Edge-centric

A bunch of medblogs are also annoyed at the show, which sees "miracles" instead of science and skill, and touts untested or rarely performed procedures instead of safer, standard treatments.

Kim Steadman at Healthy Policy:
http://healthypolicy.typepad.com/blog/2006/03/the_deserving_s.html

Graham at Over My Med Body:
http://www.grahamazon.com/2006/03/miracle-workers-not-doctors/

So, this show isn't winning kudos from anyone who knows what they're looking at.

If there's ever a reality show about making businesses accessible, can they also cover IEPs? Here's my pitch: It's a bit like Survivor, except instead of an island, there's a tiny "conference room" full of boxes and old poster displays in a portable across the parking lot. Five school employees and one parent enter--who among them will form secret alliances, who will make surprising revelations, and who will, finally, emerge victorious? The winner doesn't get $1mil, just an enforceable school plan--until the next meeting. See, built-in sequel potential....

Mary;

Thank you for the link and comment. You said,

"But blame disability rights movement activists, too. We simply haven't made it clear enough that the problem is not "broken bodies" but broken policies and broken laws. That the problem is a denial of rights. We don't stay on message. We don't raise hell enough. We don't write enough letters to editors. We don't blog enough. We don't write enough op-eds."

My wife is on the organizing committee for a Rally in DC on the capitol lawn May 2nd, preceded by one and one-half days of symposium on paralysis. We could sure use some activists to join us, in wheelchairs or not. The law we are promoting is not broken, but the process is and we want to change that.

This rally is held in conjunction with the Christopher Reeve Foundation for the purpose of promoting the CR Paralysis Act. This bill is about two things: advancing collaborative research in paralysis and improving the quality of life for people living with paralysis, which, I would argue extends to many with disabilities other than paralysis per se.

During this three day event participants are encouraged to meet with their legislators and lobby for the CRPA and any other issues pertinent to their needs. In light of Dana Reeve's recent passing, her friend, Susan Sarandon has accepted the offer to host the Rally.

The session presenters are outstanding and day two of the symposium will include an educational portion on the lobbying process including talking points with representatives and senators.

The website is: http://www.unite2fightparalysis.org/Work2Walk/index.htm

I understand the fascination with Christopher Reeve's cure mentality met mixed reactions in the disability community. However, this Rally and this legislation is not about cure but about the right of the disabled community to demand more from an indifferent Congress.

If anyone has suggestions on how to Rally the troops, especially those in the DC area, we would appreciate the help. Wouldn't it be wonderful if we could fill the Capitol lawn? I invite you all to come raise a little hell with us.

Sincerely,
John E. Smith

Mary Johnson certainly makes valid points as always in her blog. We're seeing a weird meld of Touched by an Angel joining Jerry Springer to reach the population the producers most cherish.

But I truly believe we as people with disabilities, in our own pride, forget why people without disabilities hate to see differences. It's a simple fact: evolution.

All the way through history, people have looked to the physical to judge a person's worth. We've just started progressing away from that in the past 50 years, and it may take another 500 before we get there fully.

Should people without disabilities change overnight to fully accept and understand disabilities? Yes. Will it happen? No. Very few people without disabilities, even among my friends, can truly understand and appreciate disability without experiencing it themselves.

We can scream and shout about the evils of this show and others, but until people want to change and leave the pablum fed by television, change will occur slowly.

I'll leave you with these lines from Star Trek: Deep Space Nine from Laas to Odo, both shapeshifters, about humans:

"...this may finally make you understand that you don't belong here. You saw the hatred in that Klingon's eyes, perhaps now you'll recognise it when you see it hiding in the faces of your so-called friends. They tolerate you Odo, because you emulate them. What higher flattery is there? 'I that can be anything choose to be like you.' But even when you make yourself in their image they know you are not truly one of them. They know that what you appear to be does not reflect what you really are. It's just a mask. What lies underneath, is alien to them. And so they fear it. And that fear can turn to hate, in a blink of an eye."

I think they should do a reality show on people who live in a group home for developmentally disabled adults like a day in the life of a group home manager. I also think they should do a reality show on parents of a severely disabled child and how they deal with life from day to day getting them up out of the bed and in their wheelchair and get them dressed (if they are not toliet trained they need a diaper even if they are 15) and get them off to school whether it is a school wheelchair accessible van or their own car or van which means getting them ready probably a couple of hours before they need to be at school. Follow the child as they deal with the problems of being different in school they may not be able to play on the playground equipment.

F--- it. I'm a real Survivor. I want my $1 mil.