‘A matter of life or death’: Students with disabilities face quandary over in-person instruction

photo of the Disabled Students Program building
Can Jozef Saul/Staff
The Disabled Students’ Program supports students with disabilities at UC Berkeley. With the return to in-person instruction, many students with disabilities face difficulties in academic life.

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Editor’s note: This article is the first in a two-part series on the realities currently faced by students with disabilities.

For some students with disabilities, life at UC Berkeley can feel like a race.

Campus senior Samantha — who asked that her last name be withheld out of privacy concerns — begins each morning by taking a pill, eating some breakfast and just moving through the ebbs and flows of her morning routine.

But from the moment she walks out the door, her anxiety grows.

As she joins the crowds of students shuffling to class down Telegraph Avenue, Samantha takes note of the scores of maskless students and becomes filled with terror. When she sits in a poorly ventilated classroom teeming with students chatting about attending football games in the basement of Evans Hall, Samantha fights the urge to run away.

Diagnosed with a chronic illness amid the pandemic, Samantha suffers from extreme fatigue.

She feels like she is racing through life, scrambling to take notes in class while experiencing the mental and physical strain of being back on campus.

“The smallest thing can really take the wind out of me,” Samantha said.

As people begin speaking about the pandemic as a thing of the past, many students with disabilities are feeling COVID-19’s presence encroaching on their lives. The world around them is slowly returning to normal, but the resurgence of in-person instruction and large social gatherings is raising safety concerns for individuals who are immunocompromised.

Living with a disability  

Though many students are rejoicing over the return to in-person classes, others deplore it.

When UC Berkeley unveiled its plans for instruction, Rosa Kelekian, a graduate student in the Master of Social Welfare, or MSW, program, was in denial. As part of her treatment for her chronic autoimmune conditions, Kelekian is on several immunosuppressant medications that put her at a higher risk of contracting COVID-19.

“A lot of us don’t have the privilege of deciding that we’re feeling done with the pandemic and done with isolating,” Kelekian said. “It really is a matter of life or death for us.”

Remote education brought relief for Kelekian. Though her conditions fluctuate, she said her energy is often depleted from taking the bus and walking on campus, so focusing in class can become difficult.

Without online education, Kelekian said more students are at risk of becoming ill. Some students with COVID-19-like symptoms have been struggling to access remote material or simply do not have this option, which makes them less likely to quarantine, she added.

Like Kelekian, the shift to online learning during the pandemic opened a wealth of opportunities to Liza Mamedov-Turchinsky, but it was an accommodation they had been fighting for over several years.

A self-proclaimed campus “super senior,” Mamedov-Turchinsky is in their sixth year of undergraduate education and transferred to UC Berkeley in the fall of 2019 from community college.

Part of the reason Mamedov-Turchinsky has had to delay their graduation is that none of the universities they attended said it was possible to provide remote learning to support their multiple disabilities, including fibromyalgia and an immune condition.

“All that I want is to be able to complete my education just like anybody else and not risk my life and my family’s lives while doing it,” Mamedov-Turchinsky said.

For campus senior Tabitha Bell, living with Charcot-Marie-Tooth Type 4J — a rare form of the nerve disease Charcot-Marie-Tooth — limits her reflexes and movement and makes her put in more conscious effort into commonly unconscious activities.

Washing her face in the morning and getting dressed can take an hour, and crafting her schedule requires deliberately picking classes with enough in-between time to walk between buildings. Despite her efforts, Bell’s daily life on campus has been sometimes marred by mistreatment.

At the age of 12, Bell chose to use a service dog as opposed to a wheelchair to assist with movement, but she said some professors have not been willing to let her dog Nox into their classrooms. In another instance, after applying to become a research assistant in a professor’s lab, Bell said the professor ultimately did not want her in the lab because of Nox.

Life on campus was complicated by late arrivals and being unable to focus in class due to the fatigue of walking, while Bell’s life on Zoom allowed her to take a “normal course load” and have energy at the end of the day to complete her studies.

