After lawyer and disability advocate Dr Huhana Hickey flew from Auckland to Wellington for work in November, she decided she wouldn’t be flying again.

”It was a bit stressful,” said Hickey, who has Multiple Sclerosis and long-Covid.

”They tried to put me in a seat so far away from the front that it was hurting going down the aisle.”

Wheelchair users can’t take their wheelchair onto a plane, instead they are put into an aisle chair to get to their seat. But it can be painful going down a narrow plane aisle, Hickey said.

Venturing onto a plane takes planning and organisation for every traveller, but for disabled travellers, the demands of flying are much greater.

The effort starts early in the planning process for wheelchair users and others with disability needs, and can be exhausting before even leaving home, disability advocate Kimberly Graham said.

Graham tells of a United States-based disability blogger who prepared for a flight to Aotearoa by not eating the day before, and curbing what he drank so that he wouldn’t need to use the toilet mid-flight.

Others have enemas to prepare for a flight, said Graham who advocates for better facilities for disabled users, as well as helping her adult son Findlay live a fun and inclusive life in a wheelchair.

Travellers with disabilities have to arrive at the airport early to organise equipment and board the plane before other passengers, Graham said. But there’s constant anxiety that specialist equipment, like wheelchairs, will be broken on arrival or not arrive at all.

One traveller lost the battery for her hoist and “couldn’t get in or out of bed without it”, Graham said. Fortunately, someone came forward to lend her a battery for her stay.

Disability Connect chief executive Mike Potter said stories of people arriving at international destinations and staying in the airport until their wheelchair arrives are common.

Despite more disabled people travelling, Potter said airports are not keeping up with the boarding and equipment needs of disabled travellers, and he would like airlines to be more generous in understanding the extra equipment needs of disabled travellers.

Long haul travel presents additional challenges and Potter would like airports to have dedicated spaces for disabled travellers to stretch out on a bed between flights.

“Sitting all day shortens our hamstrings, leading to back pain.”

Both Potter and Graham would like planes to have removable seats so that people can travel in their own wheelchairs.

“We’ve been talking to the airlines and advocating for it for many years,” Graham said

Ed Collett, Air New Zealand’s enable disability employee network lead, said the airline is always looking at what it can do to improve services for disabled customers and is working on an in-flight entertainment system for 787 cabins with an accessible mode to improve the user experience for customers with disabilities.

Long haul 777 and 787 aircraft include larger, accessible restrooms, Collett said

For people with spinal injuries flying 20 hours or more to Europe and beyond, aisle wheelchairs can be used for onboard transfers to bathrooms, Potter said. But they’re uncomfortable and not suitable for everyone.

Toilet access on flights is hazardous at best, so self-management is key, he said – with some travellers using catheter bags which they then have to ask attendants to empty.

And when the flight lands, the travellers with disabilities have to wait for all other passengers to disembark before them.

At the end of one flight, Graham said Findlay was waiting for his wheelchair so he could leave the plane, but it didn’t turn up.

“We had to go down in the food lift to get to the ground.”

And once on the ground, if a wheelchair user needs another person to help transfer them to and from the toilet, they won’t find a suitable toilet in any New Zealand airport, Graham said.

New Zealand’s disability legislation is behind that of the United Kingdom, the United States, Australia and Canada, she said. Accessibility legislation introduced to Parliament in 2022 lacked substance and was not passed under the last government, she said.

Meanwhile, Hickey would love to replace her flight to the capital with a train trip, but accessibility is hard on that mode too, she said.

“We’re not a very progressive country around tourism ideas. You can’t even catch a bus [with disabled access] to go between towns.”