Transcript

Kate Salonga

[00:00:00] Hey there, you’re listening to Fishnets and Fries, but before we dive in, I want to acknowledge that this podcast is being recorded on the unceded and traditional territories of the Coast Salish peoples, past, present, and future. As an uninvited settler on these lands, I’m committed to my ongoing journey of decolonization and learning.

And I invite you to join me in this important work. Hi, I’m Michelle Mateus, and this is your invitation. To get messy, get real, and get into conversations that matter. Whether you’re here for the first time or coming back for a second. Grab those fries and let’s dig in. 

Michele: Hello everybody and welcome to our second, second episode of and Fries. We actually recorded this episode already and as I am embracing the fact that I am a newbie podcaster we have lots of tech issues and my lovely guest [00:01:00] today, Kate. Kindly offered, hey, if we have to re record, let’s just go with it. We were together last time, which was so lovely to have you here. I would say and share fries, but I burnt them. So let’s be honest because that’s what I’m all about.

I’m Michele Mateus, your host here to help you shake off conformity and celebrate a more bold and bodacious life one fry at a time.

Today, I am joined by wonderful human being. Her name is Kaitlyn, although she likes to go by Kate, but I’m one of these weirdos. I like to call everybody by their whole name. My son’s always like, you don’t need to call me Maxwell mom. It’s Max. I’m like, it’s Maxwell. And so I can’t help but call you Kaitlyn.

Cause I think it’s so beautiful. Kaitlyn lives here in Vancouver on the traditional and unseated lands of the Coast Salish peoples. She is a Vancouver diehard lover of oceans, lakes, and mountains. a trained singer who now uses her voice to [00:02:00] advocate for the disabled population. And as I have said to her on our first recording, I fricking love that.

Like from singer to advocacy work, use that voice. And she’s got such a beautiful soft voice. And I actually want to just say share too. I think that often we think we have to get loud, you know, and, and it really intimidates people and introverts. And truth be told, I’m actually an extrovert and introvert. No one believes me when I say that, but I am. so I love that you use your beautiful soft voice for that. Welcome Kate.

Oh Kate Kate was diagnosed with a lung disease called pulmonary hypertension in December, 2018, and has since lived with an IV pump attached to her chest 24 seven. She also models for some Vancouver and lower mainland brands where she hopes to diversify the bodies we see in the media. Big, warm welcome for our second, second round.

Kate: Happy [00:03:00] to just hang out.

Michele: to move around so much when I talk. And I realized actually, after listening to that first, second recording that sometimes I need to remember to stay close to my mic. So to all those listening back to my humility as a new bee podcaster. Yeah, please excuse that. Also, I do have notes up of what I want to ask Kaitlyn.

So if I’m looking away, that would be why. So let’s jump into it. First of all, Kate, how are you doing today?

Kate: It’s, at the time of recording, it is our second day of snowy Vancouver and me and my dog are loving it mostly because we don’t drive.

Michele: Oh, your dog loves it.

Kate: He is a Husky, so he, it’s funnily enough, he was actually from California, so the first time he saw snow was when he came up here to get adopted by me. So he’s just like a, he’s just a happy little guy and he’d just go digging around, he thinks it’s free snacks.

Michele: [00:04:00] My dog is a rescue from Mexico and does not like the snow. In fact, we have to create like a little path for her to go potty.

She very particular.

I mean, I’m particular about where I potty too.

Kate: she’s a very cute podcast.

Michele: I know. I don’t know where she is. We might hear her. We might hear her. All right. So Kaitlyn, I would love, even though I introduced you, why don’t you tell us a little bit more about yourself?

Kate: So I very vocal about my patient journey as somebody with pulmonary hypertension. Something that I’ve discovered though, is that a lot of people with my same common lung disease not everybody considers themselves as disabled, you know, so I kind of use that label upon myself as a choice.

I think that it’s fitting because Without my medicine, without this attachment that I have coming out of my body, I would not have the ability to breathe properly. So [00:05:00] I am completely fine and actually proud of that label. I don’t think that disabled is a bad word. And now I’m trying to open the floor for more discussions around visual differences and you know, medical situations that are often You know, kind of made secret and talked about shamefully.

But I don’t think that’s necessary. I think it’s just a fact of life. And we can, as easily as say if we were, you know, explaining something to a child about, this is X, Y, Z body part. Yep, that’s just an attachment of me. And I think it’s I think it’s going to be kind of a great pathway to a more diverse future.

Yep, a lot of time people don’t see my bump, they just see a body, I think people really think of disability of, you know, it has to be somebody in a wheelchair, it has to be somebody elderly and that’s, that’s really important. It’s very much not the case, you [00:06:00] know when I’m, you know, referring to somebody with a disability, it could be, anything

and I, I really don’t think that there needs to be any shame around it and that’s kind of what I’m trying to work towards.

Michele: I love it. I love it so much. So let’s talk about what you’re trying to work towards. Cause I know that you have been very Open . Like you want to see people with more tubes. And I would just want to backpedal for a second. How I know Kaitlyn is I actually photographed her friend’s wedding and I had a few years ago, put a call out as a person, myself living with a disability and wanting to connect with more folks me, that. I’m like, you know, doesn’t matter what we are living with, but we have some challenges in our body and complex relationships with our bodies. You know, we may, might not feel like our bodies are really working the way we really wish that they would, or didn’t expect this to happen to our bodies

I had put a call out to [00:07:00] my community, wanting to photograph more folks and Kaitlyn sent me this. And I’m still so upset because that day we’re having so many tech errors. And I was looking for that email that she sent me. Do you have that email? Oh, my gosh, I want that email again. She sent me this email and it was so beautiful.

