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SoWhoCaresAnyway E19 Flying in ever decreasing circles · SoWhoCaresAnyway

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Hello and welcome to So Who Cares Anyway, the podcast that shares learning, innovation and ideas from the world of health and social care and beyond.
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My name is Ruth Germain and I'm inviting you to join me each week with my inspirational guests to hear about who cares.
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What they do, their passions, their knowledge and ideas, and importantly, the difference they are making to improve the health and wellbeing of people in our communities.
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I consider each of my guests to be incredible individuals working with people in new ways or with key messages to share.
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People from healthcare, social care, the voluntary sector, community groups, and more.
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To join me each week to find out, so who cares.
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Anyway, to find out more about me, who I am and what I do, please head over to my website, www.reflectiveruthconsultancy.com,
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where you can also catch up with previous episodes and read my blogs.
Hello and welcome to another episode of So Who Cares.
Anyway, and today I am delighted to welcome Dear Sharma.
Now, I first met dear when we were at an event at Canterbury Christchurch University around research and dear was there and I was out in the.
Reception at the end and we just started chatting and I mentioned to dear that I had a podcast and dear said, I'll be on your podcast.
And at the time I had no idea, what it is that dear does or what your work is.
But I thought, well, we're at a health and social care conference around research.
You are really friendly.
Dear, dear, smiling away at me and I said, yeah, absolutely.
Come and join me.
So.
We've had a little chat and talked about what it is that Dear brings today, dear is a postgraduate researcher and associate lecturer at Canterbury, Christchurch, and also has some roles at Muscular Dystrophy uk.
But if I can pass over to you dear to give us a little bit more background, please.
Hi.
Thank you Ray.
Hello everyone listening.
My name's Dia.
I am 23 years old and I.
A individual living with a muscular dystrophy, I attend Canterbury, Christchurch University as a postgraduate researcher.
Just like Ruth said, I'm doing my masters by research in tourism studies, and I graduated last year with a first class degree in tourism Management at Cancer Christ Church as well.
In terms of being more involved in the healthcare field, I am a associate lecturer for the faculty of medicine, health and social care.
More specifically the health and social care side of it.
So looking into social work, physiotherapy, occupational therapy.
Mental health, nursing, adult nursing, et cetera.
And I'm also an expert by experience too, within the faculty.
So I deliver lectures based on my own personal experiences of living with a muscle wasting condition.
As Ruth mentioned, I am also part of Muscular Dystrophy uk, and that is a charity that's very close to.
Due to my own condition, I'm currently the only female with my type in the world, so it is quite a hit and miss when it comes to going to appointments, investigations, et cetera.
I was diagnosed with cardiomyopathy, which is a condition associated with my muscle weakness.
It's the weakening of the heart muscles, so my heart doesn't work as well as it should.
I.
Suffer from neuromuscular scoliosis.
So I had my first major spinal surgery in 2019, and that was nine and a half hours.
So I've currently got 58 screws and two rods on my spine at the moment holding me up.
I am also a wheelchair user as well.
From the age of seven.
I was a part-time world chain user, but then as my condition progressed, I became a full-time.
Will change user.
So with that comes a lot of challenges, but I think we'll get onto that.
Yes.
Later on in the podcast, but yeah, that's a bit about me.
It is.
And it's quite a lot because you're doing quite a lot of things there and, when I first saw that you do travel and tourism, I was thinking now what's the relationship with that and health and social care, because obviously the research event was the health and social care faculty.
I went along to, yeah.
But you've explained how you lecture in that area and also as an expert by experience.
And of course now that you've said it, it seems quite obvious to me.
But what's also obvious is that you are really passionate about supporting other people that are in a similar situation.
And the travel and tourism bit is quite interesting.
So I wonder if you wanna tell us a little bit more about that.
First of all, why it is that you're so passionate about traveling, tourism, and what it is that you're trying to do.
So.
Before my condition got to where it is today.
I think I mentioned it to you before, but when I was six years old, I went on a trip to Stockholm in Sweden.
And for me it was the first time I've ever been on an airplane, the first time I've ever flowing British Airways.
That was quite an experience actually.
Yes.
'cause, they're such a world class.
Airline, what? You know what? As a child, like I'm living the life.
