Charlie Gard case provides debate

In a summer of acrimony, the story of Charlie Gard captured headlines as the world waited for doctors and courts to decide whether the son of Chris Gard and Connie Yates of the United Kingdom would receive experimental treatment which would have at best only give him five painful years of life.

Charlie was born with mitochondrial DNA depletion syndrome, a rare genetic defect which has left him paralyzed, unable to cry or breathe on his own. Doctors at Great Ormond Street concluded further delay would cause the boy needless suffering and want to let Charlie die. The parents took the case to several courts and lost every time.

The elder Gard and Yates wanted to take Charlie to the U.S. to see Dr. Michio Hirano, who has developed a way to treat but not cure Charlie’s syndrome. The treatment is only 10 percent effective. Knowing this, the parents were still willing to try it annd privately raised $1 million to pay for the trip and therapy, but Great Ormond refused and the court backed it up.

Hirano instead flew to London and examined Charlie and determined he could not help the infant. The elder Gard and Yates accepted his opinion and ended the legal struggle. Now is the time to let father and mother prepare for the death of their baby.

But more cases akin to Charlie’s will arise. Children with severe, painful conditions will be born and two views of the meaning and value of disability will battle.

The first is the medical perspective. Doctors — fewer here than in other countries — see a disability as a problem to solve, as a psychologist told me. This view, he said, fails to see that a person with a disability as having anything to contribute to the community. In past decades, doctors urged parents of children with special needs to institutionalize them.

My left foot is malformed. A surgeon operated on it when I was 9, but what he did changed nothing. He then told my parents to put me in an institution and take a vacation, which made me emphathetic to Charlie’s parents.

The second view is the social one. It says the disabled have gifts and society is richer when they can share them.

Helen Keller lost both sight and hearing as a baby. Her parents could not reach her until a tutor taught her to communicate in a unique way. She became known worldwide.

But for every Keller, there are countless children born with disabilities whose greatest life accomplishment will be to tie their shoes or control their body’s functions.

Then there are cases like mine, children who can learn, can work be it as a janitor or lawyer, but need varying forms of support all their lives.

Who decides the value of a disabled infant and on what basis? Charlie Gard raised those questions. They’re worth debating.

This story was originally published July 26, 2017 at 5:00 AM with the headline "Charlie Gard case provides debate."