Remembrance with learning disabled people

On 9th November 2021, Remembering Together Programme Manager Kim Simpson attended an online event by PCPLD (Palliative Care for People with Learning Disabilities) exploring how to include learning disabled people in Remembrance. The event was recommended by Charlie McMillan, director of Scottish Commission for people with Learning Disabilities, and member of the Remembering Together Advisory Group. Kim shares her experience and learning below.

Image credits: PCPLD Network

The PCPLD Network believes that learning disabled people should be valued in life, as well as be supported with excellent end of life care. The session I attended in November explored the idea of remembrance with learning disabled people. This related both to remembrance by learning disabled people of those they have lost, and also the need to involve learning disabled people in planning how they themselves would like to be remembered.

I was struck by a few things at this event. There was a warmth, honesty and, most importantly, a directness in the way that death, bereavement and remembrance were discussed so there was no room for confusion or lack of understanding by those affected. I noticed that the session referred to ‘people who have died’ rather than using terms like ‘loss’ or ‘bereavement’ and this was very reassuring as it was clear what we were speaking about at all times.

Along with Irene Tuffrey-Wijne of L’Arche London, Richard Keagan-Bull was one of the chairs of the event. Richard is a learning disabled leader who brings lived experience of support for learning disabled people to his role as trustee for Walsingham Support. This was a key point; when connecting with learning disabled people, or those working with learning disabled people, it is crucial to involve people with lived experience.

The session covered dealing with and recognising complex emotions, such as both gratitude and sadness being felt at the same time. They shared approaches that people have used to include learning disabled people in remembrance, such as memorial gatherings online, sharing objects and images, telling stories, playing music. We also heard from The Lantern Community on some of the work they had done with poetry, co-creating poems with people that had lost a friend or member of their community, as well as working with people to write poems about how they themselves wanted people to remember them. This was extremely powerful and moving.

They also discussed the importance of preparing spaces for remembrance, making sure that the room itself feels like somewhere that remembering can happen and making sure that it is clear that the space is being used for something different than what it usually would be used for, which made me reflect on how space might be used in Remembering Together projects.

Using different approaches and co-creating meant that people who don’t use words could be part of remembrance and this felt like an important point. The experience of Covid is so unique and so raw for so many, that they may not be able to express it in words, whether they have learning disability or not.

While this event talked specifically about including learning disabled people in remembrance, I felt that there was so much that was relevant to all kinds of people who want to remember. My main take-aways from this generous and kind sharing event were:

• People need space to be upset together

• People often want their grief and loss to be heard

• Sometimes words are not enough, or they must be found with others

• For some people who live in residential care (whether older, care-experienced young people, learning disabled or experiencing some other kind of illness or impairment) losing someone within their community can be like losing a member of their family

• Death touches everyone, including the people that care for those around the person who has died

• Co-creating in remembrance can be a powerful tool for reflection and healing

Finally, attending this session reminded me that while Remembering Together will be a space to reflect on all kinds of experience of Covid, it is important not to forget the people that have died in this time, whether because of or simply during Covid, and those who have lost someone. We can learn so much from the approaches that people take in different corners of our communities. Thanks to the PCPLD network for sharing theirs.

Watch the video of the session below.

Remembrance: Including people with learning disabilities in remembering those who have died

About this event

Being remembered in death is important. It confirms the value the person had in life, and it can help the people left behind in their grieving process. However, people with learning disabilities have often been excluded from the rituals or mourning, or indeed from being remembered.

In this webinar, we will look at different ways in which people with learning disabilities can be including in remembering people who have died, and the benefits this brings. Speakers include people with learning disabilities, carers and professionals. They will share insights, experiences and practical tips. The webinar is useful for anyone involved in the lives of people with learning disabilities, but will also inspire anyone else with an interest in the human condition.