Disability Rights

New developments

Prenatal genetic tests are now available for approximately 400 conditions, from Down syndrome to deafness to hemophilia, and pregnant women are regularly encouraged to get tested. Preimplantation genetic diagnosis can be used with in vitro fertilization to test for the presence of certain genetic conditions in embryos before they are implanted.

While knowledge of a genetic disability gleaned from a prenatal test can allow for in-utero surgery or give parents and health professionals time to prepare for the birth of a child with a disability, the most common response to a positive test is abortion or deselection. The medical community and society as a whole have generally viewed prenatal tests and preimplantation genetic diagnosis as presenting an opportunity to have “healthy” children. What constitutes “health,” however, is a contested notion: disability rights advocates argue that one can have a disability and still be healthy, that disability is just another aspect of being human, not something that requires elimination.

Stem cell and gene therapies may offer an opportunity for people with disabilities to choose to mitigate their disabilities. Many people with disabilities feel hopeful about the chance to live without pain or halt the progression of their disability, though other people with disabilities worry that the excitement over stem cell research relies on an assumption that disability is always negative.

Concerns

The disability rights community has worked to spread a social model of disability, which views the challenges with disability to be a consequence of social discrimination and barriers to full participation in society rather than as a medical problem that should be cured or mitigated.  Genetic technologies, through focusing on disability as a genetic and medical condition that can be “fixed,” may remove the focus from the social and cultural factors that play a role in how our society thinks about disability.

If disability is increasingly seen as preventable through genetic intervention and if fewer children are born with disabilities, then governments, businesses and individuals may deem it unnecessary to change society to accommodate people with disabilities.  With a decrease in population would come a decline in visibility, which could severely impact services and opportunities for people with disabilities as well as affect attitudes about people with disabilities.

More fundamentally, genetic technologies, in increasingly presenting us with options to reproductively deselect for disability, threaten to devalue the lives of people with disabilities. This is a particularly potent concern in the face of a history of reproductive oppression, both in the US and elsewhere. The eugenics movement, popular in the U.S. in the early part of the 20th century, advocated eliminating people deemed genetically unfit, including people with disabilities; a majority of states passed laws providing for the forced sterilization of people with cognitive and other disabilities.  In the context of such history, many fear that genetic technologies can be used to eliminate people with disabilities.

One way to mitigate this concern may be to give parents faced with the decision of whether or not to abort, or which embryo to implant, comprehensive and unbiased information about what it could mean to have a child with a disability. Individuals with disabilities and their family members have a unique perspective on what it means to live with or raise a child with a disability. By providing greater avenues for people with disabilities to share their views and experiences with prospective parents and society, parents will have more comprehensive information about their choices.

The disability community must have a voice in debates and decisions regarding the use of genetic technologies and their impact on people with disabilities. Too many decisions have been made regarding the lives of people with disabilities without their input; having the disability community involved will help protect us all from dangerous practices of eugenics and ensure that as a society we embrace a diverse range of human lived experiences, including living with disability.

Key questions

If adequate resources were available to assist people with disabilities and their parents; if institutions made themselves fully accessible to people with all disabilities; if people with disabilities were fully integrated into all aspects of society, how would people feel about having a disability?

How can we ensure the valuing of people with disabilities in the face of increasing options to reproductively deselect for disability?

Are prospective parents receiving the comprehensive and unbiased information they need to make the right decision for themselves based on the information they receive from genetic tests?

Join the dialogue

Invite us to brief your organization on these issues and to discuss these critical questions. We can be reached at 510-832-0852 or .(JavaScript must be enabled to view this email address).