“But I’m a family member.”  He gives me a blank look.  “A sibling,” I clarify.   “Really?” his eyes widen, surprised either at my statement or at his failure to recall.  I nod and smile, assuming the situation is settled.  I’m mistaken. 

I cannot believe that I got bounced from the family mixer.  I don’t even know what to think about it.

I find the words waiting, fieldnotes that I forgot I dictated after attending a disability conference for families and professionals.  I recall feeling so energized after attending a session on family, rights, and community inclusion, presented by a father from Spain.  I approached him afterward and introduced myself.  I explained about my research and touched on my family background as I always do – just enough to assure parents that I, too, am coming at this from the inside.  A few minutes in, we realized we had some friends in common in Guatemala, Argentina, and Boston.  “Of course we know each other,” he said, once we discovered the mutual connections.  “We are all family members.”

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Week in Review: Feb. 16-22

Each Monday, Disability Fieldnotes will publish a Week in Review to highlight key news and media pieces from the previous week that cover disability, anthropology, and related themes.  See something missing?  Let me know!  Readers are encouraged to fill in any gaps by adding additional links in the Comments section.  A little knowledge sharing never hurt anyone.

Here are a few highlights from last week:

Chemicals, Limited Regulations, and Neurodevelopmental Disabilities: Researchers from Harvard’s School of Public Health and the Mount Sinai Icahn School of Medicine published a piece in The Lancet Neurology arguing for a link between industrial chemical use and the alleged increase in neurodevelopmental disabilities.  The authors do not mince words, discussing the “pandemic of developmental neurotoxicity” and explicitly calling for aggressive regulations on chemicals.  This is a scary, yet not entirely surprising, study.  I’m curious to see its reverberations.  The article itself is paywalled, but you can find an overview at Disability Scoop, as well as here and here.

Real Talk – The (Economic) Costs Facing Families of Children with Complex Care Needs: Amanda Rose Adams’ piece for the NYT Motherlode blog, “The Price of a Child I Wouldn’t Let Go,” is a must-read for anyone interested in maternal and child health, public health, the political economy of health care, life after the NICU, and caregiving.  I would also recommend it for anyone interested in using narrative journalism to tell their story in a way that is simultaneously emotionally honest and unflinchingly political.  Adams combines her moving personal story as the mother of a child born with heart defects with a biting critique of escalating health care costs in the U.S.

“I once believed when our son’s health stabilized, our medical expenses would decline, but inflation proved me wrong” Amanda Rose Adams

Thoughts on Academics, Writing, and the World of Jargon: Joshua Rothman’s New Yorker blog piece, “Why Is Academic Writing So Academic?” is perhaps the best response I’ve seen to the recent NYT op-ed in which Nicholas Kristof chided academia for being insular, theoretical, and inaccessible.  Rothman sympathizes with both sides of the debate, but offers an excellent discussion of the system of academic without blaming its practitioners.

“The problem with academia isn’t that professors are, as Kristof wrote, “marginalizing themselves.” It’s that the system that produces and consumes academic knowledge is changing, and, in the process, making academic work more marginal” – Joshua Rothman

Depression Across Cultures: Writer Andrew Solomon’s story “The Refugees” was featured recently on The Moth Radio Hour.  This piece is an anthropologist’s dream: cross-cultural discussions of depression in a post-conflict society?  We can’t help ourselves!  Seriously, though, it’s well worth a listen.  Solomon is at the forefront of disability and mental health coverage in mainstream nonfiction, and I’m happy to see him continue to share his stories and insights.  If you haven’t already, you have to read his 2012 book Far from the Tree, which won the National Book Critics Circle Award for its unflinching and introspective portraits of parents of children with disabilities (and a few other groups, as well).

More Highlights:

The interweb was buzzing with the revelation that a sedentary lifestyle can lead to an increased risk of physical disabilities as one ages.  Did we not know this?  Doesn’t everyone have a neighbor/family friend/relative who lived to be 100 and was in great shape until the very end, and it was widely attributed to the individual’s activity level?  I appreciate this study as a scare piece to send to my less healthfully-minded loved ones, yet I can’t shake the feeling that this is an instance of science telling us what we already know.  As long as we use the knowledge to our advantage, I shall keep my further comments to myself.

Philadelphia’s Mayor signed a bill mandating that the city replace the outdated and offensive R-word with the term “intellectual disability.”  A small but important and highly visible step.  Perhaps I should send this link to the woman who cut my hair on Saturday, since she appeared to be unaware of this linguistic shift around us.

Full-time and contingent faculty banded together in a two-day strike at the University of Illinois at Chicago to demand a much-needed raise in adjuncts’ wages.

The National Council on Disability joined forces with a bipartisan group of 130 members of Congress to call for a much-needed increase in federal funding for Individuals with Disabilities Education Act (IDEA).  IDEA is the cornerstone of special education legislation and is critical for children with disabilities, yet is woefully underfunded.  Curiously, although Congress committed to fun 40% of the country’s public special ed bills when IDEA was enacted in 1975, the actual figure never topped 19%.

Texas gubernatorial candidate Greg Abbott tries to have his Conservative cake and eat it, too.   He switch-hits disability worlds, moving between a public story of triumph over his own disability and a political commitment to fighting the implementation of the ADA tooth and nail.  For more, read this recent editorial and also this piece from Austin’s very own Burnt Orange Report.

Introducing Fieldnotes

This blog has been months in the making.  More accurately, I thought about it for many months before I had the time and creative energy to sit down and get it started.  (For more on writing and time vacuums, I strongly encourage you to check out Megan McArdle’s recent piece for the Atlantic Monthly“Why Writers are the Worst Procrastinators.”)  Why, I had wondered for several years, was it so difficult to find discussion and analysis of disability issues in the contemporary U.S.?  Where was a centralized repository?  Why was disability grouped awkwardly in newspaper sections on “health,” “medicine,” and “science,” and what stories were erased by this categorization?  And what could be done to bridge the gap between academic, applied, and everyday understandings and experiences of disability?

Disability is everywhere and nowhere, visible yet all too often hidden from sight.  I wrestle with these realities, both as an anthropologist seeking to gain insights into the meanings and experiences of certain disability worlds, but also as the sister of a woman with multiple disabilities.  I hope to use this blog as a vehicle to probe these dual sides of disability today.  Indeed, disability is omnipresent in the media.  For a topic so marginalized, disability themes appear with what I find to be almost shocking frequency.  Still, I found myself looking for further discussion and analysis, as well as a way to consolidate links, data, and general ruminations in one spot.

This blog focuses on disability, which I use as an intentionally unwieldy and ambiguous category of difference, whether perceived or actual.  As an anthropologist, I am particularly attuned to the way that notions of disability change over time and across different groups. What is aberrant now might not be in future eras and vice versa.  Understandings of “good,” “right,” and “normal” bodies and minds shift and change shape, and reveal so much about broader social values, beliefs, and practices.  I use disability to chip away at the unstated and tacit assumptions about beauty, the good life, family, love, success, and more.  Disability is a moving target.  This page is part of my modest effort to track its path in one moment, one space, one admittedly vague social world.