I trudge up the stairs
to my humble apartment in Harlem, barely surviving a long first week of classes
at a campus foreign to me compared to The Grounds I knew so well. Slowly losing
pace with each flight, I reach the top floor, hearing my celebratory sigh echo
down below. I pause for a moment thinking about what it would have been like
for my late father to visit me in the city.
As I continue to mourn
his passing in April, every staircase I encounter in New York City reminds me
of my father’s journey with disability.
In 2005, a
work-related accident altered two of his spinal disks, severely impairing his
nervous system, and ultimately changing our lives forever. After a month of
anxious hospital visits with my mother and siblings, the first time I began to question
accessibility in design was his return home. In helping my father up stairs,
open doors, and sometimes even scout out an alternative, more accessible path
altogether, we confronted the barriers of the built environment. From these
seemingly small gestures between a parent and child, arose the initial reason
why I decided to follow the path of an architect. While applying to graduate
programs in December 2020, I actually spent some time looking through my old
transfer application to UVA, surprised by my eagerness to help him and those
who also received the shorter end of architecture in my essay.
Asking myself where did all that enthusiasm go, I reflected upon my last three years of undergrad. Surprisingly enough, accessibility was a topic normally avoided in most of my course work, and whenever addressed I would be told by critics, “Not to worry too much about fitting difficult realities into unbuilt designs” or “Refer to the ADA guidelines if you are that earnest about it.”
The only time I as a student was asked to put accessibility at the forefront of my work, was during my final semester by Garnette Cadogan, The School of Architecture’s 2020-2021 Porter Visiting Professor’s (currently, the Tunney Lee Distinguished Lecturer in Urbanism at MIT School of Architecture + Planning) seminar “Reimagining Public Spaces: Making Room for Others.” The course challenged me and my classmates to approach public space with a greater creativity and deeper understanding towards concern for the rich humanity of the varied people in shared spaces, to create public spaces with greater sophistication, to develop and employ a more thoughtful design philosophy, to be alert to what constitutes a just city, and be motivated to actively work to understand public spaces by patiently and respectfully listening to the multiple publics that use—or avoid—them.
During his course, we even had the honor and privilege of conversing with Sara Hendren, artist and design researcher at the Olin College of Engineering in Needham, Massachusetts, who also has a son with Down Syndrome. Before our discussion, Cadogan introduced us to her book What Can a Body Do?: How We Meet the Built World where she asks readers to question the things and spaces we interact with or to better imagine the collective desires and needs of the human body when living in the world.
Below is an excerpt from her book that we read for class, but more importantly what resonated with me as a designer the most.
“But disability is not
a fixed or permanent label that belongs only to some people; it arrives for
each of us. Short-term injury and long-term illness, changes in our perception
and mobility (and the perceptions of others about us), the chronic misfires
that happen in our emotional makeup—if it’s not a reality in your life now,
it’s sure to be so in some form, in your own body or among those who share your
intimate life. Disability gathers a dimensional we like nothing else, because
disability is no more and no less than human needfulness, both personal and
political. That’s why the we that ties together this book is as tenuous as it
is important: the collective that arises in the form of shared bodily
vulnerability, the ways our physicality and our thriving are tied.
So often, of course, the first person plural is a falsehood: Who is this we, a word mostly used to blithely generalize from one person’s limited experience in a myopic way? Our distinctions and specificities are important. But for disability and design in this book, the we is both real and profound. It’s not that all our bodies are the same. It’s that the stakes for life together are universally shared by the misfit states that come for every body. We find ourselves in need of assistance—some of it from the forms of the designed world (or, as these stories show, the redesigned world), and some from one another, body to world and back. But getting help? That’s for my son, Graham, but it’s also for me and for you, for all of us. Not everyone should call themselves disabled, but everyone should recognize that both giving and receiving assistance are actions we will each take up in turn, every one of us. Human needfulness really is universal. We—and I do mean we—might choose to let tools for assistance be visible and unifying.”
Just as I have recently taken a significant step forward in my architecture studies, disciplines both within and outside the realm of the built environment have begun—and I only say begun because there certainly remains a long way to go—as well.
