Pigeonhole Episode 33
[bright ambient music]

CHORUS OF VOICES: Pigeonholed, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole, pigeonhole.

CHERYL NARRATING: On February 17th, 2021, Millersville University hosted an online screening of Who Am I To Stop It with a panel afterward. This was nearly a year into the pandemic lockdowns and right in the middle of snow and ice storms and power outages in many places. Today’s episode is the Q&A conversation between me and my two very cherished panelists Toni Hickman and Ann Millett-Gallant.

CHERYL: Again, thank you to everyone who helped put this event on. I am struggling with Zoom to see Ann and Toni. [chuckles] So, I’m taking moment here kind of gabbing. It’s really exciting for me to be able to come to universities and do these kinds of conversations afterward. It means a lot to me, and I have had the chance—there you are—I have had the chance to do conversations with the people in the film, and that’s really special. But this is like, I don’t know, to me, special beyond words to be able to invite the two very esteemed guests who are here today.

And I’m gonna let y’all introduce yourselves however you wanna introduce yourselves, and, you know, about your art, your experience with brain injury. And I have series of questions, and then I’ll open it up if there’s time to questions that are in the chat. So, feel free to add questions. And Toni or Ann? You wanna fight for who goes first?

ANN: I’ll go first…if that’s OK. Can you hear me? OK. I’m Ann Millett-Gallant, and I am, by training, an art historian. I’m a congenital amputee, so I’ve been disabled since birth. I experienced an accident that caused me to have traumatic brain injury in 2007, and it affected my physical and my cognitive, it created physical and cognitive impairments. And I’ve dealt with a lot of my anxiety and trauma through art, through formal art therapy practices, and also just through making my own art. It helps me to be able to, in art therapy, they talk about sublimating your feelings, bringing material form to them, being able to look at something. It also is sort of this soothing. You know, if I’m having an anxious day or something, I can go paint a cat, and it cheers me up. [laughs] You know, it cheers me up, and that’s…that’s therapeutic in itself.

CHERYL: That’s beautiful. And Toni, before you go though, I forgot. We were supposed to describe ourselves. We had Audio Description in the film, and I wanted to continue with that trend and have us describe ourselves. I do every time, and I forgot because I forget everything. I was even late to this event. So, I’ll go after Toni, but Ann, would you mind describing yourself and what’s going on in your background? And then Toni, introduce yourself.

ANN: Oh. I’m a Caucasian woman, and I’m wearing a bright, what would you call it, blue and orange headband. And there’s some paintings behind me that you can see of cats. And…they’re very colorful. I also do some self-portrait work, and I represent my disabled body. And I also represent close-ups of my sites of impairment and kind of aestheticize them.

CHERYL: Beautiful. Thank you. Toni!

CHERYL NARRATING: I’ll jump in here to say Toni had trouble connecting. She wasn’t muted, but we couldn’t hear her. I’ll skip ahead a little.

CHERYL: Y’all, this was not Toni’s plan, but she’s in Texas, and her power kept getting turned off, as happens in states like Texas where the power is deregulated, and they don’t have a backup plan. So, they’re doing rolling blackouts in a lot of Texas, so that’s why she’s moved to her phone. And we lost her. OK. I’m gonna maybe describe myself then and buy a little time for Toni to come back. But I am a white woman with olive skin and poofy, long, curly brown hair and big glasses. I have a fabulous array of odd pillows, cat pillows, behind me, and a giant kinda velveteen cat castle back there. My cat is asleep next to me. Hopefully he will come join, and then I can tell y’all what he looks like. I am throwing back to my days as a native Texan in a pearl snap button down blouse. It’s black with every elaborate red embroidered flowers. So, that’s the description of me. There’s Toni! Perfect. And she’s connecting to audio. Great timing.

CHERYL NARRATING: But it didn’t work. Some people jumped in here with tech suggestions. And while the team worked on them for a few minutes, our host, Dr. Neuville, broke me from my perseverating on Toni’s connection and got me back to the conversation. We’ll skip all that.

CHERYL: Ann, would you, you wrote a really incredible memoir about your brain injury experience and about art, kind of in the way you were talking about it. Do you wanna tell folks about that book?

ANN: Sure! I started, it started with a response that I wrote to my own assignment in one of my classes, and I posted it there. And it was, it became the introduction. So, I just really started thinking about my experiences in terms of the assignment was “Loss and Discovery.” And so, I wrote a little essay about it, and my students read it. And I shared it with some other people, and it just kind of, I just sort of kept working on it. And it was interesting for me. It was therapeutic for me to hear when you have memory loss, to try to put that back together and try to put your experiences into words and choose what images I wanted to display. So, it was a long process, but it was really, it, I sure am glad I did it. I feel like I benefitted from it, and I feel like I have a really unique combination of experiences to share with other people, being a congenital amputee and surviving traumatic brain injury. And so, that’s why I decided to put the book out, and….

TONI: Can you guys hear me?

ANN: Oh!

TONI: Yay!!!

