Pinktober Guest Post: Feisty Blue Gecko

Pink-to-ber n A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is exceptional in a couple of ways. First of all, it’s just exceptional. It is a superb response to my candidate for this year’s Biggest Idiocy in Pink award. It is exceptional in the strict sense because Feisty Blue Gecko does not, thank God, have metastatic breast cancer. However, I am including it in this series as an exception because of the first reason. I’m sorry if I just made you dizzy. Please don’t forget to check out Feisty Blue Gecko’s blog, and let’s give her some comment love here. Now, over to FBG:

. . .

It takes quite a lot to rev my temper engine, but this is beyond my comprehension. Offensive, insensitive to the extreme and in my view, utterly useless.

These are just a few reasons that this has incensed me:

• October 13th is the sole day dedicated to Metastatic Breast Cancer, in itself woefully inadequate.
• Many women have had surgery which means that not wearing a bra is in the least extremely uncomfortable.
• Many of us are trying to hide the fact that our surgery brings significant asymmetry – not wearing a bra would be excruciatingly embarrassing.
• Most surgery for breast cancer brings at best pain and at worst restriction in range of movement.  Waving your arms in the air (as in the image above) is another indication of how far removed this is from reality.
• What about men?????

So, what on earth could not wearing a bra for a day possibly achieve? 

Not awareness. Not respect. Not much needed research. Not action.

And certainly not a cure.

Flight of the Tatas: Summary and Analysis

Whew! That was a Telling Knots first! I’d like to put things into perspective now with a summary and my analysis of the issues.

On the blog

I first became aware of the Flight of the Tatas event when fellow-blogger Scorchy Barrington posted a link to this article about it in the  Wall Street Journal online European edition. This was on Wednesday, July 3rd. I published a post about the event and my first thoughts on it on Thursday, July 4th.  Beginning on Friday, July 5th and continuing today, July 6th some people who had never commented on the blog before and who appeared to be unaware of my orientation in writing it began to write comments that I and many of my friends found offensive. Some of my friends and I began to respond in kind. Things went down from there. Today I cleaned up the ad hominem attacks and the strongest language. Comments are still open, but if the level of discourse degrades, I’ll shut it down.

Behind the scenes

I spent some time on July 3rd and 4th looking for any evidence that Living Beyond Breast Cancer (LBBC) was aware of this purported fundraiser. All I found was their logo among the sponsors on the Flight of the Tatas home page. Nothing else. I decided to contact them. Things were further complicated by some technical issues on the LBBC site that resulted in my first two emails (to LBBC development and communications addresses) being returned as undeliverable. I sent my third to the “mail” email address on July 4th and it did not come back.

On Friday, July 5th, Jean Sachs, the CEO of LBBC replied to my email. I published her message in my blog that day. I found her response completely reassuring.

Analysis: What’s the problem with Flight of the Tatas

Because at least a couple of the comments seemed to me to be genuinely puzzled about why this event offended me and so many others, I decided to spell it out more carefully. There are two issues specific to the July 4th Flight of the Tatas event, and there are some more general issues.

Specific Issues

According to the message from Jean Sachs, the event used the Living Beyond Breast Cancer name and logo without permission. I am no lawyer, but I wouldn’t be surprised if this were a copyright infraction or something of the sort. That’s one issue.

Another specific issue is that LBBC were not consulted, were not asked if they wanted to be a part of this event. It is as though the event organizers just put down the first breast cancer organization they came across or perhaps knew from personal contact. This is bad corporate manners, bad event organizing and very arrogant.

It must also be said that many people in the not-for-profit economy do not believe that all money is the same, do not believe that it doesn’t matter where donations come from. Some people and some non-profits feel that it is wrong to take donations of money that was gained through exploitation. I have personal experience with two very different organizations that have turned down sizable donations because they did not want to give the donors the legitimacy that accepting would have conferred.

General Issues

Why is an event featuring “a bevy of topless skydivers” offensive to so many people who have breast cancer and/or who are active in breast cancer awareness?

