Reid My Mind

TR:

Greetings Reid My Mind Radio Family!
Today, I’m bringing you a bonus episode.
As I mentioned in the first episode of the Flipping the Script series,
What We See, I’m sharing slightly edited versions of the full conversations I had with
the three guests; Carmen Papalia, Collin van Uchelen and Andrew Slater.

First up, Carmen Papalia.

Before we get into this conversation, I want to note
I’ve heard from a few that you enjoyed the conversation around hallucinations for various reasons.
I’d love to hear from more of you so as a reminder,
you can always reach out to me via ReidMyMindRadio at gmail.com.
One of the best ways to support this podcast is to tell a friend, a stranger or even an enemy.
I bet if you share the podcast with an enemy, they will immediately be eternally grateful to you and no longer an enemy but rather a dedicated friend for life.

That may or may not be the case, but you should still tell as many people as you can to check out the podcast.

Remember it’s available everywhere you find podcasts

The trick is spelling it properly…
say it with me….
R to the E I D!
— Sample: “D, and that’s me in the place to be”, Slick Rick

TR:
Like my last name. But first, you know how we do!
— Reid My Mind Radio Theme Music

Carmen:
My name is Carmen Papalia. I’m a non visual social practice artist with chronic and episodic pain. I am calling in from the stolen land of the Musqueam, Squamish and Tsleil-Waututh people, where I was born and live as an uninvited guest. I’m on land that’s colonially known as East Vancouver. I’m white with an olive complexion, I have black hair, I have a beard. Today I’m wearing a green will cap, a pullover sweatshirt that’s gray with I think green white LED ring that says MIT on it. I was just at MIT, giving a talk as part of a conference called altered access through the list Center at MIT.

TR in Conversation with Carmen:
Can you give me a little bit of description of your at of your work in general,

Carmen:
I started making work maybe in 2009. And that was even before I thought of myself as an artist, what I was doing, then I think I’m still doing now. It was at that time performances that I was doing to better understand my own position as a disabled person. I started just doing these, what I called experiments at the time, when I started using a white cane and when I started describing myself as disabled, to better understand how those terms and how the white cane positioned me also like what that meant in terms of my position in my community and how that changed. Now I make socially engaged artwork that addresses my own access, and then also how people who are disabled have agency and decision making power in the context of institutions. I do a lot of fun sort of performance work, where some of which I’m like, replacing my cane with different things and then trying to navigate a public space, usually an unfamiliar place. So one of my performances is called mobility device, and I replaced my cane with a marching band that I use to navigate the city. I also have replaced my cane with a megaphone in the past, instead of using the cane, use the megaphone to identify myself hail support from passers by. More recently, I’ve been like doing large scale installation work and curating. I just had a show at the Vancouver art gallery that I curated with a bunch of guest artists. I made this like large scale like 20 foot tall installation, that was a gathering place for folks in the disability community. That piece in particular was meant as a space where people could sit with material from the disability filibuster against Bill C seven, which was the medical assistance and dying act and Canada that was passed in 2021. That’s sort of an organization that I co founded with a friend Mia Susan Amir, who’s a Vancouver based theatre producer. This organization addresses leadership in the arts for folks in the disability community, with a priority on the access and opportunity for ultimately marginalized and BIPOC folks within the disability community.

TR in Conversation with Carmen:
You sound like you were still struggling saying that you’re an artist. What were you doing before 2009?

Carmen:
(Laughs)
Well, I so I got my English degree. Before that. And yeah, I guess I saw I only started studying, like art that like the kind of art that I’m making. Now, in grad school. When I, I went to Portland, I moved to Portland, Oregon, and went to Portland State University for grad school and studied art and social practice. Before that, I was studying English and Vancouver, and poetry. And before that, I was an animator. I was like an illustrator, and did like character design. This was when I had more vision. So straight out of high school, I took like two years of animation. And that was my path to become like a character animator, or do set designer character design for animation.

TR in Conversation with Carmen:
So you were an artist then? Did you feel you were an artist at that point? (Laughing)

Carmen:
(Laughs) I don’t know. I probably said I was an artist back then. I was more into the craft of illustrating, that’s something I don’t do as much now. It’s a different artistic practice that I do miss, I guess. Like I really started claiming it and saying like, I’m an artist when my career became viable. And I was like, oh, okay, the floor is not going to collapse beneath me. I can maybe make rent make my you know, pay my bills doing this.

TR in Conversation with Carmen:
Yeah. I kind of latched on to that when I heard it, because I don’t think I’m an artist, but I’ve been struggling over the last whatever years and just kind of referring to myself as a creative person. So to hear you say that it’s like wow. It sounds like you’ve been doing art for a big portion of your life. I’m real curious about how you would go into the performance. Like that was your initial thing. What made you say? I’ll try this?

Carmen:
I think it was specifically because when I started using a cane, the people in my life told me like, oh, there’s a lot of people looking at you and looking at us now, because you have this lightning rod, you’re carrying lightning rod for attention, and not that I’ve ever been struck by lightning and holding a cane. First, I was very uncomfortable that a lot of people were looking at me. But eventually I just started to think of them as like an audience. I just was like, Okay, if people are already looking at me, what is the message that I want to send them? Maybe at that point, I was just wearing snarky T shirts, sending messages that way. I eventually I started modifying my cane. My first modification was I was using a rolling ball tip on my cane. I mean, it’s smaller than a ball for billiards. I had my girlfriend at the time, paint an eyeball on it, cover it with resin. I would just like kind of drag this I started modifying the cane because I wasn’t comfortable using the standard issue cane because I felt like it was attached to the institution that I got it from where I wasn’t quite aligned politically with the institution that I was seeking service as I eventually made a 15 foot cane just to talk about how I felt like the cane was like a cumbersome symbol. Around the time I started using a cane. A lot of people would just like mistake it for 100 different things, or hiking stick or pool cue tripod wept in of some kind of

TR in Conversation with Carmen:
golf clubs, I got that one before.

You had sort of the guts, kind of to go forward with the performance…When I first became blind, and I was told that everybody staring us might be out my family. I had decided, yes, well shoot, why don’t we get sponsorship? Maybe I can where we can wrap our car in something. I said we all wear some sort of clothing saying sponsored by

Carmen:
when I started using a cane there’s this like skateboard company that was really popular called Blind. And I remember wearing their T shirts. Because the Grim Reaper with the word blind on it. That’s a good idea. Like yeah, sponsorship, I think there’s probably an opportunity there.

TR in Conversation with Carmen:
Talk to me about your idea of working non visually, you’re specific about what non visual means.

Carmen:
I don’t call myself blind. I don’t use that word to describe myself. I think it’s because of a very specific reason. Maybe I blame this on being a creative writing student. I was writing about my new access to the world. I just looked for synonyms for the word blind and just to like, you know, kind of unpack this term. And all of the words that came up refer to this lack of awareness, limited understanding, ignorant in perceptive, senseless, I made this like simile list poem. I just thought like, culturally, this word means uninformed. Seeing is believing like, we’ll no it when we see it. This association between knowing and seeing, it really is something that has been embedded in culture for centuries, I really wanted to subvert that a bit and just explain to people that no, I’m someone who uses their non visual senses. I’m someone who has prioritize the access that I have through my non visual senses in my life and relationships. And that’s what’s meaningful to me. If we didn’t live in a visual culture, I wouldn’t have to use that term non visual, I think anybody really should just be accepted for the way they learn whatever the orientation of their body or senses or whatever their behavior is, I guess it was at a time where I was trying to like, trouble like common perceptions around blindness. Blindness is often equated to like complete darkness. To, which is not the case. I have, I would say like an extra visual experience as someone who’s non visual. What I’m talking about right now is my visual hallucinations, something that I don’t often share about but I think a lot of other friends who are blind or low vision and visually impaired, like really can relate to as well. We don’t see pitch blackness, many of us what we see is very bright and like stimulating and I would say like, for me beautiful and spectacular.

TR in Conversation with Carmen:
I want to talk about that. But I got to ask you a question. The way you describe the word blind. I’ve heard folks talk about disability in the same way. But you use disabled?

Carmen:
I do.

TR in Conversation with Carmen:
Is there a difference?

Carmen:
Yeah. Okay, so for me, the word disabled is like I use it because I’m signaling my politics. I kind of get behind this idea that disability is socially constructed. The things that are barriers for me are social, cultural and political conditions, their cultural bias, discrimination, the fact that it’s harder for people like me to find meaningful, accessible employment, the fact that people like me have a hard time finding medical care that works for them. These are the things that are barriers, the condition of my body is a fact I can’t change the condition of my body. I also have like two degenerative conditions. So I really can’t change the condition of my body, it will continue to change. But what I can do is live in a community where the kind of care that I need is understood,

TR in Conversation with Carmen:
You’ve probably met a lot of folks who don’t use the word blind, but it’s really about them sort of running away from blindness. Yeah, you didn’t do that you took on a non visual way, you really leaning into that whole non visual, yeah,

Carmen:
I don’t think that I lost my sight either. Something opened up for me, when I started putting value in the non visual, my world opened up. That’s what I’m continuing to explore in my work in my writing and through the various relationships that I have with other people who want to be part of that world to some of those people are blind and low vision. But some aren’t. I do this project of performance where I and I’ve been doing this since 2010. It’s my first like, exhibited artwork. It’s a walking tour, where I take groups, my largest group has been 90 participants, they all line up behind me link arms and shut their eyes, and I take them on an hour long walk through a city on a route that I’ve mapped, and that I’m familiar with. The whole point of the walk is to exercise our non visual senses, something that we don’t dedicate time or intention to, I don’t really think of it as like, Oh, this is simulating my experience of blindness can show people how it feels to live in a visual culture as someone who’s non visual just by asking them to shut their eyes for an hour. But really, I can invite them into non visual space practice using their non visual senses. That walking tour is really about the support network that coalesces when, like a group of people come together around the same activity, the ways that we care for each other when we need to, you can imagine this group of 50 people inching across a busy street in New York, and

TR in Conversation with Carmen:
holding up traffic.

Carmen:
And sometimes we do get people honking at us because it’s as much about the ways we navigate that it is how we manage navigating public space with their eyes closed.

TR in Conversation with Carmen:
With this podcast, I’m always thinking about those who are new to blindness, new to disability, I know that somebody new is like, I don’t know about all of that. I don’t know if I can, you know, escape the visual world? And out of that. Is there an example of something that someone could sort of try on their own to even test the non visual way? Something that would give them a little bit of joy?

Carmen:
Yeah, yeah, the thing that I did was learn to be an active listener. So I was an undergrad student at the time. And I took this course in acoustic communications. And a lot of our assignments were about just going into public spaces and listening for a period of time and writing a sound journal about what we heard every sound event and quality of sound that we heard. And you can just learn that through practice. And this is how that whole field of study emerged to it was really about like a group of researchers that were going out to document the soundscape. And I mean, that word didn’t exist. Or it was soundscape came out of this whole research. But really, it was just going outside and listening and continuing that practice. I think you learn a lot about what is there just because you’re focusing and making space for it. And that’s how I really started to love this new perspective, say, finding places in the city that I liked being in because I liked the way they sounded. And that’s just one example. I think you can do things with your tactile sense to some of the times that I feel like I love being me the most is when I’m in my neighborhood, maybe beautiful kind of warm summer evening and I’m using my cane. Usually when I want to be in my body, I shut my eyes when I’m walking, just being able to explore our surroundings for me just through what I can hear and feel. I feel very free, I think it’s because I’ve made the choice to value that space. That’s the space that I want to know better. And I can do that in these ways. And I’m

TR in Conversation with Carmen:
going to assume you don’t compare in your head, in your mind, one experience to the visual experience.

