Ragen Chastain, our Inclusion and Accessibility Manager for this year’s Lean Startup Conference, spoke recently with Liz Jackson, an advocate and consultant and founder of The Disabled List, who will be presenting at the conference on Designing with Disability.
We created Ragen’s role to further our long-standing efforts to make sure the conference is open to all. A lot of important initiatives fall under her purview, including creating a diverse group of people at every level; creating ticket levels, scholarships, volunteer, and livestreamopportunities so that money isn’t a barrier to participation in the conference; and creating a comprehensive Accessibility and Inclusion Guide and enforced Code of Conduct that make our values and expectations clear. In addition, Ragen is in charge of outreach to affinity groups and organizations for people who are typically underrepresented in order to find speakers, sponsors, and volunteers. We want a conference that welcomes and centers the voices of those who have been traditionally marginalized and excluded, including People of Color, disabled people/people with disabilities, LGBTQI people, and women. Diversity makes events and organizations better because amazing ideas and innovations lie outside of our own experiences, and people from different backgrounds can teach one another new approaches to problem-solving. We want to be a part of building a future where diversity, inclusion, and accessibility are expected, celebrated, and affirmed.
We’re on the path and moving forward with purpose, but we know we have plenty of work to do. That’s why we have an open door policy, as well as specific opportunities, to provide feedback on how we can improve our efforts. If you have thoughts or suggestions, please e-mail Ragen at: [email protected]
The conference is sold out, but you can still register for our free livestream:
Meanwhile, here’s Ragen and Liz’s conversation about Liz’s work on disability design, how she came to it, and more–including some thoughts on Stephen Hawking.
Would you start by telling us a bit about yourself, and how you got started working with disability and design?
On March 30th of 2012, I woke up to a new body. That was when I began to understand my lifelong relationship with disability. I never knew it, but I had always had a relationship with disability, and it wasn’t until I had the clarity of a drastic change in my body that I realized what it meant, for me, to be disabled. To everyone around me, that meant that I had lost the ability to choose my body. But it wasn’t the change in my body that pained me–it was that I could no longer choose products and narratives that reflected my identity. For example, why do I have so much choice with eyeglass frames but absolutely none with canes? I first set out to resolve this frustration by creating an organization that would provide more choice in the marketplace; I was going to design more canes. But what the last six years have taught me was that this is not a simple problem requiring a simple solution; it’s a profound lack of infrastructure that keeps oppressive models of disability in place.
How are you tackling that problem?
Even though I have no formal design training, I am now the founder of The Disabled List, which is a disability-led, self-advocacy organization that is creating opportunities in design; be it through product, branding, marketing or other creative fields. I fundamentally believe it’s my lack of formal education, and the ways I’ve hacked my knowledge that have put me in this unique position to reassess the status quo. The life of a disabled person is spent cultivating an intuitive creativity — allowing us to re-form a world not shaped for our bodies. Disability ingenuity is responsible for omnipresent designs such as the bicycle, touchscreen technology, and cruise control. Through integrating specific, disability-led ways of knowing into design pedagogy and practice, The Disabled List advocates for a future as yet unimagined.
Why is it important to design with and invest in disabled people rather than simply creating solutions for disability?
The presumption that disabled people simply want to be fixed or that only we want things fixed is wholly inaccurate. Sure, sometimes we want those things. What we really want though, is to participate and to be truly seen–meaning accurately represented–in society.
Your question makes me think of an ad that made the rounds on social media when Nike signed their first disabled athlete. It wasn’t even 4 seconds into the video, when Nike described marathon runner Justin Gallegos as someone who suffers from Cerebral Palsy. On World Cerebral Palsy Day! Their word choice of ‘suffers’ demonstrates how charities or brand initiatives tend to position our bodies as a tragedy so that they can either raise money or bolster their bottom line.
As the ad progresses, the viewer grows aware that Nike is going to surprise Justin at the finish line with a contract. The entire narrative struck me as preposterous because I had never before seen a sports apparel company or team ‘surprise’ an athlete with a professional contract as a gift. If you Google ‘signing day’ you will see image after image of athletes seated at tables in front of contracts, pen in hand, treated as professionals. The mere fact that Nike felt they needed to market the signing of this particular athlete as a ‘surprise’ or ‘gift’ rather than a transaction tells me that they don’t see him as valuable. They view their charitable gesture as a brand enhancer.
How does your work specifically address that kind of problem?
I’m trying to shed light on the ways disabled people are prevented from participating in design, marketing and investment decisions that presumably should impact us. Had Nike hired a disabled person as a decision maker in the process, I assure you that Justin Gallegos would have been sitting at a table with a pen and a contract, and treated as a valuable signee. Justin should serve as a reminder that this emerging disability market, which is larger than the size of China, cannot be tapped until disabled people are valued at the helm of culture globally.
What about events? How can event planners do a better job of incorporating disability into cultural practices?
Events must prioritize access. This can play out in a myriad of ways, but I’ll use my experiences thus far with the upcoming Lean Startup Conference. In my initial correspondences with Lean Startup, I hedged my participation on whether accommodations such as captioning and transcripts of video and audio content would be made. Lean Startup made this easy on me. Thank you Lean Startup!
I was glad to see how Lean Startup has already incorporated access into its ethos. When an attendee registers for the Lean Startup Conference, they’re asked to complete a registration form which has a box that can be checked if they require accommodations. A representative from Lean Startup then follows up with that person directly to ensure they will have full access to all of the events. I’m increasingly seeing this as common practice for events and hope it becomes the status quo in coming years.
Beyond accommodations, my work is focused on finding ways for disability to influence the culture of these events. How do I ensure that I’m not the only disabled speaker? If I’m the first disabled person invited to speak, how do I ensure that I’m not tokenized and that the door remains open for my disabled peers, either on that same stage or at future events? I now serve on advisory panels for such conferences as SXSW, ensuring both access and opportunities are incorporated.
What other projects do you currently have underway?
The Disabled List started out as a list of creative disabled people who have a background in disability studies and are available to consult. It has been a massive success; people on The Disabled List have been brought on to consult with such brands as Wells Fargo, Google Creative Lab, Volkswagen and more.
Over the course of the last year, I started The WITH Fellowship, which facilitates a process of designing with, rather than for, disability by partnering disabled creatives with top design studios and creative spaces. The first cohort, which started in September 2018, partnered four creative disabled New Yorkers WITH SYPartners, Frog Design, Pollack Textiles and Gibney Dance. Our second cohort runs from February 4 to April 29, 2019 — applications for prospective fellows and organizations in New York City and San Francisco are now open.
I recently came across a quote by the late Stephen Hawking, where he said time and space are finite in extent, but they don’t have any boundary or edge. As I read it, I recalled wondering if he was talking about the universe, or if he was in fact, talking about his disability. At the very least, I felt that his disability must have informed his perceptions of the universe profoundly. As I read it and read it and read it, I began to think about the inherent conflict of Universal Design in disability. There’s this presumption that you can make an object or a system that works, as intended, for every human being on the planet. But disabled people will be the first to tell you that there is always going to be an exception, this is our foundational experience of the world. Nothing is universal. But what Stephen Hawking taught me was that the work we do in disability, while not universal, is expansive. It expands our understanding of humanity. It expands what we have the access to do. And it expands what we have the freedom to pursue. I have found this miniscule pocket in the universe, a black hole if you will, and by letting it consume me, I have discovered the world.
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