In my first year of college I took a fair number of psychology classes. I didn’t know exactly what I wanted to be when I grew up, but I knew I wanted to avoid all of the math and science I could in the process of figuring it out. So psychology (of the non BSc variety) seemed like a great fit.
It was in one of those early classes that an instructor told me about Even the Rat Was White: A Historical View of Psychology, which spoke specifically to the ways in which medical research has been used to create and reinforce racial stereotypes about Black folks. While this book doesn’t provide the final word on how racism shapes the healthcare experiences of people of colour and Indigenous people, it provided me with a window into a world that can be racist as shit, and more terrifying than I could have ever imagined.
From there I started to look at the ways in which Black people experience medicine in the West, and how people of colour (as well as other marginalized groups) have been largely excluded from drug testing. Medications that have been released to treat or manage any number of medical conditions were not formed or refined with our own wellness in mind, or even with an understanding of how those medicines could impact our bodies.
I came to know the story of Henrietta Lacks, who had parts of her body harvested without her permission, without her acknowledgement, and without any remuneration. Her cells are used, to this day, for medical research. The racism inherent in the initial theft of parts of her physical self has been continued in the way her story has been told. This ongoing injustice made my heart heavy.
There are also numerous accounts of the horrors of medical testing conducted upon Indigenous and racialized bodies, from the torture committed against children in residential schools, to the Tuskegee syphilis tests, where Black men were misled into believing that that they were receiving treatment, while in fact their slow deterioration and deaths from a curable disease was studied over the course of decades.
And don’t forget segregation! In Canada, we had an entirely segregated hospital system for Indigenous people, where terrible things routinely happened to patients, up until the 1970s. In the United States, segregated hospitals were also par for the course until the 1960s. Both Canada and the US continue to provide specific health services to Indigenous people that are often criticized for unequal funding, access, and service delivery. Access to healthcare is further segregated by issues including poverty and physical distance from healthcare facilities.
As people experiencing marginalization, we all know personal stories from loved ones who may have been turned away from health services, who may have been treated terribly by medical professionals, and who often have not received a baseline of treatment for the medical care that they are entitled to as human beings. We likely have our own stories too. And we certainly know how these outcomes continue to worsen when considering other intersectional factors.
People of colour often must choose between accessing a system of healthcare that may take more from us than it gives us in return, or else not accessing health services at all.
So. While it did not come as a surprise to me that Anthony Stokes, a Black child with a life-threatening heart condition, would be told to go home and die quietly, because of his history of “non-compliance,” despite the availability of a life-saving organ transplant, it did make me sad, and incensed, and outraged. I also started to learn about the particular difficulties that people of colour face in accessing organ transplantation in the United States. Seriously. What the fuck?
I don’t think a system that already criminalizes Black bodies at disproportionately high rates in every aspect of our lives has the right to use that criminalization to devalue the life of a child in need of an organ transplant. To imply that a kid can’t learn to do the things he needs to do to maintain the heart that would give him time with his family, and his friends, and his aspirations, and his own damn life, just because he had been in some kind of “trouble” (whatever that means anyways), is just. No.
I have thought of that precious child and his precious life every day since I first read about him. I have cried about him, I have dreamed about him. I want him to have every opportunity to grow up and live the life that he dreams of for himself. Like I want for every child, everywhere.
But this was not guaranteed for Anthony Stokes. He was told his life was not one worth betting on, and that was that. It took community mobilization, social media activism, and the power of prominent Black voices before the hospital board reversed their decision, mustered a vague apology, put him on the top of the transplant list, and finally performed a successful transplant.
My heart sings for Anthony Stokes and his new heart, and for all of the things that he will go on to experience and accomplish in his life.
But. You know and I know that Anthony Stokes is not the only person whose value has been discounted, their opportunity for survival dismissed, by racism and racist institutions. We know this has happened before, and we know that this will happen again.
So, as the song says, (link included for a mid-read pick-me-up, just in case you need it), “Where do we go from here?”
I have some thoughts.
DISCLAIMER: I can’t answer all of the questions about how to fix healthcare so that racism doesn’t literally kill people of colour and Indigenous people accessing medical care. Because 1. Your healthcare system is confusing, America, and Canada’s is too; and, 2. This issue is not just about healthcare, it is about the prevalence of racism in every facet of our daily lives.
