Managing The Monster
My cataract had been a part of me for as long as I could remember.
Every ophthalmology appointment I had ever had, we would discuss it, but it would be a one-day maybe type scenario.
Yes, you have a monster growing in your eye and impeding your vision, but no you shouldn’t notice it, and no it hasn’t gotten any worse.
Any worse my arse I would think in response, as I argued with them about the loss of detail or increase in eyestrain I had been experiencing.
Even as a teenager, I remember distinctly walking through the Paralympic village with a good friend whose condition was the same as mine, with a similar acuity, and asking him if he too had good and bad seeing days he could not explain.
Yep, he had responded without missing a beat. Seemingly almost as relieved as I was to have found someone else experiencing the same strange apparently no you’re not supposed to get those symptoms
The expert responses always made me feel as though I were invisible, and my word meant nothing. My life meant nothing. And thus I did not matter. Because surely if I mattered, someone would listen.
Every time the answer would be the same.
No, not yet.
No, you’re imagining it.
No, I won’t operate. Not even on the bad eye for practice.
But why I would say with a petulant that is unbecoming.
Because if we do the bad eye, it might make the good eye angry. And we can’t do the good eye, because it is like a stocking, and if it gets a ladder in it, no matter which way we come at it, we cannot guarantee we’ll be able to catch it before things unravel.
There is a good chance your retina will detach, and you’ll be left with nothing they would explain.
And once a retina is detached, there is no way of putting it back.
Long gone were my innocent days of memorising the eye chart within the ophthalmologist’s room while my mother and I waited for what seemed like an eternity for him to arrive. Me not knowing why we were there, and wanting to show him how well I could see, even though we all knew I could not.
Just change the chart my mother would say, as I would dutifully sit in the chair and proudly recite the entire board from top to bottom.
Now what letter is it, doctor Frank would ask with a lop sided smile.
Ummm… Of course I didn’t know. As a child, we had tried glasses with a magnification lenses, but to no avail. Why we did it, I never knew. As it seemed pointless to me.
Nothing seemed to help my vision, and I was ok with it, so why wasn’t the rest of the world? Adults seemed to be always trying to fix me. When all it did was make me feel wrong. Although of course I couldn’t articulate it like that at the time.
And what did they mean anyway. They would talk about my vision as though it mattered, when it meant nothing. Just a word. Didn’t everyone see like this? Why did I get the extra attention? Why was I the problem?
Because although I may not have understood I couldn’t see like everyone else. I was acutely aware of just how much of an issue and chink in the system I was.
I spent my life feeling a shamed, and as though I didn’t fit in. And no matter what I did, it was never enough.
I was always on the edges of things, and everything felt awkward. My drawings were scribble, my writing messy, I was terrible at team sports, I was not musically gifted like the blind kid was supposed to be, and I didn’t make friends easily. How could I, when if someone didn’t want to be friends with me, all they had to do was move out of my very very limited visual acuity, or simply not say anything as I walked passed, and how would I know?
Why were we doing these hand actions to some stupid song? Why did I have to leave the classroom to learn my letters? Why wasn’t the texter ever thick enough? Why wasn’t I picked for the school play? Why did I have to sit down the front? Why couldn’t I see the movie no matter how close to the screen I sat? Why did I have to participate in netball? Why couldn’t I be a graphic designer? Why couldn’t I be good at art? Why couldn’t I study geography? Why did I have to study music? Why wasn’t I given the role of school captain even though my peers had voted me into that position? And why the hell wasn’t anyone explaining any of this to me in a way that I could understand. Why was I being punished for my disability?
Shit, I didn’t even fit into the para athletic community. And surely I ought to fit there. I loved sport as much as the next person. But I seemed to be lacking whatever the it was that I needed to fit.
Just like everywhere else in my world, I was tolerated because I was there. When all I wanted was to be a part of it all.
I was out of place no matter where I went or what I did.
No idea, aspiration, or endeavour was right. I constantly had to apologise for my existence. Constantly having to cut off parts of myself in order to be accepted, or at least tolerated. And worse of all, constantly having to justify my basic needs.
Even today, with all the advances in disability rights, legislation, inclusivity, human centred design, and supposed social understanding, sometimes I have to wonder if the push for inclusion is just a box ticking exercise with no intention to back it up. As so often the powers that be, apply no substance or logic or practical application to their methodology. It is as though they almost deliberately leave a fundamental peace of the puzzle out of the equation, and thereby set us up to fail while still being able to make themselves feel good about just how generous they are by allowing us to dwell within society.
It is as if we should be grateful for not being abandoned in the woods at birth, and should simply accept what is being offered regardless of how shallow the sentiment.
It may be subtle, but it is there.
This isn’t to say I am against inclusion, but I am not sure we are going about it the right way.
