Silently Disabled: The everyday struggles of those with invisible disabilities

Jed Moch/Daily
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BY JENNA SKOLLER
Magazine Staff Writer
Published January 19, 2010

LSA junior Claire Abraham has been in a wheelchair since she was four. At 18 months, Abraham was diagnosed with spinal muscular atrophy — a neuromuscular disease that essentially breaks down her motor neurons and weakens her muscles, severely limiting her ability to move on her own. Despite these limitations, Abraham is now in her third year at the University, living in a residence hall on Central Campus.

Though Abraham currently lives on her own, it hasn’t always been that way. For her first two years at the University, Abraham commuted to Ann Arbor each day with her mother, Stacy Abraham, who helped her adjust to life as a college student with a disability.

The Abrahams said that, in her three years on campus, Claire hasn’t encountered much adversity, and that students have generally been glad to help — they will assist Claire by pushing buttons she can’t reach or isn’t strong enough to push and will open doors for her. Some students will, however, when in a hurry, let a door slam into Claire or only open one door, leaving her in a vestibule unable to get through the second door. “But for the most part, a lot of people are very aware of her chair and they’ll try to go out of their way or (apologize) if they didn’t notice to get the door for her,” Stacy Abraham said.

Though Abraham’s experience is often what people think of when it comes to those with disabilities, there is a larger group of disabled students on campus who deal with similar struggles but of a completely different nature. For these individuals, whose disabilities are considered ‘invisible’ — those that aren’t first apparent to the general observer — the struggle lies not only in coping with their disabilities, but doing so in a world that doesn’t know they’re sick.

Stuart Segal, interim director of Services for Students with Disabilities — a University organization that offers assistance to students with various types of disabilities — said there are about 1,200 students currently registered with SSWD. The majority of these students, however, aren’t visibly disabled. They have invisible disabilities — mental and chronic health conditions, traumatic brain injuries, pervasive development disabilities like Asperger’s syndrome and visual and hearing impairments. And though the majority of students registered with SSWD have invisible disabilities, to the University community these may appear less common simply because they are unseen.

Though Abraham says she has been well received and accommodated while at the University, many students registered with SSWD who have invisible disabilities shared different opinions. Many expressed feelings of isolation and stressed that further efforts need to be taken — like peer support groups or mentorships — to improve the experience of students on campus with invisible disabilities. Others said, however, that what truly needs to be done is to increase awareness for students with all types of disabilities, not just visible ones.

LSA sophomore Candyce Hill suffers from albinism, a disease that results from a lack of melanin pigment in the eyes, skin and hair. For some, albinism can be a visible disability, but for Hill, the disease is invisible. The albinism significantly affects Hill’s eyesight and her ability to read small print, but to the University, Hill simply looks like she has blonde hair and fair skin.

“I think the problem is that when (someone) looks at a disability that you can see — someone walking on crutches or someone who’s completely blind — then it’s almost as if they know that they have to be sensitive and they really don’t have a choice,” Hill said. “But when it’s not something you can notice right away — and in fact if they never told you, you might never know — it’s almost like they get the sense that it can’t be that bad.”

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When Beth Becker began her masters program at the University in 2006, her primary concern was, like most, academic success. But less than a year after moving to Ann Arbor, Becker was diagnosed with an uncommon, yet severe, disorder called Wegener’s granulomatosis — an autoimmune disease that damages the lungs, kidneys and other internal organs. Since the disease only affects internal organs, the condition is not visible to the public. But the symptoms of the disease and the results of Becker’s treatment are significant.

Because of her illness, Becker sometimes loses her voice and suffers from sporadic memory loss, making it difficult for her to participate in class. And while she was rarely absent before the diagnoses, Becker is now forced to miss class for extended periods of time to receive treatments that often require days of recuperation.

Throughout her time at the University, Becker has struggled to deal with limitations from her disease that negatively affect her academic performance. For example, though she would like to avoid taking narcotics to stay active in class — the pain medication she takes makes her lethargic and unresponsive — the effects of doing so are often debilitating.

“It could be finals week. It could be the first day of class,” Becker said of when her symptoms flare up. “It’s really completely unpredictable, which is, I think, one of the hardest things about having a chronic disease at school.”

Because of her disability, Becker has been forced to redefine her metrics for success. Getting an ‘A’ on an exam or a paper is no longer a top priority for her. “One day it might be getting out of bed, the other it might be submitting a paper for publication,” she said. “I think when you’re dealing with a chronic illness or a disability, your definition of success can change from day-to-day.”

Though Becker has attempted to restructure her life, and expectations, with consideration of her disability, she has found it difficult to do so in a setting as competitive and academically rigorous as the University.

“(It)’s hard to (redefine success) when you’re in an environment that has a very strict definition of success,” Becker said. “And that (definition) is productivity. So, when you can’t be productive, you feel unsuccessful. And that’s hard.”

