(Dis)Abled Creations

Paused, Not Broken

«On re-entering the hospital, and the kind of progress no one sees»

For myself, and for many people I know – there’s a particular kind of silence that arrives when you realize you’re going back to the hospital.
It’s not particularly ‘good’ or particularly ‘bad’ – it’s just there; like a quiet recalibration.

In able-bodied culture, hospital admissions are most often framed as setbacks. Or as proof that something went wrong; evidence that you failed to manage your life correctly. For those of us with physical/ chronic disabilities, however – this is not the case.
Sure, it might be that way for some of us, people are different after all – but I’d go as far as to say that for the vast majority of disabled people, hospital admissions is almost like a form of necessary maintenance strategy…
And later this month, this type of maintenence is coming back to me.

Now, I’ve already been admitted to the hospital many times in my life, and probably will be again, several more – but it always makes me feel hopefull yet anxious in the days and weeks ahead. Hopeful, that my doctors might finally find a way to make my epilepsy less apparent in my daily life, and anxious about collapsing my entire life again, without knowing how long. If this sounds too excessive – the last time I was admitted to a hospital, I ended up being there for almost 3 years!

This time I am being admitted to a specialist hospital that I’ve never been to before, and will probably be staying for several weeks, at the least.
Of couse, while this in itself is not the end of anything I’ve already built in my life, it does require a heavy pause from it.
And pauses, in a world seemingly obsessed with gaining momentum, is deeply misunderstood.

Progress is not linear when your body isn’t either
Disabled progress does not look like a straight upward line. Instead it loops, stalls, contracts or expands – moving in spirals rather than ladders.
And because of that; sometimes, the most responsible thing you can do is to step out of daily life and hand parts of your survival back to professionals – as maintenance without them becomes unsustainable.

Hospitals are often framed as places of last resort. And in many ways they are. Not because diabled people wait too long to mainenance, but because support is rarely offered before a crisis. So, while going back to a specialist ward can be proof that I’m still here, going for it – I won’t lie and say I’m not scared. Scared that I’ll get as ‘drugged up’ by wrong meds as I got the last time, scared that I’ll gain a bunch of weight without my usual training group, or scared that I won’t be able to come back to my daily life once finished.

The invisible logistics of being «paused»
While I am very happy I was able to be admittet this early on in the year, I’d be lying if I said it was all good, always. Because it’s not. What people rarely see, is that hospital admmissions don’t begin on admission day itself.
Instead, they often begin weeks earlier, with things to organize, meetings to move, appointments that must be cancelled or postponed.
Fort some people, finances must be adjusted; – and the packing! The packing for all the things you might need and want, all the while fearing that the routines you’ve worked hard to build will just fall flat; and make you build them again.

Being treated is not the same as being absent
One of the hardest things about re-entering the hospital, is how quickly disabled people are erased from public life.
As if we’re dissapearing from timelines , and conversations about the future, just because the systems around you don’t know what to do about people who need ongoing care – while also having ongoing ambitions.
But being absent from public productivity, is (luckily enough!) not the same as being absent from meaning.

So while I might be paused in one sense; as an example, I don’t know whether I’ll have enough time to write in my blog. However, other things will still continue in the background; ideas fermenting, recilience recalibrating, boundaries changing – hopefully turning me intoo something even stronger than before.

What I want ot say before I go
This is not me starting over – I’m just continuing down a different path, tending to the conditions that makes continuation possible.

If you yourself is someone preoparing for an(other) admission, a round of treatment, a pause you didn’t ask for – or anything of the sort, remember – we’ve all done it before, we can do it again!

– Silje

When Resiliance Becomes a Weapon:

(On survival, sanctuary, and the quiet rebellion of disabled joy).

Since I was a small child, one slightly strange thing I have noticed, is how disabled people (in general) are praised for our resilience – far, far more than we are supported in life.

We are told that we are strong.
We are called Inspiring.
Now, neither of these thing are wrong! But I find it odd that we are applauded for enduring systems that were never built for us – and then quietly abandoned by those same systems once the applause fades.

Resilience, in its original sense, is not violent. It is a human capacity to bend without breaking. To adapt, and to survive changes.
So whenever such applause reaches me – my first though has never been to feel proud of myself ( I am Norwegian after all!) – Instead, I see it as an admittance from those healthy and wealthy, that they would (according to their behaviour) never be able to adapt to anything out of the ordinary.

And this is a problem. Because, when resilience is demanded by institutions, and appointed to (not by) certain individuals, it becomes something else entirely; it becomes a tool of deflection. A way for these systems and institutions to say: «We don’t have to change our ways – just look how well you’re coping!». Instead of questioning why some people have to cope at all.

This in itself would not have been such an irritation, if it weren’t for the fact that WHEN disabled people actually ask for accomodations, we are often met by admiration instead of action.
When we ask for rest, we are reminded of how much we have already endured. When we ask for safety, we are told – implicitly or explicitly – that we don’t need it, we’ve after all managed so far.

As if we’re part of some form of ‘endurance theater’.

So, many disabled people retreat inward instead.
Being at home becomes not only a preference, but a necessity. And it’s not because we are antisocial – or afraid of life. Not at all! It’s because public life often remains relentlessly hostile to disabled bodies and minds.

The amount of people I’ve seen online and in public who seems jelaous of me, for being unable to work – while having (litterally) no understanding of what that means in terms of daily energy, amount of needed sleep and actual ability, is insane!
These people are talking about the supposed ability to take monthly vacations, and I’m like –I need up to 17 hours of sleep. What vacation are you talking about?

At home however, those of us with disabilities can sit down and rest withouth giving an explanation.
We can lie down when needed to without justifying it for anyone, and structure our days around our daily energy, our nervous system, our fatigue – or our daily pain.

And yet, I’ve found that even this sanctuary is often framed as a failure, through comments like;

«You should get out more».
«You’ll feel better if you try».
«You can’t hide forever».

What many of these comments miss, is that for many of us, home is where we are finally allowed to exist.

This is where joy enters the conversation – awkwardly, defiantly, and often unwelcome.
Because, while many abled people are unaware of their own behaviour against us, disabled joy is very often treated with suspicion. It’s almost as, if we’re not visibly struggling in life, our needs are questioned. If we are happy, our daily suffering is minimized. If we laugh, rest, create, love or obsess over a show, a book or a small ritual – it is seen as evidence that things «arent that bad!«.

