Episode 60: Lawrence Carter-Long

Jill is joined by Lawrence Carter-Long on his "day off". Lawrence is the Communications Director for the Disability Rights Education and Defense Fund, artist, activist, and DisArt board member who makes sure to take time to listen when others speak.

Interview Date | May 29, 2020

JILL: Welcome to the DisTopia podcast, where we look at disability from the inside out. [peaceful music fades in] My name is Jill Vyn, and I’m the cohost of this podcast with my friend and colleague, Chris Smit. 

What you are listening to now is the first of two interrelated components of our My Dearest Friends project, both of which have been generously underwritten by the Ford Foundation. The My Dearest Friends podcast, which is produced by DisTopia, is a series of recorded conversations with disabled people about their individual experiences with the COVID-19 pandemic, and the personal, cultural, and political alterations it has triggered. These informal conversations give our guests the opportunity to share personal experiences of sheltering in place and to engage in conversations around deeper questions raised about the value of disabled people, the core values of the disability culture, as well as our hopes, fears, and strategies for living an authentic and pride-filled disabled life.

The second component of the My Dearest Friends project is created in partnership with disabled artist Oaklee Thiele, who is creating black and white illustrations that represent our collective response to our new and uncertain realities as a disabled community. Designed as an open invitation to the disabled community around the world, we invite all of you to participate. More information can be found on Instagram @MyDearestFriendsProject, Facebook, and on our website, DisArtNow.org.

As is true for many of you, our desire for this project is to share our experiences as a disabled community, to disrupt ableist beliefs, to celebrate a culture whose lived experience of disability necessitates flexibility and creativity, and to validate disabled voices and perspectives in the midst of the COVID-19 pandemic.

[peaceful music slowly fades into chill electronic music that plays through the next two sentences and fades out]

LAWRENCE: Hi, everybody, I’m Lawrence Carter-Long: artist, activist, curious person. Pleased to be here.

When I moved to California three years ago, I was lucky in that the second place I looked at online before I ever moved had this wonderful backyard that I share with three neighbors. I saw the picture. She emailed me the pictures, and I went, “Oh, I love that place. That’s gotta be it. That’s where I’ve gotta live.” So, I sent the deposit, did all that business, and never have I appreciated it more than these last two months. You know, I think it’s made a huge difference in terms of just what I call home, right? Where I position myself in the midst of all this. And it reminds me that there’s, I don’t know, sunshine and mosquitoes and trees and birds and just, you know, all kinds of beautiful, wonderful things that are not the pandemic. I’ve appreciated being able to spend a little more, a lot more, quality time out here while I’ve been trying to stay safely in place. I’m on the second floor. I’m sort of up above looking out upon what expanse I have. And I feel like I’m sort of up here with the birds a little bit, so.

JILL: That’s nice. That’s nice. Well, thank you so much for being available today.

LAWRENCE: I’m in a unique space right now. So, you know, this situation I find myself in now—and I think a lot of us do with COVID-19—and even this morning, in the morning this morning, I had scheduled the day off to take a little time, be with myself, be with my thoughts and be in a slightly more contemplative place for our conversation. Of course, what happens? What’s the line? Life is what happens to you while you’re busy making other plans. So, everything kicked off, right, in Minneapolis. And folks at my office were talking about we should issue a statement. We should sort of proclaim our solidarity with those folks who are most at risk or those harmed both by police violence and COVID-19: being people of color, being Black folks, African-Americans. And so, this morning, spent a lotta time drafting a statement which tried to, attempted to crystallize or summarize at least. I was looking for some clay to work with, and I was looking about a lot of talk online about neutrality and the appearance of neutrality. And how there are quotes by Elie Wiesel and Martin Luther King Jr. that talk about, you know, Martin Luther King Jr. talks about being right there with Dante in that those who profess neutrality in times of crisis have a unique place in hell, right? And they take the side of the oppressors. So, I’ve been thinking a lot of and feeling a lot today about what it means to be in solidarity.

