Duke University Alumni Magazine

Special-Needs Students
by Bridget Booher
Photographs by Chris Hildreth

Friends and fellowship: At a going away party for a fellow member of the Cambridge Christian Fellowship, Grimsley looks through a friend's photographs

As disabled students enroll in greater numbers at colleges and universities, they are discovering services and accommodations that didn't exist even five years ago. But they are also encountering misperceptions about their capabilities.

nside the cluttered two-bedroom apartment on Central Campus, pizza boxes, soda cans, and unfolded laundry are stacked up in the kind of haphazard order endemic to college students. The Blue Devil clock on the wall reads 8:45 a.m., and sophomore Will Grimsley is running late. He was up till dawn working on a presentation for his afternoon biology class, and right now he's trying to gather everything he needs for his marathon Thursday, which begins in a few minutes with a history class on "War and Peace" and ends at dusk, when his "Ecology and Society" course concludes.

Pulling on a knit ski cap and grabbing his backpack, Grimsley hollers a farewell to his roommate and wheels himself out of his dark home into the bright light of a cold November morning. Diagnosed at birth with cerebral palsy, Grimsley has spent most of his adult life in a wheelchair, and he has become quite adept at navigating himself from place to place. In the parking lot, driver Marlos Uzzell waits next to a wheelchair-accessible van that transports Grimsley to class. With the flip of a switch, Uzzell lowers a platform that allows his passenger to roll into place. Another button activates the platform to raise its occupant into the van. Uzzell makes sure that Grimsley's chair is securely strapped down before guiding the van onto Anderson Street and heading toward West Campus. Uzzell shepherded Grimsley around last year, too, and the pair have established an easygoing rapport. Talk turns to Christmas family photos and Duke's performance in the Maui Invitational basketball tournament. At the back of thepsychology building, Uzzell unloads Grimsley and they share a high-five handshake before parting.

"Later, dude!" says Grimsley.

"Learn something today, okay?" replies Uzzell.

Grimsley is a well-known figure on Duke's campus. While his wheelchair serves as a distinguishing visual identifier, it's his spirited personality that has won him admirers across campus. He was a March of Dimes poster child when he was four, but Grimsley's physical limitations are merely one small part of who he is. His friends know him as a Civil War buff, a devout Christian, a polite Southern boy, and a die-hard basketball fan. And if he is the first peer of theirs who travels by wheelchair, the odds are good that he won't be their last.

At the start of the fall semester, Grimsley was one of ninety-one undergraduates identified as disabled, a population that also includes those with learning and emotional disorders. According to a 1996 survey by the American Council on Education, the proportion of college students with disabilities has tripled since 1978, from 3 to 9 percent. As these students enroll in greater numbers at colleges and universities, they are discovering services and accommodations that didn't exist even five years ago: door-to-door transportation, specially designed computer equipment, and individually tailored academic modifications. But they are also encountering persistent obstacles: misperceptions on the part of faculty and fellow students about their capabilities, inaccessible buildings, and administrative decision-making that can be well-intentioned but misguided.

Providing these special-needs students with assistance is more than just a moral imperative. With the passage of the Americans with Disabilities Act (ADA) of 1990, it's also the law. Like its peer institutions across the country, Duke is scrambling to comply with ADA mandates. That means conducting audits of what's already been put in place and mapping out what remains to be done. It means long-range planning and financial commitments from across the university community. And it means learning from successful initiatives and from the consequences of inaction.

"My first instinct is to say we've been playing catch-up somewhat," says Diane Alexander, Duke's coordinator for students with disabilities. "Other schools like Emory, Dartmouth, Harvard, and Stanford have very strong disabilities offices. We have always provided for our disabled students, but it's happened by pulling together resources from over here or over there. It has not been a centralized effort; it has come together through the goodwill of a lot of different people."

Given the complexity of the ADA, the enormous costs of upgrading campus facilities and hiring professional staff, and the widely varying needs of individual students, dozens of institutions have been slapped with lawsuits or complaints for failing to follow the letter (and in some cases, the spirit) of the law. Violations range from asking improper questions about disabilities on admissions forms (Johns Hopkins, Georgia State University) to dismissing student requests for legally mandated accommodations (Boston University).

