Not Built For Me: Auckland mum's sadness as disabled son excluded from society

Friday, 18 March 2022

North Shore resident Kimberly Graham, whose 17-year-old son Finlay Butcher has cerebral palsy, says more often than not, the inaccessibility of Auckland prevents the family from getting out and about.

Disabled people navigate a world that is often not built to suit their needs. In part two of this six-part series, Caroline Williams talks to an Auckland mother about the lack of accessible spaces for her son.

Kimberly Graham pulls up to Long Bay Regional Park’s Variety Playground in her “massive” van, adapted with a hoist to lift her 17-year-old son Finlay Butcher into his wheelchair.

The “all abilities” playground is one of few in the Auckland region with features accessible to wheelchair users like Finlay, who has athetoid cerebral palsy and is non-verbal.

Upon meeting with Stuff for an interview about accessibility in Auckland, Graham immediately notices the narrowness of one of the playground’s three mobility car parks. That means they aren’t accessible to all mobility parking permit holders, especially those who exit their vehicles from the side, she says.

Kimberly Graham says her son, 17-year-old Finlay Butcher, often feels sad when he can’t be included in an activity due to it not being accessible. [Image description: Kimberly Graham and her son Finlay Butcher in the shade of a large tree in an Auckland park. Graham is smiling at Finlay, who is in a motorised wheelchair.]

* More than just ramps: The ironic journey to making an accessible podcast

* High-rise housing will exclude disabled people unless rules improve – critics

Not long after, a woman in a van – which does not have a mobility parking permit on display – takes the park to offload her children. Noticing Graham’s genuine need for the park, she apologises as she leaves.

A bathroom at Westfield Newmarket is the only one in the whole of Auckland that Kimberly Graham has found that fully accommodates her son, Finlay Butcher. [Image description: The exterior of Westfield Newmarket mall on a sunny day. Groups of people are standing, chatting, and walking out the front of the sliding doors.]

It’s situations like these that highlight the challenges of getting out and about with a disabled child, when the world is built in a way which assumes everyone’s abilities are equal, Graham says.

One of Finlay’s favourite activities is swimming, as the water is one of few environments where his body feels comfortable and at ease from muscle stress and spasticity caused by his cerebral palsy.

“He just goes all relaxed. To have him floating is just lovely, it’s a really nice feeling,” Graham says.

But chances for Finlay to experience that relief don’t come easily, as none of Auckland’s pools have the changing room facilities to adequately serve his needs.

In fact, Graham has only come across one bathroom in the whole of Auckland that easily and fully accommodates Finlay – a Changing Places bathroom at Westfield Newmarket. It includes an adult changing table, with a hoist that can lift people with higher needs, as well as a height-adjustable toilet and seat.

Finlay Butcher, 17, enjoys swimming, but Auckland lacks pools with changing room facilities that meet his needs. [Image description: Finlay Butcher sits in his wheelchair at a park, with a playground and parked cars in the background. Finlay is wearing a black t-shirt and black shorts.]

Because bathrooms like this are not widespread, Graham has injured herself while lifting Finlay in and out of his wheelchair to change his nappy on the floor, because there has been no other option.

“It sounds awful, but I’ve had him laid across a windowsill in a disability toilet before because I couldn’t get him on the floor. The floor space wasn’t enough.”

Graham and Finlay felt like they had won the lottery after discovering Coastlands Aquatic Centre in Paraparaumu, which has a disabled changing room equipped with a ceiling hoist and changing table for those with higher needs, which made swimming with Finlay “actually quite easy”.

“It made us feel welcome. It made us feel counted,” Graham says.

“I felt over the moon.”

Disabled Persons Assembly of New Zealand chief executive Prudence Walker says disabled people should be able to get out and about without having to ask for help to navigate barriers. [Image description: Prudence Walker sits on her mobility scooter in a public square. She is smiling and her bright pink hair is caught in the wind. She is wearing an orange-and-black striped shirt and a purple cardigan.]

But back at home, the Devonport-based family, including Finlay’s siblings Rosie, 14, and Lachie, 11, often choose to stay at home or keep their trips short, due to Auckland’s poor level of accessibility.

