Personal – (Dis)Abled Creations

Independence is a Myth

What we call strength, is often just support we don’t see!

Today, there seems to be a quiet ideal at the center of (at least Western) modern society;

To be independent, to be self-sufficient – and to be practically unaffected by the world around you.
To need no one, rely on nothing, and to stand entirely on your own.
In turn, this is presented as ultimate strength, as success – and as something we should all strive towards.

The actual truth however, is much- much simpler, yet much harder to accept.
Because,
no one lives like this.

» There is no such thing as a self-made man. You will reach your goals only with the help of others.»
– George Shinn

Independence, as we have been taught to imagine it, is not based on reality.
It is a story we tell (to both ourselves – and to others) that works really well for the upholding of various systems, yet far – far less for actual human lives.

And for disabled people, this stings ever worse, as for us, it has never been true to begin with.

The easiest person, not the best one

As an example, this ideal of independence shows itself clearly in the workplace;
where we are told that ‘hard work’ leads to opportunity. That skill, edcation and persistence will open doors.
Now, I am not disclaiming that skill, education and persistence aren’t good qualities to have regardless, but in a workplace environment, most settings are not looking for the most capable person – they are looking for the easiest one.

From a Norwegian setting, this means that most businesses, at the moment they advertise a position, they either have a clear candidate in mind (a friend of the manager/ someone who already works there and knows everyone/ or someone who impressed someone else in said business).
You know; the one who requires the least adjustments, the least understanding – and who might cause the least disruption.

And this is a great example of where the myth of independence can become dangerous. Because, if independence is the standard, then anyone who requires support is immediately seen as a risk – as opposed to a qualified assett.
Not because they lack the right ability, but because they expose the truth:
No one succeeds alone!

Healing is not the goal – stability is

This same illusion also appear in how we talk about health.
We are taught to aim for recovery, to get better, and to return to whomever we were before. But for many of us, that ‘before’ version of life does not exist anymore.
My mother recovered from cancer, and she is now cancer-free! <3 But heavy cancer treatment tears down the body, regardless of how much strength you have – and my mother will never fully return to who she was before.

Furthermore, for some of us, this ‘healed’ version of self never existed in the first place. Thus, chasing a life free of any kind of disease or disability – can be its own kind of harm. Because, healing as it is often imagined, suggests an end point – a life where no more care is needed.
I was born with epilepsy; it sits in my brain. So, unless you remove said part in my brain (which for many is not possible), I will always have epilepsy.
Thus, for me, the goal is not to ‘heal’ from it – but rather, to remove the impact is has on my life. This means: have as few seizures as possible, with as few medications as possible, with the least amount of negative side effects as possible.

And due to this experience, chasing an end point to ‘healing’ sounds ridiculous in itself; as those lucky enough to age – will need some form of care sooner or later.
So what many of us actually need, is not independence from care – but, to get some form of stability from- and within it!

For me, this means a life where support exist consistently. Where systems adapt to what those within them need – and where needing help is not seen as a failure – but rather as a regular part of being human.

«The good life is a process, not a state of being. It is a direction, not a destination.»
– Carl Rogers

Your home is not a failure – it is a response

The constant pressure to be independent, does not stop at work or health, it also reaches into our homes.
Staying home is often framed as avoidance from society, or as something to fix.
But for many of us, especially those of us with an unstable disability, home is not where we give up. It’s where we adapt – where our energy is protected, and where positive routines can exist without a constant negotioation.
It’s where ‘the good life’ seems possible again – and (should be) where the amount of daily stress miniscules only to what is absolutely necessary.

Many calls spending time at home lazy. But I think this is incorrect. True for some people – definately, but in such cases, I belive there are other issues (ex mental) that needs to be looked intoo first. For the grand majority, however – especially those with a disease/ disability; spending time at home, is the only way to fully relax.

