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Sue Jones

There may be many purposes for making art; for showing work in an exhibition though, the overarching purpose is singular – to communicate something. Showing your work in a public space is, in its simplest form perhaps, a conversation between the work and the viewer, regarding what impelled the work to be made in the first place. Penny Watson and I purposefully decided on the theme of Memory for the Level Three show we curated at the Nuffield Orthopaedic Hospital in Oxford – it is still on – though somewhat depleted. We wanted to allow fellow students the widest brief to engage with, and the exhibition we created reflected that diversity. Jesse Alexander recently said of the exhibition as a whole: “I thought the standard was very strong and represented the programme extremely well.”
Sue Jones, one of the seven selected students, presented a striking set of images that deals with her continuing struggle with Myalgic Encephalomyelitis (ME), or as it also sometimes known as Chronic Fatigue Syndrome (CFS), and at other times as Systemic Exertion Intolerance Disease (SEID). “This [ME] gives me crippling fatigue, difficulties in concentrating, memory problems and general struggles with life.” The six images Sue provided (one less than the brief requested) portrayed her various responses to this affliction.
When Penny and I hung the work we considered both the position of the work in relation to how/where it would be seen and, what other work would be close by. This positioning we thought would potentially add layers of narrative; Sue’s work was situated as the first work to be seen when entering from the open reception area. The work had impact and we knew that it would be noticed in its primary position.
A little after two weeks from the start of the exhibition we were informed that there had been some complaints about the work, apparently a dozen or so members of the public had voiced their concern and there had been suggestions that the work appeared to depict suicide. Whilst we aren’t aware of the total numbers of people who passed by the work, certainly hundreds, possibly a thousand or more, the hospital decided to remove the work due to the distress the work had seemingly, caused. We were disappointed; Sue had very clearly described, in the statement she wrote to accompany the work, her coping mechanisms with the condition together with her symptoms. Similar to all the work supplied for the exhibition it was thoughtful and provocative.
I will admit to some ignorance around the subject of ME or CFS and a little research into the subject suggests that I am not alone. The World Health Organization (WHO) has classified CFS as a chronic (long-term) neurological condition, and this classification has been accepted by the Department of Health. However, the WHO’s decision remains controversial and isn’t accepted by everyone working in the field. The NHS choices website on this matter isn’t any clearer suggesting that the causes of CFS are unknown and that “More research is needed to confirm exactly what causes the condition.”
Sue Jones’ work has achieved what some other works have not been able to do, start a conversation into an area still shrouded to some extent in mystery. That it did so by being removed from the public arena is a shame. The Exhibitions Manager at the Nuffield Orthopaedic, who tried very hard to mediate a solution whereby the pictures could still be displayed, mentioned at the study day the critical difference – that of context. The permanent art spaces in a hospital are still in a hospital and aren’t galleries, which of course is true. However where better to debate the conditions surrounding this condition and bring them to the public arena than in a teaching hospital?
OCA photography student John Umney, who organised Memory in collaboration with arts and health charity Artscape, writes in this week’s Oxford Times about the exhibition and the benefits the arts bring to health and well-being.
Image Credit: Sue Jones

Posted by author: John Umney
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28 thoughts on “Sue Jones

  • I can relate to the issue as many hospitals and those involved in heathcare aim (rightly) to promote positive visions of living with chronic conditions – “you can still enjoy life with xxx”. Thus in presenting the stark reality of some aspects of her life Sue’s work sits uncomfortably in that context.
    Indeed there are not many places where such truths can be shared without driving people away of receiving challenging responses. Nevertheless the images do need sharing and there is a need to recognise these realities rather than present oneself as content with living within such circumstances. But, as has been recognised, hospitals are places of sensitivity and if I’d just been diagnosed with ME and seen the images they might scare me.

