Episode 17: Advocating for Accessibility and Equity: A Conversation with Lolo Spencer

Everything You Know About Disability Is Wrong Podcast

June 11, 2024

Episode 17 Show Notes

In this episode, hosts Lily Newton and Erin Hawley sit down with actor, model, content creator, and CEO of the lifestyle brand Live Solo, Lolo Spencer. Known for her advocacy work and efforts in changing the narrative around disability, Lolo shares her incredible journey and vision for a more inclusive world.

We also explore the broader implications of representation in Hollywood and the importance of community building, with Lolo emphasizing the need for disabled actors to be cast in diverse roles.

Tune in and be part of the movement towards a more inclusive society!

Transcript

Theme song:

Oh, my goodness. You are such an inspiration. Wow. You really are. You're so strong. Can I fetch your service doll? 1, 2, 3, let's go! We are artists, parents, teachers Good guys, bad guys students, leaders Not your inspiration Yeah, I wrote it in this song. Everything you know about disability is wrong. Everything you know.

Erin Hawley:

Hey, everyone. Welcome to another episode of everything you know about disability is wrong. Today, on the podcast, we have model, actor, content creator, disability advocate, and CEO of Live Solo. Welcome to the show, Lolo Spencer.

Lily Newton:

You might know Lauren Lolo Spencer from her role as Jocelyn on Mindy Kaling's Max series, The Sex Lives of College Girls, or from her indie spirit award nominated performance in the film give me liberty. Her latest film, Bob Trevino likes it, won this year's narrative feature jury award and audience award at the South by Southwest Film Festival. One of In style's 50 women making the world a better place, Lolo is an ambulatory wheelchair user due to a neuromuscular mobility disability. Last year, she launched Live Solo, a lifestyle brand dedicated to young adults with disabilities who seek independence and self empowerment. Welcome to the pod, Lolo.

Lolo Spencer:

Thank you, y'all. I'm happy to be here.

Lily Newton:

We are so excited to have you. Before we get started, let's do audio descriptions. So I'll lead us off and then Erin will give hers and then you can give yours. Perfect. This is Lily speaking. I am a white presenting woman in my mid twenties. I have mid length brown hair and green eyes. Today, I'm wearing a black turtleneck and a gray cardigan along with my necklace that I fidget with often during the recording.

Lily Newton:

Erin, you wanna go ahead?

Erin Hawley:

Yep. I'm Erin. I'm about presenting woman with red hair and blue eyes, and I'm sitting in my wheelchair, and I have a striped long sleeve shirt on.

Lolo Spencer:

Yes. So, I'm Lolo. This is Lolo. I'm a black woman with big silver hoop earrings, a black headband, curly brown hair, a red t shirt, and a beautiful gap that is always showing when I smile.

Lily Newton:

I love that. Welcome to the podcast. We are so excited to have you. This is gonna be a great episode. Exactly. Listeners, we always do a little preproduction call with our guests. And with Lola, we were just Kiki and having a great time. So I know this is gonna be great.

Lily Newton:

So, alright. Let's let's get into it. Let's do the let's do the interview. Let's do it.

Erin Hawley:

So, we we need to ask this question to all the guests. Since the name of the podcast is what it is, we wanna know what do people get wrong about you and your disability?

Lolo Spencer:

Oh, that's a great question. What do people get wrong about me and my disability? I think, for me, because I'm an ambulatory wheelchair user, a lot of people assume that I'm permanently using my wheelchair, because a lot of people don't know that you can still have ambulatory movement. For those who don't know that means, it basically means you're, like, able to walk and stand still. A lot of people don't know that that exists. So I think that's one of the the main things about my disability that people get wrong. And I would just say, like, maybe overall, just this idea of, like, life was, like, an extremely tragic experience or the reason I became a disabled person was because of an a tragic experience. That wasn't necessarily my case. It was something that was very unexpected for sure.

Lolo Spencer:

Like, didn't see it coming from anywhere, but it wasn't the result of something, like, horrific that people tend to associate when it comes to people being diagnosed with these. You know? So I would probably say those are the 2 biggest things that people tend to get wrong.

Lily Newton:

Yeah. That makes sense. I think that when you see, like, there's always the people that are trying to spot, like, people who use wheelchairs. Like, that person's leg moved. They don't need to be in this wheelchair. Like

Lolo Spencer:

Yeah. And it can turn really violent. Like, I've heard of people who are ambulatory who have really experienced, like, extreme harassment, just like people being mad disrespectful to them because, again, they're like, what are you doing parking in the handicapped spot? And it's just like, woah. Relax. And, also, let's fix language. But, you know, that's a whole other thing for another day. But

Lily Newton:

True. Truly.

Erin Hawley:

But Yeah. A whole lot.

Lolo Spencer:

Go wild. And it's just like, relax. You're not the disability police.

Lily Newton:

Yeah. It is odd how much people want to self designate themselves as the

Erin Hawley:

disability police. It is a role people want to play, which is weird. Disability police. It is a role people want

Lily Newton:

to play, which is weird.

