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Hula-hooping with Joanna Grace!

I catch up with the fabulous Joanna Grace and find out where the journey began, her PhD studies, the new book plus Joanna shares her top five multisensory story props!

Tell me about yourself:

Oh, be careful, I’ll have written you a book before you’ve had time to blink! The first thing I usually tell people is that I grew up on a boat: a concrete boat that my parents built by hand after meeting at university. They had me and we set sail. So, when people ask me where I come from, I secretly want to tell them I am a mermaid.

What was the first job you had?

I worked informally as a support worker for a brain injured man who was a family friend when I was 13, and I also had a job as a swimming teacher, and then a little later on as a potato harvester!

How and why did you choose a career in special education?

I’m not sure I did choose it. I think throughout life I’ve tried to do more of what I’m good at and less of what I am bad at, and it chose me in a way.

My childhood was one of improvised play, toys made out of cardboard boxes and sellotape, imaginary adventures. When I chose my A levels and my Degree, I chose the subjects I most enjoyed (Art, maths, more maths and psychology, and then a degree in Philosophy). These things might seem unconnected but the creativity of my childhood combined with the understanding gained through studying psychology and all the big important questions you have to consider as a philosophy undergraduate, such as what makes life worth living, and what constitutes a human, personhood, all fit really well with a career in which you have to creatively support people who live through very complex disabilities, and make choices about what is worth doing, what is important, what makes life worthwhile. I’m still studying. I graduated with a masters in Special Education as I set up The Sensory Projects, and I’m currently studying for a PhD.

What sparked your interest in writing multisensory stories?

Sensory stories came into my life as something of a halleluiah moment. I was struggling to provide meaningful activities for a class of children with very diverse needs, including two children with profound and multiple learning disabilities and the teacher in the room next door to mine asked me if I had ever tried a sensory story. And suddenly there they were, the answer to all my problems, I wrote so many that year, everything I did with that class was through a sensory story. And being a bit of a geek, I was soon exploring them more, finding out about the magic of storytelling and figuring out how to facilitate all those benefits for the most complexly disabled of learners. In essence, in that moment, I became Sensory Stories number one fan, and I remain as enamored with them now as I was then.

Do you have a favourite multisensory story?

The question is like asking me if I have a favourite child, even if I have an answer, I shouldn’t tell you! I do love to tell my sensory story. 'The Birth of a Star' at conferences, but that could just be because it is so much fun shooting people with a confetti cannon. I think if I had to choose one, I would choose 'You Me and the Stars', which is the last story in the second edition of the 'Sensory Stories to Support Additional Needs: Making Narratives Accessible Through the Senses' book.

Sensory stories have been around for a while, they’re an art form, creating those short narratives is a bit like haiku and then the hunt for the perfect experience to go with each line is like being a folley artist (a job I think I would enjoy). With any art form you would in time expect its consumers to become its creators, but with sensory stories where their consumers are often people with profound intellectual disabilities there was not that same expectation that they would become creators. I worked with The Sensory Trust on a project that evolved over a few years, and we figured out a way of facilitating co-authorings, where groups of people with profound and multiple learning disabilities come together to create a story collectively. To be clear, they create the story, I am part of creating the environment in which that happens, but I am not an author of the story with them. The story 'You Me and the Stars' was created by around sixty people with profound and multiple learning disabilities who all attend the National Star college, witnessing its creation was just one of the most magical days of my life, easily topping a list of the best days ever. Being in that space as the story emerged from the interactions of those students was like being awake inside the most beautiful dream. That day ended (not to spoil the story for those who will get to read it) in a cascade of golden stars, made from little bits of shiny paper. As we left the room it happened in, I noticed people who had also witnessed what had happened stooping to pick the stars up from the floor. I did the same. I keep them inside bags, tucked inside books, at the bottom of my boxes. Every so often as I am doing something I come across one of those golden stars and remember that it was actually real, the magic we experienced on that day actually happened, and now having the story published is the icing and the cherry and all the golden stars on top of the cake.

How did The Sensory Projects begin?

Ah… this is more confession than impressive origin story. In truth what happened was that from that moment of discovering the stories I used to talk about them, fan girl style to anyone who would listen. (I am, after all, their number one fan – self-appointed). But… the stories I had, had some limitations, there were some purchased ones that were out of the budget of the families I knew, there were some we had that didn’t have a wide range of stimulus in, and there seemed to be loads for young children but not so much for people as they got older. So, I would tell my friends “They should be cheaper, they should be more richly resourced, they should be on a broader range of topics”. It was just my little performance piece, I never actually meant to do anything about it. Anyway, after more than eleven years of hearing me perform this particular rant one of my friends called me on it. Kickstarter had just launched in the UK and they put it to me that I should kickstart to create the stories I so passionately thought should be out there.

