This entry originally appeared on my disability blog, I hate stairs.
I’m skipping the pleasantries today. Here’s the website: thetroublewithjerry.net. Go look at it now. Seriously, I’ll wait. Just don’t forget to come back!
Back already? I’m not surprised. It doesn’t take long to understand the message: Jerry Lewis is not deserving of a humanitarian award, such as the one he was given at the Oscars Sunday.
The Trouble with Jerry campaign presents many quotes from Jerry Lewis himself, which its members claim are bigoted and pitiful. The TWJ supporters claim that Jerry’s fundraising work with MDA, such as the annual telethon, spreads negative stereotypes about people with disabilities.
Many of the quotes they use come from an article Jerry Lewis wrote titled “If I Had Muscular Dystrophy,” that was published in the September 2, 1990 issue of Parade magazine. As the title suggests, Jerry takes a first-person look at the challenges faced by a child with muscular dystrophy.
While I enjoyed the article, I understand where the disability activists are coming from. When Jerry refers to the wheelchair as “that steel imprisonment that long has been deemed the dystrophic child’s plight,” I can understand why somebody might take issue with that. On the other hand, I can see where Jerry is coming from. He’s trying to raise some money to help kids who have a disease that is very often fatal. It may not be the most tactful way to put it, but I can attest that my wheelchair has, at times, felt like a steel imprisonment. As difficult as some might think it to be, it is important to understand the generational gap that exists here. As a young person in college living in a time where technology can help people with disabilities excel further than they ever have been able to before, I have the vigor to succeed. To overcome the obstacles in my path. A positive attitude about my disability and about who I am. Even so, the way Jerry articulates some of the challenges that a young person with muscular dystrophy faces is so real to me that I almost can’t fathom that a person without muscular dystrophy wrote the article. Let’s have a look at some of these.
Let’s start with what, for most of us, is a simple number of tasks just to get into the mainstream of everyday living … like brushing our teeth, taking a shower, cutting our toenails, filing our fingernails, combing our hair, shaving, using makeup. All of that isn’t even the tip of the iceberg. Example: Bathrooms aren’t built in normal homes to accommodate a wheelchair (oh, in some cases people with money will rebuild and makes things easier for the child and themselves). Just getting through the bathroom door isn’t all that’s involved. Space is needed for a chair to turn, or for a child to be carried and dealt with out of the chair. It’s still only the early hours of the day and already I am beginning to feel trapped and suffocated trying to visit that bathroom.
To me, this seems like a fairly accurate description of a typical morning. It takes me several hours to get up and get ready for class in the morning, and by the time I do, I sometimes feel quite tired. Whether it’s trying to get my patient lift into the shower without roughing myself up or getting out of the shower quick enough to keep from freezing to death, the morning routine has its fair share of challenges.
Now it’s time for breakfast. If I live in a one-floor dwelling, it’s not all that tough getting from Point A to Point B. But there are situations where you have to be carried down a flight of stairs with the wheelchair right be hind. Just the indignity of having to be carried (especially when you’re 12 or 13) is devastating. I know that if I don’t use that chair I will be carried … So you learn to live with that, or at least you make every effort to try to feel that “this, too, shall pass.” Although the conscious mind works in many cases, the subconscious mind knows the truth and reacts on it … So the pain never leaves.
One’s first reaction to the language used in this section (e.g., “indignity,” “devastating”) might be to feel that it is condemning to the kid with MD. I don’t get that from this section, though. I think he is touching on several things here. One of them is that people stare and that society puts a stigma on people with disabilities. That’s why having to be carried is an indignity and is devastating. It’s similar to when I am in public and I need to use the restroom. If I’m with my mom than I only have one option: the women’s restroom. There’s just no way mom’s going to go into the men’s restroom and risk seeing something that she doesn’t want to. So I go to the women’s restroom. I usually must travel to the back of the room to get to the wheelchair accessible stall. Past all the little girls who are wondering why I’m in there, past the girls my age who I, by the very nature of being a male, feel the need to impress. It’s like a march of shame. Don’t get me wrong. It’s not like I get really down and out about having to go in the women’s restroom. But it’s not something I like to do, and it definitely doesn’t make me feel dignified.
I think another point that Jerry was getting at, that many might not be aware of here, is the knowledge of the progressiveness of muscular dystrophy. While it’s not the same as having a car accident and suddenly going from being disability-free to being paralyzed from the neck down, muscular dystrophy is similar in some ways. It gives you the knowledge of what it’s like to be able to do some things one moment, and then it strips those abilities away from you. It is a slow continual process. When Jerry says “the subconscious mind knows the truth,” I know what he is talking about. In some ways, I sort of have to forget about my disability — at least the part about it being fatal (People with SMA Type 2 usually live close to a normal lifespan, although it varies. People with SMA Type 1 many times do not make it past the age of two or three.)
In his article, Jerry continues to explain various scenarios that people with muscular dystrophy might face. He’s not trying to reduce them down to a pointless bunch of weaklings with a meaningless existence. He’s simply explaining the challenges of a kid who has muscular dystrophy from a first person point of view. And then we come to this controversial paragraph.
