A ROOM OF HIS OWN: A special report

[Ursus]

Here's a follow-up about a half year after the above three-parter:

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The New York Times
A ROOM OF HIS OWN: A special report
When Living a Workaday Life Is a Miracle
By N. R. KLEINFIELD
Published: December 15, 1997

Last June, in a three-part series, The New York Times told the story of a severely disabled young man named James Velez and his long struggle to escape the world of institutions.

For reasons that confound medical science, Mr. Velez feels that bugs are crawling over him, and so he scratches his skin to the point of mutilating himself -- even though he falls within the bounds of what is considered average intelligence and knows full well the damage he inflicts. Shunted from institution to institution since he was 7, including a place that gave him electric shocks as part of its behavioral therapy, he was among the extreme cases bypassed as the national movement known as deinstitutionalization swept a majority of the retarded and developmentally disabled into the community.

Thirteen months ago, a Manhattan social-service agency named Job Path, hoping to demonstrate that even the most profoundly disabled people can live successfully with everyone else, at last satisfied his longings by moving him into an apartment in Ozone Park, Queens.

James Velez was getting ready for work. A frigid wind thumped against the windows of his Queens apartment. Rocky, his pet cockatoo, was yapping. Howard Stern was skewering someone on the radio.

''That guy breaks me up,'' Mr. Velez said. After a quick shower, he roved his bedroom for a pair of jeans and a T-shirt. His eyes flicked at himself in the mirror, and he was ready to go.

On a workday, he liked to eat at the Grant Coffee Shop. Wedged into a sagging back booth, he hungrily dug into a mozzarella omelet and bacon.

He was brimming with driblets of news -- about his job at Blockbuster Video, his driving lessons, his search for a bigger apartment, how he was becoming more blithely self-confident. These were everyday events for most 23-year-olds, but they were momentous milestones for someone who, for so many years and not too long ago, had almost no expectation of regularly earning his own paycheck or doing much of anything on his own.

A year into his transformed life, he was steadily discarding the burden of his past.

''I'm doing pretty good,'' he said. ''I have problems, but I'm trying to live a life. I'm trying to become somebody.''

In the early months after he crossed the great divide from institution to community, Mr. Velez's spirits and behavior gyrated unpredictably, and his platoon of round-the-clock aides felt frustrated at how tightly they were appended to him. In recent months, however, improvements in his attitude and routines have been in ample evidence. Though he is still irascible and scratches himself, sometimes severely, the form and tableau of his days have become tidier. He is slowly acquiring the habits of the ordinary.

''I do think that James has turned a corner,'' said Fredda Rosen, the project director of Job Path and the woman who first decided to take a gamble on Mr. Velez. ''I don't even know what it all was. I guess he needed a certain amount of time being in the apartment to realize it's not going to go away. We had some low points, but James is hitting his stride. He's so much more a part of the world than he was.''

To Ms. Rosen, Mr. Velez was a test case of the possibilities of the most shunned of the developmentally disabled. Now the agency -- and the State of New York, which oversees the budget of more than $200,000 a year for Mr. Velez and his roommate -- are sufficiently convinced of the success of the experiment that they are preparing to try more: Job Path, a project of the Vera Institute of Justice, recently received state approval to provide fresh lives for six additional people. It hopes to settle them into three apartments in Manhattan next spring.

Job Path's housing coordinator, Lisa Pitz, who worked unflaggingly to liberate Mr. Velez, has distanced herself from his day-to-day dealings to begin acquainting herself with the new candidates. With one exception, none comes close to matching Mr. Velez's intellectual acumen. Two use wheelchairs. One hardly speaks; another does not speak at all.

''Some of these guys are quite physically challenging,'' Ms. Pitz said. ''But I'm really pleased at how James has blossomed. It took me a lot longer to cruise into adulthood.''

''Hey, Mr. James-man, how's it shaking?'' a willowy co-worker at Blockbuster greeted him. He was always tweaking her that her curls looked like a Slinky.

''Doing O.K.,'' he said. ''How are you?''

 He took off his coat and arranged himself behind the cash register. Customers had queued up. He quickly settled into the incantatory phrases of video rental: ''Your card please,'' ''It's due back tomorrow,'' ''Have a good day.''

He was hearty and decorous. Work that he savors has buoyed his spirits. He had lost interest in an internship at the Brooklyn College radio station and in doing occasional clerical tasks at Job Path. Then, during the summer, his roommate, a severely retarded young man named Manny Sanchez, found his first job as a porter at a local McDonald's and swiftly graduated to four days a week. Mr. Velez was intensely envious. This could not go unanswered. He vowed to be hired at Burger King.

