Creating with a disabled body in a perfectionist world

Disabled artists are not broken versions of abled artists. We simply create differently, with different pacing and limitations. We need to shift the idea of perfection.

My new single is out! It’s called Salem and is a song for those of us who’ve been disbelieved, disrespected and mistreated for being sick. Listen and read more here • On Friday the 13th my next single will drop. It’s called There Are No More Heroes and is a song about the world giving up on us (but it’s also full of hope).

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Photo by Alexas_Fotos on Unsplash

When I released my debut single, Salem, I was flooded with positive comments about the song. People thought it was beautiful, raw, haunting, vulnerable and so forth. I loved hearing and reading all these wonderful comments. Salem was even picked up by a radio station in Munich who loved the song so much they chose to play it. I was basking in confidence and I felt like those days where I didn’t feel good enough, or didn’t feel like I had the right to play music, because I couldn’t practice everyday (well… not at all actually), were over.

But then someone from my own patient community criticised my flute on the song and said I should either fix it or leave it out entirely. Yikes! If I was secure in my flute playing, this would not have affected me much, but I’m not and her comment completely floored me — all the other hundreds of positive comments were negated in an instance.

I went right back into that space where I wasn’t good enough, where I wasn’t a real musician because I can’t practice or even just play a whole song at a time, where I believe that I shouldn’t be making music because I can’t do it perfectly.

It took away my sleep and sanity for a bit. I stayed up all night watching YouTube videos about how to handle criticism (the main takeaway was to ignore it), but none of it was helping.

I kept thinking to myself: But I am not good enough! I couldn’t practice, I couldn’t play the flute piece several times and once more with feeling, and get critiqued and play it again. I could play it once, with a flute that wasn’t warmed up, lying in bed, my arms propped up by yoga blocks, unable to move around and be flexible with my embouchure and posture. Of course it’s never going to be a perfect flute.

And then it hit me: I’m being judged as if I were an able-bodied person, through the lens of a perfectionistic world, which centres technical precision over expression or authenticity. We live in a world of auto-tuners and filters and whatnot that gives the illusion of perfection.

I asked my friend what she thought of the flute and she said: “What a beautiful song. Tears cascaded down my cheeks. It’s so raw. And the flute is exactly as it should be.”

And I have always felt the same, the flute is raw, it’s vulnerable, it shakes, as it should do, because it’s a flute and the sound comes from my breath, which is raw and vulnerable and shaky and unstable as I live with chronic illness. I want people to hear that the music comes from a sick person, living in an imperfect body. It’s part of the story.

Able-bodied perfectionism demands consistency in practice, lots of energy, cognitive clarity, physical strength — we often speak of music or arts in general as being an athletic feat.

For a disabled musician like myself, this kind of perfectionism becomes a source of shame — not growth. I cannot do better. I cannot practice. I cannot record it one more time with feeling. I often feel like I am not allowed to play music because I can’t do it like able-bodied people can.

We have to adapt, and I don’t think our art suffers from that. In fact, I believe it enhances our art.

We play or write or draw or paint with limited energy, through brain fog, through physical pain. Every single note, or pencil stroke, or word carries with it an invisible labour that most people don’t see — a different kind of labour.

Our art might be quieter, or slower, or vulnerable, or imperfect, but it’s raw, vulnerable, and naked.

We often hear ‘write every day’ or ‘practice these scales everyday’ or ‘draw everyday’. This enforces the myth of the ‘ideal artist’, someone who hones their craft meticulously everyday, performs flawlessly, and always revolutionises art in some way — an ideal that a lot of disabled and chronically ill artists cannot live up to.

Why do we glorify hustle and not resilience? Or technical perfection and not vulnerability?

I’ve come to realise (and I’m still working on truly internalising this) that letting go of perfectionism doesn’t mean settling or being less than, it means expressing our truth in an authentic way. During the recording of my album I had to let go of a lot of perfectionism — if I didn’t, the album would not be a reality.

The world needs our voices, because we challenge norms and promote vulnerability, honesty and rawness over technical perfection. Could we speak of our art as being emotionally and phenomenologically perfect?

Tell me…

How do you deal with perfectionism?

How can we make more space for and honour disabled artists?

I’d love to know your thoughts!

Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.

Did you miss?

My debut single is out! Salem: A song for the disbelieved

I’m writing ‘chronic illness’ on my CV — we’re that awesome

Embracing Crip Time: Redefining pace, productivity and patience

Meditation: Moving deeper into acceptance

Are you looking for all the meditations? Click here

Are you looking for all music? Click here

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My debut single is out! It’s called Salem and is for all of us who weren’t believed

Salem is a song for all those out there who have been disbelieved, disrespected and mistreated for being sick. It’s been called “Heartachingly beautiful, raw, and profound.” And another listener wrote: “Your song Salem cracked something open in me — something that’s been waiting, aching, unheard…. This is more than a song. It's a testimony. It's protest. It’s sacred remembrance.”

All proceeds will go to Open Medicine Foundation for vital ME/CFS and Long Covid research. Please consider purchasing on Bandcamp or iTunes to support the cause.