20 April 2013

Why I'm Afraid of Doctors

Trigger warning: Ableism, disability slurs (specifically, the r-word), profanity, violence, and medical malpractice/bad medical situations.

This is a piece that I performed for Saxa Slam 2013 and Diaspora 2013. I wrote this in response to what happened is happening to Mel Baggs, for those who've been following the story. 

* Note from 2014: Mel is referred to by the name zie was previously known by in this poem. I've corrected the reference in the text here, but left the original words in the poem intact for now. That might change. 

Image description:
A young Asian woman with chin-length straight black hair and rounded rectangular glasses from about the waist up appears in the center of the photograph. She is speaking, with her lips open mid-word, looking into the distance at something past the camera. She is wearing a light pink collared button-down untucked dress shirt with ivory translucent buttons, a black suit jacket unbuttoned with a small circular white pin on her right lapel, and light olive green pants. She also has a blue lanyard around her neck with the words "UNH Institute on Disability" printed in a sans serif font in white, as well as a thin white string with a plastic name badge holder with a white name badge that says "Lydia Brown" in big letters in the middle and "Commitment to Diversity Awards 2013" in smaller letters on the top, as well as a chain with a silver shield pendant and a black pen hanging from it. Her left hand is tucked in her pocket and she is wearing a gold and silver chain-link bracelet. her right hand is holding two sheets of white paper in front of her with no text visible to the viewer. She is standing in front of a wooden paneled wall, with the bottom part of a large projection screen visible behind her, where a blue background can be seen.

 Why I'm Afraid of Doctors

Doctors are supposed to save lives, that’s the oath they take.
Hospitals are supposed to be where anyone can know they’ll be safe,
Where you could be Barack Obama or Paris Hilton or Osama,
And it wouldn’t matter, because doctors are there to save your life and make sure you’re okay.

But let’s talk about what happened Easter Sunday, two thousand thirteen. 

Let’s talk about what happened to my friend, Amanda Baggs.

Amanda Baggs, published author, nationally known activist, pioneer of Autistic rights, Autistic culture, Autistic community

She went to the hospital

She had gastreoperesis, something I don’t quite understand, but I know because she told me, told the whole community, that all she needed was a feeding tube so she wouldn’t die

Standard procedure

No big deal

Then the doctor came to her room

Tried to tell her not to go through with it

Tried to tell her to consider the alternative

And you know what the alternative means?

When they say, consider the alternative, what they’re really saying is, your life really isn’t worth saving, so instead of waiting for the operation you should get around to starting dying

She almost died

The doctors, the ones who’re supposed to save Amanda’s life, almost murdered her

Because she’s autistic. Because she’s disabled. Because her life isn’t worth saving

And you know, it only became worth saving when hundreds of us who care called and called and called and told the hospital 

No You Cannot Do That

No You Cannot Murder Amanda Baggs

No You Cannot Kill People Just Because They’re Disabled

No You Are Wrong

So they did the operation and they did it without anesthesia

They said squeeze our hand if it hurts and she screamed

She fucking screamed

And they didn’t care

And they kept going

And they didn’t even have the decency to give her the right pain meds after

And her abled, typical roommate was fine

But Amanda wasn’t

"The fuck’s a retard like me matter anyway?"

And the sad thing, the funny thing, you know, is Amanda’s one of the lucky ones

Because people like her, people recognize those names
So they’ll call the hospital, tell those bastards where they can put it
For her

The rest of us, people like me, most of my friends

If it happens to us, who’ll ever know?

They’ll kill us with the machinery that’s been grinding on for years, specializing in ending disabled lives because we’re not human, we’re subhuman, we’re burdens foisted on societies and families undeserving of our pitiful existences.

They’ll murder us.

And who will listen?

The fuck retards like us matter anyway?


  1. I have gastroparesis, too, and am in and out of the hospital often for it. The thought of a tube with no anaesthesia is horrifying. You can hear rigid parts of your body breaking off to make room for the tube as they shove it down.

    The alternative? If you don't get proper treatment you can lose your stomach. Your entire stomach. They cut it out and connect your esophagus to your intestines. And once people get to that point, no, they usually don't have much longer to live.

    Three's a lot more I would like to say, but I'm too emotional right now.

  2. As a health care professional, I have seriously doubts about the truth of this story. There's no way Amanda had surgery without anesthesia. I do not dispute that receiving adequate pain relief post op is a big problem for many people, and unfortunately, it doesn't surprise me that Amanda received insufficient pain meds. Not because she has a disability, but because nurses are so run off their feet that getting to every patient and providing medication in a timely fashion is really hard. If the nurse had several other post op patients, he/she was probably run off their feet. It's not an excuse. I've been on both sides of the bed. I know it's not a perfect system. But I don't believe Amanda was singled out for having a disability. And there is NO way she had surgery without anesthesia.

