On disability, ambition, and becoming the person you were meant to be
There is an assumption, and a created narrative I’ve encountered again and again throughout my life. The assumption is simple: «Becoming disabled means losing your future».
This type of narrative is not meant litteraly so, but in a practical sense, through time; it’s as if piece by piece,the life you envisioned dissapears. It might be the career you imagined, or the independence you wished for, the relationships you dreamt about, or even the person you imagined yourself becoming.
And from my own personal experience; if you spend enough time around illness, hospitals, and within a variety of social systems – you begin to hear this assumption everywhere.
Sometimes is stands out in the open hallway amongst patients or medical-workers. At other times it’s wispered quietly, disguised as concern between your family, or your friends.
And sometimes; narrated as a helpless fact and a breath of realism,it might come from your own internal voice.
But it is a narrative I no longer believe in.
Instead, lately – I’ve been rendering on a different kind of question. Because, what if the life I want still exist, If only I’d let it? Not untouched by illness. Nor free from reality. But still there – and still possible.
And on that note – if my dream life still exist, how would I make it?
My limitations are real. But they do not get to decide who I become.» – Silje Elsrud Yttervik
Today, I think one of the greatest tradegies many disabled people experience is not illness itself. Rather, it is the gradual loss of imagination, as we stop allowing ourselves (intentionally or unintentionally) to dream.
And this is not because we no longer want things in our lives. But because we begin to asssume that we’ll never get them. Thus, the pain becomes too big – and the consistent dissapointment too substantial. So we just… lose all hope. Because hope feels too dangerous.
So we lower our expectations in life…
Then lower them again…
And lower them once more…
Untill we eventually stop asking for what we want altogether.
Instead, we start asking for what seems realistic. And while realism certainly has its place, I am not convinced it should be allowed to run our entire lives.
Because, truth be told, everyone has limits!
Some are financial, others are social. Some limits are physical – some are psychological.
The difference is that disabled people often see our limits more clearly than everyone else. Because they are (often) highly visible. Often heavily documented and measured. Sometimes even diagnosed
And because our limits are easier to identify, society often mistakes them for the entirety of who we are.
But remember, a limitation is not an identity! It is simply a condition that must be worked around.
For a very long time, I believed that becoming the woman that I wanted to become, I had to wait for society to give me some sort of permission to do so; – permission through employment – permission through approval – permission through systems that recognize my value through the variety of life experiences I have, that are both rare and unusual.
But the older I get, the less interested I become in waiting. Because, while these systems play a part – they do not own my imagination. Nor do they get a say in ME reaching MY goals. And they certanly do not own my future!
And perhaps the most important part is that, this does not mean ignoring reality. I am not in any way, shape or form interested in pretending that illness does not exist. My epilepsy exists. My limitations exists. And my health matters to me, deeply.
But there is a difference between building a life regardless of your limitations, and building a life with limitations in mind.
The first denies reality. The second respects it. And for me, this is where my own freedom of imagination lives. Not in pretending we have no limitations, but in refusing to let those limitations become the only thing that define us.
So, my plan moving forward is surprisingly simple. I am going to continue becoming the woman I want to become. Not despite my disability, nor regardless of it – but rather alongside it.
I will take my limitations intoo account. Adapt when necessary. Rest when rest is needed, and ask for help when I have to. And just… continue.
Because, I am no longer interested in spending my life proving that I too am worthy of big dreams and ambitions.
I am interested in pursuing them…
«Silje pursuing her dreams» – Made with the help of AI!
As such, maybe that is the real lesson disability teaches us. Not that our lives are over when illness festers, but rather that everything we do in life becomes highly intentional.
Every choice we make matters more, every goal we reach matters more – and every relationship; (romantic or platonic) that we invest time and energy intoo, matters more.
Because, when limitations are real and highly visible, we stop taking possibilities for granted!
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A small task for you, reader…
Ask yourself; «If I stopped asking for permission, what kind of life would I want to live?» Consider your own limitations, big and small – and consider potential steps you could take around them.
Shut down the assumptions, reframe the narrative. Be creative!
Then, decide on one small step towards your dreams – and commit to doing it within a week!
