Dealing with messed-up-ness of medical system as a healthcare provider?

Lately I have been thinking about, or feeling like I need to think more about, becoming a healthcare provider in such a messed up system. Messed up in a lot of ways, including the lack of access and profit-driven system in the U.S. (call your congresspeople about single-payer universal healthcare, expanded/improved medicare for all, now!!), but that's a whole other post. I'm thinking about more the ways in which medicine has such a history AND present of being rooted in systems of domination and oppression such as ableism, classism, homophobia, racism, sexism, and transphobia.

How do I bring into conversation the idea that medicine is inherently a project of domination (an idea I take from discussions I've had with friends - theoretical and personal, and people I've read and heard in activist and academic contexts) with:
-the left-wing but not queer or radical in the same way doctor-activists and nurse-activists that see "good medicine" as a force for change (with whom I sometimes vehemently disagree, but sometimes think have done really good, important work)
-the objectified and rude-ranging-to-abusive way I frequently see patients get treated by providers at the free clinic where I volunteer
-the idea that even if this field is inherently fucked up and untrustworthy, there are still many things people need to get from it (sometimes because it is expertise or a skill specific to medicine, sometimes because medicine and/or government has control and acts as a gatekeeper)
-my own privileged experiences of being a patient (on the object side of the patient/doctor equation, but in a very privileged class, and racial context and a not-visibly-marked body in terms of gender variance and disability)?

What do I need to do when I am a nurse practitioner to make sure I serve the needs of the patients and/or disrupt the messed up patterns and practices of healthcare? What do I need to do now when I am interpreting or facilitating classes at the clinic? To not EVER lose sight of treating people respectfully, like people, instead of like objects to be touched (with or without consent). Or like interesting ideas to be bounced around later with colleagues (a greater danger for me, as I have noticed myself doing this)?

I have decided to go to school to be a nurse practitioner instead of a doctor. I think not entering into the old-white-boys-club (which now some women and people of color can be a part of if they play their cards right and/or have enough class privilege) of medicine, will position me a little bit differently. And when it is problematic, I will not have to have 110% of my time and energy devoted to it, so I will have time to seek out other worlds/people and take care of myself enough to not become a total pompous stressed out asshole that thinks I'm more important than everyone else, especially patients. But it still is part of a messed up, disciplining field, and it would be ridiculous to think being a nurse would escape that. Also, I am going to the top of a very hierarchical nursing field (hierarchies with strong racial and class components), and in programs that skip a lot of the grunt work and go straight to the masters or doctoral level position. Programs that are in some ways designed to position us just like primary care doctors (and that is part of what appeals to me about them).

Some of this is the mind vomit that will be irritating to look back on (and maybe for others to read). But I needed a place to work on processing, and also to be held accountable or discuss ideas if anyone has any.

Further reading (an extremely incomplete list):
Mississippi appendectomy - forced sterilizations on women of color
Ashley X petition
FRIDA on Katie Thorpe's womb to be removed
Interview with Harriet Washington, author of Medical Apartheid
Medical Apartheid book
Bad Blood book (on Tuskegee Syphilis experiments)

Insurance coverage: advocating for CGMS in a system that leaves many people out

Today I received an email from JDRF about their campaign to get continuous glucose monitoring (CGMS) covered by insurance companies. I want my insurance to cover CGMS so that I could use it. I don't think they have any business denying people coverage to this device that is helpful to our health and probably lifesaving for people with hypoglycemia unawareness. But I also don't think health insurance companies or our health care system in general as any business denying anyone coverage. It pisssed me off that this is JDRFs focus when there are more pressing issues for many people.

I wrote back:

I want CGM covered, but MUCH MUCH more than that, I want a single payer health care system that covers everyone in this country.

Please fight for things that will help ALL diabetics and that are much more necessary than CGM. I test 10 times a day, and sometimes wish I had CGM (for example, tonight, I am up late because I worry that my blood sugar is dropping). The diabetics that come to the free clinic I volunteer at are all uninsured, and cannot afford test strips. If they come to the clinic, wait on the waiting list for the diabetes education class, and then attend all the classes, they receive enough strips to test once a day. Though they are type 2s, this includes many people on insulin. People taking insulin that can test their blood sugar once or less a day. As for yearly dilated exams (more often if retinopathy is already present)? The waiting time to see an opthalmologist is 22 months

The millions of diabetics that are uninsured or underinsured and can't even access the basic necessities of diabetes care deserve much more help and I think it's abominable that this is your priority.

Sincerely,
me

We need healthcare for EVERYONE that leaves nobody out. We need a universal single-payer system (expanded & improved Medicare for all) now.

