Transcript

Lily:

Hey listeners. Welcome back to another episode of Everything You Know About Disability is Wrong. We have a very exciting guest today and the conversation we had is just incredible. This is another guest that was a dream to have on and I'm so grateful. Without further ado, today's incredible guest is Jillian Mercado. Actress, model, advocate, an all around just cool person. Truly it was a dream to get to interview her and talk and she's just so cool and so nice and I feel so lucky to gotten to spend an hour just gabbing together, the three of us.

Erin:

Totally. I've been following her a lot on social media since forever and just to be able to chat with her ... I can't. I was so hyped. Especially as a woman who also has muscular dystrophy, who's also Latina, I was like, yes, this is my person.

Lily:

Yes. I feel like getting to listen to the two of you talk was just such a joy, and I really think that episodes like this have the power to really change what people's perceptions are because I think that muscular dystrophy has a lot of very outdated perceptions in the public eye, and I am really glad that people get to see ... Especially you and Jillian are two of the coolest people I know. So just giving muscular dystrophy a very cool image.

Erin:

Yes. We're not how we're depicted in media.

Lily:

Absolutely.

Erin:

So this is all about that. It's important to challenge those views because they're harmful and now we're just changing that with this podcast.

Lily:

Heck yeah.

Erin:

I can't believe I get to do this for my job. It's incredible.

Lily:

I know. Truly so incredible. It feels unreal. And I hope our listeners feel the same way listening to this episode. It's really exciting. Let's get into it.

(singing)

Erin:

All right. Hello everyone. Welcome to another episode of Everything You Know About Disability Is Wrong. And today we're joined by Jillian Mercado. She's an activist, she's an actor, and just the best person and I'm so excited to have you here. So welcome.

Jillian Mercado:

Thank you for having me. I'm so excited to be here as well and to talk about all things, everything. So I'm ready. Hit me.

Lily:

Yes.

Erin:

Awesome.

Lily:

I'm so excited you're here. We got to do a little pre-call a couple of weeks ago. Just get to know each other. I don't have the best social cues, but I will say I felt like we were instant besties, so it was great. I was just excited.

Jillian Mercado:

I agree. I would say the same. Honestly, I wish that was recorded because it was such a good conversation, but we're going to do even a better conversation now.

Erin:

Totally. Absolutely. We like to start the show with a question. And since our show is Everything You Know About Disability Is Wrong, we want to know what do people get wrong about you?

Jillian Mercado:

Oh, man. Probably my existence. Just last week I was in Mexico City and there was a lot of people who were surprised that I knew Spanish because I was talking in Spanish and a lot of the comments were like, "Wow. You speak so eloquently." And as much as I really wanted to take that as a amazing, awesome thing because my mom always loves to say, "You don't speak enough Spanish," which is true. I don't. There was a lot of ableist undertones of that comment that I could not shake off. So I think our existence as far as just living and just being is so sometimes deep-rooted in ableist and stereotypes that it's hard to just live. Just exist and be. Because there's a lot of people that still have this notion that we can't live by ourselves, we can't have a social life, we can't do all of these things that just are so basic that I wish that people understood that we're as human as everyone else.

Lily:

Yeah. It feels like people just can't help themselves but make their assumptions known and usually people's assumptions are entirely wrong.

Jillian Mercado:

Yeah. Half of me, I don't blame them because of the unfortunate representation that has been out in the media or just ... Also, it has to do with healthcare. Not getting enough access to healthcare. It has to do with accessibility. Not being able to ... It was really tough, at least for me to move around in Mexico City because the streets were so uneven and there were so many stairs. Probably 50 times more stairs than there is in California where I live. So it was really hard. So sometimes I do understand where people see me in places and they're so amazed and they're so shocked and it's a whole hoopla because ... I feel like if I were to have lived in Mexico City, it would've been really incredibly hard for me to do anything basic. Even go to the grocery store there were steps. So sometimes I understand it, but I feel like nowadays because of social media and just the internet being so accessible in certain places, that having that ableist mindset, especially with a grown adult, it's hard for me to sympathize.

Lily:

No. Totally. That makes complete sense. You can understand why people have the assumptions they do, but it doesn't make it less harmful to have to hear. And especially, that's something I've noticed. Because the internet is so accessible in some places, but some people, it's so inaccessible for, I feel like sometimes I end up in microcosms of people where I feel like everyone is on the same page. We're all learning about ableism at the same time, and then you end up in a new setting and it's like, oh wait, there's whole sections of the population that still think that disabled people can't exist outside of a nursing home.

Jillian Mercado:

Actually-

Erin:

Yeah, and-

Jillian Mercado:

I'm sorry. Go ahead Erin.

Erin:

Go ahead. Go ahead. You go.

