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Tuesday, 9 January 2018

The Overflow of the Heart by Ros Bayes

Recently I took part in a discussion in the Woman Alive book club on the subject of the books of JoJo Moyes, particularly the sequels to Me Before You. I haven’t read her books, but I watched the film of Me Before You and hated it, for reasons I explain here. These reasons are mainly to do with the way a film like this reinforces the idea that disabled lives are of less value than other people’s.

That these ideas have permeated our culture more deeply than we realise was illustrated to me over Christmas. I went to a church other than my own, where people did not know me, and two of my three daughters were with me. My middle daughter has complex multiple disabilities and is a wheelchair user. She enjoyed the service and was interested in what was going on.

As soon as the service was over, while coffee and mince pies were being served, an elderly gentleman came over, shook my hand and stated, “I do think it’s marvellous that you bring her to things like this. It must take a considerable effort.” My daughter may be a wheelchair user, but she hasn’t had her brain disconnected, nor her hearing. She was fully aware of what was being said about her, in front of her, without reference to her. I didn’t want to offend an elderly gentleman who had grown up in a less enlightened era. And anyway I was in church so I couldn’t say what immediately came to mind! So I smiled, said nothing, and made my escape as soon as possible.

Here’s a simple rule of thumb: if you ever see me out with my three daughters, all of whom are in their twenties and thirties, if you wouldn’t say something to or about one of the two who are on their hind legs, please don’t say it to or about the one in the wheelchair. It will certainly be inappropriate, discriminatory and offensive. Most importantly she is made in God’s image to exactly the same extent as you or I.  Or ask yourself, would this be offensive if I said it about someone from some other minority group, such as a different ethnic or cultural heritage?  If so, don't say it about a disabled person.

I would have left the church upset, even outraged, but for what happened next. I retreated to a quiet corner with my daughter and sat down while we had our refreshments. An older lady spotted us and made a beeline for us. She drew up a chair and sat down, so that she was at the same height as my daughter. Ignoring me in the first instance, she greeted my daughter, welcomed her to the church, and asked her if she had enjoyed the service. She shared her own name and asked my daughter hers.  My daughter, as is her wont, responded by asking what brand of hand dryer the church had (hand dryers are her big interest in life). Completely unfazed by this unexpected turn in the conversation, the lady continued to chat to her about the merits of different hand dryers, and then drew me into the conversation.

As she had with my daughter, she welcomed me to the church and hoped I had enjoyed the service. Then she explained that she had been a care home manager in a residential home for disabled young people before being diagnosed with a brain tumour which turned her into a service user, so she had seen social care from both sides. She carried on chatting equally to me and my daughter, before wishing us a happy Christmas, and going on her way. She totally redeemed for me what would have been a very upsetting experience.

So here is my wish for all of us as writers. We all know there is some language which is so offensive we instinctively avoid it. Belittling ways of describing people’s heritage, gender or sexual orientation are off-limits for every responsible writer. I want to see belittling language about disability avoided just as assiduously. Here are some of my bĂȘtes noires: Please don’t describe someone as “confined to a wheelchair” or “wheelchair bound”. I’m not confined or bound to my pesky old shoes – they liberate me to leave my house and move about freely outdoors; as does my daughter’s wheelchair. Please don’t write about someone “suffering from a disability”. While some conditions do involve a degree of pain or restriction, most disabled people have learned ways of overcoming these and are just going about their lives contentedly. Most would refute that they’re suffering – they might even be happier than you! Please, in the 21st century, avoid the word “handicapped” – it dates back to a time when the most disabled people could hope for was that you would put your hand in their cap with a donation for them. It certainly doesn’t describe the life lived by disabled people in our society today.

Above all please avoid terms like “mentally retarded”, “mentally handicapped” or “has a mental age of…”. Learning disabilities don’t come as a linear scale. They are more like a scatter graph. My daughter has never grasped something as simple as personal pronouns, and is quite likely to refer to herself as you or even he. She was in full time education until she was twenty-two, by which time she had acquired a reading age of eight and could do very simple arithmetic. And yet she can describe with great accuracy the internal workings of a hand dryer, name the composer or artist of almost any piece of music you care to play to her, and, when our worship leader at church is trying to play an unfamiliar song, she will tell her what key it’s in and then helpfully call out the chords for her. So to describe her as mentally impaired isn’t really accurate, it’s much clearer simply to say that she has a learning disability.

It’s the unguarded things we say or write instinctively that show our true attitude. Jesus said it’s out of the overflow of the heart that the mouth speaks. So let’s, as Christian writers, seek to write our disabled characters with as much dignity, variety and humanity as any of our other protagonists.

Ros Bayes has 10 published and 4 self-published books, as well as some 3 dozen magazine articles. She is the mother of 3 daughters, one of whom has multiple complex disabilities, and she currently works for Through the Roof (www.throughtheroof.org) as their Training Resources Developer, and loves getting paid to write about disability all day. You can find her blog at http://rosbunneywriting.wordpress.com and her author page at http://www.amazon.co.uk/Ros-Bayes/e/B00JLRTNVA/. Follow her on Twitter: @rosbwriting.

7 comments:

  1. Thought provoking post, Ros. I do always try to talk to someone in a wheelchair rather than at them. I guess most people are a little embarrassed and don't know what to say or do around those different than themselves. By the way, the book, 'Me before you' is much better than the film sounds. I understood the need for the hero to kill himself, at least from his perspective but like you, I certainly didn't agree with him. Never seen the film.

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  2. Yes, re the film (and I haven't read the book either but ...) films tend to support any current idea I find - so if there is a popularist lobby for 'euthenasia' or whatever we choose to call it, movie makers will slant towards it. Just as in Hollywood terms women remain second class citizens and sentimental stuff is preferred to spiritual. (All doneto maximise audiences ...) Doesn't of course make these things right, but is something we need to work to change!

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  3. My current WIP has a protagonist with physical and learning disabilities. I'm doing all I can to portray her as a warm, complex, interesting character.

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  4. I wonder if writers might ask someone, who has a similar disability to the character they are trying to portray, to read and comment on a draft? Or perhaps act in a consultative role? I have ‘used’ gay friends to do this for me when writing gay characters into my novel. And, as a side benefit, I have learned a lot and deepened our friendship.

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  5. Yes, good idea. Most I'm sure would appreciate being consulted in this way.

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  6. Thank you so much for this, Ros. I loved hearing about that lovely lady in church who had the perfect way of approaching you both. Also, I never knew the root of the phrase handicapped and found myself quite shocked. All very thought-provoking.

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