Social – Side 3 – Silje Elsrud Yttervik

The Myth of the Wall: What Menopause Reveals about Power

«They tell women they reach a wall at 30. That somehow, beauty fades, fertility wanes and the world will stop listening; stop caring. But nature laugs at such a story – because, nature never built a wall. She built a gate».
– Silje Elsrud Yttervik

Much like many women of my generation, reaching the age of 30 seemed like such a fuzz. Apparantly; according to the social norms of ‘chronically-online-wannabe-gods’, women at the age of 30 is supposed to feel some sort of terrible way – and then just roll over and die. But, we all know that doesn’t happen. Instead, many women feel better, look prettier and and have generally better, healthier lives than they ever did during their 20s. I certainly know I do! And those who don’t – most often than not spent their entire teenage-/ very early adult stage, tied to some kind of man they now recognize as a master manipulator, beginning their 30’s with 2-3 kids they’re caring for all by themselves, while doing all housework and paying 50% of the bills. And, well – if that is your life, there’s no wonder you feel tired!

Regardless; the general construct seem to be that women over 30 hit «the wall». A form of ‘something’ that from one day to the next changes everything about her. Personally, I find it a bit funny. Because, once again – according to this wall, women are no longer beautiful, no longer fertile and always sad and bitter. And, there’s nothing realistic about this. Some of the most beautiful women out there (for anyone not litterally ‘pdf-files‘) are in their 40’s; when people feel free and authentic enough to be themselves. Some women have children as far as in their mid-to-late 40’s, so the fertility-aspect is not true either. And, lastly – it takes alot of time and effort to make groups of smiling, laughing women in their menopausal stage seem sad and bitter. The fact that certain people actually do that, should be enough to illustrate how little truth there is to it.

So, then what is the wall?

Well, the latest, general consensus amongst neurologists seem to be that human brains are only fully developed sometime between the age of 27-30. For young women, that is the age she becomes anchored in who she is, becomes less naive and more mature – and with it, much less difficult to manipulate.

So, when (especially) older, supposedly mature men, scream and shout that I should roll over and die, as I don’t have kids anyone can put on me, and I have no value beyond reproducing, I tend to find their talking points very – odd.

Because, If women actually were made just to reproduce, nature would make sure we could reproduce all our lives, kind off like men can. But, when a women reaches menopause, she (most often) has only lived half of her life. Or to put it another way:

«If women were meant only to bear children, nature wouldn’t have made them live half their lives beyond it».
– Silje Elsrud Yttervik

Men on the other hand is a different story. If they stay healthy, men can tecnically reproduce their entire life; a little boy is born – he gets to teenage age when he (biologically) can reproduce, gets older and older (while able to reproduce), then he dies. So if any sex is tecnically made only to reproduce other humans, it’s the menz…

Unfortionately, this double standard is intentional, and has through centuries-old attempts at changing nature, been baked intoo the design of society.

Biology speaks Truth
Within the animal realm , only a very few species experience female menopause; humans, some toothed whales (orchas, pilot whales) and elephants. In these species, females live long past their fertile years, often becoming central leading figures – as wise, powerful and very needed in their pack.

This is best explained by a concept many evolutionary Biologists and Anthropologists refer to as the Grandmother Hypothesis; which shows how post-reproductive women contribute significantly to the survival of descendants. Their presence alone improves child-rearing success, resource sharing, and transmission of wisdom.

One study with pre-industrial Finns found that women beyond reproductive age who helped raise grandchildren had better overall «fitness»trajectories for their lineage – suggesting that menopause is not a «defect» but rather an adaptive trait manily issued to women.

Based on this fact, is seems likely that nature designed these females in a much more generous way than what society seems to think. After all, she was designed to bear children, nurture them – and then lead society forward- for as long as life allows.

Patriarchy and its Backfire
One thing I find immensely Interestingly, is that out of the three animal species that experience female menopause, two out of the three have matriarchal societies. And the one that does not, have instead fought tooth-and-nail for centuries to prove that the patriarcal way is instead the natural way – and doing a very poor job at it!

https://powerculturecoco.substack.com/p/what-is-matriarchy — Image by: Substack @PowerCultureCoco

The problem with human societies is that the patriarchy eats itself. Every time it silences a woman; a weaker less important part of the patriarchal-pyramid (according to itself), it also weakens the structure that holds it.

Furthermore, from a sociological lens, when highly-patriarchal laws are put in place, it leads to societies that prefer male children over females ones, creating laws that result in parents (litterally) killing their newborn baby-girls, hoping for a male one next. Such patriarchal talking points are another example of how short-sighted the patriarchy really is. Because, low and behold; these very same countries are now left with societies with up to 50 million more men than women;
men who are mad they can’t find a wife. Men who are mad and highly violent because they can’t regulate their emotions through sexual acts with women. And men who blame women for not wanting to date them; not taking intoo account that if (litterally) every woman in the country had a man, 50 million men would still be withouth a woman.

