Every Body Is Sexy

featuring disability activist and model Syanne Centeno-Bloom

brought to you by Janji

Syanne Centeno-Bloom is an artist, model, outdoor-lover, advocate, student, and piano player. She is also someone with 2 rare conditions who uses a wheelchair. 

The fact is that in so many ways, the systems and culture we live in seems to simultaneously erase disabled people and make them inhuman. From online harassment to navigating ableism in the modeling industry, hear from Syanne about how she’s reclaiming her sexuality and showing the world that the disabled community is sexy, too.

Featured in this Episode:

Syanne Centeno-Bloom

About Our Sponsor:

  • Janji aims to explore, connect, and give back by crafting comfortable, responsibly-produced running apparel guided by the places we run and the people we meet.

  • Get 15% off your next order of Janji with code SEXOUTSIDE at checkout

Additional Resources:

Let’s be friends:


Hosted by Laura Borichevsky.
Cover artwork by Hailey Hirst.
Music by The Wild Wild and UTAH, licensed via MusicBed.

TRANSCRIPT

Note: This transcript was lightly edited and created using a transcription service. As such it may contain spelling errors.

Syanne Bloom:

Okay. So I'm just going to say a bunch of random stuff… I'm a disability activist and artist. I play piano, so I love arts and music. I love the outdoors college students and, yeah, that's all I can think about.

Laura Borichevsky (narration): 

That’s the voice of Syanne Centeno-Bloom, describing herself in a few hobbies and activities. And-- if you noticed-- none of the things Syanne mentioned included having 2 rare conditions, or using a wheelchair. That’s because, like everyone with an illness or disability-- there is so much more that makes someone whole than just those qualities.

Something else Syanne didn’t mention is that she’s a model, and someone who has been using her creativity and passion for disability advocacy to use both her words and her talent for modeling to show just how essential sexuality is for everyone, including the disabled community.

A lot of the statements I’m making about disability right now might sound obvious-- but the fact is that in so many ways, the systems and culture we live in, generally speaking, seem to simultaneously erase disabled people and make them inhuman. And as you’ll hear from Syanne, it’s way past time we actively include chronically ill and disabled folks into the conversation when it comes to body liberation, sex, and sensuality.

So let’s learn together. I’m Laura Borichevsky, and this is Sex Outside.

Syanne Bloom:

I'm hoping that by doing what I'm doing, it's going to bring humanity back to us because we're literally like everybody else. The only reason that it's harder for us is because of inaccessibility. It's not because of our conditions

Laura Borichevsky (narration): 

To set some context-- Syanne began using a wheelchair in just the past 18 months or so, after complications from a major surgery revealed that she had a rare condition. Months later, doctors diagnosed a second. 

Syanne Bloom:

So I am diagnosed with Ehlers-Danlos syndrome, hypermobile type, which is a rare genetic disease. I am also diagnosed with auto-immune autonomic ganglionopathy, which is a very, very, very rare form of dysautonomia. There's only about a hundred cases a year. And what that does is it causes my immune system to attack my autonomic nervous system and damage parts of it. So because of that, I use supplemental oxygen and I'm in an electric wheelchair and have a chest port where I get infusions three times a week and we'll hopefully be adding a new one. I pretty much went throughout my life living what I thought was normal. I didn't really know that I was sick because I was misdiagnosed so much as just being mentally ill. And I wasn't diagnosed with anything that I have until about within the last a year and a half, almost two years.

So I was finally diagnosed with Ehlers-Danlos syndrome in, I would say mid-2020. And then I was just diagnosed with auto-immune autonomic ganglionopathy two months ago or three months ago. So I think it's interesting that, you know, I have always had these conditions and yes, I had health problems, but no one could figure out what was going on until it got so bad that I was in critical care and had complications from the surgery. And yeah, now that's landed me in trying to live my life as normal as possible. Despite the progression of my auto-immune autonomic ganglionopathy diagnosis, it's getting worse. And I was a model before this happened and I did pageants and I had a job. So I'm just trying to pick up where I left off as normally as possible.

Laura Borichevsky (narration): 

Syanne mentioned loving the outdoors-- in fact, some photos online featuring her outdoors in her wheelchair were one of the ways we first got connected to her. Her relationship with the outdoors these days looks different than it used to, but she’s still very connected to nature.

