For students with disabilities on college campuses, the last two years of the pandemic have highlighted and magnified vulnerabilities and inequities in their access to higher education. As a result, more of these students are speaking out about the challenges they faced and forming campus groups to advocate for themselves. They're also requesting expanded accommodations and more inclusive environments -- challenging college administrators to figure out a path forward.
The increased activism by these students has led to growing tensions between them and college administrators. One such case recently spilled onto the pages of the California Tech, the student newspaper at The California Institute of Technology, with dueling perspectives on these challenges and how to best handle them.
Riley Brooker (right), a rising sophomore at Caltech, detailed her experience seeking accommodations from the university in a recent front-page opinion piece in the newspaper. She requested permission to miss classes, without being penalized on grades, after she started having frequent, recurrent seizures in April that made it difficult to regularly attend class. She said administrators were unwilling to change class polices so she went on medical leave, moved off-campus, and began working on a complaint to Caltech's Equity and Title IX Office, alleging disability-based discrimination.
"It has been made extremely clear that Caltech does not care for the welfare of its disabled students," Brooker wrote in the opinion piece earlier this summer.
Brooker, an international student from the United Kingdom, also has been diagnosed with ADHD, autism, fibromyalgia as well as anxiety and depression. She's hopes to return from medical leave in time to start classes this fall, but Caltech's dean of undergraduate students will have to sign off on her return.
Lesley Nye, the interim dean of undergraduate students, and Kristin Weyman, the associate dean, were both involved in the request for accommodations, though Brooker said she worked the most with Weyman.
Shayna Chabner, chief communications officer for Caltech, said the university would not comment on an individual student's case.
"We work closely with each student who seeks an accommodation to create the best possible tailored accommodation that meets their educational objectives in a manner that is consistent with our policies and state and federal law," she wrote in an email.
Caltech did not make Weyman available for an interview.
Brooker is not the only student who has spoken up about the challenges with receiving accommodations. Across the county, from Princeton University to the University of Southern California, students with disabilities have shared their stories of being denied accommodations, raised concerns about the return to in-person classes, and advocated for more inclusive campuses. At American University, students formed a student union to raise awareness about the challenges they face and provide support to one another, among other goals.
"It's actually been a really positive trend to see students being fierce advocates for their education," said Jasmine Harris, an expert in disability law at the University of Pennsylvania. "Getting the type of attention collectively has been a net positive aspect that's come out of the pandemic. There's a lot more collective action."
Under federal law, including the Americans with Disabilities Act, Caltech is required to provide "reasonable accommodations" to students with disabilities. But what is considered reasonable depends on an individual's situation and the institution, Harris said.
"The scope of what's reasonable is broader because we've all experienced a different way of receiving education and, from my perspective, delivering educational content," Harris said.
Sneha Dave, executive director of Generation Patient, an organization that supports and advocates for young adults living with chronic health conditions, said stories like Brooker's aren't unusual.
"I don't think people realize how stressful [navigating higher ed] is with a disability, particularly with a chronic medical disability," Dave said. "It's often dynamic in nature and doesn't present the same way every single day."
During the pandemic, Generation Patient branched into higher education advocacy and offered peer support groups for students with chronic conditions. Dave said students need flexibility and virtual education options.
"It's a lot of administrative work that goes into living with a chronic condition, and I think the opportunity to have that flexible and online education is something that just cannot be understated," she said.
Dave said she sees opportunities to improve the experience of students with disabilities on college campuses. But, there's currently a lack of understanding and data regarding how disability affects the pursuit of higher education that could help guide efforts to improve outcomes for those students. Specifically, she would like to see more data on retention rates for this group.
"People in our community can spend several years getting a degree which is totally OK," Dave said. "But if there are access needs that are met, the opportunity to pursue and complete a degree in time is obviously preferred than having to extend something for years."
College officials who work on disability and access issues are increasingly trying to address those unmet needs, according to the Association on Higher Education And Disability, which represents college disability resource officers or managers and helps them make their campuses more accessible and friendly for students with disabilities.
Richard Allegra, director of outreach and information for AHEAD, said the association has seen an increase among its members looking for resources on working with students who have non-apparent disabilities or chronic illnesses.
"Part of that is just over the last couple of decades, more and more students are surviving different kinds of conditions," he said. "At one time, they would have been fatal, but because of advances in medicine, the students are surviving and thriving. It's kind of like dominoes from that point."
