This week (October 16 – 22) is invisible disabilities week.
Invisible disabilities are disabilities that are not immediately apparent to others as there are no visible symptoms, and assistive devices are not relied upon continuously.
Not being able to see a person’s disability does not mean it does not have a significant impact on their daily life.
Living with an invisible chronic illness can be a struggle every day. People may have to give up careers that they have pushed themselves hard to get. They may have to give up on future dreams that they’ve been looking forward to and now have to battle a body that has no remorse.
They can get exhausted after doing what many would call simple tasks. They may have to tackle judgements and limitations that they never thought they’d have to deal with.
They may push themselves harder than ever before just to get up and ready for the day and then strive throughout the day so that they don’t let people or themselves down, and then have to suffer the consequences in silence as many people just don’t understand or even see.
Many rare diseases and disorders are invisible, and this can make getting a diagnosis can be extremely time consuming and accessing support services even more challenging.
Around the world steps are being taken to recognise those that are affected by a myriad of rare diseases and disorders and systems are slowly being put in place to provide supports and better diagnosis. But more needs to be done!
In New Zealand we have a long way to go but Rare Disorders NZ is advocating to the government for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition.
Their aim is to see New Zealand become a country where people living with rare disorders are fully recognised and supported, with equitable access to health and social care.
A reasonably new initiative has started in some of the major airports around the country as they have recognised that airports are busy environments and can be stressful for many people, particularly if you are unsure what to expect on the day.
The Sunflower Lanyard Program provides people with hidden disabilities a discreet way to let airport staff know they have an invisible disability such as autism, ADHD, dementia or a visual impairment, without having to tell staff.
The airport staff are trained to recognise the sunflower lanyard and to provide you with any help you may need at the different stages of your journey through the airport.
For example, if you are feeling overwhelmed, staff can slow down the process for you, keep things quiet and offer extra assurance.
The lanyard does not entitle you to fast track or jump queues but where possible staff will move you to the front of a queue or direct you to the shortest queuing lane.
If you, or someone you are travelling with has a disability that isn’t immediately obvious, some airports within NZ can now provide you with a hidden disability lanyard to wear on your journey through the airport. Find out more here.
Recreation Aotearoa in 2019 recognised that within NZ, most disabled people with support needs have impairments not visible to the eye – and for many that means getting information, getting to places, and participating in everyday recreation opportunities is far from easy.
Coupled with this is the fact that many disabled people are also on low incomes which acts as another barrier to equitable participation.
Their ‘Insights‘ paper explored ‘invisible disability’, some of the ways it may affect people, and how as providers you can actively include a wider range of people in recreation participation.
How will you support and encourage those around you with Invisible Disabilities? How can you raise awareness of Invisible Disabilities on social media and within your workplace? What way can you advocate on behalf of those with rare disorders and diseases so that they get equitable support and care?
Will you help promote #invisibledisabilitiesweek?
You can read about my health journey with an invisible disability (Scleroderma, Raynaud’s & Interstitial Lung Disease) here.
The life and times of Perry... 