  • I find it difficult to express in polite terms how strongly I feel about this decision by the Nuffield.
    As I understand it, the Nuffield provided guidance for exhibitors on what could be displayed, which included restrictions on political work, nudity and scenes of blood and operations. It was on that basis that students were encouraged to put the time into developing work for exhibition and the expense of gallery quality prints.
    To discover, post-hoc, that there are a further set of restrictions is frustrating to say the least. In general terms this is disappointing, but I know from personal experience that people with ME often feel their symptoms and experience is belittled and that this, in and of itself, damages their chances of living a tolerable life. I would have hoped hospital executives would consider the impact on Sue, but there is little evidence of this.
    In fact, there is little evidence full stop. John has been told that there were complaints but not the number or any specifics – for example is there one image in particular that is problematic – which could have informed a discussion about a partial rather than full removal.
    On the other hand, there is good evidence that creative practice can enhance wellbeing.
    I am annoyed and disappointed and will be writing to the hospital to ask for a fuller explanation.

  • I just lost the last post I posted but am not sure whether it will turn up later!
    To sum it up.
    I also exhibit in hospitals sometimes and I used to work in a hospital (not as an artist though).
    Patients are sometimes in a very vulnerable position due to recent diagnoses, loss of loved ones, mental health issues, etc and its understandable that the hospital has to have that as their guiding principle.
    Also my experience is that administrators do not neccessarily know much about art, and so might not be very good at anticipating the kinds of issues that might occur within specific guiding principles: therefore I am not surprised that they didn’t predict any problems and so ended up reacting in this way:-)
    Hopefully they will update their instructions for future exhibitions of work so other student artists are not caught out by it.
    Really hope people will see Sues work here and she’ll find a more sympathetic audience for it in this educational context.

  • As someone who suffered from this debilitating condition for four years (I am lucky to be one of the smallish number to have fully recovered) I still find myself having to give explanations about ME to people who do not think it is a ‘real’ illness. It is pretty clear that there is still a major gulf in understanding about the impact it has on those who suffer from it. Even more reason for images like this not to be censored, especially in the context of a hospital.

  • As a mother of someone who has had ME for nearly 20 years I understand the importance of ‘getting the message of ME out there’. I think that using the medium of photographs is an excellent way of communicating about this illness as words sometimes fail us. In the light of the stigma that ME still has in hospitals, then I am in some ways not surprised by what has happened. Even though not surprised, I am appalled however and I think it must have been a real blow for the artist to be told her work is not cheerful enough! Having agreed to show the work, to censor it afterwards is salt in the wound (so to speak).

  • As another one-time sufferer of “yuppie flu” (yes, it was widely dismissed back at the time I had it), seeing work which deals with ME is interesting to me on a personal level. I know I would not have been able to approach it thus, but I too used education as a means of combating the condition (a goal in the midst of the symptoms to help keep me positive). Whilst I’m “recovered”, I am aware of what could happen again…
    Should this work be suppressed? I think not, but can understand a response from the hospital if complaints were received. It should have been a more considered response though, but they are a public-facing institution that is frequented by vulnerable people. However, I would expect that those that complained will have likely have done so from a position of ignorance and being uncomfortable (as I guess some did with Pete’s work he exhibited last year in Sheffield). This would have been a good opportunity to educate. An opportunity now lost.
    Sue – good luck with it all going forward, for the photography and the daily battle.

    • Sue, Art has to go beyond mere entertainment, and it seems as if you have done this in a very personal and striking way. I think what has happened to you is part of the experience of being an artist, which other OCA students can learn from. In a way, the negative response of others is evidence of the strength of your work. Hold on to that thought.

  • There are various levels of confusion for me, not unusual in my case, however if the health care institution had been other than orthopaedic my sympathy would almost certainly have been greater. This work might have stood in any number of public institutions with as much connection to mental health; a library? a museum? a bus station? as, in effect, a bone hospital.

