Exploring loss for people with intellectual disabilities

The Mary Stevens Hospice was recently contacted by a community group for people with intellectual disabilities and autism, to help them create a space for people to explore feelings and emotions in relation to loss and grief.

Twelve out of their fifteen members had experienced the recent death of someone important to them, leading staff to seek support for so they could have the opportunity to speak about their personal grief in a relaxed and safe environment. Staff also voiced concern over previous situations where they felt they were not enabling people to express feelings and emotions around loss and grief, fearful of upsetting other group members.

After discussions we invited Art Psychotherapist Dr Jed Jerwood to join us and facilitate a practical art-based workshop, so that if individuals wanted to share their feelings they could, with staff being supported to facilitate these conversations.

At the workshop long tables were covered with paper for people to sketch, write and express how they feel when they are happy, sad, surprised, scared, or excited. The narrative turned to the themes of loss and grief, and the group shared their personal experiences and how these made them feel.  One person said: “When nan died it made me very sad. I still get upset and miss my nan. My best times were going to the Albion with her and my brother. I miss nan when we go to the Albion now but if I say that I upset my brother and my dad and mum.”

Another drew circles around the neck of a cut-out figure. When asked the significance of the circles she explained “‘that’s how my throat feels when I’m sad, and the circles in my tummy are the bubbles I feel when I’m nervous.”

Attendees had variable understanding and capabilities of living with grief. For some it was confusing and highlighted the importance of using the correct language when speaking about death and dying. Rather than euphemisms or abstract terms, for people with an intellectual disability language needs to be clear and concise.  

One person said: “When mum died the vicar told me that inside everyone's heart is a locked room and my mum is in that room in my heart, safe. But she can’t be locked in my heart, can she? And how did she fit in there?” 

Others had been encouraged to stay strong and had struggled to contain their feelings for fear of upsetting others: “Dad died last year, I have to look after mum now that there isn't anyone else to be a helper. People say it’s my job and I have to be strong for mum. I'm her carer and I look after everyone.” 

Some people cried and others laughed while sharing with peers amusing stories about their loved ones, but everyone respected one another’s personal thoughts and views. The empathy and mutual respect that comes when people share stories was evident throughout the workshop.

Towards the end, people were encouraged to reflect upon the day. They chose to pin up their cut-out figures holding hands, to express their friendship and support for each other alongside pictures and messages on postcards.  

Following the art workshop the group invited The Mary Stevens Hospice to return and facilitate a session making spiritual bead jewellery.  The beads can represent memorable points in life, building a symbolic timeline of events, or they can be used to represent a person, with different beads signifying memories, favourite things, holidays, and so forth.

One person chose to make a bracelet to give to his father on what would have been her parents’ golden wedding anniversary. She added each bead with care and thought as to what it represented, and one family carer said:  “she was really proud of what she had done and explained it all to me and why she used the colours she did. Very impressed.”   

Throughout both workshops several themes emerged. These were:

• People wanted to talk; it was a relief to recognise loss and speak about people important to them.
• They were worried about family members coping with grief.
• They explored practical ideas to commemorate anniversaries and significant events – “the need to do.” 
• The group wanted to help and continue supporting one another.
• There is a lack of bereavement support groups to meet the needs of people with intellectual disabilities. 
• Group art workshops help people express and share

We plan to return for further workshops, with the next visit supporting people to create memory books.