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

Vaccinations
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.

Politics
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.

Events
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

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!

Rethinking Inclusion

Please check out my new piece for BLOOM, “In The Community, But Alone,” on the incomplete project of community living efforts for adults with ID/DD and multiple disabilities.  True social inclusion is much more than living in an anonymous house in a neighborhood!  

I am so grateful for the relatively recent development of government programs to ensure that people like my younger sister are no longer warehoused in institutions.  Still, there is much work to be done.  Individuals and their families deserve a much fuller form of social inclusion.  There is irrefutable evidence that social connections make us happier, healthier, and safer, and, as I see it, benefit society as a whole.  

I welcome any feedback on the piece, including ideas for how to effect on-the-ground changes.  That’s the goal, after all.

Let’s Talk About Sex (and Disability)

I will begin this with a disclaimer: my research does not focus on sex.  It’s simply not my area and, for whatever reason, the subject hasn’t pulled me in as a scholar.  That said, sex and sexuality have been recurring themes in my dissertation fieldwork.  People want to discuss them.  Parents, families, educators, psychologists, physicians, policy folks.  As with any population, sex talk in the context of disability brings up anxieties, curiosities, and questions; it sparks discussion of risk (real or imagined), agency (ditto), gender, health, and the unknown.  While none of this is unique to a particular group, the lack of space for conversations surrounding sex and disability as a whole gives pause.   Continue reading

Autism And Alcohol: reflections on an anniversary

lizlewisanthro:

A beautiful piece on the intersections of alcohol, parenting, disability, and everyday life.

Originally posted on Living with Autism:

The Old Horns, Bradfield

I often mention pubs in my posts about living with autism. Perhaps I should clarify: Dylan’s drink is a pint of blackcurrant cordial made with tap water and served with ice and a straw. Dylan won’t touch anything with bubbles, or even a barely perceptible fizz, nor will he drink anything which is warm or tastes bitter. This leaves only water and non-carbonated soft drinks. As there are also rules about juice (no bits, cloudiness or tropical fruits) Dylan is limited to apple juice at home and blackcurrant when he’s out. There is no danger that he will ever be drunk or addicted to coca cola.

Dylan’s interest in pubs is, I think, primarily social. He enjoys the ambience of a pub garden in summer and an open fire in winter. He likes the quiet hum of voices and the sudden bursts of laughter, the activity…

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Guest blog post: ‘Coming to terms with disability’ by Meriah Nichols

lizlewisanthro:

Check out this guest blog post by Meriah Nichols on the always amazing Disability Visibility Project’s blog!

Originally posted on Disability Visibility Project:

There are so many awesome bloggers who write about disability. The Disability Visibility Project is fortunate to have several as our media partners. One of them is Meriah Nichols, creator of A Little Moxie blog.

Screen shot from A Little Moxie blog: http://www.meriahnichols.com

Check out one of her recent posts, “Coming to Terms with Disability in My Life”:

When I first see that phrase, I get an image in my head of a body wrestling with this unknown blob and the blob is “disability”. It’s like, we have this notion in our culture that “disability” is this big baddie, this sick, weak, unsexy unknown – and that we need to ‘overcome’ it, wrestle it down to the ground, stand with our foot on its chest and proudly say something Scott Hamilton-ish like, “there is no disability in life but a bad attitude.”

Or… we get to some point where we see the value in what people with…

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