The Other Invisible!

This morning I heard a story on my favorite newsradio station, WSB that at first thought sounds awful, but if listeners take a close look at what the parents have to say, is really not a bad thing.

There is this family in Seattle that has a daughter named Ashley. She is chronologically nine years old, but mentally and emotionally she is about 3 months old. You see, Ashley's mental and motor skills stopped developing for no discernible reason. According to her parents, "Doctor’s call her condition “static encephalopathy of unknown etiology”, which means an insult to the brain of unknown origin or cause, and one that will not improve." She cannot sit up on her own, hold a toy, or move herself in anyway, and is fed via tube.

What is making the media take notice isn't that her family is taking care of her, loving her, and making life extraordinarily good for her. No. what the media has noticed instead is a medical procedure that her parents decided to try in order to help her have a more comfortable life. This procedure included removing her uterus and developing breast tissue as well as estrogen treatments. They call it "The Ashley Treatment." Her parents go to great lengths to explain the rationale and the treatment on their blog, "The Ashley Treatment:" Toward a Better Quality of Life for "Pillow Angels." As usual, the media doesn't read very closely or compassionately. Instead, they pick up on the idea that is the most sensationalist. The article in the Seattle Times this morning begins with "In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size." If we take what the media says at face value, her parents sound like horrific, selfish people.

It's too bad that Lindsey Tanner, author of the Seattle Times article, didn't focus on the entire explanation given by Ashley's parents. If she had, she might have noted that they emphasize several times that this treatment was for Ashley's benefit, not because they wanted to make her a more portable size. They give a detailed explanation of exactly why they did what they did--and it makes sense.

"In addition to height and weight issues, we had concerns about Ashley’s menstrual cycle and its associated cramps and discomfort (she was showing early signs of puberty--don't scoff, I started to develop at age nine). We also had concerns about Ashley’s breasts developing and becoming a source of discomfort in her lying down position and while strapped across the chest area in her wheelchair, particularly since there is a family history of large breasts"--as you can see, it's not just about portability.

The media has questioned the ethics of this procedure, and in doing this have overstepped their bounds. Who are we, people who are not dealing with the issues that these parents are having to deal with, to point fingers and accuse Ashley's parents of being selfish or, at worst, abusive? Do we know what's best in this situation? Do we think the government, or the media has a clue? Why should the media or even the American public chime in on this issue?

I guess I take issue here because as a parent I often feel that the media and the government thinks its their right to second guess my decisions when it come to my children. Yes, I know there are parents out there that are not competent enough to be parents, and yes, I know there are parents out there with totally selfish motives who harm their children. Interestingly enough, the media is only interested in those sorts of parents when they harm their children in sensational, in-your-face ways. The children, who suffer with parents who are emotionally abusive (it's the quiet abuse) or are distant, fall through the cracks because this sort of abuse is just not splashy enough to get the media's attention. When the media cannot find actual cases of horrific abuse, they move on to parents that have to make hard decisions and then demonize them and their decisions. Ashley's parents should not have to answer to the entire world simply because the media is too stupid to understand their entire explanation.

I am praying for Ashley and her family. The thing that frightens me with all of this is that the government will poke its nose into this situation and try to become Ashley's guardian. It will not take into consideration that Ashley is in a home with people who know her needs, and love her to pieces. I also pray that many people will take the time to do like I did and read her parents' blog for themselves before they pass judgement based on what uninformed newspaper reports have spun about these folks.

|  Add to del.icio.us |  digg this

• #1 Comment from knowwriter 
  1/5/07 1:03 PM | Permalink

  And this is why I quit journalism. As a writer we may have written and understood the full explaination but as an editor it's the sensational that sells that papers.
  http://journals.aol.com/knowwriter/AmazingAdventures