Reid My Mind

Music begins – A bouncy synth opens a driving Hip Hop beat.

TR:

[megaphone sound effect]

Greetings Reid My Mind Radio family. Welcome back! to the first episode in this final season of 2022. I’m talking about Young, Gifted, Black…

[in the background]

say the word

[yells]

And disabled!

If you don’t know it all began with an episode I produced in 2020 with my man, brother, Ajani AJ Murray. If you haven’t listened to that original episode, I strongly suggest that you do.

I like to begin the episode with some sort of an intro, you know, an update, a skit, a few words loosely tied to the episode or its theme. Well, today’s guest has so much greatness to share that I want to honor that and leave most of this episode to her and the topic at hand. But here, we always kick things off with the drum.

Reid My Mind Radio Intro Music

A collage of different crisis from news reports: 01:07
“We have stormed the Capitol!” A rioter yells!

“To Washington and the high stakes hearings on the January 6 attack on the Capitol.” – News anchor.

“A rally organized to protest COVID restrictions, with members of the state’s militia groups openly taking part” – News Reporter.

“Longer fire seasons, stronger hurricanes, more intense heat waves and floods. Across the world climate events are getting more extreme” – News anchor

“If it feels to you like there are more weather related natural disasters. That’s not just a feeling.” – News reporter

TR:
All of these things are taking place around us today and are increasing in occurrence. And my recent dive into the speculative fiction of Octavia Butler, and it really got me thinking how prepared are we people with disabilities for major disaster? Then I recall meeting someone on Clubhouse who can really speak to this in a way that truly takes this all into account.

— Music begins, Triumphant horns blow as a symbol crescendos into a mid tempo Hip Hop beat lead by a driving kick drum.

Justice Shorter

Justice:

I am a black blind lesbian woman. I hail from the Midwest Region born and raised in Milwaukee, Wisconsin, but I currently reside in Washington DC.

I am the granddaughter of Leola Daniels Carter and Fanny Jahari. I’m the daughter of Lily Mae Carter and Michael Demetrius Shorter. It’s always top of mind for me to link and give honor to the lineages in terms of the work that I do, the spaces that we occupy.

I describe myself as a curator, as a creative, a coordinator of sorts. I am a disability justice advocate a Black Disabled Lives matter amplifier, a international trainer and speaker.

I do a lot of work that heavily focuses on disaster, justice, disability justice, racial justice, gender justice work, because they are inextricably linked, you cannot have one without having the other.

A lot of my work kind of centers around those primary issues. Iadjusted and adapted as I continue learning and growing and evolving because quite frankly, there is no other way for me to move and maneuver in this world.

TR:
A part of that learning, growing, evolving is in regards to her blindness. This began with glaucoma around the age of five or six.

Justice:

That actually first started out with a retinal detachment which took all of the vision in my right eye. Then glaucoma slowly started to take the vision and my left eye. From very early ages, it has informed my life. So it would be categorized as a developmental disability for sure. Given how it has informed my developmental years, my early developing years.

My relationship to disability, though, is one that has come with the progression of time as well. I have always been deeply steeped in my blackness. But coming into a closeness and intimacy with disability has been something that has happened over time.

TR:
I’m sure there are a lot of people with intersecting identities who are adjusting to disability that can relate.

BIPOC, or a ter that better encapsulates this group, people of the global majority, who may have spent years learning how to deal with overt racism, microaggressions and all sorts of injustice, while trying to develop a strong and positive self identity. Only to have to now be faced with internal and external ableism.

Justice:
It wasn’t until I started to delve more deeply into the work of quite frankly, people of color with disabilities, that I started to see myself more clearly and I started to smile and rejoice of what that was reflected back to me.

To see yourself mirrored and the experiences of other people who have similar journeys as you do, really helps you to getting a better understanding of how you can position yourself in this community and in this space.

So it wasn’t until I started reading folks like Mia Mingus, Leah Lakshmi Piepzna-Samarasinha, Patty Burns, Stacy Park Milburn folks who, again, are luminaries in the space of Disability Justice articulators and architects of what we now know as disability justice. That I was really able to grab hold to it in a way that was so deeply personal, and that encompassed such a profound sense of pride.

TR:
We’re talking about the power of people and our stories, enabling us to fully see ourselves and explore all of those things that make up who we are.

Justice:
I had already realized quite early on that standing in my truth was a means of survival. It was a means of me utilizing my own story, as opposed to having others use it for themselves. What does my story mean, not only to myself, but other young women like me, other Black lives, LGBTQIA, folks just like myself, other people of color, like myself with disabilities, it wasn’t until I started to think about that a bit more that I was far more inclined to start working on disability as an area of practice.

TR:
Part of that process can literally require finding the right location, a place that presents opportunities for justice, and then moving to Washington, DC.

Justice
I came out to DC, the doors kept opening and they were all related to disability. There were a lot of internships and practicum opportunities and all of that stuff. And all of them were like disability oriented opportunities. And I’m like, well, here we go, I’m not gonna turn down this internship I’ve been dreaming up or this post grad school job that I’ve been dreaming of, because it’s in the disability space, and I didn’t want to be held in a box. I was very scared for quite some time that disability would cage me. I say that with purpose. I say that with intention. So many of us are caged because of our disability.

TR:
Cages are more than physical, a boundary that limits our movement. Well, that can be in our thinking about our lives and possibility.

Justice:

Considering how many people of color, how many black people are imprisoned in this country, and how many of them have some sort of disability, mental health consideration, or access or functional issues.

I think about trying to do this work in the different layers of discrimination that happens when you say that you have a disability and you’re trying to find a job, I did not want to be pushed aside, I did not want to be pushed out of the different sectors that I wanted to pursue professionally. The opposite happened. The very thing that you think will cage you can sometimes be the thing that frees you. It became the thing that allowed me to see myself more clearly, allowed me to grow wings, in a sense of flying in all of these different directions and with all of these other phenomenal people who are also doing dope stuff being completely embodied in their truth, and that should just excited me to know him.

TR:
When I first began making audio even before this podcast, I thought about working in radio and reading mainstream stories. I recall thinking,

[faintly]

I’m more than just disability.

