Derrick Phillips is one of two passengers on a small blue-and-white bus lurching down South Chicago Avenue this snowy Tuesday morning in February. He's on his way to a grammar school to give a speech. Under his black topcoat he has on a three-piece charcoal suit, a white shirt, and a black tie. The bus driver, Ernest, is urging Phillips, who's blind, to pray for a cure.
"There's a lot of blind people that have been healed," Ernest hollers. He has to yell to be heard over the bus's wheezing heater and blaring radio, on which a dispatcher is intoning addresses.
Phillips frowns. "Most of the blind people I know don't want to hear anything about God," he calls back.
"I don't know why that is," Ernest says.
"Because they've heard over and over that they should go to church and believe in the Lord and wait for a miracle."
Ernest glances at Phillips in his rearview mirror. "You got to realize that Jesus Christ performed miracles in the Bible," he says. "So it can happen."
"So you think disabled people ought to just keep praying for a miracle?" Phillips asks.
"Yeah, I think they ought to keep praying. Just because you pray don't mean you gonna get it right away."
"And don't mean you gonna ever get it."
"All you can do is continue to proclaim the message. You have to be willing to accept and believe."
Phillips shakes his head. "You know what I tell other blind people? The first thing they have to do? Accept that they are blind. You can't go around dreaming and waiting for something that may never happen. How would you feel if I told you to pray for a million dollars?"
"I already do," Ernest says. "Who knows? I may win the Lotto. One day my train may come through. It may take a long time, but you have to keep praying. That's where your faith comes in."
It's a rare day when Phillips, 39, doesn't encounter someone with an irksome notion about what it means to be blind or what he should do about it. There are the people who assume he must also be retarded, or stupid, or helpless. Others seem to think blind people are deaf too, judging from the remarks they make within earshot: "It must be so hard" or "I'm glad it's not me." As it happens, Phillips is hearing impaired; he has Usher's syndrome, a disease marked by hearing impairment at birth and the onset of blindness in adolescence or young adulthood. But his hearing aids pick up the comments. Then there are those who offer to pray for him. Phillips is no atheist: he's a deacon in his church and a Sunday-school teacher who frequently seeks inspiration from the 18-volume braille version of the Bible he keeps in his living room. But he thinks people with disabilities ought not wait for divine intervention to improve their lives. And he knows what those like Ernest who exhort him to ask God to restore his sight are implying: that if he stays blind it's because he isn't praying hard enough, and that if he had really believed he never would have gone blind in the first place.
After several turns Ernest pulls the bus to a stop in front of a bungalow on the 7800 block of South Kimbark. A young woman bundled in coat, hat, and scarf hobbles out of the bungalow, leaning on two metal crutches. Ernest helps her up the bus's two steps and to a seat at the back.
As Ernest swings the bus onto 79th Street, Phillips tells him about a friend who called him one day about a talk she had just had with God. "She said God told her I just had to read the books of Matthew, Mark, Luke, and John--then I'd be able to see again. I asked her, 'When did God speak to you?' She said, 'Last night.' I said, 'Did he tell you if I had to read the books by a certain time?' She said, 'No. Just as soon as you're finished reading them, you'll be cured.' I said, 'What would you say if I told you I've already read Matthew, Mark, Luke, and John three times?' She said, 'You must have missed something.'"
"She meant that when you were done, you'd be able to see with your mind," Ernest yells back to Phillips.
"I could see with my mind already," Phillips says.
Ernest keeps thumping away. "You want that Holy Spirit to come alive in you," he shouts. "It's activated in me because I keep a cheerful spirit. The Holy Spirit don't activate in nothing bad or sad. It like to activate in goodness and gladness."
"If I'm sad, is the Spirit still there?" Phillips asks.
"It will leave you."
Phillips shifts in his seat. "I wish I had more time with you," he tells Ernest.
"That time would be right now," Ernest says. "No better time to learn about the Lord."
"You have your preacher's license?"
"Yeah--when I got baptized I got my preacher's license."
Ernest turns the bus onto Honore and pulls in front of the Scott Joplin grammar school. He lets Phillips take hold of his elbow and leads him off the bus to the door of the school.
"OK, my friend," Ernest says. "You just keep trusting in the Lord. Before long you'll be seeing as good as me."
The fourth-graders who are shown into the small auditorium at Joplin find an impressive figure on the stage--in his three-piece suit, Phillips looks like a lawyer or a banker. He's trim and smooth chinned, with short receding hair and a mustache that his barber clips on Phillips's monthly visits. His white cane is folded up in one hand. His poised, dignified, cheerful presence may have as much impact on his audiences as what he says. Some of the fourth-graders apparently haven't been told anything about the speaker addressing them today. When Phillips starts by explaining that he was declared legally blind in 1979 and that he lost his vision totally in '85, the boy sitting behind me elbows the classmate next to him. "He blind!"
The second boy looks up from the scrap of paper he's been scribbling on. "Who?"
"That man up there!"
"That man? Look like he looking right at us. He can't see?"
Phillips had risen this morning, as usual, to the blare of his alarm clock and its monotone proclamation: "The time . . . is 4:59 . . . AM." The alarm is almost loud enough to wake neighbors. He doesn't always hear it, so he also has a "shake and awake" alarm clock that sets his bed vibrating at 4:59. He lives alone in a modest apartment on South Chicago Avenue, on the fifth floor of a nine-story Chicago Housing Authority development that's chiefly for seniors. He always has to be up early to arrange his rides, which he must do a day in advance. The companies that provide door-to-door service for people with disabilities, through a Chicago Transit Authority program, start taking calls at 5 AM, and they're liable to be booked by 5:30. Phillips typically spends the first 15 or 20 minutes of his day sitting on his bed, punching the redial button; the longer it takes to get through, the more nervous he gets. This morning he was lucky; he got through at 5:07. After he shaved and showered he listened to a tape about psychoanalysis for the "Foundations of Counseling" class he's taking at Roosevelt University, where he's pursuing a master's degree in guidance and counseling. He sliced a banana into a bowl of Frosted Flakes and caught the news on the radio. Then he dressed. He felt through the suits in his closet until he recognized by the material the charcoal one he wanted. All of his dress shirts are white and his ties dark to avoid an embarrassing clash.
I arrived at his apartment at a quarter to nine. At ten after Phillips got a call telling him his driver was waiting out front. He put on his topcoat and pulled a knit cap out of a closet. "What color is this hat?" he asked me. "I don't want to wear the red one. People see me in a red hat, they'll say, 'He must be blind.'" I assured him this one was black. Then I pulled on my red knit hat, and we headed out the door.
Now, on the stage, Phillips is telling the Joplin students, "When I lost my vision, the truth is I became very frightened--because I didn't know what was left for me. I even considered killing myself."
