Identity and the Nuance of Marginalization

By Heaven Begum

Amma gave birth at home. There was a hand generator supplying power for twenty minutes. Flooding would sink the place up to two feet. Water came from a well—contaminated. Bamboo logs were bridges to cross rivers. We farmed chicken and grew rice. And bugs, everywhere. 

It is December 1999. From Dhaka to London to NY, Amma arrives with Abba, my two brothers, and me in the womb. Amma remembers falling asleep on a real mattress, a luxury. 

The story of my mother is one that has taught me a lot, beginning at a very young age. Like many others, she arrived in America with hopes of a better life and future for herself and family. Soon after, she became bedridden. Diabetic, Amma developed severe chronic fibromyalgia after I was born and struggled to care for herself and us. Her greatest challenge, however, was not dealing with symptoms of her condition but navigating the cold rigidity of society’s institutions, structures and systems towards people like her. 

In the months following my parent’s separation and my father’s departure, we struggled. My immigrant, non-English speaking, disabled mother of six and I struggled to learn the world around us. We did not know how to obtain a city bus pass or open a checking account or afford to keep the heat on that winter. 

In 2013, my mother was served a summons and complaint to appear in court. Unable to work, Amma lacked a stable source of income and we were facing eviction as a result. We didn’t know our rights or how to defend ourselves but still, we were due in court. We found ourselves navigating countless offices, stacks of paperwork and language absolutely foreign to us for survival. It was in these experiences and circumstances that I was exposed to the significant gaps in accessibility that exist for marginalized communities of color and ability, particularly for those from low socioeconomic backgrounds.   

In efforts to secure a source of income, we began the application process for Supplemental Security Income (SSI) in 2014. Truthfully, I thought we had caught something of a break, learning of a program specifically meant to help people like my Amma, low-income and disabled. I quickly realized I was wrong when even applying, let alone getting approved, started to feel impossible. 

Completing the initial application packet was among one of our biggest hurdles; provided only in English, my mother’s understanding of the questionnaire was very limited and thus was her ability to accurately describe and provide answers. Moreover, a completed application was to include Amma’s full medical history, requiring that she sign off on release forms from every hospital, clinic, or specialist she had visited in the last decade—a daunting task for someone with no means for transportation. Having no car presented yet another barrier as Amma struggled to make it to the medical examination called for by the administration in order to process and proceed with her case. 

During the interview stage, Amma struggled to communicate as the administration failed to adequately accommodate her linguistic needs, aimlessly providing Bengali interpreters who spoke entirely different dialects than that of my mother’s. Soon after, when denied after reconsideration and required to attend a hearing for the appeals process, Amma found herself in court yet again with no interpreter. 

Though finally approved in 2016, we struggled for nearly three years before this was possible. In these three years, I watched as my mother’s identity as a low-income, disabled immigrant rendered her an outsider kept at the margin. With so little effort put forth to accommodate her unique sociocultural experiences and circumstances,  I witnessed the day to day realities faced by individuals who find themselves at the intersection of overlapping marginalized identities. Most importantly, however, I learned first-hand of the importance of advocacy and representation in shaping social outcomes. 

In Latin, diversity means ‘turn into one’. With post undergrad plans to pursue a JD and career in law, I seek to dedicate my work to pulling those at the margins in. I only hope that others recognize the need for care in underserved populations in their work and protect those most vulnerable, people like my Amma.

Heaven Begum is a fourth year at UVA majoring in Global Studies with a concentration in the Middle East and South Asia and minoring in American Sign Language and Deaf Culture. She is an executive member of Deafness Education and Awareness for Students (DEAFS), Hoo’s First Look (HFL) and is heavily involved with QuestBridge and the first-generation, low-income student body on grounds. Additionally, she currently tutors ASL and serves as the Student Administrator for the Disabilities Studies Initiative. Following graduation, Heaven plans to attend law school and pursue a career devoted to serving underserved and marginalized communities. 

Challenge of Masks and Children with Disabilities in Schools

By Martin E. Block

Imagine your child with a disability cannot wear a mask, but he attends a school district with a strict mask-wearing policy. As a result, the school district says your child cannot go to school in-person until he can wear a mask. The school district offers a few hours a day of homebound instruction. In addition, the district says your son can come to school for about 30 minutes a day to work on mask wearing, but not to work on IEP objectives or social skills. Are you OK with this scenario? Now imagine your child with a disability is severely immunocompromised, but she attends a different school district that does not require children to wear masks. As a result, you do not feel comfortable sending your child to school, and the school district offers a few hours a day of homebound instruction. Are you OK with this scenario? Unfortunately, both cases are real, and in both cases, parents are arguing that such policies are violating their child’s rights under the Individuals with Disabilities Education Act (IDEA) and other federal civil rights laws.

