My Journey to Disability Advocacy

Chung Do Kim

On July 24th, 2018, I entered into an open room of the Center for American Progress, filled with disability advocates from the Washington, DC area. The room was equipped with a wheelchair accessible stage and Communication Access Real-time Translation (CART) captioning services. Here, members of the Disability Justice Initiative would work to bring the disability lens across progressive issues such as poverty, health care, the environment, and more by raising awareness to the specific vulnerabilities that disabled people face, and I had been invited to attend the launching of the Disability Justice Initiative at the Center for American Progress (CAP).

So how did I get here? At the heart of disability advocacy in Washington D.C.?

I am not disabled, nor do I have any personal ties to disability. However, I see having a disability as a type of minority identity, and what’s more, as a minority myself, I see disability through a minority lens; as an able-bodied Asian-American, one of the ways I can help the world become more inclusive is to promote disability rights so that the next generation will enjoy a more fruitful and accessible society.

The World Bank estimates that 15% of the world’s population experience some form of disability. That accounts for one billion people in the world, some of whom are likely to be family, friends, or neighbors. This means that ultimately, we will all experience disability at some point in our lives, whether it’s a sprained ankle, a chronic and lifelong condition, or something that develops over time, such as reduced mobility due to old age. While it’s impossible to plan for unanticipated disabilities, it is possible to plan a society that treats people with disabilities equitably.

So why not start now? Why don’t we consider accessibility in our social planning? Why don’t we orient our communities to be more inclusive?

When I was in elementary school, I always enjoyed the aspect of inclusive community building and including newcomers into a group. As an immigrant from south Korea growing up in the suburbs of Northern Virginia, I remember my first day of classes in second grade: here, I was accepted by an entire class of peers, all of whom were a conglomerate of different ethnicities, hair colors, and favorite colored popsicles. Maybe it was because I felt so accepted by my peers that I genuinely wanted to share acceptance and embrace others that were different than me.

When I was a junior in high school, I had the chance to practice this form of welcoming acceptance that I had received my first day of school in the States. I interned at a therapeutic recreation summer camp working with kids with disabilities through Fairfax County’s Neighborhood & Community Services.

On the first day of my summer internship, I found myself face-to-face with a room full of kids hell-bent on tearing apart the Dr. Seuss-themed room, “one fish” at a time, while buckets worth of finger paint splattered across tables and floors. I quickly ran to wipe the paint off the floors but let the kids continue playing with their new-found toys: fuzzy craft stems, blue cellophane, and giant tinsel garlands. I realized that it didn’t really matter what the kids used to participate in the classroom even if their method of accessibility into the class activity was attained by hand picking off the decorated walls. The construct of the room we envisioned wasn’t fit for some of the kids, and that was okay. The kids were actively engaged in accessing the activity, and we learned how to adjust for each individual.

That humid, sultry summer was filled with laughter, chaos, and most importantly, acceptance. The community of volunteers and teachers came together to create a lively, inclusive environment for kids with disabilities who may not have had a chance to interact with peers on a daily basis. I fell in love with the work, the kids, and the community of teachers and volunteers coming together to build an inclusive and accessible environment. The way we accommodated each individual in recreational activities, music therapy, and games allowed each camper to enjoy themselves to the fullest.

I continued to work at the summer camp for the next two years, cultivating my interests in learning about the wide range of disabilities.

Contrast this experience to my arrival at the Grounds of the University of Virginia. Here, I experienced a lack of accessibility on a more personal level. During my first week of classes, I tore my ACL, and found that the campus was not accommodating to my acquired disability. The more I used crutches on campus, the more I noticed physical barriers such as heavy doors, endless sets of stairs, and lack of accessible parking. My personal experience heightened my sense of awareness for the need to increase accessibility and foster community.

Before this injury, I never had surgery and I didn’t know what to expect; needless to say, I was nervous and a bit afraid. At the time, I wasn’t aware of how isolated my injury had made me feel. In fact, I had been struggling so much on my own that I had even planned to go to the UVA hospital alone. However, my friend texted me that night and asked if he could come with me to surgery at 7AM in the morning. I gladly said yes.

It wasn’t until after the surgery that I realized how much I needed someone there with me. It wasn’t until I had friends and family bringing dinner to my dorm night after night, when I couldn’t move, that I experienced the full power of community. It wasn’t until after this experience that I realized how crucial it is to empathize, support others in need, and be an ally to others and their experiences because, I have come to see that we really never know what someone else goes through.

Ever since my injury, I have been a disability advocate at UVA. I have tailored my studies to learn about the disability rights movement and disability in the workplace. From babysitting children with Autism Spectrum Disorder (ASD) in my free time, to researching about ASD through an independent study, I am always striving to learn more about disabilities so I can take part in creating an inclusive and accessible society for all.

Through my work as a disability advocate, I have come to believe that, as much as we can embody others’ experiences through compassion and consciously include all members in society, we can begin to create a world that benefits everyone.

