What is it like living with a disability when only 15 other people live with your diagnosis?
Dylan Lombard is such a talented and kind human. I hope you enjoy listening.
Connect with Dylan:
Dylan's Website: https://dylanlombardphotography.co.uk/
Dylan's Instagram: https://www.instagram.com/be_yourself_dylan/?hl=en
Dylan's Email: firstname.lastname@example.org
Connect with Peta:
Peta [00:00:02] Hello and welcome to The I Can't Stand Podcast the podcast answering your questions about what life is like when you have a disability. My name is Peta. I have cerebral palsy. I know I'm your host. I have a very special guest for us today, Dylan Lombard. Dylan lives with a very, very rare condition that affects his life in many, many ways. Before I hand the podcast over to Dylan, I just want to apologise for my voice. I have come down with the flu again and also remind you that you can always get in contact with me, whether it be for a question for a future episode of the podcast, or suggest a guest for future episode of the podcast. You can contact me via my Instagram. My handle is at Peter Hooke via email email@example.com or via my website icantstandpodcast.com. Over to you, Dylan.
Dylan [00:01:18] So my name is Dylan and a 19 year old from Scotland. I have a disability called MDP Syndrome stands for Mandibular Dysplasia with Deafness and Progeroid features . And well the affects that can occur from this condition as the loss of hearing and the loss of body fat. And they can sometimes be hard to walk on barefoot. And also the unability to do physical activities and because there is no fat to support the bottom of my feet.
Peta [00:02:12] And from talking to you, I understand your condition is really rare, isn't it?
Dylan [00:02:18] Yes. It's extremely rare. So so far there is only me and 15 people in the world who have MDP Syndrome
Peta [00:02:29] Is that hard having a rare condition? I know you don't know any different. Like, I don't know what. It's not like to have Cerebral Palsy, but do you think it's hard to be apart of the rare condition club. Or do you see it as a positive?
Dylan [00:02:46] I do see it as a positive and negative. I think the positive is that it's just. One and so many people. The negative side to being so rare is the lack of awareness that this condition has and the lack of understanding that people have of it.
Peta [00:03:15] And because it's so rare, you then feel a responsibility to advocate for yourself and really be out and proud and be visible with your condition, particularly on social media.
Dylan [00:03:30] I'm trying to connect to people who really love to hear my story, and they're always asking questions and always just getting to know me better. I do see that lots of people do gain loads of people really quite quickly and sometimes I feel that the bigger audience you have, the more harder it is to. To just ignore the like, the negativity that is there. And because there's so many more people that follow. But I feel that it's also it's also really good to see that so many people are interested as well. Because I feel like social media for me has been a great way to showcase my passions. And there has been some. Sometimes there is negativity and it's just the will to just push away.
Peta [00:04:40] Listening to the fact that people ask you questions, what is a question that you wish people asked you more often?
Dylan [00:04:48] I feel that people should maybe ask. Questions, maybe not related to what my condition is. Maybe it is something that I'm interested in. So I feel like I would want more people to ask questions about what I love doing and what I'm really good at.
Peta [00:05:13] Well, one of the things that I know you love doing and something that you're very good at is photography. I'd displayed your work in Glasgow. What was that like?
Dylan [00:05:24] Showcasing my photography has really helped me to connect to more people and show the world and how I see the world. And so I feel photography has really helped me. Especially during lockdown. Photography really helped me during lockdown just to get out and explore. It was just something that really helped me to keep going and to keep being positive, but also to just love the way I was.
Peta [00:06:01] You said before that you're trying to communicate your viewpoint to the world, to people looking at your photography. So what do you hope your photography says to the viewer?
Dylan [00:06:16] I try and explain a story through my photos, so I try and express how I feel in the photos. Most of the photos that I've taken have featured just one figure, one person, and a building beside the person. And basically that person showcases how I sometimes felt lonely or alone. And I tried to show that in the photograph. And it's basically trying to tell the audience with the views that I'm feeling at that moment.
Peta [00:07:03] And I also know, because I've been following you for a while on Instagram. I also know that you have many of its clients, including poetry. Talk to me about why you write poetry.
Dylan [00:07:16] I like to write down how I feel. And I feel when some things are put like one stone and were able to join them together to me to make a poem.