Erin Hawley:

It

Lily Newton:

is so weird. And it's just like

Lolo Spencer:

and then they want

Lolo Spencer:

to play it, but then, like, won't talk to the manager. It is so weird. And it's just like and then they want to play it,

Lolo Spencer:

but then, like, won't talk to the manager if a place doesn't have, like, a ramp. It's like so you wanna, like, accuse people for faking or what you assume to be faking, which obviously people aren't faking, but it only stops there. Like, it only starts and stops there just so you can feel like you have a moral ground to stand on when you go home at night. And you could go tell your friends and family, this is what I did today. Here goes my gold star to humanity. I cussed out somebody who needed the space, I didn't know they needed the space, and, like, he bugged me. It's the motherfucker's bad.

Lily Newton:

That is such a good point of the, like if you have that energy, if you wanna come at something, like, and be the disability police

Erin Hawley:

Yeah.

Lily Newton:

Go talk to places that are inaccessible. Like Yeah. That's how the energy should be used. I that's such a good way to put it because, like, sure. If you've got the energy I don't have the energy to yell at random people throughout the day. Literally. If you've got it, do it at inaccessible spaces or, like, There's just, yeah, there's no need to try to police. But no one's like the trope of faking a disability, like, that comes from stereotypes from old movies.

Lily Newton:

Like, there's no one's really doing that. Like, there's not Whatever. The benefits aren't good enough. I wish the benefits were good enough. I wish the government gave us unlimited money and there were ramps everywhere.

Lolo Spencer:

Right. Then it would make sense why people would, like, want to fake it. But, like, no.

Lily Newton:

That's not the case. Those are great things that people get wrong. And, of course, the the tragic backstory. People definitely I think that's an assumption that from having a, like, neurological developmental disability like that, people bring that to all aspects of disability. Just like, oh, what happened? Like, you did a thing or, well, I'm so sorry that I'm so sorry you are who you are. I'm like, well, I'm

Lolo Spencer:

not Literally, I went to the ear, nose, and throat doctor, super random, and, listen, allergies and sinuses have really been a thing for me lately. I don't know if it's my age, what's happening. But I went to the ear, nose, and throat doctor, and the main entrance was not accessible, was not given a heads up about it. I mean, because granted, I guess, I didn't say it, but at the same time, it's like, should I have to? Any though, it wasn't accessible in the front, so one of the nurses had to come downstairs to lead me to some other back way to, you know, get up to the doctor's office. And as we're in the elevator, she's just like, oh, no. What happened? You're too young. And I'm like, I want to scream. Like, she was like, you're you're too young.

Lolo Spencer:

What happened? And I'm like I was like, Nothing happened. Nothing happened. I actually just was like, Nothing happened. I was like, there's no and then just this idea of you're too young. Right? Like, what is this ageism association with disability where it's like it's expected if you're old to have a disability. But if you're young with a disability, again, your life is already, like, fucked. And it's just like so many things happen to so many people at so many different ages. It's like, what is that about? I just thought that was that was very for a

Lily Newton:

sec. No. Yeah. It it is interesting because at the same time that that exists where, like, oh, you're too young to be experiencing what you're going through. Then when people do accept disability, I feel like there's also the other side of ageism of, like, infantilizing, like, assuming that you're like, Erin, people always assume you're so young.

Erin Hawley:

Yes. Like a child. Yeah. And I just turned 40, in August.

Lolo Spencer:

Hi. Shout

Erin Hawley:

out. I remember one time, I don't know if I already shared this story. But one time, me and my dad went to a haunted house Mhmm. In South Carolina. And, at the time, I was 25, maybe. And I definitely get to get the tickets to get in, and the lady says to my dad, she has to be at least 8 years old to get in. And I was like, I'm older than you. I Yikes.

Erin Hawley:

Yeah.

Erin Hawley:

That's so wild. So, you

Lily Newton:

know, you're getting it on both sides. So, like, you're too too young for this to happen, but then

Lolo Spencer:

Once people accept it, then it's like, oh, let me treat you like a child. It's like, okay, which one y'all want us to be?

Erin Hawley:

We want us

Lolo Spencer:

to be the age that we actually are or not. Like, just what's the t? Yeah. Yeah. It's so weird. It's it's so weird. And then plus, it's like this it didn't make me feel good either because it was just like, you're trying to make the fact that I'm younger than you expect me to have a disability. So, like, almost like my youth is being attacked or something. Or, like, my youth like, it just did it's just the way she said, you're too young.

Lolo Spencer:

I'm just like, fuck. Okay? Like, you know what I mean? Like, thanks for reminding me. Like, what the fuck are you saying to me? Like, what what is it was just so uncomfortable. I just did not like it at all. I was not a fan.

Erin Hawley:

Yeah. Yeah. That's I'm sorry you dealt with that because there is,

Lily Newton:

like, an underlying, like, the time of your life to have fun is just

Lolo Spencer:

Exactly that, Lily. Like, it was exactly like like, you should be fucking in out and, like, doing all of these like, you should be all of these things. You're too young. You're too young. And it's just like, who's saying I'm not doing any of those things, though? Like, what?

Lily Newton:

Yeah. I'm out. Right.

