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Hopefully Famous (before bound!)

Blog written for MDUK Trailblazers

Romina Puma, who has muscular dystrophy, blogs about being a comedian and her new show for the Edinburgh Fringe Festival.

My name is Romina and I have muscular dystrophy, the FSH type. I live in East London. I moved here five years ago from Italy.

I do stand up comedy. I had started doing it in Italy but when I moved here my English was very basic and I did not have the confidence to go on stage, so I had to stop for a while.

When I moved to London, I first worked as a waitress, a very optimistic choice given my condition. But as the condition progressed I could not do that job any longer, so I went back to comedy and I created a bilingual Italian/English new material night, where, initially, I could perform in Italian. After three years, the night is still running in central London and growing.

A couple of years ago I also started performing in English. This August I am taking my first solo show “Not Disabled…Enough!” up to the Edinburgh Fringe Festival.

For a performer, the troubles with accessible venues are the same as they are for the audience. My condition has got worse in the last few years; from walking with crutches I now use the wheelchair almost all the time, although I can still walk indoors. Because I am not bound to the chair I can still perform in many venues where I won't be able to go to once I am bound to it. However, to manage access to many venues I had to buy a foldable powered wheelchair.

Most of the time, gigs are in upstairs or downstairs rooms in pubs, which means I have to find a safe and sound corner where to leave my chair. So having a foldable chair comes very handy. Fortunately I have always found very nice people working in the pubs; all the time the staff help me to store my chair and keep an eye on it.

Another obstacle for me, as a performer, is often the stage. Sometimes it is high and I cannot go on on my own, but the other comedians always help me to get on and off.

The toilets are another issue. Sometimes I am lucky and the disabled toilet is on the same floor as the gig, but sometimes I am not so lucky, so I have to control my bladder to wait as much as I can in order to go only once, as going up and down the stairs is a huge effort.

I did not know that I had a disability until I was 29 years old, although, looking back, I think I always had a kind of a feeling deep inside me. When I was about four years old my parents bought me the original Barbie and Ken. One day, I was celebrating their wedding and when I bent Ken on his knees it broke in two, so I made him a wheelchair. Even my toys were disabled.

Also, growing up I often wondered what I would do if I ended up in a wheelchair. The answers were various from desperation to acceptance and all in between.

When the doctor gave me the news that I had muscular dystrophy, I was shocked, angry, frustrated. It took me a while to go back on track and metabolize what was happening to my life. After ten years from discovering I have this condition, I am still here living my life in the best way I can. In fact, I have never been happier in all my life.

Obviously I have my ups and downs, but who doesn't! I struggle with many things, from walking long distance, to opening cans, to getting up from the chair without any help and so on, but I do not look at those struggles as a problem, more of a challenge.

Because my condition is progressive, I like to describe myself as a “work in progress disabled”, every day I need to find new ways to adapt and do everything I used to do when my body was still working without any need for aids.

As a comedian I love to make people laugh and I also like to laugh at myself, I don't take myself seriously so when I am in trouble I just try to have fun with it instead of getting stressed, upset and panicking. In the end I do believe that laughter is the best medicine, at least for the soul.

The neurologist I had in Italy used to tell me "I wish all my patients were like you" because if your mind is happy, your body is happy too. Even though you are in pain or you struggle, it feels like less painful somehow.

Comedy has always been and will always be my passion. What really scares me is that my condition gets worse before I can become famous, make a living out of it, reach a level where I can play bigger gigs that are in accessible venues. I am still in the open mic circuit where most of the venues are inaccessible, but I have been working really hard on my show and I hope that someone will notice me in Edinburgh. Fingers crossed!

P.S. I am going up to Edinburgh for the whole month of August with my show "Not disabled...Enough!" if you fancy a laugh I would be very happy to see you there. Please click on the link below for more info.

By Romina Puma

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