Every single day. That's how often Juliana Carvalho experienced barriers to normal living, simply because she's in a wheelchair.
Carvalho is not one of life's complainers either. She's always engaged with life at full speed. Even after the event that took away her ability to walk at the age of 19.
Carvalho was living in Brazil when she suffered an attack on her nervous system caused by Lupus. She'd walked into a hospital complaining of pain. Two days later she was paralysed from the waist down and had to leave in a wheelchair.
But rather than letting it get her down, she saw her misfortune as an opportunity. She got a job as a TV presenter, she wrote a book that was raved about in Marie Claire magazine.
Around that time, she fell in love with New Zealand after visiting her brother who'd moved here to live. It had been an easy shift for her brother but it was a different case for Carvalho. It took seven years, and tens of thousands of dollars. She says the delays were all due to the fact she had a disability.
And that was just the start.
Carvalho lives in Papamoa in the Bay of Plenty. She knows that Tauranga City Council works hard to make the city liveable for all. It has a disability advisory group and an accessibility action and investment plan.
That has led to numerous initiatives such as accessible changing facilities, picnic tables and events. But despite these efforts, Carvalho still felt her life is limited, which she finds incredibly frustrating.
"I want to go to my local pub and be able to go in to the front door and not have to ask 'do you have a back door so I can come in?' I want to go to the local gym but they say 'sorry there's nothing we can do because the classes are upstairs'. When my niece was younger, I wanted to push her in a swing in the local playground, but I used to have to ask someone else to do it for me."
She can't access the swing area because of a wooden border around it that her wheelchair can't get over.
Carvalho remembered what it was like as an able bodied person being able to do all of these things without giving it a second thought.
She said as soon as she had to use a wheelchair "I realised many rights just disappeared, places I couldn't go, things I couldn't do. It's crazy, I'm still the same person."
Beach access difficult
Other daily frustrations include not being able to access the beach.
Tauranga City Council has funded two beach mats which allow access to hard sand over the soft sand.
They're perfect for people like Carvalho but there isn't one in Papamoa despite the miles of hard sand she could traverse if only she could get there.
The council told Fair Go it does have other mats planned.
There are also big issues like accommodation. When Carvalho arrived she searched for somewhere to rent but there was no accessible housing available.
She ended up in a room at a place her brother had bought to convert into a dental practice.
It had a ramp but no accessible shower. So for over a year she had to shower with a hose in the garage. She felt so embarrassed about this she didn't want to show us where it was.
She's now had funding for a portable shower in her room. She said it was expensive and while she's incredibly grateful for help with funding, she thought that kind of money would be much better spent on building houses that are based on universal design.
Universal design refers to builds that are accessible for everyone.
There's a common theme running through all these problems. It's the lack of national standards.
It's something Carvalho had campaigned for here in New Zealand for years. She was excited about Labour's proposed Accessibility Bill, only to be disappointed when the final proposal suggested establishing a disability committee that could advise other departments rather than having any enforcement powers itself.
Before the change in government, Fair Go raised this with the former Disability Minister Priyanka Radhakrishnan. She backed the bill and said it had the power to change legislation by allowing the committee to decide where change was needed and making sure recommendations were tabled in the house, with the committee holding the appropriate government department to account.
She added that giving the Ministry for Disability its own legislative powers would be confusing and that the suggested approach of advising other departments on changes to legislation was the only one that would really work.
But Carvalho believed that relies too much on the persuasive skills of a Minister for Disability. She also believed it will be far too easy for various departments to dismiss the changes the committee asks for.
Carvalho is hopeful the new government will strengthen the bill and give it some teeth. She believed it will be a win-win for everyone, creating new jobs and allowing many disabled people to be fully functional in their communities rather than feeling held back.
"The only way forward is progress and this country needs to catch up with others."
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