Film of Sunday

Here it is, the film from Sunday.  My mother sharing her testimony, and my Susannah on stage reading my words, without a shred a nerves in front of thousands of people. 

Here is a transcript of my words:

Throughout my life I have known Jesus spirit with me: cradling me in pain, sheltering me from darkness and beckoning me forward.  Personally Jesus’ presence with me sustains and carries me through life’s journey with a contented calm in my soul knowing that whatever happens he will at last bring me home.

But Jesus’ spirit is not just to encourage us on our personal pilgrimage through the highs and lows, but God’s power working in us for His glory.  Wonderfully, the Holy Spirit’s use for us is not limited by our weaknesses, rather sometimes it is through the cracks that the light is brightest. 

Having a body as dysfunctional and disabled as mine it would be easy to assume that God only has special jobs for others, but even at a young age God used me, not in spite of my disabilities, but because of them.  When I was younger and before I could spell a recently retired teacher took me out in my wheelchair to visit anyone who was old and lonely. Sitting on their doorstep, I would wave and smile and make their day a little brighter, before we moved on to the next house.  None of my able bodied toddler friends would have had the patience and sit-ability to do my special God-given job.

Three years ago, almost to the day, I was recovering from a brief but intense illness and felt quite annoyed with God that he hadn’t taken me home. Questions turned to prayers and prayers turned to answers.  The Lord has a purpose for us all, and mine was to be a voice for the voiceless calling for all children to be taught to read and write regardless of their educational label.  Despite having a slow and laborious way of spelling out every word I want to say or write, God has used my voice to speak up for children to be taught literacy.  Through his power he has transformed my weaknesses: people seem to listen and take my message on board when I share it with them. 

Like water flowing through a watermill the Holy Spirit enables us to be used as God intended and so he gives me the courage to speak up for the voiceless, changing perceptions and prejudices through my charity Teach Us Too and my book Eye Can Write.

My prayer is that through God’s Holy Spirit we will all know Jesus’ presence with us, and God’s purpose for our life.

Trafalgar Prayer

What a wonderful Thy Kingdom Come event for Pentecost in Trafalgar Square yesterday. Worshiping with great music, including my favourite song played by the artist himself; listening to and learning from a variety of denominations, including the very welcoming Coptic Church, whom I spent some time with in their tent; and joining the fellowship of thousands of Christians. 

In front of those thousands, my beautiful and brave sister read out some words I had been asked to write, and my mother also shared some of her faith story. Here are some photos of the day (the video and the scripts will follow in a few days).  

Fantastic Teach Us Too Study Day

What a fantastic inaugural Teach Us Too Study Day we had on Wednesday. Teachers, speech and language therapists, occupational therapists, parents, teaching assistants, educational psychologists, case managers – we learnt and shared together about the principles and practicalities of literacy instruction for pupils who use augmentative and alternative communication. 

If my mother had not received advice from Marion Stanton on how to teach me to read and write, I doubt I would be writing this; so it was wonderful that she could come and share her expertise with us all. As part of her session the delegates got an opportunity to use some low tech communication aids to talk to each other, and it was illuminating to see how difficult and frustrating they found it.  For me this practically showed people the language limitations of any system where spelling has not been taught; as I have often advocated: there is nothing like being able to spell everything you want to write and say.

But the highlight of the day was hearing from and meeting Emma Maskell who came all the way from Sandside Lodge School in Cumbria to share her experiences of teaching literacy to her entire ‘PMLD’ class.  All of them communicate and are on a literacy journey: none of them have a ‘profound intellectual disability’ (the PMLD standards definition of PMLD).  Movingly, she shared the difference this had made when the class had sadly lost two pupils earlier this year, as communication had given them the language to express their grief and also the tools for the teacher to use this as evidence to access specialist music grief counselling.  At times on the literacy journey some people thought Emma was delusional for trying, although her school and senior management team have been supportive; we need more teachers with the tenacity and determination to keep trying ways for children yoked with the pernicious label PMLD to find the access which works for them and teach them literacy using this access.

Wish you had been there?  Really kindly Curtis, a student from Bristol, came to video the day for us – a massive thank you to him!  Snapshots of the day will be available on the Teach Us Too website soon.  

