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.
or 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.
- Ashley is doing well, healthy, happy, and lovingly cared for.
- The “Ashley Treatment” is intended to improve our daughter’s quality of life and not to convenience her caregivers.
- 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.
- We wrote the article and published this web site to inform and help other families of “Pillow Angels” who might benefit from our experience.
- 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.
- Please make sure to read the five emphasized paragraphs in the first two sections below, since they convey the essence of Ashley’s story.
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.
More 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”.
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.