Gratitude, and the quiet weight it carries

While I have expressed my gratitude to family and friends deeply in the past – and I fully stand by it, there’s no question that gratitude can also feel very heavy.

We are told to be grateful for what we have. And I belive most people are.
But very often, feeling gratitude can turn into expectations (from either party) – and said expectation can turn into pressure.

It’s almost as if feeling gratitude (for what we have) can make us feel like we must accept everything as it is. That we should not ask for more – after all, we should be grateful!
You want better treatment? – you should be grateful that you get any treatment at all!
You want a healthier work scedule? – at least you can get work!
You want cheaper medication? – Do you know how many people can’t get meds at all!
You want a more adaptable home? – are you aware of how many sleep on the street?’

And so, slowly – over time, we begin to stretch ourselves. We clean more than we should, work more than we can sustain, push further and further beyond our own limits, stretching ourselves thinner with every step.
Not necessarily because we are forced to do it – but because we feel like we owe it.

Slow is not the problem – the system expecting speed is

If independence is the true ideal, then speed becomes with what we measure.
– Fast recoveries
– Fast productivity
– Fast results

And anything slower is seen as falling behind. But what if the problem is not slowness itself?
Day by day, year by year new studies compile linking hustle cultures to poor mental/ physical health, slow childhood progress to undiagnosed – thus untreated disabilities, and fast-paced mental states to less ability to focus, less attention to detail – and a poorer quality of life.

So what if the problem isn’t slowness – but rather systems only able to function at one pace, all the whilst calling everything else a failure?

Remember, slow progress is still progress, and if fast paced systems insist on you taking tree steps forward – only to then have to take two steps back, you’re going to wear yourself out!
And sustainable lives are built far more often through patience, rather than pressure.

The truth we already know

While it may take some time for people to refraim it in their heads;
Interdependence is not weakness!

It is a reality the majority of people will experience throughout their lives.
Because, everyone relies on something.
Or someone.
Or on systems, structures, relationships and on support.

The only noticable difference is that some of us can’t pretend otherwise!

_____________________________________________________________

A small task

Take a moment to notice one place in your life where you already rely on something – or someone.

Then ask yourself;
«What would it feel like to see this not as a weakness, but as a part of how life actually works?»

You do not need to carry everything alone. No person were ever meant to.

– Silje

The Hardest Part Was Coming Home

When you leave medical-treatment, there is something no one really preopares you for.
It is not illness itself, nor is it the routines you’ve come to recognize.
Its not even the mental and physical exhaustion of planning, packing, unpacking and resetting. It’s quite litterally coming home.

While I touched on this a few weeks back, and (tecnically) was preopared for it – the true impact of coming back home really hit me right in the face this week!

Because, while in treatment, everything has a structure to it. Your days are held, limits respected (or at the very least acknowledged!) – and when you need to, litterally laying in bed all day feels totally normal.
So in a way, this daily structure acts as a rhytm that moves around your body, instead of constantly pushing against it.

And then suddenly, you come home.
And from one day to the next, it’s as if the world expects you to fit back into a life that no longer fits you.
The structure is removed, and everyone (including yourself btw!) keeps pushing your body and your mind into a rhytm that doesnt sound right anymore.

When real life begins again

No matter how hard you try, coming home from medical rehabilitation is not a return to life as you know it. Instead, it is a negotiation between what you learned in treatment, and what real life demands of you.
You try yur best to hold on to the routines that helped you grow as a person, while also recognizing that your daily structure has completely changed. You may be aware of your limits, but real life is often messier. Much less predictable, not to mention less forgiving.

So as the days go by, you encounter expectations; spoken and unspoken. Things that needs to get done. Things you feel responsible for, even if no one explicitly asked you to carry said responsibility.
– And slowly, almost without noticing, you begin to strech yourself again.

Spring cleaning with a body that has limits

In my case, the diswasher broke about a week after my return (which I had nothing to do with, btw!) – but it was older, and it was bound to happen.
The fact that it happened at this particular time of the year, however – doesn’t exactly help!