  • I have to say I was also very surprised by the reactions at the hospital. My original aim of the relapse photos was to keep my sense of humour as I had gone for a stressful international sales job, and doing triathlons on the side, to becoming house bound and challenged to even make it to the pharmacy down the street.
    I honestly thought that depicting this like an interruption to every day life by needing a rest, a snooze, a quiet time to be able to gather the energy to carry on was funny.Like a toddler who suddenly falls asleep whilst playing with a toy, or climbing the stairs, or eating a meal. And add in some insight to the ways you try to entertain yourself whilst activity is limited – can I make the perfect paper airplane? Or learn to arrange flowers?
    I hoped it might resonate with an audience of what I supposed would be fairly healthy active people suddenly and unexpectedly encumbered or housebound by a broken bone or joint replacement, which would ultimately have a full recovery.
    As such, I really never aimed or considered it might upset or disturb anyone. A reaction I really wish I understood, but as mentioned already, the feedback has been less than enlightening.
    It does prove one point my tutor made. Once you put your work “out there”, you have no control how other people see and react to it. It has a life of its own. Which one day, I will have again too 🙂

  • We need to talk about ME and we need to talk about suicide.It is better to feel a strong reaction, even a negative one than sweep either under the carpet. To so do, is to create a taboo. OCA is not above this. I was “cautioned” about mentioning my ME in my blog by a tutor. On a daily basis, my illness is routinely ignored by my bosses because I look okay. If I was in a wheel chair, there would be a constant reminder. So, we need to ram this message in peoples faces to the point where the ignorant are confronted and ignorance informed.

    • Adrian, I’m so sorry to hear about your illness being ignored. I’m surprised by issues with the OCA as my tutors have been very supportive and understanding.
      It is so difficult having an invisible illness. Or in fact, when you get visibly tired or distressed, it means you have ruined your pacing and set yourself back, sometimes as the only way to demonstrate your limitations to others.
      Helping people to not ignore it is difficult. A friend got me a T-shirt printed saying “I’d love to chat, but I need a little sit-down”, which can work wonders with neighbours and friends. Though my husband bought me a Tshirt that says “I love to party. And by party, I mean sleep.”. Sometimes there is a sense of humour to be shared.

  • All of the comments above come from the viewpoint of the artist as exhibitor or the sufferer from ME. None of it come from the viewpoint of the person who is in hospital for other reasons. I do not fully understand what the Nuffield does – only orthopaedic? In which case my comments might be misguided. (though broken bones can be caused by (domestic) violence amongst other things).
    Just over 1 year ago I came out of Truro Hospital to collect my 15 year old son who had attempted suicide. I did this again 3 months ago. The hospital has much art in the halls. If these images had been amongst the art on display I would have been most disturbed. Patients and those visiting patients are frequently in an emotionally vulnerable state. I don’t think I could be mocked for not taking the time to look at the artist’s explanations as I walked through the corridors to the ward where my son lay. And even if I had, due to the reason for my son being in hospital the images would still hold a different meaning than what the artist had intended for me.
    I think the message that the artist wishes to put across – shedding light on ME – invaluable and the way the artwork does this very considered. But the venue needs to be taken into account as well. A hospital needs to consider why it is displaying art which is there to communicate a message. Most visitors to a hospital are not there first and foremost to see art and engage with art. I am not saying there should not be any art in hospitals – far from it. What art can communicate is often invaluable to all those who frequent hospitals. But most visitors to a hospital don’t want to be there in the first place.

    • I am so sorry for the situation that took you to Truro Hospital. And I hope I can empathise with such a tragic situation; it must be one of the worst reasons to have to visit a loved one.
      I don’t think I have expressed strongly enough that I never wished to upset anyone, just make their day a little funnier and happier.
      In hindsight perhaps a hospital does add a different interpretation on the pictures. But as I understand it, Nuffield is purely an orthopedic hospital – so purely issues with broken bones, and I just hadn’t anticipated any more upsetting connotations.

