CiTR

Transcription included below:

CiTR 101.9FM
4th Annual Access Day
Interview with Alice Wong
Aired on May 17th, 2018

Dezy: You are listening to citr 101.9 FM and it is our 4th annual Access Day so from now till 3 p.m. Pacific time, we will be featuring programming centered around accessibility, self-advocacy, social accessibility, adaptive programming and more. My name is Dezy Nair and I'm from citr’s Accessibility Collective. We are broadcasting from Musqueam territory in Vancouver here on the West Coast. In this hour will be speaking to notable American Disability Advocate Alice Wang . Most notably, Alice is known as being the founder and director of the disability visibility project which is an online community dedicated to recording amplifying and sharing disability stories and culture.

(Music - Darkest (Dim) by Tokimonsta)

Alice: Yea so you know i was born disabled. So you know I think the experience of being born disabled in a non disabled world from the very beginning you know in a lot of ways. You made me an activist .you know i have said this before in other conversations, but i do think just the experience alone has made me an accidental activist. You know in a lot of ways i felt uncomfortable with the identity and title of being an activist for a while because you know for a while i wasn't grassroots or community organizer. I wasn't affiliated with an organization. You know, i was just kinda just working on things you know on a very small scale, you know for myself and for others . But you know the last 5 or 6 years you know i do identify as an activist because i am using social media now a as a real tool and platform to help me build a communities. So i guess long story short is that i always been an activist just because of the world that we live because of ableism and white supremacy. But ya it’s been an ongoing thing that did, that started off as more an of individual how i navigate things with with myself to to realize broader and systemic issues. System change is really where it is at because if it helps me it helps other people. I hope that answers your question

Dezy: That was good. That was good. So did you have any roles models growing up?

Alice: You know I really cannot remember especially as a young child, growing up in the midwest you know being asian, being disabled and a girl... I had nobody ever that looked like me growing up. It wasn't until i was in college or you know as a young adult i started reading more by actual disabled people. That was when i started realizing. I got a load of this. Especially in media, I don't think there were very many people that looked like me. I think that’s another thing about you know, hashtag by my friend Vilissa Thompson started the hashtag #disablitytoowhite, I think there is a huge gap in terms of representation of all kinds of multiply marginalized disabled people because we do exist, but we just never see ourselves reflected in mainstream media

Dezy: And has that changed now? Are there people that you look up to who inspire you now?

Alice: Well i will say that you know in the last few years I think senator Tammy Duckworth. You know...What a badass. I think she is so fantastic, what she does and her you know prominence, visibility, as an elected official, a mother, a disabled women of colour. To see her, fully in herself. I do think people that i do really admire, are people i’ve known throughout the disability community and people i follow through twitter. I dont know folks, but you know i alot of people like to … twitter. But I found it an amazing way to connect to diversely abled folk. They are so outspoken and really speak their truth. A lot of people i admire are people i meet on twitter.

Dezy: You know you’ve been doing this for a while now, you’ve written for a number of publications, you have the disability visibility project. How do you feel about being someone that now others look up to?

Alice: oh jez... well. Its weird when people are like “oh i’ve heard of you” or “oh i follow you”. I still find that kind of weird. You know I put stuff out there, sometimes you don't know who will read it, who will touch it, you know that’s really humbling and gratifying. I feel that if folks enjoy and get something out of the work that i do, ‘always nice to hear that. You know i don't want tone myself up as some sort of example or be on some pedestal for somebody. I just try to keep it real, as real as possible.

Dezy: Can you tell us what kind if projects you are up to lately?

