Why are we so afraid of the ‘d’ word? Why do we avoid saying it out loud, and instead use a whole raft of euphemisms? And when it comes, why do we turn to poems and sayings that deny its existence?
Death is not ‘nothing at all’. For the person who has died, death is the end of a body that has stopped working and the beginning of the soul’s new life.
Death is not ‘nothing at all’ for the people who mourn. It is life changing, life shaping, life moulding.
When Jesus went to the graveside of his friend Lazarus we get the shortest profound verse in the bible. Jesus wept. He stood at the grave and wept.
As I look forward to being in Jesus’ garden forever, I am also trying to prepare my sisters for when I am not here. I am their big brother after all. And I long for them to experience the freedom to follow Jesus who wept at the grave and who has conquered death.
(I am writing this now because it was All Saints Day yesterday, rather than because my health has deteriorated!)
Being able to spell out everything I want to say has transformed my life; but when it comes to relationships with family and friends I have found that it is the questions I ask, more than the answers I give that has deepened the connection between us.
Last year during AAC Awareness month I set a challenge for people to try being non-verbal, which you can see here.
On Friday I was honoured to present at the Angelman UK Communication and Literacy Conference, where I also got to meet one of the international gurus on the topic of literacy for AAC users, Jane Farrall. Apart from telling her she was a hero, I also got to ask her important questions about how to best spread the message of Teach Us Too, and how I should spend my time promoting the message that literacy transforms the lives of people who use AAC.
During the summer I asked every family member and friend I met what I should write next, and I got almost as many ideas as times I asked the question. But, on the last day of my school holidays, my godmother responded to my question with a question of her own: “What is on your heart? What do you think about the most?” With a question she had cut straight to the nub of my conundrum and the way forward became very clear.
So my challenge to you this year is to think about the questions you ask more than the answers you give.
Wherever you go out at the moment, you hear people wondering where the summer went; and most schools got more than our five and a half weeks. But, that still left plenty of time to go on holiday, meet up with friends and try some new experiences.
Thanks to BA I became the pilot of a Boeing 747 for the afternoon and successfully landed the aircraft at Heathrow. Usually, nothing beats the real thing, and there was nothing simulated about my first Prom, a wonderful mix of totally absorbing Russian music.
Meeting up with friends is always a highlight of the summer, and this year as well as enjoying their company I had a question for them: ‘what should I do next?’ for every time I asked the question, I got a different answer. So, watch this space – it is going to be a busy year ahead!
Last week I had great fun being interviewed by the Scottish author, Wendy H Jones, for her Book Buzz on Mearns FM. Set up like Radio 4’s Desert Island Discs I got to choose 5 songs, and Susannah kindly read my answers to questions I had been asked in advance, though I also found time whilst the music played to add a bit of extra banter.
On Thursday evening I was honoured to attend the Sandford St Martin Awards at Lambeth Palace where the CBBC documentary My Life: Locked in Boy won the Children’s Broadcasting Award. It was an amazing evening with the great and good of TV and radio, and I enjoyed being part of some interesting conversations.
Once again thanks go to CBBC for taking a punt on me; Sugar Films for taking the plunge; and David, the producer and cameraman, for taking the prize with me.
If you missed it the first time round, my programme can be seen via the Teach Us Too website here.
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.
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).
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.
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.
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.