Come back with me to that summer at the State Department this summer. Here, I attended a meeting with disability advocates from China and the Disability Action Group (DAG) that highlighted the variety and scope of diversity issues and activity in the foreign affairs agencies. While the DAG was sharing how the federal government works to include persons with disabilities in its recruitment process, I was fixated on the speaker using American Sign Language (ASL) which was being interpreted into English and then to Chinese and then back to ASL.  Not only was this incredible to see, but it also underlined three beliefs that have come to shape my life.

Inclusion is possible. I have experienced a wide array of situations where people with disabilities could have been kept to the margins, but more often there are many willing to stand up and actively include these people, particularly by increasing accessibility.

The United States is actively seeking to represent and include persons with disabilities in leadership roles. My summer working with disability advocates at the State Department is enough to illustrate this.

Three, other countries/societies should follow suit. Just as our government is working to break down the attitudinal and structural barriers in other countries by shaping foreign policy, we all should work towards making our societies inclusive and accessible for our families, friends, and neighbors.

Chung Do Kim is a fourth-year Global Development Studies major. He is involved on grounds as a Student Advisory Board Member for UVA’s Center for Global Health and is a former International Disability Rights Team intern at the State Department. 

Lessons from UVA’s “Grounds”

by Michelle Miles

The University of Virginia is known as an architectural wonder, home to Thomas Jefferson’s academical village––the iconic Rotunda presiding over all.

Three decades ago, however, a group of people were barred from entering this school’s landmark spaces. Three decades ago, these people wouldn’t have been welcome on this university’s buses, they wouldn’t have been welcome in the majority of its classrooms, or dorms, or cafeterias––and if they were, they probably would have been asked to use a separate entrance.

As a UVA student who belongs to this group of people, I grow more aware of the legacy of this invisibility every day. It was not until the American with Disabilities Act in 1990, when people with disabilities, like myself, began to matter, legally. Before this act, if we couldn’t climb stairs, navigate curbs, or open doors, well? That was considered our problem, not a problem with the architecture.

* * *

Before classes started during the fall of my second year, I met with Brown College’s director of studies in the Monroe House, since I was enrolled in a class there. He explained that before UVA was UVA, the house was home to America’s fifth president, James Monroe.

I grew up in Charlottesville. As a kid, I went on the annual class field trips to Monticello, playing in the gardens and learning about all of Jefferson’s various inventions. But it was never anything more to me than another old, brick building that I had to be well behaved in. Now, as I’ve grown more aware of the complicated context in which these buildings stand, I realize I’ve never felt quite as moved by a space as I did in that room of the Monroe House. I felt as though by just breathing the air I had somehow become connected to the historical moments that occurred in it, like I had entered some sort of time capsule.

The entrance to the reading room in Monroe House consists of two doors. There’s an outermost screen door which swings out, in the direction of whoever is entering the room. And then there’s a large, wooden door which swings in, toward the interior of the room.

I use a motorized wheelchair, which I control with one hand. This leaves me with one free hand––but two doors with only one free hand presented a bit of a challenge. My professor and I decided to put in a request for UVA to install an automatic door opener. Then, I could manage the screen door myself, or it could be propped open, and the inner door would open automatically at the push of a button. We were told that the opener would be put in around mid-October, no problem.

Until then, I timed my arrival to class each day to match when I knew our supervising professor would be standing outside enjoying the fall air. He would greet me warmly, and then open the doors for me––so this was the solution for the time being.

* * *

As much as I can go on about the challenges I’ve faced at the University—believe me, there are more than just a few doors that are not up to code—accessibility isn’t just a student issue. I met Sarah Cole at an advocacy meeting last semester. She is one of UVA’s Assistant Deans of the Echols Scholars program, as well as a professor of English. Like me, she also uses a motorized wheelchair. She kindly agreed to meet with me in her office in Monroe Hall, which, unlike Monroe House, was built in 1930. As a result, getting an automatic door opener installed was not difficult, since the building had been renovated after the ADA was passed.

While she praised the accommodations UVA has been able to make for her, she also spoke of a time before the automatic door opener in her office was installed, when she relied on fellow members of her department who “pitched in” to help her prop her door open. I, too, have felt fortunate to have experienced many “acts of goodwill” at the University. Whenever there’s a barrier, as long as it’s seen as “fixable,” UVA is beyond willing to address it, even going so far as to express their gratitude to me for pointing it out. After four years here, Professor Cole has found this true as well. But she turned my attention to something I hadn’t thought about.

Professor Cole told me stories of a number of times that she had given talks or been on panels at UVA, and how inaccessible the entrances to the stages had been, as opposed to the audience seating. Cole’s stories added to my growing understanding of space, and of how architecture itself greatly reveals many values that underlie our society. Values that determine who deserves to be represented.

