Ep 40: Celebrating Pride

Join host Steven on this special Pride episode of *Pride and Possibility*, where we celebrate the vibrant intersection of the LGBTQIA+ community and disability pride. Steven is joined by three incredible guests: Shelby, Emily, and Jordanne, who each bring unique perspectives and experiences as individuals living with disabilities and proudly identifying as part of the LGBTQIA+ community.

In this heartfelt and empowering episode, Shelby, Emily, and Jordanne share their personal journeys, discussing the challenges and triumphs they have faced in navigating their identities. They delve into the importance of representation, the power of community, and the ways in which their disabilities and LGBTQIA+ identities have shaped their lives.

Listeners will hear inspiring stories of resilience, advocacy, and joy as our guests talk about what Pride means to them. This episode is a celebration of diversity, inclusion, and the strength found in embracing all aspects of one's identity. Tune in to *Pride and Possibility* for an uplifting conversation that highlights the beauty of living authentically and the importance of solidarity within the LGBTQIA+ and disability communities.

Celebrate Pride with us and discover the incredible stories of Shelby, Emily, and Jordanne as they inspire us all to live with pride and possibility.

#PrideAndPossibility #DisabilityPride #LGBTQIA+ #Intersectionality #celebratediversity 

HIS PODCAST IS NOT JUST FOR PEOPLE WITH SMA This content is not solely for the SMA Community. We hope this discussion will be helpful to everyone. ❤️ 
You can contact SMA UK on the following social media platforms ⬇️⬇️ 
▶ | INSTAGRAM: https://www.instagram.com/sma_uk 
▶ | TWITTER: https://twitter.com/SMA_UK_ 
▶ | FACEBOOK: https://www.facebook.com/SpinalMuscul... 

If you would like to participate in any of our podcasts please email gary.edgecombe@smauk.org.uk
 
Living With SMA Disclaimer: The views expressed in this episode belong to the Podcast Participants and not the charity SMA UK, its partners, or its employees. All opinions expressed by the Podcast Participants are solely their current opinions and do not reflect the opinions of SMA UK. The Podcast Participants' opinions are based upon information they consider reliable, but neither SMA UK, nor the companies with which such participants are affiliated, warrant its completeness or accuracy, and it should not be relied upon as such.

