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| Photo by Venteco |
I came across the quote above (in the title) recently and I liked it very much because it makes me think of Robbie. It seems to sum him up perfectly, there is a mischievous twinkle in his eyes and you can never be sure that he will not misbehave. Unfortunately it is also true of his legs, even when he seems to be walking well you can never be completely sure that they will not misbehave. Sometimes they stop him in his tracks refusing to move at all, sometime one leg just gives way leaving him in a heap on the floor, but more often than not they just hurt really badly and walking or even just sitting still becomes an endurance test.
Most people will know that Robbie hates what he refers to as 'green trains' with a passion. They are used by London Midland on his route to work and they simply don't offer him enough leg room to sit for an hour (to or from Birmingham) without unbearable pain. He goes to a lot of trouble to plan his journeys so that he avoids them. He gets up stupidly early every morning just to catch a 'blue train' to work and have a less painful journey. When he can't avoid the 'green trains' he has to break his journey at Coventry and wait for a train with more leg room. It takes such a lot of effort just to make a simple journey and it makes him very tired because he has a very long day, so it is not surprising that I worry about him. I have to be very careful what I say because he hates to make a fuss about his pain or to admit that he struggles sometimes. He will be cross with me for mentioning it, but my greatest fear is of him falling down the side of a train. He says it is just an irrational fear and I am being silly, but it has happened to him before and if it happened again I know he could get badly hurt.
Yesterday when I got home from work I was very concerned because it was clear that he was in considerable pain. He wasn't exactly walking like John Wayne, more like John Wayne's grandad and every movement seemed to be agony for him. I did my best to help, but the frustrating thing is that there is so little I can do except to nag him to take his tablets. I try my best to tell him to be careful, but he still does as he likes. I admire him for that, he hates to give in, but I am so relieved that he had the sense to work from home today.
I rarely mention my work when I write the blog, but today I am going to break my own rules because this trivial incident made someone feel so good and all it took was a little effort. A lady came up to me to ask a question, I could see that she had difficulty in walking and when she asked her question her speech was hard to understand. I guessed that she may have cerebral palsy. I latched on to the couple of words that I understood and repeated them asking if that is what she was looking for. I was rewarded with a huge smile as she realised that I'd understood her without making her repeat the question. I told her that I would show her what she was looking for and I walked with her at her pace to the correct place. Her friend came up to us and the lady almost danced with excitement as she told her that I had understood the first time she spoke. It was such a small thing and it cost me nothing, but it made a big difference to her - and it made me feel pretty good too.
In my family there are several people with disabilities. I don't think it really gives me any special insight, but the one thing that they all have in common is that they want to be able to do the things that other people do and they want to focus on their ability rather than being defined by their disability. I don't really understand why other people seem to find that so difficult to understand that. My son has a disability (autistic spectrum disorder) which would not be obvious to someone who only met him briefly. Ordinary things like shopping have brought extra challenges for him - and me! There have been a few occasions when people who should have known better have treated him very badly and made things more difficult for him. Usually this could have been avoided completely if people were a little more accepting of difference and less critical of behaviour that they do not understand. My son is amazing and I am really proud of the way he copes with life, but it has taken him a long time to admit to his disability and to accept help when he needs it.
Robbie also has a largely hidden disability, he has spina bifida and it causes more or less constant pain and difficulty in walking. He wants to be seen as just a normal person like everyone else, but he has had to admit that sometimes he needs extra help with certain things. OK, I know that Robbie is a little more unique than most, and the word normal really doesn't suit him, but you know what I mean. Little adjustments like having additional leg room makes travelling much less painful for him. I don't need to list everything, but a lot of small adjustments add up to a big difference to someone's ability to cope with a disability. So when you see a young and apparently able bodied person sitting in a seat offering extra leg room, or using other facilities provided for people with disabilities don't be too quick to judge, their disability may not be obvious.
We awaken in others the same attitude of mind that we hold towards them.
