House Rules By Choice!

A little bit of a change in pace today, as I continue to write about the many lifestyle choices, I try to make in my life if it wasn't for the daily space invades.

Last night one of my support workers attended this first performance poetry competition "Page to Stage!" of the Ipswich Poetry Feast.  My support worker has had little contact with this side of Ipswich's culture, despite many times being a captive audience of my poetry scribbles. As usual I come away inspired to put my poet's fingers to the keys on my computer keyboard only this time my support workers got in on the act! So here's what we have to say to other invades of my home.

House Rules

I know house rules suck,

But we’re talking about stuff!

My house, my way,

So I ask don’t touch,

In my house this means you!

Maybe I should hang a sign,

Creative genus at work,

Pencils the lie every which way,

But I ask you not to touch,

In my house this means you!

Sketches lie here and there,

Often with no floor to spare,

Yeah, some lying incomplete,

 But I ask you not to touch,

In my house this means you!

Oil pastels that roll onto the floor,

My eyes seem to miss,

Becoming taped under my wheels,

But I ask you not to touch,

In my house this means you!

My paint table often wobbles,

Paint pallets fly into the air,

Then goes splat on the floor,

But I ask you not to touch,

In my house this means you!

Then there’s my note pads,

With lines of unfinished poems,

And lose pages that fall out,

But I ask you not to touch,

In my house this means you!

Not all my sketches are on pictures,

Many are character traits of

Characters that live in my head.

These pages you must not touch.

In my house this means you!

Which brings me to my offices

And the stack of half written manuscripts,

That sit on my desk and spill onto the floor,

These pages you must not touch.

In my house this means you!

Didn’t know about these house rules?

That hang on my wall for you to read,

Do not enter my office,

Lots of things I don’t want you to touch,

In my house this means you!

Documents that are confidential,

Not to be read by your preying eyes,

Please keep out of office,

Lots of things I don’t want you to touch,

In my house this means you!

Let me see have we talked about my kitchen,

You seem often to want to rearrange,

There are many things I can’t fine,

Lots of things I don’t want you to touch,

In my house this means you!

You may not like my kitchen design

But it was created with only me in mind,

Why must my mugs be grouped?

Lots of things I don’t want you to touch,

In my house this means you!

Look I have this thing about my pantry,

I like to see a certain way so glass jars don’t break,

Please don’t place them at the front,

Things in the pantry don’t touch,

In my house this means you!

Yeah, I get to you my rules are a pain,

But these are my rules all the same,

Its my house, my way,

So I ask don’t touch,

In my house this means you!

Debbie Chilton and Shannon Jones, © Copyright, 2013.

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Let's talk choice!

Over the last few days I've been sharing a lot about me feelings around lack of true choice in my life and how others in my life may respect or disrespect these choices. And ultimately that is their choice. 

However because I have CP and epilepsy legally the law said for my safety and the safety of others I must be seizure free for two years before I can drive.  At this point some of my friends are horrified that the thought of driving would enter my head.

Sorry to disappoint you guys but as I close my eyes at night my dreams are filled with jumping in a car, usually and certain old blue ford once owned by a friend for some strange reason that continuously mystifies me. 

I reason the psychological makings of my mind are forever frustrate my the lack of freedom and often feeling the lack of freedom to make my own choices about the simplest things like how I want my toast cooked and the right not to have butter or margarine under my cheese, or 'fat on fat', as I tell support workers.

Legally I am forbidden from taking the keys of my parents car and driving it to the Gold Coast. That is of course assuming in backing it out the drive way, I didn't let go of the brake and loss control landing in the front door of the nieghbouries across the road or was pulled up by the first police car I pass and taking into custody for driving with out a licensed.  I think we can all think of worst sernioes  so will stop this dream right here.

As I do make a choice to obey, the laws determined by the various levels of the governments in Australia and thus far have little experience of the justice system.  As I been endeavoring to illustrated over the last few days, our choices large or small have conquencies, whether I make them or the Prime Minister makes them on our behalf. Whatever we choose we must the live with the result of those choices.

Our nightly news headlines are filled with examples of the results of some of the choices people make. Sadly in making these choices, the lives of others are tragically impacted with devastating results. Often as was the case in Boston this week these stories are the result of an individuals choice to not act within the laws of their country for reasons you and I will never comprehend.

However not all the stories that make the nightly news bulletins are the result of criminal acts or wrong doing. Sadly even the right choices or the choices we make that are lawful can meet with tragedy. There are times we choose to fly to our holiday destinations and for reasons beyond out human comprehensions the plane crashes and we lose love ones forever.

When trying to explain my right to choice to new support workers I often use the illustrations involving of the family or company car. 

My game begins something like this . . .

'Did you drive to work today?'

Confused they answer of course I did!' looking at me very strangely. What can driving to work have to do with making choices. 'Am I driving you to Woolies today?'

'Yes you are I am choosing to do my shopping at Woolworth today. However my question is did you choose to drive to work today?'

'Yes I did, I knew you were planning to go shopping at Woolies today.'

'I know last night we decided to do the shopping today. But you still made THE CHOICE to drive to work, as you left the house this morning.

