john's blog 


A Tribute to Doc Watson

It was the summer before my 9th grade year, and my sister and I went to see Doc Watson at the Rehoboth Beach Convention Hall in Delaware. I didn’t know much about him at the time, only that he had a rich baritone voice and played a mean flat-pick guitar. As he came out on stage that night with his son Merle, I noticed that he grasped Merle’s arm as he walked gingerly to his seat. Woah. The dude was blind.


The concert was a stunning blur of talent and playfulness. Early on I had noticed a harmonica holder on stage, but nobody touched it all night long. Until the encore. Merle led his dad back out on stage, and Doc picked up that harmonica holder and did a medley of harp tunes that didn’t end for what seemed like 30 minutes. His lips flew across the harmonica like it was greased with butter, and he wailed and bent notes and brought us all to tears and to our feet. When it was all over, I leaned over to my sister and said, “I want to learn how to play that thing.” A week later, I went to a music store and bought my first harp, a Hohner Marine Band in the key of C.


Doc Watson died yesterday at the age of 89, and I can’t help thinking about that concert back in the summer of ’78. What if I had missed it? What if Doc hadn’t done that encore medley? And what if Doc had never lost his sight? Would he have ever started playing music at all? Would I?


It seems that when he lost his sight at an early age, Doc turned to music. But he was no mediocre musician whose talent got recognized because of the obstacles he had overcome. Rather, he was an astoundingly talented fellow who happened to be blind. Maybe his blindness pushed him to excellence; maybe it had nothing to do with the remarkable successes he attained.


I get frustrated sometimes when the human interest stories in the media focus on all the amazing things a person with a disability can do, like somehow we’re better than other people because of… well, because of what, exactly? Because we choose not to swim in the pool of self-pity? Because it looks from afar like we struggle all the time? Because we’re just getting on with our lives?


Doc, you were an amazingly gifted musician, and I don’t really care whether your blindness had anything to do with it. You inspired me to pick up a harmonica, not because you had a disability too but because your God-given talent got under my skin and gave me an idea. After all these years, it’s clear to me that no, I’ll never play like you. But you know something? I don’t have to. I’ll just keep playing for the love of it and I’ll think of you every time I strap on that harp holder and purse my lips.


throwing away normal

This past winter, my family and I got pulled into the gravitational field of the wildly popular PBS series called Downton Abbey. It's brilliantly done, with lots of parallel story lines woven throughout. One of the story lines involves a butler who almost loses his job because of a war injury that makes him walk with a profound limp. At one point he visits a brace and limb maker (they likely weren't called orthotists back then) and asks for a device to correct how he walks, and he's given this awful, clunky contraption that looks a lot like a leg brace and it's supposed to help his leg grow longer. But it causes him awful pain that he can barely stand, though no one notices because the brace is under his pants.


Finally the secret gets out, and the man is next found standing with leg brace in hand on the dock of a lake. He flings that awful thing through the air and into the water, where it sinks quietly out of sight.


I have fantasies like that. Standing on the edge of water or a cliff and throwing my braces into the abyss. Of course, if I did that I'd be unable to walk, so I'll leave the drama for Masterpiece Theater and keep the fantasies in my head.


But the scene reminded me of 2 memories from childhood. The first was when I was about 8 or 9, and a friend remarked: "You know, when you're in your 40s there will probably be a pill you can take to make you normal." It sounded good to me at the time, until I really started to think it through. What if the pill really did work? I couldn't even think about the pain that might ensure as my hands and feet stretched out to "normal." And wouldn't I have to re-learn everything I had worked so hard to do on my own?


The second memory: I went to a hand surgeon once when I was in 7th grade, and he claimed he could operate on my hands and make them look completely "normal." "Oh, by the way," he mused, almost casual-like. "You'll lose all function in your hands. But that shouldn't matter if they look good." I remember getting really angry at the time. Did he truly believe he was doing me a favor?


