Expressive Prosthetic Design

Norbert Nathanson was born in 1926 without a right hand and with his feet not fully formed. He learned to walk using special shoes, but his reduced stature and altered gait pattern were pronounced, and ambulation was always uncomfortable and often excruciating. In his 2013 memoir, A Secretly Handicapped Man, he describes his lifelong struggle to fully participate in a society with little acceptance of difference and disability. Despite a lifetime of experiencing disadvantage and overcoming obstacles, his matter-of-fact narrative lacks bitterness and includes passages of deep introspection with no attempt to cause pity or place blame.

After elective bilateral transtibial amputations at the age of 34, he experienced a five-and-a-half-inch increase in height, relatively pain-free ambulation, and the ability to move through the world without an obvious mobility limitation. Having experienced decades of mistreatment and discrimination because of highly visible disabilities, his goal was to go unnoticed, and for the rest of his life he maintained a strong commitment to hiding his differences as best he could. His son recalls being instructed at three years of age to not tell the neighbors about his father’s prostheses. He and his sister “were constantly reminded that we were not to talk about my father’s secret…. Modern advances in medical science provided him a new façade…. Artificial legs and feet normalized his height, gait, and appearance, and facilitated a privacy he had never known….With disabilities now hidden, he did not venture to share his story, fearing that disclosure could invite return of discriminatory treatment he had previously experienced.”¹ The transparency of his writing about the mundane and intimate aspects of his life contrasts dramatically with the private way in which he lived it.

Design Priorities

Most prosthetic design decisions focus on the restoration of comfortable function, with aesthetic characteristics receiving less attention, a prioritization that is both reflected in and influenced by the payer policies. These attitudes and policies persist, despite research demonstrating that the appearance of a prosthesis can impact function and participation in specific activities. Nathanson’s attitude toward swimming reflects the thought process of many prosthetic users when considering how and when to reveal their disability: “I was not disposed to go swimming in any public place. I was liberated with my new legs, but not ready to exhibit them. Rather, I was disposed to hide them and to ‘pass.’ I was so relieved at no longer being the subject of stares that I actively maintained my anonymity so as to not engender the unusual interest that had plagued me for so many years. I could not bring myself to wear shorts….”¹ When considering patient needs and goals, the line between function and aesthetics can become blurred.

To focus exclusively on the protective role of prosthetic covers is to ignore important aspects of how users of prostheses experience life. A prosthesis is more than a medical device designed to improve mobility, and like any other item we use or wear, there are factors other than function that determine its meaning and use. Different patients prefer different designs, and have different reasons for choosing similar designs, and their reasoning often goes beyond our most superficial assumptions about their motivation. Attempts to disguise a disability could be interpreted as denial or vanity, but this can hardly be considered the reasons for Nathanson’s choice. He had spent decades living with highly visible disabilities and overcoming the significant social and vocational barriers associated with them. Realizing that prosthetic intervention provided more than just the ability to overcome structural and functional barriers, he chose to reduce the barriers of negative public perception and stigma in the way that was most appropriate for him. Each prosthesis user uniquely perceives his or her condition and the associated barriers, and the visual form of the prosthesis can be an important factor in that perception.

In interviews with seven prosthesis users in England and Greece about how they felt about their prostheses, how their amputation affected their lives, and how the appearance of their prostheses made them feel in social situations, Vlachaki et al. confirmed that disparate rationales influence prosthesis users’ opinions about covers.² Motivations for choosing a realistic covering included reducing unpleasant reminders of the illness (cancer) that necessitated the amputation, concern for how attention to the prosthesis would affect the patient’s children, having a shy and introverted personality, and concerns by one patient’s mother that a visible disability would increase the patient’s vulnerability to muggers. Individuals may choose not to wear a cover because aesthetics is not a priority, or they may make that choice because they want the prosthesis to be noticeable as a way of challenging negative views of disability.² Practitioners must understand the unique perspectives of each patient when making prosthetic design recommendations and decisions.

