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S5E4 MS Advocacy and Accessible Fashion with Roxy Murray

Listen to S5E4: MS Advocacy and Accessible Fashion with Roxy Murray

Welcome to Living Well with MS, the Overcoming MS podcast where we explore all topics relating to living well with multiple sclerosis (MS). In this episode, Geoff meets MS and disability activist, Roxy Murray. 

Keep reading for the key episode takeaways and bio. You can also watch this episode on our YouTube channel here.

Make sure you sign up to our newsletter to hear our latest tips and news about living a full and happy life with MS. And if you’re new to Overcoming MS, visit our introductory page to find out more about how we support people with MS.

Roxy Murray’s bio:

If you’re keen on driving inclusivity, Roxy’s story will be of interest to you.

Roxy Murray (@multiplesclerosisfashionista) is a London (UK) based MS and disability, sex and body positivity and Queer activist. She is also a podcaster, voiceover artist, fashion stylist and the designer of sick and sickening (@sickandsickening) clothing, a brand created to celebrate disabled and invisible illness warriors.

She focuses her attention on creating better representation, consideration and inclusion within the MS narrative for people of colour and the LGBTQIA Community.

Roxy’s Social Media

Through her social media, Roxy combines her love of fashion and art to empower others on their journey, whilst they navigate through life with a disability or invisible illness. She creates videos and Instagram content that celebrates and brings visibility to the beauty of the community with her hashtag #WeAreNotInvisible.

She also focuses her attention on helping others take steps to release grief and openly talk about her own mental health battles.

Roxy’s podcast

She highlights real unfiltered stories and talks about taboo subjects like disabled joy, sexual empowerment and much more on her podcast (@sickandsickening_podcast).

Selected Key Takeaways

Accessible fashion is adaptable, so that it suits every body, every shape, and every person’s needs

Sometimes that might be an adaptable sleeve, it might be magnetic fastening. Jewellery is a big one for me, I find it really hard to clip in the little clips around the neck. You can get ones [fastenings] that are just magnetic so it’s easier to pull on and push off for someone that wants to be chic and fashionable and look good, but they want to be able to dress themselves.

Then Barbara Met Allen is a new TV show chronicling the UK’s disability rights movement

It’s more inclusive it’s more accessible and people that are disabled are being allowed to tell [their] own stories, which is really special. So, you have a story of when Barbara met Allen and together, after the disability rights generation movement in America, it came over here. They were looking for their own accessibility revolution.

There’s no need to desexualize disabled bodies

I’m a 34-year-old, unapologetic Aries. I’m going to stand up, be proud and look fabulous. I’ve literally walked a runway show with a mobility aid, and was like, “I’m going to wear underwear and be fabulous and show people we can be disabled and be sexual and be good and curious and gorgeous”.

Transcript

Read the episode transcript

Geoff Allix 

Welcome to the latest edition of the Living Well with MS podcast and joining me on this edition is Roxy Murray or Roxy is also known as the Multiple Sclerosis Fashionista. She’s a podcaster, MS advocate, a fashionista who advocates for the visibility of people of color to be included in the MS narrative. So, could you start off with Roxy, tell us a bit about yourself and your MS journey.

