Our tiny power as disabled people and why it matters more than ever

It’s important to grieve and acknowledge our losses and suffering. But it’s equally important to recognise our tiny power.

Hi Friend!

How is everything? I really hope your holidays weren’t too hectic or too lonely, but I also understand if they were. It’s hard to strike a balance. I find that my routines (like going to bed at eight o’clock in the evenings) help me to pace more diligently.

Real quick: If you open this post in the Substack app you have a voiceover option at the top of the post. This is what it looks like:

Phew, this winter was rough. While I’m doing slightly better than last year, winters always get the best of me. I lose a lot of energy — energy that I already don’t have — and my mind tends to go dark and inwards.

Before I became ill with ME/CFS, I struggled with winters, too. I grew up in Tanzania where winters meant a slight change from scorching heat to a little less scorching and a few more clouds to soothe the air.

So returning to Denmark, where our winters feel colder than in Greenland because of the humid winds, was a shock to my system. I would stay inside as much as possible and I would have bouts of depression — a spiritual heaviness that made everything seem bleak and like nothing mattered. I felt like I lost connection to the Earth and life in general.

Photo taken by my mom just outside our house.

While I didn’t go through any depression this year, thankfully, I did — and still do — have a bout of the what-does-it-matter-anyways. And it’s definitely not helping that we are seeing a backlash against human rights at the moment or that the world is literally burning, that too many people have lost their lives, loved ones and homes to climate change and war, that the rich are getting richer while poverty levels remain the same, and that disabled people continue to be discriminated against, coerced and abused, even in the world’s richest welfare states.

What can a tiny person like me do anyways?

As a social scientist I want to stay on top of things, I want to follow everything that goes on in our world, and I would love to express it creatively, but my disability prevents me from doing this fully.

I can skim newspaper articles, but not understand them in depth. And I can watch those five minute clips the different news stations post on YouTube. I’m very thankful for those. But I cannot, in the same way as before, grasp complex matters at a high enough level to write about them.

I want to practice my instruments and voice and get even better at creative expression — something the world needs more of, in my opinion. But my voice only opens up a few times a year, it makes me sick to play the flute and right now I cannot sit at the piano.

I want to be able to market my album once it’s out — hopefully this summer. But I’m constantly letting go of ideas as I simply don’t have the energy to execute them.

I want to write my book about chronic illness stigma, but I can’t move forward with it because I don’t have the brain power or physical energy to do the research needed. Even with all my smart ways of breaking things up into smaller chunks, doing research requires a lot of brain power: it requires that you can pick up one idea with your mind, hold it, pick up another idea, and synthesise the two into a third, more original idea. My brain cannot do that. It cannot hold more ideas at once. And it definitely cannot synthesise ideas.

I have a long list of books to read, for pleasure but also for inspiration. This is not happening either. Even though I am able to read for about five minutes a day, it’s hard for me to get into a space where I’m inspired. Getting ideas gets the brain working and I need to pace my mental energy diligently.

I grieve everything I have lost to chronic illness. I grieve everything I’ve had to give up. It’s important to grieve and acknowledge our losses and suffering.

But it’s equally important to recognise our tiny power. I am saying this as much to myself as I’m saying it to you.

Our lives, as people living with chronic illness and disability, are incredibly meaningful and important. We show the world what suffering can look like, but we also show the world that suffering is not necessary if only people were kind, compassionate and if we got the help, treatments and support we truly need.

Disability is the only marginalised group that anyone, at any stage in life, can instantly become a part of. Every human being should be interested and invested in social welfare because of this— in ensuring that everybody has a safety net, both economically in terms of basic income, or preferably unconditional basic income), as well as physically in terms of care and needs. We can show them that.

Our voices and stories matter more than ever. This is our tiny power.

It is also for this reason that I will be continuing Crip Creative Corner, but sporadically. I started it because I feel that creative expression — especially by those of us in difficult situations — is more important than ever.

Crip Creative Corner is a place where I share gentle prompts or exercises or visualisations to spark, reflect on or unblock your creativity. I usually prefer to have a schedule, but for this particular endeavour I think it’s best for me to do it sporadically and when I feel I have the energy to do it. It made me so sad when I let it go last year and I have been thinking of ways to do it and the only way is to do it when my energy levels allow. I hope you will be OK with this.

And now for my most exciting announcement: I have finally handed in all my music stems to my brother who will work with the mixing engineer to finalise my songs. I can’t believe I finally finished after ten years of not knowing whether this will ever come into fruition. Chronic illness is a beast that sucks a lot of creative energy out of you. There is still a lot of work to do, but the hardest and most important part is over.

I’ve had to grieve the loss of a lot of my creative faculties, like being able to sing a song all the way through — on demand or live, or practice my vocals, flute and piano.

Also, it’s to a large extent because of my privilege that I have managed to do this, it’s important for me to acknowledge this, and it’s in no way to downplay my own efforts. I have parents who care for me so I can preserve precious energy. They support me financially and I live with them, which means I can eat, have secure and comfortable housing that suits my needs, get the medication I need to stabilise my body, and still pay for my creative endeavors (making music is not cheap).

I have friends who live in insecure housing, who have to choose between medicine and food, whose disability fully prevents them from expressing themselves, and who cannot offord their creative endevours. My heart goes out to all of you! I think of you every day!

Also, every year I go through Susannah Conway’s Unravel Your Year and Find Your Word ebook as best as I can (I do most of the exercises mentally as it’s hard for me to write that much).

For 2025 my word is Miracles. Yes, miracles. It’s a bold word and one that potentially can lead to a lot of disappointments, but I’m so sick and tired of mundane-ness and lying here day in and day out.

My supporting words are Ease — because I know that this year will be wild as I will be sharing my music with you all and I need to remember not to push, and my second supporting word is Magic — because who doesn’t need more of that. My last supporting word is Spirit — because I have felt the absence of Spirit for many years, both as my body got worse (even though it’s stabilised now my function never recovered) and that it’s so hard for me to find creative flow, which is where I feel Spirit move through me.

I look forward to diving into this new season of The Bed Perspective with you all. I look forward to seeing you all in the comments and reading your reflections and thoughts — they all matter dearly to me and I appreciate every single one of you.

Tell me…

What creative projects would you like to work on this year?

What’s getting in your way of doing these creative projects?

What do you think is your tiny power?

What is your word of the year?

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?

Navigating creativity with chronic illness

Grieving the loss of my inner world

Tiny creative acts: How I stay creative in the midst of chronic illness

Meditation: Connecting to the Earth

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