Freeing Teresa

A True Story about My Sister and Me — by Franke James

franke-james

“It’s My Decision”

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Teresa Heartchild at age 13 in a still from the documentary Exploding the Myth aired in 1979 shows Teresa writing in her notebook. She is white and has long brown hair and glasses. She has Down syndrome. Images and text used with permission from Community Living Ontario
Teresa Heartchild in the TV documentary, Exploding the Myth in 1979

Webinar: Protecting the Rights of People with Intellectual Disabilities

The story behind Teresa’s and my involvement in Community Living Ontario’s webinar goes back forty-five years to 1979 when the documentary Exploding the Myth aired across Canada—with Teresa in it. The film was produced by Community Living Ontario, which is hosting this webinar now!

TV listing ad for “Exploding the Myth” features thirteen-year-old Teresa wearing glasses and holding an exercise ball in her arms. Teresa looks at the camera with an expression of curiosity and wonder. Her lips are parted as though she’s about to speak. The ad text said, “Exploding the Myth. Thirteen-year-old Teresa [redacted surname] plays an important role in Exploding the Myth, a documentary special which explores the attitudes of a significant portion of the general public toward those who are mentally handicapped. Images and text used with permission from Community Living Ontario.

Exploding the Myth’s goal was to debunk false myths and expose pervasive negative social attitudes that limited the inclusion of people with intellectual disabilities. Teresa starred in the documentary to show how inclusion worked.

Teresa proved that the myths were false

“Myth: The intellectually disabled should be segregated in institutions. It’s best for them.” (Teresa lived at home.)
“Myth: Children with intellectual disabilities should not mix with normal children.” (Teresa went to the same girls’ school I went to.)
“Myth: People with intellectual disabilities are strictly limited in what they can do.” (Teresa was breaking barriers and starring as a role model for social inclusion.)

Teresa Heartchild at 13, doing her Swedish Ball routine in the documentary Exploding the Myth. She is wearing a white sweater and black pants. Images and text used with permission from Community Living Ontario
Exploding the Myth: Teresa, at 13, performs a Swedish ball gym routine.

Teresa’s happy lifestyle flew in the face of all the myths. She was living a normal life for a girl her age—which was a revolutionary act for people with intellectual disabilities. However, the myths still lingered and caused harm. There were 4,000 names on the waiting list in Ontario!

My parents were part of the deinstitutionalization wave in the 1960s

My parents were interviewed about their decision to raise Teresa at home. As Teresa bounced the exercise ball on camera, we hear my father’s voice—a time capsule from the past: “When Teresa was born, we had quite a number of questions . . . And we didn’t like the answers.” They said they would give her all the love and opportunities that their other six kids (including me) enjoyed.

Why our May 23, 2024 webinar is essential now!

Today, Teresa shows the importance of inclusion, but with a scary twist. In 2013, after living in the community for 49 years, Teresa was put into a nursing home against her will. Teresa didn’t want to live there and had to fight for her right to live in the community—a civil right that most people take for granted. (My memoir, Freeing Teresa: A True Story about My Sister and Me, goes into detail.) We’ll be explaining how we helped Teresa get out of forced care and regain her decision-making rights.

Stephanie Dickson, from PooranLaw, will talk about protecting the rights of people with intellectual disabilities—and how to increase their sense of control over their own lives. She will explain the drawbacks of guardianship and alternatives to it. The panel will discuss the dangers of capacity assessments and a person’s right to say, “No, thank you.” We’ll discuss these big questions: Why is “Nothing about us without us” critically important? How can we best support people during life transitions? How can we encourage people with intellectual disabilities to express their own choices? What do they want in their life?

How to protect rights and increase control for people with intellectual disabilities: a webinar by Community Living Ontario.

Join us and Community Living Ontario. Register for the Zoom webinar here: https://bit.ly/ProtectingRightsandIncreasingContro

Community Living Ontario Event poster for webinar: Protecting Rights and Increasing Control. Featured are the three webinar speakers: Stephanie Dickson, Partner, PooranLaw, Franke James and Teresa Heartchild, Authors of Freeing Teresa: A True Story about My Sister and Me. Descriptions: Stephanie Dickson is a white woman with long, blonde hair. She is wearing a black blazer. Teresa Heartchild is a white woman with Down syndrome, pink glasses and brown hair. She is wearing a blue cap on backwards. Franke James is a white woman with mid-length blonde hair. She is wearing a black hat and black blazer.

Date & Time: May 23, 2024, 09:00 AM  Pacific Time, 12 noon Eastern

Speakers:

My sister was sent to a nursing home against her will

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Teresa Heartchild at the 2020 Inclusion BC retreat for people with developmental disabilities and their families to learn about rights. Teresa is smiling at the camera and holding her badge up. She is a white woman with Down syndrome wearing round wire glasses, a grey down vest, a tie-dye sweatshirt, and a backwards ball cap. Photo by Franke James
Vancouver artist and self-advocate Teresa Heartchild at Inclusion BC’s planning retreat at Loon Lake, B.C. in February 2020.

We fought and won, but thousands of others aren’t so lucky

By Franke James

My sister’s life was written off ten years ago with the stroke of a pen—just like thousands of others with developmental disabilities.

Teresa has Down syndrome, and she was 49 when the capacity assessment took place in Ontario.

I saw her as happy, healthy and active, enjoying living nearby with my 91-year-old father, who often said, “We’re a team. We help each other.”

But that’s not how the social worker saw her.  

Teresa did not say, “No”

Teresa didn’t understand what the assessment was for, and according to the records, she did not agree to be tested. But, she did not say, “No.” So the social worker asked her about her “activities of daily living.” When Teresa said that she could shower and dress herself, he concluded that her claims of independence were evidence of her “cognitive deterioration.” Others had told him she couldn’t do these things. Then, he ticked the “not capable” box on his form.