Lolo Spencer:

I'm out. I'm out here. Like, girl, I showed up to this appointment by myself. Like and you see the way that I'm dressed. Like, that's, like, ulti no shade, but, like, you see that I'm not, like you see I have a good energy and a good spirit with me today. Like, what about my is just I don't girl. Okay.

Erin Hawley:

I told you. I'm sorry. I'm sorry.

Lolo Spencer:

I'm sorry. I could go on this tangent forever clearly. So, yes. I'm sorry.

Lily Newton:

Tangent's welcome. That's what this space is for because sometimes that's the only way we can get through. Just like blatant ableism is just

Erin Hawley:

to have a space like this where we could be like, what the

Lolo Spencer:

fuck? Yeah. Literally. Literally that.

Lily Newton:

But on to other topics. Yes. Kind of similarly adjacent, though. In January, you made a video with one of our past guests and icon amazing woman, Jillian Mercado, highlighting your experiences as disabled actresses in Hollywood. Yeah. What has the response been to that video? I saw it went pretty viral. And so how much how much fun did you and Jillian have making it? Because she's a prize.

Lolo Spencer:

When Jillian and I get together, it is a time. Okay? Jillian and I have so much fun. We are forever, like, peeking on the phone, just having a blast. That is my girl. And, you know, the the interesting part about us doing that video together, you know, it was during a time we both needed laughter. And so it was so special because we leaned on each other to do something we love to do, which is, you know, act and be funny and, you know, and and be together in friendship during a time we both really needed that kind of, like, emotional support. So it was a really fun video. We totally enjoyed ourselves.

Lolo Spencer:

Like, we like, even leading up to the video, we're, like, leaving voice notes to each other, and we have, like, this, collaborative note on our phone of, like, all the ideas and and the the different things that we were gonna hit on in the video. And it was great. It was honestly just great. And so as far as the response, a lot of people really caught the humor that we were creating in the video. Like, people understood what we were saying as far as, like, the seriousness of, like, that's fucked up. Like, these are the things that they've had to experience. But because it was done through laughter, I think people really were able to hone in on the fact that we made light of these situations and these experiences that we had without it being this rah rah rah, like, activist moment. Do you know what I mean? And so, yeah, like, it really and I think that's what made people really enjoy it, you know, disabled, nondisabled like.

Lolo Spencer:

And I enjoyed it. I I wanna do more things like her and I have talked about. Like, girl, we should do, like, another video or something. I don't know what we would do, but, you know, we just we just knew it was a good time and something special. So, and luckily, everybody enjoyed it and everybody understood the jokes. So it was great.

Lily Newton:

Yeah. Awesome.

Erin Hawley:

I love that. Yay. Yeah. So, like, I know in our pre projection call, you talked a bit about, like, your time in Hollywood Mhmm. And how a lot of people assume that you had some kind of, like, tragic, difficult time in Hollywood. Can you talk a little bit about that?

Lolo Spencer:

Yeah. I mean, you know, first of all, when we talk about the entertainment industry in general, it is known fact of the abuse and manipulation and the harassment that people, disabled, non disabled, have experienced in entertainment. Right? So Hollywood, just in general, I think, already is known for its not so good parts of the industry with all of the documentaries that are coming out and the, you know, me too movements and all these different, you know, celebrities going to jail for what they've done. You know, people are already under that assumption that Hollywood is this scary, daunting place. And in many, many ways, it can be it has been for a lot of people. For me in particular, I haven't had that experience. So I think it's important to also share what it looks like when cast, crew, your team all get on one page to be sure that you feel the most comfortable when showing up for work. And what that looks like and what that means now.

Lolo Spencer:

Was there, like, some things that maybe could have been better? Sure. Absolutely. But was it anything that felt like it interfered with my ability to perform or show up for work. Nothing like that has ever happened for me. I mean, to be honest, the films that I was on that I've been in have been independent budgets. So it's like you kind of can gauge what your expectation is as far as, like, what you can get. Right? But none of my disability accommodations were ever not met. Like, those were always met, you know? But it's like, is crafty the best on an independent film? Probably not.

Lolo Spencer:

You know what I mean? But that has nothing to do with disability. That's just, you know, whatever. Your own preference. But I haven't had those experiences, and I think being able to share that that's the case is important so people know that they too can have a good experience living out their dream if this is what their dream is as well. Now the thing is that I always like to be very clear about is it does not happen unless everybody is all in in making it happen. If one person is like, I don't really think that's important, then the whole domino effect happens. But your team your team, your manager, agent, assistant, whoever's on your team, those people and yourself have to be very, very clear and very specific about what your needs are on set. From the moment you are asked to leave your home to go to set and come back home, you better know what your checklist is and what that looks like and whatever those needs are.

Lolo Spencer:

Secondly, the production has to be completely on board from the if you're doing a TV show from the showrunner down to the PA, everyone has to be on board and understand. What we're asking for isn't a bougie request. What we're asking for is actual accommodations for us to be able to function while we're here and be as comfortable as possible or as relaxed as possible. So that way, we can perform at the best of our ability, which is why you cast me to begin. And I think when disabled talent knows that they got cast because of their talent, You go into it knowing that production wants you to play this role. So don't go into it. Oh, I'm just happy to be here. I'll do whatever you guys need me to do.

