Your People

By Nicole Schroeder 

“You should get a therapist to help you cope, there’s really no help for your people.” This crass statement, issued by my first pain management doctor, ended up changing my life. It wasn’t the apparent hopelessness of my situation that struck me, but the casual tone in which the doctor cast my experience as one of inevitable loss and suffering. I would never be cured, so why even bother treating the symptoms? In the medical gaze I was a hopeless case that would create negative statistics and evidence the failure of medicine to fix all aberrant bodies.  Entering the room with multiple conditions (including Ehlers Danlos Syndrome III, Arnold Chiari Malformation, Mast Cell Activation Disorder, and Postural Orthostatic Tachycardia Syndrome) I had little hope. I knew that it was a long shot to rely on the hospital system with its dismissal of alternative medicine. I was still disappointed, dismally so. I remember buttoning my coat as my mom ranted at the doctor for his insensitivity. I remember storming out of the room because I wouldn’t let myself cry in front of an uncaring doctor. Looking back at this incident that occurred five years ago, I wish I could tell myself that it would turn out ok and that this terrible incident would spark a fight inside me to sustain my career.

At the time I was sophomore at Colgate University. After a slew of doctors appointments over Christmas break I returned to school to begin my third term. It was nice to escape back to rural New York where I could avoid doctors appointments for a few months before starting the cycle again. My day-to-day actions were the same, but I couldn’t shake the new stigma placed upon me. “Your people.” It was the first time that someone had explicitly, without reservation, called me disabled. It was the first time that the line was so explicitly drawn. Despite a growing list of symptoms, I had waited for the break to hold all of my diagnostic appointments. Winter break had been a staggering experience – my body poked and prodded and my personal history scrutinized. I had never been categorized in such stark terms. I was disabled. I had been disabled my whole life and yet had no idea. Suddenly everything I considered normal was reversed and the proof lay in my body. The holidays were tinged with tragedy. Everyone pitied me, the young woman who gained a slew of diagnoses. The young woman who lost the pain-free, active, able-bodied future that should have been guaranteed.

It was easy to shut myself off from the strained smiles, teary eyes, and endless questions. As I struggled with the change in identity politics, I turned towards academia to help make sense of the shift. I was nervous to adopt the term ‘disabled’ and hoped that reading broadly in disability studies would help me make sense of my lived experience. If I belonged to “a people” I should at least know their history. I should recognize the major leaders of the rights movement, shifts in political and legal ideology, and theories behind the oppression of disabled bodies. Maybe understanding how disabled individuals made sense of their world, I thought, would help me make sense of my own.

That winter I read everything. Sitting in the library looking out across Taylor Lake I read author upon author – Paul Longmore, Simi Linton, Michael Rembis, and Susan Burch were some of the first I came into contact with. I read prologue after prologue where writers shared their experiences. Most argued that their inspiration came from a pivotal moment in their life as a disabled person. I cried reading their anger, resolution, frustration, and perseverance. I was inspired and determined to claim my new identity. I could still have whatever aspects of able-bodied life I desired provided that I found decent medical support, symptom management, and fostered a loving community around me. I was empowered and resolute that this was not simply a loss, but a shift to a different way of living.

The following year I wrote my undergraduate thesis while studying abroad in London. I walked by the British Museum every day and researched in the most stunning archives I have ever set foot in. I traveled to Ireland, Croatia, the Netherlands, and throughout the UK. I found ways to accommodate my travels with braces, exercises, and new pain management techniques. My cohort acknowledged my disability without it feeling like a burden. I proved to myself that it was possible to live the kind of life I had always wanted, and I returned to Colgate.

It was my senior year and I was debating the question “what’s next?” I loved writing my undergraduate thesis, a study on captivity narratives written by British women during the Sepoy Rebellion of 1857. As much as I enjoyed the topic, I didn’t know whether I wanted to build an academic career on it. I had been set on teaching history at a college level from the 10th grade. My four years at Colgate were geared towards grad school, but over the course of my undergrad career my interests shifted. I had specialized in early contact studies between Native American peoples and European colonizers. During the application process I realized I wanted to shift from Native American studies to the nascent field of disability history. I had been reading in the field for two years at that point, and the gaps in the historiography were clear. Very few articles had been published on disability in early America. Fewer still on the experiences of disabled persons.

