When amputation happens, it is an un-ignorable event. After the surgery, the person learns how to be an amputee, they learn to conceptualize their altered body. This work belongs to the inner world of the amputee, their bodily experience, and to the attitudes and environment around them. Many amputees will adopt a prosthesis. However, the journey of choosing, training on, and incorporating a prosthesis into one’s practice and identity requires the amputee to imagine future bodily experiences and knowledge. Much of this imagining happens in unfamiliar and mediated settings: in doctors’ offices that are also hi-tech device shops, or in meetings with other prosthesis users.
In 2017 during my dissertation work with American civilian amputees, I interviewed Tina, a petite above-elbow amputee in her 50s. Tina lost her non-dominant arm in a boating accident. When Tina was in the process of acquiring and training for her first device, her prosthetic clinic facilitated a meeting with another amputee and prosthesis-user. This would be a psychological turning point for Tina. “I was worried when I was going to meet another amputated person. And when I met her, and she came in and she is pretty, and her hook is bedazzled, and I thought ‘Ok, I can do this.’ She was like,… she gave me, like…it just wasn’t the end of the world, when I saw how she handled it. [Because]… at first it felt like the end of the world. I had people telling me you aren’t going to be able to do this, or you aren’t going to be able to do that. I felt like I was going to have to not do anything anymore. And when I saw Lisa I knew that wasn’t true.” Here we see that a prosthesis on another person creates an image of competence and confidence. Meeting another amputee is a source of worry and concern, but meeting a (bejeweled) prosthesis user creates new positive and enabling feelings for Tina about her future.
During my research process, I learned that the role of a prosthesis wearer is difficult to navigate because it requires the input of multiple other actors to obtain and understand the device. A prosthesis is chosen in concert with one’s prosthetist, and one’s insurance. One learns to use the prosthesis, first, by training with myoelectric sensors at a prosthetic clinic. As an example, for upper extremity amputees the process is usually done with a disembodied forearm that is fixed to a table with the amputee then being hooked up to sensors. The patient practices stimulating the muscles and nerves in their residual limb to make this arm move, or to make the hand/hook open or close. Later after the prosthesis is approved by insurance, made, and delivered, the amputee works one-on-one with an occupational therapist to further train with the limb and the myoelectric sensors in order to learn the new bodily geometry that the prosthesis imposes. The knowledge of how it feels to use a prosthesis cannot be embodied by the individual until an expensive and permanent decision has already been made, until they already own a prosthesis. Instead, the amputee is asked to imagine the abilities and purpose of a prosthesis. This act of imagining can be powerfully affective, as when Tina sees Lisa: she sees Lisa, with her prosthetic, as pretty, confident, and capable. It is Lisa’s presence, Lisa as a model of what Tina’s future could look like, that encourages Tina to see both her amputation, and the wearing of a device, as a possible and positive future.
Tina’s journey to obtaining her first prosthesis is filled with multiple fittings, doctors’ appointments, training for almost a year in the clinic for how to use the myoelectric sensors, and surgeries to reshape the residual limb. However, an important cause of anxiety for her was how to choose a prosthetic and which one to choose. According to her, during one appointment, her doctor gave her a prosthetics catalog to look through, which she found useless. Without being able to see how someone would use different types of hooks, or someone to explain how two myoelectric elbows were different, that catalog was just a bewildering list with pictures. This question of “What do you want?” came up multiple times throughout her interactions in prosthetic clinics and with physical and occupational therapists. At one point she responded: “I mean, I got really confused when they asked me ‘What do you want?’ I have no idea. I never thought I would have an amputation for one thing. And I still have no clue what I need.” Ultimately, after being asked multiple times what she wanted, and even after meeting with Lisa, Tina’s first prosthesis was chosen for her by her prosthetist.
To a medical anthropologist researching prosthetic technologies and their users, Tina’s continuing bewilderment about how to answer the question of what she wants does not seem out of place. Firstly, a prosthetic with myoelectric components can cost anywhere between $20,000 and $120,000. A “good” insurance policy will cover 80% of the cost, leaving the future user to cover the remaining 20% (Resnik et al. 2012). With these costs in mind, the pressure to make the “right” decision when choosing a prosthesis is overwhelming for many amputees because you only have one chance to receive an affordable option. Additionally, insurance companies almost always reject prosthetic claims the first time around, thereby considerably lengthening the amount of time before someone receives their prosthesis. Getting insurance approval for a second limb or an additional attachment only increases in difficulty.
