A Matter of Dignity

by Andrew Potok

  Posing, passing, comes easily to many of us. As a blind person, I struggled to pass until I could pass no longer, and even when I made the big move to define myself in public, I chose a dog rather than a cane, the appearance of the one being preferable to me than the other. Given the choice, I liked the image. As our instructors at the Seeing Eye were gearing up to match each of us with a dog, a woman who sat next to me dug her fingernails into my arm, anticipating their choice. “If they give me a Lab, I'll die,” she whispered. “I need a shepherd!” she cried aloud to the room full of eager students and trainers. She whispered again to me: “A shepherd you can take to a good restaurant.”

  Recently, I sat in on a talk given by Mark Jeffreys, whose family is a living portrait of disabilities. His father had never walked without prosthetic support because of osteogenesis imperfecta, a congenital condition commonly known as brittle bone disease, which Mark inherited. Mark's youngest brother Jim was adopted from Korea as a legless orphan, his brother Clark had polio as a child and his brother Peter was born with spina bifida. Only his sister Alice was nondisabled.

  Mark is small and frail, a young professor of English at the University of Alabama in Birmingham, a specialist in lyric poetry. His topic at the conference we were both attending was the cultural construct of disability, and he dealt poignantly with his family's deep need to pass. “After Jim was adopted,” Mark said, “no sooner had my parents completed the medical surveys of the reality of his extraordinariness than they began to think how best to conceal it. The decision of the adults was to make Jim appear as ‘normal’ as possible, and the way to do that was to insist that he always strap on his prosthetic legs.”

  By the time Jim himself got married, he almost never wore the artificial legs. Yet the family's deep desire to create as “normal” a ritual as was humanly possible brought out all the old props. Jim's bride was unusually tall, and her dream of her wedding ritual demanded that her groom not make her look like a giant. If Jim got married in his legs, they could stand together in front of the preacher, just as she had always imagined.

  A portrait taken at another of his family's wedding ceremonies shows a family posed to disguise the ordinary, daily realities of their bodies. “Someone took away Jim's crutches,” Mark said, “so he stands there between us, shoulder to shoulder for balance, suited and propped like FDR for a publicity still. Except for the slightly odd forward lean of his counterbalancing torso, the illusion is perfect: the invisible cripple. Of course if any one of us weakened, the entire house of cards would collapse. Not that Jim's was the only illusion in that photograph, only one of the more successful. The least successful was probably Dad's, who had never walked without prosthetic support in his life. But here, he felt that if he stood still enough, somehow his bodily difference would disappear into the traditional patriarchal role of father of the bride.

  “Oddly enough,” Mark said, “even our ablebodied youngest sister Alice, who was coincidentally recovering from a broken leg, had her crutches taken from her and stands awkwardly, her weight on her good leg.”

  Other families pose with smiles to approximate whatever they believe a “normal” happy family should look like, disguising the frictions of their household. “We did too,” Mark said, “but we also posed to disguise the realities of our bodies. We were used to being stared at, but we understood that if our disabilities were framed, our disabilities would frame us, and we wanted to exclude them so we wouldn't vanish behind them.”

  From early on, at least from the time when medical science had advanced sufficiently that losing a limb was not realistically equivalent to losing one's life, people manufactured crude replacements for lost body parts. Peg legs and hooks were mostly functional, for it was easier to hobble on a peg than be strapped with crutches, easier to gather something in the good hand with a push from the hook. Still, even today, hooks and all kinds of prosthetic devices are associated with crookedness and evil in our literature and media. Even a limp can signify an antihero.

  In the replacement game, the reinstatement of function is often more urgent than aesthetic enhancement. But science and human values are sometimes in conflict. Cochlear implants, a fairly recent surgical technique, are being used to restore hearing, albeit very imperfectly. It's a subject of great controversy in the deaf community: Shocking though it may seem to the hearing, many people who are born deaf don't want to leave the culture of their deafness. They do not consider themselves disabled or as having a tragic infirmity, but as belonging to a cherished linguistic and cultural minority. The medical experts proclaim a great advance, yet the deaf community proclaims a dangerous setback to their interests.

