Chapter Seven

On Her Own Two Feet

The way I respond to a stressful situation is by removing myself from it, by intellectualizing it, by thinking about its long-term implications while refusing to look at what’s right in front of me. That’s how I handled — or, rather, didn’t handle — my parents’ terminal illnesses. In Becky’s case, I decided early on that there was nothing really to be upset about because, after all, she’s going to be fine. I had a firmer grasp on the healthy, intelligent, competent adult I imagined her becoming than I did on the sick, fragile baby who was right in front of me, and who was struggling through an unhappy infancy. Rather than living in the present, I was living in an ideal future of my own design. Fortunately for her, there were others — Barbara especially — who were focused on how she was and what she needed right now rather than which college she should go to and what her career options might be.

Becky’s recovery from the respiratory virus that had landed her in Mass General was slow and fitful, marked by frequent setbacks. Her oxygen-saturation levels were supposed to be at 98 to 99 percent. Often — usually — they were 95, 94, 93. And it was not uncommon for them to fall to 90, 89, 88, especially when she was sleeping. We’d suction excess mucus out of her trach tube, the one aspect of her trach care with which I was intimately involved. (If I hadn’t learned at least that much, I couldn’t even have put her in her carriage and wheeled her around the block.) She couldn’t tell us what it felt like, but given how much she hated it, it must not have been good. Since she was trying to breathe in at the same time that we were vacuuming her tube out, it had to have felt like we were taking her breath away. And we’d do this once, twice, ten times an hour, depending on how congested she was. Her nurses would flip her on her tummy and lightly tap on her back, trying to loosen the secretions in her lungs and airways and get whatever was in there up and out.

Those were dark days, and they were a lot darker for Barbara than for me. I had distractions — more distractions than I could reasonably deal with, but distractions nevertheless. Just a few weeks before Becky got sick, I started teaching a course in feature writing at Boston College. Less than a year before that I’d been promoted to managing editor of the Phoenix. My managers and fellow employees were wonderful during this time, but the unpalatable truth was that I was happier ensconced in my corner of the newsroom than at home or in the hospital, dealing with the needs of a sick baby, an exhausted wife, and a toddler son who was beginning to wonder where he fit in.

Barbara had few such distractions. Thanks to the home nurses that the Kaleigh Mulligan program had agreed to pay for, she was able to continue her two-days-a-week job as a photographer for the Beverly Times. But other than that, all of the hardships and heartaches of balancing the care of a chronically ill baby and a healthy two-year-old fell on her. I don’t mean to exaggerate. The amount of nursing assistance we received was extraordinarily generous, especially during the first six months or so, and because of that Tim was able to get about as much attention as he would have if his little sister had been healthy. But psychologically, emotionally, Barbara was at Becky’s bedside at all times, regardless of where her actual physical location happened to be. It was she who was Becky’s extra nurse, performing most of the suctioning and all of the more advanced aspects of tracheostomy care. It was she who could tell that Becky didn’t look right, didn’t act right, didn’t feel right. My memory is that Becky had her ups and downs during that first year with the trach; Barbara’s memory, which I’m sure is more accurate than mine, is that Becky was sick practically all the time.

We celebrated Becky’s first birthday in her bedroom, a large space on the first floor of our house that we had converted into a virtual hospital ward. The party took place on a stifling afternoon right before Labor Day, one of those airless late-August days when you’re so sick of summer that you just want it to be over with. We cranked up the air conditioner and shut the door; heat and humidity interfered with Becky’s breathing, and that was compounded by the fact that dwarf kids, for some unknown reason, tend to get hot easily. The body heat emanating from the handful of friends and family members who’d gathered in her room didn’t help. Becky was hot, cranky, and tired. She couldn’t quite sit on her own yet, so Barbara had propped her up in her high chair, towels stuffed strategically to keep her from keeling over. At this point, we rarely risked letting her try to breathe on her own, so the translucent blue hose that brought oxygen and moisture to her trach site was firmly in place. We put some cake in front of her, which she promptly smeared all over herself. She smiled a bit, but soon looked miserable. Then we sang “Happy Birthday.” She began crying — bursts of air hissing from her trach tube to signal her distress — and the party was over.

