The Muscular Dystrophy Association has been a part of my life since I was four years old. Since so many people are saying those of us with MD should be grateful to the MDA and to Jerry Lewis, I decided to take them up on that offer and write this list.
1. I’m grateful that the MDA no longer pays for my clinic visits. Instead, they charge my insurance exorbitant amounts of money. They advertise on the telethon that clinic is part of where the money goes, but no longer do they pay. I’m grateful because I no longer attend clinic. I have found my own team of specialists to help deal with my medical needs, which are a part of having the type of MD I do.
2. I’m grateful that MDA has continued to drop the age for camp. Originally, everyone could attend camp regardless of age. In the 90s, MDA shut out adults. In 2009, they will change the age limit from 6-21 to 6-17, to save money. Despite camp being one of the only vacations adults with MD received and despite younger campers learning from adult campers, giving these young campers hope they could have a future (despite many believing they are going to die young, thanks to what Jerry Lewis has said about them), I’m grateful that I can no longer attend camp because I didn’t like the food.
3. I’m grateful that MDA doesn’t buy my equipment. Who knows where they would have scrimped and saved if they were the ones paying for my wheelchair? Instead, my insurance covers 100% of the cost. My insurance buys my Hoyer lift, my bathroom aids, my respiratory equipment and pretty much everything else I need. MDA says they buy equipment, in order to get people to donate. What they don’t say is it’s a relatively small amount ($5000 – not even 1/4 the price of my wheelchair) and it’s given out every 8-10 years. Truthfully, they only give it if your insurance won’t pay and even then, you have to beg.
4. I’m grateful that when my insurance bought me a lemon wheelchair, the MDA shared my private medical information with someone they shouldn’t. That is against the law, but after writing to National MDA to point this out, they tried to give me hush money for a new wheelchair, so I wouldn’t push the issue too much. By then, it was too late and the lemon wheelchair had ruined my legs, causing me to spend considerable amounts of time in bed. Nice to know MDA only is there when they are backed into a corner.
5. I’m grateful that MDA is going in a new direction. Having told many of my adult friends they are no longer welcome at the telethon, because they are too old just shows how much they care about adults with MD. We all know kids invoke more pity anyway and they make more money. Besides, we’re all just proof that Jerry was wrong when he said all of us would die before we became adults.
6. I’m grateful the MDA pimped me out for profit. I served as Goodwill Ambassador for my local area and state. Then I volunteered with my family tirelessly attending thousands of events and raising thousands of dollars. It made it sting just a little bit more when MDA turned their backs on me, once I became an adult and was no longer profitable to them. However, it taught me the true meaning and purpose of the organization. For that, I am grateful.
7. I’m grateful that MDA has kept Jerry Lewis on as its spokesperson. The world needs another bigot dictating how we should treat people in wheelchairs. Everyone knows those of us in wheelchairs deserve pity and we’re half person cripples who should just shoot ourselves in the head and get it over with. That’s what Jerry says we should do, anyway.
8. I’m grateful that Jerry continues to call me his kid. Nevermind the derogatory, paternalistic connotations associated with it. I mean, we are half humans after all and what is more half human than being a kid? I guess you don’t become whole until you are an adult.
9. I’m grateful that the MDA lies on their telethon, not telling people where all their money really goes. They really don’t buy many of us equipment, or if they do, it’s not enough to pay the full amount. They no longer let just anyone with MD go to camp. You aren’t paying for everyone to go to MDA Clinic, because most people have their insurance billed for that. Only a small amount goes to actual research ($15-$20 mil of $200 mil earned last year). There are funds that go to something called “other stuff”. Much of the money actually goes to pay for administrative costs and paying the staff. Almost $400,000 goes to pay the CEO each year and don’t forget it covers the travel costs for Jerry, as he travels in the name of MDA.
10. I’m grateful that MDA has allowed me to meet a group of friends who are fighting for disability equality. Without MDA’s mistreatment towards those of us with Muscular Dystrophy, I don’t think many of us would ever have connected.
[Note: In case you don’t get sarcasm — this article is laced with it]