Life Before Disability Justice
Debbie Chein recounts the story of her disabled twin sister and how her family’s decision to not institutionalize her both enriched and complicated their lives.
When identical twins Debbie and Judy Chein were born in 1952, it was clear to the family that Judy had physical limitations. Later, when Judy was diagnosed with cerebral palsy, the full extent of her disabilities became evident.
“At that time,” Debbie Chein Morris writes in her upcoming memoir, We Used To Dance, “infants were placed on their stomachs and it was from there that we learned how to roll over. Judy began lifting herself up with her hands before I did, and it was seen as a good sign. However, as it turned out, it was due to her muscle rigidity and did not indicate an ability to control her body.”
We Used to Dance is a testament to love, sibling connection and human agency.
Indeed, Judy was not only unable to roll over, but she never developed the ability to speak, walk, feed or dress herself. This, however, did not stop the sisters from playing or from finding their own ways to communicate. In fact, as the book title indicates, as very young children, they danced together, twirling around their apartment until Judy’s weight became too much for her twin to support.
They always found ways to have fun, Debbie recounts.
What’s more, Debbie writes that she always accepted her sister’s condition — it was what it was. Nonetheless, this did not stop her from wishing that Judy, like many of the children in the annual Jerry Lewis Telethon, would one day be able to walk on her own. Her fantasy involved trips to the candy store in their Bronx neighborhood, a place where local kids were able to buy sweets and where she pictured Judy carefully selecting the treats they’d share.
But it was not to be.
We Used to Dance is a beautiful chronicle of a time before disability justice movements existed — before the Americans with Disabilities Act made discrimination illegal and before the Individuals with Disabilities Education Act made “a free appropriate education at public expense” the right of all children and youth.
Instead, throughout the 1950s and 60s, parents like the Cheins were advised to institutionalize their offspring, something that they refused to do, and the book pays loving homage to their decision to care for Judy at home. Moreover, it documents their determination to give Judy a stimulating life, taking her on trips to local parks as well as to a bungalow colony in the Catskills and to Israel. Everyone pitched in, although Morris concedes that caregiving fell most heavily on her, her mom and her grandmother.
Eventually, though, the family was able to hire home attendants who assisted with Judy’s everyday care. This continued for decades, until Judy’s health began to deteriorate and it became obvious that she needed more attention than she could receive at home. By this point, Judy and Debbie were in their fifties, and their widowed mother was 91.
But where to go? Placement in a nursing home, albeit necessary, was fraught, and Morris describes her angst in heartbreaking detail. Thanks to the memoir’s structure, snippets of her journal are integrated with narrative passages. The combination gives readers a glimpse into her deeply-felt concerns and questions. First, she worried about the care that Judy was receiving, especially when she realized that things she’d been promised by facility administrators were not being provided. Secondly, Judy’s placement forced a reckoning with their older brothers, neither of whom played much of a role in Judy’s care.
“I lived the closest,” Morris rationalized. “I’m the daughter. That’s the way it happens. I understood it, but I resented it…I kept my frustration to myself. I was aware that emotional stress can have a negative effect on relationships, leading to quarrels and hurt feelings.”
Still, the sexism rankled, especially since Morris was juggling a full-time teaching job, a long-term marriage, and the parenting of three sons, all of whom were in different developmental stages. Morris’s description of her exhaustion, coupled with frustration, fear, remorse and self-reproach, is gripping.
It’s an emotional read, and when Judy dies two years after being placed in the nursing home, relief and sadness came to the fore. In addition, the death of Morris’ husband David nine years after Judy adds a poignant additional element to the story.
As an elegy to both Judy and David, We Used to Dance offers a tender and instructive look at life’s inevitable end. But it also provides a look into the deficits in medical training. “The doctors had never had a patient like Judy,” Morris writes, “and they were scrambling in the dark.”
That Judy deserved better is obvious, and while I wished We Used to Dance was more prescriptive, it is nonetheless inspiring — a testament to love, sibling connection and human agency.
We Used to Dance: Loving Judy, My Disabled Twin
by Debbie Chein Morris
She Writes Press; 168 pages
Oct. 24, 2023