We believe that the main value that Ashley's life has is in the context of being part of her family and her family's love, so we feel strongly about her continuing to be an integral part of our family.(emphasis mine)
Ashley X's parents follow up this line of thinking with the unproven notion that keeping "Pillow Angels" small will keep them from being sent off to institutions, and kept in the family for a longer time.
There are many things about growth attenuation that I can find fault with. It's easy to do. At the most basic level though, it is the perception of people with disabilities as somehow having to suffer through a checklist assessment of their place on the scale of humanity--as if there is one--that I find most objectionable. People with disabilities are always left to prove their worth, even their humanity, based on assessments made by "standard human type A", the walking, talking, right thinking, money making, socially acceptable homo sapiens. Deviation from the mean is deadly, in some cases.
And so to Ashley X's parents I say this: I have a typical daughter as well as one with severe disabilities. I do not find that "the main value" of her life lies strictly in the context of family life. Now, as a young adult of 22, she is on her own, trying her wings, living in her own little place with her own first "real" job. It is for her to move away from the family and be her own person, carve out her own place in life, find new relationships. Her life has value because she has life. She doesn't need to prove that to anyone.
The same is true for my daughter with severe physical and intellectual disabilities. She may always need support, here at home with me or in some sort of placement outside of my home, but her life has value. Period. She deserves to be seen as a person carving out her own place in life too. Her dependence does not make her a non-person, whose only value is based on the assessment of others around her. She is not a burdensome adjunct to my life or to life of her caregivers. She has a place. She has a mind, however compromised. She has ability, however subtle. I honour that. I expect and teach others to honour that too.
Sophie is real. She is a real, live person. She is a force to be reckoned with. She is not, nor ever will be anyone's Pillow Angel.
A little six year old girl had her uterus, breast buds and appendix surgically removed. She was then treated with high dose estrogen hormones to stop her from growing. This appalling "treatment" was instigated by the parents, supported by some physicians, illegally performed by the hospital, and is now being pushed as a "treatment option" for severely disabled children...mostly girls. This is perceived as a "solution" for the "problems" of the severely disabled. What it is, is a gross violation of their human rights.
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If you want to put your own ideas opposing the Ashley Treatment here, email me your post and I might put it up, with a link to your blog if you have one.