CHERYL: Yes! Yes, we’ll come back to the book. Toni, yes!

TONI: OK. I’m so sorry.

CHERYL: No, no apologies.

TONI: OK. Yes! I am a person getting over frustration with Texas weather, and I am sitting in my vehicle. I am an African-American female with long dreadlocks and a red beret and big gold loop earrings. And yes, I will now tell you about myself. I am a two-time brain aneurysm survivor. I am also a music artist that has been featured on gold and platinum albums. I am honored to be the music, some, a piece of the music that is in Cheryl Green’s documentary, “Who Am I To Stop It.” And yeah, I am just really honored to be here. I do lots of music. I create. I’m an artist. I’m a naturopath. I speak. I’m just, just like they were saying in the documentary, it’s like, if you don’t do something, especially if you have a brain injury of some kind, you just, you feel like you have to do something. I think that’s what Brandon said, Brandon or the other young lady. You know, it’s just like you have to do something. And that’s, I feel like I have to be productive. So, hey, everybody! And I’m so sorry about my audio issues. [laughs]

CHERYL: No, we’re just glad that you’re here. And I appreciate you pushing so hard to mess with the technology. I think I would’ve given up. I’d be crying in a little puddle. Thank you.

TONI: [laughs] I was about to. Trust me. [laughs, then sighs]
Finding art therapeutic

CHERYL: Oh. Ann talked about writing the book and doing the art as, that it can be therapeutic. Do you find that with your music?

TONI: Yeah, I do. I find, like if I’m in a bad mood, or I’m feeling sad, writing, or not even just writing, but making up a melody in my head kind of is…it’s touching. It helps me. Yeah.

CHERYL: I think you got, you fell off the call during the part in the film where Dani says, “You know, if you’re having a bad day, just put on some music.”

TONI: Yeah!

CHERYL: And she hits the play button on her boombox, and your song starts playing!

TONI: Stop it! Really?!

CHERYL: So, I’ll, I got the email from you that you had lost power. I’m like, oh, but your song is playing right now.

TONI: Oh!!!

CHERYL: So, I’ll send you the film so can watch that and see.

TONI: Please. Yes!

[chill electronica music break]

CHERYL: But in other news…another question that I had for y’all is, what did you know about brain injuries before your own?

TONI: You wanna go first, Ann?

ANN: I didn’t know much about them. I had read references in a few of the things I’ve read, but I hadn’t really thought about it, to be honest. It wasn’t something I had ever really had experience with. I hadn’t known anyone who’d had traumatic brain injury. So, it wasn’t, yeah, I didn’t have any knowledge.

TONI: Yeah, I would have to say that that was my same thing. I didn’t even know what a brain aneurysm was until it happened to me. And then I started doing research, and yeah. But yeah, I was the exact same way. So, it was all new. It’s still new. I’m still learning stuff about my brain injury, like even when the lady—and I’m sorry I don’t remember her name—but the second lady, the artist, and she was just getting all emotional. And she was saying how the noises drove her, they aggravated her. I can see that ‘cause I get like that sometimes, like I can’t be overwhelmed with too many things, or it’s just I get really frustrated, you know?

CHERYL: Yes. Yes, I do. Anyone who knows me knows me knows I know that too well.

TONI: [laughs]

CHERYL: [laughs] So, y’all had to learn on the ground, as you went, still learning.

And I’m curious. This is a off script, off script, but I’m wondering, Toni, when you collaborate with other musicians—whether it’s Krip Hop Nation or anybody—are there accommodations that you have started to use since your strokes that you didn’t before?

TONI: No. I think the best thing that I did— I’m sorry. My lights just went out in my car.

CHERYL: [chuckles]

TONI: The best thing that I did is I started a…my own studio. And so, that way, I can really work on my own, and I have a producer that I’ll send it to, to mix and master and everything. But that’s been the best for me, because sometimes, working with people like how I used to work with people, nah. It’s a little more difficult. I can’t, I feel like I can’t even create my, I mean, I can’t express myself creatively around a bunch of people. I have to kind of be enclosed. Yeah.

CHERYL: Like in your car, alone. Though that was not your choice. [laughs] Ann, what about you? Because I mean, you were already a professor before your brain injury. You’d already been writing and publishing. Do you have to do accommodations to teach and write and all that and paint?

ANN: Well, my position now doesn’t require me to do research, but I still enjoy doing it. I wrote a book about “The Disabled Body In Contemporary Art” it was called. It was my first book. And I analyzed representations of disability in art and visual culture. And then, after my brain injury, I started thinking more about how my brain injury, what kind of impairments—physically and cognitively—it effect-, how it impacted me. And also, to tell it— I forgot. What was I talking about? [laughs]

CHERYL: Oh, I was just asking—

ANN: About a change. I identify a little bit with what was her name, the artist, and her 1,000 works ‘cause I have like stacks of paintings in my painting studio, in the closet! [laughs] And I sort of I have them all over my house, but…that too is an outlet for me, and it’s also…a way for me to think about my, to use some of my previous schooling and education, thinking about my experiences with traumatic brain injury and how that’s, I use some of that education trying to explain to other people what brain injury was like for me.

