?You can make money out of us?: the disabled people demanding more accessible travel and tourism

For Sarah Clifton-Bligh, the most useful thing to have when you're travelling is an older brother who plays rugby.

Sydney-based Clifton-Bligh is fitter than most 17-year-olds. She's a member of the junior athletics development squad and hopes to make the national team in racing and throwing sports. She has travelled around Australia and the world with her family for holidays and athletics meets.

Clifton-Bligh also has cerebral palsy and uses a wheelchair most of the time. She can do incredible manoeuvres in her chair, and with the aid of ankle-foot orthoses and forearm crutches she can take a few steps - a small thing that makes a vast amount of difference when the family goes places - but too many stairs are an issue.

"The worst place I've been was the New York subway," Clifton-Bligh says. "There are not a lot of lifts in that subway system. There were these metal stairs and there was a platform and then there were another two flights of stairs. It was so bad."

Clifton-Bligh's mother, Meredith Jordan, says "we were very lucky that we had a teenage son who could just fling Sarah over his shoulder and carry her up". "It would be pretty challenging if you were doing it on your own."

One in six people in Australia have a disability - about 4.4 million of us - including half of people aged over 65. Many of those people - at least 44% of them - travel for pleasure. But disabled people routinely struggle to have their access needs met, and trying to organise a trip away comes with significant additional burdens, including a substantial investment of time and energy into extra layers of planning, and often additional costs.

The data on accessible tourism across Australia is patchy. The latest comprehensive research, conducted in 2018 for the Australian Trade and Investment Commission, focused mainly on Victoria and Queensland. It estimated that domestic travellers with access needs numbered some 3.4 million people. And it's not just disabled people, but also their families, friends and carers who are looking for accessible accommodation, experiences and services. As a market, it could be worth up to $8bn.

The commission's research also found Australian tourism providers could being doing much more. Surveys showed 23% of non-travelling disabled people found travel "so stressful it's not worth it" and 22% found it "just too hard".

"There is a lack of useful and accurate information in the public domain that allows disabled people to plan travel," says Dale Reardon, the founder of the accessible travel consultancy Travel For All.

Reardon is blind and usually travels with a guide dog. He has made it his business to help other companies identify and improve their accessibility features and services.

"Lots of accommodation sites want the tick to say they're 'fully accessible', but that's a meaningless phrase," Reardon says. "A property perfect for a blind person may be no good for a person in a wheelchair. It's not all about ramps or guide dogs."

Customer service for someone who is autistic, for example, might require staff having the right training, a flexible attitude and being empowered to bend the rules or make decisions on the spot.

"We're struggling to persuade a lot of businesses that our money is just as good as anyone else's," Reardon says. "Businesses often see accessibility almost as a charitable thing. Whereas we say, you can make as much money out of us as you can from everyone else. And we are very loyal customers."

The challenges with accommodation can be complex. Some places represent themselves as "fully accessible" when they are only partially so. Other places do not communicate their accessibility features at all - a common issue on Airbnb, which allows hosts to list features like grab rails, step-free entrances and step-free bathrooms, but few choose to do so. Disabled people have also reported being turned away from accommodation even when their needs could be met with a few simple, inexpensive compromises.

Air travel can be particularly stressful. Wheelchair users are often required to change out of their own chairs on planes, with the chairs stored as luggage, running the risk of damage to expensive equipment due to mishandling. Toilets on planes are not accessible, with cramped conditions making it difficult for carers to assist, requiring some disabled travellers to fast before flying so they don't need to use the onboard bathrooms.

On the ground, wheelchair accessible taxis can be scarce the further away from the cities you go - and many taxi and Uber drivers refuse people with assistance animals, even though it is illegal to do so.

There's also the question of cost. The national disability insurance scheme funds services it deems "reasonable and necessary" insofar as they are related to a person's disability, but travel, accommodation, food and entertainment don't usually meet those criteria, even though many argue holidays are a health necessity. Those who require a support worker to travel with them usually find themselves footing the bill for an extra person on their trip.

There are restrictions on the disability pension for recipients travelling internationally, with payments cutting off after 28 days out of the country, with some exceptions.

Serena Ovens, the chief executive of the Physical Disability Council of New South Wales, says all this can make the process of going on holiday incredibly stressful.

"If you can imagine having to ask 10, 20 times a day for accessibility adjustments, to have to constantly contact places and explain what your requirements are and have them treated as extraordinary - that's not relaxation," Ovens says. "That's not a holiday."

One of the most persistent issues Clifton-Bligh and her family encounter is the lack of a shower chair.

"You would think that would be something that wouldn't be such a big deal, but it is," Jordan says. "Which is why we just cracked and bought one. It can be taken apart and we take it with us."

Clifton-Bligh says she's mostly been lucky with how she's treated when flying - with the exception of a patronising experience at Dubai airport during a layover some years ago, in which she says she was not allowed to use her chair and was required to stay in a designated holding area, away from the duty-free shopping she'd been looking forward to, under the eye of an ever-present attendant.

Clifton-Bligh has heard other horror stories from the disability community, too. "Sometimes the chairs get damaged on planes," she says.

Jordan adds: "We know people who've been bumped off planes, who've had to crawl down the aisle to the bathrooms."

The key to getting everything to work out, Jordan says, is starting a dialogue early.

"When I book things, I will always send a big email saying this is what it's for, this is what Sarah can do, she has a wheelchair, etc. I send a whole lot of context so I can get as much information about where we're staying before we leave. And once I find somewhere that works, we go back there.

"It's just a matter of trying to do it significantly in advance, making sure you communicate with the accommodation provider and that they know what we want, and then if it's not quite there, making it work."

Reardon urges businesses not to be afraid of the accessible tourism market. "They really are people of all shapes, sizes and abilities. And you probably have people staying with you already that you don't know about who could benefit from extra information or accessibility. Give travellers very detailed information about your property so they can decide for themselves whether it suits their needs."

And don't leave accessibility considerations to the last minute: "Some things that might have been very easy to do in the beginning are very difficult later on."

Ovens argues that investing in accessibility is good business sense.

"For every person with a disability who doesn't travel because of the logistical challenges, you have a family, you have carers, you have friends who did not travel either," she says.