That 5 letter word us spoonies have in the bucket load. Our loved ones and those that care for us do not understand why we feel guilty, nor do they like that burden word the trouble is we feel like it. We are limited in the ways we can contribute to a society already and made to feel terrible for that. Negative phrases are used to describe disability and the press every other day has a story about how we are all scroungers. Whilst like in every walk of life there are bad eggs that will exploit a system you cannot tar all disabled people in the same way. I mean we wouldn’t tarnish all MP’s as expenses fiddling fu@ks, ok bad example. We wouldn’t tarnish all multinational companies as tax evading whor@s oh wait another bad example. I’ll get there in the end. Two bad examples or the reality is if there is a way to screw a system those that can do it and are dishonest will do it. They won’t work to close the loops, or be proactive in trying to make the system better instead they will attack the weakest elements of society to plug the gaps.

So with a ruling section intent on making disabled people feel bad about themselves and “how expensive” they are to keep/look after etc, and for me certainly despite London 2012 and the legacy the Paralympics was meant to have in the UK and making society inclusive I find time and time again places and especially in my county, and my well chronicled fight with my Town Council I find we are anything but inclusive. The ongoing fight just to keep the one accessible park and playground combined whilst trying to ensure a new park built post 2012 in 2015 and with a significant amount of prior warning from me of the needs for disabled people to be able to access it is exhausting, tiring, upsetting and one more fight and struggle on top of daily life that people with disabilities could do without, but if you do not make a stand who will stand for you, the powers that be certainly wont. I must however at this stage thank the vast majority of hometown residents who have spoken to me or become involved in the campaign because despite not being in need themselves they have given up a lot of their own time and energy in supporting me. This support when I am shattered and ready to throw in the towel helps no end. I think it is this exhaustion and need to throw in the towel that councils and companies alike rely on when entering a battle they know they shouldn’t under the equality act.

So back to the original thread is it any wonder we feel guilty all the time? We feel second class, and we feel that we are a burden. The prime example I can give for this is all the money we have spent on aids to make my life a little easier and each time I feel guilty. I got home today to news that my custom measured wheelchair had arrived, instead of being excited I was feeling guilty as once again several hundred pounds was being spent on me. We have been saving hard of late for a new car for my wife as hers is now costing a lot each year, has a number of miles on the clock and really needs trading in. Without a car my wife cannot do her job and without her job, well that’s not worth thinking about. The reality however is that spending 10 times the cost of my wheelchair on a new car for me is great, the design is what she has been looking at for a while, it was on budget and we are awaiting news of it arriving in stock. I really couldn’t be happier. Spending money on anyone else is a far better use than on my equipment, why is that though?

2 thoughts on “Guilt……………..

  1. I know just how you feel and I feel guilty for silly things as well as important decisions. It really hurts though when you are constantly reminded of your limits by a close family member who despite knowing me through the onset of my chronic pain is still happy to exclude me from helping bringing up my grandson saying”you can’t do that” even when I know I can by adapting my own method. Oh well that’s life 😊

    Liked by 1 person

    1. Yes it is all about adapting your life isn’t it. We don’t wish to be excluded from things, exactly the opposite we want to be included it is a shame that so many of the things needed to be included are so expensive and make us feel guilty. The best thing I have is a large board that goes over my lap created by both my dad and D’s dad it is used as a playmat for figures and a table for playing board games and all from the comfort of my chair. If we draw or paint we now do it at the dinner table so my height and not my LG’s. There is nothing more frustrating than being told you can do this or that because as long as we are honest over what we can and can’t do the best judges of our own ability is us! X


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