Sexualization of breast cancer in fundraising and awareness campaigns is a very sensitive issue. This can be seen, not only in the event we’re talking about now, but even in more mainstream campaigns. There are many reasons to object to it:

* It tends to portray breast cancer as a condition that damages our identity as women, rather than as a disease that kills almost one-third of the people affected by it.

* Breast cancer does not strike only at women. Men get breast cancer and men die of breast cancer.

* Slogans like “save the tatas” (which was not invented by the organizers of this event) tend to present women as sexual objects and give the impression that the worst thing that happens to someone who has breast cancer is that they may lose their breasts, and that this loss is catastrophic.

* Slogans like “save the tatas” are semantically similar to slogans like “save the whales”, further tending to make women “other than”, to ignore their full human existence.

Breast cancer is not cute. Breast cancer kills people. In all likelihood it will kill me and at least two of the commenters (that I know of) in the July 4th thread. This is a life-threatening illness. Those of us who object to this trivialization and sexualization tend also to object to these slogans and the various pink campaigns wherever they appear.

These are wonderful topics for further conversation, but let’s all remember that we can disagree with respect. Ready, set, go!

Flight of the Tatas: LBBC Responds

Yesterday I posted the text of my email to Living Beyond Breast Cancer about their supposed association with a topless skydiving event in Las Vegas that claimed to be raising money for LBBC.

It is with great pleasure that I can confirm that Living Beyond Breast Cancer (LBBC) had absolutely nothing to do with Larry Flynt’s Flight of the Tatas event on July 4, 2013. I just received the following email from Jean Sachs, CEO:

Thanks for your email regarding the Flight of the Tatas event.  I apologize for not responding sooner but LBBC was closed yesterday and most of my staff are out today as well.

 

I can tell you that LBBC was not a sponsor of this event.  We never gave the organizers permission to use the LBBC logo, never agreed to be the beneficiary and, in fact, only learned of the event on Wednesday, July 3rd.

 

LBBC’s marketing staff member Kevin, copied on this email, will be reaching out the organizers of this event on Monday.

 

I will be on vacation next week but if you would like to speak with me directly please give me your number and I will call you.

 

Best,

 

Jean

Thank you, Jean Sachs and LBBC, for responding so rapidly and for assuring us of the integrity of the organization. You’ve made many people feel much better.

Flight of the Tatas? Really?

Breast cancer cell. Not what Larry Flynt has in mind, I’d wager.

I was already simmering with anger about the trivialization and sexualization of breast cancer when I wrote yesterday’s post about men with breast cancer. My rage boiled over when I saw that a fellow rabble-rouser living with breast cancer, my friend Scorchy Barrington, had posted a link on Facebook about the single most tasteless breast cancer fundraiser I have ever heard about: “Flight of the Tatas”. (Sorry, I refuse to link to their site.)

Here is the first paragraph of the press release that was published in the Wall Street Journal online European edition under the disclaimer “The Wall Street Journal was not involved in the creation of this content”:

LAS VEGAS, July 3, 2013 /PRNewswire/ — Larry Flynt‘s Hustler Club, the most audacious gentlemen’s club in Las Vegas, will host “Flight of the Tatas,” a topless charity skydive beginning at 7 AM on Thursday, July 4, 2013 in Las Vegas, Nevada. Benefiting the Living Beyond Breast Cancer Foundation, a nationwide non-profit organization dedicated to supporting women affected by breast cancer, the unique event will attempt to break the Guinness World Record for the most topless skydivers. LBBC empowers all women affected by breast cancer to live as long as possible with the best quality of life.

Participating in this display will be an “adult entertainment legend”, an “adult film superstar”, and a celebrity magician, “along with a bevy of brave and daring topless jumpers”.

The fundraiser is being sponsored by Larry Flynt’s Hustler Club & Casino and Hustler Hollywood, among others. It is taking place today, July fourth. This is supposedly a benefit to help Living Beyond Breast Cancer (LBBC), but I could find nothing in the press release or the dedicated web site that indicated how much of the money raised would go to LBBC. In fact, LBBC is listed as a sponsor along with “Little Pussie Big Cock” and various of Larry Flynt’s Hustler enterprises (and others).

