Around 2 million people in the United States have had an amputation or were born with a limb difference, and 185,000 undergo amputation surgery each year, according to the Amputee Coalition. No two people’s situations are the same: A limb may be amputated because of an accident, injury, illness, or disease. Other limb differences are due to the way a person’s body forms in the womb, which is sometimes described as “congenital amputation.”
I didn’t know much about limb loss until I interviewed Erin Ball, a circus performer who restarted her career after both of her feet were amputated. Last summer, she organized a week-long camp for adult amputees to learn circus skills. At the end of the week, the group put on a show, which Ball called “a celebration of difference and of community and connection.
“I cried through the whole thing,” she tells SELF.
While covering the event, I talked to several amputees and learned a lot of things the general public may not realize about living with a limb difference—such as why certain questions about their limbs can be pretty offensive, and that amputation can hugely improve a person’s life in many cases. (Note: Everyone quoted in this article identifies as an amputee. More broadly, some people identify as amputees whether they have had amputation surgery or not, while others prefer the phrase “limb difference,” so I’ll use both terms throughout this story to reflect this.)
Here’s what four amputees want everyone to understand about what their lives are really like.
1. Don’t lump the experiences of all people with a limb difference together.
Like any group of individuals who happen to share a specific characteristic, amputees and people with limb differences aren’t a monolith. For example, the experiences of arm and leg amputees are different, as are those of congenital amputees compared to people who became amputees as adults.
“How everyone relates to their particular disability or however they go to label and identify it is different from person to person,” Jason Goldberg, a comedian, actor, and filmmaker from Toronto who was born with a left arm that ends above the elbow, tells SELF.
“It’s changed me a lot as a person,” Erin Ball says of her amputation. “I’ve built a community and just connect with people on a much deeper level than I used to.”
Others don’t necessarily have a before and after frame like this. “I’ve always been this way, nothing has changed,” says Talli Osborne, an inspirational speaker based in Hamilton, Ontario, who was born with arms that end a few inches below her shoulders and missing bones in her legs.
2. Amputees and people with limb differences use different words to describe themselves and their bodies.
“You’ll never hear me call myself disabled,” Osborne tells SELF. “I just say I’m three feet tall and I have no arms.”
“We all have challenges, and I don’t know why we have to obsess over people that are extremely different when we’re all different,” she continues. “That’s what makes the world beautiful.”
Goldberg, however, does refer to himself as disabled and has been corrected by others when he uses the word. “This would be able-bodied people telling me that the language or the words that I use to identify myself are not appropriate, and that I should use words like ‘differently abled,’ ” he tells me. “For me, it’s a euphemism; it’s patronizing.”
Ana Chilakos, a patient advocate from New Jersey who had a foot amputated after injuries from a car accident left her in chronic pain, tells SELF that people don’t always repeat the language she uses, even though they should. “For example, after I establish that I’m an amputee and they call me a ‘person with a disability.’ It almost feels like they have to speak my being a person into truth, or remind themselves that I am a person. I feel it’s redundant because I’m obviously a person!”
Amputees use a variety of words to describe their residual limbs, which is the technical term for the part of an arm or leg that remains after amputation. “Stump,” for example, resonates with Chilakos. She’s planning to get a tattoo on her residual limb—“a tree stump on my stump,” she says.
“When I finally had the amputation, it was almost the idea of cutting off something that was defective, something that was bringing me down,” Chilakos explains. “I don’t see the stump as this dead thing where nothing grows, because my limb is more alive than ever. I can feel a constant phantom energy from where my foot used to be.”
In contrast, the word “stump” makes Ball recoil when it’s applied to her body. She refers to both her residual limbs and prosthetic legs as simply “legs,” she tells SELF.
If you’re not sure which words a person prefers, ask them and follow their lead.
3. If you want to ask a question, remember that amputees are people, not curiosities.
Amputees often get questions when they’re out in public, some of which are pretty absurd. “I was on the subway once and a woman asked me if my kids would also have one arm,” Goldberg recalls, adding that he “was so taken aback.”
It’s OK to be honest and explain that you’re curious or have never met an amputee, Chilakos says. She usually doesn’t mind answering questions—even from strangers—as long as people are tactful and engage with her like a human being. “I’m not a Google search bar,” she adds.
“Sometimes it is annoying and I don’t want to necessarily go into the entire thing, but I don’t mind being quick and saying, ‘You know, I lost my leg, and it’s OK,’ ” she explains.
“What happened?” can be a particularly sensitive question for some, however. “For a while I would answer and then I would feel so horrible,” says Ball, who became an amputee after she got frostbite while lost on a walk in the woods. “These are just strangers and they’re asking me about the most traumatic time in my life, and then they’re just walking away and I’m left with all of these feelings.”
“There are so many better questions, like, How do my legs work?” she adds.
“I always wished I had a better story when I was younger,” adds Osborne, whose limb differences are congenital. To her, “What happened to you?” is loaded with the idea that “there’s something wrong with me,” she says.
Osborne has heard plenty of insensitive questions from adults, but she encourages children to ask anything on their minds so they’ll understand that difference doesn’t have to imply something negative. “Kids just point out the obvious,” she notes.
It’s normal for everyone to notice people who look different, she goes on, but it’s important to adjust how you respond to that difference. “Don’t react to that person like they’re a freaking alien with oozing eyeballs all over them, because that’s how [some] people react to me,” Osborne says. “When they see me sometimes they jump, [like], ‘Oh my God, you scared me!’ I’m not scary.”
