World changer

Last week I found the perfect antidote to all the annoying sport on the TV just now, honestly I think I will scream if I once more here the word “World Cup”, “Wimbledon” or even “Tour de France”, but the On Demands service came up with the cure, “The Tudors”! I never got to see it when it made it’s first run on the BBC years ago now, so to find that I had missed it again on Sky, was like a final blow, I thought I had had all my opportunities, but there it was in the box sets, just waiting. It was truly the best thing that had happened for a couple of months and apart from the weekend, as I know Adam hates this type of program, I have been eating it up with sheer pleasure. Although Adam may not like costume dramas, we do totally share our dislike of sport, so I am now faced with the task of collecting up enough good TV that we would both want to watch, to fill in two whole weeks as the commonwealth games aren’t that far away. There are not too many times that I can say I am glad to be housebound, but I am so glad that I will not have to leave the house during the games, especially as we don’t live far from the Hampden Park, the site of the opening ceremony and the athletics, Glasgow will be a living hell during the games. Sorry if I sound like a grump, but I do get rather fed up with the constant impression that the entire world thinks sport is everything, you simply don’t hear on TV, radio or even the press, the facts that there are huge numbers who simply hate it, remain silent and silenced, as we are never given a chance to voice our opinions other than amongst ourselves.

I don’t know why it surprises me that no one is given a window to put across their feelings, when there is a majority who sees things differently, I am never sure if it is because I have become disabled over the last few years and I notice it more, or if it is actually a true fact that the needs and lifestyles of the disabled are beginning to become in the main more mainstream. I remember when the company I worked for changed offices and one of the directors tried to say that they personally had worked with another director to put in place the adaptations required to the building to accommodate me, where all done out of the good of their hearts. They didn’t like it when I corrected them and said that even if I hadn’t worked there they would have had to lay the office out as it was regardless, as all new offices and public buildings had to be wheelchair friendly by law. It wasn’t their ignorance of the law that annoyed me, but their attitude of how they had bent over backward to do something extraordinary for a disabled employee and I should be grateful for it. It is an attitude that all too often still stands amongst those who don’t have someone who is disabled in their family, or as a close friend, seeing the disabled as just part of life on TV is growing, but TV is the only place that enters people’s homes and they learn without even noticing. On a couple of occasions I have seen people with MS in soap operas, but never have I seen someone with Lupus, or Lyme’s, or Fibromyalgia, or any of a huge list of autoimmune conditions that lead to disability, invisible illnesses that can take over anyone’s life at any minute. Nor have I even once seen the issues of being housebound even mentioned, although I can see that selling the idea to soap operas might be hard, especially when most just wouldn’t believe that people who are housebound still have lives to live, or could be possibly interesting in any way.

I have to say that being ill like this has from the start made me feel not part of the world I once knew. From the day that I started finding walking more than few hundred feet without a rest, I found myself unable to lead the life I once did. Being disabled starts far sooner than the medical world or the recognised test for disability allowance would have us believe. If you can’t walk half a mile and stand for more than 15 minutes, you can’t make any of the normal journeys to work, or to do shopping that most of us have to do. Nor can you have a social life as you can’t go out with friends to a pub or nightclub, your world starts closing in long before the point when most would even consider putting the word disabled, next to their name. If you use all your energy to ensure you are still making a living, then you also become housebound sooner too, for 4 years I went no where other than work or to the hospital, I wasn’t housebound in the way I am now, but I was life restricted, outside of work, I was housebound. You can’t divide life into conveniently titled packages, the way people think about disability has to change and to change it, well it has to be put out there clearly in front of them, to teach and to prepare, as not one person can be sure that their life won’t become a mirror of mine in time.

I’m not stupid enough to think that I can change the world, but I do wish that unless the world is willing to change and to embrace all viewpoints and lifestyles that don’t hurt others, that they would just stop trying to say that the world is already inclusive to all, when it clearly isn’t.


Please read my blog from 2 years ago today 07/07/12 – Unexplainable Loss 

The other evening I was talking to Adam on the settee, not a big deep conversation just the normal chatter sparked by the TV programs. I’m so used to not being able to find the next word, that that has just become the way I talk, stutter, silence, words, stutter, words, silence, but on this occasion the words didn’t just vanish so there was a pause, all words vanished, I sat there totally lost not sure what…..

2 thoughts on “World changer

  1. Another great post and so true! I sometimes feel that though disabled people appear to be more visible out in society as it were, things are going backwards every day.

    Marion xx


  2. All in all this world, as is and was, is heavily ‘disabled’, weak, ugly, ignorant, heartless, as can’t, doesn’t want to really share other innocent people’s physical and metaphysical difficulties.
    My two beloved late parents too, in different times and for different reasons, were physically disabled.
    Also reading this and now and then your tweets gives me somehow the wish to keep on working at my web site with blog and consider me still somehow lucky being at my age – towards 70 – still capable of moving with my legs and thinking with my fucking brain…


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