Week in Review: July 3-9

There were some interesting news pieces this week. I’m particularly on the lookout for stories on that topic, since I will be giving a talk on race, disability, and health next month. If you see anything, please send it my way. Also, for those of you in the northeast, don’t forget about the First Annual Disability Pride Parade in New York on Sunday!

Without further ado, here is my curated list of disability news highlights from the past week:

Motherhood

A Kindergarten Form Asks: Vaginal Birth or C-Section. Why?” (Cara Paiuk): I absolutely loved this piece – a rant, in many ways – in which Paiuk recalls her dismay at a kindergarten registration form that asked whether her child was delivered vaginally or via c-section. This, to me, is the perfect convergence of pop disability diagnostics and mother-blaming: the absurd notion that school nurses or other officials might link a child’s deliver, five years earlier, to certain traits or tendencies in the first year of grade school. Unbelievable. And scary that no other parents at the school raised any questions about this false connection.

Vaccines

California, Camelot and Vaccines” (Frank Bruni): Bruni shares a curious history of communications with Robert Kennedy Jr, environmentalist and dangerously powerful voice against vaccination. My favorite quote from the piece: “Although the Internet could be making all of us smarter, it makes many of us stupider, because it’s not just a magnet for the curious. It’s a sinkhole for the gullible.”

The Challenge of Public Dissemination” (EJ Sobo). A medical anthropologist thinks through her recent experience of having her research on vaccination beliefs and practices picked up – and then misinterpreted – by the popular press. A great look at anthropology for multiple audiences and the shifting nature of dissemination in a digital age.

Race and Disability

Without Addressing Disability We’ll Never Make Meaningful Progress in Ending Police Violence” (Milwaukee Community Journal). An important piece about disability and intersectionality, a topic I’m seeing more and more.

The Racial Imbalances of Special Education” (Weston Phippen): Experts speak out against recent study arguing that Black and Latino students are not overrepresented in special ed, contrary to widespread belief. Curiously, the social and cultural dimensions of (over)diagnosis don’t make it into the piece until almost the end.

NYPD Officers Accused of Beating Teen with Autism Assumed He Was ‘Up to No Good’: Lawyer” (Andres Jauregui). A Black teen with autism was allegedly beaten by police for no reason in front of his home last fall. New York’s finest are at it again.

Misc.

Of all U.S. Police Shootings, One-Quarter Reportedly Involve the Mentally Ill” (NPR). The headline says it all

Disability, Anthropology, and a Sister’s Ambivalence” (Liz Lewis). My recent blog piece on my ambivalent relationship with disability, both as a concept and also a central aspect of my family’s autobiography. I hesitated to write this and to put it out there, but it has touched a nerve with many readers.

Celebrating 25 Years of the ADA” (Alan E. Guttmacher). 25 years and going, but we still have much to do!

Disability Fieldnotes Digest: Jan 24-29

Politics and Current Events

Disability Advocates Fight Disabled Governor” (NPR’s Here and Now)

Austin-based disability rights activist Bob Kafka reflects on Governor Greg Abbott, the first U.S. governor since George Wallace to use a wheelchair in office.

Execution of Warren Hill ‘Shakes the Foundation of our Legal System for People with Intellectual Disabilities” (The Arc)

On January 27, the state of Georgia executed Warren Hill, a convicted murderer known to have a lifelong intellectual disability. Despite past Supreme Court rulings that the death penalty is unlawful for individuals with intellectual disabilities, only Justices Sotomayor and Breyer voted for a stay of execution. This is truly a shocking story. Continue reading

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.

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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.

Addressing Racial/Ethnic Health Disparities

I am excited to announce my recent piece for Somatosphere.net, “Addressing Racial/Ethnic Health Disparities: A Conference Report.”

The piece offers a close snapshot of an important conference held at the University of Texas in the fall, which brought together interdisciplinary experts from across North America to discuss future possibilities for social medicine.  It was one of the most intellectually stimulating events I have attended, and it became an important jumping off point for new areas of my own research.

The list of speakers included Dorothy Roberts, Lance Gravlee, Jonathan Metzl, Helena Hansen, and many others.  Several UT faculty with whom I work participated in the working groups on the second day of the event, which offered a collaborative space to brainstorm the role of transdisciplinary efforts in medical education and practice.

I would encourage anyone who is interested in issues of race and/or health to read this piece and learn more about the conference participants.  Please keep any eye out for my companion piece on the need for research on the intersections of race, disability, and health, which is a markedly understudied area.

 

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.

Going Public

As a scholar and a sibling, I am deeply committed to producing work that is relevant to multiple communities, both applied and intellectual.  I am, in fact, wholly unconvinced that there needs to be a split between the two.  Over the course of my graduate career, I have found myself increasingly frustrated with the arcane language of my discipline, which necessarily closes many anthropological insights off from a general readership.  Linguistic gatekeeping is alive and well, yet I’m not sure whom it serves.  Must intellectual rigor be cloaked in indecipherable prose and demarcated clearly from real-world application?  I’m not sold.

Anthropologist and disability scholar Rayna Rapp on the “academic-activist interface.”

“Be prepared to continually learn how to make your research and teaching resources more accessible” – Rayna Rapp

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