Today (1 October) charity Wouldn’t Change A Thing launch their new book, detailing the full, positive lives of people with Down’s syndrome and their families.
The book has been launched to support new and expectant parents, and maternity units in the UK. Using quotes and photographs of people with Down’s syndrome and their families, the book seeks to dispel the fear that can consume new parents upon receipt of a diagnosis.
Created by Wouldn’t Change A Thing (WCAT) in partnership with the Australian Celebrate T21 network, the charity is a parent-led organisation that exists to correct negative, outdated perceptions of the capabilities and quality of life of people with Down’s syndrome.
After Jamie McCallum, who is now chairman of WCAT, created a video for World Down Syndrome Day 2018 he knew he had to continue this mission.
#WouldntChangeAThing went viral with thousands of parents getting in touch to share their experiences.
Along with the families involved in the video, Jamie set up WCAT. The organisation now has 500 members, all supporting projects to change perceptions and stereotypes of Down’s syndrome around the world.
The book was inspired by a similar project by Stephanie Rodden, who produced the Australian version of the book and leads the Australian Celebrate T21 network.
Running from young babies right through to adulthood, the book includes 61 families and their positive experiences of life. Four inspirational adults from around the world conclude the book, which is available to buy from today.
All photographs in the book were provided for free by 56 photographers working throughout the UK. Each purchase of the book will fund a book for a new family with a child with Down’s syndrome.
The book itself has a personal connection to each person who worked to make it a reality.
After receiving thousands of messages in response to his viral video, Jamie McCallum, chairman of WCAT, wanted to urge more people to think about the future differently. Jamie’s daughter, Rosie, features on the front cover of the book.
“We had so many messages of how it had changed something for them, changed their perceptions, made them go ahead with pregnancies they weren’t going to go ahead with or thinking about the future differently,” remembers Jamie. “It made us realise that actually it was more than a bit of fun.”
Since the video was released WCAT have worked on multiple projects, but this will be the first in print which Jamie feels embodies the mission they are trying to achieve, he says: “We raised enough money over the last year to put the book in the hands of every new parent in the UK who has a child with Down’s syndrome.
“It’s the book we all wished we had, so it’s been designed in that way.”
At a time when medical information can often seem negative and overwhelming, the book will be a lifeline for some new parents.
“You’re handed leaflets from medical professionals and Google isn’t always your friend at that time, and no one’s able to really – certainly not in bullet points and leaflets – encapsulate the joyful family life it actually is like,” explains Jamie. “Normal family life is what I experience and we found the best way to articulate that is visually, through the lens of a new parent.”
While Jamie acknowledges that, as with any medical condition, there are pros and cons, he understands it can be difficult to highlight the positives, of which there are so many.
“The pros are very hard to articulate, you can’t just bullet point that and that’s why we’ve chosen a very visual medium,” emphasises Jamie.
“The only text that is in the book is every family has been able to create their own or use a quote they think represents the way they feel.”
After his daughter was born it took Jamie months to get his head around her diagnosis – time he wishes he had spent solely celebrating the new addition to his family.
He says: “Knowing what I know now I would have made the most of that: you’ll never be able to short circuit that whole process, but I hope we can go some way to ensuring people can just be happy and enjoy their new baby.”
Dispelling the negative stigma around Down’s syndrome has always been a focus for WCAT. Lynn Murray’s daughter, Rachel, features in the book.
“I think it is really important to raise positive awareness because we have national pre-birth screening programmes, so [the charity] is something really good to support.”
As a mother with lived experience of having a child with Down’s syndrome, Lynn feels it is important to show both young people and adults the positives life can bring.
“Especially for new parents you are seeking information and materials, for someone to hand you something full of colour where people are getting on with their lives and flourishing, it’s just something you can pick up whenever you feel you need a wee bit of comfort,” recommends Lynn.
Lynn believes the book is a great resource for times when it can be difficult to reach out to others, she says: “You can feel quite heavy about it, so it shows you will come out the other side, you will get on, and you’ll have a normal life.
“It’s not preaching at you, it’s just showing people in a sort of actual normal habitat.”
The book brings to life the different aspects of life with a child with Down’s syndrome, from the perspective of parents.
“It’s by parents for parents,” emphasises Lynn. “Peer information is important because it’s different from an organisation telling you, this is coming from people who have been through the same experience who want to say to you it’s fine, it will be OK.
“It’s almost like stepping out of a dark place into a colourful life.”
Like Lynn, Eddie McConnell, chief executive of Down’s Syndrome Scotland, felt colour was added to his life when his son Finlay was born. Finlay, who is now 16, has Down’s syndrome.
“I wish there was this kind of movement around when Finlay was born, but we’ll catch up,” explains Eddie. “I’m a great admirer of the work WCAT are doing and the fact that the driving force is really the families themselves, anything I can do to add some weight to that and get behind them, I’ll do.”
Eddie has been a supporter of the book since he first heard about it, with a personal and professional connection to it’s mission. He feels there should be more support for families in what can be an enormously challenging time.
“There’s some great examples of parents being supported, but they’re not universal,” states Eddie. “There’s still too many stories of parents not getting the best response at the time that their wee one is born.
“We’ve just got to do our bit to make sure support is universally available, it doesn’t matter where you’re born, what part of Scotland you’re from, you should get the same experience of birth and it should be a proud, happy one.”
Since Finlay was born, Eddie’s family has grown in a positive way because of him, he says: “We call Finlay our bonus ball because he came at the end of our family, that positive narrative is something we really need to push and make sure that’s something families hear from day one, because there is a lot of people to give that support from day one.”
He believes that publishing the book from the point of view of parents goes lengths to show that this support exists, and has more strength to it that acquired information from someone else.
“Nothing can beat a family who have lived knowledge from their child who has Down’s syndrome,” says Eddie.
Now, Eddie would advise families who are welcoming their baby into the world to take it day by day, and be assured that there is help available.
“They’re almost certainly be receiving a huge amount of information, take the time to process that information, but know that there are people who have lived experience with a child with Down’s syndrome who are there for you to reach out,” adds Eddie.
As the book is put in the hands of new parents who’s children have Down’s syndrome throughout the UK, awareness and positive perceptions will continue to grow.
Robert Wilson, a freelance photographer, worked on the book, photographing his niece, Julia.
“My sister adopted a child with down’s syndrome a few years back and she told me about the charity,” recalls Robert. “I got involved with WCAT and I was also able to get my sister’s little daughter, Julia, into the book.
“There are images from all angles to show Down’s syndrome at various stages of life and how people can have a normal life like everyone else, so I thought it was a great project we could do.”
Since Robert first heard that WCAT wanted to created the book, he has watched it grow, he says: “It’s amazing to see the book today, it’s a fantastic piece of art, the project started from people being asked on Facebook if [they wanted] to be involved and it grew and grew.
“Hopefully we are one day going to take it to the United Nations where they can see it as well – the project has such a good scope, this isn’t the end, it’s only going to grow from here.”
Robert believes the book will help to remove negative stereotypes and show new parents that their child will have a normal life.
“It’s absolutely essential, it’s not only to show the concept of ‘this is another way of looking at someone’, it’s showing ‘this is just another person and here’s the life they’re hopefully going to have’,” explains Robert.
“I’m sure a lot of people will say I hope I’m in that one day, and that’s what I hope the [future] will be.”
The Wouldn’t Change A Thing book is available to purchase from today (1 October). Each book that is sold will fund a free book for a new family.
Featured image credit: Robert Wilson Photography