By Maki Martin
My name is Maki Martin and I am going into my second year as a music and French student at the University of Ottawa. I was diagnosed with nystagmus when I was six months old. I started wearing glasses at age seven and contact lenses at age 14 as I am near sighted and have astigmatism. I learnt the importance of advocating for myself at a young age and with time have become better at it.
Even though I knew it was and is important, advocating hasn`t always come easily. It was not until my last year of high school and first year of university that advocating while raising awareness about nystagmus started to feel natural. Whether it was asking for a larger font size on tests, asking for help on where to find something, or getting closer to objects in order to read, it all felt awkward for a long time.
For me, it was in grade 12 when everything shifted into place and I learned a lot more on how to raise awareness and turn moments where I would normally shy away from asking for additional help into moments where I could advocate and teach others more about a condition they do not know about (unless they already have a person in their life with nystagmus).
The biggest example I have of advocating and raising awareness happened in my high school music room. I was lucky enough to have a phenomenal music teacher who gave me various opportunities when I was in grade twelve to step out of my comfort zone and teach her grade nine class. The biggest challenge in this was reading a music score which has the music for every section condensed into a limited number of pages. Before I learnt to memorize the scores, I would frequently move the music podium much closer to my face in order to see where I needed to cue students and motion for volume control. Of course, teaching grade nines while doing this did lead to quite a few students inquiring about why the podium was much closer when I conducted compared to when our teacher did. These questions were first met with brief answers explaining that I was new to conducting and was having a difficult time reading the music. With time the answers gradually shifted to bigger explanations of nystagmus and how involuntary eye movements make small print harder to read.
Sharing about life with nystagmus made the connection between my students and I grow stronger. While opening up was unsettling at first, I found it beneficial when I was in my own classes, when I transitioned to university, and even while recently starting a new job.
Asking for assistance even when it feels awkward helps tremendously. Of course, it helps you as it allows others to know how to best support you, but it also helps to set a precedent that creates less of a stigma around asking for help when needed which can help many different people in other situations.
Of course it is much easier said than done, but I would not change the experience of learning how to self-advocate for anything. Raising awareness of nystagmus has greatly increased my confidence in myself, but also in others as the people I have talked to have had a genuine interest in learning more. While nystagmus can pose challenges, you can do anything you put your mind to! Put yourself out there and try new things, and while doing so, ask for assistance if you need. You never know what could happen!
