Is the sky blue?

Of course well all have people is our lives who are opinionated and love an argument for argument sake. I believes there are times when I am being supported by a support and the lack of respect for client choice has to nothing do with me having a disability or even  me!  The support worker may choose to have the very same argument with their own mother.  Sometimes even the topic of discussion is irreverent and we may be arguing over the ‘sky being blue’.

Roses are red!

Violates are blue!

Sugar is sweet!

And so are you!

Fact or fiction- it is true that some roses are red! But these are in the minority.  If I have a red rose in my hand then you could argue that that ‘rose is red’, but if was stand holding a blue rose blue rose in my hand . . . then reciting these very famous lines, may sound like fiction.

The types of workers will stand asking for justification for a choice I make and even when I deliver a reasonable defence for my choice they will continue to argue the point, just to be right and almost like score points.

I wonder if these people see life as so black and white they would argue that the sky is blue.  Debbie, I simply stating a fact that the sky is blue and on that particular day the sky might reflect a picture card blue sky, like just as I am standing and holding at red rose.  At that time the person may simply be stating a fact.

But to play devil’s advocate I going to argue the statement that the sky is blue is an opinion. The blue colour we can both see at the moment in time is a reflection as a result of weather condition. The sky actually appears many different colours, depending on the weather and time of day.  It may appear grey or even green is there’s a storm on the horizon, and the a whole mirror of different colours at sunrise and sunset. 

Yet for some reason there are people who would want to argue over whether or not the sky is blue.  Being a phalmatic person at the end of the day argument  the worker will get one of two reactions whatever (like real at the end  of the day who cares!) or I will blow a raspberry. Depending if I am in a childish or adolesces like mood.

To me some battles like arguing the appearance of colour of the sky is a mere reflection of atmospheric conditions is  not worth picking a fight over.  Been there! Done that! . . . And decided it’s a waste of energy and support time.

Like the time I was in Crazy Clarks (one of those $2 shops) I found myself needing to justify to my support worker a $2 purchase as if it was a major purchase in my life and the defence I presented was deemed weak.  Needless to say we never had that type of argument or any argument again.  I made the purchase or one pink folder and one purple folder and left at the end the day if I was even being challenged by a worker over the right to buy 2 purple folders valued at $2 each. That support worker was never going to understand client choice and I asked for the worker to be removed from my roster. Some people will argue of every little thing.  Whatever . . . I haven’t got that time to waste when I have 4 hrs support per week.

The commanding officer doesn’t choose to fight diversion, unless of course the form part of his battle plans. Arguing over the colour of folder on that day was not as import of the taste and the aroma a purchase of a coffee was about to bring.  The colour of the folder was an unnecessary diversion in my day.

On that note I am yet to find a support worker who has argued with me over a request to stop and have a coffee, often rather choosing to indulge in a coffee with me. Which is a good thing, when you choose to be a coffee addict.

Just do me a favour next time you feel like arguing over the colour of the sky or a folder let me know so I can go hide out in a coffee shop instead!

Lifestyle Chocolates

Choosing your chocolate

Lifestyle choices and the big 3!

Diet, exercise (movement) and lifestyle balance

There are times in our lives when making choices requires a real balancing act.  This is certainly true is my major lifestyles choices relating to my health and wellbeing.  Areas around diet, exercise and lifestyle balances.  We all are forced to make choices in these areas I guess some of us are more deliberately in making those choices.

Like all choices what we eat, when we eat, and how we eat has conquences,  whether we choose to eat randomly what we feel like eating when we feel like eating or we chose to follow the latest fad diet.  “we are in the main what we eat and how much we eat of it.”

As a person living with major mobility challenges, what I choose to eat is central to my overall wellbeing.  In addition to my challenges with mobility and how those change as I age, I have a number of other chronic health issues to consider when deciding what my weekly food intake might look like.

Like many people approaching middle age my weight has become an issue and the battle of the bugle in earnest.  It just the size or appearance of the bugle that differs for each of us. So for me I have decided the appearance of my bugle, at my age, for me weight give my ongoing mobility issues and associated impact on my health is ‘of concern’.  Others in my position may not share this concern, but I have chosen it to be an issue.

