diagnosis not as an individual anomaly (often with heavy moral undertones), but rather as an expansive reality that is neither a negation of modern biomedicine’s promises nor an inherently isolating and ambiguous embodied reality.   Continue reading

Call for Participants

I am currently conducting extended qualitative research for my dissertation in anthropology and I am looking for parents, siblings, family members, caregivers, allies, and professionals who would be willing to participate in a short interview about their experiences with disability and diagnostic journeys.  My work examines changing understandings of multiple disabilities, and I am especially interested in rare and undiagnosed syndromes.  What does it mean to be part of a small or unrecognized disability population?  How can it be that up to 40% of all children with disabilities lack a clear diagnosis, yet there is such little knowledge of their experiences or those of their families?  What might society learn from your story and your family’s diagnostic odyssey, or from your insights or struggles as a professional serving this group?     

My research and goals are intimately shaped by my experiences as a sibling, since my younger sister has CHARGE syndrome.  CHARGE occurs in approximately one in every 8,000-10,000 births and is now a leading cause of deafblindness, yet very little was known about the diagnosis when my sister was young.  She lacked a diagnosis for much of her childhood and seemed to fit in nowhere.  I now know that stories like ours are far from unique, and I am deeply committed to using my work to gain a better understanding of and also spread awareness about such complex encounters with disability and diagnosis.  

My research is grant-funded and I have received IRB approval from my home institution, The University of Texas at Austin.  Unless specifically requested by participants, I will use pseudonyms for all interviewees in any notes, publications, or presentations based on this research to ensure anonymity.  

If you have any questions or would be interested in speaking with me, please contact me at emlewis [at] utexas [dot] edu.  Your participation is greatly appreciated!    

Thank you!

Sibling Resources

I’ve had sibling issues on my mind recently.  This week, I am so excited to have the opportunity to meet the writer Rachel Simon, whose memoir Riding the Bus with My Sister  traces her relationship with her sister, Beth, who has intellectual disabilities.  Riding the Bus is something of a modern classic in disability literature and is particularly notable for its focus on the sibling relationship over the life course.  It is truly a must-read.

In addition to this upcoming event, I have been reflecting over a recent (impromptu) conference discussion I led on sibling issues.  I was volunteering at the annual disability conference last weekend when the scheduled speaker canceled at the last minute.  I received a call asking if I could fill in as I drove to the event, literally 20 minutes before the panel was to begin.  Although I was unprepared, in terms of handouts or anything beyond a vague outline of what to discuss, I felt pulled in my the audience.  There were mainly parents, which intrigued me, but a few adult siblings also spoke up.  I would love to help create more local spaces for sibling voices, moments for us to share our thoughts and experiences without having the narratives shaped by others.

There is so much to learn from us, both about disability dynamics in the family and also, more generally, about what it means to be a sibling.  I am adamant that disability sibs must not be pathologized – marked with a big red ‘D’ for disability! – since I am unconvinced that our anxieties, sadness, confusion, or other responses are distinctive to the disability experience.  I struggle with toeing the line between acknowledging the specificities of my sibling experience while refusing to be other-ed, to be set apart from the supposed mainstream.  Are aspects of our lives distinctive and do we perhaps feel underlying connections with other sibs?  Sure, at least some of the time.  Does that make us fundamentally different from our peers?  Does it follow that we should define ourselves – or our families, for that matter – largely in terms of disability, to mark ourselves as “different” from the mainstream?  Absolutely not.

Below, I’ve attached a short list of online resources for and about sibs, which I will be sending out to the people who attended my recent panel.  It is worth noting that nothing like this existed when I was young (if only because the internet was in its infancy!), yet I vividly recall longing to find a community of other sib.  Empowered, honest, questioning sibs.  Sibs living full lives, sibs who insisted on carving a space for themselves.  If you know anyone with children or other family members with disabilities, please send these resources their way.

 

Resources for Siblings of People with Disabilities

Sibling Leadership Network

The Sibling Leadership Network (SLN) seeks to provide siblings with information, support, and advocacy tools. Their website has a wealth of good research on the sibling experience, which might be of interest to both siblings and parents. It also includes a list of blogs by sibs.

The SLN has this resource page for information regarding young sibs, including the link to its SibKids listserve. It also has this page for information for teen and young adult sibs, and hosts SibTeen, a private Facebook page for sibs in this age group.   For adult siblings, SLN resources can be found here. SLN cohosts SibNet, a fantastic listserve for adult sibs, with the Sibling Support Project.

SLN has an active Facebook and Twitter presence.

Sibling Support Project

The Sibling Support Project (SSP) is a national organization directed by Don Meyer, who is essentially the guru of all things sib. I would strongly encourage parents and siblings alike to learn more about this group, as this type of resource would have been an incredible to asset to me when I was younger. No sib should feel like they are alone or like their experience is singular; groups like the Sibling Support Project help ensure that sibs can come together and not fall into feelings of isolation.

