Hard truths
Originally posted by stephanieburgis at Hard truths
There's a blog entry I've been wanting - or, really, needing - to write for a while, but I've been resisting it. The problem is, this blog is my safe space, the place I come to hang out with my friends and be the person I identify as, the one who's all about books and magic and highwaymen and romance. It's not about the body I've been stuck in ever since I got CFS, the one that sometimes won't even stand up or walk, so I have to crawl to get from room to room.
I don't want to talk about that part of my life here, because it sucks, genuinely, and it's not what I want to focus on. I am not my disability. But the problem with not talking about it is that there are other people talking about it all the time. Right now benefits programs are being slashed and burned in the UK, with no major protests against it. And everyone knows the biggest reason not to talk about having a disability: shame. Who wants to identify as one of those people, who are probably all cheats anyway? Because we all know "most" people on benefits are cheats. "Most" people who claim not to be able to work are just lazy.
And that social message gets hammered in all the time, in so many ways. Most of the time, I wince but ignore it. Sometimes it hits me like a personal slap in the face. That's what happened recently.
There's an author whose work I've always loved (and I'm not going to name him/her in this story because I'm not slamming them, personally - they're just repeating what's done all over society, all the time). I've been really excited in anticipation of their new book. They posted a snippet of it recently. The heroine is working for a detective agency...exposing benefits cheats, people who claim to have a disability just so they can laze around enjoying the money from their companies. She's always successful in exposing them. Always. And this is the point: in every case, she exposes their fraud, because it's always fraud.
I actually felt as if I'd been punched when I read that snippet, from one of my favorite authors. It literally felt like a physical blow. It was so bad - the instinctive shame I felt, reading that, knowing that that was what they thought of people like me - was so intense, I actually had to go emotionally numb. And the first response of shame is always: quick, cover up! Don't let other people know! So I even left a nice comment saying how great the snippet was, how I couldn't wait to read the rest of the book.
Guess what? It was a good snippet, in that it was well-written and fast-paced. But I felt like throwing up afterward, especially after the hypocrisy of my own approving comment, which felt like punching myself again. There's been time for the numbness and shame to wear off, revealing the truth: I will never buy or read that book. And I've just lost a favorite author.
But at the same time, I have a hard time blaming them, personally, because they're just thoughtlessly repeating a social message that we get ALL THE TIME, whether it's in the posters hung around the UK in public places saying "Benefits cheats, WE'RE WATCHING YOU!" or in the careless references to those cheats in all sorts of mysteries and dramas as being the NORM, the only reason we tend to see in books and movies for people to ever go on benefits.
The problem is, that's not the truth. It isn't the truth for me. It isn't for any of the other people I know who've had a disability forced on them by sheer bad luck, then had to try to live with it in a society that minimizes and doubts any "excuse" not to go out and Get A Job. Statistically, the overwhelming majority of people who go on disability benefit are NOT cheaters...but when those are the only people we ever hear about in a larger cultural level, it's no wonder people start to assume that they must be the majority in real life, too.
So here's my personal truth: I had a dayjob that I liked, that challenged me in all the right ways, when I got CFS. Of course I dreamed about being a fulltime fiction writer, but I felt great about the fact that I was earning a good living doing what I was good at while at the same time writing 1,000 words a day on my lunch breaks. And that's what I would still be doing if I hadn't mysteriously gotten sick. I kept expecting a diagnosis, any day now, that would end up with me getting medicine and being cured. I never got that diagnosis, and I got more and more desperate and scared as the months went on with me continually unable to go back to work, and my employers getting more and more openly angry and suspicious that I was just making it all up.
Was this fun for me? Was I enjoying the chance to laze around enjoying my sick pay? Are you insane???
Finally the diagnosis came: guess what? There is no medicine for CFS. No cure. Just: live with it, live with the fact you can't get a day job ever again unless you have a miraculous remission.
I haven't had one. I had to quit my job (about a week before they were set to fire me for being sick too long). From now on for the rest of my life, unless a cure for CFS is invented, no matter how scared we might ever get about money (because although I was very lucky with my book advances, that was three years ago, and fiction writing is not a reliable, steady source of income), I cannot go out and get a dayjob outside the house, despite all my qualifications and abilities. I can't even take any work-from-home jobs that would require more than a few hours of work a day, because CFS affects mental energy, too.
Trust me, I do not feel happy about being helpless. NO ONE feels happy about losing their independence. If I ever get disability benefit (which is, by the way, incredibly difficult to get, even for people who are really badly disabled), it'll be much less than minimum wage. I would never in a million years choose this.
And the statistical truth is that the overwhelming majority of people who get disability benefit do it because they need it, not because they're trying to get away with something.