Just as I shared a few days a go someone else around my age might chose to go to the gym everyday before or after work, in the main controlling my food intake is how I tackle my weight use.  For me this isn’t a magic number when I stand on the scales, but my waste line.  Exactly hard are my jeans becoming to do up in the morning.  Of course I could choose to keep buying a larger size.  However for every centimetre my wrist line grows the harder it is to tie-up my shoes,  (yes! Although it is a struggle it is still important to me). Walking, transferring and getting in and go out the car.

Even though I can still walk due to fatigue and pain levels in the main I choose to use my electric power wheelchair while carrying out my daily lifestyle activities. Although many disagree with my choice to use my chair at home, I believe the energy I save allows my to continue to live independently and work form home.

Just as some don’t agree with my mobility choice many can not understand my choice to work and interact in the community despite the many challenges my disability bring to my daily life.  My choices to choose to use a wheelchair even though with difficulty I can still walk, like any lifestyle choice comes with some risks and high emotional costs. 

A daily struggle is to find a balance in my activity level and many days, due to fatigue, pain levels and allergies I seem to get it wrong.  While I struggle to balance out my lifestyle and the activities Associated with those choice life never seems to pan out the way we planned or hope.

In achieving my lifestyle balance I choose to make deliberate choices to ‘move’  rather than a exercise routine such as going to the gym. My ‘movement’ philopchies may be the equalivant of someone without a disability choosing to take the stairs instead of the lift. So choosing tie my own shoe laces rather than asking my support worker is a deliberate choice in movement, umm! Now to convince them to let me dress myself.  That is not their job to dress me, but enable me to live an independent lifestyle.  Oh that would be dependant on them reading my individualised support plan wouldn’t it?

In the same way I can my TV channel the old fashion way.  Without the remote control that some people seem to have glued to there hands.  An able body person my chose a deliberate movement plan by making 10 000 steps a day.  I do not subscribe to any one size fits all approach to anything involving a healthily lifestyle balance. As we are all individuals we need to choose or not choose the right lifestyle choices for ourselves. Someone choosing only to eat Macers still involves choices, even though for most of us it seems to be a lazy choice.

In the same way to use my wheelchair at home will seem a lazy choice. In making my choice I am aware that that will result in muscle waste.  While you can see the impact on my arms and legs you can not see its impact on my heart, lung and bowel. The health of these organs more import to me than continuing to walk is pain.  To exercise these muscles I have a specialized program.  But because I not out power walking the streets at 5 am in the morning  some people will view me as lazy and that’s their choice too make.

To counteract my choice to mobilized in my wheelchair a diet high in fibre and low in fat is important to me.  So you won’t find to many packet of biscuit or cakes being baked in my house.  The chocolates I choose are full of Spanish, carrots, celery, bananas, and strawberry centres and probable made on carrtoine rather than coca. Just don’t deny me my cup of coffee!

So my guess is when you open the chocolate box your selections will look very differ to mine.  I just glad these lots of options in the box to chose from

   

On Second thought

Honestly I didn’t mean to sound rude,

There seems be many people telling me what to do,

Only one Indianan with so many chiefs,

The sudden invasion is wearing me beyond belief.

It’s not that I don’t appreciate you help,

For I know that there’s many things I can’t do myself,

It’s not really the fact you’re touching my things,

Rather the method and madness your help brings.

It’s lack of respect that you often show,

As you tidy my table and put away my dough,

The way you toss things about show you don’t care,

That hurts my feelings and causes despair.

They may look like simply only pencils to you,

And old Crayons with some chalk in there too,

But as you standing there tossing them in a box,

There usefulness and value are about to be lost.

You see these are the tools of my trade,

Each pencil has a place where in needs to be laid,

The don’t take kindly to being just toss about,

There life is soon shorten with each shattering  bounce.

Just as oils aren’t oils, my pastels are just pastels,

They now come in pencils, oils and chalks,

Though they many look at like they don’t get along,

My oil pastels cause my chalks pastels to decay.

The pictures you stack are ooee and gluey

And once they are set you’ve created a glue,

I hust look with them with a tear in my eye,

Hours of work I place in the bin to say good bye.

So I mean no disrespect for your help you see,

My requests come both with rhyme and reason,  

When  you act in such disrespectful ways,

Sometimes don’t touch is easier to say.

My life as a artist may seem different to yours,

I don’t quite understand the distress my mess seems to cause,

Nor your insistence my house should look like yours,

So I ask as you touch my artwork be aware the damage you could cause.

Debbie Chilton © Copyright 2013

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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