My invisible disability

I have an invisible disability. I was not open about this until recently, as I was always scared that I’d be pushed to give details which I am not comfortable with sharing. Usually, this is not the case. More often than not it’s the “what’s wrong with you?” response, followed by apologies for asking so bluntly – I personally find this reaction more amusing than offensive. What does bother me however, is the “you don’t look it” or “it could be worse” comments.

I want to just make two things clear:

1. Disability is not required to be visibly obvious to be true;

2. Personally, I feel that saying ‘It could be worse’ downplays the personal struggle that everyone has with managing their disability, whether it be visible or invisible.

There may be a heightened awareness of the existence of invisible disabilities, but there is not always that consideration when a seemingly able person is using assistance. Here’s hoping this blog raises awareness further and encourages people to think twice when they see someone who looks able using that extra bit of assistance.

What are invisible disabilities?

The Invisible Disabilities Association defines an invisible disability as “a physical, mental or neurological condition that limits a person’s movements, sense or activities that is invisible to the onlooker”. These disabilities are not rare, but often go unnoticed due to the fact that they can be completely hidden in some cases.

"A physical, mental or neurological condition that limits a person’s movements, sense or activities that is invisible to the onlooker"

According to the World Health Organisation (WHO), there are one billion individuals across the world who have a disability. And a US survey found that 74% of those with a disability don’t use any aids which visually signals this, such as a wheelchair or walking stick. Because of the nature of these, sufferers can be prone to misunderstandings, false perceptions and judgement. Examples of these judgements include being berated for using an accessible parking space or asking for assistance with transport when appearing physically able. In reality, there are many chronic conditions which make movement both difficult and painful, so having this accessibility goes a long way.

74% of those with a disability don’t use any aids which visually signals this

Difficulties facing invisible disabilities

Equally going a long way, is the ability to use accessible toilets without being seen as ‘skipping the queue’ or ‘using that which you don’t need’. Although not everyone will have this mentality, I can admit that I refrain from using accessible toilets for fear that someone will give me a judgemental look or comment as I leave, even though in many cases I probably should. Two problems are apparent here: judging and fear of being judged. Some people take it upon themselves to be ‘accessible support vigilantes’ and pass along judgement to those seemingly abled people who use accessible support. Because of this, there are invisibly disabled people who are afraid to access this needed support – myself included.

Difficulties with invisible disability can extend to the workplace. I consider myself lucky to be working with a good bunch of people and I know that should I need it, support and understanding would be readily available. However, many people feel they can’t disclose their disability in the workplace for fear of being judged or having to prove their ailment in order for it to be valid and true.

In 2011, a Canadian study found that 88% of people with an invisible disability had a negative view of disclosing this. Not disclosing can then exacerbate this issue when colleagues give pointed looks or comments if an individual is late due to unseen mobility issues. Fear of such judgement is understandable, and it is important that we overcome both the fear of judgement and the judgement itself. It can be very easy for employers to make this easier. Simply being flexible with time off and work hours can make lives a whole lot easier – just having that understanding is enough.

88% of people with an invisible disability had a negative view of disclosing this

Disclosing an invisible disability

Being able to choose how you share information regarding your invisible disability can be a blessing in disguise. It means people you don’t want to be aware don’t have to be, you’re less likely to get stared at (depending on the people) and it doesn’t get taken into account when making first impressions. I must say, this I am grateful for. In fact, having a disability that is invisible means that it’s easy to forget on good days. But like with all disabilities, there are the not so good days which make it hard to ignore.

So, I’d like to end this post with just a few tips for people who encounter those who have an invisible disability:

  • It’s ok to be surprised
  • Be respectful with your questions
  • Don’t make comments on their ‘normal’ visual appearance
  • Don’t ask for proof

 

And finally, if you see someone looking ‘perfectly able’ using assistance or accessible toilets/parking spaces, please consider invisible disability before passing judgement and perhaps even say something to those that do.