Debbie and Tim Howe, happily married for 19 years, enjoy a typical suburban-American lifestyle.
Both work. Tim tidies the dining room and parking lot for Hardee's restaurant and Debbie does the same for Brackman Bros. Bagel Bakery. They're buying a condominium in Holladay, they own two dogs, two guinea pigs and a hamster named Angel.The difference between the Howes and other couples is both Tim and Debbie have mental disabilities.
To some, this means the Howes and others like them need to live under the constant scrutiny and care of a relative, guardian or social worker. But contemporary thought, especially among modern psychologists and social workers, opposes that notion.
"We like to focus on their abilities, not inabilities," said Linda Pierson, case manager for the Division of Services for People with Disabilities, Utah Department of Human Services. "We encourage them to do whatever they can. Our push is toward as much self-determination as possible."
The Howes' experience argues that the personal growth and happiness of those with mental disabilities requires more, not less, autonomy.
"I really like living with just my husband," 39-year-old Debbie said, with her infectious smile. "I'm happy. I really love him." After 19 years of marriage, Debbie still fondly remembers the day when the now 42-year-old Tim proposed to her.
"He took me to a movie show and he proposed to me in there," she said. "He asked me, `Will you marry me?' My mouth dropped open. Then he gave me a ring."
Debbie couldn't remember the movie's name, but Tim did.
"It was `Caveman,' " he grins.
They dated for a few months before getting married. "He brought me flowers," she said. "We went to shows, to dinner and bowling."
Tim is the quiet one and leaves most of the talking to Debbie. She enjoys discussing everything from her job to adorning their newly purchased condominium - one of her favorite pastimes.
"I like to decorate and make our home look nice," she said, pointing to the matching pieces of furniture in their living room. "I like lots of plants too."
Although Tim and Debbie don't drive, Tim enjoys examining various types of automobiles. "I like cars, any kind of cars," he beams, holding up a model of a Rolls- Royce sedan. "I also like to ride bikes."
Children, of course, often follow marriage. For the Howes, that decision was especially difficult.
Having been counseled about the enormous responsibilities - financial and otherwise - children bring, the Howes decided children weren't in their future. "My mom thought we shouldn't have kids," Debbie said with deep reflection. "We talked it over when we first started out. We were really concerned about not having enough income. We have five animals, and I love animals. Those are our babies."
"We have a bird coming on its way, too," Tim chirps in with his disarming grin.
Debbie believes they made the right decision. "In the long run, it didn't seem worth it (having children)."
Tim and Debbie met in 1974 at the Columbus Community Center, a Salt Lake City enterprise that assists those with disabilities. But the Howes were fortunate. Some people with mental disabilities find it difficult meeting others with whom they can relate and associate.
Life hasn't been quite so sweet for 23-year-old Mark Campbell. (To preserve privacy, "Mark Campbell" is a pseudonym.)
At times Mark feels like a sailboat contending in a societal ocean of speedboats.
Mark lives with his mother, Sandra, in their West Valley home. His mental capacity is termed "educatable," sometimes referred to as "higher functioning." He works full-time in a local grocery store and has a reputation for dependability and working hard.
"He reads fairly well but isn't able to drive," Sandra said. "His thinking processes are a little too slow for that."
Mark one day would like to live on his own, but he's pragmatic enough to wait for the right time. "I think about moving out all the time," he said. "But it's expensive even to get an apartment these days."
Sandra concurs. "It's his goal and my goal for Mark to become independent," she said. "Because of the housing market, it's not financially feasible right now. Mark will always need someone to check on him from time to time - someone he can call on for help."
Despite his excellent job performance, he finds it difficult to make friends at work.
"Some of them I get along great with and some I don't," he said. "Some are kind of mean. Sometimes they tease me or make fun of me, especially when I talk about a girl." It hurts when people make fun of him, but "I try to just laugh it off. There's people like that everywhere."
"The thing that's tough with Mark is he doesn't fit well into any group," Sandra said. "He's an in-between type. If you were to look at him, he doesn't look any different from anyone else." She said some of his co-workers can be cruel.
"Some of the girls will tell him, `Give me a call,' and act like they really like him, more than just as a friend, when they have no such intentions," she said. "I know it hurts his feelings. I talk with him and try to help him work through those things. He's childlike in a man's body - but he wants what other people want."
