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Fall 2006 Table of Contents
Versión Español de este artículo (Spanish Version)

'This Is Who I Am'

By Diane Rogers (Reprinted with permission from STANFORD Magazine, published by Stanford Alumni Association, Stanford University.)

Abstract: This article describes the experiences of Liz Phillips, a blind college student at Stanford University. It provides information on accommodations for college students with disabilities, accessibility issues, study skills, self-advocacy, and the importance of a good sense of humor.

Key Words: Programming, blind, visually impaired, deafblind, disabilities, self-advocacy, accessibility, accommodations, assistive technology.

By the time he got to class, philosophy professor John Perry found only a bare plate. The chocolate chip cookies one of his students had baked were all claimed. What was a hungry ethicist to do?

"He was like, `Maybe I could steal a cookie from Liz without her noticing,'" says senior Liz Phillips, a blind student in the course. "I had a pretty firm grip on my cookie because I had a feeling he'd try something, but his hand swooped out of nowhere and took it. It was hilarious."

Hilarious? Indeed, Perry wasn't taking advantage of a student with a disability, but rather, making a point. "Liz and I have a pretty good relationship, so I like to occasionally exploit the fact that she's blind, to get other students used to being matter-of-fact about it," he says. "Besides, she has a nice laugh, and anything that gets students laughing early in the lecture helps them stay awake."

That level of acceptance, where professors and classmates can acknowledge a student's disability and then move ahead with the business of learning, is comparatively rare. In some classes, instructors aren't sure how to treat Phillips. "A lot of times people have a hard time seeing me," she says. "If I'm raising my hand and other people are raising their hands, they get called on. It's happened often enough that I don't think, `Oh, [that professor] must be having a bad sight day.'"

Phillips's solution? "I call out."

She also has to remind faculty to describe anything they put on the blackboard. In one class, "I constantly raised my hand and asked, `What did you write?'" she says. The professor "wasn't being mean, he just constantly forgot." After several days of reminders, the instructor finally said something like, "Oh, you need me to tell you what I'm writing?"

"Yup," Phillips replied. "I still can't see."

Phillips is one of almost 900 Stanford students who receive accommodations from the University's Office of Accessible Education. Their disabilities are diverse, falling into 11 main categories that range from chronic illnesses to learning disabilities, hearing impairments to psychological disorders. Their challenges may be academic, social, health- or mobility-related—or all of the above. Some need only occasional assistance: a student with severe food allergies may require access to a peanut-free dining hall, or someone with a broken leg may need rides to class on a golf cart. Others visit the OAE, on Salvatierra Walk near the Haas Center for Public Service, nearly daily. Phillips, for example, goes there to obtain books and tests in Braille, and training in assistive technology. In addition, she must often figure out creative ways to approach her schoolwork and advocate for herself in the classroom.

Stanford was Phillips's first choice of colleges because it is a research university—"and I do want to discover something." She was admitted early decision, and arrived a month before classes started her freshman year to learn her way around campus with her guide dog, Bonds. Four years later, getting to class is still a challenge, especially when the physical terrain changes unexpectedly. If Bonds walks under a piece of caution tape—he's smart, but he can't read—Phillips is liable to bump into a piece of construction equipment. When a familiar pathway is blocked by parked bicycles, she may take them out with an inadvertent swing of her backpack.

"Lots of kids don't think about blind people or people in wheelchairs, and they park all over campus," Perry says. "So occasionally I'll pick up an offending bike and throw it in the Dumpster."

Phillips met Perry when she was searching for a building on the Inner Quad and he stopped to ask if he could help with directions. Last summer, she received a grant from the office of the vice provost for undergraduate education to work with Perry on his "Philosophy Talk" radio show, researching topics that included dignity, suicide and the environment. "I don't know beans about global justice," Perry says. "But if somebody smart like Liz reads what's on the net and boils it down to 30 pages, I can sound like I know something."

Thanks to advances in technology in the past 10 years, Phillips can turn to the Internet almost as easily as a sighted student. Using screen-reader software, she reads by hearing, listening carefully as a synthetic voice pronounces the words on her computer screen. It takes time—most blind students hear about 300 words per minute, while a sighted reader typically processes 400 to 500—but it's faster than scanning material and printing it out in Braille.

