Academic Accessibility, a Flashback

by Elizabeth Ellcessor

Cover of the 1981 brochure, “The University and Section 504: A Guide to Accommodating Handicapped Students.” The cover is orange, with black text and a black International Symbol of Access.

Source: University Archives, University of Virginia. VP for Administration, Office Administrative Files 1983-1984, Box 4 Folder 21.

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Upon my arrival as a faculty member at the University of Virginia in Fall 2017, I began brainstorming methods for teaching courses about disability and mediation. While my research has long focused on how disability creates specific forms of media experience, how disability is represented, and issues surrounding media accessibility, I had not previously brought these topics to a classroom.

Inspired by work on Universal Design for Learning, as well as more in-depth studies of academic access from Tanya Titchkosky, Jay Dolmage, and Margaret Price, among others , I wanted to make my classes broadly inclusive while also proactively exposing students who do not identify with disability to the alternative ways of engaging with media and experiencing university classes that many people with disabilities routinely experience.

In the interests of universal design, I abandoned an attendance policy. Instead, students could receive credit for spoken participation in class, as well as for being active on our online forums and crowdsourcing notetaking wiki from within or outside the classroom. This structure eliminated the need for accommodations for students who may require flexibility regarding attendance, due to chronic health conditions, doctors’ appointments, fatigue, or injury. It also provided a means of ongoing access for students with attendance needs unrelated to disability; students who travel for intercollegiate athletics, who have a particularly busy week for whatever reason, or who made inconvenient travel plans are all provided with this alternative means of class engagement.

In the interests of exposure, students in my Media & Disability class (MDST 3505) are now beginning a group audio description project. Building on the ideas laid out by Georgia Kleege and Scott Wallin, this project asks students to work together to consider what information creates media access, how to write for access, and how alternative means of experiencing audiovisual media can coexist with, and be as valuable as, a mainstream viewing experience. Similar exposure happens via the regular screening of captioned media content. Finally, through the inclusion of independent disability media texts, such as the forthcoming documentary Code of the Freaks and the webseries My Gimpy Life, along with videoconferenced conversations with their creators, UVA students are exposed to disability cultures and media criticism.

Notably, my steps toward disability inclusion and exposure are made possible by the normalization and availability of digital media and the internet; without these media, it would be difficult to create alternative spaces for participation or to ask students to create accessible media.

This dependence on twenty-first century media access was driven home when I stumbled upon a brochure in the University Archives. I had gone to the archives, housed in the basement of the Albert and Shirley Small Special Collections Library, to pursue a line of research about the blue light emergency phones that blanket American universities. While combing through the files of the VP of Administration from the early 1980s, I found a file labeled “Handicapped Access, 1981-1983.” Inside, I found several memos, a letter from the Justice Department, and a small orange brochure titled “The University and Section 504: A Guide to Accommodating Handicapped Students.”

The brochure was dated 1981 – coincidentally, the year I was born – and described itself as a resource for students, administrators, staff, and faculty. A small, typewritten insert addressed disabled students directly, instructing them to notify the Section 504 Coordinator as a “voluntary self-identification will allow the University of Virginia to prepare appropriate support services to facilitate your learning.”

Much of the brochure is comprised of instructions and options for providing student accommodations. Some seem quite familiar, over thirty years later. Faculty are encouraged to make an announcement asking “any student who feels that he or she may need an accommodation for any sort of disability” to make an appointment to discuss accommodations in office hours. Today, UVA’s Student Disability Access Center provides several options for instructors to include in course syllabi, each of which includes an invitation to meet and discuss accommodations. For instance, “Option 1” reads (in part), “If you anticipate or experience any barriers to learning in this course, please feel welcome to discuss your concerns with me. If you have a disability, or think you may have a disability, you may also want to meet with the Student Disability Access Center (SDAC), to request an official accommodation.”

The existence of SDAC is, obviously, a major difference in the academic landscape for students with disabilities. It can provide official accommodations, offer assistive technology, and mediate between students and instructors. However, the growth of digital learning materials, accessible formats, and online course management systems have also vastly altered the accessibility of academia for students.

