I’ve tried really hard to not write this post. I’d planned originally to do it in time for the Oscars last weekend but I was laid low with a cold and didn’t have the energy or focus it would’ve needed. When I was better I told myself I’d missed the boat, that I was very busy, and that it’d take a lot of time and thought to get right – so I gave myself permission to forget about it.

But I haven’t forgotten about it, and it’s a clearly a post that’s determined to be written, so here it is, late but definitely still relevant. It’s about non-disabled actors playing disabled roles  – and more broadly about the portrayal of disability on stage and screen and the lack of voices and experiences that ring true. It’s something that’s been niggling away in my mind for weeks.

I’m going to start with a few caveats and facts.

Firstly there is obviously no universal experience of disability. Different people are affected in a multitude of different ways, and for us all there are times of pain and sadness and even tragedy. I’m not suggesting for a second that there aren’t major challenges to being disabled, but I know there’s a whole lot more besides. But you’d never know this from the way disability is portrayed in mainstream drama and documentary.

Secondly disability isn’t ‘niche’ – about 18% of the UK population identifies as being disabled. But that’s not the percentage we see on stage and screen – figures suggest that disabled people make up under 2% of those on TV.

Thirdly, I use the ‘social model’ definition of disability, where disability is seen as being caused by a failure to consider difference in the way society is organised – for example it’s steps (without ramps) that mean I’m disabled, not my wobbly legs or my wheelchair.

Finally, disability takes many forms – it can, for instance, be the result of physical impairments, mental health conditions or learning difficulties.

So having got all that out of the way – let’s talk about Eddie!

I mean of course Eddie Redmayne who won an Oscar this year for his portrayal of Professor Stephen Hawking in the much-lauded Theory of Everything. I watched the film on the plane to Canada and I thought it offered a fairly flat portrayal of disability. What I felt about it was pretty well summed up in this review.

While 16% of Oscar winners have won their prize for portraying a disabled person (Eddie now being one of them) as far as I’m aware none of them have identified as being disabled themselves. And I can’t think of a single disabled actor who’s ever won an Oscar for playing a non-disabled character! I also worry about who’s judging the quality of these portrayals – I’d be interested to know how many of the 5,783 Academy Award judges identify as disabled.

Why does this matter? After all, acting’s about pretending to be someone else, so what’s wrong with actors twisting their arms or body, slurring their speech, or desperately grabbing at their own hair?

This is why:

• Simple imitation of impairments doesn’t reflect what it means to be disabled
• Disabled people face frequent discrimination, often as a direct result of assumptions about what it means to be disabled. Stereotyped characterisations reinforce these ideas
• Disabled people are seriously underrepresented on stage, screen and behind the scenes – often invisible in our cultural landscape. This inequality is not rectified by non authentic casting
• As long as narratives relating to disability are written, created and performed by non-disabled people they’re at risk of rehashing boring clichés about what disability actually means
• Disabled actors and performers aren’t being invested in, whether in terms of roles, training, or accolades
• Our cultural spaces are frequently inaccessible – you’d be surprised by the number of auditoriums I can get into, but whose stages I can’t. This won’t change while there’s no demand for it to be any different
• Disabled people make up part of any audience and they’re being short-changed by a failure to reflect diverse experiences.

Clichéd representations of disability are damaging. And those most at risk are non-disabled people, or as my friend Eliza described them during a recent podcast, the ‘temporarily non-disabled’. Anyone’s life can be touched by disability at any time and if you’ve thought about what it really means to be disabled, it can make a big difference to how you feel about, and manage, your changing mind, body or circumstances.

It’s not only Eddie who’s been on my mind this week. A couple of days ago I read Dea Birkett’s piece on a play called ‘Kill Me Now’ by Brad Fraser, currently on at the Park Theatre in Finsbury Park. As the parent of a disabled child, Dea’s critique of the play – which is about the impact of disability within a family – is very telling and I totally understood her objections to stereotyped portrayals written and performed by non-disabled people. Dea’s daughter, disabled actor, Storme Toolis, wrote: “It’s not an equal playing field. Why do they get to portray difference if I can’t? We are not ‘sexually frustrated retards’, we are actors.”

Kill Me Now is being widely acclaimed in a similar way to The Theory of Everything but not by disabled people. It seems that what’s being celebrated is a view of disability that non-disabled people expect to see.

Looking at me through the blinkered perspective we’re so frequently presented with, you’d see someone who’s lost the ability to walk, is totally dependent on other people for even basic needs, whose unpredictable condition places her at serious risk several times a day, who’s never alone, never still, never quiet – a person whose life has changed beyond recognition in the six years since my tics increased significantly.

The contrary, positive, view from my own perspective is that I live in an amazing home, do a job I love, go wherever I want to go, spend every day with amazing people, am rarely lonely, and live a life bursting with activity, laughter and incredible opportunities. My life looks very different from the way it was six years ago and I’m much happier for it.

I don’t feel this because I have an exceptionally positive attitude, or because I’m ‘brave’. It’s because I have the support I need, I’m comfortable with who I am, and like other people, I’m getting on with living my life in the best way I can. If, when my tics first intensified, I’d only ever been exposed to the traditional view of disability my journey would’ve been much tougher and my expectations much lower, and I doubt if I’d have fared anywhere near so well.

So, back to Eddie. One of the main arguments I’ve heard for casting a non-disabled person as Professor Hawking is because the role needed to show the Professor’s condition as it deteriorated. The presumption is that it would’ve been impossible to find a disabled actor who could’ve played all the stages of his life.

The problem with this argument is that it perceives disability as being about just the impairment – the bit that’s not working. I don’t see it that way. My identity as a disabled person is not just about my tics. Casting disabled actors shouldn’t be about playing impairment-snap. An actor who has lived experience of disability is in my view likely to bring more to a role than the simple emulation of physical symptoms, and consequently would give a richer performance. Everything I’ve read about Eddie and the interviews with him I’ve watched (which is now quite a lot) indicates he’s got no lived experience of disability.

Of course acting talent and the ability to undertake the role is crucial. But there are many talented disabled actors who are not getting the opportunities to prove themselves.

Stephen Hawking has endorsed Eddie’s depiction and it’s great that he’s happy with how he’s been represented. But that’s no reason to stop us discussing this important subject because increased visibility of difference is crucial to building more inclusive communities.

Disabled people shouldn’t be cast only in disabled roles. Disabled actors are also mothers, sisters, sons, teachers, explorers, criminals, market traders – and physicists. Just because disability isn’t mentioned within a character profile doesn’t mean the character has to be non-disabled.

There are of course some great examples of disabled actors playing high profile parts in mainstream dramas where disability isn’t central to the plot, like RJ Mitte in Breaking Bad or Liz Carr in Silent Witness. Last weekend a character with Tourettes featured in Casualty, brilliantly played by actress Ellen Coulton who has Tourettes.

My issue with non authentic casting isn’t so much about the principle of non-disabled actors playing disabled roles. It’s more about the stereotyped representations of disability they often portray. Negative perceptions and the barriers they create have the potential to be far more disabling than the impact of any impairment itself.

When the portrayal of a disabled person is praised, or wins an Oscar, we need to check in with ourselves about whether what we’re celebrating is a genuinely exceptional performance, or whether we’re simply recognising and rewarding the clichés we expect.