I’m searching the basement of my grandparents’ cavernous Long Island house, looking for my lost cousin in the boxes of old photo albums stored there. I am 7 years old. “Cousin,” I call, wishing I knew his name. “Cousin?” The details are vague. I know he’s a boy, that he has an extra chromosome, something called Down syndrome, and was separated from our family at birth. I’m a geneticist’s daughter. I know that chromosomes, especially that extra one, are important. I want to know where he is, who he is, but he is never more than a whisper, a ghost in the family fiction of happiness and health. Nameless except for the name I give him — Cousin XY.
Some three decades later, on a spectacularly sunny autumn day, I struggled to make sense of the sheet of paper in my hands — my 2-year-old daughter’s diagnosis — a bunch of numbers with decimal points followed by a single damning word: autism. I felt like the world had stopped. And yet it turned. I looked into her sparkling eyes, wondering how to make sense of us. I felt we had been marked, labeled, our family sorted into the “not normal” category. This all seemed unprecedented, without context. Without lineage.
But of course, it wasn’t. We did 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 in order 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 5 percent of children in the United States have a disability; among Americans 65 and older, that number leaps to about 40 percent. We need more than genetic evidence. We need narrative evidence as well.
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.
I’ve found that by sharing my daughter’s journey, my friends and family — our kin — are more inclined to share theirs. Nadia shares her experiences in her poems and stories, so that future generations can understand themselves as part of a larger tapestry. “Listening to the voices of disabled youth is like turning up the sound of a low drum, submerged and ignored, that was always there shaping the rhythm of the song,” she writes. “Sharing my writing is the means I have of fore-drumming: helping to shape the common understandings and misunderstandings about nonspeaking people.”
Not all disability lineages are recoverable. Some are lost. Erased. But the act of lineating — of researching and creating a living disability lineage — can itself be healing. I pray to my deaf grandmother and remember all our disabled grandmothers.
A sense of belonging to a greater story is integral to all humans. Disability is a central part of that story — that mix of myth and fact which makes up our family lineages. In imagining a future in which I will certainly be disabled if I am lucky enough to live so long, I have my deaf grandmother to guide me. I have Rhona, in all her taffeta sass, to help me better understand and care for my daughter. And I have Cousin XY. In my dreams, he plays with my daughter in my grandfather’s house. He has her eyes.
Jennifer Natalya Fink is a professor of English and director of the disability studies program at Georgetown University, and the author of the forthcoming book, “All Our Families: Disability Lineage and the Future of Kinship.
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