Saturday, March 24, 2012
Purple Day 2012
It's time to step out . . .
. . . from under the shadows
My name is Debbie and I confess to having epilepsy like 1 in every 50 people! If epilepsy is so common why and I tell you this? I need to announce that I along with thousands of other Australian have chosen today March 26 2012 to step out of the shadows and tell people we have epilepsy by wearing purple! March 26 is purple day!
We want to invite you to come and stand beside us in the bright sunshine and stick out like a sore thumb by wearing purple today!
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| CASSIDY MEGAN |
Purple Day was started in 2006 by Cassidy Megan who was only 10 years old at the time. Cassidy simply wanted “people epilepsy to know they were not alone.” Will you wear purple with her today to see her dream achieved?
This year I in choosing to step out from under the shadow and pulling on my purple day T-shirt I will be supporting Epilepsy Queensland and Epilepsy Action Australia. Many I take this opportunity to ask you to become a Purple Day Hero by making a donation to one of these organisations or pick up some purple day merchandise. The links are in the right had column.
Epilepsy is a very common disorder in our community and yet many myths surrounding the disorder and first aid of seizures still exist. Since suffering my first seizure over 20 years ago, people has offer applied inappropriate first-aid. One of the goals of Epilepsy Action Australia this year is to educated people on basic first-aid for people who experience grand-mal seizure, chatonic seizures or complex partial seizures. These are these are the types of seizures you many one day wittiness. Although there are over 40 different types of seizures and not all of them are classify as epileptic seizures.
In explain basic first-aid procedures it is often easier to tell my family, friends and support workers what not to do. Rather than present a first-aid blurb myself I’d like to ask you to watch the video in the previous post and then download the first-aid poster at Epilepsy Queensland
When I moved out home (for the second time – a typical Aussie kid) they was a mixed reaction. Some people were horrified my parents would let me leave home. Well at 28 thought to ask my parents permission didn’t occur to me and to them it had become obvious that I was not happy and needed to try to live independently. And then the what ifs. What if I had a seizure, like it had never happen before.
The truth be told, my seizure are probably not epileptic and are complex partial seizures. While basic first aid is often needed but not necessary. I am fortunate I usual get a warning. If I am at home I simply lie on my bed, have a seizure and then roll over and go to sleep. The other blessing is I have most of me seizure at night and less I am unwell. When I get sick for some reason that throws my medication level out.
I am part of the 30% of people whose seizure can not be fully controlled. I am told this is the norm form people who have a combination of Cerebral Palsy and epilepsy. CP does not define who I am and thus I am determine to not let my seizures define me either. I accept it prevents me form having a full time job and driving a car, but that’s where the limits stop. Those too limits are imposed by other people not me.
"Epilepsy doesn’t define me!"
So now I walking in the sunshine will you join me by wearing bright purple on March 26 Every Year?
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Friday, March 23, 2012
Wednesday, March 21, 2012
Monday, March 19, 2012
Sunday, March 18, 2012
Thursday, March 15, 2012
Stand up to Bullying
It seems that anyone who is in someway different can be bullied. Today is International Day Against Bullying! Recently in the States a high school boy was bullied simply for wearing a PINK Shirt to school. To support this boy and to stand up to this Bully, the students decided they all wear pink shirts to school. So the bullies be the ones that stand out. The teachers decided they would support the students, by this is very much a movement driven by students. When other school heard the students decided they wear pink shirts to school today to. Proving that it only takes one person to create change, regardless of their age.
The truth is bulling isn't about the person whose being bullied, but the bully trying to make themselves feel better about themselves. The fact that the students chose a guy in a pink shirt that day proves that. You can be too short, too tall, too fat, too thin, to smart, to dumb, black, white, Asian, wear glasses or hearing aids, have a disability or just wear a pink shirt.
If a bully is looking for a target he or she isn't looking for a particular type of person, just anyone who I can feel superior to. I wish I knew that as a child. I was bullied for most of my school life because I had CP. Although I didn't always see it that way.
