Reid My Mind

TR:

Greetings everyone, from at least 6 feet away!

First and foremost, I hope everyone is doing well, and you each are as comfortable as possible. Most importantly staying safe and keeping each other safe by following the recommended protocol.

for right now, I’m going to keep my Corona Virus thoughts and observations to simply wishing you all the best. And reminding you all to protect yourselves physically but also pay close attention to your mental health.

By the way, my name is Thomas Reid host and producer of this podcast where we bring you compelling people impacted by all degrees of blindness and disability. Occasionally, I share my own experiences as a man adjusting to becoming Blind as an adult. All of this by the way has been brought to you since 2014 from the safe and sanitized studio located in my home. So really, ain’t nothing new here folks! We’ve been riding ahead of this curve for a minute!
Now, only one way to start this episode…

Audio: Water flowing from sink…

TR sings…

“Wash your hands, Wash your hands, Everybody wash your hands.
Wash your hands, Wash your hands, Everybody wash your hands.”

Audio: Reid My Mind Theme Music

MS:
I’m Matthew Shifrin and I’m a Blind Musician and Inventor.

TR:

You may be familiar with Matthew. He’s received a fair amount of press in regards to his work with Lego. Specifically, his work making Lego instructions accessible to Blind children.

It all began when he himself as a five or six year old child followed a very specific instruction given to him by his close family friend.

MS:

Lilya who later created the text based instructions, she and I were driving back from somewhere , she stops the car and yells “Get out.” Ok, I get out. She says pick up this crate. This crate is like half my body weight. And so we manage to muscle this crate into the trunk of her car and she’s like, “C’mon open it.” I open it and this crate is full to the brim with Lego bricks.
And that’s really how my journey with Lego started.

TR:

Matthew began building Lego sets with the help of his parents.

MS:
Because they could read the instructions and I couldn’t.

TR:

Lego instructions are visual. They’re diagrams detailing how to connect the various pieces completing the design.

MS:

We were mainly building bionicals. , which were these action figures that Lego made. They were very formulaic. If I built one of them, then I could build the rest of a certain type on my own. Those were the only types of sets I could build on my own.

TR:

Building the sets required the help of Matthew’s parents.

MS:

So they’d just say okay you need to find such and such piece. I’d go scrounging around the bottom of the box to try and find something and then they’d say okay well here’s where you put it and I’d put it there and we’d go piece by piece. It would just take 4 to 5 hours to build a $20 set that was 200, 300 pieces.

TR:

While appreciative of his parent’s dedication and time, Matthew recognized the difference between his Lego experience and that of his friends.

MS:

They were building sets all the time. They’d come into school and say hey I built a spaceship yesterday and I’d say oh that’s so great. How did you do it? Then there’d be silence and they’d be like well, I looked at the instructions and they told me what to do and I just followed them. I just remember thinking all this time I wish I could do that.

TR:

In case you’re thinking Lego is just a toy.

MS:

When we look at Lego instructions they really provide a lot of insight into how things are made. How things are built. How mechanisms work.

And when I built on my own I really had none of that vocabulary.

TR:

This was evident from the experience his sighted friends had with Lego.

MS

they could build trains that ran, crossbows that shot actual darts because they were familiar with the engineering concepts that made these devices work.

TR:

Working with his parents gave Matthew[emphasis on some] some insight…

MS:

But as the Blind builder I was just following directions. I had no idea where we were going. yes, I knew it was some sort of frame that we were building but I had no idea what it would end up looking like. As opposed to the parents who did. There wasn’t a lot of vocabulary gained even then because I couldn’t see the instructions on my own I couldn’t flip ahead. I couldn’t imagine structures in my head because I had no vocabulary

TR:

Remember Lilya, the family friend who had Matthew lug that first box of Lego bricks into the car? On his 13th birthday, she brought him the next step in his access.

MS:

She gives me this big cardboard box with a big fat binder. And mind you this binder is thick, we’re talking two copies of the yellow Pages thick. In this binder there are these instructions that she’s hand Brailed on a Perkins Braille typewriter. And in the box is this Middle Eastern Lego Palace. This palace was big, 830 – 840 pieces. these instructions she created completely on her own. She invented her own vocabulary to name every type of Lego piece that was in that set.

TR:

That was the vocabulary Matthew longed for.

MS:

Put a flat 6 by 1vertically on the table. Put a flat 2 by 1 on its rear most button over hanging to the right horizontally. Put a flat 4 by 1 vertically to the front.

I got to a point where I was able to read instructions and imagine what it would be like to build a certain model or a certain sub section. That’s just spatial awareness, spatial reasoning, these sighted skills that are developed over many years in sighted children. The fact that I was able to really visualize on my own was a very valuable skill and I would argue an under taught skill when it comes to Blind children.

TR:

Getting access to Lego instructions was just a part of Lilya’s goal.

MS:

Her goal was that I should have the same experiences as other sighted children. And so she brailed board games, she brailed books. She did all of tshe did all of this stuff, but Lego was just the one thing g that she could not figure out how to make accessible for many many years just because the instructions were pictures.

TR:

Once Matthew gained access.

MS:

I just wanted people to have this resource because I’d benefited so much from it. Not all Blind kids have people that could write instructions for them. Everyone deserves to be able to build and to learn from what they’ve build.

TR:

making this information available to other Blind children required some steps.

MS:

We had to create more instructions, build more develop some sort of language. Make sure that this was durable and then we had to get it out to Blind people. I think Lego themselves were always an end goal but Blind people had to come first because we had to be sure that Blind people could engage in this content as much as I could.

TR:

Realizing the instructions could be produced digitally, eventually led to the website.

MS:

LegoForTheBlind.com where all our instructions live. there’s 30, 40 sets there.

Our end goal was always getting it to a larger entity.

[TR in conversation with MS:]

Would you consider yourself an advocate?