Lolo Spencer:

Oh, I'm not gonna ask because I don't wanna rock the boat. Fuck that. They wanted you. So ask for what you want in order to have the best experience that you can have while on set.

Lily Newton:

That is such phenomenal advice for people pursuing who wanna be on sets. And, also, just, I think, in general, you know, whatever your workplace is, like, self advocacy is really important. And then also your management's advocacy is really important and having everyone on board. I that what you're saying made me curious as because you have auditioned for both roles that have specified this is for a character with a disability and roles that have not. And do you do you ever think about, like, when you're auditioning for those roles that have not specified? Like, do you think self advocacy might be more difficult on those sets because they didn't know disability was going to be a part of their set? Like, I I'm just interested in that experience.

Lolo Spencer:

That's actually a very good question. For everything that I've booked so far, it has called for disability. So I I can't really say what the difference would necessarily be if they did choose me, yet the character itself didn't call for a disability. I don't know. However, my team and I have booked me, maybe if not for, like, an acting role, it was for a modeling job or a speaker's, you know, to go speak somewhere, be on a panel somewhere. So we're used to me going to places that aren't disability focused Mhmm. And yet still having to ask for the accommodation for what I need in order to show up and, you know, be there for what they want me to be there for. So we're used to it.

Lolo Spencer:

So regardless, like, if if I were or when I do book a role that didn't necessarily call for a disability, we'll already know what to ask for. So it's like, you know, how production will respond to that. I would hope it would be, you know, welcomed, but I would just think that it would be very, not smart on their end Right. To cast a person with a disability than be surprised that they have accommodations that they're asking for. Like

Lily Newton:

Absolutely. And, you know, I like that you spoke that, if into existence and made it a when because nondisabled actors take disabled actor roles all the time. So we do need to get to a point where disabled actors are getting hired for characters that don't necessarily specify because that's how we'll get to a point where sets know that they have to be accessible all the time.

Lolo Spencer:

Exactly. Exactly. And I think that's so important too because I've always, you know, advocated. Right? At the end of the day, Hollywood is nothing but a dream place. Like, it a lot of these scripts are from people's fucking imaginations. Right? Like, this is half of the shit isn't even real life. So it's like, if we're all pretending at the end of the day, why not be able to accommodate people the way they need to be accommodated? You know, once I get a callback and there's non disabled people at the same callback audition, then it's like, alright. Everybody play whoever you wanna play.

Lolo Spencer:

I don't care. I'll let a non disabled person play a disabled person because now I know I can play a role that doesn't necessarily call for disability. You know? And so when that equity is there for us, who cares? Everybody have at it. Like, what's a habit anyways? That doesn't even exist. Like, you know what I mean? But there are roles for people. So

Lily Newton:

Yeah. You know, I wish people understood that that, like, once we achieve equity, then you can do whatever you want. Like, you know, then it's fine because we can, you know, and this applies to, like, trans actors and queer actors in general. Like, just how do we yeah. It's just a equity makes it better for

Lolo Spencer:

everyone. Exactly. Because there's plenty of gay actors, queer actors who play straight.

Erin Hawley:

Mhmm.

Lolo Spencer:

And there's plenty of straight actors who have played queer. So it's like everybody's getting a is able to do it. Come on now. Disability, we're usually, unfortunately, at the tail end of getting what we need. But if we can get it, my theory is is if it can start showing up in entertainment, it will shift the way the rest of the world views our community. And I hate to rely on entertainment to do it, but, honestly, entertainment shifts culture and creates change. It just is what it is.

Lily Newton:

Absolutely. And that goes to, you know, what you're saying about the video you made with Jillian, the fact that the the point was made so much better to your audiences because they're laughing, they're enjoying it. Like TV and film is always going to have that ability to like, we're already pretending. We're already suspending disbelief. So that puts you in, like, an open state of, like, Oh, I didn't realize the world is bigger than I expected. I think that's really great. And you know, I'm so glad you've had great experiences on set and haven't had the, again, the tragic backstory that's assumed for so many people. So you're currently filming the new season of Sex Lives of College Girls.

Lily Newton:

Right?

Erin Hawley:

Yes. Yes.

Lily Newton:

What has been do you have, like, a favorite on set experience from

Lolo Spencer:

filming? Not one that I can talk about necessarily. I will say I I will say the one thing that I was really excited about this season is so it's notoriously known that there are no wheelchair accessible trailers except this one trailer that exists that isn't even, like, as comparable, but it's, like, cute enough, you know, to get through your day. That trailer was at base camp this time. And for those who don't know, base camp is the area on every production where where everyone kinda rouse up together. Cast, crew, everyone is there. That's like when you can't find somebody, like, you start at base camp. Like, well, if you're looking for somebody, you start at base camp, see if they're at base camp, and then if they're not, then they better be on set. Because if they're not on set, then it's like, where the hell did this person go? So so base camp is, like, the place where everybody hangs out.

Lolo Spencer:

So my trailer is on base camp this season. So I was really, really excited about that because previous seasons, I was in an accessible room that was a little further away from base camp, which was great in the sense of the fact that the room was so big. So I did enjoy that, like, the space. It feels good to be to have my trailer at base camp because now I can yell at my castmates out the window and be like, Hannah. Like, you know, I we would just have us a good little time, keep the the trailer doors open, play some music, just enjoy ourselves, you know, yell out to somebody. Be like, can I get a doughnut from Crafty? Like you know? And just just chill with each other and go to the Starbucks that's on the lot or something like that.

