| Pushing Limits: Interview with Alice Wong, July 15, 2016  “Every issue, in my mind, is a disability issue, so things like mass incarceration, there’s always a disability angle, and I think things like violence, whether it’s state-sanctioned violence, violence on behalf of the state, violence by individuals, there’s a lot of disability with it. “ Alice Wong  | |
| Adrienne Lauby: | Alice Wong is the founder and project director of the Disability Visibility Project. She aims to create disability media that is intersectional, multi-modal and cross-platform. She’s also a board member of the Asian and Pacific Islanders with Disabilities of California and was a presidential appointee to the National Council on Disability. Her work includes preserving disability oral history and recently, she’s taking on voter education with hashtag #CripTheVote. |
| Adrienne: | Alice, last night, in the middle of the night, you posted an article about a 14 year old who lives with Type II spinal muscular atrophy, she’s decided to take out her ventilator and just start taking morphine until she dies. I bring this up not because of the story itself, which was pretty dramatic and we could certainly talk about that for hours, but the conversation that happened in the middle of the night and this morning, on Facebook, on the Disability Visibility project. I thought it was astonishing. |
| Alice: | I think this is where social media really has a power and a place for our community. When I started the Disability Visibility project, I started a Facebook group and I thought oh, I should post updates about our projects. In addition to that, I really thought it was important to share stories, be critical, and have a place for us to sound off about these articles about us. It is very much somebody’s lives that are made without us. |
| Adrienne: | You can sort of tell by the people that wrote this article that it was not written from a disability perspective. |
| Alice: | Just reading this article about [the 14 year old] hit me really personally, because I have that exact same type of condition. I have that disability, I have SMA Type II, as you can hear right now my voice is a little different because I’m using a Bi Pap ventilator. This has been part of my trajectory for … My body’s gotten weaker over time. To read this story of a girl who’s been in and out of hospitals, which starts [inaudible] travel for somebody, people with disabilities, especially if you’re born with a disability, but the fact that she’s, the narrative of the article frames her as being brave, that to me, was just such entrenched ableism: Â that somehow she’s heroic because she’s choosing to die. Â Death is somehow preferred to life with a disability. There’s pain, everybody goes through pain and trauma and mental health issues, but I think that’s where we have so many interventions and services available. It doesn’t mean, I just don’t buy it in terms of … Â |
| Adrienne: | She’s in such pain so she really has to know that it’s a noble choice she’s making. |
| Alice: | That’s right, there’s sacrifice for … |
| Adrienne: | For her family, but really she said it’s her choice for her own life. |
| Alice: | Right, and of course, this is the argument that the assisted suicide folks love, this idea of autonomy and individual choice. Who wants to say ‘no’ to individual choice, right? Or the freedom to choose, that’s un-American, but it’s really a false illusion when you’re part of marginalized groups where there’s overwhelming cultural messages that you do not belong, that your life is just such a struggle that… why struggle? |
| Adrienne: | What do you have to live for? (I just want to point out to our audience that you are not 14.) |
| Alice: | I am not 14, I am an old 42 year old. I think I’m baseing that feeling on when I was 14, I was one of the most angry, disabled girls you’d ever met, so bitter, so angry at life and it really wasn’t until I figured out that [inaudible 00:05:26] politicized, did I realize applying [inaudible] steps toward ableism in our society is not about my feeling body, oops, watch out. |
Adrienne:
Oh dear. Let’s just take a deep breath here. The conversation that was on Facebook was, to me, important because it was inside the community. It was among us. I wonder if that’s something that you’ve been able to curate.
Alice:
Yeah, so the way my Facebook group, the way it works is that I approve all posts, so it’s not just like anybody can post anything.
Adrienne:
You’re actually there, I mean, on-line in the middle of the night… there were a lot of posts.
Alice:
Yeah, and I was very deliberate in terms of what I choose to share. Once in a while I’ll get a lot of grumblings, people are like, “I sent you something, why didn’t you approve it?” I don’t have to justify why I chose what I chose, but I feel like for me, highlighting stories about people of color with disabilities, queer disabled people, immigrants, all the groups that really don’t get the spotlight as much support [inaudible 00:06:55], and also political issues. The right to live is a huge issue that we really need to talk about, and I do understand that some of these posts, you get the whole gamut of opinions, right?
Adrienne:
You do actually allow opinions, you weren’t just having everyone say, “Oh, I agree with you Alice.” There were people who said, “No, I understand how she feels.” There was a gamut, but the comments never devolved to personalities. They never devolved to ‘I’m right and you’re wrong.’ That’s because you set that up.
Alice:I try to [inaudible] that tone, but I do have two great co-moderators who keep an eye on the posts and try to remind folks to just take it easy. You know, if these sort of posts trigger people and if they are disturbed by it, we try to remind them to really just step back, take a break. If people don’t like the tone or the tenor of the posts, they’re always free to leave.
