For almost a year now, Rachel Wright, Family Communications Co-ordinator at East Anglia’s Children’s Hospices (EACH) has been working on a participatory photography project called “The H Word”, designed to support families, raise awareness and tackle misconceptions about children’s hospice care. As part of Children’s Hospice Week 2019 (17-23 June), the parents involved will exhibit their work at the Whistler Gallery in Ipswich.
“I heard this word – hospice – and I just fell apart. For me, ‘hospice’ meant ‘my child’s going to die’. I said ‘No, no, no, I don’t want to be involved with a hospice’ – I thought this meant my son wouldn’t live through his treatment.”
If you work for a children’s hospice, it’s likely that the above quote paints a familiar picture. Anecdotal evidence, along with research amongst the general public, shows the word ‘hospice’ is a barrier – for families eligible for children’s hospice services, and for members of the public when it comes to having conversations about children’s palliative care. There is a huge amount of stigma and fear around the word – and this stigma may be contributing to the high levels of social isolation felt by many families who have a seriously ill child.
‘The H-Word’ is EACH’s attempt to address these misconceptions. By using participatory photography with a group of parents who use The Treehouse, our hospice in Ipswich, the project aims to show the realities of children’s hospice care, through the eyes of those who have first-hand experience. Through a series of photography workshops we have explored what EACH and the word hospice means to these five parents, how this may have changed over time, and how this can be expressed visually through photography.
The project started in October 2018, and has grown and developed over time – and in keeping with the participatory ethos this has very much been shaped by the group, who have been involved in planning and developing the project at every stage.
Feedback from the families who took part has been overwhelmingly positive:
“I feel privileged to have been a part of this amazing project. I am always grateful for opportunities to talk about my son and show how important and valuable his short life was. As a group I hope we have made friendships which will continue to grow and develop as we continue to support each other in the future. It’s been a very positive experience.” Charlotte Markham, The H-Word photographer.
“I have gained new friends and I feel like I have accomplished something for myself. I don’t get time to do a lot of that!! Also I love photography and to be given the chance of showing these pictures to tell a story means an awful lot.” Sophie Munnery, The H-Word photographer.
We’re delighted to be holding a public exhibition of the work created during the project at DanceEast in Ipswich this Children’s Hospice Week. The exhibition opens on Monday 17th June, and we’re hoping it’ll have a big impact on visitors, getting them thinking differently about children’s hospices. Along with the photographs, audio interviews with the participants will also be available, giving an extra layer of depth and understanding to the photographs and their significance.
The exhibition is a powerful, emotive and heartfelt depiction of life as a family using a children’s hospice. It doesn’t shy away from the difficult and challenging aspects of this, but also shines a light on the enormous positive impact children’s hospices have on families going through an unimaginably difficult time. Each of the participant’s stories and experiences are different, but the overarching theme is that children’s hospice care and support has had a hugely positive impact on their lives, and the word ‘hospice’ is not something to be afraid of. As project participant Louise Ormrod says:
“When I think of our children’s hospice I think of sanctuary, laughter and love. I think of living our life and enjoying it. I don’t think of death.”
See The H-Word exhibition at The Whistler Gallery, DanceEast, Jerwood DanceHouse, Foundry Lane, Ipswich, IP4 1DW, until 27th June 2019. Bring your smartphone/tablet and headphones to hear audio interviews with the participants as you look around. For more info including opening times, visit EACH’s website.
Can’t make it to the exhibition in Ipswich?
Head to www.each.org.uk/thehword to see our exhibition films featuring photography and audio recordings from each of the participants.
