Feast of Losses by David Plummer
Feast of Losses, is an ongoing project that documents the life of David Pembroke, who in 2003 was diagnosed with Progressive Supranuclear Palsy, a rare brain disease that causes nerve endings at the base of the brain to gradually die. These neurons mainly control movement and balance, vision and speech and the ability to swallow. There is no effective treatment or cure and like other neurodegenerative diseases, PSP gets worse over time.
Website: David Plummer
ok, so we go from warm and fuzzy and feel all good inside Harlem jazz to Supranuclear Palsy. Whoa..time to catch my breath, blink a few times, swallow hard and switch horses..first thing to do is google this disease, try to get a basic understanding of what’s happening to this man. aha..one symptom is a “mask-like facial expression (no expression)” that explains your subject’s, well, mask-like expression. How chilling to see the physical manifestation of this symptom. Another symptom, maybe the scariest for an artist or photographer besides all the other really scary symptoms and prognosis of PSP is that ultimately ALL voluntary eye movements may be lost. Which sort of reminds me of the Julian Schnabel movie, “The Diving Bell and the Butterfly” (incredible movie, i totally recommend it). The bottom line, a miserable malady you wouldn’t wish on your worst enemy.
So i go back to the diptych with a new understanding. David…i can barely imagine a more frightening prospect than when your subject, also David, heard and understood the impact of the diagnosis of this awful disease. Terror, hopelessness, despair. I can’t imagine too many things that would be worse since he knew he would inevitably suffer loss of mobility, balance and ability to control bodily functions, not to mention depression, severe personality changes and, yikes, dementia. I am moved with the deepest compassion for David and know there isn’t much to be done to improve his quality of life. There was nothing he could do to prevent the onset of PSP, only so much he could do to stall its progressive nature and now, clearly, from the cuts on his face and the spilled cup on the floor next to his chair, cause and effect are in full view. Sad, sad, sad. And how very difficult for his caregivers as well.
You don’t mention how you know Mr. Pembroke. If you are a family member or friend may i extend my sympathy as you watch and are helpless to prevent his decline. If your role is strictly documentary then i admire your subject choice. How much easier to have chosen perhaps roses or trains or something. Thank you for sharing this diptych, for educating me about a disease i had never heard of and for making me care about a total stranger..
My heart goes out to Mr. Pembroke and i wish him peace and acceptance in spite of this truly tragic affliction.
best:
kat~
“Feast of Losses” certainly seems to be an appropriate title for this body of work. It makes me feel helpless…I can’t even imagine how David Pembroke must feel, or what he experiences…and I am sad that his life will conclude on this note, and there’s nothing that can be done medically to divert his dissipating state.
Just sadness for me when I view this…
Great! Where can we see more?
ok… tired as hell…
i need to sleep and “digest” those two new photos…
Lets see in the morning what the subconscious has to offer..
impressed though..
night, night y’all..
or as my greek mom used to say “nani, nani”..
Once again, Kathleen Fonseca articulates what many here feel. Thank you Kathleen and thank you to both Davids.
I too would like to know your relationship to your subject, David. How did you come to know about Mr Pembroke’s illness?
The photographs are stark and clinical. I would imagine that it would be difficult to illustrate such a terrible situation in any other way except, perhaps, without direct flash. Did you use direct flash as a technique to get your “look” or is the look just an accidental by-product of using flash?
Mike.
Man…. For me every bit what a good photograph should be. Honest, brutal…gut wrenching but yet beautiful. Both of them. Yes, both are beautiful photos. And boy how they work together in a diptych.
Years ago an attorney friend would call me occassionally to shoot photos of auto accident victims right after the accident (usually in the hospital). He wanted them lighted like this.
Unless this is a personal project for a family to remember (and why would they want this kind of memory), I can’t understand in what context these photos would be used. They provoke helplessness in the viewer more than sympathy, because there is no effective response to the plight of a man with a progressive, incurable disease.
Stopped me cold.
String of profanities.. holy f%$#& s&#t.
JIM…ALL
simple..the context in how these photographs can be used is, well..right here!!
being on BURN is being “used”…this IS being published…
i know this is a concept hard to get through your head (and mine too!) that this online bit is for real….
conservatively speaking i would say (based on my stats and what my web guru tells me) that at least 500,000 people will see David Plummer’s photographs and read his story here within 24 hours…add in all the links from other blogs, websites, hookups with Magnum etc etc. and the numbers go way way out there in the net stratosphere….by summer, whoever has work published here will be reaching over a million straight up…now, this is very small by web standards of course..this is like a small town newspaper by web standards…but , still there is an audience…a real one…a loyal one (you are here everyday)…and one that produces its own magazine…and one that does not just click and run…our sticky time (8 minute average) is way out there even minus the “regulars”….
beyond this initial exposure, David Plummer’s work cries to be a book….i do not know David..i never heard of David before i saw this work….but, i would imagine he has a book in mind…i sure hope so…
your question will be: : “who buys this book?”……well, me for one ….your next question will be : “well, nobody gets paid to be on BURN do they?”… answer: everyone who has been published here tells me they either got an assignment from or sold prints or got an exhibit etc from their exposure here….i have put out 15k (from generous donors) so far for at least two photographers to go to work on their labor of love…i am working on more funding for more photographers as we speak……is that not “real” enough????
cheers, david
“because there is no effective response to the plight of a man with a progressive, incurable disease.”
Yes there is. It is called compassion. And last i knew, that was still on the list of valid reactions to a photograph. One thing i did not feel when viewing this photo was helplessness. And i spent upwards of 45 minutes studying, thinking and feeling it. Certainly more than enough time to feel what you see as the only reaction one would/could have to this photo. Go figure, huh? Maybe i’m just really weird, but my heart grew and expanded to include a man who doesn’t even seem part of this world still. I felt for him, his caregivers and even the photographer. I became part of his extended family simply because i empathized and cared. Well, if this photograph is invalid because i had this experience well in the immortal words of Homer Banks, Carl Hampton and Raymond Jackson and performed by just about every R&B singer from the beginning of time:
“If loving you is wrong, I don’t wanna be right..”