Syanne Bloom:

So before my condition progressed, I used to go hiking. I used to go fishing kayaking. I mean, I was outside all the time. And since my conditions have progressed because of my neurological damage to my autonomic nervous system, I'm now temperature and tolerance. So if it's over like 65 degrees, I can pass out and my oxygen levels drop and it becomes dangerous if it's under like 50 degrees, same thing happens. So it really gives me a limited time frame of days throughout the year when I can be outside. So that's been really hard, but luckily I live pretty close to the water. I can see it from my window. So I'm able to basically just see it the whole day, which you know, is not the same as being able to go kayaking on it, but it still brings me joy. I think if I was in a city or something, I would probably not be as happy as I am.

Laura Borichevsky: 

Yeah. I appreciate you sharing all that background. How does it feel to now have diagnoses when you didn't before? It sounds like you'd been told throughout your life at various points that there might've been a mental health condition, when in fact it was multiple rare diseases-- how does it feel to actually have a diagnosis now?

Syanne Bloom:

It felt strange, honestly, it was validation for sure, because I knew something was wrong and that's why I kept going back to the doctor. So it does feel good to know that what I have has a name and something else that has helped is that because I have a name for all of these things, I've been able to meet other people who have it, and I'm able to relate with them and see a pattern in their life. That's very similar to mine. And seeing that they went through know similar journey as me as being misdiagnosed, which happens very often with rare diseases, especially Ehlers-Danlos syndrome, which tends to be misdiagnosed as a mental health condition,

Laura Borichevsky (narration): 

Something Syanne and I spoke about early on in the production of this episode, as well as something she shares about through her own social media platforms, is how wheelchair use is something many able-bodied folks assume is equivalent to paralysis. In fact, like most processes and conversations involving our bodies-- it’s really not that cut and dry.

Syanne Bloom:

I believe that a term for that would be dynamic disabilities. So there's a lot of conditions that require a wheelchair only sometimes. So that would be like a part-time wheelchair user. I would consider myself full-time because I have to use it all the time. I mean, the only time I don't is when I'm walking to the bathroom, which takes me about 30 seconds, but a lot of people don't know that I definitely did not know that until I became disabled. And I think it's really important for people to know that 90% of people who use wheelchairs have some use of their legs. So there's only 10% who don't have any use of their legs. So most people who use them are able to have some movements for me, my legs work, but my body doesn't, you know, cause my normal functions to work correctly. So my heart rate is really high all the time.

My oxygen level drops if I do any type of movement, not just walking. So that's why I have to use specifically an electric wheelchair. But I think it's important for people like us to be seen. There's a lot of people, I would say most people aren't aware that there are people like me who are the majority of wheelchair users who have some function in their legs. It's not just for people who have paralysis it's for anyone with mobility issues who can't walk for more than a few minutes or so, or who need them sometimes like multiple sclerosis, for example, which is similar to what I have. You have relapsing episodes where you need it, and then you have recovery episodes where you don't need it. So I think that can help people understand more when I explain it that way for me, my condition is progressive. I'm not on any treatment that's been effective, so I'm more likely to worsen and have to use it forever.

Laura Borichevsky: 

Well, and with your background in modeling and like you said, yeah-- you won Miss Maryland at one point, right?

Syanne Bloom:

Yes I did. That was a lot of fun.

Laura Borichevsky: 

I guess I'm curious to hear about that progression as well. Cause I picked up on what you said when you first introduced yourself to like, you're kind of picking back up where you've been and I've seen some of your posts on social media about like, just keeping in touch with your sense of sensuality and sexuality. I think you made a magazine cover with yourself on it, which is amazing. And like, we should be seeing more of that in the world. That should be a thing and it's so sad and unjust that it's not. And so I guess I'm curious to hear about your progression when it's come to your career and how you look at that now coming from a background of modeling and pageants.

Syanne Bloom:

So it's definitely been different relearning how to pose and always being in a seated position versus having more ways to pose when I was able to walk and stand more. So that's been the most challenging, I think is just finding new ways to pose and make it interesting every time. But I've also found that to be really fun. I like a little bit of a challenge when it comes to modeling. I'm definitely more confident now, believe it or not. Then I was before the onset and progression of my conditions. I don't know why that is. I think it's because I've had to learn how to love my body, despite it pretty much turning on me. And it's definitely a lot more different. I see my other friends who are models being able to walk down the runway and when I get hired to do runway, I know it's going to look different for me, but the thing is the whole world looks different. So I think I would just be representing a lot of people around the world.

