Fighting Chance blog 20

Revenge is best served cold

I read an article on Engadine mum Julie Webster whose Down Syndrome daughter Josie was snubbed from her high school formal because of her disability.

Josie didn’t receive an invitation to her school formal but was more disheartened when she saw pictures from it posted up on Facebook and felt left out. According to Julie, the issue of discrimination for her daughter wasn’t as prevalent as much as it now has become.

Understandably upset, Julie Webster reported it to the principal claiming that the teachers set the whole thing up which at the time she believed to be true.

After much investigation from the whole school staffing body and from the teachers themselves (even the ones that were being blamed for and/or accused of orchestrating the whole thing) the final result of the investigation turned out to be that the P&C (parents and citizens) group were the masterminds behind this incident, which then led Julie Webster to take revenge by chronicling all her daughter’s achievements in a YouTube video.

On a more positive note, Fighting Chance intern Lia Sintras who has the spastic quadriplegia type of Cerebral Palsy (CP), which entails her walking with a walking frame, goes to Burwood Girls High School, which is a mainstream school. She uses her electric wheelchair to get around; but in time for her school formal, she then became a woman on a mission: she wanted to go to the formal using her walking frame. Not only for herself, but she wanted to show her classmates what hard work and the power of perseverance can help you achieve.

“She told me that she was in this dream once and that she could walk.” – Andrew Sintras (Lia’s twin brother).

Well, Lia went on to achieve that dream to the fullest and shone like a star in a beautiful white dress bringing her family to tears as well as receiving a standing ovation from the whole school upon arriving at her formal.

The stark contrast between Josie’s and Lia’s experience has led me to recognise how much inconsistencies there are in understanding and accepting disability in the community. As American author and actor Hill Harper said: “A life without challenges is a life standing still”, so the next time you happen to see anyone who looks different to you (disability or otherwise), then I’d suggest you greet them with a warm and friendly smile or offer to strike a conversation with them instead of constantly staring at them or being dismissive of them because you may be surprised how richer your life can and will become as a result of this encounter.

You can see Lia Sintras’ road to achieving her dream chronicled in this video on https://www.youtube.com/watch?v=JB9lkRhWQFY as well as see Josie Webster’s video on this link and http://www.youtube.com/watch?v=J-Uh9senZlc .

Fighting Chance blog 19

Brothers In Arms

Adversity can either tear you apart or bring you closer together, in the case of the Kemp brothers Nash, 10 and Tate, 8 it brought them closer.

Nash Kemp is your average tween, but when life confronted him with a brother who has Cerebral Palsy (CP), he couldn’t be more proud and their strong brotherly bond is enviable.

Nash has openly said he would trade places with his brother if he could, but in hindsight it couldn’t have worked out in a better way. The hand that fate dealt them is in fact the one which allows them to play to their individual strengths. Nash has his compassion, and Tate his strength of will, each is a hero in the other’s eyes and their love for one another is obvious.

Nash is quite involved in Tate’s life, he reads Tate a bedtime story every night as well as helping him out when their mum is at the shops and their dad is at work; wherever Tate goes, Nash goes.

Despite his CP Tate continued to dream big, with big brother Nash by his side, he sought therapy through the Melbourne Cerebral Palsy Centre then went on to train for, and run the Melbourne marathon. The gates were shut when he finished the first time, but the second time he ended up completing it 2 hours faster. This was all thanks to Tate’s continuing training; running the streets of Melbourne while Nash rode beside him, encouraging him along the way.

When Sue and John Kemp were told that their newborn son, Tate, was shown to have brain damage on the MRI scan, they endured every parent’s worst heartache. Worse still was having to wait 2 years to find out exactly what they were dealing with.

Little did they know just how much of a hero their son would become, defying all the odds to achieve so much in just 8 short years. The marathon is just the start; Tate can also water-ski standing up, attends a public school and tops his class at maths.

