helen-louise (baratron) wrote,
helen-louise
baratron

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a rant about so-called "accessible" workplaces

I'm in a bad mood. A friend of mine is having disability "issues" at work. Of course, I can't talk about the details in my own journal, let alone in an unprotected entry - but I want this to be public so other people can see it. So I won't say anything specific, but I do want to rant generally about so-called "accessible" workplaces.

This is the crux of my rant: Disability accommodation is not pretending the disability doesn't exist!

Yes, it's downright rude for a person to assume that if a person has disability X, they can't do Y. No two people with the same medical diagnosis experience the exact same collection of symptoms. Moreover, a person's ability to adjust to their impairment varies from individual to individual. For example, most of my physical issues bother me not at all, because I have them on a daily basis and I'm used to living in this body by now. But one of the things I find most disabling is having to take (and remember to take, and remember to carry) so many damn meds.

Yes, there are ways to remember whether you've taken a med or not (e.g. put things into pill dispensers, have alarms on your PDA to go off when you need to take something), thank you for that Geek Answer Syndrome. These technological advances don't disguise the fact that I need to take the meds, and that I get ill very quickly if I don't. They don't magically fix the wiring in my brain that says I must be weak if I need to take pills that other people manage perfectly fine without. And no system is infallible - only last month I was preparing to go to another continent, went to the doctor's to get everything I'd need, took the prescription to the pharmacist, carefully counted everything out to go away with me... and somehow a box got left behind, necessitating a Sunday trip to a walk-in clinic and inconvenience to 5 other people. Yes, it was "only" an asthma inhaler - but tell me that isn't disabling!

So while it's rude for a person to assume that a person with disability X can't do Y, it's not rude for them to ask if you have problems doing Y, and if so, what they can do to make it easier? This applies doubly if you are in a place of employment, and the person you're speaking to is specifically employed to deal with accessibility issues! Pretending the disability isn't there doesn't magically give you the ability you're lacking! Reasonable adjustments or equipment might go some way to help, but they don't just appear from nowhere - the company has to order them and pay for them and chase the order up when they don't turn up.

When I communicate my fucking needs before I even apply for a position, and tell the company clearly what they are at the interview, this is information that I expect my employers to use. If I didn't want to talk about the issues, I wouldn't have mentioned them! I've had 31 years of living in my body to get used to how it works or doesn't, and I'd much rather people ask me what adjustments I need than pretend they can't see the difference. It would be ideal if they had some clue based on previous experience, as in "other people we've employed needed us to provide a Widget, would that be useful for you?", so it was a two-way dialogue rather than me sitting there making a list of Demands, but even one-way is better than just ignoring it!

The problem is this: when you have a disability - any kind of disability, no matter how minor - you have a limit to your energy that most "normal" people never encounter in everyday life. I find the spoon theory website one of the most nauseating, Brave Little Cripple stories I've ever read - but the basic idea is sound. A disabled person starts each day with some amount of energy, usually less than a "normal" person, and each task of the day takes some of that energy. And you don't always know from one day to the next how much energy you're going to have, and it's sometimes surprising how much energy a particular task will take. For example, if I'm not in the right frame of mind, I can have a complete meltdown over having to do invoices, and will take 3 hours with lots of tears and tantrums to do a job that at other times takes me 15 minutes max. For a depressed person, something as "simple" as having to open envelopes and file paperwork could be almost impossible due to the mental effort and anxiety involved.

Many people with disabilities aren't able to work in a regular job because of this energy cap. Some of us are able to manage by working fewer hours, or with more flexibility, or with "reasonable adjustments". But this only works if you don't have too much of a variation from one day to the next, and if you're already familiar with the idea of having to conserve "spoons". The way I see it, you're paid for your ability to work while you're at work. You're expected to give 95 or 100% of your effort to work... only during the hours that you're scheduled to be at work. You shouldn't be having 100% of all the energy and motivation you have for the day going into work so you have none left for yourself.

Unfortunately, this is nigh on impossible for normal, healthy people to understand. Most of the time, a healthy person will only ever reach their energy limit in extreme conditions - such as at conventions or music festivals, or when pushing themselves to some physical limit (like climbing Mount Everest). The majority of people who've been to a con or music festival will know only too well what it's like to be on your third night without having had enough sleep or food, and having to make the decision whether to stay up for another party with their friends that they only get to see in person once a year, or collapse in a heap. But having this on a daily basis with ordinary life is... really hard to "get". Especially when it involves things that "normal" people don't think of as difficult, like the ability to cope with a meeting where multiple people start talking at once. If you're apparently hearing well enough to be able to follow the meeting, you must be ok, right? As a person with pretty good hearing, I have trouble imagining how much energy struggling to hear must take for a deaf or hard-of-hearing person, or someone with auditory processing disorder, and I'm used to the idea of spoons! If you look fairly normal, and you're turning up to work each day, and you're mostly getting a normal amount of work done... who cares about the fact the work day then leaves you too wiped out to be able to cook a meal when you get home, let alone have fun with your sweetie/s or kids or whatever? Who can even imagine that as being a problem, if you apparently have enough energy to get through work ok?

Disabilities don't go away because the workplace is "accessible", and workplaces don't become accessible without effort on the part of the employer. Pretending you don't see the disability is much less helpful than asking the disabled person how the workplace can be improved. And saying that you're committed to affirmative action isn't the same as getting off your arse and doing something to improve accessibility. Ultimately, talk is cheap. What a person really needs is the action, not the words.
Tags: disability, rants, spoon management
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