Carmen:
No, not really. I receive a lot of description of art in my job. So like as an artist, and I think I have like a really great situation that I’ve set up for myself where like, usually when I’m going to art gallery, and artists or curators describing things for me, which is nice, or like a describer, someone that I enjoy their approach. It’s usually pretty good description that I’m getting, but I don’t equate it. I don’t know, it’s complicated for me, because I think in some ways, the description is the artwork. But it’s also an entry point to it. It creates something, some relationship flexibility, where I can understand these words, as the thing itself, we really are just interpreting through our physical senses, usually, anyways, we’re subjective. If you’re inspecting something visually, you’re interpreting that and then reporting to whoever about it. That’s the same thing that’s happening when someone’s describing what they’re seeing to me. And, and I’m, I’m adopting it as a version of truth. It’s hard to explain, but I do think there’s some magic in describing something. There’s been times where people have described artworks to me and sent me like a description email. I’m like, I feel like I received an artwork. Oh, wow. Like we didn’t even have to like steal this from the collection. If I can send it to someone else now.

TR in Conversation with Carmen:
Description is the art. That’s it right there.

Carmen:
Totally.

TR in Conversation with Carmen:
Let’s get into what you call your apparitions. hallucinations. Could you describe them first for me? Give me an example of what you see.

Carmen:
What I’m seeing right now are… they’re sparkly, or twinkly, it’s like water, they’re vibrant. They’re colors like blue, and purple, and green with highlights of orange and yellow, and red. Sometimes there’s objects, there’s different layers to so like I just described the layer that’s occupies my entire visual field. But there’s also these visual events that happen to on a different layer. Some of those have been happening to I’m describing, they take shape, like distinct shapes, usually. And some of them are like what I call a backward see, it kind of swirls around to my visual field. Sometimes it’ll patrol I guess. I’ve been writing descriptions of the various hallucinations that I see the see one, one of the ways that I’ve described it and the way it moves is as a patrolling manta ray, it kind of just like swims across my visual field, and then goes back and forth, and back and forth. And then sometimes I see this one hallucination, maybe like three times a day. And it’s a spiral it just like spins, maybe for like, I don’t know, five seconds, and then it kind of like just flies away. I have so many different kinds of hallucinations, though. And like I’m always seeing them. And they have gotten more amplified over time. When I was young, they weren’t as vibrant or prominent in my visual field. I remember them just being this like fuzzy vibration that I noticed some times when I was looking at a wall. Now it’s just very engaging and animated. I’m at a loss for words, sometimes. There’s a lot of similes and metaphors. But there’s not enough words to describe what I’m seeing. And I do call them apparitions playful spirits, especially this spiral like this is this is like a guy that I like seeing a couple times a day. I enjoy them. I really do. Especially when I get to like talk to other people about them. And they’re like, oh, yeah, I see that too. And hey, did you notice this? And then I’m like, oh, yeah, I did. And then like you kind of develop your vocabulary. Develop your understanding of it. Yeah, I’m fascinated with it.

TR in Conversation with Carmen:
You mentioned objects. Were those what you described or is that something different?

Carmen:
Yeah, that’s one kind of hallucination that I experienced. That watery sparkliness is like one layer and then on top of that, are the objects that I’m calling. Yeah, yeah. So sometimes the quality of my vision right now, everything blends into everything else and unless it’s like high contrast, right now I’m looking at my window. It’s light out. I can tell that there’s a brightness and it’s kind of like a Big blobby shape, I can tell that there’s more brightness there than in the rest of the room. But the rest of the room like I know, my, my desk is in front of me, and there’s things on my desk. But it just everything is blending into everything else. The layer of hallucination is kind of a filter over, whatever I’m picking up in terms of light and shade perception.

TR in Conversation with Carmen:
Was that annoying in the beginning?

Carmen:
I feel like it started happening more and more when I had already realized or like accepted that I didn’t have functional vision. Like I didn’t have usable vision. I felt like I started using a cane before I needed it. But then, eventually, I was like, I can’t use my eyes anymore. My vision is unreliable. So how much should I rely on it? Yeah, like it was really a choice. I stopped using my contacts. And I was like, What’s the point of using contacts, I’m just getting the smallest fragments of vision. They’re not super usable. I don’t want to hang on to this. I was also having like headaches and migraines because of it. So I kind of just transitioned, it almost relates to my closing my eyes when I’m using my cane sometimes it’s like I just wanted to focus on the other information.

TR in Conversation with Carmen:
Were you sort of fearful of talking about these for, you know, how people would judge you ?

Carmen:
know, I mean, I think the first person I probably told was my family, because like the condition is hereditary. So my brother has the same condition. And he also sees these kinds of playful aberrations, or at least has some effects similar to what I have. We talked about it. And then I think it wasn’t until like I moved to Portland and went to grad school that I met another person with RP. She said that she enjoyed these hallucinations. And I was like, Oh, me, too. And then years and years later, I met Colin, who, we started working with each other. And I guess I didn’t even know like about the term Charles Bonnet syndrome. Colin was offering terms that he heard from other people. The first thing he told me was scintillating, Photopsia, and I was like, well, that’s a mouthful. I had to like practice it, because it was such a twister. Leading made sense to me. I’m like, Yeah, there’s definitely some scintillation happening here. And then we just started talking about it more and more. And I learned that he had his own words for what he was seeing. And then I met other people like Andy, who had his own words for what he was seeing. And some of the things we saw were the same. And that just like really was affirming and exciting. I was reading up about Charles Bonnet syndrome, the history of it, it being like something that grew out of like this psychiatrist documenting the hallucinations that his grandfather was having during vivid vision loss from a sighted perspective, and just through his grandfather, like describing them. And I was like, wow, I want to describe my own. Everyone that I know who has this condition has their own way of describing it. And I learned, you know, like what I call backward see, and he calls a Cheeto. And with hives, like, that makes a lot of sense. And, you know, I can not think of it as a Cheeto now, but I also think of it as a glow worm too, because that’s what Colin calls it. Yeah, it looks like all of those things. And it’s, it’s this impossible, kind of like color you might see at the center of a firework. I think I didn’t really know how to describe it before I started talking to Colin about in talking to Andy about it.

TR in Conversation with Carmen:
Usually when I read about Charles Bonnet, the images are pretty scary. Most people report that this scary, like they’re reported as little monster creatures.

Carmen:
I have had hallucinations that have taken the shape of people before and figures. I haven’t thought of them as scary because I don’t know. Like, I know what they are. I mean, I, I still feel like there’s something about like, the visual and imagination that is also activated when I’m having these two. So like, I’m still learning like, what, what affects this condition or these hallucinations? What makes them more vibrant? Does it happen when I’m more tired or? I mean, I know it definitely happens more when I have cannabis that really amplifies hallucinations, depending on what I’m using, like I want to learn the conventions of the kind that I experienced. I don’t know if it’s Charles Bonnet, I haven’t talked to my doctor about this. I feel like I’m really into like exploring this with other folks. That Hey, experience it.

TR in Conversation with Carmen:
I totally get that. And definitely no judgment on the doctor because my doctor told me it was soon after I had a surgery to remove the eye. Somewhat soon after that, I started noticing it and I was like, wow, what is what is this? And so I told him about it and he was the one who told me Oh, that’s, that’s Charles Bonnet Syndrome. And then I was reading on I was like, this doesn’t sound like what I have. Mine is like a bunch of shapes. Sometimes they’re connected. Sometimes they’re not or they’re connected in certain ways. Like Finley, Colin describes something like islands, I just say these random shapes, and they’re on top of a solid black. All these shapes and colors are sort of on top of that. You can’t necessarily see any depth. But you know, I say they’re on top of it, because that’s what it seems like to me. They’re constantly morphing. But I don’t have any movement with them. It’s more like a morphing. I do sit there sometimes just really kind of focusing on it. And then it’s changed. But you don’t see the movement in it. It’s kind of hard to describe, but it’s changed. You know, when they’ll do like in PowerPoint, they do like a wipe or a dissolve and then something else just appears and it’s almost like that, but it’s really fast dissolve, so you don’t see it happening. That’s kind of the best way I can describe that. Yes, it’s absolutely tied to how I feel. If I right now took like a little quick 20 minute nap. When I wake up from that 20 minute nap. Ah, it’s so beautiful because it’s so vivid. Really? Yeah. Because the black. The black in the background is like just vivid black, it’s beautiful. And then all of these colors are just so. So vivid, goes from the haziness. And then it just boom, it’s just bright. And it’s just it’s just really nice, you know, but again, no movement. Yes, it is the cannabis can help get some movement because I experienced I was like, Okay, I’m gonna try some edibles. The edibles would bring out these sort of really bright, almost flashing, maybe a couple of pixels because it’s very it can be very pixelated what I’m seeing to this, this, I can see the pixels right? There will be like these little lights and then they’ll film the flash and then the flash. I’m like, oh shit, they’re flashing like, this is really cool. Like, I enjoy that, that. And then the other thing that I know if I’m tired, I’ll start and focusing on green. Even if green is nowhere near I’ll do that. Oh, wait, there’s the green. And so like in my house, if we’re sitting down watching the TV, my girls would say Daddy, do you see any green? Because they know that when I see green, I’m going to sleep. That’s really, so yeah, that’s like a little bit of mine. But do you focus in on? Like, sometimes I try to. I think it’s called like the Rorschach inkblot thing. Oh, yeah. Do you try to find sort of what you’re seeing in these do you sort of project like, what am I seeing in this? What is this?

Carmen:
I don’t try to interpret it necessarily like, oh, is this an omen thing or but I do really enjoy seeing it move. And so for me like it’s, I’ve described it before like an animated oil painting from space. It definitely has like an underwater quality to it to bioluminescent oil in water, maybe with some food coloring in it or something like that. It’s quite animated and dynamic for me. With cannabis though there are different varieties of cannabis that make my hallucinations take on different things. I guess this is something I’m trying to explore with my brother right now who grows cannabis for me. I also have pretty severe pain condition. I grew up spending a lot of time in hospital. It’s a pretty painful condition. It’s degenerative as well with bone pain. But what has worked for me, especially as a replacement for narcotics has been cannabis, as well as some other medications. Right now. That’s one of my main medicines is cannabis and especially what my brother is able to grow for me as my caregiver grower. This is a volunteer role through Health Canada, where we register for a growing license. He produces a certain amount for me and we make concentrates out of it and various products that I use. While it helps me with my pain. It also like engages me with my hallucinations. He’s developing a breeding program for cannabis. So we might land on and develop a staple variety that the whole point would be to activate my hallucination. Last summer we had this outdoor organic grown we grew this variety called LSD. I guess there are a handful of strains that are purported to have psych della effects are like extra psychedelic effects. One of those has the name LSD. It’s from Barney’s farm in the Netherlands. So we got some seeds, we grew some plants, it also happens to be a good strain for pain. It’s a pretty heavy hitting strain, even just vaping it, I experience intense colors. My hallucinations take on very vibrant, colorful quality. And now we have this stock of flour that I’ve been making concentrates with. And so I’ll dose myself with coconut oil. And I kind of experiment on myself in terms of like what this does to my hallucinations. And I’ve had like some amazing effects. Like you’re seeing coming back from like a nap or from sleep, I see like kaleidoscopic, shifting patterns. It just really amazing. The plan is that me and my brother going to mash up two strains that are purported to be psychedelic, and then kind of from that develop our own strain once we highlight what is the trait that is really affecting here? Because you know, there are many, many strains that don’t have this effect on my hallucination. Certain ones do. And I just saw something that just one of those manta rays.