Like Becker, many of the students registered with SSWD are only recently disabled. Some were diagnosed with the disability shortly before coming to the University; others were diagnosed well into their time at college. For those with new disabilities like Becker, learning to accept new limitations is often difficult and unwelcome.

“It was a huge adjustment going from a high-achieving, healthy student who could do what she wanted to being limited by this disease and its effects and its medications,” Becker said.

To help with this adjustment, the University does encourage professors to allow certain academic accommodations for students registered with SSWD, like extra time for exams, extensions for class assignments and additional excused absences. However, many students feel uncomfortable asking for these accommodations.

Rackham graduate student Leslie Rott said that during her first year at the University, she seemed to wake up every day with a new and unfamiliar symptom. But despite undergoing multiple diagnostic tests, no one could initially pinpoint the cause. It wasn’t until a week before the end of the academic year that she was diagnosed with rheumatoid arthritis and lupus — a chronic inflammatory disease that attacks the body’s tissues and organs.

Rott said she was unsure of what accommodations she would be entitled to going into her second year. Unlike those who have lived most of their lives with disabilities, she had no previous experience as a disabled individual and didn’t even know how to go about asking for accommodations.

“A part of it, too, is that, at least in my case, I’m asking for help and accommodations that I don’t want to be asking for, that I never thought I would have to be asking for,” she said. “So it’s really difficult to actively try and do this yourself.”

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Recent University graduate Anna Lembryk was diagnosed with lupus during her junior year of college. In addition to academic accommodations, Lembryk has had to deal with the social aspects of her disability. Her condition requires her to sleep more than the typical college student. She goes to bed around 10:30 p.m. every night and takes a half-hour nap every day — a sleep schedule that often places a burden on her social life.

LSA sophomore Anna Clements has to deal with similar issues. Clements was in a car accident at the end of high school that resulted in a traumatic brain injury, which caused memory loss and depression. And while most students can procrastinate and pull all-nighters to catch up with work, Clements can’t stay up late to study or write papers because her “brain just doesn’t function” if she is exhausted.

“I have to be really good with not only time management, but also energy management. And so I have to gauge the number of the hours in the day that I have energy, and I have to get everything important into those hours,” she said. “When I use my energy on socializing or going to the gym — things that are completely fine for most people — for me, it’s now that my energy is gone.”

LSA junior Robbie Dembo first began experiencing chronic back pain during his freshman year at the University. The pain severely impedes his ability to walk even short distances, forcing him to drive everywhere he goes. Dembo said this not only affects his studies, but like Lembryk and Clements, his social life as well. In addition to taking a lighter course load, which means he might not graduate in four years, Dembo said he must cope with having to say “no” to his friends when they invite him to do something he can’t do because of his physical limitations.

“I want to be able to tell people who say like, ‘let’s go to this party’ (that) ‘I can’t walk far because I have limitations,’ ” Dembo said. “I want to be able to say that, and I want them to turn around and be able to say, ‘OK, I understand that. Let’s find something to do closer by.’ ”

Despite the difficulties of the disability itself, Dembo said one of the hardest things he has to deal with is coming to terms with his disability in a community that, he says, is not always tolerant of those with limitations. He said because his disability isn’t immediately visible, people judge him when, for example, he has to take the elevator up only one floor because he can’t walk up stairs.

Becker echoed this sentiment, stressing the difficulty of having an invisible disability in an environment that often fails to recognize the disabled community as a whole.

“I think one of the biggest challenges for students with disabilities or illnesses, is when they’re invisible,” she said. “You know, when I get on a commuter bus, it’s hard for me to say, ‘Can I have your seat?’ just small things.”

Unlike issues that are widely discussed, like race, religion and sexuality, a discussion about disabilities is often ignored. Students like Dembo and Rott say the support that exists for students with disabilities is simply not adequate.

Rott noted specifically the difficulties of having an invisible disability at a university she says is not widely knowledgeable about disability issues in general. She emphasized the trouble of finding her niche at the University when so many of her peers are unaware of her condition.

“It’s not something that you advertise,” Rott said. “So it’s sort of hard to try and navigate feeling like I’m part of my program and part of my department when 95 percent of those people have no clue what’s going on.”

Rott said she wishes there was more education at the University about disabilities, similar to the way issues of race and sexuality are often discussed. Rott proposed creating networks where students with disabilities could come together and communicate with one another. “There are invisible illnesses that can be physically and emotionally debilitating that people at this University have, because I guarantee that I’m not the only person that is facing these medical changes,” Rott said.

This emotional distress that disabled students experience is a commonality that some believe should be used to unite the community.

“One thing that I think does bring people together is the fact that people of all disabilities are stigmatized,” Dembo said. “There’s taboo. People feel uncomfortable about someone who is blind and someone who is mentally retarded and someone who is in a wheelchair.”

To help cope with these issues, many disabled students, like Dembo and Rott, feel that emotional support, whether it be a group of peers or a mentorship, could prove extremely helpful.