The butler in Downton Abbey threw away his brace because he had come to peace with his disability. He decided that living with a limp was far better than living on the false hope of looking "normal" in the eyes of the world. Maybe it's time we throw away the term "normal" into the bottom of the lake as well.





The following piece first appeared on beliefnet in August, 2010:

Back in 1964, I was born with a rare condition called Arthrogryposis Multiplex Congenita. The doctors predicted I'd never live, and if I did live, I'd never walk, and even if I did both those things, I'd certainly not have a normal brain ("mentally retarded" is the term they used). Wrong. Wrong. And wrong again. But I do have this thing called a disability, and let's put it this way: I am not one to blend easily into a crowd.

First, I walk with leg braces that keep my knees straight. So in order to propel myself, I sort of waddle from side to side to put one foot in front of the other. To the untrained or unaccustomed eye, I may look more like a drunk penguin when I walk. Second, my arms are very skinny and straight, and my hands are small and curved under. On the one hand, I can sometimes have an out-of-body experience and imagine that I'm really quite fascinating to look at. On the other, I often times don't think of myself as having a disability at all. Quite frankly, I forget it's there. (After all, when you've lived with something all your life, it becomes, well, normal.) I pay it no mind whatsoever until I see someone staring at me. And then I remember.

I am now in my mid-40s, and it's only been recently that I've come to realize my ambivalence toward the stares of others. I really do understand the temptation to gaze upon that which is so different, especially when those gazes come from the eyes of small children. Kids are, after all, naturally curious, and it makes me crazy when parents scold their kids for staring at me--even as they stare at me themselves. Still, there is a fine line between curiosity and rudeness, and sometimes I just wish people would leave me alone. Maybe today I don't want to think about this disability; maybe today I want to swim in my pool of denial and pretend that things are okay. Maybe today I want you to put away your default to the superficial and see me for who I really am.

A long time ago, back when I was a brash little kid with an attitude, I used to catch people staring at me and I'd do one of two things: I'd stare back at them as intently as they were staring at me. Or, when my confidence was high and the brashness at fever pitch, I'd yell at them. "Hey, take a picture!" I'd shout. "It lasts longer!" It was a sure-fire way to stop the staring, but I'm not so certain it taught anyone a meaningful lesson along the way.

Even my own sisters, who you'd think should know better, are not immune from the staring bug. Once, when the three of us went out for a pizza, a guy came into the restaurant who was clearly visually impaired: he had a cane and a pair of seeing eye dogs (why he had two dogs with him I'll never know). As the evening progressed, I noticed my sisters (my own flesh and blood!) were staring at the guy with the dogs. "You guys," I whispered. "Stop doing that!" The reply was funny, but instructive. "Why?" said one. "He can't tell." First of all, I was sure that he could tell (Intuition? An acute sense of hearing?). But even if he couldn't, that didn't make the staring any less rude. Even so, I did understand my sisters' curiosity. Perhaps it was at that moment that my ambivalence toward the staring was born.

Today I am married and the father of two (non-disabled) children. I know my kids (ages 11 and 13) are acutely aware of the stares of others when we are out together, and I also know that they don't fully understand when I try to give people the benefit of the doubt. Sometimes I cringe when I am with them and they see someone staring at me, and I'm half expecting one of them to start yelling something about taking a picture.

But just last week I was given reason to hope. We were out at the beach on Cape Cod, and as usual I was feeling the stares of others as we made our way from the parking lot to the beach. To make matters worse, I was wearing shorts and so my leg braces were more visible than usual. Then we passed a boy of about 6, walking toward the bath house with his father. "Hey, Dad," said the boy as he looked my way, "Look at that cool guy!" Cool guy? Me?  I can honestly say that I had never heard a kid say such a thing before, and it made me laugh out loud. Come to think of it, I AM cool to look at, and I have a six year-old stranger to thank for reminding me that all who stare are not all rude. Maybe they are just stunned by my coolness.