At this point the worker is starting to get frustrated and Debbie you're point being? and then the defense, 'Well how else was I going to get to work and take you shopping?  What other choice did I have?

The worker here has a valid point.  There are no buses or trains that run directly to my house, the office or her next client.  In our daily lives we often feel we make the only choice we can at that time. In the same way my worker feels it it her only choice to drive to work, I too feel my only transport choice is a maxi taxi and allowing for incredible waiting delays.  We all feel there are times in our lives when we make the best choices we can under the cirmustances. However even when we feel we are making the only choice we can, our choices are choices all the same.

My support worker could of chosen not to come to work, and making that choice results in the conquences of loss of income for her and might mean the is no other support workers able to take me shopping that day.  Hardly decisions that are going to change the world, but choices with results all the same.

So on this particular day, my support worker, indeed chose to drive to work so I could do my shopping at Woolworth. Having now establish the support worker chose to drive to work that morning, I play devil's advocate.

'Where do more fatalities occur than anywhere else?

She replies, 'close to home'

'While driving on the road?' I ask.

'Yes, and you're point is?, looking at me somewhat down funded again.  

'You made the choice to drive to work today knowing there was a potential to have a car accident and having acknowledge knowing the risks, you and I are about to choice to take that same risk to drive to Woolworth in order to do my shopping.'

'Yes' and sometimes the penny drops and sometimes it doesn't. Life requires us to make choice to get out of bed in morning or to roll over and turn the alarm clock off.  Sure we might not have a job the next day if we make that choice, but while we choose to continue to live (because others have made a choice not to live.) we are forced to make a series of choices that will impact our lives and the lives of those around. 

We do not get to control life.  The results of our choices are not always what we expect and at times when our love ones are taken from us in car accidents we don't like the results.  Yet in the main most of us chose to drive or be a passenger in a car with the full knowledge of the results no being what we anticipate at the end of the day. 

As Forest Junck said, "Life is like a box of chocolates!"  We can chose the chocolate we want from the box but we don't always like the centers inside.

While my epilepsy makes illegal for me to drive a car.  There is nothing illegal about choosing to live alone. Yet often that decision meets with the same reaction.  Its too dangerous for you to live on my own. I like millions of people on this planet make a choice based on a calculated risk that an injury or death may result if I have a seizure.  I have made a choice not to break the law and drive a car and I have made a choice to live on own. 

The conquenices of both choices is potentially fatal. However statistics tell us I am more likely to die as a result of my decision to be a passenger in a car, than a seizure in my own home. Yet only the second of these two choices is faced with opposition.

Yes!  Life is like a box of chocolates often we don't like the taste as we bite inside and then its too late. As I am about to make my next selection, I take a calculated risk that you and I may not like  the taste inside. But I am going to take a bite anyway on the off chance I might really enjoy it.

Let me know if you like to chose your own chocolate or you want me to choose for you?  

  

Chasing Bees

"Have you seen it?"

"I mean the bee that seems to be trapped in this continuous cycle around my head? Bloody annoying thing that won't bugger off! Is it worth chasing the bees or should I give up and take up bee keeping and collect the honey instead?"

As a client of any agency that provides me with support, I have a care plan.  Each care plan is individualize to my specific needs. I am blessed to have a community link officer and service coordinators that recognized my abilities and encourage my autonomy in writing my own support goals and care plans.

Some even joke, you're the writer so write your own support plan. To which I respond, trying to get out for work again!  You like this deal, its one less plan to write."

Then we burst into laughter and I write my own support plan.  Many old school paid careers and support workers get the nose out of joint because this not your job and what right do I have to decide my own support needs. That's what case management is for.  

The are in tithers that I be allowed to case manage my own affairs. The fact I don even have a case manager or social worker, because I do need one is not know to them.  Theses workers have a one-size fits all approach to supporting people with disabilities.  Which is what I label, a medical approach to providing support.  Sadly I have even been referred to as a patient!

As I said yesterday all too often, the support workers who take this approach are myself appointed supper-heroes here to rescue me from all harm, despite and care plan that has been activated by a support agency. Paperwork is viewed as nothing more than red-taped produce by the Department of Communities.  The careful individualization planing support goals and meeting unique needs is simply dismissed as erotic by the department to keep the powers of bee happy.

Once these types of workers enter my home, the bees swam and take control as my support and care plans are tossed  by my personal saviours in the bin, unread being judged as irrelevant to my needs. The bees, the bees! I cry, why don't they too see the bees that gather in my home.

The breed of bees today are called medications. The concept or notion that medications are legally required come into play and my saviours at simple a law in enforcement agency to administered my sentence imposed by a judge known as my GP. 

A judge the many workers view as incorrect and far too progressive in her approach to my health care.  How dare a doctor offered medication advice, options and choice.  What happen to the good old days when medication were simply prescribed.  You don't mean to say, like people with disabilities patients too have a right to choice and doctors are not longer dictators the were once viewed as.