Lily Newton:

That's a fun cast. You wanna be able to be a part of that camaraderie.

Lolo Spencer:

Yeah. Yeah. Exactly. Exactly.

Erin Hawley:

It's amazing. If I was on set, I'd be like, I'm in Starbucks right now. Yes.

Lolo Spencer:

Yes. Exactly. No. There was one time we were waiting to go on set, which is, you know, a normal thing to do, And I was like, yo, I want Starbucks. And so, me and my friend who, helps with, he's basically my aide right now. We were like, yo, let's try and find the Starbucks. And so one of the PAs overheard us and was like, oh, you want me to walk you to Starbucks? Like, yeah, walk us to Starbucks. And then one of my other castmates was just, like, chilling outside of her trailer, and she was like, oh, I wanna go to Starbucks.

Lolo Spencer:

I'm like, girl, come on. And so we all just went and got Starbucks because we were on board waiting for us to get called. So

Lily Newton:

That's amazing.

Lolo Spencer:

Yeah. It was great.

Erin Hawley:

So we did pivot a little bit to chat about, Live Solo. Yes. Can you tell us, how you started that? What was your your inspiration?

Lolo Spencer:

Yes. So Live Solo is my lifestyle brand dedicated to young adults with disabilities who are seeking independence and self empowerment. And it was an idea that I had always been, like, playing around with for a while, but really didn't put into action until 2020 COVID when we had nothing but time to just sit and think. So, I was just recognizing that at the time, I, you know, I had all this started because I had a YouTube channel. My YouTube channel is Sitting Pretty. And I just had recognized, like, with Sitting Pretty, it was only my perspective, my experiences, is my stories. And I felt like there should be a platform that expands disability beyond my own awareness, and give those people the opportunity. Because not everyone is necessarily comfortable in front of being in front of a camera and, like, talking to a screen or whatever.

Lolo Spencer:

So I was like, what can I do that would allow people to create more community? So I thought about this lifestyle brand and, listen, I have a whole 5 year, 10 year, like, idea for it. And so it started off as an online blog first, and I was able to gather a bunch of people who wanted to write for Live Solo and share their experiences and what they've gone through with their particular disabilities. But the point of it was to be able to provide solutions around lifestyle experiences. Right? I feel like with disability, there's so much out there for our medical needs, but not enough about our lifestyle needs. You know, how do we dress? Where do we go to have fun? How do we travel? What are the ways to go navigate restaurants or whatever the case is? Like, we're nobody's talking about it. And so I wanted to provide an opportunity for that. So we got writers with, severe food allergies, which I did not know classified as a disability, but definitely does, Severe food allergies, ADHD, CP, EDS, blindness. I'm trying to think of everybody that's contributed.

Lolo Spencer:

Is someone who's playing basketball? I can't remember. There's just so many people. But the point is is that it's beyond just my personal experience. So it started off as an online blog and now has transitioned that we didn't quite have the, same that we didn't quite have the same opportunity to do in the form of an online blog. So that is available. All of the issues are on our website, livesolo.co. And, yeah, it was it's really dope. I'm really excited about it and and where I plan to take it.

Lily Newton:

Such I just love what you said about sharing multiple perspectives. Like, that's such a it's so necessary. And, like, cute style to show off and, like, fun stuff. Like, cute style to show off

Erin Hawley:

and, like

Lily Newton:

Weird. Fun stuff. Like, that's so great and, actually, transitions us so beautifully into the next section of this interview because we this is an Easterseals podcast, so we like to talk about the Easterseals pillars, which are education, employment, transportation, community, and health care. And I always like to start with community because it's so necessary. And I mean, you're doing it. You're building community there. That's sharing those stories and creating a place where people I mean, even just reading that digital magazine like that will it feels so good to be a part of something, and whether that's as a reader or someone who's creating their own materials. I think that's just so incredible what you're doing.

Lily Newton:

And, you know, we've talked about it a little bit, but what what kind of role do you think community plays in your life and that what how did that inspire you to decide to do this?

Lolo Spencer:

You know, community for me is everything, even in my personal life. Like, I I've lived in LA almost 20 years. Yes. Almost 20 years. And everywhere I've lived, I built community around me. Like, even right now, there was a time in my, apartment where my best friend was living on the 6th floor. My really good friend, Wes Hamilton, I'm sure you guys know who he is, He was living on the 5th floor. Currently, my sister lives in the building over.

Lolo Spencer:

Like, we just it's always community. It's so many, it's just so important to have. And so I really wanted to be sure that I was able to create kind of the same experiences that I get to have on a personal level to the community of people with disabilities as well. Because that's the one thing that I really know I'm good at is bringing people together. And I wanted to use that strength in a positive way and in a way that felt like it was serving people beyond who I know personally. So yeah. So so Live Solo is my thing, and I can't wait till we expand into, like, in person events and activities and that kind of thing because because even during COVID, I was hosting Zoom parties, and it was lit. Like, people were turning up.