*softly*, David, more please..*softer still*…yes, more..
best
kat
Mike R.. thanks…isn’t the flash great? I think it must be a very, very smart photographer who keeps his emotional distance in a situation like this. That David chose not to manipulate the viewer’s emotional reaction with lighting, composition and technique is one of the greatest strengths of this diptych, imo. We are free to have a very personal experience with this photograph and feel any number of things, if anything at all. Way to go David!
kat~
I think the photographs are really powerful in conveying desperation and hopelessness. I’d love to see a series, this might convey the gradual process of this disease. Also, I’m curious to see signs of David’s previous life, who was this man before the disease? Who takes care of him now? I’m left with so many questions (I’m sure I am meant to be!) Powerful work though. Is the goal to gather funding for research? I must agree with Jim in that this photo evokes a lot of helplessness and not as much sympathy maybe due to the harsh lighting and caption.
RAW.. this is terrifying.. i feel all the compassion and as KAT says so well.. it´s compassion for all involved..
it´s utterly terrifying as well.. that just a handful of years can effect our fragility so.. something we all know inside and something it never does any harm to remind us about.
But what good is your compassion for this man? Does nothing for him. Benefits him in no way. Why put him on display? “Look at this man, he is dying horribly and in pieces and there is nothing you or anyone can do about it.” So it will make a great book, huh? To what end. To satisfy some kind of perverse voyeurism? What is the message here? But for the grace of god go you?
Just seems exploitive to me without any redeeming value.
isn´t compassion enough to exist in and for itself? and who knows in what way this project is benefitting the subject, david?
what purpose need it serve us beyond a gentle nod of understanding and to initiate an extra tight cuddle for the ones we love tonight.. who knows.. perhaps the david in the photograph is not so numb to the possible effects of his portrait appearing here.
the david in the photo has given the blessing for the david taking the photo to record and display the situation he finds himself in jim – and in doing so says a great deal about his own dignity and ability to look after himself with regard to davids photographic project..
his action in allowing the photographer says to me that he himself does not feel exploited.. so why do we need you to fight the subjects corner? i mean.. how much in the photographic world is produced by snappers who look outside of themselves which could be labeled exploitative in one manor or another?
a whole bunch..
and how many projects are initiated on recording this outside world without the relationship between the subject and the photographer here… he is staring us blank in the face..
if the simple result of this being posted here is to make us feel compassion, hug our lovers more tightly and feel grateful.. perhaps.. yes.. grateful.. then surely that is a grand purpose and a compliment to davids strength in allowing his situation to be documented.
d
JIM…
your point is well taken…and is in fact always a topic of discussion at photojournalism seminars..but, if your philosophy were the case, then wouldn’t we be throwing out a whole body of photography that shows the human condition??…and the human condition is not always a pretty picture…my feeling after looking at all of David Plummer’s work is that he cares…he has befriended this dying man which goes way beyond the work of some photographers who could in fact be accused (rightly or wrongly) of exploitation..all of us are quite aware i think of the dangers of pure exploitation…i do not see that in this case…i see it more in nature of “awareness” and compassion….maybe a good book on this subject leads someone to make a nice contribution to whatever fund is set up to study this disease..will it wipe out the disease? no, of course not…but, isn’t a brick in the wall one of the things we do as photographers?? isn’t that at least better than sitting on our arse and doing nothing??
cheers, david
I sure hope so.
DAVID P
thank you for showing me something I was unaware of..hats off to both you and the David in the photos for going into this territory. of course photographing something so real / scary / horrible / sad is tricky..what I wonder is if the other David would be willing to give you some words (if he is still able) to talk about things himself..
I care…
about this man..
about this disease..
If this photo has made 1 person more educated about the disease,
if it has made 1 person feel…
anything..
it is successful, I think….
and what a powerful way to educate,
with imagery…
Has more power, for me,
than only text about the disease…
education
and
compassion
powerful…
**
I just read Jim’s comment and in some small way it resonates with my gut reaction to this painful diptych.
I don’t see what David Plummer is doing as exploitive, but I do want to ask him a question about David Pembroke’s consent to be the subject of this essay, specifically when did he agree to it? Was he in full possession of his mental faculties at that time? I’m also interested in whether or not you are also doing interviews, ie., do you plan to allow David to tell his story in his own voice. Of course, it may be that he can’t speak anymore.
As a person who lives with a progressively degenerative diagnosis myself, perhaps I see this type of essay from a rather personal perspective. And I find myself cringing when I imagine the possibility of being the subject of some photographer’s photo essay if/when things had gone badly for me. On the one hand, I can see that it might be a comfort to know that what I was living through was not happening in isolation; that I still existed in the sight of someone, even a photographer. On the other hand, this is not the legacy I would like to leave, to know I’d only be remembered as a subject of pity by young healthy viewers of an essay like this.
As photographers we walk such a fine line when we choose to document the horrors that others live, whether it be poverty, war, AIDS or Progressive Supranuclear Palsy. It is very difficult to put ourselves in their place, to operate out of true compassion rather than pity. We have to keep asking ourselves WHY we are choosing this subject, to what purpose do we do this particular work, who is it benefiting in the short and long run?
These are questions I’ve had to keep asking myself as I try to document my own life, a life that is partially informed by a 20-year diagnosis of chronic progressive multiple sclerosis. So often I’ve seen able bodied photographers turn their cameras on people like me, and all too often the results perpetuated the double-pronged stereotype of disabled folks being pitiful and/or inspiring, neither of which respects the fact that we are neither: we are simply individuals who live with a particular set of challenges that is one among the many challenges every person has to deal with. Maybe ours is just more visible than most.
So, my reaction to David Plummer’s diptych is complex. Yes, his photos are powerful, and the subject is an important one. I just wonder how it is for David Pembroke to be portrayed this way. And I wonder what this essay will accomplish in the long run.
There is one important bit of information I don’t have, though. And that is what relationship does David Plummer have to David Pembroke? For me, that is an important component. I hope he will share a bit of the story with us.
Patricia
David Bowen
well said..well said..
Jim
This is a relatively rare disease that currently affects 20,000 people in the US (i was pretty tired last night when i googled PSP so i hope i got that figure right). As such, this utterly hideous way to go into our old age probably doesn’t generate a whole lot of press, ergo, funds to find a cure and/or do a better job of alleviating the symptoms. So, Matt McInnis’ question about David’s possible goal being to attract funding for research was a good one. Wouldn’t it be great if that’s just what happened? I mean, all it takes is one member of Congress to see David’s photos and think, “Hmm..what’s this about? Can we do something?”