It's quite fun.
Of course.
Really? And it was the experience that I had.
So when you're a child, you get all these like goody bags on board and I remember actually quite funnily enough, this is how memorable it was that I remembered one of the air steward's names and his name was Kevin.
Shout out to Kevin.
Wow.
And he made the journey so like nice because obviously it was my first time flying.
Yes.
I wasn't scared, but I was a bit nervous because you're in the air, nothing's holding you underneath.
It's fascinating but scary at the same time.
And just the experience from getting onto the airplane and getting off at another country was just amazing.
And then obviously when you're exploring Sweden, it was just an absolute bonus because not only was it my first time staying in a five star hotel, like the elite hotel in Sweden, that was, it was like a palace.
You know when you watch home alone, yes.
You are just like, wow, it's amazing.
But being so small and looking up, you see all like the aesthetic, the architecture.
For me, it was just like, wow, wondrous.
It was amazing with those child eyes.
Yeah.
And even like even at the reception, and I don't see this in the uk but they should do it more, is that when you go into the hotel, when you start your stay, they give you a box, but it's like a wooden box of dominoes and you get to play it and you get to keep it in the end.
It was really fun.
So it kept us occupied.
Yes.
While my dad and mom went for meetings and things.
And then it got to one day where we went to the, it's like the world famous theme park in Sweden.
And I remember going on the ghost train, that was quite fun.
I was such an adventurous child before my condition set in.
Like I would love to do everything.
I was pretty much like, yeah mom, dad, let's go.
I wanna go on there.
I wanna go on that ride.
And then there was a memorable part where.
We had a day when we were just exploring the city.
So we went to seven 11 for the first time.
And obviously seven 11, we don't get in the uk it's always like abroad.
So I had my first ever slice puff that was fun.
And it was a blue raspberry one that was very nice.
And then we saw like a little crowd huddled up in the middle of like a.
You know how you get into Trafalgar Square, you get like a little square and yes, people are gathering 'cause there's so much entertainment.
There was like a marquee there and there was a Swedish fan playing like the folk Swedish music.
And I remember I got called up on stage just to like try and sing a bit of the verse.
I, God forbid, I dunno what they were saying right now, but back then it was, it all made sense.
But it was so fun.
And I think just that one experience I've almost tried to recreate.
That experience trying to go to different places.
Even my second trip to France, that was quite interesting 'cause obviously we didn't have the plane aspect.
We had more of the Euro tunnel.
So we drove all the way from London to Folkston, got from Folkston, got on the Euro tunnel all the way to front.
Yes.
And that was an experience in itself.
But I absolutely enjoyed learning about the culture.
'cause every day, whilst we were in PGL, we went out on excursions.
So we had a traditional French lunch, we had a baguette, it was so nice.
And another day we went to a snail farm.
I tried snails for the first time in my life.
Oh wow.
Did you like them? It was the, this is the thing, so I'm quite a fussy eater, so it came with a toothpick, but I took the toothpick out and the snail was at the end and I was oh.
So I put it down and I.
Garlic and herb butter paste.
It was very nice.
I was going there for that.
But yeah, I just felt bad for, so I promised myself, yeah, it was a bit like Spain actually.
'cause they used, they were serving, when we went to Barcelona, they were serving shark and I couldn't, couldn't eat it.
I absolutely loved sharks, so I couldn't do that.
I can imagine the little faces I like, oh no.
Yeah, just not.
And someone told me they bite you, and I was like, but they didn't do anything to me yet.
So it's just the experiences that I absolutely love about travel as well as getting there.
Yeah.
And of course what you were talking about when we were chatting before was actually as time's gone on, that travel has been more and more difficult for you.
Yeah.
And you've talked about some of that, and I know that you've talked about working with Muscular Dystrophy uk.
the roles that you have that might even take on there.
But do you wanna talk about, some of those issues and some of those things that happened? Yeah, so obviously I wasn't a wheelchair user until I turned seven.
It was at that key stage in my life where it was noticeable via medical evidence and visibly that my condition has.
Deteriorated, which meant that I couldn't walk long distances anymore as I used to.
I wasn't as adventurous as I should have been as a child, and therefore I began to use my first ever wheelchair, and it was a manual wheelchair as well, so I hadn't really experienced much of an upper body issue.
