When the pieces don’t fit!

Life is like a giant puzzle which we all are struggling through our individual journeys to fit together to complete the pictures that capture the stories of our lives. Pieces like the faces of family members, friends, neighbours and significant others like teachers that look together inner woven to form the patterns of our journeys and shape our lives.

Some are like photos that contain happy memories reminding us of joy, love and celebrations, have been apart of the fabric of the puzzle. Others pieces contain the people who have journey with us. People we were given to, grew-up with, meet, fell in love with, got to know. journeyed with, parted with, left and were torn from us. Then there are perhaps the pieces we rather weren’t there to tell the story. The pieces that hurt and cause us pain and sorrow.  The loves ones lost; the events that rocked us; made us question what we believed or even who we are? The things and events that confused us, annoyed us and even angered us.

Like it or not! Good or bad! Loving or evil? Each person we meet places a piece in the puzzle we must take and except and place it somewhere with in the picture which will be completed on the day we died.  The puzzle filled with the mysteries of life, which form other from the snap shots of memories left when we leave this world behind.

Some days when I pause to look and remember both the joys and the sorrows; my success and failures; the blessings and regrets, I see only confusion, mystery, doubt and frustration. As I struggle to somehow make sense of a puzzle that may actually be round. When in vein I have wasted time searching for the corner pieces and the straight edges that don’t exist.

Please tick the box, is usually where the trouble starts and the piece begin to disconnect.  Oh sure there are the boxes each of us can tick at different stages of our lives. Well most of us anyway. Male or Female, single, marriage, separated, divorced, never married, defacto you see even as the forms we must enter our information on to, must change as life evolves or mutates. Some of us and I suspect all of us lie outside the perfect box or picture the world wants to create.

Which best describes you? Living with your parents? Living with family? Living with siblings? Sharing a house?  Living as a couple? Living with extended family? To families in the same home? Live alone? And if you happen to have a disability like me, there’s the added box of lives independently, like you can live by yourself and not be independent? Now they want to added more boxes, lives in supported accommodation; lives with some support, low support or high support? The questions with their boxes to tick or not, continue.

To me the direction to tick the box proves meaningless. As we journey through life collecting the pieces of our puzzles as individuals with continuing to grow, develop abilities, skills and talents and having complex individual needs. The boxes created by a technological age, that creates the need for black and white answers leave me continually feeling like a misfit in a world the constantly wants to box me in.

The boxes are all to often where the comparisons begin . . . Once you tick a box and you are tagged with a label.  “Never married”; “Middle aged”; “Person with a disability” and “Living in the community with some support.” The trouble is once boxes are designed and tags or labels are assigned, we all begin to make judgments against norms in society to which our puzzles pieces do not conform.

Boxes are designed specifically to allow us to put like with like, group and compare to tell us what Mr or Mrs of Miss or Ms or Dr average should look like, conform not and behave like. A ‘norm’ to which any behavioural scientist like myself will tell you does not exist.

The mere fact I am a Christian Behavioural Scientist born with Cerebral Palsy should give anyone cause not to attempt to box me into a lifestyle box. I can’t help but sit here and burst into fits of laughter remembering that statistical analysis is what I am trained to do.  The irony of this blog post does not escape me. If anyone knows the endless attempt to find norms, that don’t exist, it is yours truly!  

Yet as I fight this fight. daily to shouting! I AM NOT NORMAL AND WILL NEVER BE NORMAL! THUS CAN NOT BE COMPARED OR CONFORMED NOT NORMAL! SIMPLY BECAUSE NORMAL IS A LINE ON A STATISTICAL CURVE THAT THAT MOVES CONSTANTLY OVER TIME!

POINT BLANK NORMAL DOES NOT EXIST!

So in my quest to put together the puzzle of my life, the demands to meet norms and standards other like to think they have the right to determine and dictate never fills me with warm fuzzes. No more is this true than in my home.

Forget the norms and standards that would suggest someone with a disability of my classification should not live alone;  That I am unemployable because I have epilepsy; that because I don’t have a full-time job – 4 part-time ones are not equivant because some are unpaid; Living independently with a disability means I am lonely, board isolated, depressed and therefore watch TV all day.

My daily battle continues with family members, friends, neighbours, medical professionals, health professionals and support workers is the right to make my own choices and determine how my own home looks and the activities I undertake. 

Having won the battle to live independently in my home, I find myself under constant security by well meaning people.  The assumption is my home should meet some kind of universal standard of what ‘a home’ is and how it should operate.

Apparently that doesn’t include my office and make shift art studio.  Paint brush sticking out of jars of various coloured water placed on the kitchen table; with half painted canvases and pastels rubbed in the carpet of my rented apartment seem to failed this invisible norm of what my home should look like.

