Status Check

I’ve been quiet the last few months. Let me explain.

First, I’ve been writing/thinking/crafting my dissertation. It examines family experiences with undiagnosed children, particularly those with genetic syndromes. I’ve experimented with genre, shape, and voice – perhaps a bit too much – and opted to follow the suggestion of my advisor: approach it as a writing experiment on disability (anthropology). So that’s exactly what I’m doing.

Second, I started teaching. And I’m loving it. It’s a bitter pill, since the odds are stacked against finding a TT teaching gig once I graduate, yet I feel immensely inspired by my students and simply by being back in the classroom. I’m also starting to doubt my previous claims that teaching wasn’t the best way to change understandings of disability. These kids are open. (And I know they’re not kids.) They have an openness to difference that my peers and I never did, and that was only a half-generation ago. I’m hopeful.

Third, as I’ve said, disability is hard for me. The proper Disability Studies scholar wants to cheerlead my way through rights-based discussions and perhaps veer into Marxist territory (if it’s a Friday), but underneath it all disability is still too close. It rattles me. My experience as a sibling was perhaps extreme – my sister’s low-incidence impairments, undiagnosed syndrome, no family and virtually no peer support (on this theme, at least), litigation with schools, etc. Perhaps I shouldn’t let it color my opinion or, as one commenter implied after a talk on sibling experiences, maybe I shouldn’t be such a downer. (I mean, really?)

But it’s important for me to keep it real and that means that I can’t always do this work. I just can’t. And, as someone who grew up in this world, I acquired intimate knowledge of my limits. And I listen to them.

I have to say, though, I’m feeling pretty jazzed. Disability themes are all over the news again. Zika! The CDC telling women not to drink without birth control! New studies claiming autism connects to women’s pre-pregnancy health! You know I love the convergence of disability, folk etiologies, and mother-blaming. And let’s not forget the water crisis in Flint, the continued incidents of police violence against people with disabilities, Lego’s new wheelchair figure, and this fantastic piece in the New Yorker, which echoed so many of my own questions regarding medical versus popular diagnostics. I’m not only excited about the fact of disability-as-news, but also the nuance represented. These stories represent a long overdue coming together of disability, race, ethnicity, class, regionality, nationality, gender, sexuality. They speak to patterns of consumption and public awareness. They engage public health, expressive culture, literature, and the violence of the everyday. This, I would argue, is where we need to be going. Bodies, scenes, histories, things. Are these not all part of the puzzle?

I’ll be posting more. I also have some online publications coming out – at least two, perhaps a third if I can work up the courage to finish it. (And, yes, courage is the word.) And if I can really get myself together, maybe I’ll even get a proper article out.

Stay tuned.

 

 

 

 

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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.

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.

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

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