Lives worth living: Philosophy, sensory stories, and a more inclusive world

Portrait Jo GraceJo Grace (nee. Thomas) (BA Philosophy, 2000) is an international consultant, trainer and author of Sensory Stories for Children and Teens which is used in special schools, with adults in care settings and students in mainstream schools, colleges and universities. Her stories are also used in the heritage sector, with Kensington Palace and the London Transport Museum using her sensory tours to create more inclusive environments. Jo founded The Sensory Project, which creates resources and provides training to support inclusion through sensory means. Her work focuses on people with profound and multiple learning disabilities, (PMLD) who are often considered to be the ‘most disabled’ members of our society.

“Philosophy?” It’s something all undergraduates studying philosophy hear: “What job are you going to do with that?” Actually, philosophy graduates are very employable creatures, with recent national statistics showing that 87% of students are in graduate level jobs or further study within 6 months of graduation. But that doesn’t answer the question: what jobs do philosophy graduates do?

Well, according to the UK’s leading student careers website, many go into the NHS, the Civil Service, advertising and PR, banking, publishing, charities and recruitment. There are the more obviously philosophical jobs, for example sitting on hospital ethics committees. But knowing where you are heading whilst you are studying is hard. I could not have answered you while I was studying. Yet I do a job where what I learned in my philosophy degree permeates every day.

This is because I did a degree that asked me to question what it is to be human, what constitutes personhood, a degree that made me reflect on the essence of things, and on what things truly mean.

star whiteNow I run the Sensory Project which creates resources and provides training for people looking to engage with individuals with profound and multiple learning disabilities, (PMLD).

It was not so long ago that people with PMLD suffered conventional treatment that deeply undermined their humanity and their personhood. Not so long ago they would have been separated at birth from their parents to be brought up in institutions. Not so long ago they would not have been allowed to live at all.

Today we live in a more inclusive world. People with learning disabilities, physical disabilities and mental health difficulties now participate in our communities. But people with PMLD still predominantly lead hidden lives. Not because they are being hidden away, but because the nature of their health care needs means that the average person does not bump into them in the course of their week. Simple things like the lack of toilets suitable to their needs make days out difficult, just as it would be difficult for anyone to spend a day at a shopping centre or a park deprived of toilet facilities.

Philosophy overlaps into my work as I can ask and answer the questions that come with this role. Individuals with PMLD are now recognised in the research as fully human and their voices are beginning to be heard. But from time to time, from well-meaning people, I am asked whether I think their lives are worth living. Philosophy taught me how to react calmly, rather than just yelling YES! It taught me how to discuss what that person thinks makes a life worth living, what they value in life, what life is truly about. This helps to get the message across in a way that – I hope – sinks in.

I’ve used a derivative of the word once already in this article: inclusion. Lately I have been working on a speech for an upcoming conference about the meaning of this word and how what we base its meaning on effects how it is carried out. Traditionally inclusion has been seen as an act of charity, which at its essence is based on pity. I want the word to change and to become one not based on pity but on respect and understanding. Viewed in this way we can act on inclusion out of self interest, and understand that including people who are different is not only best for them but best for everyone. I will give you an example.

Book cover - Sensory StoriesIn today’s society we are experiencing a rise in anxiety related disorders. Mindfulness has been shown, in part to be an answer to this problem. Oxford University published a study into secular mindfulness which showed mindfulness to be preventative of stress, depression and anxiety. Mindfulness is the practice of focusing on the moment. Individuals with PMLD live their lives in the moment. They are experts at deriving joy from the here and now. They may be less able physically but they are more able mindfully. By living together we can share in each other’s strengths. We have a society that has a problem with anxiety, and a group of people excluded from that society who are natural experts at the solution to that problem. You can see the logic.

The mindfulness example came about from a recent project: The Structured Sensory Art Project which enabled individuals with PMLD to independently create works of art (once again I entered ripe philosophical territory as I discussed with other practitioners and artists ‘what is art?’) Initially the project used mindfulness to get facilitators to focus on the time in the studio so that they could truly be with the artist they were supporting and not be distracted by the logistics of care. It was only as the project ran that I realised that the artists were brilliant at living mindfully.

touch experiencesEnough with the philosophy, you may be thinking. What is it you actually do? Well aside from the time spent at my computer crafting conference presentations, training days, resources or articles like this one I can be found exploring my senses and trying to come up with new and ever more curious sensory experiences. I’m the woman in the supermarket who is running all the washing up brushes over the back of her hand frowning, I’m reading the backs of the laundry gel packets to find the one with just the right ingredients for making slime, I’m holding things up to the light, sniffing them, and just generally having fun. It’s a ‘pinch myself am I dreaming’ job.Without the meaning behind what I do, seeking sensory experiences in the everyday would just be so much silliness. With an understanding of its meaning and significance it becomes something profound, and I absolutely love it.

©Jo Grace, (BA Philosophy, 2000)

Read more about The Sensory Project

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Uninhibited  is an exhibition of the artworks produced by the artists of the Structured Sensory Art Project is currently finishing its tour of the UK at the Exeter Phoenix centre where it is hung in their Walkway Gallery

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