Kategori: Personal

When Good Advice Becomes Bad Advice

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.

– Silje

The Lie of Disabled Equality

On contradiction, exclusions, and the truths society avoids to talk about

Society refuses to fully include disabled people, while simultaneously resenting the cost of excluding us.
– Silje Elsrud Yttervik

From my point of view, there is something deeply contradictory in the way modern society treats disabled people. On the one hand: we are told that all humans deserve dignity. That discrimination is wrong, that modern society values inclusion, and that all human lives matter equally.

On the other hand: the systems modern societies have built for their citizens, tell a very different story.
Within these systems – we; the disabled, are treated as massive burdens from the moment we require support.

And this arises many questions within me. Like:

  • why are disabled accomodations viewed as such an inconvenience?
  • Why are disabled workers so often excluded from the workforce, despite laws that strictly forbids said exclusion?
  • Why are those of us recieving disability support spoken about, as if we are stealing from everyone else?

    And perhaps most importantly:
  • Why -and how are disabled people expected to survive independently, in a system that actively refuse to include us?


The Impossible contradiction

If one takes a second to really think about these things, it becoms pretty obvious that society often demands two completely incompatible things from those of us who are disabled:
1) Be independent.
2) Accept that no one wants to hire you for pay, and that no one wants to provide you with livable means.

And when those two realities clash, it is us – the disabled, who are blamed for the outcome.
As if our illnesses, disabilities and/or cognitive dysfunctions, are moral failures.
And, as if being born different from the ‘assumed’ standard, is somehow a personal crime.

And unfortionately, more than anything, these types of impossible contradictions mirrors a society in which (generally speaking), disabled lives have no value on their own – and the remaining population lacks the integrity to clearly admit it.

What I want my work to say

Me @ Telemetri Examination

If there is one truth I want my own work to cover, it is this:
Disabled people are not lacking in value – it is the systems surrounding us that are lacking in imagination.
Contribution does not only exist in the forms society currently rewards.
Not everyone can survive inside rigid, square – fitted structures, built on endless fake energy, social performance and constant productivity.

But that does not mean we have nothing to offer!

Some people contribute through care. Some through creativity. Others through things like writing, thinking, organizing, supporting, observing, teaching, or just surviving .

And many disabled people spend their entire lives adapting in ways that require the most extraordinary resillience – only for that resillience to be ignored, because it doesn’t fit traditional systems of labour.

The questions society refuses to answer

There is also a much darker truth underneath all of this.
Because, at some point this contradiction becomes impossible to ignore.

Now, I do not think most people consciously hate disabled people. I do, however believe that many people lack critical thinking skills, and that many of these people are – simply put, deeply uncomfortable with us.
Because remember; independence is fragile. Health is temporary, And anyone can become dependent, at any moment. And instead of confronting this fear, society at large tends to project it onto others, and we – the disabled, remind people of this fact.

Which in itself opens an even worse thinking process…
Because, if society acts as if disabled people are fundamentally unworthy of support… then what exactly is the only logical alternative?
That is the question most people rarely wish to follow to it’s conclusion.

Because,
If a society refuses to give disabled people a sustainable form of paid work.
And people within said society believes disabled people should not recieve support.
And if survival requires this support in the form of money, housing, healthcare, food and stability…
Then what exactly is the intended outcome for the disabled people who cannot survive independently without it?

I mean, there are only a limitied number of logical conclutions to this.
Either:

  • Society must meaningfully accomodate disabled existence
  • accept that human value is not tied to their ability
  • and create systems where disabled people can survive with dignity

    OR
  • Society must admit that it is comfortable allowing disabled people to dissapear quietly through death, poverty, neglect, institutionalization, abandonment, or selective prevention before birth.

    Now, I do want to preface that I DO NOT want this to happen!
    But, from a current point of view, this is the only logical conclution.
    WHICH SOUNDS INSANE?!

And what hurts the most as a fellow disabled person, is not that disabled people don’t understand this logic – it is that many of us understand it perfectly, while the society around us insist on pretending otherwise.

What i actually want

Personally, I do not want any pity. And I do not want forced inspiration narratives. What I do want from people, however, is Integrity. I want honesty.
I want disabled people to become a natural part of society. Not as a symbol of something bad that could happen to anyone – but as people, point blank.

