accessibility_fail | Follow up to yesterday.

Follow up to yesterday.

Went back in to Remploy, turned out my adviser had had a word with the guy about the cane-snatching after I left. I told him if it happens again, I'm walking and there will be a serious complaint put in. Cane-snatcher apologised then spent the rest of the afternoon ignoring me and refusing to look at me while in the same room. (Yes, he is in fact a grown man and not a six year old. Allegedly.)

So that was sorted... and then my adviser promptly started lecturing me again on how he was sure I could use a phone if it was "Just a bit". Thing is, I know how "Just a bit" works - you start off with a little, then they go "he's coping fine, see?" and give you more, then they ask how why you're not doing your job. He also doesn't seem to understand that I'm not used to phones and I actually don't respond to them. You know how if someone calls someone else's name, you don't look up or respond because it doesn't apply to you? That's me - I'm just not used to phones, so I tend not to register they're ringing. It's a habit rather than a disability but it's due to my disability. It's not me "being awkward"

I don't get it. I'm hard of hearing, why are they the ones not hearing what I say? Why is it so hard to understand that no, I can't hear/understand you if I'm not looking at you? I've told the adviser a few times - get my attention, then when I'm looking at you, talk. Saying "But I called your name" when I had my back to you working on a computer isn't helpful.

And yes. These are the people whose entire job is to help with disability issues.

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No. Because to have a disability is to be instantly infantalized.

It's weird though, it would seem to me that the easiest/simplest job opportunity for you would be data entry; using your computer skills to input information or correlate data etc. It's not your fault that they likely shipped all those kinds of jobs to other nations.

Exactly! I'm good at that kind of thing - I have a pretty decent typing speed and I don't get bored with that kind of work. But. The nearest suggestion was dictation. As in, listening to someone/a recording of someone talking, and typing it up. Yeah. I just looked at him until he figured why that one was stupid.

I have started asking people "Why do you think I haven't tried that already?" So far, no-one's come up with a good answer. But I'm tired of the "You should be nice, people are only trying to help."

They're only trying to help! It's not their fault they immediately think they're smarter and more educated than the person who's living your life!

(I will confess to asking the "have you tried --" question myself. But only when what I'm going to suggest is truly new/not widely known, is something I've used/experienced/had myself, and I usually phrase it as "you probably already know about this, but --")

Yeah - there's a difference between the whole "You might already know this/have you tried" - where the have you tried is a genuine question, and going "You should try..."

Because it's been my experience that people suggest something, and I go "doesn't work" - because they don't know the full situation, because they don't need to. So then, because I've pointed out their idea doesn't work... they say I'm being negative.

Well in the technical, linguistic sense, yes I am. But saying "That doesn't work with my situation" is, to me, no more negative than saying "I don't have a million pounds." Because I don't. And wishing I did is not going to make it true - neither is saying that I do. But they say I have a negative attitude because I don't fall at their feet worshipping their wonderful idea. (The one I already tried because I read up on it when I was eleven...)

Oh, God. If I have one more person telling me I'm being negative because I have carefully considered reasons why their miracle cure won't work for me ....

The worst is when it's the doctors.

Oh yes. And it pisses me off because "You're negative" is one of those shutting-down things, it puts it all on you and allows them to be huffy. You literally can't argue it because they don't hear anything you say after that.

And they always make it all about them. I've had situations where people make a suggestion, and I say "Won't work because [extra bit of information]" and they go "Well I didn't know that!" No, because... you didn't need to. My medical history is my property, I don't see why I should spell out everything from the state of my joints to the damaged big toe from childhood football to the inability to eat certain things. (That's another one - I have food problems. EVERYONE comes out with "Is it celiacs?" Let me see, I've been getting poked at because of it for about 17 years now, and somehow 17 years worth of doctors and dieticians have managed to miss one of the most common food issues in the history of food issues...Yeah. Right.)

