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February 27, 2009

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Blake

Amen. Thanks for the shout out. I don't think they even tried to understand Jerry's position.

P.S. - Aw, not even the typewriter scene? :-) http://www.youtube.com/watch?v=a7ySmnxy29Q

Blake

By the way, the "Activists hate on Jerry Lewis" article was written by my brother and originally ran in Mississippi State's student newspaper, The Reflector.

Lisa Moon

As always, an outstanding post, OSM... and I have to say, I fucking LOVED the 'soundbite'! That was truly AWESOME!
Will be checking out those links more in the morning. :)

One Sick Mother

Blake,

I amended the description on your brother's piece. (and that typewriter thing was funny!)


Lisa,

Thanks, I loved it too. That's why I let him have the last word, and those of you who know me well, will know how dearly that cost me! ;)

-OSM

Ben Mattlin

Sorry, but you've got it very wrong.

I was born with spinal muscular atrophy. I'm a former poster child for the MDA. And though I concede that MDA funds some medical care--visits to a neurologist that are not fully covered by health insurance--it does far less good than it claims, than people like you assume. You have been deceived.

First, the bulk of the money raised goes to "research." But what's included in that research? There is not one important medical discovery that has improved the lives of people with MD or related conditions which can be attributed to MDA-funded research. Not one in some 50 years.

Second, MDA's executives are very well compensated, and there are even rumors that Lewis himself and the other showbiz talent on the telethon are actually well paid as well. Rumors are not proof, to be sure, but I do know of one former MDA top brass who quit in shame when someone questioned his flying first class for the charity. It was always first class, and deluxe hotel accommodations, he told me. Not typical practice for charities.

Given this potential for abuse, Lewis' derogatory comments are relatively unimportant. More significant: Cure is NOT the only hope, the No. 1 priority, the "only one end ... and almost any means are justifiable," as you state. For parents of a dying kid, this may seem to be the case. But what about improving the life of the child with a severe disability, no matter how short that life may be? Isn't this a justifiable priority, a goal, a worthwhile pursuit?

Nevertheless, this is precisely where the MDA falls short. Yes, it funds summer camps for some of its kids. Yet it has been completely silent on issues such as equal education for those kids, or access to public accommodations such as stores, movies and parks, or equal opportunities in the workplace, to give those kids a sense of purpose and hope and--most importantly--a sense of value in our society and self-worth.

If all you're doing is waiting for a cure, it becomes impossible to adjust to or accept life with a disability, to value your life as it is. Yes, in that case you might as well shoot yourself.

True, the MDA can't do everything. Fair enough. So let's be clear: It is a medical charity. It has not saved a single person's life, but it does provide a degree of medical attention for neuromuscular conditions. That is all. So why does it claim to be and do so much more?

Furthermore, medicalizing disability detracts from full inclusion, fairness, equal access--from the very idea of being welcome and respected in society and maintaining self-esteem. Medicalizing disability says MD, ALS, SMA and the rest are not just a part of the diversity of humankind but, rather, blights on humankind, problems to solve and nothing more.

The whole idea of "help Jerry's kids" doesn't help the kids get respect, access, equal education; it doesn't help them learn to feel good about themselves as they are. All it does is say they ought to be like everyone else. They ought to be able-bodied, like Jerry. That's why we consider Jerry a bigot. Through his cause he's saying that these kids aren't good enough the way they are.

In addition, I and others have tried to explain this to the MDA's top managers. My family has always been supportive of the charity, and the head of the local support group once suggested I should take over the leadership of the group because I was making so much sense. So I thought perhaps the MDA executives would listen to my suggestions for updating their message. But to my shock, I received only hostility. They don't want to hear from their constituents!

My only question is, why does Jerry do this? Does he mean well, on some level? Perhaps. But the arrogance in not letting people with MD have some say over their own charity is, at best, akin to like colonialism. At worst, well, even Hitler thought he was doing good by improving the breed.

(Apologies for going on so long. I'd be happy to discuss this with anyone who is seriously interested. Just Google my name. You'll find a way to reach me.)

One Sick Mother

Ben,

Thanks for taking the time to post your well-thought-out comment

I totally hear you on the "accept me as I am" front. We get a lot of that in the Autism world: The 'Autism Speaks' people and their ilk on one side, who want a cure for this "terrible disease" and then the adult Aspies on the other who feel quite affronted by this approach, because Autism is a huge part of who they are and they don't want to be "cured" of their essence.

http://onesickmother.typepad.com/my_weblog/2008/10/to-cure-the-incurable.html

The above link states many of my views on cures for genetic conditions. I guess my stance is different on progressive and degenerative conditions. Autism (except CDD) and EDS are not progressive. -OK EDS can cause joint degeneration, but it is generally because of wear-and-tear and not part of the inherent "disease" process.

To take some of the thoughts I voiced in that piece: Do I think a full-out cure for MD et al would be appropriate for all who are already born? No. And because it is genetic, I am guessing most of a cure, were one found, would go somehow to prevention. But what if there was treatment (i.e. "cure" ) that could stop progression (or maybe even reversed it a little bit)? Would I want Stephen Deal to retain what little hand function remains? Yes. I would. Would he? You would have to ask him but I suspect so.


Would I want a way to stop progression degenerative conditions like MD, MSA, SMA, ALS etc? Yes! I think I assumed this was the kind of research the MDA funds. Maybe I am completely wrong. I have not delved deeply into the MDA at all (I believe this is difficult to do).

The points you make about the MDA are well taken, but I do wonder if all are realistic? If I want my Autistic kids to feel good about themselves, there is no way I am going to the ASA or similar to meet that goal. I am doing that at home and in the community. A charitable organization has stated goals, and usually a "cure" is one of them.

Now, yes. I totally agree it would be much better to have people who actually have this and related conditions running the show at the MDA. I am surprised this is not the case (although I did read that Vanity Fair piece. I guess I figured something had changed in 16 years).

I am intrigued by this whole issue. I really want to explore it more. I will research more -when I have time (I am behind on at least one more blog post and a bunch of other stuff in real life) and write at least one more post on the subject.


yanub

OSM, indulge me in some pendanticism. I think you are wrong in dividing "progressive" from "degenerative."

From Medicine.net:

Progressive: "Increasing in scope or severity. Advancing. Going forward. In medicine, a disease that is progressive is going from bad to worse."

From Everythingbio.com:

Degenerative disease: "A disease in which the function or structure of the affected tissues or organs changes for the worse over time. Osteoarthritis, osteoporosis, and Alzheimer's disease are examples."

If you do a search with both terms together, you will find a plethora of conditions described as progressive degenerative. Included in that is EDS. We aren't really any different than people with MD or ALS when it comes to our bodies shearing apart on the dotted lines. It's just that the dotted lines are different. And it isn't like there aren't children dying from EDS, either. And adults. Sure, most of the types are not associated with premature death, but all of them are associated with premature debility. And isn't that pretty much true of nearly all disorders--that some people have more severe symptoms and others less severe?

One Sick Mother

Yanub,

Good point. I realized when Amy called me out on the scientists in "Charitable Thoughts" and now this, that I have a very bad habit of overgeneralizing a concession when I am trying to make a point. I'll work on that.

Thanks! :)

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