What is an invisible disability?
The Invisible Disabilities Association says:
An invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities.
Symptoms can be debilitating pain, fatigue, dizziness, cognitive dysfunctions, learning differences, mental health disorders, or hearing and vision impairments for example. They can limits your daily activities.
These can come from a wide range of conditions like Fibromyalgia, Crohn’s disease, Multiple Sclerosis (M.S.), Autism, Anxiety, Myalgic Encephalomyelitis (M.E. also known as Chronic Fatigue Syndrome), Lupus, and many more…
93% of people with disabilities don’t use a wheelchair
In the UK, 93–95% of people with disabilities are not wheelchair users. The Visability 93 project wants to change the wheelchair symbol so that it is inclusive of all disabilities, visible or invisible. They hope that as a result, more people would be able to access the services they need, without being questioned.
Public places: Priority seats in transports, accessible toilets and disabled parking spaces
It’s easy to find articles about people with invisible disabilities being treated badly by the public assuming they are abusing the system.
Student with stoma accused of taking drugs in pub
A student who was accused of taking drugs while using a disabled toilet at a Wetherspoons pub is calling for better…
Why we need to raise awareness of invisible disabilities
A while ago I shared the open letter to the woman who tutted at me for using the accessible toilets and then started a…
Some initiatives are trying to help
Blue Badge scheme has been extended to hidden disabilities, including autism and mental health conditions.
In the transports
For example, Transport for London created a badge and a card stating “Please offer me a seat”. You don’t have to prove you need it. It can empower some people to ask for a seat and if you’re lucky, someone might notice it and you might not even have to ask. But a lot of people using it seem to still feel judged or get weird looks.
“I’ve only used it a few times, when I have, I can just feel people staring at me, I’ve never used it when the trains have been particularly busy so couldn’t say whether it actually works or not, but I’ve never felt more judged.” — Caitlin
‘Happy to move for you’ is the same idea but for people who are happy to offer their seat to someone who might need it. I really like this one. Ellie Kime came up with this badge:
Or the initiative from the Heathrow airport and their green lanyards with sunflowers. Again you don’t have to prove you need it.
Crohn’s & Colitis UK has launched Not Every Disability is Visible inspired by campaigner Grace Warnock. They ask UK’s major supermarkets, restaurants, pubs and travel hubs to change their accessible toilet signs to highlight that Not Every Disability is Visible.
You can get involved:
I know a few people who had tried at their work place to get colleagues with disabilities to do some usability testing for them. They had sent an email to everyone, requesting volunteers. Even though they knew from HR that there are actually people with disabilities, they had no answer.
Maybe people didn’t read the email, or were not interested. But because it seems to happen quite often, my assumption is that most people don’t want others at work to know they have a disability. Or to be observed by colleagues while struggling doing a task. Or fear they will have to explain their conditions and maybe get defined by them afterward.
The expectation that everyone wants to get fit or lose weight
At work, there are often lot of initiatives for employees to get fit or lose weight. How do you go about turning these down, when you don’t want to disclose that you have an issue preventing you to take part?
We should have walking meetings!
A quick Google search for “walking meetings” will return lots of articles about how great they are, but none on the first page seems to take into account that some people in your team might not be able to do this.
By presenting this like a great idea, with most in the team jumping in, others might find themselves in a position where they feel they have to explain themselves if they don’t want or can’t take part.
“I’d rather be thought rude than detail to a colleague why I’m not folding chairs and stacking them against the wall at the end of the meeting.” — Hope R. Henderson
We should always be mindful that we’re all different and offer alternative or a way out.
As a person with hidden disabilities, is it your responsibility to educate others?
Some people with disabilities (visible or invisible) are happy to talk about it openly. But they can get tired of explaining again and again.
There is also quite a difference between educating family, friends, colleagues compared to complete strangers in the public transports or on the way to the toilets!
“Unfortunately, people often judge others by what they see and conclude a person can or cannot do something by the way they look. This attitude can be equally frustrating for those who may appear unable but are perfectly capable, as well as those who seem able, but are not.” — IDA website
Social media can help spread the word and raise awareness. Having more representations of these disabilities and the impact on people’s daily life in the media, TV, and films would also make a difference.
We need to spread the message that you can look OK but might actually be struggling or look weird but just trying to cope being in a stressful environment, look drunk but just be dealing with neurological problems.
Don’t assume. Keep an open mind.
So, should you have to ‘come out’ as disabled when you have an invisible disability?
No. Of course not.
“Knowing someone has a disability more often than not changes the way you perceive them. Whether the reaction is discriminatory or empathetic, this unwanted attention can make life feel suffocating. In being open about our disability, we unfortunately have to accept the reality that people will treat us differently.” — Isabelle Jani-Friend
A short answer in this article:
Coming Out as a Person With an Invisible Disability
You get sick. Then you get well, or die. At least that is how we imagine it. Disability leaves us somewhere else: not…
“Most days, most places, I don’t want to tell. I don’t want to tell the driver or the scowling elderly passengers why I need a seat on the bus. I don’t want to explain that I’m not there to teach the yoga for disabilities class. ” — Hope R. Henderson
A longer answer here :
Coming Out As…Disabled
Coming Out As…Disabled For years I’ve been told I don’t look like a lesbian, a comment widely used to invalidate the…
“So why am I so concerned about keeping my disability as hidden as possible, when so many people share disability? The primary reasons are similar to those for staying in the queer closet: protecting employment, worrying about how people will treat you if they know, fear of losing friends, fear of isolation, fear of being seen as damaged, fear of being pitied.” — Victoria A. Brownworth
Another article worth reading is the experience of Alison Stine who was born with less than 50% hearing due to a congenital issue:
You Talk Real Good
This essay was supported by the Economic Hardship Reporting Project, a journalism nonprofit organization. Disability…
“I pass as hearing. I don’t wear hearing aids, but even if I did, they would be hidden by my hair. I’m a younger, ‘healthy-looking’ person — not the image that is conjured up when most people think of the hard of hearing…”
“…Because I pass, I am part of no group, without a clear identity or sense of belonging…”
“…When I do disclose my difference, I try to make it casual. I start with ‘It’s not a big deal …’ Still I watch abled people’s faces fall, time and again. A disabled or different person has entered their space — interrupted their life of not paying attention, not considering, or maybe not even caring — and suddenly everything has been upended…” — Alison Stine
But if you feel like disclosing your disability will help you, then go for it:
More on the subject
Work and disability
Almost half of working-age people with disabilities in the UK are employed. But this figure should be higher. With the…
How do you define invisible disability? | invisible disability definition
People often ask us to define invisible disability. In simple terms, an invisible disability is a physical, mental or…
New blue badge rules to benefit people with hidden disabilities
People with hidden disabilities could soon be entitled to blue badge car parking permits under Department for Transport…
This post was prompted by a call for lightning talks ideas from the A11Y Scotland conference’s organisers .
Edit 25/10/19: I did give a 5 min talk about this today at the conference which was a great event. I’ve done a write up here.
Edit 03/11/19: I’ve added a part about the Not Every Disability Is Visible campaign. Plus the ‘Happy to move for you’ badge.