And if modern society, and the members of said society cannot provide that inclusion, then at least have the integrity to openly admit it!
Instead of pretending that equality already exist – admit that it doesn’t.

Because pretending disabled people are fully included while systemically excluding us, is just another form of cruel ignorance.
__________________________________________________

A small task for you, reader…

The next time you hear someone complain about disabled people recieving support, pause for a moment and ask yourself:

«what realistic alternative is actually being offered?»
If people cannot access work, cannot access pay, stability, and cannot access accommodation.
– What exactly are they expected to do?

Sometimes, in my opinion, the most uncomfortable questions, reveals the clearest truths.

– Silje

Your Life Does Not Have to Be Big to Be Meaningful

On grief, ordinary lives, and learning to build a life that actually fits you

I think one of the hardest things about illness is not always the pain or unpredictability itself.
Sometimes, it is the quiet loss of scale. The realization that your life may become smaller, move slower and be more contained than you once imagined.

Whether we personally agree with it or not, we live in a world currently obsessed with ambition and visibility. And the- (to me at least) unfortionate practice that constant movement, whether foreward or backwards, is the only way to go.

Part of this we are taught from childhood, that meaningful lives are (always) big; filled with travel, with sucess, with movement, noise, achievement, and constant expansion.
So- what happens when your own body no longer allows you to expand? When survival itself requires limitation?

According to most of the popular movies I watched growing up, those incapable of living big – and incapable of expansion, would simply roll over and die. That way we the viewers, wouldn’t have to ask questions about sustainability and practicality – for no one in need of those explanaitions were alive anyway.

So for a long time in my teenage years and early adulthood, I though the «expansion» of my disability, was me being punished for not following ‘normal’ life protocol. I travelled instead of studying, then studied instead of settling, and as my disability got worse, I didn’t roll over, give up or give in to being treated poorly.
Don’t get me wrong – I was still grieving, just not what I was preopared for.
I though I was grieving a future that illness had taken from me;
– Careers I had imagined
– Energy I had assumed was obvious
– And the version of myself I thought I was destined to become.

Over time, however, I have started to realize something rather interesting;
that this person never really existed.
Instead, she was an idea; a projection of me, built almost entirely around what society values; like productivity, independence, high achievement and speed.

Because, when the truth is to be told, I do not actually want a life that destroys me in the process of sustaining itself «according to social protocol». And I do not want a career that I cannot control.

Now, don’t get me wrong; parts of said dream were real.
I have always been ambitious, I have always had many ideas and many creative suggestions in life. But – I have also, always been slow in doing things. And done said things, built entirely around an energy that constantly wanders up and down.
And because of this, I do not want a life so large that I cannot rest inside it. Or so large that I cannot be there for my family or my friends.

From a disabled person’s perspective, I think this is something we are (litterally) forced to understand earlier than most people.
We learn, often painfully so, that life has to be meaningful without being massive.
That joy can exist in very small spaces.
Through the work of quiet apartments, or stable routines. Through books stacked beside your bed, or a warm morning coffe/ tea. Through writing a blog – (Hello! xD) and doing so at your own pace, or even just creating something meaningful from your own home.

Many people dismiss these things as «small» – and therefore pointless or unessecary. But every decade, a bunch of books, education and health-related research point to these small things as the foundation of everything else positive in your life.
And when I look at the people I know, who’s lives are the fullest,and happiest – they’re most often built on these tiny, practical daily elements.

The exhausting expectation of being extraordinary

Despite this, many societies rarely allows disabled people to simply exist normally.
Instead, we are expected to be inspirational. Expected to be resilient – and, more than anything, expected to be both positive and productive, on line with everyone else.
Not to mention, endlessly grateful – for being allowed to be alive!

Now, I am not claiming that disabled people can’t be these things! Some are, some aren’t – we are as different as everyone else in the world after all.
But it seems as if ordinary ‘disabled existence’ is not enough on its own. As if we must constantly prove that our lives still hold value.

However, the more I think about it, the more I begin to think there is something deeply cruel in these expectations.
Because, it teaches disabled people, regardless of who they are – that in order to step out of ‘unjust lines’ (which is nessesary for human evolution), we must first earn it. That acting slowly must be justified. That our lives are only respectable of they overcome themselves.

