I haven’t written a blog recently as my wife and I had some very sad news early this week. Unfortunately, at the weekend my wife’s father, Lenny Rodgie, died. He was a great bloke, and he is going to be sadly missed.
I always felt I had met a kindred spirit in Lenny. He also was disabled, with epilepsy, but had gone to mainstream schools, got married and had three fantastic daughters, one of whom I was lucky enough to marry. Whatever the expectation of him was, he seemed to ignore it and lived what most people would call a “normal” life. I know that his influence means that my wife, Diane, understands me better than anyone I have ever known, and I thank him for that.
I know he had to fight every step of the way in his life, against the ignorance of the public about epilepsy, and was a huge campaigner on the issues faced by epileptics. As he epilepsy meant he had every type of fit known to science (in fact he was key to them discovering a few new types too), he was always being poked about by doctors and surgeons, and allowed himself to be experimented on through out his life. Not only in the hope of controlling his own epilepsy, but in case he could help others who had his condition. He even allowed himself to be filmed many times, even while having fits, as he felt it was important to let people, especially the medical profession, see what happens.
I know he hoped that the world would grow to understand and accept people with his disability, yet as he got older I think everyone who knew him could see the fact that things did not seem to change effected him. When he was young if he had a fit in Camden, where he lived for his whole life, people would help him but not make too bigger deal of it all. Gradually he kept coming out of his fits to find himself in hospital, with all of his clothes cut off him. Now finding yourself in hospital is always a bummer but as he knew that most times after a fit he was going to be fine, the whole situation really got him down. Worse than this, he started to find himself treated as an old drunk. Many people he met took his slurred speech, caused by a mixture of the strong drugs he was given and the damage his fits caused to his brain, as a sign of alcohol abuse and treated him appallingly. Not only people in the street, but those in authority, such as the police. At times this really effected him, and made those of us who knew him very angry. When he got sad or down, he would tell us stories of how he been discriminated against in his life. Once while staying at a B&B, he had been made to eat his breakfast in a cupboard, as the owner felt seeing him have a fit might effect the other guests. He had lost count of the number of times he been sacked for having a fit, with one job only lasting a few minutes. He was never really housed in suitable housing, and when he died he was still waiting to have a shower fitted in his latest flat, even though having a bath was highly dangerous for him. Yet, through his work with the Epileptics Society and the people he met there, he would always tell us how lucky he was to live independently, and what a great life he had had.
So, when I heard he had died I found myself filling with a fuming rage. I know that I always thought that by the time I was in my forties, as I am now, that the world would be a very different place to the one I grew up in. The thought that the guy who fathered my wonderful wife had died still waiting to be seen as an equal in the society he lived in, really hurt. The fact that he still found himself being made to feel second best, that he had to fight to get things he was entitled to, and that he still dreamed of being cured so he could be “normal” made the tragedy of his death even greater.
I only have 17 years until I am the age he was when he died, and I know that I refuse to take the slow pace of change any more. I don’t know quite what I plan to do about it yet, but I hope you all agree with me that we cannot go on with this “slowly, slowly catchy monkey” approach that seems the rage at present. I know that I want a disabled child who is born today, to grown up in world where disability is “normal”. They should be hit their 17th birthday, in a world where they have had all the chances they would have had if they had been born able bodied, and live in world that is totally accessible to them and where inclusion and equality is so natural that everyone doesn’t even have to think about them. We cannot allow cost, or time, or difficulty to be used as an excuse to slow or stop those changes any more.
We have a really long way to go, but we must get there. Not only for ourselves and future generations, but for all those great people, like Lenny Rodgie, who died while we were on the journey.