25th Annual John Young, M.D. Lecture
June 1, 2001
Thank you! This lecture has been given by so many amazing people, and I can feel them all right here on this platform. It's a little scary, to tell the truth, but I've heard that 90 percent of success is just showing up. I'm here to see if that's really true.
I feel like saying, Craig? Sweetheart? I'm home! And I do feel like I'm home. For a number of reasons, I was hospitalized six times last year, but not at Craig. Except for the last time, just last December. And it was so good to be back here. Craig is what every hospital should be, what they almost never are. Craig is where a total stranger can slide up to your bed and whisper seductively in your ear, “Honey -- dig or suppository?”
You're the only people I know who measure success by the handful! Do you know how refreshing that is? In every other hospital, it's “What's a bowel program? You want me to do ... what?” For those of you who don't work here and haven't a clue what I'm talking about -- why don't you get a life?
I stole the first part of my title from Lionel Terray, who was a famous French mountain climber. He called mountaineering “The Conquest of the Useless.”
I see people with disabilities as engaged in the Conquest of the Ordinary. We find adventure in reaching the unreachable object, in scratching the unscratchable itch, in making the impossible transfer. We find it every time our equipment breaks down or an attendant doesn't show up. Our conquests are ordinary as dirt -- but they are adventures and it helps if we see them that way.
The second half of the title is because I usually think of my life as not one life, but as two lives of more-or-less equal length. In 1968, when I was injured, it saw it as one life over; one life just beginning. One life able bodied; one life disabled. And I made the decision then that one life didn't have much to do with the other. That was a mistake, but it is what I did.
BEFORE THE FALL
On the surface of it, my first life was pretty idyllic. I taught skiing and mountaineering in Jackson Hole, where I'd wanted to live since I was 13 years old. With my wife, I ran a ski lodge and a mountaineering store. I had a budding film career. We had three beautiful children.
But that life was less than idyllic in some ways. I wasn't mature enough for marriage, and my wife and I were divorced, then remarried, then re-divorced. Slow learners. I'm proud to say that my ex-ex wife -- and her husband, two of our children and their spouses, two of our grandchildren and yet another grandchild who we expect to be born next week -- are all here today. Together, we've made divorce look like the best thing since sliced bread.
But my knowledge of disability in 1968? I knew nothing. I was scared to death of it. It was only two nights before my accident that I met my first paraplegic. That was in Aspen and the para was Fay Ward. Fay didn't seem very scary at all but whenever I want to blame someone for my paralysis, I say I caught it from her.
And sure enough, a couple of days later, the helicopter I was filming from crashed. I was airlifted to Aspen, and then to the parking lot of University Hospital, and then I was reborn into life No. 2.
You know what the first mistake of my second life was? We crashed in a Wilderness Area. So after they told me I'd broken my back, they fined me 50 bucks for breaking it in the wrong place.
What's worse, I paid the fine! I should have played the sympathy card.
My second mistake was that I didn't do my rehab at Craig. They did tell me about Craig. They said it was an old firetrap, which in 1968 it was. They said that everybody there was in a wheelchair, and that I'd find it very depressing. And of course I believed them! How could a place like that not be depressing?
Second life, second mistake.
But it was 1968. For this newly minted crip, it was a golden time of hope and idealism. LBJ's War on Poverty was cooking; civil rights were on the front page every day. And can't you hear the music? Grace Slick, John Lennon ... Homer and Jethro. The Chipmunks?
1968 was also horrible. The nation's inner cities caught fire like marshmallows held to a flame. Riots, protests, assassinations; Martin Luther King Jr., Bobby Kennedy. Anger over Vietnam, racial outrage, gay liberation, radical feminism, militant environmentalism -- we couldn't make sense of all our anger, so we blamed the only enemies we could all agree on, the military-industrial complex and our running-dog capitalist parents. Yeah! And male chauvinist pigs.
And dummies that so many of us were, tooling around in our chrome wheelchairs agitating for better parking privileges, we had no idea the civil rights rhetoric had anything to do with us. Disability rights? Never heard of 'em. What would we do with them?