      • Hi Sue
        I have no doubt that you work was made and displayed with the best intentions. Especially as it was made by you, someone who suffers from ME and has to live with the comments from other people about this illness. But I do think the venue has to be chosen with care. The venue becomes part of the work. Imagine if you put the same images in a gallery setting, on billboards at a busy intersection, in a school, in a nightclub, in a glossy magazine, on the wall in Starbucks, in a prison. All of these venues would lend something to the work and each time the work would be viewed differently. I just don’t think a hospital – even a broken bone hospital (who knows why the bones were broken and if they will ever mend) is a suitable venue for this particular artwork. (I actually really like the one with the bathtub and think it is quite funny). All the best with your future work!

  • Hi Sue (or maybe John),
    I will be in the Oxford area in about a week as we are visiting the UK from South Africa. I had planned to visit the exhibition and am sad to miss your part and was wondering whether your prints are available to see anywhere.

    • Doug, the exhibition will be on until July 3rd. There are no plans for it to exhibit anywhere else at present. Hope you find the time to visit.

      • Doug, I’m afraid that this is my first (only) exhibition, so can’t offer you an alternative venue to view the pictures, except online as noted above.
        Do enjoy your visit. There are some wonderful images in the exhibition that I really enjoyed.

  • Sue
    Congratulations on your work and raising awareness of ME. I have been coping with ME for over 15 years and while it’s not as severe as before, when I have a relapse I describe myself as feeling ‘half dead’ due to my inability to perform tasks that require any energy or concentration.
    I’m enjoying your note beside the bath because I never have a bath when I’m suffering symptoms in case I fall asleep and drown – and someone might assume I had committed suicide – because it can be depressing when one is going through a really bad phase.
    Your work must be very honest and powerful to have evoked such a response. Is the complete work posted online anywhere?
    Best Wishes

    • Hi Elizabeth.
      Thank you for your kind words. I am so sorry to hear you are also a sufferer, but so relieved that you are having a good period. It is one of the positive things about the illness is generally, the future is brighter than the present.
      The ‘half-dead’ is an accurate term for the wiped out phase of the illness. Comparisons like “a bad flu” or “days of insomnia! never quite capture the all encompassing wiped out nature.
      On a technical note, for similar reasons, I only ever have 6 inch baths, and often have to drain the bath and rest under a towel until I have enough energy to climb out. Even with seats, I could never cope with showers – heat and gravity are a difficult combination.
      I will now cease this sounding like a ME support group.
      So glad you are also making good use of your time with the OCA! I think it is a wonderful institution that means I feel I am doing something productive, and involved in the outside world whilst sitting at home.
      Hoping to provide for your amusement, the complete set of images is here – and is still being added to!

  • This debate is highlighting very polarised opinions, and opinion is very polarised over ME, so maybe the debate is reflecting this. Perhaps, therefore, it is no surprise that Sue’s work has provoked strong responses and reactions. Also, from the description, it was placed in position designed to be confrontative.
    I’m a retired Child and Adolescent Psychiatrist and have tried to help young people with ME and their families, and people with other mental health difficulties, including those who had attempted suicide.
    ME is a very complex condition and probably responds best to a multi-faceted approach with a highly collaborative relationship between all the members of the multidisciplinary team and the sufferer and their family. This is not easy to acheive. Everyone has to take responsibility for their contribution (including their personal psychological and emotional responses to the processes). Again, this is challenging for everyone.
    I wonder if there would have been a different outcome to this situation at the orthopaedic hospital if the administrators had been more collaborative in their approach to dilemma, and involved the artist and the curators in the decision? It could have been a shared decision with everyone taking responsibility for their own contribution. The reporting of the outcome would then have reflected a different process entirely, and the participants could perhaps have felt more empowered.
    Orthopoedic hospitals do certainly deal with bone conditions, which are very varied, and many people are facing life-changing events. Orthopoeadic staff are not necessarily well-trained in the management of the psychological aspects of illness, nor, in my experience, are most hospital administrators. This places their patients and them at a disadvantage and a defensive response often results when people feel uncertain.
    I was saddened to read the the Care Quality Commission (CQC) has recently released a report which found that people attending general (as opposed to psychiatric) hospitals often received a more sympathetic response from police than they did from hosital staff. It was my experience that mental illness is still poorly understood by many staff in general hospitals, due largely to a lack of training. More needs to be done to help everyone to understand how to help people suufering adversely with psychological difficulties.
    As someone who has first-hand experience as a patient as well as a professional in the field of mental ill-health, I find that engaging in a creative process is a very positive step. It helps me to “be in the moment” rather than dwelling on concerns and worries over which I have little influence.

