The families of severely disabled children are the ones who have to live with their unbearable situation, says frank furedi |
|
What kind of arrogance drives people to condemn the parents of a nine-year-old American girl for choosing a difficult medical procedure that will keep her small for the rest of her life?
Severely disabled, Ashley X has a mental age of a three-month-old. She cannot talk, sit or stand up. She is fed by a tube and spends her life lying where her parents place her.
Two years ago her parents, in consultation with doctors, decided on a radical treatment - involving hysterectomy - to prevent her physical growth. They believed a smaller Ashley would be easier to care for, and the procedure would improve her quality of life.
This week the parents gave a public account of their action, posting a series of photos of Ashley along with a statement explaining their decision. |
| |
|
 |
 |
 |
| The response to Ashley’s parents’ decision has been hostile and insensitive |
|
|
Sometimes parents have to make painful and difficult decisions about what's best for their child. But they are rarely trusted by outsiders to do the right thing.
The response to Ashley's parents' decision has been hostile and insensitive. The parents have been denounced for perpetrating an outrage for their personal convenience. Disability advocacy groups claim to be horrified by what they label as 'eugenics'.
The real outrage raised by Ashley's experience is the response to it. It appears that everyone feels entitled to butt in and lecture others about what's in the best interest of the child. Advocacy groups are so obsessed by their political agenda that they perceive every choice made by a parent as a precedent with ominous implications for their crusade.
Of course the critics can walk away from all this, whereas the parents have to live with their decision for the rest of their lives. Which is why they, along with their doctors, are best placed to make the right decision. 
FIRST POSTED JANUARY 4, 2007
|