CHERYL: That is— I love that last point too because like both y’all said, you didn’t know about brain injury before you experienced you own. So, we do have to keep explaining it to people. And like you were just saying, Ann, what it’s like for you. It’s so different from everybody, for— It’s so different for everybody, their experience, and yet, both of y’all related to Kris in the movie and to different points that the different people said. I always find that interesting.

ANN: I really was attracted, or just, I felt really compelled by Dani. I just really, I love her spirit, and I loved that she, you know, her family was not totally supportive of her. And they were, but then her mother telling her that what they went through was worst just kinda broke my heart when I saw that. And I just really admired her spirit, her pursuit of her own form of expression, and I thought her poetry and rap music, or hip hop music, was amazing, and not in spite of her traumatic brain injury, but through it.

CHERYL: [laughs] Yes. Yes!

ANN: When she articulates her experiences in her own language really impressed me.

CHERYL: Aw, that’s beautiful. Thank you.

[chill electronica music break]

THOMAS: Can I just interrupt with a question from the chat?

CHERYL: Um…yes.

THOMAS: Is that OK? It says, “A question for both Ann and Toni: What would you want people to know about your injury if they knew nothing about traumatic brain injuries?”

CHERYL: Oh, she can’t see me on the phone. You’re muted, Toni. Yes, again, but we all do it. It’s OK.

TONI: OK. Can you hear me? All right! [laughs] I wanna say like the young man in the beginning, Brandon, and the lady, they made a great point. I think it was Brandon, though, that was just like, yeah, you may think I’m crazy or whatever. And then the second lady was just saying like, you know, people think just because I’m walking around, I’m normal, but there’s so much that goes on up here. And so, like how regular or abled-thinking people can just come off with a thought right then and there. Or it might be accurate, and it might not. That’s not the way with me. Sometimes I might go over the loop with emotions, or I might, you know. I just may be over the top, and it’s so frustrating when people tell you, “You need to control that.” You know? So, I would say that: Be patient with people who’ve had brain injuries because you really don’t know how much we have to re-channel just to get a thought out. Yeah.

ANN: I don’t know if there’s one thing I would say if I had to pick one thing I would want people to know about traumatic brain injury. I guess just the fact that the film shows this: the variability of what constitutes brain injury. The kind of injuries and the kinds of effects it has on the brain is so individualized.

TONI: Right.

ANN: And so, it’s hard to say anything about people with brain injury are because we’re so diverse. And that’s kind of related to what I’ve been writing about with disability. It’s hard to say disabled people are, because people with disabilities are so diverse, and they come from all kinds of backgrounds and have all kinds of experiences. And…seeing Dani, for example, my background and hers are very different. I mean, I grew up in an educated environment, and I had, I was middle class. I had resources, and I’m very grateful for that. But I identified with some of her emotions, some of her talking about and what Toni said: Sometimes you just, I have meltdowns. I do, you know. I just, I try to keep them private, [laughs] but it happens. And you get, you get overwhelmed. I don’t get sensory overload except, well, I get mental sensory overload. I get, I feel like I have just so many things to do, I can’t, I can’t see my way out of them. I can’t see my way out of it. And then, I’ll just rush. I’ll get everything done in a couple hours, and then I’ll sit there and say, “Well, what should I do now?” [laughs]

TONI: Hmm!

ANN: What should I do now?

TONI: Right.

ANN: And I’ve always been very ambitious, and I…you know, I don’t think I had no anxiety before the brain injury, but it is intensified. And sometimes, I just have to take a break and separate myself from something and just go back to it when I’m more in the right state of mind.

CHERYL: Oh, y’all are just, you’re just making my heart soar. And the stuff that you say— Oh! The cat is coming. This is a Zoom thing, right? This is what we do now, is we show cat. So, I’m showing cat. This is RouRou.

TONI: [chuckles]

CHERYL: He’s a long-hair black and seal tabby. Yes, black cats are tabby. He’s black, and red is his stripes. Well, now I’ve lost my train of thought, which I should’ve anticipated. But I really relate personally to what both of you are saying about your experiences. And Toni, you were talking—these are not the words you used—but it was something about sometimes you can’t win. If you look too “normal” or too able-bodied, nobody’s gonna believe that you need extra time, or you need that restated. I get it all the time. I tell people I need help, and they go, “No, you don’t.” I say, “Will you write that email again to me but in shorter sentence?” “No.” Like, “But I don’t know what your email says. The sentences are too long.” Sometimes I have to rewrite people’s emails to me so that I can read them because they don’t believe me that my reading was affected by brain injury.

TONI: Wow.

CHERYL: And on the flip side, wait. I lost. What’s the flip side of that? [laughs] Is that…. It’s what you said, Toni. I just can’t put the words back in my head.