Transcript

0:04

Hi everyone and a big welcome to the Living With SMA podcast. We talk about all things spinal muscular atrophy related, but topics discussed are not exclusively for individuals with SMA, so there should be something here for everyone. We also do things differently. For starters, our charity SMA UK uses different hosts and everyone involved gets the final say in the creative process of making these episodes. We cut through the jargon and the content is accessible for everyone. All the stories are individual and we are committed to sharing as many different perspectives as we can for our listeners. So if you're listening to this and have a burning desire to talk about a particular subject, then please reach out to us on our social media channels or send us a quick email. And remember, no topic is off the table. If there is something the SMA community wants to talk about, this is the place. We really hope you enjoy the podcast and please do connect with our charity and share your comments online. Let us know what you think. From all the team at SMA UK, thank you for listening. Hi everyone and welcome to the latest SMA podcast, and we're here on a sunny day in June to celebrate Pride month. So, Pride month was inspired by the Stonewall riots and which happened back in 1969. And we've had lots of celebrations already this month and we were about midway through already, so really great to be here and to present. So just a bit of an overview for me. So my name is Steven Jones. I have SMA Type 3. I work in civil service and do quite a bit of work with SMA UK. And Pride month is really important to me because I think it just enables us to sort of pause and be thinking, actually, this is great how far the LGBT+ community has come since the Stonewall riots. And really to celebrate difference and intersectionality even more than we already do all year round and so really delighted to be here and to celebrate this month. And also my pronouns are he/him. So, Jordanne, should we come to you? Thanks Steven. My name's Jordanne. I have SMA Type 2, and my pronouns are she and her. I'm part of this podcast just because I'm in the LGBTQ community and love going to Pride. I love talking about all things LGBTQ+. Thank you and great to have you. Shelby. Hi, my name is Shelby. I'm from Leeds and my pronouns are she/her. I'm a Black woman with blue braids and a blue really little top on. I also have SMA Type 2 and I've joined this podcast because I also love going to Pride. I'm also a queer woman. I just love talking about LGBTQ+ things in general and just read a little through it. Great, thank you Shelby. And then finally, Emily. So I'm Emily and I have Pompe disease. My pronouns are she/her. I'm part of the podcast because I like going to Pride, and I identify as a lesbian and I'm disabled. Great. Thank you, Emily, and great to have you with us. And I love how everyone really loves going to Pride. I remember when I went to the Pride in London, it must be five years, six years ago now. And all I can remember is trying to get through this massive crowd of people in my wheelchair, and it was like an absolute nightmare, but obviously the parade was great and the music was great, and it was really good to go along. So I'm glad others go to lots of different Pride events. So we're just going to kick off with hopefully a fun opening question about your sort of Pride anthem or song. So what song always reminds you of Pride or really gets you in the mood to start celebrating? Should I kick this off? Yeah, go on Jordanne. My song of the summer will be HOT TO GO! By Chappell Roan. Chappell Roan will be the queen of gays, I can see it come in for the summer, so that would be my pick. Brilliant, how about you Shelby? I feel like, a song that reminds me of Pride. Sorry, I've got two answers. So the song that reminds me of Pride is something like, It's Raining Men, like that plays like everywhere, constantly. But I think like my favourite queer song right now is Lunch by Billie Eilish. Which is probably a really basic answer, but it's just so good. She's brilliant, isn't she? She's very very good. And how about you Emily. Yeah, on the gay scene in Swansea, it is quite a lot of Lady Gaga, so anything Lady gaga just reminds me of Pride. No, brilliant. Thanks everyone for your answers there thats really really good. And I don't... It's interesting. I don't really have a Pride song that comes to mind. I mean, I always think of like Cher or like really big party songs just celebrating and having a good time really. So that's probably what I would go to all of the time. And so we spoken a bit about, actually, all of you who have been to Pride events, you love going, you love celebrating. And can you just tell me a bit more about, I suppose, how you celebrate Pride Month, what parades you attend, and how do you find the accessibility of them. And Shelby, I was going to come and you first on that one, if that's okay. Yeah, sure. So I haven't been to many Pride events, but I did go to Lee's Pride a couple years ago with my friends and it was so much fun. There was a lot of drinking, a lot of dressing up. It was just very chaotic trying to get around and from like one part of town to the other just 'cause the crowds were like so intense. But I feel like Lee is a quite good show for disabled access anyway. So there was always people around to like... Well I said always at certain points there's people around to make sure that I was safe and to get me to where I need to go, which is amazing. But they need to have that like everywhere, not just in one place and I also gotta go to the toilet, but that's nothing new. That's really frustrating. Was that because they didn't have any facilities there? Yeah, there was no changing places I'd have to go like right to like the top of town