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.
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.
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:
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.
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.
This year we are all becoming evaluators of risk. Every activity is weighed to consider the possibilities of exposure to COVID, and assessed against thresholds of our own making. Like many I am really hoping I get to spend Christmas with extended family.
When I think of that first Christmas it is incredible to consider the risks God is prepared to take in His love for us. As the author of life itself God knew that the only way to save the story of the humans he had created was to write in the character of his own son, and send him into the world as one of us, in order that through his death the enemy, the devil, would be defeated. As a disabled person I know what it’s like to inhabit a body that doesn’t function at full capacity; how much more amazing it is to think of Jesus, God himself, becoming restricted from being divine to being a man and sharing our humanity. There is immense power in the humility.
So as we celebrate Christmas, I pray we will all encounter anew the God of incomprehensibly risky, unfathomably enormous love.
Inclusion is a buzz word when thinking about disabled people in society, but what does true inclusion mean? Today is International Day of People with Disabilities, with the focus on ‘fighting for rights in a post-COVID era’ and I’ve written about this in a blog post for the Diana Award here: Blog – The Diana Award (diana-award.org.uk)
I actually prefer the term ‘disabled people’, because I am not defined by my physical disabilities, although I am ‘disabled’ by a society which is designed for the able bodied and therefore not fully inclusive. Often inclusion is reduced to a box ticking exercise done by able bodied people who assume they know what works for disability. One of the straplines for today is ‘nothing about us without us’; in other words, true inclusion involves asking what works for us. In many settings this involves putting basic access in place like for example a ramp into a building, and then crucially having a conversation with an individual about what will help them be included. In September I wrote a presentation for Through the Roof on what inclusion means in church, which you can see here: Eye Can Make a Difference – YouTube. If you hoped this post would give you general tips for inclusion here are my thoughts: it starts with a mindset and attitude that everyone is valuable and should be included; physical and metaphorical barriers should be taken away; ask, ask and ask again – what works in one situation might not work in another, and what helps one person doesn’t necessarily help another. With that in mind the rest of this post is about what helps me, if you are hoping for more general ideas on inclusion you should finish reading now!
For me, the best inclusion involves an amount of information sharing on the part of the leader of the group I am in, and hours of preparation from me. When questions are sent in advance I can prepare some answers, and then in a group I can listen to other people’s ideas and respond with one word answers. Spelling takes time and I can’t spell and listen at the same time. During conversations I take time to write my answer, and the best people are prepared to wait, and to look at me whilst I am speaking rather than my communication partner who is speaking out loud what I write. Despite writing a book, there are still professionals in health who talk to me as if I’m a deaf toddler; louder, in a higher pitch and in simple sentences. This ‘special’ talk is demeaning and the antithesis of inclusion.
Since COVID I have benefitted hugely from online Zoom meetings and one of the meetings I join is a PhD focus group. Sarah, who runs the group, has written a blog about how I access and am included in the group, which you can read here: Accessibility, equality, equity, inclusion… – Back Pocket Teacher (wordpress.com). She concludes: ‘There are still many inclusion battles to be won, but with determination, creativity and the use of 21st century technology we can all achieve so much more.’
One kind word. It all starts with one kind word. The ability to encourage, set the tone, brighten the day. Our words have power.
Most of my life I’ve been unable to communicate with words. Yet, I have experienced their power: words spoken about me and over me. Now my words have power – words my eyes spell out on an alphabet board held in front of me. When I started school aged four with the educational label Profound and Multiple Learning Disabilities (PMLD) school staff presumed that I didn’t understand much. Words spoken to me were delivered in a ‘special’ high pitched sing song voice, words spoken about me or my classmates were said in a normal voice. Maybe we weren’t meant to understand the normal pitch. We did.
Every comment about us was understood by us. Every word spoken over us became part of our narrative. Every phrase relating to our inabilities defined us.
When I was seven my mother was encouraged to question the academic assumptions professionals had made about me, and she removed me from the sensory curriculum at special school to teach me to read and write. Just before my ninth birthday I started to spell out everything I wanted to write and say.