It made me cry. And. Sharing her story as to why she wanted to be my muse. So sometimes I will do like creative calls to kind of play and do something different. And so that’s what it was. And like, I don’t know the first three lines and I’m like, yes, yes, And then all the feels I could feel not because I was sad for her, you know, because I could feel her. And I could feel it in her words, you know, and I, I knew that when I got her into the studio, it’s going to be really powerful. So I wanted to read a little clip from that, but I don’t have it, but anyway, it’s in my heart, it’s in my [00:08:00] heart. So that’s how I originally met. And I was able to photograph her. And from that email, you said you wanted to see people with tubes and you already said that here today. So why don’t you talk a little bit about why do you want to see that? Yeah.

Kate: I think it’s a very like it’s, it’s more common than people think. Especially with like people have heard. The words dialysis, people have heard of people with, insulin pumps something as simple as that. It’s very common and the technology for in for,, type 1 diabetes has come so, so, so far.

But we don’t see a lot of it we don’t, , like a lot of, it’s funny because my my grandpa, he used Do the little like finger prick tests on us when we were kids and I thought it was so scary and it was just kind of like , he was teasing, but it was just more the fact that it was just like a fact of life that this is something that they had to do

And it’s all around us

[00:08:59]

Kate: It’s just [00:09:00] not

 Present in a lot of our visuals and a lot of our media, so that’s why I kind of wanted to just

make it.

More accessible to the wider audience because it’s a lot more common than people think. You know, we’re getting there. We, I’ve seen things like ostomy bags, which for people who don’t know is I believe it’s for Crohn’s, Crohn’s disease where there’s issues with your large intestine.

And so You essentially go to the bathroom in a bag that kind of like Connects you via like your stoma, which is a protrusion from like from your stomach, but goes directly to your large intestine. And we’ve got people rocking ostomy bags on like American Eagle and like down the red carpet for whatever Housewives TV show is on

Michele: Silence. Silence.

Kate: [00:10:00] awesome because we’re getting there. We’ve got, we’ve got our baggy friends. Now I want to get. our Tubi friends out there. So let’s get, let’s get our feeding tube models all up in it.

Let’s get our dialysis friends all up in it. I myself am rocking a chest port.

That attaches I’ve got like five feet of tubing to my giant game boy sized pump and I want to see that. Every single day , out in an ad or something like that.

I think it’s totally normal.

Michele: Yeah. And I love that. You call your pump a game boy. You told me that when you first came on a boy. So instantly, you

Kate: joke is to say that I run off of four AA batteries.

Michele: know what? I, when I was diagnosed with multiple sclerosis, I always joked. I think humor is my resilience. That has been a big part of my own personal journey as someone who’s experienced bucket loads of trauma. And [00:11:00] life just has always given me all those treats along the way. I’ve, you know, when I got Multiple sclerosis.

I was like, okay, well, I get to join a club, you know, I don’t know. I sometimes use humor , I’m not trying to make light of the situation. I want to make that really clear to our listeners. It’s like, we’re not trying to minimize anyone’s experience or,, how hard it is to live in our bodies . I’m just sharing that for me personally, I feel like it’s similar with you with like your nicknames, which you can tell us one of your other ones. I don’t know for me the way I approach life. It’s just helped me. Sit with and move through and be with the fact that this is, this is who I am.

Kate: Oh, I think two things can be true. You can have this really awful, unfortunate diagnosis, and you can also be thriving with it, both of those things can be true at the same time.

Michele: On that note, , I remember looking up photos of folks because I didn’t know what it was that you had [00:12:00] before you came. And , this has been the case for a lot of things including multiple sclerosis. You look up, like if you go to a Google image search and you put your thing in, it always looks like sad.

Everyone’s sad and, or, or very clinical looking. And when you came in for your photo shoot, that’s not what you wanted. So tell us, tell our listeners, what is it, what is it that you wanted to see?

Kate: So I go by an alter ego on social media called Squishy Lungs Syndrome and that’s kind of my way of describing what it feels like to have pulmonary hypertension to somebody who doesn’t live in that kind of a body. So for me, it just kind of feels like shortness of breath, it doesn’t feel like I can get like a full lungs worth of air in.

And when Michele chose me as her, as her muse, which was such an awesome opportunity, and I knew we were going to have, , this rad connection because you had understood the, the medical struggle part of it. We kind of both [00:13:00] bonded over the fact we had to learn to walk again.

Like,

Michele: Yep.

Kate: not an infantile age, so, so, you know, that is something that we, we bonded over and I was so excited to have like an image of me just like, like, Pamela Anderson, rock star, Ashley Graham kind of vibes with my CPAP, with,, Tubes working around and I want, I think we, we both agreed that, you know, we want to be able to Google pulmonary hypertension or multiple sclerosis and not see only clinical images.

Michele: Yeah. Yeah. Like, so back to what I said about it looking sad, like we know it’s sad. we know there’s a clinical side to these things. Everybody knows, and there are people living their day to day. all these things in our bodies, and this is why representation matters so much to not just [00:14:00] show people sick, you know, or like with their doctor being checked up, which is like a lot of times the image you see, but just living and or. Being fucking gorgeous and glamorous and sexy and all of it, right? And I think we nailed it. So on that topic of looking glamorous and being sexy and all of it, I know that’s also something that you like to talk about, about feeling sexy.

Being in a larger body and being in a disabled body. Why is that important to you to show? there’s the, the two strands there. Why do you want to show more of that?

Kate: So for me, it’s like, it’s, it’s like a zillion and one strands going on at once, right? I’m a short, larger Filipina with a Disability. And that is such a niche [00:15:00] market.

It’s just, it’s just such a, you know, a small corner of the world. And if I were chatting with somebody who was like my mirror self, I would want them to be able to see themselves in media. I would want them to have something to look to, to have common ground. And that’s kind of what I’m, you know, trying to represent out there.

I want it not to be the same. Universe that I grew up with, which was, Paris Hilton and Nikki What’s Her Face I’m so sorry, she’s, Richie! Richie? She, she’s, she’s lovely, but they’re both very kind people. But yeah, it was just a lot of, you know, flat tummy, very tall, skinny. tan blonde women and I felt no kind of relation to.