But he says he learned he could still do most of the things he enjoyed: swimming, jogging, bowling. He couldn't cook before he went blind, but now he can make peanut-butter cookies from scratch--and his kids call him Chef Boyardee. The fourth-graders giggle.
Because he was born with a hearing impairment, he tells them, he had difficulty talking when he was small. Classmates used to pay him a dime to hear him say "shicken" and "shocolate." When he was a fourth-grader classmates told him he wouldn't make it through fifth grade because of his hearing problem; in fifth grade they said he wouldn't make it through sixth. "I graduated college, and now I'm back in school getting some more education. I'm writing my autobiography. I tell you this because you can be anything you want to be. Don't let anybody tell you any different." His voice rises. "You can do whatever you want to do. You can and you will. I know you will.
"I'm just a human being who happens to be blind. I don't want to be blind. But because I am blind, I'm going to be the best blind person that I can be."
He exhorts the students to stay away from gangs and drugs. Some of the young men he's taught braille to were blinded by bullets, he says, injured because they'd been messing with gangs. "Don't you want to stay alive?" he shouts.
"I want to stay alive too. Keep your eyes open. Remember--you are the future. If you're looking for someone to be a role model for you--believe it or not, you are the role model for yourself."
When, after 20 minutes, he says he's ready for questions, a dozen hands shoot up. A teacher hands the first questioner a device Phillips has brought with him: a small black box with a pinkie-size microphone connected to it. Thanks to this F.M. Personal Communicator the kids can ask their questions in normal tones; the signal is transmitted to a receiver in an inside pocket of Phillips's suit jacket and on to his hearing aids.
"When you got blind, did it hurt your eyes?"
"No, it hurt my mind more than my eyes."
"How do you get around outside?"
He unfolds the cane and demonstrates. He says he listens carefully for the sounds of accelerating and braking traffic, and asks for help when in doubt.
"How do you know who you can trust?"
He carries very little money with him, he says, and steers clear of unfamiliar areas. "But you really can't be fearful all the time, otherwise you'll do nothing but sit in the house. And I refuse to do that."
"Why don't you have a dog?"
Because some taxis won't pick you up if you have a dog, he says, and some restaurants won't serve you; and because he doesn't want to have to walk a dog every morning and every night and clean up after it.
"Can you see anything? Does it look totally black or is it blue?"
When something passes quickly in front of him he might see a shadow, he says. What he usually sees looks mostly black, but during the daytime it seems a shade lighter. Right now, staring out into the audience, he can't see a thing, he tells the students. But sometimes his imagination plays tricks on him. "One day I woke up and I thought I could see. I looked around and I said 'Oh! Look at the window! Oh! Look at the TV! Oh! Look at the bookcase!' I jumped out of bed, fell over a table--said 'Oh! Get back in bed!'" The students roar.
When the session ends, the fourth-graders clap thunderously for Phillips, their applause echoing off the tile walls, causing him to quickly tap a hearing aid with a forefinger.
"I learned that being blind isn't as horrible as I thought," one of the fourth-graders tells me before she leaves the auditorium. "You just have to work harder at things."
Next Phillips speaks to three classes of fifth-graders in the auditorium. That address ends at noon. His final talk, to sixth-graders, isn't until 1:45. He waits patiently, first on the stage and then in the back of a classroom, reading a braille article he brought with him on a new telecommunications device for the hearing impaired. He had arrived at Joplin at 10 AM; it will be nearly 3 when he leaves.
Since he began giving speeches a year and a half ago, Phillips has addressed students at more than a dozen Chicago and suburban schools, as well as workers at the Chicago Board Options Exchange, Morton Salt, and Ryerson & Son steel. The Chicago Lighthouse, an agency for people who are blind or visually impaired, arranges the talks. He sometimes receives a token fee when he speaks to a company, but he gets no pay for his school addresses. During his five hours at Joplin a teacher did give him a cup of water and a sweet roll.
He earned his bachelor's degree in business administration in 1989, then interviewed for dozens of jobs with no success. He believes many employers declined to hire him because of his disabilities. He can type 55 words a minute and has taken training in word processing. Still no job offers. He gives the speeches to educate the sighted public about the capabilities of the disabled. Also to keep himself busy. "This is therapy for me," he says. "I don't leave myself time to be sitting around whining and worrying about the job I don't have.
"I'm probably doing much more now than I did when I was sighted. I enjoy it when people tell me I can't do something. I'm like, 'Well, let me show you.' When I go by myself to Springfield [to lobby legislators] or Highland Park [to speak], people seem to be stunned. I took the train to Wilmette to speak, and when I got off there was a woman waiting for me in the station. First thing she said was 'Who's with you?' I said, 'My cane.'"
He used to spend more time griping about how unfair employers are to people with disabilities. But about two years ago he decided the moaning and groaning was only making him miserable. "I asked myself, 'If I should die tomorrow, what contribution will I have made to this world?' I decided I wanted to show people that whatever disabilities you have, you can make it. Let them know that it isn't the eyes or the ears that make the person, it's the heart."
When he's not giving speeches, Phillips may be attending classes, or studying, or teaching braille, or working on his autobiography ("I'm Blind--So What?"), or attending a meeting of one of the advisory committees or boards he's on, or helping out at his church. Frequently he doesn't make it home until 10 PM, after which he may read or listen to a tape for school until midnight or later. Then he's up the next morning at 4:59 to call about his rides. For all of which he gets a social-security check.
"Of course I want a job," he says. "Of course I want the money--who don't? But my philosophy now is keep working hard, keep studying, keep giving up your time. I figure that one day somebody's going to notice what I can do.
"If I had become a wino, people probably would have understood it--said, 'I would have done the same thing if I was him. After all, look at what he's gone through.' But I refuse to use that as a cop-out. You hear people all your life saying if you work hard, you'll get rewarded. And I say, well, if it's true, let me find out. Let me work hard and see."
When Derrick Phillips turned three he knew only a few words, and his mother, Mary Phillips, feared he was retarded. Derrick's grandfather said he thought the boy just couldn't hear. Mary took him to an eye-ear-nose-and-throat clinic. The doctor there scoffed at her concerns. Don't be so anxious, he'll talk in due time, he told her. He wouldn't even give Derrick a hearing test. Nine months later Derrick was still barely speaking, and Mary brought him back to the clinic. Another doctor tested him--and found his hearing in each ear to be half of normal. He was fitted for a hearing aid.
