From an article in The Boston Globe, by S. I. Rosenbaum:
SOMERVILLE – Here is Bonnie Denis: pierced and tattooed and dreadlocked, balancing on a pair of custom-painted, raspberry-pink crutches.
Here is Bonnie Denis’s right foot: small and calloused and square, the arch bent outward, toes overlapping each other like windblown trees.
When she walks, it feels “like there are a bunch of knives stabbing me,” she said.
So about three years ago, after a host of surgeries and years using a wheelchair, Denis, 30, made a decision.
The foot was coming off. She would find a doctor to amputate it.
But it was not that simple.
Doctor after doctor turned her away. The foot was “healthy,” they said. The tissue was alive; blood circulated through it. Amputation was not absolutely necessary.
Stories like this make me feel very libertarian. It’s her body, dammit! This — doctors who don’t seem to believe that people with disabilities may have some idea of what’s best for their own bodies — seems to me a pretty common theme in writing by and about disabled folks.
There’s more at the Globe. Bonnie Denis did eventually find a doctor who is willing to help her, you’ll be glad to hear. I also liked the bit about zombie bones.
While that’s probably a lot to do with it, don’t forget that the US is an extremely litigious society; that alone, I think, would be enough to deter a doctor from amputating a foot which doesn’t need to come off. Add that to a perception of inability on the part of the disabled… *shrug*
Plus, if we’re talking libertarian, what about the doctor’s right not to participate…?
It’s a tricky issue. I remember hearing about a case where a surgeon was sued for amputating a healthy foot. The circumstances were very different: the patient was psychotic and was convinced that his perfectly normal foot was evil for some reason. A surgeon agreed on strict libertarian grounds, i.e. that if someone didn’t want his foot he shouldn’t be compelled to keep it. The patient was successfully treated for his psychosis and sued on the grounds that the surgeon shouldn’t have listened to him when he was not in his right mind. (I think the patient won the case, but I’m not sure that he was right…what if he couldn’t be treated successfully or was treated but later went off his meds and, again convinced that his foot was evil and that no one would help him, took a chainsaw to his own foot?)
As I said, entirely different circumstances: the lady in the article is perfectly sane and has well considered reasons for wanting rid of her foot. However, I think that past litigation, even if only distantly relevant does make surgeons more cautious about any elective permanent disfiguring surgeries.
On the other hand, I see amp’s point: It is her foot. Maybe there could be some happy medium between, “You want your foot taken off…ok, how’s Wednesday?” and “Don’t be silly–how could YOU know when an amputation is necessary?” What Denis needed (and apparently eventually found) is a surgeon who will talk to her and listen to her: hear her story, understand the reasons for her request, fully inform her on the risks and benefits of the requested surgery and offered alternatives, and worked with her to come up with the plan most likely to give her the maximum benefit at minimum risk. (It could still go wrong: the prosthesis may be even clumsier, she may have horrible phantom limb pain…but she may have no more pain and better balance in the end. As long as she knows what she’s getting into.)
It seems people like to infantilize those with disabliities.
I have to agree that this is probably litigation based. I’d rather get sued for refusing to amputate someone’s foot–a situation which can easily be corrected, by amputating it in the end–than get sued for incorrectly amputating someone’s foot, which is, obviously, irreversible.
That same thing surely applies to the medical viewpoint as well. It is scary for everyone to make large, completely irreversible, decisions. And when those decisions diverge so widely from the “usual” (most people want their feet) then it is unsurprising that it would be treated with caution.
I am not sure how much of this can be attributed to disability issues and how much of it is the reality that the solution of amputation is incredibly unusual and rare. The more unusual it is, the more people will react to it.
I’m all for anything that pushes you in the direction of libertarianism, Amp. But this doesn’t require libertarianism, just a consistent application of the bodily autonomy meme. If it’s your body, it’s your body. I can cut off my perfectly healthy foot on a whim if I feel like it, and my doctor (in her role as paid servant) should do exactly what I tell her to do, even if it kills or harms me.
