Not a Poster Child

by Francine Falk-Allen

  The first time this happened to me, I went to the restroom a bit later and took a really good look at myself in the mirror. I thought I looked a little tired, perhaps, but I certainly did not look elderly; it must be the cane. Of course, one must remember that to teenagers and people in their twenties, it may be that everyone looks old . . . but the cane certainly adds to that. I limped worse without it, but was not assumed to be old, just deformed or in pain. When I picked up my first cane at a flea market, I thought it was so hip looking—a little old tree branch with an antler handle—that it might enhance my appearance more than it aged me. I don’t know how long I was under that delusion, but it was pleasant while it lasted.

  When I was in my forties, I saw that being handicapped means people consider you “less than.” I had not fully realized before then that I was part of a minority group—one toward which there was a substantial amount of discrimination.

  Not long ago, I attended a concert at a big arena—a big deal for me, as the steep, scary steps are always hard to manage with my crutches. Maneuvering into a row is yet another challenge. I usually need whomever goes with me to spot me in case I lose my balance.

  The headliner that evening (The Dixie Chicks!) eventually came on, and when they did, about a quarter of the people in the arena stood up in excitement. I stood up for a minute as well, but even standing I couldn’t see the stage and could barely even see the jumbo screen. It reminded me of the scene in The Polar Express where the kid who wants to but does not quite believe in Santa can’t see him for the crowd of elves in front of him; he can only see St. Nick’s shadow.

  Well, surely they won’t all stand for long, I thought, and sat down to wait.

  But several minutes later, no one in front of us was beginning to sit down—so finally, in frustration, I tapped one of the two young women in front of me on the shoulder and said, “Would you please sit down?”

  The two women were also short and couldn’t see as much if they sat, but I anticipated a slow domino effect: they’d ask the people blocking the view in front of them to sit as well, and so on.

  “Look behind you,” one of them said. “Everyone is standing up; just stand up.”

  I shouted back over the high volume, “I can’t; I have a paralyzed leg.” It also wasn’t true that everyone was standing; some people behind us were as irritated as I was that the throng had stayed up for so long.

  The young woman and her friend did try to accommodate me briefly; they tried sitting down. But they didn’t ask anyone else to sit down, so they, like me, could only see the jumbo screen in bits. For about a minute they sort of half-stood and crouched—but then they gave up and stood.

  We’d paid a lot for these seats. I could have stayed home and listened to the CD, I thought. Is this how this concert is going to play out, sitting here behind a wall of people?

  I found it incredible that people would block others’ view for more than a moment. When I saw the Stones and all those hot groups in the sixties, maybe we’d stand up and dance for a minute when they played a song that was irresistible, but to stand and block others’ view for a long period of time at a seated concert was rare. If we wanted to dance or stand, we got floor seats and danced in the aisle.

  Finally, after a couple of songs were sung, some people began to sit, and I could see the stage again.

  After the concert, on our way to the car, my companion expressed irritation with me.

  “You were being selfish and inappropriate,” she said. “You should have apologized to those girls. You should have just lived with it. Did you see how they were trying to crouch and were so uncomfortable? You played the crip card! It was okay for you to ask, but when no one else sat down, it was inconsiderate and not compassionate for you to let them try to accommodate you. Especially without an apology!”

  I heard that—but I’m not sure I would have done anything differently in that situation. What I’d do next time is get seats on the aisle nearest the stage or see if there were ADA seats available (although usually those are for a wheelchair with a companion, not a person who wants an actual seat), or just not go.

  Internet research on my friend’s part found that “concert etiquette” has people in 50/50 camps, the polite “you should sit” group and the (I’m guessing) libertarian “you should be able to do whatever you want” crowd. The point being that I can’t expect people to accommodate me, that I have to deal with my condition on my own—something that is not news to me.

