(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