Disability Visibility and Erasure at #SXSW

The annual South by Southwest® (SXSW®) Conference and Festivals “celebrate the convergence of the interactive, film, and music industries. Fostering creative and professional growth alike, SXSW® is the premier destination for discovery.”

I got a chance to interview SXSW attendee and panelist Liz Jackson about her experiences at several disability-focused events including one titled, “End of Disability?”

FYI: link to a Storify of tweets about this panel and its title https://storify.com/SFdirewolf/endofdisability-at-sxsw-um-no

Why were you at SXSW? How have you enjoyed the experience there overall?

 

I came to SXSW for a panel called ‘Inclusive Design in an Exclusive Industry.’ I decided to stay on a few extra days so I could see Lawrence Carter Long’s panel and Jenny Lay Flurrie’s panel. The experience has been quite wonderful to be honest. Mostly I am spending time with friends, meeting people I’ve long dreamt of meeting, and attending a small but impactful series of disability panels.

Tell me about the panel “The End of Disability? Neurotech’s Future Frontier,” the overall themes from the discussion, and your reaction.

 

I attended ‘The End of Disability?’ without knowing the title at the recommendation of a friend. Miles O’Brien is someone I have long dreamt of meeting. My friend was under the impression that this would be a panel about his phantom pain and it sounded interesting. His phantom pain didn’t come up until the last five minutes.

Miles moderated the panel featuring Dr. Ali Rezai, Dr. Chelsea Kane and Paralympian Jennifer French. I wish I had taken notes of the event, because much of it is a blur. But it was a doctor-led conversation about NeuroTech and disability. I recall one interaction between Miles and Ali where they mused about a disability free future, replaced instead with bionic people.

There is one moment that perfectly sums up the entire panel. When Jennifer was given the opportunity to speak, she pulled a walker on stage and I just started shaking my head because I knew what was coming. And yes, there was a collective gasp when Jennifer, a paraplegic, used nerve stimulation to stand. Voila, the end of disability. But here’s the thing. When the panel ended, a group of men came to the stage to lift her off. I couldn’t believe it. I attended a panel celebrating the end of disability. And yet, it occurred to nobody to plan for her current needs and provide a ramp for her wheelchair.

I saw a video on Facebook of your question during the Q&A portion of the session. What did you want to express and do you think anyone in the room ‘got it’? What was the response from the panelists and audience members afterward?

 

I mostly wanted to express my disappointment to Miles O’Brien. He has such an opportunity to represent the disability community. But during the panel, it felt to me that he simply wanted to represent a community that he wishes to eliminate. I spent much of the panel wondering about the plausibility of his endeavor… is it possible to represent a future nothing?

The panelists were polite in their response. I have video of Chelsea’s response if you’d like to see it. Jennifer spoke up and used the example of the Deaf community rejecting cochlear implants, though it felt to me that she saw it more as a hurdle to advancing and securing funding for NeuroTech.

After I spoke, a man with Parkinson’s said he agreed with me and that something didn’t feel right to him about the panel though he couldn’t put his finger on it. And after him, a mother spoke about her disabled son saying there’s nothing wrong with him, that the world’s the problem. So it felt that what the panelists put into the room and what the room wished to say in return were two entirely different things.

Afterward a woman who represents Miles confronted me. It was a ‘how dare you’ interaction. I kept asking her what she was trying to say, but she was lost in playing the role of protective parent. I had the chance to speak with Miles afterward and he was initially friendly. Lawrence Carter-Long even stopped by and I felt that Miles was going to start making efforts to immerse himself in disability community – a community he says he views himself as representative of.

One of the things Miles kept saying was that he didn’t pick the title of the panel. And this frustrates me, because I also joined my panel late and insisted the the title of my panel be changed. I was so touched when I discovered that they changed it to ‘Inclusive Design in an Exclusive Industry’. And when the moderator of my panel, Catherine Kast of People Magazine asked her first question, it was about language. My request clearly left an impression on her and it found its way into what we discussed.

After some final goodbyes (including two stiff handshakes and a stare down from Miles’ rep) we took off. Not long after, he responded dismissively on Twitter. I can’t help but wonder if it came from him or from the woman he was with.

 

What are the challenges in confronting the medical model of disability that you see everyday at events like SXSW?

