Talking about difference: profound disability

In our settings, we explore many differences with the children we support: we talk about the changing seasons, we explore different cultures and ethnicities, we celebrate festivals and we talk about growing up and growing old.

Difference is a part of life; a very wonderful part.

This is my second article in a series of four, talking about difference through the lenses of disability, neurodivergence and social and emotional wellbeing. Difference is always immediately relevant to children, because all children are different. When we learn to recognise and understand difference in others, we are better equipped to recognise and understand our own differences. Teach children to embrace difference, and you teach them to embrace themselves.

My first article talked about children with Down’s syndrome. It is very likely that the children in your setting have, or will, encounter someone with Down’s syndrome. In this article, I am going to be talking about children who have profound and multiple learning disabilities. It is much less likely that the children in your setting have encountered someone with a profound physical disability, but it is no less important to talk about them.

The reason the children in your setting are unlikely to have met someone with a profound and multiple learning disability is because they lead hidden lives. A long time ago these people would have been locked away from society in institutions on the outskirts of town. Today, the institutions have closed but we do little better than before. Take toilets for example: Imagine if I suggested to you that you take the children in your setting out to a place that had no toilets? You would be unlikely to go. Very unlikely!

Children with profound and multiple learning disabilities cannot use disabled toilets, they need a Changing Places toilet – this has a large changing bed and a hoist to lift the person onto the bed. Over a quarter of a million people in the UK need a Changing Places toilet, but they remain few and far between, even hospitals do not have them! Consequently, the families of people with profound disabilities are less able to get out and about. We may think of these lives as being very far removed from our own, but a twist of fate, and they could become ours. We are not so far away from their reality.

Imagine being the parent of a child with profound and multiple learning disabilities and taking them to the supermarket. Imagine all the logistics this would entail, how much harder it would be than your regular trip to the supermarket. Now imagine that when you get there, people stare at you, parents pull their children away from your child, children make faces of disgust at your child.

This rejection of your child is by no means the biggest burden that you have faced, but you are braced for the big attacks and are ill prepared for the small ones. It is the straw that breaks the camel’s back, not the load it was already carrying.

Preventing that hurt is simple, because it comes about through a lack of understanding. People stare because they want to learn more. Parents pull their children away because they understand staring is rude (but in that pull is the message that the other child is something bad). Children make faces because they do not know what they are looking at. Once people understand (adults and children) they will respond to people with profound disabilities in much the same way as they respond to anyone else.

As we did with children with Down’s Syndrome show the children in your setting some pictures of children with profound disabilities and ask them to describe what they see. Accept answers about clothes and hair colour, etc. in the same way that you accept answers about twisted limbs and mobility equipment. Help them to shape their answers so that they are factual not judgemental, e.g. if a child says “Her legs are wrong,” shape this to “Her legs look small, or twisted, or have a support on the outside.” They are not wrong, they are different.

My own son is five. He has been helping me with my work with children with profound disabilities since he was 18 months old. He talks about them as “my friends whose bodies do not work properly.” He is fascinated by their differences, not afraid of them. I am always clear with him about what his friend’s bodies can and cannot do, and what they are interested in. Together we find ways they can play together and everyone has a lot of fun.

Engaging children’s curiosity and wonder is a great way to approach differences that are too complex for them to fully understand yet. I write sensory stories for children with profound and multiple learning disabilities: these are concise narratives in which each sentence is partnered by a rich and relevant sensory experience. Sharing a sensory story can be a fun way to explore how someone with a complex disability might learn and have fun.

Explain to the children that the children with profound disabilities they have seen pictures of, often have sensory impairments as well as mobility impairments. Ask them, “If you couldn’t see a picture, how could I show you what was happening in a story?” See if someone says “make a noise” or “touch something”. Share a sensory story to gain an insight into how much fun it can be to learn in a different way.

End by asking the children if they would be interested in getting to know someone who had a profound disability. What might they do if they met someone with a complex disability when they were out and about? Teach them to smile and say hello. When you do this, you turn the straws that break the camel’s back into lifelines of hope for a more inclusive, friendly world.

For more information about Changing Places see www.changing-places.org
For more information about Sensory Stories see www.thesensoryprojects.co.uk 

For more information about people with profound and multiple learning disabilities go to www.PMLDlink.org.uk