This week, I had several massive epileptic seizures. Not metaphorical ‘massive’ – or ‘bad days’ massive, but real – body-breaking, tonic-clonic seizures. These are the seizures I hate the most, and the weeks that I have several of them, well – quite frankly, it’s dangerous. They come, completely out of no-where, frying up my brain to the point where it takes several hours to get back from feeling slow and foggy. And then, in addition to feeling like your head is about to fall off, the muscles in your entire body is burning, joints may be out of place, bruises are forming everywhere – and there’s a constant question of whether the current bumps forming in your head warrants a trip to the emergency room, or if you can avoid it.
These elements after the fact, does not just go away once the seizure is over – no, it can last for days, as your body is re-mending. This time I was unable to sleep for an entire day, as I couldn’t turn my head, couldn’t use my right arm and couldn’t sleep on my back.
And while I sat there, aching – flickering and trying to reassemble myself, something else was happening as well. Norwegian Professor, Ragnar Torvik, in a widely circulated opinion-piece, decided to tell the Norwegian country that people like, well – me (that is, government-funded, disabled people below and around the age of 30) – we are simply lazy, and the most dangerous thing to happen to Norwegian society. His words circulated in (as far as I know) several major newspapers in Norway – I personally read it quite unintentionally in Bergens Tiende.
Now, it should be said, that while Torvik’s co-called «analysis» might have been aimed at systemic numbers, the impact is always deeply personal. Because, I never chose to be born, I never asked to be born with epilepsia, EDS and all other genetic impracticalities that is in my veins. In fact – I’ve worked for most of my life, pretending that these things were a non-factor, and what do you know – it only made me sicker!
Now, don’t get me wrong – are there people who don’t want to work, and who pretend to be ill? Sure.
Are the majority of government-funded under 30s just pretending-disability? ABSO-FREAKING-LUTELY-NOT!
Because, when you – as Torvik and his (many) followers paint a brush that wide, you hit real people. People who are already exhausted. People who’s been sick since birth! People who also know there’s nothing they can do to change the way they were born – but who still try every-day to to live in bodies that won’t cooperate, in a system that barely sees them.
And remember, those are the people who’s most likely to read-and care about these opinion-pieces. Because the few people who actually don’t wish to work, they couldn’t care less.
I didn’t ask to be born sick.
But here I am – living, enduring, adapting.
And now, apparantly – I am also being blamed.
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However, let’s be clear about what’s actually happening here:
This isn’t an economic discussion. It’s a cultural story – one that is being written, once again about us, not with us.
And the narrative is tired:
«Young people don’t want to work!»
«Welfare is too generous.»
«They’re not really that sick.»
No data presented. No nuance. Just lazy scapegoating disguised as analysis.
As Alice Walker once said:
«The most common way people give up their power is by thinking they don’t have any.»
So here I am – reclaiming mine. With words. With truth. With the full, inconvenient weight of my disabled body, and the lived experience that follows along with it.
Because I may be tired, but I am not silent.
The point of the matter is as follows;
I have complex epilepsia.
It was not caused by poor choices, or lack of work ethic, or too much time!
It’s neurological – and most likely lifelong. I was born this way – and until the day I die, I will have to live this way.
And believe me, that is no-small-thing.
For me, it means, a couple-handfulls of medications at least twice a day – and another handful to get over all the side-effects.
It means pysiotheraphy 3 times a week, just to keep your body afloat, and regular visits to several doctors to make sure things are ok-ish.
It means not being allowed to drive a car, and the likelihood of being picked up by an ambulance every-time you’re on a buss or a train. It means not being able to take a shower or (even worse – a bath!) without someone watching you. It means using filtered-glasses daily, even just for going to the toilet. It means needing everything from 9-17 hours of sleep every day. It means the likelihood of not ever getting a job (regardless of how much you can work) – and no matter how ambisious you are, because todays job-market can’t handle someone with daily seizures.
And apparantly, it means being blamed for all bad decisions government(s) make, because Its so unfair that I should be payed for all the medications I. Need. To. Stay. Alive!
Now, I’ve spent years working to stay upright and engaged. To build a life that fits the rhytm of my body. Not because I gave up trying to surpass my disabilities, but because I knew I needed to take my disabilities into account If I wanted to survive. And I fought like hell to do so. Still do!
And yet – here I am, lumped in with imaginary, lazy people, treated as a burden by those who have no idea what it means to wake up in a body that constantly betray you – and an unopperative brain that is either going to give you seizures, or (if it were to be operated) likely make you blind.
Know that, we aren’t «outside of the workforce» because we want to be. We’re outside because the world – and workforce was designed without us in mind.
I know many people (myself included) who’ve been denied work, face-to-face because of disabilities. Even though this is illegal discrimination according to Norwegian Law. So my question is, why are we – the sick and disabled, blamed for not working, when (in most cases) the only reason we aren’t is because those payed to hire us, choose not to?
_____
You don’t know how much it costs me to take the buss. Or how long I need to recover from grocery shopping. You don’t see my physiotheraphy appointments, visits to the chiropractor, doctor, neurologist, the medical side-effects I deal with every day, knowing I’ve tried all the medications I can (litterally!). And you don’t see the shame of asking for help to pay my bills, in a society that punishes dependence.
As author Sunaura Taylor writes in Beasts of Burden:
«The able-bodied world cannot imagine our futures because it refuses to accept our present.»
Because, that’s the heart of it, isn’t it? They don’t want to see us. So they call us lazy instead. Because that’s easier than confronting the fact that some people can’t be ‘fixed’, and never needed to be.
___
However, all is not without hope. For example, this post is inspired by a beautifully sharp and honest Facebook post from a Norwegian legal-expert, which was later published in the paper Aftenposten: (https://www.aftenposten.no/meninger/debatt/i/GyWPkQ/arbeidslivet-maa-endres-hvis-flere-ufoere-skal-i-jobb)
His words are like oxygen i a room that has gone stale. It’s a reminder that we are not imagining this. That we’re not alone. That someone out there get’s it.
Because here’s the truth:
This has never been about policy. It’s about power.
It’s about who get’s to speak. And who get’s to exist without apology.
So, If you’re disabled and feeling crushed by this current rhetoric – I see you.
This is not your fault. This isn’t on you to fix. And you are not ‘lazy’ just for living in a body that demands care. Remember:
- You are allowed to rest.
- You are allowed to need help.
- You are allowed to exist without having to prove your worth.
- You are allowed to be sick without being a scapegoat.
Rest is not resignation. Support is not shameful. Your life – just as it is, is worthy of respect, protection and piece.
So if you have the energy; speak up! Share your story. Vote. Organize.
And if all you can do today is survive; like me yesterday; then you’ve already done more than they could ever understand.
And finally, to Professor Torvik, the ones who gave him platforms – and all the people who mindlessly follow the same rhetoric; You failed in your humanity.
Because I refuse to be a scapegoat to someone who doesn’t even understand that sickness can come to us all; from tiny babies to pensioneers. And thinking it’s easy to just ‘get a job’ for those of us who are sick, just illustrates how little you actually know.
– Silje
