Parents With Physical, Systemic, or Visual Disabilities

Megan Kirshbaum, Ph.D and Rhoda Olkin, Ph.D. Through the Looking Glass, 2198 Sixth Street, Suite 100, Berkeley, CA 94710. (800) 644-2666 (voice); (800) 804-1616 (TTY); [email protected]; www.lookingglass.org Original manuscript below was published in: Sexuality and Disability, Vol. 20, No. 1, Spring 2002, (pp. 65-80 in the original). The original publication is available at www.springerlink.com There are over ten million families with children living in the home in which a parent has a disability. This includes over eight million two-parent families and two million single-parent families. 1 Approximately 11% of all American families are parented by one or two parents with disabilities according to the 1993 Survey of Income and Program Participation or SIPP. 2 Despite these numbers data on these families is still relatively sparse. Although there are legions of studies on children with disabilities, the lives of these children as they grow up are less examined, leaving a gap in the knowledge of professionals and in role models for children with disabilities. When discussing a group as large and heterogeneous as parents with disabilities it is important to keep in mind the diversity of this population. There are varying types of disabilities with tremendous differences in needs, capabilities and limitations. Disabilities can involve physical (e.g., muscular dystrophy), systemic (e.g., lupus), cognitive (e.g., traumatic brain injury), visual (e.g., blindness), hearing (e.g., deafness), developmental (e.g., autism), psychiatric (e.g., bipolar disorder), or multiple manifestations. Research on parents with disabilities often has failed to consider the important distinctions among disabilities and the differences in functional levels even within one category of disability. But the need to more specifically define disability is mandated by the profound distinctions among disabilities and to avoid overgeneralizing across differing disabilities. Thus this paper focuses on parents with physical,