Alice: I guess i like to do a lot of partnerships with people. So the last few months i’ve been partnering with a disability rights baby organization called rooted in rights and its based in Seattle. One of things that I approached them about earlier this year, to do a joint call for stories related to the #meetoo movement and the disability community because it comes to representation. You know with the #meetoo and #timesup movements blew up, one thing i immediately noticed was the absense of disabled people and their stories in general media coverage .Even for activists and advocates regarding sexual assault and harassment, when they leave groups out, guess what group they always leave out that is impacted? Disabled people. This will be great way to generate stories from our community and by our community. So you know rooted in rights agreed to put out a call. They’ve published 4 to 5 blog posts by disabled people related to #meetoo. We also had a twitter chat this year and another thing we have coming up on May 9th is a chat on disabled parenting in a lead up to mothers day. I think that that is a form of representation, in terms of does what that look like? What does motherhood look like? How do we center disabled parents, disabled mothers, in these kinds of conversations using social media to get that reach and visibility and sincerity out there so that all of kinds of folks in the end can hopefully share and amplify it.

Dezy: Now you're the founder and project coordinator of the disability visibility project. Can you tell us a little bit more about it and how it came into formation?

Alice: So the disability visibility project, i started in 2014 and originally i started it as a community partnership with storycorps. Storycrops is a a national non-profit in the US. Basically I thought as individual, thought i could i could record a few oral histories as a way to celebrate the disability community. In 2015 it was the 25th anniversary of the Americans with Disabilities Act so originally it was just going to a this one year campaign. I thought maybe i should try to get my friends to do it maybe. Maybe i could interview some of my friends that i thought were amazing and just get their stories to be told. It really blew up, it became this thing that the disability community really embraced and based on that one year, you know a lot of people wanted to do that. So It’s been ongoing since then and i’m really proud to way that we have over 140 oral histories so far. With our partnership with storycorps, they have a relationship with the library of congress so that participants have the option of archiving with the library of congress. It feels really good that we as a community are empowered to tell our own stories and create our own histories and that we are leading something for future generations. That’s pretty awesome.

Dezy: That's amazing. Now what are some things you have hoped or are still hoping to achieve with this platform?

Ya you know i’ve made it kind of it a point to not have any grand plans. I am really open to different partnership. I mentioned rooted in rights, i really feel collaboration with different folks is very powerful and a great way to build community. I am really open to new opportunities in the future but i would really like to do more conversations, create more media featuring people with disabilities. Finding ways to help build skills for others disabled people who want to create media but don't know how to do it yet. You know, those are some other ideas i’m trying to figure out.

Dezy: So you're saying the disability visibility project has been around for quite some time now . What have you noticed in doing this project? what kind of changes and sentiments maybe about disability from the general public or within the disabled community, did you notice in your time since you started this project?

Alice: I guess i do feel like they are a little bit better in terms of folks noticing and appreciating disability rights, disability justice and disability culture. It’s really the result of people with disabilities creating their identity and calling out on ableism, whether that’s on social media or other platforms. I do think that there are more people who are proud to be who they are and are really unapologetic about who they are and i think that to me has really been picking up. That’s a really great sign. We still have a really long way to go in terms of parity and having enough, you know, power. It’s been a slow but really encouraging sign that a lot of people with disabilities are not waiting around for other people to notice us. They are just being themselves, you know, loud and proud and that’s really great.

(Music - Darkest (Dim) by Tokimonsta)

Dezy: You are listening to citr 101.9 FM and it is our 4th annual Access Day so from now till 3 p.m. Pacific time, we will be featuring programming centered around accessibility, self-advocacy, social accessibility, adaptive programming and more. My name is DezY Nair and I'm from citr’s Accessibility Collective. We are broadcasting from Musqueam territory in Vancouver here on the West Coast. Stick around! Don't go away we'll be right back after the break with Alice Wong

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Dezy: Welcome back to citr 101.9 FM you are listening to our interview with Alice Wong, long term disability advocate from the United States and founder of the disability visibility project. Founder of the disability visibility project.

