I'm really getting tired of the very patronising 'Stop being so difficult' type responses I get when I argue my corner about something disability-related or access-related.
Yesterday, on a bus home, the bus driver tried to pick me up in my wheelchair - without asking what I needed, or whether moving me would be a good idea (a general 'no' to that one). He then refused to open the doors for five minutes while he played with the bus ramp, which wasn't working right - while I was standing and asking him to open the door NOW or I would fall over. His response was to tell me to "calm down". Ahem. (Yes, a complaint has been registered - although I have a ridiculous number of complaints against this bus company on file, and none of them ever results in anything useful like, say, basic disability awareness training for their staff.)
Today I exchanged rather strained e-mails with a woman at the accommodation office at Leeds, who wanted to change my plans regarding arrival times. I repeatedly explained that a) to change PA's hours etc only a week in advance can be quite difficult, b) that I need a lot of notice of such changes for this and other practical reasons, and c) that I prefer to be asked, not to told, about changes like this as a result. Her response was rather curt, to say the least. I have compromised, but not happily.
And don't even get me started on the access nightmare that was this year's Greenbelt, from which I am still recovering. There, in almost every poorly thought-out, ridiculously inaccessible situation, it was all my own fault for needing access at all. And I was of course very naive for wanting to make a fuss about it.
The impression I get in all these situations is that it's always *my* problem that I need something. My view, from a social model perspective, is that it's very much their problem - but communicating this is really rather tricky. I end with the reputation of being 'difficult'. (There already seems to be a general opinion at Leeds Uni that I'm a stroppy crip, which I am, but you know - I haven't even got there yet.) And I'm not all that pleased about this 'difficult' image I seem to be cultivating, as I used to be all accommodating and a bit of a pushover, and mostly I was OK with that.
Anyone else find they've got this 'difficult' reputation just for asking for little things that they need? All ideas on how to deal better with people who want to make inaccessible environments/schedules/demands *your* fault, not theirs, would be much appreciated.
7 comments:
You just keep right on being difficult. When being "easy to deal with" means the same thing as being a non-entity, being difficult is the only reasonable choice.
I'm told that staying calm helps. Not that I've ever managed it sufficiently to be able to comment...
Yes, yes I do have the difficult reputation. And I have no idea how to fix it. Like today, nicely and smilingly asking someone to move their car a few inches so I could get into the building (they were parked on the striped ramp). You'd have thought I'd asked him to cannibalize his wife or something. It boggles my mind. All I can say is that I've been there and hope it improves for all of us. Soon. :)
You keep right on going, sister. I'm glad you've got balls, it's better than being a doormat and I should know, I used to be one. I find it helps to have a mental list of smart one-liners, replies that make people think twice about what they've just done or said. Staying calm is hard but sometimes getting loud and angry is the only way. I use humour too. All depends on what mood they catch me in! :-)
I wish I had a good answer, talked to Lene about this last night, about how every days seems to be, "How many people will I have to educate today?" and "How much energy will that take?" (and there never seems an end to the supply of those who barge in and thus need educating).
I think the fact that I pass out, or fall down emphasises to people when I say, "Actually, *I* might be willing to be flexible, but my disability is not." And that is the point, the disability cannot "be able bodied" just for the convienance of someone else, and since you are attached to the disability, you can't either. I know this is hard for people to get, well, until you pass out on them (which I tend to do regularly), after which they can't do enough to accomodate me, which is kind of sad becuase now I just lost the day while two minutes of accomodation earlier means I could have had time that day to do stuff (which is why I don't recommend the 'passing out' method.
If you figure out anything short of a cattle prod let me know. By the way, if it helps I know a Deaf student whose uni refused to provide transcrips so she recorded all her lectures and had to pay for transcripts out of her own pocket for the first year - she was considered a "difficult" student too.
Actually you might try the Hard/Soft approach if you can get The Girl to agree. That is where you come in and say, No, I'm not going to be flexible becuase all I am asking for is what the law requires and if you don't like that go to the EU, becuase if you don't change things, that is where I am going to take you! (thus they understand that change is needed). You are the "hard advocate" you make them understand change is needed.....but they hate you.
Then "soft" comes by who is very understanding and sort of "one of them" and agrees that sometimes you get a bit frustrated and what you are merely looking for is X - which by this time they are HAPPY to provide (but they still hate YOU). As long as you KNOW you are manipulating them, it helps somewhat, and is unjust and irritating that this is a method that has to be used but it is rather effective.
Wow, do I relate to this, but I've got to echo your other comments: what other option is there? My issue is generally with members of my family, who often don't understand what I need or why I need it. I have difficulty being labeled "demanding", but there seems little I can do to change that. The hardest part, right now, is that I have trouble asking for things that aren't necessities, I wind up doing without. It's a hard balance, definitely. Just another one of those skill sets that I never thought I'd have to build up.
Oh definitely! Few can understand the "all or nothing" nature of access. My university asks me if I couldn't consider maybe just being able to go up a "few" (12) stairs and then it would be MUCH easier for them to accommodate my needs. P&O ferries asked me if I can get up the stairs in my own house to make some misguided assessment of whether I was really allowed to complain about the fact their website says there is a lift and their staff told me there was a lift when there was not, and never had been, a lift! I'm not going up public, steel, open, dirty stairs on my hands, knees and face all the while carrying a baby and being climbed over my other passengers, so what does it matter if I can go up my house stairs? British Airways felt I was being difficult wanting to take my powerchair on a flight in a single piece, despite that it had been pre-booked as a rigid chair and dimensions sent in advance, but did I mind if they just cut off all the rigidising tape and cable ties so they could take some other (non-prebooked) luggage?
Gah. Keep flying the flag for difficult, I spent years trying not to "bother" people with my needs and ended up disadvantaged, marginalised and roundly ignored.
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