{"id":189104,"date":"2017-03-14T02:12:47","date_gmt":"2017-03-14T09:12:47","guid":{"rendered":"http:\/\/disabilityvisibilityproject.com\/?p=189104"},"modified":"2026-02-12T17:22:20","modified_gmt":"2026-02-13T01:22:20","slug":"disability-visibility-and-erasure-at-sxsw","status":"publish","type":"post","link":"https:\/\/disabilityvisibilityproject.com\/2017\/03\/14\/disability-visibility-and-erasure-at-sxsw\/","title":{"rendered":"Disability Visibility and Erasure at #SXSW"},"content":{"rendered":"

The annual\u00a0South by Southwest\u00ae (SXSW\u00ae) Conference and Festivals<\/a> “celebrate the convergence of the interactive, film, and music industries. Fostering creative and professional growth alike, SXSW\u00ae is the premier destination for discovery.”<\/p>\n

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

FYI: link to a Storify of tweets about this panel and its title\u00a0https:\/\/storify.com\/SFdirewolf\/endofdisability-at-sxsw-um-no<\/a><\/p>\n

Why were you at SXSW? How have you enjoyed the experience there overall?<\/span><\/h3>\n

 <\/p>\n

I came to SXSW for a panel called \u2018Inclusive Design in an Exclusive Industry<\/a>.\u2019 I decided to stay on a few extra days so I could see Lawrence Carter Long\u2019s panel and Jenny Lay Flurrie\u2019s panel. The experience has been quite wonderful to be honest. Mostly I am spending time with friends, meeting people I\u2019ve long dreamt of meeting, and attending a small but impactful series of disability panels.<\/p>\n

Tell me about the panel “The End of Disability? Neurotech’s Future Frontier,” the overall themes from the discussion, and your reaction.<\/h3>\n

 <\/p>\n

I attended \u2018The End of Disability?\u2019<\/a> without knowing the title at the recommendation of a friend. Miles O’Brien<\/a> 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\u2019t come up until the last five minutes.<\/p>\n

Miles moderated the panel featuring Dr. Ali Rezai<\/a>, Dr. Chelsea Kane<\/a> and Paralympian Jennifer French<\/a>. 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<\/a> and disability. I recall one interaction between Miles and Ali where they mused about a disability free future, replaced instead with bionic people.<\/p>\n

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\u2019s the thing. When the panel ended, a group of men came to the stage to lift her off. I couldn\u2019t 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.<\/p>\n

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?<\/span><\/h3>\n

 <\/p>\n

I mostly wanted to express my disappointment to Miles O\u2019Brien. 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\u2026 is it possible to represent a future nothing?<\/p>\n

The panelists were polite in their response. I have video of Chelsea\u2019s response if you\u2019d 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.<\/p>\n

After I spoke, a man with Parkinson\u2019s said he agreed with me and that something didn\u2019t feel right to him about the panel though he couldn\u2019t put his finger on it. And after him, a mother spoke about her disabled son saying there\u2019s nothing wrong with him, that the world\u2019s 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.<\/p>\n

Afterward a woman who represents Miles confronted me. It was a \u2018how dare you\u2019 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<\/a> 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.<\/p>\n

One of the things Miles kept saying was that he didn\u2019t 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 \u2018Inclusive Design in an Exclusive Industry<\/a>\u2019. 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.<\/p>\n

After some final goodbyes (including two stiff handshakes and a stare down from Miles\u2019 rep) we took off. Not long after, he responded dismissively on Twitter. I can\u2019t help but wonder if it came from him or from the woman he was with.<\/p>\n

\n
\n

Well that's a fucking terrible hashtag. #SXSW<\/a> #EndofDisability<\/a> @DoctorAliRezai<\/a> @ChelseaMKane<\/a> @milesobrien<\/a> @NeurotechNetwk<\/a> pic.twitter.com\/psb4nnatK8<\/a><\/p>\n

— #SayTheWord Liz (@elizejackson) March 12, 2017<\/a><\/p><\/blockquote>\n