I know what it's like to have parents who would have done anything to get me to walk. There's nothing that we wouldn't try, nowhere we wouldn't have done. It seemed like Cerebral Palsy couldn't possibly had been a match to the passion and determination of my parents. Never giving up, never standing back. I recognize match of the same drive in some of the parents of the younger kids I interact with. The "we can beat this" and "all hands on deck" approach. But then, not to discourage anyone- I think they're fairly new to this. Not to say their enthusiasm will fade, but it may change and gravitate toward other things over time. My perspective is different of course, because I'm not a parent determined to help a child. To me Cerebral Palsy is not the worst thing that could happen. It's something that I got used to, for the lack of a better word- something that is a part of me to the extent that I wouldn't be able to imagine my life otherwise. I don't want to "get it out of me" so to say at all cost. It's not out of despair, or resignation or laziness. I think it may be part of a natural process that many CP parents go through. We were fighting it till I was about 16. Conductive Education in Warsaw, Bobbath concept, bouncy balls and mattresses, exercising and physiotherapy in Warsaw. Biking, horse riding, walking in braces every day, all week long, every week pushing myself physically in one way or another. But then, I went to high school- and all of a sudden we became more and more interested in things like how do I get around and where can I go. My father, the same person that had me stretching, kicking, doing sit ups in every spare moment was now pouring concrete all over our apartment complex so I could get on and off the sidewalk and building ramps. Because fighting the good fight is good, but then you need to go and live in the real world. Don't get me wrong- hats off to the parents of seven year olds who are on the forefront of every research bit, every medical theory and every ounce of hope- I just think the most difficult transitions are still ahead of them. I'd say many things were easier when I was seven. My parents could have just grabbed and pull me up with my arm. Of course, when people ask me about my disability, my history, my life story I gladly speak. And if I can give hope and inspire change I will always do so, but I notice the same kind of issues I've had when the Peto community was trying to get me involved. They were seeing me as one of them, but I really wasn't. I'm not a therapist, I'm not a parent, I'm not an educator (on things other than my life). In some respects it feels like it's not my fight- not anymore, not like it used to. It's something I was involved with or something that I happened to experience a lifetime ago. My perspective is different. Rather than the limiting perspective of CP or "beating it" through CE I'm more interested in disability in general. In what people know, what they do, how active they are, how the public sees them. Issues that are common to many of the mobility impairing conditions. I care about also partially because it concerns me, but it concerns all of us. That's why I started the Florida Disability Access and Awareness Foundation- because I care about the image of the disability community as a whole. When I'm faced with a flight of stairs it doesn't matter what my diagnosis is, nor does the guy who tries to give a dollar to me for being in a wheelchair. The bus driver if he rolls his eyes and passes me by doesn't give me props for being a well adjusted with my spastic quadriplegia. That's why I'm doing this now. I guess your priorities depend on who you are and where you are in life But I do think that we are on the brink of something great. FDAAF has three new projects in the pipeline and I'm incredibly excited. Go ahead, feel free to ask how you can join.
Post a Comment