Wednesday, September 27, 2000
Hurt
I've been greatly hurt by this group. I got a letter ordering me to apologize to the committee whose CP page is full of misinformation and inaccuracies. This misinformation could scare someone reading the page, and have a child with CP and panic because this page says the child will never move, be retarded and may be deaf, and not speak. Only the speech problem is attributed to CP. Those with CP usually have high intelligence, and no sensory problems related to the CP. Any problems that aren't motor related, or speech related, are not due to the CP, but due to other disabilities.
But the leader of this committee wanted more than the two apologies I already gave, because they weren't "sincere". Sure they were, but I'm not going to apologize the way I was ordered to, because I don't believe in what they want me to say. Guess I'll lose all positions there, and probably be banned from the group. Right now, I don't care.
posted by ">DanaWheels
~*~ 9/27/2000 11:49:14 PM ~*~ link
Monday, September 25, 2000
Perspective
Today, I got the shock of my life. One of the groups that I belong to has a website and it gives information about health issues. However, the main thing is: "Supporting Chronic Illness", and they have links for disabilities, including Cerebral Palsy. I had emailed the person in charge of the site, that I was offended by the site because Cerebral Palsy (CP) isn't an illness, it's a disability that doesn't get worse, like some other disabilities. The information on the site was also in error, and I made it known about the problems, with the site, but didn't receive an answer. I finally got tired of waiting for an answer, which has been about a month, and posted a message to the mailing list. I was told that there'd been an answer sent. Also I was told that I should work WITH the committee on the site. I'm already stretched almost to the point that I can't join another committee, and I said so. There was a message from a friend that basically I felt like I was patted on the head and told that if I had any problems not to post it there, but to send it to a specific email address.
I don't feel that they really took me seriously. The disabled are NOT sick, and many disabilities don't become worse as time passes. Some disabilities DO become worse, and can be considered chronic illnesses, but the website should diffinate between them, and be more sensitive to the way the site sounds. It sounds like it's talking down to the disabled, and that their information is wrong about CP. The excuse was that they used medical resources... I countered that medical sites can be wrong. I know someone that states she has "Cerebral Palsy of the Spine" and there is no such thing, but because her father is the head of surgery for a hospital, she took his word as gospel. Cerebral means BRAIN, it has nothing to do with the spine.
With the problems that many disabled have, getting their civil rights, this website does a disservice to the disabled in this group, and they should change the way the site is written before someone decides they are violating the ADA (Americans With Disabilities Act) and sue this group for misinformation and discrimination.
posted by ">DanaWheels
~*~ 9/25/2000 07:41:28 PM ~*~ link
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