Since it began in 1945, the UN has promoted the well-being and welfare of people living with a disability. In 1992, it called for an International Day of People with Disabilities to be held every year on the 3rd of December. This year the focus is on people who are living with disabilities which are invisible.
Millions of People Are Living with Invisible Disabilities
According to the WHO, approximately 15% of the world’s population are living with some form of disability. A very large proportion of those disabilities are invisible.
There are so many conditions which cannot be seen. Mental health illnesses are invisible as are fibromyalgia, chronic pain, trigeminal neuralgia, epilepsy, cancer and so many other illnesses. There are actually more disabilities which can’t be seen than can. The problem is that many people are not aware of them.
People Are Often Treated Badly When They Are Living With Invisible Disabilities
A disability doesn’t always come with a wheelchair attached but, even as we approach 2021, many people still seem to think it does.
People’s health is sometimes disregarded, ignored, overlooked, misdiagnosed or even left untreated due to their disability not being visible. They are often considered to be telling lies, accused of fraudulently claiming disability benefits, accused of being drug seekers and even expected to prove their disability to strangers.
Living with any kind of disability is difficult enough, but when the person’s disabilities are invisible, they are often treated unfairly. They might receive abuse, face false accusations, discrimination and prejudices. It shouldn’t happen. But it does.
Please read: How To Treat Someone With An Invisible Illness
Using Public Toilets When You Have an Invisible Disability
Most of us living with invisible disabilities have witnessed that questioning look when we’ve used a disabled toilet. We can read their thoughts, “do they have a right to use that?” If we were in a wheelchair, we would not face those accusatory looks.
Last year, a 21 year old student was accused of snorting, dealing drugs and having sex in a disabled toilet in a well-known pub chain in the UK. What other reason could a healthy-looking young woman have for using a disabled toilet? She has ulcerative colitis and has a stoma. That’s a pretty good reason.
One of my blogger friends has also encountered problems using disabled toilets.
Everyone needs to use public toilets from time to time. Everyone. But disabled toilets are not just for wheelchair users. They are needed for a multitude of reasons. Some people need to get there quickly because they simply cannot wait. Some need extra space while others need to use the grab rails which only come in the disabled toilets. Other people need to have access to private washing facilities. Some people need a carer with them for assistance.
These things shouldn’t have to be explained. But we seem to be living in an age of accusations rather than understanding.
Invisible Disabilities on Public Transport
There are normally seats reserved on public transport for people with disabilities. But again, it would seem that the general public expects you to have a wheelchair to use them.
On a train journey, a disabled, but healthy-looking woman was asked to move from a seat reserved for disabled people. Hearing lots of tutting from fellow travellers, she felt embarrassed and gave up her seat.
In another incident, a woman who lives with chronic disabling pain asked a couple if she could have a seat on a busy train. The couple said, “how do we know you’re disabled?”, swore at her and called a scrounger. The train was packed. Nobody intervened. Nobody gave up their seat.
Disabled Parking Spaces – Where’s Your Wheelchair?
In order to park in a disabled space, people in the UK should have a blue badge. That badge is only issued to people when they provide medical proof of eligibility. In other countries, there are similar systems.
But some people, when they don’t see a wheelchair, presume that a person is parking there illegally. Some people even chastise a person for daring to have the audacity to get out of their car and walk into the supermarket after parking in a disabled bay.
I’ve seen the accusing looks myself. The thing is, I might walk into a supermarket looking relatively okay, but on the way back out, there’s no mistaking that I need that space.
Travel Assistance for People With Disabilities
Travel assistance at an airport is normally available to disabled people if it’s prebooked. Sometimes, getting that help proves difficult for anyone with a disability, but people with invisible disabilities are very often questioned and refused help.
I was travelling alone about 20 years ago. A motorised buggy collected the disabled passengers to take us to the departure lounge in an international airport. The woman driving said to me in front of other travellers, “Why are you getting assistance? You look healthy.” I wanted to say, “that’s none of your business.” But I felt that I needed to explain why I needed assistance. I did smile after it though because, to be honest, I was relieved not to look the way I felt.
