Aubrie Lee ’14 found herself stuck on the second floor of Cummings Art Building. She had taken the elevator up to her class and planned to take the elevator back down afterwards — that is, before the elevator broke. She sat in her wheelchair, unsure of whom to call. She tried the Diversity and Access Office, who rerouted her to a different number.
“They didn’t understand who I was,” Lee said. “I had a hard time getting across that I was sitting in my wheelchair while I was telling them what my situation was.”
All this took place on a Friday — and, as Lee would find out, the elevator could not be fixed until Monday. After several hours, Lee’s peers ended up carrying her down the stairs.
“I felt totally lost,” Lee said. “That shouldn’t have happened. There should have been some system in place for this kind of situation.”
Lee, who has a rare form of muscular dystrophy, published a comic in September in STATIC that incited concern about the University’s approach to accommodating students with disabilities. Lee’s comic is the latest installment in a wave of student-initiated efforts that raises the question — but is it enough?
Obtaining accommodations: the basics
There are currently 1,745 undergraduate and graduate students registered with the University’s Office of Accessible Education (OAE), which is responsible for coordinating accommodations for students with disabilities.
The four-step process each student must undergo to obtain accommodations is a straightforward one, according to Joan Bisagno, director of the OAE.
First, a student seeking accommodations must call the office and explain his or her disability. Then, the student must submit official documentation of disability in accordance with the University’s “equal access” guidelines.
“For example, in elementary school and high schools, people might’ve said, ‘Take as long as you need on the test,’” Bisagno said. “But when you get to college, there has to be a time limit, and it has to be reasonable and fair.”
If the OAE approves the provided documentation, the student meets with a disability advisor or learning specialist to discuss the specific academic and residential accommodations that he or she may need. These accommodations may range from closed captions on in-class films to a hired notetaker to extended time on exams.
The student and advisor then work in tandem to implement these accommodations with faculty, although the student handles most direct communication with his or her professors.
Lee admits Stanford was among the most accommodating universities she considered applying to — but she was also quick to point out that what seems to be a straightforward process at first glance could become much more complicated on a case-by-case basis.
“It’s sad to me that Stanford is the best at accommodations, considering how much better they could be,” Lee said.
Lee, a product design major, recalled having to take ME203: Design and Manufacturing as an undergraduate to fulfill her major requirements. Since she was unsure of how she would be able to meet the physical demands of the class, she talked to her adviser and then to each of the ME203 professors. Only after speaking with each faculty member did she learn that she should ask for a lab assistant in the shop.
“The fact that this was not readily available information…it’s very disorganized,” Lee said. “I bet there have been other students who have taken ME203 who have needed lab assistants. If there were, then there was no place for them to share that knowledge.”
Other more common complaints among students with disabilities include the absence of elevators in the freshman dorms, the lack of automatic doors for buildings with classrooms and the need to renew accommodation forms every quarter.
Of course, not all of these disadvantages are visible to the naked eye.
Erika Kreeger ’16, who was diagnosed with autism after coming to Stanford, described the difficulties she has experienced because of her “invisible” disability.
“The professors…don’t need to know my disabilities,” she said. “They need to know my accommodations. But oftentimes, there’s a sense of judgment. ‘You don’t look disabled. Why do you need these accommodations?’”
Indeed, students like Kreeger argue that “accommodations” for students with disabilities should not be limited to receiving extended time on exams or having technology to open doors. They explained that the psychological demands of disability warrant taking an additional look at the culture surrounding students with disabilities on campus.
The push for community
Disabled persons constitute 10 percent of the world’s population, rendering them the largest minority group in the world, according to the United Nations Convention on the Rights of Persons with Disabilities.
Yet unlike many other minority groups on campus, Lee pointed out that students with disabilities lack a discrete space where they can congregate and engage in community building.
Kreeger agreed and described the psychological effects that disability can induce even in non-academic settings — effects that the administration often cannot adequately address with its current range of available accommodations.
“That’s really intimidating and difficult to be that one person who had to have the accommodations…[when] you’re physically disabled, and you’re the only person who can’t go to the first, second or third floors of the dorm because there’s no elevator to go the upper floors of your dorm where the party room is,” Kreeger said.
The push for increased community-building efforts for and among students with disabilities produced results in 2013, when Vivian Wong ’12, Lee and others founded a student group called Power2ACT (ACT standing for “Abilities Coming Together”) for students with disabilities and their allies at Stanford.
Power2ACT takes a three-pronged approach to tackling issues pertaining to disability: academic, social and activist. Many of Power2ACT’s members advocate for the creation of an on-campus community center for students with disabilities.
Jacky Garcia ’16, who was diagnosed with schizophrenia and bipolar disorder over the period of three hospitalizations, expressed hope that a community center could serve as a base for peer-to-peer connection.
“I feel like there is a huge community of people with disabilities, but it can feel kind of isolating, especially if you have an invisible disability like I do,” Garcia said. “There is no way of telling, ‘Oh, that person has depression or something.’ It’s hard, not having a space where you can meet other people who are going through similar things as you.”
