BARBELITH underground
 

Subcultural engagement for the 21st Century...
Barbelith is a new kind of community (find out more)...
You can login or register.


Underground > Conversation >

Smile for the Surgeon

  
 
Twice
19:33 / 29.05.07
[I’ve put this in convo as a start because (obviously I’d like to go somewhere) I don’t really know where it might go. There’s a nod to this thread, which I don’t think really got off the ground. I haven’t bumped it because…well…because I didn’t like the cut of its jib. This might well belong in film, tv, theatre, or elsewhere.]

The subject of organ transplantation is one which has obvious interest to me. I’m a renal transplant recipient, and got my lovely organ in 2000 after some time on dialysis. Endemol, the company behind Deal or No Deal (and others, yep) has devised a program which is to be transmitted by the Dutch public service channel BNN.
BNN has a reputation for risqué productions, it seems. There has been some fuss and bother, but the show will be aired.

The show’s concept is that a terminally ill patient (37 years old, cancer, female) will be choosing, through interviews with the applicants and their families, which dialysing contestant will get one of her kidneys (note plural) when she dies. The companies responsible for this program have been trying to justify it’s premise by claiming that the show will highlight the desperate need for donor organs in the Netherlands (and elsewhere). The Dutch parliament has debated the issue, but the show will go on.

I am already aware that a proportion of transplant patients of all varieties are somewhat supportive of this program, despite possibly cynical motives of its producers. I have no evidence, but I can only assume that the rest of the donor’s organs will be used appropriately. That’s a lot of useful offal.

Donation (in Britain) is in an odd state. Vast numbers of healthy people would, if asked, offer up their organs in the event that they die unexpectedly, yet a tiny minority have taken the trouble to register their interest. Living related (and now unrelated) donorship is growing slowly, but (and I generalise) in Scandinavia, there are almost no waiting lists for kidneys because living related donation is considered normal and proper. In Britain, around seven thousand people are currently waiting for a kidney. In 2000, it was 5,500. In Holland, the story is even worse.

It’s over six years since my transplant, and I have an intense relationship with my donor. He died on the 20th December, and fourteen hours later I had one of his kidneys. Other people had his heart, lungs, liver, pancreas and his other kidney, and his eye-bits and bits of bone and heart valves and tendons. When I woke up, I had ownership of my kidney. It wasn’t his, it is mine. He gave it to me. I think of him every single day. He is the closest I have to a deity. I bless him and worship him, just a little bit.

This has already gone in a direction I hadn’t expected. The television show is a nasty thing, but I do believe that it can serve a purpose. I wonder, though, whether TV is a suitable medium for a terminally ill patient to give herself what seems, to the applicants, the power of life. I don't think it's 'tasteless' at all, but I am a little afraid that its powerful message will be lost in the wave of disgust and fear that accompanies it.
 
 
miss wonderstarr
20:43 / 29.05.07
I'm a renal patient not so far down the line as you (ie. my own kidneys still deteriorating) and I couldn't really bring myself to read the new stories about this show. I find it difficult to read stories about kidney transplants and dialysis as they always have some sense to me of being written from the "outside", from a subject position that doesn't actually have to deal with kidney disease ~ to the authors and most of the readers, I always feel renal disease, transplantation and dialysis are something ... objective, something that could potentially be bizarre or funny. Whereas to me, it's something that makes me feel my organs are straining and aching against the inside of my torso almost every day, and is only ever really going to lead me to greater hassle, pain, inconvenience, indignity and general unhappiness.

I feel the discourse about this show, from what little I've read, is from a position outside the experience of renal patients, and I do feel some sense of "they can't understand, so they really shouldn't comment." I find myself getting annoyed when such things seem to be fodder for light-hearted or even objective discussion, because to me it's not at all objective.

So, unfortunately my response here is along the not-usually-acceptable lines of "I've not read it, but I don't like it!" ~ however, I hope I can be excused that.

If it does improve the position of renal patients, great, but I expect it will have as much positive effect in that respect as Big Brother did in challenging racism and homophobia: ie. debatable, quite possibly negligible .
 
 
Sibelian 2.0
12:26 / 30.05.07
I really think this is pretty dreadful but it's probably worth noting that I've done secretarial work for a transplant unit before and am still working alongside a bunch of transplant coordinators. I share an office with their secretary.

I think this is an absolutely ghastly idea. A brand new implicit assumption is being almost invisibly attached to the clinical course of potential transplant recipients, that there may be qualities in them other than their clinical viability for transplantation that will lead to actual transplantion. Let's not beat around the bush, "clinical viability" can cover quite a lot of ground, some of it based on lifestyle, liver transplant surgeons sweat buckets over whether or not to perform transplants on alcoholics whose livers have packed in because a lot of the time they don't give up the alcohol and end up destroying the transplanted organ as well as their original one.

