I just received the report about my rehab. The things that are very noticeable, in places that I expected but that I still need to write about, are the comments on my residual vision and its relevance and/or significance. In some way, the conclusions drawn by the mobility instructor and the ones drawn by Kira, contradict each other, but that is self-explanatory: I simply didn’t know that I was using my vision as much as I did, and hence I didn’t tell Kira, while the mobility instructor readily noticed it – and so did Kira, eventually, of course. I remember one of my last discussions with Kira. She made a comment about something lying on the table and immediately, I visually scanned it. It was something I hadn’t realized, cause I’d been convinced for over six years that I was blind anyway, and, as a result, had been convinced that I functioned entirely non-visually. At one point, I even thought that I might make a habit out of functioning visually by having people, like the mobility instructor, highlight it. Well, the habit had long existed, and the only thing that changed during mobility class, was that I made a conscious strategy out of it. I’ve never denied that, before 1999, I functioned very visually, even too visually. But after I’d said to myself that I was blind, and had hence decided no change in vision would matter to me from then on, I had the illusion that I also functioned accordingly. Not only was my decision to accept any subsequent change in vision, based on incorrect beliefs – that no change in vision would mean a change in needed adaptive behaviour, cause I functioned non-visually anyway -, but just cause you decide to accept something, doesn’t mean you’re going to behave accordingly. Besides, this is a circular argument. Man, isn’t it astonishing that I could be reasonably adjusted to my blindness for five years based on a circular argument?
But even if it weren’t a circular argument, it wouldn’t be valid, for it wasn’t that I didn’t function non-visually, that caused the major problems when I lost vision in early 2004. And both Kira and Ellen (the CPH folk) reecognized the significance light sensitivity held in my reasons for having to mention my residual sight. It was the only part of my change in vision, that I was still truly troubled with upon starting rehab last August: the fact that, for I functioned non-visually – and so I thought, and indeed I didn’t experience a decline in functioning after my visual loss -, I thought I’d accepted any further change in vision – and, further yet, I didn’t need to learn any new adaptive behaviours beyond those meant for extra independence training, and I most certainly wouldn’t need to alter my explanation to others, or it would be to signify my little bit of vision that I, thank God, retained, which is an obvious sign of poor adjustment -, and the realization that it wasn’t true, cause not only did I hate light sensitivity as such, as it was distracting, uncomfortable and sometimes even painful, but it required both new adaptive behaviour – I would have to buy sunglasses – and an alteration in what I told others – in that, for example, I would have to ask
them to turn off some lights or to let me sit with my back toward the light source. Before, saying I had residual vision only served to show people that for heaven’s sake, I wasn’t (totally) blind. What did you say, accepted? It wasn’t till early 2005, when my nengative feelings about my last decrease in vision started to fade, that I first told someone I had no sight at all. It was for pragmatic reasons, the same reasons that had prompted me much earlier to refer to myself as “blind” even though I didn’t view myself as such. And no, I didn’t view myself as blind. The question resounds in my head: whether I saw myself as blind, even though I had light perception, or as partially sighted? In general, I would never think of viewing myself as partially sighted, and I cannot even imagine that I, emotionally, liked that term. I probably felt I was nearly blind, but no-one should ever forget that I had some vision that I did use and, most of all, appreciate. It was the thing I kept highlighting over and over again in the summer of 2004, before I’d realized that I actually relied on my vision in mobility situations: appreciation. That was the emotional side of it all, that I feel I only made worse by denying it – in that I wouldn’t admit to myself, till sometime in 2004, that I appreciated seeing, which only worsened my emotional turmoil of the summer of 2004. I mentioned that before, when I discussed my newly-found realism in approaching my vision or the lack thereof: my realization that it was possible for me to see the way I saw, and to not see the way I didn’t see – that one came weeks later -, gave me a sense of peace of mind.
Still, I have to admit to having been unable, for all these eighteen weeks, to be truly realistic. Both pragmatism – I’m not allowed to say I have some sight, cause it equals poor adjustent – and emotionalism – I want to say that I have some vision, cause I feel it’s important to me -, coloured my viewpoint. I think it does have some relation to the fact that I was around all other blind and visually impaired people all of the time, where the details of one’s blindness, in the broadest sense of the word, matter much more than they do without other visually impaired people around. The most noticeable way in which my reliance on vision was present – and this was also noted by the mobility instructor – was on my travels. I don’t consider it to be wrong that I rely on vision for some information about my environment, like I did before starting rehab, but I feel that in some situations it’s just inefficient. Of course, both I and the mobility instructor realized this when I was at rehab – well, he realized it more than I did, when he commented, in one of the last weeks, that cause I was focusing so much on my vision, I forgot to concentrate on my cane -, but I didn’t really alter my behaviour. I don’t know how much the fact that there are no other visually impaired people aroudn, contributes to this, but currently I feel more open to try alternate, non-visual techniques than I felt then.
Pragmatism is something else. I’ve realized that I cannot fully prepare myself for total blindness, or any form of visual change, by simply saying I’m totally blind, and, hence, the pragmatism has lost the “moralizing” function it had. Besides, I truly didn’t need it anymore. I already realized this at rehab, but it didn’t get much practical application till after rehab. Just this evening a Socialist Party person visited me. I never use a cane in my house, but the guy still noticed that I had a visual impairment. “Are you partially sighted?” he asked. “Blind,” I corrected. Then he asked if I had no vision at all. “I see dark and light,” I said. With neither of my remarks, I felt that there was a particular philosophical or psychological principle underlying it. The correction that I am blind had an advantage it’s always had: that the guy wouldn’t overestimate my vision. But even without the correction, I could’ve told the person that I used braille or some other alternative technique, should it become relevant – for example, when I would be expected to read some SP material -, cause I know enough people claiming to be partially sighted yet using the exact same alternative techniques I use. But the remark that I could see dark and light had absolutely no relevance at all. It was just that the guy asked me if I had no sight at all, and so I replied truthfully.
That all isn’t to say my difficulties are over, but I didn’t expect them to be. I’ll still feel strange when someone calls me “partially sighted”, cause I feel I don’t “deserve” the term and should’ve been better at highlighting my actual blindness. I will still feel bad when having to explain my light sensitivity, cause it feels “weird” that a blind person can still be sensitive to light. But I’m getting better, and, besides, I’m getting more realistic.
Realism is not some fact sheet of my vision and the lack thereof, as I presumed it to be in early November. It is being truthful about what I can and cannot see, what techniques are and aren’t efficient or preferrable, and what consequences my vision impairment does and doesn’t have. It is both broader and deeper than “my vision and the lack thereof explained”. I realized this when still at rehab, but it’s all easier to practise to people who all know what it’s like to be visually impaired or blind, than it is to those who don’t.
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