Adventure All The Way!

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 . . . 

I believe in tomorrows becoming todays. However Marlena my friend I am still not coming skydiving with you next week!  

Leadership Dreams

In December I was fortunate enough to join the Leaders for Tomorrow Program. The program is funding by the federal government. In my understanding it is a prequel to the NDIS. The program is about support people with a disability to embark in leadership roles in sport, arts, culture, employment and government to name a few of the options. 

I  am really excited as I started my leadership dreamings and exploring some goals I like to take a stab at in 2013 and beyond.

Leadership Retreat December 2012

My Leadership Dreams

My leadership dreams center around full social inclusion for people with a disability in the Ipswich region. In my travels I meet many people with a disability who I think could help shape Ipswich into a great city for people to live, work and play, however aren’t given the opportunity to do so. During 2013 I want to gain skills to enable me to encourage other people with disabilities to be more active in our community, workplace and decision making processes.

Not side by side, where people with disabilities have an opportunity to shape their futures, rather where people with disabilities work with others in the community to influence the future directions of this great city.

Big dream huh? That’s just what they are dreams rather than goals. However, while my local community is my target, eventually there’ll be 200 leaders with a disability across Australia working towards similar goals. 

My goals span over a 10 year period, so you’ll be happy to know, I’m not planning to achieve this in 2013! Currently I have 4 goals I wanting to work towards.  Some goals will be completed by 2014 but most won’t.

  

My Leadership Goals

I am hoping my passion for the ‘arts’ will take center stage in 2013, as I work towards achieving my goals! Including working towards my own art exhibition in 2014!

2.   An art retreat to train artists with a disability in the West Morten Area in their area of arts interest.

3.   Working towards Disability Awareness in Ipswich city.

4.   Training and mentoring people with a disability who seek to engage in leadership positions which  will enable them to help shape the future of this region.

While my goals centew around working with people with disabilities in 2013, my dream is this will launch then into main stream community involvements through their own individual interests, whether the be sporting, leisure, the arts, leadership in the workplace, education, advocacy roles, community roles or political.

Of course a large part of my dream is dependent on the introduction of the NDIS.  So as part of my new role is  assisting with Disability Awareness in the Blair.

Looking forward to sharing my leadership journey through out the year.

Madman or Victim – Where is the love?

On December 14, 28 people died in the small town. Newtown, Connecticut. However on social media sites such as facebook and twitter the focus has been on the faces of 20 school children who went to school happy and who never return home.  Other memorials recall the heroic acts of the six teachers were gunned down in there attempts to save the lives of their students. There are a few who included the mother, of thus man who took 27 lives using three of her four guns.  Only the odd tweet and posts remember a young man, who was hurting so bad that the only way he felt he could express his hurt was to take the lives of 27 people before turning the gun on himself.  He was so angry that taking his own life was no enough.

As a community and perhaps humanity begins to look for clues and answers of how to stop these mass killings from occurring, the truth is we will never know why or fully understand why this man, choose  this day, at this time to take 27 lives with him to the other side of life.

While thousands are blaming gun laws and other blogs are debating who is a good person and ‘what is a bad person’.  Deciding the children are angels in heaven and the ‘bad man’ has gone to hell. The real question is how did society fail this man so badly that he killed 27 innocent people? It is this thought that leads me personally to label the man the 28^th victim.

Was this the action of a madman? I am not sure as I have not seen him as a patient for psychological analysis. However one would be hard pressed to say these were the actions of someone with a sound mind.

Rather the events of Dec 14 were planned by a young man full of pain, hurt and anger. The question is not why he did this. I doubt there will be a logical answer. But what were the cirmstances that lead to this powerful display of violence? I like many can’t help the questions my mind has asked since the shootings? Why, was he hurting? Who hurt him and how?  How many times was he hurt?  Was it one person or was he abused over many years? What was his mother like? Why, was she a gun collector? Did he hate his mother? If so, why did he hate his mother? Was he jealous of the school children?  Did he wish he wasn’t home school? Where is his father? Did he blame his mother for letting someone hurt him?  All questions to which we will never for certain know the answers.