Jillian Mercado:

I was just going to add on to that. My friend just reminded me this one time where I was heading towards ... I'm laughing because it's ridiculous. But I was heading towards an event. It was a really star-studded event and all these people who if I started naming people, you're like, oh my God, that's crazy that they were there. And so I was wearing a gown. Let me just give you a picture. I was wearing a bright blue ruffle gown. And I remember getting into an Uber, which took 45 minutes to get to me, and the guy literally asked me if I was going ... He was like, "Wow. You're dressed so fancy for going to the hospital." And I was like, "Excuse me?" And he was like, "You're not going to ..." It just got worse and worse and worse.

And at first I thought it was a joke, but he was very serious. And I'm like, "I'm going to ... What?" Who dresses this ... It was just the complete disconnect and I'm like, wow, people really think that the only other places we do go to are hospitals or nursing homes or anything medical for that matter, and that really puts so many things in perspective. And every day it humbles me thinking about that because there's so much work to be done. But also I feel like people who have disabilities have been in these streets since the beginning of time, so there's no excuse for having that comment.

Erin:

No.

Jillian Mercado:

So, yeah.

Erin:

The other day I went out to a restaurant and some guy I don't know said, "It's so great that you're out of the house." I'm like, "Yeah, not really. I hate going outside." I get comments like that all the time and I don't understand.

Jillian Mercado:

There were times where I was really frustrated when I was younger and I would rebel and I'd get really mad. And nowadays when I get comments like that ... Because I as well get comments like that constantly. If they're like, "Oh wow, that's amazing that you're here," I'm like, "Oh my God, that's amazing that you're here and that we are here together in the same place." And they're so ... I'm like, yeah, do you see how dumb that sounded out loud? Yeah. It's pretty ridiculous if you ask me.

Erin:

That's a great response.

Jillian Mercado:

Hit them with the same energy.

Erin:

My energy is just like, yeah.

Jillian Mercado:

Yeah. Because I feel like if anybody would say that to anybody else who may not have a visible disability, they would be like, right. Cool.

Lily:

Yeah. I think having a non-apparent disability, I think if someone said that to me, I'd be like, "Is this a threat? Do you know something about me? Why would you comment on that?" And I think that that's such a weird thing of ... I got to hypothesize that they think or it just feels great for them to say something like that. They think it's going to be the best thing you've ever heard. Again, going back on people's assumptions just take over, I feel like use your context clues. Where did all of your context clues go?

Jillian Mercado:

Out the window.

Lily:

It's wild.

Jillian Mercado:

And sometimes I sympathize and sometimes I overanalyze. And I remember my therapist being like, "Stop overworking. You're not responsible for other people's minds or thoughts. So if it feels offensive, it was offensive. No matter if it was well intended, no matter if they wanted to make themselves feel good about themselves, but at the end of the day, you're as human as they are, so that comment wouldn't have gone okay with anybody else so what makes you different?" And I'm like, "Oh my God, you're so right. This is why I pay you the big bucks."

Lily:

That's a great therapist.

Jillian Mercado:

Yeah, exactly.

Lily:

Yeah, I love that. I think that's a conversation that's become more mainstream about a lot of different intersectional identities. Just this idea of like, oh, we don't have to do the labor of rationalizing why these people have these outdated opinions. That's a great therapist.

Jillian Mercado:

Yeah. I choose to be an activist in my community. I don't have to. It's not a contract that I signed when I was two years old to be the teacher of all teachers. I do it because I want to. It's a thing that I agreed on with myself. Like, oh, if I'm in a situation where I can teach, I will. But it doesn't mean I have to. It doesn't mean that any person who has a disability needs to be an activist. And I feel like sometimes even people in our own community get frustrated with other people who also have disabilities, no matter if it's invisible or visible that we need to talk about it, that we should talk about it. And not everyone has that energy, strength, or mindset to really take on a very, very, very, very, very, very taxing job.

Erin:

Yeah. And there's that saying that existence is resistance. And simply just living, you're doing that. I used to be really involved heavily in disability advocacy, and I still am, especially at work, but I can't spend time after work digging through social media and being a disability advocate that way anymore because it's so mentally exhausting because you deal with ableism every day and just to see it again online is a lot. And it really helps my mental health to step back. And that isn't to say we have to be silent all the time and we should speak out, but not ... Yeah.

Lily:

I do think that there is a feeling that if you have a disability, you're automatically thrust into being an activist simply because in some ways when you live in a non-accessible world, you simply have to advocate for yourself. But I think that that's crucial to allow yourself to have time when you're unplugged or not doing that. Especially, both Erin and Jillian, the work you do. Jillian, your activism work and that you're constantly talking about things and working for better representation. Erin, you work at a disability service nonprofit. This is your 40 plus hours a week that you're doing this all the time. It could be really easy to feel like, oh, I need to do this outside of work too, but then when do you rest? And rest is so important.

Jillian Mercado:

Yeah, exactly.

Erin:

If you don't rest, then you can't do the work.