The first scenario is taking place in my home school district in central Virginia. Albemarle County Public Schools has been denying in-person learning access to students with disabilities who can’t or won’t wear a face covering. Albemarle Schools says that a student who is not comfortable wearing a mask has three choices: virtual school, home school or a private school. Parents of children with disabilities say that the mask policy and its implementation force a small but vulnerable population of students into virtual learning, which parents say doesn’t meet their children’s needs. Parents say their children will not receive the supports they need to progress academically and learn. Interestingly, other school districts in the area are being more flexible with mask policies for their students with disabilities. It is unclear why Albemarle chose to strictly enforce mask-wearing among students with disabilities during in-person instruction, especially when the State Department of Public Health issued an exception to state-wide mask mandates for “persons with health conditions or disabilities that prohibit wearing a mask.”

The US Department of Education clearly noted that state and federal special education laws cannot be suspended during the pandemic, so schools are still obligated to provide services spelled out in a student’s individual education program (IEP), a legal document. A lawyer for a legal justice center in central Virginia said that school divisions should assess each child individually to determine whether it is possible to accommodate their disability and make an exception to the general mask policy.  She suggested that if children who are unable to comply with mask mandates because of their disability and also are unlikely to benefit from virtual school, then accommodations to the mask policy are warranted.

In the second scenario, parents of children with disabilities who are immunocompromised are suing school districts over a lack of mask mandates in schools. Complaints filed in Tennessee, Florida, Utah, Texas, and South Carolina argue that limiting mask mandates infringe on disability rights, and that children with disabilities and their parents are being forced to choose between their health and their education. One parent said, “We hear all the time, ‘Oh, only kids with preexisting conditions are the ones that get sick and die,’ Well, that’s my kid. That is my child. He has a lot of preexisting conditions, and he matters.” The U.S. Department of Education has also said restrictions on mask mandates may be discriminatory against students with disabilities. On Aug. 30, the department’s Office for Civil Rights announced it is investigating mask mandate restrictions in the five states mentioned above. The lawsuits are not demanding schools institute a mask mandate. Instead, the lawsuit is asking for schools to be given the right to require masks based on regional health metrics rather than having to abide by a state directive prohibiting mask mandates.

Lawyers cite IDEA and Section 504 of the Rehabilitation Act, which guarantee that children with disabilities have access to a public education. Both laws also require schools to provide “reasonable accommodations” to help make that education accessible — and the complaints argue those accommodations can include masks for everyone. Matthew Dietz, one of the lawyers who filed that lawsuit, says mask mandates meet the benchmarks for a reasonable, necessary accommodation. “If they don’t get that mask when they go to school, they’re at higher risk of death. So yes, it’s necessary,” Dietz says. “Is it reasonable? It’s a piece of cloth, it’s not difficult. Would it cause a fundamental alteration or an undue burden to the school system as a total? Not at all.” Dietz adds that it’s just as reasonable as accommodating peanut allergies, which schools have been doing for years. So, where does that leave parents and school districts? On the one hand parents are asking for exemptions from mask mandates, while on the other hand parents are asking for stricter mask mandates. In both cases IDEA and Sec 504 of the Rehabilitation Act have been cited as guaranteeing all children with disabilities have access to public education. Furthermore, both laws specify that reasonable accommodations must be made to ensure that access. Seems like one needs the wisdom of Solomon to satisfy parents in both scenarios! There clearly is no easy answer, but permit me to give it a shot. In the first scenario, parents working with Albemarle County Schools have suggested better ventilation and air filtration systems in special education classrooms, teaching outside when possible, great spacing between children, and having teachers and therapists wear masks and shields when teaching students who cannot wear masks. These seem like reasonable accommodations that do not impose an undue hardship. In the second scenario, having teachers and children in the child’s classroom as well as teachers and specialist within the child’s sphere (e.g., physical education teacher, speech therapists) wear masks when in contact with the child. Similar to above, efforts for greater ventilation and spacing as well as teaching outside when possible seem reasonable and do not present an undue hardship to the teachers, therapists, other students, or the school. While some parents may be generally against mask mandates, they may be more receptive to having their children wear masks if they know a specific child in their children’s classroom is immunocompromised and in danger of dying if she contracts COVID. Starting from a place of “what is best for this particular child with a disability” is most likely to help everyone focus on what is most important and end with a compromise that is satisfactory for all parties.

Martin E. Block is professor at UVA and the Program Director of Kinesiology for Individuals with Disabilities (KID). His coursework includes classes on Physical Education for Children with Autism Spectrum Disorder, Physical Education for Children with Severe Disabilities, Kinesiology for Individuals with Development Disabilities, Motor Development and more. Beyond teaching, Professor Block has done considerable work for the Virginia Institute for Autism, Little Keswick School, University of Virginia Children’s Hospital, Charlottesville Area Special Olympics, and the Virginia School for the Deaf and Blind. Notably, Block has also served as the past president of the International Federation of Adapted Physical Activity (IFAPA) and past president of the National Consortium of Physical Education for Individuals with Disabilities (NCPEID).

