Physically speaking my muscles are always tense to it is very difficult for my body to relax, this is part of my condition. So by that logic you could very easily say that I never relax.
Emotionally, mentally, I suppose I write, listen to music, watch crappy TV. There’s nothing I do to relax that is different from the way that anyone else relaxes.
I guess the point in relaxing is to do what you enjoy, and that’s harder than it may seem sometimes. But I do try and guess that’s the point.
This one’s simple for me there’s no escape like music. It transports me somewhere where I am not limited by my body or the world that I find myself in.
I want to combine this question with another writing prompt that was put out recently, simply because the answer to both is, Music.
My favourite genre of music is hard for me to decide as I love most genres. I would say I love a good acoustic cover which puts a song into a different genre more than anything. I love personal interpretations of songs.
I know this is not specifically a genre but I honestly feel like this is the most I am able to answer this question.
What activities make you looose track of time?
The answer to this question is obviously music. As I have mentioned before I have something known as Maladaptive Daydreaming which for me is extremely triggered and prolonged by music. In relation to this question, I have to be careful balancing how productive I want or need to be with a task, in order to determine whether I can listen to music while doing it.
As someone that grew up in a very busy home, I find it difficult to work in silence. This means I often use TV shows to fill the silence and help me focus, as they are a lot less likely to trigger my Maladaptive Daydreaming.
Honestly I’m passionate about a lot of things. If I think freely I think about dancing, music, writing, education, my pets, Inclusion. I could honestly probably keep going.
You’ll have noticed first on this list is dancing. I think it will always hold a special place in my heart. I used to dance as a child, professionally. And the freedom that brought me sometimes feels unmatched to any other freedom I’ve ever felt.
But there’s no career in wheelchair dancing. And try as hard as I wanted I was never going to be able to be a non disabled dancer was I? So there’s no career there for me either.
So I needed to find something else, someone else to be, and for the most part I did.
Sometimes it feels like my disability took my passion from me, other times I feel like it gave it to me.
It’s the reason I write, I think. It’s the reason inclusion matters to me. I even think that it’s the reason my pets matter so much to me. They see me for me, not me disabled, if that makes sense. And well music, I suspect that’s left over from dance isn’t it? But music’s wonderfully freeing so I’m not complaining.
But ultimately my disability took dance from me. Even if I found I way to be a professional wheelchair dancer, which I love and would do in a heartbeat by the way. I would never be able to be the dancer I could have been in my head, you know.
I’m not trying to be depressing. I think it’s important to deal with and accept these kinds of emotions, the disenfranchised grief of the life I was never able to lead. And that I can do so while also living my best at the life I was dealt. It’s a balance.
I think its a problem in the disability community that I’ve seen to force positivity all the time in our situation when it isn’t realistic. I think it comes from trying to prove to non-disabled people that we are happy as we are, and that we deserve to exist without the world trying to change us. Which is of course absolutely true. But we are also allowed to feel bad sometimes as all humans do, to wish life was a little easier or different. I think that’s completely normal. And not allowing ourselves to feel that if we do is trying to hold ourselves to higher standards than anyone else.
All this said, I think for me my passions change, they have to. For me to live my life. Today I’m passionate about having a good day, and I think that’s enough.
I say this because I experienced verbal abuse for my online activism, followed by the most accessible concert I have been to thus far.
I call my Facebook posts activism, because that’s what others have called what I have been doing so online, but honestly I’m just telling my truth. If others want to call it activism that’s for them to decide. But whether or not you agree with what I’m doing, it should be taken with the understanding that I’m posting on Facebook for a specific reason, I don’t think shouting at someone in the street is an appropriate response to this. But it is perhaps one I expected, that’s not to say I wasn’t massively shocked by it when it happens. I can tell you this much though, one person shouting at me or several for that matter, isn’t going to stop me.