Instead it has been decided that my art; my paint brushed, my manuscripts, my poetic scribble books should be put away out of sight often in inaccessible parts of my home. So to end my frustration I go and buy more supplies to play hide and seek with my support workers and well meaning friends.

So if you have any advice about pieces of the puzzle of my life and where they might  be best placed, please  remember my theory is the puzzle has no corners and norms do not apply.           

Should my art be tolerated or celebrated!

A large part of my leadership Journey is focused on my art and encouraging people with disabilities to use their talents and passions to become more involve in the wider community. I believe in encouraging people with all disabilities to embrace their abilities what ever they maybe to begin to engage in mainstream community life.   

However as the fallout for National Cultural Policy continues I wonder what exactly I am offering to the people I will be mentoring, employing and offering services to through my ArtISability Professional Development Program. I do not want to offer ‘second best’ or tokenism approaches to artists with a disability. For far to long people with disabilities has been placed in the ‘special bracket’.

Professional Development Program for Artist with a Disabilty

That’s nice or aren’t they having fun.  It’s great they can do something they enjoy together! However far to often that’s where the appreciation of sporting achievements, artist ability, performance such as signing and acting go.  That’s not to bad for someone with a disability. Just as well no one mention that to Stevie Wonder. Stevie wonder, thank goodness is recognised first and foremost as have a uqunic vocal ability and his disability rarely rates a mention and that’s how I think it should be for all artist and sportsmen and women.  Personally I would love to see an end to the paraolympics  with social inclusion for athletics with a disability happening as one Olympics Games jointly occurring in the same sporting arenas at the same time.

The release of the National Cultural Policy  last month puts all that at risk.  The policy states that the artistic ability of artist with a disability should be ‘tolerated’.  Thrusting artists with a disability right back into the ‘that’s nice!’ with a condescending smile on able-body artist faces.  Why should my art be valued and less because I have a disability. If the same was suggested for the art of indigenous Australians there would be outrage and demonstrations. Despite the UN anti discrimination act for people with disabilities nations such as Australia continue to dish out policy than contain judgmental statements.

A statement by Artists with A Disability

As a published author and poet the fact I have a disability could very well go unnoticed except I largely choose to write about the subject I live and breath – living with my disabilities so why should my participation in the visual artist be any different.  Why is my artwork labelled ‘special’ and not my poetic ability. I wonder if under the new national cultural policy if my poetry, like my art will just be tolerated, rather than embraced and celebrated.We maybe years away for true social inclusion in this country, but surely we can make a better attempt in writing policies for people with disabilities than the poorly written National Cultural Policy.

Below are samples of my artwork I’ll leave you decided it you wish to ‘tolerated’ or celebrate.     

   

When the pieces don't fit!

For all of us at time life can appear as frustrating as putting together a jigsaw puzzle without any clues as to what the picture of the puzzle may be. Life both contains mystery and confusion as we try to navigate the path ahead.

However, for some of us the puzzle never fits together and the side pieces to the picture frame are never found, leaving the boundaries in which we live unclear and distorted! Today 2^nd April is World Autism Awareness.  People with autism lie some where on a continuous spectrum and may experience a wide rage of problems associated with disorder. These may include cognitive problems, communication problems, behavioural problems, problems connection with others, lack of social skills and even physical function may be impaired.

One mystery that has bow been unlocked for us is that autism is not an intellectual disability although suffers can experience learning difficulties due to the way they process information.

There brain is the one organ in the body we understand the least and in the case of Autism many pieces of the puzzle remain missing.  While more and more pieces of the world in which people with autism are located we know the way they view the word is very different to our own.  Autism appear to impair a person ability to block and navigate through the continues simulation, of light, colour, sound, speech, images, information, technology and routine. It appears this constant change impair a persons ability in function is the areas where they as individuals appeared challenge.

One father explain that his son doesn’t distinguish between people and objects.  In his view we are just another object or simulators competing for them attention in a constant state of confusion. You to many people with autism are just another piece of a jigsaw the don’t know where to fit.

            

A Love Story

It’s Easter and here in Australia there’s a four day break to mark the occasion. For many its a time to catch up with family and friends, while others it a chance to over indulged in chocolate. For very young its about the joy of the secretly of the Easter bunny and hunter for Easter Eggs.

But is this what Easter is really about?  Despite misconceptions for Christians Easter is the most holiest  event on the Christian Calender. It is a time of reflection as we remember the central core of our faith.  At the core of Christianity is the cross.  Without the cross our faith becomes meaningless.

So you may the wondering what is so important about a cross?  Hang-on I didn’t say a cross, I said THE CROSS! THE CROSS – that JESUS CHRIST was nailed to.  The cross was designed to put to death, men who broke the law, but also in the case of Christ THE CROSS was designed to up to death the growth of a new movement that threaten the major  religion of that period of history, Judaism.

