Your weekly dose of disability news coverage, commentary and debates. Enjoy!
Disability and Health Disparities
“Hypertension More Prevalent in Individuals with IDD” (The Arc)
“Race and Health Disparities in Adults With Intellectual and Developmental Disabilities Living in the United States,” Haleigh M. Scott and Susan M. Havercamp (Intellectual and Developmental Disabilities)
Vaccines and Infectious Disease
“When Measles Spreads From Disneyland, It’s a Small World After All,” by Rachel Rabkin Peachman (NYT Motherlode) Continue reading
In case you missed it…announcing the Disability Fieldnotes weekly feature! Sign up here to receive an email each Friday with a short list of the disability-related news stories that I found most captivating, curious, or controversial from that week. As with content I post on Twitter, retweets ≠ endorsements. I do not necessarily agree with the articles included in Disability Fieldnotes. I do, however, think that they are important.
Whether your connection to disability is academic, personal, or professional, I hope that Disability Fieldnotes will be a fantastic resource. Weekly news highlights will include such diverse themes as genetics, bioethics, caregiving, special events, policy, and cutting-edge research. Read the stories right away or file them for later perusal. Share them with colleagues and friends, cite them in your research, mention them in meetings and presentations. Just use them. Spread the word, raise awareness, and help promote increased knowledge and understanding of disability issues in the U.S. and elsewhere.
Questions or suggestions? Drop me a line at emlewis [at] gmail [dot] com. Looking for a more extensive list of disability news? Then check out my Twitter feed (@lizlewisanthro), which I use as a continuously updating archive of disability stories in the media.
Here is the first weekly installment of this curated news series. Enjoy and please share widely!
”Measles Makes an Unwelcome Visit to Disneyland” (NPR)
“Anti-Vaxxers are Idolizing the Amish, Inexplicably” (Atlantic Monthly)
“U.S. Court Upholds NY State Vaccination Requirement for Students” (Reuters)
Caregiving and Parenting
“‘Home is a Medicine Unto Itself'” (Atlantic Monthly)
“Parenting on the Dark Side” (NYT)
“My Son is Black and has Autism, and I’m Terrified” (Today.com)
“Parents of Autistic Children Say Shooting Hits Home” (KVUE.com)
“Family Remembers Man Killed by Homeowner as ‘Gentle Giant'” (KXAN.com)
“CDC Stepping Up Autism Monitoring Efforts” (Disability Scoop)
“Recalling Blind Tom: An Autistic Pianist Born to Slavery” (NYT)
“Mat Fraser: ‘Someone Had the Balls to Make a Drama Starring Freaks'” (The Guardian)
“The New Abnormal: The Carnival Logic of American Horror Story” (New Yorker – from December, but a good read)
I’m thrilled to announce a new feature for Disability Fieldnotes highlighting each week’s most interesting, important, or perhaps controversial disability-related news stories. Subscribers will receive a single email (no more, no less!) each week containing links to these curated stories, picked from my otherwise endless search for disability in the media. The Disability Fieldnotes digest will be an excellent way to catch up on a small number of stories you might have missed, to stay abreast of pressing issues and upcoming events, and (for the researchers out there) to maintain an ongoing record of relevant news throughout the year.
Would you believe that the slots for StoryCorps interviews were filled in three minutes during last month’s registration? Wow!
Here’s so good news: due to unambiguous demand, StoryCorps has opened up additional interview times. People can sign up here Wednesday, January 7th at 10:00 a.m. Be warned, however, that these will likely go just as quickly as last time.
If you live in the Austin area and have a disability story to tell, please consider signing up!
Storycorps is coming to Austin in January, but this year there’s a twist. Storycorps is a nonprofit organization best known for its relationship with NPR, which often features segments of interviews. This year, Storycorps formed a community partnership with the Disability Visibility Project, a fantastic initiative that encourages people with disabilities and others in the community to share their stories via Storycorps in order to create a more robust and accessible archive of disability history.
It’s easy to participate and is an incredibly way to get your story out there. All interviews are housed at the Library of Congress, literally creating a time capsule for future generations. Certain interviews are also featured on NPR and its website, or on the Storycorps website.
In order to participate, you just need to register for a time slot. Registration opens up at 10:00 a.m. on Monday, December 22. You can sign up here or call this number: 1-800-850-4406.
I have tried to promote this opportunity via social media and I really hope that people in the Austin area will come out to share their stories about personal or family experiences with disability. I’ll definitely be signing up. Please consider doing the same!
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.