So whenever I see that an architecture school has or is looking for a new administrator dedicated to matters of “Diversity,” “Equity” and or “Inclusivity,” I can only hope that they are cognizant of their intersections with accessibility. Or will schools just have to invent yet another role for that purpose? In self-critical efforts, I finish this piece as an attestation to my re-found commitment as a designer to work towards a more accessible, inclusive, and equitable built environment. I only hope you join me in learning a little bit more about even the subtlest of design decisions that would either make or break my dad’s day. I recommend you start with Sara Hendren’s book!
Omer Gorashi is a Sudanese American, designer and urban photographer (@soozysufi on IG and @omer___go on Twitter). He currently pursues his Master’s of Architecture at Columbia University Graduate School of Architecture Preservation and Planning, upon graduating from the UVA School of Architecture (BSArch ’21). At UVA, his design coursework questioned how interventions within the built environment can improve the human condition, socially and culturally, as well as physiologically, mentally and emotionally here and abroad. He has worked at Leers Weinzapfel Architects in Boston, with UVA’s in-house Design Group where he assisted with the recent renovation of the A-School’s FabLab and LOT-EK in New York City. Outside of architecture, he volunteers with several non-profits, such as Islamic Relief USA and Pious Projects of America, serving Muslim communities worldwide.
Laura Kniaz Knox was one of the student leaders who was integral in the implementation of the Americans with Disabilities Act at UVa. Ashley Heuser, the DSI’s student administrator interviewed Laura about the Disability Rights Movement on Grounds.
Ashley: Laura, thank you so much for agreeing to talk to me.
Laura: My pleasure!
Ashley: I am very interested in your contributions to the
disability rights movement at UVa in ’89 and ’90. I believe you graduated in
Laura: Yes, I did, in May of ’90.
Ashley: I really want to create this narrative talking about
how disability has come up around Grounds and how students have, historically,
perceived of disability. When I started to research into the ADA, I noticed
that your name kept coming up in The
Cavalier Daily articles. I really wanted to get your perspective on that.
Laura: Okay, so You have to remember this was a long time ago.
Laura: I’ve got children your age
Laura: I started a group called Independence for Students
with Disabilities on campus. I and a couple of other people on Grounds had
noticed that there were physical accessibility issues that we were concerned
about and explored a little bit in addition to some of the other accessibility
issues. I mean, probably when I was
younger, when I did most of my activism, I was more aware of the physical
disability issues. Though, as I have gotten older I have certainly become more
aware of some of the other things. I can’t speak to how UVA did those [things,
but] I can tell you things like curb cuts and physical access to buildings and
things like that. We had done a big survey back in the 80’s about how high lips
were and where there were ramps and where there weren’t. We had done a booklet
about it. I don’t have a copy anymore, but we had gone through everywhere and
measured things. It’s a historic area, obviously, but the fact is historic or
not, we felt like all people deserved physical access to Grounds. So that’s
what we spent a lot of our time working on and trying to do advocacy in that
Ashley: Could you talk little bit about the origin of that?
From what I understand, Disability Rights as a movement at UVA really started
after the death of Franz Stillfried. If you feel comfortable, would you be
willing to elaborate more on that?
Laura: I don’t know anything about that. I had gotten
involved because several of my siblings had more hidden disabilities and I used
to date a guy who used a wheelchair, and he had physical accessibility issues.
That just made me more aware of the issue in general. One of my siblings had
had some discrimination based on his disability and I had done some legal
research for my mom and advocacy in that area. I approached it more from that
angle, my personal background.
Ashley: Could you talk a little bit more about how either
you or the students you were involved with thought about what you were doing?
Did you think it was necessarily connected to the Disability Rights Movement at
the time or was this a university specific phenomenon?
