The issue of the relationship between how I present my blindness and the extent to which I am or seem adjusted to it, has been very important for me for a long time, and has gotten more importance in 2004, when at once I lost significant amounts of vision (for me) and started experiencing greater problems due to the little bit of vision I still had, cause my light sensitivity worsened, likely due to the cataract - at least, that’s what I heard another rehab student say. On the one hand, I felt I ought not to care about my residual vision whatsoever, cause it was even less than it had been before. Yet on the other hand I truly couldn’t turn off my light perception, and it was troubling in some ways. I still haven’t figured out all that. For instance, I sometimes wonder if I’m not wasting my energy by doing some things visually, like looking for sidestreets, while I’m sure there are non-visual techniques to find out. That’s what Dad said to explain his skepticism of sight training: that I ought to learn to function without my residual vision. Fortunately, Mirjam (my former sight trainer) agreed.
Still, what my father said always came across to me as: “You’re blind anyway and don’t ever think you’re anything else.” I haven’t disagreed with the idea that I’m blind for over six years - it was sometime in the autumn of 1999 that I replaced “partially sighted” with “blind”, and at this moment I cringe at the idea of anyone calling me “partially sighted” or even “severely visually impaired”. “Legally blind” is fine - till Friday, I didn’t even know there was a Dutch term for that -, and so is “nearly blind”, but not these politically correct statements. As for what I say myself in reference to my blindness, the situation is different: it has to be “blind”, otherwise I don’t seem well-adjusted. Unfortunately, in the Netherlands, “blind” always connotes “totally blind”, as opposed to in the U.S., where it seems to be more accepted that blind people may sometimes have a tiny bit of vision. Still, the 1998 folk who said I was poorly adjusted and gave as a reason that I don’t call myself blind, did mention somewhere that I had some residual vision, in that I saw the doorknob when entering the testing room. I now agree with her apparent philosophy: that it’s nonsense that only the totally blind are blind, and that “partially sighted” was (and is) an inappropriate term for me. However, I’ve long felt it to mean that my residual vision shouldn’t matter to me, in neither a positve nor a negative respect.
This has had its advantages, in that I got used to presenting myself as blind and presenting myself with the alternative techniques belonging to the blind, like the white cane. I started using it in the autumn of 2000, and at first I felt embarrassed and stigmatized, but I got used to the idea to the point that I’m still feeling sort of troubled at the idea of appearing blind, but I think the white cane is a better means of being seen as disabled than my embarrassing way of walking without it.
During all these years starting in 1999, I kept mentioning my residual vision when explicitly asked about it, and I kept feeling sort of strange about the totally blind. I remember when I was at the International Computer Camp in 2002, meeting a Dutch staff member named Suzanne, who was totally blind (she hadn’t always been), and at some point being strangely astonished at her knowing something, I think what we were going to eat. As if I, with my tiny bit of vision, could see that: she just smelled it. Having met more totally blind people in the years that followed, I’ve come to realize that I was attributing far too much of what I did to my tiny bit of residual vision. Turning off the lights in my room cause of light sensitivity made it clear to me that I could do the same in the dark as while looking, and I hence got a better understanding of what my residual vision meant and didn’t mean to me. I must admit that in some instances I still find that hard, like travelling in the dark, but I’m learning and growing everyday.
How does all this relate to the question of whether to mention residual vision and what message my choice about this is sending? As with many issues, I’m having a paradoxical view on that: on the one hand, I feel I ought not to be bothered by my residual vision and to pass for totally blind, but on the other hand the way my vision is still both helping and troubling me, makes me emphasize it more, and maybe more than I should. I wanted Kira’s explanation about the light perception and seeing objects thing, cause it gave me something realistic to mention, that could explain why I look for sidestreets or why I’m light sensitive. It’s not just relevant for others - I wanted this explanation cause I wanted a realistic image for myself. I believed that the optometrist at rehab was correct, but I couldn’t understand why I had the vision I did have and how it was connected to the outcome of the low vision evaluation. I did not alter my explanation of what I still see on Friday, cause it’s the way it is, but I now understand that it’s possible.
I still don’t fully understand the factors contributing to the question whether or not to mention residual vision, but I now have something realistic to say, should it be relevant. This doesn’t feel like poor adjustment. Exaggeration or using incorrect terms, like “visually impaired” or “partially sighted”, does. Kira pointed out the Dutch term for “legally blind” - defined as someone who has vision of 20/400 or less -, and it’s fine for someone to call me that. I’m not sure what message it sends if I’m going to use that term to refer to myself. The person in a recent Braille Monitor essay who wondered if he was blind, said it was too vague a term, and said blindness should be defined functionally. I agree, and in that sense I will always say that I’m blind, but people’s misunderstanding, even at high school and at rehab, of my light sensitivity, makes me feel that to people who are not casual strangers or people I’ll only meet very occasionally, I should have to explain something. Is that poorly adjusted? I don’t know.
In 1999, when I entered high school, there were two different types of presentations about my situation. One was the one I gave to my classmates, pointing out that I’m “nearly blind” and consequently explaining what I could and couldn’t see for a couple of weeks to curious classmates. The other was the one my teachers have always gotten from my parents and Mr. De B.: “She’s blind.” The rest was irrelevant except when dealing wiht light sensitivity issues, which I never mentioned, or when it was noticed that I was looking at something - but who knows, maybe that’s just a blindism, one could say. Pretending to look around is said to be one, I read someplace, but is sincerely looking around? I don’t know. It’s always been forbidden, and so has looking for sunlight to orient to. Is this to get used to adjustment? Is it in fact maladjustment? My situation of 1998 was similar to that of 2004, indeed, and that could be called poor adjustment to blindness, but my situation in all these years between 1999 and 2004 and now in 2005? I don’t care about getting better sight in some way, like through correct lighting - I hate light and don’t care my vision is better with 360 Lux than with my comfortable 150 Lux or less. I don’t care that people will tell others that I have no useable vision. Is it still poor adjusmtnet to mention that I have light perception and hence am light sensitive? When I returned from CPH on Friday, I kept telling Mum things like “Not that it’s relevant, but anyway”, just to soothe her: I wasn’t returning to my 1998 situation. But neither do I want to feel I ought to present myself in a certain way, get misunderstanding for things like light sensitivity, just cause it seems well-adjusted.
