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.