Laura: I, personally, was very interested in disability rights as one of the civil rights movements. It was a civil rights issue. Jason Lopez was the person who worked closest with me on the committee. I think he felt about it similarly. The fact is- think globally act locally- we figured we weren’t going to change the world completely while we full time students. But we felt like we could make an impact at UVa. That is where we focused our energy on even though we were interested in the disability rights movement more as a whole. After undergrad, I worked for about two years and then I went on to law school and I became a special education attorney for a little bit. I also did a legal clinic during law school where we worked with students who had equal access to school under the IDEA and Section 504. I looked at it as a civil rights movement and as an equal rights movement. The administration probably looked at us as pests, [that] is my guess. I think sometimes university administration has lots of priorities and lots of interest. While they may be generally well meaning, lots of equal access issues have costs tied to them so I think that probably wasn’t the university’s priority even though it was ours at the time.
Ashley: Did you think that the administration did things to
support you, you meaning the committee or the group, or did you feel like there
was any resistance?
Laura: The stuff we were doing, measuring curb cuts, talking
about where doors should be widened, where elevators should be put in, that’s
really not something that a student should be doing, that is something that
should have come from the university. I wasn’t trained to measure slope and
those kinds of things. Those are really something that they should have been
looking at as an institution if they wanted to provide equal access. When we
had done all of that, all the measuring and that kind of stuff, they didn’t
really inhibit us in any way, but they weren’t really cheering us on and they
weren’t pouring lots of financial resources into it when we were doing it all.
My guess, and I don’t know for sure, but my guess is that they were hoping that
we wouldn’t get a lot of traction and we would ultimately graduate and go away.
But with the pamphlet we did print it out and we had meetings with the
administration [and we talked about] things that we thought should be done and
what some priorities were. But then ultimately, I graduated and I am not sure
where everything went after that. I haven’t been back to UVa since I graduated
so I don’t know how the physical accessibility is now. I am guessing it is
(Ashley and Laura laugh)
Ashley: We do have ramps on the Lawn now.
Laura: That’s good! When we were there, there were some lifts
that didn’t always work and elevators didn’t always work. There were certainly
not sufficient curb cuts and there were definitely really basic [things]: there
weren’t accessible bathrooms and student shouldn’t have to go to a different
building to use the bathroom.
Ashley: Yeah, when I was reading over the report, because
Vice President Lampkin gave me the report that you all worked on-
Laura: Oh did she! It’s great that it’s still out there!
Ashley: Yeah! And it was really interesting because as I was
going through it, in almost every single building you all broke it down by what
is the easiest, what is the cheapest, what is the most costly, [and] what is
most labor intensive. And I found it interesting that the number one cheapest
thing was “take the table out of the handicapped bathroom.” And I’m like, “why
was there a table there and why was it in every single building, every single
stall? Who does this, who puts a table there?!”
Laura laughs: The whole mindset there wasn’t set up to
provide equal access. I think people were probably a little more ignorant in
general than they are now. The things that people of your generation find to be
very common sense, like mental health awareness and sexual preference, and all
those types things, those were a lot more radical in the eighties. I mean, it’s
not like it was the fifties, but it was just a different day and age and their
natural instinct wasn’t to make things as physically accessible. And I’m
guessing also to make things more accessible for kids with ADHD or learning
issues or that kind of stuff. We had a Disability Services Center but I
remember they provided- and I volunteered sometimes- reading books and they
were on tape, but there really weren’t a lot of the resources that are sort of
expected now. People didn’t think about [accommodations] as frequently or
readily and I think the way that they thought about them at the time is that
they were more doing somebody a favor instead of providing somebody with what
should be their basic fundamental rights to have equal access.
Ashley: Could you talk a little bit about the perceptions
that the student body in general had about the committee, about the work you
were doing? Were they supportive, did you get the buy in?
Laura: We were a small, active group. Jason and I did a ton
and we had some other people who helped but were really did a lot of the work
ourselves. I think sometimes students- you know everyone is busy. They are
worried about their classes and they are worried about their boyfriend, and
stuff that immediately affects them. I don’t think anybody was opposed to the
work we were doing and they were certainly willing to cover us in the student
newspaper. But I don’t think it drove and motivated people for the most part as
it did us. You have to remember that there weren’t a ton of people with
physical disabilities on the campus, probably because it was so physically
inaccessible. We weren’t having five hundred-person demonstrations or anything
like that. If I recall, and I’m not one hundred percent sure because it’s been
some time, but we may have had some kids form Key Club that helped with some of
the measuring. Kids who were a little more service minded helped us out because
it was a big campus and there were lots of things to look at so we definitely
needed some help. But I wouldn’t say there was a ground swell of people helping
us. It was me and Jason for the most part rattling a lot of cages.