Was he a ‘madman’ or just a ‘bad man’, as others have suggested.  Being so young some may might be tempted to ask if this young man was just ‘born evil’. As a Christian and a Behavioural Scientist I do not believe a person is born ‘good’ or ‘evil’ or just plain bad.  The bible tells us That all have sinned and fall short of the glory of God.

Daniel Scott whose daughter died in the Columbine School shooting describes the balance of good and evil present in each of us; "Since the dawn of creation there has been good and evil in the hearts of men and women. We all contain the seeds of violence.  The death of my wonderful daughter, Rachel Joy Scoot, and the deaths of that heroic teacher, and the other eleven children who died must not be in vain, Their blood cries out for answers."

When we are born we have an inheritant natural to do the wrong thing.  Our parents are usual the first ones to help us understand right from wrong.  Later there are school teachers, pastors, Sunday school teacher, Principals, policeman and bosses who help shape our understanding of the concepts of ‘good’ and ’evil’. Sadly not all people who influence our children’s lives are the types of influences we would choose for our children.  So often we here the phase “he or she has fallen into the wrong crowd’.  This is what is known as the ‘nature’ of the child vs the ‘nurture’ of a child.

To blame this young man’s parent’s for his unstable mind and any faulting thinking would be wrong.  A person’s behaviour is generally the end product of the chemical make-up of the brain and the sum influence of their environment. In other words society as a whole shapes who we are as individuals.

Sadly for some people their personality make-up might be such that the negative influence of even one or two people can determine their choice to perform what we may call bad acts.  However others seem to undergo tremendous trauma and go on to live what we might call good lives. Of course we know there are times when human behaviour is chemically altered by illegal drugs and alcohol.

Nor will the call for tighter gun control prevent further school shootings.  Again the voice of Daniel Scott expressed this so well to Congress "I do not even own a gun. I am not here to represent or defend the NRA - because I don't believe they are responsible for my daughter's death. Therefore I do not believe that they need to be defended. If I believe they had anything to do with Rachel's muder I would be their strongest opponent."

It is interesting that Conneticut has some of the strongest gun laws in the USA, and yet they did not prevent this tragic event.  This man first tried to buy a gun, but was unable. Not living in a 'gun culture' I do not begin to understand why anyone would want to own a gun, other than sporting reasons.  I am sure individuals have a variety of personal reasons for gun ownership.  Australia has some of the toughest gun regulations in the world and yet their were two separate shootings on the news this morning.  Our gun laws fail to provide us with full protection to pretend otherwise is foolish. "Guns do not kill people! Other people kill people". Guns just mean hat killing on a large scale such as we saw in Newtown is possible.  The are many of ways people find to murder people for whatever reason. 

Hopefully the thoughts I have expressed here show fruitless the search for answer is with complex individual such as ourselves.  For whatever reason this man was hurting and we as a collective society “unintentionally” fail him.  Leaving me to include him in the count of victims in the Newtown School shootings.
 
   

'Perhaps hate is best describe as the absence of love'
Please take every opportunity to let your children know they are loved.

Encounting The Spirit of Christmas

It's take two . . . The second annual 12 Gifts of Christmas starts in 12 days and we would love you to be involved. If you read my blog you will know I rate my involve last year as one of the best gifts I received.

"The 12 Gift of Christmas enable us to share the true

meaning of Christmas."

For me the concept or spirit of the 12 Gifts of Christmas (if you remember the song) is to give 12 different gifts or 'acts of kindness' each day starting on Tuesday 13th December. The founder of the 12 gifts of Christmas Trista Wilson has suggested the gift for each day which you can find on her Chain Links website if your plan to take part she has one simple request that you document your experience and share it will us. So your journey can inspire us and encourage others to take part in 2013!  Instructions on how to do this is on the website.

