Ashley is a 9-year-old girl with severe disabilities. She has the mind of an infant and cannot walk, talk, or feed herself. Her parents made the decision to keep her in a child's body forever by using hormones and surgical procedures. They insist that it was done to protect her quality of life, not for their own convenience as some have alleged. However, I believe that the truth is more complex, and in some ways, more disturbing, than either of those excuses.
The media has been emphasizing the stunting of her physical size, which I consider to be the most justifiable portion of what was done to Ashley. Having gained about 50 pounds over the past two years, I can attest to the fact that weight makes life with a disability more difficult. It is harder for me to care for myself, and harder for me to get back in shape and regain the abilities I have lost. Moving my body is tiring and at times, painful. I am more prone to various health problems since my weight gain, and can see how that would be magnified exponentially in a completely immobile person. It is also more difficult for others to assist me - and as a person with full mental abilities, I feel bad about that.
It does seem that reducing Ashley's adult height/weight offers benefits for her, that it may keep her healthier and more comfortable. As such, simply limiting her size may not be unethical - if doing so has no negative health consequences. However, they seem to be inducing a condition known as primary amenorrhea, which leads to osteoporosis and other serious health problems. Due to her immobility, Ashley would already be at high risk for osteoporosis, so she is in real danger now. In time, her bones may become so fragile that just moving her could lead to fractures. She would then be extremely limited and unable to participate in the activities for which they kept her small, as well as suffering pain whenever a fracture occurred. Still, their reasoning behind this portion of the treatment seems more solid than the rest.
However, based on what I have read, I believe that the primary goal of her parents was not to keep her small, but to keep her physically a child in all respects. You see, Ashley's parents didn't just use estrogen to halt her bone growth, they also had her undergo a hysterectomy and removal of her breast bud tissue, which means she will never develop breasts. They completely desexualized their daughter and transformed her into an eternal child. They have justifications for this that supposedly benefit Ashley, but they fall apart quickly when one examines the non-surgical alternatives.
They believe that having a period would have been uncomfortable and difficult for Ashley, which makes sense, but they could have put her on Depo-Provera or continuous birth control pills. Neither of those are perfect, and carry some risks, but they are an alternative to removing body parts. The breast bud removal was supposedly done because large breasts run in the family, and her breasts would have been generally uncomfortable and "in the way" of her wheelchair chest strap. Also, breast cancer runs in the family. I find these reasons ludicrous - they could have strapped her into the wheelchair some other way, and done breast reduction surgery IF and only if she had discomfort from her breasts. And regarding breast cancer, well, I guess my parents should have done the same to me given the fate of my mother, grandmother, AND great-grandmother. Few people are as high-risk as I am, but I have chosen to keep my breasts, and be monitored carefully. They could easily have made the same choice for Ashley.
Ashley's parents also seem to have an extreme fear that their daughter will be sexually abused, and get pregnant. It is true that an alarming percentage of disabled people, especially mentally disabled and/or institutionalized women, are the victims of abuse, so their fears are not unfounded. However, their "solution" to this problem is an ineffective one. They believe that not having breasts will make her a less appealing target, but they forget that a pedophile would actually be more attracted to her as a result of their choices. They also fail to recognize that rape is about power, not sex. A severely mentally disabled woman is a helpless victim, whom an abuser will be attracted to because he or she can feel power over her. Whether that woman has breasts makes no difference at all.
To remove a woman's sexual organs because she might be sexually assaulted is the worst possible form of "blaming the victim." The solution is not to render severely disabled people sterile and sexless, it is to stop the abuse. Hiring quality, well-paid caregivers, placing cameras in group homes and institutions, accountability on the part of management, and severe sentences for offenders are just a few ideas that would make a difference. No child or woman should be mutilated because of what someone else MIGHT do.
No, keeping Ashley small, liftable, and bedsore-free is not what this is about. Ashley's parents seem to have a distorted perception of her reality - they refer to her as a "pillow angel", as if she were a pet or a doll. They actually say that they are disturbed by the idea of a "child's mind" having an adult body. They want their daughter to remain forever a child, and in doing so, they are denying her reality. Ashley is a 9-year-old child right now, but one day she will be an adult. A severely, profoundly brain-damaged adult, yes, but still an adult. Society doesn't like to see people with disabilities as adults. We're not as cute, or pity-inducing, and there's that pesky idea that we might have rights - even the most severely impaired of us, the ones who can't express what they want and need. In those cases, someone else has to decide what is in their best interest, but that person should be someone who sees them as a whole, adult human being. It should not be the parent who copes with their grief by seeing their daughter as a cute little pillow angel.
Doing these surgeries forever deprived Ashley of any form of sexuality or womanhood. It is true that she could never have consented to sex or pregnancy, but she might have engaged in self-stimulation. She would not have had an understanding of this beyond that it felt good, but it was still taken from her. She will never have the feeling of being in a woman's body, of having soft breasts and curves and an instinct to love and care. These things are primal; they do not require intelligence or awareness to experience on a basic level. Again, this is something many people would rather not think about. I have read many forum postings from parents who are upset about their mentally disabled teen or adult's "inappropriate" sexual behavior. But most of the time, what they are disturbed by is that their son or daughter HAS sexuality, not just that it is being expressed in a public or problematic setting. In this case, the parents seem completely unable to deal with the idea of their daughter being a woman one day. And thanks to the medical establishment, they've now created an illusion to support their delusion.
I know that being the parent of a disabled child can be hell at times. It certainly was for my parents, and I'm highly intelligent and have much more physical ability than Ashley. However, there are resources out there to help. Ashley's parents claim that they cannot find good caregivers for her and that was part of the reason for their decision to keep her small so they can care for her longer. I require an assistant to help me every day, and yes, it is HARD to find and keep a good person. God knows I've had some lazy ones, some jerks and even one who stole and forged my checks. But I've also had some wonderful assistants, including my current weekday person. It can be done, if you screen prospective employees well, treat the person with respect, and pay them a decent wage. Ashley's parents are professionals; while that doesn't make them rich, it should mean that they can supplement state-funded caregiver wages by a few bucks an hour. And even if they HAVE tried every possible caregiver option and service, the solution then is to campaign for more services, NOT has drastic procedures done on your child.
In fact, if anything good comes out of this story getting so much press, I hope it is that the general public learns about the struggles disabled people and our families face. Despite my criticism of Ashley's parents, I do feel compassion for them. They must have felt like they were in a desperate situation to do something like this, although they claim their decision was an "easy" one. The problem is that they decided to change their daughter, when what they really needed to do was demand that the system change, for their daughter and all the other sons and daughters. We need universal health care in this country. We need funding for in-home care so that people with disabilities can live in their homes and with their families instead of in institutions where they are isolated and vulnerable to abuse. We need laws guaranteeing the right of bodily integrity and freedom from unneccessary surgery to ALL people with disabilities, including the profoundly impaired. Then, I hope, parents of children with disabilities will feel free to let their children be who they are, not change them based on fears for their future.