Jen ([info]jennylin) wrote,
@ 2008-05-08 11:16:00
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Current mood: curious
Entry tags:event, lunch, mda

Me and MDA
 So somehow this year I have become a member of the MDA. A "Jerry's kid". When I was younger my mother applied to the MDA for me and I was rejected because my disability was undiagnosed. My disability is still technically undiagnosed as of yet (though I know it's definitely not muscular dystrophy or ALS), but either their scope is changed or I just met the right people last month and am now magically a member of the MDA after 30 years. I am really not sure how I feel about that. As a low-level disability activist for much of my life the whole concept of being a "Jerry's kid" is somewhat repugnant, and after 30 years of having a severe disability without an identity or an organization to back me up I feel somewhat like I imagine people who are diagnosed or injured later in life feel when they suddenly have an identity that is different from the identity they have had thus far. However, the MDA does have some very good benefits that would definitely be of use to me, including the ability to meet some local people at their gatherings and events. We just moved to this area about two and half years ago and I still haven't made many local friends or developed much of a local network. I can't say that I am a particularly outgoing person when it comes to being social, but I definitely have a need for community and being social that I often neglect. Last week I got a call from the local MDA office inviting me out to a fundraiser lunch that they were putting on at the local Red Robin. They wanted "us" more involved and so are offering us free lunch. I think I will be brave and go and give them a chance. Maybe they won't make me squeamish. One never knows. I will blog more about it when I get back.



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[info]raevynsilverana
2008-05-08 07:54 pm UTC (link)
I have Spinal Muscular Atrophy and have worked with MDA my entire life. Nearly all my friends have ties to MDA somehow; we're just a huge extended family. They don't give you a membership card that says "Jerry's Kid" on it or anything, we only regard ourselves as Jerry's Kids when we're joking. MDA is a wonderful resource for treatments and equipment, and even better for social gatherings. I can't escape my disability, but I can take an active role in educating others about it. I hope the people involved in MDA in your area are as amazing as the ones in mine and they you can find some sort of comfort and benefits from them.

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[info]francisb
2008-05-08 08:16 pm UTC (link)
Good for you for exploring this. I do find the organization repulsive, as do many of us. But, depending on how it plays
out in your area it could also meet unmet need. Keep us posted.

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[info]raevynsilverana
2008-05-09 01:56 am UTC (link)
Repulsive? I think that's quite a strong word for an organization that promotes independence and well-being for so many people.

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[info]francisb
2008-05-09 02:14 am UTC (link)
Repulsive is a strong term, and one chosen with intention. More damage is done in an hour
of Father Jerry's telethon than could be repaired in half my lifetime. His portrayal of people with disabilities is amongst the most vile I have encountered. I do not find that empowering, I find it repugnant.

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[info]badgerbag
2008-05-09 07:23 am UTC (link)
Well, I am with you in the ambivalence and mixed repugnance for the way they frame disability, and yet still wanting some resources and social group.

Actually I felt much the same way about my local moms' club. The squeamishness was well founded, but on the other hand by noticing the other people at their events who were rolling their eyes and muttering sarcastically, I made some good friends.

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[info]jennylin
2008-05-09 03:08 pm UTC (link)
Actually, that is exactly what I told my friend before I went yesterday! I will just look for the snarky ones in the back. That seems to be the way I meet the people I actually respect. They are the ones who are thinking about and questioning the meaning behind community. I like thinkers, even if they are frustrating at times.;)

Sometimes making good friends is worth a little squeamishness!

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[info]carly7479
2008-05-09 03:40 pm UTC (link)
My disability is not one of the MDs either, but it is one of those they "kinda, sorta" cover. It enabled me to go to camp for ten years (best ten weeks of my life, I still say), and they provided me with my wheelchair. I have a lot of friends in the Portland MDA community... so be sure to tell people you know me!

I know the pity party that is the MDA Telethon bothers a lot of people. What I don't think a lot of those people who are bothered by it realize, is that all the pity and despair isn't necessarily just because MDA's clients are disabled. It's because a great majority of them are dying. Those parents and families are weeping and begging for donations because they know they're going to bury their children. Yes, they could do things differently. They could be more clear about the fact that they're trying to save lives, not just make a few disabled people normal. They do spend a good amount of time showing the positive things they do to help people, as anyone who watches the telethon instead of just badmouthing it will see. But regardless of the approach they take with the telethon, I will always continue to support them, because I've watched friends die far too young, and I don't want to do it again.

Now, I do take issue with some of MDA's newer policies... namely their attempt a couple of years ago to prevent clients from volunteering at camp, and their recent decision to lower the upper age limit for camp from 21 to 17 - for insurance reasons. Never mind that as some campers get older, looking forward to camp year after year is the only thing that keeps them alive. But that's another rant for another day...

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