    1. actually, you're very wrong. GJ tubes are usually placed endoscopically. as a healthcare professional, you should know that. most people are given propofol, which makes some people sleep--but some people are wide awake and merely disassociated with propofol. in the case of someone who cannot take propofol (which would have likely been amanda baggs' situation, due to the problems she was having with her lungs), they generally give some combination of versed or valium or ativan. with an endoscopically placed feeding tube--which i myself have had for 2 years now--they stick the scope into you and shine a light from inside your stomach so they can see from the outside where they are in your gut, and then they punch a hole in your abdominal wall and stitch your stomach to the inside of your abdominal wall. the entire process is very painful, and the recovery is almost worse. it was two weeks before i could sit up on my own and nearly three months before i could walk without an abdominal binder and being hunched over.

      as a health care professional, i shouldn't have needed to tell you all of this. and yes, i get that nurses are busy, but that doesn't make it okay to not take care of a patient who is screaming in agony. this isn't someone who was without pain meds for 20 minutes while the hospital staff took care of more emergent things. there is a serious misunderstanding in most of the medical community about feeding tubes. i am constantly told that "tube changes don't hurt" by people who have never had a tube. spoiler alert: they hurt. pretty badly. thankfully MY doctor actually thinks my life has worth, and wants me to feel better, not worse, so he orders anasthesia for my changes. most people aren't that lucky and have to go through the whole thing wide awake and in pain, with doctors and nurses insisting that they aren't in pain.

      as a health care professional, you should keep that in mind when commenting on a situation you clearly don't know anything about.

  3. Anonymous, they gave her anesthesia, but they did it improperly and told her she wouldn't remember (she did). They gave her nowhere near enough for what they were doing to her.

  4. It is standard procedure, and part of medical ethics, to provide information and alternatives for patients, receiving feeding tubes, regardless of disability as long as they are assessed as mentally competent to make the decision, which otherwise can be followed from living will documents.

    The hospital would have been at fault if they did not provide this option/alternative to the patient. It certainly is not a comfortable issue to face in life, but it is part of standard procedure in the hospital environment, as linked below.



    My understanding from what the patient stated as reported on the website is that General Anesthesia was requested, but it was refused; instead it was reported the drug Fentanyl was used, which is a very powerful amnesic drug used in anesthesia, and a standard used drug in this type of feeding tube procedure.


    Depending on the severity of other health conditions general anesthesia is not always a viable option, and the patient did mention something about stopping breathing, which is part of what can make general anesthesia not a viable alternative.

    It is terrifying to me to imagine the Fentanyl not working, and a person consciously aware of what is happening in the procedure but it has been reported as happening in other cases.

    Unfortunately, it may have been the only option to save the patients life, where there was no other option the hospital could take except for no procedure at all, which was not a decision that the patient reported they were interested in taking.

    Fentanyl, is also known to provide a side effect of hallucinations in some cases; it has a powerful psychological effect on some people that can be very disturbing for the person experiencing the side effect. Fentanyl is 100 times more powerful than morphine, as described in the Wiki article above.


    It is a horrible thing that the patient had to go through this, and it can be extremely painful to have this condition as described in the wiki link above on this GI disease.

    However, to this point by every report that has been provided there is nothing out of the ordinary in this medical case per medical malpractice or standard procedure, other than the unfortunate and historically reported response that the patient has reported with the sedative that was used for anesthesia.

    If there was a record of this side effect to the drug in the hospital records, it only lends more evidence that General Anesthesia was not a risk that could be afforded in this case to save the patient's life.

    It would not have been ethical or legal to use a procedure that would have likely killed the patient over one that would not be as likely to kill the patient.

    The law protects a person's right to refuse a procedure like this but does not provide a right to ask for a procedure that will more likely kill a person. That would effectively make the procedure euthanasia instead of treatment.

    2nd part of comment below:

  5. 2nd part of comment:

    The Hospital cannot release documents to present what is in the medical records to defend itself in response to the accusations, because of privacy issues.

    The bigger potential problem with this issue, is that some people on the spectrum already fear doctors for many reasons that have nothing to do with malpractice or intention of malpractice by Physicians or Hospitals.

    While it may be very uncomfortable to think about, unwarranted motivated fear of the medical establishment, physicians, and other health care professionals, could lead to someone avoiding seeking care when it is actually needed to save their life.

    There are some people who suggest that responsibility is shared by those who inspire unwarranted fear.

