Operation Sort My Life Out

[cosmolinguist]

Having basically given up on the job-hunting treadmill I was on, because I discovered I was playing a game I didn't want to win (more on this later), I've turned my attention to Sorting My Life Out.

First, the whole "blind" thing.

While this was partly spurred by the RNIB website having job-related stuff that looked better suited for me than it actually turned out to be, I also asked them what I actually have to do to get registered blind (which is just an eye hospital appointment, urgh, but lovely greyeyedeve,, and about help with stuff like getting a white cane --

Did I talk about this here? I can't remember if I did or not. After a lot of "but I'm not blind enough" and worrying whether my eyes were getting substantially worse, which would be bad, or whether I was getting significantly more aware of problems that had always been there and might be helped by stuff that I'd, all my life, been led to believe was only for other people. Whenever I cautiously mention to anyone that I'm thinking about the possibility of letting the idea of getting a white cane cross my mind, they seem as enthusiastic about the idea as I am wary, which has helped reassure me that I'm not, I dunno, appropriating the tools of "real" blind people or trivializing them even though I'm sure I'll feel like a phony for a long time if I do end up with one.

I know these are dumb ideas. I have a lot of dumb ideas lately. If only knowing them to be so was enough to banish them.

So for that I filled in a web form on the council's website, but I've heard nothing back. It's been a month now, and I really need to call them and nag them about it, but it's one of those things I never quite get around to doing.

I did finally talk to someone from Action for Blind People this week (after weeks of them being so flaky and bad at communicating that I actually found it quite comforting to be dealing with people on my level), who were suggested by the less-helpful-than-the-website-suggested employment scheme the RNIB directed me to, and while AfBP didn't seem any more helpful to my situation (like so many things for people with sight loss, they're geared up for people who've only recently lost their sight or are just aging out of school systems and children's social services so joining a new bureaucracy. I'm not really in either group and have very good sight by the standards of these things so much of what they offer isn't useful to me.

Anyway, one of the things AfBP might be able to help me with is chasing down some kind of help from the local authority, though I know from people who've used it not to expect too much from adult social services. Of course there's nothing to stop me buying a white cane myself but I could really do with some information and encouragement that, y'know, my taxes are supposed to be helping to provide, and I'm not in a rush. Though I do find myself increasingly noticing how many situations I find myself in that would be easier if people knew I can't see very well because I think they just think I'm being awkward, or they don't know why they startled me because they have no way of knowing how atrocious my peripheral vision is, or whatever.

The AfBP lady was also very nice on the subject of me being scared of eye appointments and said she deals with lots of people who feel like I do, so I feel a bit less mental and weird on that subject as well, which helps. It's one of those things that I find perfectly understandable in other people but totally unacceptable in me. Yes! I know this is another of those dumb ideas. I think it's because I know so many more people who think optician's appointments are no big deal than I know people like me; I'm comparing myself to the wrong things. (Also I just have to remind myself that a lot of my scary memories are about things that simply will not happen again because I'm an adult now and people will listen to me and the fact that I might not want something to happen to me matters -- of course sometimes things I don't like will still happen, no doubt, but I won't be ignored and my anxieties won't be dismissed like they always were on my innumerable visits to eye specialists as a child, I won't be there for the convenience of doctors who find me an interesting case study because I will be limiting myself to tests that actually might benefit me.)

So yeah. After weeks of phone calls and e-mails to never-quite-the-right-people, waiting for people to get back to me, or getting long slow processes in motion, and now depressing these things all are, because it's like trying to move a huge boulder all by myself, it just feels like nothing's ever going to budge. I still haven't shoved the boulder very far, but I'm starting to notice it moving a little bit, enough for me to keep at it. I go to the eye hospital a week from tomorrow, and when I've got that out of the way I can do a bunch of other stuff that requires the piece of paper saying I'm blind. There's been a bit of progress on the whole "what kind of job can I get?" front too, but that will have to wait for another time.

Comments

[withagreatlove]

As someone with a mild (though annoying) visual impairment, your candid post only inspires respect and sympathy. I don't think I have anything worthwhile to add and I'm not sure that I could say anything appropriate, except perhaps, that you need to make the decisions right for you: if a cane is helpful to you and improves your quality of life, go for it. Having a varying level of ability isn't a contest. No one but you will know what is best for you.

Good luck sorting this out - including the bureaucracy - and I look forward to reading more of your thoughts on this issue in time to come. Thinking of you!

[momentsmusicaux.livejournal.com]

I think it's fairly common for people with a disability to feel they're some sort of fraud because they're not as disabled as other people.

Not that I recall

[czechcakeroll.livejournal.com]

Huh, I don't remember you talking about a vision disability previously, but I haven't been on the LJ recently. What exactly is your vision issue, besides poor peripheral vision and what is your prognosis, if you don't mind my asking??

Re: Not that I recall

[cosmolinguist]

I've talked about it at various times; since it's always been there it's just part of my "normal." But some, not all, of the entries with the ability tag are about it, if you're interested.

I have optic nerve hypoplasia and nystagmus. As far as I've been told they're stable conditions (though I'm told my eyes don't move as much as they used to when I was younger, that wasn't expected to happen! but then I was seeing specialists who I never believed knew more about my eyes or my vision than I did...); the wikipedia article says "There have been no reported cases of decline in vision due to ONH," so, that sounds promising. :)

[strange-complex.livejournal.com]

I'm glad you feel you're making some progress on all this, and that the Action for Blind People lady was nice, even if she couldn't be as helpful as you'd hoped.

Also, I completely loved this aside:

(after weeks of them being so flaky and bad at communicating that I actually found it quite comforting to be dealing with people on my level)

Embrace the flake! ;-)

[cosmolinguist]

Everyone I've talked to has been nice, even though no one's been that helpful. ;) (Yet!) I think all these things are being done by very small teams of very overworked people who are trying to sound more all-encompassing than they're necessarily capable of being.

[haggis.livejournal.com]

I was reading something today which made a convincing case that struggling to access help for disability/feeling guilty about being too demanding/feeling like asking for accommodations is unreasonable is particularly a problem for women because of the way we are socialised and cultural ideas of a good woman as being accommodating and selfless. So really well done on pushing that boulder because the internal barriers are just as difficult as the external ones.

[cosmolinguist]

Thanks. :)

Yeah, this is so hard that I ended up writing a whole nother entry that's basically just about my own internal barriers.