But joy does not cancel our needs.
And resting is not the same as recovering.
For many disabled people, joy is not a reward for surviving – it’s the reason survival is possible at all!

To find pleasure in a hostile world is not naïveté.
It’s a form of resistance.

Now, to get back at the task at hand, all these things combined, what makes the misuse of resilience so painful is not just what it asks of us – but what it allows others to avoid.

If disabled individuals are resilient by default, workplaces don’t have to change.
If we are strong, then policies don’t need to bend to current realities.
If we endure hostility quietly, then no one has to sit with the discomfort of systemic failure.

And so, resilience becomes a conventional narrative – one thing that celebrates individual survival while leaving collective responsibility untouched.

Now, I’m going to state this very bluntly, because euphemism have protected cruelty for far too long. So, excuse my reductio ad absurdum – but, think about it:
If abled-bodied individuals are so jelaous and angry of those of us born with disabilities and thus are paid a tiny amount to afford medications, food and housing cost; there’s only 4 logical ways to end that.
1.) Abortion due to disability should be legal up until late term
2.) (Litteral) killing of born, disabled babies should be legal.
3.) Workplaces should accommodate for all kinds of disease and disabilities, and pay should be enough to survive off.
OR,
4.) If you’re born disabled, you should remain payless and homeless untill you roll over and die (see 1 and 2).

If the first, second and fourth option feels abhorrent – as they should, then only one of them remains. And if that cost feels unfair to the able-bodied, then the truth is simpler than they’d like: endurance has always been a part of the social contract. They’ve just never had to carry it before.

Because, the current narrative is paid and carried in exhaustion, isolation and shortened lives.

I do not think disabled people should need to be more resilient.
Instead, the world at large needs systems that do not require constant resilience just to exist within them.

We need homes that are sanctuaries and societies that are livable. Where there is room for joy that does not invalidate pain.
And we need to stop mistaking survival for success.

Because resilience, when demanded instead of supported, is no longer a virtue.

It’s a warning sign.
That untill everyone is safe – no one is.

– Silje

Quiet Bodies , Loud Hearts

Some gifts arrive wrapped in glitter. Others arrive quietly, and you only realise what they are when your tight chest loosens.
This Christmas, for me – that gift was the show’Heated Rivalry‘; truly a gift that just kept on giving!

Having read the book carefully crafted by Rachel Reid some years ago – like the hopeless romantic I am, I did not expect to like this adaptation. Like every other christmas-time, I just needed something to watch in order to get over how tired I was, the way many disabled bodies get tired towards the end of the year.
However, I can happily say I was completely mistaken in all of my assumptions.

Briefly explained; Heated Rivalry is a TV-show made by the Canadian streeming-service Crave, by writer and director Jacob Tierny, based on the previously mentioned book by Rachel Reid. The story follows the hidden romance between two arch-rivaling Hockey players; Shane Hollander (Hudson Williams) and Ilya Rozanov (Connor Storrie), through a decade- long affair.

When craft exceeds budget
In general, Heated Rivalry should not work as well as it does; it had a modest budget, resisted spectacle in favour of carefully adapting a well-written book, and seemed – despite several highly sexual scenes, both restrained and emotionally intelligent when needed.
And watching these characters that I already loved and could, in ways recognize myself in, practically come alive on screen, felt like recognition mixed with representation.
And in a matter of weeks, the show went completely viral – not just among queer audiences, but among straight women, hockey fans, and people who usually don’t watch romance at all.
This does not happen by accident. And is a clear example of a very good script, mixed with awesome acting, and superb editing style.

In some ways, the virality of Heated Rivalry reminds me of the 3rd season of ‘Skam‘ when it came out, almost 10 years ago. Much in the same way, it had a very modest production – yet had people all over the world going completely nuts!
The clear commonality between the two shows is the fearlessness in them. Yes, shows that feature romances between two boys/ men tend to have many viewers also outside the queer community. But, beyond that – it’s the fearless realism mixed with hopeful fantasy that gets people hooked.

From what I have seen, the only backlash Heated Rivalry have gotten, is its lack of hefty homophobia (thus far). But from where I stand, that is part of the beauty of it. Because, within the concept of «art illustrating life illustating art» – a better reality for queer people has to start somewhere, might as well be through fantasy.

Within the art of Heated rivalry, the camera lingers instead of rushing around. The script allows for all kinds of emotions – and desire and yearning is shown as a form of gravity pulling two people towards each other, long before either of them has the language to describe why.

It is truly, withouth exaggeration, one of the best screen adaptations I have ever watched. Not because it amplifies the book – but because it listens to it.

Bisexuality that doesn’t explain itself
One of the main characters in the story is a russian bisexual man. And crucially, it doesn’t ask him to teach us what that means to him.
Sure, there are bits and pieces along the way that gives viewers a sense of his sexuality; Ilya likes girls, but he also likes Shane. Ilya is not completely gay – etc etc. But what I thought was very nicely done, is how the show does not give the character an urgency to clarify, it just comes across bit by bit.

As a bisexual person myself – and even more so, a bisexual person raised within Northern European/ Eastern European cultures; things stoicism, emotional economy, and the belief that you endure rather than confess, often follows you through life.
As such, this kind of representation matters deeply, because it reflects how painfully private bisexuality often looks, especially in men.

In Reid’s writing, desire is often described as something that has been there all along, waiting, and the show perserves that truth beautifully.
Or to put it differently; the attraction between the characters is instant, but the meaning of it takes years to confess.

Nine of them to be exact…

Neurodivergence, routine and bodies with rules
The other half of the story resonated with me just as strongly, though in a different register. While it does not become canon in the first book (nor does it in the show), but one of the protagonists still reads as neurodivergent.
Not through official diagnosis, but through behaviour;
The need for routine,
the distress at disorder,
and the way control becomes a safety mechanism.

As someone born with epilepsy, I recognized this immediately.
My own body too, has clear rules that I follow, in an attempt to keep my brain happy and healthy.
My days are shaped by thresholds I don’t get to negotiate with, whether I would want to or not.
I know very well that my energy is finite, and that overstimulation has clear, at times dangerous consequences.
And let’s be real – chaos is not romantic if it costs you days of recovery.