TONI: You know what? You are dealing with brain injury people online! You asked the question. I hope through all of this, you have gotten your answer.

TONI and ANN: [laugh]

THOMAS: We have gotten the answer. I also— [chuckles]

TONI: We just gave you a whole picture of what it really is.

[chill electronica music break]

THOMAS: I just wanna call your attention to the comment that Betsy Neuville made in the chat just because you might wanna read it. It might make you make a comment; it might not. But you can carry on with your discussion and—

CHERYL: [despondent voice] Oh, it’s a long one. [laughs]

THOMAS: It’s a long one! It’s a long one. It is.

CHERYL: You know, I have to say. I mean, I’m being silly, and I really wanna read that comment. But chat is really hard for me on Zoom. The font is very small, and I find, especially if a paragraph doesn’t have a lot of blank lines between it, I will, my first response is to freak out. And then I have to chill out and then try to read it sentence by sentence. So—

THOMAS: Don’t read it then. [laughs]

CHERYL: The chat downloads after a call is done, and I give you my word, Betsy, that I will read it later. But it is a little overloading! [laughing] I’m so sorry. But—

ANN: Where is, where is it?

CHERYL: It’s the most recent in the chat.

THOMAS: Oh, OK. I’m gonna read it to you.

CHERYL: Oh, thank you. We’ll have a narrator.

TONI: Thank you. Yes.

THOMAS: It says, “Just thank you for this film, Cheryl, and all. I’m so moved by universal human experiences of loss, loneliness, craving for better times, bewilderment of how we get the lives that we get. Everyone can identify with this in some way, but in the people’s lives we have met in this film, so many extra vulnerabilities, some real competency impairments (often invisible), and so much judgment, stereotype, and even blame. Thank you for this opportunity to connect with these three people in helping us come a little closer to the liabilities of being human. A pretty excellent ending seeing Dani let her light shine.”

CHERYL: Well, thank you! And thank you for the team effort of one person writing it and another reading it. I appreciate that so much. And thank you for those words. And I also wanna say, I get different responses to the film. Some people say, “It’s the human condition,” and they leave it at that. And I think, yes, but it’s not. It’s about brain injury. [laughs]

TONI: Right.

CHERYL: But it’s also not just about brain injury. It’s about humans. And so, I really appreciate how you summed that up, Betsy. Thank you. I have a question for Toni. It looks like the sun has gone down in Texas, and you are sitting in your car in the dark, and it’s in the 20s.

TONI: I am.

CHERYL: Thank you. Goodness. This kinda goes back to what you were saying in your last answer that the feeling is in me, but I cannot come up with the words. And now the cat is on the prowl.

ANN and CHERYL: [laugh]

CHERYL: Just thinking about this idea of oh, you don’t look disabled, or you don’t have these impairments, or you have too many impairments, and just people not understanding. You titled one of your albums “Crippled Pretty.” And I just love how forthright that is, and I just, I suppose years ago, I could’ve just emailed you and asked. But now we’re here, and so I’d like to know why you named it that and what that means to you.

TONI: Yeah. And I wrote that album like soon after I got out of the hospital with the second brain aneurysm and the first stroke. And so, of course, I still walked with a limp and all of these things. And I was so insecure and felt unattractive to men because I had this different change in my body. But the more that I had to grow and love myself, I also learned that a lot of what we think beauty is, is a perception of confused perfection. And so, you know, even on the song, I’m like, this whole world is crippled pretty because you have people who are getting face lifts and implants and all of these things to fit in that concept of what they believe is beauty, when the reality is beauty is the illusion. It’s actually something that has to come within, from within. And it’s not that I don’t still go through that challenge of feeling beautiful, feeling attractive because of the concept of what the majority of the world thinks of perfection. And so, yeah, that’s why I came up with “crippled pretty,” ‘cause I am pretty, and you may fit me in that category of “crippled,” and I am just me, you know? But our world is crippled pretty. Yeah.

CHERYL: Oh, thank you. Ann, do you wanna weigh in on that? ‘Cause you talked before about how you paint your disabled body. We saw some of those paintings in the slide show at the beginning.

ANN: Yeah. I just, you know, I have a unique, pretty unique experience having traumatic brain injury because I was born disabled. And even though I have lost a lot of memory, my body kind of, like I didn’t, I had been through therapy before, and I had been stared at before. I had been condescended to before. And you know, that’s not, that’s…it used to happen more when I was little ‘cause I think people are a little bit more conscious of that now. But I was used to people asking me inappropriate questions, and so I didn’t, I would get stares when I didn’t have— Before my brain reconstruction, I had to wear a really institutional-looking helmet because I had a chunk missing.

TONI: Right.

ANN: There was a newspaper article saying that they removed what was the size of a grapefruit from my skull. And I was just, what?! Just looking through and reading back all through this stuff that I don’t remember is really horrifying in some ways. But you know, kind of telling it myself and talking about it and making artwork about it, writing about it makes it, you know, makes me more, makes me feel more in control of it. Makes me feel more that I have, I have the ability to mediate it in certain ways and show it to other people in certain ways that are…that reflect my feelings about it, I guess.