At one stage I convinced myself it was because needed to wear different school shoes. A bit like the boy in the pink shirt I guess. Somehow I convinced my mum and my physiotherapists to let me wear normal school shoes. Of course that didn't stop them for bulling me. Looking back, I was trying invein to look just like them and that gave them the power th needed to reduced me to tears and hide out in the library. That lasted until I was in Senior when I stood up and challenged the bullies. In effect I made a claim I was stronger than them. At least on the inside. The bullying stopped that day. Of course bullying doesn't stop because you grow up. The bullies grow up too. I have been bullied in different ways at different times during my adult life, because the person wanted to prove to themselves that thet were better than me of I needed them. So let's all stand up to bullies today. .
How do we communicate?
After 43 years, I still wonder, why people receive that people with disabilities such as cerebral Palsy, especially those who are who are non verbal are lower of intelligence or as intellectual disabilities. As I watch my non verbal, talk with them and laugh with them. I can't help wonder what it is like for people who are also non-verbal and don't enjoy the depth of friendship that we share.
Recent debate over facilitate communication has me hot under the collar and the organisations who advocate for people with disabilities consider even questioning this means of communication, just does my mind in. This an issue I thought we put to bed in the late 1980's.
There is no doubt in my mind that facilitated communication is a valid from of communication. I guess due to my life experience I have never stopped to question other people's intelligence. I am yet to meet anyone I can not communicate with on some level.
And yet there are other people I meet and (verbally) with talk and yet fail to communicate. The presence of saying something to someone does not mean meaningful communication has talk place, nor does it tell you any thing of the intellectual ability of people who are talking.
For example when the shop assistance ask you how you day is, are you speaking because that's what people do or are you having a meaningfully communication with someone. I assume if you are reading this you at least have the comparsity to understand the difference between dialogue and communication. If not ask of parent of a teenager?
Communication implies a level of understanding between two people, if I am with a non-verbal friend and they laugh at my joke that tells you they have heard something fully and thus communication has taken place. The fact my friend does not have the motor skills to use a communication devices does not incidate on any level their ability to understand and communicate with me.
I wish everyone at some stage of their life had to learn, eye language. Yes I said eye language. People waking from commas use it offer, before the ability to speak returns. Even people who can make some noise, like laugher I find prefer to talk with their eyes. You know by some eyes whether you connect of not and people eyes often tell me they're are talking but not connecting.
Can facilitated be manipulated of course? So we should dismiss it and not let people access that means of communication. I am not allow to surgical remove your ability to talk so why should anyone deny anyone the right to attempt to communicate. Just because it is manipulated by a few dishonest people?
I do wonder if our failure to communicate non-verbally saids more about our own intelligence rather than the person were talking too. ..
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| This quote just seem to fit |
Wednesday, March 14, 2012
Thursday, March 8, 2012
You Decide
Al Jazeera's Response
KONY 2012
"She make's some interesting points,
Of course someone should ask what
the people of Urunga want!"
THANK YOU Al Jaeera for
Speaking Up!
Where is Kony?
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| A suggested alternative to KONY 2012 LOGO |
I admit the are several inconsistencies with the fine KONY 2012 Campaign. I like millions around the world watched the utube clip and was appealed that I too was caught up in the cry for justice and only now stopping to ask questions .
As I begin to read both sides of the argument and sort the fact from fiction, there is one thing everyone agrees with and that is Joseph Kony has gotten away with numinous crimes against humanity for over 2 decades, with little or no media attention. The best thing about thing about the KONY 2012 movement is the world is engaged in conversation. But is this movement directing its funds and energies the right way in the right places? I do not pretend to know.
While other friends and colleagues are removing blog posts. I am choosing to leave mine up. I would hope my readers are intelligent enough to read both sides of the argument and decide for themselves if that is fence sitting, then for now I am sitting on the fence. As I said in my previous post there are inaconsinaries in both arguments.
One thing I think we all agree on is the film clip put together by the Invisible Children Organization was a over simplization of a complex issue. As I pervious explain, while explaining the who Joseph Kony is to his 4 year old son, the concept of this simply being a case of good vs evil is wrong. What happens if we can never find Kony? How will this ever be explained?
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| The face that's got everyone talking |
Although thousands of innocent children have suffered because on Kony this is not child's play. Personally unlike Bin Lidan few years in hiding Kony has evaded capture for decades and I don't think anyone can say for 100% sure which country Kony is present in and if he's there today he will still be there in a month time.
I believe the film was correct in its reporting the Joseph Kony is skilled at jungle warfare. I bet here not silly enough to hid out in a compound laughing at us and the small band of the US army because we can't find him. This is a highly intelligent trained solider with 30 years experience, I don't think you can begin to compare him with a radical lead like Bin Larden, nor the highly structured dictatorship of Hitler and Husiam.
