No one has done more to make the University of Virginia welcoming to disabled people over the last six years than Dr. Marcus Martin, U.Va.’s Vice President and Chief Officer for Diversity and Equity. Now, as he approaches retirement at the end of 2018, I want to take a moment to recognize his extraordinary leadership. I admire and feel grateful to Dr. Martin for many reasons; here are three.
First, with many other pressing matters before him, from racial injustice to discrimination based on sexual orientation, Dr. Martin had the vision and commitment to include disability as part of his efforts to create an inclusive environment on Grounds. In 2013 he created a subcommittee of the Diversity Council dedicated to disability, opening the way to new progress. Before then, of course, many people at U.Va. worked to make the University more accessible and to draw notice to disability as an identity with social, cultural, and political significance. Still, overall disability often seemed a marginal concern. Suddenly having attention from a top-level, accomplished figure like Dr. Martin, whose office is in Madison Hall with the University president and provost, changed the climate. It made disability at U.Va. more visible and important.
Second, when it came to disabled people, he got it. This comprehension is no small thing. In my experience, many people struggle with the intricacies of disability, which makes them uncomfortable talking about it, and as a result, it often winds up being an afterthought in conversations about diversity. (As a late-deafened person, I certainly have wrestled with the concept myself: what do I have in common with someone who is blind?). Disability is a capacious and heterogeneous category. Some disabled people do not want a “cure,” while others do. Some do not experience any physical pain, but some do. Because anyone can become disabled at any moment, disability is porous. It covers a range of conditions that may be physical, sensory, or cognitive and apparent or not apparent. Despite such complexities, Dr. Martin showed a firm grasp of the two things that unite people with disabilities: their desire to have the same access as nondisabled people do, and their desire to feel welcome and comfortable in their own skin.
Third, Dr. Martin made things happen. He recruited 25 people from all over Grounds for the subcommittee, which eventually came to be called the Disability Advocacy and Action Committee (DAAC). Members included a professor of architecture and a staff member from facilities management, undergraduate and graduate students, a person from Athletics learning services, an association dean, staff from the Provost’s Office, other faculty and staff, and more. All members had a personal or professional interest in disability, but most had never had been in the same room together.
With Dr. Martin’s guidance, things quickly happened. DAAC members adopted a mission statement that begins, “The University of Virginia values disability within the spectrum of human diversity.” I cannot tell you how heartening it felt to have a University Vice President endorse a statement like that.
Other progress followed. The University’sAmerican With Disabilities Act Coordinator position changed from being 10% of a position to 100%. DAAC also clarified the procedures for faculty and staff to request accommodations and advocated the hiring of a hiring of a Coordinator of Academic Accessibility, a position in Provost’s Office. Among other accomplishments, this new hire has created an online clearinghouse for disability access matters. She also has managed to get the University to close caption its official online videos, making them accessible for the first time to deaf people like me.
In 2014, Dr. Martin threw the resources of DAAC and his office behind the first-ever disability studies symposium at U.Va., which featured select leading scholars from other places along with University faculty from a variety of departments and schools. The symposium has since become a biannual event, and in turn has led to a Disability Studies Initiative (DSI), a working group of ten faculty members committed to exploring the social and cultural aspects of disability from a variety of disciplinary perspectives. With funding from the Jefferson Trust, the DSI has become more established in recent years, with a goal of forming a minor or concentration in the future.
The DAAC also focused attention on disabled students’ experiences, reviewing such areas as residential life and study abroad. The Student Disability Access Center became more active and vital, experiencing exponential growth. Barbara Zunder, the director of SDAC, says that the center currently has 1,619 students registered, or 7% of the overall student population, which is close to what a typical four-year university would expect. (The National Center for Educational Statistics at the Department of Education reports that the overall percentage of college-age students seeking disability services is 11%).
Even the landscape is changing slightly. The University is installing two permanent ramps on Lawn, making the Lawn more accessible to wheelchair users.
These developments, and much more, have happened in a climate created by Dr. Martin. He inspires people to work hard and get things done.
I have learned much about leadership from Dr. Martin. With a wide variety of people, from students to community members to administrative leaders, he has the rare ability to connect with others and make them each feel understood and appreciated. He has taken the time personally to attend disability events in the evenings. Even as he takes on an ever-expanding portfolio, he never seems stressed and keeps his humor, a skill he doubtless put to good use as an emergency room doctor years ago. He has been showered with accolades for good reason. His many achievements on behalf of disabled people also deserve praise. Equally important, he has shown the way forward; as he would probably be quick to say, all change lies within each of us.
