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THINKING - October 2011

Am I alone in groaning at frenzied lectures on ‘overcoming’ barriers and the benefits of a ‘can-do’ attitude from all sides of the disability arena?

Call me Grumpy but it’s not like I haven’t tried … and tried … and tried … to do both and I am finding the preaching of all the fervent evangelists just … irritating.

I am probably least annoyed by the pontificating of those born with disabilities who have known no other world than that of which they speak. They often, along with those who have life limiting but functional conditions, share the self-belief that confidence bestows in overcoming barriers, both personal and societal. Succeeding, albeit with difficulty, is ‘normal’ for them. What’s not to feel good about that? Every barrier they overcome widens their world, improves their quality of life and gives them more choices. They are keen to share their experiences with others and make a better world for everyone ‘like them’. A noble endeavour and all to the benefit of the communities they reach out to.

I also listen sympathetically to the newly disabled point of view, sharing their initial shock and horror at changed circumstance, empathising with their pragmatic adaptation to a revised reality. Like them, I once resolved to ‘find a way’ … to live a life as good as the old one/be a role model for others /be positive in coping with whatever life may bring … or some variant thereof - fill your own ‘blank’ in. Good luck to each and every one making this journey.

Most deeply infuriating to hear from are the know-nothing-but-have-an-opinion-anyway do-gooders (politicians? friends and family? the man on the street?) who won’t listen, but should, to those of us who know that however ‘can-do’ and positive you are, there are just a ton of normal activities that some severely disabled people cannot do. Sorry, I really can’t be bothered to list them – do a bit of reading on my site and/or the internet if you want more information.

Thirteen, long, painful years down the disability line, I am left with the feeling that most of the pontificating on this is all just bollocks! Positive and can-do? It exhausts me. Bitter experience has taught me that when I force the ‘can-do’ by attempting the ‘possible’ regardless of consequence, it is just no fun for me, or EaZyD who has to pick up all the slack. The pain, disruption, cost and hard, grinding difficulty outweigh the benefits of participation to such a marked degree that some things really are not 'possible' at all.

Despite my best efforts, huge swathes of what was my life - the frenetically enjoyable 'normal' life, like that of any 'normal' person - remain completely barred to me and I know that's not what I'm 'supposed' to say. But, that is the way it is - partly because of my illness, partly due to other's prejudice or perception and partly due to real physical barriers – and none of these things are going to disappear any time soon. There's neither the societal will nor resource to do it and, to my mind, that lack of will and resource is fanned by the comforting inference of this myth of positivity - that with enough can-do 'attitude', disability 'issues' may be 'overcome'. What rubbish!

Whilst others get understandably annoyed by being thought 'brave' for getting out of their house and thoughtless on-lookers think 'if Stpehen Hawking can do it...', the unpalatable fact is that, for some of us, chronic illness and massive disability make a difference in life so vast that being positive and ‘can-do’ – oh, and chucking tons of our own money at it - will never be sufficient to create a quality of life comparable to that of the next healthy person’s or even the next less-disabled person.

Let us not allow others to kid themselves or us by continuing to peddle the Positivity Myth. Being positive may make us all more cheery about disability but it will never, in itself, be enough to overcome the very real obstacles to living a full life that severe illness and disability create. Enough already with the lecturing.

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