Look, this one is REAL simple. I took my time in deciding how to approach the Jerry Lewis Labor Day Telethon situation. It pisses me off to no end that my grandfather got roped in to being a part of the local telethon in Toledo, but he knows my feelings on the telethon and Jerry Lewis. I cannot force anyone to stop supporting MDA or the telethon. I can only share my knowledge of the organization from the standpoint of a former patient, former MDA representative (I served as NW Ohio poster child/goodwill ambassador and State of Ohio poster child/goodwill ambassador) and disability rights activist.

I have decided to be a blunt asshole on this issue. I have tried to be nice. I have tried to reason with people. I have tried to be informed, articulate, thoughtful and thought provoking to no avail. No matter how I approach this subject there will always be some who believe those of us with MD who do not kowtow to Jerry Lewis are just a bunch of ungrateful, whiny bitches. Believe what you want. None of you bemoaning about us have any idea what it is like to have MD. Many are parents of young children and MDA is still catering to these children. Therefore, they do not see the side of MDA those of us who have surpassed Jerry’s expectations on living see on a daily basis.

First, let’s get some perspective. I was diagnosed with SMA in 1985 at Toledo Hospital by Dr. Edward Orecchio who was working through the Toledo MDA. I loved Dr. O. I still admire him and Dr. Richard Munk, a man who saved my life when I was 15 years old by performing life-saving spinal fusion surgery on me. These men loved and cared about their patients. This kind of devotion by doctors is not the same for every clinic (i.e. the Flint clinic I visited where I was treated like a lab rat, expected to do tricks, show off my physical dysfunctions and spoken over as though I was not in the room nor capable of speech).

At the time of my diagnosis I had no insurance. My dad was laid off and MDA picked up the cost of the medical services including my muscle biopsy. I am grateful to MDA for that. MDA claims they pay for clinic for those with MD, but lets be honest. They pay for clinic for those without insurance. Truthfully, I do not mind having my insurance pay for doctor’s visits, since I have insurance. What I care about is MDA’s misrepresentation of what they pay for when it comes to clinic. Why can’t MDA just admit they only pay for clinic when the person does not have insurance as opposed to insinuating they always pay for clinic visits?

Second, MDA was a lot different when I was growing up. Oh, MDA…MDA…let me count the ways (in which your organization was different):

1. When MDA said they bought wheelchairs for those with MD, they really did – Last year, all of us with forms of MD received letters saying that MDA would no longer pay for equipment including wheelchairs, braces, walkers, machines needed for breathing and feeding, etc. This was paramount to what MDA did for patients with one of the 40+ diseases covered by MDA and it is a travesty they no longer pay for equipment.

2. Adults were included. Adults were an integral part of summer camp, support groups, etc. When I was a kid I learned I could have a future and go to college thanks to the adults with MD, whom I was able to interact with at camp, telethon and MDA events. Adults were a part of the MDA family. As I aged, adults were first kicked out of camp (age was dropped to 6 to 21). Then last year camp age was dropped from that to 6 to 17. The age just keeps getting lower and lower. Then, adults were no longer welcome at telethon (not that many of us would want to go, but this just shows how adults are treated). A poster child friend of mine was flat out told not to come to the television station because they were moving in a new, younger direction. Adults are treated horribly by MDA. I was ignored at one of my last clinic visits as multiple children were ushered in before me, despite my having a time limit on when my ride would arrive, and an appointment time before many of them (I heard at least two parents tell the receptionist the time of their appointments). Then, I was yelled at when my ride did show up, and the doctor barely had a chance to see me. This is probably because Jerry says we’re all going to die and those of us who live are symbols of his great white lie.

3. MDA offered support. We were a family. Parents had other parents to talk to, and some of us kids hung out together whenever we could. Telethon was a time to meet up with friends we had not seen from camp. With some friends dying and people becoming less involved in MDA, that family atmosphere has all but disappeared. It has not helped that MDA continues to cut offices. Toledo, Flint and Dayton are just three MDA offices I know that have been cut. Nobody seems to realize that firing Lori, a woman who worked for MDA for almost 30 years, was just as devastating to those of us with MD. Lori was a part of the MDA family, and her loss, due to the Toledo clinic shutting down, is felt by all of us who knew her.

Further, it does not help that MDA has recently cut out paying for those of us without wheelchair vans to get to clinic. If you have no transportation, well then I guess you can’t go to clinic. MDA used to pay to ensure those of us with MD could go see doctors who supposedly have specializations with these neuromuscular diseases. Not anymore. I tried to schedule an appointment to Detroit (the last place I went to clinic – Farmington Hills, actually) and was told I had to find my own way there, which was impossible to do.

Third, Jerry Lewis is a jerk. He is. The hateful things he has said about those with disabilities and gay people is just ridiculous. No amount of fundraising can make up for hate speech. Jerry is merely the figurehead for MDA, anyway. I commend the volunteers, often unseen, who do all the hard work for MDA. If Jerry said the things he has said about your children or yourself it would be a different story. I will NEVER be grateful to a man who has:

-kept his career going thanks to this telethon
-calls people with MD half-persons who can only live half-lives, cripples, less than whole, human waterbeds, etc.
-has said he would kill himself if he was diagnosed with MD
-has said that those of us with MD who do not want pity should stay in our houses
-claims we are all going to die and there is no other option for our futures
-calls people fags on the telethon (his producer’s son)
-says we are trapped in the “steel imprisonment” of our wheelchairs
-uses images of pity to raise money and evoke sympathy for the little “cripples” he features on the telethon

Honestly, if anyone else said these kinds of things they would be crucified. What vile, hateful things. To all of the parents out there saying Jerry is not bad, who have kids with MD, he called your kid a cripple. He said your child is not whole merely because they have a muscle disease. He says your children live half lives. From my experience of working with and hanging out with kids with MD, let me say, these are some of the most resilient, brilliant-minded children I have met. They are not HALF persons. They are whole, vibrant, caring, loving, intelligent, thoughtful kids living their lives to the fullest, despite facing physical challenges. That sounds like well-rounded, whole, functioning kids to me!

You would not let any other person say such vile things to your children, so why is it okay for Jerry to do so? Are you so desperate for a cure for your child that you are willing to let someone degrade your child just because they claim to be looking for a cure? I have news for you. There are plenty of other organizations who are funding research for these diseases, like Parent Project Muscular Dystrophy, Families of SMA, and Cure Duchenne. Their research is not being done at the expense of your children and many of these organizations seem to be making greater strides than MDA is, in the research arena.

MDA once was an organization that cared as much for the living patients with MD as it did finding a cure for future generations. Now, MDA has all but forgotten about those of us already living with the disease. For those with young children, MDA is giving you attention because it is profitable. Little kids are cute. I should know. I was downright gorgeous and MDA knew that. They exploited my skills in public speaking and cuteness. Then, when I became an adult, facing the realities of being in a wheelchair, and really, truly needed the support MDA once offered, I was cast out for newer, younger, cuter models. I am not bitter about this. It just hurts to see them do the same thing to other families and other children, who will soon feel the sting of rejection I once felt by MDA, once I became an adult.

I cannot support this current organization nor anything it stands for, and if you are too ignorant to understand the reasons why I cannot do so, then maybe you need to re-read this article, and really let all of the things MDA is doing (or not) and all of the harmful things Jerry Lewis has said really sink in. If you were in my shoes, where would you stand?

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