And it’s sad because, , there’s, there’s a hint of this this ugly, ugly trend called heroin chic that’s beginning to come back with all the,

Michele: no

Kate: like the [00:16:00] With the Ozempic and everything like that. And it’s

Michele: Hello.

Kate: retroactively and it’s, it sucks because I was screaming in my room the day that Ashley Graham walked down the Victoria secret one runway as an angel which she had addressed, she had, commented on That this brand had not necessarily done a whole lot for people of her kind of size.

But we’re trying to change that. And I think that’s the whole point. Like, people, people can be wrong. People can grow. And, brands can do the same thing. They can be,

Michele: that. Right.

Kate: messaging in their past hasn’t been the greatest, so we’re trying to revolutionize what we’re doing here so we can open the floor to more people that want to participate.

I can be a disabled fashion girly and it [00:17:00] can be the most awesomest thing and people, younger people can see that and I really hope that there’s just like a A little, a little version of me out there, a smaller pulmonary hypertension patient, or even just like a 2B gal that’s like, hey, if she can do it, I can do it ?

Michele: think that so I’m a photographer for listeners who do not know that and I’ve been doing this for 10 years this year, professionally and much longer, you know, just always had a camera in my hand for a very long time. yeah, I always think about how representation matters and how, if you see yourself, you see potential. Right. Like if you see, not even just yourself, but you see yourself in someone and you see potential, you see hope and I always encourage folks that I photograph and understand why it may not always feel safe to put ourselves out there. This whole idea of taking up more space, I. promote that and talk about that.

And at the same [00:18:00] time, also recognize that can be really hard and vulnerable to do. And I know that for some folks, just seeing someone helps them feel like they might be able to do that one day, you know, regardless of if what their age, you know, it might be someone who’s had the same thing as you and they’re 60

It’s really hard because if we don’t see ourselves represented, we feel more lost, right? And if we are seeing someone with the tubes, maybe there’s like sparkly cord tubes. And I feel like there’s all these cool things that we can who I photographed, who has a. Glass eye recently got it’s like a sparkly glass. I know like it’s all glamorous.

Kate: Amazing.

Michele: Her name’s Jessica and I’m just like, this is so cool. And actually I also had introduced her to the agency, which you can mention that same agency. And she came [00:19:00] and we did some photos with her eye out. And she told me that was the first time someone’s seen her. With her eye out that like doesn’t really know her, you know, so it was a really vulnerable experience because it’s scary to show these differences and it’s empowering.

Kate: Yeah, I, I, I love that. There is a female opera singer who is local to Vancouver and she has four different sparkly, canes that she uses on stage, just to, like, coordinate with different outfits. And I love, I love that.

Michele: Right. I

Kate: choose based on your mood.

Michele: Well, and I want to rewind to because you talked about being a fashion girly. And I feel like, hello, fashion brands, like, listen up. Like people want to look good just because their bodies function in different ways or are differently abled . They still want to look at, you know, if they’re in a larger body, they still want to look at, this is one thing I’ve thought about a lot [00:20:00] because of someone who I have a small client closet here and I’m always looking for things to add to it and I hate to say it, the largest groups of retailers that have come on board to support larger bodies Unfortunately, our fast fashion brands, I know there are here in Vancouver.

I know there are some amazing local companies offering more size inclusive and it becomes challenging. There’s it, because I know that there are like sustainable brands and they’re more expensive and I’m all about shopping local, but it seems like there’s not as much in between, ? Don’t know if that’s changing.

I don’t know if you’ve noticed it, but I’ve noticed it. Or if they say it’s like size, it’s ugly. It’s

Kate: Yeah, yeah, it’s, it’s hard to, some of the plus size like for example, right now I’m like kind of on the hunt for like, just like a regular chiffon based like work dress and the line from, brands who just carry extra small, small, [00:21:00] medium, large, which is not my category, but it’s And then just to like, straight frumpy after that, where it’s just not the shape that I want, it doesn’t show off, like, I still want to show off my curves!

So why does it have to be this, like, giant circus tent of Of a gown, you know what I mean? Like there’s got to be some in between. But yeah, it was awesome because last year I actually did get to work with some local brands that do have more inclusive sizing in there and , they’ve got me in my tubes on their website and I’m just like, this is what we need.

Michele: too, which is why I had met somebody just internet connections through social media. Photographers connecting with photographers. And I thought after Kate’s photo shoot, I thought I got to connect her. With them, which I did and they’re called Kello inclusive and they are modeling agency out of Calgary, [00:22:00] I believe is where they’re stationed and they’re trying to bring more inclusivity and body image awareness.

Right. I, I feel like I should have their website out to say and also, so it’s not tokenized.

Kate: We’re not the stick. Yeah. We’re not the the butt of the joke kind of thing. Yeah. It’s just, it’s just, you know, we’re, we’re just part of it, which is true. We are just. Part of society. And the cool thing about Kello is one of their like founding photographers. She her name is Tilly Nelson and she had a project last year called we’re already here.

And it was all about how people who are disabled, who have visual differences are. Already just kind of functioning in society and we just have to open our eyes to it So I was her like representative of somebody with tubes Somebody who’s got an external pump who just works in her office and that’s that’s all there is to it

Michele: I love what you just said there. Visual differences. I think sometimes people don’t know what to call things, you know, and they just, by the way, here on fishnets and fries, we [00:23:00] know that we may make mistakes. I was actually thinking I need to add that somehow to my intro or outro that we may make mistakes in language and we’re welcome for you to call us in. Because language is always changing. And sometimes we When you’re not in a particular community, you may have fear to talk about that or talk about it with your kids or, , even ask somebody.

Kate: There’s like a polite and an impolite way to do it, you know what I mean? Maybe your kid is kind of wondering, like, why I have a little, like, flashy thing on my, on my, my little fanny pack. Yeah, my Game Boy! You know, and that’s something that my, my nephew has just , questioned, because, you know, Mommy and Daddy don’t have stuff sticking out of their bodies, that kind of thing.

