That Time When I Experienced Disability Discrimination

Hey guys,


So, as some of you Twitter and Facebook followers know, me and H went to the Kings of Leon concert at Sheffield Arena on the 18th June and things didn't go quite to plan. In a nutshell, we arrived at the arena to find that our pre-booked disabled seats had been given to a non-disabled couple who were claiming a 'bad back' after booking sto. After much explaining of my condition and state of health we were then forced to move allll the way around to the other side of the arena despite several further explanations that this would be potentially dangerous for me as my breathing wasn't great.


Still, we were forced to move.


I wrote this letter to the arena manager to complain:

Dear Mr O’ Shea,

I am regrettably writing to you to make a serious complaint about the way in which myself, my carer and partner, H were treated during our attendance at the Motorpoint Arena on Tuesday 18^th June 2014 for the Kings of Leon concert. On arrival at the concert we were greeted by friendly and helpful car park staff which lessened the extortionate blow of being charged £20 for a disabled parking space.   

On entry to the arena, friendly and helpful door staff showed us to the disabled access lift which led us to the level on which we had pre booked our disabled seats many months ago. On arrival at seating bay 116 which hosted our seats we were dismayed to find that our seats had been willingly given to a non-disabled couple. Myself and my partner explained to the Showsec steward that we had booked our tickets months ago and that the couple were wrongly seated in our seats. He apologised and called for a supervisor who turned up and we explained to them both about my disability, Cystic Fibrosis. If you have no knowledge of this disability then please allow me to explain. I was born with Cystic Fibrosis and it is an incredibly serious lifelong terminal lung disease which affects all of my major organs. It constantly fluctuates and I spend a huge amount of time every single day undertaking an invasive and exhaustive treatment regime which also results in frequent long hospital admissions. There is no cure for it and it will not get better. I am now clinically at the end stage of the disease meaning that I am not expected to live longer than the next 2-5 years without requiring a lifesaving double lung transplant that I am currently being annually assessed for. In short, I am dying.              

As a result of being at the end stage of Cystic Fibrosis I now have to wear a heavy portable oxygen backpack wherever I go, 24 hours a day as my lungs are seriously damaged and currently operating at 30% capacity which is equivalent to the air within 4 empty cans of fizzy drink. Once we had explained my health situation to the Showsec supervisor he left to arrange alternative seating and then returned and asked myself and my partner to move to seats on the opposite side of the arena in seating bay 107, directly opposite where our pre booked seats were. We explained again that I would find walking to the other side of the arena very difficult indeed as I had just walked into the arena from the disabled parking spaces which in itself for somebody in my condition is quite a considerable task and dangerous for me. We were still asked to move. The couple who were wrongly seated in our seats claimed that they had booked standard tickets and then as the male had ‘injured his back’ since booking they had been given our seats to sit in. The only solution that the Showsec supervisor offered before moving us was that were we to go and discuss the matter with the customer information staff who I believe were named Carol and Sam.                                                                                                                                        

This is completely unacceptable for a number of reasons. As we had spent the best part of 15 minutes explaining our situation to the Showsec stewards and supervisors, and then were forced to walk around to the other side of the arena which made me very breathless and requiring my medical treatment to be administered by H such as inhalers until my breathing calmed down some 15-20 minutes into the Kings of Leon’s set it incredibly soured and spoiled our first visit to the Motorpoint Arena. The whole thing had gone from being an event that I had paid great expense for and were very much looking forward to for months, to one of stress, disappointment and emotional upset - none of which were our fault. Once Helen had made sure that I was ok and that my breathing had returned to normal she had to leave me to deal with the staff at the customer information point that were initially cocky and frosty in demeanour towards her. Once she rightly explained the whole situation to them they were incredibly apologetic and admitted that the incident was a huge mistake and that it should never have happened in the first place, advising us to write an email which I will do alongside this letter. However, to add insult to the already soured evening, once we had been seated in our replacement seats which as I stated were directly opposite our original ones, I witnessed the male from the couple get up, walk around freely and go to the toilet unaided with my own eyes which made me doubt his ‘bad back’ story.                                                                   

