The Diner

“Aunt K. used to be happy when she was young. Now, she’s angry.”

photo

Aunt K.’s doll avatar, as imagined by a three-year-old..

My head snaps to the side, surprised by my three-year-old son’s statement during his after-school snack. Had he gotten this from me? Undoubtedly. Aunt K., my younger sister and his only aunt, has Charge syndrome and is largely isolated from the world around her. She has no community activities, and interacts almost solely with my parents, the staff at her house, and her roommate. She and I connect less and less with each visit. The erosion of personhood is a curious thing to witness.

She used to be happy when she was young. Now, she’s angry. It’s an oversimplification that glosses over many years in the middle, but it’s not incorrect. I would not say she’s angry, though. I would say done. Now, she’s done.  Continue reading

Disability: A Sister’s Ambivalence

I have a confession: there are many days when I wish I was anything but a disability researcher. I think wistfully to my high school aspirations of becoming a pediatrician or psychologist, or my college plans to go into journalism, and I wonder when I veered off course. I ask myself constantly how and why I got to where I am. Recently, it’s become a daily ritual.

Disability is hard for me. My sister has disabilities – and not the recognized, easy to explain kind, if such a thing even exists. She has multiple sensory impairments, distinctive facial features, long limbs, and a strangely slow gait for no apparent reason; she is taller and stronger than I am. Katie knows some signs – fewer than 100, I’d say – and she lost what hearing she was born with during elementary school. She cannot communicate verbally except through a series of indecipherable grunts, cries, or yells. My young son has begun imitating her as a joke on occasion, and I find myself clueless as to how to respond.

Our childhood was messy, as is the case for families with an undiagnosed son or daughter. We never knew anything, certainly not a diagnosis. How did the seemingly mismatched collection of impairments and conditions – cleft lip, heart murmur, and hearing and visual impairments, among others – fit together? Why did she never learn to talk? What caused the ear infections that resulted in total hearing loss? What could we do with intense self-abuse once it began? Why was our school district refusing to help us? So many questions, hopes, anxieties, fears, and – as a sibling – the requirement that I shift as seamlessly as possible between my home disability world and the outside realm.

I lost interest in medicine, teaching, and psychology as a teenager because no one could help my sister. I never even considered speech therapy for that same reason. As I saw it at the time, the only thing this endless parade of specialists had ever done was get my hopes up and then disappear. I always wanted to help families of people with disabilities, yet I had been so fully and deeply disappointed by them in my own life that I flinched at the thought. I never considered that perhaps I could bring something new, help people in new ways within a more traditional role. I simply could not bear the thought of letting down other children and families the way that, for my family, was central to our ongoing emotional upheaval and Katie’s ultimate deterioration. None of those people were able to really reach my sister, yet all of them talked a good game while also getting paid. And there was no recourse, no accountability. Just wasted time and fruitless ventures, one after another. That is what I saw.

It’s perhaps no surprise, then, that my relationship with disability is marked by ambivalence. Indeed, the topic itself is far too intimate and fraught for me. I want to champion disability rights, to raise awareness about the experiences of individuals and their families, and yet, as a sibling, I know I could do better. As a parent, I am terrified – terrified, truly – by the thought of my child having a disability. I watch my child like a hawk, overanalyzing every idiosyncrasy as a sign of something more. I am ashamed to admit this. It goes against everything I want to say that I believe about equality and acceptance, about actively incorporating new types of diversity into the fold of contemporary humanity. About carving a better world. And yet, it sends me into a panic. Disability is both my life’s work, if I can make such a bold claim, and my Achilles heel. It fuels my creativity and animates my politics, yet I also live in fear – too much, too illogical – from what I witnessed in my own home growing up.

The scholar in me can say with confidence that my sister was the product of an era that no longer exists. Disability rights were fairly new. CHARGE syndrome, which we now know Katie has, had only just been identified and she would not be diagnosed for years. My family was told not to teach her sign language for far too many years – an egregious legacy of the oralism movement that had a tragic impact on my sister. We were in ongoing litigation with our school district and state, both of which I grew to hate (a word I do not throw around, as I learned what it really meant quite early). The powers-that-be were despicable, yet it wasn’t entirely their fault. There was no one else we knew of like Katie in the area. Special ed meant Down syndrome, it meant the children then lumped under the R-word. It was a blurry umbrella that completely obscured anything extraneous, a bureaucratic designation above all else.

In turn, my ambivalence is not directed at my sister or others with her (or, really, any particular) diagnosis, but at the world in which these labels unfold. Katie’s world failed her. It did so by way of a dull, persistent combination of stigma, ignorance, ableism, protocol, and laziness. It failed her in its refusal to acknowledge the social and cultural underpinnings of disability experience, which is a fancy way of saying that context is critical in shaping what disability means, does, and how it looks. This is all the more poignant from where I write today, in Texas, a state widely regarded as failing its citizens with disabilities. For disability – and for families – place and time can be paramount

Disability structured the rhythms of my childhood and, today, my memories. We took our final family summer vacation the summer after I finished seventh grade. After that, Katie’s physical outbursts became to serious. The litigation with the school and state became too onerous. Money was drying up, my sister was falling apart, and I was conveniently able to slide out of the full-time family scene through things like summer camps and, later, part-time jobs. Katie’s self-abuse grew extreme. Banging her head on walls or the floor, throwing her body around while in a chair. Such a violence of the self. I stopped having friends over. I was not going to let them see my sister fall apart – into herself, away from any trace of hope – before us, because there’s no other way to explain what was happening. And, as much as I would love to coat this tale in more positive language, there is absolutely no question of what happened. My sister began life with capabilities that were stamped out over the years. She lost herself, was lost inside of herself in a world that cast her aside completely. She spent her childhood in solitary confinement. And she never got out.

