Episode 29: Pamela Schuller on Mastering the Balance between Vulnerability, Comedy, and Advocacy

Episode 29 Show Notes

Humor is a bridge to understanding; it transforms conversations about disability into moments of connection.

Pamela Schuller is a passionate disability advocate and stand-up comedian. Pamela shares her journey with Tourette syndrome and how humor has helped her tackle tough conversations about disabilities.

Pamela opens up about finding the right balance between vulnerability and oversharing, the challenges of accommodating disabilities in public spaces, and her unexpected shift from stand-up to storytelling. Pamela discusses the impact of her experiences on her mission to create more inclusive environments.

Connect with Pamela Schuller on LinkedIn and on her website.

Transcript

Lily Newton:

Hey, listeners. Welcome back to another episode of everything you know about disability is wrong.

Erin Hawley:

Today, we have on the show Pamela Rae Schuller, who's a globally recognized disability and mental health advocate and professional stand up comedian. Pamela seamlessly blends her narrative through her comedy and actionable tips and tools of a seasoned educator. Her humor resonates with audiences from youth to corporate c suites.

Lily Newton:

Pamela has addressed international audiences and clients in every state in the US, reaching over a 100,000 plus children, teens, and professionals. Equipped with degrees in psychology and advocacy through art, a master's in advocacy and policy, and certificates in executive coaching and DEI methods, She has translated her expertise into a repertoire that instills pride in young people and inspires innovation in corporate teams through inclusive efforts. So Pamela is all about what Easterseals is about. Welcome to the show. We're so happy to have you on.

Pamela Schuller:

Thank you so much for having me. I always, like, wanna curl up inside myself when I hear my bio being read, but thank you for such a warm intro.

Lily Newton:

I know. We always tell our guests. We're like, well, we're gonna read it because it makes us sound cool because you are very cool. So I wanna read the whole bio, but I know I would be doing the same thing.

Pamela Schuller:

That's why I have you fooled. I'm not cool. I'm excited to be here, though.

Lily Newton:

Okay. Well, you fooled us well because we are geeked to have you on the show today. We have wanted you on for a while. We both are fans of your comedy. Erin introduced me to your stuff, and I love it. Before we get into the meat of the interview, let's go ahead and do our audio descriptions, which is a description of what we look like visually for our blind or low vision, audience, and I can get us started there. This is Lily speaking. I am a 27 year old woman. I am, mixed race white passing, and I have, I'm debuting a new hairstyle on the episode today. I officially have my dream Cruella Deville look where half of my hair is platinum blonde and the other half is black, right down the middle, which is kind of low key in the autistic community, like, the autistic hairdo, so I'm pretty happy to be a part of it. I say low key, but, anyway, we'll get into that. Erin, do go ahead.

Erin Hawley:

This is Erin speaking. I'm a white woman with red hair, blue eyes, and I have on a striped long sleeve shirt. And I'm in my bedroom, And it's very hot in here, and I'm I'm sad I chose this shirt to wear.

Lily Newton:

It's very cute, though.

Pamela Schuller:

I like this shirt.

Erin Hawley:

Thank you.

Lily Newton:

Should I go? Yes.

Pamela Schuller:

Hi, everyone. This is Pamela Schuller speaking. I am a white woman with blonde hair that is absolutely not natural, so you can see the roots coming in that are nice and dark brown. I'm wearing a dark blue shirt, and I'm sitting in front of a giant mirror. And, yeah, I'm excited to be here. Oh, and if you can't see me, what I have Tourette's, so I'm often winking and making funny faces as well, which is a big part of my life.

Lily Newton:

Oh, yeah. I forgot to add. Thanks for sharing that because I I'm wearing the the fidget necklace that I always wear, and I will fidget it with it. And then if you've been listening, my new favorite stim toy that's been in lots of episodes, I'll be playing with my little acupuncture rings. Oh, I'm obsessed. This is I we're not sponsored by this brand. I wish we were. They're just little rings, and it's, like, kind of sharp. So, it really helps me with, like, sensory input, and it's my new favorite thing. Was gonna say before we dive in on the questions, I have so much respect for people who are not natural blonde that have blonde hair now that I've done the half and half dye. This is a lot of maintenance.

Pamela Schuller:

It's a lot of work. Mine are highlights, so, like, I don't have to go quite as often. But just today, I texted my mother in Ohio and said, do you know if, like, a good blonde highlighter in Ohio? Because it is astronomically expensive in New York City.

Lily Newton:

Oh, yeah. If you're gonna go blonde, I feel like you you gotta have a hairdresser friend that you can do some kind of trades with. My creative partner, I am so lucky in life. The person I make short films with is an amazing hairstylist, so she does my hair and we're, like while we're talking about stuff. So smart.

Pamela Schuller:

That's the next move.

Lily Newton:

Yeah. Trade. You gotta get back into trade culture because everything is too expensive right now. Yes. Alright. Well, now that we've covered the important stuff, like dyeing your hair and our favorite fidgets, let's get into it. Erin, you wanna take us away with our starting question?

Erin Hawley:

Sure. So my podcast is everything you know about disability is wrong. So our first question to all our guests is, what do people get wrong about you?

Pamela Schuller:

Oh, about me or about Tourette's? So so often, I'll tell someone I have Tourette syndrome, and they say something like, great. Let her rip if you need to yell all the bad words. And I always like to say something like, I do, but not from Tourette's. In reality, out of every, like, 5 people with Tourette's, only one has an additional diagnosis of yelling words or phrases or repeating things. I did have that growing up, but I always like to be clear that at this point in my life, Tourette's is more kind of chronic pain. It's doing the same movements over and over. I still make noises. Like, I hiss, and I, you know, cough a bunch and things like that are are Tourette's.

Pamela Schuller:

But at this point in my life, the what I'm really dealing with, is the the kind of the chronic pain from doing the same movements hard over and over and over again. But I've even had doctors say, oh, so you yell bad words. Like, yeah, for fun, babe.

Lily Newton:

Man, the doctor aspect always makes us feel so, like, validated in the title of this podcast when it's like people who have spent my sister's a doctor, so I know just how much, schooling you go into. And, to go through that much schooling and still just know nothing about disability is, always quite telling of how much we lack disability education.

