Page 28 - Community Living Issue 31-3

conference report: bereavement
dealing with death, informed. Some deeply moving comments

illustrated how powerful and empowering
bereavement and loss the day had been for people:

“I learnt it is OK to show my emotions.”

“I learnt about being able to go to my
Everyone has the right to grieve for the loss of a loved one and dad’s grave and having a memory box.”
well-meaning attempts to protect people from the realities of “Thinking about mum and dad.”
death are misplaced. sue Pemberton reports
A quote from someone who helped to
organise the conference really sums up how
regular topic of discussion for These were jointly run by the self- a topic that can be upsetting or distressing
members of self-advocacy group advocates who were passionate about can, if presented appropriately, lead to a
a ReacT is how they feel when bringing information to others, and very positive, engaging experience:
someone they knew or loved dies. confirming that it was OK to talk about
Others often try to protect them from your loss and experiences. “What was surprising was that
the realities of dying and death. Although Many people openly discussed how despite a really tough topic people went
people mean well, these actions are they felt when a loved one died, and away feeling energised and excited
misguided – everyone has the right to feel, shared very personal experiences they about the work that can now be done
grieve, talk about and remember their had not spoken about before. with self-advocates, providers, families,
loved ones, as well as time to recover. Once given the forum and the opportunity supporters and other professionals to
to discuss these personal issues in a safe really improve people’s quality of life in
Taboo environment, people had the confidence relation to this topic.”
Loss and bereavement are often a taboo to open up about thoughts and feelings
subjects in English culture, but the REACT they had kept quiet about. There were a spiritual close and the next steps
team, a group of self-advocates in discussions about how “bottling up” feelings In a surprising and unplanned close to the
Lancashire, along with volunteers from can affect mental health in a negative way. conference, a local minister arrived, and
other learning disability organisations, the whole group joined together to close
held a conference recently to address this Practicalities around death with a prayer. Fittingly, this ended the day
very subject. A specialist will writer from a local firm of on a spiritual tone.
Around 70 people attended, the majority solicitors encouraged people to think So, what is the next move for the self-
of them with learning disabilities. about what they wanted to happen to advocates? They intend to develop an action
Workshops and discussion groups allowed their possessions and who they wanted to plan to take to the Lancashire Learning
people to explore thoughts and feelings in have them after they died. Disability Partnership Board. The topic will
a variety of areas around death and dying. Funerals were discussed, including who be on the agenda at the self-advocates’
The opening speaker, a self-advocate would be asked to arrange one, whether conference in Blackpool, and providers are
from Blackpool, shared her very moving people would prefer a religious ceremony, being encouraged to sign up to discuss
story about her partner’s death and how if they wanted a burial or cremation, and death and dying, and what people want to
she had been unable to spend time with whether to have flowers and singing. happen to them at the end of their lives.
him as his last few days approached, as he A session with a funeral director, who What can be quite a sombre subject has
shared a home with other people with was called away to deal with a brought about changes in the way people
learning disabilities and it was thought to bereavement and was replaced by his think about dying, and many self-
be inappropriate that she stayed there. wife, discussed what happens at a funeral, advocates have since shared the fact that
She told this story so others would not be and issues to think about. There was also it has prompted them to make a will.
prevented from having loving relationships the opportunity to hear from Cruse Fewer have organised a funeral plan, but
with people, particularly during the most Bereavement Care. awareness has been raised. n
difficult times like the end of life. ● For more information about ReACT
There were workshops on a welcome discussion www.caritascare.org.uk/for-people-with-
“Bereavement circles” (friends and family People appreciated the opportunity to disabilities/research-in-action-react/
who come together to support the person discuss this subject. When people die, those
through a period of loss), “Dealing with left behind need time and space to Sue Pemberton is chief executive of
loss and talking about it” and “How to process things, to think, to get help, to Integrate Preston
plan a funeral”. talk and to feel supported, comforted and www.integratepreston.org.uk

28 Vol 31 No 3 | Spring 2018 community Living www.cl-initiatives.co.uk