This post was originally published on Creaky Joints. Just recently I came across an article by or about an artist with a disability (I can't remember which) which, to my annoyance now, I didn't bookmark, and search as I may through my computer history, I can't find. I do remember feeling very annoyed at the time of reading, as the artist concerned was asking for allowances to be made for them on the grounds of their disability. While I have had to deal with particular difficulties to make my art and/or perform, and that is happening now increasingly as the disease I have* gets worse, other than accessibility to studios, I don't want to ever find myself doing that, and feeling like that reminded me that I'd written this piece.
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
this 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.
Toulouse Lautrec and Me. Acrylic on board |
Sleeping. Mixed media on paper |
Nurture. Acrylic on craft paper |
Supplication. Mixed media on paper |
*Rheumatoid arthritis. A systemic, autoimmune disease, which initially affects joints, but can also involve major organs. It is painful, degenerative, and there is no cure.
Excellent post.
ReplyDeleteThanks Rachel!
DeleteThis comment has been removed by the author.
ReplyDeletekaz;
ReplyDeleteI truly love and always have loved this wonderful blog. Your concept and writing are fantastic. I truly wish i had written it.
Thank you Rick - high praise, indeed, and I do appreciate you dropping by to comment.
DeleteGreat to hear your views on a topic that plagues me and friends of mine almost every time we venture out in public.
ReplyDeleteMaybe it is the way your friend describes her situation, but I cannot stand the term "in a wheelchair". I find it offensive. It takes the focus away from a whole person - I am certain your friend is not glued to that wheelchair 24/7. I prefer the term "wheelchair user" because I am a person first who happens to use a wheelchair to aid mobility and the use of that chair gives me freedom and independence - it is a benefit and shouldn't be seen as some reason for pity or as some sort of restriction - on the contrary, wheelchairs can reduce the restrictions of our disabilities and grant more freedom and choice. "Wheelchair user" has more accurate and positive connotations than "in a wheelchair" or worse "wheelchair-bound". I know you,as a writer, will be able to appreciate the power words can have and I appeal to everyone to think carefully about their choice of words.
You have explained so well how 'inspiration porn' devalues our whole selves as fellow human beings and even though I suffer a chronic illness and use mobility aids, while I am not having the easiest life out there, I am still enjoying a good life as I perceive it. I have a happy family, a safe home and roof over my head, food in the pantry and a good support system. I have no debts and don't live in fear. I participate in community life and contribute to society. Who is to judge the criteria to define a good or bad life anyway? How dare anyone say that my life is any worse (i.e. less valuable or worthy) than anyone else's on the basis of disability?
Thanks for a well-written and well-explained post on this subject. Vent over. :-)
It's something that's been raising my ire for some time, Jodie, and I had to write about it in the end. Unexpectedly, one of the things that really prompted me to put words down was an invitation from someone to participate in an exhibition of work by 'disabled artists' that was being run to 'raise awareness' ... That really got to me, for reasons that will be obvious in what I ended up writing. An exhibition of work had to be run to highlight that disabled people are capable of creative work? Really? Personally, I don't think that that is doing ANY of those artists any favours.
DeleteOn the words - yes, I totally get it. I use a stick now and again, which makes me immediately visible, and signals a problem - but the stick makes things possible on those days that maybe wouldn't be, so I don't see it as a negative thing. As it happens, this morning, I commented on a post in a Facebook support group where the original poster had written that she'd given in and used a wheelchair so she could take her kids to an all day function. I couldn't help myself - and commented that she HADN'T given in, from my perspective. What she'd done, as far as I could see, was make a judgement call about what would make that day out possible and enjoyable for everyone - and as it turns out, they all had a fabulous day. So, that's a success story, as far as I can see. We'd none of us hesitate to slap a bandaid on a bleeding cut - wheelchairs, mobility scooters, sticks etc, they're the bandaids of people with mobility issues...and that's how they should be seen, by those who may need them as well as the rest of the community.
Perhaps I have another post to write...LOL!