Then the power of words was invested in me. Using my eyes I love writing poetry and pieces like this one, which is being read aloud for me by my friend Alaric. I’ve also had my memoir Eye Can Write published. Having been non-verbal I realise the immense privilege and responsibility which comes with imparting words. As a voice for the voiceless, I set up a charity, Teach Us Too, campaigning for all children to be taught to read and write regardless of their educational label. For this work I was honoured to receive a Diana Legacy Award in 2017. With my charity I give presentations to trainee teachers and other professionals challenging them to see beyond the labels given to students, particularly the label PMLD.
This year the theme for anti-bullying week is ‘one kind word’. When you meet someone who is non-verbal, remember that not speaking doesn’t mean not understanding. Our words to each other, about each other and over each other matter. Let’s use them well.
In our society it is becoming increasingly difficult to bring a distinct Christian voice to the media, with the name of Jesus causing particular issues.
When a short children’s documentary was made of my life I requested it followed me for my confirmation and campaign, and relevant footage was gathered. However, when the final film and script came through, my confirmation, and any reference to my faith had been erased from the final cut. Long hours of work later I had re-edited the script and managed to convince the editor of 15 seconds on my faith which included the name of Jesus, although they still tried to change this when my friend was in the recording studio reading my words for me.
Including my faith in the documentary was not optional. Jesus is central to my life and if He hadn’t been mentioned it wouldn’t have been about my life. I felt betrayed and said if my faith wasn’t covered I would withdraw my consent for the programme. It shouldn’t be such a battle.
Ironically, it was the resulting 15 seconds which secured the producers a religious broadcasting award.
Naively, I thought that when it came to writing my memoir I would not encounter the same issues. After all, this was to be my story in my words, but again at the final manuscript stage the editor not only erased Jesus and at best replaced his name with a ‘higher spiritual being’. For apparent ease of reading, she also sent the changes as a clean manuscript so I couldn’t track the alterations. In a very short deadline I compared the two, and with some difficult conversations with the editor Jesus made it back in.
Keeping faith and Jesus in the media and in writing is important to the group, The Association of Christian Writers (ACW) of which I am honoured to be their youngest member. ACW is 50 years old this year and has released a book called ‘Write Well, A Handbook for Christian Writers’ which I was privileged to be asked to write a chapter in.
As ACW celebrates 50 years, this is a golden opportunity for the organisation to not only look back, but also forward to encouraging, equipping and releasing Christian writers and their distinct voices in an increasingly censored society.
Writing is my passion. As it happens I also need to write in order to speak. And I’m increasingly asked to ‘speak’ at events, but unlike most people I can’t present to slides and alter my words on the day to fit the audience, I have to write a script in full for each event. Mulling over ideas and fine tuning my words takes days and weeks, and often the final presentation has encased within it hours and hours of work from me, my friend Alaric (who voices my writing), my mother, carers and Sarah who put it all together in a PowerPoint. In all it takes about two hours for me to write and edit one minute of script, and the team another hour per minute to create the final presentation.
This term has been busy, hours and hours of busy! A few weeks ago I was very grateful for the opportunity through the Straight Talking AAC Group in Dundee University (which I join on Zoom every fortnight) to speak to second year medical students. Sharing experiences as a non-verbal person and asking awkward questions about assumed incompetency was fun.
Thanks to a pandemic accelerated paradigm shift in attitudes towards what is possible in lecture theatres, I am now able to ‘visit’ universities anywhere with Teach Us Too. So far this term we’ve done a live question and answer session with MA Education students at Dundee University and BA Early Childhood Studies at Teeside University. If you know of a course that would benefit from this please get in contact.
On Saturday I was honoured to speak at a Through the Roof event encouraging more people to champion the inclusion and involvement of disabled people in church. Seeing all the people log on to the morning gave me great hope for the church.
At the beginning of Saturday’s meeting someone from Through The Roof explained that as an organisation they don’t use the phrase ‘persons with disabilities’, but rather ‘disabled people’ as we are more disabled by the society we live in than by our illnesses. Unfortunately, those attitudes still exist in the education system, but through the charity I set up, Teach Us Too, we are trying to break down those assumptions. After half-term there is an excellent free literacy training opportunity for teachers and professionals working with students who use AAC, sponsored by Teach Us Too; please pass this on to anyone who might be interested.