So I was able to self-propel where I needed, but obviously I had my parents to push me along.
Yes, if I ever got stuck.
And I think we didn't really travel much between that time because of health issues.
It was such a difficult time to say, okay, we're planning to get on a plane, or we're planning to do this when we didn't really know what was going on in my condition at the time.
So we had a period where we didn't travel much, and if we did, it was within the UK so it wasn't too bad.
So we went like Blackpool, things like that.
It was when I got my wheelchair that I started to notice the social aspects of things.
So when I used to go into school, it was like, oh, you're in a wheelchair.
Like we don't wanna be your friends.
Oh, you are different.
We don't wanna be friends with you.
Or I'd sit in a classroom and people who were my friends would be placed next to me, but would deliberately move like three seats down just to be away from the chair because they thought they would get my disability.
And when you say to people, muscular dystrophy is a.
Internal disorder.
It's not an external disorder.
It's very much perceived as like it's a disease and it's not nice because then you lose your friend.
You say your friendship circle gets smaller and smaller and smaller.
For me it, it's not jealousy, but it is that, you know, you've had friends, I've known friends of friends who've grown up since nursery.
They've kept their friendships.
Until now, and for me it was just, I wish I had that, because originally I'm from London, so I'm from West London originally in Broadway, and I moved up to Ashford in 2018, so after my final GCE exam.
And it was at that time where I think I needed my friends the most, where I wish that I would've had those friendships because I know no one here.
And it was very difficult to adapt to friends and having already gone in with a wheelchair in such a, not a small minded community, but in a sixth one where people had their cls.
People already knew each other from year seven all the way to year 11, and they've gone into six form with each other.
I definitely felt like I was the odd one out, but more than I ever felt before.
And I struggled to make friendships in six form.
And then it got to the point where we left sixth form, and I never really kept in contact with anyone.
And it was probably from uni because only about two people had gone to my university, but we're not in the same faculty.
Okay.
And it was tough because the people that went to my uni were actually the ones who were bullying me throughout six months.
So I didn't really want to, no, of course it wasn't a stubbornness, it was more the fact that I don't wanna put myself through something that I.
Just don't need.
Yeah, it's a vulnerable situation, isn't it really? So nobody wants to put themselves in that situation.
So I was on my own in that sense.
Even when I did my degree for three years, my nickname was The Ghost.
Because I did a lot of my essays and my uni work at Hospital.
Oh, wow.
I was barely in lectures.
And it was quite funny because when graduation day came, no one expected me to be there.
Everyone thought I dropped out, but I turned up degree and they were like, oh, I thought you dropped out.
I was like, no, I'm still here.
I just had to do things a bit differently.
And then I think one of the girls started saying, oh, it's because of me.
And I looked at her and went, thank you for your help.
I didn't say like.
No you didn't because she did help in the sense if I missed a lecture, she was quite helpful in that sense.
So it's that type of thing where people can't let you be, they always have to take credit for everything that you've gone through.
Like you can never do it yourself.
And actually, if there's a couple of people that I want to thank it is my lecturers specifically, who given me the support and have actually been my friends.
Throughout the whole three years of university, so I couldn't thank them enough.
Yeah, so that's really hard, what you're describing there.
All I was thinking of was ever reducing circles, so your ability to travel and that adventure that you'd had when you were younger was you felt taken from you.
And I know that you've overcome that to some degree, which perhaps we'll go on in a minute.
Your social group.
Was reduced.
And what you've described there is actually the social group and the links that you did have that people were perhaps seeing somebody vulnerable and feeling that they could take credit for that.
And where that comes from in them.
I don't know.
You know, perhaps it is something that they think, well, actually I did help you, and maybe they do believe or feel that.
So one of the things that you've talked about was your social wellbeing.
And, we've talked quite a bit about some of your friendship circles, and the way you've described that to me was around the fact that you had this sort of, your reduced, I call in my head, it was ever reduced in circles because your ability to travel reduced and then your friendship circles reduced.
And sometimes from the conversations that we had or your friends weren't particularly pleasant and perhaps weren't particularly your friends.
But actually I wonder if that's helped you to.
Develop a certain amount of, for want of a better word, resilience.
