Design isn’t making things better

Design sells itself as the profession that makes things better. But for the vast majority of people, things keep getting worse.

Humanity is barreling toward climate collapse and the global north is placidly tolerating, if not actively embracing, the spread of fascism. Our taxes and day-to-day purchases are funding genocide. Housing and healthcare are increasingly unaffordable and inaccessible, and we respond by criminalizing those who lose their housing and dehumanizing those turn to drugs for some escape from an unbearable reality.

To the extent that change happens within our society, it is driven by the inexorable momentum of capitalism toward accumulation and concentration in the hands of an elite few.

At its most impactful, design is little more than theatre: performing democratization while reactively optimizing the implementation priorities handed down by those who hold the balance of power. Increasingly, it is nothing more than a simulacrum: synthetic users ‘interviewed’ by synthetic moderators, generating auto-notes that are auto-analyzed, to validate interfaces built by agentic design and coding tools.

This raises a lot of questions, with the top one probably being, why even call myself a designer if I feel this way?

Call it naïveté or maybe arrogance, but I call myself a designer because deep down I still believe that design can change the world — that is, if we change how we design.

I believe design needs to become more radical.

Angela Davis pointed out that, “radical simply means ‘grasping things at the root’.” And this is what design needs to get better at.

Design hinges on ‘solving problems’ — characterizing, reframing and defining ‘the design problem’ are the first steps of a design thinking process. But in practice, those steps rarely engage with the structural factors underpinning a problem. Instead, the problem is presupposed by worldviews of the designers, researchers and participants, and by the research questions that are posed to participants.

Where well-meaning design goes wrong

Consider, for example, a digital platform that seeks to make mental healthcare more accessible and efficient for ‘everyone’ by connecting users to the ‘right care at the right time’ (the catchphrase du jour in Canadian healthcare). The platform is a portal to third-party resources for self management, peer support and telehealth services. None of the resources or services are tailored to neurodivergent people, physically disabled people, those experiencing poverty or housing instability, or those experiencing chronic suicidality.

Preliminary design research for the platform observes a group of users who explore it briefly before abandoning it. It attributes this behaviour to an unreadiness to engage with mental health support. These users are dismissed as out of scope for further research in the short- and medium-term.

In dismissing these users, the platform fails to engage with an opportunity to understand what meaningful innovation in the mental health space could actually look like, by neglecting the possibility that users arrive at the platform looking for something different than what has already been offered to them and, failing to find it, they leave. It neglects to consider that there may be a large group of potential users whose lack of access to mental healthcare is not caused by strict lack of availability or by lack of awareness of what is available, but rather by a lack of appropriate services.

It turns away from the problem that is glaringly obvious to members of marginalized communities: that most mental health services, including most crisis services, are not designed to help people whose mental health struggles stem from ongoing material and structural factors — and that the solutions they offer, most often grounded in ideas about self-regulation and personal accountability — can be experienced as deeply harmful. And when confronted with the possibility of a design problem that is more complex and deeper-rooted than it originally imagined, something that requires a slower, more profound reworking of its service offering, it says, we can’t afford to slow down, we just need to focus on the users we can help right now.

And so it reproduces the same service offerings that are already available, targeting the same user groups that are already targeted by the vast majority of mental health awareness campaigns, self-management leaflets and support groups.

This is not an isolated hypothetical but rather a variation on a theme that I’ve watched play out over and over again within social impact design initiatives and health research projects. Well-meaning designers and researchers set out to make a difference — to make things work better. But they often lack a deep connection to the communities they are hoping to make things work better for, and consequently, they don’t know how to identify the problems that actually need solving.

The accepted solution to this problem is to engage people with lived experience (PWLE) of the problem space in co-design processes. When done right, this approach is supposed to empower PWLE to play an active role in defining the research or design problem, as well as ideating solutions. It’s assumed that these PWLE will surface aspects of their lived experience that would otherwise have been overlooked, leading to better-defined problems and better-designed solutions.

In practice, co-designed solutions rarely challenge the status quo of structural inequity. More typically, they offer incremental improvements to existing ways of knowing and doing, or incremental reworkings of popular concepts of innovation.