Of course, the logical consequence of that line of reasoning is that I should be able to sell one or both of my kidneys or lungs if I want to, as well. Autonomy means autonomy; an autonomy without a property right is just the hierarchy letting me play let’s-pretend to keep me happy.
(And I could use the money. Anybody wanting a kidney and already in contact with a rogue autonomy/libertarian doctor, get in touch.)
It seems people like to infantilize those with disabliities.
Idunno, it seems like doctors like to infantilize everyone, not just the disabled. But that’s just my observation.
Sure litigation is a part of this but my guess is that the article’s reference to doctors considering amputation a “failure” is also a huge part of it. Doctors have all the human psychological hangups the rest of us might have and research has shown that they DO treat hopeless cases differently than cases they haven’t — for whatever reasons — deemed hopeless.
“I am not sure how much of this can be attributed to disability issues and how much of it is the reality that the solution of amputation is incredibly unusual and rare. ”
I don’t know that amputation is either unusual or rare. For people with Charcot foot/diabetes who wind up with infectious ulcers and such frequently enough – if you go to an orthopedic surgeon, you’re more than likely going to end up with a suggestion to lop the thing off (even though there might be other ways around it) because it’s basically standard practice in those situations.
I am going to speculate that Denis’ problem is that her particular situation was not something they could look to for a standard of care issue and that’s the reason – in addition to the litigation issue that she had a hard time finding a surgeon willing to do it. It IS severe and irreversable, but there is incredible bias in the medical profession that the status quo is preferable in spite of a lot of other factors (that often include pain and severe inconvenience to patients) simply because it is the status quo. So, a deformed and painful foot is preferable to no foot at all because feet are more valuable regardless of the pain and inconvenience might be caused.
I work in the field of medicine (though I am NOT a medical professional) and both as a frequent patient as well as a daily observer of medical communities, the ablist bias in medicine is undeniable. I don’t even think it’s conscious most of the time, but it’s always there.
I have fortunately found a number of specialists whom I have a great deal of respect for, and whose care I am delighted to have. But by and large my personal experience with doctors is that a lot of them are assholes to anyone they deem as unworthy of basic respect. And unfortunately, a surprising number of them automatically place people with disabilities into this category. Certainly not all, but I’ve dealt with a lot of doctors and I’d have to say more than 50% fall into the asshole category.
I remember a story from a few years back about a new test for a gene variant – the gene greatly raises the risk of breast cancer. Many of the women who had the gene opted to have a double mastectomy to mitigate the risk. I don’t remember any public discussion about refusing surgery to the women, in fact, I think that that was offered as a possible treatment even before the women took the test.
Of course, those were breasts, not feet. and it was in England I believe . . .
There was a thing floating around the net years ago about a man who had some sort of disability that was similarly described, and who had insurance that would cover the prosthetics but not the amputation (that being deemed ‘voluntary’). As a recall, since I can’t find it now, he was planning to self-amputate his feet using a homemade guillotine, and was raising money online for this project.
I wish I could find it again, I’m now curious as to how that mess turned out.
Like you’ve ever been anything but a libertarian.
Related to comment #10, a story in the news just ten days ago:
“Amputees fight caps in coverage for prosthetics”
Don’t let’s forget the intense prejudice against body modification. Why does the article need to tell us about her tattoos, piercings, and dreads? Obviously, because it makes her less “rational” and “normal” than some other disabled person who wants an amputation. Clearly, she’s a fucking FREAK who can’t be trusted! Look what she’s done to her body already! And believe me, as a tattooed freak myself, that’s exactly what a huge number of people think, and that’s why it’s in the article.
Deborah, if anything, the article’s bias is in favor of Denis’ perspective, and implies that Denis’ desire to have her foot amputated is reasonable and should be respected. The stuff you’re reading in to the article isn’t there, in my opinion.
(To be fair, I should mention that I know the author of this article. I can’t remember if she has tattoos or not, but it certainly wouldn’t surprise me if she did, and would surprise me a little if she didn’t have any.)
Actually I have to agree with Deborah, Amp. I was expecting this to be some bizarre body modification story because of that lead in, I think I was meant to see it that way. There are a few people out there who do want amputations for aesthetic reasons and I thought that this might be a story about one of them. I do remember reading about a woman who stuck her leg in dry ice to “kill” it because surgeons refused to remove it otherwise, and yes, she did cause gangrene so that it had to be removed.