If you listen to the younger readers of our magazine, they think the sixties must have been an appalling time. The dark age of disability. You couldn't travel, go to school, get a job. You couldn't adopt children or live independently. If you listen to some people, you couldn't do squat.
Don't believe it.
Ed Roberts had already started the independent living movement in Berkeley, and its next stop was Denver. Tim Nugent, at the University of Illinois, had already proved that higher education for disabled students was a good idea. Medicare and Medicaid were already in place. So was the Civil Rights Act of '64 and the Architectural Barriers Act of '68, the first law that was based on civil rights for people with disabilities.
Contrary to popular opinion, George Bush the Elder did not invent the curbcut when he signed the ADA in 1990. In '68, downtown Denver's main drag -- 16th Street -- was ramped from end to end. Or at least the street corners were; the alleys in the middle of each block were not. So what was that? Passive-aggressive accessibility?
And in '68 in Denver, even though I wasn't there, there was this place off West Colfax Avenue where John Young and Bob Jackson were changing rehab for people with spinal cord injuries -- along with people like Don and Melba Rugg and Sid Golman and Irene Armitstead and Ed Holden.
The old Craig had once housed people with TB -- “lungers,” John used to call them -- and it may have been the old Craig that John was thinking of when he'd say that we should reserve the word “rehabilitation” for old buildings and prostitutes.
Together, John and Bob were magnets for good press. And whenever The Denver Post or The Rocky Mountain News -- Bob called it “The Rocky Mountain Spotted News” -- whenever the papers ran another reverent article glorifying Craig for its heroic work, Bob would sigh and that cheshire-cat smile would spread across his face. “Ah,” he'd say, “we're the Miracle Workers of the House of Hope.”
In '68, nobody was telling us that we might live a normal life span. So it was easy to believe the prevailing dictum to live fast, die young and leave a beautiful memory. We took that as a license to party hardy, and we did.
A lot of that partying went on at Craig, both on West Colfax and right here in this building. And what went on in the original tunnel to Swedish -- some of you must remember it; it was narrow and dark and twisting, with water and asbestos dripping from the overhead pipes -- I say, what went on in that tunnel was a scandal! I won't say anything actionable, but some of you were there. I know you know.
I was still ignorant of all that in '68. I checked out of University Hospital, 60 days after my accident, and that was the end of my rehab. When I moved into my first apartment on Colorado Boulevard, I didn't know a single para or quad living in Denver. I returned to the world as if nothing had changed.
But everything had changed. Of course it had. Harry Hahn was fond of remarking, “Now they live” -- “they,” meaning people like me. “Now they live, but for what?” It was people with disabilities who had to answer that question, and they did even if they didn't get much help from me. But we all had to find new ways to live our lives.
If necessity is the mother of invention, disability is its grandmother. We invented ways to do all the things that either our bodies couldn't do or that society told us we couldn't do. And it wasn't just people with spinal cord injuries, it was people with all kinds of disabilities; I have to include them all, because what I'm leading up to here is the concept of disability culture.
In this country, there are perhaps 12 thousand of us with spinal cord injuries. I'm not sure that constitutes a culture. But 54 million Americans say they have some kind of disability. That might be a culture.
There are lots of opinions about what disability culture is -- and even if it is and whether or not the concept is constructive. Some people feel it separates us unnecessarily from the dominant culture.
I don't think that's an issue. We're bi-cultural, like all other minorities, and cultures can live within cultures.
Here's my definition of disability culture, but keep in mind that it's only one of several. I think our culture is “the artistic and political expression of people who have one thing in common, and that one thing is that we've all reinvented ourselves.” We have reinvented ourselves.
And isn't reinvention at the heart of disability and of rehab both? You're teaching people when they're teetering on the edge of radical change, at that critical moment when the reinvention starts.