(Music - Darkest (Dim) by Tokimonsta)

Dezy: You were appointed to the National Council on Disability under the Obama administration. Can you tell us what lead you to the position and how was that experience ? that's such a role

Alice: As i recall there was a white house asian american pacific islander committee that many years they started some sort of story telling competition and i submitted a video. I think somebody at the white house saw that at the office of public engagement. They said oh gosh there is a asian pacific disabled person talking about intersectionality, without you know using that word, being herself. Because of that video, I made that video just to put it out there, but i didn’t think much of it. Someone in the white house noticed and then they asked me if i wanted to be on the National Council on Disability. You know, I was really floored by that but yes it was a really great experience. It was a three year term and i learnt a lot in terms of policy-making and talking about federal issues. I just having a small seat at the table in terms of feedback and just learning how legislation and policy works.

Dezy: The Americans With Disabilities Act or ADA, was acted 27 years ago. ADA is a civil rights law in the United States that prohibits discrimination based on disability. I asked Alice Wong what her thoughts were on the ADA, having grown up under the ADA and what her thoughts were on whether or not such an act is significant.

Alice: I really do hope so. I have been following Canada and I am aware of Ontario’s new DA. I have been following the upcoming federal disability act. Again, I do hope that, it does happen. One of the limitations of the ADA is that there is no enforcement. In a lot of ways i do hope that Canada learns from the ADA and adds those kinds of elements to their act. While it is important to have civil rights law , federal, that any Canadian can reference and say “hey this law protects my rights, accessibility is important and that public spaces are obligated to accommodate me”, that incredibly important. For any canadian with a disability, you have something to claim as your own. But again, I do hope that you guys are in the early stage, that you close those loopholes that exist with the ADA, to really dig in. A strong piece of legislation that truly has teeth. I think that one of the things that you all are going to have to deal with are other stakeholders such as business owners and others who will be very resistant to that because social change is really tough and a lot of people still don’t understand why disability rights are part of the larger arch of the efforts of civil human rights.

(Music - Darkest (Dim) by Tokimonsta)

Dezy: You are listening to citr 101.9 FM and it is our 4th annual Access Day so from now till 3 p.m. Pacific time, we will be featuring programming centered around accessibility, self-advocacy, social accessibility, adaptive programming and more. My name is DezY Nair and I'm from citr’s Accessibility Collective. We are broadcasting from Musqueam territory in Vancouver here on the West Coast. Stick around! Don't go away we'll be right back after the break with Alice Wong.

(Music - Darkest (Dim) by Tokimonsta)

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(Music - Darkest (Dim) by Tokimonsta)

Dezy: Welcome back to citr 101.9 FM you are listening to our interview with Alice Wong, long term disability advocate from the United States and founder of the disability visibility project.

(Music - Darkest (Dim) by Tokimonsta)

Dezy: So you were mentioning earlier about your role in the National Council on Disability and what you learned from that experience. Have there been kind of lessons you've taken away from that experience, in terms of initiating social social change ,now, having been out of the role and still being politically active ?

Alice: I think i’ve learned in my time there and different relationships is that cross movement organizing is really where it is at. Single issue activism is really tough. I think we need to have coalitions of people that really understand that what will impact us will impact other people and that we all have an interest in supporting one another. I think that is a great lesson in terms of breaking out of our own silence and reach out to other people and instill power that way.

Dezy: So almost exactly a year ago you, wrote a powerful op-ed for the New York Times titled “My Medicaid, My life”, about the effect that Medicaid or some people know it as Obamacare about what effect Medicaid had on your life. What inspired you to write this piece?

