Mobility, the body and new thinking

In an interview in The Dark Horse, the poet Karl Knights who lives with Cerebral Palsy, spoke about his disability saying that as a young man, “I resented being told I should write about my hospital experiences … I wrapped my disability in imagery and metaphors,” and that the difficulty with films like My Left Foot is that they had a tendency to vacillate between the disabled experience as “inspiration porn or an object to be pitied.” It is easier to picture a time when our bodies were not impeded before a “one day” moment when we crossed an invisible threshold into a newly-disabled state. The stories we tell about people who do have a disability also tend to follow this narrative thread in order to notionally offer some understanding as to how someone else’s life experience is different from our own. This however does lead to exactly what Karl Knights is talking about here, an understanding that is framed either voyeuristically, or through the lens of pity. This isn’t to negate the evidently intrinsic value of communicating disability and the disabled experience to others, but rather to productively try and encourage a change in perception such that we see disability not simply as “one day” event but as a continuation. Further, it’s valuable to think about disability as not as something an individual is, but rather what they experience in both society and the built environment and advocate for change in both. We ought to see not the impediment, but how people are impeded.

As we age, the effects of our decline in health become increasingly apparent as the body’s ability to heal itself slowly erodes. At the same time we are put in the position of every other person in society who has been experiencing disability up until this point. We have to tirelessly advocate for our position. Even a simple journey to and from the local high street can be so full of barriers that the majority of us don’t think about that it can lead to lack of exercise, isolation, depression and a steep decline in our mental and physical health. It’s an important question to ask: when was the last time you saw someone using a walking frame or a wheelchair at your local generic brand newsagents? That simple lack of forethought to the design of a space can suddenly sever what had been a long local friendship and a lifeline to the community. These are the sorts of questions to consider when thinking about mobility and these increasingly come to the fore as we age. Far from being a backwaters cause, ONS statistics show we had “1.7 million people aged 85 years and over” in mid-2020, making up 2.5% of the UK population. By mid-2045, this is projected to increase and nearly double to “3.1 million, representing 4.3% of the total UK population.” It’s worth considering too that according to Age UK 2.6 million people aged 50 or over are currently unable to get care. The statistics alone show that the number of retirement homes will need to rise to meet demand and that public spaces will increasingly need to be made age-friendly either by retrofit or design. Public Health South Tees have shared data with us showing that 38% of the over 50s population lives with a disability which is 4% above that of the national average. 47% are considered to be in “poor health” compared, again, to a national average of 41%.

When considering where mobility sits within this in the context of our project, for all three groups, the mobility requirements are very different. In our first group, at Senses, a handful of service users require wheelchairs. To provide activities in the communal space and therefore reduce any appearance of a barrier between participants (regardless of their access requirements) comes with its own set of discreet challenges. Not everyone wants to take part, some people would like to have their lunch and a cup of tea and just talk. As a drop-in workshop leader, you can be interfering with valuable social catch-up time. Wherever possible, I used large print on my handouts and frequently, I found myself writing out simplified versions of instructions in large handwriting to ensure they felt personal and easy to grapple with. The more I incorporated small physical elements like collaging or papercraft, the more people felt invited and able to engage. In the final workshop with the group at the White House in Marske, I sat in the middle of a table and began crafting butterflies and gradually, intrigued, more people joined in. It is a low impact activity that works well for those who are experiencing frailty and mobility issues driven by factors including loneliness and social isolation, malnutrition, dementia, musculoskeletal issues and multiple long term conditions.

Sarah Hesketh is a poet who has been working with questions around care for the past 20 years. Sarah is also managing editor of Modern Poetry in Translation as well as being at the helm along with Dina Roe of the Poetry By Carers Project. Along with Jennifer Essex, Sarah was an artist in residence at Age Concern back in 2014. She wrote about her first experiences working in this new domain:

To begin with, I felt at a real disadvantage compared to some of my fellow artists. Dance or painting — these were activities that already happened regularly in the centres we were visiting. People were comfortable with the idea of them, and they seemed to offer more obvious ways to get to know people. Poetry isn’t the most popular topic at the best of times, and for the residents I was working with, language was something difficult; something they now had to fight with; something, even, to be afraid of.

Sarah Hesketh – Where the Heart Is

This echoes my own experiences. I frequently found myself switching roles between scribe and interviewer, sounding board, teacher, chronicler and ambassador. Participants especially enjoyed having a kind of poetry takeaway relationship, whereby I would take their experiences and convert these into poems that they could then take home with them. This served as a starting place to develop creativity and new work of their own. Even beginning with something as small as haikube dice, drove participants to bring in (often sheafs!) of their own new creative work.

In terms of artistic intervention, this confidence and connection borne out of creating work communally and seeing their words brought to life is something that I feel as though we had only really begun to do and I would strongly hope to see longer and sustained artistic interventions in this area in the future.