Reinvention and our culture are so basic to both rehab and to disability that I think they should be reflected in everything you teach. And I don't mean just spinal cord culture; I mean the greater culture of all disabled people. Your patients need to know it's out there, that it holds a lot of the answers they'll want after they leave your care.
So, what is culture? Lord Raglan offered one definition: “Culchah,” he said, “is roughly anything we do, and the monkeys don't.” God bless the English. It's cute, not too helpful.
If you look up “culture” in Webster's, one definition is, quote, “the ideas, customs, skills and arts of a people or group, that are transferred, communicated or passed along to succeeding generations.” That's the definition that disability culturists usually have in mind.
But culture can also be defined in laboratory terms. How about, quote, “the growth of cells in a nourishing environment”? Your patients are a collection of cells. Don't you provide the nourishing environment? Don't you help us grow? Culture and rehab are blood relations.
But if the goal is to nourish disability culture, we have to concede some real obstacles.
Our community is thoroughly Balkanized. We're politically fragmented into disability groups, and we often don't speak with one voice.
We're isolated geographically and socially, so until the Internet came along we weren't even talking to one other. The vast majority of us, who are still not on the Internet, still aren't talking.
And unlike more established cultures, we don't have family transmission of values. Disabled children usually aren't born to disabled parents, so we don't have parents with disabilities teaching their children with disabilities the way that Jewish or Black parents teach their culture to their children.
If we're lucky, we have role models, no pun intended. If we're not lucky, we can go through life constantly reinventing the wheel, constantly isolated from our peers.
Some people go so far as to compare disability with ethnicity, or to compare finding our culture with finding our tribal origins. But a culture, to live and propagate, needs its story tellers, its chroniclers. Where's our Chaucer? Where's our James Baldwin, our Betty Frieden?
Where's our history? If we don't know where we came from, how can we know where we're going? A small part of our history has been told, but largely by nondisabled people. It's often their story, not our story.
Steve Brown is the co-founder of the Institute On Disability Culture. He's got his own definition of what that culture is. He says it's “the communal experience of oppression and resilience,” and he means throughout human history. Oppression and resilience -- he feels that's what generates our art, music and literature. Historically, he has a good point, but I think victimization is a pretty hard sell. I don't see it as a primary focus.
Cheryl Marie Wade, a poet, filmmaker and performance artist, has a definition I like better.
"Disability culture," she says, "is disabled people talking about ourselves."
Ourselves, our lives, our times, our truths, our history, our diversity. Our culture. We've patched together our lives after years of disability, and now we're patching together our culture after decades of fragmentation. We've reinvented ourselves personally, and now we're doing it collectively.
We need your help. Newly injured people aren't being reborn into a vacuum; they need to know that. They won't want to belong at first -- you can't really argue that disability is just what they always wanted -- but that changes. Please -- direct your patients to our culture, make them aware of it.
Teach us to fight our isolation. We need to maintain our connections. It's hard for a lot of us to travel to see friends. If we don't go to work every day, we don't see new people. Our working friends are usually free in the evening, but some of us can't socialize then: We fight chronic pain or we don't have transportation or we spend our evenings doing two-hour bowel programs.
Teach us not to go gently. Teach us to fight the loss of every old friend and lover. To call, e-mail, write. To be available. Teach us to observe the occasions, to nourish the memories. A lifetime of relationships is one of life's best rewards; losing them is one of its worst mistakes.
It's not always a simple matter to connect your patients to their culture, but there is one easy way.
Expose them to the disability press. It's one of the few aspects of culture you can hold in your hand.
Here's what one reader wrote after first reading our magazine. (It happened to be ours, but it could have been any of these or several others.) This reader wrote that she'd been disabled since age eight, but was 19 years old before she encountered what she called a “crip” magazine.
“It was intoxicating,” she wrote. “Even the catheter ads were liberating. I had no idea that disability was discussed outside the hospital. I didn't know that disabled people talked to one another, much less organized.”
For her, it was a sudden realization that she belonged to a community of like-minded people. People like her, people who had reinvented themselves from the ground up, people who were talking to one another and making things happen.