Adrienne:
People might be thinking that the Disability Visibility Project is all about your Facebook. There’s enough going on there that it could be that way, but it’s actually a much broader project, and I want to mention the Instagram project you’ve got going on right now which is 365 Days with Disability Photo Project. That project, I guess, just started in January, yes?
Alice:
Yes, and it’s really the brainchild of my partner and friend Meriah Nichols. She created this project. She has a great website, she runs 365 Days with Disability, and basically as someone who also uses social media, I thought, “This is another medium,” because a lot of people do, she had oral histories are audio-based, and let’s have a visual-based way for people to tell their stories, because we all know that various social media platforms can exclude people with disabilities in one way or the other.
Adrienne:
There are now 2632 individual photographs there, and as someone who regularly looks around the Internet for pictures of people with disabilities, this is a great archive in six months.
Alice:
Yeah, and all props to my friend Meriah Nichols, she’s the one who really championed this.
Adrienne:
You mentioned the audio part, so let’s talk about that because that’s a big part of your Disability Visibility Project.
Alice:
Yeah, so the DVP is a disability partnership with StoryCorps. StoryCorps is a national nonprofit that records oral history of all narratives, so we are a specific community partnership that’s really about people with disabilities, and about disability stories and disability culture. Anybody can use the StoryCorps app to record their story and upload it to StoryCorps. Anybody who lives in San Francisco, Chicago, or Atlanta can come in person to record their story at a StoryCorps booth.
What’s fantastic about StoryCorps is that number one, it’s free, so anybody can come in and they can [inaudible 00:10:47]. Also, you have the option of archiving your story with the Library of Congress. To me, that’s what drew me to partner with StoryCorps is the idea that we are creating our own history. We don’t have to wait for historians to do this. This is something that allows the community to really be empowered and to play in a role in archiving and really documenting the zeitgest of what’s happening right now.
Adrienne:
StoryCorps is pretty well known and a lot of us really like it, and it’s free, so anyone can go in, make an appointment. What is the role that you’re taking? Are you encouraging people with disabilities? Are they in a special format when it gets to the archives? What does that mean?
Alice:
As a community partner, we have all of our stories tagged under our name, so people going in are encouraged to, when they fill out their online reservation to make sure they tell people, “I’m coming in for the DVP.”
Adrienne:
That’s the Disability Visibility Project.
Alice:Yes, and when people go to the Library of Congress it will be cataloged as part of this subset of [inaudible], also to make it easier for people in the future to find their stories, but people who are interested in disability, anybody with the public can just come into the Library of Congress and look them up. Also, as a partner, I have a license agreement with them, so I have access to all of the stories recorded for our project. Right now we have I think approximately 120 oral histories right now, as of July 2016.
We started around, early, about two years ago, 2014, so my goal for this fall is to put those oral histories on our website. That’s another upside of being a community partner is that we can put our stories online on our own website.
Adrienne:
You are doing so much work in so many areas.
Alice:[I have] a partnership with another really dynamic amazing black disabled woman who’s just really creating her own online community of voices [inaudible 00:14:02]. Her name is [Vilissa Thompson]. She has a website called Ramp Your Voice, so I highly [inaudible] to look up Ramp Your Voice.
Alice:
I think for, sometimes I see her during the 25th anniversary of the ADA, there was so much hoopla, right Adrienne?
Adrienne:
Oh yes.
Alice:
For me, as a disabled woman of color, you hear about [inaudible], you hear about Judith [Hewitt], you hear about all the people with a history of disability rights, independent living movements, but I always wondered, you know, why no disabled people of color are a part of that story. To me, I feel like a part of the intersectional idea is that things such as the ADA, disability rights, they impact people of color differently because of racism, and I think this is where we need to talk about stuff like this. Vilissa and I thought wouldn’t it be wonderful for ADA26 to collect some stories from disabled people of color to see how do they feel the ADA? How do they feel disability rights and, you know, I think just their place within the community?
Adrienne:
It’s kind of appropriate, because so often people of color are an afterthought, and so the 25th anniversary was this big hoopla, as you said, so the year after let’s get around to thinking about what this has been like for people of color.
Alice:
Sure, I think it’s well overdue. It’s interesting in the disability community, there’s still a lot of folks out there who feel like that’s being divisive, when you’re talking about all your intersectional identities. By somehow talking about racism, and there is racism within, let’s not kid ourselves. There’s a lot of racism, homophobia, sexism, and internalized ableism within the disability community, but somehow to talk about that is about not a unified voice. I don’t think we’ve ever been [inaudible 00:16:39], and I think that’s what makes us better, is that we should talk about these difficult subjects.
Adrienne:
Absolutely. If we don’t talk about them it’s like ignoring the elephant, right? We need to be stronger and this is a crucial conversation.