If we’d never seen the victims of Darfur would we have cared? Would so many of us have badgered the UN and our governments for a solution there? Or what about the victims in the Congo with their amputated limbs? (Belgium initiated that quaint practice) or the child soldiers of Sierra Leone,the Congo, Angola, Sudan, Somalia? Or, what about those teenaged Filipina mothers in Lisa Wiltse’s essay? They looked pretty helpless and pitiful to me. Yet I recall you liked that essay. So, what is the difference? Because this man is so clearly ill? Yes, he is ill with a degenerative disease. Others are in terrible straits because of society’s ills. Yet, i’d say many in both situations are victims without a cure in sight and photography might be their only hope to draw attention to their plight. And that David let the illness speak for itself without any subjective bells and whistles is so breathtakingly eloquent that i can only hope his work is seen by someone or the many someones that would be necessary to someday find a cure or a way to prevent PSP altogether.
Wow, Patricia…powerful and important words and perspective. Thank you for speaking on behalf of those living with a progressive condition…I had not fully considered how it must make David Pembroke feel to be portrayed like this…thank you for educating me… us… and making me more fully capable to comprehend work of this nature.
Patricia,
excellent and well stated points..i assumed that since David said that he is documenting the progression of this disease that he did not start at this point, i.e. when David the patient appears to have lost significant cognizant function but much earlier when the patient was capable of giving his consent to the project. But my assumption might not be correct so your points are well taken.
I think you are so brave and so philosophical about your illness but i know that it’s way, way more complex than that..times when you don’t feel brave OR philosophical but rather angry, sad, frustrated, an entire range of emotions. This post is excellent and thought-provoking..thanks
best:
kat~
Kat, may I be honest? I get tired of being called “brave.” How is it brave simply to try to live a “normal”–whatever that is–life? I am not a disabled woman who happens to take photographs; I am a photographer who just happens to be disabed. To me, bravery implies the conscious choice to put yourself in a dangerous/challenging place or position, and then to act with courage. I, for instance, never chose to be diagnosed with MS, but when it happened I simply tried to make the best of it and get on with my life.
Now maybe we’re just talking semantics here, but I think not. All too often we look at someone who is living something that we would never want to live ourselves–like what David Pembroke is living–and say that he/she is brave. To my way of thinking, folks who are given extraordinary challenges will generally do their best to live with them and not close down. Of course, some people don’t react well, but I think they are the exception not the rule.
Patricia
Hi Patricia
Yes, i see your point. And i do understand. You don’t want to seem extraordinary because of an affliction that you have no choice but to accept and you want it known that you are sucking every ounce of life and normalcy out of your everyday existance just like anybody else. And i respect that. However, am i wrong or do you seem kind of uber-stoic and a bit hard on yourself for whatever reasons? There are things i live with or that have happened to me that inspired people to think i was very brave and a host of other attributes i really don’t think i possess. Well maybe i actually felt like a total incompetent wuss but that they believed i was brave, etc. helped me to step up to the plate and do what i had to do. And that was not a bad thing. For me it was a vote of support and there’s not many of those coming at the average human being doing a better than average job at surviving (as my son says) on a rock in the middle of space. You might not like it but if someone thinks you’re brave i doubt your rejection of the word is going to change their minds. It’s a compliment like any other. But i’ve marked it down already, “careful, no bravery for Patricia”..but my thoughts on the subject shall remain just that, mine. k?
Patricia
i have something i would like to add to my answer to you. If you give me your e-mail i will write you. If you are not comfortable posting that publicly, please write me at kathf@racsa.co.cr I think what i have to say is important and i would rather write to you privately than post it for public consumption.
thanks
k/
This is who we are. This is who we were. A mark, a simple mark. I was here.
Is that not enough in itself?
Jim. When my mind starts to go into freefall (as it very probably will, only a matter of time), or I fall into a physical decline that only stops at zero(again, long overdue but lurking always), you can be DAMMED sure that long after i have the ability to document it myself photographer FRIENDS of mine will be doing so.
Right up to the end credits. Looking to get all that LIFE into frames.
WHY? Because its there. Always. Because it TELLS us something. BECAUSE IT CAN MAKE YOU FEEL.
too many of us only pay lip service to that part of life. We put labels on the bits we DONT want to have to acknowledge. Much safer that way i guess. But like everything, it still happens every single day.
I can understand Jim’ point. The 2 images fill me with dread more than anything. Jim is right, there is nothing WE can do about it, but with exposure as DAH points out, and the way little things can escalate (current news fodder in the form of Jade Goody, and how young women are now going into hospitals for smear tests), it may help in the future.
Even though it fills me with dread, I’d rather the knowledge, and the condition was out there for others to see, rather than nobody knowing anything about it.
DAH, thanks for bringing this to us.
The photos are both simple snaps with a point and shoot camera or a camera mounted flash. On their own, they are not very interesting. However, one of the things which has occured to me is how much more powerful the photographs become, as I read peoples’ responses. Getting back to the issue of how the written word re-inforces images, this is a clear example of exactly that. Without an explanation these photos don’t make much sense.
This is not to say that simple snaps are not valid or powerful, clearly they are. In fact, I’m a big fan of the simple snap. Flash on camera snaps may not be elegant, but they can tell the story powerfully and directly. Photographers from Lewis Hine to Bill Owens have used it effectivly with no tilted cameras or other artsy gimmicks in sight. We really need to ask ourselves as we photograph, are we really trying to communicate or are we using the situation in front of us to showcase our cleverness? All of which begs and re-states the question, how “pure” are our intentions as photographers, and, does it really matter in end?
Jim, you are wondering if such photographs are simply exploitive has been addressed a bunch here. We don’t really know enough about this pariticular situation to judge. However it is an important question to ask ourselves when shooting (or viewing) documentary work of any kind.
Documentary photographers, and newspaper editors, are always on the lookout for a story to tell. A solution looking for a problem kind of. I think our true passion is for making photographs, new targets for our lenses are constantly needed. Does this make us all insincere and exploitive?