When I interviewed here at UVA and met my prospective advisor he asked about my interest in disability studies. I had disclosed my disability in my application essays, a decision that I continue to stand by. At times it’s frustrating to wonder whether my disclosure affected my admission status, but I think it’s important to push for transparency. Whereas I felt uncomfortable disclosing my status, I hope that my decision to do so will help increase visibility of disabled persons in higher education.

When my advisor asked about research topics I was (perhaps naively) adamant about reclaiming individual experiences. I focus on early America – both the colonial period and Early Republican periods, which poses issues when considering source materials. I wanted to start from the most simplistic question we have in history – “How did they live?” There was so little published on day-to-day experiences of disabled individuals in colonial America or the Early Republic that I was slightly dismayed. Where were “my people?”

My research now has evolved beyond the question “How did they live?” My master’s thesis focuses on the disabled public of early Philadelphia in the 1820s and 1830s. I began the research by looking at Blockley Almshouse, the first public hospital in America. Reading the history of the institution I came upon a much more fascinating subject – an outpatient program that supported disabled individuals in the city. Going page by page through the early papers of the Almshouse, I realized that there was a larger story to tell about institutionalization and the evolution of the term “disability” in the early Republic. I reviewed minutes of the Guardians of the Poor (the main government agency to dispense poor tax aid in Philadelphia) as they established the Almshouse and the outpatient program. I looked through the Minutes of the Guardians of the Poor, Almshouse patient records, poor tax lists, maps of city streets, physician records, and interviews with disabled individuals. Going over these records I insisted on telling the story from the patient perspective, and to my luck I found records that detailed the people I so desperately wanted to reclaim. I continue to sort through their records, teasing out the information hidden within what has been considered government records. So far I’ve been able to find the following:

  1. Disabled people had families – large ones at that. They married, had children, grew old, and functioned as independent heads of household despite their impairments.
  2. Disabled people actively protested institutionalization. They complained that the institution was more expensive than outpatient aid (and they were absolutely correct).
  3. Disabled people worked just the same as other laboring classes in early America, choosing jobs that could be modified to meet their needs. Stationary jobs were prioritized because they demanded little mobility and allowed individuals to work from home where they might surround themselves with family members and tools as accommodations.
  4. Disabled people are present in the records. Whether we think about the government officials (Guardians of the Poor) who interviewed them, the court cases in which they appeared, or their residence patterns in the city – it is clear that disabled individuals were publicly visible and contributed to the overall urban community.
  5. Echoes of disabled voices shine in government documents, even in medicalized histories. Disabled persons advocated for their right to tax relief. They demanded pensions on the basis of their compromised economic capability and named their disabilities in order to legitimize their claims. Terms were not simply imposed by doctors, but actively claimed in order to excite sympathy and to demand protection.

I’m not sure where this research will take me as I move forward with my dissertation. I’m not sure what other truths I might uncover about the experience of disability. Despite the overall mystery that clouds their lives, I’m looking forward to uncovering the history of disabled peoples in America. It is explicitly apparent to me now that disabled individuals are everywhere in history – combatting norms, posing as paradoxes, foiling able-bodied society, resisting efforts to be rehabilitated, and showing pride in living a different lifestyle. While five years ago I was scared to consider myself a part of their ranks, I now proudly claim them as “my people.”

* * *

Nicole Schroeder graduated from Colgate University with a Bachelor of Arts in History and Classical Studies in 2015. Currently she is a second year PhD Student in the Corcoran Department of History. Nicole specializes in early American medical history, particularly in the colonial and Early Republican periods. She is involved on grounds with Chronically Ill and Disabled Cavaliers and the Disability Action and Advocacy Committee. In her free time, she enjoys traveling and visiting her family/friends in the Northeast. 

