posted
I really like the convenience of my local grocery store. It's less than a mile from my house. After years of going there 2-4 times per week, I am friendly and recognized by most of the staff. It's comfortable.
For the next few weeks, though, it's going to be very uncomfotable.
The grocery store is owned by Safeway and Safeway is doing major fundraising for the Jerry Lewis Telethon. And they're doing it in a very intrusive way - big stickers in every aisle asking you to help "Jerry's Kids" (for those of you who met Diane last weekend, Lewis refers to adults like her as his 'kids' - something she finds offensive and so do I.) Then they ask me if I want to donate to the Muscular Dystrophy Association while checking my groceries.
I don't want to lecture the checkout people or the management - it's not their choice and all it would do is spread the feeling of unpleasantness. So I just suck it up and say a simple "no" when asked - strange in itself because I almost always say "yes" to a buck in fundraising for other stuff they're doing.
In case you haven't guessed, this is my way of getting a rant out of my system without doing one in the store.
same problem of making powerless people feel unnecessarily uncomfortable - it doesn't serve a useful purpose.
However, I may do what you suggest and keep them in the van in case we're stopped at corners by firefighters wanting us to put cash in their boots in their fundraising efforts. I think it's something firefighters should know - and maybe they will be a little hesitant about approaching people in accessible vans as a result.
I realize the choice about what is acceptable to me in terms of whom to educate isn't fully consistent or logical.
posted
For those who are interested, here is the Better Business Bureau's report of the MDA, which is the Association which benefits from the Telethon.
It seems better than your average charity, with slightly high fund raising costs (17%), but about 75% of their income is used on programs (Service, Research, Education).
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posted
As the wife of a Safeway employee, I can say that I hate a lot of the stuff that Safway does (they don't call it slaveway for nothing ).
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quote:For those who are interested, here is the Better Business Bureau's report of the MDA, which is the Association which benefits from the Telethon.
Dabbler,
Just to point out, the BBB does not evaluate the MDA or Lewis on its success in promoting a picture of dignity and worth in regard to people with disabilities.
That really wasn't my point, since I made no comment about how the money is used, just about how it is raised. But I guess I understand why you wanted to post that.
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posted
Yes it was, I read it too and was suprised.
I would need to read more about it, but it doesn't look like the work of a man who has worked tirelessly for people with disabilities for several decades.
It reminds me of the Bill Cosby quote about minorities that was quoted out of context over and over again.
Not that I am uninterested in finding out more....
quote: Wasn't one of the goals of the site you linked to an auditing of MDA's finances?
Storm,
that's true - but it's a minor point. I seem to remember several years in which they were on the IRS list for lack of disclosure - that doesn't automatically imply misconduct, though. And they've probably improved their accountability since then.
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I would need to read more about it, but it doesn't look like the work of a man who has worked tirelessly for people with disabilities for several decades.
It will be hard to get the quote in full context. CBS removed the quote from the rebroadcast of the interview (you CAN rewrite history).
The remark was in response to a question about critics saying he promoted pity of people with disabilities. That was his rational reasoned response.
My SO Diane has one of the conditions that falls under the MDA umbrella. She (and many others with disabilities) don't feel that he's worked "for" people with disabilities at all. It's the typical charity mindset - the giver determines the nature of the help, how it is given and reserves the right to refer to recipients as condescendingly as he wishes.
posted
Yeah, I just wanted to distinguish the MDA from Lewis. The site linked from you had a lot of anger towards both Lewis and MDA, while I think the MDA shouldn't be held as accountable for Lewis's bad-character as Lewis himself.
And if people want to donate to MDA, they should do so directly, and not through the Telethon.
Posts: 1261 | Registered: Apr 2004
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MDA is the direct beneficiary of Lewis' efforts - he's their main spokesperson. They ARE accountable for Lewis' behavior and the "pity party" atmosphere of the telethon itself.
During the 1990s, there was a really infamous segment of the telethon in which (I think) Kathleen Sullivan horrified viewers by asking two parents how it felt to have a son knowing he'd be dying before adulthood - the kid was sitting right there! Then Sullivan was pulled for awhile, and then did just about the same thing with another family all over again!
The term "gag a maggot" comes to mind.
About 3 years ago, Lewis himself pitched by telling the story of a young boy he talked to who didn't want to be put on a ventilator - his reason being he didn't want to be a drag on his parents anymore. Lewis, instead of trying to alleviate the feelings of being a "drag," told him to hang in there for a cure. Nothing in the story suggested anyone tried to tell the young guy their lives would be WORSE without him. The kicker was that the kid apologized to Lewis for failing him (not getting cured, I guess). The kid died without a vent - Lewis talked through tears of his "bravery" and pitched for money.
It was one of the few times I've ever been moved to tears through feelings of rage.
Is MDA responsible and accountable for all of that?
posted
*reminded of a book called Moving Violations* I agree with you all. People have a simular attitude towards people with autism and I hate it.
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posted
There are separate issues here. I understand that you, and many others, disapprove with the methods of Lewis and MDA to raise money, and believe that their message of pity creates second class citizens. I can see that, and I understand it.
But that's not all the anger I see. One of the articles from your link has this:
quote:With all this money coming in, I would expect the direct services provided to people with neuromuscular diseases to be much more extensive, and more relevant, than they actually are. I would expect, for example, that when a person develops a condition which begins to limit his or her mobility, that MDA might come through with some money for access modifications to the home, so that the family wouldn't have to choose between moving to an accessible house (which are hard to find), or hauling the person up and down stairs all day. I would expect some support services for independent living -- someone to assist with personal and household needs, training in things like cooking and cleaning from a wheelchair, and help with transportation. I would expect MDA to provide a motorized wheelchair for anyone who wants one. Such a chair can boost a disabled person's quality of life enormously. Instead, MDA has very restrictive criteria for determining who receives a motorized wheelchair.
That's a lot of accusation, but there wasn't anything to back up those statements. Just anecdotal "this is what I see." Maybe I need to spend a few hours reading all the articles and I'll find proper research into MDA practices. But what it seems like is that many people are angry, and are willing to lash out however they can.
When I pointed out the BBB guide to MDA, I wanted to provide an unbiased, brief report on the statistics of the MDA as may be relevant to a potential donor.
Here it is: Patient and community services, net of third party reimbursements: $74,645,776
Research: $34,310,933
Professional and public health education: $20,426,570 ----- total: $129,383,279 for 2002-03
Now a lot of that complaining in the article I read centered around how much money goes into research and how useless it was. And maybe when the article was written 10 years ago, they had a different breakdown of program allotment. But they don't give any support to their arguments. And that annoys me.
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From what I can see, the parts that are annoying you so make up a very small part of the material. These are materials put together by and for grassroots activists - not the kind of thing that always fits together. It's not the kind of "public information" package a richly funded organization like MDA is going to put together. In fact, it's not an organization at all - just like-minded activists reaching out to each other.
It's a minor theme in the telethon controversy, although part of the issue that is being touched on here is that "priority" consumer services are determined by MDA, rather than consumers themselves.
There's so much other stuff on the site - is it so difficult to discuss for you? You would rather focus on a couple of these otehr points than the main ones about promoting pity and a negative image of people with disabilities?
That's the sense I get.
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