Derrick first attended grammar school at Marquette, a public school in the white neighborhood west of the Phillips's Englewood community. Marquette had a few special classrooms for the hearing impaired that were equipped with headphones through which teachers could talk to the students. A school bus picked up Derrick at his home in the morning and dropped him off in the afternoon. One morning when he was a second-grader he got up late and missed the bus. His father put him on the 63rd Street CTA bus, telling the driver where Derrick needed to get off and asking him to make sure he crossed 63rd safely. Derrick made it to the school yard without a problem; he was beaming with pride over his accomplishment. But instead of heading for the entrance he normally used, he walked toward a nearer door. This path took him through a group of white kids who called him a nigger and threatened to yank the hearing aid out of his ear. Derrick froze and began screaming, and he didn't stop until a teacher came to his rescue. In his mind, race had nothing to do with the incident; it was entirely the fault of his hearing aid. This was the first time he thought of himself as different, the first time he wished he didn't have to wear the hearing aid. He began noticing the questions his brothers' and sisters' friends were asking about him: "What's that in his ear? What happened to his ear?"
When he was in third grade, school officials decided his hearing disability was mild enough that he could attend his neighborhood school, McCosh. At first Derrick was delighted to be able to walk to school just like his siblings. But because he was the only one in his class wearing a hearing aid, taunts and stares grew common. The hearing aid was an awkward thing--a three-by-five-inch box he wore under his shirt, supported by a cloth harness he had to buckle around his chest and connected by a cord to the earpiece. Kids at McCosh wanted to know if he had a radio on and whether they could listen to it. He felt they were gawking at him as they would an animal in a zoo. Some did more than gawk: they would stand in front of him and shout "DERRICK--DO--YOU--HEAR--ME?" and run away, howling. Or they'd mutter something unintelligible and act as though he should have been able to hear. Derrick frequently came home in tears.
"It's no big thing," his mother would tell him. "You know what your handicap is. Those kids think they're normal, but by them acting that way they're just showing they got their handicaps." She told him his hearing problem wasn't his fault, that he had been born with it. Derrick would have preferred a dramatic accident he could have bragged about. Many a time his mother made Derrick repeat after her: "Sticks and stones will break my bones, but names will never hurt me." After which Derrick would say to himself, "I should get a stick and break their bones so they'll leave me alone."
Mary Phillips comforted her son, but she didn't coddle him. "Now, you're not going to be no crybaby," she would tell him. "You're not going to use your hearing for no excuse. We have more children, and we don't have time to pet you and single you out."
Born and raised in the east, Mary Phillips says she came up "in the old ways--you went to school, and you went to church, and you worked." Her father, a World War II chaplain who spoke eight languages, died shortly after the war--in the pulpit, felled by a heart attack as he preached at another veteran's funeral. Her mother was a hardworking, hardheaded woman who told her four children "not to use that word 'can't.' She used to say, 'There's no such word and don't use it in this household.'"
Mary's three siblings all graduated from college. Mary got pregnant at 17, which set her on a different course. Yet her parents' vigorous spirit shone through her in other ways. After she had her sixth and final child, she wanted to help the family make ends meet. Her friends told her, "When people see you with all those kids, who's going to hire you?" But she found jobs--government clerical positions--and won achievement awards for her work. "When you tell me what I can't do, I have to show you what I can do," she says.
Derrick had his own stubborn streak from the time he was a toddler, Mary says. He wouldn't stay in the yard, and she frequently found herself chasing after him down the block. "He's a Sagittarius," she says. "It's the sign of the bow and the archer. They are determined. And they will keep going on until they get where they want to go."
The ridicule didn't diminish as Derrick advanced to the upper grades at McCosh. In eighth grade three girls in his class harassed him constantly. "They were the kind of girls you would not want to mess with," Derrick's longtime friend Angelo Poindexter Sr. recalls. "They had brothers in these big gangs that carried guns and all that." The girls were responsible for leading the class through the Pledge of Allegiance and the national anthem on mornings when the teacher was out of the room. Derrick would show his distaste for the girls by being slow to rise when they directed the class to. Then one of the girls would get in his face and yell, "DERRICK, I know you didn't HEAR me, but would you PLEASE STAND?" After the pledge the girls would gleefully begin singing, "Oh, say can you HEAR . . . " to the delight of their classmates.
Derrick got in more than his share of fights in grammar school, usually in response to the gibes. "I got whupped good in some of them," he says. "I didn't have the sense not to pick on the big ones."
Adults occasionally joined in the fun had at Derrick's expense. Derrick would be walking home from school when somebody on a porch would pop a paper bag or slam a door--the boom in the hearing aid making Derrick jump, and the culprit roar.
Derrick found himself putting the hearing aid in his pocket frequently. And hiding it. And losing it. Then his folks would have to lay out $200 or more for another one. And they weren't rich. (His father worked in the mail room of a publishing company.) The hearing aid became a real point of friction between Derrick and his father, and many of the whuppings Derrick received were related to it. Derrick knew his father only wanted him to make full use of something that had cost the family dearly. But it seemed to Derrick that his father didn't appreciate the burden of wearing the hearing aid.
"Yes, we felt sorry for him," his father, Arties Phillips Jr., says. "But we couldn't pamper him, because it's a rough world out there. And he had to learn to do for himself."
Sometimes Derrick would awaken in the middle of the night, certain his hearing problems were over. Then he'd realize he'd just been dreaming. Instead of regaining his hearing, when he was 11 or 12 he started losing his sight.
It was a warm, overcast afternoon at Washington Park. On one of the Little League diamonds Derrick Phillips was mowing them down. For five innings the other team swung through his fastballs or tapped infield rollers. Then he tired, and the batters began connecting. His team still led by one in the final inning. But when the opposition put the tying run on base, his coach waved him out to center, and brought the center fielder in to relieve him. The batter lifted a fly in Derrick's direction. He saw it leave the bat, then lost sight of it. If the sun had been shining he would have had an excuse. The ball landed beyond him, the batter circled the bases, and Derrick's team lost.
Derrick hoped someone on the team would tell him to shake it off, that it was no big deal. Instead he heard teammates asking the coach to "kick his butt" and to "make him walk home." The players assumed he'd been mad about getting yanked off the mound and had refused to chase the fly. He tried to explain what had happened to the coach, but the coach wouldn't buy it: "Don't tell me you didn't see that ball!"
This was the first time Derrick noticed his eyes failing him. He soon noticed it more and more. At home he started bumping into tables and knocking over chairs, earning him scoldings from his parents for his clumsiness and carelessness.
His eyes often itched, and rubbing them didn't seem to help. He'd stand in front of the bathroom mirror, searching his eyes for a piece of sand or glass. He'd heard a story about a man who'd gotten a piece of glass in his eye, which had required an operation, which had caused his death--and he worried this might happen to him.
When he was 12 he went camping with his Boy Scout troop in Muskegon, Michigan. After swimming one night in a pool, he needed someone to help him find his way back to the campsite because everything looked so blurry. For a long time afterward he would blame his vision troubles on the chlorine in that pool.
His mother took him to an eye doctor when he was 12. The doctor shone a penlight in his eyes and peered into them for a long time. Derrick hoped he'd found that piece of glass. Instead the doctor announced that he had a "lazy eye," that he needed to wear a patch over his "good" eye to strengthen the other one.
