Monday, November 18, 2013

Movember yes to the mo for men's health

Hello buccaneers

Want to see how long the Asian mo can grow? Please support me and the Mamre moustachioed Movember men in the epic facial hair growth. Check out my facebook and mo pages for updates.

The bold one eyed pirate

Saturday, November 16, 2013

Ditched and raw.

Hi everyone,

If time could be filtered through the sieve of uni, presentations and unexpected changes, I would be left with the luxury of blogging, Facebook and writing. I have been upset and confused by how easily people leave and fragile my true voice is when the very few people I trust move on to bigger and better greater aspirations.

Kind videos of silliness and repetition soothes and numbs the hurt of feeling ditched and fear of disappearing into a ghost that is mute, expressionless and unhuman. Up is the way to go but the journey is hard. Letting in new people is like unbolting a thousand complicated locks on a titanium bullet proof door on my well guarded heart and mind.

I find my head exploding with so much to say but I am only free for too few sweet moments. One liners are often my staple and full expression like what you see now is only an exquisite short lived treat.

I must dash now. Again and again.


Wednesday, August 7, 2013

Yes The Pain of Really FC.

The sad frightening reminder of the really feeling of being completely alone and trapped in a stupid body creeps into my thoughts and emotions like a nightmare of baseballs being thrown at you by bodybuilders. It's painful, bruising and long lasting.

Friends have a use by date. Support workers no matter how awesome will move on. People get busy and the thing is you will be forgotten like yesterday's newspaper stories.

Help with university is a challenge with new people unfamiliar with my version of FC. The real true me doesn't make it to daylight in the awkward tango of two left feet, forging of fragile trust ahead of the battles of another day on campus. Gets frustrating but I'm blessed with people who go the extra miles and think that I am actually pretty clever and witty even though I'm reduced to single word replies and rating scales.

Yes it is a new voyage and I'm about to be a seasoned pirate who faced the choppy seas and conquered.

[Typing time: 25mins]

Thursday, April 4, 2013

Greatest worry, defiant arr.

The greatest worry is losing a dream so toiled for and  so really sought after. I am at risk of not being able to continue studying my dream degree because the funding I need will run out next week. my poor tired overstressed parents are  fighting hard for me to find support for me. I am finding it hard to concentrate and throw myself in my studies because it may suddenly end and my slow laborious letter by letter work may count for nothing.

Being able to present in front of health professionals and students with QCIDD (Queensland Centre of Developmental and Intellectual Disability) is exhilarating and I am filled with hope that as I reflect on my journey God has graciously put kind and generous people in my life to help me through and open doors for me. I see myself as a young man with purpose and worth.

I am proud to be a uni student but I fear it wont be the case soon. But I fight again just like I have my whole life once I had the realisation that I am not what people label me as or what they think I am capable of. I think it is too easy to believe you won't make it and that you are only worth as much as what people think.

That is the easy thing to think, but I am bold, one-eyed for cameras and a stubborn plundering pirate who is claiming his right to education, freedom and antidiscrimination. hollering out a triumphant "arrr".

[Typing time: 27 mins]

Friday, March 29, 2013

Seek to understand.

Thinking that some people are awful. I think the greatest weapon against ignorance, bullying and misinformation and general meaness is civilised and witty come backs and facts.

Thank you to those who think these are my own words and thoughts. because if they were not then I am the best puppet who would slave for hours at a time at my iPad typing the most random perspectives and thoughts that belonged to someone else trying to fake the world just for fun. 

It angers and disappoints me that people can be so harsh because they do not understand and make such destructive assumptions. If they actually did more open minded research and investigated the stories of real people who have used facilitated communication as a stepping stone to completely independent no touch communication then maybe for some people the controversy will end.

Thinking that surprisingly enough science cannot always explain things. But it does not mean that that will always be the case. The break between unknown and known is time, understanding and exploration of different methods to capture adequately and explain objectively a new phenomenon. Because the closed minded skeptic was the one who actively opposed the new scientific findings or natural phenomena of social or linguistic or cultural trends and was opposed to develop understanding. 

Soon you'll be thinking that your views are the only right one because the alternatives frighten and challenge you to change your attitude and actions. I think the most challenging debates are around people who are different to you. And the differences could be skin colour determining your value and opportunities in society, your ethnicity and education determining your level of prosperity, your method of communication determining your ability to exist as an actual human being or the type of disability determining your level of funding and acceptance from the general public. 

Disability especially is a touchy topic. If you don't have that type of disability you will not ever fully understand what it is like even if you are a researcher, casual observer, support worker or even a family member. If you had the disability but was raised differently and had different opportunities and challenges then you cannot fully understand either. Why? Because everyone experiences the out-workings of their disability differently. but it does not mean you should not seek to understand. Especially those who communicate differently.  Just like those who signs to communicate or those who struggle to direct their movements purposefully such as those with cerebral palsy to speak or point - can't such acceptance be afforded to those with other neurological and sensory differences? 

Yes I hope your answer will be a yes even when you are in a hurry, in an awkward situation or just plain tired. An understanding soul is hard to find but I hope to be pleasantly surprised and everyone else who is like me yet with their own stories to share.

[Typing time: 1 hour 21 mins]

Sunday, February 3, 2013

Time to reflect

Think intro. The thinker in a blender of guessing and your daily worry of every thing possibly going wrong and whether you will survive the weight of expectations. I have seated the fight of proving myself to the back of the car and take pleasure in the smaller uncomplicated things in life like maintaining decent moustache, wearing funky clothing and smiley face at funny conversations I overhear. I think it's been a time of discovering that there is a time for everything and taking time to be incognito is not laziness but a wise decision. Just a birthday coming ahead. Some make a big deal out of it saying its a thoughtful celebration of a person becoming an adult or an excuse to party hard and drop good wishes on the ageing person.

Hello josh you are getting older and I hope more good looking too as you hit 21. Maybe time to do some party planning and come out of incognito mode. Prefer coke to beer but willing to be convinced if there is good trade offs.  

In there from griffith it's nearly o week. Pretty excited and keen to exercise flabby brain and experience the campus life bar tipsy nights. Yes I am a proud nerd and strange too but I like being different. Been like that my whole life.