I was born with Cerebral Palsy CP which effects my muscle coordination, including my lips and tongue. Unlike many other people with CP, the struggle to be understood at a young age resulted in no language deficits, with me it’s purely physical. This means my usage of language, comprehension of language and vocabulary is the same as someone my age – IF you can understand me.
The story has been told to me that I started trying to talk when I was 9 months old. Of course like most nine month olds I could not be understood, but my mom would always talked to me anyway. She said she could tell I was able to understand at an early age. I would say around age 4, I was developing understandable words.
My sister, Karen, who’s 20 months younger than me, could always understand my words and became my interpreter. When I was around 7 years old, my mom and grandma would remind Karen not to talk for me. They would say, “Renee has to try to be understood for herself”. I remember Karen sometimes interpreted things I did not say, and I would say loud and clear, “That’s not what I said”! There’s a joke in my family, once I learned to talk they could never shut me up! I don’t remember a period in my young life where I wasn’t understood by someone. Don’t get me wrong, there’s been plenty of people throughout my life who could not understand me, but I just don’t remember a period where I wasn’t able to communicate at least with someone.
Speech therapy was a part of my school routine since day one, and I hated it with a passion. In part, it was the speech therapist herself who was an elderly version of Judy Garland and smelled like cigarettes and alcohol! Part of therapy was to speak into a tape recorder and listen to myself afterwards. She would try to get me to talk by starting out asking; “What did you do this weekend”? Problem one; I lived in a dysfunctional family and wasn’t allowed to tell. Problem two; I hated my voice because it didn’t sound like it did in my head. So my answer was “nothing”! It would frustrate her to no end when she could get only one word out of me. It was a victory for me to get as few words on tape as possible.
In my pre-teens she started to bare my chest and put ice on it to cause me to take a deep breath. Well one would have to understand the speech room and its location in the school to understand my noncompliance. The school was “U” shaped with two floors and an elevator. It was a school for students in grades 1 – 12 with physical disabilities who’s IQ’s were above 70, and who could handle a regular academic curriculum. The speech room was on the first floor main hall. Elevators separated it from the principle and administrative office, so it was in the main thoroughfare of the building. The front of the speech room was made from those glass blocks that distorts the images when looking through it. Plus the bricks went 80% up which left a 20% gap between the wall and the ceiling that you could hear everything! The straw that broke the camel’s back, is when at age 15 she had me play a tune on the little stupid muppet-head piano and sing; “You made me love you, I didn’t wanna do it, I didn’t wanna do it, and all the time you knew…”. I had a crush on some guys, especially young student teachers, – I felt humiliated, so I just totally stopped talking for a week! My mom finally got it out of me and I never went to speech therapy again!
Experiences Speaking in public
When I was in college, a mere 21 years old, one of my communication requirements was a public speaking course where we were required to give a 3 to 5 minutes talk in front of the class. My instructor, who recognized I had a gift for writing, said she would waive the speech part and I could write it. I said no, that’s ok, I’ll do it. Well half the class walked out before I even opened my mouth. I received an A-, I was only downgraded for not looking at the audience, but who could blame me since half of them walked before I even opened my mouth!
At around age 28 I wanted to be a prayer meeting leader in my church, which entailed leading praise and worship, saying wise things and keeping it moving. Problem was I had to get my pastor’s permission. I respected him immensely, but he didn’t think people with severe disabilities could or should do very much, so I knew I was going to have to challenge him with his faith. I said, “So, are you saying God can never use someone with a speech impairment to lead a prayer group? Aren’t you putting God in a box?” He said “OK Renee you have 2 months, if it’s not working you’re outta there”! I thanked him, and said fair enough. I led prayer meetings for 2 years and was featured in the diocese newspaper. My pastor congratulated me, and said I had done a fine job in proving him wrong.
From then on I’ve spoken publically at more events and meetings then I can remember. Of course through the years there have been blatant attempts to put me where I wasn’t allowed to publically speak. I had been doing public presentations on Fair Housing, 504 Rehab Act and the ADA for over a year at a place I worked at in the early 2000’s. A co-worker got a person in the audience to call and say they could barely understand me. I was called in by the Executive Director and my director and was “redirected” in my job duties. So I requested an interpreter as a reasonable accommodation so I could continue to impart my knowledge on others. Obviously I don’t work there anymore since I speak publically often AND without the need of an interpreter.
Is Speaking difficult for me?
Although my physical appearance may make it look difficult, it’s really not – it comes pretty natural. Therefore the fear that it may be too difficult for someone with a speech impairment, using a wheelchair, or a person with an intellectual disability, should never stand in the way of requesting that individual to speak to your group or organization. Always ask allowing that individual to decide. Also, never state your fear of it being too difficult. Rather, say; “It’s going to be an audience of 500 of whoever (nurses, social workers, business people, etc.), you’ll be scheduled to talk after lunch, so we need high energy. I believe this audience needs to hear what you have to offer because …..” The person will know if they can handle the audience or not.
Remember, everyone is not perfect 100% of the time whether one has a disability or not. People with disabilities like non-disabled are going to have off days, or a day they may be more tired because they’ve had a busy or trying week, so expect us NOT to be excruciatingly perfect all the time, but do hold us in general to a professional level of competence in whatever we do.