Laura Borichevsky: 

Yeah, definitely. I know that you had an experience too shortly after you got out of the hospital and were a new wheelchair user when it came to modeling. Is that something that you were interested in sharing today?

Syanne Bloom:

I would say maybe two months after I got out of critical care and became a brand new wheelchair user, I had decided I wanted to go back into modeling. So I applied to be a model for a fashion show called DC fashion week. And when I applied, I had to do an application. There was like no model call for us or anything like that. We just had to send in an application and then they would invite you to walk or, you know, present yourself. So I got a rejection and I just wanted to know, you know, what exactly was the rejection for? How can I improve? So I sent them an email and very kindly asked, “how can I improve so that I can be in the next show?” Or, you know, “why was I rejected? I want to be better.” And I had already had a feeling that it had something to do with my wheelchair.

So they said that because I'm in a wheelchair, I was considered to be a liability and that designers do not want models sitting on their gowns. And that's the reason why they rejected me. And that was the first time that I experienced discrimination like that due to my disability. And it was jarring. It kind of woke me up and introduced me to a world. Most people don't see. And that's kind of when I really started pushing hard to become a model and I ended up getting signed to two agencies right before COVID and yeah, I think it goes to show that I don't think all designers think I'm a liability, but it's sad. A lot of people out there in the industry do think that, and that's what I'm trying to change.

Laura Borichevsky (narration): 

And through trying to change things, Syanne has been building up a network of folks who, like herself, have disabilities and are looking to see change, especially when it comes to representation in the modeling world. Last year, Syanne even led a project to create a 2021 swimsuit calendar featuring all disabled folks, which you can still find and purchase online.

Syanne Bloom:

So I just started reaching out to people on Instagram: people that I thought would be great for the calendar who were already activists. And that's kind of what I was looking for. Not just models, but also people who are activists for the disabled community and just started messaging people. And they were happy to be a part of it. And I very quickly got 11 other women with all kinds of disabilities and it turned out really well. I'm really proud of it.

Laura Borichevsky (narration): 

We’re just digging in-- there’s a lot more to talk about. So we’ll be back to hear more from Syanne, after this.


AD BREAK - About our Sponsor, Janji:

  • Janji aims to explore, connect, and give back by crafting comfortable, responsibly-produced running apparel guided by the places we run and the people we meet.

  • Get 15% off your next order of Janji with code SEXOUTSIDE at checkout

Syanne Bloom:

I would say that I always wanted to do that, but I was very insecure and it didn't feel good enough. And after it happened, I just was like, “Well, I only have one life and this is what I want to do. And who cares what anyone thinks?”

Laura Borichevsky (narration): 

Something that’s clear when you first look at Syanne’s photos online is that she’s intentionally building a community that embraces sexuality, especially within the disabled community. And as you can imagine, like everything else in her life, this has only evolved more since receiving her diagnoses in the recent past.

Syanne Bloom:

So I started embracing it more actually after I became disabled and got over that fear of people saying terrible things, which they have, but you know, at the end of the day, I'm in charge of how I feel about me. So I went ahead and did it anyway, and it's made me more confident as a result. So I, I mean, I wish I would have done it sooner because it feels great.

Laura Borichevsky: 

Yeah. I imagine too, it's probably fostered some more connections as well with other folks who might feel like for whatever reason, but I'd say perhaps especially folks with disabilities, that see your content, like, “Oh, I can also embrace that too.” Cause I know like there is this really unjust cultural idea that disabled people can't be sexy. And that's just so false.

Syanne Bloom:

Yeah. I've met a lot of other women, some that are already doing it, a similar thing as me and others who want to do it, but are afraid of what people think. And I think it's interesting that we see, you know, influencers who are able-bodied doing that and it's socially okay. But when we're doing it, we get a lot of hate for it. So being able to have other people to connect with when I do feel, you know, a little bit down has been really uplifting for me because when they are the ones who say like, “Oh, we really appreciate what you're doing “and thanking me for what I'm doing, it's like, okay, well I'm doing the right thing.