But I do have a few things on my “make healthcare less racist” wishlist:
One is more candid conversations about issues of intersectionality, oppression, and healthcare access. All kinds of marginalized folks have negative healthcare outcomes because of discrimination. As Lilla Watson says, “If you have come here to help me, you are wasting our time. But if you have come because your liberation is bound up with mine, then let us work together.” So, let’s do more of that. Yeah?
Another idea is universal healthcare. Because, WHETHER OR NOT A PERSON CAN AFFORD MEDICAL CARE SHOULD NEVER BE A DECIDING FACTOR IN LIFE-SAVING MEDICAL TREATMENTS.
Also, I sure would love to see a dedicated, publicly funded effort to get youth of colour and Indigenous youth into medical programs, and into medical positions, and into the highest positions within medical institutions. Like, into the spaces and positions where decisions get made.
I would like to have serious conversations with all healthcare practitioners. I would like to see radical re-education about equity and social justice as an inherent part of medical practice. To undo injustice we need to speak up about it, to learn to identify it, and to institutionally embrace ending it at every level.
This list is certainly not exhaustive. It is likely not even the beginning of the beginning of what we need in order to see a healthcare system that treats us more like human beings, and less like disposable test subjects.
I don’t know exactly where the answer lies. I do however, know what this answer looks like. It looks like a world where Anthony Stokes is able to get the same medical treatment as any other 15-year-old who needs it. And it looks like every other person, whoever they are, getting an equal chance at surviving the healthcare system, too.
[Image via Wikimedia Commons]
Tags: anthony stokes, healthcare, henrietta lacks, jessie-lane metz, medicine, the criminalization of black bodies, the tuskegee experiments
WORD to universal healthcare, I cannot understand how people could not view basic healthcare as a human right (not to mention the right to not be scared of becoming bankrupt/homeless if you break your leg or some shit).
BECAUSE EVIL SOCIALISM or something.
I love how “noncompliance” means things like taking medicine or showing up for follow-up appointments, both of which are unaffordable for a lot of people. Which means people die simply because they were born in a country where health care is not a right but a privilege, and it also ridiculously expensive.
I cannot- absolutely cannot- second this enough. I’ve harped on about how universal healthcare is going to change my life for the better before. Here’s a different story: friend of my boss- young guy, actor, working as a waiter, no insurance- is hit by a car while cycling and sustains severe head trauma. They removed a piece of his skull to allow his brain to swell without causing damage. They’re supposed to replace it once the swelling recedes. Well, once that time comes, the hospital refuses to put the piece of his skull back in until he can come up with a way to pay for surgery. How do we live in a country where this is OK?!
PLUS, for-profit health insurance just does not make sense economically. You have a whole system structured around what is essentially a gamble for the insurance companies–they’re betting you won’t get sick long enough for them to make money, but they’re not incentivized to work for public health because they’re so protected from actually having to pay up when they lose their bets. It’s a completely irrational system. There is no good reason for health to have a profit motive.
And there’s more of an incentive to treat diseases than to cure them – if nobody has cancer, nobody’s paying for chemo etc.
exactly! Immoral AND irrational, my favorite.
YES! It blows my friends minds how much I support universal healthcare, but after living with it and paying the taxes for it and seeing what it can do (my friend’s kid needed 3 surgeries for the same condition last summer and she had access to good family leave and they didnt’ have to pay for anything except the medicine they took home. Another friend has 2 kids with CF and not only did they get free medical care, they met with a case worker and got extra funding for transportation each month so they could get to the hospital, extra funding for GF foods since one child also has Celiac disease, extra money for laundry since they have to do it more often, and free medication. I cried when I found out everything they were able to get help with) I want all the universal healthcare forever. Sure, some things aren’t as great as they are when you’re paying $$$$$, but I freaking loved that my taxes went to help people that needed it.
Oh man, I never know what to do after reading these pieces by Jessie-Lane Metz. I feel so sad and frustrated. I don’t want the world to be this way and I know that it IS THIS WAY. Thank you, Jessie-Lane Metz!