Sue tries to not look too far ahead, taking life one month at a time because they don’t know what the future will bring for Tate, but for now she can’t help but sit back and admire the unbreakable bond her sons share together. Despite having the usual parental concerns, she never ceases to make sure Tate knows how much the whole family believes in him, as well as how proud they are of him, and I have to admire Sue’s bravery.

When almost 5 year-old Tate asked her the question that would break any mother’s heart: “Am I still going to have CP when I’m 5?” she replied “Yes, you’ll have it your whole life but I’ll always be here to support you, no matter what it takes.”

One thing’s for sure, no matter where life takes Tate next, Nash will be right by his side, urging him on, saying: “He’s more of a superhero than I’ll ever be.”

I would encourage you to watch this clip below https://www.youtube.com/watch?v=q7X-_1iPPTQ

Words from the Mouths of Babes

I’m the eldest of 3 sisters and growing up life was pretty challenging but while I was growing up my parents always supported me and encouraged me to be true to who I am.

My now 20 year-old sister found it really hard to adjust to the fact that I had a disability, on the contrary however, my youngest sister Mia always had a unique and entertaining way of expressing her understanding of my disability. 

Even though I think Mia always knew in her heart that I was different, she first made it known to me in a very age-appropriate way when she was 3 by saying:

 “God is very naughty, why did he make you not walk? I’m gonna call the police and ask them to take him to jail.”

One short year down the track Mia, thinking I was “adopted” instead of born with CP came up with this gem:

-           Me: “Mia, why do you think God made me ‘disabled’?”

-           Mia: “God made you disabled and said: ‘Who wants this girl? She’s disabled’ and Mummy and Daddy said ‘We’ll have her.’  

Obviously this is not the case but her heart was in the right place, and life is never dull with her around, she’s always keeping me on my toes. Even now at 11 years old I never know what witty remark she will come up with next.

While I’ll always feel guilty about not being able to be there for Mia in the normal way, I try to make up for it in other ways, such as bringing her chocolates and things that I pick up on my adventures, giving her free reign on my laptop, and playing with her when she has nobody else to play with.

She’s always patient with me, and is the first to offer to push me around at the shops and never makes me feel as though she is ashamed to have a sister with a disability. Mia even accompanied me to the 2012 Lady Gaga concert, and after spotting a Lady Gaga lookalike, she promptly wheeled me over to make sure we got a picture together. Mia has definitely made my life so far more interesting and exciting, which I greatly appreciate and I love my sister very much.

Whist I wouldn’t have it any other way, my heart goes out to those whom have a more severe form of CP than I, and who find it more difficult to rise above their condition. My hope is that Cerebral Palsy Awareness Week will help to inform people of the challenges and make it a little easier for all those whose lives are affected by CP.

Happy belated 5th interview anniversary James and Maria

Thank you Matoula for opening up your home and welcoming us all here today. I am grateful for being supported in allowing me to celebrate the late anniversary of my first meeting with James, a life changing, unforgettable encounter.

Growing up, I was a curious and inquisitive little girl who loved writing and celebrity pop culture and although I’m writing this speech with the intent to encourage people to create their own answer to the question, “If I could meet a (celebrity) then here’s what I would ask them”, my reason for being so persistent in manifesting this encounter with James was because of something similar but entirely different...

You would often hear about celebrity friendships forming on the set of movies, but with reality TV shows like Australian Idol, The Biggest Loser and X-Factor there is a different element to it. These shows are platforms for creating unique and life-changing friendships between celebrities and everyday people. This concept aroused my curiosity and inspired me to tap into my “Wouldn’t it be nice if...” question further.

This prompted me to want to create something that would last beyond the duration of a show’s lifespan, so I took a leaf out of their books and went on a mission to create it...

During my mid-teens, I went through one particular rough patch that I felt was going to destroy my life, with the real threat of reaching a point of no return. Amidst the grief I was feeling, one beautiful angelic person from afar continuously and constantly came through for me when times got tough: James Kannis.

