Cerebral Palsy and Stuttering with New Disabled South

Transcript

Maya Chupkov:

   Welcome back to Proud Stutter. I'm your host, Maya Chupkov. Before we get into our conversation with, um, these two brilliant disability advocates, I'm going to give you a quick update on our crowdfunding campaign, which ended It's been like a week and a half now. So, um, yeah, I just wanted to update you all that we exceeded our fundraising goal.

We fundraised 25, 000, which is going to allow our production team to shoot a few more days of filming, which is incredible. Thank you all so much for all of you who donated and contributed and shared about the crowdfunding campaign. We are so excited. If you didn't get a chance to donate and would like to, we are still accepting donations because yes, we still don't have our full funding.

Um, but, um, you know, we, um, it's a process, so we're able to continue our production, but Yeah, if you want to donate to the film, you can do so at rockofhopefilm. com and yeah, just stay in the loop. You can keep listening to episodes. Um, usually, um, at the beginning of each episode, I'll do a quick update of what's, of what's going on in the proud stutter world and around the film.

Um, Another great way to stay in the loop is to sign up for Proud Stutter's newsletter. You can do that at Proudstutter. org, you can scroll down, you can sign up at the bottom of the website. So yeah, that's it for now, and I hope all of you enjoy this new episode of Proud Stutter.

I'm Maya Chubkov, and I'm a woman who stutters. Welcome to Proud Stutter, a show about stuttering and embracing verbal diversity in an effort to change how we talk about it one conversation at a time. Welcome back to Proud Stutter. I'm your host, Maya Chupkov. Today we are joined by two disability advocates. First, we have Dom Kelly. He is the co founder of New Disabled South and we have his twin brother, Sean Kelly, who is the communications director for New Disabled South. Welcome both to Proud Stutter.

So you both stutter. And I was wondering if you can talk about how you balance your stutter with your other identities, with your other disabilities.

Dom Kelly:

In my own life, I have had a stutter since probably since I started talking. Um, and I have always had a lot of insecurity.

Um, Uh, around stuttering. I think when I'm, I do a lot of public speaking and when I'm speaking in that kind of a setting, I feel like I'm more fluent than when I am talking, uh, in a meeting with a funder or I am one on one with somebody or especially if I'm like having a difficult conversation. Um, uh, And, you know, to me and my disability advocacy, I, you know, I have cerebral palsy, um, so does Sean.

And, um, I think that. You know, whether our stutter is a CP thing, um, I don't know. I mean, I know a lot of people with CP who have stutters, so I would guess it's probably somewhat related. Um, but in how I've talked about my disability as an identity, um, it's always been, um, I have CP, I have. PTSD, OCD, and a stutter.

Like that's, that's how I've talked about it as I've really come to understand my identity as a disabled person. Um, so it, you know, it's something that I is critical to my advocacy because I, I, and the advocacy that we do as an organization because we're across disability, um, We have a cross disability focus, and so we want our community to understand, um, that disability is a wide spectrum, that it looks different for everybody, and that stuttering is a disability.

Um, and I think that having that lens and being, um, truthful about that and, and also having the language to describe it as a disability is really critical to my advocacy and the work of our organization.

Sean Kelly:

For me, it's almost been In some ways, similar and in other ways, kind of opposite, like when I'm in a public speaking setting.

Especially if I'm reading from something, that is when my stutter is at its most tightened. Um, when it's more conversational, uh, generally speaking, when it's more conversational, um, it's probably, I'm a bit more fluent. Um, I think that like the so I could be at a restaurant reading off a menu and I will struggle.

Um, I could be reading a speech. Um, I have a, for some reason, the only situation where I've ever been in front of people and reading and didn't stutter was at our mother's funeral when I gave my eulogy. Um, I was completely. I was able to get through it completely, um, without, I think, hardly stuttering. I have memories of being in school and being asked to read, like, a passage and, um, just the complete, like, terror and anxiety that would, that would, like, enter my brain and my body.

I remember it vividly. Um, and then the other situations like being younger and, uh, I did theater and I remember, like, as an example, I was in like Lord of the Flies. Um, when I was 14 and when we were on book still reading from scripts, I, it was like every rehearsal, I couldn't get through anything. And then when I would memorize lines and I go and would actually be doing the scenes and after I would be off book and was committing it to memory, um, I could mostly fluidly.

Get through the dialogue. I, for example, we will, you know, we'll talk about media training and things like that. And, you know, we talk about who, who wants to go like if we, if we do TV interviews, who wants to be on camera on staff. And my gut reaction is always to say, Oh, not me. I can't do that. Um, and now being at NDS.