And perhaps that is why so many of us struggle to accept quieter lives – not because they are bad, but because we have been taught to see them as less worthy.

Photo by <a href="https://unsplash.com/@mischievous_penguins?utm_source=unsplash&utm_medium=referral&utm_content=creditCopyText">Casey Horner</a> on <a href="https://unsplash.com/photos/low-angle-photography-of-trees-at-daytime-4rDCa5hBlCs?utm_source=unsplash&utm_medium=referral&utm_content=creditCopyText">Unsplash</a>
Image by: Casey Horner @Unsplash

Why our spaces matter so much

I also think this is why many disabled people become deeply attached to their environments. To our routines, carefully organized spaces, comforting objects – lightening, textures, books and decoration (or lack thereof!). To some this is simply practical: a wheelchair needs easy space to get around, a blind person needs to know where to find things, a light sensitive person needs less bright lights, and a person with easily broken joints need softer spaces in their environments.

From the outside I bet my own space can seem excessively organized, or unessesarily decorated; but to me, a calm and quiet space is very important in order to rest. When your body is unpredictable, your closest environment becomes a form of stability. It becomes something you can shape and change at your own will – when everything else seems out of your control.

There is a reason I bought certain decorations, technology and familiar items with me to medical rehabilitation: the way some people bring coffee machines, blankets, candles or favourite mugs.
They are things than can ground you to a new environment, with the use of an old routine. They remind us that we are people – not just patients. That our lives belong to us.

And maybe that is part of what I am slowly learning now; that a meaningful life does not have to look impressive from the outside.
It does not need to be fast, or loud, or endlessly productive.

It just have to be livable.

A life where your body can breathe, your nervous system is not constantlty at war with your surroundings, and where ambition exists alongside rest, instead of replacing it entirely.

And when one thinks about it, perhaps that kind of life is not small at all.

____________________________________

A task for you, reader!

Tonight, look around the space you live in and ask yourself
«What part og this space makes me feel the most grounded; the most like myself?»

Maybe it’s something as small as a chair, a blanket, a shelf of books, a routine you follow, or even a calm corner…

Whatever it is, allow yourself to appreciate it as a beautiful part of the life you’re building.
Because, whether quiet or loud, big or small; all lives deserves beauty!

– Silje



You Can’t Build a Life You Don’t Have the Energy to Live!

Why rest is not a reward – but a requirement!

Despite my happiness of being back home and somewhat «in route» again, as they say; the past few weeks have reminded me of something I’ve long kept trying to forget:
That it’s my body and my mind that decides my days.
It’s not my plans, nor my ambitions.
And certainly not how much I actually want to do.
No, my body is the decider. And this past week it has been very loud about it.

First of all, my seizures have come back again. They’re not exactly the same as before, but big enough to take over my being; with moments where I say and do things I don’t fully control, that I don’t remember, and that my eyes can’t see.
Then it has taken everything from 5 – 30 minutes afterwards for me to properly ‘come back’ to myself, and understand what has happened.

And again, after all of this, there is a kind of tiredness, very difficult to explain to those who’ve never had a seizure before; but in short – it’s like feeling like you’ve just run a marathon, only the marathon is in your head, and may just have lasted a few minutes.

But here is the thing: most epileptic seizures are short. (In fact longer seizures can be dangerous!) But a minute of seizure can be enough to need several hours of relaxing time. This is not only in terms of physical restitution, but also mental as well – and something that can make even the smallest act feel like too much.


When the plan changes – again

During the time I’ve spent since coming home, I’ve had to ditch at least a dosen plans. Small ones, maybe – but no less important.
– I was hoping to be able to take the buss again by myself.
– I was hoping to slowly return to a daily rhytm that at least felt a little more independent than my current life.
And now, due to my body and minds’s distrust in my own wishes, this may not be possible – at least not yet.

For me, this shift is both practical and emotional. Because, every time my body redraws the limits, I – yet again, have to adjust my life around them, let go of something I just recently started to believe in, and choose an even slower pace instead.

You can’t build on exhaustion

Regardless of what you’re trying to build in life, I think there is a quiet pressure in the world to keep building. Even when you’re tired. To keep improving, even when you’re completely burned out, and to keep moving forward – no matter what happens.

But the truth that we will all be forced to face is this;
You cannot build a life on top of exhaustion.