Roxy Murray 

Okay, yeah, sure. Thanks for having me today. And obviously, as you said, my name is Roxy Murray and I go as a Multiple Sclerosis Fashionista also. I’m a disability rights and MS activists that obviously goes on the narrative of gaining visibility for people of color and queer people in the MS narrative, which includes medical studies and the question of drugs. And I use fashion as a tool for activism. And my hashtag is #WeAreNotInvisible, because honestly, MS is an invisible illness. But I feel like we should make ourselves visible and invisibility, we can create change, and also connect to each other. My diagnosis of MS started when I was 18. When I was 18, I presented with double vision and blindness in my right eye. And I was rushed to the hospital. After a series of tests and stuff, they didn’t believe at that moment ahead. MS. They thought I had lupus. And that was based on my skin tone. Anyways fast forward eight years I’d been living on and off without help them stuff. And I was dealing with no drugs. And I thought I had lupus. And I had to deal with a lifestyle of no one kind of taking care of me. And eight years later, I had a massive relapse where I couldn’t really walk and I my face had dropped and stuff. And I had to go to a hospital. And I had to get to the hospital in Kent actually funny enough. And I was at a friend’s house and I’d had a relapse. When that happened. They’d rushed me to the hospital and they’d done a series of tests. She was like to me, I don’t think you have lupus. I think he has something called MS. Obviously at that time. I didn’t know what MS was, who knows what MS is until you get MS. Right? And ultimately, they were like if you trust me, because basically when I got lupus, he said benign intracranial hypertension, if anyone doesn’t know benign intracranial hypertension is, it’s the spinal fluid in your spine, raising too quickly into your brain and creating pressure, which meant that I got what they call. And I know you probably know this therapeutic lumbar punctures. And if you’ve had a lumbar puncture, there is literally nothing therapeutic about it is the worst thing I’ve ever had to get done. I hated it. But for me, I was getting them every six weeks. By then I was like, I can not deal with another lumbar puncture into like, literally even the thought made me want to cry. But she was like, if you believe in me, and I will do this and I will sedate you, which are the first time anyone’s ever told me you can be sedated for a lumbar puncture and I promise you, I will test your spinal fluid. Now, I didn’t know that was even a thing. And for all those lumbar punctures that I had, no one had ever done it. So basically, a week later, she was like, I can absolutely confirm that you have multiple sclerosis. And that was where my life change. So that was a difference between being 18 and 24. And that was like over time I’ve just been living in the universe just with lupus and yeah, so I didn’t get any drugs or anything for those years. And it affected my mobility. As you can see that I have mobility and a range mobility aids and it affected like my mental health a bit because obviously you can imagine you’re living through life with all these changes inside you as I was 18 and thought I was going to be flying around the world doing University being amazing, all my friends travelled the universe and instead I was in hospital beds, and that’s what started off my activism because I realized that ultimately, there was no real knowledge behind MS and people of color. I didn’t know why that was but obviously I realized that had affected my own journey.

Geoff Allix 

And so the fashion side of it, what is accessible fashion? So what’s a brand and what’s what does that mean to you?

Roxy Murray 

So accessible fashion for me, how I would describe it is fashion that’s easily accessible for everyone that is adaptable to most bodies. So that means if you’re in a wheelchair, it’s fashion that’s acceptable and works well for you while sitting in the wheelchair. So that might mean adjustable pants seems so if you know you sit down in a chair, your pants slightly go up. And ultimately if you’re always sitting in a chair maybe you need trousers that have a longer seam line so that you look as chic as you want to feel in a wheelchair. That can also be the ease of dress. So this dress for me is easy because I can just slip to slip over my head. Sometimes that might be an adaptable sleeve, it might be magnetic fastening. And jewelry is a big one where like, for me, I find it really hard to clip in the little clips and jewelry and around the neck and stuff. And you can get ones that are just magnetic so it’s easier to pull on and push off for someone that wants to be chic and fashionable and look good, but they want to be able to dress themselves. Obviously we can order carers, we have helpers, we have family members that will help us. But sometimes you want a little bit of independence and adaptable fashion allows you to have that. One of my favorite adaptable fashion brands at the moment is created by a lady called Victoria Jenkins. And her brand is called Unhidden fashion. And she creates adaptable fashion for people of all ages. She’s currently got a collaboration with Paw Patrol. So if you have a kid, you’ll know. I love Paw Patrol, it’s so cute. But she’s got like his whole adaptable fashion range she’s doing with them. And then she’s also collaborating with Lucy and Yak who do the really cool dungarees that everyone wears. And she’s making them adaptable, so that it suits everybody, every shape, every person needs. And I think adaptable fashion, from my perspective is a massive industry, although it’s a new industry, I think it’s something that’s really needed. And it can benefit everyone, you might not be disabled. But as we get older, the ease of you know, chic ease of fashion is optimal for everyone.

Geoff Allix 

Yeah, and I think that I mean, what you’re saying getting older, the traditional thing is that once you hit mid 40s or 50s, and you don’t do fashion anymore, you need to be putting on your slacks and slipers. Then people are gonna get accessibility. I mean, like, you know, I’ve got older family members, they don’t have a condition as such, other than the fact that they’re old. And they have the same requirements as me.

Roxy Murray 

And who doesn’t want to be fashionable while you age. It’s like I know I do. I mean, I know you know me, but I definitely want to grow older and still look fabulous. I don’t want to have to compromise my personality and my style. Just because maybe my dexterity and my body’s movement is changing, whether that’s my mobility, whether that’s just my personal movement in what I can do. And I still want like I said, a bit of privacy and ability to love and dress myself.

Geoff Allix 

Yeah, you look at the how the queen looks right up until, you know, she was once she was she 94 I think when she diesd and like but she was like, you know, she was wearing a Philip Tracy hats and like she was properly you know, looking good until the end.  And I think it might downplay the funeral a little bit, though, maybe just a little bit. So I’ve seen that you’ve got a cool mobility bike, and also some really good looking walking sticks and canes. So firstly, what’s your your walking bike to start off with.

