Gene Weiss, 73, is a pretty special guy to the people who know him. It’s not just the big smile and cheerful disposition. Or the fact he used to be a big tease and practical joker. Or the fact he is a happy person despite living with severe physical disabilities. All those things are true. Just ask his guardian.

“Gene is so appealing,” said Janet Ferguson, of Wichita. “He is so thoughtful of other people. Usually he is real cheerful and friendly. Everybody says he’s so good-looking with his pretty blue eyes and smile. He cares about other people. He really doesn’t complain much, with all that he has gone through in his life and his limitations.”

Besides all those admirable traits, Gene – who moved to Winfield State Hospital & Training Center in 1948 when he was 11 – has found ways to help other people. The most obvious is his work to raise money for the Muscular Dystrophy Association.

“He has been collecting for the MDA since at least 1980,” Janet said. “John, a friend of his at the state hospital, had been collecting for MDA but one year was in the hospital and asked Gene if he would do it. John and Gene then collected together for many years. Gene appeared on the MDA telethon in Wichita at least twice.”

In a different role, Gene has taught many people how individuals with disabilities wish to be treated.

“Staff who have had the opportunity to work with Gene have learned some very valuable lessons from him about how people who need support need to be treated,” said Sarah Emrick, CCL’s deputy executive director. “We’ve probably learned more from Gene than he has learned from us.”

When Gene was born in 1937 to Martin and Martha Weiss, he had cerebral palsy and mild retardation – probably due to a lack of oxygen during his birth. He lived at home until his mother could no longer care for him.

Janet, who was his social worker at WSH from about 1976 until 1992, and Sarah, his unit director from approximately 1987 to 1992, both recall his mother’s continued devotion to Gene, decades after he moved to the hospital.

“His mother always came to see him once a month, even when she was really elderly,” Janet said. “She had to find someone to bring her, once she couldn’t drive anymore, but she never missed. She was always there on holidays and would bring him fried chicken and pie. She always dressed up and wore high heels and had her hair done just perfectly.”

“She was a delightful woman,” Sarah added. “Gene had such a bond with his mother.”

Janet recalled that Gene’s mother lived in Wellington, Udall and Oxford. After her death, Janet became Gene’s guardian in 1996 or 1997.

“Gene has always had the most cheerful disposition,” Sarah said. “He knew all the staff and a lot of the other clients at the state hospital. He had a special bond with several staff members and was quite the joker and big tease. He knew the comings and goings of everybody on the unit.

“Gene liked to sit in the hallway and was affectionately called the official hall monitor,” she said. “If you wanted to know where anyone was, you just had to ask Gene. He could tell you who was there, when they got there, and if they were late.”

“He has friends wherever you go,” Janet said. “He used to participate in Special Olympics and made friends that way. He never forgets anybody.”

When Winfield State Hospital was being closed, Gene moved to a community living facility in Wichita in 1996. Within a few years, a gastrostomy tube was inserted to provide Gene’s nutritional and medication needs, and the agency could no longer provide the services he required. He spent several months in a nursing home until there was an opening at CCL’s 12^th Street residence for medically fragile individuals. Gene moved there just before Christmas in 1999.

“When he moved back to Winfield, there were a lot of people he knew and who knew him – both staff and other clients,” Sarah said.

A nurse is on duty 24 hours a day at the 12^th Street duplex. Rachel Owens has been one of them for the last four years.

“Gene is my sunshine every day,” she said. “When I come in, he’s always smiling and tells me he misses me. He makes my day just like I try to make his day a good day.”

Rachel and the other nurses give Gene his gastro-meds (food and medicine) every four hours through his gastrostomy tube.

“We change the tube every month or as needed,” she said. “We also change out any medical equipment monthly. We give Gene breathing treatments, watch for skin integrity issues, and monitor him for signs and symptoms of illness.”

Sometimes they assist staff members with Gene’s frequent repositioning.

A physical therapy aide provides range-of-motion exercises for his upper and lower extremities five days a week.

“For being medically fragile, Gene really has good spirits and tries to make the best of every day,” Rachel said.

Richie Villa, who has provided direct care for Gene and others at 12^th Street for 2 ½ years, said Gene didn’t really want his assistance in the beginning.

“As we got to know each other, Gene grew to like me, and we could go on outings,” Richie said. “We would stay a little longer and talk along the way. He grows on you. You can visit as long as you have learned to interpret what he says. The longer you work with him, the easier it is to tell what he means.”

Gene can speak 30 to 50 words, up to three at a time. It generally works well to ask him “yes” and “no” questions.

“Gene loves little children, having people visit him, and riding around in the community,” Janet said. “He likes to go grocery shopping and going to Wal-Mart. A couple times he went to the Crown Uptown Dinner Theatre in Wichita.”

One of Gene’s favorite places for an outing is the Oxford cemetery, about 10 miles from Winfield, so he can visit his mother’s grave. When Gene asks to go to the cemetery, staff members take him and see that he has flowers to leave on her grave.

Staff members have also helped Gene raise money for the Muscular Dystrophy Association. Several years ago, some of them made a quilt, and he sold chances for an opportunity to win it. He has also sold paper shamrocks and held bake sales in Meyer Hall. When Labor Day weekend arrives this year, Gene is counting on making a return trip to the telethon in Wichita.

Janet and Sarah both wonder how Gene’s life would have been different if, in his early years, he had had access to the physical therapy, braces and other equipment available today, and if the public had been more accepting of those with developmental disabilities.

“When Gene was a child, anyone with severe physical disabilities lived in an institution,” Janet said. “There were no laws requiring public schools to accept physically disabled students. Gene might not have been diagnosed as mentally retarded if he had had a chance to go to school.”

 “If Gene had been born today, there would be so many more supports available – infant and preschool programs, public school classes and adult services,” Sarah said. “His physical deformities might not have been so severe. Physical therapy, occupational therapy, bracing and splinting – had they been available earlier in his life – could  have changed what he needs today. There is so much more known now about conditions similar to his that could have improved his quality of life.

“Services and supports, like those available through the Home- and Community-Based Services waiver program, will continue to make a lifelong difference for individuals,” Sarah said. “Even the supports that came into Gene’s life later on have helped. If we lose the programs now available because of budget cuts, it’s going to be detrimental to many individuals and end up costing more in the long run.”