An Introduction to Pediatric Rehabilitation Medicine at UVA

By Christopher Lunsford

Most medical students major in the ‘hard’ sciences to prepare for medical school. College majors such as Biology, Chemistry, and Physics provide a foundation for the intense research and clinical work to be done in preventing, diagnosing, treating and curing diseases. However, I majored in Philosophy because I wanted a different type of foundation for the work that I do. My work is very different from the type of Medicine most people are accustomed to. The familiar type of Medicine can be off-putting for individuals with disabilities, because there is often a said or unsaid feeling that the disability defines the patient and it must be cured and/or that a person is broken if curing the disability is not possible. It is up for debate how common this is, but it most certainly happens. That fact saddens and angers me, because Medicine can and should rise above such falsities.

I am the only Pediatric Rehabilitation Medicine (PRM) physician at the University of Virginia. Why only one PRM physician?  Because there are so few of us in the country (5 licensed in VA; 237 licensed nationally). Before I came to UVA to practice in 2015, there had never been a Pediatric Rehabilitation doctor practicing in Charlottesville. PRM is a sub-specialty of Physical Medicine and Rehabilitation, another field most people haven’t heard of and no, it’s not the same as Physical Therapy.

The PRM subspecialty uses an interdisciplinary approach to address the prevention, diagnosis, treatment, and management of congenital and childhood-onset physical impairments including related or secondary medical, physical, functional, psychosocial, cognitive, and vocational limitations or conditions, with an understanding of the life course of disability. Given this quite technical description, it would be quite possible to miss the fact that an important word is missing: curing. I don’t cure conditions; even if there is a curable aspect to a condition, I am not the physician my patients would consult regarding that cure.  To reduce the long description above to its essence, we can say that I treat to maximize function and quality of life. As an example, I work with kids who have conditions like cerebral palsy to decrease the impact of high muscle tone on patient and family identified goals such as walking or self-feeding. The PRM official announcement letter is attached to this post, and while I see a large number of diagnostic categories, it is worth noting my practice is not focused on conditions where the primary obstacles are related to a developmental or behavioral condition such as autism or ADHD.

I am a problem solver especially trained to solve problems of differently-abled individuals who are still growing up. While I respect the science of medicine, my sub-specialty, more than most, relies on the art of medicine. If you have the time and interest, you may want to google “art of medicine” and disability and read the first several hits. While I do not claim to have all the answers to questions raised by this subject, I am immersing myself in those questions, hoping to find one answer at a time.

My work at UVA is still taking shape. I am technically filling a void and finding gaps in the care continuum for my kids, but that sort of meta-speak doesn’t truly explain the value of my work. I would be remiss not to make it clear that UVA has offered amazing care to these families long before I got here. The amazing team of developmental pediatricians, primary pediatricians, pediatric orthopedists, pediatric neurologists and others have been in Charlottesville caring for these kids and their families for years. Their work overlaps with mine in many ways, which makes my job both very difficult and very rewarding. The difficulty is making sure not to replicate what someone else is doing; the reward is finding that new goal to work on.

I am a jack of all trades, master of none, for pediatric disability. Modern medicine has gone to the extreme on valuing specialty care and the care of rare pediatric conditions is no exception. However, patients can have over 10 doctors following different aspects of a condition, and coordination of all of that disjointed care most often falls on the families. The irony is that while my career path opportunity is also a product of the super-specialty push, my training is to look at and value the whole child when making my treatment plan. I often tell my families, “I may not know the answer, but I probably know who knows the answer.” In that way, I use my ‘master of none’ status to the benefit of my kids.

What is the best role for a Pediatric Rehabilitation doctor in a place like Charlottesville? While I’ve been in Charlottesville for just over two years now, I can’t say I truly know the answer to this question. It’s an organic and individualized process. I think I could answer what role I should play for a specific patient much easier then what role PRM should play in Charlottesville now and in the future. Do we need more doctors like me? Perhaps, but the quality of relationship between disability and pediatric medicine isn’t just a function of how many PRM doctors we have here. Every day, I think we are striving to become more person/family first as well as more disability positive. There are many efforts helping us get there such as this blog and other groups at UVA, but we could benefit from even more.

Function and quality of life. Who can argue that these are important to medicine? And yet, how often do we feel like our doctors don’t help us with what’s important to us? I am a patient and a person with a disability as well, and I am frustrated with our medicine system’s inability to meet my needs at times. I try to remember that frustration when I see my families. Medicine isn’t perfect and never will be, but putting patients first in order to find ways to help is worthwhile. That’s the mission of my Pediatric Rehabilitation practice in Charlottesville.

