The Down’s Syndrome Jersey Group have put together the booklet, This Is Me, a collection of personal experiences written by people with Down’s syndrome and their families, to give an insight into the lives of people living with the condition.
The group acknowledge that there is still work to do to ensure that people with the syndrome have many of the same life chances as others, and want to shift perspectives away from outdated and inaccurate stereotypes.
Dr Alice Bennion, one of the group’s committee members, said: ‘We hope these stories raise awareness, inspire and show the reality of life with Down’s syndrome. The stories are written honestly from experience and we are so grateful to all the families and individuals who got involved and shared their stories with us.’
The stories have been brought to life through the lens of professional photographer Dasa Wharton, who has pictured all those involved in places of importance to them, including St Peter’s Primary School, Beresford Street Kitchen, Jersey War Tunnels, Wheatlands Golf Club and many places of beauty across the Island.
Mrs Wharton became involved in the project through Dr Bennion, who is also the Jersey Child Care Trust’s programmes and inclusion manager and knew the photographer’s work from previous projects.
‘My brief was to take natural portraits of families and children who live with Down’s and to demystify it, show what it means to live with the condition and to show the reality of people with it in Jersey.
‘My starting point was to ask people what places were important to them and where people like to go and like to be as a family,’ said Mrs Wharton. ‘The families didn’t do anything different for the photos and because you can’t set anything with children, I had to be led by them.
‘It was a good exercise for me, to be on my toes and to follow the lead of the children. And I listened to the stories of the parents too, which was very inspiring.’
The photographer also managed to undertake and complete the assignment under coronavirus restrictions. ‘It was a fantastic project and we still did it during lockdown. All the photos were taken outside, except Beresford Street Kitchen, and it was fantastic to meet the families and the children,’ said Mrs Wharton. ‘I hope the booklet shows how the charity is trying to raise awareness and saying: ‘This is us, this is me.’
The booklet can be accessed online at tinyurl.com/vywrbhvv or by scanning the above QR code.
lFor more information on the charity and local information and contacts visit the website downs-syndrome.org.uk.