I think there’s a polite way to do it, and definitely a disrespectful way to do it, because I’ve been on the end of both, unfortunately. And , realistically, it is not somebody with a disability or a visual difference. It’s not their job to educate. You know, it’s not, they have, you are not entitled [00:24:00] to their information.

If they choose to share with you, then that’s great, but it’s their prerogative. I’m, I’m always of the, the mind that I love to share, I love to educate because I like the That . I’m just like, yeah, it’s kind of normal, which is something I’ve had to deal with, like even just in work settings and people are like, what’s that?

Michele: What’s that weird, like that little cassette thing in the fridge, which happens to be my medicine. And I’m like, yeah, it’s, it’s, you know, for For this is what you see, this is why I’m attached to my purse every single day.

it’s just so stylish, it’s so stylish.

Kate: It’s an excuse for my shopping bag addiction.

Michele: I want to talk a little bit about the modeling and feeling sexy You know, confident in a body with tubes and all of the things, how did you come to that place or, and, you know, sometimes it’s still a process. Maybe how’s not the right question, you know, I think so [00:25:00] often when our bodies change and we can feel like it’s failed us and we have a really complex relationship with our body, it can be hard to get to that place of like, fuck it. I want to feel sexy, I deserve to feel this way, or beautiful, insert whatever adjective you want. I’d love to hear a little bit and I bet some of the listeners would too because this is something I think a lot of people struggle with. That relationship to their body and wanting to feel something inside, but really nervous to step into that.

Kate: For sure. I wish it had been a fast transition. I spent about a month in the hospital being the most bloated and swollen, pincushiony thing, only to come out of it with a new accessory that I have. No ability to take off or remove. And, I, I was a fashion girly before I was diagnosed. So for me, something as simple as just [00:26:00] getting dressed in the morning was taken away because it now became where do I thread the tubes?

Where, how do I, how do I push this pump through the sleeve of whatever that I’m wearing? You know, there’s a lot of clothing that I’m not able to wear the same anymore because of this. But that just kind of took some trial and error. I went through a lot of medical conditions, it came with like a weight fluctuation that just went every which way possible.

So I was definitely struggling with my body image a lot, and it also didn’t help that in my in the relationship that I was and at the time, I, I didn’t feel sexy anymore. I felt, like, almost abused medically because I had just lost all autonomy. I developed a fear of needles.

I developed this fear of pain that I just couldn’t shake off , it took years of therapy [00:27:00] to kind of get through that. And there was also this. It’s, you know, slightly minor thing where if you get pregnant and you have pulmonary hypertension, they don’t go together. So it was just a very like, kind of It’s kind of a big deal, but I’m minimizing it for the sake of humor.

Yeah, so it was just like a very sticky journey of trying to figure out how to like be okay in my body again Especially after all this medical trauma that I’ve been a holding and Because of the kind of discussions around birth control in that relationship I did have to walk away for, you know, a number of reasons, but that being kind of a major one of them.

Michele: Bye bye. I was trying to do a sexy radio voice. Don’t let the door hit you on the way out, buddy.

Kate: Yeah, he he also, like, didn’t want to take care of financially take care of a person with a [00:28:00] medical situation. So, naturally, I was like, this is the end. And people, it’s funny when people are like, oh, he must have left you. And I’m like, nope, I made that decision on my own for my betterment. So, I, I walked away.

And it was very Scary in the sense, I had been with that person for 11 years. I didn’t know what it was like to date again. I didn’t know what it was like to be, like, intimate with somebody new. I, I didn’t know if somebody could, if somebody else could love me in the same way because he had also been with me before diagnosis.

So you, this, this was a whole new training ground for me to figure it out. And I think you really do have to love yourself before you could fully let anybody else in. And that transformation kind of started as soon as I left, I had been grieving that relationship long before it ended.

And I knew that. [00:29:00] Everything that I loved about myself was true before and after him. Nothing. Yeah.

Michele: and, and it’s okay if we never fully get there, but we start to learn to accept ourselves or that’s one way I kind of frame it. And I just love what you said. Yes. If you were here, I’d give you a high five, which is what we were doing when we were together. I love high fives. Yes.

Kate: You could label me anything you want, but the things that I love most about myself were still true. So I didn’t have, as much heartbreak around that version of myself as I thought that I was going to, and I kind of just turned back into the same, but better.

Stronger, independent woman who was now 30 something that I was before him. And that’s when things started to like fall into place for me, I [00:30:00] had that photo shoot with you, which was so, so. What I needed at the time it was beautifully empowering and celebrating my independence as a person and yeah, it made me feel sexy with my c pap on like how freaking cool is that?

 I started Like, publishing articles on, sex and pulmonary hypertension and how that experience can go and it’s, it’s not as impossible as It might feel, I want to say,

Michele: Like

In your body.

Kate: exactly to, to, you know, kind of get your groove back, Stella, you know what I mean?

I think you just kind of have to like, open your mind to it. There are plenty of days when I, like, I don’t like this angle of my tummy or, you know, my, my pants are feeling a little bit tighter than usual. I, I haven’t, I haven’t, I haven’t worn jeans in a couple of weeks, let’s just say, you know what I mean?

And then, you [00:31:00] know, every now and then I’ll just like catch myself in the mirror and be like, Oh, look at those curves. Just, oh, look at, look at that. Amazing. And I just, yeah, exactly. And it’s not, it’s not vain. It’s not,

you’re not being selfish by, by thinking these things about. And I think that’s what women especially are trained or bullied into thinking is that any any positive thought is Like you should still be working harder.

You know what I mean? No, let’s celebrate the win. Let’s celebrate that happy thought Let’s, embrace the positivity and I’m totally okay being the person who loves myself most in the world.

Michele: Oh,

Kate: I think that’s,

Michele: that.

Kate: I think that’s,

Michele: Every listeners, I, I, did you hear that? Let’s be okay with that. Yeah.

Kate: wish that for more people, actually. You know what I mean? So, there’ll be days where I’m just like, you know what, you, you deserve like a nice dinner that you prepared yourself, and look at this spread, look at [00:32:00] this steak that you didn’t need no mens to make for you,

Michele: wear

Kate: you know what I mean?