I’ve been thinking about how important it is to not be silent at a time like now, right, where even when I take the day with the intention of quieting down and shutting my mouth, there are still things that need to be said and that it’s important to say them. And it’s important to kind of say them, even if you haven’t worked out all the nuances, you haven’t finessed all the details and you haven’t been able to smooth out all the rough edges. But it’s important to sort of proclaim where you are, I think, both to yourself, to the communities that you’re a part of, to those you’re not a part of, and even I think [chuckles] when it comes down to it, to history, right? Where do you wanna be? Where did you throw your support when solidarity was needed most and community was needed most? And it’s important to kind of know that and do that and consciously put yourself into that mix. So, the place that I find myself at today is not where I expected to be. And so, I don’t have it worked out.

My 9-5, 8-6, [chuckles] you know, however long the days go on life, the job that I do, the work that I do is around communications. And I consciously chose to work in communications because it was always such a mystery to me how other people tick and how things worked and how can we get better in how we screw up in sharing those things that matter. So, like many other folks, I reckon, I imagine that it’s an uncomfortable spot when that’s your skill set, that’s what’s on your résumé, that’s what people might know you for if they know you at all, but you haven’t got it worked out. The Is haven’t been crossed, and the Ts haven’t been dotted so perfectly. And that’s OK, too, right? And I think that’s the place many of us find ourselves in right now, even if what was before wasn’t ideal, wasn’t what we wanted, wasn’t what we would’ve chosen, that there were still things to fix, at least it was somewhat familiar. None of this right now is very familiar, right? So, it’s given me an opportunity to sort of attempt to lean in to that discomfort and lean in to that kind of groundlessness and say, “Uh, wow, what’s this about? What’s here?” And to try to just sit with it for a little while.

JILL: That’s not always easy to do.

LAWRENCE: No, and I think it’s increasingly, probably more and more difficult. One of the things that I’ve found as a result of COVID-19, and this even started two or three years ago, right after I moved from Washington, D.C. to California, is that my online life needed to be counterbalanced with things that didn’t involve social media or the Internet. And that I was needing, just for my own safety and sanity and development even, to take some time away and counterbalance all that heavy, intense, focus-driven stuff, purpose-driven stuff to simply be and sit and…feel. So, what has kind of happened, oddly enough, while some people have had to worry about their jobs or their livelihoods and they’ve had that disrupted, I’ve been busier than ever. I’m the Communications Director over the Disability Rights Education and Defense Fund out of Berkeley. Been around since 1979 doing litigation, legislation, education. We pivoted, almost all of us on staff, from the things that we were doing to focus on the dangers of COVID-19, not only in terms of catching coronavirus.

You know, people with disabilities, particularly communities of color within disability communities, are more at risk than the general population, but also at risk for having our healthcare rationed or taken away from us, at risk of being told you don’t stand as good a chance, according to our calculations here, of living as this next guy over here. So, sorry, but you’re not gonna get the ventilator today. And trying to bring into before all that we could as attorneys and experts in public policy, and communicators in my case, to push back against those notions, to not let them become the norm or acceptable in any way, shape, or form. So, any of that time where I might’ve said, OK, I’m gonna be on the computer, I’m gonna be working between these hours of the day, usually you get a Zoom call, a conference call. You get a break. You get time to write. You get time to think. You get time to read. I’ve been online now more than I’ve ever been in my life. Almost every meeting needs to occur via Zoom, right? And so, there hasn’t been that time that I was consciously craving and creating, carving out to even pause for a moment and stop and reflect and figure out what the heck it’s supposed to all mean and how I’m processing it and what I need to do within it. And I think that that, in some ways, maybe adds a little bit to the sense of groundlessness or instability. And that’s, but that’s OK, too, right? That’s OK, too. But it’s not what I’m accustomed to.

[mellow electronica music break]

JILL: So, then you feel this sense of urgency? Is there a weight within the work that you do, that responsibility?

