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

Truthtelling

At some point this year, my dissertation shifted from a (largely unwritten) traditional ethnography to an intentional experiment on writing/thinking/doing disability as a scholar. This was a change borne out of necessity, namely an ongoing writers block stemming from my constant worry about the question of truth. Truthtelling, to be exact. How to form my data into a cohesive project that is 1) mildly elucidating; 2) useful for scholars, families, and professionals in the disability field; and 3) does both 1 and 2 while also doing no harm to my interviewees. This was the hard part.

As both a disability sibling and an anthropologist, I know firsthand that these stories can be dangerous. A family’s tales of stones left unturned, unexamined research studies, the bad luck of geography and time, neglecting to get a second opinion or perhaps listen to the first. Of affective, medical, and therapeutic worlds that have not caught up to the daily needs and lives of these children.

Context is huge, and hugely personal, when dealing with a child with undiagnosed disabilities. I recall a woman I wrote about in my Master’s thesis, whose son’s abilities were seriously compromised by a lack of services during early childhood. I wrote about her experience in my thesis – uneasily, knowing that perhaps I shouldn’t – telling myself that the story was meaningful. Others could learn from this illustration that disability is dynamic and social shaping could be paramount. Did the mother read it? I have no clue. But I mailed a copy to the disability organization where she worked at the time and I’ve thought about it for a decade. In my current work, this was not an experience I wanted to repeat.

I know, too, that in my own family’s disability history there are stories I simply will not tell. Things that have long gone unspoken, that not even my husband knows. Details and ruminations that would traumatize through seemingly sterile memories or the insertion of present knowledge onto past predicaments. And so I remain silent, focusing instead on the generative power of this personal knowledge. As a researcher, I feel obligated to approach the stories of others as I would my own. The question is how to reconcile this new ethics of disability anthropology with disciplinary expectations.

The notion of truth is, of course, fraught. This was captured in the movie classic Rashomon (which every anthropologist should watch), but also more recently in Sarah Treem’s outstanding Showtime series The Affair. I found myself sucked into The Affair’s treatment of truth, memory, and perspective. I became convinced it was directly relevant to my project. And only recently did this start to make sense. Matters of perspective, detail, and the everyday are more subjective than we care to admit, whether as anthropologists or otherwise. For storytellers of the scholarly variety, this raises significant challenges – all the more pressing in research like mine, in which these narratives are embodied physically, emotionally, and intellectually by the children of the parents I interviewed.

Recently, I wrote my first short story in years. It was more of an experiment than anything else, but the words flowed in a way they hadn’t in months. The protagonist was a teenage girl with an undiagnosed sibling, and the story was based loosely on narratives from multiple interviews I conducted for my dissertation, as well as on my memories of growing up with my sister. It’s fair to say it was strongly influenced by my own experiences, yet not at all a piece of nonfiction.

I wrote 20 pages in two days. Twenty decent pages – workable, usable. Twenty pages not of a particular truth, but of a story I felt needed to be told and read. I felt no need to pause to flip through fieldnotes – no need to verify a quote or double check the age of the speaker. I was free to invent the incidentals as I went along. No IRB looking over my shoulder, no anxiety about my research subjects challenging or being harmed by my words. As a scholar, this experiment with fiction was one of the most liberating and productive experiences I have had.

Fiction in anthropology is a taboo. Ditto for our feelings about journalism. Worries of blurring genre lines, about compromising the strength of a discipline that is increasingly challenge by the public as a fanciful holdover from past eras. Sure, we hang our hats on counting Zora Neale Hurston among our disciplinary forebears, but for the most part anthropology thrives on embracing subjectivity while asserting scholarly rigor. It is an argument I largely swallow, but that many in our peer-reviewed society do not. And I cannot help but ask, why bother? If my aim as a scholar and activist is to reach people with my data – which consists, let’s face it, of collections of stories – what is the best medium? Voice? Genre? I am increasingly unconvinced that the answer is a traditional ethnography, particularly if it is published by an academic press and thus largely inaccessible to the public. What’s more, I’m increasingly convinced that the really real that ethnography seeks to capture exists in the composite. I am currently exploring this through my writing, which has become an exercise in distillation and compilation, rather than a comparative analysis of individual cases.

Along these lines, I recently attended a fantastic talk by Viet Thanh Nguyen and Jim Shepard at the Texas Book Festival, which touched on virtually everything I’ve been thinking about regarding fiction versus scholarship. These authors made me think not only of the emancipatory possibilities of fiction version ethnography, but also of its activist potential to fill in critical gaps in our own cultural narratives. How can we use fiction to create new archetypes? For my work, what about the potential to use fiction to carve out a space for undiagnosis as a state and not a stage? For the ambivalent sibling who is neither a martyr nor a failure? To eschew happy endings in favor of something more real. More really real, in fact. I think, too, of Rachel Simon, one of the most well-known disability writers of our time, who has tackled disability themes through both memoir and the novel. And, of course, I think of Rashomon and The Affair, and their reminders to remain wary of truth claims and steadfast narratives, whether from academics or others.

The takeaway? I can say definitively is that I am both intellectually and ethically uneasy about writing a typical ethnography. Rather than be stymied by tedious debates about replicability of findings or the risks of reflexivity, I would prefer to make things up as I go along. I mean this literally, using fiction, reflexive blog posts, jottings, and other experimental or informal writings as an accommodation to help move through the ambiguities and danger zones in my work. Stay tuned.

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.

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)

A Curious Synergy: This Year’s NYT Best Books

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 BissOn 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.

Undiagnosed Disabilities: Some Preliminary Thoughts

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

Diagnosis On My Mind

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

From Ebola to Pertussis: A Look at Medical Conspiracy Theories

Guinea, Sierra Leone, Liberia, Nigeria, and now Senegal.  The outbreak of Ebola in West Africa continues to spread. Marked by high mortality rates and images of gruesome death by hemorrhage, Ebola is perhaps the quintessential modern plague.  The current epidemic has been a fixture of the international news for months now, particularly in regard to public health efforts and the significant risks to medical staff (including two Americans) working with inadequate resources to help afflicted communities.

But why are we so transfixed, particularly since the numbers pale in comparison to global rates for far less “exotic” illnesses? And how do international understandings and fears surrounding Ebola connect with underlying (mis)conceptions regarding Africa? Consider, for instance, that up to an estimated half-million people die each year from influenza around the world.  Why does that simple fact lack the visceral panic associated with discussions of Ebola?  Ebola is terrifying, to be sure, but it also raises important questions about understandings of risk, contagion, regionalism, and the values attached to some lives, to some forms of death.

Continue reading