BLOG: Jake’s Life with the Mariners

The following blog was written by Jake Banks – one of the Central Coast Mariners biggest fans. We thank Jake for taking the time to express his feelings about the Club, and can’t wait to see the smile on his face when the team walks onto the field for Hyundai A-League 2014/15 round 1 on Saturday 11 October against Newcastle Jets. We’re in your corner, Jake!

This is my story about how the passion of my interest in football has influenced me.

I have lived all my life at the Central Coast and prior to the year 2005 the Central Coast had no sporting teams to represent the region. It was in this year that finally the beginnings of a soccer team was created and this team was named the Central Coast Mariners. 

I did not know anything really about soccer before this team was created and had very little interest in the sport. However, all of this changed when in 2005 whilst at my primary school the team came to visit us all for the day. In honour of the team coming, our canteen put on a special menu for the day with foods such as ‘McKinna's Macaroni’ and other themed foods. However, it was not until the players came and spoke to me personally that a passion in me was stirred. 

Skip forward another six years and in 2011 whilst at High School on 'Plant a Tree Day' the Mayor of Gosford, Lawrie McKinna came to our school and planted a tree. It was here that I spoke with Lawrie and mentioned that it would be great to work alongside the Central Coast Mariners in any capacity.

I have cerebral palsy and am restricted to life in a wheelchair. So, how does a wheelchair bound person and a bunch of sports people become so important to one another’s lives? On that day at the school I was not treated any differently to my peers and I had the chance to lead the players around my school, show them our facilities and to feel "normal".

Due to my disability I am not in the position to work in a mainstream environment. I attend a day program called Community Participation with Coastlink and it is through the assistance of the carers who look after me that I have the opportunity to watch, and over time participate, in the Mariners’ training. This program has allowed me a unique opportunity to get to know the players and coaching staff on a personal level, as I have been there religiously for training sessions. When I first attended these sessions it was just great for me to be lost in my world of sport. Watching people who I admired train and then perform within a competitive league a few days later, knowing that I had watched these strategies of play being performed, now play out in an A Grade game. 

Strangely enough by being there I felt as though I was part of the Mariners team and that my disability was irrelevant and not in the forefront of my mind. As time moved on and I was still attending the training sessions the players and coaches would come over and speak with me and ask me what I thought. I have to say that this made me feel so lucky and fantastic...that there wasn't a barrier of metal from a chair between the conversation, that I am a person to them. It was here that my dream of working with the Mariners on a volunteer level started to come to life. 

So here is the double edge sword of my life...if I did not have a disability, the experiences that I am about to share with you would never have come true and I really feel like I am one of the luckiest people in the world with what I have experienced through the football community. I know that the chances I have had and the people I have met would never have happened if I wasn't in a chair. However, I would still prefer to walk and have a normal life like any other I feel sorry for myself? Really no, but I do get frustrated which is different and to stop my frustrations I do throw myself passionately into supporting the Mariners. I have been accepted by the Mariners community as Jake the person and not Jake the disabled and that is a support to me that is hard to describe.

Okay so now I get some bragging rights...but hey you can run!

However, before I brag the experience of acceptance and being part of a community from the Mariners is amazing. I know that 'normal' people watch these players and don't have the personal experiences that I have such as sitting and chatting or laughing with them at the completion of training sessions. So without sounding big headed, I want to say clearly that I am very appreciative the opportunities that I have had...that said, here goes for all you sports mad people that get it!

I have had the chance to train the Mariners as their Coach for a day. Working with these athletes and suggesting gameplay tactics that they then used.

I have worked behind the scenes with the Mariners staff and helped them to develop the team’s disability profile. The Mariners team pushed me 12km in the Bay to Bay on Sunday 15 June 2014.

I have been invited onto the field before the game, tossing the coin to start the game and being able to attend the dressing room after session.

I have been invited to Mariners Medal presentation functions, attended fan forums and watched away games with key people of the Mariners community.

Through the Starlight Foundation I met the players of Manchester United, the Socceroos and got to hang out with the captain Mile Jedinak.

I have been interviewed by NBN for my involvement with the Mariners as one of their key supporters.

But most importantly having players taking the time to speak with me outside of the training/sporting environment and accept me for not only a fan, but as a person and to see how my life is lived outside of the training stadium.

So pretty good bragging rights I think. 