Laura Borichevsky: 

Yeah. The way I found your account was from a photo shoot that you had done in your wheelchair at the beach and those photos are beautiful. And I think the post I had found was not your original post, but it was a follow up because you had said that you received a lot of the terrible comments as a result of posting those photos.

Syanne Bloom:

Oh yeah. And that happens, I would say, almost every day I get something like that. And the thing is that I didn't get anything like that before I was disabled. So I just think it's interesting that that shows that there is ableism-- as someone who wasn't disabled and was a model and didn't receive that. And then someone, you know, being that same person and just having a disability, be the difference and then receiving all that is just very evidence of discrimination and ableism in society.

Laura Borichevsky: 

Some of the things that stood out to me when I first saw the photos of you out on the beach that you had shared some of the comments that were like very inappropriate, very ablest. And one of them that stood out to me was something to the effect of like, “How did you get out on the beach?”

Syanne Bloom:

Yeah. I know which comment you're actually referring to. What they said was, “well, you got to roll around the beach. can you?” I just laughed because disabled people go to the beach. I think when I first started getting these, it was hurtful. But now they're kind of funny, you know, not funny that they're ableist, but just like these people who say these things, had it been a real question, I wouldn't have responded as aggressively to them, but saying, “well, you got to roll around the beach-- can you?” is, well, in order to model on the beach, this is what they're saying: you know, in order to model on the beach, you have to be able to roll around. You have to be able to pose. And they're implying that because I'm disabled. I can't do those things, but I can. And that also shows that people only think of models as being able bodied when models are trying to get us to buy the products.

And we're real people too, you know, one in four Americans are disabled. So if they're not representing us, it's not representative of Americans. And I just have to mention like ableism prevents a lot of brands from hiring disabled models and lack of representation causes ableism. So it just becomes a cycle, you know, where it just keeps going in circles and circles where one causes the other. And that's why it's so important for people like me to be seen and to go on social media and make themselves seen because accessibility itself won't improve unless we're represented, and people see us.

Laura Borichevsky (narration): 

Syanne’s right-- part of dismantling ableism includes wider representation of disabled folks in popular media. And although we know that representation can help establish norms within communities and cultures, it goes way beyond that. It also begins to help establish safety-- which is something Syanne knows about firsthand too, as she’s taken on online harassment not just from comment sections on her own profile, but in other established places found in some of the dark corners of the internet.

Syanne Bloom:

There are entire forum communities dedicated to people with disabilities and people accusing them of faking their conditions. Or, you know, I have a friend that was on that site and she was accused of trying to cut off her own leg, cause she's an amputee. It's just really bizarre stuff. I'm on that website virtually any disabled influencer you can think of are on those types of forums. And you know, I've run into people and I've spoken to some of my friends who are also disabled who have completely shut down their Instagrams because of these hate groups. And you know, I'm not going to do that, but I just think it's interesting to say like I've only ever seen that, like that towards people who are chronically ill or disabled. And I just can't believe those things exist. It's horrible. And they shouldn't exist.

Laura Borichevsky: 

Yeah. Well, and in a society where it seems like the two options that generally happen, like in an ableist society, at least as I've seen it play out with my lived experiences-- disabled people are either treated as though they're invisible or they're completely dehumanized, like you're saying. And people are accusing them of all kinds of things that are so wildly inappropriate and false.

Syanne Bloom:

What I heard was on one of these forums was that I'm over the top and I'm just like, well, no, I'm actually acting exactly as I was before. It's just, I'm disabled now. And I think people believe that if you were sick, that you're supposed to just be laying in bed, you can't do your hair. You know, you can do your makeup. Like you can't get dressed nice. You can't do things. And in some cases, yes, there are days when I can't do things, but I'm still a young woman, you know, I'm still 29. I still am exactly the same person I was before. And like you said, it's just part of dehumanizing people with disabilities. And I'm hoping that by doing what I'm doing, it's going to bring humanity back to us because we're literally like everybody else. The only reason that it's harder for us is because of an accessibility. It's not because of our condition.

Laura Borichevsky: 

Yeah. What do you do for yourself or within your community? What uplifts you during times like that, where you are receiving comments from people, or if you're feeling down, are there things that you remind yourself or think about, or look to that uplift you a little bit?