Roxy Murray 

My walking bike is a beautiful yellow number. It’s called the Alinker walking bike, it was created by an amazing lady in Canada. And basically what it is, it’s an alternative to a wheelchair. So a lot of us can walk, but not for a long time. And we need to sit down quite often. So this walking bike is a bike, essentially without pedals, so you can constantly sit down, but you can keep movement in your body and walk. And by taking small steps and it allows you to go longer and faster. And I love it for like a good museum trip. Like museums are huge or Disneyland is so optimal for that where you don’t really want to be in a mobility scooter, or what they call in America a Rascal. But and you also want to keep mobility. So obviously we all know that exercise is helpful for MS. Even slight exercise. So it allows you to just keep walking while you can or while you remain mobility. I love it. It allows you to be upright so I’m not sitting in a wheelchair and eye height with everyone that I meet. And it’s real quick conversation start because it’s beautiful. No one really knows what it is. And whether someone has disability or not, when they meet them. They often go “well can I get one because I love this and I think it’s really cool.” So it’s a really nice conversation starter and then you kind of tell people that bit more about it. And yeah, I think it’s really cool bright yellow, yellows are very positive, beautiful color to have as well. So

Geoff Allix 

it’s a trikes as well, isn’t it? So it’s stables because it’s not two wheels, it’s three. So you’ve got that, it’s not gonna fall over on its own.

Roxy Murray 

No, it’s absolutely great. And you can add a basket at the front if you’re like me, and you’d like to shop. And they have them in a few museums around London as well. But you can go into any shop, it doesn’t take up any more space than a normal wheelchair either. So there’s no reason to be denied entry to anywhere, it’s very easily movable. And you can pack it away, you can pop the wheels off very easily. And you can literally fold it in half. It’s very secure, and it’s easily traveled with. So it’s a really nice piece of kit.

Geoff Allix 

So I have a lot of different kit as well and it’s one of those things I’m really tempted by. I definitely wasn’t sure because the UK dealers. So I’m like, if I’m ever nearby, I’m definitely going to give one a try. Because I have a mobility scooter. But if I use that too much, I’m not doing any activity. And so it’s that’s one way path to using it all the time in my mind. So I want to keep active because I can walk by just can’t walk that far. So therefore, I ended up using a mobility scooter because if I’ve got to walk two miles, then I’ll take the scooter out. But actually, there’s another alternative. And when I have a trike as well that I go out on so. So I have like an E trike that I can take on the beach and stuff. And that’s fantastic. But, again, that’s huge. And I couldn’t take it to shops. So there’s like, but yeah, it’s I mean, there are a lot of devices. But yeah, there are different things for different uses. So that’s one of the ones that’s on my list of things.

Roxy Murray 

I definitely think like I said, we need different things for different uses. And ultimately, we need to have a range of mobility aids to get around because not one size fits all. And ultimately, like you said, I really want to see what that trike’s like. So do send me a picture after because that sounds amazing to get around a beach.

Geoff Allix 

Yeah, it has huge back wheels. I won’t reveal it, it’s behind this cabinet. Yes it’s got huge, great big fat wheel. So yeah, Alinker is a l i n k, or we’re not a sponsored or anything. But yeah, check them out. They’re good. I mean, I’ve seen them. So you effectively like if you’ve got, I think you can put one foot up currently. So if you just got one leg that you can use well, that works with that. And you can Yeah, so it’s it keeps you active and keeps you stable. And and you can sit on it.

Roxy Murray 

Yeah, like you said, I am a right leg pusher up all the way. I never use both my legs. And it’s so good for that to relax. Because I don’t know most people with MS that I speak to always say to me that their left leg is weaker.

Geoff Allix 

Why is that? I need somebody to look into that. Yeah, it’s all my left side. Yeah, no, like my left hand, my left arm, my left leg of the problem. My right side is absolutely fine.

Roxy Murray 

Yes. So if I do yoga, I can literally see the difference. Like I cannot hold my body weight up on one side. But my right side. I’m so strong. It’s ridiculous.

Geoff Allix 

Yeah. That is weird. A lot of people I spoke to his left side. Yeah, we need to get Gavin Govannoni to look into this. So as well as that you’ve been an extra in a show about the history of disability rights in the UK. So well firstly, tell us bit about the show. And secondly, a bit about the history of disability in the UK, or disability rights in the UK.