I'm sort of reframing that now and sort of going, well, wait, of course I can. And of course I can in any situation, but it's like, it's a, it's been a lifelong sort of like, um, kind of reframing for me to really like be able to accept and know that like, I can be in any scenario and stutter. Okay. And my wife tells me this all the time.

Maya:

So being part of an organization that's broadly advocating for, um, you know, for people with disabilities, like what kind of things come up, because I can imagine it can be really hard. To kind of, um, take all of these different experiences. Cause I even find this with stuttering, like people who stutter have so many different views on their stutter and experiences.

And I'm sure when you put in like, like, like the broader disability and how many different experiences, like, how do you begin to align and. Come up with like a, a framework that everyone in your organization can buy into. And, um, because I think the more we can get towards that, the more of a stronger movement we can build.

Dom:

Yeah. When, when I started, this is Dom, when I started New Disabled South, um, I feel like I should say who's speaking. Cause we have the same voice, um, because we are identical. Um, uh, When I started New Disabled South, I was really, um, I was adamant that we were building an organization that was based off of the Ten Principles of Disability Justice, um, and one of those is, um, is cross disability, um, solidarity.

And that means that we accept any and all disabled experiences, um, anybody who identifies on the spectrum of disability. Um, without gatekeeping, um, and equally, there is no, um, you know, we don't, we don't, uh, prefer folks with intellectual and developmental disabilities in our work to, you know, over folks with chronic illness, um, um, So I think the framework for us is this shared agreement, um, that we work equally for everyone, no matter, um, no matter your experience.

And so much of our, our work is base building. And that's like building a movement, right? Like building, like growing, growing, uh, our supporters. Um, and we also have to recognize that there are lots of people who qualify as disabled, um, who may not identify that way for whatever reason. Um, they may be folks who stutter, um, they may be folks who have cerebral palsy, um, who are visibly, physically disabled like Sean and, and myself, and maybe they don't identify with that word or they don't, identify in the community.

Our, our job and our responsibility is to make sure that A, we are fighting for those people no matter if they identify or not, and B, that we are talking to them about the issues that impact their day to day lives, um, as a way to, um, bring them into the community, whether they identify or not. And that community building is so important.

So we, um, we have a shared understanding of, uh, of like what that, uh, of how we work within. Um, a broader, like, base of people with disabilities, um, who may not, uh, be fully bought into a disability as an identity or as a culture, um, or as a label, um, and I think that helps us internally, um, that agreement on cross disability solidarity and that agreement of, um, you know, we're fighting for.

Our community, no matter what they believe or their experiences, it helps us to really ground ourselves in the work that needs to get done. When we're talking about base building, when we're talking about working for everyone kind of Regardless of what your disability is and, and if you identify as part of the community or not, there is that narrative change piece, which is shifting the lens on what it means to be disabled, going along with the principles of disability justice, we, we really want like folks to understand through the work that we do, through the ways that we're like, through the channels that we're communicating with people that.

Um, that it's that there's not just one definition of what it means to be disabled, that, you know, that we're a community that that can't be like kind of boxed into one thing or one assumption. And I think that, you know, I think those sorts of assumptions, um, kind of spill over into like how policy is written, it spills into spills over into like where kind of representation comes in in media and all that kind of stuff.

Maya:

Like, If so, if we can shift that, that lens, I think that kind of creates, it, it widens the, the movement as well. So I'm just dying to know how you started this amazing organization. Um, where did the idea stem from and why specifically did you choose to have this regional approach and like. Um, and like what region exactly is this situated in?

Dom:

Sure. So this is Dom. I had been organizing, um, in the South for a while in different, um, ways, mostly volunteer for a long time. Um, and then found myself working in politics and, um, started to see that A lot of the issues we had faced in, we were facing in Georgia, folks were facing in Alabama and Texas and Florida and Mississippi and across the South. Um, and in my work, discovered that there was virtually no, um, uh, like collaboration. People worked in silos. Um, and so I really started as a way to bring people together. People together to strategize and share resources and, um, work to solve some of the most pressing issues that we face as a community.

Um, and then it just kind of grew, the idea grew, um, from like, it's just going to be a coalition to, um, you know, policy advocacy, um, like a think tank, um, um, Things like that, the kind of things that we have now, um, that we're doing, uh, strategic communications, um, Uh, hub. And so, it really started to evolve and in conversations with friends in the space, I learned that, um, not only was there not a southern strategy, but there was no regional organization that existed in the U.S. And, um, Um, it felt critical to have that kind of a lens on this work. Um, so, yeah, it started with that idea, and then it evolved into me sharing it with, um, people I trusted. And at the time I was working for Stacey Abrams, who, um, founded Fair Fight and then ran for governor a couple of times. And so she, um, asked me to help found and launch her second gubernatorial campaign.

