All the world’s a stage, and everyone is the audience

Two weeks ago I took a pilgrimage up to my spiritual home, Bretton Hall, with two of my friends from University. This is where we spent two of our 3 years of University life; studying, partying and finding out who we were. I won’t begin to regale you with tales from that part of my life as we would be here for days, just rest assured it was a lot of fun and quite a messy time! We hadn’t been back for a while so decided to make use of the last bank holiday in June to revisit our old haunts and have a laugh. This entailed a necessary dirty night out in Wakefield, which was a lot of fun but reminded me of something I should address here in my blog.

What is the difference between looking or staring at someone and being watched?

It won’t come as a surprise to anyone to hear that people with disabilities, especially those with particularly visible disabilities like mine, are often stared at. I get it and if I’m honest I’m sure I do it myself sometimes, if you see something or someone different to you it’s a natural instinct to look at it. It’s a fascination especially if you haven’t seen it before. Children in particular are suckers for it! This is then often followed by a point and/or a “look at that mummy/daddy” etc etc. Does it bother me? A little. Does it upset me? Not really. It does, however, make me angry if a parent ushers the child away, clearly embarrassed, making it obvious that the parent won’t be sitting the child down to explain why I look different once I am out of earshot. It doesn’t ruin my day, the anger is momentary and I’ve forgotten about it and onto the next thing as quickly as it happened but it does annoy me.

There is a huge difference though to being stared at and being watched. This is something I became very aware of when we were out in Wakefield. Being stared at as you pass by is one thing but actively being watched while you are getting on with your thing is a whole other kettle of fish. Again, I’m totally aware that I look different. Not only am I short but I also use an electric wheelchair and to add insult to injury I’m quite loud, bringing even more attention to myself. I don’t help myself out sometimes! Add into all that, I’m often busy rushing from one thing to another on my own or I’m with friends having fun. Not the typical “helpless disabled” image many people still incorrectly have of disability. No wonder I stand out.

Whether that statistic I mentioned in a previous blog from Scope, that 43% of people surveyed said they have never spoken to a disabled person, is true or not my specific disability mixed with individual Sam-isms mean there aren’t many people who have come across someone like me before.

All that is understandable but picture the scene: my friends and I have just had a lovely meal out, had too many cocktails and have decided to move onto an incredibly cheesy 70s club to finish the night off with some dancing. We all studied Theatre and Performance so we aren’t shy. I would describe our style of dance of choice as “acting out” which means we like to act out the lyrics. Hilarity ensues. With these skills you would expect to get some attention but when that attention is directed at just one of the group it becomes a bit uncomfortable. Whilst doing our thing people stop dancing once they notice me and just stand and watch. Not for a few seconds, for minutes on end. They will move so they can get a better view of me and what I’m doing. They will actively ignore their own friends to fully take in what I’m doing.

This is when I feel uncomfortable.

It’s like you’re in a goldfish bowl being watched and you have two choices. Either you try your hardest to ignore that you’re being watched and not let it affect your evening or you act up to it to educate your watchers. You show them that you are having a brilliant time with your friends, just like them, so there is no need to watch as there is nothing different to see here. I often pick option two but it quickly becomes tiresome. I crave having a night out that doesn’t include having an audience, where I can melt into the crowd and get on with the night out we’ve planned without having to justify why I’m doing what I’m doing by showing my “audience” that I’m just like them! Once, when out with a large group of friends for a hen do, as we left a bar my friend was stopped by a guy who told her “well done for bringing her out with you” before I was told “God loves you”. I despair!!

This “watching” was taken to a whole new level last weekend as I drove my friend, her mum and my friend’s 4 month old baby to the airport. My friend was emigrating to Cambodia to be with her boyfriend and father of her daughter. Anyone who has seen my Instagram will be familiar with the gorgeous Indigo!

This was already a very emotionally fraught situation, which I was doing my very best at holding together. Unfortunately it was only made worse when we noticed a man in a white van drive past us on the M25 filming me driving on his iPhone. At first I didn’t think anything of it until I caught his eye and it became very clear it was me that was his object of fascination as he literally laughed in my face. What he intended to do with the footage I have no idea. Will it spring up on YouTube? Will it be shared amongst his friends on Facebook? Or will it just be a “funny” video he shows his mates down the pub? I have no idea, no control over it and no way of having a dialogue with him about it.

A huge mix of emotions sprang up when I was able to digest the experience a few hours later. I was shocked, upset, angry, frustrated, incredulous that it had even happened and felt really quite vulnerable.  Did he know that this one act and the look on his face would cause me to feel all of those things? I’m sure he didn’t even think about it. Maybe he doesn’t even care.

Last week I heard an interview with Taylor Swift on the radio where she spoke about the intrusion of fans on her personal life and how she deals with being filmed when out for dinner with friends. She said she tends to look right down the lens of the camera phone and that normally embarrasses the fan and they stop and give her the private space she wants. No such luck with this particular white van man.

Having a very visible disability doesn’t give you that luxury. There are some people who don’t see you as a “normal” person who is just getting on with their life just like them; I’m not a person who has feelings and might just want to do their thing without being constantly noticed, commented on or fascinated by.

This blog isn’t about my work, what I do or the people I work with but I hope that some of the work the company I work for does and the work of many people that I know will make some difference to how people with disabilities are portrayed on screen and viewed within our own communities and society as a whole. There’s no doubt that there has been a slight shift in how people with disabilities are seen since the coverage of the London 2012 Paralympics but we clearly have a long way to go yet.

We’ve got a long way to go before me and my disability is shrugged off as no more different than wearing an alternative outfit or having a different haircut. I’m not going to be completely ignored for a really long time but maybe the extravert in me wouldn’t be quite so happy about that! That being said sometimes it would be nice to melt into the background. It would be nice to be the audience rather than the one on stage every now and again.