Taking her first steps on campus this semester, junior transfer student Shannen Casey felt a flurry of excitement and apprehension at the in-person mode of instruction. Having an autoimmune disorder and living with roommates who are in remission from cancer, Casey said the policies to ensure that high-risk students stay safe remain unclear.

Perhaps a quintessential campus experience, Casey said she has a class in the basement of Moffitt Library, where there is no ventilation and often not enough seats for every student. On the other end of the spectrum, some of her classes are taught outdoors, and while she said this causes less worry, having a physical disability can make sitting on the ground for long periods of time difficult.

Either way, she said she does not have a choice in the matter because some of her in-person classes are required.

“I feel a little powerless,” Casey said. “A sense of bureaucracy is something I’m very used to as a disabled person.”

The pipeline of accommodations

College campuses are a microcosm of the ableism people with disabilities face across the country because society was not built with disability in mind, said Ella Callow, chief Americans with Disabilities Act Section 504 compliance officer and director of the campus office of Disability Access and Compliance, or DAC.

Beyond barriers in accessing the built environment, people with disabilities are facing new challenges from climate change and the looming pandemic, Callow said in an email. For many, the consequence is an increased risk of illness and death; for other students, quarantine exacerbated their disability.

Under the ADA, disability is defined as a physical or mental impairment that significantly limits major life activities. Students who meet this definition and have documentation of their disability can receive services from the Disabled Students’ Program, or DSP, according to Executive Director Karen Nielson.

As of press time, 4,000 students are registered with DSP, Nielson added.

Accommodations are individually assessed for each student, and they cannot “significantly change the objectives of a course,” Nielson said in an email. If a student requests remote instruction accommodations, for example, DSP will look into barriers that prevent that student from being in the physical classroom.

Once an accommodation has been determined, DSP sends a letter to professors to inquire if the accommodation would fundamentally alter their course and if professors raise concerns, the two discuss, according to Nielson.

If DSP agrees with faculty that the accommodation alters class objectives, it will work with students to find other solutions, Nielson added. If DSP disagrees with the professor, it will ask them to implement the accommodation and will bring further concerns to the vice provost for faculty who has the final say.

“If you’re trying to get into a class with a professor who’s fighting against your right to be there, what student even wants to be in that environment?” Mamedov-Turchinsky asked.

To get to this step in the DSP process requires a level of financial stability that many students do not have, according to Mamedov-Turchinsky. Some students do not have health insurance and cannot get the required documentation of their disability, leaving them with no seat at the table to discuss accommodations, they added.

When Rosa Enriquez, a graduate student in MSW with a range of autoimmune diseases and gastrointestinal tract issues, spoke to her advisor about remote learning accommodations, she was allegedly told to take a leave of absence if she did not have DSP accommodations.

If she takes a leave of absence, she will lose her health insurance. That was not an option, Enriquez said.

After a long back-and-forth between doctor’s appointments and DSP beginning in the summer, Enriquez said in an email that she received remote accommodations Sept. 20. The timing, she said, was “quite interesting” as she had a meeting with Nielson scheduled for the following day.

Kelekian, a classmate of Enriquez, started a dialogue with DSP in July and also awaited its decision about securing remote accommodations until late September.

According to Nielson, the DSP process usually takes about two to three weeks, and delays can occur if students do not submit documentation or fail to request an intake appointment. Students who disagree with a DSP decision can file a complaint with DAC, Nielson added.

Enriquez will be filing grievances against University Health Services — because the doctors allegedly delayed her accommodations by weeks — and the School of Social Welfare for denying students from remotely attending field seminars as professors say this will alter the course, she said in her email.

“Instead, we will be placed in a group of 3 DSP students, further isolating DSP students and preventing us from equal education,” Enriquez said in her email. “DSP students’ perspectives are erased from the greater SSW cohort.”

At the end of a long day, once everything has been said and done, Bell said some students with disabilities simply do not have the energy to fight against mistreatment.

“Just going over to the DSP building to tell your complaint takes so much energy and so much effort that we just don’t have,” Bell said.

Contact Maxine Mouly at [email protected], and follow her on Twitter at @moulymaxine.