Alice: I think canada culturally is different, but in the United States and I know in particularly in the Uk people who are using safety net programs, what's known as “welfare”, are critically demonized and are they are othered and are kind of lumped in. It’s part of this whole anti poor sentiment that’s really a function of capitalism in the United States. In the recent, new administration, the outright hate of poor people and disabled people all kinds of marginalized people has been really much more plicit, much more ramped. The attempts to appeal the ACA is really a threat to so many people, not just people like myself, kids, pregnant people, poor folks, older folks. So i felt the need to share my experience of why medicaid is a life line. Why safety net programs like medicaid and medicare, which are two programs in the United States that serve millions of folks, why people who don't know much about who are “good taxpayers” should give a damn. I think that there is that sentiment amongst the ruling and the middle class that like “oh those people are just lazy and they can’t help themselves they’re just not trying hard enough”. You know, that’s real bullshit. That is why if you want a community that is strong you gotta protect all kinds of folks. I think the same thing is for everyone, I think they are in denial, in a lot of societies about vulnerability. I think we are just afraid to talk about vulnerability, not just about our bodies but really who we are as people and our right to exist. I think that really sad that we can’t be open about our lives in a real way. A small slice of what I go through.

Dezy: And what was some of the feedback you got from that piece? and from others?

Alice: I didn’t read too many comments on the new york times. There were a few comments saying that i bet you i do march , and i do march, and i do earn a lot of income. There were folks that were like “I do march, why doesn’t she have private insurance?”, “why does she need to be on medicaid?”. As they read my essay, they would understand that personal assistant services for disabled people like myself really is not covered by private insurance, it’s really through these government funded programs ,like medicaid, that really keeps people like me alive and in the community. That to me was kind of interesting that somehow people think that “you are on all these welfare programs, how can you march?”. There are actually a lot of people who are working and receiving food stamps or housing assistance and other forms of assistance. That to me was very surprising that people that thought that that was unusual.

Dezy: In your piece you touch on changes proposed changes that were going to be made to Medicaid under President Trump. so this is hot topic, what are your what are your thoughts on the current president Donald Trump, Donald Trump in terms of disability Justice?

Alice: Well… oh boy. I guess whether he says it out loud or not his administration has been going full on assault on disability rights and justice.I think he has been relaxing regulations on civil rights to the department of justice. There is a department of housing and urban development, there is a housing cabinet, they are planning to increase the rent of people who live in public housing. The education department, they really are supporting charter schools versus public schools, weakening the civil rights of students with disabilities. Related to medicaid, he is allowing to states to add work requirements as a condition to be on medicaid. This is going to be really destructive for a lot of folks because while those workers who are supposedly for able bodied recipients, there are people who are disabled who don't fit the criteria of “disability” under these rules and they will be impacted by work requirements. So will so many other abled bodied people on medicaid who, lets say, have caregiver responsibilities they may not have access to transportation or childcare. You know these work requirements are going to put people at risk and are really going to create more instability for the poorest

Dezy: What kind of shifts have you seen within the disability justice spheres? This president, who is making laws and is making reforms that clearly directly impact the disabled Community, what kind of changing sentiments have disability justice spheres had towards fighting for disability rights?

Alice: I don’t know. I think to be honest, I think everybody is just doing what they can with what they have. I think that, I do feel, really forming coalitions, linking up with other folks, trying to leverage what we have to really pushback. It’s been a really trying time, because for anybody who's really concerned, it has been one dose of fire after another. I think as an activist it’s just been the danger of burning out has been very real because everything feels urgent, time sensitive and really important. to me, it has been a real concern for myself and the people around me because it is distressing. I think it is very distressing.I think people get scared People are scared, i think people feel beaten down for a lot of really valid reasons. I think thats what ive seen, i’ve seen some amazing work and some amazing solidarity. That has been the most beautiful thing, the solidarity amongst a lot of folks. It has been relentless, thinking about the US, its has just been relentless, utterly relentless.

(Music - Darkest (Dim) by Tokimonsta)

Dezy: You are listening to citr 101.9 FM and it is our 4th annual Access Day so from now till 3 p.m. Pacific time, we will be featuring programming centered around accessibility, self-advocacy, social accessibility, adaptive programming and more. My name is Dezy Nair and I'm from CiTR’s Accessibility Collective. We are broadcasting from Musqueam territory in Vancouver here on the West Coast. Stick around! Don't go away we'll be right back after the break with Alice Wong.

