A Mentor Shares Her Tips on Living with a Disability - By: Tamar Mag Raine

I have lived with cerebral palsy all 53 years of my life. It has made me very tenacious in everything I set out to do. Disability tends to make people more creative, because our bodies are different, so we need to customize many things. It's not a bad thing to have a disability, it's just what is.

I hate the word "normal" how can a word that has such a wide range, have such an impact? What IS meant by normal anyway? In high school, students have such peer pressure to be like everybody else. Who wants to be normal anyway? Who wants to look like everybody else? I like to say: Normal is a setting on a clothes washer. Those of us who have disabilities do things differently from the norm. We may also look different. Try to understand that we are people first, and accepting ourselves as we are, will help others accept us.

As an adult with cerebral palsy, there are things I do that make my life easier. For instance since I take a bunch of different medicine as well as vitamins and other supplements, I devised a way to take my pills, that solves two issues. I put peanut butter on my finger to stick a pill on, thus avoiding the slippery issue of my fingers no longer working like they used to. Then I put the pill in my mouth, and it makes it easier for me to swallow the pills without it going under my tongue, or into the cheek area. And I do that until I take all that are in my pill boxes that my assistants fill every week. I've found, through trial and error, that regular creamy peanut butter has the best consistency. Organic peanut butter is too oily and sloppy. Some brands of Hummus work, especially the dry mix that you add water to. So does frosting - but if it's too sweet it can bother your throat. One guy I know discovered mashed potatoes worked for him. Like many Irishmen, he eats potatoes at every meal. When I was a young kid my mom used to put my valium in a piece of Wonder bread and I would swallow it with a bite of bread. I had to take it with jelly at school, which I hated, because it hurt my throat.

Let your children be children. In the sixties, my mom had me in tutoring programs four days a week. There was also speech therapy that did me very little good. I hated it all! To this day, the overarching memory I have of my childhood is a blur of me and mom in the car. One summer I was planning to take piano lessons, and my Occupational Therapist told my mom it would be a waste of my time and her money. But mom simply said, "If she wants to do it, she can. My piano teacher had taught blind students to play by putting their hands over her hands and letting them feel what it was like. One fall, my occupational therapist found she had to eat her words. I came in, eager to show her that I could now move my fingers independently, due to having two months of piano lessons over the summer. That was a valuable lesson to me; I learned that so-called experts or professionals do not always know the answers! It was something I enjoyed. I took lessons in high school too. Even though we weren't very good piano players, my mother and I took lessons just because we enjoyed it. Many years later on the internet list for people with CP, we got to chatting about music and singing. So many of us had played some kind of instrument, or sang in church. My speech actually got better after I began chanting in college. My breath control got stronger, I sat straighter, and I could usually get two lines of every four lines in a stanza in the morning chant that lasted an hour. So, don't let anybody tell you or your child they can't.

As a mater of fact, my parents never let me say "I can't..." this was mostly a good thing, though at times it was exasperating trying to please my mother who sought perfection at every level from both me and my sister. I got sick of trying so hard, mostly with my speech. But in those days, there were no home computers, (my dad had one at work and it took up entire rooms!) no talking devices, no laptops. So, balance is key. You want your child to grow up to be independent, but don't harp on her at every step.

More tips later!

About the Author

Tamar Mag Raine has cerebral palsy as well as various types of degenerative joint diseases. She uses the computer to paint as well as write. Tamar sits on the Oakland Mayor's Commission on Persons with Disabilities. She has been a mentor to many people with disabilities, young and old alike. Her favorite season is Autumn, enjoying running through the leaves in her wheelchair enjoying the crunchy sounds. View her art: http://zazzle.com/Tamarmag*

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