“Like a bird released from a cage, I am free to fly in the open fields”
Jonathan Bryan, a 14-year-old author, poet, charity founder, campaigner, and Disabled non-verbal champion for inclusion, is interviewed by Richard Rieser for Inclusion Now.
Jonathan, tell us about your home, family and friends – how does your household operate?
“I live in a small village in Wiltshire with my parents, two younger sisters and our golden retriever; and along with a team of personal assistants (PA) we make a busy household which never sleeps, as my night PA are awake all night.”
And what about the nature of your impairment and the impact it had/has on your functioning?
“When my mother was pregnant she was in a car accident and I suffered a placental abruption, which starved my body of blood and oxygen. Following this, I was diagnosed with cerebral palsy and end stage renal failure and received a kidney transplant just before my fourth birthday. After my transplant I contracted Adenovirus (they have adapted a chimp version of the Adenovirus to make the Coronavirus vaccine), which left me oxygen dependent. The combination of these impairments has left me with a worn out body but an alive mind.”
What were the pluses and minuses of attending your special school?
“When I was four, I started at special school where I was taught by a lovely teacher and made good friends. I was labelled as PMLD (Profound and Multiple Learning Disability) so was given a sensory curriculum. When I was in reception this was fun, but as the years went on it was obvious that there was no expectation of progression and no teaching of literacy, or even understanding that we develop in interests beyond pre-school. This was frustrating and demeaning.”
Tell us how your mother and others found out about your eye pointing method of communicating and developed it with you?
“When I tried an eye gaze computer it didn’t work for me and I found it very frustrating, but my personal assistants stood behind the machine could see where I was looking; so we started using a Perspex e-tran frame with my learning resources stuck to it and my carers and mother pointing at where I was looking.
At special school I was not taught to read or write, so my mother took me out of school to teach me at home for a couple of hours a day. After a year and a half, I had learnt enough to spell out everything I wanted to write and say, using the alphabet divided into colour coded groups and stuck to the e-tran frame. Each letter is two looks on the board. I have a separate board with numbers stuck to it for maths.”
Explain the feelings and perceptions you had from no longer being ‘locked in’?
“Throughout my life I have been able to use non-verbal communication, but there is nothing like being able to communicate my thoughts and feelings using words. Life is richer, life is deeper, life is fulfilled. Like a bird released from a cage, I am free to fly in the open fields.”
Tell us about going to your local primary school? How did your peers and teachers learn to support you?
“My local village primary school went out of their way to include me, both in the classroom and out of it, by for example, joining my class on school trips and residential. Where possible the teachers sent lesson plans and resources in advance so my carers could adapt them to make it easier for me to join in. In the class, I was often asked a question and then the teacher came back to me a few minutes later for an answer. My table had table raisers so my wheelchair fitted under the table, and my class partner sat on a stool. The layout of the classroom was adapted so I could access the parts of the room I needed to. For our music lesson I took in Soundbeam so that I could join in. In games my peers took it in turns pushing me, as far as I was concerned the faster the better (my carers didn’t always agree with this philosophy). Sometimes I would take my walker in and my friends would whoop and clap when I managed to move it. All my peers could use my spelling board for yes and no, and one of my friends learnt to use my board for all my communication, she was so quick my personal assistants became redundant as communication partners.”
How did you feel being included and do you think all Disabled children should have the chance to be included?
“Being included as part of the class and school is great and makes you feel valued in the community. Before I could spell, I attended my local primary school for one afternoon a week, which was always fun and I made some good friends.”
What do you think will need to change to make inclusion a reality?
“If everyone valued inclusion, it would be more of a reality. It takes belief in the importance of inclusion and a can-do mindset to enable it to happen.”
Based on your experience you started a charity and campaign ‘Teach Us Too’. Tell us why you set this up and some of the main impacts it has had to change things for children with complex communication needs?
“Tragically, there are many children with academic labels like PMLD (Profound and Multiple Learning Difficulties) who are not taught to read or write at school. Expectations founded on labels often leads to a lack of educational aspiration. For non-verbal children like me, literacy is not just a life skill, literacy gives us a voice. Even at its most basic, being able to write simple words gives us the ability to say what we want in our own way.
With my charity ‘Teach Us Too’, I have sought to raise awareness of this issue, I’ve done interviews, spoken to thousands of trainee teachers and heads of schools. We challenge attitudes and assumptions based on labels, influence educational practice and encourage ambition, and share good practice for practitioners and parents alike. Until all children are taught to read and write, I will continue to be the voice for the voiceless.”
Tell us about your transfer to secondary school? What worked well and what could have been better?
“When I transferred to secondary school, I made a small pamphlet explaining who I was, why I needed a wheelchair, and crucially, how I communicate. It was folded A5 and I tried to think of the questions people at school would like to know about me, and then answer them. The pamphlet was given to everyone in the school the summer before I joined, including the new year 7s on their taster day. As a result, everyone at secondary has always talked to me in a normal voice, knowing I understand. Early on, my tutor group had a session on other ways of communicating including having a go at my spelling board. After the first half term, my care team and I had a meeting with the teachers on how best to support my learning in the classroom. Ideally this happens every new academic year, as close to the start of term as possible, as I have new teachers every year.”
Tell us about your writing?
“Writing is my joy and passion. In 2018 my first book, ‘Eye Can Write’, was published, in which I shared my story. I regularly write blogs on my website, eyecantalk.net, and write articles and poems when my school work allows.”
Lockdown for Covid-19 has been difficult for everyone, but you have been out of school for 10 months because of your high risk of infection. How have you coped and what thoughts have you had about coping?
“From an educational point of view, lockdown has been really difficult. Like many secondary schools, during the first lockdown my school produced sheets of work for us, to be self-marked. I felt this didn’t further my academic progress like one would have hoped, or anticipated; and, as I’m sure my peers found, worksheet after worksheet was very boring and demotivating. This time lockdown has been brilliant, and I have had my first online lesson from my school since March last year.
During the first lockdown, I started tweeting everyday using the hashtag of my own making, #ThankfulNotFearful, because being thankful and finding and celebrating things every day is a way to help us appreciate all that we’ve been given. In September, I added #GratefulNotResentful, in a bid to match the mood as restrictions started up again. Living life in all its fullness means making the most of the situation we are in. New opportunities have opened up for me because of the lockdown, rather than in spite of the lockdown. For example, I have had conversations with people it would have been logistically difficult to meet, and the more accepted universal use of platforms like Zoom has opened a new world for me.”
How do you think we can get more equality for Disabled children and Young people now and in the future?
“Disabled people need to be valued as people so that society can’t imagine life without us. If the mind-set changed from ‘how can we accommodate disability’ to ‘how can we make sure everyone is included’, we could make amazing progress.”
Jonathan’s poem for Disability History Month 2020
We are not capable of learning
So do not tell me
There’s something going on behind the disability.
Treated as useless handicaps
Minds with nothing in there, tragically
Stuck in a wheelchair,
Disabilities visibly crippling –
Just incontinent and dribbling,
We are not
You should make our minds
Stagnate in special education!
Learn to read,
Learn to spell,
Learn to write,
Instead let us
Be constrained by a sensory curriculum.
It is not acceptable to say
We have the capacity to learn.
School should occupy us, entertain us; but never teach us
You are deluded to believe that
Our education can be looked at another way!
Now read it again from the bottom line up.