 Expressive and Emotional Design

All products are designed to meet multiple consumer needs, since consumer preference for a particular product is based on more than its functional characteristics. While a master’s candidate in fashion and apparel studies at the University of Delaware in 2013, Martha L. Hall, PhD, published a literature analysis describing a framework for what she termed expressive prostheses, and applied concepts of the FEA Consumer Needs Model to prosthetic design (Figure 1).³

“This model states that a consumer product should fulfill the end user’s functional, aesthetic, and expressive needs…” and helps us understand a prosthesis as more than a functional item with aesthetic properties.³ “Expressive needs relate to the symbolic and psychological aspects of dress. They refer to how well a product communicates our sense of self: how we view ourselves, essentially our identity, and how we want to present ourselves to others.”³ Hall applies these principles to prosthetic designs that “are neither solely functional nor cosmetic, but fashionable.”³ Rather than hiding a prosthesis to avoid negative attention, expressive coverings draw attention to it and the underlying disability. According to Hall, “By wearing something that highlights the embodied source of stigma, the prosthesis user is reclaiming and redefining the disabled identity by promoting pride and positivity of the non-normative body.”³

Stefania Sansoni, PhD, studied the aesthetics of prosthetic devices at the University of Strathclyde, and has suggested that prostheses should be understood not only as a medical device, but as a creative product.⁴ According to Sansoni, design can highlight “the visual aspect of the devices as a factor connected to the emotional impact in prosthetic users.”⁴ Emotional design refers to the reality that “everything that we see evokes some kind of emotional response…. Love, fear, acceptance, sadness, friendship, happiness, satisfaction—these are all valuable emotions, each may be evoked by a designer, either intentionally or not, in the design of a product.”⁴ Sansoni points out that “defining prostheses as an emotional product is particularly appropriate considering that this kind of device is strictly related to the body image of a person with a physical impairment.”⁴ She uses the term robotic to refer to prosthetic coverings that do “not try to fake the resemblance of the lost limb,” have visual aspects that are “clearly nonrealistic and aesthetically elaborated,” and are “aimed to revise the image of prostheses from medical products to visually appealing products.”⁴

 The Meaning of Prosthetic Covers

In Vlachaki et al.’s research about how the aesthetic design of prostheses affected users, the prostheses were defined as functional (FP), realistic (RP), or expressive (EP).² Participants identified which type of prosthesis they owned and which they wanted. Despite the small number of participants, the various motivations they expressed for preferring different designs can inform our understanding of similar choices made by patients we work with. The authors report that for some, the decision to not wear a realistic foam cover stemmed from their “confidence with their limb absence and consequently, their ‘new’ self. Participants had the impression that the poor design of their realistic foams increased their stigmatization, indicating they were ashamed of themselves. Therefore, as long as participants felt confident with the amputation, they preferred using their FP without any covers to show they did not deny their identities as amputees by trying to imitate their normal limbs.”² Interestingly, “All participants, regardless of their perceptions toward the importance of aesthetics, pointed out that the appearance of EP was improved and more attractive than RP and FP.”²

Participants reported different reasons for having or wanting an expressive prosthesis, including managing their own embarrassment at how people looked at them and “‘to make the general public feel better’ in order to reduce pity toward people with limb loss, and not necessarily because individuals need to feel better about themselves.”² One participant reported that when wearing a prosthesis that looked like a medical device “people subconsciously connected his amputation with other disability problems (e.g., mental), which resulted in his marginalization as people considered he was incapable of socializing.”² He also reported “that with his RP and FP, people understood that he wore a prosthesis; however, they did not talk to him, as they were afraid of saying something offensive, whilst EP helped people realize that he felt confident and comfortable with his limb loss. Thus, they approached him more easily.”² On the other hand, two participants reported that an expressive prosthesis that drew attention to limb absence “might also increase stigmatization. People could perceive it as an effort by them to overshow their confidence with their appearance and thus, dislike and disapprove of it.”²

These perspectives underscore the point that decisions about the visual characteristics of prostheses are deeply personal and are based on many factors related to how a person views themselves and others. They also highlight the necessity of avoiding assumptions about which design a patient will prefer or the rationale for their choice.