What Heated Rivalry does very well is that it doesn’t frame this as a weakness within the character, it’s a structure. Shane is still one of the best hockey-players in the world, and his structural mechanisms is his way of surviving high-pressure environments, while his nervous system runs differently than his teammates.

That kind of portrayal is rare to find. And for disabled viewers it lands quietly, but sets deep positive trails.

Desire that grows instead of explodes
Heated Rivalry s is not a story about forbidden love in a dramatic sense. It’s a story about inevitability;
Two people meet too early,
they keep choosing the wrong moment,
building a habit around secrecy – that eventually becomes unbearable.

In the book, Reid often returns to the idea that what Ilya and Shane have is «only supposed to be physical» – until it very clearly isn’t, and their love for eachother is practically slapping them in the face. And the shows does a wonderful job of keeping this tension intact.
What begins as lust becomes attachment to eachother, then something heavier that finally demands a reckoning.

And in a way, I find that there is something profoundly hopeful in this for disabled and queer people alike:
That being a little slow at it, does not mean an absence from it (read that whichever way you want).
That some truths need a little time to become safe enough to surface.

Why this mattered to me, now
For me, I think this show came at exactly the right time.
Not because my life is easy – but because I’ve learned to recognize (and appreciate) joyful , potentially tranformative things when they appear.

Heated Rivalry reminded me that representation and love doesn’t have to scream and shout to be real. That bodies and minds with constraints still get to want -and be wanted, to choose and belong.

And I am incredibly grateful for it!

– Silje

(Merry Christmas) – A Small Note on Rest

This festive season asks for light, noise, movement and joyful celebration.
My own body, however, hopes for rest and quiet moments with family and friends.
Disabled self-care is not indulgence – rather it is listening when the body screams that you’ve had enough.
Restfull nights are not giving up on celebrations – but rather, they make you choose when and what to participate in, and what to let go of.
Being stressed, and exhausted – from party to party full of people is not a must to celebrate the christmas season.
If all you do this week is breath, drink water and let your nervous system settle down, that is all – OK.

Join what you wish, and skip the rest.
Merry Christmas!
<3

– Silje

Born Uninsurable: How Child Insurance Build’s a Two-Tier Society

For a good while now, insurance companies have told us they price ‘risk‘.
In practice, what they actually, is to price people out of protection. And they do this, from the very moment we are born.

Thus, a childhood marked ‘high risk’ becomes a lifetime marked poorer, harder and narrower.
But make no mistake; this is not acturial science – it’s intentional social engineering.

The Problem; Plain and Furious
To use my own story as an example;
when my sister was born, my parents could buy insurance for her.
They could however, not buy it for me; I was ‘too high risk’.
My parents were simply told that I was slightly too fat at my current stage of growth, (I was 8) and struggled with some genetic-issues related to my family.
So, even as my family had the fund to insure me, the company blankly refused.

Many years later, one of my friends who share a similar epileptic-story to myself, ended up recieving nearly 1 million NOK after becoming partially disabled; money he recieved due to his childhood insurance, and which has severely helped him move forward in harsher times.
Since I didn’t get approved for insurance, I’ve recieved nothing.
Now, don’t get me wrong, I am exceedingly happy for my friend, that’s not the point I want to make.
Instead, what makes me furious is knowing that the system is made this way,
by design. And this design is what makes our outcomes so different.
That in itself is not just unfair, it’s also discriminatory.
And it seems to happen quite often in places that like to call themselves ‘fair’.

How Child Insurance Actually Works (and Why It Hurts)
When Insurance underwriters gets an application for child-insurances, they assess the risk each child may potentially bring to the company further down the line, and then either:

Accept the application with standard coverage (children who are healthy and unlikely to need insurance).
accept the application with reservations/ exclusions, (children with the likelyhood of X and Y happening due to certain issues, will recieve coverage for anything except that which is likely to happen).

or they,
reject the application entirely (the otherwise healthy child has physical/mental/genetic something that may cause issues in adulthood,. Thus insurance companies manages to sleek away from those who need their help the most. Hooray!

In Norway, a small but notable share of child-insurance applications recieve reservations; a smaller share are simply refused. Policy managers admit that common triggers for reservations include things like: allergies, asthma and eczema – and that about 1% of applications are refused outright.
And this is not a theoretical loophole, but rather a documented practice;

3 May 2018.
– Ifølge fagsjefen Espen Paulsen i Storebrand Forsikring er det 5% av barn det søkes forsikring for som får reservasjon og rundt 1% som får avslag.
(https://www.klikk.no/foreldre/barn/barnehelse/unntak-i-barneforsikring-3757069?)

What this means, in real terms is: some children are allowed the social safety net of insurance, while others – often those with congenial differences, early developmental signs, or genetic markers, aka those who need it the most, are not.
Newspapers have repeatedly told stories of children denied coverage, despite being otherwise healthy, and of parents left to fight insurers and their sleezy system.
As mentioned in Aftenposten on the 12 of May 2020;

«Barneforsikringer er for friske barn, de som trenger forsikringen minst av alle».
(https://www.aftenposten.no/foreldreliv/i/b58Er3/norsk-barnelegeforening-reagerer-paa-markedsfoering-av-barneforsikringer-spiller-paa-usikkerhet-og-frykt-hos-foreldre-i-en-saarbar-startfase?)

Furthermore, from a public health and ethics standpoint, the practice is not only bluntly uncomfortable – but studies in public health argue that underwriting by health risk raises serious ethical concerns in welfare societies meant to share risk fairly.

Because, when private insurance draws sharp lines at the very start of life, the result it predictable: inequality becomes embedded – not corrected, as illustated by M. Ospelt at Springer Nature (2024) in a systemic review exploring insurance, legal-and financial hardships connected to childhood- and adolescent cancer. (https://link.springer.com/article/10.1007/s11764-024-01710-3?)

Real Cases = Real Consequences
Several journalistic investigations and reports on the matter, show a multitude of heartbreaking examples: healthy children refused cover because of recorded learning difficulty (you know, things that often settles with age); children denied because of gender identity (one of the highest reasons for child-suicide); families who’ve had to take legal steps to challenge denials.
And these cases are not anomalities, they are signals of a rotten system;

«Frisk 12-åring ble nektet forsikring.
En 12 år gammel jente fikk avslag i Sparebank 1 da foreldrene ville kjøpe barneforsikring. Begrunnelsen var at barnet hadde lærevansker».
(https://www.aftenposten.no/norge/i/Xq867/frisk-12-aaring-ble-nektet-forsikring?).