Roxy Murray 

So the show is called Then Barbara Met Allen. And it was done by Jack Thorne. And he was actually changing overall the industry, the TV industry in the film industry, and how it works with disabled people, and how it has disabled actors and stuff and just to make TV in general more accessible. So even from the show is created like a journey of accessibility, and a very much more beautiful industry where everyone feel more connected. It’s more inclusive it’s more accessible and people that are disabled are being allowed to tell own stories, which is really special. So you have a story of when Barbara met Allen and together after the disability rights generation movement in America, it came over here. They were looking for their own accessibility revolution. They couldn’t get on the bus. They couldn’t do the simple things that everyone else could do. So they fought in true punk British style. “We’re going to change it” and they started creating T shirts that said “piss on pity.” They started chaining themselves to buses. They started going out on the streets and asking for the change that they deserve. It will was a big revelation, it took a lot of people, there’s too many people to name, even my MS brain can’t even remember everyone’s name. But these people are the reason why today we have rights. And we still have a lot of work to do. We really do. But it was a very special moment to be a part of that. For me personally to learn that these stories, the stories of like literally about 10 people that came together to create this revolution, to meet the real Barbara, which was just insanely iconic, where you see someone you can have a conversation and be like, because of you, I can get on the bus with ease. Because of you. People care about basically my rights. And because if you I have a voice, because disabled people didn’t have voices, no one cared. People were horrible sometimes. And we’re like more Why do you need to be? Why do you need to get around you’re disabled, why can’t you just stay at home? Or? No? What do you want? Do you not just want to like, you know, it was all those kind of you know, telethons, where it was like, you know, oh really sorry for disabled people look at them all day, you know, I can very inspiration porn that people will call them, you know, make sure you ring up and give a few pounds to make sure they have a better life. But we didn’t want that, they didn’t want that they wanted real change. They wanted real rights. And it’s just about the story of how that change has now been actually put on Netflix. So if no matter where you are in the world, you can watch the story. It’s a better story that I can ever explain on the podcast. And it’s really special to have been a part of putting that out into the universe and just to be a on the most accessible shoot I’ve ever seen in my life. With literally about 50 to 60 disabled actors at any one time in any day. Amazing staff, we were fully catered for. We were fully heard any excess needs we had were catered for too, and we got to tell our own stories, and we loved to feel a part of something that was truly amazing.

Geoff Allix 

Wow, I think one thing that I’ve had a little bit of one night involvement with, but there’s a show called Sex Education in the UK that you’ll be aware of, I think it’s on Netflix. So it will be international as well, I’m pretty sure. But they had a character in the latest series who’s got MS. Very briefly he’s like the parent and one of the main characters. And and they went out for auditions. I did a sort of show report. And I saw I’ve got a little way down the process. But then they didn’t come back to me. But they wanted people with MS to play the guy with MS. They didn’t need to have MS because he only had a few lines. So really, it could be done by anyone but their their policy is no, if it’s someone with MS, then we want an actor with MS. And if so all the people in it are typically representative of whatever that may be whether that person is gay, that would normally be an act gay actor. If that person’s got the character has got MS, then the actor has MS. So so that you just think whereas not that long ago, they wouldn’t have done that. And you do get these great iconic performances by some actors. And you go, that’s amazing. They, you know, they’ve portrayed someone with motor neuron disease really accurately, but then it sort of moved on from there. And now that you say, Well, why don’t we use someone with motor neuron disease to do it? Or you know, and that was their policy? And that was quite interesting. And yeah, because they just said, oh, yeah, the reason we’re using we’re asking you guys is we want someone with MS to protray you the person with MS.

Roxy Murray 

I love that because the hashtag for the show that I was in is #NothingAboutUsWithoutUs. So it’s like the belief that like you just said, like, who can tell about MS stories and someone with MS? There’s no way. Like doctors, you study it, but you haven’t got MS. Friends and family: They love us and they care for us. But they don’t have MS. It takes our voice to really get across the nuance of what this disease or any disease or illness is.

Geoff Allix 

You’re not gonna get it wrong are you? So another thing that has come up the Adams study, what’s the ADAMS study in the UK?