    • ‘I wonder if there would have been a different outcome to this situation at the orthopaedic hospital if the administrators had been more collaborative in their approach to dilemma, and involved the artist and the curators in the decision?’

      I completely agree Alison – it is the unilateral exercise of power to censor Sue’s work which I find most vexing. The Hospital and readers of this blog might well disagree about the suitability of the work for display in an orthopaedic hospital, but I hope we would all agree that Sue is entitled to an explanation and some attempt to reconcile differences.

  • May I say that I have spoken directly to Gareth Dent and have agreed to clarify my earlier contribution. My OCA tutor counselled me to be careful about what I put out there in cyberspace at a time when articulating my ME was part of my therapy. It is a form of censorship, and I am at a stage where I disagree with censoring creativity and reject attempts to control what I wish to express within the parameters of OCA offensive content policy. The advice from my tutor was not perceived by me to be anti-inclusive, more about marketing and managing of public image. My bosses, however, have had exhibited gross insensitivity to my condition because it is invisible. I see I need to improve the accuracy of what I transmit in my typed messages while accepting “what is said is slippery stuff.” I merely wish to refute artistic censorship and show solidarity towards fellow M.E. sufferers. I hope this clarifies my position and thank you Gareth for being a patient listener and strong advocate of inclusion.

    • Adrian,
      I am relieved that it wasn’t the OCA who were not supportive. And so glad that Gareth was so patient. One of the frustrations with ME is being able to communicate – I find word blindness, concentration and clarity of thought all make it difficult to say what I want to. Which is where I’ve found artistic expression so helpful.
      You have touched on another interesting ME point though. Like other invisible illnesses, not only can it be ignored, but there is a point where you decide in each circumstance whether to “out yourself” as a sufferer. And that isn’t a tempting prospect in most employment circumstances. It takes bravery to confront that prejudice, and isn’t a choice to be made lightly.
      Wishing you all the best.

  • I just heard an article on the radio (BBC radio 4, Women’s Hour, 16 Jluy)) about a Canadian undergraduate art student who used ‘the venue’ in her art work. She is a photographer as well and placed her same collection of art works (which were based on menstration – so potentially a ‘difficult’ subject matter) in incredibly differing venues: in art galleries, various online platforms, differing public places. The subject she was exploring is how the art is received by the different type of viewer. Thought this might be interesting to you.

  • I have just been directed to this post from reading another so I am late into the conversation but I wanted to add a few thoughts. I am sorry to hear of your ME Sue and just from reading this I am beginning to understand what it entails.
    I have been studying how to choose venues for art and how artists are very picky as to where they will show and what they will show. They quite often (if not choosing a gallery) work with the space in mind.
    I think what The Invisible Pink …has written makes a lot of sense to me because those visiting hospitals are, in many cases, at their lowest emotional levels . I do feel though that the hospital should have screened the work beforehand so that you didn’t have to go through this. I don’t see this as black and white, good or bad but I do see this as a point where you have made an impact.
    Just the fact that the work raised so much debate, visitors were made to see it and think, discussion on this forum and maybe elsewhere occurred – means that it has been successful. If it had been written about in the papers, you would have truly arrived! Please see it as a springboard for more of the same thought-inspiring works in the future.

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