Why disabled people need a different filter for self-improvement culture
There is a great deal of advice online these days. Some of this advice is absolutely excellent. Some of it has helped me severly improve my life.
And some of it, while well-intentioned- becomes surprisingly harmful when applied to disabled people.
Recently, I came across a very sucessful entrepeneur argue that people should take complete and full responsibility for the trajectory of their lives. Now, I understood what she meant by her statement. In many ways, I even agreed with her.
Personal responsibility matters!
But as I listened to the video, I found myself asking a few very simple questions; How exactly am I responsible for being born with epilepsy? And – What am I supposed to do about it?
Because, there is a vast difference between taking responsibility and control over what you do in your life, and taking responsibility for things you never controlled in the first place.
And I think many disabled people spend years carrying the guilt of that distinction.
Because, Responsibility is not the same thing as control.
In fact, one of the most important lessons I have learned as a disabled adult is that responsibility and control are not the same thing. – I can take responsibility for taking my medication at the apropriate times. – I can take responsibility for laying off caffeine, alcohol and all other things that negatively affect my disagnosis. – I can take responsibility for exersizing when my body allows it, eat well by making sure my money prioritize it, and take responsibility for how I talk to myself, how I spend my time – and generally stay on top of my health; whether physical, dental, mental or emotional.
But i cannot take responsibility for being born with epilepsy. That is beyond my control. I cannot take responsibility for having seizures daily, even after doing everything I possibly can to avoid them. And when they do appear, I cannot take responsibility for getting a concussion, for having to avoid workouts or needing longer hours of sleep, leading to not being able to wake up as early as is recommended.
And this distinction matters.
Because, many forms of self-improvement advice quietly blurs the line between what we influence and what we control.
And once those things become confused, disabled people often end up blaming themselves for circumstances they never had any control over to begin with. Things that were never theirs to choose.
«You can do anything if you want it badly enough»
This is probably one of the most common pieces of motivational advice in the world. And it is also one of the least accurate.
To use an example from my own life: I cannot drive a car. This is not because I don’t want it badly enough. Nor is it because I can’t find a car to drive if needed. No, I cannot drive a car, because Norwegian law requires people with epilepsy to be seizure-free for at least a year, before driving. This law has changed significantly througout my life; from 3 years to 2 – and now 1. But I have never been able to reach the appropriate requirement. Which meant that I have not been able – (or allowed!) to practice driving, thus have not been able – (or allowed!) to take the test for a licence. And no amount of motivation changes that reality for me.
I cannot simply change my seizures on bare belief alone. And I cannot simply change the law purely by wishing it. (And in all honesty, I would not want to either, as I would find it irresponsible!)
In a similar fashion, a paralyzed wheelchair user cannot simply decide to walk. A blind person cannot simply decide to see. And, a person with chronic fatigue cannot simply decide to have more energy.
We can only work with our current circumstances;
by adapting, learning and growing as people. But we cannot simply wish biological realities out of existence.
And truthfully, there is something strangely liberating about accepting that. Because, once we stop fighting reality, we can begin building lives that actually fit it.
Now I still have high hopes for disabled people in the future. Hopes of high employment, through changing the current system to one more sustainable for all people. Hopes of hight accessibility to nessesary treatment, by lowering cost, and building knowledge. Hopes of low stigma, by making medical diagnoses more open to talk about, and hopes of a world where everyone can live, withouth feeling at fault for being born disabled.
So, here is a list of advice, disabled people should probably leave behind…
There are a few pieces of popular advice that I think disabled people should approach with caution.
X «Your life is entirely your responsibility.» This is partly true, but ONLY partly. Genetics matter. Health matter – and access to healthcare matters. Economics matter, discrimination matters. And – the country you were born in matters. Pretending otherwise is denial of reality; and no amount of empowerment speech is going to change that reality.
X «Never depend on anyone» Humans are social creatures. And every successful person depends on someone; Family Friends Partners Parents Assistents Coworkers Teachers Communities Doctors Support workers.
The myth of complete independence is exactly that – a myth.
X «If you’re not succeeding, you’re making excuses.» Sometimes people are making excuses, there’s no going around that. Other times however, they are facing genuine barriers that they cannot cross.
