The DAPPLE project hasn’t come out of nowhere. It has not been dreamt up by academics sitting at a solitary university desk. It has been built on sighs and cries, on many people’s questions, leading to wishes and demands. More than anything, this project has come out of the voices of people with a learning disability and their families and carers. They are our foundation.
Over the past decades, we have learned so much from people. We have seen how terrible it is when things go wrong, voices are not heard and needs are not met. But we have also seen how people can get it right, and those stories inspire us. We want to get it right for everyone.
Victoria Willson, who died in 2013, was the inspiration for our previous project (in fact we named it after her, the Victoria & Stuart Project), leading to the development of an end of life care planning toolkit. But it was her mother Jean who championed Victoria's life and told her story.
“When a death is good,” Jean said, “then a lot of the pain goes. And Victoria had a very good death. I want it for everybody. It helped us as a family, and I know it helped the support workers. Because they tell me now, the ones that are left, they say, ‘Our life will never be the same again, working with Victoria and seeing her through that time – we’ll never be frightened of death again.’ Victoria has left a huge legacy, and that is one of them.”
Six months ago, Jean came to the launch of the toolkit that bears her daughter’s name. She whooped and danced. She was delighted about the DAPPLE project, this time cheering us on from afar – now in her 80s, after years of being our advisor and co-producer, it was time for other families to take this forward. “But”, she warned us, “you better get it right. We’ll be watching you!”
Now, to my huge sadness, it is time for us to remember Jean Willson. She died a month ago, in her bed at home, after a happy day out watching the London Christmas lights on an open-topped bus – she went to bed and simply didn't wake up the next morning. She had been unwell and in hospital, but still, it was a shock. Jean was a colourful force of life who simply seemed unstoppable.
I have known Jean since 2014, when the Palliative Care for People with Learning Disabilities (PCPLD) Network gave her the Linda McEnhill Award for outstanding end of life care provision. Since then, Jean and I have judged other nominations for the Linda McEnhill Award, worked together on developing project proposals, and wrote a book chapter together.
Whenever I needed help or advice from a family perspective, or understand the perspective of people with profound and multiple disabilities, Jean was there. She always said YES, she’d help.
It was standing room only at Jean’s funeral service yesterday, with hundreds of people crowded into the church to say goodbye to her as Victoria’s older sister topped the bright orange coffin with Jean’s fun yellow wig-hat and funky glasses. It came as no surprise that Jean had planned her funeral carefully.
Memories were shared, so many stories were told. The way Jean campaigned, together with Victoria, for a better life for people with profound learning disabilities. They fought for accessible toilets in the “Changing Places” campaign. When as a young child Victoria was placed hundreds of miles away from home, they campaigned for her to be supported in her own neighbourhood. Later, they campaigned for Victoria to be able to live in her own flat with 24 hour support – the first profoundly disabled woman to do so. There is a very long list of organisations and campaigns Jean was involved in. No wonder she received an OBE, and no wonder the church with the orange coffin was full to bursting. There were tears but also much laughter, because of the sheer fun and joy everyone remembered about Jean.
I am so sad that Jean won’t be around to see the outcome of the DAPPLE project, which she saw as one of Victoria’s extraordinary legacies. But let me tell you, Jean: our work is YOUR legacy too. You have truly made life better for people with learning disabilities. We cannot thank you enough. We will miss you.
See here for the video of Victoria's Story
Written by Professor Irene Tuffrey-Wijne (Project Lead, Kingston University)
Comments