There are days when I feel invisible. And there are days when I am seen too much. The latter are days when every glance feels like a question I don’t wish to answer. Days when just existing in public, in my disabled body, feels like performance art.
Even when ‘invisibly disabled’ there will be days, hours or minutes when your disabilities are exeedingly obvious and recognizable. And, to be visibly disabled in a world that doesn’t always know what to do with us, is to live at the edge of attention. We are watched. We are avoided. We are misunderstood, pitied, admired – and completely erased, all in the space of a single afternoon.
It can be exhausting.
It can be powerful.
It’s always complicated.
Because being seen is not the same as being understood.
Sometimes I want to be seen – truly seen, as myself, for who I am. Not just on the basis of my diagnosis, or list of ever growing symptoms.
At other times, getting reciognized for my diagnisis, is equally crucial.
As I said – Complicated!
Whether it’s the one or the other, I do wish people would put a bit more emphasis on the character of Silje. Because, while I’ve often been called «brave» or «inspiring» – I often think; because of what? I’m brave and inspiring because I choose to wake up in the morning – when the only other option is to roll over and die?
Don’t get me wrong, it’s nice to get good compliments from time to time! But my choice to get on with my life, has nothing to do with my diagnosis/ everyday symptoms – and everything to do with my strengt of character. I choose to get on despite my disabilities, because to me, there are no other options.
But what does this have to do with public recognition?
First of all, there’s a difference between being seen and being witnessed. And for many of us, that line blurs. Especially in public, when fatigue, pain, mobility aids or sensory limits aren’t just private realities but viable facts.
As Dietrich Bonhoffer once wrote:
«We must learn to regard people less in light of what they do or omit to do, and more in light of what they suffer».
This quote has lingered with me, as a quiet reminder that visibility alone isn’t care – it’s how we are seen that matters. In my case, I’ve been fortunate and unfortionate enough to experience both;
It’s the way people, just out of the kindness in their hearts have followed me home from the buss, out from a ditch in the road or in the middle of a store / or waited with me out of a seizure untill the ambulance arrived.
It’s also the way I’ve experienced the opposite; of being thrown off a buss and robbed during a seizure, of people being afraid to sit next to me in class, and of being stared at at a store – minutes upon minutes at a time.
These event have had the complete opposite effects on me; the first are the times I’ve felt the most human in my entire life. The second is a feeling of being forced into a cage, just to be on display.
So, if you can’t control which of these situations you encounter on specific days, all you can control is how you show up.
Because, while I don’t always feel strong, some days, just showing up as yourself in general is strengt!
Like wearing my red lipstick (my litteral recognizing factor) even when I’m exhausted. Or going out and into buildings wearing my dark filtered-glasses, even if there’s low brightness inside. Like resting openly in the middle of the day – or saying no to overexhaustion. Choosing day-to-day joy, not performance.
These are not small things. These are soft rebellions.
When I was younger, I used to thing pride, pain and productivity had to be loud parades, speeches and declarations. But I’ve learned through time that it can be equally simple and quiet.
That it can look like just using a mobility aid with elegance and confidence. Or asking for help, not because one is weak – but because people deserve support. Like dressing up just for myself, or refusing to rush when my body needs to move slowly. Or even just letting my needs be visible, even when it makes other people uncomfortable.
Because these aren’t acts of defeat. They’re acts of presence.
And to live truthfully in a world that demands constant performance is radical.
«Let them look. Let them wonder.
You don’t owe them invisibility».
– Original
Or, as Audre Lorde said:
«There is no such thing as a single-issue struggle, because we do not live single-issue lives.
– Audre Lorde
So, choosing to be visibly disabled in the event there is a choice, is not just about our bodies. It’s about how society responds to difference, to slowness, and to truth.
It’s about justice, compassion, and the radical idea that we deserve to be seen and held as whole people. To be treated on the basis of character and ability – not disease and disability.
So how can we be seen as whole and sovereign beings, while also living (at times) semi-independent, adaptable lives?
Firstly, if you’re disabled and visible – know that your presence is not a problem. Instead it’s a statement – a soft rebellion against erasure.
Because, you don’t have to be loud to be powerful.
You don’t have to constantly explain yourself to be ‘real’.
And your body, with all its abilities and disabilities, deserves to take up space.
So, dress up with whatever your heart desires, Rest openly under the clear sky.
Be bold. Move slowly. Laugh fully.
And let them look.
Because, even if it might feel like it at times, you are not on display.
You are simply still alive. And that’s more than enough.
– Silje