I will be sharing my 2012 experience here each day. Will there are suggested gifts for each day you can be creative if you wish or need to. As I work from home and am somewhat restricted by physical challenges I adapt my '12 gifts'.  While some of gifts cost a few dollars you do need to spend money to take part. If you join our community on facebook we will be sharing our experience there and I am sure you'll find plenty of inspiration.

I will attempt to post my 'creative adaptive list' before 13 th December.  Hope you will join us.

Debbie

For more information just leave a comment

NDIS introduce to parliement

 Today is a historical in the lives of thousands of people with disabilities, their families and carers around Australia as out PM has finally introduced the NDIS Bill.  The Bill we hope gives all people with disabilities regardless of  where they live the same access to therapy support services, respite care and essential equipment.  

It is hoped this Bill ends the lottery games and real funding is provided to meet real needs in our community. You can watch the PM's introduction here.  But as with any new legislation it a presentation of an ideal and much more needs to be achieve before every-bodies needs are meet. The fight is far from won. 'A significant life time disability' still needs to be defined.  Who is covered by the Insurance Scheme remains unclear.  A budget is yet to be set aside.

There's no time foe celebrations, it time to make sure the white paper is correct.  Terms and definitions are clear.  Now is the time to let MP's, regardless of their party know what you needs from NDIS.  We have all seen great policy speeches that yield poor results and wiped with a change in leadership,  We can not afford to let this happen.

I am asking until NDIS is part of the federal budget to keep telling you MP about real people with real needs, so this time every person with a disability needs are meet.

Thank you

Debbie

  

Peter's Story - Every Australian Counts

When They're Counting on US!

As a person with a disability I count myself blessed for being born in Australia, I find it difficult to imagine, myself being born in a country such as India, where no services exist and people labelled as ‘lame’ often are abandoned at birth because the child has no potential to support the family.
Back home in Australian I enjoy the blessings of being part of my family and the freedom to play an active role in my community. However, not every person with a disability is so fortunate. Many families live in a constant state of kaos as they struggle to meet the needs of their child who has a disability. It is usually the case the parents remain responsible for the child’s ongoing care well into their adult years. By which time their other children have established independent lives.

Even more heart breaking, are the stories I hear and read about of people who acquire a significant disability in later life. I hear stories from people who medical professionals deem beyond worthy of the same medical attention as an able bodied person, because of their ‘perceived’ limited ability to participate in the community.

Sadly the only option for some people, who acquire a profound disability during their adult years, becomes a life in a nursing home, where they are the youngest resident by twenty or thirty years.
Whether or not a person has a family who have the capacity to care and support a person with a disability should not be the sole determination of whether a person with a disability lives in the community or ‘in care’.

The sad reality in Australia at present is the types of support services available to individuals with a disability or families who care for a member of their family who have disabilities is dependent on so many variables. This area things such as where you live (different formulas apply in different states.); the type of disability (for example access to appropriate therapies for children with Cerebral Palsy are much more accessible, than children who have Autism, even when the child’s needs are greater), general community support plays a huge role in determining the quality of life some with a disability can have. If a community as a whole can advocate for a person’s needs then supports are developed.
Despite advances in human rights and disabilities standards, inequality for service provision and support carry a wide gap between one person with a disability and another. At present gaining any type of assistance is a game of chance. You fill in the paper work, jump through the various hoops and hope for something, often the tiniest percentage of what you actually need. The randomness of the successful outcome has no rhythm or rhyme to it. It’s like playing lotto sometimes your numbers come up, but often they don’t.

But thankfully after much shouting, protesting, submissions, interviewers, a royal commission things in Australia look set to change and people with a disability look like having the same access to services regardless of whether they live in Wollongong, Darwin or a cattle station in Western Australian. Sadly in my home state of Queensland the fight to join the National Disability Insurance Scheme still continues. However, the persistence and victories won by my fellow campaigners in other states helps me hold out for hope.