It often comes across as though it is inclusion, but inclusion on able-bodied terms, which isn’t really inclusion at all.
And if this is the case, then does the push for inclusion actually allow people to become comfortable with their limitations?
Does it allow enough flexibility for us all to fit? Or does it still require us to play along so to speak in order to feel accepted.
Yes of course you have the right to everything, but… But we’ll still manage to create an environment, which makes you feel different, and as though we’re doing you a favour… that
Add to this the competing and contradictory needs of the different disability groups, and it is practically impossible to get a handle on how they all fit together. So it all becomes too hard, too much work, and too expensive.
Not to mention we as a sub culture don’t present a united front, or respect the nuances of our differences. Instead we see them as a threat to our survival. Be it through funding dollars, notoriety or there’s that word again, validation.
This isn’t to say there aren’t those organisations or times when it is not done well.
I mean for my money, whoever came up with screen reader technology, and audio describe, you rock! But this doesn’t take away from the absolute must have for captioning, transcripts, or hands free speech to text for example. With each of these technologies, and their integration into the mainstream; how do I explain that I didn’t know what I was missing out on until I did. So thank you for getting that right. Thank you for providing me a way to participate on a more even footing within the greater community.
When it comes to participation, no need is any more or less important than another. They are all valid. And if we went about things whereby inclusive practice was a given, or expected as part of the wider culture, then everything, and I mean everything would be less arduous for all concerned. Reverse engineering and adaptation is costly, inefficient and often ineffective in comparison to building it in from the beginning. Sure we can educate, but I believe we have to go several steps further, and learn to accept. Difference is not a threat, it is a strength. Consider it a challenge from the universe to be more creative. ,
I think sometimes we get caught up in equality, and forget what it really means.
What is the good of sharing a bag of peanuts with someone who is unable to eat them for the sake of being equal. When what we really mean is an equivalent experience. So instead of nuts for everyone, why not nuts for some, and fruit for others, and so on.
And yes, I’ll eat the chocolate if I have to. No not the same, but we’re all eating, yes?
Am I making sense?
Why don’t microwaves have a voiceover option for example, that can be turned on if required, and left off if not.
Why are the newer coffee machines from a certain manufacturer touch screen and not push button Yes Nespresso, you know I’m talking about you. So Don’t look at me like that. Just think about it for a second; it is not just the vision-impaired market you are alienating, but those with arthritis, or those who are just time poor… Which is pretty much everyone, yes? .
Why are we as a society not utilising our technology for the good of all, and still making people jump through ridiculous hoops to get it, when it would benefit all of us in ways we haven’t even considered if better options were built in as a matter of course.
Surely machines are supposed to work for us, and not us for them.
Wouldn’t it make sense to give people the opportunity to have equity within their community, because maybe if they felt they had a genuine steak in it, and as though their contributions were valid, they would be more likely to participate in more meaningful ways, and not feel that the only way they can get their needs met is by playing the system, being a charity case, be the hero, or having to fight tooth and nail for the crumbs off the mainstream table…
why in my experience, Why is it that when it comes to accessibility or inclusive design for example, is so much of the work based on a form of emotional blackmail rather than a proper paid profession.
I have lost count as to how many times I have been approached for my thoughts, ideas, insights, and expertise, but without the promise of monetary remuneration. And it has merely been assumed I would be grateful for the experience or exposure… But if I were in any other aspect of business strategy, it wouldn’t even be a question.
It is as if my need is greater, and people know it, so they bank on my providing my input because they are aware that as the recipient of the change, I will be so far behind the eight ball without it, that I will forego my professional entitlement, or compromise the social contract in a bid to see it come about.
Shit, last month , I was offered a certificate of appreciation for my time as an accessibility strategist.
Umm, NO! Or as my youngest sissy would say, fuck no. Now that is just insulting on so many levels. And no, that is not the exception to the rule. As much as I appreciate a good cup of coffee, unfortunately it does not pay the bills. It does not allow me to continue the circle of consumerism. And most importantly, it does not make me feel valued.
So still, most of the time, I am not good enough. I am not alike enough. I am not whatever enough to be respected and recognised by my peers.
I am an inconvenience, until I am not. And by this I mean, until someone else can make a dollar off of me.
Yes you NDIS.
Partly I get it, because if one hasn’t lived it, or isn’t emotionally invested in someone else who has, then how can they get it. How can they make that big why fit their little why. The what is in it for me why. So the question then becomes, how can I help you discover where, what, who, how, and why your role has a ripple effect, and it could be so much more rewarding than you realise if you came at it from a place of inclusion rather than exclusion?
How do I explain to you you don’t know what you don’t know until you don’t know that you don’t know when you don’t want to know?