Special Needs Parents

In the first half of the 20th century proponents of the Eugenics movement influenced nearly thirty state legislatures to pass a law allowing the involuntary sterilization of people with developmental, mental, sensory and physical disabilities.i This legislative trend was based on the belief that these and other "socially inadequate populations, ii would produce offspring that would be burdensome to society. The result of this policy was the forced sterilization of 60,000 American citizens, some as young as ten years old. Add to this the forced institutionalization of millions of disabled people and you see that parenting with a disability was a rare opportunity. However, by the 1970's most sterilization laws were struck down on procedural grounds and rules were adopted that prohibited sterilization by institutions receiving federal funding. Moreover, the de-institutionalization movement drastically increased the number of people with disabilities living in communities. In the 1980's the first generation of people with disabilities who were non-sterilized and living in the community came of age and began having children. Despite barriers they have increasingly become parents. 15% of families with children now contain one or more parents with a disability. The rates are even higher for some sub-groups of the population. For instance, 18.7% of African-American families, 16.3% of Hispanic families, and 24% of single-parent families contain at least one parent with a disability. In the United States alone, more than 8 million families include at least one parent with a disability. Millions more exist worldwide and the numbers are steadily increasing. Some of these parents are living their lives and successfully raising their children in spite of the fact that for far too long, people with disabilities were told that having families of their own was not an option. "Individuals with physical disabilities have been successfully parenting for years, and the majority has been doing so without adaptive baby care equipment. Although parents may accommodate to the lack of appropriate baby care equipment, most do so with increased stress, fatigue and even secondary injury. Much environmental design and everyday products exclude many disabled people from using them. Inclusive design at its simplest means designing for as many people as possible, taking into account the diversity of their abilities. Some adaptive equipment is available that reduces physical demands of care giving and it can be instrumental in preventing secondary disability complications. One source is Parents with Disabilities Online, the Internet's One-Stop Resource. They have custom-made products that are fabricated on an individual basis. One example is a Babee Tenda Crib with one side that includes a special "toddler gate that could be of use to parents in wheelchairs who are unable to reach over a standard, drop-down crib rail. Another is Pip Squeakers, baby shoes that are ideal for a parent who is blind or has low vision. The shoes have little squeakers built into them that the kiddies love, and help the parent always know where they are. In 1998, The U.S. Department of Education funded "Through the Looking Glass (TLG) , the first National Center for Parents with Disabilities and their Families to be funded by the National Institute of Disability and Rehabilitation Research. The goal is to increase information and support for more disability-appropriate resources for parents with disabilities and their children. TLG is nationally recognized for designing and fabricating baby care equipment for parents and other caregivers with disabilities. Their research shows that such equipment can have a positive impact on parent /infant interaction. By The best guide for parents with disabilities is Ricability, an independent charity in the UK that researches and publishes unbiased information on products and services to enable disabled people to live more independently. They conducted research with 51 parents with disabilities on the use of baby carriers by asking "Would a baby carrier help? A 23 page guide was created that documents different styles, types and ways to load a baby. There also are two pages of helpful organizations who offer support. It is interesting to note that another prominent resource, Disabled Parents Network (DPN), is also located in the UK. They believe that disabled people have the right to have children and that they should be properly supported to carry out that right at each stage of parenting. Their purpose is to remove the physical and social barriers limiting or denying disabled parents ability to take part in society on an equal basis with non disabled parents. All parents need assistance with parenting. For many disabled parents, standard sources of support are inaccessible or not adapted. Suitable, timely, imaginative and flexible support with parenting will generally be the best way to ensure that their children's needs and best interests are met. Inclusive design products need to involve everyone: consumer groups, designers and manufacturers alike. The term in the United States is ‘universal access' and ‘barrier free', a consumer-led campaign for a more enlightened approach.

More information:

• Michael G. Silver, Eugenics and Compulsary Sterilization Laws: Providing Redress for the Victims of a Shameful Era in United States History, 72 Geo. Wash.L.Rev. 862, 864 (2004).
• Paul A. Lombardo, Medicine, Eugenics and the Supreme Court: From Coercive Sterilization to Reproductive Freedom, 13 J.Contemporary Health & Policy 1, 3 (1996).
• http://www.abanet.org/child/parentrepresentation/PDFs/015.pdf