Posts Tagged ‘POC’

The Accidental Activist – Alice Wong

Wednesday, April 10th, 2019

Alice Wong, and Asian American woman in a wheelchair. She is wearing a black jacket with a black patterned scarf. She is wearing a mask over her nose with a tube for her Bi-Pap machine. Behind her is a wall full of colorful street art
Founder and Director of the Disability Visibility Project, Alice Wong shares her story of becoming a Disability Activist out of necessity. Her love for stories, people and natural curiosity eventually lead to the Disability Visibility Podcast.

In this episode we talk:

  • Disability, it’s not a one size fit all
  • The origin of DVP & Story Corps
  • What is an Activist anyway
  • Importance of people of color in disability & social Justice movements
  • Why we podcast

Finally, press play and here how Twitter helped Alice and I become friends!

Listen

Resources

Transcript

Show the transcript

TR:

What’s good Reid My Mind Radio Family.

back with another episode and this one right here is a goodie! Before we drop that intro music and make this episode official, I want to take the time to welcome any new listeners. Come on in and make yourself comfortable. Mi podcast es su podcast!

If you are new here and I haven’t scared you away yet,, my name is T.Reid producer and host of this here series of audio files transmitted over the interwebs right to your earholes! And since we’re about that accessibility here, we send it via transcript to your Braille embosser, oh and your eyeballs too.

Specifically, I’m talking about stories and profiles of compelling people often impacted by some degree of blindness, low vision or disability. Every now and then I share my own experiences of adjusting to becoming Blind as an adult.

I’m excited about this episode and you should be too.

We have a true well respected superstar disability activist who joined me virtually on the Reid Compound, that’s home of the RMM Laboratory, where you can find me with my audio microscopes, beakers and chemicals mixing up some new concoction.

Honestly, you’d enjoy this one uncut and raw. It’s her work and output that make her dope.

But I’m in the lab, therefore I have to add a drop of this and that because it’s what I do. It’s my way to be sure it gets through the veins a bit faster and right to that brain. This one hopefully will also touch your soul.

Let’s get it!

Audio: Reid My Mind Radio Theme Music

AW:

Hi, my name is Alice Wong. I’m the founder and Director of the Disability Visibility Project. I’m a Disabled person living in San Francisco, California.

TR:

If you’re on Twitter and especially tapped into the #Disability neighborhood, you heard of Alice Wong, @SFDirewolf.

Founder and Director of the Disability Visibility project which means she’s tapped into much of the latest disability related information as it relates to politics, justice and culture. She’s all about amplifying the voices of people of color with disabilities. We’ll get into all that but first I wanted to get to know her a bit more.

AW:

My parents immigrated to the United States in the 1970’s. I was their first kid in America in a new land.

Shortly after they had me my mom noticed other babies my age were crawling. She noticed that I wasn’t crawling the way other kids were.

I was diagnosed with a neuro muscular disability similar to Spinal Muscular Atrophy.

I guess I would also say that because my disability is progressive meaning that my body has changed a lot during my life. I used to walk. Then I used a walker then a wheelchair. And for people who are listening my voice sounds a little funny because I’m wearing a mask over my nose and it’s attached to a ventilator and that’s to get me support when I breathe.

I think this idea of adaptation and constantly trying to adjust and make the most of what I have I think that’s the relationship I have with disability.

TR:
If you’re familiar with Reid My Mind Radio then you should know how I feel about adaptations. In my opinion, it’s just one of the ways that I think non-disabled people could learn from people with disabilities.

It’s the mistake I think the able bodied world makes every day in overlooking a community of problem solvers and creative thinkers.

AW:

Disability isn’t static.

Whether you acquire it during your life or whether you have a chronic illness progressive disability like mine, all of us are evolving, we’re changing and society is changing. We’re entering and exiting different environments . How our disability interacts with those environments, with attitudes with institutions that’s always going to be a variable.

I think that’s kind of exciting in a sense, that we’re constantly learning. It’s not a very simplistic linear experience. For example, blind not blind, disabled not disabled. It’s a lot more complicated
than that.

TR:

Complicated indeed. Just ask someone with Low Vision.

To the casual onlooker, they appear (awh dang, I’m going to say it!) normal). So when they put their face close to an item on a shelf or pull out their handy dandy magnifier they’re faced with the questions. Or they struggle to ask for assistance. Of course there are those with the unseen disabilities who experience similar struggles.
Complicated from both internal and external effect of ableism.