    One certainly cannot put that responsibility on the patient, who has reported being under treatment with a very powerful amnesic drug used in anesthesia, in recollection of what was perceived during and after the procedure, but the facts as they currently have been reported do not warrant a high level of inspired fear in others, potentially leading to avoiding healthcare when it may be needed the most.

    One can also not reasonably put a responsibility of inspiring unwarranted fear on what is reported here in the topic article because one is sharing an emotional story and admits to having no understanding of this illness, or no suggestion of understanding what is or is not appropriate medical procedures, medical ethics, or health care facility standard operating procedures as applicable in the report of this patient's personal experience that was made public to others on a website.

    There now is additional factors of evidence presented here that others who may read the concerns here, can now weigh in whether or not the potential fear inspired here is actually warranted in consideration of these additional factors linked and referenced.

    I too am afraid of Doctors, and afraid of drugs.

    That fear almost killed me.

  6. the comments in doubt of amanda's story show a profound lack of understanding of what disabled people who frequently, not in just this one instance but throughout our lives, are subject to inhumane practices by doctors. this is one instance but i could give you ten more from my own life, and more and more above that from the life of my partner. i don't need to hear someone drag out a fine-tooth comb and nitpick over the actual anesthesia dosage to know in my bones the way it feels to withdraw consent from a treatment and have the doctor do it anyway, or to be naked in front of multiple doctors at once and be treated like an animal rather than a human being, or to be subject again and again to such pain that i'm screaming and in tears and be told that i screamed too much and it wasn't that bad. i've been there, so many times. there are good doctors and there are policies and procedures and and and etc. etc. ad nauseam. but we have a medical culture that simply doesn't see disabled people as worthy of humane treatment, in large part because it doesn't see us as worthy of life.

  7. Um guys? The Internet is like a giant game of Telephone. I can't answer for every variant on this story that has sprung up. But I can say that:

    1. It happened.

    2. It was worse than anything I actually wrote about online. The more details you know, the worse it is.

    3. The disability discrimination involved wasn't subtle. Disability stuff was named, starting from their attempted refusal to admit me because I had a developmental disability (Patient Relations shut that one down fast once someone knew enough to call them) and they thought that meant I needed 24/7 supervision even though I'd never needed that in previous stays.

    I find it interesting exactly how convoluted people have gotten in order to make it plausible that this didn't happen. Fentanyl-induced hallucinations? Really?

    As it happens, I'm actually very prone to delirium when ill. Therefore, I always verify what happens in the hospital with other people who were there. If you don't trust me, you can ask Kathleen Seidel or Laura Tisoncik, both of whom were sitting directly outside the door to the Interventional Radiology room where the procedure took place. I was awake and screaming the entire time and they said they felt completely helpless to do anything.

    One or the other of them was there for most of the rest of this too. Including the attempts to talk me out of getting a tube. Which were not the standard informed consent procedure. In fact, these conversations contained precious little information of any kind, not even much in the way of misinformation. Just people in my room at least three times a day trying to talk me out of getting a feeding tube. (Which also shows they knew I needed one. If I didn't, they could've just denied me one and I wouldn't have gotten it no matter what I decided.) This only let up after the social media thing happened, and then it let up instantly.

    And it absolutely was about disability. And it absolutely was not about nurses being busy. I am neither stupid nor an infrequent patient at hospitals. I was treated vastly differently than my roommates who were in there for very similar procedures. By the same exact nurses who were coming into our room at the same exact times. My roommates got meticulously-adjusted pain meds for every twinge despite less pain than i was having.

    (The extreme pain turned out to be because the tube was put in wrong.)

    Also, I don't go LOOKING for crap to blame hospitals for. There's a lot that happened there that was nobody's fault. There was also a lot that happened there that was absolutely someone's fault. And as i said, due to being prone to delirium I triple-check stuff against what other people saw. And everything that happened has been verified by friends, developmental disability system workers, and people who worked at the hospital (doctors, nurses, etc.).

    And as I said, Kathleen Seidel and Laura Tisoncik were around in person or by speakerphone for the vast majority of these events, and can verify a lot of them, and probably remember some things clearer than I do.

    As for fearing the hospital... holy crap I've almost died because I'm afraid to go to hospitals. When saying you're afraid people will fear the hospital, did you ever stop to consider how I feel given that this isn't just something I heard, but something that happened to me? I'm scared shitless of that place but since I have a lot of medical problems I have to be there sometimes. This past year alone I've gotten myself very sick multiple times trying to avoid the place as long as I could. I wish I had the luxury of turning off my memory of this and pretending it didn't happen. But if anyone fears hospitals because of this, it's the fault of the people who did things wrong, not my fault for saying "Hey, this thing HAPPENED."


Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.