Peter Stoner’s chronicle of his early life in an institution. Additional excerpts will be featured in future issues of the TriLine. By Peter A. Stoner
My earliest memories prior to moving to an institution, are those of a little boy with cerebral palsy in 1950’s America. The 1950’s was a decade of paranoia and suspicion of anything out of the ordinary. The Red Scare was at its peak with individuals like Senator Joe McCarthy searching for Communists under every table. Newspapers were filled with articles about how to respond to a nuclear attack, because it was believed that Joseph Stalin and the Soviet Union possessed deadly nuclear capabilities. This threat injected fear into our nation’s heart (though at the time we had no idea what a paper tiger the USSR was, and that it would not survive the century, ending in total collapse in 1991.) In those days anything or anyone different from the “norm” was relegated to an environment where the unusual could be controlled. At the tender age of four, I was to discover that this included me. Clearly, the ‘50’s was not the ideal era to be a kid with a disability, and straight off I had three: I was born Polish, I was made Catholic, and I acquired cerebral palsy.
My very first memory is lying on the carpet in my grandmother’s living room at four years of age. Since birth I had lived with my nuclear family: my mother, Marjorie, known affectionately as Fifi, my father Tony, an architect with the firm Adrian Wilson Associates of Los Angeles, and my older brother, Mark. Born in St. Joseph’s Hospital in Pasadena, California, on February 25, 1951, I bore the name Peter Anthony Fijalkowski for the first six months of my life. The Cold War probably had more than a little to do with the fact that shortly after my birth my father changed our family name to Stoner, in part because anyone with an eastern European surname was viewed with more than a little distrust at this time.
We lived a few doors down from my Aunt Addie and Uncle Leonard, and another of my mother’s sisters, Aunt Bertha, who became a nun. Her name was Sister Ann Louis, and I remember her coming home dressed in full habit, everything covered but her face. Being only four years old, I could not for the life of me figure out what happened to her ears. The place erupted in laughter when I voiced this concern. Aunt Bertha and I were always rather close, even after, as a young adult, I abandoned Catholicism and declared myself a Protestant.
At a very young age, I remember losing my front teeth in a nasty fall, and how upset my mother was over this. I also remember going into the hospital to get my tonsils out and how upset I was at having to be separated from my mother for the first time! Shortly thereafter, my parents placed me into the first of 3 institutions that would be my home for the next 17 years.
In the first of these places, at the tender age of 4, I figured out a rather unique way to move my wheelchair with my feet, without my feet ever touching the floor. I don’t know that I was any noisier than the rest of the kids, but I sure felt like I must be. At first I thought it was a game when the staff started taping my mouth. After I had lived there close to one year, my stay came to an abrupt end. My grandmother made an unannounced visit to discover me with arms and legs strapped to my bed and tape across my mouth. I’ve never had a desire to go back to that place, not even just to visit.
After that, I lived a brief time at home with my family again, but soon they would find it necessary to reinstitutionalize me. I think my mother had a hard time dealing with my disability. I vaguely remember her insistence that I keep quiet whenever we were out in public. Was my mother embarrassed by my voice? Putting people with disabilities (the “handicapped”) into institutions was much more acceptable in those days. The fact that my father had been offered a job in the Phillippines when Adrian Wilson Associates opened an office in Manila made it practically a fait accompli. It was inevitable I would re-enter an institution. If I had to assign blame for my institutionalization, I would say it was the fault of the medical community of the 1950’s. My parents were encouraged by no one to keep me home with the family. And indeed, no support system existed for them to plug into.
Now just a word about my disability, cerebral palsy: Clinically speaking, cerebral palsy is an umbrella term for many conditions surrounding injuries to the motor portion of the brain before, during, or shortly after birth. I was told I acquired a form of cerebral palsy known as Terronic Neck Reflex (TNR), and that this was one of the most classic forms of cerebral palsy. I learned all this lying naked on countless clinic tables while doctors and wanna-be doctors discussed my case as if I weren’t there. I was quite the little star in the clinic world for awhile because I was such a prime example of TNR.
Try eating while someone is yanking your feeding arm hard in the opposite direction. This is what it feels like to have CP on the very best of days. CP is not a disease. CP cannot be acquired through contact with a person who has it. Parents with CP are not fated to have children with it. CP is not the result of a spiritual or moral defect of either parents or children. Despite these facts, the popular media of the 1950’s equated CP with alcoholism or other socially undesirable conditions that needed to be eradicated. Small wonder parents of children with CP were made to feel ashamed, told to put their child away, and urged to move on with their lives.
Peter Stoner is author of numerous articles and essays on topics ranging from personal perspectives on disability to euthanasia and political action. His most significant work, My Life Inside, is a memoir of his experiences in institutional living from age 6 till age 20, when he finally achieved independence as a pioneer in the early Independent Living Movement.
With the aide of a Dynavox communication device, Peter has delivered public presentations locally, as well as testified on behalf of disability rights. Peter resides in San Luis Obispo where he writes independently by typing with his left foot.
†Deceased 28 February 2016.