3:00 “I didn’t understand myself as a disabled person because there was no identity group to belong to before about 1980.” Rosemarie explains how our current understanding of the right to opportunity and inclusion is a relatively recent development.
12:00 Disability as an identity group: diverse, porous, and socially constructed. Many people don’t choose to identify as disabled, Rosemarie says… until they run up against barriers and need to ask for accommodations.
17:45 Difference versus disability: is it a useful construct? Differences are an identity, Rosemarie says – and Identity is about “essential differences” – we may want to believe in them, but they can also be limiting. The answer? “We have the right to structure our own relationship with any of these identity groups.”
24:00 Disabilities and genetic counseling: the conflict, says Rosemarie, is one of autonomy and equality, as the right to “all the information” comes up against the threat of “eliminating certain classes of persons.”
29:00 What if there were no Down syndrome? Is this poster child for prenatal testing a necessary part of the spectrum of human variation? The irony is, says Rosemarie, that life with Down syndrome has never been better.
34:00 Where do you draw the line? If we are going to use the dichotomy of selecting against things that are bad versus selecting for things that are good, then we need a different narrative for lives affected with disability and disease – one that reflects the full potential of these lives.
41:00 “We should significantly limit the available tests.” Testing for disabilities targets certain human traits as disadvantages when we don’t really know how those will play out in their lives. A clean genetic profile does not guarantee a life “washed clean of all of the characteristics that we think are associated with suffering”
Rosemarie Garland Thompson is a professor of English and Bioethics at Emory University. She has been called a “thought leader” in disability studies. She is co-editor of About Us: Essays from the New York Times about Disability by People with Disabilities. She is here today to discuss disability rights in the light of prenatal genetic testing.