New mum Becca approached us as she has designed a range of digital social media cards. She wants to help share with people the terminology she would like to see used when talking about her son Arthur. The cards are available on our website for people to download and use to help spread the word. They are also included in our Tell it Right® digital information pack.
Meet Becca…
Becca and her partner Thom are parents to one-year-old Arthur. Arthur was diagnosed with Down’s syndrome at birth and had open heart surgery at three months.
Before having Arthur, Becca admits she didn’t know very much about Down’s syndrome.
‘I thought I was considerate and appropriate in all the language I used, but once sat on the other side of Arthur’s diagnosis, I realised how wrong I was.’
Lockdown gave Becca the time to reflect on the last year and she decided she needed to make a change.
‘I have realised that any issue I thought I had with Down’s Syndrome did not come from within me, it was the 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 – it is daily. From friends, consultants, health visitors, midwives and strangers.’
So Becca decided to send an ‘Open Letter’ to her friends and family. She realised people wanted to say the right things but often didn’t know what they were. She’s keen to stress what she says is only ‘her’ view, but received such positive feedback from the letter, she felt compelled to make it her mission to spread the word further.
Here is an extract from Becca’s Open Letter…
Dear Friend,
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.’ – Desmond Tutu
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.
Following the success of the letter, Becca decided to make the social media cards to try and encourage more people to think about their language. Working with her friends Bear and Pear together they came up with a fun and unique design for the cards. She hopes new parents will download them and be able to use them in a similar way too.
‘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.’
So that is the background to why this project was created but what about the person who helped inspire it.
Meet Arthur…
‘Arthur has quickly become an inspiration to me. His affable, easy going nature is something I aspire to emulate more of in my life. He makes me laugh daily with his laughter and curiosity. His little face brims with more joy than I have witnessed before.
‘He achieves all the challenges put in front of him with a grace, acceptance and good humour. He is bright, sociable and good company. He has blown my preconceptions about Down Syndrome completely out of the water. He has shone a light on my ignorance and helped to change it. He has made me look afresh at all humanity with less judgement and with more acceptance and celebration.
‘His existence has led me to learn Makaton and start a YouTube channel called Arthur’s Club which is for EVERYONE. It is a channel that entertains while encouraging communication skills through Makaton, and it features Arthur himself in every film.
‘He has been published in two books, and has done two national modelling campaigns.
‘He is fascinated by trees, his cat, water and birds. He makes me look at the world in a more positive light, and fills my soul with love…not bad for a little boy that has only just turned one.’
Visit our Pregnancy & Baby page to download the individual cards or click here for the handout version with all the cards.