Now for the concert, it was amazing, and the opening act is definitely a new music interest for me, which is always nice. Hearing some of my favourite songs acoustically and some wonderful new ones was an amazing experience. That said this blog is of course about inaccessibility or in this case surprisingly, accessibility.
Image Description: the image shows a blue-tinted stage with a drum chair and several microphones and wires visible. The drum has the name Anson Seabra written on it. The chair has a teddy on it. At the top of the image is black text on a white background that reads “Look how close we are!!!!”
The picture above shows how close the accessible area of the crowd was to the stage. This made me so happy as in previous concerts even when I have got there several hours early, I have ended up near the back due to this being where the accessible area is. In all honesty it annoys me that I was made to go in the accessible area at all.
I can see why some people would benefit from having a separate accessible area, but in all honesty I would like to part of the crowd as a whole. When I have enquired about why I have to be in a separate area in the passed I have been told it’s for my own safety, which I think is probably common sense to translate that it’s so the venue doesn’t get sued or something if I were to become injured. If this is the case, I think I should be able to sign a waver of some kind that says I am aware of the possibility of getting hurt, and that I take full responsibility if that were to happen. I would like to take that risk, thank you very much.
But anyway, back to my first positive experience. I was there several hours early and therefore deserved to be close to the stage, as that was the whole reason I got there as early as I did. I was so happy to be in the front.
I hope the rest of the events I have this year are equally accessible. I’m not holding my breath though. But if nothing else goes right, at least this did.
10 out of 10 for accessibility Academy 3 Manchester.
In other related updates, I did receive a reply from the complaint that I put in for the Scouting for Girls and Olly Murs concert. Lets just say I am not happy about the response that I got, but I’m not exactly ready to deal with it yet.
It would not surprise me if they make it specifically difficult as a deterrent for people so that they don’t complain. Either way I’m not giving up. It’s just not for today.
One day I will be able to go to a concert and not have an access problem, but it seems Friday was not that day.
We arrived half an hour before the start of our concert to learn that our group of three had been split into areas, despite clarifying on the phone that we would only purchase the tickets if our group could sit together. We were told that the three of us would be able to sit together, if we were happy to squeeze into an accessible space for two, and this in itself would not have been a problem, if it was the only problem.
The space we were shown to had a camera placed in it, as the event was been live streamed, a picture of this is shown below. It seems this space was double booked as accessible seating and press.
Image Description: A picture showing a camera placed on a tripod on a platform.
It took more than 20 minutes for the staff to find somewhere else for us to move into, which resulted in us missing the first songs of the supporting act, who I was specifically looking forward to seeing.
I don’t think this would have happened for the non-accessible seating, as able paying guest would be unlikely to loose there seating to camera equipment. Our treatment at the event was there fore ableist and I am in the process of putting in a complaint.
Disabled show goers, already do not get to choose where we want to sit, we already have to compromise by sitting in the accessible seating area, that is usually near the back. We are told this is for our safety. But I personally believe it is to stop the event organising being sued. I personally wish that I could sign some sort of waver that would allow me to sit nearer the stage.
This specific event had seating near the stage, so I don’t really understand any of the logic as to why I had to sit near the back anyway. But at the very least I deserve to sit in the space I have booked.
So here’s something I’ve just realised as I sit in bed. I wanted my earphones.
But there were inacessible to me, in other words I couldn’t reach them. But instead of shouting my sister to get my earphones for me. I finished my drink and asked her for another, and when she came in to bring it to me, I asked her for my earphones.
I often do things like this without thinking. Think of something else I need, or sometimes create something else I need, in order to justify asking for the thing I actually want by asking for something I feel is more valid to ask for.
In doing this it has just occurred to me that I’m hierarching my own needs, deciding what’s important for me to need to help with and what isn’t. So I don’t waste the time of those looking after me with something unesssary.
This is obviously now, it occurs to me, internalised ablesim on my part. Convincing myself that I some things I need or want don’t matrer.
I’m going to think on this so I may come back to it.
My Inaccessible Life 