Report on International Conference on Parents with Disabilities & their Families
By Corbett O'Toole (Corbett@disabledwomen.net)
The Second International Conference on Parents with Disabilities and Their Families was packed full of information and challenges from the opening keynotes to the closing sessions. Crammed into three days were workshops and presentations on many aspects of parenting with a disability.
Held in Oakland, California by Through the Looking Glass, this historic conference brought together people from five continents and many disciplines. Diversity was a big theme at the conference - from diversity of disability to diversity of language to diversity of perspectives.
Right from the first page of the program, the theme was set: "While our focus is working with and service families with disabilities we do not assume dysfunction or tragedy due to disability. These are our families, too, and we know the strength, resilience, wisdom, nurturance and humor that are part of the disability experience. At TLG our mission has been to demonstrate and encourage resources and model early intervention services which are non-pathological and empowering."
Keynotes expanded traditional scope of parenthood
The opening keynote took up the challenge of this powerful message. It was surprising both in its diverse focus as well as its strong messages. There were many moving and insightful moments.
Dr. Tanis Doe, a Fulbright scholar and researcher from Canada, spoke movingly about the challenges faced by parents with psychiatric disabilities. She discussed both the constant constraints on successful parenting from well-meaning but often poorly informed professionals. She identified key issues of concern, such as a widespread policy of removal of children, as well as some solutions. She urged listeners to vigilantly keep the umbrella of the disability social model spread wide to include people with psychiatric histories.
Dr. Megan Kirshbaum, co-director of TLG, took both a personal and professional look at parents with intellectual disabilities. She spoke of the difficulties facing parents with intellectual disabilities - both from society and the professionals who assist them. She provided concrete examples of the supports necessary to enable parents with intellectual disabilities to be effective parents. She also spoke about how her life, and their children's lives, were impacted as her husband's multiple sclerosis impacted his intellectual abilities.
In addition to these two forceful presentations, Dr. Paul Preston, co-director of TLG and author of Mother Father Deaf, discussed the intricacies of being a deaf parent. Deborah Kent Stein, National Federation of the Blind, related the experiences of parents with visual disabilities. Dr. Rhoda Olkin, professor, focused on issues faced by parents with physical disabilities.
Concurrent sessions and workshops
After this groundbreaking opening, concurrent sessions began. On the first day, Thursday, there were a series of workshops on Parents with Developmental Disabilities (United States language for parents with intellectual disabilities). The first session focused on interventions for parents with young children while the second session examined successful adaptive strategies.
On a separate track were workshops examining the various diverse cultures of parents with disabilities. These workshops cast a spotlight on how different cultures interpret and support parents with disabilities. Of particular note is how cultures that keep adults close to the family networks are more successful at supporting the parenting efforts of disabled parents.
Thursday afternoon ended with a sharing of resources between TLG, the National Federation of the Blind (U.S.) and Disability, Pregnancy and Parenthood international (DPPi) of the United Kingdom.
Friday began with an examination of a longitudinal study by Gwynnyth Llewellyn, Ph.D., on mothers with intellectual disabilities. Dr. Llewellyn found that having extensive, informal support networks greatly enhanced a mother's ability to successfully raise her children. While having family, particularly a parent, to assist was the optimal, having a parent-figure and committed, but not blood-related, support was also very effective. Least effective was relying solely on government aid programs because the programs and/or staff changed frequently.
A frequent problem for parents with disabilities is the attempts to challenge the custody of their children. Dr. Lewellyn and others postulate that 40-60% or parents with intellectual disabilities, 30-50% of parents with psychiatric disabilities, and nearly 30% of all parents with other disabilities have their custody challenged at some time. Two workshops examined these issues from various strategies: NGO direct legal aid services, government-mandated legal assistance programs, and legislative policies.
Parents with physical disabilities also have issues in successful parenting. Before they have children, they are often trying to get hard-to-find information about pregnancy, birth and adoption. Workshops on each of these issues blended resources from parents with personal perspectives on going through them. After children arrive, how to physically manage them becomes the focus. Through the Looking Glass is a world-leader in designing and creating adaptive baby-care equipment. Whether it is a walker that can carry a baby or a crib that can be easily opened by a parent with limited hand use, TLG has thought of it. Two workshops for professionals and parents documented TLG's extensive work on adaptive baby-care equipment.
Overall the conference was a resounding success. With nearly 200 participants from Uzbekistan, Philippines, Japan, United Kingdom, Australia, Canada as well as the United States the conversations in the workshops, halls and bars were lively and informative. TLG held a similar conference in 1997, let's hope they do it again!
History of the Center
Through the Looking Glass was founded by Megan and Hal Kirshbaum in 1982 to address the important but usually overlooked concerns of parents with disabilities and their families. It emerged from the historic Berkeley disability independent living movement and remains strongly tied to a social model of disability. It has pioneered clinical and supportive services, professional training and research serving families in which a parents, grandparent or child has a disability or health condition. Its staff includes psychologists, researchers, occupational therapists, developmental specialists, social workers, family counselors, childbirth educators, rehabilitation counselors, and legal specialists. More than 80% of the staff have disabilities or are parents or family members of people with disabilities. It currently houses the National Resource Center for Parents with Disabilities. For more information about their work go to their website: www.lookingglass.org
Sessions on parents with visual disabilities, international perspectives on parenting, parents with psychiatric disabilities, and deaf parents will be covered in depth in future issues of Disability World.