Wearing the patch, Derrick bowled over things at home just as often as before. All it did was make him feel even more odd: now he had a cord coming out of his ear and a patch covering his eye. It also gave him and his father something else to argue about--Derrick sneaking the patch off whenever he could, his father punishing him when he caught him. After four months his mother could see the patch wasn't helping and told Derrick to get rid of it. He obliged with relish.
His mother got him glasses when he was 15. They just made it harder to see. "Your eyes will adjust," his parents and teachers told him. After several months everything still looked blurry through them. To read the blackboard he had to push them down his nose. There were more whuppings when his father caught him with the glasses off.
On warm evenings his parents liked to sit on the front steps of the family's two-flat, chatting with friends and relatives. Sometimes Derrick would be asked to get something from the grocery next door. Inevitably he'd step on or trip over someone on the stoop. "Watch where you're going!" he'd hear, and "Don't tell me you didn't see me sitting here, big as I am." The porch sitters would warn one another whenever they saw him coming: "Let him have the whole porch or he'll step all over you." He took to using the back door.
As a freshman at Englewood High, he worried about his frequent collisions in the hallways, fearing especially a literal run-in with one of the school's many gangbangers.
His sophomore year his mother took him to yet another eye doctor. This doctor asked Derrick to stare straight ahead while he slid a small white ball past his eyes. Derrick was unable to see it until it was almost directly in front of him. Same thing when the doctor moved the ball in front of him from the other side. After some more tests the doctor told Mary Phillips her son had retinitis pigmentosa.
Retinitis pigmentosa refers to a group of disorders marked by night blindness and a progressive loss of field of vision. It was first described in the 1850s, when it received its misnomer: there is deterioration of the retina, the innermost coat of the back part of the eyeball, but not an inflammation of it, as "retinitis" implies. "Pigmentosa" refers to the black clumped pigment usually found in the retina of these patients. Retinitis pigmentosa is hereditary. Geneticists have been trying to find the locus of the disease--a first step toward cloning the gene and exploring the molecular defects. They recently isolated the problem gene in the form of the disease that 30 percent of retinitis pigmentosa patients have--but that's not the form Phillips has.
His parents don't know of anyone on the family tree who had similar eye problems, but two of his younger sisters would later be diagnosed as having retinitis pigmentosa. Today his 36-year-old sister has night blindness and a very limited field of vision; his 29-year-old sister has some vision problems at night but still sees well enough during the day to drive.
It's unclear how many people with retinitis pigmentosa also have Usher's syndrome--are born with a hearing impairment and later experience the eye symptoms. Estimates vary from 6 to 33 percent. Named for the British ophthalmologist who in 1914 emphasized its hereditary nature, Usher's syndrome afflicts an estimated 1 in every 23,000 Americans and from 3 to 6 percent of the deaf population. About half of the 16,000 people in the U.S. who are both deaf and blind are believed to have Usher's syndrome. Derrick's sisters have both worn hearing aids since childhood and now must wear one in each ear.
The doctor who diagnosed Derrick's disease referred his mother to the Illinois Research Hospital. There she was told that he probably would be completely blind by the time he was 25. Doctors aren't always right, she thought. She decided not to tell him the prognosis.
For Derrick the diagnosis seemed a mixed blessing. He wouldn't have to wear glasses anymore because the doctors confirmed what he'd been telling his parents all along: glasses didn't help him. But he was also told he'd never be able to drive.
He tried to hide his vision difficulties from peers. If he was invited to a party, he'd check out the house earlier in the day, note where the door was, how many stairs--improve his chances of not embarrassing himself that evening. He'd go to the party with a friend to have someone to follow. He'd drink just enough wine to get it on his breath so that when he started bumping into things people would think he was high. "I preferred people to think I was drunk than to say I couldn't see," he says.
After he graduated from high school Phillips got a job as a mail clerk at the Chicago Board of Trade. "You must really love your job," coworkers would tease him, because of the long days he put in. In reality he was arriving early and staying late to avoid the rush-hour crowds on the el, to minimize his collisions. He needed extra time at work anyway because reading and sorting mail had become a formidable task. Still, by 1976, after three years in the job, he had worked his way up to supervisor of the mail center.
He was married in 1976, and he and his wife bought a home in Park Forest South. His wife realized he had trouble seeing, but he didn't tell her before they married about the retinitis pigmentosa. His vision wasn't going to get a whole lot worse, he told himself, and he could manage most things now--so why make a big deal out of it?
He had liked the idea of a nice placid life in the suburbs, but he soon realized his town wasn't just quieter than the city--at night it was darker. Smacking into trees on evening walks, he yearned for the sodium-vapor-bathed streets of Chicago.
Having convinced himself he could drive safely as long as it was never at night, he signed up for lessons. An instructor came out to his house late one afternoon, and soon Phillips was tooling along Lincoln Highway. He was enjoying himself so thoroughly that, like Cinderella, he forgot the hour. Dusk settled in, and the other cars became blurs. "I've got to stop," he told his instructor. "There's something in my eyes." When the same thing happened the next time, the instructor warned him sternly to get his eyes checked before trying to drive again.
Phillips had been visiting the Illinois Research Hospital about once a year for tests. It was during a visit in 1979 that a doctor told him his field of vision was now so limited he was legally blind. Consider the bright side, the doctor said: it's a tax deduction.
Phillips was stunned. Blind? He knew his vision was deteriorating, but being blind was something he hadn't let himself consider. "I already had trouble hearing," he says. "If I was blind too I figured people would really think I was a freak." A tax deduction, he thought. Big deal. How am I going to tell my wife? How am I going to tell my boss?
His wife was supportive when he told her. But his unwillingness to be honest in the first place about the extent of his eye problems caused a tear in their relationship that they never managed to mend. There was tension too, he says, over his desire to move back to Chicago; his wife preferred to stay in the suburbs. Late in '79 they separated, Phillips leaving his wife and two young daughters and moving in with his parents. The couple divorced the next year.
In 1980 Phillips and his friend from McCosh, Angelo Poindexter, rented a condominium on the southeast side. Phillips didn't tell his roommate about his eye problems at first, and Poindexter too thought Phillips was just extraordinarily clumsy. "All right, I know you just stepped on my shoe on purpose," Poindexter would say to him. "How about you walk on the top, and I'll walk on the bottom?"
Eventually Phillips told Poindexter. He let him know how scared and depressed he was. He mentioned suicide. "Now you're talking crazy," Poindexter said. "Your life ain't over. What about Ray Charles? What about Stevie Wonder?"
"I'm no musician," Phillips said.
"I felt bad for him," Poindexter says, "because if I could pick something to lose, I was not going to pick my sight. Take my hand--maybe a foot--but not my eyes."
