Undiagnosed Disabilities: Some Preliminary Thoughts

What does it mean to be undiagnosed?  I ask this both in regard to the impact of diagnostic ambiguity and also the broader social and biomedical significance of a diagnostic void.  More specifically, I’m interested in what it means to give meaning to the lack of a diagnosis.  To not having a name, not having an access card to services or therapies, to the affective and logistical resources that ground people with disabilities and their families in broader worlds, worlds that reach beyond the parameters of their autobiographies, stretching outside the walls of their homes and the borders of memories.

My sister, Katie, was born in 1984.  She was slightly premature – but not alarmingly so – and had a seemingly mismatched collection of impairments and health conditions.  After her birth, doctors told my parents that she would not survive.  I vividly recall going to preschool as all of this unfolded and being congratulated for being a big sister.  “What’s your baby sister’s name?” asked my teachers and my classmates’ parents.  “She doesn’t have one yet,” I replied.  “The doctors aren’t sure if she will live, so my parents haven’t named her yet.”  I was four years old and did not realize the singular strangeness of this statement. Continue reading

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

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

Week in Review: September 21-27

The Autism-Vaccine Debacle
Remember Andrew Wakefield, the physician who fudged studies and almost single-handedly launched one of the biggest medical conspiracy theories of our time?  Well, he was in the news again.  The 3rd Court of Appeals in Texas ruled last week that Wakefield cannot sue a British magazine, editor, and journalist for defaming him in their exposé of his work.  Read more about the ruling here.

Disability, Work, and Poverty
The U.S. Senate Committee on Health, Education, Labor, & Pensions, chaired by Tom Harkin, recently released an important study on the significant barriers to employment and financial independence among people with disabilities, “Fulfilling the Promise: Overcoming Persistent Barriers to Economic Self-Sufficiency for People with Disabilities.”  One key finding: nearly one-third of all adults with disabilities live in poverty.  You can read more from Disability Scoop and the Huffington Post.

The American Journal of Epidemiology published a new study, “Maternal Intake of Supplemental Iron and Risk of Autism Spectrum Disorder.”  The original study is paywalled, but you can read a summary of the findings and argument here.  Although this is a potentially important development, I am always alarmed by the slippage between attributing disability to maternal actions and traditional mother-blaming.  This study sets of red flags for me, since it focuses in part on women’s iron intake prior to pregnancy and during breastfeeding, thus making some big assumptions about reproductive and decision-making.  For some thoughts on nutrition, disability, and mother-blaming, I strongly recommend this piece by a blogger and mom of a little girl with spina bifida.

The Ebola outbreak rages on in West Africa as the international community wonders what to do.  The always incredible team at Somatosphere has launched “Ebola Fieldnotes,” a series highlighting the possible and actual role of anthropologists and other scholars in curtailing the epidemic.  “Notes from Case Zero: Anthropology in the Time of Ebola” is an eye-opening piece by three anthropologists working on hemorrhagic fevers in the region, including on the current Ebola outbreak.  This fantastic piece would make an excellent short add-on to any medical anthropology syllabus and was even picked up by NPR. Additional pieces in the series include:

Down Syndrome
Data indicate that adults with Down syndrome develop Alzheimer’s at rates higher than previously realized, according to Disability Scoop.  Read more about the relationship between Down syndrome and Alzheimer’s here, here, and here.

Community Living
Last but not least, the Austin Chronicle recently published a shockingly one-sided cover story about the closure of a local State Supported Living Center.  I will write more on this shortly, but for now suffice it to say that I’m extremely alarmed that (liberal, Austin-dwelling, alternative weekly-writing) Texans seem to think that Olmstead never happened.  Indeed, the entire article made no mention whatsoever of Olmstead, community living Medicaid waivers, or even the ADA.  Unbelievable.

Ebola and the Case for Anthropology

As the Ebola outbreak in West Africa continues to grow, global fears are rising above the level of murmur.  Will the disease morph and become airborne?  Why do some local communities, who have literally never encountered this illness in the past, continue to deny its existence?  What can world powers throw at the problem to fix it – money, research, experimental drugs, or even military assistance?

These are all questions about containment, and much of the media coverage feeds on and foments public fear.  At its core, we should be asking one key question of both moral and practical importance: how can the international community work with local institutions to halt the spread of Ebola?  Within this question, there is a critical space for anthropologists and related specialists to illuminate the social and cultural facets of transmission.  Such knowledge can have critical and, indeed, lifesaving power to transform the current reality of containment efforts.  Rather than living up to its popular image as a purely academic pursuit – albeit an adventurous one – with little real-world value, the Ebola outbreak throws into high relief the continued need for anthropological insights on a global scale. Continue reading

Week in Review: September 7-14

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.

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.

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!)

Sunday Morning Medicine

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.

Continue reading