In the words of the bold, forthright, witty, Crip activist Stella Young:

“We’ve been sold a lie that disability is a bad thing… and to live with disability makes you exceptional, it’s not a bad thing and it doesn’t make you exceptional.”

Negative narratives around disability feed entrenched stereotypes and dominate our cultural landscape. And they’re dangerous and damaging to disabled and non-disabled people alike.

Sadly the film and television industry’s responsible for a lot of this. I’ve written before about the damaging practice of  non-disabled actors taking disabled roles – and the stereotyped representations of disability that emerge as a result. I loved the BBC drama Undercover, but the casting of a non-learning-disabled actor in a learning-disabled role brought an avoidably inauthentic note to every episode.

Last night another film peddling tired-out narratives, written and acted by non-disabled people, premiered in New York. First, a caveat: I haven’t seen or read: ‘Me Before You’ so I’m in the same position as @LoftusCharlotte on twitter when she wrote:

Obviously I can’t write a detailed critique of the plot, so I’ll leave that to the @crippledscholar, Kim Sauder, who seems to pinpoint the issues perfectly here, and you can watch the trailer on YouTube.

I’m going to tackle some of the broader issues that demonstrate why representation without lived experience is problematic.

Who’s Normal?
In a piece in the Guardian the film’s director Thea Sharrock is quoted as saying: “If we had shown Will being taken in and out of his chair, or put in a hoist over a bath, the impression we would give is of difficulty. I wanted to make it more normal.”

This encapsulates one of the central problems – whose ‘normal’ does she mean? Wheelchair transfers are part of my ‘normal’ and that of millions of other people. And bath lifts create no more difficulty than my printer or washing machine – they’re occasionally frustrating but mostly very useful. The quote reveals how the film represents disability as imagined by non-disabled people for non-disabled people (and an Oscar). Here the measure of ‘normal’ is defined by non-disabled people’s experiences, which means I’m tacitly excluded from the target (normal) audience.

Disability Isn’t Synonymous with Sadness
In the same article the core plot is described as: “What might make life worth living if you are confined to a wheelchair?” As a wheelchair user I find this assumption-laden public discussion about my experience deeply frustrating. Where’s the film that asks: “What might make our society inclusive and responsive to all?”

My life isn’t miserable! In fact at the moment it’s quite glamorous – I’m writing this from an amazing hotel in Toronto where I’m on tour with Backstage In Biscuit Land. I’ve got a strong network of disabled and non-disabled friends, and disability culture, with the vibrant art scene that stems from it, enriches my life immensely. Yes, I face many disabling barriers, but these are caused by the way society is organised, not by my unusual neurology and wobbly legs.

The Absence of Policy and Politics
I can hear the sceptics shouting: ‘But you can’t speak for all disabled people’ or ‘Some disabled people would rather be dead than disabled’ or ‘Not all disabled people have a good quality of life.’

Of course I can’t speak for all disabled people! But I can speak with knowledge from my lived experience and I can echo the conversations and concerns of the Crip community, something neither the writer, director or lead actors of this film can do. For the record, hanging out at a hospital, an SEN school, or a support group for a week, doesn’t qualify as ‘lived experience’ or provide you with a ‘disabled identity’.

While it’s true that some disabled people advocate for assisted suicide, a great many campaign passionately against it. In my experience, a poor quality of life often goes hand-in-hand with inadequate support. This is particularly relevant at a time when the structures that enable disabled people to live independent lives are being ruthlessly destroyed.

There’s No Excuse for Non Authentic Casting
It’s not good enough to say, “We auditioned disabled actors but there were “limited options” or “there was no-one high-profile enough to meet what the studio required.” If disabled actors aren’t invested in or given opportunities to showcase their talents and get their big break, then of course they’ll never be ‘high profile’ enough. And if young disabled people don’t see themselves represented believably on screen they’re not likely to think acting’s a possibility for them.

People say, “It’s acting you’re talking about and acting’s all about becoming someone else”, but watching someone mimic an impairment they don’t have makes me cringe every time I stumble across it. People who praise the portrayal of a disabled person as ‘impressive’ or ‘convincing’ should ask themselves whether what they’re actually applauding is the reinforcement of their own assumptions.

I’m far from a lone voice on this issue. Last night many disabled people took to Twitter to inject some real Crip voices into the discussion. From Baronesses to musicians, here are just a few:

If you think disability isn’t an issue that concerns you, you should read what the Director General of the World Health Organisation, Dr Margaret Chan, said in 2011, “Almost every one of us will be permanently or temporarily disabled at some point in life. We must do more to break the barriers which segregate people with disabilities, in many cases forcing them to the margins of society.” Changing attitudes and deepening conversations is a good place to start.

It’s crucial that disabled people are visible in our cultural institutions, our communities, and on our screens. The stereotypical imaginings of non-disabled ‘creatives’ don’t count.

Negative perceptions and the barriers they create have the potential to be far more disabling than the impact of any impairment. It’s time to shatter the disability illusion. Let’s get real, get demanding, and get better at how we understand and discuss disability.