Cluelessly I question, when did care become a commodity?

One week until Rare Disease Day 2024!

It is a perfect summer’s evening in December 2022. Although apprehensive of being in a crowd, Jess and I eagerly queue to enter the forecourt of the Sydney Opera House. I’ve been waiting for this night for months. Jack Johnson, one of my all-time favourite musicians, is performing an open-air concert. Earlier performances in the week had been cancelled due to storms, but we were treated to a breathing taking sunset framing one of the world’s most iconic harbour views. The concert was held a few days before my birthday, so we had made the trip up to Sydney as a special birthday getaway. I grew up listening to Jack Johnson’s music, in particular his second studio album On and On released in 2003 which I listened to well… on and on. Track four of the album, titled Taylor, has a stanza that opens with Well, Peter Patrick pitter-patters on the window. I have a fondness for alliteration, which is defined as the occurrence of the same letter or sound at the beginning of adjacent or closely connected words. Peter Patrick pitter-patters.

I still listen to On and On regularly. Not necessarily because of its clever use of alliteration (although it always makes me smile) — but because many of Jack Johnson’s songs juxtapose relaxed and smoothing acoustics with hard-hitting social commentary. The songs are thoughtful and reflective and as a result the album stands in stark contrast to the sea of shallow, repetitive and thoughtless music that is being churned out by the music industry. In my first year as a graduate graphic designer, one of the directors of the studio I was working for said something along the lines of ‘you can design on trend and it will last a season — or you can anchor your design to a fundamental idea and it will never age’.

One of the fundamental ideas of Running Rare is that Australian’s living with a rare disease are not being treated equally by our healthcare system. My immediate urge is to delete the previous sentence. To avoid conflict, or anything that might offend someone. However, about a year ago, inspired by Jess’ slam poetry lessons for her year 5 class, I attempted to write my own alliterated free verse on the topic. I found putting my ideas into a format, such as a poem, helped to liberate me to explore this idea further and to say things I would otherwise struggle to voice. I titled this poem Cluelessly I question, when did care become a commodity? With Rare Disease Day next week I thought it fitting to finally publish this poem.

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My life co-exists with a chronic condition
with no known cause that knows no end.
I used to live a life that was care-less, care-free,
care-only-for-what-I-could-be.
Now every choice I make is critically curated:
crossed-checked, rearranged
and closely calculated.

Conflicting contrasts contaminate.
I am called both client and consumer
by a clinical world that has lost connection with their true calling.
Out-of-touch,
out-of-date,
out-of-mind
they’ve forgotten their mandate to the complicated, confusing, confounding and complex.
It is hard to create change for a minority,
when you’re convincing those who count votes to work with those who concentrate on compounding profits.
A conflict arises,
because neither will be found in abundance within this close-connected community that we call rare.

Continually it is communicated that care is only for the common,
those that can comply to the code, those whose name is known.
For the uncommon, care is caged behind bureaucracy,
only offered on compassionate grounds.
Cluelessly I question, when did care become a commodity?

Let me communicate even more clearly
Let me put aside the clever sentence constructs.
Let me communicate concisely.

Today is the day for change.