[back to normal speech]

When I hear Justice say…

Justice
The very thing that you think will cage you can sometimes be the thing that frees you.

TR:
… Learning more about disability culture and challenging my own ableism has brought me to a place where I realized the opportunity and value in telling stories from a disability lens. In no way am I settling for something less rather, I’m fully aware of his greatness and possibility.

Justice:

A lot of folks have distanced themselves from the word disability as a means of survival. That history is the interlocking ways that people have been discriminated against all of those forms of compounded discrimination has caused many folks to distance themselves, whether it be locking you out of the school systems, locking you out of the employment system, locking you out of the type of medical care that you need, locking you out of the type of housing that you need, actually locking you into nursing homes, psychiatric facilities, group homes, settings that you don’t wish to be in. People with disabilities have an acute awareness of these things. It has caused folks to quite honestly try to be very fearful about the proximity of disability, kind of getting too close to that word, or getting too close to those issues. That should not be the reality that we all live in.

TR:
You know this isn’t about the word disabled, right? Many prefer to use terms like “special needs” or “differently abled,” but that doesn’t change the impact of systemic ableism.

Justice:
And that is why it’s so deeply important that we change those structural inequities that people have to deal with on a day to day basis, so that people can, people of color with disabilities, young and old, of any age range, any type of disability can hear that word and understand that it is inseparable with freedom. It is inseparable from joy. It is inseparable from laughter, and levity and friendship and fellowship, all of the things that allows your soul to breathe. That’s kind of what I try to center my work on as much as I can.

TR:
Building bridges for us. Our wellbeing physical, emotional, spiritual. We’re talking about our safety and you know, that goes beyond natural threats.

Justice10:00
There’s also human-caused crises that we have to contend with: the Flint water crisis, things that are happening with the nuclear power plants, factories that pollute water, you think about environmental injustice, which also, of course leads you to the Environmental Justice Movement, which was founded by people of color. A lot of times that history gets pushed aside or buried, when we talk about environmental justice.

TR: 10:24
Whether man made or natural, these threats to our safety don’t always just spring up on us.

Justice10:30
Dealing with structural violence on a day to day basis. Also, it creates what people in the social work and psychology world call the sandpaper versus baseball effects. The baseball effect is when something hits you over the head, it’s kind of very hard. It’s a hard hitting issue that evokes this trauma. But then there’s also the sandpaper effect, which is trauma that things that grate on you over time, it kind of wears you down wears on you over time, things like poverty, not being fully represented, not only in terms of your politics, but also in terms of these social environments that you navigate within things like medicalized ableism. And discrimination, all of these things wear on you, over time, all of these things are structurally violent, it is the difference between your potential reality and your actual conditions.

TR:
Too often individuals are held up as an example to model “he overcame the poverty,” “she broke through the glass ceiling.” Whether we’re talking about racism, sexism, ableism, we hear it all the time, “she was able to do it, why can’t the rest of you?” But focusing on individuals does nothing to address the systemic problem.

Justice:

We as people of color with disabilities, we have the potential certainly to pursue whatever aspirations that we want to pursue in terms of professional or academic or spiritual. And yet, so many of us are kept out of those areas of those sectors for all sorts of reasons, but many of them tie back to racism, ableism, sexism, ageism, so on and so forth. All of those things are structurally violent, because it keeps you from living the life that you could live.

Toni Morrison tells us that racism itself is just a distraction. It keeps you from living the life that you truly wish to live. It keeps you from doing the things that you truly wish to do, because you are in a perpetual space of having to explain your very existence to people who quite frankly, may or may not even give a damn at the end of the day.

TR: 12:31
That’s fighting for employment that enables you to earn a living wage in order to afford housing where you don’t have to worry about your children getting lead poisoning, or access to good schools or even clean drinking water. And then there’s something we really need to consider in regards to the often suggested advice around disaster preparedness.

Justice 12:50
So many individuals who are impacted by disaster or who live in disaster prone areas are told to simply prepare, to pack up as much stuff as you can pack up, hoard as much stuff as you can hoard. Have you a to-go bag that’s filled with all of these things that you can afford to put in it. But if you cannot afford these things during times that are not embodied by crisis, then you certainly can’t afford them enough to stock up on them prior to a crisis. Are we sculpting solutions and recommendations based on the conditions that only a select few can meet? Or are we creating solutions and ideologies, remedies and practices that are going to be applicable for the people who need them the most.

TR: 13:36
As Justice simply put it, preparation comes with privilege. If you do have that privilege, by all means, consider checking out various suggestions on what to include in an emergency to go kit. Ready.gov has a number of suggestions. As people with disabilities you also want to consider your access needs like white or mobility canes, assistive technology, and other technology that may be required for you to gather information or communicate with others. However, it’s important to note that the onus shouldn’t always be placed on the individual.

Justice:
It’s kind of the wave in the finger in the face response.” Why didn’t you prepare better, we can’t always save everybody!”
People deserve to survive irrespective of what their class status is. My thinking around this has shifted. I go more towards how are we building community and connection. Whereas I may only be able to buy a flashlight, my neighbor up the street may be able to buy a couple of extra cases of water. My other neighbor down the road may have a generator. My other neighbor down the street may have a couple of more cans of food. Can we create community in this way? Disability Justice teaches us that we are each other’s survival strategy.

Music begins – a smooth slow jazzy Hip Hop groove.

TR: 14:46
This feels like the antithesis of our society’s norm contrary to the idea of independent making sure you have your own solely relying on yourself. This is interdependence. We spoken about this here before and up approach that encourages collaborative work.

Justice 15:02
coming back to center around community, how can we help each other survive? What I can’t carry, maybe you can. What you can’t do, maybe I can? How can we support each other?

TR: 15:14
Another term for this way of acting and thinking is mutual aid.

Justice 15:18
It’s looking at this in a way that says, even if you cannot contribute in these ways that kind of meet other material needs, your life is still worth saving.

How can we support in that way? That could be any of us at any time, that is also a means of planning for the future. I don’t have this disability today, I may have it in two months, or if something hits me in a certain way, I could have that mobility disability.

