I’m down on the snow, and in my first five minutes of skiing, I’ve already slightly sprained my right knee.
“You know,” I told the nice instructor, “I don’t think this is going to work. I just don’t have enough control over my right leg. I sometimes don’t know where it’s going to go even when I’m on solid ground. I have no control over the ball of my foot and little over my thigh, so I can’t keep my foot pointed ahead of me.” I was ready to take off the equipment, go have an Irish coffee, and read.
But she was undaunted. “Okay then, we’ll put you on one ski with outriggers and try downhill.”
I thought she must be remarkably naïve—but then again, she was working with all kinds of handicapped people, all the time. I was interested, but barely, more focused on nursing my newly sprained knee.
“We have lots of guys with only one leg who do this,” she said. She had already interviewed me about what I was able to do, and she knew I swam and had upper body strength—a little, at least. She had also asked me how my balance was (not bad) and if I could stand on the one strong leg (I could).
Okay, she said, good to go. I was still not convinced, but she made it sound like skiing on one leg was a cinch. I agreed to try, hoping these outrigger things were going to be like big pontoons, with me as the canoe.
Ha! If only.
Before we tried the outriggers, we tried me on a walker with skis on it, and over the next day and a half, we found that I could almost get the knack of skiing that way. She had me lean lightly on it, telling me to consider the walker to be “just in case” and coaching me to try to keep my weight on the ball of my strong foot and center my body over it with a bent knee, using primarily my thigh muscle for support. It was a lot to put together, both mentally and physically, but I made some progress.
Finally, we actually went on a ski lift. My instructor had the operator nearly stop the lift so I could learn to lean forward to get off, and then we went down a bunny slope, me with the ski walker. There was one point for a couple of minutes when I actually felt what the attraction of skiing was—that sliding, smooth, gliding, almost speeding feeling (she was behind me, with reins on the walker)—and I laughed. I was enjoying it. Slipping and sliding, indeed!
Then, of course, my determined teacher would not allow me to continue to use the walker (geriatric thrills), even though I was eventually able to get off the lift without slowing it to a virtual halt. Oh, no, we had to conquer the outriggers, too.
Outriggers in skiing terms are ski poles with level handles, rather like canes, but with the handles pointing forward, and little, sawed-off skis at the ends. The skis matriculate somewhat, up and down. You’re not supposed to depend on them; you’re meant to use them only to corner and for emergency balance. But you can use them to “pizza,” as they tell the kiddie students to do with their actual skis on their actual feet—make a V in front of yourself to slow down and stop. You can do this all the way down a hill, in fact, and I was teasingly chastised for doing just that.
By the end of that first ski season I looked somewhat like a normal downhill skier, just with one foot held up next to the other, almost resting on the boot of my strong foot.
But far more important is the fact that Richard and I were a couple from 1993 on, excepting a couple of short breaks. (Oh, and we did sleep together—on a makeshift bed in the base-ment—on the last night of that first ski trip. Couldn’t wait.)
27
—
what people think
Richard was not particularly concerned about me being handicapped while we were dating, until we started getting serious. Then we had conversations about what I could and could not do, and what life for me might be like going forward.
Some members of his family said I had “three strikes” against me: I was older than him (by eleven years). I was of a different and, in their eyes, “opposing Judaism,” religion (they saw Sufism as being more Muslim than I did; Western Sufism has a very universal attitude, respecting all religions, but they did not know that). Lastly, I was handicapped. I would be a burden on him. For these three reasons, and at the request of another family member, Richard’s parents told him they would no longer see us as a couple.
People can’t help their thoughts. They can’t even much help what they do or say, all that being a product of accrued knowledge or stimulus or training. Hopefully with maturity we do develop a chat regulator, learning more by listening than opining. I can’t say I’m there yet.
Often people say things they don’t mean to be unkind, rude, or inconsiderate. As with some racist remarks, comments about handicaps and disabilities can be blurted out either with naïve good intention or without forethought, often stated as “obvious” fact that we crips surely must know or accept.
I’ve had people say, for example, “Oh, you aren’t crippled!” To this I always want to say, “What the heck do you think crippled is?” I don’t usually voice this thought unless I’m speaking to someone I know really well and we have an understanding about my candor. I realize the speaker is trying to be considerate. I guess to some people “crippled” means all gnarled up and basically unable to get out of a wheelchair. I have a paralyzed, deformed foot, a deformed hip, and an atrophied leg that’s two inches shorter than its mate. One doctor has called my limp “horrendous.” That’s crippled.
Crippled means, according to the dictionary, deformed or having the inability to be used normally, to lack considerable strength. The dictionary also says it is a synonym for lame, which it circularly defines as crippled; having at least one limb that cannot be used normally; having a limp. So, I fit the dictionary definitions of crippled or lame, handicapped or disabled.