* * *

Dr. Lunsford is an assistant professor in the Department of Physical Medicine and Rehabilitation and the Department of Pediatrics at the UVA Health System. He has been an attending physician with these departments since 2015. He is a member of the American Academy of Physical Medicine and Rehabilitation (AAPM&R) and the American Academy of Cerebral Palsy and Developmental Medicine (AACPDM). He is also one of the co-chairs of the pediatric neuromuscular conference that occurs every December at UVA.

Dr. Lunsford graduated from Wake Forest University with a Bachelor of Arts in philosophy before completing his medical doctorate at the UNC School of Medicine. He completed his transitional year program at Spartanburg Regional Hospital. He completed his residency in physical medicine and rehabilitation at UVA, followed by a fellowship in pediatric rehabilitation at the University of Pittsburgh. 

Outside of work, Dr. Lunsford spends time with his family and church. A kid at heart, Dr. Lunsford enjoys games and outdoor activities.

To the parents of children who stare at my disabled daughter

Written by Daniel Willingham.

Staring, especially by small children, is one common reaction to physical disability.  One professor offers his thoughts and advice to parents of children who stare at his disabled daughter, Esprit.

Read the Full Washington Post Article

Daniel Willingham is Professor of Psychology in the Department of Psychology at UVa.

Parents: Why our second-grader is not going back to school

Co-written by Vikram Jaswal.

How to educate children with disabilities is one of the most difficult conversations in education. One couple makes the case for their autistic daughter’s inclusion: opportunity and access.

Read the Full Washington Post Article

 

Vikram Jaswal is Associate Professor in the Department of Psychology at UVa.

Expanding Diversity to Include Neurodiversity

By Angela Lea Nemecek

It has become axiomatic at our university that diversity is good and important. Race, culture, gender, religion, nationality, sexuality, physical disability, and other features of being human vary in vast and important ways. Most of us acknowledge that our UVa community is stronger and more vibrant because of the presence of this diversity, which we celebrate with multicultural student events, Pride Week, Disability Acceptance Week, and many more. The Diversity Dialogues, which I attended on Grounds last November, provided a forum for us to think about why diversity matters and how we—as faculty, staff, and students—can commit more fully to it.

Diversity isn’t only important at UVa. Research suggests it makes for better workplaces overall. It makes us think better, work harder, and be more creative.  Although recent events like the UVa hate speech chalkings and the persistence of the “Not Gay” chant reveal that we have a long way to go before we could say we’re all truly “walking the walk” of diversity and inclusion, the inherent goodness of diversity isn’t something most people on Grounds question in polite conversation. We’re talking the talk. But what about neurodiversity?

For those unfamiliar with the term neurodiversity, let’s start by defining it. It’s a wide-ranging term that includes many kinds of being different: from autism to ADD/ADHD, bipolar to atypical sensory processing, neurodiversity is a term meant to acknowledge that human minds, like human bodies, come in a variety of forms. From a neurodiversity standpoint, all of these ways of thinking, feeling, and processing serve a purpose; none is inherently superior or inferior. There might be differences, but there are no “disorders.” Neurodiversity says that we can drop the disease language and talk neutrally about human minds in all their diversity.

So are we “neurodiverse” at UVa? Do we accept that there are many kinds of minds, and that all of them add something of value to our community? In the last year, I’ve had conversations with at least a dozen Wahoos who fit under the very spacious umbrella of neurodiversity—students, faculty, staff, and alums. Some have been diagnosed with clinical or seasonal depression, some experience bipolar, some identify as autistic. I’ve asked them about their experiences—what it’s like to be them at UVa. A theme has emerged often, voiced best by one of them: “There is no space for me to be at UVa.”

From the Light it Up Blue campaign, which many autistic people feel marginalize them every April, to the language of illness and pathology that some students with mental health issues feel is woven through the discourse surrounding mental health on Grounds, neurodiversity is not a way of thinking about minds that has taken root at our university. Autism Speaks is looking for a cure for autism, not seeking to understand the lived experiences of autistic people and whether they want a cure. (Spoiler alert: they mostly don’t.) Some grassroots mental health organizations provide space for self-advocacy that empowers neurodiverse people, but if you seek psychological help you often find yourself squarely back inside the language of pathology.

