My Sister, My Companion: A Conversation with Debbie Chein Morris

eleanorbader

Nov 3

When identical twins Debbie and Judy Chein were kids, they'd dance around their Bronx apartment, swirling, dipping, and twirling. But as the pair grew older, this activity became impossible because Judy, born with cerebral palsy, needed more physical support than her sister could give her.

We Used To Dance: Loving Judy, My Disabled Twin, is Debbie's deeply felt memoir about Judy's life and death. The book touches on sibling loyalty, family obligations, gender, severe disability, and the many ways that medical professionals fail the disabled community. It also focuses on the eventual need to institutionalize Judy, a decision that filled Debbie with angst, and led to feelings of guilt and remorse. By weaving journal entries from Judy's time in a nursing home with a more descriptive narrative written in hindsight, the book offers a sense of immediacy alongside a complex analysis of the many factors that prompted the decision to put Judy in custodial care. It's both moving and insightful.

Overall, the memoir gives readers a window into what it means to love someone with a complex disability. At the same time, it provides a glimpse into how attitudes about disability have changed over the past half century – and reminds readers of how much still needs to change.

I spoke with Debbie Chein Morris by phone several months before the book's release about her relationship with her sister and the many years it took to write We Used to Dance.

Eleanor J. Bader

Judy was born with the umbilical cord wrapped around her neck, which deprived her of oxygen. Did your parents feel that there was medical negligence?

Debbie Chein Morris

No, they didn't. According to family lore, I was supposed to be born first, but Judy dropped down ahead of me. It was 1952. At that time, hospitals did not have the medical equipment that we have now, so my parents accepted that her cerebral palsy was just one of those things that sometimes happen. The extent of her brain damage was not immediately known, but Judy was never able to speak, walk, dress, or feed herself.

Eleanor J. Bader

When did you realize that Judy would not be able to play like other kids? How did this impact you?

Debbie Chein Morris

When I was about seven, I remember talking to my father and telling him that I wished I could trade places with Judy. I realized that she was not the same as me. I don't remember feeling angry that she was different or even feeling any guilt. But as a child, I was frustrated that I could not fix her.

Eleanor J. Bader

You write that "Judy was my companion." Did you have other friends as a child?

Debbie Chein Morris

We lived in the Bronx and I had friends from our apartment building and from school. My family went to a summer bungalow colony in the Catskills and I had friends there as well. The other kids treated Judy the same way I treated her. She could not participate in our games, but she was happy watching us play. I never felt out of place or in the spotlight because of Judy. It was only when we went on a trip or to a restaurant that people stared at us. Sometimes a child would ask us what was wrong with Judy, but I never felt shunned and people did not avoid us or act afraid of her – only curious. Still, Judy did not have any friends of her own. She attended a program run by the Federation of Jewish Philanthropies. There were no academics, but there was music and craftmaking. Remember, this was before Public Law 94-142 (The Education for All Handicapped Children Act) was passed. When we were kids, there were no educational programs for kids with special needs and by the time laws were enacted to help the disabled, Judy was too old to benefit from them. Had she been born later, her situation might have been different.

Eleanor J. Bader

In the 1950s and 1960s, parents were typically advised to institutionalize children with physical or intellectual disabilities. Why do you think your parents refused to do this?

Debbie Chein Morris

The decision is a testament to the kind of people my parents were. They had this child and they saw no reason not to keep her at home. She was medically healthy as a child and my parents accepted that this was the hand they'd been given. My grandmother helped care for both me and Judy. My mom would have had a much harder time without this help.

Eleanor J. Bader

You write that Judy did go to summer camp, though. Were there other places of respite for Judy and other family members?

Debbie Chein Morris

A friend of the family told us about a sleepaway camp for disabled children and young adults. Judy attended for two years until the staff told us that she was too disabled to return. Apparently, most of the other campers were able to participate somewhat in their own care. Judy's required level of care was simply too much for them to handle.

Eleanor J. Bader

I've heard a lot of stories about wheelchairs being damaged or destroyed by airlines. Your family flew with Judy. Were there ever problems like this?

Debbie Chein Morris

This is a 21^st-century problem because of the number of wheelchair-reliant people traveling. When Judy traveled, hers was generally the only wheelchair on the plane. The airlines always boarded us first and we got off last. We'd have to lift and carry Judy between wheelchair and seat, but the flight attendants were always helpful and her chair was always intact.

Eleanor J. Bader

Did your family get any help paying for Judy's wheelchair or other equipment or did your family pay for everything out of pocket?

Debbie Chein Morris

When Judy turned 21, she became eligible for Medicaid. Medicaid paid for a new wheelchair when needed and, when my mom realized that she needed more help, Medicaid paid for a home attendant. Eventually, they paid for the nursing home. I don't believe my parents received financial help before Medicaid kicked in. Judy's physical health began to deteriorate when she was in her 40s due to the curvature of her spine, and she began periodically wheezing. In her concern, the home attendant would call 911 and Judy would be taken to the hospital. Judy would open her mouth to say yes and grimace to say no but the fact that she didn't speak meant that doctors were limited in understanding her symptoms. It was clear that the medical training they'd received did not prepare them to deal with someone like Judy.

Eleanor J. Bader

You have two older brothers, but they were not as involved in Judy's care as you. What was this about?

Debbie Chein Morris

Perhaps it's sexism in that more was expected of the daughter. I also lived geographically closer than either brother. For the first nine years of my marriage, I lived in the same apartment building as my parents and Judy. When I moved, I stayed close. This was especially important to me after my dad died because my mom did not drive. My husband, three kids, and I visited often and took Judy to parks and gardens. When Judy went into the nursing home, it was basically accepted that I was the one to make decisions about her, as my mom was 91 at that point. My brothers were willing to offer input, but they were happy to have me take the lead. Still, when I was told by Judy's doctor that we needed to place Judy in a nursing facility, I felt tremendous guilt. I was hard on myself for not doing more and for having made my own family my priority because this reduced the attention I gave to Judy.

Eleanor J. Bader

Judy died in 2007 and We Used to Dance is coming out in 2023. Tell me why you decided to write this memoir. What was your process like?

Debbie Chein Morris

A year after Judy died, I tried to write about the experience. I knew I wanted to write a book about her, but when I opened the journal I'd kept about her time in the nursing home, it was incredibly emotional; I simply couldn't do it. I repeatedly tried to read the journal, but this continued to be difficult, so I decided to do something different and began jotting down anecdotes and making lists of things we'd done and people we'd known. I added to this list periodically over the years. Ironically, it was my husband David's death that helped me get going. I needed to do something meaningful for myself after he died, and despite feeling lost, I needed a project. I'd retired from teaching when David got sick and I'd devoted myself to his care. Now I needed something new. Therapy was helpful. After David died, I needed help processing my grief and, of course, all kinds of things from my past came up. It was through therapy that I was able to accept Judy's death and shed the guilt I'd been carrying.

Eleanor J. Bader

How did you get from manuscript to publication?

Debbie Chein Morris

I was reading a memoir published by She Writes Press. I investigated the press and learned that for my book to be considered for publication, I'd need to send them a writing sample. I decided to go for it and sent something off. They accepted it, but told me that the manuscript needed revision. They provided me with a coach and suggested the format for the book: a mix of narrative and journal entries. I'm very grateful to my coach and excited to be getting this story out into the world.