It’s not easy, standing up to your friends. But I feel that I have to. My friends and fellow fighters of the left, of the disabled people’s movement, the intersectional feminists, the anarchists and all those fed up of cuts, a choice of any political party you like as long it’s neoliberal and poverty for the masses. Everyone seeking justice in this broken country… we’re friends (if sometimes a bit grudgingly) and I need to stand up to you.
I need to stand up and say: I have never been employed, I will likely spend my entire life living off social security andI STILL MATTER.
And I feel like I don’t. Because a lot of you are sure acting like I don’t matter. Over and over and over and over I’m seeing a narrative of disabled benefit claimants that begins with how many years someone was employed before they became ill. And how long they kept going working themselves iller and iller doing part time work and not claiming benefits. And how ashamed they were to need to claim benefits at all. And at least one mention of how they paid taxes all their working life. This is almost always the beginning of the story. This is how over and over and over we are choosing to tell our stories and how over andover others are framing our stories for us.
Always the emphasis on how hard we worked “before”, how ashamed we are and how we desperately wish we could get a job, any job, to make our lives mean something again.
NO NO NO NO NO.
This is fast becoming the “acceptable narrative” of disability and it shouldn’t be. It makes people like me (and there are thousands like me) feel invisible and like we don’t matter. And it leaves the right-wing ideas of (employed) work as an inherent good and the source of all personal worth and meaning intact. It lets us be split into “deserving” and “undeserving” crips, with those like me who didn’t have the foresight to get in a few decades of employment before becoming seriously ill (my illnesses hit me when I was 22) not really deserving to be given money to live off while those who worked themselves past the point where they were well enough to and claimed their benefits with reluctance and shame deserve theirs. I know it’s far more messy and complex and human than that. So do you. Yet the stories that are being pushed and getting coverage, getting shared widely… are all the same. Someone worthy of benefits because they worked hard for decades and/or became disabled while doing a very dangerous job. Someone who says (or can be misconstrued to say) that they did everything they could to keep working and not apply for disabled people’s benefits *that they knew they were entitled to* until there was no other choice.
I matter even though every single hour of work I’ve done was voluntary and unpaid. I matter even though the amount of unpaid work I do has massively reduced as dealing with chronic illness has taken over my life. I matter in the weeks where I do no work at all. I matter even if I never get paid for work in my life and even if the only income I ever have is from benefits.
I matter no matter what I spend my poverty money on – no matter who would or wouldn’t approve.
I matter even though I see no shame in where my money comes from.
I matter even though I’m a young adult. I matter even though my illnesses are misunderstood.
I matter even though I’m mentally ill.
I matter. I matter. I do.
My story of being a disabled mentally ill teen who became chronically physically ill and even more mentally ill while at University is far, far from unique. My relative lack of shame about claiming the social security available to me is not rare and is – and has to be – perfectly reasonable and acceptable. My story has to become an “acceptable” narrative too or we’re playing right into the hands of the right-wingers and neo-liberals who want to measure human worth in hours of paid employment.
If you’ve worked – whether for money or not – for decades and then become ill or disabled, then you matter and your story matters. As long as me and my story get to matter too.