Alice:
I think definitely for the younger generation. They’re not going to play by those rules at all, so if we want to really embrace the future in terms of the ADA generation that grew up with all these rights and with the sense that we demand more and we expect more, they aren’t very intersectional in a lot of ways, and we really just, I think, got to get woke. I think all aspects of our community is disability. We all really need to be really aware of all the privilege we have, and I’ve encountered a lot of disabled people who feel like, they just don’t recognize that there is privilege within the disability community. There are not just marginalized, oppressed people, but we all have some degree of privilege.
Adrienne:
That’s right. It’s endlessly complex and endlessly oppressive, so let’s get it fixed. I want to recommend to people that if you go on the Disability Visibility Project website you can find Alice’s informal survey of Asian Pacific Americans with disabilities, which has some conclusions and some recommendations. If you go to the Making Contact radio site, you can find her wonderful essay on disabled voices in radio. We’re just going to move all past that and yet you all do your reading, post about it on Facebook, but let’s talk about your Twitter work right now, and specifically #CripTheVote.
Alice:
Yeah, so #CripTheVote is a non-partisan online campaign that takes place basically on Twitter, but also we do have a Facebook page. This is comprised of three people including myself, I have two partners. Greg Beratan and Andrew Pulrang, and it was really Greg’s idea. He approached Andrew and I. All last fall, I don’t know if you noticed, Adrienne, but all the candidates, there were so many candidates back then, but during the debates and all the various events there were very few discussions about disability issues, or even people with disabilities as a voting bloc or as constituents.
Adrienne:
Right, we were just invisible in that entire campaign.
Alice:
There’s absolutely no mention.
Adrienne:
Oh no, wait. I think Trump put us down and said how wonderful we were, how crummy we were, [inaudible 00:19:43] in two different ways.
Alice:There was that, of course. There’s also various politicians who will say stuff like, “They’re just sucking up state services,” or we all are just burdens on society, there’s always that too. This is why #CripTheVote is the hashtag that allows people with disabilities to really just talk about the issues that matter to them, and we really encourage people to [inaudible], register to vote or just by using social media just to say, “This is who I am. This is what I care about. I care about sub-minimum wages. I care about Medicaid. I care about more special education funding.”
There’s a huge wealth of stories by people with disabilities about policy ideas that I really do think that decision-makes are missing out.
Adrienne:
You’re doing your eighth Twitter chat and that is just a time and a place where everyone can be on Twitter at the same time, although people are encouraged to use the hashtag, #CripTheVote before and after that particular chat…
Adrienne:
…Disability violence and public policy. That’s pretty dang timely.
Alice:
Yeah, I know. It’s really sad. People with disabilities encounter and experience violence in so many different forms, whether it’s institutional, whether it’s in a school with seclusion or restraints, whether it’s in healthcare settings, whether, very sadly, within the family. These are really, it’s a drop in the bucket but we’re going to attempt to touch on all of these issues and really let people know about how violence has really impacted our lives and the different forms of violence that take place that affect people with disabilities.
Adrienne:
Right now with Black Lives Matter obviously this is being discussed a lot. Sometimes it comes up in a big way and other times it’s completely missed that many of the people who have been killed or endangered are people with mental disabilities, so there’s a very obvious intersectionality there that kind of goes by the wayside.
Alice:
Yeah, I know. This is where I’ve been using Twitter, I use both the hashtag #BlackLivesMatter, but you know what, for a lot of the articles about black and people of color with mental illness indiscriminately shot by police and I really do want to raise that level where people who care about Black Lives Matter don’t realize that this is a disability issue. This is an issue that affects so many people of all different communities and we’ve all got to really have a place and share our voice to raise these issues.
Adrienne:
If we go back to #CripTheVote, sometimes it seems like the Black Lives Matter, the violence against disabled people, whether they’re in institutions or in your family, they don’t have anything to do with the election, but they have everything to do with the election.
Alice:
I think so. Every issue, in my mind, is a disability issue, so things like mass incarceration, there’s always a disability angle, and I think things like violence, whether it’s state-sanctioned violence, violence on behalf of the state, violence by individuals, there’s a lot of disability with it. Adrienne, as you and I talked about earlier, right now we’ve looked at the rhetoric regarding mass violence and how it really belies people with special illness.
Adrienne:
And on that note, we have to stop, but we will talk again. I think you have to come and be our special correspondent.
Alice:
I would love to.
Adrienne:
Thank you for coming in, Alice.
Alice:
Thank you so much, what a delight.
Adrienne: Alice Wong is the founder and project director of the Disability Visibility Project and wears about 16 other hats as well. I’m Adrienne, thank you for listening today and thanks to our engineer, Erica Bridgeman, Josh Elwood for the ID and the entire Pushing Limits gang. A special thanks to Shelly Berman. Pushing Limits is produced by a collective of people with disabilities. Contact us at 510-848-6767, extension 636, or by email at pushinglimits@kpfa.org. Our website is pushinglimitsradio.org, we’re on Facebook as Pushing Limits Radio. Next week, Education Today –
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