“Only by empowering people living with invisible disability to feel comfortable in disclosing their conditions and enabling them to find the support they need; can we truly start to address this hidden reality for so many Australians”
(Penny Evans, National Diversity Employer Manager, at Work Australia)
What Is A Hidden or Invisible Disability?
When thinking about a person who lives with a disability, we may conjure in our minds a person in a wheelchair, or with a physical condition that affects them. There are often outward signs or paraphernalia indicating that a person lives with a condition, illness, or are differently abled in some way, but what about those people who live with conditions that cannot be physically seen? 1 in 6 Australians currently lives with a disability and it is estimated that up to 96% of people with disabilities or chronic medical conditions live with a hidden or invisible illness. Millions, yes, millions, of people live with invisible disabilities or hidden conditions such as:
- Chrohn’s and Coeliacs disease
- Chronic Fatigue Syndrome
- Chronic pain
- Cognitive challenges
- Cystic Fibrosis
- Ehlers Danlos Syndrome
- Hearing or visual impairment (who do not wear hearing aids or glasses)
- Inflammatory Bowel Disease
- Intellectual and learning disabilities, and other associated conditions
- Irritable Bowel Syndrome
- Learning difficulties
- Lyme disease
- Mental health challenges
- Mobility or speech challenges
- Rheumatoid arthritis
- Sleep disorders
- Toileting challenges such as renal failure or waring an -ostomy
Why are Invisible Conditions and Hidden Disabilities So Problematic?
People living with these conditions are not immediately recognisable, and nor should they be, in an ideal world where all are treated equally with equal respect, but there are countless testimonies from those living with invisible or hidden conditions of prejudice, missed opportunity, discrimination and periods of suffering in silence.
Everybody, with or without visible or invisible disabilities, deserves to be equally included with dignity and offered access to help. Making invisible disabilities less obstructive is an important task. Living with Hidden disabilities can be exhausting, isolating and every day life can be demanding, but these situations are exacerbated when people living with hidden conditions experience prejudice when using disabled parking spaces, for example, or not receiving the help they deserve from their employers, or not being able to sit in a priority seat on a train.
When a condition is not visible, it becomes harder for others to recognise the needs of the person living with the condition, which in turn makes it harder for us all to acknowledge or understand the challenges that person may face; if the public cannot see signs of the condition, they would not know it existed if they weren’t told.
Some people are even accused of faking their conditions by those who do not understand the power of invisible disabilities. This can lead to the possibility that people living with hidden disabilities or conditions might want to keep their situation hidden from prospective employers for fear of prejudice in their work or, worse still, not getting the job at all. They may be concerned that they will fall victim to perceived stigma surrounding their condition and this will put them at a professional disadvantage, and will likely lead to further isolation.
What Can We Do to Help Those with Hidden Disabilities or Conditions?
The key defining factor in all these cases is the level of invisibility and this ‘hiddenness’ is what people, groups and companies are beginning to combat.
There are 2 powerful ways that we as a community can do to help people living with hidden conditions: Education and visibility.
Education: 10 Ways to Combat the Effects of Hidden Disabilities
In terms of education, it is a great thing to understand what people living with hidden conditions need, and how the public can interact with them in a way that is constructive, inclusive and helpful (if help is wanted). Here are some ways in which we as the public can help those living with hidden conditions:
- Show patience and understanding to everybody.
- Listen to and learn from those who disclose their invisible disability to you.
- Only offer advice if it is asked for – they have likely already spoken to several people about their condition.
- Employers should encourage all employees to ask for help in confidence.
- Respect privacy – don’t just ask strangers why they are using facilities
- Be open to helping others, whether they have a visible disability or not.
- Celebrate awareness days to spread the word.
- Use correct word framing when referring to conditions or disabilities.
- Don’t judge people – understand that just because a disability isn’t visually obvious, this doesn’t mean the person is ‘faking it’.
- Don’t jump to conclusions.
- Many people may need to use a disabled toilet who are not in a wheelchair.
- Many people may need to use a disabled parking space and may have a permit without having a visible disability.
The importance of hidden disabilities is becoming more and more known. Projects and companies alike are beginning to learn to understand the needs of people living with hidden conditions and there are a growing number of initiatives that are designed to increase he visibility of invisible disabilities:
International Day of People with Disability – Held on December 3rd, The United Nations develops an annual ‘International Day of People with Disability’ for the public to look at and adjust the way we understand disability.
The Sunflower Project – The Sunflower is all about making the invisible, visible; by wearing a sunflower badge, you can help others realise that you have a hidden disability and that you may need to use disabled facilities or sit in a disabled seat.
The sunflower badge is an amazing example of the autonomy that all people need, whether living with disabilities or not – because wearers can also choose not to wear a badge, at their own discretion.
Invisible Disabilities Access Card – This card and lanyard visible system allows the public to be aware if an individual’s possible additional needs in the same way the Sunflower does, but the Invisible Disabilities Access Card also advises the public, and potential helpers, of the nature of the assistance you require. Badges and window stickers are also available.
Blue Star Badges – Blue Star Badges are designed to be worn by people living with invisible disabilities so they can feel confident using disabled facilities.In addition, People can wear a badge if they trained to recognise, respond and support people with disabilities discreetly and appropriately.
Disability Support – Your invisible disability does not stop you from being funded by the NDIS scheme. If you have a visible or invisible disability, the access requirements remain the same. Contacting a caring, professional and efficient NDIS funded support network such as ConnectAbility in Warabrook, Newcastle or the Central Coast will help you achieve the help, freedom and autonomy we all deserve.
#thinkoutsidethechair – #thinkoutsidethechair is a collaborative movement and campaign designed to challenge and change the current thinking around disabilities by informing, engaging and educating to see all Australians living harmoniously in communities that celebrate inclusion and diversity because not all disabilities are visible.
Don’t Judge a Book by Its Cover
The key takeaway with hidden disabilities is an echo of the old saying ‘don’t judge a book by its cover’. Many people live with invisible conditions and the public must go further in understanding the individual they are connecting with in order to create and sustain meaningful, helpful, positive interhuman connections.