The Hidden Initiative: No more mystery around disability at Griffith
A student-designed and led project at Griffith University is spreading awareness and understanding of ‘invisible’ disabilities, mental and physical health conditions.
The Hidden Initiative began at Griffith University in 2020 and was launched as a project following the university’s involvement in the Millennium Fellowship Class of 2020.
Griffith was the only UN Millennium Fellows Campus for 2020 in the Asia-Pacific, said Victoria Menzies, Manager, Griffith Honours College.
Victoria attended the Bangkok summit with the student leaders and helped them develop their focus to create The Hidden Initiative.
“My role was pivotal in Griffith’s success for the students in understanding what the program is, what they are committing to being able to connect and work with other students. Millennium Fellows cannot really exist in a university without a staff champion who can facilitate the group”, she explained, adding that the role of the staff member is to coach students in putting their ideas into action.
The project’s founders, D'Arcy Smith and Claire Doherty, explained: “During a workshop at the 2nd Peace Summit of Emerging Young Leaders in Bangkok in early 2020, we were asked to consider an issue within our communities that doesn’t receive enough recognition or discussion, which led to the conversation of the prevalence of disabilities, mental health conditions and medical conditions that people are challenged by that one might not realise they’re experiencing.”
The friends realised they had both been challenged by conditions that neither of them had been aware of up until that point.
“We shared a frustration about the stigma we felt with our conditions and how hard it felt to explain it to people and feel genuinely understood, as they’re not challenges that would be easily recognised with the naked eye. Discussing this concept further, we realised that this was an opportunity for us to take the initiative in bringing this issue to the forefront, promoting meaningful discussion and understanding whilst supporting local organisations that make such a meaningful impact in people’s lives and thus, The Hidden Initiative was born.”
Through discussion and increasing visibility of support services, The Hidden Initiative aims to minimise stigmas and feelings of shame around hidden conditions. At Griffith, the project aimed to raise funds for support groups while also raising awareness.
To date, the project has brought in $1500.
The project team launched The Hidden Initiative as a student-led membership organisation at Griffith, which allowed for transparency in funding to ensure that the funds raised go directly to partner organisations. So far, fundraising activities include stalls on the university’s campus featuring the group’s iconic prize wheel; membership fees; and a GoFundMe page.
Two local organisations are partnered with every six months, so that The Hidden Initiative can support a wide variety of organisations across a range of hidden conditions.
The pair believes the project has been extremely beneficial to students with disabilities so far through its promotion of disabilities of all types. The Hidden Initiative provides students experiencing these conditions with a safe space to share their stories and experiences, and D’Arcy and Claire said the discussions had been “incredibly heart-warming”.
“These students have been kind enough to share their stories and those of their families with us and have shared their support and excitement of discussing issues that stigmas and a lack of awareness present,” the student leaders said.
The duo have their own stories too; D’Arcy’s passion for hidden disabilities is fuelled by her diagnosis with polycystic ovarian syndrome (PCOS) at the age of 14.
“This condition has various physical symptoms but more than anything else, I’ve struggled most with the condition’s impact on my mental health. Research has shown that those with PCOS are at a higher risk of being diagnosed with depression, anxiety, bipolar disorder, eating disorders, and are at a higher risk of suicide. I’d spent years putting on a brave face and concealing my struggles because I didn’t believe that those around me would understand, so I felt that there was no point in trying to explain it. Only through my experiences with The Hidden Initiative and the dialogue that it inspired did I realise that it’s not that people couldn’t understand, I simply wasn’t giving them the chance to,” she said.
“It’s not always easy to be vulnerable with others in sharing my experiences, but I’ve found that the more people I confide in, the more comfortable I am talking about it and have experienced others feeling more comfortable in opening up about their struggles in return. This is why the vision behind The Hidden Initiative is so close to my heart. We can never assume what a person may be going through. Instead, we can be compassionate, understanding and provide support to those that are brave enough to share their story.”
Likewise, Claire was diagnosed with auditory processing disorder at the age of six but not informed until her late high school years. Auditory processing disorder affects around 5% of children, but that number may be higher due to children being misdiagnosed.
Claire said she has difficulty understanding speech especially in noisy environments or when more than one person is speaking. She has learned her own adjustment tools like reading body language, lips and how to read the room. “I like to think of that as a strength that came out of having this hearing condition. The Hidden Initiative is a platform that allows awareness to be raised on hidden conditions as a majority of the time people don’t understand when you deviate from being ‘normal’ if you look visually fine,” she said.
As well as helping others, the project has helped its two leaders to develop their networks and learn new skills that will stand them in good stead as they progress to a career, including self-confidence and leadership skills. Working with local organisations has allowed them to learn the basics of things like self-marketing, contract writing and governance.
As a result of their experience in forming successful partnerships, Claire and D’Arcy were invited to join the Literacy Foundation for Children as board members, and have been actively contributing to the foundation’s activities since late 2020.
“This is a very unique experience that we likely would have not had access to without our experiences with The Hidden Initiative and the skills that we have developed throughout our engagement with the project,” the pair said.
The Hidden Initiative has developed a loyal following on Facebook, Instagram and its donation page, and a serendipitous consequence of its development has been the use of social media to promote advocacy for people with disabilities. Through social media, the team can promote their discussion of hidden disabilities to a wider audience. Now, that audience includes supporters from across the globe.
“Whilst social media is widely recognised as playing a role in perpetuating unrealistic standards of beauty, lifestyle, careers and many other aspects of life and who we are, it also served as a valuable platform in which to dispel these standards and raise awareness to important social issues,” the founders explained.
“Social media has been paramount in allowing people to share their own experiences and journeys with a wider audience. Through our online platforms, including Facebook and Instagram, The Hidden Initiative raises awareness, promotes discussion and raises donations to support individuals with hidden disabilities and mental and/or physical health conditions that aren’t apparent to the naked eye. Social media allows us to shine a light on hidden conditions that can have a significant impact on an individual’s life, from employment and day to day activities, to relationships and social lives.”
Written by: Danielle Kutchel