"Why do these things always happen when I'm with you?" diffrentcolours
asked, leaning over the steering wheel in hopes that those few inches would provide crucial to seeing better through the pea-soup fog near Kendal, after we abandoned the M6 and its stationary traffic.
The trip got better from there. We spent the weekend in Dundee, at Scottish Liberal Democrat conference, exhibiting for LGBT+ Lib Dems, seeing friends, drinking whisky and beer and free wine, winning a giant stuffed dog by guessing his birthday (I suggested my own birthday of course), watching Wales win marvelously in the rugby (or napping and watching me watch the rugby), knowing that most of the world's cheeses sink rather than float (I was so relieved to be right about that; D's faith in me as someone who really likes both science and cheese was on the line!), and seeing (cement statues of) PENGUINS!
I'll come back to the penguins, but first I wanted to say something about one of the fringes. It was put on by RNIB Scotland, and it was about supporting people through losing their sight. It seemed generally relevant to my interests (and free lunch!) but I wasn't expecting to be hit as hard as I was.
There was an academic (with sight-loss herself) talking about her experience of counseling a woman who went blind late in life. An important step was the woman, who'd been so upset about losing her independence, realizing that there was an element of dependence in her life. She was much happier, no longer clinically depressed, living a fuller life...but of course she was also more dependent on her carers and other people and assistive-technology things.
This was just a passing reference in the presentation, but it was pretty much where my brain got stuck.
I kept thinking about a childhood where I tried so hard to be normal, to fit in, to do everything expected, to be like the other kids, to be independent. It must have worked; not being able to drive was a huge blow for me, not only because it meant I could hardly have a private life outside my own head -- I couldn't buy anything, go anywhere, see anyone or do anything without my parents knowing -- but because it was a sign that I'd "failed" in being independent and being like everyone else.
But now looking back, it was also the first time that I got to legitimately step away from responsibility I couldn't fulfil. And as much as I hated not driving, I loved being able to say "this is not for me, I can't do it, and that's okay." It was such a relief!
Everything else -- reading off the blackboard, catching or hitting things in gym class -- I was just about able to do, although such things were a lot more work for me than they must have been for other kids and I was usually terrible at them. But I didn't think they were so much work at the time, because I had nothing to compare my experience to, no concept of better eyesight or better support.
It wasn't just more difficult for me to get by, it was hugely more stressful, but I didn't think of it that way either. All the focus was put on independence, and I was a pretty independent girl by nature, so I never questioned any of that. It helped that I was smart in ways that made me good at school, mostly having a good memory for what I'd read (I've always used this to get around having to read signs and stuff, and I basically had to memorize sheet music in order to play the piano, which I did on a regular basis), because being clever masked some of the difficulty I was having and the stress it caused me.
Even I didn't realize how anxious stuff like strange places or new situations could make me, until quite recently. A combination of finally going to the doctor about what turned out to be incredibly bad anxiety, and thinking and talking a lot about disability with clueful disabled friends meant I started to realize how the anxiety dovetailed with the visual impairment and the struggle not to seem visually impaired.
I find it really hard to ask for help, but it does help keep the anxiety down and I've done far more mortifying things to tame that beast. Now I try to say I'm partially sighted (I really like the British term; in America I'm "legally blind" and I don't think people have as good an idea of what that means; I didn't for ages myself even though I knew I must be that because my mom told so many people I was...I guess both countries use "visually impaired" to some extent but that rubs me up the wrong way too). I worry people will react badly if, say, I ask what gate my flight is at (I hate airports; some of the least VI-friendly places I've ever been), and I feel better about asking if I start off saying I'm a bit blind.
I don't like to do that, in a way, but I don't know why I don't like it; I'm not ashamed and I'm not otherwise reticent when it comes to talking about myself. Maybe I don't want to be perceived as making a fuss...but I think some of it's that old "you must be independent, you can be like other people if you try hard enough, so asking for help is like giving in, it's like failure."
You don't have to tell me this is stupid; I know I deserve help when I need it. It's just old habits, so incredibly old as to totally unexamined.
Until, in a flash, most of these thoughts and feelings zoomed through my head when I sat there with my paper plate and my glass of free wine as this academic was moving from the aside about blind people's balance of dependence and independence to whatever point she was actually trying to make. I wasn't able to pay much attention.
At the end I went to tell her how much that bit had meant to me, and she was gracious and clearly pleased to have made an impact. I got talking with her and an RNIB Scotland man who talked about having gotten such a shitty bedside manner along with his RP diagnosis twenty-five years ago, who after listening to me waffle on for a while mentioned symbol canes.
Which I hadn't even heard of (I lost all my "blind culture" when I stopped having enforced contact with caseworkers and their other blind kids when I was in high school) but from the name and context I could guess well enough to continue the conversation. The most useful thing I found with a little googling around tonight was this old Ouch message board
, which confirmed my guess.
I'm simultaneously thrilled that such a thing exists, intrigued to try it (imagine not having to be so nervous in strange new places!), and reining myself in by saying I'd feel ridiculous and I'm not that blind and how would that even work anyway and I'd be awkward and stupid and nobody would get it and I'd be more
But then even the Ouch! poster says, "I know this is going to sound ridiculous but because I don’t really ‘look’ VI I am concerned that some people might think that I shouldn’t be using the symbol cane or be confused as to why I am using it. I don’t want any hassle from anyone as I'm a pretty none confrontational person." So get over yourself, Holly. You're nothing new.
I'm not going to run out and buy one anyway, but it's nice to know they're there. I think it's a lovely idea; white canes are brilliant and it's like a little tribute to how useful and respected they are that people can make use of the recognition even when they don't need the feedback that most people think of as the point of the cane.
Anyway, that's enough waffling. I'll have to come back to the penguins another time; they and their story deserve their own entry anyway.