Columnists, learning disability, special needs

Ambitious and inclusive sensory story-telling

About a decade ago an impossible dream of mine came true. Special Needs Jungle was a part of that happening, but where that dream began is hard to pin point.

Inclusion in the blood

If I was asked to point to a place in time where my interest in inclusion began I would have to point to a time before my birth. To my Grandmother who was in her day an early inclusionist, and to my mother who throughout my childhood constantly gave me the opportunity to play alongside children who were different to me. Retrospectively I can see that the girl I knew as “Ladybird Emma,” with whom you looked for ladybirds and talked about ladybirds, probably had a diagnosis of autism. And the children who, in my child’s eye memory, lived in beanbags making gurgles not words, had profound and multiple learning disabilities. At the time I knew them all without their labels, we were all equals, and remain so now I have terms to describe them.

When I was two years old, my Grandfather became a paraplegic. My family, like so many others, got used to all the equipment, we rebuilt rooms to accommodate the hospital bed, we dealt with bags full of wee, we had the tubes, the things that go ping and the medications, and all the rest of the paraphernalia that comes with a serious physical disability. 

As a teenager, I supported a brain-injured man to get out into the local community. When I got married the first time around, my husband and I qualified as foster carers so that we could look after a bewitchingly vibrant child with an array of labels to her name. Professionally, I have worked as a teacher in a special school for students with severe and profound special educational needs and disabilities.

Discovering sensory stories

It was during my time as a teacher that I first encountered sensory stories. They impacted my professional practice in a Damascene way, within the space of a term all of my lessons were sensory stories. Cookery, swimming, science, religious education, you name it I had a sensory story for it!

We had at school a few pre-resourced stories that from time to time I would use, they were great as a grab and go option but I could never connect with the storylines so I felt my telling of them lacked lustre. Years later, I met the author of those stories who explained to me that they had been written for particular people and described aspects of their lives making them wonderfully relevant for them and slightly out of kilter for everyone else.

Wouldn’t it be great I mused, if we had sensory stories on all sorts of different topics. And wouldn’t it be good if they were the same sort of price as a typical children’s book. And finally, wouldn’t it be fantastic if through the course of the story stimulation was offered to a wide range of senses. (The particular stories we had in school had no tastes or smells in them and one of my learners was deaf-blind, meaning the stories for her were simply a succession of things to touch). 

The Sensory Story Project

This would be a very neat story if my next sentence was, “so I set up The Sensory Story Project,” but that is not what happened. What happened is that I talked about my ambitions for sensory stories for over eleven years without doing anything about them. Finally one of my friends called me on my claims.

Kickstarter, a crowdfunding website, had launched in the UK and they told me I should Kickstart to write the stories they were now fed up of hearing me go on about. Kickstarter is for creative projects, NOT charities, and NOT causes. Getting permission from them to launch the stories on their site was complicated, saying that the stories were for people with complex disabilities made them think I was a charity or a cause, and persuading them that there could be a story without there being a physical book was another challenge.

But eventually, I got the go-ahead. I had 42 days to raise the funds I needed to be able to write five sensory stories. Special Needs Jungle posted a story about me to help me find backers.

Only 16% of Kickstarter projects reach their funding goal and get to go ahead so this really was a pie in the sky dream. I worked 15 hours a day for 42 days and miraculously, 129 people came out of the ether and backed my dream, including several heroes of mine. I got the go ahead! I was free to write the stories I had planned to write for over a decade…

I instantly got cold feet, what if all my bright ideas and good intentions were misguided? I am very much human, fallible, often wrong, who was I to say what would make a good story?

Creating the stories

I used the funds from Kickstarter, combined with a plentiful supply of marmite and beans on toast, to take six months out of work and study. I read every piece of research I could lay my hands on into storytelling and the sensory world. 

I wrote about the formation of stars in stella nurseries. I wrote an allegory for Victorian suffrage.  I wrote a fantasy told in Haiku about a boy who dives into a puddle on the pavement to have adventures at sea, before returning to the woman waiting at the edge of the puddle. As with many of my stories, this one can be read in two ways; is the waiting woman a lover or a mother? It is up to the people sharing the story to decide. Selling the original stories funds the writing of more and I have since added stories in which people get a tattoo, explore the world of Minecraft, face the death of a loved one, and explore different countries.

I believe people with complex disabilities should have as wide a range of access to literature as people without disabilities, I think of all the categories of books I can find in my local library and imagine a similar expanse of sensory stories to choose from. 

Were I to recommend you a sensory story, I might point to one from The Sensory Story Project library. I might point to one from one of our new guest authors at The Sensory Projects. I might point to the extensive Bag Books library. I might point to the anarchic narratives told by Pete Wells, or I might refer you to Nicola Grove’s work, or to Keith Park!

But were you to ask me what the best story would be for a particular person, I would recommend one like the first sensory stories I encountered, the ones I considered lacklustre. I would recommend a story written specifically for that person, by someone who knows them well, about something they can both the sharer and the receiver of the story can become fully invested in. Do not place any limits on your narrative; within stories, you have total freedom. The story-sharing space is a marvellous landscape to explore and it is open to everyone regardless of ability, disability or neurodivergence. Adventure!

References

  • Grace (2017) Co-authoring sensory stories with individuals with PMLD. PMLD Link.
  • Grace (2019) Sensory stories - self-expression through sensory experience. SEN Leader.

Resources and links

Read more about Jo Grace here

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