Meanwhile we continue to don on our red t-shirts, hold up our ‘Every Australian Counts!’ signs, and walk the streets until our voices too are heard. We will continue to write to our members of parliament, make phone calls, talk to the media, continue to share our stories, until we too have our needs covered by a National Insurance Scheme. Please visit http://everyaustraliancounts.com.au/about/ for information on the National Disability Insurance scheme and the recommendations of the productivity commission.
As we continue to echo the phase Every Australian Counts, until everybody will a disability has access to the same support and assistance as the peers living anywhere in Australia, including outback Queensland then you can join us at http://everyaustraliancounts.com.au/home/. Even better come join us on Friday 26 October for a disabilityTEA somewhere in this great south land, or even hold your own, and let people know Every Australian Counts.

This my friends is an example of what we at BAD#12 call The Power of We! The collective power a choir of voices can achieve. While it is difficult for an individual to create change when enough individuals speak or act together the real change can and does occur.
To day we bloggers around the world are uniting to spread the message that we do hold the power to change the world! I encourage you not just to read my story, the story of other bloggers around the world via visiting the http://blogactionday.org website.

Remember on the world stage of social change YOU’RE VOICE COUNTS!

STOP AND THINK BEFORE YOU BUY PINK!

Escaping the fact that’s its breast cancer awareness month in October has become as difficult as escaping the endless, Christmas commercialism  that once was isolated to December, but increasing seems to invade our lives all year round, losing its traditional Christian message, so much that I meet a growing no. of Christian who boycott celebrating Christmas. Let’s face it Jesus wasn’t born in December away, so celebrating his birth on 25^th of December in the mist of all the hype has become meaningless.

The question now bring raised by cancer survivors is has the ‘pink ribbon campaign’ become a victim of its own success. Are companies now just printing a pink ribbon on their products as a branding or marketing tool? And how is the money actually benefiting women who have breast cancer or early detection of breast cancer?

Supporting the McGrath Foundation

It sadden me to say their are companies and fundraiser out their who are sprouting the message for their own profits to the point that organisation who are fundraising put ‘pink’ buyer beware on there websites and their are now websites who publish a list of genuine fundraising  merchandise. The best way to ensure your donation dollar gets to where it is needed is by direct donation to the  Cancer Council in your state or well establish charities with a proven track record such as the National Breast Cancer Network  or Mc Grath Foundation. These genuine organisation build awareness and give direct support to women and fund raise all year round.  So you don’t need to fall trap to ‘think pink’ scammers, take you donation dollars outside the month of October if you wish. I recommend you buy your pink ribbon gear here.

"A pink ribbon on a item does not always mean your supporting women with Breast Cancer"

Today via a blog I follow I was me aware of the original meaning of ‘the pink ribbon’.  In a way was it was worn as a honour badge as a symbol of being a survivor of the disease known as breast cancer. Later it was worn as a symbol of solidarity worn by victims families and friends.  In its humble begins the pink ribbon was not about fundraising.  It was a powerful symbol of survival with a determination to defeat Breast Cancer.

Sadly in today’s commercialization of everything the original ideals held for the pink ribbon are lost. The hang on our dresses, shirts and ties like candy canes on a Christmas tree.  Pink is now the color of money, not a symbol of survival. Just like Christmas, pink October has fallen victim to branding and commercialism.

Together We Stand

Each year I am involved in hosting a Girls Night In typically recognised as ‘another breast cancer fundraiser event’ which it is not!  The Queensland Cancer Council’s Girls Night In Campaign is first and foremost about education of all types of cancers specific to women!  Of which, yes Breast Cancer is one, however at Girls Night In we’re also about educating women about cervical and ovarian cancer.

You can support my fundraiser here

By far the biggest threat to these cancers is early detection through education and early screening. This not only save lives but potential cost to the Health System, if we raise money bravo! It’s always seen as an addition.  I too am sadden in the past it was about reaching my target.  Now its – don’t want to donate, cool! Come hang out with the girls and remind yourself to be proactive about your health.  That’s why, I pack my girlfriends goodie bags with information showing them how to do self-examinations.  Hey, you can creatively do something like this yourself, simply designing a postcard or writing you girlfriends a letter.  You may end up being a life saver and that’s better than any donation amount. 