MS

Sure. Advocacy is like a blob, you can shape it mold it. One might argue that lilya making those instructions was advocacy. After she made those instructions and we had that website, I’d always wanted to get it through to Lego but I really didn’t know how to go about it. To infiltrate such a massive company you need to know people.

TR:

His first attempt, contacting Lego customer service didn’t yield any results. But sometimes, all you need is to know someone, who knows someone…
MS:

I was interning at the MIT Media Lab. I had a friend who worked there adn there’s a group there called the Lifelong learning Kindergarten Group and they have a very long and fruitful collaboration with Lego themselves. So I went to this friend of mine and said hey I have this project and I told him about the project and he said yeh, I have a friend who just moved to Denmark two weeks ago and he’s working with Lego. I’ll send your story along to him. We’ll see where that gets you. This friend of his emailed back and he said oh yes this is a very interesting story I’ll send it to the head of the new projects division which is like Lego’s version of DARPA, all their secret mysterious projects that no one really knows about until they get released. Then when I got in touch with this guy Olaf Gyllenstenthat was really a pivotal moment

because this guy was in on it. He wanted this to happen as much as I did.

TR:

That’s known as an internal ally. Someone in the organization to help advance your cause.

MS:

Mind you this guy had no connection with Blind people. He had just never thought about Blind children as a possible segment of people who could enjoy Lego and their instructional aspect just as much as sighted children. Just because he never met Blind children. When he realized this impact that this could make on Blind children, he bulldozed his way forward through the ranks of the company. He talked to the head of Lego Niels B. Christiansen who runs the company now and Christiansen was very enthusiastic and when your project goes that high up , it’s going to go somewhere.

TR:

And it did. Lego decided to produce the instructions.

MS:

The Lego Foundation, they’re kind of their charitable we have cool projects arm. They were showing off these instructions and they wrote me an email and said we have a press conference we want you to present. Could you come and we also want to introduce you to all of the people that have been doing this. Could you spend six days in Denmark. (Laughing…) I was like well, I guess I can. It was a conference of Lego fans. They are very committed. They have blogs and websites, YouTube channels. We’re showing the kind of text based instructions and comparing them to the graphical ones and just kind of talking about the thrill of being able to build on your own. Just the response form these people was amazing. They and I are just united by a love of Lego. It was amazing to see how touched these people were by these instructions and by the spreading of this medium to people who previously could not engaged with this medium as your average sighted person could. That was just a really energizing moment.

[TR in conversation with MS:]

Are you still working with the company?

MS

Very much. I do quality assurance. Checking instructions and making them as understandable as possible. We’re hoping to have 25 to 30 accessible instructions out in the next couple of months for sets that are currently out.

TR:

Users will be able to purchase a Lego set from their favorite retailer and download the instructions from the Lego website, LegoAudioInstructions.com.

MS:

Hopefully they’re also going to redesign their packaging so that they can Braille the numbered bags. I don’t know how long that’s going to take but that’s just something they’ve been looking into and hopefully that would happen.

[TR in conversation with MS:]
Wow!

TR:

I really shouldn’t have such a reaction in 2020. Unfortunately, the response from Lego, isn’t the norm. Even companies who make they’re product accessible, packaging, well that’s another story.

MS:

When Lilya and I were making these instructions on our own we really wanted Blind children to have the complete experience of building the set. So we would describe the box art and the advertising from the back of the manual and the art and the little prints on the Lego people because we really wanted the Blind child to engage with the set as much as the sighted child could. And it’s wonderful to see that carry over to Lego’s instructions. They describe the little Lego people and they describe this and that . They really tend to energize the experience. They really guide you through the building process and they complement you once you finish something they’re like congratulations you finished the car. An adult might kind of get annoyed by that but for children this is what they need when they’re fist getting into Lego. It’s really important for them to feel really included in the process and engaged by the process not just I’m stacking pieces but hey I built a thing. Now I can revel in this thing and then can move on to the next part of the build the fact that Lego are really making their instructions so human, I’m very glad that they’re doing that.

[TR in conversation with MS:]

It’s funny because you said adults can get annoyed… I don’t know, I guess because I’m coming from a particular perspective…

TR:

I wasn’t a Blind child. I don’t even recall having any Lego sets growing up.

When I became Blind as an adult, I had small sighted children, but man, I wish I had a Lego set with accessible instructions to actively engage in with my kids.

I did have a set of Braille Uno cards. That was one of the ways I practiced Braille. Unfortunately my daughter only three years old then would beat me constantly and it just wasn’t any fun! And for the record, I didn’t let her win. I’m not that type of parent. She was just a little card shark. I’m still not over that!

Matthew recently found a cool way to pair Lego bricks with a new interest.

MS:

A few months ago I started climbing with a team of disabled rock climbers. I saw that the Blind rock climbers were really struggling because there’s a person at the bottom of the climbing wall who yells directions at you. And that’s great because then you can get up to the top, but you have no opportunity to think ahead and really plan for yourself. As opposed to the sighted climber who’s able to come up to the wall look at it and really strategize as to where they put their various appendages. I thought well wouldn’t it be cool to make a Lego based mapping system for rock climbers.

TR:

Next time he went to the rock climbing gym, HE brought his Lego bricks and figured out a method for mapping the wall.

MS:

Different types of pieces are used for different types of holes. Two by ones are jugs which are large rounded holes and then one by ones are crimps which are smaller holes. Three by ones are legends and one by one flat round pieces are foot holes.

TR:

The map is laid out by working with that sighted person who yells directions.

MS:

They can do it in a matter of minutes. A minute or less. And so this could easily be used in climbing competitions.

[TR in conversation with MS:]
And then the person right before they’re climbing could actually kind of go through it . Now do you retain that information?

MS:

I try to retain but sometimes when someone yells out it’s also useful because you’re able to correct yourself on the fly and you’re able to kind of rethink your process if you’ve taken a slightly different path up than you initially estimated the yelling person is really valuable because they’re able to make you reassess your situation in a very sensible way.