Syanne Bloom:

I just tell myself they're behind a screen. They usually don't have their real names and that they're irrelevant. And if it bothers me that much, it's way too easy to just block them or delete the comment. I just really have tried to practice learning how to tune out all the negativity and all the hate, because if I'm going to keep doing this, those things are always going to be around and maybe are even going to get worse. So I've had to try to learn how to cope on my own. And I've been getting really good at it. I can look at a mean comment and it doesn't do anything to me anymore where before it used to make my stomach drop a little bit, you know, so it's a lot of meditation and I mean, I'm in therapy too. And that helps. I play piano if I'm upset. And I like to go outside when it's nice enough for me to go outside and play with my dog. So those are some of the things I do if I am feeling, you know, bothered, but usually I just try and move along.

Laura Borichevsky: 

Yeah. That's the best thing sometimes I suppose, that we can do right? Like remain focused on what's important.

Syanne Bloom:

Yeah. And it takes practice.

Laura Borichevsky: 

Yeah, absolutely. I never asked you this about those beach photos, but what inspired you to take those photos at that location to begin with?

Syanne Bloom:

So I actually entered the Sports Illustrated Swimsuit Search. I guess it's been almost a year since I entered it, and I didn't see anybody like me and I wanted to show that we could do it too. Sports Illustrated claims to be an inclusive brand. And they've been inclusive to a lot of different body types, but I really haven't seen anyone like me featured or get picked for their swimsuit search. So I was just trying to prove that people with disabilities can do the same thing and look just as good.

Laura Borichevsky: 

Yeah, absolutely. I guess I'm curious to know a little bit more about your journey when it comes to your sexuality and feeling sexual in your body, like having a sense of who you are at this point in your life?

Syanne Bloom:

To be honest with you, it's a little bit mixed. It kind of depends on how I'm feeling that day, even physically and not just mentally, but some days I feel sexy and great. And then other days I feel really embarrassed if I have to wear my supplemental oxygen, you know, when I'm trying to be intimate with my husband or something. So it varies from day to day. I would say it's something I'm still working on. My body's changed a lot in the last year and I can feel comfortable for myself. But sometimes knowing that my husband saw me the way I was before can make me feel a little bit insecure.

Laura Borichevsky: 

Yeah. It's interesting to hear that reflection, because like you said, your husband is totally into you, right? Your husband is super attracted to you.

Syanne Bloom:

[ laughs ] He's had no issue with it at all. It's just me.

Laura Borichevsky: 

Yeah. And I think a lot of people at I'm going to generalize here for a minute, but, I mean, everybody struggles with different types of body image and what we look like and what people wish they looked like or how they wished they presented in the world. But I think especially with women, a lot of us experienced a lot of that anyway, and then layering on top of that now where you're at with using a wheelchair. And like you said, having the port that you use three to four times a week and having an oxygen tank and like that all kind of has, yeah, changed the landscape of your body and your environment, I guess, that surrounds you too.

Syanne Bloom:

Yeah. It's been, um, different, you know. I'm also on steroids. So I've actually gained about 40 pounds since a year and a half ago. And it's not so much the weight, the weight doesn't bother me. I honestly think I look better like this. It's all the devices that I have now. And you know, he like will make a move on me and I'm like, I feel insecure because I'll have my port access or I'm having a day where I can't breathe without my oxygen. And he doesn't see it. You know, he still sees me as beautiful, but I, I just feel, I don't know how to describe it. Just, uh, embarrassed. And as I said before, I don't feel that way when I'm looking at myself in the mirror, I still think I look great, but I think it's just one of those things where there is that little bit of ableism in my own mind where I'm like, “My husband's not going to find me attractive because I have a chest port and I have oxygen and I'm going to look sick.” And that's an issue that I'm trying to work on and trying to reduce my own ableism that society has put in me, you know?

Laura Borichevsky (narration): 

A lot of us are in this same space, most likely. There is so much to unlearn, especially when it comes to systematically marginalized and under-amplified groups, and to be honest disability is not only one that I personally feel is not only talked about less in this specific moment in time, but is also one that any human could become a part of at any moment, like in Syanne’s specific case.

And when it comes to sex, there seems to be an especially strong current in society to remove disabled folks from the narrative, or-- at most, make it a topic that’s addressed as a vouyeristic curiosity, and not as a gateway to deeper conversation about our bodies. Syanne opens up about this very honestly when it comes to sex, having experiences both as an able-bodied and a disabled person throughout her life.

