Opinion: The moment I was no longer invisible

Siblings of people with disabilities play a critical role in the lifelong well-being of their brothers and sisters, but it is a role that is overlooked and undervalued. GETTY

The Canadian Caregiving Summit 2023 brought sibling carers out of the shadows, creating space for our stories, showcasing our contributions to caregiving and inviting our input into a National Caregiving Strategy.

When my mother died almost 10 years ago, I became the primary caregiver for my brother, a person with Down syndrome. At that time, I felt totally alone and alienated in my new role. The experience of being a sibling caregiver didn’t seem to register with anyone, there was no one to talk to or help me understand what to do. I felt that my new role as sibling caregiver and all it entailed, was totally invisible to those around me. From this experience came the emergence of Siblings Canada , now an initiative of the Canadian Centre for Caregiving Excellence.

I have since learned that I am definitely not alone. There are, in fact, thousands of us across the country, quietly managing difficult issues on behalf of our brothers and sisters such as suitable housing, poverty, mental health, and service advocacy. We are doing this work in isolation, unsupported and without adequate information.

Sibling carers are undervalued by policymakers

Over the last four decades, this number has grown, and continues to grow, thanks to medical and social advancements that have given people with disabilities a longer life expectancy than ever before. Although siblings of people with disabilities play a critical role in the lifelong well-being of their brothers and sisters with disabilities, our role is overlooked and undervalued not only by parents, but also service-providing organizations, and policymakers.
Our perspective as sibling carers is critical to the disability and caregiving conversation. We grew up in the same generation as our brothers and sisters and experienced life from a similar perspective. While our parents may have focused on the day-to-day aspects of care, we spent time playing, talking (and maybe even fighting) with our siblings. Growing up together we may have encouraged and cheered on our siblings with disabilities to pursue things that our parents may not have wanted or liked. We pried open the doors that were often slammed shut for our siblings with disabilities: at home, at school and in our communities. We bring the perspectives of possibility, inclusion and lifelong connection.

From Nov. 6 to 8, the Canadian Caregiving Summit , hosted by the Canadian Centre for Caregiving Excellence, brought together lived experience experts, leaders, policymakers, and researchers across the age, disability, and illness communities to work together to build the foundation of a national caregiving strategy.

This event was remarkable for many reasons, including bringing sibling carers out of the shadows, creating space for our stories, showcasing our contributions to caregiving and inviting our input into this important national strategy.

Siblings Canada , founded by myself (Helen Ries) and Becky Rossi to connect peers who care for a sibling with a disability, had two tables in the middle of the conference room to encourage siblings of people with disabilities to connect with each other. While there was a group of us already connected and very excited to meet in person — many for the first time — what was most remarkable were the number of conference attendees who were not only realizing that there was a community to which they belonged, but who were also connecting with a part of their identity that they may have not known was so appreciated.

“Attending the summit felt so empowering to be seen and heard by people in the room,” says Terrence Ho, a sibling and a Summit attendee. “Knowing that my lived experience as a sibling is similar to other carers and that there are so many other siblings doing things with and for their siblings makes me feel less alone. And to know that we are creating ways to help other siblings is reassuring.”
For the many others I had the chance to connect with, it felt like suddenly siblings were no longer being overlooked, and our lived experience was valued remarkably in this space. We were no longer invisible, and we finally had a seat at the decision-making table.
“It was such a surreal experience being recognized and even honoured for being a sibling,” says Zoe Kariunas, also a sibling and a Summit attendee. “I think often there is a perception of choice when the sector, policymakers or even parents consider how siblings are involved in care, but the stories we heard from other siblings showed that even though there is love, there is also very few other options than for siblings to get involved in the care. Choice isn’t usually something many siblings have and we need a seat at the decision-making table at all levels.”

I am so grateful to the Canadian Centre for Caregiving Excellence for bringing sibling caregivers out of the shadows. We are here, we are doing some heavy lifting and what we have to say matters to the lifelong well-being of our brothers and sisters with disabilities.

Originally published in Healthing. View the original article here.