Job Path suggested Blockbuster. As it was, Mr. Velez was almost a daily presence there renting tapes. Angel Valera, the manager, liked him. In early September, he began working twice a week at the store, his first true job. His shift is from noon to 4 P.M. on Wednesdays and Fridays.

From the first day, Mr. Velez made it clear he did not want an aide shadowing him. He was going to work like everyone else. So an aide escorts him to the store, leaves him there, then accompanies him home. The day he had to put the price tags on the new ''Jurassic Park'' gift packages nearly killed him, but he has held his own. The co-workers are young and hip, and some days Mr. Velez shows up like them, wearing a close-fitting muscle shirt. One of the girls has promised to have him over for dinner.

''James has become part of the store,'' said Mr. Valera, who plans to give him a third day soon. ''He pretty much does most of the job that anyone else does.''

The opportunity has had a striking effect on his inconstant relationship with his father, Julio Velez. While his mother, Daisy, has been an unswerving supporter of his independence, his father has been more doubting. But three Sundays ago, he picked James up and told him, ''I'm going to reward you.'' Then he took him to Radio Shack and bought him something he dearly wanted, a cellular phone.

''You're a man now,'' he said. ''That's why I'm getting you the phone.''

''I know I'm a man,'' his son replied. ''I work.''

For years, it has been his reverential hope to drive a car. The first time Fredda Rosen met him, however, she wondered how he could travel on a subway, even with assistance. And yet a couple of Tuesdays ago, a horn honked outside his apartment and he clambered out and positioned himself behind the wheel of a Toyota Corolla for lesson No. 1 of a 10-lesson package.

Mr. Velez is a pint-sized 4-feet-5, and scarcely able to peer above the wheel. He was initially a little jerky. The instructor smiled thinly when he nearly lurched forward into a pickup truck. ''Sorry,'' an abashed Mr. Velez said.

''No, not to worry,'' the instructor replied. ''We're just practicing.''

Soon, though, Mr. Velez was tooling along in traffic with new-found ease. His hands firmly clenched the wheel. He was keen with undisguised joy.

''How am I doing?'' he inquired.

''Very good,'' his instructor replied. ''You just need practice, practice, practice.''

Mr. Velez nodded and drove on.

The bugs, of course, have not left.

In the tangled weave that is his life, he still finds himself gripped by lassitude and black moods. His scratching continues to oscillate wildly from day to day.

''Ultimately, he still itches,'' Ms. Rosen said. ''We can't just ride off into the sunset.'' Though often he goes a day barely touching himself, other days the bugs will not relent. His legs and back have been under siege lately and are raw from his scratching. ''I go up and then I go down,'' Mr. Velez said. ''I don't know why.''

Some months ago, his case was taken on by a team of specialists at the Mount Sinai Medical Center, including an internist, a gastroenterologist, a dermatologist, a neuropsychiatrist and a geneticist.

Yet, despite round after round of new tests, they remain as baffled as the many other doctors who have studied him.

Dr. Mary Jo DiMilia, who is overseeing his treatment, told him when he went in for a checkup the other week: ''We don't know why you itch. We think it's a combination of factors. We think there's a biochemical imbalance that we don't know about. There's also, for sure, some kind of neuropsychological imbalance going on.''

 Mr. Velez said back to her: ''I care about myself, but when it itches I don't care. I need to relieve it but it doesn't relieve until I feel pain. I seem to want to inflict pain on myself in order to feel better.''

He was highly uncomfortable. He locked his hands behind his back, gulped deep breaths, twisted his body like a contortionist -- anything to distract him from the bugs.

The doctors are trying new medications, including drugs to address compulsive behavior. Although he does not show classic symptoms of obsessive-compulsive disorder, the doctors feel there is a compulsive element to his actions.

Long hampered by a badly damaged right heel, which forces him to use a wheelchair outdoors, he had a skin graft from his hip in early October that has been healing well. A graft removed from his stomach was tried years ago, but it never took. Mr. Velez would say of the poor result, ''You don't walk on your stomach.''

The latest surgery, however, confined Mr. Velez to the hospital for nearly a week, the first time he found himself in what had been a regular destination in well over a year, and he had to miss several weeks of work. Disconcerted and reminded of harrowing images, he scratched more intensely. His doctors hope that the interlude accounts for the heavy scratching that has opened up some sores in recent weeks.

Dr. DiMilia asked him to try to eliminate caffeine -- he drinks a veritable flood of soda, coffee and tea -- and to eat more nutritiously. She gave him a diary to record his caffeine progress. Dr. Marcy Ferd schneider, a resident who also sees him, urged him to try to develop more regular hours. He often stays up late and sleeps till noon.

''I get up just fine for my job,'' Mr. Velez said. ''It's wanting to get up.''

