My sister Marilyn would be 59 this year. (Yes, she was much older than me. Goes without saying.) By normal human standards, Marilyn led a far less than perfect life. She spent twenty-one of her twenty-six years in a wheelchair, crippled with muscular dystrophy. She had to have others dress her, put her dinner in front of her, and help her perform the most basic bodily functions. Being young, easily grossed out, and selfish, I never wanted to be the one to help Marilyn go to the bathroom. Of course, if I could have her back now, with the wisdom that comes in hindsight, I’d willingly help my sister cut her chicken and wipe her backside. But these realizations usually come too late.
It should have occurred to Marilyn that her life lacked something and, in darker times, I suppose it did. I wonder, now, how she felt about never having the chance to fall in love, never having a sleepover, never wearing a formal dress and corsage for a dance, never running through a field of dandelions. Remember, this was the 60-70’s, when disabled people were not seen and not heard. I wish I had known her in my adulthood to ask these questions and really know her.
But Marilyn didn’t act like she thought her life was less than worthwhile. It was, in fact, Marilyn who taught me never to let anyone say, “You can’t do that.” She fought for her education. She fought for a life of dignity. And in some way, I know it was watching that happen that made me the “never say die” person I have become. In point of fact, I kind of enjoy the challenge of the word “can’t.”
“You can’t get though college with an alcoholic father and no financial support.” Watch me.
“You can’t go to a conservative seminary and a conservative church and be a female pastor.” Who says?
“You can’t succeed with your own disability (mild version of Tourette’s).” Why not?
“You can’t survive the kidney disease that killed half your relatives.” Still here.
Honestly, that doesn’t mean I’m some sort of indestructible amazon (the warrior, not the bookseller). I know it’s all God. I know sometimes stubbornness has its drawbacks. But it’s also part my sister. And on National Celebration of Life Day, she deserves some credit.
Don’t let us become a society that doubts the value of those who are “less than perfect.” We’re all less than perfect. In some, it’s just more visible. And I’ve yet to see a good definition of perfect, anyway, when it comes to a human being. Don’t allow our culture to cheapen the lives of those who are born with disabilities but still teach us so much with their existence. That sounds like I believe their existence is “all about us,” but that’s not what I mean. It’s all about them, and it’s all about God, and we’re just lucky bystanders.
I don’t like to get political here, and I am not putting a stamp of approval on any candidate for office, but I remember hearing that the same group who criticized Sarah Palin for hunting animals also criticized her for not aborting her disabled child. Now, whether you are conservative or liberal, democrat or republican, does that not strike you as a little morally messy?
I’m not here to crusade for a political cause. I’m writing here to crusade for Marilyn, and those like her, who are imperfect people on an imperfect journey. Like all of us. I know that I, for one, would be a lesser person without them.