Thursday, September 30, 2004

Greetings from my parents' house, where despite a thin veneer of calm, everyone appears to be just this side of hysterical. I'm pretty sure this is normal pre-wedding behavior, and that I'll get my reasonably-sane family back in a few days.

I can't link to the article, because I read it on the plane in some random magazine, but according to something I read, there's a backlash against the anti-breast cancer "pink ribbon" campaign. The backlash is spearheaded by Barbara Ehrenreich, who is herself a breast cancer survivor. They're uncomfortable with the pink ribbons on two grounds. First of all, all sorts of mainstream companies are now peddling pink ribbon merchandise, ranging from Jimmy Choos to lip gloss. While a portion of the profits generally goes to breast cancer research, it's often a pretty small portion, meaning that some company is making a lot of money off of these "breast cancer awareness" products. It's a little galling to think someone is using women's misery to shill merchandise.

But the more significant criticism is that the pink ribbons and attendant media give the wrong idea about the status of breast cancer research and treatment. The message of the pink ribbons is relentlessly cheerful and uplifting: it's all about success and empowerment. It's about surviving breast cancer and looking great while you're doing it and then running a 5K. And while it's true that great strides have been made in the treatment of breast cancer, it's also true that an awful lot of women still die of it. Pink ribbons, according to this critique, are a little too nice and happy and feminine. What we need is a movement based on political activism that demands more research, rather than one based on consumerism that urges you to look pretty while sending a tiny bit of money to breast cancer charities. We need a little less Avon Walk for Breast Cancer and a little more March on Washington. We need a little less uplift and a lot more outrage.

I'm not sure that I totally agree that the pink ribbon stuff ignores the breast-cancer death rate. But I do think that sometimes in the urge to be uplifting and empowering, people who discuss disease and disability ignore or downplay the stories that aren't as happy or pleasant. I've been thinking about this a bit with regards to cognitive disabilities, because it relates to my family.

When you see media depictions of cognitively disabled people (which is to say people who in the past would be called mentally retarded), you usually see pretty high-functioning people. Often, they have Downs Syndrome, and they're usually high-functioning enough that they can go to school, hold down a job, have a family, and otherwise live a pretty normal life in the community. This is absolutely an accurate depiction of very many cognitively disabled people, and it's wonderful that the general public is now more aware of their disabled neighbors' potential. It's terrific that more resources are devoted to helping these high-functioning folks succeed and live independently.

But there are still cognitively disabled people who will never be able to have that kind of life. My uncle is one of them. He's not a high-functioning person with Downs: he was profoundly brain damaged at birth, and he functions roughly on the level of a three-year-old. He is incapable of understanding basic concepts like money or planning, which are pretty crucial to independent living. He has significant medical problems, and he's incapable of monitoring his own health. With a lot of help, he can take care of his own hygiene, but he needs to be supervised when using things like razors. He is able to work in a sheltered workshop, but he needs to be constantly supervised.

He currently lives in a pretty wonderful group home with three other adults who function on a similar level. It's a terrific arrangement for him and for my family, but it's very expensive, and the cost is entirely covered by the state. Not surprisingly, the state would like to be relieved of this financial burden, and every few years they approach my grandmother about "coming up with a plan to integrate" my uncle "back into the community." Such plans work great for high-functioning cognitively-disabled people, for whom I think they're designed, but for my uncle, they're a sick joke. He can't live alone. He can't cook for himself, since he can't read a recipe or handle knives, and I'm not sure he understands the concept of burning down the house. He understands the telephone in the sense that he knows he's talking to someone who is not there, but he can't dial for himself, so he wouldn't be able to contact anyone if he had a problem. He needs to be supervised around the clock, and if the state stops paying for the group home, that means that my family will have to figure out a way to make that happen. "Integrating him back into the community", in his case, is a euphemism for throwing him and my family to the wolves.

I really understand why advocates for disease and disability focus on success stories. I understand that in the past, cancer was seen as an automatic death sentence and disabled people were all seen as being caught in a state of permanent dependence. It's empowering to show the best-case scenario, and we all need to know that the success stories are possible. But from a public-policy standpoint, I think it's worrisome to focus exclusively on the best cases. We need simultaneously to celebrate increases in breast cancer survival and realize that far too many women still die from the disease. (And we certainly don't need to pressure women with breast cancer to be the upbeat, fashionable happy campers who feature in a lot of pink ribbon campaigns.) We need simultaneously to give disabled people the tools they need to live independently and to provide for people for whom independent living is not possible.

Whew. That was a long post. Must go now before the family returns and the chaos begins anew.

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Breast Cancer survival
Common Breast Cancer Myths

The first myth pertaining to this disease is that it only affects women.

Second myth that is associated with this disease is that if one has found a lump during an examination, it is cancer.

Third is that it is solely hereditary

The next myth associated with breast cancer is downright ridiculous. Would you believe, that in this day and age, some individuals still think that breast cancer is contagious?

Conversely, some individuals foolishly believe that breast size determines whether or not one gets cancer.

Finally, another myth that is associated with this disease is that it only affects older people. This is not so. Although the chance of getting breast cancer increases with age, women as young as 18 have been diagnosed with the disease.

You can find a number of helpful informative articles on Breast Cancer survival at

Breast Cancer survival
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