«There is no one way to look disabled»
– Emily Ladau, Demystifying Disability (2021)
Last week I wrote about ‘Disabled Pride’ – and about the radical act in taking pride in who we are, even when the world tells us not to. How disability pride can coexist with a queer identity – and how claiming space as both disabled and LGBTQ+ is a powerful act of self-recognition. But, as many of us know, pride can be complicated. This is particularly the case when you, like me don’t look obviously disabed. So this week I wish to zoom in on a different kind of visibiliy; one that sets the focus not on wheter society sees our pride, but rather whether it sees our disability in the first place.
For many of us, our disability isn’t outwardly visible. We may not use mobility aid, we might smile or nod our heads and «pass» as able-bodied individuals in passing conversations. Sure, I use filtered glasses daily for my light sensitivity (I have a couple aimed at different levels of light-protetion) – but to most people this just looks like I’m using sunglasses inside.
By «passing» as able-bodied on a relatively daily basis, random people will in turn treat you as such. The difference of course is that you’re not. And the effort it takes to function throughout the days; through pain, and fatigue, daily seizures, brain fog or sensory overload are all exhausting. But because most people aren’t aware of this, the disconnect between ‘looking’ and ‘being’ disabled leads to many actual problems.
In many situations, invisible disabilities can lead to being disbelieved, dismissed, or accused of exaggeration.
One of the most frequent examples from my own life concerns whenever I have to take the buss during rush hour. It is something I avoid like the plague, but every now and then it’s impossible to do so. Firstly because busses is the closest and safest method of travel to where I live. Secondly, due to my epilepsia I am not allowed to drive a car – so busses is the only close way of travel for me (safe or otherwise).
So why do I hate taking the buss??
First of all, its a closed, tight space filled with excess lightening, all kinds of smells and (often) alot of noise. These are all things that my brain reacts to, and leads to larger seizures. The amount of times I’ve woken up in the middle of a buss-aile to a bunch of terrified passangers and a buss-driver kicking me out of the buss and intoo an ambulance is immense.
Usually, the only way I’m able to avoid seizues is by sitting close to a window trying to sleep while listening to music.
BUT during rush-hour, seating is first and foremost for the elderly, for pregnant women, for young children, and for the disabled. BUT I DON’T LOOK DISABLED!
Of course, I could scream it out intoo the buss that I am disabled and need a place to sit, please! But when you don’t look like other people’s perception of disability ( I mean, I even wear red lipstics and nice clothes! …..) then you’re not likely to get very far with that.
So quite often, when standing, I am forced between making myself look more poorly so people can see that I am disabled , or litterally being on the phone with my mother the entire bussride, just so that I would have something else to focus on – and so she’d know If I had a seizure.
As author Emily Ladau reminds us in her book Demystifying Disability:
«Disability doesn’t always look the way people expect it to. You can’t always see it, and that doesn’t make it any less real»
– Emily Ladau, (ibid).
There are many examples like my struggles with public transportation. And while some are hard to explain, and others hard to understand – they all tend to build up. They can make you doubt yourself, and make you question whether you’re actually just lazy. Due to this, invisible disability comes with an added layer of emotional labour; of constantly deciding whether to disclose, explain or stay silent about your condition(s).
Over time, I’ve come to understand that the issue isn’t just a misunderstanding by the general population, it’s also a mistrust.
The level of mistrust varies between countries, depending on a number of other societal factors – but even in a country like Norway; a country where social trust is higher than many other places, mistrust in the reality of what cannot be seen still exist.
Many people assume that if you’re not visibly disabled, you’re not «really» disabled.
But disability is not a performance; it’s not something we owe the world a demonstration of.
Image «The Real Unseen»
by S. E. Y.
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- According to research, 1 in 4 adults in the USA (roughly 61 million people) has a disability according to the CDC. This number is based on data from the 2022 Behavioral Risk Factor Surveillance System (BRFSS).
Furthermore, out of these a significant portion have invisible disabilities, including chronic pain, mental health conditions, neurological disorders (this is where epilepsy comes in) and more.
- In the U.K, a study by Scope found that 67% of disabled people reported being stared at, questioned or disbelieved when using assecible facilities like parking spots or toilets – because they didn’t «look» disabled enough.
- The Invisible Disabilities Association reports that up to 80% of disabled people live with conditions that are not outwardly visible.
Sometimes people with invisible disabilities face skepticism, even from other disabled people. Many feel this pressure to ‘prove’ themselves ( I know I have!). There can also be feelings of resentment if you can pass when others can not. These are all real tensions, and they are all extremely painful.
But here’s the truth; disability is not a competition. Visibility doesn’t make you more or less disabled; it simply removes some struggles, and adds a bunch of others (and vice versa).
Our experiences might be different, but our needs – and our dignity are valid across the spectrum.
Last week I wrote that Pride means reclaiming space. For those of us with invisible disabilities, this type of pride might look quiet. it might be refusing to apologize for asking for help. It might be saying «I need a break» without feeling guilt. It might be using a disability-related pin, parking permit – or asking someone walking with you to slow down, withouth offering a medical history as proof.
So know that, if you live with an invisible disability: I see you!
If you’re learning to balance ambition with chronic limitations: I see you!
If you’re tired of explaining, defending yourself or being disbelieved: I see you!
Because, disability is diverse. It is valid. And it deserves space in every conversation – Including PRIDE. Because in the end, real pride doesn’t require evidence – it requires courage.
– Silje