LAWRENCE: Yeah, there’s certainly a weight and a responsibility. And we take those on. We make choices. We say, I’m gonna take this job. I’m gonna take on this project, right? But nobody could have anticipated exactly what we’re facing right now. I think there’s also some sense of, I don’t know. There’s something that happens sometimes or that happens at least with me, where, as one’s online community or Internet community for many people seems to be something that they count on, they rely on, that’s there for them, and that they’re there for other people, it hasn’t quite felt that way for me. I don’t know if it’s the sort of the climate, where we are kind of in the country or just the way of the world right now. I like a spirited debate and a discussion. I love to throw questions out there into the wind and see what comes back to me. And I don’t know that there’s that same kind of freedom, flexibility, and kind of freewheeling sense within online communities as there might’ve been 15 years ago.

I find myself being a little more circumspect and a little more cautious about the questions I ask or the responses I give. And it doesn’t seem to be as always as welcoming a place as it initially did. And so, I think it’s a convergence of those factors: the responsibility, the weight of the work, the things that we’re facing in the world, which is compounded by that and that sense of uncertainty. And then also just the sense of I don’t wanna…I don’t wanna feel like I have to perform. I don’t wanna feel like I have to be on all the time or like a monkey with the tambourines. [claps hands a few times] And so, rather than go through the motions, I simply step back from it and try to do other things. Some of those things have been fantastic. Some of those things have been nice.

And I’ve rediscovered or rekindled my love affair with New Orleans. I went to college outside of New Orleans in a little town called Hammond, Louisiana. State school: Southeastern Louisiana University. And it was the first time I’d ever been away from home, home being Indiana. And so, 700 miles away, right, into that whole different world that Louisiana was. And I’ve revisited it from time to time, gone back from time to time. But because of the safety-in-place situation, you know, for whatever reasons, I never got around to watching TV shows like Treme, and said, Oh! I’ve got the time now. Let me sit down. And there’s something that really speaks to me about a culture that embraces music. That you open your window [chuckles], and it could be a brass band marching down the street in a second line. It could be a jazz band. It could be a zydeco band. But there’s this cacophony of different sounds mingling and mixing in that city.

While I knew that in the back of my mind, I hadn’t danced with it in a while. So, it’s been good to revisit that. There’s a radio station there, WWOZ, that did a Jazz Festing in place where the Jazz Fest is a big deal to folks who live in New Orleans, bigger than Mardi Gras, I’d even say, which has become a little bit more for the tourists. But Jazz Fest is where the locals go, right? And you can see that jambalaya, that potpourri of just different sounds and different approaches. And that for the first time since its inception was shut down, or since Katrina. Even the year after Katrina, they came back, and they did the Jazz Fest. And so, to hear sorta the best performances in the decades that they’ve done that festival and to be able to kind of put myself in that place was sort of mmm a holistic rebirth in some ways, a way to reconnect with parts of myself that I hadn’t paid attention to in quite a while, and to see how they resonate with who I am today.

JILL: You mentioned the opening the window, and that’s really, that’s a visual image that comes to mind ‘cause we’ve been seeing people during the pandemic playing music openly and finding community there. I’m also just really curious of how did you get to where you are, so in your life? Both of those are big topics and how they mix.

LAWRENCE: Yeah. And they do mix. It’s a metaphor that works, and it works because it’s real. I had mentioned previously that I grew up in Indiana. And contrary to [chuckles] what someone might perceive in terms of what’s public-facing in the work that I do, which always tends to center around the work, I was really kind of a quiet kid. I was very comfortable sitting in my room drawing or being part of the choir, not the person with the solo. And it was a theater teacher, Jean Shutt, in high school—I’d taken a drama class—who said to me, “You need to audition for the play.” Well, I initially resisted. It was that resistance that kind of led me to go, well, if I’m resisting it, I’d better try it out. I better check it out. That led me to audition and to become part of the theater program there in high school. It gave me access to parts of myself that I didn’t know existed, that I was uncomfortable, maybe even a little bit afraid of exercising and of trying out. And it was somebody who saw something in me that I didn’t recognize that became the catalyst for me to go there and to try it.