Lolo Spencer:

So

Lily Newton:

That's so cool that you I mean, you're a community builder. That's such a Yeah. Like, incredible skill to have. And and, like, when you have a good community builder in your life, it's so one of my best friends is a therapist and just is a phenomenal community builder. And, like, I feel so lucky to have her in my life because the way she brings people together, it sounds to me like you're very similar to her in that just like some people have a skill of bringing people from different communities together and creating a bigger community. Like

Erin Hawley:

Yeah.

Lily Newton:

That is a skill, like, really amazing. And I think about, you know, the start of this interview, you talking about you and Jillian making that video right when you really needed it and, like, having someone who just gets it. Like, that that aspect of community cannot be valued high enough. I mean, that's why we made this podcast was to have a place where we can just talk to people who get it.

Lolo Spencer:

Yes. Exactly. Exactly. It's it's it's such a beautiful experience to have when you do have community. And I know a lot of times disability can feel very isolating in our experiences, in what we're feeling and what we're going through. So I want to ultimately have Live Solo be a place where people don't even if they might be isolated in real life for whatever reason, there's somewhere online that they can feel community. And like I said, when we get to the point of doing stuff in person, like, there's somewhere for them to go where people get it. Because a lot of times, our family, our friends, they don't get it.

Lolo Spencer:

It's not their fault for not getting it because nobody's ever educated on disability the way that we're educated on so many other things. But because they're not educated in it, it's hard to feel fully connected in a lot of ways. So when you are around people who get it, it makes all the difference.

Erin Hawley:

Totally. And I think, like, communities help a lot with mental health as well. What is Yeah. In speaking about health, have you have you been how's your experience in health care? Do you find it, like, accessible? I'm sure there's a lot of stories you can share.

Erin Hawley:

Yeah. Gina.

Lolo Spencer:

Any tales from my facial, what's How do I say this in a way that feels, I don't know, the health care system, I think, specifically in the states. I mean, obviously, because I haven't needed care outside of the states. The more you learn about it, the more detrimental it feels when you have a medical condition. Mhmm. Because of the proven stuff that has come out about big pharma and that it being all about money and not really wanting to heal or care for people. And in my case, not only because I have a disability, but I'm also a black woman, which statistics have shown that our pain is not revered as serious as when it's a white woman's pain. And a lot of us get misdiagnosed with things, because no one wants to take the time out to care for us. And I had a recent experience, because I'm going through the process of figuring out what my true diagnosis is again, which has unraveled a lot of emotions.

Lolo Spencer:

A lot of emotions, a lot of mental things that I have to do to keep my mental health straight. And the doctor was just very dismissive. It was very like there's no motivation to truly figure something out. Mhmm. And that's the part that frustrates me about the health care system. And it's this constant extreme challenge to get services that we need to where it's like, how is it that a doctor's note isn't enough? But we also have to prove how much money we have in our bank or get 4 different types of doctor's notes. And it's just this constant, okay. You got something wrong.

Lolo Spencer:

Here goes the pill. Mhmm. It's like, wait a minute. Before you throw this at me, are we sure this is what's really going on? Because, again, again, it's it's just pure dismissiveness. So I'm not the biggest fan of the health care system. It shouldn't be it should not take fucking weeks to get our wheelchairs fixed for those who are wheelchair users. I specifically remember one time my wheelchair broke and I you know, the wheelchair repairman came to my house and, you know, he was just like, how did your wheelchair break? And I was just like, to be completely honest, I don't know. You know, I have my 9 to 5 job.

Lolo Spencer:

I'm taking the bus. You know? Maybe I, like, hit a curb too hard or something like that. Like, I don't know. It's just what it is. And he was just like, wait. You take your wheelchair outside every day? And I said, yes. So I have to get to work. And he was like, oh, that's probably why your wheelchair keeps breaking down.

Lolo Spencer:

I was like, I'm not I'm not understanding. And he was like, well, wheelchairs aren't designed to go outside. And I was like, what? What? So he was like, so technically, you're using your wheelchair way more than it's designed to actually handle. And I'm like, what? What? And I'm like, so these devices from inception are being designed for us to not have a life outside of our front doors. Who came up with that? Who's telling people to do this?

Erin Hawley:

Mhmm. Why?

Lolo Spencer:

Literally, what the fuck and why? Like and that's when I knew, like, oh, this shit is fucked from, like, inception. We've got to do something to change this. And then it took weeks for the chair to even get fixed. I had to get a rental. That cost so much money to get the rental for as long as it took for me to get the work. It was just and then you gotta get a referral from the doctor for fucking what? Why does the doctor have to say she needs her chair fixed? Just let me get my chair fixed. It's broken, period. End of discussion.

Lolo Spencer:

Like, you don't need to fucking get a mechanic to sign off on you getting an oil change. You just go get your oil changed. I I I try not to get upset about the health care system, but it's that I really wish alternative medicine was more welcomed, in this country as a primary form of care that is covered by insurance. However, it's not. So that's a whole other tangent for another day. But yes.