Roxy Murray 

The ADAMS study is a study by an amazing guy called Ben Jacobs. And it’s the first study in the UK that actually assesses the genetic DNA of people of color in relation to MS. So I’m not sure if everyone knows, but there’s not many MS drugs that have been created with all genetic profiles in mind. And he’s starting to gather the data and assess the data so we can understand how MS manifests in someone of color. So for me, like if I go back to my story, most people present lesions in their brain, or that’s what we’re told. For me it was on my spinal cord. It took a while for people to understand that, but it’s like, well, why does it start in your spinal cord vs. in your brain, and how does that manifest in your body and so forth? So he’s doing a series of tests, which are just literally saliva samples. So if you are of an ethnic, diverse background, really do sign up. It’s an amazing study, it literally just takes a spit in a jar. And it can change the trajectory of MS. Because ultimately, we have like, things that tell us Epstein–Barr virus are ways to get MS. And sometimes it can be depression, and there’s many triggers that can cause MS. But we don’t know how that manifests and people of color, or if we get that data, how it could actually help us get closer to the cure. So it’s a really amazing study it’s very new. We’ve got about 400 people, I think signed up now. But we’re starting to analyze the samples. And as we go forth, we will get closer to the cure. But we’ll also get closer to creating more drugs that are more optimal for everyone’s bodies, and everyone’s genetic DNA in mind. So yeah, I’m so proud to be a part of that.

Geoff Allix 

if you come across Mitzi Joi Williams?

Roxy Murray 

Yes. So I met her and this year in July. Yeah. And she is just incredible, honestly, the coolest person I’ve met, like, I was literally like, I met Madonna. Like, amazing, because they’ve been pushing those boundaries. And they’re part of that American Revolution, because obviously America has the data. But it’s hard to share it across channels. Do you know I mean?

Geoff Allix 

Yeah, I mean, they haven’t done because she’s been a podcast guest already. But everyone in the American military, have basically given the right to their full medical records while they’re in the military. So they know all those people and the ones that it’s like millions of people. And so they’ve basically, they’ve got all that data. So they got vast amounts of data. And so they got all sorts of things they can do, like people who’ve got MS. Who, and they can just say, Okay, let’s have a look at how it’s affected your family’s income, or what racial background you are, or how far north you were born or use. So you got big place the vast amounts of data late Yeah, Americans have loads and loads of data, they just have to be able to trawl through it, I think just it’s a lot of it’s come through that military side. If you’re in the UK, I don’t think you sort of have given the government all these rights. But in America, that’s just it, you sign up, you basically say they can do whatever you want with all the medical data. So they can then trawl through it. So other things, so your work includes elevating the patient experience. So on the other side of it, though, sort of personally, how could we be our own best advocate, when we interact with doctors and medical team? Because there’s definitely there’s a sort of, it would be extraordinarily rare for your neurologist or your MS nurse to have MS. So there’s definitely a slight disconnect, but but how do you find that? How can you be your best advocate when dealing with your MS team?

Roxy Murray 

So I learned this from another MSer. So I, you know, had my own journey. And it was a tough journey. And I realized that I didn’t really always understand what they were saying, or what the medical jargon was. And I always felt like when I went to a doctor’s surgery or a hospital appointment, I so overwhelmed with just having MS and having that internal feeling. Sometimes MS can be like a full body emotion, as long as the feeling. Have you ever watched a movie where you can hear voices and things are happening, but you’re not really fully present? I was doing that as every few months I’d go in, they were like, are you alive? Are you taking this drug? Yes. And then they push you back out the door. And I’d be like, Oh my God, and it was really affecting my mental health. And I was like, What do I do? So I started off with learning what MS really was and the options. So like we spoke earlier about like diets and mindfulness. And I kind of lean towards everything that a lot of people like don’t look at that. That’s not you know, oh, I didn’t believe that’s like what caused MS or thought but I wanted to know, I wanted to make my own personal judgment. Because MS is not the same for everyone. That’s the first step. And two, I started to leap into my body. So when you get that diagnosis, it’s not the happiest time of your life. You’re like, Oh my God, you’ve got MS. You’re probably like, oh, okay, MS. Then they tell you it’s incurable. So you’re like, well, it’s incurable. What can I do? And you can feel depressed and you can feel a bit like oh, I don’t know. And because they don’t give you a toolbox, they don’t go here. So you have MS and here’s all the information possible. Make the decision. You mainly get like a list of drugs like a menu of different drugs you can take what side effects and you decide on that. I didn’t want to live like that. Like, I realized I needed to make a change for my mental health, my physical health. So after speaking to Dominic, who’s on The MS Guide. And he was like, write down everything, ask questions, and I had to become fearless. And I know when you start an MS diagnosis, you are kind of fearful. And you don’t really know what’s going on. So I had to be like, leans her body side, like, Oh, my left leg was roaming. But my cognitive function, I don’t know about yours, is not great. So I realized, like, I would have all these amazing conversations with say, you or a friend or family member, and I could list everything off. But as soon as I got into an appointment, I forgot everything. So I started keeping a diary.

Geoff Allix 

Yeah, I think going into a neurologis appointment with a list is a best advice.