***

Throughout the two years that Becky was sick and encumbered, we were encumbered, too — entangled in the arrogance and incompetence of what might be called the health-care/social-work complex. Our experience wasn’t bad across the board, but it was bad enough that we were sometimes left angry, frustrated, and hurt. The home nurses were universally wonderful; the ones who were with us the longest couldn’t have cared for Becky any better than if she were their own child. But the agency for which they worked often came off as an uncaring bureaucracy whose only interest was the bottom line. Every so often, the manager — a nervous, officious woman who, I’m sure, had her marching orders from her superiors — would come out for a visit, the main purpose of which was to lecture us, to remind us that we were getting a lot of services (as if we didn’t know), and to warn us that eventually we would be expected to meet more of Becky’s nursing needs ourselves. It sounded reasonable, I suppose, but only if you assume that the things we were using the nursing shifts for — sleeping and making a living — were unnecessary frivolities.

Once Becky’s case had settled into a routine, we had an overnight nurse seven days a week, and a day nurse on Mondays and Tuesdays. Without the day nurse, Barbara would have had to quit her job. Without the night nurse, one of us would have had to stay up all night, loosening the phlegm, suctioning the trach tube, listening for the alarm whenever her oxygen sats dipped into the low 90s — as, indeed, we (well, okay, Barbara) did whenever the agency was unable to line up a night nurse, a not-uncommon occurrence, especially on weekends.

Then there was the medical-supply company. I will never forget pacing back and forth between Becky’s room and the phone one day, her oxygen tank nearly empty, calling every fifteen minutes to find out where the hell they were with their delivery.

We were unusually lucky in one respect. Our HMO, which managed Becky’s case even though Kaleigh Mulligan was paying most of the bills, actually viewed patient advocacy as one of its missions, and it went after the supply company with admirable ferocity. I recently ran across a pathetically defensive, self-serving letter that a manager at the supply company had written to our insurer. She blamed it all on the nursing agency. No doubt she was at least partly right, given the nursing agency’s shortcomings. But just rereading her letter served as a reminder of all that went wrong: a broken liquid-oxygen system; a dead battery in the portable suction machine; problems with finding an oximeter probe that would fit around Becky’s unusually small toes; the company’s reluctance to supply us with more than two probes a month, even though Becky was using more than that. “I have gone to the effort of reviewing the history of this patient because my name is attached to alleged statements and performance,” the letter continued, all misplaced wounded feelings. “I take a great deal of pride in my work and do not want a misunderstood sequence of events to reflect substandard care.”

Our insurer set us up with a different medical-supply company — and we never had another problem.

Then there was the orthopedist who walked into Becky’s hospital room with a hacking cough only weeks after Becky’s trach operation. We escorted her from the room. There was the occupational therapist who showed up at our home with a hacking cough, even though, presumably, she had been told about Becky’s respiratory problems. We escorted her out the door. There was Becky’s first physical therapist, who got mildly pissed off whenever Becky wanted no part of that day’s session — never mind that she rarely felt well enough to take part as fully as she might have. Not only was the therapist insensitive to Becky’s health, but she apparently didn’t understand that kids with achondroplasia don’t really need physical therapy; some experts go so far as to recommend against it entirely. Milestones such as sitting up, standing, and walking simply come later than they do with average-size kids, and the worst thing you can do is to push them before they’re ready.

We put up with the therapist because the early-intervention agency with which we had somehow been hooked up kept sending her over and because we figured the interaction would be good for Becky, as long as she wasn’t challenged beyond her physical limits. But we were made to understand — I’m quite sure of this, even though it was never expressed directly — that we were lackadaisical about our child’s needs, overprotective, and did not have as firm a grasp on what should be done as they, the experts, did. One day, after Barbara and I were condescended to by the early-intervention team at the agency’s headquarters, we nearly pulled Becky out. Several things were made clear: our parenting skills were inadequate; Becky’s lack of progress was somehow our fault; and that, by God, we’d better shape up. If we hadn’t liked Becky’s speech therapist and hadn’t wanted to embarrass ourselves in front of her, I’m quite sure we would have told them off right on the spot.

