When I was a child, I associated the month of January with three things: dark, bitterly cold mornings; snowy, icy sidewalks that terrified me because they were so treacherous for my cerebral palsied parents; and the United Cerebral Palsy (UCP) Telethon.
Hosted by Dennis James and with guest appearances by celebrities like John Ritter, Paul Anka and Liza Minnelli, the UCP Telethon was a staple of my childhood. My parents seemed unperturbed by the weirdness of watching an elaborate 20-hour extravaganza meant to elicit pity and sorrow about ……well, about them. They enjoyed the entertainment and they were intrigued by the people with Cerebral Palsy (CP) who appeared on the show.
There was, however, one telethon segment that did upset them. Several times during the broadcast, children with CP would be brought on stage in a procession, with one of the performers singing a treacly, manipulative song called, “Look at Us, We’re Walking.” The exact lyrics were:
Look at me I’m walking, look at me I’m talking, me who never walked or talked before
Look at me I’m laughing, I’m smiling and I’m laughing
Thank you from our hearts forever more
But there are so many other children who only walk with a silent prayer
For all of those who haven’t been so lucky we hope and pray that you will really care
And someday they’ll be walking, someday they’ll be talking
They who never walked and talked before
I hated this spectacle. It seemed to me that the children were being paraded around as pitiable objects, not as real human beings. I recall my father mocking the song each time he heard it — for him it was the epitome of infantilizing people who live with disabilities.
It was a classic example of “inspiration porn.” Defined as the portrayal of people with disabilities as inspirational because of their disability, inspiration porn is one of the latest manifestations of implicit bias to correctly be called out for undercutting true inclusion and respect.
Recently I posted a link on Facebook to a Forbes article entitled “How to Avoid Inspiration Porn.” I expressed my concern that some might perceive the essays I have written about my parents’ life stories as a form of inspiration porn. The post garnered a handful of likes, in contrast to the eulogies I delivered at their funerals, which were published and shared online thousands of times.
Have I unwittingly engaged in “inspiration porn” in the course of my life, I wondered? I DO use my parents’ life stories to inspire my children to overcome their own challenges. Implicit in those conversations is the understanding that my parents’ disability did present hardships, and that their determination to overcome those hardships is spiritually and emotionally motivating. Does that mean my parents’ disability was tragic? Or that I am overlooking the social injustices, prejudice and ignorance that burdened their lives far more than cerebral palsy itself ever could? I don’t think so. In celebrating my parents’ successes in marriage and parenthood, am I judging other disabled people who do not get married or have children?
That is certainly not my intent, any more than my talking about and praising my own children is an implicit statement about friends and colleagues who choose not to be parents. As the Forbes piece observes, context matters. But I can understand why it might be construed by some as creating an artificial standard for what constitutes being a “successful” person with CP.
My parents abhorred being seen only for their disabilities. My mother saw herself as a wife and mother, period. My father fought his entire life to be treated as a professional equal to his workplace peers. One of my husband’s favorite stories about my parents recalls an incident when he wanted to install grab bars along the hallway in their apartment, because their mobility and balance were deteriorating. My mother adamantly refused, protesting, “If you put those up, everyone who comes into the apartment will think that handicapped people live here!”
They were not saints or heroes. They were complex, flawed human beings who, like most people, had some very substandard parenting moments and many more wonderful ones. They were loving and wise, and selfish and stubborn. And yes, they were amazingly strong, resilient, courageous role models for me, for my family, and for anyone who truly knew them.
In combating conscious and unconscious ableism, we must take care not to negate the aspects of disabled individuals’ narratives that are truly worthy of respect and emulation. Kate Mitchell, in a HuffPost piece, queried, “Is it inspiring when someone does something amazing? Absolutely. Is it amazing to continue existing when you have a disability? No.” I don’t think the answer is that simple.
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In several weeks we will have my father’s unveiling, the Jewish graveside ceremony marking the erection of a deceased loved one’s tombstone. My year of mourning for him is nearly at a close. Engraved on the bottom of my parents’ double headstone is the phrase, “An Inspiration to All — Forever in Our Hearts.” They were. And they will be.
Guila Franklin Siegel is an attorney and Jewish communal professional. She resides in Potomac, Maryland.
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