During the holidays I was fortunate enough to visit the beautifully verdant island of Mauritius.  Located off the eastern coast of Madagascar, this impressive island is two-thirds the size of my home county, Wiltshire.

With its breath-taking imposing volcanic towers, deep luscious ravines, and unspoilt coastlines of white sands and turquoise waters, it is the embodiment of paradise!  Walking to the viewpoint to watch the Chamarel waterfall was the highlight for me.

Next my travels took me to Pompeii, to what is possibly one of the most notable of archaeological sites in the world. Once a thriving and sophisticated Roman city; now a ghost town encased in time.  Gliding through the streets like a shadow I received a personal guided tour of the main bath house, the bakery and a wealthy Roman’s house.

Confused?  What if I told you I visited both places within the space of a day, in my father’s study, wearing my heated slippers to stand on a tropical beach.   

In fact, the reality is that due to my complex health needs, physically venturing to all of these wonderful destinations is very medically challenging. That is where the wonders of technology have come to my aid in the form of a Virtual Reality (VR) headset.

If I should so choose, I could be meandering down the cobbled streets of Venice one minute and cascading down a white water river in Alaska the next.  With the ability to share what I see with a screen my family and I can experience places together.

Of course I’m not suggesting the headset is as good as visiting somewhere in person. This Easter I really went to the Lake District, where amongst other places I visited Dove Cottage, William Wordsworth’s house.  It was wonderful.  During lockdown I did a really interesting course on Wordsworth based at Dove Cottage over four weeks, so I wondered if it would be a let down going there in person.  It was not.  Sitting in his upstairs study and looking through a reference book from his bookshelf which my sister was allowed to hold, there was an atmosphere of simple creativity.  By the end of the day two members of our party had created writing of their own. 

VR is good, but if you can do go to different places yourself.  Send me an email of where you’ve been and I’ll go too in my VR headset.

Visiting Mauritius with VR in my father’s study and sitting in Wordsworth’s study at Dove Cottage

Passion Play Ponderings

Last summer I went to the most amazing outside performance of the life of Christ.  With a cast of hundreds, the story of Jesus is re-enacted in a number of scenes in the grounds of an estate, and the effect is mesmerising.  If you get the chance to go, do.  It’s wonderful.

Afterwards I was put in touch with James, who played Jesus and is a professional actor.  He is directing a passion play in Havant in the summer and invited me to see a rehearsal in action.  So a few weekends ago I went to Havant and observed the process of putting together the passion play with the volunteer cast.  Rather than giving them a script, they create a character, and act out how the character would react in different scenes.  Whilst I was there some of my poetry for Easter week was read as the action paused, it was amazing to hear it in context. 

At school for the last two terms I have joined a History of Art evening class, because although I can’t create art I do appreciate looking at it.  Towards the end of last term we looked at the northern renaissance and I was introduced to Rogier van der Weyden’s Descent from the Cross (below).  A passion play in a picture.  

In an email to James prior to my visit to Havant I mentioned the painting, which James had a copy of and brought to the rehearsal.  Imagine my surprise and delight when he gave me his copy to keep.

For my English Language A-level I had to write a monologue, and I chose to base mine on the structure of Robert Browning’s, My Last Duchess, but to use my newly acquired picture as the inspiration.  The result is below. 

The Descent from the Cross

That’s the Descent from the Cross on my wall,

Protruding into our lives. Sorrow’s call

From the past to us now; crafted with hands

As a symphony of grief, here it stands.

You say you don’t like it, but stay a while;

Let’s explore it together, a tactile

Expression of life in all the fullness

Of despair.  Their faces etched with sadness

As tears, that we almost taste, track their way

To us. Jesus’ stark limp body displayed,

Held by humanity he created,

Almost touching his mother, fainted –

We feel her crumpled fall, her colour gone.

You can’t go now, though it hurts to stay on,

For you will need this picture more one day

Than now.  Look, Mary’s contorted hands pray

At feet pierced for all our sin.  Her gaze met

By Nicodemus, whose religion let

This happen. Are we not complicit too?

But then follow Joseph’s eyes, cutting through

The anguish, even in his deep distress

He points to the skull and death’s full redress;

For, as you know, in Adam all will die,

But so in Christ will all be made alive.

Why do I want you, sister, to keep it

In my room? Sometime soon it will permit

A real grief when all the answers are known,

And you come to see this picture alone.


What makes a good friend?  A few weekends ago I reflected on this following my wonderful birthday party celebrating with friends at my Gentleman’s Club.  ‘A Gentleman’s Club?’ I hear you splutter.  Let me explain from the beginning.  A few years ago I had the opportunity to have my room re-decorated, and I chose deep reds and tartan curtains to recreate, as much as I could in rural Wiltshire, the ambiance of a London gentleman’s club; the likes of which are seen in productions such as Around the World in 80 Days.  Then for my 16th birthday I was given a pool table, which, when I banish my bed into my bathroom (the bed has wheels and the wet room has just enough space), becomes the final piece in the transformation. 

