EXPLORING WHY WE INVISIBLE DISABILITY SHAME

Exploring how the media and everyday culture can play a role in shaping our perceptions of disability.

By Stephanie Mantilla & Hong Jiang

“It’s because we can’t see it…”

These are the first six words of a response I got to a question I asked. Looking at just these words it would be easy to believe that I had just asked a kindergarten child why no one in their class believed in the tooth fairy. The ‘I can’t see it so therefore it doesn’t exist’ logic is something you can forgive a young child for having.

However the problem is that I didn’t ask a kindergartener this question, instead I asked disability and media expert, Dr Katie Ellis why do we invisible disability shame? They were the first six words from her response:

“It’s because we can’t see it and we are so used to talking of disability as a physical thing…disability or disability stigma has really related to physical disability as opposed to invisible disabilities…”

 

The reason we expect to see disability

We expect to be able to see disability because “it’s reinforced everywhere. You look around society and all the symbols of disability are of the wheelchair,” explained Ellis. Admittedly, the idea that disability is visible stems from a variety of social and cultural influences not just exclusively the media, as explored in other posts on this blog. Nonetheless, these influences include the media and everyday culture, across various platforms such as television programs, journalism and disability arts. To explore how the media can play a role in shaping the expectation of disability as visible, we were fortunate enough to talk to media and disability experts, Dr Katie Ellis and disability and Professor Gerard Goggin.

The media tells us real disabilities can be seen

“The media is the consistent way that people get an insight or a contact with disability.”

 

Ellis explained that how the media plays a role in why we expect disabilities to be visible, which problematically leads to the exclusion of invisible disabilities. “Invisible disabilities are not something we can see visually, yet the media tend to try to communicate messages about disability visually,” she explained. However, what is perhaps even more concerning is the way that the media have dealt with the issue:

“Something I found in my PhD, was that even when they were wanting to have characters with invisible disabilities, there was some kind of physical symbol on their body that filmmakers used to communicate this idea that a character was disabled.”

The media uses physical symbols, such as a wheelchair or a walking cane, in order to tell us that the disability the character has is ‘real’. This plays a role in how we often expect to see physical evidence before believing a disability is real.

Surprise, surprise- we’re afraid of being lied to

Ellis also explained how since “right back to the beginning of media” there has been a fear that the media have not dealt with, but instead increased. The fear of the ‘disabled person as a fraud.’ According to Ellis, this fear manifests itself in two ways:

• The fear that a disabled person is trying to take advantage of the system
• The fear that a person is pretending to be disabled to claim something they’re not entitled to

Which perhaps to put bluntly suggests that we’re afraid of being lied to.

As US political scientist, Nancy Hirschmann points out in her article titled Disability rights, social rights and freedom the idea of the ‘disabled person as fraud’ is continually reinforced in the news and in other prominent areas and institutions (e.g. political realm, the medical realm). So much so, that it can cause “anxiety among persons whose disabilities are not readily visible to others.”

This fear of being lied to causes us to treat disabled people like criminals, subjecting them to constant surveillance (in hopes that we can catch them in the act of lying). Although this can have benefits such as catching a ‘shameless benefits scrounger,’ the reality is that the majority of people are not lying about their disability. Goggin aptly noted that this constant surveillance forces people “perform their disability.” However performing a disability that is not visible is a lot more difficult, which is why we are often more doubtful of people who ‘claim’ to have invisible disabilities. This likely plays a role in why we invisible disability shame.

False fear, real repercussions

This fear of being lied to has real repercussions on real people. For example Adela, who like an estimated 2% of Australians, has rheumatoid arthritis (RA) which is an autoimmune disease that attacks the joints and creates mobility issues. Adela, who as a result of her RA, sometimes finds herself unable to walk. She often struggles to convince her work managers that her disability is real and is not just another excuse to pull a sickie, “I’ve heard them tell each other that it’s miraculous how my unbearably sore legs can disappear overnight.” She admits that even her own family have doubted her disability, “it hurts that your own blood need to see a walking stick or you physically in hospital in order for them to believe you.” Faith, who like an estimated 2% of Australians has fibromyalgia syndrome (FMS), a condition that causes chronic pains in the muscles and tendons, also understands the struggle. She often refuses to sit on the disabled seating or ask for a seat even when her feet are in unbearable pain because she is afraid of the reaction she might get from judgmental strangers who “can’t see that I am actually disabled.”

Unfortunately, Faith and Adela are not alone in their struggles. Because the reality is we live in a world where we have accessible parking, bathrooms and lifts but as Ellis described, “what is not accessible is people’s attitudes, particularly around people with invisible disabilities.”

***

To put the issue of invisible disability discrimination into scope, according to the Australian Bureau of Statistics 18.3% of Australians have a disability and according to the Australian Network on Disability 90% of disabilities are invisible. This means that close to 1 in 6 people have an invisible disability. That equates to 3.87 million Australians, a figure that is currently higher that the entire population of Western Australia. So the problem isn’t tiny. It’s huge.

To a point, it all begins with one wrong train of thought that Goggin captured perfectly:

“We often think about disability as being about people’s bodies and deficits or the fact that they might have a particular impairment.”

One wrong train of thought, that each of us has the power to change.