When OAE director Joan Bisagno came to Stanford in 1996, the Disability Resource Center on the ground floor of Meyer Library was staffed by two people; they had one computer to run a screen-reading program for the blind. Today, the OAE's Student Disability Resource Center, which coordinates services for all students with disabilities, has a staff of five full-time professionals and eight part-time interpreters. The recently launched Schwab Learning Center, which provides services to students with learning disabilities and attention deficit hyperactivity disorder, employs three professional staff and 16 part-time tutors.

Similarly, Rosa Gonzalez, the University's compliance officer for the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, received four to five student grievances per quarter in the early 1990s. Most complaints were about physical inaccessibility—students couldn't get up the stairs of the Old Fire Truck House or onto the Marguerite shuttle, or couldn't take dorm trips. One decade and $10 million later, most physical barriers on campus have been removed. Ramps, power doors, elevators and accessible bathrooms have been installed in buildings with the highest academic and public use. Today, fewer students are filing grievances—typically two per year—and they usually concern academic accessibility.

The fastest-growing group of students with disabilities are those with diagnosed psychological or psychiatric problems, such as severe depression and bipolar disorder. Psychologist Alejandro Martinez, who directs the counseling and psychological services at Vaden Student Health Service, says that during the 24 years he has been at Stanford, he has seen a "significant increase" in the number of students needing psychiatric hospitalization and psychotropic medications. "In the past, there wasn't much that could be done for students who had psychiatric disabilities," he says. "But with the advent of accommodations for them, that's changing." Instead of leaving school for treatment or because of academic difficulties, "many more of those students are able to remain on campus."

Students work with OAE staff members to develop accommodation plans that meet their needs. Often, these plans combine technologies and strategies. For example, students with visual-processing difficulties might use the reserved computers in a lab on the second floor of Meyer Library to highlight words and sentences in bright colors or alter fonts, since changes in the presentation of text can improve their ability to distinguish written words. Many students with disabilities take 12 units per quarter, rather than the usual 15.

A blind student arrives on the Farm with a U-Haul's worth of equipment. He has a screen reader—Window-Eyes or JAWS—and often a scanner plus Kurzweil reading software. He carries a portable BrailleNote, which looks like a laptop and enables him to take notes in class. And he probably has a Perkins Brailler in his dorm room—a small typewriter with six keys that produce Braille dots.

To get an alternate-format textbook, the student provides a course syllabus to Lisa Sheftman, an alternate format and accommodation coordinator at the OAE, who contacts the book publisher. Once the student verifies that he is enrolled in a course, confirms that he has purchased a textbook and agrees not to distribute the electronic version to anyone else, the publisher transfers the electronic text to Sheftman, who has it converted to Microsoft Word, Adobe PDF files, digital audio files (MP3), Braille or whatever format the student prefers.

But an electronic version isn't always available. "It's a challenge if a professor requires a particular edition," Sheftman says. "Even though The Brothers Karamazov always ends the same way, the faculty may want a specific translation." Such textbooks can be translated into Braille, usually by an off-campus committee of specialists.

Alternate-format textbooks aren't ideal for all situations. When it comes to taking notes on an assignment or going back to look for quotes, Phillips prefers a more personable reader—ideally, a classmate. She will ask a professor to announce at the start of a course that she's looking for a reader, and she usually gets a number of responses. "Liz was someone I wanted to get to know better," says junior Emily Fletcher, who started reading with Phillips two years ago and has become a close friend. "When I'm taking a class, I really like to talk about the material, and Liz and I not only read, but we stop and argue and talk."

Bottom line: it takes a lot of time for blind students to read and review course materials. "In general, my approach is to use a [human] reader, or read in Braille, or listen to tapes or read online versions of texts. I use all of those in preparation for studying," says senior Tyler Dumm.

