When a woman puts on a foot or a knee or an arm, she often finds that it’s not quite right.
Image: Alex Cook
When Jen Lacey gets her toes done, she does both feet, even though one of them is made of rubber. "I always paint my toenails," she says, "because it's cute, and I want to be as regular as possible." But for a long time, even with the painted toes, her prosthetic foot looked ridiculous. The rubber foot shell she had was wide, big and ugly. "I called it a sasquatch foot," she jokes. "It's an ugly man foot."
But let's back up. In 2001, when she was 22 years old, Lacey hit a bump and launched off a friend's motorized minibike, fracturing her left foot. She spent the next ten years in and out of surgery, trying to save her leg. Often on crutches, often on pain medication, often back in the hospital for more surgery, Lacey tried to live a normal life. She traveled to Belize and Guatemala. She got engaged. She got married. But none of the procedures helped, and she was almost always in pain.
"Each time, I told myself I was on the mend, that my crushed foot would find a way to right itself. It didn't," she wrote in Elle Magazine. Eventually Lacey decided to amputate, and had her foot and a section of her leg removed below the knee. She had resisted for so long because she thought being an amputee would mean a life of "no's"—a life without being able to travel or ski or scuba dive, things she loved. But when she realized how far prosthetic technology had come, she decided it was time to take the plunge.
Today, Lacey works with amputees as an advocate. She's the Amputee Empowerment Partners Coordinator for Michigan, a group created by Hanger Prosthetics that connects amputees and offers peer support. She lives in a small town, where she's the only amputee, and when she goes out with her prosthetic leg on display she says she's happy to talk to people about it. "Most people don't have as much experience seeing an amputee, and it's a good thing to see 'Oh she's just being a normal person,'" she said.
Lacey is glad she went with the amputation, but that didn't make things easy. She still struggles with nerve pain. She jokes about her sasquatch foot, but it bothered her. And while a big ugly rubber foot might seem like a trivial thing, it's indicative of a bigger issue: Prosthetic devices have long been created by men, for men.
"Now I'm amputating one of her fake toes in order to make it fit into her shoes."
When a woman puts on a foot or a knee or an arm, she often finds that it's not quite right. Knees are too tall and too stiff, feet don't fit into shoes, hands are big, ankles don't bend to accommodate heels. Every step a female amputee takes puts them face to face with the fact that prosthetics is still a male dominated industry.
It starts at the beginning. Before they even get a device, amputees have to find a prosthetist, a person who they will work with for likely hundreds of hours over their lifetime to find, fit and adjust their device. And that prosthetist not only has to really understand what the patient wants, communicate well, and create and shape devices for the amputee, they also often have to work in private areas.
"When you're an above the knee amputee, the prosthetic socket goes all the way up very high, and it gets very intimate," said Lacey. "They're having to poke and prod in that area." The same goes for upper body amputees—sockets often overlap with the breast area.
But finding a female prosthetist isn't always easy. In 2007, according to the American Board for Certification in Orthotics, Prosthetics, and Pedorthics, only 13 percent of the industry was female. Last year, according to a soon to be published survey done by the American Board for Certification in Orhotics, Prosthetics, the field is 18 percent female. Nancy Havlik, a prosthetist who works at Hanger Prosthetics, remembers entering the field when it was even worse.
"When I was in school, there was only one other female with me. In my region there were only two other female practitioners when I started," she said. Havlik came across prosthetics at a career fair, but she wasn't exactly encouraged to pursue it. "I remember walking in in college, and they said 'you're a female, you cannot do this job.' I will never forget that."
Havlik has worked at Hanger since she graduated in 1996 largely out of loyalty. She said that her bosses at Hanger were the only ones who would take her seriously when she was just starting out.
Having a female prosthetist isn't only about accessing sensitive areas, it's also about being sensitive to a female amputee's needs. Both Lacey and Havlik were quick to stress that there are good male prosthetists out there, but they also said that women simply seem to understand more intuitively what other women care about and want.
"A female prosthetist, they understand why it's a big deal to make sure that you have something that's not as bulky, something that's slimmer that will work for skinny jeans," Lacey said. "I think that men don't [always] understand that about fashion choices and why that's important, and a part of your identity and still feeling feminine and not disabled."
Havlik agrees, saying that she'll spend time trying to slim a prosthetic down by as little as an eighth of an inch. "Men in general can sometimes see a female patient as being irritating and too concerned about cosmetic looks, and really not take them seriously," she said. "I really care what it looks like, I know that that eighth of an inch would really bother me."
Once they've found a prosthetist, women then have to deal with the devices out there. And those devices are designed, almost always, for men first. Smaller, lighter arms and legs are a secondary design challenge for manufacturers, a perk added on after the original design is complete. Scout Bassett, an amputee athlete who works with Ossur, faces particularly unique challenges as a very tiny woman (she's only 4'8") but she said that even taller women have struggled.