Although James’ soulful singing voice on Australian Idol captivated me, what I was equally struck by was his relentless and unstoppable positive attitude to life, which always shone through no matter what. I learnt heaps from this and slowly began to make baby-steps in changing myself. I decided that he’d be the perfect overall role model to help me through this one-hell-of-a-rough-patch and beyond...

Let me explain this further: I think positivity is something we all aspire to have and we all find it in different forms. I guess the reasons I chose him was because I could relate to him in so many ways. It felt like a sib-mance and I also felt that he was someone who would always tell people the honest blunt truth (exactly how he viewed it) whether they were in a position to hear it or not. There was something nurturing about him.

Eventually I reached a point where I felt ready and happy with the progress that I’d made; I then made it my mission to track him down, meet him personally and say a heartfelt “thank you” even if I had to (literally) fight for it.

Boy did I need all the strength I could muster both spiritually and emotionally, because I actually did end up both having and needing to fight for it. My choice of role model was on the receiving end of opinions and judgements from many around me and I did get defensive reiterating the phrase, ‘don’t judge a book by its cover’. 

My heart guided me through it all, I dropped into it often and learnt to listen and trust. I knew meeting him was going to change me for the better and plus I was out on a mission to prove my critics wrong and silence them once and for all.

I did this with a complete and wholehearted level of confidence within myself. This was the start of a LIFE-CHANGING, heart-driven journey to a new emotive life.

I’m happy, proud and honoured to say that undertaking this journey for me has been so worthwhile and I wouldn’t trade it for anything, because not only have I gained two beautiful lifelong friends, role models and inspirational teachers to look up to and emulate; I’ve also gained the love and respect of an entire family that was touched by my life story.

Kannis family, this wouldn’t have been possible without you:

James – Wow... Honestly. Where do I begin? How about I start with saying: you have changed my life for the better, thank you for changing my life but not changing me in the process. As a singer, congratulations on all your achievements to date, I look forward to hearing your next musical offering soon. As a youth and crisis worker, you’re truly an inspirational person and I hope that each and every one of your clients gets to experience on some level what I have, meeting you has been such a transformative, magical, enlightening and life-changing experience, so thank heaps. Even before I met you personally, I instinctively knew that you wholeheartedly would do anything to help me change for the better and I always felt your healing and guiding energy and presence around me so thank you from the bottom of my heart for constantly and continuously coming through for me in every step of the way because I can now proudly say I AM CHANGED AND I FEEL HEAPS BETTER. Thank you so much and I love you unconditionally my beautiful angel and I’m also so proud to call you a friend and “brother”.

Lenita – Your friendship means a lot to me, where on earth have you been all my life? Thank you for giving of yourself freely and limitlessly by sharing your unique insights on the world with me and bending over backwards for me when I’ve needed you. As a mother, thank you so much for taking the time to educate your kids about my physical challenges, befriending me and helping me reconnect with one of my childhood attributes – loving unconditionally.

Sammy – Although I don’t know you that well, I’m not leaving you out of this because as James’ dad, I want and need you to know that I value the role that you played in this (in whatever way) as equally as everyone else’s so, I'd like to thank you from the bottom of my heart. Thank you for greeting me when we finally met with a very exciting and heart-warming smile as well as accepting my “Daddy K” and “Daddy Kannis” references (which were derived from the fact that you and Selina have the same initials and I didn’t want to confuse myself between you two).

Yaya Matoula and papou George – Lenita and Mark’s kids are so lucky to have grandparents like you. Thank you for recognising the impact that both my friendships with Lenita and James has had on me. Thank you for making a special space in your heart for me and placing me in it. Thank you for your unconditional love, friendship and support as well as “adopting” and “declaring” me as your 7^th grandchild.