Michele: yourself.

Kate: I dress for me, I dress for what, what makes me feel good., I don’t think, It needs to be all like strappy, strappy, blah, blah, blah. Like you can feel sexy in a t shirt and jeans. You can feel sexy in a, just like a simple matching cotton set. You know, people think of lingerie of like, lazenza or, you know, it has to be a certain all of that.

Michele: If

Kate: But like, AHHH!

Michele: my eyes are big and I’m

Kate: AHH!

Michele: going now because I think this is one of my ongoing challenges and struggles as a photographer because I’m always trying to say you don’t have to wear lingerie. You do not have to conform to what people have dictated that sexy should be, which, by the way, the people that dictated that is the motherfucking patriarchy. And we know that we don’t

Kate: They’re old white men. Yep.

Michele: right? I have fishnets and fries.

Sorry,

Kate: Right! [00:33:00] Sexy is a feeling. It’s an attitude. It’s not a size. It’s not a dress code.

Michele: That’s the thing, I think, because there’s all this messaging around it, and this is one of the things I really admire about you, Kate, and I see your stories, and I see the fashion girly, and I see you rocking the looks in the mirror, and I’m like, yes! I feel like you literally just have to try it on. just have to try something on, and I think that can be the scariest thing, because we’re often worried, Do I look okay in this? do I look wobbly? I’ll tell you, I bought a dress recently. I ordered it online. I don’t usually like online shopping, but I was having a moment. And back in my day, I was also a fashion girly.

And now I just like, I

Kate: You’re still a fashion girly.

Michele: you know? Oh, thanks. But,

Kate: Look at your gloves, you’re still a fashion girlie. Look at your lipstick.

Michele: you should see what I was wearing beforehand, actually brush my teeth for this. So there you go. But you know, it can become really difficult. Like you were talking about how we both had to learn to walk again.

When I was in a wheelchair, [00:34:00] I wasn’t feeling all that. And so I feel like I’m actually thinking back to that time now is like, gifts that people would bring me. Maybe someone should have brought me these gloves that I’m wearing right now. I feel like there’s and I think it’s just this playful thing around fashion that we forget that it’s about self expression and being more playful.

I love seeing on Instagram a lot of folks being like, there’s no age to style? I really enjoy seeing your stories and seeing you rock all those looks. And I was actually thinking as you’re talking about how it’s harder to wear some of the things you wore before, maybe you guys start like a

Kate: Oh, I, I love the discussions around adaptive fashion. I honestly dream of a day when I can like design my own line of like pump carrying, you know, mechanisms because I have had a time trying to figure out how the heck am I going to wear this under, over, to the side of whichever outfit [00:35:00] that I’m wearing, and I figured it out so far, but honestly, like, the options are not great.

Michele: Well, okay. You just said adaptive fashion it’s not a term you, we hear very often. I don’t, I’ve never seen that in a store. I’ve never seen when somebody marketing that I feel like it’s obviously you’re going looking for that. And that’s a problem in and of itself.

Kate: Yeah, yeah.

Michele: is like how do we find this?

So yeah, you come across any adaptive fashion brands that you’re like excited about.

Kate: Nothing that is kind of fitting for me, but there are, there are pieces that I think would work in my, it’s funny because I had actually had a, made a weird discovery that , maternity clothes actually work really well for my purposes because my tubing is Is around my chest, some maternity clothes have a little, you know, a little, little, little pop out situation around the chest area that actually makes it very easy for me to slide through my device.

And I was like, this is such [00:36:00] a weird thing that I’m like, let’s just. Let’s just make it, multi purpose. But yeah, there’s, there’s definitely plenty of I wouldn’t say plenty. We’re still getting there. But there’s you know, years and years ago, Tommy Hilfiger, which is not even a store that you see often in, malls anymore, really.

Well, they, they, they did have an adaptive line, but again, it wasn’t in stores. So it’s, you know what I mean? Cool, awesome, you made it so that I think it was like either Velcro or snaps to make it easier to put a t shirt on things like cropping your, your jackets so that it doesn’t make it too bulky for somebody in a wheelchair to use.

Lululemon actually recently,. Say whatever you want to about the brand, but they did an adaptive line with their Paralympians. And I’m like, Ooh, that’s so exciting and cool. They

Michele: Mm hmm.

Kate: thought about this and, you know, they had tearaway pants with extra . High backs and mobility [00:37:00] spots around like the, the knees.

Just you know, something as simple as actually like bringing somebody with a disability in to have input. On your pieces, it’s huge. Don’t try to just make it up out of your butt. Actually involve the people who it’s going to benefit.

So we’re, we’re getting there, but you know, they’ve got some really cool ideas.

I think that’s awesome. Of things that are coming out, but you know,

Michele: it out

Kate: pump place.

Michele: your own. You’re going to have your own line one day. Also, I just want to rewind here. Our

Kate: There

Michele: with tubes, maternity wear, hot tip from today.

Kate: you go.

Michele: good hot tip. Want to talk about something that happened to you. And it really got my fire going.

You messaged me and we’re like, Oh my this fricking happened.

Kate: I was so fast to be like Michele.

Michele: and as a photographer, I’m just horrified. So for the fellow photographers listening, listen up and [00:38:00] listen close and do not fucking ever do this. Thank you very much. Can you tell us Kate, what happened?

Kate: So last year I was as Michele mentioned, I’m a trained singer and basically the the organization that I used to sing with was putting on this kind of pilot program to see if we, they wanted to do a group of towards my age range. Because they had a lot of children’s choirs, youth choirs, you know, senior choirs, but not a lot for the in between.

So that was a push of about eight weeks. It was really, really hard. We, we memorized all of our pieces. Two songs were in Spanish.

Michele: When you said that

Kate: from,

Michele: I was like, what?