Pamela Schuller:

If you're a school listening in on this, especially not like, let's do do a class. Do a program. Have a speaker come in. I know a few.

Lily Newton:

Yeah. Thank you for sharing that. I didn't I had never, heard it ex explained like that, that chronic pain that makes so much sense, though, with the repetitive movements.

Pamela Schuller:

Well, everyone with Tourette's does repetitive movements and noises, that last a certain amount of time, but not everyone yells cuss words. And yet that's the piece the media kind of latched onto.

Lily Newton:

Oh, interesting. Yeah. That's that is I I wonder how that media portrayal became what it is because I feel like, yeah, that really is the way. It's like you the verbal is what I've always kind of thought of.

Pamela Schuller:

The sensational piece. Right? Like, southpits to everyone, that's the sensational piece. So I get it a little bit. Like, if you've got people who are uncontrollably yelling things, that's what the media is gonna pick up on. That's a lot of the stories. That's the TV characters. But we're we're doing a little better these days. We're pushing it.

Lily Newton:

Yeah. It reminds me a lot of the like, how we're seeing a uptick in diagnosis for autistic women because we're realizing that, like, women socially haven't really been allowed to do the things that were the obvious stereotypical markers of autism, especially when you think about, like, black and brown women. They're not like that's not the the young white male screaming, holding a train toy is not going to be an accurate representation, and that's interesting that that plays into Tourette's as well. Okay. So you kind of mentioned that you had you, at one point, were doing things like that, and I've seen written on either, like, your website or where there's bios anywhere that you were once diagnosed with one of the most severe cases of Tourette syndrome in the country. And I have to know who said those words to you and what was that like. Because as someone who's been given many diagnoses, to have a doctor say something like that would be intense.

Pamela Schuller:

Yeah. And I feel like there should be some kind of a word on the mantle. Right? Don't we feel like I deserve some kind of trophy? So that comment came from, at one point, my Tourette's was so severe. And I always like to clarify because I think people have this perception of me that I don't have it anymore or that I'd, like, overcome it. I have not. I still tick constantly. I still have emergencies where, you know, I break things from Tourette's. That is very much a part of my life. But as a kid, I would do these really aggressive, big physical movements over and over and over again nonstop. So, like, I threw my head back so hard and so many times I broke my own neck. I tensed my stomach muscles so hard I ruptured my appendix. So years ago when I was, probably, like, middle school is really when this it was middle school, but I don't remember exactly when that comment happened. I had a team of doctors in Chicago. Gosh. I have to remember all of the hospitals. I oh, Cleveland Clinic, Chicago, and one other major hospital were all working on my case. So the biggest kind of neurology programs in the country all had their head neurologist meeting about my case to try to figure it out. And so that's where that comment came from that all 3 of the major and I'm you know, it doesn't mean there wasn't someone who had it worse, but all 3 of the biggest kind of neurology programs at the time were meeting, and they had never seen a case like mine. I was in the hospital because of broken bones, and that's where the comment came from, that none of them had seen or heard. And, like, they all went to conferences, and I was the case they were talking about.

Lily Newton:

Wow. That's so interesting. What so were there, like, therapies you went through or anything? Like, what was the, pathway that led to no longer harm causing harm?

Pamela Schuller:

So I still do. I still there's still harm from ticks. You know, a few years ago, maybe 2 years ago, I ticked my hand so hard my pinky came out of the socket. I, regularly am still in occupational therapy. I I it very much is still I still have injuries. I think, I have fewer, and it's kind of less aggressive in how hard I tic, for a few reasons. A lot of people in their mid to late twenties when puberty finally finishes, our tics shift or calm down. For me, they calm down in the in kind of how aggressive they often were. I still have a severe case of Tourette's. So that's one piece that happened kind of mid twenties. I also for so many years of my life, I was trying to hold Tourette's back. I was right. Like, I have a number of diagnoses. I have OCD, ADHD, Tourette's. I'm I'm of short stature. And I wanted so badly, I think, to come across as, and I hate this word now, but as an adolescent, normal. I wanted to appear normal. And so I was constantly holding Tourette's back. And with Tourette's, for most of us, when you hold it back, it gets worse. So I also had a rough home life. I just a lot going on. So it's unclear why it shifted a little bit for me. At this point, I'm my meds for Tourette's are just Botox for Tourette's, which does dull the muscles. So I get Botox for Tourette's, a lot of occupational therapy, real therapy, a neurologist I know and love. So some combination of all of those things.

Erin Hawley:

Yeah. Totally. I love your journey into comedy, specifically, like, as a way to sort of manage your disability and the ways people understand it or don't understand it. So at what point in your journey did you end up relying on comedy?

Pamela Schuller:

So I ended up getting I like to use the word shipped away to what I call weird kid boarding school, which was the greatest thing that could have ever happened to me because it was just a place that was like, you do you, and, like, we're gonna figure it out. We're gonna get creative. We're gonna put you in arts. Whoever you are is welcome, and we're gonna push you, and we're gonna celebrate you. And boarding school, first of all, I had the most attention ever earned at the history of the school because I was an asshole. Like, I I was so snarky and so funny, and none of it was channeled yet. And they were the ones that put me in stand up, and I loved it right away. It became, at first, a coping mechanism and an outlet. And then over time, I realized I kind of have to process things offstage. I can do it in comedy writing. I can do it in therapy. I can do it but I I have to have processed before it goes on stage. Right? Like, comedy stand up isn't therapy. Therapy is therapy. Stand up is fun and where I get to do some education absolutely. But in a live show, you never know what someone's gonna say back to you. And if there's a chance it's gonna hurt your feelings, you need to have processed off stage. So boarding school were the ones that initially put me in stand up, and, oh my gosh, there are so many jokes I hope never see the light of day. Because as a 16 year old who was wildly inappropriate, I was I was crossing lines. I was, you know, creating jokes that were not socially acceptable, that probably in this day and age could get me canceled. But I think, especially as a kid, that was part of it. I had to find my voice. I had to find where is it humor and where is it harmful and hurtful. And, yeah, that was a that was a big part of my journey.

