Tuesday, 19 May 2015

I am a disabled musician.

When I'm not grumbling on the Internet or attending a plethora of medical appointments to discuss all the ways in which I am a mutant, I'm also a musician. I sing (solo and in choirs), I play the piano, and I "play" the guitar. These are the things that give me the greatest pleasure in life. I make music in a variety of styles, from folk to classical to punk, and I consume live music whenever I can.

Making music with EDS is not without its challenges, many of which I've only recently recognised and begun to navigate. First, and perhaps most obviously, I can't stand up for long periods of time. I persevered with it until early last year, when I had to leave a gig I'd been really looking forward to because I was in so much pain. Choral concerts are agony - in April, my choir did three concerts in three weeks, and it took me almost three more to fully recover. The other day, I had to leave rehearsals earlier when the weak muscles in my lower back refused to support the weight of my upper body. My solo efforts as a classical singer have been put on hold.

There's also the not inconsiderable problem that my fingers dislocate - most noticeably the pinky finger of my left hand, which has subluxed consistently since I was a child and baffled all of my piano teachers. More recently, my fingers and wrists have become more unstable and painful, and in combination with the need to sit upright in order to play, my music practice has been substantially limited.

In autumn/winter 2009, I was a member of a choir that required all black as concert attire. In a church, this is generally not a problem, but in a concert hall with strong lights pointing at the stage, where you're surrounded by 49 people who are also wearing black, you start to swelter pretty quickly. For large scale choral works, you also spend a lot of time sitting or standing very still. This meant that I ended quite a few concerts not singing and instead concentrating very hard on staying conscious. I changed my concert dress slightly and thought nothing of it for a while until last year, when the blackouts started coming back and my amazing fount-of-information friend suggested I might have some manner of autonomic dysfunction. If you attend one of my choral concerts and notice that I'm swaying, frowning, and not singing, you'll know I'm about to pass out.

It's not all doom and gloom. I'm certainly not about to give these things up, because my life would essentially be pointless without them. But thanks to renewed input from friends and clinicians, I'm starting to make and ask for adjustments that will hopefully get me back up to the standard I have always aspired to. My current singing teacher is also a yoga teacher, an anatomist, and I suspect that she may also spend evenings wearing a cape and fighting crime, and she's helping me build a practice regime that will strengthen my core as well as developing my technique. My choir have been very supportive in allowing me to stretch at intervals during rehearsals, leave early if the pain gets too bad, and look into acquiring a high chair I can use for concerts. I've got myself some finger splints, and I'm hoping they'll help me practice without pain until I've found out how to strengthen my fingers.

None of these are things I'd have discovered without input from peers, or some degree of research or initiative on my part. What I'd most like to see in music teaching as time goes on is a greater drive to increase access on the part of teachers and professional musicians to make music accessible and to make disabled musicians visible. Fortunately, there are people and organisations working on this right now, and I'd like to take this opportunity to give a shout out to Drake Music, who do incredible work researching and creating assistive technology, as well as providing sessions for disabled musicians and outreach sessions for musicians, friends, families and teachers who might want to help their relatives, friends or peers to play.

I'd love to hear from other musicians whose playing is impacted by EDS, and of course from people who are doing education and outreach work in the UK and beyond. Comment here, or tweet me @theviciouspixie, and let's chat. Tell me about your projects!

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