Magazine article The Exceptional Parent

You've Gotta Have Art!

Magazine article The Exceptional Parent

You've Gotta Have Art!

Article excerpt

In the 1930s, when Ruth Elizabeth "Bette" Knapp was growing up, children with disabilities were generally kept hidden in their homes, or placed in institutions. Leisurely trips to busy places were rarely considered. Those who needed to use wheelchairs often had to make do with heavy, oversized, and awkward contraptions. So, what were the parents of a very intelligent and active child like Bette, who contracted juvenile rheumatoid arthritis, to do?

Bette's parents, Ruth and Stuart, always had a solution. They never denied their daughter any of the pleasures of childhood. They did not keep her sheltered behind closed doors at home--or anywhere else. Instead, their West Hartford, Connecticut, home welcomed masses of neighborhood children. Her parents also included Bette in an active social life.

From the theater to the races--even the 1939 World's Fair and long-distance travel by car--she accompanied them everywhere in the lightweight wheelchair her mother adapted for her. It consisted simply of a wooden auditorium chair with a foldable seat, and tricycle wheels added on the legs. "I remember getting to meet Abbott and Costello as well as Tommy Dorsey," Bette recalls. "I was easily able to get their autographs because they spotted me in my unique wheelchair and came over. My mother gladly accommodated my wishes to go backstage; the end result was that those experiences greatly enhanced my self-esteem."

The foundation Bette's mother laid for her is reflected still, decades later, in Bette's work with people who have disabilities. For almost 15 years, Bette has served as coordinator of Programs and Services for People with Disabilities at New York City's Lincoln Center for the Performing Arts. Every year during theater season, Bette's generous efforts have benefitted people with disabilities of all ages by allowing them to discover and explore the joys of the arts.

Her efforts have transformed the venerable Lincoln Center into an increasingly accessible institution. She initiated the decade-old program "Passport to the World of the Performing Arts," which invites students aged 6 to 13 with physical, emotional, mental, visual, or hearing disabilities, to attend concerts and educational workshops at the Center.

The "Passport" program is an interactive experience that encourages social development and creativity. Children meet other children, receive direct education from the artists themselves, and even get to touch and play with musical instruments. The young ones get caught up in the energy of a live performance, something Bette's parents made sure she would never be left wanting. So far, hundreds of children have become beneficiaries of Bette's tireless efforts, and heirs to her parents' early advocacy for their own child with disabilities.

Reach out and touch

According to her mother, Bette was an early-talker and walker before the onset of juvenile rheumatoid arthritis at age 3. Her mother told her the story of how, at just over 2 years of age, Bette had been able to climb their living-room wing chair and reach out for a jar of chocolates perched high atop a cabinet. By the time she was 4, however, the pain from her illness spread throughout her entire body. Over the next two years, she was no longer able to walk. Contrary to the therapy that was recommended at the time, Bette's mother strove to keep her moving. "She gave me only limited bed rest," recalls Bette.

The condition also did not stop her parents from taking Bette with them wherever they went. Her mother knew exactly how to handle her daughter's pain in dealing with insensitive stares in public places. A pivotal moment Bette remembers was when she was 7 and eating at a crowded restaurant with Ruth and Stuart: "My mother was eating with one hand and feeding me with the other. At one point, I let my mother know how uncomfortable I felt being stared at by a woman sitting across from us." To make a point, Bette's mother stared right back at the woman while pretending to whisper something into her daughter's ear. …

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