Roxy Murray 

Because it’s how you start advocacy write a list of things to never forget.

Geoff Allix 

Yeah, don’t I mean, I do will go in there thinking I need to talk about I mean, I’ve got an appointment coming up in a month’s time. And I’m starting to sort of note down things. Because otherwise, you’re right, I’ll forget. It probably is an MS thing or because I’m 51 or something, but you start to forget things. And so I’m just a constant list maker. Now I have notepads always by me, it was work and stuff. I never looked back through them very rarely, in fact, the act of noting it down actually, for me, it’s much safer. That’s the thing. I write a list, I mostly remember the stuff on the list, without even looking back at it. But if I don’t make that list, then.

Roxy Murray 

And sometimes we forget the list. So I will say to people, lists on paper, lists on your phone notes. Yeah.

Geoff Allix 

I have my phone, which syncs to my computer, which like, yeah, and I write on bits of paper as well.

Roxy Murray 

Because you will forget sometimes I tell someone else sometimes depending on what emotional situation you’re in, you might be super emotional, maybe you need someone to come with you. Sometimes it’s good to have someone to come with you as well. And ask questions that maybe you’re not in the right space to ask, but also ask questions that are not asked from you. So for me, I’m a massive advocate for MS and sex. I believe we’re disabled or we have an illness. That’s great. And keeping us alive is optimal. We appreciate that. However, like, I also want to live. So like you know, you want to skydive, you want to like set up you and do what you want. But maybe you want pleasure. So I’m the kind of person that I will go now, which I wasn’t at start when I’d be like so how do I make this better? Like how do I change my bladder so that if I’m, you know, getting into it with someone that’s not an issue. And I ask the neurologists question, and sometimes they make me red in the face, and sometimes I make them red in the face, but I’ve realized that I have to ask them to advocate for myself and advocate for the best life I can have. And that includes all remits of what my pleasure is, what my life is and what my lifestyle is.

Geoff Allix 

Right? So how do you go about de stigmatizing disabled sex or adaptive sex or how are you want to put it?

Roxy Murray 

By being the poster person for it, I can’t expect you to do something that I’m not going to do myself. So I will be loud and I will be proud and I will create space for people to come behind me and feel less of that nervousness, less of the embarrassment. I’ve been part of a lot of studies that I’ve been part with King’s Hospital, which is the creation of a self therapy kind of thing, to help people work through sexual difficulties. Specifically for MS. I speak to a lot of pelvic health doctors in relation to MS specific health and physiotherapy. So because I know that we need targeted structures, but they’re not necessarily in the NHS (National Healthy Service) overall. So I’m working to help build those things where behind the scenes and everyone sees, but in front of the scenes, I’m like a 34 year old, unapologetic Aries, I’m gonna stand up, be proud and we look fabulous. I’ve literally walked runway set show with a mobility aid, and was like, I’m gonna wear underwear and be fabulous and show people we can be disabled and be sexual and be good and curious and gorgeous. And it’s okay, we shouldn’t feel like, what everyone does to us is they desexualize us. They make it so that we shouldn’t feel like we deserve space. And that’s why when you said about Sex Education, as a program, it’s so important because that program is pushing boundaries that even my voice would never get to. And it’s showing disabled people that you know, we’re okay, we’re worthy of space and visuals and time. And I love programs like that, because it does what I can’t do, but in the time I still make sure that you know if, like, I can’t say go outside and do these things. I’m not going to show you I’m doing them first self visible in my invisible illness.

Geoff Allix 

That show the most visibly disabled person is not a very nice character. And then that came out. So they said, Oh, it’s a thing, because he’s not actually that nice. And they said, you shouldn’t have to like someone because they’re in a wheelchair though, actually. It shouldn’t have to be, he shouldn’t have to be the nice character in a wheelchair. The fact that guy’s not a nice character, and there were bits of it were some episodes, we’re gonna go through the, the gist of it is a lot, most of the episodes he’s not actually that nice. And so he shouldn’t have to be, just because he’s in a wheelchair, he doesn’t have to be. And that was sort of like, Oh, it’s a shame he wasn’t nice. No, there are nice people, they’re not nice people. That’s, unrelated to the fact that the guy uses a wheelchair, for you know, he should be able to be whatever. It’s just yeah, he could be a neo Nazi in a wheelchair, or he could be a saint in a wheelchair. Those things are unrelated to the wheelchair. But it’s so actually kind of works.