Jillian Mercado:

Yeah. It's like sleeping. We have to sleep at night because that's a way of our body resetting and healing. I feel like if we don't have that disconnect of ... Like for example, my trip to Mexico was essentially a vacation or it was supposed to be a vacation, but then I find myself in these little pocket holes of let's go back to work and advocate because these people really are not understanding it. Me being outside, like you said Erin, it's already a form of activism. Just doing things that are maybe not the usual of someone who has a visible disability. And I'm squinting my face even hard to say out loud. But just existing, I feel like it's already a form of activism and sometimes it's just hard to switch off that ... Because then it just eats inside of you.

For me, personally speaking, if I don't say something at the moment or if I'm not sarcastic at the moment of the timing of ... I obviously pick my battles with people, but it eats me and I won't let it go. It'll just eat inside of me. And I'm like, oh, that would've been such a perfect moment of teaching for that person, which I'm working on. It's a difficult situation to be in, especially if you're like us, where we're very vocal on the indifferences that are out there currently and still the misrepresentation that people have continued to narrate about our lives.

Lily:

Yeah. I think that picking your battles and working on it is such a lifetime learning thing. Because I definitely relate to that where sometimes I'll think like, oh, this isn't worth it for me to try to educate this person, but then I'll say, oh, I want to save my energy and go about my day. But then the rest of the day I'm in my own head thinking, wow, I wish I would've said something to that person and wondering what they're going to say to someone else. It's really hard to balance that level of, is my own piece correcting and educating or is my own piece ignoring? And I don't think there's an answer to that. I think it's got to be a lifelong practice of finding when you need your own peace.

Jillian Mercado:

Yeah, exactly. And it's not like we can save everyone from this horror of ableist mindset, but I'm trying really hard. There's things that I don't even post them on social media that I live through every single day that I wish that there was a tiny little camera that was following me without the other person knowing that there's a camera because there's so many things that happen sometimes. And my sister, bless her heart, she's adorable. And she's like, "You should carry around a GoPro." On my chest on all the time. And I'm like, see, but that's the thing. I just don't want to. We shouldn't have to. In the heat of the moment, it's already such a shock value to me. I am 36 years old and there's still times where I'm just like, I can't even fathom what is currently happening right now to me at this moment now. Sometimes I really can't. And a quick example could be the other day, over a month ago, I went to New York and this person who takes the wheelchairs from the airplane to the below deck was gaslighting me of how to work my own chair. And I'm breathing because it's still so present in my mind. I just could not understand how he really thought that he could outdo me on my own assistive device. Essentially breaking my chair because it came to me broken. And I was telling him that I've been in a wheelchair for a very long time, and there's no way that if this was handled correctly, it wouldn't have gotten to me like this. To which he kept telling me of how many classes he took and how many courses you need to take to get this job and how he handles chairs and literally telling me step-by-step how he did it.

And I was like, those could all be true, but you still broke my chair. And the fact that you are telling me how to use my own chair is me coming to your home and giving you a tour to your own home. You're going to know your home more than I know because I don't live there. Same with my chair. My chair is part of my body, so you telling me how to handle my chair is pretty hilarious. But even moments like that, I was telling my sister and she's like, "Oh my God, that would've been such a great post." And I'm like, it's just so hard to know when these things happen because it doesn't happen 24/7. But the times that it does happen, I'm always just so taken back by it. Because it happens more than I like it to happen all the time, and it's always very shocking to me.

Lily:

Yeah. I'm sorry you dealt with that. Also just in an airline situation when it's so dangerous to fly knowing that these people are ... Airlines are damaging wheelchairs at a ridiculously unacceptable rate, and so that's wild. And I love the analogy of giving you a tour of your own home. I think that's really ... I hope that there's someone who's listening to this episode that's like, oh, I never thought of it like that. I should probably not be trying to educate people on their own experiences with their own equipment.

Jillian Mercado:

I do my best to try to give examples that it's so duh kind of a situation. And again, it's overworking and trying to make people who clearly have a good intention, but everything they're saying is really ableist to try to bring it back home. Let's just wind it back a little bit because I'm just going to show you how ridiculous this sounds. Again, making them feel way more comfortable than I do, but I always try to remember that representation, whether that's in the media or just out in the streets are so not great that I'm giving the benefit of the doubt. I am just like, oh, maybe you just haven't encountered a lot of people like myself. Let's just go with that for now, and hopefully nobody else ever has to go through this ever because this is traumatizing in so many levels.

Erin:

Yeah. Like you said before, I think a lot of the intention of the things people say is not mean. They're trying to be nice, but it still has a negative impact on us and we can't control how we feel.

Jillian Mercado:

Yeah, exactly.

Erin:

And it adds to ableism. It adds to misconceptions.

Jillian Mercado:

Yeah, exactly.

Lily:

Yeah. And that's just so much to hold to the ... That's part of the reason we wanted to make this podcast was having a space where we don't necessarily have to be like, oh, and I get why they said that. I get it. But we can also just be like, yeah, but it's still super F'd up. It's still messed up.