And I don't know that resilience is always the best thing 'cause it's how do you cope with something that isn't particularly pleasant, but it might have helped you spur you on in a direction towards what you do now, which is very much about supporting and being, you described yourself when we met before as being an advocate for people.
So I wonder if that's, if you could describe perhaps how some of your more negative experiences, helped you to become the person that you are and to be that champion and that advocate that you've become.
Yeah, so I think that comes down to two things.
So.
Because of my experience with friendships and being in social groups, I've learned to trust less, which isn't a good thing necessarily, but at the same time, it's helped me quite a lot throughout my life because I don't have to worry about whether someone's being fake towards me because of a disability or if someone is being genuine, like that's immediately eradicated from my head.
For me, it's helped me be more professional in work settings and it's helped me build networks, so connections with others.
For example, when we were at the conference, I was able to go out.
I had the confidence go up to someone without.
Thinking about what they thought of me and my wheelchair, I could take that away and I was, well, hello, how are you today? My name today, and it's great to talk with you.
I think without that resilience, like you said, I wouldn't have been able to go up to people, I wouldn't be able to network.
And for me now I master the art and networking and I've been able to develop my own personal.
Skills and attributes and take it within my new job role within Christchurch University.
So being the academic support, the associate lecturer and the faculty, when I'm speaking with students, I'm saying, okay, well this is not the time to look at me or my wheelchair.
This is the time for learning.
So it's helped me build that professionalism up where I don't have to worry about people judging me.
Of my wheelchair judging me on my abilities I've always said this and it's quite funny that you bring it up 'cause I've mentioned this to somebody in the past.
I'm thinking the other day was that you can't define me based on my disability because.
Academically, I'm fine.
Like there's been a lot of stereotypes growing up where people think you are disabled.
How on earth can you have a degree like that? It just doesn't make sense to me.
That's just mind blowing.
Actually.
I work so hard to the point where I have lot of friends.
I have lots of people in my life, but that has built up, again, resilience For me to do my best and actually say physically I may not work, but mentally I'm okay.
Like I'm fine.
So that's why I take pride in teaching others.
That's why I take pride in advocating for others because I know what I'm talking about.
I know that this is the issue.
This is what I face.
This is what other people must face.
There's me trying to be the advocate, bridging the gap between disability, health, and travel all through sectors.
What I'm very knowledgeable in.
That's really interesting.
Thank you dear.
And you've given us a bit there about the fact of how people are making assumptions about you.
Because of a physical disability, because they see the wheelchair.
Mm-hmm.
And perhaps they're not seeing beyond that to see you.
And that's obviously affected your friendships and some of that side, but it's also affected your ability perhaps, to get on.
So perhaps you feel like you need to prove yourself and things.
And you mentioned earlier on about, mm-hmm.
When you went through your graduation and people saw you there and because they hadn't seen you previously, you'd taken on this.
If you, for want of a better word, the nickname the ghost, because you were never there and then suddenly you'd appear again.
But of course that was because you were having treatments or because things were happening, so you weren't able to make it in, so you were learning in a different way, but mm-hmm.
But you're still a person that wants friends and wants that human interaction and connection.
Yeah.
And when you were at the conference, as I said at the very beginning when I introduced you, one of the things that made me say yes straight away to you, because you were quite bubbly and outgoing.
I was just there.
You were waiting for a couple of friends that were buying themselves some drinks or something just at the exit there.
And you were there and you were quite bubbly chatting.
You said, oh, I'll be on your podcast.
So I immediately said yes, because as you say, you've built this ability.
To network, to just go up and chat and talk to people, which I should imagine would take you quite a long way.
I wonder if what you've seen there is that to be able to even do that has taken me a lifelong work because I lost my confidence.
Like I had no confidence whatsoever.
My confidence was sort of taken by other people, even adults.
It was such a hard situation, like in previous employment, it was almost like a battle for them to understand what I'm going through my disability, how on earth am I coping? So the two things that was said to me was, one, I think you're faking your disability, which is absolutely horrendous for me to hear because why would I be faking something that I go through every day? Yes.
And secondly, someone says to me, oh, you don't look disabled, so there's no way you are.
So am I not allowed to smile? And I've been told by people previously, oh, she's so happy.