CHERYL: Ah! That’s beautiful. Toni, do you also…have you encountered other people trying to tell your story, and then you need to take your power back and tell it yourself, kinda like Ann was saying, reading about herself in the newspaper?

TONI: Yeah, I’ve kinda been through that a lot. But that comes with what I do too, you know? And so, when people introduce me, sometimes I don’t like the concept of “victim,” so I will correct them. I’m not a victim; I’m a survivor. And so, that is what you always need to say. But you know, I’ve had to be corrected sometimes, so I get that ignorance is just not knowing. And so, I find that as whenever somebody does try and describe and it doesn’t fit what I think or what I know about myself, then it’s my chance to teach, so. [laughs] Yeah.
Toni’s writing

CHERYL: And you’ve written books too, so I know that the teaching—and you do a lotta speaking—the teaching is super important to you. Do you wanna talk about any of your books?

TONI: Well, my first book I wrote is called “Chemical Suicide: Death By Association,” and I wrote that one after I had my second brain aneurysm, and the doctors told me to stop putting chemicals in my hair. So, when I researched why, I found out about lotions, deodorant, toothpaste, pretty much everything that we use and how it slowly contributes to disease. And especially African-American women, we have, at that time, we were so set on straightening our hair because of the concept of just blending in. And so, you know, it was a message to African-American women as well to just understand look, you don’t have to straighten your hair. And the more you don’t try and fit in these boxes, the more you can grow to love yourself. Yeah. And so, that’s my first one. And then my second one is on men’s health. And it’s not just men’s health, but it’s from a holistic perspective. And it talks about diseases on different issues and what herbs help those diseases.

CHERYL: Yeah. The thing that always gets me when you talk about the book “Chemical Suicide” is that, that little bit you just said is the perfect illustration of the intersection of racism and ableism. You talked about oh, there’s a certain way to look perfect and beautiful, and if your body gets an impairment, you don’t fit in that.

TONI: Right.

CHERYL: And then the demands that we put on African-American women to have straight hair, why?

TONI: Exactly.

CHERYL: So it looks more like white people’s hair?

TONI: Exactly. Yeah.

CHERYL: So, I really appreciate when you describe it.

[chill electronica music break]

THOMAS: One question, Cheryl, is to you, because Toni and Ann both responded to their experience with traumatic brain injury. Folks are wondering about your experience and how it affects you.

CHERYL: [chuckling] Oh, well, I did not prepare for that! I’m looking at my notes here, [laughing] and that’s not on my notes!

THOMAS: I guess you’ll have to speak from your heart.

TONI: Exactly! That’s the best way to speak.

CHERYL: Right. OK. Then I just start talking about my cat. But um…I like the question because it’s, it is a proud thing for me to say that I come from the community, in some ways, about the people…. If anybody can figure out what that sentence was supposed to be. I made a film about the brain injury community, and I’m in the brain injury community. And that is a point of pride for me because there are films that get made. I don’t know if anybody here is a journalist or studied journalism. It’s called “parachute journalism” where somebody just sort of drops in, reports on those people there, and leaves. And there’s a lotta brain injury documentaries that are very parachuted. I’ve seen interviews with filmmakers who’ve said things—and kinda like Toni said: They’re not being mean—but ignorant statements like, “Well, before I made this film, I didn’t even know people who’d been in a coma could speak.” And it’s quoted, and I’m like, maybe, I mean, I know that you thought that, but why did you say that to the reporter? And why did the reporter think that that was a good thing to put in there? And clearly, this article is only for people outside the brain injury community. We don’t wanna hear that. We don’t wanna hear you talk about us that way. Oh, I’m speaking from the heart. Anyway!
So, I do, I do like people to know that I’m not totally outside the community that I filmed even though I have a lot of different experiences from the three people in the film. I was going down a different route, a professional career, and I had to stop working. I couldn’t work. And in that time off, I got re-engaged with the disability arts scene in Portland. I had been one of their one non-disabled dancers for a while, and then I got re-engaged with them. And they were the only people who truly accepted me in my weird state walking with a cane, interrupting people, cussing constantly. I’m sure Toni and Ann can’t relate.

TONI: [laughs]

CHERYL: But this group of disabled people, all different disabilities, they just accepted me, even the ones I knew before and had seen how much I’d changed. And that just, I was like, nope, I’m gonna stick with the arts. I’m not going down this other field. And so, my professional life went that direction, and for me, it became about learning about disability culture and disability justice. Yes, disability rights are good, but I find that less interesting than disability culture and disability justice. And going down that route is how I met people like Ann and Toni. Check. Next question.
How aspirations have changed after brain injury

THOMAS: OK. So, there’s another, there’s a couple of questions in here, and I’ll try to capture them. But one is about your aspirations or how you judge things. And I take this question to be that you go along, and you do your work or your art or your writing. And you think and you judge and you aspire certain ways. And then you have a change in your brain that changes how you judge and aspire and think. Can you talk about that a little bit? It’s really difficult because someone would have to look inside your head [laughing] to really understand. But maybe you can give us some insight. [long pause]

CHERYL: I’m moderator, so you two lovely invited guests, yeah, you can answer first.