Furthermore, Norwegian ‘ombudsman’ rulings also reflect this tension, as certain decisions have found that automatic denial to children with diagnosed conditions – such as Asperger’s syndrome, places them in an even worse position, despite the legal line being both complicated and inconsistent.

For families the result is simply uncertanty, expense and often no remedy.
(https://ldo.no/arkiv/klagesaker/2016-funksjonsevne-1412-avslag-pa-uforeforsikring-ikke-diskriminerende/?).

Why This Deepens the Disability -> Poverty Trap
Take a few seconds, and think through the math of a life: a child who recieves insurance can, when disability or severe illness hits, access compensation for care, adaption and lost family income. On the other hand, a child denied coverage faces one of two futures: full dependence on public benefits (which are often stingy, beaurocratic andhighly stigmatized!) – or end up in catastrophic amounts of debt.
Either way the child who was «uninsurable» at 8, becomes an adult at a structural disadvantage.

That difference – paid out in NOK, paperwork and lost opportunities – ripples across education, work capacity, mental health, and even mortality. It’s created a quiet class divide where genetics, medical history, and early development determines economic safety during adulthood!

The Ugly Logic: «It’s Just Business!»
The insurance industry will say something like «we price risk; we must remain solvent.» While this is tecnically true, policy design is not morally neutral. A society that allows private underwriters to remove children from shared protection, is one that outsources care of its most vulnerable to market whims – and then wonders why inequality deepens.

And in countries like Norway, where (I’d say most) cases of childhood overweightness, or developmental differences are genetically or medically driven-(not socioeconomic), blanket underwriting rules that penalize «risk» are especially cruel, and often irrelevant to the true cause.
Parents who’ve then tried to insure healthy children, have had to fight denials and public battles – demonstrating that it isn’t just «acturial math», but intentional social exclusion:

Barna ingen vil forsikre. [….].
Barn som allerede er syke, eller som har en åpenbar risiko for å utvikle en kjent sykdom, vil få avslag.
(https://www.vg.no/dinepenger/sparing-og-investering/i/aPgoB5/barneforsikring-barna-ingen-vil-forsikre).

A Practical Illustration
As mentioned earlier in the post, around 5% of child-insurance applications may recieve reservations; and roughly 1% gets completely rejected. Despite being a small fraction, this still represents thousands of families each year, who must either accept part of the family’s exclusions from societal protection, or go withouth coverage. The emotional, economic and practical burden here is massive.

Some families have publicly reported refusals that appear to be based on identity or non-medical labels (e.g., gender identity) or on administrative categorizations, rather than a clear medical rationale
– a trend that has provoked public criticism and legal complaints:

Barn fikk avslag på forsikring […]. Begrunnelse: Barnet er kjønnsinkongruent.
(https://www.vg.no/nyheter/i/eJvjQM/barn-fikk-avslag-paa-forsikring-begrunnelse-kjoennsidentitet).

What Could Be Done (and What We Should Demand)

1. Regulate exclusions more strictly: Policymakers must reduce the leevay insurers have to reject or exclude children for congenial or developmental makers.

2. Transparancy in underwriting: Insurers shouls be required to provide clear, public explanations for denials and the exact evidence used.

3. Public alternatives or reinsurance: If private markets refuse, the state should step in with affordable non-discriminatory coverage options (to reinsure child policies so that risk is shared).

4. Ban genetic/ identity-based exclusion: Much like other countries do for certain insurance types, we should prevent decisions solely based on genetic markers or identity categories (Note: US GINA law forbids genetic discrimination in health/ employment contexts – Norway currently lacks a similar broad shield for private insurance).
(https://www.facingourrisk.org/blog/protections-against-genetic-discrimination-vs-pre-existing-conditions).

Devestating Two-Tier Society
If we allow insurers to create «insurable children» and «uninsurable children» we are choosing – like I’ve mentioned before, a class system by proxy. We are deciding, in spreadsheets and refusal letters, whose families will be forced intoo poverty when sickness or disability comes, and who will survive with their head held high, due to family-wealth/ parental contacts.

And that is not insurance companies protecting ‘risk‘ – its protecting privilige!

So, if you are a parent reading this: demand answers!
If you are a policymaker: first off, opt for better morals! Make the market serve society -not the other way around.
And lastly, if you are an insurer: rethink whether your profit model should include excluding children from basic economic dignity.

The last thing I wish to add is this,
despite my lack of insurance, I still count myself as one of the luckey ones! I have a family that supports me – that I support back, I have a place to live, food to eat, a place to train under supervision, and a wakable path to my doctor(s).
I am not writing this to nag about my own situation – I am writing this for those way worse off than me. They exist – en mass!
And when you in such a situation has to accept that some people will get a payout, while others in a similar situation wont, that will never feel fair.
And until we stop letting insurance companies define who is worthy of protection, nothing about that will change.

– Silje

Når Kompetanse Ikke Er Nok: Et Brev Til Norske Arbeidsgivere

(English version further down!)

Hvis du er en norsk arbeidsgiver, er denne til deg. Tenk ikke på det som en anklage, men heler som et speil. Et speil, som viser elementer flere av dere i åresvis har prøvd å børste under teppet.
Fordi, for hvert eneste år blir den egentlige sannheten i dette landet, tydelig for flere og flere arbeidstakere. Sannheten du som en arbeidsgiver har prøver å mykne opp med ord som «kjemi», «tillit» eller «sosial tilpasning».

Hvis du er en ansatt i det norske arbeidsmarketet, som har følt deg utenfor – spesielt hvis du på noen som helst måte er funksjonshemmet, neurodivergent eller ‘bare’ født utenfor det «riktige» nettverket – er denne også til deg.

—

La Oss Begynne Med Det Ingen Tør å Si Høyt
Av en eller annen grunn, later vi som om Norges ansettelses-problemer handler om mangel på ferdigheter, mangel på motivasjon, mangel på disiplin eller til og med personlighetsproblemer!
Vi later som om funksjonshemmede- eller andre ‘uegnede‘ søkere blir avvist fordi de «ikke kan holde tritt», mangler de nødvendige ferdighetene
– og at unge mennesker rett og slett faller utenfor arbeidssystemet fordi de ikke prøver «hardt nok».

