Anthropology of Autism

DailyDose_darkstroke Welcome to Medhum Mondays on the Daily Dose!

Some of you may know that in my other life, I (Brandy Schillace) am the managing editor of an international journal of cross-cultural health research: Culture, Medicine, and Psychiatry. This June 2015, the journal released a special issue on conceptualizing autism. This release featured articles that explore the social and cultural dimensions of autism across the globe, and reviewed the multitude of ways that families with children of autism navigate systems of social support and provide care for their children within their region and their community. As stated on the CMP blog, the entries “illuminate the human experience of caregiving and the often slippery, complex position of developmental disorders in the landscape of medicine, caregiving, and mental health treatment.” In that sense, then, they critically examine the human at the center of medicine, and thus intersect with our common mission in medical humanities. Today, I am reproducing an interview with the guest editor conducted by our blogista, Julia Knopes, at http://culturemedicinepsychiatry.com/–welcome Ariel and Julia!

 Dr. M. Ariel Cascio, guest editor of the special issue, is an anthropologist who studies the cultural and historical position of autism in Northern Italy. Here, the social media editor of Culture, Medicine & Psychiatry, Julia Knopes, interviews Dr. Cascio about the special issue, and her perspective on the future of cross-cultural autism research.

(1) Can you tell us a little about the upcoming June 2015 special issue?

The special issue, “Conceptualizing autism around the globe,” shares anthropological (and allied field) research on autism in Brazil, India, Italy, and the United States. We talk about “conceptualizing” autism as a way to counter the idea that autism “is” or “means” one specific thing. Sometimes autism means the diagnosis measured by a certain instrument (such as ADOS), sometimes it means a more broadly defined set of characteristics (such as those in the DSM), sometimes it means an individual identity, and so many more things. The articles in this issue explore how autism is conceptualized at several different levels: in national policy, in treatment settings, and in the home.

 (2) What’s something new you learned about the anthropology of autism while working on this special issue?

I’ve just enjoyed the opportunity to greater familiarize myself with the group of scholars who are pursuing the anthropology of autism, and to work alongside scholars whose work I have long followed.

(3) So how did you become interested in the study of autism?

I’ve been studying autism since 2008. I actually came to anthropology before I came to autism, and when I first began learning about autism, I saw it as rich for anthropological inquiry (isn’t everything!) because of anthropology’s strengths in focusing on lived experience, challenging deficit narratives of so-called “disorders,” and placing medicine and psychiatry in sociocultural context.

(4) What was it like doing fieldwork in Italy? How do Italians see autism differently than other places in the world?

I’ve studied the autism concept more in Italy than in any other place in the world, and I’m very grateful to everyone there from whom I learned – autism professionals, family members of people with autism, and people on the spectrum themselves. I could hazard comparisons with the literature that address perceptions in other parts of the world – and some of these comparisons come through in the special issue – but for now I would like to focus on the strength of the rich description of the Italian context without external comparison. As my article in the special issue shows, autism professionals tended to take a social model of autism, focusing on creating environments that were tailored to the needs of people on the spectrum and structured to help them learn.

(5) What are some of the challenges you’ve faced in studying autism?

As in many areas of inquiry familiar to readers of CMP, it can be challenging to communicate information about my study to people who study autism in other fields (clinical, psychological, social work, etc.). A lot of research about autism takes a positivist stance, whereas my research takes an interpretivist stance and focuses on autism as a concept whose meaning may vary rather than a diagnosis measured in a particular way. Nonetheless, I love talking about my research interests with a broad audience because in many contexts (especially in the U.S.), so many people have personal or professional interest in autism and we can always have interesting and stimulating conversations.

(7) What’s something you think would surprise non-anthropologists about the anthropology of autism?

I would imagine non-anthropologists would be surprised by the anthropology of autism for the same reasons they might be surprised by anthropology (or medical anthropology) in general. For example, they might be surprised that anthropologists study autism all over the world, particularly if they think of the autism concept as something that represents a universal set of characteristics and experiences that are unaffected by context. The articles in this special issue really show that context matters in all conceptualizations of autism, from Brazil to the United States, from national policy to the family home.

 (8) Where do you see the anthropology of autism heading next?

I see the anthropology of autism becoming more inclusive. In her commentary, Pamela Block expresses optimism that the anthropology of autism will increasingly include researchers who identify as autistic themselves, and I agree. In addition to including more researchers with autism, I anticipate that the anthropology of autism will increasingly work to include participants with higher levels of support needs (those whom some people call “people with low-functioning autism”), and delve deeper into their lived experiences as well.

This interview was originally posted on May 6th 2015 on the Culture, Medicine & Psychiatry blog: http://culturemedicinepsychiatry.com/2015/05/06/june-2015-issue-preview-interview-with-guest-editor-m-ariel-cascio/

You can access the special issue on Conceptualizing Autism here: http://link.springer.com/journal/11013/39/2/page/1

 

MedHum Monday Presents: Eula Biss’s On Immunity

DailyDose_PosterWelcome back to the Daily Dose and MedHum Mondays! Today, we review Eula Biss’s 2014 book, On Immunity: An Inoculation. Reboot Reviewer Anna Clutterbuck-Cook provides an insightful look at this work, and at the intersection of bodies, selves, and rights that makes up the debate over immunization. As presented recently on the Dittrick Medical History Museum blog, the drive toward vaccination was originally driven by community responsibility–and perhaps, now more than ever, that should be our focus.

