Learning disabilities and death

A 15-minute film aimed at helping people with learning disabilities, their family and friends deal with the issue of dying has been released.

We Are Living Well But Dying Matters was written and directed by the Leeds-based charity Change. The film’s producer, the Dying Matters Coalition, was established two years ago by the National Council for Palliative Care to promote public awareness of a subject many people prefer not to talk about.

Change campaigns for equal rights for people with learning disabilities. The film was made by its workers Catherine Carter from Salford, her sister Joanne – who both have a learning disability – and Austin Bradshaw.
Both sisters had felt left in the dark when their father died in 1997 and Carter is aware of plenty of people with learning disabilities who feel they have not been properly informed by family, friends and professionals when someone close to them is dying.

“People don’t think we have feelings like everyone else,” she said. “They’re wrong – we feel sadness, we feel pain and they’re increased when we are not kept informed. And, of course, you can’t stop people dying, so by keeping people in the dark it just increases the shock when people die. In some cases it denies a person with a learning disability the chance to say goodbye.”

Making the film involved bringing together people with disabilities from across the north in small discussion workshops.

“We deliberately kept them small to encourage people to be able to speak up,” said Carter. “Also, whilst it’s a difficult subject we did not want people to leave feeling depressed and I think some of the enjoyment participants had from meeting up comes across on the DVD.”

In the film, people with learning disabilities stress the need to be informed when someone is dying, what they’d like to have played at their own funeral, what should happen to any pets they might leave behind and how they’d like to be remembered. The DVD also includes practical advice, such as how to employ a solicitor and write a will.

Carter believes that by considering death, people may be encouraged to focus on what they want to achieve in the here and now. In her case she has started to set up a business to help people with learning disabilities whose children have been removed by social services. Change has supported her after social services removed her two children in a case she is contesting.

“I hope as many people as possible access the film on YouTube,” said Carter, who also wrote the lyrics for the film’s final song.