Although I having the girls over on Saturday night. It is not a fundraiser! It’s our night to enjoy being girls. I have chosen this year to host my fundraiser in November away from all the ‘pink ribbons’.

For me October is a chance to stop!  Take stock! Do the girl talk thing! Check our check-ups are up to date! And well party!!!!!

Our girl's night 2011

We’re having a craft night and will sell what we make at my pink Christmas and donate the money to the Queensland Cancer Council.  You can make a direct donation to them at My secure fund rasing page

So when you out and about and see a pink ribbon, STOP! Reflect on its original intent. Ask is that where you want your money to go?  Any by all means if the answer yes, or you need that particular items anyway, then I happy for you to make you purchase.  All I’m asking is you STOP AND THINK BEFORE YOU BUY PINK!

The Power of We

Blog Action Day is here again . . . and this year’s theme is The Power of We! Bloggers are hitting the key boards, ipads and phones to lend their voices to world change, because we believe we can use our skills to institute world change.  Whether our voices are calling for an end to the child sex slave trade, providing water for the people; bringing Christmas gifts, love and hope to children who have never received a gift before; treating AIDS; fighting for disability reform; dispelling myths around epilepsy; educating women about cancer and making it a preventable disease; We members of BAD#12 believe our collective voices are heard and result in real change!

Mother Teresa one of the greatest humanitarians of our times said, “If you can’t feed a hundred hungry people, then just feed one.”  For me, the true meaning of the power of we, is about millions of alone voices, joining collective voices, changing our world one person at a time. You can smile at a stranger, you can hug someone you love, you can feed a stranger, you can build a well for clean water, you can provide a child’s school books, you can pay for a vaccination, you can urge a girl friend to be diligent in her own health care or you can give a stranger a copy of a book that influenced you the most. If enough of these one off acts are performed by individuals then a catalyst for world change has begun. Will you join me on World Blog Day to knock down a domino to create a change in our world, because we do hold the power?  

  

   

Girl's Night In - We hold the power to create change!

Running towards a million acts of kindness

Fighting Chance


Hi I'm Debbie,

If you haven't meet me, I am just a regular Aussie with a few hurdles to jump each day.  I am just one of many Australians who has physical challenges.  I was born with CP and have epilepsy. This month I have taken the pledge to be part of a relay team to complete 1 million acts in 8 weeks.

Having recently been ill I have pledge to complete 2 acts of kindness each week.  As part of my journey I am hoping to give kids with disabilities a Fighting Chance. Fighting Chance aims to create a world where people with disabilities live individual lives without limits. I want to invite you to join me on my journey towards completing 1 million acts of random kindness by making a donation to Fighting Change in order to make this world a better place to be.

You can follow my progress and the teams progress at 1million acts  or follow on  twitter or facebook. Please take time to visit and learn more about my charity today. email me to join my team or sponsor.  I
am wanting you to be mindful that people with medical conditions and allergies wear jewellery to alert passages by of their condition if they need help.

I was reminded that if I have a seizure it could be assumed I'm drunk, taken a overdoes, or diabetic. Wearing jewellery takes the guess work out of what might be wrong and can save valuable time. August is about beware and showing you care!

Thank you  
    

Queensland a state where not everyone counts!

From where I sit in my wheelchair and as a public advocate, it seems that Mr Neuman is making more cuts to the human service than anywhere else.  He seems to focus on potential revenue raising such as hosting sporting events and naturally support business, rather than continuing to pay for the human services that state governments have always meet.  Open your eyes and see Queensland is still a growing economy (may not that of the past). If the state invested in its greatest asset - people than more participation in the economy would occur. Those with positive approach and good well being are going to contribute more over time than one off sporting and corporate evens.  If we can afford to host APEC why can't we afford hospital care, NADIS, advocacy funding for tenant, mental health services, transport, maintenance to Queensland public buildings. e.g schools, hospitals & relate health care including buildings that house health services like breast cancer clinics,  , libraries; public transport; education and emergency services! I hope Campell doesn't have a heart attack and at a time the ambulance service is stretching at the seems and fails to respond in time.  All I can say my prorites for cutting debt would differ and continuing down this road he made be a one term Premier. 

