Season 1, Episode 14 — 10 November 2016
About this episode
We talk with Alice Wong and Andrew Pulrang about their numerous projects, most importantly #CripTheVote and the Disability Visibility Project. We discuss the election, the affordances of online collaboration and activism, intersectionality and disability, and the importance of culture, not just politics.
Be sure to check out their #WhatsNext post-election #CripTheVote twitter chat on 10 November 2016, starting at 7:00 PM Eastern. Visit the Disability Visibility Project page for the event or the twitter feed for the hashtag to find out more.
About the presenters
Alice Wong is a sociologist, research consultant, and disability activist based in San Francisco, California. Her areas of interest are accessible healthcare for people with disabilities, Medicaid policies and programs, advocacy-based storytelling, and social media. Currently, she is the Founder and Project Coordinator for the Disability Visibility Project (DVP), a community partnership with StoryCorps and an online community dedicated to recording, amplifying, and sharing disability stories and culture. Partnering with Andrew Pulrang and Gregg Beratan, Alice is a co-partner of an online campaign called #CripTheVote encouraging conversations about disability issues during the 2016 Presidential election. You can find her on Twitter at @SFdirewolf.
Andrew Pulrang started working at the North Country Center for Independence, a Center for Independent Living in Plattsburgh, New York while in college, rising to serve as the Executive Director from 1998 until 2012. Seeking to explore disability issues in a different way, Andrew started Disability Thinking. You can find him on twitter at @AndrewPulrang.
Donald Taylor is the Membership Manager at TASH and the producer of Amplified.
Transcript
Announcer: You’re listening to TASH Amplified a podcast that seeks to transform research and experience concerning inclusion and equity for people with disabilities into solutions people can use in their everyday lives.
Today we are talking with Alice Wong and Andrew Pulrang about their numerous projects, most importantly #CripTheVote and the Disability Visibility Project. We discuss the election, the affordances of online collaboration and activism, intersectionality and disability, and the importance of culture, not just politics.
Concerned about the implications of the election outcome for people with disabilities? Wondering where we go from here? #CripTheVote will be hosting an election discussion as one of their regular twitter chats on Thursday, November 10th 2016, starting at 7:00 PM Eastern. For more on how to participate, search for #CripTheVote on twitter or go to facebook.com/CripTheVote/.
Donald Taylor: Alice Wong, tell us about the path that brought you to your current thinking and activism.
Alice Wong: Well, I guess, uh, you know, I think it’s always been a gradual process. You know, I grew up, uh, disabled and really started becoming more politicized as a high school and a college student, and a lot of my activism was kind of just, you know, for my individual self, self-advocacy. And then, you know, as I kind of realized that, you know, what I’m doing for myself has an impact on others. So, you know, I got more involved on, uh, you know, campus activities and, you know, just really getting a sense that there’s, you know, broader issues and there’s a larger disability community outside of myself. And the most I connected with that as a young adult. You know, I really started feeling like, wow, you know, we all have power. We all have a voice. So it really kinda, uh, came as a combination, uh, these last two or three years when I started the Disability Visability Project.
Donald Taylor: And what, what was your inspiration for the Disability Visibility Project? What, what goals did you set out for yourself and how did you get started in that?
Alice Wong: Well, I started early on when, uh, you know, it was like a year before the 25th anniversary of the Americans with Disability Act. And as you, you know, very familiar with, uh, a lot of people with the disability community, people were, you know, gearing up, getting ready to, you know, celebrate, you know, really looking forward and looking back and, you know, doing a lot of commemoration of, you know, who we are as a people. And one thing that really bothered me was that there really wasn’t enough disability history out there. And I thought, you know, what are some ways that we could really highlight the full diversity of, you know, uh, our community? And then I went to a Story Corps event in, uh, San Francisco in about 2014. And, you know, story Corps is a national nonprofits that’s an oral history. And they basically did know, wanna celebrate all stories of, and they have, do they have community partnerships all over the country with diverse populations?
And I asked them, you know, Hey, have you ever thought of forming a community partnership with people with disabilities? And they were very open to it. And I thought, Hey, I could do this one year project, you know, in the 2014, kind of in a one year campaign to collect stories, uh, and have them available at StoryCorps and have them archived at the Library of Congress, which is the other upside of StoryCorps is that to anybody who participates to has the option of archiving their story. And the idea of hard driving and having a record of our, of our, of our culture and our history at this particular time period was really exciting to me. So it should have been just a one year thing, and it really took off so that now it’s kind of indefinite and, uh, it’s gonna be a ongoing, uh, collection of, you know, oral histories and also that all the community that really celebrates and creates disability stories or culture.
Donald Taylor: Andrew Pulrang, you’re embarking on a second phase in your career and in your thinking. Tell us about your first phase and what’s led you to upend everything and start something new.
Andrew Pulrang: Well, um, I started out, I mean, I’ve had disabilities all my life. And when I was in high school and really almost all the way through college, um, I kind of had this, the idea that I wasn’t ever gonna do anything in the disability field. Um, I had no real idea of anything. The disability was anything but a sickness or a problem you had, uh, that you dealt with doctors and tried to ignore the rest of the time. Honestly, I really, that was the way I was. And, um, really it was only later in college, I started to get exposed to the idea that there was some kind of a matchup between disability as an experience and politics, which happened to also be a big interest of mine. Um, you know, I was a pretty liberal left wing kind of guy, not radical, but into politics.