And by that point I had already, I had already, like, the idea for New Disabled South was already a thing. I had had a couple years of funding committed, so I built it part time throughout that campaign. And by the time, um, Stacey lost the election, a week to the day later, I announced New Disabled South.

And my co founder, um, Casey Amon Wilson, she, uh, worked on Stacey's campaign with me as HR director. And she, we bonded over our shared disability identity. And did a lot of work together to hire, um, disabled people. And, um, and so I sat her down early on and was like, this is what I want to do after the campaign, I've got some money to do it.

Um, but I don't, uh, You know, I don't know how, I don't know if it's going to be a thing that like lasts, but can I, like, if I have the money to hire you, can I hire you? Do you have plans after the campaign? And she said, no, hire me and let's build it together. So I made her a co founder and, um, chief operating officer and, um, and yeah, and that's, and just kind of took off. Um, so it was really just a, And she lives in, um, in, uh, in Florida. So there was like a need to, um, have, her experience in another state. And, um, so anyway, it really, um, it really became something that we both saw a need to do and a desire to build together. So this might be a really silly question, but you know, I've lived in California my whole life.

Maya:

I probably should know this, but can you help orient us a little bit about Like the region that you like that you advocate in Can you talk about like what is the South like what what states kind of come like what? States are included when you talk about the South.

Sean:

No. No it is I have to write it down or I said Sometimes like I'll always leave a state out So it's Alabama North Carolina, South Carolina, Georgia, Arkansas, um, Kentucky, uh, Tennessee, Texas, did I say Louisiana?

I didn't say Louisiana, I didn't say Mississippi, uh, Virginia, West Virginia, and then I'm missing two. What am I missing? Oh, Oklahoma. Oklahoma. Florida? Florida. I didn't say Florida. Yes. That's it. Yes, I got it. There is some debate, um, that was really good, Sean, and also the, the identical thing is weird because I predicted in my head every state he was going to say next, and those were not in alphabetical order.

Wow. It's weird. Here we go. Um, but, um, There is some debate around Virginia and West Virginia, there's some debate around Oklahoma, um, Texas even, uh, because it's kind of the Southwest, so, um, uh, we have people in D. C. who often ask us if we can include D. C. and Maryland, and, uh, they're below the Mason Dixon line, but they're not the South, um, so we really, I thought, I had to think.

About like culturally what is the South and that's kind of how we landed on those states. My co my director on my film that I'm making is in Florida, so I'll definitely be telling her about you guys. She's in Jacksonville, Florida And then we there's also another guy I can think of that's in Venice, Florida And yeah, so very cool And there's I just wanted to say like there's actually a rich um And important, um, I guess like, like, uh, significance to Atlanta and stuttering.

Um, Arthur Blank, who is one of the founders of Home Depot. And, um, uh, he's the, like, he's the not Trump supporter founder of Home Depot. Um, he, uh, he, important distinction. He also owns the Atlanta Falcons football team, but he, um, He is a stutterer, and he is a billionaire, um, he's a philanthropist, um, uh, national, international philanthropist, um, and he is the largest donor to stuttering research in the country, um, and he founded the Arthur M. Blank Center for Stuttering Education, which is in Atlanta, and I think there's Peace. Um, maybe some program in another state as well that he's funded. So, um, I think that's really interesting that there's like a, a rich, um, like a rich significance to, um, Atlanta and the South even, and what we know and how we're talking about stuttering today.

Maya:

Yeah. Thanks for that. Um, while you were talking, I was thinking about like building a movement cause that's really what I feel like. The stuttering community needs, like we need to be building a movement of people who stutter because we're still seeing a lot of the same tropes and narratives kind of being talked about over and over again.

And so for building a movement and, and maybe just for anyone that wants to build a movement, even if it's It's not around stuttering, but do you have any advice for folks who kind of want to take that step? I know New Disabled South, like you're building a movement in the South, like what advice would you give others who are trying to do that? a similar thing.

Dom:

I think a way, a place to start to build a movement is to, um, is to shift the, shift the, the narrative. People repress, people repress it. There's not a lot of pride in being a stutterer. Um, and part of the disability, the growth of the disability rights and justice movement is that a lot of the repression, like people aren't repressing the same way they used to because we see disabled pride.

So I think, um, the more we can say, actually, my stutter doesn't need to be fixed. Um, and, uh, we see more of us being open about it and getting on TV and stuttering openly and like things like that. I think that that helps us to open up, um, the doors to a movement and to base building. Um, but I think that that's been a barrier in the way.