Spring in Norway comes with its own structural rhytms; light returning, (most) people’s energy rising, and with it, the almost ritualistic need to clean, reset, and start fresh.
And I am definately a part of that!

At current, I live in a basement apartment in my parent’s house. I pay nothing to live here, and because of that – I feel a deep responsibility to contribute; especially through cleaning.

The thing is: my own space takes maybe five minutes to clean. I am very tidy, very structured – and I organize (litterally!) all of my belongings every season.

The rest of the house is another story all together. Due to this, cleaning – and especially Spring Cleaning becomes something else entirely. Its not a quick task to finish and complete, but an ongoing cycle, that no matter how much I do – seems to return within a few days.

So it leaves me either feeling constantly tired and irritated at the lack of organized, tidy spaces – or stressed out of my mind from trying to keep it organized and tidy!
And because I feel grateful to be able to live here – truly grateful – I keep doing it.

I do it, even when my body doesn’t quite have the capacity.
Even when I know – realistically, that I only have the energy to do it once a week.
And I keep doing it, even when it starts to take from the things I am trying to build on my own.

You can be grateful and still overwhelmed

Personally, I think this is the part many people (myself incluced) struggle to accept. Because, I am grateful – and I am overwhelmed!
Both are true!

I am grateful to have a place to live, and grateful for the support of my family through decades of balancing and navigating diseased/ disabled-realities, with life experience.
I am grateful that I don’t stand alone through this.

But I am also highly stressed;
Physically exhausted from trying to balance exersize, cleaning and basic health goals, and mentally drained from the constant awareness of what still needs to be done.

And perhaps, most importantly – I am fully aware that much of this pressure is internal. After all, no one is forcing me to clean beyond what I can manage. No one here (beyond myself!) is demanding perfection.
But gratitude, when it turns into obligations, can feel very heavy.

It can make you prioritize everything except yourself – and call it responsibility.

When helping starts to cost too much

As we keep pushing ourselves to keep going, there is a quiet line somewhere, between contributing and overextending.
And I think coming home has made that line very, very visible for me!

On the one hand, I want to help, give back, and be someone who contributes – yet on the other, I am also someone with a body and mind that has limits.
And when I ignore said limits – when I clean instead of resting, push instead of pacing – and on the whole, choose responsibility over sustainability – it can cost me!

It costs me stability, it affects my sleep, my stress levels rise – and it depletes my ability to focus on the things I enjoy doing; the things I am trying to build. Whether it be work opportunities, creative projects or even my future potential as a whole.
And this is not a fair trade.

What I am trying to learn now

If being in treatment taught me anything, it is this;
Structure is not something you leave behing when you go home. It is something you have to protect!
This means making choices that might feel uncomfortable;
cleaning less, resting more, allowing for things to be imperfect – and allowing myself to prioritize long-term stability, over short-term satisfaction.

It means accepting that contributing does not have to mean exhausting myself to the point of breaking. And that not doing so, to protect my own healt – is fully my own responsibility.

A small pause

So yesterday I chose something different, I took a small break.
A small break from cleaning, a break from writing – and just paused.
Instead I went to the hairdresser, and sat down while someone tended to my hair.
I brought a book to read, was served coffe and snacks – and a weight was lifted off my shoulders.
No cleaning. No fixing, and no adjusting.
Just sitting, reading and existing in my own space.
And maybe that, more than anything, is what coming home is really about;
refusing to return to what was – but slowly learning how to live,

differently than before.
—————————————

A bend in the road is not the end of the road…Unless you fail to make the turn. – Helen Keller

A small task for you, reader…

Before you go to bed tonight, take a moment and ask yourself;
– What is one thing I can let be good enough this week?