Managing her own disability proved to be an early lesson to Alice’s activism later in life.

AW:

Sometimes it starts with being able to speak for yourself and fight for what you need. That was kind of my experience in junior high and then High School.

Getting angry at things that were happening to me to realize that I had to push back, I had to speak up and fight for myself.

I didn’t think of that as activism. As I got more connected with the disability community in my 20’s. I moved out of Indiana where I grew up to San Francisco and I really found people and culture that really welcomed me. That really opened my mind to like the variety of the disability community and learning more about the history of disability rights and activism. That’s when I really started to realize that being an advocate for yourself is all well and good, but it’s really about changing the system. It’s only through changing systems and cultures that you really make an impact. I definitely feel I’ve been an accidental activist.

TR:

Well what exactly is an activist anyway?

According to Merriem Webster:
a person who uses or supports strong actions in support of or opposition to one side of a controversial issue

The example used is that of a public protest. But who gets to say one version of activism is superior.

AW:

There are people who definitely look at online activism, social media as second rate, not as real that you’re not as hard because your bodies are not on the line.

Audio: Multiple news clips of disability rights protesters over sounds of protesters chanting.

AW:

There’s that very narrow idea of what it means to be an activist.

AW:

I really do take to social media a lot I do realize my own usage is a real privilege.

There are people for various reasons who find social media incredibly inaccessible and overwhelming and I totally get that.

I have privilege in terms of not really having a lot of access barriers the way some people do depending on what platform you’re using. I have access to a laptop and an internet service. All of these things cost money and there’s a certain amount of skills. So those are my privileges that I readily acknowledge.

TR:

Get in where you fit in!

There’s room for all types of activism.

AW:

There are some people who lets say they’re not able to leave their beds and they are just as bad ass organizers and activist than somebody who goes and locks themselves at a sit-in. But I think there’s all kinds of methods and each one of them are valuable.

TR:

Valuable, like the work taking place at the Disability Visibility Project.

Before DVP was known as an online community dedicated to creating, sharing and amplifying disability media culture, it was a means to collect and archive oral histories of people with disabilities.

AW:

It was 2014 and this is the year before the 25th anniversary of the American’s with Disabilities Act in July 2015. I remember around this time all sorts of people, all sorts of disability organizations they were all kind of gearing up for this big event. It was a major milestone.

Back then I didn’t work for any nonprofits, I wasn’t part of a group or anything and I really thought what could I do as an individual. How can I contribute to this? I went to a Story Corps event in San Francisco and they talked about community partnerships that they have in the San Francisco area

##TR

Story Corps’ mission is to preserve and share humanity’s stories in order to build connections between people and create a more just and compassionate world.

They began collecting stories in 2003 at a story booth in Grand Central Terminal in New York City.

After hearing about the various partnerships in San Francisco, Alice went right up to them and was like:

AW:

“Oh do you have any with the Disability community and they said no we don’t”. I thought ok this could be my little way of doing something.

##TR
Little way? Maybe in the beginning but check out the progression.

AW:

I spoke to them about the possibility of forming a partnership with them.

So originally the DVP was going to be a one year campaign to encourage people with disabilities to tell their stories.

Not only are our stories not told they’re not considered as part of the larger American story. You have Civil rights, all the different movements, people with disabilities have been part of those movements.

We’ve also been part of our own movements. That to me is what really motivated me because we all know about Helen Keller and FDR. What about the history of now. What are everyday people doing? What are their lives about? What do they care about. I think that’s what a lot of us don’t realize is that every day we’re making history and the idea of recording a few oral histories and having them archived at the Library of Congress because that’s what Story Corps does, this to me was really exciting because it’s really a gift for future generations.

TR:

By the end of 2018, about 140 oral histories have been recorded as part of the DVP archives.

There was a natural progression from gathering oral histories that lead to other outlets including a blog and podcast.

AW:

I love talking to people. I guess I’m just really curious. I’m always interested in what other people are doing.

the idea of podcasting is like a radio show that’s topical, that’s current that’s really exciting. I was thinking about doing one a few years ago but it seemed really daunting. I wasn’t sure what’s involved, how much will it cost and just whether I would be able to figure it out.

TR:

Well she definitely did that.

She offers some good steps that I wish I thought more about early on.

AW:

Planning, budgeting. I really took my time to have a clear idea of what the podcast would be.

TR:

Since 2017, consistently podcasting publishing episodes every two weeks, The Disability Visibility Podcast is a great resource for conversations about politics, culture and media from a disabled lens.