There's nothing wrong with her.
She's always like happy and smiling and like my whole personality is built upon what other people think of me, which is ridiculous.
And I think that's why I learned to self heal and self advocate for me, helping me advocate for others wanting.
So master the art of self advocating.
And if it wasn't for my dad, and a massive shout to my dad for this, he's like my personal counselor.
Okay.
Anything that I go through, he's like the most understanding person.
He doesn't judge.
He's always he gets me a bit emotional because he is always like there, you know, Yeah, sorry.
No, that's fine.
I can see you're emotional and it, but to have, to have someone like my dad is just, you are never gonna get that anywhere and that's why I don't know how often I can ever say it, but like, I love my dad so much.
Everyone says that we look like each other and it.
I am my dad's little gal.
Since life, I'm always in his pocket.
But yeah, without my dad's support, I just couldn't, I don't know where I would be in terms of in a head space mentally.
Yeah, but what you've shown there, that's okay.
And obviously you're though, that's fine.
And, for people listening they can probably hear, but I can see how emotional you are.
So I'm just gonna talk for a little bit and, sum up some of that again, because you talked about people, other people taking your confidence, but what your dad gave you was confidence 'cause he saw you.
For who you are.
You talked about the issues with employment, but then you talked about this bit about being happy and smiling, which is the person that I saw and the person that I'm seeing today.
You've been a little bit emotional there, but Quite understandably so.
Yeah.
'cause you've been through so much in your life and you're talking about somebody who has really given you so much, so of course you are.
But actually I wonder if that is part of, because what people are seeing is something that they can't perceive being happy with.
Because I've not been in the situation you have by any means, so I don't understand it.
And of course, what some people may do then if they don't understand it, is then think that, how can you be happy if you're like that? And therefore they come to an interpretation.
But you've talked there about being an advocate, and this is what we spoke about quite a bit when we met before this podcast.
And you talked about bridging a gap and how you've overcome challenges.
So I wonder if you want to talk about some of that advocacy and it is around travel because that's obviously something that's important to you, but I think people can use it, in other areas as well.
That social thing.
I wonder if you wanna talk about what it is that you do and you, I'll just mention here that one of the roles that you are potentially going to take on at the Muscular Disc Tree UK Society is a travel logistics officer.
And you explained to me at the beginning about there's tourism management and there's tourism business that really looks about that.
The business of tourism and the ethics, which is actually something that you studied because you thought, actually that's more important because if we have business ethics, then whatever business it is.
But for you, obviously it's about that travel and tourism, then it's about.
Making sure that everybody is able to do things.
So I wonder if you want to share, and I've said that about three times now, so I'll stop.
But I was giving you a little bit of time for people that can't see.
I wonder if you wanna share a little bit about that for us, please.
Perhaps telling, one of the stories that you told me earlier about your travel.
Yeah, Soly, when I moved to.
I started in sixth form at the local school.
So before I had spinal surgery, I had chosen two A levels, so media studies and computer science, which is.
Subjects that I was very interested in immediate 'cause my mom was in the filming industry and computers because I absolutely loved computers.
So unfortunately I had to drop those two due to recovery, which took about a year and a half from spinal surgery.
So I then picked up two new A Levels, which was travel, tourism, and a double diploma in health and social care, and.
The tourism side of it was very interesting because it made me look into what we deem suitable for travel, but obviously being the only disabled student in the class that took that subject.
For me, I looked at it with a different perspective, so I looked at it with someone with a disability and all my assignments were based on disability, so how would I link travel to disability? How would I link hotel facilities to disability? And it was all of that that made me feel like actually.
Travel is just more than travel.
Travel is also catering for people with additional needs.
And that's where, so I came in, so that's where I bridged my gap in terms of experiences.
And it made me understand more about the travel and tourism industry and how the travel industry lacks accommodation for disabled people.
So.
We went to a conference.
I obviously love conferences.
Okay.
So we went to a tourism events and hospitality conference at Canterbury Graduate, suffer this lecture about the degree that they were offering.
So it was tourism management, tourism studies, events management, hospitality management, and there was one person there, and I will.
Couldn't say his name because he was a pinnacle of my academic career and his name was Ken Aney and he was one of the best lecturers you could ever have, and he taught me business ethics and law.