Lily Newton:

Yeah. I I do stand up as well, and I, feel so grateful to have grown up just before footage of your teens followed you forever. Because I feel for young comedians who are trying to find their voice and trying to find what their line is, and it's all being immortalized. And there's just that, like, pressure, so I appreciate you saying that because I think that it's it's really important to be able to be like, my jokes have grown. I'm not doing that anymore. And it is necessary to kind of push those lines, especially if you are using humor to kind of understand what's going on with you. I know that for me, humor was absolutely because mental illness was just such a serious part of my life that it was like, I have to be able to laugh about this or it's gonna take over everything.

Pamela Schuller:

Yeah. I, for years, like to show the story that, like, I didn't have any jokes about my dad dying because no part of it felt funny. And it wasn't until years after he died where I was doing stand up, and I was like, no. It's not funny he died, but things people said to me about my dad dying are funny. Like, there are things about it that are humorous. He died on Valentine's Day. Such a quick way to ruin the holiday. And so 1 year, I just started writing a bunch of jokes, and I was like, I'm gonna go do stand up about my dad dying on Valentine's Day. And because I had waited long enough, it felt cathartic and not as much like a like an open wound or, like, I was making fun of the fact that he died. No. I was, like, finding humor in my experiences, and that I think was the that shift actually allowed me to then think about how I talk about disability a little bit differently as well.

Lily Newton:

That makes sense. And I I appreciate what you said about the therapy is therapy. You have to process things. Because there's also a level of, like, if you're gonna talk about something that's gonna cause that little bit of discomfort, I think your audience, to be able to enjoy it, needs to be able to trust that you've got it. Like, you're holding it up there. The second that and I've been in comedy rooms where the second that you're in the audience and you start to feel like, I feel like I'm watching this comedian harm themselves. Like, I think that they're talking about things that they're not ready to be talking about, then you you lose your audience, and so it is so important to know you're ready to broach topics first. So I'm I'm glad you waited until you were ready to laugh at that.

Pamela Schuller:

You can't be vulnerable on stage and all of that, but I think there's there's, like, a line that the audience can often feel, and you just nailed it. Exactly.

Erin Hawley:

How do you strip that strip that balance between listening to the laugh and, like, delivering more serious content?

Pamela Schuller:

I don't think anyone gets it perfect. I think that's where to start. I think it's trial and error some of the time. And there's a difference between my stand up and my, like, what I tour with, which is comedy and storytelling about disability and mental health. There's similarities as well, but there's a there's when I'm on tour and I'm working with companies and colleges, there's a goal. The goal is to to make them laugh and to help them learn. And the goal is always a little bit different. For colleges, it's often like the goal is, like, we all have something. What does it look like to love the hard stuff about you? At companies, the goal is often how do we make this workplace more inclusive and accessible, but teaching about it through a way that's slightly different. And with typical stand up at a bar in New York at 10 PM or a club, it's make people laugh. And so I think some of that line is what is the goal of what I'm about to do, and then I go from there.

Lily Newton:

did you make that jump from, like, pure stand up to the the more, like, storytelling, and how did you start touring with that?

Pamela Schuller:

Accidentally. I made the jump accidentally. I have been doing stand up since high school and was, like, getting asked to speak at medical events about having Tourette's and schools about having Tourette's. And in my mind, those were separate. Right? Talking about my disability was not stand up. These are separate. And then I was asked to give kind of a it was a TEDx talk. It was like a specific brand of a TEDx talk. And they gave me a coach, and I wrote a serious talk because that's what the coach thought I did thought disability needed, a serious TEDx talk. And about a week before it, I had a meltdown. And I was like, this doesn't feel authentic. Like, I even in serious talks, I I wanna pull some humor and I wanna pull stories in. There's a way to make levity and funny moments in a serious talk. And so I rewrote the entire thing and told nobody and only rehearsed it for my sister's dog and gave the talk. And I watched the audience laugh and cry in a 13 minute talk, and someone came up to after me and said, get your ducks in order because this is about to be a career for you. And I was like, no. But just in case, I turned that 13 minute talk into a half hour and then I think 45 minutes. And sure enough, when that came out, it did well. And people started asking me to come speak. I started charging little bits amount of money, and that was, like, 10 years ago. And I just I kept building it. At first, it was, you know, just religious organizations and then high schools and then colleges and then companies, and it kinda just kinda just kept saying yes. Like, yeah, I can rewrite a keynote to be for this. Yeah. I can teach to that. And somewhere in the middle of all this, I got some degrees and additional, you know, master's degrees and kind of started combining all of that. So So it was an accident as is most of the great things in my life where I'm just like, yeah. Okay. Well, that's fun.

Lily Newton:

I love that. Did do you have, like, a favorite of since you there's that's a wide range of audiences you're performing for. Do you have a favorite target audience?

Pamela Schuller:

No. I like anything that feels a little bit like a challenge. I'm I'm probably one of the only comedians who, like, loves middle school audiences, though. Like, loves it. And when people ask me for a while, I was like, I don't know why I like it so much. And then I realized because the default is they hate you. Like, they don't want a speaker. They don't want you to be there. And there's something so beautiful about, like, there's nowhere to go but up.

Pamela Schuller:

Like if you win a group of 100 of middle schoolers or high school students over, it feels so cool. Right? Like, I don't know. I recently did a corporate gig, and I realized I knew the guy that booked me. I was like, we've worked together before. When he was in high school, I performed at his youth organization. He then got me booked at his college when he was in college and was on the booking board, like, the union board. And then at his company, when they needed a speaker on disability, he recommended me. And I was like, oh my do I owe my career to you, sir? Like, you you're my hype man. I and I'm now his hype woman. So that there's, like, something really cool about when, like, you when you do a good show and they like you and they're in middle school and high school, they they become a part of your little tribe.

Lily Newton:

Absolutely. I feel like there's also a level of, like, when you went over that middle school audience so I I don't have Tourette's, but I was misdiagnosed with Tourette's because I would stim in middle school in a way that doctors assumed was Tourette's. And now that we're talking about it, I'm sure I'm gonna start doing it more.

Pamela Schuller:

And, also, if you can buy people that have tics often, like, play off of each other's accidentally. So I will anything you do, I will also start doing.

