Podcast: Fundraising, family and fighting for a fairer world

The Disability Download

In this episode, we chat to Martin Hywood, a fundraiser for Muscular Dystrophy UK, on life before and after his diagnosis, and how quarantine affected him.


Martin Hywood: It dents the dignity, it dents the pride of anybody having to ask for extra. We don't want extra, we want equal.

Erin O’Reilly: Hello and welcome to The Disability Download, brought to you by pan disability charity Leonard Cheshire. I'm Erin O'Reilly and on this podcast, we respond to current topics, share stories and open up conversations about disability.

Hi everyone, and thanks so much for tuning in to another episode. And you know you've tuned into a great conversation this month as Kirsteen catches up with Martin Hywood, who works at Muscular Dystrophy UK.

Martin was diagnosed with Muscular Dystrophy when he was 23 and we're really grateful that he's come on the podcast to talk about his experiences - everything from accessibility, to shielding during covid, to his joy of fundraising – so let's give it a listen!

Kirsteen Plop: Hi Martin, thank you so much for joining our Leonard Cheshire Podcast today. Absolutely delighted to have you join us and we're really excited to hear about your story and your personal experiences of living with muscular dystrophy. And before we kick off, I think it would be really good if you'd be happy to give a quick introduction to yourself.

Martin Hywood: Hiya Kirsteen. Thanks so much for having me. Yeah so I'm Martin Hywood. I live with a condition called muscular dystrophy. I was diagnosed with this life limiting muscle wasting condition when I was 23 years old. I'm 47 now and um yeah, it's... It really has been life changing having this diagnosis and it's been an extreme rollercoaster in many different ways.

I was your typical teenager, into football and music and the Britpop scene was coming along when I was leaving school and I left school at 15 and my parents insisted that I got a job, so I left on the Friday and I started work as a motor vehicle engineer on the Monday. And, uh, I loved it. And I all I enjoyed was mechanics and I enjoyed fixing things and uh, and I was actually very good at it. And I, you know, went up the workshop faster than what I ever thought I would.

Kirsteen: So it sounds like you know before your life turned around you thought you had a sort of certain life planned out and it was growing at a faster but more positive rate than you'd maybe expected when you were younger.

Martin: Yeah, very laddish. You know. Like I said, music gigs going to football at Santa Pod Raceway, going to Silverstone and cars racing as it was all physical and fast and a lot of adrenaline.

Kirsteen: No, definitely, you're young and you're invincible. I think everybody has that that feeling for quite a while and then obviously for a lot of people, certain things make them realize that they aren't. But for you, obviously you had quite a difficult realisation.

Martin: Yeah, so as I said, I was quite successful in the motor industry and I was headhunted actually and was asked to come to a main dealership in the town that I live, and I went there and I wasn't there that long at all actually, and I had slipped in the workshop, and I've dislocated my right knee and my leg got trapped under the car ramp and the injury wasn't - I wasn't getting better as was expected by my GP, you know and all the while my older brother was having problems with his lower back as well and we both got sent off to the Radcliffe in Ox Oxford where we had a muscle biopsy and that led to our diagnosis of muscular dystrophy, you know.

And I was in that room in Oxford and dumb with all my family around me. And we got this diagnosis and there we were told that it was, you know there was there was nothing could be done so yeah and so then I was. It was, you know it was extremely sad. I didn't know what the future held and then obviously I was extremely angry as well and I was in a place where it was why me? Why have I been given this diagnosis, you know?

Kirsteen: With your brother being diagnosed at the same time would that have felt a bit like a double blow that somebody you loved had been diagnosed with the same thing, or to give a bit of sort of peer-to-peer support with somebody who I guess really understood.

Martin: Yeah, it doesn't matter. I don't think it matters whether you're the older brother or the younger brother you become extremely protective and emotional with that, you know. So yeah, that's yeah. Seeing a loved one with the same thing as you is extremely difficult.

Kirsteen: And how was it for the rest of your family?

Martin: Yeah it was a lot of ups and downs for all of us, but luckily you know I at the time I had my partner Michelle, who’s now my wife and I'm so lucky that I have that person in my life and our three daughters as well, you know, and I can't imagine what it would be like in this community as a lone person with a disability. It must be another different level. I'm extremely lucky and fortunate in my life to have loved ones around me and be able to do the things and give me the independence I have.