Kate: Oh my God. I was commuting from Richmond to Coquitlam on a weekly basis. And that’s a lot to ask of anybody. Anybody, particularly a disabled body with mobility issues.

I was

Michele: [00:39:00] far

Kate: struggling.

Michele: in time, of

Kate: Ooh.

Michele: of

Kate: Well, for one thing, I don’t drive, so it was even worse. But it’s, it was two hours of traveling kind of back and forth from, you know, home to home to the rehearsal space on a weekday evening. So I had worked my blood, sweat and tears went into this experience. And on concert day, I was really excited.

I chose, of course, being a Fashion girly, I had to choose a little outfit that showed off the fact that I was somebody that had tubing and a pump and bandages. And I could still stand on stage and, do the thing. So I was really, really proud of that. And we had photos taken on concert day when we were all looking good.

And we, we took some, professional photos and we took some kind of silly ones, just kind of like show, like we’re a fun group,

Michele: Yeah.

Kate: that kind of thing. And when the photos were actually shared we had this group chat amongst the choristers and [00:40:00] the director. And I was really, really excited.

And of course we had, shared it on our own, like individual social medias and that kind of thing. And for about a day, I was really happy. And the day after I realized something was kind of off. I for people who are watching visually right now, you can see where my bandage and my tube sticks out.

This is very similar cut of the shirt that I had been wearing that day also. I didn’t see any of that in the photos.

Michele: I just tell a listener? Her tubing is just above her, you know, her breast area just below the collarbone. And right now she’s got on like a boat neck kind of open shirt with this beautiful meshy throw. Is that all, is that all one piece or is it like a throw

Kate: It’s all in peace. Yeah. It’s like, it’s like a bolero style kind of shirt. Like it’s all attached here.

Michele: she’s so fashion y. I just love it. So she, that’s what that, if you’re listening and you want to visualize, you can clearly see [00:41:00] that she’s got something on her chest that’s got a pump coming out, like a not a pump, a tube coming out of it.

Kate: Yeah. So I, I, I wanted people to see that I didn’t want to hide it. I wanted it to be like, Oh, she’s on stage. She’s, she’s, you know, rocking our socks off like everybody else is. So the, the photos got posted and like about a day after I realized something was off and that my bandages. And I thought that was weird, my hair was out of the way, so it wasn’t, the wrong side or anything like that, and I wasn’t standing behind anything, , in the middle of the ceiling, you know, no drop down mics or anything like that.

But it dawned on me that I had had my tubes and my bandages photoshopped and

Michele: can all gasp, take a breath. My

Kate: just, I,

Michele: for the listeners are popping out of my head right now.

Kate: I sat there in bed and I just, I like, no freaking way. , it hit me like a ton of bricks and I [00:42:00] was by myself processing it. That was the worst part is that I was freaking out to myself and you know, I, luckily it’s the, the The photos that were shared, they had both included the silly ones and the professional ones.

So I had something to compare it to. And it was, I was able to confirm that in the silly ones the photographer hadn’t bothered to make any edits and in the professional ones that were the ones that were going to be shared on mass we’re doctored and I, like, I messaged my friends and I was like, am I seeing this right?

Am I, am I going, am I losing my mind? And we all just were like, what in the actual hell? Cause that had never happened to me before and nobody had asked and I have known this organization for a very long time, and I was just in shock. So, I reached out to the photographer’s wife, who is one of the coreasters, and I asked her, [00:43:00] Did your husband photoshop my tubes and my site?

And she confirmed and she apologized on his behalf, she was just kind of like, oh, he probably didn’t know what they were, like that kind of thing. And I’m sitting here thinking, what would it matter if he did? What are you doing photoshopping bodies for a choir photo? It’s a choir. The funny thing is, when I talked about this on, my socials, people all thought it was, to do with a modeling gig and I’m like, no.

Bye. First love. Kevla would never, Kevla would never allow that. I would never allow that.

Michele: would never do that. I would never,

Kate: Who would?

Michele: never.

Kate: this guy!

Michele: never. I will tell you, I go as far as always checking with people. Sometimes I can’t tell the difference between a mole and a, and a zit, pimple. So And I photograph a lot of folks who are in perimenopause menopause and acne happens at that stage of life again And I always ask [00:44:00] i’m not sure is that a mole or you know Because my my whole theory around photoshop is if it’s not Meant to be there i’ll remove it if you don’t want it there and in your case, you know, this is part of you

I would never, like, when you reached out to me, I was like, are you f

Kate: Yeah,

Michele: words, and I still do, because I just, I cannot imagine the audacity of photoshopping somebody without their consent, number one. I always ask consent. Photographers always ask consent, always. I do not alter bodies. I, like, I just couldn’t. I couldn’t believe it. And I was so angry for you. And the fact that the wife had to apologize, what in the actual is that? Like, why

Kate: we will get there. Yeah.

Michele: like, so, and, and so then what happened? So she apologized. He didn’t say jack

Kate: So, so the funny [00:45:00] part is I, the whole choir knew my medical situation because I actually, when I went and introduced myself, I’m like, I’m a cyborg and I’m proud of it because I have this super awesome medical device and if you wanted a jam about disability rights, talk to me.

Michele: I

Kate: And that was just like, that’s just how people know me.

Right. And I was, I’m, that’s something that I’m really proud of. And that’s how I identify. So that’s how I introduced myself to the choir. So everybody knew what that was about. So these, these photos came about and. Just to get back on how you approach photoshopping, you had even asked me when we worked together about some IV scars on my arm.

Do you want these removed? And I said, no, because they’re of the nature of them being IV scars, I think it makes sense for them to be there. And you asked, you asked, and, that’s, that’s the whole thing. Consent is cool, right?

Michele: Consent is so cool. Not only is it cool, it’s sexy as all fuck. And by the way, those scars. Yeah, I don’t know if you got scratched by a tree or a dog or bit you or like, cause sometimes [00:46:00] people are like, Oh yeah, like I had the client one time she got, she burned herself with her curling iron.

Like, she’s like, can

Kate: It happens.