Unfortunately, he passed away last year.
When I graduated, I found out he passed away, and for me, that was a massive dent in my life because I.
He was someone I looked up to as a second father, and if it wasn't for him, I wouldn't have gotten to the tourism management course really, because I was so interested.
And he too had a daughter who was living with a disability at the time, and he basically said to me that tourism management is where you want to go.
Tourism study just focuses on the geographical side of things, the more theoretical side of tourism, whereas.
Tourism management sort of overlooks everything from management organizations to business ethics and law, which is what he taught to Introduction to tourism, looking at current trends, and I thought, you know what? From what I've just come out of in terms of a levels.
Tourism management would've been a great add-on and a great bonus to what I've already learned.
So I've also enhanced my knowledge through my three years at Cancer Christ Church during the tourism management degree.
And in particular, I loved, I absolutely loved the business ethics module, not because of Ken.
Well, obviously one of them.
Yes, one of him, but also because for me, it fitted well with.
Disability and aviation and travel and tourism, and looking at whether businesses are being ethical in terms of is it okay to deny someone boarding with a disability because of their wheelchair type? Which is something that's what's happened to me.
And in a way, yes, I think it is unethical because you can't go nowhere.
Your wheelchair is your legs, essentially you, why are you trying to separate someone? From their legs.
And that's what my thought process was, and that's what I wanted to advocate in terms of traveling with a disability.
Yes, it's not easy, God, no.
But passenger, you have rights.
You have entitlements where you can travel, but you need to look at the requirements of the airline, but then the airline requirements isn't necessarily clear.
So what you might perceive as.
This is fine for us to travel and you've done all the emails like I did for site press, and you've got into the airport and they said, no, you can't fly.
Well, actually this is, something to the airline to evaluate the policies for wheelchair users and electric wheelchairs, and I feel like this is something that's not being done quite often because when I went to Malta, I wasn't able to take my current wheelchair, so I had to hire.
A new electric wheelchair that met the battery requirements, blah, blah, blah.
We emailed, we said it was fine, like the batteries were fine.
And the chair folded, so it shouldn't have been a problem at all.
We got to the gates at the airport and they said, is the battery removable? We're like, you didn't tell us this.
You do not speak.
Yeah.
You know, the communication is not there.
And luckily if it wasn't for my dad, the battery, he managed to remove the battery and we were able to ball.
But if it wasn't that they wouldn't have let us on and like, but you can't tell us on the day of traveling.
You can't tell us five minutes before boarding our flight that we are not allowed to travel because there's something wrong with the chair.
And so this is where my advocacy comes in as, okay.
Fair enough.
The airlines have requirements or the airport have requirements, but actually what I feel my job is to educate people with disabilities, saying that there are ways around it.
You don't necessarily have to turn up last minute to the airport and find out that you can't fly.
People who I've spoken to always say to me, oh, we just tend to stay in the UK because it's less hassle, much cheaper and more accessible Actually.
The UK isn't that accessible if you think about it, because places that I've been to, like Center Park, things like that, yes, it can be accessible.
There's so much for me from my degree and everything that I've learned, accessibility to me has so much meanings.
You have accessibility, food, so like allergies and things.
Yeah, you have accessibility activities.
Can you take part in activities? There was a school trip that I was meant to go on to east for, and all of a sudden my teacher said to me, no, you're not coming.
We were like, why? She goes, because, your wheelchair won't get there.
I haven't even been there before.
How do I know if my wheelchair can't go there? She's never been with a wheelchair.
I said, how do you know that the wheelchair can't go there? It's the assumption, but then it is also the act of the action of, okay.
I can't go there, but what are you gonna do to make sure it is accessible for me to go? And that's what I want to do.
And for me, that's why I'm really.
Excited about potentially doing this new role as a travel logistics officer with Muscular Dystrophy uk because for me, I always look at the other side.
Fair enough.
You can go to these really fancy places like Sea Life or attraction like Thor Park or Chessington.
But it's about the experience of the people who are going.
And because I'm working more with people with muscular dystrophy like myself, obviously I want everyone to be able to access an experience.
And for me that means all inclusive.
It can mean inclusive of wheelchairs, accessible transport, accessible tours, and things like that.