Kirsteen: Absolutely, and I think you know, for anybody who knows you and for anybody who doesn't know Martin, he is an extremely positive, optimistic person. And I think that anybody who does know you will agree that being around you instantly lifts their spirits. But you know, obviously, you've spoken about this difficult time and that feeling of why me. So how did you manage to kind of talk yourself out of that, and how have you managed to bring yourself to be that sort of positive role model, if you like, that you are today?

Martin: Yeah, I did. It wasn't really up to me, it was just probably due to, like I said, due to my wife. I think one day and I can't remember when and I don’t know how far back it was, but I think I was having a bad day and feeling sorry for myself and my wife said to me that I should concentrate on what I can do and not what I can't.

So I went to work for Volkswagen UK as a collection delivery driver, entry level job and climbed my way up and got my experience of sales there, was extremely successful with that and then I took that knowledge of office ethics and I starting to get some IT skills and I went to work for an IT company and climbed up that company. Then I went on to work for a pharmaceutical company and for 10 years I was working on clinical trials and these clinical trials consisted of cancer and epilepsy and stroke and indeed my own muscular dystrophy and I thought I've made it.

You know, I have actually progressed in my life to a place where I wanted to be. And I'd gone from saying why me to why not me. You know, this is an opportunity now and all the while my wife was seeing children being diagnosed with these conditions. And we've, you know, we've got three, happy and healthy girls. And we couldn't go on being content with our own lives. Seeing these children getting these diagnoses.

So we began fundraising and we moved one mile and we raised £1000 and then we just kept moving miles and as a family we've raised £185,000 so we just took all the negatives after I got a kick up the backside off my wife and we tried to turn them into all positives, and that's what we've done ever since. And you know, there's not much I would change now.

Kirsteen: And I think that's a huge sort of testament to you and to your wife. And I think that you're kind of that excellent example of- there's sometimes a feeling that you know your life can end after a diagnosis like this and you know, especially one like muscular dystrophy, which is essentially quite life changing. But you know, I think we've discussed in the past how life doesn't actually end after that diagnosis. It just changes, would you agree with that sort of feeling?

Martin: Absolutely yeah, absolutely. I'm going down a totally different path now. Some of it's not accessible, but you know. I mean, it's a good path to be going down. Like I said that I don't think there's much I would change after all the hardships that we've been through, even now.

Kirsteen: You touched earlier on the fact that you felt really lucky that you could be surrounded by your loved ones, and that included, obviously your wife and you know your mum and things so when the pandemic hit how did shielding during COVID affect you? And you know how do you think it might have affected other people in in in the same position as you?

Martin: A side effect of the pandemic was me for me was losing the ability to walk actually, because if you don't use these muscles you lose these muscles. So I was pretty much in my bedroom slash front room 24/7 and not going anywhere and obviously I was extremely petrified of COVID-19 because I live with a low immune system, it really affected me, both physically by losing the ability to walk and psychologically and mentally just not being able to see family and friends.

I'm quite a, you know, extremely optimistic person and yet I couldn't get in touch with anybody really. It was really awful for me, but like I said, we was really fortunate with the fact that I had this network around me and I cannot imagine what it would have been like to be a person with my disability being alone. I always count my blessings and I always try to see the best of a bad situation.

So I was off work for a long period of time and then during that time being shielded an opportunity came up to work for the charity that had been raising funds for. I had an interview and I went up against some really competitive people that had been corporate fundraisers and I got the job and I love it. You know, it's hard work- you know yourself charity work is very difficult, but it's so rewarding, it's so rewarding.

Kirsteen: In terms of I suppose with COVID, did you feel you had any extra support or was there any other support that you think could have been provided to maybe make things a little bit easier for you?

Martin: Uh, not necessarily for me, but I think that you know, even now, I think that there's people are some people are still shielding. There is opportunities for tech companies to get involved with disability charities and say you know, how can we help? Because like I said, there's still people, there's still people, vulnerable people, elderly people that are staying indoors, the pandemic locked us, locked everyone up so everyone - regular, able bodied people got to experience what isolation feels like for a lot of disabled people in our communities. You know this is 24/7 for a lot of people and so hopefully with that you get some compassion, some empathy, and so, yeah, it's an opportunity for conversations.

Kirsteen: Absolutely, and then, I think, coming off from that is that you know for a lot of people the world is starting to open up and restrictions are easing quite a lot and it would be interesting to hear how you feel now that the world is starting to open up.