Ashley: Other than the Accessibility Report that your
committee produced, do you think that there were other changes to the culture
on Grounds? Is there a legacy that you all left behind that I may not be able
to dig up in archives?
Laura: I think we raised awareness. Unless disability
touches someone directly- people think about things from their world view and
not in the world view for somebody that, for whatever reason, sees the world
differently. I think we raised awareness in that area and I think we got the
administration talking about more what sort of changes need to be done. I can’t
tell you the pace in which any of those changes took place because I graduated.
But I think that we raised awareness about all of that, I think that is
probably my legacy and documenting some of the problems. Before then, to my
knowledge, there were issues but nobody had ever tried to do any sort of
systemic assessment of what worked there because I guess they felt like they
didn’t need to. I think this made them have to be more accountable.
Ashley: You mentioned before the work and the manpower that
you and Jason put into this and how you’re students trying to do this activism
work, you’re trying to stick up for the rights of the disabled, you’re doing
all these things- that is the reality for a lot of disabled students on Grounds
right now. What advice would you give to any of those students?
Laura: Paper it! Honestly, I don’t litigate anymore but I
used to be a litigator. I can tell you that people’s memories are faulty and
people aren’t always truthful. But if you document things, document
conversations, if you have an in-person meeting, send a follow up email
documenting what you discussed. People don’t always ant to be held accountable
for things and I think with students, or anybody asking for more than somebody
inherently feels they want or are able to give. I think people can sometimes shove
them aside. I think it is a really good idea to paper whatever requests you
make or changes you suggest or promises people make to help hold everybody
accountable. And don’t be afraid to tick people off. Honestly, that’s the other
thing I would suggest. If you’re an activist, you’re not always going to make
friends with people. People aren’t always going to like what you have to say
but you always need to do what you feel is ethical and right and know that
that’s enough. Not if everyone likes you or agrees with you, you’re doing what
you feel is right. And be comfortable in that. While activism may make you some
friends, it can also make you some enemies. Those are the things I would
During my first year at UVA, I joined the Disability Advocacy and Action Committee (DAAC) and was thrilled to see how individuals from across the university came together to address accessibility in every form. What I realized, however, was that this level of intersectional discourse was missing from the student body.
The DAAC is comprised primarily of deans, coordinators, staff and faculty. Whilst the number of student representatives has grown, these representatives tend to be self-motivated students, independent from student organizations, with a determination to support the disability community. These students tend to have a personal connection to the disability community — through either their own experiences, their family members or advocacy work. What is frustrating is that at the “student administrative” level, at the level of organizations that “lead” at UVA, there is often an empty chair at the table. This is neither through apathy on behalf of these groups, nor a lack of invitation from the DAAC — no particular group is at fault. Instead, it speaks to a larger problem at UVA whereby a culture of competition consistently trumps a culture of collaboration.
Let’s examine this at the insular level of accessibility advocacy. What I admire about the DAAC’s work is its ability to discuss barriers to accessibility across the entire university, integrating voices from across Grounds into one, productive conversation. I want to see more of this from student groups at UVA, especially those that partner with children and adults with disabilities in the Charlottesville community. During my time at UVA, I have worked with several different community groups that primarily focus on accessibility for people that have autism, such as the Accessible Theatre Project (ATP), which provides sensory-friendly performances. I also volunteer with Charlottesville Area Riding Therapy (CART) through Madison House, which operates out of White Hall and offers accessible horse riding lessons to an array of students with disabilities. I frequently recommend each of these two opportunities to community members I meet at events for one or the other. I am often disappointed that people I meet through ATP have not heard of CART, or vice versa. I know that members of these two communities would often enjoy being involved with both.
