A week ago I wrote a post explaining my concerns about Me Before You, a book, and now big budget Hollywood film, that opens in cinemas tomorrow. Countless disabled people and non-disabled allies have spoken out about the stereotypical portrayal of disability and negative messages that it promotes. The book’s author, Jojo Moyes, and the film’s director and actors have defended the story, suggesting that disabled people have been “Quick to judge”, and “Don’t have ‘a full view”. Director, Thea Sharrocke told disabled critiques to, “take a breath, and not necessarily know, or think that you have the right to judge somebody else until you’ve been in their shoes.”

It’s rare that I feel compelled to address an individual publicly, but everything I do through Touretteshero’s about turning assumptions about disability into constructive conversations. I’m keen that Jojo and everyone else involved understands the concerns raised by disabled people. This could be an opportunity for an incredible conversation, but it has to start by Jojo and her colleagues listening to us rather than dismissing us, however hard this might be. Below is my open later to Jojo Moyes:

Dear Jojo,

The last week must’ve been full of intense emotions for you. As a writer myself I can guess at something of the conflict you must’ve been experiencing between your joy at seeing your work on screen, and your distress at the way the Press and disability community have reacted to it.

I’m writing an open letter to you because I want you to understand why disabled people have reacted in this way, and to give you the opportunity to answer some of the questions your book raises. I totally appreciate how challenging it must be to be faced with angry criticism of the work you and many others have laboured over. But this doesn’t mean that this criticism is invalid or unworthy of response.

I’m a disabled artist, writer and performer. I’ve used a wheelchair for the last five years and in order to live an independent, safe and active life I’m supported twenty-four hours a day by a team of personal assistants. I have very real experience of declining mobility and of increasing need for support. My body works very differently from how it did a decade ago. But I’m happier, more confident, and more independent now than I’ve ever been. Currently I’m touring North America with my stage show Backstage In Biscuit Land.

Over the last few days I’ve made time to read ‘Me Before You’ so that I can write to you from an informed perspective, and so that my views are less easily dismissed with statements like those of lead actress Emilia Clarke, “When they haven’t seen it, you sort of can’t have a full view of what it is we’re trying to say.”

Here are the key questions I’d really like you to address:

• Within the book Will identifies disabling barriers caused by other people’s attitudes towards him as a disabled person. His solution to these is to end his life. Would it be acceptable for the female protagonist to decide that suicide was her only possible response to the barriers created by sexism in our society? If Me Before You were about the impact of gender or racial discrimination rather than about disability would this still be a matter of ‘personal choice’?

• You’ve discussed your own experience as a parent of a Deaf child saying, “We adapted very quickly.” This instinct to adapt to changing circumstances is one that I, and I imagine many other disabled people, can relate to. But there was no such adaptation in the book. Instead of an authentically human depiction of impairment, Will’s character exhibited a collection of clichés about disability – ‘No more sex’ or ‘If you’re stuck in one of these (a wheelchair), all you have are the places in your memory’ – clichés that were frequently reinforced by many of the other characters. What steps did you take to ensure authenticity of voice?

• I define myself as a disabled person within the context of the Social Model of Disability. This is the concept that underpins equality legislation in the UK. The Social Model recognises that individuals are disabled not by their impairments but by society’s failure to consider difference in how environments, structures or systems are set up. Why did you choose not to reflect the Social Model in your book?

• My body is not what disables me, but a lack of support definitely can. At a time when disabled people are being impacted by widespread cuts to support services, and our National Health Service is under extreme pressure, why did you choose to omit the politics of disability from your story?

• 18% of the UK population identify as disabled, but figures from the Creative Diversity Network show that disabled people make up just 2.5% of those who appear on our TV screens. Do you feel it’s important that diversity is reflected in print, on stage and on screen? If so how is ‘Me Before You’ contributing to this? You’ve said in response to other disabled people’s criticisms that you “See the story differently.” Can you explain in what way your perception makes what you write different from the majority of other material that reinforces negative narratives about disability?

• What consideration did you give to the impact of your story on newly-disabled people? We join Will less than two years after his accident, and the young man who you say inspired the story took his life just fifteen months after his injury. Adjusting to life as a disabled person takes time, physically, practically, and emotionally. For example it took me three years as a wheelchair user to get a chair that fully met my needs and enabled me to be as active and independent as I am now. You say Will’s story is one of ‘personal choice’, but without reference to professional or peer intervention, all the book depicts is a failure to provide the right support to live. What message do you think this sends to young or newly disabled people about what they should expect for their own lives?

• Finally, over the last week a great many words have been written about your work, many of these by disabled people. Simply saying we’ve misunderstood or shouldn’t judge isn’t good enough. You chose to write a story about disability and assisted suicide, and you will have gained substantial income from this story. It’s only fair that you engage with the issues and criticism put forward by people whose life experiences your work draws on. Would you consider an open conversation with some of the disabled people who have challenged the ideas in Me Before You? I’d be very happy to meet with you to discuss these issues in person and I’m sure there are many other disabled people who would make the same offer.

I’m interested in a world in which the lives of disabled and non-disabled people are valued equally, and I hope that you are too. I hope you will take the opportunity to demonstrate this by engaging with disabled people about the important questions your book and screenplay have raised. To dismiss our concerns as you have done sends the opposite message and shuts down opportunities for a better understanding of disability and a better representation of it in our cultural life.

Yours sincerely

Touretteshero