Um, so that's what comes to mind. Just that resonated with me in his book. Um, and I've been thinking a lot about that. Yeah. Um, I, I can definitely speak to that. Um, when I was growing up, there was a heavy emphasis on speech therapy. There was a heavy emphasis on like fixing it. I remember even being told at some point, Oh, you'll grow out of it.

When you get to a certain age, like that was a thing that, and I don't even know where that came from, to be honest with you. And like, so I, and, and similarly with our CP, you know, there were a lot of similar, there's a lot of similar, you know, I don't blame my parents or anything, but it was just the reality I think of, you know, you know, growing up in the nineties and.

And things kind of being like looking different and they're probably less understanding of the things that we're talking about and especially probably parents and stuff. And, uh, there was even like, you know, when, when we got our orthotics off when we were like 10 years old and it was, it was like as if we were graduating.

Right. And, and the, the way that it was kind of told to us was like, Oh, you won't need these anymore. And, uh, which is absolutely in adulthood. Right. Can confirm is not the case. Um, and so growing up, there was a lot of like, absolutely, like there was a feeling of this needs to be fixed. And when I would stutter and while I was in speech therapy.

It would be like, what's going on? Why are you not? Why are you, you know, use your techniques. Like, I remember that being a thing a lot. And, uh, to be completely transparent with you, I think that's a lot of, like, for me, why there was a lot of, like, um, shame around it as a kid. Um, that I've really had to, like, process in therapy. Not speech therapy, like going, seeing a talk therapist and, and, you know, working through my things and, um, there was, there was a lot of like, so I think that like I myself even sort of siloed the way that I looked at my stutter. Didn't really see it as a disability in the same way that I saw my, my CP. I don't know.

Sean:

I just think that for me, there's been a lot of re reframing that's had to have to have happened in the last. Um, about just feeling okay with like having a stutter and not, and, you know, trying to loop, like, get rid of this mentality that I had growing up that like, I have to be cured of this, right? Like, it's, you know, I've, I, I still struggle with it.

Like, I, I just finished my first book. I'm writing my first book. Anticipating having to, like, record an audio book and, you know, the, the anxiety that, like, I get even brushing the subject in my head is something that I know. If I were to trace that back, that comes from years of having completely different lens on the way that I view my stutter, uh, than I do on my cp.

And I think that's not to say that like we don't have moments where we, even though we're pr like proud to stutter, that we. I mean, yesterday I was, I stutter when I say my daughter's name and it really kills me. Um, it really kills me. Um, and someone asked me my daughter's name and I was like, I can't, it's hard to say it now. Mahalia. I, and, and it's, and it, I, when it happens, I feel like I want to cry. I'm like, I can't even say my own daughter's name. Like I have days like that. I have days where my CP, my muscles are, are tight. And, and I'm like, God, I wish I didn't have CP. And this is what I do for a living. So, um, I also think it's part, also that's normal and normalizing all of it is really critical too.

Maya:

Yeah. Um, two things came up for me. Um, one is when I first started the podcast, um, I, that's when I started thinking about, oh, like maybe stuttering is, a disability because I never thought it was until I really started to think about it. And, and then I would start just like joining disability spaces and like just listening.

And then I would get, and then I would just be like, and then I'd feel the courage to be like, hi, I'm a person who stutters. Um, and, and not feeling like I belonged in the beginning. But then, um, I feel like the more I kind of, through my podcast, created that space for myself, and in a way, and I feel like now it's becoming, now I'm seeing like stuttering be a little more part of the, the broader disability community.

And I think that was reinforced when, um, disability rights, California, um, was part of our press conference. Um, when we did a stuttering awareness week in California with the speaker of the California assembly, who just happens to stutter too, and so. Having them be so supportive and supporting our gala in a huge way.

Like that just made me, that action just reinforced my. space in the disability rights movement overall. Um, so that was really now I'm like, yeah, so that's been a very empowering experience. So I wanted to share that. Um, and then just the other thing that came to mind is like, why do you like, it's so fascinating to think that like, like how you kind of think about. Your C C P um, and stuttering because. Um, I don't know. Yeah, like, why do you think that is that you feel one way about your CP and then why like, you know, the, the, the stuttering was this shameful thing? I'm sure like, I'm just curious, like, I don't know how to articulate that, but I'm just like, like, my thinking is maybe CP is more like normalized and understood where stuttering is more this like, misunderstood thing that people think they understand, but because they don't really understand, it causes a lot of harm, like, emotionally for people. Like, am I getting somewhere with that?