The true irony here is that the more these patriarchs tries to hord control over social assets and the people they belong too, the more they destabilize their own system.

The Psychological & Emotional Reflection
Many men seem angry when women over 30 refuse to be silenced or manipulated. They call us ‘past our value’ as though value has an expiration date stamped in (often) pre-teen-youth. They either don’t see that women as they age carry more perspective, more resilience and more ability to name injustice. Or, they see it and fear it, knowing that they themselves were planning on being the reason for said injustice.

Because, the wall they speak of isn’t real. It’s a ghost story used to keep power. All women have to do is to reclaim the «crone»-achetype; not as a symbol of decay, but rather as a sign of mastery, female wisdom and peace. She is someone who cannot be controlled by sex, fertility or validation. And when women cross that imaginary barrier – when they refuse to shrink, refuse to become invisible — they walk into a space of truth.
There is nothing to apologize for in growing older. I mean – congratulations!
We’re not dead yet!

“The wise woman isn’t bitter; she’s just free. And freedom looks dangerous to those who’ve only ever known control.”
– Silje Elsrud Yttervik

Authorities, Thinkers and Books to Ground You

Riane Eisler, The Chalice and the Blade. She writes about the tension between “dominator” (patriarchal) models and partner/partnership models of society.
Evelyn Reed, Woman’s Evolution: From Matriarchal Clan to Patriarchal Family. Looks at early human social systems that were matrilineal before the rise of the patriarchal family.
Scholarly article: “Evolutionary, Developmental, and Comparative Perspectives on Menopause” — considers how humans and certain animals evolved life beyond reproductive age.

The Matriarch Returns

Despite a ton of patriarchs trying to frame it that way, Matriarchal societies is not about women ruling over men – it’s about balance. About remembering that the center of life was never meant to be domination, but care. Antropological research clearly shows that societies with more balanced gender roles, also create societies with less violence, higher social stability – and (generally) better lives for everyone; big or small, old or young.
The metaphorical wall they built for women is only a mirage.
And beyond it lies a throne.

A Task for you
Write a letter to your future self (5 or 10 years from now). Describe your power, your wisdom, your beauty. Then read it back. Let that future self know that you see them, and choose them, just as they are.

– Silje

The Shadowy Magic of Autumn!

There is no exquisite beauty… without some strangeness in proportion.»
– Edgar Allan Poe

Autumn is my absolute favourite season!
At first, the summer chatter simply quiets – and in its place comes the music of rain on windows, the sound of branches scarping against rooftops, and the sharp smell of leaves decaying into soil. Then, as the season reaches its full potential, the light bends low; mixing golden colours with rustic-red, fleeting; casting long shadows across the streets. The world seems to shift, with nature’s magic continuously moving closer, brushing past your skin like chill wind.

For me, autumn has always been more than a season. In a way, it is a return to myself. Or, a return to parts of myself that adulthood seems to freequently overlook.
As a teenager, I wore black lace and massive eyeliner, leaning into the gothic, nerdy and ‘strange’ shadows of the world. With age, I (as my mother rightfully predicted) ended up moving past that, strictly aesthetically speaking – but the echoes of those years remain within me. And every autumn these echoes grow louder and louder, rising again.

And as the season rises, dark and moody – the witchy parts of me grows stronger, bolder – and infamously more powerful!
Where other people see doom and gloom, I see beauty;
The gold agains black, the glow of candleflames from the outside of a rainsoaked area.

Every leaf speaks bliss to me, fluttering from the autumn tree.»
– Emily Brontë

To me, the «strangeness» of autumn brings with it a freedom that is difficult to recreate. It is a freedom away from the perpetual buzz of the summer season; freedom from the constant demand to be bright and vibrant and keep pace with the sunlight, which seems to grow continuously from the early days of spring, and freedom from the cold, slow and tiring days that winter often brings to the table.

Instead, in autumn, my fatigue no longer singles me out. Everyone moves a little slower, a little softer and a little quieter. With it, my disability simply blends intoo the rhytm of the season, almost invisible.
The world slowly begins to remember to take a step back, and rest – and in its pause, I come alive!

Leaning into the Gothic Essence

«Beware, for I am fearless, and therefore powerful».
– Mary Shelley

Darkness frightens many people. They avoid the shadows around them, pretending that beauty can only be found in light.
But, light without darkness has no meaning. And to embrace autumn is to embrace both. Thus, the best way forward is not to deny shadows as they appear – but instead to walk right into them.