Lily Newton:

Yeah. I'm glad you say that because it's such a, I always feel like I'm, like, imposter syndrome in my own uncontrollable body movements when someone else will be, like, moving in a way that's, like, moving their neck, and I'm immediately doing this. And I'm like, I'm sorry. I'm I promise I'm not making fun of you. This is just what this is what my body does. And so for me, my, mine's mainly in neck and shoulders, which is why I was so, like, of course, when you brought up the chronic pain part of this because that's also where 90% of my chronic pain is, and that makes sense because I'm messing with the muscles all the time. I never really put that together in my brain. But not being in control of your body as a middle schooler going through middle school, which is the time when normally you're not in control of your body because it's training so much, there's just ample opportunity to be bullied and to feel unwelcome. And so I I wonder, is there some kind of, like, healing nature to be able to be in in front of middle schoolers and talk about like, be at a place be where you are now with your acceptance of your identity performing in front of people who are at the age where you maybe didn't accept yourself?

Pamela Schuller:

Yeah. I feel like that's where I make real like, companies, I do feel like I'm making change. I love it. I love working with them. But there's, like, every time I do a middle school or high school show, I think I get healed a little bit more from those days, and that's different. There's, often a moment after a show for students where they, like at the end, where they all come to, like, talk to me. And there's this, like, sea of students who all they all don't have Tourette's, but they've all felt different. They've all felt maybe bullied or made fun of or, like, they don't add anything to this world or they don't you know, purpose is something they're thinking about. They're grappling with these big issues. And suddenly, an adult who is different, who has owned it and found humor in it and made a living doing it is they are getting them to laugh and feel and maybe cry and feel connected. And they all wanna come talk to me, and I think that's, like, a really fun moment for me. Because then I just, like, I get to look in the faces of these kids who are going through the thing that I went through with different diagnoses. And they share with me you know, I did a school 2 weeks ago, and a kid stayed after. He just wanted to show me his art. He just wanted to show me his art. And, you know, I knew that he's going through stuff. You could tell, but he just wanted to share that with me. I, those are the moments. Or, like, after a show for middle school or high school students, I I lay in bed and I open the other folder on Instagram messages. And I just get to see the things they've sent me, and I do my best to respond to all of them. If you have come to a show, I will respond. It might be 2 sentences, but it might be like, I loved meeting you. I can't wait to see your art, you know, in galleries. Like, I try to remember what that kid shared with me so that I can, like, have a moment and reflect it back to them. And it's someone once did that for me, and I I will remember it always. So I'm sure I don't have that effect on every kid, but if I can have it on a few, worth it.

Lily Newton:

I was gonna that was gonna be my follow-up was asking that, like, did you have that moment?

Pamela Schuller:

I had one as a kid. I had a few, I'm sure, but there's one moment that I think made me feel like an artist. And, I submitted a play for the Vermont Young Playwright Festival. I went to boarding school in Burlington, Vermont, and my play won. I want I was, like, one of the top 4 or whatever for the the playwright festival, and it meant that real actors came. And I got to rehearse with them for a day, and they acted out my 12 minute play. And it was so it was, like, life changing. But then the next day, we went and saw a show at at the theater. It was like a traveling professional group, and some of them had acted in our shows, because they'd been in town, and so they got to utilize. And and the lead of the show, I was obsessed with. And I went up to him after the show, and I asked him for his autograph. And he said, you were the one that wrote dinner's ready, weren't you? Because I bowed with the crowd and done a q and a, and and I was like, you know who I am? And when he signed my playbill, he wrote, like, I can't wait to work with you one day. And, and I remember just being like, I couldn't breathe. I was so excited that I'd just seen this man in a play, and he knew my work. And that was a moment where I was like, oh my god. I'm a teen, and I can make art. Like, that shifted the trajectory.

Lily Newton:

That's incredible.

Pamela Schuller:

And I've never told that story on a podcast ever.

Lily Newton:

I'm so glad you shared it here because it's so it's so important. And I I know there were those moments for me when it was like artists were talking openly about the things that I was trying so hard to hide. And I it's just it's so, so, so important. My the next question I have that I wanted to ask you about was talking about, you know, you discussed mental health. And mental health, I feel like, in the last decade, has become a lot easier to talk about. We're getting lots of content about people's mental health and things like that. But, you you dive into actually talking about, like, dealing with depression and suicidal thoughts, and that was one for me as a teen. And I've talked about this on the podcast before, but I I was just an extraordinarily suicidal teenager. Just my brain was that was its autopilot. And, you know, I was living in a world where I was told, if you say that out loud, you're gonna get sent away. Like, you're gonna get sent. And then there were a few comedians who like, very, very few at the time, and my friends always make fun of me because I'm so stereotypical. I loved Pete Davidson as a young 20 year old girl, but but it was because he had some stand up bits where he was so casual about using a word that I thought if I said, I was gonna get locked away. And so I am just so brave.

Pamela Schuller:

Funny. He's so funny.

Lily Newton:

And I so I just applaud that you are willing to talk about things that are a little heavier, and I wonder, like, what drives you to be open about that time of your life, and what's, like, your favorite part of being able to talk about it now? Because I just like to bring some light to talking about a conversation that people are scared to have.

Pamela Schuller:

Yeah. So I don't always talk about it. It's kind of time and a place where, like, at a corporate show, if they're wanting stuff on disability inclusion, I'm not bringing up my mental health journey. But I for years, I launched and ran a mental health program for teens, where we talked about mental health through creativity. Because I think as a kid, it it was taboo. It still feels taboo sometimes. I still, as an adult who is happy and loving my life, experienced some suicide ideation. Every now and again, it sneaks back into my little my little mean brain. And when that happens, I hear it. I acknowledge it. I know that I will not act on it, and I ask for help. And I think the reason it's so important for me, and I don't think everyone has to, it's so important for me to to write about it, to find humor into it, to to humor in it, to dive into it is because I think the way we get rid of stigma is to get people talking about it. And I you know, not everyone wants to talk about it, but you don't have to if someone else is. Right? Like, we just want you to feel connected and not alone. And so there is humor and tough stuff. Like, maybe not right away. I guarantee you I wasn't writing jokes as a teen where I was really suicidal, at boarding school. Those jokes weren't happening then. I was writing about filthy stuff. You know? Like, there was the but now that I've dealt with it and processed, I'm in a safe space. It is it it is both healing and cathartic for me to write about it in a way that hopefully isn't super triggering. But, like, gosh, sometimes my brain is really mean to me. You know? I like, there's a few days out of every month where my brain is an asshole. She's so mean. And I there's humor on that. And I also there's, I think, safe like, to know that it's okay to acknowledge it, ask for help is is, I think, hopefully, healing some of society and hopefully allowing people to feel less alone. And I think for me, a lot of it, my mental health was connected to my disability. I felt different. I felt like because Tourette's for a long time was loud. It was I was loud. I was disruptive. I wasn't always meaning to be now when I do it, I'm meaning to be. But as a kid, when I was barking and making noises and yelling, I felt like I took away from the world, and you internalize that.