Then there are exams. Whenever Dumm takes a quiz, he launches an OAE-wide effort. Let's say Professor Green announces the quiz. She composes it and gives it to TA White, who delivers it—72 hours in advance, ideally—to Sheftman. While Dumm goes online to reserve an exam room at the OAE, Sheftman takes his quiz to the Braille Box, a windowless office in the basement of Meyer Library where Braille specialist Gay Baldwin and alternate format and accommodation coordinator Alice Wong transcribe it into Braille. Dumm takes the test at the OAE, then prints out his answers on 11-by-11.5-inch Braille sheets, which are returned to the Box. Baldwin or Wong "interlines" his answers, writing them out in pencil between the lines of his Brailled responses, and hand-carries the quiz back to the OAE. From there, it is returned to the TA, and finally to the professor. Just in time to start preparing for the following week's quiz.

Coordinating all these steps depends on meeting deadlines, and when a faculty member is late delivering a test to the OAE, Dumm says, it can throw everything off. "Sometimes you're frustrated: `Damn, this professor didn't come through.' But no worries. They're busy. I'm busy. We'll get there."

Dumm lost his sight to cancer as a toddler, then had his cancerous left leg amputated at age 10. A member of the board of directors of the Northern California unit of the nonprofit Recording For the Blind & Dyslexic, he is headed for an advanced degree and eventual career in physical therapy. This year, Dumm became the first blind student to enroll in Surgery 101, part of his sports physiology and rehabilitation concentration in the human biology major. While other students refer to a skeleton in the front of the room, Dumm feels the human bones given to him by co-instructors Ian Whitmore and John Gosling, both teaching professors of surgery. But the lectures also rely heavily on diagrams that are projected onto a screen—typically inaccessible to Dumm.

Enter the talented alternate format crew of the OAE. Baldwin already had provided Dumm with textured aluminum-foil reproductions of the brain for a psychology course, bringing in a pastry cutter from her kitchen to form a bumpy pattern that designated neural pathways. This time around, the specialists relied on Dumm's lab assistant for the course, Shelley Hou, '00, MA '03, who took the same surgery class several years ago and kept her notes. Using a Tactile Image Enhancer, which suspends teensy polypropylene beads in heat-sensitive paper, the formatting team created diagrams with lines of varying thickness to designate muscles, vessels and nerves in the chest cavity. Strung-together beads stood in for ribs.

Because he wears a prosthetic leg, Dumm says he's particularly interested in the way the human body works and he wants to get as much as he can out of the lab section, in which students dissect cadavers. "Shelley provides a verbal description of things that aren't really distinguishable by touching them, like colorations of tissues," Dumm says. "She also aids me physically in the dissecting process, guiding my hand when I'm using a scalpel to separate connective tissue attached to a muscle, or paring away some of the fat in the subcutaneous area." (Postscript: Dumm earned an A+ in the class.)

Liz Phillips came to Stanford hoping to minor in physics, and mastered the difficult Braille Nemeth code to study quantum mechanics and relativity. But she concluded it would take too long to get through school. "It was all about manipulating equations, and astronomy classes would have been impossible for me," she says.

Instead, Phillips focuses on philosophy, which she wants to teach at the college level. She found her passion in Philosophy 80: Mind, Matter and Meaning. "Have you ever had one of those moments when you can remember the exact second when something happened?" she asks, igniting a megawatt smile. "I just looked around the room that day and was like, `This is who I am.' I said, `Mom, I had no idea I could get credit for doing what I do all the time.' And it's never changed. I still wake up and go, `Yup.'"

Still, Phillips says it can take time to figure out how to approach some of philosophy's subfields. Logic, for example, depends on notation systems, symbols and proofs not unlike those used in mathematics and physics. This year she has been working with graduate student Patrick Girard to learn the old Polish notation system that was used in logic before the advent of computers, and they are now translating it into a more contemporary, more accessible system. "We are trying to propose a standard notation for logic that would help in transcribing logic textbooks for blind students, and would help blind logicians in general," Girard says. One project-related discovery particularly pleases Phillips: she learned, from a sighted friend, that Girard had blue hair. Then red.