Legally blind, Phillips continued working at the Board of Trade for another three years. He had decided not to risk his job by telling his boss. But as time went on and his field of vision narrowed even more, he was falling over boxes and running into walls, and he knew people were wondering about him. Finally, in January '83, he told his boss. The boss offered him a desk job, but Phillips felt it was a make-work assignment and quit that month. "I wanted to leave with dignity," he says. "I thought, let me take advantage of this opportunity--get social security, go to school and get a degree--then maybe come back here. I wanted to make sure that whatever desk job I had, it would be something meaningful." Quitting meant money became a problem for the first time in his adult life. He got $641 monthly from social security. With all the overtime he'd been working, he'd been taking home $1,400 a month.
He took some courses at Loop Junior College in '83 and '84. Studying proved difficult. He started taking notes in felt pen--the only way he could make them out later--and he needed a magnifying glass to read his books. But he managed to pass the courses.
He bought a white cane from the Lighthouse, but he rarely used it. To him the cane seemed like a neon sign announcing "HERE IS A BLIND PERSON." He didn't know how to use it, so when he did he still walked into things. One day, cane in hand, he crashed into a light pole and split his forehead.
It was a time of ambivalence for Phillips. On the one hand, he was still denying he was going blind. I can watch TV, he said to himself. I can get around during the daytime. How can anyone call me blind? A few classmates in high school had been blind, but he'd never gotten to know them. "I used to look at them from a distance," he says. "I didn't know how to approach them. I never thought, 'They're human beings just like me, they talk just like I do, they just have a visual problem.'
"I thought that being blind would mean being totally dependent. I didn't want to stay in the house. I didn't want no one to have to lead me around. I didn't want anybody to look down on me, to have someone give me my dinner and give me my breakfast. To have people telling me, 'You sit here.' 'Come on and stay over here.' Sitting in a corner, listening to a radio. Or being one of those guys under the el, wearing dark glasses and selling gum."
But on the other hand, Phillips was also beginning to exploit his disability. He conned the cleaners into picking up and delivering his laundry, telling the owner he'd do it himself, if only he could see. In grocery stores he'd purposely jostle a rack near the front; the manager would hand Phillips's list to a clerk and have the clerk pick out his food. He'd bang into a post or a rope at the bank; a guard would lead him to the front of the line. The pitying remarks of others were sinking in: he was beginning to pity himself.
He got a letter from the Illinois Department of Rehabilitation Services (DORS), advising him to call a DORS counselor named Jim Rhoades. (DORS routinely contacted people who were receiving social security due to a disability.) When Phillips called Rhoades, the counselor asked him to come to his office in Chicago Heights. He told Phillips he would have to ride three buses to get there and commenced giving directions. Phillips waited smugly for him to finish, then said, "Mr. Rhoades, it's obvious you are not familiar with my case, or you wouldn't be asking me to travel so far. I'm blind."
Phillips waited for the counselor's sheepish apology. But Rhoades just said, "So what?"
"Mr. Rhoades--perhaps you didn't hear me," Phillips replied. "I said 'I'm blind.'"
"So what?" Rhoades repeated. "I'm blind too."
Phillips got someone to give him a ride to Rhoades's office, skipping the bus trip. But the counselor's rejoinder stayed with him and later would become the tentative title of his autobiography.
Rhoades says, "If you let blind people feel sorry for themselves and let them refuse to do things for themselves, they can get caught up in that, and they won't strive for independence. Pretty soon they're letting other people make some major decisions for them."
In the fall of '85 Phillips enrolled in Roosevelt University downtown. But by now he could make out only a letter at a time with a magnifying glass instead of a word at a time. He fell hopelessly behind in his courses. He called the dean of the school to withdraw. His hopes of someday landing another job were disappearing, like the words in the books he could no longer study.
He moved back in with his parents to save money and to have someone to cook for him. He moped around, wondering what he was supposed to do now. He started going to church more often, asking God to return his sight. Instead he noticed one Sunday when he gazed up into the choir loft that he couldn't make out any of the faces. What am I going to church for? he asked himself. What kind of God would do this to me?
One morning he asked his brother to come to his room to help him fix the reception on his TV. "But it's a perfect picture," his brother said. A few days later he discovered he couldn't pick out the record he wanted to play, because the album covers all looked the same.
He spent afternoons locked in his room, sprawled across his bed, crying. He didn't want anyone to see how he felt, didn't want any more pity, didn't want a sighted person telling him, "I know how you feel."
One afternoon he set out for a neighborhood grocery. It was a test for him. If I can make this trip, he told himself, I'm not really blind. On the way he walked in front of a car turning out of an alley; the car screamed to a stop, narrowly missing him. "What's wrong with you?" the driver raged. "You drunk bastard!"
Phillips bought a jar of apple juice at the store. When he returned home, he tried pouring himself a glass of juice, wanting to know if he could see when the glass was full. He overfilled the glass, spilling the juice on his hand and the table. He tried again and overfilled it again.
He went up to his room, locked the door, pulled a bed sheet out of his closet, and began knotting it. He intended to hang himself from the sash of his second-floor window. He worried about the anguish this would cause his mother. He thought that the way things were going for him, he would fail even at hanging himself: the sash would give way, and he'd fall to the porch, break his spine, and end up in a wheelchair--deaf, blind, and paralyzed. He untied the sheet and returned it to the closet.
Just then his mother came up the stairs to talk to him. It was as if she suspected something, Derrick thought. She asked him when he was going to get some help. "Help for what?" he asked, as nonchalantly as he could.
But he thought, I can either kill myself now or fight this. A few days later he agreed to follow a recommendation from a state rehab counselor and enroll in a residential program at the Illinois Visually Handicapped Institute (IVHI) on the near south side.
He arrived at IVHI, at 1151 S. Wood, one morning in January '86. He sat for a time in a lobby, waiting for a counselor to assign him a room. He heard canes sliding across tile and tapping walls, and voices full of jokes and small talk. How can these people be happy? he wondered. Don't they realize they're blind?
The first thing his roommate, Willie, wanted to know was if he was totally blind.
"I'm, uh--visually impaired," Phillips said softly.
Willie laughed. "Why don't you just say you're blind?"
Willie told Phillips he'd be pleased to have him for a roommate, so long as Phillips wasn't going to sit around sulking all the time.
At lunchtime Willie led Phillips to the cafeteria. Willie told him where the trays and the silverware were. "You mean we got to get our own food?" Phillips asked.
"If you want to eat you do," Willie said.
In the line Phillips noticed again the constant buzz of cheery conversation. It seemed that everyone was at ease here but him.
After lunch he asked Willie if he should leave his tray on the table. "Did you hire yourself a maid?" Willie asked him. "If not, you better take that tray back to the rack."
"Where's the rack?"
