Finding My Amputee Brethren

I remember vividly the first amputee I met after my amputation. Driving down with my spouse to Wake Forest from our small college town so that I could get more chemo, we were at a rest stop. I had only recently received my first “test” leg and hobbled along, with atrophied muscles from months of hospital stays and general exhaustion. I was tired from both from chemo and a dark funk.

As I crutched out of the women’s restroom, a man with the distorted mirror image of my own body faced me, coming out of the men’s room. We were leaving at the exact same time, neither of us moving very quickly. He had shorts on and a prosthetic leg on his right leg. I had on a capri-length skort and a prosthetic leg on my left leg. At first, so focused on my own leg as I walked, I really thought I was looking at a mirror, watching my reflection limp along. He smiled at me, breaking the mirror image, and we stepped to the side.

I do not know his name — I don’t think we exchanged names. So glad to see someone else like me in this one significant way, what I remember is this: he wore a baseball cap and had lost his right leg below the knee and half of his left foot during Vietnam. He felt like the half-a-foot was more of a nuisance than the below-knee amputation. He regretted that he couldn’t wear sandals like the Tevas I had on both my feet. His shoes were white sneakers. I felt so lucky that this man recognized me as someone like him. I was so new at being an amputee with the additional baggage of my illness — bald, exhausted, crutching everywhere, feeling like my chemo treatment would never end, not having energy or hope to consider too far into the future.

But, here we were, just bumping into each other on a pee stop somewhere between my house and Wake Forest. No big deal. We were both out and about, finding camaraderie in the mundane challenges of finding adequate footwear. I got back in the car, somehow with a smile, during the most soul-crushing time in my life. We hadn’t spoken but a few minutes.

People often talk about amputees as inspiration. If it’s not some sappy meme meant to inspire me (to do what, anyway?), then it’s in-group communications about what amputees should be to other people. It’s not uncommon to see an amputee check in to an online amputee group “to give inspiration” by posting videos of working out, or “by sharing their story” of overcoming their new state of body. Inspiration should constitute something more than a quick snapshot of a moment. As an academic in Science and Technology Studies, I have so many questions about bodies, action, technology, and identity. To me, these posts seem out-of-context without larger stories about people’s lives and thoughts about their relationships to technologies.

My physical recovery involved doing activities I enjoyed again — and that never was running! Instead, what meant the most to my recovery included going out for lunch with my sister, getting a little work done, checking in with students and colleagues, talking about work, having tea parties with my kids, laughing about leg-related puns with my long-suffering pals. It involved doing less glamorous activities too — folding some laundry, figuring out how to set up the shower so that I could bathe easily, cooking food one-footed with a walker, getting kids ready for bed. Recovery wasn’t about overcoming my body, but learning to work with it in its new configuration and do the things I had before.

To be told by a stranger in a grocery store that I’m “such an inspiration” for just standing around and picking out corn irks me to no end.

My body doesn’t exist to inspire others, and I resent the idea that it should. My body should serve me; it should be mine to determine its meaning and narrate its life with me. It rubs me wrong that my job as someone with a leg amputation is to take up running to encourage (shame?) two-leggers into exercise.

There’s more to life than being physically “fit.”

My friend Cynthia and I met through our mutual prosthetist’s office. She’s a New Englander who sounds like it — both in manner of speaking and in salty language. When she laughs, her whole face alights. Her laugh comes out thick from being a former smoker; it’s hard not to laugh with her. She’s frank and not one to hide behind social camouflage. It’s a relief to sit with her and be able to just be authentic.

Her leg was cut off 15 years ago — after many failed surgeries on her right knee. The amputation initially meant more activity for her, not less. She’s an above-the-knee amputee, a world of difference from those “below-knees,” which can be pronounced just like “baloney” if you are saying it properly.

My prosthetist is very special: he takes the hard-to-fit cases, and people travel from all over to see him. Cynthia lives about an hour from his office, but I travel four hours there, and often stay for a day or five when getting leg work. Her first prosthetist was a swindler who never got her fit right and then billed her insurance and left her in a lurch. She has followed up with complaints, but the creep is still in the business. Our prosthetist is a real gem, though. Because he sees hard cases and because he’s a master craftsperson who trained as an engineer before turning to prosthetics, a “nuts-and-bolts guy” as he calls himself, he sees just a few patients a day.

I felt like he scheduled her visit so that I could have a new friend of the right sort. Cynthia and her daughter Christina, who is around my age, got straight to the fun during our mutual visit — swapping stories and working on some dance moves. It’s hard to know which people will mean the most to you until you know them.