to go pee and I was like, I'll just hold it. That is just... It's so annoying. That still happens, but I'm glad you still were able to have a really good time and celebrate it. Yeah. Thank you. And how are you Jordanne? So before we move on from the toilet thing, I've been very lucky to attend a couple of prides now where they've had a RevoLOOtion van it's revolution with LOO UK and it's effectively a changing places on wheels. So keep an eye out for those at any local Pride events and contact Pride organizers to get them involved because they're fantastic resource. I love it. That's so good. Sorry. Yeah, no, they're fantastic because it takes away all that stress. You don't need to think about where you are. You can have as many drinks as you like. Not that I do that. It is fantastic. But I go to different scales of Pride so I go to my local one in my town, very small and not always quite the most accepting crowd. So that's an interesting dynamic, and then I've been to, I think the biggest I've been to is Birmingham, and that's got a little bit too big for me now. It's a bit too much of a party scene. I like the balance of going around the stores, getting lots of free pens but also enjoying some good music. That is brilliant. Thank you. And tell us a bit more about when you said they weren't the most sort of accepting or welcoming crowd there. I live in quite a small town and they've got a lot of traditional views, if that's the kind way to say it. So we have just people adding comments and giving us some glares. But the organizers do a really good job to sort of separate the area and make sure that there's a police presence and things like that to keep us safe. No, that's a shame that happens, but I'm glad there's element of safety there. So thanks for sharing that Jordanne. And how about you Emily? I've been to quite a few Prides over the years. The best Pride I've ever been to was in Philadelphia. I was lucky enough to go there. My auntie lived there at the time and Betty were playing from the award, so that was like the highlight of my holiday. But normally it's just like Cardiff Pride. Swansea is not amazing at holding a Pride. The Cardiff's always a good atmosphere and there's a lot of bars that end up... The end of the night. It was quite easy to get on the train there and back and like Jordanne said with the lift, the van that's got the toilet, they only let you on as well. So it's like, it's only for disabled people so you don't get randoms in that and you waiting in there just for the toilet. So, yeah. So just... Yeah. Emily, thanks for sharing that. I think it's been really interesting there 'cause we've spoken about some of the challenges about being disabled and accessing Pride mostly around the toilet facilities. Plus also some of the wider challenges of actually some people in society still not agreeing with Pride or still not sort of accepting it in lots of ways. And I suppose do you think that disabled people are sort of welcome in the LGBT+ community? And Shelby, should we come to you again first? Yeah, sure. I do feel like we're welcome to an extent, but as you are aware, Pride isn't the worst accessible. So I have seen like a lot of disabled people, especially those that are still like shielding for COVID, they're part the odd events, which is good, but they also shouldn't have to do that. Like, they should be welcome into spaces that they feel safe and open, like, yeah. So yeah, I think they're welcome to a point, but I feel like as like a disabled Black, bisexual woman, kind like in a lot of different intersections, getting comments that are like, God, has punished you twice 'cause you are gay and Black and disabled, and like all stuff like this. So I feel like people need to be more aware of the intersections and probably more accepting of all queer people. No, definitely. I think it's a really, really interesting point how all of the intersectionality interlinks and how that sort of changes your experience of the overall month and the impact of it. And how about you Emily? How have you found about that sort of acceptance of disabled people in the LGBT+ community? I think I've had quite a good... Like a positive experience with it. Like one of our clubs in Swansea, the toilet is upstairs and it's like I've had... Always had people are like, I'll just carry you up. And they mean well. Like obviously I'm not gonna take them up on that when they're drunk, but it's one of the... I think it is a good community to be disabled in 'cause it's such a small community as well, so you kind of get to know everybody and then they look out for you then. Yeah, that was really positive, Emily, thanks for sharing. And a slight detour, but I remember at university someone carried me and my electric wheelchair, which must have weigh a ton up like three flights of stairs so we could hang out in someone's like kitchen or room. And looking back I was thinking why on earth did I let them do that? But... I've been carried up the stairs so many times by like anyone who will help, the bouncers just to get me in the club because there's a limited gay bars. So it's just like, yeah, we'll get you in. Yeah, that's really good. That sounds really supportive. So how about you Jordanne? I'd say that I've had mixed experiences of acceptance. There's a lot of people that will just say that we're happy to see you here, but there's also people that take it too far and you become their inspiration. It's like, oh, it's so lovely to see you out in a bar. Or they're like, oh, are you here with your friend? Are you here supporting your friend? It's like, actually no, I'm gay and I'm here for a reason. So that's sometimes difficult. And sometimes I find it hard to access spaces too. I've not been carried up any flights of stairs drunk or sober. But I have struggled