[Note from Chantal: I can’t remember why this essay, which Jonathan wrote for a competition at school, was not shared on his blog. We found it recently and have shared it on Teach Us Too, I thought it would be fitting to share it here also.]

Can you imagine not being able to speak? For you that would probably be a major inconvenience. But you would also find ways around it, using your hands to gesticulate and writing things down. Now imagine you can’t accurately use your hands and you’ve never been taught to read or write.

Until the age of nine this was the story of my life. I still can’t speak, but when I became literate I could spell out everything I wanted to communicate.

On entering the education system, I was assigned the label Profound and Multiple Learning Disabilities, or PMLD for short. Unlike other educational labels such as dyslexia, PMLD does not have a diagnostic test and is defined in the PMLD Standards as a ‘description rather than a clinical diagnosis’[1].

Instead this label defines the education, or rather lack of it, that you are going to receive. Many children who have very limited control of their bodies and are non-verbal are assigned this pernicious label at the start of their education. I was one of them. Without a reliable method of communication, this label is given based on outward appearances. Being very physically disabled and usually non-verbal, the untested assumption follows hat we are profoundly learning disabled, and that there is little or no point in teaching us. I’ve even read a special school head teacher describe trying to teach a class of PMLD students to read and write as abusive.

Once you are yoked with it, the assumptions made about you are seen as certainties. So, the vast majority of PMLD classes in special schools follow a sensory curriculum, with not even a glimmer of expectation that you could learn to read or write. For instance, when we had a book read to us, we never got shown the words because there was no possibility we could ever read for ourselves. It was a self-fulfilling prophecy.

So, given this was my experience at special school, how have I written this essay? When I was seven I was visited by an education expert who suggested to my mother that I could be taught basic literacy using my eyes like a cursor. Through holding up a series of letters of the alphabet in front of me, she realised I could correctly look and select the initial letter of my name and I had the potential to learn more.

The PMLD standards conclude their definition by stating ‘children and adults with PMLD have more than one disability, the most significant of which is a profound intellectual disability.’[2] Yet when I entered education, I was given the label PMLD with no assessment of my learning capabilities. And there is a reason for this: children with severe physical disabilities usually haven’t settled on an access method. In other words, how we are going to demonstrate even something as simple as yes and no is yet to be firmly established.

We can’t be assessed because we can’t demonstrate our understanding. We don’t all have Profound and Multiple Learning Disabilities; we have Profound and Multiple Access to Learning Disabilities. We can’t use the label until we have established the level, or not, of learning disability and this can’t be done until we have established access to demonstrating that.

My own journey to discovering a reliable access was not straightforward. Prior to using my eyes, I tried a variety of methods including a switch, which I struggled to press at a particular point of time; and an auditory scanning book, which required me to listen to options and smile for the one I wanted. Smiling in a set time was also difficult and who wants to smile to say they have tummy ache? Another big drawback with any communication system is that predetermined word choices will always be restrictive. For example, using my auditory scanning book I could not say I was frustrated, because the negative feelings words I was offered were limited to: sad, angry, tired, bored, scared and ill.

Once my access to learning was found I was ready to be taught. But at my special school, like many around the country, PMLD pupils are only offered a sensory curriculum. So, my mother took me out to teach me to read and write at home.

On hearing this part of my story many people remark on how wonderful my mother was to do this. But, they are missing the point: this is not wonderful, it’s outrageous. Imagine the headlines if able bodied children were looked after at school and had to be removed from school in order to be taught!

After a year and a half of a couple of hours of literacy a day, I started to spell out everything I wanted to write and say. Thus aged 9 I had my first free conversation with my family in which I could say everything in my own words. It unlocked my voice and enabled me to demonstrate clearly what I had learnt and understood. The PMLD label no longer fitted, and I joined my local mainstream school.

In the summer of Year 5, whilst recovering from being seriously ill I knew God had given me extra time to make a difference for children like me in education. All my life I’ve known the presence of Jesus with me, comforting, sustaining and now challenging me to use my newfound voice to make a difference. So, I started a campaign for all children to be taught to read and write regardless of their educational label, and my message gained traction in the press. This led to me writing my story in my book ‘Eye Can Write’.

By the time my book was published in 2018 I realised that in order to thrive my campaign needed to be seen as bigger than me, and I founded my charity Teach Us Too. Whilst using my story as a catalyst for the campaign has been useful for making professionals think about what is possible, there has also been the reaction that I am an exception, and therefore my story alone can’t be used to argue that all PMLD students should be taught to read and write.

My argument has never been that everyone labelled PMLD is capable of writing a book and studying GCSE English. But by denying literacy teaching to a whole cohort, you never find out what they may be capable of. For some it may be very simple three letter words, and for others it may just be exciting to be taught.

Recently I heard about James who went through the whole education system not being taught to read and write, only being taught literacy in his early 20s. He’s motivated and really enjoying learning for the first time. For my campaign to be successful I needed people to look beyond my story and realise the relevance of literacy for others like James.

As I’ve got older, I have also appreciated how much being literate makes me and my disabled friends independent. The education system puts much emphasis on independence, but for severely disabled people like me it is being literate, expressing ourselves and spelling out our preferences, which gives us the greatest autonomy. For example, my friend Will was pushed to Morrisons with school in order for the TA to pick items from the shelf, put them on the conveyer belt, pack them and pay for them, because Will can’t physically do that for himself. True independence would have seen Will using his eyegaze computer to do online shopping.

Using the principle of the least dangerous assumption[3], it is far more damaging for pupils not to teach them to read or write, than it is to teach them literacy. As one teacher of a PMLD class found, when she started out with the assumption ‘that children with PMLD understand everything but cannot yet tell us’, after a year of teaching not one of them fitted the label PMLD[4].

To conclude I leave you with my poem PMLD which both describes the experience of nearly all pupils labelled with PMLD, and my vision for what is possible when we start from a place of high expectations.