Following a grand opening in the summer, JB’s Gentleman’s Club was established, and members, by invitation only, don jackets (I recently purchased an oversize brown ‘jacket of shame’ from a charity shop should anyone forget theirs), eat together and play pool.  It’s a bit of fun, but also provides a social context to get together.   And through it I’ve been reminded of what friendship looks like.  During our December meet up my friend Mik dialled in from his trip to see family in India; it was 1.30am and he was wearing the jacket he had packed specially. For my birthday my friend Alaric wrote and performed a poem with 17 memories for 17 years.  It was the best present.

Today is Random Acts of Kindness Day and I’m reminded not just of the 2 examples above, but of many other occasions where people have thought of me and its meant more than its weight in gold: my initials in shells on Rushy Bay Beach; a video message from friends at a conference I couldn’t attend yesterday; an email saying my story has made a difference for a non-verbal pupil.  How can you bless someone today?

Teenage Kidney

Today my transplanted kidney turns 13.  Thirteen years off the debilitating rounds of dialysis, repeated infections and frequent hospitalisation.  Thirteen years of living a full life and embracing all the opportunities that have come my way. 

For me and my family today is marked with thankfulness: for the new life the kidney gave us, for the doctors and consultants who manage my health and tread the tight rope of immunosuppression. But we’re also aware that for another family today marks a different anniversary. Our debt of gratitude is to them, that out of grief they could gift life.

In May it was one year since Max and Keira’s law was passed, which has replaced opting into donation with an opt out based system. This has increased the number of organ donations, but with families still having a final say its important everyone has an organ donation chat with their loved ones.

To commemorate today I have written a poem.

New Year – Looking Back and Looking Forward

New year gives an excellent opportunity to reflect on the past and make plans for the future; due to less visitors than expected in the Christmas period I have had more time to engage in this useful activity.

2022 was a big year for me, particularly moving school for sixth form. This has been a huge success, studying English language and making new friends.  Outside of school my main focus remains advocating for literacy teaching for all pupils, and last year I attended 33 meetings about this.  It’s encouraging to see some shifts in thinking and practice as more special schools raise expectations for what is possible. 

Sharing my faith is a great privilege, and last year I was given the opportunity to do this at four very different occasions: the short testimony which I gave at school is below.

For each new talk I give I spend an hour writing and preparing per minute; and if the talk is being presented as a film it takes my mother, carers, and my voice, Alaric, a further hour per minute to put it together.

This year outside of school I will continue my advocacy work as a voice for the voiceless, and taking opportunities to share my faith. I also plan to use my time more efficiently so I get a chance to write more poetry. So, starting as I mean to go on I offer you my first poem of the year.

What are your priorities for 2023?

The short testimony I shared at school

This Christmas

Yesterday I went with my family to a carol service at Lambeth Palace, where I was asked to share a short reflection entitled ‘This Christmas’, which was ably read by my youngest sister Jemima.  This is what I wrote:

This Christmas is best seen through the lens of last Christmas. And what a contrast.  Whilst some of you were sat here for this beautiful service, I was joining online from home, where I have spent significant amounts of the past two years shielding. It’s such a joy to be here with my family today.

Things have changed for me personally, but also nationally and internationally, most notably the tragic war in Ukraine. Wonderfully God in his mercy is unchanging, as we return to the comfort and challenge of the Christmas story.

Whilst revisiting the narrative this year, I was struck by the significance of the census, in the way God worked through the seemingly indestructible power of Rome, to get Mary and Joseph to Bethlehem to fulfill a prophecy. Why was a Roman governor so concerned with people being counted in their Hebraic family lines? Mary and Joseph can’t have been the only people who needed to travel some distance to register.

Maybe it was just that. The desire of the Roman empire to exert control over its subjects like pawns in a chess game.  Echoes in images this year of thousands of refugees fleeing their homeland due to the desire of one man to control a nation that doesn’t belong to him. 

A census reduces people to a number, a category, a label. And I know first hand that being defined by a label can rob you of your individuality; in my case that meant not being taught to read and write because of assumptions made about me based on a label I was yoked with.  Its why I set up my charity Teach Us Too.

In contrast to the macro power wielded by a roman governor, we have a story of God concerned with intimate individual encounters.  A teenage girl, a carpenter, an old woman past child bearing age, a priest, shepherds outcast in society, wise men from a foreign country.  How might God’s story interweave with individuals today?

Our own census results for England and Wales show a decline in the number of people ticking the religion box.  At school I joined a diversity, equity and inclusion meeting, and to many people’s surprise I chose the religion rather than disability group.  The surprise for me was that most of the participants hadn’t thought about the difference between faith and religion. It led to me sharing my personal journey with Jesus in assemblies the following week.

In a world which dehumanises and devalues people, how can we find for ourselves and those around us the time and space for an individual encounter with Immanuel, God with us.

International Day of Persons with Disabilities

Today is the catchily known International Day of Persons with Disabilities or the IPDWD.  Unwieldy acronyms aside, we disabled people account for 1 billion people, that’s 15% of the worldwide population.  This year the theme is innovation, and I want to share with you three different films made by or with friends of mine.