It seems to me that your staff are not correctly trained in how to deal with disabled people, there seems to be a mind-set prevalent that ‘if you’re not in a wheelchair then you’re not disabled’ which is wrong and highly discriminatory in nature. This especially seems to be the case when you consider that we explained my very serious health situation several times over to all parties and not once were we neither offered seats nor was action taken on our behalf which would and should have been to move the couple who were wrongly seated out of our legitimately booked seats. The evening was very distressing for me and my partner and I very much doubt that we will be returning to the Motorpoint Arena in future as it was an experience that was in no way justified when considering my serious health condition and the fact that tickets and parking charges amounted to £141. I expect a better level of service for that amount of money as it is a lot indeed for someone to afford who is too ill to work and reliant on my disability benefits to survive. I also expect to be treated as equally as non-disabled customers are which as you can see me and my partner clearly weren’t. We have been to many different venues and gigs as it is one of the few things that we can do together which help us get through the toughest of times living with a terminal illness and we have visited Leeds Arena, o2 Apollo in Manchester, Bingley Festival and the Leeds o2. They have all been absolutely fantastic at supporting the needs of disabled people, provide friendly and helpful staff and the facilities are second to none. For instance, Bingley Festival offers a dedicated team of ‘Event Buddies’ who will collect drinks from the bar for you to avoid long queues and the Leeds o2 have their disabled seating area upstairs so it is nearer lift access and a quieter bar area. All the aforementioned establishments also offer free tickets for carers to be able to attend gigs and concerts with their disabled friend, family member or loved one too. Those may be areas of improvement that you may wish to review in future along with the extortionate £20 charge for a disabled parking space in the name of equality and fairer access to facilities for the disabled which you are legally required to do under the Disability Discrimination Act 2010. It is a shame that Sheffield’s Motorpoint Arena has not lived up to these high standards too.

I would like an explanation in writing of the above incident.

Regards,

Andrew Ward.


I emailed a copy of this to the customer services, and received this replay some 48 hours later:

Dear Mr Ward

 

Thank you for your email.  I was disappointed to read that you had cause for complaint.

 

We do not charge £20 for a disabled space.  All of our car parking spaces are £5.50 when bought in advance and £6 if bought on the day of the event.

 

I passed your email on to our Head of Security who has investigated and I have since had a report from the Showsec supervisor in the area.  It is true that we had relocated 2 people to the seating bay in which you were allocated 2 spaces.  This was a mistake by a member of our box office staff and may I take this opportunity to apologise on their behalf.  However, the Security Supervisor offered to move these 2 people to another bay, but says that you said you would go to the other bay instead.

 

We have to take people at face value.  If they say they have injured their back and ask if we can help them, then if it is possible we will help them.  On this occasion they should have been located in a different seating bay, but there were spaces available for anyone who had been injured since they purchased their seats.

 

It is incorrect to say that our staff are not trained to deal with the disabled.  They are trained in all aspects of customer service, including dealing with disabilities of all kinds, and not just wheelchair users.

 

Regarding seats for carers, prices for our shows are set by the show’s promoter, and the vast majority do not give free seats for carers.

 

I am sorry that you were disappointed with your evening at the arena.

 

Yours sincerely

 

Joe Waldron

As you can all see, their response was dismissive of my genuine complaint and eloquent explanation, and it comes across a tad arrogant and completely insincere. It's obvious that we have a 'you said/they said' situation now between myself and the arena staff and I expect that this is where they think the matter will end. They're wrong.

My grievance is as simple as this, pre-booked disabled tickets should not be given away to anybody else, no matter what the circumstances, and especially not when over £100 had been spent on them. It's disgusting enough that disabled people are charged more than the able bodied in the first place for access to cultural events such as this so why should we stand for that access to be denied because somebody claims that they have a 'bad back'.

I think my next course of action will be to take the matter to the higher ups at Live Nation - the promoters and if I get a similar response to this then I will have to contact the papers because, remember fellow disableds, nobody gives a shit about you if you're not wheelchair bound. I mean, that's the gist of what this disagreement is, am I right?

Let me know your thoughts, or possible advice for solutions below.

Cheers,

Andy.

