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  • Jo Frater

An Inclusive Future Starts With Inclusive Language.

Updated: May 10




As Confidance's Founder and Artistic Director, my career has been spent evolving a practice inspired entirely by inclusion, ensuring that all people can join in the dance. The difficulty is creating a practice that is open, flexible, and intuitive in order to meet people where they are at, whatever their learning or physical ability, whilst being rich enough to inspire and challenge them. Confidance has three core strands – education, community and professional – which aim to cultivate a pathway for people with and without learning disabilities to have a life-long access to dance and have powerful creative voices within the arts sector.


As a sibling to a brother with Down’s Syndrome, I was born into a life which accepted and valued difference from the get-go. I haven’t had to learn about inclusion, I have lived it. Inclusion is for everyone – all people benefit. Inclusion is ethos and empathy, not charity or hierarchy. A lot has changed since my brother and I were children. Yet, disturbingly, a lot has not.


Last summer, when my son was born, it was immediately clear to me (while health professionals shifted from foot to foot, gingerly talking to me about blood tests) that this wise little soul who had just arrived earth-side also had Down’s Syndrome, along with green-grey eyes, possessing the look of authority of someone who has been here before.


Whilst new to motherhood, I was not new to Down’s Syndrome. I know all about the medical diagnosis and thankfully, from a career spent developing an inclusive dance practice, I also know about the social model of disability. The social model of disability says that:


‘people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people's attitudes to difference, like assuming disabled people can't do certain things.’ (Scope, 2022)


Once the small boy and I were home, we had regular visits from a wonderful midwife for the first few weeks and when this came to an end, we were handed over to a Health Visitor. A trained professional, who came into my home, entering the delicate, precious baby-bubble and said the following about my four-week-old son;


‘Don’t have high expectations….take each day as it comes’.


Jesus wept.


I lifted my jaw up off the floor and took a slow measured intake of breath as I considered my options.


Option A) Tell them to f**k off back to the Dark Ages.

Option B) Burst into angry tears at the awfulness of their attitude, coupled with the sheer audacity of saying it to me in my own home.

Option C) Educate and inform.


Ugh. Option A seemed so appealing.


And exhale.


‘Ah’ I said. ‘I will have to stop you there. I will absolutely have high expectations of my son. For the record, I have colleagues who have Down’s Syndrome, who are paid professional dance artists. You have a very outdated view of the world’. I gave her some literature that had been sent to me from Positive About Down Syndrome – a charity who challenge outdated perceptions and attitudes - ‘perhaps you would like to take it away and read it’.


I couldn’t stop thinking about that interaction. I was really angry and deeply disappointed, but I knew with all certainty that what they said was wrong. What about new parents who don’t know about the social model of disability, who don’t have a career embedded in inclusion, who don’t know anyone with Down’s Syndrome, who would, understandably, take the advice and opinion of health care professionals as gospel?


Don’t misunderstand me. I recognise and value the importance of the medical profession, but that health visitor has not been the only one on my journey so far to say ignorant, negative shit to me. There is much work that needs to be done. The impact of that sort of comment is so dangerous, damaging and long-lasting.


Exclusion starts in the womb. It starts with language.


Risk of Down Syndrome.


What about chance? Chance implies the same thing – without the negativity.


‘Risk’ implies danger. Something you don’t want.


90% of women whose unborn babies are diagnosed with Down’s Syndrome terminate their pregnancy. And these terminations can happen up until birth. (I highly recommend checking out Heidi Crowter’s campaign, and Sally Philips documentary).


Sticks and stones will break my bones, and words have more power than you think.


‘Don’t have high expectations…’


This statement underpins a lot of the everyday language I hear while at work, or out with my brother.


‘Oh bless’.


‘People with Down’s are always happy’.


Or talking about a person with Down’s Syndrome as if they’re not there. Not expecting them to understand.


It puts folks with Down’s Syndrome in the camp of ‘other’, of ‘them’, not us. Excluded. It assumes people can’t. This everyday language whilst seemingly harmless, and well-meaning, keeps us all separate from each other. And it shuts people out.


There needs to be real meaningful change. And people with Down’s Syndrome are all over it. You don’t need to look very far to find people with this syndrome in a multitude of careers and roles in life. Artists, political activists, husbands and wives, celebrities, drag queens, TV presenters, and that’s just off the top of my head.


I recognise that by the nature of labelling Down’s Syndrome at all, I am playing a part in this othering; I am identifying people by their medical label. But I would love not to have to. Inclusion is not perfect; it is a process. There is a lot of undoing to be done, and a lot of listening to folks with Down’s Syndrome and learning disabilities more broadly whose voices are not being heard. What we say matters. Some soul-searching is needed, some checking in with ourselves and our subconscious opinions. We will all be better for it.



Further Reading:


Scope, Social Model of Disability Information

https://www.scope.org.uk/about-us/social-model-of-disability/


Positive About Down Syndrome

https://positiveaboutdownsyndrome.co.uk/


Drag Syndrome

https://www.dragsyndrome.com/


Sally Philips, Actress, Presenter and Activist

https://www.youtube.com/watch?v=BhmIeSxXcxE


Heidi Crowter, Disability Rights Activist

https://www.bbc.co.uk/news/uk-england-coventry-warwickshire-57089602


George Webster, TV Presenter and Actor

https://disabilityhorizons.com/2021/10/george-webster-first-cbeebies-presenter-with-downs-syndrome/

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