We are very excited to announce our designers in residence for the Fall 2020 semester: Liz Jackson and Alex Haagaard of The Disabled List! Both have been working with SVA as instructors at MFA Products of Design, and we are looking forward to fostering a lasting collaboration with DSI moving forward.
The duo kindly took the time to answer some questions about both their unprofessional experiences, and provided a look into how they plan to work with our students to dismantle and rebuild societal expectations of accessibility and equity in design. Take a look below:
How did you get to where you are as designers, what are your backgrounds in?
Instead of professionalizing our personal and cultural experiences of being Disabled, we instead highlight our ‘Unprofessional Experience’. Unprofessional Experience allows us to break free from the constraints of Lived Experience, which retrofits those elements of our lives that hiring processes tend to reject, to conform to a professional gaze. Unprofessional Experience rejects the professional gaze, which is steeped in a privilege that further oppresses already marginalized people.
What happens when you can’t afford to take an unpaid internship? What happens when you’re ‘not a culture fit’? What happens when you have a gap in your resume? Unprofessional Experience values the answers to these questions.
For instance, in creating our bios for SVA, we initially felt that Alex’s bio should highlight their educational background as something that existed before Chronic Illness rendered them unemployable in traditional academic settings. We were joking that the rest of Alex’s bio should be filled with the letter ‘z’, as in “and then I got narcolepzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz
We ultimately realized that humor in this instance would serve to absolve the reader of the very discomfort Unprofessional Experience must create. For Unprofessional Experience to succeed, it needs to cause the reader to question what they value in who they work with, who they learn from and who they regard as knowledgeable. Alex’s bio now does this.
Liz has never taken a Disability Studies or design course. She nearly failed out of school, in a completely unrelated field, on multiple occasions (for reasons she only came to understand upon becoming more visibly Disabled). Liz is now teaching at SVA with the aim of building out a Disability Studies in Design curriculum that lasts and evolves. No resume could account for this until after the fact. But her Unprofessional Experience can.
So instead of being asked what our backgrounds are in, we would like to ask the reader what they value. If they can learn to value our Unprofessional Experience. And if they can learn to value their own. Maybe one day, there will be a LinkedUn for us to share it on.
What will you be doing as Designers in Residence?
We have been experiencing an existential crisis about our roles in design these past few months.
In our work, we advocate for the adoption of Disabled expertise within professional design. At the same time, professional design operates in opposition to our most deeply held values: it positions itself as uniquely capable of effecting social change, yet that change never involves dismantling systems of oppression, including white supremacy, capitalism and ableism.
Design touts its recruitment of marginalized users and testers as meaningful inclusion, yet it’s the marginalized users’ knowledge that is extracted and commodified by professionals who are then lauded for ‘doing good’.
When we are hired to consult, the ways in which we can advocate for radical change is fundamentally limited by our externality, as well as a lack of access to knowledge about internal organizational barriers to change. We are often congratulated for saying something radical by the very people who do absolutely nothing about it. To us, these interactions feel coercive and paternalistic and we have been finding it harder and harder to hold that cognitive dissonance within ourselves.
Alex came across a tweet the other day that was talking about capitalist philanthropy, but it really sums up all the thoughts we’ve been having about design as a field. Written by @LunarRoot, it says:
“Guised as “change,” philanthropy ensures that underlying exploitative or oppressive systems continue to operate & that the elite’s own culpability in the creation of stark wealth inequality & resulting poverty is never addressed. Instead, they’re positioned as “thought leaders.”
At the same time, we wouldn’t be participating as Designers in Residence if we didn’t still believe in some kind of design. We are currently trying to unpack whether that is just denial or whether there is something that is worth believing in (and if so, what that is).
We believe design is good at asking and reframing questions, as well as at envisioning possibilities for how we can do things differently. But those skills need to be directed at the things we currently take for granted as part of our “design ecosystem”, things we accept so implicitly that we don’t bother to consider the ways in which they may be mutable (such as industrial-capitalist time, carceral “justice” and clinical systems of “care”).
We are now focused on ‘Designing Against’ the things designers have been taught to tacitly accept as constraints in their own methodological practices. This is what we will be doing as Designers in Residence. We will be ‘Designing Against’. We will begin to apply design’s problem-solving skills to enacting the futures that Black, Indigenous, trans and Disabled people are already fighting for instead of speculating new futures through a lens of white, cis, abled, middle- to upper-class imagination. And we look forward to working collaboratively with others within SVA who are also committing their lives to this work.
Can you talk a bit about your work at The Disabled List?
At The Disabled List, we engage in Disability as a creative practice. We consult, for the most part unsuccessfully, with large corporations and institutions. In our desire to eventually succeed in a collaboration or consultation, we have chosen to focus on media first. The reason being, when a designer gets a brief around Disability, what’s the first thing they do? They Google it. And the thing that shows up in search results are not Disabled people articulating our experiences, our expertise. Rather, what comes up are brand depictions of their interactions with us. And these depictions create a cornucopia of misinformation that we are then forced to combat.
We created Critical Axis, which is a repository of Disability representation in media, to begin tracking the tropes and trends and pitfalls that brands fall into when articulating their experiences with Disabled people. These videos are never created to reach Disabled people, which means they exploit us. And that’s a foundational trend. Other trends we have identified range from the amount of words a Disabled person speaks in an ad (the more words a Disabled person speaks, the less believable the ad is perceived to be) to the ways background music is used to manipulate the viewer. One trend we are focused on addressing is the way brands announce an initiative and then never follow through on it.
