Not a Poster Child

by Francine Falk-Allen

  My friend the Sufi teacher gently added this: “You need to consider the type of man. Perhaps someone who either doesn’t want to have kids, or would take on more than most fathers would in order to be with you. Or a man who doesn’t care that much about things like walking and sports, or at least is not looking for a woman who could share those things.”

  Tears had come to my eyes, but I knew that this was very helpful advice, if very late in coming. I had always held it that the main problem was how my leg looked and how unattractive my walk was, and that someone, someday, would overlook this. Bob had, and my first boyfriend, and a couple of other guys. Until this moment I had always seen myself as bringing more to a relationship than I took from it, and though this might be true, whatever I had to offer might not make up for what I could not do. I now saw that a man who chose to be with me might be giving up something.

  Some disabled people, especially when young, believe that they will never be able to have a mate because of the limitations of their bodies. My mother seems to have thought this about me, though I was not aware of it till I was mature. I had long thought my inability to get into a life partner relationship was because of other reasons, including the possibility that I might have some awful traits I was not aware of (the cause of a lot of torment and tears) or that it was just serendipity, it simply hadn’t happened (also the cause of a lot of tears). In my thirties, for a couple of years, I did affirmations: “I am now attracting my perfect life partner.” I also did meditations, visualizing myself in a loving relationship; I chanted, using phrases with meanings such as beauty, peace, manifestation and so on; I prayed; and I went to psychics, one of whom said, “I see you beating, beating on the doors of heaven.”

  Yeah, well, I was. It was easy to fall into negative thinking sometimes.

  I read recently that a young fellow with cerebral palsy saw that he was partly the source of his lack of relationship because he had believed for a long time that he would never have one. He feels he bought into a belief of the dismissive part of society: “no one will ever want you.” The young man with CP didn’t want to face rejection, but he saw that everyone in any body fears that, and now he hopes to have a mate and family one day. His physical limitations are much greater than mine, but he has a loving attitude and is a successful professional comic, so I believe his chances are good.

  We can all say that true love conquers all, and for a long time I believed that, but not many people get so caught up in love that all daily life considerations are put aside—and those who decide to throw all reason and caution to the wind may face a life of difficulty.

  So it was sobering advice I received from Vasheest that day, and though it was enlightening, it did not solve my problem of being alone.

  24

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  on the ropes

  I volunteered in the 1980s, when I was in my thirties, as an assistant for the Six-Day, a seminar the old est network (est was short for Erhard Seminars Training and was always written in lower-case letters because it drew attention to the Latin meaning, “is” or “to be”) held in Southern California. It was six days of intellectual and emotional “processing” meant to assist people to confront their fears and celebrate their courage, and included a ropes course where participants swung over canyons, learning to trust. I had heard it was an exhilarating experience, and given I was never going to be able to actually participate in a ropes course, I wanted to assist so I could watch people go through this life-changing program.

  We had weeks of preparation about learning to be the background for others’ experience, to be invisible as a team so the paying participants would have a seamless experience and be able to concentrate on their own needs and insights. We’d be there ten days to serve their seven-day workshop. We were going to do whatever it took to keep a small resort running while the presenters talked, the ropes course instructors led, and we all cheered the participants on. We had to buy particular clothing (including shorts, which had not been in my wardrobe since my teen years, since they exposed the vast difference between my legs; I wore Bermuda socks with them to help hide my skinny calf, though of course it was hot and no one else was wearing Bermuda socks).

  The day before the seminar began, we rode eight hours in a large, limo-style bus from San Francisco to the San Bernardino Mountains. That evening, prior to the arrival of the participants, we had an orientation. During the meeting, we were asked to say what we expected to get out of assisting in the course and what we were looking forward to. When my turn came, I piped up, in front of the hundred or so people in the room, “I am really looking forward to being at the ropes course and watching people confront their fears and get past them. This will be the highlight for me.”

  The leader looked at me. “You’re not going on the ropes course,” he said.

  I stood silent, sure I had either misheard him or he had been misinformed. Then I began to protest: “But that’s the main reason I came.”

  “I’m sorry,” he said, “but you won’t be going on the ropes course.”

  I began to tear up.

  “Someone take her in the back room and process this,” he said.

  I left the room with a young man who took the task. I was beside myself with disappointment; I felt I’d been deceived. All the participants and leaders in my training group knew I was looking forward to the ropes course. Had they not discussed this? This bunch discussed things ad nauseum. How could this misunderstanding have occurred?

  The young fellow who was “processing” me was basically talking to a wall; all I was able to do at that point was calm myself.

  “You will be working in the kitchen, and will also be on a towel folding team,” he said. “But when others in your group go out on the course once during the week, you won’t be going.”

  I returned to the room with my face hot (similar to the middle school bathroom scene twenty years before), feeling humiliated that this had been a foregone conclusion of the directors—that the handicapped woman would not see the key experience we’d all come to see—and no one had thought to tell me.