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| No one knows Kony's where abouts! |
World Wide Out Cry
STOP KONY 2012
The campaign to find Joseph Knoy is one of fasters growing campaigns we having ever scene. Since its launch a few days ago, millions of social network users have pledge their support for the KONY 2012 campaign, including myself. However, were we suck into this cause with too little information?
If nothing else the events of the last 24 hours reveals the true potential of social media sites to influences and mobilized millions of people around the world very quickly. I think marketers are only just realizing what a powerful tool the web of social network sites are. There are not many websites left that don’t access social media tools.
Despite my natural scepticism urspion and some conflicting posts on my facebook wall I jumped on the band wagon after watching the carefully produced utub clip. I was capture by the produces focus on two young boys. But was he like Knoy exploiting these children to achieve his groups own political agenda.
From an analytical view that answer is undeniable yes. The man used a child about the age of there or four to answer questions we as adults struggle to answer each day through about the video. If children in the video drew the conclusion that this evil man must be stopped then like everyone else my heart strings were pulled no wonder this thing multiplied so quickly.
A wise person once told me there is ‘good’ and ‘bad’ in everything. We should remember that no where more true than in the media. Every news story has some element of truth in it. The real issue or debate is how much truth is being report by who and why?
So rest assured regardless of what you have read and herd of Joseph Kony and the organization behind this clever utube and social media campaign, each story and report on reports the facts they want you to know. They give you only the facts the need to support their side of the story. I cringe when I think how I failed my own principles of research after watching the clip last night.
I do think after my more in-depth research today my conclusion and reaction would have been the same. In reading the responsible to criticism of invisible children website points of their campaign has three phases and argues each phase has been allocate roughly the same budget. They have gone to great pains to present their budget and finances for 2011 after being criticised for only spending 30% of money raised on the actuarial search for Kony.
If we criticise this organization for over simplify the message, then we need to be aware those on the other side of argument are guilty as well. It is logical if the charity has a three stage plan they have only allocated 30% present of the budget. In there reporting we are somewhat mislead to where the other 70% that was raised was spent.
Just to add this group has taken 8 years to get there message out. Putting Kony's name on people lips through public awareness is only one activity. They have also worked with the people of Uganda rebuilt schools; set up rehabilitation centres, provide scholarships and set up radio transition system to warn people that the army approaching the village. It wasn’t spelt out so we concluded it was admin costs. Critics want us to stop supporting this cause, so the didn’t give us the whole picture.
Just as the documentary took careful steps to show Joseph Kony was the top of the International Crimes Court list, I like many drew the conclusion that is was because of the nature and the scale of his crimes, not that it had to do with being on the wanted list for the longest. What ever side of the fence you sit you can’t deny this man as escape justice for the last 25 years
.
Whether there film was correct or not this group has achieved its first objective to make known Kony’s name and his terrorization of most of Northern Africa for decades. As to whether the next phases are correct, I do not know. I am not a humanitarian and I have never visited Africa.
I do know I want Kony stopped and my involvement in the campaign is the best way to make than known. I just hope in the future I do my homework better before jumping on the band wagon.
Wednesday, March 7, 2012
Social Justice . . . A Christian Response
Should Christians get involve in Social Justice? From the out set, I want to make it clear my answer is YES! While Jesus made it clear our primary roll here on earth is to be embarrasses of the gospel I believe his Sermon on the Mount give a clear mandate for . Christians to be involved in seeks justice while we are on earth.
While we are not saved by our works our faith without works are dead. Then Jesus answered them What I am about to tell you is the truth. Anything you did for the least of these, you did for me (Matthew 25:45) Jesus added the people who failed to care for people in need should depart from him.
Is there a better way to represent the gospel than to been seen as caring for the most at risk member members of our community? Have said that, as a member of Pay It Forward community, I am a firm believer that every member of our community is deserving of being the recipient of kindness from another human being.
It is easy to see the needs of the homeless, single mums, people with disabilities, the poor, the hungry and those who are perhaps ‘broken in spirit’ in our community. However, people’s needs are not always visible.
We have not way of knowing if the person sitting next to us in the bus or the check-out chick is suffering emotionally, or even if they have a hidden disability. If we are fair dinkum about showing the compassion of Christ, then we should not be looking for the person ‘we think needs to be shown kindness the most.
