Read a Czech translation of this post, done by Vera! Thank you, Vera!
In the furor of discussion on my post about breast cancer awareness campaigns which use exclusionary tactics, several commenters brought up some important points when we talked about why breast cancer has become such a high profile cause. Anna pointed out that breast cancer awareness started as a grassroots movement among women who were angry about the lack of awareness and the large numbers of preventable deaths going on, many commenters (including myself) pointed to the potential monetary gains to be reaped for companies which support charitable causes in order to be seen as socially responsible, and both kaninchenzero and Amandaw referenced the fact that breast cancer is a form of “no fault” illness, in the sense that people who get breast cancer are presumed to be innocent victims. The cancer, in other words, is not their fault.
This is not another post about breast cancer.
But it is a post about why some medical conditions become popular causes, and others do not. Because, in America, we definitely have ideas about what makes a good cause, and what does not, and a lot of those ideas are rooted in the idea of personal responsibility. This concept has deep roots in American culture and society, and it has pernicious and lingering effects which continue to this day.
The entire nature of American social policy is specifically structured around the idea that we can determine who is at fault for everything, that specific individuals can be faulted for things, and that those individuals should not be helped. Take the American approach to the poor. Despite ample evidence to the contrary, many people seem to believe that people should be held personally accountable for their poverty. Even though poverty is a classic example of an intersectional social issue in which the class one is born into, one’s race, and one’s gender all play a role, people persist in thinking that if poor people “just worked a little harder” or “showed some initiative,” then they wouldn’t be poor. I actually had a sociology professor tell me once that if the poor “weren’t so lazy, they wouldn’t be poor.”
Lung cancer was specifically brought up as a great example of “it’s your fault” in action. Lung cancer is the deadliest cancer in the United States, in terms of numbers of people who die from it each year (so says the American Cancer Society). However, it is not nearly as popular, as a cause, as breast cancer. Why is that? Because only icky gross people who smoke get lung cancer.
That’s right. Did you know that people exposed to carcinogens due to their jobs/social class/homes, second hand smoke, particulates in the air which cause cancers, asbestos, etc, don’t get lung cancer? Only smokers do. Fact! And that means that lung cancer can safely be ignored, as a cause, because people are personally responsible for getting it. I’ve known a few people with lung cancer in my day, and every one of them has had some version of this conversation over and over and over again during diagnosis, treatment, and recovery:
A: “I have cancer.”
B: “That’s terrible, what kind?”
A: “Lung cancer.”
B: “Oh.”
A: “…”
B: “Do you smoke?”
Cardiovascular disease is another example of a very serious medical issue which involves huge numbers of people and is not highly publicized. Sure, the American Heart Association has some PSAs out, and some branded products of questionable usefulness, but many people are not aware of the scope of cardiovascular disease and its causes. Screening, prevention, and treatment are not as freely provided as services to support people with more palatable conditions. Why? Because only gross fat lazy people get cardiovascular diseases, so it’s their fault, therefore, it’s not a social cause.
Diabetes, again, another condition which is deemed to be the fault of the person who has it. If you are diabetic, it must be your fault. In addition to displaying a limited understanding of diabetes and how diabetes works (hey, did you know that there are different forms of diabetes?), this is also not terribly beneficial when it comes to actually dealing with diabetes.
The list goes on. You get the point. If a medical condition can safely be blamed on the person who has it, we can safely and collectively ignore it, as a society. If we were to admit that these conditions should be social causes and should be addressed, that would be tantamount to saying that we should provide support to people regardless of fault. And that, as we all know, is socialism.