They told him they were rooting for him, and when it was time to leave, he hugged Dr. Ferdschneider. Then he hugged Dr. DiMilia. Tears welled in her eyes, and she had to dab them.

Mr. Velez and Mr. Sanchez were sitting around the kitchen table. The mood was rather strained. Mr. Velez had sold his roommate two CD's for $13. Mr. Sanchez's habit is to acquire a CD, play it about 10,000 times in a row and then lose interest in it.

''I can't understand them,'' Mr. Sanchez said tartly. ''I want my money back.''

''Tough luck, buddy,'' Mr. Velez said. Any mercy he felt was compromised by the fact that he happened to be broke.

Mr. Sanchez stomped into his room and slammed the door.

For two young men with little in common and far apart intellectually, the close quarters sometimes lead to bitter games of thrust and parry. Their lives overlap a bit more than either would prefer.

One day, Mr. Sanchez was so mad at Mr. Velez that he pulled a shotgun out of his closet and threatened to shoot him, relenting only when Mr. Velez pointed out that it was a toy gun. (Mr. Sanchez believes that at some earlier date he was a police officer; hence the need for artificial weaponry.)

Their apartment is actually a one-bedroom in which the living room was reconfigured as a second bedroom. But recently, through a neighborhood appliance salesman he came to know, Mr. Velez found a full-fledged two-bedroom apartment, with a separate dining room and living room, in an adjacent neighborhood and at an equivalent rent. Assuming the details can be worked out, Mr. Velez and Mr. Sanchez hope to move in soon.

An equivalent rent is a must, for the annual budget of more than $200,000 in state and Federal money, less than was spent on Mr. Velez alone in institutional settings, has proved to be exceptionally tight. Shelley Azumbrado, Job Path's financial officer, was steadily injecting more monetary discipline in Mr. Velez. He now switches off the lights when he leaves a room. He doesn't play both his stereo and TV at the same time. He doesn't leave music on for his cockatoo when he goes out. ''I've told him, why waste $4 on directory assistance?'' Ms. Azumbrado said. ''Don't you have a phone book?''

With his earnings, though, it's in one minute, out the next. He stopped at the hardware store the other day, and spotted a flashlight of the sort police officers use. ''I'm in love with that flashlight,'' he said. He buys a new pocket-sized tape player about once a week. ''I collect them,'' he said. He did, though, recently cling to $70 for a record-setting two weeks.

 With Mr. Sanchez stewing, Mr. Velez decided he would go out for a walk. He didn't want his aide to tag along. Though someone continues to be assigned to him at all times, he has become less timorous about doing certain things alone. He wanders by himself to the park down the block. He goes to the bank and the barber alone. When the mood seizes him, he will catch the bus unaccompanied to see his parents and younger sister, Lydia.

''When he comes home, he's really helping me,'' Mrs. Velez said. ''He helps me with the groceries. He does the dishes for me. He does need to find other people. He was telling me the other day that Lydia has so many friends and he doesn't have any friends. He asked me, 'How do you make friends?' I told him that you meet someone and they introduce you to someone else and you go to the movies or bowling and you just click.''

Last Thursday, he traveled to Boston to tell about his passage and accept an award at the annual conference of the Association of Persons With Severe Handicaps, an advocacy group. For the first time, he flew on a plane. It got him musing about what exactly airsickness was.

At his elegant hotel, he ordered his first room service and promptly decided this was for him. ''Oh, man, this is a blast,'' he said. At the conference, he gamely spoke with the ease of a practiced after-dinner speaker. He was pumped. People lined up afterward to shake his hand.

Light raindrops clicked against the roofs of the parked cars. James Velez clattered in his wheelchair toward the main thoroughfare, its consumer franchises reverberant with activity. He wore his latest tape player, whose main feature was the ability to receive the audio off TV shows. He rumbled past the mini-market, the bakery, the Associated food store. Two men squatted in the parking lot playing cards. He decided he would visit his parents. He slid to a stop at the empty bus stop and bade goodbye to a visitor.

''I'm all right,'' he said. ''You don't have to wait. See you another time.''

He was out and about and he was entirely alone. And he was perfectly all right.

Photos: MORE THAN A JOB -- James Velez at Blockbuster Video in Queens. Severely disabled, he has been out of institutions for 13 months. (Don Hogan Charles/The New York Times)(pg. A1); THEN -- James Velez, center, being released Nov. 12, 1996, after 15 years in institutions. At first, the head of the group that arranged for his independent living wondered how he could travel on a subway, even with help. (Chester Higgins Jr./The New York Times); NOW -- James Velez, 23, leaving his apartment for his second driving lesson. ''You just need practice, practice, practice,'' his instructor said. (Chester Higgins Jr./The New York Times)(pg. B4)


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