Men sannheten, den egentlige sannheten – er både større og eldre enn noe av dette.
Sannheten er at Norge drives av nepotisme.
– ikke meritter
– ikke rettferdighet (til tross for at vi prøver å mobbe alle til å tenke sånn)
– og definitivt ikke likestilling!

Nei, nepotisme!
Og ja, vi kan kalle det, det det er; en form for korrupsjon kledd i en ullcardigan.

Hvorfor Nepotisme Virker Så Harmløst For Arbeidsgivere
Arbeidsgivere rettferdiggjør ofte nepotistiske ansettelser på måter som virker rimelige;
– det er lettere å ansette noen jeg allerede stoler på, som jeg vet vil gjøre sitt beste
– Vi kan ikke risikere å gjøre feil ansettelse, da det er altfor vanskelig å si opp folk i Norge
– Vi trenger stabilitet, ikke usikkerhet.

Og ja, på overflaten kan denne type mentalitet virke harmløs og veldig komfortabel:
I stedet for å ansette en usikker person med riktig kvalifikasjon/erfaring, ansetter man heller sønnen til kollegaen sin, eller søsterens venninne. Noen man gikk på skole med, eller en som trener samtidig som deg.

Kostnaden For Komfort: Et Stille Klassesystem
Men det som aldri nevnes, er den enorme kostnaden denne typen «komfort» fører til.
Fordi, den langsiktige kostnaden, er at Norge skaper seg et klassesystem. Dette i seg selv er problematisk, da de grunnleggende elementene i et moderne klassesamfunn er stikk motsatt av de verdiene norsk kultur hevder å pålegge sine borgere – hvor hele «regler for deg, ikke for meg» passer ikke inn.

Fra en veldig ung alder læres norske barn at vi alle er like for loven.
Men arbeidsstyrken vår forteller en helt annen historie.
Når «hvem du kjenner» blir viktigere enn «hva du vet»/«hva du kan gjøre»
– skaper du ikke bare eksklusivitet, du skaper et urettferdighet og uliket.

Når et lands lover gjentatte ganger brytes av et stort antall arbeidsgiverne – og denne ulovligheten rammer de mest sårbare borgerne hardest;
samtidig som norsk kultur hevder å være både rettferdig og lik for alle mennesker,
da syntes jeg nordmenn bør akseptere at de gamle norske verdiene er døde.

I stedet er «Det nye Norge» verken rettferdig eller likestilt. Her har hvor langt du kommer i livet ingenting å gjøre med dine egne ambisjoner – og alt å gjøre med hvem foreldrene dine er.
– Født funksjonsnedsatt? Neida, vi vil ikke ha deg.
– Blitt kronisk syk på grunn av helseproblemer? – Nei, vekk med deg!
– Nevrodivergent? – eh – Nei! Enten er du som alle de andre sauene, eller så er du ikke her i det hele tatt.
– Ungdom med lav inntekt? – Ehm; lærte ikke foreldrene dine deg å begynne å bygge nettverk i en alder av 5 år!!
– Innvandrere? – Neida! De stjeler både alle jobbene våre, samtidig som de bare sitter på sofaen og får penger fra staten!
– Folk hvis foreldre har feil nettverk, og som ikke bare kan ‘ringe’ noen – Looooser!!!

Som norske aviser skriver:

«Uten et godt nettverk er du sjanseløs i de spennende jobbene.»
– Dagbladet 2001
(https://www.aftenposten.no/norge/i/x3VWV/viktigere-aa-vaere-populaer-enn-dyktig-i-jobben)

Videre skrev Aftenposten i en artikken fra 2010 at det er :

«Viktigere å være populær enn dyktig i jobben […] Selv om du er den dyktigste faglig sett, så risikerer du likevel å havne bakerst i jobbkøen, fordi du ikke har de riktige kontaktene»
– Aftenposten
(https://www.dagbladet.no/nyheter/nettverk-er-nokkelen-for-jobb/65724831?)

I Februar 2025 kom også The Local Norway ut med artikkelen «A hidden job market’: Why networking in Norway is essential for finding a job».
(https://www.thelocal.no/20250204/norways-hidden-job-market-why-networking-is-essential-if-you-want-to-find-work?).

Dette er med andre ord ikke en hemmelig fakta, og utviklingen av dette har pågått i minst 20 år.

Konsekvensene Ingen Vil Diskutere
Realiteten er at når arbeidsgivere bare ansetter sine egne kretser, gjør dere følgende:
– Dere undergraver innovasjon; uansett hvor smart, hvor innovativ og hvor kreativ du er, vil du aldri bli bedre enn den beste i kretsen. Når alle da er blitt like gode stagnerer utviklingen.
– Dere straffer kompetanse; hva er poenget med å bruke tid, energi og penger på å utvikle seg, dersom det som faktisk spiller noen rolle er hvem du kjenner?
– Dere lønner kjennskap fremfor ferdigheter; korrupsjon er korrupsjon uansett hvordan man vrir og venner på det.
– Dere setter de mest sårbare i en evig ulempe med sykdom eller funksjonshemming; mange av oss lever under fattigdomsgrensen, og uten mulighet til å bygge ‘attraktive nettverk’ vil våre barn ende opp uten de samme mulighetene som andres barn. Det å straffe barn for at foreldrene er født/ er blitt syke, er ummeneskelig i seg selv.
– Dere skaper fiendtlighet for alle som ikke sosialiserer lett; Mange nevrodivergente har vansker for å sosialiseres fra en veldig ung alder. Istedet for hjelp og mulighet, blir disse satt utenfor, ofte uten å skjønne hvorfor selv.
– Dere presser marginalisert ungdom mot gjengmedlemskap og kriminelle grupper: Ungdom som vokser opp i et samfunn der de hverken aksepteres eller får tilgang til muligheter som andre rundt dem får, vil ofte være lettere lurt inn i kriminelle miljøer, som det senere er nesten umulig å komme ut av.
– Dere kaster bort offentlige penger: på overdrevne byråkratiske stillinger som betyr lite i det store og hele, på bekostning av stillinger og samfunnsgrupper hvor den samme pengesummen kan være uvurderlig.
– Dere lar kvalifiserte mennesker falle mellom sprekkene: til fordel for nabosønnen hvis far er en advokat.
– Dere gjør Norge mindre rettferdig og mer ulik – år for år (her trengs det vel ingen forklaring?).