And for me, what better person to know than someone who's done a degree for three years? Plus an A level that's four years worth of the travel and tourism industry, plus doing my master's by research for a year.
So that's almost five years worth of knowledge for disability and travel.
And then obviously I'm on the more medical side.
I'm associate lecturer for the health.
Health and social care faculty, and also the expert by experience.
So everything I've combined into one looking at, okay, does this person need a carer? Do I look for places that have, buy one ticket, get a carer free? Things like that.
So there are so much that's available that not many people know.
And I would love to be something called, I'm not sure if you guys in your nursing world, do you call it like an outreach or a link nurse? Okay.
Where.
I wanna be that, but for tourism, I wanna be the tourism linked nurse and help people realize that there is just more to the world than the uk.
But you can travel, you just gotta go about it the right way.
And I wanna be that person to say, well, okay, you can do this, and this is what's available.
This is how you can go about it.
What do you need to do? How do you need to go about it? And finalize everything and help them from start to looking for their break to the very end when they're going on and they've come back looking at their experience throughout and building upon that for others.
And actually that last bit that you talked about there is applicable in so many areas.
So you know, yes, this is travel and I think it's such an important thing because why shouldn't people? That have a disability or whatever that is, be able to travel.
It comes back to the idea of freedom and movement, because despite being in a wheelchair, you are free to move around the world.
You shouldn't be stuck to one place or one area.
You have the right to travel the world and use that.
Right? But I wanna be able to.
Advocate for that person for that right to travel so they know that they're getting the best out of their experience.
Like how I first time experienced.
That's why I do my, so my utmost best to ensure that I recreate experiences my first ever travel, despite me being in a wheelchair or not at the time.
I've always wanted something like that.
Now for me, travel has opened my eyes so much in terms of culture, in terms of accessibility.
Like in August, I'm going to Dubai.
So I'm really excited about learning new things.
And what I've heard is that a, funnily enough, Dubai is the only other country in the world within neuromuscular center.
Oh wow.
So they're very switched on into the neuromuscular disorders.
And so I'm already part of the N-M-C-C-C here in the uk, so it'd be really interesting to see how accessibility is there.
And obviously because my wheelchair isn't viable for flying with the airline, I have three books and electric wheelchair on the other side.
Which they will deliver to the hotel I'm staying at, and we can go and experience all the accessibility areas.
And then I'm going to New Orleans for my research in October.
So we're doing the exact same thing when we are hiring a wheelchair when we get out there.
So there is a solution.
Yes, traveling with disability is very costly, but at the end of the day, it help towards an experience.
That's what I want people to do, getting the best out of that destination.
Thank you.
And it's great that you are doing these things and advocating about this.
I mean, obviously the fact that it's costly is something that is an additional cost for people with disabilities, and that might reduce their ability that even if it was accessible, that might change things for people, but.
Going back to what you said earlier on where you spoke just now about how they've been you on the airplane with your.
Wheelchair and your dad managed to take it.
And you told me a story previously of a similar type of thing where you were with your sister and you'd emailed and said everything, told them all your specifications of your wheelchair.
Yeah.
And when you got there, the attendant wouldn't let you on the plane and they finally let you on a later plane in the day they wanted to charge you for it.
Mm-hmm.
But eventually they let you on it without charging.
But actually some of these things.
You know, that wasn't an additional cost and shouldn't be an additional cost.
So some of these things are about if we make this more commonplace, if we start making this something that's normal, whether this is in the uk, as you say, 'cause some of the places in the UK aren't accessible, whether this is abroad or somewhere else, but allowing, and I like your words, freedom of movement.
You know, you shouldn't have to just stay in one place.
One place potentially being home.
What can we do to allow people to go places to move quite freely and support people to be able to do that? And some of it will incur cost by you or someone else, but some of it actually, it might just be about people having more understanding and awareness.
Like those flight attendants who could have spoken to you differently, allowed you on or communicated with you differently pre hand.
So some of the things don't have a cost to them.
It's actually about raising awareness and people seeing you for who you are.
It's links.
I dunno if you listen to last week's podcast here, but I know you said you listened to a few, but last one, last week's.
One was, yeah, about seeing people for who they really are and what you've talked about here.