The bottom came later that fall and winter. On a gray weekend day in October, I was driving Tim, Becky, and two other kids whose parents we were friendly with to a roadside farm in Ipswich, maybe twenty minutes from our home, to buy pumpkins, eat apple-cider donuts, and look at the barnyard animals. Becky had even more mucus than usual, and I had to pull the car over a couple of times on the way so that I could suction her out. I guess I didn’t make too much of it, or I would have turned around and headed home. But that night, she slid downhill, her oxygen-saturation numbers dropping below 90 despite the best efforts of her nurse. The next day, it was back to the PICU at Mass General, where she spent several days. She recovered, though, and she was home by the end of the week.

Then, the week before Christmas, it happened again. This time we acted more quickly and got her to Mass General before she got as sick. We have photos of her during this time, a board strapped to her arm, tubes, wires, the trach hose — and yet she’s sitting up, something she’d been doing for several months by then, looking at the camera, and smiling, the upturned corners of her mouth visible beneath her pacifier. Santa Claus visited the children’s floor, and we have photos of him and Becky, eyeball to eyeball. There’s an unafraid curiosity in Becky’s eyes, in contrast to the combination of fascination and fear with which she regarded Santa when she got a couple of years older.

Becky was released from the hospital on Friday, December 24, 1993. We were desperate to get her home before Christmas, not so much because of the holiday, but because we knew that Mass General would be all but deserted that weekend. What’s the point of being in the hospital if you can’t find a nurse or a doctor? Besides, Becky was definitely better. She enjoyed opening her presents on Christmas morning. With some trepidation, we even visited friends of ours with her and Timmy that afternoon. Becky kept on smiling. She obviously was happy to be out of the hospital, too.

There would be more rough times ahead, but not as rough as these. The worst was over.

***

Sometime in the spring of 1993, when Becky was still in the hospital, I attended my first meeting of Little People of America. Barbara was at Becky’s bedside, so I strapped Tim into his car seat and drove to the Boston suburb of Newton, where a family with two boys — the older average-size, the younger achon — was hosting a meeting. There were maybe a couple of dozen people milling about. Probably ten or so were dwarfs, including Ruth Ricker, whom we had only recently met, and whom I relied on to serve as my guide into this new world.

It was, of course, a surprise to see this many little people gathered in one place. Mostly, though, I was pleased to see that nearly everyone appeared to be physically capable, gainfully employed, and reasonably happy. Talking with the parents who were hosting the event was pretty enlightening, too. Their achon son, Brian, a bright, active boy then in elementary school, had had decompression surgery on his foramen magnum when he was just a baby. It was a more serious medical problem than Becky’s, yet he was running about, obviously fine. That was reassuring, but also a little scary, since I knew that Becky’s respiratory woes did not exempt her from the possibility of developing other complications, including Brian’s.

We made our escape just in time. There was a large bowl of Cheese Doodles that had been set out right at Tim’s-eye level, and, despite my best efforts, he had scarfed down a fearsome quantity. I’m sure I don’t have to tell you what happened as soon as we started driving home. At least it didn’t happen on their rug.

As we became more involved in LPA, going to local meetings and reading back issues of the organization’s newsletter, LPA Today, with which Ruth had provided us, we learned some important lessons. One of the first was a course in politically correct terminology. It’s a matter of considerable controversy and debate within the dwarf community. And though I’ve alluded to it several times, I haven’t really explained it. Now I will.

The best thing you can call our daughter is “Rebecca” or “Becky.” The worst is “midget.” Everything else — “little person,” “LP,” “dwarf,” “person with dwarfism,” “achon,” “hey you” — falls somewhere in between. Before we started attending LPA meetings, Barbara and I would have guessed that dwarf and midget were equally offensive (or inoffensive), and that little person, a term with which we were vaguely aware, was probably the most acceptable. It turns out to be a whole lot more complicated than that.

