Blind Low Vision NZ awareness: Beating the stigma of limited vision

Lifewise chief executive Haehaetu Barrett's condition literally means she has tunnel vision. Photo / Andrew Warner.

For decades Haehaetu Barrett has hidden her disability.

She didn't tell many teachers, friends, or colleagues what she was battling.

But now Barrett (Ngāti Whakaue) is bravely speaking out for the first time in the hope it will help others.

The Lifewise chief executive has retinitis pigmentosa (RP), a rare genetic condition causing blindness.

The degenerative condition has been described as having a literal tunnel vision due to the breakdown and loss of cells in the retina. Barrett is legally blind. Her vision is limited, she doesn't have peripheral vision and can't see in the dark.

She first recognised something wasn't right when she was 12 and walked into a tree while on a tramp during her school camp. She spoke to her father and he arranged for her to see an optometrist who diagnosed her immediately.

Barrett said she was scared and didn't want people to know, so she hid her condition and adapted to her new life in private.

"I never ever told the teachers," Barrett said.

"Just the stigma associated with visual impairment and having glasses at that age.

"I didn't share and I started avoiding things that would expose my disability."

Decades later, the Māori leader is speaking out ahead of Blind Low Vision Week, which runs from October 10 to 16. She said she wished she had spoken out sooner.

"This is my mahi. I lead disability services all over the motu (country). It's good for others to see people like me with my disability, still doing the mahi," Barrett said.

"I believe it gives people hope."

Barrett said she hid the fact she had retinitis pigmentosa well, as she was "cunning" in her youth.

Lifewise chief executive Haehaetu Barrett's condition literally means she has tunnel vision. Photo / Andrew Warner.

While at university she went on an expedition to Waitomo - a requirement for her degree in social work. Barrett hadn't told her lecturers about her visual impairment.

"I really wanted to graduate, so I found a way to complete the trip. I strategically positioned myself in the middle of the group and used my classmates as guides," Barrett said.

The trek went well, until the end when she had to jump off a ledge and she couldn't see the rocks below. She injured her head when she jumped and was hospitalised. She needed stitches for the gash on the back of her head.

"I'll never forget that sheer look of horror on my lecturer's face after the incident. He felt he let me down, but I did that to myself by not speaking up," Barrett said.

There are some indications Barrett has a vision impairment.

"It's quite common for people with my disability to walk into doors, objects and even people," Barrett said.

Steps are a risk for people with the condition.

"When we're out walking in public, my oldest son - a big solid 30-year-old - will hold my arm and yell, 'Step!' as we approach stairs," Barrett said.

"It's quite funny seeing the reactions of those around us wondering why he's yelling at me," Barrett said.

Because the condition is degenerative, Barrett has prepared for the full loss of her sight one day.

"The fear with RP is that I could lose sight, anytime. I could wake and my retina is fully closed. So we've always prepared for that."

Barrett is enthusiastic that if that time comes while she's still at the helm of Lifewise, she will keep working.

"One certainty is that I wouldn't lose my job because I know they would support me. I'm very grateful for that."

Barrett said she was grateful to her father for his support when she was first diagnosed, and now.

"I was very lucky that my father was able to support me getting glasses. There weren't any subsidies back then."

Barrett has had the same optometrist since she was young and has been involved with Blind Low Vision NZ and Kapo Māori Aotearoa, where there are resources and support readily available.

"I'm not on my own. There's others and there's Māori," Barrett said.

Barrett said she was ready to share her story now "because the services that I lead are all for vulnerable people".

"I can help others by sharing. My story is about resilience."

Retina New Zealand president Mike Smith said the world average rate of retinitis pigmentosa was one in 4000 and there was no evidence to suggest New Zealand was not aligned with that rate of occurrence.

Blind Low Vision NZ chief executive John Mulka applauded Barrett's bravery in sharing her story publicly because it was "not easy", but doing so would hopefully raise awareness.

"We often overlook vision loss and take our sight for granted."

Mulka said there was no formal data on the causes of vision loss, nor of the breakdown by ethnicity.

"For us in New Zealand that is a big hurdle that we need to overcome."

He said the organisation wanted to create a national eye health survey to gather that data.

According to Blind Low Vision NZ, there are more than 180,000 Kiwis living with vision loss in New Zealand.

This year, the awareness week is focused on young people.

Nearly 60 per cent of people with vision loss in New Zealand are unemployed, so Blind Low Vision NZ developed a dedicated youth programme to allow young people to get an education, technology, and a confidence boost. It also aims to break down barriers in the workforce for people who are blind or have low vision.

The organisation also advocates for access to equitable, quality eye health services and for preventing avoidable vision loss.

"Vision loss can have a devastating impact on people's lives," Mulka said.

"Without made-in-New Zealand data, vision loss remains out of sight and out of mind."