Here are a few (easy) ways to invite the gothic beauty of autumn intoo your life:

Books for rainy nights: Wuthering Heights (Emily Brontë), The Picture of Dorian Gray ( Oscar Wilde), Frankenstein (Mary Shelley), or even modern gothic-tinged novels like Mexican Gothic (Silvia Moreno-Garcia).
Films with gothic energy: The Crow, The Craft, Beetlejuice, or Classics like Interview with a Vampire (I have also thus far really enjoyed AMC’s recent show-remake of the film). If classical- goth is not your thing, there are many other examples of similar energy, to help you step intoo the shadow. As an example, I tend to watch the series Good Witch on Netflix every october. It is a more modern version of witchy-energy, but equally suiting for fall. Similarly, my sister – who’s always been a massive fan of creepy, gory things, have for the past several years watched a horror movie every day of October, to prepare for the mood of Halloween.
Music & Atmosphere: Lean intoo soundscapes that match the season; moody piano, darkwave, or even storm recordings. Decorate with your favourite gothic aesthetics, whether it be candles, old photographs – or black and gold touches that makes the space feel enchanted.
Rituals: Dance freely, sing badly – or scream intoo the wind. Write letters to those you’ve lost, and invite them intoo your dreams. Or, light a candle in their honour. Walk intoo the rain, and listen to a world softened by water and shadow.

Truly, there is sooo much you can do! 😀

Autumn is not the death of summer, but the season of true transformation. During autumn, beauty and strangeness interwine. Shadows stretch long – but they are not here to harm you. They are here to remind you that there is magic in every falling leaf, every candle flicker, in every stormy night where you choose to stay awake with the ghosts.

So let the world grow darker. Light a candle, put on your favourite cult film – or pick up a true and tried gothic novel, and lean intoo it. Find the strangeness, find the shadows – and the beauty that burns bright!

Thus, when the shadows lengthens, and the leaves fall like whispers of time, don’t hide from the strangeness. Instead, step into it comfortably.
Autumn has always belonged to the ones who notice the odd, who dance with the strange, who lights candles not to banish the darkness – but to make it deeper, richer and more alive.
As Nancy once sneered in The Craft «We are the weirdoes, mister.» A line meant as mockery, but also as an anthem of invitation for those of us who thrive in the margins.

Let yourself be unordinary. Build altars from fallen leaves, turn your room into a chapel of flickering lights. Breath in the scent of wet earth as though it were incense. Because strangeness in not just survival – It’s celebration of freedom!

Or, to borrow from a certain ghost with a wicked grin:

«I myself, am strange and unusual.»
– Beetlejuice

– Silje
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– A task for you, reader:
If you were to find one gothic, or ‘witchy element’ to embrace this season, however small, which one would it be?
– How could you element this intoo your daily life, regardless of season?
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At the Ballot Box: Disability, Politics, and the measure of a Nation

«The measure of a society is found in how they treat their weakest and most helpless citizens».
– Jimmy Carter

This Monday, after months of arguments, political debates and pointless promises, Norwegian citizens saw the end of their latest government election cycle.
For many, this election was just as important (or not!) as any other election – but for those of us who live with disability, this ballot is both personal,urgent and heavy with consequence.

After the results were in tuesday morning, The left-wing parties, governed by the Labour party, won the election by a minimal margin. While I am personally not a big fan of the Labour pary, as someone born with a congenial disease, I am very happy that the left won the election – and very aware that this minimal win means that the right will win the next.

This is important to notice, because, while I am eternally grateful for (as mentioned last week), the laws that allowed my student debt to be erased – I also know how quickly those laws can be taken away. Because, despite the fact that Norway is one of the most equitable countries in the world, it’s still a country where people (citizens of all ages!) go on social media, and with their full chest out claim to hate the sick. They mock those of us on disability benefits, as if living below the powerty line is a choice we make for fun. For those of us (like me) who are able to work a little bit, they bark like dogs «If you can work – get a job!».

And to those who feel the need to behave this way, I ask; are you planning to hire me?

Because the brutal truth is that for the past two years, I’ve sent over 400 job applications, with barely any response. Whether these ignorant fucks are aware of it or not, the current Norwegian-work market, with their nepotistic- and discriminating practices, does not want people like me; people who need to live close to hospitals, people who can work a little bit now and then – and who are already banned from certain types of works due to their disabilities.

The choice left to us by the Norwegian work market is simple: full productivity at the same speed as everyone else – or nothing!.
Most of us wish to work part time, and contribute with what we can. But most employers expect us to function like the non-disabled – and, when we cant, quietly discard us from the marked – over and over again.
So we have to hover in limbo between wanting to contribute in the work-market, and being locked out, based on something we can’t do anything about – only to then be blamed for not contributing!
That is not laziness (as so many are quick to suggest) – its intentional, systemic exclusion.

Of course, it should be mentioned that such exclusion is technically illegal accordiong to norwegian law. But this does not seem to bother those responsible for hiring new employees. Instead, the general tendency is setting the bar for new (potential) employees so high that disabled people (in most professions) can’t reach it. Hence my overall quote of employers «looking for a 20-year old student-employee , with 25 years experience» (which is impossible!).

As a result, I no longer have any belief what-so-ever in the «equality/equity/fairness» of the norwegian job market. Instead, I’ve started building a part-time career for myself , out from my hobbies, and turning my creativity into a potential road to survival.
Because, if the doors wont open, I’ll carve windows instead.

And this is where this current election matters, as different parties carry different visions for the future. To use as an example:

Rødt (Red Party) is a Radical left party, loud about wealth redistribution and social justice. They demand stronger welfare protections, wanting to shield those of us who cannot shield ourselves, and push the hardest for equality.

