Not Built For Me: Lack of accessible homes leaves disabled people 'without dignity'

Thursday, 17 March 2022

Juliana Carvalho has been a wheelchair user for 20 years. She's an advocate for a universal building code that takes disabled people into account. (Video first published March 2022.)

Disabled people navigate a world that is often not built to suit their needs. In part three of this six-part series, Danielle Clent and Josephine Franks look at how desperately inaccessible Auckland’s houses are.

Juliana Carvalho has used a wheelchair for 20 years. She’s never lived in a house in Aotearoa that was accessible.

She rents, which means most modifications are “makeshift”, ready to be dismantled at the end of a tenancy.

“It’s always so much work,” she says.

Juliana Carvalho has been a wheelchair user for 20 years. She's an advocate for a universal building code that takes into account people living with disabilities. [Image description: Juliana Carvalho sits in her manual wheelchair in the hallway of her east Auckland home. She is wearing a black-and-white polka dot t-shirt, black leggings and black boots.]

* Wheelchair user worries she won't be able to bathe in emergency housing

* The Detail: Thousands of people with disabilities living in unsuitable housing

* Lack of accessible housing left woman showering at work for months

Juliana Carvalho has made her bathroom more accessible, but it’s still a tight squeeze for her wheelchair. [Image description: Juliana Carvalho from the back in her wheelchair, in the doorway of her bathroom. Her chair takes up almost the entire width of the door.]

Carvalho is the lead campaigner for Access Matters and has lupus, an autoimmune disease. When she was 19, a spinal cord inflammation left her paralysed and in a wheelchair.

Her rental in east Auckland is the first home she’s had since moving to New Zealand nine years ago where she can access every room.

Before, she lived in two-storey homes, excluded from everything that happened upstairs.

Even now, she can’t get through the front door, having to go through the garage instead. It’s a squeeze to get through the doorways and cooking means twisting and stretching, because the kitchen isn’t designed for a wheelchair.

Her landlord agreed she could modify the bathroom without needing to change it back when she moves out. It was a relief – but it still meant shelling out $4000 for improvements to a house she doesn’t own.

And they are improvements: everyone can benefit from accessible design, she says. You might be injured or become disabled, you might have children, you might have a disabled friend who wants to visit.

Every time Carvalho leaves the house, she has to think about how accessible her destination is. Staying with her siblings last summer, the bathroom was too narrow for her shower chair, leaving her to toilet in the garage and be carried to the bathtub.

“It’s awful, your privacy, your dignity is gone.

“People don’t realise what we go through because of a lack of accessibility.”

Her family is looking at moving to Tauranga, but when she looks at property listings, “there’s no options”.

Lifemark's Geoff Penrose says universal design isn't more expensive if it’s incorporated from the start. [Image description: A close-up photo of Geoff Penrose against a red-and-white background. He's smiling at the camera and has glasses and blue eyes.]

It’s frustrating to see little change in how New Zealand approaches accessible housing, she says. The sweeping townhouse bill, which will increase the amount of medium-density housing, has been criticised for not requiring developers to build to accessible standards.

“You go out and see brand-new places and houses being built in the same way that will perpetuate lack of accessibility and will perpetuate exclusion, ultimately,” Carvalho says.

Lawyer and disability advocate Dr Huhana Hickey (Tainui, Whakatōhea) agrees a focus on medium- and high-density housing, without requirements around accessibility, is locking people out.

That’s especially the case in some of Auckland’s newer suburbs, such as Botany and East Tāmaki, she says.

This is the most accessible home Juliana Carvalho has had in nine years in New Zealand - and it’s still not perfect. [Image description: Juliana Carvalho in her bedroom, holding the frame above the bed that lets her manoeuvre in and out of bed. She’s in a manual wheelchair and there’s another wheelchair in the foreground.]

“There's an assumption that every single one of [the people in] those houses will never experience a disability.

“Well, when one in 10 experiences a disability, then it's likely someone will acquire one and what then? Do they put in a lift? Will they have to move? And where do they move to?

“If [the disabled person has] built the community there, it very likely means that they're going to have to move away from it.”

According to Lifemark, a division of CCS Disability Action that provides advice around making buildings accessible for people with disabilities, just 2 per cent of homes listed for sale appear to be accessible.

General manager Geoff Penrose says there is a “general lack” of statistics around accessible housing but surveys it has conducted showed it as roughly 1-2 per cent.

Penrose says Lifemark is all about universal design – and encouraging developers to build properties so they are accessible to people with disabilities. This includes having level entries, wider doorways and usable bathrooms.

Including these elements in initial designs doesn’t make a build any more expensive, Penrose says – it’s when it comes to changing an already existing home that makes it expensive.

Leilani Farha investigated New Zealand’s housing crisis, hearing from disabled people forced to live in inaccessible homes. [Image description: Leilani Farha smiles at the camera. Blonde strands of hair frame her face, and her hair is short and brown on top. She wears a blue jumper that matches the colour of the blurred background.]

“If we have a more universally designed environment, we don’t actually disable people.

“We allow people to be people, and we allow people to live independent, good lives, and I think that’s something that when we look at the way in which we build, we haven’t considered that.”

If a home is not accessible for a person with disabilities, a disabled person can apply to the Ministry of Health for help funding modifications. A person has to satisfy eligibility criteria and can only access funding once in their lifetime. If modifications cost more than $8076, the person may be required to put their own money towards costs.

According to the Ministry of Health, in the 2020-2021 financial year, 3304 claims were made nationwide for homes to be modified. A total of 3228 were completed and funded - 578 of these in Auckland.

The ministry said the average basic claim was $1659 while the average complex claim was $16,160.

The most commonly requested modifications were adding handrails (both internally and externally), ramps, level access showers and wider internal doorways.

Just before Covid-19 hit New Zealand’s shores in 2020, then special rapporteur for the United Nations Leilani Farha visited to investigate adequate housing.

In her report, Farha said it was widely recognised that acute groups, such as people with disabilities, were worse off because of the country’s housing crisis.

Farha called the housing issue a “human rights crisis” and said housing that was largely inaccessible for people with disabilities was inconsistent with the “enjoyment of the right to housing”.

The report said Farha met with a number of disabled people who explained that public and private housing was “rarely physically accessible”.

“The refusal of reasonable accommodation appears to be an issue for, in particular, persons living in homes rented on the private market,” the report said.

“For example, one resident who used a wheelchair said that for several years he had lived in a private rental that had stairs to the entrance.

“Another resident told the special rapporteur that she had to shower at work because she could not access the bathroom in her house.”

While offering a number of recommendations to improve housing, Farha said universal design should be incorporated in all housing-related legislation.

Carvalho says it’s hard to put into words what it would mean to have an accessible house, because she’s never experienced it.

“It would be really mind-blowing.”

Disabled people are always problem-solving to live in a world not designed for them, she says.

“If we live in a world that is more accessible I think that will unleash and free our time even more to contribute to society.”