[TR in conversation with MS:]

You’re younger than me man, I don’t retain as much anymore. Laughs…

Has this an impact on your view of advocacy? Do you have intentions on kind of moving forward and doing more of this type of thing?

MS

I have a comic book accessibility project where I’m building a virtual reality headset for Blind people with engineers at MIT. This headset makes you feel different motions by affecting your sense of balance and messing with it.

TR:

It sounds like the lessons learned with Lego are being applied to his latest project.

MS:

I thought about the way comics were made. I found that comic books run on scripts. These scripts are like movie scripts that they’re incredibly detailed and they tell the artist exactly what to draw and how to draw it. I thought this is our way in. What I need to do now is to network with authors and artists and comic book companies and really energize them. I’ve been in talks with Marvel Comics and combining this helmet that we’re working on with their comic books really provide a new dimension to their work via blind or sighted

The total strangers who owe you nothing but who are still incredibly enthusiastic. I go to comic book conventions every year to network with authors and kind of tell them about it engaging aspects of advocacy the project and Blind people and how comics help Blind people learn about the world around them.

These people are really energized by the fact that comics are being interpreted in a new way. I’m a random Blind guy with ideas. When I come up to their table and say I’d like to kind of look into how you write. Are any of your scripts available on your website? Could I figure out how to do this and make this accessible? They don’t owe me anything. They could say, sorry I only sign books goodbye. But no, they’re thrilled that comic books are going beyond the newsstand, beyond the bookshelf even beyond the television screen into new medium. The more success you have with advocacy the more energized you are to go out there and advocate more and make more things accessible to Blind people or disabled people or whoever.

TR:

Matthews latest project is looking at a different sort of access.

MS:

We have practically no Blind people in the mainstream podcasting space. And it’s interesting because podcasting seems to be such a Blind friendly medium, but when you look at places like I don’t know MPR, major broadcasters no one there is Blind. I started a podcast called Blind Guy Travels. First couple of episodes are hopefully going to come out in a month or two. It takes these mundane experiences like going to the movies or gestures or making funny faces from the standpoint of a Blind person. I’m doing it with Radiotopia who are kind of the podcast branch of NPR.

TR:

To me this story of making accessible Lego instructions is not only about the power of individual advocacy, the importance of stimulating a child’s imagination but also one of friendship and commitment.
MS:

When Lilya died she left a couple of instructions for sets that we hadn’t built yet. And it’s interesting now finishing those sets and building them and just kind of keeping the energy alive. Lego will do their own thing but hopefully Lego for the Blind will do its own thing just because Lego are going to start adapting from a certain year. Everything before then will be inaccessible. I have a list of sets that people want made accessible. The goal will be to find instruction writers. I can teach them easily how to do this and the goal will be to find instruction writes and to teach them to craft instructions and to keep the Lego For the Blind website growing and going beyond what Lilya and I have done.

TR:

How many times have we heard; a picture is worth a thousand words.

I don’t think we need a thousand words to describe the benefit of making the images that are the Lego instructions accessible.

MS:

I just remember building that set and feeling completely (exhale…) very free!
TR:

If you’re interested in helping this effort or just want to know more about any of the projects mentioned or more about Matthew including his music, contact him.

MS:

On Lego For the Blind there’s a contact uplink at the bottom and they could find me there. On Twitter @MatShhifrin Mat with one t. And on YouTube I’m Shifrin2002.

TR:

If you liked what you heard hear, all I ask is that you share the podcast. It’s safe, you don’t have to be within six feet of anyone to do so. Just send a text, email, a tweet a post on FB. Let them know you’re listening to something that you find enjoyable and informative.
It’s available wherever you get podcasts. And transcripts and more can be found at ReidMyMind.com. Just make sure you let them know, it’s R to the E I D (Audio: “D, and that’s me in the place to be” Slick Rick)

TR:
Like my last name!

Audio: Reid My Mind Outro

Peace!

Hide the transcript

TR:

What’s up Reid My Mind Radio Family?

Yo soy Tomaso, Thomas Reid, host and producer of this podcast – Reid My Mind Radio.

Welcome to those of you who are new here.

This podcast introduces you to compelling people impacted by all degrees of blindness and disability.

every now and then, like today’s episode, I share some of my own thoughts and experiences as a man adjusting to becoming Blind as an adult. And yes, I say adjusting, I don’t think I’ll ever really use the ed suffix on adjust. That’s not to mean there’s no progress. It’s just a continuous journey. Once you get to the understanding that it’s not one to be feared or even think negatively about, it gets better. But It’s like life, there’s always going to be change, and vision loss or any disability is now a part of that.

If that’s part of your reality, a family member or friend or maybe people you work with, well you’re definitely in the right place. If you yourself are going through some other sort of life change or you just like podcasts. There’s something here for you too, if you are opened to that.

Everyone is truly welcomed here with the exception of those with real hate in your heart. Energy works in mysterious ways and I don’t want that negativity being passed along to me or any of the family.

So let’s get this poppin!

Audio: Reid My Mind Radio theme

# Intro

Today I’m sharing some thoughts about this podcast. These are not stream of consciousness. No way I wouldn’t do that to you. My mind can be a scary place when I’m trying to figure things out.

Audio: Sound of chaos!

Chances are as I navigate these thoughts they will prove to be applicable to more than this podcast and hopefully useful to others. That’s exactly how I feel about every episode. I focus on those adjusting to blindness , but lots of others can relate and enjoy.

Audio: Typing sounds….

Since I began this podcast and maybe even prior, I have been very specific about saying I don’t see myself as a journalist. I’m an advocate, straight up! If you listen to the podcast, you know there’s a certain message about blindness and disability. My opinion or feelings in most cases are evident. The overall message is one of empowerment. I’m not impartial.

Audio: Possibly use old episodes here

As if journalism is really impartial.

There are times though when I need to make all sorts of journalistic decisions. It could be the way I edit or the specific questions I ask, even the overall feel of the show, the sound design. It’s intentional. My approach is different from your standard so called impartial reporter.