Arbeiderpartiet (Labour) Is a centre-left, pragmatic party. They are the ones most invested in keeping the welfare state functional, though often in compromise with others. In general, Labour Speaks of solidarity, but their compromises often leave disabled voices in the margins.
Høyre (Centre-right/ Conservatives) is a Business-first, efficiency driven party. They are in no way enemies of the welfare state, but wish to «streamline» it. Through this streamlining they promise higher efficiency, but said efficiency often translates into cutting corners, stricting rules and including more hoops for already vulnerable, disabled people to jump through.
Fremskrittspartiet (Progress party) is a right – wing populist party. barely hides their distain for the welfare state, talking loudly about «lazy welfare recievers» and dream of shrinking public support. If you’re disabled, sick, or struggling, their vision is simple: less money for you, more blame instead.

While there were several other political parties at the ballott, these are without a doubt the most interesting, as far disabilities and sickness goes. The differences between them aren’t just academic either, but represent lived realities. For someone like me, voting isn’t about abstract ideology, but about whether I will still be able to afford the medication keeping me alive next year. Will I be able to built something from my hobbies, withouth being punished for trying? – and will I be able to keep my home?

The direction Norway takes in the future- whether it’s towards inclusion or indifference, will depend on how we mark the ballot from here on out.

«Prejudice is a burden that confuses the past, threathens the future and renders the present inaccesible».
– Maya Angelou

Prejudice is exactly what we face when society refuses to see us as citizens with value, reducing us instead to costs on a spreadsaheet. Now I am in no way waiting to be rescued, but I will always fight for a Norway where no one has to claw for basic dignity!

Because any society that punishes the weak and disabled for being born sick, contains extreme malcontent!
So, when the ballots are all counted in the future, I hope the voices of the vulnerable echo lounder than the noise of hateful contempt. Because that will tell us – and the entire world, who we truly are.

A task for you, voter:

Whether you are a Norwegian voter or not, I want you to ask yourself;

Whose vision of (your country) do you want to live under?
Are you voting for a country where disabled people are used as scapegoats – or citizens with dignity?
And if you’re amongst those shouting «get a job!» – are you ready to offer one?

– Silje

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Further Books & Resources
Justice Interruptus by Nancy Fraser
( essays on social justice, redistribution, and recognition).

Disability Rights and Wrongs by Tom Shakespeare
(critical reflections on policy and justice.)

Ecology, Community and Lifestyle by Arne Næss
( Norwegian philosopher on interconnectedness and dignity.)

The Norwegian Anti-Discrimination and Accessibility Act
Diskriminerings- og tilgjengelighetsloven
( – core protections for disabled people.)

Maps of happiness; on the hidden geographies of life

«Happiness is not a state to arrive at , but a manner of travelling.»
– Margaret Lee Runbeck

Happiness is not a straight road. Instead, it is a shifting geography, full of valleys, ridges and winding paths. Some lives are built like well-paved highways, others like dirt trails that must be cleared step by step. And some of us, perhaps, live on maps that were never fully drawn, forced to chart new routes as we go.
Because, whether it’s obvious to people or not, every life is like a landscape;
A house has its walls, a body its bones.
But what about a ‘soul’?
It might sound like religious mumbo-jumbo, but I personally don’t see it that way. Instead I simply see a human soul as a type of energy that may move from one physical person to the next – yet the actual energy in question stays the same.
Within such an idea, human souls have maps of their own, with rivers of memories and mountains of effort, valleys of grief, or plateus of joy.
These maps are then charted and re-charted throughout our life.

It is during these times that the highways most often travelled are quite often mistaken as the only routes worth knowing. But this is quite unfortionate.

As a disabled person, I often feel this truth in my bones. My body does not move easily along the «main roads» society lays out. While others may follow smooth highways, such as ‘ wake up early, work harsh, go to the gym, parent kids, cook, clean, relax and go to sleep early’ my own body can not keep up with this for very long. I sometimes face steep climbs, uneven ground or dead-ends; I mean, If it weren’t for coffee, I would not be able to stay awake for more than a few hours at a time, and on ‘work days’ I have no energy to work-out, and on ‘working-out days’ I need to seriously cut down the amount of daily chores, to be able to wake up the next day. And despite planning all of this beforehand, days can still crumble at my feet due to my daily seizures.

The Blind Spot: Disability as Geography
Writers and dreamers have always tried to draw the inner world of mankind. Carl jung spoke of archetypal terrains; poets of rivers and deserts within us. Early cartographers feared the unknown, and filled the edges of their charts with monsters and sea-dragons. Silence is scary. Slowness seen as failure. Pauses are treated like death.But slowness is not the same as absence. Stillness is not void. It’s a terrotory of it’s own, demanding a different kind of navigation.

