There are a great many topics we consider taboo in the workplace – religion, politics, sex (usually) – and disability definitely has to go on that list.
Because I have POTS, I’m at a risk for fainting or needing to do things that look odd like suddenly sitting or lying on the floor. I thought it was only fair to warn my coworkers.
First I warned the legal secretary in our office, since I know her best. She’s a lovely person, she really is, but it was clear she was uncomfortable. I mentioned that there’s a risk of me fainting in the heat, and she started asking if it might be blood pressure issues, that sort of thing, but in the sort of tone that acknowledged that this was Not Spoken Of At Work. I told her that on the rare occasions when I faint, I generally come around within a minute or two, and not to worry or call for help unless I was down for more than five minutes. I managed to ease her worries by pointing out that I haven’t had a full faint in 2 years, and that the most likely thing to happen was that I’d get woozy and dizzy, and sit back down hard in my chair when I tried to stand. She eventually got comfortable enough to make a joke about keeping the air conditioner blasting in the room where I work.
Today, I told my supervisor, the judge’s clerk. I told him that it was possible that I’d have to do something odd like sit or lay down on the floor, and he gave me this look like I’d just dropped a frog in his lap. I told him that it was a blood pressure problem and it got worse in the heat, so the current weather was very hard on me. He continued looking like there was a frog squirming on his lap, and said, “Er, okay.”
Now, I was warning my coworkers so they wouldn’t panic or freak out if I did happen to faint or collapse, or sit on the floor for no apparent reason. I hadn’t expected them to be so very uncomfortable with discussing my disability, in ways it might affect them, but boy were they!
Because we treat disability as a very taboo issue, when a person chooses to speak about it, we tend to react as if they had just stripped down to their underwear and started dancing around in the middle of the office. While disability is indeed a very personal issue, and one that I think shouldn’t be broached without a firm relationship with the person who has the disability, it’s disconcerting to realize how much other people don’t want to deal with it.
There are reasons, of course. If you talk to a healthy looking young person about their disability, you have to admit that there is theoretically nothing to stop anyone – including you – from becoming disabled. You have to acknowledge that disability makes their abilities different, and many people have to struggle over the idea of whether that changes their value as people. You are given an introduction to a different perspective on the world, especially if the person with a disability chooses to talk about some of the ways the society’s treatment of us sucks. It’s a pretty big paradigm shift, especially if you can wrap your head around the idea that being human, and thus of value, is not dependant on having certain abilities – it is an innate quality in all of us.
But part of getting to that point is learning to listen to people talking about disability without getting the creeping feeling that somehow talking and listening to/about disability is wrong. You have to get over the idea that disability should be hidden, shameful, embarassing, and degrading.
It’s a lot to ask a person to do. Any time you push someone to take a closer look at their privileges and their prejudices, it’s a very uncomfortable journey for them, because they have to admit they HAVE privileges and prejudices. And let’s face it, none of us wants to admit that we have accepted and shaped our world view around bigoted notions.
So I can understand why my coworkers are so uncomfortable when I mention that my disability might have certain affects on me while I’m in the office. But that doesn’t make it any more comfortable for me.
[...] Disability makes people uncomfortable « Brilliant Mind Broken Body Comments [...]
I’ve noticed that discussing disabilities is uncomfortable for people, but I must admit that I don’t understand nearly as well as you seem to do. To me, it’s a matter of practicality.
One example that comes readily to mind is when I’m taking my son through the checkout and the cashier tries to engage him in conversation. When he doesn’t respond, she’ll repeat herself as if he didn’t hear her. So, I say quite simply, “My son is autistic and non-verbal. He won’t answer you.” The cashier looks at me as if I’ve said something wrong. I’ve broken some kind of social code. Yet, it makes my son uncomfortable for people to ask him questions or engage him in conversations when they don’t give him a means to respond.
I would expect co-workers to be better prepared for such a conversation, but again I don’t understand why such practical information is taboo in the first place.
Practicality is exactly why I addressed it with my coworkers – I need them to not freak out too much if I faint!
