When you hear ‘disability’ you usually think: Wheelchair. But In the UK, 93–95% of people with disabilities are not wheelchair users.
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…
People with invisible disabilities regularly face problems in public places and at work because others don’t realise there are some things they can’t do.
The spoon theory
When you live with a chronic disease, your energy is limited. You will have bad days and good days. You need to pace yourself and plan ahead what you will be able to do that day. The Spoon Theory was created by Christine Miserandino to explain to a friend how it felt to live with Lupus, making one spoon an energy unit: If you are healthy, you start your day with an unlimited number of spoons, but if you’re not, you might start your day with 15 spoons on a ‘good day’. Every thing you do will take away some spoons, and when they are gone, you can’t do anyhting until the next day.
This video explains this quite well.
The take away: don’t assume someone can do something because they have done it the day before, they might be low on spoons…
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.
“I have been verbally abused on public transport because I have a white cane & use my phone. I have residual vision like 94% of registered blind people. I use accessible tech to magnify the screen.#BlindPeopleUsePhone” — Dr Amy Kavanagh
Student with stoma accused of taking drugs in pub
‘Being fat and ugly doesn’t count as disabled’ note left on a car: Why we need to raise awareness of invisible disabilities
Some initiatives are trying to help
The 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
From the website “you look ok to me”
‘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. Ellie Kime came up with this badge:
Photo by Ellie Kime
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.
Photo from their website
You can get involved, they provide material on their website
Our User Research team had tried 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.
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 an alternative or a way out.
More information about running accessible meetings and events in this Medium article, by Sheri Byrne-Haber.
As a person with invisible 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.
Why people often do not want to disclose they have an invisible disability?
“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
“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.” From Coming Out as a Person With an Invisible Disability – by Hope R. Henderson
More on the subject
Work and disability – NHS
How do you define invisible disability? invisible disability definition – Invisibiledisabilities.org
New blue badge rules to benefit people with hidden disabilities – the Guardian
This post was written to become part of the resources we will share on the Global Accessibility Awareness Day on Thursday 21 May 2020.
Written on 18 May 2020 by Stéphanie