Guest Blog on Josie's Journal

Hey all, so I was asked to write a guest blog by fellow CFer and all round lovely person Josie as part of CF Awareness Month in May. In the UK we normally have CF Week every year, but this year The CF Trust has chosen to promote a year long 'No Party' campaign as they turn 50 and don't really want to celebrate being that CF is still wiping us all out. I know, it's a different kind of campaign but I suppose it is their choice on how to focus their efforts.






ANYWAYS, as a result of this many UK CFers are hijacking the yanks CF Month that runs all throughout May in the good ol' US of A to do their bit and fight the good fight and so on.




So yeah, Josie asked if I'd write something for her so here's the link pretty much. Let me know what you think and check her blog out too: Josie's Journal
















Thanks,


Andy.

No Make Up, No Awareness, No Hope For The Human Race

I posted this today after I'd woken up from very little sleep with a banging head 11 days into my IVs and was then confronted by hordes of ego boosting selfies on Facebook . None of them had any info on Cancer, or how to donate, or how to do anything apart from nominate a mate to show solidarity. I think something's been lost in the message and as my old friend Marshall McLuhan said 'The medium is the message'. Oh dear.

 

Anyways, it pissed me off so I wrote this and set it as a status:

 

 

I'm going to have another *long* rant about this whole no make up crusade by narcissistic bell warriors who insist on raising awareness of awareness by posting selfies without any kind of detailed medical information regarding cancer or links to donate money, you know, the two actual things that will make a difference to fighting The Big C along with giving up their time and volunteering for a can...cer charity too (I guess that's three things then). You want to know why it rags me off that social media trends like this pollute my timeline? It's because most people doing it do fuckall else the rest of the year but as soon as some trend hits Facebook and Twitter they're Marie Curie and Florence Nightingale all rolled up into one because 'lol' it gets them attention from their equally derpy friends too and they can give themselves an ego boosting pat on the back, thinking they're actually doing something without actually DOING something. You know, just like that time when they stopped Joseph Kony, stopped child abuse by changing their profile pictures and such like - all hail the power of the internet and Facebook likes! Charities have spoken out about how it is damaging to proactively helping and there's even a name for it now: slacktivism. I'll be honest too, most of you will willingly join an internet crusade but when it comes to anything to do with CF you give zero fucks. I constantly post links to information, fundraising opportunities and stories about how the CF Trust receives very little at all and you all stay silent. Your silence damns you. You're all quite happy for me to entertain you and to laugh at my offensive outlook on life but when I post anything serious about CF - there's nothing, no response, no crusading, zilch. Now, I know that I'm a massively opinionated knobhead and not the easiest person to understand in most people's eyes but of course, what will happen is you'll wait until I'm critical and desperately in need of new lungs to live, or worst case scenario you'll wait until I die and THEN you'll all become charitable crusaders on my behalf, tribute nights, fundraising, organ donation sign ups, swathes of comments on my Facebook wall about how much I meant to you and how much you miss me - all in honour of your good friend Andy. I mean after all, you're all constantly entertained by my give no fucks attitude to life and straight talking demeanour you lap that shit up but, oh look, when I discuss the very real possibility of my death being that now I'm at end stage you're all passive and apathetic to helping the cause which has kept me alive this long which does absolutely fantastic work with very little trendy media campaigns, celebrity support and Facebook/Twitter bandwagons. It just doesn't sit well with me, case in point that it's usually only people with CF or their families who donate on the links that I do share and that's just wrong in my eyes. You all know mine and my friends situation and you should all be doing more if you genuinely care about me. Any of you could have a child with CF at any time, or you could be a carrier of the CF gene so CF could very likely affect any of you or someone you love at any time but of course THEN you'll care won't you? As I said this is aimed at those of you who do NOTHING most of the time, my own father and aunt are both currently undergoing treatment for cancer so before anyone accuses me of being insensitive to the disease I'd like to circumvent that with a big fat fuck you. I just haven't felt the need to bleat on about it via Facebook ok? If you're offended by the truths in this status then, well, I'm not bothered to be quite honest as everything I've said IS true and I've been wanting to say this for some time indeed. To those of you who have survived cancer or who do actually fundraise at other times and not just when the internet deems it cool to do so then well done. Peace out.

Redux

Well, it's been an age since I posted anything on here. 16 months in fact. November 2012 was my last post and in all honesty there's no real reason as to why I haven't kept up with blogging. I guess I just got bored of it.