Then allow yourself – fully – to leave it there.
Remember, rebuilding a life is not about doing everything. It is about picking and choosing what really matters, and letting the rest wait…

– Silje

The calm before the storm

Sometimes the body reminds us it is the truest architect of our days.
This week, mine has laid me low with fever and flu, so there will be no new post.

But absence is also a kind of presence: a room left dark teaches us to notice the light.

I’ll be back next week — stronger, sharper, and ready to write again.

«The wound is the place where the Light enters you.»

— Rumi

Hope to see you all next week!

-Silje

The room you thought was a hallway

On Identity, slow-living, and the power of not apologizing

I like to think of my identity as a house. Different rooms in said house represents different aspects of my identity. Some rooms are small – other big, some are practically libraries, or warm kitchens full of memories. And some rooms are locked, as we’re still not sure how to enter them. Regardless of their size, and whether we are aware of them or not, each room represents parts of ourselves.

The problem arises however, when the rest of the world barges in, points at the first hallway they can find – and claims that «this is you, this is all that you are!»
For me, in recent times that hallway has most often been named «disabled».
They see the seizures, the paperwork, the pacing. They see my body moving differently or my voice halting from aphasia and assume that this single narrow corridor is the entire structure of who I am. But here’s what they don’t know:

That hallway leads to a whole damn palace.

Yes, I am partially disabled. I’m queer. I’m a woman. But use any stereotypical elements to describe me based on these categories, and you will be completely wrong. OK, not completely – as I do have a love for septum-piercings and I do have big hips. But that’s about It.

«Do I contradict myself?
Very well then I contradict myself,
(I am large, I contain multitudes.)»
– Walt Whitman

So who gets to name your house?
Your Identity is not a one-room apartment. It’s a wild construction project of life experience, desire, emotion, history and sometimes even trauma. But the world doesn’t like mess or multiplicity. It wants easy-peacy simple signs; «woman», «disabled», «burdensome», «Inspirational».

I am a women of intellect and instinct. Highly ambitious but with a slow-living agenda. I’ve had a feminist, political rage in one hand and a childlike wonder in the other. I carry the knowledge of centuries of cultural memory, dreams for the future, and griefs I haven’t yet named. I am both very kind, and very stoic; higly neurotic – but also very practical. At this day and age, most of my doors are open, and I will not allow myself to be reduced.

Because too many of us, whether we’re disabled, queer, neurodiverse etc – we learn to play small. To shrink ourselves to the stereotypes that does not match us, just so that other people can place us in boxes we’re way too big for. We decorate the hallways of the house that is ‘us’, but never dare to open the door to the art studio, the debate chamber or the garden; rooms where our joy lives without supervision.

«I will not have my life narrowed down.
I will not bow down to somebody else’s whim, or to somebody else’s ignorance.»
– bell hooks

Personally, I believe we have no other choice than to open these doors. To fully accept and reclaim every inch of the internal home we’ve built, even the parts that seem broken, and in need of repair.
It might take a while, but with the right mending, it will be repaired!

Now I know, the world runs fast – and I don’t. That’s not a flaw.
Whether I like it or not, being disabled, while not my entire identity, does influence parts of it. Amongst other things, my pace is often slower. I get easily interrupted or paused – not because I lack drive, or lack the ability to multitast – but because my brain will litterally stop me from doing anything (including stop me from breathing) if my body feels too stressed, too exhausted or too tired.
This used to make me feel bad and broken. Used to make me feel lazy and lost.
But then I realized: everything sacred in nature moves slowly. Seasons don’t rush. Trees and flowers doon’t bloom on demand. Grief, love, healing – all of it takes time. Why should my life be any different?

«Adopt the pace of nature: her secret is patience».
-Ralp Waldo Emerson

Slowness and slow-living taught me to think even deeper. To notice what other’s speed past. In turn, it is rare that I watch a movie or a new TV-show without constantly guessing right about what’s to come (White Lotus, anyone?). Or meeting a new person and just understanding who and how they are within the first 30 minutes.
Not because this is particularly special in any way, but because allowing yourself to work, think, see and act slowly – also (quite often) leads to more detail-oriented steps ahead.
It has certainly helped me to build ideas brick by brick instead of by burnout.
And by showing me that being slow doesn’t mean being less – it just means being highly intentional.