TONI: Oh. Yeah. Can you repeat the question?

ANN: [laughing] I was gonna say the same thing!

THOMAS: Sure. Let me shorten it up.

TONI and ANN: [laughing]

THOMAS: Let me shorten it up. I’ll shorten it up. [laughs] You do your art and you do your living in a particular way, and then you have a brain injury. And you do your art and you do your living in another way. Can you characterize that experience in some way for us?

CHERYL: I mean, you just saw it! [laughs]

ANN: [laughs]

THOMAS: I’ll change it again if I have to.

CHERYL: But I, well, I mean, I can answer, but I would love for Toni and Ann to go before me, if you have an answer.

TONI: So, I would say, before—I hope this is answering—but before I had my brain aneurysms and stroke, I was a successful artist, and I was born in New York, raised in New Orleans, was on my own since I was 15 years old. So, what I talked about in my music was more about the environment that I grew up in, which was the streets, the hood. Grew up around dope dealers and people on dope. And so, that’s what I rapped about, and that’s the stuff that got me signed. However, when I had my second aneurysm and first stroke, it literally changed me from the inside out. I almost transitioned. And so, in that process of going back in myself and learning to love myself, my art had to come from a different perspective because I was no longer the same person. And I think if anything changed, it was because I had to change from within. And now, as far as the brain injury and the issues that I have in my brain, yeah. The way I create is a little bit different. I paint also. I do it. I’m not as good as Ann. I will never, I don’t think I will be that good. But I paint to get out of my head. I create to get out of my head, out of my overthinking stuff. Because if anything has changed, I overthink because I feel like I need to. I hope that helps. [chuckles]

THOMAS: Thanks.

ANN: Yeah. I definitely overthink things. I mean, I was working on writing about representations of disabled bodies in art and thinking about my art work, although I don’t know. It’s hard to remember. OK. Lemme rephrase this. After my traumatic brain injury, I had art therapy, and that really helped me. I felt kind of I had been an artist before, and I was an art historian. And I thought, OK, well, this is an area in which I have some confidence in myself, that I know something about art. And that made it be easier for me to, I don’t know, the purpose of art therapy is kinda to access a different part of the brain and to…to…kind of put— Well, I’m not explaining this very well. I started doing a lot more collage because I write about it in my memoir, how I think sometimes my memory is like a collage because I have, I have flashbacks of certain things and images from other places. And I can’t always put things into a context. I’ll get like memories of something in my head, and I’ll have to like think about it. I’ll get flashes of something in my head, and it’ll be like, where’d that come from?

TONI: Right.

ANN: And you know, I’ll have to sit with it for a few days…. I write more about traumatic brain injury as a disability. I’ve kind of incorporated that into some of my work in Disability Studies. And I also think I have done more self-portraiture since my traumatic brain injury.

TONI: Hmm!

ANN: As I was working with art therapy and started thinking about how my art could be more therapeutic or just could display some of the things that I argued for when I was writing about other disabled artists’ work. And how I could use art to express traumatic brain injury, because also, traumatic brain injury, a common side effect is aphasia, being able to have trouble finding the words. And using imagery instead was something that I really responded to, and that really, I started thinking more about my own work just as more therapeutic, and what could be to myself and for others.

CHERYL: Oh.

THOMAS: Cheryl, it’s your turn.

CHERYL: I’m just floored. Well, I’m gonna, I had something I was gonna say though, which is that…. [laughs] What was it? I mean, hopefully, this relates back to what y’all both were just saying. Ah, now I remember. I wanted to hold up your book during this event and show it to people.

ANN: Hmm!

CHERYL: But I gave— Oh, good. You’re going to.

ANN: I have it. I have all my books right here. [laughs]

CHERYL: Oh, good. ‘Cause I do want you to, I do want you to at least say the name.

ANN: I just wanna be able to look up stuff if I need to.

CHERYL: Right, right. But I wanna tell you— There it is.

ANN: Oh, where? All right. OK.

CHERYL: There we go, “Re-membering.”

ANN: There it is.

TONI: Wow!

CHERYL: And there’s that self-portrait. Thank you, Ann. So, it’s “Re-membering.”

TONI: I love that.

CHERYL: Isn’t it— And when you bent down, we could see more kitty paintings on the wall.

ANN: [laughs]

CHERYL: That orange one looks like a croissant. The reason I bring it up this way is to say that I was going to hold it up, but I gave your book away. I read it several times, and I gave, and I wanna tell you who I gave it to. This is a young adult who wants to go to art therapy school.

TONI: Mm.