I mean, try it all you want, but your life won’t be sustainable – and thus you won’t be able to actually live in it.
Because, days built on pushing through, ignoring signals and borrowing energy you don’t have, is the key to a loose, rocky foundation. It might look fine from the outside, but the inside has already started collapsing.

Rest is not something you earn

I think this is where many of us get it wrong. We treat rest like a reward for something.
Something you get after you’ve done enough ( I know I have!)
Or after you’ve proven yourself to the square-faced beaurocracies.
After everything else is finished.

The problem with this, is that for bodies like mine, and for many others’ – rest and restitution is not optional. Instead, it is the thing that makes anything else possible.
Withouth rest, there would be less stability, less clarity and no real progress.




Learning to live smaller – and more honestly

So for now, my days will be slower. This means days that are considerably shorter, with much more sleep and rest-time. At certain moments of the day they might be quieter, and more limited than what I would personally prefer. But whether I prefer it or not;
– A good morning routine
– A calm evening routine,
– Massive amounts of sleep
– And only 1-2 smaller things in between, are the main foundation of what my current body needs in order to actually sustain itself.

And while I know this is in my best interest, it is still difficult for my ambitious mind to accept. Particularly, as we are taught to measure our lives by how much we do.

So, for me – this might have to change.
Instead of looking at producticity as a measure for success, I might have to look for other signs. Like Stability. / Like the ability to rest when in need. / Like the skill to listen to your own body, and act on it, before things get even worse.

And sure, what this actually means for me is:
– Physiotheraphy with strength-training every week, to minimize my risk of osteoporosis
– Only taking the buss under the care of someone else
– Accepting admittance to the hospital sometime again this year,
– And changing current medication even further
It means changing my timelines yet again.

And while I don’t like that, I also know that ignoring these things won’t make them go away. Much like just pushing through won’t make me any stronger – it will only make me more exhausted, as the rest of the world expects more and more, based on what I already have already accomplished.



A different kind of building

So currently, I am trying something else;
to build a life that i actually have the energy to live.
Even if it looks smaller, slower and less impressive from the outside. Because, If you think about it; a life that fits your own energy – is worth more than one who constantly drains it dry.
And maybe that is the real work:

Not building the biggest life possible, but building one that holds.
__________________________________

A small task for you, reader…

Tonight, ask yourself:
«Am I building a life I can actually sustain – or one I am constantly trying to survive?»
Remember, you don’t have to fix it all at once.
Just notice the answer.
And then, choose one thing tomorrow that could make your life a little more livable – not just more productive.

– Silje

Independence is a Myth

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

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

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

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

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

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

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

The easiest person, not the best one

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

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

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


Healing is not the goal – stability is

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

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

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

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

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

Your home is not a failure – it is a response

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

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

Gratitude, and the quiet weight it carries

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

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

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

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

Slow is not the problem – the system expecting speed is

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

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

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

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

The truth we already know

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

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

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

_____________________________________________________________

A small task

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

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

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

– Silje

The Hardest Part Was Coming Home

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

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

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

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

When real life begins again

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

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

Spring cleaning with a body that has limits

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

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

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

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

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

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

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

You can be grateful and still overwhelmed

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

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

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

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

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

When helping starts to cost too much

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

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

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

What I am trying to learn now

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

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

A small pause

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

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

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

A small task for you, reader…

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

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

– Silje

Happy Easter!

I am home again!
– at least for now.

Like many returns after treatment, it tends to be a bit messy!
And while I love being back, there is a quiet tension all around me; the urge to clean and organize everything, and just reset my surroundings completely – and the awareness that I need to slow down.

So this spring, as winter here in Norway is heavily drawing its final breath, my main focus is to find the balance between movement and stillness. Between doing everything all at once – and doing nothing, allowing myself to to just sit down and relax.
This is massive to me – as there is nothing more satisfactory than a freshly cleaned space, yet at the same time – my brain has a deep need for a calmer daily rhytm; one that my body can actually sustain.

Easter in Norway, has always held a particular social importance; regardless of religiosity. Yes, it is technically a religious holiday – but culturally, it is almost like a collective breath of fresh air.
In a single week its as if the darkness of winter dissapears, as (many) families gather at their cabins, read (or watch!) crime novels, eating oranges and chocolate, while the snow quietly melts outside, into a promise of spring.

