I met him while I was researching for “When Billy Broke His Head… ,” a documentary. I started going over to Kegan’s to see what the territory looked like when you’d been here a while. He must have been in his early forties back then, had the diving accident when he was 16. Life in a chair had lost its dewy newness for Larry.
KEGAN WITH CAROL
There’s a scene near the beginning that starts with Kegan in bed, and Alfonso, his attendant-caretaker-pal dressing him for the day. Alfonso lifts him, dressed, out of bed, and throws him ka-bam into his chair. Kegan was a big boy, remember. The startlingly loud sound of Kegan hitting that chair is a slap to the audience, telling them again that this isn't the cute-cute, special-special, safe TV image of disability that you're always shown. Larry Kegan gave us that gift. He didn't fake it, as so many people had tried to do; instead he let us shoot him at his most helpless. A lot of people wouldn't have done it; a lot of people did refuse to do it. That sequence where he gave us access to unpretty Larry was the beginning of a beautiful friendship, Louis.
A lot of people haven't chosen to see me as disabled, including family members. The Brain Injury Association calls brain damage "the hidden disability" because it is difficult to see and so few people recognize it. One boyhood chum who doesn't acknowledge my disability said, "I don't think Larry Kegan would think you’re disabled." So I asked Larry if he agreed. Kegan laughed and said, "No, you’re in the club."
"I wouldn’t want to be a quad and breathe on a vent." I looked him dead in the eye.
He looked at me just as seriously and said, "I wouldn’t want to be brain damaged."
Larry and I had learned to trust each other in the sixteen or seventeen years since we'd met both of us fighting it all the way. We talked about disability in the decades that I've been disabled there are only a couple of other people I've been able to be so direct and non-rhetorical with; we talked about sex and relationships plenty raw and private stuff; about art, music, and movies; we both got our masters degrees from the same Speech Communication Department at the University; he had embraced Orthodox Judaism and became a Lubavi(t)cher toward the end of his life and tried to pull me in, but I couldn't make that scene. Larry was a praying Jew; I'm a lox and brisket Jew. For the last few years we'd talk on the phone almost every day, sometimes a couple of times a day. The phone would ring and I'd hear his hello and say, "Who is this?" faking naivete.
"Your BROTHER!!! THIS IS YOUR BROTHER!!!" he’d answer forcefully.
"How ya doin'?" I'd ask.
Often as not he’d come back, "Not as good as you."
Kegan & Martin Keller were trying to market a film script, written from their unpublished book, "Some Get the Chair" (also a song by Kegan and LaFond) and, knowing Kegan, Marty did most of the work. It covers all his accomplishments, the sex resort he started in Mexico for disabled Vietnam Vets that the Willem Defoe character in Born on The Fourth of July is based on, the citrus farm he managed in Florida, the SAR sexual attitude reassessment program for disability required at medical schools across the country that Larry started with Dr. Ted Cole, and Kegan and Dylan as kids.
Geno, recognizing there was an obvious disability bond between Kegan and me, said, "You had that gimp thing." After "When Billy Broke His Head..." I must have passed Larry's test and he gave me solid emotional support and shared himself. He'd have himself driven over to my house and we'd sit in his van drinking Arabic coffee and listening to rock or blues on the cassette player because I'd never been able to afford a ramp into the house. During the summer sometimes we'd sit in my backyard. We were brother gimps. Larry and I both knew what it feels like to be treated as The Other and less than. He'd talk about how when somebody would talk to his attendant or the person who was with him over the top of his head and never look at him, he'd say, "I can't walk, but I can talk." You're not going to explain the invisibility of disability to anyone who hasn't experienced it any more than you're going to "explain" the taste of raw tuna and sour-mash bourbon. Somebody asked Fats Waller to define rhythm. He said, "If you gotta ask what it is, you ain't never gonna know."
At the funeral, Dick Cohn told about being in Mexico with Larry and they were going to some Mayan ruins where no Whites beside archaeologists had ever been. The locals stared at this big guy being carried off the boat in a wheelchair, couldn't believe it. But that was Larry. At a Dylan concert, Geno and some young high school football players "passed" him in his wheelchair over a four-foot-high fence. Like a four-foot fence was gonna stop Kegan.
One time in Mexico, Dick Cohn and Geno stood him up, threw his arms over their shoulders, and just stood there. Kegan's legs shook as three buddies stood around that jungle campfire. He said, "Man. I can't tell you how good this feels." That's how I know he was six feet tall. His friends held him up for as long as they could, the ache in their muscles reminding all three that he couldn't stand, couldn't walk, and any moment it's back in the chair forever. But, the three of them STOOD near the fire shaking their fists at that bully disability.
On the beach in Belize, Dick and Geno bought an old truck tire inner tube, blew it up, and dragged him through the sand to the warm water of the Caribbean. They yanked his arms down through the inner tube, put a snorkel and mask over his face, and floated him out into the clear blue and then just tipped him up like a duck and let him breathe under water as they floated around the bay. He'd grunt when he wanted to surface, the three friends laughing about what a wonderful thing life is.
I hate the inspirational role that anyone with a disability is supposed to fit into. Or the super crip, or any of that. They'll let you be anything but a regular person with a disability. Geno e-mailed me,
Whether you or Larry like it or not, being an inspiration is what he did for us ABs. Showed us that our problems were small compared to what others face straight on and rise above. And helping us to see that we all can help each other.
I did not pity him. "Piss on pity," as they say. I admired him.
Geno points out their song ("Some Get the Chair") which says, "there's all kinds of prisons. All kinds of jails..." The chair was Larry's prison, but it was also his chariot, his freedom. Another of his prisons was his dialysis, that is a machine that he had to be hooked up to every couple of days for hours at a time to filter his own blood.
KEGAN WITH LAFOND
The other side of the coin is that it kept him alive. Problems, disappointments, and disabilities have many sides. If Larry hadn't had his accident and become a quad, and learned what he learned, he would have been a different man, but not the man I knew and loved. "Problems" have gifts in them if you take them.
A lot of times when he was singing he couldn't concentrate on the words because
he wasn't getting enough air or blood or something, and you would think he
was being rude or bored. He used to fall asleep when we were talking at dinner.
One time he was on stage at the Hannukah festival in a packed Union Square in San Francisco, with Sammy Kahn and Country Joe McDonald [Country Joe and the Fish]. There was a huge, mahogany, two-story menorah that Bill Graham had donated to the city, and the Rabbi was in a cherry picker bucket, lighting the candles. Geno looked over. Larry had stopped singing. The plug had fallen out of the hole in his throat; his jaw was moving, but nothing was coming out. Geno reached over and jammed it back in. Kegan didn't miss a beat. People's eyes lit up, and they gasped at what they had just seen.
For 43 years in that chair those wheels kept turning, and he just kept singing what he lived, "... Life is a gift and don't you ever forget. You got to learn how to give before you can get."