The hidden price of blindness: Palmerston North mother lost her sight after measles

“The thing is that people often ask me, do I regret it? Is it a bad thing? Would I be able to see if I could?” she says.

“And I say absolutely not. If you gave me the choice now of being sighted, I wouldn’t do it because it’s part of my identity.”

But there is also a considerable financial and emotional burden that comes with being blind and looking after a large family.

With four kids all under the age of 15 and her youngest child just 6 years old, En has to travel to endless extracurricular activities.

The taxi fares are expensive if public transport is unavailable, and when taking a taxi alone, she worries that she could be dropped off in the wrong place or be taken advantage of by the driver.

“One of the biggest things for me is maybe not even the physical obstacles, it’s kind of the emotional toll because I feel like I don’t want to be a burden on people,” she says.

En went blind when she was 18 months old after becoming sick with measles. She was born in Vietnam after her family fled Cambodia in 1975 to escape the brutal Pol Pot regime, a period of extreme violence and mass deaths. After 11 years in Vietnam, they moved to New Zealand.

“I doubt that the vaccine would have been available [in Vietnam] and even if it were, it would have been extortionately expensive,” she says.

“I admire my parents enormously for doing what they did for us, getting all of us to this safe place.”

Olivia En has been blind all her life after contracting measles as a baby, and says her disability has helped her see the kindness of people.

This week, new cases of measles in Northland sparked concern over the spread of the contagious illness in New Zealand, bringing the number of infections to nine in the latest outbreak.

En’s children are immunised and she continues to fully support vaccinations.

Having known no other life, En is well used to navigating the world without sight. But there are frustrations, such as the ridiculous amount of time to order pizza online because the website mainly uses pictures.

To work on her computer, En uses a screen reader – an app that reads aloud words – but for highly visual websites, it struggles to work.

Web designers simply do not take into account people with disabilities using their sites, she says.

Adaptive equipment can be expensive, and when En buys household appliances, such as a washing machine, she has to select specific models that don’t rely on visual screens.

On a smaller scale, En has to buy a special Braille board to pursue her favourite hobby, competitive Scrabble.

Unemployment high in the blind community

The unemployment rate in the low vision and blind community is extremely high, with pathways into study and employment more difficult to access.

En loves playing competitive scrabble and uses a Braille board.

En studied a Bachelor of Arts / Bachelor of Laws (Honours) conjoint degree at the University of Otago.

“Getting even a part-time job as a person with a disability … it’s really just impossible in many ways.”

Blind Low Vision NZ’s head of fundraising, Bernadette Murphy, says blind and low vision people struggle to find jobs because of unconscious bias from employers.

More than 50% of the organisation’s clientele are unemployed, Murphy says.

Often, managers hiring for a role will pre-judge the capability of a person who is blind without considering their qualifications.

En is now working as a guidance counsellor after deciding to switch career paths because she was unfulfilled by work as a lawyer.

“I’ve always wanted to do a job that’s about helping and supporting other people, and being a counsellor, you’re really walking alongside people on their journey to, I guess, live the life they want to,” she says.

Murphy says there is a “higher invisible cost” to being independent as a blind person because of the need for specialist software technology, white canes or a guide dog.

She says even a simple doctor’s visit can become difficult because of the need to reveal confidential information to another person for medical forms, which raises privacy concerns.

“Accessing these essentials is a human right, whether it’s being able to go to the doctor, feeling safe walking down the street or having employment, but when you have a disability, these things become a privilege.

“It’s not just the everyday cost of living; there’s another layer of financial support that needs to be put into place.”

Although Blind Low Vision NZ is the largest vision rehabilitation provider in New Zealand, 80% of its funding comes from donations, she says.

En says her black Labrador guide dog, Kyle, is a terrific help and “the best-looking man in my life”.

And it’s not all ” doom and gloom” being blind, she says.

Having a visual disability has given her incredible problem-solving skills and means she never struggles to think up clever ways to carry out tasks.

“I think I also get the opportunity to see the best of people a lot more than maybe someone without a disability,” she says.

Recently, a group of schoolchildren in Palmerston North eagerly helped hernavigate her way to her child’s school classroom. Every day she is on the receiving end of small acts of kindness.

“There are always people taking that little bit of time to notice and ask if I need help. And it helps you to be less jaded about the world,” she says.

“I get the privilege of seeing that side of humanity.”

To donate to Blind Low Vision NZ, visit its website or phone 0800 DONATE / 0800 366 283.

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