TR in Conversation with Carmen:
(Laughs)
Oh. If someone who does not have these, if they were to partake in that strand, are we saying that they would see these things?

Carmen:
I haven’t found anyone yet. I have given a bunch of the oil to people that I know. And only people who have this condition have said that it has an effect on them. I haven’t found someone who is sighted who’s experienced this. I do have like two people. Now, hopefully, there’s going to be more in the future that I can share with two people with the same eye condition, though. I haven’t been just like, you know, kind of putting the wide net out there and saying like, Hey, does anyone one want to try it?

TR in Conversation with Carmen:
I’m sure you’d get a lot of takers. Okay, I have my very, very, very nice scientific approach to this. And so I’ve been thinking about like, is this something internal trying to communicate with me? Am I suppose to gain some meaning, I see the relationship between me and things that are going on. Like I said, when I’m tired. Seasonally, what I see is different. As we get into the warm weather, the colors are different, the colors are fruity. And so my red is strawberry red, yellow orange is more of a mango. I don’t think I’m making it up.

Carmen:
No, I really love your associations to those colors. It’s frustrating, like when you ask like, Were you worried to tell anybody about this? I’m past that. I’m just like, I’m not making this up. This is my experience. I’m happy to learn more about it. And I think it’s lovely that seasonally, you are seeing these different qualities, and also just that they’re associated with the time of harvest for fruit. That’s really beautiful. I just wanted to like affirm you, because you’re like,

TR in Conversation with Carmen:
No, no, I appreciate. You know what it comes down to, when you’re in a gallery, someone gives you a description of something, you trust what they say, I feel like it’s hard for people to probably trust what I’m saying. Because they have no experience with it, they can’t verify it. A bigger thing about this is that with audio description, we as blind people trust what we’re told. And when blind people are trying to be involved in audio description and be involved in this field. I don’t feel we’re trusted. We’re always questioned trying to get in as a narrative, most definitely trying to get in as a writer. Now there has to be this approval. There’s this process now that folks are talking about sighted folks talking about in terms of certifying and making sure people quote unquote, meet a standard to be able to do this. I think about these things. And when I talk to people, I’m feeling that same thing. I’m not going to stop talking about it. If you don’t believe me, well, f*%! you.

Carmen:
F*%! certification. Yeah. What is this about where we’re not trusted in describing the things that we’re experiencing? I think it has to do with dominant cultures privileging of visual experience, and the fact that the non visual doesn’t hold much value. I don’t know why we think that vision isn’t subjective. I think it’s just as subjective as describing the sound of something. For example, we’re all going to make our own associations to what we’re seeing and what we’re hearing and feeling when I am in a position where I’m not being trusted. And I’m sharing In my truth that really triggers me. I mean, this comes from me having medical trauma and being in hospital and needing medicine, and maybe there’s an obstructive nurse or physician, so me not being trusted, when you’re really putting yourself out there in terms of what you’re experiencing or what you need. I just question that and why it’s happening. Still, ableism is embedded in our culture. I think that this space, what you’re experiencing what me Colin and Andy are experiencing as it’s a place that I want to spend more time in, I think it’s improved my life, just saying that I’m a non visual learner, and, and that I’m a non visual artist, and getting to spend time in the non visual and understand my world on those terms. If I didn’t have the ability to do that I would be really depressed. I don’t know what I do. And I have that through art. I have it through community and disability culture. I guess that’s what I wanted. When I heard you say, I don’t know if they believe me wanting to affirm you. Because like, there’s so many ways that we’re invalidated as disabled people, questioning the knowledge that we have, because of our unique perspective or point of view, or embodied, or sensory reality, questioning the validity of that. It took a long time for me to say that I love being in this body. I just think that we need to tell each other that Yes. I want to know more about what you’re experiencing, from your point of view. And what does that mean? How does that change mine? Especially if you’re considering and in relation to dominant culture? Free me like this non visual position, it changes everything, but allows us to question why we value and privilege the visual as dominant culture does. That just really struck like a chord with me, I think it’s one of the most valuable things that we have is like what we can learn through our unique point of view.

TR in Conversation with Carmen:
You know, I told you that the doctor told me 19 years ago, it’ll probably go away in a month or two. (Laughing) almost 20 years later Doc!

Where in the beginning, I found it very distracting. It was really distracting for me. There are times when the predominant color is white, and it’s so bright, and it hurts, I have to really focus, I have to squeeze the muscle that remains and to try to get it to move. But now it’s… what would you say if you woke up and they were gone? If you didn’t have them anymore? What would your reaction be?

Carmen:
I’d have a sense of loss, probably I would be like where are my spirits where are my friends. It’s a new relationship that I have with my body. It’s something that I’m seeing all the time. It provides me comfort sometimes laying in bed in a dark room late at night, and I’m watching it, it’s dancing for me. It’s occupying my mind, and it’s engaging, and it goes really well with music. Oh, I think it would be sad if it was missing. That’s the other thing. Like when I had to see the ophthalmologist like throughout my life, it was always like, okay, in five years, there’s going to be a surgery, there’s going to be Q or something. Something’s every five years and then you kind of realized like when you’re a teenager that like, it’s not going to happen. I don’t want a relationship to my body or the world around me that doesn’t let me question what I get to question through what I have now.

TR in Conversation with Carmen:
Yeah. Tell me about the music. You just said it goes well with music.

Carmen:
One night I woke up maybe it was three in the morning or something. And I just I still had my headphones on. I guess like I had put Moog Music onto a synthesizer music on Spotify and randomly this album came on. I think it’s Dominique Dumont slept in sound artists, they made this soundtrack for a 1930 silent film, I woke up to this soundtrack. And it was very much a soundtrack for what I was seeing in terms of my hallucinations. It was beautiful. I can send us here but

TR in Conversation with Carmen:
yeah, please, please do.

TR:
Come on over to this episodes blog post on ReidMyMind.com and i’ll link you to the tracks available on Youtube.

TR in Conversation with Carmen:
The only connection is when I’m working with audio. That could be another time where things become clearer. There’s some clarity that happens and like I could be adjusting EQ and sometimes I start to say, Okay, I’m gonna go based on what I see. And so I’m adjusting. I’m like, Okay, this is this feels right now because this is, this is becoming clearer.

Carmen:
That’s great. Yeah, it’s

TR in Conversation with Carmen:
Wow. This is a lot of fun, because I’m telling you I tell I tell my family about it. My immediate family, my wife and my daughters, I don’t think I’ve ventured out and told anyone outside of my home about I mean, I mentioned that Oh, I got Charles Bonnet. I know I have. But that’s it. I don’t I don’t get to go into

Carmen:
another condition. Or other, right? Yeah, you tell family, the people closest to you? Because like they’re the most likely to you believe you and like and yeah. And yeah, I think I think that’s, I love how it’s functional for you in a certain way to even as a system for telling what time of year it is, I love that. It’s like your calendar, it serves a function within your audio production, it tells you when you’re tired. I think this is something that’s connected to disability art, and just disability experience in general. And a practice that like productively engages with disability, we are always in some way trying to make meaning of these experiences. Because what dominant culture is telling us is that there’s no value in that or you have to take this pill, procedure, etc. To get rid of that the people who want to explore what it means to live non visually or live as someone you know, even with pain, I actually think my pain experience is generative to like it allows me to make long term trusting relationships with people that are based in care. I share a lot with people, I open up a lot with folks. And because of it. Of course, there’s terrible parts to it too. But I think it gives me a lot. I think these hallucinations do as well.

TR in Conversation with Carmen:
That’s awesome. And helpful. I ask you about the weed in terms of other people like, Would you want other people to sort of be able to see what you say, is that sort of the end goal? Or is it just about inducing that and enhancing it for you and others who share this with you?

Carmen:
Yeah, that’s where it starts, for me and other people who experience it too. If it was only for me, it would be enough, but I want to share it with more people, I want to share it with other people who experience it, too. And I guess for visual people too. If I could create a new psychedelic, that I can share with people that can have the Inspire them or be beneficial in their lives, these hallucinations have a presence, they definitely make me feel less alone sometimes. And that’s an experience as someone with pain. And as someone who just has a sensory disability to that loneliness, it’s a very common experience within the disability community, because it’s hard for us to find each other literally. Sometimes, we’re separated in impairment groups, separated from dominant non disabled culture. I think if it helps people address that isolation in any way, it could be good to share with anybody, I want to like make art from it. And I want to start with people like you, Colin and Andy, see what these hallucinations can, how they can maybe encourage us towards new,

TR in Conversation with Carmen:
Say your work with the weed produces, where anyone will sort of experience what you experienced, what would you call your strand.

Carmen:
My brother and I this project that we have where we are developing this variety, it’s called impaired. We’ve been invited into a show in Zurich, this fall, where we’re developing an accessible grow room as part of the show, we have just been exploring different strain names for the this train, my brother actually came up with one that I think is hilarious, and I would love to use it. He said tripping hazard

TR in Conversation with Carmen:
(Laughing)

Carmen:
he’s also low vision. So like, perfect.

TR in Conversation with Carmen:
(Laughing ) Nice. Wait so accessible. grow room.

Carmen:
So because my brother’s low vision, like there’s certain systems that he set up for himself different ways that he does things that are accessible to him, and he’s applied some of those to the design of our grow room. And so we’re just going to, like kind of go further on, you know, with that, that concept and produce a grow room that’s functional, it may not have things growing in it. But it’s going to be sort of a replica of the one that my brother designed and, and kind of with maybe more features when it comes to accessibility features for its Folks who are low vision and folks who have pain as well, so, and a lot, a lot of what we do with impaired to is really about like, I guess like people having the agency to produce their own medicine and especially people who are disabled? Yeah.

TR in Conversation with Carmen:
Wow. That’s, that’s, that’s fantastic. Yeah, it’s funny because there’s these, again, with the connection of what this episode is about. It’s like, you know, blind people getting involved in description, you know, it’s also about or it could be about, you know, financial maintaining themselves, right. And that comes out of Blind people working with description, and what you’re doing right now comes out of you describing your hallucinations.

Carmen:
And I’ll just say, like, my brother is, is an engineer. He’s like a heavy civil engineer working on like, logic. He’s a project manager in that field. And, you know, he, he is he is a anomaly within his field. And, and I think I, you know, there’s, there’s a lot of blind, low vision and non visual artists out there, too. But I think, you know, even trying to find a space where, like, what, you know, what space am I going to occupy given that this is a visual tradition? Yeah, you know, I think, yeah, I think I think there’s something to what we’re doing with this impaired project that is a response to, to that, you know, and maybe even a question that my brother’s asking with regard to his own field. Yeah, yeah. Wow. That’s fantastic.

