Portrait of Duchenne – Ravi’s good life

Ravi's good life despite Duchenne

Ravi Metha

Corporate Development Intern at Muscular Dystrophy UK

In this seventh interview in our “Portrait of Duchenne” series, La Force DMD talks with Ravi Metha. Ravi has a business degree and Corporate Development Intern at Muscular Dystrophy UK. As a 27-year-old with Duchenne, he has a good life. This interview is his word of wisdom for all of us. Ravi’s good life.

 

Ravi is committed to living life to the fullest despite DMD!

He has deep brown eyes that are full of life and determination. He loves to grab a drink in pubs with friends in London. If the place isn’t accessible for a wheelchair, it doesn’t matter, because he’ll find a way to get in there. You have to fight to live a normal life when you have Duchenne. He has a message for all of us: either you’re part of the DMD community… or you’re not! To people who are completely healthy but sometimes feel life sucks, o every single one of us with preconceptions about disabled people, o the parents, to the young child, to the young adult with DMD:  

 

“Don’t just give up, never give up, on living a normal life. I’m always saying don’t give up and don’t take no for an answer.”

 

In the video, Ravi Metha answers our questions about living with Duchenne

 

  • Overcoming the challenges of living with DMD

When I was younger, there were challenges like getting help during the daytime, getting dressed, personal care, going to school, basically all walks of life. But as I got older, I learned to adapt more, I learned, you know, compromise … kind of a big word that you have to get used to, you know, because, sometimes you’re going to get your way but, you know, other times you have to fight quite a lot to get what you, kind of… need and what is rightfully yours to have. In terms of having… going to a public school, you have to fight for that, going to university you have to fight for that, having the care I need you have to fight for that. So it is a lot about fighting, and so you know, that’s kind of, you know, my daily life, to be honest. But as I said, I’ve got older now; I still have barriers, but, you know, it’s something I don’t think about; I always think about getting past it, you know. I don’t; I’m not going to be like, seeing there’s no access getting into a pub or a bar doesn’t stop me, I still get in there. But you know I try to live life as full as I can.

                                                              

  • What would you like people without Duchenne to know that would make your life better?

Well, you know, I think what I come across is… they see physical disability, so they see me having a mental disability as well. So, you know, there are people, you know, that are quite condescending, quite patronizing, because they think: “oh, he’s in a wheelchair, so he must be disabled in every part of him,” so that’s a big barrier for everyone, not just in the UK but everywhere around the world. So I mean, yeah, having people know that your mental capacity is still there, even though your physical capability is not the same as everyone else. And also, you know, we’re normal. We’re still normal human beings; I can be in a wheelchair but, you know that shouldn’t affect anything.

 

  • Your words of inspiration for other people with DMD

If there’s a barrier or if there is, like, an issue going somewhere you need to go, don’t just give up, never give up, because otherwise, you’re going to be the same all the time, you won’t live a normal life. I am always saying, ‘don’t give up and don’t take no for an answer.’ And, yeah, just, I always, am just in a wheelchair, but that is nothing to me; I still feel like I have the same rights as everyone else and that what I fight for.

 

To receive the next interview in our series “Portrait of Duchenne,” please subscribe to our newsletter.

 

 Acknowledgements

We thank Action Duchenne, who received us with open arms to conduct a series of interviews.

 

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