Our Marvellous Misadventures:
This post has been a while coming, I have actually found it hard to write because there are so many things I want to say that I actually don’t know what to start. Then this week we went to the cinema and I realised what exactly I needed to write about.
Accessibility is normally presumed as how accessible somewhere is based on physical attributes, like door width, inclusive measures like specialist seating and changing units, but sometimes it’s to do with things we can’t see too, like changing movie names prior to a movie ending and causing confusion as to where someone was before visiting a bathroom.
This happened to us.
Firstly let me talk about parking, we have a disabled parking permit aka a blue badge. Although Ava is small we need that extra space beside the car to firstly open the door wide enough to get her out and secondly pull up her chair to the door to get her safely into it so she isn’t knocked down by a car. These spaces literally mean the difference between a straight forward trip to the shops or the swimming pool and a walk accross the car park from the far end to guarantee no one parks next to us, and an anxious riddled trip worrying about if someone parks beside us how am I going to get her back in the car without hurting her. So please if you have no badge don’t use these spaces, don’t block them, don’t just pop in for a loaf of bread or use them as a set down zone while waiting for someone else who popped into the shop. This can mean the difference between someone getting to go where they need to and being stuck at home.
Now to the rest of our trip, we ended up going to the cinema. Ava joined us, our local cinema has several sets of stairs, to make it accessible there is a lift. This is just brilliant, it means not having to figure how to manage access, however, when people use these lifts who are able to climb stairs it means that we can’t access them, or have to wait. We actually ended up crammed into a lift because some people didn’t want to use the stairs. I couldn’t even get near Ava to see if she was ok or not because the small lift that could ordinarily comfortably fit a wheelchair and their carer was also filled with others. I may be coming accross as selfish, but quite simply if Ava went into seizure, I had no way of removing her from her chair and if I did remove her no where to put her while she was in seizure, we have a risk of aspiration.
We now book our movie, as luck has it we end up in the only screen without wheelchair seats, bad luck I know, however this means that for us to enter that screen we are stuck literally in the space at the front of the screen under a speaker. This sounds trivial as it’s the only screen out of 8 without a wheelchair seat, but for us it is not trivial it is overwhelming for Ava to be in an environment so close to the screen and with so much noise. Ava went into a sensory overload. This is what a lack of disability seat did to us. You either put up with it, or you have to choose a different time, or movie or even just go home. I don’t think any able bodied person would have to worry about those issues unless the movie is booked out.
Some disabilities are invisible, like my sons who both have autism. They manage the issues life throws at them like pros, they actually amaze me everyday. We have given them coping techniques in order to overcome any obstacles placed in front of them like any other child, we have given them a series of protocols to follow for if they were to get lost or need to go to the bathroom so they can be independent. However when you give them as many tools as you can and still they are failed by society it hurts. This happened this week to us. Tristan is a very capable child, he is clever and well mannered, he navigates his society like a pro, but when little things trip him up and the fall back skills he has fail him, he becomes stressed. He has amazing problem solving skills and generally he figures it out because he can, but when he can’t he panics and becomes anxious and this is when he starts getting overwhelmed and a meltdown occurs. This was sparked off by a system of changing the movie titles above the doors prior to movies ending, it wouldn’t take 2 minutes to change and leave it till the movie is over. He went into fall back mode, he looked for an employee and asked them only to be told the movie he was watching wasn’t showing that day. He has communication issues so has no idea how to verbalise that he was actually watching that movie before going to the bathroom, so thankfully used his logic skills to work out that if he looked in each screen he would find it, he did that but the movie was over, so after all his hard work and hardship he didn’t get the reward of seeing the end. All that work for nothing. Imagine how much easier it would be if they hadn’t changed the movie title.
This may sound like I am complaining about little things, but to us they are not little they completely change our experience and it’s a daily occurrence. Little things we take for granted like not having to bump up and down kerb, being able to get in and out of the car with ease and safely, comfortably and safely using a lift, not watching a movie directly under the screen, not worrying about becoming lost if going to the bathroom due to a computer system. These all alter whether we can be included, whether we get to enjoy an experience without feeling left shoved to the edge of society, whether we have our needs met so we can join in.
I know what I experienced people with disabilities have experienced for years before us and yes it is getting better, but is it good enough? I don’t think it is, imagine having to plan each trip down to each detail, consider absolutely every eventuality to the point that an outcome could simply be having to come home because you couldn’t access where you needed to go, or became so overwhelmed you just shut down and can’t cope with your surroundings anymore. Now imagine that all the issues you are planning for could be easily rectified and become a non issue if people were more considerate to your needs, needs that mean extra energy is required to do tasks others find basic and easy to do. Now imagine that knowing you have extra needs that you don’t have to worry because society recognises them and has geared itself better to them and can now literally pop to the shops stress free or go out with friends stress free. It is the little things that make a huge difference, a big impact on whether an outing is enjoyable or not.