TR in Conversation with Carmen:
So, where can people kind of stay up to date with the with everything you do?

Carmen:
CarmenPapalia.com may be updated soon. You can send an email to info at impaired project.com. Our show in Zurich. It’s part of a show called inter dependencies. And it’s going to go up at the beginning of October. This year.

TR in Conversation with Carmen:
Carmen, this was fantastic. Yeah, I appreciate this man.

Carmen:
Totally. Thank you, Thomas. So fun talking to you. You’re awesome!

— Reid My Mind Radio Outro
Peace!

Hide the transcript

TR: 00:00
Greetings, family, and welcome back to the podcast. That’s right, I got candy in my mouth. Should I take it out? Or should I just do the whole podcast like this? (Mumbles unintelligibly… ) You know? I’m not recording am I?

— Tape rewinds
— Music begins: Snare hits increasing in volume into a smooth R&B instrumental…

Welcome back to the podcast featuring compelling people impacted by all degrees of blindness and disability in general. My name is Thomas Reid, I’m your host and producer. We’ve reached the last episode of the YGBD 2022 Season, you know, that’s Young, Gifted, Black, and Disabled. Some people ask me, Thomas, why Young Gifted Black and Disabled? My first reaction? Why not? Then I’m like, Nah, that’s not polite. Am I lying.

Now, if you just caught what I threw down and responded, either in your mind or out loud, “No, you’re quite right,” you and I share something that has nothing to do with blindness. However, that thing we share could also make our experience of blindness different from others. In this particular case, my reference was to an early rap song by Doug E Fresh called “The Show”. Just one of many Hip Hop references you will find in the history of this podcast. While Hip Hop isn’t necessarily an identity, one can make a good argument for being one. I personally will always identify as being hip hop. Black is definitely an identity. That intersection between Black and disabled has its own unique experiences that need to be discussed, even for the sole purpose of centering the experience of Black disabled people in the disability conversation. That’s of real value to me.

Then there are the additional levels of identity. Last year. We closed out YGBD discussing masculinity. We went places I didn’t know we were going, but I’m glad we did.

— Music stops

So this year… (repeats in an echo effect)

— DJ scratch
— Music begins: Snare hits increasing in volume into a smooth R&B track.
R&B crooner sings, “Ladies… Beautiful Ladies!”…
– “Ladies” Lee Field and the Expressions

— Reid My Mind Radio Theme Music

TR:

allow me to introduce you first to Boston based advocate, Heather Watkins…

Heather: 02:20
I self identify as a Black disabled woman, born with a form of Muscular Dystrophy, who didn’t always use mobility aids like I do now. I’ve been using them for the past 15 years including a cane and on occasion a manual wheelchair and also a ventilator to assist compromised respiratory muscles. I am a mother, blogger, author and I serve on a handful of disability related boards and projects including as a former chairperson for the Boston Mayor’s Commission, for Persons with Disabilities Advisory Board, the Disability Policy Consortium, the National Research Center for Parents with Disabilities and Open Door Arts. My pronouns are she her hers.

TR: 03:06
Also joining me today co host of the white stick Connect podcast from Philadelphia, PA, Lisa Bryant

Lisa: 03:12
I’m a Black female, dark skin with locs. And I’m currently a freelance journalist. And I’ve written for few local platforms but also looking to expand my reach, looking at some national opportunities. I was just recently appointed to the board of the Pennsylvania Assistive Technology Foundation

TR: 03:35
Two Black women with different disabilities, each bringing a unique experience of disability.

Lisa: 03:41
In terms of identifying my disability, I struggle with using the white cane but I’ve had to do that a little more of late. I went most of my life without having any difficulty. I was still driving. Then along came 2011 things took a turn and I had to stop driving and adjust to being legally blind.

— Music begins: A piano melody leads into a slow, dramatic groove.

TR: 03:59
If I asked you what does it mean to be a woman? Perhaps you have a list of things that come to mind. Maybe you even strike up with images that represent that. What does it mean to be a Black woman? What comes to mind now?

TR in conversation with Heather & Lisa:
I want to start here with what did you learn about being a Black woman as a child? What were the lessons that you were getting, whether they be from adults in your life, even from the media, like what was sort of the things that you were learning about being a Black woman, Heather you want to start it off?

Heather: 04:30
I grew up in the city of Boston, we lived in a section called Dorchester, which is one of the predominantly Black areas. Roxbury Dorchester Mattapan.

It was definitely a matriarch. My grandmother lived on the second floor. Aunties lived on the third floor. There was always family around. I was surrounded by strong women and bringing that up from the Greenwood Mississippi. All that wisdom sort of poured into me from my grandmother having grown up in the Jim Crow south. She laughed and joked, but she did not play. We didn’t have everything afforded to us. You kind of get inventive? I learned, if it’s not there, we’ll figure it out

TR: 05:11
pretty valuable skill, especially necessary as a disabled woman

Heather: 05:15
in terms of disability an being a Black disabled woman, Across the media landscape, I didn’t see that reflected back in ways that I found meaningful. Flip through beauty magazines, I didn’t see Black disabled women openly identified that way. That message was like, Where are we? Why is that hidden? What I didn’t see in the media I saw within my family.

TR in conversation with Heather & Lisa:
Lisa, same question.

Lisa: 05:41
My family images were very strong women. But I definitely remember as a very young girl, being more influenced by media and even classmates, when I was growing up, dark skin was not necessarily appreciated. We were teased about being dark. I didn’t like being teased. I was an only child, my imagination sometimes got very creative. I had an imaginary friend and she was exactly opposite of me. She was lighter skin, long, long hair. That was just what I did. And that was just how I imagined. I guess the way I sort of internalized that I just accepted that as No, that’s kind of the way it is. I don’t know that I remember even having meaningful conversations with my parents about that. I think I probably just kind of tuck that away. Later on. I thought, wow, how about that kind of self hate.

TR: 06:44
I really admire and appreciate Lisa for being so honest, and sharing that with us. It’s hard being vulnerable, that something only really strong people can do. That hate doesn’t start from inside us. It’s just another tool of white supremacy. A systematic approach to establishing power, by convincing Black people in others of color to feel inferior. It’s anti-Blackness at its finest.

Internalizing negative beliefs. That’s not just about race or color.

Lisa: 07:12
Fast forward to becoming legally blind, like Heather said, When did you see, on the cover of a magazine, someone very proudly, in a wheelchair, or proudly using a white cane?

I had absolutely no one else to relate to until becoming a member of the local NFB chapter. And even those that I did see some of the elderly people like in my church who vision was failing, I was so much younger, and I still had usable vision. So that was just a whole different world, the age I think, alone being like the big kind of barrier. So then it’s becoming a matter of, well, let’s see how we can fake this without making this announcement about my disability. It’s funny how much you just kind of internalize and live through things, and accepted as normal, even though it’s really not.

— Music ends.

TR: 08:13
Actually, I think these reactions are quite normal. I don’t think anyone wants to feel less than, unfortunately, what has been normalized is the idea that beauty is one thing. Disabled anything means inferior.

We can keep on with other things like age, gender…

TR in conversation with Heather & Lisa:
I’m wondering whether your experience with disability, how did it impact the definition of Black womanhood? Can you talk a little bit about that?

Heather: 08:38
Sure. I think it definitely evolved. So when we talked about disability, what back then we would say, quote unquote, handicapped, your handicap, but your healthy. So it was spoken about like that. The exposure that I got, regarding disability at that time was through MDA camps, Muscular Dystrophy Association camps, and like clinics. But still, I wasn’t seeing all the Black disabled kids. I saw maybe one during summer camps.

TR: 09:09
Every summer for about a week, Heather, as a child would stay at these camps for children with muscular dystrophy in the New England area, a chance to get away from the city environment.

Heather: 09:18
It was just like one, or maybe another person who was of color, or certainly only like one Black kid. And the messaging there too, was like, I have to go outside of my community to see other kids with visible disabilities. It was hard to really connect and have that kind of support system where you can connect with other kids in peers, who are disabled to talk about your life experience, but also to talk about frustrations because that’s important to getting tips and resources. Those weren’t things I discovered until much later in advocacy circles, so important in terms of building your own self awareness and even sharpening your advocacy skills.

TR:10:04
As a child Heather never really had the chance to form any sort of relationships with other Black disabled children.

This reminds me of the time in 2020 when clubhouse was new, and the 15 Percent Club was rockin. We hosted an event to discuss Black disability experiences. There had to be 30 people or more predominantly Black. Read my mind radio alum and CO producer of the first YGBD episode, AJ Murray famously remarked that it was his first time being in the presence of that many Black disabled people. There were several others who acknowledged it being their first time as well.

Lisa: 10:40
I had a similar experience when I went to a national convention. So this was 2019. I knew of other Black people in the Federation who were blind, but I had never been in the same circle with them. That was the first time and it was like, wow, I went a long time without really having anyone else who got me not just being female, not just being Black, but being visually impaired female or Black, or at least two of the three. It was a long, long, long, long time.

Heather: 11:15
What if we were exposed to cultural icons in grade school, who had disabilities? How that might have shaped and impacted our awareness? I’m talking about like Fannie Lou Hamer, and Harriet Tubman, Brad Lomax Sojourner Truth, all of them had disabilities, and it also impacted their life, how they govern their lives. Imagine learning that at such a young age or even being newly disabled, how that would shape your awareness and your concept of disability.
We get so many messages that downplay or erase disability because people generally assume that it’s synonymous with negativity. It has a much wider lens, it’s actually very comprehensive.

TR in Conversation with Heather & Lisa: 12:01
Heather’s describing what we mean when we talk about disability isn’t what you think it is.

Consider how disability is talked about. Often from the perspective of a diagnosis. It’s used as a metaphor, often to indicate negativity:

— Music begins, melodic, dramatic strings…
TR in a mimicking over dramatic voice
“, she was blind to what was going on around her.”
TR in a “Financial commentator” voice
“That will cripple the economy.”

Heather: 12:20
Who would I be, without having a disability and the evolutions and the twists and the turns and all of the folks that I’ve met in advocacy circles, especially diverse advocacy circles, who really has been a mirror for me, in validating that and raising that ceiling, where I was often capping my own potential.

So I often like to say I’m a woman in need of care, a caregiver and a community builder, all at once. But if you redact any part of that bio, then you reduce my community contribution, and visibility. It impacts every aspect of your lived experience in determining key quality of life areas. housing, health care, education, employment, how you live, how you shop, dine, socialize,

— Music fades out.
— Sounds of a woman walking down busy city street.

TR: 13:15
let’s get into these lived experiences, beginning with relationships.

Lisa: 13:19
I was walking down the street with my cane, and I just kind of had an image of myself. And I just had a thought, Well, I wonder what attention I don’t get now because of this cane.

TR in Conversation with Heather & Lisa: 13:33
So you walking down the street looking cute. You got the white cane? I don’t know what your status is dating, married, not sure of your status. But how has it affected that part of your life?

Lisa: 13:45
I have not been actively dating. So I’m not on any kind of dating website or anything like that. There’s certain places where I’m very familiar with my surroundings, and I may not have it right out. The sort of compliments or whatever I make it. I don’t think I had the cane.