Lily Newton:

Absolutely. And I think that there's so much power in the to me, I think, in saying like, hearing even you say, I still experience that because same. And, there's, like when I look back on the times that I think I was, quote, unquote, at my worst, it wasn't just the, like, suicidal ideation that was going on, but it was the judgment of that ideation where I was so so ashamed to have these kind of thoughts. And now I I meet those thoughts with with nothing but love of just like, I know you're trying to help me, brain, but that's not actually gonna help. So you can think about it, but it's not it's not a viable path. And and I think it goes for I mean, like, even, Erin, you talking about, like, anxiety and work anxiety has been so healing for me because, again, I was always having that second thought of, like, why am I having the anxiety of being hunted for sport while working on a social media graphic? Like, this is not that serious. But then, Erin, you've been so willing to talk about, like, yeah, I have anxiety, and it hasn't gone away. That now I'm like, okay. So now I can just experience it without sending that second arrow of judging it.

Erin Hawley:

I think for me, like, I used to never talk about my anxiety because I always felt like people would assume I'm anxious because I'm disabled, and I didn't want that negative, you know, ideas about disability. So I hid it for a long time, but eventually it got to the point where I had to get help. And working at Easterseals really allowed me to see there's nothing to be ashamed about. And it's okay if it is related to my disability, but if it isn't, it doesn't matter. That was really that was a big step for me to get help.

Pamela Schuller:

I love that. And I think it's so important because I sometimes I think as a as a society, we perceive getting help as a weakness when in reality, oh my god. It's a strength. Like, if we have the opportunity to be a like, live a version of ourselves that's less anxious, a little less depressed. Like, yes. Let's ask for help and go for it.

Erin Hawley:

And it definitely like having it being more in the public now is a huge help. And it's still a stigma, but it doesn't have to be. And I feel like having these conversations is helping helps other people to see it's okay and just take care of yourself.

Pamela Schuller:

And that, like, not all people with disabilities experience anxiety or depression. They might sometimes in our lives be related, but I know so many people who, like, that's just not a part of how their brain was wired, and they have a disability. And, a reminder that, like, we all live differently. We all you know, that's, like, part of the beauty of it.

Erin Hawley:

And I think it also helps it'll help me to recognize that my anxiety around my disability is more about ableism than my specific diagnosis.

Lily Newton:

That makes sense. And that that makes sense of the, like, lived experience of, you know, if you're facing ableism every time you're going outside, yeah, you're gonna have some anxiety about going outside. Like, there that makes I there's something, like, for me, that's always healing about being, like, these are logical fears I'm having, but maybe I don't have to let these fears, like, fully control everything I do. I trying to go back a second because I had something I wanted to say on the, oh, yeah. Like, getting help being seen as a weakness. I think that there's something in the, like, capitalist work hard society that is, like, you don't wanna take the easy way out. And, like, I think about that when it comes to, like, mental health medication. I'll see things online. It's like, that's the easy way out. You could instead make these life changes. I just want to make it clear for any listeners questioning this, I always want the easy way out. I want to live a life filled with ease, actually. That's a dream of mine. And I know that in, we had Chelsea Bear, who's an amazing, content creator on. We were talking about using, like, accommodations or mobility aids when you don't necessarily need it a 100%, but maybe it makes life easier, well, then do it. Like, you don't have to there's such an odd fight through it, push through kind of mentality that can come about. So I think it's really important to note, like, even with disabilities, even in the cultural society we live in today, it is worthwhile to pursue a life of ease and comfort. You deserve that.

Pamela Schuller:

I love that. Yeah. Yeah. I mean, my brain's going in a million directions of, like, yeah. Sometimes my tics are so bad. I'm so tired, and I feel so lazy. Yesterday, I got in bed at 7 PM, and I stayed in bed until this morning. Like you know? And I part of me is like, you are not pushing yourself, but sometimes it's okay to just take care of yourself. Like, we live in a society that's like if you wanna hit the the peak of your career, you have to go go go, and it's a badge of honor to go go go and not take care of your mental health and not listen to your body. And I can tell you right now, as someone with, you know, all of these things going on, if I go go go, I'm gonna stop stop stop for a long time. It's not gonna be a night. Yeah.

Erin Hawley:

I live my best life when I'm in bed. It's just, like, so relaxing, and it's quiet. My family's not walking around the house being loud. I can just, like, chill out, and it's just great for my mental health and my physical health as well.

Pamela Schuller:

Yeah. Is was it, night cheese from, 30 Rock where she eats her night cheese? Yeah. I'm gonna eat some night cheese.

Lily Newton:

Yes. I actually, literally, this week, was talking to my therapist about, like, if maybe I need to up my ADHD medication because I'm noticing that I'm spending, like, I'm taking big breaks, and I'm like or right after work, I'm, like, just sitting on the couch doing nothing for hours. And I'm like, I during that time, you know, I could be I could be writing more stand up or I could be creating other things or doing these kind of things. And my amazing therapist, love her so much, was just like, why do you need to do more? Why why what is that driving you? And I was like, actually, I don't know. I I just feel like there is that pressure. And I I do the same thing where I on days that my body's in a lot of pain, sometimes I just have to get in my bed and stay in my bed, but there is such a stigma. It's the word's always stigma of the like, and that pressure of of, like, oh, I feel lazy right now. I should be doing more.