Roxy Murray 

That’s the thing about disability, I think people forget that disability can affect anyone at any time. That’s why I love the top “piss on pity” because most people want to feel pity or emotion that are, “poor you, you’re in a wheelchair.” And then when someone’s like mean or like, well leave me alone. People kind of Oh, actually, that’s not what I want to feel as an able bodied person. But it’s not about what you want to feel. It’s about their real authentic self, warts and all, it doesn’t matter. Like let them be who they are. And I love when people portray that in a way to show that, you know, not everyone’s nice because they’re disabled.

Geoff Allix 

So when it’s is this sort of adaptive stuff for sex, as well as that’s something that’s coming around?

Roxy Murray 

So many. And they really exist, which is why people like oh, you speak about adaptable sex toys. And they might have existed for a long time, there’s some new ones coming to market, which are hands free. But for a long time, you’ve had like, wedges. So like, if you’ve got back pain or you can’t get into right position, you have wedges you can put on your bed to do that. Bondage, even though people like “Oh, bondage,” there’s so many adaptable things in a bondage kit that you can use to help you elevate your sets as a stable person. But it takes not being shy and a bit of a build up. There’s a lot of toys that I talk to people in teach people to us that helped bring sensation back because we can lose sensation with MS or we can have too much sensation, which is a whole other problem where it’s too intense to just like go in the corner and say “stop touching me”. That’s an issue. And but they’re all there. But it’s a no one highlights them as adaptable tech. So that’s the issue. So I work with other people in America, I do a lot of interviews on magazines and stuff. And I talk about things and tips and tricks that people can use because it’s already there. And a good brand is called Hot Octopus. And they create really good like bullets and hands free kit and a lot of things for men as well. So if you all think sex toys are for women, and that’s great and yeah, we do have loads but there’s a lot for men too that are needed and they can create a lot of pleasure for them and that’s probably what my next highlight should be is more what guys can use to help pleasure themselves or help to feel more intimate.

Geoff Allix 

Aaron Boster talks about that on some of his videos he sort of goes into our need to increase the stimulation and using wands and things like that and but he talks about men and women.

Roxy Murray 

It’s about the nerve endings.

Geoff Allix 

Yeah, if you hear a noise in the background by the way that’s my robot lawnmower, which for anyone who has a lawn that’s the adaptive aid that’s absolutely brilliant. Yeah, we’ve got a perfectly cut lawn, which I don’t have to do anything with. It does its thing. It trundles around every evening and cuts my lawn.

Roxy Murray 

That’s amazing. That’s actually incredible.

Geoff Allix 

Because I can’t mowed the lawn. It’s just great. Yeah, great thing. Anyway, so that was a bit off topic. We just see that there’s noise in the background is but it’s my robot lawnmower trundling around.

Roxy Murray 

You’ll be surprised how many people will put comments now being like, can you send me the link to the robot lawnmower?

Geoff Allix 

It’s great, they’re not expensive. So we talked about sort of sex and things. I’ve come across a couple of people who are in relationships with two people with MS with each other, but that’s very, very rare. So let’s say most people their partner is going to be someone who doesn’t have MS. So how would you go about talking about embarrassing MS symptoms which might be like bladder control, might be sexual How would you start those conversations with a partner?

Roxy Murray 

I get asked question a lot. And to me it’s different because I have been in relationship for like 14 years so my partner transition from my lupus diagnosis to my MS diagnosis with me. So they saw like everything like I’d had the worst times I’d gone on public transport then wet myself. They’ve seen me in so many situations, it’s hard to even be embarrassed anymore. Because like, what am I being embarrassed about? You’ve literally seen everything. So for me, it’s been okay. But a lot of people ask me like, I’m dating. I’m on Tinder, I’m on Grindr. I’m trying to connect with someone new. When do I speak about this? What do I do? And I’m a believer, like some people I don’t think I’m my MS diagnosis first, which I agree you’re not just MS. You are definitely human outside MS. But I’m a believer that at least by that the second or third date I’d want to let you know, because I don’t want to be with someone that doesn’t want to be with me. And that’s the thing. It’s never going to be the easiest conversation to have like, “hi, I have MS.” Because some people will be like “what’s MS?” And other people might be like “Well, I don’t know.” But I think they’re missing out. Because I think MS people are amazing. And that’s sounds probably sounds bias. But I genuinely love this community. I think there are some amazing people, and they really bought out my own independence as well. But also, like I said, to a lot of people face to did you know who Myelin & Melanin are?

Geoff Allix 

I was going to ask you about that actually, we’ll talk right now. I was gonna say that’s your podcasts or you’re involved with that podcast?