Jillian Mercado:

At the end of the day, no matter how well intended people can be, which we hold space for that too, there's also space for being really mad and pissed and just annoyed by just comments that ... My mom always told me to think before you talk and a lot of people don't. But people think that we're just some forum on Reddit where it's not a real person actually computing what you're saying. Like, yes, I am a real person. I am a human. We have the pretty much same anatomy inside, which means that what you're saying, I am taking home. Just as a lesson to the world, just be careful what you say out loud. That's it. Or even what you type on social media, because there is another person who is reading that.

Lily:

Yeah. I was just going to bring up that. I want to talk about your career and things as well, but before we get to that, how has your interactions with social media changed as your career has evolved, as your platform's gotten bigger, you have more eyes on you? How do you deal with that, manage that? I'd imagine that the number of ableist comments becomes somewhat exponential when you have ... I think that there's probably some people who just see famous disabled person, I can say whatever I want. And how have you handled that? How do you protect your peace online?

Jillian Mercado:

I think at the beginning it was a little tougher. I remember once my mom calling me because she read a comment that somebody posted in Spanish and it was just really mean, extremely mean and she called me crying. And she's like, "Why would anybody say that about you? I don't understand. Why are people so mean?" And I started laughing because my first reaction to anything is to laugh. We're working on this. I remember being like, "Ma, they don't know who I am at all. They don't know who I am and they're just people who are unfortunately really sad and lonely and they need to project these insecurities that they have to me because I'm pretty sure they wouldn't tell me this in person. I'm 100% sure these comments would not be in my face if I was actually there." So there's definitely a disassociation of person and profile, I guess, or something like that.

So at first I used to take it to heart. I think now it's almost ... I think people with disabilities find humor in everything, and that's how we've been able to survive. It's like our surviving mechanism is to find humor in the tiniest things. So now the way I see it is, well, if you leave a really mean comment, I automatically delete it and block the person. I don't even try to message them. Unless there's a learning experience for the viewer, then I'll respond. But if it's something just like this person just had a bad day, I'm just going to delete it and block and that's it. And then the end. There's other times where I leave it, or especially if it's like a personal DM and not a comment, I do read it just to see what the kids are talking about these days. And then I go, "Wow. This person really spent 10 minutes to search my name, to type with their fingers or to type or whatever to leave a message, however they're leaving messages. And that was a time of their life that I was a part of. That makes me feel so special and so nice. That's so sweet of you to spend that time. For me? I love it. Thank you." And then I keep moving on.

Lily:

I think that's a really great mindset to have. And also just that reminder of we got finite hours here and you're spending it ... There's fresh air to breathe and fun memories to make with your friends. There's delicious meals to eat in this life, and you're choosing to leave hateful comments. And it makes me sad for the people who are that lonely or what's happened in their life that led to that, but it's such ... What you said that you don't think people would say that in person. I think that obviously there's still ableist comments in person, but there's something about behind the keyboard where people just say things that would never come out of their mouths. So I think that's great. I also am glad you brought up your mom calling and being hurt by it because I think that sometimes people ... Especially when commenting on someone with a certain level of status, whether it's celebrity, whatever, they think there's a certain disconnect of this isn't a real person, but their family members have to see that. Your mom had to read that mean comment. And I don't think that person thought about that. That's truly terrible.

Jillian Mercado:

They don't even think about themselves. That's the sad part. And that's the heartbreaking part for me. As much as my first reaction is to laugh or whatever, because a very empathetic person, I do think about what would've gotten to the point of that person actually writing that? I go back into the story. What's the story behind the message? But for me, deleting and blocking the person, I do think about everybody else's who's reading it. I think about me at eight years old if I had social media and I was finding some hope or inspiration or just any sign of existing in this world. I do think about that person reading that and how would they feel if they saw my successes and the things that I've done. And then reading that comment and being like, well, this is a sign that I should never. And it takes that tiny little, teeny little comment to really discourage a person.

And I know that from personal experience because it was very hard for me to find some glimmer of hope or a sign to tell me that this is something that I really want to do in my life. And it's even harder when you're growing up in a place or a town or a country or world for that matter that there's a lot of ableist everything everywhere. It's hard to grasp onto the hope, especially if there's nothing to hold onto. So you're holding onto yourself for dear life. So I think about that every time I see these comments, and that's why I don't even bother sometimes to reply or to teach this person a lesson because I don't got time for that. But also time is money and I don't want that person to see that. Not to say that I'm blinding everyone or removing the hardship that it does go into being someone who has a disability, but I feel like we have a lot of that already everywhere. So I'm not doing a disservice to that.

Lily:

Yeah. Absolutely.

Jillian Mercado:

So I do my best to have my social media be as safe a space as possible.

Lily:

Yeah. I was just going to say that. I think that's one of the sweetest and most care filled things I've ever heard. Explanation of block and delete. Of that level of you don't know who's seeing it and who's seeing themselves or what they can be in you. And keeping that space safe for them I think is really beautiful. I'm glad you said that, and I think that's a really wonderful way to curate what you said, a safe space online. I think that's wonderful.