Og dette er ikke milde problemer heller, de er et store, og på et nasjonalt nivå!

En Kort, Men Ærlig Personlig Bemerkning
Som tenåring ble jeg selv ansatt i småjobber grunnet nettverket jeg og mine foreldre hadde. Jeg skriver ikke dette for å påstå at jeg selv ikke har sett de individuelle, positive sidene ved dette. Det er heller nettopp fordi jeg har vært vitne til det, både fra den positive – og den negative siden at jeg vet hvor dypt og urettferdig systemet er.

Et Siste Ord Til Norske Arbeidsgivere: Dette Er Ditt Vendepunkt!
Hvis du som arbeidsgiver ønsker ekte kompetanse, er du nødt til å åpne rekrutteringsprosessen.
Hvis du vil ha lojalitet på arbeidsplassen, må du slutte å bare ansette tremenningens beste venn.
Ønsker du mangfold, innovasjon og fremtiden du hevder å støtte, må du velge personen med ferdigheter over personen du deler kaffe med hver dag.
– Og for pokker, hvis du ikke er interessert i noen av disse tingene, ha integriteten til å innrømme det!

Norges arbeidsstyrke skal ikke være en privat klubb!

Og til dere ansatte som føler seg usynlige.

Vit at du sannsynlig aldri har vært problemet.
Systemet vi er tvunget til å eksistere i, er problemet.
Din verdi måles ikke etter hvor mange mennesker som tilfeldigvis kjenner navnet ditt. Kompetanse din er der, og den er sann
– selv om portvokterne til betalt arbeid later som de ikke ser den, til fordel for sin nyutdannede niese eller nevø.

Enten det er nå eller mye senere, vil fremtiden forandre seg. Den er rett og slett nødt til det, for å ikke stagnere. Det er bare å se på historien.
Men for at dette skal kunne endre seg i løpet av min levetid, er vi nødt til å begynne å fortelle sannheten om systemene vi har bygd.

Systemene vi lever i.

Og erkjenne hvorvidt vi godtar de eller ikke.

—

– Silje

________________________________________________________________________________________

When Competence Isn’t Enough: A Letter to Norwegian Employers

If you are a Norwegian Employer, this is for you.
Not as an accusation, but rather as a mirror – because every worker in this country can already see the real truth you keep trying to soften with words like «good chemistry», «trust» or «cultural fit».

Now, If you are an employee who has felt shut out – especially if you are in any way disabled, neurodivergent, or simply born withouth the «right» network – this is for you too.

Let’s Begin With What No One Dares to Say Aloud
For some reason, we pretend that Norway’s hiring problems are about the lack of skills, lack of motivation, lack of discipline or even personality-issues.
We pretend that disabled (or otherwise»unfit») applicants are rejected because they «can’t keep up», lacks the nessessary skills – and that young people simply fall outside the system because they aren’t trying «hard enough»

But the truth – the real truth – is alot older than any of this;
Because, Norway runs on nepotism.
– not on merit
– not on fairness (despite trying to bully everyone into thinking as such).
– and definately not equality
Nepotism!
And yes, we can call it what it is: corruption in a wool cardigan.

Why Nepotism Feels So Harmless to Employers
Employers often justify nepotistic hirers in wannabe-reasonable ways;
– it’s easier to hire someone I already trust, who I know will do their best
– We can’t risk making the wrong hire, as it’s way to difficult to fire people in Norway
– We need stability, not uncertanty.

And sure, on the surfass, this kind of mentality may seem harmless:
Instead of hiring an uncertain person with the right credentials/ experience, you hire your colleagues son, or your sister’s friend. Someone you went to school with, or someone you workout with.

But what is never mentioned is the huge cost this kind of ‘comfort’ leads to.

The Cost of Comfort: A Quet Class System
From a very young age, Norwegian children are taught that we are all equal under the law.
But our workforce tells a very different story.
When «who you know» becomes more important than «what you know»/ «what you can do» – you don’t just create exclusivity, you create a class society.

And that is extremely hypocritical, as the fundamentals of class societies, is the exact opposite of the values Norwegian culture claims to impose on it’s citizens, and the whole «rules for thee, not for me» does not fit in.
Norwegian culture claims to be fair and equal to all people
– but when a countries laws are countinously broken by a large amount of its employers – and this unlawfullness affects the most vulnerable citizens the worst,
I think Norwegians should accept that the old Norwegian values are dead.
Instead, the ‘New Norway’ is neither fair nor equal. Here, how far you come in life has nothing to do with your own ambitions – and everything to do with who your parents are.
– Born disabled? Nah, we don’t want you.
– Gotten chronically ill due to illness? – Nope, away with you!
– Neurodivergent? – Nu uh!, Either you’re like all the other sheeps, or you’re not here at all.
– Low Income youth? – Umm – didn’t your parents teach you to start networking at the age of 5!!
– Immigrants? – Heck no! They steal all jobs that are payd unlawfully little, and only give it to families abroad!!
– People who’s parents have the wrong network, and who can’t just ‘make a call’ – Looooser!!!

As Norwegian newspapers write:

«Without a good network, you have no chance in the exciting jobs.»
– Dagbladet, 2001
(https://www.aftenposten.no/norge/i/x3VWV/viktigere-aa-vaere-populaer-enn-dyktig-i-jobben)

Furthermore, Aftenposten wrote in an article from 2010 that it is:

«More important to be popular than skilled at work […] Even if you are the most skilled academically, you still risk ending up at the back of the job queue, because you do not have the right contacts»
– Aftenposten, 2010
((https://www.dagbladet.no/nyheter/nettverg-er-nokkelen-for-jobb/65724831?)

In February 2025, The Local Norway also published the article
«A hidden job market’: Why networking in Norway is essential for finding a job».
(https://www.thelocal.no/20250204/norways-hidden-job-market-why-networking-is-essential-if-you-want-to-find-work?).

In other words, this is not a secret fact, and the development of this has been going on for at least 20 years.

The Fallout No One Wants to Discuss
The reality is that when employers only hire from their own circles, you are doing the following:

– You are making Norway less fair and more unequal – year after year (no explanation needed here, right?).

– You are undermining innovation; no matter how smart, innovative and creative you are, you will never be better than the best in the circle. When everyone is equally good, development stagnates.

– You are punishing competence; what is the point of spending time, energy and money on developing yourself, if what actually matters is who you know?