I knew that Cynthia was someone I desperately wanted as a friend when she leaned over to me and muttered, “below-knees think they’re hot shit.” She’s not wrong — at least not about some of them. The amputees you see the most running races, posting workout videos, and performing stupid human tricks — and posting all the time with messages of triumph in our mutual amputee networks — are mostly below-knee amputees. (This is not to say that all or even most below-knees have it easy, though!)

I would have been an above-knee amputee, but they took my lower leg and put it on backward so that my foot serves as my knee (a rotationoplasty). My physical recovery and therapy took so long. My bones took extra time to fuse due to chemo, and it just took so damn long to be permitted to bear full weight on my leg. I don’t know if Cynthia sensed my frustration with the whole process — or how our community could be — but the relief I felt in her expressed exasperation with the “baloneys” among us was immediate.

A general rule is that the more you have, the better off you are. This is true, for the most part, for success in using a prosthetic limb — arm or leg. Though there might be some advantage in having a below-knee to a partial-foot amputation, below-knees are generally better off for prosthetic wear than knee-disartics, who typically fare better than above-the-knee amputees. It’s better to have a long residual limb than a short one, where prosthetic wear is concerned. And then there are people with high above-knee amputations, hip disartics, and hemi-pelvectomies, whose prosthetic wear might be more difficult — or require an extremely skilled prosthetist.

For some adaptive sports, this advantage seems to shift in the other direction. It’s rare to see below-knee amputees dominating in amputee soccer. All that extra leg seems to get in the way, and below-knees often spend a lot less time on crutches than higher amps do.

Not all amputees go to a prosthetist’s office — or at least not regularly. Though I associate the prosthetic clinic with community and new friends, the people who are at these clinics pursue prosthetic limbs — or a better fit in them.

Mallory Kay Nelson does not see a prosthetist. She uses forearm crutches. Or she uses a custom wheelchair. Or she lays on a dance floor and flaps to the music. Or we just sit in a restaurant and giggle until it hurts, my leg and her crutches standing watch next to us against a wall.

Mallory, a board member of the Society for Disability Studies and long-time disability advocate, trained as a costume designer, certified in millinery — though I’ve seen her in a do-rag but never a hat. She’s lived in LA. She was part of some YouTube web series, playing a one-legged character named Lana. Her inside forearm features a tattoo of a self-portrait of Frida Kahlo, whose boobs she can make shake for you if you want. She can sketch, floor dance, take a set of six stairs in one quick fluid move of her crutches and body, and consume an uncountable number of liters of Diet Coke each day. She’s basically a living folk hero.

Mallory has the most liberating ideas about being an amputee. We are the same age, but she is my elder in amputation. A hemipelvectomy amputee since age 14, she has the least possible leg on which to hang any prosthesis; she has no residual limb. A leg, for her, would need to be belted on — and would be quite heavy to have a hip joint, knee joint, and ankle all strapped on.

She has this idea that she calls ‘transmobility,’ which I want her to write about for Disability Studies Quarterly. Transmobility is the idea that some disabled people — like us amputees — actually have wider options in terms of mobility than the rest of the population. For Mallory, she could strap on a leg (as she has at other junctures in her life), crutch about, or roll around with a wheelchair. She asserts, rightly, that these are all valid ways to get around in the world, valid ways of being in the world. And we might be able to imagine others as well.

Preference for devices shouldn’t be matters of value judgment, though some in the amputee community act as if you aren’t really trying if you aren’t pursuing prosthetics. Personal preference in terms of movement and adaptation should be valued and accommodated.

But then Mallory badmouths the rolling walker that I use at night! Yes, walkers aren’t stylish, but I make it work! And she makes me laugh.

I have her Skype into a class I teach on Technology and Disability each year. She shares her sketches of a body like hers with different mobility devices. My students speak with her about mobility technology, infrastructure, and normative bodies. It’s one of my favorite days.

We’ve hit the Amputee Coalition conference together and plan the same this year. She stinks up my car with Funyuns as we drive together. The Funyuns are the worst thing about her, but she offers to share.

When I think about becoming an amputee — really getting comfortable with it, sitting with it — these three people come so vividly into my head. One is still a stranger, the other two are good friends, but all with different ages and levels of amputation. These amputee elders mean so much to me. These three served to anchor me as a new amputee, orienting me in my body and community.

What I needed to recover and to come to terms with my updated body were belly laughs, friendship, swearing, and understanding — not memes that asked me for my excuse or stories of people who marathon on carbon fiber. I needed amputee brethren, not amputee inspiration.