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Sam just does "normal stuff"


For those of you who have not yet met or heard of Sam, let us introduce him. Sam (21) has been a member of the MPS Society for thirteen years and we’ve had the pleasure of meeting him at previous conferences and watching his compelling videos on YouTube. We recently caught up to reflect on our first Adult Social Weekend in Manchester and covered even more important topics such as TV’s Taskmaster, Manchester United (his favourite football team), writing theatre plays and aerial acrobatics.

“I just jumped on the tram as I was already working in town,” says Sam when we mention how impressed we were that he joined the Adult Social Weekend by himself without knowing who else might be there. Our admiration, however, does not resonate with Sam who simply enjoys being mobile and the freedom it offers, like working part-time as front of house staff at a Manchester theatre or joining MPS Society events. Even the sometimes limited accessibility of public transport which led to an occasion where he was forgotten on the train and had to miss his stop, do not stir any anger or frustration in him. Sam plainly comments,

“It wasn’t great, but it’s just one of those things.”

Meeting other people in similar circumstances and talking about aspects they have in common is important to Sam. Though these connections are by no means solely based on a shared condition or disability. “We talk about normal stuff, and I quite enjoyed the meal,” remarks Sam with a cheeky smile whilst his mum’s voice appears from the background urging him to add that these get-togethers have helped Sam come to terms with his own condition, Mucolipidosis Type lll (MLIII).

It is not long into the conversation that Sam’s positive attitude and pragmatic outlook on life become obvious. On the other side of the screen, we feel a little trivial for asking about challenges and ‘bad days’ to understand what drives Sam, when it is so clearly his interests and passion for the things that bring him joy, such as singing, playing the drums or co-writing a play with his mum Shirley about his hospital experiences on the children’s ward. Sam is excited and energised when he shares plans to apply for Arts Council funding that may eventually fulfil the big dream of performing on stage and touring the country to raise awareness by sharing his story. Whilst he is under no illusion that he has chosen a difficult career path, Sam enjoys being creative and spending time with others who share the same passion. Most recently, this happened to be high up in the air, being gracefully lifted and swirled around in his electric wheelchair at an Extraordinary Bodies circus event in Plymouth.

“This is something, I thought I would never do. It was nice to look down on people for a change.”

Take a look at the amazing footage!

Sam is determined to make his disability his ability. He is neither shy nor does he seem affronted when asked about MLIII.

“I am an open book if you ask me. It’s part of me and I don’t know where I would be without it.”

Whilst we would describe Sam as inspirational, he is the last person to say so. Sam doesn’t brag about his achievements (even though he could!) or dwell on disappointing memories. Having a community that understands, and sharing his experiences with others, is what gives Sam ultimate support. If everything gets a bit too much, there is always another season of Peaky Blinders to watch or one more match of FIFA to play, just “normal stuff” as he would describe it.

“Our disability doesn’t define you. It’s part of us, but it doesn’t have to take over your life. Well, it might do. Find your passion and your hobbies and do it as much as you can.”

These are powerful words not just because Sam openly shared them with us but because he lives by them.

So, if you are a talent agent reading this, please get in touch with Sam, he has all the tricks up his sleeve! We wish him all the very best and will be the first in line for tickets to see his play. In the meantime, take Sam’s recommendation for “The Little Big Things” musical in London if you can, whilst he eagerly anticipates his travel adventures to Dubai and Thailand over Easter.

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