Disability Arts Online

You mentioned your own heart condition – when that emerged, how did it change things for you? You are clearly determined, political and extremely active – did it change how you saw yourself or how others saw you?

There is something about finding out that your heart doesn't work properly which is deeply undermining. I've talked to other people with various heart conditions and many of them say exactly the same thing. It's like having an unpredictable bomb inside you which could go off at any moment.

I directed a show with Taffy Thomas, the Cumbria- based story teller, called Take These Chains - which Taffy wrote about his own experience of having a lifelong heart condition and a major stroke in early middle age - he expresses so well exactly how it feels. I had no idea that there was anything wrong until I was well into my thirties, so I didn’t have the childhood experiences so many of my disabled friends and colleagues described to me of people regarding me as disabled, of special schools or teenage bullying.

The first time I had an episode, years ago, it came completely out of the blue (although apparently a classic scenario for an inhereted condition like mine which often doesn’t show until your mid 30s - I was 37) and was ridiculously dramatic. We were waiting for an Arts Council team to turn up from London and carry out a major appraisal. As they walked in, I collapsed and was hustled out and the rumour ran round the small Yorkshire arts network that I had had a heart attack - completely untrue but a great story!! The minute I was back on my feet I felt I had to show people I was just as capable as before. The arts can be a macho business, particularly if you are in a managerial role. However the reality is that I do have to take things more slowly (although slowly for me, as people have pointed out, is actually probably pretty normal for other people as I’m generally working on three or four projects at once).

But there’s no doubt I lost a lot of confidence - could I trust my body to do what I wanted? Could I still do all the things I used to? Should I take lots of medication 'in case', Should I change the way I live? The cardiologist suggested meditation as an alternative to beta blockers. Well I tried - a bit. But you are always wondering when it will happen again and there is no getting away from the fact that it is immensely frustrating - there are just some things I haven’t got the stamina to do. I am frequently very tired, catch every bug going and keep it for twice as long as everyone else and when I have an episode, which isn’t very often, my blood pressure tends to plummet and I can’t stand up – I just have to lie around watching day time TV until it all goes back to normal. It has inevitably changed my life - but it many ways it was the trigger which has enabled me to focus on a world outside the theatre. I doubt I would have helped build an arts centre in my home town without it, or be running a literature festival.

When I tell people, it’s often more for their protection than for mine. If I am working with someone, it’s only fair that they know, just in case something happens, but then I have always been a great ‘assess the situation and plan for the worst’ person. I make sure I explain that all it means is that I get tired more quickly than they would and that I try not to get too stressed (a contradiction in terms of course for all of us working in the arts) but other than that, they probably won’t see a difference.

I think most people forget about it fairly quickly, because there are no visible signs but there are some people who will insist on asking you in a meaningful way every time you see them ‘How ARE you, no really, are you OK?’ and throwing sympathetic looks in your direction. Which drives me to ‘care rage’! It has made me acutely aware of how it could be to have the kind of impairment where everyone treats you like that all the time - and it’s really strengthened my resolve to say ‘we can offer this, let me know if there’s anything you need’ - and then leave people to it. I go to salsa classes and I always warn the teachers I’ll be dropping out for a rest now and then (mainly so they don’t think I hate their session or am a lazy slob who can’t be bothered). Some of them are fine, others go into unspoken panic, and treat me as if I might break at any moment and watch me intently for signs of collapse.

The people I work with are great. They leave me to get on with it but are incredibly flexible if, say, I need to change a meeting to another day because I am particularly tired. The Ilkley Literature Festival board have been very supportive about bringing in Assistant Directors who work with me during the Festival so that I don’t have to do all those early mornings, late nights and daytime events alongside weekends and evenings. The result is we have been described as one of the best run literary festivals in the country with someone always on hand to offer a cup of tea. And by and large, despite all the pressure, as a team we don’t do stress - which has to be good for everyone.