Go beyond a user-centered approach if you intend to design for functional diversity
If history has taught us anything, it is that “separate but equal” means more of the first and less of the latter
By Juliana Saldarriaga, Innovation Manager at A Piece of Pie Colombia
A simple but powerful way to end ethnographic interviews with chronic patients and their caretakers is to ask them what they wish they had to improve the patients’ condition. Often, or at least when it comes to chronic conditions that cause physical or mental disabilities, participants dream of a specialized center: one designed around the needs of patients with that specific condition. They envision a facility of some sort where these patients can spend time, access treatment and feel respected and understood.
Seen this way, it is easy to understand why participants believe this would dramatically improve the patient’s quality of life (and that of his or her family too). However, these centers may actually do more harm than good: while a dedicated, separate space allows patients to connect with each other, it also isolates them from society at large — and allows the abled and healthy to further ignore disability. Considering this, intervening existing spaces to avoid isolation might be a better strategy than creating encapsulated and condition-specific centers. “Accessibility must be felt but not seen,” says the foundation director of Musholm, an inclusive holiday and sports complex located in Korsør, Denmark that has been praised by organizations such as the International Paralympic Committee (1). In other words, we should aim for communities in which disabled-friendly is a given, something inherent and permanent in everyday life rather than a medical facility you can pinpoint.
The case of the specialized centers allows me to introduce a broader and more existential discussion: are we as designers and ethnographers prepared to identify these situations, in which seemingly ideal solutions reproduce normalized beliefs and attitudes? I do not think so. Most of the time we are far too focused on identifying users’ immediate needs and addressing them as though these users exist in a void. In this user-centric approach we rarely consider:
- If our design solutions are challenging (and not reproducing) deeply rooted beliefs that may be harmful.
- If our design solutions are compatible not just with the user, but with the broader community — and even the planet.
Without these “checks”, our solutions will never be sustainable, regardless of how well they address users’ needs. And this way, we end up suggesting specialized centers that promote isolation, or feminine hygiene products and ads that address a need for discreteness but perpetuate the menstrual taboo, or even single-used plastic products that address a need for practicality but contaminate, just to name a few examples.
If our user-centered approach is limited in this sense, why is it still such a prominent way to design? There are several explanations for this, but my favorite one is radical and thought-provoking: it is what Colombian anthropologist Arturo Escobar calls the belief in the individual. “The notion that we exist as separate individuals continues to be one of the most enduring, naturalized and deleterious fictions in Western modernity.” (2). Escobar suggests we look at non-Western cultures to understand there are notions of personhood that are “deeply relational”, to the point that individuals do not have a pre-existing identity, but rather build and rebuild their identity as they interact with their context. Thus, a disabled person is not inherently disabled; he or she becomes disabled only when compared to an “abled” person — and this comparison is likelier to happen when we isolate rather than integrate.
Seen this way, it makes sense to turn our user-centered approach into a community-centered one, in which the user’s community (with its social norms and values) weigh as much as his or her immediate needs. There are at least two ways to start doing this, and the first one is to choose our ethnographic object carefully and consciously. In terms of healthcare projects, gone are the days in which a patient journey was solely about the patient. We now know mapping the experiences of caretakers and other stakeholders is just as important to achieve better solutions. Also regarding the ethnographic object, sociology professor Mathew Desmond suggests we always challenge observable categories, taking them as “a curious something” rather than as an absolute truth (3). A few years ago, we conducted a project on juvenile idiopathic arthritis, the most common type of arthritis in children under the age of 16. We decided to focus less on the arthritis itself and more on whether the patient was the eldest sibling or not because this factor affected the way the patient experienced the condition and perceived him or herself. While patients that were older siblings grew surrounded by adults who, while taking care of them, convinced them they were weak and disabled, those that were younger siblings were able to follow their healthy older siblings’ footsteps and thus did not think they were that different from them.
The second way is to go beyond the user’s immediate needs is to involve a broader range of actors in ethnographic studies — actors that at first glance have nothing to do with the study’s objective. Banks are certainly not one of the first actors you would involve in a study on Alzheimer’s disease. However, when you realize patients are greatly concerned about losing his or her autonomy, dementia-friendly banking services sound like an interesting strategy. This is exactly that Santander Bank is doing in the UK (4). With this, they are doing much more than addressing a specific user’s needs; they are encouraging financial inclusion, which is something that will benefit the community in general, not just Alzheimer’s patients. And just as banks are relevant in this situation, in other situations it might be bookstores, supermarkets, public transportation, and many other actors that are not directly involved in healthcare.
Key learnings
- Designers and ethnographers must challenge user-centered design by looking beyond the user’s immediate needs and consider the community and even the planet.
- Adopting this relational approach is relevant to design truly sustainable and long-lasting solutions; what at first sight might seem like an ideal solution can actually emphasize or reproduce deeply rooted societal beliefs that may be harmful in the long-run.
- This is the way to design to disability! A traditional patient-centric approach reveals specialized centers improve quality of life. Instead, a relational patient-centric approach suggests intervening already existing spaces to promote inclusivity and tackle the root cause: isolation.
At A Piece of Pie, we are developing a relational model to make sure our solutions, strategies and prototypes are compatible not just with users, patients and with immediate stakeholders, but with the community in general. This model also makes sure we are not reproducing outdated beliefs and attitudes. Do not hesitate to contact us if you want to learn more about our model at info@piecepie.com!
References
(1) https://www.theguardian.com/cities/2018/feb/14/what-disability-accessible-city-look-like
(2) https://www.dukeupress.edu/designs-for-the-pluriverse
(3) https://scholar.harvard.edu/files/mdesmond/files/desmond.relational_ethnography.pdf
(4)