Michele: Right. So I don’t know what that is on your part. So if I notice something, I’m like, Oh, can you give me a little bit more context here? Is this something that you want? I don’t know. Right. And so if I don’t know, what’s the expression assumptions make. An ass out of you and me kind of thing.

Like, no, no, just ask. So carry

Kate: That’s all I’m about to do. So, naturally, a strongly worded email to the director of the organization, who I had known, , literally for like a decade. And my,, the director of our choir you know, I, I messaged them and I was asking, First of all, was this a decision by the, made by the organization, a specific ask of them, of the photographer, or was it just the photographer?

And I told them I would like an apology, which is not something that is too outlandish to ask for because at the end of the [00:47:00] day, this was just a huge act of ableism. And I was so offended and disheartened and the amount of hurt that I had actually held, in my body, in my soul over this You know, deliberate act of erasing part of my body.

 There was a girl in one of the younger choirs who had a limb difference. And I told them that this is equally as offensive as if you had Photoshopped an extra arm on her. That’s. Plain, plain and simple. That’s how I feel about it.

And it’s it’s deserving of an apology and some decisions by the organization. And I told them, do not use that doctored photo in,

, I don’t consent to you guys using that photo in any material.

Michele: Can I just say something before you go in? you all hear that? She let them know. I feel like this is so powerful and I’m actually getting goosebumps as you’re talking. Because I think so often we are in [00:48:00] shock of people doing these assholery type of things that we have so much on our heart that we want to say, and sometimes we just don’t have the bandwidth.

Right. And I love much. First of all, I hate that you had to do that. I hate that you had. To even go through this experience and I applaud that you took this experience as an opportunity to stand up for yourself and honestly for other folks like you letting them know this is not okay and I love so much that you said I do not consent to you using that image and so how was that received?

Kate: So the, they both emailed me back and apologized and they understood where I was coming from. They assured me that it was not the organization’s choice that it was indeed the photographer and they would be addressing. However,

it has been almost a year now and [00:49:00] I have not received an email. An apology from the photographer, which is kind of crazy. And I hate that, that experience of me putting so much work into two months is a big commitment. And as a working adult, it’s a big commitment as a disabled working adult. It’s a big commitment.

And just to have it spoiled by that experience That was really awful because choir has and had been a huge, huge part of my life and especially with that organization. So to have it tainted by this and, it kind of ruined what the photos meant, what they represented.

So I don’t, I don’t even know if those photos were used or even the the unphotoshopped ones, but yeah, it was just, it was so, so hurtful and yourself, all of the [00:50:00] photographer people that I have spoken to about this were like, what, what the actual. Effing, you know what I mean? Who? Why?

It’s a choir group photo, it made, it made no sense!

Michele: It made no

Kate: Yeah, so needless to say, I did not rejoin the organization after that. I had made a couple points of, you know, on matters of, accessibility in the rehearsal space. The counterpoint that was made was, well, the space is free.

So, yeah, they’re just, there just wasn’t as much effort on the side of the organization as I would have liked to see. And I kind of hurt my feelings, so I did not rejoin and,

Michele: It

Kate: you know.

Michele: eyes, again, are, so if you are someone who listens to fishnets and fries, mom used to always tell me I would get in trouble for, with my eyes because although they’re getting smaller as I get older, I feel like, but they’re big and they, I can’t hide my amazement, my disgust, my discomfort through my eyes.

Oh right now they’re very big. I just, again, I’m so sorry you had to have [00:51:00] that experience and that it had to taint the overall experience of, , reconnecting with choir, you love to sing and that’s such a magical experience. I myself was in a different choir, making that very clear. And it was such a joy for me to be in community and singing. And I’m really sorry that it had to end like that. And I’m so cheering you on so hard, Kate, how you handled that and the strength that you were able to like cultivate for yourself, like you said, like you were there seeing this alone and that, that’s a lot. So I want to celebrate that, that you, that you were able to be like, Oh no, you didn’t. No, you didn’t. And I’m not going to let you, right.

Kate: That’s, that’s a big thing is that I’m, I’m, I’m not going to stand for it. And that’s how I want to approach things now. I think the, the amount of times that people like me in a bunch of different [00:52:00] circumstances, whether you’re, you identify as female, whether you’re plus size, whether you’re Asian, whether you have a disability or a visual difference, we get knocked down.

For a bunch of different reasons and a lot of the times it’s it’s not gonna feel good or it’s not feasible to stand up for ourselves, but I think in this case I It wasn’t easy. I’m not I’m not by by far am I not saying it is it was not easy or comfortable

Michele: No. Mm hmm.

Kate: but I I wanted to do this for What I represent.

Michele: That’s amazing. Well, I want to end on a little saucy note, and I know that you wrote an article that was a little saucy. Can you tell us a little bit about that article?

Kate: For sure, so

Michele: put in the show notes after so that if people want to read it, they can access it.

Kate: Totally! So pulmonary hypertension has a [00:53:00] Association of Canada and they put out a magazine about twice a year. And last year they asked me to write a piece on sex and pulmonary hypertension, which of course I said yes to cause it’s really exciting for me. And it was really topical because I was unpartnered.

I still am unpartnered.

Michele: Hello.

Kate: a lot of times it’s like husband and wife duos. And that was just no longer a space that I was in. And I think as tough it is, as it is, it’s a story that needs to be represented.

And this is something that I had fought with myself for a long time is that, you know, a lot of the times it’s hard to be alone. I live alone in a studio apartment. It’s just me and my dog. And I don’t have anybody helping me to do my medical [00:54:00] tasks to to just lean on emotionally.

It’s just me. So I In kind of transitioning to being a single person, I was learning a lot about how to handle things in kind of like an intimate space. Which reading a bunch of the other entries from, couples who I know.

It wasn’t just about sex. It was, literally just holding hands while like we’re watching a movie. Like,

Michele: mean sex,

Kate: Yeah. Yeah. These are like, it’s such a broad, much more of like a broad spectrum have things to think about and, on the medical side, I will say like the medicine does like, I was told this basically as soon as I started my medications it’s going to screw with your libido.