Learning the difference between which is what, is a form of wisdom not easy to find.
On the other hand, here is a list of advice worth keeping!
Fortunately, not all self-improvement advice falls apart under scrutiny. Some of it becomes even more valuable when viewed through a disabled lens.
V: Build daily agency Agency is not about controlling everything from hell to heaven. It’s about controlling something. It can be relatively easy things, like; making your bed, taking your medication, answering your emails or keeping track of your finances.
It can be about going to the gym, or going for a walk, or cleaning and organizing parts of your area.
Personally, my current daily agency is very simple; – 1 task of body movement: like stretching, going for a walk, or working out with a physiotheraphist. – 1 task of contribution to the home: cleaning, grocery shopping, making dinner or being an emotional support for the rest of my family. – 1 task of mind growth: reading, writing, learning or slowly building a skill. – 1 task of future-improvement: writing a blog, working on my newsletter, a future charity organization, taking pictures or videos, or slowly making my books.
Whether big or small, these tasks of daily agency do not cure my disability. But they have four very important focus-points, that help build confidence, self-esteem, self respect, and momentum over time.
V: Focus on what you can influence Instead of going all in at once, find something. Just something that a simple change in your daily system, weekly habits or yearly goals can influence for the better. You do not need complete controll to make progress in life, you just need a place to begin.
V: Build interdependence instead of chasing independence Out if all the lessons I have learned in my early adulthood, this is probably the most important one; The goal is not independence for the sake of independence.
The goal is a meaningful life. And sometimes that includes help. Sometimes it includes support. Sometimes it includes accomodations. And there should be no shame in that.
In fact, most societies have always depended on people helping one another. The African proverb «It takes a village» does not come from nothing.
V: Define contribution more broadly I believe one of the greatest failures of modern society is how narrowly it defines value. Because, contribution should not be limited to paid employment, as many people contribute through a variety of different ways; – caregiving – volunteering – art – mentoring – friendships – emotional support – community building – and countless other forms of labour that rarely appear on a payslip, yet is completely needed in any society.
«Alone we can do so little; together we can do so much.» – Helen Keller
I think disabled people often understand this much better than most. Because, our lives often forces us to recognize something many people spend years trying to avoid:
No one succeeds entirely alone
«Do not judge me by my successes, judge me by how many times I fell down and got back up again.» – Nelson Mandela
This quote resonates with me far more than most productivity sloagans ever could. Because resilience is not the absence of limitation. It is learning how to continue despite of it.
What the research says
Psychologists, such as Edward Deci and Richard Ryan have spent decades studying what helps people thrive.
Their Self-Determination Theory suggests that well-being is strongly linked to three core needs;
-autonomy – competence – and relatedness
To put it in other words, people flourish not because they work harder than everyone else, but because they have meaningful choices, opportunities to succeed, and supportive relationships.
I personally believe that is a far more nuanced picture than the idea that success is purely an individual responsibility. And honestly, feels much closer to reality.
Silje Hjemme By: Silje Elsrud Yttervik
The truth I keep returning to
Now, of course, before someone tries to take a whip at me, as I mentioned in the beginning of this post; personal responsibility is important. And the disabled people that I know, are some of the most responsible people I have ever met. Because, we have to be…
We track medications, we manage symptoms, we attent various appointments, and navigate systemt. We adapt constantly!
But you cannot know what you cannot get to know – thus to us, a lecture about personal responsibility tends to fall flat. What we need, instead, is advice that recognizes reality. Advice that understands the difference between responsibility and blame.
And this is huge – as good advice helps us build lives within our limitations, instead of pretending those limitations do not exist. This does not mean to never test your own limitations; we all should! But in a safe and sustainable matter.
Because, for us, going too far too quick, very often lands us in a hospital bed, considerably worse off then when we started. I surpassed my limits once in my early 20’s, and ended up with a burnout, worse seizures and a massive fatigue – that I have still not recovered from almost 10 years later…
Good advice – real good advice should make people stronger. It should not make them feel guilty for things they’ve never had the power to control. __________________________________________
A task for you, reader…
Today, make two lists:
On the first, write down three things you genuinely have influence over. On the second, write down three things you have been unfairly blaming yourself for. Then compare them.
