Last week, I was contacted by a Western Illinois Unversity student in Special Education. She was inquiring about some information in regards to my disability to help her in a class project. I was happy to oblige, figuring it would lead to a better understanding of CP and disabilities in general. I have decided to include my answers to her questions here in the hopes of continuing to build such an understanding between the disabled community and the able-bodied community as well. Feel free to e-mail me if you have any further questions.
Answers to Questions about my Disability.
I am happy to answer the questions in hopes they will help others that are preparing to become special education teachers, or those with disabilities.
- What type of CP do you have? I am diagnosed with “spastic quadriparetic cerebral palsy” which means I have CP that caused me to be quadriplegic – I cannot use my hands or legs.
- How does your type affect your body and the way you live? It makes my muscles tight and difficult for me to do things by myself. As a result, I depend on personal assistants to dress me, feed me, etc. but I am blessed with a good mind. I had a very premature birth and the cause of my CP is probably some loss of oxygen to my brain, which caused a hemorrhage and damaged parts of my brain. I have met many people in my condition where their mental capacity has been affected because of the lack of oxygen at birth.
- Do you take any medication or attend any therapy to help your condition? I have a continuous small dose of the medication “baclofen” being pumped into my spine to help relax my tense muscles. The medication is provided by an intrathecal baclofen pump – a small pump implanted in my body that uses a small computer to control the rate of baclofen being pumped through a catheter that goes into my spinal cord. Every month or so I have to go to the doctor for a pump refill, and every few years I go in for surgery to replace the pump and batteries.
- How did you parents react when they found out you have CP? They told me they were scared and unsure of what my future would bring. But they trusted God. They wanted to learn all they could and get the best therapy. It was difficult but God gave them strength and hope.
- When you were in school, were there any accommodations that were made in relations to your schoolwork? In terms of my schoolwork, my IEP (individual education plan) ensured that I would have the extra time needed to complete tests, and homework. This was important because I depended on other people to write down my answers Word for Word. That is, until in about 1995 I received Dragon Dictate (one of the first voice recognition software for computers) It has now turned into Dragon NaturallySpeaking and allows the computer to write when I say. This is how I got through high school and college.
- Are a student’s learning abilities affected differently according to the type of CP they have? Yes, I don't know how I exactly. But I kind of covered it in question number two; in my case, the Lord gave me the ability to learn and a good mind enabling me to graduate from high school, attend a Community College and earn an Associate’s Degree, and then go on to Concordia University and earn a BA Degree.
- What would you like to see with the future research on CP? It would be wonderful if researchers could find ways to heal and restore damaged brain cells!
Do you have any personal goals when it comes to CP? I have the same goals as other people: to find love, get married, and have kids. - What kinds of difficulties to you face on a day-to-day basis? Everything is difficult for me, if I allow myself to look at it that way. I want to be independent, but I have to depend on other people for so much. But such is life. I think the way people react to disabilities is most frustrating. I have to work so hard to overcome the stereotypes that people have of disabled people.
- Were you ever treated differently because of CP? Any specific stories? I think that when people see me, they automatically see the wheelchair and think the worst. They are often afraid to talk to me or they think I am younger than I am because I am petite and sitting in my wheelchair. I will illustrate by a story. When I was in college, we would go to a restaurant and the hostess would give me a children’s’ menu- when I was over 20 years old! Then, the waitress would ask my father what I wanted to eat – rather than ask me. So my dad would look at me and say, “Debbie, what are you going to order?”
- What activities or hobbies do you like? I like to read and write, because, of course, that is one of the limited things I can do. My blog, “Rollin into the Future” is an important hobby – more of a mission – because it allows me to provide encouragement and information to other people with disabilities. For now, it is the daily mission that God has given to me.
- Did CP ever get in the way of these hobbies, if so how did you overcome it? I buy a lot of books – but I cannot turn the pages in the books. So my dad cuts the binding off with his band saw and feeds the pages through a scanner to convert them to computer format so I can easily read them on my computer – so I turn the pages with my voice!