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.
http://youneedacat.tumblr.com/post/46772164821/so-i-get-woken-up-at-seven-someting-innthenmorning (Amanda’s tumblr blog)
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:
http://youneedacat.tumblr.com/post/46778111359/now-suddenly-theyre-being-nice-and-making-sense
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.
We should not call this about ableism! We should call this viperous attack on baggs what it is! Eugenics!
I hear you. Amanda herself has been using the word ableism to describe at least part of what is happening to her. I think the rest of us are just thinking more in terms of “disabled person” or “Amanda” is having her life threatened. We’ll wrestle with terminology after this comes to a – hopefully – satisfactory conclusion.
I totally agree. There is a culture of “my ideal view of life” is the only way here in VT. They purport to be “open minded” but really, it boils down to, if you are not living what I think is the ideal, I think you would rather be dead and certainly I would rather that you “choose” death. But then, they don’t make it much of a choice, do they?
Got this reply after I phoned to apprise them of their error:
Thank you for expressing your concern regarding Amanda Baggs. We are always heartened to see such strong support for patients from family, friends, and extended communities.
We want to let you know that we are taking this patient’s concerns very seriously, as we do all patient care and safety matters.
Though we are not at liberty to share any patient details or information, we can let you know that we are currently collaborating with this patient on the best plan of care and will treat her with the same respect and compassion we extend to all patients.
Yours,
Fletcher Allen Health Care
Thank you! Will save use your comment in a follow-up blog.
Where’s the link on Rachel Cohen-Rottenberg’s site? You linked to her main page and I can’t find the article.
My bad. The summary and info she posted was on Facebook. I’m never sure how people feel about using links to their facebook page on a very public site like this, so I don’t use them unless I already know it’s OK with them.
I’m too ill to blog, so I put my limited stamina-driven comments here on NDY.
A hospital has staff so that they can provide attendant care 24/7. Twenty years ago this month, I was inhospital for two weeks with an escalation of CFS/ME. I had collapsed. This was after the neurologist in the small community hospital said to me on the phone from the medical emergency room, (he was on call, no neurologist on duty in the small hospital; it was a weekend day), “I’m not coming in for Chronic Fatigue Syndrome”. My own doctor (since 1975, before I was ill) was in CA and could not admit me.
I had severe insomnia (of CFS) that had resulted in the escalation. I was weak and in a lot of head pain among all the other symptoms. The staff in the medical emergency room went to the psychiatric emergency room and they said they would admit me. It was 1993. I didn’t know if I was awake or having bad dreams at times. (I have total recall of it all.) They suggested I go home and think it over. I did. I decided I wanted to go in even if in the psychiatric emergency room and my husband (then partner), took me. I collapsed from weakness when we got me in and I fell out of my wheelchair onto the floor. I got lucky: a visiting psychiatrist who needed extra hours was on duty.
I was examined by a couple of doctors. One asked me why I was talking, “like a computer”. I whispered the explanation as best I could. I was talking in subject and verbs, no little words, because I was so weak. It was discovered upon examination (No one had thought to look in my eyes in the medical ER), I had a severe eye infection in one eye. I was admitted to the psychiatric emergency room, not the medical ER, despite the severe infection. I needed sleep.
I had attendants 24/7 until the 2nd week’s weekend, when the resident shrink, who had my “case”, took off the attendant without telling me. I got word to my husband who called the nursing station and said if I broke a bone, because I was unable to get off the high bed to my wheelchair (used due to CFS/myalgic encephalomyelitis or ME, the name, better, in UK), he’d sue. The staff put a nurse with me for the whole night. They were upset at the student psychiatrist removing my attendant. (Note: the psych floor didn’t have wheelchair accessible bathrooms in the room; I had to crawl from the doorway to the toilet bowl after a day or two with bedpan. No one washed me until I could ask for a bowl of water and towel and did it myself. I then got good attendants.)
Immediately,I had meds put into my eye for the infection, every 1/2 hour for many hours, waking me up. It was feared the eye, already “whited out” would be blind; I have a scar in the middle of my myopic eye’s cornea. It was a psychiatric floor so I received no pain meds for the infection or head pain of CFS/ME. I don’t know why, but people on the psych floor did not receive pain meds. In the 2nd week, I got a room mate, who had a tooth abscess and did not eve get tylenol for pain. Before the nurse was posted with me overnight, a male floor guard sat there, but my roommate helped me off the bed,etc. I am trained in medical biofeedback for allergic asthma attacks, have used it for pain such as during having an abscess lanced on my face since I’m sensitive to local anesthetic, so I used it but it only helped some.