Pamela Schuller:

For me so much is, like, impostor syndrome coming sneaking into play. There's, like, so many layers to this. And I if I spend the night in bed being mad at myself, then it doesn't actually do what it needed to do. I gotta just lean into it.

Lily Newton:

You know, that goes into that, the what I was saying earlier too on that, like, the judgment of what you're doing can often be just, like, almost more detrimental in that, like, needing rest is not an issue, but laying in bed going, oh, I suck, is not good for me. I'm glad you put yourself to bed when you needed to go to bed.

Pamela Schuller:

I think it's so I call it a time out. Sometimes, like, walking around New York, I'll be ready to scream at strangers, and I'll be like, you know what, Pam? Time out. You're gonna you're gonna take a time out. You're gonna hit a reset button, and maybe tomorrow, you could wake up a little kinder.

Lily Newton:

Yes. And that's something I've had to realize is, like, translating body feelings to emotions. I, there is a set body feeling that I have that for most of my life, I attributed to being incredibly anxious. And when I would feel it, I would try to figure out what was causing the anxiety and work through it and, you know, just logically try to root through it. And then, eventually, I just had to realize, like, based on just pattern recognition of what actually made me feel better, I was like, oh, that's that feeling is exhaustion. That feeling is just tired, actually. And so now when I feel that feeling, if my brain starts to be like, well, what's making me nervous and what's I'm like, that that exploration is not worthwhile, actually. I need to go to bed. I just need to lay down. And so it's it's it's important to figure out when your body's telling you to get rest because our work based culture is I mean, from a young age, you're taught to ignore that that cue.

Pamela Schuller:

Push through. Yeah.

Lily Newton:

Push through for sure. Thanks Thanks for being so willing to talk about, like, mental health and stuff. It's it's it's such it's my favorite topic, and I always think about young me and what it would have been like to listen to this podcast. And I think this episode would be incredibly healing.

Pamela Schuller:

I hope so. I love it. I'm having a great time. You're asking great questions. I talk about barking a lot. This is great. Mix it up a little.

Lily Newton:

That that was kind of the goal when we made this was, you know, what's the when you have a disability, there tends to be one thing that gets brought up that then you talk about every time. Like, for me with autism, it's late diagnosis. I'm constantly talking about being late diagnosed. I'm like, I got other cool stuff going on too. Like, the late diagnosis, the barking, it's cool, but there's other things.

Pamela Schuller:

There's other cool thing. That one, yes, is cool, but there are other cool yeah. Yeah.

Lily Newton:

Oh, that's funny. Well, before we run out of time, this is an Easterseals podcast, so we love to get into the kind of Easterseals specific topics. And thank you to Easterseals for making the space where we can have amazing conversations like this. So Easterseals is working for equity and access in our pillars, which are education, employment, health, transportation, and community, which are all areas of life that, need equity access and inclusion because they're very necessary. So we have some questions written based on each of those. Is there a specific topic you'd like us to start with?

Pamela Schuller:

Education or transportation are the 2 that, like, poof stood out.

Lily Newton:

Let's start with education, then we'll go to transportation. Great. Erin, you wanna ask the education question?

Erin Hawley:

Sure. So you're both a professional stand up comedian and an educator. So how did you blend these two roles to deliver in actual messages, especially with corporate, people and and younger people.

Pamela Schuller:

And say that last thing again. Sorry.

Erin Hawley:

In younger people and corporate. And you're kind of already chatting about that, but if you have any other additional thoughts.

Pamela Schuller:

Yeah. Well, I think, first of all, identifying as an educator took a lot longer than identifying as a comedian. I also I felt a lot of I'm trying to find the right word. A lot of stigma around having a disability in graduate school. I had, you know, I I had accommodations. I had my own room for testing and extended time. And I always like to say my own room for testing was really for other people because they really struggled when I barked through an exam, but that feels like a them problem, not a me problem. You know? I would like I would like accidentally be throwing pens because my arms are ticking so hard. And the minute you use the word test, I have all of the Tourette's. Like, any kind of test. It's all you could a doctor will be like, we're gonna test you for this, and I'll be like, that and then my own room for test or, extended time because Tourette's, when it's being timed, gets worse and it was hard to hold a pen. And I also, you know, typed everything, and I felt a lot of pushback. I had a professor tell me that my accommodations were inconvenient for them. And I, you know, wrote the snarkiest email back after 3 days of crying. But for 3 days, I cried over the fact that even in graduate school, my accommodations might be inconvenient for someone. And I had to go through this whole emotional journey to realize that's okay. It's okay. Because we all need different things at different times to be successful, and I would sure as heck go out of my way for anyone in my world to get to be their most successful self. And, like, it's okay that even as a graduate student, I require some different things. And once I realized that, I first of all, I share that on stage often when I tour, and so many people are like, oh my god. I've had similar experiences, or this has happened to me. And I realized education, you know, you're often put into a box. Right? Like, even before I went to boarding school, I was put in special education, or they tried to. There was a lot of back and forth because I didn't fit into a box. I was smart, and I had no control over my body and the noises that I made. And while special education is great for certain people, it wasn't the right fit for me, and we want kids and people to be in programs where it's the right fit. And I think living it and and experiencing it, when I was getting degrees and, you know, performing and all of that, I I it was, like, almost organic that I started combining them into something. I also think often we teach in keynotes and workshops, like, upfront. You're gonna learn this information. Most of us don't learn like that. And so there's something really beautiful to walk in and be like, yeah. I'll do my keynote, but I'm gonna get everyone laughing and feeling, and then we're gonna learn this upside down, backwards, and sideways, which is how I would learn it. And we're gonna reach the people who don't learn by a PowerPoint sitting still listening for an hour. And so that was, I don't know, fun and transformative to figure out, and now I I teach the way I learn.

Lily Newton:

What a simple but so extraordinary sentence. To teach the way you learn is really that's a that's a good one, Pam. Thanks. Man, that's yeah. I I feel like the, your accommodation is inconveniencing me is unfortunately a super common, story, which is wild.

Erin Hawley:

Yeah. I I went to college a long time ago, I, had a lot of professors who didn't see like, obviously, I need accommodations, and it's not negotiable. But younger me didn't say anything, and I just, like, didn't just dress the twins. Like, I changed my major to avoid an ableist professor. So but it all worked out in the end. But, like, today for me, if today would not have put up with that shit, like, at all. And it I was, like, growing up for me, it was learning how to stick up for myself.

