Inclusion and representation matter
This year’s theme for Disability Inclusion Week (20 – 24 September) is Invisible Disabilities. PhD student Stephanie Mantilla and first-year student Katie Barton reflect on their experiences studying and living with invisible disabilities.
What comes to mind when you think of the word ‘disability’? Is it someone in a wheelchair, with a guide dog? These images pop up because they are easily visible and often what’s portrayed in the media. In reality, 90% of the 4.4 million people with disabilities in Australia are living with an invisible disability. That’s a big chunk of disabilities we don’t see.
Disability Inclusion Week is a celebration of the progress we have achieved to ensure everyone is granted equal access to opportunities, but more importantly, it’s a reminder that there is still a long way to go towards total inclusion.
This year’s theme for Disability Inclusion Week is Invisible Disabilities – it’s a call to action for greater representation and inclusion.
‘An invisible disability is any long-term impairment, health condition or illness that isn’t immediately visible in most everyday circumstances, examples include depression, fibromyalgia, or lupus,’ says Stephanie Mantilla, who is pursuing her PhD on invisible disabilities at the University's Centre for Disability Research and Policy.
Some of the common misconceptions about invisible disabilities summarised by Stephanie include:
Given the prevalence of invisible disabilities, Stephanie hopes to debunk these myths and broaden our views about people living with invisible disabilities and their different experiences.
‘Disability Inclusion Week presents us all with the opportunity to promote open conversations about the variety and spectrum of invisible disabilities in order to create a more inclusive campus,’ says Katie Barton, a first-year Bachelor of Science and Advanced Studies student studying through the Taronga Wildlife Conservation stream.
Those with an invisible disability are commonly not recognised, stigmatised or outcast, and I think this week provides us with a chance to educate ourselves and shift the widespread misunderstanding of invisible disabilities within our community.
Katie has experienced multiple mental illnesses through her adolescence, and is now a mental health speaker for batyr – a youth preventative mental health organisation. The support from the University's Inclusion and Disability Services was a huge reason why Katie chose to study at the University of Sydney.
‘Accessing the disability support was a relatively simple process. After applying, I had a consultation with one of the Inclusion and Disability Services officers to discuss my studies,’ says Katie. She now meets with her officer regularly to work out alternative arrangements and make updates to her academic plan to support her to meet the requirements of her degree.
‘I encourage those with an invisible disability to not feel ashamed or unworthy of asking for support from Inclusion and Disability Services. For me, having an academic plan and support from my officer has made my first year of university more manageable, supportive and enjoyable,’ Katie says.
Stephanie’s PhD thesis specifically looks at the representation of people with (in)visible disability in government health advice on Instagram and how to improve it.
‘People with disability were commonly represented as inspirational people in wheelchairs conforming to the problematic trope of people with disability as ‘inspiration porn’,’ Stephanie says, ‘It’s rather tokenistic.’
‘It’s crucial that there are more authentic and rich representations of people with disability that don’t reduce them down to a stereotype. It’d also be great to see people with different types of disabilities (both visible and invisible) represented.’
Stephanie has watched first-hand how the invisibility of her mum’s disabilities has affected the way she is treated by other people, and how a negative experience can have a lasting impact.
‘I used to fear that if someone found out my disability, they would perceive me differently, of lesser value or a burden because of the stigmatised connotations associated with my diagnosis and past responses I had received after telling people,’ shares Katie.
In our everyday lives, there are small things we can do to prevent negative experiences from being inflicted on others, it starts with raising awareness, and educating one another.
‘Adopting a flexible and empathetic approach towards all interactions with your peers is a good place to start.’
A big part of being more inclusive of people with an invisible disability involves trying to be kind, understanding and supportive of each other.
Stephanie reminds us that not all people with invisible disabilities will feel comfortable revealing that they have a disability, and that they shouldn’t feel pressurised to disclose it either. She shares with us some strategies we can adopt daily.
Some day-to-day examples include:
‘If someone discloses to you that they have an invisible disability - educate yourself, do some research on it and create a safe and respectful space for the person to share their personal experiences with you if they feel comfortable. Ask questions rather than assuming how the person is affected, ask if there are ways you can support them, and thank them for sharing with you,’ Katie says.
To hear from Stephanie and Katie, register for the panel event ‘How invisible is an invisible disability?’ next Tuesday 21 September, hosted by Inclusion and Disability Services.
To learn more about the University's Inclusion and Disability Services, and to access further resources, please visit our Canvas site.