"You used to have to weigh close to 130 pounds to wear a microprocessor knee. I could never get a microprocessor knee to even flex," she said. "The everyday walking foot used to start at a [size] 6."
Bassett, an above-the-knee amputee and triathlete, found that at her height she couldn't find a prosthetic knee system that really worked for her. So she runs without one—on a straight leg without a knee joint at all. It took her a while to get used to, but it works for her now. She's a four-time medalist at the ITU Paratriathlon World Championships.
There are a few reasons for all this male-centric design. The history of prosthetics is, in large part, a history of war. One of the earliest written records of a prosthetic device comes from the Rigveda, an ancient sacred text from India. Ironically, that amputee is a woman—the warrior queen Vishpala loses her leg in battle and is fitted with a replacement so she can return and fight again. But after that, the history of prosthetics is nearly entirely a history of men—Roman generals, knights, soldiers, dukes.
Each war the United States has fought has been followed by a boom in prosthetic technology, largely driven by amputees displeased with what they were offered. A Civil War veteran who lost his own leg in battle founded Hanger, a company that last year posted over a billion dollars in revenue. In May of this year, the Veterans Association will celebrate 90 years of research, much of which has focused on prosthetics.
But while veterans have driven the majority of the innovation, they're actually the minority of the patients. According to a recent report from Disabled American Veterans, as of August 1st, 2014, 1,649 people suffered amputations in Iraq or Afghanistan. Only 23 of those people (one percent) were women. In the larger population, things are a lot more even. According to one study, each year, about 185,000 people in the United States go through an amputation of an upper or lower limb. About 30 percent of those people are women.
This is 30 percent, however, of an already small market. And companies claim that the profit margins in designing for women are slim or nonexistent. "There's a lot of complex politics that go into this," Steven Hoover, a prosthetist at College Park, said. "You just cut your potential sales in half by saying 'I'm going to design something for a female.' It's not fair, but it is what it is."
John Miguelez, the president of Advanced Arm Dynamics, said that it's basic economics. "For a manufacturer to decide to design and sell a hand, they want to sell it to the largest population, which in the US is males," he said.
With it so hard to find a prosthetic that functions, it should comes as no surprise that it can be even harder for women to find something with form. Hoover remembers a time before smaller, more feminine foot shells existed. "Everybody made prosthetic feet in one width," he said. "So we were shoving a wide foot into a narrow ladies shoe. I remember grinding a little toe off many of the foot shells, and that doesn't make anybody happy. Now I'm amputating one of her fake toes in order to make it fit into her shoes."
Eventually prosthetics manufacturers started making slimmer, narrower feet for women. But they still could only wear one type of shoe—flats. "It's the littler things that make you feel disabled once again," Lacey said. "I'd go to DSW, which is an amazing place, and it used to be my favorite place ever, and I could get shoes from like one of the rows, or not even a whole row." Even with the smaller foot, women could only wear flats or sneakers.
Women like Lacey also wanted to be able to wear shoes with a heel, but until recently prosthetic ankles weren't made to allow angles like that. In 2008 College Park was one of the first companies to release an adjustable heel. Today, several companies sell similar ankles, along with foot shells with split toes so that women can wear sandals, and Lacey said it can make all the difference. "It does make you feel more disabled when you can't even have the option to wear a pair of dressy shoes if you want to go to a friends wedding," she said.
Hoover says the engineers at College Park learned several lessons from creating heeled ankles. When they first released their foot with an adjustable heel height, they only made it up to a women's size ten. But soon they were getting complaints and requests for much larger sizes. "We're up in Detroit, and down in Texas cowboy boots are a big deal," Hoover said. Men who wear heeled boots was a niche that he would never have thought of, because he simply never encountered it before. Now, College Park makes the foot in bigger sizes.
For upper limb amputees, the aesthetic struggles are similar. Women's shirts can often dip lower than men's, revealing harnesses and straps. "You can't have a harness go across the chest because they don't like the way it looks and how it rubs against their bra straps," said Miguelez.
And, just like the big feet Lacey and other had to deal with, the hands that companies make are often sized for men. The first set of microprocessor hands—devices in which the speed and motion of the hand is controlled by a computer chip, rather than physically—were too big for most women. "A female couldn't wear it, unless they wanted a giant hand on there," said Havlik. Even now, companies unveil their large, male hand first. The female hand is always the second priority, and often doesn't get made. Of the three most popular high-end hands out there—the Michelangelo, the bebionic, and the iLimb Ultra Revolution—only one, the bebionic, has released a female size.
Finding a usable, comfortable hand can be more than an aesthetic issue, too. For both men and women, one of the biggest challenges with an upper limb device is learning to control a prosthetic hand. In many cases, they can't really feel how hard they're grasping—they must rely on visual information to figure out whether they're about to grasp a water bottle or crush it. That's fine when it's a water bottle, but less fine for breastfeeding mothers who are trying to safely hold their children.
