2019 World CP Day 'An Ordinary Life'

WORLD CP DAY OCTOBER 6TH

Like so many disabilities Cerebral Palsy is misunderstood.  The movements of someone with CP are consistent with someone who suffers a brain injury or stroke.  These impairments are a result of damage to the brain due to loss of oxygen.  CP is a lifelong disability, marked by loss of brain function in the early years. 

It may surprise you that Cerebral Palsy is a physical disability that in a small percentage of individuals is accompanied by an intellectual impairment.  CP covers a wide range of loss in body functions, and thus the appearance of individuals is determined by which area of the brain cell function is lost. 

I AM 1 IN 1 BILLION

World CP Day seeks to build community knowledge on the true facts around one of the worlds most common disabilities.  I AM ONE IN 1 BILLION people who are diagnosed with CP.  But I am so much more than my diagnoses.  Loss in brain function can affect the entire body or be restricted to one side of the body; or the upper or lower body.

I am a quadriplegic with some loss in function to all areas of my body and my speech is also impaired, fortunately my hearing, sight and intellectual function escaped impairment.  World CP Day is marked by individuals and families sharing their individual journeys and then connecting on social media to give the world a better picture of CP. On October 6 I will be in IPSWICH, QUEENSLAND, AUSTRALIA and this in my story.   

I AM HERE AND THIS IS MY STORY

DEBBIE CHILTON

ARTISTS, POET AND WRITER

IPSWICH, QUEENSAND, AUSTRALIA

In so many ways I live an ordinary life, yet it is also extraordinary.  From the age of eight I attended a local school and went on to graduate from university. After that I worked as a youth worker, until illness interrupted my life.  Prior to this I would say I was aware of my disability, but it didn’t impact my life.  Uni life had somewhat separated from society and I was just another student on campus. Living, partying and sometimes studying, thus was my ordinary life. 

What I refer to as my extraordinary life began when I commenced publishing my poetry and was a freelance writer for a Sydney based publishing company. During this period, I was involved in church ministry and the Ipswich Poetry Feast, and other committees.  At this time my disability appeared to be ‘a problem’. As an accomplished public speaker, I was taken back when people started to raise opposition to me speaking in public and suggested that it wasn’t appropriate. 

The consensus was that the pearls of wisdom in my written work, were lost when I spoke them.  For me this was a societal problem not my disability.   My speech is no different to struggling to speak to someone for whom English is the second language, as a society we have lost patience with others and everyone is in a hurry to be somewhere, including me.  I was myself confused and confronted by a disability I have lived with for 35 years.  

After self-publishing a children’s book, a life of book launches, festivals and workshop presentations terrified me.  By then I also had a seizures due to a brain tumor. Even for me climbing the hurdles of my disability and writing was not worth the rewards.  Somehow publishing a book that flopped ticked for me that bucket list item.  Yet I have half-a-dozen incomplete manuscripts sitting in the bottom drawer.  Well .  .  .   Never say never! 

For many years I worked unpaid in the disability sector, in Australia people with disabilities face discrimination in employment.  While I understand my own predicament (living with uncontrolled seizures), I don’t understand the lack of willingness of employers to employ people with disabilities.  I am extraordinary in relation to accepting work without payment, and a community you will never value my training, skills or experience. 

Transformations Art Exhibition 

Gresser Gallery Brisbane

Opening Night

In 2013 I discovered my true passion as an artist.  ‘Let me talk art . . .’ people said I would come alive. It never occurred to my support service to usher me into a support art studio.  They fully encouraged me to work as an independent artist.  Naturally there was opposition and protest I could not compete against able bodied peers.  I am extraordinary as I backed my ability to be a professional artist and found when my work was presented with other professionals some people chose to buy my work. 

I will never make a living selling artwork, but I have found myself and my community, in which I am a peer and very much a leader. I now live in a community that values my life experience and skills.  I am now being paid when I am engaged as an arts community leader. I would like to think I am extraordinary because of my resilience and determination to live the lifestyle of my artistic peers. 

We do not get to choose the cards we are dealt, only how we play them.

I hope I am playing extraordinarily well.