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.[1] 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.

[1] Outcomes for disabled people in the UK: 2020 Office for National Statistics 2020

Earlier this month I was asked by ‘Aleteia’, a Catholic magazine, to write a letter to young people.  This is what I wrote:

 

Dear Friends,

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.

Your loving brother in Jesus,

Jonathan

I was honoured to be asked to write today’s entry for the Church of England’s Comfort and Joy booklet. As we come to the end of this difficult year I pray these reflections will be a blessing to you.

Nor is it small. Christmas is the biggest event in history and nothing can change that. Not even a global pandemic.

When God became man he didn’t come in what humanly speaking could be termed perfect conditions.  His mother had travelled days away from her family, and although we romanticise the manger I’m sure this was not the crib Joseph the carpenter had in mind for the baby. Nationally this was an unsettling time of upheaval as the Roman occupiers counted the population. And yet in the midst of the mess and complications God came.  Immanuel, God with us.

This Christmas many of us have had to change our plans and not see as many extended family or friends as usual, or even as we planned to last week. Understandably, we are all upset about this; for me Christmas is characterised by a house full of cousins and grandparents, and this year that will have to happen on Zoom. But as someone who is clinically vulnerable I want to say thank you for following the rules. That way people like me will hopefully be with you to celebrate Christmas next year.

So as we celebrate in our less ideal way, let us remember this is how God chose to send his son to us. Into the mess, the chaos and the unpolished areas of our lives. Jesus, Immanuel is God with us. He came as a light in the darkness, to bring us hope and that light and hope now lives in us.

My prayer this year is that we all encounter Immanuel, God with us, in our hearts and lives this Christmas.

Happy Christmas to you all.

Today is World Kindness Day, and I was very honoured to be asked to contribute to the youth tent. Here is a transcript of what I shared, ably read by my friend Alaric and made into a short film (below).

What do you want me to do for you? As a non-verbal child in a wheelchair this is a question that changed my life.  At special school I was surrounded by well-meaning people providing me with what they perceived to be a ‘kind’ experience, a sensory curriculum where a repetitive toddler book was read to me with a show of the pictures.  Kindness dictated that I would enjoy lots of different things to touch and smell and see and hear, all delivered in a sing song voice with a smile. I was five, I was six, I was seven.  But love starts from a place of empathy.  Love doesn’t decide what I need, it asks: what can I do for you?  Love puts others first; it is inconvenient and hard work, but in the end the rewards are so much greater. When I was seven I was taken out of my special school for a couple of hours a day by my mother to be taught to read and write.  It was hard work for us both, but it gave me the greatest gift: to be able to spell exactly what I want to say using an alphabet board with my eyes.  Rather than guessing what is kind, I can now communicate and make choices for myself.  Kindness is no longer to me, but for and with me.

Now I campaign for all children to be taught to read and write regardless of their educational label, through my charity Teach Us Too.  I long for schools to see beyond kindness bestowed on their profoundly disabled students, to an education which stops making assumptions of academic inability based on appearances.  Where potential is unlocked and voices are heard.

As a follower of Jesus, I am inspired by the time a blind man came up to him, and instead of performing the obvious kindness, to heal the man, Jesus asked him: “what do you want me to do for you?” And now I have my voice I can ask that same question to those around me.

When you’re given the label PMLD, it is based on you having profound and multiple disabilities. Unfortunately, this also means that children in the PMLD class will inevitably get ill and die. During my few years at special school three classmates died, and since I left there have been more.

Children labelled with PMLD are also assumed to have a profound learning disability, which usually means that they haven’t been taught literacy and don’t have a means of independent communication (I’ve written extensively on this elsewhere). Without the means to communicate, grief is very difficult to bear, and if people around you think your academic label means your unlikely to understand then it makes it harder still.

Below is a triolet poem I have written on this:

Thankfully, this situation is beginning to shift as some people begin to realise that PMLD students are often mislabelled, and with the right support can communicate (there is still a very long way to go on this, which is why my charity Teach Us Too is so important).

One person who does believe in the abilities of her ‘PMLD’ students is Emma Maskell-Ludlow, who wrote in an article for the SEN magazine about a pupil in her class who:

‘brought us all to tears by telling us how much the passing of another of his classmates affected him. Despite having a vocabulary limited to what is currently on his device, he found a way to tell us how sad he felt, how much he liked his friend and how difficult he was finding the situation. It’s hard to imagine what it must have been like for him before he was enabled to express his emotions.’

Another person I am privileged to call a friend is Sarah Helton, who through her work with SEND and bereavement is calling for equality in bereavement support.

Below is an interview which she kindly gave me into her work, I’m sure you will find it as interesting as I do.

Last time I met with Sarah Helton, in April 2018

Today I am wearing green for World Cerebral Palsy Day. You might think, like I did, that cerebral palsy is not very common, but it affects 1 in 400 children in the UK*, and of those 1 in 10 use Alternative and Augmentative Communication (AAC)**. Apart from statistics like these it is very difficult to generalise for cerebral palsy, as the brain damage affects us all differently. But for some reason it is seen as fine to generalise for physically disabled non-verbal children, and to yoke us with the educational label PMLD, and assume we all have a Profound intellectual disability. For me, and many like me, it is these assumptions which are the most disabling. Assumptions that, because we struggle to communicate we must be intellectually disabled; assumptions that we need to be talked to and treated like toddlers; assumptions that our quality of life is determined by labels.

In researching for this blog post I found some very depressing videos about what it is like to live with someone with cerebral palsy; but I also came across some great examples of people with cerebral palsy loving active and fulfilled lives, with the support of their family. People like the Cheetham family (see video below), who use social media platforms to raise awareness about cerebral palsy. Hannah answers questions on her AAC device and shows how fulfilling life can be.

In solidarity with everyone who has cerebral palsy I wear green, but just like the clothes you wear don’t define you, so cerebral palsy, PMLD or any other label does not define us. Next time you meet someone who looks different to you, speaks differently to you, dressed differently to you, take some time to get to know the person rather than make assumptions about them. That way we can all enjoy a life full of colour.

* NICE 2017 ** NICE 2020

Today is National Poetry Day, and the theme this year is vision.  During the summer I was asked to write a poem for the Diana Award to celebrate the amazing visionary work that the award recipients do across the world.  Princess Diana believed that ‘young people have the power to change the world’, and the recipients demonstrate that in spadesful from Faith producing thousands of blankets for people undergoing cancer treatment in Canada, to Nikhiya supplying bags, books and blessings to thousands of Indian school children, to Nik advocating for kindess and equality in the UK.

Here is the poem I wrote, and some Diana Legacy Award holders reading it. Enjoy!

As summer sighs its last through a sunny September day it feels fitting to reflect on what this summer has been. Unusual springs to mind – quieter and less busy but blessed nonetheless. Lots of beautiful walks in parts of our county we hadn’t explored, plenty of picnics and smatterings of meeting friends and family from a two-meter distance. And the sea. Everything is put into perspective when you spend time at the beach hearing the rhythm of the waves and knowing that the tide will continue to rise and fall even after you’ve packed up and gone home. Creation held by the Creator.

Last week my sisters returned to school and all my friends did too. But we decided with my consultant that I will continue my subjects from home. Not an easy decision, but sometimes the right decision can be the hardest one. During lockdown I wrote a series of tweets using the hashtag #ThankfulNotFearful, but as the rules tighten again I think for me the challenge is now #JoyfulNotResentful. And there is much for me to be thankful and joyful about as my health is good, my friends keep in regular contact and I can attend my church every weekend. Without travel to and from school I also have more time for writing, so watch this space…