I know the courage it takes to get on the court with other cripples and play wheelchair basketball, but I’m not as fortunate as they are, and I bet I’m in the majority. I’d like to play basketball like normal, healthy, vital, and energetic people. I really don’t want the substitute. I just can’t half-do anything — either it’s all the way, or forget it. That’s a rough way to think in my position. When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things halfway. I just have to learn to try to be good at being a half a person … and get on with my life.
I may be a full human being in my heart and soul, yet I am still half a person, and I know I’ll do well if I keep my priorities in order.
The quote that is the most infamous here and one that is presented by The Trouble With Jerry is “When I sit back and think a little more rationally, I realize my life is half, so I must learn to do things half way. I just have to learn to try to be good at being a half a person… and get on with my life.” I suppose that without any context to help explain the meaning of this quote and a misunderstanding of where Jerry is coming from, it would seem to be a horrible thing to say. So where is Jerry coming from? He is explaining the effects of muscular dystrophy from a first person view. He is not making statements about people with muscular dystrophy from his own point of view. He is not telling them that they are half a person. In fact, in context we can see he also said “I may be a full human being in my heart and soul, yet I am still have a person, and I know I’ll do well if I keep my priorities in order.” Is this a contradiction? No! In context he is talking about someone with muscular dystrophy wanting to play sports. His choice to use the word “cripples” is understandable in the first person. I know people in the disability blogosphere who use this kind of language amongst themselves all the time. In context, he wants to play basketball like anyone else would but he realizes he has to substitute. “I just can’t half-do anything — either it’s all the way, or forget it,” he explains. I know what this feels like.
When I was very young, I played tee ball. The teams were made up of kids with different disabilities and we were all assigned a buddy who would stay by our side and help us play. Though I did enjoy it for the most part, I did realize I was playing a sport for people like me. I knew I wasn’t playing the kind of sport that my friends at school would play. Our games always ended in ties. Basically, everybody got a chance to hit the ball at least twice and go around the bases. Now, I know there are plenty of very competitive sports that people with disabilities play, but I’m commenting on my own experience as a child. I got to the point where I was participating just to be out at the park with my mom, brother, and friends. I wasn’t there for the game because there was really no game. I can understand wanting to either do something or not do it — and not halfway doing it. And that’s when Jerry’s controversial quote makes a lot more sense than first thought. Because I shouldn’t live my life, as a child especially, not playing sports and not having fun because of my disability. I realized that I have limitations (i.e., my life is half) and that I have to do things that are within my limitations (i.e., do things halfway). I have to accept things and have a positive attitude because, if I don’t, I’ll be a frustrated child not having any fun. So I decide to work with my limitations, with my disability, with the progression, and I do it with a determination that perhaps only a naïve child could have (i.e., I learn to be good at being half a person, and I get on with my life). And that’s what makes me a “full human being in my heart and soul.”
Jerry is wrestling with feelings that I know to be all too true. Now I know some of the protesters had muscular dystrophy and this article did not seem to relate to them. I can’t speak for them. But when I read it upon hearing about this controversy, I thought “wow, this guy really does understand.” He has articulated feelings that I know I’ve had before but that I cannot explain in words. So maybe to some it comes off as a pathetic article written by a celebrity who could care less about the rights of people with disabilities. But I think that idea could not be more wrong.
But I always have the feeling in the pit of my stomach that I want to scream out “Help!” Or, “See what has happened to me!” Or, “Is anyone watching?” But those screams are usually muffled by the inner voice that tells me what to do and when, and tells me softly and strongly: “Be still … Hush … Drive quietly … Try to make as few waves as possible.”
I have never really found out why, when someone is dealt a bad hand, they immediately feel inferior and out of touch with the mainstream of life — when in fact we’re more productive, more educated and more apt the excel than most of the fortunate people who are either indifferent of just don’t care. I wish they knew that one day they could find themselves just as I am … a statistic that breathes and lives and hurts and tries to make it through life without bothering too many people along the way.
It looks to me like he does understand. He understands that society places obstacles in our path. He realizes that, in fact, we are capable. Sometimes more capable. Jerry Lewis is a person who understands. And not just that, but he is a person who is doing something about it. No, he’s not a disability rights activist pushing for things like universal access. He is taking a different focus, which is not necessarily wrong. He’s trying to get enough money together to pay for a freaking cure! And I, for one, shout at the top of my lungs (which isn’t very high) “More power to you, Jerry!” I don’t want to get into the whole medical versus social or cure versus no cure debate. I’m just going to state matter-of-factly that if I don’t get a cure, this thing is probably going to kill me. And I don’t think anybody can question my desire for a cure or the possibility that it could actually happen. It is not something unreachable. I’m not putting my life on hold, but that doesn’t mean I’ve forgotten about it altogether.
I know people have their gripes about the Muscular Dystrophy Association, but without it, I would not be the person I am today. Whether it be the Summer camps, the equipment, or the people I’ve met over the years, MDA has had a huge impact on my life.
So am I upset about Jerry Lewis getting a humanitarian award at the Oscars? Of course not. No matter what people are saying about him, he has helped a lot of children and he understands their plight. If that is not a noble endeavor, then what is?
Those are my thoughts about this whole controversy as of now. I will conclude by answering the question that was framed to me once by an attendant of mine. “Who’s your daddy, Blake?”