A great deal of the advocacy work that takes place at UVA is siloed off into individual organizations that severally, do incredible work. Yet, I think that if student organizations were to pool their resources instead, Charlottesville’s community members would benefit greatly from a plethora of opportunities to attend accessible events. At UVA, there appears a tendency to encourage individuals to start new organizations, to innovate, to be individuals. What I propose instead is that we coordinate a greater amount of collaboration to create cross-community interactions that will further benefit those we are already working with individually.
The annual Restoration Ball held by the Jefferson Literary and Debating Society is one example of how much can be achieved when resources aimed at increasing accessibility come from a collaborative environment. In 2018, for the first time in several years, the event was hosted in a new, accessible location instead of the typical Amphitheatre which immediately poses accessibility concerns. The lead organizer that year, Kirsta Hackmeier, took the initiative to ask about other barriers posed by the event, financial and otherwise. I connected Hackmeier with the DAAC and from there, important conversations began. Why do large-scale UVA events hosted by students often lack the necessary consideration Hackmeier gave to accessibility? From website design to sensory-friendly areas, the Restoration Ball was the most accessible it has ever been – but we should not stop there.
Collaboration across advocacy groups at UVA is necessary to ensure that every event hosted by students prioritizes accessibility in all of its forms. Working together to ensure that audiences are representative and that community members feel listened to, is integral to the success of any event. The Restoration Ball in 2018 prioritized accessibility – but it takes more than one annual event. Student leaders need to remember that accessibility is not optional; it is a necessity. Accessibility should not pivot on the interest of individuals but should be a community-wide effort that means attendees with disabilities do not have to constantly question whether or not they can attend due to organizational oversights that could be solved, collaboratively.
The Restoration Ball was successful because Hackmeier not only worked with the DAAC, but through those meetings interacted with Chronically Ill and Disabled Cavaliers and the Student Disability Access Center in order to ascertain accessibility needs. These organizations joined forces, and this is what leads to success. No one group can be an expert on, dare I say, anything. This is why a culture of collaboration needs to be cultivated at UVA.
As we enter into a new year, we should resolve to focus on collaborating more. This could mean seeking input from committees like the DAAC in order to ensure that student-led events are more accessible. It could also involve working with other student organizations to guarantee that if you coordinate with similar communities, that those community members are aware of both opportunities in Charlottesville. Finally, it could mean coming to Student Council’s Disability Awareness Week in February to witness first-hand how collaboration across student groups can lead to dynamic discussions about disabilities, on both a personal and a scholarly level. Through creating external, accessible events, I would hope that student organizations would look inwardly to ensure their own meetings and internal events were equally accessible. Grounds can be more accessible, but only if students actively collaborate together.
Xara Davies is a fourth-year in the English Department’s Distinguished Majors Program with a minor in Urban and Environmental Planning. Xara is the communications intern for both Public Service at UVA and the Biocomplexity Institute. Xara is also a program director for Charlottesville Area Riding Therapy, president of the English Students Association and a member of the Jefferson Literary and Debating Society.
I approached the bus with one hand holding the harness of my guide dog, and the other weighed down with a collection of grocery bags.
“Is this the outer loop?” I asked the driver, hoping my guess was
right, because it was getting late and I wanted to go home.
“It sure is. Haven’t seen you in a while. Beautiful dog you have
there. What stop do you need today?”
After I let him know, I settled down for the 20-minute ride,
secure in the knowledge that I would make it to my stop without incident.
This is just one of so many positive experiences I have every day at the University of Virginia.
Yet, it is an intriguing and thought-provoking exercise to consider how our identities shape us. So many of our characteristics, no matter how seemingly insignificant, define our overall experiences from day to day.
I have been a member of the National Federation of the Blind for several years, starting in early high school. It is this organization that guided me to understand that blindness, while a major part of my identity, is not the characteristic that defines me. Upon further reflection, it is this idea of the defining nature of disability that poses a unique contradiction: to the general public, I am often bathed in a glaring spotlight by my disability, and simultaneously made invisible under its shadow.
A few days after I moved into first-year dorms, I was navigating through the narrow hallways, still cluttered with new furniture and belongings, on my way to class. I walked confidently into the stairwell, pausing to locate the top step with the tip of my cane. In that brief moment before I began the climb down, I heard a throat clearing behind me.