Well, we deal with ableism every day so transitioning away from that a little bit. So you got your start in your career, correct me if I'm wrong, in fashion and modeling. Correct? What got you interested in fashion? What was that trajectory like?

Jillian Mercado:

I feel like this podcast will just be about my mom, because my mom was the one who introduced me to fashion. Actually my parents. Let me give my dad a little two cents there. They both introduced me to fashion without knowing that it was fashion. And I don't think I knew what fashion was until I was probably in middle school maybe. My dad would bring my mom these authentic crocodile shoes and snake leather stich or whatever. I've been a vegetarian for nine years now so even saying that I'm cringe about it. I was so amazed that this was even a thing. I was asking all the questions. I'm like, "How do they do this? Wait, this is amazing design." Blah, blah, blah, blah. And my mom, she actually told me this a couple of months ago, which I didn't know. So keep asking your parents questions because you will find out new things about yourself that you didn't even know.

I was almost born in a factory. In a clothing factory. My mom hid her pregnancy from her boss till it was too obvious. And then she was like, "I quit my job, and a week later you were born." And I was like, "Wait, what? You are a mad woman. That's absolutely wild. The fact that you kept sewing clothes in this factory until I almost popped out." She was born in it. In fashion. And then I remember applying for colleges in high school and my mom being like, "You have the privilege of picking whatever you're happiest in. Whatever career you choose we will obviously be supportive, but make sure that you're actually excited for this. Don't do it for us. Don't do it for the trend. Do it for yourself because you're the one that's going to be stuck with it every single morning. You're the one that's going to have to find motivation to be there."

And fortunately enough, we immigrated from Dominican Republic to make it easier for myself and my two sisters, and that meant that we could do whatever we wanted. It's a power to have and a privilege for that matter. I was like, "I want to do something in fashion, but I don't know what." She's like, "That's a great direction. Just go to a fashion school and figure it out." And that's literally what I did. I went to FIT in New York and spent four years figuring out what I wanted to do and landed in a modeling ... My first modeling job was a worldwide campaign, and everything exploded as far as representation for me went. Because I wasn't seeing myself in anything that I love doing. And I was like, how can a place that I feel like home be so discouraging to see that nobody looks like me in it? So that motivated be even harder. I'm also very stubborn. Maybe it has to do with my Taurus sign. But I'm super, super stubborn, so I needed to prove to myself in the world that this was possible. Because I saw it when I closed my eyes, so I don't understand why I didn't see it when I opened my eyes. So I made it a mission of myself to change that narrative as much as I could. And that landing me my worldwide campaign and being like, well, I really wanted to be an editor for a magazine to hire people like myself. But the world was like, you're the person that you wanted to hire. It was a really cheesy moment, but I was like, I'm going to go for this. And then, yeah. So my first job was 2014 and I haven't stopped since. And then four years ago I landed my first acting job, and that was also a moment of, oh my God, also disabled people are not really represented great on television. Awesome. Another house to bust open and blow up. And here we are.

Lily:

So much to say about that. One, moms rock. This is a recurring theme on this podcast. We love moms. And so that's wonderful. I love that. I love the almost born in it and then just realizing it's your home and you've got to clean up your home if it's not looking like you want it to. I really love that. And I think that you certainly have been one of the dominant leaders of changing the way we think about who can be a model and just ... I think the work you've done has been incredible. And I think it's clear that it's come from following what feels like home. Following what feels right. I think that that's a really empowering thing for our listeners to hear that you as an activist are doing a lot of what "sometimes people think they should be doing". But you ended up there not because you felt like you should, but because it felt real. It felt like home. It felt like what you were supposed to be doing. And I think that that's a guiding light for people to find those places that even if maybe it doesn't look like you're supposed to be there yet, trust the feeling. And if you think you're supposed to be there, you can be part of making space for others to be there too.

Jillian Mercado:

Yeah. Intuition's always right. As a broad human, follow your intuition. She will never fail. She will always guide you. Even when you go against it ... And I'm using a pronoun on energy and the universe, but let's be real.

Lily:

I think intuition uses she/her. She's probably a Taurus too. I'm also a Taurus.

Jillian Mercado:

No way. That's awesome. But intuition is always right and I feel like there's a lot of things that people want to put against us. And I'm talking living as a person who's a female identifying in this world's already hard enough. But also having a disability on top of that sometimes can feel taxing, can feel a lot of weight. And I feel like sometimes I use that as a power almost and an energy source for that matter, because I very, very believe that the universe doesn't give you anything that you can't handle. And I know for a fact that sometimes I'm just like, oh, why, Lord, why? Why are we here again? But then I always find myself in the most magical situations where I'm like ... If anything, I went through this so someone doesn't have to go through this or I went through this so that somebody else can be like, oh my God, that's awesome. Here's a sign I've been waiting for to do this as well.

There's little moments that I do my best to try to find some energy source or light because it's already tough out here being a human in this world and there's so many things that are happening currently at the moment where I'm just like, why are we like this to each other? But then there's those teeny little moments, the little gold nuggets I try to find to make it worthwhile sticking around.