At what point do we become papparazzi?
Gordon .
Kat, yes, the flash technique worked for the photographs – as long as it was intended and I presume it was. I wanted to say something about the photography and not be overwhelmed by Mr Pembroke’s condition.
Jim, again, “But what good is your compassion for this man?” as usual you make a valid point but I do wonder how much time you give to considering your replies. I agree about your assertion that a book may not be the best vehicle for such a story. I remember buying Sebastiao Salgado’s book An Uncertain Grace and although I was awed by the photography I eventually threw the book away: I felt uncomfortable about having photographs of starving people on my bookshelf. I do have his book Workers (what’s on your bookshelf Jim?).
The place for this type of photography is, for me, the mainstream newspaper. I know that it won’t help Mr Pembroke but do you think that he agreed to be photographed in order to be helped? I would imagine that he agreed because he knew that he would not be the last to suffer from the disease and that he wanted to bring the horror to the attention of the public in order to hopefully raise funds for research.
The greatest example of this approach is probably Band Aid, who raised millions of dollars / pounds for the starving in Ethiopia, humbling Governments around the world who didn’t seem to care (no oil) but fortunately the ordinary Joe and Jane DID care.
Such photography also stimulates debate. No matter which side of the stem cell research fence you reside, such images can only help.
So while i might not want such photographs on my bookshelf, I definitely do want to see them in my newspaper – which is a different (celebrity) story.
Best to all,
Mike.
Jim, I remember a BBC television Storyville programme on television about two gay lovers who both had Aids. It followed their decline; I remember that a friend of theirs let them use a public swimming pool out-of-hours “so they didn’t scare the “straights” – one of them had Kaposki’s sarcoma, the purple lesions so common to Aids sufferers. The programme was relentless, even documenting the skeletal just-after-death trauma of one of the couple. What was the point? Who did it help? Well, I certainly won’t forget them and I won’t judge them (or others). How do we get our belief system Jim? From our experiences: and television and photography are, at their best, experiences. Have you seen The Devils Playground by Nan Goldin? Have you seen the photograph Misty and Jimmy-Paulette in a Taxi? When I look at that photograph, knowing the Aids epidemic that was about to strike; I fear for their safety.
Best,
Mike.
Hi. Thank you for everyone’s comments. I was impressed by the personal response to my work and I found them very constructive and considerate.
I don’t see these images as exploitative-I took good care of David, when I worked for him as his care worker, and I had his permission and that of his ever so careful and vigilant daughter-Deb Pembroke. To this day we remain good friends. Indeed, there is a not a scintilla of degradation or lack of respect in these images. This is a careful approach to a sensitive subject matter. For me, these images speak of Beauty, Decacy, Ruin and Endurance. All these and more.
The use of different colour backgrounds was chosen by David Pembroke on a daily basis to help express his emotions after he lost the ability to use his facial muscles due to PSP. These were combined with portraits of David’s chair where he was forced to spend most of his time, due to PSP effecting his movement and balance. The literariness of these chairs help to express David’s habitual surroundings whilst lending an increased intimacy to the subject matter and continuous interaction of metaphor by focusing on David’s emotional and physical changes over time.
I hope this answers some of your questions. This poem by Emily Dickinson, Pain has an Element of Blank, helped shape some of my ideas towards this project.
Pain has an element of blank;
It cannot recollect
When it began, or if there was
A time when it was not.
It has no future but itself,
Its infinite realms contain
Its past, enlightened to perceive
New periods of pain.
Best. David Plummer
A very powerful, unsettling and ultimately (for me) humanizing diptych, not the least of which has to do with the concerns, comments, rejections and ideas that have been waxed onto the photographs themselves by the viewers (i’ll get to that in a minute). I actually want to address both Jim’s concerns and Patricia’s articulate and heart-felt reaction (as well as her request for additional information from David Plummer about his relationship with David Pembroke), but first comments aside, the images:
I actually DID NOT want to find out information about the disease that afflicts Mr. Pembroke, Supranuclear Palsy, initially. In fact, I avoided writing here the entire day, while i spent a few hours walking and talking with Marina, and thinking about the work, the comments, and the different reactions and orientations that work such as this draws. Some of the reaction just out and out perplexes me (Jim, no surprise), some of the reaction makes sense to me (as both a photographer and a person who also suffers from a genetic disease), some of the reaction seems self-congratulatory, but that is the importance, for me, about the ambiguity and the potency of this pairing of photographs. As usual, i looked at the pictures for a long time before i read the provided text. Upon reading the text, i was indeed jolted and a narrowing of reactions came. The power and the potency of what is left unexplained and unexamined which points to our emotional and, if possible, sympathetic relationship to the circumstances of Mr. Pembroke’s life. By sympathy, I dont me the very real and human reaction to a person whose life has been afflicted and constricted (i use this word descriptively, not pejoratively, for we do not know the ‘limitations’ of his his life, just by the diagnosis or description of a disease) by a circumstance outside of his/her control. The right panel is, to me, the more harrowing, because of the absence of MR. Pembroke, and the near-like horror-film sense one gets, which suggests the lost motor coordination and movements, involuntary functions which are necessary to sustaining life gone awry and the bare-teeth terror that surely arises: an incapacity for the ‘normal’ negotiation of living day-to-day: the stained rug, the toppled cup, the box of black wire inexplicably connected to the chair (to elevate and assist in movement?), all shot in a matter that seems to replicate a crime scene snap. The portrait of Mr. Pembroke, equally unnerving, with the flash points of light scattered across his cheeks and forehead like a odd firmament, the bruises and what appears to be shoulder padding or chest protective gear (as if he’s a battered football, rugby or Rollerball athlete) which makes the sense of the physical violence that befalls him that much more palpable. It looks like his entire chest is engaged in protective gear beneath the white shirt and his expression, as if a Christ figure from a 16th century painting, searing our connection to him and his plight. On a visual level, both of the images, though simple and un-stylized, contain extraordinary power, extraordinary, existential human power aside from the facts of the condition of Mr. Pembroke’s disease. I do not need the information of that to feel that these two images together speak to me of struggle and difficulty and the searing loss that accompanies something gone awry. Together, the pictures play off one another in extraordinary and strangely ambiguous and ambivalent ways….they tie one another like an investigation, carving up a odd pathology of place and loss…and without the information of the disease, they evoke a peculiar helter-skelter sadness that is not easy to arrest….a powerful combination…..