Thanks, Dr. Martin, for all you have done.
Christopher Krentz is an associate professor with a joint appointment between the English Department and the American Sign Language Program. He is also co-director of the University’s Disability Studies Initiative.
This past summer, I was blessed with the opportunity to take over as the new Disability Studies Initiative Graduate coordinator at the University of Virginia. In my first few months on the job, I have been impressed and moved by the high level of active and empowered citizenship flourishing throughout the U. Va. Community. From the interdisciplinary and administrative Disability and Advocacy Action Committee to student organizations, classes, and clubs, people at U. Va. Are seriously driven in working towards creating a more equitable and inclusive college campus.
For this month’s blog post, I thought we would do something a little different. Recently, I was given the chance to sit down with four able-bodied, but disability-allied students to discuss their experience in working with the disabled community. I recorded that conversation and included it here.
In the style of the podcast “Beautiful Stories with Anonymous People,” what follows is a roughly 30-minute, casual conversation recorded in both audio and textual formats, where we discuss such topics as activism at U. Va., specific project goals, community demographics, and the experience of being an able-bodied ally to the disabled community.
For the sake of anonymity, I have changed each student’s name. Any editing done in the transcript is for the purpose of clarity only.
Please keep the conversation alive.
Interviewer: I am here today with four students at the University of Virginia, Mark, Tori, Michelle, and Andi. Mark, Tori, and Michelle are all a part of the Batten Class “From Inequality to Action,” where they are planning projects that focus on fostering greater levels of accessibility for disabled people on U. Va.’s campus. Andi is a member of the Student Council Buildings and Grounds Committee and is here to discuss her specific goal of making one of the rooms on the Historic Lawn compliant with the Americans with Disabilities Act. All four students are able-bodied, but disability allied people.
Why don’t we begin our conversation by discussing your specific projects?
Mark: This is only a semester-long class, and so some of the potential solutions that we are seeking in regards to this problem of accessibility at U. Va. are going to be sort of long-term—more time and greater financial investments. Because the ultimate goal of this class is, by the end of the semester, to have some sort of actionable solution to implement. So, we are trying to balance being able to produce something, finding a solution that is feasible that we can complete in that time frame that is actually helpful to the disability community, while still having that sort of long view of “what sort of lasting impact could we potentially have on the University?” Also, could we partner with other allies, past just this semester?
Interviewer: Alright, so you are thinking longevity—how to keep this going and having like specific, deliverables, a goal to hit. Is that how both of you understand?
Tori and Michelle: Yes
Tori: Yes, I went and talked to my professor about this after the DAAC meeting on Friday. Basically, I asked, whether this [project] could be something where we lay the framework for a much more long-term project. We definitely don’t want it to be the case where we are just sort of coming and going out and not seeing any kind of result, especially because we’re allies and not actually a part of the disabled community, and so we don’t want to just come in and then not stay to feel the after-effects of whatever we do. We don’t want to do a half-done job that doesn’t benefit anyone.
Interviewer: And you mentioned Andi, at the meeting, that you had a goal of—well why don’t you explain to me what your goal was exactly.
Andi: I got inspired by my TA last semester, and I had this idea—well, I was kind of frustrated with the University last year for a couple of reasons. I was a first year, so, I was just finding my ground, and I was like, “What can I do to make a change?” And then I saw the email about applying to student council committees, and I said, “This is something I want to do,” and I applied to one of them and, my committee head said that we should have a personal project. So, I interviewed with this specific personal project, where I was like, “I want to make a lawn room ADA compliant—at least one, while I am here—so, it has kind of just worked out really well, and I’ve taken that [the Lawn Room project] as my personal project within my committee. But it’s definitely something that I’ll be able to work on, since I am only a second year, the next two and a half years that I am here. But yeah, my end goal is to make at least one room ADA compliant, because we should want to be able to say, “We have this room ready for you,” not, “oh, we can change for you.” It’s just such an honor to live on the Lawn, and it blew my mind that doing so wasn’t accessible yet, and it wasn’t even accessible for some disabled people to go onto the Lawn until this year.
Mark: So, I think her project [Andi’s] fits pretty well with the sort of broader view of what our project is. We are exploring how the physical barriers on Grounds create these symbolic obstacles that prevent students, faculty, whomever, from fully engaging in the U. Va. experience. Living on the Lawn is one of those sorts of renowned, well-known parts of the U. VA. experience, or at least a goal that a lot of U. Va. students shoot for. As students, how can we help other students who could potentially serve as allies, be more aware of the needs of the disability community? One thing we have looked at is CIO’s planning of events—who are those CIO’s open to? Let’s make a very tangible checklist of steps, like “here are steps that you should consider, as a resource, for whenever you plan events.”
