"Mary" and her live-in boyfriend were ecstatic to learn that they were expectant parents--until Mary's parents punctured their bubble of joy. Although their daughter was independent and gainfully employed, they felt that her moderate cerebral palsy rendered her physically incapable of the responsibilities of motherhood. So they began pressuring her to have an abortion. The plight of Mary is not uncommon among people with disabilities. If they want to become parents, they often must deal with others' discouragement and interference.
"Disrespectful comments or behavior of strangers can undermine a parent's self-esteem during pregnancy," says infant/family therapist Megan Kirshbaum, PhD, executive director of Through the Looking Glass (TLG), a nonprofit organization that offers services to and conducts research and training on behalf of families in which a child, parent or grandparent has a disability. "For instance, a stranger told a noticeably pregnant woman with cerebral palsy that she couldn't be pregnant."
For Kirshbaum and other clinicians in the disabilities community, such biases make parenting the "last frontier" of disability rights. They're also one of the reasons Kirshbaum, whose background is in infant mental health and whose husband has multiple sclerosis, founded TLG in her renovated backyard garage 21 years ago. The organization began with a $5,000 grant from the March of Dimes and Kirshbaum's dream of bringing disability culture and personal family experiences into intervention and mental health services for infants, young children and adults.
Two decades of innovations
Since then, TLG has moved to a modest and bustling office. Its staff includes about 40 psychologists, occupational therapists, developmental specialists, family therapists, researchers and social workers. About 80 percent of the staff members have a disability or, like Kirshbaum, have a family member with a disability.
Over the years, the organization's pioneering research on parents with disabilities has inspired the staff to develop innovations in therapy and early intervention, as well as to create assistive baby-care equipment, such as wheelchair lap trays for nursing, and baby lifters. Such adaptive parenting equipment is arguably one of TLG's most important contributions. According to psychologist David Gray, PhD, associate professor of neurology and occupational therapy at Washington University in St. Louis, parents with disabilities often face custody battles over their parenting abilities, and these devices make it possible for them to prove their functionality to judges.
TLG is also a recognized leader in the national disability movement. In 1998, it received a five-year grant from the National Institute on Disability and Rehabilitation Research (NIDRR) and the U.S. Department of Education to establish the National Resource Center for Parents with Disabilities. The center provides information, referrals, publications, training and consultations on parenting to individuals with diverse disabilities, as well as deafness.
But for countless new or expectant mothers, such as Mary, TLG is a lifeline.
"What parents with disabilities need is the support from other people with disabilities [who can affirm] that they're going to be able to do a good job," says social psychologist and bioethicist Adrienne Asch, PhD, a board member of the Council for Responsible Genetics who has written extensively about reproductive issues, including prenatal testing and disability rights.
Research in a 'new key'
Some psychologists partly blame inadequate or flawed psychological research for the misperception that many people with disabilities can't handle parenthood. In their paper, "Parents with physical, systemic or visual disabilities," published last spring in Sexuality and Disability (Vol. 20, No. 1), Kirshbaum and clinical psychologist Rhoda Olkin, PhD, identified three major problems with most of the few published studies on parents with disabilities:
Pathological assumptions frame most studies, revealing "the widespread belief among professionals that disability severely limits parenting ability and often leads to maladjustment in children," write Kirshbaum and Olkin.
Research typically fails to consider fundamental distinctions among disabilities, such as types and levels of functioning. For example, a mother unable to get out of bed, an employed mother with a visual impairment and a mother with an intellectual disability might be grouped together and compared with "normal" controls.
Studies often confuse correlation with causation. When disabled parents have troubled children, for example, researchers often presume that the disability caused the problem, without considering contextual factors such as poverty, parents' history of being abused as children, substance abuse and a lack of adequate support.
"The assumption of pathology of parents with disabilities is so pervasive that this area of inquiry requires research in a new key," says Olkin, a clinical psychology professor at the California School of Professional Psychology in Alameda and TLG researcher. Olkin, a mother who has a polio-induced physical disability, is currently conducting research on disabled parents with teenage children.
Social psychologist and bioethicist Asch says that a lack of familiarity may be one reason for professionals' biases toward people with disabilities. "Very few professionals know people with disabilities as peers," says Asch, who teaches at Wellesley College in Wellesley, Mass. "Their only contact with people with disabilities is in a crisis situation, where the professional is [called on for help]. So the notion among some professionals is that people with disabilities always need help and can never give help or nurturance to another human being or provide a child with security or protection."
TLG's professional services and research projects are based on the social model of disability, which views the problems of people with disabilities as social constructs that can be dismantled. As its name, taken from the follow-up to "Alice in Wonderland" implies, TLG aims to see through the looking glass to the other side of disability, where possibility, not pathology, reigns.
TLG's groundbreaking 1985-1988 study of mothers with physical disabilities caring for their babies began the process of establishing a baseline of "good enough" parenting. Mothers developed ingenious baby-care strategies, without the help of adaptive technology, says Kirshbaum, who developed and conducted the study. One mother with paraplegia would signal her month-old baby that she was ready to lift him by tugging on his clothes. Adapting to his mother's disability, the baby would curl up like a kitten and remain still during his mother's lifts.
The study's findings also helped TLG create innovative clinical interventions for expectant and new parents. Viewing videotape of parents in the study gave Mary a "realistic idea of both the difficulties and possibilities" of parenting with a disability, says Kirshbaum. She adds that Mary gained confidence in her ability to parent and decided to keep her baby.
Providing positive role models
Giving people with disabilities the support they need to become "good enough" parents is an important TLG service. Through its five-year grant from NIDRR and the U.S. Department of Education, the organization instituted its National Parent-to-Parent Network, which connects parents or prospective parents with disabled role models who have shared similar experiences.
TLG also helped initiate the National and International Task Force on Parents with Disabilities and their Families. Washington University's David Gray--a mentor in TLG's National Parent-to-Parent Network--joined the task force because he remembers how he felt being suddenly thrust into the role of disabled parent in 1976. His children were 18 months and 7 and 9 years old.
When Gray, who lived in Minnesota at the time, broke his neck, his wife "had nowhere to turn for help, except for one couple who had stayed together after the husband had broken his neck ten years earlier," he says.
One task force project connects new parents with disabilities with veteran parents who can help them cope with the challenges they'll encounter. Gray, who says his grown children are "the most rewarding part of my life," has plenty to share about overcoming obstacles--but about the fun times too.
For instance, as a toddler, Gray's younger daughter relished riding in his lap as he wheeled from place to place, while his older kids loved to catch free rides on the back of his electric-powered wheelchair. But Minnesota's harsh winters are the backdrop of one of his fondest memories: "The kids would jump on and we would go out on the ice to see how fast we could go--and [to see] if they would fall off--as we spun around and around."
Kirshbaum, M. (2000). A disability culture perspective on early intervention with parents with physical or cognitive disabilities and their infants. Infants and Young Children, 13(2), 9-20.
Kirshbaum, M., & Olkin, R. (2002). Parents with physical systemic, or visual disabilities. Sexuality and Disability, 20(1), 65-80.
Parens, E., & Asch, A. (1999). The disability rights critique of prenatal genetic testing: Reflections and recommendations. Hastings Center (Suppl.), S1-S22.