Why so protective of tattoos?
It’s wrong for someone to think you’re a freak because you have a disability. It’s perfectly OK for someone to think you’re a freak because you have tattoos or body modification.
The former is an issue beyond your control. The latter is an issue you control: if I decide to get a swastika tattooed on my nose, I shouldn’t complain that people dislike it or think i’m odd.
I find it interesting how quick people are to immediately take personal offense and read into a subject when clearly the author was simply painting a picture. There are certainly people prejudice of tattoos, body mods, etc. but whether or not the author would have chosen to write about her appearance versus her colorful or drab character seems to me besides the point. I absolutely understand firsthand how the majority of doctors and physicians in general in my personal experiences view those of us with tattoos and piercings. In almost every visit to the hospital emergency I was asked if I do drugs as a result to my tattoos and when I told them no they tested me anyway only to find I am as clean as a whistle which just seemed to upset them. They immediately took offense to my ink and asked why someone as attractive as myself would do such a thing to her body!?! It was clear as day they didn’t believe me and for those of you like myself who do not do drugs it is extremely irritating when people looking after your care judge and refuse to believe in you. I can understand why some would question your character due to tattoos twenty years ago but in todays world it is awfully ignorant to do so. It’s the norm. Due to their own prejudices they often overlook serious matters at hand which could have been easily treated or prevented days or months before you almost die. I understand one looking out for your own care but blatantly ignoring you and all the facts due to appearance is sick. And of course it’s hard to present a smile and harness false faith in these physicians after they have failed you horribly time after time. I absolutely feel for Bonnie. Who are they to say you should have to live your life in miserable pain?
New technology and research over the years has clearly revealed many new disorders in which physicians previously discounted as psychological disorders when in fact there really were real physical issues. Who’s to say this woman is wrong? And if she is indeed having that extreme level of pain whether physical or psychological then of course she has the right to state her case and have the amputation if all else fails. I don’t believe it’s right to throw patients like this on medications to desensitize us from the real physical issue at hand. Sure there are those people out there with BIID ( Body Integrity Identity Disorder) but the fact that this woman has had surgery after surgery and still on crutches and in horrible pain seems to me that she has sincerely tried every alternative. Why would they have operated on her to begin with if there wasn’t a real problem?
And the fact that she custom painted her crutches doesn’t mean she’s obsessed with being disabled and a hungry attention whore rather one who takes pride in herself and wants to make the most of it by painting those awful sticks to her liking. She sounds quite creative and to think all of that creativity is masked by so much pain seems to be a real waste don’t you think? It’s terribly sad we live in a nation that is so selfish and sue happy, especially in our current economy. Maybe she is out for a quick buck but it seems highly unlikely she’d want to have live without her foot after so many surgeries. And hey, if it is BIID and she’s under that much distress then once again who are they to make her live like that. At least she could get a prosthetic and move on with her life. If she wants to live without a foot and release the doctor of liability then what the hell? We really need to be aware, be careful, and step up because we are literally losing all rights.
Hey, Amp, thanks for blogging my story! I’m delighted that folks are talking about it.
I chose to open the story with a description of Bonnie Denis’s appearance because I wanted to give readers a sense of her strength, creativity and individualism right away. It can be hard for a lot of people to see people with disabilities as real persons, with their own choices and quirks, rather than as metaphors for one thing or another. But Bonnie has purposefully taken control of the semiotics of her own body; by custom-painting her crutches pink, she has changed their meaning from a signifier of infirmity to an expression of her own vibrant personality. When you meet Bonnie, you can tell she’s a badass right away; I wanted readers to “meet” her in the same way in the story.
It’s perfectly OK for someone to think you’re a freak because you have tattoos or body modification.
The argument made was that having voluntary body modifications makes others think that you’re too “crazy” to be able to make your own medical decisions. That is very different from saying, “Your tattoo is ugly and tacky.” Further, bringing swastikas into the matter is just completely unnecessary. Don’t try to make a moral argument out of it when most tattoos and piercings (including pierced ears) in the Western world are purely aesthetic.
