Hello, Mark here. A friend of mine suggested that I contact BBC Radio 4 about Adrian’s blog and our story in creating it. I thought that it would probably be unlikely that I get a reply but I’ve done it anyway. 🙂
I am hoping that my story will connect with something either you are covering or something a colleague is working on. My story is a family story that has something new to say about autism spectrum disorder, ASD, and a battle for Adrian my brother that changed our lives by fighting for disability equality. Fighting against the misconceptions and living a life with a sense of family duty to take over from my mum.
Just because I have an altered concept of time and need asistance with daily activities doesn’t mean I don’t want my own independence. At times I see other guys my age doing everyday things that I would also like to do for myself.
Being a gay man I had always seen my future family as being my brother and I. It just seemed wrong somehow to start a family when I have Adrian. But that’s not the reason I’m contacting you. The real story is actually about building my brother a voice so he can communicate. He has never been able to talk like you and I and over the years everything communication aid we tried didn’t seem to help him communicate in a way he wanted to. Adrian’s new voice started off life as a fully illustrated eBook that anyone who met him could download onto their phones from amazon. Instant and comprehensive, this guide could be read during a lunch break or on a bus journey. The book was just as effective as a deep and meaningful chat with someone you click with. Its kind of a strange way of looking at it but it was like reading an user manual for my brother that anyone could get their head around. The book started getting dowloaded by teachers and parents all over the world and I started to realise that many people could have their lives changed for the better just by having a loved one write them a book. Just like I did for Adrian.
Imagine having someone tell you you can’t make choices for yourself because its for your own safety. You would be pretty annoyed right.
A couple of years went by and I could see the book needed to be updated to make sure that it was still helping Adrian in the best way it could. But I felt like this book should be updated as often as possible and that’s when I explained to Adrian that it would have to become an online blog written from his point of view but managed by me. I would be Adrian’s Ghost writer and I would have to make sure I was posting information as if I were Adrian and he was able to read and write. Obviously a bit of me is in there to, that cant be avoided but then I could see that a big part of the magic Adrian blog has is from our mum. She worked so hard to be Adrian’s voice and gave everything to build a life he could choose for himself. The foundations of Adrian’s blog has my mums spirit and all the connecting parts holding this foundation together are his sister and brother, mum and dad and all the people that care about Adrain’s life. We have all contributed something to Adrian’s new and far reaching voice. Since it went live a month ago the website has grown in a way that communicates not just some ideas and words but a deeply honest insight into a young man who lives with autism. With reviews on products tested by Adrian and personal stories Adrian wants to share about other people facing similar hurdles just like him. This website has become a part of Adrian but its also something we all feel connected to. It’s like a part of Adrian’s body and mind that we all helped to build.
Imagine having lots of important things to say but no means of saying them. Imagine how frustrating that would be. Shouldn’t we be writing loved ones with communication difficulties a far reaching voice with the power to make a change?
I hope Adrian’s story is of interest to you.