– You are rewarding knowledge over skills; corruption is corruption no matter how you twist and turn it.

– You are putting the most vulnerable at a perpetual disadvantage with illness or disability; many of us live below the poverty line, and without the opportunity to build ‘attractive networks’ our children will end up without the same opportunities as other people’s children. Punishing children for being born/having become ill is inhumane in itself.

– You are creating hostility towards anyone who does not socialize easily; Many neurodivergents have difficulty socializing from a very young age. Instead of help and opportunity, they are left out, often without realizing why themselves.

– You are pushing marginalized youth towards gang membership and criminal groups: Young people who grow up in a society where they are neither accepted nor given access to opportunities that others around them have, will often be more easily lured into criminal environments, from which it is later almost impossible to get out.

– You are wasting public money: on excessive bureaucratic positions that mean little in the grand scheme of things, at the expense of positions and social groups where the same amount of money can be invaluable.

– You are letting qualified people fall through the cracks: in favor of the neighbor’s son whose father is a lawyer.

And this is not a mild problem, it’s a huge, national one.

A Brief But Honest Personal Note
As a teenager, I myself was employed in odd jobs due to the network that my parents and I had. I am not writing this to claim that I have not seen the individual, positive sides of this myself. Rather, it is precisely because I have witnessed it, from both the positive and negative sides, that I know how deeply and unjust the system is.

A Final Word to Employers: This Is Your Turning Point
A final word to Norwegian employers: This is your turning point!
If you want real expertise as an employer, you need to open up your recruitment process.
If you want loyalty in the workplace, you need to stop hiring just the best friend of the three.
If you want diversity, innovation, and the future you claim to support, you need to choose the person with the skills over the person you share coffee with every day.
– And damn, if you are not interested in any of these things, have the integrity to admit it!

Norway’s workforce should not be a private club!

And To Employees Who Feel Invisible.
Know that you have probably never been the problem.
The system we are forced to exist in is the problem.
Your value is not measured by how many people happen to know your name. Your expertise is there, and it is true
– even if the gatekeepers to paid work pretend not to see it, in favor of their newly graduated niece or nephew.

Whether it is now or much later, the future will change. It simply has to, in order not to stagnate. You just have to look at history.
But for this to change in my lifetime, we have to start telling the truth about the systems we have built.

The systems we live in.

And acknowledge whether we accept them or not.

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:

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.
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.
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):

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?
How did it make you feel – seen? used? unsafe? powerful? mixed?
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

When Inclusion Becomes a Trend – But Accessibility Isn’t

«Representation is powerful – but inclusion is action».
– Stella Young

Scroll through social media for no more than five minutes, and you’ll see it: brands posting proud photos of employees with disabilities, campaigns celebrating «accessible workplaces» – or even #Inclusion trending in stories and feeds.
It feels hopeful… Like a promise.
But sometimes promises fall flat.
Just take a look at the job adverts you’ve applied for. Or the interviews you’ve attended. And the rejections you’ve gotten from it.

I do, and cant help but sit and wonder how many of those inclusion posts were just that – posts?

The Trend of Inclusion
From 2024 and onward,majour industries and high-profile companies have continued to declare that they are embracing disability inclusion.
The data however, tells a different story.
According to the OECD report Disability, Work and Inclusion (2022), people with disabilities in many countries remain about 40% less likely to be employed than those without (OECD).
Furthermore, in the Nordic Region, a deep-dive intoo the matter found the disability employment gap (DEG) shrank only a fifth between 2014 and 2023 – and that, despite having higher education, people with disabilities still faced majour barriers while looking for employment (pub.norden.org).

So yes – inclusion is being talked about. But accessibility; real adaption, actual hiring of disabled people? That’s still lagging behind.

The Gap Between Trend and Reality
Let’s pull apart why brand-inclusion and actual employment diverge so much:

Regardless of fields, regardless og companies – and regardless of whether its (tecnically) legal or not, hiring is still heavily biased. Studies in Norway found that even qualified candidates with disclosed disabilities recieve fewer callbacks than non-disabled peers.(pub.norden.org).
Many organizations treat accomodation as cost, not as an investment for further progress – as symbolic inclusions is easier than structural change. (sjdr.se)
Inclusion campaigns often focus on public images (representation) – rather than action (accessibility). A ramp might be built, but the role remains inaccesible for anyone needing to use it.
A 2017 statistics article from Norway found the employment rate among disabled people aged 15 – 66, was only 43% – compared to 73% for the whole population (SSB).
Then a recent 2023 update from Statistisk Sentralbyrå shows the employment rate of people with disabilities to be 52%, – while it is about 81% for the rest of the population (Statistikmyndigheten SCB).
Lastly, a study on employer attitudes in Norway, containing 951 Norwegian employers, and 8404 job seeker profiles, found that there’s a significatn hiring gap for candidates with disabilities – and that this gap varies substantially by industry. (sjdr.se).

All in all, the problem is pretty simple: when inclusion is a trend – we, as in disabled people, risk being celebrated tokens; visible for the photo, but invisible for the payroll.

My Story: When Accessibility Fails the Trend
While I have already mentioned this many times before, I wanted to reiterate it for the purpose of this post.
For two years I sent in over 400 job applications with no luck.
Despite a resume filled with various experience, despite my education and despite my ambition, I’ve repeatedly hit walls with no explanaition.

Jobs that said «flexible work-time» that actually meant «always be on». Interviews that praised my qualifications – with words like «With that resumé we have to get you intoo work!» – only to shut down right in my face.
Or several offers of volunteer work, but no paid employment…
Because I can’t pretend I don’t have epilepsy. I mean, spend more than an hour minutes with me, and you’ll come to find out one way or another…
And, legal or not – many workplaces still operate as if disability is a «nice to have» extra, not central to how work is organized.

And this infuritates me deeply. Not because of my story alone – but because I know people with several disabilities who are practically the heart and soul of their workplace. Who – when sick or on vacation, leaves the whole space in an uproar. And yet they’re supposedly ‘unessesary?» – Give me a break!