When they do go out as a family, there is always the risk they may be split up if an activity, such as going to the beach, can’t be accessed by wheelchair.

“Finlay often gets upset, because one minute everyone’s there, next minute they’re all gone. It’s hard to explain to him the reasons why that happens,” Graham says.

“We do get used to it, but I don’t think he ever gets used to it. I’ve tried to get over that sadness of not being able to have him involved in lots of things.”

Disabled Persons Assembly of New Zealand chief executive Prudence Walker says it’s likely “really common” for disabled people to feel like they can't go out due to places not being accessible.

The Albany Stadium Pool features pool ramps and hoists, but there is no dedicated changing space for disabled people. [Image description: An exterior shot of Albany Stadium Pool on a sunny day. It’s a large silver building with big glass windows. A car is parked in a mobility parking space out the front.]

Walker, who uses a mobility scooter, says for disabled people there is a lot more planning required to go out, including whether the space will be accessible enough to navigate or – particularly for those with higher needs – if they’ll be able to use a bathroom.

“Even if [disabled] people go out as much as anyone else, there’s still an extra layer in there. That’s a barrier in itself, knowing that the world is generally not very accessible.”

“There’s so much mental energy and planning that goes into things related to accessibility, but before you actually even face the accessibility or not.”

One of Auckland Council’s newer swimming facilities, the Albany Stadium Pool, was built without a dedicated changing area for disabled patrons. Instead, disabled people may use the family changing rooms, which don’t have a toilet, hoist or adult changing table.

Lifemark general manager Geoff Penrose says it’s cheaper to incorporate universal design into a new building than it is to make an existing building accessible. [Image description: A close-up of Geoff Penrose smiling at the camera in front of a red-and-white background. He has blue eyes and wears glasses.]

Graham keenly followed news reports on the pool’s development, and was left disappointed when it eventually opened in 2017.

“If you can even try and imagine anyone trying to use that from a disability point of view, it’s just not going to work,” she says.

Additionally, the disabled changing room in the gym upstairs has signage which implies anyone may use it, meaning it could be occupied by an able-bodied person when needed by a disabled person.

Graham says she feels Auckland Council has missed an opportunity to act as a role model when it comes to building modern, accessible facilities.

“It’s like it’s an afterthought even, it’s like you don’t feature.”

When Kimberly Graham and her son Finlay met with Stuff for an interview, she immediately pointed out that the two outside mobility car parks at Long Bay Regional Park were not wide enough for some disabled permit holders. [Image description: A birds-eye photo of three mobility parking spots, surrounded by bollards. It’s a sunny day and the shadows of trees fall across the car park and nearby grass.]

Auckland Council head of active recreation Dave Stewart says the pool was built to achieve good accessibility outcomes, with features such as pool ramps for water wheelchairs and pool hoists. However, there are some aspects of the facility which require improvement.

“We acknowledge that the absence of this dedicated changing space is not ideal and funding is in place to have a new accessible changing room built in 2022 to increase the accessibility of the facility.”

It is expected the changing room, to be built during the first half of 2022, will cost about $205,000.

Universal design is the practice of designing buildings and spaces to be accessible to all people, regardless of disability. Geoff Penrose, the general manager of universal design consultation company Lifemark, says the cost of incorporating universal design into a new build is about 1 per cent of the total build cost.

However, the cost of retrofitting an existing structure to include elements of universal design means spending about 10 times what it would originally cost.

Graham believes Finlay’s life would be more equitable if Auckland was built to meet the needs of all people, no matter their ability. [Image description: Kimberly Graham and her son Finlay Butcher in the shade of a large tree at Long Bay Regional Park. Kimberly is kissing Finlay on the cheek as he looks into the distance.]

“It’s essentially the cost of not thinking about these things early on,” Penrose says.

'If they’re done at the time of the build, the cost is quite minor, but to do it later is quite significant.'

