On the Campaign Trail

Being a campaigner is fun and hard work in equal measure.  So far this week, I have co-presented at a Communication Matters conference in Leeds, been to a reception at the House of Lords and written this blog post on the train – and it’s only Tuesday!

As the youngest delegate at the conference, it was nerve-wracking presenting to about 40 professionals, parents and AAC (Augmentative and Alternative Communication) users; but when one of the audience says it is the best presentation, it makes the journey worthwhile.

When I started to spell everything I wanted to say, I never imagined that I would give a speech at the House of Lords.  But, thanks to the Diana Award, that is exactly what I have just done!  It was good to meet Penny Mordaunt, Minister of State for Disabled People, and make new connections for my campaign; and once again by inspired by the young people who are recognised by the Diana Award.

You can read my speech here:

 

I received the Legacy Award in recognition of my Teach Us Too campaign for all children to be taught to read and write regardless of their label.

It was an immense honour to receive this award remembering Princess Diana, who so often went out of her way to show solidarity with those society would rather forget about.

Her legacy award has given me a stronger platform on which I am a voice for the voiceless.  My dream is a special education system where academic competence is assumed, rather than assumptions about academic ability based on physical disability.  Unfortunately, current education policy is tipping the other way, with proposals from the Rochford Review that schools will no longer need to report to government on children labelled with Profound and Multiple Learning Difficulties (as I was).  This is against a backdrop where special schools are increasingly opting for non-subject specific learning, ie literacy teaching is no longer required.  This lack of accountability signals that the education of children like me is of very little importance.  Imagine Ofsted was abolished in mainstream education, because no-one really cared what children were taught in schools.  Yet this is what is happening to children like me in education.

If my mother hadn’t removed me from special school for a few hours a day to teach me to read and write I would not be able to write this for you today.  For a non-verbal child, learning to read and write is not just a life skill.  It unlocks our voice.  It gives us life in all its fullness.  I am not unique.  There are more children like me in special school who need an education system that believes they are worth teaching too.  Then my story of learning to write and communicate will not be so unique either.

I don’t have much time left, so I am asking you to get behind my campaign and use your influence to ensure there is accountability and aspiration for children who are often marginalised and judged.

My body is very weak, but my desire to make a difference for children like me is very strong.

With Diana’s legacy I am building my own.

 

Bravo for Body Boarding

Disability.  For me this is just a word that means I have to work harder to find ways around things.

So when I watch my sisters body boarding I am sure we can find a way for me to do it too.  Thankfully I am surrounded by family as determined as I am; so with my mother carrying the oxygen, my godfather carrying the body board and my parents between them carrying me, we parade down the beach.  Feeling the waves is exhilarating; riding the crest of nature’s force I experience a strong connection with our creator God.  And it’s fun.  Really fun.  When we make our way back to our spot on the beach, the adults tired and relieved I use my spelling board to say, “that was wonderful, let’s do it again tomorrow.”

 

     

Teach Us Too film goes live

Following the interest in my Teach Us Too film during and after the premiere, I have decided to upload it onto You Tube.  Aimed at professionals working with ‘PMLD’ students, my prayer is that this film will go some way to changing attitudes so that all children are taught literacy regardless of their label.  Please share the film with any professionals you know.  Thank you.

 

My Life Premiere

Red carpet, awards and celebrities – the premiere of my CBBC My Life film had it all!  On Friday evening Stanton St Quintin Primary School was transformed into the prestigious venue for the screening of the film made following me from the time of my confirmation until Christmas.  Friends, family and esteemed guests joined me for the unforgettable occasion. My valiant sister, Susannah, was my stand in voice for the evening as I presented awards to the boys with supporting actor roles, and an ‘Oscar’ to Lewis, my voice in the film. Surprising my friend Will with a birthday cake and over a hundred people to sing for him capped the evening off.

When will the film come out?  You’ll have to wait until January 2018 to see the My Life film but fear not – I have also made a Teach Us Too film with my friend David (from Sugar Films) which is aimed at professionals. Please contact me to register an interest in this film.