Now, “lame” unfortunately gets thrown around a lot, as in, “a lame idea.” I’ve probably even said that, and it’s not been unusual for people in my presence to say similar things. I once had an employer—a great gal—who would say things like, “You can’t just be limping along with this work or you’ll be here all night,” or, “I am tired of this place’s policy of hiring the handicapped” (in reference to their hiring anybody who wanted to work there more than people who were trained). When I drew her attention to how freely she threw those metaphors and similes around, she was appalled at herself and apologized. I told her it was okay—that I knew she didn’t mean it to be about me, I was just uncomfortable with those kinds of terms being used to negatively describe something I did. This came out in a three-way meeting with her manager. In the end we all laughed over the faux pas; they were so obvious in their extremity that I could only be amused. The alternative was to be offended. And who wants to live there?
Considering all that, no, I don’t want you to refer to me to my face as crippled or lame. But within the disabled community, I have no problem referring to myself as a “crip”—I’ll use that term with normies sometimes, not to shock them but to make it casual. Within most cultures, it seems to be okay to use slang and nicknames that, thrown around by an outsider, would be a slur. Once, at a relationship seminar in the mid-1980s, the moderator had the cheek to ask me, “How does your boyfriend feel about you being a crip?” I think now that he just wanted to put the disability issue out on the table and get me to think about it, because it was probably an elephant in the room to him. I was shocked at the time and told the guy, a bit defensively, that my boyfriend didn’t care. But I didn’t actually know that; I only hoped it.
If you see yourself in a negative light while reading my experiences and observations, please know I’m letting you off the hook and did so long ago. We’re all human. Or perhaps you’ll be able to say, “I do that, I’m helpful that way.” I came to realize while writing this book that most people who are careless about disabilities are unlikely to read it.
For every person who has let the door slam in my face as I approached on crutches, there’ve been at least half as many who have held the door or apologized for cutting in front of me, standing in my way, or even just being too close to my cane or crutch�
��an apology that sometimes carries a “Please excuse me, I’m sorry you’re disabled” aura. Occasionally I can feel an attitude of, “I have not got time to hold the door for this crip; I’m late.” I find it particularly funny when I stand with my crutches holding the door for someone carrying packages. But I have this hope that it makes an impression of sorts. Someone asked me if this action made me “feel whole.” It simply makes me feel like I’m doing the right thing. Righteous, maybe. I have never felt “un-whole.”
A few people have told me that I am heroic. I have tended to pass this off with an “Uh, yeah, no choice, there,” but I do appreciate having what I navigate daily be seen. Disabled people are treated with far more respect in this century than we were in the twentieth or especially before that, and better in the US than some other countries. We’ve a way to go, especially given what I see with kids, cyber-bullying, and celebrity personalities like President Trump. Still, I find that young people—especially young women—are most frequently the ones who hold the door or apologize for cutting in front of my crutchy path.
All of my life, I have had moments like this one: I’m walking along a sidewalk downtown somewhere, see my reflection, and am stunned to see that I am limping badly. Another handicapped friend says this happens to him too—that he’s surprised to see the difficulty of his walk in mirrors and windows. I want to just ignore it, but I know that many normies cannot. If I am alarmed to see it, after having lived with it all of my life, what must go through their heads? What went through the head of the middle-aged man in an expensive sports car (and haircut) who stared at my polio foot without looking at my face while I walked into the library? While I was waiting for eye contact? I felt like an anomaly, an object, not a human, barely a woman, when he did that.
I’ve also lost count of how many times I’ve turned to see a child behind me trying to mimic my walk. It was always disconcerting in childhood, and of late, simply a reminder, as when you realize toilet paper is stuck to your shoe and trailing along behind you. As I matured, I could finally smile at the pantomime, think, Do I REALLY walk like that? and assess the imitation for accuracy instead of its potentially pointed accusation: “You walk weird.” And those occasions have given me many opportunities to tell children the reason I walk like this, even when their parents were grabbing their arms and telling them, “Stop it! That girl (or woman) is crippled! Don’t make fun of her!” (Often they were not making fun; they were just imitating.)
How the adults respond to their kids is usually worse for me than what the kid is doing. Sometimes the mom apologizes with embarrassment (always a tinge of “sorry you are disabled”) and sometimes she just scurries away with her kid, too embarrassed to look at me. It’s actually more painful to hear someone say, “That woman is crippled,” than it is to see a child imitate me. I’m not sure why; more fodder for therapy. I prefer the eye-contact moms, because then I can say, “It’s okay, don’t worry. Happens all the time with children; they don’t know what is wrong with me.”
I used to tell little kids I had a disease “when I was about your age that caused my leg not to grow, so one of my legs is small and short.” I especially did this if they asked (which, again, mothers will often try to stifle, but I think it’s healthy for a child to show curiosity about differences). A couple of decades ago, I realized that my explanation scared small children, because it made them think that they could get a disease that would deform them as it had me. So I simplified my story to, “One of my legs is shorter than the other.” If the whys ensue and we come to my having polio, I always throw in, “But you won’t get polio, because you have had your vaccinations. They didn’t have vaccinations when I was a little girl.”
If they haven’t had their vaccinations, they can talk to their moms about that. Let the anti-vaxxer mothers deal.
