a wooden boardwalk goes straight through a marsh. Overgrown tall grass and reeds grow slightly over the sides of the boardwalk as it disappears into the forest.

Grief and Disability: Carrie’s Story

By Carrie Batt, Grief Educator

My son says I am a mover and a shaker. He tells his friends that because of my extensive travels abroad and my volunteering. When his friends ask: “Why did she do that?” he always tells them “Because my mom believes that ‘anything is possible’.” As I look back on my journey, I know where I picked up this motto. When my baby brother was born, the doctors told my parents: “he will not walk, talk, nor know who you are”. From that day on my parents embodied that motto ‘anything is possible’ and in the end my brother does far more than walk and talk. This circumstance introduced me to the disability community knowing that people with disabilities deserve and can do more. Interestingly, I have had the privilege of working within the developmental sector in a variety of positions for more than thirty years.

In 2018, I added to my parents’ motto ‘anything is possible’ and included ‘everyone is worth it’. I added those words to the motto right after I had attended a kintsugi workshop offered by Rami Shami, a prominent member within the deathcare community. As soon as I realized that Rami had spent the last 30 years caring for the dying. I inquired about his experience in death, dying and disability. Rami unfortunately, had no experience in supporting people with a disability who were dying. Upon learning about the sheer lack of support and expertise on this topic, I proceeded to complete the end-of-life training with Beyond Yonder Community Deathcare program. Soon after, SEOL Care was created, which offers a disability-sensitive approach to death, dying, and disability.

It has become clear to me over time that we have much work to do to ensure the delivery of disability-sensitive grief literacy and grief support. In March of 2022 my proposal for four 1-hour sessions was approved, we provided the program for 20 participants. My heart was full in each session.

My heart remains full of hope that conversations, education, and expertise about disability sensitive end of life care and grief support will gain momentum as more and more people join in on this vital conversation.

Currently, there are several rays of hope that suggest grief education and support can and will be offered in a more inclusive way. As a certified grief educator, I now offer online disability-sensitive grief support services for individuals and groups. My employer is offering disability-sensitive grief literacy sessions. The Bereavement Ontario Network has shared information through their newsletter and in a network webinar, where the gentleman I support and I were the guest speakers. Bereaved Families of Ontario have been receiving multiple requests to provide grief resources for the neurodivergent community. Additionally, Bereaved Families of Ontario are seeking out speakers with lived experience related to grief and under-represented communities for their grief literacy series. I remain grateful knowing that these are hopeful times, and these examples are a positive step in the right direction.

a bridge in the fog

Disenfranchised Grief – When It Feels Like Your Grief Doesn’t Matter

Post by Maureen Pollard, MSW, RSW

Disenfranchised Grief – When It Feels Like Your Grief Doesn’t Matter

Grief that is acknowledged, validated and supported is grief that has access to pathways for healing. There are some losses that don’t receive this attention and respect. Disenfranchised grief is the name for what we experience when a loss is not acknowledged in our community.

Disenfranchised grief occurs with any loss that remains unspoken and is not validated. Some of these types of losses include pregnancy loss, LGBTQ2S+ partnership losses, suicide, overdose death, the loss of a co-worker, neighbour or pet. These losses tend to be considered less valid and less important than losses in some of our primary and close relationships. There is often no acknowledgement and little support for people who experience disenfranchised loss.
This grief is just as real and powerful as grief that is accepted by society. You’ll feel powerful, unpredictable emotions, you’ll find yourself shifting through the experience of grief as you adapt to this loss, just as you would with any validated loss. The primary difference is in the sense of isolation you’ll feel, and the minimizing indifference or disbelief so many people in your circles will express if you talk about your grief.

How to Take Care of Yourself

Validate yourself. Your loss is real, it is important and you can trust your experience of grief. You don’t need someone else’s permission to grieve.

Seek the support of others who validate your grief. There may be a peer support group, or a professional who is informed and experienced in the area of your loss who can share information and insights about your grief based on others who have walked this path before you.

Create ritual and ceremony to honour your grief. There may be an activity that is meaningful to you and helps you feel you are acknowledging the importance of this loss. Light a candle. Make art. Engage in an act of kindness in memory of your loved one.

Share your story and offer validation to others. If and when you feel strong enough to bring your grief to the world in a way that may help others who experience this type of loss after you, you can offer the wisdom gained from your own pain to guide others to the knowledge that their grief is real, and worthy of attention and support, too. Although it is not necessary, helping others can help you further your own healing, too.