I see a lot of blogs, bloggers and blogging in general via Twitter and most of it just leaves me feeling a bit 'meh' really. I find it really hard to be stimulated by the blogs which are just a poor excuse for the writer not having kept a diary when they were a teenager. The same goes for fashion blogs = yawn, celebrity blogs = yawn and so on.

Some of this boredom undoubtedly stems from the fact that a lot of the time I feel disconnected from society and the culture that the masses promote via the collective consciousness. I just don't find the stereotypical things that interesting which most people do and which most people fill their lives with on a daily basis.

New shoes? Nobody gives a fuck about the essay you wrote about them. Went out and got laid? Nobody gives a fuck about 10 paragraphs about that either. Writing about your favourite celebrities and how much you bum them? Go ahead, end yourself and save us all the inanity of reading your bile praising the talentless turds you worship because you have no ability to construct a meaningful identity of your own.

Don't get me wrong, there are some actual decent blogs out there in some dusty areas of the t'internet, and some great writers too. The next time I come across some I'll drop their links off for anyone interested in reading something different for once.

This isn't me proclaiming that my blog is some revolutionary new discourse that you all must read and praise either. Truth be told, I'm not bothered if anyone reads what I write, I'm not doing it for any other reason other than when I can be arsed, sometimes I like to write.

I do think I should at least 'try' to make more of an effort though. As I've said before if my blog can help one young person who is growing up with Cystic Fibrosis to realise that you can live a good and fulfilling life with the condition then I suppose that's a good enough reason as any to write.

I think I'll also focus on my personal interests a lot more too and explore some of the things that I like to do and fill my time with as I'm not just an opinionated culture bashing tosser all of the time for the most part.

So beware, I'm back bitches!

A.

Fear Costs Life

This latest blog isn't going to be particularly in-depth about an aspect of living life with CF. It's more a statement about life and what life is really about. Deep huh? It's going to be one of those blogs that will probably come as a shock to people who read it (Andy has actual feelings - shock, horror!).

About three years ago, I was reeling from a break up with someone I was on and off with for about two years. At one point I decided to dip my toe in the realm of online dating which was overall a nightmare as in my opinion, most people who online date are completely emotionally damaged for the most part and batshit crazy.

Don't get me wrong, there are diamonds out there on the t'interwebs, but overall it's just a huge NO for me.

And that's what this blog is about: the person who walked into my life that is a diamond.

I didn't realise it at first, I took her and her feelings for granted and in all honesty didn't believe her intentions were true. You see, for all my confidence when it comes to life and women in general, pretty much every woman who has said all the nice things that we all want to hear has inevitably fallen short of proving them with their actions at some point so I've been hesitant to believe them.

That's not to say all my exes have been bad, just most of them have.

Also, when you throw into the mix societal pressures regarding gender roles in relationships, 'men must have a job' and 'you must be able to have kids' and so on (a lot of women are incredibly shallow and fickle these days), being an adult male with CF is quite troublesome at times and as a result I was simply too scared to believe my diamond was genuine. I mean why would any woman be seriously interested in a man who can't work anymore, can't naturally have children and most of all who would want to love/risk loving a man where there is a good chance that they will die at some point in their relationship/life together?

That is the absolute truth of the matter but what a fool I was for thinking that bullshit eh?

I believe fear is mankind's worst trait. Quite simply put it holds us back, it denies us so much in life, so many good things that many more people would experience if they just had the balls to acknowledge it, process it, and laugh in its face.

I know I like to sing and dance about being awesome all of the time but the brutal truth is that at times, I am just as guilty of being as weak and fearful as many people are these days.

To her absolute credit, my diamond stayed in my life and I now absolutely couldn't imagine it without her. She's never faltered once, doesn't care that I have Cystic Fibrosis or that I am unable to work anymore as a result and has been steadfast in showing me how much she loves me over and over again. She's been there for me when I've been seriously ill, happy, sad, grumpy the whole nine yards and we've also shared some really great times together too. In short, she's the only person who has ever truly made me feel like being 'me' is acceptable and when we spend time together it is as though the rest of the world and its problems just don't exist. She's been completely infallible.