Given Duke's Gothic architecture and often uneven natural terrain, bringing the university into ADA compliance is more complicated than retrofitting a few buildings. Still Duke has been working diligently to make the campus an inviting place for the disabled population, which includes students, staff, and visitors. Wheelchair ramps and lifts can be found across campus; elevator buttons, water fountains, and phones have been lowered; heavy, narrow doorways have been replaced with automatic openers and wider entry ways; bathrooms have been renovated for handicapped access; special strobe lights and amplified fire alarms have been installed in living spaces for hearing-impaired residents; many building and classroom markers are in Braille; elevators have been, or will be, installed in older buildings; in some facilities, fixed seats have been replaced with removable chairs; and within the next four years, the university's entire transit fleet will be wheelchair-accessible. A campus map indicating which buildings are partially or completely handicapped accessible is in final production.

Onward and upward: Forced to enter most buildings through side or back entrances, Grimsley circuitously wends his way to class

And then there are the special modifications for those diagnosed with learning disabilities. Depending on the documented nature of the disability, accommodations might include one or more of the following: extended time to complete quizzes, exams, and assignments; separate administration of tests and exams in a quiet place; permission to use a calculator during tests and exams; permission to use a tape recorder for class lectures; and the availability of auxiliary aids such as recorded textbooks or student note-takers.

There is also an ADA compliance task force. It has representatives from various offices around campus--admissions, facilities, transportation, the medical center, human resources, the graduate and professional schools, student affairs, and the provost.

These initiatives do not come cheap: Improvements to Central Campus sidewalks, including ramps and curb cuts, cost more than $23,000. Renovating the admissions office to include new doors, entryway ramps, and a handicapped-accessible bathroom cost about $100,000. Until about five years ago, handicapped patrons attending events in Page Auditorium had to be let off at the unsightly West Campus loading dock. Now, they can gain access from the Bryan Center parking lot and through a side door to Page. Cost: $100,000.

Despite the revamping of physical spaces and academic assistance, no one will claim that the university is ahead of the game when it comes to ADA compliance. About a year and a half ago, a student filed a complaint charging that Duke had not done enough to make the campus accessible. Administrators are now negotiating an agreement with the Department of Justice, which has issued a recommendation report on how the university should address its ADA shortcomings. Like all institutions, Duke is required to conduct self-evaluation audits and transition plans for complying with ADA (and before that, Section 504 of the Rehabilitation Act of 1973). The recent complaint, says Vice President for Institutional Equity Myrna Adams, focuses on whether or not the university has made reasonable and adequate progress.

"We have met our obligations," she says. "Many curb cuts have been made, parking facilities have been established, telecommunications facilities have been installed. But we're not where we need to be. We need drinking fountains and telephones at a height where wheelchair-bound people can access them. We know that East and West Duke buildings, where we have many public arts events, are not accessible. But if you look at this [Justice Department] report, it covers every single building, including the Children's Campus and the Washington Duke Inn."

Mobile companions: Grimsley and driver Marlos Uzzell, center, have forged a friendship that began in the fall of 1996

Given the scope of the problem, says Adams, grievances are almost inevitable. The Duke complaint, and many of those filed around the country, are undertaken with the intent of being instructive or corrective rather than punitive. "Legal complaints are one of the major tactics people use to get institutions to change. On the one hand, this does give us the rationale for spending money at a time when it's in short supply. When an external agency is ordering you to comply in specific ways, it speeds up the process. These are things that we would certainly be doing in due course anyway; this just compels us to move more quickly."

ack at the psychology building, Will Grimsley encounters an impediment. Someone has left a garbage can in the middle of the sidewalk ramp. Without slowing down, Grimsley aims directly toward the offending item and using the feet plates of his wheelchair, shoves it off to one side. He pulls open the heavy wood door and makes his way to the ground-floor elevator, which then takes him up to his first-floor classroom. Finding the occasional obstruction in his path is not uncommon--"When that happens, I just want to get it out of the way as quickly as I can," he says--but other complications are more annoying. Later in the day, an elevator in the Levine Science Research Center (LSRC) fails to respond to his call. Worried that his driver has been waiting too long, Grimsley doubles back at breakneck speed to find one that's working.

