Last week I watched a student at USF I’ve been meeting with defend her architectural thesis. The project was a library designed for the blind community in Miami. She did a beautiful job in so many ways, integrating thoughtful details into the buildings, doing great research, including awesome participatory research at the Lighthouse. And her work subverted the expectations of the review in a way that I think a good architectural thesis often does.
A comment from Andrew Stone, one of her other advisors really stuck with me.
“What’s really successful, in a broader sense than this project, is that you’re thinking really critically about how to understand an experience that’s very different from your own. I think the methodology you used for doing that—the people you reached out to and the research you did—was very successful in that sense. I think that’s a skill that will serve you very well in architecture. It’s something that’s not very common. But you were trying to understand people who would be occupying your space, and thinking in terms of visual impairment, but it’s really applicable, I believe, to any type of different experience. We’re all different people, and the ability to listen to people and design based on their needs is a really important skill that you demonstrated with the trust you’ve been able to build. I think it’s a beautiful project, and i say that on Zoom where I can’t really see the building. But because of the trust you built and your listening I would trust you with a building even not being able to see it."
Lately I’ve been turning over some of the taglines and orthodoxies that come from disability activism in regards to design. One of them is conversation around the words we use to connect design and disability such as design “for” and design “with” disability.
“For” in these conversations often is used to represent well-intentioned, misguided designs for a population the designer doesn’t understand. It represents design the reinforces the designer’s ableist beliefs, purports to fix or cure disability, or unintentionally reifies stigma.
I believe designers should bring people we work with into the design process, of course. I believe design “with” disabled people is often not enough. Design “by” disabled people sometimes leaves me feeling flat. I love work that moves through disability to rethink assumptions that I thought were fundamental to the world we live in, in a way that wouldn’t have been possible without disability.
At the same time, we design “for” other people. There’s no escaping that. Design involves relationship building. I think joining with different perspectives is what allows disability expertise to intersect with other bodies of knowledge that benefits us—design expertise being one of them, even when it’s not created with disability in mind at all. We can pick up tools that weren’t designed “for” us at all and use them in unexpected ways. We have seen often in earlier moments that disabled people have had enormous creativity reclaiming and appropriating things, some of them things originally used to harm and stigmatize them, things that come from military science or eugenics.
And at the same time I think of Lauren A. Taylor’s position that true partnership means being willing to “change and be changed in ways that we cannot predict,” something different that ultimately involves a very high level of trust.
What does it mean to ask of well-meaning, or maybe even ill-intentioned relationships: what could trust look like here? Having a nuanced position on trust allows for allows for flourishing, and is a protection against entities that keep us at a comfortable distance and then us in the PR campaign, or extract our expertise and sell it back to us. Knowing what trust means helps us understand when not to trust too.
Here are a few thoughts on what trust means for me:
For me signs of trust are not only seeking out the most privileged people in the community; not expecting model disabled citizens who are high achieving, amicable, just the same as everyone else except for the fact that they happen to be disabled. It It can mean thinking beyond monoliths, assumptions, and categories and engaging with us as whole people.
Trust looks like being willing to create friction on our behalf, in a way that challenges and ultimately benefits the institutions we enter into. So often we just snap back to the tame version of an idea, but I like when things get pushed as far as they can go. Trust is being willing to have conflict so that we can actually negotiate and go deeper into our shared needs and desires.
And finally, it means being able to share deep desires for a different world, a quote below from an old journal:
_“It is when the creative sparks created by the friction of misfitting are allowed to catch and grow into large, ambitious creative projects. Design “through” disability is the way that we cultivate desire for disabled life, flourishing, invention, and expertise with significant value. Design “through” disability is not overcoming, though it may garner respect from non-disabled people in ways that they are not able to distinguish from overcoming. Design “through” disability is design that comes by embracing disability, not being averse to it, having real curiosity towards it and seeing its genuine strengths in someone who is living it. It is what Mia Mingus called “magnificent” and Alison Kafer called “a future that desires all of us.” The more stigma we face, the harder it may be to achieve this type of self-embrace, or receive this type of embrace from others. It is a fantasy of mine, but it is also not magical, mystical, or inspirational, it is simply a way of thinking that is closed off so tightly that its absense fosters a strong desire for it to exist. A crip future may be one in which this is so commonplace that it does not seem radical at all. Nonetheless, at present we are in a position to desire and appreciate it.” _