When we think of disability, the first symbol to come to mind for many of us will be a blue figure using a wheelchair - an image otherwise known as the International Symbol of Accessibility (ISA) (RI Global 2016).
Adopted as an international standardised symbol to indicate wheelchair-accessible environments, the ISA is now often used in a variety of settings to indicate a whole range of accessibility and disability-related issues.
Where the ISA arguably fails, however, is in its representation of the broader disability community. For instance, among the 4.4 million Australians living with disability, more than 90% don’t look like the ISA at all (AIHW 2020; Leedon 2015).
Does the International Symbol of Accessibility properly represent the broader disability community?
Invisible disability (or hidden disability) is an umbrella term used to describe disabilities that are not immediately noticeable when looking at someone. The term applies to a wide spectrum of conditions including physical, mental and neurological disorders that impair daily functioning (IDA 2019).
Invisible disabilities include conditions such as chronic pain or illness, mental illness, injury and congenital disorders (Disabled World 2020).
It’s estimated that 9 out of 10 Australian people living with disabilities have conditions that are invisible (Leedon 2015).
Despite not being immediately obvious to others, invisible disabilities can cause significant daily challenges such as pain, exhaustion and social isolation (Hidden Disabilities Sunflower Scheme 2020).
Because of their hidden nature, invisible disabilities can go unacknowledged, leading to a lack of sympathy and understanding within society (Hidden Disabilities Sunflower Scheme 2020).
Sometimes, disability can be identified by the presence of aids such as canes or service dogs.
List of Invisible Disabilities
The following list covers some of the many invisible disabilities. Many of these conditions have their own Ausmed articles where you can find more information.
Vision impairment (some people may wear contacts instead of glasses).
(Disabled World 2020)
Caring for People Living With Invisible Disability
As stated by the National Disability Insurance Scheme (NDIS) Practice Standards (2020), people caring for those living with disabilities have a responsibility to provide care that:
Is person-centred
Treats clients with dignity and respect
Supports clients’ individual values, beliefs, culture and diversity
Protects clients’ privacy
Allows independence and informed decision-making
Is free from violence, abuse, neglect, exploitation and discrimination.
With this in mind, the following practical tips may help you to care for people living with invisible disability:
General considerations
If you know that a patient is living with an invisible disability, ask them what they can and cannot do
Never force or convince someone to do something that they say they are unable to do
Encourage patients living with invisible disabilities to participate in activities at a level they are comfortable with and ask how you can support them to participate
Only offer assistance if the patient wants it, and if they do, ask what they want you to do specifically
Speak directly to the patient, not to those around them
Smile and be willing to communicate
Avoid handshakes as a default greeting
Never distract service dogs
Patients living with auditory impairments
Let the patient establish their preferred method of communication (sign language, lip-reading, note writing etc.)
Talk to the patient directly, even if they have an interpreter
If the patient reads lips, face them directly when speaking. Speak clearly and at a moderate speed
Avoid finishing the patient’s sentences for them
Be patient and pay attention while the patient is speaking
Ask the patient to repeat what they have said if you do not understand
Be prepared to communicate via computer, pen and paper, or an alphabet board if required
Patients living with visual impairments
Excuse yourself before leaving the patient
If guiding the patient, let them take your arm and walk slightly ahead of you
Never pull or push the patient along
Be specific when describing nearby objects
Patients living with cognitive impairments
Keep communication simple
Rephrase statements if required
Pay attention to what the patient is saying and how they respond to you
Be patient and give the patient time to show or tell you what they want to communicate
(Disabled World 2012)
Conclusion
In your professional life, you are likely to interact with many people living with invisible disabilities. Therefore, it is important to avoid making assumptions and always treat your patients with respect.
Even if you can’t visibly see the challenges your patients face, acknowledge and understand their experiences as best you can.
Additionally, remember that disabilities affect people in different ways, and for that reason, it is important to always provide individualised and person-centred care.
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