It’s gonna it’s gonna make your birth control half as effective, , all of these things on the medical side can totally, mess with your head. So, for the first little while, I was [00:55:00] just like, oh, what’s wrong with me? Why, why am I not kind of acting with my, ex partner the, the way that I had used to?

And it took me, unfortunately , a really long time to realize it wasn’t me. It was, like, the medication was just doing a lot to my hormones and everything else that’s going on inside my body. But it wasn’t, it’s not impossible to find people who are attracted to you even though you’ve got some stuff going on.

I can still be that curvy to put it one way, Filipina disabled person and be desirable. There’s, you know, there’s still excitement.

There’s still attraction out there to be had.

Michele: Kate, can you tell us like, what were the three or a few things, like the top things that you addressed in your article.

Kate: So I really wanted to emphasize , it’s as awkward as you make it, , [00:56:00] you can, you can go in, you can have fun. It’s just nice to have fun and be silly. In things, not only intimacy related, but just in life, like say yes to, you know, being more open to like. Sexy photoshoots, say, say yes to feeling pretty in an outfit, that sort of thing.

Just, laugh and of move on. It’s not the only thing that’s really changing. You maybe take a little, a breath or a rest here and there and you kind of like make a, a little spot for, your extra accoutrement as, as needed. And again, consent is sexy. So I always like to say that.

A big thing to start off with with your partner who you’re being intimate with is set boundaries as to where what’s okay to be touched,, if you have limitations, if you have areas that you’re not so comfortable, then let them know. Because they will work around it.

They will find a way.

Michele: They will find a way and,

Kate: [00:57:00] Exactly.

Michele: like even all folks should be asking and, and I think this is something that as folks, who identify as women, we have not been really socialized to talk about what we need and how we want to experience pleasure and desire , we can feel that in our bodies and ourselves, even for ourselves.

I think that’s such a big thing too.

Kate: I think , approaching it with like an open mind and an open heart. You know, it’s, it’s not the end all be all of if things go a little bit silly or things go a little bit wrong, you know, just kind of Laugh it off and move past it. I, I have certainly gotten myself into, some tangles have happened here and there just a little bit and, that’s okay , if they’re worth spending time with, then they’ll, they’ll work with you through it.

Michele: Absolutely. Absolutely. has been such a wonderful conversation. I want to thank you so much for being so open and honest and vulnerable and [00:58:00] cheery and having the humor. I feel like we both take that really similar approach. I realized on day one of recording first podcast episode, that fishnets and fries is a bit of a tongue twister. Can you say it five times fast?

Kate: Okay, you’d think that I, the second time around, that I would have rehearsed for this. Okay. I

Michele: did not.

Kate: think I made it three in. Fish doesn’t fries, fish doesn’t fries, fish doesn’t fries, fish doesn’t fries. I don’t think I’m actually pronouncing nets, but that’s okay.

Michele: and I like the both of those words make us smile like fishnets. Like, how can you say fishnets without smiling? I know Mari and I, who was my guest on my first episode, we’re talking about how can you not smile when you’re like enjoying food with people? And which is where the name like fishnets are this.

Sexy vibes and fries. I mean, who doesn’t smile when they also say fries? So thank you for that. I would love to know as well, can you tell [00:59:00] us how do you like your fries? Are you particular about your fries? Do you have a favorite place? Certain dip? Lay it on us.

Kate: I am just a good old ketchup gal, but I think it’d be the tell of a good fry is I like them a little crispy, a little fluffy on the inside nothing soggy up in here. But if they’re, , from a diner or a fish and chips place, they kind of nail it. Yeah.

Michele: And I know you said that you have a favorite diner that you like to get your

Kate: Thank you. So there is a place called Bobby’s Socks in Maple Ridge, for anybody who is local to the lower mainland BC area

Michele: drove

Kate: that

Michele: day and I

Kate: What?

Did you?

Michele: mentioned it. I couldn’t stop and

Kate: Oh, no!

Michele: live in that area but sometimes I’m in that area for some things that I go,

Kate: Next time.

Michele: know and I was like that’s the place and I’ve probably driven by that place so many times and not noticed it but I just, you mentioned it.

Kate: I love a diner.

Michele: What’s so good about their fries?

Kate: They give you so many. There’s nothing more heartbreaking to me than for like a 16 burger place and you’re giving me like five, five, little like [01:00:00] strippings.

Michele: people.

Kate: Exactly! I’m just like, it’s a potato. Like, how much is it gonna cost you even in this economy?

You know?

Michele: How can our listeners connect with you, find out what else you’re up to, all of that good juicy stuff?

Kate: For sure, you can reach out to me on my Instagram is usually where I’m most active at SquishyLungSyndrome. And if you’re interested in working with me as a model or for any of your disability accommodation discussion, or you just want to talk Yeah, you can reach out to me there, you can reach out to, to my agency at Kello Inclusive.

Michele: I’ll put that all in the show notes. What is the one thing that you want our listeners to take away from this conversation today, Kate?

Kate: I hope that you walk away a little bit more open-minded. I would love if you uttered the words pulmonary hypertension just into your, general air vicinity. Because I think that’s like [01:01:00] a lovely way to create awareness and that you all breathe easy.

Michele: Thank you so much for being my guest two times. Two times. I really, I love seeing how you show up and I know that that can be hard to show up and. When you do, it always makes me smile. So continue to do that. I think more of us need to see that. Yeah. She just blew me a kiss. If you’re listening love blown kisses. please continue to do that whenever you have the capacity. And I definitely know that you’re out there making a difference because you have on me. Yeah.

Kate: that. Thank you so much.

Michele: You’re welcome. You’re

Kate: Thank you for having me again.

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Thanks for diving into another episode of Fishnets and Fries. If these conversations are feeding your soul, don’t forget to subscribe and share the love. Until next time, keep it hot, keep it real and keep it [01:02:00] fabulous.