I haven’t actually written about my disabilities and how they impact my day to day life for a while. This isn’t because they haven’t been affecting me, but simply because when I’ve passed comments I’ve found that certain areas of the disabled community (and society…. I’ll get there) seem to think it’s a competition of some sort and that some people just aren’t “disabled enough”; for what exactly I’m not 100% sure.
What I am sure about is that just because I don’t “look disabled” doesn’t mean my disability can be written off or ignored & invalidated and when I say the words “I am disabled”, I shouldn’t have to prove it to anyone.
As much as this is how it should be, it’s not how the world works. When a person has an invisible illness/disability, we are constantly having to prove to society how we are disabled and how it affects our day to day lives before people will even consider believing us.
The problem is that when society sees us out and about in public maybe with a mobility aide, they still see us; we’re out. For those of us who don’t use a wheelchair or mobility scooter 24/7 we’re seen as “not disabled”. I asked around a few of my peers – “When you hear the word “disabled”, what do you automatically think of?” every single person I asked mentioned wheelchair users, not being able to walk, body braces of various sorts and old age. I went further and asked “What’s the first thing you think of when you hear “Invisible Disability?”” Arthritis, Cancer and Mental Health Issues. That’s it.
It’s not exactly new; before my diagnosis I would have probably given the same answers, and these answers filter through to the next generation and the next.
I was travelling back from visiting my girlfriend. 16th June, Birmingham New Street to Stanstead via Stamford. I was sat in a carriage with the toilet a) because it was a seat and b) I had room for my large case and I wasn’t scrunched up. I was half way through the journey when the gentleman who was serving from the snack trolley directed a comment at me. He had noticed a lady get on at the last stop with a pram and small baby, I had too. The lady stood in the space where the doors were, I didn’t notice her looking for a seat she simply lent against a divider.
The snack trolley guy (I have his name, however I am omitting it from this blog*) started talking at me so I took out my headphones to answer what he was asking. He wasn’t asking a question at all; he was pointing at me and telling me I should move because the space I was in is reserved for mothers with prams/pushchairs, cyclists and disabled persons.
I was actually rather polite considering the thoughts raging in my head. I simply explained I am disabled and I cannot stand for long periods of time. He laughed and said (Quote) “I see no wheelchair you are not disabled.” I tried my best to explain that hey, not every disability is visible and I actually have a walking stick – I just cant use it and my case at the same time… not enough hands/arms y’see. Yeah, he didn’t care and continued; said I should be ashamed, I should offer my seat, I should stop lying etc etc.
I shoved my headphones back in and ignored whatever else he had said. I’ll be 100% honest – I had to hold off a full blown anxiety attack that would have no doubt resulted in me needing an ambulance by the next stop. I bit my lip so hard I drew blood and my nails were dug into my hands.
I tweeted to get out my anger and frustration. I was shaking; I’ve never been spoken to that way. The lady sat across from me told me to just ignore it, “not worth the hassle”. Well nice lady I’m afraid it is. I’m not gonna take that bullshit simply because I don’t look disabled especially from train staff member who shouldn’t have passed any judgement anyway.
He did come back about 20 minutes later; this was after he had noticed me getting his name from his badge – I did make it obvious. He apologised. I’m pretty sure some other people on the train passed comments to him and I distinctly saw the ticket man having words too. What was actually said I don’t know, I had my music up loud to ignore the world and stave off the anxiety attack that was still building and threatening to break loose at any moment. I was simultaneously texting my girlfriend who was on live chat with the train company reporting it to them.
He told me he was sorry – that he shouldn’t have passed a comment and he wasn’t accustomed to…. I cut him off. I’m not listening to some half-hearted excuse because he know’s (due to other’s comments) that he fucked up. I was, again, polite. I didn’t cuss, I had to remain calm. I told him simply that as much as I appreciate the apology I knew it was coming from a place of worry for his job, not genuine remorse for what he had accused me of. I continued that he shouldn’t ever pass judgement on anyone as you have no idea what another individual is going through and that one negative comment could tip them over the edge. I stated that reports and grievances had already been emailed and logged and to please leave me alone. He shrugged and replied “Well I’m sorry…” I think he continued, but again my headphones were in.
I got home and had my anxiety attack. Luckily by then, I had managed to calm down what was going to happen. Some of my rage had left me – meditating to Metallica really does wonders for the soul. I smoked three cigarettes in 15 minutes and managed to coherently put together an email of grievance and send it to the email supplied to my girlfriend via the live chat. I’ve had a reply; things are being done. I am not being ignored.
In those moments on the train I felt so small and like I wasn’t disabled enough all because mine is one that cannot be actively seen without looking closely. My anxiety was through the stratosphere; everyone in the carriage was turning to look and point at me – the girl accused of being a liar about her disability. I say girl, because I felt like a girl and not a 31 year old grown woman.
It also made me doubt myself. Am I really disabled? Do I really need a walking aide? Is this all actually in my head? Have I made this up? Am I a liar? I’m not kidding; I had a mental conversation with myself and had to convince this little voice that yes… I am disabled, I haven’t made this up and mental health is a symptom of the disability; not the other way around.
Like I said before; when society sees us out and about they see us out and maybe walking that day. Maybe we don’t need the wheelchair that particular day and only need a stick to help us balance. It doesn’t mean that the disability has gone away – it just means we’re having a good day; our pain isn’t too bad that day – maybe it’s a 6/10 and not a 9/10. Maybe we are so fucking resilient and hard headed and determined that we’re putting off the inevitable because we are just not fucking ready to accept that yet, god-fucking-damnit.
Whatever the reason – society doesn’t see us when we are curled up in bed in agony or too fatigued to move or eat. When showers are out of the question and going to the bathroom means crawling or dragging ourselves there because walking is just not an option. They don’t see us breaking down and hating ourselves because our bodies seem to hate us and are failing us. They don’t see our anxiety and depression, struggles just to live a so-called “normal” life. They don’t see us scrapping some of our biggest dreams in life, because we just know they cannot happen.
They only see us at our social best – and by that I mean we’re just about able to function on a basic level and do errands as long as we don’t have to be out for too long and please give me my venti-coffee-mocha-frapp… but any “normal” healthy person suffering the same problem randomly, struck down one day; They’d be crawling to a hospital crying for pain relief and unable to do anything.
Just remember that when you look at someone, that you have no idea what they’re going through. Just because they look “normal” doesn’t mean they aren’t fighting with their own bodies, demons, immune systems etc. Invisible disabilities are just that – invisible and there are many of us out there that have become quite adept at hiding them as much as we can so we don’t have to give educational lessons to strangers in the town, on the train, bus, cab etc.
When we say to you “I am Disabled” or “I have a Chronic (Invisible) Disability”, just believe us. Don’t call us liars. Don’t accuse us of being frauds.
And by the by… Getting disabled parking, bus passes, travel cards etc isn’t a “perk” of being disabled; they’re a necessity to our every day life and you have no right to invalidate us based on how we appear to the world. There is no “perk” of being disabled.
* Grievances have been made and are being dealt with; due to that I am omitting his name out of respect for the company.