Non-apparent disabilities pose challenges to access
May 8, 2008 1:07 PM
In spring 2007, Rachel Bierach’s plan was to finish a bachelor’s degree in music from SF State.
When she collapsed from an acute asthma attack and landed in the hospital for three days, that plan started to derail.
“I’ve been through good and bad times with asthma symptoms, but it had never been this bad,” said Bierach, 21, who has lived with asthma since she was a toddler.
She tried to resume her schedule but couldn’t be on campus without shortness of breath and dizziness.
“It was totally out of control,” she said. “None of the medications worked.”
Further complicating the situation was the trigger for her attacks—Bierach was pregnant.
Her health, the health of her baby and the degree she had worked for years to earn became looming uncertainties.
She knew she had to put her health first, and that meant staying away from places that exacerbated her condition.
She went home, e-mailed her professors, and hoped for the best.
Students with health problems like Bierach’s are not uncommon at SF State. More than 800 people are currently registered with SF State’s Disability Programs and Resource Center.
The DPRC exists to ensure students with disabilities have equal access to education.
People tend to think of equal access in terms of wheelchair ramps, parking spaces, sign language interpreters or Braille study materials.
While all those things are covered through the DPRC, those aren’t the needs of most clients.
“About 75 percent of students registered have a non-apparent disability,” said Deidre Defreese, the program’s associate director.
Just as the term implies, such disabilities have symptoms that can be subtle or invisible to untrained eyes.
Many of these health problems fall into what the DPRC calls “systemic disabilities,” affecting the body’s respiratory, immune, nervous or circulatory systems.
Conditions with symptoms that are difficult to see can be difficult for others to understand, Defreese said. And lack of understanding can cause significant barriers to educational access for students with non-apparent disabilities.
Sometimes faculty will refuse to make accommodations because they don’t understand the student’s limitations, she explained.
“It’s not until we have a conversation about a student’s specific needs,” she said. “That they realize ‘Oh, there is another way I could do this.’”
Another way might be giving a student longer to take a test, being more flexible with deadlines or leniency for making up work after absences.
Defreese said part of her responsibility is to communicate students’ needs without compromising their right to medical confidentiality.
“Faculty don’t have a right to know what your medical condition is,” Defreese said. “But they do need to know that accommodations are for a disability and not just a personal preference.”
If severe health problems keep a student from completing course work even with accommodations, Defreese said, the DPRC can step in to control the damage to the student’s academic record.
“It might mean asking for an incomplete or assisting with a late withdrawal,” she said.
Although the registrar’s late withdrawal form asks students to detail their health problem, Defreese strongly counsels students against filling this section out.
“Who knows who’s going to read that file?” Defreese asked.
The DPRC is able to confirm a medical condition with doctors and give the registrar non-specific documentation that the late withdrawal is valid.
A policy requiring all class syllabi to include contact information for the DPRC was passed by SF State’s Academic Senate in late 2007.
While this change encourages Defreese, she said it doesn’t necessarily guarantee that faculty fully understand their responsibilities.
According to written instruction packets the DPRC provides to educators, that responsibility is relatively simple.
Faculty and staff should be available to discuss potential accommodations with a student and in appropriate cases, agree to specific methods of dealing with missed classes, assignments or exams.
The student’s obligation is to actively communicate with their professor to make them aware of problems and negotiate deadlines and schedules to make up work.
Some of the DPRC clients only need temporary help with note-taking or reading because of an injury.
Spring break or a particularly good snow season always adds a handful of people to the register, Defreese said.
“Or if the X Games have been in town,” she added, laughing.
But if a post-vacation parade of plastered appendages and the foibles of youth amuse her, the reality of the situation puts her back on point.
“People don’t always understand what it means to lose the use of your dominant hand,” she said. “It can completely ruin your ability to take a test.”
Defreese said she can’t help everybody. A student may wait too long to address a problem, or a certain class may require a heightened level of participation and can’t be adapted.
But her goal is to start a dialogue between students and teachers.
Not all people who deal with chronic health conditions like diabetes, AIDS, asthma, or seizure disorders think of themselves as disabled, she explained.
When faculty see a student struggling or missing classes, Defreese said, they may not feel comfortable asking a student about their health, but some know they can call the DPRC and ask them to intervene.
The difference between a student getting by or dropping out can depend entirely on communication, she said.
“I’ve learned to have the conversation first. You never know what people are willing to do until you ask,” she said. “People surprise you.”
In many instances, she said, students and teachers are able to work things out on their own.
“I see plenty of cases where faculty are accommodating students without ever involving us,” she said.
That was exactly what Rachel Bierach’s professors did for her when her asthma became debilitating and threatened her graduation plan.
She arranged to finish her degree on independent study.
“My professors were so supportive,” Bierach said, but added that it’s important to establish a good relationship before something goes wrong.
“If they already trust you, it’s going to make it much easier when you need help,” she said.
Bierach’s asthma stabilized after her daughter was born. A year later, she is back at SF State working toward a master’s degree in music.
Although she credits her professors’ support for her ability to graduate on time, she hasn’t always enjoyed the same understanding from other students.
“People smoke on campus, and it’s a big deal when you have asthma,” she said.
She’s given up asking people not to smoke near her, as they tend to ignore the request.
But she said if she thought they might listen, she would tell them this: “You don’t know it, but you’re making me sick.”
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