Bisagno noted that the idea of setting aside a space for the disability community had been brought up in the past.
In the late 1990s, a student coalition called Disabled Students at Stanford secured an old library space in Wilbur to meet and discuss issues surrounding disability at Stanford. Bisagno said that while she would be supportive of students if they wanted to establish a formal space to meet, budgeting funds prevent the OAE from spearheading such an operation.
“It takes a student leader…to have a continuity going beyond their time here,” Bisagno said.
But Lee said that the students would benefit from first having a community center in order to then strengthen the connections between students interested in disability-related issues.
“Community is, in many ways, the answer to a lot of the academic and social problems,” Lee said. “If the disability community were tighter, they could do the kind of advocating I did not feel I had the bandwidth to do.”
Though the University has established a system for obtaining residential and academic accommodations, Lee still wondered if providing baseline accommodations was enough to promote understanding among students and faculty about disability.
Last week, Jen Ehrlich ’16 met with a professor to talk about a paper. Her professor asked her how the class was going, and Ehrlich responded with enthusiasm. She explained to her professor that she had not read anything like the material they were reading in the class because she had not attended high school.
“She was like, ‘What do you mean you didn’t go to high school? How did you get here if you didn’t go to high school? Why didn’t you go to high school?’” Ehrlich said.
Ehrlich explained that she had been too physically exhausted to attend school — that her symptoms were chronic, that there was no cure and that her condition might worsen in the years ahead.
“Her response was, ‘Oh, well…are you happy?’” Ehrlich said.
“On the list of things not to say to people when they tell you they have a chronic illness, ‘Are you happy?’ is pretty high up on that list, because it implies that your quality of life is less than others…which tends to be our societal view of it,” Ehrlich added.
Lee’s and Ehrlich’s opinions are far from uncommon. According to a list published by Dealing With Different, a support site for the physically disabled, Stanford ranks No. 16 in terms of accessibility for students with physical disabilities.
In rankings published by other organizations like the disability nonprofit New Horizons Un-Limited and college preparatory group College XPress, Stanford did not make the lists.
One disabled student who sought accommodations beyond those typically provided by the OAE found the University’s policies inflexible.
“Stanford works under the philosophy that there are certain services they’re required to give and that any other services they’re not explicitly required to give, they don’t have to give and therefore will not give,” the student said.
During the student’s time at Stanford, the student’s diagnosing therapist wrote a letter recommending that the University provide a specific accommodation.
However, the request was denied because, as the student was allegedly told by an OAE coordinator, the request did not fall in the realm of accommodations the University was required to follow by law and granting the request would set “bad precedent.”
“There are other universities out there that see disability as, ‘We are supposed to make life here habitable, good, excellent, equitable for [students with disabilities],’” the student said. “There are other universities…[that will provide] things that are not explicitly stated out in laws that were written 20, 30 or 40 years ago.”
Lee suggested that shortages in University support for students with disabilities may be attributed to broader societal ways of understanding disability.
She cited the medical model of looking at disabilities, which claims that disability lives inside a person, and compared it to the more progressive social model, which claims that disability lives in one’s environment.
“According to the social model, the burden of disability should not be on an individual’s shoulder, but on society to include and accommodate all of its members,” Lee said.
Garcia agreed, adding that disability is “as much as race and gender, a diverse part of the human experience.”
But how does a University begin to tackle an issue that runs deeper than the institution itself?
Lee proposed the establishment of a formal feedback system to generate administrative accountability to student concerns, though she does not know what form that kind of system would take.
“Maybe it could be office hours where you go to someone in the administration and say, ‘These are the problems I’m having.’ Just having some way for the administration to be accessible for addressing needs [of students] and not just saying, ‘Okay, thanks for talking with us, but we’ll just put this file away and not look at it again,’” Lee said.
To the future: Taking another look at disability
This past September, incoming freshmen gathered at Memorial Auditorium for Faces of Community, a New Student Orientation event exploring diversity at Stanford. Among this year’s speakers was Ehrlich, who gave a speech about her day-to-day experience living with an “invisible disability.”
“My illness is not who I am…but it is present in my thoughts and physical sensations every day…There isn’t one activity that my illness doesn’t affect…where I live, what I eat and even how I spend my Friday nights,” Ehrlich announced to the hushed auditorium.
“But I am also a Stanford student. I am also a friend. I am also a young adult. I am not just like you, but I am not all that different,” Ehrlich added.
“Not all that different” is a statement Lee can get behind. Though time has helped Lee come to terms with her muscular dystrophy, she knows peers who are at different stages of understanding their disabilities.
“It would be a true pleasure if people with disabilities were so included in society that they would not be abnormal,” Lee said, likening having a disability to being a certain ethnicity or having an unusual hair color — all qualities that once estranged, and all qualities that are now more or less commonplace.
“Disability is a beautiful part of human diversity,” Lee said. “It’s important that society does not treat it like anything else.”
Caleb Smith, Michael Gioia, Alexandra Bourdillon and Rebecca Aydin also contributed to this story.
Contact Madeleine Han at mhan95 ‘at’ stanford.edu.