Lily:

I love that. And I think you bring up a good point of that different identities that are already a layer of what you have to deal with in this existence, in this society. And I know that one thing we really wanted to talk about was the intersectionality of queerness, race, disability. I know all three of us sit at different spots in those intersections, and I think that for myself at least, my queer identity is very connected to my autistic identity because as I was discovering one discovered the other. I'm just interested in both of your relationships and how that intersection plays a role in your life. Race as well. Lots of intersectionality going on.

Jillian Mercado:

Do you want to go first Erin?

Erin:

You can go.

Jillian Mercado:

Okay. Yeah. I think as I grew older, I discovered so many different intersectionalities that I've and that I've always identified with, but I've never brought them with me, if that makes sense. I've always either tucked away my queerness or tucked away me being Latina because it felt safer that way. And then I had to realize that not only that is such a privilege to have, but if I would tuck away one of them, I would only be giving half of myself. I wouldn't be giving all of who I am. And I think that that's important to be who you are in every scenario, no matter if it's dangerous, no matter if you feel unsafe, no matter if it's uncomfortable feeling. But if you're not who you are the whole time, then one, mistakes will be made, and two, nobody wants to live that way. At the end of the day, nobody wants to hide who they are. And I feel like there is room to be who you are no matter what.

Mind you, there's obviously outside forces that can prevent safe environments or whatever, but I feel like the most toughest people that are around ... Mind you, we don't have to be tough. We don't have to be warriors or anything like that. But I feel like the people who have always been true to themselves live the happiest, even if they don't have riches and royalties and gold and whatever material things. I think if you're able, at least with yourself to be accepting of you, everything follows through easier I think. I think When you have that hurt inside where you don't feel like you're complete because of outside forces, it makes life a little harder.

But the most beautiful people I've ever met accept themselves fully, whatever that looks like for them. And that's so inspiring to be surrounded by those people or to have moments with those people because that only makes me feel safer to be who I am and to celebrate all my intersectionalities and to be a proud Latina and to be screaming outside of an airplane how queer I am. I'm so queer. Sometimes I'm like, Jesus girl, so, so queer. And really am out here with my disability community. And yes, I do need extra time to get on the plane, and I will take that time to get on the plane and y'all will wait. Okay. Even if it's 10 minutes, I am going to take it. And being woman and understanding that yes, we should have autonomy of our own body and there should be no questions or comments about it. That's just the end. Period. So there's times where I'm just really unsure while we're still talking about these situations because it just seems so redundant to me. We have so many other important things to talk about and we're really choosing to talk about this really doesn't compute in my mind how, why. So, yeah.

Lily:

Yeah. It's still as if it's a debate when it's like there's no debate. This is our bodies. There's actually no debate.

Jillian Mercado:

There shouldn't be. Why are we even talking about this first of all?

Erin:

I have all those intersections and all those identities are under fire every day. And it's hard to hold all of that in yourself. But talking about moms, my mother always instilled in me, don't give a shit what other people think about you. Take up space and just be yourself. And if somebody doesn't like it, they don't matter in your life, so just forget it. And that to me is what propels me to be so out about who I am. That's my-

Jillian Mercado:

It's so true. And I want to add to that because I feel like sometimes ... I know I used to be like this when I was younger. But sometimes I feel like in places where we do take up space physically and mentally speaking, I think that when I was younger, I used to freak out about taking other people's space. Taking extra time to get on the plane or extra time to do anything for that matter. And then I would get into these really negative thoughts where I'd start telling myself, I'm a burden. I shouldn't have been here. Why did I even come here? Now I'm making these people delay. Maybe someone has a graduation. I really came up with stories in my mind. And then I had to be like, no, Jill, they're taking as much time as you're taking. Maybe in different ways.

It could be vocally speaking. It could be literally space speaking. What's so different about you? There's nothing different about you. You just need more time as they would need more time somewhere else. So when you humanize humans ... Which is funny to say. Like where you say, you start ... No. Fuck. I'm going to do me and that's it and the end. And that's it. And there shouldn't be more talk about it. So again, moms are right and they're the best. And whoever is your mom ... It could be a mother. It could be a mom, literally. It could be whoever you ... Even, it could be yourself. But listen to those thoughts and voices because they're right usually. Unless you're harming someone else, then they're not, then delete them. Then go get [inaudible 00:48:25] because you need them. But if you're not harming anyone, then definitely listen to them.

Erin:

My favorite thing to do is if I notice somebody getting frustrated with me taking up space, I will not move. I'll stay there, be in their way.

Jillian Mercado:

As a protest.

Erin:

As a protest.

Jillian Mercado:

I will turn this to a sit protest.

Erin:

Yes. Absolutely.

Lily:

I love that. And I also think just bringing up that with lots of different identities under attack, the feeling that maybe the outside world doesn't feel like a safe space. I think that that's when it becomes even more crucial to be true to who you are because your inside world is the only world that there's some control on, and that has to be a safe space. And I know for myself, it was not a safe space until I started accepting all parts of my identity. So I think that that's really important, and listeners just hope you're making a safe space in your own mind. That's really, really important and it's got to be step one, I think, for a lot of things.