TR in Conversation with Heather & Lisa: 14:05
So they try to holla when you don’t have the cane?

Lisa: 14:08
Yeah.

Sometimes I hear people say, well, blindness doesn’t define you. I know what they mean by that sentiment in terms of, they don’t want it to define you in a negative way. But at the end of the day, it is a part of you. It’s just as much a part of you as anything else about you your name your hair color. So let’s not sort of suppress that. There’s got to be a way to embrace it, put it out there, but in a way that just lets you know, people know like, this is who Lisa is, in fact, it’s an integral part of me because it does define my world. I navigate my world as a visually impaired Black woman. People probably see the ladder first.

Then there’s the cane.

TR: 14:49
The cane we know serves multiple purposes. First, an aid to orientation and mobility.

Lisa: 14:57
It’s just as much for me and my safety. but it’s also an identifier. It’s a way of saying to the world, you may think I see you, but I may not. Or I may only see you til you’re right up on me. I need to accept that it may sort of reduce some dating opportunities. But then, at the end of the day, are those really people I’d want to date anyway. Maybe one day, it’ll actually attract the right guy.

TR in Conversation with Heather & Lisa: 15:25
Heather, what do you think

Heather: 15:27
I was so ambivalent, for a while to use a cane 15 years ago, because I was thinking I was quote, unquote, giving in to my disability, it’s gonna make me appear weak and old. Then it dawned on me that this is a mobility a that is quite liberating. It’s helping me get from point A to point B, giving the nod that yeah, I’m in charge of my life here. I’m not sitting idly by, I’m actually moving and grooving. Those are the kinds of epiphanies and internal dialogue that I had to have, in rooting out that internalized ableism. So much of our gaze comes from a non disabled viewpoint. You’re not even conscious of it until you are and then you’re like, oh, wow, I’m comparing myself to all the non disabled peers and counterparts. And it’s just so self injurious.

TR: 16:23
It’s not only canes and adaptive equipment we use in public.

Heather: 16:27
I especially felt that when I started using the ventilator, and it looks like scuba gear. And I’m like, how sexy is that? Because it feels like a robo breather. I’m like, what partner’s gonna see that as sexy. I had to really think about all of those kinds of things in terms of dating and being attractive to the opposite sex and what that means for me, in terms of acceptance, it goes back to not having those kinds of images across the media landscape where the storylines are informed by disability, from a comprehensive viewpoint, where the person is a love interest, maybe they’re running a business, maybe they are parents, maybe they’re out and about moving around in the world, making really critical decisions. We are starting to see more of those images now. And the first thing I think of is on Queen Sugar. It’s informed by Ava DuVernay because she has lupus. And so Aunt Vy has lupus and is a matriarch, she’s married. She’s a business owner, community builder. When you have those kinds of storylines, mirrored in that meaningful way, you can best believe those get absorbed by people. And then we have new ideas and people can conceptualize disability in a much grander way. I’m thankful for shows like that. Echoing all of those thoughts and the ideas of what beauty is. Sex, sexuality, pleasure, kink? How often do we hear that all juggled in the same sentence with disability? There are quite a few Disabled Parents, including myself. And guess what, those kids, you know, were conceived the old fashioned way.

TR in conversation with Heather & Lisa:
(Interrupts)
Not immaculate conception!

TR, Heather & Lisa chuckle!

Heather:
So we exist.

TR in Conversation with Heather & Lisa: 18:22
So let’s go there.

— Music begins: A slow vibrato synth, leads to snare hand claps and a driving confident Hip Hop beat

You said that being disabled really has informed your parenting? Talk to me about that?

Heather: 18:29
Sure. I had to leave my job due to progression of disability. And that was probably when my daughter was like around nine or 10. I was so nervous about the fact that what does this mean for me? What’s the next step? So I really had to contemplate the trajectory of my life. It was doubly scary for me because I had these little eyes watching you, right? And they absorb everything around them had to get real clear. Take that internal deep dive and figure out, what would you like to do next. And I said to myself, you know, you need to provide a blueprint, an example for how it would be for your daughter, and not that she needs to be at home, but be more empowered to make her own decisions and choices. I just moved very slowly and methodically. I started thinking about what I was passionate about. I was thinking about disability advocacy. I ended up taking a class that the State offers. It’s called the Massachusetts office on disabilities, Cam training class, Community Access Monitor. Little steps I was taking to figure out where I wanted to go next and how I wanted to impact the world. I didn’t just want to instruct her. I want to give you an example. What to do when how to be a person that contributes to your own community. Disability impacted my parenting by being more mindful and intentional about all of my life’s choices.

TR in Conversation with Heather & Lisa: 20:03
How old is she today?

Heather:
She’s 28.

TR in conversation with Heather & Lisa:
Okay, what’s the impact on her life?

Heather: 20:08
She is a very strong willed empowered out and proud member of the LGBTQ community, her seeing her mother be involved in, in advocacy circles. It made her more open to just being herself in a very big and loud, authentic way.

TR in Conversation with Heather & Lisa: 20:30
There’s sort of like an “outness”, about disability.

Heather:
Yeah.

TR in conversation with Heather & Lisa:
I dig it!

TR:
What about the impact disability has on a person’s career?

Lisa: 20:38
That is a very important question. And in my case, it’s just starting to turn around. Before my vision became more complicated. And before I even knew all of the resources, assistive technology, I was a senior development officer at a local nonprofit and doing very well in that. But it just got harder and harder to see my work got harder to see on the computer, I couldn’t drive at night. And some of these one on one donor opportunities would be in the evening outside of the city, which meant small streets, maybe dimly lit, and I just couldn’t do that. I actually ended up mutually separating from that position. And it was a long time before I could really figure out okay, what can I do?

TR in Conversation with Heather & Lisa: 21:34
I have this thing about that question. What can I do? I mean, I know a specific,

Lisa: 21:39
What can I do on a computer? What could I do where I wouldn’t have to drive and I could just get easily to places on public transportation?

TR in Conversation with Heather & Lisa: 21:45
It’s very practical. But there’s a larger question.

Lisa: 21:48
I remember the day when I thought, what do I want to do? I want to do something a little more creative. During the pandemic, I went to school for journalism. This has just birthed , well, maybe rebirth, something altogether new in me. I just think that that writing bug was there for a long time. But just dormant.

TR in Conversation with Heather & Lisa: 22:10
Journalism was a real interest of leases in her college years.

Lisa: 22:14
I just kind of tabled it all those years ago. Although I really did love journalism. I didn’t like the career paths that were available then. So I just went in all kinds of different directions. Now. I can work remotely, I can do human interest stories. I don’t have to cover murders and fires and burglaries. There’s so much more out there. I can cover the nonprofit sector I can write about in justices. I absolutely love it. And I love that I can do something that’s mentally challenging. Sometimes it’s nerve wracking, but I get to talk to people the same way I did when I was in development, because that’s all about cultivating relationships, you have to know how to communicate to all different types of people. So I think I’ve found my fit. However, I have yet economically to be at that level.

— From ABC News broadcast: 23:07
Today marks the day, the average Black woman working full time must work into 2021 to catch up with what an average white non Hispanic man earned in 2020.
Let me Repeat that. Today, August 3, 214 days into the year is when an average Black woman worker will have to catch up to her white male counterparts. 2020 pay. According to the National Women’s Law Center, Black women are paid 63 cents for every dollar made by white men across industries.

— Music ends

TR:
Yet!

Lisa: 23:39
I’m much more fulfilled than I had been in a long time since 2011, when I was declared legally blind.

TR in Conversation with Heather & Lisa: 23:47
I’m just curious, do you see that as an opportunity that was presented by disability?

Lisa: 23:54
I guess the disability has kind of opened that because it’s allowed me to do it on my terms. I could do it from my computer and I could use 12 time magnification if I need to. And nobody has to know you know, I could have my screen reader on nobody has to know. So yeah, yeah, I suppose it has.

TR in Conversation with Heather & Lisa: 24:16
Okay, good. Good.

Heather: 24:18
How many similarities? Wow, I’m a Mass Comm major. My daughter was very young when I graduated. So I was going to go to school full time, be a mother full time, but I couldn’t, you know, add on the internship part of it. So when I left college, I started working for a health insurance company. It wasn’t until years later that I got involved in writing and blogging and doing freelance work like that. Disability definitely impacted that sort of rebirth and rebranding you were talking about being online and using the internet. Hasn’t that been such a great equalizer in that way for so many disabled persons? I’m not only talking about obviously a parent, but not a parent in chronic illness, folks who, for one reason or another may not be able to get to a brick and mortar location for being online, they have access to remote work or flexible hours and balancing work life.

TR in Conversation with Heather & Lisa: 25:15
Meanwhile, there are real benefits for hiring and retaining disabled employees.

Heather: 25:20
So many of us have higher sensitivity levels. Have adaptive and analytical skills, logistical skills like nobody’s business, we know workarounds, contingency plans, so many of us are out of the box thinkers. I tell people all the time, you want disabled folks in your employ, in your planning committees, event committees, your communities, your corporations, because there’s a lens and a lived experience that you’re not tapping into that that asset to your organization.

TR in Conversation with Heather & Lisa: 25:53
Do you see any sort of examples that say, okay, yeah, I see some of this taking place now?

Heather: 25:58
The pandemic, really put that into overdrive, right? So many people were saying, Oh, no, we can’t accommodate you in this way, for remote work and being able to access even entertainment and theater, then all of a sudden, voila, overnight. Everyone has access. So it wasn’t a question of why it couldn’t be done. It just couldn’t be done for y’all!

TR: 26:21
One of several things revealed during the pandemic is the inequity in health care,

Lisa: 26:26
I was thinking of an Article I just wrote on Black women in breast cancer, the death rate is much, much higher for Black women. Nationally, it’s close to 40%, which is ridiculous. So there’s that in general disparity of health care for Black women. But then you add this other layer of having a disability. Now I am in the two worlds.

TR in Conversation with Heather & Lisa: 26:53
That second world, if you will, is this ability.

Heather: 26:56
It’s been 32 years, since the Americans with Disabilities Act signing, we’re still having to advocate so much for the smallest of rights, it really is daunting and exhausting. nearly 62 million in this country identify as having some form of disability, one out of four people 25% of the population, nearly 1 billion globally, it’s a sleeping giant of a demographic that needs a much better marketing plan.

TR in Conversation with Heather & Lisa: 27:28
So when someone who is blind, for example, walks into a medical establishment,

Lisa: 27:32
I generally am carrying my white cane. And it’s amazing to me how they’ll see the white cane and still give me a clipboard. People just don’t get it. They only know this is what I do. I’m the receptionist, this is what I do. You come in you tell me your name, I give you a clipboard. Look, I can’t fill out your little iPad. I know it’s cute. And it’s like the way to go here. But that’s not going to work for me. And there have been times when they’ve been helpful. And there have been times when I’ve been dismissed. Some of the same challenges can be addressed if there were more sensitivity and people to help. Because it’s not only vision, it’s not only physical, their language barriers, there’s not being tech savvy,

Heather: 28:19
lack of cultural competence regarding disability, gender, and race, especially when you have providers who are not very knowledgeable about disability, but also, maybe the hospital or healthcare setting is not outfitted for receiving you in a very physical and literal way. Maybe the doorways aren’t wide enough, maybe you can’t access the bathroom because it’s inaccessible. Or if you’re someone like myself, who had difficulty getting on the exam table, because you needed a hydraulic one. And so you had to forego your GYN exam, because you couldn’t access the table that resulted in me filing a complaint with the patient advocacy department. So the next time my follow up visit, that hydraulic exam table was there because along with that complaint form, I included a copy of the part of the Americans with Disabilities Act. That said I had a right to accessible medical care.