I kickstarted for the money to enable me to write 5 sensory stories. Only 16% of kickstarters get funded so I never really imagined it would happen. As I type today there are over 25 stories published on The Sensory Projects, since 2020 we’ve been publishing stories by other authors as well as myself, I’ve been commissioned to write a series of illustrated children’s books that are also sensory stories, and I’ve had practitioner manuals published and I think it is closing in on another 20 stories published by other publishers. So the Sensory Stories Project has gone so far beyond anything I dreamed of, it is quite literally for me ‘pinch myself am I dreaming’ territory, and yet that is still not it, as the stories project seeded the art project, which seeded another project and so on, such that now if you visit my website you’ll see not just one but five Sensory Projects!

Tell me more about your PhD studies.

I am studying for a PhD in Identity and Belonging with people with profound intellectual and multiple disabilities. I am funded by the ESRC via the South Coast Doctoral Training Partnership to do this and am supervised by Dr Jo Hope and Prof Melanie Nind (who as one of the originators of Intensive Interaction is a hero of mine).

To be awarded a PhD you have to demonstrate that you have made an original contribution to knowledge. I have to know, or find out, something that no one else has before. I hope to do this in two ways. I will be working with people with profound intellectual and multiple disabilities as I do the research, and I feel that this gives me an edge. Together we will be looking to understand something about identity and belonging that has not been understood before. I think often people exploring identity begin from a very intellectual place, considering concepts such as race or class. To explore identity with someone with profound intellectual and multiple disabilities I must start from somewhere else – and I’m hoping this will be a new place and so help me meet that requirement for original knowledge.

The other way I hope to reach that requirement is through the methods that I employ in my studies. If you look at the history of research in relation to people with profound disabilities it starts in a grim place. We did research ON them, in the same way that research might get done today ON lab rats. Then we did research FOR them, things would still have been tested on them, but only if they were of use to them, so for example we might have tested new medications or treatments on them, justifying this through their utility for those people. Then in the 1990s researchers became more aware of social models of disability (so medical models are the ones that say “this person is broken, the problems they have are because they are broken, we need to fix them” social models say “this person is different, the problems they have are due to a mismatch between the environment and their needs, we need to adapt”) and there was a move towards doing research WITH people with learning disabilities. This generated some brilliant new research, and there is currently a move towards research about people with learning disabilities being done BY people with learning disabilities. So, in the WITH model, people with learning disabilities help the research team in various ways such as providing their insights, helping with interviewing, testing things out and so on. In the BY model the people with learning disabilities decide what the research will be, and they commission researchers to work for them doing the research of which they are in charge. This is fantastic ground breaking stuff, but where does it leave people with profound intellectual and multiple disabilities. Essentially as FOR changed to WITH they got left out. Because whilst that WITH is brilliant it did not mean with anyone, it meant “with people who are intellectually capable of doing research”. Researchers reporting on WITH research talk about how they created training that broke research practices down into small steps such that someone with a learning disability was able to master the skills required. They talk about how it took much longer to do the study WITH someone with a learning disability, they talk about the adaptations. But at the end of the day there is a threshold, which is one of intellectual capacity and if you do not meet it then research does not get done WITH you.

So, the second way I hope to make an original contribution to knowledge is by doing research WITH people with profound intellectual and multiple disabilities. Which might sound like an impossible task, but I am working on it, and I think I’ve found a way of creating a research encounter that we enter as equals and a research output that can be meaningfully shared by people with and without cognition. I still have at least two years to go so it is a case of watch this space to see if I manage it!

Watch the video

It is my love song to sensory stories, and I hope will inspire other people to fall for them the way I did.

It also has a gorgeous cover star in the shape of Thomas from Riding on a Star, who was one of the first people to enjoy my Sensory Stories when The Sensory Project's launched.

The book contains all you need to know about why sensory stimulation is so fantastic, what it does for cognition, learning, engagement, mental health, how it can support communication and foster connection and belonging, and it explores the magic of stories. Stories are so much more than things to tell children at bedtime, they permeate our lives, found our identities, build our self-esteem, our self-worth, through stories we learn to cope with difficult things, stories can hold our hands through the most challenging of life’s experiences, and stories can be used therapeutically to help people face challenging situations, they can be used to facilitate access to experiences and so much more…. It has all of that and it has the original five sensory stories with activity plans which were in the first edition of the book, and they are joined by four more brilliant stories. As you know there is the one from Rhyming Multisensory Stories, all about getting a haircut, there’s one from Pete Wells that’s full of the mirth and mischief Pete is known for, Dr Nicola Grove added a traditional Zulu story to the mix and of course the final story of the book is 'You Me and the Stars'.

'The PMLD III conference was a huge success, can we look forward to a PMLD IV?'

The first PMLD conference came about because I had just started the PHD and was reading all of these interesting things, but reading them as journal articles which are not the lightest of reads, and I found myself one afternoon thinking “it would be so much easier to just listen to these people talk”. In a daydreamy state I sent an email to everyone I could think of at that time who I thought it would be interesting to hear talk, to see if they might be willing to record themselves talking. I figured if they were I could make a thing of it, and perhaps sell tickets and raise some money for a good cause. In all honesty I did not think it through very much at all beyond thinking “Who would be interesting to listen to”. I was amazed at how many people responded positively to that email and recommended other people to. Soon I had too many films to put into one event, so event 2 was invented.

