from a place of love

CHECK OUT THE BLOGSWARM OVER AT KARA’S!!!!!!(not too late to join, just email your link to consciouslycrip@gmail.com)

I didn’t think I was going to blog about the telethon, only because I’ve been up to my eyebrows in telethon-related organizing and with the campaign being posted tonight at midnight, I thought my position it was clear.

I have Muscular Dystrophy, but like NO explains on Think Freestyle I believe disability is a cultural identity and don’t feel the need to label myself with a medical diagnosis. Muscular dystrophy/congenital myopathy/or whatever the doctors are arguing “it” is, these aren’t words I use to describe myself, rather they belong to my doctors and the medical establisment [field or structure]. 

I’ve been reading Accidents by Nature, a book for younger teens written by Harriet Mcbryde Johnson, a woman who has been protesting the telethon for 17 years. The main character is one many disabled people can identify with as she grew up mainstreamed and separated herself from disability because society taught her that it was disabling unless she “rose above” when actually disability is just a natural, beautiful, complex part of the human experience. I don’t know if it’s because the book is set in NC and I recognize all the names, but it’s like I’m reading my own story. I haven’t reached the end of the book yet but I believe she will understand she is like the other disabled kids and learn to be proud of that, rather than trying to deny, hate, heal, erase, or “overcome” her disability.

I remember the moment I learned I even had a community.  It was the first time I didn’t feel like I had to “prove myself.” It was the first time I didn’t feel like I had to smile every second. It was the first time I didn’t turn away and disassociate myself from other disabled people. During that moment, Yoshiko was passing out “I-Power” stickers with our names on it, powerchairs were crashing into each other between tables, and for the first time it really felt like I wasn’t denying something inherently apart of me. It was very much like my queer “coming out” experience.

Yes, I don’t buy into a cure because I think it is surrounded in ableist rhetoric [talk where disability is hated or seen as negative]. Yes, I don’t believe in getting nondisabled people to pay for our shit (I’m not talking about services people are entitled to but community-related things)—I think if we want to create real meaningful change, it’s not going to be through grants or donations it’s going to have to be something we invest in and fund ourselves. However, the main reason I oppose the telethon is because I can’t sit by and let someone tell my people what we should think of ourselves. I can’t let a telethon, drenched in pity, define disability; even though I didn’t watch the telethon as a child, my concept of disability was quietly wrapped up in everything it promoted. I don’t want that to be the case for future generations of disabled people.

It’s true, the telethon is just one thing and Jerry’s getting old anyways. But maybe, if we keep faith and keep fighting, we can chip away at the charity model of disability until it crumbles away. Protesting may alienate some people, that’s understandable, but for me, it comes from a place of love and pride.

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15 Comments

Filed under abolishing medical and charity models of thinking, community, crip culture, disability, telethon

15 responses to “from a place of love

  1. Pingback: » Blog Archive » Blogswarm to Protest Pity

  2. bev

    Yes. The parallel with coming out as GLBT, very true for me as well, and the enormous effect of finding a community and a positive way of viewing my life. Thank you.

  3. I, too, see certain parallels between the experience of having a disability and being GLBT.

    I didn’t blog on the GLBT link, but I did blog on the telethon (from a Deaf perspective) 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.

  4. Pingback: Top English WP Blogs « Hành trang 8X

  5. Queerness and disability, parallels and differences… yeah, some deep links there. Something i’m definitely going to blog on, at some point…

    Apologies for having missed your blog carnival – i was experiencing some strange inability to write coherently (maybe an impairment-related thing, maybe not, i’m not 100% sure) for the last few days. I think i may have broken out of it enough to be able to write something tonight tho…

    Gratuitous and irrelevant impairment-related question (feel free to not answer – the genetics of impairments is one of my perseverations) – i had been under the impression that only males could get MD. Is that not true then?

  6. Kay

    i had been under the impression that only males could get MD. Is that not true then?

    That’s true of Duchennes MD, not all the other varieties and related conditions.

  7. Pingback: JMBzine » Blog Archive » It’s time for Jerry Lewis to retire, and it’s time to retire the telethon

  8. gcswblog

    How ironic that you had already been on the look-out, and then Jerry goes and says “fag” on air. Sad… sad… sad.

  9. hey there, I was late with this of course but I have a post up now. great reading in that blogswarm thanks for promoting it! blessings to you!!

  10. Um, your blog ROCKS? I found it through WOC. Can we do a blog link trade? I definitely want to keep reading yours because I am sadly lacking in my knowledge of disability activism.
    i have never really thought of the problematics of drives to “cure” certain disabilities. keep up the good work!

  11. DAVID

    I love your attitude and outlook. You’ve taken acceptance to the next logical step. I’ve learned to accept my “disability” (for lack of a better word) and thought beyond, as you have. So many sites enable the pity party and welcome everyone to the festivities. I will no longer just accept the person I’ve become, but rather, be proud. Not everyone can join this club. Thank you.

  12. Pingback: Protest Pity! « ReunifyGally

  13. I hope you will see this comment if I leave it here — I wanted to be sure you knew this was going on:

    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

  14. Pingback: People with Muscular Dystrophy Protesting Pity « ReunifyGally

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