And if the world in their ‘one hallway view’ calls that weakness or laziness, I call it a revolution.
___

Because, I do not apologize for being fully myself!
I’ve opened all the doors, and I let them stay open.
Because, being wholly yourself is not a performance, it’s a right.
I have known white – hot rage as a child, watching how I was treated in school. I’ve felt heartbroken over things I may never experience, and fear over what epilepsy and aphasia means for my future. I’ve also felt fire and brilliance move through me like a thunderstorm, and extreme joy over fun, life-altering experiences.
And none of it cancels anything else. Each room belong in the same house.

We are not meant to live inside the hallway. We are meant to inhabit our homes fully; to bloom in all the rooms built for us. Without apologies, without shrinking ourselves intoo palatable versions to make other’s comfortable – but with the soul-deep knowledge that this body, this mind, this identity is ours.
An no one else gets the final word on what that means.

So take up space, and let them misunderstand. Speak without softening your syllables, and let them question. Let them knock on doors they’ll never be invited through, and live like your voice is proof that you belong here –
Because it is. Because you do.

Lastly, a task for you, reader:

Take a moment today to explore the house of yourself.

1. What rooms have you been hiding?
2. Who told you they weren’t worth showing?
3. Where have you rushed when slowness would have healed?
4. What would it mean to live your multitudes without apology?

Write a list. Make a drawing. Take a photo. Share it or don’t. Just begin.
And if you ever feel someone trying to reduce you to a single hallway, smile, and say: “You haven’t even seen the rooftop.”

– Silje
_______

Want to go deeper? Try these books:

“Sick Woman Theory” by Johanna Hedva – an essay and framework about invisible illness, resistance, and political care.

“How to Do Nothing: Resisting the Attention Economy” by Jenny Odell –
a lyrical call to reclaim slowness, attention, and meaning in a world obsessed with urgency.
___

I was a raging child. Now I’m a brilliant storm.

– And I’m still brilliant.

«I am deliberate and afraid of nothing.»
– Audre Lorde

There’s something no one tells you about living in a disabled body. They teach us to be brave, to be patent, to endure. But what they never preopare us for, is the rage.

Now I’m not just talking about frustration, nor irritation, I’m talking bone-deep, hot-blooded fury. The kind that simmers in your chest like lava waiting to rise.
It’s the kind of feeling your body remembers.
Mine certainly does.

I remember being a small child – intelligent, curious; yet also extremely different from the other children. In elementary school, I was punished for this. While I had not been officially diagnosed at the time, my teacher – who always picked a few kids to ‘bully’, seemed to think that me just sitting there, not answering or reacting ( small seizure anyone!) – was just me playing games with her. While I don’t remember much of these years, I do remember the feeling of blinking – and not understanding anything. Like blinking and suddenly someone is reading a totally different page of a book, or blinking and your teacher is yelling at you, and you have no idea why.

This lack of understanding what was going on everyday, also lead to extreme sadness from my end. Sadness for the shame of being treated differently than the rest, for no apparant reason. Sadness that my teacher’s bullying made all the kids in class feel allowed to bully me too, and sadness that I seemed to be the only one who didn’t understand why this was happening to me.

As a small, not yet knowingly disabled child, I didn’t have the right words to explain the injustices and ‘quiet’ violences that kept stacking up against me. How being treated like I was less; less capable – less worthy- less human also made me question myself.

And as we all know, this type of sadness can turn to rage.
My rage first bloomed in the classroom; where I was taught less than I deserved.
And in the hallways, where I was talked over – or talked about, but never talked to. In a system, where I was filed away like a mistake they couldn’t return.