The first event donated money to PMLD link, and then when I exceeded the ticket sales I had hoped for I was also able to use the money to fund trauma treatment for someone, the second event raised money for The Changing Places campaign and again went beyond what I had hoped so that it was also able to give a donation to Mary’s Beat a fund that gives grants to people with profound and multiple learning disabilities to enable them to have adventures. The third event is just coming to an end now, this one has given money to SENSE International India for their work with people with profound disabilities overseas. I need to recover a bit from this one before I consider a 4th event, but in a very similar way to the Sensory Projects I do not really feel as if I am in charge. Event 4 will happen if presenters come forwards, if it does happen it is likely to be Sept 2023 or even January 2024 (I’m trying to work out when it is easiest for people to attend, is it the start of the school year when so many people look for training or is it after the colourful chaos of Christmas in the new year when the evenings are dark and there’s not too many things to do?)

What is your favourite thing about your work?

The people. I love people, I find them so brave, and so beautiful, and I stand in awe of pretty much everyone I meet and how they manage their lives and just keep breathing in and out. And every now and then in my work I get to play a part in those lives, maybe make them a little easier, or a little more fun….and that is worth the world to me.

Which three historical figures would you invite for supper and why?

I’m not sure I could choose three from the pantheon to invite to dinner, but if I switched the question around a little so that it was me eavesdropping on a dinner there are periods of time in history where lots of great people all knew each other at the same time, like many of the pre-Raphaelite painters hung out together, the impressionist painters all seem to drink in the same café, and philosophers too. I’d want to be in the corner of the café that Jean-Paul Satre and De-Beauvoir drank at. I think Camus was there also, maybe a few painters. I’d like to go to dinner there.

You have a time machine set with two trips. Where are you going to go?

Am I allowed to change time? Can I go back to regrets and make them right? Or am I just visiting to explore? I do not want to go into the future or the past. I have enough trouble keeping up with the present moment. I have two sons, maybe I would go back and be at their births again, there is so much in those first moments of life I’d like to take in more. Although…if I did sneak a little back in time, I think I would watch my parents meet. They met at University and have been in love ever since. When my sister got married at 19 an old lady in our village stopped me on the street to coo over how sweet my sister’s relationship was and added “and your parents too, they’re so in love. I see them holding hands like they’re still sweethearts”. I’ve had a much rougher ride at relationships than my sister or my parents, I’m hoping it is smoother sailing from here on in, but I would like to go and watch those moments to see all that innocence and to know how wonderful what lies ahead of them is. It’s like a soppy film only soppy films they end when the couple get together and who knows what comes next, they might hate each other in a few years time. However ordinary my parents meeting might transpire to be I would watch it knowing that decades on they still love each other completely.

What three items would you take to a desert island?

Unlimited supply of sellotape, pick and mix sweets and pen and paper.

If you had a superpower, what would it be?

Invisibility please

Are you working on any exciting projects?

YES! Always

What are your top five multisensory story props?

Oh again with the difficult questions….

1. Pipettes for dripping flavours

2. Grated ice,

3. Any really wonderful, dongable, musical instrument,

4. Scented massage rollers made out of old deodorant bottles

5. Something to create a black out.

Tell me about your hooping Joanna

I am surprised to have learned things from it. A little while ago a friend of mine wanted to try a hoop class but did not want to go alone. I went along as her support. The teacher expected us to practice, and I never had the time, but each week the teacher maintained her hope that this week would have been the week when I would have practiced. Her hopefulness shamed me into beginning to carry the hoop around the country with me on trains (it fits on most luggage racks like a portable halo). I think it has done me good, the frippery of it, the fluff and nonsense of it, offsets some of the other things I do beautifully. In my studies I am considering embodied knowing and hooping gives me insight there, I do not know how to hoop cognitively, but my body knows how to hoop. And, as an autistic person I suspect it helps promote my mental health. Autistic people are known to live with higher levels of anxiety, and often mindfulness is suggested as a remedy to anxious people. The research into mindfulness is superb, it is a fantastic approach to anxiety for non-autistic people, but that research has excluded autistic people and there is emergent work that suggests mindfulness can inadvertently harm autistic people's mental health (it's also not great for people who have experienced trauma). Mindfulness invites you to occupy your mental present and that is only safe if your mental present is a safe place. However, hooping is an invite to occupy a physical present, it is like mindfulness in motion. That's my excuse anyway! Just before I got pregnant two years ago I had mastered being able to send the hoop from my knees to my neck and that felt like a big accomplishment, it is a skill I regularly lose, it took me ages to be able to do it again after pregnancy and I've currently lost the knack once again so I've got to keep hooping to maintain that sense of achievement. People who follow me on social media probably get sick of seeing hooping posts, although a few have begun to join in with my weekly tradition of Friday night 9pm hooping with wine (it's not always 9pm and there isn't always wine, but I like the plan!)

What advice would you give to your younger self?

I would tell her it gets easier.

...and your motto Joanna?

I am working to contribute to a future where people are understood in spite of their differences, and I will keep trying and keep hoping, keep breathing in and breathing out.

so what's the hooping got to do with it all?

Joanna Grace Links

Thanks to Joanna:)

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