Martin: Yeah, this sort of can go into you know how we work, how we could talk about accessibility because this is an opportunity now. You know you can get businesses and everyone else to take us into account because we can open up like we used to be, or we can open up in a different way, and we can open up and make this world that we live in more accessible to more of us.

Because there's so many injustices with accessibility and the way that this world is seen as even and equal for everyone when it clearly isn't, let's not talk about that. Let's talk about the opportunities that we have here and the opportunities that we, as disabled people, can have conversations with businesses to say this is how we can get it right going forward?

Kirsteen: And is that something that you find businesses are more eager to hear about at the moment? Are you finding that more businesses are maybe a bit more willing to listen?

Martin: It's half and half you know. I spoke to you recently actually about my experiences on holiday with accessible- you know, we realized this summer that our holiday to Devon was probably the last time we'll have to be able to go into a caravan. And then before we go next to whatever the destination is that we need to be more proactive with where's an accessible toilet if I need it when we're out and about, which shops were accessible?

You know, I went to an ice cream shop with my daughter I just wanted to buy an ice cream, I just wanted to buy an ice cream with my daughter and she wanted an ice cream with her dad and we couldn't get into the shop because there's a step and then you have to make you know you have that- then you have a decision to make about pride, your own pride and waving down the shopkeeper to get them to come out and put a ramp down so you can get into the shop and you just ask yourself: Why should it be that way? Why do I need to make myself known? Why do I need to sit in my wheelchair outside of a shop waiting for something to happen? If this was any other demographic in society, it would not be acceptable.

You can't enter my premises and come and purchase my products because you can't get into the shop, so why is it acceptable for disabled people to be rejected from so much? You know it's a real bugbear of mine, and like I said, I'm transitioning from ambulant to wheelchair now and I'm not perfect. I don't have all the right words and all the right language, but I'm realizing that that there's so much injustice with disability in this country, and like I said, though, we won't, I, I will try not to concentrate on that what we need to do is do something about that. Let's have conversations. Let's get disabled people around that table. So we can say, this is what needs to happen. This is what size the door needs to be. This is where a ramp should be without me having to ask for it. It dents the dignity, it dents the pride of anybody having to ask for extra. We don't want extra, we want equal.

Kirsteen: So you know, obviously you've just touched there on businesses being more engaged with speaking to people with lived experience with disabilities, and it makes you wonder why are businesses not trying to tap in more to the purple pound?

Martin: Yeah, so for those that don't know the purple pound refers to the spending power of disabled households. Organisations are missing out on the business of disabled consumers due to poor accessibility both physical and digital and not being disability confident in their customer service approach. Now, having that attitude will end up costing businesses a loss of £2 billion a month by ignoring the needs of disabled people. And I just don't understand why these things are not being addressed. Because these are big digits you know this is not small money.

Kirsteen: I mean, that's unimaginable figures really isn't it, so why are more retailers and different organisations not investing more in their premises?

Martin: It really, it's like speculate to accumulate. It's one of the easiest and oldest sayings. But a little bit of an investment at the front end can bring you so much more at the back end. You know, it's uh, I'm not a businessman. I've only just recently joined LinkedIn within the last year, you know, but it's so elementary.

Kirsteen: Absolutely, and I think you know, a lot of people don't know what they need to do to make it more accessible. And is that why these conversations are important to be had? Is it maybe that fear of speaking to people with disabilities for fear of using the wrong term or offending somebody? Do you ever wonder if that's maybe one of the reasons that these conversations aren't had so much? I don't know if you've ever felt that yourself.

Martin: Yeah, that does make sense and you know what? We all have to start somewhere. Like I said, I've moved from an ambulant disabled person to a wheelchair, and I mean I have a lot of learning curves myself and I still ask questions and I still stumble across certain things and don't have all the language in the words, but you need to start somewhere you know. So we need to start to have the conversations and if people make mistakes and people trip up on certain things, you just help them back up again. The best things in your life will happen when you take yourself out of your comfort zone, so let's go and talk to these businesses. They come out of their comfort zone and we tell them the way it should be, and then we'll all succeed, you know.

Kirsteen: Yeah, I completely agree and I think that that does lead into the next question: What can or should be done to make things better? And it's building on that conversation and I guess it's about giving people the confidence to have these conversations.

Martin: Absolutely, you know the projects we've done around the changing places toilets up and down the UK, that's all about getting the appropriate person with the appropriate disability involved in the conversation and we need to do that right across the board from changing places, toilets to every single business, retailer or restaurant up and down the UK.

