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  1. Nirwan says:

    I wish I’d known that becoming (obviously) delsbaid didnt mean I was less of a person.I wish I’d understood that my fears about using visible aids were stupid and disabling in themselves.I wish I’d had the courage to reject ‘help’ and advice that were actually making things harder for me.I wish somebody had been honest enough to tell me the truth about how this society *really* deals with people who have chronic illness/disabilitys. For example the facts that many people you thought of as friends will disappear,that the medical community have very little interest in helping you to have some quality of life,and that fighting for appropriate treatment/care will become your new norm. Had someone told me that the safety nets I’d blithely believed exist for people in need are a fantasy,that the ‘human rights’ people bang on about no longer applied to me,and that doctors dont always know best (or indeed know ‘anything’),instead of perpetuating the myths able-bodied people need to believe for their own peace of mind,my mental health wouldnt have suffered nearly as much as it has throughout this journey.And finally (because otherwise I’d go on all day!) I wish somebody had told me that not all disability aids have to be flipping beige, ugly and ‘medical looking’..For me it was the emotional/psychological side of things that I really needed help with at first. The first few ‘disability catalogues’/leaflets (full of old-people models) I was given ended up being thrown across the room because of my horror and denial that this was my world now. I’d never thought of myself as prejudiced against delsbaid people,I’d never been uncomfortable around obviously delsbaid people in everyday situations,but the presentation of disability I was given when my own body fell apart was repulsive to me. And I know from reading blogs and support sites that I’m not alone in that emotional struggle. So while knowing about things like Radar keys and VAT exemptions etc is important,its equally important to address the emotional impact of finding yourself in a situation where you need that information so that people can be empowered to use it instead of being scared to death of the alien world they’ve fallen into.On a slightly different note,I’ve recently written a ‘blog post’ about societys attitudes to wheelchairs versus all other forms of wheeled transport,and I’m looking for somewhere to ‘guest post’ it.(I dont have consistent enough energy/brainpower to have my own blog). Would you be interested if its up to scratch for your site?Lola

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