Tori: An interesting thing that we found was this: because the university tries to fulfill the requirements of the ADA, and stuff like that, in most respects, I mean besides the Lawn room—and there are other ongoing projects—and that’s [the Lawn Room] ongoing. There are people working on that. We talked to a few people and they mentioned how much behind the scenes work is going on, especially with the physical aspects. So, I think one of the things that struck me a lot was that it [creating change] is about mindset, and students—allied students, or just students in general—to be aware of these things [inequity in accessibility]. Because, if it [inequity] is not something that you think about each day, then—we didn’t think of this kind of stuff before we started this project, and now it’s something that we consider more. With the CIO checklist, I think that’s a way for organizations to fill the gap between the physical barriers and more abstract decisions being made on campus regarding the disability community.
Interviewer: I have just a few questions for you then. And the first has to do with engagement. I came from an Undergraduate career at a university where the student body was really not very engaged— even socially. So maybe, I could just get each of your perspectives on what civic life is like as a student at U. Va. Because I know that U. Va. really pushes empowered citizenship. Do you feel as though that is something that actually occurs here?
Andi: I guess for me, U. Va. lays out all of these formats for becoming empowered citizens, and pushes us to do all these cool things, like stand up for ourselves and make changes for ourselves, and if you’re the type of person to do that, you have all the room here to do that, and it’s so awesome. But, if you’re the type of person to not care about that, then that’s it, you’re never going to experience that part of university life. But I think that what’s cool about U. Va. is that there are a lot of people who do care about making positive changes and improving the University, and the rest of the world. I have a lot of friends who are “pre-commerce,” they want to be in the commerce school [McIntire School of Commerce], and that doesn’t necessarily have that same explicit humanities “trying to change the world focus.” But, all of my pre-com. friends, they go out and civically engage—they try to get people to vote. So, there are outlets for everyone to use their voice. It’s just whether or not they want to.
I guess, for me, I don’t necessarily notice this engagement every day. I’m not explicitly saying that “Oh that’s a student making a difference,” or “Oh, that’s how it should be,” because people do get engaged here, and that’s what the University has done.
Mark: I think that I would agree. The U. Va. stereotype is like a “rich, white kid,” and I think there obviously is some validity to that, but I would agree with your point [Andi] that whether it’s obvious or not, the idea of “student self-governance” is a real thing if you want it to be. I think we need to be cautious though: at some points, there’s almost a fallacy of student self-governance, in which there are limits on what students can actually accomplish, so that the University, maybe will say, “Oh, look at how empowered our students are!” When, in reality, they are still putting restraints on how much students can actually get done. I don’t know, you [Michelle] are in student council, maybe you can talk a little more about how successful you have been.
Tori: Yeah, I guess it’s complicated. And I have to preface this remark by saying I can’t speak from my position—or from my role on student council. But, I have mixed feelings about it [student self-governance], I suppose, but I will back what the other two [Michelle and Mark] have said. I think that the student council does a lot of really cool stuff. I think we are trusted within what is reasonable. Because U. Va. is such a large school, and there is so much to run and manage, there are a lot of things you have to do to get a policy in place—and generally, I have always felt “heard” here, [I have always felt] responded to. But I know there are definitely inequities in the University and I am obviously speaking from a place of privilege.
Michelle: I think it’s interesting— a recent example [of some of the inequity going on at the University] is the proposal that was set out by the Latino Student Youth Work Group. And, one of their requests was asking for guides to be able to get tours in different languages. So, the guide service wanted to support that but they you know, can’t be political and, there’s this huge internal debate—-like she [Tori] just said, I can’t be speaking from any official position—so there are limitations, and I think that reflects how the University is run. We always want to look like we are doing the right thing. Sometimes, that makes them reactive [the University] but sometimes they also want to quiet things down a little bit. There are a couple of examples that I know of, professors doing things inappropriately, and the University wants to quiet that sort of thing down as much as possible. Because, we [as a University] want to look good, and sell ourselves. So, I think that’s definitely been an issue. But I also think that because the status quo here is pretty comfortable for a lot of people, you don’t see as much allied student activism—it really falls on the students in the tough positions. So, I think certain students do speak out, but only as a result of their situations becoming, perhaps, unbearable for any longer.