So what is it like to be a person who can think like any other independent person, and then a person stuck in a wheelchair and to live with a disability? 
It’s frustrating and hard, to tell the truth. 

I struggle with two major issues with my disability. One is obviously physicality. When you see me I am in a wheelchair. I can not support myself and require a carer in all aspects of physicality. My other major struggle is communication. Of the two, communication is probably the hardest struggle to live with.

Let me try and describe in the best possible way what it is and maybe it will give you an insight into how people with a disability feel.  

My mind acts like yours does, thoughts and feelings flow through my brain and I desire the interaction with other people in conversation, just like you do. However, the flow of speech for me is my struggle. I can form a sentence to have with someone, I construct the flow mentally and then feel the emotion of it being two way (i.e. with another person). My problem starts when this emotion of the interaction with another person flows from my mind actually blocks off the words that are in the sentence that I am trying to say. 

Some times I get upset as I have got so many things on my mind and at times it goes into overload as I want to talk to people and I have to work through this process each time. I often lose the flow of my conversation and then I have to try and think of what I wanted to say. I have to take control of the block, process the emotion that I am feeling and try to retain the words and sentence that I was in. The challenge is the words might come back straight away so I can keep talking to you, or in a an hour or more. The other part of the block is that when the words stop my body goes into a physically reaction; I either stutter or my body spasms and the person I am speaking with has to wait for me to grab a hold of my physical challenges and then come back to the flow of the conversation.  

So if you have roughly 50 conversations per day, the whole processing experience of emotions, word memory and physical control can be taxing as I need to do it for most conversations, and this can be exhausting. It is also frustrating for the person who I am speaking to, as they do need to have time and patience to speak with me. Time to allow me to process my communication block and patience as my physical stutter can make a one minute conversation become three minutes. I am aware that most people don't have time to spend with a person with a disability in the respect of letting the person with a disability work through their challenges. People naturally expect conversations to flow and to be at the speed which they are thinking whereas for me it’s a stop and start process. I want to be able to concentrate on the people I am having the conversation with or just focus on other things and instead I am forced to have to work through a communication process each time and this knocks my self-confidence around, as you would expect. But it’s not just about the lack of confidence with my speech that effects me in wanting to live a 'normal' life, it’s the day to day challenges.

So I am 20 and want to move out of home like every other young adult and be independent, catch up with friends, etcetera. I think to myself it’s easy but it’s not, as can a disabled man live out of home without a 24 hour support network (or Mum for the short version)? It’s an overwhelming goal to aim for as the steps to get there are hard and tedious, but the goal is worth it.

Think about the steps you do to move I move out into an apartment or a house and share with others? I need to think about ramps, a lift (if they will fit my wheelchair) and accessibility to long neck hose showers (and that's just to start with). Plus can people I don't know live around a person in a wheelchair who needs support and carers coming in and out of house for assistance with physically changing, etcetera?

The basic questions of how much is rent, groceries and bills and what do I allocate out of my weekly pay packet? For me I receive a pension and this pension includes my program fees, carers’ support, travel expenses (for disability taxi service), entertainment, etcetera, so can I afford rent groceries, etcetera? At this point in life my Mum manages my money and I need to learn the baby steps of Internet banking and overcoming my fear of speaking to someone on the phone when you have a stammer if something goes wrong. So it’s a huge process.

But it’s a process I am commencing and it starts with the confidence to attend the Mariners games this year on my own without a carer. To be able to ring up and book the taxi company, get off and attend this game by my own, knowing that I know people and they wont be scared to speak with a person in a wheelchair.  

Each day I deal with public perception and people either pity you or look at you with sympathy in their eyes. Some people don't know how to react and either cast their eyes down and walk past you or condescend you with the way they speak to you. They assume you have a delay in how you think, and therefore speak to you as though you are a child. To confront these perceptions on my own is totally out of my comfort zone, but I do believe is the first step to becoming an independent adult.

That is why my association with the Mariners, and the people involved in the club accepting me for the person who I am means so much to me personally and emotionally. It assists me with my first steps to gaining independence and allows me to be a person who I aim to be. I couldn't achieve any of this without help and support from my family and friends, support workers and the Mariners staff. 

Thank you for taking the time to read this and I hope that it has given you a insight into a person’s life with a disability and to understand the rollercoaster ride that we take each day. It makes me feel like I am not alone in my journey to get to my goal.