This article was written by Corinna Roberts for a 2015 issue of The Information Point newsletter Our World. Corinna lives in Anglesey, North Wales with her husband Brian and son Hari Glyn who is one and a half. She is diagnosed with recessive myotubular myopathy and recently appeared on the S4C television programme Taith Fawr y Dyn Bach which in English translates to ‘The Little Man’s Big Journey’.
The original concept for Taith Fawr y Dyn Bach grew from a one off programme about the shows presenter Jay Lusted. Jay has a form of dwarfism and he first did a programme about his life, how he thinks and feels about being disabled and the actual word disability. The programme was received very well, so it was decided to expand on the idea with a series of programmes where Jay meets other people with disabilities all over Wales.
I got asked if I would like to participate in the show by the shows producer who I have known for years. I was a little apprehensive to begin with, as I didn’t want to be on a programme that showed being disabled in a negative light but the producer asked if I would like to see the first series of the show before I made my decision. Once I had seen the DVDs I loved the show and agreed that I would be interested in taking part. It was clear that the programme aimed to show people living with a disability, any disability, in a positive light and to open peoples eyes to everyday people who live their lives, do everyday things and have goals they want to achieve, showing that the only thing that makes them different, is that they happen to have a disability.
The programme makers had a few people to choose from with all different disabilities (the other people who appeared in the series with me were Tina who has Friedreich’s Ataxia, Dafydd who is autistic, Catrin with Spina Bifida and Tanwen and James who both have learning disabilities) but they only wanted six people, so I was interviewed by the producer and then the programme makers were asked to make their decision.
They had not heard of centronuclear/myotubular myopathy before and thought it would be interesting to follow my story – the theme for the series was family, I was expecting my first child at the time and unsure how being pregnant would affect my condition or if my baby would be affected by the condition. My pregnancy was another reason I decided to participate, I thought that it would be something great to show my little boy when he is old enough to understand, for him to see me pregnant with him and to see himself only a few months old – I thought it would be a pretty special thing for him to see. My sister Tracy was also pregnant with her first child at the time and appeared on the show too. I was due in November and she was due in December and the programme makers wanted to compare our pregnancy stories. As my sister does not have a disability they wanted to see if I had a more difficult pregnancy due to my disability or not. Also Tracy was unsure if her child would have my condition.
It was a pretty strange experience being filmed and I really dreaded the first day of filming, as I have never been filmed before and it was them filming my last day at work before leaving for four months maternity leave, so it was a pretty strange day anyway but once the first day was over I felt happier and more relaxed about the filming.
It took over our lives for a while, just a 30 minute programme took weeks to film, but the filming crew were great, they understood that I get tired really easy, so they would try and only do half days a couple of days a week.
The response after the show has all been very positive, people that live around me who have seen me about have been happier to approach me and ask me about my condition and said that they now understand a little more about my disability. I was relieved when the filming was done but it was a great experience and I would probably do it again, as I would do anything I can to promote positivity around disability and to raise awareness of centronuclear and myotubular myopathy.