Mithun (23), Birmingham, UK
There’s no question: Mithun has got a smooth air about him and great style. He has shaved a couple of racing stripes into the end of his eyebrow and gives the camera a no-nonsense, rock star stare as he poses beside his black Volkswagen van. He outfitted his van to his liking, from the ramp in the back that enables him to maneuver his chair directly into the passenger seat, to the shiny black rims that give the van its noticeable character. He recently had the front lights blacked out and the badge vinyl wrapped in carbon fiber. “Just needs a number plate now, then I am done. I can't believe what I have created. I have created something awesome, it’s definitely a gangstamobile!” acknowledges Mithun. “And I paid for it myself,” he says with pride in his eyes.
Mithun works as a self-employed disability consultant, which is another major source of pride.
“I help to show other families what it’s like to live with carers. Or how to use important technology," he explains.
Mithun is involved with Action Duchenne, advising others living with Duchenne muscular dystrophy about how to get the support they need, including options with caretakers, accessibility rights and training for using supportive technology, such as the small module that enables him full use of his iPhone. He is also a member of DMD Pathfinders, a charity that campaigns for improved standards of health and social care for teenagers and adults with DMD in the UK. Over the years Mithun has helped the Pathfinders in many ways, including raising money for educational workshops and developing employment opportunities for young men like himself.
When he’s not working or involved in advocacy, Mithun enjoys taking pictures, a passion inspired by his love for architecture and travel. Whenever he can, Mithun takes trips to London. “London is like my second home,” he says.
“Having carers gives me independence to go out and the freedom to do anything. But it’s hard as well. It’s hard to get the right people.”
Mithun employs his own staff -- he currently has nine carers -- and interviews each one before hiring them. He looks specifically for “bubbly, fun, good-vibe people.” And most importantly, they need to be active. “When I go outside, I’m running all over the place. They have to be able to keep up!”
“I try to live a normal life. As much as I can,” Mithun says. “If you are motivated to do something, you live longer.”
Mithun recently completed surgery which extended his feeding tube from his stomach down to his small intestine to help solve the reflux and resulting chest infections that he’s been battling. He is feeling well after the surgery, but he admits,
“Sometimes [Duchenne] does get me down. Not all the time. But sometimes.” He explains that he doesn’t necessarily want a cure for his disease, he just wants something that can sustain where he’s at.
“The research is all for the younger guys,” he says. “They need to think about the older guys too.” Mithun, who feels like not enough focus goes into developing a treatment for adults with Duchenne, is both disappointed by that fact and understanding of the added risks associated with clinical trials.
Soon after recovering from his recent gastrointestinal surgery, Mithun was hospitalized for a chest infection. He had to stay in for three weeks. “I forgot what outside looked like,” he says. “They sent a psychologist to talk about my problems concerning my condition….I was feeling down that day and the guy certainly was not helping, kept going on ‘It’s your condition, it’s your condition."
"I know my condition is going to deteriorate but it doesn't mean I'm going to stop living and not follow my dreams and goals.”
“The most important thing to me right now is my health and for me to accomplish and achieve my goals,” Mithun shares hopefully. “Such as getting my own space and finding someone to get into a relationship with.”
Mithun hopes to get married someday, though it’s been challenging to meet people. “I’ve been clubbing but it’s not the same [for me] as an able-bodied person. Maybe people don’t know how to talk to someone in a wheelchair. Sometimes I don’t know if it’s possible to find the right person. And that’s the hardest thing.”
“People just see the wheelchair, they don’t see the person in the wheelchair,” says his mother, who Mithun lives with and also acts as a caretaker for him. “Sometimes I get lonely,” Mithun admits. “It’s always just me and the carer. But,” Mithun brightens. “I like going into work because I get to meet people.”
And he smiles a big smile, which illuminates the best part of Mithun’s style: his original, unbreakable self.
“Life's a battle with DMD,” he says. “But I never let my condition get in the way of my life.”