I would argue there are some understandable reasons people are cautious about a neurodiversity perspective. Every way of thinking and processing the world can’t really be ok, can it? I mean, some people are spurred to do terrible things by thoughts and feelings; some people struggle their entire lives with what they would, themselves, term mental “illness.” We can’t unquestioningly celebrate brains; we have to acknowledge that sometimes brains cause problems. In fact, a story of a brain causing problems was told quite articulately by the last blogger on this site.

But can we acknowledge that sometimes brains cause problems—and make space to hear about those problems—without always resorting to a disease model? I think so. What neurodiversity offers us is not a rubber stamp of unquestioning acceptance on everything human beings ever think, feel, and do, but a general belief that minds are complicated and people’s experiences are different and we should be open to listening. Neurodiversity puts the person with the differences at the center of the conversation about those differences, rather than building an apparatus of “treatment” or “help” around them without their consent. Disability activists’ famous refrain “nothing about us without us” surely reverberates in the neurodiversity perspective.

So what does it mean on a practical level to implement a neurodiversity approach at UVa? First, seek out the perspectives and voices of the groups you’re talking about instead of making them mere objects of knowledge or aid. Remember that autism isn’t just a “disorder” affecting children whom you hold fundraisers for; you work and go to class with autistic people.

Second, when you find out someone is neurodiverse, pay attention to how they want their neurodiversity to be talked about. Should you call them a person with autism, or an autistic person? Should you say they have bipolar disorder, or drop the “disorder?” Should you say they have depression or have been diagnosed with it? Just as with gender pronouns, if you don’t know how someone would like to be referred to, ask.

And finally, pay attention to how you deploy diagnostic labels. It isn’t cool to say that guy in your office who seems to lack social skills is “probably kind of autistic” any more than it would be ok to use the R word. If you’re feeling scattered today, you’re not “having an ADD day.” These ways of speaking are no different than racial slurs. When you use them, you dismiss the lived experiences of neurodiverse people and reduce them to stereotypes and metaphors.

Remember: People are human. You will sometimes mess up, use the wrong words, or say insensitive things. No one expects you to be perfect; they expect you to try. UVa can do better when it comes to neurodiversity, and it starts with you.

Angela Nemecek is Program Manager of OpenGrounds at the University of Virginia and runs this blog on behalf of the Disability Advocacy and Action Committee. She received her Ph.D. in English Literature from UVa in 2012 and is currently working on her Master of Social Work at VCU.

College with a Neuro-atypical Spin

By Rachel Kallem Whitman

Like so many other ambitious Northern Virginians, I knew I wanted to attend the University of Virginia before I had even made it out of 6th grade. Everything in Arlington boasted about the prestige of UVa, from famous alumni to the Cavaliers. My neighbors’ well-manicured lawns were decorated year-round with banners pledging allegiance to the illustrious UVa, and while occasionally you happened upon a Virginia Tech family with a “Hokies VT” flag spiked in their front yard—or even more sparingly still a green and gold William and Mary pennant—UVa unified the neighborhood. At least this is how I remember it. UVa was my destiny and considering I was smart, driven, goal-oriented, in state, and had a supportive family, there wasn’t a lot standing in my way. UVa was the best and I wanted to be affiliated with the best. UVa was my plan.

Bipolar disorder was not a part of my plan. I was 15 years old when I first suspected that something wasn’t quite right. The way my brain pieced together tangential ideas in a state of hurried chaos, how I put these ideas into erratic, often peculiar action, and how my emotions were louder and more unpredictable than anything else in my life suggested that something was broken. But I didn’t want to admit anything was wrong, that felt synonymous with defeat. I was able to keep this secret with moderate success for two more years until I had my first full-blown manic episode that nobody could ignore. I was promptly and accurately diagnosed with bipolar 1 disorder and prescribed a long list of pills that promised to help me manage my symptoms.