I think they should be more prepared for that sort of conversation, too, but as I wrote in my post, I can understand why they aren’t. I don’t think it’s socially and societally a good thing that people respond that way, but to change that, we’ll have to put in a LOT of work.
The work is worth doing. People with disabilities need to be comfortable talking about their needs in the work environment; and their co-workers and employers need to be comfortable hearing about it and discussing ways to accommodate people with disabilities.
In a society like ours their discomfort is a luxury we just cannot afford.
Indeed. Perhaps if we talk often enough about our disabilities, we’ll slowly get over that discomfort. Maybe. I hope.
You forgot to mention fear of contagion. Not only is the idea that “I am invincible and could not become disabled myself” a barrier, but the fear that whatever you “have” that causes your problems could rub off on them…
I would probably limit what I tell people at work to a need-to-know basis. You haven’t fainted in two years. You know what to do if you feel light-headed. Most likely you can cover … so if you do have to sit on the floor, just tell people you felt faint and perhaps you shouldn’t have skipped breakfast, etc.
You’re going to be at this job what, the rest of the summer? These people don’t need-to-know much about you.
Since you’ve already brought it up, no need to do anything different. But in future, I would only discuss personal, medical, disability things if they absolutely need-to-know, and there are very few occasions when they would. Even when requesting a workplace accommodation, you don’t need to tell your employer what your medical issue is, only what accommodation your doctor or rehab counselor says you require.
It seems lonely – but you don’t enter a profession expecting emotional support. That’s what friends, (hopefully) relatives, and support groups are for.
Good luck, Kali.
I brought it up because my POTS gets worse every summer, and this summer it’s been bad enough that I’ve had some very close misses with fainting. In general, I totally agree with you about need-to-know basis. But I looked at the situation and realized there was a reasonable chance of me fainting, so I thought it was better to warn them in advance than to wake up to an ambulance.
I prefer not to cover, when I think I can. I’d rather people know that I’m woozy because of something mostly out of my control than that they think that it’s because I haven’t been eating enough. I also think it’s safer this way, because when the POTS is acting up, I’m often not really coherent enough to explain what’s going on. I’m holding on to my consciousness by tooth and nail, and trying to reassure people that it’s alright while that’s happening takes my attention away from not fainting.
And you’re right, I completely forgot the irrational fear of contagion. Ah yes, my genetic disorder just might rub off on some poor unsuspecting person near me! That one really annoys me, because it is SO irrational. Especially when I’ve told them that it’s genetic. I think that my coworkers are intelligent enough that they didn’t succumb to that particular fallacy, but it’s kind of hard to know, isn’t it?
~Kali
I think the hardest issue is finding the balance of comfort. For example, I don’t want people freaking out when I black out from the heat (which is a regular occurrence for me), however, I also don’t want people to be so comfortable discussing impairment that they interrupt my life to ask about why I use a wheelchair. Sadly people seem to get it the wrong way around and have no problems being nosy, but get really uncomfortable when I warn them the other way about something they might actually want to know.
Exactly! I do hate the way they have that balance the wrong way around. I suspect it’s an issue of privilege/control: when I initiate the conversation to talk about some facet of my disability that I need to address with them, I have control of the conversation and the specifics we cover, not them. In doing that, I’m violating that privilege standard that says they should only know what they want to know about my disability.
Kali said: “Perhaps if we talk often enough about our disabilities, we’ll slowly get over that discomfort. Maybe. I hope.”
I hope so, too. I suspect some direct (verbal) confrontation will be necessary, but I hope not too much.
Thus far, I’m thinking of it as desensitization treatment. People who I think could become understanding folks, I let in now and again.
Of course, I’ve had it horribly backfire. The majority of my 1L class decided I was an excuse instead of a person because I told the truth when people asked how I felt or why I missed things. My mistake, I thought they actually wanted to know.
[...] “You have to acknowledge that disability makes their abilities different, and many people have to struggle over the idea of whether that changes their value as people.” (See Disability Makes People Uncomfortable”). [...]