When Identities Collide: Owning Your Stuttering Story With Multiple Disabilities

Transcript

Maya Chupkov:

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 today. I am joined by Tiffany Yu our guest co-host Tiffany is host of Tiffany and you podcast we will be interviewing Our Guest for today's episode Steph Lebsack. Steff is a woman who stutters a speech language pathologist and has a brother who stutters. Welcome both of you to Proud stutter.

Tiffany Yu:

Hello.

Steff Lebsack:

Thank you so much like having us. Yeah.

Maya:

So Steph you have neurogenic stuttering which is a term. I've never heard of before. Can you talk about that? And also you're stuttering journey,

Steff:

I grew up as a sibling of somebody who stutters in my brother. My older brother Jasper is started to stutter around the age of six years old. I did not have a story or a journey with stuttering and all kill the age of 36 personally. I was my role was as a sibling and as an ally I am a person that lives with chronic lung disease and so with my journey with that I sometimes have episodes that are more severe than others where I will respiratory arrest and have to get put on a ventilator and that's happened five or six times now the past couple years and

Two years ago one of those episodes involved hypoxia to my brain. So like lack of oxygen to my brain and that caused me to have a traumatic brain injury. I woke up on a ventilator and legally blind. I woke up very cognitively different another aspect that I had besides like really severe debility from being in the hospital was I started to stutter. I'm kind of an anomaly because when you think about stuttering there's of course like child onset like my brother he started to stutter when he was a kid. So stuttering runs in our family somewhere, right and then there's also a couple of you know, a few other types of stuttering that are acquired types of stuttering one of those is psychogenic stuttering. That's what it's called. And when I tell my graduate students what psychogenic means because a lot of the medical community, here's the word psychogenic and they think it's all in your head. Not quite.

What the word psychogenic is basically it's the body's physical concomitants to trauma. So there's some kind of trauma in your life and people that I have that I get to serve clinically who come in with psychogenic stuttering typically say things like the stuttering started when my parents got divorced the stuttering started when I had this major life event, so their psychogenics stuttering and for my story, I had gone through quite a significant medical event.

So experts were probably say, okay did you start to stutter? Because it runs into your family and this traumatic event made it click on right? There's that question. There's the question of that I start to stutter because I had this major trauma like medical trauma or did I start to stutter because of a neurogenic stutter which is stuttering due to an anomaly in the brain so you can have a traumatic brain injury like lack of oxygen like I did you can have a hard hit to the head and start to stutter people with Parkinson's cons better a kind of a class of stuttering in itself my assumption would it be that I would fall under the neurogenic category because as I started to rehabilitate my brain over or outward stuttering characteristics and they were pretty prominent when I first started to stutter started to decrease my cognition started to improve my my vision didn't completely come back but a lot of it did and some of it didn't but has I started to rehab my brain my stuttering became less apparent I still stutter but you will only hear me stutter when I'm extremely tired. So that's kind of The Telltale love I stayed up all night doing something. Or you'll hear me stutter when I my brain is overstimulated like if I'm driving in a lot of traffic and downtown Denver where I live.

I will start to stutter if I try to talk to my spouse while I'm driving. For example, it's completely a brain a brain thing.

Maya:

Wow, it's still amazes me how many new things there are to learn about stuttering. Um and what you said the stuff about being tired and when you're tired, and you don't sleep and the stutter can come out more and be more consistent that totally is how I am whenever I don't get a good night's sleep. And let's say I'm running a meeting the next day. I definitely find myself stuttering more. After I don't get a lot of sleep, and yeah, it's just really comforting to know that it's more. Because of how my brain is wired, it's not my fault.

Steff:

Yeah, absolutely. I love that framing where you said, it's not my fault. I I should put that on my wall with like everything right? It's not my fault. And you know, this is what my body's doing and I'm just kind of along for the ride with my well, my body is doing mentally physically all the things.

Tifanny:

I think it was super fascinating to hear more about your journey and I'm curious if given that you had a brother who stutters if you know when you had your onset stuttering if you felt like oh like I already had a role model of what this what this potentially looks like and if that if that kind of helped you on your journey

Steff:

Oh it helps so much. I love that question so much. Thank you for asking. Um, so I you know in the stuttering world, I'm a speech language pathologist and and in this stuttering treatment world, we say there's over characteristics and cover characteristics and covert character. Index it's what we feel what people don't outwardly see like avoiding communication situations and avoiding right and the feelings and that thoughts even fall under that category of what we feel towards our stuttering.

