A controversial surgery, used to reduce voice volume, has sparked a debate among disability rights activists and medical bioethicists.
Kade Hanegraaf is a 14-year-old with autism. Until 2011, he would often scream at a volume of more than 90 decibels, which is louder than a lawn mower, more than 1,000 times a day.
That year, at his parents’ request, a University of Wisconsin surgeon performed a surgery that spread the cartilage in Hanegraaf’s vocal chords, reducing his volume.
Hanegraaf’s parents said the surgery has both improved his social life and made their lives easier.
“It was absolutely horrific. We couldn’t go anywhere,” said his mother, Vicki Hanegraaf, in a statement released by the hospital, according to the Associated Press.
Though the surgery was featured in a journal article in March 2013, the surgery did not gain attention until the Wisconsin State-Journal ran an article on Hanegraaf on Sept. 26.
The Autistic Self Advocacy Network, however, called the surgery “profoundly unethical,” arguing that it was done for parents’ benefit, as opposed to the child’s. Additionally, it worried that by decreasing Hanegraaf’s volume, it would reduce his ability to communicate in potentially harmful situations.
“Autistic people and others with communication related disabilities often use what’s termed as ‘problem behavior’ as a way of communicating distress, anger, fear, anxiety or other important emotions that may not be easily communicated for someone without standard speech,” Ari Ne’Eman of the Autistic Self Advocacy Network told Salon. “To violate a person’s bodily autonomy and damage their ability to communicate to serve the convenience of the caregiver is nothing short of horrific.”
“We view this as similar to the Ashley X case or the long history of involuntary sterilization, teeth removal and other inappropriate and unethical medical procedures conducted against people with developmental disabilities.”
Contrarily, Arthur Caplan of New York University’s Langone Medical Center told Salon that the surgery was “ethically defensible.”
“The core reason is it’s reversible and could benefit the boy by helping him interact with others,” Caplan said. “This is freeing a young person with a terrible, dysfunctional inability to stop screaming.”