“I think a support group would really be useful, especially in my experience,” Rott said. “Even if the illnesses are different, a lot of the emotional work is very much the same, and a lot of the experiences — unfortunately most of them negative with trying to disclose your illness at work and in relationships — all of these things, are very similar across different illnesses.”

Other students, like Engineering junior Jeff Haenke, who suffers from anxiety and depression, discussed the possibility of mentors who could help with the process of adjusting to academic life with a disability.

“A mentor would be really helpful, someone who I could refer to, maybe someone who is knowledgeable in the field,” Haenke said. “They can tell you it will be alright, or you need to study more for this.

Sometimes finding the emotional support disabled students crave can be difficult, though, because finding support means a certain level of vulnerability that many students, particularly those who are newly diagnosed, are not ready for.

“Even though people are really trying to reach out and find that emotional support, I think sometimes it’s really hard especially if you’re newly diagnosed to be willing to put yourself out there,” Rott said.

LSA senior Maggie Felder suffers from rheumatoid arthritis and Crohn’s disease — a disease that inflames the intestines and typically causes abdominal pain, weight loss, vomiting and diarrhea. She requires a solid night’s sleep as well as a daily nap, sees seven doctors on a regular basis and must give herself shots. And, while most college students spend extra money on going out or new clothes, Felder has to spend more than $100 out of her own pocket each month for medication.

But what helps her get through her illness is her support group, started by her University Hospital doctor several years ago.

“They are so wonderful,” Felder said. “We meet once a month and it’s professors and students and grad students and my doctor from the University. It’s a great way to say, ‘Hey I’m having these issues with sleep, is anybody else having these issues? Is it normal?’”

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The stigma that so often accompanies a disability is a major reason why so many students with invisible disabilities make the decision not to disclose their limitations to the majority of their peers, believing that as soon as people are aware that they suffer from something out of the ordinary, they will be treated differently or judged.

Though many of these students aren’t visibly different from the people they pass on the street, their disabilities may require actions or behaviors that seem strange when unexplained, which often leads other students to judge them unfairly.

Lembryk, for example, must carry an umbrella and wear sunglasses and a scarf when it’s sunny due to the severe photosensitivity she has as a result of her lupus.

“It’s annoying. I wish I could just tell people, ‘Hey, you know, there’s a reason that I do this. Do you think that a sane person would be carrying an umbrella when it’s 70 degrees outside and beautiful?’” she said.

Felder, who is fairly upfront about her Crohn’s disease, says that despite her attempts to inform her classmates about her disability, she has received less-then-ideal reactions as sometimes, students “literally scoot their chairs away” when she talks about the disease in class.

There is also, at times, the issue of other students thinking accommodations means disabled students are getting “special treatment.” For example, LSA sophomore Sarah Rabinowe, who was diagnosed with two learning disabilities in the beginning of elementary school, said her classmates often judge her for getting accommodations because they don’t understand how difficult it is to live with her disability.

“I’ve had a little bit here of ‘she gets special treatment, she gets this,’ the sort of jealousy, almost, because they don’t understand how hard it is to live with this,” Rabinowe said.
“Just from them not understanding that with every accommodation comes a million other things I do on my own in order to make that accommodation so minor actually when you look at the way my life works.”

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Though some members of the disabled community would like the University to take a larger role in advocating for and raising awareness of disabilities on campus, SSWD “acts under a philosophy of self-advocacy,” Segal said.

“In other words, part of what we’re trying to do is turn people into young, responsible, independent adults, and part of the way of doing that is making people advocate for themselves,” Segal said.

Part of this notion of self-advocacy includes changing the campus’s perception of the disabled community without the University’s help. For example, if individuals want peer mentors or support groups, it’s their responsibility to make that happen. Likewise, if individuals sense a stigma associated with disabilities on campus, the disabled community must find a voice within itself to raise awareness of disability issues rather than rely on the University to make this change for them.

“There’s a lot of people who have very mixed feelings about that,” Segal said. “Some are really eager to take that on and thrive on the responsibility and independence, and they really grow. Others are really sort of resistant to it and really wish that we would do more for them.”

Dembo would be an example of the former. He has already taken steps to catalyze a more open discussion of disabilities on campus through Inter-group Relations, which he says helps “create a dialogue of people with different ability identities.”

“Because even in academia, a disability is considered a minority or a group that is oppressed, but there is not a lot done to discuss the issue,” Dembo said. “On this campus, there’s a lot done discussing race; there’s a lot done discussing sexual orientation and attractionality, religion. But there’s not a lot discussing ability. And that’s something I’m trying to bring some discussion.

“This is an issue that affects everybody, no matter your disability status, and I think everybody needs to get involved in first, recognizing what problems exist,” Dembo said. “But there needs to be something that gets everybody together, not to unify people for support, but to make this organized.”