Having a disability such as CP is a challenge, but not the end-all. It has its ups and downs just like everyone else. Some people choose to see themselves as just their CP, while others prefer to see their CP as only a part of their identity. During times of struggle, my disability made itself known, especially growing up – I was the girl that turned the town on its head, finally pushing it to enforce the ADA laws of 1973 and 1990 – an accomplishment that really makes you stand out. It’s ironic, when you are that young, all you just want to be is just a regular kid. As much as my family tried to make my life as “normal” as possible, there were still many times that I just felt like I was my disability.
Attending public school was a challenge for me. At the time I was growing up the ADA laws had been passed but it was a struggle to have the education system enforce them – as a result, during the 80’s and even the early 90’s the school building failed to meet any accessibility needs. This was the moment I started to feel like the odd kid out. My family had to dig in their heels and fight with the town to help secure the education I needed.
The next battle I had to overcome was people’s ignorance. In my experience, ignorance is the most challenging part about having a disability. When I grew up, people like me were just starting to be active in the community.When I think back on everything I went through, I truly feel like I’m onet of the first generations of the disability community that had the right to integrate with regular society.
Surprisingly though, in my earliest years, I’d have to say the most difficult person to teach was myself. From a very young age, I have always feared being just another number. There are many reasons why, but I’d have to boil it down to the fact that it was hard to find others to relate to, and there wasn’t much interaction with “regular” folks. When I did have interaction, I was at the rehab center getting therapy at the time I didn’t even realize there were different types of CP. I even thought if another kid had another version of my illness I’d catch it like you’d catch a cold.
Another challenge for me was I had always had contact with people who had been so pessimistic about their disease. I was in such a vulnerable state myself that I didn’t want to add their negative energy to mine – at times, it was hard to stay positive.
I consider myself lucky, my family has always been blunt with me about my condition. I have since met so many others whose families either did not know how to discuss their diagnosis or who would flat out not broach the topic. This lack of communication would lead to the child not getting the help they need to be independent or push the child to flee and find the independence they craved. My stubbornness held me back at times in my life because I didn’t like that my life would be more challenging than “ normal.”
It wasn’t until I was faced with another disability (Psoriatic Arthritis) that I started going down more of a black hole in life. One night I found myself in a pool of tears at that proverbial fork in the road and did not want to deal with my disabilities or fall deeper into the black hole. I have felt I was lost forever, but I somehow found that lost strength and determination that had gotten me through most of my life on this particular night. I had to make the choice of do I find out what life would be like with PsA or do I find out what life would be like as an adult with cp.
As a child my parents were in charge of my care but as a fully grown adult with a disability that only affected my body not mental able I should start taking control of my own life. I knew with the right medical care and treatment that the PsA will go away but like it or not the cp was a part of my life from birth and will be here to the day I live this world.
I look deep inside me, fond that straight and determination that I had from the day I was born but somehow lost for a time in my life. I looked up United Cerebrel Palsy up on the net,as a child My parents and I were part of one for support and I thought maybe there would be a program for adults with cp. I found the closes UCP by me and e-mailed them to ask if they had a program that I might fit into, I got an email back saying they had and independent adult program that I awould fit me.
The first time I went I was afard but I soon relized they were like me and posatvie like I always hope to meet. Soon after I became close to them and made friends.By going to UCP unlocked a door in me that I never thought I would have unlock in my life. During the eary years at UCP I was trying find out where I fit within the cp commutty but I also was felling lonely because I wanted also be a normal adult and be able to do normal adult things but at the sametime.
I also felt I was in several parts. There was the women side, the cp side and who I was and what I wanted in life but I never knew how to put them as one. Once I started see that people in the group was living indepanet life and I thought I could be like that. My biggest problem was I always put so much gult on myself for felling like I wanted to be just an average person but how could I do that without the cp getting in way this was the reason I felt like I was in so mant parts.
I started get to know many people in the group on different leaves. There was one I felt more close to because as we started talking I started to see the individual had a lot of the same felling as me, we became friends. As we got to know each other the friend showed me that just because we have cp there nothing to fell guilty about, we can live life just like everyone else. The friend showed me how to use social media to learn about cp more.
Once I start understand some about I should let the cp empower me and not let me hide within myself, I started a social media group of my own name Work Out With Cerebral Palsy. At first I was just talking about working at home,in the gym, or at pt to keep ours cp body health and active. Soon people with cp, family members of people with cp and people in the cp field was starting to following me and asking me questions. As time went on I began to see Work Out With Cerebral Pasly became a mantra for my life. Over time I turned Work Out With Cerebral Palsy to W.O.W.C.P.
Over the past 8 years life certainly hasn’t been easy for me but my mantra of W.OW.C.P. has kept me going. W.O.W.C.P means no mater if we are workout in a gym, pt or just going thought everyday life as a person with cp it’s a work with every breath we take to the big things in life. Its a work out just to show the world we have just as much right to be in today’s world as anyone. It that our wrapping my like different then other people wrapping.
Understanding myself with cp has taken years, a lot of up and down, and I graduated from the school of hard knocks to learn about myself. I will never be entirely comfortable with who I am but just like anyone else
when you unwrap, you’re wrapping your just as human as anyone else.