Jo Grace is a long-time contributor to Disability Horizons and one of the UK’s most respected voices on inclusive practice, sensory engagement, and person-centred support. As founder of The Sensory Projects, she brings together professional insight from years of teaching and research with a deep commitment to seeing and valuing people with profound and multiple learning disabilities on their own terms. Her recent essays for Disability Horizons have challenged common assumptions about support and identity — from why support should be “person-appropriate” rather than merely “age-appropriate,” to how language shapes expectations and dignity in disability communities .
In a landscape too often dominated by one-size-fits-all solutions, Jo’s writing prioritises lived experience, sensory understanding, and the quiet work of attuning to what truly matters in people’s lives.
Remembering Dalila
Last year my friend died.
When you have someone with profound and multiple learning disabilities in your life you understand that it is more likely you will be attending their funeral than they yours.
I did not lose just one friend last year…
I have worked with people with profound disabilities for the last twenty years. And in that time I have attended more funerals of children than I have of adults. It gets harder, not easier.
Each family reminds me of the one before, their grief so raw, so desperate. At Christmas time I hang small white feathers by gold threads amongst the other decorations on my tree. I add a feather for each friend lost. I remember them. I promise their families: I will always remember them, and I honour the promise.
But when Dalila died, so suddenly after Flo, it made me stop and think.
What Joy Sounded Like
Dalila’s favourite thing on all of this earth was the sound water makes when it rushes down a plughole. She dealt with a lot in her seven years of life, she was often in pain, but I never knew her not to laugh at the plughole noise. And when she wasn’t in pain it could drive her to that sort of hiccupping laughter that if you are the adult in charge you worry could actually be dangerous. Dangerous not just for her, but for all around as we too gasped for breath and laughed at how ridiculous it was, laughed with the sheer joy of how much she loved it.
Dalila got her plughole nose at going home time at school, and on Friday afternoons for the last hour of the day: ‘Golden time’.
It was played at her funeral too, around me those who knew her best discovered they could laugh and cry at the same time.
I was one of the ‘randoms’ in attendance at the funeral, someone who had visited, popped up and done things and gone away. I wasn’t one of the team who cared for her at school, or in the hospice, I wasn’t family. I didn’t know anyone else there, and no one else in my life knew Dalila. So I didn’t go on to the wake, instead I drove into town and wandered about the charity shops thinking about her. I have two sons, the eldest has showers, I wondered if I could bath the little one that night in her honour…but he is frightened of that noise….
What There Was Time For
That noise that was guaranteed joy to her. How much of it did she have in her last year of life? An hour on Friday’s, maybe five minutes Monday to Thursday at school, an hour and twenty minutes total (about 2 days).
Compared to:
- two hours of assembly – (1hr lower school, 1hr whole school) (3days)
- five hours of phonics (a little over a week)
- five hours of number songs ( a week and half a day)
- seven or more hours of being pushed around the playground in her wheelchair by an adult who would pause for people to say hello to her, pause to chat to their friends. (almost a fortnight).
I gave my son that bath, I tried to make him laugh at the sound. But what I wished so bitterly then, and wish now still, was that I could have given it to her again. Just another 5 minutes of laughter. I wish she had had more of it in her life.
We build curriculums based around things we think are important, and maybe we are right. We run our school days to the routines that are expected of such days: circle time, assembly, golden time on Friday…
Running Towards Joy
It is worth stopping and thinking whose values we are running to, whose timetable, whose life it is it that is rushing away under our rule.
Go and tip a basin of water down the sink. Listen to the noise.
Who is Dalila in your life?
What is their plughole sound?
And how can you give them more of it this year?
Fight with all their life is worth against the systems that say this is how things must be done, this is the way of things, you must conform to this. Instead run towards joy, towards connection, towards laughter – ring in a happy new year.
Live it like it might be their last,
your last.
Love.
Flo would have fought for Dalila, she’d have found an app that made the noise, she’s have found plugs in charity shops, and she’d have been able to do a damn good impression of the sound. Flo had a ‘happiness audit’ she used as part of curriculum building for people with profound and multiple learning disabilities. You can access it for free on her website: https://sites.google.com/view/flolonghornsensorybooksfreedow/home
(cross-posted from the DH Magazine)