Lily Newton:

Yeah. No. I mean, it's it's really hard. And, I mean, working at Easterseals, that's something that a lot of people who are participants talk about, like, just inability to find the equipment they need and, you know, Easterseals is just one nonprofit. They can't. We're doing the best we can, but it's it's ridiculous how many people are really not given the supplies they need to thrive. And, you know, you know, hearing you say that. And sometimes when given are then told that, well, it's actually not designed for you to leave your house, which what what the heck is that? Like, oh, it's not designed for you to live your life? That's

Lolo Spencer:

ridiculous. Literally. Literally.

Lily Newton:

And, also, wanted to say so hurt on the, like, mental gymnastics of trying to keep yourself feeling okay while figuring out a diagnosis. I I mean, mixed race person getting an autism diagnosis was ridiculously impossible because Yeah. Every time I go into the doctor my whole childhood, it was just like, well, try this anti depressant. Try this thing. Try this. And now looking back, you know, I look at my whole childhood, and it's like, it was really, really obvious, actually. Like, I'm not even that high masking. Like, it was really, really obvious

Erin Hawley:

if

Lily Newton:

anyone had taken more than 30 seconds. Like, and now I'm in the process of getting an EDS diagnosis, and I'm like, I have an appointment that I'm really excited for, but also deep down, I'm, like, really scared because I know how often those appointments end in, like, walking in being dismissed by often, like, an older white man who was never related to anything I've ever done. And, like, just just ridiculous how, like, you know, you're going to get a diagnosis, which is already its own, like, feet to climb and then to have to deal with bigotry in there. It's just ridiculous, and it is a real shame. And I I do hope that I mean, we don't have to solve the problem on this podcast, luckily, but I Yeah. I'm gonna suggest a a solution. Would hope it would be that we need more disabled doctors, and that begins with Yeah. Med schools being better about, acceptance rates and being accessible.

Lily Newton:

My Yeah. Older sister is a doctor, and she's phenomenal and has worked really hard to, take my experience as her disabled younger sister and become a better doctor in that. And she's fighting against systems, and it's really hard. And when we talk about her experience in medical school, she'll often bring up that, like, she was asked to do things that were not healthy. And so if someone can't necessarily like, just staying up for 48 hours for crazy rotations or for wild rotations And, like, medical school has got to change to be accommodating because we this country so desperately needs disabled health care workers. There's no there's no amount of education for nondisabled people, in my mind at least, that will replace just having a health care system that employs disabled people because a disabled doctor is gonna understand us better than any any non disabled person who's educated.

Lolo Spencer:

100%. And I think when the health care system changes its motivation from money to actually getting to the root cause of something and being open to new ways of figuring that out outside of the textbook boxes that they've learned, I think we would all be I think if alternative medical practitioners were able to work hand in hand with traditional medical practitioners and someone would be like, god. I can't I can't figure this out. Maybe I need to send you to this holistic practitioner and have them look at you. I think we would all be in a much healthier healthier state. Because the things that I've learned now I'm really about to go on with tangent. The things that I've learned about certain alternative medicines, a lot of people are not privy to. Like, have you guys ever heard of grounding or earthing? Okay.

Lolo Spencer:

Blew my mind. My dad What is that? My dad taught me about this. So, basically and when you guys Google it, look it up. I promise you. They basically said that there's these, like, doctors who learned about this. If you have any form of, like, chronic pain or chronic inflammation, a lot of our diseases that people are experiencing from, you know, rheumatoid arthritis to chronic pain to menstrual cramps, whatever it is, it's all rooted in inflammation. So they say if you put your bare feet in the grass or on the ground, in the sand, anywhere where it's natural stuff happening from the earth for a minimum 30 minutes every day, your inflammation will drop drastically. Pain will drop drastically.

Lolo Spencer:

Like, it's been proven. And I think about people with disabilities all the time, and I haven't really been the one that, like, super advocates for this because I'm still learning. Right? So let me preface this to say, I'm still learning this. So please but knowing that you could put your feet in the grass for 30 minutes every day and it being able to change your inflammation in your body is fascinating. It literally has helped me with my insomnia that I was suffering from a few months ago. Literally, I was able to start going to sleep way more peacefully. Now I can sleep without medication. And so it's fascinating when you learn about these things, and it's not talked about.

Lolo Spencer:

You don't go to a doctor's office and and or even just something as simple as changing your diet to being vegan and how much changing your diet has helped people fight cancer without chemo has helped people. Now I'm not saying, like, the medical system doesn't have a place because it definitely has a place. Like, I'm totally for taking medications if you really, really need it. But have we explored other things? You know? And so I just highly recommend everybody just look into it because it's completely free to put your feet

Erin Hawley:

in the grass. That's all. It's it's interesting because

Lily Newton:

it kinda ties back into community in that, like, information sharing kind of a way. Because when we live you know, when you think about, like, people before, like, I don't know what the before is, but when people lived in tighter communities where you could have these conversations and, like, about what in your environment is causing problems and what we're seeing, like, in your neighborhood able to do. I think it's really important because, like, yeah, whether it's grounding or like the thing that I'm keep thinking of is that I tried that. I don't know if you guys have seen it, but the TikTok trend about tart cherry juice, which is about drinking tart cherry juice before bed, apparently, is, like, really helpful for winding down. And, it's the way I saw it on TikTok was talking about, like, people who don't do very well with melatonin, and I don't do well with melatonin. It makes me feel terrible. So I but I have a hard time falling asleep. And, you know, I'll be honest.

