RxISK is also running a Freeing Teresa post today..

Samizdat is co-publishing Freeing Teresa with Franke and Bill James. It’s a true story about Franke’s battle to protect her younger sister, Teresa, who has Down syndrome. Ten years ago, based on incorrect health information, Teresa lost her right to decide where to live. Then, she was put involuntarily into long-term care. This was a terrible mistake. The book tells the story of how it happened and how the two sisters stood together against their family, the medical system, and even the police to defend Teresa’s right to be free.

Franke’s sister, Teresa, was born with Down Syndrome, the seventh of seven children. At the time, in the early 1960s, the conventional medical advice was Teresa should be institutionalized. But her parents decided to keep Teresa at home and raise her with the rest of the family, just as they were doing with their other children. Teresa had a good life, living at home, going to school, and growing up in the community.

Forty-nine years later, a crisis arose. Teresa’s mother had died, but Teresa was still living happily with her father. His long-term plan for Teresa was that she would move in with her brother, who had promised to take her. But that brother was having second thoughts, so some of the other sisters came up with an alternate plan. They decided that Teresa should be put into a nursing home—government-funded long-term care.

Franke immediately objected, saying that Teresa was young and healthy. (The picture below is 10 years later).  She had no need for this type of medical treatment.

However, today, it is commonly accepted in the medical community that people with Down syndrome are prone to early-onset Alzheimer’s Disease. Knowing this, some other siblings started worrying and talking about Teresa’s “strange behaviour.” Then, they had Teresa assessed by a care agency social worker. After meeting Teresa and listening to the stories of her siblings, he concluded Teresa was suffering from rapid cognitive decline. This was not an accurate assessment at all because it was based on false information, and it has been proven wrong by the fact that Teresa has lived for ten years in the community since then. But it had a devastating effect on Teresa’s life. He determined that Teresa was “not capable.” Teresa lost her right to decide where she lived.

Franke did not know about the assessment, but she did not believe the strange stories about Teresa, and she continued to object. The others just dismissed her, assuming Franke was too busy with her career as an environmental activist to do anything about it. But as things continued to escalate, Franke offered to take Teresa into her home in an effort to stop the plan. But the siblings, who said they had all decision-making power and were acting as Teresa’s legal “guardians,” rejected Franke’s offer. A few days later, they secretly took Teresa and had her put into a nursing home.

Franke was in shock. And so was Teresa. The siblings did not tell her what they were doing until it was actually happening. But four days later, Franke and she secured Teresa’s discharge from Long-term care and brought her back home. That’s when the siblings called the police, and things got worse – picture of Bill answering the doorbell to the police below. Fortunately, Franke and Teresa were able to stand together, and they have stayed together, living in the community for ten years.

Franke, Teresa and Bill have a lot of support in the disability community, but we want to share this story with a wider setting. The facts of the story will resonate with people dealing with mental illness, dementia, and elder care.

In 2019, Teresa won a Human Rights Award – she has her own site here Teresa Heartchild. with its message Human Rights Should not be Disabled.

The post Freeing Teresa: Human Rights Should not be Disabled first appeared on Dr. David Healy.