THE UNSPEAKABLE THINGS
Encourage us to think for ourselves, but also to think collectively.
Collectively, we have the good sense to know it's destructive when people think we'd be better off dead than disabled. When our well-meaning friends tell us they couldn't handle living as we, in fact, do.
Collectively, we have the good sense to know it's destructive when people fear us; when we allow people to shame us; when we hide from the world; when we comply blindly; when we work against each other politically.
Collectively, we can go beyond shame; we can hurt together, and celebrate together.
Collectively, we can speak the unspeakable. That's a big one. It's really defeating if you think you're the only person on earth who does that to breathe or does that to empty your bladder or does that to make love. When we speak the unspeakable, we can get over our bodies. Our poor, banged-up bodies.
In our September 2000 issue, we ran a cover photo of one of our freelancers, Lorenzo Milam. He was in a hot tub, and he was nude. The cover -- sorry for the censorship -- the cover showed his bare bottom. And the reason we ran it is that we also interviewed him on the subject of aging.
Lorenzo's a polio survivor, 67 years old. We thought the cover was tasteful, and he wasn't entirely naked. He'd put a flower on his butt. One reader wrote to complain -- she called us “Nude Mobility” -- and she was far more concerned about what she called the “mistletoe” on his tush than she was about his nudity. She thought the flower was depraved, which is a pretty interesting notion!
Lorenzo wrote back. He said it wasn't mistletoe at all, but a common pickleweed. He shouldn't have bothered. Pickleweed, evidently, is even more depraved than mistletoe. (That's why I censored the cover shot for you -- I didn't think you could handle the pickleweed.) And Lorenzo's nudity, evidently, is more depraved than, say, this (Evian bottled water ad).
Our mistake, we forgot the bottle of Evian. All we had was that silly pickleweed.
And darn, we forgot the Reeboks.
While most of our readers loved our cover, a few called it, quote, “not suitable for children,” “trash,” “disgusting,” “ignorant,” “an embarrassment.”
Lorenzo felt he had to go on record with what he called “The Nekked Truth.”
“So many of us crips are ashamed of our bodies,” he wrote. “I used to count myself in that number. It all has to do with a society that shows only the perfect and the young, dressed or undressed, on television, in the newspapers, in magazines. And now, as I get closer and closer to the grave, I see this fear of exposure as neither necessary nor good.
“When I volunteered to let my bare backside appear on the cover of New Mobility, it was a statement to the society you and I live in. I welcomed the chance to let myself be seen as I am, with no disguises.”
Isn't that the point of any culture? Not to be naked, but to be nakedly honest. To be who and what we are, and to pass on who and what we are to succeeding generations.
If I can separate nudity from sexuality, our magazine also takes heat for the Sexuality issue we do every February. It's always been a popular issue, but each year it tweaks a few people who feel
it's offensive to put sexuality and disability on the same page. We're supposed to be forever asexual, forever childlike, forever innocent. And God knows, we're way too nice to be interested in sex.
Here's one outraged reader: “Showing a woman in a wheelchair with her clothes off just doesn't cut it!” Here's another: “This was the worst abomination in the history of disability.” That pretty much says it all! Someone else wrote that we should have used plain brown wrappers.
Does that mean that we should shroud ourselves as we have throughout history, or is it that wheelchairs somehow skew the moral balance? Is disability obscene by some archetypal standard, or is the indecency in the eye of the beholder? Who is embarrassed?
In truth, we all are. We shouldn't be embarrassed by our bodies, by our sexuality, but we are. When we collectively speak the unspeakable things, we can get over our embarrassment. Our culture enables us to do that.
I hasten to add that Craig has long been a leader in teaching sexuality as a part of basic rehab. I congratulate you for that; please don't stop now.
And I want you to know about my proudest moment as an editor. It came when a Los Angeles Times reporter wrote this comparison: “Barry Corbet and Larry Flynt have at least three things in common. Both use wheelchairs. Both are in the magazine business. And both have been accused of peddling filth.”