«The queter you become, the more you are able to hear».
– Maria Rilke

Furthermore, every map – like every life has it’s own blank spots; whether dismissed corners, uncharted spaces or unexplored areas. But what if these empty spaces weren’t voids from a soulful energy – but equally as powerful, instead?
– all potential roads to further happiness.

This is where disability enters the map. Society says: you’re stuck, you’re left behind. You’re too slow, too fragile, too dependent. But here’s the truth: in enforced stillness, whole new geographies open. There are rivers of intimacy – conversation that go deepeer because they have time to. Valleys of observation – details noticed because they cannot be rushed past.
Fortresses of resilience – strength born not from running around faster, but from enduring longer.

Society builds highways and calls them progress. But what if the footpath, the garden trail, the detour intoo slowness held more truth than the asphalt? What if the lives that refuse to be measured by speed are the ones that actually reveal the shape of being alive?
Mary Oliver put it simply;

«To pay attention to, this is our endless and proper work.»

Attention is not a byproduct of speed. It is instead the reward for stillness.

Photo by Marco J Haenssgen on Unsplash — Image by: Marco J. Haenssgen @Unsplash

The Cartography of Self
Interestingly enough, all these detours in the ‘landscape of life’ are neither empty nor pointless. Instead, they carry their own cartography, and what others see as obstacles, I see as landmarks of resilience. What others call delay becomes time to notice hidden beauty; the shade or muscle of a tree, the echo of children’s laughter, or the texture of nice woolen clothing.

For those of us whose bodies carry limits or pain, the map looks different. What others mark as shortcuts, may for us be an impassable cliff. What other’s may see as a detour may be our main road.

Because. in these hidden geographies, happiness and joy takes root differently – in small landmarks, in resting places, and in the secret gardens we discover along the way.
This is not only about disability. All of us live by maps that shift. Grief redraws the borders. Love reroutes our compass. Even rest – as the simple act of pausing, can reveal a different landscape than what we thought we were walking.

The question then, is not where happiness is, but rather how we draw it. Perhaps happiness is never found in one destination. Perhaps it lies instead in the hidden maps we keep redrawing – the quiet coordinates of laughter with a friend, the unexplected alley of rest, or the compass of our values pointing us home to ourselves, again and again.
These are the geographies that shape a life worth inhabiting.

Because, we are meant to inhabit our homes fully, whether those homes are houses, bodies or landscapes of the soul. They are waiting for us to enter, to map them – and make them our own.

Rebecca Solnit once wrote that:

«walking is how the body measures itself against the earth»

– but I think the same could be said about living. Each scar, each memory, each day spent resting or striving or breaking or bonding, becomes a line drawn across the map of who we are. The mistake we make as human beings is believing the map never ends.

Sooner or later, our energy will run out. And when it does, I hope I will be able to look back at a landscape filled with immense experience. This is because, for me – I have always wanted to be able to experience most of what life has to offer.

– Silje

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A task for you, reader:

This week, sketch your own map of happiness. It doesn’t have to be beautiful or even accurate – just draw the roads, rivers, or landmarks that make up the hidden geographies of your life.
– Where are your valleys of rest?
– Where are your steep climbs of ambition?
– Where are the rivers that carry you slowly but surely forward?
– Which mountains have you been forced to climb, and what summits have you reached?
– What hidden gardens have you discovered along the way`?

Notice the blank spaces. They are not empty – they are waiting for you to fill them. And when you do, remember this: the world has always belonged not to those who run the fastest, but to those who dare to chart the unseen.

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Further reading:

Wanderlust: A History of Walking by Rebecca Solnit

The Art of Happiness by Dalai Lama & Howard Cutler

The Geography of Bliss by Eric Weiner

Atlas of the Heart by Brené Brown

Blueprints of a Body

Foundation:
Some changes arrive like a sledgehammer. Others are just the quiet scrape of a chair’s legs against the floor, moving it a little closer to the window.
Whether it’s the one or the other, the room changes – and you change with it.

We speak of transformation as if it begins in the mind ( – and in some cases it does!), but equally often, change starts with the body.
The mind may sketch the plan, but the body lays the foundation.
We grow older – our bodies change. We get new teeth, our skin changes, we gain or loose weight – we change.
Now, I’ve never been pregnant, but there are few things that sre able to illustrate thew co-operation and transformation between the body and the mind as well as that of a pregnant person.

«The space within becomes the reality of the building»
– Frank Lloyd Wright

In truth – the same is true of our lives – as the inner reality is built on the outer structure.

Framework:
A lowered shelf.
A better lamp.
A desk rearranged so the path towards it smooth and steady, as opposed to a minefield of small obstacles.

In the words of Virginia Wolf:

«One cannot think well, love well, sleep well, if one has not dined well».

In the consept of architectural aspects of the body, Wolf’s word may seem pointless or asinine, but for anyone interested in litterature, it’s obvious that she knew that comfort and clarity of thought require a sound framework – both literal and figurative.

