Institutionalizing people with disabilities hasn't stopped — it just has a different name

They may be deemed our most vulnerable, but those with disabilities are often treated as the least valuable members of society, says advocate

They may be deemed our most vulnerable, but those with disabilities are often treated as the least valuable

Two former residents, Harold Dougall and Cindy Scott, at the Huronia Regional Centre, Oct. 2, 2021. (Peter Bregg CM - White Pine Pict)

In the 1950s, the Cohen family was torn apart. Doctors diagnosed the Cohens' two little boys, Alfie and Louis, with intellectual disabilities, but there was no help at home. Instead, they told the family the children would be better off in Orillia, Ont., in a provincial institution for people with intellectual disabilities (later known as the Huronia Regional Centre) and to forget them. Their brothers and sisters didn't know what happened: how the boys lived, suffered and died or where Louis was buried. 

In 2013, after the Ontario government reached a settlement in a class-action lawsuit initiated by survivors of Huronia, the surviving Cohen siblings started searching for information about Alfie and Louis, a story told in the documentary Unloved: Huronia's Forgotten Children

Premier Kathleen Wynne apologized for harm done to the boys and generations of others at provincial-run institutions such as Huronia. "Their humanity was undermined. They were separated from their families and robbed of their potential, their comfort, their safety and their dignity," she said. "We will protect the memory of all those who have suffered, help to tell their stories and ensure that the lessons of this time are not lost."

'They murdered him': Filmmaker's half-brother was among those sent to Huronia, an institution for children with intellectual disabilities

2 years ago
Duration 2:55
Documents reveal the horrific conditions that children with intellectual disabilities had to endure at Huronia, including serious illnesses that Louie, the filmmaker's step-brother contracted while there, which led to his death only 18 months after his arrival.

However, that promise was not kept. People with intellectual disabilities remain vulnerable to abuse and abandonment despite the community programs brought in to replace institutional care.

The tragic history of care for people with intellectual disabilities

Institutions like Huronia first opened roughly 150 years ago to provide specialized care for people with intellectual disabilities, many of whom until that point had been abandoned in hostels and hospitals and improperly confined in jails. But behind those walls, residents were often abused and neglected. And the public knew about Huronia's poor living conditions as early as 1960, when journalist and historian Pierre Berton warned about the "horrors" that can arise when people are out of sight and out of mind, as they were in Orillia. 

Likewise, in a 1971 report to the province's health minister, lawyer Walter Williston documented extensive failure of care: overcrowding, unsafe conditions, understaffing and underfunding and recommended phasing out these large institutions. That didn't happen in Ontario until 2009.

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And the provincial ombudsman's 2016 report Nowhere to Turn found continued gaps in the supports and services for people with developmental disabilities, who were promised more independent lives, leaving them vulnerable to abuse and abandonment and inappropriately placed in hospitals and long-term care homes or even jailed — institutionalization in a different form.

Throughout the COVID-19 pandemic, people with intellectual and developmental disabilities were more than twice as likely to die after getting COVID. They may be deemed our most vulnerable, but they've been treated as our least valuable, denied support in their homes and communities, isolated and neglected in institutions. People with disabilities, both congregated and segregated, lack choice, respect and relationships. Failing to learn from our mistakes, we've continued to repeat them.

In fact, people with intellectual disabilities are at risk from before birth to death. Inadequate education and support means expectant parents must grapple with uncertain futures after receiving an atypical prenatal test. In Canada, we've made it easier for adults with disabilities to get medical assistance to die, while they struggle to get the accommodations they need to live. And pressure is mounting to allow assisted dying to people with dementia even though they cannot give consent, because people too often see intellectual disability as a fate worse than death. 

These concerns coalesce around an urgent question: do we segregate people because we're afraid of disability? Or are we afraid of disability because we segregate people? People with intellectual disabilities will not be included in the wider community unless they are accepted for their unique personalities and contributions — not as someone's job, but as family, fellow citizens and friends. Both attitudes and policies must change.

Solutions start by expanding inclusive education and direct funding

To improve opportunities for children with disabilities, we must set the highest possible goals for academics and life skills, supporting them in regular classrooms, allowing them to participate in their neighbourhood schools just like everyone else. Decades of research have shown how this works. Children of all abilities who attend school together will learn to live together as adults, better and more mutually supportive than their parents and teachers could have imagined. 

Providing adequate government funding directly to people with disabilities is also key. They can choose and hire the people who will assist them in their own homes and communities, creatively and flexibly and supported by family and friends. When people become employers, they gain respect and power and are able to direct their own lives and participate in and contribute to society. And direct funding may be more cost-effective too.  

Unloved is a call for change

Tragically, Alfie and Louis Cohen could not tell us about Huronia's unsanitary and unsafe conditions. However, others who survived that institution have been valued consultants, generously sharing their memories and wisdom so this story could be told. Those who know the obstacles best challenge us and show us how to remove them.

After all these years, the Cohen family can honour Alfie and Louis. The film made in the boys' memory calls us to compensate for the love they were denied.

Let's welcome and adore all babies and assist families with child care. Let's all advocate for inclusive education and direct funding. No one wants to live and die in an institution. Let's come closer — person to person, family to family, in stronger communities that remove barriers and express love through action. A diverse and accessible world is better for all of us. 

Marilyn Dolmage MSW is a disability rights advocate and was a litigation guardian in the class-action lawsuit concerning Huronia Regional Centre, where her brother, Robert, died. She promotes effective, inclusive education and personalized funding. Inspired by the short but meaningful life of her son, Matthew, she works alongside people with disabilities and their families to end segregation and create new support relationships. Dolmage is currently writing a book of essays and poetry. 

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