Disability, science and art, and more

Last week saw me taking part in a scoping study for a Disability Science and Art project. It was an interesting experience, partly because of my ambiguity to the concept of Disability Art – I am not at all sure that we benefit from isolating disability art from mainstream art. But that aside, it was interesting to hear the views of those there (and read others expressed on the blog) on their attitudes to science. I hadn’t really appreciated that I am much more affiliated to the science community than to the disabled community, largely because I was already some way down the line of becoming a scientist when I became disabled (assuming mobility is the key factor here – more on that later!).

From those at the meeting it seems that their views on science are heavily influenced by the medical profession, and here the experiences were largely negative. As I explained, my experience was quite different. There were parallels in some of the earlier meetings I had, before I secured a referral to David Burns at the RVI in Newcastle and then on to Prof Quinn at the Institute of Neurology and Neurosurgery. By the time I met Prof Quinn I was aware I had a relatively new disorder with no know cure, and that from here on in, treatment was going to be largely experimental. My six monthly visits to the Institute were a learning process for both myself and the specialists, and sometimes for groups of medical students. My interest and background in science made me a good test subject, and I felt that I was rewarded for my time with open and honest conversations with world-leading experts.

It’s only on reflection that I realise what a frightening experience it could have been. In the trials I did undertake, I felt in control and able to say no to treatments I felt to be extreme and/or unnecessary, and also in a position to make those evaluations – for example the option of selective peripheral denervation. The net result is that I have always felt in control of my condition, or at least as much as anyone could be.

I was also reflecting on how my science background influenced my own acceptance of illness. I think some of the harder factors to come to terms with were those that contradicted my experience of science – an illness that was seemingly irrational, unpredictable, with no apparent cause. As mentioned above, it didn’t start with mobility problems but with my speech when I was about 7. Subsequently writing became difficult, there was a short period when I had a slight limp, which I now know was caused by dystonic spasms, and finally (the symptom that led to diagnosis) the torticollis that set in when I was 21. For me that was the worst symptom, and there was a period where I truly thought I was going mad, unable to straighten my head but otherwise nothing else was wrong.

So I will be very interested to see how it goes, what I learn about myself but also whether it will help other disabled people in understanding more about their own conditions by understanding the scientific process. I would love to be able to use my experience and this project to develop better relationships between disabled people and their specialists, by informing both sides about the perceptions, misconceptions and stereotypes. Watch this space…