The New York Times just released its picks for the 10 best books of the year, and it’s hard to miss a few surprising themes. Disability, risk, health, and even anthropology stand out in at least four of the 10 selections.
I was thrilled to see Akhil Sharma’s Family Life on the list, a beautifully concise rendering of the protagonist’s experiences with a brother who sustained life-altering disabilities following an early-adolescence accident in a swimming pool. The story is eerily similar to Sharma’s own, and he has said elsewhere that it is approximately 70% true. How stunning to have another sibling recognized for sharing his story, even if it is one I found difficult to read at times. Sharma captured a sibling experience that resonated with my own in his refusal to turn saccharin. I sensed an emotional boundary in his writing that indicated not a lack of connection with his words, but rather an intense understanding of the emotional boundaries he set for himself long ago, of the desire not to make things worse and to decipher a situation – looking back, years later – for which he had not other models. This is an incredibly important intervention in that it breaks from the inspirational and affectively charged narratives that mark so many family disability stories, whether fictional or otherwise. This book is the opposite of anything on the Huffington Post. It is raw, yet restrained; the emotions are controlled and deliberate, but their depth renders them dangerous. You can find Louise Kinross’ beautiful interview with Sharma for BLOOM here. I also suggest reading this fascinating piece in which Sharma describes how he wrote Family Life.
Another striking selection was Eula Biss’ On Immunity: An Inocculation. Written from her perspective as a mother – and one of the peculiarly citified, educated, Whole Foods-shopping, chemical-fearing modern ilk that I know so well – Biss probes the logics and anxieties of vaccinations in the contemporary U.S. I absolutely recommend reading this in tandem with Seth Mnookin’s The Panic Virus. While I’ll admit I found Biss’ voice grating at times (if only because it captured all too well my own nagging fears as a mother within the same urban tribe), her treatment of the moral imperative of herd immunity is important in its nuanced, yet unwavering, commitment to acting for the greater community good.
The two additional picks that caught my eye were Anthony Doerr’s All the Light We Cannot See, which features a prominent character who is blind, and Lily King’s Euphoria, which is a fictionalized account of Margaret Mead’s romantic drama between her second and third husbands. I haven’t read either of these yet, but I have both on hold at my library and will let you know what I think.
What does it mean to be undiagnosed? I ask this both in regard to the impact of diagnostic ambiguity and also the broader social and biomedical significance of a diagnostic void. More specifically, I’m interested in what it means to give meaning to the lack of a diagnosis. To not having a name, not having an access card to services or therapies, to the affective and logistical resources that ground people with disabilities and their families in broader worlds, worlds that reach beyond the parameters of their autobiographies, stretching outside the walls of their homes and the borders of memories.
My sister, Katie, was born in 1984. She was slightly premature – but not alarmingly so – and had a seemingly mismatched collection of impairments and health conditions. After her birth, doctors told my parents that she would not survive. I vividly recall going to preschool as all of this unfolded and being congratulated for being a big sister. “What’s your baby sister’s name?” asked my teachers and my classmates’ parents. “She doesn’t have one yet,” I replied. “The doctors aren’t sure if she will live, so my parents haven’t named her yet.” I was four years old and did not realize the singular strangeness of this statement. Continue reading
As a disability sibling and scholar, my professional and personal lives blur. They unfold within a tension and, when I’m in the thick of interviews with family members or am sifting through my existing data, I necessarily engage with the words and experiences more fully – or simply differently – than if I had the luxury of empathetic detachment. The stories cut just too close to the quick. The modern term of art would be trigger warning: my data, my project, is one continuous trigger warning. But that’s so dramatic. Lives happen, experiences unfold, and we deal with the affective and practical worlds in which we land. So I sweat out the memories in my long runs or watching an episode of “Parks and Recreation” on Netflix at the end of a day of recording and coding data. I knead the old negativity away as I prepare pizza dough from scratch, marveling as it doubles in size, or baking chocolate chip cookies. I do what I can to detoxify the old stresses, doubts, and what-if’s of my own family’s story as I listen to others share theirs. It’s a balancing act, but it’s the one I chose.
My research examines family experiences with rare and undiagnosed disabilities. This is an incredibly important and largely unrecognized population numbering well into the millions, and my work is part of a slowly stirring effort to raise awareness about this world. On both a personal and intellectual level, I am fascinated by the possibilities for diagnostic identity – for reframing a lack of diagnosis not as an individual anomaly (often with heavy moral undertones), but rather as an expansive reality that is neither a negation of modern biomedicine’s promises nor an inherently isolating and ambiguous embodied reality. Continue reading