and then comes word of the subject matter, and all this intensities, as do the questions. Like many, I would love to see the series played out and once I understand that this is a project documenting MR. Pembroke’s disease, my reaction intensifies. Unlike Jim, I do not at all see these photographs as exploitive, but harrowing and important documents. It is a bit frustrating, for sure, to tackle such a powerful subject in a single diptych, but we are not given more, so we must wrestle with what we do have. I trust and believe that David’s has a close relationship with Mr. Pembroke and has chosen to document this disease and the life of Mr. Pembroke in the best way he knows how, in the way that seems to offer the reader a doorway into the physical and emotional aspects of this particular person’s struggle with this particular disease. I cannot imagine that Mr. Pembroke and his family would be unaware of the images or even how they are shot and how the grouping is made. Far from pity, I am drawn into this life, not simply the plight of the disease, but the negotiation of it, the pain and the joys that still accompany his life. Kathleen mentioned Jean-Dominique Bauby’s The Diving Bell and the Butterfly (i read the memoir when it was first published, but I have not seen Schnabel’s film), and that book is a no-holds bard examination of Bauby’s life after his stroke: the beauty and the horror of his experience. The same is true of the extraordinary memoir of Christopher Dolan, “Under the Eye of the Clock” (read it!) or Christy Brown’s “My left foot” (movie ie Brown’s , both of which describe and transcend the mere description of a life that struggles with the ravishing of an extraordinary disease and the effort to transcend the disease: it is not who I am but is a part of who I am. The difference, of course, is the the people who are wrestling with the challenges of these diseases are telling the story and here we are being told, or rather, shown the a person who is battling a disease.
And yet, I think those who find this exploitive make an extraordinarily pretentious leap of moral judgement when declaring that. Each of us wrestles with the need to document this life and the stories that surround. Each person must wrestle with those questions themselves and I find it disappointing that, rather indifferently, some have judged both the photographer, and by extension the subject, and questioned the value of this work vis-a-vis reporting or documenting this specific person’s life and the struggles which alight. In fact, I cannot make a judgment as to David’s relationship with the subject and additional information is in fact not necessary. Each of us negotiate this daily when we look at news images and seldom if ever howl out “exploitation”. The papers are filled with the descriptions and depiction of people who suffer, for our own selfish needs, and we rarely question these. In fact, just last night I looked through the work of War PHotographer Bruce Haley’s work, in particular his horrific images from the Burmese Civil War. His work is profoundly difficult to look at and in particular his famous series “Execution” concerning the execution of a man tied to a tree at knife point. This series is an extreme example, but we are sated by images of others, including others ‘joy’ and rarely question the legitimacy of that work. I do not understand how, on one hand accept work as necessary and critical and yet on the other hand require others work to prove its validity through a testimony of proof that there is a personal relationship. I think this is about US, not the photographer and we must accept and process it that way.
How does one wrap their head, their moral judgment, around such important and powerful images such as this:
http://www.photogrowth.com/images/blog/2008/1128_Eugene_Richards.jpg
Eugene Richards photograph, ‘Abandoned, Psychiatric Hospital, Mexico, 1999’ from his series on an Psychiatric Hospital in Mexico, the image itself which caused lots of fervor from people who accused it of being unfair and immoral and exploitive, and about which Gene wrote “….and that is her first in her mouth and she is seventeen and living in the crazy place and this is the shot but they dont lik it because it is too close and people say you are difficult and your think just look at her and this should go in the magazine because…”
and than there is Sally Mann’s extraordinary series about her husband Larry. Mann, (the photographer with whom i feel the most close), has photographer her husband Larry, who has Muscular Dystrophy. In the most recent edition of Aperture (which i was reading again this morning in bed), Mann published some of these sublime extraordinary photographs of her husband: painful, poetic, gut-wrenching, soulful, hypnotic, incantatory, sublime witness to the physical change of his body. Many will find these photographs horrorific or sad or death-obsessed or too focused on the wasting away of the muscles (the clenched toes of his feet like the fingers of from her extraordinary photograph “The Two Virginia’s #4, 1991” from her book Immediate family: his toes the same as the older Virgina, the connection of one life to another, in the falling away of things. Mann’s photographs of Larry couldnt be father away from Patricia’s self-portaits, emotionally and existentially, and yet they both deal with the negotiation of life, the acceptance of life and the representation of what that means.
And of course, the extraordinary and difficult final work of Diane Arbus, her Untitled series dealing with adult mental illness….all these questions, important ones about relationship between photographer and subject, can and must be explored, but will shall never understand them through quick judgment or condemnation, but rather through distilled reflection and self-examination….
Which brings me to Patricia. Patricia, as you know, I too have a degenerative, genetic disease, called Coates Disease. It has left me blind in my right eye and suseptible to all kinds of problems with my eyes. This disease, beginning as a child when my second home seemed to be PHiladelphia Eye Hospital for Children, has made me the person I am and has conditioned and defined me. And I have continued to tell this story in the things i write and the way i photograph. And yet, I cannot say that if another person were to tell my story, or the story of blindness or struggle, that I would need them to make sure I was fine with it. In fact, I would grant them autonomy, entirely. I think, it is important for that reason, that each person must make do with what they have and with who they are. I actually do not need David to tell me exactly what his relationship with Mr. Pembroke his, because whatever he tells me will not change the fact that this diptych and this disease is now part of my mental landscape and I want to know more about this disease. In your own work, you too have described ‘suffering’ and sadness and loneliness, though your work tends to me, ultimately, celebratory and joyeous. That is also the type of person you are. I know you did not like when I once wrote the word ‘confided’ to describe being in a wheelchair, and I understand that, though at the time i had not meant this in a pejorative sense, rather a descriptive one, but I understand the need and necessity when describing a life to pitch against all that renders cliche and ‘confinement’ of idea. I think that if David does not have a personal relationship with Mr. Pembroke and photographed this series as a way to express his own terror or fear, this would be just as important and just as necessary. For we spend our entire life negotiating life and evaluating life and recognizing and judging our life and the life of others. We do this, each of us, often from our own sense of rightness and compassion. But the truth is, the richer way is to see that, there before god, each of us goes, and each of us wrestles with our own reconciliation to this.