Syanne Bloom:

You know, I'm going to put myself on the spot here too, and say that before I became disabled and all this happened to me, I kind of wondered the same thing. And that's just kinda ableist for me to have thought, like, “is it going to be different to have sex as a person with a disability? Is it different? What does it look like?” And then, you know, we do it. And it's exactly the same, pretty much exactly the same. One of the questions I've been asked as a person with the disability is “How do you have sex?” And I've been asked that even by friends and I can't believe people think it's okay to ask that, but I think it's just like, we're all taught to believe that people with disabilities are incapable and are almost subhuman. So we don't do things like have sex, but yeah, like I said, I, you know, it might not be interesting, but it's exactly the same as anyone who's able-bodied and can have sex exactly the same.

Laura Borichevsky: 

And too, there are so many people who are able-bodied who like prefer to have props or are more comfortable, or their bodies are organized in such a way inside that, like they need other things to assist them with sex, even though like they may present completely able-bodied. So like, it is, like you said, very intrusive and inappropriate, but it's also such an interesting assumption that someone would think that there has to be something else involved or it has to look a lot different when like everybody is having sex so differently anyway.

Syanne Bloom:

Right. That's the thing. What is normal anyway? What does that look like? It's all different. I mean, I don't even know how to answer that question. I actually said to somebody, “Well, how do you have sex?” They just were like, looking at me and I'm like, “Exactly. What do you mean?”

Laura Borichevsky: 

[ laughs ] That’s such a good question to ask back.

Syanne Bloom:

And then they look at you like, “Wow, why would you ask me that?” But you can see them think like, “Oh crap I should not have said that.”

Laura Borichevsky: 

When it comes to like inaccessibility with sex, I know you've also recently modeled for some more adaptive lingerie and underwear and stuff. Is that something that's been relatively new or is it just something that's now made its way more onto social media? Because I hadn't known that much about adaptive clothing, I guess, on social or that’s easier to find. And that's also part of my privilege and my areas that I just haven't been looking into, which is on me. But I guess I'm curious to hear more about that as well when it comes to accessibility.

Syanne Bloom:

Yeah. So honestly I would say I was privileged too, before I started using a wheelchair and needing those products. Cause I didn't see them either, but I think a lot of them have been around for a couple of years, at least. But it does seem like those types of brands are opening up more and more and more, which is great. And having visibility of it on social media, we'll also normalize disability and make people see that where people too, who use underwear and wear lingerie. So I'm excited to be seeing more and more brands doing this.

Laura Borichevsky (narration): 

Clearly, there is a lot to learn-- about sex, and about each other. If you, like me, are fairly new to learning about disability where it intersects with sexuality-- you’re in luck. There are some great resources in our show notes with books, articles, and folks to follow online, including Syanne. And-- speaking of Syanne, she has some thoughts on how to further break down your own ableism when it comes to finding and engaging with the disabled community, online and otherwise.

Syanne Bloom:

Something that's been helpful for me... It's not like a reference to anything else, but getting dressed up makes me feel really good. And I think when other people see a disabled and sick person looking really good, it kinda makes them think that people with disabilities are normal people. We get dressed up too.

Laura Borichevsky (narration): 

Thank you so much to Syanne Centeno-Bloom for her time and insights for this episode. You can find Syanne on Instagram and TikTok @syannebloom-- and make sure to check out the links in our show notes for more resources, including the disabled swimsuit calendar Syanne put together for 2021. It’s really beautiful.

And don’t forget-- you can catch full episodes of Sex Outside every other week on Thursdays, and on the opposite weeks, you can hear brand new Nature Quickies, which are short, 5-minute dives into specific, practical topics about our bodies and the outdoors-- so stay tuned to catch a new one next Thursday. In the meantime, please consider supporting the show by leaving us a 5-star review on Apple Podcasts, making sure you’re subscribed, or by sharing this episode with a friend you think might like it.

We also have a pretty great merch shop online. There are shirts, stickers-- even underwear. To see what it’s all about, head over at sexoutsidepodcast.com/shop.

Thanks again to our sponsor, Janji.

Music is by the Wild Wild and UTAH. 

I’m Laura Borichevsky. Thanks for joining us. Until next time!

Full EpisodeLaura BorichevskyComment