Invisible Disabilities: Living life in the grey area

There are 1.1 million people living with a disability in NZ, and about 18 percent have an invisible disability. That’s about 165,000 people – so the chances are you probably work with someone who has an invisible disability already. Rosemary Johnson outlines easy steps leaders can take to create a workplace that recognises those in the grey area and acknowledges that it can be exhausting to live in. 

What’s your vision of a disabled person? Is it someone using a wheelchair? Are they blind? Is it something tangible and easily recognisable? And what’s your idea of someone who is ‘normal’? Most people look at these two classifications as two distinct states; normal or disabled. But for some people there is no black and white, they are in the grey area of life. 

They have what is called invisible disabilities, which covers a diverse range of conditions: neurological, cognitive, neurodevelopmental, long term medical conditions like Lupus, musculoskeletal issues, epilepsy, or sensory and processing difficulties such as dyslexia and dyspraxia. We call these ‘invisible’ in recognition of the fact that many people don’t easily ‘see’ these disabilities and how they impact someone. 

I’m one of these people living in the grey area.

I was in my early forties, married with two children under 10, when I developed a musculoskeletal condition. It left me unable to use my dominant right arm and shoulder, and many movements in the rest of my body were greatly restricted. I couldn’t drive, button a shirt, or brush my teeth. I cut mashed potato with a steak knife. 

Now after two decades of rehab and treatment I can drive again, but working at anything involving lifting weights is exhausting and painful. I have come to accept that there’s just things I’ll never be able to do again.

And while this has been challenging, to say the least, it’s given me huge insights into the ways that those of us with invisible disabilities move through the world – especially at work. 

NZ research shows there are 1.1 million people living with a disability in NZ, and about 18 percent have an invisible disability. That’s about 165,000 people – so the chances are you probably work with some of us already. These are some easy steps you can make to create a better workplace, one that recognises those in the grey area and acknowledges that it can be exhausting to live in. 

1.    Increase general awareness through training: The first and biggest issue around invisible disabilities is many people still don’t know they exist. So creating a culture of awareness around this in your workplace is crucial. The best way to do this is to bring in organisations who offer suitable workplace-based training.

Do your research. See what’s out there, see what training would best suit your workplace and book in a provider who has a strong history of delivering in this area. And have someone in your team take ownership of keeping this awareness alive in the company. After all, the best procedures are ones that have been developed by the people who are going to use them. If you can’t afford workplace training right now, there are other simple awareness initiatives, such as the Hidden Disabilities Sunflower Lanyard. It’s a simple, tactful way of letting someone know that the employee has a hidden disability.

2.    Be conscious of your conversations at work: Even if your company promotes awareness, your staff may still find it hard to know how to talk about invisible disability. Or, without realising it, they may say things that leave those of us in the grey area feeling isolated. After all, a lot of casual office chat is around what you did/or you’re going to do outside of work. And that can feel lonely for those who feel they can’t do a lot. 

The good news is that it can be really easy to change this. You can ask ‘How are you?’ and take the time to listen for the answer. Or, if you know of someone’s situation, do a little background research into it and ask about any common side effects that might impact them at work (is the office music too loud, for instance?). Or maybe just ask if they want to talk about it? Sometimes we don’t need you to do anything, we just want to chat about it. 

I will always remember the kindness and tactfulness of one of my co-workers, who was also a mum, who would often check in with me and gently ask if my situation had changed. It was a simple question but it reminded me that people cared.

3.    Do an anonymous survey of the workplace: A workplace that appears normal can be very hard for someone living in the grey area. If a disability is visible, it’s easy to design a workplace around it. But there can be many hidden barriers to those with an invisible disability, none of which are immediately obvious.

Take opening a door. Most people don’t think twice about turning the handle on a door and opening it. But I dreaded doors with a round handle because I couldn’t hold or twist them. I got stuck in a toilet once at work, and was on the verge of a panic attack until someone heard my cries and turned the handle on the other side for me. So doing an anonymous survey of the amenities can highlight a whole raft of unidentified traps and nightmares. 

Anonymity also enables people to share the struggles they face discreetly. Often the solutions can be simple too. Such as replacing round handles on the doors with lever shaped ones. Or, if someone has hyperacusis or who is on the autism spectrum, they may be less tolerant to loud noises. So, allowing noise cancelling headphones at work, or keeping the office music off during the day, would be hugely helpful. But you won’t know until you ask.

4.    Invite someone who’s living with an invisible disability to lead an initiative in the workplace: After you’ve taken the survey, take it one step further by inviting someone in the grey area to lead a focus group and address these issues long term. This group can be focused on finding workable solutions, and having both ownership and first hand understanding of the situation is invaluable. They’re less likely to make assumptions, and are far more invested in the best outcomes for everyone. 

Also, often fellow workers are supportive and genuinely want to help. Giving people the opportunities to talk and explain their situation creates a forum for innovative ideas. Not to mention the fact that talking about our situations allows those of us living with an invisible disability to feel accepted. 

So with a few simple steps, you can build a far more inclusive space where your team can flourish. And if you’re looking to help support those in the grey area, my advice is to just ask. It just makes us feel that we have been seen, recognised, and not turned into a big drama. And that’s one of the most valuable things you can do as a leader. 

October 2023 is Invisible Disabilities Awareness Month.

More sources of information
Office for Disability Issues Te Tari mo nga Take Haua,

YES Disability, 3 William Laurie Place, Albany, Auckland

The Cube Invisible Disabilities Collective 3 William Laurie Place, Albany, Auckland Ph: 09 414 5360 [email protected], provides a perspective on the barriers that young people with invisible disabilities face. 

Hidden Disabilities Sunflower Lanyard,   

Rosemary Johnson is a former world champion athlete, career coach and founder of My Future Career Academy, which helps those in the grey area to work in, and re-enter the workplace with confidence.


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