Being a campaigner is fun and hard work in equal measure.  So far this week, I have co-presented at a Communication Matters conference in Leeds, been to a reception at the House of Lords and written this blog post on the train – and it’s only Tuesday!

As the youngest delegate at the conference, it was nerve-wracking presenting to about 40 professionals, parents and AAC (Augmentative and Alternative Communication) users; but when one of the audience says it is the best presentation, it makes the journey worthwhile.

When I started to spell everything I wanted to say, I never imagined that I would give a speech at the House of Lords.  But, thanks to the Diana Award, that is exactly what I have just done!  It was good to meet Penny Mordaunt, Minister of State for Disabled People, and make new connections for my campaign; and once again by inspired by the young people who are recognised by the Diana Award.

You can read my speech here:

I received the Legacy Award in recognition of my Teach Us Too campaign for all children to be taught to read and write regardless of their label.

It was an immense honour to receive this award remembering Princess Diana, who so often went out of her way to show solidarity with those society would rather forget about.

Her legacy award has given me a stronger platform on which I am a voice for the voiceless.  My dream is a special education system where academic competence is assumed, rather than assumptions about academic ability based on physical disability.  Unfortunately, current education policy is tipping the other way, with proposals from the Rochford Review that schools will no longer need to report to government on children labelled with Profound and Multiple Learning Difficulties (as I was).  This is against a backdrop where special schools are increasingly opting for non-subject specific learning, ie literacy teaching is no longer required.  This lack of accountability signals that the education of children like me is of very little importance.  Imagine Ofsted was abolished in mainstream education, because no-one really cared what children were taught in schools.  Yet this is what is happening to children like me in education.

If my mother hadn’t removed me from special school for a few hours a day to teach me to read and write I would not be able to write this for you today.  For a non-verbal child, learning to read and write is not just a life skill.  It unlocks our voice.  It gives us life in all its fullness.  I am not unique.  There are more children like me in special school who need an education system that believes they are worth teaching too.  Then my story of learning to write and communicate will not be so unique either.

I don’t have much time left, so I am asking you to get behind my campaign and use your influence to ensure there is accountability and aspiration for children who are often marginalised and judged.

My body is very weak, but my desire to make a difference for children like me is very strong.

With Diana’s legacy I am building my own.