AW:

Each episode is roughly 30 minutes. It’s divided into 15 minute segments or maybe just a longer extended conversation. I’ve also had episodes where I’ve had a group conversation with two interviewees. Those are fun too. Basically conversations by disabled people about a whole range of topics.

[TR in conversation with AW:]
And it’s cross disability, correct?

AW:

I’m also very open about what I don’t know and my own kind of implicit biases. I want this to be an opportunity to highlight and really just give space to all kinds of disabled people. And also just to not have me dominate or drive the conversation but to really have them being the ones who drive the conversation.

[TR in conversation with AW:]
I think that’s something that you and I share, that curiosity about things.

I don’t know a lot about a whole lot, (laughs) but I know I want to know and the idea of being able to talk to people and just do that and present it in a way. That’s just really cool.
AW:

Yeh! We think of the guests as the experts. I think of the guest as the expert. I want them to shine. My role is to pick the subject and really do the prep work and hopefully ask good questions. That’s what really gives me joy. When I’m in conversation with somebody and you feel the energy when two or three people are in a room and we’re kind of like Jazz, just riffing , improvising and just vibing off one another. That’s what’s so exciting about disability culture it is a shared experience. Whether we are exactly the same or not, but very often just the lived experience. Sometimes there’s a lot of common themes and when we see that reflected upon one another no matter how different we are it just makes us feel more empowered I think.

[TR in conversation with AW:]
Absolutely!

There’s so many different topics and you’re broadening the scope of disability for many people, including myself. I was happy to see you had just recently, the B-HEARD Project and Talia Lewis talking about the prison industrial complex and how that affects people with disabilities. That was a really good episode.

AW:

Yeh, that was kind of a part two of another episode I did earlier, the year before on police violence because I believe they go hand in hand.

There’s the school to prison pipeline which we all know disproportionately impacts Black and Brown kids, but also Black and Brown disabled kids in particular.

There’s mass incarceration, the whole prison industrial complex and the way it really does capture so many people with disabilities. And then there’s the other aspect too. In terms of the everyday violence that happens to people with disabilities but at the hands of law enforcement. There’s a lot of layers I feel like these are issues that sometimes we within the community don’t talk about. We really need to continue flushing that out in as many ways as possible. And to make it as personal as possible so that people can really get a sense , a visual sense of the cost at the heart and the impact.

TR:

In 2018, Alice expanded that storytelling to include the self-published Resistance and Hope anthology.

AW:

the truth during the 2016 presidential election I think I panicked, I freaked out like a lot of people when we realized Trump is our president.

Audio: Clips of 45th POTUS (TR does not say that name.) on disabilities. Includes comments on Paralympics “hard to watch”, comment on Senator McCain being captured and mocking disabled reporter.

Audio: Prophets of Rage, Public Enemy

AW:

I thought to myself ok, what can I do.

We’re going to be entering some really dangerous times under this administration and we know, marginalized folks always knew what the consequences of this president.

What are some of the wisdom and the knowledge and expertise by disabled people who have always been resisting.
This didn’t just happen two years ago.

Audio:
“46,000 year old skeleton of a Neanderthal man, who had significant Cerebral Palsy. Other Skeletons have been found with missing limbs”

AW:

Disabled people have been surviving and thriving and resisting for centuries. Since time began.

Audio: Multiple clips on disability history:
* Aristotle has been said to have been an advocate for Eugenics and the killing of disabled children… let there be a law that no disabled child shall live”
* “Romans mutilated deformed people and just through them into the Tiber River”
* :”Just this past century we had Eugenics and freak shows… that planned to eliminate or denigrate such individuals respectively. Mental disabilities and Dwarfism in Medieval Europe were considered the produce of possession and sin and were often treated as such. With their only opportunities to survive in society as court jesters and fools.”

AW:

The idea for this anthology was really a chance to ask people that I personally admire, that I learn a lot from . people like TL Lewis, Leroy Moore, like Vilissa Thompson, like so many people

It’s an E-Book featuring 16 essays by 17 disabled people.

[
I would say that pretty much
]
All but one person is a disabled person of color. So that to me was also a really intentional thing that I really wanted to center to the voice of disabled people of color.
I really think that there aren’t enough representation and enough attention paid to disabled people of color.

[TR in conversation with AW:]
Why is that important to you. What does that lend to the overall disability movement.