This was first written about in a 2017 piece by Rose Eveleth titled ‘When disability tech is just a marketing exercise’. Since then, we have learned how this dynamic plays out internally. We typically encounter a mid-level employee who has advocated within the company to take on a project or initiative that we are supportive of. As that mid-level employee gains traction internally, the powers-that-be tend to take notice, because they perceive it as ‘doing good’. The powers-that-be then rush to announce the project or initiative, because things that ‘do good’ have a track record of serving the brand. And this is where things fall apart. Once a project or initiative has been announced, the powers-that-be lose interest, because they feel that the only value it held was in the announcement and you can’t announce something twice. The mid-level employee then experiences a loss of traction, resources are reallocated elsewhere, and the project disintegrates. So in our work, we strongly advise the mid-level employee to resist the announcement for as long as possible.
This is one of a myriad of ways in which the stories we tell inform the way design is practiced. And these are the areas we have expertise in and provide support with.
How do you approach design?
We educate about design through Disability theory, specifically three different models of Disability. These are the Medical Model, which initially created Disability through the process of locating it within the body, as something that needs to be overcome. Design approaches rooted in the Medical Model strive to address Disability by normalizing bodies.
This may be an unpopular take amongst our fellow Disabled advocates, but we argue that when applied to design the Social Model reinforces Disability oppressions by locating Disability in society, in the form of barriers. Design approaches rooted in the Social Model strive to address Disability, oftentimes through accessibility efforts, which seek to retrofit a fundamentally unjust society without actually transforming it.
We operate within the Cultural Model which presumes that Disability simply is. And through the process of acknowledging Disability instead of addressing it, we argue that the Cultural Model creates power. And because Disabled people are in power, bodies need not be normalized and accessibility need not be an effort.
What do you have planned for the coming semester with students?
In Disability design, the phrase is oft repeated, ‘design for one, everyone benefits’. This statement is problematic on many levels. First and foremost, this statement is indicative of the erasure of Disabled people in design. ‘One’ is used euphemistically to describe Disabled people, but Disabled people are not the ones who benefit. ‘Everyone’, meaning people who do not identify as Disabled are the beneficiaries. Secondarily, goals such as ‘Design for All’ and ‘Universal Design’ do not account for the various cultures and communities that comprise Disability within a school, a city, or across the globe.
We initially hesitated at teaching at SVA because we were uncomfortable teaching international students. It would be one thing if these students who came to the United States to learn wound up staying here. But many of these students take their learnings back home with them. So why was this an issue for us? Because the Disability we know and teach is a Western construct, and we risked constructing the very form of Disability in their mind that we are trying to un-teach. We did not want to cause harm.
Ultimately we realized the problem wasn’t what we could offer, in terms of our knowledge. The problem was that design methodologies create a ‘way of doing things’ that has no application when it comes to navigating culture. And so we are threading a needle that uses our critical cultural knowledge to teach students that when we are taught ‘how to’ with regards to marginalized cultures, not only is it extractive. It also flattens.
For instance, many nondisabled people have approached us enthusiastically about the Netflix Documentary, Crip Camp. We want to be excited that our colleagues and allies are being recognized, and that some aspects of Disabled culture are being celebrated. But something feels off.
A part of that is that the history and culture that is traced by Crip Camp is often already positioned as the singular history and culture of Disability in the United States, even within many Disabled-led spaces. This is troubling, particularly to Alex, whose Disabled identity and experiences are shaped by a history of medicalized invisibility, rather than hypervisibility. When we see nondisabled people extolling Crip Camp and recommending it to their friends, we see Disability culture being flattened at the same time it is becoming popularized. We see the histories and cultures of invisibly Disabled people, intellectually and developmentally Disabled people, and Black and Indigenous Disabled people being erased from that flattened image.
People will no doubt counter this discomfort by pointing out that no piece of media representation can fully represent a culture in all its multiplicity. And this is true, but it’s also not the problem.
The problem is when a piece of representation of a piece of a marginalized culture becomes tremendously popular with people who do not belong to that culture. Usually, this representation involves people who are relatively privileged within their community and relatively well-connected outside of it. The people who do not belong to the culture watch this piece of representation with a very different level of cultural knowledge and understanding, and a different intention – they are looking to learn, that is, to consume.
They are moved by what they consume and then share it with their friends and colleagues, because it is groundbreaking to them. Because these outside admirers do not know anything else about the culture, and do not necessarily know how to find the missing pieces even if they cared to look for them, this fragment becomes the mainstream image of the culture writ large. And eventually, someone working in a position of power in a creative field, will decide to create some more representation of this culture.
And because statistically, that person with power is probably also an outsider to this culture, their knowledge of it has been deeply influenced by this one fragmentary image. And so the image gets reworked, reframed and repackaged for the broad gaze of the mainstream until the image becomes a meme. And when that meme becomes harmful and the marginalized people harmed by it speak out, they are told that it was never meant to be an all-encompassing representation anyway.
And so our plans for this coming semester with our students will ask them to divest themselves from the methodologies, and ways of doing things, and ways of understanding things that they have been taught. Instead, our students will be asked to reflect on their own cultural backgrounds and apply their own misgivings to themes we have been taught by design to feel good about. This is how ‘Designing Against Innovators’, ‘Designing Against Institutions of Care’, and ‘Designing Against Allyship’ wound up in our syllabus.
Anything else you’d like to add?
Thank you Miya. (Allan too!)