A Guest Blog: Time to Speak Part 1
My Journey Growing Up with Disability-Affected Speech*
*Please note, I’m refraining from using the terms speech impairment and impediment for neither term is an accurate descriptor and both connote negative symbolism.
I might be committing an infraction against the Disability Movement and ethos of Disability Pride by blatantly admitting that if I could change one thing about my disability, it would be my cerebral palsy-affected speech! There, I’ve said it, and I’m not going to take it back!
Cerebral palsy, CP for short, is a disabling condition caused by brain damage to an infant either in utero, during, or right after birth. It affects the brain’s voluntary motor control center, and, depending on the extent of the brain damage, it can impact neighboring areas of the brain that regulate hearing, sight, cognition, and speech. In my circumstance, the umbilical cord tangled itself around my neck and cut off the oxygen flow to my brain during my birth resulting in my having excessive muscle movements in all four of my limbs, my head, and my mouth. I spent a majority of my childhood trying to gain control over my body through physical, occupational, and speech therapies, and lots and lots of practice so that I’d be able to do as much as I could for myself. For the most part, the effort I put in paid off, although I still look a bit inebriated when I move, and sound like it when I talk! In fact, throughout my life, I’ve gotten more than of few phone calls from strangers (repair people, doctors offices, and the like) accusing me of being drunk at ten in the morning, unless they dismiss me all together asking to speak to an adult or just hanging up! Those phone calls don’t necessarily boost one’s ego if you’re already having a bad day.
I realized from a very early age that communication was an essential element for existing in the world. At the age of three, I went into the hospital for a brief period to learn how to walk with my new braces and crutches. At that time, my speech was barely understandable, except to my mother and my six-year-old sister, Shelley. Like any older sister who got displaced by a younger sibling, Shelley had only intermittent use for me, luckily just enough so that she taught me to recognize words and letters on everyday items that appeared in our kitchen: milk, soda, Kelvinator (the refrigerator brand). One afternoon at the hospital, we had a party, and I caught the aides’ attention. “What do you want?” she asked, most likely annoyed at being bothered. I pointed to the table where the goodies were set out and said, “I want s-o-d-a.” The woman’s eyes widened. She excitedly called over to my favorite nurse Miss Crush and declared that “this little one,” whose name she never bothered to learn, had just spelled soda! I had managed to figure out at the ripe old age of three that, though I couldn’t speak many words with regular clarity, the alphabet had a finite series of letters I could articulate with some consistency with giving visual cues.
I speak at the speed of an old 33 and 1/3 RPM record. I enunciate most words and modulate phases with purposeful precision, particularly when I talk to someone I don’t know well or when I’m giving a lecture. I do my best to avoid words having sounds difficult for me to pronounced—combinations like “ch” or “sh” or “ks.” I’ll interchange them with substitutes that will trip more easily of my tongue, unless it’s something specific, like a proper noun, in which case, I’ll resort to my old stand-by, spelling. I’ve developed quite a vocabulary, and I’m damn good at Scrabble!
I always communicated well with people who were part of my everyday life—family, teachers, therapists, friends—but when it came to going to interviews with intimidating authority figures like doctors, social workers, and vocational rehabilitation counselors, I usually took a back seat and let the adult who accompanied me do most of the talking until asked a direct question. It seemed as though that was the acceptable standard for the adults involved, making it easier for them, and saving time. I was rarely encouraged to speak up for myself, and, in the long-run, it left me with feelings of anxiety and a lack of confidence when I had to start dealing with the world as I grew up.
Because of how we looked and sounded, kids with CP were relegated to the bottom rung of the social pecking order among our disabled peers—the disability hierarchy. Children and teens who had disabilities like polio, muscular dystrophy, spina bifida, for the most part, appeared more average- or “normal”-looking than many of us with CP. As limited as they might have been, their movements weren’t considered grotesque-looking, and their speech was not affected by their disabilities. Compared to someone like me, people found them more appealing and comfortable to be around. There was more potential for them to fit in, be popular, and succeed. A case in point, a classmate with polio—who used a portable respirator—and I had the same rehab counselor. He encouraged her to pursue a career as a vocational guidance counselor. However, when I expressed interest in choosing to go into one of the helping professions, he quickly shot me down, admonishing me for being unrealistic, “People won’t want to come to you for help. They’ll think you have more problems than they do!” I was sixteen years old at the time.
The disability hierarchy was always accepted as the status quo; even my family agreed that the counselor probably knew best with his years of experience. But fortunately, a few months after that gut-punching incident, I ended up at Camp Jened (of the recent Netflix’s CRIP CAMP fame) where the camp administration directed the counselors to make a determined effort to dismantle the disability hierarchy by making everyone feel valued and included. If a group decision was to be made among the campers, everyone was encouraged to voice their opinions. No longer did the main speaking parts in plays only go to campers with non-affected speech; roles went to someone like me because we were right for the part! The administration and staff’s commitment to fostering an inclusive, respectful community rubbed off on the campers so that we saw value in each other. We all became better people.
Please send questions and comments to: Denise Jacobson at email@example.com
Denise Sherer Jacobson, M.A., has worked as an activist, educator, counselor, administrator,and oral historian (at UC Berkeley) in the Independent Living Movement for over 40 years. Denise was a Lindenauer Lecture speaker at the Weinberg Family CP Center in 2020. She is the author of a multi-layered memoir, The Question of David: A Disabled Mother's Journey Through Adoption, Family, and Life. Sherer Jacobson's blogs, articles, stories, and poetry have been published on websites in newspapers, magazines, and anthologies. In 2015, she was the subject of a New York Times online photo essay. She is the story consultant for the acclaimed Netflix documentary Crip Camp: A Disability Revolution, as well as a featured personality in the film. Sherer Jacobson has given presentations on disability-related issues both nationally and worldwide. Her goal as a writer/educator is “Weaving the Disability Experience into the Tapestry of Living.”