"I thought you said you could see a little," Willie said. "As long as you keep pretending you ain't blind, you going to keep having problems."
One of the first things Phillips was taught at IVHI was use of the cane. He hadn't thought there was any particular technique involved. He learned how to sweep the cane to the right and step with his left foot, then sweep the cane back to the left and step with the right; he learned how to use it to measure the depth of steps. He learned, mainly, that ease in using it came from practice. He practiced day and night, and soon was moving about with a nimbleness that amazed and delighted him. "Take it easy on these stairs," staff members would caution him as he hustled by. "Don't worry--I got it," Phillips would respond proudly.
Soon Phillips was touring the neighborhood, discovering light poles and trees with his cane instead of his forehead or his chest or a knee. "No more kissing poles," he told himself happily.
He began learning braille. Other students said braille wasn't worth the great time and labor it required to learn. But Phillips had come to IVHI with a pledge: Try it before you say no. He worked on his braille like he worked with his cane. When he was discouraged he reminded himself how much he wanted to return to college, earn a degree, and rejoin the work force.
At IVHI he also learned that he could still jog--joining pinkies with a sighted partner or hanging on to a short rope the partner held. He could still swim, doing laps along the wall in a pool with roped-off lanes; he could even still bowl--aided by a rail that oriented him when he was about to release the ball. He learned how he could use a cardboard cutout to get everything on the lines when he wrote checks; he learned how to cook with the help of braille timers and oven mitts that went up to the elbow.
When he left IVHI five months later, his mother recalls, he was "all gung ho, full of life and vitality. He knew he didn't have to stay at home and sulk and carry on. He knew he had a part in the world."
Phillips says he had come to IVHI thinking "all these programs were there just to pacify us. But I learned that I could be an independent person, I could live by myself--that I could pursue everything in life I wanted to. They said it was all up to me, and I took that to heart."
He got married again in June of '86--to a sighted woman who, he says, promised "to be my eyes for me." He reenrolled at Roosevelt University that fall.
School was still a struggle. He was able to get the braille version of the textbooks he needed from a New Jersey organization, but since he was relatively new to braille his assignments took forever to read. Likewise, when he took notes in class, punching a slate with a stylus, he couldn't keep up with the lecturer. He tried tape-recording his classes but learned he didn't have time to listen to a full replay of every lecture. He ultimately developed his own shorthand system. His hearing had deteriorated to the point that he now needed a hearing aid in each ear.
Early in his second semester an economics instructor told him after class one day: "Derrick--I really admire your motivation. Seeing what you're trying to do lifts me every day. So I'm sorry to say this, but there's no way you can get through this course. It's just not possible." The work was too visual, he said: 80 percent of it was based on an understanding of graphs.
Phillips left the room dismayed. "Lord, you got to help me now," he said to himself. "You didn't bring me this far to have me quit now."
Two days later he received a package from New Jersey. Inside was the braille textbook for the course--full of raised-line graphs. Phillips hadn't known the organization produced this kind of book. He stayed up all night, studying it gleefully. When the instructor asked questions about graphs the next morning, there was Phillips waving his hand.
Phillips would spend four to six hours a day at the Blind Service Association, a not-for-profit agency at 22 W. Monroe, listening to a volunteer read his textbooks to him. He soon discovered that despite the obstacles his disabilities posed, or perhaps because of them, he was a far superior student now than he'd been before he was blind. "My concentration was better. Before I could be distracted by friends in the street, neighbors, what's coming on the television. So I would procrastinate. When you're sighted you can go home with your book, say, 'Oh, ten o'clock I'll start reading.' When you're blind, there's no room for procrastination. I had to go straight to Blind Services after I got through with classes and have someone read me the material then."
Phillips thought that once he graduated from Roosevelt, he could become a counselor or a rehab teacher for the state. A bachelor's degree was required for consideration. Six months before he graduated, in January '89, the state raised its requirements: a master's degree was now needed.
Still, when he graduated he assumed finding a job would be easy. "I really had my chest poked out," he says. "I was thinking, 'I know I got a job.'" He made the rounds of employment offices, applying for entry-level business positions. We'll call you if we need you, he was told most everywhere he went. The phone never rang. Classmates at Roosevelt had told him they envied him; they said that with affirmative action a black guy with a degree and a disability could almost name his position. After a few months of unproductive interviews, Phillips was wondering, "Where're all these jobs for the disabled at?"
He says he applied for more than 75 jobs in the year after graduation with no luck. Sometimes the people in the personnel offices asked him if he was lost; other times he could sense that his interviewers' "eyes were on the cane."
"Why don't you try running one of those concession stands downtown?" more than one acquaintance asked him. Because I've got a college degree and management experience, and I'm capable of more, Phillips thought, though he generally held his tongue.
Phillips has now been living in the apartment on South Chicago since last August. He and his second wife separated two years ago, and he stayed with his parents for a time. But he wanted to try living alone.
The one-bedroom flat has bare beige walls and tile floors, and is sparsely furnished with hand-me-downs from friends and relatives. In the living room there's a small couch, a bookcase holding his braille Bibles and his stereo--the speakers on either side of the bookcase--and a 19-inch TV. He has the TV because "if I have guests come over I want them to feel comfortable. I don't want them to feel that because I can't see, they can't watch it." When guests visit at night, he usually remembers to turn on the lights for them, but he has on occasion welcomed them into a pitch-black apartment. One advantage of being blind, he says, is the savings on the electric bill; he pays about $10 a month.
A Formica island separates the living room from the kitchen. Phillips hasn't cooked much since moving here. He's been too busy, he says, and he finds cooking for one almost as expensive as eating out. When he cooks on top of the stove, he uses the back burners, so if a pot or pan tips it won't fall on him. He prefers baking to frying because he doesn't have to worry about splattering grease.
A friend or relative usually accompanies him when he goes grocery shopping. When he's putting his groceries away he'll label some of his cans, sticking a braille C, B, or P on his corn, beans, and peas. When he's too hurried to do that, he'll place the cans in certain positions in his cupboards and trust his memory. That occasionally means surprises at dinner. Most foods he can recognize by their shapes and sizes: the tuna cans are smaller than the soup and vegetable cans, the apple juice he buys comes in a round jar, the grape juice in a rectangular one. Breakfast is easy: Frosted Flakes is his only cereal.
"Once you become blind you do become more organized," he says. "I have this apartment set up so I know where everything is. I know my stereo is on the bottom shelf of the bookcase, and the next two shelves are where the Bibles are. Over there is a table with the braille writer. [A small machine that resembles a manual typewriter with fewer keys, it makes several punches at once for quicker writing.] In that socket is a battery charger for my hearing-aid system. Next to my bed I have a radio and a tape recorder on the floor. It's a matter of keeping everything in the same spot." When he was still living with his second wife and her two kids, "If I put the deodorant up on the second shelf in the bathroom, then somebody else moved it. I wouldn't know where it was--it may have been right on top of the toilet, but I didn't know it." One morning when he was living with his parents he sprinkled flour instead of sugar on his cereal.