And truth be told, while I’m much better now – it has never completely left me.
Bacause I still rage. At injustice. At politicians who treat disabled people as burdens. At the media’s endless scapegoating. I rage at doctors who condescend just because some patients aren’t as directly spoken as I can be. I rage at strangers who think my seizures makes me weak, or even think they are fake; just for attention. I rage at able-bodied people who thinks the lives of the disabled are just cautionary tales and side-character’s in theirs.

I also rage at myself. At the way my body betrays me, and makes it impossible to plan ahead. At seizures that steal my time and energy, at the current-building aphasia that is swallowing my words. At the fatigue that makes simple things feel impossible.

«When we are no longer able to change a situation, we are challenged to change ourselves.»
– Viktor E. Frankl

Because here is the thing that people don’t understand:
I know I am smart.
I know I have better emotional intelligence than most.
I know I have the potential to be brilliant.
Not despite my disability – but partially because of it.

I am smart, as it took much longer for me to learn things than many others, meaning I had to learn how to adapt to the current and flow with it.
I have better emotional intelligence, as my lack of friends in school, made me notice and mentally remember the connection between body language and spoken words, before I was even aware I was doing it.
I know I have potential, as I’ve always been trained to believe in myself, even if no one else can see it.

So, even with brain fog. Even with memory lapses. Even with tremors, and scilence and fear. I read deeply. I write with precision and intended beauty.
I reflect, observe, and feel in ways many neurotypical people cannot.

And, yes – of course; I grieve the parts that epilepsy takes from me. And my current aphasia scares me . Not because It’s inconvenient, but because I love language…
Words are my work, my home and my rebellion. What happens to this blog if one day I can’t find the right ones?

This is where alot of disabled people are, in my mind the strongest there is.
Because there is so much strengt in being aware of your own limits, grieving them as you need – and then still daring to try!

«I am not what happened to me, I am what I choose to become.»
– Carl Jung

Many of us live in a culture that tells disabled people that we must be calm, must be palatable and digestable. That if we are angry we are bitter or even greedy. That if we fight , we are difficult. That if we cry, we are weak and broken. But here’s the truth; your rage is not the enemy – Injustice is. Your rage is simply it’s siren.

There’s nothing broken about feeling furious when you’re denied basic dignity! There is nothing wrong with knowing your worth even when the systems do not. Anger can be a compass that shows you where to dig.
That’s where the transformation begins.

Because, we’re allowed to rage. In fact, in some cases we have no choice. Rage is the only rightful response to injustice, to dismissals – and a world that prefers us compliant. But we don’t have to stop there.

It has taken me years to learn how to shape my rage intoo something useful. Not because I stopped being angry, but because I started listening to what the anger was trying to tell me;

That I am worthy. That I am smart. That I matter. That I am capable.
___

Rage, when honored and understood, becomes fuel.
It becomes clarity. It becomes creation.

Soooo what now?

Well, you take that raging fire – and you build with it.

Write your story down. Say what others are afraid to.
Cerate something beautiful that makes space for both your grief – and your joy.
Challenge systems. Question authority. Show up!

And when your voice shakes, or dissapears, or takes too long to form – don’t confuse scilence with absence.

Because your truth is still there.
Even when you feel broken, you are still whole.
Even when you feel lost, you are still a brilliant person.
Even when the world refuses to help, you are still worth a wonderful life.

So rage! But don’t stop there.
Rage – and then rise.

The brilliance you’ve always had is still there.
Go use it.

– Silje

Let them look: Disabled Presence and the art of being seen

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

Disabled and Proud: Celebrating Pride and Disability Together

June is Pride Month; a time to celebrate identity, love, resistance and resilience. For many it’s about waving a rainbow flag with joy and confidence. But for those of us who are both LGBTQ+ and disabled, Pride can carry an even deeper meaning. It’s not just about loving who we love – it’s about surviving, thriving, and finding pride in every part of who we are, even when the world makes it difficult.