Once, at an LPA parents’ meeting, I heard an average-size mother say that she nearly burst into tears of rage the first time someone referred to her dwarf child as a “midget.” Why? I wondered. Before her daughter had been born, I couldn’t imagine that this mother was any more capable of parsing dwarf and midget than we had been. Within the dwarf community, the response to what is sometimes called “the M-word” is visceral; but, obviously, it is also learned. To me, it makes more sense to educate people than it does to excoriate them for a violation of political correctness that they don’t even realize they’re committing.

Dwarf is an ancient word dating back many centuries. In the unabridged Oxford English Dictionary (OED), the meaning of dwarf is straightforward and neutral: “A human being very much below the ordinary stature or size.” The dictionary traces uses of the word as far back as the year 700. By contrast, midget was coined only in 1865, and its definition goes to the heart of why it is so deeply unpopular: “An extremely small person; spec. such a person publicly exhibited as a curiosity.” In other words, it’s impossible to think about the word midget without placing it within the context of the freak show, of the circus, of Midget Villages, and of Munchkins traipsing about the Land of Oz. Then, too, the root of midget is midge. And as the short-statured artist Jacki Clipsham puts it, “A midge is a small insect that can be killed with impunity.”

For some reason, midget has another meaning as well. It refers only to a dwarf whose limbs are in the same proportion to his body as an average-size person’s — generally, to people whose short stature is the result of a hormonal deficiency rather than a genetic bone anomaly, as is the case with achondroplasia and other skeletal dysplasias. Because midget was coined at the height of P. T. Barnum’s career, and because his most famous performers, Charles Stratton and Lavinia Warren, were proportionate dwarfs, it is often assumed that it was Barnum himself who came up with the word. There is, however, no evidence for that. The word midget did not appear anywhere in Barnum’s 1855 autobiography, The Life of P. T. Barnum. In fact, he referred to Stratton repeatedly as a “dwarf.”

The OED is cryptic as to the 1865 origin of midget, attributing it to “W. Cornw. Words in Jrnl. R. Inst. Cornw.” Thanks a lot! But the dictionary entry also notes that, in 1869, it was used specifically to refer to a small person in Harriet Beecher Stowe’s novel Old Town Folks: “Now you know Parson Kendall’s a little midget of a man.” Stowe’s usage may, in fact, be the true origin of midget.

I put the matter to A. H. Saxon, the author of a highly regarded biography of Barnum, and, like Barnum and Stowe, a lifelong resident of Connecticut. He wrote back:

As to Barnum, to the best of my knowledge he did not coin the term “midget” &, as you know, used the word “dwarf” when referring to the Thumbs, Nutt, &c. I have seen him use the word “midget” in a few of his letters written toward the end of his life — the 1880s — but he must have picked it up from someone else. He was a great reader, of course, & knew the Beechers.

The deep unpopularity of the M-word is a fairly recent phenomenon. Indeed, in the freak shows of the nineteenth and early twentieth centuries, dwarf had a more negative connotation than midget, according to the historian Robert Bogdan, because dwarfs were farther down the pecking order, and were assigned more degrading roles:

The terms midget and dwarf had important social meaning in the amusement world. Small people who were well proportioned — “perfect humans in miniature” — in particular coveted the term midget for themselves as a way of disaffiliating from the more physically deformed dwarf exhibits. For midgets, who were typically cast in the high aggrandized mode, to be called a “dwarf” was like being called a “child”: it was an insult. “Dwarfs” were associated with exotic freak or circus clown roles, and these roles “midgets” shunned.

As we have seen, the word had not fallen into disfavor even by 1957, when Billy Barty held the first get-together for dwarfs under the name “Midgets of America.” And when it turned out that many of the people who showed up in Reno were disproportionate, Barty’s solution was to change the name to Little People of America — not because midget was considered offensive, but because Barty wanted a name that both proportionate and disproportionate members, midgets and dwarfs, could accept. Soon, little people became the preferred term.