4. Amputation can improve a person’s quality of life.
To someone who hasn’t gone through it, amputation may seem like something that inherently limits a person. Many amputees didn’t have a choice about whether or not to keep their limbs. Chilakos says some of the feelings around amputation can be compared to the grief of losing a loved one, or any “sudden loss of something that you thought was going to be there at least until the end of your life.” But for her and other elective amputees, the surgery is a decision that can actually restore mobility and quality of life after a serious injury.
After more than a dozen surgeries following her car accident, Chilakos still woke up every morning in excruciating pain. It hurt even when she wasn’t walking on her reconstructed foot, and she could no longer wear regular shoes. She had to give up her hobby of belly dancing. Ultimately, she decided to have her injured foot amputated so she wouldn’t have to live with the pain, and in December, she celebrated what she calls her one-year “ampuversary.” Her mom got a cake to celebrate. She recently performed with her dance troupe and now has a closet full of shoes.
As a patient advocate, she’s worked with other elective amputees. She tells me that she remembers one person saying to her: “I should’ve done this years ago to save myself from being in so much pain.” Chilakos says, “I wish that more people could hear that that is the opinion of so many different amputees.”
5. Don’t make assumptions about what amputees’ lives are like.
Goldberg grew up hearing other kids say they didn’t know how they’d live if they only had one arm. People have also told Osborne they’ll pray for her arms to “grow back,” even though she’s happy the way she is.
6. It’s OK to laugh with someone if they’re making a joke about their amputation or limb difference.
For instance, when someone asks, “Whose gloves are these?” Osborne likes to say they’re hers. “If I’m laughing about it, you should laugh with me because it’s hilarious,” she says.
Goldberg has a joke about getting all his gloves from the lost and found box. “That’s just my life, but things like that are kind of funny,” he says.
When Ball hosted a circus camp for amputees—which Goldberg, Chilakos, and Osborne all attended—the group staged a performance spoofing various ways people might lose limbs. In one, a group of amputees pretended to be kittens licking another amputee’s leg off. In another act, they drew faces on their residual limbs and made them talk like puppets.
For Ball, part of healing emotionally after amputation was “finding the humor in it and realizing like oh, I can still continue living and my life is actually better now,” she says.
7. Every prosthetic limb is unique.
“It’s almost like a fingerprint; it’s tailored to you,” says Chilakos, who previously worked for a prosthetics company. “There’s so much artistry and craftsmanship that goes into making these legs perfect for every single person…watching the whole process from a plaster mold to this amazing, custom, high-tech piece of equipment that allows people to walk.”
Lower limb amputees might have several different prosthetic legs or feet for various occasions: one for everyday use, one that’s easy to take on and off for wearing around the house, blades for running, or a foot to use with high heels.
As a relatively new amputee, Chilakos doesn’t have a huge collection of prosthetics yet, but she’s got a leg to run and dance on and is looking forward to getting more. “Maybe one year instead of treating myself to a nice vacation I’ll just treat myself to a cute foot,” she says.
8. But not all people with limb differences choose to use prosthetic devices.
Prosthetic limbs are an essential part of life for many amputees, especially those who’ve had feet and portions of their legs removed. But depending on their personal situation, not all people with a limb difference find them useful.
Osborne used prosthetic limbs until she was 19. She liked being the same height as her peers, but it also felt like she was trying to be someone else. “I’ve always felt my most comfortable without my arms and legs on,” she says. “I learned how to do everything with my little arms and my feet as a baby does…and then all of a sudden you take away those body parts and you cover them up with these plastic things, and then I had to relearn how to do everything again.”
But Osborne stresses that “this is totally a personal thing,” adding, “I never ever want to convince somebody to not wear prosthetics or to wear prosthetics.”
9. Amputees want to see their dynamic lives represented in movies and on TV.
Stories with amputee characters often focus on a person triumphing over adversity, and put their limb loss or difference at the center of the story. “I would love to watch a film about, like, an amputee who’s just an asshole,” says Goldberg. “I feel like all we tend to do or get involved in [is], like, inspiration porn.”
Chilakos wants to see more authentic representations of people like her on-screen. Movies like Skyscraper, which stars Dwayne “The Rock” Johnson as a veteran with a prosthetic leg, don’t appeal to her because the role isn’t played by an amputee. “We’re not just a costume.”
10. You can play a role in making spaces accessible to everyone.
To be a good ally, Chilakos suggests, start by listening and amplify the voices of people with disabilities. Take note of the ways in which the spaces you’re in can or can’t be accessed by people who use wheelchairs or have other mobility needs.
Chilakos bought a ticket to a concert thinking she would walk into the venue on her prosthetic foot. But due to an injury, she was using a wheelchair when the date rolled around. She worried the space wouldn’t be accessible and she would have to miss out on the show, but she was pleased to find that wasn’t the case. Afterwards, she wrote a review for the venue online. “I think that it’s important to give them credit and to point out [that] this is the type of place that has my business,” she says.
Osborne, who uses a scooter, says it’s important to ask people with physical challenges what they actually need. “I can’t tell you how often things look accessible to the outside eye and I cannot get in,” she explains. “There’s an automatic door or there’s a ramp, but I still can’t get in because it wasn’t put in properly. No one thought about the actual person using it. The button is right beside the door. Who on earth can reach that if they’re in a wheelchair? And if they can, they push the button, the door opens, hits the wheelchair and closes again.”
You should also observe your surroundings and take note of what’s there, who’s there, and who’s not there. “If you go around and you don’t see people in wheelchairs, it’s not because they don’t want to be there,” Chilakos says. “They’re not there because they can’t be there—because the place hasn’t been made accessible to them.”
Article Credit: Susie Armitage is a freelance journalist based in New York.
Last modified: August 7, 2024
