Micheline Mason
Shining a light on inclusion

Incurably Human

Incurably Human - book cover

Introduction

As a good catholic child, born with a physical impairment, I struggled to understand the story of St Bernadette and the miracles at Lourdes. When a favourite auntie visited the grotto on my behalf, she brought me back a plastic bottle filled with water and told me to sprinkle it all over my poor little legs and to pray to Jesus to make me better.

Well, I tried to please her and my mum, did a bit of sprinkling and praying, but after a few nights of this, when not much improvement could be seen, I got bored and did something unmentionable with the water and one of my dolls. Somehow I just could not get behind the idea that there was something wrong with me that Jesus had missed on the production line, but could remedy at a later date. It didn't fit into my understanding of things, but at ten, I did not have the ability to argue the point.

Dripping Holy Water

A few years later, at my special school, I remember one of the care-staff loudly telling me that I should never give up hope because one day doctors would find a cure for my affliction, and I loudly told her that I did not want to be cured. I remember this incident because of the utter disbelief this statement caused amongst all the non-disabled people present, and the delight this statement caused amongst my disabled friends. The school decided that I had The Wrong Attitude and that I should indeed go to Lourdes so that Jesus, the Virgin Mary and St Bernadette could sort me out.

Curiosity persuaded me to join the Handicapped Children's Pilgrimage to Lourdes, mostly because it would mean flying on an aeroplane which, at the time, seemed unbelievably exciting.

Lourdes was full of ill and disabled people wanting to get better, supported by hoards of non-disabled people with the same idea. I found it utterly depressing. I started praying for non-disabled people to be cured, but cured of what? It was still hard to find the words.

Disabled people have a joke about Lourdes. We come out of the Holy Water with a brand new set of tyres for our wheelchairs. The joke often falls very flat when told to non-disabled people. It provokes the same baffled look as the one worn by the staff members in my special school. Nowadays however, a few people get it, and laugh with us.

Inclusion is a concept that is not easy to get, just like that joke. In fact, you have to get the joke to understand the real meaning of inclusion, especially as it applies to education and the Special Education System.

I am beginning to realise that ‘inclusion’ is not a definable state, but a set of principles, which can be applied to anything. It is not essentially about disability, but about building a sustainable future for all of us. The fact that inclusion is not our current reality is because of a system, or model of understanding the world which is mistaken. This model has been called the Cartesian Model which understands the world as a machine which is running down, a giant clock. This has led to the idea that we could understand how it works by dismantling it into its components, and those components into its components and so on. It is a system of thought which has led to specialisation, compartmentalisation, fragmentation, analytical thinking and related approaches to solving problems. This includes the medical model of disability or behaviour. I am a living testimonial to this mistake, as are many other disabled or segregated peoples. Together with my fellow victims we are able to give voice to the human effects of following this particular path. Therefore we will help create an explanation of what needs to change in our understanding of how the world works. Inclusion is an imagined future based on a worldview which could be called ecological, in which our interdependence is truly understood.

This book is an attempt to take the reader on my journey of discovery, starting from my childhood certainty that I was already fully human, and therefore not in need of a cure, to a much later understanding that all human beings are incurable at our core, and that the inclusion movement is this inextinguishable flame made visible. Each chapter is like the overturning of a stone along a path - my discovery of a small piece of a picture which will hopefully one day fit together into a natural pattern. As you read it, and when you have finished it. I hope you will realise that each one of you has come along a unique path of your own, not mine. Mine may only help you shed light on your own, and give you enough confidence to continue, and above all share your discoveries with others, so that the journey feels more like an outing with friends than a lone battle against the world.

This book is published by Inclusive Solutions and can be bought online from their website at www.inclusive-solutions.com/bookdetails.asp?ID=39.