Co-design isn’t the answer

Some of the reasons why this happens are well-documented. Co-design projects (and similar frameworks like patient partnership) often fail to meaningfully address the power relations that are inherent when PWLE are brought into academic, policy or corporate spaces as representatives of their lived experience. Professional and academic co-designers who are not versed in care work, trauma-informed and equity-centered practice may not realize that to meaningfully empower lived experience partners, they must actively examine and cede their own power within the co-design relationship.

When this doesn’t happen, PWLE may be brought into projects after questions, goals, methods or even solutions have already been defined — leaving them with little to contribute beyond validation of what has once again been created about them, without them. They may be talked over, dismissed or treated as hostile when the lived experience insights they share challenge the assumptions made by professional or academic partners. They may be unfairly compensated or credited because research infrastructure is not designed to value lived experience equally, and no one has done the work to find loopholes that might enable citational justice and fair pay. And, when PWLE are engaged to ideate solutions that are ultimately never realized — or that become corrupted into something that damages their community — they experience the compounding harms of exploitation and institutional betrayal.

There are other, less thoroughly examined problems with co-design. There is the fact that getting to speak on behalf one’s own lived experience is itself a function of privilege. It requires, first of all, access to the personal and professional networks that surface these opportunities, which presents a chicken-and-egg problem. If most co-design opportunities are surfaced through networks that self-organize around co-design projects and the institutional settings through which they are carried out, how does anyone without a connection to those institutions gain entry?

Lived experience is also not synonymous with criticality. Having participated in many co-design processes in a ‘lived experience’ role, I have often been frustrated by how willing other PWLE are to endorse the status quo of an oppressive system in exchange for a seat at the table. Pointing out this dynamic as a PWLE is taboo too — the system insulates itself from structural critique by reminding PWLE who point out how power shapes discourse that no one can speak for anyone else’s lived experience.

However, in another example of the power relations ingrained in co-design, my role as a professional and academic designer confers an authority that makes it much easier to say the following: co-design projects rarely surface radical, structural criticisms. As a professional and academic designer, I can get away with saying that this happens because co-design projects are themselves designed, and their design rarely accounts for epistemic injustice.

Epistemic injustice refers to limits on what kinds of knowledge society holds as valid, and who society decides is able to have that knowledge. Two main types of epistemic injustice are recognized, and both of these are at play when we do co-design.

The first is testimonial injustice, which is when people’s knowledge is called into doubt because the knowledge they hold is viewed as less meaningful than the knowledge held by other groups. Within co-design processes, we see this kind of injustice enacted when PWLE are dismissed or invalidated by professional partners. We also see it play out more subtly in the reframing of PWLE’s analyses of their own lived experiences as ‘stories’ — structural critiques are minimized when reframed as personal narrative. Testimonial injustice experienced outside the co-design setting can also have impact within it. People who have experienced negative consequences for sharing their insights in the past may withhold them later unless care is taken to demonstrate that sharing will be safe.

The other major type of epistemic injustice is hermeneutical injustice: this is when society denies people access to language or conceptual frameworks to describe their own experiences. The most common example I see of this in my work as both a patient advocate and healthcare designer is when people internalize the individualistic rhetoric that is advocated by capitalist health systems — such as framing clinically invisible illness as primarily psychobehavioural. Or framing the consequences of health inequity as, well, primarily psychobehavioural. When people are only ever exposed to the idea that certain problems are individualistic, they will be much less likely to imagine solutions that are collective or structural.

Co-design rarely produces radical innovation — not because ‘users don’t know what they want,’ but because user-engaged design upholds lived experience as a means of suppressing lived expertise. That is, it invites users (certain users) to ‘tell their stories’ and ‘imagine new futures’ without taking care to build the kinds of spaces and processes through which all stories can be told and all futures imagined equally.

Making design more radical

When I say that design must become more radical, I mean that it must become more insistent about engaging with the root causes of the problems that it names. The processes of exploration and reframing that are foundational to design thinking must become oriented around the normative beliefs and practices that structure societal injustice and constrain user choice. User-led design processes must proactively cultivate lived expertise by providing the space, language and safety for participants to critique the systems they live within and to imagine meaningfully different ones.

Perhaps most importantly, institutionally-affiliated researchers and designers must reimagine their own roles within the design process. Instead of archaeologists excavating social phenomena and futurists reinventing the world, they must become advocates, co-conspirators and hackers. Instead of designing for optimized solutions within the constraints of an oppressive system, they must design against it, by leveraging their roles within it to identify strategies to dismantle, bypass and subvert its structures.