to get through crowds before. Lots of drunk people falling over me. And that can make it feel less welcoming for sure. Definitely. And I think my experience have been is I find the overall community very inclusive, very supportive, but still within, let's say the gay community, there's still quite a lot of like stereotypes. So you must do certain things, so you must go, I don't know, clubbing or something like that and you must look a certain way. So I've sometimes found that a bit sort of challenging that even though this is really inclusive sort of a networking community, there's still within that community quite ingrained stereotypes sometimes about actually what a gay person should look like or should be like or what they should do on like the weekends and all of that stuff. So I found that to be sort of one barriers. And Jordanne, I wanted to pick your point up about when you said that some people sort of said, why are you here? Sort of thing what... Why have you come along? You with your friend? Would you... Would you say lots of people assume that maybe you don't have a sexuality or maybe even that you are asexual. Do you think that's sometimes an assumption. As a huge misconception, I think from disabled community that we are completely asexual beings. We're not interested in dating and romance and sex and things like that. Which is obviously what Pride's all about. It's about celebrating those things. No, definitely. How about you Shelby? Have you had any experiences of that? Yes, I've kind of because I've recently got into my first relationship with a woman even though it's long distance. And I still think people are rough like close people, like in family wise are still struggling to accept that or they'll fall into that awkward in between where they can accept it. But they won't wanna talk about them or they will ask about them and then that could be a little bit difficult. Compared to when I was with a guy, it was very different. I know it's like really interesting conversations with people. Sure. It's really interesting. I remember once I was out with one of my friends, we actually went on holiday to Belgium and they met someone and that person was like, oh you are a really good person. Sort of like being... Supporting Steve on this holiday and all of that stuff. And I was thinking, well actually like you don't know my relationship there. You know, they were just a friend but it could have been more. And I just think assumptions like that could be really interesting. And how about you Emily? How's your experiences been? Mine have been more... The negative ones have been more from straight people. So she's a lesbian, how does she have sex when she's disabled? And I don't know, I'm just like, you're straight so you don't really know how it works anyway. But I haven't had negativity from the community really. I think I've been quite lucky. Whereas Swansea is quite a small gay city and again, and then I don't know, everybody just knows each other and I haven't had that negative where... No. I've felt when I go out. It's not really like, why are you here? They all knew why I was there. That's really good, Emily. And I think it's really interesting how we've all had a real variety of experiences here, which is really, really, really positive. And quite a lot of them are sort of thinking about breaking barriers, sort of defying stereotypes as well. And do any of you have a potentially funny or empowering story about when you've actually done that? So when you have sort of challenged the status quo, or challenged someone about a particular stereotype they might have? Yeah, I feel like, 'cause I do social media as a job, that, whatever. I'm in a relationship and there's always something negative people have to say, like how do you have sex? And how do you do this? And what can you offer your partner? So I feel like I'm always challenging people with videos like that, or commenting back to trolls and things. That's like the only thing I can really think of. But I don't tend to take those too seriously, because they're people that I don't know that are really irrelevant, so. I think that's really interesting how some... Lots of people think it's acceptable to ask disabled people how they have sex. Like, what is even up with that? I mean, you wouldn't go up to someone in the street that didn't have a disability and sort of ask that, would you? Has anyone else here had experiences with that? Yeah, definitely on the dating apps. Definitely with the dating apps. It's like, can you feel everything? And they're just like, oh, my gosh. Just like can you have sex? Yeah, I agree. And then you're like, yes. But they wouldn't ask a non disabled person that in the first sentence, but that's the main thing they want to know, I guess, important people. I also feel like if you're asking those questions, you've probably got a very vanilla sex life. Like, if you can't put two and two together and figure it out, then you just have it boring. So, yeah. Yeah. Definitely. Definitely. I've found that so funny. And moving on, I suppose, to LGBT+ people in the media and in television, do we think that's improved over recent years? Are we seeing more LGBT+ characters? Is it a good representation as well of both disabled and LGBT+? What do we think? Jordanne, do you have any views? Off the top of my head, I can only think of one show that's done a decent representation of being queer and disabled, and that was The New L World, The New L World Generation. I can't remember what it was called. But I think that was the first time I'd seen a disabled woman with a sexual storyline. Yeah. That's pretty interesting. Yeah, that was actually really good. How about you, Emily? Yeah, I was going to say I didn't know anybody, but like Jordanne just said, The L Word, The New Generation