Disability is a spectrum
There was consensus that recognising that disability is a spectrum became increasingly significant for wellbeing. Disabilities vary widely and can be visible, less-visible and non-visible and encompass a wide range of physical, sensory, cognitive, and mental health conditions, each with its own set of challenges and needs. From my research I learnt that acknowledging this spectrum is essential for developing inclusive and adaptive policies, services and care that truly supports the wellbeing of disabled individuals. Failure to understand that disability is not a single, homogeneous condition but a spectrum encompassing a wide range of impairments and experiences can be a contributing factor in the wellbeing needs of disabled people not being met.
Some of the most complex challenges are those faced by individuals with multiple disabilities, where the intersection of various impairments further complicates their daily lives and access to support. At Sydney University I met with researchers working on deafblindness–dual sensory impairment (DBDSI) research, including Dr. Annmaree Watharow and Dr. Moira Dunsmore. DBDSI involves concurrent hearing and visual impairments, with varying severity and onset. Australia does not recognise DBDSI as a unique and distinct disability so there are no specific protections, policies or directed support for this group of Australians or their caregivers.
I went on to learn from others that multiple disabilities’ experiences often fall outside the mainstream narrative of disability and therefore people often struggle to find appropriate support and accommodations, exacerbating barriers to accessibility, communication, and inclusion, affecting their wellbeing.
“Very often we are put in the ‘too hard’ category because people assume we can’t. But the problem is, they’re often not asking.”
My discussions deeply underscored the necessity of listening; a fundamental step toward understanding and action. How would we even know how to begin with offering the right support, how would we know how to support someone’s wellbeing if we don’t listen to people to better understand their needs?
I also learnt about challenges faced by those with non-visible disabilities.
“Well you don’t look ill” - without visible signs of pain or external markers of sickness, others cannot see the constant balancing act of people living with a non-visible condition.
Their stories are not often told, their voices not often heard and their needs not often met.
Despite not being visible, these disabilities significantly impact daily life, functioning, and overall wellbeing.
A doctor in Australia shared how challenging it can be; “I don’t fit the picture that is often assumed when it comes to disability and I’m constantly having to convince others that I’m ill. Phrases such as ‘you don’t look that ill’ are often used to weaponise, to doubt or question the seriousness of my condition. I’m trying to realise that it’s not my responsibility to convince others that I am in pain.”
Recently there has been growing recognition of the challenges faced by individuals with non-visible disabilities. One initiative is the Sunflower Scheme which involves wearing a sunflower badge or lanyard, to signify hidden disabilities and signal that they may need additional support, understanding, or accommodations.
It is a worldwide initiative but I’ve never seen more prominence than in Australia, as part of their broader accessibility efforts and has generally received positive feedback. However, when I spoke to a group of people with non-visible disabilities in Australia, they spoke about it being primarily a “symbolic gesture.”
"Is enough happening with regards to tangible support for people with hidden disabilities in Australia?" I asked. The group all shook their heads. Without accompanying changes in policies and practices and appropriate support, they felt the lanyard meant nothing.
In addition to non-visible disabilities and multiple disabilities, it’s also important to consider the challenges for people who acquire disability later in life.
In her written piece ‘The Air that I Breathe’ Dr Annmaree who I met at Sydney University described that her “life was like a building site after an explosion: rubble, thick stifling dust” as she came to terms with her dual sensory impairment.
A crucial time, shared with me by Doug Nutting from ALACD, is the early rehabilitation stage which can have long-term benefits for wellbeing. This stage often involves building a collaborative and multidisciplinary support system, which Doug states “is a crucial piece to the puzzle”, highlighting the importance of support systems for disabled people's wellbeing.
The case studies above underscored the enormous variability in disabilities and the different needs associated with them. Each individual’s experience is unique, and their wellbeing needs vary significantly depending on the nature of their disability and therefore effective wellbeing support, policies and practices must be personalised, inclusive, and responsive to the diverse needs of disabled people.