'Fight for what I need'
Brooker was specifically seeking a modification to class policies that either required attendance or had graded in-class assignments that students were not permitted to make up. As a result of the seizures and related medical appointments, Brooker said she was unable to attend many of her classes, and missed about 30 percent of the in-class assignments in a physics course. She said she was on track to pass three of her four classes, including one she ended up dropping, before she went on medical leave.
"These seizures are not of the serious kind in that I don't lose consciousness and require immediate emergency care -- but are still extremely disruptive, causing me to jerk uncontrollably multiple times per hour, as well as zone out and not even realize any time has passed at all," she wrote in the op-ed article.
The seizures became more frequent in April and she met with Weyman, the associate dean, to discuss flexibility with class attendance policies, she wrote that she was told that wouldn't be possible and was encouraged to take medical leave.
"I don't think of getting rid of me as an accommodation," she said in an interview of the leave option.
Chabner, the university's spokesperson, responded to Brooker's complaints in a letter to the editor that ran alongside Brooker's piece.
Chabner wrote that the dean's office and Caltech Accessibility Services for Students, or CASS, had "a fundamentally different perspective on our interactions and the services provided by Caltech."
Chabner encouraged readers to visit the CASS website for information about processes for registering to receive accommodations. She also outlined information about accommodations provided, which varies from an occasional short extension on assignments and notetaking support to a reduced course load or medical leave.
"CASS strives to meet the requirement that disability accommodations in higher education be reasonable," Chabner wrote. "Such accommodations may not lower or substantially modify essential program requirements, fundamentally alter the nature of the Caltech service, program, or activity, or give rise to an undue financial or administrative burden. For example, students must attend class if class attendance is one of the fundamental expectations of a course. Faculty set the fundamental expectations for each course."
Within those parameters, CASS can support reasonable accommodations, she wrote.
She added that, "We are confident in our process and remain committed to working with each student to meet their educational objectives in a manner that is consistent with the rights and responsibilities set forth in our policies and state and federal law."
About 200 students or 10 percent of Caltech's student body were registered with CASS as of June, which is a requirement for receiving accommodations, according to Chabner's letter.
Chabner wrote in an email that the university takes several factors into account when deciding whether to modify policies in line with Office of Civil Rights guidance.
For students who are unable to manage a full schedule of classes due to a chronic condition, Chabner wrote that the university can provide an accommodation for "ongoing underloads" -- which means allowing students to take fewer classes than what's considered a full-time course load. Full-time at Caltech is 36 units, and the university doesn't allow students to study part-time, according to its website. Taking fewer courses does affect a student's financial aid.
Brooker was at 27 units for the spring term, and Weyman suggested that Brooker further reduce her course load, according to Brooker's meeting notes.
Caltech also offers students the option to go on medical leave, which allows them to withdraw rather than becoming "academically ineligible" due to a low GPA and thus unable to register for the next academic year.
Going on medical leave meant Brooker couldn't live on-campus, per Caltech policy, leaving her homeless for the summer unless she was granted an exception to stay on-campus by the undergraduate dean of students. She did not receive it, according to an email .
After Brooker's piece ran, a Caltech student started a GoFundMe campaign that raised more than $4,000 to help Brooker pay for housing. She rented an apartment off-campus.
"A school that costs $80,000 a year has the resources to help me," she said. "In the end, it was the students who are paying that much who ended up financially helping me instead."
Caltech did offer to pay for a plane ticket for Brooker to return home to the United Kingdom or provide an emergency loan to cover a month's rent and security deposit, she said. Brooker said she had a summer job lined up and going home wasn't an option. She described her family situation as "unsafe."
Another Caltech student, Abigail Jiang, also voiced support for Brooker in the pages of the student newspaper.
"I think it's also crucial to emphasize that this is not an isolated incident," Jiang, who is chair of student government's advocacy committee wrote in a letter to the editor in the campus newspaper. "By no means is this the first instance of systemic ableism perpetuated here at Caltech. Various aspects of the pandemic this year have (re)amplified the multiple ways that students with disabilities are left behind and actively harmed by a lack of accessible coursework, health resources, and other support structures."
Brooker said her ordeal worsened her anxiety and depression, but she decided to publicize her experience after her attempts to go through official channels failed. She thought raising awareness about her experience would bring attention to the difficulties students like her face, rally support from the Caltech community and encourage the dean's office to change its stance.
"I'm in a position where I'm not afraid to speak up," she said. "I will fight for what I need. … At the end of the day, I shouldn't have had to publish an article to the entire student body telling them, 'Hey, I'm disabled.' But if that's what it takes, that's what I'll do."