AW:

While I’m thankful for the people who were part of the first, male movement, the independent living movement in the 60’s and 70’s but it was a predominantly white experience. These folks became leaders, formed organizations. They’re the ones that are often noted in history. They’re the ones who are seen as Icons.
I know this in my bones that there were disabled people of color and other marginalized folks that were not given their due. I think that has always been part of the problem of who gets to tell the stories?

It’s always about power. It’s about privilege. As somebody who is proud to be Asian American disabled woman I’m cognizant of the sexism, racism that’s a part of our community. I think that’s something we don’t talk about enough. That we have to like step out be as we have to always hide those parts of our experiences in order to get along. It’s prettier to homogenize our experience and we’re so different, we’re so diverse. Those who enjoyed some privilege in terms of representing our community have really missed out in terms of what we could all learn from each other. I always kind of known that my own experience was very much situated within my culture, where I’m located in terms of growing up in the Mid-West. being a product of immigration. I’m going to see various issues very different from others. I think there’s so much in terms of living with all of these different intersections that give really valuable perspectives. Let’s face it those that set the agenda aren’t really the ones who are the most kind of at the margins. So their idea of what disability rights is may not be what disability rights is for somebody else. So that to me is why I’m very intentionally try to widen the center. Rather it just be white, physically disabled experience.

# Community

TR:

That’s the other aspect of the Divisibility Visibility Project, building community.

AW:

I grew up disabled in the 70’s and 80’s pre internet. It was a pretty lonely experience. I didn’t feel comfortable or confident until much later. I think not only because I didn’t have people like me whether in person or online but I also never saw myself reflected in the media. So that’s another huge reason why right now this time we’re living in is kind of amazing because people are using online tools like Twitter YouTube, Tumbler. We are all creating our own content.

I think it’s a really exciting time to be alive in 2019.

TR:

Through the use of online tools like Twitter and their hashtags DVP coordinates and hosts regular Twitter chats. These are conversations in the form of structured Q&A’s where the community is asked to answer questions on a specified subject.

The beauty of these online public discussions is that others can easily be brought into the conversation or discover them. Plus their archived.

Information about past & future chats are published on the VVP website and shared via the Twitter account @DisVisibility

As far as the future for DVP is concerned,

AW:

The Affordable Care Act, Medicaid, Medicare, food stamps, housing , transportation, education. Almost every one of these areas there have been a real attempt at going backwards in terms of advancements for civil rights and disability rights.

Overall I think it’s been a war against the poor, immigrants, people of color, against the LGBT community and against women – you know reproductive rights.

There’s a lot to look out for.
[TR in conversation with AW:]
This is probably one of the hardest questions Alice. With 45’s (Note – TR does not say that Trump name) and all that, what do you see in the future that’s hopeful?

AW:

Delay – ooh!

[TR in conversation with AW:]

Laughing . Unfortunately that’s a hard question, right? More laughs.

AW:

Yeh!

You know I do find, it is really hopeful to see so many people engaged and politicized in ways they may not have been before. That to me gives me hope that people realize oh shit, we all are in this together.

My friends, my neighbors, they are all going to be hurt. It’s up to all of us to speak against hate, bigotry, and to call it out.

That to me is hopeful to see people not give a fuck anymore. Put aside this whole idea of respectability politics. Oh we gotta be civil, we gotta be polite, we gotta work within the system. Well you know what, sometimes you can’t do that. Sometimes the situation calls for direct action, it calls for people to be angry and to really show that anger. There’s some hope in that. People are hopefully coming to terms with our relationship to what kind of world do we want to live in. What kind of leadership do we want and deserve. Last fall the wave of women and people of color elected for the first time. That’s kind of exciting. People are galvanized. People want to do something. There’s a lot of potential with that.

Audio: “Well you’re quite hostile!” from “Prophets of Rage” Public Enemy

[TR in conversation with AW:]
What is that you like to do when you’re not fighting Ableism Alice?

AW:

Oh so many things Thomas.

I love coffee, I love good desserts with coffee, I love going to bakeries cafe’s, I have a love affair with fried chicken and French fries, I love really really good southern food but also just watching TV, watching cat videos, Netflix. We all need to find things that give us joy. Talking to my friends, being lazy, love to sleep in lay around. Those are things that keep me going.

##TR

Lazy? Do not get it twisted. Let’s take a look at what Alice and DVP turned out in 2018.

Hit me!
Audio: I Go to Work” Kool Moe Dee

I’m going to need the right vibe for this one.