Papou George - I would like to thank you from the bottom of my heart for embracing everything that you’ve heard about with an openly loving heart (before even meeting me personally). 

Orion, Eros and Selina – I love you all the same way so thank you so much for your love, support, respect and acceptance of me. Growing up, I wanted to be a school teacher but had to throw that dream down the pipeline because I didn’t have the best “acceptance record” with kids, luckily, meeting you guys has changed all that, so thank you so very much for giving me hope and helping restore my faith in that department.

Last but not at all least Mark (Lenita’s little brother) – I never thought that sending you a short introductory message would be the starting point for me to get to know you as James Kannis’ maternal uncle. I would like to thank you from the bottom of my heart for embracing everything that you’ve heard about me with an openly loving heart (even before meeting me personally) and for kindly and graciously taking the time to help me find a good (and hopefully permanent) dentist as well as for seeing a role model in me and believing that my general outlook on life is worth mimicking.

Khryssa and George (junior) – Even though I haven’t met you personally yet, you two have already won my heart. Know that you're always loved, cherished, and adored as you go on to make your mark on this big world as well as find your place in it, wherever that may be. I also hope that my story may instil in you a fighting spirit, bravery, courage and resilience. I love you and I look forward to meeting you both soon one day.  

Amy – Thank you from the bottom of my heart for supporting the life-changing journey that James has taken me on each and every step of the way as well as supporting and respecting the openness we have with each other as role models and in our friendship. I look forward to getting to know you personally (individually as well as, as James’ girlfriend). I love you so much and thank you.

   

Conclusively, I have one final message, my advice to anyone wanting to undertake a journey like this is:

i)         Be prepared to take responsibility for your actions.

ii)        Know where your headspace is at before and after undertaking the journey.

iii)       If you wish to treat it as a “learning curve” then be prepared to make tough and/or strict decisions when and/or if you feel required to.

iv)       Learn to distinguish the difference between the “personal humanitarian” part and the “showbiz and fame” part.

v)        Try not to play the “blame game” when life’s unpredictabilities, milestones and/or bad days get in the way without getting complacent because I’m living proof that celebrity encounters can turn into life-changing experiences if navigated the right way.

Fighting Chance blog 18

The cost of employment

For most young adults, having a job is something they identify with (specifically if their chosen career field requires them to work their way from the ground up) and getting a job is hard enough as it is, at the best of times.

Please note that it’s not just a generational thing because there are genuinely honest and hard-working people (like myself) out there who just want to be given whatever work opportunities we can get our hands on.

But what if your work position was jepordised by physical injury (even permanent paralysis) and caused you to have to change your employment direction and/or take on an unpreferred position?

Newcastle Knights player Alex McKinnon was in negotiations to have his contract extended for another 2 years, before his career as a football player came to an abrupt end when he broke his neck in a tackle whilst playing against the Melbourne Storm last month which left him wheelchair-bound.

While he didn’t have to contemplate and/or sacrifice leaving the job he loves, and was able to maintain his job by getting a permanent position on the NRL injury board instead, I regrettably had to leave my previous job, in search of something which eventually did go on to help me fulfill and grow my passion for writing further – Fighting Chance Australia.

As disheartening as this was for me, it also gave me some perspective in helping me realise how hard and tedious it is for school leavers to get a job and to not hope (especially if the work field that you’ve chosen is harder to crack – for example: singing/songwriting, journalism and/or acting) because while they’re all creative mediums that fuel one’s passion, you’re often required to have a second job to help maintain social stimulation and generate a financial income.

In concluding this article, my final message will be one of hope, which is that rejection is a part of life and can sometimes test you but it’s in no way whatsoever a cause to give up on your hopes and dreams but can make you a stronger and better person by instilling resilience in you, because although Alex McKinnon will be on a journey to rewrite his own story, let this be proof for all readers that you can still maintain their job positions after setbacks, adversity and/or injury, you just have to find a way to use it differently.