But accessibility is not just about physical access. Even a building that is “accessible” can have a dehumanizing and hostile demeanor towards people with disabilities. Imagine an entrance, just for you, that’s tacked onto the side of a building, or in the back, out of sight and away from everybody else. Or an entrance that’s only possible for you to use with the assistance of a grumbling security guard that you must inconvenience to open it for you. These situations convey to a person that their presence is not expected, wanted, or worthwhile, and sometimes even physically prevents it. While this is inconvenient and perhaps embarrassing, the repetition of these scenarios eventually begin to convey to a person that they are not a welcome member of society.

* * *

Back at Brown College, at James Monroe’s old house, winter approached. The days grew colder and the semester grew busier, and my professor, my makeshift door-opener, disappeared. With no professor to hold a door for me and no electronic door opener yet, I devised a new plan: get there as early as possible so that I could navigate the doors myself, without anyone seeing, in case I struggled.

As I continued coming to class each week, I realized I no longer paid much attention to the history of the space that once had energized me. The awe it had once inspired, had vanished. The charm was hidden behind the anxiety I faced every day when my independence was threatened by those doors.

* * *

At a school like the University of Virginia, maintaining a purity of history and upholding the “Jeffersonian fabric” is a top priority. From the doorknobs on our classrooms, to how we refer to ourselves and our “grounds,” the tangibility of this historical fabric is everywhere. The university even selects its highest achieving and most involved students to live and learn in Jefferson’s original academical village––the Lawn.

To live on the Lawn is one of the University’s most prestigious honors. To my knowledge, a student in a wheelchair has never lived on the Lawn, which is not entirely surprising, considering that none of the 54 Lawn rooms are wheelchair accessible. I’ve personally never been inside of one.

Each tier of the Lawn is accessible by wheelchair from one side, along McCormick Road. However, right now it isn’t possible for a wheelchair user to travel between the tiers without exiting the Lawn, and then re-entering at the designated accessible entrance for that particular tier.

There’s currently an ongoing study evaluating ways in which the Lawn can be made more accessible, which I attended the kick-off meeting for. There, two external landscape architects, a few members of the Office of the Architect, and other interested parties, met to discuss making the three tiers more easily navigable by wheelchair. Though I had often had similar thoughts myself, the language used in this meeting made me aware of just how incompatible the spheres of historical preservation and universal accessibility are.

There was an enormous push to keep accessible routes “hidden,” to “minimize the visual impact” of universally compliant renovations, which were described as “invasive” and a “nightmare” to design. They were seen as impediments to preserving the Lawn’s “integrity.” As these words filled the room, I couldn’t help but apply them not only to the changes in the landscape that would accommodate people with mobility impairments, but the people themselves. I took these comments personally. I began to think of my presence in Monroe’s House just a few weeks prior to this meeting as invasive, a burden to the landscape.

* * *

I first met Brian Hogg at that kick-off meeting. Hogg is the University’s Senior Historic Preservation Planner, a career devoted to history and preserving the structures of the past.

Brian told me that the moment a building comes alive for him is when he sees the community engaging with it and actively using it. This happened recently with the completion of the Rotunda. He told me his philosophy, that, “if there are a few dents, and dings, and nicks here, that’s okay. That means people are using it… it can’t just sit here as the icon of the school, it needs to be part of the daily experience of the school.”

These were my thoughts exactly. So how can the desire for preservation coexist with the University’s desire to have those same spaces be living, breathing parts of everyday student life? Especially for students with specific mobility needs?

* * *

Back at the Monroe House, mid-October arrived, and my professor sat down to talk with me. He told me that the automatic door opener would require replacing the door knob on the door, and since it was an original door knob, they really wanted to avoid disturbing it. Also, the clunky metal system that would have to be implemented would detract from the room’s appearance. He asked if it was okay if we didn’t move forward with putting that mechanism into place. And I could understand that.

The more I thought about it, even hearing the click of my wheelchair’s brake fill the room felt invasive, and reconfiguring the entire door might be more embarrassing than me struggling to open it. Most old buildings like this one were not designed to accommodate wheelchairs, and retroactively imposing an accessible design would disturb the untouched nature of the history.

But do we want to leave history untouched?

In the Monroe House, the way that preservation was prioritized led me to feel that my ability to be present didn’t deserve the kind of disruption it would take to make the spaces around me accessible. My presence felt unnatural, because the building’s original design failed to account for me, and others with disabilities. Centuries of architecture have failed to account for me.

Though Thomas Jefferson was the father of this discriminatory architecture, he was also a pioneer. He was an inventor. When something didn’t function the way he thought it should, he set about trying to change it to make it work better, more effectively, and more universally. He was a proponent of change, and of creative solutions. If we, as students at the University of Virginia, are expected to follow in the path he’s laid before us, wouldn’t it make sense to challenge our surroundings, to reinvent the past that no longer represents who we are?

* * *

Michelle Miles is a fourth-year Global Development Studies and Studio Art double major, with a minor in English Literature. She is involved on grounds as a Miller Art Scholar and as the Editor-in-Chief of V Magazine.

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.

* * *

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.

* * *

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.   

* * *

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.

* * *
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.”

* * *

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.