After I posted last night, Wizard and I went to bed, deeply upset. Over night, you all left comments and links to the Ashley site. Thank you. At first, I couldn't read the page all the way through. I kept being distracted by my counter arguments to the points made. I kept being nauseated by the difference between intentions and outcomes of actions. Some things stand out.
- Ashley has become the "ideal" medically shaped disabled body: she is now built for her carers and her environment. Our society will progress only when it accepts variation and adapts to it. A disability studies understanding of the interactions between body and culture is necessary here.
Ashley will not get to exist in her natural body. Instead of looking at the societal and physical institutions that might make life for Ashley difficult and changing them -- instead of going all out for disabled human rights -- Ashley's parents pruned her so that she could exist in society's walls with as little physical discomfort they thought humanely possible. Ohhh. How wrong. Change the world not the person!
- Human beings come in different configurations, physically, spiritually, intellectually, and relationally. We are what we are. The greater the diversity, the more rich we are as a species.
- To "excise" Ashley's "buds," because, well, she won't be breast-feeding and has no use for them and because they might get big -- soooo excessively big that they are uncomfortable; yes, it is possible, but not at this stage, known for certain -- is to deny her the pleasure in her body.
Sexual pleasure is natural. Kids don't have and don't need the full intellectual apparatus of sexuality to know that if you touch here, the feeling is good. Why shouldn't Ashley have that feeling? I am not suggesting that anyone touch her in that way -- explicitly sexual touch without full and free consent is not acceptable. But if Ashley can feel pleasure in the way her clothes fit her or in the movement of her clothes or her body, why shouldn't she? To take both her, at this point in her life, healthy breasts and uterus to avoid the possible pain of cramping and other menstruation related difficulties or disabled life-related difficulties is incomprehensible to me. Will menstruation be any more or less incomprehensible to Ashley than any other kind of excretion?
- Ashley's parents call it "grotesque" for her to have a child's mind and an adult's body. That is a subjective and cultural judgement. It is not an objective fact. At what age, then, do people acquire the right to have an adult body? 8 months? 2 years? What if you will weigh, say, 350 lbs in your adult body and be 6 ft tall -- do you still have the right to burden everyone around you?
I was present for a good number of the sessions in which the Convention for Human Rights for Persons with Disabilities were negotiated. I listened to PWDs bear witness to involuntary surgeries on arms, legs, backs, and other body parts. I listened to stories of involuntary hospitalization and medication. I was appalled, but comforted myself that these were stories told by people 30 years and older. That was then. This stuff doesn't happen now. And if it does, it doesn't happen in America. Yes, that was naive.
Below are some important words. You can read the text in full here.
Article 15 - Freedom from torture or cruel, inhuman or degrading treatment or punishment
1. No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment. In particular, no one shall be subjected without his or her free consent to medical or scientific experimentation.
2. States Parties shall take all effective legislative, administrative, judicial or other measures to prevent persons with disabilities, on an equal basis with others, from being subjected to torture or cruel, inhuman or degrading treatment or punishment.
Article 17 - Protecting the integrity of the person
Every person with disabilities has a right to respect for his or her physical and mental integrity on an equal basis with others.
Whether or not the medical "treatment" was justifiable, surely there is a case here that the rights of Ashley as a person independent of her parents' interest in her were not respected.