You may discover that one of the heaviest things you carry were never yours to carry in the first place.
So, I wrote about a similar subject a few weeks ago, but really wanted to approach it again – from a slightly different point of view. Because, I find that there is a strange assumption in modern society, that lives worth living must always be LARGE; Large careers, large social circles, large ambitions, large houses, and large scedules. As if you’re always expanding, always moving – and always, aaaalways visible to everyone and everything – always!
And, in that same aspect; if your life ever becomes smaller than this, or moves a bit slower – and in general seem more contained, people often assume that something is, well – wrong.
But, I am beginning to think that maybe the opposite is true. Because, my life is not small, not really – it’s just built around different measurements all together. My life, built for me and my needs, are planned around adaptation, and especially the adaptation of unpredictability. Because my health can – and often have changed suddenly, and withouth warning.
And, while it is true that this kind of life requires a certain limitation to it, it also creates something else:
A profound appreciation for even the most miniscule forms of happiness!
Especially during the last few years, I have begun to believe that many disabled people experience joy a bit differently than the rest of society. This is not necessarily because our happiness is lesser than others’s – but because we have become deeply aware of how fragile ordinary life actually can be.
So, simple things like a peaceful morning, a good cup of coffee, a clean, fresh and organized apartment, a good conversation, a creative evening before bed. – Or, in my case, any and all (positive!) changes to a general routine, can make me feel like I’m at the top of the world!
These sort of things are often treated as insignificant by the outside world, so they stop noticing when it happens. But when your body and mind is unpredictable, ordinary peace and ordinary happiness can quickly become extraordinary!
And perhaps that is why ‘disabled joy’ just to put a name to it, can feel so intense at times. Because we notice all the little things many people rush past.
«When one door of happiness closes, another opens.» – Helen Keller/ @The American Foundation for the Blind
I should preface by making it clear that I do not nesessarily think that romantizicing illness is the way to go. Nor do I think that the loss of something due to illness should automatically become a form of inspiration.
I do however think it is important to recognize that chronic /physical- or mental diseases in life, does change the way we see things. And in just grieving the life we imagined, we fail to notice the new, simpler forms of happiness growing beside- and in front of us.
For a long time, I though happiness existed somewhere in the future. In becoming healthier, more independent, more productive – and just more ‘normal’. But I am healthier now in my mid 30’s than I’ve ever been. 10 years ago I was more independent than I am today, and 20 years ago I was definately more productive. But my god, I can swear that I have never been ‘normal’ xD!
So instead, the older I get, the more I realize that ‘being happy’ is much less dramatic than what my younger self assumed.
Sometimes, it is simply building a life that your body can survive in as it is; with enough energy, and room to breathe. And strangely enough that simple adjustment in the way I see happiness, have not in any way made my own life emptier – in many ways it has made if fuller.
Disabled joy is still joy
I also think disabled people are often spoken about only through our suffering. (Which I too am a part of!) And this is not fair. Because the way we are spoken about, (and at times speak about ourselves), it would seem as if our lives are automatically tragic. As if our pain cancels out all the beauty in the world. But this is of course not the case! Because, disabled people fall in love, create art, laugh at stupid jokes and become obsessed with books and TV shows as much as the next person. We decorate out homes to our tastes and our advantage, drink coffe with friends and dream about our future.
We experience beauty the same way everyone else does. Somethimes even more so than other people. Because, when you understand how quickly life can change, joy and happiness stops feeling guaranteed – and instead starts feeling truly precious.
Another thing is that it is something deeply humane about creating a life that fits the person supposed to live in it. And many disabled people become incredibly intentional about their surroundings. Whether it be specific routines, lightening, blankets, specifically easy to hold mugs, a bookshelf full of creative art, musical equitment or specific decorations. Whatever it is, I do not think this is a superficial element – not really. Instead I think that when your body feels unstable and difficult to control, creating a form of external stability becomes a form of peace .
«The world is full of suffering, but it is also full of the overcoming of it.» – Helen Keller @Wikiquote.org
Modern research on well-being also increasingly suggests that happiness is not built only through achievement, but through meaning, social conncection, stability and environments that support our needs. (arXiv;Linguistic Reflexes of Well-Being and Happiness in Echo).
