As a child, I idolized professional athletes. When you grow up in Indiana, it is difficult not to want to be a basketball player, and although I was never as good at basketball as I wished I could be, I loved the game and I loved the players. Probably my favorite player was Bill Russell, center for the Boston Celtics. Skillful, savvy, and just a little bit irreverent, Russell was everything I admired in a player. I used to tune in to the professional basketball games on our fuzzy black-and-white TV and watch tiny avatars of Russell and Wilt Chamberlain at war with each other. Clearly, Chamberlain was the more talented player. But Russell would always win, at least it seemed that way. Although he gave away significant height to the taller Chamberlain, it always looked like Russell got the better when the two went head-to-head.
As I grew older, and especially after I became involved in music, I idolized the great singers. I still love listening to Bubbles, Beverly Sills. Intelligently funny and remarkably talented, this wonderful soprano was great on the talk show circuit and a kick to hear. As a young singer, I couldn’t get enough of Placido Domingo, Luciana Pavarotti, heck I even enjoyed listening to old Richard Tucker records. When I was in high school, I jumped from acid rock to recordings of Stravinsky almost in the blink of an eye, and when I discovered Dietrich Fischer–Dieskau, I thought I had died and gone to heaven. Maybe it was the fact that he had recorded all the Schubert Lieder with the great accompanying pianist Gerald Moore, or maybe it was the fact that he was 6 foot 7. I idolized this guy.
We learn from role models. They inspire us to look inside ourselves for things we may not have realized we could do, and they show us ways to accomplish our inspirations when no other way seems apparent. And this week, I’ve really been thinking about role models, especially role models for dis ease. I probably shouldn’t go here, but I cannot help it. I have watched our media present the story of a young man in the Twin Cities, slammed into the boards during a JV hockey game resulting in a severed spinal cord. I am so saddened by this young man’s new reality, and what I see happening with his story is unfortunate. The Able Bodied Media can handle it if he is a superior young man with disabilities. What isn’t a great story is the everyday hard work helping him to build a life within the remarkable circumstances in which he finds himself. Medical expense is just one part of handling physical impairment. So I ask, where are this young man’s role models? He has joined, not by choice, a whole new group of people. I am hopeful for his medical bills, but I ache for the social, emotional, and physical challenges that face him. There will be all kinds of guidance, but role models will be hard to find.
I’ve joined a whole new demographic, and I realize that there isn’t a lot of discussion about idols and role models with my new peeps. Who do people with physical impairment look to for how to live a life that makes some sense? Our role models are few and far between. I don’t think it can be people like the late Christopher Reeves. He played the “super-crip, let’s find a cure” card one too many times and really did not seem interested in exploring meaningful life within the confines of his physical impairments. It isn’t that I don’t appreciate his work and the research foundation that he started, but the fact is that cure is so specific, and impairment is so manifest in its requirements for getting through the day, that role models are just not that apparent. And I think there are real, unfortunate consequences for this.
A very interesting experience for me is the new acquaintances I have made as I roll through the skyways of Minneapolis. In the past, I don’t think we would have given each other a second look, but now I find myself making eye contact with a whole different group of humanity. There are other rollers. We never speak, but we do make catch a look and there is a knowing smile that we share. And the guys (yes, mostly guys) who used to hit me up with “Hey I’m just in from Chicago on the Greyhound and my girlfriend and kids in the car over there, and if I could just get 20 bucks I could get them back to Chicago…,” instead just say, “how ya doin’ my man?” And the older immigrant gentleman communing with the spirits of his ancestors while walking the skyway around the Convention Center gets a little quiet when I roll up. He actually smiled last Friday when I came up to the door opener on which he was leaning. Then there is my favorite musician—with a face ravaged by alcohol abuse, but the creativity to sing ironically about Tim Pawlenty and Michelle Bachmann. He actually talked with me, making comments about the lack of parenting skills we had both just witnessed.
I have talked in the past about the weird alignments I notice in my own dis ease journey, and this week is no different. Juxtaposed to my experiences in the skyways, is the fact that this week, the great physicist Steven Hawking, turned 70. He is one of the longest-lived persons with ALS that we know, having been diagnosed when he was 21. Now, he has reached the point where he must have round the clock care, for his ability to control any muscles at all is reduced to one muscle in his cheek. He uses this muscle and a laser dot to compose on a computer that speaks for him. It can take 10 minutes to compose a sentence.
I don’t want to be like Stephen Hawking–I really like my marriage for example. But I look to him as I think about where this life of mine is headed. He has managed to write, to research, to communicate, and to offer serious explanations for the way our universe works. All of this has been while managing ALS. I have heard media discussions of him in which his physical infirmities have been used to define him, yet most people, once they get to know his story, refocus on the great thinker that he is.
This is where things get a little confusing. I’ve joined a demographic that has no choice but to deconstruct the images carried in the heads of others. The power wheelchair has become as much a part of me as the color of my skin. And here is where the experience is really weird. This new demographic has less privilege, less consideration, is more vulnerable, and must manage day to day living with great care and planning. Believe me, I know that I am not homeless, or substance addicted, or down on my luck, or communing with my ancestors. Yet I find a real connection, sometimes no more than a glance up and down, with my fellow humans with which I have been sharing the skyway. And we find ourselves needing to deconstruct pity, and misconception, and obtuseness, and even hostility. That doesn’t mean everyone approaches us that way. I am so thankful for the human love and the willingness of my friends and colleagues to allow me to define my space, but really—the fact that many often speak in a loud voice and quite slowly tells me that humans in general really don’t have a clue about dis ease, disability, and impairment as humanness.
So maybe Stephen Hawking offers us at least the beginnings of a role model for living with dis ease. I don’t mean this to be hero worship. That is an immature concept, for all of us know that no human being can live up to the irrational expectations we put on our heroes. We would be better served to learn to admire how in spite of the flaws and foibles of being human, we can still find a way to raise ourselves above our own paltry expectations. What great role modeling that would be!
Happy Birthday Dr. Hawking. Because of you, I imagine myself through my fears, even as dis ease advances. You have shown us a way, a humanity that most would not choose, but that all can admire. It would be great to meet you. We could talk basketball or music or physics. Maybe you’d be up for a roll through the skyways of Minneapolis, perhaps to hear, “How ya doin’ my man?”