The 1981 brochure is focused almost entirely on physical classroom accessibility. Some of the accommodations suggested include allowing preferred or front row seating, presenting material in written and oral formats, providing a notetaker, or ensuring physically accessible classrooms when needed. By contrast, many of the resources provided by SDAC focus on the accessibility of PDf documents, videos, and other media materials.

Finally, much of the brochure, serves as a kind of introduction to possible differences caused by disabilities, and in this regard it is perhaps best understood as a historical time capsule. It cautions that D/deaf students may make errors in written English, reminds that seeing eye dogs are allowed in class, and warns that many “learning disabled students” “spend inordinate amounts of time on their assignments, depriving themselves of sufficient sleep.” Some of these remain valid reminders, while statements such as that about students with learning disabilities would certainly be considered outmoded and unduly prejudicial in a contemporary context. Notably, only vision, hearing, mobility, and learning disabilities are addressed. As more students now come to universities with psychiatric disabilities and attendant needs, different information would no doubt be included in updated resources.  

While there is certainly more work to be done in creating accessible and inclusive academic environments, this artifact of an earlier period in UVA’s history illustrates a significant change in resources, awareness, and policies regarding disability on Grounds. I share this document, and these excerpts, so that as we move towards greater access, we can also appreciate how far we’ve come.

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Elizabeth Ellcessor is an assistant professor in media studies. She studies media access and inequality, and her book Restricted Access: Media, Disability, and the Politics of Participation (NYU 2016) is the first history of web content accessibility. She is currently conducting research on emergency media technologies.

Redirection and Vulnerability: When Work Becomes Personal

By Rupa Valdez

Last night, in preparation for a seminar I’ll be giving to all first-year medical students, I watched Aimee Mullins’ TED talk titled “The Opportunity of Adversity.” At the end of the talk Aimee says, “if you had asked me at 15 years old if I would have traded prosthetics for flesh and bone legs, I wouldn’t have hesitated for a second. I aspired to that kind of normalcy. If you asked me today, I’m not so sure.” I saw myself in that statement. Six years ago, I was actively searching for a way to rid myself of the pain and physical limitations that come with my condition. Today, even if a “cure” were offered to me, I’m also not so sure I would take it.

Such a statement might sound incomprehensible. After all, would you voluntarily choose to live in the way that I do? I can walk around my house and office, but anything more requires a wheelchair. Lifting, typing, and using a touch screen are difficult. I haven’t driven a car for the past 6 years. The limitations I experience in my legs, arms, and neck mean that I rely on other people and technology to navigate my day-to-day life. I even require other people to navigate my technology. And then there is the pain, a constant, although inconsistent, companion. These physical limitations coupled with the dietary limitations from my chronic conditions create everyday challenges. Yet, these experiences have shaped the work I do and the way I work in ways I wouldn’t readily give up.

When I began college, I was able-bodied. Although the program I was in had a growing health care concentration, this didn’t pique my interest until years later. At 18, I assumed that after obtaining an engineering degree, I would go on to an MBA, JD, and corporate career. My interests were always eclectic though, and in my Junior year I went to France to study humanities and social science. During the months leading up to the trip and while there I developed severe acid reflux, food allergies, and asthma. For someone who had never experienced living with a health condition, the change prompted me to come home early.

Following this period was an intense introduction to the health care system and what it means to think about your health all the time. If personal experiences shape professional lives, this was the first time my health pulled me in a different direction. I began wondering if there might be a different career path worth following. I interned for Abbott Labs, began working in an engineering lab focused on health care research, and put off making any career decisions for a year while I learned as much as I could about this industry. Eventually, the work of my PhD mentor, which focused on supporting people with chronic conditions at home, resonated most deeply and I spent seven years studying with her.

