There seems to be a lot of tension between the blind, low vision, and sighted communities in terms of what it all means. Each group being afraid of the others, and not knowing or daring to relate on any real level of authenticity.
It always seems to be a competition about what is worse.
I can say what is worse for me, but I can never presume to speak for someone else.
But here is the thing, everybody’s life sucks to some degree or another, and nobody can understand anyone else’s reality because they are too busy living their own.
No wonder accessibility doesn’t work.
Shit, I can barely relate to who I was a month ago in comparison to now. And I lived it. So how the hell we expect others to understand is beyond me.
So for the record, Here is what I liken blindness to:
You know when you put a sugar cube into a glass of water, and it dissolves before your eyes – well that is sort of how it happens.
Something exists, and then it doesn’t.
As if like magic that sugar cube disappears before your very eyes, yes The same eyes you trust to give you feedback about the world around you. The eyes that see the flowers, admire that cute guy, shop for those shoes, balance you on the treadmill, tell you there is a car turning without a blinker, read that street sign, reach automatically for your keys, laugh at that meme, or wave to your friend across the street.
It was there one second, and gone the next. Accept that it is so gradual you barely notice. Or did you.
Where is the sugar cube?
It has literally vanished into thin air.
As in There is not a black spot where it once resided, like those blindy emulation pictures you see in the optometrist shops.
It just disappears.
Nothing but a clear glass of water in its wake.
As if the sugar cube had never been.
You can remember the cube, but you can no longer see it. But if you think hard, you sort of can. At least in your inner eye, and if you do that long enough, you can almost convince yourself that it is still there. Especially if you don’t have the glass to look at as a distraction to bring you back from the madness within.
And if you’re given enough practice, the inner world becomes as real as the outer.
So does it still exist?
Sure you can argue yes, but it does have you questioning the validity of things does it not?
Especially when you know the sugar cube hasn’t dissolved, but rather you just can’t see it.
But do you know you can’t see it?
You can touch the sugar cube, which can make you think you can still see it, as in your mind it is as clear as day.
But is it?
Because when you look again, really look with your eyes for said sugar cube in that glass, it isn’t there at all…
Now imagine applying that to the details of your entire life. As in absolutely everything.
The uniqueness of Your kids’ faces are the first to go. The markings on the stove, The details on an elaborately cut crystal vase, the handles on a drawer, the small print in the paper or a food label, the numbers on a license plate… Then the bigger stuff. Suddenly those once crisp outlines begin to blur, colours fade, and you feel like you’re looking through cling film, then the cling film gets thicker, as though somebody has added another layer, and then another, another, and another… Then instead of cling film, it becomes like like smeared Vaseline. And the Vaseline gets thicker and thicker and thicker and harder to see through until it all begins to build into a chlostraphobic version of nothingness. No longer do you have a horizon to affirm you are standing upright. Whereby no amount of moisture giving vitamin and mineral rich eye drops, natural remedy, wives tale, mantra, prescription eye-wear, better lighting, worse lighting, more contrast, bigger print, less clutter, sunshine, cloud, moonlight, or candle, eye rubbing, hand holding, squinting, scrunching, and screwing up your nose, closing them for a second, or good night’s rest can eleviate.
I ought to know, I tried everything. And Michael in his infinite support, allowed me to do so, and even enabled it.
Just eat red capsicum I read on the internet, so I did. It was pretty much all I ate for a month.
Cod-liver eye drops, vinegar eye drops, herbal teas, cinnamon capsules, black pepper, spirulina, salt water… You name it, I gave it a go.
You can still hear your beautiful children, but they become disembodied and it is only when you touch them, you find a solid figure.
You trip over everything. Even if you moved it a second before, and promised yourself you would remember. But without that beautiful passive unobtrusive act of vision to remind you, you forget.
You forget where you put the washing basket. Your wine glass. Your sunnies… Sometimes you even forget where you put your cutlery, even though you’re using it.
The stupid details which you never worried about previously , such as the line between the grass and the path conspire to become one.,
If you can’t see it, does it mean it can’t see you? And if you can’t see it, does it exist? And if it does in fact exist, but you can’t see it, do you exist? And what if you don’t. What if you are actually nothing.
It isn’t as if things go dark the way they do when you close your eyes.
Oh no no, that is far too tangible for the stealthy sneaky slimy tenderals of blindness.
She will strangle you with such elliquence and soft supple fingers, that you’ll learn to long for it. Because surely the end has to be better than the constant stressing, straining, and struggling you are experiencing now. Or so you think. But can you really be trusted?
On top of that, to make matters worse or better, depending on how you see it, your brain kicks in and imagines things that aren’t there as a way of surviving. Sort of like skim reading happens. You just fill in the blanks and make it up according to what you think it ought to be rather than what it really is.
Which is why closing your eyes and trying to imagine how it would be is no substitute.
Sure it can prevoke an emotional reaction, instill fear into your soul, confront you with the volnarability of it all, and have you questioning how you would cope without the safety net of opening your eyes to see the sunshine again, but it is not the same.
It is far more exhausting and disorientating than anything which can be simulated.
This is not to say I disagree with simulation, such as blind folds, or vision goggles. Because I think they have their place, and I am a fan of utilising them within my work.
Again the blind community is highly divided on this approach, and absolutely each to there own.
But I would argue, that if someone isn’t scared of going blind, then they should be. And if simulation glasses or activities prevoke a sense of empathy, no matter how distilled, then it is better than nothing.
Blindness cannot be explained. But some of the tasks we complete on a daily basis, can be better understood if someone is afforded the opportunity to walk a step or two in our shoes.
So maybe try putting your toothpaste on your toothbrush tonight with your eyes closed, and see how you go.
The sense of personal isolation when a girl goes blind can be mind bending in its relentlessness. Even with the playfield of social media for company, it can make connecting or rather feeling connected almost out of reach .
Although A big thank you to every one for posting their daily grind up on facebook for me to enjoy. I may not always comment, but I do read them.
And even being out and about in social situations with trusted family and friends becomes difficult. Difficult because that finite amount of energy you actually have reserved for authentic engagement is used up on trying to orientate yourself in the universe. Not trip over that twig, find that chair, feel that breeze, hear that potential threat, and generally gather information about your environment any which way you can, whether you want to or not.
In other words, your nerves are frayed, and they never ever ever get a rest. So you’re screwed before you even begin.
I know I am not the only one who has gone through the utter excruciation and greif of losing a sense.
But I am in the minority in terms of having come back from the brink of total blindness. Even if percentage wise it seems hardly worth it medically speaking.
There is still so much we don’t understand about what functional vision is, and is not. And although we think we can quantify it, trust me when I tell you we cannot. Because perception cannot be measured or made to fit in any box.
What I do with my 1% is vastly different to the next person.
Just as our finger prints are unique, so is our ability to perceive. Thus, so is our ability to interpret visual signals regardless of where we think they come from.
Which is why when my best friend rings me to tell me she saw an elephant in the park, I don’t doubt it. I just ask her for the details, such as what did it say, so we can laugh about the ludicracy of it all.