Given her experience with a disability that's apparent, Phillips empathizes with those who have so-called hidden disabilities. "People can be really disrespectful to students with psychological or learning disabilities," she says. "It's like, `You can do calculus on the board—why can't you read?' Or, `You're really smart, you're getting A's—what do you mean, you have a disability?'"

Because of those attitudes, most students with learning and psychological disabilities prefer not to reveal them. (Those who spoke with STANFORD asked that their names be changed.) "There is a social stigma attached to it, especially in academia," says one graduate student who is dyslexic. "I don't want someone to say, `You can't edit our journal,' and I don't want it to affect future jobs."

Like many students with attention deficit disorder, sophomore Ellen Cooper spent years resisting a "disability" label. Although she was diagnosed in seventh grade, initially she declined the accommodations her school district offered: "I didn't want to be different, and it's really awkward for a 12-year-old to explain to her classmates why she gets extra time on a math test."

Cooper got through high school by putting in extra hours on long-term projects and with help from her parents, who reminded her to organize assignments and deadlines. But in her freshman year, she had to read hundreds of pages each week for IHUM, the required yearlong course in the humanities, and her schedule spiraled out of control. Cooper cut back her course load and asked for extra time on exams. The hardest change? She realized she needed nine hours of sleep each night, and friends were staying too late in her room. "It took me a quarter to be able to say, `You need to leave.'"

Laurel Weeks, a learning strategies coordinator at the OAE, says many students with disabilities need to break down big projects into manageable steps. "It's a lot less scary thinking, `Today I just have to think of three possible topics for a term paper, and tomorrow I'll find some source material,'" she says. "It takes the emphasis off, `How am I going to finish this?' and puts it on, `This is where I'll start.'"

Weeks, who works with about 100 students with learning disabilities each quarter, acknowledges that those study tips may sound simplistic for competitive Stanford students. But information-processing challenges, including reading disorders and memory issues, require specific remedies. That's why Weeks is surprised when she hears about faculty members who accuse students of gaming the system. "If they saw the kinds of documentation I see, I'm sure they would understand it differently," she says. "I see profiles of students who are so capable in so many areas, and then there's an area so discrepant, that it makes [the disability] very real. It's not something someone would try to make up—there's no benefit in that."

Doctoral candidate Connie Stillwell recalls that as fast as her mother would enroll her in gifted classes, she'd have to drop out because she couldn't pass the reading tests. "The number of summers I spent under house arrest when I was 8 and 9, reading books—" Stillwell begins. "It was, `You can't go outside until you've finished a chapter of The Black Stallion or The Secret Garden.'"

Stillwell always suspected she was dyslexic: "I screwed things up all the time." But she also thought nothing could be done about it. She got through college, went on to earn two master's degrees and then applied for a PhD program at Stanford. When she was accepted, her boyfriend insisted that she get tested for learning disabilities. "He said, `You're going to a new school—maybe there's a center there.'"

There was. And on one memorable afternoon, Stillwell and her OAE tutor made a discovery: if she listened to a paragraph being read aloud while she read the text silently to herself, she got it. "I can't see my mistakes," she says. "But I can hear them."

Stillwell now has all of her textbooks digitized by the OAE and she uses two different screen readers on her computer. She says her comprehension has "skyrocketed." The Schwab Learning Center has lent her a laptop and iPod so she can download MP3 files and "read" assignments while she commutes by train. "The office has bent over backwards for me," she says.

The OAE also pays for four hours of foreign-language tutoring each week since learning a new language—a requirement for Stillwell's doctoral program—is one of the toughest academic challenges for dyslexic students. Many students with learning disabilities have difficulty mastering the phonemes of a new language, Weeks says; some have trouble spelling because they can't retain pictures of words in their heads. "It really turns up on vocabulary quizzes and in essays," says Kathryn Strachota, a senior lecturer for the Language Center who has been teaching German at Stanford for more than 30 years.

Strachota, MA '70, says it can be challenging to restructure class activities to accommodate students who need visual and kinesthetic cues. But she recalls a recent exercise in teaching prepositions, when she paired students up and had them tell one another to demonstrate placing a book auf den Tisch (on the table) or putting a picture an die Wand (on the wall). One student with a learning disability came up to her after the class and couldn't stop pumping her hand. "That was good," he said. "We should do that more."