What happened as a result of that was it opened up those windows, metaphorically speaking [chuckles] and realistically, that I never could’ve imagined otherwise. It was the letting that air in and being infused by it that gave me a glimpse, give me a sense that another way was possible. That the assumption for folks in Indiana where I grew up was that you’d get a good office job, if you were lucky. Or you’d work in the factory or the farm, and that was your lot in life. None of those things would’ve really worked for me very well. And what the arts have done throughout my life, going now on around 40 years—not quite 40 years, 35 years—they keep showing me new colors. They keep exposing me to different sounds and different instruments and different tones and timbres. You know, they just keep expanding the world that I think I know and compelling me to know more, do more, see more, think about things in different ways.

And I simply cannot, looking back, I cannot imagine how my life would’ve been without it. Because that kind of life that was imagined for me would’ve been a prison, and I never would’ve found myself, I think, or become who I am today without it. And so, I’m immensely, immensely, immensely grateful for that opportunity to have that sunlight shine on me and for me to see where it might go. Which is a parallel to kind of what we’re talking about now and what we’re thinking about now, right? You don’t know, but you put your neck out there anyway. You don’t know. It’s scary, but ya give it a shot. You roll the dice. And what the arts have done, the arts have given me kind of the building blocks to be able to do that. To be willing to go, yeah, this is scary. Yeah, I don’t know! But I’m gonna try it anyway, you know.

And that was harkened back to decades later, when Heidi Latsky saw me walking [chuckles] after I had done PR for she and Lisa Bufano with Five Open Mouths dance performance there in New York City. And she said, “I can’t move like you. I’d love to work with you.” And I thought she meant doing more PR. And I hemmed and hawed and said, “Well, I would really like to, but I’m really busy. I did this as a favor.” And she kind of [clicks tongue once], you know, bonked me and said, “No, no, no, no. As a dancer.” And because I couldn’t imagine how I would shut up and dance, similarly, I said, OK. Then I guess we have to do it. And so we did, right? And next thing I knew, I got a second career at the age of 40, where I met my wife—who eventually became my ex-wife—but toured the world with a show that was focused on movement and how different bodies move. Something even 17-year-old me in high school couldn’t have ever imagined.

[mellow electronica music break]

JILL: I love when people have stories about the people in their lives that saw something in them that was different than what they had imagined, and how important that is.

LAWRENCE: Even though we grew up impoverished— My mom was a single mother. She worked three jobs at one point. There were many, many times where, if had it not been for school breakfast programs or school lunch programs, I would not have eaten. And so, I know what the experience of poverty is like. But I didn’t have that compounded by stereotypes or prejudices or discrimination, assumptions about race, right? I came to learn or discover later in life that the fact that, even within all that, the fact that I’m white and that I could talk and would gave me an edge that not everybody has, right? I wasn’t able to initially to appreciate what that would mean in terms of the opportunities that I would have. But I’m not without making my mistakes either.

You know, a few years back, I co-authored a paper with David Perry on police violence and the effect of police violence and the disproportionate ways that that affects disabled people. And, of course, within the writing of that paper, we put a lot of attention on the disparity in how that affected disabled people of color specifically. But neither one of us are from those populations or from those communities. And we were safely, or what we thought was safely, ensconced kind of within our own bubbles when we wrote that report, our intentions. And you know what they say about intentions and where they lead us. But our intentions, the idea was to look— where I could contribute was to look at media coverage, because media’s what I know, of how incidences of violence against disabled people were covered in the media and how the media reported, if they reported on these incidences.

My intention was to try to contribute, try to create a document. You know, the world, the reporters that I deal with on a daily basis or the editors that I deal with on a daily basis don’t believe something is true unless you can smack them over the head with a report or a paper, right? Anecdotal evidence by those communities who are directly being harmed isn’t gonna matter unless somebody has put their seal of approval on it and given them something that’s been seen as valid enough to be published, right? And so, what we tried to do was create that document that people could smack them upside the head with and say, hey, this is real.

Where we failed was that we didn’t talk specifically, directly to those communities. We didn’t seek input from people who had been directly harmed. And so, when that paper came out, it was this rude awakening, this wakeup call that I had been inside that bubble. And that I had been privileged to not even imagine that I needed to do those things. And so, when there was a backlash, I had to then deal with the repercussions of that backlash, both within my own work, my reputation to some degree, and the shame and the regret that I had for the way that that went down. That was one of the most painful experiences of my life. Absolutely without a doubt. And I deserved every bit of it, you know. But I needed that to wake me up. It’s sad that I needed that to wake me up. I regret that I needed that to wake me up. But I don’t know that I would’ve gotten it otherwise. I don’t know that it would’ve sunk in quite the way that it did.