However, during this time of mindless searching and applying, I realised something…
While the trend might shine lights on inclusion, the system itself doesn’t always move. Because, it’s foundations aren’t built for people like me.
So, Instead of feeling sad or angry about it, I decided to shift instead,
Instead of waiting for the system to change, I began building my own. I created my first book – a productivity planner designed for me – and for all others with disabled-rhytms. I launched this blog, which is a nice way for me to feel a sense of purpose in my daily-life, even if no one ends up reading it.
Because, when the world won’t hire you, sometimes you have no choice but to build your own path, and just hope it leads somewhere…

Reframing the Narrative
So, here’s the good news, from me to you; you don’t have to wait for the trend to meet you.
You can define your own form of inclusion.
Instead of measuring yourself by the world’s blueprint of «full-time work»,
you measure your own blueprint of what you can do, what you value, and how you want to live. Sure, you may not be able to change your disabilities. If that’s a fact, the better way is to find a way to live with it, to the best of your ability. You buid tools for yourself – (like I build my planner) – through forms of creative work (or something else) – that fits you.
And you do this on your own time!

A Task for You
Choose one action this week:

Send one message to a company asking how they include disabled team members (not just if they do) – ask real questiuons.
OR, launch one project for yourself – a blog post, a creative piece, a micro service – and label it: «I made this for me, because I won’t wait for someone else to do it».
Record how it feels. What changes? What stays the same?
Let it be your measure of inclusion.

– Silje

The Shape of Hope: Redefining What Progress Looks Like

Even the smallest person can change the course of the future.»
– J.R.R. Tolkien, The Lord of the Rings

The Shape of Hope
For many, the ‘standardized’ concept of hope is an unfamiliar subject. It tends to move quickly and burn bright; like changing the world overnight.
But whether we are aware of it or not, the shape of hope is not tied to this ultra-speedy nature.
Most of my own interaction with the subject, is a type of hope that moves kind of like water; it’s slow – quiet, and utterly relentless!
With this type of hope, progress doesn’t follow the world’s idea of sucess. It’s not about sprinting to the finish line as we’ve been told to do, but rather about adapting to the current; flowing ahead live rivers carving through stone; patient and determined.

Whether your own experience with the feeling of hope stems from the ‘standardized’ or ‘slower’ type – for many disabled people, we have no choice in the matter…
In the last few years, I’ve learned to stop measuring my life by the pace other expect.
What’s interesting about that (at least to me), is that I’ve never really cared about other’s people’s perception of me – and I’ve never truly done anything for the validation of other people. Yet, even I have had personal expectations towards the progression of my own life, which have largely been based on the ‘standardized’ progress of other people.

In some ways this can be good, for finding out where you belong on the ‘scale of life’. Yet in other ways, it can lead to people acting inauthentic and misaligned with their own hopes and dreams; which in turn may lead to feeling even worse about onesself.

So, Instead of attempting to continue my life’s progression through the pace of someone who isn’t partially disabled, I decided to follow my hopes and dreams through the lens of someone who is. Following a pace that is fitted for me, recognizing that I might have to do thing differently than what I was taught growing up – and recognizing that this does not have to be a negative adaption.

And the result of that, has changed not only the way I view my own life, through its bits and pieces, but also the way i look at hope.

Doing things slowly, just means that the foundation is built before what makes you see true progress. In turn, said progress is much more likely to stick – and adapt whenever it needs to.

As an example;
I’ve wanted to loose weight since I was a preteen, but it was only during the last two years that I’ve been able to loose it. By that time I’d, consulted a woman about my eating habits – found out it was my genetical diseases and not my diet that kept me overweight (for the most part) – and (despite my scepticism), when I finally agreed to try these ‘diet perscriptions’ I suddenly began loosing weigh.

By that time, however I had already been working out with a physiotheraphist for almost 10 years, building muscle. I’d started slowly bying nice clothes in smaller sizes, while also learning how to sow in various clothes myself. I had a small – yet effective skincare routine, to stop my skin from sagging to much, and had a list of healthy meals to make sure I ate what my body needed.
Furthermore, the things I used to dislike about my body (like having a very thick bone structure) suddenly worked in my favour, as my very slow progression and heavy training lead to loads more muscle, and very little loose skin overall.
All this was my foundation, and it has been adapting constantly!
Now, I’m still not finished with my weight-loss; will in fact probably take another full year before I’m done, but now that my foundation is fully set, the hope of being as healthy and fit as I wish is much – much closer!

Progress Loves Progress
Interestingly eniough, I noticed that as soon as my hope of loosing weight started taking a turn for the better, so did several of my other hopes and dreams.
And when I look at what I’ve actually built during the last two years, I am truly proud of myself (which isnot something I often get)!
I managed to built a blog despite being terrible at internett-stuff in general.
I made a hardcopy book from scratch, despite not knowing the full production beforehand.
I started making videos and recording monologues, despite not knowing how to properly edit it – something I never thought I’d be able to do!

And each of these are the beginning of a new foundation.
Each took time, energy and heavy faith in myself, when the world didn’t see what I could do. You know, the kind of faith that came from me showing myself that when I hope for something (like loosing weigh) I manage to do it…

And when I stopped waiting for permission and just started creating something of my own, I realized something radical: even if other’s can’t see my potential, I do.
And that is enough to keep growing!

What Progress Looks Like
Progress for me, isn’t about speed or competition. It’s about direction.
I would much rather move slowly and steadily the right way – one step, one breath and one word at a time – than risk being torn to pieces with a limb in every direction.
Others might differ.
Many, especially those whose potential speed exceeds my own, might use said speed to have faster, more scattered progress – to each their own.
Sometimes, hope is about trusting that ones own path, however winding, has a meaning. That every small act; a sentence written, a post published, a quiet morning spent reflecting – is progress in itself.

After all, hope of progress can be found where you’re able to look for it!

«Hope is not the conviction that something will turn out well, but the certainty that something makes sense.»
– Václav Havel

So if you’re reading this and you feel left behind, invisible, or unsure of where you’re heading – Take a breath. And pause.
Look at how far you’ve already come, what you’ve already built in the dark. And believe that you are further along than you think.

Because, hope isn’t a finish line. Rather, it’s the shape you carve out with your own persistance; fast or slow, steady – and unimaginably strong!

—

Photo by Rosie Kerr on Unsplash — Image by: Rosie Kerr @Unsplash

Reflection Task
This week, take 15 minutes to write down three things you’ve done during 2025 that past you thought was impossible. Don’t measure them by how big or ‘impressive’ they are – measure them by how much they mean to you.
This is the shape of hope!

– Silje