As Evelyn Neuhaus sits in a coffee shop talking about her latest film project, her wheelchair is hardly visible behind the table–and she seems to prefer it that way. “It changes the way a person is perceived in the world, and I’ll never get used to that,” she says. “I want people to stop making assumptions about me.”
Neuhaus used a wheelchair throughout her thirty-plus years working as a hospital and health care administrator at U-M and St. Joe’s. Now, at age sixty-two, she is doing something even she assumed wasn’t possible–working as a filmmaker. “I always had a fantasy about it but never thought that physically I could do it,” she says.
Neuhaus has a genetic disease called Gaucher’s (go-shayz), most common in Jewish people of eastern and central European descent. An enzyme deficiency causes fatty tissue to accumulate in cells–in Neuhaus’s case, her bone marrow and bones. In her late twenties, after repeatedly breaking several major bones, she decided it was easier and safer to navigate life on wheels. She receives an intravenous enzyme replacement therapy that became available in 1991. It can’t reverse the bone damage, but slows the disease’s progression.
Her mother died of Gaucher’s when Neuhaus was seven, but her parents never told their only child that she, too, had the disease. She found out during a routine physical in college. “Looking back, I think my father didn’t tell me out of love for me,” she says. But she thinks her anger about not being told may have “unconsciously” contributed, during her twenties, to those broken bones. “I just wasn’t taking care of myself,” she says. “I was being self-destructive.”
Growing up in a family “shrouded in secrecy,” she believes, may also explain her turn to documentary filmmaking. For several years, she volunteered at Community Television Network, where she learned interviewing and production techniques. After taking early retirement from U-M six years ago, she enrolled in filmmaking classes at Washtenaw Community College, where she found herself, she says, “mostly working with eighteen-year-old boys who like to make films about cars, guns, and vampires.” The film she began to make as a student was of a different nature: an hour-long documentary on retired U-M professor Irene Butter, who as a young girl survived the horrors of the Bergen-Belsen concentration camp.
Neuhaus had met Butter about forty years ago, when Butter was a U-M professor of public health and Neuhaus was a graduate student. And they share a deeper connection: Neuhaus’s Jewish parents fled Nazi Germany. Neuhaus began filming Butter’s talks to schoolchildren about her German family’s exile in the Netherlands and later imprisonment in Belsen. By the time the camp was liberated, Butter, fourteen, weighed just seventy-nine pounds.
The unfinished film, Never a Bystander, has taken on a life of its own. “It’s become a film about how someone chose to be a survivor instead of a victim,” explains Neuhaus. “It’s about how she chose to live her life in an openhearted way.” Butter is active in human rights work and co-founder of Zeitouna, an Arab-Jewish dialogue group. She also helped create U-M’sRaoul Wallenberg Medal and Lecture, which honors contemporary heroes working in the spirit of the Swede who saved thousands of Jews during the Holocaust. Filmmaker Laurie White, who made Refusing to be Enemies, a documentary about Zeitouna, encouraged Neuhaus–an assistant producer on that film–to tell Butter’s story.
Neuhaus explains that because her personality is so different from Butter’s, “I’m constantly working at the edge of my comfort zone.” A self-described “introvert,” she knows the film will succeed only if she reaches out to the community. “The process of making this film is an opportunity for me to model myself after Irene,” she says. She has hired out most of the camerawork but has handled the directing, producing, and some of the editing. She’s raised about $8,000 for the project through friends and the Jewish community, but is still seeking financial support to complete and market the film.
Neuhaus’s father was forced to drop out of dental school in Germany during the Nazi regime and later escaped to the United States via Africa. He was immediately drafted into the U.S. Army and sent back to Europe during WWII–“the last place he wanted to be”–where he served as a translator in a POW camp.
Her mother’s family escaped Nazi Germany for Paris, then fled again, to Portugal, after the invasion of France. They, too, eventually reached the U.S., and her parents met and married in New York City after the war. Her father sold picture frames, her mother was a manicurist, and, Neuhaus says, they gave her a “solid middle-class” upbringing.
After Neuhaus’s mother’s early death, her maternal grandmother lived with them until her father remarried when she was nine. (She has a stepmother and half-sister who live in San Diego.) She graduated from the prestigious Bronx High School of Science at age sixteen, went on to major in genetics at Cornell, and followed a Cornell friend to U-M to study public health. She’s lived in Ann Arbor since 1970, and earned both an MPH and MBA from U-M.
Except for a few years in the 1980s when she was married, Neuhaus has always lived on her own. She uses a non-motorized wheelchair and drives her own car. Although she lives with fatigue and shoulder pain that “changes by the day,” she emphasizes she does “not have paralysis.” She tries to meditate daily, swims about four times a week–a “lifeline” that keeps her body moving–sings in the Temple Beth Emeth choir, and is a member of Ann Arbor Reconstructionist Havurah. A housekeeper helps her weekly with cleaning, yard work, and shopping.
Neuhaus’s father also had lost his mother at a young age–just before his Bar Mitzvah–to breast cancer. “He was a broken man,” she says. “He did the best he could for his family.” She told her father’s story in a short film. Now she’s focused on completing Butter’s story.
“So many films are made and sit on the shelf,” says Butter. “My wish is that somehow it will be marketed–that she finds a way to get it out into the world.” Neuhaus plans to offer it to school systems with a study guide, submit it to Jewish film festivals, and ultimately find a distributor for it. And when she does complete the film, Laurie White has already suggested a new project to her: a documentary on the life of Evelyn Neuhaus.