So, what that’s done since then, I hope, is forced me to consciously stop and say, where are my gaps? Not to blithely, in some kind of serendipitous way, stumble across it like a choreographer saying, “Hey, you should dance,” and then acting on that. But rather, to seek it out, to say with purpose and direction, “What don’t I know? What do I need to do? How can I do better? What’s my role here?” And sometimes my role is best served if I step back and shut up and give that microphone to somebody else than it is if I’m the one who’s carrying that message. That was really, really valuable, especially for somebody like me who has spent their entire life hopefully becoming a decent communicator, right? It’s like, wait a minute. I just figured out how to do this, and now you mean I have to step back? And considering, well, maybe the role is not being the mouthpiece. Maybe the role is helping others prepare to find ways to tell their stories and to give them the opportunity, provide the opportunity. If it lands in your lap, hand it over to somebody else. Just share it. ‘Cause sometimes I’m not the best guy. And that was invaluable. That has been, continues to be invaluable: being able to step back and recognize nah, this isn’t for me. You should talk to So-and-So. That can sometimes be a difficult place to be in, especially if you’ve invested your identity in being this way or that way. But it keeps one moving. It keeps one evolving.

JILL: Yeah. So, I can’t help think about how many people in communications and media are representing other people.

LAWRENCE: Mmhmm, right.

JILL: And whose stories are being told from which perspectives? So, you had this realization, you know, that—

LAWRENCE: Yeah, but I only had the realization after I got slapped upside the head with it.

JILL: Right. So, how many writers, news people, editors, everybody, people in the film industry, or where we’re all getting our communication and media have the lived experience and tell from the inside out? I think that makes sense.

LAWRENCE: Right. Well, and I think the other question is how many people get the opportunity to tell their stories? Because I sort of had something of a profile, the opportunities would come to me where they wouldn’t come to other people, right? And so, I think it’s important, one, to recognize that that’s the world that we live in, and that’s the reality. And to recognize if that’s happening with you. But I also think that it’s something that reporters and editors, journalists, producers, all of the above should ask themselves. You know, what are my assumptions about this story?

When I do my trainings on reporting on disability, I challenge reporters. I go through this little exercise where I show them some of the common dozen or so types of reporting that’s done on disability. They can be everything from a prom-posal. You know, where the football star asks the young woman with Down syndrome to go to the prom, right? And everybody oohs and ahs over it. But at the end of the day, the teachers are interviewed, the parents are interviewed, maybe the quarterback is interviewed. They never interview the person with Down syndrome. So, whether it’s intentional or not, what happens is they become props in their own stories. So, then what I do from there is to show a dozen or so examples of reporters or news outlets that did it differently. And I ask, what is a disability story? What is your beat? What do you cover?

And then, because I’ve got them all saved on the laptop, if it’s a story about the weather, I’ll show them how disabled people were at risk during the fires here in California and how they couldn’t safely leave their homes for whatever reasons, or the disparity that happened during something like Katrina. If it’s something about, let’s say, food or marketing, I can show them a story about the uproar that happened a few years back when some people were claiming, oh, we’re all becoming so lazy! Why are there, there are these pre-peeled oranges at Whole Foods? Well, for some people with dexterity or mobility impairments, that orange being peeled, it might make the difference between them getting their daily allowance of Vitamin C or not, right? And so, it’s making a conscious effort to find the disability stories and to figure out who you need to ask to find them in the world that we live in and the stories that are already being covered. That has to be a conscious effort. That has to be something you work toward, because it’s not gonna just land in your lap.

JILL: Right. But then you take it a step further. You have to tell the stories, but then you have to tell them in ways that are accessible to people.