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Fantastic Fun at 500 words

Yesterday I was lucky enough to be invited as Chris Evans’ special guest to the BBC Radio 2 500 word final.  And what an amazing event it was!  Stories that made you laugh, cry, smile and shiver brought to life as they were read by famous actors and actresses; interspersed with great live music performed by Niall Horan, Olly Murs with Louisa Johnson, and Anne-Marie.

After the show I got the opportunity to meet the Duchess of Cornwall and explain to her how I write with my eyes and a bit about my campaign.  Wonderfully, I met the voice of my audio bible – David Suchet; had a chat with David Walliams about poetry and prose; and shared a joke with Chris Evans.

As if this was all not enough – guess what? Chris Evans has invited me onto his radio show!

#500words #BBCRadio2 #TeachUsToo

The Diana Legacy Award

The secret is out!  I am excited, honoured and humbled to have received an inaugural Diana Legacy Award from HRH Prince William and HRH Prince Harry at St James’s Palace yesterday.

Meeting the inspiring young people who also received the award was a privilege and I am humbled to hold the same accolade as them.

The Teach Us Too campaign journey has not been trail blazed alone, and I receive this award with thanks in my heart to everyone who has travelled the path with me;  and I am immensely grateful for the Diana Award for joining me as I seek to be a voice for the voiceless.

[see the day on Sky news and on tumblr]

all award holdersJonathan with HarryPrince William and Prince Harry give Jonathan award 2Prince William and Prince Harry give Jonathan award

 

Study Day, Story and SATs

On Friday, I had the privilege of speaking at a study day for professionals and parents entitled: AAC (Alternative and Augmentative Communication) & Literacy Best Practice Study Day.  Excitingly, there was a whole room of people as passionate about literacy teaching as I am.

Have you ever stopped to wonder what it is like being trapped in a classroom and babysat with hour after hour of age inappropriate activities? Nursery rhymes, songs for everything, sensory materials and the icing on the cake – being talked to in a voice usually reserved for babies.  All of this prioritised above literacy teaching, ANY literacy teaching. The type of literacy teaching that expects learning. When I was at special school I learnt to amuse myself in my inner world, often disappearing off with my best friend.  This was the inspiration behind my BBC Radio 2 500 words story, “Curtains to Freedom”, which you can read here.

Next week I will be sitting my Year 6 SATs. My dream is that in the years to come many children like me will reach their full potential and have the opportunity to learn to read and write.

Will you join me in making this a reality?

 

To find out more about AAC click here

 

Rejoice for Jesus has Risen!

Easter changed everything.  Before Jesus rose from the grave; death had won its victory over mankind, hate had triumphed over love and, in expending himself for us on the cross, hope had been killed.

Easter changes everything.  In the light of Jesus’ resurrection, life is offered in all its fullness now and promised in its completion in love forever.  Hope lives on unfettered by the grave, death’s finality vanquished, love defined and fulfilled.  Jesus Christ is risen today. Alleluia!

[click below to listen to Ian McMillan reading my poem on Radio 2 on Easter day]

Jesus’ Beckon

Part 1 – Death Friday

 

Hounded, helpless, horror uphill,

Mocking jeers crescendo,

Death’s stench, dark in despairing dread,

Oppressing fear’s echo.

 

Piercing soulful eyes fixated,

Excruciating pain,

Hope hanging, subsiding, drowning,

Dignity dies, my shame.

 

Part 2 – Life Sunday

 

Night’s black breaking: light’s dawn dancing,

Hurry quickening feet,

Heady spices; heavy grieving,

Overwhelmed – crumpled heap.

 

Erupting anguish obscuring

Gardener’s playful delight,

Agony’s deep yearning, aching,

Recognition ignites!

 

Exploding joyful elation,

Spirit’s music exclaims,

Touching, soaring – soul suspended,

Jesus beckons my name!

© Jonathan Bryan