People with invisible disabilities know better than anyone that they need to prove that their condition is real over and over again. Despite what a lot of people seem to think, invisible doesn’t mean imaginary.
The concept of passing is a tricky one, and obviously I’m not a sociologist or expert, so can only present my own experiences, but I have been told both that I am lucky that I do “pass” and had friends bemoan that we “pass” because if we didn’t, people would believe us.
There are two ways I have seen passing referred to:
People, usually strangers, simply not realising that you are disabled because your condition is invisible
Disabled people intentionally making an effort to not appear disabled e.g. minimising a limp or covertly taking medication, in order to not be treat like or discriminated against as a disabled person
The latter, I have also seen referred to as masking, but when this term in used instead of passing, it is usually in relation to neurodivergence rather than other invisible disabilities. Masking is equally complicated and I’m not going to specifically talk about it here, though I have consciously and subconsciously made effort to both pass and mask for different reasons. I have also unintentionally passed as non-disabled as outlined in my first example.
Some efforts to pass might seem completely innocuous, even polite. Hardly anybody wants to be that person who responds to “How are you?” honestly. People don’t like that person. They’re not going to ask how they are again. They’re not going to have a conversation with them or ask them if they want to grab lunch, because, even though British people are known as a nation of complainers, you’re only allowed to moan about the weather (cold and wet), call centres (unhelpful and time consuming) and food (see weather…). The closest you can get to complaining about your health is to refer to the crumbling state of the NHS - anything more specific just isn’t cool. So, you smile, say you’re fine and stand still until they leave so no one sees you limping back to your desk.
Which, like I say, seems harmless.
But if you’re not fine, the effort to smile is using up valuable energy you need to get through the rest of the day. Standing still and hiding your limp is aggravating your symptoms. And that’s not even going near the fact that you’re not being your authentic self.
And why are we hiding? Partly because we don’t want to make someone else feel uncomfortable, mostly because we want to fit in.
The not fitting in because your body doesn’t work like everyone else’s was delightfully hammered into me in school. School is where I learned I needed to hide my physical limitations as best as I could. No one must ever know that I couldn’t ride a bike. I had to apologise for not being able to run fast enough, jump high enough, throw far enough. These are all the things that make people feel uncomfortable so we learn to hide them. As I’ve gotten older, I’m more comfortable with others being uncomfortable, and if they don’t like it, they can run fast enough and jump high enough to go bye bye.
I’m making a real conscious effort these days to not hide who I am because other people feel uncomfortable with it. And it isn’t always easy to let my leg limp how it wants or tell people in the office that I need to lie on the floor during a meeting, but it’s better than the alternative of making myself more ill later on by putting all of my energy into pretending the situation is something it isn’t.
I first thought about covering passing as a concept after reviewing Gloria Rosen’s one woman show, Listen… Can You Hear Me Now? In the show she talks about how her mother tried to pass as a hearing person by lipreading while Rosen herself conversely tried to pass as d/Deaf to fit into the community.
The concept of passing is a tricky one. It’s complex and messy and controversial. It’s used as an insult and a compliment, both of which are equally inappropriate. People who pass and people who do not are equally envious of the other side of the coin.
I actually laugh at people who tell me that my disability isn’t invisible because they can see it. They seem to think this makes them so kind of special genius seeing right through me. But I don’t care if they can see it or not. Most people can’t, so it’s invisible, or at least mostly invisible. Most people don’t see me at my worst.
And I don’t care. I don’t want to pass as non-disabled. It takes far too much energy and effort and anyone who needs me to do that to be in their life, isn’t welcome in mine.
Take care,
Donna
Self-care snippet
Here’s a little morning alternative to coffee drink I made. Simply very thinly sliced apple, steeped in boiling water with a touch of honey and a cinnamon stick.
Tasty, warming and a great way to up your water intake right at the start of the day.
Things I’ve seen, heard, read and talked about
Richard III at the Globe There has been so much discussion about this recently, that I’m not linking one story here, but the statement from Equity provides a good starting point if you’re not familiar with what’s happened. As a disabled theatre practitioner, particularly one with an invisible disability, I have heard and made all the arguments for the casting of disabled people in disabled roles. Taking a film example, there was a lot of discussion about The Theory of Everything that someone with motor neurone disease (MND) could not be cast to play Stephen Hawking as he had to be seen prior to his symptoms manifesting which would not be possible for an actor with MND. Theatre wise, I have been told that adjustments, whether apparently reasonable or not, simply cannot be made when there are performance and rehearsal commitments which must be kept to. Worst still, many theatres are simply not accessible. And then there was a fellow actor who told me after one rehearsal that I had no right to be playing a character who was not disabled… I did actually play Richard III myself many years ago and, at the time, had a diagnosis of scoliosis - this was, it turned out, a misdiagnosis with my symptoms actually being caused by my hip dysplasia and hypermobility spectrum disorder, but at the time all intentions were to portray Richard as he was - our x-rays are actually eerily similar. It can be a tricky situation for some theatres to cast disabled people in disabled roles on occasion - there are of course circumstances where no one who is disabled even auditions and they have to cast someone - but this time, someone has just taken a role that they fancied doing and not given anyone else, disabled or not, the opportunity to even apply. As the Bard’s namesake theatre, seen as so influential on our cultural heritage, they really should do better.
Co Down woman raising awareness of condition which makes her faint every day I really identified with this story about daily fainting episodes and doctors not being familiar with PoTS. We need to keep telling people about the condition and get them to take it seriously!
Job of minister for disabled people downgraded Yet another example of how disabled people are treat like we don’t matter…
Doctors complain to BBC over Dragons’ Den contestant’s claim ‘to have cured ME’ Really messy story which is upsetting for people who have been told for years that their conditions are psychosomatic and could be easily cured with alternative methods.
Pain hyperacusis: 'Hearing my children's laughter is like torture A really emotional piece about the impact that hyperacusis can have on your life.
Finding Better Healthcare With Ehlers-Danlos Syndrome: From a Physician with EDS A great piece on how patients can help their doctors during diagnosis journeys. This piece specifically deals with EDS, but the principles can be applied to any condition your doctor is struggling to diagnose. Putting together a comprehensive list of symptoms and full history was actually how I got my own diagnoses. If you’re on this journey you may feel like you shouldn’t need to help your doctors along, but unfortunately the awareness just isn’t there at the moment and by advocating for yourself as much as you can, you’re helping at least one person learn more about a condition they weren’t familiar with.