But you just press a button don't you?

As more and more people have access to cameras there are more opportunities than ever to take photographs which is wonderful.  The down side is that people assume this is the way all photos are created, in two seconds and with the click of the button.  This is why so many people believe that photography cannot possibly be art, can it!

I thought I would write this article to explain a little about the process of putting together just one image in the Rare Beauty series.  The idea for Rare Beauty came to me around 2 years ago.  Having spent so much time in hospitals with my youngest son, Isaac who has a rare disease, I knew only too well how sterile and scary these settings could be.  I wanted to encourage people to want to know a little abut the people who have rare diseases and also to appreciate that the impact of these conditions is far wider than just the individual involved.  The difficulty was to bridge that gap and encourage people who had no idea about rare diseases to want to know more and to ask questions.

I can’t remember exactly what made me marry together the idea of beauty and the hospital setting but I just knew that people turned away from images that were distressing.  Once I had the seed of an idea I needed to get a clear idea in my head of what the images would look like.  I like to be able to visualise as much of the images as possible so this meant spending hours and hours researching.  At the beginning of a project there are so many questions that need to be answered before even thinking about taking a photograph, not least who would be in the images and where would it take place.  I often like to do a test shot that allows me to get a clear idea that will set the scene for the rest of the project.  This test shot is important on many levels as not only will it let me turn an idea into an actual photograph but it also gives me something tangible that can be used to secure funding in order to carry out the project on a wider scale. 

Over the years we have built some really close friendships with people who are equally passionate about rare diseases.  One such person is Isaac’s plastic surgeon, Dr Fattah.  He has been amazingly supportive over the last few years and so he immediately came to mind for the test shot.  One place that people often feel incredibly anxious about is the operating theatre and as such it seemed like the natural place to start with a test shot.  It is somewhere that many people with rare diseases find themselves and is often seen as scary, sterile and unknown.  Having an idea and putting it into practice is not necessarily straightforward but working with people who are excited by an idea is half the battle.  I called Dr Fattah and explained what I wanted to do.  He loved the idea and offered to help as much as he could.  I put my request in writing and this started the ball rolling so that he could then forward it to his colleagues at Alder Hey Children’s Hospital.  From starting with an idea to taking the test photo took 6 months.  It was an amazing opportunity to be given access to the operating theatre and the photo we created was far better than I had dreamed.  Once I had the test image and had created the portraits and interviewed the participants my idea started to take shape.  I knew that the concept would work in practice and could now source funding.  The actual sourcing of funding is a whole other story but we are incredibly grateful to the organisations who have had enough faith in our concepts to provide us with the resources we need to take a project from concept to reality.

Rare Beauty operating theatre s.jpg

With the test shot completed, funding in place I now had to start the process again in terms of location sourcing, identifying the people with rare diseases to take part along with the staff and ultimately creating the story I wanted to tell through the images.  For some time I had wanted to work on a project with Dr Larissa Kerecuk from Birmingham Children’s Hospital as she is a truly inspirational doctor.  Dr Kerecuk is the Rare Disease Lead for the hospital and as such she was also happy to work with me on this project because she recognised the importance of raising awareness of the impact rare diseases has on the wider community.  The logistical difficulties created by the location caused many issues not least because we are based a 4 hour round trip away.  I had a clear idea for one of the first images, as I wanted to start the project with another operating theatre scene, but this time in Birmingham Children’s Hospital and with a general surgeon.  Dr Kerecuk helped us identify the rare disease patient and the medical staff who kindly agreed to participate.  I was sent images of each person to help me work out clothing and visualise how the scene would play out and was briefed on the background story.  Having chatted with Dr Kerecuk and her lead nurse in advance we knew which stories were important to cover and this helped with the patient identification.  For this scene we were working with Olivia and her mother.  She was 17 at the time the photograph took place and had an undiagnosed condition that had meant she was extremely poorly.  She had undergone many operations and was unable to take any liquid or food orally.  Her extremely complex condition meant she had a very strong bond with her medical team and as such her surgeon had readily agreed to take part too. 

Most images we would be taking were complicated by the fact it was a working hospital, and a very busy one at that, that was 2 hours away from where we were based.  We also had to work with minimal equipment and lighting due to the environment and also a lack of parking close to the hospital added to the difficulty.  With an extremely tight timescale we knew we would be going to have an incredibly busy day in Birmingham.  We had planned the schedule to allow us to photograph the operating theatre scene, take portraits images of those involved against my portable black backdrop and complete video interviews.  We had also agreed to meet the grant funder’s PR staff who was travelling down from Manchester specifically to meet with us.  We had a 3 ½ hour window to complete it all as the nurse had come in from work before her shift and the surgeon had come in on his day off.  Olivia also had to take her medication and we could not keep her too long as the process would be exhausting for her.  It was the first day of photographing and as such we knew it would be difficult but had tried to plan it as much as we could.  We had been allocated an operating theatre, everyone knew what time we were starting and the image I wanted was firmly implanted in my head.  This is where best laid plans ensure you can really think on your feet.