Um, and I found that fascinating, but it was, it wasn’t til Wai that I realized that the two could actually go together in, in a interesting way. And so, um, from there I kind of, I kept, I went to graduate school, but then when that was all done, I, I ended up going to, uh, working at an independent living center in my hometown that was just starting up. And I worked there a number of years and ended up becoming the executive director and continued on that for a bunch of years. And pretty soon there was, you know, like 20 or 20 plus years later was still doing it and enjoying it and, and, you know, having a good time with it and doing good work. But I kind of felt like I had done enough at, at one place for a while. Um, various other factors came in, into play that made it a good time to, to go.
There was a some good people there that could take over, and I wanted to explore other aspects of disability work. And really just all I really had in mind was blogging and, uh, doing kind of website stuff, uh, for a time and then seeing what else transpired. And, I mean, and about a year or two after that is when I, well, early on I discovered the Disability Visibility Project. That was one of the first cool websites that I found when I started really digging in and then got to know, uh, Alice and Greg Baran from blogging and doing social media. Uh, and that led to #CripTheVote, which is, which is they say is not something I did not set out initially to say, oh, I want to do like, big time activism, uh, on any sort of scale. I was really, the first blogging stuff that I did was very introspective and on, on my site is called Disability Thinking. And that was literally what I was interested in, is digging into what does it all mean, um, and then getting a little bit social with other disabled writers about what they were thinking about. Um, but it was really great to get involved with #CripTheVote because it also got me back into the political part of things.
Alice Wong: Yeah. And I also felt like to activist as well, mean, there are a lot of people who, uh, you know, I think in previous generations, you know, are just, you know, full time activist, you know, like, you know, doing the right actions, working at the non-profit world. That really wasn’t my, uh, upbringing either, basically, uh, researcher at a university did. I’ve always, uh, considered doing a lot of my research as part of like, you know, a compliment to the kinda activist I’m doing, getting, uh, uh, getting research to the, as of activists to, to use this information to forward their, their accuracy. But yeah, I kind of fell into it later in life as well.
Donald Taylor: What led you, the two of you and your, I guess, third, um, partner Greg Baran to find some sort of, uh, commonality and to what led to your collaboration?
Alice Wong: Well, I guess, uh, the three of us were all friends already on Twitter and Facebook, and I think that says a lot about social media. You know, we’re all kind of doing our own thing, and yet we found each other and we really, I really feel connected to this larger community of people all over the world actually doing some really interesting things. And we all have really similar, not say we all have similar experiences, but we all, you know, relate to one another and see, find solidarity of one another. And, uh, I think that’s what, you know, was the, the foundation for, uh, Greg, I think approach, uh, kept up with the idea for #CripTheVote. Did Askia Andrew and I to get involved? So what do you think, Andrew?
Andrew Pulrang: Yeah, I mean, that’s about how it happened that we were like, just talking about amongst ourselves about the upcoming election and, uh, wondering if disability would ever really come up in a meaningful way. And, um, yeah, I think that was the main motivator. I mean, I, I think, I think we decided that instead of waiting to see if it would come up, we would just go ahead and start talking about it. And, um, you and Greg, I would say on balance, we’re, we’re more familiar with Twitter and how hashtags actually work as a rallying tool and as a communication technique. So, and I kind of said, yeah, that sounds good. Not really knowing fully what it was or how it would work and soon found out.
Alice Wong: Yeah. And I feel like, uh, you know, I think the election was so involved, you know, with the, did a primaries and all, they kinda did a huge number of candidates last fall and, you know, it was just kind of, you know, the bind uping and, uh, you know, it was up until January when we started, it was like, wow, there really wasn’t any substantive conversation yet. So we kind of thought it’s time for us to kinda insert ourselves in a very public way on Twitter to say, Hey, we’re here. This is what we care about, and we’re gonna carry on these conversations. And, you know, people are welcome to join us if they wanna learn.
Andrew Pulrang: Yeah. And actually, I forgot to mention it, I mean, before we did crypto started Crypto Vote, I had already started doing some, uh, writing on the election for, I did a, an article or two for, uh, the Daily Dot and on anticipating the election, and then some columns for, uh, or like blog posts for the Center for Disability Rights in Rochester. So I’d already started looking at and writing about, uh, you know, disability in the campaign, which at that point, as Alice said, it was mostly about it’s absence, you know, and, um, so that informed my, informed me going in as well. Mm-hmm .
Donald Taylor: What are some of the issues that are forefront for people with disabilities in this election that you seek most to address with Crip The vote, both in terms of the process of participation in voting and in the policy sphere?
Alice Wong: Andrew, do you wanna take that first?
Andrew Pulrang: Um, yeah, I think, well, first of all, before anything else, we wanted to, uh, get a conversation going without necessarily knowing what the topics would be. Um, I mean, of course there are certain big ones like, you know, long-term care and, um, actual access to voting, um, uh, employment issues from a couple of different angles that we could have said from the start. Of course, we, we would like these to be dealt with, but, but we didn’t get super specific. What we did do is put up an online survey, um, and ask people to go in and kind of prioritize a whole pass of different disability issues or disability proposals that could be, you know, made by any given politician. Not once it had been, but just out of our heads kind of. And, um, we did get, like, there were, we had over 500 responses and people prioritized the issues they really cared about.
And we kind of used that going forward to give ourselves an idea of what we wanted to talk about. Um, but actually as it turned out, we probably didn’t even need to do that because people, once they started, uh, participating in our chats and on a daily basis, they brought up the issues that were important to them. And again, it, it, a lot of it revolves around, um, access to actual voting. And I think a feeling maybe not so much an issue, but a feeling of, are we even heard, do they even care? Do they even know we exist? Mm-hmm . Before even getting to very specific issues.
