Invisible Disabilities and Gigs

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So, I went to a gig last week. I’ve been going to gigs regularly for years, but over the past year my hypermobility and dyspraxia are manifesting themselves in a way that is making it really hard and painful for me to stand for long periods now. I always buy a seated ticket when available, but I’m finding it hard to accept not being able to go to gigs which aren’t in seated venues. Why should I miss out?

There are some gigs that I understand, aren’t suitable for me anymore, but the one I was at last week was far from it. The standing section had little cut out sections at the sides for disabled people, with seats and a little area of flat ground standing area (the venue had a sloped floor, which was really hard to stand on). I had spoken about not being able to stand very well (I also have a broken toe at the moment!) with the venue beforehand, but they said seating was not available. When I’d booked the gig, I hadn’t broken my toe, so I thought I’d just about manage standing. (I would probably have been wrong anyway!)

When I noticed the little area, I waited until the main band came on stage, to see if anyone else needed to use that area, and only two other people had gone in. So, I stood on the flat bit of floor at the very back of the area, in case others needed to use the chairs, or wheelchair users needed floor space. I felt happy, because I could cope better with standing on the flat floor.

About 3 songs into the main band, a lady in a wheelchair came into the area, so of course I moved further back to make sure she had enough room, then the security guard came in and told me to get out and that I wasn’t allowed to be there, it wasn’t for me. Then a large group of people dancing pushed past me to get in the space. I can’t comment about whether they were disabled, because this is the point of this blog. I don’t blame the security man, but this is an issue which is very prevalent in society. I felt really embarrassed and like I had to qualify my disabilities to him. Sometimes I feel ashamed, as if they think I’m lying, because I look fine.

We are so quick to judge people’s health or ability without knowing anything about them. I look like a ‘fit healthy young woman’, but I’m not. Some days, I can’t walk very well at all, and have to tape up my joints which are in shooting pain. Other days, I’m at the gym on the cross trainer (not being the most graceful though, I must add!). It’s confusing for me, so I know it must be confusing for others.

A lot of health and disabilities fluctuate massively, so why can’t we get this is our heads? And it’s not just able bodied people who do this, people with health conditions do it to.

My friend has hEDS, Fibromyalgia and POTS and uses a wheelchair or a walking stick. She was sitting behind a counter at work and a man who was a wheelchair user buying a ticket from her said ‘you don’t know what it’s like to be disabled!’ I’m sure, he must’ve been having a particularly bad day and was feeling frustrated…but he shouldn’t have made that assumption.

I think the main thing to take a away from both mine and my friend’s experience is, to never make assumptions about anyone’s situation. I’m still training myself to do this, in other areas of life.

As for gigs, I really hope there are more areas like this in gig venues, because I thought it was a great idea, but there needs to be more communication between the venue and people who need to use those areas. It would’ve been better, if I could’ve privately explained my situation to someone and they gave me a wrist band for the area, avoiding embracing questioning.  I’m sure people with visible disabilities also get these sort of issues arise at gigs also. I sometimes look at venues and think ‘this is definitely not accessible’ and there’s really no need. I’m not expecting to be right up the front and stage diving, but I think everyone has a right to watch a show they want to see.

What happens when you assume…

 

 

 

 

 

Synaesthesia and Me

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I’ve had synaethesia my whole life, but didn’t realise until I was about 15. I just thought everyone had the same kind of concepts in regards to senses as I did. I can’t imagine life without it, and I feel like I experience something really special. I don’t pick the colour or sensations I get, they just happen.

If you don’t know:

Synaesthesia is a condition where a sensation in one of the senses, such as hearing, triggers a sensation in another, such as taste. There are at least 80 different types of synaesthesia

For example, some people with synaesthesia can taste numbers or hear colours. Some people give personalities to days of the week or their emotions have colours. Read more about different types here.

A wide range of different synaesthetic experiences have been reported and recorded – a typical example is someone who described experiencing the colour red every time he heard the word “Monday”. You may have read about musicians who can hear colours. synesthetes are often very creative. Some artists to have reported having synaethesia are, David Hockney, Pharell Williams and Billy Joel.

What it’s like for me

I’ve read a lot about people hearing colours, which I do get but my strongest sense is smells triggering colours. I have always smelt colours and describe a smell to my friends as  specific colours. Generally, unpleasant smells evoke this horrible yellow colour which repulses me, whilst clean and pleasant smells evoke different blues (which is my favourite colour, because of this). I have an incredibly strong sense of smell and can often smells things most people can’t, so sometimes there can be a bit of a sensory overload for me.

Apparently, this form of synesthesia is very rare. I’d love to meet someone who also experiences this, because I find it fascinating and there isn’t a lot of literature on it.

Colours are also slightly tied up in emotions for me. When I first met my boyfriend I had a strong sense of blue towards him. Whereas people that I’m not so keen on are very orange. A loud annoying orange. This is also a rare one, typically of me. Some people’s personalities have colours, but not all.

When I look at letters, they have a sense of being ‘odd or even’. This also makes days of the week and months odd and even. I think this is related to the shape of the letters. The ones with more circular forms are even, whereas long thin letters are odd. I used to see colours for the different months, but I know longer has that sense. I also visualise time in a loop with dates going around it.

Different notes don’t have specific colours, but the sound an instrument produces does. For example the drums create a spectrum of greys. Not all instruments have colours though.

What’s the cause?

It’s likely that the brain of someone with synaesthesia is “wired” differently, or has extra connections.

brain imaging study has shown that when some people with synaesthesia hear spoken words, a part of their brain normally used to process colour from vision lights up.

Synaesthesia runs in families, although it may skip a generation and may not affect immediate relatives. It’s possible for only one twin to have the condition, or for family members to show different types of synaesthesia. In summary, there is a genetic contribution to synaesthesia, but the environment is also important.

I only know one other person with synaethesia and we aren’t related. No one, as far as I am aware has this in my family. Saying that, I’m the first known hypermobile and dyspraxic person and one of the only who is left handed….so I like to be special.

It’s possible for people to “grow out of” synaesthesia: there have been cases of people claiming that they used to experience synaesthesia, but no longer do. For a while I thought I had. It had dampened down a lot for me for a couple of years, but recently is has grown stronger again. Which I’m pleased about, because I would hate to lose it.

Is it common?

Synaesthesia has been estimated to affect at least 4% of the UK population.

Researchers at the University of Sussex have estimated that 1-2% of the UK population experience colour when they see, hear or think about letters and numbers, and that synaesthesia is just as common in women as in men (read the study).

Do you think you may have it? Let me know :)!

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