Tim, my assistant, and I set off for Birmingham at 7am allowing us 2 hours to get to the hospital and still have an hour and half in hand to get set up and gather our thoughts.  Typically traffic was horrendous and our journey was far from straightforward and so it took over 2 ½ hours.  Parking at the hospital is notoriously bad and so we had to carry a huge amount of equipment from the nearest car park (which believe me is not near).  Even with our slimmed down kit there is backing paper, tripods, camera’s, lighting and clothing weighing us down.  Both Dr Kerecuk and the nurse who had been assisting us were in meetings when we arrived and so we made our way to the operating theatres.  Our extra time allowed had disappeared and so it was time to meet up with the team who were in the photograph, including Olivia, her mum, the surgeon and the scrub nurse.  It was at this point our first difficulty (and possibly the most stressful) arose, the operating theatre we had been allocated was in use because a trauma patient had come in and there was not likely to be another theatre free all day.  The senior nurse in charge suggested we could use the resus room but as this was a busy area and had patients coming through it who were extremely poorly it just was not an option.  Looking around I also could not see how it could work from a photographic perspective.  Everyone looked at me for an answer and I knew that we had to find a solution and fast.  I spoke to the nurse in charge again and she kindly offered to search for another location for us based on the type of scene we were trying to create.  Whilst she was looking I received a phone call that increased my stress levels further. 

The day before I had waved off one of our exhibitions as it was travelling to Switzerland to highlight Rare Disease Day.  It was due to arrive on the day of our photo shoot and was to be set up for an exhibition the next day and for the subsequent week.  The customs in Germany were refusing to allow the driver through the border into Switzerland without an Eori number.  An Eori number is required when exporting goods outside the EU but we had not been asked to provide this.  The customs official said I had to provide this number before the driver could continue.  To get this number you have to complete documents on the HMRC website but I had no access to my files, I had a team of people waiting for me and the only other person who could help was tied up in a meeting for the next few hours.  I made several stressful calls and just had to continue with the work in hand knowing that some poor courier was sat waiting with the exhibition until we could complete the paperwork.  I was also very much aware that the exhibition had to reach its destination that evening if it was to be in place for the event the next day.

A room was located and whilst it was nothing like an operating room I looked around and tried to visualise a way that we could feasibly make it work.  It was difficult because the whole scene had to be changed and we had to move some items out of the room to make way for a bed and also we had to borrow additional equipment from another location to make the scene work.  It never ceases to amaze me how kind and helpful people are during our photo shoots.  The whole team worked together to ensure we could completely change the scene and still create an image that would allow us to tell the story whilst doing so in an extremely busy environment.  Working in a very hot and cramped space we set the lights up and finally pressed the button on the camera to capture the image.  Some 24 months after the initial idea started to form and many hours of research and hard work allowed us to capture the images to tell Olivia’s story.

Rare Beauty Olivia.jpg

As soon as the scene images were captured we had to race to another location in the hospital and set up a studio background and lighting to allow me to take the portraits and carry out the video interviews.  Because it is a working hospital we were again faced with a room that had been allocated but was then needed as a treatment room and so after further searching we set up a temporary studio.  In the meantime, I had received several more phone calls from customs and urgently needed to address that issue whilst also being aware I had a meeting with the PR from the grant organisation who was sat waiting to meet with me.  To say the stress levels were high was an understatement and thankfully an Eori number was finally given to customs and the temporary studio was in place to allow me to complete the images and interview.  Later in the day we had to start the process again as we had planned on completing two scenes that day.  When we finally left Birmingham much later that evening to start the 2 hours journey (that became 3) home we were utterly exhausted and knew there would be man hours of transcribing the video interviews and processing the images left to do in the coming days.  We also had many other scenes to plan and carry out to complete the Rare Beauty series.  I wouldn’t change a thing though as I feel incredibly privileged that we are allowed into people’s lives and they trust us with their stories.  Whether you think photography is art or not I hope this snapshot into our day helps to demonstrate just how much work can sometimes go into creating just one image.

You can see the images created for Rare Beauty and read the stories here.

Ceridwen HughesComment