And it truly is a promise!
Much like the older celebrations of the spring equinox, still celebrated here in the north we slowly see the sun return, day by day – as life ‘begins again’.

Perhaps this is why Easter feels so different this year.
Because, coming home now does not feel like returning to what was. Instead, it feels like stepping intoo something else completely, something new – that I can’t quite put my finger on, or even fully understand.

But it is a feeling of having a different pace of life. A new awareness of who I am becoming, and what needs to change for me to accomplish this.

And maybe that is what this Easter holds for me – not just a time for tradition, rest and reflection, but also a threshold into something new.
No doubt, it feels a little scary – but I am also very exited to see what life brings!

Happy Easter!
– Silje

The Distance Between Us: Remote Work and the Disabled Reality

Back to 2020 – The Year Everything Shifted
When the world shut down in 2020, many able-bodied people experienced working from home for the first time.
During this time, they discovered what disabled people had been saying for decades:

  • working from home reduces energy use
  • commuting should not be a moral work requirement
  • the choice of flexibility creates healthier days, and happier people
  • the concept of productivity is not tied to litteral office-work

Since then, the years that followed has left even more people permanently changed. Long Covid rose globally, and chronic illnesses increased. It was as if – over night, millions of people were suddenly living in bodies they couldn’t recognise; bodies that behaved vastly different than they did before.

So, when the world suddenly decided it was «time to get back to the office»
many newly disabled people were unable to do so.
Suddenly, remote work was not just a convenient option. For many it became a lifeline. And for a moment, for many of us who were already disabled pre-covid, it looked like the future work-marked would finally include us.

But then comes the real question – the one I’ve been asking myself more and more lately; was remote work ever built with disabled people in mind?
Or was it just built for the able-bodied people who temporarily needed it?

The Promise of Remote Work
Remote work holds enormous potential for disabled people:

  • fewer sensory triggers
  • more control over energy and environment
  • the ability to rest, stretch and manage a variety of sympoms
  • no inaccesible public transit
  • flexibility around medical appointments
  • lower social pressure

    For many of us, remote work felt like the beginning of a revolution. A moment when the world caught up to the reality disabled people had lived in all along.
    But as we all should know by now, potential is not the same as design,
    – and accessibility is not the same as inclusion.
    While remote work it has the potential to be extremelty liberating – it is often designed and illustrated as the digital version of jobs, with the same structural barriers as before.

    Thus, many disabled people report; stricter scedules, despite the word «flexible» being featured in job descriptions. Others experience «zoom-fatigue», especially for those of us with neurological or sensory disabilities. Furthermore, while it varies between countries – some employers have expected constant availability, and several organizations lacks clear accomodation policies.
    Many disabled workers with cognitive or physical needs – have also experienced the lack of adaptable digital tools – which makes remote work difficult, if said tools are nessesarry to be able to work in the first place.
    Others have also experienced a pressure to keep their cameras on, despite it being unessesarry for the work they do.
    And lastly, many employees experienced a form of isolation without proper support – infrastructure, which can take a toll on anyone .

Truth be told, remote work only seems inclusive, when the people designing it assumes everyone doing it is able-bodied.
And so the hopeful dream quickly becomes another exhausting reality check.

My Own Experience: A Disabled Worker in a Digital World
As a disabled individual, I can during good weeks work up to 40% – if I’m careful.
I have creative skills, practical experience and education
– as well as a genuine desire to contribute something meaningful.
Remote work should, tecnically speaking be the perfect sollution for someone like me; someone who are perfectly able to work by themselves – but also unable/ unnalowed to take rushtime public-transit or drive a car.

Yet, in the past few years, none of these things have helped me, because I don’t know the right people, and I don’t have the energy to go out and fakely befriend them either. Thus, I’ve applied for job after job, with no luck.
Instead, I’ve faced descrimination on interviews, emails, and sometimes even face-to-face. Is this illegal? – yes. Is this common – even more yes.

And I am far from being alone in this!