  The next morning, we went on about our functions, folding towels, doing food prep, with me in numb disappointment, thinking I would not have come, or have done the weeks of preparatory meetings, or bought the shorts, had I known.

  At lunch time I was outside chatting with several people, and the course doctor, who was an athletic, sweet man, approached me.

  “Can I talk to you about what happened in the room last night?”

  I cautiously answered, “Yes . . .” and we stepped away from the group.

  “Are you still upset?” he asked.

  My eyes filled with tears. I could see that he understood my deep disappointment.

  “Francine, you can’t go on the ropes course because handicaps dominate,” he said. “Your handicap would dominate the mountain. Do you understand what I mean?”

  “No, I have no idea what you mean,” I said, trying to regain my composure.

  He quietly explained. “If you go, everyone there will be concerned for you, your safety, and whether you are okay, because you are handicapped. They’ll be worried you might fall or get hurt. The course will be about you instead of the participants.”

  It was as if a curtain had opened on the drama of my own life. I had never, ever seen myself that way. I was so independent, and I handled my own problems—indeed, always expected to handle them, and rarely asked for help, even when I needed it.

  In fact, I felt so powerless about the condition of my leg that the concept of handicaps dominating any situation at first seemed absurd to me. But in hearing the doctor’s gentle explanation, I saw that it was true. I was at this program to be invisible and facilitate others, not to be the center of attention.

  “I’m so sorry that no one told you that you were not going to go on the ropes course,” he said.

  How healing is apology, even when the one saying “I’m sorry” is not at fault. My conversation with this compassion
ate doctor enabled me to remain there on the course with enthusiasm instead of with resentment, anger, and regret.

  I find that there’s an assumption that, as a disabled person, I should not expect some things like activities and access, and that it should also be obvious to me that I should not want these things. It’s rather like the way the wealthy sometimes consider that the poor should lower their expectations and desires. But being limited does not change desire—in fact, I believe that restriction stimulates desire, like dieting might. Resignation does set in, and acceptance calms the spirit. But wanting to do what others can has never completely left me. Everyone’s life has limitations. Most people don’t have as many physical ones, though, or at least don’t expect to have them until they are in their late elder years.

  At the seminar, we were required to attend a short session daily where we paired up in dyads and disclosed to the other assistants any distracting thoughts we had about them. This could range from being attracted to someone to needing to tell someone they’d done something you disapproved of, or anything else that kept us from focusing on the present. In my case, one time I had to tell a young man that his shorts were too short and I had been uneasy with seeing his genitals. (He was embarrassed and wore longer shorts in the future.) The purpose was to keep relationships in the assistants’ team “clean” so that we would function as one being and not let issues build up, whether those issues were romantic leanings or annoyances that took people’s minds off what they were doing.

  For the most part, these dyads were an enjoyable part of the day. You might have thought someone was a jerk on day one, but by day three you’d have seen his other qualities and could laugh about or forget the annoying aspect and really begin to appreciate the dedication of the team.

  In the first dyad, I paired with a woman I didn’t know but felt I had had a nice connection with in passing. She wasn’t on either of my teams. We sat facing each other, with our knees a few inches apart.

  “I’ve enjoyed seeing you around,” I said on my turn, “and I’m interested in getting to know you.”

  On her turn, she said, “I have the thought that you want people to feel sorry for you. That you are sad and that your life must be really difficult and unhappy because of your leg, and you want people’s pity.”

  Once again, shades of the sixth grade. I was really taken aback. We were supposed to just listen and not counter the things people said.

  One person after another told me the things they thought about me with regard to my being handicapped or disabled, not about who I was as a personality or whether I was attractive, or wondering what I did in my life. What they had to get out of the way was my paralyzed leg and the way I walked and who they thought that must make me, and essentially that they wouldn’t want to be me. I was amazed at how much stuff people had going on about handicapped people, and I learned that not only children had a huge amount of bias about disability. It was a prejudice, just like racism or ageism or any other ism.

  Several people told me that they anticipated that I would want them to feel sorry for me. I believe they saw this was very far from my nature after they got to know me, but this was an assumption they had about handicapped people. They had lots of ideas about how I must see the world—that I must be sad, that I must be angry, that I must be this or that. This was projection, I assumed, based on what they thought they would feel if they had a paralyzed leg, and also upon my disappointment the first evening when learning my activities would be limited. And though of course I had experienced these things over and over in my life, they were life assessments that came and went for me, like watching movies: you cry when there is something sad, but then the next scene comes and there’s something to be inspired by or laugh about. I’ve never been one to hide my emotions well, and over time, I’ve learned that many people not only don’t express many emotions, they are not even aware of what they feel. But here I learned that people thought I must feel depressed, needy, wanting more from people emotionally and physically than others wanted—most of the time!

  Wow. What a life view. This was what people who were willing to trust me with these musings thought about my mental and emotional makeup. This was probably what many or most people thought but would never have the courage to tell me.

