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

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Preliminary Thoughts on Race, Disability, and Health

Despite increasingly widespread attention to disability rights, disability outcomes in the United States remain shockingly divided by race. Few people realize that having a disability today is literally deadlier for Americans who are not white.

The numbers are haunting. While life expectancy for white Americans with Down syndrome is 60 years, African Americans live only half as long. Indeed, Blacks with Down syndrome are significantly more likely to die before their first birthday and face higher mortality rates until age 20. Since race has no biological impact on Down syndrome, social causes are the only possible explanation.

Down syndrome is not an anomaly. Looking at Spina Bifida, 96% of white babies survive their first year, but the number drops to 88% for Blacks and 93% for Hispanics. Autism, ADHD, speech and language disorders, and mental illness show similar racial disparities in diagnosis, care, and outcomes. Yet this receives scant attention by the media, researchers, and policy makers. Why?

Consider, too, the links between disability, race, and risk of violence. While it is known that people with disabilities are more likely to be victims of violence, how does this break down by race? What about violence committed by law enforcement? Time and again, we have seen highly publicized cases of police violence against people of color with additional conditions. Eric Garner’s asthma, Freddie Gray’s lead poisoning, Sandra Bland’s alleged depression, Matthew Ajibade’s bipolar disorder, and more. The list is growing, but the discussion about race and disability has barely begun.

As an anthropologist with expertise on disability in the U.S., I have encountered these disparities firsthand in my qualitative research and also in my ongoing review of the literature. Despite the successes of disability rights, millions of Americans with disabilities are cut off because of the color of their skin. People are hurting. People are dying. And, for the most part, this story remains untold.

[This piece is taken from a magazine pitch I recently submitted. Any suggestions regarding where to publish this story would be greatly appreciated! Note that this is not an academic piece. I want to reach people and build awareness, so the last place I would want to publish this particular paper would be in a paywalled journal!]

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.

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.

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)

Siblings and Disability – Part I

Disrupting Assumptions and Digging Deeper
Growing up with a sister who had CHARGE syndrome and was deafblind, there were many times when I felt alone in my experience. While I did not know other siblings in similar situations, there was never a shortage of adults who thought they understood how my sister had impacted me. For instance, I was “supposed” to feel jealous of the attention she received or anxious that I, too, might somehow contract her disabilities. Those are the two that stand out in my mind, but I recall a slew of well-meaning “experts” – whether in person or in the literature on families and disability – whose models of “typical” experiences for typical siblings never matched my reality.

I am now a disability researcher and, although my work does not focus on siblings, the topic remains important to me and is one of my many side projects. Below, I want to dispel a few myths about sibling experiences. This is the first in a two-part series, so please spread the word and stay tuned. I welcome comments from other siblings and am happy to share more of my work and thoughts on the subject, upon request.

Why Siblings?
Siblings are a neglected topic in the disability research, despite the fact that the sibling relationship can easily be the longest one many of us have. Why have we been so largely neglected in the literature on families and disability? While it is widely recognized that parents of kids with disabilities need to connect with other moms and dads in similar situations, this is all too often overlooked for siblings. As someone who never connected with other siblings until adulthood, I’m going to say categorically that this is not acceptable. Everyone deserves to know that they are not alone.

Why Now?
The contemporary social and historical context of disability has created a new era of long-term sibling experiences. As Americans with disabilities live longer, there are new roles for brothers and sisters. We are in the age of de-institutionalization (except in Texas, ahem!) and community living, which means that many adults with disabilities now have different living arrangements than in the past. Finally – and I cannot stress this enough – social media has engendered levels of organization and community formation among siblings that were unimaginable until quite recently. Siblings can connect with one another, network, share stories, brainstorm, and disseminate the critical knowledge gained from their experiences.

Existing Literature: Issues and Inconsistencies
When studying this body of literature, the first thing we see is a history of scant attention to typical siblings. What’s that all about?! (I have some thoughts.)

The next and perhaps most salient trend that emerges is the widespread assumption that having a sibling with disabilities is a negative experience. But based on what evidence? As someone trained in research methods, I have serious questions about many of the existing studies. All too often, I see siblings of people with disabilities pitted against a hypothetical, ideal sibling relationship – one I have rarely witnessed in real life. For instance, researchers lament the lack of emotional closeness between typical siblings and their brothers or sisters with disabilities. But how do they define closeness? What do we mean hereby intimacy and condoned or socially validated relationships? And are we so certain that typically developing siblings share such innate intimacy? These questions demand further inquiry.

I am also concerned by the fact that positive sibling outcomes are not prioritized in much of the research. Again, this relates to the underlying assumption that disability is an innately negative experience likely linked to (or correlated with) undesirable outcomes. Any good researcher knows that, if you go looking for a particular outcome you can likely find it. In regard to much of the work on siblings, I suspect this is precisely what has happened.

The next post in this series will outline some perhaps surprising findings about sibling experiences, as well as critical areas for future research. Stay tuned!

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: January 17-23

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

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)

Disability Visibility Project & Storycorps in Austin!

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!