She’s paralyzed from polio. Now she’s warning Orthodox Jews of an impending danger
A well-known author, public speaker and podcast host is adding her voice to the ongoing effort to encourage vaccination against polio among residents of a heavily Orthodox county where a man was paralyzed by the virus earlier this year.
Chava Willig Levy, who is paralyzed and reliant on a motorized wheelchair from a childhood bout of polio, is featured in a new video by the Jewish Orthodox Women’s Medical Association.
In the video, she describes how in the mid-1950s, when she was just 3 years old, her mother called her to the Shabbat dinner table but found her complaining of an “unbearable headache” that proved to be the first symptom of polio.
“Within three days I was hanging precariously between life and death,” Willig Levy said in the video.
Polio was a widespread public health emergency in the 1950s, when it caused upwards of 15,000 cases of paralysis per year in the United States. The approval of a vaccine in 1955, developed by Jonas Salk, is widely credited with helping to eradicate the disease. But the vaccine was not yet widely available when Willig Levy contracted two different strains of the virus, leaving her limbs and breathing muscles paralyzed and her spine severely curved.
While Willig Levy survived, she recounted in the video the story of a young Orthodox girl she met during one of her hospital stays who wasn’t so fortunate.
Public health officials have pointed to low vaccine rates, particularly among children, as a reason for polio’s small but significant resurgence. A Rockland County man, who was identified as an Orthodox Jew who had not been vaccinated against the disease, was diagnosed with paralytic polio in July, the first such case in New York since 1990. Rockland County has the largest per capita population of Jews in the U.S., with 90,000 people who identify as Jewish making up 31% of the population.
Hearing about the case made Willig Levy feel “powerless” so when JOWMA approached her, she was eager to help with the vaccination campaign.
Willig Levy released her memoir A Life Not with Standing in 2013 to wide acclaim. In the book, she details how polio affected her life, including a period when she required an iron lung to breathe. Alisa Minkin, a pediatrician and host of JOWMA’s podcast, said that inviting her to participate in the vaccination campaign was a natural fit.
“It’s name recognition, but it’s also the dynamism,” she said. “She really made every effort to make it that it will be accessible and relatable to every Jew.”
While Willig Levy has spoken publicly about her life’s challenges — such as lengthy hospital stays, painful surgeries and the stigma and social isolation that followed her illness — she has used those experiences to highlight Jewish lessons such as gam zu l’tovah (this too is for the good). She made a conscious decision to make her disability the focal point of the video.
“I consider my disability a piece of who I am but by no means the most important piece,” she said. “As a public speaker, I may pepper a lecture with autobiographical anecdotes, but the lecture is never about my disability. This time, I put my disability front and center. This time, lives are at stake.”
Key to her approach, she said, is not being judgmental of those who have chosen not to vaccinate their children, but to speak in a way that would resonate with them. Willig Levy chose to promote her familial bonafides (her great-grandfather was a famous rabbi) and frequently slipping in Yiddish phrases. Although she does not identify as Hasidic, she wanted viewers to know she’s “very proud of my Hasidic roots.”
“I wanted them to understand everything I said was genuine, that I have gratitude to Hashem,” she said using the word for God. “I wanted them to understand I might not be a Hasid, but that I share their belief that God cares about us and wants us to be well.”
No other active cases of polio have been identified since July, but the virus has been detected in more than 80 wastewater samples, leading public health officials to warn that it could only be a matter of time before someone else is paralyzed.
In an email, a spokesperson for New York health department said that while over 56,000 doses of polio vaccine were administered to people ages 18 and younger in Rockland, Orange, Sullivan, and Nassau counties between July 21 and Dec. 22, almost 22,000 people in that age range have not yet been vaccinated.
Willig Levy’s video is just one part of the campaign to improve the vaccination rate among New York’s Orthodox population, JOWMA has also partnered with the local health department to pass out English and Yiddish language informational pamphlets on vaccines and polio, as well as setting up the informational hotline, 929-4-GEZUNT.
While Minkin said it’s difficult to say if they’re reaching people who hold ardently anti-vaccine opinions within the community, there has been anecdotal evidence that the campaign has been successful. She recalled one mother from Belgium who read an interview with Willig Levy and contacted JOWMA for information on vaccinating her child.
Willig Levy said she’s received calls and text messages thanking her for the video, for which she feels gratitude. But, she acknowledged, it’s hard to say if her words have changed any minds.
“Obviously, the people that are reaching out to me, it maybe is a little bit like preaching to the choir,” she said. “I don’t honestly know if the video has reached, yet, the population that is hesitant about the polio vaccine.”
“The goal is to not have one more, chas v’shalom, be paralyzed,” she said, using the Yiddish phrase meaning God forbid. “And polio is completely preventable.”