Freedom Friday: A history lesson on the persecution of people with disabilities – current laws
December 6th, 2013
Sometimes in order to heal, we need to bear witness to where we were. To develop an appreciation and gratitude for the progress that has been made and the progress that still needs to be accomplished. But that can only occur if we know where we’ve been, were we are now, and the work that we need to do together to recognize and celebrate the diversity of each individual.
The last two week’s Freedom Friday introduced the persecution of people with disabilities between 1907 and 1939 in Germany and the United States. (Between 1907 and 1939, more than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill.) Today we are looking at our current sterilization laws,
The U.S. Supreme Court upheld forced sterilization in 1927, a decision that still stands today. Justice Oliver Wendell Holmes wrote in the majority decision, “It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…. Three generations of imbeciles are enough.”
In 1994, a survey of 88 parents found that 75 (85%) were willing to consider sterilization for their developmentally disabled children; 8 (10%) requested it.12 Parents cited fear about the efficacy of other methods and about pregnancy, particularly from sexual abuse. Few thought their children could want or care for a child. Perhaps most instructive, 85 (97%) said they would want medical staff to help them make the decision but not to decide for them.
In a recent report released by the National Council on Disabilities, under the subheading, “Parenting with a Disability Today: The Eugenics Movement’s Backdoor?”, a particularly disturbing case is recounted where the Massachusetts Department of Mental Health in 2011 sought a court order to force a pregnant woman with a psychiatric disability to undergo an abortion and subsequent sterilization against her will.
Even today, 22 years after the passage of the Americans with Disabilities Act, several states still have some form of involuntary sterilization law on their books.
The power of the eugenics ideology persists. Women with disabilities still contend with coercive tactics designed to encourage sterilization or abortion because they are not deemed fit for motherhood. Equally alarming, a growing trend is emerging toward sterilizing people with intellectual or psychiatric disabilities.
The North Carolina legislature recently budgeted $10 million to compensate living victims — likely fewer than 200 — who were sterilized under 20th Century eugenic laws. Each person will probably receive approximately $50,000, and that state’s legislative measure will be remembered as a historic first in America. But unless other states act quickly, history will also recall that thirty-one other states had sterilization statutes, and future generations will be astounded that most of them have neither voiced a word of regret nor voted a dollar for victim compensation.
Approximately 33 other states had involuntary sterilizations laws during the same period as North Carolina’s laws. Beginning in 2002, seven states officially apologized to victims of state involuntary sterilization laws. These states are: Virginia, Oregon, Washington, South Carolina, California, Indiana, and Georgia.
Now, involuntary sterilization is recognized as a human rights violation. Most states that have considered the question have concluded that sterilization of an incompetent person requires court oversight and an individualized best-interest inquiry in order to protect the person’s fundamental right to reproductive freedom. California leads the way, with some of the most developed laws in the nation protecting mentally disabled people’s reproductive rights.
Freedom Friday, December 13, 2013 will address the current view of disabilities.
United States Holocaust Memorial Museum (http://www.ushmm.org/information/exhibitions/online-features/special-focus/nazi-persecution-of-the-disabled)
University of Vermont. Presentation on “eugenic sterilizations” in comparative perspective at the 20012 Social Science History Association. (http://www.uvm.edu/~lkaelber/eugenics/)
National Council on Disabilities.
J Reprod Med 1994;39: 701-706. http://www.ncd.gov/publications/2012/Sep272012/
What’s Wrong Wednesday: Baby denied heart transplant
December 4th, 2013
(CNN) – The mood in the room was somber as five doctors, a nurse, and a social worker pulled their chairs around the table and turned to address Autumn Chenkus and Charlie Higgs.
The couple’s 5-month-old son, Maverick, was down the hallway fighting for his life, and the doctors explained there was nothing they could do to help him.
“Take your baby home and love him for the time he has left,” Chenkus and Higgs say the doctors told them.
They asked how long their son had left to live. About six months, they remember the doctors telling them.
Maverick was born with a severe heart defect, and even after two surgeries was in heart failure. Doctors had discussed a heart transplant with Maverick’s parents, but at the meeting they said he didn’t qualify for a new heart because he had a rare genetic defect that put him at a high risk for tumors and infections. A heart transplant would be too risky, they explained.
As Chenkus did her research on Maverick’s genetic condition, she couldn’t believe her eyes. Not one of the studies she read mentioned anything about an increased risk for tumors or infections. She e-mailed one study’s author, and he confirmed she was right.
But it didn’t matter. The doctors still refused to give Maverick a new heart.
“The real reason the hospital is refusing to list our son or consider him for a transplant is the hospital’s perception that Maverick will be mentally and/or physically delayed. It is clear that the hospitals (sic) decision to deny Maverick a transplant is based on nothing more than this illegal discrimination,” Maverick’s father concluded.
To read the whole story, the CNN link is http://www.cnn.com/2013/11/30/health/disabled-transplants/index.html.