  Attitudes toward the making and the wearing of prosthe-ses are, of course, culture-bound. There was a time when an empty sleeve or trouser leg or a black patch on one eye were badges of courage, while at other times they were marks of emasculation, fear and loathing.

  Replacement hands, feet, arms, breasts and legs, sometimes even penises, make enormous differences in an amputee's life, but some parts are more replaceable than others.

  The actor Christopher Reeve and many others defend their militaristic approach to illness and disability, in which everything is potentially reparable, every wrong can be righted. Indeed, in the medical engineering business, it sometimes does seem that anything is possible. Even in the instance of eyes, scientists are beginning to implant crude chips that restore some primitive vision, hoping for a lot more, hoping for stem cell miracles, hoping to be able to lay down an infmitesimally thin layer of rods and cones and prod it to attach itself to the optic nerve. But waiting for cures for blindness or spinal cord injury or cancer, as many people do, not only instills false hope, a very cruel expectation, but loses sight of the pressing need for civil rights and ongoing care.

  For some of us, “normalcy” stands for a hated average, another name for mediocrity. But it's lonely not to look or act normal. Not many of us are cut out for this kind of separation and aloneness. A great deal is at stake in struggling to be or to remain normal, to be noticed, if at all, only for qualities that reinforce our normalcy. The drive to “fix” disability in any way available is powerful.

  BODIES

  A short time ago, I was walking with my friend Danny toward an outdoor cafe on the Church Street mall in Burlington, Vermont, for a quick lunch. Danny is a rehab assistant and computer specialist who works with blind people. He is an above-the-knee amputee whose usual gait is graceful and easy, but today I notice a pronounced hitch, a tilt to the right with every step.

  “You okay?” I ask.

  “I need a new leg,” he says.

  “Just like that?”

  “There's a lot of wear and tear on these damn things,” he says, smacking the prosthesis and making a thud.

  Apparently, every few years, with the body's natural changes, an amputee's stump gains or loses weight, the muscles tend to atrophy a bit, the connective tissue withers, posture shifts. “All ofthat happened,” Danny says, “that plus the normal corrosion of bushings and axles and hydraulic valves. The socket is slipping. My left leg has to be refitted and remade.”

  Danny had lost that leg the summer of his graduation from high school. After a blowout of a party, dressed in shorts and a T-shirt and going like a bat out of hell on his motorcycle, he lost control turning a corner and hit a van head-on. He spent more than a year out of the next three in the hospital. He had a dozen operations. His other leg was also pretty well smashed and, to this day, it continues to give him trouble.

  A week after our stroll on the mall, we drive down I-89 to New Hampshire, just across the Vermont border, where Dave Loney conducts his prosthetics practice. “This is the third leg Dave will make for me,” Danny says. “I've had some pretty bad legs made by another outfit. With Dave, I know I'm with the best.” Dave and his wife Georgia have restored an old brick factory, an oasis in a sea of car lots, malls and empty lots ready for the coming of Wal-Marts, Home Depots and Staples. Inside, they have carefull
y refmished the hardwood floors and exposed the brushed red brick, then pushed dark old furniture against the walls to make a light, airy, pleasing place to work. “The old arches were so beautiful,” Georgia tells me, “that rather than destroy them when we had to enlarge the openings to conform to Department of Health standards, we dug down into the ground.”

  What they have done with this building restoration, I realize after a while, is what they do with the torn and broken body parts, replacing them as carefully and lovingly as they did the brick facade and arched doorways.

  With Danny hobbling next to us, Tobias pulls me behind Dave and Georgia into a spacious examining room. Danny removes his prosthesis, leans it against a wall and hops over to a platform, where he stands on his good leg, his hands holding a railing in front of him. On Danny's previous visit Dave had made an initial cloth and plaster cast, which he now brings over to me to examine. Its walls are thin, even and durable, its topography a replica of the contours of my friend's residual limb. “It's just the first in a series,” Dave says. Then, “Want to feel Danny's stump?” he asks.