I’m connected to most people who are guests on the podcast. Usually, the connection isn’t personal. Rather it’s through blindness and disability Sometimes it could be race or we have something else in common.

I feel a responsibility to both my guests and listeners.

I want my guests to feel what I hear when they tell me their story. I want them to know I respect them and their experience.

I want listeners to find the multiple ways they relate to my guests. Yes, there’s the disability experience, but maybe they share a similar motivation, desire or goal.

That’s what I want, it doesn’t mean I can always make it happen.

every listener brings their own past, prejudices, preconceptions and experiences to the podcast.

That makes sense, it’s like anything else. Two people hear the same song , see the same film or read the same book and have drastically different interpretations.

Some people see a reflection of their own lives and goals while others never see themselves in a podcast where blindness and disability is so prevalent.

It’s probably not one or the other. I think there are some who have a bit of both. Either way, I can’t control that.

Which leads me to this statement…

“You should always remember, there are people worse off than you.”

Audio:

“No matter how you’re sad and blue, there’s always someone who has it worse than you”, Shaggy

YouTube Videos
* ” If you’re having a bad day, just consider the day ….”

* “Bare in mind, there’s always someone worse off than you”

Song sung by Little Richard at a MS Telathon.

“… As I look around, so many people who cannot walk, not talk nor see, I thank God for the health and strength that I have, for there’s someone worse off than I am.”
TR:

First things first…

I’m pretty sure I said this same thing at some point in my life. it’s a common statement and an accepted way of thinking.

But, what does it really mean?

How can you compare someone’s life and happiness without all the information??

Is this really pity?

As a content producer, I cringe when I hear it now especially in relation to my podcast.

There’s never been a guest on Reid My Mind Radio that’s in need of someone’s pity.

I then question the choices made for that episode

Did I present this person in a way that says they should be pitied?

I don’t think I focus on the illness side of things. I do include or mention mainly because;
Others with the same diagnosis can relate.
It can also serve as a way to normalize illness and disability. They are a part of life and not a mysterious thing that happened to one person.

AudioFx: Ambiance head in skull
Am I creating inspiration porn?

Most of you are probably familiar with that term. It’s the
idea of presenting people with disabilities as inspirational solely or in part on the basis of their disability.

This idea that this person’s story which often you don’t even get, well it should inspire you or just give you that warm fuzzy feeling reminding you that most of the world is so considerate.

Watch how the rest of the high school students cheered on as the coach let the intellectually disabled kid in the game for the last 20 seconds.

News Report Audio:
Crowd cheering.Coach: He comes to ppractice everyday, he shoots with them, he cheers them on…”

TR:

Or…

News Reports:
Reporter 1: A very special student indeed…
Reporter 2: All thanks to the compassion of one of his classmates….
Reporter 3: But the emotion of this night involved a student who cannot take the field, but is universally admired for his determination…
Reporter 4: A special needs student with Williams Syndrome. He’s a fixture on the sidelineduring football games always rooting on the team. But hi fives are one thing senior prom is something different.
Student: She could have picked anybody to go to prom with.. her.

TR:

I just don’t want to put that sort of thing out in the world.

Does it sound like I’m making a big deal out of this? Maybe because I’ve seen inspiration porn live and in full effect. In fact, I unknowingly was recruited to be a part of the performance.

Audio: Dream Harp

Many years ago when I was still very new to blindness, I was asked by a local organization serving those with vision loss, to give a access technology demo during an event.

I took to the technology pretty quickly and they thought I could be helpful sharing that information.

There was no money involved of course, but they’d provide my transportation and I think there was going to be a lunch. Whatever, I was down to help the cause for sure.

I was setup y’all!

Arriving at the center, I was shown to the main room where the event was taking place.

There were three or four individuals with vision loss seated up in the front of the room. The rest of the group was seated around a large conference table.

I was shown to a table in the front of the room off to the side where I setup my laptop.

Shortly after, the host of the event, the director of the center, welcomed the guests and kicked off the agenda.

Each of the men and women seated in the front of the room were asked to share the story of their vision loss.

Here’s how I recall that event;
Audio: Trap Beat!

each individual told their story while the event host accentuated the misery.

Storyteller:
” Before I went blind, I used to take long walks in the park
Now, I can’t see anything, my whole world is dark!”

Host: “Pitch black, the world is dark, too dangerous for you in the park.

TR:

Laughs! I said, that’s how I recall it today, but that’s not exactly what happened. But I do recall the questions and comments from the host were obviously selected to highlight the negative.
She was playing to the fear of the guests seated around the conference table.
these were potential donors.
All who probably already had beliefs about blindness;
“it’s probably the worst thing that could happen to you and if we don’t help these poor people they won’t be able to do anything. They can’t do for themselves.”

I was setup to be a part of a dog and pony show to help fundraise for the organization.

the fact that it was a fundraiser isn’t the problem for me. I would have still agreed to attend.
However, I would not have participated if I was aware of the approach being used to raise that money.

My so called presentation was probably less than 5 minutes. The host asked some specific questions and then made it seem like it was my technology background that enabled me to grasp the tools and less about the technology as a tool for independence.

Then they pulled out the glasses.

Audio: Glasses clinking and sliding down a bar!

No, not drinks. I don’t even think that would have helped. . No, it was the blindness simulation glasses. These are created to help sighted people understand what it supposedly looks like when you have certain diseases like, macular degeneration, RP, glaucoma and others.

At first thought, you may think ok, that’s probably helpful. It helps people understand and therefore empathize? Sympathize?

Well, in this particular case, while the dog and ponies sat up in front and this one off to the side a bit, the sighted donors were led into their temporary world of vision loss.

Reluctantly at first, one after the other each slowly began trying on the glasses.

“Oh my”…. “wow”
“where did you go Jeanie?”

And then the real fun began as they exchanged glasses with one another. Laughing as they realized how little they could actually see. Unable to find things they placed on the conference table. The host joking as she moved their cups of coffee.