So what criteria is this terminally ill patient going to judge her "applicants" by? How can any of these criteria begin to compare to the criteria taken into consideration by highly trained and experienced professionals? Is it merely the fact that she's terminally ill that legitimises her decision, whatever it may be?

Even setting up this situation will attach the status of "deserving" and "undeserving" to the successful and unsuccessful contestants respectively, albeit as a subtext.

I could be being a bit gung-ho and pro-doctor here, Ive been lambasted for that on other boards elsewhere, but there's a big problem with perceptions of the medical establishment and I don't it's going to be well understood by the average viewer how serious an undertaking a transplant is. Consent documentation for donors is extraordinarily complex and involved precisely because the issues are so sensitive, it must be established that they understand the procedure, it must be demonstrated to the appropriate clinical practitioner that no coercion or duress has been brought to bear on them... it's not exactly an interior decoration job. And this programme is going to simply throw away all that and essentially *encourage* a kind of coercion!

I think the potential for abuse is staggeringly huge and is traded against a vague notion that people will be encouraged to register as donors, which presumption I have massive problems with anyway, what's the big idea, that everyone will feel sorry for the "failed" applicants and then go and sign up? Will they hell! I'm willing to bet several of my own organs that they'll post screeds of inflammatory rhetoric on Internet message boards about who THEY think should get the organ and that's it!

Medical decisions should be taken by medical professionals. It's their job to do so, they are trained to do so, they are confronted with the necessity to do so on a daily basis and understand the issues.

I don't think this programme has anything to do with encouraging registration for donor status, I think it's entirely about plumbing the vast, stygian depths of the TV-viewing public's relatively recently discovered and as yet seemingly inexhaustible desire for public humiliation, perpetuating the comfy-sofa-as-a-court-room syndrome which currently plagues popular culture.

Will this descend eventually into people *voting* for their favourite recipient via text message? Will organ transplants become a popularity contest?

Every time I think these television people have sunk to new low (the last time I thought they'd hit rock bottom was the RTV in the States featuring a child for adoption as the prize between three competing potential adoptive families - "Guess what, Junior, we won you in a game show! You're our miracle GAMESHOW prize baby!") I am proved horribly wrong.

I should really just give up thinking it.
 
 
Twice
19:16 / 30.05.07
I agree that the situation could be seen as coercive, if only because transplant lists are traditionally out of the control of external influence. My suspicion, though, is that this concept is seen as being ‘in poor taste’ firstly because it deals with death and illness, subjects which I understand that others back away from, and also because it sets up the idea of vital organs being commodities. The currency is presented as altruism, but it actually has a value which feeds egoism. The donor will choose the candidate who seems to offer her most personal satisfaction in return for her gift. It may be that the donor is not yet aware of the difficulties she will face when she has to come to a decision.

I don't think this programme has anything to do with encouraging registration for donor status, I think it's entirely about plumbing the vast, stygian depths of the TV-viewing public's relatively recently discovered and as yet seemingly inexhaustible desire for public humiliation, perpetuating the comfy-sofa-as-a-court-room syndrome which currently plagues popular culture.

I think you are right. However, I do wander whether the reaction of audiences will be sympathetic to the aims of the producers. From my own experience, this subject fascinates people for about 10 seconds. Both before and after transplant, I would meet people and very often, on finding out my condition, their response would be “Wow! You’re going to have/have had a transplant! That’s great!” But then, a look might come into their eyes and, I think because the subject is cloaked in the taboo of death, it’s never mentioned again. I don't think the subject itself will hold the attention of the audience, but the show wil concentrate on the decision. I wonder if it might throw up some interesting and valuable questions.

No, I don’t expect people to be rushing to sign up to the donor register*. As someone who is keen to have discussions about this subject, I get a little frustrated with (what I see as) disinterest and fear. I find myself drawn to the program because a part on me wants to shake the subject in peoples’ faces and make them listen. I think, perhaps, that from my point of view the ‘depths to which the program makers have sunk’ are less profound than the situation where the desire for an organ might drive one to appear on such a program.

With regards to coercion, yes, that exists anyway. I once had a horrible screaming match with a (then) very good friend who very seriously wanted me to buy a kidney in India. Some time after my operation, I asked her if she was registered. She blushed and looked away, and said nothing.

*Sorry. Too tempting.
 
 
Sibelian 2.0
20:11 / 30.05.07
I think, perhaps, that from my point of view the ‘depths to which the program makers have sunk’ are less profound than the situation where the desire for an organ might drive one to appear on such a program.

Hm.