  I felt that I had not been 100 percent honest with the two girls, because I can stand, I just can’t stand there for fifteen minutes or more like most everyone else can, especially with nothing to hold on to, to steady myself. I actually would have liked to stand up once or twice and shake my booty around a bit later in the set, but I felt I couldn’t do that after telling the girls I had a paralyzed leg. I didn’t think they were going to want to have a long, shouted-over-the-loud-music conversation about it with this older woman. They were, appropriately, into the concert, and not interested in having a conversation with cranky old me.

  On the other hand, if I looked to be in my eighties instead of my fifties, I suspect they might have been more accommodating. Poor old lady. But maybe not.

  I wish it had turned out differently, and that all of us had gotten what we wanted, which was to see the whole concert.

  So, there’s another example of “you should not expect that you get to do everything everyone else does,” and also one of assuming that disabled people should always be nice and concurrently not put anyone else out. Well, it’s true, “Human life is conditioned and unfree,” as the I Ching says. So, there you are, I have warts, as do those people who are view-blockers. But if we don’t ask, we don’t even have a shot at having our needs met; that, at least, is true for everyone.

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  occasional poster child

  The Sufi spiritual name I was given means “the one who has overcome.” I thought when I was given it, Wow, somebody sees that, just like when my Grandma Allen gave me my world globe and atlas with a card that said, “Happy birthday, little soldier.” When I read that, I knew she saw me—not just for being a polio survivor but for being a crippled kid with no daddy. A bit too much adulthood too soon, and not the aspect that gives you freedom but rather the one that imparts responsibility and a need for strength. So, I appreciate all that. Yes, polio survivors and other disabled people have a certain heroism, all of us. But I would have preferred to be one of the kids on the block.

  When I was in my thirties, one friend said to me, “You aren’t handicapped, Francine, you just limp.”

  I had then, and still have now, various thoughts about that comment. What she meant was that my disability doesn’t keep me from functioning; I simply have a gimpy walk. I’ve had other close friends and new acquaintances tell me they do not think of me as handicapped as well. When I was discussing handicaps about forty-five years ago with a fellow I greatly respected and who knew me fairly well, he said, “You don’t really notice the limp, Francine.” I am guessing this is because people get used to how I walk, just like you get used to someone’s lisp or droopy eyelid or whatever we may have going on. People who think this way are also generous about people’s differences, and not everyone has that nature. These attitudes have helped me feel like a normie. And I have certainly worked hard over the years to be thought of as normal, at least in the range of activities in which I could participate.

  Either I have put on a good show or my peeps just don’t realize how weary a time I have had. Additionally, when I was younger, it was easier. I could climb stairs without holding on to banisters then, though it was difficult. Now I take them one at a time—one foot on the step, then the other, then on to the next step—and I need both the banister and my cane or crutch. Sixty-seven years of limping has worn many parts of me out, and I’m weaker now. Now I get the occasional comment, “You must really be hurtin’ today, kid,” when a friend sees me using my crutches. Sometim
es I am in pain, but usually I’m “only” extremely fatigued and need some physical support.

  Another friend said recently, when she helped me carry my stuff up a stairwell, “I’m so sorry it’s so hard for you. It’s not fair, especially since you’re such a nice person.”

  I didn’t debate the issue of how nice I may or may not be. I did tell her that some people think I am nice because all this happened to me.

  “Those people are mean,” she said.

  I am moved when people acknowledge my struggle without dwelling on it. I also appreciate that people now see that I’m in physical difficulty—but it was always that way, just a little less so. Disability becomes more apparent to people when one uses an assistive device. This is part of why many aging adults resist using them, when in fact they improve function and help to keep our parts from incorrect use or from wearing out earlier.

  One thing that happens to me from time to time is that when someone I know has had a leg or foot injury, they’ll tell me, “I’ve been thinking of you since this happened.” I’ll say, “Yes,” and wait—and often what follows is something along the lines of, “Man, what you must have been through. What you must go through.” To this I might say, “Yeah, it hasn’t been easy,” and ask how they’ve been doing with it all; sometimes I have tips for use of crutches, managing energy, icing, whatever. And I appreciate that they have “gotten” it. Sometimes they then want to know how old I was when I got polio, and I hear or see them silently doing the math. Thirty years of this. Forty years of this. Sixty-seven years of this.