And so when I experienced going silent, which I did experience going silent, I went through about two or three weeks where I just didn't talk to anybody. I used my phone to communicate and I was stuttering pretty prominently then I didn't go silent because of feelings of Shame and I'm so thankful for that because I grew up with somebody who stutters, right? So I was already okay with stuttering happening to me. I didn't mourn that it was happening to me. I'm more into my vision a lot that was really really hard to stomach. That was really frustrating. I did not grieve. Waking up stuttering at all because to me stuttering is okay, right like like Daniel Dillard Daniel Rossi's Book Center. He's cool, right like and and so like all the medical professionals. I had coming in my room they say well what's going on that's a lot of questions and I was very openly talking about what was happening and why and so I kind of sound like okay now now I get to tell more people about it and but I will tell you I had some experiences right off the bat that were really eye-opening for example within two or three days of when I started the stutter. One nurse who came in my room. I was in the ICU for quite a long time one person who nurse who came in my room said What are you doing with your talking? And I said it's it's called stuttering. She goes I know but you weren't doing that the last time I saw you you're Faking It.

So right away, yeah right away and somebody said you're faking it. That's not real. And within just a couple of days of my own stuttering experience. I realized oh my goodness. This is what people like my brother have gone through their entire life extremely eye-opening for me. It made me be that much better of a clinician for the people that I get to serve who stutter because I realized oh my goodness.

If that's how that made me feel imagine being a six or seven year old child who's extremely modeled moldable who doesn't have their self-confidence or their idea of self at all developed yet? And they're having the defend something. They don't really quite understand yet in their life and that just must be so difficult. And so having somebody accused me of faking it first and then having people interrupt me and like all of these things that started to happen. It made me realize this is just a glimpse of what my friends and family go through like just just an inkling because I just started with it. So it just gave me that much more empathy.

Maya:

That story is bringing up so many memories step things so much for for sharing that my stuttering experience is is it really fits into what you just said because there are some moments in my life where I'm stuttering a lot and then there's moments where I'm very covert and I I too have been accused of of faking my stutter or faking that I have a stutter or something and that is just something that even to this day, I feel self-conscious about when I'm talking about stuttering and I don't stutter while I'm talking about stuttering. I always have this thought in the back of my head like you know are people gonna think I'm not stuttering enough, you know what I mean? So being a stuttering Advocate and being covert is just a very and I think it's more challenging inside myself rather than like something that is external

Steff:

Yeah, yeah, that's a that's a really good way to put it. It's You know I even questioned. identity, you know, I'm really identity is so Paramount to me in the people that I It to serve clinically and in myself and in my children, I think personal identity and what developed that identity for a person and their Journey with that is so important to hold Paramount into honor right when we meet people and we talk to people I you don't I can identify as a person with lung disease because yeah, it's it's kind of hidden but I have this big story with it, right? It's a big part of my life and lung disease affects every single day. I have medications and treatments and I have to schedule, you know, and I work right so I have to schedule what time I get up because of lung disease. I have to schedule where I can go because of long disease because of things I could be exposed to like just tons of stuff. It's easy for me to lean on the I didn't see of and be comfortable to tell people I'm someone that lives with lung disease because anybody that knows me knows obviously that I live with long disease, but when it came to identifying as someone who's stutters, I really had to think about that because just like you said and you put it so well do I stutter enough for people to take me seriously and and but the reason why I decided to identify someone who stutters is because I still have a story with it. Right and that story is mine and that story is important. And so and it's really given me a beautiful opportunity to educate about neurogenics stuttering because that a lot of people don't know about that. My story is very different from my brother's story because I don't claim to know what it was like as a child to to have this but I can talk about it with how I've experienced it and that's that's worth something that has value in communication with other people. And so I decided okay, I'm gonna Embrace this I'm gonna talk about it. I'm going to and a lot of people in the stuttering community still call me an ally and I'm okay with that too. If they call me an ally and not a person who stutters. I'm like, I don't correct them usually because I'm like, you know, I don't blame them because I don't very obviously outwardly stutter, right and they knew me before I started to stutter. I almost sounded the the same so I don't get mad at that either. I'm like, okay. Well if they ever like hear me on a podcast or something and I talk about my stuttering and they'll know right? I'm not gonna correct them.

Maya:

Tiffany, I'm I'm curious about you and your journey in the disability space as you know, someone that has I did a disability. Can you talk about your journey and claiming that as part of your identity?