Bitter Medicine

In a pill-popping world there are those who like to think there’s a pill to cure all ills. There are pills to take away our pain and pills to kill infection.   Pills that they say help with stress, boost our immune systems, pills that help us sleep or keep us away during the night. Pills to help us fight cancer and stop our body’s rejecting organ transplants. We can use a pill to supplement vitamin C and D and even iron.  But sadly there are times that the miracles of modern medicine fails to kill our ills and delay the process natural of decay, and we as humans struggle to understand why at times the pills fail; why pills can’t fix all ills and furthermore why pills work for some and not others.

For me this confirms we are made by design! We are individually fearfully created by God, and yet we struggle to comprehend why one medication works for one person and not another. 

Recently I was in hospital, the three studders were release, while the two ‘bad boys’ have returned to the grinds of daily lives with the assistance of medicine, this rose bud struggles to take growth, to open and bloom as she desires.  As I swallow a increasing amount daily bitter pills, I remain still quiet ill and fragile and my return to community life at times feels like a fading distant hope. 

My bitter pills are at best only enough to afford me a life outside of the hospital walls, while I wait for more tests.  The right medicine to help this rose bloom once again is dependent on a diagnose and the right treatment being found.

As common as epilepsy is and the many different pills on the market, for 30% of suffers, the pills we take are bitter and the seizures continue.  My recent hospitalization has been an awakening, a stark reminder that a common treatable illness still takes lives if the seizure is serve enough.  I thought I was safe and my bitter pills at least kept me alive, until I worke up in rescue in the hospital Emergency Department, the pills no longer work, we need to find new ones and determine if the lesion on my brain is marching repeating havoc. A simple MRI will tell us that, but when you have CP with involving movements routine test like CT scans and MRI’s are not so routine and it’s another bitter pill to swallow.

Bitter medicines are far from being the answer for all patients my team of specialists are optimistic that the test will confirm their gut feelings and the right medicine is accessible but having no medical insurance another bitter pill puts me on a waiting list and delays my recovery.

In a world of instant results friend and family want pills to enable me to be involved in life.  


Me! I just want space to rest in God’s loving arms while I wait for the medicine designed to bring the rose back to full bloom again.    

Epilepsy is just proof of having a brain!
Where's your proof?

A Case To Plead

Due to successive failures of the Queensland State Labour Government, I feel myself living in limbo with my freedom to live an Independent life style stolen away. Under the Labour Government the Department of Disability Services introduced The Growing Stronger was designed to give people with disabilities greater lifestyle choices to engage in the community.

Today I sit here with my choices and freedom frozen in time, as I wait for both Queensland Disabilities Services and Queensland Health to act.  To receive assistance through Disability Services I must have a permanent disability that is unlikely to improve without medical invention.  Yet I sit on a Queensland Health waiting list for medical test to determine if my new potentially life threaten disability can be treated, only when all treatment options have been explored can my application for assistance from Disabilities Services be reviewed.

 

Anyone to accesses the public health system knows, waiting lists can take years.  As I wait my active community life is now denied. I can no longer travel to work via taxi on my own, until I have doctors clearance.

The irony of my situation is I already have a permanent disability, as I was born with Cerebral Palsy and at 43 I am beginning to experience the effects of the aging process, this disability alone qualifies for assistance by after 10 years I continue to sit on the waiting list for assistance.

Calls pleading for extra immediate assistance from my doctors over the last 4 weeks have fallen on deaf ears.  Call back if her treatment fails or her condition deteriorates. While this makes no sense to my doctors, I just smile back saying, why would the pay up if they don’t have too.  After waiting for 10 years this attitude makes sense to me. 