THE CROSS Jesus was nailed to failed in its mission on both counts.  This is what as Christian we celebrated at Easter.  THE CROSS failed to end the life of Jesus.  He rose from the death, in doing so of we believe the Jesus defeated death itself.  By rising form the death Jesus destroyed the one thing that could separate us from his Father, the thing which God can not accept into the kingdom of heaven where He rein’s is sin. And THE CROSS failed in its mission to stop people following the teaching of Christ. Christianity continues to spread through the world.

The act of sin was introduce by mankind through the temptation of God’s arch emery Satin also known as the ‘devil’.  Where living in the garden entitled mankind to eternal life, the lies of the devil broke our trust with God.  “We became wise” – this was sin.  We thought for the first time we could question and reason with God. Mankind was and God vanish us from the garden, we then had to earn of food, buy growing our own crops.  Mankind was forced now to labour and the relationship between God and man was broken. Man and women would now die and experience total separation from God, whom he was created for the sole purpose to love God and be loved by God, sin through one act of rebellion destroyed this.

It would take a pure act of love to rebuild what man had destroyed. It would take THE CROSS!  For me Easter is a change to remember the greatest love story in history.  It dates our calendar and it dates history. The sole reason God who created the universe  became one of us was to die and break the chain of death that locked us out of the garden. But unlike us he resisted the temptation of the emery and temptation to sin.  At the time of his death no wronging doing could be found.  He was an unblemished sacrifice, mankind had finally killed God.

That was until Jesus defeated death by rising from death. By this defeat Satin had lost his hold on death and the sin that separated us from God. Jesus had restored the broken relationship between us and himself.  Because of the sufferings of Christ I will never experience the suffering of hell. However the cross did not destroy the free will of man nor the presence of sin. We are still banish from the garden and still have to toil to sustain our lives. The presence sin as death remain a reality of our lives and the results are visible all around us.  We remain wise like God and all too often we feel we know better than God.

The only way to break our personal chain of death is through the cross.  We have to acknowledged it was us the nailed Jesus to the cross. Each of us deserved to be nailed to the cross. However such was God’s love for us, he allowed his son, part of him to be nailed to the cross instead. The blood that was spilt during his death covers sin. 

We are still sinful but through the power of the cross our sins are block from God’s sight. You to can experience this joy of Easter has to offer through the forgiveness of the cross. I invite you to reflect too this Easter on God, his plans for us and the cross, the greatest love story in history. 

To know more visit Heaven 4 sure; The Message of The Gospel ; and Scripture Union

March 26 th is Purple Day

Purple Day is International Epilepsy Awareness Day!

Most of us are aware of the symptoms pf a 'grand mal' or 'tonic/chronic' seizures, but did 

you know that there have been over 40 different types of seizures identify? Someone might even experience and short absent seizure without you even noticing it. For other people living with seizure disorders their seizures can be much more distributive and inhibit some daily activities. For me its I experience small in convinces such as not being able to drive or maintain employment. However I am still able to follow my creative passions of writing, poetry and art. I am very active in my local community and currently involved in a leadership program that will better enable me to serve my local community into the future.  Epilepsy like any other disability should not prevent anyone from taking part in any aspect of community life.  The message of Purple Day is "People who experience seizures are ordinary people living everyday lives." On purple day we aim to blend in with  our community, by asking our family, friends and colleagues to ware purple. 

AlthoughI am seeking to make a statement about my ability as an artist on March 26th 2013 by the first public sale of my artwork to raise funds for Epilepsy Action Australia and there on going work to support people like me to participate in society without fear of judgement. Epilepsy Action Australia website has great resources  to educate people about different types of epilepsy, general first aid and helping those with seizure to track there seizure and identify they triggers. Heres a diagram to assist you to understand focal seizures.        

You can visit my are auction at Debbie's Purple Day Art Auction

or why not make a online donation on go fundraising page

PLEASE NOTE: ALL ART PIECES MUST BE PAID FOR BY ELECTRONIC PAYMENTS AND EACH BUYER IS RESPONSIBLE FOR POSTAGE COSTS! I WILL CONTACT EACH SUCCESSFUL BIDDER WITH PAYMENT AND POSTAGE ARRANGEMENTS. 

Please consider this when making your bid.

THANK YOU!

Sample Art Below

  

The National Disability Insurance Scheme Terms of Engagement

Terms of Engagements

The first game of the season kick off tonight, But I already feel like I played a full season and it round one of the finals.  Everything hinges on tonight’s game, its do or die. However as I cask an eye around the locker room, I see the faces of my team mates are glum.  On some there’s a look of despair and other are clouded in a seed of doubt. As team captain it my job to lead the team on to the field tonight with the belief they can win the grand finial at the end of season.  I take a deep breath, as I begin my first team speech of the season. Welcome to the 2013 season team NDIS . . .

