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Posts Tagged ‘visible disability

I Want a 10-Day Paralympics Extravaganza On NBC in 2016 With a Five-Hour Opening Ceremony!

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by Treadmarkz

Now that I have stated my demand, clearly and concisely, I’d like to note that once again in 2012 the Paralympics follows close on the heels of the Olympics. Once again it has been relegated to a Youtube channel, various other online live feeds, etc, while the Olympics (the Walkie version) is again a world-wide network TV 24-hour a day, weeks-long extravaganza. It’s probably on TV right now. Let me go check………….Yup. It is. Water polo.

Eighteen percent of the U.S. population has some form of disability. That statistic throughout the world is comparable. Everybody knows someone who has some kind of disability that would be represented by athletes in the Paralympic Games. Why is this not on NBC? Do we need a specific TV network just for disability-oriented programming much like African-Americans did with the BET network?
Come on, NBC, it’s 18% of the population! Think of the ratings! Even if just out of curiosity, huge numbers of people would be tuning in to see this. Think of the new ad revenue you would generate from a wide variety of sponsors.
And lastly, you would be providing a service. Network exposure for Paralympic athletes would show the world at large a new side to disability. For one thing, it would demonstrate how many disabilities are not visible, yet very real for the person living with that disability. And it would help able-bodied people become more knowledgeable about a wide array of different types of disabilities. This can only be a win-win situation. The Olympics this year got Paul McCartney to play the opening ceremony. I say we get John Mellencamp to play the 2016 Paralympics on NBC. He’s got spina bifida. See, a disability that is not visible. You’re learning something already.

If you agree, please pass this on.

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Sometimes You Need Not Look Beyond Your (Extended) Family

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by Treadmarkz

In a recent post I made reference to “support groups” amongst people with any given disability, and how I hardly ever met anyone with my disability, spina bifida. Interestingly, I have been fortunate to make connections with some really interesting people this year already, including a cousin of mine who I did not know I had until a few years ago. Even since learning of his existence, I haven’t seen much of him because he lives in another state. I added him to my Facebook friends list and occasionally commented on his posts, but really didn’t get to know him. But then recently I was flipping through some pictures of him on his page, and I found one which showed clearly that he was in a wheelchair. I did not know him to be in a wheelchair, and nobody ever told me anything had happened to him. So I asked him. And he told me he, like me, has spina bifida at the L-2 level.

Naturally this shocked me that he had spina bifida. Why hadn’t anyone in my family told me this? It would have been nice to know that I had another person to talk to about it. Turns out he himself did not know he had spina bifida until he was 21 when he started having medical problems. He’s had his ups and downs and has had times when he could still walk with braces, but he does use a wheelchair.

We both had doctors who told us (or in my case a doctor who told my parents) that our case would be much worse than it turned out to be. It is encouraging, and horrifying at the same time when you see how wrong doctors can be. But they’re only human. One doctor said my life would not be worth living, and a doctor told my cousin that he’d be paralyzed from the waist down by now but his paralysis is really just large areas of numbness in his bottom half.

Ever since finding this out about him, it has been great exchanging war stories – how we both struggled with math just as the doctors said we would (though I think I was much more hopeless in this category than he was).  But mostly we have discussed medical problems. Songs of our scars, ghosts of operations past. And he told me that he will be having an operation in the future which will put him in his wheelchair for several months. I let him know about how I “did my time” when I was in a body cast or had a broken leg at different times as a teenager. Made some suggestions on how to make the time go by and avoid letting your spirit hit the bottom of the barrel.

As I wrote LONG ago in this blog, many people (including John Mellencamp) have spina bifida but can walk. But I never knew of a case where someone did not know they had the disorder until adulthood. It’s been nice hearing about yet another of the various experiences people have had with spina bifida, and I have been happy to be able to give my cousin advice. I look forward to continuing our correspondence because I am sure we both have something to offer each other.