  The truth was, the most emotionally upsetting aspects of my young life had actually been that my dad had died when I was so young, and that I had thus far not been able to get into and maintain a love relationship that nurtured me. I had been far more sad in my life about not having a husband or life partner than I’d ever been over having a paralyzed leg. My deepest hurt was not my paralysis, it was not sharing my love—a problem any able-bodied person might have.

  I learned so much from these people who needed to unload their concepts about disability in a safe environment. I had to be a little brave to hear it all, especially at first. This, after all, was my ropes course.

  Not long after I came home from the est seminar, a spiritual teacher I was working with responded to a letter I had sent him, and it caught me off-guard. I had told him that I was finally feeling secure in being single and had come to a place of peace about relationships. I felt relaxed about the prospect of eventually meeting someone I’d spend my life with, and if that didn’t happen, I had so much in my life that gave me satisfaction and inspiration. His reply was something like, “Have you thought about what having one side of your body damaged has done to your personality, and how it may have hurt the male and female aspects of your being?”

  I’d expected that he’d be glad to hear my news. After I picked my jaw up off the floor, I thought, Oh, no. Never gave it a thought. Only every day for the last twenty or thirty years.

  So on the one hand, I had people who thought I must feel sorry for myself, and on the other, someone who knew me well (or so I’d thought), and possibly others, who thought I didn’t realize how being handicapped had affected me. How naïve; that’s like asking a cancer patient if they’ve thought about why they got it. For a sensitive or deeply thinking person, these are the first questions that come up: Is there a reason this has happened to me? Have I lived inappropriately? How is it going to change me?

  To his credit, a decade later, the teacher wrote me another letter, more or less out of the blue, after seeing a letter I’d written to someone else, and said he realized he had not really “seen” me, and that he “probably said some really stupid things” to me over the years. Could I forgive him?

  I wrote back and said I’d done that long before. I knew he couldn’t help what he’d thought, but also, forgiveness feels better than holding a grudge.

  25

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  the hazards of walking

  Imagine if every step you took were difficult. If you have a birth defect, a back problem, cerebral palsy, spina bifida, or multiple sclerosis, or have had a serious injury, or are seriously overweight, or have arthritis in your feet, knees or hips, or are older and now have plantar fasciitis, flat feet, or anything similar, you may know what that’s like. But generally speaking, other than experiencing pain from bad shoes or from being on those doggies too long, most people probably don’t consider walking a serious daily problem.

  I’ve always experienced a lot of fatigue. (These days, pain does play a bigger role, though there are some days when I have little or no pain). When I walk barefoot, my polio foot just hangs there and I am required to hike up my hip a bit so my big toe clears the floor. This weak foot just slaps down on the floor, toe first, if I am not wearing my orthotic, putting me at risk of catching my toe—even in shoes—on sidewalk cracks, sculpted or shag carpets, door sills, tree roots (even tiny ones), and so on.

  As I’ve already mentioned, I learned early in life that when I lose my balance, I usually cannot retrieve it. I see others slip and catch themselves; I find this fascinating and almost impossible for me to do. I try to plan ahead: I scope out stairs (which I avoid if possible), stay away from slippery surfaces, and avoid walkways that have a lo
t of trip hazards—because once I trip, most of the time I either go down or must catch myself with or on something, such as a banister or handle or bookshelf, which has been the source of a lot of bruising and wrenching of joints.

  When I slip, my weak leg usually buckles under me, and I’m on the ground before I can react, let alone think. So I’ve landed on my polio foot a number of times and it has been very forgiving, though it has often been injured.

  It is common for me to trip when I’m in a hurry. I try to allow myself sufficient time, but when I fail, I fall. I have sprained both ankles and both knees repeatedly and both wrists a few times, broken both my knees and one foot, torn my Achilles tendon on my polio foot, badly dislocated a toe and broken it in several places (it was sticking out at a forty-five-degree angle from my foot), bruised my coccyx, bruised the bone in my elbow, broken a finger, and cracked a wrist bone. All this in the course of normal activities like shopping, walking into my closet, going to an ecological display, stuff like that—not in extreme sports (other than one skiing mishap where I broke my strong knee).

  When my first husband, Bob, and I were looking for a home to buy, I slipped (wearing cowboy boots, stupid indulgence) on the way down the steep, painted concrete hillside walkway—basically a slide—to the backyard, and I badly sprained my big toe on my little foot.

  “I guess that this must be the place,” I said, “because I won’t be able to look at any more properties.”

  We did buy it, and I wore hiking boots with Vibram soles thereafter to go down that walk.

  Over the years I’ve been told by some well-meaning friends, orthopedists, and my sister that I should wear tennis shoes because they are more stabilizing. Most polio people find that they are really dangerous, however, because they grab surfaces and we end up twisting our ankles or knees. They may sometimes prevent a fall, but so far, they’ve been more detrimental than helpful to me.