There is a “Donate for Breast Cancer Research” button on the home page. That’s all I found. I am writing to LBBC to try to get more information, but the event is today. I’ll post whatever I hear from them. I have rarely wanted more sincerely to be shown to be wrong in my assumptions. (The text of my email to LBBC’s development people is added at the end of this post.)

Now, I am not a “citizen journalist”. I am a woman who has metastatic breast cancer and a blog, a feminist with left-leaning social and political ideas. I have been known to displace my fear and anger about the cancer that is trying to kill me onto other targets. But even if that is what I’m doing now – so what? This strikes me as a very deserving target, indeed.

A more blatant example of trivialization and sexualization of breast cancer can hardly be imagined than a “Flight of the Tatas” in which “a bevy of topless skydivers” will attempt to beat the Guinness world record for jumping out of airplanes half naked and then land at a “gentlemen’s club” owned by that monument to taste and respect for women, Larry Flynt.

The event is today. By the time you read this, it will be over, most likely. Nevertheless, I’d like to hear your thoughts on it. Am I just an old school feminist? Is this as disgusting to you as it is to me?

Addendum: Text of my e-mail to LBBC’s development staff

I was extremely surprised to find out that LBBC is listed as both the beneficiary and a sponsor of Larry Flynt’s “Flight of the Tatas” event taking place today in Las Vegas. Can you tell me, please, what percentage of funds raised by the event was promised to LBBC and if this is a percentage of the net or gross intake from the event?

It seems an odd sort of event for a breast cancer organization to be associated with.

My blog post on Flight of the Tatas is at https://tellingknots.wordpress.com/2013/07/04/sexualization-of-breast-cancer/

Please feel free to comment on the blog or to contact me directly. I am very interested in knowing how LBBC’s involvement with Larry Flynt’s Flight of the Tatas event came about.

Thank you very much.

The Komen Organization in Numbers and Words

Figure 1. Total expenses of the Komen organization for the year ending 31 March 2012.

I love the Internet! With thanks to my friend GG, a stellar webcomber, I have been spending the last couple of days studying the most recent independent audit of the Susan G. Komen Breast Cancer Foundation, Inc. The audit is available to all as a PDF at that link.

First, the numbers

The Komen financial year runs from the first of April through March thirty-first. The most recent independently audited annual financial statement dates from March 31, 2012, and this post is based on those numbers.(*)

Figure 2. Gross breakdown of Total Expenses from Figure 1.

The good news first. Komen spends a relatively small portion of income on support services–about 19% of total expenses(the blue slice of the pie at the left). These support services expenses consist of fund-raising costs ($52,118,804 or 69%) and general/administrative costs ($23,064,504 or 31%).

The largest portion of Komen income, about 81%, is very appropriately spent on program expenses (the green slice). I am particularly interested in taking a closer look at how that $318,281,722 is spent.

Figure 3. Breakdown of program expenses.

There are four categories of program expenses: Research (21% of total program expenses), Public Health Education (44%), Screening (16%) and Treatment Services (8%). The pie chart at the right shows the breakdown.

The lion’s share, of course, is spent on “public health education”. I assume this means awareness campaigns. About a fifth of program expenses are invested in research, approximately the same amount in health screen and treatment services.

Now the words

The  Komen organization was founded in 1982. At that time it made enormous sense to make massive investment in public education and awareness, to dispel the fear that surrounded the word “cancer”. Young people today would have trouble understanding how terrifying the illness was; the word was rarely even pronounced aloud. People were too frightened to examine themselves and sometimes even to go to a doctor if they suspected something. After all, the reasoning went. It’s a death sentence whether I get treated or not.

So much has changed in the more than thirty years since that time. Cancer is now seen as a serious and treatable illness, rather than a death knell, and even metastatic cancer is approached as a chronic disease. Most women in the West have been taught about breast self-examination and breast exams are a regular part of the preventative medicine protocols of hospitals, clinics and insurers.