Showing my video
Marion Stanton takes the stage
Having a go at using low tech communication boards
Emma and me

Trafalgar Square next week

Join me this time next week for the Thy Kingdom Come Pentecost festival in Trafalgar Square where I will be sharing the difference the Holy Spirit makes in my life.  For the ten days prior to the event we are praying for God’s kingdom to come in our communities and amongst our friends and families, and at home we are using the brilliant Thy Kingdom Come resources in our family time.  

Two weeks to go…

In exactly two weeks we are holding the inaugural Teach Us Too Study Day, and I am so excited that Marion Stanton will be sharing her expertise in teaching literacy to non-verbal children like me. Without Marion’s advice and belief in me I doubt I would be able to spell.

If you or someone you know would benefit from this day, please spread the word and reserve a free ticket on Eventbrite. But hurry there are only a few left.

Youngest Visiting Lecturer at Bath Spa

Yesterday I went with Teach Us Too to present a lecture at Bath Spa University, and apparently I am the youngest visiting lecturer that they have had! Always on the look out for new ways to share the message of Teach Us Too to audiences which may be in a position now or in the future to change the educational outcomes for children yoked with the pernicious label PMLD. Until all children are taught to read and write regardless of their educational label, I will continue as a voice for the voiceless.

3 presenters
mid flow

Swindon Literature Festival

On Saturday I was honoured to take part in the Swindon Spring Festival and share something of my love of writing.  Yet again, my wonderful sister Susannah read my words from a fully lit stage, but unlike anything I have done before my words were simultaneously translated into sign language. With a green room of my own and a special table to sign books as well as a very warm welcome we were made to feel like VIPs.

Installation and Collation

Until yesterday I thought that new boilers were installed and newspapers were collated, but last night both of these verbs happened to my father when he formally became the Archdeacon of Malmesbury in Bristol Cathedral. And what a wonderful occasion it was! Joined by family, friends, and supporters as well as a long procession of robed church leaders, we enjoyed sublime music from the choir and a sermon from Bishop Lee.

Standing at the lectern, very little of my Susannah could be seen behind the bronze eagle, but her command of the space and every word she read could be heard clearly at the back. So yesterday was my chance to sit and be proud of both my father and my sister.

Happy family
My Susannah

A Dog at Last!

A few months ago I wrote this pantoum poem in anticipation of the imminent arrival of a dog to join our family. 

Sadly, that dog didn’t work out, and since then it has been a tortuous wait for another dog… but Diego, our golden retriever, has been totally worth hanging on for.  With the softest fur imaginable and big adoring eyes, he is the best companion I could have wished for.  Outside he cavorts with my sisters in the garden, inside he cuddles me.  So, here he is; Diego Bryan, the furry full stop at the end of our family: we are complete!

In the bluebell woods
Cuddles at bedtime

Re:Verse Poetry For Holy Week

Last night I was honoured to be invited to Malmesbury Abbey to take part in a poetry evening. This gave me the opportunity to share some of my poems alongside several other local poets. And what a wonderful evening it was.  Here is what I shared:

Over the last few years I have written a poem a year as a meditation on a different part of the Easter story.  For each poem I have tried to immerse myself into the scene and capture with words something of the experience, both the visual and emotional impact.  My journey through Holy Week will be read by different voices, I hope you find the experience enlightening. 

 

Palm Sunday

Hurrying, requesting, untying,

Crowds jostling, pressing and vying,

Spreading, smoothing coats, uplifting King,

Gates closed. Pause. Waiting to be let in.

 

Expectant hush for radiant bride,

Sun pours forth Son, doors flung open wide,

Shouts of jubilant acclamation,

City’s stones reverberation.

 

Majesty clothed in humility,

Shouldering peace for humanity,

Enraptured children weaving the crowd,

Spirits bursting with fresh praise aloud.

 

Vibrant coats flourished, palm branches danced,

Here is our longed for Lord at last,

Black blots conniving in the corner,

Reminding: it is not yet finished.

 

Maundy Thursday

How can my master be my servant too?

Stooping, untying sandals caked with grime,

In tender strength his hands my feet renew,

His garment white is soiled in drying mine,

With laughter, celebrations fill the air,

Punctuated by sombre lifted cup,

Imbued new meaning to salvation share,

Away stole stealthy satan covered up,

He breaks, dividing bread the mystery,

Off’ring redemption’s sacrifice for all,

Into the darkness, hymns from slavery,

Up mount we climb in silence of nightfall,

Shall I my master all in this deny?

The rest may go, but surely Lord, not I!

 

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!