Q was it? She had quite good sex scenes as well, which it wasn't just like they cut it. It showed her how she would actually do it. I don't think she was a lesbian though, was she? Was she a lesbian? But it did have good sex scene in it. You know, for that character. Yeah, and how about you, Shelby? What are your thoughts? I can't think of anybody that is disabled and queer, so I'm going to have to check out what you guys are talking about because that sounds interesting. Yeah, I can't think of anyone either, which probably, I don't know, many of us haven't been able to identify, so maybe that says something about the media there, and maybe there should be more representation. I can think about a lot more disabled people in recent years. I know the program Sex Education was very good at sort of representing disability as well as lots of degrees of different sexualities and all of that, but not that intersectionality and people's experiences of that, which I think is really interesting. And just on the topic of sort of the media, do any of you have sort of a favorite film or maybe even a TV show related to maybe even Pride Month or LGBT+? Emily, what are your thoughts? At the minute, I was really into I Kissed a Girl. I don't know if you guys have seen it. It's kind of like Love Island for gay people, and I never saw the appeal to Love Island, but now I'm just like, yeah, it's actually really good. So it's like they're in Italy and these girls, and it is quite good. It is really good. I saw you nodding there, Jordanne. Have you seen that as well? Yeah, I Kissed a Girl is fantastic. It's the gay Love Island we never had. Very good. Is that your sort of film or TV show that you're... I'd possibly recommend the movie called Inside I'm Dancing. It was just a narrative of two guys. They're both disabled and they basically decide to move out together. It's really heart warming, sort of breaking the stereotypes, and it's a really good insight into physical disability. So it's not exactly Pride, but it's about being proud of being disabled and sort of breaking those stereotypes. That sounds really interesting. I've never heard of that one. And how about you Shelby? I haven't watched I Kissed a Girl. And I'm literally dying to watch it, but I don't have a TV licence, but that's a separate conversation. So I will watch it at some point, and I can't wait to talk about it with you all. But I do love Sex Education, because that was one of my favourite shows, because I feel like it really pushed the barrier with certain topics, and I couldn't help but appreciate that. Yeah, I've watched it far too many times to be honest. Yeah, no, that's great. I think for me, I've probably got a few that I would want to mention. You know, I loved Heartstopper. Did anyone watch that? Yeah, some nods. I've never seen that. That one. Oh, sorry, Emily, say that again. I'm saying that I've heard of it, but I haven't seen it. I heard it was really good, though. Yeah, yeah, definitely season one is the one to go for. But no, I thought that was brilliant. I also loved Love, Victor. That was from Disney+. And that was sort of a follow up from the Love, Simon. I think I like Love, Victor more than I like Love, Simon to be honest. And that was really interesting. Me too.'Cause I think his dad was completely fine with it, but his mum sort of wasn't. And then I thought that it was interesting seeing that relationship play out as it went through the series. And then I always really enjoy the film Call Me By Your Name. And I've read the book as well with, I think you meant to say his name is Timothée. And I really like that. Has anyone else seen that film? I haven't seen that film, no, but Timothée is the way. Yeah. And we can't move on from Heartstopper just yet, because it broke my heart, but also made me the happiest I've been. Really recommend it if you haven't seen it. Yeah, it was brilliant. And such a diverse sort of storyline, so touching on transgender, asexuality, bisexual, gay as well sort of thing. So I thought it was really powerful how they sort of portrayed it and how it sort of showed that sometimes things don't have to be as difficult as sometimes they are in the community. So I thought it was really good. Can I change my film answer? Of course you can. Because I've just remembered the 2014 film called Pride. And it is a really, really sweet film about how activists and minors come together to support each other and raise funds for their relevant causes. But there's just one line, and it's in Welsh, so you have to excuse my accent Emily. "She goes, where are my lesbians?" And I quote that as often as I can, when I enter a gay space. So I recommend Pride. So I guess you can actually accent. Yeah, I love that film too. That's a good shout out. Just on Pride then. So let's say we were going to be hosting a Pride dinner party. So the four of us and we could each bring one person from the LGBT+ community along. Who would we choose? And let's see who... You know, the collection of people we'd end up with at this party. So Shelby, who would you bring along? This is so hard to choose just one. The blue one. Yeah, I don't like it. I do love Reneé Rapp. I think she's incredible. I saw her in 'cause I think that was true of my obsession. I think I would invite her. But also, 'cause I think he's also incredible. So yeah, I'll take him too. Sorry. That's fine. No, that's good. And how about you, Emily? Who would you bring? I'd probably bring Lucy Spraggan.'Cause like, she could just play the music as well then. And she seems like a really good laugh. She's like, she doesn't drink alcohol either. So I wouldn't have that pressure to drink alcohol. So it'd be great. Yeah, yeah. She just brings good vibes, not the alcohol. I love that. Yeah, definitely. As long as she's got her guitar, can have the music and the banter. I think she'd be quite good to hang out with. No, definitely. And Jordanne, who are you bringing? Well, I'm a bit jealous of your guests, actually. I quite like Reneé Rapp and Lucy Spraggan. I might just join in with you guys if that's alright. Brilliant. Well, I think we've got a great dinner party so far. Do you know what? I don't know who I'd bring. I was thinking someone like Troye Sivan. 