Firstly, my friend Kate Caryer wrote, directed and acted in a film juxtaposing two different attitudes to disability and the implications on outcomes for disabled people; in particular the lifechanging effect of enabling and promoting communication.

Using her eye-gaze device my friend and Teach Us Too ambassador, Becky Tyler, creates art and is an avid gamer.  The BBC caught up with her and filmed her as she settles into her new life as a student at Dundee University, where she studies under another disabled friend of mine, Professor Annalu Waller. Her film is on BBC iplayer and can be seen by clicking this link: making art with my eyes

Finally, I wanted to share a film made by my friend Oli, who I meet at One Voice every year.  Using his eye-gaze machine he is an awesome DJ and I really enjoyed being behind the desk with him this summer; you can see him in action on his website here.  He lives in the Lake District and recently made a film for the Kendal Mountain Film Festival about scaling Winder in his extreme 8 off-road chair. 

All of us are living our best life thanks to innovations in disability which enable us to break down barriers in society one at a time.  

Disability Power 100

On Monday I was honoured to be named in the Disability Power 100 in the Rising Star category, as one of the most influential disabled people in the UK, for my continued campaign and charity work calling for all children to be taught to read and write regardless of their educational label / disability. Held at the Landmark Hotel in London it was a wonderful celebration, my first big in person event since the pandemic began, and a chance to meet lots of inspirational people – all forces for good in the disabled community.

New Adventures

For a long time it has been my dream to visit Scotland; to absorb the stunning vistas and scenery.  When I started my campaign in 2016 for all children to be taught to read and write regardless of their educational label, I was contacted by a retired teacher from Shetland, with whom I have maintained a regular correspondence ever since.  Through Karen’s letters and parcels I have been introduced to a country with its own distinct culture and proud heritage, including a wee number of new words and phrases.  And it gradually fanned into flame a desire to visit it for myself.  This summer my dream came true and it didn’t disappoint.  What a beautiful country with friendly people and a lot of interesting history.

As my holidays drew to a close my levels of elation did not, for an exciting new start lay ahead. During lockdown I was overwhelmed at the kindness that had been branched out to me by another local school, inclusion at its most flexible as I joined for English lessons on zoom.

Now I am a member of this school and I’m coming to the end of my first half term. Life has increased in pace as I study English language A-level and catch up with two years of missed school socialising with equal enthusiasm.

New adventures are great!

Scotland – poet relief in Sterling Castle, William Wallace memorial, walking near Helensburgh, Glengoyne distillary
Outside the front door of my new school

The SEND Green Paper

A few weeks ago I was invited by the Disabled Children’s Partnership to share my views on the SEND green paper with MPs. The public consultation is open on the green paper until Monday 11th July. Below is the message I wrote, which was recorded by my friend Alaric and made into a video.

My name is Jonathan and I am 16 years old. Until the age of 9 I wouldn’t have been able to write this speech, not because I didn’t have the potential, but because I was not taught literacy in special school. Being non-verbal this is the level of expectation we too often receive – that due to our complex physical needs we are incapable of learning to read and write. The green paper talks of all children reaching their potential, but doesn’t explain how or who will determine what that potential is.

Tragically many non-verbal children have the same experience I had of being given a sensory curriculum devoid of the written word. Through my charity, Teach Us Too, I have also been contacted by scores of parents who have tried and failed to convince their non-verbal child’s school to teach them basic literacy. These are parents asking schools to teach their children, a basic human right which is not being met. Some of these parents are removing their children from special school so they can be taught at home. I was one such child; so much for co-production, there is a very long way to go. 

The green paper talks about the need for excellent teaching and high standards of curriculum in every mainstream school – why exclude special schools from this statement? There is a very great need for aspirational teaching in special schools. Rather than advice for the deployment of TAs there is also a need for them to receive training in how best to educationally support pupils with SEND rather than just caring for them. With my charity I address trainee teachers and I am shocked to find that in most universities SEND is covered in just a few days of their course.  Training teachers and TAs in excellent aspirational teaching for all pupils, mainstream and special, will have a positive impact on the ability of SEND pupils to reach their potential.

In the green paper there is a welcome emphasis on the need for better early years support in identifying needs. But I suspect this proposal is more about searching for those children with hidden disabilities, rather than providing robust support to those children whose physical needs are obvious. By the time I entered special school I had acquired the educational label Profound and Multiple Learning Difficulties (PMLD).  But I didn’t have a learning difficulty, I had an access to learning difficulty. Early and effective speech and language therapy would mean children were less likely to be mislabelled PMLD, which according to the latest EHCP census figures accounts for 9,976 pupils in England. My non-verbal friends who had a good alternative and augmentative communication system in place prior to starting school have had dramatically better educational outcomes than those without.

In conclusion, the main question this Green Paper doesn’t answer is ‘How you are going to raise the aspirations and potential for non-verbal children like me?’ I have come today as a voice for the voiceless, I implore you to use your influential voices to enable more children and young people to be given theirs. 

The video of my presentation