Moreover, today’s medical thinking and standard of practice is rethinking its approach to mammography, moving toward starting later and repeating less frequently in most cases. The American Cancer Society’s recommendations now call for:

• Yearly mammograms are recommended starting at age 40 and continuing for as long as a woman is in good health
• Clinical breast exam (CBE) about every 3 years for women in their 20s and 30s and every year for women 40 and over
• Women should know how their breasts normally look and feel and report any breast change promptly to their health care provider. Breast self-exam (BSE) is an option for women starting in their 20s.

Is the Komen mission still relevant in 2013?

I’d prefer to answer a slightly different question. Do we still need a large, well-known breast cancer charity in 2013?

Yes, of course. But as the world has changed since 1982, I suggest that the Komen organization’s mission should change. In a country where fewer and fewer people have access and the means to pay for medical care, I suggest that Komen is well placed to increase the proportion of income spent on treatment services. Perhaps individual treatment grants or matching funds or helping to pay for the operation of breast clinics could be considered.

I suggest that more of the organization’s income should be invested in research, both clinical research and basic research. The more we know about cancer, the better equipped we will be to treat it, perhaps even prevent it. I don’t have a personal stake in this; today’s research is not going to benefit me. But think of the generations it could help!

My proposal, then, would be more of a three-piece pie: a third of program expenses to public health education, a third to research and a third to treatment services. What do you think?

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(*)The pie charts were made with the free Create-A-Graph tool available in the Kids’ Zone of the American National Center for Education Statistics.

Discrepancies in totals are due to rounding off or to my own arithmetic incompetence. The original figures are can be seen at the link to the independent audit in the first paragraph of this post. I welcome comment and correction.

In the Land of Invisible Women by Qanta A. Ahmed

In the Land of Invisible Women: A Female Doctor’s Journey in the Saudi Kingdom by Qanta A. Ahmed

My rating: 2 of 5 stars

The writing ranges from indifferent to awkward, but that is not the only reason I rate this books as merely “ok”. It had the potential to be so much more than it is.

Dr. Qanta A. Ahmed is capable of close observation–no critical care physician can lack this ability–and some of her descriptions are very closely observed, indeed. It is a shame that these are mostly limited to the physical appearance of the people she meets and of their clothing, homes and cars.

Yet we cannot call Ahmed shallow because the religious experience she underwent in the Kingdom was clearly deeply felt. I am disappointed that she did not spend more time exploring it and less time looking for well-worn metaphors to describe it.

The main problem with In the Land of Invisible Women, in my opinion, is that it never quite seems to decide what kind of book it is. Is it the description of the author’s religious itinerary? Then why leave that almost exclusively to the section on her Haj (pilgrimage to Mecca)? Is it the story of a Western-trained double-boarded physician who happens to be a woman practicing in the very different and restrictive conditions experienced by female physicians in the Kingdom? Then tell us more about that.

Is this a book about Saudi culture? Then spend less time on describing cars, jewelry and clothing and more time on behavior, attitudes, laws and social expectations. Is it a book about the history of Wahabi extremism in Saudia? Then write it as a history and don’t try to squeeze it in as background in artificial-sounding conversations.

The main problem I found with this book is its lack of focus. There is so much potential here for a riveting memoir or a fascinating analysis. Ahmed sold herself short by taking the easy way out.

This book will be particularly interesting to people with little or no knowledge of Islam, people who don’t know many Muslims. Think of it as a long, chatty letter from the friend of a friend and you won’t be as disappointed as I was.

Not a bad book, just not as good as it might have been.

Visit my Goodreads page.

Letter to a mother who died of breast cancer

This letter was written by Karen Cook, author of What Girls Learn, ten years after the death of her mother from breast cancer. It is reblogged with permission from Shaun Usher’s wonderful blog, Letters of Note: correspondence deserving of a wider audience.

This letter both moved me and empowered me. I’ve been writing a lot about my own death and my own feelings about it. I have no living children, but there are people who love me. Karen Cook’s letter caused me to think about them for a change – not just my own little self.

The letter is a little long, but entirely worth the few minutes you’ll invest in reading it.

* * * *

Dear Mom,

What time was I born?
When did I walk?
What was my first word?

