Ari Kerssens thought he would become a makeup artist. But plans quickly changed when he lost most of his sight at age 19. Photo: Becki Moss
Ari Kerssens always thought makeup would be his future. He grew up watching queer makeup artists on YouTube, experimenting with 'bad raccoon eyeliner' as an emo teen, and even enrolled in a makeup course towards the end of school. But his path took an unexpected turn, when he lost most of his sight at age 19.
"I went through this period of real isolation, the closest thing I can kind of think of is when people describe the overview effect astronauts get when they see the whole Earth from space... you just see all these networks and social dynamics and things happening that you were so in the middle of, and now you're looking onto it."
Kerssens has a rare genetic eye condition called Knobloch syndrome - the name, he says, "is so not sexy".
"Long story short, it just means my retinas like to detach. My right retina actually detached when I was 10-years-old, but I was very shy as a 10-year-old, so instead of telling anyone that I'd kind of gone blind in my right eye, I just grew an emo fringe instead."
Makeup, for Kerssens, started as form of gender exploration.
"What I wanted to be was this sort of androgynous in-between, and makeup came naturally as that developed in me. I got asked to do makeup professionally when I was 18 and living in Melbourne, and then I came back to New Zealand and decided I wanted to study makeup and get a qualification after a bit of dilly dallying and thinking, 'What am I gonna do with my life?'
"It was quite funny because by the time I finished that qualification, I think it was like two weeks after, my left retina detached, so that was kind of like, 'What the hell?'."
Kerssens' left retina detached two weeks after he completed his makeup qualification. Photo: Becki Moss
Kerssens spent the next six months in and out of hospital, assuming things would be fine after an operation and some healing time. But his left retina kept detaching, and he spent much of that year uncertain about what would come next.
"This comes from ableism that was just inherent in me, growing up in the society we grow up in, but I saw myself as broken, I saw myself as damaged and that I needed fixing. My brother actually has the same thing as me but he was born totally blind, so I thought, 'Okay, I'm going to do what I can to contribute towards the science that could one day prevent this kind of thing from happening'."
Kerssens enrolled in a course to study genetic modification with an ambitious goal in mind.
"The end goal was to take someone's genes, modify whatever genetic thing was going on in the stem cells, grow those stem cells into an eyeball, and chuck it back in your face. Easier said than done. But anyway, I ended up getting a degree in biomedical science specialising in genetics and neurobiology... but by the time I got my degree I thought, I don't wanna do that... I wanna raise consciousness about blindness and disability [instead]."
In 2018, towards the end of his course, Kerssens met Caitlin Smith, a New Zealand singer and vocal coach who is legally blind. And that's when his perspective on blindness started to change.
"I just saw the way she was absolutely kicking ass... she's a big advocate of blind people. Caitlin was probably the main catalyst for my own sense of blind pride and actually the shift in my own understanding of blindness and disability in general.
"Disability arises when a person is interacting with the world around them, and those interactions are limited because of the way the world is designed. So if we can work towards a world where attitudes and environments are more accessible and less disabling, then disabled people become less disabled in a way."
Kerssens doesn't do makeup anymore and he's not working on genetically modified eyeballs. Instead, he's now a disability advocate and presenter of Able's new web documentary series - Sight Unseen.
The five-part series talks to young people who are blind, about their experiences of the world. The series was filmed across Auckland, Wellington and Wanaka at the end of 2024 and makes the visual verbal, with audio descriptions that are a fixture - rather than an option - of each episode.
Some 180,000 New Zealanders are vision-impaired and can benefit from audio description, but Kerssens says accessibility in media is often an afterthought.
"A lot of the time, adding accessibility really is an afterthought. It's kind of the first thing to go when budget cuts happen, it's retrofitted which is more expensive and less efficient ... a lot of what motivates me is creating a more accessible world as a standard."
In Sight Unseen, audio descriptions serve a function, but that doesn't mean they're boring. Many of the descriptions are lighthearted and entertaining.
For example, the first episode, which features para alpine skier Thomas Coysh, opens:"At a ski field, a person wearing a vision impaired bib gets into skis and starts sliding down a snowy incline ... before wobbling and eating shit on the ground".
Presenter Ari Kerssens gets a ski lesson in the first episode of Sight Unseen. Photo: Becki Moss
"I can't take any credit for the audio descriptions. They asked me how I might describe a few things but really it was Duncan Dykes, the audio describer, and Sam Smith who is a low vision comedian, the two of them came up with the whole thing and I thought it was really good.
"I always say to audio describers, don't be afraid to have a personality, don't be afraid to be silly, you can still totally get the point across. You can get people thinking about the same things but in a way that's much more fun and joyful... audio descriptions can be part of the artform itself and that's what we did with Sight Unseen, with the audio descriptions being open, it's kind of baked into it, it's designed around it, and it becomes part of the presentation of the series which is fantastic.
"When you design things with accessibility in their core, they flow, they're more efficient, they're cheaper to create, it's just a win-win situation... it was just a part of the series itself rather than something you toggle on and off... we didn't have to work around dialogue and sounds, so it worked seamlessly."
Kerssens says the most rewarding part of presenting Sight Unseen was meeting deverse human beings, all with different levels of blindness or low vision, but with one thing in common.
"They were really just living. Or in the words of Paris Hilton, they were sliving (slaying and living ie. being successful). They weren't perceiving themselves as victims in a way that I guess I did when I was younger. And I think many people kind of do. I think to be born blind is one thing, but then to have sight and then lose it is like, of course you're going to feel like you've lost something, there's a sense of, 'Oh, I can't get back to what I was', that's totally natural.
"I remember speaking to Thomas, he was looking for work basically and then he found para alpine skating, and he was like, 'Oh, I can still ski, I can still do this thing I really love to do', and not just do it, but do it really well and come to represent New Zealand internationally.
"Witnessing that kind of blind joy in a way, and the different ways that everyone I interviewed kind of expresses and embodies it, that was really beautiful."
Sight Unseen is available to watch on able.co.nz and on Instagram and TikTok.