Interviewer: On that note then, how do you see that same sort of dynamic playing out with the Disability Community here? Has there been more success with getting voices heard in that community?
Tori: I have been surprised by the extent of the resources here. Again, I’m not actually a part of the community, but from a perspective like the DAAC, and different administrators who have been more than happy to talk to us about our projects and stuff like that—I have been surprised by the interest…it sounds to us like the most pushback comes from, actually, alumni. We mentioned this at the DAAC meeting, but when we talked to an important contact about accessibility to the Lawn, we were told that when they started to build the ramps on the lawn, there was some pushback from alumni.
Interviewer: From much older alumni?
Tori: He didn’t specify.
Andi: But probably
Tori: But it was about the aesthetic of the Lawn. So, I think that the University is constantly trying to cater to those two sides [history and progress], and I think sometimes it might feel like they [The University] are not as progressive as they could be because of this [balancing of history and progress]. But, I think that the image that the consciousness to the University’s [historical aesthetic] image could be leveraged for this kind of a project [for ADA compliance on the Lawn] because, you know, the University wants to be seen as a school that’s accepting of minority populations, an aesthetic issue in and of itself.
Andi: And U. Va. is a public university, so a lot of the extra funding that the University utilizes for other things, is coming from alumni. And, I think this has an effect on how much the University is willing to push alumni’s buttons. I think at the higher levels [of administration] it gets kind of political and even with my project [for ADA Lawn compliance] people have said to me “you need to frame this politically, or you’re not going to get anything done.” I have had multiple people tell that to me.
Interviewer: So, they are telling you up front that you have to play the political game?
Andi: Yes, exactly.
Mark: I would just add a little, in terms of how U. Va. prefers things to be a little bit quieter…and having very obvious renovations happening on the Lawn, especially for big events like Ryan’s inauguration, is the opposite of having things quiet.
So, I think the disability community, in terms of other forms of inequity that are more in your face, like race, or socioeconomic status, or gender—a lot of people just don’t think about the disability community at all, and it then becomes something you have to approach from a different angle than maybe you would trying to address other forms of corruption or inequity. There’s an extra push you have to make to get people to really care about it [disabilities].
Interviewer: [Tori and Mark], you mentioned this balancing between preserving the history and, also, progress. Would you say that that’s a tension you see a lot here at the University?
Michelle: We thought it would be more of an issue than it was because they [the University] are addressing it [disability needs] in a lot of ways, they do have to meet the ADA requirements. However, when we talked to Mr. Hogg, he did voice some issues; because they [the University] want to maintain the beauty of the building, sometimes that makes it so like, “this ramp needs to be hidden,” or, “we don’t like how this would look because it would ruin the look of the building.” So, that came up as an issue in discussions…and also, it’s kind of an issue for the Lawn because when they are replacing each brick, they do calculations: “Well this if [this project will cost] $5 per brick, [this project might not be worth the cost] of meeting this [historical] brick look.” I mean, yes that’s definitely an issue. You want to make changes in a proper way that will preserve how things look because our architecture is notable. But I don’t think it’s really a thing where someone says, “We can’t do this,” rather, it becomes an issue of “How are we going to do this so that it hides this, or fits in nicely to the new design.”
Interviewer: I see. So, you see the administration—perhaps the grounds crew, or the historic preservation, as not so much halting progress, but more like, “it has to be done the right way,” which puts up a lot of red tapes.
Mark: One thing that Brian Hogg said, was that, when it came to implementing the Lawn ramps, they had originally devised this idea 15 years ago, but for the longest time, they didn’t make any progress on it, because—and this is how he phrased it—they just didn’t believe it was possible that they could get it done. And that relates to what you [Michelle] were saying. This is not a situation where maybe they [the administration] are like “No. We are sticking 100% with the history of this building.” But, maybe there’s that reluctance or lack of a full motivation or effort to come up with a creative solution. So, it’s not a full pushing against progress. Progress is much more deliberate.
Interviewer: So, what does that do then, for people in your position: allies, or people in a class that’s perhaps only a semester long. This is sort of the issue you all brought to me at the beginning. If progress is going to happen slowly, how do you keep students actively engaged—allies actively engaged—in helping.
Mark: I think there are two ways to look at this issue. There’s one, which is just physical infrastructure and how we are going to change it through construction or renovation. And then, the other side of this is just about changing people’s mindset regarding disability and accommodation—you know, making it a “muscle-memory” sort of thing, of like “I’m always going to consider the potential accommodation that we should have events when planning stuff.” And maybe that’s sort of the side that, within the semester, we have targeted more. While, in the long view, maybe we look towards supporting [Andi] in her quest to get these physical renovations done: it’s [about] attacking the issue from two different sides.