My body has begun to look like yours. Suddenly I can see you in me. I have so many questions. I look for answers in the air. Listen for your voice. Anticipate. Find meaning in the example of your life. I imagine what you might have said or done. Sometimes I hear answers in the echo of your absence. The notion of mentor is always a little empty for me. Holding out for the hope of you. My identity has taken shape in spite of that absence. There are women I go to for advice. But advice comes from the outside. Knowing, from within. There is so much I don’t know.

What were your secrets?
What was your greatest source of strength?
When did you know you were dying?

I wish I had paid closer attention. The things that really matter you gave me early on—a way of being and loving and imagining. It’s the stuff of daily life that is often more challenging. I step unsure into a world of rules and etiquette, not knowing what is expected in many situations. I am lacking a certain kind of confidence. Decisions and departures are difficult. As are dinner parties. Celebrations and ceremony. Any kind of change. Small things become symbolic. Every object matters—that moth-eaten sweater, those photos. Suddenly I care about your silverware. My memory is an album of missed opportunities. The loss of you lingers.

…Please read the rest of the letter here.

O is for Offensive.

I am not very good at the language of art criticism or of feminist deconstruction, but I’m giving both a shot in this post. Earlier this week I had to have some studies done at the imaging center of the breast clinic of a local hospital. (Results: Everything is pretty much the same, but the radiation several years ago caused annoying changes in some of the bones in my chest; also my liver is an iffy character and we need to keep an eye on it.) I am not writing today about the tests or my anxiety. I’m writing about this poster.

The words are not the problem. Lower left – hospital name (Misgav Ladach) and logo. Lower right in the pink block “Breast Clinic” and in the blue, “Health First”, the hospital’s slogan. The offense is in the images.

At the left we have a man’s left hand extending from a crisp, white sleeve, looking unnaturally large in comparison to the woman’s. The hand is open, thumb extended, fingers straight. This is a position that requires intention and muscle tone.

At the right, on a lower plane, is the little woman’s right hand. Is it really a woman’s hand or that of a child? The size disparity between the two hands is striking. Does that really look like an adult’s hand? It does not to me.

The woman’s hand is limp and lacks muscle tone or even any sense of intentional movement. It is not reaching out for help or grasping at offered assistance. It is just… there. Passive. Waiting.

The man’s hand extends from the top left of the poster to the center, which it occupies. It is the focal point of the image. The woman’s hand continues the line drawn from the man’s, but disappears into the text that covers it. We see all of the man’s hand, his wrist,  and some of his sleeve. We see four of the woman’s fingers (well, three and a half); the rest of her hand is covered by text blocks. In other words, the important, central figure of the image is the man’s hand. The woman’s hand is an accessory.

Again – this poster was hanging on a corridor wall in the Breast Clinic of a local hospital. The hospital’s history might be of interest. Founded in the latter half of the 19th century, for most of its life it was a major maternity hospital. The name is from Psalms 9:10 (9:9 in some translations): “The Lord will be your refuge, a stronghold in times of trouble”. The literal translation of Misgav Ladach, which, to be fair, hardly anyone thinks of any more, is “refuge for the downtrodden”.

Come to think of it, the poster makes the point fairly well.

Another kind of cancer

This is a news photo taken at a unique demonstration held in the mixed Druze and Christian village of Ussefiya (Isfiya) in northern Israel. The placard featured in the photo reads Violence is a Cancer of Society. Other signs at the demonstration read There is no honor in crime and Your silence is approval of the crime in both Arabic and Hebrew.

The demonstration was organized by a 21-year-old Druze student, Missan Hamdan. That is the first of several unique aspects to the protest: it was organized by a young woman following the discovery of the bodies of Hakim Kayouf (25) from the village and Iham Kadour (19) from Daliat-al-Karmel, a large Druze town, also in the north of Israel. Ms. Kadour’s family is thought to have disapproved of the relationship, and the deaths are initially believed to be murder-suicide. The families have not released any statements.

This is no simple Romeo and Juliet story, however. Ussefiya is known to be a particularly conservative village  and it has been witness to a growing number of violent crimes against women by male family members, many of them on the grounds of “family honor”. In an interview with the Haaretz Hebrew daily (19.09.2012), Ms. Hamdan said, “Violent events in our community are on the rise, and we feel helpless about them. I initiated and led this protest rally in front of the Ussefiya council building; the demonstration’s goal is to say ‘no more violence’ and to bring an end to the tacit condoning of such things.”

