I am a musician and an artist. It’s what I do. It’s who I am. I’ve worked professionally as a singer and vocal teacher for most of my working life. As an artist, I’ve exhibited and sold ceramic work, drawings and paintings, taught art history and theory at college and university, and have won awards for my work.
When I was a kid, it became evident quite early on that I had gifts for music and art. My mother started me on piano lessons around the same time as I started school, and I have no memory of learning to read music, any more than I have of learning to read – they’re both things that just feel like I’ve always been able to do. There was a marvelous place near where we lived when I was small that had ‘stuff’ for kids to muck around with. There were kick wheels and clay, paints of all kinds, huge heavy sheets of paper, bins of timber offcuts, nails and hammers, scraps of leather and goodness only knows what else. We could make anything we wanted to, using any of the bits and pieces – it was heaven on a stick for a kid like me.
We moved interstate to a country town late in my primary (grade) school years. My piano lessons continued, and Mum had words with a woman who ran an oil painting class – for adults – at a local gallery, and they took me on even though I was only eleven or so. High school gave me access to a brand new fine art centre, and I rediscovered clay, learned about screen-printing, painted more and drew a lot. There was also an excellent music program, with a concert band and I started on clarinet, which I hated, and swapped to French Horn, which I loved, a year later. That landed me in a conservatorium after I finished school – art became a secondary thing for a while. I got conscripted into the chorus of a student opera in my second year at the Con, and then dumped into singing lessons by the head of the vocal school. Years later, I got work in the chorus of the State Opera Company in that state, and much later went on to art school, followed by an academic masters in art history.
That I have a disease that, at times – more frequently these days than otherwise – leaves me with a significant level of disability shouldn’t EVER be considered a factor in any of this – negatively or positively. There were times at art school when I was flaring that I struggled to get to upstairs studios, and would lose chalk and charcoal when my fingers gave way. It can be incredibly painful to stand and draw at an easel a lot of the time. I never told the bosses at the opera company that I had RA. They’d have probably seen me as a liability if I had, and as we were employed on a contract basis, I’d have been risking my job. The wardrobe mistress knew, and kept a pair of flat shoes for me to use whenever the costuming allowed for that. Otherwise, I just had to manage – and did, somehow, despite flares. Adrenaline is a marvelous ‘drug’. I could be struggling to get up the stairs to the wings, and then take a step out on stage, the adrenaline would kick in, and I’d feel no pain – until I stepped back into the wings again, to be caught by the stage manager as I collapsed, who also knew and helped wherever she could.
The thing is, I also didn’t want allowances made for me. I was in the opera company because my voice was good enough to sing professionally. I won awards and sold work in exhibitions because my work was judged on its merit and judged to be better than most. And that’s how I want it.
The trend of memes that Australian activist Stella Young coined ‘inspiration porn’ is something I find incredibly condescending. As are comments that what I do is somehow more special because I do it despite the challenges I face.
‘Inspiration porn’ is a term that has been coined by disabled people. It is when disabled people are referred to as ‘inspirational’ or ‘brave’ for doing ordinary things, just like non-disabled people. This issue is that it’s based on the assumption that someone with a disability has it so much worse than a non-disabled person.
In her Ted talk about this issue, I’m not your inspiration, thank you very much, Stella said we have been sold a lie; that disability is a bad thing, and to live with disability is exceptional. The constructed social environment perpetuates that lie via those memes. They objectify people with disabilities for the purpose of inspiring people without disabilities to make more of an effort and complain less about their lot – i.e. however bad my life is, it could be worse… She said that was bullshit. I agree with her. It is not exceptional that I do what I do, and continue to do it despite the growing difficulties. I do it because I must make art, and I must sing, because it’s just what I do. That I often have to push myself through pain and difficulties to achieve it has nothing to do with it – I do it because I MUST.
I was chatting on Facebook yesterday with a few people in the comments thread of a post where someone had posted another article about inspiration porn, What Is so Wrong with Inspiration Porn?. While his post was particularly focused on events in American high schools that were especially created to allow students with disabilities to participate, rather than creating more generally accessible activities for everyone to do without the focus on the disabled students, our discussion was much more personal. One of the contributors, who is in a wheelchair, mentioned that she is involved in her local community centre, and makes bears. I take my hat off to her – I don’t have the patience for that kind of fiddly work! She also mentioned that she often gets told that it’s wonderful that ‘someone like her’ gets out and does this stuff, because she’s in a wheelchair. Her feeling is that there seems to be quite a bit of surprise from these people that someone with a disability is out there achieving something, or even anything – because somehow, a significant portion of the general public appear to think that that’s just not what happens. She is justifiably pleased when someone is taken by her work, and the years of skill acquisition behind it, but that feels diminished when the reaction is tempered by their surprise. And that’s just so wrong.
Speaking for myself, because I can’t speak for others, that I have achieved what I’ve achieved is due to my talent and hard work. And having had the balls to put it out there in the public arena. For me, there is an enormous satisfaction in having achieved what I have. To have that framed within the concept that somehow it’s really special because I’d done it although I’m disabled would tarnish that. If I start to believe that, it might start to make me question whether the work had been judged on its merit, or if some concession had been made for me on the basis of my disability.
I don’t want that. I didn’t want it then. I certainly don’t want it now, when my reality is that my level of disability is now significantly more than it used to be, and making the work is that much more challenging. I have decades of my art practice behind me, and a reputation that I’ve achieved by virtue of the work itself. I want it to stay that way. I want my work to be judged ONLY on its merit. I don’t want concessions made. If it inspires people, or moves them, let that be because they read something in a piece that touches them – not because it was made by a disabled artist. Because I’m not a disabled artist. I’m an artist. An artist with a disability. But that disability makes NO difference to my actual talent or my ability to take a concept and create a physical object that is meaningful and/or beautiful.
My bottom line is that I’m just another artist trying to get work made and out there, and hopefully selling (because I need the income). That I am disabled doesn’t make me special. It just makes me an artist working through and past a particular challenge to continue getting on with the work. The more significant challenge I have with getting on making stuff is funding for materials and studio space. To be completely honest, that’s MUCH more of an issue than my gammy hands and pain levels. If I don’t have the paints, pencils and paper I need, and somewhere to work, then I REALLY can’t make any work. As long as I have those, I will continue to make work, and that’s really the most important thing. Not the disability.
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