Meanwhile, the dogs and ponies sat up front. While the jackasses continued with their disability experiment.

Empathy, I didn’t see that. But a check was written.

I don’t remember how the event finally ended, but I do know that was it for me. I checked out. There may have been some additional conversation but I doubt I had much to say to anyone after bearing witness to that display of ableism. I vowed to never be a part of anything even remotely like that.

I could easily imagine each of the donors around the table going home fulfilled and thinking “I should really count my blessings, because there’s always someone worse off in the world.”

As far as I could tell, I was alone in my review of the event. I believe some of the others continued to participate. I pretty much severed ties and ended up having a sort of reputation, so I was never asked again. perfect!

All of this leads to my final question.

How are we telling our own stories?

I highly doubt any of the people sharing their story were given instructions on how to tell it. Chances are, the director simply knew these individuals would supply what she wanted for the audience.

Some may say the ends justify the means. The center received the money and therefore can do good things for the clientele. I don’t agree. I believe several of those in the room were employers in positions to someday hire a blind person. I doubt they would. But that’s a subject for another day.

What thought do you put into telling your own story?

In most instances, we’re doing the telling of our own story. We don’t have a videographer, podcaster, journalist.

We’re probably not standing in front of an audience equipped with a PowerPoint presentation. We’re simply talking to people. Most often one on one.

Crazy thing, I tell other people’s stories but not my own. I can do it in a presentation, no doubt, but one on one not so much. I feel strange.

Audio: Cameo Strange! moves into “Children’s Story” Instrumental Slick Rick

I should tell my story as if I’m giving a presentation. it’s mine, it’s a good one. It’s worth telling. It can be helpful.

And it’s the only one I have.

And in the event someone hears it and their thought is
“Wow, I’m so grateful because I’m not like Thomas!”

My response, Bruh, you should be so lucky!

I’m not flexing’ or being conceited or anything like that. But this is my life why shouldn’t I be proud of what I do, when I do it and how I do it.

the same decisions I make for my guests and you all the listener, shouldn’t I put that much time and thought into my own story?

If you say yes, then maybe you too should do the same.

I told you this wouldn’t just be related to podcasting. In fact, it’s not just related to disability.

Or is it?

“Here we go!” Slick Rick, Childrens Story

You can find Reid My Mind Radio wherever you get podcasts. And if for some reason that isn’t the case, like teddy said, come on over to my place… ReidMyMind.com. That’s R to the E I D

Slick Rick “D, and that’s me in the place to be”

Like my last name.

Audio: Reid My Mind Radio outro

Peace

Hide the transcript

TR:

Audio: South Bronx, Boogie Down productions

Yo, what’s up Reid My Mind Radio? I’m your host and producer, T. Reid bringing you another episode of what I hope is your favorite podcast. I don’t know if that’s really the case but I’m going to say if you’re a person adjusting to Blindness, adjusting to Low Vision or disability in general this is definitely a podcast with you in mind.

If you’re new hear welcome! Just about every two weeks or so we bring you a profile of a compelling person impacted by disability most often blindness or low vision. Sometimes I bring you a story from my own experience as someone becoming blind as an adult.

Chances are if you’re new here, you’re like wow, this doesn’t sound like we’re about to talk about disability. Well, that’s how we do it here.
Disability doesn’t look one way. It doesn’t act one way. It definitely doesn’t sound one way.
In every episode, we hope to challenge your beliefs around blindness and disability. even if you think you are already quite familiar. Today’s episode is no different.

By the way, you’re listening to a track by Boogie Down Productions called South Bronx! A personal favorite of mine and in my opinion the official unofficial anthem of the borough.

Since we’re all about challenging beliefs…
I can’t tell you how many times throughout my life when I proudly declare my birthplace only to have people either look at me just a little differently or outright say something offensive or judgmental. Showing their familiarity with the borough is probably based on the images of the 1970’s. The burning buildings and the poverty and crime. They don’t see the beauty in the diversity, the culture and the people.

Today, my guest also hails from the BX so it just seemed appropriate. Truth is I’ll take advantage of any opportunity to include Boogie Down Productions in the podcast and let you know where we come from…

Audio: “South Bronx…” from Boogie Down Productions

TR:

BX, let’s go

Audio: Reid My Mind Radio Theme

Bri M.

“I want to float above the lane. That’s my state of existence.”

TR:

Meet my guest, Bri M.

Bri M.

I’m a podcaster and I like to be an agitator because I like to interject disability justice in the conversations I have . I’m politically minded about what it means to be a disabled person of color in America today. My podcast is called Power not Pity and it’s about the lives of disabled people of color. I try to preserve and amplify the voices and lived experiences of disabled people of color through the show. We talk about our experiences. We talk about what we’re going through and how we can dismantle ableism with every episode.

## TR

Managing all production aspects of the podcast including interviewing and editing, Bri is also host. That’s the Bronx spirit yawl… it’s how we do!

I’ll try to go easy on the Bronx love but the truth is I try to find that common thread between me and all of my guests. It just so happens Bri and I share several experiences. But it’s the differences which makes the conversation even better.

Beginning our interview, I wanted to be fully sure about all aspects of Bri’s identity as noted in the following bio:

Bio:
Bri M is a Black, Jamaican-American,
queer, non-binary, disabled alien-prince from The Bronx.
Ze’s pronouns are ze/zir.

[TR in conversation with Bri M.:]

…So what does all that mean?

Bri M.
What does all that mean?

[TR in conversation with Bri M.:]
I know the Jamaican American part (laughs…)

Bri M.

I think all of the other things I say they all intersect into creating the person that I am.

I think what I wanted to express by saying all of the different parts of me is to really display that disabled people are a myriad of things. Especially when we’re racialized in society as Black people as Black disabled people. We face such hardship that white disabled people don’t even understand.

I want to name who I am because I think representation matters.