Seriously. Things are so wrong, and more and more it seems like the only way to fix it is LOTS OF MONEY, but the vast majority of the “people” who have that much money are corporations that only care about money.
And to think—we used to be the “land of opportunity.”
JUST AN ASIDE: Canada spends significantly less per capita on health care than the United States. Money is only part of the problem.
this makes complete sense to me, because if you’re not afraid to go to the doctor when you’re a little bit sick you won’t get worse. I’m not familiar with the problems with Canada’s system though.
I agree that money is not the whole problem, and maybe is part of the problem(s) in ways that we might not expect. Throwing money at the healthcare industry is probably not going to change capitalist systems of oppression.
But this discussion reminds me of this other incredible thing I read this morning:
http://tressiemc.com/2013/08/27/when-your-brown-b…
There was a great article in the Times recently that took a look at the craziness of healthcare costs in the US through the lens of how much it costs for a bag of sterile saline (salt water). $546?! http://www.nytimes.com/2013/08/27/health/explorin…
We never completely were the land of opportunity. *cue sad trombone*
aaaand my white privilege rears its ugly head. You’re right, that’s very true. Even so, there’s less opportunity than there used to be. Unless you’re rich.
I think it is highly dependent on which time scale you’re using, you know? Between now and the early 1990s, sure. Prior to 1968 though, significant swaths of the country were de jure second class citizens or, if they happen to be white and female (or white and LGBT) they face significant hurdles to any sort of economic and professional freedom. So there’s that.
Actually, on the whole, I’m still pretty okay with living in this time frame than in any other time frame, even one previous generation. I was born in the early 80s but my sister was born in the early 70s and she was getting weird shit about how our parents have two different last names so.. yeah. Put me down for being okay with now.
[optimism, yay?]
Yeah, I’m about your sister’s age, and there’s definitely a difference even from decade to decade. There have been a lot of positive social changes, and there continue to be. I’m just so upset by how money seems to be the boss of things these days. Depression makes one pessimistic. That said, I do agree with you that now is the best time to live.
My boyfriend asked me this weekend, if I had a time machine and could go back to any time and stay there, what time would I pick? I couldn’t think of a time I’d rather go to. I told him I want to stay here with modern medicine and greater social equality. He chose the industrial revolution because of all the scientific developments being made, but I said no way! The air was so dirty back then, anesthesia was poor, and I wouldn’t have the rights I do now. Visiting other times would be interesting but I’ll stay here, thanks.
Yeah, I was trying to think about the money thing as well. Housing and education was just so much cheaper 10-20 years ago then now (even relative to real dollars, I think), and I figured those were the sorts of things you were thinking about. My only solace is that then you’re still reinforcing inequitable systems (so, not really one then), but as I get older, I don’t see how you can avoid doing that, particularly with regards to education.
I think you’re right about housing and education. In my original statement I was really talking about the fact that money has more power / is more important than people these days.
I hear you about reinforcing inequitable systems. We live within these systems so it’s pretty hard to avoid. There are ways you can do it (for example, couples who refuse to get married until everyone is able to get married), but that has far less of an impact on your life than something like a college education. When it’s within your reach, it’s hard to say no to it.
Thank you so much for writing about this. I’ve been thinking about Anthony Stokes ever since I heard about his story. I’m an organ recipient who works in the healthcare industry, and to give the devil his due, I understand how deciding who is worthy of a limited supply of valuable resources is never an easy decision, and yes, noncompliance does play a role in the failure of organ transplants. BUT- and this is a HUGE but- condemning a 12 year old child to death over noncompliance, particularly when it’s so clearly motivated by police interaction and, therefore, race, is so fucking skeevy and horrifying that I can barely express it. And as mentioned above, compliance is highly motivated by resources. Guess what makes you noncompliant? Among other things, not having the resources to obtain your hideously expensive transplant meds. Jesus. I can only hope this case brings these issues to the forefront. I was stupidly, ridiculously lucky that I had the socioeconomic and racial advantages to get and maintain my transplant. Best of luck, Anthony.
Yeah, being a kid usually would put you up higher on the list right?
As someone about to start a health policy career, thank you for this. This issue is SO SO important, but so much work on disparities doesn’t seem to want to tackle the fact that racism plays a role in it – it’s often treated as a historical artifact from an earlier, less civilized time, when in fact these disparities are recreated and reinforced every day.