Tiffany:

Yeah. Sure. I mean I think stuff there's there's so many layers to unpack there. I think the first day just wanted to reiterate is this idea of like disability grief and so you had disability grief around blindness, but not necessarily disability grief around stuttering because it was modeled for you. Right but both of those were later on sets or you acquired both of those. And and I think that highlighting that Nuance in in the story is important because is in necessarily always being so loud and proud about your disabilities, but instead honoring that we can exist in the Nuance of having accepted or disabilities or struggling with them or celebrating them, you know, and and that's all part of our own narrative and so a little bit about my own journey. I guess I'm coming into this conversation as as an ally is I I acquired my disability at the age of nine my

My dad was driving a car and he lost control of it and I was a passenger. He ultimately ended up passing away. Unfortunately, I permanently paralyzed when my arms and shattered a couple bones in one of my legs and it's this interesting thing where for people who have my type of injury where it's it's called a brachial plexus injury, but the best way to explain it to people who don't know what the brachial plexus is, which are series of nerves the send signals from your brain to your arm is that just my arm is paralyzed and a lot of where this injury happens, you know, and so here I am learning about the different types of stuttering So within the brachial plexus Community you have what's called abstractic. I don't even know if I pronounce that correctly o t o b p i obstructed brachial plexus injury and then you have traumatic brachial plexus injury. So the odpi happens due to medical malpractice of pulling the arm out first during childbirth. So the child did not have a disability when they were coming out of the womb but during that whole process acquired their disability.

You know before they even fully fully came out and now I'll have to live with a lifelong injury and mine is known as TDPI traumatic brachial plexus injury, which is we acquired our injuries later in life. And I sit in this interesting space. I wanted to bring up those two different types of this injury because I acquired mine so young while a lot of people who acquire team BPI the traumatic brachial plexus injury get it because they are skydiving or a motorcycle accident or other voter vehicle accidents or snowboarding or skiing or something doing like something extreme like extreme force of the arm and I guess the other the other part of this journey that I wanted to share that relates to your journey staff is kind of the comorbidities that exist within the disability space like people.

You know you talked about People know about your lung disease, right but there are so many byproducts of of that and and other disabilities within your journey as well. And I think that the more I I come back to the theme of like Nuance the more that we can come back to wrapping our heads around the fact that people can have multiple disabilities. They're not just this one thing right and it's kind of centered on this idea of identity but as a result of of the car accident and not feeling like I had safe spaces to talk about it to heal. I ended up developing post-traumatic stress just disorder or PTSD that I ended up getting diagnosed with about three years ago, but I think for me this whole journey of identity, you know, I think I spend so I'm the daughter of Asian immigrants and I share this part of the story because within my family shame is viewed in a family unit and the car accident with Cena shameful to the entire family because multiple family members were involved and the fact that I acquired a disability and my dad pass were also seen as shameful because it meant, you know, something was wrong for the family for this, you know.

This horrible thing to happen. So it was modeled for me that I shouldn't tell anyone about the accident or my arm my were long saves all the time. And I also told everyone my dad was away on a trip.

And I bring that up because I spent I've been now disabled for 25 years and I feel like I spent the first 12 of that sitting in spaces of Shame not feeling like I can tell anyone about what had happened and just trying to hide I call it like internalized shame and I've spent the last 13 years of that working on unlearning that and so that's why I love this show Proud stutter and the fact that Maya is building this community of connecting with all of these people who have different stuttering stories and acknowledge and accept that this is this is a part if they choose to have how they want to identify.

Steff:

Oh my gosh, so can you come talk to my grad students? And can you compact it? I have just thinking oh my gosh. You're sorry. It's just Wow, thank you for sharing all that with us.

Maya:

Wow, Tiffany. I'm I'm learning so much about you and you know for for caught in the text, I I met Tiffany very recently at a podcast boot camp where we were kind of all selected to kind of work on a branded podcast and and that's yeah, so that's where Tiffany and I met and I knew a little bit about her and I knew she was this huge disability Advocate but but hearing it your story it just really like it's no wonder you're a role model for for so many and it's such a powerful story. And then for Steph and I we just recently met last year at a virtual event called stutterfest and I was introduced to Steph as a woman who stutters and as a woman that has all these other interested sectionalities and and I heard a little bit about her her story with her lung disease Journey, so I guess that's just to say that I'm I'm really learning just so much and it just feels so powerful to be able to share space with with both of you amazing women,

Maya:

You know for people who near me before I stuttered and then now and and I will do want to make a comment that for people who are allies you are so important and so I am not more advantaged I would say because I stutter now compared to an ally who is really helpful in the community Tiffany. You said you're an ally in this space and I love how you said that. I've also had people say I'm just an ally and I said can we reframe that? Because you're just a really big deal to our community because you're an ally and can I say, thanks and can you say I'm an ally can you resay that instead of saying just an ally? Okay. Thanks. So like it does not minimize the work people are doing in the Allies that we have because we need our allies so pertinently in this community. I can't shout that enough. But the other thing is that I just love like Tiffany kind of going to your story. You've gone through a lot that you're experience. And again you reminded me so much of myself, too. I think that's like we're finding that out in this conversation because I do have multiple disabilities because of one entity. I also have PTSD from having multiple medical traumas and other traumas in my life. I also have anxiety disorder from having lung disease. I was diagnosed with depression not long with after because it was starting to affect my daily living and that was really hard to handle. It's it's hard and I have a lot of doctors appointments and when I go to the doctor the people at the front always say something to the long to the lines of like, oh you need an hour long appointment. because you have so many issues. So it's really taught me language sensitivity within medical experiences and within like daily life experiences. So that's doctor saying okay, where do we start? Like, thanks for making me feel awesome like, you know, but then also trying to learn how to embrace the identity the the multiple identities involved with with these multiple entities in your life, you know, like like I mentioned and like you mentioned like stuttering was okay, right, but the the visual impairment stuff really was not okay for a long time and for me to even talk about it took a long time. It was really really tough to stomach and really tough to handle for me personally. And so I love that you mentioned that we can you know acceptance and is not always linear and we can embrace the Journey of the struggle and the Beautiful all of the same time. It can go exist.

Maya:

Totally agree with you that language is so important especially coming from the medical community because so much of the time. For example, if a person stutters and they seek out help sometimes the medical community is that first interaction and so equipping them with the language to make people feel comfortable and safe is so important Switching gears a bit. I really wanted to talk with these step about the advocacy you're doing in Colorado around stuttering. Can you tell us about what it was like advocating in your hometown?

Steff:

Yeah, absolutely. So my I saw what you did in in San Francisco you and Nina G and was so very inspired by your work and just thought oh my God is this is such a great way to reach the city. I live in right and and I so I saw what you did and I thought oh my goodness what's stopping us from doing an in Denver or other people doing that in other cities? So I approached Jenny McGuire. She's the executive director of my speech which is a national non-profit and led by Nathan malepetti. And he's a Harvard med student who is a person who stutters and doing amazing things Nationwide for the community and my speech provides scholarships for people who stutter to receive speech therapy services. So it's their motto is all about access right really cool stuff that my speech is doing and my private practice lips that love sex speech therapy is a provider for my speech. So like I may get an email saying hey, we have a person you know, and we make sure it's good fit all this all the things and then I can provide services for them with one of these scholarships, which is just such an honor to be a part of so that's that's Ginny. I'm Jenny is also a person who stutters and just has an amazing story herself. I approached Jenny because I thought okay. I I really don't feel like I can do this alone. Right like not only do I sometimes medically go down the swamp sometimes and go MIA for like a week, right? So any efforts like I need I need a backup partner right? But also, I just Ginny and I have just formed this great bond together. She lives in Boulder and I live in Aurora just outside of Denver and so I approached her and I said hey, did you see and of course she had seen your work Maya needed immedi's work with you and stuff. And I said you see what they did just did. Is that so cool and she was yeah, I was like do you want to do that with me and she's like, yeah. Um, so Maya gave us a lot of comradery and help and encouragement and wording guidance and and things like that, but we emailed a council woman in Denver and got a at first we got a you're in the wrong District email like who where's your private practice and then reminds in downtown Denver right by the Medical District? And so I said, I don't know where I am and I give them my address and they told me where I was I'm like great. Thanks for getting me about this stuff. I don't understand sometimes and districts and all that stuff. So now I know what is strict. I'm in which is awesome.

And I emailed the correct cancel women's office and we got a pretty quick reply and that reply had a couple of questions and Jenny and I both responded back and then we got a pretty quick. Yes. So Denver super super exciting and I'm still kind of my pinching my pinching myself because I I'm so passionate about the city of Denver that I live in and just working with the people of downtown and having a practice downtown. I love Denver as a city very much. I'm very compassionate about the people of Denver.

And so we got a quick pretty quick. Yes and international centering Awareness Day in October will now be proclaimed as like an official recognized date in the city of Denver. And then that also enthralled Jenny to contact Boulder and Boulder also said yes.