Jillian Mercado:

To add on to that, I think that there's times where it's even hard to find a safe space in your mind, but if anybody's listening and feels that way, the most beautiful thing about ... At least for the intersectionalities that I am a part of, I can't speak about others, but that I know that I personally have gone through. There's so much magic in all of them and there's such a community of people that love you and will hear you, and that will sit there and listen to anything.

I know that the disability community has definitely saved me in so many different situations, and I'm so thankful for that. I know that my Latina community, as loud as they are, as messy, as chaotic, we're such lovable people and we will literally saw off a hand for someone else to make sure they're safe and to make sure they're being seen and I love that. And we definitely add spices to every conversation. So if anything, you will laugh. And I feel like I'm pretty blessed to say that I've found beautiful moments in all my intersectionality and knowing that there's such a community of people there on the other side who will accept me the way I am. So if there are anyone who's listening who feels like their mind is just complete chaos and has 30 tabs open on the computer in their head, know that there is someone else who will take and close each one of those out to make space for new things. So definitely reach out.

Lily:

Yes. I love that. And I think that that's actually a really important step that doesn't get talked about. I say make a safe space in your mind. And I think that there's a thought that that has to be something you do alone, but it doesn't. Yeah. Community is so important, and in the individualistic society we live in, sometimes it can seem like all advice is advice that you need to take and do by yourself. But no, find your communities of people who, like you said, will help you close those tabs. I think that that's crucial.

Jillian Mercado:

And it could be small. It could be so tiny. And I only say this because I'm so in my head all the time. Too much in my head. Girl, I live in my head sometimes and I'm like, wait, hold on. You have to get up and go out and experience life. But I feel like there's ... Even if it's tiny little things. If you're able to go to the supermarket and just ask somebody where the butter is, even though you absolutely know where the butter is, just to get that human interaction. And if you are not able to go outside, I know I found such a community in playing video games or going to ... I'm a nerd, so I love anime and finding my anime community and talking. So there's little things that are fortunately enough. If you're able to hear this podcast, that means that that is a form of privilege that you have.

So that means that you have internet access. So that means that you could find that community online if you put yourself out there to find it. And that's the first small step that you can do. Everything else snowballs into that. And again, everything I say this is because it's been personal experience of me just getting lost in my own head. It wasn't necessarily my generation, but my sister's generation, so she made me watch SpongeBob. And there's an episode where SpongeBob is literally in his head running around burning file cabinets and going help, help or something he said or whatever. And sometimes I literally feel like that where I'm just running around in my own head, not finding an escape exit. But then knowing that there's always a fire extinguisher on the side. And that is community, and that is finding people who will understand and who listen, because I feel like in this experience we have on this planet, we're not meant to be alone.

That is pretty impossible for people to survive alone. And I think it's important to, as strong as you want to be that community and people are out here to help. You will always find someone who will give you a hand to help no matter what. And it is very important to ask for help if you need help. Again, I'm saying this out loud because I'm so stubborn that sometimes I don't ask for help, and my friends are like, "Jillian, just ask for help. It's not that hard to do so. People love you who you are, and no one's going to be mad. And if they're mad to help you, then those are not friends that you need in your life. So control-alt-delete those people. It's fine."

Lily:

Absolutely. Yeah. It's definitely easier said than done, but it's important. I also want to note that you've said that it doesn't matter about size or anything like that. I think in that episode of SpongeBob, it's Patrick that helps him get out of there, and that's his one buddy, and that's all he needs. It can be your mom, it could be whoever. It's helpful, I think, especially if you are someone who tends to live up in your head, which I definitely relate to Jillian. I definitely spend a lot of time up there, and it is crucial to be able to have the people in your life that you can say, "Hey, I'm in my head, can you hold my hand as we exit the building? I need that." So I think that's really beautiful.

Well, we are close to being out of time, but one topic that we-

Jillian Mercado:

No.

Lily:

I know. This went so fast. One topic we didn't quite get to that I want to just bring up at the end. You have worked on shows and your short film, My Eyes Are Up Here and L Word, both sex. Sex happens. Sex is real. And I think it doesn't get talked about at all in the disability community. Well, it does in. It doesn't get assumed outside of. There's a lot of assumptions about us that we don't have sex or we don't do these things. What was it like being on-screen holding the bar of not only disabled representation, but this taboo topic and being the face of that? How'd you feel about that?

Jillian Mercado:

Not going to lie, the first time it was brought to my attention, I internally screamed both in horror, film, and excitement, all into one. Everything inside my body was like, don't do it, Jillian. And I literally was like, absolutely. It wasn't my intuition telling me not to do it, it was my brain telling me not to do it. At first I was like, I didn't even hesitate, I said yes. And then it all settled in my body and I was like, okay, Jillian, if we're going to do this, we're going to do this right. We're going to really ... And I did my research even though I myself have a disability, but I authentically researched ... Which I kid you not, Googled sex scenes with a disabled character or whatnot. And unfortunately ... And then also fortunately, I guess because sex is awesome, and if it's in porn, then that's awesome as well.