Yeah.
Some people not seeing you because they're seeing your wheelchair.
Yeah.
So are there any key messages, key points, or anything that you think I'd really like people to take away from today? I would, I didn't sound very bad, but you don't need friends because I think with me, without having friendships, I was able to build up on myself without any input from others, apart from my parents.
And I feel like my parents' opinions and values is what I.
Abide to the most because they are some people who have lived with me.
They have lived pretty much every single good and bad moment with me.
And it is almost like there is an unlimited trust there.
So whatever they say is what I will build upon because they can also see me as a person without my wheelchair.
'cause it is very different when you're outside.
Your parents know you so well.
When you're outside, your friends don't know you so well because they don't live with you.
They don't know that vulnerable side to you.
And then you know that your parents aren't gonna back stab you, and you know they're gonna tell you the truth.
So I would say.
Opinion matter the most.
Yeah, you can have friends that, I'm not saying don't have friends.
You can have friends, but just be careful with what you value and what you prioritize.
Secondly, I would say that you are not alone in the sense that being a disabled person, everyone has challenges.
Like I've been through these challenges myself with travel, with school.
With employment and from other disabled people that I've spoken to, they've had the exact same issues.
So it is not just me and it wouldn't just be you.
So, if there's ever a chance that you wanted to reach out to charities, it would be great to reach out to Muscular Dystrophy uk.
They've got a really great.
Line that talks through advice, and you can talk to scope, things like that.
If you're at the point where your mental wellbeing is being significantly affected by your social wellbeing and you are quite young, so you're in the youngest stages of life.
So before you've hit my age, like 23, even your twenties, there's always people to speak to.
And always go to an adult if you are a young person because I've been through times where mentally.
I've been at a low and I wish that I've had someone there, but my dad has always been that one person for me to go to even when I was younger.
He's always been that rock.
So I'd always advise you to go to an adult of that you trust.
If you ever feel like you are having bad thoughts or anything like that, and overall, I'd just say don't restrict yourself.
Just because you can't do something doesn't mean you have to restrict yourself from doing something.
Do your research.
There are other ways around it and if you want to, you're more than welcome to get in touch with myself.
I am on LinkedIn and Ruth will, I'll put that link in the chat.
Yeah.
Which definitely, but.
Honestly, if you ever need like mentoring or coaching or advice from someone who's been there, done that, then I'm more than happy to help in that sense as well, which is very lovely of you.
But I'm just gonna wrap up those three key men messages.
So i'm not sure if I'm saying them in order.
The first is that you spoke about everyone has challenges.
Mm-hmm.
It's not just people.
With disabilities, but everybody has them.
And then you spoke about the fact of always speaking to somebody, so reach out to people, whether that be charities, which we'll put the links up to, but or whether that be if you're younger, perhaps an adult.
And it might be that it's your parents that you trust, but it might be another person.
And you spoke Eder on about teachers being the people that you trusted.
You actually talked about not needing friends, but actually it's about that trust.
So knowing who you trust.
Yeah.
And sometimes it might be reaching out to somebody that you know, can help you work out who the trustworthy people, who the people are that you trust.
So that can take time.
And then don't restrict yourself.
Don't restrict yourself, because there's always ways around it, and I think that's the bit, it doesn't matter whether it's travel and tourism, it doesn't matter what it is actually.
Yeah.
For you it's been travel and tourism, but it is about the fact that there's, there are things that you might want to do and there will always be a way around it and thinking about, right, what can I do? How can I manage this? Yeah.
And you've certainly, shared enough stories as though you talked about how you got restricted at the airports.
You've made those journeys and you've been some amazing places and you're doing.
Some amazing things that perhaps you thought you wouldn't achieve.
So No.
And I'm sure through this she'll make friends.
I hope so.
I mean, you are my friend.
Thank you very much.
Thank you.
Yeah, so thank you for coming on the show.
I've really appreciated having you here.
Thank you having me.
It's the first time I've had somebody, an expert by experience who's talking about perhaps people have been that, but who's talking particularly about their experience and what they want to do on the podcast.
So thank you for coming on.
Definitely.
It's been a really good conversation.
So many thanks and take care.
Thank you for having me.
Bye-Bye.
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