It was a day I wished my mother was still alive to see: Larry Flynt and me -- smut-brothers.
Here's somebody we all know. He or she can do anything and everything better than you can, and do it before breakfast with one hand tied. SuperCrip leaps curbs in a single bound. Always a bang, never a whimper, independent to a fault. SuperCrip needs little and asks for less -- the living proof that people with disabilities need no accommodation.
Think of it. You're wheeling downtown, and you're stuck at a traffic light behind a crowd of people. They're all standing on the curbcut, waiting for the light.
So when the light turns green, you bounce down the curb instead of waiting for the crowd to move so you can use the curbcut. As a recovering SuperCrip, I can't count the number of times I've done that. And every time I did, I convinced a dozen people that curbcuts are a silly indulgence for the weak of will. A waste of taxpayers' money.
That was before I had a power chair and started going around everything from poptop lids to cigarette butts. That's when I finally understood that SuperCrip is a bit of a problem. When paraplegic Mark Wellman climbs Half Dome -- a feat I genuinely admire -- he also persuades thousands of nondisabled people that if we don't climb Half Dome, we must be slackers and whiners.
Craig didn't invent SuperCrip -- I think it was 1950s polio rehab that did that -- but you've turned out your share. I know you've lightened up over the years, recognized that we don't all need to become Paralympians and senators and astronauts, or even porn kings like Larry and me.
I'm hoping that we can now live our ordinary lives and have our ordinary adventures without having to measure up to some norm that rehab imposes. Or that we ourselves impose.
Teach us to reach for the moon if that's what we want to do. And to do whatever else makes sense to us -- and not what doesn't. I'm hoping you can help us find the middle ground between SuperCrip and poster child, between admiration and pity.
And I hope you'll teach us to be tolerant when adoring blue-haired ladies smile at us in elevators. And if they lay a hand on our heads, I hope you'll teach us to break their legs.
The flip side of SuperCrip is our tendency to blame discrimination for everything that's not right with our lives. Don't let us get away with that. Yes, our country has a long history of discrimination, but blaming our quality of life solely on discrimination is like blaming a rotten haircut solely on the influence of Marge Simpson.
We should know about discrimination, but we don't have to make it a lifestyle.
MONEY AND LUCK
People often ask what the worst thing about disability is. We won't all agree, but I think most of us would say that one of the really tough things is the pandemic poverty in our community.
Disability is expensive. Expensive lifestyles are usually reserved for the rich. But disabled people, on average, are dirt poor. How do you make sense of that?
Many of us have no choice but to live on SSI or SSDI, which means poverty. Many of us spend a huge part of our incomes on our health care, which means poverty. Some of us buck our wretched unemployment rate -- about 80 percent -- but that can also mean poverty. The price we pay for a paycheck might be our health and attendant-care benefits.
And how do quads earn enough to live on, and also pay their attendants? They have to earn twice as much as I do to have the same standard of living.
Of all American minorities, people with disabilities are the poorest. Repeated Harris polls since the '80s have told us that. We have less education, less employment, less opportunity, less social contact, less recreation, less entertainment; less of virtually all material things. Even the best among us can't always change that.
What about the haves and have nots in our community?
We don't always like to admit it, but many of our haves did not pull themselves up by their bootstraps, and many of our have nots did not drop the ball. Some did and some have, but the generalization holds.
The truth? Some of us are lucky. Some, like me, had jobs to return to. Some have liability settlements. Some are vets with medical care and a stipend for life. They're better off than the
average SSI recipient, but not so well-off as the service-connected vets, who are not so well-off as Bill Gates but they're working on it.
People with good private insurance seem to be luckier than those with Medicare or Medicaid; people injured on the job are luckier than those who get hurt at play. People who get rehab at Craig are exceedingly lucky. So are people with college educations, supportive families and positive role models. And if you live in a state with a good attendant services program, you've taken the Grand Prize.