So us planning around how we’re going to support these folks in our community, now, it’s important for all of our collective survival.

TR:
Perhaps this goes beyond the physical.

Justice:
Cole Arthur Reilly, who has this wonderful book called This Year Flesh. In that book, Cole says, What if God did not just want to use you? What if he also wanted to be with you? I think about that, in terms of people having inherent worth and recognizing wholeness, which is one of those disability justice principles. We recognize the wholeness of people, we understand that there doesn’t have to be a utility. In order for people to survive catastrophe. We could just inherently care about the presence and the value of each other as people. And that could be enough to make us think about preparedness in a more expansive way. That recognizes that all of us deserve the opportunity to survive.

TR: 16:31
With that said, what exactly are some examples of mutual aid that exists today?

Justice 16:36
Mask Oakland, because they have done extraordinary work to help protect people with disabilities during wildfire seasons by making sure that people had masks to help themselves to breathe during the wildfires of California. These are people with disabilities helping other people with disabilities by supplying them with masks.

They also had a very targeted approach in terms of helping people who were houseless because they were the folks who were the most exposed. People who can go indoors and shut the windows and use central air units to stay cool and protect themselves from the air.

TR: 17:06
How often do we hear the narrative of people with disabilities as recipients of aid? Rarely do we hear of us as providers, especially when it goes beyond the disability community. But check out who stepped up when the pandemic hit and the rush on masks resulted in a shortage.

Justice 17:23
Oakland had masks that they were trying to distribute at the very least when supplies were running low.

Providing people with information on what types of masks to get and what type of masks did what, and making sure that people were willing to know. So that informational awareness was key.

This is also something that a lot of folks are doing online, in terms of telling people different ways to stay safe. And all of these different COVID protocols, people sharing knowledge on how to save themselves.

This is also happening in kind of non-crisis wave people with disabilities creating hashtags and creating websites around disability at home. What are some of the hacks that people are making? I think that’s actually the site’s name, “disability at home.”

TR: 18:00
Disabilityathome dot ORG, a catalog, if you will, of ideas and inexpensive hacks that enable people to create low cost solutions for mobility aids In Home Solutions for creating safe, accessible spaces in bathrooms, and for completing daily chores at home. As Justice noted, the same things that keep you safe on a daily basis are needed during disasters. So providing information is a component of disaster justice, to activism and advocacy, a real and important function that just so happens to be accessible for those with disabilities.

Justice 18:36
Sometimes when we talk about activism, we try to only act as if that can happen in ways that are very physical, being in the street, going up against police officers going out there and directly helping someone evacuate carrying them on your back out of the flaming building, right?

When we think about that, as forms of support, or activism, or things that would kind of constitute this framing around who is a responder or who is someone we can call in a crisis related event. But there is also a ton of work that’s happening in virtual spaces and online. And that’s really key, especially for many of us who can’t physically go out and beat the streets by way of protesting or going door to door to advocate for the things that people need.

TR: 19:24
We’re talking about all sorts of things here from crises like that in Flint, Michigan, or Jackson, Mississippi, that deprive people of clean drinking water, health care, access to physical and online spaces. A lot of that’s happening through hashtags, some of these online Twitter spaces and Facebook groups.

Justice 19:43
This is important because that’s how knowledge is passed. So many of us are learning through the lessons of others and through the lives of others. And when you share that information, it positions people with disabilities as experts of their own narratives, but also of their own survival. And I think that’s really important.

TR: 20:01
When talking about survival, Justice stresses that it goes beyond the high profile weather events.

Justice 20:07
What you might not consider to be a crisis, I would! The fact that there are people who might be doing construction in your building, and they don’t tell the blind folks what’s happening, it’s not a crisis for anybody else moving around that building, except if I hit that ladder.

People with disabilities have additional considerations that we’re thinking about on a day to day basis, it may not be a crisis as someone else, oh, I just have a scratch. But for me, it could take me out for days, or it could take me out for much longer than that. I think about that and I affirm those experiences for people.

TR: 20:37
Okay, now check out this example of mutual aid, Justice knows neighbors, and they know her. Even more than that, they look out for one another. So when Justice isn’t around, a neighbor will say something to a construction worker, like…

Justice 20:50

“You cannot leave that ladder here, you can, you cannot leave all of these tools in the middle of the floor because the cane may not catch it.”

TR: 20:58
Then I think it’s solely about themselves, but rather, each other, community, like a time a man with a knife tried to enter the building.

Justice21:06
The neighbors came together and supported one another and they made sure he did not get in here.

I had another neighbor who was locked outside of our building, the door knob literally came off, so we couldn’t get out. And he could not get in. What was my solution? My first solution was not to call the police because all of us were black. Two of them were black men. And there’s some additional considerations that you have to take into account in that way. The first thing that I thought of though was to go grab this neighbor of the black men, he came down, he literally undid all of the joints to get that thing undone so that we could all get out of the building. And so this guy could get in.

TR: 21:39
Together, they took action that would prevent such a crisis in the future.

Justice 21:43
We advocated that a new door be put on to the building, we advocated that the construction crew close the windows at night, so that different people didn’t have access into the building, which created another safety concern.

TR: 21:54
The lesson here, any conversation about disaster preparedness must be about advocacy.

Justice 21:59
I encourage you to start talking to the people around you making community with the people around you. I encourage you to start looking around you and assessing kind of what are the things that you can do if you are spending your time at a workplace and eight hours out of your life, every single day, Monday through Friday. And then okay, I think we need an evacuation chair, where is it because how am I going to get out and it’s not just acceptable that everybody else can leave except me. That’s not cool. I’m not okay that that is our plan, or that our plan is this only one person knows how to use the evacuation chair, and nobody else knows how to use it. So if Rob is not at work today, then it’s just too bad for me if a crisis happens on that day,

TR: 22:36
Justice recommends thinking about all of the places you spend time, community centers, public parks and malls for all sorts of crises. In 2022, the reality includes acts of insurrection homegrown terrorism, thinking about mass shootings, do you have an escape route, or no have a way to shelter in place? These are just some of the questions we should be asking ourselves.