LAWRENCE: Right, right. Which adds a whole other layer, right? So, when you start talking about things like audio description or captions or plain language, even, you get that pause, that moment of, oh, shit. Again, you can decide, right? How do we play this off, right? But if the goal is for the world to become more accessible, then I see it as part of my job to teach them how to do that. Now, I can hand them that information. I can point them in the right direction, but I can’t make them do it. Practically speaking, you have to employ the carrot and stick approach, right? When they do it right, you thank them. And when they get it wrong, you try to explain to them what went wrong and how it could be better. And if they don’t pay attention, you whack them with a stick. [chuckles] You know, both are necessary, but they shouldn’t be employed nilly-willy, you know. I think there always should be some strategy behind it and some careful thought as to which approach do you assume or imagine, based on experience, might work better in this particular instance, right?

And that’s where the skill comes in. That’s where working in media for 25 years makes a difference. Because you learn to read somebody. You learn to get a sense of, you know, you ask what’s their approach, what’s their angle on the story? Then you’re able to tell them, I can do this; I won’t do that. And maybe you can lead them in another direction. But the only way to learn how to do that is to do it, is to practice, is to push it. And you never quite know how that’s gonna fall out. You have to put some faith in your skill or your ability to do your job and make your best effort, connect them to the right people, and hope that it works out for the best. You do your homework, you provide them with the background that they need, but then it’s up to them. And then, of course, you know that if for whatever reasons, they still screw it up, well, you’ve got Twitter. You’ve gotta use all the tools in the toolkit.

JILL: [chuckles] You’ve got Twitter.

LAWRENCE: [laughs]

JILL: Yeah!

[mellow electronica music break]

JILL: We really want to encourage people who may be new to the disability community to find community as one extension of this podcast, or at least, that’s one of the things I like about this. Because there’s lots of people who are, you know, have experienced ableism all their lives, but never knew how to identify that, right?

LAWRENCE: Right, right. And were probably never encouraged, you know. I wasn’t encouraged. I mean, I identified as disabled from the get-go. That was pretty easy, though, because I was drafted to be a poster kid when I was five, right? So, right away, I knew that I was disabled. That’s why they put me on billboards. That’s why I was on TV, right? So, I was able, for a myriad of reasons, to make that part of my identity and to let it be a part, something that I was, that I took pride in and that I was proud of and that I never shied away from. But I didn’t understand until later in life, till I was 35, that there was a value in community, that there was an advocacy or an activist community out there that I even wanted or maybe even needed to be a part of. And part of what compels me to do this work, part of what really motivates me to do this work is that other people shouldn’t have to wait that long.

I really wonder how differently, just in the same way that discovering theater when I was 16 or 17, how differently my life would’ve been if I had discovered disability community around that time or maybe even earlier. You know, if when I was five years old, walking out there in front of the fundraisers and saying to them, “Thanks to you, it’s working. Thanks to you, I’m walking,” you know, if there’d been an older disabled person who was able to say to me, “Kid? Is walking the most important thing, you know? Is there more to it than that?” That’s what I was feeling. But because no one had said that to me, and I didn’t really have elders with disabilities that I could turn to, and nor was I encouraged, would I even have been encouraged to do that. I mean, this was the ‘70s. So, in the 1970s, right, the emphasis was be as normal as you can be. Pass, right? Pass. Well, I could pass pretty darn well. People wouldn’t know that I had cerebral palsy until I shut up and stood up. And then when I’d start to walk away, I’ve had people literally slap me in the arm and be like, “Why! Stop that. What are you doing? That’s not funny,” assuming, because they’d had a conversation with me beforehand, that I was mocking somebody or that I was making it up. And so, I had to then say to them, “No, this is me. This is how I walk.” And then you can see that whole moment of disorientation where whatever perceptions, assumptions, presumptions they had about Disabled people in their heads, I didn’t fit. So, they didn’t know what to do with me. So, I remember there was a couple of other disabled guys in high school. We avoided each other like the plague. You know, forget six feet in between! We were down the hall. You know, we wouldn’t even acknowledge each other’s existence, right? Because the ableism was so entrenched and so embedded, that everything we’ve been taught or encouraged to do was to not be disabled. So, we had to try to achieve that as best we could, which was, of course, and is, of course, impossible.