“That’s amazing,” one of my fellow first-years declared.
“What?” I responded, caught slightly off guard.
“How you go down stairs. If I were blind, I can’t imagine how I’d
I paused for a moment, considering my response. How could I
explain, in the few seconds I had before I would certainly be late for class,
that this was nothing out of the ordinary, that my blindness was simply a way
of life? How could I picture something other than this, as she herself was
attempting to do? I allowed the opportunity for a long, drawn-out philosophical
explanation to pass, and instead responded simply, “Thanks, but it’s nothing
In the vast array of similar experiences I have had since that day, I can’t help but point out the commonality: my ability to accomplish simple tasks as a blind person is a larger-than-life feat. Like a circus tiger doing tricks, it is so alien and unexpected, fascinating and magnetic to witness. I am hyperaware of my actions, knowing that surely they are being monitored, weighed, and tested for the slightest sign of uncertainty. So saying, public expectations of blindness rest on a bar that practically touches the ground.
I stood in line at Subway with a friend, waiting impatiently for the satisfaction of a sandwich I’d been craving for hours. As the line slowly inched forward, I recounted the terrible feeling of unease I experienced upon completion of my first accounting exam. I just finished my rambling story when we reached the order counter.
“What does she want to order?” the lady behind the counter asked. I knew, without having to confirm that she was talking to my friend, who was standing in line behind me. I am all too familiar with this scene. The lack of eye contact from my side, or maybe my need for a little verbal instruction to get through the maze of stations , gave me away. To this lady, I had faded entirely into the background, incapable of communicating my needs and unable to interact. I was suddenly invisible.
Throughout my time at UVA, I have often encountered this strange
duality. It stems, predictably, from a lack of education and understanding of
disability. It is an ongoing process, one that I wholeheartedly embrace. I am
fortunate to serve on the Disability Advocacy and Action Committee alongside
students and faculty who are passionate about accessibility and equal access. I
have found a community that is endlessly supportive and a home at a university
that strives to be inclusive to the best of its ability. Nonetheless, there is
plenty of work left to be done.
I present an alarming case. The unemployment rate for people with
visual impairments in the United States is 78%. Many of these individuals have
one or more college degrees, but are discouraged and rejected, because their
disabilities introduce doubt and apprehension into the minds of employers.
Their disabilities trump their qualifications. Their potential worth is
secluded behind the pervasive fear of uncertainty. They are, quite effectively,
invisible. Upon my graduation from this university, I could be one of them. But
I refuse to bow beneath the weight of low expectations.
Every winter, my fellow blind students and I stand on capitol
hill, fighting for legislation that will improve the equality of disabled
individuals. In those moments, as we assert our hopes for the future and we are
not invisible. We are part of something bigger, a feeling we hold close to us
in the face of adversity. Through hard work and determination, I hope to spread
this feeling of triumph to every corner of UVA, so we can work together as the
next generation of leaders to overcome the fear of unfamiliarity and make our
society a more inclusive place.
Mausam Mehta is a second year student in the College of Arts and Sciences. She is the outreach officer for Chronically Ill and Disabled Cavs, a Jefferson Society member, and a student member of the Disability Advocacy and Action Committee.
I wouldn’t call myself an
expert, but I’ve read a good amount of blogs like these. This one is off to a
great start, and I wish I had started something like it when I was a student (Class
of ’14!). Still, I’m happy I was asked to post here.
I’ve read through everything
here, and the entries so far are good, but too familiar. A quick search online
and you’ll find countless stories about students who just want to go to class or motivated allies who just want to help those in need. Sure,
great goals – but seeing a bunch of repetitions of the same story can obscure
the fact that a human with a disability is still a human, with the same spectrum
of adventurous, or unique, or ugly, or violent human desires.
I began my UVa career in the
fall of 2010, and if we’re going to be honest, I came to party. I didn’t want
to learn new subjects or expand my horizons (well, those at least weren’t my
primary goals) – I wanted to drink and do drugs. I wanted to go to frats, black
out, wake up with a tiger inexplicably in my bedroom, and all the other things
that modern culture happily shows as the ‘fun’ part of being a student. I
listened to the song I Love College
by Asher Roth, and dammit, that’s
what I wanted.
