“Are you even disabled?”

Imagine the scene. You’ve got yourself all dressed up, new dress, new makeup. You’ve been stuck at home for months, literally, because you’ve been so unwell. Life has been crappy lately, you’re exhausted, you’ve been fighting for months to stand up to injustice. You’re a matter of weeks away from a court hearing at an employment tribunal and you just want one night to switch off. You want one night that isn’t about your health, or disability or watching your life and character being torn to shreds. You want one night to feel normal.

This was me in February 2017. I wanted to share what happened to me that night in this blog.

The night it happened.

At the time it happened I shared my experience on social media, but I took very little action other than that. I regret that, because I faced an injustice that night and I had an opportunity to create awareness and challenge discrimination. I chose not to take it because I was so worn down from challenging other discrimination I felt I’d experienced. It felt impossible to do it all. Fighting discrimination, stereotyping and misconceptions surrounding disability can feel like a never ending, uphill battle but it is one which must be fought to change things.

I just want to enjoy nights out like a normal person in their twenties.

I cannot remember much of that night, because it was over a year ago and frankly my memory is horrific these days. I blame brain fog. However, Dave and I were enjoying drinks in town with two of our best friends Adam and Vanessa. We were in one of our favourite bars, it’s quirky, relaxed and has fabulous wine. You can’t ask for much more, can you? I took a selfie that night because I felt good, my new makeup was ‘on fleek’ and since I didn’t get to dress up that often I wanted to capture the moment. I intended to post it on social media for that reason. I ended up posting it to share another crappy experience of discrimination and highlight that not all disabilities are visible.

Out in my favourite city in the world.

At some point during our night I went to use the toilet, as we all do. I opened the disabled door with my radar key as I would normally do. The female toilets are up a lot of stairs in this bar, so I was thankful they had a disabled, radar key accessible toilet close to where we were sitting. I walked over to the toilet using my very unstylish, outfit ruining walking stick. When I first walked in I was struck by how someone in a wheelchair wouldn’t fit in that toilet because it was filled with junk, stacked chairs and sound equipment. I was frustrated by this and intended to mention it to staff before leaving in case a wheelchair user needed to use it. I have visited this bar again several times since and they continue to store things in the disabled toilet but that is another story.

Every outfit used to feel ‘ruined’ by my walking stick but these days I’ve learnt to rock it!

I used the toilet and then started to fix my hair and apply some more lipstick. As I was doing so a male doorman burst into the toilet, unlocking it to do so. Now to set the scene, this is a toilet that literally opens into the bar and is in full view of many tables. My first thought was ‘what the hell?’, followed closely by ‘thank God I had finished on the toilet’. The member of staff demanded to know ‘WHY’ I was in there. It seemed an insane question, given that it was a toilet and I wasn’t exactly going to be in there cooking tomorrows breakfast. Overwhelmed by the sudden appearance of a strange, very big man, unlocking the door and bursting into the very tiny space with me I stammered something about it being the disabled toilet. Then it happened, that heart breaking, soul crushing, totally disgusting moment. He said, ‘are you even disabled?’ I remember feeling sick with anger when he asked me that, I was so angry I couldn’t even speak. Unable to process what had just happened, let alone the perverse question he had then asked me, all I could do was wave my walking stick in his direction. Seeing my walking stick he quickly left and shut the door.

A toilet should be private and safe when you are out, now I wedge my stick by the door to warn me if someone tries to comes in.

I remember standing there, tears in my eyes, heart racing from the fright he had given me and the anger at what he had done. I literally felt crushed. Who the hell was he to do that? Why did he think it was okay for a man to burst in on a woman using the toilet? That in itself is hugely problematic and in hindsight, for that alone, I should have taken action against him. Why did he think it was okay to get the master radar key from behind the bar to open the toilet door? I had used my own key, why the hell would I even have one if not disabled? Why did he think it was okay to interrogate me in a place that should have been private? Why did he think it was okay to make me feel afraid and unsafe? Why did he think it was okay to ask anyone, male or female, if they were actually disabled? None of what he did was okay, but why did he think he could decide if I was disabled or not from just looking at me? What if I hadn’t had my walking stick to ‘prove’ it? What if I had been having a good day and not been using it? What would he have done? Would he have dragged me out and publicly shamed me?

What if I hadn’t had my walking stick that night? Would I not be disabled anymore?

