My Speech Impairment

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 me 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. However, I often wish 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 shaking her head up and down. 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 I anticipated calling at home, I'd ask them to tell their families that it's probably from me if they get an obscene call. 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 every class's first day. I did that to make it known that I could speak and 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 will probably not 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. 

Page BreakBetween 1975 and 1978, I frequently spoke on sex and disability panels at Sexual Attitude Reassessment monthly workshops at UCSF Medical Center. One 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. There is a hierarchy in the disability community, often 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 deaf or hard of hearing or people with significant disabilities. 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 the Speech Communications Technology (SCT) group successfully added 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 pointed to by people with speech impairments. I don't use any of these devices, but nowadays, I use a free text-to-speech app on my IPAD when I give presentations. 

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.