Add to this logic is staff at Disability Services are still waiting for the Newman's governments polices changes to filter through and the end of the financial year looms. Now is the least likely time for the Department of Disability Services to be spending money.  My illness is ill timed indeed. And so I sit wait on a hospital waiting list trapped in my home until doctors clearance grants me freedom to move about independently in the community again. 

Every Australian Counts or Do They.

Please Support us on April 30th 2012

 While my fears and distrust still continues over whether a fair system of funding the Disability Sector can be found at least the NDIS brings hope. Despite having Cerebral Palsy; uncontrollable seizures and multiple health related problems, meeting my individual support needs has never been funded by directly the state government through disability services.  After more than 10 years I am still waiting for my support service, despite a category 1 rating, which I no long have as I’m too high functioning, I continue to wait for direct assistance.  How ‘disable’ will I need be under NDIS?  Under this ‘fairer system’ will I quality?

Or will it simply mean I have no access to other services under HACC. Being born with a disability they tell me will automatic mean I can access National Disability Insurance Scheme.

My hope for the National Disability Scheme is eligibility and thus service delivery is based on meeting my needs.  It focus is on what I can’t do without support.  So much support services are reflective.  I am tried of the one size fits all band-aid solutions.  I get help with things I know I can do, but not things I can’t do.  Under the current system I see so much money which could be better spent to support people with disabilities and the there families if funding was directed towards meeting actual needs rather than perceive needs.

I hope long after NDIS is established people with disabilities and their respective support systems continued to be consulted about service delivery and reforms. My name is Debbie Chilton and this is not only my story but the story of thousands of other Australians.  Please lend you support and make NDIS a reality.

An inside look!

I wonder if you could imagine what it is like to have no. of different people in your home each week to assist you with basic living tasks. Last week I six different works and friends who assisted me with my goal of living independently, I must admit getting to known three new support workers made the week more difficult and there week three days where I hardly had the energy to talk, yet alone explain to a stranger how I wanted things done.

I have made an effort just to standard back and observe workers and people over the last two weeks, have very little energy helped.  I never noticed how much we like to put our two cents worth in. I the same when a friend is sick drink lots of water take pandol , have you tired . . . I know my friends know what to do when they have a cold or the flu.  But I say it anyway. . .

So how do expect my workers to do otherwise?  I can’t! I need to learn to be gracious and take everything on board. I am thankful that they are caring people and say ‘thanks’. I hear what you’re saying but it doesn’t seem to fit with my experience.  Just as they don’t justify their opinions, I need to learn I don’t need to justify my response.  I should feel the need to agree just to keep the peace, especially in my own home.

Thoughts and opinions are one thing touch, moving or telling me where to put things is another.  So in I allow this imagine how many things could find move home in week.  At the end of a week no one can fine anything and that uses up precious time workers can be doing things not to mention my energy when I here on my own.

I been wondering where all my cloths have disappeared to.  Being in bed all week I wear my pj’s  It took ten days to discover, all my t-shirts are in my wardrobe, I’d convince myself I’d must of given them away.  Other things had moved too. Only one thing did the worker ask to move and that’s another of what happen when I said ‘no’ . . .     

Understanding my workers are trying to be helpful doesn’t seem to ease my frustration of constantly asking things not be moved or having to justify where I put things or what I buy for my own home. There are times when I feel battled fatigued. Days when I don’t want my books picked up or my craft put away, I struggle to explain why I want to be left alone and for one day just not to argue, defend or explain my choices.

Just for one day I wonder how others would feel letting others into their homes for help and defend or even change where they put things. Surely after one day they would understand a little . . . 

Purple Day

Purple Day 2012

It's time to step out . . .

. . . from under the shadows 

My name is Debbie and I confess to having epilepsy like 1 in every 50 people! If epilepsy is so common why and I tell you this? I need to announce that I along with thousands of other Australian have chosen today March 26 2012 to step out of the shadows and tell people we have epilepsy by wearing purple!  March 26 is purple day!

We want to invite you to come and stand beside us in the bright sunshine and stick out like a sore thumb by wearing purple today!

