My Life, My Choices, embracing possibilities

One of my favorite quotes is, "We don't get to chose the cards we are dealt . . . Only how we play them!"

 Being dealt a card with the letters C.P on them is not a card I or any parent who chose. However around 17 million of us around the world are doing our best to play with that card in our hand.  It reminds me a bit of the card game 'old maid', not one wants to get caught with it in their hand.

Only we with C.P can not pass it on.  Despite many misconceptions in the community, Cerebral Palsy is a physical disability. Most people with C.P do not have an intellectual disability, including people who are non-verbal.  

My previously posts was Marelena's Story.  I meet Marlena at her graduation from Leaders For Tomorrow Program, in December. As I was embarking on my leadership program, Marlena was launching her journalism career and was a owner of two businesses, Marlena as do other participants continues to inspire me on my own journey. Forget the stars I think Marlena wants to be the first person with C.P to land on the moon or Mars.

As you get to know her it is easy to forget Marlena is non-verbal, she is a very 'vicious' person making her thought and opinions know on facebook and through facilitator communication. Sadly one of the leadership struggle we both face is a constant need to validate our 'voice'. To constantly reinforce the message that, Cerebral Palsy is a physical disorder affecting our muscle system and speech. It in not way impairs our intellectual conpasity both being university graduates. 

Having shared Julie's and Marlena's story, I thought I share something on how my family and now myself have chose to play the cards we were dealt! 

The first card was dealt to my father on the 10th September 1968, as both my mother and I fought for our lives, the three of us played well, both my mother and I survived. The next card was the CP card dealt around the age of 2.  A card that remains in our hands today.

Countless specialist have tired to hand our family other card, as we puzzled our way through lack of information and knowledge of the possibilities for my future.  There was no 'card' with a map.  Cards like retardation, dependent, institutionalization, wheelchair and welfare dependent. All cards we eventually manage to play and remove from our hands.

My oldest and dearest friend tells everyone, I was so smart I got kick out of school - (the special education system). I am so blessed to have a lifetime friend who's my # 1 fan.  I must add by this time I was walking unaided and had passed on my wheelchair bound card.  So my family and I continued to play our cards well despite the challengers. 

My parents then made the decision to pick up a card that refused to let my C.P define me or my life, I was handed the 'possibilities' card.  All things were possible until proven otherwise.  A few things like driving a motor bike and knitting were proven not to be possible for me.

Cards played along the way were, health and fitness. I was a very healthy and active child and participated in all aspects of family life including camping, hiking and fishing.  As you know I was no dunce and went on the gradate in 1991 with a Bachelor of Arts majoring in Behavioural Science.    I then worked for Student Life Australia as a Christian Outreach Youth Worker. Until other cards were dealt and took their toll.

A bout of glandar fever stole my health, ability to work and live independently.  It trigger epileptic seizures and depression. I took seven years for me to reclaim my independence and I still struggle with my health today.

In 1991 I again moved out of home and continue to build my writing career and life as a poet.  Along the way I written 4 books and co-authored another. Published numbers articles become the President at Community Access Traditional Services and Advocate for people with disabilities. 

Currently I am pursuing a visual arts career and arts worker.    Next week I return to study art and I am designing a visual artist Program for people living with disabilities and mental illness.

My name is Debbie Chilton, I am a artists, author, poet, advocate and leader for tomorrow.  CP continues to fail to define the person I am! 

Repost - Marlena's Story

Wow! I thought I have a spirit of get-up-and-go! I have tried to live my life determined that my disabilities would never define who I am and what I could achieve.  And in the main I have been fairly successfully, achieving all my mild stones goals. Like attending university, writing a book,  even living independently and now looking at making my art more publicly available.   However, my very limited understanding of what is possible has recently been challenged.

Sight Seeing in New York

This challenge came from one of the 2012 graduates’ of The Leaders for Tomorrow, “Wild Thing!” Marlena Katene, a young lady that obviously has no time to worry about how others may perceive her; preconceptions of what people with profound disabilities can achieve; what is safe or normal. Make no mistake this is a woman who knows her own mind and sets her own agenda.

Marlena Tackles Human Nature 

My first introduction to Marlena and her journalistic talents was on U-tube Marlena interviewing Rove . Marlena has big ambitions  in terms of her career goals,  such as being the next Molly Meldom, minus the hat of course. I must say given she is still a student  and has already has interviewed the likes of Rove, Snoope Dog & Wynter Gordon, Joel Parkinson, Ricky Martin, Delta Goodrem and the guys from Human Nature, she has already earned respect as a journalist in the entertainment industry and has a huge career ahead of her.

Marlena Chatting with Delta Goodrem

Outstanding achievements for any young woman of 22 years of age, yet astonishingly Marlena has little control over her vocal cords and needs to use her ipad to communication and the frustration the relying on technology to assist this process. However Marlena holds not fears and seems to be the kind of person to jumps in with two feet and worries about technical hitches later.

Yet her journalist interests are only one layer to the life this lady lives at full speed. Marlena is very entrepreneurial  in her outlook on the future and in not way content to sit back and wait for opportunities to come her way.  Currently she runs a jumping castle business on the Gold Coast.  It seems this amazing lady has a huge personality the draws people into a small team around her to get things done.  Not sure how much she pays her staff to lug these huge jumping castles round to birthday parties and markets every weekend. Rest assure Marlena Katene is one Australian with a disability who is not going to rely on your tax payer dollars to support her.

Marlen's latest addition to her castle kingdom.
Burliegh Bouncers
Jumping Castle Hire

While my dreams involve tackling Disability Awareness in Ipswich so people with all types of disabilities can have a voice in their choose life path Marlena is tackling the world head on and holding her head up high.  With people like Marlena beside me I am confident a world of social inclusion is not very far off.