A decade later, my health experiences again reshaped my professional life. By this time, I was an Assistant Professor whose research focused on understanding how people manage their health at home and creating technologies to support them. Although I must have interacted with many individuals who identified as having a disability, disability as an identity or experience was never an explicit focus. As the wheelchair became a permanent fixture and asking for help became commonplace, I began reflecting on stories told by previous participants in new ways. The research questions expanded, and I started reframing aspects of my work for grant agencies and others.

I find meaning in my work each day because it is personal. The stories shared with me by people with chronic illnesses and disabilities are my stories, perhaps not in their details but often in their essence. It is one thing to listen attentively or even sympathetically to someone’s difficulties. It is another to have a visceral understanding of their words.

I know what it means to have every day shaped by my health and the ways others see me because of it. When participants speak of frustration, I know what it feels like to have to wait eight months for an accommodation. When they speak of prioritizing what can be accomplished in a given day, I know what it feels like to decide if I am going to use my hands to read an article after work or respond to friends’ text messages. When they speak of community, I know what it is like to gain relationships that began with a shared identity of being disabled. If anything, this experience closes at least one of the differences between myself and the people I work with. I can’t study “them” without simultaneously studying myself.

If the meaning of one’s work comes in part from studying something personal, perhaps meaning also arises from working in a way that is personal. Or, to draw on Brené Brown’s idea that vulnerability can make our lives better, perhaps there is strength not only in studying a topic that makes us feel vulnerable but also in working this way.

As an academic, I was professionally “raised” in a hypercritical culture. Knowing that our writing will be subject to intense critique, we often resist sharing early drafts or any part of the formative process. During my doctoral work I was hesitant to share any writing that didn’t pass my own scrutiny. It was often version eight that I submitted for review, even to fellow graduate students.

I felt a mild form of terror the first time Ana and I began working together. When it became clear that I could no longer type, I had two months to finish analyzing my data and writing my dissertation. One of my most vivid memories is being a few minutes into a meeting with my advisor and telling her I could no longer take notes because my hands were too painful. When she suggested a “tandem worker” my first thought was that it sounded terrible. Writing a dissertation brings to life all of your insecurities: is this an accurate representation of the literature? Is this analysis insightful enough? Does anyone except me think this is important? I certainly didn’t want anyone else to see my early drafts or to be privy to my anxieties. Working with another person would bring about a second layer of anxieties that really boiled down to one question: would they think I am an idiot?

Now I have worked with a “tandem worker” for the past 5 and a half years. Over 20 different people have filled this role. The anxieties associated with working with another person haven’t disappeared; they are most pronounced when I begin working with someone new. But, even if I could, I’m not sure I would return to working alone. When I am sitting next to someone, I can’t stay in my own head. Sitting in silence while someone is waiting for you to start talking is incredibly difficult. So often I just start talking. Instead of allowing my inner demons to begin their critique, I open a dialogue with the incredibly bright person to my left. While academia is a solitary career path for most, for me it is a rich social experience. Every piece of writing I produce is shaped by the feedback, criticism, and encouragement I receive not only at the beginning and the end of a project but even midsentence.

I’m mindful of the risk of writing this essay and the ways in which my words may be taken as a story of “inspiration” or “transformation.” Perhaps there is some truth in the latter word. I certainly feel there are meaningful differences between the person I currently am and the person I was six years ago. But, I’m warier of the term “inspiration.” Most lives experience significant changes at one point or another. People adapt and grow in response. My significant change just happens to be more visible and one that people who haven’t lived it might hope never happens to them. At one point I would have felt the same way. On this end of it, I no longer do.   

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Rupa Valdez is an Assistant Professor in the Department of Public Health Sciences. She received her PhD in Industrial and Systems Engineering from the University of Wisconsin-Madison.

On Being Stopped in the Street by Strangers

By Paul Guest

Last week I was walking downtown to see a couple of former students read at a local bookstore. The day was sunny, and warm – pleasant in that abstracting way that draws one inward. I wasn’t paying attention to the man when he first shouted at me from his car, though I heard him, dully.

“Excuse me?” he almost pleaded, and I just knew that he was speaking to someone else. I kept going. Then I heard the hollow click of a car door opening and to my left I saw a tall, thin man rounding the front of his parked SUV.

