01 July, 2012

to him it was a joy until he ran out into the warm air

About a month ago my mom was here and she said something about wondering if she and my dad had been too hard on me when I was growing up. We were talking about our respective MH stuff and I had mentioned I was probably more likely to kill myself than be unemployed.

If I wasn't like that though I would probably be unemployed. Do I ever want to quit my job. Not for all the ethical reasons. Just the working 3 12-hour shifts in a row with a 4-hour commute and 5 or 6 hours of sleep in between and eating one or two real meals in the whole stretch. I'm very able bodied but I still hate my body for its soreness and slowness and tiredness, my headaches, and I hate my brain for starting off slow even with enough sleep.

Sometimes I have had gaps in my memory a little bit and Clayton says if you don't sleep this will happen and you won't even know.

One of my best friends, who I know doesn't read this blog anymore so I can say this, is someone who I've consistently encouraged and cheerleaded in getting a job. Now they have a job and they are miserable. They live in fear of losing their job and they can't cope with that fear and working a normal amount of time makes them exhausted.

I'm tired too but what I am learning about myself is I can just keep going and going, everything just goes underneath something else. When I think about myself a year ago being all depressed about school and sleeping ten hours a day and eating I want to punch myself in the face. I'd give anything to be sleeping, I'd give anything to be someone who complains about having had less than eight hours of sleep. I'd give anything to be able to sleep without waking up scared. During the weekend I live from cigarette to cigarette and for Athena smiles and that's about it.

You know how I tend to put disabled people into two categories. Supercrips and not. All my friends hate it. It usually makes them feel bad no matter which one they are.

We're not so different, you and I. We all have no choices. If I wasn't more likely to kill myself than be unemployed, I just would be unemployed, and that would be a different thing to live through.

We're always going to be valued for our ability to work as much as an imaginary non-disabled person who even people without disabilities are killing themselves trying to become, especially poor people. Employment, or even just volunteer work (which sounds inspiring but doesn't help you get food or a place to live) is set up as this glamorous and touchy-feely goal for disabled people. It will give us a feeling of purpose.

I'm here to tell you there is no dignity in work. Work does not give life value. Disabled people who don't work don't have wasted lives--just very scary, miserable ones, because the world wants it that way.


  1. I totally get what you mean about if you weren't the type of person who'd kill yourself before you became unemployed, then you'd just be unemployed. I think I've often felt that way, but never quite put it into those words.

  2. I'm kind of the same way. In fact, a few years back I was struggling to keep up with work and everything else, and I finally went to be evaluated for ADHD (long before autism was on my radar) and get meds because I figured the alternative was eventually going to involve losing jobs, becoming unable to get a new job, and having to kill myself for the insurance money so I wouldn't let my wife and kids down. So taking ADHD meds would be less dangerous to me in the long run than not doing anything.

    Happily I'm still working. I guess I check in enough good code and manage to not piss anyone off too much, even though I can't stay constantly on task the whole time I'm there because my mind keeps wandering. I do get caught by surprise in layoffs occasionally because I absolutely cannot see "the writing on the wall" when it's coming.

    But always in the back of my head is the question "how long can I keep going like this?" I haven't reached my limit yet, but then again I'm going to be slowly deteriorating from here on out which means eventually I'm going to hit the wall.

  3. Hopefully I'll keep going until long after all the kids are out on their own.