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

Siblings and Disability – Part II

This is the second installment in a two-part series about siblings and disability. The first part can be found here.

What does Disability Mean for Typical Siblings?
First things first, I want to be very clear about one thing: existing research does not support the widespread assumption that having a brother or sister with disabilities leads to negative outcomes for the typical sibling or that it is an inherently negative experience. It simply does not support this claim. More to the point, the literature indicates that, as a group, siblings cannot be distinguished from their peers. (See this piece for more.) Moreover, one finds no causal link between disability and negative outcomes for siblings. This is critical.

Perhaps a more interesting question is this: why do some siblings have negative experiences a while others do not? What is the role of disability here? What might this teach us about facilitating positive sibling experiences with disability? How might this enrich understandings, both scholarly and applied, about families and disability?

Disability, Behaviors, and Sibling Experience
It is important to note that research indicates a possible link between negative sibling experiences and the presence of behavioral challenges in the brother or sister with disabilities. Sadly, based on my personal experience I can say – anecdotally – that this resonates. My sister’s disabilities became a much bigger challenge for me once she became self-abusive. It was difficult to take her to many public places, as she was prone to throwing herself onto the ground, banging her head, and getting into an emotional and bodily space that was difficult to break.

While I was never overly concerned by the responses of strangers, I simply did not feel comfortable showing letting most of my friends see this. It was too unsettling and, to be honest, violent. Did this place additional strains on me as a sibling, particularly as I moved through the social mazes of high school? Absolutely. By the end of high school, I essentially did not let anyone in the door if Katie was awake. This is tragic and should never have had to happen. Did it have a lasting impact on me? Nah. But if I could do it over again I would make sure that my childhood friends had maintained their relationships with my whole family as we got older. With supports, knowledge, and communication, I believe that our isolation could have been mitigated.

Moving Forward: Key Points Regarding Siblings and Disability
Ultimately, what do we know about the brothers and sisters of people with disabilities? Not enough. But there are some positive glimmers. In a nutshell, here’s what I would say:

First, disability must not be mistaken for the primary determinant of a sibling’s well-being. Families are complex, as are individuals of all ages. We have the right to this complexity in all of its messiness, quirks, strengths, weaknesses, successes, failures, difficult spells, mistakes, and chance. It is a fallacy to explain a particular trait or tendency in terms of having a sibling with disabilities. This has been used all too often as a scapegoat and, frankly, I’m tired of it.

Second, more studies need to focus on – or, at least, include – siblings. That’s it. We need to know more.

Third, research must account for the diversity of family types and individual experiences. We need to unpack big, scary categories like race, ethnicity, and class. These are all too often ignored or glossed over in disability research in general, which I see as a massive problem. Our work must reflect our world. As a researcher and a sister, I have to stress the diversity of both family setups and sibling relationships. These are not monolithic categories, which makes (or should make) it difficult to generalize. For instance, my experience was shaped significantly by the fact that my sister is my only sibling. Also, we were four years apart. Someone with a sibling 10 years younger would likely have a different dynamic.

Four, just like parents, siblings deserve access to a community of peers. We must not be isolated. Family disability organizations need to prioritize sibling programs – not just once a year at the retreat, but as a regular and ongoing feature.

Five, siblings need self-determinism and independence. We need to be able to speak for ourselves in the literature, rather than continue to be told how we should think/feel/act. We need to muddy the waters and break out of the biases that continue to skew assumptions of what it means to have a brother or sister with disabilities.

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

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

Caregifted: Some Thoughts on Respite Journeys for Caregivers

I was so inspired to read about Caregifted, an organization that provides all-expenses-paid respite vacations for parents who care for their children (including adults) with disabilities.  This incredible project was founded by former MacArthur Fellow Heather McHugh, who describes its development in this interview.  Filmmaker Adam Larsen is currently making a documentary, Undersung, about Caregifted participants and their stories.

The film trailer is all to familiar to many of us.  Watch it.  This project pushes back against the typical stale tragedy and triumph narratives surrounding family histories with disability.  The videos and images reveal instead the intermingling of politics and aesthetics in caregiving, and the at-times extreme intimacy of care for children with complex or multiple disabilities.  It strikes me that this would be less shocking if we as a society were more attuned to the undeniably physical nature of parenting and perhaps simply family in general.   I see this with my own young son, but also with my relationship with my sister.  She cannot communicate verbally and knows only a smattering of signed words, so we share our thoughts and worlds through touch, gesture, position, and eye contact.  A hand resting softly on a knee, perhaps, or using sighted guide to help her navigate a store.  Playfully raising and lowering our eyebrows or blowing kisses.  Her head bent onto my shoulder, leaning into me on the sofa as I put an arm across her shoulder.  There is nothing groundbreaking here except for the recognition of bodies as communicative forces.  Sensorially and otherwise, there is nothing singular about it.