Justice 22:58
How can we use things like vocational rehabilitation services, assistive technology organizations that say, Hey, I think I need this piece of assistive tech because it’s going to help me in a crisis. I’m going to use it for dual purposes. I’m going to use it on my day to day but it’s certainly going to be useful as something to support me during a crisis as well.

TR: 23:14
How does geography play into preparation? Specifically, I’m thinking about those living in rural environments far from their nearest neighbor.

Justice 23:22

I think sometimes that gives you the illusion that there’s no community because people aren’t close. And that’s an untruth. Many of them have way more survival techniques that any of us would even understand because they have had to live on their own. And because they haven’t had easy access to just go down the street and get to someone.

Listen, when the cold snap happened down in Mississippi, it was 2020 or 2021. All the years are running together. When the cold snap came into those areas. A lot of black folks who lived in very rural areas mentioned how “Listen, we didn’t have any running water,” “our generator started to go out,” “there was no one around us for miles, we had to figure out how we were going to get from point A to point B.”

What ended up happening, you still have people who ended up driving in, you still had people who ended up starting to bring people over to their homes so that they can have baths. You had people who were doing carpools that make sure that people had access to food and water. People showed up for one another.

TR: 24:19
Of course, this doesn’t apply to everyone. Justice encourages organizations to really think about this, especially when making new purchases.

Justice 24:27
If we’re getting new vans, if we’re getting new buses, are they wheelchair accessible? Those very same church buses, vans, these things are also becoming evacuation vehicles in a crisis. Are they equipped with a wheelchair lift? If they not, we have a problem. We’re not planning for everybody. You’re saying that everybody else can get on this bus that we have repurposed to be you know, an evacuation, but we’re gonna go up this road and we’re gonna get everybody who want to come. Wonderful. What if I want to come and I can’t because there’s no way for me to get on this bus with my power chair. You can’t just put me on there and then I have no means of moving around once I get to my location.

TR in Conversation with Justice: 25:03

Yeah, absolutely.

Justice 25:05

When I first started to lose my sight, and I started taking courses that were related to activities of daily living, my instructor was also a blind woman. And she said that the difference between a problem and a crisis is time.

TR: 25:14
Remember that situation where the door to Justice’s building couldn’t open. That was a problem. But when you add fire and smoke, it becomes a crisis, the tenants working together that makes that building a community. Churches, social organizations, and even chapters of consumer organizations are all opportunities for mutual aid organizing.

Justice 25:35
I would also beg the leadership of those entities to consider how they are thinking of their whole community, how they’re thinking of people with disabilities, because like I said, we will make investments in certain things. But are those things accessible from the onset? Is it something that we have to complain about or somebody gets hurt or somebody gets left out, then we start to consider it. “Oh, wow, we had to leave Miss Jenkins at home, hope she’s okay when the waters was rising, because nobody had a vehicle that could get her out.” But this is our community, we love it. But yet we didn’t plan for Miss Jenkins.

TR: 26:06
For those who may think they don’t have any access to community, that online access can prove to be helpful in various ways.

Justice 26:13
Even by listening to a podcast like this is cultivating a connection with different streams of thought from other people. That also helps to decrease isolation, and also helps you kind of just learn different patterns and different practices that might be helpful for you.

I could get on these types of platforms and talk from sunup to sundown, and I still wouldn’t be able to give you a fraction of all that goes into doing disaster justice and Disability Justice work.

What we could do is build together and create a relationship so that we can stretch out as much as we can in terms of helping people to understand what will be the most useful for them. What is necessary for me as a blind woman is not going to be the same for somebody with a different type of mobility disability, we have to individualize our responses a bit more, as opposed to just saying people with disabilities need to do a better job of packing a bag and going.

TR: 27:08
This episode began with the idea of becoming more prepared in the event of an emergency, it evolved into a broader understanding of a more holistic approach to mitigating disasters. That is disaster justice.

Justice 27:21
Thinking about all of the different ways that people are impacted by disasters across a disaster cycle. So it’s not just during response, but it’s also during the preparedness stage. It is during the mitigation phase, it is during response, during recovery. It’s long term recovery. Recovery does not end when the cameras school, when

Are we thinking about this in terms of people who are the most directly impacted, also having lines of impact in terms of decision making authorities? Or do we only ask the people who are the most impacted? What are their thoughts in kind of a town hall setting and then we go back into our private conference rooms and people who don’t live in these areas make all the decisions, or people who live in these areas, but don’t necessarily represent the priorities that the people have go forth and make those decisions. Are people of color with disabilities being disproportionately impacted by such decisions?

I encourage folks to read the work of Alessandra Jerolleman who has a wonderful text out there about disasters through the lens of justice. She has kind of these four principles around what constitutes a just recovery. But you can apply that to nearly every phase of a disaster cycle, and really gain some in depth understanding. So what it means to do this work in a way that is far more equitable, but also far more effective in terms of centering the groups on the ground, who are directly impacted by these crises on a day to day.

Music begins – a synth and sounds of nature that opens into an uplifting Hip Hop groove.

TR: 28:48
Examining disaster through a justice centered lens requires an understanding of disability justice. Unfortunately, I see it used as a broad term that disregards his origin. Disability Justice is specific to the 10 principles articulated by Patty Burns and Sins Invalid. I’ll link to these principles on this episode’s blog post at ReidMyMind.com and encourage you all to read further.

Among the various resources Justice shared with us today, I’d like to make sure you point your browser to JusticeShorter.com. Here you can access some of her past speeches, as well as getting in contact with her. These conversations about disaster preparation can be heavy. So I had to find out how justice unwinds and takes care of herself.

Justice 29:29
I’m happy that you brought up this question because I think people need to have their own resilience rituals. And listen, that word resilience has really thrown a lot of people off because people in power tend to use that as a way of not giving people the type of support and material things that they need to meet their critical needs.

Oh, you’re just so resilient. We’re resilient because we have to be it’s out of necessity. It’s because you have refused to direct funding towards this neighborhood. When I talk about resilience rituals, I mean, the things that keep me getting up and going, and don’t get me wrong, there’s some times that you need to stay down, because rest is essential.

