In the premiere episode of The Politics of Disability podcast, the founder of Upgrade Accessibility, Mary Fashik and disability activist Syanne Bloom discuss the ableism in medical settings and in the pageant world, as well as navigating the pandemic.
The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.
In the premiere episode of The Politics of Disability podcast, the founder of Upgrade Accessibility, Mary Fashik and disability activist Syanne Bloom discuss the ableism in medical settings and in the pageant world, as well as navigating the pandemic.
The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.
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Mary: Hello, everyone, and welcome. My name is Mary Fashik. I am the founder Upgrade Accessibility and your host. I would like to thank you for joining me today, at the intersection of disability and politics. The road ahead can be a bumpy one, so buckle up and let's navigate this journey together.
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Hello, and welcome. Thank you for joining me today, Syanne. How are you?
Syanne: I'm doing OK hanging in there. How are you?
Mary: I'm well, thank you. Would you please introduce yourself to our audience?
Syanne: My name is Syanne Santana Bloom and my pronouns are she/her.
Mary: Thank you, Syanne. Is there anything you would like to tell our audience about you before we get started today?
Syanne: I guess, what can I say about myself? I am disabled, obviously. I'm a student--currently in college. I'm a signed model. I have two awesome dogs and an amazing husband. And honestly, I'm just happy to be here with you because I admire you so much. So thanks for having me.
Mary: Thank you so much and I'm so happy that we get to share this space together. I want you to tell our audience about...because we all have this journey that we go on when we're disabled--whether we are disabled from an early age or we become disabled later in life, we all are on this journey. Can you talk about a defining moment for you on your journey?
Syanne: Yeah. So I think the most defining moment for me was two years ago, which was when my disability became apparent because I was born with my conditions. I just didn't know that I had them--If that makes sense because I was misdiagnosed for so long until things got so bad that now, you know, I use supplemental oxygen, I use a power wheelchair, I have a port. And before a lot of my conditions manifested in behavioral sort of ways because it's neurological. So I was very anxious, moody, and so even though I had physical manifestations of my illness, like seizures and things like that, they still said that it was like psychosomatic, like not the seizures, but like some of the other physical symptoms I had, like nausea, diarrhea, all those things.
And so when I when I got so sick two years ago after I had a surgery and all of these things, of course, got amplified and came to the forefront when I found out that I have a genetic illness and I have an autoimmune disease and all these other things: it was like a--what do I wanna--identity crisis, if that makes sense, because I went from thinking all these years, the only thing that's wrong with me is maybe a few little physical things and the rest is just in my head.
And so that was defining because I had to change my entire life. I had to live in a different community now, one that I frankly didn't pay attention to because it didn't happen to me. You know, I thought I was fine. So that was the most defining moment for me was when all the changes came.
Mary: And I think it's important that the audience understands that when you are chronically ill, you go undiagnosed and misdiagnosed for years. Yes. I personally hate that. I had a journey like that. One of my doctors told me I was just getting old, or it was just in my head, I was depressed. And the truth of the matter is I'm chronically ill, and I went undiagnosed for years. And I'm like you. I was thinking, Oh, maybe it is in my head. Maybe I am making it up. And that validation of getting a diagnosis is something that's very rare for people in our community.
And I think it's important that we talk about that. I'm going to ask you about something I mentioned before we started recording. You do pageants. And I know as a little girl, I had this dream of becoming like Miss America, but you know, Miss America wasn't disabled.
I think there was a Miss America, who was deaf in the nineties, and that was a big deal. And they made such a big deal about it. Talk to me about the pageant world, and the ableism. And just in general:
How has ableism affected your journey?
Syanne: Yes. So first, I just want to mention I know exactly which Miss America you're talking about. I read her book. She had a book. It was amazing. And I read it during a time where I didn't know that I even had a chronic illness or anything.
And she, like, I emailed her and she emailed me back, and I remember it just like, you know, being so like in love with her because she was amazing. But anyways, as far as ableism in the pageant world--it's there.
Obviously, particularly, I think it's evident in the Miss World Organization because they have something called a fitness competition. And so you have to be able to physically run, do these little obstacle courses that they have. And when I was Miss Maryland and competed at Miss World America, which is the preliminary to Miss World, I had to do one of those. I had to do a fitness competition. And at that time I knew that I would pass out sometimes when I would exercise, and I also knew that I had osteoporosis. So I went in completely terrified, like knowing that I wasn't going to do well and I didn't do well.