"I think that there are a lot of things that could be improved here," he says. "I would like to see every single dorm on East and West have some sort of ramp so I could get into them. And they need to patch up the [flagstone] walkway on the main quad. But for the most part, it's pretty good. I really have to applaud the transportation folks, too. I can call and give them my schedule and they'll take me where I need to go."

Although he is reluctant to call himself an activist for the disabled population, Grimsley has been known to go directly to the appropriate administrator when he finds something that could be improved. His freshman year, he took the director of facilities on a tour of East Campus, pointing out the many deterrents to easy maneuverability.

Like Grimsley, junior Lenore Ramm says she is mostly pleased with Duke's willingness to help meet her needs, but that she often finds it easier to go directly to the person in charge of a particular problem. "When I transferred here last fall, I had to search out the right people to talk to," says Ramm, who uses a wheelchair because of a condition called osteogenesis imperfecta, which has rendered her bones extremely fragile. "When I have a problem with doors, I'll deal directly with the lock shop. Or if I need to have a class location moved, I'll deal directly with the registrar's office. I've had to push a lot, but I guess that's understandable."

University administrators agree that the former decentralized structure of providing services to special-needs students could be frustrating. As the number of students with disabilities began to grow, it became clear that a more coherent approach was needed. Currently, all services are channeled through the Academic Skills Center, which includes disabilities services for undergraduates. Later this year, the university will establish an official Office of Disability Services, which will collaborate with the disability staff of the Academic Skills Center. Geared to students, faculty, and staff, the office will also address issues of public accessibility. A national search is being conducted for a senior-level director, who should be in place by the start of the 1998-99 academic year.

In the game: Grimsley warms up before basketball class begins

or those familiar with issues relating to the disabled, such steps are seen as simply fulfilling an obligation. Certainly no one would suggest that the Will Grimsleys of the world shouldn't have the same chance to pursue a degree in higher education as their able-bodied classmates. But in some quarters, students with learning disabilities are viewed with suspicion. People with such "hidden disabilities" are often reluctant to disclose their disorder, or are met with skepticism by those who think that "learning disability" is merely a euphemism for laziness.

Such an attitude landed Boston University in hot water when then-provost (now president) Jon Westerling implied that such students fabricated their conditions. Without any medical expertise or understanding of the range of learning disabilities, Westerling referred disparagingly to a student, "Somnolent Samantha," who needed special considerations because she was prone to falling asleep in class. (It was later revealed that no such student existed, nor was there any student at BU whose symptoms remotely resembled Westerling's narcoleptic example. In federal court, BU was found guilty of violating federal disability laws and ordered to re-examine some of its policies.)

Junior Maria Roberts is a fairly typical learning-disabled (LD) student. After excelling in high school--top grades, numerous extracurricular activities--she immediately ran into trouble her freshman year. She signed up for chemistry, calculus, and geology, but no matter how much she studied, she found herself performing poorly on tests. "I went to my professors all the time, sat in the front row, asked lots of questions--I was obnoxious, I was trying so hard," she says. "But it didn't seem to make a difference." For the first time in her life, she made C's, and she even contemplated transferring to another school. When she discovered that her first-year roommate, who had been diagnosed with a learning disorder, had improved her academic performance following the diagnosis and treatment, Roberts decided to investigate.

But it wasn't until the second semester of her sophomore year that she was tested. Roberts says she was reluctant to seek help because of the high costs of testing ($600-700, which her insurance eventually covered), and because a teaching assistant she confessed her worries to dismissed the premise as absurd. When the results came back, Roberts was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), characterized as a severe difficulty in focusing and maintaining attention.

"I think I've probably had this for a long time, but in high school you're not required to spend a lot of time on any one thing. You jump around from one thing to the next. But when I got to college and had to spend two to three hours on one subject, I just couldn't do it. I became extremely frustrated and anxious because I'd always done well, and suddenly I wasn't. I felt stupid."

