Tag: disabled life

A question with some unpleasant baggage

What is one question you hate to be asked? Explain.

Writing prompt of the day

“What do you do?”

I hate this question so much but I imagine that to many of my readers it seems entirely innocuous. I want to unpack some of the unpleasant baggage this question is carrying around.

What someone means when they ask this question is “What do you do for work?” but that’s not really what they’re asking. This question is an invitation to justify your existence and to reveal your class and status. I think a lot of people don’t really mean it like that. They’re asking it as an icebreaker and they think the worst thing about it is how bland it is. It doesn’t feel bland to someone who’s struggled with unemployment.

Back when I could still work I often didn’t because I couldn’t persuade anyone to employ me. It’s hard not to take unemployment personally. It feels like everyone else can get a job and that you’re stuck at home being a drain on society. Being unemployed can feel like you’re failing at the most basic things about adulthood. And then you’re introduced to a new person and the first thing they do is to ask you what your job is.

“What do you do?”

“Nothing.”

If you’re choosing not to work because of your mental health then this question feels like an attack. How can your mental health be incompatible with work? How dare you prioritise your wellbeing over your economic value.

If you can’t work outside the home because you’re a carer, either for children or for vulnerable adults, then this question is a chance to be reminded that nobody regards caring as “real work”.

If you’re an artist of any kind then this question is a reminder that not only do people not think art is a “real job” but they also don’t think that artists should get paid.

“What do you do?”

“I’m an artist/writer/actor/film maker.”

“No but what do you really do? What do you do for money?”

If you’re retired, or if you can’t work because you’re disabled, then this question is another reminder that your not a real person in the eyes of a lot of your peers. That’s why people are happy to pretend that the pandemic is over. They’ve convinced themselves that it’s only the old or the sick that have to worry about dying and that’s not a problem because…

A lot of people making this calculation don’t even finish the thought. They don’t really confront what they’re saying by equating someone’s value with their ability to work. They certainly haven’t thought about the fact that many elderly and disabled people do actually work, or contribute to our societies in other ways. It’s a mental dead end that prevents them from absorbing the horror of the idea that almost all of us will become worthless to capitalism eventually and that when that happens we’ll be an abstract on the other side of a string of dots

The Destiny Scam

Do you believe in fate/destiny?

Prompt of the day

Excuse me while I get the hollow laughter out of the way.

Of course I don’t believe in fate or destiny. If I did I’d have no option but to lay down and die. That’s the kind of destiny that people like me get. We die tragically in the background, or we endure in suffering in order to serve as a good example.

There’s no place for me in the future unless I chose to make one. I’m old, I’m fat, I’m ugly and I’m disabled. If I’m in a story it’s as a bad guy. In fact I am in a story as a bad guy. I’m on the news as a bad guy quite often. Not me personally but both fat people and disabled people are regular bad guys on various news programs.

Of course when I was a teenager I thought that my weight was standing between me and my destiny. I wanted to do big, important things and I knew that fat people, particularly fat women, didn’t get to do big, important things. I thought that if I lost enough weight then maybe Destiny would come calling.

That did not happen. I did lose weight but nothing changed. My weight was not the fundamental problem of my life that I had been told it was. Destiny wasn’t calling because Destiny doesn’t exist. Destiny is just a scam made up to sell horoscopes and persuade people to stay at home and wait for change rather than going out and making it happen.

Managing my life.

As I become more disabled my everyday life becomes more and more like running a small business. These last few weeks I’ve been hiring cleaners, delegating tasks to them, delegating related tasks to my spouse and managing the household budget so that we can afford to pay wages.

I’ve also been writing my podcast, working on paintings and trying to build an online platform. I’ve invested in Ko-fi gold, that’s the paid version that allows the posting of larger images and has more customisation options. I haven’t worked out what to do with it but my most recent post there is HERE. I haven’t blogged much this month but my most recent post was over on the Stick of Doom blog.

Being the manager of my own life works better than trying to live it like an able-bodied person but it’s not without cost, both financial and mental. I don’t know how sustainable it is. I’ve already had to give up on the idea of saving enough money to buy a new rise and recline chair. The money I’ve been saving will have to go to pay for the cleaners. This means that I need to try to find a new way of raising the money for the chair. If I try to do without it I’m going to end up with cellulitis, leg ulcers and maybe septicaemia (I really recommend that you do not do an image search on those things).

And speaking of image searches (worst segue of the year), I’ve already mentioned the digital paintings. This month I’ve done a couple of portraits and I’m working on a painting of Glen Etive. I’ve started to document my process so I can post about it for other people who use Procreate. I don’t really want to start yet another blog but the painting stuff doesn’t really fit in either here or over on the Stick of Doom. Maybe I should post that directly to Ko-fi?

So what is all this adding up to? I honestly don’t know. There are people who can make a good living via Patreon and Ko-fi but I have no idea how they do it. They probably start from a position of feeling like they deserve to be paid for the work they put in. Maybe that’s something I should be working on.