Making a Life I Wasn’t Given

By Noor Samee

I am an agent of chaos or creativity depending on which way you want to look at it. 

I was in Kindergarten. Ms. Smaglis handed me a piece of thick paper and a black sharpie. I didn’t know what was going on, so I looked over at my neighbors papers to see what they were drawing. Oh, our families. Okay yeah I can do that.

One by one, kids would go up to Ms. Smaglis’ table with their papers and continue their picture. I wasn’t sure why they kept going up to her desk, so I pretended to get a tissue so I could hover around the teacher’s desk and figure out what was going on. They were adding paint to their drawings. Ooooo I want to add paint to mine too. I finished outlining as quickly as I could and walked over to Ms. Smaglis’ desk. Even though I drew my picture as fast as I could, I still somehow managed to be one of the last kids to come to the painting table. But I was excited that I finished my outline in time, and I was about to bring my drawing to life. Ms. Smaglis asked me why I colored in my mom’s hair, “Remember I told you not to color in with the sharpie? Remember I said you’re going to use black paint for that?” I didn’t remember her saying that at all. I made whatever excuse I could come up with so she wouldn’t get mad at me, but I knew I wasn’t fooling her.

And just like I would for the next five years of elementary school, I did well on every portion of my report card except, “Listening and following directions”.

As school went on, work only got harder. I graduated high school with a GPA so low my counselor didn’t think I would get into a university. No matter how hard I worked, how many holidays I skipped, and how many all nighters I pulled– I couldn’t make good grades. And it was frustrating. I was trying so so hard. But nothing I did could make me function the way neurotypical people do.

So I stopped trying. All that time I used to spend mad at myself for not finishing assignments, I started to spend learning why I couldn’t do them. I journaled every day to identify what habits help me feel happy, focused, energetic, etc. I researched my disabilities and mental illnesses in depth, as well as coping mechanisms other people use. I still couldnt get my assignments done, but I stopped blaming myself for it.

Every day I wake up not knowing what my mind and body will let me do. Sometimes, I can cook meals for an entire week in one day, but I can’t leave my house. Other times, I can socialize nonstop without issue, but I can’t sit down and write a paper. So every day I listen for the creaks and feel for the pulls and watch for the lighthouse beam inside me. I let how I feel lead me to a destiny I have very little control over. 

Is it enough to say that not knowing what I am doing is exactly what brought me here? When the aunties ask me how I got into this college and I tell them it was an accident? Because I have never been good at making deadlines. I can’t memorize information. And I can barely pay attention in class. As long as something feels boring, my brain will refuse to do it. So even if it means taking risks, I have to make my work feel interesting. I stopped trying to follow directions. Now I just make my own.

Last year, I asked my professor if I could turn in an album of original songs instead of writing her 30 page capstone research paper. It was an idea just wild enough that only someone really desperate could think of it. I knew I couldn’t write that paper. But I also knew I couldn’t graduate without her class. I don’t know how or why she let me do it, but 3 months later, I turned in six songs and an interlude. My professor loved it.

Growing up disabled has made me have to learn how I think and function, as well as how neurotypicals think and function all at the same time. It has forced me to be creative enough to do what neurotypicals expect of me, while also finding my own way of getting there. Although struggling with school is a large part of my neurodivergence, there is so much more to it that I couldn’t mention in this blog. From the way I socialize, to the way I process information, to the way I experience sound, light, and texture– my disability is a huge part of who I am. And while my peers, professors, and employers continue to be ableist, I know that I see and understand the world in a way no one else can. I’m proud of all the chaos and all the creativity I bring into my life, just by being me.

Noor Samee is a fourth-year in the College of Arts and Sciences studying Global Development Studies. She’s interested in food sovereignty work, creative journalism and both singing and songwriting. Noor is also very passionate about nature and currently helps facilitate a spirituality series at UVA.

What Can a Designer Do?

By Omer Gorashi

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.”

Sara Hendren, “What Can a Body Do?: How We Meet the Built World”

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.

UVa’s Disability Rights Movement

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.

Transcript:

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 1990?

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.

Ashley: Right.

Laura: I’ve got children your age

Ashley: Right.

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 area.

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 mediocre.

(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 suggest.

Cultivating a Culture of Collaboration

By Xara Davies

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. 

The Visibility Paradox: My Experience with Disability at UVA

By Mausam Mehta

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 do it.”

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 special.”

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.

Students are Students, Disabilities or Not

By Evan Dunks ’14

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 their opportunities.

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.

Discovering U. Va.’s Disability History

By Ashley Heuser

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 arh3ew@virginia.edu.

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. 

Disability as Part of Human Diversity: Dr. Marcus Martin’s Influence

Dr. Marcus Martin smiles in a suit and tie with a UVA pin on his lapel

By Christopher Krentz

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’s American 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.