Writer. Intersectional feminist. Easily overwhelmed.
Not all disabilities are visible – why workplaces need to recognise invisible illness
This blog is part of our Expert Commentary series, bringing you insights into some of the unspoken challenges women face in the workplace, from experts with lived experience. The series explores a range of topics and perspectives to highlight the ways inclusive and compassionate leadership practices can benefit everyone.
Every December the United Nations observes International Day of People with Disability. Most recently the day’s theme was ’Not all disabilities are visible’. In fact, it’s estimated that up to 90 per cent of disabilities are hidden. Which means, while you might not be familiar with the term ‘invisible disabilities’ there’s a good chance you work with someone who has one.
People often find it difficult to empathise with invisible disabilities because there are no visual cues to help imagine life in another person’s shoes.
When we meet a person with one arm, we can imagine the ways in which our own life would be different if we were in the same situation. But when someone says “I have chronic pain,” we’re not as quick to understand how that could affect our day-to-day activities. This makes people with invisible disabilities less likely to disclose their condition, because it creates an additional burden of education and usually involves well-meaning but unhelpful advice.
While people with visible disabilities are often called ‘heroes’ or ‘inspiring’, people with invisible disabilities are more often accused of ‘faking it’ or ‘attention seeking’. To be clear, both of these attitudes are deeply problematic and the prevalence of both of these says a lot about how far we have to go with inclusive language around disability.
I have an invisible disability. Personally, I’d much rather have the power of invisibility, so I could fight crime on the weekend. But having an invisible disability often feels pretty close to being invisible, especially in the workplace. Much like my identity as a queer person, I often have to make a conscious effort to ‘come out’ as a person with disability to my employers in order to access the support I need. This isn’t always an easy process.
In addition to the labour of educating employers, I often face discrimination or just outright disbelief and dismissal of my lived experience. And I’m not alone in this. In the Center for Talent Innovation’s “Disabilities and Inclusion” study they found that 30 per cent of the professional workforce fits the current definition of having a disability, but only 39 per cent of those people have chosen to inform their manager. This is despite the fact that employees with disabilities who inform most people they interact with are more than twice as likely to feel regularly happy or content at work than employees with disabilities who have not told anyone (65 per cent versus 27 per cent). They’re also less likely to regularly feel nervous or anxious (18 per cent versus 40 per cent) or isolated (8 per cent versus 37per cent).
In the workplace this stigma can create a huge barrier to accessing the resources and support available for people with disabilities. Most workplaces are legally required to provide ‘reasonable adjustments’ for employees who identify as having a disability. Reasonable adjustments are designed to help address any barriers a person faces to performing the essential requirements of their job. For instance, if a person with visual impairment can’t see their computer screen and their job requires them to read documents on said screen, then they can request screen reading software as an adjustment.
There are two problems with this when it comes to invisible disabilities. The first is that many people with invisible disability don’t actually identify as being disabled. For most of my life I didn’t identify as having a disability. Despite the fact that every single definition of disability I came across seemed to be written with my experience in mind. But whenever I thought of disability, I thought of my friends who had visible disabilities. And I thought that identifying with the ‘disability’ label would be minimising their experience, that I might be taking resources away from them.
This meant that when I saw policies about reasonable adjustments for people with disability, I never considered they would apply to me.
What changed my mind was a conversation I had with a colleague with a physical disability. We had both recently participated in a survey about reasonable adjustments and the workplace that asked “Does your disability prevent you from participating in the workplace?” My colleague has a visible disability that affected the way her body developed. But when she saw the question she immediately responded ‘no’ because in her experience her disability hadn’t impacted her work or career at all.
When we talked about it she asked how I would have answered, and I realised that there were many days when I couldn’t get out of bed, when I couldn’t think clearly enough to work, and workplaces had fired me because of this. I had a disability. It dis-ables me from participating in life the way everyone else does.
But not everyone has this realisation, and for those who don’t, the language around support for people with disabilities can create a cognitive barrier to accessing that support.
The second problem with reasonable adjustments is that someone who has an invisible disability has to rely exclusively on their own ability to communicate their symptoms in order to have their experience recognised. This is referred to as self advocacy. If someone using a wheelchair says they need a desk the right height for them to use, it’s easy to see what they’re referring to. If someone says fluorescent lighting triggers migraines, they have to trust you’ll believe them because they can’t provide proof.
Asking people to self-advocate, particularly when they don’t recognise they even belong to a protected group, can prevent people from seeking support. Most people with an invisible disability have experienced more scepticism and dismissal than acceptance. Their lived experience tells them that advocating for themselves is unlikely to yield positive results. Disability discrimination accounts for the highest volume of complaints to the Australian Human Rights Commission annually and a 2011 Canadian study found that 88 per cent of people with an invisible disability had negative views of disclosing their disability to employers.
This understanding MUST form the foundation of every policy for disability support. When we internalise this context we start to recognise the barriers to participation in workplace disability support. Reasonable adjustments rely on people to identify what the barrier is to them performing the essential requirements of their role. A lot of the time people with invisible disabilities have learned to perform their role despite barriers. Someone who experiences chronic pain will teach themselves to work despite their pain. A person with mental health issues will learn to mask their symptoms in order to perform their role. Many people with invisible disabilities will have never considered what adjustments might help them.
As with many workplace issues that fall under the Diversity and Inclusion umbrella, the key to creating an inclusive and supportive workplace for people with disability is ensuring that the people with decision making power understand and empathise with their employees’ experiences.
If you can’t understand why I’m afraid to tell you about my disability, then you’re only reinforcing my decision not to.
WE NEED MORE LEADERS LIKE YOU
You’re here because you know that great leadership enables better outcomes for people. We’re here to help you be a great leader for your organisation.
For more leadership news, plus event updates and expert tips, subscribe to our mailing list. SUBSCRIBE NOW