His phone and answering machine are also in his bedroom. The phone has an amplifier, and he can flip a switch on his hearing aid to make phone conversations easier to hear. People who are visually impaired can call 411 free when they need a number, but Phillips usually consults one of his braille directories because he thinks he can use the practice. "Braille is like anything else--if you don't use it, you lose it."
His building is infested with roaches, and he has bait disks scattered throughout the apartment. About twice a month he recruits a teenager from church to sweep up the roach carcasses and mop the floors for $10.
Living alone does get dreary, he says. "Sometimes I'd like someone there to cook me a meal, or to cook a meal for. I get tired of hot dogs and Polish. It'd be nice to have someone to tell me if I'm dressed all right. The only thing I really enjoy about living alone is the peace--I can come home and study with no interruptions. I don't have to worry about, 'Are you listening to that tape again?' 'Cause it's nothing for me to get into a tape at eight o'clock at night and to get out at two in the morning."
He doesn't spend much time in the apartment, what with his hectic schedule. These days he relies mainly on the CTA's special transportation for the disabled, but when he was taking the CTA's regular buses and els he found getting around the city not nearly as hard as he had expected. "It's just certain routes you get familiar with. I used to always ride the Jeffery bus downtown. At 95th and Jeffery, there's one of the longest viaducts in Chicago--you can feel it when you go through it. At 76th and Jeffery there's a little slope--shoop. At 71st there's tracks--bump, bump, bump. Then it makes a turn, you're going straighter, faster--the Outer Drive. First stop downtown is Balbo. Then Harrison. Congress, Van Buren, Jackson. People depend on their eyes so much they forget they have other senses."
When I rode with him to Joplin I asked him, about a half-hour into the eight-mile trip, to guess where we were. He said he'd been so absorbed in his conversation with the bus driver that he couldn't say with much certainty. He figured we were on 79th Street, perhaps near Racine. We were indeed on 79th, just a block past Racine.
"I've driven people who have been blind for 15 or 20 years who are afraid to walk from their door to the car," says Claudia Cheres, a driver who works under the CTA's transportation program for people with disabilities. She's been Phillips's most frequent driver. "Derrick's not afraid of anything. I drop him off at Roosevelt downtown. I say, 'How are you going to get to Blind Services later?' He says, 'I'm going to walk.' I say, 'Derrick, you're at Roosevelt and Michigan. Blind Services is at State and Monroe.' He says, 'Claudia, I can count blocks.' I say, 'Derrick, be careful.' He says, 'You worry too much.'"
Traveling about the city tests his tolerance more than his courage, Phillips says. One day on the bus a woman began shouting at him: "Why are you staring at me? I know you ain't blind! You ought to be ashamed of yourself!"
Another day a man asked him, "What are you doing outside?"
"What's that?" Phillips said.
"Sir--why are you out here?"
"What do you mean, 'Why am I out here?'"
"People are getting mugged and killed all the time--you shouldn't take such a risk."
Phillips told the man testily that he'd rather get mugged than stay holed up in his apartment.
His only altercation occurred on the Roosevelt Road bus three years ago. A man reeking of alcohol started elbowing him in his ribs. Phillips hollered at the man to stop. When he didn't, and no one intervened, Phillips started swinging. He knocked the man to the floor of the bus and pinned him there. Other passengers summoned a police officer, who took the man off the bus.
Once after he got off a bus at 95th and Jeffery someone snatched his cane. A few minutes later another person returned the now-battered cane to him, explaining that the man who had taken it had used it in a beating.
Sometimes when he's walking down the street, people will ask him for 50 cents or a dollar. He pretends he doesn't hear. "I never will go in my pocket. 'Cause I know from other blind people that they will snatch your money from you. Or if you pull out a bill, they'll tell you it's a one and it might be a five." He also pretends not to hear the occasional taunter. In the interest of safety, he says, "I realize I have to be more humble."
People who are too anxious to help can also be a nuisance, he says. "Sometimes you start to cross the street and someone grabs you and pulls you across. I'm not a dog. These people mean well--they just really don't know. If you see a blind person and you want to help them, just ask, and offer them your elbow. I tell other blind people, sometimes you have to take the assistance even when you don't want it. Because if you reject it, someone else who's blind may come along who actually needs help. So think of your fellow blind brothers and sisters."
Phillips gets $900 monthly from social security. His rent is $258. Transportation costs him $78 a month. His phone bill is usually about $60 (his two children now live in Texas). What he saves on his electric bill is offset by what he pays for batteries each month--$10 for hearing-aid batteries, $10 for the batteries for the F.M. Personal Communicator. There's food to buy and the cleaners to pay. When his daughters (who are now 15 and 14) moved to Texas, he vowed that no matter how poor he was he would fly them to Chicago every summer to visit him; his folks have helped him meet this expense. He tries to save something for Christmas presents for them as well. "Every year I tell them, 'Next Christmas will be a better year.' It stings, because every Christmas that rolls around, you can't do for them in the manner you would like to. When I worked at the Board of Trade I got a Christmas bonus--'Hey, Merry Christmas everybody.' No strain. Now it's a squeeze.
"I have learned to do without," he says. "Instead of trying to eat three meals a day, I may eat just one--because food is high. My watch broke a couple weeks ago. [When it's working, it announces the time with the press of a button.] It's a pain in the neck to be out there not knowing what time it is. But it would cost $45 to fix, and I can't afford it right now. If my hearing aid breaks, it costs $85 to fix. I have to have my hearing aid. But $85 is a lot of money when you don't have it. I try not to worry about it. Try to just be grateful that I have a place, and not sit around complaining."
He doesn't have much sympathy for blind panhandlers. "I wouldn't put a dime in their cups. They're using their blindness to get money--and all of them get a [social-security] check. They further that stereotyped image of blind people as helpless. People put money in their cups out of pity: 'Oh, he's blind and he'll never be able to get a job--he can't do anything else.'"
When he interviewed unsuccessfully for all those jobs in '89, a few employers did express interest in him. They asked if he could type and use a computer. He told them he couldn't, and they were no longer interested. A college degree wasn't enough, Phillips realized. So he enrolled in an office-skills training program at the Lighthouse.
His typing speed rose from 13 to 55 words a minute during his year in the program. He typed with the aid of a "voice synthesizer"--a box plugged into the typewriter that announced the words as he typed them. With a voice synthesizer connected to a computer he also learned Word Perfect and Lotus. Being able to use a computer was a heady feeling, and sometimes he got giddy at the keyboard: he'd type "Praise Jesus!" and "Hallelujah!" just to hear the synthesizer proclaim it in its eerie voice.