That's a very special thing indeed. It's that thing which we read about and see in films and cultural narratives/discourses. And its that thing which many people search for their entire life but unfortunately never attain or find.

I've recently decided to face how I truly feel about her, and she knows this, because quite frankly and as much of a cliche it is life is just too bloody short and I'm bored of pretending and lying to myself, and most of all lying to her.

You don't take for granted what we have and regardless of the fact that if this particular part of my life has an happy ending or not as that is up in the air at the moment, then I know I won't ever take her or her feelings for granted ever again.

In short, what I want to say is don't be scared to love people, or BE loved by people. It's incredibly hard at times I agree as so many are not true to their words these days which I have experienced over and over again, so if you're lucky enough to find a diamond who is then grab it and cherish it. Your life will be enriched infinitely.

If my diamond is reading this then I just want to say thank you, for being you.

Oh, and to everybody else I'm not having an emotional breakdown or anything or turning into an emo.

Real talk.

Peace out.

Naso - Gastric Feeding. What It Do?

Greetings blog readers, that's if there are any regular blog readers that is. I've been off the radar for a while making positive changes to my life which have led to a happier me, so all good there then.

I thought I'd best just pull my finger out and get blogging regularly again then. Every little helps with CF awareness and all that. So, what to blog about pray tell?

As it is coming upto to the festive period, I've started noticing all the token 'must start dieting for the Xmas' type tweets and Facebook statuses from people.

That's right, human beings are annually gearing up for their two week greed and gluttony fest as is the case every year, starving themselves or indulging in some revelationary 'new' diet fad which consists of fucking their bodies up by ingesting only juice/soup/grass or whatever the multi-billion dieting industry tells them is the 'absolute guaranteed' way to lose weight this year.

Hello manipulation central. And all for what?

Anyways, before I engage full rant mode about normals and weight I thought i'd write about weight gain and the problems people with Cystic Fibrosis face in trying to keep theirs up, so here we go.

As some of you may, or may not know CF doesn't just affect the lungs it also affects most primary organs in the body in some way including the pancreas. The same thick, sticky secretions which clog and infect our lungs also inhibit our ability to digest food properly. This leads to malnutrition in many people with CF and a constant, neverending and quite tiresome at times battle to gain and maintain weight.

Here's a picture of all the stuff CF *can* do to someone:

In order to assist our pancreas in breaking down food properly many of us take pancreatic enzymes with all food and drink consumed. Here's a pic of the ones I take called Creon 10,000:

These are little capsules which I take whilst eating all meals and snacks that help break the food down and assist the pancreas in absorbing nutrients and vitamins and so on. My dose currently stands at 6 with meals and 4 with snacks although I can change this depending on size of meals and fatty content of what I eat.

What happens should I forget to take them or if I run out? Intense stomach cramps that floor you and epic runs requisite with ring sting on the old brown eye so it's usually a good idea to make sure you always carry some in your bag.

Now, I've always managed to keep a good weight on me over the years. When I'm well it is usually between 70-73kg and I'm not a fussy eater so it has never really been an issue with me, I've been one of the lucky ones for a long time.

However, last year when I split with The Girl and all of the associated emotional trauma that come swith such things, my weight plummeted to its lowest ever of around 66kg in just over two weeks from what had been a respectable 72 kg (relationships - bad for your health or what?!).

At the time I was in my critical final semester of my undergraduate degree and desperate to stay well so I could successfully complete that with gusto. After discussion with my hospital dietician about the potential risks of any added infection which would cause my weight to plummet further (when you're ill your body uses calories to fight infection hence why good weight is essential for people with CF) and leave me seriously ill, a joint decision was made for me to start Naso-Gastric feeding regularly in the hope that it would help me regain lost weight and act as a buffer in the last few stress filled months of university.

I was gutted, I won't lie. Despite being mature about it and knowing treatment increases the older you get due to your CF getting worser I was still pretty upset by this as, well, feeding with a tube down your nose just isn't sexy so the vanity worries/issues of how it would look to any potential girlfriends raised their heads. Needless to say I soon put those to bed and was admitted into hospital for the weekend to learn how to undertake the treatment at home. I mean, if anyone can make a plastic tube going down your throat and then stuck to the side of your face sexy, I can. Right?