Secondly, the question of “want” is asked in a medical environment. It is filled with doctors and specialists in white coats and scrubs, and front office people who take your health insurance card—and, it is a shopping space. This location is where one is habitually diagnosed by an expert in a doctor-patient relationship, but in this process, it becomes a site where the patient is asked to choose unfamiliar objects as a consumer. Being asked to act like a consumer in a space that is visually and habitually coded as medical generates confusion in the amputee. Due to the inequality of status between doctor and patient, asking amputees to have desires and state the different device components that they want is in tension with dictating a want to a medical professional, who can also recommend a surgery to reshape a bone or rearrange nerves.
In addition, as I observed in my fieldwork, choosing prosthetic components can be difficult. This is particularly in the USA/Global North context in which “hi-tech” prostheses are more common, meaning that amputees are more likely to wear prosthetic models with at least one myoelectric component (Joint News Release 2022). For example, an above-elbow amputee has to select: an elbow, a forearm, a wrist, and then a terminal device. All these choices lead to more choices. Should the elbow be body-powered with cables and a harness or myoelectric? Should the forearm be made of carbon fiber and look cyborg-like, or have a skin-colored silicone glove? Do you choose a hand or hook? Which model of hand, which type of hook? The array of options is a lot to take in. These choices are also difficult because the doctors usually ask the patient/consumer to imagine the implications, proportions, and weight of these devices, largely through promotional YouTube videos or printed catalogs.
When Tina first met Lisa, she remembers: “She brought a bag of arms with her, and I had no idea there were so many attachments! It’s like a vacuum cleaner! It was almost shocking when she started pulling out different attachments for her arm.” Lisa, by the way, was not a random amputee chosen for Tina to meet, she was the clinic’s parent company “chief of patient experience.” She was a life-long below-elbow prosthesis user and is a prosthetic influencer of sorts; she doesn’t pay for the many limbs that she owns, but is a tester. Her collection of limbs is provided by the company. While Lisa’s presence brought about a significant psychological shift in Tina and helped her to imagine a different future, there were some questions Lisa couldn’t help with. Most significantly, Lisa’s below-elbow prosthesis’ weighed significantly less than a prosthetic limb with an elbow component. This difference in weight and appearance contribute to much higher rates of prosthetic rejection amongst women above-elbow amputees; 80% of women with an above-elbow amputation reject prostheses while men with comparable levels of amputation reject prostheses at a rate of 15% (Biddiss and Chau 2007).
While Tina was mostly pleased with her first prosthesis in that it helped her to do more daily life tasks, there were several things that she wanted to do differently as she was planning her next prosthesis. Even after receiving her first prosthesis, she expressed frustration with the process of figuring out how to know what to want, and she placed great emphasis on wanting to be more involved in deciding what she would receive this time. While she found it difficult to answer questions of “want” in a clinical healthcare space, she expressed a clear desire for a modeled experience that offered embodied information. When I asked her what would have been helpful to her when she was choosing the first time around she said: “I think more [peer] mentoring would have been helpful. I would have loved to have met someone with an above-elbow amputation. You know? The same as me. So, I could have pictured how the prosthesis arm was going to fit me and how I was going to work it. Because when I got my prosthesis, they told me how to use it, but I had never seen anyone using one before, so I had no clue what to do.” What persists for Tina is the question of how to imagine embodying a new device. What information is necessary to imagine a new unknown future?
Biddiss, Elaine, and Tom Chau. 2007. “Upper-Limb Prosthetics: Critical Factors in Device Abandonment.” American Journal of Physical Medicine & Rehabilitation / Association of Academic Physiatrists 86 (12): 977–87.
Joint News Release. 2022. “Almost One Billion Children and Adults with Disabilities and Older Persons in Need of Assistive Technology Denied Access, according to New Report.” World Health Organization. May 16, 2022. https://www.who.int/news/item/16-05-2022-almost-one-billion-children-and-adults-with-disabilities-and-older-persons-in-need-of-assistive-technology-denied-access–according-to-new-report.
Resnik, Linda, Marissa R. Meucci, Shana Lieberman-Klinger, Christopher Fantini, Debra L. Kelty, Roxanne Disla, and Nicole Sasson. 2012. “Advanced Upper Limb Prosthetic Devices: Implications for Upper Limb Prosthetic Rehabilitation.” Archives of Physical Medicine and Rehabilitation 93 (4): 710–17.