Lainey Feingold interviewed Josh Miele at StoryCorps San Francisco on August 21, 2014 for the Disability Visibility Project.
This is the last of two blog posts. Below are some excerpts from their conversation.
On developing a disability identity
LF: Well I was going to ask you about that because I have noticed just in the time that I’ve known you which I would say probably like ten years, it seems like you’re way more willing to be open about the disability part, the blind part, how you became blind, and I know there was an article in the New York Times of a big picture of you, I think it was at a BART station with a picture.
JM: North Berkeley I think.
LF: North Berkeley BART station yeah. So am I right that that was a part of shift, you’re more willing to talk about it more wanting to talk about it?
JM: So obviously, I mean, I’ve been involved with disability and technology and I’ve been sort of very active in the disability community ever since I’ve arrived in Berkeley. I’ve really sort of embraced disability and blindness identity when I got here and realized, “Oh my God there’s this huge community of cool blind people and people with other disabilities” and I realized that I was part of a much bigger picture of disability and identity and history and have never since that time been sort of ashamed of it. I’m really proud to be part of that now as opposed to when I growing up in New York. But even so, I never wanted to talk publicly about sort of how I got burned or any of that because I felt like it was sensationalized. It was too easy to, it’s sort of let’s not talk about how I became blind because that’s just too sexy, let’s talk about what I have to do as a blind person to get an education, get a job, let’s talk about what I’m doing professionally to change the way of doing things for blind people and I think that what shifted for me, I was very reluctant at first to talk to the New York Times, Wendall Jameson, who wrote that article, and I thought this could be a disaster. You know you never trust a journalist to get your story right and never trust a journalist not to sensationalize your story or emphasize the wrong things or use language or framing that you would be ashamed of or embarrassed about in front of your disabled friends and I’ve always sort of been very leery of press and publicity about myself as an individual. But I realized, first of all, I realized in talking to him that he might actually be able to do it in a way that I wouldn’t be embarrassed about. I think afterwards I realized, after sort of my thinking about why I felt finally comfortable talking about my personal story as opposed to opposed to my professional story: (1) I thought maybe this will help me professionally also, and (2) I realized I’ve finally done enough things professionally that the story of how I got burned might not overshadow what I’ve achieved professionally. So I think that I basically was at a point in my career when I felt like I had done enough things that it counter balanced this very heavy violent childhood story of getting burned.
On Berkeley, California as a disabled city and a blind city
LF: Josh I want to ask you about Berkeley because you said that your identity was really shaped by coming to Berkeley. So you came as an undergraduate?
LF: And then you stayed and you got your Ph.D. from Berkeley and I just want to ask you about your Twitter handle because you have a Berkeley identity but you call yourself Berkeley Blink and I thought why did you choose that?
JM: So Blink is one of these words, that I think some of us, some people in the blind community have sort of taking at Backus(?). It is a pejorative word for blind person and it’s something that I don’t really expect other people to use it about blind people but people who are in the blind community use Blink as sort of quick short hand, affectionate short hand for blind people. And Berkeley is a blind city and it’s a disabled city. Berkeley is where arguably the birth place of the Disability Rights movement but blind people have been occupying and living and making Berkeley a blind city for much longer than the Disability Rights movement. The California School for the Blind which used to be for the deaf and blind was in Berkeley from the 19th century on through the 60’s. It was a center for educated blind people and some of the most significant blind people in the blind movement came from Berkeley. Dr. Perry, the infamous Dr. Perry was in Berkeley, Jacobus tenBroek was at Berkeley, the NFB and the ACB both started in Berkeley.
LF: I didn’t know that.
JM: It’s a blind city. There’s a lot of blind history there and so I just feel a very strong connection to Berkeley because I went to school there. I love it there and the whole idea of sort of this irreverent use of this pejorative term as term of identity, I love that too. I believe that taking the words that we use for ourselves too seriously is a sign that we’re uncomfortable with who we are and the whole like “People First” movement, like no blind people refer to themselves as people with blindness. And if they do it’s because they’re not comfortable with their blindness. And the whole calling yourself a blind person, you know would you ever say if you’re rich are you a rich person or are you a person with wealth right?
LF: Yeah, it’s distancing yourself because you have the width.
JM: And I think that interestingly enough the people first language is actually in direct conflict with identity language by saying I am a blind person that’s putting blind first because I’m proud of it. If I put it second, that means I’m trying to hide it. And I’m a grown up now and I’m proud of the difference that I have. I am no longer ashamed of the differences I think they add to who I am.
LF: Well Josh that is a good – we don’t have too much time left – you know we’re recording this as part of a Disability Visibility Project that Alice Wong created and the tag line for the project is Recording Disability History One Story At a Time, so in closing, I just wanted to get your feelings about do you see your work as making history, someone comes upon these archives 100 years from now and we’re not here, what do you hope their take away is and just how does the history thing feel to you?
JM: Well I just feel like we’re at a very special time, a transitional time for people with disabilities. We’re going from a very long standing shame and inability and model of disability that’s to be hidden to a very public model of disability that is inclusive and open. And so I think what I hope people take from this is that this transition is a very exciting time when technology and relationships are changing very quickly and that I went from the Industrial Home for the Blind to an inventor and scientist who stands independently of being blind. I am who I am in addition to being blind and there is a growing number of people in our society who are not in the slightest surprised by that and that’s where the transition really is, is people’s reaction to what a blind person can do. When nobody is surprised any more then we’ll be there.
LF: Josh thank you so much for asking me to do this interview with you, it’s been a real honor.
JM: Lainey, I am so pleased and flattered you were willing to and I am really honored that you did this with me. Thank you very much.
Lainey Feingold is a disability rights lawyer who works primarily with the blind and visually impaired community on technology and information access issues.
Joshua A. Miele is the founder and director of the Video Description Research and Development Center. He is also the Associate Director at The Smith-Kettlewell Eye Research Institute. At SKI his work focuses on the research and development of innovative approaches to information accessibility for blind and visually-impaired consumers.