  I’m embarrassed to tell you that I also cannot help but think sometimes in those instances, since I am not a saintly person, I’m surprised you didn’t think of this before; you’ve seen me limping around for thirty years now, at least . . .

  I’d never say that, of course. I take no satisfaction in people feeling bad about not having thought of me in this light before. It just surprises me. It seems to take common experience for most of us to see others’ difficulties.

  I started grappling with physical hardship so early in life that there was hardly a time when I didn’t immediately see it in others. I saw the girl with the deformed arm and knew her limitations, knew that her pretty face might not make up for that arm when the fellows were thinking of whom to date. I notice when people have a limp and can often guess what the problem is. But I probably did a little kicking-the-dog as a kid, too—making fun of the “queer” guy behind his back, for instance. I’m deeply ashamed of that now, and fortunately dropped that prejudice before I was twenty, but I lived in a small town with little diversity, and was raised to be prejudiced in many respects— something I now find ironic, given my own condition. My mother must have been so embarrassed by my crippled body and walk.

  Often when I first meet someone, they will right-out-front say, “Oh, what happened to your hip?” As I mentioned earlier, my deformed hip and pelvis and short leg require me to roll my small hip up so that my foot clears the floor. As I’ve aged, it has become even more apparent that something’s going on there.

  When people find out my walk is a residual from polio, they seem to be sorry they asked. First there is that moment of silence for the polio epidemic, both of us thinking about that; then, sometimes, a naïve person will say, “Oh, well it will get better!” Sometimes I tell them it won’t, and sometimes I just let it go. It makes people feel bad to learn that my condition is permanent.

  Despite the occasional awkwardness, I appreciate when people want to talk about my disability, because I like to inform people about polio and its late effects. This can be a bit of a downer at a party, though, unless the person I’m talking to finds all kinds of life experiences fascinating and/or wants to get to know me. If someone is going to become depressed by discourse on disability, I’d rather we talk about our other interests.

  You have probably determined by now that I am not one of those constantly optimistic people about whom it’s said, “She never complains. I know she’s having a hard time, but you never hear a negative word out of her.” To me that sounds like, “She’s such a sweet old grandma.”

  That’s not me. I do know a few handicapped people like that, and I’ll admit it, I have encouraged them to complain. Not because I want them in my rebellious camp, but because I believe it’s healthy to tell the truth—that sometimes it is overwhelmingly difficult to be paralyzed, in pain, exhausted, nauseous, lightheaded, dizzy, or whatever the condition is, especially when others your own age or who share your general fitness level are able to do much more. I wouldn’t advise anyone to dwell on it and turn it into a litany, but some of the “ladies” I’ve known who are handicapped who seemingly do not complain do it in another way, which borders on being passive-aggressive. They say, for example, “Oh, no, I wouldn’t want to bother anyone,” if you ask if they tried to find a ride to an event they wanted to attend. Brings to mind the old, “I’ll just sit here in the dark . . .”

  Here’s something you might not realize: some of the handicapped people that folks think are so nice and uncomplaining take opioid medication and are a little spacey, so they don’t really care that much about their condition—which is not the same as real optimism, if you ask me. To those who really are in a hell of a lot of pain or exhaustion and truly are happy all the time, I say, accolades. Maybe they’re saints, or maybe they were born insanely happy, or maybe they’ve found the secret to life. (The Dalai Lama says the purpose of life is happiness. And he says that question, “What is the purpose of life?” is easy. The hard question is, “How do you maintain happiness?”)