Thinking back to the aftermath of Hurricane Katrina

Hurricane Gustav and the anniversary of the destruction and criminal neglect of the people in New Orleans after Hurricane Katrina had me thinking back. Katrina hit before I left home in Chicago to go back to school for the year, and the aftermath continued as I settled in on campus. One of my professors remarked that people "feel like the world is ending" with all of the recent events - Katrina, the tsunami in late 2004, even going back to September 11th.

I didn't share that sense of terror or a strong connection to events like the tsunami or September 11th (especially not September 11th, which did not seem any more tragic to me than the tens of thousands of people that die every year in the U.S. from lack of access to healthcare and other forms of violence the media is not interested in). Yes, sadness that so many were dying, frustration and disgust with the responses of people and structures that could have helped prevent tragedies of such scale or responded better, and dizziness from just trying to understand the sheer numbers of deaths, which my brain couldn't even compute. But not a sense of terror or grief that shook me to the core.

Katrina was different.

I was watching TV with my mom, and suddenly I found myself sobbing. The camera had just showed a young black woman crying and screaming that she was diabetic and she needed insulin and that she was going to die if they didn't get some insulin to her. It just got me - I reacted before I had even thought about it. It made me so upset and scared and incredulous and disgusted. It was just so wrong and so upsetting, and I did not understand how anyone or any structure could do that (deprive someone who is insulin dependent of their insulin) to another person.

Once I thought about it, I got enraged at everyone, the government especially but even all the way down to the news crew. If they had those resources (electricity and transportation and contacts and enough expensive equipment to get on national TV), how could they stand there fucking taping her screaming for her insulin and not get her some? This was not the first day after the hurricane hit either, I think it was at least day 3.

But what got me on such an immediate, visceral level was clearly the type 1 diabetes. And probably some element of seeing myself in that woman. Although I know on a rational level that my chances of being in that situation, as a wealthy white person with connections (in healthcare), are almost non-existant, it struck me. Maybe poked past some of the filters that structural racism has taught me to look through and the mainstream media perpetuates? Or perhaps I shouldn't have been surprised, I don't usually watch a lot of TV and so don't see all of the gruesome visuals on some disasters.

It also seemed much more urgent and close and part of my life because it was closer and happening in my country, a system that I am more directly part of. It was crude injustice: racism, classism and poverty laid out in such a raw, visible way. Ignoring or moving at a snail's pace to help people that are dying, in a way that just showed how little regard most of the people in power had for their lives. That stuff exists here all the time, but it was magnified and made more visible by the hurricane.

Newsflash!

Did you know that breastfeeding could abolish all diabetes? No, you didn't? That's because it can't!!

Last week, a nurse (possibly a nurse practitioner) said at a health care activism meeting, well, if everyone breastfed, there would be no diabetes.

Um... I say, I am diabetic and I was definitely breastfed for a long time.

Instead of owning up to the stupidity and insensitivity of her comment, or at least backing off a little, this woman says, "Really?!! Wow, you must be the outlier, the one exception! It's an inflammatory process!"

Hell no. This woman did not only just talk about me and my mother, but then she tried to defend her statement and act all surprised.

I thought about not even telling my mom (a nurse practitioner) about it because even though we both know it's bullshit, I don't want her to even think for a second about blaming herself or that I might blame her. But, I decided to, and she articulated another thing about it that bothered me. She said, "Doesn't sound like politics to me, sounds like blaming the victim." Yes, the blaming the victim thing. Stupid and fucked up. But I think it was politics, or "blaming the victim" masquerading as a political statement/rebellion, which bothers me even more. And blaming mothers is a recurring theme in our culture.
EDIT: As I was writing this post, I found this great discussion going over on Scott's blog about diabetes, breastfeeding, and blame/guilt.

I am actually all about breastfeeding for mothers that are able to, but this comment was just ridiculous for a couple reasons. Even though I do think traditional medicine can be harmful sometimes and natural methods have a lot to offer, the "natural medicine" pusher people piss me off a lot because they take it to an extreme that is able-ist and/or just dumb. Also, not all mothers are able to breastfeed for various health and other reasons.

In general, people that think they have a cure-all "natural" solution for my diabetes, or whatever else, are pretty arrogant to think that they have the fix to something that I devote endless time and energy to on a daily basis. If it was that simple and complete a solution, don't you think I would have found it? Or am I just stupid for muddling through with my traditional medicine? Do you want to see what happens to my body for even 4 hours without any insulin?

Now, that nurse wasn't suggesting she had a cure for me now. This is just an example of where that kind of statment takes you. It's a way of invalidating my very real experience. That's the problem with universalizing especially when you havent had that experience (and especially when you're working out of this ableist framework).

Also, even if it really was true that breastfeeding can prevent all diabetes, that's a pretty serious, loaded thing to say in such a cavalier way to someone you met 15 minutes ago.

I need to learn to write shorter posts. If you're getting bored, you can consider yourself done here! More ramblings of mine follow...