Strachota argues that whatever she does to help students with learning disabilities helps the rest of the class. "It forces you to find more ways to expand your repertoire, and helps you think in different ways to jump-start your creativity."

In fact, making course exercises and materials more accessible to all students is the focus of a new movement called universal design for instruction, or UDI. The philosophy takes its name from architectural principles that were intended to make public spaces more accessible for people with disabilities but ended up benefiting the general population—like curb cuts, originally designed for wheelchair users and now beloved by parents with baby strollers. Similarly, UDI takes advantage of technology to build educational curb cuts into classroom instruction. Take a whiteboard that can capture and later reproduce anything that is written on it. It can be essential for students with visual or learning disabilities, but it likely helps all students organize and remember their notes better. "Now professors make announcements in class to find readers and notetakers," says the OAE 's Bisagno. "But if you had UDI technology in a classroom, it could do away with accommodations, and there would be no need to identify yourself as having a disability."

Despite the specific demands of Surgery 101 and logic, Dumm and Phillips say that often it's relatively minor adjustments that help them most in their classes. In a letter she was asked to write for instructors in the program in writing and rhetoric on teaching students with disabilities, Phillips made several specific suggestions: send assignments in accessible e-mail attachments; give students the option of doing research online, rather than going to the library; include both visual and auditory information in presentations; assign seats in small classes and ask all students to say their names before they speak; distribute outlines of upcoming topics of discussion; get handouts to the OAE well in advance of assignment deadlines; don't be afraid to ask questions. Oh, yes, and don't pet guide or hearing dogs when they're working.

For many students with disabilities, academics demand significant extra time. "It's a constant struggle to stay caught up," Phillips says. Nevertheless, they make time for interests outside of class. "We don't miss out on much," says junior Beth Graham, Dumm's girlfriend of almost two years. Graham and Dumm recently finished the third book in the Chronicles of Narnia and they're now embarked on an audio tape of The Da Vinci Code. They play poker with Brailled playing cards and chess with pegged pieces that don't tip over when someone makes a move. Dumm frequently heads outdoors for hiking, riding horses, kayaking or rock climbing.

When he and Graham take in a movie at a Palo Alto theater, Graham describes the action in a whisper. "And I enjoy it because it makes me see more things about the movie." But she also remembers a Chieftains concert in Memorial Auditorium, when she was telling Dumm about the musicians' instruments and a guy sitting next to them asked why they were talking. "He might not have realized Tyler was blind, but he was so rude," Graham recalls. At least when they go to Flicks there's no danger of offending anyone. "I could probably yell the description if I wanted to."

Phillips also enjoys attending Flicks with one or more of the gaggle of friends who invariably surround her. She writes poems and songs, which she has performed at a Parents' Weekend event hosted by the Writing Center, and is at work on a science fiction epic.

For many years, Phillips has been a spokesperson for the National Center on Shaken Baby Syndrome, and she frequently gives speeches to groups like the American Academy of Pediatrics and the Child Welfare League of America. At those conferences and in an appearance on Good Morning America, Phillips describes how she lost her sight when she was 6 months old and a neighbor's nanny shook her violently, detaching both retinas and endangering her life.

Phillips has hosted many meetings in her dorm room in Storey House to try to revive a community of Stanford students with disabilities, whose members would provide resources and support to other students, and lobby as a group for continued improvements— like more Braille signage in campus buildings. But only one other student has shown up so far, so Phillips is instead putting those off-book hours into doing what she loves most—philosophizing. About free will versus determinism. And blindness.

"Blind is not how I identify myself," she says. "I don't say, `I'm a blind person.' I say, `I'm a philosopher.' Or, `I'm the mother of Bonds.'"

Phillips continues to be surprised by the number of people who want to talk with her about what it's like to be blind. She always obliges, but she also likes to move on. "By age 22, it gets old," she says. "Yeah, I'm blind. Yeah, I can't see. But I have a lot to say about other things."

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