HOW many people with spinal cord injuries do you know? How do you feel when you see someone using a wheelchair?
Those are just a couple of the questions advocates are encouraging the able-bodied to ask themselves this Spinal Cord Injury Awareness Week.
Susan Wood, the community engagement lead at Spinal Cord Injuries Australia, has lived experience of paraplegia since birth.
She denounces the invisibilisation, ignorance and misplaced sympathy that reign around disability in our communities.
“There are things society doesn’t know about disability because we’re never represented,” Ms Wood said.
“The only times we’re represented is at the Paralympics or if we’re talking about disability issues.
“But when we’re not represented in all facets of society, from being able to get jobs and climb the career ladder to just being able to get out and about, it really becomes a problem.”
Ms Wood said the global ‘We The 15’ campaign released to coincide with both Spinal Cord Injuries Week and the Tokyo Paralympics is an important step towards ending the discrimination of people with disabilities.
“[The campaign] is about all the times someone calls somebody with a disability an ‘inspiration,’ or ‘brave,’ or says something that seems like it comes from a really good place but in actual fact is a detriment to people with a disability,” she said.
“I’ve been congratulated for going shopping, and a part of you is like: ‘Why?’
“What is it about me that makes you want to applaud me?
“I just want to be like everybody else around.”
Ms Wood said substance must follow on from the hype around inclusion, despite hailing ‘We The 15’ as an amazing campaign.
“Many times the access is not there,” she said.
“That includes job opportunities [and] representation… I think people assume it might be too hard work to integrate people with disabilities.
“But how are you going to be able to do it unless you give it a go?”
Along with her work at SCIA, Ms Wood also hosts a successful podcast, Have the Nerve.
She’s clear about what true inclusion and representation mean to her.
“Wouldn’t it be great if people didn’t see us as ‘inspiring,’ but just as people?,” she asked.
“Just because we have other things going on in our lives doesn’t mean we’re ‘special’ in any way.
“Wouldn’t it be great if suddenly we had all these people with disabilities in our face in the media, all the time – that would integrate it, so one day it wouldn’t be such an issue or it wouldn’t be so surprising.”
Antonio Vecchio, consumer cngagement lead at the Spinal Research Institute, is also a wheelchair user like Ms Wood.
Mr Vecchio’s message this Spinal Cord Injury Awareness Week is directly to people in the spinal cord injuries community, to encourage them to live life to the fullest.
“For me the biggest emphasis for people with spinal cord injuries is just to get out there and to engage in life at whatever level they can,” he said.
“I think people with spinal cord injuries need to take the risk of applying for a job, of starting a sport, of catching up with friends.
“It’s great that there’s community awareness, but sometimes we need to take risks ourselves to get ourselves out there.”
Mr Vecchio is firm that better quality of life starts with people with spinal cord injuries themselves.
Confidence on their part rather than anger can be a powerful form of advocacy.
“I very rarely get angry at things like disabled parking, because I just don’t see the point: I would rather have people learn from me,” he said.
“So that’s what I think is important.
“As a spinal cord injury community we put ourselves out there, because that’s the best form of advocacy.
“Getting out there and showing the community.”
CEO of the Spinal Research Institute Kristine Hendry highlighted the importance of the innovative Consumer Engagement program that Mr Vecchio leads.
It aims to connect people with lived experience of spinal cord injuries to researchers in order to deliver outcomes with the greatest impact.
“A spinal cord injury is more than paralysis and impaired mobility,” Ms Hendry said.
“By being more involved in the research process, people with lived experience will have a direct say in what matters to them most.”
Spinal Life Australia is another organisation working to improve the quality of life of people with spinal cord injuries.
CEO Mark Townend said that Spinal Life’s focus during Spinal Cord Injury Awareness Week is on the benefits of accessibility to wheelchair users and to businesses.
According to research carried out by Deloitte Access Economics, the economic dividend of Australia becoming a more inclusive society could reach as high as $12.7 billion annually.
“This week-long campaign hopes to shine a light on ‘Good Access = Good Business’ and we encourage businesses to jump on board, as they use COVID lockdowns to refurbish, reconsider their business models, or think about how they serve their customers in the future,” Mr Townend said.
Lachy Chapman, a person with a disability who uses a wheelchair, explained that many in his situation share recommendations of accessible businesses in order to avoid surprises and embarrassment.
“Being able to access businesses like the rest of the community makes the daily challenges of living with a disability a little less troublesome,” he said.