However, to my utter dismay the combination of capsules and tablets left my brain feeling damp, foggy, and sluggish; side effects seemingly worse than bipolar’s symptoms. I was 17 years old and I identified as a bright young woman who was going to go to college, but under the saturated weight of my mood stabilizers and antipsychotics I stumbled just trying to assemble coherent ideas. I struggled to reconcile the abilities and expectations of the Rachel who lived before the diagnosis with the Rachel who now battled it daily. The incongruence was stifling. I was a determined Northern Virginian with a UVa flag on her lawn, I had been accepted early admission, and I vowed that nothing would stop me from making my pilgrimage to Charlottesville. Especially a diagnosis that I refused to recognize and pills that literally slowed me down. I told myself that with my willpower and discipline I could do this on my own and holding firm with this rationale I flushed my medications down the toilet. I moved into a fourth floor room in the Dobie Residence Hall that August.

In my case bipolar 1 disorder consists of cyclical episodes of hypomania, mania, mania with psychotic features, and depression. In my every day life this expresses itself as undulating cycles that peak and plummet based on my current brain chemistry, my environment, and whether or not I am doing something self-destructive or self-saving. When left untreated, my illness quickly escalates in severity and intensity resulting in subsequent episodes becoming increasingly more vitriolic.

Untethered hypomania resulted in electric mad-dashes of energy in which my brain buzzed furiously with ideas so much so I could write 10 page papers in an hour. Hypomania gave me unquestionably brilliant revelations like the decision to funnel all of my grocery money into buying George Forman Grills, which I told my roommate was a sound investment strategy to plan for my future. Hypomania “blessed” me with the effervescence, charisma, and invincibility to go out to Rugby Road, drink and dance all night long, and after losing a shoe somewhere on the walk back to the Lambeth dorms, confidently decide to take a nap on a patch of grass, stretched out like a happy starfish because life was sublimely beautiful.

This “life-of-the-party” lifestyle was unsustainable and the damage done by sincerely believing that I lived without consequences (a trademark of hypomania) would rocket me into mania. Mania made everything feel urgent and unsettlingly perfect. Every sparkly thought rattling around in my head was worth sharing to everyone, everywhere, because I was an unparalleled genius. I spoke rapidly (there was no other way), I didn’t eat (food slows you down), and I succumbed to my bizarre delusions. During my first year I stopped going to German class because if I bought any of the textbooks I would actually be buying brand new uniforms for a secret society of Nazis. Mania seriously interfered with my life.

Unchecked mania catapulted me into extreme agitation and paranoia and if I wasn’t careful I would start having psychotic breakthroughs characterized by disorientation, fear, and alarming behavior. I was hospitalized twice during college due to psychosis. During my second year I told my roommate that I was a messenger from God and I needed to kill myself to get back to heaven. Third year I stopped eating because I was convinced the police were trying to poison me and I cried inconsolably for a week because it was the apocalypse. I was left with my delusions and hallucinations in a psych ward as I watched reality unravel.

Following psychosis came the swan dive into debilitating depression where all I could do was cry, watch all hope slip through my fingers, and be numb to anything and everything around me. It is hard to conjure up a story from a time when I was depressed because those memories are mostly dark black smudges.

I refused to take my medication and I refused to take care of myself, so this was my life.

Mental illness is exhausting. My first three years at UVa played out in a series of eventful, cataclysmic episodes that felt completely out of my control. I tried to do all of my schoolwork when hypomania made me productive, I embraced mania’s recklessness in order to have memorable date functions, one-night stands, and welcome substances into my life with open arms, I locked myself in my apartment when the psychosis crept in and seized me with paranoia, and when depression swallowed me whole I would look in the mirror and wonder “who is this sick person?” She had no place in my plan but there I was, tired, frenzied, with my reserve of ambition slowly petering out.

Your college years are the perfect temporal breeding ground to cultivate a sense of identity. First year is a year of firsts, moving away from home, taking a stab at being interdependent, forging new relationships with a diverse group of people who have different life experiences than your own, experimenting in every sense of the word, learning what your boundaries are and how to enforce them, and establishing goals and priorities. In college you can change your major, pick your roommates, decide who to hang out with and what you do with your time. It is a time of decision-making and adapting. You have dedicated space to try on new identities. Some might say that this period in your life provides the opportunity to re-invent yourself but I believe for most people this time is actually spent figuring out who you truly are, understanding that person, and accepting that just because plans change doesn’t mean you give up.