Unfortunately, you know any one of us could receive a devastating diagnosis this afternoon that could change your life tomorrow and so this is why people need to be proactive rather than reactive to certain conversations we have and be open towards those conversations as well, like I said just now about don't be scared of education or whatever. Whatever age you are in your life, it's never too late to learn and I think it's good that you know if we can get people to listen first rather than react to something, then I think that's always the best conversation to have.

Kirsteen: I think one of the other issues that's potentially there is that sometimes conversation around disability at the moment is not always appropriate, or it's not coming from an educated place, you know that there's that sort of thing, and I know we've discussed it before, the story about Love Island and how they had their first disabled contestant, but you know it was being done in a way that wouldn't make viewers feel uncomfortable.

Why is dating somebody with a disability, why is that something that should be stigmatized? Or why is that something that somebody should be praised for, dating somebody with a disability you know it's it doesn't make you a good person to date somebody who has a disability and it doesn't make you undateable if you have one. Those kinds of conversations, do you find that they are sometimes taking us back a step in these conversations, or do you think it's actually quite a good door opener for you to come in and be like, well, actually it's not a problem.

Martin: This is that that's a whole different podcast. Honestly, that's a different rabbit hole we could go down with this because I'm a massive fan of the undateables as a program and it's very marmite isn't it. In the respect of the Love Island story, that's where somebody tried something and got it wrong. It's really tough as well because it's like you can see that they're trying but it's just more, it's more of a slap in the face. It could be a start. It could be, the fact that we're talking about it right now is something that is positive that we can take out of it? I think that somebody tried to do something good and it's ended up not so good.

Kirsteen: But you know, it's been that conversation starter, hasn't it? It's been people sort of thinking you know, well, why is that and an issue? And I think it's got people who may have not actually thought about this in the past, it's maybe getting them actually thinking about it, and it's maybe tapping into an audience if you like, that perhaps we haven't. And all be it, maybe not in the best way, but like you say, it’s a start, isn't it? And it's that positive spin on it in terms of: could it have been done better? Yes. Is it good that has been done? Yes. And you know, I suppose there's definitely that positive side to it, which is what you're always so good at doing.

I think you know, as I've touched on at the start of the podcast, you're always so positive and seeing the bright side of life now, which is why I think your story is incredible, and I think the one thing that I would love to ask you and I would love to know would be, being where you are now and you know being where you are today, if you could speak to yourself on the day that you were diagnosed, well, what would you say to yourself now knowing what you know about where you are?

Martin: Wow, thanks for that. That's a whole emotional. This is like pass the parcel, layers of emotion with this, I mean I would like to tell myself to be a bit braver, a little less emotional and I would like to tell myself that you know, as Bob Marley said, every little thing is going to be alright.

There is a silver lining in every cloud and I seem to have found about 50 Silver Linings and I wouldn't change a thing. What I now have is a disability and a voice to raise for others, and I like that I think when I was growing up when I was younger, I listened to a lot of rebel music and punk rock and these lyrics that make you stand up against the system and the establishment and you it gets into your blood and then you become more determined because of it and learn, behold, 25 years later, everything that I was listening to in the respect of music, then punk, reggae and ska and all the things that were going against the system and rise up and be determined to make a change for others. That's all coming into effect now.

So everything you know, yeah, so yeah I would just tell myself that everything is going to be alright and actually this diagnosis will be- will lead to so many different positive things, so many different positive opportunities and an opportunity for change as well. And I like that I like the fact that you know. People like me and yourself can come together and try and make change for everyone. And then I'm the sort of person that won't just say it. I won't just post it on Facebook to get some likes, I won't just put it on Twitter to get some retweets. I'm talking about action and yeah, I'm looking forward to seeing what the future holds up with some, you know, people standing shoulder to shoulder with me to try and make change 'cause I believe that we can.

Kirsteen: I think that's just so amazing that you have such a kind of positive and an ambitious mindset, and you know, I think we've discussed this before, but I think you're the absolute embodiment of possibility with disability. And you're such a good role model for anybody who's recently been diagnosed with a disability. It doesn't just have to be muscular dystrophy, you know.

Martin: Yeah, I think, you know, that's one of the main things with me is the fact that you know I've got like I said three girls and I just want to be the best Dad I can. I just want to be the same as every other regular dad. I just want to be the best example that they take in their life going forward and if it goes further than that to my nephews or nieces and to further family to friends and people who see me on social media if, you know, I don't like the word inspirational, but if I can make a difference to people and make them make a difference too, then I'm doing my job.