I have learned over the years what I need to pour into me in order to get greatness out of me, and that is not something that can be predefined by anybody else except me. I had to learn that because sometimes people will look to their supervisors or look to mentors, what do I need to do? What do I need to do?

TR: 30:25
Sounds like what we’ve been talking about, an extension of the conversation around safety, who really knows more about what’s best for you than you. For Justice it’s about gospel music, walks on her treadmill, family and

Justice30:39
Just hang out with my girlfriend and have a good dinner. We travel, we do all types of dates that are fun and spunky. And you already know, I love reading, there’s always a book that’s queued up for me that I’m excited to get into. Every time I travel to do a speech or to do things that are related to my job, I try to bake in some time for living life and going and exploring that city and seeing what communities of color are doing there. What are they eating? What are they listening to? How are they having a good time? I try to at least embed myself in the city or in the culture just a little bit while I’m gone.

TR: 31:13
This was a true honor to have justice on the podcast. And you all should know there’s only one way to make that clear.

TR in Conversation with Justice:

It’s a very simple way and it’s by letting you know that you, Justice Shorter are an official member of the Reid My Mind Radio family. So I appreciate you.

Justice 31:27
I appreciate you. Thank you so much. It was a joy.

TR: 31:30
There’s so much in this episode. I honestly think this is one to hold on to, refer back to. It’s a resource for real. A resource that will be right here for you. Wherever you get your podcasts.
Remember transcripts and more are at ReidMyMind.com.

And now, in case of an emergency, I need to make sure you know that’s R to the E, I, D!
— Sample: “D! And that’s me in the place to be!” Slick Rick

TR:
Like my last name.
— Reid My Mind Radio Outro

TR:

Peace

Hide the transcript

TR:

What’s up RMMRadio Family?
It’s me, T.Reid, host and producer of this here podcast.
This is your place to hear stories and profiles of compelling people impacted by all degrees of vision loss and disability. And yes, occasionally I throw some of my own experiences in there pairing those words and music and sound design.

Today, I want to jump right into it. We have a lot to cover.
So…

Audio: Reid My Mind Radio Theme Music

Audio:
* Rain Man – Dustin Hoffman

TR:

Each of these clips, are from movies featuring a main protagonist with a disability.

Audio:
* Forrest Gump – Tom Hanks

Yet, each starring actor does not have a disability.

Audio:
* Ray – Jamie Foxx

TR:

It’s not a new issue

* Audio: The Rear Window

A scene from The Rear Window with Jimmy Stewart, in 1954

* Audio: Wait Until Dark

And Audrey Hepburn portraying a Blind woman in 1967’s Wait Until Dark.

Audio: “The Upside” trailer

TR:

Most recently, Kevin Hart and Brian Cranston star in The Upside.

Cranston, known most for his lead role in “Breaking Bad plays a wealthy quadriplegic who hires a former criminal, played by Hart, to be his caregiver.

With fewer than 2 percent of characters in movies being a person with a disability, well it’s understandable that the disability community took to social media to express their disapproval.

Cranston’s reply?

According to a BBC report he said;
“If I, as a straight, older person, and I’m wealthy, I’m very fortunate, does that mean I can’t play a person who is not wealthy? Does that
mean I can’t play a homosexual?”

In fairness, he does agree that there should be “more opportunities” for actors with disabilities.

I guess just not those that he’s slated to play

Audio: “In the Dark” trailer

TR:

In the Dark is the new television show on the CW Network that stars Perry Mattfeld as a blind woman who is the only witness to her friend’s murder.

Perry herself is not Blind.

The NFB, National Federation of the Blind, believes this is not acceptable. The organization which says they have 50 thousand members in all 50 states including DC and Puerto Rico, began a campaign called #LetUsPlayUs.

I reached out to NFB’s Director of Public Relations, Chris Danielsen, to learn a bit more on what sparked the protest.

CD:

We’ve been concerned for some time that there are not opportunities for and roles for Blind actors. I know we passed a resolution at our National Convention in 2018 on this topic and I think we had passed one even before that.

Fast forward a little bit to early 2019 and the CW Network began heavily promoting its new series “In the Dark”. CW was asked why a Blind actress was not cast in this role and they really made excuses for not casting a Blind actor in the lead role of Murphy in their show.

TR:

According to TheWarp.com:
Nicky Weinstock, an executive producer for the show said:
“We went about searching for a blind actor immediately, and looked allover”

That included 29 different organizations for the blind where he said they were hoping to find the lead actor.

NFB’s Chris Danielsen had this to say about that.

CD:

We were not one of those organizations by the way.
And then they kind of said but we do have a blind writer, and a Blind Consultant and we do have a another Blind actress in a supporting role

They made those sound like compensations for not having cast a Blind person in the lead role.

TR:

You have to wonder, what do they really know about what it really means to be Blind.
Especially when you hear that same CW Executive Nicky Weinstock describe Mattfield as accurately portraying a blind person based on the committment she demonstrated after acquiring a cane and using it around her apartment for weeks.

CD:

This could be really tone deaf publicity on their part, but it’s pretty typical of the behavior that we see from the entertainment industry. There have been literally dozens of films and television shows about Blind people and in none of them that we’ve been able to find, was a Blind person actually cast in a lead or recurring role.
CD:

We felt that this is the right time to really respond to what the CW has said and done but also to this type of behavior that is just recurrent in the entertainment industry. And for that reason we launched our Let Us Play Us Campaign.

[TR in conversation with CD:]

Tell me what is exactly the objective of #LetUsPlayUs?

CD:

The immediate objective is to have the CW reconsider its decision to cast a sighted person in the lead role.

Given that they have really sought in a very discouraging way to justify their decision not to cast a Blind actor in the role, we feel like the only way they can really make it right at this point is to simply re-cast and re-think the show.

TR:

The showed debuted on Thursday April 4, 2019.

It doesn’t look as though this demand is going to be met.

There is time however, to expand the conversation about representation.

CD:

We have found over the years that a lot of the portrayals of Blind people are very inaccurate and often even offensive.