TR in Conversation with Heather & Lisa: 29:16
So you have to advocate just for you to go to the doctor and give them money.

Heather: 29:22
Had to do it more than once to a different providers office. You’re not always believed, so many stories of pain management, managing the variety of disabilities, whether they’re a parent, not a parent or include chronic illness, we should all have the right to have medically accessible care that is done with culturally competent providers.

TR in Conversation with Heather & Lisa: 29:43
That’s medical providers that are not only familiar with the differences, but also value them. That’s reflected in process policy and services.

Heather: 29:52
When I was younger, I was only considering apparent disability and our families. How many of us have died At heart disease, I have died from complications of diabetes. My father, he ended up dying of kidney disease. I took care of him for the last 11 years of his life in our home, just an interdependent relationship, because he’s helping me physically. And I’m helping manage his entire health care, all while raising a daughter. And then also having my nephew come into my home through a DCF kinship placement, Department of Children Family Services placement as a older teenager who had intellectual disabilities.

So many of us live interdependent lives. And when juggling so many responsibilities, we are practicing those kinds of advocacy skills in real time. That’s the real commentary for a lot of Black disabled women.

TR: 30:47
All you have to do is follow disabled Black women on social media. And you’ll know that we’re just touching the surface of the many challenges they encounter on a daily basis. And yet, they see hope.

Lisa: 30:59
The small things can mean a lot. I have had to say that I’m visually impaired I use assistive technology. I’ve got well, how can we accommodate? Do you need us to send you things in some other file? I went through a seven month long Fellows Program for journalists, and they were absolutely wonderful. Like they just insisted that like, look, we don’t want this to stress you out. It’s not as off putting, as it used to be.

I said earlier, I had to leave my job. Because they just didn’t know what to do with me. It’s really changing for the better. I mean, you have media platforms that are exclusively devoted to people with disabilities. Are we there? Absolutely not. But there is hope.

TR in conversation with Heather & Lisa:
Cool.

Heather: 31:45
I love it when I’m able to connect with more Black women with disabilities, whether it’s a parent non apparent or includes chronic illness, if their parents, whether they’re into the creative arts, I love being able to connect with them and just learn more about their lived experience and how that evolved over time. Because I always feel like I learned every day, that helps me, in my own self awareness, become a better advocate

— Music begins: A melodic synth piano opens to a inspiring mid temp heavy kick Hip Hop beat.

TR: 32:15
today, passing those lessons on to others.

Heather: 32:19
It wasn’t until I got heavily involved with repeat exposure that I began to deliver how vast and wide that disability is, there comes a culture of political movement, history constituency, there wasn’t an indictment. It’s an identity marker. And even the word itself, disability, the di s prefix is not only not an option, but has a Latin and Greek derivative, meaning dual into so hence another way of doing and being in the world, and so much easier to adopt that first person language and say, Black disabled woman. This is why there will be no ambiguity in that meaning, because I’m not shying away from any of those things. You know who I am is the amalgamation of all my choices. And that doesn’t mean that I’m glossing over any frustrating aspects of disability because for sure, they are there to give a full bodied expression in meaning of what it means to live with a disability to have a disability or to be disabled. It is a very comprehensive, layered experience.

TR in Conversation with Heather & Lisa: 33:33
Full bodied expression. That’s what I’m talking about. Can you handle all of this greatness? Now I need you all to check out and support our sisters. That’s my fellow Libra. The new addition to the Reid My Mind Radio family from Boston. You see how I did that? New Edition, Boston.
— “Cool it Now” New Edition

Heather: 33:56
My website’s SlowWalkersSeeMore.com. So that’s like my condition and my personal mantra.

TR:
Facebook, Twitter and IG.

Heather:
at h Watkins nine to seven.

TR in Conversation with Heather & Lisa: 34:10
You can find Philly’s finest Lisa Bryant on Twitter and LinkedIn.

Lisa:
@ByLisaBryant

TR in conversation with Heather & Lisa:
Appreciate y’all for coming here and sharing your experiences. And you know, that makes you official, members of the Reid My Mind Radio family. So salute y’all, I appreciate you.

Lisa: 34:28
Thank you, Thomas. This is great.

TR: 34:31
Big shout out to all our sisters out there doing your thing. In fact, that’s how we began 2022 doing your thing with disability. We then had to flip the script on audio description. You know how we do it. And by the way, don’t forget to check out this year’s ACB Audio Description Awards Gala, hosted by yours truly. This year. I’m happy to say I have a co-host one of our Reid my Mind Radio family sisters and alumni, Nefertiti Matos Olivares, who is also providing audio description. We had some fun filming and I hope you all check it out. No spoilers. It drops on November 29 2022 On Pluto TV and of course ACBADAwardsGala.org.Check the site for times and official information.

So this is the last episode of The Year y’all but I feel like spreading some holiday cheer this year. So make sure to keep a watch out for a special episode. The best way to do that is to make sure you subscribe or follow wherever you get podcast. And we have transcripts and more at ReidMyMind.com.

All you got to do is remember it’s R to the E I… D!

Sample: “D and that’s me in the place to be!” Slick Rick
NS be in a place to be
TR:
like my last name!

— Reid My Mind Radio Outro

TR:
peace

Hide the transcript

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:

Greetings Reid My Mind Radio Family!
Welcome back to the final series of 2021. We call this one: Young, Gifted, Black and Disabled.

Shout out to my brother AJ Murray who co-hosted and produced an episode with me last year with that same title. It is the inspiration for this series.

Young: Well, that’s relative. It’s up to each of us to define how we feel.

My maturity level has probably never passed 5 years old. I’m extremely silly, y’all!

I’ve been working on the gifted part since the other areas are undeniable. I’d like to share with you today and let you judge my progress.

I’ve been enhancing my own ability to read minds. I know, it makes sense right, Reid my mind. Now, I’ll attempt to read yours.
But first, I need your full attention.

If you’re walking on a treadmill, don’t stop, I don’t want to be your excuse. Just listen carefully and follow along.

Choose a number between 1 and 10.
Now multiply that number by 2. I’ll wait! Come on y’all I shouldn’t have to wait this long.
Again, choose a number between 1 and 10 and then multiply it by 2.
Ok, add 8 to that number. That’s right, 8.
Now, I need you to divide that number by 2.
Ok, you with me?
Subtract your original number from that number.
Ok, Braille users should get this part quickly, take the corresponding letter from the alphabet where A is equal to 1. B is 2 and so on.
Now think of a country that starts with that letter.
Now take the next letter in that country and think of an animal that starts with that letter. What color is that animal?

Now just say, out loud, “Reid My Mind Radio is my favorite podcast!”

Got it, You are thinking of a gray elephant!

If I got it right, well you need to show a brother some love. Head on over to ReidMyMind.com and hit that link that says survey. It only takes a few minutes. Or hit that link that says Shop and get yourself some of our cool Reid My Mind Radio inspired merch.
Or give us a shout out on social media. @tsreid on Twitter and check us out on InstaGram at ReidMyMindRadio.

Ladies and gentlemen, my name is Thomas Reid. I’m your host and producer and I’m really not a magician. But we are about to hit you with some magic!

AbraCadabra baby!

— Reid My Mind Radio Theme Music —

Jeanetta:
I am Jeanetta Mary Alice Price, founder and CEO of Blind Girl Magic.

I am a chocolate voluptuous sister with a big ol curly Chaka Khan looking black wig that really compliments my outfit, which is a black dress.
It’s a little, but I guess we don’t need to know that. It goes down to my knees.

TR in Conversation with Jeanetta:
Alright! That was a very nice image description. That Chaka Khan’ thing, that paints an image for somebody who knows what Chaka Khan look like.

— “Chaka Khan… From “I Feel for You”–

TR:

Chaka Khan represents a strong, confident, proud Black woman. In fact, she said she’s every woman, and it’s all in her.

— “Woh, woh!” Chaka Khan, “I’m Every Woman” —

Confidence we know can be tested. Blindness, disability that’s like a graduate level exam.

Jeanetta: 02:02
At the age of 25, I began to lose sight due to aggressive glaucoma and also Cornea disease.

After the cornea transplant, the glaucoma became uncontrollable. So glaucoma is the primary cause of me losing sight.

TR:

The causes of blindness are unique to everyone, but there are some common reactions: like isolation.

Jeanetta:

When you isolate yourself, then, you know you allow the negative thoughts. A lot of the misconceptions just begin to take over.

I lost my fiance, but finding out losing him was a game. So that was because he was not my husband. But we was engaged and this is what I said.

I was having my procedures back to back. And I was like, Oh, I’m going down the aisle as no Blind woman, who does that? That’s how naive I was about blindness.

We bought our home. And I just kept pushing away and back cuz I was like, No, I can’t do this. But it took for me to really walk away from this situation to begin the healing process.

TR in Conversation with Jeanetta:
Did you have any sort of experience with blindness and disability?

Jeanetta:

You never know when you’re looking at your destiny. When I was younger, like say, junior high school. There was a blind man in my community. I used to see him walking with his white cane.
I recall being on a school bus, sometimes just staring at this man. He was independent. But when it came to younger, blind women, I’m 25 I felt like I was at the prime of my life. I didn’t see that. I’m from a small community, Beaumont, Texas about an hour and a half away from Houston, Texas.

TR:

Of course blind skills training is crucial, but one of the most important aspects of adjusting to blindness is meeting the people like you or those you can relate to who have similar experiences.

Jeanetta:

One of my professors introduced me to the Federation. And I went out for a scholarship. I did not receive the scholarship. But I did gain a community. And I knew I wasn’t alone. So that was the game changer.

I was using my resources with division of blind services locally but to be able to begin to network and build sisterhood with other blind sisters. That was priceless for me. Because I knew if they can do it, then I can do it as well.

TR in Conversation with Jeanetta:

How’d you find them? Other blind sisters?

Jeanetta:
I went to my first national convention, with the National Federation of the Blind. It was in Texas at the time in 2012.

I never seen that many blind people in my life.

I don’t do dogs. I’d just never seen blind people, and they moved so fast. And they was a little rude too. They would run you over! I’d tell anybody, it’ll make you gain blind skills, because you have to protect yourself.

I begin to just go to the different seminars. They had a talent show. And I was like, I don’t do talent shows, but they asked me to do a poem, and I did.

Once I became open, then I began to meet other blind people

I believe in networking, and the Federation allowed me to meet other blind people my age and people that I could connect with as well.

I love networking with my blind brothers and sisters. I believe it’s priceless. Because if there’s something I don’t know, then I can tap into one of my resources, and they can definitely help me out.

TR:

When we talk about adjusting to blindness and other disabilities, so much of the conversation focuses on learning to accept help. It can take some time to recognize the other side of that coin. That is, you too, as a person with a disability, have a lot to offer others.