Maya:

And it was so cool to see everything in action when you guys were testifying at your respective City councils, and yeah just congratulations on getting that to done and I hope this shows for our listeners out there that it really just takes an email and a team that's there to support you to get this local resolution passed in your own City. It's it might seem intimidating but really it's possible and like I was with Steff and Jenny, I want to help you every step of the way. This is a major goal of mine for these next few years is to help stuttering Advocates and the stuttering Community past local resolutions in their own City. Like I am literally saying right now like I will take the time to help you every step of the way and what's really cool is there is a toolkit that kind of walks through the the steps on our website and it also includes where proud stutter and me can can help you every step of the way and it doesn't have to be around stuttering like you can apply a local resolution to any disability any type of holiday. It really is a tool to just help build awareness for you know disenfranchised communities that may not always have that space to speak out in the last thing I'll mention about the local resolution is we are going to have a pre-national stuttering awareness event called stuttering advocacy and there will go through all the ways you can advocate in your own the community including passing a local resolution. So as we round out the interview Tiffany I did want to ask if you can tell us a little bit more about your show and about your organization Diversability

Tiffany:

Maya the impact that you and Nina G have had to kind of create this movement of people realizing that they have power to influence the things that they care about in their cities and so a couple of years ago, I wrote a letter to San Francisco mayor London breed letting her know that July coincides with the anniversary of the Americans with Disabilities Act and if we could San Francisco could Proclaim, uh, July as disability pride month and so she signed that Proclamation and I think the Board of Supervisors the San Francisco Board of Supervisors has supported July as disability pride month in San Francisco on an ongoing basis. And so my small piece of this is right before I left San Francisco. I recently relocated to Los Angeles I asked if they could light up City Hall in purple in honor of the anniversary of the Ada on July 26th, and purple apparently is like the global disability color and then I've only been in La for a couple weeks and I just sent an email asking if they could light up City Hall and they put the request in so so yeah, definitely like to your listeners like reach out to Mya because it is really incredible like as someone living in the city that you live in how much your voice does matter and how much you can you know leverage your Council people or your supervisors to to celebrate the things that you care about in your local community. But all of that said I started I started Tiffany and you which is my podcast as a pandemic podcast about a little over two years ago and what I really wanted to explore on my podcast was all of the different ways that advocacy and allyship look both in and out of the disability community and as a function of doing this disability advocacy work for 13 years. Now, I had gotten plugged into a lot of different social impact communities and wanted to figure out a way that I could introduce my very disability centered audience to what was going on with black lives matter or mental health and and and chronic illness and and other other topics like that. I just wanted to talk very very briefly about diversibility, which actually, you know, kind of became the foundation of of all of the stuff that I work on now. I just found how powerful we are in community, you know, even stuff that story you shared about seeing the work that Maya Nina G were doing and how that influenced and impacted you.

Imagine what that looks like at scale right as why I continues to get more plugged into the stuttering community and I found that not only did creating a community like Diversibility helped me unlearn that shame that I had been talking about earlier, but it also made me realize how powerful we are in community.

Maya:

Yeah, of course and where can people find both your podcast and learn more about Diversability?

Tiffany:

Sure. So if you want to learn about diverse ability, we are at diversibility across social media, but we host we have communities and you know, we talked about allies in the importance of allies too. We have intentionally made our community disabled and non-disabled and so even though the conversations that we have are very disability centered. We want to make sure non-disabled allies are witness to our conversations and can step in and learn and develop intimacy as well because I actually think that the best allies are developed through like really genuine friendships and intimacy. And if you want to learn more about me, you can find me across social media at I'm Tiffany you thanks for having me on as guests. CO as guest hosts. I've never been a guest house before so it I I don't even know how I did. You did wonderful and stuff.

Maya:

Thank you. Thank you both for coming on and having set and sharing really your hearts with us because like it's not an easy thing to do and I just admire both your bravery and showing your hearts because really that's what's gonna make the biggest difference with really making an impact. And so thank you both so much for being here. And don't you worry, we're gonna have all the links of where to follow both Tiffany and Steph in the show notes before we officially end this episode. I did want to know that I am getting married at the end of May and so I won't be as active as I want to be during the month of May and stuttering awareness week. So I'm trying to do as much as I can for the Community ahead of that month because it's just not gonna work out timing-wise. So please stay tuned on all the great things happening event-wise at proudstutter.com/events.

And that's it for this episode of proud. Proud Stutter was produced and edited by me my chupkov. Our music was composed by Augusto Denise and our artwork by Mara Ezekiel and Noah chupkov.

If you have an idea or want to be part of a future episode visit us at www.proudstutter.com, and if you like the show, you can leave us a review wherever you are listening to this podcast want to leave us a voicemail check out our show notes for the number to call in more importantly tell your friends to listen to until we meet again. Thanks for listening be proud and be you.