I have no quarrel with people who think I’m a whore because I have a dragon inked on my back; I simply don’t associate with them. However, if a medical professional hedges his judgment about my competency on it, that’s a different matter altogether.
@ Sailorman
“I am not sure how much of this can be attributed to disability issues and how much of it is the reality that the solution of amputation is incredibly unusual and rare. The more unusual it is, the more people will react to it.”
Given that she wants the amputation because of her disabilities, how is it not a disability issue?
I should say that I know Bonnie Denis, so my view is biased. But I don’t see how a series of doctors ignoring the experiences of a disabled person, in favor of what they think is better, isn’t about the ableism and disability issues. She is getting denied a medical treatment that would more than likely reduce the amount of pain she is in, and improve her mobility. Yes amputation is a dramatic proceedure, but it is something she has very clearly thought through and has a variety of clearly thought out reasons why this is a good idea for her. I feel comfortable saying almost no one blithely wants to amputate a limb. If you’re at that stage, you’ve already tried a lot of things and considered pros and cons.
She gets ignored because of the “doctor knows best” attitude and that drives me crazy.
In a perfect world, I would like her foot to be able to be fixed. In this real world, I would like her to not be in constant pain, and to have improved mobility. Finding out how often doctors ignore her clearly stated issues and needs, has really opened my eyes about how poorly people with disabilities are often treated by medical professionals.
@Deborah
I think the article leads with her alternative looks (dreads, piercings, pink crutches, etc) as a way for you to get a sense of her as an individual. While I do agree that voluntary bod mods like tats, piercings, etc. can cause medical professionals to not take you seriously, I do not believe that is why doctors are refusing to consider her amputation requests. I think it comes down to doctors infantalizing her because she is disabled. She is also physically small (she’s short) which, along with being female, I think adds to doctors not taking her seriously. Bonnie is *far* from child like, she’s an intelligent determined woman, but I think some people see “small disabled person” and ignore everything she says.
I think not mentioning how Bonnie chooses to present herself to the world, is erasing some of her identity and agency. Also, I got to say, her pink crutches are really awesome.
Sorry this is a bit rambly.
I’ m thinking about having an amputation also. I would like to know more about this ladies story. I’d like to know if she continued to have pain after the foot was cut off? The excuse my doctors try to scare me with is Phantom Pains. I’ve read up on this a lot. I guess with the phantom pains I would know it would all be in my head. If I continue to walk on my foot my pain will increase over time anyway building up pain for the enviable amputation just doesn’t seem logical for me.
I’d rather have the amputation and be able to walk with a fake foot knowing i am no longer ruining the bone in my ankle and increasing my pain any longer then continuing on the path of a long painful unfulfilled life. I want to travel and right now or ever there are no options for me to do so. All the surgeries I have been suggested are not guaranteed for anyone with my type of injury, Osteochondritis of talus dissecans the hole in my foot is so large its hard to find a cadaver cartilage that’s large enough to fit.
This sounds like people, who have foreign limb syndrome. I saw a show about them awhile back, and it’s so sad to hear about how utterly desperate they are to have the limb they feel is alien to them removed. I recall, they said it was their brain didn’t recognize the limb as being there, so it’s like saying your brain says your lower left leg isn’t there, but when you look down everytime you’re like “OMG what is that doing there?!” I guess.
This is a person who is experiencing pain from their limb, I mean this isn’t someone saying, please cut off a limb that’s providing me no problems at all like with people with foreign leg syndrome, although their mind says it’s a problem. If amputation is the quickest way to solve the problem, and the patient consents to it, then I don’t see where the stop button comes into play.
I’d have to agree with no.9, if they don’t value your body, it’s all you can do to persuade them not to remove your body parts at their own volition, such as in the case of fat people and major organs of their digestive systems.
I’d have to say that the suggestion that they would see this amputation as a failure feels most like the truth. They also tend to be sceptical about others pain-it’s presence or abscence.
The description of woman concerned came across as establishing her as someone who knows her own mind and capable of thinking outside the box.