'Cause I just thought that would be, what a just laugh. What a great time that would be. Just a real good party vibes, wouldn't it? We could all start busting a move to get all started. I love that thought. Yeah, I love it as well. And just about coming out. So that's always a big deal for lots of people. And some people will be surprised. Some people potentially won't be. Some people care a lot. Some people won't care at all. But does anyone have sort of a coming out story that you wanted to share? And how have you found that? And Emily, I know you've got one. A really majesty one. So I'll start with you. Yeah, so we were on holiday to Florida and I was quite young. My brother was even younger. And he noticed that I was like staring at women a lot. And so we were on the plane then going home. And he was just like, "You're a lesbian. Tell mommy." And I was like, "Okay." And I was like, "Mom, I'm a lesbian." On the way home from Florida. And she was fine about it. Her sister is lesbian as well. She wasn't really shocked. She was like, "I thought so." But I made her tell my dad 'cause he was like brought up quite religious and he didn't get that either. He was just like, oh cool. At least she can't get pregnant. Oh yeah. Dads are so funny and valuable, aren't they? My dad was... When I first told him, he was like, "Oh, it's okay. I like women too." And now he comes to Pride with me. Wow. I love that. What supportive set of dads we've got there. I love it. My dad drove me all the way to Brighton Pride once, so that was quite nice of him 'cause I didn't think... 'Cause he's like an older generation of fathers as well. So yeah, he's been really good about it. And he's liked my partners over the years and stuff like that. That's really positive. Shelby, Jordanne, did you have any coming out stories that you wanted to share? And no worries if not. First of all, both of your dads are so sweet. I love that for you. I was the most nervous to tell my dad 'cause he used to make a lot of jokes at gay people. Not in a malicious way, just in a doesn't know enough, feels awkward when made jokes kind of way. So I was nervous to tell him 'cause I didn't know what he'd say. But after I went through it after 10 minutes, he was like, "Okay." I was like, "Is that it?" He was like, "Yeah." He's like,"I mean, you talk about the LGBTQ+ community all the time. So I didn't rule it out." I was like, oh my god, five years of like stressing for no reason. And he's like the most accepting out of everybody in my family. He's like the best. It's like, yeah, love him to bits. Oh, that's brilliant. That's brilliant. Yeah, sometimes you just need to like... Ripping off a plaster, isn't it? You just need to do it at once sort of thing. But it's still can be very difficult in that sense. So we've covered a lot of ground. We've covered our dinner party, Pride anthem, what disabled and LGBT+ people are portrayed in the media or not portrayed? Not many of that intersectionality being represented, and also some personal stories about sort of coming out and what that means. And the last question I wanted to cover today is, there might be lots of disabled people and members of the LGBT+ community struggling to find their place in both communities. And I wanted to get your advice to those people. What advice would you give them? Jordanne, over to you. I'd probably just remind them that they belong in those spaces. And that if something isn't accessible, then it can be made accessible. So don't give up. Send some emails, get your friends together and have a fantastic time. I love that. I love that. Really, really positive. Thank you. Shelby? Yeah, I would say that if you are struggling to find the community, like, try make, like, queer friends online. I don't know how, but I think I've got more, like, queer friends than straight friends. So I've got a really good circle around me, which I'm really grateful for. So there's always people online you can make friends with, that'll be like your support. Good. Yeah, really good advice. And how about you, Emily? I'd probably say, like, Shelby said, online is a really good platform now. So finding, like, gay people in your kind of area to hang out with. So they're normally, like, the easiest people to get on with. So, and then find, like... I am 35. So when I came out, it was easier to, like, find the groups, the local group. So, yeah, just try and get into the, like, smaller communities, 'cause they will look out for you. Yeah, really, really good. Good advice, everyone. And what would my advice be? It would probably be... It would probably be you are exactly who you should be. And you are exactly where you should be in life as well, sort of thing. And it may take a bit of time to sort of find out where you fit, and what people that you mold with, and what your support network and what your friends are. But that's completely fine. And just take your time and go with what's right for you. So that would be my advice. So thank you, everyone, for being on this Pride podcast for SMA. It's been great to hear everyone's experiences. And for all the listeners out there, I hope that you've enjoyed listening. You've been listening to the Living With SMA podcast. We hope you can join us again next time. But in the meantime, don't forget to like and subscribe so you don't miss an episode. You can find out more on our website at smauk.org.uk.