By Carrie Batt, Grief Educator

Grief literacy has become a popular topic, yet it is a topic that is untapped within the disability community, specifically within the developmental sector. The sector supports and empowers people with a developmental disability and consists of families, their loved ones and service providers.

Within the sector there are very few conversations, education, or shared expertise about grief, loss, and disability. The pandemic brought to light the sheer lack of education and support that exists about grief, loss, and disability. My way of dealing with such a realization was to try to make a small change, which began by forwarding a proposal to my employer, requesting that we offer grief literacy sessions. The proposal was accepted, and we successfully offered four 1-hour grief literacy sessions, which reached a total of 20 participants. What we learned in offering these sessions was the value of learning new language to help in expressing and describing their grief experiences as, often, people with a developmental disability have grief stories that so often are unacknowledged and go unnoticed. Their grief histories are often extensive, and very painful. The painful history of the grief experienced amongst people with a developmental disability that begins with the atrocities of the institutions, the Huronia Regional Centre, The Ontario Hospital School, and The Orillia Asylum. The magnitude of such grief and loss has only recently been made public.

There is such an enormous amount of grief and the loss that until recently was unnoticed. Such unacknowledged grief within the developmental sector is far more common than ever imagined, especially when we include that of our direct support workers. Currently their grief is unheard of. Consider for a moment, supporting someone for ten years in their home, and when the supported person dies, cleaning out their room to prepare it for the next person to move in, and doing so without any recognition of your personal grief. Such scenarios play out daily within our developmental sector and just being expected to carry on with the work is the norm.

With that said, the reality remains that the developmental services sector can only benefit from receiving support and guidance from the bereavement support services sector. Such a partnership would help to bridge the gaps and begin dedicating resources towards, training education, and understanding about grief, loss and disability.