He also worked on his writing skills in an English class at the Lighthouse and practiced his braille daily. But when he was through with the program in 1991, he still was unable to find a job.
That's when he started doing volunteer work, mainly to keep himself busy. He taught braille at IVHI. He started giving speeches for the Lighthouse. He participated in administrative meetings at his church.
He began work on his autobiography last fall, writing weekday mornings at a computer at the Lighthouse. He hopes the book will enlighten the general public about the lives of people with disabilities and hearten those among the disabled whose attitudes are now grim.
People sometimes ask him to talk to a friend or relative who's going blind. "They figure I may be able to offer some encouragement. I tell them that when the person sees me, they won't necessarily be encouraged. They could become even more frightened. That's just what they don't want to see--a person with a cane. When someone is going blind, he says to himself, 'No, not me.' They don't want to accept it. And until they get over that hurdle, there's nothing I can say, you can say, or anyone else can say to help. You have some people who are blind now who still haven't faced reality. They become introverted, they won't come out of their house, they're mad at the world.
"If a person is willing to listen to me, I'll tell them I went through the same thing--that I didn't just wake up and walk out like Superman saying, 'I'm blind, but I still can do most things.' I tell them how I contemplated suicide, because I didn't think there was any life for me. But that now I consider myself a much better person than I was when I was sighted. I tell them, 'I will not lie--being blind can be pure hell at times. You have to decide in your own mind that you're still going to do something with your life. And the sooner you can do something and move forward, the better off you'll be.' Then I try to find out what he or she likes to do. If they like to bowl or swim, I let them know, 'You can still do those things. You just have to do them differently.' I tell them they got an advantage over me. They say, 'What advantage is that?' I say, 'You can hear.'"
Until a year ago he was jogging three mornings a week. He and his partner, a short rope between them, would run around Stony Island Park, at 87th and Jeffery, several times, then up and down neighboring streets--a five-mile route. Phillips wore a jacket that said BLIND RUNNER in bold letters on front and back. They ran at 5 AM, when traffic was light. The first few weeks of running blind "you think about falling or running into a pole," he says. "You realize that you're completely at your partner's mercy." But in time he learned to run with confidence. He sustained just one injury, on a day when he ran with a different partner, a person who preferred running on the sidewalks; he sprained his ankle coming down from a curb. He quit running a year ago when his regular partner had to stop because of his arthritic knees.
"Derrick is definitely a stronger person now than before he lost his sight," his friend Angelo Poindexter says. "You hear it in the way he talks--he's so positive and confident now. In grammar school, high school, he always depended on someone else. When kids would make fun of him, he would kind of hide at my house, because he knew he wouldn't have to hear any of that there. When he got in fights, a lot of times he'd turn to his older brother for help. Now he's dealing with things himself. Sometimes you don't find out what's inside of you until you have to. A lot of people who went through what he did would have given up, taken to the streets, gotten into drugs or alcohol. Instead, he tightened up his belt and did positive things. Maybe it was to prove to other people--and to himself--what he could do. But he proved it."
Phillips's former rehab counselor, Jim Rhoades, says, "I've seen so many people use blindness as an excuse, and Derrick started off that way. But he doesn't do that now. He feels he can do anything anyone else can do, given a reasonable amount of time."
Says Phillips, "For the first time in a long time I'm not in heavy pursuit of a job, where a job is the only thing I'm concerned about. I think I've spent too much time trying to demonstrate that I'm capable of being employed. I don't think there's any question that I'm capable. But now I'm letting the right opportunity present itself."
His hearing continues to deteriorate slowly. The possibility of going totally deaf "has crossed my mind," he says. "I don't think it will happen. But I never thought I would be totally blind either. I try to savor what I have now."
Total deafness would be a greater disability than total blindness, he thinks. "I can't see you, but I can communicate with you. I can't watch television, but I can come home, turn on the radio, listen to a game, listen to the news. I still have access to the world. I think a person who is totally deaf would be more frustrated."
He frequently dreams that he can see again. He's in a grocery and suddenly realizes that he's staring at the grape juice, the orange juice, the apples and oranges--and he hollers out, "I can see this! I can see that!" Or he's riding in a car and it dawns on him that he can see, and he tries to fold up his cane but is unable to--and people start yelling at him, "What's wrong with you? What are you doing with that cane?"
When he picks up an apple, he says, "I have a clear picture of it in my mind." He can't fathom what it would have been like to have been blind from birth. He finds it odd that while his relatives and friends age, the image he has of them in his mind does not: he will always picture them as they looked to him a decade ago. He wishes especially that he could see his daughters today; in his mind's eye they're little girls, not teenagers.
He still harbors a hope that medical science will one day bring him out of his darkness. "You always want to see--I don't think you ever stop thinking of that. The important thing is not to dwell on it."
This winter Phillips has returned to school at Roosevelt. He's six semesters away from completing his master's in guidance and counseling. His tuition this semester is $2,000. The state rehab department is paying $1,200. Phillips paid another $250--$200 from money earned from his speeches to companies and $50 borrowed from relatives. He owes the school the rest. He has solicited aid from numerous companies that sometimes award educational grants; so far no luck.
He hopes to earn his master's by spring 1994. Then he'd like to get a job as a high school counselor--working with kids, whether disabled or not--or as a rehab instructor or counselor working with people with disabilities.
He says most employers who are reluctant to hire people with disabilities "don't mean to discriminate. I think a lot of them do it out of ignorance. When I was a supervisor, if a blind person came to see me about a job, I probably would have called someone to my office, said, 'Hey, get this guy out of here.' I would have thought, What can he do? He can't read my mail.
"People think that if they hire someone who's disabled they're going to have to do his or her work for them, they might have to take them to the bathroom, take them to the cafeteria. They feel like this person won't be dependable--and that if the person is late that they won't be able to say anything to him. But since disabled people don't have as many options, they cherish whatever job they get. Undoubtedly the first week they're going to look awkward. But once they get adapted to their surroundings, they'll be no problem."
Phillips likely will need some special equipment for whatever job he eventually finds: the voice synthesizer, a braille writer, perhaps a talking calculator. The state rehab department assists companies in purchasing such equipment.
For now, Phillips is content with his volunteer work and the sense of accomplishment it gives him. "When I was at the Board of Trade I had a money attitude--everything was money, money, money. If someone didn't have a job and wasn't making money, I thought there was something wrong with them. But I've seen that I can make a contribution even when I'm not getting a paycheck."
One morning at the Lighthouse Phillips showed me how the voice synthesizer works. He sat at a computer and tapped away. From a box plugged into the computer a male monotone declared, "Derrick . . . shift . . . Phillips . . . is . . . a . . . good . . . person . . . period."
Art accompanying story in printed newspaper (not available in this archive): photos/Lloyd DeGrane.