An Open Letter to Lindy West

Dear Lindy,

I would like to respond to your Jezebel article ‘Melissa Etheridge Calls Angelina Jolie’s Mastectomy a ‘Fearful Choice’. (link provided below) At the end of your piece you ask ‘if anyone can figure out a charitable interpretation of [Etheridge’s statements], could you let me know?’

I would like to try.

Etheridge’s comments did not strike me as incomprehensible or insensitive. Angelina Jolie is a public figure who not only knowingly made a public disclosure, but has been widely received (and put herself forward in her original NY Times article) as an edifying and inspirational subject. As a breast cancer patient myself, I can tell you that I entirely take Etheridge’s point.  While Jolie is entitled to make whatever medical decisions she feels are right for her, what those choices might be taken to signify for the rest of us should not be regarded as sacrosanct. Etheridge was not casting aspersions on Jolie’s intelligence or fortitude, or attempting to make light of Jolie’s ordeal. Rather her commentary offered an implicit critique of the moral capital that Jolie’s response to her genetic diagnosis has garnered. Jolie’s decision was at the least a disquieting one. It does not and should not provide an exemplar on which we should all model our responses to personal genetic diagnostic information (or for that matter to any of the clinical practices associated with genetics). As Etheridge suggests and as reality bears out, genes are not destiny.  A diagnosis of BRCA 1 or 2 mutationdoes not guarantee that one will go on to get breast or ovarian cancer (nor in those who do get cancer, does it mean that it was a BRCA related one). And by sad corollary, a person could undergo a prophylactic double mastectomy and still get breast cancer. As Konnikova noted in her May 15 Salon article, the risk statistics associated with single gene ‘flaws’ refer to population patterns, not individuals. In my own case, with no family history of breast or ovarian cancer, my statistical risk, based on population patterns, was among the lowest.  In the frame of my particular life however, the risk was 100%.

In any case, how we deal with risk or fear of risk is not a straight-forward proposition. Etheridge’s states her belief that cancer has a holistic etiology – that is, she believes that the causes of cancer are complex and related to the whole organism and context. Your comment suggests either that this is a ridiculous belief or that it is a useless one because it doesn’t suggest any sort of definitive action except airy-fairy quackery.  While it is true that Etheridge may not have provided the most persuasive examples of what one might mean by that, and her understanding may or may not have been informed by emergent epigenetic and microbiomic turns in genetics, nevertheless a holistic understanding is certainly supported by these scientific developments. Epigenetics is the study of the complex factors that shape the expression of genes. Microbiomics is the study of the collective genomes of microbes — 90% of the human body, for example, is composed of microbes. Together these scientific turns cast considerable doubt on the validity and utility of single-gene led understandings of disease (especially complex conditions like cancer, which is not in any case a single disease) or single-gene frameworks for clinical practice. I would go further than Etheridge. It is my belief that our current paradigm entirely misunderstands cancer. I believe cancer is not only a normal part of living bodies (our body composition at all times includes cancer cells), but that cancer may turn out to be at the very heart of what constitutes being biologically alive. The notion that what produces life also produces disease or death is demonstrated in myriad contexts, including in the constellation of organisms that constitute human bodies, and which are not the outgrowth of ‘human genes’. When in balance, this human microbiome is part of what keeps us alive and healthy; out of balance and those necessary microbes can become infections that can harm or kill us. And of course – life always and ultimately does produce death – since all of us die. Does my belief translate into definitive or effective preventive action? No, I don’t think it does. But sadly, neither does Jolie’s. Jolie’s preventive double mastectomy has been framed (and she herself framed it that way) as a zero-sum choice —  that is, as a trade off of the loss of her breasts for the gain of her health. But there can be no such contract because cancer is a not a terrain of certainties. Is that not at least worthy of some disquiet? And perhaps some unquiet critical reflection?

Etheridge also believes that Jolie’s decision is not a ‘brave’ (as in brave-in-quotes-and-italics) choice and she explains why. I agree.  It is a dangerous thing to interpret someone’s personal bravery (and I am not sure that ‘bravery’ is the right term for this situation) as an ideal type, or as a transaction that places their beliefs or actions categorically beyond critical evaluation.  While Jolie has braved much, I do not see the choice of preventive double mastectomy as therefore and thereby not an act of fear, or therefore and thereby not an excessive or misguided response. Like Etheridge, I believe Jolie’s choice is not an example at all for the rest of us. This is not simply for the reasons I outline above (and that Etheridge alludes to in the comments you quote). Many commentators have also pointed out that Jolie’s personal wealth insulates her entirely from the gross inequities of health care that constrain the choices, availability and quality of care available to most Americans. Most American women could not afford or have access to Jolie’s medical and cosmetic resources. Jolie herself noted this in her article and indeed, this issue informed the Supreme Court decision in Myriad to ban patents on natural genetic products, including BRCA genes.  But perhaps more perniciously, Jolie’s fetishised capital as ‘the most beautiful woman in the world’ is in my view no small part of her perceived bravery in this context. Had Jolie decided to have a double oophorectomy (which would have made as much sense according to the rational calculus of the choice she did make), I doubt that this would have been news. I suspect that it was specifically her willingness to sacrifice her breasts – (and then to have them almost perfectly reconstructed) that draws the applauditory gaze and adds the aura of unimpeachable moral capital to the excessive capital already associated with or wielded by Jolie.

I am concerned about constructions of ‘bravery’ that foreclose on uncomfortable questions, that shut down uncomfortable conversation, that rule out uncomfortable standpoints, that cast to the sidelines, uncomfortable people. My questions are uncomfortable to me as well (as I suspect Etheridge’s were to her). I find it deeply uncomfortable to express doubt over the intimate medical decisions of another person, even as I am deeply uncomfortable by the rationalisation of those decisions because she is both a public figure and a vulnerable person. This is only one of the painful irreconcilables of Jolie’s story for me. I think this may have been the point Etheridge was trying to make.

Yours sincerely, Deborah Lynn Steinberg.

References/links

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