This is the disability world that lives in the back of my mind. This is why I panic at the thought of my child being shy or crying at the sound of a paper towel dispenser – the innocuous quirks of growing that shouldn’t merit a second thought. This is why I find myself wondering all of a sudden if I have the emotional power to even consider a second child. Because I have been consumed by a fear, by an all-encompassing panic that sends me into a tailspin of memories and also anxieties about what lies ahead for Katie. Because I see her retreating again, pulling back into self-abuse that is interrupted only by hours staring mindlessly, stuck in a house with no community involvement, no friends, no connections – none of the things that keep me even slightly balanced. And, if I’m being honest, it terrifies me.

But the fact remains that, at some point, I decided to make meaning out of my experience through talking to other families, writing their stories, and sharing what I know. Perhaps it is the only way I can make sense of why things did not turn out differently for my sister, for us. “My work is about making sense of people who fall out of diagnostic common-sense,” I used to say. But that’s too overblown. I just want to help interpret how families like mine diverge from collective notions of the good life at the level of the body. Because, ever since Katie was born, I grappled with fundamental questions of how we value bodies, perception, function, and the senses. I remember trying to quantify sensory meaning – what would you give up if you had to? I dreamed that Katie would simply begin speaking one day. I made her play “speech therapy” with me, forcing her to sit at my child’s table in the kitchen, so sure I would be the one to finally prod some words out of her. I recall vividly trying to imagine what was going through Katie’s mind as she pounded her head against the dining room wall. Or afterward. Was it rage? Frustration? I now explain it to my young son: “Aunt Katie cannot talk, she can only talk to us through her body. And this is how she shows us she is upset.” Is that right? Is my explanation some sort of ableist violation in and of itself, or should I perhaps look more closely at how I attempt to explain my sister in the simplest terms?

And my son loves his Aunt Katie. He talks about her regularly, even though we live two states away, but he also jokes innocently – yet almost automatically – about her sounds and facial expressions, the way she narrows her eyes and flattens her mouth into a crooked not-quite-scowl. And I let him, reminding him only that Katie is different and different is okay. I have to stop myself from forbidding such jokes, since I know he is only trying to make sense of his only aunt and children learn through mimicking, through imitation. The last thing I want is to teach him not to speak of difference and diversity, whether disability or otherwise. One lesson we should all know by now is that codes of silence simply do not work. They destroy any possibilities for integration and understanding. And so I keep the dialog open.

I have been unable to write recently, I think because I have had so much trouble being honest with myself about disability in my life. It is too intimate, too close, and I struggle to break out of the scripts I’ve been working on for three decades now. Friends nod when I mention writers block, saying this is simply what happens with academics – the projects drag, they mess with our perspectives of the world – but for me it is much more than that. My research grows forth from my core, from the most hidden and intimate spaces of my being. It is not a fetishized interest or curiosity, but is arguably the most defining aspect of who I am. So, yes, there are days when I ruefully tell myself I should’ve just gone into marketing like everyone else. But that just isn’t me. It’s not my story. And it never was.

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

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)

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)

Silence and Noise

Confession time: I’ve been unable to write for the last two months. It’s been a time of side projects and talks, plus lots on the personal end, but in terms of disability writing I’ve done virtually nothing. What I did complete was somehow deleted by Scrivener, which, in my writer’s block haze, I took as an obvious sign that I shouldn’t be writing. So I took a break.

After spending over a year doing continuous research, I found myself frozen in a state of paranoid introspection. Why was I doing this at all? Why dredge up my own memories of rare and undiagnosed disability in the family? What if people found out that my sister and I have grown sadly distant – that I live hundreds of miles away and, within the parameters of her abilities, I do the best that I can but have a nagging awareness that our modern relationship fails her? Would I have to face my own terror about what will happen in the future, when my parents can no longer help with my sister, when she finds herself in a city with no kin and few personal connections (somehow, after 30 years), and here I am in one of the absolute worst states in the nation for adults with disabilities? Continue reading

Disability Fieldnotes Weekly: Jan. 10-16

Second installment of Disability Fieldnotes, my weekly curated digest of disability in the news. Subscribe here!

Family

Harsh Critics in Public Spaces, Judging Only What They See” David M. Perry (NYT)

Gender, Parenting, and Public Shame” David M. Perry (companion to NYT piece, published on Perry’s blog)

Remembering a ‘Giant’: Everything We Did, We Did Together” (NPR) 

Diagnostic Understandings

When ADHD Isn’t What it Seems” Olga Khazan (Atlantic Monthly)

Society and Culture

Four Disability Euphemisms that Need to Bite the Dust” Emily Ladau (Center for Disability Rights, Inc.)

RJ Mitte: Nothing I Do Will Ever Compare with Breaking Bad” by Homa Khaleeli (The Guardian)

“We Wouldn’t Accept Actors Blacking Up, So Why Applaud ‘Cripping Up’?” Frances Ryan (The Guardian)

HBO to Air Autism Documentary” Michelle DIament (Disability Scoop)

Politics

Rand Paul: Disability Insurance Wasted on People with Anxiety and Back Pain” (Huffington Post)

’Death With Dignity’ Laws are Proposed, Bringing National Debate to D.C. and MD” Mike DeBonis (Washington Post)

Media Advisory: Disability Advocates Prepared to Oppose Flurry of State Assisted Suicide Bills Being Introduced in 2015” (PR Web)

 

Disability Fieldnotes: Jan. 3-9

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!

Vaccines
​”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)

Autism
“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)

Pop Culture
“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)

Announcing Disability Fieldnotes Digest!

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.

Subscribe here!

Update: StoryCorps/Disability Visibility Project!

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!