For disabled bodies, this framework is not just about aesthetics. It’s about its structural integrity, which decides our survival.
Like lowering kettles just so they can be lifted up without risk. Or removing a lapm from a two-lamp light to make my space darker and less risky (I did this myself) given my light -sensitivity. Similarly, when my mother came home after her last chemotherapy-session, she was so weak and frail that my dad build large steel-hooks all around the house, so she could stand up/ or hold herself whenever she got too tired. Furthermore, I’ve positioned my bed (and myself) so that any seizure I have while in it, will (in most cases) prevent me from falling on the floor. In fact last year I had a huge discussion with my dad about potentially laying a rubbery floor on my bedroom for safety. I chose not to do so due to the difficulties this leads to in terms of cleaning – but had I not been such a clean-freak It might have been the best choice.

Openings:
Despite seeming like small transformations at first, these choices are not «small». Instead, they are blueprints – deliberate designs for how a body can inhabit the world around it.
As the architect Christopher Alexander once wrote:

«Every building, every room, every garden is better when it is shaped by the people who use it».

And here’s the gift; when you change the structure, the mind moves differently within it. A clear path between a chair and a bookshelf becomes a reason to read more. A brighter workspace makes you think braver thoughts. A door that no longer squeaks, feels like permission to enter.

Finishing touches:

«The ache for home lives in all of us, the safe place where we can go as we are and not be questioned».
– Maya Angelou

Changing your physical space is an act of claiming that safety – and, in turn, claiming yourself.

So of something feels stuck, don’t just sit and think harder – pick up a metaphorical hammer. Move something. Lower something. Remove something. Build a ramp, change a lightbulb, rearrange the shelves.

Because the bluepring of a body and the blueprint of a life are never seperated. They are drawn on the same page.
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At last, a task for you, reader:
Pick one physical change to your own environment that could open a door (litteral or methaphorical) for you. Then make it happen, no matter how small – and watch whatever else shifts.

– Silje

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Furter reading:
“The Poetics of Space” by Gaston Bachelard – a meditative exploration of how rooms, corners and thresholds shape our inner lives.

“A Pattern Language” by Christopher Alexander – a classic on designing spaces that truly work for human bodies and minds.

“The Life-Changing Magic of Tidying up” by Marie Kondo – about shaping surroundings to support joy – not just reducing clutter.

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

Disipline, doubt and disability: A new way of being

Earlier this week, quite by accident – a one year old video from Dr. K – on The Healthy Gamer turned up on my youtube-feed. The video: ( https://www.youtube.com/watch?v=0N0LV0mqTYQ&ab_channel=HealthyGamerGG) which I found extremely interesting, explains how recent studies in neuroscience suggests that disipline is an emotion; built by the emotional state of resolutuion to do/be something. When we as humans feel this resolution, we act in accordance with it – which in the long run creates disipline. On the other hand, when we don’t do this, it’s because another emotion has taken over – usually the feeling of doubt.

As fascinating as this video was, it did make me question my own place in this equation. After all, all the resolution in the world won’t make my disabled needs go away. I might decide that I wish to go to sleep/ wake up at the same time every day – a typical example of disipline; but I cannot force myself to fall asleep, and will ultimately experience the damage, when I get massive seizures after 3 restless nights.

Some days, I wake up and feel seizures on my skin before it arrives; like a tidal current underneath my ribs. Or I wake up in the middle of a 12 hour long migraine; dizzy and nauseous. Those are the days where my body needs rest and slowness – and no amount of resolution is going to make my seizures not arrive, or my migraine go away. Those days my body will be too busy just existing. This is the case for many disabled people.

Yet, society still expects us to perform disipline – as if disipline was a uniform we simply forgot to put on. As if all we need is a better routine, a stronger mindset, or a bullet journal blessed by productivity gods.

And, funny enough – this lack of ability to perform the uniform of disiplin, is also a large creator of doubt. For disabled people – especially those of us with neurodivergent brains, this doubt is trained intoo us, often from a very young age – by a world and a society that measures our worth based simply on output.
Which again, makes disipline even harder to accomplish.

«You are not a burden. You are carrying one.»
– Unknown

Many of us were told from the start that something is wrong with us. That if we simply try harder, thought differently, moved better or masked more effectively – we could fit in. But we won’t. Not because we are broken or bad, but because the system’s aren’t made for us.

SO, what exactly does this have to do with the emotion of disipline?
Well, in the traditional sense, disipline demands consistency. This is difficult when your body needs daily shifts and changes, due to seizures, pain-flares or fatigue.
Difficult does not not mean impossible, however – and I do not think disabled people have to throw out the idea of disipline in its entirety.

But, we might have to rewrite it for ourselves.

For people like me – born intoo disability, navigating it’s weight and wonder on a daily basis, disipline cannot be measured in hours worked or goals crushed. It exhists instead in our resilience, our adaptions, and our refusals to give up on hope.