Point person: Teammates look to Grimsley to run the offense, far left

Working with the Academic Skills Center, Roberts was able to get extra time for tests, and to have a private room for taking exams. Her counselors have taught her study skills and time management techniques, tools that have helped her become a more focused student. (The center provides this service to all students, not just those with LDs.) She says her professors have been uniformly responsive to her needs, even offering arrangements she declines, such as additional time for writing papers. Her grades have improved, but more importantly, she's learned how to comprehend and retain material in a more structured, reliable fashion. And she's regained her sense of confidence and purpose.

Despite her clear excitement about identifying the source of her difficulties, Roberts asked that a pseudonym be used for this story. "All my friends know, my family knows, and my professors know. But I just don't need other students finding out about it and thinking that I'm getting some kind of break. Duke is competitive enough. The way I see it, having these accommodations puts me on the same playing field as everyone else. There are a lot of people who don't believe in learning disorders. I've had people tell me, 'You can't have a learning disability, you go to Duke.' But once they get to know me, and learn more about LDs, it's like, 'You are so ADHD!' "

Disabilities coordinator Diane Alexander points out that the requests received by the Academic Skills Center are all "carefully documented and carefully reviewed by the clinical director. It's not just someone walking in off the street and saying, I need all the time in the world to take this exam. And requests for accommodations are not outrageous; it may be extra time to complete an exam, or for a low-vision student, extra time to conduct research. A learning disability doesn't have anything to do with lacking intelligence; it has everything to do with the way students process information."

The university has formal procedures for identifying and assisting all students with learning disorders even before they arrive on campus. For the first time last fall, all students accepted to the university received a special form with their admissions materials soliciting information from those who qualify for ADA accommodations. Once the form and appropriate documentation are returned, they are forwarded to Kathryn Gustafson, clinical director of the Academic Skills Center, for review. Gustafson or Alexander meets with the student, and letters are sent to the student's academic dean requesting specific accommodations. The dean then notifies the faculty of the student's needs, and the student receives a letter reiterating the agreed-upon accommodations that he or she is eligible to receive. Students are also encouraged to maintain open lines of communication with faculty members regarding their particular needs.

"These students just want to be like everybody else," says Gustafson, an assistant professor of psychiatry and behavioral sciences. "We treat the information with utmost confidentiality and request that the professors do the same. Some of these students were diagnosed when they were young children and some weren't diagnosed until they started college. Regardless of when that diagnosis was made, these are very successful, very intelligent students. If they weren't, they wouldn't be at Duke." (It is against the law to solicit information about disabilities in admissions procedures.)

Day's end: Returning to his apartment, Grimsley looks forward to catching up on his sleep

The Academic Skills Center's consultant and former clinical director, Mary Francis Peete, helped pioneer services for disabled students at the university, beginning in 1984. She concurs with Gustafson that LD students differ only slightly from the larger Duke student population. "They've gone on to medical school, law school, graduate school. Mostly, students function with very minimal accommodations. It may just be that they are given time-and-a-half to complete a test, or they need help learning how to make the [academic] transition from high school to college. And not every student who qualifies as LD asks for accommodations."

Of the ninety-one students identified with disabilities this fall, sixty-seven were diagnosed with learning disabilities or attention-deficit disorders--including sixteen first-year students. Six declined to ask for accommodations. Twenty-four students had documented physical or emotional disabilities, and three chose not to ask for accommodations.

For students like Angela Earhart '97, who is deaf, educating others about living with a medical condition is not inconsistent with blending in. "It was always a main objective to show the faculty and students that I was just like the other students and to treat me as normally as possible. I make an effort to make people feel as comfortable as possible and realize that I do not view my deafness as a disability. I found that it was helpful to be as open as possible and be available for questions. People are always so intimidated to ask and discuss any handicap. I really wanted to teach them that it's okay to be curious, and within time they forgot I was even deaf."

Earhart, who had interpreters throughout her Duke career, even taught a house course, "An Introduction to American Sign Language and Deaf Culture." She is now a research technician in the department of molecular physiology and biophysics at Baylor College of Medicine, and is in the process of applying to medical schools. She says she hopes eventually to pursue a career in primary-care medicine with a special emphasis on caring for the deaf population.