Thankfully, I did receive the assistance I needed, but some people don’t get that. A blind gentleman with early-onset Alzheimer’s had a stressful experience at Heathrow Airport after he was told he couldn’t use the priority lanes reserved for disabled people. According to them, he was not in a wheelchair therefore, he was not disabled.
Sunflower Lanyard
If you are travelling in the UK, take advantage of the Sunflower Lanyard scheme for people with invisible disabilities. It might help to get the assistance you need.
Living With Invisible Disabilities is Enough – People Don’t Need More Stress
People don’t have the energy to argue, explain or provide proof. But they shouldn’t need to. They shouldn’t have to prove that they need to use that disabled toilet. Nor should they have to prove that they need that seat on a train or park their car in that disabled space or explain why they need extra assistance.
But people deal with that and more on a daily basis. Imagine going through your life thinking that people are pointing their fingers saying things like:
“Why doesn’t she work, she looks fine to me.”
“He’s just lazy. He stays in bed half the day but he’s perfectly fit and healthy.”
“She’s off enjoying a holiday, but she’s supposed to be in pain all the time.”
“He claims disability benefits, but he’s always joking and laughing. There’s obviously nothing wrong with him.”
“She smiles a lot. She can’t really have that weird illness she claims to have.”
“He says he has depression, yet he’s always going at the gym.”
“Look at her all dressed up – there’s no way she can be as sick as she says.”
These things really do get said about people who are living with invisible disabilities. People look. They make judgements based on what they see. Bad judgements. Harmful judgements.
A Disability is Between a Patient and Their Doctor
The reasons for disabilities, whether visible or invisible, are between patients and their doctors. If someone wants to share the reason with others, that’s fine. But they should never feel forced to do so. There should be no need to explain to anyone else. We should not need to prove our disabilities to others. And we should never have to face questions, accusations or prejudices because of them.
It’s unfair and it’s cruel.
I long for a world where we can treat each other kindly and equally. Don’t you?
To celebrate the International Day of People With Disabilities, an educational website called Twinkl wrote an article featuring a few bloggers with disabilities. I felt very honoured that they wanted to include me.
You can read their article here
Thank you to Twinkl for highlighting this important day. Hopefully, their article can help people understand just a little bit more about life with a disability.
(Find out more about Twinkl here)
Such a great way to go through some of the various aspects of disabilities that aren’t visible. Thank you for sharing my post on toileting terrors with invisible conditions too, that’s really kind of you.
I’m so sorry for your experience all those years ago when travelling. “You look healthy” might suggest something positive (because we’d surely look nightmarish if our outer appearance matched how we actually feel!) but it can be frustrating and pretty insulting. It’s an awful position to be put in and I hate that you felt you had to explain yourself. I would feel the same. I’ve been called out before and that sense of shame is powerful, leaving you feeling like you owe a reason and even an apology. That’s enough for many people with invisible conditions to forgo getting any assistance, using disabled loos, wearing an invisible disabilities lanyard. It shouldn’t be that way.
And you’re absolutely right about the level of judgement people can get. You’re damned it you do and damned if you don’t – if you’re miserable then you’re ungrateful, but if you’re smiling then you’re obviously happy and not sick.
Thank you for sharing that Guardian article about the woman with CF being asked to move on the train. She summed it up well with “…it’s clear there is a need to raise awareness of the existence and legitimacy of invisible illnesses”. I’m glad the paper published this to read a broader social consciousness. The media can be a powerful catalyst for change, but I still think what’s making the most difference on every level are people sharing their personal thoughts and experiences on blogs. You do a fantastic job here, Liz, and I LOVE this post. 🙏
Caz xx
What a fabulous post that explains so many of those awkward scenarios that should be so simple, such as feeling guilty about using a disabled toilet because we don’t look disabled. I hope many people read this and it makes them think twice about judging someone they don’t know. Thanks for sharing.
Shelley x