Photo by <a href="https://unsplash.com/@ritualvisuals?utm_source=unsplash&utm_medium=referral&utm_content=creditCopyText">Ritual Visuals</a> on <a href="https://unsplash.com/photos/macbook-pro-beside-black-click-pen-and-white-ceramic-mug-on-brown-wooden-table-q1UY8xFyTmM?utm_source=unsplash&utm_medium=referral&utm_content=creditCopyText">Unsplash</a>

Image by: Ritual-visuals @Unsplash

Employers seem to love the idea of remote work – until the employee is disabled. Then suddenly, it’s a problem.
It’s almost like remote work is framed as a benefit for busy, high-performing professionals who dreams of flexibility.

But in reality, the concept of remote work has been a basic accomodation practice disableed people have needed for decades.
So, I decided to shift my energy elsewhere. I write. I create. I’ve made my own practice of ‘remote-work’ that is built around my own needs, and my own scedule.
Thus, I’m able to productively use my energy during the hours I have
– and it has made me much happier for it!

Where did remote work go wrong?

«Remote work should not be a privilige.
For disabled people, it’s accessibility – and accessibility is a human right».
– Alice Wong, disability activist & founder of Disability Visibility


The current work model fails disabled people in many ways:

  1. it assumes productivity looks the same for everyone…
    Some of us work best in 2-hour bursts.
    Some need mid-day rest
    Some need to handle medical routine in between tasks.
    ¨¨¨~Productivity should be measured by output, not through hours glued to a screen.
  2. It wasn’t built with energy limitations in mind.
    Fatigue is not the same as laziness.
    Executive dysfunction is not disinterest.
    ~Disability is not something you «manage around»- it’s a reality shaped by body, biology and boundaries.
  3. It excludes disabled voices by design.
    Companies build remote work systems without consulting the people who need – and rely on them the most.
    ~Thus, the systems becomes an echo of the office – not an improvement of it.

What remote work could become – if we chose to listen

While I’ve painted quite a muddy picture, I still believe that remote work could become revolutionary. But for that to happen, businesses – and the world at large needs to be willing to listen, and to do the nessessary work, for all people.

In my mind this is a future where:

  • meeting default to asynchronous communication
  • scedules adapt to body rhytms
  • employers understand energy budgeting
  • disabled workers help design digital tools
  • output matters more than presence
  • camera – off culture is normalized
  • accessibility is built – in, not added later.

Final Reflection: A task for my readers
This week, I want you to explore your own relationship to «work».
Ask yourself:

  • What does productivity actually mean for my body?
  • what daily rhytms supports my health, my body, and my mind?
  • if remote work felt freeing – how so?
  • What would a truly inclusive workday/ week look like for me?

Write down your answers, let yourself dream a little.
Because the current systems may not be built for all of us,
but that does not mean that we cannot imagine.
After all, if we imagine enough, we might be able to create new systems ourself, and ask for something better.

– Silje

When «Taboo» Becomes Toxic; The Fetishization of Disabled Bodies Online

Ableism is not just about hatred – sometimes it’s about desire.»
– Andrew Gurza, disability activist

The Hidden Danger Behind «Desire»
Lately, there’s been growing discussions about a deeply uncomfortable trend: the fetishization of disabled people – especially young disabled people. Whether it be on social media, dating apps, and even in online communities.
Don’t get me wrong, disabled people have desires, wants and the potential for sexual attraction as much as anyone else – but what we are talking about here is not just about missplaced attraction. It’s about objectifying disability, and reducing a person’s identity and humanity to a single factor: their body, difference – their «otherness» alone.

«To be seen only for what makes you different… is to not be seen at all.»
– Silje Elsrud Yttervik

Le Monde recently published a piece, where several young disabled people shared how they recieved hypersexualized messages that focused explicitly on their disability. This could be all from prostetics, scars, to moving with crutches or in a wheelchair (LeMonde.fr).

These experiences, unfortionately aren’t rare – they’re part of a sinister pattern rooted in ableism, where disability is not fully acknowledged as part of a person, but fetishized as a spectacle or as a kink.

Why it’s So Harmful
Fetishization does more than ignore people’s boundaries. it often:

  • Reduces a person to their physical or visible «difference» rather than seeing them as a complex, full human.
  • Risks emotional and sexual exploitation, because their fetishizer may prioritize their own fantasy over the disabled person’s agency or comfort.
  • Reinforces a broader culture of dehumanization – where disability isn’t just misunderstood, but also eroticized in a way that strips away a person’s dignity.