Looking back I had a typical college experience but with a neuro-atypical spin. I applied to the Curry School of Education committed to becoming a teacher and the day after I was accepted I impulsively changed my mind and declared a psych major, I made lifelong friendships that have survived moves all over the world, I painstakingly learned how to squish my large bubbly handwriting into a Blue Book, I had my heart broken, and Littlejohn’s was my best friend at 3am for four solid years. But I also spent four years learning how to manage an illness that I didn’t deserve but couldn’t deny I had, accepting that my plan had to include taking medication and going to therapy all of which actually made me healthy not a failure, and celebrating the fact that despite living with a mental illness I could still accomplish my goals. While I wanted to compartmentalize the Rachel who was smart and promising and the Rachel who was sick and falling apart, I was just one person, and all of me earned my place at UVa, worked hard to get through it, and graduated with immeasurable pride.

I live in Pittsburgh, PA now where I am a doctoral candidate at Duquesne University in the School of Education with a focus on disability studies. And while I must admit I don’t have a UVa or Duquesne flag propped up on my lawn, I don’t believe I have a set destiny or prescribed master plan either. I am carving out a future that is defined on my own terms based on the decisions I make every day. My four years as a Wahoo taught me that I have the power to author, adapt, and advance my own plan, all with the guiding principle that my diagnosis doesn’t define me, my accomplishments do.

Rachel Kallem Whitman graduated from UVa in 2007, majoring in psychology with a minor in Anthropology. You can read more blog posts by her here.

 

 

 

Disability and its Metaphors

By Julianne McCobin

As a graduate student in English at UVA, I study stories and how they shape our communities. Though one might not immediately notice it, experiences of physical and mental disability occur all throughout our books and movies, from the forgetful fish Dory in Finding Nemo to the Quebecois wheelchair assassins in Infinite Jest. Often plots revolve around resolving or “fixing” a disabled character, and inevitably, disability serves as a plot device rather than as a complex way of being in the world. Even the Steadfast Tin Soldier, who has only one leg and longs for the ballerina he imagines to be like him, drives the fairy tale forward with his search for bodily “wholeness.” In the words of disability studies theorists David Mitchell and Sharon Snyder, disability demands a narrative. If a body isn’t normal, we want to know how and why.

Because of this desire to interpret, disability becomes metaphorical—something that must be explained, understood, and ultimately overcome. This is written everywhere in our stories. For example, a well-known book for students interested in literary analysis, often assigned during high school, How to Read Literature Like a Professor, contains chapters titled “He’s Blind for a Reason, You Know” and “And [It’s] Rarely Just Illness.” Students quickly learn that, in literature, disability is significant and signifying: heart disease almost always symbolizes a hero’s grave moral flaw; an amputee must crave wholeness; blindness indicates ignorance or naivete (as knowledge is equated with light and sight, literally “insight”). These cultural myths show how our society understands disability to be indicative of some deeper, metaphorical failing. Indeed, Jake Barnes, in Ernest Hemingway’s classic The Sun Also Rises, isn’t only missing a body part: he’s mourning a loss of normative masculinity brought on by the war. In all their variations, our cultural metaphors surrounding disability increase its stigma while often obscuring the actual experiences of people living with disabilities.

And this doesn’t only happen in books: these metaphors carry over into our everyday language, into how we narrate our own lives. Susan Sontag’s treatise on the rhetoric of cancer, “Illness as Metaphor,” attests to this power of language to influence how people perceive and describe disability. In 1978, while undergoing treatment for cancer herself, Sontag lamented that, unlike other maladies, cancer was viewed as a unique and highly symbolic disease, often accompanied by rhetoric that compared cancer to an invading army. This resulted in a specific kind of victim blaming, and many patients, feeling personally responsible or weak in some way, asked themselves, “Why me?”–as if some personal failing had brought this punishment on them. Instead of cancer simply existing as a basic malfunction of the body, the rhetoric of cancer caused people to internalize the metaphors surrounding disability. People recovering from cancer then had to contend not only with the disease itself but with all its social and emotional entanglements.

