Throughout my life, one of the
most frequently asked questions is whether I would like not to have Cerebral
Palsy. I consistently answered, “No, but I would gladly give up my speech
impairment.’ I always was quite comfortable with my disability. I enjoy being
part of the disability community. I am proud to contribute to the Disability
Movement and seeing the progress we made. I love the family and friends Denise and
I continue to treasure. My disability has never stopped me from being active in
my communities and enjoying life to its fullest. Without sounding too vain, I
must admit that it feels terrific knowing that I climbed the Wells Fargo corporate
ladder in a powered wheelchair. I would, however, liked to do all this while talking
articulately. I never wanted to be an opera singer, or a cantor, or an orator.
I often wish, however, that I did not always need to think about how I want to
say something or worry about whether people understand me, or whether I’m
speaking too slowly.
Young children
often ask wheelchair users, “why are you in that thing?” A simple answer such
as, “I can’t walk,” or, “I have a disability,” usually satisfies their curiosity.
When I tried saying that, they almost always run away screaming with fear. In
high school, I sometimes tried striking up a conversation with a female classmate.
I watched nodding her head as if she understood what I was saying when she wasn’t.
For fun, I’d proposition her and smile as she continued nodding. I wish I had a
dollar for all the time people hung up the phone as soon as they heard my
voice. Whenever I’d meet a new friend or a new work colleague who I anticipated
calling at home, I’d ask them to tell their families that if they get an obscene
call, it’s probably from me. Occasionally I take advantage of my speech impairment.
I probably passed my high school French oral final exam by mumbling. There are
at least two speeding tickets avoided that way.
There are many
ways I’ve learned to communicate. In elementary school, I had speech therapy 30
minutes daily. Exercises such as deliberately slowly breathing and removing
peanut butter from the roof of my mouth with my tongue were a waste of time.
However, it was helpful having the speech teacher engage me in activities where
I had to talk a lot. One of the speech teachers cast me as Oliver Twist in a
school play. She also debated me on numerous topics. Starting in high school, I
have always asked at least one question or added a comment on the first day of
every class. I did that to make it known that I can speak and planned to
participate actively in that class. Frequently, I ask listeners, ‘did you get that?’
I’d wait for them to repeat or paraphrase what I said. Responding just with a ‘yes,’
tells me that they at least understood the question.
When I present
to a group of people who don’t know me, I usually start by saying, ‘For the
next few minutes you are probably not going to understand what the f**k (or
hell) I’m saying. It does get easier – haha.’ Their laughter breaks the tension
enabling them to relax. In every group, there is always at least one person who
naturally understand my speech. As I speak, when I sense that too many people are
not getting what I’m saying, I glance at that person. If s/he appears to have
understood, I may ask him/her to repeat what I just said; otherwise, I rephrase
it.
Between 1975 and
1978, I frequently spoke on sex and disability panels at Sexual Attitude
Reassessment monthly workshops at UCSF Medical Center. One very memorable
moment was when a co-presenter compared listening to me talk was like attempting
to have orgasms. If you try too hard, it can be frustrating. Relaxing and enjoying
the experience can be quite pleasurable.
When I worked
at Wells Fargo, I often was at meetings where no one knew me. As I rolled into the
meeting, the tension in the room became intense. When I began speaking, people’s
anxieties increased. As we started talking about business and technical issues,
I enjoyed watching the tension dissipate. I often feel more accepted by the business community
than many disability rights advocacy groups. Too often, there is a hierarchy in
the disability community depending on the type of disability people have. People
with speech impairments are usually near the bottom. This hierarchy is not relevant
when we engage ourselves in issues other than disability.
Trying to
mingle at company parties or during breaks at conferences can be difficult.
Everyone usually stands hovering above my head. From my seating position, all I
see are rear ends. Trying to be understood is nearly impossible. After 12 years
of this at Wells Fargo, I mentioned it to one of my managers. He advised me to pre-arrange
meeting people in the hallway at breaks. Why didn’t I think of that?
The Telephone
Relay Service (TRS) is free and available 7X24 to people who are deaf or hard
of hearing or have a speech impairment. We can connect to Communication
Assistants via a TTY, or phone, or at their website. The CA calls the party you want to communicate
with, reads your messages to them, and types their responses to you. In the
early 1990s, Dr. Bob Segalman and members of the Speech Communications
Technology (SCT) group succeeded in adding a speech-to-speech component to TRS.
We can connect with CAs who go through training to readily understand us and reiterate
what we say to the party we call. As it becomes more difficult for me to speak,
I prefer texting.
There are many
Augmentative and Alternative Communication (AAC) devices that verbalize
pictures, letters, words, and phrases that are pointed to by people with speech
impairments. I don’t use any of these devices, but nowadays, when I give
presentations, I use a free text-to-speech app on my IPAD.
At the
beginning of this blog, I said that I would gladly give up my speech
impairment. Alas, at this stage in my life, I don’t see that happening, so I will go
ahead and continue having fun with it.
