Disability Fieldnotes Week in Review: June 26-July 2

Here is a curated collection of last week’s disability news. Enjoy!

History:

“Laura’s World” (Louis Menand)
New Yorker feature story on Laura Bridgman, the first deafblind child to receive a proper education in the U.S. Bridgman’s deafblindness was the result of scarlet fever as a young child, and she went on to study at Perkins School for the Blind, where my younger sister went to school as a teenager. For a fictionalized account of Bridgman’s life, read Kimberly Elkins’ What Is Visible

Disability, Law, and Society:

“Why French Kids Don’t Have ADHD” (Marilyn Wedge)
Interesting piece on the the cultural facets of this common diagnosis. While I cannot comment on the science behind it, I do believe it’s important to question contemporary understandings of “disorder” and even “diagnosis.” I’m curious to read more from this author. Continue reading

Week In Review: June 13-18

Week in Review is back! Disability Fieldnotes, too. What can I say? I’ve been busy.

This was a particularly jam-packed week in disability news and events, thanks in part to last weekend’s incredible Society for Disability Studies conference in Atlanta, which I was incredibly fortunate to attend. I’m still reeling from the experience – in a good way, that is – and am working on a few blog posts, so keep an eye out. For now, however, the news.

Mental Illness
It’s Not About Mental Illness: The Big Lie That Always Follows Mass Shootings by White Males” (Arthur Chu)
As an anthropologist and disability scholar, I am fascinated by tendency to explain despicable acts of violence by white perpetrators in terms of mental illness. A great read.

Society for Disability Studies Conference
This conference blew me away. Did you miss it? Nah, you just think you did. You can read live tweets from the incredible Digital Access Facilitation Team (DAFT, of which I was a part) at #2015SDS.  DAFT mastermind Adam Newman is in the process of archiving the Twitter coverage on Storify, so stay tuned for that. An incredible digital access initiative.

Disability Rights
For Individuals With Disabilities, There’s No Place(Ment) Like Home” (Michaela Connery)
A piece on the crisis of disability housing in the U.S. Keep an eye out for more from this author.

Education
New Federal Report Explores Ways to Break the School to Prison Pipeline for Students with Disabilities” (National Council on Disability)
U.S. Schools Must Stop Excluding Children with Disabilities” (David M. Perry)

News
When it comes to the case of Gypsy Rose Blancharde, the supposedly-disabled-but-not young woman who recently murdered her mother, I am biased. First, I’m writing a piece on disability and mother-blaming, so I’m familiar with Munchausen by Proxy, a condition with which mothers literally create illness or disability in their children. It’s an accusation sometimes leveled at moms whose children’s disabilities and medical conditions cannot be explained, and it first made the ranks of the DSM in 2013. Part of my fascination with Munchausen is that it illustrates that – contrary to some well-known anthropological beliefs – we do not, in fact, have to look to other cultural frameworks to find exceptions to the supposedly innate nature of mother love.

In addition to my interest in Munchausen, I’m also from Springfield, MO, the Ozarks’ city closest to the Blanchardes. I’ve always regarded the area as a hotbed for truly bizarre, NCIS-style crimes, and this fights right in. I will be writing more on this next week. For now, here is some coverage from a few of my hometown news outlets:

Was Gypsy Blancharde a Victim of Munchausen by Proxy” (Stephen Herzog)
“Newspaper Report Shows Blanchardes Were Claiming Medical Issues in 2001” (Gene Hartley)
Around the Web: Notable Coverage of Blancharde Case” (Thomas Gounley)

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

Dispelling the Myth: Texas’ Defense of Institutionalization

Like many people in the disability community, I have been shocked by the recent one-sided media coverage of the upcoming closure of the State Supported Living Center (SSLC) here in Austin (including this, this, and this). I will have much more to say on this, but I wanted to address some key points first.

1) Make no mistake about it: the SSLC is an institution and institutions segregate people with disabilities by design. They are also part of a tangled history of marginalization, sterilization, eugenics, and what I would call a systematic erasure of a significant portion of the population and a denial of this kinship world.

2) Institutions are not an inevitable aspect of disability services. Indeed, as of 2011 there are 14 states that have no institutions for people with disabilities. This is not because these states have chosen to throw these individuals to the wolves; rather, they provide services to individuals in their communities.

3) In the landmark Olmstead v. L.C. ruling of 1999, the Supreme Court of the United States ruled in favor of community living. This decision asserted that Individuals with disabilities have the right to live in the least restrictive environment, dealing a decisive blow to the “unjustified isolation” of this population. Note that this happened 15 years ago. 15.

Continue reading

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.

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