What it's like to be legally blind does such a good job of describing the state between fully sighted and totally blind that is so little understood, so rarely expected by the sighted world to even exist at all.
"I don’t fit most people’s image of a blind person. I look at things."
I especially like the "there's no easy answer to 'what can you see?' " point, having recently realized this myself when an earlier blog entry about my partial-sightedness inspired that question, and I gave the kind of answer I'd been used to giving since childhood, that I see "pretty well" considering, and with examples of common things that help people know how to interact with me -- that I can see the face of someone having a normal conversation with me, that I can read normal print, and so on. But the more I thought about this answer, the less adequate I found it. I have good days and bad days. My eyes tire easily thanks to the nystagmus, and are susceptible to any tiredness, stress or illness I might have at the time. The environment I'm in can make a big difference to how well I can see -- is it crowded with stuff, what's moving and how fast? -- as can whether I'msomewhere I'm familiar with or not. Yes, part of that's cheating, I know I don't "really" look at a lot of things in my house or on my route to the bus stop I usually travel from...but also part of it's that when I know what's familiar it's easier to spot things that differ from what I'm expecting, and of course those are usually the ones more likely to be important for me to know about.
So, I think I've written about this before, but please don't ask a visually impaired person what we can see. I don't know what you can see, so if nothing else it's like being expected to answer a question in a language you don't even speak.
This is good, too:
I spend my life figuratively putting together the pieces of a jigsaw puzzle to get some visual semblance of my world. Have you ever tried to put together a jigsaw puzzle without having a picture of what you were putting together? That’s what every day is like for me, except I don’t even know if I have all the pieces.The other link I think is so good is what a white cane really means. This too is written by a partially sighted woman who, like me, was well into her adult life before starting to use a cane. She went from finding no need for it, to using it when it was useful to her but getting confused looks when people also saw her do something like ride a bike or read a printed book, not understanding the special circumstances in which she put herself in order to do those things (following her husband on his bike or holding the book two inches from her nose or whatever), to carrying it all the time to avoid those comments, and then feeling annoyed by the ways in which it is inconvenient or cumbersome. I nodded along especially vehemently when she was talking about the internal debate on whether to take the cane on leaving the house:
At the same time, I try not to bow to social pressure and to only carry my cane when I truly need it physically or socially. But the repetitive conversations make that hard. There are many moments, when I stand by the front door struggling with myself. I'm not going anywhere with cars or I'm going to be with my husband every minute and I don't really need the cane to tell people I can't see in this circumstance. And yet I know I'll have to explain myself and the thought of the embarrassment makes me tend toward the cane. And the cane keeps me moving slow and cumbersome. I miss the days of freedom when I could have my hands free and move quickly without getting comments.I remember hearing about this on an episode of In Touch, the Radio 4 show about blindness and blind people, in an episode that I happened to catch by the luckiest of chances because it seemed to be about someone in a position a lot like mine.
Here's a few minutes of this woman's interview, which I've just quickly transcribed. "I feel it actually disables me further. I'm quite able to get out and about on my own as long as I'm slow and careful. The last thing I need to do is tie up one hand with this stick which basically is not serving much practical purpose, it's just sending out a message to people around me." She says she has small children and wants/needs to hold their hand in public, and if you're carrying shopping, school bags, scooters, bus passes, "the last thing you need is to basically tie the other hand around your back. I need my hands!"
There's also the issue of not wanting to muddy the waters, not wanting to diminish the understanding that people who use white canes are "properly" blind, while also not wanting to be perceived as a fake for any sign that you're not completely sightless.
I've certainly heard horror stories of people who've been at bus stops and who've folded away their symbol cane to get on the bus and got on able to mount the steps without any problem and smile at the driver, and the people around them slightly suck their teeth. As in 'mm, you're faking it!'And I think that too, actually: I think people would like to be more helpful and less exasperated, and that a lot of them would be if they knew, and I think I'd like to be less impatient and exasperated too. She didn't have an easy answer for another way to indicate partial sight, and I don't either.
At the same time, what I'm aware of when I'm out with my children without the white cane: my daughter said to me tearfully in a confessional sort of way she admitted that she sometimes finds it quite difficult being out with me without the white cane. Because she's aware of the people around me being unsure of why I'm hesitant at the top of stairs or why I'm slow in crowds or I might bump into people. I'm quite oblivious of their reactions, but she can see it because she's there with me, in some ways sort of helping me, and she says she finds this very distressing.
And I found this worrying, I found it sad for her, but at the same time I felt sorry for the people around us who are exasperated by me, because I think that people would like to have the chance to be supportive. I think if they understood more about the spectrum of visual impairment and about the different degrees, then people would step in and be much more helpful and patient.
I think that's because the solution to this is massive, industrial-scale public education about disability -- sight loss in particular but also disability in general, because this is basically the same problem that wheelchair users who ever stand, walk or ride bikes (what the hell is it with people thinking disabled people don't ever ride bikes?) get when someone thinks you can't possibly do any of those things and also benefit from a wheelchair. And that's way harder than I can sort out right now, because it's bedtime.