    Furthermore, research also backs this up. A study on disability pornography (PubMed) points out how certain forms of sexual content celebrate «vulnerability» and impaired agency in women with disabilities – often linking it to power and dominance. And this is not about intimacy – it’s about control disguised as desire.

Back in Time:
When Disabled Bodies Were Spectacle Before They Were People
To truly understand why fetishization cuts so deeply for many disabled people today, we have to look backwards – to a time when disabled bodies were not just stared at, but also sold as curiosities, entertainment or ‘marvels‘.

Throughout the 18th and the 19th centuries, what we now call a part of the disabled community was often introduced to the wider world through circus-sideshows, ‘freakshows’, travelling exhibitions, and wider cabinets of ‘curiositites’. And they were introduced as ‘marvels’, ‘oddities’, ‘wonders’ and ‘specimens’, just barely considered as people!

Many were born with congenial conditions, chronic illnesses, or unusual physical traits and differences – that medical science simply didn’t yet understand.
Some became famous in ways they never fully controlled: like ‘hairy women‘ with hypertrichosis, conjoined twins, people unusually large or small in stature, those with growth disorders, or skeletal/ visible deformities…
Thus, instead of recieving care or respect, they became objects of horror and fascination.
And this fascination includes fetishization.

Many had their bodies marketed as exotic, erotic, or monstrous – often all at once. Posters drew- and described them in sensual or titillating language, framing their differences as something to-be-staired-at, consumed or desired in a way that simply erased their personhood.

Because, what was fetishized was never their humanity – only their difference.
And this history is not as distant as we’d like to believe!
For centuries, disabled people were only allowed visibility in two forms; through pity or through fetish.
Neither left room for dignity, autonomy, or complexity.

So when disabled people today speak about the pain of fetishization, it is not only about the present moment. It is about the heavy, inherited memory of being displayed rather than understood. Of being commodified rather than cared for. And of being reduced to a spectacle – first in a tent – now, too often on TikTok and the likes.
It’s almost like the world has changed, yet the structures around us have not.

TheNorwegian/ Youth Perspective
In Norway, this issue intersects with serious gaps in conversation about sexuality, youth and disability. According to Unge Funksjonshemmede – a national organization for young people with disabilities, there is a notable presence of «sexualiserte hatytringer» (sexualized hatespeech) on social media (Regjeringen.no).
Their reports highlights how disabled youth experience negative attention that is explicitly tied to their disability: through objectification, pressure and even harassment.
In their campaign Sex som Funker, they further explore how difficult it is to address sexual desire, consent and safety when people treat disabled bodies as inherently different, or as a source of fantasy (Unge Funksjonshemmede).

My Own Reflection: Why This Hit’s Close to Home
I’ve personally thought alot about how visibility works, both in general – and while working on my MA thesis: Modern Marvels: The Heritage of Exhibited Disability.
And, for most of us (disabled or not) – visibility is about being seen and wanted, but not about being sexualized.
Because, when people fetishize disability, they don’t necessary see the person in question; they see a fragment of them – like a fantasy living rent free in their brain.

And it hurts too, to realize how many conversations around disability and attraction that is still rooted in power – not mutual desire, but domination or infantlization. And that makes me pause: for how can we talk about sex safely, when the opposite of invisibility can feel so dangerous?

Reclaiming Our Sexuality
But there is hope. And there is power within us.
Many disabled activists, have long fought to reclaim both narrative, desire and agency. People like Andrew Gurza, who started the hashtag #DisabledPeopleAreHot – not as a fetish, but as a declaration: Yes, our bodies are valid, whole and worthy of desire. Organizations like Sins Invalid push even further: by celebrating erotic, empowered, and disabled bodies – challenging ideas of beauty and sexuality in itself.

We can demand more visibility, and we can demand more respect.
Through consent, and humanizing desire.

—

A Task For Reflection
This week, I invite you to reflect (and maybe share):

  1. Have you ever recieved unwanted sexual attention because of your disability? (Or been objectified in any way)?
    – or have you maybe ever fetishized someone else’s disability?
  2. How did it make you feel – seen? used? unsafe? powerful? mixed?
  3. If you could speak to the people who fetishize disability, what would you want them to understand about you – not just your body/ mind, but you?



    – Silje