One case stands out for Megan Kirshbaum, a psychologist in Berkeley, Calif. In late 1987, she received a call from a Santa Clara County official asking her to assess the fitness of a 20-year-old woman with cerebral palsy to raise her infant son. Child protective service officials could not see how Tiffany Callo, a person whom they considered both disabled and immature, could safely care for the child. They wanted Kirshbaum to back them up so they could prevent Callo from having custody of her child.
Something about the tone of the call intrigued Kirshbaum. She spent a few sessions with Callo, who listened eagerly to Kirshbaum's advice on how disabled parents can overcome obstacles such as infant fears of wheelchair motors and inconveniently designed cribs. Callo was determined to be an effective parent. At the end of the consultation, Kirshbaum was convinced--but not by the county's case. The psychologist volunteered to testify in court against the county in Callo's effort to reclaim custody of her son.
The battle proved unsuccessful. But word of Kirshbaum's affinity for parents with disabilities began to spread, just as her research on the subject was accelerating. With a $5,000 March of Dimes grant she turned a garage behind her house into an office and research facility. With another $25,000 from the National Easter Seal Research Foundation, she bought a video camera and recorder and began to gather data from the wisest sources she knew: disabled parents.
Her husband, Hal, was her partner in this venture until the progression of his multiple sclerosis made it too difficult for him to help.
She had named her new nonprofit agency Through the Looking Glass, a playful tribute to Lewis Carroll and the notion that disabilities ought to be seen from a new angle. More than a decade later, Kirshbaum's research has put her squarely at the center of a community of psychologists, infant specialists, occupational therapists and social workers who want to help Americans with disabilities raise their children. With a $2.5 million, five-year grant from the U.S. Education Department's National Institute on Disability and Rehabilitation Research (NIDRR), she has established the National Resource Center for Parents with Disabilities with codirector and medical anthropologist Paul Preston, the son of deaf parents.
Thirty-five staffers, most of whom have personal or family experience with disabilities, work out of a Berkeley office building. They take a growing number of calls from young disabled people who have had children and need advice.
The creation of the center comes at a time of increasing visibility for disabled parents. A study by Berkeley Planning Associates estimates that 7 million parents with disabilities have children under age 18 living with them. Compared with disabled adults without children, the study shows, disabled parents are more likely to have attended college and to be working. They also have higher household incomes, although their average income is substantially lower than that of nondisabled parents.
Some disabled parents acknowledge, however, a lack of motivation or ability to make parenting work. But with simple supportive devices, say leaders in the field, most people who are disabled can raise their children. Motivation and intelligence are more important than lifting and walking ability, research shows. Once a house or apartment is set up to ensure the safety and convenience of both parent and child, families with disabled members can thrive. In case after case, able-bodied children of disabled parents move into adulthood with all the skills of children raised by non-disabled people.
The amusing quirks and occasional dramas of disabled parenting have been vividly brought to light in the book "The Question of David: A Disabled Mother's Journey Through Adoption, Family, and Life." The author, journalist and critic Denise Sherer Jacobson, is a friend of Kirshbaum's and a fellow researcher.
Sherer Jacobson and her husband, computer scientist Neil Jacobson, both have cerebral palsy. They use wheelchairs and speak with unusual rhythms and pronunciations that are difficult, at first, to understand.
But as a writer, punching at the keys of her computer, Sherer Jacobson cuts swiftly through the communication barrier and lays open her life in unsparing terms. She confesses her doubts about career and love and marriage and provides a stunningly frank account of sex between two tender but physically awkward adults. She also confronts her initially sour attitude toward her husband's dream of adopting a child. "For Neil and me," she said, "trying to adopt a baby seemed as silly and futile as a dog chasing its own tail." But that is exactly what they did.
The story of the Jacobson family encapsulates the work of Kirshbaum and her staff: first, raising the possibility that people with disabilities might have children and, second, helping them figure out how to do it without setting themselves up for failure or causing professionals to question their competence.
"Parents with disabilities are still having a very hard time locating resources, so the new center will be making a huge effort at outreach and networking," Kirshbaum said. "One of our frustrations is that people call needing services that must be locally based to be effective--an attorney, home-based intervention, a customized crib." The center plans to compile databases of professionals who have worked with disabled parents.
Much progress has been made, Kirshbaum noted, since she got involved with Tiffany Callo. At Callo's custody hearing, Kirshbaum told the court that children adjust quickly, even as infants, to a disabled parent's slower pace. She said active children who can be difficult to diaper for a person without a disability will often be "incredibly still and patient for a disabled parent."
In the end, Callo surrendered custody under an agreement that promised regular contact with her son, David, and a second son, Jesse, born in 1988. However, the adoptive parents have not complied and the courts have not sided with Callo in her efforts to restore contact.
Such tragedies, Kirshbaum discovered, were common. Now she wants to add a civil rights attorney to the center's staff.
Sherer Jacobson says Kirshbaum and her staff make a difference not only because they enlighten so many officials unfamiliar with the lives and dreams of people with disabilities but also because they don't preach or impose their own judgments on those whom they serve. "The staff have always let parents take the lead in determining the needs and solutions for their own families," Sherer Jacobson said. "And now the creation of a new resource center will offer much more access to practical solutions and less isolation for parents with disabilities."
The Web site for Through the Looking Glass, www.lookingglass.org, identifies more than 100 organizations that can be helpful for people with disabilities. The group, whose phone number is 1-800-644-2666, also has a book with ideas for adaptive parenting equipment.
CAPTION: A woman in Berkeley, Calif., carries her daughter in a pack developed by Through the Looking Glass, an agency that serves people with disabilities.