SO. All went well in hospital as I was only admitted for the weekend and I swiftly returned home to continue to feed overnight under my own supervision.

Here's a run down of what happens and the equipment I use. Firstly we have from left to right: a standard infant feeding tube, some scissors, the all important tape, lube (handy for the ladies too, if needed), a PH strip and a 20ml syringe:

I usually start by unwrapping the feeding tube, which is numbered and adding a little tape at the mark of number 65. Why? Because the tube is lined up from your belly button to your nose when you first start feeding to provide a rough estimate of how much length is needed to get down into your belly, too little and your feed could run into your throat, and too much could result in it coiling up in your windpipe which wouldn't be cool at all.

I then dip the end in some lube, sliding it in gently, but deeply as the moist, sticky wetness engulfs my..... oh shit, sorry I was going all '50 Shades' then. My apologies. So yeah, I lube up the tip (it still sounds sexy - fuck!) and slowly start inserting it down my right nostril. Now this is the bit that usually makes people gip, my ex couldn't bare to watch me do this but it really isn't that bad and doesn't feel bad either. It is akin to slowly swallowing a really long piece of spaghetti, the only tricky bit is when you get to your trachea as if you get it wrong you inevitably gag and start coughing loads which is what happened to me on my first attempt.

I should just now make a personal apology to all the girls who I have made gag in the past whilst performing sausage swallowing on me as I now know what that feels like in some sense. You have my heartfelt and sincerest apologies ladies.

Anyways, once you get to the marker on your tube and if all feels well then it is usually a good bet that you have successfully completed accessing your stomach so you strap your tubing to the side of your face with some tape. In order to further underline things are right you must then draw some bile from your tube into the syringe, not much, just a ml or so and then test it on the PH strip. This ensures it is in the right area as you really don't want to have mistakenly threaded it into one of your lungs.

That wouldn't be cool. AT ALL.

Next step is making your feeding bag up. I'm prescribed 4 tubs of Ensure TwoCal which is a weight gain supplement rich in calories and nutrients. Each tub contains 400Kcal meaning I'm ingesting 1600Kcal whilst I'm sleeping as my feeding pump is set to a 100mls an hour rate. Some people with CF choose to have their feeds running at higher rates to get it over and done with quickly but not me as rushing it can lead to exacerbating bowel problems which really isn't cool so I'm a good boy and stick to the guidelines set by my dietician.

Here's the tubs of Ensure TwoCal:

Here's the feeding bag attached to the pump:

And here's me all tubed up (with oxygen too). Who could resist such sexy bedtime appendage I ask you?

So yeah that's the basics of it all. After a few months of overnight feeding I successfully managed to regain all of the weight I lost and it was decided to continue feeding as I could feel the benefits. I had more energy, my weight was up and my appetite was better throughout the day too on account of the feed stretching your stomach which is all great stuff. I've even recorded my best weight ever at clinic since starting the treatment so if anyone is thinking of starting it, or it has been suggested by their CF team then I'd really advise them to go for it.

It does have its drawbacks though, sometimes and especially if you have overnight oxygen too you can wake up in the night with your tubes wrapped round your neck and such, and overnight feeding can exacerbate/help the onset of Cystic Fibrosis related Diabetes, however regular checks on your blood sugars at outpatients and as an in-patient will help keep an eye on this and shouldn't put anyone off. And as mentioned, it doesn't look the sexist but you know what fuck it, who cares?

That's about it then, if anyone has any questions then feel free to comment. I'll write another blog following this one up about why normals moaning about their weight pisses me off when I have some more free time.

Until next time, stay sexy you beautiful bastards.

What I Do.

First off, I'm actually gobsmacked at how long it has been since I last blogged, and there I was thinking it would be easy to write regularly about the myriad thoughts and opinions whirling around inside my brain.

Note to self: must do better in future!

That is, of course, assuming anyone is reading these posts and gives a shit about my rantings and ravings.

So. Here I am just about to start the 4th week of my Master's degree and all is going swimmingly. I have a raging education and knowledge boner about the topics we're learning, a small and diverse range of fellow coursemates who all seem lovely, great tutors and all is well. It's exciting to be back in education again and I can honestly say it is one of the things which keeps me going during the tough times of my illness.

