Is it OK for Hallowe’en to be a spooky-faced event?

It was great to see Mind win an apology and donation from Asda and maybe Tesco after they complained about a ‘Mental Patient Fancy Dress Costume’ presumably intended for wearing at Hallowe’en but maybe at any time… http://www.bbc.co.uk/news/uk-24278768.

It seems to me important that the two offending items of clothing were both branded heavily in such a way that they deliberately pointed at and stigmatised people with mental health problems. As Paul Farmer, CEO of Mind rightly says, that goes way beyond the boundaries of acceptability.

That is very different from most of the ghoulish and scary face masks that are sold in the annual mini retail boom around Hallowe’en – none of them are branded as ‘let’s pick on people with scars, eye patches and asymmetry’. They don’t need to. Everyone accepts – unwittingly perhaps? – that this is the time of year when children dress up to scare the wits out of others… and if the face masks are extreme, they simply reflect the idea that skulls and skeletons are ghostly and scary.

Is this OK?

Every year, Changing Faces has a problem with Hallowe’en. We debate it but always end up concluding that whilst it is tiresome to have facial disfigurement associated with evil (again), we don’t want to be kill-joys – and actually some children with disfigurements find the whole event rather fun too, able to indulge themselves behind a mask without worrying.

Maybe we should stick to this line. What do you think?

Maybe there’s a role for social media in this? I rather liked the riposte that Mind planned: tweet your real face to Asda and Tesco… http://bit.ly/19LGJnH

Perhaps we should look around for particularly unpleasant masks and let the manufacturer and retailer know what it’s like to live with a real face with scars etc?

Please let me know where you stand… Thank you.

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A guide to ‘disability liberation’

Review of Why are you pretending to be normal?

By Phil Friend and David Rees

I can think of no other book, film or guidebook that does what this does: it brilliantly allows the reader to examine, clarify and understand the process of what might be called ‘disability liberation’. Through the sometimes confused thought processes of one person challenged by an impairment, we follow “Chris” as he is very gently conducted through his own liberation struggle and we are taken through the labyrinth of cognitive and behavioural changes that he needs to make.

It is a guide through a profound journey which many people with disabilities will wish they could have had much earlier in their own lives. It is a journey full of resistance (“but you surely can’t expect me to think like that?) and counter-cultural insights (“disability sometimes forces us to go public about things we would rather keep private”) but, under the safe guidance of a mentor, it is successfully accomplished: “I [feel] incredibly upbeat and positive.”

It is a deceptively straightforward read but I found myself needing new insights when I went back to re-read on many occasions. I was reminded how much my own liberation journey back in the early 70s had stemmed from reading outsider, feminist and human rights literature. I devoured Lawrence, Hesse, Greer, Millett, Lessing, Marcuse, Friere and many others searching for a map and directions to break out of the straitjacket of my conditioning.

Phil Friend and Dave Rees have done a huge service for many people with impairments and their families and those who seek to support them: liberation journeys now have a travel guide! But, if this book can become known and acknowledged in opinion-forming circles, it could influence the very culture in which disabled people all too often struggle to get respect and acknowledgement – which makes their own liberation so vital because without it, they are liable to be powerless and unacknowledged.

So get the book, read it and spread it around widely!

“Why are you pretending to be normal?” available from www.philandfriends.co.uk/book or from Amazon – Paperback/Kindle versions http://www.amazon.co.uk/Why-are-pretending-normal-ebook/dp/B00DPKDXYM  

A face from the flames: saluting Niki Lauda

1st August 1976. A date to remember. Niki Lauda crashes – the world stops.

It stopped me in my tracks too and forced me to think back. I had handed in my MSc thesis the day before after much toil and was set on a month’s holiday before starting a first highly unexpected job. Instead, it was four tough weeks reliving my accident and its aftermath through the news of Niki Lauda.

I sat with my parents that evening and we went back over the night when I had been in a car fire too – not going at anything like the speed of Niki Lauda but like him, failing to get around a corner – in my case, outside Usk in Wales. They had dropped everything and sped to my bedside. 40% burns. Severe facial burns. Just turned 18. Life in the balance. Survival was everything but even if I did survive, what future would I have with a face so traumatised?

Would Lauda pull through? Surely his motor-racing days would be over? Would his meaningful life be over with a ruined face? I desperately hoped not because he could become a new international role model who would tell the world that facial burns and disfigurement do not spell the end of meaningful life.

Over the next month I watched with increasing admiration as Niki fought a very public battle to get himself healed and fit enough to compete again – and I loved the reports that he was doing so against his doctors’ orders! I too had gone against some medical advice by going up to University just 9 months after my accident – “surely it would be better to have some more surgery to get you looking better?” No way.

And I also shared in what must have been his immense frustration that he had to withdraw from the crucial Japanese Grand Prix because of the pouring rain. His badly burned eyes and lost tear ducts prevented him getting enough clear vision. I knew what he was going through – my eyesight had been damaged in exactly the same way.

But it did not matter that he did not win the Championship that year. He had proved beyond all doubt to a massive worldwide audience that, if you survive, facial burns are not a barrier to living life to the full. I rejoiced! I saw far too few role models. By then I had started my first real job, something which gave me a tiny inkling that I too could make something of my life…

I was often asked in those days – and have been many times since – about the horrendous pain that Niki (and I) must have gone through. How on earth did we bear it? What my five years of pain and surgery taught me was that resilience was not innate. It had to be learned. The pain that floored me in the first days and weeks after my accident became something that I soon discovered I had to mentally withstand because not to do so would consign me to deep sedation and powerlessness.

I became what I can only describe as bloody-minded. ‘Focused’ as the modern idiom has it! Which doesn’t mean that I did not flinch at the pain of the wounds, the operations and the dressing changes. But I told myself to bloody well hold fast. And the more I did so, the stronger I felt. Niki Lauda epitomised bloody-mindedness. I met him 10 years ago and he still did – and by all accounts, still does!

So I look forward to seeing ‘Rush’. Not the accident itself, of course, but to witness Niki’s refusal to buckle and his determination to buck the assumptions he must have had about his face – and everyone else had too. Niki: you are a true champion for face equality.