But after all, it’s called an adjustment process, because it takes time.

Jeanetta:
From 25 to 29, I suffered with severe depression.

Everything that I’ve always associated blindness with, like losing my job, just not able to drive, everything was negative. I didn’t want anything to do with blindness.

Long as you’re in denial, your healing cannot start.

I’m a writer, I didn’t write from 25 to 29. I didn’t pick up a pen. I didn’t do anything. I was angry. I was bitter. I was non productive.

TR:

That desire to write and create seems to be a part of Jeanetta’s identity.

Jeanetta: 17:14

My fifth grade teacher actually told me I had a gift from God. She placed me in theater arts when I was in sixth grade.

Everybody in class, they used to say she don’t really read, she reads! (Strong emphasis on the latter “reads”)

When it comes to expressing myself, I’ve always been very vocal, very bold.

Ever since then, not only did my school embrace me, my church, my family, everybody embraced my gift.

TR:
An obvious challenge for a writer new to blindness is access.

Jeanetta:
I use all tools.

I’m on my computer if the spirit Hits me, two or three o’clock in the morning, I’m on my phone, I do voice audio.

Sometimes I get up real early, in the morning that’s a time where I love to write and I just pull up my laptop. Sometimes my Victor Reader Stream, you know, it’s whatever I have my hands on at that time will serve as my tool of writing.

I tell people, whatever your style of writing is, just embrace it. Before I became knowledgeable of different tools I used to just get a sharpie. But even though I really couldn’t see, I was still releasing what I was feeling. That was my way out.

As I begin to just really grow in my blindness, then here come the poetry, where now I can write from a healing place.

TR:

Notice how for Jeanetta the act of writing soon after blindness wasn’t really about editing her own words as much as it was an opportunity to purge some heavy emotions.

Her passion for writing was obviously strong enough where she wasn’t deterred from finding new ways. Proving when it comes to the art it’s just never really about the tool.

Jeanetta:

I was always a paper queen. I wrote everything. It was definitely hard. But once you accept what you’re going through, then you start finding ways.

I was like, Okay, well, I can’t do this. But what can I do? So I stopped focusing on the I can’t and the I can’ts became my best friend. I never forget that same fifth grade teacher. Miss Maduro, we used to call her Miss Mad when we worked her nerve. She said she gave us those 10 two letter words if it is to be it is up to me.

As I began to lose sight, I thought about my fifth grade teacher so much. And how she really changed my life because she helped me find my purpose.

TR:

That ability to accept what you’re going through is so important to really understand the challenge. A very common experience is to blame blindness. Therefore it’s natural to reject any association with it.

Jeanetta:

I don’t know if they thought it was a compliment. And maybe they’ve done this to you before.

“Are you blind? You don’t look blind!” Okay, what does blindness look like?

So when people would tell me, Are you blind, like, No, I’m not blind. But then, when I began to embrace my blindness, I begin to just walk in my purpose in my truth, and I knew all the time that blindness is a mindset.

TR:

I think we should really hear Jeanetta express how she feels, in her way.

Jeanetta:

Are you blind?
That’s the question at hand. Before they even shake my hand. The only thing that they see for sure is not me, of course, is my b l i n d. Standing bold and beautiful as I tap across the room shoreline and with a burst of confidence.
Excuse me, ma’am. You don’t look blind? Well, could you please explain to me how blindness look? See, blindness is not the presenting problem. The lack of knowledge and misconceptions of blindness serve as society blindfolds. Low expectations, create social barriers that prevent us from reaching our goals.
Excuse me, ma’am? Why do you walk with that stick? That is the question. Correction. This is not nor would it ever be a stick. It’s my cane. And in the Blind community, we name our cane. So please, show some love for my bestie. She never leave my side. And a matter of fact, she’s my eyes. I walk with faith into a world of possibilities. Believing that I can tap into my vision. Faith that detects roadblocks allowing me to overcome life obstacles, change direction and discover the impossible.
Excuse me, ma’am. Are you blind? That is the question at hand before they even shake my hand. Are you blind? Yes. Once I finally said it with no shame I took back my name is Jeanetta Price and I am blind. That’s when I realized that the question all this time was not for me. But for you who have sight but no vision. Are you blind?

— Music begins – an energetic, upbeat bouncy Hip Hop beat–

— Sample: “: Now wait a minute” “Shout”, The Isley Brothers–

TR:

Hey did you know;
Reid My Mind Radio, is now on Facebook and InstaGram.
We’re going to do some things on these platforms so stay tuned.
You can find us on each platform @ReidMyMindRadio.

Don’t forget you can also ask your smart device to play
ReidMyMindRadio by T.Reid on your
preferred podcast provider.

Make sure you say that full statement including, T.Reid.

Finally, you know we’re on most podcast platforms so why not just follow or subscribe there.
That way, you’ll never miss an episode.

Tell a friend to do the same. Let them also know that we have transcripts and more at ReidMyMind.com. Now you’re already family so you know, that’s R to the E I D!
(“D” and that’s me in the place to be. Slick Rick)
Like my last name.

Now back to the episode.

— Music comes to a slow end.–

TR in Conversation with Jeanetta:
So tell me what is Blind girl magic?

Jeanetta:

Oh, I thought you’d never ask? (Spoken in an ultra innocent tone with a Southern twang!)

TR in Conversation with Jeanetta:

(A very hearty laugh in recognition of her surprised response!)

TR:

That right there is a part of Blind Girl Magic. It’s subtle, but not really!
Like her eye catching fashionable t-shirts.

Jeanetta:

My last shirt was in May, my mother’s day edition. It said “I got it from my mama”

It’s A beautiful teal turquoise shirt with a shimmery I. The M, one of the legs was the white cane. And the letters were shimmery and purple. And it was like Mama was big. I sold over 200 shirts all over the world.

Blind Girl magic is for everybody. Not only do I rock Blind Girl Magic, my niece’s, my co-workers. It’s not just a blind thing, it’s a movement.
TR:

A movement that’s about starting conversations.

Jeanetta:
Many people tell me how when they out and about in the community and they rock in Blind Girl Magic it’s an eye catcher, because the shirts are beautiful. We are beautiful.

We don’t have to force feed people when we want to share about blindness. But if we rockin’ Blind Girl Magic gear, and they looking at all this like is that a white cane?Yeah, my cane is symbolic for independence and blindness. We can have those conversations and we don’t have to feel alone. I felt alone in my community.

TR:

Starting conversations not only through random encounters, but
by partnering with peers and hosting events within our community that embrace and highlight blindness.

Like one titled I Am Black History.

Jeanetta:

It was a total of 20 blind and sighted Individuals which did monologues. Each monologues were like five minutes. And each person was able to pick somebody in the past or present in history. At the end of that monologue, they flipped it. And they began to say, I am black history and began to share about themselves. We are history makers as well.
So many times we don’t acknowledge I know, I’m bad at it, you know, people like, “Jeanetta, I didn’t even know you had a master’s in counseling, or I didn’t know you did, you know. So many times, we don’t really acknowledge our greatness.

TR:

Part of Jeanetta’s greatness is using her talents and experience to help those who as she mentioned earlier feel alone as a result of blindness.

Blind Girl Magic offers workshops that provide an opportunity to explore the inner emotions through words. It’s called the Write to Heal.

Jeanetta:
That’s W R I T E.

I believe in the power of writing. God poured in me that there’s healing in your words, not just for you, but for others as well.

What we have is a line up of poets. So I’ll have some of my poetic Blind sisters with me. We’ll perform, we’ll share our truth. And because we want to be vulnerable, so people can feel comfortable and share their truth.

People think, Oh, she got this “S” on her chest. And they don’t even have a clue of some of the things that I went through. I’ve been there. And every day is healing for me.

TR:

After performances and Q&A, participants are encouraged to take about 30 minutes to write.

Jeanetta:

Maybe 20 minutes to write and I’m gonna put a little heat on them. I don’t want them to think about it. I want them to write about it. Because if you have too much time to think then you might try to change some things and just allow it to flow. And so, afterwards, if those who participated, they want to recite the spoken word they can, but sometimes it’s personal. I respect that too.

We can also encourage them and then you know that you’re not alone.

TR:

These workshops aren’t just for those experiencing blindness.

Jeanetta:

I’ve worked as a behavior specialist for like, four years. My Master’s is in clinical mental health counseling. Writing was a way that I was able to help my students to express themselves without using profanity and end up being suspended from school.

I used to do the Write to Heal seminars. I made them write. They say, “Miss Price we write more here than we write in English.”

One of my most recent was for a school in New Jersey. I did the Write to Heal seminar for the administrators and the teachers.

If I have a teacher that’s real with me and just sharing, you know, not afraid to be open as well then they respect that as well. You know, so more of your kids are coming to talk to you.

TR:

Jeanetta says student’s can feel when authority figures are authentic and encourages teachers and staff to recognize that.

Getting them to be vulnerable is part of accessing their authentic selves. Jeanetta was kind enough to share some of that vulnerability with the Reid My Mind Radio Family. She calls this one: My Left Eye.

Jeanetta:

My left eye left me long time ago.
My left eye is lazy. It drives me crazy, baby.
My left eye, always causing problems.
Attention seeker.
Stop sighted people in their tracks stare at the glare of my left eye.
I wish I was invisible like air.
Can you feel me?
My left eye just refuse to be a right eye.
Never following procedure, failed attempts after failed attempts.
See my left eye is clouded with insecurities.
My left eye sings the Blues clueless of the melody rocking and rolling.
My left eye has no rhythm, grove to his own beat.
My left eye left me numb to the pain of the spoken words in the curiosity of the unknown.
I should have known not to write this poem about my left eye.
As I recite I want to punch the lights out my left eye!
See, I’m not mad that you left, but it’s how you left.
No warning signs or trace of evidence in sight.
I swear my left eye left me in the darkest place, spiritually blind, my left eye.
Trust me, I tried to resuscitate my left eye performance, see people realize that I am hiding behind my designers.
Blinded by the bling, my left eye is a shady queen.
I’m taking back my crown.
My left eye do not define me.
I am a queen perfectly designed by the King.
See, my left eye is beautifully created.
Ocean blue scenery mixed with the clouds of joy.
My left eye is my testimony.
How I gained vision on my journey of losing sight.
See, my left eye is the center of attention.
Did I mention?
Today starts the shades off movement.
This is not just about me.
Let’s take our shades off together on three.
You will no longer have power over me, two.
I am perfectly designed by the King, one.
Today I removed the shades of self hate, doubt, and negative self talk.
Remove it!
Generational curses, addiction, physical and mental abuse.
Remove it!
Dream snatchers, haters, envy, jealousy.
Remove it!
Remove the mental mass and join the movement by setting yourself free and share with the world boldly, your beauty.

So that’s what you’ll get at the Write to Heal.

TR in Conversation with Jeanetta:

Wow. (in awe)

TR:

Blind Girl Magic is the fashionable gear, the workshops and events, the healing. Ultimately though, it’s about that movement or journey.

Jeanetta:

At the age of 21, I had a brain aneurysm. I don’t know if I shared that with you.

They told my mom that I wasn’t gonna live. If I did, I’d be a vegetable and I wouldn’t be able to walk or talk and you know. And you know I aint stop talking now, right.

