The Kansas City Star (Sunday)

BOOK REVIEW Memoir recounts sister’s rescue mission, ongoing fight for disability justice

- BY MEGAN BEAUREGARD Booktrib.com

Should everyone have the right to choose where they live? The answer seems obvious – of course, choosing where you live is a basic human right.

But for Teresa Heartchild, an artist, self-advocate and author who has Down syndrome, everything changed when that right was taken away from her. Teresa’s older sister, Franke James, gives a true account of the arduous path that led to Teresa’s wrongful institutio­nalization and eventual rescue in her memoir, “Freeing Teresa.”

The memoir opens on the night of Nov. 30, 2013, with cops knocking at the door. Franke, her husband Bill, and her father had just freed Teresa from the nursing home she was forced into. From that tense beginning scene, we jump backward in time to get glimpses of the events leading up to that pivotal day.

Across compilatio­ns of “extensive digital records: emails, photograph­s, videos, audio recordings, police records, health records, court records including sworn affidavits and my journals,” readers are introduced to a cast of people – Teresa’s siblings, father, and the key players in her life. But in all images, Teresa and Franke’s siblings are blurred out, a deliberate approach to reflect their absence in Franke’s life, and their role in Teresa’s. Franke is the only sibling who supports the telling of “Freeing Teresa.”

With an aging father and a sister with Down syndrome, this group of siblings naturally worries about ensuring their relatives are taken care of. Still, nobody is willing to step forward and do the caretaking, for fear it will interrupt the flow of their lives. Casual discussion­s turn to planned meetings to determine the future of Teresa and their father’s care, without either’s knowledge or consent.

“Freeing Teresa” depicts complex dynamics between family members and harsh ableism directed toward Teresa – but it also celebrates growth, change and humanity. Though this is a portrait of

Teresa’s life, her autonomy, intelligen­ce and endless capabiliti­es, it also shows the transforma­tion Franke embarks on over the course of her own life.

Upon seeing “Rare,” a play starring several actors with Down syndrome, Franke’s eyes are opened to the endless opportunit­ies that are available to Teresa. “It was part revelation, part reminder,” says Franke. “People with Down syndrome are just like any of us.” It will be a long and difficult road to give Teresa a life where she is free to reap all the benefits of a flourishin­g and self-determined life.

Franke, a career artist and activist herself, interspers­es the story with details of how she was blackliste­d for her climate change art by the Canadian government. It was this conflict that built the foundation­s of her activism – something that ultimately prepares her for the battle she fights with and for Teresa. Armed with informatio­n about Teresa’s rights, Canadian law, and a determinat­ion to record everything, Franke is prepared to do whatever she can to ensure the best possible life for Teresa, no matter what it takes.

“Freeing Teresa” is dedicated to “those who are different” and is a refreshing reminder that people who are different deserve the same dignity and respect as any of us. Franke’s constant persistenc­e that Teresa is so much more capable than anyone expects, and her determinat­ion to fight for her sister is inspiring. In 2023, Teresa celebrated the 10-year anniversar­y of her rescue.

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