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.
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.
This time around, lockdown has been a completely different experience. As a teenager with complex and multiple health issues I have not been back to school since March, but until a few weeks ago I had seen friends from a social distance at church, at church youth group and in my garden. Now even that has stopped. The solidarity and comradery experienced in April, May and June has dissipated, because this time very little has changed for my friends; school is open and life goes on. My sisters groan when lockdown is mentioned – for them this news went stale in the summer. In the spring I heard it said that we are all in the same storm, but experiencing it in different boats. Now it feels like even the storm we are experiencing is different.
Having spent much time in hospital I am used to missing out, but feeling ill, I never felt up to much. However, there have been times when I have been completing a course of intravenous antibiotics or visiting the hospital for thrice weekly dialysis, when the feeling of exclusion has been a part of life with renal failure. If the first lockdown brought anything, I hope it is that we’ll all have more compassion and understanding for what it is like living with a health condition, where missing out becomes part of life.
In the spring we were all so grateful of the weather, with, “thank goodness its sunny” becoming a regular refrain, often appended with, “can you imagine being locked down in winter?” So with an increasing sense of impending doom we found ourselves faced with a winter lockdown. And winter weather has lived up to par; wet, windy and wild tempered by days of damp grey nothingness. The trees have cried their leaves and stand bare and bereft in every field. Every year it is depressing and this year seemed set to be more so. Until I was introduced to an article called ‘Covid: how to survive a winter lockdown from those who’ve done it’ and the concept that rather than seeing winter as something to endure, we should embrace winter for what it’s worth. I have been in danger of not recognising or celebrating the season I am in, both physical and metaphorical. What if rather than wallowing in winter blues and lockdown frustration, I see these times as seasons? Seasons not to get through, but seasons to embrace.
How I am experiencing a winter lockdown has been transformed. On my daily circumvent of the fields in my village I’ve started to rejoice in the landscape laid before me: winter shadows; silhouettes of the trees displaying the intricacies of their structure (something that is lost when covered in leaves); the squelch of mud on my three wheeler tyres; the drizzle on my face; the sound of the buzzard pair over my head.
There is extra time too, saved by the van journey to and from school, and not waiting between lessons. Time I can utilise to learn new skills and enrol onto one of a plethora of online courses. So far I’ve studied an introduction to classical music with a professor in Yale University, completed a Leith’s cookery school course for teenagers and done an online poetry course. Nothing though beats live lessons. For my friends, these are ‘just lessons’ but for me they are the difference between dry worksheets and tick boxes, and the interaction of a teacher in the classroom; explaining, answering questions and giving feedback. In contrast to the frustration of school work, I have been very blessed that my grandfather has been giving me lessons via Skype in our shared interest in etymology. Every week since the first lockdown, and twice a week since September, we have met to discuss a book on etymology and for Grandpa to impart some of his vast knowledge in English place names. This week we are meeting for lesson 32!
Whilst I feel disconnected from sharing moments together with my friends and the banter in the corridor, I am very fortunate to have friends who include me, write me messages and play games with me on Zoom. One day when I was feeling a bit low my friend wrote me this, ‘Looking forward to being able to see you at school, it may be a very long time but we’ll always be here for you.’ If you know someone who is alone, never underestimate the power of a quick text.
Rather than thinking too much about the people I miss, I have tried to make the most of opportunities to make new connections and strengthen relationships that are hampered by distance whether we’re in lockdown or not. Unusually, I have also been able to say “yes” to everything that comes my way without wondering how I will fit it all in. Opportunities have increased with things being online, for instance last week I was in a group at Dundee University at 2pm, met a consultant in Leeds at 3pm and shared a video for UK Disability History Month at 7pm!
For me, travel has always been tricky. I don’t like sitting strapped in my chair for hours in the van and rail travel is restricted to day trips, because I need so much equipment for an overnight stay. Many years ago I went on a train to France, but I needed less than half the extra oxygen I need now and just transporting what I need for a day trip would be difficult. Flying has its own complications, because the reduction in air pressure would probably mean I spend the journey in my ventilator. Now everyone is experiencing some of these same restrictions and it’s never been easier for me to widen my horizons. The need for virtual travel is now universal.
Whilst I am locked down at the moment, I spent the first nine years of my life with my ability to communicate locked in. I would choose a year of lockdown over a day of locked in. Another upside to this season has been the ability to spread the message of my charity beyond the confines of geographical restrictions. Rather than being restrained in lockdown my voice has been amplified in ways I couldn’t have imagined.
By far the most surprising benefit of lockdown have been the repercussions on my health. In shielding I haven’t just avoided Coronavirus, but also the other seasonal illnesses which usually come my way. And my kidney hasn’t felt this happy since transplant. What my consultant agreed to let me term “my miracle time”. We both know it probably won’t last, so I’m making the most of it whilst it does.
Every season has a rhythm of its own, and whilst time outside is now reduced to the daily walk, inside my sisters and I have more time to bake and watch films snuggled together in my duvet. During the last lockdown I tried to tweet every day using the hashtag I made for the season #ThankfulNotFearful because fear was culpable in its crippling nature. From September, I realised that the equally damaging more insidious danger of resentment was becoming an issue for me. So now I tweet #GratefulNotResentful as much as a reminder to me as a potential help to others. Thankfulness and gratitude sprinkled with generous amounts of laughter will carry us through every season we live through.
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.
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.
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!