Dom:

I think that's spot on. I was just thinking about, um, a job that I had, that was the worst job I've ever had in my life. Um, and I was so anxious every day and my stutter was, Like, I was the least fluent I've ever been during the four months I had that job, and um, I, you know, I think I was afraid to, I would get in, I would be in meetings, and I would be asked to speak on something, and I was so nervous.

I could barely get two words in fluently and, um, I could sense the frustration. And I think that if it was a situation where we were taking a hike and I said, you know, hey, like, This hike's going to be hard for me. Um, like there would be an understanding because, Oh yeah, you've got a physical disability.

I could see it. I, you know, that's, that makes sense. Um, I don't think there is the same, not just the seeing it with a stutter, right, you could hear it, but I don't think it's viewed with the same. Um, understanding or even compassion that, um, that it is, I think, um, there's not, and sometimes it's as simple as like, if it's an employer, they don't want to get sued.

So of course they're not going to make you go on a hike because they might think they get sued. But they don't see the same thing when it comes to a stutter and needing an accommodation for that stutter in a workplace, right? So I think your point is like, is spot on. It's just a different, a different understanding of a disability like CP being normalized, um, and a stutter not being normalized in the same way.

Yeah. And I, uh, if I could speak a little bit to more to that, like, so this could probably take a whole another episode to like drill down to this, but so the two of us were in a band together for about 20 years. Um, and we, we toured all over the world and did a lot of cool stuff and it led us to the South.

And a lot of what we're doing now, um, and our experience, like my experiences just not for that portion of my life. Um, especially as a kid and a teenager, um, doing music and being in like a non disabled, like a largely non disabled space or like line of work, I guess. Um, and at least in the ways that we were doing it, uh, it was like, I can remember, uh, doing certain things where, like, my, it was almost like people wouldn't talk about us having CP, um, or they wouldn't acknowledge it because I don't know if they felt like they, It was inappropriate to, but when I would stutter, that's where those are the situations, like where, like somebody might make a comment or something like that, um, or somebody like might say something disparaging, but maybe they didn't, you know, maybe they didn't mean it that way.

I don't know. It probably, I can think of examples where like we were in this kind of those like music spaces or on tour with somebody and things would come up around stuttering, but not around CP. And I think that, I think it's because. it's just viewed differently for, or it was viewed differently for a lot of people, it's viewed differently.

And then I think I, maybe myself, like I would internalize that and, and the two would always remain kind of separate in my mind even. Um, so yeah, like that was a whole unique experience that we had where like, Sort of in the, in this like world where I think people were really trying to see us as equals because of our cp and not, and in, in the sense of like, not calling attention to it or because they, because they thought that that was like what was best or something like it.

I, I just remember always feeling like I would hear from people and they'd be like, oh, I didn't even know you had cp, even though. Like the way that I walk, it's quite obvious. Um, and then, but when I stuttered like the reaction or the way that people would. would respond to that. It was largely like a whole nother thing entirely. Um, so the way that like in those, in that environment, it was, they were both were treated quite different. I think that really impacted me through those years as well as I was kind of growing up and like getting older and just kind of seeing the world through this like kind of unique lens of like being in a band and stuff. Um, so it, yeah, it's been a, it's been an interesting journey in that, in that regard. And I think that like, Everybody's experiences are different, but that's, to me, that's why a lot of, a lot of what I think the combination of a lot of things that I've talked about it, like it's kind of why there was always this.

There's two different side of things. Um, and now, you know, it's a lot of like coming to terms with, yeah, this is, this is me. I'm, this is part of me. I'm proud of it. I embrace it. There's no curing it. There's no need to try to like track down some, you know, cure all for this. And it's, I, I am disabled in that I have cerebral palsy and I, and I have a stutter and like that, that in itself has been a long journey, um, to, to reconcile, but like being there feels really, really liberating. So yeah, I think it's, I think for me it came from a lot of different experiences, but like that, those years of like touring and stuff and being in that world really impacted that for me a lot in like drawing lines where there didn't need to be lines drawn. Um, so it's been, it's been interesting coming back from that. I'll say that.

Thanks for having us on. Thank you for having us.

Wow. What, what a great conversation. Like I, I just, I learned so much from both of you and I'm so like, I just feel so lucky to be able to share something so like personal with you both. Like just living with a stutter. Like you both are doing amazing work and I'm such a big fan of yours. So just thank you so much, um, for reaching out.

It's been so fun to be able to podcast with you both. And I definitely want to have you on again, but for now, thank you. And, um, yeah, thank you all for listening.