American writer Andrew Leland Photo: Supplied
At 19, Andrew Leland was diagnosed with a degenerative retinal disease that is gradually destroying his vision.
Now a writer in his 40s, Andrew has about 6 percent of his vision remaining - enough to notice people looking at him curiously for using both a white cane and a mobile phone.
"I think there's a lot of scepticism that people cast towards disabled people as somehow trying to… fake them out somehow," he tells Kathryn Ryan.
Andrew Leland writes about the process of losing his sight in the new memoir The Country of the Blind.
There's a lot of ambiguity around blindness and a persistent myth that it's binary - you're either sighted or blind, Leland says.
"There's really no space in people's imaginations for something in between. So when you see someone with a white cane doing something like looking at their phone with their eyes, for instance, it throws people for a loop."
Contrary to popular belief, the vast majority of blind people have "some light coming in", he says, and have some appreciation of visual beauty.
Patrick Kerr as 'Michael, Blind Man' in the American TV series Curb Your Enthusiasm Photo: YouTube screenshot
The fallacy that blind people shouldn't care about this is demonstrated by the character of 'Michael, Blind Man' in Larry David's cult comedy series Curb Your Enthusiasm, Andrew says.
Michael is "a very shallow blind man" who's superficial when it comes to women.
"So Larry sets him up with a woman who wears a hijab. It's like the blind man and the woman who nobody can see anyway, you know? And then this plays on these tropes about what right does a blind person [have to be discerning]? Why should the blind man care about visual beauty?
"Blind people have deep and rich relationships with visual culture, whether it's visual art or cinema or indeed the visual appearance of their partners and it just requires a different pathway to access these images."
In Leland's case, the "death" of his photoreceptor cells, due to retinitis pigmentosa (RPE) has been very gradual.
"There's never really a moment of waking up one day and saying 'Ah, another chunk has fallen away' ... The days and weeks and months go by, and you don't really notice that, that change until suddenly you're bumping your forehead on the mantel [or you think] "Why am I such a bad tennis player these days?' Or 'That's the third person I've left hanging for a handshake or a high five this month'.
At first, Leland felt a lot of self-doubt about his vision loss, which felt like an "ethical failing": "I just thought 'Am I not looking hard enough?' you know"
Over the decades, the realisation of every new loss has been upsetting and destabilising, he says, before he gradually adapts to the new level in a "process of almost glacial adaptation".
People who became blind in an instant - such as from an accident - have told him they think that gradual loss is the more difficult way to go.
"It's a cataclysmic event in your life if you go blind suddenly. But the advantage of that cataclysm is that you're sort of forced to do all the work at once, as opposed to the glacial model, which people with RPE tend to follow, which is that, you can be in a state of denial for decades. Those are the folks that you often see, refusing to buy a white cane, and then crashing, breaking their shins on a curb and so on. So it is mentally a lot more difficult."
Leland, like many visually impaired people, at first resisted walking with a cane because of stigma.
"So many blind people I've spoken to wait longer than they should to use it. And the reason for that is that it just instantly marks you with the stigma of blindness and people treat you differently."
Walking with a cane, daily living techniques and learning to read Braille are just some of the skills blind people have to learn, he says.
"I think Braille has a crucial role in any blind person's toolkit ... It gives me access to the shape of language in a way that listening to it doesn't. I know very successful blind people, academics, they rely on Braille to give them direct access to literature and to language in a way that really is true literacy."
As a model of a blind writer, Leland is inspired by the late Argentinian short story writer Jorge Luis Borges.
"His work has been incredibly important to me, in part, just as a model of a blind writer, continuing his work, alongside this new experience, but also, he gave a lecture late in his life on blindness, where he describes blindness, as, not in tragic terms but rather as 'another style of living'. I almost want to get a tattoo of that line. That's such a powerful idea to think of it not as a tragedy, not as a death sentence. But really, it's just another way of being in the world. And I love his definition of vision, what he called his 'readers and writers sight'.
Photo: Penguin Press
Leland says that although he began writing The Country of the Blind with the idea that blindness was 'another country', he now believes otherwise.
"I came to this simple-sounding but important conclusion that ultimately we share that country, it's the same country, and that blind people are in fact, just people.
"Borges and I, we may have been sighted writers, and now we're blind writers but there's there's a deep continuity there that people I think ignore at their peril because it's dehumanising to do so."
While a sense of independence is an extremely important idea for visually impaired people and all people with disabilities, he has learnt interdependence can be a beautiful thing, too.
Recently, his 10-year-old son offered to read Leland a restaurant menu, to save him using his screen reader.
"We had this really wonderful back and forth, where I was kind of helping him interpret the menu because he was still trying things other than nachos for the first time. And yet, he was also giving me access to the menu.
"That kind of two-way street of interdependence, I think, is a really powerful idea that I've encountered through this journey. This lesson is for any of us at any time, [given] the amount of time that we spend on our phones instead of using human shared endeavour."
Gradually becoming increasingly disabled delivers a sense of grievance, Andrew says, and writing The Country of The Blind helped move towards both acceptance and connection.
"If you don't do that work of kind of coming to terms and accepting blindness, it can drive a wedge between you in the world and this real aggrieved, resentful sense of being misunderstood, being persecuted. And I just at all costs wanted to avoid that."