  My reaction shocks me. After a long pause, I say, “Danny?”

  “Go ahead,” Danny says.

  Before I can take another breath, Dave thrusts my hand deep into the soft flesh of Danny's stump, his hands pushing my fingers farther, toward the bone. He begins explaining how he wants to distribute the weight but I hear next to nothing. “Push harder. Feel it? That's the ischial tuberosity”

  I feel the bone that had been cut by a surgeon several inches above where the knee once was, the truncated end of a human thigh bone inside a smooth, soft sack, the now unmus-cled thigh, once probably trim and firm. “It's like meat stuffed into a sausage skin,” Dave says, a plain enough description, making me wince.

  The intimacy of the act and my unexpected squeamish-ness stupefy me. It feels to me, though not to Danny, like a violation of his privacy, his disability space.

  “Supersensitive, are we?” Danny asks as we drive back north. My feelings toward my friend are changed, the stump, his most private deformity, now shared. As far as I'm concerned, we begin to inhabit a new plane. But speeding back home along the interstate, we talk about anything but the privacy of residual limbs or residual vision. We talk about the Tragically Hip, his favorite rock band, we talk about the New York Yankees.

  On our next visit, Dave takes the cast of Danny's stump upstairs to a workbench, where he changes its shape slightly.

  There is a sweetness in Dave's frequent laughter, as ingenuous as his loping up and down his stairs with manufactured body parts. There is nothing holy about these replacement parts, nothing magical or symbolic or metaphorical. They are skilled workmanlike compensations, like a replaced shock absorber or axle or strut, as economically machine-tooled as a bushing under the hood of a car intended only to prolong its useful life.

  Though this can't be a totally pain-free experience, Danny's body language tells me that he is comfortable here. He comes down off the platform and sits next to me. He stretches his leg out in front of him, his arms raised above his head as he yawns. This is the place where he knows he'll be well and tenderly cared for, where, after a few rather grueling sessions, he will walk easily and gracefully again, not unlike the role of the Seeing Eye in my own life.

  “The first amputation they did on me after the accident was below the knee,” he says, “and fitting that prosthesis was a misery. I spent more time on crutches than on the new leg. Everything went better from the moment they decided to do an above-the-knee amputation. By then I was reconciled to being an amputee and my prosthesis became totally functional.”

  “It seems not to have taken you long to get over it.”

  “No choice,” he says.

  “What do you mean ‘no choice’? Some people take a lifetime. You should be proud.”

  “Proud?” He gets a little testy. “What were my options, for Christ's sake? You should know that. You either kill yourself or you damn well get on with it. If there's no real choice, it's not bravery.” He jumps up from his chair. “I need a smoke,” he says. “Come out with me.” He hops over to his old, ill-fitting leg, standing in a corner of the room. He puts it in place and, not securing it properly, hobbles outside, Tobias and I following.

  Out by the little brook behind the Loney building, a family of ducks quacks its way downstream. “My whole process led me in the direction of working with disability and the disabled,” Danny says. “That whole progression really turned me on. As a matter of fact, were it not for my accident, my life wouldn't be as rich as it is. People seem more dimensional, more rounded when they have difficulties. There's a lot about it that sucks, sucks to this day, but the absence of a leg is just an inconvenience.”

  Danny's a good one-legged skier and now teaches skiing to blind people. Even though I have no preference for the su-percrip, the inspirational hero, skiing blind or one-legged is a thrill, more sensuous, I think, more freeing, more satisfying to one's sense of adventure than it is to a daredevil two-legged or sighted skier. For blind skiers, hurtling down some icy slope is living life at an intense, crazy edge.

