Disability Fieldnotes Week in Review: June 19-25

Here are some of the disability news features that I found most interesting from the past week. Please send other suggestions my way!

Disability and Race
Claim: Minorities Underrepresented in Special Education” (Michelle Diamond)
More Minority Students Should be in Special Ed, Study Says” (Joy Resmovits)
Minorities are Disproportionately Underrepresented in Special Education: Longitudinal Evidence Across Five Disability Conditions” (Paul L. Morgan et. al)
This study, published in Educational Researcher and then featured on Disability Scoop, examines the common assumption that children of color are overrepresented in U.S. special education programs. Surprisingly, the authors found the contrary to be true. I would love to hear more on this topic, as there remains much work to be done on the intersections of disability and race.

Disability Rights
Sowing New Needs in the Garden of Disability Rights Activism” (Emily Ladau)

Economic Well-Being
The IRS released guidelines for the Achieving a Better Life Experience (ABLE) Act, which can be found here.

Health
No Link Between C-Sections and Autism, Study Says” (Catherine Pearson)
California Law to Curtail Vaccine Exemptions Clears Hurdle” (Rebecca Plevin)
California Lawmakers Vote to Remove Vaccine Exemptions for Schoolchildren” (Scott Neuman)
California Passes Bill to Require Vaccines and Ban Religious Exemptions” (Anna Diamond)

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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

Week in Review: 06/29 – 07/06

Sports, National Heroes, and Recognition of Difference

Disability issues loomed large in the news this past week, thanks in part to the incredible performance and surge in popularity of USMNT goalie Tim Howard at the World Cup.  I wrote about this in my recent post, Let’s Talk About Tim Howard, which includes a collection of links to recent media attention to this brilliant athlete who also happens to have Tourette’s syndrome.

The State of Special Education

DisabilityScoop published an important piece for anyone interested in the educational realities of children with disabilities, “Most States Deficient in Special Education.”  The U.S. Department of Education has announced new measures for assessing special education performance at the state level.  Based on data from the 2012-13 school year, a mere 15 states meet the current requirements.  California, Delaware, Texas, and the District of Columbia received a “Needs Intervention” classification.  These data were released in conjunction with Arne Duncan’s announcement of significant changes to come in the oversight of special education, which you can read about here and also in a more nuanced piece here.  The Huffington Post also published a piece on topic here.

Does Disability Make Somebody Homicidal?  Answer: No! Continue reading

Disability at the Margins: The Case of Guatemala

Although my current work focuses on disability in the United States, this is a relatively new development for me.  Indeed, until very recently I assumed that my academic and research career would center on disability in international contexts, particularly in Latin America.  This was more than an anthropological fetishizing of the other.  Rather, my various research and volunteer experiences abroad had left no doubt that international disability rights was a pressing issue and that millions of people were suffering, pushed to the social, economic, and medical margins of our world.  

It was with great curiosity, then, that I read a recent news blurb by Disability Rights International on the changing plight of people with disabilities residing in a Guatemala City psychiatric hospital.  I conducted ethnographic fieldwork in Guatemala during the summers of 2009 and 2010, and was frankly shocked to see any coverage of disability issues in the country.  To say that Guatemalan disability services are inadequate does not begin to describe the situation.  Although a few grassroots efforts, such as the incredible Guatemalan Foundation for Children with Deafblindness – Alex, have been extremely successful in advocating for certain diagnostic populations, the broader disability climate is bleak.  There are essentially no public special education programs in the country of over 15 million, leaving most children with disabilities in their families’ full-time care.  Shunning and stigma are the norm, and I heard story after story of children being locked in their families’ homes or of formerly close families ripped apart, grandparents refusing to see their own grandchildren simply because they were born with disabilities.  The fears of disability as or caused by contagion or resulting from medical disaster loomed large, complicated by woeful inadequacies in maternal and child health, widespread malnutrition, and restricted access to care.  Although the underlying tone of marginalization and neglect was sadly familiar to my personal and professional experiences in the U.S., the scope of the problem fell into another category altogether. Continue reading

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

Continue reading

Ally or Enemy?

Texans find themselves in a distinctly modern dilemma in choosing their new leader: should they choose the man with disabilities or the single mother who pulled herself out of poverty?

People across the state of Texas and beyond were captivated last summer when Wendy Davis launched her now-famous filibuster in the state Senate opposing a bill that would dramatically impact women’s reproductive rights.  It was quite a scene in Austin.  I recall watching it unfold online, thanks to the live streaming from the Texas Tribune, as my toddler snoozed in his crib.  My husband sent periodic updates from the Capitol, where he was camped out in Senator Kirk Watson’s office frantically looking for legal arguments to push the filibuster through until midnight.  Subsequent weeks saw repeated protests, marches, and demonstrations.  We wore orange to show our solidarity with Wendy (a truly unfortunate color for many of us, but the anti-choice side had already claimed blue).  It was an unassuming and diverse crowd.  Couples my parents’ age set up camp on the Capitol lawn with folding chairs and portable fans.  I met mom friends and we waves signs of support as our babies banged on toy drums, noshed on fresh fruit, and toddled on the grass.

Galvanized by a shockingly retrograde state legislature that thought nothing of chipping away at women’s rights, something surprising happened: suddenly, Texas had its first viable state-level Democratic political star in decades.  Wendy announced a run for governor in October.  Her opponent, current state Attorney General Greg Abbott,  was widely assumed until Davis’ announcement to be a shoe-in.  Perhaps he still is, but I am hopeful.  It can be difficult to judge broader state sentiment from the progressive bubble of Austin, yet the dominant hope in my camp is that women, people of color, and other voters who have traditionally been left out of the state political process will step up.  It would truly be a sea change, not only for our state but for the country.  After the last few decades, one struggles to imagine a national scene in which Texas was a blue, rather than red, powerhouse.

The two candidates have compelling personal stories of overcoming barriers.  Wendy’s is well-known and was featured recently as the cover story of the New York Times Magazine. Abbott, too, is running both on his Conservative political charms and also in large part on his experience as a person with disabilities.  Abbott was paralyzed three decades ago when a tree fell on him during a jog.  He uses a wheelchair and has steel rods implanted in his spine.  He now likes to invoke his actual, rather than metaphorical, “steel spine” as the embodiment of his strength and determination.  His disability is central to his political persona, both through the metaphor of steel and strength and also by way of the imagery of the wheelchair.  Texans find themselves in a distinctly modern dilemma in choosing their new leader: should they choose the man with disabilities or the single mother who pulled herself out of poverty? Continue reading