CHERYL: And I thought, well, you need to read a book about art therapy written by a disabled person! And the second layer of why it was so important to me is that she is a COVID long-hauler, so she quote-unquote “recovered” from her COVID-19 infection and is having those kinds of symptoms that a lot of people with traumatic brain injuries or strokes complain of, which is foggy mind, disorganized, irritable, meltdowns, fatigue.

CHERYL NARRATING: [chill electronica plays through the narration] I’m breaking in here for a minute. This film screening and Q&A happened on February 17th. The reason this recording is coming out more than a month later is that I couldn’t get to transcribing it sooner because I was diagnosed with COVID-19 less than two weeks later. And hearing me list out those symptoms is weirding me out now. During the panel, I felt physically healthy (although my baseline healthy is always slightly unwell and in pain all the time), but less than two weeks later, I was in bed. For three weeks. I’m outrageously fortunate to have not needed hospitalization. But I’m stepping in here to second the experiences of the young woman I was talking about. Brain injury impairments prepare you for COVID-19 in that you already know what the virus’s soul-crushing fatigue and confusion feel like. You know what isolation feels like. You know what it feels like to wonder if there’s an end to the current situation, and if it does end, wondering what will it be like then. I’m able to work part-time again, but I’m still sitting here, more than a month later, flipping through my day planner and wondering what shape it will take moving forward. It’s surreal.

CHERYL: And I think that everything that the two of you put out there that helps people understand acquired brain injury and stroke and traumatic brain injury, that is gonna be invaluable moving forward as people…god forbid more people develop long-haul COVID symptoms or have, I mean, people have had strokes from the COVID-19 infection, too.

TONI: Right.

CHERYL: And so, they need to hear this. And it’s so great that you’re already getting your messages out, and it’s now this whole new group of people who also maybe didn’t know anything about disability or brain injury and now have all these symptoms. And so, it was especially meaningful for me to mail her in particular your book, Ann, and that’s why I no longer have your book, so. But and I don’t remember what the other, what the original question was!

THOMAS: It’s OK. It’s OK.

CHERYL: We’re not quite out of time, but we are getting close. And so, I wanna give each of you an opportunity to respond to this very important reflection. And that is, is that many of the people who are with us tonight are aspiring teachers, and they are going to meet children who have disabilities, traumatic brain injuries. And what advice do you have for those teachers?

TONI: Hmm. I definitely would say first, understand that everybody will never learn the same way. Like, for the life of me, I never was good at math. I tried. I had to take remedial courses in college. I was never good at math. But some people are great mathematicians. So, when you deal with people with disabilities, no matter what it is, I think the first thing to understand if you feel like it’s complicated or they are complicated, don’t look at them as a complication. Instead, try and figure out their learning language. What do they love to do? Find that out, and then present them with the thing that they love to do and learn in that aspect. But you know, a lot of teachers—‘cause it’s happened to me as well—but a lot of teachers will get so frustrated with children because they’re not learning how they teach. But maybe the teachers sometimes need to learn how to teach a different way. You don’t have to always follow the curriculum 100%. Just bend it a little bit so everybody can gain and not feel left out. That’s my, yeah.

THOMAS: Great advice. Ann, you know Cheryl’s gonna make you go next ‘cause she likes to go last. But we will make her go.

ANN: I would just say not to make assumptions about people based on their appearances or, you know, to, I think that people think of traumatic brain injury as like you die, or you’re permanently in a vegetative state. And people with traumatic brain injury don’t, you never overcome it, just like I never overcame my disability. But you learn to live with it.

TONI: Right.

ANN: And how those impairments can…make you see things from a new perspective. And…I don’t know. I mean, I think I just, as far as, I am no expert in children at all. [chuckles] So, I’m not sure what. But I would say, just don’t have, don’t make assumptions. And it is hard. I know that teaching is hard, especially in elementary programs because it’s gotten so standardized, and at least public schools have. They have to pass tests to get to the next grade, and not all, you know, people with traumatic brain injuries might have trouble with standardized tests. So, we have a lot of ways that we measure education and knowledge and other ways of doing things that doesn’t accommodate people who have different abilities or different kinds of impairments. And so, making education less standardized, I guess, which I realize is a huge undertaking and requires a lot of funding! [laughs] But that would be what I hope for.

CHERYL: Beautiful, both of y’all. And I would just add if you are wanting to learn about brain injury, listen to the music, read the blogs and the books and the articles, and listen to the podcasts, and consume media made by disabled people. And make sure they’re not all white people, all upper-class people, all people with one type of impairment. Go across the field as broadly as you can and gain as many different perspectives as you can. But prioritize stuff made by the people with the disabilities that are being talked about, not [laughing] the interviews with their parents and not the articles by the filmmakers.

CHERYL: And Dr. Neuville, you may need to do stuff to wrap up, but I wanna make sure that Toni and Ann tell people your websites and where they can find you and buy all your music and buy all your books and buy all your paintings. Go!

THOMAS: So, websites. Margee, if you’re listening and you have websites, put them in the chat, please. If not, we will, Toni just dropped off. I think it had something to do with Texas.