Learning, knowledge and education really should be at the forefront of more people's lives as it truly isn't appreciated these days.

One of the things which myself and my coursemates have been discussing amongst ourselves is how we explain to people just exactly what it is we do. I mean, when asked by numerous people, ''what are you studying?'' The answer of, ''Cultural and critical theory mate.'' usually falls on deaf ears and tumbleweeds of silence ensue from a whole range of people. I kind of like that though, an air of mystery and all that, like a badass intellectual James Bond only without the dry Martini, shaken, not stirred. I'm more of a Jack Daniel's and Coke guy myself.

So what is cultural and critical theory? I guess the best way I try to explain what it is that I do is that I deconstruct ways of viewing the world, society and culture around us, and then I reconstruct them into new ones.

What is the point of that I hear you ask? Well, for starters you can tell a whole bunch of things about a society by the culture they produce and invest in. Like, for example the fact that everyone who seriously invests in vapid shit like The X-Factor and thinks it is a serious contest to find a genuine musician is being manipulated by the mass media and exploited by people like Simon Cowell.

I must state that is common sense knowledge to those of you with a brain so you won't be surprised in reading that example. Kudos if you are one of those people.

However, what I like about Cowell, who, to his credit may be a smug arrogant cunt but at least he's still honest about the fact he's making his gazillions from exploiting the stupidity exhibited by the vast amount of sheeple out there. I do respect that level of arrogance somewhat.

Kudos to you 'bro. I totally would too. There's money to be made in them there lack of brains after all.

So yeah it's stuff like that, it covers a whole range of sociology, psychology, literary theory, art, sculpture, architecture, politics and pretty much all aspects of society. It's knowing a lot about the systems and mechanisms which make the world turn that most people know zero about and don't realise they are being controlled and exploited by.

It's kind of being on the outside of the knuckle dragging masses looking in, which when I thought about, it draws a similar parallel with Uatu the Watcher, a character from Marvel Comics.

Who? This big, bald-headed fuck right here:

 

This is Uatu the Watcher on the cover of Fantastic Four #48 (March, 1966 Marvel Comics)

 

He's a member of the extraterrestrial race known as the Watchers. These big, bald, beautiful bastards stationed themselves across the universe to observe the activities of other species. Uatu is the Watcher assigned to observe Earth and its solar system. Kind of like the ultimate nosey bastard then.

 

I bet you're all thinking what a fucking comic book geek I am right now, right? Yeah, and what?!

 

The emphasis I'd like to place on the similarity of cultural and critical theorists to these big, bald-headed fucks is that of observing. Cultural and critical theorists observe and constantly analyse the world around us.

 

Sometimes that's really hard because there's a lot of fucking stupid people and situations in the world as I'm sure you all know so it can sometimes feel like a curse and burden that we see and analyse things on a much deeper level than most can, or ever do. It's also hard because our opinions and viewpoints can often be brutal and controversial, fortune favours the bold though, right?

 

It's especially hard to do for me at times, because being born with Cystic Fibrosis gives me an outlook on the world and society which has made studying cultural and critical theory a natural and perfect fit for me. The hard part is that I see the world differently from the norm, but then my view takes on a whole differnt slant and weight when you incorporate my existence as someone who is dying from an incurable illness.

 

I kind of see myself as a specialist within a specialist field, if you will.

 

Myself, and fellow CFers literally exist within a completely seperate reality from everyone else, and nobody can ever, or will ever understand that, except those others also born into this existence. It's just how it is and always will be. For example, you can be the most qualified medical specialist in the world at dealing with CF with a list of prestigious qualifications as long as your arm, but you are still an outsider and somewhat of a novice looking in on the world of someone born with it. I know my doctors would shit bricks if I ever said that to them too haha

 

And that's where I want to focus my work. I want to contribute to society's wider understanding of both disabled people in general, but especially so as to the understanding of the lives and experiences of those of us living, and most importantly of all, surviving and thriving with CF.

 

I'll leave you with a quote I like by Jack Keroauc, which I think resonates on this particular subject of just what it is that I do:

 

"Great things are not accomplished by those who yield to trends and fads and popular opinion."

 

Indeed. Until next time, peace out bitches.