It wasn’t until later in life, 35 years old, post-ADA that I began to ask myself, wait a minute. Maybe there’s something I’m missing here. Maybe there’s something I could’ve learned before that I need to learn now. And it was a movie. That’s no surprise to me, looking back, that it was a movie that did that, you know. It was going to see Million Dollar Baby, which, of course, has a whole assisted suicide theme. I don’t wanna give away too many spoilers, but at the end of the film, everybody else, it seemed like everybody else in the audience applauded. Not me. I didn’t. And I remember thinking, why are they applauding? This was not a sporting event. Like what? What’s the thing? And I was listening to people, ‘cause I’m always trying to figure out what makes folks tick. To paraphrase, the conversations people were having walking out of the theater was, well, that’s sad, but it’s understandable. She was a quadriplegic after all. I wouldn’t wanna live that way, right? So, the assumption was, yeah, it was a sad thing, but it was what it was expected of that character to do. And I got mad. Because I said, oh, my gosh, that’s probably what a lot of these folks think about me.

And so, I then decided to dig a little deeper. And the deeper I dug, the more I tried to have conversations with people about it, the clearer the ableism became. The unwillingness of people that were near and dear to me to even go there and to consider that there might be a different way was astounding to me. And it was then that I completely stopped a career that I’d had for 17 years doing media and marketing within animal protection and said, no, I can’t sit on the sidelines anymore. I’ve gotta do disability. So, you know, the Say The Word campaign came out of that, right? I was working for the federal government at the time, the National Council on Disability, the independent federal agency the ADA came out of.

The Obama administration had done everything they could to make the State of the Union address accessible, right? They played around with fonts. They were gonna stream that on the web so that disabled people could participate. And I thought, well, maybe this’ll be an opportunity, given all the work that we’ve done to help the White House with this and people I knew in the White House to do that, that we’ll be mentioned. All right? We’ll be part of that group, one of those constituencies they reach out to. And the list went down, right? Talking about the LGBTQ community, he was talking about Latinos, and he was talking about seniors. And I’m like, here’s our chance. Here’s our chance. Didn’t happen. Didn’t happen. And it was a fit of frustration where I said, what is it gonna take for us to be recognized by those in power? How difficult is it? Is our resistance to it so great that we can’t even say “disabled” or “disability?” For God’s sakes, just #SayTheWord, right? And I sort of vomited this out, put it out on Twitter, and it wasn’t necessarily wholly the most original idea anybody ever came up with. But I captured a moment; it captured a moment. And what happened as a result of that is that other people started retweeting it, and they started using it.

And the next day, I wake up, and there’s somebody in Wales writing an article about it and an activist in Australia putting a blog post about, “I’m disabled. Just say the word,” right? And then within a couple of weeks, an NPR reporter reaches out to me and sends me an email and said, “I saw this statement you made on Facebook, and I’m wondering what that’s about.” And so, we had this whole conversation that NPR published. What that taught me, what that process of sort of working through that and trying to figure out, well, what was the nerve that it hit that went way beyond me and my little hissy fit at that moment in time was that life is too short for somebody else’s shame. And that what Disabled people had been taught to do or encouraged to do or were expected to do was to carry around those assumptions that the rest of the world has. And that people just weren’t having it anymore, right? They weren’t gonna do it.

And I think that if there’s one message or one thing that I’d want to leave with newly disabled folks or folks who similarly have yet to discover or seek out community, it’s that’s the most valuable thing that you can do. There are other people that have traveled this road, that’ve experienced the things that you have experienced. You are not alone. Disabled people are like jazz. We know how to move in and out of things and how to adapt to meet the moment. That’s a skill set that living with a disability affords you whether you want it or not, right? I don’t regret much, but I do regret that I didn’t have an opportunity or didn’t make an opportunity to learn from all that when I was younger. Because I think that would’ve made a huge difference back then, and it would’ve made a dramatic difference in the work that I do now. So, if there’s one thing that I would hope could happen here is that people recognize, realize, and embrace the fact that there is a community and that there are communities of disabled people, even disabled people who may have different situations than yours. And we owe it to ourselves and we owe it to them to seek those out and to learn what they have to teach us.

