The controversial and colorful advocate for the disabled, Harriet McBryde Johnson, died earlier this week at her Charleston home. Johnson first came to national prominence when she publicly challenged Princeton’s Peter Singer on the ethics of euthanizing profoundly disabled infants, and dedicated her life to improving the quality of life for those in institutions she called the “gulag”:

Harriet McBryde Johnson, a feisty champion of the rights of the disabled who came to prominence after she challenged a Princeton professor’s contention that severely disabled newborns could ethically be euthanized, died on Wednesday at her home in Charleston, S.C. She was 50. …

Using a battery-powered wheelchair in which she loved to “zoom around” the streets of Charleston, Ms. Johnson playfully referred to herself as “a bedpan crip” and “a jumble of bones in a floppy bag of skin.”

Rolling into an auditorium at the College of Charleston on April 22, 2001, Ms. Johnson went to the microphone during a question-and-answer session to confront Peter Singer, a philosopher from Princeton, who was giving a lecture titled “Rethinking Life and Death.” ….

An e-mail exchange followed that encounter in Charleston, leading to an invitation to debate Professor Singer at Princeton on March 25, 2002. Their two encounters were the subject of the 8,000-word Times article, which brought Ms. Johnson considerable attention in the disability rights movement and from the general public.

She also drew “considerable attention” when she argued for Congressional intervention in the Terri Schiavo case.   In fact, she gave one of the most dispassionate and logical arguments to stop the efforts by the court to remove Schiavo’s feeding tube, certainly less emotional than many on that side of the debate.  Re-reading it now will recall all of the drama and anger of those days, but Johnson’s example should have served to instruct how the rest of the debate should have been conducted.

Lest anyone think that Johnson was a doctrinaire conservative, one should read the Times’ well-written obituary.  She argued for public financing for home care for the profoundly disabled, calling the nursing-home system a “gulag”.   In 2003, she railed against care facilities where the disabled got parked in front of blaring televisions and ignored by the staff.  “I sometimes dare to dream that the gulag will be gone in a generation or two,” Johnson once wrote.

Johnson always recognized the power of the individual and the spark of the divine in human life.  She never stopped advocating for equality and dignity for those with disabilities of any kind and especially those with severe handicaps.  Johnson maintained a sense of humor and self-deprecating wit that allowed people to see her as the complete person she was.  Harriet McBryde Johnson will be sorely missed in the years to come.

Fausta has more.