New mum, Becca, has collaborated with design studio Bear and Pear to create a set of digital language cards to change the language used around Down syndrome. She shares her story here:
My partner Thom and I are parents to one-year-old Arthur. Arthur was diagnosed with Down syndrome at birth and has quickly become an inspiration to me. He is bright, sociable and very good company. Living with Arthur has highlighted the amount of inappropriate language that is used around Down syndrome on a daily basis. So, I decided to write an open letter to try and make a change in my local community. I realised that people wanted to say the right things but often didn’t know what they were. I too was one of these people only a year ago.
I always thought I was considerate and appropriate in all the language I used, but once sat on the other side of my son’s diagnosis, I realised how wrong I was. I now realise that the perceptions I had around Down syndrome had been strongly influenced by the inaccurate subconscious messages of everyday language that has constantly been fed to me and is still being fed to me. Only with experience have I realised the extent of which that language is used daily – from friends, consultants, health visitors, midwives and strangers.
Following the success of my open letter, I decided to create these social media cards in the hope of encouraging more people to think about their language.
In three days of the campaign being launched, with support from the Down’s Syndrome Association, the digital cards have been shared on social media more than one thousand times and gained international interest. One reader wants to translate the cards into German.
Consultants, doctors, paediatric nurses, and sonographers across the country are sharing the campaign via Twitter, recognising the cards as an important tool for everyone to use.
Following the digital release, I am now in discussions with Royal Cornwall Hospital Trust to display these cards on all of their public screens in all departments to raise awareness and understanding.
October is International Down Syndrome Awareness Month, so now is the perfect time to raise awareness around language, and highlight the difference small changes can make to everyday lives. I am delighted with the initial response and excited by the massive potential these cards hold.”
An excerpt from Becca’s Open Letter…
As my son approaches his first birthday, I wanted to share some of my journey with you. It has been a fast track, deep water, learning curve for me this year. This is a long letter but I would love you to read to the end…
With my son’s arrival, I have witnessed my world through a new lens. Not only as a mother but as a mother to a little boy with Down Syndrome. I have suddenly felt first-hand the importance of considerate and appropriate language.
Language is very powerful. Language does not just describe reality. Language creates the reality it describes.
I want you to know from the bottom of my heart, that I know absolutely no-one meant any malice or hurt by any of the comments below, that they were all said with love, but some of these comments have been painful. I have learnt so much this year, and I want to share with open arms, and the invitation of open conversation if you wanted it, some of the things that, for us, could have been phrased better.
I am writing this in the hope that after reading it my son and I will hear some of these things less often.
I spoke to the hospital only last week when I got a standard letter for him. The first box on the page was titled ‘Problem’ and next to this box it listed Down Syndrome and then Congenital heart disease (Cardiac Failure at birth). Yes, the Cardiac failure was a problem, but his Down Syndrome is not. It is a part of who he is. What will he believe about himself if he grows up seeing ‘problem’ by the person he is? By the very make up that he is. On making the hospital aware of this they apologised and said this was indeed an error on their part. I have just found out today that the forms are being changed immediately. This is the positive proof to me that things can change for the better.
What I have learnt this year overall is that every single person is an individual. It is about getting to know the human being and celebrating that human being.
To try to see past anything that divides us. At the very core of every person is a human being who has feelings and needs and deserves to have their place in the world at the table of life.
We all have something unique to offer to others.
I also want to make clear that if people sometimes slip up and say something that isn’t the most positive choice of words, it’s ok, as long as they are trying. The last thing I would want is for people to feel awkward around me, or afraid of ‘getting it wrong’ and I hope they will also bear with me when I try to (sometimes smoothly, and sometimes more clumsily) correct any language that perhaps doesn’t make my son feel that he has his equal place in society. I have learnt all this over a year, so I understand that it isn‘t something people can learn overnight. And yes, I am still learning.
This is all said with love, I want to say that again, as I know all the above comments were made from a place of support and care. Unless someone has had lived experience of a situation how can anyone be expected to know exactly what to say and what not to say, which is why I wanted to share this with you, with love, with understanding, and with hope for the future, for language to positively evolve.
I would love you to come on this journey with me.
They are a resource for parents to use. I made them for me and my friends and my community, but now I hope they will be used by other parents, hospital staff, speech therapists, physiotherapists – everyone, anyone, who can then put them on their own social media or print them off in whatever format they may need to help share and inform.
The digital language cards are available to download, there is also a PDF of all the cards to print, a poster of all the cards for noticeboards and also posters of the individual cards to raise attention and share the website.
Becca’s digital language cards are free for anyone to use and share. They are available to download now via www.languagecreatesreality.com
Learn more about the background to the project by reading the blog from the Down’s Syndrome Association. http://bit.ly/mum-launches-new-language-cards
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