A Guest Blog: Time to Speak Part 2
Bridging The Communication Divide
When the concept of consciousness-raising became popular in the 1970s, I began getting requests to speak on college campuses and at national conferences about my disability experience. I spoke on panels and gave solo presentations. I always started by addressing the elephant in the room: my speech. "For the first few minutes, you might have difficulty understanding me until you get used to my accent!" With that one opening line (or the similar ones I've used over the years), I manage to decrease my audience's anxiety and my own. Once my listeners relax, they're better able to understand my speech. And once I relax, my speech is more fluid. Moreover, I get an immediate laugh!
In truth, as a society, we aren't very good listeners. We often don't give our full attention during conversations. Our minds wander; we can get preoccupied or already try to formulate a response to what someone has said before they finish saying it. When speaking to a person with disability-affected speech, paying attention is a significant factor to a successful verbal exchange, particularly if there are distracting elements to make the conversation more challenging—street traffic, loud music, competing conversations. I touch on developing good communication skills when I give my presentations, including asking my audience to take responsibility to let me know when they don't understand me. Politeness aside, it does me no good if I'm asking for directions to the restroom from someone who just nods and smiles!
My talks are well-received, and people have approached me years, sometimes decades, later, to tell me how much they've gotten from one of my lectures. They remember me from a psychology conference, a special education seminar, or a medical school class. I'm gratified to know that I may have made a difference in how someone with a speech disability is treated. Too often, we are ignored or dismissed by others who are either afraid they're not going to understand our speech or have assumed we're not worth talking to, even by members of the Disability Community!
For in reality, even with the advent of the Americans with Disabilities Act and the surge of Disability Pride, as an individual with cerebral palsy-affected speech, I remain marginalized. When I'm in a social setting with people I don't know, having someone strike up a conversation with me is still the exception, not the norm. Even if I tried to be the initiator, people avoid making eye contact with me, or if by chance they do, I'll often read the unmistakable look of desperation in their eyes, staving me off with, "Please, not me, anyone but me!"
And sadly, I also face exclusion from members in the Disability Community, indicating that the disability hierarchy still exists in the 21st century. Some years ago, when I attended a conference put on by well-known proponents of Disability Culture, I was told that a disability awareness panel would not include anyone with cerebral palsy because it "just wasn't done." Apparently, in that part of the country, people with disabilities like CP and other developmental disabilities were still infantilized by the prevailing societal and academic culture. I was told this by a friend who I had trained in disability-related work over forty years before. I was stunned by her admission. She didn't even seem to fathom that she was complicit in enabling an extremely stereotypical and prejudicial behavior to continue. But again, that wasn't the exception to the norm.
Another instance was when I was asked to do a syndicated disability-related radio show with a colleague. Still, when the producer heard my voice, he signaled the host (who had a disability) to keep me off-the-air! Later, when I confronted the host, I shared with him that I had made previous appearances on local television and radio programs. The interviewers would paraphrase my answers if they thought I wasn't getting through to the audience.
In the age of the Americans with Disabilities Act, the perpetual inadvertent or conscious omission of excluding people with speech-affected disabilities from having a voice in disability-related forums is beyond disappointing. It's heartbreaking! Heartbreaking because the pundits, academics, and advocates who are doing disability rights and justice work are still giving a free-pass to society by sanctioning the behavior that it's okay not to listen; the homework of mustering up some patience and paying attention is just too hard and too much to expect from an audience. And now, because of COVID-19, Zoom meetings and webinars have made it less likely for people with disability-affected speech to be invited to verbally participate, unless we use augmented computer-generated speech or can text at a reasonable speed. For me, having always relied on the spontaneity of the moment to build a rapport with my audience and being a slow typist, neither option is preferable. When it comes to individuals with speech disabilities, no one size fits all. Yet, instead of insisting that, at the very least, the effort be made to bring the discussions to the table about how to make necessary accommodations for our inclusion, many webinar and event facilitators have chosen not to have us present. Even many disability advocates seem reticent to press the issue. It's simpler to avoid the awkwardness and complexity by not raising the issue at all. Thus, I'm left with the onus of second-guessing whether my voice is worthy of acknowledgment and wishing that my disability-affected speech would disappear.
Finding ways to include individuals with a disability-affected speech on a public platform is not rocket science, but it does take a deliberate commitment from leaders in the community to have our voices be heard and included. It's a commitment that will serve the Disability Movement well in our quest for true equality for all people with disabilities!
Please send questions and comments to: Denise Jacobson at email@example.com(link sends e-mail)
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. 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.” Denise was a Lindenauer Lecture speaker at the Weinberg Family CP Center in 2020.