We want to engage in a dialog with the entertainment industry and talk about why it is that Blind actors are not cast. Why there are such low expectations for Blind actors and performers. And how we can work together; the entertainment industry and the National Federation of the Blind to actually identify Blind actors, to develop their talent and to actually see them included in the future projects so that those projects have an authentic perspective on blindness.

TR:

Disability representation in media can be categorized in four groups of characters according to a white paper recently published by the Ford Foundation.

Disability Activist and Senior Fellow at the Ford Foundation, Judith E. Heumannn authored the paper titled; Road Map
for Inclusion Changing the Face of Disability in Media.

The four stereotypes:
* THE SUPER CRIP – think Daredevil
* THE VILLAIN -The James Bond Franchise is known for many.
* THE VICTIM
* The Innocent Fool

I’ll link to the report on this episode’s post over at ReidMyMind.com.

The show’s trailer, gives the initial impression that “In the Dark” may not be too interested in changing the paradigm.

Murphy, the main character is shown trying to hide under a glass table.

Audio: The above scene from the “In the Dark” trailer
In case you’re new here, Blind people know glass is transparent and they know how it feels.

And probably even more concerning, the trailer includes what appears to be the ol’ feel the face!
You know that all too popular scene in just about any movie or television show featuring someone who’s blind where the brilliant idea comes to the sighted person to have the Blind person feel their face so they could know what you look like.

Audio: “Hello”, Lionel Richie Music Video
— From the video, Music plays and a telephone rings…”Hello” says the Blind woman in the video.

TR:

Hey how are you doing? This is T.Reid from Reid My Mind Radio. May I speak to the creator of this music video please?

— From video: Lionel Richie sings “Hello”

TR:

Lionel?
Was this video your idea?

— From video: Lionel Richie sings “Hello Is it me you’re looking for?

TR:
Well yes, if you’re the creator of the video.

— From video: Lionel Richie sings “Cause I wonder where you are”

TR:

My brother, I’m in the future.

— From video: Lionel Richie sings “And I wonder what you do”

TR:
Well, I host a podcast, it’s sort of…

— From video: Lionel Richie sings “Are you somewhere feeling lonely”

TR:

Well now that you ask?

— From video: Lionel Richie sings “Is someone loving you”

TR

Hey bruh, that’s personal.

— From video: Lionel Richie sings as echo and fades out “Tell me…”
— Music continues…

TR:

Look man, on behalf of Blind people around the world who have been asked to feel somebodies face.
You know, that thing in your Hello video.

It’s 2019 I think we can end this stereotype.

It’s 2019 & the results are in, we’re over it!

— From video: Door shuts!

Blind woman says: ” I’ve wanted you to see it so many times, but I finally think it’s done.”

TR:

At least I guess we can be happy that in the actual scene from In the Dark, Murphy was resisting and even protested saying that’s something Blind people don’t do, but her friend insisted.

We later see it was needed to advance the plot. This was how she identified her friends body.

I personally would have suggested something like Microsoft Seeing AI which allows you to take a picture of someone and it will recognize them in future pics. But maybe that doesn’t work for the rest of the show.

But that’s just me. Everyone is different.

Not all Blind people use technology.

Like any other marginalized group, we don’t all act one way, we don’t think the same and we all have our own voices.

In fact, I tried to get some individuals with opposing opinions to share them on this episode but I didn’t get a response.

Not everyone believes this issue should garner as much attention from the NFB.

Some believe, the hiring of a Blind writer, consultant and additional cast member are steps in the right direction.
Therefore, demanding the network pull the show well that’s not a way to open a dialog.

Most of the discussion I thought was valuable, focused on strategy.
That’s always going to be a source of contention.

TR:

On April 2, 2019, the NFB protested outside of the CBS offices, owners of the CW Network, in New York City. .

CD:

We had well over 100 Blind people from five different states, at least, participating in the protest. We protested for two hours

We told the CW Executives who bothered to look out the window or listen, we don’t know for sure that any did. We told them that Blind face is just as unacceptable as Black face for example.

TR:

In addition to the protesting outside of CBS, NFB and others have taken to social media including Facebook and Twitter.

[TR in conversation with CD:]

So Chris let’s talk about something because I was going to go one way but now I have to switch it up. The social media campaign, and I’m gathering that the future consists of continuing with the hashtag… (#LetUsPlayUs). One of the things that tends to happen around this topic is that comparison to people of color. I’ve seen things where people are saying “Oh you don’t want white people playing other nationalities, ethnicities etc. Even though that happens and it still happens today.

CD:

Sure, sure.

[TR in conversation with CD:]

I think that’s almost like, defeating the purpose, but then also the one you just mentioned which was the comparison of Blind face to Black face. What is the NFB’s position on that because in social media I notice that the official NFB account kind of stayed away from that. And I was wondering if that was on purpose or if that was just a coincidence.

CD:

Well to be fair that comparison came up in the protest. It wasn’t intended so much as a comparison as kind of a play on words I think when it was originated.

We are a diverse organization. We have a makeup of membership that is racially diverse, ethnically diverse different sexual orientations and all of that. We respect all of that, all of that diversity. That said, we’re not focused so much on trying to make that comparison. That said we do see some commonality in the idea that we don’t, we don’t allow people anymore to sort of appropriate and sort of pose as others. It does still happen, but there are areas where it doesn’t happen anymore and doesn’t happen as much as it used to . But so far disability isn’t one of those areas.

There wouldn’t even be a thought at this point of having, really seriously, of having a man play a woman. Back in Shakespeare’s time it was common for woman to be played by men, typically young boys. You did have situations where it was considered appropriate to put on black makeup. So why are those things largely gone and why is it still appropriate and considered the norm in fact to have non-disabled people play the role of people with disabilities. It’s the norm and it’s rewarded . Think about how often we’ve seen Oscars awarded to people for doing this; Dustin Hoffman, Al Pacino Daniel Day Lewis.

Audio: “And the winner is…” followed by each of the above winning Oscars.

TR:

Chris is right about that last part. Let’s take a look at some others who won in roles of someone with a disability.

Jack Nicholson, John Voight, Tom hanks, Ann Bancroft and Patty Duke both won for the Miracle Worker playing Annie Sullivan and Hellen Keller respectively.

