Two months ago the press down here got hold of a story that had a lot of resonance in the US – that of the so called “Ashley Experiment”. It is a story that has been rattling around in my head ever since, the more so for the negative responses to what has been done to Ashley. It is a story of parents of a daughter (Ashley) who is severely handicapped but is clearly part of the their loving family. In order to guarantee a quality of life they thought ideal for Ashley her parents have had a number of medical procedures undertaken on their child, the one gaining most attention being the hormone treatment which will keep their daughter small and lightweight for the rest of her life. She has also had a hysterectomy and her breast buds removed, in order to deter potential sexual harassment. Her story can be found at http://ashleytreatment.spaces.live.com/blog/
Critics of the process and the parent’s decision have focused, in part, on the rights of the child (she cannot talk and could not be involved in the decision making process) and the ethics of the decision. Indeed typical commentary was distracted by the so called ethics, or lack thereof, of the “experiment”. But the irony of this scenario is that if you argue in defence of these kids on the basis of ethics, or “doing the right thing”, they end up with no rights such as you and I enjoy. Our own daughter cannot speak. Or make any decision about her lifestyle. If our social security people had any say she would have no rights since we are not supposed to make decisions on her behalf – she is after all an adult. It gets to a ridiculous point where to even get her pension we have to take her into the social security office to “parade’ her – necessary to convince the retarded staff behind the counter that she can’t sign her own documentation. Left to her own devices she has no rights. It is only that someone speaks up for her that she has any rights, and quality of life, at all.
A touchy point with young handicapped women who live in a group home, as our daughter Jocelyn does, is their contraceptive regime. On the one hand we are accused of interfering in her life by putting her on the pill. That assumes she has the ability to make choice about who she might have sex with. (She does not, a separate issue altogether.) Most often with these dear people their rights only come about if we interfere and facilitate those rights. Of course that is when, as with the parents of Ashley, you are accused of being self serving and not looking after the interests of the child. It is a battle you never win.
For the record I applaud what Ashley’s parents have done. If you want to be provoked have a look at their site. And be encouraged by the notion that sometimes the rights of these people come about when people “interfere” on their behalf. Left to their own devices these children would have no rights at all.
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