Today is International Day of Persons with Disabilities. I can almost see you rolling your eyes, thinking: “Not another dedicated day for people who want to be special.”
There are some very good reasons why this day is much needed, though, so let me start with a bold statement. If you know someone who’s left-handed, but don’t know someone with a disability, the reason can really only be one of two things:
- Maybe you don’t know that many people.
- The people you know with a disability don’t feel safe enough to tell you.
Like I said, bold statement.
I feel very confident making it, though, and here’s why: about 8 per cent of the population in Ireland are left-handed, whereas, according to the 2022 census, 22 per cent have some form of disability.
‘I feel lost and lonely. I have begun to think there’s no reason for me here anymore … do any other people feel this way?’
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Globally, they are the biggest minority.
Disabilities, however, are not something we like to talk about or think about. Even though, if you are fortunate enough to live long enough, you are likely to experience some form of it. In recent years the discussion on neurodiversity is fortunately starting to come more to the forefront, and, very slowly, the stigma attached to ADHD (attention-deficit/hyperactivity disorder), dyslexia and ASD (autistic spectrum disorders), to name but a few, is starting to diminish. There’s still a very long way to go, though, and physical disabilities have yet to start their journey into acceptance.
I could throw all kinds of statistics at you here. I could talk about unemployment (the largest disability employment gap in the EU), higher risk of violence and lack of healthcare. You probably know all of that already, though, and if not, it’s easy to find if you’re interested.
Instead, let me try to tell you about the everyday stuff of having a physical disability. You know, the small things.
Some 15 years ago, out of the blue, I was diagnosed with epilepsy. The first person I told at work – trying it out before telling a line manager – just looked at me and said: “Oh, does that mean you’re a retard now?”
[ Epilepsy: What is it and what does the future hold as treatments improve?Opens in new window ]
The second person compared me to his cat, who had epileptic seizures too. When I was finally brave enough to tell a manager, given the “try-outs” weren’t exactly encouraging, I was told any slacking off would not be tolerated.
It’s no wonder that, depending on the country, as little as only 4-10 per cent of people with an “invisible” disability such as epilepsy, dyslexia or chronic pain feel safe enough to disclose this to their colleagues, manager or classmates.
Nine years ago I suffered a massive bleed in my brain during the surgery that was to cure me of my epilepsy, and as a result, the left side of my body isn’t fully functional any more. My disability is now very obvious as I wear a leg brace, walk with a stick and have an arm that’s there pretty much just for show.
One of the most beautiful things I’ve learned in the past nine years is that there are always people willing to help. In many ways, it has given me back my faith in humanity.
One of the most painful things I’ve learned is that people no longer see me as a person. They see my disability, and some people never get beyond seeing only that. For many people, I’ll always be “that disabled woman”. That also comes with people equating a physical disability with an intellectual one.
As an example, after I got accepted into a leading business school to do an executive MBA, someone asked if I got in because admissions had a disability quota (I actually managed to have a clapback ready in the moment and not an hour later, and replied: “No, but apparently they do have an asshole quota”).
[ Sacha Dekker: ‘The family are pointing and laughing at me – one mimics my spasm’Opens in new window ]
I’ve learned that I’m now “people like you”, and somehow, that’s rarely followed by something positive. Even if it sounds positive, it’s so ableist that you wonder how people come up with it. Like the time this woman told me: “It’s so great to see people like you still going shopping for clothes.” Or the guy who came up to me at the airport and, very confidently, said: “You should know, for someone like you, you’re very attractive.”
At work, a colleague told me, “people like you shouldn’t be in front of stakeholders; it looks weak” and when I once wanted to sign an €80,000 contract to book a venue to run a leadership conference, I was told “surely people like you can’t sign contracts this big” even though my business card clearly stated “Senior Director”.
I’ve also learned that accessibility cannot be taken for granted and that most businesses don’t cater to disabilities. A start-up I know that operates all over Europe, for instance, does not have a “physical disability” checkbox. This means that if I want to participate, I need to send them a special request every time (apparently, it can’t go into my profile) to ask them for an accessible venue.
Now, you might think: “Big deal, it’s just an email”, but imagine having to do that all the time. Imagine always having to call ahead to check if a venue is accessible because you can’t rely on it. Imagine having to triple-check if the room you booked at a hotel is indeed accessible so that you can have a shower at the end of a long day. Only to find that that in spite of all that checking, often it still isn’t.
Imagine your entire MBA class going on a trip and not being able to join them on the coach (where, regardless of age, is where all the fun happens on a “school trip”) for the site visits because few coaches in Ireland are accessible. Imagine always standing out, without wanting to, and constantly having to ask to find a way to fit in.
That’s next-level vulnerability.
As long as people with disabilities have to do all that, as long as they are afraid to disclose a disability at work or where they study because there might be negative consequences, as long as accessibility isn’t a given and as long as only 5 per cent of companies recognise disability as a diversity segment, we need International Day of Persons with Disabilities.
For the 1.1 million people in Ireland with a disability and the 1.3 billion people globally.
Because disability rights are human rights.