"Ashley's Treatment" & Abortion Rights

Posted by Amie Newman at 7:28 AM on February 16, 2007.

Her parents lovingly named her their "pillow angel" because she is "so sweet and stays right where we place her -- usually on a pillow." But the simple and ethereal term belies the controversy that has surrounded Ashley, the "pillow angel", and her parents for the last six weeks.

In January of this year, a story broke that unleashed a media torrent and a worldwide discussion outwardly centered on medical ethics. Unpeel the layers, however, and you find a story that shares a great deal in common with the quest for reproductive justice and what it means to be able to sincerely and lovingly make a choice that may seem, to outsiders, the wrong choice -- and therefore the unacceptable choice -- but an individual's loving choice all the same. At the center of the story...

... Ashley, a now nine-year-old girl who was diagnosed at 3 months old with "static encephalopathy of unknown etiology" -- an unchanging brain abnormality that sentences Ashley to live the mental and developmental life of a three month-old infant while her body continues to age normally. Ashley cannot move or talk but she is expected to live a long life. To read the story of Ashley's early life on her parent's blog is both heartbreaking and beautiful.

Ashley's parents' blog wasn't begun to keep family and friends up to date on Ashley's progress. It wasn't created as a cute way to share photos or detail the family's most recent vacation. Their blog was born of a medical decision, weighted with heavy ethical questions, made by the couple in consult with their doctors at Children's Hospital and Medical Center in Seattle three years ago.

When Ashley was six years old, in 2004, her parents presented doctors at Children's Hospital with an unusual request: to surgically stunt Ashley's growth; surgeries that would involve a hysterectomy, removal of Ashley's breast buds, and "growth attenuation" through high doses of estrogen. The couple's reasoning for what they call the "Ashley Treatment" was clear. They were looking to improve Ashley's quality of life and after many years of caring for their daughter in her static state, they felt certain they knew what she needed. According to their blog,

Unlike what most people thought, the decision to pursue the "Ashley Treatment" was not a difficult one. Ashley will be a lot more physically comfortable free of menstrual cramps, free of the discomfort associated with large and fully-developed breasts, and with a smaller, lighter body that is better suited to constant lying down and is easier to be moved around.

Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc…

After Ashley's parents unusual request, doctors at Children's Hospital convened an ethics panel that eventually agreed to heed their request for the "Ashley Treatment" but not without an intense and heated debate. Several months later, Ashley underwent the surgeries and estrogen treatment.

Now, three years later, the story has been discussed, debated, judged and dissected by medical professionals, people with disabilities, parents with disabled children and the general public -- all with strong opinions and thoughts about whether what Ashley's parents did was right or wrong.

But Ashley's parents remain resolute in the rightness of their decision. There are those who are sure, without a doubt, that the choice Ashley's parents made was completely wrong. Disability advocates and people with disabilities have their own valid arguments to make against the "Ashley Treatment." Others feel compelled to make broad statements about what Ashley's parents were really thinking -- that her parent's decision was based on their own personal ease of life, making their choice invalid. There are those who say there are other options and that her parents did not take full advantage of those options. Finally, there are those who judge the parents more passively, declaring the sad state of social services for not providing parents of disabled children with more access to high-quality services, "forcing" parents to make a choice like this. Some of these protestations (though certainly not all), sound strikingly similar to those made by anti-choice advocates about women who access abortion.

The decision made by Ashley's parents was unmistakably rooted in love. It's clear from their blog. It's even clear from the articles and commentaries that disagree with their decision. They were unabashedly certain, deep-in-their-hearts sure, that what they were choosing stemmed purely from their love of Ashley. We can choose to debate whether the parent's choice was the result of an unbending love for Ashley but put simply, who are we to judge? Is it our place to intricately examine whether these parents, clearly competent and worthy, were acting out of love? When a woman accesses abortion, we hear the same arguments. She does not "love" the fetus growing inside her because, if she did, she wouldn't have an abortion. Barring evidence of abuse or harm, how can one person judge what another person feels for a child whether growing in-utero or living? Some women feel tremendous love for their unborn child and know, in their hearts, that they are acting out of love when they choose abortion.

Unquestioningly, Ashley's parents stood to "benefit" from the "Ashley Treatment" but does that make it any less worthy of a choice? Are we to say, then, that their decision is less authentic because they somehow don't deserve to improve their quality of life as well? Again, this is an argument we hear repeatedly from the anti-choice movement. Women access abortion because it's "convenient"; it makes their lives "easier." Abortion, much like Ashley's surgeries, is not easy or convenient.

Abortion is a medical procedure that requires a great deal of emotional and mental energy -- both in the decision making process and post-procedure when the woman may feel a range of emotions. To say that somehow the "Ashley Treatment" would make Ashley's parents lives easier and is therefore less valid, is to presume to know the personal and intricate details of a family's or an individual's life -- a dangerous perspective that keeps a family's or an individual's freedom open to the whims of whether or not society believes they "deserve" it.

Ashley's parents made their decision in consultation with Ashley's doctors. It is a tenuous place in which we reside when strangers feel they can comment on one family's personal medical journey with second hand information relayed through a media machine. Again, when a woman makes a decision to access a safe, legal abortion in this country, she does so with the support of a physician. To enter into a woman's private decision between herself and her doctor is unwarranted and most certainly impinges on one's right to privacy -- a right Ashley's parents were forced to surrender when their choice was made public.

All of that being said, I have no doubt that we do not yet live in a society that makes life easy for those living with disabilities or the caretakers of persons with disabilities. I also agree that the medical ethics of performing surgery on a person who cannot advocate for himself or herself deserves to be strongly debated. But I cannot concede that we can paint every one of these scenarios with a broad brush and disallow any family to make a decision that they truly believe to be the right decision for their loved one and themselves. It's wrong when you talk about it in a reproductive justice frame and it's wrong when you confront it in a disability frame.

I will leave you with a quote from one of the commenters on Ashley's parents' blog. It is an incomplete thought, I think, because I truly believe that most people in our society treasure free will as central to a healthy society and have the compassion to allow individuals and families the freedom to exercise that right. But it is a beautifully concise thought all the same that reflects at least part of the reason why reproductive justice is not yet a reality in this country and why Ashley's parents have had to be thrust into a worldwide spotlight when they only want to be left alone to care for their children in the best way they know how:

Isn't it such a shame that people feel they have the right to trumpet their opinion without being fully in possession of the facts. A sad indictment of today's judgemental, accusatory society. …

Tagged as: reproductive rights

Amie Newman blogs for RH Reality Check.