Alice Wong: Yeah. And also, you know, we’ve, uh, we’ve opened up our chats. We have a guest host, and that really, you know, uh, transformed and our thinking about the issues, you know, we’ve had, uh, chats about, uh, mass incarceration, poverty, long term services and supports. And, you know, we’ve had people in the community who are born of board knowledgeable about this and who are also on Twitter, uh, share their, uh, share their expertise with us. And that’s been a really great way to kind of expand our dollars, but also, you know, making sure that it’s something that’s, you know, more of a open, uh, open campaign. Uh, so, you know, I think, uh, one thing that, you know, we’ve seen in the last, you know, several years is this, you know, really painful and very real issue of people of color being harassed and brutalized by the police.
And, you know, many of these people, people of color who are killed by police are also people with disabilities. So this is, uh, I think one of the biggest, uh, concerns right now is, uh, you know, this, these twin issues of mass incarceration and violence toward people with disabilities. And I think there’s another thing that’s really important to think about is that, you know, disability is a intersectional issue. That there are people of color, there are women, there are, uh, LGBTQ people with disabilities is that all of their identities are be acknowledged and who they are as disabled people.
Donald Taylor: Between Hillary Clinton’s regular mention of people with disabilities in her speeches and Anastasia Somoza addressing the Democratic convention, the, uh,#CripTheVote achieving the stature that it has. But conversely, Donald Trump’s mocking of Serge Kovaleski offending so many people. Is this a watershed election for people with disabilities?
Alice Wong: Um, I think so In terms of visibility, I think it’s a watershed moment in terms of, it’s never had such visibility in terms of, at the Democratic National Convention in terms of the different ads, uh, put up. I think Hillary Clinton campaign, I think I’ve counted up to at least four videos of that are, uh, ads paid for by the Clinton campaign a featuring people with disabilities or about disability. So that in itself is, I think, pretty unprecedented. But as for, you know, real substantive, uh, the stretches of policies, I’m not really 1% sure if that’s really just happened yet, but that it is a lot of, a lot to be proud of.
Andrew Pulrang: Yeah, I, I agree with Alice. I have the same kind of yes and no kind of ambivalence because, and I think part of it is driven by some people are real policy wonks and some people are not. And you know, it, it, speaking only for myself, I mean, having come from, um, you know, over 20 years of, of sort of in the weeds disability things, there are certain things that I already kind of take for granted and or, or have ex have had expectations for a long time, and when they’re met, things like simple recognition, um, I’m certainly able to see that it’s a good, it’s like, uh, a welcome step, but it’s harder for me, less likely for me to get genuinely excited simply for being mentioned. Mm-hmm. While I think for others it’s genuinely exciting ’cause they’ve never seen it before. Mm-hmm. Um, what I want, what I want is what I consider quote unquote the good stuff, which is policy debates. Right. But I’m also kind of realistic and realize that policy real substantive policy debate is actually pretty rare in almost every field in electoral politics. Mm-hmm . So, you know, and, and you know, it is a step, I do feel like it’s a watershed in some ways. Um, and certainly, um, the potential is there the way it wasn’t, and certainly a lot more than I think any of us thought it would be in early January.
Alice Wong: Yeah. And I feel like early January, February, we started to see a snowball effect with board candidates Were talking about sub of wages, and that was a really encouraging thing that that was a real policy issue regarding, you know, employment of people with disabilities and sheltered workshops and whether they should be paid a bit of a wage or a decent wage. So that was encouraging, but there really wasn’t much else other than that in terms of just, you know, actual policies and plans. But I think, again, you know, trip to vote will definitely continue to, well, after a lecture day, because, you know, that’s what’s been really, that’s what the real world trap is. Once the lecture is over, uh, you know, there’s like cabinet appointments and real, you know, uh, change happening to what the new administration most, I think that’s been, we’re gonna look forward to a lot more of that.
Andrew Pulrang: And I think too, I mean, there’s two other things that I would point out is, um, you know, one, one is that, that, um, Hillary Clinton did have a sort of day devoted to disability policy, um, which might have been a real, a genuine first, you know, it’s something that all campaigns do is they set up calendars for issues and say, well, on Tuesday of this week, you know, whatever we’re, and they announced beforehand, we’re gonna talk about this thing. And often that’s a way that they can highlight, you know, kind of specific policy areas that don’t always come up, um, in the, in the normal course of events. And they did that with disability stuff. And I think that’s kind of an interesting step that might get repeated in the next election, you know, become a thing that you, the thing that they all have to do.
The other thing that I would mention is, um, that I think is going to be easy to forget, but maybe shouldn’t be, is, you know, on the democratic side, there was this whole primary with Bernie Sanders that was an extremely big deal. And I found it interesting to see how that worked out in the disability community. And at least from my point of view, and I, I’m could be wrong in so many different ways, but it seemed like one of the things that happened was that the very, some very, very specific concerns and and questions the disability community had were not ever really answered or addressed by Sanders. And I, I don’t wanna sound too partisan about it, ’cause I, my point in saying that is that I think there are a lot of people that would’ve been more sympathetic to him if they had had a little bit more feedback. Mm-hmm. Um, and I, and again, and I’m not saying that’s because they had bad ideas necessarily, but again, it’s part of that, uh, maybe they just weren’t prepared. They just didn’t realize or think until maybe too late that, oh, here’s a constituency that we really need to pay attention to. Um, which isn’t that surprising again, because of the general state of how dis how disability is still considered kind of this weird boutique issue in politics.