As I said yesterday our choices have conqurences, giving people with disabilities real autonomy runs the risk of clients or patients making bad choices.  Like many everyday make the choice to take up smoking.  When are these self appointed saviours now.  Look, here these people are about to caused the own early deaths any your worried if I have a seizure if I don't take my medication? Come on don't just let the bees into my home, share them with the smokers too.

Ooops! I forgot you're one of the smokers, who has a right too choice because you don't have a disability.

The question remains to chase bees or take up bee keeping? Let me know what you think.

Forced Apologies Made By Debbie

The line of defence

As I begun to write my post today I looked up the word “justification”, thinking the meaning would be to give reason or explanation for an act or decision. I found that the word “apology” is a synonym for word “justification”.  This to me implies a decision or choice ‘is’ incorrect unless I can produce fact or reason for the choices I make.

Our daily lives are full with choices, in fact I often joke how boring life would be if we all make the same choices. Our choices are what make us individual and unique. In many ways our lives are driven by choice.

When my alarm goes off at 6:30 in the morning I am forced to make my first choice of the day.  I can chose to hit the snooze button and roll over for another 10 minutes until my alarm again reminds me that I planned to get up and start my day at this time, I chose what time I wanted to be up or acknowledge the choice I made the night before and get up.  Often this decision is driven by the powerful image of a mug of hot coffee and memory of its smell. I like to have my first cup of coffee of the day alone before my home is invaded by the necessary presence of a support worker.

I could however choose not to set my alarm and not to get to until my support worker knocks at my door and their are days when for reasons known only to me I make that choice to forgo the aroma of that first cup of coffee and to catch the news headlines before I rise and shine.  The odd support worker has threaten to throw stones at my window, but as yet none of them have chosen that option.

In the main that is because I am motivated to get up for a hot shower, especially on a cold winters morning.  I may choose a long hot shower over the waking thought of the aroma of my cup of coffee. Our choices are driven by our motivation, some of these at rational, others may be irrational or selfish. As we make daily choices however small they are: like to sleep in our choices will have conqueneces .  The result of my not setting my alarm is the lost of a few precious monuments in the morning to gather my thoughts, catch the news headlines or reflect and pray.

Few people in my life question these few choices I make as I start my day even if it is different to theirs.  Others many choose to start the day with water to detox and a dash to the gym. Just as they respect my choice for a coffee, I too respect the choice to care for their bodies.

Our choices can at times impact the lives of those around us.  Living a alone these early morning choices do not affect others.  But then sooner or later that knock on the door comes and if I chose to open the door, then my choices begin to affect others.

The front door opens and so my choices enter the view of those who I share my existence with on this plant.  If I chosen to strip my cloths off as I make my way down the bedroom the night before and wheel over them in the morning in the desperate quest for the first cup of coffee before that intruding knock comes and others invade my home and space, then they too are forced to step over my cloths and find where I am hiding, which is usually laughing with the Sunrise gang and JT’s latest prank, unless of course I have chosen not to get up and I decide to ask for a cup of coffee.

Unless I have a very understanding worker or I very unwell, the coffee is place on the table and those items of clothing the worker was forced to step over are gathered up and place in the wash and my supper dishes are cleared away.

The worker may chose to have a dig at me . . . What time did you boyfriend leave last night or was it at 10 to seven this morning? So its 7:15 and the please explain questions start.  For the next few hours there is no privacy and I may be asked to defend choices I make. Usually it’s about my decision about whether or not I want breakfast and the answer ‘nothing’ or ‘coffee’ meet with a disappointing look or a growl. You should eat breakfast . . . You have tablets to take . . . You’ll feel better if you eat. How about toast?

Hang on what happen to client choice? That is usually meet with the I have a duty of care line and if you have a seizure I will ‘feel’ responsible!

The defence that thousands of people have made or are about to make the very same choice in not accepted as justification and the fact the have just had a ice coffee  for breakfast escapes them. Because a support work perceives they are responsible for my welfare in this area, I become defenceless and not justification for my decision exists and a your right apology is usually forthcoming and before 7:30 am the first line of defence is crossed and my daily battle to defend my home and lifestyle begins.  The first of my self appointed saviours for the day has arrived to rescue from the process of self destruction all because I made a decision that it had become safer to have someone supervise my show in case I fall or have a seizure.

It is then that the true invasion begins and most staff insist it is their job to was, dry and dress me even though I perfectly capable of doing it myself again the fact that there’s documentation to support my defence is tossed of court, because that’s how they do personal care and that’s their definition and I am left with the choice to remain defensive or apologize for my quest of choice and right to independence. Which to many in the disability support system is a crime within itself.

Before 8 am the need to mount defence seems futile battle fatigue begin and then their shift ends and I left to fend unprotected until evening shift begins at 5pm and I am meet with disapproval as I am covered and paint or pastels and I committed my daily crime of using the living room as an art studio and the crime sense remains.  Having no recourse or opportunity for reasoning it is thrown it to boxes and pack neatly away.  The table is polish and a fresh table cloth applied so we can play ladies and have a coffee together.

I shake my head, why can’t I get paid to drink someone else coffee. Instead I am left labelled disable without the right to defence and a forced apology is followed. Of course you can drink my coffee not defence needed here!

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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.