I commute on public transport every day. Public transport in my city is fine (save for the run-of-the-mill infrastructure woes), but I am reaching the stage where I wish I had ‘please, please give me your seat’ tattooed on my forehead.
I don’t blame people for not noticing; there’s nothing to notice. I have fibromyalgia, and to anyone else, I look like a healthy 20-something woman with boundless energy and her whole life ahead of her.
Fibromyalgia is an incurable illness affecting the central nervous system; it malfunctions and sends incorrect pain signals to my brain, so I experience severe pain all across my body 24 hours a day, 7 days a week. In addition, I get severe fatigue, headaches, memory loss, brain fog, nausea, and more. People often ask me what the pain feels like, but it’s so difficult to describe - the only thing I can liken it to is that unforgiving, inexplicably draining ache one gets all over their body when they have an extremely bad flu.
These badges could save thousands of people with invisible illnesses and disabilities be forced to validate themselves.
So, imagine catching the train while you have the flu: you’re dazed and zoning in and out, body pulsing with that exhausting ache that feels like it’s soaked through to your bones. That’s my trip to work every day — and by god I need to sit down.
Days where I don’t get a seat are regular, and if I’m having a ‘good day’ (pain present but at a low; fatigue not visibly dragging me down), standing for 45+ minutes zaps most of my limited supply of energy that I was hoping to save for my normal day at work. Standing up for my commute on a ‘bad day’, where most of my symptoms are flaring up, I feel like I’m going to faint from the pain or fatigue. I have fainted in public once, and it was beyond terrifying.
I have in the past asked for a seat. Some will begrudgingly stand, some politely say no, others laugh in my face, and some ask why they should.
I have in the past asked for a seat. Some will begrudgingly stand, some politely say no, others laugh in my face, and some ask why they should. It’s a fair question considering I look healthy enough, but the energy it takes to explain this - what fibromyalgia is, why I look ‘normal’, why disability isn’t always visible, and why they should therefore stand for me - is enormous. It’s traumatising having to validate your illness and body and person like that to a stranger, so instead I end up avoiding that situation, and standing and making myself sick.
I believe that a possible resolution for this is public transport badges for invisible disabilities. These simple badges have been requested around the world for years, including in Australia.
Disabled people have even started making their own badges to try to remove the daily situation of having to choose between excruciating pain and discomfort, or having a difficult and traumatic conversation about their body with a complete stranger. Asher Wolf, who has Ehlers-Danlos Syndrome (a connective tissue condition that causes hypermobility, as well the joints being prone to dislocation), has released a range of invisible disability badges on Creative Commons for anyone to use, designed by software engineering student Saffi Bannister.
"I encounter huge resistance from people over giving up priority seats, even when trains aren't fully packed. People don't consider the needs of others," says Wolf. "Each time I get on public transport I am forced to verbally identify my disability as part of my request to people to offer me a seat. And I find that a really unsettling experience."
Each time I get on public transport I am forced to verbally identify my disability as part of my request to people to offer me a seat. And I find that a really unsettling experience.
"People are generally a lot better about providing accommodations if they can see you are disabled, and the badges are just a way of signalling you are," explains Bannister. "Especially young, 'healthy looking' people will be assumed to be abled unless they give their medical history to strangers. I barely want to talk about my medical problems to doctors, let alone strangers in the hope that they might have the decency to let me sit down and not be in pain."
This creative community action is making impressive change, but unsurprisingly, there is the potential for less-empathetic commuters to refuse to take handmade creations seriously. I believe these badges need to be implemented officially by the public transport systems in each state, so people with disabilities are protected and safe on transport.
This isn’t as tough as it sounds. In fact, public transport systems in both London and Toronto have implemented them within the last three years. These badges say, ‘Please offer me a seat' — simple and to the point. Londoner James McNaught, who made his own badges while he was going through cancer treatment, said Transport for London implementing official badges and cards made a "real difference to the lives of people undergoing drug treatment or with longer term conditions or disabilities".
It may not, of course, completely solve the issue — as most of us know, public transport hosts some hellacious cretins who wouldn’t stand up if their own grandmother asked them — but we have to try something, and I’m tired of deciding whether to risk fainting or being asked to 'prove' my health issues.
These badges could save thousands of people with invisible illnesses and disabilities from being forced to validate themselves as human beings in order to save themselves from harm.
Something this simple could make the day-to-day experience of people whose lives are already tougher, extraordinarily easier. Why wouldn't you want to do that?
