Decreasing levels of fail

“When they approached the gynaecologist for a hysterectomy, Erica’s parents asked if they had to apply for a court order, but were told they didn’t need one.
“Nobody questioned it,” said EM. “The gynaecologist said: ‘I’ll do it. When do you want to do it?’ We were surprised it went as smoothly as it did. We thought the insurance company would call but they didn’t. My son asked whether we needed a court order. She said ‘Oh, of course not, you want what’s best for your daughter’.”

Nobody questioned a child having a hysterectomy. The parental request went smoothly. Insurance covered it without balking. This reinforces what I have been hearing for the last few years from physicians, ethicists, lawyers and disability rights activists: the so called Ashley Treatment is quietly being done. No ethics review. No legal review. No follow up research. No long range studies. Nothing. This scares me to death. How can this happen? To me the answer is simple as it is dangerous. Children with profound cognitive and physical disabilities are not fully human. They do not share same rights as children that can think and move within a broad spectrum we deem normal. These children have no bodily integrity—their bodies can be changed at the whim of parents and physicians. These children do not warrant legal protection.

Five years ago a controversial procedure was carried out on a 9 year old American girl with severe cerebral palsy known as Ashley X. Her growth was permanently retarded, surgery performed to remove her breast buds and give her a hyserectomy keeping her in a lifelong ‘Peter Pan’ situation.

The Guardian has discovered that at least 12 other families are now undergoing such treatment to permanently infantalise their children. These are families who are undoubtedly doing what they perceive as being in the best interests of their children, but is that really the case? And more importantly the question we should all be asking is why families are pushed into the position that they even need to consider such radical options to prepare for the continuing care of their adult children?