Sometimes disipline is just getting out of bed, even if it’s not at the same time every day – as the act of getting out of bed is resolution enough. At other times disipline might be listening to your body and simply staying in bed, making sure you get enough rest.
For me, disipline is writing a post every week, even if I am tired and in pain, as I told myself that I would do it.
At other times, disipline is saying no to things or people you know aren’t good for you, or asking for help when needed, – and letting people believe what they want about you and just continue your day(s) anyway.

https://unsplash.com/photos/grayscale-photo-of-man-riding-bicycle-on-bridge-McIgiweVTf4?utm_content=creditShareLink&utm_medium=referral&utm_source=unsplash — Image by: Ben Allan @Unsplash

«We can do hard things. But not all things. Not all at once. And not without rest».
-Glennon Doyle

Now, let’s be very clear; feeling doubt in ones own ability is not laziness. Doubt is what happens when you’ve been told your existence is too much for other people. When your daily efforts go unseen. When every headline, every cruel «think-piece» and every lazy professor-quote paints you as a societal freeloader instead of a fighter.

Whether I accept it or not, I was born with epilepsy. I have several seizures (big and ‘small’) every day. They leave me confused, exhausted, oftentimes wrecked and disjointed. And yet I still hear the advice try harder.
Even worse, for many years, I gave myself the same advice.

As such, the real question that we should ask ourselves, is what exactly are we supposed to try harder? We wouldn’t ask a blind person to simply try harder to see, or a paralyzed person to simply try harder to walk. So why are we allowing ourselves (or other’s) to do it to us?

Whether you believe it or not, your body isn’t broken. But people’s assumptions about it is!

As one of my best friends once said regarding my difficulty of getting intoo the workforce; I guess it depends on what kind of society you want to live in. I don’t want to live in a world where everyone are the same, and all other’s are kept outside.

So, I think it’s time for everyone who claims to support disabled people – to stop holding us to neurotypical, able-bodied standards.
Instead, we need systems built around sustainability, adaption and dignity.

«You do not rise to the level of your goals. You fall to the level of your systems»
– James Clear

So if you want to support disabled people in feeling empowered, capable and disiplined? Start by:

Believing us when we say we’re tired.
Making space for non-linear progress.
Valuing slowness, softness and rest as forms of strength.
Funding our needs without shame.
Listening to us when we speak.

Because you cannot measure disipline in hours. You measure it in honesty. You measure it in survival.
You measure it in someone still trying to create a life worth living – even when the world refuses to help build it.

My idea? – If the world won’t help disabled people build it, let’s build it together, ourselves.
By redifining what sucess, disipline, and resilience look like – not by ignoring our limits, but by working with them.
By creating communities where pacing isn’t shameful, and rest is respected. Where resolve and resolution doesn’t mean perfection – but practicality and presence.

As such, disipline for us might mean holding onto joy in a system built to exhaust us. It might mean learning when to stop. Or when to start again.
And if you ever feel that doubt creeping up on you, trying to stop you from dreams and goals that really matter – remember:

you’re still here.
You’ve made it this far.
And that too, is discipline.

– Silje

Lazy? No – but born disabled, and tired of being your scapegoat!

This week, I had several massive epileptic seizures. Not metaphorical ‘massive’ – or ‘bad days’ massive, but real – body-breaking, tonic-clonic seizures. These are the seizures I hate the most, and the weeks that I have several of them, well – quite frankly, it’s dangerous. They come, completely out of no-where, frying up my brain to the point where it takes several hours to get back from feeling slow and foggy. And then, in addition to feeling like your head is about to fall off, the muscles in your entire body is burning, joints may be out of place, bruises are forming everywhere – and there’s a constant question of whether the current bumps forming in your head warrants a trip to the emergency room, or if you can avoid it.

These elements after the fact, does not just go away once the seizure is over – no, it can last for days, as your body is re-mending. This time I was unable to sleep for an entire day, as I couldn’t turn my head, couldn’t use my right arm and couldn’t sleep on my back.

And while I sat there, aching – flickering and trying to reassemble myself, something else was happening as well. Norwegian Professor, Ragnar Torvik, in a widely circulated opinion-piece, decided to tell the Norwegian country that people like, well – me (that is, government-funded, disabled people below and around the age of 30) – we are simply lazy, and the most dangerous thing to happen to Norwegian society. His words circulated in (as far as I know) several major newspapers in Norway – I personally read it quite unintentionally in Bergens Tiende.

Now, it should be said, that while Torvik’s co-called «analysis» might have been aimed at systemic numbers, the impact is always deeply personal. Because, I never chose to be born, I never asked to be born with epilepsia, EDS and all other genetic impracticalities that is in my veins. In fact – I’ve worked for most of my life, pretending that these things were a non-factor, and what do you know – it only made me sicker!

Now, don’t get me wrong – are there people who don’t want to work, and who pretend to be ill? Sure.
Are the majority of government-funded under 30s just pretending-disability? ABSO-FREAKING-LUTELY-NOT!

Because, when you – as Torvik and his (many) followers paint a brush that wide, you hit real people. People who are already exhausted. People who’s been sick since birth! People who also know there’s nothing they can do to change the way they were born – but who still try every-day to to live in bodies that won’t cooperate, in a system that barely sees them.
And remember, those are the people who’s most likely to read-and care about these opinion-pieces. Because the few people who actually don’t wish to work, they couldn’t care less.