So it would be nice if we got to see that side of the story, too, every now and then.
There's a blog entry I've been wanting - or, really, needing - to write for a while, but I've been resisting it. The problem is, this blog is my safe space, the place I come to hang out with my friends and be the person I identify as, the one who's all about books and magic and highwaymen and romance. It's not about the body I've been stuck in ever since I got CFS, the one that sometimes won't even stand up or walk, so I have to crawl to get from room to room.
I don't want to talk about that part of my life here, because it sucks, genuinely, and it's not what I want to focus on. I am not my disability. But the problem with not talking about it is that there are other people talking about it all the time. Right now benefits programs are being slashed and burned in the UK, with no major protests against it. And everyone knows the biggest reason not to talk about having a disability: shame. Who wants to identify as one of those people, who are probably all cheats anyway? Because we all know "most" people on benefits are cheats. "Most" people who claim not to be able to work are just lazy.
And that social message gets hammered in all the time, in so many ways. Most of the time, I wince but ignore it. Sometimes it hits me like a personal slap in the face. That's what happened recently.
There's an author whose work I've always loved (and I'm not going to name him/her in this story because I'm not slamming them, personally - they're just repeating what's done all over society, all the time). I've been really excited in anticipation of their new book. They posted a snippet of it recently. The heroine is working for a detective agency...exposing benefits cheats, people who claim to have a disability just so they can laze around enjoying the money from their companies. She's always successful in exposing them. Always. And this is the point: in every case, she exposes their fraud, because it's always fraud.
I actually felt as if I'd been punched when I read that snippet, from one of my favorite authors. It literally felt like a physical blow. It was so bad - the instinctive shame I felt, reading that, knowing that that was what they thought of people like me - was so intense, I actually had to go emotionally numb. And the first response of shame is always: quick, cover up! Don't let other people know! So I even left a nice comment saying how great the snippet was, how I couldn't wait to read the rest of the book.
Guess what? It was a good snippet, in that it was well-written and fast-paced. But I felt like throwing up afterward, especially after the hypocrisy of my own approving comment, which felt like punching myself again. There's been time for the numbness and shame to wear off, revealing the truth: I will never buy or read that book. And I've just lost a favorite author.
But at the same time, I have a hard time blaming them, personally, because they're just thoughtlessly repeating a social message that we get ALL THE TIME, whether it's in the posters hung around the UK in public places saying "Benefits cheats, WE'RE WATCHING YOU!" or in the careless references to those cheats in all sorts of mysteries and dramas as being the NORM, the only reason we tend to see in books and movies for people to ever go on benefits.
The problem is, that's not the truth. It isn't the truth for me. It isn't for any of the other people I know who've had a disability forced on them by sheer bad luck, then had to try to live with it in a society that minimizes and doubts any "excuse" not to go out and Get A Job. Statistically, the overwhelming majority of people who go on disability benefit are NOT cheaters...but when those are the only people we ever hear about in a larger cultural level, it's no wonder people start to assume that they must be the majority in real life, too.
So here's my personal truth: I had a dayjob that I liked, that challenged me in all the right ways, when I got CFS. Of course I dreamed about being a fulltime fiction writer, but I felt great about the fact that I was earning a good living doing what I was good at while at the same time writing 1,000 words a day on my lunch breaks. And that's what I would still be doing if I hadn't mysteriously gotten sick. I kept expecting a diagnosis, any day now, that would end up with me getting medicine and being cured. I never got that diagnosis, and I got more and more desperate and scared as the months went on with me continually unable to go back to work, and my employers getting more and more openly angry and suspicious that I was just making it all up.
Was this fun for me? Was I enjoying the chance to laze around enjoying my sick pay? Are you insane???
Finally the diagnosis came: guess what? There is no medicine for CFS. No cure. Just: live with it, live with the fact you can't get a day job ever again unless you have a miraculous remission.
I haven't had one. I had to quit my job (about a week before they were set to fire me for being sick too long). From now on for the rest of my life, unless a cure for CFS is invented, no matter how scared we might ever get about money (because although I was very lucky with my book advances, that was three years ago, and fiction writing is not a reliable, steady source of income), I cannot go out and get a dayjob outside the house, despite all my qualifications and abilities. I can't even take any work-from-home jobs that would require more than a few hours of work a day, because CFS affects mental energy, too.
Trust me, I do not feel happy about being helpless. NO ONE feels happy about losing their independence. If I ever get disability benefit (which is, by the way, incredibly difficult to get, even for people who are really badly disabled), it'll be much less than minimum wage. I would never in a million years choose this.
And the statistical truth is that the overwhelming majority of people who get disability benefit do it because they need it, not because they're trying to get away with something.
So it would be nice if we got to see that side of the story, too, every now and then.