Teresa immediately lost her right to decide where she lived.

When I first heard this, I was shocked. What about her human rights? Wasn’t her right to live in the community protected by the Charter or the UN? Article 19 of the UN Committee on the Rights of Persons with Disabilities states that persons with disabilities have the right to live in the community, have the right to choose where they reside, and should not be isolated or segregated. And yet, these declarations didn’t protect Teresa.

Human rights violation on a massive global scale

Three years after Teresa’s assessment, a news exposé revealed that 2,900 young people with developmental disabilities were in nursing homes in Ontario.

Across the border, Disability Rights New Jersey reported in 2023 that more than 2,000 young people with developmental disabilities were in the state’s long-term care “contrary to their wishes … because the state does not properly evaluate their needs.” Just like Teresa.

Last year, the Premier of Nova Scotia apologized to citizens with disabilities for the “historic, systemic discrimination” which denied them the right to decide where they lived. The UN’s Special Rapporteur, Catalina Devandas-Aguilar, wrote, “the deprivation of liberty on the basis of disability is a human rights violation on a massive global scale.” This injustice is widespread but few people know about it.

Nursing homes have quietly become dumping grounds for people with developmental disabilities.

Teresa’s plight is just like thousands of others

Imagine how it is for thousands like Teresa. Since she had lost her right to decide where she lived, Ontario’s care agencies and two of our siblings decided for her. Teresa was admitted as a “crisis placement” to a nursing home—despite my offers to have her live with me. She was shocked. I was horrified. And our father, her primary caregiver, was heartbroken. Teresa was trapped, unable to get out without external help.

I heard many excuses: There aren’t enough group homes! Teresa’s been on the waitlist for five years! A bed in a nursing home is not great, but it’s not terrible. The government will pay for everything! Paired with the unspoken assumption, What kind of future will she have anyway?

Four days after Teresa was put in, I went to the nursing home with my father, who signed her discharge, and Teresa was released “against medical advice.” Teresa moved in with me the next day.

Ontario’s system failed Teresa

I was appalled that the system had failed Teresa. I wanted Ontario politicians to hear her story and make sure it didn’t happen to anyone else. Two months later, Teresa and I appeared before Ontario’s Select Committee on Developmental Services. They were conducting hearings around the province. We told Teresa’s story by weaving her pictures and health records together. I said, “Teresa is an active, strong-willed and able-bodied adult. Teresa should never have been admitted to a nursing home.” 

At the end of our testimony, the vice-chair and then-MPP Christine Elliott said to me, “I think I can speak for all of us on the committee when I say that this is a truly shocking story that you have told us today.”

“Long-term care homes are pressured…”

The committee’s final report, published July 22, 2014, said: “Long-term care homes are pressured to accommodate young and middle-aged people with developmental disabilities without any medical need for this type of care or any training to support this group of clients.”

It has been 10 years since Teresa was discharged, and she is thriving. Her artwork is now on a T-shirt celebrating World Down Syndrome Day 2024.

The system bungled Teresa’s assessment

The system bungled Teresa’s assessment, and she narrowly escaped. But Teresa fought back and got her rights restored. In 2014, on World Down Syndrome Day, Teresa said, “It’s my human right to decide where I live.” She asked the government to “say sorry.” Two years later, Ontario’s Minister of Health publicly apologized to Teresa.

Despite sounding the alarm 10 years ago, thousands of young people with developmental disabilities are in nursing homes today, and more are being funneled in. That’s not fair. Nursing homes aren’t intended for people who have decades of life left.

Most vulnerable people, including those with developmental disabilities, can’t fight back against a system of forced care. Existing laws are not preventing this tragedy. We need education about ableism to change social attitudes and be genuinely inclusive.

Franke James is an award-winning activist, artist, and the author of ‘Freeing Teresa: A True Story about My Sister and Me.’ She lives in Vancouver, B.C., with her husband and her sister, Teresa.

Tickets to Freedom

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A True Story of Empowerment

The compelling saga of siblings in conflict over one sister’s disability and the right thing to do

Freeing Teresa: A True Story about My Sister and Me
“The result is more than a memoir: it’s a testimony to how ‘tickets to freedom’ are gained through fighting and love, displaying how Teresa’s own wishes and interests add fuel to the fire of empowerment on many different levels.”
D. DONOVAN, Sr. Reviewer, Midwest Book Review

Midwest Book Review (excerpt):

Franke and Teresa found themselves virtually alone. Standing against forces of medical, legal, and psychological systems bent on declaring Teresa incompetent and institutionalizing her for life. 

Surprisingly, Franke’s work as an environmental activist and the lessons she learned from that job translated nicely to her efforts on her sister’s behalf. They provided a foundation of methodology, approach, ideology, and confrontation that served her well in her latest battle.

From decision-making empowerment and voting rights to navigating possibilities for Teresa, Franke’s interactions with her father and siblings provides a powerful set of discourses that examine ideals, realities, and the mix of special interests and perceptions that can create a perfect storm in a family. 

Of particular interest are the points of contention that clearly outline different possibilities in acting and reacting to family members: 

“Weren’t Deirdre and Conrad still in charge? Probably, I said. But the alternative was seeking guardianship through the court system, and that could take six months or more. If we went down to Aiker Place with Dad, he could ask to see the paperwork, and maybe there would be another way. We both believed that Dad would have the moral authority as Teresa’s father and her primary caregiver. Maybe that would be enough.”

From issues of control to others about empowerment and battles… Franke lays out a candid, clear course of struggle. This will engage a wide range of readers, from those coming from legal circles to families facing their own internal and external truths.”

Read the full review
Buy the book at Amazon