So I say that I’m a non binary person to because if we don’t go out there and speak about who we are we won’t be known as human beings. I put myself out there as non binary because I want to combat the idea that non binary people are usually seen as white you know the typical image. When you go into a Google image search for something and you search for non-binary what you’ll get in images is usually white people. I want people to make sure that people know that black non-binary people exist. Black disabled non binary people exist.

[TR in conversation with Bri M.:]

No doubt.

Audio: Free Your Mind & Good Thoughts Bad Thoughts by Parliament Funkadelic

[TR in conversation with Bri M.:]
What’s the Alien Prince because when I hear that I’m like ok is this Alien Prince on some George Clinton …

Bri M.

Yes, yes definitely. I’m very influenced by that. I really do think that as a Black person in society today like this apocalyptic society that we’re living in I really do feel like I’m not from here. I’m not from where we are on this plane of existence. I really do think that Black people are not from here. I’m really on that Sun Ra tip like space is a place you know.

Because I identify as an Alien Prince I want people to know that I’m a part from mainstream society because I can see… I live on the margins of society right, as all of the things I named who I am so I can see how society works because I’m on the outside of it. I want to name that. By saying that I am Alien, I’m strange, I’m Black and apart from mainstream society because that’s just how we have been oppressed and forced into being so I want to highlight that and I also say that I’m a Prince because I think I deserve to be seen as royal and I deserve to be… to accept the part of who I am that wants to be valued.

Because I’m an only child , growing up I was always called a Princess and I used to hate it, I hated it I wanted to be known as a Prince instead because that felt way more true to my identity as a non-binary person. A young binary person and I really didn’t understand what it meant to question my gender identity but as I’m coming into my understanding of who I am especially as a disabled non-binary person I realize that you know I got to celebrate the parts of who I am and celebrating the parts of who I am that means naming myself as a Prince.
[TR in conversation with Bri M.:]
Ok, I like it! It’s all about being your authentic self. When you have that that’s like a sense of freedom. And when you can show it and just hold your head up nobody can take that down so shout out to you for that!

Bri M.

Thank you, thank you Thomas.

[TR in conversation with Bri M.:]
I’m going to blame it on my screen reader so you correct me… the pronouns… Ze Zer Z …

Bri M.
Ok, so let’s break it down

[TR in conversation with Bri M.:]
Yeh!

Bri M.

So you know she, her, hers, herself right? What I want to do with my pronouns is to say Ze as in she. zer (pronounced zear) as in her, zers (pronounced zears) as in hers and zerself (pronounced zearself) as in herself.

So when people see me they automatically assume that I am a woman because I present in some ways as a woman just for safety reasons.
[TR in conversation with Bri M.:]
Mm!

Bri M.

In my chosen family people refer to me as Ze Zer because they know those are my pronouns. Those are really important to me because again they highlight the fact that I want to be set apart from society because you know I want to reclaim the fact that I live on the margins. Being known as Ze Zer is also part of feeling like the Alien Prince that I am

TR:

Bri’s identities intersect with so many marginalized groups. And then 5 years ago ze added disability to the mix.

Bri M.

I have Multiple Sclerosis. I wake up in the morning and never know what might happen to my body or how much pain I might be in . I walk with a cane so I’m visibly physically disabled. So my relationship to disability is that it’s very much in the forefront of my mind all of the time . I’m constantly having to engage with unsafe spaces because I don’t feel like I can move in the same way other people can but at the same time coming into my own understanding of disability justice has been really freeing because I’ve come into a whole new community of really accepting wonderful brilliant people. Brilliant disabled people of color, brilliant white disabled people and it just feels really good to know that I’m not alone and that at the same time people consider me to be unique and vital to the different conversations that we’re having around access and around what it means to be an ally.

[TR in conversation with Bri M.:]

What were you doing before you were diagnosed with MS?

Bri M.

Oh wow!

Well I was actually working in the music industry and I don’t know if you know anything about like working in that industry but it’s very much like very able bodies. you have to be on like 110 percent all the time. You have to be there you have to show up you have to make connections with people and often times these were connections I was making with white straight Cisgendered people who didn’t understand who I was as like a Black non-binary person and it was hard but I loved doing the work that I was doing. I remember I was doing grunt work for this one venue called the Music Hall of Williamsburg – it’s pretty famous . It’s been a while for a long time. I was one of those people who would shop for a band and set up the green room and you know if you know anything about that it’s very active work. I was also facilitating a lot of workshops around social justice and racial justice.

[TR in conversation with Bri M.:]
Ok, so you were already there doing the justice work That was already a part of who you were.

Bri M.

Yeh! I did quite a bit of that in college. I did a lot of radio. At one point I had three radio shows in college. It was really good for me. Getting through college was really difficult.

[TR in conversation with Bri M.:]

What college and tell me about the radio show?

Bri M.

I actually went to three colleges …

[TR in conversation with Bri M.:]
Same here

Bri M.

I started at Colgate University…and then I transferred because it was so hard to be a Black Queer person up there.. so difficult. People were like actually throwing slurs at me when I would walk around on campus. Honestly the stress of it all of being there… I remember feeling these weird symptoms on the left side of my face like a permanent tick on the left side of my face I remember feeling that and looking back on it now I think that’s when my symptoms of MS started.

[TR in conversation with Bri M.:]
Wow!

Bri M.

Then I transferred to the University of San Francisco. I did a lot of thesis work there because there’s a big body modification movement out there. And then it got to be way too expensive Thomas, so I came back to New York and finished my degree in Sociology at the City College of New York. City! What, what!

[TR in conversation with Bri M.:]

I’m Baruch… throw it up!

You did a radio show where…at all three?

Bri M.

All three but mostly at Colgate.

it was pretty much straight music. I was a bigger metal head when I was in like in my 20’s but I’m still very much a metal head now.

There was one show that I did that was “World Music” I don’t know what that means but a lot of Reggae and another one I did with Metal pretty much all Metal music, Hard rock. My third one was a mash up of Hip Hop, Pop and R&B.