Ah, thank you for going into the field! Weirdly enough, from my perspective (I work on environment and community development issues) I think the public health and health policy sectors are actually ahead of the curve compared to the sectors I work in, but I think that’s come out of necessity. There’s some issues around language access for patients with Limited English Proficiency that are really, really troublesome as well. I first learned about a lot of this doing Asian American/Pacific Islander advocacy work, and the APIA Health Forum does a good job outlining issues important to AAPI communities. I’m not as familiar with issues related to other communities of color.
You’re right, health policy is ahead of a lot of places, and I frankly just find that depressing. I mean, if this is as good as it gets, we’re not doing so well 🙂 I guess I just wish that a lot of the big name players would be more open about racism as an ongoing issue in health, rather than something historical we have to deal with. And I’ll definitely look into the APIA Health Forum – thanks for the tip. The YWCA also works in this area.
“if this is as good as it gets, we’re not doing so well :)”
YES! Oh god, I see that all the time, even on a microscale.. “If everyone is looking to X as the leader in justice and inclusion, but X isn’t doing so well, then…?!?!?!” It’s enough to drive me insane sometimes, and then I read more Melis-inspired comics.
When you say “Pacific Islanders,” would you happen to be referring to Marshallese people? They were the first group I thought of while I was reading this.
(I got to work with a bunch of them in a diabetes education class during my last year of school and it almost completely changed how I view them, for the better. And it was really fun!)
Sure, although they probably don’t get as much attention as needed. I’m honestly not very familiar with them. I think broadly speaking it tends to be associated with anyone with Polynesian roots (as well as Micronesian and Melanesian roots), so yes. I think in terms of populations equity a lot of the focus I saw was on Samoans, Tongans, Native Hawaiians, and Chamorros.
Thanks for pointing out that the HeLa story is actually kind of problematic. Informed consent in the ’50s was generally terrible – those sorts of things happened all of the time, and it’s completely random that the first cell line that can propagate itself came from that particular woman. I mean, I can see the value in using it as an example of the racism inherent in American medical practice, but it has always made me uncomfortable that we’ve turned it into this “poor black woman and her dumb uneducated family, haha they don’t understand biology, but also look at these jerky evil scientists” narrative to provide an entrée into a more universal medical ethics question.
Maybe instead we should have men’s rights activists weeping into their fedoras because BJ fibroblasts came from a removed foreskin.
Could you tell me a little bit more about how you feel the Henrietta Lacks story has been perceived? My husband is reading it now and gives me incensed reactions to each new part he reads during his morning commute.
We live in Baltimore and Hopkins has a conflicted legacy/relationship here, so part of me is actually pretty sympathetic to the “jerky evil researchers” narrative, particularly between Hopkins and the black communities of Baltimore city. As far as I know (I’m reading it off our kindle next) the issue is that they never asked for her consent, and while they weren’t obligated to according to the professional ethics of their time (regardless of race), it’s still an incredibly shitty thing to go around and steal parts of people’s bodies without their consent.
EDIT: I also realize that you may hate the first part of that narrative, e.g. the “poor black woman and her dumb uneducated family, they don’t understand biology” bit, and if that is what is circulating around… I have no words.
As a (white) scientist I am trying to parse how much of my reaction is defensiveness and how much is a legitimate complaint. I think overall I feel like the story got soap-opera-ified, as if the scientists were all “how marvelous! she has little education and less agency let’s steal shit” whereas it was probably more like “omigod omigod the cells are growing this is so great we are not thinking about how shitty this is because it’s not even in the medical consciousness yet because the 1950’s are terrible.” And since then we have come around to the idea that shit like that is reprehensible and’ve started to put systems in place to make sure it stops happening. And obviously I am not excusing it, nor claiming that there is not still a ton of systemic racism in the medical field, I just feel like every Story needs a Villain so the scientists were cast as such in this one.
Up until very recently, we didn’t understand enough about the cell biology to create immortalized cell lines from normal human tissue, and so had to use ones that arose spontaneously. Every day I use cells from tumor biopsies, aborted fetuses, etc., of varying levels of ethical and certain provenance, and maybe the best we can do is to say “sorry, that was fucked, and we are going to do better.”