There are NO answers and I am willing, as testament and witness, to listen and see all stories as a way for each of us to continue to offer them as broken coils and springs of which we are made. The torturous sadness that eminates from this diptych is real. Is this subjective? Is this one-sided? Is this superficial? Is this compulsory? I cannot say. I can only say that the photograph provokes and offers us a window into a world that view of us understands or frankly cares about. What strikes me as profoundly disingenuous are the kind of moral judgments that accompany work such as this. For in truth, it is much easier to sit in judgement (as Jim is doing) that it is to live of life of real compassion and real action. That is the gross irony.
Difficult and provocative work is necessary. For we must be uncoupled into to feel our connectivity to all things. For that, I am happy the work has been shown, and just hope we get to see more, a deepening or an expansion of this project.
lastly, just so as not to confuse, i completely understand Patricia’s questions/reservations, i just feel that we must be careful NOT to allow our own way of describing and detailing struggle, in all the forms of our lives, as the one that best represents that life. In the end, what matters to me is the work and the field of the way that is lived…
Power work and I am very happy to have seen this and look forward to seeing the entire series…
all the best
bob
SALLY MANN’S WORK From Current Edition of Aperture
http://www.aperture.org/aperture-194.html#one
One last note, just so there isnt any misunderstanding…
Patricia: I completely understand your concerns and appreciate and value your sensitive and articulate concerns/questions…so, i hope my long-winded response isnt mis=interpreted: i mean, for me, the relationship between the two David’s is important and nourishing information for us as readers, but I didnt need to know that in order to value the work…that’s what i meant…but totally understand your concerns :))
hugs
bob
David Plummer, your personal involvement with the subject of your photos imbues them with meaning for you that they do not convey objectively to me. I am certain they hold great meaning for you, specific meaning, as you lived within the context of the photos you shot. But I do not have that context, I do not have that personal relationship. To me they are simply pointless records of suffering, and photos cannot redeem suffering. If you publish them in some other venue, they desperately need to illustrate a written story, not stand alone.
Kathleen, when I see photos of suffering in Sudan, or Darfur, or any of hundreds of places where man’s inhumanity has caused unspeakable human suffering, I can rage against the men who perpetrated that injustice, and I can try to help feed some people (even though people starving in these situations are usually surrounded by food they cannot get – an ethical issue). But when I see undeserved human suffering with some rare, incurable disease, there is no effective response I can make, so I am left with raging against god. But god would not cure this man’s disease (I assume he is dead, now). What’s left is a stark record of undeserved, unredeemed, human suffering.
I know as an editor I would never publish such a photo. The outrage it would provoke would be aimed at me, not the disease.
Jim,
going by this, are all photos of disease pointless? What do you think about Nachtwey’s recent story on XTB? Is it pointless, too?
I for one would be interested in how many hits the following web sites have received since this was published.
http://www.ninds.nih.gov/disorders/psp/psp.htm
http://en.wikipedia.org/wiki/Progressive_supranuclear_palsy
So we don’t highjack this thread maybe the following question should be answered in the latest Dialog thread, I would also be interested in hearing the numbers generated by the web site hit counters of featured photographer’s here on Burn.
jim – there is not much rage here against the editor publishing here..
again – in your opinion you neglect the help, quantifiable or not, that the process of this shoot might have lent to the subject of the shoot.. and the help that other sufferers might gain from seeing the disease in the open.. the spin-offs from a photograph like this will be unseen and wildly varying.. who knows who has seen it here, for example?
as with bob and patrica i have a genetic problem which is incurable and effects every waking moment of my life.. i think all three of us are expressing our illness and gaining positive results from the use of photography and understanding..
if the subject of the photographs is not a photographer i think his association with david must have been a positive release for him.. the relationship must have enriched his life somewhat.. even if in an intangible way to most of us.
i feel like posting my self portrait again.. since i took it my mind has expanded greatly regarding my illness.. and the perception of myself in the eyes of others.. i´ve even begun to wear t-shirts again.
http://www.bophoto.co.uk/frontphotos/fortheloveof.htm
as an aside my 5 month old son shows no sign of the condition.
the benefits of showing the above photo could be two fold – in helping educate about the disease and in allowing david to have his condition shouted about and not swept under the carpet..
after all – ¨a stark record of undeserved, unredeemed, human suffering¨, must surely be as valuable a document as it´s direct opposite which pervades ever hour of our daily lives in the media.
david
what IS certain is that if work like this is NOT shown it will benefit NO ONE
The causes of TB are well known. It can be prevented. A sufficient medical response in places where poverty precludes prevention can reduce the incidence of TB to less than one percent, the situation in the United States. Focusing attention on the issue with photographs serves an important purpose and can lead to a solution.
Extremely rare incurable diseases are another matter. They effect too few people to solicit an effective response from large enough populations.
david, most people’s reaction to this photo will be to turn the page, not respond with money for research. That may be ethically reprehensible, but I have enough experience publishing photos in newspapers to know the reaction such photos provoke. Just as doctors don’t like to treat patients they can’t cure, readers don’t like to be confronted with photos of suffering for which there is no quick fix.
jim – with respect that is not an argument for excluding the photograph here.. since this is not a newspaper.. and in any case i think you are wrong..
i think people are interested in others lives and while a daily may not be the best avenue for this work there is a good avenue for this work.. ergo – the work needs to exist.
nb – i know i´m not the david you refer to .. just too many davids in this thread.
david
Bobblack
Thankyou for your awesome perspective once again.
Bob, we all have our our personal struggles, our tragedies, sometimes our physical limitations and always, our emotional baggage.
Being another Canuck, you may have viewed the CBC Documentary about a Bankok sex worker, don’t remmember the maker or the title I’m afraid. But a line from the documentary with the young woman speaking always sticks with me “everyone have a story, I have story too, but no-one care…it’s OK”.