Don Meyer and the SSP are best known for their SibShops, a trademarked model of sibling support and celebration. Click here to search for a SibShop near you. (For those of us in the Austin area, I should note that SibShops are fairly limited. I would love to see these expand in the coming years.)

SSP offers a short list of sibling-related books and movies here and also information regarding disability-related websites and resources here. It also maintains an active Facebook page.

BLOOM

This fantastic Canadian magazine and blog for family members of people with disabilities has an excellent collection of pieces devoted to sibling issues.  In terms of disability publications, I find BLOOM to be such a breath of fresh air.

The Arc

The national branch of The Arc hosts a National Sibling Council, which you can learn about here.  This offers networking and support opportunities, primarily for adult siblings.    

Sibs

This UK-based organization is another excellent resource for siblings, as well as for parents who are curious about the sibling experience.  The UK has long been a hub of innovation in disability research and scholarship, and this is no exception.

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

Week in Review: March 23-30

Rising Rates of Autism Diagnoses
The rising prevalence of autism diagnoses continues unabated, according to the March 28 Weekly Morbidity and Mortality Report from the CDC.  Based on recent findings by the Autism and Developmental Disabilities Monitoring Network, one in 68 U.S. children now have an Autism Spectrum Disorder (ASD) diagnosis.  Rates are significantly higher for boys than girls (one in 42 versus one in 189, respectively), and there are substantial racial disparities.  White children are much more likely to be diagnosed with ASD than either Hispanic or non-Hispanic black children, yet (no surprise here) are markedly less likely to be diagnosed as having both ASD and intellectual disability than their minority peers.  These disparities demand further research from social scientists and other scholars concerned with issues of power, race, and inequality.  You can read more on the new ASD numbers here, here, and here, and the CDC has even put together a digital press kit on autism.  Also, NPR offers an important reminder not to equate rising rates of diagnoses with an epidemic in autism spectrum disorders themselves.  The NYT has what looks to be a good piece on this subject, but I’ve been paywalled out of it for now.  (Anyone interested in the social world of diagnostic trends should check out Canadian philosopher Ian Hacking’s work, which offers important insights into the current autism “epidemic.”)

Conspiracy Theories
Every time I start to think that Americans are more intelligent and rational than I give them credit for, something brings me back to my sense.  I can always count on my fellow countrypeople for that.  According to a recent study by J. Eric Oliver and Thomas Wood, published in a JAMA Research Letter, nearly half of all Americans believe in at least one medical conspiracy theory and – get this – a full 20% believe that the government continues to push vaccines in children, despite its knowledge of a link between vaccinations and autism.  I’m actually scared to broach this subject with people I know for fear of what they might say.  Read more here, here, here, and here, but don’t forget that these liberal media sources are part of the problem!  Kidding.

Study Argues that Autism Begins During Pregnancy
A team of University of California researchers published a potentially and highly publicized piece in the New England Journal of Medicine, “Patches of Disorganization in the Neocortex of Children with Autism.”  The team examined the brain tissue of deceased children and youth with ASD and found significant atypical variations.  This study offers an important and apparently still much-needed counterpoint to the conspiracy theorists and anti-vaccination camp.  You can read the BBC’s coverage here.

More News

Although it might not surprise many of us, new data indicates that children with disabilities are more likely to be restrained, secluded, or passed on to law enforcement than their non-disabled peers.

California is currently experiencing its biggest measles outbreak in decades, prompting concerns about the reappearance of diseases that were deemed a thing of the past.

The Arc celebrated the close of Developmental Disabilities Awareness Month with Let’s Go Out! on March 29th.  This was a day for people with disabilities and their families to enjoy public outings in their communities.  It saddens me that such an event is still necessary, but I applaud everyone who participated.

Week in Review: Feb. 24 – March 2

Here is a quick overview of some of the main disability news stories from the week.

Prenatal Testing: A New DNA Test Announced  The New York Times published a piece excitedly praising a new frontier in prenatal testing options.  These DNA tests are not yet widely used, nor are they covered by insurance providers at this time, but the physicians interviewed were quite hopeful.  The good news?  These tests are noninvasive and appear to be more accurate than the currently available options, particularly in regard to diagnosing Down syndrome.  The bad?  The article makes no mention whatsoever of the fact that tests by their very nature portray Down syndrome in simplistic terms.  In that sense, they reify Down syndrome and other disabilities as stagnant negative outcomes with no nuance, variation, or perhaps even hope.  They medicalize to the extreme, erasing the social forces that shape individual and family experiences of and with disability.  Should parents have access to such tests?  Of course.  Should the NYT know enough to include a bioethicist or disability rights scholar in an article about such innovative technology?  Absolutely. Continue reading