A Profile in Peer Advocacy

The Eleanor J. Riese Story

Eleanor Riese was a human rights pioneer. She fought for a patient’s right to know and be heard about forcible medical treatment with powerful psychiatric drugs.

Born and raised in San Francisco, Eleanor graduated from George Washington High School in 1960. She suffered from meningitis as a child and, during her early adult years, was diagnosed with schizophrenia.

In June 1985, Eleanor was admitted to the hospital as a voluntary mental health patient. There she began a persistent, legally significant fight for the basic right of informed consent and the right of competent adults, absent an emergency, to refuse psychiatric medication during short-term civil commitment. When Eleanor tried to exercise her right of informed consent and avoid adverse effects, she was forcibly injected and placed on a 14-day LPS (Lanterman-Petris-Short Act) hold.

Hospital staff attributed her dry mouth — so severe that she had difficulty speaking, dizziness, swollen feet, shaking, memory loss and increased seizures — to her psychiatric diagnosis and delusions, but Eleanor knew it was the drugs. She called the local patients’ rights office seeking legal representation. Jean Matulis, forensic appellate lawyer and former patients’ rights advocate, referred her to attorney and former MHCRA Program Director Colette Hughes, who then represented and advised Eleanor.

During this same hospitalization, Eleanor advocated to get others released from seclusion and restraint — a practice she abhorred — referring to the seclusion room as the “torture chamber.”

Throughout the years, Eleanor sponsored small gatherings of peers at her apartment to break bread, share their problems and seek solutions.
Because of her efforts, a Riese Hearing is now required to augment this protected right for all persons civilly detained on a short-term basis in California.

We owe Eleanor Riese great thanks, reverence and respect. She pushed against the system and insisted that her experiences, and the injustices she suffered, be made public and undeniable, essential elements in the ongoing struggle for bodily autonomy and control of our own lives.

More about the Riese Case

NEWS
NY Times Article  US Court Rules Mental Patients May Reject Forced Drugging

MORE INFORMATION  Disability Rights California

FILM “55 Steps,” a 2017 film starring Helena Bonham Carter as Eleanor Riese, Hilary Swank as attorney Colette Hughes, and Jeffrey Tambor as Professor Mort Cohen, details Eleanor’s courageous battle to confirm the basic patient right of informed consent to psychiatric drugs during short-term civil commitment, and Miss Riese’s experiences fighting to make lasting changes in California’s mental health law in the name of patients’ rights.

This independent feature film, directed by Billie August, was pre-released with standing ovations at the 2017 Toronto Film Festival, and released in the United States in 2018. It can be streamed for viewing on a number of platforms, is for sale and rental via DVD and is available at your local public library. The film is in more than 20 languages and has been shown in human rights venues internationally, including the Office of Civil Freedoms in Tajikistan.