It started with the question: “Where will Teresa live?”
We couldn’t agree on what was best for our disabled sister if she could no longer live in the family apartment in Toronto, Ontario, with our father.
In 2013, an Ontario government social worker declared Teresa “not capable” during a care assessment, and my sister lost her right to decide where she would live.
Wrong home
Teresa was put into a nursing home by two of her older siblings, acting as her guardians (apart from Teresa, none of my siblings support the telling of this story).
However, Teresa did not have any medical need to be in long-term care.
Within days, our father, my husband Bill and I helped her get discharged back into Dad’s apartment.
Teresa had a new capacity test done that determined she could decide where she lived and who would take care of her.
She moved in with us in December 2013. We relocated to Vancouver, British Columbia, in March 2014.
Bill and I helped Teresa to ask the care authorities for an apology for wrongful institution-alisation. Teresa said it had been wrong to put her in a nursing home.
On behalf of Teresa, the BC Civil Liberties Association wrote to the Ontario minister of health, saying: “We are gravely concerned that the government, through its actions, appears to condone the forced placement and mistreatment of developmentally disabled adults.”
After further publicity and campaigning, the health minister publicly apologised to Teresa in July 2016.
This story isn’t just about our family. It is about the difficulties that most people with disabilities face in exercising one of their most basic human rights: to choose where to live.
Freeing Teresa: a True Story About Fighting Ableism has taken 10 years to write.
What I didn’t know at the start was that Teresa’s experience was not unique – it’s happening around the world. I hope that by talking about it, change will happen.
And the tenth anniversary of freeing Teresa from the nursing home is a joyful and important reason to tell this story.
Freeing Teresa by Franke James with Teresa Heartchild and Billiam James is published by The James Gang
Franke James is an activist, author and artist
An extract from Freeing Teresa
When Teresa was born with Down syndrome in 1964, the doctors told my parents she was “severely handicapped” and would need lifelong care. They advised my parents to put her into an institution to get the care she needed.
Many parents would have taken the doctors’ word as gospel but they were already raising six kids. They ignored the experts and brought their baby home.
Teresa was one of the lucky ones. In 1960, four years before her birth, news stories revealing the awful truth about institutional life were beginning to leak out.
My mother and father were part of the wave of parent activists who rejected institutionalisation. No doubt they felt the sting of social disapproval, but they had an unshakeable commitment to fairness, an abundance of love and wills of steel.
In the 1970s, group homes were seen as a good solution. But, by the time Teresa was in her 20s, the idea had been shelved. Many people started to think that group homes were just mini-institutions and that it was healthier for people to stay with their families.
But what happens to people with disabilities as their caregiver parents age or die is a dilemma. Do they want to live with other family members? Can they live on their own with support? Will they move into a group home where they may lose their independence? Or will they have to move into a nursing home, usually for end-of-life care?
My siblings had the solution: put Teresa into a nursing home. Once she was in the system, she was there for good, because they couldn’t evict her from a nursing home.
This was shocking. Teresa was healthy and active. She was 49, not 79. She loved living in a comfortable apartment with my dad in the neighbourhood where we all grew up. Why should she give that up – and her freedom?
When my older sister told me I had no power over the decision to put Teresa in a nursing home, that’s when I knew we needed to do something to stop them. That night we offered, in writing, to have Teresa move into our home.
But my siblings refused to consider our offer. Then they blocked me from speaking with the care agency. Just a few days later, they put Teresa into the nursing home without telling me or Dad. Teresa was shocked and didn’t understand what was happening.
Wrong and right places
The entrance to Aiker Place (not its real name) was like a motel carport, a low-ceilinged drive-through where families could conveniently stop to unload ageing relatives, wheelchairs and other baggage.
Here, Teresa was surrounded by people who were decades older than her, had serious medical problems and were near the end of their lives.
I spoke with the chief executive who, after pressing, agreed Teresa did not belong there. She was the only person there who was aged under 50 and had Down syndrome.
The day after we had rescued Teresa, I sent my siblings a letter offering peace. We explained – again – why having Teresa live with us would be ideal for so many reasons.
We have an extra bedroom, I wrote. We work at home and our schedules are flexible. She will be close to family members, and she will be in the area she grew up in.
We feel we can help Teresa grow and develop to her full potential and have helped her with her abilities; she has done an 8km fundraising walk for cancer research.
The ultimate goal would be for Teresa to live in a group home if that is what she wants and is in her best interests. But we are in no rush. We were – and still are – honoured to have Teresa live with us.
Back in a family home
It was the first of December 2013, a chilly night. Teresa and I stood in the doorway, watching as Bill helped Dad get in the cab.
As it pulled away from the curb, Dad lowered the window and waved goodbye. Teresa and I waved back as the car drove away and disappeared into the darkness.
We stepped back into the warmth of the house. “Let’s go upstairs,” I said, “and we’ll make sure you have everything you need.”
My son Trevor’s old room would suit Teresa beautifully. The fluffy white duvet on her bed looked cosy and inviting.
“I want to stay here with you, Franke.”
“Oh, that’s so nice.” And I gave her a hug.
She looked at me and said: “You’re my sister.”
“That’s right. We’re sisters.”
“And we’re together.”
