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.
This was the summer of risk. Initially it was about the risk of getting pinged or told to self-isolate by Track and Trace, then it became about how risky each activity was in terms of potential exposure to COVID. But it was also a time of opportunity: a chance to meet many people in person who I haven’t seen for years; to fulfil a desire to visit the extraordinarily beautiful Cornish coast and to have a go at some new activities like paddle boarding and pistol shooting (though you’ll be glad to hear, not together!)
Summer memories are fast becoming a mirage as the new school year takes centre stage. Unfortunately, the constant need to re-assess risk remains, but I continue to live life in all its fullness within the limitations of what is sensible. Thankfully, all the online opportunities presented by the pandemic continue, so that on Tuesday, for example, I could be part of a presentation online at the Communication Matters conference at 11:15, attend my maths lesson in person in Malmesbury at 2:30 and speak to MA education students at Dundee University at 3:45. Risk and opportunity, two unusual bedfellows that we live with going forward.
When you look back over the last year what lessons are you going to take with you? Life has so dramatically changed, and as the end of restrictions come into sight, it is tempting to start imagining what life will be like when everything returns to ‘normal’. But if we close the door on this past year we will miss an opportunity to take its lessons with us.
For me, the chance to see more of family and friends who live further away on Zoom is something I will continue going forward; as well as the daily walk with its silence to appreciate God’s creation.
Wider than the consequences for us as individuals, there are the changes in attitude which we can all take forward to improve society as a whole.
All my life I have benefitted from people thinking out of the box in order for me to be included: my local village primary school who took me on their roll despite never having had anyone else in a wheelchair; the residential centre that got my friends to hoist me up the climbing wall; my youth group that set up a camera in early March last year so I could join the group from home. Sadly, there have also been plenty of times when the computer has said no!
On the face of it, this has been the year that the computer has said no. Many events were cancelled or postponed and life changed dramatically. But it has also been the year of thinking out of the box, where new solutions have had to be created. We’ve discovered that when we really value something there is often a way that it can continue; for example, recordings of plays brought theatre into our homes, many community groups set up online and church services continued virtually. But remarkably, we’ve found that some things become possibilities whilst in a thinking outside of the box mind frame; people who could not meet due to distance now find they can, and people who have childcare responsibilities find they can easily join a group from their own home.
In November I presented at the launch of the Disability History Month which had the theme: Access – how far have we come? How far have we to go? After listening to all the contributions I realised that the fundamental issue lies in attitude. Disabled people need to be valued as people, so that society can’t imagine life without us. Access would suddenly not be an issue.
For me this has played out on a small scale in relation to my schooling. All winter term I requested from my school that I joined lessons virtually, and there was a plethora of different reasons why this was not possible. In the meantime, my sister’s school, which I am not on the roll for, heard of my plight and decided to help. So, since November I have joined my cohort there for live English lessons from an iPad on the table. The only boy in an all-girls year group. Using the chat function I have been able to contribute to the discussion, and more importantly, I have been made to feel completely included. It took a desire to include and compassion, coupled with a can do attitude, and then the barriers could be overcome.
None of this comes as just an access issue, there are far deeper consequences to thinking out of the box. In a study published by the Office for National Statistics it was found that disabled people are four times more likely to feel lonely than non-disabled people, and have significantly poorer mental health. Maybe going forward we will all be more compassionate to those for whom access is an issue. But further than that, society and communities are richer with everyone included.
This is the year that we have all been forced to find new solutions, and we’ve discovered that when we value something it can continue in a new and sometimes improved way. As we crawl out of lockdown, let’s all take this new mind set with us. Life is richer when we all think out of the box.
Earlier this month I was asked by ‘Aleteia’, a Catholic magazine, to write a letter to young people. This is what I wrote:
We are the generation who will have spent the highest proportion of our lives being affected by the pandemic, and as the countries of the world start to emerge from the effects of successive lockdowns, we can start to think about how our lives will be altered going forward.
But first we need to look back at the past year, and consider where we have seen the finger of our Lord writing on the canvas of our lives. For me the last twelve months have been a challenge as I have been shielding and unable to attend school, with school work reduced to boring worksheets and not seeing my friends in person for months which makes me feel lonely; but they have also brought great opportunities for learning new things about myself and my faith.
During the first lockdown there was a lot of uncertainty as the concept of the pandemic and its consequences were so new and unknown. But one of the most dangerous things gripping people was fear. It invaded our mental health and paralysed our ability to live well. So during spring last year I started a discipline of writing something I was grateful for each day, which I posted on Twitter under the hashtag #ThankfulNotFearful. Having set myself the challenge I wasn’t sure I would be able to find different things to be thankful for every day, especially as not much was happening, but I found the exercise humbling. Connections with friends near and far on zoom, baking with my sisters and the beauty of the countryside I live in, meant at the end of a day I always had a lot to choose from to tweet about. Our Lord’s goodness and generosity are infinite.
September saw my friends all return to school, whilst I remained at home with no online lessons – alone again. Now the risk for me wasn’t fear, but resentment. The gnawing, bitter feeling of missing out. As winter set in, it was easy to always be thinking about a time in the future when life would be more normal, when winter would turn to spring. But I realised that to wish away the time we are in is to miss the value and lessons each season brings. Contentment lies in living in the moment we’re in, with our hearts open to our Lord, and with schedules stripped bare of extra activities and the time to travel to them there is more time to enjoy being together as a family: long walks, film nights and board games. Winter has a unique beauty of its own.
Whatever the lessons of your past year have been, we can all testify to the life giving, constant goodness of our Lord, who carries us through the hard times in His loving arms. Having experienced this in our youth we will be prepared for a life full of trust in our saviour. This is my prayer for us.