Alice Wong: It’s, it’s interesting that, you know, so many issues that, you know, people don’t see as disability issues, you know, that we see them as disability issues. I mean, did the third and second debate between Clinton and Trump, we saw, you know, the mention of the Obama chair and the a CA and for the people that were live tweeting using Trump to vote, so many people with disabilities talked about the importance of the a CA in their lives and how it gave them healthcare and how, you know, people were saying that it’s no exaggeration. They were saying, you know, I would die if I did not have that, the healthcare under the Affordable Care Act. So, you know, this is something that comes across, you know, a lot of people in terms of accessing healthcare. But, you know, for people with disabilities, it really based, you know, it has a additional dimension in terms of this is a safety as a disability issue. And this is another example of how hopefully candidates in the future can really see every issue from these different lenses and the [inaudible] only certain issues, as you know, uh, you know, pigeon holding us to certain things.
Donald Taylor: There’s a significant national discussion going on about, um, what, what you mentioned earlier about the, oh, the excessive policing of certain minority neighborhoods, excessive incarceration, Black Lives Matter, and then there’s separately a discussion about disability issues, which as you, as you pointed out, tends to focus around issues of healthcare and employment. But something that I consider consistently remarkable is when you look at, say, the Washington Post’s database of police involved shootings in absolute numbers, there are just as many people with disabilities who’ve been shot by the police this year as there are African Americans. And, you know, oftentimes overlap. Do you think that there’s any awareness of the intersectionality of these issues at the level of our, our political discussion? I mean, Hillary Clinton actually used the word intersectional in one of her stump speeches, but I don’t know if that was just a throwaway line.
Alice Wong: Well, I guess, I mean, there’s so many people that we know, or people of disabled, people of color who’ve been working on these issues. People like, you know, Tila Lewis, uh, Leroy B and they’ve been telling these, you know, again and again, they’ve been repeating about this intersectionality and about how anybody who cares about police violence, police brutality, mass incarceration, really needs to take into account the, uh, the lives and, uh, stories of disabled people of color. And I don’t, I don’t see it happening yet in terms of, you know, other dog disabled people really getting it yet. And I feel like this is, you know, just, uh, what we try to do is just try to amplify these stories and amplify, you know, what the work of other people are doing. And, you know, we, you know, hopefully that Ill get out there, but I’m not really sure if it’s really reached, you know, the, the best public consciousness Yes. About looking at, you know, police brutality and, uh, systemic racism a safe way, as you know, how does it affect people with disabilities of color?
Andrew Pulrang: I, I agree. I mean, I think it, it’s, uh, to be honest, it’s, it’s a new concept to me as well. Um, which is another reason I’m kind of glad that I got out of one part of the movement got into another, is to get a different angle on things. And to me, I mean, this, the most striking thing that finally got through my head was this very issue that it’s, it’s so ingrained to talk about, well, not only black people, but people with disabilities have X happen to them and not as if, as if they’re exclusive groups. Right. And they’re, they’re not. I mean, sometimes they are, but they’re not. There is that overlap. And that’s the whole, I, that’s what intersectionality is. And I, I just don’t think there’s enough people who know that yet, or have, they probably know it, but they’ve never actually thought about it in that way. Mm-hmm . And I even, you know, I don’t know why. Um, it’s, it’s pretty simple. It seems pretty simple once you lay it out that you can be both, or all three, or all four or all five things all at once. Uh, and the more of them you are, the more likely you are to have something happen to you. Mm-hmm . That doesn’t seem difficult to me, but, uh, I don’t know, maybe terminology gets in the way or, or racism or whatever, but …
Alice Wong: I think racism and able, right. I mean, I mean, there’s still a, I think there’s still an aversion to talk about disability, and I think this is where this might be, you know, some sort of a lag. And I, in terms of bringing up the disability goal in terms of other broader, broader, uh, social justice issues. So, you know, there’s just a lot of people just, you know, working really hard on this. And yet, and I guess, you know, trip the vote just gonna be, what if the, what part of this effort,
Donald Taylor: What impact has #CripTheVote had? What are some areas where more work remains?
Alice Wong: I’m not really sure.
Andrew Pulrang: I don’t think we know.
Alice Wong: Yeah. I don’t think we have a measurable outcome. And what we do know from our tweets is that we’ve had a positive impact on a lot of individuals who said, like, you know, they really feel a connection to this, uh, identity of this community. And, you know, they feel very empowered by it. So that in itself is a success. And, uh, we let folks, you know, tweet us and tell us, you know, I’ve registered to vote for the first time, you know, or that I’m gonna, uh, I’m gonna see, I’m gonna volunteer. I’m gonna, I’m going to a rally for the first time. I’m gonna offer rides to people on a election day. So I think a lot of little individual ways we’ve, you know, helped, uh, folks kind of spark their interest in political participation.