“Excuse me, sir?” he said again, and I stopped, thinking he needed directions. Which way to Monticello? Which way to the Rotunda? I smiled at him.

“I have something to give you,” he panted, with his hand extended out to me.

Oh, no, I thought. I wasn’t confused or alarmed: disability is a very public thing, and in thirty-one years I have been stopped by strangers more often than I can remember. They usually want to know that their sons or daughters will not soon die; they want to know my secret. Or they want to share, to witness, to offer good news to me. They want me to be saved. Or, more rarely, they want to give me money. I’m not sure why, exactly.

You don’t have to give me anything, I said to the man, not looking down at his hand, which would have implied a kind of consent. “I know I don’t have to give you anything,” he whispered. “I want to.” When I didn’t say anything, he slipped a folded bill into my shirt pocket and climbed back into his car. When I got to the bookstore and checked my pocket, I found a hundred dollar bill. I haven’t yet spent it.

As I said earlier, this was not the first time I have been stopped in the street by a stranger. Once, in New York, a man hurriedly crossed the street beside me. That is a nice wheelchair you got there, he panted.

It wasn’t all that nice, the wheelchair, but I didn’t argue. I didn’t say anything, in fact. My silence suggested he try another way to reach me.

“Yo man, what’s the best nation in the world,” he asked, now on the other sidewalk.

I, uh, don’t know, I stammered, kind of stunned by this question.

“A donation!” he crowed, clearly pleased with himself, that clever pun.

I don’t have any money on me, I said, and some light fell out of his face. He was disappointed: not that I would not be giving him anything, but that I didn’t understand what he wanted.

It is true: I didn’t understand. He smiled sadly and turned back to cross again. The night was cold and dark and I had failed to console him.

Some years later, in Carrollton, Georgia, on the first day of December, the day was warm enough to sit outside. I was eating turtle soup for the first time. And the last, as I recall the muddy grit of meat in the dark broth. This moment was certainly before the curious advent of social media: I didn’t tweet about it, or post a filtered snapshot of my meal to the world.

I was sitting there, thinking about the rest of the day and the untidy stack of papers that waited to be graded when I returned home. I wasn’t thinking about my body. How it had been broken a long time ago and yet was still there.

I was thinking about what it meant to be eating turtle in the winter when a white-haired man stopped on the sidewalk. He was a lawyer, he said, in the office above the restaurant and wanted to know what I did. I never volunteer that I’m a poet; I say that I teach English.

“That was my favorite subject in school,” he beamed. He loved Faulkner. He loved O’Connor. He asked if he could sit at the table with me and I said yes.

“What happened to you,” he asked, his voice soft as a bruise. He looked away towards the town square and all the people out on their lunch breaks.

I told him: how I broke my neck in a bicycle accident at age twelve. That it had been, at that point, twenty years.

The man seemed to vibrate with sadness. He was sick with some sort of grief.

“I came into today to catch up because I haven’t been working much lately. My son – I take care of him now. He was a freshman at the University of Georgia when he got into a car wreck. Rolled his car. The window was open and he lost an arm and suffered a head injury. He doesn’t speak anymore and his mother passed away when he was in high school.”

I am so sorry, I said. He was quiet for another moment.

“Do you think he will ever get better?”

I don’t know.

“I don’t think he will. The doctors say he won’t. I have to learn how to be alright with that.”

He put his hands on the table as he stood up.

“I’ve taken too much of your time. Thank you for listening to me.”

And that was it. I saw him once more in my time in Carrollton. At a distance across the square as he climbed into a truck and drove away. I don’t think he saw me.

To this day, I wonder about his son. If he got better. If he lived. I think about that father and the beat-up truck he drove like a symbol of another life.

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Paul Guest is the author of four collections of poetry and a memoir. A Guggenheim Fellow and Whiting Award winner, he teaches in the Creative Writing program at the University of Virginia.

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.”

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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.

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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.

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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.