Lily Newton:

Yeah. And I I get so excited about podcasts like this.

Erin Hawley:

Yeah.

Pamela Schuller:

It also sucks that it's on us. Like, I, taught I did, like, a a visiting professor at a university. I've done this a few times where I do, like, a week or 2 weeks. And, my rule of thumb is that if someone asks for an accommodation, we just do it for the whole class because chances are it's gonna benefit everyone. And I think we, like we're a little set in our ways, especially in the education system. I'm like, no. No. If you allow open notes for a test, people are gonna use their notes. Okay. Then why don't you ask it in a way that makes them grapple with the information and use their notes? Like, I don't know. I just I I

Lily Newton:

It's that curb cut effect. When you accommodate your students, you're probably making it better for the entire class. It's very important.

Erin Hawley:

That just blew my mind, what you said. If someone gets an accommodation, everyone should get it. That would change the game in education, and what an incredible way to also share, you know, how to be inclusive and make disability not something, like, different. You know?

Pamela Schuller:

We all have something. And so many kids grow up without ever getting a proper diagnosis, so they're not gonna get accommodations that we need. You know? I there are school systems that don't there are school systems that don't have the money to employ someone to be doing these things, and why should we penalize them in college as they are finally learning how their brains work?

Lily Newton:

Absolutely. I think that that's, yeah, I get I get so frustrated when workplaces or educational settings, like, need my documented proof of something. Because, I mean, I just like, do you realize the privilege it took to get this documentation? How how many doctors I had to see? How much school I had to miss? How how much work my parents had to miss? Like, that's not these these papers aren't attainable for everyone, so I really love that concept of what if we just accommodate everyone and curb cut the classroom. That's that's really great.

Pamela Schuller:

Means you just have to you change the way you do things a little bit. It doesn't mean you can do it the way you've always done it. It means you have to put some creativity in place to make sure that people are still getting the information, and we're doing it in a way that works for more people.

Lily Newton:

Absolutely. Well, I think I could talk about this for another hour.

Pamela Schuller:

And, Erin, I have so many follow-up questions about that professor that you've switched a major for. Have you run into them ever again?

Erin Hawley:

No. This was, like, over 20 years ago.

Pamela Schuller:

Do you think karma came after them?

Erin Hawley:

I hope so.

Lily Newton:

I hope so.

Erin Hawley:

Me too. That's so wild. Just the worst.

Lily Newton:

The worst. You ended up where you needed to be, but, like, just just horrific that someone's ableism could direct someone's life so much. And, also, like yeah. If you're a professor, just just ensure that you're actively trying to be inclusive because you never know what dumb some of the most offensive things people have said to me have I know been in passing, and they have not meant it as, like, a they've they've not meant it in in a cruel way. And then I'm sitting here ruminating over it for hours and hours, and I just it's why we need to be more aware of disability from a young age, learning how to balance their lives.

Pamela Schuller:

I call those oops ouch. Because you didn't need to hurt someone's feelings, but you did. And so what does it look like to, like, learn a little bit more and do a little bit better next time?

Lily Newton:

Absolutely. I love that. I love oops ouch as a method.

Pamela Schuller:

I don't I did not come up with that. That is not mine. Please know. I'm not sure.

Lily Newton:

I've heard oopsouch before with my, nieces and nephews, and they're very they're all under 5. And it is it is impressive actually the way that, like, I've I've been able to, take the kind of gentle parenting approach and and put that into, like, gentle correcting your ableism. Like, oh, you really wanted to ask that question, didn't you?

Erin Hawley:

I do that. Yeah.

Lily Newton:

Well That's awesome. But so before we run out of time, because I think we could take your you for hours today for real, transportation. I know you wanted to talk about that. I have our the question we had prepared was that, like, like, I'm interested. I know you don't drive, and I'm interested in what transportation is like for you, in a very car dependent country. But, also, if you have other transportation points you wanna bring up, we wanna hear them.

Pamela Schuller:

I could do a whole show on traveling traveling with it's like traveling with a disability. I okay. So here's the thing. I technically still have a license. At one point, I got a driver's license, and I did not pass the test. I was in my mid twenties when I went for this, and I was my Tourette's was still I was, like, crossing my eyes for minutes at a time. I should not have been driving. And the instructor was like, if you do one more thing wrong, I'd have to fail you. And I cried and said, I have Tourette's. And he goes, so does my nephew, and then he passed me. But he used the phrase against my better judgment. And I lived in Jersey for a long time while I was first working in a graduate school, and, I hit a parked house. And I say that, and people take a second. And I it came out of nowhere. No. I, like my car caressed the whole side of a house. I should absolutely not be driving. I'm the worst driver. It's unclear if it's Tourette's, if it's because I have ADHD and get distracted at all things shiny. I wanna read every billboard. I wanna read it twice even on the highway while I'm driving. And, you know, there's, like, a number of reasons why I shouldn't be behind the driver's seat for everyone's safety, but it means that as someone who tours 10 months out of the year, 9 to 10 months, I am a pro at planes and trains and buses and shuttles and Ubers. I also, by the way, see a direct correlation between my when my Tourette's is worse and my Uber score goes down, which someone needs to do a whole article on. It's someone needs to do a whole article on. It's like a direct correlation. The times I've gotten bad scores, either one time he asked for my number and I said no, that got me a one. But the other two times I was just ticking and making noises, that got me a bad score. But I think, gosh, we have so much needed in society to make this place accessible. I live in New York in part because you don't need a car in New York City. And I have so many friends who yield use mobility devices or wheelchairs or have kids in strollers. And even the city even with the subway. So while it's accessible for me, Pam, who doesn't drive, it has so far to go for my friends who use, you know, mobility aids or use wheelchairs or my best friend who has a baby in a stroller. And I just I feel like I feel like I'm sometimes the amount of creativity that goes into figuring out how to get to some of my gigs should be award winning. And I've had a few people not book me because of it. You know? Because, I'd I'm not gonna say who it was, but an organization wanted to book me 3 hours from any airport. And I was like, I think I can figure it out. Like, there's a train that goes 45 minutes from you. I'll fly in. I'll get on the train, and then I'll do an Uber. It might cost a little bit more, but still about the same as renting a car, and they decided that was too much that was too much effort for them to have to think about even though I was booking it. So we have we have a ways to go.

