Perceptions of Amputation: Have They Changed?
Christina Skoski, MD, was a teenager when she received her first prosthesis in 1962. It was a crude but serviceable carved wooden leg. She cried.
Skoski, a retired anesthesiologist, was 11 years old when she was diagnosed with a fibrosarcoma behind her left knee. She underwent a transpelvectomy four years later. Fortunately, her prosthetist had attempted to make her prosthesis look "human," and Skoski says she was able to return to high school feeling "semi-comfortable" about her appearance. Had her prosthetist not taken the time or care to make her prosthesis look as lifelike as possible, Skoski likely would have felt highly uncomfortable about returning to school.
"One of the greatest difficulties for a person undergoing amputation surgery is overcoming the psychological stigma that society associates with the loss of a limb," write Janos Ertl, MD, et al., in the article "Amputations of the Lower Extremity" (Medscape Reference, updated May 30, 2012). "Persons who have undergone amputations are often viewed as incomplete individuals."
Have perceptions of amputation among healthcare providers and mainstream society in the United States changed over the last 50 years? The O&P EDGE asked a number of experts to weigh in on this issue. While their perspectives converge on a variety of points, there were also some surprising differences.
According to Hugh Herr, PhD, founder and chief technology officer at iWalk, Bedford, Massachusetts, the shift in thinking among healthcare providers has been "seismic." Fundamental advances in prosthetic technology, he says, have been the primary drivers of that shift. Herr underwent bilateral transtibial amputations in 1982 as the result of frostbite-induced gangrene when an ice-climbing weekend on Mt. Washington, New Hampshire, went horribly wrong. He was 17 at the time. (Editor's note: To learn more about Herr, read "Hugh Herr: Beyond the Merely Human," The O&P EDGE, March 2010.)
Mainstream society will always be influenced by preconceived notions and prejudice as it relates to amputations, says Herr, who is also an associate professor of media arts and sciences and director of the Biomechatronics group within the Massachusetts Institute of Technology's (MIT) Media Lab, Cambridge, and an associate professor in the Harvard-MIT Division of Health Sciences and Technology, Cambridge, but "today's technology continues to advance at a rate that eclipses common perceptions...." With the emergence of bionics-where electromechanics emulate or even extend normal physiological function-technology advances will increase even more precipitously, he says. "It is up to us-the scientists, researchers, and the bionics industry at large-to transcend these perceptions and develop artificial limbs that merge more intimately with the human body."
Stella Sieber, a biological science laboratory technician for the National Institute of Environmental Health Sciences (NIEHS) Laboratory of Toxicology and Pharmacology Microarray Group, Research Triangle Park, North Carolina, credits the contributions of orthopedic surgeons like Ernest M. Burgess, MD, PhD, and Douglas G. Smith, MD, as being integral to helping the medical community see amputation surgery as a new beginning rather than as a medical failure. Both of these surgeons, Sieber says, have done extraordinary work to promote a "team approach" that considers patient needs, challenges, and goals before, during, and after surgery. "Passion about amputation and prosthetic education, talking with and getting to know the patient, and offering very practical, solid wisdom has improved and changed the perspective of some healthcare providers," she says. "This has had a positive, cumulative effect on individuals' outlooks and outcomes postamputation." Sieber lost both of her legs in July 2001 while trying to help some people whose SUV had hydroplaned off the road and flipped over. Sieber, then in her mid 40s, was at the trunk of her car getting a pair of shoes when another car swerved off the road and hit the back of her car, sandwiching her in between. "Both of my legs were instantly amputated," she says.
According to Scott Cummings, PT, CPO, FAAOP, two generations ago it was the rare individual who could break from the mold of those with disabilities. They were stigmatized as being "damaged," he says. "If you used a wheelchair, crutches, or had some sort of disability, you were often sectioned away from your peers." Not so today, says Cummings, who works at Next Step Bionics & Prosthetics, headquartered in Manchester, New Hampshire, is a past president of the American Academy of Orthotists and Prosthetists (the Academy), and serves on the Amputee Coalition's Science and Medical Advisory Committee (SciMAC). "Amputees play on sport teams, soldiers return to active duty, and employees get back to work."
The explosion of national news coverage surrounding the men and women who have lost limbs serving in Iraq and Afghanistan over the past decade has helped "desensitize" the general public to limb loss in a way not experienced before those conflicts, says Dave McGill, vice president of legal and reimbursement for Össur Americas, Foothill Ranch, California. McGill lost his left leg above the knee a few weeks before Christmas in 1996. While trying to push a young woman's stranded car off the road, another car hit him from behind. He gives the example of the remarkable success of the Wounded Warrior Amputee Softball Team (WWAST), which barnstorms around the country usually defeating its able-bodied competition. "It illustrates just how much you can blur the boundaries between able-bodied and disabled," says McGill, who writes the blog, less is more, in which he discusses the realities of living with limb loss and limb difference. He also co-hosts the podcast Amp'd with fellow amputee Peggy Chenoweth discussing issues affecting amputees.
Cummings agrees. "Amputees are doing things that even ten years ago would have seemed impossible. Paralympians, wounded warriors, and others who require prosthetic care are pushing the boundaries of functional accomplishment," he says. "The medical community has begun to realize what the O&P profession has long understood-that amputation surgery should not necessarily be seen as a negative because, in many cases, it can enhance quality of life."
Mark Urich is an adaptive Alpine ski racer in Winter Park, Colorado, and currently races for the National Sports Center for the Disabled (NSCD). He was born with proximal femoral focal deficiency (PFFD), which resulted in his right leg being amputated above the knee when he was two years old. Urich believes the combination of veterans with disabilities returning to active duty, the Paralympic movement, and more media coverage in general regarding what people with disabilities are doing to enrich their lives has helped to improve the public's perception. "We can always use more coverage, though, especially in sports," says Urich, who adds that ESPN should have an ESPN-D and show only adaptive sports. "Maybe instead of all this poker I seem to see lately," he says.
