Amanda Bagg’s name and work should be familiar to a lot of people in the disability community. A lot of people might remember reading her blog essay “If I am killed” on our old site, where it was reproduced with permission – and will be put up again in the near future. Many more will remember seeing her youtube video “In My Language.”
Amanda Baggs is an autistic woman who writes brilliantly, doesn’t use speech as her primary mode of communication and also lives with a variety of conditions, one of which has become quite serious in terms of being life-threatening. Her friend Laura T, aka “webmuskie” around the internet, wrote us that after the last of several bouts with aspiration pneumonia, Amanda had been admitted to the hospital to treat the effects of the gastroparesis that was at the root of the problem. The understanding going in was that this would involve the placement of a feeding tube, which would help her increase her food intake and lower the risk of aspiration.
I’ll excerpt some of the info from Amanda and webmuskie’s tumblrs, but I first want to share this excellent summary of the situation from Rachel Cohen-Rottenberg:
There is a very bad situation going on with disability rights activist Amanda Baggs (who is also my friend and colleague).
Here’s the rundown: A med student tried to argue her out of having a life-saving procedure — the insertion of G-J tube. A nurse laughed when she said that she wanted everything done to save her life. The hospital nearly didn’t admit her at all because they alleged she required a 24/7 aide. The message is very clear: Your life isn’t worth the life of an able-bodied person.
Amanda’s latest update is that, after her DPA advocated fiercely on her behalf, the hospital has changed course and is now taking about inserting the feeding tube.
Same place but turned out that was a program designed to limit employee web surfing that ended up on the wrong wifi. But this place sucks. Most hospitals do. Understaffed even when there’s good people. Messed up. Too sick to explain this moment. But culture of death here? Disability hate? Yes. This is the same place that tried to refuse me entry because I didn’t have a 24-hour staffer willing to stay with me from my DD services agency. That says it all. And they think its better sometimes when ppl die. Healthcare professionals don’t admit their bias but they’ve found they think our quality of life is terrible at the same Time we think ours is fine. It influences them. This is why I got into disability activism. I somehow never thought it would be me again, in the position of being treated as better to let me keep aspirating than try a G-J feeding tube.
They’ve talked to me what a huge choice it is. I made the choice easily months ago. They been talking feeding tubes since I was first diagnosed. No surprise here. They tell me it might not work. They tell me consider alternatives. The alternative right now is pneumonia and death. They tell me all this bullshit. Underneath the bullshit is ideas they aren’t willing to admit they have.
Ideas like: No quality of life. Better off dead. Let things take their course. No matter what we do she’ll get sicker and sicker and die. So might as well do nothing. Pretend it’s not happening. Pretend the ground glass appearance of my cat scan is just a sensation I imagined. Pretend pretend pretend.
For the moment, it seems like the medical staff is laying off the “you’re better off dead” pressure. For the moment. You can read it in this blog post:
Amanda also posted her own account of her hospital stay last night. You can find it here:
So – in the meantime what has been done and what can be done?
First – the following from Webmuskie has been shared widely (hospital contact info):
It may be time to add angry phone calls to the hospital to the prayers come Monday morning. (the switchboard # is 802-847-0000 FYI, though you won’t be able to find her in the directory for reasons of privacy. Not a problem because come Monday the hospital administration will surely know who we are).
As a result of that info, countless people have called. ASAN President Ari Ne’eman was one of those callers, communicating ASAN’s concern for Amanda’s welfare and that they would be tracking her case very closely. So please feel free to use that phone number and register your concern, along with countless other disability activists.
In the meantime, NDY’s Diane Coleman has written to allies at Disability Rights Vermont (the Vermont Protection and Advocacy agency) and at the Vermont CIL. It now being Monday, we’ll try to follow up to see what else can be done at a local level.
In short, just because the pressure to refuse a feeding tube (and die) has eased for the moment is no reason to let up. It’s probable that the pressure brought to bear by grassroots activists over the weekend had quite a lot to do with the respite Amanda is experiencing now.
While we received alerts from many people about Amanda’s situation, I’d like to thank Webmuskie, Kassiane, and FridaWrites for the information we happened to get first. And also to Rachel Cohen-Rottenberg for providing that excellent summary. Most of all, of course, I want to thank them – and others – for getting grassroots activism and outrage going over the weekend. I am very sure it made a difference and hope that all of our continued activism can turn this situation around permanently.