It’s just funny, I’m thinking back on all of the things I’ve done so far before I became disabled and decided to do this podcast , it’s funny how they all link together.

[TR in conversation with Bri M.:]
Exactly.

Bri M.

I was already doing radio, I was already interviewing people like yo it just makes sense!

TR:

Looking back allows us to view our experiences as preparation. Individual events that are in no way related come together to make something new.

In Bri’s case, the result is Power Not Pity.

Bri M.

I’d say for like a year in a half I was pretty much bed bound and didn’t leave my apartment very much . Listening to a lot of podcasts. Listening to these voices of white Cis hetero people who just weren’t on my wave length.

I decided I don’t see anything for disabled people of color out here . We exist and we’re fully human beings and we deserve to be heard and seen as human, full unique genuine authentic human beings and I didn’t see that so I was like yo I’m going to make it.

TR:

Bri started by taking a course at BRIC or what was originally an acronym for Brooklyn Information & Culture. In addition to presenting free cultural programming they present and incubate work by artists
and media-makers who reflect the diversity that is Brooklyn New York.

Audio: Where Brooklyn At, Notorious B.I.G

Bri M.

They advocate for doing media studies for the people.

I took an intro to podcasting course there and then from there I just started to edit episodes , started to interview people. I just tried to immerse myself in podcasting and the podcasting world and disability justice that world too. Trying to put the world together along with all of my other identities. I started there and something that really validated me was actually being a part of this cohort that I just finished, this certificate program from Made in New York Media Center. They’re out of the Mayor’s Office of Media and entertainment. So whenever you see a film that’s been made in New York it’s got a little Made in NEw York patch attached to it and whenever you see media that’s been created in New York the Mayor[‘s Office on Media and Entertainment usually is behind that as well.

So this podcast certificate program was like a really big deal for me. When I got accepted I was just so happy about it because I felt like I’m on a different level now and I feel so much more confident in my skills as an editor and as a producer and I just want to keep going.

TR:

That movement is essential.

Like any creative project, it’s going to continue to change over time. In addition to the college radio and interviewing experience, Bri is in some ways ahead of the game.

Not only does Bri have a natural cool relaxed voice that kind of draws you in and makes you comfortable, but there’s also a good understanding of the target audience.

Bri M.

I’m talking to all those people who feel like they have never been seen in mass media in major society. I’m talking to all of those disabled people of color specifically for us by us. I want you to know that I’m here and I’m saying that I see you and that I want your voice to be heard and uplifted because it matters

In highlighting our voice and me saying that I want to uplift disabled people of color it’s like something that doesn’t happen often enough. That’s my audience.

# Compare

TR:

Disability impacts every aspects of society. Some experiences are common across different demographics.

[TR in conversation with Bri M.:]

I know a lot of my audience are basically people experiencing Blindness and vision loss to whatever degree , but I think there are so many similarities …

What are some of the access issues that you experience on a daily?

Bri M.
Mm, mm… Well living in New York City, it’s the most inaccessible city, I think.

[TR in conversation with Bri M.:]

See that’s so funny… that’s from your perspective, but from other people’s perspective it’s like New York is accessible. It always bugs me out…

Bri M.

What? … Are those Able bodies people saying that?

[TR in conversation with Bri M.:]
If a person is Blind or visually impaired, having that access in a city compared to where I live… I live in the Poconos so I don’t have access to jack! There’s nothing ok! But in the city you know if you don’t have an issue where you need to climb steps , then it’s not going to be a thing for you but most of the train stations aren’t wheel chair accessible or they only have steps It’s such an incredible difference how within the same community people view that differently.

tell me about it from your perspective.

Bri M.

Everybody has different access needs… for me personally the things that are difficult for me have to do with my physical needs right. I don’t want to say I’m the access notes police because I am not trying to align myself with the police but I’m constantly finding myself as a person to say ok where are the access notes where is the information about the accessibility of the building at so and so event.

[TR in conversation with Bri M.:]
What about in terms of interacting with society, because your disability is visual right, meaning people can see that you have a disability you are disabled. That is similar to blindness because they recognize that off the jump. How do people respond to you.

Bri M.

I live in Brooklyn and everybody’s like super rushing around really fast and so they look at me , they perceive me as a young person but they don’t look down and see that I’m using a cane. They just gloss over me and so a lot of people don’t even realize that I use a cane until I’m in their immediate space and so I think I throw a lot of people off just by being . There’s a saying out there in the disability justice world to exist is to resist. I really do feel like when I’m in able bodied spaces like yo I’m the only black physically disabled Queer person non binary person there. I know I already stick out like a sore thumb but the cane makes me stick out even more and people … because I walk slowly to people just pass me by and treat me like an obstacle.

I’m a person too and I’m valid.

I really truly believe that if we had disability justice in our high schools and our middle schools things would be so different. This world would be so much less ablest. This world would be a more just place because people would know like you don’t pass someone with a cane .. don’t pass them on the right side, their cane hand side because that destabilizes them. That’s just a little thing that people don’t even realize you know. The way I move is different from you but that doesn’t necessarily mean it’s wrong or it’s bad.

[TR in conversation with Bri M.:]
What about the actual face to face conversation interaction? Are there any differences there?

Bri M.

Well yeh I’ve definitely noticed differences over time. People will say oh well you look good now maybe you don’t need to use that cane anymore. How long are you going to use that cane for… I have people who I live with in my building , my neighbors , you know I say hello because we’re all out here living and struggling to survive so I say hello because I want to say yo I see you and I want you to know I’m your neighbor too but my neighbors will be hella rude and say like yo when are you going to stop using that cane? I get a lot of that and I think it’s because I’m young, I’m about to turn 30 and disabled and people expect me to be on all the time when that’s just not my lif eThomas.For half the time I’m out here living I’m in bed. I’m working from bed so a lot of the conversations I have are just not nuanced. Their very ignorant and I constantly feel like I have to educate people which is so tiring, but I do it anyway because I think it matters so much to me. I want people to know that there are other ways of viewing disabled people of color. There are other ways to regard us besides thinking that we’re something to be pitied. That’s why I name the show Power not Pity.