Andrew Pulrang: I think also the fact that we did get, we have had news coverage and, and, uh, media coverage that shows that we’ve helped, um, journalists of various to of various types, um, get a handle on disability as a political issue. I mean, I think that maybe some of those other circumstances that, that you mentioned before, um, you know, like Trump mocking the disabled reporter and also the, the police killings and various other things kind of perked their interest, but they maybe didn’t know how to get a handle on it. And we were, we were one of the places they could go to get some background, and that probably helped mm-hmm . You know, keep that balloon, uh, pumped up for a while mm-hmm . Um, which I think is a good thing. Mm-hmm . And I think people then read some of those stories. And maybe I be, I believe, started to view disability as a political, as a legitimate political issue maybe for the first time, and have an outlet to play around with that. Uh, people with disabilities, people, you know, tangentially connected with disabilities. Some parents, you know, we had some parents who maybe didn’t think of it politically before that kind of seemed like, uh, a light bulb went off when they read something about it. Um, that, that is kind of stuff satisfied me a lot because again, it kind of mirrors my experience with, uh, coming to realize, oh my gosh, this is political, not just personal.
Alice Wong: Yeah. There was a really nice, uh, there was a mob of autistic adults. It published an editorial, or, or I think she published a, an opinion piece, did the Washington Post about her experience of registering her son. She and her son registered to vote, and I think she definitely said that, you know, trip to vote was a factor in kind of encouraging her to do that. And she either said, you know, you know, registered and she said it was a great experience. And I think that’s, that’s really something we can be proud of.
Donald Taylor: Yeah. I feel like there’s a lot of dismissing of online activism. You know, people call it slacktivism or things like that. But I, I, I think as the story of Donald Trump’s remarks being caught on a hot microphone, you know, my sense is that maybe 10 or 15 years ago that just locker room talk or boys will be boys” would’ve cut it as an excuse. But that 10 years of social justice warriors talking about rape culture on campuses, on Twitter, uh, in comment sections on YouTube, have raised this issue to the level of public consciousness in a way that makes that no longer an acceptable excuse. And so I think that this kind of low level conversation on to like small audience to small audience eventually adds up. So maybe we should, uh, come back and evaluate, reevaluate an election or two from now.
Alice Wong: Yeah. I think that, I mean, I also think it’s.
Andrew Pulrang: Well, I was gonna say, I think, I think it’s also important to, um, that we who are doing it, uh, kind of keep a level head as to how much we actually are claiming to accomplish, right? Mm-hmm . Um, I think some of the, some of the criticism of, of activism and social media might be almost, uh, valid when it’s so overblown and like, we’re literally the most powerful people, or we’re gonna change everything and blah, blah, blah, blah. And we’re not really doing that. We’re, we really started out saying, we just wanna start to have a conversation. We want to do realistically what we think we can do. Um, we’re not speaking for everybody. We’re only speaking for ourselves. We’re gonna be, you know, bipartisan. But that doesn’t mean that you can’t be partisan in our, in our midst if you want to, you know, we had limited goals, um, tried not to get a, a big head about it. And I think that helps a lot. I hope, I hope we actually did that. But I think even trying to help a lot.
Alice Wong: Yeah. And I think, uh, you know, our, our approach was very modest, and I think it was really to please and serve ourselves. And in a lot of ways, you know, just giving us a space. And I think this is where, you know, activism, uh, whatever form it takes to really comes from feeling like, you know, you’re part of this larger group. And I think this is just, you know what, the way we facilitate that is by giving folks, you know, a place and a a day to, to call this, uh, this idea of, you know, more political participation, more active participation by people with disabilities in the political sphere. So really it starts with conversations. And we really see ourselves, you know, complimentary with other, you know, grassroots organizers and, you know, people really, you know, doing the nitty gritty work. But, you know, a lot of it starts with just having a, a place where people should tell their stories. And that’s, I think the, that the, the role that we feel.
Donald Taylor: You’ve both taken a lot of interest in cultural forms, whether it’s your CripLit or CripHop, Disability Visibility Project, Twitter chats, Alice or your blog and podcast, Andrew, where portrayals of disability on television and movies is a major theme. Why is culture important, and why are stories especially? So.
Andrew Pulrang: I think with disability there, it, it’s very easy to get the feeling that you’re all alone. And, um, stories, hearing other people’s stories shows you that you’re not. I also think that there is a sort of a subtle, uh, dampener on, on telling stories. I think that there’s, I have felt at various times in my life, uh, a social pressure never spoken, but they are in any way that says, you know what? We’re just not interested in hearing your story. You’re a nice person. We like you, you’re accepted, whatever, blah, blah, blah. But we’d really just rather not hear about your disability stuff ’cause that’s depressing and upsetting. And so I think that there’s a lot of people feel like they can’t tell their stories, um, especially when parts of their stories are, you know, bad news or, uh, not pleasant. Um, but I think you have to tell them [laugh], um, if not, if not for yourself and for other people to realize that they’re not unique.
Alice Wong: Yeah, I agree. There are …
Andrew Pulrang: Bigger, there are bigger reasons than that.
Alice Wong: Yeah. And I feel like we just, we’re just barely stretching the surface on, you know, the full range and complicity and, you know, wonderful diversity of, you know, people with disabilities. I think, uh, for so long, you know, the, the popular culture and, you know, media has really been very much, you know, from an able bodied standpoint, and they’ve been looking at us one way. But, you know, the perspective of people with disabilities dealing with their own stories is very different. And I think, uh, you know, just as there’s other kind of, uh, you know, efforts to, you know, in terms of, uh, reading diverse books and other campaigns to really, you know, get away from this white default, you know, storytelling in terms of Hollywood, you know, it’s a part of that is also about how do we embrace and encourage to disabled people to create their stories, to be out there and creating culture and creating media because, you know, for so long it’s reporters not really getting the stories right. They’re, you know, they’re always framing us as, you know, inspirations or, you know, on the other end, you know, as you know, this, you know, villages or very much extreme, but not really the full humanity. And I think that’s where, that’s why storytelling support is to show this full rage. And I think we’re just getting started.