I think I can see where you're coming from but we might compare the situations in terms of that depth with respect to the show as a context. All that's being created by the show is the certainty that two transplantation candidates will be publically humiliated BECAUSE they have been passed over for transplantation in favour of a third candidate who was artificially set up in competition with them. The show does not in fact provide new organs, which is what transplant surgery desperately needs, all it does is put "entertainment" brackets around a subset of patients in need of a transplant. In terms of alleviating the suffering of all interested parties, the show's overall effect is merely detrimental, in the show's absence the terminally ill patient donating only one organ would still only be able to donate to one recipient. The appalling situation faced by the two remaining candidates is made worse by the fact that their plight is now publically known and "useful" as entertainment.

That the candidates are motivated to appear on the show is an indictment of the state of transplant surgery in the Netherlands, but this indictment does not, in my view, legitimise the mechanism of the show. The show doesn't fix the problem. It just films it and broadcasts it with the attachment, possibly, of bullshit, shadowy, smuggled-in cognition around who "should" or "shouldn't" get a transplant.

But hey, I said all that, and, um, am I misreading you, TFT? I get that at least the issue will be brought into the public eye, and that this can't really be seen as *entirely* negative. Even if discussion of it here gets people on Barbelith to register, then it's done some good.

With regards to coercion, yes, that exists anyway. I once had a horrible screaming match with a (then) very good friend who very seriously wanted me to buy a kidney in India.

I bet a lot more of this exact sort of mixed-up crap that your friend hit you with is (mostly) what will come out of this show. I think it's highly likely to make the situation worse not better. But that's an entirely subjective evaluation based on my experiences with people who watch reality TV (there's a sort of different wavelength that RTV participants seem to live on that RTV lovers "get" and I *don't*, generally hovering around "if they've gone on telly they've sort of lost the right to privacy cos they're famous but they're not proper celebrities so they don't even get the benefits of being "better" than us"). I could be wrong, but I don't think RTV is a good way of getting people to think about things.

Have I understood you? I'm assuming you're neither entirely for nor against the show in principle?
 
 
Twice
20:36 / 30.05.07
Have I understood you? I'm assuming you're neither entirely for nor against the show in principle?

Yeah, I guess. I think I'm trying to say that I suspect that most people who are uneasy about the show are uneasy not because of the issues you highlighted (which are entirely right) but by the fact that the subject matter is just too eeewwwww for them to deal with. I might also mention my irritation that the donor is terminally ill, like...it doesn't really matter, because she's going to die anyway so, like, no harm done...OK? But yes, I'd rather that than silence.
 
 
Sibelian 2.0
20:42 / 30.05.07
I might also mention my irritation that the donor is terminally ill, like...it doesn't really matter, because she's going to die anyway so, like, no harm done...OK?

I was so busy fuming at dimensions 1 through n along which this show is a fuck-up that I didn't notice that one.

Yes. That's horrible.
 
 
Whisky Priestess
11:35 / 31.05.07
I've had a donor card for ages but keep losing wallets. So I've just signed up to be a donor - it was super easy and took about 1.5 minutes.

However, it was a bit too easy. What's to stop me entering the details (all you need is address, email, name and birthday) of various people I know and registering them as donors? You get a confirmation email but you don't have to click on anything to complete registration - they only have a link to take you off the register or amend your details.

So if the confirmation email goes to someone's junk folder or an address they seldom use and they miss it, they could be registered unwittingly for donation when it's against their wishes. What about people without email? Will they get a letter? Will I?

I'm all in favour of donation (obviously) but the fact that this appears to be possible (registering people without their knowledge) is a fucking scandal. I might email the NHS about it actually.
 
 
Twice
13:47 / 31.05.07
WP, the most inmportant thing to do is to tell family and loved ones what you have done. The register was originally set up because some families cast doubts on whether their relatives had ever 'carried a card', when medical teams prepared to remove donor tissue. Even after using the online register, it is importnat that people know your intentions, as familes retain the power to veto your decision after your death. Experience has shown that if hospitals a)can show that registration happened and b)the donor has told the family previously, the chances of the donation being refused after death are much smaller.
 
 
Mistoffelees
07:10 / 02.06.07
So have you heard yet that it was a setup? The donor wasn´t a donor at all and she is not terminally ill. She is an actress. link
 
 
Twice
07:44 / 02.06.07
Meh. And a tumour called Lisa.
 
 
Sibelian 2.0
08:56 / 02.06.07
Right.

So. My first instinct is now to post screeds if inflammatory rhetoric about how the Interflop will be squashed full of inflammatory rhetoric about whether or not this show was a good idea.

But it does occur to me that it's kind of up to the targets of the prank whether or not it's a good idea. The targets are the non registered viable donors, and if they *do* decide to go and register through having been made a bit aware of the issues... then it's kind of worked, however tasteless and squishy it is, and they *turn* it into a good idea.

Victory might be snatched here from the jaws of squick.

It's exploitative and disgusting, actually, and somewhat typical of that TV company, but they may actually have brought about some action on an issue. Which *might* just give me pause before pointing out that this will neatly and cleverly eclipse their Big Brother racism troubles.
 
  
Add Your Reply