Talking about difference: profound disability

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

"Sharing a sensory story can be a fun way to explore how someone with a complex disability might learn and have fun."

About the author

Joanna Grace

Joanna Grace is an international Sensory Engagement and Inclusion Specialist, trainer, author, TEDx speaker and founder of The Sensory Projects.

Consistently rated as “outstanding” by Ofsted, Joanna has taught in mainstream and special-school settings, connecting with pupils of all ages and abilities. To inform her work, Joanna draws on her own experience from her private and professional life as well as taking in all the information she can from the research archives. Joanna’s private life includes family members with disabilities and neurodivergent conditions and time spent as a registered foster carer for children with profound disabilities.

Joanna has published four practitioner books: “Multiple Multisensory Rooms: Myth Busting the Magic”“Sensory Stories for Children and Teens”“Sensory-Being for Sensory Beings” and “Sharing Sensory Stories and Conversations with People with Dementia”. and two inclusive sensory story children’s books: “Voyage to Arghan” and “Ernest and I”.

Joanna is a big fan of social media and is always happy to connect with people via Facebook, Twitter and LinkedIn.

Black History Month

Black History Month

Why celebrate Black History Month?

When we think about British history, most of us remember what we were taught in schools – Roman Britain, the Magna Carta, Henry VIII, the sinking of the Titanic and the impact on Britain of the World Wars. It’s all interesting stuff, but in selecting these for the curriculum, other things inevitably get excluded – things that may have more meaning and relevance for other sections of society who aren’t choosing the syllabus - such as the Black British community, for example.

Many school subjects seem to focus only on certain sections of society; like Kings and Queens for example, or important men of science, art or philosophy; and whilst there have been many thousands of people contributing to our society since records began, we often find a disproportionate focus on a narrow selection, (usually white males) often to the detriment of others. Black History Month aims to temper this bias by raising awareness of, and celebrating the enormous contribution that Black people have made to modern Britain. In the same way that International Women’s Day champions women, Black History Month does the same for unsung, Black people and their achievements. It was originally established in America in 1926 and they continue to celebrate it, but they do it in February!

Who gets involved?

Basically, anyone who wants to celebrate Black history, contribution and culture, not just in our own country but in the world as a whole; to global economics, science, culture, politics and the arts. If you can think of a subject, you can bet your bottom dollar that there will have been someone from the Black community who will have had a positive impact on it.

You may or may not have any Black families in your cohort, but you can still celebrate their enriching contribution to our country generally, now and in the past. Over the years, the focus of Black History Month has expanded to include the history of African, Asian and Caribbean peoples and their contribution to Britain’s ‘island story’. So, it’s also the perfect opportunity to visibly demonstrate your commitment and support to the wider agendas of diversity, equality and inclusion.

Theme for 2019

This year’s theme is “Black Migrations” which will focus on “the movement of African Americans to new destinations and subsequently to new social realities”. In the past, Britain played an enormous role in forcibly moving swathes of Black people through the slave trade and colonialism; but we also played a pivotal role in abolishing them. Our country has also encouraged migration through other means such as the Windrush scheme, and developed opportunities for migration through The Commonwealth. These have enriched our culture, academia and economy greatly, creating the multi-cultural and diverse society we pride ourselves in today, which has at its heart, the values of tolerance and an understanding of different faiths, cultures and beliefs.

Get a BHM resource pack

A resource pack has been created for the 2019 campaign and this is the first year that an educational resource pack has been produced. It aims to help organisations facilitate and promote Black History Month within their own settings and beyond. You can register to get your copy here: bit.ly/bhm-pack. There is a small fee (£49.50) but the resources include posters, a timeline, information on many Black icons who have shaped the world as we know it, as well as worksheets and assembly notes. If you don’t want to buy the pack, there is a lot of information for free on the official website at: www.blackhistorymonth.org.uk which has more than enough material to assist you.


How to get involved

Celebrating an integral part of our society is fun – look at the success of the Notting Hill Carnival if you want to see what can be achieved when people come together to celebrate themselves and their culture. Here are a few ideas you could try to catch a bit of the magic.

  • Set up your own carnival on the theme of ‘Black Migrations’ – think about where people have come from and what have they brought to British culture that is now an integral part of who we are
  • Try some African food – there’s such a lot on offer. Why not try some sweet potatoes, yams , piri-piri, alloco or jollof rice? You’ll find lots of interesting recipes on the internet
  • Research and celebrate the work of your own local Black heroes
  • Learn some African or Caribbean dance
  • Create a circular hands mural using handprints of different skin colours to represent inclusion
  • Talk about some famous (and ‘not-so-famous-yet’) Black role models. Most of us have heard of Martin Luther King Jr., Rosa Parks and President Obama – all famous Black African Americans. But remember to include people from Black British culture and all walks of life too; from writers to rappers, inventors to industry leaders, poets to Presidents. You will find many ideas on the BHM website, but how about Mo Farah (double, double Olympic champion), Ignatius Sancho (the first Black British voter), and Joan Armatrading (first female UK singer to be nominated for a Grammy in the ‘blues’ category) to name but a few
  • Purchase the BHM resource pack and follow some lesson ideas, adapting them for your children
  • Hold a cake sale and decorate the cakes with different flags to show where people have come from
  • Celebrate diversity and inclusion – make a giant poster showing what each student and staff member likes and appreciates about themselves and/or their own culture – it can be words or pictures or both
  • Talk about the Windrush generation and the importance of their contribution to life in Britain after the war – you may even know some people you could invite in to talk to the children about their own experiences

Above all, have fun! The celebration spans the whole of October, so there is plenty of time to get involved in numerous ways.

Get your BNM resource pack on: www.blackhistorymonth.org.uk

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