Don’t rush to conclude that this is a sectarian issue. Just this week a horrifying story came to light. In 1991 a Jewish man, whose name was not released, murdered his wife. He was convicted and sentenced to fourteen years in prison. The prison system, however, deemed him too mentally ill to be held in prison so he served his full sentence in a psychiatric hospital. After his release in 2004, a woman complained that he was threatening her and he served a brief prison sentence. In 2005 this man remarried and in 2008 his wife gave birth to a daughter. This week he stabbed his second wife to death in the presence of the little girl. He is presently undergoing psychiatric evaluation to determine his fitness to stand trial.

Those two cases took place within the last seven days, which is why I chose to write about them in detail. However, not a month goes by without one or two women in this country being killed by their husbands or partners, fathers or brothers. I have a request in with the Israel Police for the exact numbers, but I don’t know if I’ll receive them.

Violence is indeed a cancer in society. It grows, it spreads, it reproduces: violence begets violence. Women are particularly susceptible to victimization due to both traditional roles and the simple fact of being, as a rule, smaller than than men and not as strong. Violence against women is somehow not perceived as being as grave as violence against men, though this is rarely if ever articulated. Fourteen years is a laughably light sentence for murder but not unusual in domestic crimes.

In the US it used to be common (and may, sadly, become common again) for women who had been raped to be accused of somehow causing the rape. Women who are victims of domestic violence face the same sort of revictimization: Why didn’t she leave? How could she let him do that? Women who are murdered by their husbands or fathers are sometimes regarded in the same way. I have even heard from a reliable eye witness about a priest who said that yes, the father should not have killed his daughter, but if she hadn’t been dating a boy the father didn’t like the whole issue wouldn’t have come up.

Taking my cue from one of the signs in Ussefiya, I decided to write this post. I do not approve. I am not indifferent. I will not be silent.

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Information in this post is taken from the Israeli press and from private conversations with Palestinian women in Ussefiya and Jerusalem.

How Red Tape Made Me Grateful

Before I get to my main point, I’d just like to point out in disgust that virtually all the images that showed up when I searched for red tape women were of naked  women who had indigestion (or perhaps what the photographer imagined was a sexy pout) and were wrapped up with red ribbon in some kind of soft porn bondage pose. Others showed women with red tape across their mouths or tied around their (sometimes pregnant) bellies with a big presentation bow. 

I don’t intend to do a feminist deconstruction of the phenomenon; I just wanted to point out that I am appalled. These images reinforce the idea that women do not deal with the realities of day-to-day life in  21st century industrialized countries, that they are passive and that they are objects to be given as gifts. I am seriously annoyed.

Right. Enough of that.

Yet again I am faced with the problem of getting more CT scans. It is a problem because 1) the “sick fund” (the Israeli version of a health maintenance organization) to which I belong only works with one imaging center. 2) That imaging center will not accept patients who are allergic to iodine, whether or not their own physician does the prep and whether or not the test requires iodine. 3) I am allergic to iodine.

Now, I know that I could get the sick fund to send me to the imaging center that will accept me. But I also know that this would take time and would involve a lot of emails and faxes and phone calls and meetings and calmly-and-patiently-yet-firmly insisting on my rights… and, quite frankly, I don’t have the energy for all that. So I’ve decided to just pay for it out of my pocket.

How does this make me grateful?

• The chest-abdomen-pelvis CT will cost the same as the head CT alone, and that price is much lower than you would see in the US, for example. It will cost me the equivalent of around USD 120. I am grateful we have affordable medical care.
• I have the money to spend.
• I have the ability to negotiate the red tape bedecked halls of the sick fund administration, and I also have the freedom to decide whether or not to do so.
• Not only do I have the freedom to decide, but I have the ability to make the decision. I am not paralyzed by anxiety and stress.

All in all, I am grateful today.

Late news – Arrangements are all made; I’ll have the scans Monday afternoon (in three days’ time). 🙂