Parents React To Media Coverage of Disabled Child’s Controversial Treatment via Blog

For all the other big “new media” stories that have hit the blogosphere over the years, aside from politics and the Iraq war, I believe this may well be the biggest story peaking the interest of most people and spurring them to online discussions.

The blog by the parents has received 1,477 comments and the MSN message boards have 1,955 messages by 860 authors.

Will this eclipse the Terri Schiavo story, at least with regard to online social media discussion? Perhaps that’s not a fair comparison as the Schiavo story was a political story, after all. And, the Republicans no longer control Congress.

Ashley’s story has particularly galvanized the disability community. The reason for all of this may simply be because more media outlets have adopted social media tools on their Web sites. We’ll see.

For the past week, I’ve seen references to this story on TV and in the newspapers.

The parents have been overwhelmed by media attention. They started a blog to answer questions. So far, the one post has received 1477 comments. They are essentially handling crisis management through their blog. The post contains this statement to the media in that MSN blog. It actually comes off looking sort of like a social media news release.

(Note to members of the media and our web visitors: We are getting more emails and requests than we can possibly handle– more than 1500 in the 48 hrs since the LA Times story broke out. We want to attend to our lives and our kids as we should. This web site received more than a million hits and about 1000 comments were added in those 48 hrs! We truly appreciate the overwhelming support and the thoughtful comments we’ve been getting. Rest assured that we will read every one of your comments and they might be used in the future to help other families through a similar decision process.)

The long post in the blog features a key talking points list from the parent’s side of the controversy.

  1. Ashley is doing well, healthy, happy, and lovingly cared for.
  2. The “Ashley Treatment” is intended to improve our daughter’s quality of life and not to convenience her caregivers.
  3. Providing our daughter with this treatment was an easy decision since the benefits by far outweigh the risk and short term discomfort associated with the surgery.
  4. We wrote the article and published this web site to inform and help other families of “Pillow Angels” who might benefit from our experience.
  5. With the overwhelming thoughtful support that we are receiving (90%+ of the comments and emails) we feel better than ever about what we did for Ashley, and we certainly do not feel defensive about it.
  6. Please make sure to read the five emphasized paragraphs in the first two sections below, since they convey the essence of Ashley’s story.
Ashley’s parents say the effort is a more humane solution for the girl who has an irreversible brain impairment called static encephalopathy.

Fox News had a pro/con debate on The Big Story. It is a called “Frozen in Time.” (Don’t know how long that link will stay active.) I know. It is Fox. But, the debate does show both sides of the issue.
Click the image below for a larger version. The parents have actually created a media release statement for the photos in their blog, too.

Ashley In Her Wheelchair 2006More about the blog: The parents have actually posted a quite lengthy explanation of their side of the story in their blog. It is located at MSN Spaces in the blog The “Ashley Treatment”, Towards a Better Quality of Life for “Pillow Angels”.

There is much more out there in the way of coverage. See Parents defend treatment to keep girl child-sized from CTV.ca (Canada). Also, here is the link to 276 different stories in Google News.

Let’s face it. This is a difficult story to address. I am willing to guess that – at Camp ASCCA, for instance – we would have staff, counselors, parents and campers with wildly differing views on the actions taken by the parents and doctors. Also, as medical science goes forward, these controversial treatments are likely to become more common.

The story is very emotionally charged. Here is an example of a small town newspaper site – in Beaufort, S.C., nowhere near Seattle – and the story spurred on 739 reads by visitors and 35 wildly differing comments (as of this writing).

I am not a medical ethicist, to be sure. I can see both sides and understand where their feelings and opinions are coming from on this story.

Several things interest me about the story. First, how the parents and news outlets are handling the story via social media tools. That Beaufort newspaper is hosted on the Drupal platform, for example. The story I linked to actually comes from a user’s blog – jedahetoca’s blog – not the newspaper’s staff. Many news sites have video from their newscasts addressing the story. Online news sites are filled with stories, if only the AP syndicated story. Opinions are all over the place.

Second, I do have experience working with people that have these sorts of disabilities. I know that they can have a comfortable life – even exciting life – without any of the treatments Ashley has received. I also try to put myself in the shoes of the parents (caregivers).

