Greg Naccarato had to start over.
For him, that didn't mean moving to a new city, making new friends or beginning a new career.It has meant learning very basic things, like how to hold his silverware so he can feed himself, how to cook, how to pick things up when he drops them.
Naccarato has been a quadraplegic for 2 1/2 years, since he fell off a rock at age 19 while rappelling in Little Cottonwood Canyon. He described the intervening 30 months, which he calls "a bridge between the two parts of my life," as a combination of events filled with fear, anger, frustration, victories of all sizes and the determination to adapt.
A large part of his adapting process has been helped by the Independent Living Center, a non-residential program where individuals with any type of physical, mental or emotional disability can get the help they need to regain control of their lives, make their own choices and be as independent as possible.
"Often, society has the attitude that if it can change someone to make him fit in, things will work out," said Debra Mair, director of the Utah Independent Living Center in Salt Lake. "We say, 'Hey, I'm a person. I have a disability. That's not going to change. So what kind of changes can I make so that I can go to movies, restaurants, live on my own, whatever?"
"We don't put as much emphasis on vocational training as on becoming self-reliant. We want people to be able to live a life more of their choosing, to have an opportunity to do what everyone else does."
Mair, like most of those who work at the center, knows about disability. She has been in a wheelchair since she broke her neck when she was 16. Despite her injury, she earned a bachelor's degree in psychology, then became a counselor at the Independent Living Center and worked her way up to director, a position she's held for three years.
"ILC is a consumer-run organization," Mair said. "The people who come to us for help are not clients or patients. They're consumers and we're peers.
When you go to the store, if you want grapes, you buy grapes. That's making a choice. At the Independent Living Center, we show people they have choices, we help them find what those choices are, then work together to implement them."
The center, principally funded by federal money and grants, has a mandate to serve cross-disabilities and all age groups. More than half of the staff members, by law, are disabled. And emphasis is placed on not duplicating existing services. If, for instance, someone who is blind needs services that are already in place in another program, the center staff will make referrals.
For services not provided elsewhere, staff members sit down with the consumer and design individualized programs to meet a variety of needs.
Naccarato, like many of the Independent Living Center consumers, started out in a support group, where he was able to talk about what had happened to him with other people who really understood his feelings, frustrations and fears. Such a group also offers the value of shared experience. "I could ask someone where he goes for recreation, or how he does something, and get ideas from someone who had come up with a solution to one of my problems," he said. "Sometimes when I tried the solution, I had to modify it to meet my needs, or I saw a different way to do it, but it was a real, concrete place to start."
In addition to support groups, the ILC also provides information and referral, maintains a registry of attendants to assist those who are looking for one, makes housing referrals, offers independent living skills assistance and training, in-take counseling and a number of classes. The center has a special telephone for deaf consumers.
Classes include assertiveness training, communication skills, financial benefits counseling and budget management, goal setting, cooking and nutrition, pre-vocational social skills, basic math, Braille, building better friendships, personal care, attendant management, adjustment to disability, consumer skills and civil and consumer rights. Creative writing and computer classes are available. Consumers can also learn about transportation options and receive help locating equipment and aids. The list of services is long, and changes are made as needed.
"We tend to attract a lot of people who are more physically disabled," Mair told the Deseret News. "A large portion of our clients are either quadraplegic or paraplegic. Many disabilities, like blindness, have already been focused on and programs are in place. We try to develop systems for people who have fallen through the cracks of other programs. But we never turn anyone away if we can help him.
"The first thing we ask is, 'What would you like to be able to do?" The services we provide need to be such that a person will benefit. Although we do some counseling," Mair said, "we are not looking to provide it on a long-term basis, although we are fairly long-term -- usually three to four years."
According to Mair, the Independent Living Center concept began when people who were disabled but "had kind of made it" wanted to get together and share what they had learned-- "their secrets to survival,"-- with others. "There's a belief that if you can't buy something, it's not available," Mair laughed. "We're becoming expert at creating what we need."
Every aspect of ILC has self-reliance and self-advocacy built in. "People need to gain skills rather than become dependent on us. We're aiming for success, but success comes at different levels," Mair said. "For someone who's lived at home, and had parents handle their money, learning to do it on their own is great. That's success. Society tends to set your value and prestige based on your job. We try not to do that. We value you for who you are, rather than what you earn."
During one session of a recent conference on disabilities, moderated by Mair and Helen Roth, director of the Options for Independence program in Logan, disabled participants talked about some of the forms success can take.
"For someone who has always lived in a nursing home," Roth said, "moving out is a really big thing."
"What I remember," Gary Price, Tooele, told the others, "is when I learned to roll over for the first time in bed by myself so I could sleep the way I want."
One of Naccarato's early successes came when he moved out of his father's house and into his own, specially adapted apartment. "Dad had to almost kick me out. I lived with him for a year when I got out of the hospital. I was scared-- and almost completely dependent. Moving was hard, really hard," he said.
In a quick glance around Naccarato's apartment, it is easy to spot differences from most homes. For one thing, the table, desk, counters, refrigerator, --everything-- are shorter.
"One thing I'll never be able to do," he said, "is reach high places." Most things, like drawer handles, have a loop of fabric or string through them so he can pull them open. "I can do a lot here. I can pick things up if they are light and I can get a grip on them. These 'hooks' help me do that." He uses handles to help him hold a pencil so that he can type. He cooks his own meals, and does some of the clean up, but he said that some tasks he could do are "so time-consuming for me, it's just a waste of time."
He has taken recreation classes, including a camping class where he learned the importance of extra padding so he doesn't get bed sores. He enjoyed a physical education class for the disabled, which focuses on how to maintain health and muscle tone. But the equipment is not very accessible.
With every task he masters, Naccarato finds there are other things he wants to be able to do. He attends the University of Utah, riding a bus every day. In bad weather, he stays home. Soon, he hopes to get a car equipped with hand controls so he is not "at the mercy of the bus lines. "Transportation," he said, "is one of the biggest problems for those of us in wheelchairs.
"Learning stuff comes in phases. I really want to be able to get myself into bed and up in the morning. When I wake up, I am stuck until the person from Community Nursing gets here. The rain woke me up this morning and I had to lie there for 45 minutes. It's a really helpless feeling."
Naccarato also wants to learn to transfer himself from his wheelchair to the couch. "That couch," he said, pointing, "is just for guests. I haven't sat on it once. I'd really like to."
"Every time someone accomplishes a so-called impossible task," Mair said, "it broadens his horizon a little. You learn you can work a computer, then you might want to try painting. That's what we're about. Learning what you can do. And creating new ways to do them.
"When we're through, you may still need help to get out of bed in the morning, or to mop your floor. But that's OK. Because you're still in charge of your life. You make the choices."