Tuesday, March 24, 2009

Don't walk. Sit.

Above: employees of an Indiana health plan promote "breast cancer awareness" by wearing pink and making themselves into a ribbon. Below: from Rex Wockner at wockner.blogspot.com; the AIDS Coalition to Unleash Power in Chicago. AIDS activists demanded national healthcare, but mostly didn't figure out how to make common cause with other people with other illnesses.

Over at DuncanCross.net, a blog I've just started reading, the pseudonymous Mr. Cross urges us to consider not walking. Not going on breast cancer walks, Crohn's disease walks, polycystic kidney disease walks, etc, etc. Don't walk, he says:

To me, as a sick person, one of the worst aspects of these organizations is their aggressive insistence that the best way to help sick people is by funding for-cure research. That is a lie. Sick people face a lot of challenges, most of which cannot be deferred until a cure is found. If you’re sick, start talking about those challenges as you face them, and try asking for help.

If your concern is a specific person, get more involved in their life; ask them what you, specifically, can do to help them, specifically. For my friends who are sick, I make an effort to be there - to be available, to help them when they need it, maybe cook a meal or drive them to an appointment, but mostly to remain a presence in their lives. Look at the posters and the ads for these organizations: they’re clearly suggesting that sick people can only find community among their fellow-sufferers, as if our only hope to rejoin humanity is via the distant promise of a cure. That, of course, is false - and you can prove it false simply by refusing to be marginalized if you’re sick, or by being a friend to someone who is sick.

I hope you'll consider heading over there to read this essay in full.

One thing that Mr. Cross briefly considers is the origin of all of this walking, and of this marketing strategy. He traces it to breast cancer. My own read is that the breast cancer marketers (as opposed to breast cancer activists) got it from certain parts of the gay community's efforts to respond to AIDS in the 1980s. It seems to me that the Avon-sponsored pink ribbon element of the response to breast cancer must have looked quite closely at AIDS, then tried to find all of the elements of the successful response to AIDS that could be made completely banal.

There are always people in every disease organization who try to defy the vague sense of corporate uplift to have some relationship to the real lived experience of people with the disease. That's because the basic impulse of these organizations--try to work to stop diseases that make people suffer--is a genuinely decent one. But once they start taking sponsorships and decide to stop making tough political choices they will inevitably succumb to banality, because that is what they believe is required to make this kind of fundraising strategy work.

In the case of breast cancer, it is also partly a a story of how the practical innovations of feminism are often appropriated and then depoliticized. Barbara Ehrenreich has a brilliant description of her own reaction to the kitschification of breast cancer in a now-classic essay, Welcome to Cancerland. A brief excerpt of this essay, which merits reading by anyone who has felt a vague discomfort about pink ribbons but has never been able to say exactly why:

It is the very blandness of breast cancer, at least in mainstream perceptions, that makes it an attractive object of corporate charity and a way for companies to brand themselves friends of the middle-aged female market. With breast cancer, "there was no concern that you might actually turn off your audience because of the life style or sexual connotations that AIDS has," Amy Langer, director of the National Alliance of Breast Cancer Organizations, told the New York Times in 1996. 'That gives corporations a certain freedom and a certain relief in supporting the cause." Or as Cindy Pearson, director of the National Women's Health Network, the organizational progeny of the Women's Health Movement, puts it more caustically: "Breast cancer provides a way of doing something for women, without being feminist."

There have actually been plenty of AIDS versions of this kind of strategy--but that is for a longer post than this one.

Seeing the worst excesses of these ways of doing things, one would wonder, as Duncan Cross does, why anyone would want to do disease-specific activism of any kind. In the case of AIDS it was because of the very specific stigma associated with the disease. People with AIDS in the early 1980s died social deaths--people wrote them off as essentially dead before they were biologically dead, and ostracized them--unless they demanded a place both in their own communities and in the larger world. The medical community mostly avoided AIDS whenever it could and often responded poorly when they couldn't avoid it. And most leading researchers were uninterested in the problem; pharmaceutical companies had not yet jumped in because they couldn't see that there was going to be any significant market to be gained out of it. Organizing around their disease identity was built around a very specific and urgent political situation. And the urgency of AIDS activism came not only from the agenda of advocating for people with the disease, but also from trying to defend the communities that were under the threat of so many people dying.

The question is, does that situation exist anymore? Or is there more hope in people with different diagnoses banding together?

The disability rights movement in its modern form did not exist before the late 1960s and early 1970s. The seminal moment in the United States came in 1977 when the various disability organizations--organizations for the blind, the deaf, disabled veterans, and so on--came together to fight for implementation of Section 504 of the Rehabilitation Act of 1974. It was a relatively obscure piece of legislation but it made a huge difference in employment opportunities for people with disabilities, forced school systems to provide real education for a new generation of disabled people, and ultimately led the way to the Americans with Disabilities Act. A dramatic sit-in in San Francisco, including people with all kinds of disabilities, got the legislation passed and created the new face of the new, united, and militant disability rights movement. The movement saw a political opening--Jimmy Carter getting elected--and used it. ( Joseph Shapiro is a fantastic NPR reporter who has made disability his beat: his description of the 504 sit-in is here.) The key element of this movement and its success was the decision by many different disability constituencies to unite.

For people who need change because their own bodily circumstances require assistance from society and from the healthcare system, the history of AIDS activism and the disability rights movement show two things:

1. the credibility of your own circumstances can be a potent political weapon.
2. though that first central tactic can win victories, the largest and most enduring gains are won by tying your own circumstances to those of others.


I hope to write more about these two points, but in the meantime, here is an 18-minute documentary about the 504 protests that shows these two points in action. And below, a link to what the folks over at Breast Cancer Action are up to these days: their annual Think Before You Pink effort to end what they describe as "pinkwashing". ThinkBeforeYouPink.Org

The Power of 504:
part 1, followed by part 2


Duncan Cross said...

Hi Joe - you could be right about AIDS activism being the ur-source of the model. I wonder if most organizations aren't copying the breast cancer model without realizing that it was copied from AIDS activism in the first place. Certainly, a lot of these organizations are lacking the social activism element that typifies many AIDS orgs.

Regarding the 504 sit-ins, I think a pretty good example of the problem I wrote about was the lack of engagement on the ADA Restoration Act last year. As near as I can tell fairly few disease orgs. got involved, even though it had tremendous consequences for people suffering chronic or catastrophic diseases. The bill passed without their help, fortunately.

Anonymous said...

The obverse of this cockamamie marketing is that if you take a long walk or a long bike ride, just to see if you can, or just to see what there is to see, everyone wants to know what you're raising money for. And if you're not raising money for some disease, how come not? What's the matter with you that you just want to feel the wind in your face and see what you can do? Strange.
---emily anon

Laurie said...

Great post! And I really enjoy Duncan Cross's writing and am glad to see it highlighted here. As a patient with rare diseases the entire colored ribbon/ disease awareness month/commercialization effect has been lost on me. Happy to sponsor someone I love, and can't argue with the fact that research and true innovation could change people's lives, but certainly buying certain yogurt to turn in lids, etc isn't going to make a difference for me.( Better health insurance that covers treatments to halt disease progression will, but that's another post altogether.)

Long story short--you both raise excellent points, and there are many ways to positively and directly impact a patient's quality of life that have nothing to do with ribbons or marketing.