Before I start with the specifics, here’s the short version – due to the overwhelming response of disability activists and allies, things changed for the better in terms of communication and setting an agenda for surgery – placement of a feeding tube that will hopefully prevent the frequent bouts Amanda Baggs has had with aspiration pneumonia. Amanda might be having surgery as I write this, since one of her posts (not included below) that her surgery was scheduled for late morning or early afternoon. It’s about 30 minutes after noon right now.
I think it’s best if I share some of what Amanda’s written over the last twelve hours or more for folks to get a sense of where things stand:
In “Oh also wanted to thank all the ppl I don’t even know,” she wrote:
Who called the hospital on my behalf. The woman from Disability Rights Vermont who, free of charge, sat through all my doctor visits yesterday. All day long. Etc.
You did have an impact. One of my doctors said there’s an abrupt change in my charts starting when ppl started calling and stuff. I noticed too because they turned from hostile to conciliatory on a dime.
Just be aware even if my surgery goes perfect there’s lots more patients to protect.
There might have been other people who contacted them, but NDY President Diane Coleman emailed the director of the organization on Sunday. She’s been working with Disability Rights Vermont and other organizations opposing proposed assisted suicide legislation.
And aside from posting her situation on the blog and disseminating via facebook and twitter, that was the extent of NDY’s role.
This effort was the result of countless people. Autistic activists and bloggers spreading the word and asking people to contact the hospital all day Sunday. The countless people who did call the hospital. Everyone who blogged about the situation. That would include Meega Na La Queesta at Aspiesforfreedom, Paula C. Durbin-Westby, and lots of others I’m sure to have missed. Stephen Kuusisto has “a disability meditation” out today as he (and all of us) wait for the outcome of the surgery.
Kathleen Seidel went from her home in New Hampshire to the hospital to stay with Amanda for a couple of nights.
And of course, the real reason all of these good things happened is because of Laura T. – Webmuskie – who emailed people all day Sunday to get everyone informed and ready to intervene in whatever way they were able.
I’m cautiously optimistic that “we” – all of us – won this one. It’s truly amazing what so many people can do when we’re focused, outraged, and more than a little bit scared.
They did surgery on her without proper anesthetic and are trying to dump her in a nursing home.
http://webmuskie.tumblr.com/
That they had the surgery is the good news. But the bad news is: they did not use appropriate anesthesia during surgery (they used something she had clearly TOLD them DOES NOT WORK for her) so she continues to be in severe pain because of it. And the hospital has been trying to discharge her to a nursing home (instead of her own home). Continuing updates at Amanda’s own blog at http://youneedacat.tumblr.com/ and also at her advocate’s blog http://webmuskie.tumblr.com/
People who want to call the hospital Amanda is at can dial 802-847-0000. People who want to leave a comment on their Facebook page can do that at https://www.facebook.com/FletcherAllenHealthCare