Disability and Work

There's a thread spinning out on my autism listserv about autism and full-time work. This is an issue I've broached before on this blog, and it's one any parent of a disabled child (or child of a disabled parent, for that matter) has confronted. How do you adequately care for your loved one and be a good employee? And if you can't be a "good" employee (there might be different definitions of "good" out there) then how do you work it out with your boss?

Being a "good" employee, in many bosses' minds, means being at the office at the same time every morning and staying in your seat until five or six or seven o'clock. It means volunteering to stay late during crunch times and basically making every sacrifice for the good of the company. Businesses are all about the bottom line, and if you are not perceived as contributing to the accumulation of profit then you are likely to lose your job.

If your child has medical appointments in the middle of the day more often than, oh, once every eight months, you are likely to lose your job.

If you get called by your child's school and have to pick her/him up early because s/he is breaking down, and this happens more than, oh, once every eight months, you are likely to lose your job.

If you are a bit distracted because your life is going down the toilet, because disability reigns in your household and is a despot, you are likely to lose your job.

And if you don't lose your job, you are likely to be demoted. Or never promoted. And you might earn less than your co-workers, too.

Sometimes it's easier to just not work. But the cost of not working is astronomical over one's lifetime -- and of course, for many families this is simply not an option. I would venture to say that most disability parents are either struggling to make it at work and successfully do their second (or third) full-time job at home, or one adult in the family is not working and that family is broke.

We used to be a family of the former sort. I was teaching college English full time and taking care of a multiply disabled child, and I was doing neither very well. Then I reached my breaking point and dropped down to one class a semester. Boy, have we been feeling the pinch. And tonight I heard that the one class I was scheduled to teach next semester, in an unpopular 8 a.m. time slot, has been canceled due to low enrollment.

So here we are, desperately running the numbers, figuring what further cuts we can make to our already spartan lifestyle.

But I think I'd rather not work and give up even more than we already have, than be worked half to death and always feel like I'm not really there for my kids. Lars mentioned to Benjy this morning that I might have a lot more time for him soon. And you know what he did? He cheered. So now I'm happy.