Lily Newton:

It it again plays into that, like, well, it's inconvenient narrative. For who? What in life is convenient? Like like yes. That's that's why, like, we form relationships with each other, and we, like, you know, hire people we respect to come talk because it's like, I'll do any inconvenient thing to be able to get you here. Like, it's so it's just such an odd, it really makes me feel like, oh, wow. You have no one with disability in your life, or you're completely ignoring it when someone is so taken aback by inconvenience because I'm just like, who care? Like, let's do it. Let's be a little inconvenient for a little bit, gonna be worth it.

Lily Newton:

Let's have the best conversation possible. Yeah. That's that's I'm sorry that happened to you that they didn't book you, but I feel like it probably you probably would have faced a lot more, bullshit from them as well.

Pamela Schuller:

Sometimes I think it's okay to listen to what people are not saying in terms of my mental health.

Lily Newton:

Absolutely. Absolutely. Okay. I have one final question before we go if you if you're okay with us keeping you a couple minutes after.

Pamela Schuller:

Yeah.

Lily Newton:

Okay. So, thinking about community, you are good friends with one of our favorite past guests, Tina Fremmel.

Pamela Schuller:

We were just together last night. Oh my goodness.

Lily Newton:

That's amazing. And I as a disabled comedian, I just had to ask, like, what is it like getting to do comedy with other disabled comedians, and what is that like, have you been able to find, like, a community of people who understand the shit you gotta deal with?

Pamela Schuller:

Yes. And, I'm friends with creatives, a lot of creatives with disabilities, not all comedians with disabilities. And being a part of just, like, the creative community of people who are, like, supportive and, like, roast each other, right, like, where there's, like, fewer boundaries, I think, is transformative and freeing. Also, I think Tina Fremont is one of, if not the funniest voice in the comedy world, disability or otherwise. Like, take disability out of it. Her brain is so funny, so funny, and she's just like a good human. And, being friends with her pushes me because she's funnier than I am, and I am okay saying that. I hate that she's younger than me. That I struggle with. Like, come on Just catch up. But she's so funny and so brilliant. And the the the community of comedians and performers with stuff going on first of all, it's like most of us. But leaning into that has been transformative and amazing and empowering, and it's given me agency. And I'm thankful for every day that I get to work with creatives who kind of own what makes them them.

Lily Newton:

Just so many snaps for that. I just love that so much, and I think that, Erin, you'll agree that's the reason this podcast is, like, the best part of our jobs.

Pamela Schuller:

Like, that's something. I'd be remiss if I didn't say this. The, like, at like, industry of acting and, like, TV film, we've that I'm, like, working to break into right now, and no one knows what to do with someone with Tourette's. And so that's an area where I'm now making new friends because I wanna learn from them. I wanna push myself in that area and and figure out how do I advocate for myself in an industry like that, And how do I yeah. So that's, like, the the new journey, and I also love pushing myself and trying new things. So I'm literally going from this to an audition today.

Erin Hawley:

Oh my god.

Lily Newton:

Amazing. Terrific. I hope you I hope it's amazing.

Pamela Schuller:

...but I'll learn.

Lily Newton:

Exactly. And I think, yeah, that's certainly an industry that is getting better when it comes to disability representation, but it still has a long way to go. And, oh my god. Like, see, again, just thinking of, like, if I had been a little, like, 13 year old me feeling like I was the worst person in the world because I was moving my neck, getting to see a character who authentically was ticking would have been the I mean, it would have been life changing, life affirming.

Pamela Schuller:

The character doesn't necessarily have to have Tourette's. Ticks and twitches show up all of the time. Get let me just be a nervous character. Yes.

Lily Newton:

Yes. Oh my goodness. When I was in acting school, it was so much of it was me just, like, shoving down everything authentic about myself to try to be real, and that makes bad scenes. Yeah.

Pamela Schuller:

Way. In an in an audition 2 weeks ago, it was live. And I said, listen. I just wanna make sure you know I have Tourette's. It's not super active today, but it often is. It would be on camera. And I was like, I can always lean into it. I can't lean away from it.

Lily Newton:

You know, that's a good phrase just to have in general. I can lean into this. I cannot lean away. I love that. Thank you for spending an hour of your day with us, being in community with us today. This was truly incredible. Erin, any any closing words? I know this is an episode you were very excited for.

Erin Hawley:

I'm a big fan. I mentioned that before.

Pamela Schuller:

I'm a big fan of both of you.

Erin Hawley:

Oh, thanks. No. But thank you for being so open and honest. It was a great conversation.

Lily Newton:

Yeah. This was amazing. Thank you for being on our show. Thank you, Tina, for recommending you to be on our show and giving us your contact information.

Pamela Schuller:

We love that girl.

Lily Newton:

Oh, we do too. We love both of you. I feel like the coolest little Chicago comedian ever, and I know 2 of the funniest New York comedians now. And, again, disability aside, I just think both of you are clever, just clever people. Makes so much sense that you 2 are friends. But, yeah, thank you so much for being on today, for having this incredible conversation. Erin, thank you for hosting with me. I love it so much. And, to our listeners, thank you for listening. Thank you to Easterseals, and we will see you next time on another episode of everything you know about disability is wrong.

Erin Hawley:

If you like what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton:

Thank you to our listeners, and as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley:

And I'll see you next time for another episode of everything you know about disability is wrong.

Lily Newton (commercial segment):

This is a podcast brought to you by Easterseals.

Erin Hawley(commercial segment):

You know, we actually work for Easterseals, but maybe our listeners don't know what we do.

Lily Newton (commercial segment):

That's true. Easterseals is leading the way to full access, equity, and inclusion for disabled people and their families.

Erin Hawley(commercial segment):

And did you know we've been doing this for more than a century?

Lily Newton (commercial segment):

This includes helping disabled people find meaningful employment and addressing health care needs for all ages.

Erin Hawley(commercial segment):

We're proud to serve communities across the country and ready for the next 100 years. For more, check out easterseals.com.