It’s understandable why the newly empowered dwarf community settled on little people: it’s safe, benign, euphemistic, coined at a time when people liked euphemisms. What’s not entirely clear, though, is why dwarf eventually made a comeback, whereas midget slid into unacceptability. Certainly a lot of it has to do with the idea of being displayed in public. Dwarf is harsh, guttural, but its origins are less emotionally charged. Still, it took a younger, more politically active, in-your-face generation to popularize its use. Len Sawisch, who was involved in the creation of the Dwarf Athletic Association of America in the 1980s, says that the use of the D-word was initially quite controversial. Angela Muir Van Etten told me that the title of her 1988 autobiography, Dwarfs Don’t Live in Doll Houses, was so unpopular among some LPA members that she thinks it hurt sales. But dwarf slowly grew in acceptance to the point at which, today, it’s probably more popular with people under, say, fifty than little person is. In the 1990s some younger activists even took a stab at changing the name of LPA to reflect this new consciousness, with the American Association of People with Dwarfism being a typical suggestion. The matter was dropped because too many older members were still uncomfortable with dwarf. But the little person legacy remains something of a sore spot.

“I think that little person, to an intellectual, sounds very derogatory,” says Matt Roloff, the current president of LPA. “It sounds more derogatory than the word midget. Just instinctively, people think little person would be a demeaning term.” Adds Sawisch: “Little people is just euphemistic crap. If I had anything to say about it, I would get rid of the term little people before I’d get rid of the term midget. My compromise as a young man was to grab ahold of the term dwarf.”

Certainly one reason that dwarf has grown in acceptance is that it is rarely used in a truly derogatory context. By contrast, midget is often used as an epithet, a derisive description. I think it’s significant that when the intent is to put down a little person who also happens to be disproportionate, the M-word is what gets invoked, even though it supposedly pertains only to proportionate dwarfs. Think of “midget wrestling,” a term that stuck even though most of the performers were achondroplastic dwarfs. In Massachusetts in the 1980s, a judge whose budget was getting squeezed over a political hiring dispute angrily referred to the then-president of the state senate, who was unusually short, as a “corrupt midget” — a nickname that stuck thanks to the gleeful efforts of a tabloid columnist.

Now the dwarf community may be slowly coming full circle, embracing midget as a way of lessening its sting. Danny Black, an entertainer and talent agent who is an achondroplastic dwarf, has enraged many people in LPA circles by selling T-shirts featuring such phrases as midget porn star and midget petting zoo, the latter accompanied by a cartoon of a dwarf’s being patted on the head — the sort of all-too-typical encounter with the average-size world that many LPs complain bitterly about. But despite the criticism that Black engenders, his best (indeed, practically his only) customers are dwarfs. Black says he’s trying to reclaim midget the way more politicized parts of the gay community have reclaimed queer and the way some parts of the African-American community have made the N-word acceptable, at least among themselves. “Resignification,” he calls it, the idea being that a minority group can change what an epithet means — or signifies — by embracing it for its own use.

Like Jacki Clipsham, Matt Roloff, and Len Sawisch, Black is uncomfortable with little people. “To me, I cringe at that,” he told me. “‘Little’ — a term of insignificance. A term meaning ‘child-like,’ a term meaning ‘not as great as something big.’ But at the same time we’re going around saying, ‘Think big, think big.’ Are we denying something here? What’s going on? Thinking big, but we’re little people. You see Fisher-Price little-people toys, little-people day care. It’s childlike, it’s insignificance.”

At the same LPA parents meeting where I heard the mother say how hurt she felt when someone called her daughter a midget, Joan Hare — a dwarf who runs the Disability Resource Center at the College of San Mateo, near San Francisco — talked about how the language of dwarfism is evolving. Her father, she said, would get quite upset whenever he heard the M-word. Yet her twenty-three-year-old daughter, Rebecca, who’s also a dwarf, often uses midget with her friends. Like Danny Black, Joan Hare compared midget to queer and nigger, and talked about how gays and blacks have reclaimed those words in part to drain them of their potency.

“Once you take a word back,” she said, “it has no power to hurt.”

***

Becky never really crawled. Most kids with achondroplasia don’t. Their heads are too big and heavy, and their arms and legs are too short. The closest they come to crawling is something called “snowplowing,” in which a child will prop his rear end up in the air and move forward with his legs, pushing his head across the floor as though it were a plow. Becky did some of that. But her preferred form of locomotion was to sit up and pull herself forward with her legs, scrunching her butt back and forth to facilitate the process. She invariably had a huge grin on her face when she did this, and it was pretty funny to watch.

A few weeks before Christmas in 1994, Becky and I went to a party held by the early-intervention program in a community center in Lynn, a down-and-out city a few miles from our home. Barbara and Timmy were gone for the weekend, visiting Barbara’s family in Albany. Most of the partygoers were young, apparently single mothers, mainly Latino, many of them with their mothers, keeping an eye on a roaming pack of toddlers. Not only was I one of the few fathers there, but Becky was one of the few kids with any obvious sort of physical difference. The early-intervention program’s clients, it seemed, were mainly struggling with poverty and discrimination rather than disability. It gave me some insight into why some of the program’s staff members were so arrogant, although an explanation is not the same as an excuse. I could only imagine how they condescended to these women.

Becky had come a long way by this point. Months earlier, we’d set her up with a new physical therapist at North Shore Children’s Hospital, in Salem. Not only was this therapist terrific, but Becky seemed to understand that, by going to her office rather than having her come to us, she was expected to make more of an effort.

Becky rarely needed oxygen anymore, except occasionally when she was sleeping. Usually her trach tube was covered with a disposable device made of plastic, with two paper air filters on the sides; it looked sort of like the head of a tiny hammerhead shark, with the filters where the eyes would be. Increasingly, though, she was using something called a Passy-Muir valve, which let her breathe in through the trach opening, but not out. When she’d exhale, air would leave her lungs via the usual route, up her windpipe and out through her nose and mouth. This meant that her vocal cords once again were engaged. Becky still couldn’t talk, and her speech therapist had gone so far as to suggest that she learn sign language, advice we rejected out of concern that it would only delay her from talking still further. But for the first time since her surgery, her voice was back. We were thrilled.

I’d brought my video camera to the party, and I fiddled with it idly as Becky and I sat on the floor, waiting for something to happen. Soon enough, something did. Becky had been trying to stand and walk for several weeks. Now she began trying again. I turned the camera on and aimed. She would lean forward from a sitting position until her forehead was touching the floor, her legs splayed out on either side — a maneuver that would be impossible for someone lacking an achon kid’s loose joints and flexibility. Then, suddenly, she would pop up, stagger uneasily, and fall back down on her rear end, laughing in delight. I encouraged her to keep trying. I sensed that this might be the day, and how many parents are lucky enough to have the videotape rolling at the very moment that their child takes her first steps? Again and again she’d pop up, only to fall. This went on for maybe ten or fifteen minutes. Then it happened. She rose, balanced herself somewhat uncertainly, and started making her way toward me, left foot, right foot, one, two, one, two, until she had closed the six-foot gap that separated us. Barbara and I watched the tape recently, and you can see her getting bigger and fuzzier as she heads toward me, finally filling the screen as she dives into my lap.

After all those months of darkness, of worry, of stress, here, finally, was the little girl we always knew she would be. Becky was tough, a fighter. In those worst moments in the hospital when she had RSV, it was her sheer refusal to give in that saved her from having to be drugged into a coma and put on a respirator. She was a feisty, determined individual, struggling with the burdens of ancient genetics and the mixed blessings of modern medicine to stand up on her own, to walk into the light, to say, “Here I am.” For me, it was one of those unforgettable flashes of insight. I wanted to learn to see the world as she saw it, as though through her eyes. And I knew that if I were patient enough, and humble enough, then perhaps one day I could.

She was two years and three months old — more than twice as old as an average-size kid usually is when she takes her first steps, but right on target for a child with achondroplasia. Even with everything she’d been through, her development was on schedule.

And her childhood interrupted was soon to be transformed into childhood resumed.

< Chapter Six | Contents | Chapter Eight >
Advertisements