Since Earhart graduated, there have been steady improvements both to the campus' physical landscape and its administrative support network. Unlike Earhart's freshman year, when there wasn't even a main clearinghouse to oversee disabled-student requests, physically- or learning-disabled members of the Class of 2002 will be able to flip open the Duke directory to find a central office devoted to their needs. Plans are on the drawing board for putting elevators in East and West Duke, so that physically disabled students interested in taking art history courses won't have to request that class locations be moved to accommodate them. And a $25,000 proposal has been submitted to the provost from university librarian David Ferriero and associate librarian Margaret Brill for improving library services for the disabled. The plan calls for improvements in assistive technology, such as adding a closed circuit television electronic magnifier and a Kurzweil reading machine; specially designated work spaces; additional staff assistance to help meet and identify the needs of disabled users; and explicit policies describing what the library can provide.

ight has begun to fall and Will Grimsley is back at his Central Campus apartment. Like his classmates, he looks back to a day full of small victories and familiar routines. In basketball class, his "skins" team beat the "shirts." The biology presentation he'd labored on all night was well received. Now, he checks his post office box (there's only junk mail) and speeds down the sidewalk. It's easier coming home; it's downhill. He unlocks the door to his apartment, lets himself in, and checks his phone messages. A high school teacher is checking in to see if they're still on for dinner. Later, Grimsley will try to catch up on his sleep.

It's just another day in the life of Will Grimsley. The deterrents that he considers minor annoyances seem daunting to those of us who take our mobility for granted. What's important, say people who work closely with disabled students, is that we not only identify and solve the problems that impede their physical and professional progress, but that we also work to recognize and appreciate the lifelong challenges they face.

"We need to be aware that there's a percentage of our student body whose needs are different from other people and be sensitive to those needs," says Diane Alexander. "It isn't that we have an overwhelming number of students, but even if we have just one, we need to meet that need with the right spirit--willingly, happily, glad to do it."


Price: "There are many, many places I simply do not go"
Photo: Les Todd

On those occasions when English Professor Reynolds Price '55 discovers that the aging elevator in the Allen Building is malfunctioning again, he has to ask for help getting his wheelchair up the stairs to his third-floor office. "It's really not that hard," says Price. "One or two strong people can do it."

But about a year ago, the two campus police called upon to perform the task thought about the prospect for a moment before one declared, "This is not in my job description," and walked away. His colleague promptly followed suit.

In a wheelchair since spinal-cord cancer in 1985 left him unable to walk, Price says that such incidents, while rare at Duke, serve to remind him of how far the campus--and the nation in general--still needs to go to assist the handicapped. "There have really been no hostile moments here," he says, "but there are many, many places I simply do not go. I have silently canceled out so many parts of the campus that are inaccessible that I'm barely even conscious of it anymore."

In addition to the uneven and often treacherous flagstone walkwaysĐa minefield for people in wheelchairs--Price says there are two recurrent situations that nag. Because the heavy wooden doors of the Allen Building are not automated, he has to sit and wait for someone to come along and open the door for him every time he enters the building. And when he wants to visit colleagues in the Union Building's second-floor Faculty Commons, he has to ride up in the garbage elevator.

On his many travels across the country for book tours and readings, Price has found that there is widespread ignorance about the handicapped population. "I don't think most buildings in America were built for people to live beyond the age of forty," he says. "They are not designed for people who are infirm or in wheelchairs." Even modifications made on behalf of the disabled are often inappropriate, such as wheelchair spaces in movie theaters that are situated on an uncomfortable incline.

When Price published A Whole New Life, the autobiographical account of his bout with cancer, he began receiving about twenty letters a month from handicapped readers who wanted to share their own experiences. "At first I was flabbergasted and happy that I'd helped people. But when I started getting requests to speak to groups, it reached a point where I had to decide whether I was going to be primarily a friend to the disabled population or a man who writes books. And I decided on the latter. I wasn't willing to become the John the Baptist of accessibility."

Price is quick to note that he has not been as active in pushing for better accommodations on campus as he should. "You have to stage your battles, and I've decided to let other, younger people fight those battles. I'm not proud of that. But if you're disabled and you get outraged at all the frustrations there are to deal with out there, you'd get so mad you'd have a stroke."

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