Biss, Eula. On Immunity: An Inoculation (Graywolf Press, 2014)
Reviewed by Anna Clutterbuck-Cook

Recently, in preparation for a different book review, I read Alice Dreger’s One of Us: Conjoined Twins and the Future of Normal (Harvard U.P., 2004) in which the author encourages us to question the Western preoccupation with bodily autonomy as the prerequisite to a fully realized self. By centering the voices of conjoined twins, who almost universally understand their physical inter-relatedness as compatible with their individual senses of self, Dreger challenges singletons to question why physical autonomy has such a privileged place in modern political and medical cultures. What can conjoined persons teach us about what it means to be human?

I thought of Dreger’s work while reading essayist Eula Biss’ haunting On Immunity: An Inoculation (Graywolf Press, 2014). Like Dreger, Biss pushes us to reconsider our conception of individual bodies in relation to other bodies. In response to modern debates about the safety and efficacy of vaccination, On Immunity empathetically explores the anxieties of those who question inoculation — while ultimately challenging all of us to reframe the question in terms of community responsibility rather than individual safety.

Spurred by her personal experience weighing the pros and cons of vaccination for an infant son prone to allergic reactions and chronic sinus infections, Biss explores the history and science of immunity — and specifically of the human quest for immunity through vaccination. “It was not a good season for trust,” she writes of the first months of her son’s life — a time when the other mothers around her spoke bitterly of government ineptitude, media manipulation, and business interests compromising all sources of information. Like the women chronicled in Emily Matchar’s Homeward Bound (Simon & Schuster, 2013), the new mothers in Biss’ community struggle with questions of expertise and evidence — who can be trusted, and what type of evidence is good enough?

Biss offers no easy answers. Instead, she troubles our individualistic approach to immunity, challenging us to consider the possibility that we inoculate not primarily to protect ourselves but rather to protect the other. “Our bodies may belong to us, but we ourselves belong to a greater body composed of many bodies. We are, bodily, both independent and dependent,” she reminds us (126). While we may have the legal right to refuse inoculation for ourselves or our children, Biss argues that we may have an ethical responsibility to place the safety of more vulnerable bodies — infants, the elderly, those with compromised immune systems — ahead of that right.

On Inoculation is an incisive critique of the very American individualism that bolsters the case against vaccination despite the medical consensus on the safety and efficacy of inoculation as a tool for prevention of infection at the population level. The American discourse around vaccination has, Biss argues, too often been framed in terms of protection for the vaccinated — protecting the body from being invaded by impurity rather than protecting others from the impurities we may harbor. (After all, who among us would like to imagine our bodies as carriers of death rather than vulnerable to it?). Too often, “we” don’t need to rely on vaccination precisely because we imagine never intermingling our bodies with “them” — let alone imagining “we” might be the vector, not the victim, of disease. The discourses and practices around vaccination, as Biss points out, too often map the fault lines of class, geography, race, and health. To recognize ourselves (or our children) as candidates for inoculation is to recognize that we are, inexorably, part of a body politic within which we can both harm and be harmed.

Questions of bodily autonomy and physical purity are also deeply feminist concerns. As Biss reminds us, pregnant and nursing bodies — like conjoined bodies — trouble our Enlightenment notions of independence, vulnerability, and personhood. The classical liberal self is imagined as a self-reliant being, and thus threatened or compromised by the introduction of ill-health and interdependence — disease threatens not only our well-being but our very ability to be counted as persons, as citizens. To acknowledge ourselves as vulnerable, therefore, is to acknowledge our selfhood may be at risk.

One way to confront such a threat is to retreat into radical self-sufficiency (“it was not a good season for trust”) — but another would be to question the usefulness of that liberal model, and consider whom it serves and doesn’t serve; whom that model leaves vulnerable — and whether we are comfortable with a world that conceives of personhood in those terms. It is this latter approach that Biss tends toward in On Immunity, though she provides no clear path forward. Instead, her capacious and empathetic exploration of the history and culture of vaccination prompts us all toward deeper reflection.

MedHum Monday Presents: Adventures in Human Health

DailyDose_PosterWelcome back to the Daily Dose and Medhum Mondays! Today’s post (re)introduces a theme we’ve treated extensively in the past–medical museums, collections, and the story of health.

I work at the Dittrick Medical History Center and Museum in Cleveland, Ohio. If you’re not familiar, you may want to check out the instagram feed–because that really will give you a sense of the breath and depth. But hey, why not a few teaser images:

Medical Museums have a tendency to be grouped into the category of the macabre, likened to cabinets of curiosities, rather than understood in the broader concept of museums generally. There is nothing at all wrong with that designation, but like natural history museums and art museums, the Dittrick medical museum tells a story about the human condition (in this case, often the human medical condition) in the face of technology. That story is as varied as it is fascinating: after all, being sick in 1810 and being sick in 1910 were rather different experiences!

The Dittrick collection contains about 150,000 artifacts, plus rare books and ephemera. What does an amputation set look like? Why and how was blood-letting used? How about the first tech of germ theory–or the first x-rays? Disease prevention, diagnostics, reproduction and contraception, even forensics: the Dittrick museum tells the human story behind the medical technology (including the ethics–or not–of treatment procedures). Our programming follows suit, and in fact, this coming Thursday we are presenting our annual (free) lecture on contraception history. Deanna Day will discuss thermometers and contraception, the contested ways in which women historically attempted to control their fertility. A week from Thursday and Sachiko Kusukawa from Trinity College, Cambridge University will discuss Vesalius, anatomy, and the Fabric of the Human Body.

Join us–at the events (see here), at the museum, or online @DittrickMuseum on twitter and Instagram… and see how a medical museum delivers Medical Humanities!