For a long time I struggled with Pride. Not because I was ashamed of being bisexual, or ashamed of my disability – quite on the contrary. My sexuality has always been a non-issue in my family, and I’ve never seen a reason to be ashamed of being born with epilepsia – since It’s not my fault.

However, as an ‘outlier’ in both the queer and the disabled community (that is, I’m not gay or straight enough – and not visibly disabled enough; untill I am too visibly disabled in the midst of seizures), I have often felt very alone. Now, realistically I know I’m not. I also know this feeling is not connected to just these communities. Quite on the contrary, I’ve felt like this any time I join a new community. It’s a feeling of being included but simultaneously being completely on the outside. In many ways it has often felt like I was not made for this world. As one of my favourite writers and feminists, Simone de Beauvoir wrote in her book The Woman Destroyed: «I was made for another planet altogether I mistook the way» (Beauvoir 1967). I completely understand.

Luckily, throughout my life, the fog has gradually lifted.
Like the start of a quiet revolution within me, with age I began to realize that feeling pride wasn’t just about resilience or performing strength. It was about embracing truth.

Being queer and disabled means navigating a world that often sees both identities as tragic or invisible. Too often Pride events aren’t accessible. Too often LGBTQ+ spaces aren’t designed with neurodivergent or psysically disabled folks in mind. But we exist, and we belong. And there’s a power in that intersection. As disability activist Eli Clare writes in Brilliant Imperfection: Grappling with Cure (2017):

Pride means resisting shame. It means rewriting the meaning of body and mind. It means telling our stories on our own terms
-Eli Clare

So what is disabled pride? It’s not about pretending things are easy, but rather about saying: I am me – I am whole, exactly as I am. It’s about finding strengt in community, and about refusing to shrink.

«Disabled Pride 2»
Image by:
Silje Elsrud Yttervik

Disabled pride means celebrating what we’ve learned; resilience, adaptability, emotional intelligence. It means recognizing that our accomplishments may not look like others’, but they are just as real, just as powerful – and just as worthy of pride. Because, as Alice Wong (2020) would say; we are the experts of our own lives.

This Pride Month I’m holding both my bisexuality and my disabilty in the light. I’m choosing to celebrate the beauty of intersectionality. So, if you are queer and disabled: your existence is radical. Your joy and happiness matters. Your story matters. And you are not alone!

-Silje

The Quiet Courage of Being Ourselves

Courage is often portrayed in sweeping gestures. You know, the soldier in battle, the activist at the podium, the climber on a windswept peak. Yet for many of us, courage shows up very differently; In the quiet, often unglamorous acts of self-honesty, and in the choice to live with honesty and integrity, despite being in a world that often resists the truth of our existence.

As disabled people, we often face a unique pressure: to fit into a mold that was never built for us. We are taught, explicitly and implicityly, to mask our needs, downplay our differences, and strive to be «normal». I should know, I’ve done it all! But what if courage isn’t found in becoming something else, but rather in daring to be fully, visibly and unapologetically ourselves?

As mentioned in a few previous posts, I was quite the ‘weirdo‘ from early on. From the several daily small seizures in the middle of primary-class (at the time still undiagnozed) which made my teacher think me both dumb and a troublemaker, and made my friends confused, to the daily times I chose to sit by myself at the beginning of the school forrest. Sure, on the one hand this was (as mentioned) due to me refusing to play with the kids that would bully me a few hours later – but It was equally in order to sit alone and reset my mental and emotional battery – which as a an epileptic, very easily runs out, by all things going on in the average schoolground.

Later in life, as I entered University – I simply made it a general point to tell everyone of my epilepsia (still do!) Because, it’s not a question of «if» I get a seizure, its a question of «when» – and when you have several seizures every day, it’s impossible to actually live a life without being preopared for it to come. And for me, that in itself is a sign of courage, as I refuse to roll over and die just because some people would rather pretend people like me don’t exist.

