Great piece in the Daily Mail yesterday by Amanda Cable: The Boden girl, my sons and a heartfelt message to a world that wrote them off …
Even if you hate the Mail and all it stands for, I encourage you to click through and read the entire piece because Amanda writes really well about living life with her family including her young twin sons, born with with cerebral palsy (CP).
CP is a condition currently in the news because Boden have used a young girl with CP in their latest ad campaign and, like many of us, Amanda hopes that this represents the beginning of a seismic change in how people with disabilities are perceived in the mainstream.
Those of us who become disabled are pretty much all stunned at the attitudes, expectations and sheer difficulty of living life in our presumed-to-be tolerant and forward thinking society. Like Amanda, most of us had not been exposed to overt prejudice prior to this and imagined, given our own tolerance, that those affected by illness and disability were reasonably supported – with care, resources and society’s acceptance and understanding. Those are the things we pay for with our taxes and live our lives practising, no?
Shockingly, no, and am I alone in finding this beyond weird?
Illness and disability are part of the whole being human thing, aren’t they? You know, always occurring in the entirely normal range of human existence albeit, and thankfully, always affecting only a minority of us at any one time.
Until we suss out the secrets of immortality/eugenics – not looking too likely right now – one or the other, maybe both, will get us all in the end. Totally unavoidable really – like taxes – and in no way avoided by being complete bastards to those currently classified as the totally normal dis/ill minority.
Logically, you’d think we’d all be sanguine about the fact of this being so and, hence, react rationally and reasonably with those affected, in the absolute understanding that one day it will be us and ours who need the help. But when was life ever logical?
The reality is that many of us – minority normals – do not find tolerance, understanding and helping to be the default response toward us.
Instead, we are subject to a strong element of absolute rejection by some, possibly even those we consider friends, as well as, for some, family members and complete strangers. And, worse, our Government and State services often appear to consider us a ‘bother’ and ‘too expensive’ to support above a basic subsistence level.
If you find this surprising, read Amanda Cable’s article. It describes her experiences with her sons who have CP, from birth to date – they are now eleven years old – taking us through her discovery process toward the realisation that life often feels more personally precious for its’ imperfection and struggles – something that is an entirely alien concept to those who haven’t – yet – been there. I quote:
… my twin sons. Charlie and Archie are full of chatter, curiosity and mischief in the way that only 11-year-old boys can be … As we left, a smartly dressed woman walked in, took one look at the boys and me, and paused to give Archie a patronising pat on the head. In a pitying tone, she said to me: ‘You poor thing. Your life won’t be worth living in a few years time.’ Her companions fell quiet, and I felt my face turn scarlet.
Charlie and Archie have cerebral palsy, a physical disability caused by a lack of oxygen to the brain at birth. Handsome, witty and bright, they rely on walking frames to get around. For that woman, the sight of me helping my sons down the steps with their frames was proof enough of a bleak future. But she, and those like her who judge the physically disabled in one glance, couldn’t be more wrong …
Charlie and Archie have taught me themselves how to react to these situations … [Archie] tells others happily about cerebral palsy, and how all it means is that his legs don’t work – his mind is just fine … Charlie and Archie continue, without a shred of self-pity, to live their lives to the full.
So let me return to the woman who walked into that restaurant last month and declared that my life soon wouldn’t be worth living.
On behalf of Jack Carroll, Holly Greenhow, Charlie, Archie and thousands more children with cerebral palsy, I would say it will be a life enriched in myriad ways she could never imagine.
I really do think that a lot of the prejudice and barriers that we – the dis/ill normals – face arise through lack of awareness, fear of difference and just ignorance as to what we might expect and be capable of. The only way to overcome that is through raising awareness, showing ourselves to be ‘normal’ people with all the same expectations and aspirations as any other ‘normal’ and reaching, reasonably, for the tolerance and accommodation that our minority needs to function as such.
Given that we can neither force everyone to a position of having our actual experience nor all be famous Olympic athletes/scientists/TV personalities, maybe sharing our words and life experiences is the ‘six degrees of separation’ route for all of us to help achieve the shifts in our society that we’d all like to see.
Please do go across and read the whole of Amanda Cable’s article: The Boden girl, my sons and a heartfelt message to a world that wrote them off …
Spread the word …