If the right process had been followed when the pool was built – including consulting with representatives from the disability community, or an organisation like Lifemark, which is a division of charity CCS Disability Action – it’s likely those elements wouldn’t have been missed, he says.

The New Zealand Standard 4121 sets the minimum accessibility standards for buildings and their facilities, driveways, car parks and access ways for disabled people under the Building Act, but Penrose says this standard – created in 2001 – is out of date.

“It’s not a modern way to address the needs of a modern, inclusive society.”

For example, having an accessible door that is not at the building’s main entrance, such as a back door, or an entrance where a disabled person requires help to get through, does not allow them the same independence as everyone else, he says.

Graham says her family also face barriers while on the go – both in their own vehicle and on public transport.

The family’s high-top van requires parking space behind it, so the rear hoist can lower Finlay to and from his wheelchair. However, mobility parks often do not have that space, meaning if Graham cannot reverse into the car park and lower Finlay onto the footpath, he will have to be lowered onto the road.

Not only does this block the road, it can be unsafe, Graham says.

“It takes you a good five to eight minutes to get out of a rear entry hoist. It’s not like you’re just doing it, jumping out and that’s it done.”

The New Zealand Standard 4121 sets the minimum size of an accessible car park at 3.5 metres wide and 5m long – but goes on to say this isn't suitable for vehicles with rear hoists, which require an additional length of 1m to 1.3m.

“It makes our parking really limited. We rely on certain mobility parks to be almost over standard, because the standards aren’t that good,” Graham says.

“We kind of need a combination of different mobility parks. We need wider parks, and we need areas where we can transfer either from the driver’s side, the passenger’s side or the rear entry.”

Auckland Transport spokeswoman Natalie Polley says the council-controlled organisation is currently surveying the region’s car parks, so it can design a map of all spaces, including mobility parks, for the public.

Mobility parks are wider for easier entry and exit of vehicles for disabled people as per the standards, she says.

Her colleague, Briar Hubbard, adds Auckland Transport’s approximately 150 mobility parks are angle spaces, which means “a rear hoist can be easily managed, due to the fact that there are no obstructions at the rear”.

Emissions-conscious Graham would also like to use public transport more, as the family has the Devonport Ferry Terminal at its doorstep – but getting onto the ferries can be “hit and miss”.

“Some [ferries] are small, they haven’t got the space for us, they put a bin in the excess wheelchair space, or the ramps are too curved for us to get on.”

Sometimes boarding requires Graham to give Finlay and his power chair a “run up” to the top of the ramp, which can be “really scary”, she says.

“And it attracts attention. It's something that you don’t really want all the time.

“You just want to be able to just effortlessly get onto the ferry and then get off the ferry without worrying and being anxious about how you’re going to get off the other end.”

Polley says the portable gangways at the ferry terminals are modelled on that of the “successful” Sydney Harbour ferries, and informed by feedback from Auckland Transport’s Public Transport Accessibility Group, which includes representatives from disability organisations.

“They are wider, with an improved gradient and handrails.”

Future ferry fleets will be designed to provide the “best possible experience and safety” for people with mobility challenges, including with fewer barriers for people to get onto and move about the ferries.

Walker says it is rare for infrastructure to go above and beyond what is legally required in terms of accessibility.

“People try and get away with the bare minimum often, unless they actually have an interest in making it accessible, like properly accessible.”

Many access struggles faced by disabled people are likely to go unnoticed, Walker says, as not all disabilities are obvious, and not everyone with a disability likes to ask for help.

“True accessibility is about not having those barriers in place, not having to do all the thinking to be able to visit somewhere and alert someone to the fact you’re there. Just being able to do things as everyone visiting that place is.”

Walker also believes it is short-sighted for designers to not include accessible features in their buildings, as while the building’s original owners may not have the need for them, the next owners or business occupying the building might.

She adds that people’s needs may change with time, such as if they require mobility assistance as they age, or if they become disabled from an injury.

If things were made accessible in the first place, Graham believes her son’s life would be more equitable.

“If we all started using those universal design principles around a lifetime, in everything, it’s just going to create a more equitable life. People are going to be able to get out there, use it, and feel included.”