As I was leaving a disabled toilet in a pub recently, a man turned to me.
‘Disabled toilets are a bit of a perk, aren’t they?’ he said with a sneer. It took me by surprise.
Like many disabled people, especially disabled women, I’ve been taught it’s always better to smooth things over even when I’m uncomfortable. So, I smiled blandly and moved away.
What I wanted to say, however, was: ‘No, disabled toilets aren’t a “perk”. In fact, they’re a necessity.’
I need the extra space to transfer out of my wheelchair. I need handrails and ramps. All these things not only make my life more manageable but they level the playing field just a little.
And anyone who thinks these things make us ‘lucky’ simply just doesn’t get it.
During or just after my birth, I suffered a stroke and the effects left me with cerebral palsy – the name given to a group of lifelong conditions that affect movement and coordination.
The condition means that I can’t walk, have limited use of one of my arms, and live with constant pain in my muscles and tendons.
As such, as I’ve grown up, I’ve needed a number of accommodations and adjustments just to make going about my daily business manageable.
At school, I was given extra time to complete exams and a scribe (someone who would write my answers out for me), and a computer with speech-to-text software.
A blue badge in my mum’s car meant that we could park closer to public buildings, which made it easier for me to shop and attend medical appointments.
And, of course, there were the ‘everyday’ things like disabled toilets, ramps and handrails and stair lifts that made getting about that bit easier.
There’s no doubt I benefitted from all this help, and I am of course grateful and feel fortunate to have been given access to these accessibility features. But I certainly don’t view them as ‘perks’.
Throughout my life, I’ve heard these benefits casually referred to as ‘perks’ by onlookers.
But lately, I’ve noticed that these disability aids have become the subject of online jokes – I’ve seen a rise in comments like ‘I wish I could fake being disabled just to get a fancy car’, or sarcastic remarks about how people ‘pretend’ to be disabled to collect money.
It’s disheartening to see such misunderstanding and mockery.
Little do these commenters know that oftentimes, these ‘bonuses’ that disabled people get, aren’t always available to us.
I can’t tell you how many times I’ve gone into a disabled bathroom only to find it filled with odds and ends, like mops and highchairs because pubs and restaurants ‘needed’ to store them somewhere.
Or when I’ve needed a disabled parking space only to find they’ve all been taken by cars without blue badges.
Then there’s the waiting for the wheelchair lift that’s broken, or being taken up by kids mucking around.
There’s the constant blocking of dropped curbs by cars or vans, which means I can’t cross the road where I need to, and sometimes sees me having to travel along the road instead, which can be dangerous.
I couldn’t count how many times people have become abusive because they don’t want to move themselves or their luggage out of the disabled spaces on public transport.
It’s exhausting always having to rebuild and ready myself for the next comment or negative interaction; I often find myself taking a moment to mentally prepare before I leave the house.
I wish people could see these moments before they declare that my disability comes with so many perks.
I wish they could have seen me, at just seven years old, begging someone to explain what I had done to deserve this? ‘Why did it have to be me?’
Or how, after enduring 14 surgeries on each of my legs to save them from being amputated at age 16, my hip bones jutted through my skin in such a way that I was almost entirely in bed for about a year, which was a gruelling and isolating experience.
I’d love for them to spend just one day in my shoes, to see just how much planning and pressure comes with living in a disabled body, and how every move I make must be carefully worked out.
To understand how, in my world, when I go out or travel, I often deliberately dehydrate myself and stop drinking fluids just in case there isn’t a bathroom for me to use. Would they still think of a disabled loo as a perk then? I doubt it.
But this is the reality I face every day. This is the world disabled people live in. So although I am proud to be disabled and content with it, it isn’t an easy or enviable life by any means.
Calling accommodations and adjustments I receive ‘perks’ is not just downright offensive, but wrong.
I need these things to get by, to go about my business as seamlessly as possible. And if, after all that, you still think these things are perks, then I’d quite happily trade places with you.
By all means take the disabled toilets, and blue badge, if you think it’s worth the trade.
If you don’t like the sound of that, then keep your ignorant comments to yourself and let me use my disabled toilet in peace. It really is the least I deserve.
Do you have a story you’d like to share? Get in touch by emailing jess.austin@metro.co.uk.
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