Guest Blog by Denise Sherer Jacobson
Time To Speak
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.
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Denise Sherer Jacobson
Author, Educator, & Guardian of Memories
Weaving the Disability Experience into the Tapestry of Living
So many questions left unanswered.
Who am I?
What’s my purpose?
How could you do this to me?
These are some of the thoughts I had while going through emotional abuse but had not even the slightest clue what it was while I was going through it. Three years prior to meeting him, I was involved in a relationship where I was being physically abused and eventually suffered a shot gun blast to my right hand, suffering me to have a partial hand amputation. I knew I have been abused physically before, and struggled with now having a disability and the desire to be loved. However, I had no clue my next relationship would turn out to be abusive until after it was over.
The same man who appeared to be so loving towards me, stated he wanted a family, would be the same man who would father our child, yet toy with my emotions, even to the point of blaming me for being the reason I now had a disability. The whole time I thought our relationship issues were because of my disability, I started to see that I wasn’t the one who couldn’t be loved, my disability was never the cause for concern, nor was I lacking in any other area that any other woman did not possess.
If you are in or suspect another person of being abused never be afraid to speak out and reach out for help. Some signs of emotional abuse are but not limited to:
Breaking the abusive cycle starts with you. Know that you are not only worthy of love, but you deserve it also.
If you or someone is experiencing abuse, please call the National Domestic Violence
Hotline at 1-800-799-7233/TTY 1-800-787-3224, Deaf Dawn firstname.lastname@example.org and
Abused Deaf Womens Advocacy Services
Also you can review website listing at https://ncadv.org
By Larissa Camp
WELCOME TO OUR BLOG for Black and Brown women with physical disabilities who have a voice in reshaping how disability images of Black and Brown women with physical disabilities are defined and portrayed. If you are a Black or Brown woman living with a physical disability and want to see yourself reflected as powerful and beautiful in the world around you and want your voice to be heard, then this Blog is for you!
DWD looks forward to you joining us on our journey as we uncover topics ranging
from politics to policy, to asking hard questions like why are Black women with disabilities
underrepresented in film, TV, adverting? We also get down to the nitty-gritty taking on hot
topics such as sex, dating, living while LGBTQ and disabled, and much, much more.
We hope you join us in this new adventure of learning, growing and living Black while
Diva—an empowered woman living with a disability. Check out our Archives.
As a disabled black woman, I know how hard it is to find your voice and know how it feels to have your feelings validated. I guess at 60+ years I can find new voices that can inspire me. But I have been hard pressed for validation…until now.
The Divas With Disabilities Project or DWD is bringing together women from all walks of life, to strengthen our voices.
DWD seeks to empower Black and Brown women and girls with physical disabilities by validating our images and amplifying our voices through various mass media platforms.
Even more, DWD aims to encourage us-Black and Brown women with physical disabilities- to find our voices and live out loud, unapologetically.
This is our first launch into the blogging world. It is our sincere hope that we are able to create a space for all divas with disabilities to come and feel free to be you.
We live in a world of competing ideas. One idea can be in fashion one day, and out of fashion by nightfall. I know to be black, female and disabled that my voice is rarely heard.
Few will argue about the role mass media plays in shaping our culture. So, this is why it is troublesome for us, when we are excluded from images that represent who we are.
Sadly, our voices are muted due to backward ideas about living with a disability. Women with disabilities, in general, and Black women with physical disabilities, in particular, are rarely seen on Television or cast in movie roles.
Moreover, our voices are not only muted but we are seldom seen in positions of power. If you are a wheelchair user, or if your speech is slurred you are looked upon as a child and not as a woman who is
worthy of respect. We are not seen as smart, or beautiful. Our culture does not see us as full- bodied women with needs and desires.
Other marginalized people demand a certain amount of respect. When the women’s movement started, white women who were on the front line fighting for gender equity. Later, Black and brown women demanded that their voices be heard, and they were welcomed to the table.
Today we see women from all backgrounds on the same page in the struggle, except women with disabilities. Our voices remain muted. And, even more sobering, our voices are sometimes muted within our communities.
The good news is change is on the horizon. Our voices are emerging. Some voices may not be as loud as others; some voices may be garbled due to speech impairments. But remember garbled speech is not equal to garbled thinking.
DWD calls forth Black, Brown, disabled, female voices, who are strong and proud to wear their disability boldly and proudly and who will not be held back by messages that dictate what our lives should look like.
Our voices are unmuted and true, because we emerging voices—divas with disabilities.
By Christal Hopkins