I didn’t ask to be born sick.
But here I am – living, enduring, adapting.
And now, apparantly – I am also being blamed.
___

However, let’s be clear about what’s actually happening here:
This isn’t an economic discussion. It’s a cultural story – one that is being written, once again about us, not with us.
And the narrative is tired:

«Young people don’t want to work!»
«Welfare is too generous.»
«They’re not really that sick.»

No data presented. No nuance. Just lazy scapegoating disguised as analysis.

As Alice Walker once said:
«The most common way people give up their power is by thinking they don’t have any.»

So here I am – reclaiming mine. With words. With truth. With the full, inconvenient weight of my disabled body, and the lived experience that follows along with it.
Because I may be tired, but I am not silent.

The point of the matter is as follows;
I have complex epilepsia.
It was not caused by poor choices, or lack of work ethic, or too much time!
It’s neurological – and most likely lifelong. I was born this way – and until the day I die, I will have to live this way.
And believe me, that is no-small-thing.

For me, it means, a couple-handfulls of medications at least twice a day – and another handful to get over all the side-effects.
It means pysiotheraphy 3 times a week, just to keep your body afloat, and regular visits to several doctors to make sure things are ok-ish.
It means not being allowed to drive a car, and the likelihood of being picked up by an ambulance every-time you’re on a buss or a train. It means not being able to take a shower or (even worse – a bath!) without someone watching you. It means using filtered-glasses daily, even just for going to the toilet. It means needing everything from 9-17 hours of sleep every day. It means the likelihood of not ever getting a job (regardless of how much you can work) – and no matter how ambisious you are, because todays job-market can’t handle someone with daily seizures.
And apparantly, it means being blamed for all bad decisions government(s) make, because Its so unfair that I should be payed for all the medications I. Need. To. Stay. Alive!

Now, I’ve spent years working to stay upright and engaged. To build a life that fits the rhytm of my body. Not because I gave up trying to surpass my disabilities, but because I knew I needed to take my disabilities into account If I wanted to survive. And I fought like hell to do so. Still do!

And yet – here I am, lumped in with imaginary, lazy people, treated as a burden by those who have no idea what it means to wake up in a body that constantly betray you – and an unopperative brain that is either going to give you seizures, or (if it were to be operated) likely make you blind.

Know that, we aren’t «outside of the workforce» because we want to be. We’re outside because the world – and workforce was designed without us in mind.
I know many people (myself included) who’ve been denied work, face-to-face because of disabilities. Even though this is illegal discrimination according to Norwegian Law. So my question is, why are we – the sick and disabled, blamed for not working, when (in most cases) the only reason we aren’t is because those payed to hire us, choose not to?
_____

You don’t know how much it costs me to take the buss. Or how long I need to recover from grocery shopping. You don’t see my physiotheraphy appointments, visits to the chiropractor, doctor, neurologist, the medical side-effects I deal with every day, knowing I’ve tried all the medications I can (litterally!). And you don’t see the shame of asking for help to pay my bills, in a society that punishes dependence.
As author Sunaura Taylor writes in Beasts of Burden:

«The able-bodied world cannot imagine our futures because it refuses to accept our present.»

Because, that’s the heart of it, isn’t it? They don’t want to see us. So they call us lazy instead. Because that’s easier than confronting the fact that some people can’t be ‘fixed’, and never needed to be.

___

However, all is not without hope. For example, this post is inspired by a beautifully sharp and honest Facebook post from a Norwegian legal-expert, which was later published in the paper Aftenposten: (https://www.aftenposten.no/meninger/debatt/i/GyWPkQ/arbeidslivet-maa-endres-hvis-flere-ufoere-skal-i-jobb)
His words are like oxygen i a room that has gone stale. It’s a reminder that we are not imagining this. That we’re not alone. That someone out there get’s it.

Because here’s the truth:
This has never been about policy. It’s about power.
It’s about who get’s to speak. And who get’s to exist without apology.

So, If you’re disabled and feeling crushed by this current rhetoric – I see you.
This is not your fault. This isn’t on you to fix. And you are not ‘lazy’ just for living in a body that demands care. Remember:

You are allowed to rest.
You are allowed to need help.
You are allowed to exist without having to prove your worth.
You are allowed to be sick without being a scapegoat.

Rest is not resignation. Support is not shameful. Your life – just as it is, is worthy of respect, protection and piece.
So if you have the energy; speak up! Share your story. Vote. Organize.
And if all you can do today is survive; like me yesterday; then you’ve already done more than they could ever understand.

And finally, to Professor Torvik, the ones who gave him platforms – and all the people who mindlessly follow the same rhetoric; You failed in your humanity.
Because I refuse to be a scapegoat to someone who doesn’t even understand that sickness can come to us all; from tiny babies to pensioneers. And thinking it’s easy to just ‘get a job’ for those of us who are sick, just illustrates how little you actually know.

– 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