By Jennifer Natalya Fink writing for NYTimes
Professor of English & Director of Disability Studies Program Georgetown University
We have a lineage of disability in our family. Given that roughly one in four adults have a disability of some kind, all our families include disabled ancestors. Disability is part of every family story. But we have to know of our disabled kin to claim them. We now can learn about our racial and ethnic heritage simply by spitting into a vial: millions of people have done so to take ownership of their identities.
When it comes to disability, though, the tools of genetic testing are often used to eradicate and pathologize, not to map and connect. And they are inadequate to the task because the vast majority of disabilities are acquired over time: About five per cent of children in the US have a disability; among Americans 65 and older, that number leaps to about 40 per cent. We need more than genetic evidence. We need narrative evidence as well.
Our disability lineages can only be reclaimed through the stories we uncover. Despite the progress, disability remains stigmatized. Disabled forbears often remain in the shadows, viewed with shame, not pride. Without ancestry, family history or lineage. Finding a disability lineage can mean learning to listen. To hear the untold story in euphemisms, silences and gaps. Reclaiming our disability lineage also means rethinking fundamentally what a disability is — its meaning and value. We needn’t minimize the challenges of impairment to value the gifts they give us. Not all disability lineages are recoverable. Some are lost. A sense of belonging to a greater story is integral to all humans. Disability is a central part of that story.