Curriculum content for children and adults with intellectual and other disabilities. Independence? No, thank you. Autonomy? Yes please!

Peter Limbrick writes: Is independence ever a valid goal? In this article I want to suggest that it is not, and offer instead the pursuit of autonomy.  In my thinking this offers a better way forward for all of us as we grow from child to adult. Autonomy will add richness, meaning and value to the lives of people with special needs operating within a framework of planned dependence.

My younger brother had cerebral palsy. He learned to drink through a straw instead of needing someone to hold the cup to his lips.  I am sure I can remember him learning to pull his socks off when he was younger.  Both were new skills to be celebrated and both meant a little less dependence on others. But it was obvious to everyone he would never become independent in any real sense. At no time in his life could he brush his own teeth. He could not retire at night without someone putting him to bed.

How far will any person you know with intellectual and other disabilities become independent? Is it a valid word to use when we plan school and college programmes and classroom activity? Should we think instead of nurturing autonomy?

Autonomy means you get the drink of your choice when you want it, a choice in when and where to be undressed and by whom. It means getting your teeth cleaned with the sort of toothpaste you prefer and perhaps being involved in the choice of toothbrush at the supermarket. It means choice in the time when you go to bed, which pyjamas you wear and whether to have the light on or off.

The truth is that I am not independent either so my younger brother and I, when he was alive, were in precisely the same boat. Nor do I expect to become independent in the years I have left. I cannot cut my own hair, pull my own bad teeth out or mend the electrics in my car. Can you? At breakfast I am dependent on a poultry farmer, at lunch on a fisherman and at dinner on market gardeners and wine distillers. In preparing these meals I am dependent on workers in the gas, electricity and water industries – and then on well maintained sewers.

So where is my independence? Where is yours? You might be the most committed and brilliant parent, carer, teacher, nurse or psychologist but you will never make anyone independent, special needs or not.

But I value my autonomy and will fight for it to the end. I want to choose my hair style, opt for a dentist I get on with and go to a garage I have learned to trust. I want to choose how to have my eggs, whether to have sardine or salmon with my salad, which vegetables to have with my pasta and which wine to wash it down with. The autonomy I enjoy and strive to maintain sits very well within a life of dependence. And as a man who does not aspire to be an island, I celebrate mutual dependence on family, friends, colleagues, mentors and workers far and near. In this socially-connected interdependence we each take what we need from others and offer to others what they need. Isn’t this the oil that makes the world go round?

Some autonomy is possible in every situation in which we are not, and never will be, independent. We can, if allowed, make choices while we depend on others. This is guaranteed. Do you know any person, child or adult, with intellectual and other disabilities who does not offer something to someone else, who does not bring some benefit or pleasure to another person? No one escapes playing their part in this mutual dependence! (And would not a life of independence, if it could ever be achieved, be a total nightmare of social isolation?)

So, should we stop teaching use of drinking straw, pulling off socks, holding toothbrush? Absolutely not. We must continue to teach and practice every new skill that a baby, child, teenager or adult is ready to learn, whether the new skill is relevant to daily routines, communicating with others or the pursuit of pleasure.

But we might consider shifting the emphasis from unachievable future independence to the pursuit of autonomy and self-direction in the here and now. Would this change how we approach school and college programmes and classroom activity for children and young people with intellectual and other disabilities?  In my view it would release disabled children and adults (and the people supporting them) from a long, hard road on which they are never going to get very far and lead them instead into open parkland where self-esteem, dignity and personal value can blossom.

Mutual dependence is a very human characteristic without which no individual or social group could survive. It is based in relationship, communication, cooperation, valuing others and seeing what they might be feeling or needing. We find our natural home in a group with others and get reassurance and satisfaction from membership. We learn the direct advantages of getting on with those around us. The pursuit of autonomy puts these human characteristics at the heart of the curriculum from infancy and within the competence of every member of staff - using the natural humanity identified at their job interview.

Independence skills can be gained and lost. My brother lost the sock-pulling skill as he grew older and stiffer. I am aware of becoming less independent and more reliant on others as I age. This is natural. But it is also natural that I maintain my autonomy in this ‘third’ age. Perhaps in future years I will need someone to give me a bath. If my autonomy is respected, I shall be able to choose when to have a bath, who undresses me, which smellies to use and which of my boats to have with me in the bubbles.

I hope I have made a case for thinking more about autonomy and less about independence.  I suppose I could have put the argument in a human rights framework – the right to direct what happens to us even when we have very limited intellectual and physical skills. This self-direction should be limited only by the cognitive and communicative abilities of an infant, child, teenager or adult with intellectual and other disabilities and never by the interests and convenience of others. Being human, autonomous and dependent go hand in hand for every one of us.