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Archive for July 21st, 2010

The R-Word

I was at a little gathering recently. Some food, some drink, and early-evening gossip – not exactly the environment for fireworks or teary politics. And yet, even before the trickle of wine had morphed into a hedonistic gush, and bottles of spirits were dug out of cupboards to help along those heading towards delicious bitching, one of the guests had driven away in tears, while another paced outside, chewing through cigarettes and trying to coax her blood pressure down. What had happened to cause such an catastrophe? Simple; someone had used the “R” Analogy.

Kristen Stewart and Martin Cullen don’t generally have all that much in common (apart from his surname matching her on-screen boyfriend’s whilst rhyming with her face), yet both recently found themselves wincing apologies after likening intrusion into their private lives to being raped. Mindlessly comparing an occupational hazard to a serious crime was, naturally, seen as being extremely offensive to real victims; Stewart’s reference stung because of her rich, privileged status, Cullen’s because he’s a man in a position of influence and power. At the party the other night, our perpetrator spoke of how she’d discovered that a person she thought had loved her had lied to her, in the most heinous way, over and over again, essentially creating a version of himself so far from reality that she had fallen for a man who didn’t really exist. The truth was devastating. She felt worthless, stupid; she had wasted a year of her life on a charlatan. In her confessional state, she let slip that it felt like she’d been raped. The other guest, who had been raped in her teens and has always been honest and open about how she continues to struggle to come to terms with it, was sorely offended.

Her short, angry burst can be summed up thusly: don’t ever use the R-Word to describe anything but the R-Word. You cannot imagine it unless you’ve been through it.

The first guest, chastised and mortified, fled the gathering.

Now. There’s never going to be a place or time when I feel it’s right to wonder aloud how this rape victim or that rape victim feels about the crime committed against him or her. People deal with trauma differently. The aftermath of an assault of a sexual nature is an even trickier minefield for the victim to navigate – everyone knows you just don’t see as much victim-blaming with any other kind of serious, personal crime – which is all the more reason to accept that there is no “norm” here, no tried-and-tested rule for Getting Over It that we can package into a handy guidebook and give out at the Rape Crisis Centre. Some people loathe the term “victim”. Some sneer at the alternative “survivor”. Some refuse to be ashamed. Many, and here’s the kicker, feel such deep shame and fear that they never recount their experience, ever. To anyone. It’s a terrible truth that victim-blaming can apply in the victim’s own head, as well.

Which is where my problem lies with bashing those who dare to use the R Analogy. Yes, it’s an extremely insensitive metaphor to pull out of the ether when you’re feeling lazy and indignant. And it is worrying that likening every personal trauma to rape could normalise something which should never be normal. But who’s to say that celebrities who cry rape-a-like know nothing of rape? Who’s to say that the girl who fled our party had no idea what she was alluding to? Rape is, unfortunately, not rare. There are many people in your social circle who could, no doubt, offer qualified opinions on the matter – quite possibly, a few more than you might expect. People will use the R-word. Some of them might even know what they’re talking about. Is there any real advantage to reacting abrasively?

My friend was certainly well within her rights to feel indignant. I’ve always admired how audacious she can be when recounting her experience; as upsetting as it is for her, she’ll talk it out, she’ll “go there” if it needs to be said. But I wonder too, how would she have reacted had the other girl turned around and told her, “Yes, I do know what it’s like…”

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Recently I gobbled up The Journal of Dora Damage

The Journal of Dora Damagenot a perfect book, but a rattling good read: horrible, absorbing and funny. It centres on the craft of bookbinding: the selection and preparation of materials, the lining up of letters, the tooling, the stretching and stitching, the satisfaction of production. I knew nothing of the book, nor its author, having bought in a rare purchasing response to Amazon pointing out officiously that Other People Bought This One Too, and was shocked to read that Belinda Starling, whose first novel it was, died a few years ago at the age of 34, following complications after what sounded like an ordinary enough surgical procedure. She knew, before she died, that Bloomsbury were going to publish her book, but she didn’t live to see it printed and bound. What cruelty.

The technical detail in the book brought back to me the weekend my father taught my sister and me how to make books, using a couple of prepared goat-hides of a similar blue to Dora Damage’s dust-jacket. He was the sort of man who would pull out a roll of blue goatskin from behind the hatstand as if it were as usual as a box of teabags. Like Dora, our first experiments were notebooks and albums, with home-marbled endpapers, but we glued the spines with Evo-Stik wood glue which was such powerful stuff that a small jotter would spring closed with the force of a released bulldog clip. The point of the lesson, if memory serves, was that my sister and I would be able to mend some old books for him, lining up strips of muslin over a torn endpaper, or taking a curved needle to a disintegrating quarto, but my workmanship must have been shoddy, because I can’t say I can remember being trusted to drip wood glue onto the Biblia Sacra or the copy of Master Humphrey’s Clock whose attraction baffled me.