The world is Marlena's playground and her journey just began . . . 

This is a re-post from December 2012 for World CP Day 02.10.13 Marlena is current travelling in Japan. She is in the final semester of her second degree in Journalism. 

World CP Day 02.10.13 is a chance for people with CP to embrace possibilities. . .  Though the sharing of information, advocacy and ideas.  You too can help change the world for voting for your favorite  helping make it a reality.

Julie's story

Hi, my name is Julie. I have Cerebral Palsy. This affects everyone differently. For me, it affects my legs. My brother Brian also has Cerebral Palsy.

I used to live in my own Queensland Housing unit in Ipswich. It was a small unit. The neighbours were nosey. This made me upset. SO I moved to current home about two years ago.

Then FSG- which stands for Freedom Social Justice and Growth- asked me if I would like to join their RSP program. RSP- Resident Support Program is a program supports me to manage my personal care and to link in with my local community. This helps me to shower because I feel safer knowing there is someone close by in case I fall.

 I enjoy getting out and about with staff and groups of people. I have joined into the craft group that is run for FSG participants and I have made new friends and enjoy talking with FSG staff too. My favourite outing was to the park when we had pizza together.

I moved across to the TIDES program for a while. TIDES stands for Towards Inner Discovery Enabling Self-hood and is a short to medium term program that runs for a maximum of 12 months. It is a transitional program that helps people to become more self-sufficient. I now go to work at FSG on a Thursday. I volunteer my time in the TASTE program- Taking A Step Towards Employment- I work in the op-shop and Greenshop, sorting donations and helping to package the products that we supply to other offices and sites in the Ipswich area. I like going to work, and my goal is to gain paid employment in the future.

The RSP program has helped me to do things in the community that I want and need to do. This helps me to not feel isolated. This makes me feel good. I enjoy going to the office to learn how to cook and to do painting. I meet new people and learn new things.

My children come and visit me at Christine Court. Their names are Pamela, Katrina and Jason. Pamela lives in Toowoomba. Katrina lives in Ipswich and Jason lives at Redcliffe.

Today is World CP  Day a day to share ideas on how to improve the lives of the 17 million people around the world with CP. You can read these ideas at World CP Day Website.

Exploring Possibilities

Imagine . . .

If you could help change the world, to make society a more inclusive world for people with disabilities. This October you have the opportunity to join others around the world to bring change to those living with disability, through World CP Day 02.10.13

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A global exchange of ideas to benefit the 17 million people around the world living with CP. In Australia it is estimated Every 18 hours a child is born with Cerebral Palsy or  CP. 

There are a number of identified cause than may lead to cerebral palsy but no known cure's for the five different types of C.P.  The term Cerebral Palsy, is actually a general term for a number of brain disorders. 

It is a physical disability  that primarily affects the skeletal system and  muscles control. However these symptoms are caused by damage to the developing brain. Put into its most simple terms C.P. is the result of brain damage caused in the womb,  birth or firsts months of life;  and it can mirror thy symptoms of acquired brain injury in adults. 

    

How that presents in an individual is dependent on where the damage to the brain occurs and the extent for cell function that is loss.  The above diagram illustrates some of the functions of the brain and how damage in that area may affect the individual. 

Cerebral Palsy may be characterized by the following. 

• tightness of the muscles and/or muscle spasms
• involuntarily movements    
• difficulties with motor skills, effecting the ability to walk, balance, move limbs, hand eye coordination and speech. 
• perception and sensory  difficulties 

Many people living with C.P have secondary disability related to their cerebral palsy. These are often confused by the physical disability itself.  Those with C.P. may experience hearing loss, low vision, epilepsy and intellectual ability, in the same way an acquired brain injury.  The common belief CP and intellectual disabilities go hand in hand is a myths.  The majority of people with  do not have an intellectual disability something the urgently needs correctly, especially in the medical profession. 

  

I sometimes tell people I have an acquired brain injury the happen at birth because the results are the same.  CP can affect one, two or all four limbs.

Living with CP brings many challenges including the barriers that myths create. Each year WORLD CP DAY seeks to address some of these. Through advocacy, invention, technology and the sharing of ideas . 

October is your opportunity to be involved in the sharing and development of these ideas. You can SHARE, READ, VOTE  OR OFFER TO INVENT AND DEVELOP THESE IDEAS by visiting  website.

Tomorrow I have a guess blogger who will share her story and will repost Marlene's story and u-tube clip to raise awareness, you can help raise awareness by sharing this posts with others. 

Debbie   

October 2nd is World CP Day!

02.10.13

World CP Day is not another awareness campaign. WORLD CP DAY  is a movement to change the world to make it a better place for the millions of people living with CP around the world.  People born with CP are some of the most disadvantage people, especial in the third world.  In the third world being born with disability often brings shame to the family.  Many children are left to die or place in orphanages.

WORLD CP DAY is in essence a sharing of ideas among people with CP across the world with people encourage to design inventions and technologies that will improve the lives of others with CP. With the top ideas awarded money to develop their ideas and make them a reality.  You can view the ideas from 2013 on the website.

I think as an artists I world love to see an easel that could move at the push of the button and the artist could position the canvas where the want. As an artist living with CP it is frustrating to ask someone to do what my hands won't.  I can't imagine how frustrating that must be for an artist who happens to be non-verbal.  From experience paint and ipads to communicate don't mix well.

Artists Living with Disability
Disability Action Week 2013

Those living with CP are often creative out of necessity. I quiet cleaver at bamboozling others by my tricks to perform everyday tasks.  We don't get to choose what cards we are deal, only how we play them out.  The people involved in World CP Day certainly play their cards well!

You to can help change the world on October 2nd 2013. why going to the WORLD CP DAY  website and voting for your favorite idea during October.         

So put you hand up for ability!