Donald Taylor: What were some of the standout insights from the CripLit Twitter chat?
Alice Wong: Well, I guess, uh, that there’s so many people with disabilities who are fighting. I think it’s really exciting. I mean, I was pretty surprised to, there were so many people that were, that are on, uh, Twitter that have, you know, disabilities that are, you know, openly, you know, identify with crippling. I think, you know, there’s a lot of people with disabilities out there in the world who may have invisible disabilities or other disabilities who just don’t identify. And that’s fine. I mean, that’s, you know, everybody has their own, you know, process.
Alice Wong: It was really exciting to see people, uh, talking about writing and their creation of characters and how their disability, uh, identity, how that all plays into their creative process. So it’s really nice to see this happening. And, uh, also to see the wide range of genres, people writing, you know, sci-fi, you know, historical fiction. But there’s still a lot of barriers that, uh, that we’ve discovered in the crippler chats. Like, you know, a lot of, uh, barriers in terms of getting published, you know, getting, you know, feeling this sense of discrimination or stigma by editors and, you know, getting their, getting their work published and getting paid for their work. So there’s still a lot of, you know, barriers in terms of physical, financial and social, uh, for disabled writers out there who wanna make a living.
Donald Taylor: What were some of the standout insights from the disability and poverty Twitter chat?
Andrew Pulrang: Well, the, the one that comes to my mind first is a point about employment, which is that there are several different arguments about employment. Um, that, and, and the more familiar one is about we want to be employed, how do we get there? And what are the barriers to us having j getting jobs and getting better jobs? The less familiar one. And the one that’s almost like a taboo, which I think is equally interesting and maybe valid, is what about if you right now employment is not your highest priority, and that maybe you are going to say that because of my disability right now, I’m not up to it. I’m not prepared to be employed. I’m, I can’t be employed, which is almost, like I said, a taboo in the traditional disability rights community. You’re not supposed to think that. And we had a number of people in the chat who said, you know, and, and, and other times too, we’re kind, they’re kind of tired of hearing all of the good things that people are supposed to have as citizens. If you are a work, if you work, right, mm-hmm . You, nobody should, nobody should be in poverty if they work full-time. Um, uh, you know, Americans deserve a, a break, uh, as long as you work hard, right? Mm-hmm . And people are saying, well, what if I can’t work right now? Uh, does that mean I deserve poverty? Um, right. And that came out quite a bit.
Alice Wong: Yeah, I think it’s, it’s a, there’s a connection between, you know, capitalism and kind of the worth of our bodies. You know, are we really, our disabled lives really measured by what we should produce and by our labor? And I think that’s a really good point that, you know, people with disabilities and poor people should be, you know, their values should be, you know, completely measured by their, you know, contributions of the workforce. You know, everybody has a value in terms of what they bring to their communities and their, their neighborhoods to their families. And why is it that enough to have a, you know, to have a sustainable life? I think that was really, you know, just really important for people to think about. And also, you know, for me, I think about what’s interesting is that poverty is not just about an individual’s, uh, income and assets.
It’s really a lot of environmental systemic to raise why people are about poverty. I mean, you know, again, it’s about the social model. It’s about, you know, people who live, they may have some issue of who may have it, you know, some assets, but they live it there. They impoverished because they are living in, in accessible housing. They’re living in communities where they can’t get around. They don’t have the, you know, long-term services and supports they need to be able to participate in society. So a lot of these things are just as, you know, uh, huge measures of a person’s social poverty than actual financial poverty. And that, to me, was another huge dimension about the, uh, poverty that I don’t think, you know, we’ve heard and any kind of, you know, discussion throughout the, uh, throughout the campaign.
Donald Taylor: You two are both enthusiasts of online communication and activism. What are its possibilities and what are its limitations?
Andrew Pulrang: Oh, I, I think, I mean, one of the possibilities of it is kind of what you refer to is one of the things that people knock about it, which is that it’s actually pretty easy to do, or at least for a portion of us. Um, I mean, certainly you have to have a computer or some kind of mobile device, but those are, are, are genuinely getting more and more affordable. Certainly the mobile devices are, and you have, you know, it isn’t totally accessible to everybody, but it, it’s more so than you might think. And once, once you have access, you don’t have to go anywhere to do this stuff. And for people with certain kinds of disabilities, that’s a huge deal. So the things that people might criticize about it, you know, oh, it’s lazy. You’re, you’re not getting off your butt and putting your body on the line, you’re not getting, you know, all that stuff.
Andrew Pulrang: Well, that’s a plus for us, [laugh], you know, for some of us, at least, as they say, that’s a feature, not a, not a bug. Uh, and that’s, and, and one of the things incidentally that I learned about that I didn’t really understand before is that for me it’s a physical plus. And I was so interested to hear people with some, some, you know, cognitive disabilities and autism and things like that, who like it because they don’t have to go into big crowds, right? Mm-hmm. Or had never, literally never occurred to me. Um, so there are certain strengths of the medium that, that kind of fit very nicely with having disabilities.
Alice Wong: Yeah, I think, uh, we’ve definitely had people who said, you know, people with chronic illness and chronic death, they participate in our chats when they’re in bed. They’re like, I’m feeling really, you know, sick and low energy, but I’m tweeting at Be is bed. And I think that’s one of the things that’s so great about Twitter or Facebook, is that people don’t have to put on their clothes, that they don’t have to travel somewhere. And I think, you know, I really taken advantage of that too. I mean, I think, you know, for the three of us, Andrew and Greg and I did a organizing, a Twitter chat is a whole lot easier in terms of compared to an actual, let’s say, in person forum or b discussion about the same issue because you don’t have to deal with the logistics. You don’t have to deal with, you know, finding a space, accessibility of a space, rental of a space.