New Game Home

In was only late last year we head rounds of applause as Julia Gildard introduce the National Disability Insurance Scheme into Federal Federal Parliament . We experienced a touch down and our followers in a seed of red march on Parliament House itself, you be forgiven for thinking we’d won the grand final.  Members of team NDIS momentarily forgot we had only won the preseason comp. The real competition kick off was still three months away and team Federal Election is about to march on the field as a major contender in the 2013 season.

Umpire introduces new rules

Yes a date for a trail of the NDIS had be set on five major playing fields across Australia, but the new season sees  a new major partner enter the political stadium for the first time and suddenly the rules of engagement  are under a cloud. In addition to this several key players are suspected as drug treats to the respect of the game and at the eleventh hours a major teams look set to be booted out of the competition before tonight’s kick off.

Meet the players

Its there any wonder why I see a look of despair on the faces of my team mates. The tone of emotions  changed, considerable during the preseason. The celebration of our preseason victory have sowed. Doubt and sarcasm are growing strong among the team, the smelt the sniff of victory too many times before to believe a revolution can take place. 

They suspect the promises of changes to the game in 2018 will only mean minor venue changes rather than a rewriting the rules of the game as being promise by the Australian Labor Goverment.  No one is sure, including me they have another season under the current game rules left in them and the light at the end of the turn grows dim.

What the current disability sector needs is tearing down to it grassroots, a total administration restructure along with new rules of engagement to see  real improvement in the lives of people with disabilities and the families across this nation.  However the present state play seems to cast a shadow of doubt over who will even be eligible to remain part of team NDIS come mid-season. With this seed of uncertainly clouding the team’s season, I shouldn’t be surprise at the atmosphere preceding tonight’s game.

Half my team have lost sight of the revolution occurring behind the goal posts, to them its the same old game under a different competition banner.  Bitter chocolate dressed up as sugar coated candy dancing on the sidelines just out of sight of the goals posts and the media’s refusal to highlight major changes in the game that I personal blame.

The highlights on the induction of the new rules for the current seasons have not been aired on commercial TV and nor advertising of new opportunities to public debate over the proposed legislation introduction.  The ink will be dry before the genera public realises it had been invited to make submission to the newest revolution to the disability sector since its introduction in the 1970’s.

Last week marked the 20th anniversary  of the Disability Discrimination Act in Australia, however  little has changed for many young Australians with a disability whose only accommodation choice are in aged care faculties and insurance of their right of entitlements as previous players have been swept away.  For me too many current players only have their eye on the ball their playing with, not their fellow competitors the talk of an even playing field does not extend past the 2013 season. Those proceeding them and future players and even those playing in other codes of the game are given no thought.  The ideals of being part of a team on extend to the photograph placed before their eyes.

 

Ending isolation 

Players still being placed in institutional care and respite day care centres, adult with a disability partaking in childcare like activities are not on their game agenda.  Their agenda may be getting out of their own homes, it’s a fair and justifiable fight, but a truly national games needs to give equal playing time and resources to each member on the field not just those who have some restricted access to the community arena already.  If this is people’s vision for the NDIS, then pack you bags on leave the team players to help all members be rewarded with a medal at the end of the season.  For its only if we enter tonight’s games playing for every other team member do with have hope of a grand finial victory in 2013.

Team Ipswich

So before you follow me onto the ground tonight, I am asking for 100% commitment to each member of our team, regardless on the personal circumstances.  If you’re not prepared for the rules changes before us then as they say on your bike.

Debbie Chilton

Post Note You can help shape our game

Darkness in Disability Care

Yesterday we celebrated the 20th anniversity of the Disability Act?  But for me at times yesterday I was thrown back in the ages where people with disabilities had few rights.  Yesterday I experienced what it is like to be disabled at the hands of a disability service as I was tired to my shower chair for my own safety.  And now nothing makes sense.

I can walk and my doctor is angry that my workers will not allow me to walk.  OMG! Heavens forbid its not safe to sit in a chair, because I have epilepsy. I sit here trying to convey the message that epilepsy is nothing more than a medical condition requiring medication. The last thing I want is to be wrapped up in cotton wool and my choices taken away because I might have a seizure and break another bone.

This kind of attitude is what Purple Day seeks to address. It is message is people with epilepsy are everyday people living everyday lives.  Someone having epilepsy is no excuse for them to be resistance. This can cause more harm.  The disabilities act gives us the same freedom as everyone in the community. I don't stop you driving in case a drives into.  Which by the way is more likely to happen than me breaking a bone during a  seizure.  

Life is full of risks, please don't deny me the right to take the risks! So purple on March 26th.