#InvisibleDisabilitiesWeek – a few things to remember, if you please……..?

This last week, if you didn’t know, was Invisible Disabilities Week. Many disability charities have spent the week campaigning for more awareness of the disabilities that you cannot see you straight away. They call them invisible or hidden disabilities. There are many preconceptions about these; people presume that if you have a disability, they will be able to see it straight away.

Obviously if you’re in a wheelchair, people presume that you have a particular type of disability, maybe a paralysis of some kind. If you have a white stick and a guide dog then you are probably safe to assume that they have some kind of sighted disability. But only a very small percentage of disabled people have what you would class as an ‘obvious’ one.

According to the WHO (2019)

⊗ 1.3 billion people are affected by some form of blindness and visual impairment. This represents 17% of the world’s population.

⊗ 466 million people have a disabling deafness and hearing loss. This represents 6% of the world’s population.

⊗ About 200 million people have an intellectual disability (IQ below 75). This represents 2.6% of the world’s population.

⊗ 75 million people need a wheelchair on a daily basis. This represents 1% of the world’s population.

Only 1% of disabled people use a wheelchair or scooter so what is going on with the rest? 🤷🏼‍♀️

So let’s look at some of the most obvious things to avoid and more importantly, to remember after this Invisible Disabilities Week…..

“But you’re too young/pretty to be disabled “

Just because you are young or pretty or both doesn’t mean that you can’t have a disability! This is a common preconception that all disabled people are old, ugly and frankly a bit decrepit!

Obviously when you read it like that, it sounds ridiculous but you will be amazed at how many times both myself and other members of the disabled community have been told this. As if age is a barrier or a pretty face stops you from being disabled or a full face of make up means that your disability or chronic illness has suddenly disappeared.

“What a lovely smile, glad to see the pain is going/you’re feeling better“

Just because you’re smiling or laughing doesn’t mean to say that your pain has gone. People with chronic pain are experts at living with pain levels that you would not believe or be able to function at. So raising a smile or laughing at a joke just means that they have learnt to cope with their pain level and can still laugh. If you stop and think about this, this is a real feat of bravery; imagine being stabbed every couple of seconds into your hip or spinal-cord and still being able to laugh at what your friend is saying. Isn’t that amazing?

“You can’t be disabled, you’ve just stood up out of your wheelchair”

Just because you’re in a wheelchair, doesn’t mean that you can’t stand or walk a few steps. There is a huge amount of people who use wheelchairs as a mobility tool that can stand with a frame or walk with crutches. They are just not able to walk longer distances or around the supermarket so don’t be gobsmacked next time you see somebody in a wheelchair stagger to their feet and reach for the top aisle, you haven’t just seen a miracle, it’s just the way it is!

“Come on, surely you can take a few steps, the entrance has only got two “

But just to confuse you completely, just because somebody is in a wheelchair doesn’t mean that they can actually stand either. (Sorry) So many times I have been told that the place I am going to is completely wheelchair accessible only to find that it’s got two steps to get into the building. Some people genuinely think that you and your wheelchair can levitate and get up to steps when this is obviously not possible. Don’t guess or presume, ask the person if there is anything that they can do to help, we are not unapproachable monsters!

“What does she want to eat? “

Just because somebody is with a non-disabled person, doesn’t mean that you should speak to them first or ignore the disabled person completely. This is something that drives me completely mad; the amount of times that my husband has been asked what I want or told him how much the bill is when I’m the one holding up the money is ridiculous. Just speak to us, honestly it’s not that hard!

(And while we’re on the subject of other people just because we with a nondisabled person doesn’t mean that they are my carer either! We are allowed a sex life the same as you you know! ☺️)

“You’re not disabled, get out of this queue”

If someone is in the queue for a disabled toilet, please don’t assume that because they stood there that they are not disabled. There are many people with bowel conditions who need the toilet extremely quickly to avoid totally embarrassing situations and really don’t need you questioning them or you asking for proof that they should be there. Let’s just presume that everybody who is there needs to be, how about that for a way to live your life eh?

“Oh I can’t be bothered to ring her again, she’s always cancelling“

When somebody has or develops a chronic illness or disability, one of the many unfortunate side-effects is that you often need to cancel plans at the last minute as your invisible or hidden disability flares up and stops you from going. This is something that can happen time and time and time again and what we really need from you, is patience and compassion. We can’t help it, we don’t do it on purpose, we don’t use it as an excuse and yes it really effing pisses us off!

People with hidden or invisible disabilities spent their lives trying to just cope with what is going on to them whilst still trying to carry on a normal life. This could mean a total change of routine, lifestyle, financial issues, careers, everything. To assume that it only affects us superficially does us a huge disservice – we are constantly battling or paddling like a swan, elegant on top but going like a mad thing underneath.

Take a look inside yourselves; everyone is battling with something.

Everyone has something they don’t want somebody else to know about or be questioned on.

Let’s just remember that and just be kind, compassionate, empathetic, open and honest.

Don’t challenge, don’t assume, don’t presume……… just be kind ❤️

Some helpful charities……..

Action on hearing loss

Disability rights UK

Mental health foundation

National Autistic Society

Royal National Institute of the Blind

Scope

Cisfa

Mencap

The Disabilities trust

Seeability

Action Duchenne

See Disabilityrightsuk.org for a full list.

One comment

  1. Had to laugh when I read some of the sayings NOT to say. I’ve heard them so many times. “I’m looking good so I must be better.” I wish! It’s just that I try hard to look good. Maybe so you don’t have to see the pain.

    Liked by 1 person

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