And I'm sure that hurt my performance in the competition. I placed in the top ten. But I think having to prove how physically fit you are is incredibly ablest. And I felt in that moment when I had to do, you know, like 200 pushups and all these ridiculous things I felt in that moment like crying because even though I could walk and I could run and stuff at that time, it still, you know, my illness still affected me back then and I felt like it was unfair. I, like, brought it up to them one time where I was just like, "What if you're sick and you can't do this?"
And they didn't have an alternative. And so it's like, Oh, well, you lose points. And that is something I still think about from time to time. And aside from that, even just like some of them have the swimsuit competition. That could be seen as ableist, of course. Because first of all, it's like fatphobia, but also ableist because there's people who are on medications and can't control their weight or can't exercise like everybody else, or that's just the way they are, you know, like so those were the like most ableist things that I noticed when doing pageants.
Mary: Also, when you talk about swim suit, I think about people that have like a colostomy bag, and things like that. And like, they don't want to see mobility aids, medical devices, or even any scars from an operation. I'm sure if somebody had a scar because they had a horrific accident and they overcame something, then that would be OK.
Syanne: Yeah. Because that's inspiration porn. And that's OK. Like, as long as we are inspiring, then our disabilities and illnesses are seen as acceptable. I completely agree. And I don't know if you've heard of Madeline Duff, I believe is her name, and she just competed at Miss Earth.
She uses a wheelchair and she's very good. And I--I wonder if the reason she hasn't made it past like the top five is because exactly what you said. And you're right, they do seem to love inspiration porn because they have had people who have competed, who have a visible difference or, like, you know, use a mobility aid or are deaf. And they always single out those candidates for all of their media. But when it comes to the actual competition, that girl doesn't make it past maybe the top ten or the top 20. I've never seen one other than Madeline, you know, make the top five.
And I feel like it's they're exploiting these candidates because, like I said, they're using them on all of their media, they're the main people that everybody's talking about like, "Oh, wow, look, she's--she has alopecia or she uses a cane or a walker.
And then people are excited and it gets to the competition and that girl doesn't make it, but they sure as hell used it for views. So you're completely right. And I think that goes across the board with these pageants or just in general.
Mary: I think that's just how society is. Like we are not seen as valuable members, unless we're being inspiring. And while we are on the subject of ableism, let' talk about COVID.
Syanne: Mmmhmm.
Mary: Because if we don't talk about COVID, then are we really addressing ableism? So let's talk about COVID.
Syanne: Sure.
Mary: How has society's attitude surrounding COVID--and now, more specifically, the CDC director's attitude surrounding COVID affected you and your mental health? I feel like we have spent two years talking about the mental health of a non-disabled community. We have not addressed the mental health of disabled and chronically ill community, but we are going to here.
Syanne: Yes. How has it affected me? first of all, it's made me very anxious. I have to cross state lines to go to doctor's appointments because I live in a, you know, I live in Maryland, we have D.C., we have Virginia, and many of my appointments could be two hours away, which means I'm going to have to go get food, you know, and I can't get food from the drive thru all the time because I have gastroparesis and that food is going to make me sick.
So I have to go inside somewhere where there prep, you know where they're making food. And I've had to cancel appointments. I'm already starting to cancel appointments because I know people are not taking it seriously. I know the CDC only did that, cut it in half--you know, the quarantine time--because of capitalism.
And obviously, they're putting money over our lives. And I wish I could say I was surprised, but I'm not because this entire country has been built on honestly exploiting people, but it's created a lot of fear for me.
I'm worried about, like I said, going to appointments, canceling them because that hurts my health in the long run. I, you know, I have a couple of cavities. I'm supposed to get that fixed. I'm going to have to cancel my appointment next week because it's really, really bad in my area.
So bad that my county was on the news nationally because of how bad it is. We live in a super conservative area and the carelessness I have seen from people--people that I know, especially in, like church communities, has been absolutely disgusting and we're expected to stay home, right?
They can--they think we have to stay at home if we're if we are so scared. This is what I hear all the time. "If you're so scared, stay home. And it's like, I can't just stay home. I have to go out in the community.
I have to go to the doctor. And if I'm two hours away, I'm going to have to go get food. I'm going to have to use the bathroom, I'm going to have to walk in--not walk in--roll into some place.
And I'm going to be scared because we also don't really have any mask mandates. So people aren't all wearing masks in my community, and they're also not respecting space. It's like, I feel like sometimes these people get close to me in public on purpose, to be honest with you.
And it's been scary. I'm angry. I've expressed this to my husband about how terrified I am. I was just talking to him this morning about how we have to suffer, you know, me specifically and our community because they think that because they're healthy, that they have the right to go out and do whatever, and we're the ones who who, if we have the problem, have to suffer in every way possible, not just mentally but physically because we're canceling appointments because of them. So I'm very angry.