Michelle: Also, a thing that we have been doing is reaching out to different organizations to be like “have you guys considered this [issues of accessibility]?” And, voiced by some of the students we have talked to who might not be able-bodied, they talked about social life and doing things on the corner, or Greek life, and stuff like that. So, we have been reaching out to some members of that community just to say, “is this [access for disabled people] something you’ve considered?” And I think that their thinking and response to that is just helpful. Now it’s like “Okay, someone is thinking about and noticing this [disability needs].”
I got an email back from somebody and they were like “oh we thought about a Greek life member needing accessibility to things, but we never thought specifically about people wanting to come [but not feeling represented adequately in the selection of venues] to events that we put on because a lot of events do happen in this realm [with limited access].” So, I think advocacy and raising awareness goes a long way in making our projects continue because getting as many people to think about these issues as possible will lead to changes in other areas, where it’s not just us saying “you [clubs] need to change this,” they need to work on this in their own clubs.
Mark: Yes, and I think this [sort of approach] will broaden your collation in terms of finding supporters to then back the more long-term investments, and raise motivation to keep up a sort of sustained pressure on the University towards making a change.
Michelle: And it doesn’t even have to be pressure on the University, it can just be people and clubs putting pressure on themselves. Because that’s the thing: the gray area between the University and what they have done, and then students, stuff we control—that gray area where the University doesn’t have control, it’s on us to [take control].
Interviewer: There are two avenues of questioning that I wanted to address; let me see if I can sort of tie them together. The first thing that I am thinking about: As able-bodied people, what do you see as the most pressing issue for disability advocacy at the University? I think for you [Andi], it’s the Lawn rooms perhaps? But, maybe it’s accessibility more broadly? Would you say that’s true? That accessibility as a general concept is the most pressing issue?
Andi: I would say that inclusivity— getting everyone into our student body—because like, Mark said, U. Va. is seen to be, white rich kids, and I think, now more than ever, there’s a really big push for all levels of socioeconomic status, and race, and all levels of ability to be included into our community. For me, the Lawn is a symbol of that because that is the center of our University. That is the first thing you saw when you go on a tour—they take you to the Lawn. If a student who is not able-bodied wants to tour our university, up until now, they couldn’t even go up onto the Lawn with the same tour group that they would have gone with before—it would have to be a different experience—and that to me doesn’t sound like inclusivity. I understand that there are some challenges that people will always have to face, but I guess the biggest issue is inclusivity, and accessibility is a huge part of that inclusivity. Because people with certain disabilities can’t live on the Lawn, they are not included in that honor of the student body.
Mark: Yeah, I guess [the biggest issue is] accessibility in terms of being able to access everything that U. VA. has to offer. Whether that’s simply being able to study in a certain academic space that you wouldn’t be able to otherwise unless an accommodation was made, or something like living on the Lawn. Your ability shouldn’t define your U. Va. experience in any way; you [as a disabled person] should have the same access to resources to opportunities that any [able-bodied] student would, that’s how I view it.
Tori: I guess [the biggest issue is] just making other people keep it [disability] more in mind. I think that the University has really good resources for students who are part of the disabled community—they could be doing more to create more awareness within the student body, generally.
Interviewer: So, increasing visibility as a whole, at the University?
Michelle: Yeah, I agree with everyone else. Personally, I feel like, if it [a service, program, tool, space, etc.] doesn’t have a use for everybody in a University, then I don’t see the value of it. If it’s just a Lawn that Jefferson built—I don’t like him very much anyway—that doesn’t really have a [use]-value. And if we are creating this hierarchy where those people who live there [on the Lawn] are supposedly the best of the best, and a certain portion of the population can’t even access it or live there, then I don’t see any value in that hierarchy, and I don’t see any value in that physical structure.
Interviewer: Right, that makes a lot of sense. I wonder if you have any thoughts about the relationship between U. Va.’s disabled community and Charlottesville’s disabled community more broadly? Do you see any gaps, divides?
Mark: I don’t think that’s something we have really considered. I think that the greatest extent to which we’ve seen an interaction between students and outsiders is just something with the Lawn ramps, where it’s a situation that obviously effects or benefits students with disabilities, but it will also benefit elderly people or people who will come and have strollers, and sort of situations in which renovating a building or a structure that particularly helps individuals with disabilities also just has benefits for people at large. But beyond that, I don’t think we have really explored that connection.