It’s important to notice this rhetoric and pay attention to portrayals of disability not only because representation matters but also because the language of disability has long been used to exclude and demean marginalized groups in the United States. These are stories of another kind. In fact, as Douglas Baynton points out in his article, “Disability and the Justification of Inequality in American History,” popular arguments against civil rights movements in the 19th and 20 centuries hinged on accusations of disability. In other words, dominant groups justified their own superiority and access to political representation through arguing that other groups could never be equal or included in the civic process because they did not possess the same capacities as “normal” citizens (read: white, straight men).

For example, a common argument against women’s suffrage focused on female fragility, a supposed lack of mental endurance, and predisposition to hysteria. Popular Science Monthly even wrote that educated women were “sick and suffering before marriage and are physically disabled from performing physiological functions in a normal manner.” Not very subtle. Typical arguments for slavery took similar approaches, claiming, among other things, that African Americans did not possess the intelligence or ambition to succeed on their own (or be relied on to vote).

Unfortunately, instead of fighting this ideology—instead of rejecting able-bodiedness as the grounds for citizenship or public participation—groups lobbying for rights sought to show how they weren’t disabled. Often falling back on racist and gendered stereotypes to gain traction, marginalized groups denied their defects. The suffragettes, for example, attempted to disassociate themselves from African Americans, felons, and other groups by calling others “lunatics” or “idiots.” The implicit understanding of rights as based on (perceived and normative) capabilities, thankfully, has slowly shifted, culminating in the passage of the Americans with Disabilities Act in 1990, which prohibits discrimination against people with disabilities and reminds us of the important fact that disability cannot and should not exclude one from citizenship.

Language matters. Not only do common metaphors of disability in stories and everyday life reinforce that disability is something to be overcome or fixed, they also wrongly assume that the only “real” human experience, or the most human desirable experience, is based on a recognizably normal body. Through challenging a single narrative and surrounding ourselves with many stories—ones that don’t merely view disability as a plot device—we can embrace alternate forms of embodiment. Though we can’t live without metaphors, we can pay attention to which ones we choose and how they sculpt our world.

Julianne McCobin is a doctoral student in the Department of English.

 

Autism: From Neurons to Neighborhoods

By Vikram Jaswal

Autism is a lifelong, neurodevelopmental condition whose cause is unknown. It’s thought to affect around 1 in 68 people (or maybe even 1 in 45), and is evident early in development, usually by the age of three. Autism is most commonly associated with social differences. For example, autistic people may show more interest in objects than people; non-autistics tend to show the reverse. But autism is a spectrum: Some autistics talk too much, some don’t talk at all; some are bothered by bright lights and loud sounds, some thrive on them; some score off the charts on IQ tests, some are unable to take those tests. There’s a saying in the autism community, “If you know one person with autism, . . . you know one person with autism.” Continue reading Autism: From Neurons to Neighborhoods

What Philosophers Get Wrong About Disability

By Elizabeth Barnes

I’m a philosophy professor, and among philosophy professors it’s pretty common to assume that having a disability is something that makes you worse off. More strongly, it’s pretty common to assume that having a disability is something that makes you worse off not simply because of lack of accommodation, stigma, or prejudice. Rather, there’s something about disability itself that’s bad for you—or at least that’s less good than the absence of disability. Continue reading What Philosophers Get Wrong About Disability

Saying Yes to College for Students with Intellectual Disabilities

By Bill Therrien

Jessie always wanted to go the University of Iowa. Going to UI was a family tradition. Both her parents and her two older siblings went there and she spent many a Saturday at Kinnick Stadium watching her Hawkeyes play football. But unfortunately for Jessie she would never realize her dream. She grew up in a time when people like her didn’t get to choose what they wanted. They were excluded from pretty much all of society. In fact if it wasn’t for Jessie’s mother spurning her doctor’s advice, Jessie wouldn’t have even been raised by her parents at all. She instead would have grown up and likely spent most of her adult life in an over capacity and understaffed institution. This was the fate of many individuals with intellectual disabilities until not so long ago- up to the mid-1970s. Continue reading Saying Yes to College for Students with Intellectual Disabilities