And oh yes, my bad…
Audio: Jamie Foxx winning for Ray.

Does anything stand out to you about that list?
I’ll give you a second.

Audio: Jeopardy music

All but 1 are white.

Which brings me back to this idea of Blind Face.

That’s a made up term, it doesn’t have the history that is tied to how Black face was systematically used to dehumanize an entire race of people.

And it’s not gone.
.
Audio: Multiple news segments regarding Virginia Governor Ralph Northam & Black Face.

TR:
Even outside of medical schools in the 80’s.

Audio for below Two college girls suspended for Black Face
College campus frat parties still have it… sometimes they use different names but it’s the same. Parties where they dress like rappers. There was even a so called Gangster Halloween costume. And don’t get me started on other examples of appropriation.

Audio: About Redskins

Does it mean that those who used the term Blind face have the same intent?
I don’t believe that.

But what can we expect when this history isn’t taught, when people prefer to be color blind and refuse to have these conversations. Especially in this world of social media and the re-tweet.

There are valid and strong feelings in all marginalized groups. Something we all need to take into consideration.

CD:

We’re not Oscar bait. We’re people with real lives. We don’t exist so that actors can play us and feel good about themselves because they’ve supposedly experienced what we experience. Which of course they haven’t. That’s what’s really offensive.

I’m interested in your perspective too because you know we don’t want to make an offensive comparison. We want to be careful about that and at the same time the point that we’re trying to make is that there are situations where it’s no longer appropriate and the industry seems to understand that it’s inappropriate to have certain kinds of portrayals. Why is blindness and disability the exception to that.

[TR in conversation with CD:]

That’s where the difference of opinion definitely comes into play and I think the perspectives where you say that the industry understands that; I don’t think most people of color would say that the industry reflects their real lives.

CD:

Sure.

TR:

Remember those 4 stereotypes of disability in media?
* THE SUPER CRIP
* THE VILLAIN
* THE VICTIM
* The Innocent Fool

Black stereotypes have existed and continue to make up what we see in film today. Slightly modified versions of, well take your pick:
Sambo or the lazy happy go lucky Negro
Mandingo – the over sexed, big Black man
Mammy, subservient Black woman who’s nurturing ways usually focus on the white children
Jessabelle – over sexualized Black woman

So many films and television shows to this very day still have some version of these stereotypes.

In fact, as the years went by new stereotypes came into existence. The Welfare Queen, the criminal or thug and of course some of your favorite movies might star the magical Negro. who’s there to mysteriously make the white persons dreams come true.

Stereotypes also exist for Latinex, Asians and just think about the context of when you’d see a Native American on the screen.

So for those of us who are aware of this history in culture, hearing what can sound like an implication it no longer exists, well that can feel like all of that struggle and history is being erased.

With that said, let me make it as clear as I can, disability experiences deserve to be on the screen as much as any other human experience.

[TR in conversation with CD:]

You don’t have to make these comparisons.

CD:
Mm , hmm!

[TR in conversation with CD:]

There are comparisons that can be made. And the thing that I like to say is we can compare apples and oranges, they are both fruit…

CD:

Yeh, yeh, yeh. (In agreement)

[TR in conversation with CD:]
… but they are so different.

CD:

Yeh, certainly the intent is different. I would say that some portrayals of blindness have been specifically meant to put Blind people down, but some haven’t. There just profoundly mis-informed. So I totally agree with you, then in that sense it’s not an appropriate comparison. I think that’s why we have stayed away from the comparison on social media. We definitely don’t want to minimize the real pain that, that has caused, but sometimes the paper trail of disability does cause pain as well. Not the same kind, but the misconceptions out there are harmful to people with disabilities and they do trickle through.

TR:

Now we’re getting there!

Probably the strongest argument for increasing representation and the one that lots of people with disabilities feel on a regular basis.

Kristen Lopez:

There is so much mis-information out there about disability. Films are a gateway for us to learn about people and cultures different from ourselves.

TR:

This is Film Critic Kristen Lopez. She also writes reviews on new and classic films.
She has a much cooler way of saying it though.

Kristen Lopez:

Freelance Pop Culture Essayist, who writes a lot about representation in cinema, specifically gender and disability.

I’ve had so many embarrassing encounters with people. Unbreakable being a great example.

People who’ve seen the movie and they feel like that’s some sort of gateway into relating to me and it’s completely wrong.

TR:

Unbreakable, is the film starring Bruce Willis and Samuel Jackson whose character is a wheel chair user and has Brittle Bone Disorder, as does Kristen.

Kristen Lopez:

I refused to watch it because I didn’t think it was actually going to be a movie that represented me. And for a year solid when people heard I had Brittle Bone Disorder they were like oh have you seen Unbreakable? it’s great, you’d love it. And I was like, why would I love it. And they’re like because it’s about you.

I’m not a super hero or super villain

I was very indignant; no that’s not me. I actually never saw Unbreakable until two years ago and I thought it was fine. It didn’t offend me.

TR:

Dr. Adam Pottle, is an author and screenwriter in Saskatoon, Canada with
4 published books and two produced plays.

He himself is deaf.

He’s experienced firsthand how misperceptions and stereotypes find their way into common belief. Like this idea that Deaf people carry on conversations by reading lips.

As he explained to me via email.

(Note the change in sound when I am reading Adam’s words.)

Adam Pottle:

It’s not enough. Reading lips is fucking exhausting, and we don’t always get things right. We need visual confirmation, whether through Sign language or captioning.

I was bullied in school about my ability to read lips. Older kids would point to their lips and mouth out, “Hey deaf boy. Can you read this? Fuck you.”

TR:

The argument for representation is less about personal offense and more about the impact images have on society.

Kristen Lopez:

Movies have sold disability as this grand mystery. We are this enigma that unless the audience knows how to handle us their not going to be able to interact with us and I think that that’s very wrong.

It’s just important to get rid of the little things. We’re talking now about a time where politically people are talking about who’s entitled to what and who needs what. Do we need healthcare? Do we need the ADA at all?