There are built-in ironies. Some of our very poorest members have insurance that pays for the most expensive equipment, yet some who are self-employed remain uninsured, pay outrageous rates because of our pre-existing conditions, or get stuck with HMOs that dump us onto Medicare at the first opportunity. Many suffer at the hands of managed care, which is often mismanaged care.
It's a painful fact that many of us will never buy a new van with all the trimmings, will never live in a fully accessible home, will never own a state-of-the-art computer and will never take a barrier-free cruise to Alaska. It's a painful fact that to be disabled is very often to be impoverished.
I am, I say, one of the lucky ones. If I have to ask myself the secret of whatever success I've enjoyed, there's no other answer. I've been lucky. So many people haven't. For so many of us, equal opportunity is still a pipe dream, not even a glint in their eye.
So what can we do about it? I think most of you know the laundry list. Universal health care. An end to work disincentives. An end to the Supreme Court's recent erosion of the ADA. An end to the Medicare Homebound Rule, so our homes don't become virtual prisons. The passage of MiCASSA, the Medicaid Community Attendant Services and Supports Act, so we can end Medicaid's bias toward nursing homes.
Your patients should know about these things. They should know the difference between charity and civil rights. Charity serves at the pleasure of the giver. That's why we don't like the President's emphasis on faith-based initiatives. Civil rights are what we have; what I have, you have, everyone has.
You don't have to go to the trenches for us, but do understand that civil rights laws protect you as much as they protect your patients. Inform yourselves. Make sure that you know, and they know, what their rights are, what the issues are. They'll need to know.
OUR IMPERFECT PARADISE
Shall we talk about hell? (If you can't read the caption, it says “Just when I thought things couldn't get any worse.”)
Picture this. It's five in the morning. Your attendant hasn't shown up. You call your back-up, and then another, and somebody very grumpy finally arrives. With help, you get out of bed, get fed, get dressed for work. Then the lift on your van breaks down. You arrange alternative transport and get to work only two hours late.
Then your damn legbag explodes.
Let's talk about this terrible thing that has happened to us; this affliction, this unmitigated tragedy.
How could life be so fickle that just when it shows us its glory, it's plucked from us? Just when you're going to grab the brass ring, you fall off the merry-go-round. The status quo is gone. Paradise is lost. Help me out here, I'm trying to milk this. I tell you, it's a tear jerker.
Maybe the status quo is overrated. And maybe paradise isn't something you lose, but something you learn how to recognize in ordinary life. And certainly paradise isn't something permanent. If it doesn't change, it isn't life and it isn't paradise. Why is a sunset so incredible? It's because it's so ephemeral. You know it's already a goner.
Phil Simmons talks a lot about paradise. Phil has ALS, Lou Gehrig's disease, and you're all aware of the prognosis. He knows his life is uncertain. But he says having his mortality and vulnerability -- what he calls his imperfection -- having that held up to him day after day isn't all bad. He says it gives him a different perspective on paradise.
“The imperfect,” he says, “IS our paradise.” Not the perfect; the imperfect.
I like this idea. Don't we get tired of cold perfection? It's boring. How long can we listen to our favorite music or eat our favorite food without jonesing for something else?
Phil describes the beauty of a New Hampshire spring after a long New England winter -- and how just as spring spreads its warmth, just as perfection is around the next bend, the bugs arrive. In biting swarms, in swarming misery.
“Only during bug season,” he says, “does your skin feel fully alive.”
“Would we recognize the embrace of soft spring without the hard bite of winter?” he asks. “Would spring be so sweet without knowing the bugs are on the way?”
The imperfect is our paradise. No freezing winter, no paradise. No bugs, no paradise. No hell, no paradise. No imperfection, no paradise. No exploding legbag, no paradise.
As one of my family's elders used to say, “Don't rehearse the future.” We can't know what's ultimately good or bad, or what leads to hell and what leads to paradise. Life is fundamentally unpredictable. Everything that happens is interconnected in ways we can't possibly know, can't possibly forecast, leading to events we can't possibly imagine. Life is absolutely and forever ... unimaginable.
