Whose story are we telling? Reflections on Up Down Man…

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Considering a production of Myrtle Theatre’s Up Down Man, at the Tobacco Factory, Bristol, Deborah Caulfield weaves her way through a multiplicity/ intricacy of threads, unpacking a story that resonates with her own…

Photograph of Nathan Bessell as Matty in Up Down Man, he has his arms outstretched and the set is lit in black and white

Nathan Bessell and Heather Williams in Up Down Man at Salisbury Playhouse. Credit Richard Davenport

Up Down Man is a stage play with words, music, dance, humour and tears. It is the story of a mother’s anguish about what will become of her son when she dies. He has Down’s syndrome. He is not a child. He is 29 years old.

In the play, although she has died the mother is on stage throughout. She observes and listens to family conversations. She tries to join in, forgetting she’s not real. She’s on the scene, as it were, but she has no agency, no influence.

Things happen around her. Issues get discussed, conflicts get resolved, and decisions get made. Without her.

The audience sees it all. We see what she sees. We see her. We hear what she thinks and how she feels as she gazes upon her beloved boy whose life goes on. Without her.

Portraying a character’s absence in terms of benign presence is a captivating idea. Indeed, I have long cherished the fantasy that I am a quietly supportive force in my children’s lives, always non-directive, never dictating what they should do or how they should live. After all, it’s not about me.

Photo of a young man wearing a straw hat who is stepping through a door wearing a dark t-shirt with a large fox on the front of it.

Nathan Bessel stars as Matty in Up Down Man

But oh, how I fret. And interfere. My offspring are independent adults. Even so, it’s hard to mind my own business. I question their actions, challenge their choices, endlessly reminding them to take care!

Text me when you’re home. OK?

Worrying about the kids is not just pathetically clichéd. The impulse to fuss is sewn into the fabric of my being. I can no more stop worrying than rip out my heart and expect to go on breathing.

I tell my son (for the nine thousandth time) that I wish he would stop smoking. I tell my daughter her health comes first. Eat more protein!

Take care. Please take care.

They do. Or they don’t. They choose. Without me.

Recently, for no particular reason, I was overcome with grief about my own death. I realised, for the first time, what my death will actually mean for me. It will mean never seeing my children again, never again being with them, not ever. I won’t be there for them. I’ll be alone. Without them.

Please note: This is my story. Neither my son nor my daughter had any part in the telling. If you want to know what they think, you’ll have to ask them.

When I was ten years old and attending a boarding school for disabled children, my parents told their story about me to the local newspaper. Banner headlines hailed the miracle of medicine that made me walk. I read all about it and it made me feel sick.

So the next time someone (parent, teacher, author, producer, whoever) decides to do a play, a film, a TV programme, or a book that sells itself as being about the life of a disabled person, I want everything possible to be done to make sure that the disabled person is more than the object gazed upon.

Historically disabled people’s voices have been unheard, our stories untold.

You may or may not have heard that disabled people’s right to be supported to live ordinary autonomous lives is becoming a forgotten dream. Inclusion is now a luxury the country is told it can’t afford. Agency is for the few with too much to lose. Freedom is just another word.

I could go on. I should go on… I will go on.

Up Down Man played at the Tobacco Theatre, Bristol from 8-18 November 2017. For more information about Myrtle Theatre Company go to www.myrtletheatrecompany.co.uk