Mary: You are not the only one who's angry. I am very angry. I have talked about it a lot on my personal Instagram about COVID rage. And I have a lot of COVID rage. I'm very angry because like you, I am missing appointments.
Syanne: Yes.
Mary: And I shouldn't have to miss vital appointments because people won't wear masks. At the very beginning of the pandemic I went to the podiatrist and there was a man in there who was coughing and not covering his mouth. And I moved. And I was--and a lot of us were wearing masks prior to the pandemic because it protected us because we are chronically ill.
We're immunocompromised. And I remember this woman in the waiting room turned to this man and said. "You can get her sick if you do that." And I was so thankful for this woman I did not know to speak up, but I am going in that germ hole and risking my health.
But at the same time, I need to see my podiatrist. I need to see my cardiologist. I need to get all these things done. And I can't because, like you, I live in a conservative town where my roommate will go out and tell me. "Oh yeah, you were right. Like three people wearing masks when I went out." And people keep testing positive--in her office--for COVID. And it's like it's horrifying, and somebody just came back to work because the CDC shortened the time to five days, and they were still coughing.
Syanne: Mmmhmm. Yeah.
Mary: And I just want to say, and I know you agree with me. Disabled and chronically ill people have lives. We had lives prior to COVID. So why is it now we cannot live our lives freely? I don't--well I understand that people are selfish. but the fact that non-disabled people are putting themselves first is so infuriating.
Syanne: It absolutely is, it's it's something that I've seen pretty much everywhere even in medical offices because a lot of them don't want to do virtual visits anymore. That's something that I actually had to fight for a couple of times, and I feel like we're always fighting somebody, right? And it's like they only made accommodations when it applied to non-disabled people. Uh grocery. A lot of them did start doing grocery delivery to cars, but a lot of them took that stuff away where " We're not bringing it to your car. You have to come in, Oh, we can't give you a virtual appointment, even though there's no need for you to come in. Like, that's just our policy. You have to come in." And it does make me feel disposable.
I don't know, I can't even articulate how it makes me feel. It makes me feel like I don't matter, and that's bad for our mental health. Like to begin with, it's that feeling. Plus you add being isolated. I don't know how we do it every day.
Mary: That's what angers me. What angers me is nobody is talking about our mental health. Everyone is talking about non-disabled people's mental health, but no one is talking about our mental health and how we are having to navigate this pandemic.
And I've been saying for two years existing is exhausting.
Syanne: Yes, that's a good way to put it. It is. Everything's a battle. And we're tired. We're very tired. And if we don't fight, we are forgotten about, so we have no choice but to fight, and it is exhausting.
Mary: What would you like to say to the non-disabled community that is listening right now? What is the message that you would like to relay to them? who may as well say, like, what is the message that you would like to relay them?
Syanne: I think the biggest thing that I would say to them is you might think disability doesn't affect you or can't affect you, but at some point in your life, you or someone you love is going to become disabled. And that's why disability rights matters to everyone because it affects all of us. So I guess it would be just to support us. You know, I feel like we say this all the time and nothing happens. But I also want to just articulate that so many people supported the #FreeBritney movement, right? And those are disability rights. And as soon as that was over, they all disappeared.
And the pandemic is a huge disability rights issue. So I'm like, unless it's a white, cisgender celebrity woman or whatever, people care. But if it's, you know, the rest of us, especially BIPOC disabled folks, we're completely forgotten about and that affects the economy.
If people care so much about the economy then we have to--disability rights has to be at the forefront. If we if we don't have accessibility, we can't contribute. If we don't have access to health care, it's going to cost the country more. So think about that, think about that and - and advocate for us and wear a damn mask, you know, get vaccinated, wear a mask. That's my biggest thing.
Mary: And we want to say when we say, "get vaccinated," it's for people who are able to get vaccinated, there are people who are not able to get vaccinated. We are not talking to that group of people. We are talking to the group of people who won't do it just because they don't want to. Be considerate. Think about somebody other than yourselves. I said today on Twitter, "Show up for disabled and chronically ill people.
Show up before you are a part of our community. And chances are, you probably will become a part of our community. And then you realize that no one is showing up for you.
Syanne: Wow. Well said. Yes. Show up for us.
Mary: Syanne it has been a pleasure talking to you. Thank you for taking time out of your day to join me. Just thank you so much for being here today.
Syanne: Thank you so much. I had a wonderful time.
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Mary: Thank you for joining me for this episode of the Politics of Disability Podcast. As you navigate your journey, remember: disability is political; disability is messy; disability is not palatable--nor does it have to be.
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