More concerning, they say, is how many emotive posts presented as awareness-raising for disability are actually "like farming" scams, where the pictures are used without the owner's consent as a way to drive traffic to a site. Consumer group Choice has also urged the public to be wary, warning that "unscrupulous marketers" are using emotive images of people with disabilities to gain large followings only to later replace the content with marketing for "dodgy products". "Just stop and think, are you actually helping someone? Would you really stop someone in the street and pray for them if they look different?" Findlay said. "Maybe donate some money if you feel like you have to help. Or talk to someone with a disability. These posts give the impression that we need fixing and that we're suffering ... I don't want people to take pity on me. I lead a really good life."

Findlay, 34, was born with a rare and painful skin condition, ichthyosis, which causes red scaly skin and has no cure. She gets infections easily and sometimes has to be hospitalised, with her whole body bandaged. As she knows all too well, in a society uncomfortable with difference and obsessed with perfection, people with disabilities – particularly visible ones – are invariably viewed either as sentimental symbols of heroism or tragic figures in need of rescuing. In the worst cases they are met with revulsion. Two years ago Findlay's picture went viral when it was uploaded without her consent to the social networking site Reddit​ under the headline "What The F---?" Among the countless comments were those saying she looked like a "lobster", a "glazed donut" and "something that was partially digested by my dog". One user suggested she should be killed with fire. Others offered cures and prayers, saying she couldn't possibly be happy. Reddit did little to address her complaints.

In the past two months, Findlay, who is in touch with people around the world with ichthyosis, complained to Facebook when the images of two children she knows with the condition were stolen and posted with requests for prayers for likes. She and the families who reported it were told the posts did not violate community standards. Carly Findlay does not want your pity or prayers on Facebook. Credit:Justin McManus It is a fate that many people with visible disabilities dread. El Gibbs, a Sydney-based blogger and disability activist who has severe psoriasis, rarely posts pictures of herself online. "People have a strong reaction to how I look. It's on my face and all over my body. I also walk with a stick. Carly's experience is something that I fear," she said.

"It's frustrating that the range of acceptable bodies is so small and that how I look is seen as unusual or weird or disgusting in some people's eyes rather than just a normal variation of the human body." The bigger picture, say those in the disability sector, is the low benchmark society sets for their community. Stella Young, the Melbourne activist who died in December 2014, railed​ against "inspiration porn" – an online phenomenon in which people with disabilities are objectified and applauded for the most basic achievements as a means to inspire the masses to greatness. The famous meme of Paralympic athlete Oscar Pistorius​ running alongside a young girl with Down syndrome with the caption "The only disability is a bad attitude" prompted Young to point out in a TED talk that went viral that "No amount of smiling at a flight of stairs has ever made it turn into a ramp". Stella Young. 'No amount of smiling at a flight of stairs has ever made it turn into a ramp.' Credit:ABC

Craig Wallace, president of People with Disability Australia, said for many people the real challenge was not their condition but the external environment. "If we want to portray things on social media we should be showcasing the restaurant toilets that are inaccessible, or the spaces that aren't made well, we should be talking about the lack of support and employment opportunities," he said. "These kind of posts that ask people to share pictures of people with disabilities without their permission and also prayers for likes don't do anything to improve the lives of people with disabilities they only improve for a brief moment the self esteem of the people who are viewing them on social media." Disability and queer rights activist Jax Jacki Brown, said society needs to shift its medical view of disability as a tragedy that needs to be corrected. She urged allies to take action rather than view the disabled as objects of pity.

"It would be good if more non-disabled people would actually do access audits of their local restaurants, buildings, places of employment and actually start engaging with the people in those spaces to demand better access," Brown said. Disability activist Jax Jacki Brown urges people not to buy into online "inspiration porn" but to take real action. "Go out into the world, take a look around and see the barriers that people with disability face, both in terms of physical access to space but also in terms of examining your prejudices or your views of what disability means so that you become truly accepting and understanding." Advocates argue that part of the cultural shift around our view of people with disabilities must be an end to deifying​ them for leading ordinary lives. When Michelle Payne last year became the first female jockey to win the Melbourne Cup her brother Stevie also shot to fame, being lauded as a "joyous beacon for the life those afflicted with Down syndrome can lead."

"Be inspired by somebody not because they're disabled but because they're doing something extraordinary," Findlay said. "I don't want to be called inspiring just for getting up and going to work." jstark@fairfaxmedia.com.au Follow Jill on Twitter