TR:

While people from different walks of life and different disabilities have common experiences; others can be quite unique.

Bri M.

I decided to create this thing because I wanted d to find more community around me because that’s so desperately what I wanted so

I made the show Power not Pity and decided to focus on disabled people of color because we are the ones who are most marginalized. We deserve to be seen first and heard first because we are the ones who are brutalized by the police. Half of all cases of police brutality are enacted on black disabled people.
Audio: Multiple news clips about police brutality cases against Black people with disabilities. ends with the actual recording of police realizing a driver was Deaf after they pulled him out of the car…

Bri M.

It’s not a game. It’s not something to just be swept under the table. We need to talk about this, get conversations going around why black disabled people are dying out here and nobody’s talking about it.

TR:

Well Power Not Pity is now a space for such conversations and more.

Bri M.

I love storytelling. I love listening to stories. From a very early age I was a book worm. I always enjoy the art of getting to know someone through an interview and I think one thing that I really do love about podcasting is it still feels very much like DIY. A lot of people say that right now is the wild , wild west of media and content creation because there’s a lot of possibility in podcasting.

I think people are starting to realize that there are voices out there that are underrepresented that need to be heard, that need to be expressed fully because podcasting is so homogenous, so white so Cisgendered , so hetero and so male oriented. I counter act that just by being there. I counteract the idea that podcasting is only this one way. Podcasting is a myriad of things. If you have a mic and you have the desire then you got it you can go. It’s one of the more accessible ways of reaching people and connecting on a deeper level.

[TR in conversation with Bri M.:]
I look at the podcast hing and anything, life is about finding your lane. Finding that lane where you fit in and kind of riding there and if you want to venture out go into another lane ok, you can do that but you always got somewhere to come back to where you got your people and all that . So what do you think is your podcast lane?

Bri M.

Mm my podcast lane! You know what being a non binary person I just feel like I don’t want to be in any lane . I want to float above the lane because that’s how I feel is my state of existence is just floating behind everything because I want to be able to see how things are constructed.
Everything we do in life, it’s all made up it’s all built upon all of these different made up notions of being. That’s the way society works . Ok so maybe I’m trying to drop some truth on you right now…

[TR in conversation with Bri M.:]
Drop it, drop it!

Bri M.

None of it is real.

[TR in conversation with Bri M.:]
Explain that

Bri M.

For example, the idea that you as a person, body hair is something that’s really interesting about society and how things are made up because like say you have short hair. I’ve been mistaken for men in the past because my hair is short. You know it’s like why do we assign short hair to maleness and why do we assign longer hair to femaleness because it’s just hair. At the end of the day … laughs…
Other societies don’t function in that way. That’s what I mean when I say it’s all made up right. We create these systems that are now enacting violence and oppression us. One thing I want to do with the podcast is highlight that. Highlight the fact that we are in a serious time right now. We are in some serious dire straits and things need to change and part of that change is putting yourself out there and saying hey no you’re not going to silence me I know that these systems are here to silence me and to put me into institutions of oppression and I just want to make it more known for people understand and come away with the idea that yo things can change and I can do something to change this just by rearranging my actions and rearranging my thoughts around what disability looks like and what it means or feels like.

[TR in conversation with Bri M.:]
No doubt, droppin’ it! I already know what the title of this episode is because it’s hot… “Floating Above the Lanes with Bry! That’s so hot! Laughs…

Bri M.

Laughs… Yes! I love it!

TR:

Floating, but not aimlessly.

Power Not Pity is about representation.

Bri M.
The ways we move in society , the ways we adapt to things like the different ways we connect to each other that we try to cultivate access with each other is revolutionary because society tells us that no it’s about you. You have to be the one to pull yourself up by your boot straps . It’s all about the individual and the ways that the individual can overcome their hardship…and rise up as assimilated person in society. When it’s really not that way. Realistically no one can live that way . I think disabled people of color know that we don’t do it alone we move together. We are all valid.

[TR in conversation with Bri M.:]

What do you like to do when you’re not fighting ableism?

Bri M.

Oh my gosh! When am I not fighting ableism?

Honestly, part of the editing process is sometimes how I unwind actually. That helps me feel less stressed to. When I get into that mode , that editing mode . I don’t know if that makes me like a really big podcasting nerd?

[TR in conversation with Bri M.:]
Oh absolutely!

TR:

And podcast nerds is where it’s at baby!

Big shout out to Bri M!

And I know what you’re asking yourself right now…

Where can we find Power Not Pity…

[TR in conversation with Bri M.:]
And where can we find Bri M?

Bri M.
Laughing…

Ok, well you can find Power Not Pity everywhere you find social media. I’m on Facebook at Power Not Pity, I’m on Twitter and Instagram @PowerNotPity.

You can go to my website PowerNotPity.com. All the episodes are there, the transcripts are there. I’m on Linked In if you want to look me up professionally.

[TR in conversation with Bri M.:]
Thank you so much Bri, that was really really dope!

Bri M.

You’re welcome. Thank you Thomas this was great!

[TR in conversation with Bri M.:]
Cool I appreciate it!

Audio: Uptown

# Close

TR:

I hope you too appreciate this conversation.

how you lived your life prior to disability will impact how you live your life after disability. If you were motivated and driven, open to new experiences then chances are you’ll continue that way. If you were closed minded and stuck in your ways well you’ll probably be the same way with a disability.

Becoming disabled as an adult can impact a person’s career path. It doesn’t have to. But it’s also an opportunity to take reassess and make use of other skills and interests.

If you’re fortunate, the result could be at the least a new career and at most a mission.

Now, if you choose to accept, I have a mission for you.

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!

TR:

And in case I forgot to mention where I’m from…

Uptown baby, for the crown baby, we get down baby!

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
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!

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