In recent years, through advances in technology, changing social attitudes and new legislation, people with severe handicaps have achieved independence unimaginable a generation ago. Both the Earls went to college. In 1988, they moved to an East Lansing apartment, assisted 17 hours a week by social-service aides. Though unemployed (Bill is looking for a job), they were a model, mainstream couple.
All that changed last year, when Leigh got pregnant and decided not to have an abortion. Who, concerned friends asked, would care for the child? The Earls were convinced that, with some extra help from the aides, they could. “All we’re asking for,” says Bill, “is a chance to have a family.” As soon as she became pregnant, Leigh says, she started asking Ingham County Department of Social Services (DSS) exactly what they would provide but never got an answer. It took Mark Cody, an attorney from a nonprofit advocacy agency, to discover that, since the Earls didn’t work outside the home, they didn’t qualify for state-funded child care. (By then, Leigh was in her seventh month.) Since Leigh delivered a healthy daughter on May 5, volunteer nannies have moved in to help. The DSS aides who come to the Earls’ home aren’t permitted to help at all, even to pick the baby up. Natalie’s parents cannot lift or bathe her, but Leigh is able, with assistance, to breast-feed. “The system has not been set up to handle this kind of a case that is so different,” says DSS spokesman Chuck Peller. “It’s just not equipped.”
Many Americans with disabilities are deciding that if they can live and work in the mainstream, they can also have children. But if they need extra child care, who pays? If the state does, says Janet Strope, DSS director for Ingham County, there are bound to be problems. Any parents with some sort of impairment, as well as parents who abuse drugs or their kids, “could keep their children if we would provide someone in the home 24 hours a day. That carries it to an extreme, but we would then have to draw a line as to when we would provide [help) and when we wouldn’t. That would be very, very difficult to do.” The Earls are willing to challenge the state. “What Bill and Leigh are doing is really breaking new ground for people with severe disabilities to be parents,” says Marsha Morse, a project coordinator at United Cerebral Palsy of Michigan. “There currently are no programs that support people with disabilities to do parenting.” She thinks Bill and Leigh “deserve the opportunity to try. They can be parents, but not in the traditional role.” In the last 20 years, the definition of family has changed radically. Clearly, it’s also time to rethink the definition of parent.