There are studies that show breastfeeding does significantly reduce the chances of a kid developing type 1 diabetes. And inadequate nutrition as a fetus, infant, or child can be linked to higher risks for stuff like type 2 diabetes and other health issues as an adult (one reason why I think we need to look at environmental stresses like poverty, etc. before anyone chalks up racial health disparities to genetics, which can often end up being just a new sophisticated incarnation of scientific racism). But for her to talk about this one single cause is really inaccurate. And her justification that it's an "inflammatory process" doesn't help her case, because there are so many different triggers that contribute to inflammation.

Also - speaking of ableism - this nurse also made a bunch of comments about well, if something ever happens to me, that's it. pull the plug. She was trying to make a point about the excess money we spend in the U.S. on heroic measures like ventilators at the end of life. I actually agreed with some of what she was saying, that we need to reexamine what life is and how we're spending our healthcare dollars, and if we really want, from a financial and quality of life standpoint, to be living hooked up to tons of stuff instead of letting ourselves die peacefully when life is ending. But I don't think needing outside assistance from other people, machines, or drugs are the definition of when life is worth living or not, and her statements went too far into ableism and almost even eugenics.

Do you really think life with illness isn't worth living? And do you want to say that to me and the woman sitting next to me that looks like she might have cancer? Besides being a messed up way of thinking, MOST people live with illness or disability in some form at some point (especially people that are not upper-class white people like she and I). And I think to not recognize that is both inaccurate and ableist in that it reinforces this idea that healthy and perfect (and requiring no outside help from other people/medicines/therapies/etc) is the "normal" state for everyone, and a fall from that is remarkable or abnormal.

fuck you, bush

Bush vetoed the embryonic stem cell funding bill for the second time.

I'm not that into exclusively cure-focused diabetes research as much stem cell research is. And I also am not so into the recent stem cell research findings that came out a few months ago in which they were able to reverse early stages of Type 1 with intensive chemo to kill the immune system and then a stem cell transplant (more on these things soon, I have posts on them that I just haven't finished). However, I think this research should happen, and especially for issues besides diabetes that are less treatable. But mostly, the justification he has just really bothers me.

This 'destroying human life' bullshit that he says pisses me off. It's like, what about my life? You're choosing balls of cells over me? If you want to talk about ethics, let's bring this into focus. I am here, a person, living right now, as are millions of other diabetics and people with other conditions that could benefit from stem cell research. If you care about preserving human life at any ridiculous cost, why not work on those cases that are already a real live life? Instead of those potential little things sitting in freezers not going anywhere. What, it's not worth 'saving' damaged goods like us?
EDIT: As 'Artificially Sweetened' reminded me, the bullshit here is especially obvious when you remember he didn't give a shit about the value of each and every human life, of US troops or Iraqi civilians, when we went to Iraq and bombed everything.

By the way, these vetoes were 2 out of only 3 that Bush has done his whole time in office. Boy, he must really love those frozen balls of cells that are just sitting in freezers (I'm probably going to get on the anti-abortion anti-embryonic stem cell research hit list for saying that, oops) , good thing he's SAVING all of them. He's saving their little lives. What a savior, don't you just love him?

discomfort with anger, civility, and diabetes

I have been meaning to write something about diabetes and class. And then I was going to write something just about diabetes and things I've been thinking about my experiences since I've had to life more within them (and more constantly) lately with the problems I've been having. But then I got lazy. And then I got into an argument with my dad, so this is what I wrote instead. There's a lot of other things I want to bring out eventually, but too tired now.
PS I don't hate my dad, and this isn't meant to be a personal attack. I'm just frustrated and it illustrates really well what I think happens in a lot of situations.

my dad is so into civility and doesn't like anger. so frustrating to communicate with. since he can't deal with anger, frustration, or conflict, he can only discuss things on his terms or not at all. I asked him (i worked so so hard to be nice and "rational" and articulate cuz i knew this would be an issue) to stop 2nd-guessing me when I say i know what the problem is and my pump isn't working after another incidence of him continuing to second and third-guess me even after i spend a lot of time/energy laying everything out. and i said my anger was healthy and necessary and part of life.

now he says he won't discuss my diabetes with me anymore if that's what i want. it's not, i just want to discuss it without being constantly 2nd guessed. or if i "all i want do to is express my anger" (cuz clearly that's incompatible with conversation or intelligent exchange, of course). i was trying to stay understanding and communicate well with him, but it didn't work. he legitimately has some emotional issues with avoiding conflict i think, but still not fair and a cop-out. he got just what he wanted - this conversation about my diabetes doesn't occur unless it is on his terms, unchallenged. and it's so about upholding a fucked up civility - keeping me from getting angry or us from getting in a conflict under the guise of trying to avoid somethign that upsets me (which is there no matter what, by the way, and it's his reaction, not my diabetes itself that i was upset about in that moment), rather than actually addressing my concerns and engaging with me.