Sew, I Was Wondering . . .


Back in the 1980s (1981 or 1982) I was watching The Phil Donahue Show with the topic of the day the disease AIDS.  It was the first time I heard of the disease and recall being shocked that, one, it was so pervasive in the gay community, but, two, it was becoming pervasive in the heterosexual community.  I consumed the entire hour and wanted to know more.  The reactions of the some bigots in the audience floored me; one woman stood up and declared with palpable hate: “This is your gay disease. Who cares about your gay disease?”    I didn’t fully understand AIDS by any means, but I knew that any disease had to be taken seriously and this unforgiving and deadly disease even more so.  What difference did it make that gay men were more likely to contract it than anyone else (at that time)?

I learned a lot more about AIDS after that show and it wasn’t long before it dominated the national consciousness.  ACT UP! staged what many characterized as militant demonstrations because it was, frankly, the only way to demand action and demand research dollars toward understanding and destigmatizing the disease, increasing access to experimental therapies, and curing it.  The disease was (and remains) a world-wide scourge.  If radical demonstration wasn’t your thing, then others put their energy into awareness and acceptance and made quilts.

The quilts traveled the country and the world and served a dual purpose: they raised awareness and destigmatized the disease by promoting tolerance and acceptance of people first.  With public policy pressured on both sides, awareness grew, research dollars were committed, and in the  thirty-plus years since we all heard of HIV/AIDS not only have great strides been made in the management and treatment of the virus, but the world was made aware and a world-wide strategy was developed to make a difference.

Like any Op-Ed, this all seems rather simplified and finer points can be debated, but my point is this: mortality made a difference here.  Human beings were being cut down by a disease that didn’t discriminate against race, age, religion, or ethnicity.  And while the bigots kept equating it with the gay community, it didn’t discriminate on the basis of sexual preference either.  Better tests were developed to detect, treat, and manage the disease.  And people are closer to a cure today than they ever were.  But still too many are lost to this unforgiving disease every year.

Thirty years.

Sew, I was wondering, where is our quilt for metastatic breast cancer?  We have awareness out the ears: mission accomplished.  And for all the money raised for awareness, early detection, and refined treatment, men and women are dying of breast cancer.  One estimate puts Komen for the Cure funding for MBC research at 2%.  And “an analysis of cancer organizations from the Western world suggests that only about five percent of total cancer research funding goes toward metastatic disease of any cancer type.”  What the hell is up with that?

Unless you have been diagnosed with breast cancer you can’t begin to imagine the disgust when you see pink mixers, pink shoes, pink ribbons, pink lollipops, and pink everything else that makes profit off of your disease.  But when you’re dying of breast cancer?  Let me tell you, people, there is no word to describe the visceral repugnance that I feel for the corporations, organizations, and people who flock like moths to the pink flame.
captureSo rather than buy crap that you don’t need, unless you really do want a pink mixer in your kitchen–which is fair enough if you have a pink kitchen.  However, let us pool our efforts to construct a visual representation of the lives lost and threatened.  Let’s construct a quilt to display in our communities, in our regions, and to take to the heart of the nation.  Every nation, every state/province, every town, every person.  Too many squares, but we need research dollars committed.
We are dying.   Let’s convert those numbers to  tangible squares for every person who has/or has succumbed to metastatic  breast cancer.  Everyone needs to SEE the scourge that is metastatic breast cancer.
What do you think?
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8 Responses to Sew, I Was Wondering . . .

  1. Marie says:

    I love this post. I love this idea. I have one to make for my sister-n-law, who dies of MBC at 34, leaving my brother and nephew to deal with life without a wife and mother, respectively. So how to get it to start happening?

  2. Scott MacKenzie says:

    Here’s two cents from the Gay man: it is visually devastating to see even a section of the quilt, just by it’s scope, true enough. But it didn’t drive the research. Let’s face it, Ozzie and Harriet never went to see the quilt laid out on the Mall, nor did they care. The answer is WOMEN IN OFFICE. I firmly believe that. This country needs female legislators badly. The end.

  3. Scorchy,
    Great post, you have highlighted very eloquently the tragic situation that MBC awareness is in. As you write the AIDS Act Up campaign had a great impact and so resulting in real progress towards the healing of AIDS patients. they managed to turn around a certain ‘death sentence’ in to a real chronic disease in less than 30 years. We MBC people continue to fall off the perch at an alarming rate and it seems every tear at younger ages despite the billions that have been squandered on awareness. You would think that someone would one day say “hey this isn’t working!!!” wouldn’t you???
    The quilt is a lovely idea it gets people involved, achieves awareness and is NOT pink!!!! Sorry you received such abrasive comments across the ether for your simple request.
    I enjoyed reading your post very much. We can improve things if we unite. =)

    • Scorchy says:

      Thanks Joanna. I think the quilt is a great idea and I hope it takes off. I was really pleased to learn about it. I’ll post more about it to be sure.

      So many folks are working hard to raise awareness about MBC, but it’s hard to get people to warm up to a nightmare. AIDS–because it affects men, women, and children–speaks to a wider audience and people see the scourge (especially with those poor kids who either have it, get it, or a orphaned as a result). But a disease like breast cancer has been so profoundly feminized that it gets shoved into the corner by the patriarchy. Many are working to turn that around and that can be nothing but good and positive.

      Yeah, that was pretty off the wall. I opted out as quickly as I opted in. Good deeds notwithstanding, I have no tolerance for that level of profound (and toxic) inanity.

      Thanks for reading The Boob, Joanna! 🙂

  4. Strange you should mention this. There is a facebook group called the Inspired Metastatic Breast Cancer Advocacy group who are trying to organise just such a quilt!

    Eventually we want to start a dedicated quilt page. For lack of a better title at the moment it is known as the Lost Inspiration Quilt after the friends from Inspire that we have lost. I have a data base of about 130 that we know of – when I can recover all the data after my old PC blew its cool a month or so ago. I have been itching to get some people to do something.

    We also have a petitions to change the name of Pinktober to Metastatic and Breast Cancer Awareness Month. We are the ones who die, we are the ones whose deaths they raise the money on. PLEASE SIGN AND SHARE. For some reason this petition has been shared over 2000 times on facebook, but has only been signed by 917! This is for us – we have to make our voices felt.

    This is a grass roots organisation put together originally by members of the Advanced Breast Cancer forum on Inspire and we welcome members, ideas, and above all people prepared to DO something about all of this. If those of us with MBC ain’t going to do it, then who is. After all if bitch stands for Boys, I’m Taking Control Here … lets do some bitching!

    The percentage that Komen spends on MBC research is actually 1.7% and is the same as they spent on office furniture in the same period, if my sources are correct. Yes it was in the region of $34m but their budget was over $2b! Sadly 7% is the best figure I have seen, though there is starting to be a groundswell that is just starting to impact. This October (2012) Komen put out their first adverts mentioning and featuring MBC!

    No more itching, lets get bitching!

    I’m off to Southampton to get some fabric for the quilt…

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