  I notice that some people aren’t motivated to look at life circumstances deeply, or would prefer not to. Sometimes I think that must be nice; I have never felt I had the choice to Scarlett O’Hara my experience (“I’ll think about that later”). I do practice focusing on the positive, but that’s not the same as pretending the situation isn’t difficult. And no disrespect to the Dalai Lama, whom I believe to be enlightened, but I’m not sure the purpose of life is happiness. I’m not sure life even has a purpose. But I think an aspiration in life can or should be learning how to attain or maintain peace in the face of adversity. And peace does seem to bring happiness!

  Scientific studies have shown that happiness comes directly from low expectations. My husband and I looked at each other with amusement when I read this to him recently. Lowering my expectations has definitely been a challenge for me.

  A common thing I’ve seen in disabled or handicapped people is what lies at the other end of the spectrum from optimism: the resentment and anger that is natural to feel, whether occasionally or as something that comes up so much it wrecks your life. Watch Coming Home, Forrest Gump, or The Sessions for some contrast. Those were all quite believable anger scenarios, in my estimation. For some folks, the anger at being limited physically has become a modus operandi. And I agree with normies who think these folks should try to find something to be happy about.

  I believe that it is more difficult, in some ways, to become handicapped as an adult—which almost everyone will eventually be in some way—than it is to live with it all of your life. We with lifelong disabilities have had year after tedious year to get used to it, whereas if it happens suddenly—if, for instance, a person is made paraplegic after a car accident, has a stroke or a botched operation, or loses a limb in a military injury—he or she has gone from probably being at the peak of physical ability to far less ability than they thought they might have at, say, eighty. It’s almost too tough. And chronic pain makes it even worse. A lot of people who have had these unfortunate events become drug addicts or alcoholics, and honestly, I don’t blame them. I am saddened when they are moved to the point of suicide, of course, but I would never blame them for this choice.

  Disability wears on you, and not only emotionally; it causes your body to wear out faster or requires more maintenance to keep it in shape. It takes a lot of perseverance to keep addressing a handicapped condition. I do not advocate suffering. I o
nly hope that those who are depressed, enraged, or deeply aggrieved by being disabled can pull some motivation out of it, use the minimum medical aids necessary to manage pain, and find some joy somehow. I want that for everyone and feel fortunate that I am nearly overwhelmed by all that beckons me to understanding and study. As Rudyard Kipling wrote, “The world is so full of a number of things, I’m sure we should all be as happy as kings.”

  Some people have used their anger energy well, by channeling it into things like advocating for DP (disabled person) rights or learning to play wheelchair basketball (although that’s mostly for people who have major upper body strength to begin with, and no upper body fatigue issues). A lot of polio survivors have become doctors or lawyers and done great good not only for polio patients but for thousands of disabled and normal people. Me, I was just grousing, so I wrote this book.

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  aging well

  These days, you will find me in a pool almost daily unless rain is pouring or the air or water’s too cold. My pool therapy includes walking, yoga or stretches, arm exercises, core strengthening and stabilizing, kicks while standing and while floating on a “noodle,” and swimming laps. Although water creates resistance and is harder for most people to walk in than on land, it is much easier for me to walk in waist- or midriff-deep water, since the water helps hold me up. This is the only way I can get the benefits of walking; otherwise, it’s a detriment to me, because of the strain it causes in my body.

  We use a solar heater for our pool in warmer months and gas in winter (yes, it’s horribly expensive); polio patients are not supposed to remain in water under 86 degrees Fahrenheit for more than a few minutes due to our circulatory problems. I used to work out all winter, an average of about an hour, four days a week, in temps averaging 52–65 degrees. In the summer, I was doing about seven hours a week. And what with sweeping off the cover, opening it and closing it again, putting on sunscreen or three or four winter water jackets and a ski mask, it’s quite a process. (Richard says I look like a ninja when I wear my mask with my black swim jacket, sunglasses, and a waterproof baseball cap. I thought that when I got out and pulled my robe hood over my head I looked more like the Unabomber, so I’m happy to think I have some ninja in me.)