Comments on: I can’t count on anybody to understand. (Blogging Against Disablism Day 2010)

By: chava

chava — Sun, 20 Jun 2010 01:49:22 +0000

I enjoy the “why don’t you try acupuncture” type chats. Those are always fun. Especially when you decide to try and explain why no, no, you do not have enough spoons–but this is not OK, because you must try! everything!

Good post. I have gone years without people in my life knowing about my headaches to any real extent. Really, it isn’t worth the bother of dealing with them. Started being more open recently…mixed bag.

By: ekey3cat

ekey3cat — Sun, 30 May 2010 21:02:02 +0000

I can’t tell you how much I identify with this. My mother and I both have disabilities, and it’s been a ridiculously epic battle to get the most modest accommodations at work and school. Because I have agoraphobia and panic disorder, I asked my college if they could ensure that I was in a dorm on campus so that I’d feel more secure. Now, in my mind it’s still pretty impressive that I actually go to college full-time, given the fact that there have been times in my life when I could barely leave my room. I also don’t think it was asking too much of the school to accommodate me in such a way – 90% of the dorms are on the main campus. Yet I still received a very hostile phone call from the school psychologist, demanding to know why I didn’t have my anxiety under control. What? At that point I had severe panic disorder and yet had maintained both a strong social life and a 4.0 GPA all throughout high school and college. All I was asking was that the school take a small step to make things easier for me – I was already doing most of the work! Eventually, the school acquiesced, but not after their psychologist had called both me and my mother multiple times, telling us that I should increase my dosage of medication, that I should see my therapist more often, etc. It was a nightmare.

My mother, on the other hand, has a sensitivity to certain chemicals that is aggravated by auto-immune problems. She developed pleuritic pneumonia from the cart of cleaning agents that was stored in her office. Her doctor wrote to her employer saying that she needed to have a desk far away from the cleaning agents. The employer resisted, insisting that “no one could be allergic to these cleaning products.” It was another epic battle that ended not when the employer moved my mother’s desk (which would have been easy) but when the office switched to a different cleaning company – for unrelated reasons.

By: Jan S

Jan S — Sat, 08 May 2010 19:28:50 +0000

Your work situation angers me greatly. No one should have to go through what you’ve been through already with health problems, not to mention stupid power-hungry unaware clod-headed people in positions to do or not do things to make others happy or miserable…..argh!
My sister, who has MS, had to work for such a person for *years* before the woman finally retired. My sister is much happier now.

I never “got” why that wall you describe exists, before reading this post. Now I do. I also have “invisible” disabilities (not severe enoughfor SSDI or anyting else, yet), and now I see that I’d put up a wall of my own for many years. Tnank you for writing this. I think my therapist and I will have an interesting conversation next week. Peace and prayers for a better life to you.

By: Scrumptious

Scrumptious — Mon, 03 May 2010 22:27:31 +0000

Ugh, what a miserable situation. I’m so sorry to hear what you’re going through.

I really appreciate how beautifully and poignantly you articulated the non-choice “choice” between revealing or concealing invisible disabilities. I know that devil’s bargain well, and it was very moving to hear it put into words so well.

By: andrea

andrea — Mon, 03 May 2010 03:09:20 +0000

I too get migraines. I remember being in a lab, happily working on some documentation by the light of a modest (incandescent) desk lamp, when one of the professors came into the room, flicked on all the fluorescent lights, and commented to me as he walked through to his office, “You don’t want to be sitting here in the dark!”

The egocentrism can be amazing! Or, horrifying. Or, leave one aghast and sputtering at the sheer WhatTheFuckitude of it all.

I like Andrea S’s idea of the head-whacking machine!

By: K

Mon, 03 May 2010 02:45:17 +0000

Some of your co workers sound so mean. Were they doing that on purpose? A few years ago I worked for an employer I’m no longer with. I learned a lot, but I’m glad to be working where I am now. My co workers & I all get along pretty well & sometimes maintenance is a little slow getting to repairs we need, but they’ve been good about making adjustments when someone asks. Like I think they would be fine with adjusting the light intensity lower if I needed it.

With the old employer it was a harder. Resources were more limited there & I didn’t have a chair I could adjust to my height & it hurt to sit on for a long time. It made my back hurt but worse, I think, is that I was having some kind of muscular tension flare or problem or something I don’t even know what in my pelvis. So sitting down for a long time would hurt. I brought in a pillow to work with me to sit on & I had to carry it with me, in public, even when we were going out to lunch… I almost left it at a restaurant once. It was embarrassing.
This boss was not so willing to change things in the office to make it more comfortable for any of the employees.
At least now I can move my chair up & down & it has some padding. I don’t need the pillow now but I still leave it in my trunk just in case it happens again.

By: seahorse

seahorse — Sun, 02 May 2010 23:43:34 +0000

Agh, just appalling. I admit that the tiny part of me that may be able to work again some day is obliterated by the fear that I’ll end up in a similar boat because my disability is invisible, my waves of pain won’t be tolerated, my needs won’t be understood. So I don’t work, and I too have built a pretty high wall. It stops anyone getting in. Which is how I like it too.

By: Andrea S.

Andrea S. — Sun, 02 May 2010 22:04:03 +0000

A friend of mine and I agreed just the other week that what we need is a head-whacking machine. Then, any time we encounter someone who Just Won’t Get It about disability or disablism, then we would simply turn on the head-whacking machine, point it at the whackee, then the machine would go up to them and whack them on the head until they see reason. Or if they still fail to see reason then at least we’d get a little cathartic relief from watching them get whacked.

I think that conversation started when we were talking for some reason about people who claim they don’t need to accommodate wheelchair users because they never see any wheelchair users in their (completely non-accessible) building. And other similar instances of major Logic Fail. But it sounds like you could use a head-whacking machine at the office. Either it would make them wake up and get it. Or if it doesn’t, then at least they’ll be left with head pain roughly equivalent to your migraines. They do say misery likes company, yes?

Sorry, I just have a really warped sense of humor sometimes.