Mark would like to date and some day get married. "I'm trying to look for a girlfriend," he said. "It's kind of hard though. Sometimes I get nervous when I get around them. I'm not good at making the first move. If I find the right person, I would like to get married."
Sandra and Make have discussed sex; she's taught him appropriate behavior with women.
"His big goal is to be on his own with a friend or maybe a wife. From my standpoint, it would be a wonderful thing," she said.
Mark is pragmatic about having children as well.
"Sometimes I think it's a good idea and sometimes I don't," he said. "The main problem is they're noisy."
Sandra agrees. "I don't want to say across the board that people with mental retardation shouldn't have kids," she said. "But it's such a tremendous responsibility. It wouldn't be fair to the child."
But, Sandra points out, Mark is an adult with the legal right to make his own decisions.
"All I can do is talk with him and discuss things. If you can explain it well enough, he can usually understand and make good decisions," she said. "His ability to take care of someone else is limited. I personally don't think it would be a good idea."
Often, it's the "higher functioning" individuals, like Mark, who encounter the most difficulty with socializing, especially with dating issues. Almost paradoxically, people who have a more pronounced mental disability seem able to meet and make friends easier.
Deborah O'Dell, consumer advocacy specialist in the Division of Services for People with Disabilities, said the higher functioning people with mental disabilities are "intelligent enough to know what they're missing and to be self-conscious. They go to their jobs and go home, so they're fairly isolated.
"It's hard enough being single - period," she said. "But it's even harder for those with mental disabilities."
Nancy and Gerald Christensen of Salt Lake City say their son Gary, 31, who has been diagnosed as having "moderate mental retardation," has no trouble making friends and going out on dates.
"He enjoys going out with all of his girlfriends and he doesn't pit one against the other," Nancy said. "I guess he's kind of a playboy He has five or six girls he goes out with and he throws in a new one now and then."
Gary's dates are somewhat supervised. "We provide the transportation by taking them to the movies or wherever they want to go," she said. "But we don't stay with them. We want to promote independence."
Gary, a tall, gregarious redhead, just likes to enjoy himself. "I'm still young and I like to go out and have fun," he said. "I'm not a married man, so no one has no right to get jealous."
Gary works during the day at the Work Activity Center, a Salt Lake-based, nonprofit sheltered workshop, assisting lower-functioning clients with their activities.
"Gary cheers up the other clients," Nancy said. "He has a really good sense of humor."
The Christensens have "encouraged independence since Gary was very young." Gary likes to go to the Wendover casinos with the family and go off on his own. People know him over there, Gerald said.
"We give him some money," Gerald said. "Then when he wins a little, he puts it in his pocket, and comes to me and asks for more. That's pretty smart."
Gary also likes to shop in malls. On one occasion he became lost. "I wasn't lost," he protests. "I just had more time to shop."
Gary may not have problems getting dates, but he has no desire for marriage.
"I like the women just the way they are," he laughs. "It costs too much to get married."
Nancy said it's important for parents to teach their children, including those with mental disabilities, about sex and appropriate behavior while dating.
"I think about 75 percent of the parents I've talked to do not teach their kids (with mental disabilities) about sex, courtship or marriage," she said. "I see grown-up adults with the emotions of an adult, but still a child mentally. They should be taught about their feelings and sexuality at an early age. A classic statement I've heard is, `My daughter's never going to be alone with a boy, so we don't need to teach her about sex.' That doesn't make sense."
Bill of rights
The passage of the Bill of Rights for the Mentally Handicapped by the United Nations General Assembly in 1971 was an impetus for worldwide change. Some of the provisions of the bill include the right to:
- be taught appropriate public behavior which will allow them to express their interest in and affections toward other persons in a socially acceptable manner.
- receive sex education at whatever level of specificity and detail they can comprehend.
- love, and to be loved, and the right to sexual fulfillment in a socially acceptable manner.
- marry and have access to birth control services.
Who can help?
The following organizations provide social and educational assistance to those with mental disabilities.
- ARC of Salt Lake County, 359-0094
- ARC of Utah, 364-5060
- Utah Parents Center, 272-1051
- Hartvigsen School, 268-8585
- Camp Kostopulos, 582-0700
- After Hours Social Club, 486-5473
- National Ability Center, 649-3991
- The REC Connection, 261-5278
- Utah Special Olympics, 363-1111
- S'PLORE, 484-4128
- Hilda B. Jones Center, 268-8526
- Individual public schools