I was talking to my Dad last week and he reminded me that it was seven years ago that day that my Mom had been diagnosed with breast cancer. Until then, I’d never made the connection between that event and the fact that October is breast cancer awareness month. As if there hadn’t been enough going on three weeks after 9/11, I now certainly had plenty to keep me up at night. Fast forward seven years and things are going well with my Mom. Although she’s never fully regained all of her energy since the treatments, overall she is back to being herself and has been for years now.
When all this came about, I was very grateful for having spent so many years in the US and how illness (or at least some types by now) is treated here versus many other countries, like Hungary, where my Mom’s diagnosis occurred. In too many cultures and communities, illness of all kinds remains a taboo. Not only is it not okay to tell people about it, often doctors won’t even tell patients their diagnosis. While awareness programs may seem superfluous to some*, it is important to remember that in many communities it is not only not the standard to talk and think about illnesses (and thus, for example, take preventive measures when possible), but it is a topic to be avoided outright due to associated embarrassment.
What struck me as I was talking to friends about my mother’s situation was how many among them had a close family member or friend who’d also had breast cancer. It was very helpful to hear about related experiences. But were it a taboo to discuss issues of this sort, I would have been left on my own to deal with the difficult news. Point being, there is value in talking about things of this sort at various levels: from contributing to prevention efforts to the emotional support that can come of it.
Recently, I received some notices about interesting pink-themed undertakings going on right now. One is a Pink group on the photo-sharing site Flickr that seems to be raising money for breast cancer awareness in various European countries. Another is an innovative idea by sociologist Dan Myers who has decided to wear pink every day for the month of October to raise awareness and collect donations. Support him if you can.
Of course, there are serious critical ways of looking at the pink ribbon campaign. For a couple of years now, I’ve had the book Pink Ribbons, Inc.
I’ve been thinking about a way to contribute to these efforts myself this year and I have an idea. I’m putting some finishing touches on it. I’ll post about it in a bit.
[*] A few months after my Mom’s diagnosis, I still remember that there was an article in The Daily Princetonian making fun of the ribbon campaign. Like I have done above, a response to that piece tried to explain why these do serve a purpose.
{ 7 comments }
Maureen 10.11.08 at 5:56 pm
I haven’t read Pink, Inc., but Barbara Ehrenreich’s “Welcome to Cancerland” covers a lot of that territory and is WONDERFUL. You can find that essay here: http://bcaction.org/index.php?page=welcome-to-cancerland-2
DX 10.11.08 at 6:21 pm
My problem with this sort of thing is that it shapes the discussion towards very specific concerns: research and awareness, instead of care and advocacy. So it’s okay to raise money for a cure, but nobody talks about how poor victims are going to pay for that cure. It’s okay to talk about awareness in clinical terms, but not about the significant social and economic obstacles facing someone who is ill. This isn’t just true for breast cancer or cancer more generally, but it’s the model most disease-oriented groups follow. I have Crohn’s disease, and the CCFA is as good (or bad, as it were) an example as any.
My guess is that these sorts of organizations tend to be founded and maintained by relatively wealthy people; they have the necessary time and money and connections, and for them the problem really is simply the lack of a cure. Unfortunately, this ends up shaping how we think and talk about disease in ways that ignore – or even harm – people farther down the socio-economic ladder. For example, most efforts focused on awareness and early detection ignore the fact that for many women, the reason they aren’t getting mammograms is that they have inadequate or non-existent health coverage.
This isn’t to say awareness programs are bad – simply inadequate, so far, for millions of people struggling with illness.
Bill Gardner 10.11.08 at 7:42 pm
DX @ #2:
So it’s okay to raise money for a cure, but nobody talks about how poor victims are going to pay for that cure.
You raise a good point. Some organizations do a good job on both fronts. Case in point: the Cystic Fibrosis (CF) Foundation. They sponsor a lot of good research, but they also anchor a set of CF care centers. These centers have been very successful in promoting high quality CF care and engaging families in that care. I do not think they provide financial assistance to CF families. But do we want charities doing that? I think we should focus our energy on political action for good national health insurance.
Knitting Clio 10.11.08 at 9:25 pm
I haven’t read Pink Ribbons, Inc. — it sounds similar to arguments made in the website http://www.thinkbeforeyoupink.org.
Fr. 10.11.08 at 10:41 pm
If you improve the TCP/IP protocol, making it faster and more reliable, you improve the situation only for people who already benefit from an Internet connexion. If you manage to improve both at the same time, you are doing well.
If you spend large budgets on cancer research in order to improve means of treatment, you improve the situation only for people who can afford adequate coverage. If you manage to fight for both at the same time, well done!
In both situations, inequalities rise with the first successes.
Eszter Hargittai 10.13.08 at 1:11 pm
While I appreciate the comments about how in a poor health-care system, awareness can only do so much if people can’t afford to undergo detection or treatment, awareness is still important. Consider, for example, countries where the health care system is much better. For example, in Hungary (example mentioned in my post), the system is much different from that in the United States and so people are not required to make the kind of expenditure for either testing or treatment that they are in the U.S. But this doesn’t itself solve the problem. If people don’t realize they should be getting tested regularly and they don’t realize that it is okay to have cancer and it is something you can talk about then they’re left in a very different position compared to a culture where such constraints aren’t so prevalent.
Also, while I whole-heartedly agree that we need serious effort to get health care in a reasonable state in the US, does that necessarily mean that we put everything else aside? Given that it’s a huge struggle with no guaranteed immediate solution, it may be better to diversify efforts.
Fr. 10.16.08 at 12:54 pm
The problem is that many decision-makers do not share your view of a “policy compound†made of awareness within better coverage. Most of them sense there is a nice, cheap solution which consists in telling everyone to get screened, while the other one will cost all sorts of costs and eventually fail [insert verification here]. Encouraging awareness encourages this biased view, even though there excellent reasons for increasing awareness in principle.
That would be my position: you need a good health system (well, a system would be a first step) first if you want a population with less health care inequalities (an egalitarian position, yes). There is a lexicographic order for both, if you prefer, to the advocacy for coverage and awareness.
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