I don’t mean to waffle or ride the fence on this issue, I just don’t know how to feel. On the one hand, I remember a camper of mine at ASCCA, long ago. He had a feeding tube and was quite the active camper during the summer back in the 1980’s. However, he was ambulatory and high functioning. I also remember my first two campers who were encephalopathic. They were both in wheelchairs, profoundly retarded and also had epilepsy with gran mal seizures. However, they did not have feeding tubes. I took them horseback riding, swimming and canoeing, for example.

Then, I remember a camper who lived well into his fifties. His parents took care of him, with little help from anyone else, and he lived life in bed and on a stretcher. We took him tree climbing, horseback riding and canoeing, among many other activities. I kid you not.

So, how do you feel? Please click the “Comments” link below. Whether you’re interested in the social media / citizen journalism aspects of the story or the overall ethics of the treatment, I’d like to hear from you.

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0 thoughts on “Parents React To Media Coverage of Disabled Child’s Controversial Treatment via Blog

  1. Glenda Watson Hyatt

    Wow, this is the first I’ve heard of this story and, after reading the parents’ blog and several comments, mixed thoughts and emotions are running through me at the moment. I can appreciate the parents’ perspective and that caring for their daughter on a daily basis is difficult and exhausting. No doubt the lack of means of communication is one of their biggest challenges as their child cannot indicate her needs or where she hurts. But, as a person with a disability, a woman with a significant physical disability, I find “Ashley’s Treatment” terrifying and saddening; in fact, I felt nauseous as I was reading and I was beyond tears.

    So many questions come to mind: the only way to protect her from sexual abuse is to de-feminize her? Body parts were removed to prevent possible disease in the future. How far will this go, perhaps not in Ashley’s case, but with others? Will this become society’s solve for managing the care of its severely disabled citizens? Why aren’t desperately needed support systems being providing so that parents with special needs kids don’t feel the need to do it all alone? If it takes a community to raise a child, where is the community for the child with a disability?

  2. Eric Eggertson

    Robert: I’m also hesitant to leap in and say categorically that the parents have done the wrong thing. The whole surgical scenario seems so calculated and creepy, it’s hard not to respond with an instant emotional rejection of their decision.

    What I can say is that our society seems appalled when parents make tough decisions that have life-or-death effects (or big impacts on their quality of life) on their children. There are always arm-chair quarterbacks pulling out statistics that show that one in 1,000 kids can recover from a certain condition, so parents who assume their kid is one the 999 should be ashamed of themselves for any actions they take.

    Sometimes parents have to decide if a kid should have surgery, or some herbal therapy, or behaviour modification, or aggressive radiation and chemotherapy. Parents don’t always make the right decision. Hell, parents don’t always make the right decisions about their own health. Sometimes there is no right decision.

    Having been a parent for 20 years, and having listened to many people explain to me what decisions I should make about my kids, I’m loathe to add my condemnation. I know I would never have been able to make the same decision they did, and I don’t accept their reasoning for some of their actions, but I’m not them.

    The cousin of a co-worker of mine went to jail for 10 years for killing his severely disabled daughter, based on his feeling that she was facing a lifetime of chronic intense pain with no relief from the system. There were other options, but he couldn’t see them, and he felt he was saving her from a descent into a living hell.

    Anyone who feels these parents have acted unthinkingly, without agonizing over their decisions, is oversimplifying the situation.

  3. Robert

    Glenda, thank you for commenting.

    Knowing that you share, in some ways, the disabilities that Ashley has, your words strike a strong chord.

    All of your questions are spot on, too. The one that strikes so hard is the idea of community and their role in raising children. As we know, there are so few resources for parents of disabled children to reach out to for services. Add to that the reality that a disability in a family can take the family’s living scale from upper class to lower middle class in the blink of an eye. Forget the effect it can have on the family over time regarding finances.

    That’s one of the reasons I’m such an advocate for nonprofit organizations providing services for people with disabilities.

    Eric, I agree with your points, too. This story tore me apart. I do not have a child with a disability. In fact, I’m not even a parent. So, I’m hesitant to condemn the parents. My only feelings come from my experiences with people that have disabilities.

    As I described in the post, there are many children that have attended Camp ASCCA with extremely severe disabilities. We know, from reports back from parents and caregivers in hospitals and nursing homes, that these children and adults seem to respond, in a positive manner, to physical activities. Still, without the ability to communicate, do we really know how the child feels?

    It is so frustrating and confusing. I obviously don’t know the answers.