Offering Choices

In a 2015 article, Sansoni et al. reported on interviews conducted with four lower-limb prosthesis users and five prosthetists in the National Health System (NHS) in the United Kingdom.⁵ All prosthesis users reported that they had not been offered a choice regarding the visual aspects of their prosthesis, and the prosthetists confirmed that this is common practice. In addition to budget restrictions and the limited number of options available through the NHS, these researchers concluded that prosthetists did not offer patients choices because “being an expert of prosthetic appearance is not a task within their working duties.”⁵ The authors concluded that the absence of an expert in visual design is a weak point in the prosthetic design system, and suggest including “an aesthetic prosthetic designer in the public system” to provide more options to patients.⁵ It is unclear how, in a system that already limits options due to budgetary constraints, paying additional professionals could be considered a viable option. It seems reasonable to expect that prosthetists, who routinely discuss functional design features with patients, are capable of presenting aesthetic options as well.

In a paper published earlier this year, Lee et al. reported on a survey of 104 prosthetists and 28 prosthesis users in the United States regarding “aspects of prosthetic prescription and fabrication, users’ perceived level of engagement, and self-reported outcomes.”⁶ More than 75 percent of both prosthesis users and prosthetists reported that cosmetic options were offered as part of the prosthetic delivery process. “Patients who were offered at least one cosmetic design option reported significantly greater satisfaction than those who were not offered such an option. Patients’ level of satisfaction regarding the look of their prostheses was significantly correlated with their perception that their prostheses empower them in daily activities.”⁶ The authors concluded that offering patients a choice in the aesthetic design of their prosthesis supported their autonomy, and that this “can be easily achieved by engaging patients in the design process of their prostheses….”⁶ This research also confirmed the relationship between aesthetics and function by finding that “the perceived level of empowerment from their prostheses was significantly correlated with their actual prosthetic usage time and motivation to wear the
prosthesis.”⁶

 Closing Thoughts

It is hard to imagine Norbert Nathanson choosing an exposed endoskeletal design or an expressive cover for his prostheses if those options had been available in 1960. It is likely that the experiences of the first 34 years of his life and the prevailing societal attitudes toward disability would have influenced him to choose the aesthetic option that most effectively disguised his disability. We have come a long way in reducing negative stereotypes about disability and encouraging self-expression, and it is intriguing to consider what aesthetic or expressive option Nathanson would choose if he were making that decision today. We have the privilege of improving the experience of our patients by informing them of their options and guiding them toward the aesthetic design that meets their needs most effectively.

 John T. Brinkmann, MA, CPO/L, FAAOP(D), is an assistant professor at Northwestern University Prosthetics-Orthotics Center (NUPOC). He has over 30 years of experience in patient care and education.

 References

1. Nathanson, N. 2013. A Secretly Handicapped Man.
2. Vlachaki, A., A. MJ. Paterson, S. C. Porter, and R. J. Bibb. 2020. Exploring users’ attitudes towards prosthesis aesthetics in the UK and Greece. Design for Health 4(1):4-23.
3. Hall, M. L., and B. T. Orzada. 2013. Expressive prostheses: Meaning and significance. Fashion Practice 5(1):9-32.
4. Sansoni, S., L. Speer, A. Wodehouse, and A. Buis. 2016. Aesthetic of prosthetic devices: From medical equipment to a work of design. In Emotional Engineering Volume 4, 73-92. Springer, Cham.
5. Sansoni, S., A. Wodehouse, and A. Buis. 2015. A new design system of below-limb prostheses-The role of a visual prosthetic designer. 351-360.
6. Lee, SP., C. Mitchell, and K. Repayo, et al. 2022. Patient engagement in cosmetic designing of prostheses: current practice and potential outcome benefits. Prosthetics and Orthotics International 10-1097.