And perhaps disabled people just understand this fact earlier than most, as we are often forced to ask ourselves a question many people avoid: – What would actually makes my life feel livable? Not impressive, nor profitable. Not even socially admired, but livable.
For me, that means living in a stable home, where I can be financially relaxed. It means sleeping enough (between 10-12 hours ), and have a clear, relaxed routine in the morning and in the evening, as I very easily get stressed. It means committing time to write and to other forms of creativity (mostly every week) to feel a sense of meaning in my days, and to workout to keep growing strong. It also means leaving enough time to eat, to hang out with friends every month, and enough time to just sit with my thoughts. And lastly, it means opening up space for a monthly spark of ‘flexible form of happiness’ come whatever may.
So sure, from the outside my life may not seem very big or impressive. It is slower than many other’s , with far less noise and far less friction. But it is carefully structured to function for ME. The amount of peace I need, the ability to be as creative as I can manage. To fill it with all kinds of beauty and meaning that makes sense to me, even if no one else gets it.
It is also filled with joy; small and big, wide and narrow. And to me that matters much more than living big just for the sake of it, ever could…
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A small task for you, reader… Tonight, try to notics one small thing that genuinely made your day better: – A drink? – A routine? – A moment of stillness? – A clean room? – A good text message? – A book? – Or a soft blanket?
Then ask yourself; «What makes this insignificant? What would make it not so?».
Maybe happiness is not always found in building a bigger life. Maybe sometimes, it is found in building one that fits your own size!
«To be ill is to be a kind of ghost.» – Susan Sontag
Autum has always been a ghost season. Here in the Northernmost parts of Europe, autumn is when the light begins to thin, the air sharpens; beginning to sting. Whether we recognize it or not, the world turns heavily inward, shedding what no longer belongs.
However, for many of us who live with chronic illnesses or disabilities, this part of the autumnal season, never really ends – it simply changes its shape throughout the year. In a way, its like living between two worlds; halfway in the visible – halfway in the invisible. And through this, we learn to hold our own ghosts close.
The Ghosts of What Could Have Been A few years ago, I was admitted to a specialist neurological hospital to try out new epilepsy-medications. While there, I met a bunch of people who – like me, had their lives recently split in two. Many of those admitted with me had recently developed epilepsy at an adult age; whether through hormonal issues, car-crashes or even through brain tumors. It was as if one day they were out driving cars, working high – risk jobs at oil platforms and raising their children without any further concerns; then the next day their bodies and brains turned unfamiliar and unreliable.
While these thing never happened to me, seeing as I was born with this condition – I remember feeling such an ache for them – for what they had lost. Yet, beneath my empathy, I also felt deeply grateful, and a strange kind of relief that I was lucky enough to not know the feeling of such a massive before – and – after. Because, yes – I still remember my late teenage years, and early 20s, where I had considerably fewer seizures overall. But the knowledge that seizures could come any second was still there – and certain things like driving a car, or working with heavy machinery was still kept unavailable to me. My point is that my body has always been this way, thus I’ve never had to mourn the life I once had – as there was no «before» to loose.
So in a way, we met in that quiet hospital ward, as two kinds of ghosts: those angry and deprived; haunted by who they used to be – and those fascinatingly adaptable; more so haunted by who we might have been.
And the thought still lingers in the building…
«We all carry versions of ourselves that never made it out alive.» – Silje Elsrud Yttervik
The Elegance of Survival Taking the concept of adaptability into full force, these days, whenever I go out in public, I always dress with intention; elegant, a little funny or chic – and very composed. Not because I tecnically have the energy for it everyday, but because aesthetics have slowly become my armour. Because, whether I personally agree with it or not – people are shallow. Most people respond to surfaces, much more than they themselves are aware of. The same can be said about me! And when I look polished, other people tend to treat me with the same level of grace.
From my part, this is not vanily – but strategy. In a world where disabled people are so often pitied, ignored or even seen as fragile beings – elegance becomes a ritual of survival. It’s how I remind myself – and others, that I am still here, still whole – and still sovereign.