She’s written article for multiple publications on topics including;

the California wildfires
plastic straw bans and accessibility
an essay on the visibility of Senator Tammy Duckworth as a disabled mother of color
HR 620 and disability rights
representation of disabled people in entertainment
for Teen Vogue.

– Published 5 oral histories of some movers and shakers in the disability community in partnership with Story Corps. 

Lots of blog posts including guests posts, Q&A’s

Produced and hosted 26 episodes of the
Disability Visibility podcast
with her team:
co-audio producers Cheryl Green, Geraldine Ah-Sue, and Sarika Mehta.

Multiple media appearances including:
United Shades of America with W. Kamau Bell
on CNN
– Featured in the
Bitch 50,
(I didn’t name it!)

a list recognizing the most impactful creators, artists, and activists in pop culture influential feminists by Bitch Media and
Colorline’s 20 X 20,

Multiple presentations and talks:
the 2018 Longmore lecture at the
Paul K. Longmore Institute on Disability
– Co-presented a workshop on reproductive justice and disabled people

Co- hosted a couple dozen Twitter Chats
for DVP and several other organizations and groups.

Don’t forget she Published and edited
Resistance and Hope: Essays by Disabled People
available on Amazon
and free in multiple formats

To find out more about that and how you can share your disability story and have it archived with Story Corps visit the DVP at DisabilityVisibilityProject.com
Follow them on Twitter @DisVisibility
And definitely make sure you follow Alice if you want to be in the know about disability issues and culture at SFDirewolf.

All these links will be on this episodes show page at ReidMyMind.com.

[TR in conversation with AW:]
Alice Wong yawl!

Salute to you Alice. I think you do some wonderful things and I know I’m learning from you. So I appreciate you.

AW:

Well I am learning from you. And I’m so happy that, again it’s through Twitter that brought us together.

[TR in conversation with AW:]
Yeh!

AW:

That’s what’s really awesome We may have never come across each other in real life but thanks to the internet I could call you a friend.

[TR in conversation with AW:]

Absolutely, absolutely! I truly appreciate that. I truly appreciate you and the fact that you just called me a friend I’m very happy about that! Because I hope to continue this. I honestly do learn a lot and I appreciate that because this is part of my growth and you know finding where I fit in with disability and how this all works and I appreciate it.

AW:

Me too you know It’s all part of the journey, and you’re part of it.

TR:

Tell me who wouldn’t want to be on a journey with cool people, bad asses getting things done and doing it from a good place. I guess could be summed up by a hashtag from another project of Alice and two other disability champions Mia Mingus and Sandy Ho.
#AccessIsLove.

Audio: Music… “It Just Makes Me Happy”, DJ Quad (No Copyright Music)

One thing disability has taught me that applies to just about everything; there’s no normal. There’s the way we’ve been used to doing something and if anybody tells you it’s easy to just change that, they haven’t been through anything.

But we can adapt. We can find a new way and sometimes that new way, even though it’s not the one you would choose, it may be the one you needed and may prove to bring you where you’re supposed to be.

A few things I want to highlight before we get out of here.

No one gave Alice permission to start Disability Visibility Project. She didn’t need a board of directors, she didn’t need a large organization behind her. She made the decision to make it happen.

We can all do that. And if you have to change it up cool!
If you don’t enjoy it that’s cool too. Just start it if you’re thinking about it.

psst… I’m talking to you!

Like if you’re thinking about subscribing to this here podcast, I suggest you follow through with that feeling!

Subscribe!
Apple Podcast, Spotify, Google Podcast, Stitcher, Tune In Radio or wherever you get podcasts.

You can always send me feedback or recommend a guest or topic all you have to do is hollaback!

We have the comments section on the blog, ReidMyMind.com.
The email; ReidMyMindRadio@gmail.com
The Reid My Mind Radio Feedback Line where you can leave a voice mail: 1 570-798-7343

I would really love voice messages that I can share on the podcast. If you don’t want to call, you can grab your smart phone and record a voice memo and email the finished recording to ReidMyMindRadio@gmail.com.

I’d love to hear and share the voices of those who are listening. If you want to send a message but don’t want it shared just say so and it’s all good.

I appreciate you listening and if you liked what you heard please rate and even review the show via Apple Podcast. And please, tell a friend to listen. Spread the love, man!

You can always visit www.ReidMyMind.com, that’s R to the E I D like my last name!

Audio: Reid My Mind Radio Outro

Peace!

Hide the transcript