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

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

Double Jubilee

What a long weekend! As an Elizabethan family it was wonderful to celebrate the 70 years dedicated service the Queen has demonstrated to following Jesus and serving her country. Back in February, my sisters and I entered the platinum pudding competition with our crown shaped cake, which I also wrote a poem about.  Although it wasn’t shortlisted we enjoyed making it for our neighbourly get together.

Last weekend also saw the celebrations for the Association of Christian Writers golden jubilee, which I was invited to present at.  For people wondering how I’ve spent my time since leaving school mid-May, the 23 hours it took to write the new content plus the 33 hours my various helpers took to put it together, might give you an idea of how busy it’s been! Meeting lots of other Christian writers was really inspiring and I learnt lots from those older and wiser in their writing journey.

 

Young People’s Mental Health

Until last week I assumed that everyone involved with children and young people was concerned about the affect the pandemic and successive lockdowns and isolation periods has had on young people’s mental health. But then I heard of someone who thinks it is all exaggerated. It made me wonder how many other adults think that the mental health crisis affecting young people is an exaggeration.

In the last three years there has been a 50% increase in the number of young people with a probable mental health issue. One in six children aged five to 16 are likely to have a mental health problem, so if you can imagine a classroom, that is five children in a class of 30.

Statistics can be quite dry, so if you are still not convinced here is my rendition of this issue in poetic form:

The Shores of Your Conscience

16 today!

Today I am four years older than the most optimistic expert thought I would live for. At 16 I enter a no-man’s-land: too old to be considered a child, too young to be considered an adult. A good place to sit and reflect.

When I look back I feel an immense gratitude to Jesus for being with me in the ebbs and flows of my life; guiding me, sustaining me and when life’s been tough, carrying me. It’s also a time to thank family and friends for sticking by me, admiring my great taste in shirts and agreeing my wit is exceptional!

After I have sat and enjoyed the icing on my cake, I will fix my face forward.  There is still plenty of journeying to do, but I know that when Jesus calls me home I will eagerly go and live in the garden forever.

New Year to Break Down Barriers

Happy New Year!

To begin this year I am bringing you two short but powerful videos made by friends who also use AAC to communicate.  Like me they both use wheelchairs and like me they are both nonverbal.  Using art and media they are breaking down the assumptions that people often hold. These clips, shown on Channel Four and the BBC respectively, bring the message of ability over disability to a wide audience. 

As we start the year I hope the clips bring as much joy to you as they do to me.

Becky Tyler, my friend and Teach Us Too ambassador on Grayson’s Art Club
Jemima Hughes’s animation shown on the BBC. Jemima made another excellent animation for the BBC called ‘How to Speak When You Don’t Have a Voice‘ which you can see here