I advocate for the recognition and adoption of lived and embodied expertise within professional and academic design. At the same time, I struggle with how that recognition and adoption often leads to exploitation. Design gets called inclusive when it recruits marginalized users, testers and "codesigners." But these people do not receive the same benefits from their participation as the professionals who extract, commodify, and receive credit for their knowledge. The professionals who lead and facilitate a design process typically receive:
- stable income
- "valid" professional and technical experience (i.e. something you can put on a resume and have taken seriously)
- demonstrable research and/or design outcomes to put in their portfolio
- power to influence project agendas and priorities
Marginalized one-time participants receive none of these things. So for designers and researchers who sincerely want to support and empower disabled people, the question is: what changes can you make to your design (and hiring) processes, to address these disparities?
Community-Centered Hiring and Recruiting
One way that codesign practices could meaningfully benefit their marginalized participants is by rethinking how recruitment and hiring takes place. In design as in so many other fields, recruiting and hiring-both for permanent roles and for research participation-happen largely through personal, professional and local networks. And this means that "disability inclusive" design processes are biased by their overrepresentation of certain disabled perspectives, while they systematically exclude some of the most vulnerable disabled people with some of the most important experiential knowledge.
To be someone who gets invited to things in disability design, scholarship and activism, you have to be someone who cultivates your own network. You have to DM with people regularly and have conversations that aren't about a specific task or project. You have to gossip about other people. You have to be in group chats. You have to write blog posts and go to events that don't pay so maybe you'll get invited to do something that does pay later. All of this is specifically inaccessible to people who have energy-limiting chronic illnesses and whose neurodivergence makes navigating the nuances of unstructured social interaction physically painful.
When designers and academics branch out from their personal and professional networks to recruit, they typically do one of two things. Either they recruit via local community organizations or they go through big disability charities. The limitation of local community organizations is that, well, they’re local. Local to most universities and agencies and companies with in-house design and research teams means urban. And that means disabled people living in rural and suburban areas, who often end up living there specifically because they are too impoverished to afford to live in the city, are systematically excluded from disability engagement.
Meanwhile, large-scale disability charities seem appealing because they can afford SEO which means they're easy to find, both for professionals and prospective participants, they have good name recognition and wide reach. But most disability charities have a very conservative way of thinking about disability. A lot of them place emphasis on improving diagnosis in specific ways that reinforce clinical power dynamics instead of challenging the ways we think about and do diagnosis, on finding new treatments without addressing how many existing treatments are just totally inaccessible to people or the power dynamics that lead to certain conditions being underresearched, underrecognized and undertreated, on fundraising to make very showy contributions to a very few disabled people rather than advocating for systematic changes that will support independent living.
And these are just the mediocre charities. There are also charities that block the people they purport to represent on social media when those people question their research agendas or the transparency of the financial records. There are the charities that collaborate with tech companies to conduct eugenicist research oriented to the "treatment" (that is, eradication) of a neurotype, and who provide directories for what is essentially conversion therapy for Autistic children.
If you look at the leadership of these charities they are always dominated by white nondisabled people from professional backgrounds. When they have "patient advisory boards," those are almost uniformly white and economically privileged because those boards don't pay. And impoverished, multiply-marginalized disabled people cannot afford to be giving their incredibly limited and energy away for free because they are already using all of it just to try and survive.
So the alternative model I propose to designers trying to find a better way to do things is this: hire a couple of disabled people as outreach coordinators. They should be disabled people who are politically engaged enough to be connected to small grassroots organizations, to be aware of current and ongoing issues within disability communities and how those need to be reflected in design research questions and recruitment profiles for research participants. And I don't mean political in the sense of electoral politics but in the sense of understanding that disability is political and politicized and collective, not just neutral or individual.
Over time, have these outreach coordinators build a stable pool of similarly politically- and community-engaged disabled consultants who you can turn to on a recurring basis as new projects and new research questions come up. Those consultants will provide you with a critically-informed perspective that will be connected to trends and power dynamics and issues of concern within their communities. And their insights will be more useful than recruiting "users" for one-off engagements over and over, because they will be tailored to the specific organizational and design constraints you are dealing with, because over time these consultants will become familiar with your organizational culture and processes.