The Hollywood Effect
Inspiring stories are easy to sell, our experts say. Now more than ever, individuals with amputations are being written into the story lines of popular television shows like Grey's Anatomy, The Walking Dead, and Hawaii 5-0, and movies like The Man with the Iron Fists and Rust and Bone.
"It's important to do an accurate portrayal of a person learning to live with a disability," Glen Mazzara, executive producer and showrunner for The Walking Dead, is quoted as saying in the November 16, 2012, issue of The Hollywood Reporter. While he acknowledges that some television shows capitalize on the "shock value" associated with amputation, these storylines also highlight "a socially relevant issue with so many military veterans returning home with disabilities including lost limbs."
It's just another part of the human experience for Carrie Davis, who was born in 1971 without a left arm below the elbow. "But it is nice to see it get acknowledged more and more, she says." Davis runs Amputee Empowerment Partners, a nationwide peer-mentoring program for amputees, family members, and care providers, with Hanger Clinic, headquartered in Austin, Texas.
Popular media has traditionally focused on the limitations of disability that arise from losing a limb, but Herr says the emergence of bionic technology is beginning to change that focus. "The media increasingly recognizes that the real story lies at the other end of the spectrum," he says. "Disabilities exist and [have] persisted for so long because of poor technology. As we march into this 21st century, bionics will...become more and more pervasive in society with greater and greater sophistication and nuance."
That, says Herr, will make "Hollywood's dream of bionic superhumans a realizable, commonplace goal."
The media does not deserve all the credit for the rise in awareness, according to Skoski, who also serves on the Amputee Coalition's SciMAC. Legislation has also played an important part. When Skoski attended college in the late 1960s, she says she had to get special permission to park in the faculty lot and take the elevator. Legal changes illustrate how attitudes and acceptance of disability have evolved in the United States. The Rehabilitation Act of 1973, for example, marked the first piece of federal legislation that dealt directly with discrimination against people with disabilities. Indeed, "the standards for determining employment discrimination under the Rehabilitation Act are the same as those used in Title I of the Americans with Disabilities Act," according to A Guide to Disability Rights Laws, published in 2009 by the U.S. Department of Justice Civil Rights Division.
The Battle Within
While there are a number of factors that influence the way individuals with amputation are viewed by society, oftentimes the most difficult perceptions to deal with are one's own. Davis says that during her younger years, "I often felt angry or sad that I was the only girl in the world with a hook." Today, Davis works with many young women who have lost arms and believes the most difficult transition for them is learning how to deal with their "new body." Men too, she says, feel the difference. They tell Davis, "I just don't feel like a man anymore," or, "I'm not the man I used to be."
Gender can play a big role in the way amputees view themselves, says Eric Westover, a nonprofit consultant and motivational speaker. "This goes back to societal views that are imprinted on us in television, magazines, and billboards," he says. "Generally, you won't see a female upper-extremity amputee sporting a body-powered prosthesis with a hook. They go with a cosmetic hand or something that looks like what they lost."
Westover had his right arm amputated below the elbow in 2004 following a work-related nerve injury in 1992 and the onset of complex regional pain syndrome (CRPS) in 2001. "I want function, and the cooler it looks, the better. My thought is, if I have it, I might as well flaunt it." Westover is the goalie for the U.S. National Amputee Soccer Team and vice president of the American Amputee Soccer Association.
Marshall Cohen, PhD, chairman of the Amputee Coalition board of directors, also believes that gender can influence selfperception in individuals with amputation. He cites a study about women in the military who experienced traumatic amputation. Results suggest that these women are more resilient after the loss of a limb, particularly when they recover in a military culture. Interestingly, the study also found that servicewomen seemed to have less need to camouflage their limb loss with a lifelike prosthetic cover. Cohen is a practicing real estate attorney in New York, New York, and a "recovering academician." He lived with an enlarged right side from the hip down for 63 years until he decided to have his leg amputated above the knee in September 2003.
Cummings says that he doesn't perceive gender to be a big issue with how amputees in the United States view themselves, but he has seen a difference when working with patients from other countries. "We occasionally note a discrepancy when patients from overseas visit us for care," he notes.
Al Pike, CP(E), says a person's self-image is formed not only by his or her gender, but also by "age, family, upbringing, environment, pre-amputation peers, and geographic location." Pike, who retired in April 2012 after 48 years in the O&P industry, is owner and founder of Amputees In Hollywood, an online talent source for actors with amputations.
Sieber agrees. "Upscale, more affluent communities seem, for the most part, to be sheltered from the exposure to many amputees," she says. Rural, poor communities, on the other hand, know hardship and difference.
An estimated one out of every 200 people in the United States has an amputation, according to a National Limb Loss Information Center (NLLIC) fact sheet. And while that number makes it fairly likely that an average able-bodied American will encounter an individual with an amputation on his or her next trip to Disneyland, it's much less likely that this same person will encounter an amputee during the course of his or her typical day.
Regardless, there has been a dramatic downward shift in the level of stigma associated with limb amputation in the United States. In the five decades since Skoski first donned her wooden leg, perceptions of disability in general and amputation specifically have undergone a sea change. If Skoski had undergone her amputation in 2013, she may well have still cried when she received her first prosthesis, but chances are her reintegration into teenage life may have been a lot easier-psychologically and physically.
"We know our limb loss does not define us as individuals," Cohen says. "We see physical limitations as something we solve. We view our prosthetic provider as a partner in helping us find solutions."
Betta Ferrendelli is a freelance writer based in Denver, Colorado.