Denise, How could you have denied a physical disability ? Kathy ----- Original Message ----- From: Denise D. Goodman <[log in to unmask]> To: <[log in to unmask]> Sent: Monday, November 01, 1999 10:10 AM Subject: Validation/CP Kids & Adults > My elementary exaltations of the support this group brings me personally (as > usual :D) were elegantly expounded upon by Steve. The "support" I find here > is also what aides me in trying to " ... find myself in daily acceptance and > celebration of the primary disability that has and does cause me the greatest > pain and difficulty of my life." > > Unlike Steve, I haven't quite reached the "celebration" stage. I still > struggle with maintaining acceptance. This is difficult for me because for > years and years I lived in denial of my disability. I was (or thought I was > :D) a "passer." I now find myself struggling emotionally with the secondary > debilitating conditions which interfere with my own set ideal of who I am, or > perhaps, who I was. > > PEDIATRIC VS ADULT: I've been trying to keep up with the various current > threads. Forgive me in advance if I restate ideas, make points already > covered, or miss the gist of what's been said. > > I know of late there has been some discussion on pediatric verses adult cp > issues (research/funding/difficulties, etc) In my own experience as a child > the taunting, cruelty, and difficulties faced (including surgery/braces/PT) > were not nearly as frigtening as what I now face. > > The parents who participate here act as proxy for their children. You are > the ones who project into your children's future. You try to utilize every > available resource to ensure your children reach their full potential (which > is natural and the right thing thing to do). As a child, my parents also did > this worrying for me. I only had to deal with the day to day difficulties. > The name calling. Feeling left out, unworthy, defective. I was also > motivated by promises of someday being "normal." A good girl who does her > exercises, wears her braces might someday walk straight. This of course > wasn't true. All that was done was merely to maintain or slightly improve my > existing abilities. > > Once I was older (early teens) and understood what I had was all I was going > to get (mobility wise), I did have anger and restment. Once I finally > accepted this I was fine, UNTIL I hit about age 24 when I started to > experience all of these "secondary" conditions and I began to loose the > precious abilities I had worked so hard to maintain. > > Now, as an adult, I am repsonsible for my own projections into an unknown > future. The same fears and doubts my parents must have faced two decades > before now became mine to bear. The only problem with this was once I began > to search for help, information, some hope or explanation - none were to be > found. > > As parents you may not feel there is enough information or resources > available for your children. Compared to that which is available to the > adult cp patient, you have ten-fold the options which are open to adults. > > Just think how terrifed you would be if the medical community told you there > was nothing wrong with your child, when you KNEW they were having problems > and getting worse each day. This is how I feel facing the future as an adult > with cp. > > I would never try to take anything away from the children. Hey, most of us > (with maybe the exception of Steve :D HA!) was once a child. Many of us here > have children of our own and know the paternal drive where you would gladly > lay down your own life to spare your child. I think the important issue we > need to keep in mind is (and I believe someone else had made this point, but > it is so important it is worth restating) = All of the "adults" here are the > pioneers who are helping to pave the way for the children. If we make a > collective shout loud enough that the medical community can't ignore, perhaps > they will do the necessary research which will help prevent the cp kids of > today from facing what the adults now face. > > Many of the programs the children have open to them did not exist when I was > a kid. In fact (which I've mentioned before) I was in the first pilot > program (Title 6) which ALLOWED disabled children to attend public school. > If I'd been born a few years earlier, my parents would have had to home > school me, or drive nearly 40 miles to a childrens hospital, [or hide me in > the attic :D {kidding}.] Mainstreaming and inclusion would not be in place > if the CP adults here didn't "storm the beaches." The attitudes toward the > disabled have also come a long way and many of the adults here were the ones > who had to suffer through the indignities and ignorance before this change > could ever take place. > > Steve said, "Every day I feel less shame about how I appear, though old, > frail ..." > > Personally, I had lived my life in denial of my disability. My shame was > never felt because I refused to believe/accept I was disabled, despite the > daily name calling and cruelty of other children. As an adult, no one calls > me names (at least not to my face :D) YET, it is now impossible to deny my > disability. In addition to dealing with the physical problems, I find myself > more "handicapped" by my inability to accept my "new" limitations. Each day > I struggle to hold on to acceptance. The support of those here help me > because like Steve, I find " ...validation and joy in my CP "tribal > identity." " Actually, I'm still working on the joy :D > > Anyway, that's all I wanted to share. Take Care, Be Well: Denise. PS: HI > Mag, good to "see" you again too! >