Oh, gods yes. This is what my current (and soon to be former, thank goodness!) landlady is all about. She thinks because her husband has MS and is quadriplegic, that she knows everything about my health problems and if I happen to reject a fibromyalgia site she links to me that hasn't been updated in five years (and was pretty blatantly a con anyway), that I'm not trying.

I've seen some fantastic essays on how people don't realise just how much they're demanding when they ask you to try new stuff (Time off whatever meds you might be on now, time ramping up for it to work, time dealing with the side effects - they can be asking six months of your life and serious damage to your health, and they don't get that.) But people just... can't seem to understand.

Yeah, though I think this is one case where she simply didn't care to understand-- she has bitched me into tears for not helping her lift boxes before now, even though she knows full well that my shoulders try to dislocate and it causes me a lot of pain. Same with using the dishwasher in the shared house- "my knees and back hurt all the time, and I have no problem using the dishwasher, why should you?" when I have fibro and EDS-h and all that lifting and bending to fill the dishwasher with my stuff and everyone else's would put me out for the rest of the day. *snarls at her* I can manage with my own stuff, but why should I have to clean up after other people when it only makes things worse for me? She's crazy.

Oh god yes - I hate the "Well I can do this, why can't you?" I've started turning it around - "Well I can knit, why can't you? You're just not trying hard enough. I'm not scared of heights, why are you being such a wuss?" Funnily enough, they don't like that.

Ooh, I like that.

I don't actually believe it, obviously, but it seems to be much easier to turn it around on someone and make them understand that way than to explain.

Though it's amazing how many sputter "But that's different!!!"

Yeah, that makes sense. Is there a documented reason (part of your condition) hearing aids don't work for you, so you could wave your paperwork in front of their noses? Or even find some documentation that says HEARING AIDS DO NOT WORK FOR ALL HEARING LOSS SITUATIONS even though this is the most OBVIOUS THING IN THE WORLD?

(If you have already tried this, I'm sorry!)

I should have got that part written down - the short version from my audiologist was that because I have physical damage (scarring) plus damage to the little bones, plus nerve issues, anything short of the insanely expensive ones wasn't going to give me enough help to be worth the hassle. (I know that sounds like he was on comission, but I trust him.) The basic version is I'm just unlucky and have a few things going on at once, but people can't seem to get their heads around that.

People just automatically go "Oh, bad ears? Hearing aids! Make everything better!"

I did consider telling them that (true story) since I was asked to leave my electronics class because things kept blowing up when I touched them, I'm scared I'd lose an ear if I had something electronic hanging off the back of it...

It's okay-- you also don't have to say anything about your medical history unless you want to, and I hope I didn't imply you did, oy. (We're fortunate enough that my daughter is helped by hearing aids, and the insurance mostly covers them, but we could've easily been in the same boat.)

Ha! Tell them the hearing aids might attack, that might do it.

Oh no - I didn't feel under pressure, don't worry. Getting questions in a space that's about disability, where I can assume other people here either have a disability or at least have a clue, is totally different to being harassed by some able-bodied person with power over me out in the wider world. I was just trying to explain. A bit badly, since I slept through most of biology, but. ;)

And yes! I should tell them I'm "not allowed to carry anything electronic on my person after *lowers voice* that incident in '02..."

I got it! I think, at least. :D

DO IT. (Good luck with them, anyway.)

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I never thanked you, because I didn't need it until a year after you posted about it. But a while back, I developed what the doctor tells me is an inflamed radial nerve (but he doesn't have a clue why it should be inflamed). When the pain returned after two steroid shots (the most my GP thought was wise), I asked about the lidoderm patches. She wrote me a script, and they work, yay!

I don't need them often, so I passed some to my friend, who's having increasingly severe post-polio pain... and they work for her, too. Yay, again!

So, from both of us - thank you so much.
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Oh, that's lovely to hear. I seriously keep pushing those things everywhere; if more people knew about them, there would be far fewer people in intense pain!

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Follow up to yesterday.

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