As blogger Wheelie Catholic, my first response was to pray for Jerry Lewis and all of us when I heard bloggers were speaking out against the annual MDA Labor Day Telethon. I join them. And yes, I know the telethon has helped many people over the years. I have no problem with raising money for MDA. My issue is how it's being done. Despite the ADA and advances we've made because of it, the telethon continues to portray people with disabilities as objects of pity. In this day and age, why is the poster child approach still being used?
Public perception about those of us with disabilities is beginning to change as we go out into the world more frequently. Americans see us in restaurants, movie theaters and other public places. We attend college in higher numbers and are continuing efforts to improve our representation in the job market. Our mobility—if we have the means—is at an all time high. We have better equipment, better care and live longer and healthier lives. Much of this is related to affording all that’s involved. Many Americans with disabilities, adults and children alike, may have the civil rights, but not the means to live fully with a disability. We can't afford what we need to do this.
Raising money to help disabled kids get the assistive devices they need and providing for their families is a worthy cause. I know the high cost of living with a disability because I live with quadriplegia. My sister and her family struggle financially as they raise a child with CP.
The charity model is not the solution. Why on earth would we teach children with disabilities that begging is the answer? Is that part of their IEP program? I don't think so. While it’s easier to fork over a check once a year than to commit to a community effort, let’s change our social programs so people with disabilities can attain a certain quality of life with dignity.
This is why I’m saying a prayer for Jerry Lewis — and for all of us. It's time to address the real problems and make some real changes. Let's grow up and discard the poster child model and start teaching all children that people with disabilities are not to be pitied, but respected.
10 comments:
I dread the telethon every year. I agree that we need an overhaul of the way our social programs work.
Thanks for this post. I never thought about how it made the kids feel to be put up there and be begging but you're right that's exactly what it comes down to and its old fashioned and needs to be changed. I teach high school and have a few disabled students in my classes. They impress me with their positive attitudes and work ethic and as I get to know them my perceptions are changing too. Am putting your blog on my reading list.
Janine
I like what you say but don't want to read about religion or prayer. Don't you know talking about religion in public places is offensive to the rest of us? That includes blogs if you ask me.
Great post!
I did a blog on the telethon as well at http://reunifygally.wordpress.com/2007/09/03/why-deaf-people-should-boycott-jerrys-telethon/
If you choose to come look at my telethon post then I hope you'll also stay and look around at some of the posts I've done about the ADA Restoration Act of 2007, which I think is another subject that people with disabilities should be up in arms about. And BLOGGING ABOUT!
To "antireligion": personally, I happen to be atheist too. And don't always like reading about religion and prayer. But the way I see it is: a blog is not really public space. What it is, is someone's sitting room into which the world has been invited to come and sit for a while. Because it's still THEIR home, they get to do what they want. And it's up to you whether you come into their sitting room and sip their coffee or politely say "no thanks" and move along.
If YOU set up your OWN blog and someone comes preaching to YOU about religion (or preaching to your other guests) in the comments area, then that's a different story. Because then that would be YOUR sitting room, in which case you'd have the right to tell them to go buzz off.
Thanks Ruth.
"antireligion", there is also free speech, especially on a personal space like this. you can just skip over the bits you don't like, just as anyone does with blog posts where they like part of it and not all of it. you can't tell her not to come at this from where she's coming at it from. (sorry for my english right there, that is all the grammar i can manage tonight.)
Hi Ruth,
I join you in the prayer and apologize for not being able to send you a resource that immediately came to mind as something you would appreciate. It is a booklet by Henri Nouwen called "The Spirituality of Fund-Raising." It is available free at www.henrinouwen.org
Henri's life was unrelentingly about relationship, intimacy, and a communitarian integrity of spirituality. It reminds me at root of what the Benedictines developed as "conversatio morum" -- although he simply used the word "conversion" which comes across as a little trite out of context.
I can't help but think he would enjoy the dialogue here on the appropriateness of talking about religion. On pages 13-14 he addresses the criticisms he received and concludes that talking honestly about money is harder than talking about religion or sex. That's because it too has to do with "that place in our heart where we need security, and we do not want to reveal our need or give away our security to someone who, maybe only accidentally, might betray us."
What has been most impressive to me throughout the blogswarm entries is the spirituality of compassion in the face of an abusive adversary. What I see missing, so far, are writers taking up your challenge to examine the potentially positive and mutually transforming impact of fundraising on giver and receiver -- the difference between a successful transaction and a successful relationship.
Scott - thanks for the info on Nouwen -I've actually read that piece. By coincidence he's one of my favorite spiritual writers. I have several books of his collected works sitting right here . I really liked David's post (over at Growing up with a disability) on pity and the telethon at his blog because it talked about a dialogue along the lines of relationship and giving. I'm planning on writing more about that here.
Thanks everyone for your thoughtful comments. I appreciate all points of view in this dialogue although I have no plans to change the blog to anything other than Wheelie Catholic!
Hi -- I wanted to make sure you knew about the latest that is happening with Jerry and his, yes, humanitarian award:
Jerry Lewis, the man who runs the annual Telethon to raise money for people with muscular dystrophy in the US is about to receive a humanitarian award. Many people in the disability community is protesting this award because they feel that Jerry perpetuates and entrenches negative, harmful stereotypes toward people with disabilities. More about the petition campaign at: http://www.petitiononline.com/jlno2009/petition.html
There is also a Facebook group at http://www.facebook.com/group.php?gid=40538392681
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