I am still haunted by this experience more than a year on. I now rarely go out without my stick (even on a good day) because I feel like I need to ‘look disabled’ to prevent it happening again. That is not okay, and it is time for me to stop doing that. The first step is sharing this on my blog and sharing how this event has continued to impact my day to day life. I now triple check toilet doors are locked behind me and wedge my stick under the handle. How ridiculous is that? I feel I must barricade myself in just in case some random stranger feels the need to walk in and validate whether I should be using that toilet or not.

I did report the incident to staff. I was mortified, and I hated that I was crying in the middle of a very busy bar. I felt humiliated. I explained to staff what had happened and why the various aspects of the incident were not okay, even though to any decent human being it should be very apparent why none of it was okay. The staff were very apologetic, despite having given the doorman the key to open the door. They said they understood why I was so upset but like I said to them at the time, being young and having a disability is hard enough.

Being young and disabled is hard, but we make the most of it. Even in a wheelchair we find ways to be crazy and have fun.

After the incident someone contacted me from my social media post and confirmed that no doorman is allowed to open any toilet, regardless of it being disabled, male or female, while it is in use. They can knock to see if it is in use or check you are okay but not enter it. In hindsight I should have followed up my complaint with management or the company who provide doormen for that bar, but I was too exhausted and frankly given every other battle I was fighting at that time I didn’t have any fight left in me.

I’d love to tell you this is the only experience of discrimination I have experienced on a night out, but it is not. I’ve had a doorman laugh at me for asking for a seat and ask me if my legs were “gammy”. I’ve had several people continuously bang on the disabled toilet door to ‘hurry me up’, despite shouting back the toilet was being used. I’ve had dirty looks and comments about not looking very disabled when using a disabled parking badge. I experience things like this every day, and so do so many other people living with chronic illness. Let me tell you, life is hard enough without the added judgement or humiliation brought about by these incidents.

So many people with chronic illness experience things like this on a daily basis, something has to change.

Previously I’ve had the mentality of ‘pick your battles’ but this blog is giving me the confidence and the means to fight all battles of discrimination. They all matter, every single one is not okay no matter who it happens to. Not all disabilities are visible and even without a walking stick I have every right to use a disabled toilet, or a disabled parking space. I am more confident these days and when someone bangs on the door now, I stop in the door way and make them listen to me about why their behaviour is totally unacceptable. This often results in people looking shocked or like they want the ground to swallow them up, but I hope it makes them think twice before doing it again in future.

My friends and family don’t see my sticks, they just see me.

If you’ve experienced anything like this I’d love to hear from you, I’d also love to hear your tips on how to deal with it when it does happen. If you have a chronic illness, disability or invisible illness I urge you to politely but firmly speak out when you experience things like this. It is not okay, and we deserve better. If you don’t have any of these things but witness discrimination or an incident that is not acceptable, speak out too. It falls on all of us to challenge injustice and discrimination. The world would be a far better place if we judged less and showed kindness more. I urge you to be the change you want to see in the world because together we can make a difference.

Do I look like I have a disability? I wanted to post this photo because it captured my new makeup that I bought this week, it showed off the effort I made to feel confident and good about myself. Instead I'm posting with yet another crappy experience of discrimination, and quite frankly I am SICK of doing this. I'm so bored of discrimination being okay. Tonight I used my radar key to open an 'accessible toilet', as I so often do. I used the toilet, as we all do, and was busy fixing my hair and reapplying my lippy, when a bouncer burst in (unlocking the disabled toilet door) and demanded to know 'why I was in there'. Horrified at a man bursting into the toilet whilst I was in there I responded 'it's a disabled toilet' to which he responded 'are you disabled?'. All I could do was wave my walking stick in his direction, and he quickly shut the toilet door. Why is it okay for a man to burst in on a woman using the toilet? Why is it okay for him to obtain the radar key from behind the bar to do so, despite me using my own personal radar key? Why did I have to explain myself in that private moment? Why did I have to wave a walking stick in the air to 'prove' I was disabled enough? What if I hadn't been using my stick tonight, if I was having a 'good day'? What was he going to do? Drag me out and shame me?! I approached staff about it and explained why this was NOT okay (it's very obvious why it is not okay). They were very apologetic (despite giving the bouncer the key to open the door) and understood why I was so upset. But as I said to them, being young and having a disability is hard enough. This is not the first time I have had an experience like this on a night out. Previously I have been of the mentality 'pick your battles' but I'm sorry enough is enough. Not all disabilities are visible (as I stated to staff) and even without my stick I have every right to use that toilet. Tonight I wanted a normal night out with some of my best friends, but once again I am left with a sour taste in my mouth as I see, again, first hand the challenges young disabled people face. #invisibleillnessaware #inflammatoryarthritis #disabilityrights #discrimination #chronicillness

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