Sometimes when she sleeps, Lindsey Hornbuckle ’10 stops breathing.
Hornbuckle enrolled in Princeton as a member of the Class of 2008 but took time off after she was diagnosed with postural orthostatic tachycardia syndrome (POTS) during her sophomore year. POTS affects the autonomic nervous system, which regulates the body’s involuntary functions such as hormone levels and blood pressure. Hornbuckle suffers from a number of conditions related to POTS, including severe fatigue, clinical depression and difficulty breathing during sleep.
Disabled students like Hornbuckle make up less than 2 percent of the University student body, compared to about 3 to 4 percent at other Ivy League universities, said Eve Tominey, director of the Office of Disability Services (ODS) in the Office of the Provost. But this figure may reflect only those students who seek ccommodation, Tominey added, noting that other students might keep quiet about their disabilities.
This discrepancy between the number of disabled students at Princeton and at other schools exists “probably because the office has only been here for not quite two-and-a-half years,” Tominey explained.
ODS was created in late 2006 to provide accommodations for students with disabilities. Arrangements made by ODS range from academic adjustments such as reduced course loads and deadline extensions to issues like wheelchair access to buildings on campus.
University policy, in accordance with federal law, defines a person with a disability as someone with “a physical or mental impairment that substantially limits one or more major life activities.”Students may not be forthcoming about impairments, Tominey noted. “Students are not quite as quick to identify [as disabled] at Princeton ... Our numbers are pretty close to Harvard’s,” she added.
Princeton’s high academic standards and perceived culture of perfectionism, students said, may influence the visibility of students with disabilities.
“There’s a lot of emphasis here on performance and perfection and making your own way,” said Kelly Matula ’09, who has had cerebral palsy and a visual impairment since birth and uses an electric scooter.
Matula noted that students aren’t open about acknowledging disabilities in general. “I think that puts unnecessary burdens on students with disabilities,” she said.
Hornbuckle also explained how the campus culture responds to Princeton’s rigor. “There’s a sense that if you can’t cut it, you shouldn’t be here,” she said, adding that life at Princeton can be “isolating” for disabled students.
She noted that students with disabilities can also have trouble finding support from their classmates. “Most Princeton students haven’t experienced significant hardships in their lives, and it’s just difficult for them to understand how trying harder doesn’t necessarily result in success for everyone all the time,” she explained.
“Even well-intentioned people don’t understand and don’t make an effort. They don’t have comparable experiences,” she said.
Student opinions about the administration’s accommodations for the disabled differ.
“[Something] like reduced course load wasn’t anything I ever needed,” Matula said.Instead, mobility around campus was Matula’s priority. “Once I knew I was coming here, I was taken around to my dorm and the buildings I would probably have my classes in,” she said. “Other universities might not know how to deal with accommodations, saying, ‘Oh, you have to deal with that yourself.’ Here, that’s definitely not the case.”
Yet students grappling with other medical or cognitive disabilities said they may face difficulty when working with the University to arrange accommodations beyond basic needs. The University makes no exception to its course load minimum of three classes for disabled students.
This academic policy is not subject to change by ODS. “There are essential elements of a Princeton education,” Tominey explained. “I can’t change what a Princeton education is. That’s an academic decision.”
The goal being granted a Princeton degree necessitates these requirements, Tominey explained.
“At the heart of our philosophy is the belief that the course structure is an essential element of a Princeton education,” she said in an e-mail. “As part of a comprehensive approach to a liberal arts education, we expect the full engagement of our students as members of an intellectual community, and our degree program assumes a common experience of full-time residential study.”
The process of seeking accommodations can put excess stress on some disabled students, Hornbuckle said. “Dealing with fatigue and exhaustion and then having to meet with four different administrators ... [to whom] I’d have to lay my soul bare, my entire medical history ... I just think it’s an undue burden.”
Still, Hornbuckle said, University administrators have made an effort to assist her. “Everyone is very nice; everyone seems to want to help,” Hornbuckle said. Despite their support, she explained, there seems to be an “unmovable wall of tradition that is very difficult to change. I had no idea that Princeton was behind in providing services.”
“I wasn’t sick when I selected Princeton. I wish that I had [looked at disability services] because I might have chosen differently,” Hornbuckle added.
As University policy is based on the federal Americans with Disabilities Act, the recent Amendments Act signed into law in September 2008 will require the administration to take another look at current policies. “All the Ivy League [disabilities services] directors are getting together to meet about it,” Tominey said, adding that she met with Harvard’s director on Monday.
It remains unclear whether there are any changes on the horizon for disabled students. “What I will say is that the University is assessing its policies in light of the amendment,” University spokeswoman Cass Cliatt ’96 said. “It would be premature to say what, if any, changes there would be.”
Tuesday, February 24, 2009
Princeton University reports lowest number of students with disabilities in Ivy League
From Princeton University's student newspaper, The Daily Princetonian: