SED at the turn of the millennium


Mark Povinelli
- courtesy photo

Contemporary actor Mark Povinelli says he can understand Dunn’s reasons for fast living. He cites the isolation of being different—in Dunn’s case, dwarfed, crippled and brilliant—the intensity of plumbing the depths of one’s own psyche to portray difficult characters, Dunn’s bad prognosis and his constant pain.

In an interview for this article in March 2002, Povinelli describes himself in relation to Dunn as “an actor with similar aspirations, the same diagnosis, from a different era.” He stands 3' 9½" and weighs 75 pounds (115 cm, 34 kg). He was born in 1971 in Cleveland, Ohio, the last of four siblings.

At 31, Povinelli does anything he wants to do, including playing basketball with other Little People. “I’ve been a member of LPA [Little People of America] since I was two,” he says. He was two when he was diagnosed with SEDc—and six when he had his first orthopedic surgery to correct a complication that quickly would have proved fatal. His surgeon was Steven E. Kopits, “whom I hold dear,” says Povinelli.

At birth, Povinelli weighed 7 lbs., 2 oz., but measured a mere 17" long (3.2 kg, 43 cm). That measurement put him off the growth chart, where an average newborn is 20" (50 cm). “The doctor told my parents something was up with a growth disorder,” he says, “but he didn’t know what.” Cleveland Clinic did extensive testing and came up with a theory about an enzyme disorder. The family moved to Washington, D.C., when baby Mark was 18 months, and the search for an accurate diagnosis continued.

“The hospital there was stumped as well. It was only when my Mom saw an article in Time magazine about a short stature clinic in California that progress was made. She suggested to the doctors in D.C. that they send my information to the California clinic. They said that it would be much easier to send it up the road to Baltimore, to Johns Hopkins and Kopits,” Povinelli says. The hospital apparently offered no explanation for its failure to refer the family to Kopits from the start. “And this was the early 1970's. I can only imagine what Michael Dunn's family dealt with.”

Phobe Dorin recalls: “Michael used to go off periodically to a clinic, somewhere, where they were doing research on people like him. They told him they couldn’t do anything to help him. But he went essentially to lend his body for study, in case they could learn something that would help people like him in the future.” She doesn’t remember which hospital or clinic this was, but almost certainly it was Johns Hopkins, in Baltimore, MD. The hospital boasts the renown Division of Medical Genetics, established in 1957 by Victor McKusick, MD, the “father of medical genetics.”41

Orthopedic adventures

Povinelli’s first surgery was an emergency spinal fusion at age six, to repair a neck dislocation caused by a playful wrestling match with his brother. “I suddenly found I couldn’t move my legs, and I was having trouble breathing,” he recalls. He relates the blackly comic scene of crawling to his grandmother, who mistook his complaint for clowning. “She just laughed and said, ‘Yes, dear’—till I peed on the floor.” When his parents returned home, they were panic stricken.

The wrestling had caused dislocation at the base of the skull, at the peg-shaped neck bone on which the skull pivots. This peg—called the dens or the odontoid process—is often underdeveloped in SED and in many other skeletal dysplasias. The resultant neck instability (atlanto-axial instability) is extremely dangerous.

Povinelli’s dislocation fortunately did not sever any nerves, but it did compress his brain stem, impairing his breathing and causing temporary paraplegia. Without immediate expert care, he would have died. The first treatment was traction, to pull the head and neck back into alignment. Then Dr. Kopits performed spinal fusion, grafting bone onto the uppermost vertebrae to produce a column of bone that would be solid, once healed.


Steven Kopits, MD
©Spring/Summer 2000
Pierre House Happenings


Victor McKusick, MD
©2000 Who's Who in America

The primary healing process took place over six months, during which young Mark lived life in a halo cast. A metal “halo” encircles the head and is attached with four screws or “pins” going straight through the skin, into the skull; the halo is supported from below by vertical posts that anchor in a body cast extending from shoulders to pelvis. The pins are painted with disinfectant twice daily, to prevent bacteria from entering the holes.

All went well for the first four months in the cast—till one day when Povinelli turned a little too sharply, to look at something: “I thought it was cool—I could suddenly see off to the side better than before!” But his mother was panicked anew, seeing that he had ripped loose two of the pins.

Kopits made a long-distance house call. He flew from Baltimore to D.C. to perform emergency repair surgery with replacement pins, rather than let his patient risk neck injury during transport. Povinelli remembers the flurried transformation of the kitchen table into an operating table, the nurse whose hand he nearly crushed between his halo frame and the table, his wide-eyed family hovering at the door, and his own thrashing and screaming.

It all went fine. He still has four dents in his skull, where the holes healed over—two of which are bigger than the other two.

During his convalescence, he was showered with mail from his classmates in parochial school. “The nuns made them write to me,” he says. “I guess their writing assignment was ‘Be nice to Mark’ letters. I found I had become a kind of hero. It was actually a really positive experience. I guess I was probably insufferable for awhile,” he muses.

But tiny as he was, Povinelli couldn’t walk in the heavy halo cast. After six months of inactivity, “my legs were like sticks,” he says. The treatment was several months of physical therapy and a gradual return to normal activity.

Fortunately, Povinelli has no chest constriction. But like Dunn, he did have hip joint malformation, a condition called coxa vara (“inward-bent hips”). In this condition, the upper femur develops with the head (ball) coming off the shaft at about a right angle—90°—instead of about 126°. Untreated, it causes restricted motion—both in swinging the leg outward (abduction) and rotating it inward. It also causes progressive hip joint deformities that produce a waddling gait, swayback, and early arthritis.



The x-ray above shows a normal hip, on the right side of the frame, and a hip with coxa vara, on the left side of the frame (which is the patient's right hip).

-
This one shows the same patient after surgery. The hardware may be removed later.

X-ray illustrations from Sandefur E, Mackenzie W:  Developmental coxa vara: clinical case presentation Alfred I. Dupont Institute website. 1995 Aug 2. http://gait.aidi.udel.edu/res695/homepage/pd_ortho/educate/clincase/coxavara.htm

It is possible that Dunn actually had the same condition, and that the reports of hip dislocation are inaccurate; the two conditions cause similar end results. Wheeless’ Textbook of Orthopaedics notes that coxa vara is almost universal in SEDc, and that “the combination of delayed ossification, high riding femur, and limited abduction often gives the false impression of a dislocated hip.”42

At age nine, Povinelli again underwent surgery with Dr. Kopits, for femoral valgus osteotomy—a procedure to cut, realign, and screw back together the upper part of each femur. He spent the next three months in a spica cast extending from chest to feet, with legs splayed; and he got around on an auto mechanic’s creeper, lying on his chest, propelled by his hands. But he couldn’t push the creeper over carpeting, “so I had to spend most of my time in the kitchen,” he recalls ruefully. After the cast cutting came more months of physical therapy, re-learning how to walk.

Around age 14, he developed a sudden “tremendous pain” in his left hip. X-rays revealed a hairline fracture going down the femur. Six months on crutches led to full healing, and the orthopedic adventures were over for awhile.

During Povinelli’s junior year in college, at age 21, he found himself increasingly hobbled by severe ankle pain. Arthritis had already set in, due to badly aligned bones. Kopits operated on both ankles to realign the bones, so that healthier tissue would bear more of the body’s weight. After three months in casts—and more physical therapy—Povinelli says the pain “vanished.”

“It’s a tremendous boon for my acting to be as physically able as I am,” he says. “It gives me a much broader physical repertoire.”

Considering his history, does he hesitate to be active and possibly bring on arthritis earlier? “Well, I wouldn’t do bungee jumping, no,” he laughs, “but for a hundred other reasons than my joints. But I want to live life now, rather than trying to control the future.”

Dr. Kopits died of a brain tumor at age 65, on June 18, 2002, while this article was in production.

Self, stature, and society

Povinelli’s parents signed him on as a member of LPA when he was just two, after they learned his diagnosis. His wife, Heather, is also a Little Person, and together they have “at least a façade of a normal life,” Povinelli jokes, referring to his irregular employment. They own a house and hope one day to remodel the kitchen to their own scale, so they can quit climbing on and off stools for cooking.

LPA was founded by Vaudeville actor Billy Barty in 1957, during Dunn’s lifetime, but Dunn was not a member. Povinelli points out that only about a quarter of Little People today belong to the organization.


Selmier carries Dunn, eating a hotdog, through New York
©Feb. 14, 1964, Life

Indeed, Dunn’s press kit biography says he steadfastly spurned membership in another organization—the Little Men’s Protective Association, “made up principally of movie midgets…He has continued to decline, out of a determination to confront the big men’s world alone, on its own terms.”16

Phoebe Dorin describes a more personal manifestation of Dunn’s aversion to dwarf camaraderie—an aversion that perhaps betrayed fury at any simplistic implication that short stature alone should be grounds for kinship:

“I fixed him up with a woman I learned about who was his size, a darling woman. Michael didn’t even want to meet her. I finally said: ‘Michael, you can’t expect people to accept you for what you are, if you won’t accept them for what they are.’ So he went. But when he came back after the weekend, he wouldn’t tell me what happened. He only said he never wanted to talk about it again. I’m sure it was nothing she had done; she was a lovely person.”

Yet, Dorin says that Dunn was so touched by fan letters from children with dwarfism that he often went to great effort to meet them—perhaps in expression of the same altruism that once took him to the monastery. “He would sometimes fly out at his own expense and talk to the child and the family. He would tell the parents not to hold the child back, but to encourage those children to become anything they wanted to be.

“His parents told him he could do anything he wanted, which the best thing they could have done—and the worst thing they could have done. He was extremely stubborn and didn’t know when to quit.”

The 1967 article in TV Guide quotes Dunn’s father, Fred Miller, explaining his draconian approach to fostering independence: “We never thought of Michael as being ‘handicapped.’ We never used the word. We knew he suffered pain, but we treated him as we would any other child.”

Miller’s reluctance to make commonsense allowances likely reflects a strong protectiveness of his child, at a time when social norms were much narrower. Before the Vietnam War, there were no disabled activists, no ADA—no concept of a disabled person as a productive citizen. Dunn is quoted as having said that school authorities wanted to put him into “special school” starting in third grade, despite his superior intellect—he started reading at age three and was champion of the 1947 Detroit News Spelling Bee; his parents refused.7,43

Crippled children often were institutionalized with no education, reared to see themselves as burdens on society. An anonymous elderly woman at the Totally Hip discussion board relates her pathetic conclusion after living the first eight years of her life in a hospital for crippled children, because of congenital hip dislocation: “I thought only adults could walk,” she writes.

Dunn’s parents perhaps went overboard in ensuring their son felt powerful. Dorin comments: “They allowed Michael to run roughshod over everyone and himself. He was an only child, and he was so smart and so charming. And there was a lot of guilt, at least on his mother’s part; she always felt she must have done something to cause his condition. He was this smart, charming little person who knew exactly where the boundaries were—and how to push right past them.”

Povinelli, on the other hand, grew up with three siblings, and his parents gave him a more balanced view of success. “I was raised to think that I need to do everything in my power and not let other people set limits for me—but that if I reach a wall because of my size or strength, then I should respect it.” He describes the one exception to this rule, when his parents absolutely forbade him to join the football team in fifth grade, lest he be flattened by his friends. He recalls feeling shocked, incredulous, crushed—and having no appreciation of the risk. He weighed 36 pounds at the time (16 kg)—the size of a preschooler.

While Povinelli admits that many Little People object to being classified as “disabled,” he points out some obvious physical obstacles he faces as a person of short stature—his own kitchen (where all the upper cabinets are wasted space), large appliances, the tellers’ countertop at the bank, cars (his is rigged with pedal extenders and a booster cushion), elevator buttons. So he welcomes ADA, because “it validates your circumstances and your rights.”

He also faces daily ignorance and disrespect—passersby actually crossing the street to get a better look at him or ask personal questions, and people who see him as less than human. “The social norms are suspended. Little People receive the social status of children—which certainly says something about how society regards children.” He adds, somewhat wearily, “The things I go through are things that all Little People go through.”

Actress Zelda Rubinstein, commenting for this article in April, 2002, remarks: “Little People are societally handicapped. They have about two minutes to present themselves as equals—and if they don’t take advantage of that chance, then people fall back on the common assumption that ‘less’ is less.”

But she is not a member of LPA—and in fact has felt ostracized by many members. She does not have a skeletal dysplasia. She stands 4' 3" (130 cm) due to a deficiency of the anterior pituitary gland, which produces growth hormone. “I’m in proportion and am so-called ‘cute,’” she explains, adding, “but I’m no more responsible for that than for my auburn hair, or whatever.”

Musing again about his upbringing, Povinelli observes: “Most parents tend to shelter. The early encounters with society are unhappy, and they see the disrespect. It hurts them.”

Rubinstein adds: “My father felt very guilty about being unable to change my health condition—I was his only daughter, his little girl. But my parents raised me to be very mainstream and to be a leader, since they saw I had leadership qualities.”

Despite all the adverse attention he, himself, has experienced, Povinelli is not surprised to learn that Dunn is quoted in Life magazine as saying that he doesn’t feel like a dwarf inside and is often shocked to confront himself in a mirror. “You are a human, and you spend your day thinking your thoughts about daily life or whatever—not thinking about yourself as a dwarf,” Povinelli explains. “So, yes, it can be a shock when someone calls it to your attention.”

“As an actor, I feel that I’m a leading man stuck in a character actor’s body—but I know if I told people, they would laugh. You have to be aware of the way society sees you.”

Trailblazer


Dunn as Karl Glocken in Ship of Fools
©1965 Columbia TriStar

A great fan of Dunn’s, Povinelli is surprised to learn that Dunn came to feel bitter about being typecast in roles that merely capitalized on his size. “It’s ironic. Dunn is one of the handful [of dwarf actors] who went into acting because he loved the craft,” he asserts. “The majority do so because it’s convenient. He had one of the least typecast careers. I see him as a real trailblazer.

“An actor who bucks the system is sometimes the most brilliant,” he adds. “The most maladjusted people can be the most brilliant.”

Rubinstein agrees that Dunn was a trailblazer. In 1981, new to acting, she founded a theater with the goal of helping herself and other Little People learn all the disciplines of performance, including how to audition in front of professional directors. She explains: “I wanted to name the company after a Little Person who had significantly risen because of their talent. So I named it The Michael Dunn Memorial Repertory Theater.

“Billy Barty came up to me and said, ‘Why didn’t you name it after me?’ I said, ‘Billy, this is a memorial company. You’re still alive—and I hope you live a long time. But you have not done the quality of acting that would single you out, the way Michael has.’ Well, he didn’t like it, of course. But that was all right with me,” she says with airy confidence. “I had locked horns with Billy, before.”

Rubinstein disbanded the theater just three years later, in 1984, after membership dropped from 14 to 8 and funds dwindled. “In the end, people wanted a handout. They didn’t want to turn in the ‘script’ that said they were damaged goods.”

Reflecting on his own reasons for going into acting, Povinelli explains: “I’ve been ‘on stage’ my whole life. My idea was that I was going to bottle that, or harness that, and make people see what I want to show them. That’s the fantasy, anyway,” he laughs, admitting that people still stare at him. Like many Little People, he says he was the class clown while growing up and felt compelled to “ham it up.” But he was able to drop that demeanor after entering the acting profession. “I just don’t feel I need to do that, anymore.”

Dorin confirms that Dunn had begun to grow bitter about being typecast mostly in small, unchallenging roles. “He couldn’t believe how other people saw him—as a freak and a dwarf.”

Yet, the New York Post article from 1965 highlights an interesting distinction: “When Michael Dunn came here seven years ago to make his way in show business, he found that agents considered him a ‘tough sale.’ The trouble wasn’t just that Dunn was a dwarf but that he was a stubborn dwarf who didn’t care to work in carnivals….” And Dunn is quoted: “Agents are funny…I never had any trouble with audiences or reviewers, who after a while saw there was something else besides my being under four feet.”39

Final months

Speaking of their meeting again, after Dunn’s marriage to and divorce from Joy Talbot, Dorin says: “I was shocked when I saw him again, after all those years. He had aged badly—I guess it had been only about six or seven years—and he was very jaundiced. I even wondered: ‘Is this the last time I’m going to see Michael?’ He was going to London to work on The Abdication,” (Warner Brothers, 1974, directed by Anthony Harvey), “and he said he’d call me when he got back.”

She did see him one more time—in the emergency room of Roosevelt Hospital (now St. Luke’s-Roosevelt Hospital), after receiving a phone call requesting her presence. “Apparently he had been picked up drunk on the street,” Dorin says. “He was yellow and trembling. I remember sitting there with John Softness and telling Michael we weren’t going to do this routine anymore, none of us—that he had to stop drinking. We could see his liver protruding.”

Enlarged liver is a sign of alcoholic liver disease; but right heart failure also starves the liver of oxygenated blood, causing engorgement with venous blood, liver dysfunction that mimics hepatitis, and fluid retention in the abdominal cavity (ascites). Alcohol intolerance would be another result.

Dorin continues, “I said, ‘You’re going to London, and if you can’t perform, they’re going to kick you out so fast it’ll make your head spin.’ Mind you, that had never happened. He never showed up drunk for work. He was very professional. Anyhow, he apologized profusely and he promised to stop drinking. And he was sincere. But he had promised so many times in the past. That’s the thing about alcoholism—the addiction rears its ugly head the next day, and nothing changes.”

She describes the appalling disrespect shown by others in the movie industry, on the occasion of his death. At a party, she overhead laughter among a group of people. “So I went over and asked, ‘What’s the big joke?’ They didn’t know I knew Michael—had no idea about my history with him. And they said, ‘Oh, the dwarf died.’ I felt as if a brick had landed on my head. I ran out into the street sobbing.”

She flatly rejects the rumor of suicide. “My understanding from John Softness was that the coroner’s report stated he died in his sleep, of heart and lung complications. The cause of death was not disclosed, because the reporters would have asked the hotel, and the hotel had no information. It would have been up to the family to publish a disclosure after the investigation was over. The rumors are not true. Michael didn’t swim that ocean only to choke on the beach. He had enormous strength of character.

“The circumstances were very bizarre,” she admits, referring to the alleged disappearance of his body and some personal possessions from his London hotel room. “But I feel he was at peace with his life, and with what had happened in his marriage, although he didn’t say much about that to me—it had all been resolved long before.

“Despite his health, I think he was in a good place. He was working at the time of his death, and he had been approached by Gunter Grass about a role he was excited about,” says Dorin, referring to Grass’s plans to make a film adaptation of his novel The Tin Drum.

Softness says he no longer remembers details about the circumstances of Dunn’s death, almost 30 years earlier. He recalls mainly that the funeral was “a very emotional experience. Michael and his parents had been very close.”

Dr. Bell—no Sherlock

A report unearthed from the U.S. National Archives bears out Ms. Dorin’s faith in her old friend. The “Report of the Death of an American Citizen” from the U.S. Department of State, Foreign Service, American Embassy in London was made out on October 12, 1973, by Micaela A. Cella, Vice Consul. It cites Dunn’s place of death as The Cadogan Hotel, London. Notification of his death was sent erroneously to “Mr. and Mrs. Dunn,” c/o Richard M. Rosenthal, in Manhattan. The cause of death, as certified by G. Thurston, coroner for Inner West London: “Cor pulmonale in an achondroplastic dwarf.”

But a copy of the 1973 “Coroner’s Officer’s Report,” signed by Dr. Gavin Thurston, himself, turns up some disturbing information involving a Dr. Bell—no first name, no affiliation cited. Thurston’s narrative begins: “The deceased, a midget, was admitted to this country under a work permit to act at Pinewood Studios in the making of a film. He contacted Dr. Bell on 20th August 1973 complaining of sickness, and due to his severe skeletal deformity he required pain killing tablets. He was given Fortral and Seconal (one a night). He also had a supply of suppositories.”

Fortral (pentazocine lactate) is a painkiller known in the U.S. as Talwin; and Seconal (secobarbital) is a barbiturate, used as a sleep aid. Current prescribing information for both drugs advises they be administered “with caution” in patients with decreased respiratory reserve (such as emphysema or cor pulmonale), because of the danger of respiratory depression. A patient who already takes in barely enough oxygen, for whatever reason, cannot afford to breathe more slowly or shallowly. (continued)

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