My IQ score does not mean I do not understand loss

Discourse about protecting the vulnerable is salient when one cares for, lives with, or supports/educates people with disabilities. Such a discourse is understandable when environments and/or situations can be harmful to the person, but what about circumstances that are painful rather than dangerous? What is the risk when we do not allow a human being to learn about loss, mourn and grieve, and express their loss and move forward with it?

‘Disenfranchised grief’ is the technical word for when someone feels he/she cannot openly talk about their grief, publicly mourn their loss or ask for social support (Doka, 2002). This risk is not limited to disability but can equally take place with the non-disabled child, adolescent, or adult, when we do not stop and think about how one can be impacted by the loss of someone or something. Instead, our priority is to ‘protect’ our loved one from harm or from something we believe they won’t understand.

Illness and death of a caregiver or significant person is a very traumatic event and, many times, carer’s, possibly out of their own inability to handle and cope with their own grief, end up excluding their disabled dependent throughout the process of the illness, resulting in missing out on the benefits of anticipatory grief (feelings of grief that start before the actual death occurs) and also rituals related to death, such as the funeral service.

Research linking the field of disability to bereavement is on the increase. Nonetheless, emphasis has been on observing behaviour changes. Only more recent studies speak about the need to “give voice” to disabled people, Corby et al (2015) and Gilrane-McGarry & Taggart (2007). “Hearing their views is essential rather than depending on the views of others such as staff or therapists” (Corby et al., 2015). The study conducted, extracted 4 specific themes:

1. “Needing to know: Being included” – Amongst others, this theme highlighted the need to spend time with the person before they passed away; the shock they felt when the person died; the need to explain the details of the passing and the struggle, as they only knew vague details about their death; the pride in attending the funeral, or not wanting to go, to avoid the crying.
2. “Struggling to say: The emotional experience” – The evident combination of the painful emotional experience and the difficulty to find language to express it. Minimising one’s emotions, dismissing them, and frustration, all salient features within this theme.
3. “Love after death: A continuing relationship” – This theme pictured the need to maintain a relationship with the deceased, which gave the disabled person strength and helped build their resilience; beliefs in afterlife as a coping strategy; longing for more time with the individual who passed; and how the bond with the deceased helped to accept death.
4. “Missing their presence: the wider impact of death” – Bereavement goes far and beyond the loss of the deceased. Death leads to several personal losses, such as loss of support, or the loss of someone who is comforting, or funny. The change in familiar routines or moving out of one’s home. The loss of the relationship with the person, not to mention the witnessing of the pain of loved ones who are still alive.

Reading through bereavement research and reflecting on my experience of grief further strengthened my belief that, as humans, we all process loss differently. This is because we are different, we lived different life experiences, met different people and we were cared for differently, and not merely because we have a disability or not. When we love someone, we want to protect them from pain and harm, but while all pain is difficult, not all pain is harmful. There are aspects of pain we need to live through so we can learn more about ourselves, so we can grow and become strong and resilient in a way that does not harm us, harm others and/or the relationships that tie us together. If we want to protect our loved ones, let’s do so by equipping them with tools that help them handle grief and be of support to others through their grief. Let’s learn how to have a relationship with pain since only this way we can start to understand what we are dealing with.