A first-of-its-kind report is casting a harsh light on what’s believed to be a growing practice of parents utilizing controversial medical treatments to physically alter people with disabilities.
The report released Tuesday examines cases where parents have used procedures to prevent puberty or make other significant changes to their children with disabilities. The study also looked at instances where life-saving medical treatment has been withheld from those with disabilities.
“The thought of doctors and guardians, together, deciding to remove the body parts and stunt the growth of a child based on assumptions about their awareness and quality of life is shocking and disgusting,” said Curt Decker, executive director of the National Disability Rights Network, an umbrella group for the protection and advocacy organizations in each state which produced the report.
Decker’s group documented cases where basics like food and water were denied to those with disabilities who had minor illnesses. In one instance, the report found that a 13-year-old boy with a developmental disability was denied antibiotics to treat pneumonia and ultimately died.
Officials at the the National Disability Rights Network say their concern was prompted by the so-called “Ashley treatment.” The approach includes hormone therapy and surgery to keep children physically small and prevent sexual maturity. It is named for a Seattle-area girl with severe disabilities who was the first-known person to undergo the procedure.
There has been significant debate about the ethics of the treatment since Ashley’s case was made public in 2006. The girl’s parents argued that because of her mental and physical deficits their daughter would be most comfortable and less vulnerable if she remained the size of a child.
Many disability advocacy groups have criticized the approach, however, as violating Ashley’s rights.
Nonetheless, use of the treatment is believed to be on the rise and the current report includes the stories of two others who have undergone the “Ashley treatment” in recent years.
The National Disability Rights Network is encouraging greater oversight of procedures like the “Ashley treatment” and the withholding of medical care for people with disabilities.
“Every person is born with civil and human rights and an inherent dignity,” said Decker who is behind the report. “The reality that this is happening in the United States is anathema to the core values that we as Americans say we hold. That it is happening to those unable to use their own voice is even worse.”