AIDS, strangely, is a condition associated with personal responsibility which has become a cause, to some extent, although not on the same level as breast cancer. I think that this is in part due to some serious grassroots lobbying on the part of very diverse folks. But at the start? AIDS was written off as “gay cancer” and ignored. It was only after people realized that things like a tainted blood supply, needlestick incidents at hospitals, and heterosexual sex could be vectors of transmission that AIDS started enjoying some popular attention. AIDS was also furthered as a cause when prominent members of society openly discussed the fact that they had AIDS, humanizing the cause. Yet, AIDS continues to be a highly stigmatized condition. Fundamentalist preachers continue to rant about how the gays are getting their compeuppance, for example, and people with AIDS are usually assumed to have gotten it because of risky sex or drug abuse (in all fairness, IV drug users are a huge risk group for AIDS, in part because social programs like needle exchanges are severely limited, because Americans are not interested in providing intervention for preventable diseases which are deemed to be the fault of reckless or morally unacceptable behavior).
Fibromyalgia is, I think, another great example of how Americans cannot deal with medical conditions when they cannot attribute fault or find a causative agent, bundled in with some serious sexism. Although it affects all genders, it is often assumed to be a specifically “female complaint,” and it’s laden with the double burden of being a “faker’s disease” in the eyes of the American public. Who are apparently incredibly knowledgeable about medical issues, especially treatment options, judging from the ever-helpful advice they provide people with all the time. When you can’t point to a causative agent of a condition, people are less likely to accept that the condition actually exists. Even when they are confronted with people who are obviously experiencing that condition.
Mental illness also falls into this category. Because we can’t point to something on a microscope slide, mental illness is assumed, on some level, to be fake or not real. And people with mental illness are assumed to be, in some part, responsible. They must be faking it, because the alternative explanation is that people can be sick without any clear cause, without any neat treatment or cure, and that is unacceptable.
In order to be an acceptable cause to support, a medical condition must be pure and untainted. Victims cannot in any way, shape, or form be responsible for their condition and the condition must have a clear and obvious cause. Thus, awareness campaigns and research and so forth ignore a panoply of serious medical issues, because they do not meet these criteria.
This means that numerous very serious medical issues in this country go underfunded and underaddressed. When education about issues is limited to issues which are considered blameless, people are missing out. Including people who may be at risk. When funding is limited to no-fault conditions, it means that serious issues are allowed to be ignored, and people with conditions linked with personal responsibility have a hard time getting respect, let alone treatment.
This disproportionately impacts some of the most vulnerable populations, like people of low income, who can exercise little choice when it comes to issues like medical conditions caused by occupational exposure, nutritional deficiency, and living in polluted communities.Like people with disabilities who could actually really benefit from, you know, funding for supportive programs.
The thing is that even conditions which can be clearly attributed to lifestyle choices are still intersectional in nature. Plenty of people smoke and do not get lung cancer, for example, just as plenty of people who do not smoke and do not have any other obvious risk factors in their medical histories do get lung cancer. Yet, the failure to even dedicate a little bit of time (comparatively, I am aware that there is ongoing research into lung cancer and that there are educational campaigns) to funding and awareness means that useful information about these conditions remains undiscovered or undistributed.
I was thinking about this lately during the flurry of outrage over domestic violence being listed as a preexisting condition. Domestic violence is another thing which is linked with some sort of personal fault or action on the part of victims. Where’s the outrage about numerous other things being listed as preexisting conditions? Why aren’t we angry about the fact that basically any medical issue/medical history under the Sun is considered a preexisting condition? The very idea of a preexisting condition is exclusionary and repulsive and disgusting.
It doesn’t matter how, why, when, or where the origins of a medical condition or disability lie. What matters is providing the appropriate intervention. To say this, however, is to undermine one of the cornerstones of the American belief system, which is why you so rarely hear it said in the mainstream.
This is so spot on.
I have schizophrenia (often viewed as THE big bad mental illness) and a healthy slice of the stigma associated with that condition comes from association with drug abuse, homelessness, and other “icky” things. I’ve also just gone through cervical cancer (which it looks like I got off lightly from… keep ‘em crossed!) and, while I’m pleased to see the level of awareness for HPV is increasing, I can’t help but think I would have copped a little less shame a decade ago.