Many people don’t consider this fact, but being visibly disabled carries a high risk-factor. Because, on the one hand, showing one’s disability is to open the door to danger. By openly announcing what might hurt or harm you – you (unfortionately) become a very attractive target to abusers and predators, who sense dependancy – and see opportunity.
On the other hand, for many of us – hiding our disability can be both completely impossible, as well as equally dangerous. To put two of my own experiences up against one another; once I didn’t have time to dress up, and had a seizure on the buss, when another passanger tried to rob me. He would have succeded as well, were it not for the fact that I carry all of my most valuable items at invisible areas (for this very risk) – and the only thing he got a hold of, was my building’s opening cards (which I just had to turn of – and get new ones). On the other hand, once I got a seizure on the buss, and was dressed too elegantly – and people were afraid to help me, fearing I would poorly retribute if something were to happened to me or my things.
To put it bluntly: If I conceal my disability too well, i might have seizures with no help nearby. On the other hand, if I show too much I migh become a target for pity or crime.
As in the words of Audre Lorde;
«Your silence will not protect you». – Audre Lorde
But, sometimes for us, it actually might.
In many ways, this is the paradox of disabled lives – to exist in a body that demands both revelation and disguise.
Living Between Worlds Now, there’s a quiet way in which disabled people live as threshold beings. We are always negotiating the border between visible and invisible, between what can be explained – and what can only be felt.
When I, like in last weeks post, say I can smell the snow coming weeks ahead, people tend to laugh – untill it happens. My body understands what the weather doesn’t yet say out loud. It hums with storms before they form, trembles with the shifting of pressure. It’s both inconvenient (at times) – and highly conventient at others.
Being disabled means returning to nature; we live by the signals of our flesh and bone – because we have to; the language of pain – because we have to; fatigue, scent and rhytm – because we have to. Adaption is the only way to get by.
And in some stange way; perhaps this is what frightens the rest of the world the most. Because we remind society of everything that is fragile – everything that is wild – everything that cannot be controlled.
«To be disabled is to haunt the able – bodied imagination – a mirror of what thet fear most: dependancy, vulnerability, and loss.» – Silje Elsrud Yttervik
A Small Spell for the Living The ghost season teaches us that there is beauty in what remains after the light retreats. In this dimness, we learn how to see differently – not with the denial of darkness, but with the devotion for what you still can see. Remember, adaption is the only way to get by…
So tonight, light a candle for your ghosts – the lives you lost, the bodies that betrayed you – and the dreams that shifted its shape. And thank them for what you learned from them.
Because, to live with such ghosts and not be afraid, is to know that you yourself is not what you’ve lost, but rather what survived the losing.
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Further reading/ Watchlist:
– The Body in Pain by Elaine Scarry
– The Argonauts by Maggie Nelson
– Documentary: Crip Camp (Netflix) – for a glimpse of collective survival and joy.
– The Disabled God: Toward a Liberatory Theology of Disability by Nancy L Eiesland
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».
Image by: Nick Andreka @Unsplash
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. ___
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.
«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.
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.
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.
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.
There is a moment every June where I feel like nature and I are breathing in rhytm. The Scandinavian landscape, once frail and schivering in spring, has grown intoo herself again. If the year were a person, winter would be the elder – slow, still, near the edge of life. Spring, ever chaotic, is the stubbord toddler: one day playful with the sun, the next throwing snow across the floor. But now? Now we stand in the long daylight of early adulthood – midsummer – when the world knows it’s own strength. The air hums with confidence, and everything green has become itself again.
As someone disabled, I live with a body that listens closely to cycles. I often feel out of step with society, but never with the seasons. And this time – the Summer Solstice (June 20-21 in the Northern Hemisphere) is one of the oldest markers we have. Long before this period was labelled St. John’s Day, after the brutal arrival of christianity in the North, people celebrated the summer solstice for what it is; the longest day of the year. This is a time of celebration, of fire and flowers, of shared meals and small magic.
In Sweden especially, Midsommar remains deeply rooted in pre-christian traditions: the maypole, the flowers wreaths, the songs – they are less about saints and more about earth, fertility, love, and the turning wheel of the year. And while modern celebrations often include some form of dancing, drinking, and energy many disabled people can’t access, I believe there’s still space in this day for all of us. And we can reclaim it, quietly if needed. Gently, honestly – with rituals that meet us where we are.
