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.
Thank you, Madelleine, for this essay which is making me cry with recognition and gratitude for being seen. Ableism is like glitter: it gets everywhere (even in our communities, even in our own minds). The world is better for your contribution.
Basically, fuck that lady. What a horrid thing to say. Your music, your choice on sound, your way to play it. And yes, such an ableist comment! How do I deal with criticism. I say fuck that and move on. It’s a hard shedding water shell I have learnt to carry around. Yes, it still gets to me, but I accept that how I feel is valid and move away. The block button will get used to assuage my ire too.
“which centres technical precision over expression or authenticity.” Give me Expression & Authenticity over technical precision every time!! I want to feel the person making the music & I FEEL you when I listen to your song!!
I just got another rejection letter yesterday for some of my poems. They say it can take 20 submissions to get a piece published but I don’t have that kind of energy at the moment to research find & submit 20 times. It hurts at first to get rejections & I want to give up— it takes so long for me to finish a poem because I can only revise when my brain is clearer. And I’m not sure ableds want to hear and publish poems about chronic illness. Some days I think just the creating is enough— it brings me real joy. Others I think I’ll just try to publish in disability journals. Lately, I’ve been thinking about starting a Substack on writing poetry with limitations and sharing my poems there.
Not sure what I’m going to do but thank you for this space to talk about being creatives with illness!!! Much love 💕
Ooh I love the idea of you starting a Substack about poetry with limitations! Yay! I hope you will consider it — but of course do what feels best for you. And yes, rejections are soo hard and we don’t have the energy to keep on submitting. I’ve been submitting the same essay for what feels like years, but it’s only twice and I can only submit like every six months.
Having ME/CFS myself, I am appalled that someone from your own patient community made such an ignorant comment. I would be appalled if a person whose body was healthy made one, but am even more so given the fact that it’s someone who has a physical illness themself. You are human and all of us who have had our lives changed by this insidious disease feel more vulnerable as a result of it. But with time, we learn to see other people’s actions and/or comments for what they are and learn to ignore them. I am so sorry this person put a negative in your time of happiness and accomplishment. I am happy that you took the time to look at this person’s comment and express your feelings in writing; a healthy way to process and release your feelings. We cannot allow ignorance or negativity to enter our minds and make a home there. It increases the severity of our ME/CFS symptoms and we are then the ones to pay the price for something we didn’t ask for…unsolicited advice. I love your song, as so many others have shared with you. Your essay is beautifully written and very profound. 🩷
Thank you for your Flute playing and your love of music. I am amazed and bewondered that you have such love for your flute and its music, to play in that situation you describe.
I am an able-bodied woman in my 70s and have recently taken up piano playing (and practicing) after about 50 years since I last played regularly. I love it, and it is just for my own pleasure.
Back in the day, perfection was required, for recitals, exams, and festivals, and my anxiety sure got in the way of the music! Now I can relax, and play just for the satisfaction and delight of honoring the music. As you do.
I appreciate and learn from your insights about judgements coming from an able-bodied perfectionist viewpoint. Thank you.
I love that you are taking up piano again! When I was younger I quit music because of all the perfectionism. It caused anxiety as you say. It still causes anxiety, but I try to work with it. Thank you for sharing ✨😍
I love how you’ve realised it was about perfectionism and a set of impossible standards that we can opt out of holding ourselves up against.
My mum used to say “Amber, when someone is mean to you, it’s always because they are jealous of you”. I could never ever see that myself but I did later learn the truth of it.
I’ve recently uncovered yet another layer of perfectionism again😖 I’ve been adopting the perfectly imperfect approach for years! And yet - it’s still there😩
Showing up as wanting to be the best. Inadvertently, Giving the impression that there isn’t enough (for everyone to be the best).
Even though it’s residual, it’s affecting my health. As uncomfortable as it was to sit with, I got a fine example of seeing how it played out internally. What was most interesting was that noone else was involved (on this occasion) - I had triggered myself with my own thoughts and beliefs🤯
Thank you, Madelleine, for this essay which is making me cry with recognition and gratitude for being seen. Ableism is like glitter: it gets everywhere (even in our communities, even in our own minds). The world is better for your contribution.
Aw thank you! And yes, ableism gets everywhere! And it’s sooo hard to get rid of.
Basically, fuck that lady. What a horrid thing to say. Your music, your choice on sound, your way to play it. And yes, such an ableist comment! How do I deal with criticism. I say fuck that and move on. It’s a hard shedding water shell I have learnt to carry around. Yes, it still gets to me, but I accept that how I feel is valid and move away. The block button will get used to assuage my ire too.