Andi: I, through another one of my classes, have looked into the relationship between the Charlottesville community and the University in general, not necessarily the relationship between the disabled communities. But, I also don’t think that our demographic reflects the Charlottesville community demographics, at all. I think that U. Va. has a lot fewer disabled students then the Charlottesville community has because this is a hard place for someone to get around and to feel welcome [from an architectural perspective]. And so, I just think that fewer students who are physically disabled would consider coming here, thus lowering our demographic [diversity].
Mark: I think statistically, it’s like 10% of the U.S. population has a disability, and 8% of college students, but only 5% of U. Va. students have a disability; but that includes learning disabilities and a broad range [of other disabilities].
Andi: But that also reflects in U. Va.’s having a hard time with race and socioeconomic status.
Interviewer: Just based on your personal perceptions, would you say that the U. Va. community is more homogeneous than the Charlottesville community.
Michelle: It depends on what particular neighborhood you’re in.
Interviewer: Yeah, I guess that’s true. If you go on the edges of Charlottesville, it’s a lot different than if you go closer to the University.
Ok. One more line of questioning—and we have already talked about this a little bit. Could you each say something more broadly about your experience as able-bodied people working with disabled people? Has this been a difficult thing to navigate? Has there been something you have learned about yourselves from interacting with a community whose needs are different than your own?
Andi: I actually receive accommodations—I have a series of unique learning disorders and I don’t often share that, I don’t often publicize that very often—but I guess, for me, I don’t really view it as an “us and them” sort of thing. For me, I guess I did learn a lot more about myself because I have a new perspective on my own accommodations, and how small they seem compared to these accommodations that we are looking at on a bigger, broader level. What was the second part of your question?
Interviewer: What have you learned about interacting, interfacing between—you said it’s not an “us and them” situation, but…
Andi: Yeah, right! But also, I have learned that because it’s not an “us and them” situation, you don’t need to feel awkward about being naive, because people are so willing to explain something to you, especially if it controls so much of their life. And I found that everyone has welcomed me with open arms, and shared so many interesting and personal things that I would never [necessarily] expect them to share with me. That’s what makes it not “us and them,” because, they’re just so willing to be supportive and open about the struggles they [disabled people] have.
Tori: There’s so much to do to be more aware of the disability community here, besides just the physical [barriers], or the extra work that must be done, like remembering to ask first if they [clubs] will need accommodations before planning events.
Mark: Yeah, I just will echo what Andi was saying: these aren’t necessarily conversations that we need to shy away from and that maybe the first time you interact with someone, you might offend them, but as long as you are aware of your privileges, and that you learn from your mistakes—you know, if you continue to dance around this issue and never address it, it’s never going to get solved. And going into a situation where you understand it affects other people, and then become more aware, better understand the issue at hand, then that enables you to be a better ally in the future.
Interviewer: So, it’s a certain level of being self-aware of your own ignorance?
Mark: Yeah. And when someone corrects you, or whatever might happen, don’t take that as a personal attack, rather just be like, “hey, this is something I have never thought about before, this conversation, now I should be more aware of it in the future.”
Interviewer: Anything you [Michelle] would like to add?
Michelle: Last year I was interning with a professor who was working on an accessibility app, and because she had struggled with typing—I am also a terrible typer, and I can’t spell anything—we made an interesting team. But, we were both able to complement each other, because she had certain skills that I didn’t have, but I think it was nice just to show we each had our own values and things that we weren’t able to do. And to work in that manner, getting to know someone on the personal level and build a friendship, I think helps dispel a lot of misconceptions that people might have [with being an ally to the disabled/minority community]. I think the more you befriend and remain open to anybody and allow them to access spaces that you’re in, or go to spaces that might be more accessible, that helps to broaden your mind and make you more considerate about the world.
Mark: I would add too, that [disabled] people aren’t really asking for sympathy, they’re just asking to have access to the same opportunities that anyone else has. You don’t necessarily need to treat them with “kid gloves,” you can have these open conversations and figure out what the best solution for everyone is so that they can have the same access to the resources that everyone else has.
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.
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.
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.
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.
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.
“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:
Disabled people had families – large ones at that. They married, had children, grew old, and functioned as independent heads of household despite their impairments.
Disabled people actively protested institutionalization. They complained that the institution was more expensive than outpatient aid (and they were absolutely correct).
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.
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.
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.
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.