Mid week through a period of scripting and storyboarding, and it strikes me just how many of the first person accounts and stories by people living with Parkinson’s involve lack of understanding within the medical field and among the public. Having worked for Parkinson’s UK for the best part of two years, I was of course aware of this to a degree, but during a process so intensely involved in first person testimony, it is felt all the more keenly.
Despite great strides in the area of diagnosis, it continues to be tricky seeing as there doesn’t appear to be any one test that determines someone has the disease for certain. The symptoms can differ from patient to patient and can share some aspects in common with other conditions. But, as with most diseases, there are a selection of factors that combine to make up a typical case, including someone’s age.
Unfortunately for many younger people with Parkinson’s that can have the adverse effect of dissuading doctors and the public alike that someone does indeed have that condition, which in turn sets them on a long, difficult journey of mis-diagnosis, lack of care and misunderstanding in social settings.
So many accounts include some kind of interaction – some aggressive – where a member of the public, the police or some kind of official has misinterpreted the tremor, shuffled walk and slurred speech as signs of someone under the influence of alcohol. As one person with Parkinson’s – who was followed to his car by two people asking him whether it was a good idea for him to drive – put it, this has multiple effects. It exhibits a level of care and attention that is in part appreciated and respected but leaves the person with Parkinson’s feeling embarrassed, demeaned and depressed.
This is a specific example, but most if not all of the stories we have heard describe a combination of practical and social repercussions. Taking the tremor alone, there is a huge list of everyday activities and tasks that become infuriating and sometimes impossible to negotiate. Put those in a full lecture hall or on a busy street or in a crowded train and as well as the practical issues, you are suddenly faced with all kinds of social ones too.
On a very small scale during our recent meeting with the wider creative team, sampling and testing some early designs, I attempted to put myself in that position albeit temporarily. (See pictures in previous blog) While wearing a glove with an inbuilt spinning counterweight, I attempted to write my name or drink a glass of water, and found myself both hugely frustrated by my inability to complete the task and embarrassed that this should be witnessed by others. Unlike those with Parkinson’s, I could, of course, at any point turn off or remove the glove.
The combination of hearing and witnessing all these first person perspectives, and experiencing an essence of what it might feel like to have a tremor has confirmed a few things for us in terms of what we can use this experience to do and how we, as theatre makers specifically, can contribute to that. While this will be a simulation of sorts, we are not creating a computer game or a theme ride. Inspired by a range of human stories, we are putting people in the shoes of someone who has a condition, someone who has a story to tell, someone who boasts a life that was fundamentally altered by their diagnosis. We could therefore use this experience to potentially dispel myths, and challenge conceptions of how a person with Parkinson’s may appear, both in terms of their demographic and their symptoms.
With this in mind, it is our aim to make something that might be used in a range of settings with a variety of educational objectives, using the pilot stage to explore audiences’ reactions in contexts such as at the Edinburgh Festival, the Science Museum, among medical students and as part of relevant charity awareness drives.
We don’t know yet whether it is even possible to create one experience that could interact with and achieve the demands of audiences at all these forums. Based on this – and bearing in mind the varying demands of a short sharp science exhibit to suit large numbers of waiting participants versus the typically story-driven theatre audience who arguably may desire something substantial enough to enable an emotional journey – we are planning to investigate two different versions of the same experience: one of 5 and one of 10 minutes. We intend to test both in as many of the mentioned platforms as possible and are open to all and any surprises that might emerge. Assumptions, after all as illustrated by the many accounts of people with Parkinson’s, can create huge misunderstandings.