Speaking for myself, I have long ago realized that the only photographs I make that will mean diddly-squat to those who come after me will be those that document my own story. This was pointed out to me many years ago in a photo magazine piece by Nathan Farb, documenting the struggles of his mentally handicapped daughter “Esme”. This piece always stuck with me, and resonates for me now, as the parent of an autistic 23 year old son. I photograph him constantly. I’m not sure why, but it somehow gives me comfort, and helps me understand who he is, and helps me figure out what is truly important in my life, and what is not.
Lovin’ Burn, and you-all.
Gordon L.
Jim,
I completely agree with you on the power of photography to focus attention on preventable medical issues such as TB (just look at Nachtwey’s photography) and I agree with you that many people see photographs like the one above and will instantly turn off.. but what if one person sees this photograph and decides to dedicate their life to people with Progressive Supranuclear Palsy, they probably won’t find a cure but they may start a clinic to take care of people with the disease. It is impossible to understand the positive implications of taking a photograph. For me, a couple hours of photographing an underfunded orphanage, in a region in Uganda hit hard by AIDS, brought in a large international organization that now funds the 60 or so children. If nobody knows, how can anybody help?
This is an ethical issue, and we will never resolve it on this forum. I’ll agree to disagree and move on.
interesting all the same jim.
thanks.
david
Jim,
Yes, i think i understand. And i think the difference in our reactions is the difference in our personalities. It never occurred to me to rage against God who i have a somewhat less than intimate relationship with anyway. It never occurred to me to feel helpless because that’s very depressing. We’re just different. I am inclined to think like Matt. Maybe one person will see these photos and decide they want to kick PSP’s ass. Yeah, forever hopeful.
You know, sometimes i wish i had known you when you were a wide-eyed idealistic 22 year old. In some ways it’s a shame you have seen so much. Somewhere along the line you got very tough and drew some very hard lines in the sand. That’s ok. It is really ok. People like you here. i see you becoming more prolific, explaining more..you put the machete away and though you still wield a mean pocket knife, for the most part i believe your heart is in a very good place. DAH seems to be a good safe-cracker and you have opened up a LOT in the last few weeks. i can’t even believe how much!
Bobblack, incredible post..i read every word and understood most of them ;) Wow, you know, i didn’t know about your vision problem as your essay was hot off the press when i arrived and i didn’t actually spend much time here initially. But my impression was, wow, blur..love it! And this is because my vision is very blurry for long distance and that distance is getting shorter and shorter every day. So i see so much in blur that that’s how i think everything looks, you know? And so when my photos come out blurry, i really like them that way. i have an allergy to photos that are so sharp they cut my retina. i cringe, i close my eyes, i shrink away from those photos. i simply don’t see the world that way. And this makes me really reluctant to show my work because some of my favorite photos would be panned from here to Photography 101 for being blurry. But i shoot manual and i shoot fast and mainly in low light and it’s super hard for me to focus well and that’s how it goes. And my Bessas don’t have dioptors and anyway, i don’t care. i really love indistinct, blurry images. So connotative rather than denotative. Sensual, suggestive. And your work validates my own thoughts on this subject. huh..so now i get why!!!
ALL..there are so many excellent observations here and the discussion is so powerful..i want to thank everyone for providing their perspectives. This has been another hugely rewarding exchange.
David: Thanks for posting your thoughts. The Emily Dickinson poem is beautiful. I love your diptych..and my reasons are all of the above. Thanks to you and everyone!
Kat~
Kathleen, I was never a wide-eyed idealistic 22 year old! ;)
My wife (whose personality is the exact opposite of mine) swears I was born a 40 year old!
I don’t carry a machete. I did, however, upset a young woman on an ACLU message board once so badly that she started a thread suggesting I eat raw infants. That was back in the 90’s, though, and I’ve mellowed a lot. :)
Jim
ohgawd..thanks, i needed that bit of comic relief!
“MELLOWED?” she bellowed, then looked around and hissed facetiously under her breath..”darlin’ if you have mellowed, then i am Anna Nicole Smith”.
Stay just as you are, don’t ever change..the rest of us will find ways to adapt.
And thanks for the laugh, heh. It was wholly unexpected..oh yuh, and please do wave howdy for me when you fly past Hillister. i really do miss that place :(
best:
kat~
So I see your position Jim: photograph only that which is affects a large portion of the population. Sorry, but your reasoning is just about the silliest thing Ive ever read. You can have issue with how this was photographed, but instead your issue is with the fact that it was even photographed in the first place. Jim, just because something is not curable NOW doesnt mean it wont have a cure. Every disease was originally incurable. It doesnt mean no cure will be found in the future. Does this mean THIS photo will lead to a cure? No, but your stance is dont cover anything that doesnt have a cure, ever. What a silly, silly stance. From a newspaper editor, nonetheless. Id love to see your paper, must be a safe publication.
Also, Jim, for a PJ and a newspaper editor it is very strange to see you so oblivious (even hostile) to the power photography can have to bring about change, even a small change. Let me ask you this, since you take such pleasure putting down anything not PJ – what good is your PJ if it is kept safe and sanitary, god forbid it should ever cause a controversy. Jim, do you even know what you stand for? Im starting to doubt that very much. What sort of PJ do you practice? Country fairs and home coming games?
ALL…
the ” A DAY IN THE HOOD” that i promised last night is almost ready….
5 more minutes… im really excited… hopefully is wayyyyyyyyyyyyyyyyyyy more different style than my usual….
im not gonna posted here… im gonna hijack ANDREW’S “room” once again…
i dont know why… its just feels like home… thats why…
gimme 5 more minutes..
love y’all…….
Rafal
wow…you said things here that i have wanted to but didn’t have the nerve, the phrase “Rotary Club fundraisers” would repeatedly come to mind and i’d squelch it..i don’t want to speak for Jim..just want to make an observation that i noticed in this thread. i think if you read carefully you see him laying bare his own personal frustration with difficult or impossible situations like this diptych represents. He revealed his own..not from a Pj stance, but his own honest and heartfelt reaction to this photograph. It might not be yours or mine but it’s his and completely valid. I was touched and impressed that he did not bring anything else to the table when he expressed his frustration and helplessness. It was just Jim being real. I just had to say this in case you didn’t pick up on it. What you say here is absolutely right but read back and maybe you’ll see that, imo, Jim is warming up, relaxing, opening up a bit..