For anyone interested in learning more about this, and the several other ways that embody the lived experiences of disabled people, I would strongly reccomend Robert McRuers book «Crip theory: Cultural Signs of Queerness and Disability«. The book is one I myself used for my MA-thesis in the heritage of disability on display, and works as a framework that reclaims disability not as something shameful of pitable, but as a powerful, complex identity. With it McRuer encourages us to challenge abelist assumptions, to disrupt expectations, and to embrace our bodies and minds as sites of wisdom and resistance.

Believe it or not, this is one of the ways the concept of ‘passing’ originates from. From both disabled (and black) people either pretending to either ‘pass’ as an «able-bodied» (or white) person – or quite strongly reisting to do so. Personally, I’ve done both, greatly depending upon the situation and what is physically the safest for me.
As Audre Lorde once wrote, «Caring for myself is not self-indulgent, it is self-perservation, and that is an act of political warfare.» (A Burst of Light, 1988)

In the same spirit, choosing to center our needs, speak our truths and shape our lives around what sustains us is not weakness – it is defiance.
To live with integrity as a disabled person is to resist a culture that insists we hide. It is to claim our space, tell our stories, and believe that our truths matter.
You are already courageous. Every time you ask for help, name your boundaries or simply exist without apology, you are practicing a radical kind of bravery.

From Eli Clare’s «Brilliant Imperfection: Grappling with Cure» (2017)

«I want a world where we value interdepencence over independence access over ability, justice over cure. Where disabled bodies and minds are not seen as broken but as deeply valuable. Where difference is not something to be overcome but rather something to be voven into the fabric of our communities».

Take a moment today to recognize one way you showed up with courage. And if you feel like it, share that story. You never know who needs to hear it.

– Silje

Finding strength through life’s hurdles

For the longest time, my life has seemed like a constant crossroad of two polar opposites. The life of someone who never really grew up, yet at the same time, someone who never behaved like a typical child; instead, way to grown, even at a young age. My mother likes to say that I was born 60 years to late – yet simultaneously, it’s like I was born way to early. What I remember being consistent understandings and realisations during my elementary school years, some of my aquaintances first came to realise in their early 30’s.

This is not to say that I am somehow superior to other people – I do not think that.
I do however get the impression that I am supposed to feel inferior to others, whether it be due to my disability, or my current lack of employment. Yet, when I look at the troubles that seem to stand in the way of most people, I cannot get myself to feel inferior either. Because while its true – I am partially disabled, and because of the difficulty of finding part-time work within my field, I am also currently unemployed. But I was not raised to sit around and sulk over my ‘failures’, especially when they are not really my failures to begin with.

Its unfortionate that many societies (my own included) look at disabilities as something ‘end all, be all’ that completely ruins your life. However, I don’t think like that. There are hurdles I will have to overcome that other people wont. And no matter what field I try to enter into, I will always have to be a little bit better than the others. And I will have to stand strong and solid in every idiotic situation that may occur. I personally may not like that – but it does not change reality.

However, reality is not always negative. After all, my mental health is solid. I have a great network of family and friends supporting me – and we all work for eachother. I know who I am, what I like -and not, and I’ve never been afraid to implement strong boundaries to keep my life as peaceful and drama – free as possible. And the people who dont respect that – or respect me, they are gone after the first misstep.
More than anything, I like myself, and in this day and age, that in itself is not a given.

So whoever you are, whatever you do and whatever unfortiune your life may be plagued with – don’t worry about it. Do what you can to make your life as good as possible (perferrably without making someone elses’ worse!), fix what you can – and except what you can’t. And remember, just becuause someone else seems to live a perfect life, does not mean that they are happy. You never know what someone else may be going through.
– According to Silje!

I was made for another planet altogether. I mistook the way
/ Simone de Beauvoir