Starting college this year was a goal hard-fought-for by Maeve Doyle (18). She wants to study genetics to help find a treatment for the genetic condition that has caused her sight loss
Going to college wasn’t the question for me. Getting there was.
Education was never easy for me to access. A shame I think, as when it was, it was incredible. I have very fond memories of primary school and of my last few years in secondary.
The problem is, I can’t see very well — I have a blind spot. However, mine isn’t some dark void. Instead, it’s more akin to a firework show, constantly exploding in glorious flashes in the centre of my vision. I’ve had it for so long that it’s not even a distraction, more of an annoyance. It makes reading, working with fine detail, and searching for people and things difficult.
It takes me a while to adjust to light too. If I walk from the outside where it’s sunny, to the inside where it’s dark, I’m blind for a few minutes. It also works the other way around. I remember rocking up to school during the dark hours of a winter morning and having to wear sunglasses inside.
When it comes to colours, I find it difficult to tell similar colours apart if they’re side by side. I did a colour blindness test last year. I had to line up certain shades as to where they’d fall in the colour spectrum — for example, red to orange to yellow. Once I lined them up, they all became the same lovely shade of forest green!
This is all due to Stargardt disease, a genetic condition I was diagnosed with at five years of age that causes progressive vision loss. I have been living with it, and its worsening effects, ever since.
While I now live with my family in Lucan, I spent the first 13 years of my life in Kilcock, County Kildare, growing up with my older brother Seán (21) and younger sister Eimear (15). Back then, my sight wasn’t so bad, and I have fond childhood memories of great fun on the slide and swing and see-saw in our garden. My dad is great with his hands and built us a clubhouse where we used to play games and even created our own kids’ café! I could even cycle around the yard and on the road outside.
In senior infants, I had already begun adapting my learning to suit my vision. At first, it was just sitting close to the whiteboard. Then, as the years went on and my eyesight deteriorated, I started using small gadgets and other devices to help me. They were simple: a magnifying glass, which was stolen and never returned, and a telescope. Then, there came the iFlex, a machine consisting of a screen with camera for reading and another camera for long-distance, mounted to a counter at the back of the class.
This was also the beginning of my transition from physical to digital. I would use a laptop, and then an iPad, in my later years of primary and early years of secondary. I would still mostly work off pen and paper. Nearly all of my books were physical too — usually large print, if available.
The problem with large print is that it automatically takes up more space, a problem which is not so bad in primary school, where you’re usually in the one room, but in secondary, it’s a different story. A textbook that might only be 300 pages becomes over 1,000 pages, divided into separate volumes. I’d start off a class with one volume and have to dart out for the next volume halfway through. My locker wasn’t nearly large enough, so I was allowed to borrow a few shelves in the support office!
I don’t mind being visually impaired. I don’t stare longingly out a window, wishing I could see what is outside. I know nothing else, and I made peace with it a long time ago. I’ve always tried my best to be independent, but sometimes, I have no choice but to rely on people. It doesn’t make me feel helpless. The only problem I have is when people I rely on don’t pull their weight.
In the past, it has negatively affected my grades. During junior cycle, I lost count of the number of times I was handed a paper I couldn’t read, or was given a task I couldn’t physically do. I switched schools after fourth year and had the opportunity to have my very own special needs assistant (SNA). Anything I couldn’t do, they handled. They put me on an equal footing with all of the other students. They typed out what was on the whiteboard, they transcribed paper notes, they told me what was happening. For my part, I paid attention, studied and did all that was asked of me.
I didn’t get to do my Leaving Cert this year, but ultimately, it doesn’t matter — for me, at least. Thanks to my wonderful SNAs and teachers, and my own hard work, I managed to qualify for my top choice, the biology stream of science in University College Dublin. I’ll admit, I didn’t get the points I needed for it. Instead, the disability access route to education, otherwise known as DARE, helped me to get my spot.
I’m not embarrassed about this, nor do I feel like I didn’t earn my place. I’ve had a lot of things go against me and I’m so lucky a system like that exists to help students with disabilities reach their goals. I worked hard, met my subject requirements and nearly had enough points to be accepted. DARE did the rest.
My first weeks in university have been surreal. It’s strange not being with fellow students in the lecture theatre but, as I’ve chosen science, we’ll see each other in the real world of the lab some time. At least, without a daily commute, I have more time for my passions of baking cookies and playing Pokémon, which I’m addicted to!
I’ve recently begun using a cane. The sweep of the cane across different surfaces, such as carpets and smooth floors, is strangely soothing, but rougher terrain leaves my wrist sore. It helps me to focus more on sounds around me, while the cane tells me about what’s in front of me. I’ve noticed people treat me differently as well. They part like the Red Sea in front of me. I sometimes wish I had had the cane earlier, particularly when I twice got lost in Dublin airport. Trying to explain that you can’t read the signs with a face full of tears is not fun!
Like for everyone else, the pandemic has been tough. At the start, I was afraid of breaking social-distancing rules, as I might not see a person until I was up close. Now, with the cane, that’s a little bit easier. I’m at home a lot, but the odd time when I have needed to go somewhere, it’s harder to find a seat with reduced seating on the bus. I miss seeing my friends too. It does upset me not being able to hang out, go to the cinema, go for dinner, go shopping, but I know doing those things would be a health risk and that we’re better off sticking to Zoom.
As for the future, who knows? I might become a genetic counsellor and support people with inherited conditions. Or I might become a geneticist and find a treatment for Stargardt disease! Whatever direction I go in, I’m certain I’ll get there.
Fighting Blindness will host its virtual Retina 2020 Public Engagement Day on Saturday, November 7. The conference, which will be officially opened by international rugby star, Ian McKinley, provides a rare opportunity for people with sight loss and their families to quiz experts on their eye conditions and to find out about the latest therapeutic advances. Registration is free at fightingblindness.ie