Warrington Disability Partnership

Life can leave you breathless......

I watched a film tonight. It wasn't easy to watch. "You're Not You" stars Hilary Swank at her mesmerising best and a relative newcomer, actress and sometime singer Emmy Rossum. The film is essentially about "loss". Hilary Swank plays Kate, a hugely talented musician who acquires a disability in her late thirties. Motor Neurone Disease or as it's often known in the United States, "ALS", gradually robs Kate of her ability to play the piano, of independence in a way some might see the meaning of the word, and eventually, of breath itself.

Yes it wasn't always a comfortable watch but this was also a film that somehow managed to get across a number of messages, it demands an audience for the simple yet often misunderstood message that when we look at each other it really is important to try and see the person inside, not their exterior shell. This is hardly a shattering revelation. Many have championed such understanding, tried to explain why it matters, and my thoughts here are I guess just more on the same theme. "Kate" had the resources to live with her disability in a relatively independent fashion. She railed against the way most around her, even those closest, quickly appeared to stop seeing her, but instead only saw the disability, the disease, the coping mechanisms, the routines, the care package.

Emmy Rossum as Kate's manic but thoughtful carer was young, intuitive, and not burdened by such tunnel vision. She saw Kate not ALS but handled the latter in a practical & unfussy way that kept the focus on a blossoming respect, friendship, and most of all, on the "person" not the manifestation of a particularly harsh and ultimately unbeatable disease. Kate had a life cut short by an acquired disability. It took her life, a life of amazing achievement and talent, and guts.

It will similarly take Kings and Queens, rich and poor, good and bad. The disease like many others of its type knows no discrimination. It doesn't see worthy or unworthy. It just sees people. Kate was one minute part of everything that's apparently "right" about society and the next a burden not a person. Hilary Swank portrays someone who, but for the destructive power of her disease, wants to scream "see me I'm just like you". The film left me with this feeling that actually there is more than one message in this "see me not the disease or disability" thing. It's a wider message about a society that's turning its back on just about anyone who needs, well, ANY kind of help, short or long term. There's a genuine sense of a whole swathe of people being cut adrift.

Of course this has to be an OTT assessment, doesn't it ? Showing my low key politics ? I'm not sure the thousands damaged by the destruction of the Independent Living Fund (ILF) would agree. So here's the thing.....how do you measure the way a society values people ? Forget the arguments about who will manage the economy best, devolution, Europe in or out, Immigration et al. For me it's about how we look after each other, how we treat older people, disabled individuals, those that need support and help from time to time and how we respect the opinions we all have......a romantic notion? Maybe.

But as I get older and not that much wiser I do have a heightened sense that turning your back on anyone who might impact the rate of tax you pay isn't the way to go. More than that, even if it costs, enabling some of the most severely disabled people in our society to live independently, to make their contribution in our communities.....that's the way to go and that's important because it really is about seeing the person not the impairment. Those who have experienced the need for this level of support understand why it matters. Those that don't understand are usually those who have, luckily, little experience of any significant health issue in their lives but somehow have over the last few years built a wall around their world that keeps out nasty stuff like reality and honestly believe "nothing like that can ever happen to me"....

I'm sure our society has to change its approach. I'm sure you cannot abandon a million people to foodbanks in a rich country like the UK. I'm sure it will backfire on the "I'm ok so the rest of you get lost" folk out there. But how to effect the change we need I'm honestly struggling to understand. Yet if more people watch Hilary Swank in "Your Not You" they might just get it, and start to see the person not a "type" or a "number" or a "disease" or "disability" or "benefit recipient". How good would that be.....

Cheers, Mark

About the author

Mark Wilson was a trustee on the WDP Board for five years, and a social media management lead until 1st May 2017. Mark's personal blogging website, The Blue Badge Blog, covers a wide range of disability issues, particularly accessible travel.

28th February 2016