Art as Survival and Survival as Art

"Art is the recreation of reality in the form of one’s value judgments.” I believe that this statement, made by philosopher Ayn Rand, is of particular importance to those of us who are members of the disability community. Sometimes it is falsely believed that we do not possess creative capacity. Art is something we are exposed to rather than something we give to the rest of the world. It’s dropped down on us like raindrops. Too often art is dismissed as an adult pacifier, something given to us by our betters, to be played with and forgotten, but the truth is, all of us in our own way have spent a lifetime creating - creating a path to navigate this often-screwy world with joy and autonomy intact. It is through our ability to create that human beings, particularly those who have disabilities, find joy.

It is telling the story of two great and unheralded leaders of our community, both of whom have created great art in their reality and in their creations, that I wish to undertake today. Brooke Ellison and Karen Lynn Chlup are two brilliant and beautiful women with disabilities from different eras and different parts of the country. Both acquired their disabilities in childhood, Brooke from an accident, Karen from a botched injection which left her with cerebral palsy. But their difficulty lit a fire inside their hearts which made them want to become the best people they could.

Why am I bringing this story to my readers’ attention? Because, my friends, these two women, in every thought, word and deed, give their best selves, and inspire us to break down old, outmoded, limiting ideas which hold ourselves and this world back. When the temptation was to settle down into mediocrity, do nothing and desire only mindless destruction, Brooke and Karen refused. They refused to fall into the trap of being defined by those who told them to forget and fade into meaninglessness. This passion and determination, in writing and in daily reality, has made wonderful things happen. They paid a price, but moved forward on a path towards joy and bliss which seemed to promise something wonderful.

Ms. Karen Lynn Chlup is less well known so I want to explore her history. Karen was born in California in 1951. She acquired her disability when she was five months old after being given a D.P.T shot which caused a very bad reaction. She spent over a month in a coma. In the 1950’s, disability of any kind, except blindness, usually meant institutionalization.

Folks stuck in facilities in those days, received neglect at worst, and at best a mixture of isolation and pity. The experts in charge see themselves like Laertes, Hamlet’s father. “I met out law to a savage race, they that horde and feed and sleep and know not me.” The attitude of many, not all within the field, was to focus on daily living skills rather than true intellectual, spiritual and social development. This is what Karen could have been restricted to. The prognosis was grim - the doctors falsely believed she would have merely a thirty percent chance to live. Her family was told even if she lived, she would be deaf and blind, as well as unable to speak. But her inner spirit fought an almost unbearable battle and won. She retained her speech, sight and hearing, the damage consisting of a mild form of cerebral palsy, which limited her ability to use her left side. This was the first in a series of victories which Karen accomplished in her own way when everyone thought it was impossible. Having lived, the next step was to figure out how to make Karen be able to use as much of her body as possible.

Conventional methodology would not do here. Thank heaven she had a mother who was light years ahead of the rest of society. Karen’s mother, the fiery spirit known as Mama Katie, sought out a dance instructor. Al Gilbert had been a legend, a protégé of Al Jolson. It was he who had taught Annette Funicello, bringing her to the attention of Walt Disney. Al agreed to take Karen on as a dance student. It was unheard of. Handicapped people, as we were known in those days, were thought to be incapable of dance! Not true!

Karen longed to walk, jump, dance and run. Months of intense efforts paid off. After just a few months, she could hang up her iron leg brace. After a few more months, she was moving flexibly, marching around the room, doing shuffle ball changes, and kicking up her heels.

Every week was another victory, but there were battles looming on other fronts for the young woman nicknamed Kitten. Now it was time to handle her education and build up her mind like her body. Success in this area would lead to the creation of Karen’s greatest work.

Education for people with disabilities in those days was focused on what were called activities of daily living, putting on socks, and table manners replaced the science and history typical students were spending their youth working on. Karen wanted a career, an independent, self-directed existence. This would require taking on the system and developing new skills. After working as a sales girl, Karen went to Vocational Rehabilitation. Instead of help, those cigarette puffing experts falsely labeled her as having Down Syndrome on three separate occasions! This would mean working in a sheltered workshop. Karen endured this trial until she could stand no more. By this time it was the 1970s, and the Rehabilitation Act of 1973, had been passed. Karen lived out her creed, “Tell me I can’t, I will show you I can.”

A lawsuit was filed and after three years of testimony, and an ocean full of effort, victory was won. Karen was able to go to Santa Monica College and earn an honors English degree.

Now her next great victory was at hand. Karen was traveling in a park, and happened to see a carousel horse. The light went off. This horse would come to life, being revealed to be Pegasus from ancient Greek Mythology. Pegasus would take Karen, and the reader through all of the struggles and disappointments of childhood. He would pass along the lessons she had really learned from herself, Al Gilbert and Momma Katie. People with disabilities can become their best selves with the encouragement and support of those around them, but the journey like Dante’s, must be undertaken alone. Tales of the Broken Hoof is not merely Karen’s story, but the strife and ultimate victory present in all of us.

If Karen Lynn demonstrates the ability hidden and tapped by a determined spirit and a good heart, Brooke Ellison shows what can happen within the spirit of a warrior, is aroused!

Paralyzed in an accident, it would have been a temptation for Brooke to give up, to accept what the white-coated experts regard as realism. But this fiery scion of Long Island was a living example.

With her mother Jean by her side, she wrote two of the finest books it’s ever been my joy to read, Miracles Happen, and Look Both Ways. She conquered Harvard, that arcane bastion of John Adams and Henry Kissinger. It was as if the respirator she now uses breathed not mere oxygen, but divine fire. She made a choice, delivered with a smile, to wage war on a system which limits people with disabilities and to make everyone around her happier, stronger, and better in mind and spirit.

Physical and discriminatory obstacles came again and again, and she beat them. Her gentle laughter could persuade the most lost soul on earth to make their ways. She possesses a drive before which I bow in awe. Nothing, not COVID, not politicians of all stripes, can beat her. She makes you believe in the possibility of daily victory.

How many wheelchair users become international experts on stem cells, have themselves played by Lacey Chabert no less, and make Stony Brooke University a center of greatness to rival Stellenbosch? I tell this story, my friends, because there are Brookes and Karens in all of us, and in the daily refusal to give up, despite pain of body and spirit, we make victories possible as they did. They made our world possible, and so we must go forward in thanksgiving and gratitude to take up the task of showing the world our limitations need not define us.