But I want this post to be
about more than me. I don’t want to tell you “my story,” because I know that
some of my experiences are not unique
– and I didn’t want them to be. When I started at UVa, my top priority was just
being a student, and enjoy all aspects of the “college experience.” People with
disabilities can be nice and studious, but if we lose sight of anyone’s
humanity, we’re going to do a lot more to make their life a lot worse no matter
how hard we try to help.
Obviously, it’s nice when you
don’t explicitly hate individuals with disabilities. No one has ever physically
attacked me just because of my wheelchair, and unfortunately that probably
wouldn’t be the case if I had a different skin color, gender, etc. But there
are more ways to discriminate, and having a disability will bring you to the
front of the line for soft discrimination.
“You’re so brave!” “You’re an
inspiration!” – these are the kind of backhanded compliments I (and probably most
people with a disability) hear on a daily basis. Personally, I really don’t
care if something I do inspires you. I’m glad for you, but please don’t tell me
about it. It doesn’t make me happy to hear that you’re amazed I got out of bed
or made lunch or completed a 5K in my wheelchair. Go ahead and feel amazed if
you want, but you don’t have to tell me. Just keep moving on with your life.
If you feel like you need to
make the University a more inclusive place, remember that students with
disabilities are still students. For example, think outside the scope of
academic buildings when you prioritize locations you want to make accessible.
A time-honored tradition at
UVa, as any student reading this already knows, is streaking the Lawn. We’ve
all done it so much that it’s not even necessarily an exciting story if you
tell your friends about it. Think about that – running naked down a long field
while a lot of people watch isn’t by itself that interesting. If you tried to
impress anyone at UVa, everyone else
would just nod along, because they’ve also streaked the Lawn at least twice.
But I’ve never heard anyone say that the lawn should be made accessible so
that students in wheelchairs can streak the lawn (I mean I made it happen anyways,
but it took some friends and some strategic planning). If you laughed just now,
honestly ask yourself: Why? Every student does it, and allowing students with
disabilities more access to a common tradition is certainly going to expand
Being a Wahoo is more than
the classes you go to, or the sports games you cheer at, or the parties you enjoy.
It’s a combination of every experience
you have for the years you’re here. If you’re going to help expand
accessibility on grounds, then you should look at every possible area that
could affect student life. And I’m not saying classrooms aren’t on the list of
places that should be accessible – they’re of course near the top.
But that list is expansive, and covers a lot of buildings beyond the classroom. Newcomb, Alumni Hall, and most ‘Old Dorms’ come to mind immediately, but it’s been a while since I could last check out specific areas. I’ll be happy as long as accessibility is centered around allowing humans to act like humans. Not inspiring angels who just want to learn, but regular people with a variety of desires that aren’t always admirable or even appropriate to talk about. In the case of the University of Virginia, making the classroom accessible is only part of the job – the student experience as a whole is what needs to be open to everyone.
Evan Dunks, ‘14 is a UVA alumnus who majored in Foreign Affairs. He currently works as a marketing manager for a nonprofit called the Institute for Humane Studies in Arlington, Virginia.
When applying for the Distinguished Majors Program in the History department, I had to propose a thesis; my plan was to write about disability history in the 1920s. I knew this was an area with a great need for study, with the eugenics movement, immigration restrictions, and disabled veterans returning from World War I, all as possible topics. During the summer before my third year, I kept finding historical anecdotes leading me back to the University of Virginia. The more I read, the more I realized that there was a secret history I could unearth here, or more specifically at the Albert and Shirley Small Special Collections Library. I thought it would be interesting to share three reasons why U. Va. lies at the crossroads of disability history. Those three being Thomas Jefferson and his relationship with a disabled family member, disabled students attending the university during the height of the eugenics era, and an alumnus architect of the Americans with Disabilities Act.