On the other side of the coin, it seemed like a lot of the reporting was collecting “funny” anecdotes of the devastating misunderstandings her family has about the cell line, and using them for shock or entertainment value, which makes me angry.
Did the coverage ever get into the relationship between Hopkins and the surrounding black communities? I can definitely see why it may seem soap opera-ish, but the coverage I’ve seen makes a lot of sense to me vis a vis the overall social/racial context. (The 1950s were also a shitty time for ethics, no doubt.)
I’m just wondering if you’re familiar with the archetypal (for lack of a better word) story of Night Doctors. I never heard of them by that name, but I did spend a summer doing community organizing in the early 2000s in Bmore and it’ not uncommon to hear older black residents talk about doctors from Hopkins riding around, stealing black people off the streets. It wasn’t until recently reading the wiki page on Henrietta Lacks that I realized that what I had heard a decade ago is actually part of larger regional folklore. o_O
Basically, I guess scientists could easily be very scary then.. and to be fair to Hopkins, they seemed to be very good about owning the fucked-upness of the situation when the book came out. Still.. I can imagine it can be disconcerting to see your field a little vilified.. but I think there was a lot going on during that specific time period to justify it, e.g. the story of the Tuskeegee Syphilis Study. 🙁
The issues with the HeLa cells are multi-part. I didn’t take away that her doctor in 1950 did something particularly egregious- he’d have taken tissue the same non-consenting way from a white patient with aggressive tumors too. But what happened afterwards was horrible and racist. Her anonymity was not preserved, which meant her descendants were studied by scientists because they could easily find them. The later researchers took blood tests from her family to find out more about them and didn’t clearly explain what they were for- her family thought they were being tested for the same terrifying cancer she had, not that their blood was going to be used for more research into HeLa. They were scared, and when told of the sheer volume of cells that existed in the world they misunderstood and had images of her body existing many times over in storage for experiments. Those stories weren’t told to be funny or shocking, they’re told to explain the trauma this family faced.
In so doing the book raised a lot of questions about the right to cells. About patenting people’s illness, and the ability of people to consent in a fair manner. Scientists need to do more work on this issue. If you sign something complex and legal when you need life saving surgery that agrees that your cells can be taken from you, patented and sold, and you have no right to them, and later on, maybe what happened with the breast cancer gene can happen to you- some company is seeing massive profits from your cancer while your descendants can’t afford to get treated or tested when they might have that same cancer.
I think the author made a clear point that we are not getting better fast enough, that the abuses that happened to the Lacks family had been ongoing and that they deserved an apology at the least for the way they were treated well after the medical ethics had evolved to suggest different protocols. And that what happened to Henrietta was not some dim memory of the past, and could and did happen in a similar way right now to people. That we need to be clear to people about what happens to their tissues and maybe offer more choices.
Wow, this was a really helpful perspective on this story. Thanks for this!
I sure would love to see a dedicated, publicly funded effort to get youth of colour and Indigenous youth into medical programs, and into medical positions, and into the highest positions within medical institutions. Like, into the spaces and positions where decisions get made.
I would also like to quietly toot my alma mater’s horn for creating the Meyerhoff Scholarship to diversify the STEM fields in general, and I know there’s always been an emphasis in that program on diversify the MD pool. I think the program has the highest rates of admissions to MD/phD programs, for instance. It’s the brainchild of our school president, Dr. Freeman Hrabowski, who has spoken a lot about diversifying the STEM fields.
P.S. I’m not saying this to say that it’s the end all be all, since clearly these efforts aren’t taking place on an industry-wide level.. but I just wanted to say that some people are moving towards this.
Wait wait, I thought that calling someone an Indigenous person just sounded… incorrect? somehow? Can someone clear this up for me?
I don’t know about elsewhere in the world, but Jessie sounds Canadian and here Indigenous is generally accepted terminology, in my understanding. Mostly, I think, because there’s no other good word that includes all members of our Indigenous communities. “Indian” is generally considered offensive here outside of referring to persons covered by the Indian Act (which excludes many Indigenous people, and includes some white people). First Nations is sometimes, used, but technically (according to the sociology department at my job) it should be “First Nations, Treaty Nations, the Nisga’a Nation, the Inuit, and the Metis” which is a bit of a mouthful for regular conversation.