After I put aside the shock and hurt I felt when part of Richard’s family rejected me, I viewed their objection to my handicap as ironic, given that I was far more physically active than he was! At that time, we went dancing frequently and sometimes went for walks (if I could get him away from a computer or TV). I was swimming a lot, and I regularly cooked, shopped, and cleaned house, while his exercise program consisted of skiing two or three times a year and walking from his house to his car and from his car to his office and hiking once a year with friends. Twenty-five years later I am still more physically active than he is, although it is now difficult for me to dance for more than a few minutes at a time. This is due to the increased weakness and back problems my in-laws foresaw, and that I thought would not accost me before my seventies or eighties.
Still, I know people in their fifties who are not handicapped and do far less than I do, or have more back problems. As one of my best friends said to me during Richard’s and my challenged courtship, “We’re all going to be handicapped eventually.” Another friend generously contributed, “Francine, at least people can see what’s wrong with you up front. I have an obnoxious personality, and they don’t see that until they get to know me.”
My father- and mother-in-law accepted me completely once they saw that Richard and I truly were committed to each other, and these days most of the family feels that I am an asset and treats me with great affection, despite my not being able to stand up for as long as the rest of them.
Richard Falk and I, November 22, 1997
(would have been my mother’s 89th birthday if she had lived)
Me skiing on one ski (for the last time), about 1998.
28
—
personal best
For the first several years after I started dating Richard, I went up to the Tahoe Adaptive Ski School and took ski lessons the first day or morning I was there. Then I practiced on my own on the runs, either in the afternoon or the next day. Richard would periodically ski over to see how I was doing and was proud of my perseverance. His kiss hello and good-bye were definitely encouraging. I made one run down an intermediate slope, and it was terrifying. The rest of the time, I went down that same bunny slope, over . . . and over . . . and over. Sometimes I was really exhilarated by it, and many times I fell. Learning to fall is one of the skills of skiing.
I particularly liked the image of being a handicapped skier. Fully capable black diamond skiers told me they thought skiing on one ski was very challenging. I think that they were being more kind than truthful, because I saw a lot of ski instructors skiing on one ski with no poles. Still, it was nice to hear. I was proud to go down those slopes, even when I had to stop myself with the outriggers. I liked that I was a special member of the skiing community, not just up there to hang out with people who might be there to show off their great bodies, blond hair, or expensive ski outfits. I met an extreme challenge and overcame a big fear.
Then, when Richard and I had been married for a year or so, around my sixth season of skiing, I rented a different type of boot—one that came up higher on my calf. My strong leg was rigid in the boot and that prevented me from moving my knee appropriately.
I had a new instructor that day, as was true almost every time I went. There were only two with whom I’d had repeat lessons, both of whom were really patient and helpful. The fellow I was assigned for this time was doing little besides repeat the others’ advice: “Keep your knee bent and your toe pointed forward. Keep your weight over the ball of your foot. Don’t use the outriggers unless you have to; use them just for balance in a turn when you traverse the hill.”
He wasn’t keeping a close eye on me—I think he thought I was not a novice anymore because I’d been up for several seasons—but after a couple of runs, I was still having trouble getting down the mountain in smooth long glides. I fell repeatedly in a short period of time, which was unlike other years, and frustrating.
“I think this boot is too tight on my shin and comes up too high,” I told him. “I feel like I can’t control my leg as well as I usually can.”
“Oh, don’t blame the equipment!” he chided me.
But the falls kept h
appening, and I kept complaining about the boot. Then I fell a few seconds after coming off the lift, and I felt my knee twist in an unusual way—like it had popped out of place or cracked, something bad. The pain was sharp, and I was disappointed that I might not make it down the run. Worse, it was my strong knee. The knee in the leg I depended upon in order to stand and support my limited walking.
“Now, get up and we’ll get down this mountain,” my instructor said, trivializing my pain.
“I think I may have broken my knee,” I said. “I heard it pop.”
He gave a frustrated sigh. “You can do this, even if it hurts a little. Come on, get up.”
I gave it another try, but it is not easy to get up on a slope on skis in the snow when you have a very weak leg, and harder if the strong leg is injured.
“Owwww!” I cried out. “No, it hurts too much. How am I going to get down the hill?” I was almost in tears.
Another ski instructor came by, and mine told him, “She keeps blaming the equipment for her falls!”
The other fellow leaned down to my spot in the snow and said, “Are you hurt?”
“Yes, it’s pretty bad,” I said. “It’s my strong leg; the other one is paralyzed, so I haven’t been able to get up.”
He called the ski patrol to come and rescue me. They lifted me onto a toboggan sled, jarring my hurt knee.
“I’ll go down to the TASS office and tell them what happened, then I’ll meet you over at the medical office,” my instructor said. “I’m sure it’s not broken, though.”
The rescue team pulled me down the hill to the medical facility—a very unpleasant ride because it was hard to keep the leg still, and every time it moved, pain shot through my knee.
The young male medic at the emergency facility did a fairly quick and gentle exam of my leg after we gingerly removed my ski pants and tights.
Not a Poster Child Page 21