But it was a little gnarly to me that it was the only thing I found other than maybe a few indie films. But that was pretty much it. And so I was like, wow, the fact that this is on Showtime, so a bigger audience for that matter, really made me nervous at first. The scene was three minutes, mind you, as far as in the L Word. It took me at least six months to make sure. I had conversations with my scene partner. I had conversations with the cinematographer letting them know at the end of the day, this has to look sexy. That's it. Period. It just has to look good. As good as anybody else who has a sex scene on this show, which it's like every single episode, multiple scenes. I'm like, it just has to look very cohesive like the other scenes are. It has to look beautiful. It has to look hot.

I want people to forget and then remember. I want that rollercoaster of like, wait, what? Wait, what? Wait, what? Wait, huh? Wait, yes. Literally that emotion rollercoaster. Really wanted it because it was so important for me to not only showcase what sex could look like if your partner has some sort of disability, but also that it is as important as anybody else who doesn't have a disability get to showcase this part of a normal person's life. I think it's unfair to categorize every single person as asexual or that they don't have sex, which can also live and that's very important to showcase that as well, because that's a real thing. And I think that a lot of people get really confused when someone's like, I'm asexual, and I'm like, that's fine. But it's also fine for someone to be like, I'm not, and I do enjoy that part of my life, and I think it's okay, and I'm not sure why we're even having this conversation to begin with, but here we are.

So it was very empowering. And I really wanted to make sure that I was I doing it for my community, but I was also doing it for myself and hopefully with people that wasn't sure if that was even a possibility or younger kids who their emotions are ... Literally, hormones are going all over the place, but society saying, no, you can't make out with that person. No, you can't sleep with that person. Not because of safe sex reasons and solely because you have a disability. Period. So that was really important to me to showcase those nuances and also showcase through the part of ... There's this line I say, which mind you, I said it in our table read, and they literally made me say it out loud. So it was literally a personal experience that I had where I told a person, you're not going to hurt me.

But it's so important because I feel like a lot of people assume that people have disabilities are very fragile, and I feel like consent and communication is important, period, whether you have a disability or not when you're in such an intimate space. But I feel like more so if you're going to hurt me, I will let you know. I will vocalize no matter what kind of vocalization or sign. If somebody's saying no, no matter how they're saying no, it's a no. But it's also, you shouldn't assume that you're going to hurt someone unless they're telling you what to touch, what not to touch, whatever. I think communication is important period. But in a way, I guess I'm happy that line was put on there because I feel like a lot of people do assume that we're very fragile and we're like porcelain dolls and any touch will break us or they don't want to be that person or whatever. So it was really important for me to showcase all those teeny little nuances and also make a really hot scene. And that's what I tried to do in the movie, in the film that I showed at Tribeca, which was, LOL, about a one night stand and the whole movie's about me trying to find plan B, and in the L Word, just having a relationship with my boyfriend on that's what happens when you have a relationship. So yeah.

Lily:

You succeeded.

Jillian Mercado:

Thank you.

Lily:

It's a very hot scene. It's a very hot scene. That's wonderful. I think that you, in so many aspects of your life and the work you're doing and the content you're creating, just truly are changing people's assumptions and making this world a better place for everyone. So I just thank you for the work you do. I am geeking out the fact that I got to talk to you today. This has just been so awesome. I think you're so cool. Erin, you know I think you're so freaking cool. So I'm delighted.

Jillian Mercado:

Thank you. I appreciate it.

Erin:

It was great. Yeah.

Lily:

Yeah. This has been wonderful. Thank you for a beautiful episode. Listeners, I hope you've enjoyed this. Another awesome episode of Everything You Know About Disability Is Wrong, and maybe you're starting to learn some things about disability that are right. Have a wonderful day. I did not want that episode recording to end.

Erin:

No. It felt like it was five minutes.

Lily:

I know. We've never gone over on a recording. We went way over on our recording time for this episode because we were just so into the conversation with Jillian. Thank you so much to Jillian for coming on and being so open with us and chatting about really important stuff. Just like we say about all of our guests, give them a follow on social media. Jillian's Instagram is really awesome and she's just doing incredible things in the world of fashion and acting and just also sharing her experiences with ableism out in the wild, which as we talked about in this episode, are unfortunately all too often. So give her a follow and thank you for listening and we'll see you next time.

Erin:

And we'll see you next time. If you like what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily:

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:

And I'll see you next time for another episode of Everything You Know about Disability Is Wrong.

(singing)

Lily: (Commercial Segment)

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Erin: (Commercial Segment)

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

Lily: (Commercial Segment)

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

Erin: (Commercial Segment)

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

Lily: (Commercial Segment)

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

Erin: (Commercial Segment)

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