May 2014. This blog was written by Mark Ware and published by the Stroke Association for Action on Stroke Month 2014 Science Stroke Art 2014:
Do you like what you see?
On 2nd May 2014 at The University of Manchester, as part of Science Stroke Art 2014, I gave a talk about my art since having a stroke, followed by a screening of my video composition entitled, The Dog that Barked like a Bird, followed by a Q&A session. I rarely give talks about my stroke and this was the first time I’ve spoken in any detail about The Dog that Barked like a Bird, an Arts Council England funded video composition based on a diary I kept after having a severe stroke in 1996 at the age of 39. For me, the Q&A session was the most interesting part of this event (as I’ve seen the video composition and heard my talk before!) It was good to hear about other stroke survivor and carer experiences. It was also valuable to receive feedback about my art and my experiences post-stroke.
Two questions in particular remain with me. Someone in the audience referred to the imagery in the video composition that shows me crawling along a floor (see above). It represented a time when I couldn’t walk because of my stroke and so I had to crawl about my home on my hands and knees instead. The two questions I was asked were:
1. Do I try to disguise my disability when I’m in the company of others?
2. How are other people supposed to cope or respond when they see me crawling around (as stroke is such an unfamiliar condition to most people)?
Questions of this type frequently crop up in relation to a wide range of disabilities. The answer to question 1 is simple: I only reveal the true extent of my disability to a few people who are very close to me, understand my condition, and accept who I am. I refer to these people as being within the ‘inner circle’. I fully understand that many people aren’t familiar with stroke and may not be exposed to disability on a daily basis. Therefore I can’t expect everyone to understand the situation I find myself in.
Over the years since my stroke, a few people have referred to me as ‘brave’ because of the way I deal with my disability. I’m not brave at all. I wasn’t given a choice. No one came up to me and said:‘You have two options. You can walk to the South Pole or…have a stroke. Which one would you like to choose?’ No, I’m not brave. I simply have to accept my disability and the challenges it presents me with. I din’t have a choice. If I had had a choice I would have gone to the South Pole.
Although Government would like us to believe otherwise, we live in a society that tends to hide away disability, or that occasionally portrays people with disabilities as ‘scroungers’ and a burden to society. Strangely, at the same time, once in a while people with disabilities are held up as great role models, as was the case during the Paralympics. The reality is that not all disabled people are paralympians. Nor are all disabled people benefit cheats. The truth is far more boring. My disability results in the daily need to plan and prepare for even the simplest of tasks, even brushing my teeth. I don’t need sympathy, but understanding is helpful (the answer to question 2). Understanding that I do my best. That if I’m seen crawling across the floor, it’s due to my disability and my inability to walk, not something designed to make people feel uncomfortable (or an attempt to obtain benefits).
If the general public is fed misleading or inadequate information about disability, it’s no wonder that public responses are occasionally misjudged or ill-informed and in that respect it’s not surprising that many people don’t understand stroke, or know how to respond to people who have had a stroke.
In addition to funding stroke research, The Stroke Association plays a vitally important role in raising awareness of stroke with an emphasis on the person as well as the condition. Its employees and volunteers do a remarkable job in helping stroke survivors discover that there is life after stroke and they should feel a great sense of pride in the incredibly valuable work they do. Most people are touched by stroke either directly or indirectly during their lives and yet there is still a need to raise awareness of this condition and the dramatic life-changing impact it can have on people’s lives. If you don’t do so already, please try to support charity’s efforts to create a wider understanding of stroke.