Thursday 25 July 2013

[2] In A Sea of People...


-- ...there is only you. --
If you're standing, you might want to sit down before I come out with a revelation. Yes, I'm deaf. I was born with no ear openings, ear drums and hear purely through the use of vibrating sound through my skull, directly to the auditory nerves. I refer to myself as a member of the hearing deaf community. So why is it such a shock that I love music, or that I used to sing in choirs?
Music has been part of my life since before I was born. My first concert was very simple - I was eight and a half months gestation in mum's belly. I came just a few days later, after Kylie Minogue and Jason Donavon frightened me out, most likely. I was then brought up on a diet of Bob Dylan, Van Morrison and lots of other folky type music. It wasn't long before I discovered other music, and although I went through a patch of liking low quality stuff, I found my way to some of the best music in the world.  I still often forget to pay attention to top 40 like artists, until I take a second listen.
My iTunes library is about as full as it could get, and I have seven or so CD's to be imported from gifts and me rewarding my music drought with lots of new stuff.  There's a huge part of being a music lover that those of us with a disability miss out on all too often.
The Script at the Odyssey Arena 2013
The Script at the Odyssey Arena 2013 (C) Michaela Hollywood
Going to a gig is a huge part of the student culture.  For a young student with a disability, this is often one of the main social outlets.  When I'm sick, I almost always manage to get to a gig between the hospital visits, the antibiotics and all the rearranging that has to be done.  From January to May this year my life was dictated by repeated pneumonia, which was overcome by going to concerts even when I knew I'd be in hospital a few days later whether I went or not.
But imagine wanting to sit with more than one person, and not being allowed to because you use a wheelchair, and having to text the people your with.  That's the reality of going to a concert, and it gets worse if the gig is standing.  Without seats on the ground floor, the Odyssey Arena wont let you on the ground floor, while small bar type venues like Speakeasy and the Oh Yeah Centre make sure you're safe, and with whoever you came with without the need to use extra barriers.
Then there are the heartbreaking cases, when there are gigs in venues where you can't even touch the front door, never mind support the music and artist that your non-disabled peers can.  There's even times when one of your all-time favourite artists, who has never played inside the UK, is playing in New York and you can't get that flight because of your disability.
With Bruce Springsteen playing in town, I wouldn't even venture to try to sort my dad and me with tickets as I knew it was an outdoor venue and if it were to be raining, I'd be a blue puffball again if I was even allowed to go at all.  So when I heard fans complaining that they couldn't get a beer I was furious.  Free water is handed out at most gigs like that, and I know it was such at Springsteen.
Complaining about beer is the very least of the worries of disabled people around the world trying to support, and enjoy, music.  When I realised that Matt Cardle's latest gig in Belfast was in the completely unaccessible venue Empire, I knew that I had to buy tickets for similar yet totally accessible venue Whelans.  This allowed me to support his music, and gave me a glimmer of hope.  As it happened, I was far too sick to go.  But at least I got to support the music.  If the gig in Belfast the next day had been accessible, I would have been able to go.  Instead, I went to the Lord Mayors Party where Cardle headlined, although I had to turn myself into a blue puffball for the event.
Seeing Matt Cardle in my puffball costume. (C) Michaela Hollywood
Seeing Matt Cardle in my puffball costume. (C) Michaela Hollywood
So, the next time you go to a concert remember this: there's probably someone there with a hearing impairment partying, singing and dancing louder, harder and prouder than you.  And there will always be someone with a disability missing out on the same experience you're getting, if they can be there at all.
Most of all - support music!  Pay for it when you download, spread the word with videos of good concerts, drag a friend or three.  Oh, and never ever make a jibe at Clay Aiken, or you'll end up with me and a bunch of angry Claymates after you!

I'll admit it took me a bit to find a good song to fit this blog, but this about does it.  Archie was runner-up on Season 7 of American Idol and this is one of the songs that he did on his debut albums that just makes me want to crash a concert, and dance.

Saturday 20 July 2013

[1] Skyscraper.

-- Closer to the clouds up here --

Living with the number one genetic killer of children under two is an interesting, yet thrilling ride that can take a sudden dip during any turn.  People are often petrified at this prospect, and when they hear that Spinal Muscular Atrophy took my sister when she was 14 they tend to run 10 country miles.

The fact is that using a non-invasive ventilator, which is more commonly known as a life support machine, a feeding tube, a cough assist that is akin to a vacuum cleaner and any number of medications when my lungs to succumb to another infection does not change one simple fact:

Life is a ride we all take, in sickness and health, in disability and ability.  It goes one way - closer to heaven with every second - every breath.  All muscle disease does is make you aware of that with every movement.

I'm on top of that proverbial skyscraper - acutely aware that whether you are 101 years, months, weeks or even seconds old, life has to begin and end.  It is merely taking the chance to live life while you have it that makes the difference between a self-imposed destruction, or happiness.

Here, I will be telling you about my life as a music lover born with no ears, the latest saga on the reality music TV programme I'm watching, or how life is from inside a hospital.  I will also be blogging about disability, and how we all need to find the ability in ourselves - disabled or not.

Welcome to this little virtual piece of Hollywood.  It won't always be glamorous, and it certainly will get crazy.  But this is the story of how knowing that your rollercoster car called life might not go as far, gets you more happy time than you could imagine.



I will end most blogs with a video.  This time, it's the turn of Angie Miller with her stunning version of Demi Lovato's Skyscraper.