Advancing advocacy for disability inclusion

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What’s in a name

The year 1959 was a pivotal year in our hospital’s history – this was the year that our name, in response to public pressure, officially changed from “The Home for Incurable Children” to “Bloorview Hospital, Home and School” and then to “Bloorview Childrens Hospital” in 1964. These name changes represented the hope for a wider social transformation and advocacy against disability stigma.

Bloorview Childrens Hospital, 1960-1969.

Through the decades, we’ve hit some inspiring milestones in our advocacy work to advance disability inclusion, including our groundbreaking, award-winning, ‘Dear Everybody’ anti-stigma campaign, as well as our leadership role in the 2023 historic $330 million funding proposal, ‘Make Kids Count,’ to right-size children’s health care in Ontario.

Advocacy has long been embedded within our hospital. We are committed to amplifying the experiences of our community and demanding better. We listen to the needs of the children, youth and families we serve and advocate for environmental, policy and system change. By doing so, we foster a culture of inclusion and empowerment, better equipping them with the tools and resources they need to build resilience and advocate for themselves.

Poster from our ‘Dear Everybody’ campaign, 2017.

June’s story: learning together how to speak up

“It’s not whining — it’s speaking up clearly and learning to do that systematically. […] Let’s learn together how to speak up. My role was to listen to families, support them, help direct them, help them speak up.”

– June Chiu, family/community liaison and family support specialist, 1993-2015

Family advocacy resource team, 1993, from left to right: Audrey King, Janice Greenberg, June Chiu.

Holland Bloorview has long been a leader in the realm of family-centered advocacy. Over 30 years ago, at what was then The Hugh MacMillan Rehabilitation Centre, we launched the Family Advocacy Resource Service (1993) – the precursor to our Family Resource Centre. One individual fundamental to both the creation of this service and the evolution of family leadership is June Chiu, who advanced this work for 22 years. June and her entire team provided families with education, mentorship and the skills needed to become strong self-advocates.

June reflects: “We were helping families to understand that they can speak up. By doing this, they were also role modeling this for their children.”

June’s dedication was informed by her lived experience with her own daughter Nadine, who accessed many of our services. Throughout the years, June has witnessed significant growth in the way communities, service agencies and families collaborate, though she acknowledges there is room for improvement. As June says:

“Individuals and families started to actively work with their communities and service agencies to shape programs that better meet their needs, to help achieve their goals of inclusion, opportunities for participation and having a valued role in the community. Some experienced some success in achieving these goals, yet, for many people today, the challenge continues.”

Desiree’s story: the art of advocacy

Sometimes when you see a gap, you need to fill it yourself. Desiree Da Costa, current client service facilitator at Holland Bloorview, former client and author, did just that. During the recent COVID-19 pandemic, Desiree was thinking about the lack of information available about cerebral palsy and books about people with disabilities as a whole. This inspired her, in 2022, to write ‘All About Me and Cerebral Palsy’: a children’s book about a second grader starting at a new school who explains cerebral palsy to her fellow classmates. The book is modeled on one she wrote at age six to introduce herself to her new classmates after she left the Bloorview School Authority. As Desiree puts it:

“Everybody was nice and welcoming, but it was challenging for me to go from an environment where all your classmates have disabilities to a larger class where you’re the only one with a disability.”

Desiree is still on a mission to use her book to advocate for disability justice in Ontario schools. In April 2024, she presented her book to Stephen Lecce, former minister of education, and Michael Parsa, minister of children, community and social services. She is championing its inclusion in school libraries across the province. Way to go, Desiree!

Left: Desiree at four years old, 1998. Right: Desiree with her book ‘All About Me and Cerebral Palsy,’ 2024.

Ivona’s story: historic funding for pediatric care

Ivona Novak has been a family leader at Holland Bloorview for six years, lending her voice as a parent to son, Noah, a client at Holland Bloorview. During the pandemic, she contributed to the advocacy work of the Children’s Health Coalition, of which Holland Bloorview is one of its founding members. She shared her son’s experience and spoke at the ‘Kids in Crisis Town Hall’ (2020), attended by Christine Elliott, former minister of health. In 2023, Ivona saw the realization of the coalition’s efforts when the pediatric sector received a historic $330 million in funding from the Ontario government. Ivona reflects on the ‘Make Kids Count’ investment:

“Being a part of the advocacy journey […] has been incredibly fulfilling for me. Looking ahead, my hopes for the impact of this funding on clients and families are high – I anticipate improved outcomes and experiences for those receiving care at Holland Bloorview.”

Ivona and Noah, 2024.

Live with us for a day poster, 1981.

Advancing disability inclusion: did you know...

The United Nations proclaimed 1981 the International Year of Disabled Persons (IYDP). To commemorate, Holland Bloorview hosted a ‘Live with us for a day” event for the community.

Our work is not done

While there is plenty to be proud of, the work towards building a more inclusive future for all continues. Together with children, youth and families we remain determined to continue to effect meaningful change inside and outside our walls to ensure that they live meaningful and healthy futures. We will continue to challenge ableism, demand better care and services for children and youth and advocate for an inclusive world for all.