About one-third of parents with disabilities have experienced some form of discrimination, according to a recent survey conducted by Berkeley Planning Associates of 1175 respondents. But there are organizations and groups that can help defend parents' rights and quell attitudes grounded in misunderstanding.
A devoted couple with a healthy toddler battled to keep their family together this past fall after they were reported to the social services agency in their community. The mother has marked limb differences with limited use of her arms and no legs, but a social services representative insisted the investigation had nothing to do with her disability. The mother was required to demonstrate her ability to complete common child-rearing tasks that she had been performing for 14 months since her son's birth. Fortunately, after several months of frustration, the charges were dropped and the toddler was returned to his parents.
Unfortunately, events like this are not uncommon. In fact, about one-third of parents with disabilities have experienced some form of discrimination, according to a recent survey conducted by Berkeley Planning Associates of 1175 respondents. But there are organizations and groups that can help defend parents' rights and quell attitudes grounded in misunderstanding.
Through the Looking Glass
Through the Looking Glass (TLG) is a community nonprofit organization in Berkeley, Calif., that provides direct services, information and referrals to families who deal with any kind of physical and developmental disability. Founded by family therapist Megan Kirshbaum in 1982, TLG has become a leading research and training center, advocacy organization, and referral resource.
“Just recently we helped a father with a physical disability in a marital custody battle,” Kirschbaum said. Under a court order, the father's time with his son was being supervised. Armed with a legal precedent, the TGL Idea Book, and other resources, Kirschbaum and the father took the case to family court. The court reversed the supervision requirement, and the father is now allowed much more time with his child as a result of TLG's support.
Kirschbaum describes the Adaptive Parenting Equipment: Idea Book I as “a catalyst for problem solving.” The catalog contains 50 different photographs of prototypes of adaptive parenting equipment designed by TLG. Items in the book include baby care trays attached to motorized chairs, adaptations to cribs designed appropriately for a parent's specific disability, elevated play centers and harnesses for lifting young children.
“There's almost an assumption that a parent with a disability has to prove him or herself worthy to raise their child,” Paul Preston said in Nurse Week. “We want to inform people by showing precedent. Just because you have a disibility doesn't mean you can't be a good parent.” Preston is co-director of TLG's newest project, the National Resource Center for Parents with Disabilities, an organization created to help parents with disabilities. TLG was awarded a five-year grant to launch the resource center, funded by the National Institute of Disability and Rehabilitation Research, U.S. Department of Education. The Center will focus on issues of adoption, pregnancy and birthing, custody, intervention with parents with developmental disabilities, and baby care equipment and adaptations.
The Center will also continue TLG's mission of empowering parents and potential parents with disabilities by disseminating disability-appropriate information about parenting, disability advocacy, and legal, medical and social services providers. TLG's staff of nationally and internationally recognized experts in parenting with disabilities will provide consultations, and a national Parent-to-Parent Network of parents with disabilities will offer alternative means of connecting.
TLG's current staff and consultant team includes psychologists, social workers, marriage, child and family therapists, special educators, childbirth educators, occupational and physical therapists, rehabilitation engineers, and researchers. Nearly 80 percent of the staff have disabilities, are parents of children with disabilities, or have family members with disabilities. Preston and Kirshbaum also plan to set up a national database of obstetricians who specialize in care of mothers with disabilities and offer training for lawyers, nurses, and social workers, among others, on issues surrounding parenting with a disability.
Adaptive Equipment
One research project within the Bay Area involves facilitating adaptive strategies and developing adaptive parenting equipment for parents with physical disabilities and their babies (birth through age three).
Parent Empowerment Network
Because each family's situation is different, finding someone to relate to can be a comfort. A parent may be recently injured and in need of counseling or suffer from fatigue and need help carrying out certain tasks. Perhaps he or she needs advice on adaptive equipment or tips on traveling with a child. A great way to get in touch with people all over the country concerning disability and parenting topics is through the Internet. Wheelchair-user Trish Day serves as project director of a Web site that offers Parent Empowerment Network, an “e-mail community” for people who are or who care about parents, or prospective parents, with disabilities (ourworld.compuserve. com/homepages/Trish_and_John).
“Our list is about providing support, whatever the issues, to parents with disabilities,” Day told inMotion. “The general public does not see us as effective parents, and so when we need advice, it is hard to get that advice from non-disabled parents. They tend to think that if we have parenting problems, it must be because of our disability and forget that they may have experienced the same things.”
Parent Empowerment Network is a confidential e-mail list discussing topics such as accessible and independent parenting, societal attitudes toward parents with disabilities, pregnancy, childbirth, infertility issues, and general issues about childcare and child rearing. “Sometimes the disability is the real issue, like learning how to change a diaper with limited dexterity,” but the list members also cover topics from temper tantrums and potty training to teen peer pressure, Day said. Resources and articles regarding these topics are also available from the Website.
“It's great to have a group of folks who know exactly where we're coming from,” Day said. Discussing issues and asking questions about parenting with disabilities may help alleviate a problem before one arises. Connecting with parents with similar experiences and experts at advocacy groups who deal with parenting issues, from discrimination to adaptive devices, creates opportunities for invaluable support.
For more information on Through the Looking Glass, call (800) 644-2666 or (510) 848-1112, visit the TLG Website at http://www.lookingglass.org/ , or send e-mail to tlg@lookingglass.org.