I could have turned into a shell and been extremely negative moving in my life and no doubt my muscles would have wasted faster, but I'd rather just try and get up and stand up and make a change.

Kirsteen: I just love speaking to you, whenever I do I just think you can make a bad day- you can turn it into a good one just with your sort of positivity and honestly you were made for the role that that you're in now and to be doing everything that you're doing with your fundraising and your raising of awareness. And I'm sure that so many other people who are listening to this podcast, we'd love to be able to kind of follow your journey and kind of see how you're moving forward. So I think it would be nice if you could maybe talk about your blog.

Martin: Yeah, so the reason that I started writing was because my teacher always told me I was rubbish at writing at school, so there was my determination to prove him wrong and then it was just a release as well. Because you can type in to avoid you if someone reads it then great, but if they don't you've, it's sort of extracted something from your brain, a bit of stress that didn't need to be there so you can write it down on paper. And if people read it and listen to it and then that's good, that's great. But yeah, it was more of a help to me, to get things out of my system.

As well as to tell people about, you know, raise awareness about this condition. Raise awareness about disabilities and also bring humor to it as well. I think it's massively important that sometimes, you know, we, we have to have a laugh, you know, and the amount of times that I've written things that have been quite… I'm not a natural writer. I don't have a thesaurus sort of, uh, in my vocabulary of writing huge 12 letter words and stuff. I just I…I'm pretty basic but I'm lucky to have a couple of friends who are extremely good writers you know a friend of mine recently, John Howie wrote a book. Uh, he's an author and he's wrote quite a few books actually, and he sent a message back to me and said, don't ever change your style of writing.

I know you want to be something else and have big long words, he said. But if you- You need to keep the way it is. Because when you I read your blog, it's like having a conversation with you in a in a pub over a pint and a packet of crisps. He said when I read your blog, it's like we're looking- we're face to face to having a conversation, so don't ever change that, so I haven't. I tried once to say some big words, but it just it doesn't. It doesn't suit, so my wife always tells me off for saying imperative rather than important, just say important Martin. Don't say imperative like why did you say Imperative? It's just a word that I've seen. I saw it once about seven years ago and I've used it in every single blog. But yeah, it's just fun and it's a way to, you know, express myself, get things off my chest, get things out in my head because we have to take care of our mental health as well as physical health. Which I think is really important, and that's what my blog does for me and yeah.

Kirsteen: So before we finish up the podcast, then Martin, are you happy to let us know the name of your blog and how to access it?

Martin: Yeah, it's really complicated actually. Uh, it's MartinHywood.blogspot.com and you could go on there and I think my videos are included in there as well with videos we made as a gift to muscular Dystrophy UK before I worked at the charity, but I just want to say thanks to Leonard Cheshire and I think it's fantastic when two national charities come together and collaborate, I think collaboration within the third sector and the charity industry specifically is a fantastic word.

And I don't think charities should be scared to work together. I think it's fantastic that charities do work together. Thank you Kirsteen for giving me this opportunity to talk and also thank you so much for your friendship from the start of my career as a fundraiser, a corporate fundraiser, and Um, it's invaluable. So thank you so much for your time. And thank you so much for your friendship.

Kirsteen: Oh and thanks so much to you too as well Martin, it's been an absolute pleasure getting to know you over the last- It feels like it's been years, but it's only been a few months, hasn't it? But no thank you so much for agreeing to record this podcast and for being so open and honest as always.

So thank you so much.

Erin: That was a really great chat between Kirsteen and Martin covering a whole load of things, from disability representation on TV to mental health and blogging. So thanks again to Martin for coming onto the podcast and just being so open about his experiences.

So if you want to give Martin a follow on social media you can find him at @HywoodMartin and I'll also post the link that and to his blog on the show notes over on our Simplecast site and also on the podcast page of the Leonard Cheshire website as well.

And if you want to learn more about Muscular Dystrophy UK you can follow them at @MDUK_News and like I’ll said I’ll link to that as well and also to their website in the show notes too.

Please, please do let us know what you think of the episodes by emailing us at disabilitydownload@leonardcheshire.org or you can DM us on insta or twitter @LeonardCheshire - and if you have a guest in mind that you think should be interviewed on The Disability Download, tag them on social, tag us and let us know!

Thanks so much for tuning in everyone, stay safe, until next time, I'm Erin and this has been The Disability Download!