Let us all act with compassion to out felloe man.
Monday, March 5, 2012
Online Poetry Festival by Australian Poetry on Pozible
Hi As a writer with a significant physical disability, I have to appreciate the power of social connecting. Though facebook, twitter and blogger, I have been able to connect with other writers and industry expertise not just in Australia but around the world. Travelling is one for the many challenges I face as a writer. I am accurate aware of the disadvantage I am at because book fairs, conferences and writers festivals are difficult to attend.
I know this because on the few occasions I have been able to attend such events I have gained a wealth of knowledge, skills, had creative ideas sparked and add key contacts to my networks. Writing events is where my passions most feel alive. For all its perceived glamorization the process of sitting and writing and rewriting and then editing and proof reading, read is only 10% of the product of a book or creation of an artwork. When you click that last full stop - the real work begins.
That last 90% of the project are where the hard yards lie for me. Working with publishers, editors, illustrators, proof readers. Pouring over proofs, cover design . . . . and then there's the market and sales. Books no matter how well they're written, sorry to tell you don't sell themselves. I know you need well developed networks and other authors around you before those first few pagers roll off the printing press.
Traditionally the place where network development occurs and marketing is at writers festivals. What a valuable tool the Internet and social media sites have become to me as a writer. I can be part of writers group; self publish on blogs, promote myself, research heaps and even attend conferences and festival online.
So that's why I excited to learn about Australian's Poetry Online Poetry project and a new way for artist to raise funds for their projects through Pozible. I would like to encourage you to take time to look at both the opportunities and to get involved.
Sunday, March 4, 2012
Saturday, March 3, 2012
The time to act is now
The Queensland State election are looming, the political boxing gloves are on and the mud is beginning to stick . . . But as the ballot box day draws nearer, so do does my tension of who to vote for. Over the years I have developed a healthily skypetism about politicians ability to create any real change.
This year I fine myself unusually unsettled, as our leaders throw mud at each other, I’ve heard little on the polices that affect me the most and nothing on the economy, debit reduction or costings. Three weeks before I vote all I see are over stressed government department long for restructuring or a recent restructuring which has only added to systemic failure to keep demand with our population growth. On health, caring for the homeless, mentally ill and people with disabilities, their families and careers I have heard nothing.
Its like Queensland politicians are buying time until hopefully the federal government takes the problems of their hands. There’s plenty of talk, facts and figures currently being bantered around Canberra and lot of smiles behind NAIDS T-shirt and photo opportunities, but smiles don’t pay for my medical costs, my health needs, my mobility aids or my support costs.
The current disability sector in Queensland is at crisis point. Historically it was established in response to de-industrialization, to support people to live in the community. But failed in its initial recognization that there were other community members with disabilities who needed assistance. Thus, while the department recognized the need, its foundation resources didn’t and still doesn’t have the compasity to meet these previously unidentified needs. But successive governments have chosen not to deal with the fundamental issues.
As a person with a disability it feels like everyone wishes the issues would go away, because so many people who are in this position to address these fundament issues put it in the too hard basket. This election both sides of politics have failed to offer any solution to correct these and other mistakes. This history of failure to care for the most vulnerable members in our community has recently become personal.
As I discovered the true position I face living with a disability which has increasing impact as I age, places me in. If you like `the crunch time' has arrived. Without gaining funding through the Department of communities my support needs become unfunded able until I reach 60 yr. There is little provision for some my age, with my ‘perceived’ level of disability to be able to afford to live independently in the community.
My only hope of holding on to the few hours a week help I get, is to get political. Yet how do I chose which candidate to vote for when no candidates are willing to discuss the issues that matter to me, because the federal government is making a few noises about taking over. We herd that with water and with hospitals and yet this issues with these departments still exist with only a few bandaid solutions been apply without any new major funding.
Without political discussion at state level how do I begin to decide who to vote for? Right now Mickey Mouse is sounding like a better candidate to address these and other issues come March 24.
I can not support anyone without someone willing to put ideas on the table and admit we can survive with political ifs, whens and maybes’. Please help us members of the community who maybe less in numbers ask the hard questions we need to ask. We still need our voice herd at state level. Please tell everyone you know about my blog post. The TIME TO ACT IS NOW! Thank you
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