Not everyone who uses a wheelchair is paralysed. This is what ambulatory users want you to know

When strangers spot Shae Mankey standing up from her wheelchair in public, she knows how it looks.

She also knows that might be all the evidence they need to conclude she doesn't "really need" the wheelchair.

That couldn't be further from the truth.

"If I didn't have a chair, I don't think that I would go out," Shae said.

The 42-year-old is an ambulatory wheelchair user — someone with some ability to stand or walk, but who also often uses a wheelchair to get around.

Shae's facioscapulohumeral muscular dystrophy (FSHD) — a rare degenerative disease affecting face, shoulder, arm and leg muscles — means navigating busy places without a chair isn't only much harder for her, it's unsafe.

"I suffer numbness in the legs and [worry] if there's a lot of crowds I may fall over. There's a lot of issues now with me being able to get up off the ground on my own," she said.

"I also get a lot of lower back pain that I would describe as excruciating. I'm not very quick ... so it's just easier to be able to utilise the chair and get what I need to get done safely."

Other times, particularly when Shae's in quieter, more controlled settings such as the bank or her own home, walking is easier and more manageable.

"I don't use the chair because I've given up physically. I use it so that I can maintain what I have and still enjoy life," she said.

It's a similar story for Kate Pern, an ambulatory wheelchair user who lives with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating multi-system illness that gets worse the more you try to push through it.

Many ambulatory wheelchair users, such as Kate, have dynamic disabilities, which means their ability to be active can be different day-to-day.

Kate is "predominantly housebound" and uses her non-powered chair in situations where a friend can help push her along.

The 36-year-old said being able to remain seated while out of the house prevented her from overexerting herself and ending up "even more disabled".

Essentially, it's given her parts of her life back.

"My friend recently offered to take me to [an art gallery] and it was so cool to be able to just enjoy all the art and not be really sick afterwards," she said.

"Some people, when they think of a wheelchair ... it's a confining thing, but that's hasn't been my experience — it's been liberating."

Stigma and judgement are common

There is no data on the number of ambulatory wheelchair users in Australia, but it's estimated one in three wheelchair users in the United Kingdom are ambulatory.

Many ambulatory wheelchair users report being judged, stigmatised or accused of faking their disabilities to cheat their way into support.

Shae said she was regularly accosted at accessible car parks when standing up from her wheelchair to transfer into the car driver's seat.

She's been grunted and stared at, had her car window knocked on aggressively, and been told to leave accessible parking spots "for those who really needed it."

"People often assume that someone who can walk should always walk," Shae said.

"It's not nice to feel like you're being shamed or judged for using a mobility aid or having people look at you like you're an oddity ... rather than just letting you be."

Prejudice around who "should" and "shouldn't" use a wheelchair often leads to many ambulatory users to develop impostor syndrome.

Kate said she resisted getting a wheelchair "for a really long time".

"It felt like I wasn't allowed to, and I wasn't disabled 'enough' to use one because I could walk," she said.

"But then someone said to me, 'do you know what? People who don't need wheelchairs don't fantasise about using one'."

'If they need it, let them use it'

Progress has been made, but advocates say there is still a long way to go before ambulatory wheelchair use becomes normalised.

In recent years the #AmbulatoryWheelchairUsersExist hashtag has been used on social media to build visibility and understanding, as have social media videos aiming to break down the stigma.

Shae would like to see more awareness about ambulatory wheelchair users and the many different reasons people use mobility aids.

"If people need an aid, let them use it. If they don't, that's great as well, but ... don't ever pass judgement on that," she said.

"Whether someone looks like they're disabled or they don't, there should be more education as to why someone might need to utilise a wheelchair, rather than put up with the pain that they're feeling or just missing out completely."

Kate said wheelchairs were not exclusively for those with paraplegia or limb difference.

"They are for whoever needs them," she said.

"If you ever see someone using a wheelchair, there's a good reason why they're using one."