I do enjoy books as objects, though, and appreciate their making. I still like old books, small ones, the softness of pages cut apart with a letter opener, the tender weight of a calf binding lying spine-down in your palm, the study smell, the tease of tissue paper over a frontispiece. Though books interest me, their insides and their outsides, I’m not a proper book-collector, tracing rare first editions, completing sets, stalking writers at signings, or any of that. (Well, I have stalked one or two.) Back in the days of the Irish pound, I paid four of them for a dullish-looking copy of Madame Bovary which I found in the basement of Cathach Books in Duke Street in Dublin. I liked Flaubert, and it was printed in French, which I suppose I thought I would read. Not leather-bound, certainly not a first edition, but hardbacked and illustrated, you couldn’t say fairer than four quid, and it was probably the only thing for four quid in Cathach Books that day. Now, books and puppies don’t mix, and so ultimately, sadly, the spine got ripped off in a playful frenzy one day, but as I checked it over for other damage, I noticed – incredibly, for the first time – two names inscribed on the fly leaf.

Lennox Robinson
Paris October 3 1921

JL Synge
11 April 1960

Lennox Robinson? Did I buy (and nearly allow to be destroyed) a book of his without even noticing it? I have to look up JL Synge.  John Lighton Synge was a nephew of John Millington Synge, a mathematician and physicist, with a daughter called Margaret who was known as Pegeen. Was it his book? Might have been. Is that really Lennox Robinson’s writing? I don’t know – I haven’t been able to find another sample. But the idea that Lennox Robinson might have held the book, might have sat in Paris, warming with his hands the very spine my dog tore off, working through sentence structures as I did (oops, I didn’t actually do that), gives the tattered old book more texture and interest than a calfskin binding could. And it’s the same even if the people who have held the books before weren’t members of the Abbey lot. My grandmother’s, then my mother’s batter-spattered copy of Good Housekeeping Picture Cake Making, my sister’s lurid goatskin notebook bound too tight to open, the Penguin first editions, singly sought, then placed into row upon row by my father. The book your wife wrote, but never held.

This is not a new idea, nor especially profound, but there’s a lot to be said for noticing and remembering the book as object, as well as the words that make it sing. You must have treasures, too.

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Take a minute to look at the photo of this woman. An image you think you’ve seen before somewhere but can’t quite place where, perhaps? Smiling and open, she appears ordinarily attractive, which she was.

Would it surprise you to know that this woman is single-handedly responsible for many of the most important life saving advances in medical history – from the polio vaccine to chemotherapy, in vitro fertilisation to gene mapping – that she died before her 32nd birthday and she was completely unaware of the role she would take in medical history?

Henrietta Lacks (1920 – 1951) is the source of the ‘HeLa’ cell line, used the world over for medical experimentation by scientists from undergraduates to pioneering medical researchers. The sample was taken without her knowledge during a medical examination when she was diagnosed with the cervical cancer that would kill her within eight months. As a student I like many others used her cells without any idea of her story, the history of biological samples used for research or the huge ethical and financial debate they started.

‘HeLa’ is often described as one of the world’s few ‘immortal’ cell lines, simply meaning that given the right temperature and the right nutrients the cells will continue to duplicate and grow indefinitely making them easy to culture. In this in vitro environment cells can be used to test drugs and therapies and are vitally important in studying human cell pharmakinetics. Quite why Henrietta’s cancer cells were so virulent is still not completely clear but one of the known culprits is certainly the Human Pampilloma Virus 18 with which she became infected at some point, turning off a tumour suppressor in her genes.

I first heard of Henrietta Lacks and her cells via a family friend who was working for a pharmaceutical company. He asked if I knew of the controversy surrounding the source of the cell line, not knowing a lot about it himself just that they had been taken from a woman somewhere in America without either her knowledge or consent. Earlier this year I came across ‘The Immortal Life of Henrietta Lacks’ by Rebecca Skloot, which looks set to become the definitive account of the story behind the cells.

 Skloot describes in compassionate detail the history of the Lacks family, follows Henrietta’s disease progression through those 8 pain-filled months and explores the impact of her death and the apparent disregard of the scientific community for the feelings and rights of her surviving family members. The callousness and arrogance expressed by some of the researchers at the time is shocking even if it came not from any malice toward her but more the backdrop of medical secrecy that was very much prevalent at the time. 

Having passed a misspent year or two working for a clinical trial company I am familiar with the inflexibility of legislation relating to side effect reporting. I knew next to nothing about the current rights a human has over their own biological waste – which prove to be next to none. For example, undergo a tonsillectomy and there’s no law preventing the hospital from storing the ‘waste’ tissue for some potential use.

The story of Henrietta is undeniably complex and heartbreaking: there are interweaving issues of race (Henrietta was treated at a ‘coloured’s hospital’), gender and of medical ethics. Biological ethics, the Nuremberg code, the birth of informed consent and open disclosure were all yet to happen although perhaps it should be noted that the man who took that original sample of her tumour never profited financially himself from the incredible capacity of her cells.

The complete lack of information her family received – it was 20 years before they even heard about HeLa cells – and the agonising horror and fear they subsequently went though could so easily have been prevented if only someone in authority had taken the time to properly explain the situation.

After attempting to weigh up all the arguments, trying to find the truth within the story and among all the momentous occurrences both positive and negative that came to pass, the residual feeling I’m left with is a wonder at how often the worth of ordinary people is overlooked. She was an insignificant, uneducated woman treated by an ordinary doctor yet the disease which took her life resulted in extraordinary benefits to humankind both medically and ethically.

Henrietta Lacks; reluctant medical mahtama

 

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