TR:

So by 25, when the vision loss occurred, Jeanetta was once again really just finding her stride.

Jeanetta:

I took it pretty hard. And I remember just for days not getting out of bed not wanting to live. I was too afraid due to my Christian background to take my life but I will wake up and ask him Why did you still give me life? I used to sleep a lot because I actually just wanted to just leave this place. I just thank God for not listening to me right? Because I was blinded by my blindness. I had no clue that I could live my best life out of sight.

TR:

We don’t often talk about these feelings when it comes to adjusting to disability. Here or elsewhere.
I’m guilty of wanting to promote positivity and optimism.
But I want to also be honest and these feelings are real.

If you find yourself struggling with these thoughts, call this number;
1-800-273-8255. There’s no shame.

Things get better. And our feelings change. This is Blind Girl Magic!

— From
Jeanetta:
Blind girl magic is the type of magic that struts in a row with her white cane extended.
Her hips shift like the motion of the eyes of the sighted.
Who would have guessed that this blind girl possessed magic.
Abracadabra.
Now you’re convinced that I have some magical superpowers with a supernatural S on my chest
Well, that will be yes for success.
As I leap over obstacles in life, dodge negativity, slam misconception of society, slap our kids in the face when I did that is a fact that blind girl magic goes back to Helen Keller.
Way back to Harriet Tubman, born into slavery escaped the freedom but she did not stop. She went back and back and back to leave us the freedom.
Blind girl magic is built off the shoulders of phenomenal women.
Blind girl magic is the independent movement that is leading our blind sisters to freedom of depression, low self esteem, lack of confidence, anger, bitterness, rejection, Abracadabra, You are set free, blind girl magic lives within me.

TR:

Sometimes I think I should stop and give you a bit of audio description of what was taking place during the conversation. Hmm, I’ll call it Audio ReidScription”

— Rewind —
— Portion of Jeanetta’s poetry begins and is lowered as “Audio ReidScription” begins. —

Jeanetta’s audio:

Way back to Harriet Tubman, born into slavery escaped to freedom but she did not stop. She went back and back and back to lead us to freedom.

Audio ReidScription over Jeanetta’s audio:

All of a sudden, as if driving with a diamond in the back, sun roof top…, Thomas leans back in his chair with a big toothy grin.

Jeanetta’s audio:
…that is leading our blind sisters to freedom of depression, low self esteem, lack of confidence, anger, bitterness, rejection,

In a comic strip thought bubble hovering over his head, text appears : Go head Sis!

Jeanetta:

I recall when you couldn’t say “Jeanetta” and “Blind” in the same breath, now I have the nerve to own a company, Blind Girl Magic. I took back the power.

In my blind journey, I accomplished much more as a blind woman than I ever did as a sighted woman. I went back to school and received my bachelor’s, my masters have my own company.

I always tell people it took for me to lose sight to gain vision and once I gained vision God allowed me to see better.
But then I knew it wasn’t just about blindness.

TR:
At first I thought that was poetic or a metaphorical way of seeing her blindness.

For years, Jeanetta was in and out of surgeries and eye procedures. Her doctor offered different specialized contact lenses. They did nothing to provide more sight. In fact, the left eye only offered a bit of light perception, but the doctor determined there was more available in the right eye. Jeanetta just didn’t want to experience the eye pain.

Jeanetta:

Doc I have blind skills. Leave me alone.

But my doctor knows I’m a little feisty or whatever. But he knows that I trust him and I follow his lead.

TR:

The doctor wanted to try a new contact lens

Jeanetta:

They say the older you get, and people of color, our glaucoma begins to simmer down.

My doctor, he was just like, you still have something there and your Glaucoma is stable at this time. So he was super excited about it.

It was a challenge getting the contact in. Because my eyes were pointed, it was just a struggle, and I was crying, and everything.

My doctor said, Now look at your face. I haven’t seen my face in over 15 years.
So the doctors expected me to see better. But they did not expect me to see 2040.

I receive a special contact collar square lens that I put in, insert every day and take out every night. But sometimes, I don’t use my contact lens. I don’t ever want to lose, is my blind skills.

TR:

I’m sure there were all sorts of thoughts and feelings taking place, plus Jeanetta had to learn how to use vision once again.

Jeanetta:

I had to train myself not to trust my eyes, because I always had enough sight to get me in trouble if I ended up falling off the curb and stuff like that.

TR in Conversation with Jeanetta:
That’s a really interesting sort of twist, but I think that says a lot because you could have bounced, you could bounce you could be like, I’m out of here. (Chuckles)

Jeanetta:
I’m gonna be honest with you.

I know a young lady, we had the exact same condition, she received that contact, and we have not heard from her in the Blind community at all.

Everybody wasn’t happy for me. Sighted or blind.

So now it’s like, oh, you’re not blind enough to be a part anymore. It was bittersweet.

God had to remind me like who I am, and I have to walk in my purpose.

I’m going to continue on my journey of where he want me to be. Yeah, I could have bounced. But I’ll never, never this, this is who I am. And just like He gave it to me, He could take it away. And if you take it away today or tomorrow, I know, I’m okay.

My thing is this, I know that I can do it without sight. Because that’s what I did for years.

TR in Conversation with Jeanetta: 52:00
Okay, I believe you, and you reppin, that Blind Girl Magic. You rocking it. You can’t get away from it. You don’t want to get away.

TR:

I’m really not sure how one could just give up what has become a strong part of their identity. Especially, when you can see the impact it has on those you care about. For Jeanetta, working as a school Behavioral Specialist, those were her students.

Jeanetta:

Our kids were victims of their environment, a lot of violence, crime, everything. However, for my kids, to see me tap into this school as a blind woman. And then to see me to be able to drive to school as a blind woman that’s been gifted an opportunity to see better again, that gave them hope that it’s not over.

As the behavior specialist at the school, I worked with all the kids at risk. I really was having a hard time, cuz, I see the greatness up on my kids and I see some of my kids drop out and just give up. My story, my testimony. It gave them hope. They like for them to witness that was priceless.

TR:

Jeanetta’s whole story is poetic.
Meaning it’s a chance for all of us to interpret for ourselves.

This was sort of a challenge for me.
Not on a personal level but rather as someone who is thinking of the listener who’s possibly in the early phase of their adjustment.

I hope you didn’t in any way check out.
I need you to know that I know hearing this can spark all sorts of feelings that don’t necessarily equate to jealousy of another person, but maybe questioning your own worth or value.

For me, the hope in Jeanetta’s story isn’t really about her getting access to some vision. That’s another tool. Similar to the way I wouldn’t be jealous of someone who has a fancy powerful computer or gadget nicer car. What it really comes down to is, whatcha gonna do with it!

Jeanetta’s continuing to find ways of spreading her magic to help heal.

She was a finalist in the 2021 Holman PrizeContest. This conversation was recorded prior to the announcement of the winners.

Unfortunately, she wasn’t selected. But don’t get it twisted, she definitely won!

Jeanetta:

When I made it to the final list, that opened my eyes that being real with you and sharing your truth. People will respect that.

There’s so many times that we, especially as an African American woman, we’re frowned upon. You’re too loud, or you’re too big, or you’re too this.

It’s okay to be you.

It took me a while to get here to be unapologetically Jeanetta Price and to have people to just really embrace me and appreciate my truth.

TR:

Understanding and accepting that what makes us different should be appreciated, well yeah, that’s priceless.

Jeanetta

I am a bold, black, voluptuous, advocate not only for the blind, but for beyond. I stand in my truth.

I am healed from insecurities and I am healed from negative self-talk.

Every time I get in front of the audience, I have that white cane. I’m tapping and making room for the next Jeanetta .
Everybody else that come behind me that you don’t look like the norm. We all have a purpose on this earth. It’s okay to be you.

TR:

You all can reach out to Jeanetta Price as she rocks that Blind Girl Magic and serves her purpose.

Jeanetta:

Facebook and Instagram and also Club House Jeanetta Price, Blind Girl Magic either one, it’ll pull up.

TR in Conversation with Jeanetta: 1:01:39
Jeanetta Price. Let me tell you right now, you are definitely now an official member of the Reid My Mind Radio family!

Jeanetta:

(Giggles)

TR:

Not only did she share her journey with us, but she even gave a little something extra, check this out

Jeanetta:

It’s called I’m From.

I’m from double dutch to hopscotch.
From what your mama gave you a hoola hoop?
I’m from what cartoon said yabba dabba do not. Screw you.
I’m from pressing combs to Jheri curls from skipping just for me.
Graduating straight to Super TCB.
I’m from 123, red light, Duck Duck goose, hide-n-go-seek what?
I’m from mayonnaise sandwiches and syrup sandwiches and peanut butter, Mama where is my jelly at sandwich.
I’m from grandfather hustle selling 25 cent cool cups.
I’m from when grown folks talk children shut up.
I’m from when your mama made you go to church every Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, Saturday.
You was there too.
I’m from what a church folks did the holy dance and now they TikToking.
Well, chicken thunder, that reminds me I’m from a family of big mouths that cause big fights and Big Mama stepping and everybody got right.
I’m from God first family next in line come on down to the price is right even when we wrong. I’m from box fans in the windows of the projects .
I’m from my sister sitting on the front porch doing my crochet braids drinking Thunderbird mixed with a pack of cherry Kool Aid.
I’m from finders keepers losers weepers.
I’m from one size fit all but not all this.
I’m from when stripper poles hung our clean clothes.
I’m from stop, everybody get down, it’s a stick up. Psych. That’s just my cam folks running from the popo. My brother on the dice with his pocket swole. Baby daddy in jail, sister on the corner selling fruit cocktails.
I’m from telling on big sister and hiding behind big brother.
I’m from begging my siblings to please take me to the playground because that’s where all the kids hung around.
Question: when the last time you seen some children at the playground?
I’m from when it ain’t gonna cost you a dime to stay out of mines?
I’m from ain’t no ones where we come from and adversity don’t want none.
I’m from losing sight to gaining vision. Rewind I’m from losing sight to gaining vision.
I’m from where my brother reid My Mind and my sisters feel my words.
It’s not about the sight loss but the vision gain.
I’m from when we get up, dress up, and show up.
I’m from backstroking in the river of faith.
I’m from what a blind is the new vision.
I’m from living my best life out of sight, let the truth be told I am chosen.

TR in Conversation with Jeanetta:
Huh! See, that’s how you do it! That’s how you do it right there. Appreciate that, look at that, look Ma. I made it, I made it.
Jeanetta:

You so crazy!

TR:

Holman Prize, y’all missed out! From my humble perspective, you had two dynamite opportunities. One with Ms. Jeanetta Price and another with Reid My Mind Radio alumni Dena Lambert.

Her ambition, archive the experiences of the remaining Black & Blind men and women who grew up in segregated Blind schools. Here, in the United States.

That to me sounds like an exploration that is truly worth supporting.

Coming out of 2020 when it was fashionable and safe to say Black Lives Matter. I guess in 2021 it’s back to playing attention.

I didn’t grow up Blind, but I do know that those who were Blind before me gave me the opportunity to have what I do. They were Young Gifted Black and Disabled and to them, I dedicate this episode.

Audio: Reid My Mind Outro

Peace!

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