JILL: Yeah, I appreciate you sharing all of that.

LAWRENCE: I had attempted earlier in my 20s when I lived in New York City, to— This is real, too. I think this needs to be pointed out. This is real too, where I attempted to go to some Disabled In Action meetings. I had just had a surgery. And so, I was using a cast at that time and a wheelchair to get around. So, there I am, a 20-something-year-old kid, 25 I think, coming into this meeting. And I had people that were much older than me that were part of that group, established part of that group, say, “What? Did you just break your leg? Why are you here?” Questioning why I would even show up and why would I want to be a part of it. And like, where did I come from, was sort of the vibe that I got in and around the room. And for 10, more than 10 years, that kept me out of disability community, right? So, there’s not just, I think people also need to know, there’s not just one community. There are disability communities like with anything. And some are gonna click with you and some are not. And if one doesn’t work or two don’t work, keep going till you find somebody that does or find a group that does. It just turned out that that particular group at that particular time on that particular day wasn’t for me, or maybe I wasn’t for them. But it kept me away for longer than it should’ve and longer than it needed to. So, what I try to do from this point forward is to provide that opportunity for somebody else.

JILL: Yeah.

LAWRENCE: Invite them in and then see where it goes.

JILL: Yeah, it’s like finding a good counselor or a good teacher.

LAWRENCE: Yeah. Finding a good counselor, an auto mechanic, right? Sometimes—

JILL: Or a partner in life.

LAWRENCE: A partner in life. And sometimes things have worked for a while and then they don’t. And it’s just a matter of keeping that in mind and then continuing to use it in whatever way seems to feel right and whatever way makes sense.

JILL: Yeah, it’s a very helpful perspective. Anything else that’s top of mind?

LAWRENCE: Whoo! No, I think we covered a lotta ground. You know, I didn’t have a prepared speech coming in [chuckles], and I don’t have one now. I think the thing to do is if any of this clicks with anybody who’s listening, if any of it resonates, even if any of it doesn’t, reach out. Let me know, you know. Let’s talk. I’d love to hear more about where they’re at and what they think I ought to be doing. More than anything, those are the takeaways I’d like folks to have.

JILL: I have just this great appreciation for you’re just a curious person. You like to meet people where they’re at. You’re inclusive, and you’re an introspective and wanting to learn and grow. And to me, those are the most exciting people, who just keep wanting to take it all in and don’t think you have all the answers right now. And because you’re sharing this today doesn’t mean that things won’t change for you in a week.

LAWRENCE: Yeah. Yeah. Talk to me in a week! Talk to me in six months. I might have completely different answers, you know. And that’s, I think, as it should be. Not to get too political here, but we see what happens when people aren’t inquisitive or self-reflective or willing to make changes. We know how dangerous that can be, right? It’s exploding in front of our faces increasingly all the time. It’s going to take a conscious effort, I think, by all of us to counterbalance that. Be the change—what’s the adage?—be the change you wanna see in the world. Be the change you don’t see in the world. You know, make it your purpose in life, especially when it’s uncomfortable, especially when it’s difficult, especially when it hurts to say, OK, maybe not right now. I’m gonna go lick my wounds. But next Tuesday at 4:00, I’m gonna come back and look at this, and I’m gonna see how I feel about it. [mellow electronica music slowly fades in and plays through the next few sentences] More than ever, I think we all need to do that. And I hope that that’s something we can learn. And more than learn, it’s something that we can embrace going forward, myself included.

JILL: I love it. Lawrence, thank you so much.

LAWRENCE: Thank you.

JILL: Thanks for listening. Be well, keep your distance, send us your comments, questions, and your submissions for Oaklee Thiele to hello@DisArtNow.org. Please make sure to follow the My Dearest Friends project on Instagram, Facebook, and DisArtNow.org. And thanks again to the Ford Foundation for their support of this work and to cat enthusiast Cheryl Green for the transcription of this podcast episode.

Music: “Jetsam” by Podington Bear. (Source: FreeMusicArchive.org. Licensed under Attribution-NonCommercial 3.0 International License.)