At the end of another fascinating, busy and interesting week I receive an email from then CHECT CEO Libby Halford requesting an article for the next version of the Infocus newsletter. She wants an article about someone who has lost their sight due to Rb, but has not allowed blindness to get in the way of them achieving great things. My first thought is that I haven't achieved any great things. My next thought was, "of course being blind has got in my way!" This didn't seem to be a very good start from the point of view of Libby's requirements until I began to realise that all things are relative and that the fact that I have a full and active life could be an encouragement to other blind people and to the parents and relatives of those with Rb.
So, who am I? My name is John Ramm, I am 45 years old and I am totally blind due to bilateral RB. I had both my eyes removed at the age of around 10 months, and I have had artificial eyes ever since. I live in Wrexham North Wales with my lovely, sighted wife and my four beautiful daughters. Three of my daughters can see but my third daughter, Bethan, inherited RB from me and had to have both eyes removed at the age of five after over four years of every treatment under the sun failing to hault the formation of tumour after tumour!
So what do I do? I'M A DRUMMER – but more of that later. Well, I do a mix of things at the moment, but what is taking up most of my time is the Clore Social Leadership Programme, on which I am a Fellow. The programme is about developing leaders in the third sector whether they are employed in that sector or, as in my case, a trustee of a third sector organisation. I am a trustee of the RNIB and RNIB is sponsoring a specialist fellowship for someone who is visually impaired. As well as being a trustee on the main RNIB board, I chair its work in Wales and there are always internal boards and committees to sit on if you have the time. I'm also a freelance trainer - training other visually impaired people to use various technologies.
So how exactly has being blind got in my way, you may be asking?
As I said a moment ago I am a drummer as well as a sound engineer but I am not currently working in either of those industries – if anyone has contacts that could help please let me know.
I am absolutely certain that if I were sighted my life would be completely different. My dad was an engineer, and there's a good chance I would have followed him into either a mechanical or electrical engineering career. Alternatively, I always quite fancied being an RAF pilot, or if none of that worked, I thought that the life of a professional assassin sounded pretty well paid for not a great deal of work! Being blind, though, none of these routes was open to me, and perhaps that isn't an altogether bad thing. Sight would, however, have been enormously helpful in pursuing a career in the music industry – the ability to drive is in itself really useful, especially for a drummer!
I drum regularly for my local church which just happens to lead me on to the fact that I'm a Christian which has I believe kept me just about sane over the years. I teach drums a bit, I have a small recording studio, and I ran a PA company for nearly three years with a good sighted friend, who could drive, at the end of the nineties.
So has life been interesting? Yes! Am I rich? No! Am I loved? Yes! Would I have my sight if God gave it to me? Yes! How do we measure our quality of life? I don't really know.
It turns out that I have a lot more to write about than I thought. I haven't talked about schools or the main stream/specialist debate, the role of support workers, how blind people fit into society, chairing meetings as a blind person, bringing up children as a blind person, and so on and so on; so perhaps I could ramble on further in the future.
Blind people are just exactly like other people – it's just that they can't see. But then again, as a good totally blind friend of mine once said, "Who'd be blind?"