Alice Wong: I mean, this is another, you know, very real thing that costs money and time and actual labor and uh, energy. So I think, you know, there’s different kind of expenditure, just energy when it comes to using social media, but it’s, it definitely seems to be a little bit more, uh, opening and occlusive for some people with disabilities. Uh, granted, there’s still a lot of barriers for people who, you know, some people do find it too overwhelming during our Twitter chats in terms of the, the, the flood of information coming through through our hashtag. So that’s another, you know, aspect that could be very, uh, that could be a barrier. And also I think, you know, that there’s a lot of people just don’t, they just don’t like technology. They don’t like social media because they find it very impersonal. So on the flip side, well, some people like that aspect of it. Some people find it very, you know, there’s too populating. So, you know, there’s something out there for everyone. And I think that’s another important thing to emphasize that, you know, we’re just not, we’re not the, we’re not the only, you know, thing out there. And I think that’s just, we’re just one aspect of, uh, of people, uh, reaching out and having these discussions.
Andrew Pulrang: I think. Yeah, I’d like to add that. I think I’m, I’m glad Alice mentioned, um, the planning part because that’s, that’s, I hadn’t thought of that too, but, but absolutely the planning, it, it’s so different than traditional organizing that we don’t have high stakes meetings. I mean, we’ve had a few that we scheduled with each other to say, okay, we have to talk about, you know, three things on this date at this time. ’cause we really need to do only happened happened a few times. Most of this has been organized by the fact that, that, um, Alice is on the west coast. Greg and I are on the East coast. Alice is a night owl. And so some, somewhere between 11:00 PM e and 1:00 PM Eastern, those that little bit of time on any given day, we’re just gonna be on Facebook messenger talking about whatever. And some of it’s planning and some of it’s just sharing stuff and whatever. And, um, I’d say about a quarter of the time, I’m, I’m in bed myself, so it’s and it’s fantastic. It’s just unbelievable. And when I think of all the meetings that everybody hates mm-hmm . That take forever to plan to even have the meeting to discuss the thing that you actually wanna do, not having that is just incredible. Mm-hmm . So much energy is saved mental energy, not just physical.
Alice Wong: Yeah. I feel like, you know, that’s another are, you know, just to give, you know, Andrew, Greg, you know, a shout out is that, you know, all three of us are pretty much, you know, online at any given time so that, you know, we are really responsive to one another. So it’s really just easy to be totally on the same page. You know, we might have a question for each other. We say, Hey, what do you think about this? So we’re really just able to communicate really well and really effectively and do a lot of our preparation. You know, we’ve used Google Docs, we’ve used, uh, a lot of the, you know, technology that are sharing documents, and it just really helps us facilitate, you know, just be really efficient with our planning. And, you know, it just, it really helps me with, uh, working with two people that are really responsive and just as invested and, and just as committed. So I try to be with, I try to be in a better partnership. I mean, it’s just been, it’s just been a real pleasure and thrill to be, uh, to be doing this for the last, the last 10 months.
Andrew Pulrang: I absolutely, yeah. The same , but it is, but it is partly, partly due to the technology. I mean, credit to us for sure. But, but you know, it, it would probably be different. Not necessarily worse, but, you know, uh, if we had to certainly, well, yeah, it would’ve been worse. We never would’ve met. Let’s face it.
Alice Wong: Yes, that’s for sure.
Alice Wong: I mean, it’s really true that, you know, the social media has brought people together. I consider Greg and Andrew very good friends of mine. We see each other’s faces on, on Skype at Google Hangouts, but we’ve never actually physically been in the same room together. And yet that’s about, that doesn’t really matter to me. They are just my buddies. And I feel like this is where to where we are in 2016, that this is a basic thing to be, uh, to be part of.
Donald Taylor: You have two Twitter chats coming up, one on October 22nd about state and local elections and the other on October 30th on healthcare. What are some issues you want to address in these chats and on what should people wanting to participate come prepared to post?
Andrew Pulrang: Um, yeah, the one on, on, uh, state and local government, actually, Congress, state and local government. Um, I think our goal there is to, to just highlight the fact that, you know, obviously general elections involve more than just the presidency. And in fact, in some ways, equally or may, if not in, in some situations even more important, um, than the presidency, you know, the presidency is this shiny object that everybody gets fix, fixated on. But so much of what in it directly affects disability policy and disabled people’s lives, for instance, happens at the state level with state legislature, legislators and governors. Um, and at the local level, you know, when you talk about violence against people with disabilities and, and police, uh, mishandling of, of disabled people of all sorts, you’re dealing with sheriffs, right? You’re dealing with judges, at least in New York State where we vote on judges.
Andrew Pulrang: Imagine that, um, you know, you’re dealing with local judges and stuff. Um, so I mean, and city councils on, on whether sidewalks get done properly and, uh, buildings get built, you know, building codes get enforced. So I think we, you know, that’s one thing is just generally, Hey, don’t forget this stuff. Um, and the one thing I would like to say as a preparation is we’ve been collecting the Twitter handles of as many congressional candidates as we can so that people can tweet their interest in disability issues to them. You know, we’ve already got all the Senate ones. That’s fairly easy to do ’cause there’s only 50 Senate seats. Um, they’re all collected and, uh, we’ve got them posted on our, our Webs website. Um, the house ones, there’s so many, I’m sure we won’t get them all, but please go and, and, you know, either send them to us in advance or maybe be prepared to say who’s running in your area, area that you’re interested in, and how do we reach them? Who are their Twitter handles? Um, so that we can kind of drag them into the, into the discussion.