Now Jim, don’t go making a liar out of me in the very next post, k? Stifle it and go back to the discussion on “Hand”…;))
best to all
kat~
JIM
First, know that I mean no offense to your own views..but I was thinking about you comment that certain photos will just make you or the readership you are familiar with turn the page because there is no “effective response”. It seems that you genuinely want photos to serve humanity, and because you’ve seen what does and doesn’t work in a known context, it makes sense that you would continue to lean in one direction (as an editor, photographer, person)..except that there are many different contexts and audiences and minds and sensitivities, many (non photographers) who are highly invested, intelligent and may not ingest the daily rags at all or, in this example, even believe in God…(You wrote that these images leave you raging against god, but this would never occur as a response to many) All I am trying to say (in a pre caffeine ramble) is that if you believe in the power of photography, you might be heartened by the thought that there is a (non photographer) sector of the people who would not fault the editor in bringing such images / topics to light. Be glad of that..that photography impacts many people differently than in the way you have seen played out. The world is large, and thankfully, so are a great number of minds, many of which may source and respond to information in ways that are outside the norm that you have routinely encountered.
Rafal, you give photography too much power. Have you noticed that, despite the fact that millions of photos have been published showing the horror of war, there are still wars? Despite the photos of genocide all around the world, it is still going on. Despite the horrific photos we see daily of untold numbers starving to death, governments still starve their own people.
It’s not that I do not think these photos should be published. More light is better than less. But the reality is that the power of photos to change reality is incredibly limited. If you want to tilt with windmills, don’t let my cynicism stop you. I’ve spent my life doing just that.
Erica, they don’t have me raging against god. My point was that there is only one option available if you want to complain about undeserved suffering. Since most people in this country profess to be Christians, and since they are unlikely to curse god for this kind of stuff, they just tend to turn the page.
ALL…
this has been the tightest thread discussion on BURN so far…and a good one…all comments on point and staying right with the photographs published….this alone speaks to the strength of the images….
after i published these, David Plummer came forth with all of his images of David Pembroke…i wish he had submitted all of them to me in the beginning, because seeing this sequence would have been a very interesting essay indeed…i think he may post a link for all to see….
cheers, david
jim – do the ethical problem in part have something to do with the context of use for you.. the amount of funds the photo might raise and where the money from such work ends up being channeled?
for me – when i think of ethical problems within photography it is normally with respect to advertising and commercial use.. fast food aimed at children.. adverts with happy people encouraging others to over-stretch themselves with debt..
i know there are ethical ambiguities within work containing tough subjects and it is a worthy discussion for sure..
i may well find ethical problems with some peoples motivation for covering conflict and disaster.. although for end use of photos i find many more problems with advertising than any other use..
david.
Jim..
my experience differs from yours..I have seen that even amongst the masses, there are many who actually act on “Christian values”, doing more than simply turning the page..
RAFAL…JIM…..ALL
yes, the downside of human nature overrides the power of photography….
yet, the upside of human nature always makes us want to do SOMETHING…
photographers, and journalists and filmmakers and care givers and social workers etc have all tried very hard to swing the vagaries of our genetic animal make-up in the direction of “let’s fix this”…
does it work? the pessimists will say “no”…the optimists will say “yes a little bit”..nobody but nobody thinks the worlds ills will be cured by either information or even by direct action…however,some things HAVE been changed by quality input that changes the actions of the so called decision makers…
as with everything else in life, it all depends on what you believe to be true and how you are going to spend your time and use your talents on this beleaguered planet….there is no empirical manifesto…
it seems that for most of us here, we fall into the realm of let’s at least TRY..what all of us do when we get out of bed in the morning depends on our motivations and sense of self and our perceived expectations of result…
in my experience, i would much rather deal with people with a positive attitude….they at least do get SOME things done…folks with a negative attitude have NO CHANCE whatsoever…place your bets….
cheers, david
David, despite my cynicism, I continue battling the odds. Lost causes follow me home like sad little puppies.
JIM….
yes, i believe you…and i think you are a good man…just because we disagree on the manifestations of our work, does not mean in any way that there is any clash whatsoever with your humanity…and i feel for you because you say “lost causes follow me home like little puppies”…that is a stopper…
peace, david
Jim,
How can you suppose to know what most people’s reactions to David Plummer’s images of Mr.Pembroke are?
To echo DAH’s and others’ sentiments regarding these images: what affects people (disease, hopelessness and loss), are part of the human condition. And when struck with some tragic circumstance or unwanted affliction, we realize how little control we have over our lives. I find images such as David Plummer’s, David Bowen’s, Patricia Lay-Dorsey’s, Sally Mann’s, and Diane Arbus’s heartwarming and they show me that I am not alone in my struggle to persevere and understand.
Staring headlong into the ugliness of reality, reminds us of the impermanence of life.
Salutation to the Dawn, translated from the Sanskrit~
Look to this day! For it is life, the very life of life.
In its brief course lie all the verities
and realities of your existence:
The bliss of growth; The glory of Achievement;
For yesterday is but a dream, and tomorrow is only a vision;
But today, well lived, makes every yesterday a dream of happiness,
And every tomorrow a vision of hope.
Look well, therefore, To this day!
jim,
i am with you. i have seen and been so close to such horrendous things not necessarily war, since i would be first to die physically; but poverty and hopelessness that oftentimes, i feel to die slowly is far worse off than being shot. at least there is some freedom if some end is offered. whereas i think it is necessary to post pictures like this, hopelessness and frustration are things that i dont have a lot of stomach for, not anymore since i had my kids. i try to be upbeat, be optimistic, when i am thrown lemons i make lemonade so to speak. but lemonade can also become stale, not refreshing, moldy if it is all you have. it gets too old. in the end, ‘overexposure’ makes people calloused and cynical.
i have more strength burned everyday to fight cynicism. each day saps more and more power from me. there is a tipping point for everyone. so when i am feeling down and sapped already, i take care of myself. i protect myself from things that i may perceive as negative that bog me down, therefore, i turn the page.
Im no romantic as far as the power of photography goes but then again, let’s not neuter photography by restricting it to feel good subjects. Like it or not, this is a reality. Better to confront its existence than plonk our heads in the sand.
ALL…
for those interested in the whole David Plummer sequence on David Pembroke, here is the link:
http://www.lightstalkers.org/davidplummer