  Dave Loney has another perspective. “As a Canadian,” he says, “I've always laughed at Americans thinking that they can do anything they put their minds to. Well, that isn't true. I loathe that statement. I've learned from my patients that you have to be mostly aware of the abilities that are within your scope. I'm not thrilled when a patient who has lost a leg asks about running a marathon. That indicates to me that they're not accepting the loss. It seems silly. They should concentrate more on other things. Be realistic. Life is short. Rather than saying I can do anything I put my mind to, they should say, Okay, my abilities in this area have changed, so why don't I try to excel here now rather than there?”

  Dave Loney's practice is doing very well. Nine people are working for him, including an orthotics specialist who makes braces and several workshop assistants. Upstairs in the workshop, Rob, the orthotist, and his apprentices, in green surgical garb, labor at a long workbench surrounded by tall windows. The smell of resins, glues and catalysts is pleasant though abrasive, like wood smoke. Plaster dust has left a coat of white on every surface. Plastic-forming equipment is crammed in everywhere, ovens with extremely accurate infrared sensors, heavy-duty sewing machines, vacuum pumps. Next door, in a plaster room, they work on molds, and in a grinding room, they route, drill and sand with their drum sander, consisting of a pair of motorized spinning cylinders. “It's hardly high-tech stuff,” Dave says.

  Dave makes changes to the socket, runs down again to try it on Danny, then watches Danny's every movement with great care. Dave's wife Georgia, an ethereal being, warm and comforting, floats in and out. “She runs this whole operation,” Dave tells me. There is nothing hurried about the work that goes on here. Dave is slow, deliberate, never annoyed. This doesn't feel like medical time.

  “Are you ever squeamish about the wounded bodies you treat?” I ask him.

  “I used to be a bit when I was young,” he says. “What I had you do, touching Dan's stump, had a purpose. I always hand a prosthetic leg to someone who first comes into my place to talk about a prosthesis. They get over any squeamish-ness very quickly. If there is a patient around I ask them to touch the residual limb. Blood is pumping through that limb and they realize that it's a part of a living human body. Children especially adapt very quickly.”

  “I imagine that for some people having your stump touched or even looked at is more complicated than it is for Danny.”

  “If they're finished grieving, they usually don't care. And it gives me a pretty good idea what stage of grieving they're in.”

  For the most part, people who are disabled don't want to give cause for pity, don't tolerate statements like God loves crips or amputees or the blind. “Haven't you come across people who are afraid that they'll disgust someone with their stump?” I ask.

  “Just today I had a woman patient, twelve weeks post-op, who very much wants
her sisters to see her stump but they refused. It shows me that they aren't finished grieving. On the other hand, I just made a leg for a very pretty woman and she definitely doesn't want anyone but me seeing her stump. But then she wouldn't want them to see her varicose veins or her pimples either.”

  Dave makes a plaster cast from the initial mold. Then, in order to best distribute Danny's weight, he works on the cast of Danny's residual limb with rasps and carving knives. From this, he makes a transparent plastic socket called a check or diagnostic socket. With heat, the inexpensive material of this socket is easy to mold and very fragile, thus lending itself admirably to this interim stage, rather than to the final socket that Danny will wear for years. As he modifies the shape of this socket, he doesn't simply try to reflect the surface shape of the stump, but presses it into places where Danny can tolerate more pressure, relieving stress from more sensitive areas like the groin.

  “There are computer methods of doing this but I don't like them much,” Dave tells me. “They work with the cast in three dimensions. They take the cast of the patient's stump, then digitize that cast. They also use lasers to scan the actual physical mass. The computer scan makes a topographical map of the mass, the skin, but not the structural interior. By hand, I can press in, feel the bones, and determine pretty closely where to put the person's weight. You need to do this with your fingers and your sensitivity to the individual patient, rather than rely on a computer grid. To me, this whole process is more art than science, even though all the materials and equipment seem complex.”

  He heats up a half-inch-thick piece of plastic, puts it into a metal frame, then into an oven at 375 degrees. The plastic droops into a bubble. While it is still hot, he flips it onto the plaster cast and a vacuum pump pulls it down, sucking it tight. This gives him a plastic model of the leg, which he glues to a block of wood and mounts on an alignment jig.