Even though SXSW is committed to diversity, they clearly position engineers, designers and doctors as the disability experts. While SXSW markets itself as a leader in diverse thinking, they are clearly mirroring society in failing us to ask who we are, what we want and what we need. I am feeling deeply conflicted; there is a small group amazing disabled people here, we’re so thrilled to be in one another’s company, but our reach doesn’t go beyond our small (yet deeply empowered) community. I suppose we could be anywhere, so why SXSW? We may be a better fit for IDEO or another creative, immersive, ideation institution.

Technology is often seen as this shiny sexy tool that can erase disability without any consideration of the consequences. There are people with disabilities who want to be fixed and cured. How do you personally balance those tensions in your life as a disabled person in terms of healthcare and developments in science and technology that can improve your life?

 

My motto is ‘Fix Things, Not People’. I spoke at SXSW last year, on a Diversity in Tech panel. Before I went on stage, a group of women spoke about their experiences. They said there are efforts to diversify tech, and while happening very slowly, efforts are increasing the amount of women in tech. After the women spoke, a group of black people spoke saying the same thing. Efforts are slowly increasing the amount of black people in tech. And after they spoke I had the chance to speak. And what I said was yes, tech is slowly making efforts to diversify, and while are making slow efforts to increase the amount of disabled people, tech companies are actually de-diversifying disability through their technological innovations. This is the paradox of disability and technology.

My work and my ideas aim to provocatively break assumptions. I am someone who wishes to dispel the notion that disability must equate charity. And it can be frightening for the disability community to hear that because clearly many of us survive on charity. But what I say is my ideas aren’t the only way… but also not the only way are the doctors, teachers, parents, engineers and designers who have always spoken for us and our ‘best interests’.

Anything else you want to share about how things can improve moving forward on disability diversity and culture, especially to the organizers of next year’s programming at SXSW?

 

Before I went to this panel, I was hanging out in a woman’s lounge. Diversity and inclusion are big themes at SXSW and there are clear demonstrations of that commitment. But when I discovered that this panel was called ‘End of Disability’, I couldn’t figure out how it didn’t raise any red flags for anyone involved in SXSW. Given that none of the disability panels seem to have been promoted or elevated in any way, that basic accommodations were not accounted for, I now believe SXSW needs to hire disabled leaders in next year’s planning. Jillian Mercado was on the panel before mine and she was late due to a lack of accessible cabs. I asked over and over for an ASL interpreter or audio descriptions for my panel and that didn’t happen. I haven’t seen one panel with audio descriptions.

I attended Jenny Lay Flurrie’s panel “Unlocking Technology for People with Disabilities” today (was awesome). Jenny is the Chief Accessibility Officer for Microsoft, she is Deaf (and hilarious). Also Deaf was her co-panelist KR Liu from Doppler Labs. Jenny brought an interpreter with her. The interpreter sat in the front row facing her. During the Q&A session, a woman took the mic and said she had been at SXSW all week, and Jenny’s personal interpreter was the first she had seen. I still have yet to see captioning or an interpreter facing the room. And yes, there were other hearing impaired people at Jenny’s panel… I know this because I saw hearing aids and one guy self identified when asking a question.

Lawrence Carter Long says “Nothing about us without us”. I hope SXSW takes this advice next year.

Post Script: Liz Jackson found another panel at SXSW 2015 on bionics and the ‘end of disability’: http://www.popsci.com/sxsw-2015-how-extreme-bionics-will-help-rid-world-disability

About

Liz Jackson is the founder of the Inclusive Fashion & Design Collective, an ecosystem of products, ideas and people who prioritize the exception rather than the rule. Our mission is to increase the impact of beautiful, functional products in our everyday lives and in the global economy.

After a chronic neuromuscular diagnosis in 2012, Liz began to wonder why her eyeglasses were fashionable when her cane and all other assistive products were stigmatizing. The IFDC supports designers and retailers in the making and marketing of products for all needs.

Twitter: @elizejackson @IFDC

[Header image description: Image of four woman sitting behind a table at the ‘Inclusive Design in an Exclusive Industry’ panel at SXSW. On the far left is moderator Catherine Kast from People Magazine. Next to Catherine is Izzy Camilleri of IZ Denim. Next to Izzy is Carrie Hammer, fashion designer. And finally Liz Jackson, mid thought, hand blurred in movement and purple cane at her side. If you could see under the table, you would probably discover Liz accidentally kicking Carrie over and over.]