After finding and fitting a device, women's struggles with prosthetics continue to diverge from men's. Women tend to have more variable bodies, and gaining and losing weight can change the way a prosthetic socket fits. Pregnancy can totally throw off a woman's center of gravity, and the weight gain associated can mean going through several different sockets. "One mom I think we went through 6 sockets," Havlik told me. In a paper on a 2010 panel for female amputees, Christine Elnitsky, a researcher at the University of North Carolina at Charlotte, describes one woman who had both an upper and a lower limb prosthetic who decided to switch to a wheelchair while pregnant and nursing because she didn't trust her devices to hold her or the baby. "That's the worst thing for blood pressure, for edema and hypertension. You want them up and walking," said Havlik.
Even delivery can be complicated by an amputation. In the Disabled American Veterans report, the authors note that "for women with above-the-knee amputations who need a caesarian section, a higher abdominal incision should be planned to avoid irritation by the socket brim."
But simply making a smaller, lighter prosthetic isn't easy. You can't just shrink the whole thing down and expect it to work the same way. "From an engineering perspective, the smaller you go on motors and mechanicals the price for each one goes up exponentially," said Miguelez. Most companies are only going to invest money in that kind of engineering if they know they're going to make that money back. "The Defense Department can throw a couple of millions at a computer controlled knee, that's not a big deal to them, but that's a big deal to us," Hoover said.
But even the Defense Department isn't willing to throw all that much money at developing a female sized prosthetic. Right now, DARPA is developing two prosthetic arms, the DEKA Arm and the Modular Prosthetic Limb. Only the DEKA Arm is FDA approved, and is currently being tested by the VA. The Modular Prosthetic Limb, developed by Johns Hopkins, requires more advanced neural interfaces, and is still in the research phase. Both only come in one size.
"We've known the one hand size is suboptimal, but the DEKA Arm is a very expensive piece of medical technology that's proving very difficult to get deployed," said Brian Schulz, a program manager at the Veterans Health Administration Office of Research and Development. "As much as we would like to have multiple sizes of hands, it's going to be a lot of work to get the one hand out. It's unfortunate that it doesn't fit everyone, but it's kind of a logistic and manufacturing problem."
All this said, things have gotten much better for women in the last ten years. Despite all the roadblocks and funding concerns, some companies are starting to create products for women. The College Park heel height foot is a good example. Ossur has been a leader in female sized legs for years now, and some companies are starting to bring women on as consultants to help them better understand women's needs. Bassett works for Ossur, the company that makes the famous Cheetah blades. Lacey's organization is a part of Hanger.
Prosthetists are giving their feedback too. Both Havlik and Miguelez say that they're in constant communication with prosthetics manufacturers, telling them what the women they see need. "I'm not the quiet one," Havlik said, laughing. "I tell them I need a smaller hand. 'This is ridiculous, this is awful. Who would wear that. Nobody wants to put that on, no woman should have to put that on.'"
And now that more and more veterans are women, the Veterans Association is beginning to include them on their research into prosthetic devices. "If there weren't any female veterans who had prosthetics, then there would be no reason to do research on that. But there are now," said Schulz. In studies on the DEKA Arm, researchers at the VA specifically oversampled women compared to the female veteran population to make sure they were getting their feedback.
It's possible that we're entering an age when the military no longer drives the innovation. Some of the most recent design innovations have come not from DARPA but from companies and amputees themselves. Playing with the potential of the human body has become a pastime not just of military engineers, but of body hackers, computer programmers, designers and roboticists. And while much of that is out of touch with what the average amputee needs, it's also driven less by a male-centric view of who an amputee is.
Having a limb that fits and feels right isn't a matter of vanity. Everyone I spoke with, from prosthetists to amputees to researchers, told me that prosthetics aren't just about finding an arm of a leg that functions. Having a prosthetic that feels like a part of your body isn't just about being able to walk or grab again, it's about really feeling like the equipment fits, that it's really part of you, that it's giving you back what you lost. Every time it doesn't, every time that joint is a little too tall or that foot keeps you from buying the shoes you want or doing the activity you want, is a reminder of disability, a reminder of limitations.
For Lacey, having feminine options makes a huge difference. "I haven't worn high heels for 12 years, now I'm able to wear really fun shoes," she said. "A normal person wants to be able to have the ability to wear cute heels or going out shoes, and I haven't been able to do that for a very long time. Everybody always comments, 'oh wow you wear cute shoes, you have this on, I didn't even know you could do that.' You can now!"
Correction: This story originally stated that the "only prosthetic in development at DARPA is the DEKA Arm." To clarify, the DEKA Arm is the only DARPA prosthetic in development that has FDA approval and is being tested by the VA. Johns Hopkins's Modular Prosthetic Limb also receives support from DARPA as part of the agency'sRevolutionizing Prosthetics program, but does not yet have FDA approval. The story has been updated accordingly.