Dylan [00:07:33] We are not all born the same. How boring the world would be. Being different is the best thing. Makes us a lot more free. There are some very different. Disabilities here and there. They're still human beings, treating them equally and fair. Everyone is affected definitely. Can to mild to severe. Still don't hesitate to say hi. No need to live in fear. Don't refuse to get to know someone. We shouldn't have a set view. Regardless of their diagnosis, they're still just like you.
Peta [00:08:23] I wanted to ask you, because you obviously are someone that's very intuitive and you take in the world probably to more detail than someone like me, because you are so artistic and you really can interpret the world in a different way. Do you feel like you understand the world differently to other people.
Dylan [00:08:49] Yeah. So I feel the I feel the way that I see the world is an ever eurpting volcano. I feel at the moment the world and it's quite crazy and there's a lot going on and sometimes we feel a bit intense. Sometimes I feel like maybe a wee bit worried about what is going on in the world. I feel like again, just writing down how I feel helps me to process and to make things calm and peaceful.
Peta [00:09:34] I have to say, I wish my techniques to help me with my positive mental health were as beautiful as yours. Dylan. Tell me about why dancing is important to you.
Dylan [00:09:48] I feel when I dance I'm able to block off all the negative thoughts. And I feel when I dance, I'm able to show that I'm free. Like, I. Like I just kind of, like, flying almost. I really love since I've joined a dance class. This dance class called IndependANCE have really helped me. They have given me new opportunities. And like a few years ago, I went to perform in Spain. And it was a really great moment to showcase the dance that we had created to people around the world.
Peta [00:10:37] How do you find going from the solitary work you do to going into the dance work you do? Do you enjoy working with other people?
Dylan [00:10:48] I used to find it quite difficult working with with other people. And since I also have autism, I, I find it really difficult to work with other people, but also to communicate with people. I feel that sometimes when I'm talking to someone, I'm not always looking at them. Eye contact. But also I sometimes don't know what to say. So someone asked me a question. Sometimes my mind's...I think maybe a little bit longer to process what that question is. I feel that photography is basically what I love doing is to get me out and explore, and dancing is a way to help me feel calm and to help me feel less stressed.
Peta [00:11:45] Is there anything you like or even love about your disability?
Dylan [00:11:52] I feel when I was younger it was hard to love my disability because it was hard to love the way that I looked. And I feel as I got older, I've really been able to tell a story through my disability and that's something that I've really loved now, to tell different stories to people and how I coped. But also to show people... To help people to look past my disability and to look at what I'm really good at rather than looking at how I look.
Peta [00:12:34] So on the opposite side of the coin. Is there anything you don't like about having your disability?
Dylan [00:12:42] Again its the lack of awareness that's around disability not just my condition, but many disabilities. Lot of who may say that is all about how people look. And I feel that disability, people with disabilities will sometimes just be judged really quickly. And people are not going in deeper and looking at their personality. And also, it's just that kindness and positivity that lots of people with disabilities have. And people are just looking. Not looking at that. They are looking at how they look. So they're just judging people with disabilities really quickly. That is what I'm trying to do, trying to educate people about disabilities. And because I feel that that's what I want people to know, is to look at people's personalities and to spread that more kindness and positivity.
Peta [00:13:55] What do you wish people better understood about living with a disability?
Dylan [00:14:01] So I feel the more people need to understand what it's like living with a disability. They go through so much in their life. And there is also always positives as well. There's a really good quote that I always remember. Sometimes it may be raining, but there is always that sunshine up in the sky. There is a really stormy day that someone's having, and then the next day something will happen. And then the sunshine will come out and. Oh. It'll make them happy and positive again.
Peta [00:14:52] What do you hope the future will be like for people with disabilities?
Dylan [00:14:57] I hope the future for people with disabilities is more positive. And the whole the the the disability community and people that want to help raise awareness for disability can help educate more people about disabilities and make sure that people's disabilities aren't looked past, that they're given the same amount, those opportunities as everyone else. But also just to look at their personalities and also just look at how kind and positive, people with disabilities can be.
Peta [00:15:44] Thank you for listening to this week's episode. I hope you enjoyed it if you did. Can I encourage you to leave rating and review? If you listen on Apple Podcasts or follow the show on whatever podcasting platforms you're listening on. Have a good one, guys. Bye.