Here’s one of those nasty secrets about having a disability that you don’t really understand until you royally screw it up: balancing a career and a disability is very, very hard.
It’s something I’ve struggled with personally, and something I’ve watched friends and acquaintances struggle with. Part of the trouble is that the world outside tends to have an all-or-nothing perspective on work: either you can or you can’t work full time, you can or you can’t ‘hack it’, you’re part of the workforce or you’re some bum on disability. It’s a pretty damn unflattering look at us, very ableist, and something that puts a great many people in the netherworld of not working and not being on disability.
Here’s the truth: a lot of us who are disabled can’t work a traditional, in the office, 40+ hour work-week. Some of us could do the hours no problem if we could work some portion of them from home. Some of us need some kind of accomodation, for example being able to lay down or recline comfortably, and then we’d be able to work those hours. Some of us can’t work that many hours. Some of us could work the hours if we had flex-time scheduling and could work when our bodies let us (doubly so if we had that flex-time scheduling from home).
Where does that put us? For many of us, it puts us out of work. Your average employer is deeply ableist and doesn’t believe that a person who needs accomodations for their disability will be able to contribute adequately. They don’t want to make accomodations for us, because they have this odd idea that if they change anything for me, they’ll have to change it for every Tom, Dick and Harry who ask for it. They want me to prove that I’m good enough, in a trial where I’ll be under scrutiny every minute and where my mistakes will be weighed more heavily than an able-bodied person’s. Perhaps hardest of all, often you have to ‘prove yourself’ before you can get your accomodation – unfair and illegal, but something we see distressingly often. Or at least, it’s illegal if you can get a doctor to say you need the accomodation – a whole other problem that I’ll address in a later edition.
Sometimes our accomodations are small. Having our hours scheduled in a particular manner. Not having work and training on the same day. Not being stationed in a smoking area. Written rather than verbal instructions. Space to do medication injections. A binder shoved under our feet to prevent low back strain.
Find me a law firm that will give me a recliner for my office chair, with a wireless mouse/keyboard combo and a screen that can be moved into position, and you’ll have one shocked Kali. You’ll also have a woman who can work. A woman with a damn good instinct for trial practice, according to a trial professor, and a heap of passion for the kind of work she wants to do. Yeah, I’ll still need some flex-time – it’s physically impossible for me to make it in to an office before 9:00 and that’s just how it is. But having that kind of chance…well, it’s something we don’t get very often.
Instead, we end up in positions like my friend B. Not long after B started working for her current employer, she was told that it wouldn’t be a problem that she needed to work from home sometimes, not to mention occasionally taking off for doctor’s visits, which she’d make up for later. The face her employer initially showed her was a disability friendly company that would work with her. Instead, B is finding that when she says she’s going to work from home, her boss harasses her. She catches hell about missing time at work, even though she takes home piles of work on the weekends. B is so run around and overworked that she is barely able to take care of herself, and she’s really running herself into the ground trying to keep up. Because of this non-disability-friendly treatment, she has had to quit for her health. Her boss justifies it by pointing out that they’re a small company and don’t have people to take up the slack, but the thing is that they’ve more or less broken promises to her. There’s some question about whether B could work fulltime even with accomodations; I won’t pretend like it’s just the way her office treats her. And the job is a more-than-fulltime job for an AB. The thing is this – she doesn’t really get a chance because her employer plays ball on paper but makes her life hard in reality.
It’s not always bad. Some employers really do work with us. My friend Miss Waxie, who works for a university, gets time off for her doctor’s appointments, and is allowed to borrow an office when she needs to inject her medications. She also has a boss who watches for fatigue and tells her to take off. Her co-workers give her written notes instead of verbal requests, because her memory requires it. (You can find Ms Waxie at http://www.acomiclifeindeed.wordpress.com)
Likewise, my friend M, who works in travel, has been able to negotiate work-arounds for her, though she had to prove herself first. Once she had ‘proven’ herself to her superiors, she was able to make sure she wasn’t scheduled for training and work on the same day. She keeps more at her desk than most of her co-workers, though she does get a little flack about needing to keep her desk clean. She does things in the way that is most efficient, even if it isn’t quite the same way policy or the rest of the office does it.
But negotiated arrangements aren’t always safe. G has asthma. She worked as a host in a restaurant at a resort. There were 2 positions for hosts inside the restaurant, and one just outside. The restaurant was non-smoking, but right outside of the restaurant was an open-air bar, where people did quite a bit of smoking. During the winter months, it was okay, because the prevailing winds blew the smoke away. But as it warmed up, the smoke got blown in, and G started having asthma attacks. She went to the manager, who said that G would no longer rotate to the outside posts, much to the annoyance of the other hosts. The other hosts harassed her in front of a supervisor, who did nothing about it and in fact thought they were justified in harassing her. A few months down the road, the other hosts hounded the manager into forcing her outside. G ended up having to quit the job. She probably could have fought the resort, but since the problem hinged on the behavior of a manager, she had really lost faith in her employer caring about her.
Here’s the other thing – it’s not always about our jobs working with us (or not), it’s also about us working with ourselves. My first year of law school, I was determined to go to school full time. I wanted to carry a full course load like everyone else, making no accomodation for myself! I did nothing but go to school and go home, eat and sleep. I was miserable, with a brand spanking new disability I hadn’t figured out yet and a load of classmates and professors who didn’t understand. I’d always carried a full or overload course load in my academic career, so I couldn’t admit at first that I could no longer do that. In the end, it took one professor failing me for missing too many classes and the dean of students kindly but firmly encouraging me to drop down to a part-time load to get me to see reason. And at that, it was a very traumatized, upset ‘seeing reason’. I don’t know what I would have done if they hadn’t stepped in; no, that’s not true, I know what I would have done – I would have kept driving myself into the ground harder and harder until I broke.
This entry is brought to you by something that happened recently – I made a good career choice, but a foolish health choice. I got a part-time job working for a judge this summer. I’ve worked for her in the past, so I know her office is pretty laid back. I also know I can tell her I’m working 3 days a week, and won’t be pushed past that. Now, for my physical and mental health, I know I should have taken the summer off. I’ve been plagued by severe migraines and wierd maybe-they-were-seizures. I’ve had dislocation problems, and probably need to get the majority of my braces replaced. I’ve been learning to live with a service dog, which is actually a lot of work (mentally and physically). Taking the time off would have been a much wiser choice. But for my career health, it’s much better that I not take the summer off. The legal world does not look kindly on summers where you neither take classes nor work. So…I work. For better or for worse. At least I know, up front, what I’m heading into.