I Still Matter

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.

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6 thoughts on “I Still Matter

  1. I’m in a similar position… I’ve been in a psych hospital for 3 years, never paid taxes and it’s going to be a while before I can work again. And I matter. Thank you for making me realise that.

  2. This nonsense reached a peek a few years back when one campaign group attempted to accumulate people’s stories of work before they became incapacitated. I think they only got three before it petered out, because the first three were all folk who started up some capitalist enterprise in primary school and worked until near deadly collapse. So even most folk on ESA who have worked couldn’t very well compete.

    This is all about the charity model and the idea that benefits (and any other accommodations) are provided out of compassion for folk who have demonstrated that they deserve them. It really is a step backwards for disability rights and plays into the hands of folk who enjoy the power of speculating about who is and who isn’t deserving enough.

  3. Yup, I’m 26 and have also never worked, and I feel even less like I matter because I don’t even have the spoons to try to get benefits.

  4. Your posts here are incredibly brave. You have every right to feel this way, and I hope this will encourage more people to speak out against the sickening narrative of “deserving” versus “undeserving” sufferers.

  5. My illness hit hard at age 21 but I can’t get on disability because the doctors basically ignored my symptoms until I was maybe 23-24. Because I don’t have paperwork saying “this person is disabled” from 2011 I can’t get any social security benefits (well I technically could get the lower ssi.. which would likely barely cover just my medication so it would just delay the inevitable).

    I have a genetic condition so I couldn’t ever hold a job. So I am not worth helping. Ironically if I had been “irresponsible” and dropped out of school as a teenager and got a job I would probably qualify but because I stupidly went to college I wrecked my health working for no money and no credit. I couldn’t even finish my degree all that money wasted.

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