«And so with the sunshine and the great bursts of leaves growing on the trees, just as things grow in fast movies, I had that familiar conviction that life was beginning over again with the summer» – F. Scott Fitzgerald
As solstice celebrations in the North long predates organized religions, bonfires were lit on hills to honour the sun’s height – and was believed to protect against dark forces, and bless the crops. Furthermore, as a liminal time, herbs gathered were considered the strongest, and dreams on this night were believed to fortell the future. With christianity, the celebration was rebranded as the feast of St. John the Baptist (‘Sankt-hans‘ in Norwegian). With this, the celebration shifted its focus, but was never quite able to erase the old rites.
Especially in places like Sweden and rural Norway, the folk-traditions lived on – not (only) as resistance, but as memory and cultural inheritance.
‘Midsommar Maypole’. Image by: Mikael Kristenson @Unsplash
Today, when people dance around the maypole, or decorate with birch and wildflowers, they echo something older than any religion; a gratitude for light and growth, and a shared moment of joy in nature’s fullness.
So what about us disabled people?
Disabled people often live lives with bodies that resist the rhytms of work and linear progress. We move in spirals, not straight lines. We understand that rest is not failure, that some days are simply quieter than others – like nature itself. The solstice, then, becomes a time not just to celebrate brightness, but to acknowledge how precious it is. How fleeting. To mark the pause before the sun begins its slow descent once again.
Personally, I see strengt in this kind of witnessing. In choosing to light a candle rather than join a crowd. In picking flowers slowly, smelling their scent – and locking it as memory. In celebrating not with fireworks, but with breath and presence. As written in Kristin Lavransdatter by Sigrid Undset, one of my favourite books from my earliest schooling:
«She walked with the summer night wrapped around her shoulders like a warm, breathing shawl, and it seemed to her that all the earth was awake and wispering with life.»
Isn’t that exactly what midsummer is for??
Below I’ve written a few, small adapted rituals that can help you celebrate the solstice in a way that honours your energy, your acess, your needs and your spirit. Feel free to add things – or remove them, as you wish!:
Light a candle (gold, orange or green for the colours of the sun and growth) while setting an intention for the rest of the year. Personally I prefer to mix white, green and pink candles, as these are the colours of most of the trees/ wildflowers outside.
Pick wildflowers (or buy them) if possible, and make a small wreath, bouquet or altar offering (depending what feels right for you). I usually buy flowers, and leave the picking up to the many children in my area. I made an exception when my grandmother was alive, as her garden stood at such a spot that it was flooded with all kinds of wildflowers every year; yellow, pink, blue, purple, white – and so I used to make her a bouquet before my dad would go over with the lawnmover.
Dance in whatever way your body allows. Even if its just gentle swaying, moving your arms, or laying in bed vibing to the music. The clue is to feel the rhytm and the beat of summer.
Journal about what has grown in your life this past 6 months, and what you hope to accomplish next.
Brew a herbal tea using plants associated with midsummer (like chamomille, mint or elderflower).
Lie in the sun (don’t forget sunscreen people!) And bring a blanket, sunglasses and water to protect your skin. If you’re like me, however, and just cannot see the joy in this (being that it’s too warm, too bright and too sticky), I’ll advice sitting in the shadows, beneath some protective trees, with a large hat and a good book.
Watch a bonfire (live or on video) and meditate on what you’d like to release as the light begins to wane.
‘Wreath for Midsommar’ Image by: Fredrik Ohlander @Unsplash
We are told to seize the summer, to shine, to do more – but the solstice is also about the sun turning. Like a brief moment when the world stands still before shifting again. A breath held. A still point.
As disabled people, we can find great power in these quiet turnings – not needing to chase the sun, but to honour that it has come.
And perhaps this is what the old traditions knew: that joy is not just in motion, but in marking the light while we have it. In remembering that fire has always lived beside the shadow, and that both are part of the year, the body and the world.
“The Poetics of Space” by Gaston Bachelard – a meditative exploration of how rooms, corners and thresholds shape our inner lives. 
