Commentary On When My Dad Died: A Relative's Perspective
Commentary on Richard West's article, "When My Dad Died: A Relative's Perspective"
Sheila Hollins (UK)
Richard's experience was one that is still, alas, shared by many. It should never be allowed to happen. When he told me about what had happened, I gave him a copy of the Books Beyond Words title, When Somebody Dies. He wished someone had given it to him at the time of his father's death. People with intellectual disabilities have a right to participate fully in the grief and mourning process. Bereavement support and counselling should be made available routinely and not just when a maladaptive reaction has been recognized as grief. Both individual and group work with bereaved individuals may be helpful, particular if nonverbal approaches, such as the use of counselling picture books, are available. Richard would have liked to belong to a group where death and dying could be safely discussed with trusted peers. Beyond Words encourages the creation of book clubs where regular members discuss a range of subjects prompted and supported by the wide range of titles in its series of wordless picture stories.
Hospital staff often don't know about easier-to-understand sources of information. It may be down to family members and direct support staff to be better informed and able to advocate for the person so that their emotional and information needs are understood and met. Good tools to use directly with people with intellectual disabilities are three picture books published in Books Beyond Words: When Somebody Dies (2014, 2nd edition), When Dad Died and When Mum Died (both available in a 4th edition, 2014, that includes new text and guidelines). See https://booksbeyondwords.co.uk/bookshop?category=Grief
For background information, see
Blackman, Noelle (2003) Loss and Learning Disabilities. London: Worth Publishing.
Hollins S, Egerton J, Carpenter B (2016) Book clubs for people with intellectual disabilities: the evidence and impact on wellbeing and community participation of reading wordless books. Advances in MHID 10: 275-283.
Hollins S, Carpenter B, Bradley E, Egerton J (2017) Using wordless books to support clinical consultations, The Journal of Mental Health Training, Education and Practice, Vol. 12 Issue: 4. Emerald. DOI: http://dx.doi.org/10.1108/jmhtep-03-2017-0022
Commentary was originally published on the website in 2003. Reviewed in 2019, content continues to be relevant. The references were updated in 2019.