Thanks! My AP Style guide from journalism school doesn’t really cover Canada and I don’t think I realized that there were indigenous peoples in the Americas that weren’t covered by “Indian”… I suppose “Native American” has U.S. connotations and, while technically correct, wouldn’t really work from a colloquial perspective.
In the US, as I understand it, Native American is generally your best choice; some people are reclaiming Indian, but I believe there’s still some controversy about that. I don’t think (again, as far as I know) that Indigenous is offensive, but I also don’t think it gets used much.
I am not Indigenous (or other words I will discuss here) but I do, in my professional life, work with a large number of people who are writing about Indigenous issues, a large percentage of whom are themselves Indigenous. Because I work with writers, I have had a lot (A LOT) of conversations about what words are appropriate. (Basically I just talk about words all day, actually.) For reference, I’m in the US. I have limited knowledge about Canada.
I have not heard anyone object to the term “indigenous.” It’s a very broad term, with all that implies — it highlights commonalities of experiences of colonized peoples and erases particular, specific experiences. It’s a useful category of analysis, but only on the large scale. As one of my frequent correspondents notes, “everyone is indigenous to somewhere.” My sense is that it’s okay to use, but if you can use a more specific term, you should.
I was taught growing up that the term “Indian” was rude and disrespectful, so I did not use it — but many (most?) of the people I interact with prefer this term and use it to describe themselves. So, I follow their lead. (I definitely have moments where I expect my mother to scold me for being rude, though.) If greater precision is required, i.e., you’re speaking of something in a global context and your audience might think you’re talking about the subcontinent, you can use “American Indian.”
Most of the people I work with don’t like the term “Native American” and don’t use it often, although they might use it in an official capacity. I don’t think that you’re likely to get side-eyed for using this term, and it is probably the term that’s least likely to offend on this list.
I have seen “Native” used as an adjective (“Native youth,” “Native designers,” etc) but never or almost never as a noun. I think it has some negative connotations in Canada but I am not sure.
Again, writing from the US here, when speaking about Canada I usually use the words First Nations. (I admit, I really like the poetic nature of this term. I wish we had something so elegant here in the US.) However, as @milesofmountain notes below, that excludes the Metis, Inuit, and others. There are also some Nations that are separated by the US/Canada Border — are they Indian on one side and First Nations on the other? I don’t have the answer for that.
In general, I think it is polite to use the most specific term that works. If you know that Fred is Nuu-Chah-Nulth, don’t just be like “my friend Fred is an Indian.” That said, if you are talking about postcolonial literature, a broader term may be appropriate.
I cannot recommend http://www.nativeappropriations.com highly enough for commentary on issues of Indigenous representation. For general news and commentary from Indian Country, there’s http://indiancountrytodaymedianetwork.com/. And, interestingly enough, Al-Jazeera tends to cover Indian issues perhaps more than you would expect from a news source that’s based overseas. I found this discussion of The Lone Ranger to be really interesting: http://stream.aljazeera.com/story/201307152334-00…. All of these sources will give you a sense of how people refer to themselves and what’s considered polite, appropriate, etc.
Hope this helps.
Jessie- thank you so much for this and your other articles for the Toast. Each of them makes my head and heart hurt and leaves me thinking and ruminating for days. And thanks to all you commenters- I learn SO SO much from your thoughtful (and civilized!) discussions.
Thank you so much for this. I’ve now spent the afternoon down a rabbit hole of Wikipedia-ing and article reading, beginning with Henrietta Lacks and ending with sundry unethical medical and psychological experimentations throughout history (“history” often meaning distressingly recently). It’s sickening me, yet an important reminder that while it’s easy to take medical advances for granted today, there’s so much to consider about whose backs they were built upon, let alone how they continue to be abused today.
Anthony Stokes met a tragic end, today.
Most of the people I work with don’t like the term “Native American” and don’t use it often, although they might use it in an official capacity. I don’t think that you’re likely to get side-eyed for using this term, and it is probably the term that’s least likely to offend on this list.