Clinical, charitable, and institutional channels serve to weed out isolated, multiply marginalized, independent activists, scholars, and artists—those who may be suspicious of large-scale, centralized approaches to advocacy and the ways they tend to concentrate power. By relying primarily on charities as recruitment channels, Unilever effectively ensured that politically and culturally engaged disabled people were excluded from its research population.
Although Degree Inclusive’s tagline claims it was “built with a diverse disability community,” Unilever did not partner with disabled folks. They partnered with disability charities. It wasn’t until they arrived at a prototype that they invited disabled consumers to test it. The recruitment of disabled “users and testers” is routinely framed as meaningful inclusion, when in fact it is just another way that corporations extract, commodify, and marginalize lived experience while positioning themselves as “doing good” and “leading the way.”
These problems are not unique to Degree Inclusive. In fact, we encounter them routinely within design and branding “for” disability. When companies decide to make something about disability, they typically reach out to whichever organizations have the largest public profile. These organizations are typically charities, rarely disabled-led, and never engaged in disability through a politically and culturally-informed lens. The corporations pursue representational politics and think they are doing identity politics. They are then shocked and dismayed to hear that they’re still doing disability wrong. Then they absolve themselves by saying, “We consulted with people with disabilities, so clearly there’s never any one right way to do things.”
Before I entered the disability and neurodiversity communities, I was a software developer with a “users and testers” notion of accessibility and inclusion. Community was an awakening. We must engage with politically and culturally-engaged collaborators from the communities we serve and hope to serve, not just users, testers, and spokespeople.
If companies seek to “inspire bold action across the industry,” as Unilever claims, they must begin with taking bold action themselves. That starts with two things: expanding the roles they envision for marginalized people beyond those of spokesperson and user-tester; and interrogating the recruitment channels through which they attempt to reach marginalized creators, collaborators, and communities, asking who exists beyond the reach of those channels and why.