So, for 13 1/2 days of my hospital stay, I had attendants 24/7 from the hospital. My doctor came back from CA during the second week and was rather upset at finding me on the psych floor not medical.
Later, when I read “Osler’s Web” by Hillary Johnson (Crown Publishers, NY, 1995) on the politics of the illness, citing Osler, an English physician whose main point was “listen to patients and what they have to tell you” over a century ago.
I recommend you google search the NYTimes Op Ed article by Hillary Johnson, Oct. 21, 2008, “The Case of Chronic Denial”, in the paper “of record” that has been dissing the illness since it was first suggested how to diagnose it in Mar. 1988 by the CDC, who named it the silly name with fatigue to downplay it. Why? Money. Johnson comes out a says it’s about money,too. For all kinds of illnesses, such as Gulf War Syndrome (which is similar to CFS/ME coincidentally).
All of that to say, I really think all of the denial of care, the suggestion of “why don’t you just die?” is about money. Saving money. It’s not new. But the open dismissal of us as human beings to our face, spoken by “medical” workers in direct hypocrisy of the oath they take to “do no harm”,and, to our faces is new.
Used to be, I’d guess, they just killed us, nobody asking hard questions. I was shocked, for example, recently, to learn that autopsies are no longer routine(i.e.not required) in nursing homes or hospitals in the U.S. It’s about money. So, no one would even know what happened unless they participated or witnessed the error or outright dispatching of one of us to the “great beyond”.
(And that stupid remark, which I have heard when my brother-in-law died in a nursing home, age 64, from something during the night;he was there for Parkinson’s because his spouse didn’t want him, ablebodied person say, “Well, at least he is not suffering any more.” gets trotted out for one of us, of any age after the news is given that one of us is dead. Is there a gender difference, I wonder? Or in severe crisis during disability, do we females and males become equal?)
Lastly, I didn’t spend time in this long comment on the stupid remarks of the kid shrink (who I asked, “Why did you take the attendant off and not tell me?” His reply, “I wanted to see what would happen.” My reply, “No one will ever trust you.”) such as “you’re an artist, so you must be weird, all artists are weird”.
Although “assisted suicide” is a new “push” as the final fiscal solution for us, the severely disabled, so many medical errors of judgment happen ….
(Techies, please put on some edit function.)
I realized after I “Post Comment” and read it (easier
than in “raw format”), that I’d left out the end of the
sentence about what I learned from reading “Osler’s Web” , that
people with CFS were being put into psychiatric hospitals
for CFS “not infrequently” in 1993, by doctors who couldn’t
understand, in their ignorance of a “new” disease that doesn’t
have a blood test, why people who “shouldn’t be sick” are
saying they’re ill and “laying around” instead of obeying
the doctors and shrinks and stopping acting sick. (I was lucky
until the escalation.)
I also forgot to say that my husband, Ralph, was so great during my escalation and hospital stay, that I decided I wanted to marry after almost 14 years “as a couple”. He agreed. We were the first marriage in the hospital’s beautiful 1920s chapel some weeks later.
I became aware of Amanda some 5 years ago. This is not the first time she has felt the apathy of the Medical community. The story I just read makes me nausiated. I have been a nurse for 22 years and am unable to continue in this field because I can’t work , in good conscience, in a business that cares so little for it’s clients and even fellow staffers. The things the staff have done to her in that hospital it tatamount to abuse and their employment should be terminated and their lisences gone after. I want to help Amanda and I WILL call the number above and let them know how I feel about their treatment of this inteligent HUMAN BEING! Makes me ashamed to be in health care.
I called the hospital and they denied that they had a patient named Amanda Baggs.
My bad. Others that I linked to gave instructions to say “she might be signed in under a different name.” Evidently, that was enough to stop the denials. The days I posted those alerts I was pretty exhausted for unrelated reasons. Not an excuse but an explanation.
She is signed in under another name for safety reasons (preventing certain people from visiting). One of her friends (I think Webmuskie) explained this in another blog posting, although I don’t remember where.
Now they operated on her without effective anesthesia and are trying to dump her in a nursing home before her pain is even controlled.
http://webmuskie.tumblr.com/post/47036621965/they-want-to-discharge-her
http://youneedacat.tumblr.com/post/47066004981/so-today-was-interesting