Roxy Murray 

It was their podcast, and they have these parts and those parts. And the four of us, I think it was those parts we did together, which was just a series of four black women talking about sex. And some people like some of the things that we find embarrassing, like wetting yourself for someone else is a kink. Paying 1000s of pounds for that exact thing. So it’s about getting the balance and understanding yourself what you’re okay with who you are, and what you’re okay with, and then translating that to another human. If someone doesn’t want you because you have MS that’s not on you that’s on them. And ultimately, you can only be who you are, there’s always going to be someone for you. I don’t know what it is like to be in a relationship with two people with MS. That’s a special situation. And I love listening to those podcasts because a lot of them do do podcasts. But I just think you can only be yourself and only be honest, I think we’re such amazing people outside of MS. We are fully talented. By the way, if I speak to people with MS and ask what do you do, and they tell me what they do, I’m always like, that’s amazing, then, the problem is how people perceive disability is never going to be with you. It’s how the media has portrayed disability, how we’re not visually seen enough. And obviously, like I said before, the desexualization of people that are disabled. I don’t know why that is. That’s just something that makes other people feel comfortable. So I’m glad that we’re changing that narrative, because then it shows people that actually we can still mean independence from adaptable tech and stuff. We are still absolutely gorgeous. No matter what anyone wants to think we can still be highly sexual beings, where MS is not a death sentence doesn’t mean we have MS so we’re gonna die. Yes, there’s gonna be hard times and good times. But that’s life in general, regardless if you’re able bodied or disabled doesn’t matter. So I just think being honest and upfront at the start is always a good idea. Just for yourself. I wouldn’t get attached to someone, and then six months or like, “Oh, God, you’ve got MS. I don’t want to do that.” Because of on my emotions?

Geoff Allix 

Yeah, you’re essentially you’re wasting your time aren’t you?

Roxy Murray 

Yeah, and I don’t want to do that.

Geoff Allix 

So and all these things are in the shownotes. Right. So like Myelin & Melanin, then we’ll link to everything like that in the show notes to check them out. But another thing, which also links to is the Stop MS campaign for the MS Society in the UK. So just a final thing. Could you tell us a bit about your experience, the campaign goals of the stop MS. campaign.

Roxy Murray 

So MS Must Stop is a campaign that we all did together. And I’m really proud of this campaign because a I think it’s the most diverse campaign that we’ve done. I also think it’s the first campaign where it wasn’t about pity or feeling sad for someone with MS. It was about action. It was like it needs stop. And it was about us explaining like, what it means to us, what MS is why it must stop and also how close we are to stopping it. And that we just need this little bits of push so we can really get to a place where we can stop MS. We are farther in our medical studies and understanding of MS than we’ve ever been. People are living way better lives than ever. And this is what it’s about. It’s about gaining I think it’s 20 million pounds to help fund the last few steps of stopping MS. And it’s just a series of people who had like the iconic was Dave Walsh who was the world’s strongest man who’s actually the funniest person. You had Yazzie who’s just amazing. You had Natalie, you had Amy from MS Together. They had Nick who just literally ran a marathon and they had me and we’re all different. But the common factor for us is that we will have MS. We had a chance to have amazing conversations, but also to express what MS means to us and show you that MS is not something that you will see you can’t go, that person has MS, because you wouldn’t see on any of us. And we were just sitting there having a conversation. But we need to stop it for many reasons. And I didn’t know I felt like it was the best MS Society, MS best campaign I’ve ever seen personally, for many reasons, but like I said, the main one was that it was more of a celebratory campaign, let’s celebrate them as community. But let’s also help them stop MS so that we can live a better life. And so anyone else feeling the emotions and issues that we’ve had behind that. I don’t know it’s still going on now. So you can donate to it if you want to. You can also still take a part of it. It’s literally like writing some words in your fingers. I can send you the video if people want to see it. And you can do the gesture and get donations from people to help us stop and ask because it’s really important. We want to understand when I sent genetics because like you said your dad had MS. I’ve got people have brothers and sisters that have a mess. I’ve got twins that I speak to I have MS. And we want to understand how does that work genetically? What does that mean? If I have kids, that kind of thing. And we can stop MS. And we don’t ever have to worry about that. Because we really know how to cure it so it doesn’t matter.

Geoff Allix 

Okay, and with that, and as I said, yeah, all the links to all these things will be in the show notes. And one of the things I would say definitely check out Roxy’s twitter feed because she is very, very good. Your interest there in accessibility and fashion as well. So with all the pictures, where you’re looking good. But yeah, check out Multiple Sclerosis Fashionista but we’ll put links for all that stuff. So thank you very much for joining us, Roxy.

Roxy Murray 

Thank you for having me.

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