When people talk about keeping the Lawn and other historic locations of U. Va. inaccessible, I often hear them say, “It’s what Jefferson would have wanted.” I never agreed with the premise of this argument: who cares what U. Va.’s founder would think, he’s dead. Regardless, I accepted the fact that Jefferson probably would have wanted to keep his exclusive university accessible to only the very “best” (i.e. free of physical defects)—namely, young, white, Virginian men. Then I began reading Kim E. Nelsen’s A Disability History of the United States. She mentions the fact that Thomas Jefferson had a sister with an intellectual disability. A family friend claimed that Elizabeth Jefferson was “feeble-minded” or possibly an “idiot.” Seeing that she was unable to take care of herself, Thomas Jefferson could have institutionalized his sister, but he chose to support his sister instead. Thomas accommodated Elizabeth in his estate and provided for her. When she died, he raised money in order to pay for a proper burial. This sort of care that Elizabeth received from her brother was more than most disabled people had access to during the eighteenth century, especially without family support.
This is not to say that Jefferson was a friend of the disabled. But Elizabeth’s treatment does stand out as peculiar for the times, a fact conveniently overlooked during the eugenics era at U. Va.
The eugenics era—circa 1883-1945—sought to better the human race by selectively breeding out the “bad stock,” meaning people with defects or disabilities, races other than Anglo-Saxons, criminals, and homosexuals, among many others. Many historians of the eugenics era discuss student papers from Ivey Lewis’ course Biology C1: Evolution and Hereditary. Within these papers, students praised the Nazi’s sterilization program urging the United States to keep pace, claimed that the disabled body was “subnormal,” and advocated for a genocide of all disabled people. Since reading these papers was very jarring, I was surprised when I found in the course records that there were disabled students attending the university during the eugenics era.
In the 1930s, President Alderman and Professor Lambeth created a physical education department in order to help the bodies of the undergraduates be as well conditioned as their minds. Lambeth offered a “Special Education” course for students labeled “defective” (read “disabled”) by a medical practitioner. Thus, it seems like disabled students were always a part of the student body, but their history remains obscured; one exception though, is Evan J. Kemp Jr.
Evan J. Kemp Jr. went to Washington and Lee for his undergraduate degree and U. Va for his law degree. In 1962, he graduated in the top 10% of his class but could not find a job because of his disability. When the federal government eventually hired him, the garage that he parked at as an accommodation had a malfunction and the door crushed him. As he began to use a wheelchair, he became closer with the Disability Rights Movement. People within the DRM asked Kemp, a lifelong Democrat, to vote for Reagan in the next election so that he could be their conservative representative because of his southern upbringing and education. Kemp worked his way up within the Reagan and Bush administrations and sat on the heads of many committees, successfully pitching the DRM as a bi-partisan initiative. Still, U. Va. never celebrated Kemp; his obituary did not make the Cavalier Daily.
I think that U. Va. is missing out on an opportunity by not celebrating one of their most accomplished disabled alumni. University officials are debating whether or not to rename Alderman Library because of the namesake’s disturbing links to the eugenics movement and prejudice against disabled people and overt racism. Kemp’s legacy gives U. Va. a third option regarding whether or not to rename the library: U. Va. could create the Kemp Conference Room and make it completely accessible to serve the disability community. This conference room could house the small collection of books on disability which are currently in the HV 1500 section of the Alderman stacks. Instead of trying to rewrite or do away with Alderman’s legacy, the Kemp conference room could undermine it while enshrining Kemp’s legacy at the university.
My goal over this coming semester is to piece together a narrative that connects all three of these anecdotes and people. The topic for my thesis as it stands today is Changes in Student Perceptions of Disability: A Micro-History of the University of Virginia. I hope that my thesis serves as a tool for the DSI to show that not only is a disability studies program possible at the university but that U. Va. is the perfect university to undertake this project because of its history. Hiding behind U. Va.’s history to keep places inaccessible ignores the disability history that has always been a part of the university and its founder’s legacy as well.
For any suggestions for archival resources for my thesis, please reach out to me at firstname.lastname@example.org.
Ashley Heuser is a fourth year Distinguished History and Government double major. She is involved on Grounds as a student member of the Disability Advocacy and Action Committee and the president of Chronically Ill and Disabled Cavs.
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.