Lily Newton:

When I saw the tart cherry juice thing, I was like, this is a TikTok trend. It's placebo. Like, this is not going to work. Yeah. Then one of my friends tried it and was like, hey. Like, I want you to actually try this. And I I swear by it now, and I've gotten, like, 4 or 5 other friends on it because it has really helped my sleep. And it's like, you know, I don't need to necessarily go, like, rewrite the textbooks.

Lily Newton:

Right. Reduces the answer. But at this point in time, like, it's you know, we we have and all full circle brings us to, like, your brand, Live Solo, having, like, a digital magazine, having these methods where especially disabled people can share our information with each other, I think, is so important. And, you know, we've seen on TikTok how many people I mean, the autistic community, how many people were struggling through a million diagnoses but couldn't figure out why none of these medications made them feel better? And then in 2020, when we're all locked inside our homes, start talking about like, hey, I actually am autistic. I found this out. And then suddenly we've got all these people self diagnosing, which I I know that there are people who are, like, self diagnosis is the worst. I'm a huge fan. I think it's really important.

Erin Hawley:

We Yeah.

Lily Newton:

When you can find things out in community and figure out, like, hey, like, I've my experiences are coming from other people's lived experience. I think that's really how we, like, heal together and how we create what you're talking about, these medical practices that aren't just a 20 minute appointment in a cold sterile room where we're not looking at any of the external factors that have affected a person.

Lolo Spencer:

Exactly. Exactly. 100,000%. And even you bringing up, you about to go through an EDS diagnosis for the May issue of Live Solo, one of our writers, talks about her journey, with her mother, getting her mother an EDS diagnosis from a physician who also has EDS. Wow. So you got to check that one out.

Lily Newton:

I will for sure. Yeah. Oh, my gosh. When things are done by and for within the community, it's so incredible. We last season, we had Caitlin Partlow, who is an autistic content creator who also is an autism therapist. And it's like, oh man, an autistic person doing autism therapy, a person with EDS diagnosing EDS, like, this is the money. This is where it's at. And, you know, I do think we're on a path.

Lily Newton:

Like, we're getting closer. Even the fact that we have space like this to, like, have conversations like this, I think is important. And I do feel that in, you know, whether it's in my lifetime or not, we're going to have a world that is a lot more inclusive because when we have disabled doctors and a world where disabled people can get around easily without worrying about their wheelchairs being broken on a plane

Erin Hawley:

Yes.

Lolo Spencer:

Like Yeah.

Lily Newton:

The world will be better.

Lolo Spencer:

Exactly that. Exactly that.

Lily Newton:

Like, think of how much information the world is missing out on because of the inaccessibility, Because disabled people are smart, and we are in

Lolo Spencer:

a hurry. Because we have to be. We have to be. And and I don't even think the inaccessibility is more the issue. It's the attitude around disability that ultimately ends up being the issue as to why people aren't open to learning or open to discovering or, investigating about new ways of doing things or new ways to design something. It's because a lot of people are very scared to to be introduced to disability because of the stereotypes that have been surrounded around the community in general. So, ultimately, inaccessibility is one thing too, but I think, ultimately, the attitude around being involved or inclusive to people with disabilities is the thing that needs to change the most.

Lily Newton:

I think that's super correct and just, like, you know, goes with the thesis of why we made this podcast.

Lolo Spencer:

Yes. I love it.

Lily Newton:

From the work you're doing as an actress in, you know, changing representation on screen, not only as a disabled woman, but as a Black disabled woman, you are breaking down barriers of representation on screen. So the work you're doing as an actress, the work you're doing as the creator and founder of this brand, like, it's people like you that are going to change those attitudes. And, I am so grateful you came on this podcast. This has been such a wonderful episode recording. Yes. I have a anything before we close?

Erin Hawley:

No. I just I love having it on.

Lolo Spencer:

Thank you.

Erin Hawley:

And I

Erin Hawley:

hope that we stay in touch because I had a great time, and I really appreciate the work that you've done. I did follow you since you've been on your YouTube channel. Oh, yay. So, like, I'm so happy I can hear you.

Lolo Spencer:

Yes. Thank you. Thank you so much. And you know what I would love to do? I would love to ask one of my writers to interview y'all, and we do, like, a feature in Live Solo about the podcast.

Lily Newton:

We'd love to

Erin Hawley:

do that.

Lolo Spencer:

Wouldn't that be amazing? Incredible.

Lily Newton:

That would be so amazing, and we love a collaboration.

Erin Hawley:

And We

Lily Newton:

love a collaboration. And we Lola, we're so as Easterseals representatives, we're so appreciative of all of the work you do to help us make our mission come true. Lola has participated in things with our affiliate at Easterseals Southern California. And just overall, your advocacy knows no bounds, and we are so excited to have you in our community because as we said, community is everything.

Lolo Spencer:

That's it. That's it. Thank you y'all so much. This was a blast. I had a great time.

Lily Newton:

And listeners, we will see you next time for 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 through 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.

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