So far I’ve talked a bit about having disabilities but how do they affect me as a musician, in terms of the work I actually create?
To answer that, I’ve put together a podcast of songs I’ve written that I consider to stem from my disabilities interspersed with my good friend Felix Hunt, who plays in one of the two bands I’m in – the Count of Chateau Noir – interviewing me about the songs and what made me write them.
This is quite an in-depth discussion and I’ve taken a decision not to edit too much to allow it to remain fairly in-depth but I realise, because of the level of detail, it may not be for everyone. But, if you are interested in songwriting or disability issues or anything like that, I think we do have an interesting discussion – especially around The Yellow Castle on the Hill.
Anyway, here it is:
Quick Footnote on the Yellow Castle on the Hill
During The Yellow Castle on the Hill – which the only one of the songs on the list that is overtly about the treatment of disability on the whole, rather than any kind of personal confessional – I talk about the history of Stoke Park Hospital in Bristol (i.e. the Yellow Castle in the song). Stoke Park was a hospital for people with learning disabilities and there is a short documentary here which is worth watching, put together by a theatre group working with people with learning disabilities on the history of the hospital. It’s a pretty powerful and damning description of the conditions in institutions for people with Learning Disabilities for much of the 20th Century and pretty much gives the whole context of the song. As a newspaper headline in this documentary says, “these are all somebody’s sons and daughters” and the conditions endured by certain human beings in this country until relatively recently are one of the great unspoken human rights issues of the 20th Century.
This is the second and final part of my interview about the medical kit I use. The Malone ACE (Antegrade Continence Enema) Procedure is a medical thing I do every one or two days to keep my bowels clear as the don’t completely open by themselves. Again, I realise this is a bit of taboo subject for a lot of people (probably including me!) but it’s also one of these things I’ve never really seen anyone talking about and, especially given this is a relatively new procedure where patients pretty much have to figure out how it works for themselves as there are few clear guidelines to follow, I thought it might be useful for some people to hear someone speaking about it:
Once again this was filmed and edited by Tom Mayne.
One of the difficulties I had when I was growing up with the medical conditions I had was that I never ever saw anybody talking about similar conditions. I think this is partly my conditions are slightly unusual but also, because they affect my bladder and bowels, I think it’s still seen as a bit unseemly to talk about such things. Going to the toilet is a very private matter and one that most people would rather not think about or talk about. And, when you do, it inevitably ends up seeming very crude or very childish.
Which is all very well and good but it does me make me think there’s probably people out there who, like me, have to use a catheter to urinate due to their medical conditions but never ever hears anyone talking about using a catheter. Similarly there are probably people who’ve seen me or someone else using one in public toilets and have questions but feel it’d be a bit wrong to ask them.
For both those reasons, I’d decided to record a short video of myself talking about using a catheter for anyone who is interested to watch. Obviously, if you do find the idea of inserting a catheter into yourself unpleasant to think about or talk about, you might choose not to watch it!
Here it is if you do want to so though. It was filmed and edited by Tom Mayne.