(Music - Darkest (Dim) by Tokimonsta)

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(Music - Darkest (Dim) by Tokimonsta)

Dezy: Welcome back to CiTR 101.9 FM you are listening to our interview with Alice Wong, long term disability advocate from the United States and founder of the disability visibility project.

(Music - Darkest (Dim) by Tokimonsta)

Dezy: What are your thoughts on how disability is represented in the media world and in news coverage?

Alice: Well I think that you know representation is more than just about who is being covered but also who is doing the storytelling. For me that is a real issue because part of it is power. How many people in newsroom, how many editors are disabled and are interested in covering disability issues? You know, in a lot of ways how appropriate is it for non-disabled writers to cover disability in a authentic and well rounded way? That’s a really good question to ask because do think that in a lot of ways diversity in media conversations, disabled are not condersied in this overall move towards diversity. I would like to see more more people who do have the privilege and do have the opportunities and capital like editors and other reporters to share those opportunities to other disabled writers, reporters, journalists and freelance writers to really give them the opportunity to speak on the story. I do really feel like when it comes to representation and how disability is framed, so much of that starts with the person who is doing the storytelling. When it comes to journalism, it often does reside with the person who is editing and reporting. So I want to say that it prevents disabled pictures, more be hired and paid to tell our stories

Dezy: So you have the disability visibility visibility project and now you have a disability visibility project podcast, what lead to you to want to approach the podcast format?

Alice: Yea...I think that it took me awhile to do a podcast. I wanted to so one for a few years. I wanted to take my time. Podcasting seemed very intimidating to be and also to be honest I needed to save up money because I wanted to be sure i wanted to do it. If I was sure I wanted to be sure i did a transcript.I wanted to be sure I could get people to help with editing. I set up a crowdfunding campaign. I launched that think a year or two ago and that was a way to really help me make sure that the media, whatever media I create, that it is accessible. So the disability visibility podcast is just kind of my way of being a quasi reporter of sorts. It’s a way to talk about current issues and to really amplify and highlight the work of what other disabled folks are doing. It’s really another way of doing things that already in the interviews but in another format and its been really fun. I really enjoy podcasting. I really want to get to the invisible labour that disabled people perform everyday, just to get around, just to live their lives. I think talking about that lived experience, talking about that invisible labour that is still unacknowledged by society, i think that to me is one of the reasons why i do this podcast, to really shed a light on that.

Dezy: Awesome. So we're just about to wrap up here, I have one more question for you. So you do so much to fight for disability Justice and you mentioned the activist burnout that you that you, and other disability activists often feel. In your own opinion and your own life, what keeps you going and fighting for political freedoms of the disabled community? do you have any measures of self-care that you carry out?

Alice: Oh absolutely. I do believe in self care.I do believe in indulging yourself. Really try to treat yourself. For myself, I love eating pastries. Love my lattes, I am not ashamed, I love my lattes. So you know treating myself , to, you know a donut. I am really jealous of you all,i don’t have a tim hortons. I hear it’s fantastic. I try to indulge myself and I try to take breaks. Sometimes i will take a few days off social media because sometimes it is incredibly overwhelming. I try to make myself do other things, focus on my friendships, on my family, on relationships outside of activism. I think finding things that give you life whether it’s cat videos, whether it’s netflix, whether it’s a giant delicious slice of cake or pie, I say go for it because life is too damn short.

(Music - Darkest (Dim) by Tokimonsta)

Dezy: So that wraps up our Interview with Alice Wong. Big shout out to Deepi Leihl for help with this interview. Thank you to Eleanor and Madeline from CiTR for putting together access day and of course a big thank you to our interview guest Alice Wong for speaking with us. Music is by tokimonsta the song is darkest dim. My name is Dezy Nair and I'm from CiTRs accessibility Collective, I'm signing off. Thank you everyone for listening. Stick around for some more of this amazing day of programming.

(Music - Darkest (Dim) by Tokimonsta)