Our disability lineages can only be reclaimed through the stories we uncover. This means conceiving of disability as an identity like being queer, rather than reducing it to a medical condition. L.G.B.G.T.Q.+ people such as myself, who in the closeted past had no queer family members to look to as models, can now proudly find and claim their queer lineage, reclaiming and retelling family narratives to include their queer ancestors. Despite this progress, disability remains stigmatized. Disabled forbears often remain in the shadows, viewed with shame, not pride. Without ancestry, family history or lineage. Inconceivable.
After my daughter’s diagnosis, I began reclaiming my disabled kin. I discovered I had a distant relative with Down syndrome in the U.K., who had been integrated into her family. Her name was Rhona: Hebrew for joy. I learned about her joyous, Jewish life. Her parents helped found a cutting-edge care facility, Cosgrove Care, I visited Cosgrove and learned more about Rhona. Claiming my disabled relative transformed how I thought — and felt — about my daughter’s disability.
Finding disability lineage can mean learning to listen. To hear the untold story in euphemisms, silences and gaps. To read between the family lines. It means looking at old photos and noting the variety of bodies and minds you see. It meant seeing my daughter in a picture of Rhona from 50 years ago. For her bat mitzvah, my daughter chose a blingy purple plaid dress with metallic pink accents. Only when I was looking at the bat mitzvah photos afterward did I notice how Nadia’s woven plaid echoed Rhona’s taffeta. Same pattern, same confidence.
Reclaiming our disability lineage also means rethinking fundamentally what a disability is — its meaning and value. I had never thought of my Grandma Adina as disabled. I just knew that she adored me, dance in any form, and social justice, possibly in that order. Grandma Adina was also extremely hard of hearing. Yet I never thought of her as part of my family’s rich disability lineage. Nor did I let, as Jewish tradition enjoins, her disabled memory be a blessing for my daughter. Shame and stigma about disability are so great that I had internalized them, never acknowledging that my dynamic dancing grandma was disabled.
We needn’t minimize the challenges of impairment in order to value the gifts they give us. My grandmother was frustrated by her inability to hear. She hated having to yell “What?” and we hated repeating ourselves. Nonetheless, she was the best listener I’ve ever known. But her hearing loss helped shape her extraordinary capacity for paying attention to me. In disability culture, this is called “disability gain”: the surprising benefits that an impairment can reap. This isn’t about transcending one’s disability, or being a “supercrip.” Disability justice activists like Stacey Milbern, who died in 2020, yearn for “crip ancestries”: the stories and wisdom of disabled elders. If we share our disabled family stories, we might just find such ancestors right in our own families.