THOMAS and ANN: [chuckle]

THOMAS: We will send websites for Ann’s work and Toni’s work and your work, Cheryl, because people are—

TONI: I’m back, guys! Sorry.

THOMAS: All right! You’re back. That’s good! But where they heck are you?

ALL: [laughing]

THOMAS: That’s good, Toni, because there’s a personal message here for you, which I’ll read in a minute.

TONI: OK.

THOMAS: Yeah. So, anyway, we will send the websites for your book, I did put while we were talking, Ann, I put your book in the chat so that people had that. And here’s Toni again. You’re sideways, but we like you that way. It’s OK.

ALL: [laugh]

THOMAS: So, just a couple of closing things. One is, I wanna mention that someone noticed that there was some talk, either in the film or in the conversation here, about normal. And they just noticed that, and they wanted to have a discussion about well, how does that play here, and what is it? And we don’t have time to talk about that, but because there’s a whole lot of stuff written about how normal got created, and I suspect y’all would give us an hour of conversation on that. But they did notice that. [chuckles]
And Toni, somebody named Susan Pelzer wants to thank you for connecting tonight. And she is in San Antonio!

TONI: Ah!

THOMAS: So, going through the Texas freeze, and she hopes you’re warm enough in your car. And she appreciates listening to what you have to say, so.

CHERYL: Oh, I just have to jump in. Toni, that’s my mother writing to you.

TONI: Aw!!!

THOMAS: Oh!!! It’s mom!

CHERYL: It’s my mom.

THOMAS: [laughs] Hi, mom. Thanks!

TONI: That’s so sweet! Yes, thank you so much. Wow.

CHERYL: So sweet.

THOMAS: And I think that is all. I so appreciate, I so appreciate you folks being here. I feel like I wanna go and have a drink with you, but now we’re on Zoom!

ALL: [laugh]

THOMAS: But we really appreciate it. And the folks at Millersville will have access to your film for the next year. And so, we will be promoting that, and we’ll also email everybody who was here the websites for Toni and Ann and Cheryl.
Toni, you have 30 seconds for a last word, and I’ll say the same to Cheryl and Ann.

TONI: Well, I would say first of all, Millersville, everybody on this call, I just wanna thank all of you for having me. Anytime that I have an opportunity to talk about brain injury, disability, or anything that helps is so appreciated. So, just thank you for having me. And also, if you want to follow me on social media, you can go to TheRealToniHickman—not the fake Toni Hickman—but TheRealToniHickman on all social media. And that’s my tag.

CHERYL: My wrap up is just thank you. Thank you, everybody. Thank you for your participation. I’m completely blown away.

TONI: Yeah.

ANN: Yes, thank you.

THOMAS: Ann, 30 seconds. What do you got?

ANN: Oh! Thank you for having this event and giving us the chance to all get together and talk to each other and share our experiences. And I look forward to hearing feedback about what the audience thought.

TONI: Yes.

THOMAS: We’ll send you the chat. They’re putting things in there if you want. You wanna express some personal note to anyone here, you folks here, just quick, stick it in the chat ‘cause we will send them all the chats.

Cheryl, you get the last word.

CHERYL: Oh! That also is not in my notes. Everybody, check out “Rising Phoenix” on Netflix. You will hear Toni in the theme music. [laughs]

THOMAS: Oh, it was “Rising,” what is it?

CHERYL: “Phoenix Rising? Rising Phoenix.”

TONI: “Rising Phoenix. Rising Phoenix.”

CHERYL: “Rising Phoenix.”

TONI: It’s a film about the Paralympics, yes.

ANN: Good.

CHERYL: I would encourage folks if you had questions that didn’t get answered because again, I really almost never look at chat—it’s too overloading—my contact information is on there. I’m happy to talk about the film, to bring it to you, and just please follow these two phenomenal women and support their work. I’m so, I just, I’m outta words, y’all. [laughs]

TONI: And Cheryl, I look more, I look forward to seeing what’s next from you.

CHERYL: [laughs]

THOMAS: I do, too. I was just gonna say I suspect we haven’t seen the last of any of you.

TONI: No.

THOMAS: Yeah, you haven’t seen the last of us, so.

CHERYL: Right.

THOMAS: [chill electronica plays till the end] So, thank you so much, and have a good afternoon/evening. And for everybody that came, thank you for coming! And that concludes our evening. See you all later.

CHERYL: All right. Thanks.

TONI: Bye, guys!

ANN: Bye!

CHERYL: Stay warm, Toni! [laughs]

TONI: Yeah. Aw! I gotta go back to the cold house! OK?

CHERYL: [laughs] Take care. Bye!

TONI: Bye.

[upbeat theme music]

CHERYL: Every episode is transcribed. Links, guest info, and transcripts are all at WhoAmIToStopIt.com, my disability arts blog. I’m Cheryl, and…

TWO VOICES: this is Pigeonhole.

CHERYL: Pigeonhole: Don’t sit where society puts you.

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