My van is still in the shop, waiting to have the lift fixed. I decided to step away from my normal topic of accessibility and focus instead on my disability. My mom and I field questions all the time about Cerebral Palsy and life with disability. This post will address some of those questions we have been asked along the way.
1. What is CP and is it progressive?
Cerebral Palsy is a movement disorder caused by lesions on the brain. These lesions are a result of a brain injury. The damage caused by these lesion is not progressive. This means that the damage that occurred at the initial injury will not get worse. In other words, what’s done is done.
In my case, I was born three months premature and as a newborn developed an infection which caused my brain injury. As a result, my gross motor skills, fine motor skills and speech were affected. I also have a visual perception deficit. This means that my brain does not always process the information my eyes send to it. As a result of my gross and fine motor deficits, I am considered a quadriplegic. I use and have always used a power chair for mobility. For my visual perception deficit I enlarge everything. I usually adjust my font size to 20 and make it bold. Visual perception deficits cannot be fixed with glasses because it is a neurological issue, not a vision issue.
CP affects my speech in several ways. I have poor breathe control, so I tend to run out of breathe before the end of a sentence. My facial muscles and the muscles that control my tongue are also affected, which makes my speech harder to understand. On top of all of that, I also stutter. When I am tired, sick or excited I can be even harder to understand. People who spend more time with me, understand my speech a little more. However, even my mom has to ask me to repeat myself. A lot of people feel bad to ask me to repeat what I have said, but just like anyone else, I don’t mind. I understand that I can be hard to understand!
2. Do you live in a group home?
I get asked this question a lot. Years ago, there were few options for people like me. Either you lived with your family, in a group home, or a nursing home. There are programs now that help disabled people with independent living. When I say independent living, I do not mean that I do everything by myself. Independent living means that I live in my own apartment, but I have a support system to make that possible. I have a team of healthcare workers who assist me with personal care and basic daily living. They help me with my personal cares, making meals, shopping, and cleaning. I make all my own decisions about my finances, where I live, what I eat, dating, etc.
I feel that independent living gives me a higher quality of life. I am able to make informed decisions and do not think I could do that in a facility. I am a fairly private person and like the privacy of having my own place. Although, I would have more daily opportunities for socializing in a facility, I have more control over my social life living on my own. I can have get togethers with my friends whenever I chose. Outside of the standard apartment rules, I set the rules for my apartment. I prefer this rather than living under the rules of an administration.
There some disadvantages of living on my own. I do depend on my van to get out and about. When the van is not working, I am basically stuck at home. If I lived at a facility, they usually have reliable transportation for the residents. I do not have overnight care, so once I am in bed, I am there until someone comes in the morning. I have great caregivers and a backup plan, but there have been times when no one showed up when needed. One time there was a fire in the building and I was unable to get out of bed. Luckily, I have a life alert system and the firefighters knew where I was. They came into my apartment and checked on me. My mom came shortly after.
I like being the captain of my own ship. I will always choose independent living over a facility. If I am unable to do that, I would next choose to live with my mom or other family member. However, I am the type of person who would find a way to be happy in my situation. If I had to live in a group home, I would adjust and find the good in the situation.
3. What do you like to do?
Sometimes people assume that because I am physically disabled I am limited in my interest. Believe it or not, my hobby is sports and cooking. I cannot play sports nor can I cook. However, since I was a little kid, I have found ways to reroute “can’t” into “can”. In other words, I do it my way. When I was a kid, I participated in adaptive sports and I assisted in coaching football. When I was helping with coaching, I also assisted in the receiver drills. I use video games to participate in sports. I have played every Play Station Madden Football game, MLB game, and WWE game in existence. I have also attended professional football, baseball and wrestling events. I love to read stats about the players and the games.
I attempted to do some cooking and it never quite worked out. However, I have found other outlets for this hobby. I watch a lot of cooking shows and read up on recipes. I love to eat out and have combined this hobby with my blogging. Many times when I review a restaurant on accessibility, I include my review of their food as well. Recently, I have had to switch to a gluten free diet, so my mom and I try to come up with “substitute recipes” for my old favorites. For example, I love Philly Cheesesteaks. We have created a cheesesteak omelet, cheesesteak quesadilla and a cheesesteak hash skillet!
Another hobby I have is bowling. I can’t walk or even hold the ball properly to bowl. I have found bowling alleys that provide ramps for the bowling ball. Whoever is with me lines up the ramp and I push the ball down to the pins. My highest score to date was over 200! Adam, my caregiver, is really talented in lining up the ramp!
I have other interest that are very wheelchair friendly! I love to do dream interpretations and horoscopes. I like watching tv and playing video games. I love to watch medical shows, rehab shows and police dramas.
When I have an interest that I can’t pursue in the traditional way, I research and find a way I can participate. There is more than one way to skin a cat!
4. Do you prefer to date someone who is disabled?
I hate this question. To me this is no different than expecting someone to only date within their race. When I consider dating someone, it is not based on their abilities or disabilities, race, religion or culture. I consider who they are as a person.
To be continued….(If you have any questions, please put in comments or send me a private message via Facebook)