I think a lot of that has to do with movies which fuel the dialectic, fuel the culture and presented disabled people which is entitled, spoiled and massively wealthy and doomed to die relatively young. The movies have sold us as a burden on society.

TR:

Interestingly enough, I read a review of The Kevin Hart and Brian Cranston film, The Upside titled;
“The Upside” is a good representation of life with disabilities.

I don’t know if this writer is disabled. It wasn’t mentioned.
But disability isn’t one size fits all. We can’t forget the intersections;
Gender, sexuality, …

And as Film Critic Kristen Lopez explains, it’s complicated.

Kristen Lopez:

As an adult, I’ve slowly grown to be like I do identify as white, but that’s only because my skin pigment is white. So I know most people, I tell them my last name is Lopez and they look at me and they’re like what the hell are you talking about. I don’t identify as Hispanic, but I do identify as Latino just because my father is.

Now as an adult as I’ve seen how white disabled narratives are it does bother me on that level as well because you know there are no movies with disabled people of color. There’s barely any movies about disabled women but disabled people of color is completely absent in these movies. That doesn’t even factor into people’s discussion of disability because they’ve never seen it.

TR:

Representation is more than who is on screen. It’s about who is producing directing, writing and in general influencing the overall message and feel of
the project.

Adam wants to add his voice to the conversation. Currently trying to make his way into the business. He’s an aspiring screenwriter with three horror scripts under his belt. He has a PhD in English literature, for which he studied how Deafness and disability are represented in Canadian literature.

Adam Pottle:

Because my scripts all feature Deaf and disabled characters in lead and supporting roles, it’s a bit difficult to get them produced, even if they’re well-received. I have one script, a horror story, that’s been selected by six different festivals that I hope to have made one day.

TR:

When it comes to inclusion of any form, the first reasons also known as excuses is often we can’t find “them”.

The CW, couldn’t find a Blind lead. Silicon Valley can’t find people of color in STEM, Corporations can’t find women executives.

Well, I have less than 600 Twitter followers and A Blind Black Man in the Poconos, Pennsylvania found a deaf white writer in Saskatoon, Canada.

(Laughing…)

So in the words of Mr. Biz Markie:
Audio: “C’mon, don’t give me that” from “Just A Friend”, BizMarkie

Adam Pottle:

The problem is systemic. The film industry is ableist to its core. It prefer stereotypical narratives. It doesn’t understand that Deaf and disabled people have rich lives with their own stories to tell. It prefers to look at us with pity and scorn. Recent examples include Me Before You, The Upside, Stronger, The Theory of Everything…

Notice these films all feature white actors, too. We don’t see Deaf and disabled Black characters, or Indigenous characters, or Asian characters. We don’t see LGBTQ2+ disabled characters.

Deaf and disabled people must be allowed to tell their own stories, from the ground up, as writers, directors, editors, photographers, producers, costume designers, and of course actors.

TR:

So #LetUsPlayUs, I’m with that. But can we let disability drive the conversation. Call out the many valuable reasons for representation and inclusion and rather than using the history of others as catch phrases use the lessons and honor those who paved the way.

I think we can agree the more marginalized you are in the society the lower your chances of seeing a real representation of yourself. Go ahead and think about the various marginalized communities. As you filter and each segment appears to have less and less representation not only in society but also on screen.

Just imagine if rather than re-booting movies and shows from the past, Hollywood start out by seeking multi marginalized Non Cisgender women of color with a story to tell.

As Adam Pottle points out.

Adam Pottle:

the first producer or major studio to truly recognize the potential of disabled filmmakers and disabled actors will experience a tremendous cultural and financial windfall. There are over a billion disabled people worldwide. We want to see ourselves onscreen. When we do that, disabled people will come out in droves, leading to changes in theatre spaces and screening options. In short, disabled people will change the way the world watches movies.

TR:

We’ve literally already started that process; Caption and Audio Description have already begun seeping into the mainstream.

So let’s continue.

By the way, the reviews of “In the Dark” are in & mixed. I started watching the premiere via the app but there’s no Audio Description. I don’t believe it’s offered by the network. One review had this to say:

“One thing In the Dark does get right is that the blind characters are completely in control. There’s a murder mystery at the center of it, but the real thrill is watching Murphy live such an imperfect, independent life. She goes out; she smokes cigarettes; she has sex—these are things we rarely see blind
characters do onscreen.

TR:

Seriously? Yawl need to go to a convention!

Apparently 80 percent of the writing staff is made up of women and several LGBTQ+ and blind writers and led by a female
showrunner.

And Calle Walton, the young lady who is Blind and part of the cast, said:

“When I lost my sight, I was devastated. I had to throw my acting dreams away. I thought there was no way I could become an actress now that I was blind. This experience has just been amazing:
getting me back on my feet, getting me back into my love for acting. I hope this really opens up the field and it makes it so blind people are getting looked at as characters that can play roles, instead of sighted people playing roles as blind people.”

Same goal, different strategy!

Shout out to :
Chris Danielsen , Director of Public Relations for the National Federation of the Blind.
You can find out more about them at NFB.org. And #LetUsPlayUs on social media including Twitter and Facebook.

Freelance Pop Culture Essayist, Kristen Lopez. You can find her work on line where she’s written for Rotten Tomatoes, Forbes.com and other outlets.
She has two podcasts;
Ticklish Business – all about classic movies before 1970
Citizen Dame – she’s joined by three other female film critics talking all about the latest entertainment news from a feminist lens
You can find Kristen on Twitter
@Journeys_Film

Dr. Adam Pottle is @AddyPottle on Twitter (Also spelled out)
His website is www.adampottle.com
He has a new book out now title Voice.
Where he explores the crucial role deafness has played in the growth of his imagination, and in doing so presents a unique perspective on
a writer’s development.

I think it’s clear that there’s a lot tied up in this topic of representation.

Consider this episode as just the opening of this discussion here on Reid My Mind Radio.

I hope to bring you more in the future which will include highlighting those behind the scenes as well as in front. I got my eye on some talented peeps.

You know there’s only one way to be sure you don’t miss an episode…

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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.
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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.

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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

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
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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!

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