You’re so right!
“which centres technical precision over expression or authenticity.” Give me Expression & Authenticity over technical precision every time!! I want to feel the person making the music & I FEEL you when I listen to your song!!
I just got another rejection letter yesterday for some of my poems. They say it can take 20 submissions to get a piece published but I don’t have that kind of energy at the moment to research find & submit 20 times. It hurts at first to get rejections & I want to give up— it takes so long for me to finish a poem because I can only revise when my brain is clearer. And I’m not sure ableds want to hear and publish poems about chronic illness. Some days I think just the creating is enough— it brings me real joy. Others I think I’ll just try to publish in disability journals. Lately, I’ve been thinking about starting a Substack on writing poetry with limitations and sharing my poems there.
Not sure what I’m going to do but thank you for this space to talk about being creatives with illness!!! Much love 💕
Ooh I love the idea of you starting a Substack about poetry with limitations! Yay! I hope you will consider it — but of course do what feels best for you. And yes, rejections are soo hard and we don’t have the energy to keep on submitting. I’ve been submitting the same essay for what feels like years, but it’s only twice and I can only submit like every six months.
Yes please start a substack! We want to read poems about life lived with complex and chronic illness🩵
Having ME/CFS myself, I am appalled that someone from your own patient community made such an ignorant comment. I would be appalled if a person whose body was healthy made one, but am even more so given the fact that it’s someone who has a physical illness themself. You are human and all of us who have had our lives changed by this insidious disease feel more vulnerable as a result of it. But with time, we learn to see other people’s actions and/or comments for what they are and learn to ignore them. I am so sorry this person put a negative in your time of happiness and accomplishment. I am happy that you took the time to look at this person’s comment and express your feelings in writing; a healthy way to process and release your feelings. We cannot allow ignorance or negativity to enter our minds and make a home there. It increases the severity of our ME/CFS symptoms and we are then the ones to pay the price for something we didn’t ask for…unsolicited advice. I love your song, as so many others have shared with you. Your essay is beautifully written and very profound. 🩷
Thank you so much, Susan! And yes, we really need to ignore those aweful comments and unsolicited advice. I hope I get better at it.
Thank you for your Flute playing and your love of music. I am amazed and bewondered that you have such love for your flute and its music, to play in that situation you describe.
I am an able-bodied woman in my 70s and have recently taken up piano playing (and practicing) after about 50 years since I last played regularly. I love it, and it is just for my own pleasure.
Back in the day, perfection was required, for recitals, exams, and festivals, and my anxiety sure got in the way of the music! Now I can relax, and play just for the satisfaction and delight of honoring the music. As you do.
I appreciate and learn from your insights about judgements coming from an able-bodied perfectionist viewpoint. Thank you.
I love that you are taking up piano again! When I was younger I quit music because of all the perfectionism. It caused anxiety as you say. It still causes anxiety, but I try to work with it. Thank you for sharing ✨😍
Thank you for this beautiful meditation on our unique way of creating art. I will keep it close to me as I muddle through my imperfect writing.
You’re so welcome ❤️🌸
I love how you’ve realised it was about perfectionism and a set of impossible standards that we can opt out of holding ourselves up against.
My mum used to say “Amber, when someone is mean to you, it’s always because they are jealous of you”. I could never ever see that myself but I did later learn the truth of it.
I’ve recently uncovered yet another layer of perfectionism again😖 I’ve been adopting the perfectly imperfect approach for years! And yet - it’s still there😩
Showing up as wanting to be the best. Inadvertently, Giving the impression that there isn’t enough (for everyone to be the best).
Even though it’s residual, it’s affecting my health. As uncomfortable as it was to sit with, I got a fine example of seeing how it played out internally. What was most interesting was that noone else was involved (on this occasion) - I had triggered myself with my own thoughts and beliefs🤯
Thank you so much for your reflections! And yes, argh, perfectionism is sooo hard to heal!
I'm looking forward to getting a copy of your album one day 🎶👍
Yay! The full album comes out 29th August ✨
Don't worry if your time line changes. Everyone with a chronic illness is familiar with crossing things out on the calendar 🙂
So true!
I'd love to know what that lady thought she was achieving with a comment like that 🤔 That comment would make the hardiest of musicians stagger!
Thank you for always hitting the nail on the head so eloquently 💖 Your words help us all so much!
Yeah, I’ve wondered the same. And thank you ❤️🌸