baratron: (introspection)
[personal profile] baratron
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.

Date: 2007-08-30 12:58 am (UTC)
From: [identity profile] otterylexa.livejournal.com
Good rant.
*hugs*

Date: 2007-08-30 03:46 am (UTC)
From: [identity profile] quiet000001.livejournal.com
I may print this rant out and use it to beat people at college with if it proves necessary. (I haven't had a meeting with the disability coordinator person yet.)

Meanwhile, I am attempting to figure out how to address the topic of my PTSD with my professors yet. In general class life, it's not going to be an issue. BUT, my classes also involve watching films. In class. I have no control over what they are, and the assignments are based on them. The problem with films is that some of them, and some which are generally considered very good, are also either medically-based or quite realistically gorey. Both of which are problematic for me and generally triggers.

(I HAVE watched stuff with gore in it successfully, but I do it by a) hiding behind my hand and b) not paying close attention. I kind of detatch myself from the film and Don't See it, you know? B is not so much an option when you're watching the film so you can talk intelligently about it.)

I have no idea if I should bring it up, or how. I don't want to seem like I'm trying to control the movies they show, you know?

my 5 minute advice for what it's worth

Date: 2007-08-30 04:46 pm (UTC)
From: [identity profile] baratron.livejournal.com
Ugh. Yeah, I understand :/

I think you should go to each professor, or email them, and explain the situation. It doesn't have to be a very long or complicated email, just "I saw my husband die in a fairly gory way and as a result get anxious/panicky if I'm surprised by medical details or gore in a film. I would appreciate warning if we're going to watch a medical-related or bloody movie in class, as I may need to look away from these parts of the action. I would also appreciate it if I could avoid assignments that would require me to watch these parts of the movie in detail, instead focusing on less personally-upsetting features of the drama." Something like that. You might not want to "ask to avoid" certain types of assignment, instead re-wording that part to focus on the type of assignment you'd like to do - but then again, you might consider that overly restrictive? Because there are violent movies that wouldn't upset you too much (non-gorey martial arts?) that you could still analyse from the point of view of the shock to the audience.

Maybe dump my 5 minute suggestion email into a post in your lj and get your other friends to poke at it?

Date: 2007-08-30 11:46 am (UTC)
From: [identity profile] syllopsium.livejournal.com
Yes, and no. On the one hand - yes, you're absolutely spot on about making a workplace accessible for disabled people.

On the other hand: it's not personal. Put an average person in a group of people that has significantly higher than average abilities in given areas and exactly the same situation applies.

In particular it is absolutely untrue that you're expected to give 95-100% only during the hours you work. Who cares if you don't have the energy with your sweetie? Work mostly doesn't care regardless of whether you're able bodied or disabled - it only cares that you're able to complete your work day. If they can't cope long term even 'able bodied' people get different jobs.

Even the 'average person' is constrained by what they'd like to do in order to maintain their energy and stress levels, stay sober and awake with a clear head. For certain jobs there's also a full time public image that's projected.

There's a number of things the able bodied are expected to deal with - such as a year+ of sleep deprivation ( otherwise known as 'having children'), relationship/family breakups, death in the family or moving house. The trick in all cases is to get work to work for you, rather than the other way round.

A decent workplace will look after your health - not because they care about you as such, but because hiring new people is expensive. In most cases however, it will still be down to the individual to shout about requirements, because people tend to simplify life to cope with the least number of tasks, and fixing something that appears to be working is not a high priority.

Date: 2007-08-30 04:36 pm (UTC)
From: [identity profile] baratron.livejournal.com
Oh, I never thought it was personal. The person concerned pointed out that exactly the same situation would arise at their workplace if, for example, someone needed an ergonomic keyboard rather than a standard one. It's the incompetence and faffage in the large corporation that bothers me.

I think what "work" cares about depends on where you work and how competent your manager is. I think if you said to your average manager "so, how would you feel if all you could do was go to work?", most of them would be horrified. Of course, there are insane workaholic managers who spend every hour of the day at work, but that's another issue.

As [livejournal.com profile] hoopycat said to me on irc last night, the most interesting thing about the spoon theory is the idea that some people genuinely don't ever reach their energy limit. I do know a lot of people who have enough energy for everything they need or want to do on a regular basis, and simply can't deal with the need to "budget" it. When my partner Richard has a cold, he gets very depressed because he feels too tired and achy to do most things he wants to do, and I tell him that's like living in my body every day. Richard is a person with a large amount of natural empathy, and he spends a lot of time around me - but even then, it's only being ill himself that makes him realise what it's like to have a chronic fatigue condition.

Date: 2007-08-30 01:03 pm (UTC)
From: [identity profile] thekumquat.livejournal.com
Hm, I thought my rant yesterday was my-eyes-only...

All I can do is agree with you. I also would like the 4-day week or 30-hour week to become a lot more standard, because that would help a heck of a lot of people get into suitable work.

Profile

baratron: (Default)
baratron

March 2022

S M T W T F S
  12345
6789101112
1314151617 1819
20212223242526
2728293031  

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Jul. 5th, 2025 08:47 pm
Powered by Dreamwidth Studios