What It Was Like Growing Up With Cerebral Palsy in the 1960s
In the midst of tremendous cultural shifts during the 1960s, I was a youngster often recovering from experimental surgeries and struggling to understand why I was “different.” On my family’s 12-inch black and white TV I witnessed people gathered together speaking out against injustices surrounding race, gender, sexual orientation and class struggles. But I didn’t see people like me displayed on the evening news.
Since the late 1800s, most people born with disabilities in Europe and the United States were “properly shunned” – housed in institutions. Such facilities were for the most part located on undeveloped parcels of land and rarely seen by local residents. They were “out of sight, out of mind.” Individuals – many placed as babies – were put away under the guise of it being “for their own good and the good of society” and regarded as second-class citizens. Many with physical disabilities acquired cognitive delays due to lack of environmental stimulation. Societal attitudes propelled a sub-standard segregated life and furthered stigmatization.
World War II had ended two decades earlier and remained in the world’s rearview mirror. Millions of Jews and “others” were murdered in the name of eugenics, an attempt to create superior humans in a twisted misinterpretation of Darwin’s “survival of the fittest.” The “others” included people living in private and state-operated institutions, identified under Nazi policies as “life unworthy of life.” Individuals with congenital, cognitive and physical disabilities (including people termed in the 20th century as “feebleminded” – people with mental illness, epilepsy, deafness, blindness, cerebral palsy and muscular dystrophy) for elimination from the chain of heredity.
My young self was ignorant of these horrid events and yet mindful of other’s perceptions. My pre-school-aged memories are filled with “Why do you talk that way?” or “How come you walk funny?” — comments I heard whenever I stepped out my front door and into the world.
A “stiff upper lip” persona took shape inside of me. My childhood naiveté vanished like smoke from an extinguished candle’s wick. Adults interrogated my mom with similar questions. They spoke over me as if I wasn’t there. Mom’s attempt to shield her baby girl against implicit discrimination often failed. She made valiant efforts to protect me from the perpetual dreaded question, “What’s wrong with you?” dipped in a thick “ooh.” It reeked with flashing red lights. There was no mistaking the underlying message. “You don’t belong.” I didn’t belong. Strangers’ stares and words cloaked me in shame.
“I have cereb’a pal’y,” I replied, delivered with a meek smile. “I know, I tal’ funny. I ‘ound ‘illy.” I followed it with my trademark snicker. If I can make them laugh, they will feel some ease — and know that I’m fully aware. It gave me a slightly opened door to enter, a chance to connect. How I longed to belong.
In addition to receiving instruction and therapies (presently known as “early intervention”), my “special school” provided a sense of belonging. I shared an incomprehensible bond with my classmates. “Different.” The politest label people beyond the school’s grounds considered us.
Kids who were not my classmates laughed when they met me. Shouts of “retarded” or “Frankenstein” often hit my ears. Their word’s power shook my already precarious balance. Frankenstein referenced my walk. I walked with my arms held up towards the sides of my chest. My hands pointed towards the ground. This stance assisted with balance as I staggered on tip-toes turned inward. Oh, how I longed to be like everyone else.
By first grade I had decided my experiences at the other end of strangers’ voyeuristic looks and labels weren’t worth sharing with Mom and Dad. The fear on their faces when expressing such encounters pierced me. Dad’s fear disguised behind familiar splashes of disgust reinforced the ridicule I felt. Mom, on the other hand, delivered a well-pat response. “Some people are ignorant, Jen. Your purpose in life is to educate them.” Her strong words clung to my brain. These words developed into my life’s mantra.
On a ride home from school one day, my bus idled at a busy intersection. A mother and her young daughter caught my eye at the corner gas station. The girl appeared to be 5 or 6 years old — close to my age. They giggled as they ran around their car. My onlooker smile turned to tears before the green light signaled the bus driver to proceed. I yearned to run carefree, to play without hearing Dad’s voice — with or without him present — saying, “Be careful, Jen. You’re going to fall.”
Our school bus rolled forward and struggled into gear. I strained my neck to retain the girl and her mother in my sight. “What are you looking at?” the boy seated behind me snickered, laughing as he noticed the tears streaming down my cheeks. “Why are you crying?”
“It’s nothin’.” I turned away in embarrassment.
“Where do I fit?” ran through my mind. That is my first memory of attempting to process “being different” as Mom said. To Mom’s credit, “different” was a palliative term. I never heard “disability” throughout childhood. The word was not a part of the societal vocabulary. “Crippled,” “impaired,” “handicapped” and “retarded” graced our country’s vernacular, on the rare occasions such discussions occurred at all.
Throughout the 1960s and into the ‘70s, our culture gave little thought, let alone consideration to persons with disabilities. Segregation of children and adults with disabilities continued. For those not living in institutions like me, buses drove us each weekday far from our homes and the neighborhood schools we wished to attend.
Up with a stuffy nose one night, I snuggled with Mom on our couch. The lights were off and the TV’s volume was set low so as not to disturb Dad’s sleep.
“Who’ t’at?” I sprang from a near sleep.
“Oh. That’s Ironside.”
“Iron’ide? What’ his name?” My interest peaked as I raised my head from Mom’s chest. “They let him be a cop?”
“He’s a detective.” She seemed unaware of my question’s motivation.
“Wow! Dete’ive. What happen’ to ‘em?”
“Happened to him?” She whispered in a thicker-than-usual Kentucky accent from nearing sleep.
“Why he’ in a wheelchai’?”
“Oh!” Mom shook awake from her respite. “Somebody shot ‘em. He can’t walk no more.” She whispered.
“He coul’ wa’k before? T’at’ ‘ad.” I was struggling to whisper so as not to wake Dad. I hoped my words had reached Mom’s ear.
“Yeah, it’s sad. But remember, Jen. TV’s not real. It’s actin’.”
“Oh, yeah. So he can wal’ in ‘eal life. ‘ight?”
“Yeah. His real name’s Raymond Burr.”
In my 5-year-old’s wonderment, I thought only kids were “different.” Raymond Burr on “Ironside” was the first adult I ever saw who was “different.” My excitement to learn more about the man on the screen — and the budding identity of “me” taking root — gave way to the night’s silence.
Getty image by Shanina.