Alice Wong: And on, uh, on October 30th, when we have a chat on healthcare, and it’s gonna be about all types of healthcare in terms of, you know, Medicare, Medicaid, uh, private insurance, you know, all forms of, you know, health coverage and therapy. You know, a lot of general broad questions about healthcare coverage. You know, asking people, you know, what, what kind of, you know, issues they’ve had with, uh, obtaining healthcare, uh, keeping their coverage and, you know, what is, uh, what kind of barriers they face in terms of how their coverage and healthcare services. And, you know, this is really sparked by the last two debates because of the budget of, you know, uh, we have two candidates. They have very two different positions on the Affordable Care Act. And, uh, we have to really dive into, you know, what the impact of the Affordable Chair Act are people with disabilities, because already a lot of folks have been debating about, you know, what would happen if the ACA was repealed and how that would impact their lives. You know, this idea of the, you know, one of the things about the ACA that the, you know, nobody with preexisting conditions can be denied healthcare. And that was, I mean, this is a huge thing for people with disabilities and what would be the consequences if you know what candidate want and wanted to repeal it. So we hope to explore that. So we just, so folks will just, you know, want to be open terms of sharing their stories about, uh, finding and keeping their healthcare coverage and maybe their ideas for previous.
Donald Taylor: What are you two going to be working on once the election’s behind us?
Andrew Pulrang: In our lives or with #CrypTheVote [laugh].
Donald Taylor: Uh, with, with your, uh, activism projects and in your disability work?
Andrew Pulrang: Um, well actually, I, ironically, I’ve kind of gone back on a contractual basis working for the center that I used to work for doing social media. Um, so that’s, you know, part of what I’m doing. I also do tutoring at, at local community college in, in English. But, um, I do hope to continue to work with Not Hope. I will work with Keep to keep Crypto vote going because I, we have definitely talked about the need to keep the concept moving and to keep it going on to the next stage.
Alice Wong: Yeah, I mean, three of us have, we’ve really distrusted it, but we’re definitely gonna, Ville will definitely continue. Well, after the election day, you know, we realize gonna be not just about lectures, it’s gonna be about broader, you know, political participation and disability policies. So I think probably, you know, after election day, we probably, we’ll need to take a little break and a little breather, but, uh, we’ll probably come out with some sort of, you know, blog post or statement about our, our vision for the future and, uh, what we’ll continue to the, the future form of, uh, trip Devo. But we’ll definitely gonna continue then. And yeah, so I’ll be, uh, I will be continuing. I’ve worked with the disability, this project projects, uh, you know, getting folks to, uh, tribute just blog posts or charge people to, to record their own histories with the Story Tour app. And just, uh, overall having, uh, other Twitter chats with the about disability issues.
Donald Taylor: Where can people find you two and your Myriad projects online?
Andrew Pulrang: See, um, well, my stuff is generally at, uh, my website called Disability Thinking and it’s disability thinking.com and, and there’s some of the crypto vote stuff gets posted there. Um, but that’s, that’s where you could find me. And from there you can also get to my Facebook page and my Twitter, uh, account, stuff like that. Mm-hmm .
Alice Wong: Yeah. And Disability Visibility Project is very easy to find. It’s just disabilityvisibilityproject.com. And my personal Twitter is SF Dire Wolf and the Disability Visibility Project. Twitter is DIS visibility.
Donald Taylor: Alice Wong and Andrew Pulrang, thank you very much for taking the time today to talk to our members about #CrypTheVote and the Disability Visibility Project, the importance of voting and activism, and your many other projects.
Alice Wong: Thank you, Donald.
Andrew Pulrang: Thank you very much. We enjoyed it.
Announcer: You’ve been listening to TASH Amplified. For more about the series, including show notes, links to articles discussed, a complete transcript and a schedule of episodes, visit tashorgstg.wpengine.com/amplified. You can subscribe through iTunes or your favorite Android podcast app to have the series delivered automatically to your device so you never miss an episode. If you enjoyed today’s episode, please share it with your friends and on your social networks.
Today we talked with Alice Wong and Andrew Pulrang about #CripTheVote and the Disability Visibility Project. You can find Alice Wong on twitter at @SFdirewolf. You can find the Disability Visibility Project on twitter at @DisVisibility or on the web at disabilityvisibilityproject.com. You can find Andrew Pulrang on twitter at @AndrewPulrang. His blog and podcast are at disabilitythinking.com. You can find their third partner, Gregg Beratan, who wasn’t with us for this interview, on twitter at @GreggBeratan. You can find their twitter chats, including their November 10th post-election discussion, under their various hashtags: #CripTheVote, #CripLit, #KripHop, #IntersectionalCrips and others. You can also find these conversations archived on storify.
Music for TASH Amplified is an original composition and performance by Sunny Cefaratti, the Co-Director and Autistic Self Advocacy Mentor at the Musical Autist. You can learn more about the Musical Autist at www.themusicalautist.org.
TASH is a values and research-based advocacy association with a 40-year record working for the rights of people with disabilities.
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This interview was originally recorded on 20 October 2016.
This transcript has been lightly edited for clarity.
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