Phil wants us to see that everything -- both the sublime and the sordid -- it's all divine. Your most improbable victories and that mortifying involuntary you had at your sister's wedding, all the unimaginable events in our lives -- they're all sacred. They're all life.
I don't mean to trivialize disability. It's hard. It's like a bomb going off your life.
But we need to find a space in ourselves where none of that matters. Not denial, not a place where we're hiding from the world and ourselves and our pain, but a place that grows and heals and projects to others.
I don't call it a place of acceptance. Phil does, but I don't feel I can say that yet. I'm still not sure I've accepted my disability. Paralysis is still an ultimate bummer. I wrote in “Options” in 1980 that I'd rather kick my wheelchair than look at it, and I still feel that way. Acceptance is easier to talk about than it is to practice.
What works better for me is the idea of detachment. To have a really bad time, and do it consistently, we have to give our own pain something to hang onto. By “pain,” I mean our emotional pain.
Have you ever tried to lift a person who's gone completely limp? There's nothing to grab, no place to get a purchase. I think it's possible to be like that with the pain of having a disability. We don't have to be attached to it.
We have to acknowledge it. But if we don't cooperate with it, it doesn't stick to us as much. Our pain becomes like the weather. It can be filthy rotten and undeniably out there, but it doesn't have to govern our lives.
And here's the very simple point, as I think both Phil Simmons and I see it: When we surrender our beliefs about how life ought to be, we can learn to love it as it is.
Or as Edith Wharton so elegantly put it, “If we weren't trying so hard to be happy, we could all have a pretty good time.”
The imperfect is our paradise. Hold that thought.
After 33 years of SCI, sometimes fighting and sometimes dancing with the grandmother of invention, it seems I should have learned something. But when I ask myself what that is, what come to mind are all the blunders I've made. As Oscar Wilde said, “Experience is simply the name we give our mistakes.”
You already know about some of mine.
I crashed in a Wilderness Area.
I didn't get my rehab at Craig.
I was slow, terribly slow, to embrace my disabled peers. Too much like looking in the mirror.
That's such a mistake. We don't all have to reinvent the wheel, even if we do have to reinvent ourselves. You're our teachers. Don't let us do that. Help us make connections to our culture and community.
Another mistake was this dumb division of my life into two separate lives. To a large degree, I rejected what I was calling my first life. I didn't maintain a lot of my best friendships. I dropped my old interests. I didn't exactly withdraw from life, but I did start over. I'll always be poorer for that.
With the benefit of hindsight, it's easy to see that there is no first life, no second life. There's this life, and it's everything we ever hoped for. It's the brass ring we thought we had missed, the imperfect paradise we thought we'd lost.
I just can't tell you how very imperfect it is, or how very tired I get of being disabled. Of all the crap that comes with it, of the constant financial drain. I can't tell you how much I wish I could take a vacation from all of that.
But none of that matters. In spite of all the change and difficulty, life doesn't change. Life is still complete and terrifying and drop-dead gorgeous, and I have just as big a piece of it as anyone else.
Like most of your patients, I once took some convincing that this paralysis thing was going to work. But something changes somewhere in the journey. Disability still saturates our lives -- we live it and we breathe it, constantly -- but in a larger sense, it becomes irrelevant.
To steal a line from my friend Hugh Gallagher, we learn not to confuse our quality of life with the quality of our tennis game.
We learn to identify with the immensity of life instead of the minutiae.
We learn that real life -- everyday life, ordinary life -- doesn't care about the particulars of how we live it. It just keeps flowing and happening, with all its richness and power and beauty. We get the whole ball of wax, with or without a disability.
Like it or not, we are stalked by our everyday adventures, our ordinary conquests. Teach us to embrace them, to value them. Teach us that there's no escaping the greatest adventure of them all -- being part and parcel of the solar wind and the play of starlight, of the pull of tides and the convergence of hearts -- this luminous life that is denied to no one. Not even gimps.