CASSIDY MEGAN 

Purple Day was started in 2006 by Cassidy Megan who was only 10 years old at the time.  Cassidy simply wanted “people epilepsy to know they were not alone.” Will you wear purple with her today to see her dream achieved?

This year I in choosing to step out from under the shadow and pulling on my purple day T-shirt I will be supporting Epilepsy Queensland and Epilepsy Action Australia. Many I take this opportunity to ask you to become a Purple Day Hero by making a donation to one of these organisations or pick up some purple day merchandise. The links are in the right had column. 

Epilepsy is a very common disorder in our community and yet many myths surrounding the disorder and first aid of seizures still exist.  Since suffering my first seizure over 20 years ago, people has offer applied inappropriate first-aid.  One of the goals of Epilepsy Action Australia this year is to educated people on basic first-aid for people who experience grand-mal seizure, chatonic seizures or complex partial seizures.  These are these are the types of seizures you many one day wittiness. Although there are over 40 different types of seizures and not all of them are classify as epileptic seizures.

In explain basic first-aid procedures it is often easier to tell my family, friends and support workers what not to do.  Rather than present a first-aid blurb myself I’d like to ask you to watch the video in the previous post and then download the first-aid poster at Epilepsy Queensland

When I moved out home (for the second time – a typical Aussie kid) they was a mixed reaction. Some people were horrified my parents would let me leave home.  Well at 28 thought to ask my parents permission didn’t occur to me and to them it had become obvious that I was not happy and needed to try to live independently.  And then the what ifs.  What if I had a seizure, like it had never happen before.

The truth be told, my seizure are probably not epileptic and are complex partial seizures.  While basic first aid is often needed but not necessary. I am fortunate I usual get a warning. If I am at home I simply lie on my bed, have a seizure and then roll over and go to sleep.  The other blessing is I have most of me seizure at night and less I am unwell.  When I get sick for some reason that throws my medication level out.

I am part of the 30% of people whose seizure can not be fully controlled. I am told this is the norm form people who have a combination of Cerebral Palsy and epilepsy. CP does not define who I am and thus I am determine to not let my seizures define me either.  I accept it prevents me form having a full time job and driving a car, but that’s where the limits stop.  Those too limits are imposed by other people not me.

"Epilepsy doesn’t define me!"

So now I walking in the sunshine will you join me by wearing bright purple on March 26 Every Year?

       

 

More on Purple Day

Purple Day- Seizure Disorders and First-aid

Purple Day Celebrates around the world

Make it Real: Rally launch

Stand up to Bullying

It seems that anyone who is in someway different can be bullied. Today is International Day Against Bullying! Recently in the States a high school boy was bullied simply for wearing a PINK Shirt to school.  To support this boy and to stand up to this Bully, the students decided they all wear pink shirts to school. So  the bullies be the ones that stand out.  The teachers decided they would support the students, by this is very much a movement driven by students. When other school heard the students decided they wear pink shirts to school today to. Proving that it only takes one person to create change, regardless of their age. 

The truth is bulling isn't about the person whose being bullied, but the bully trying to make themselves feel better about themselves. The fact that the students chose a guy in a pink shirt that day proves that. You can be too short, too tall, too fat, too thin, to smart, to dumb, black, white, Asian, wear glasses or hearing aids, have a disability or just wear a pink shirt. 

If a bully  is looking for a target he or she isn't looking for a particular type of person, just anyone who I can feel superior to.  I wish I knew that as a child.  I was bullied for most of my school life because I had CP.  Although I didn't always see it that way. 

At one stage I convinced myself it was because needed to wear different school shoes.  A bit like the boy in the pink shirt I guess.  Somehow I convinced my mum and my physiotherapists to let me wear normal school shoes.  Of course that didn't stop them for bulling me.  Looking back, I was trying invein to look just like them and that gave them the power th needed to reduced me to tears and hide out in the library. That lasted until I was in Senior when I stood up and challenged the bullies.  In effect I made a claim I was stronger than them.  At least on the inside.  The bullying stopped that day.  Of course bullying doesn't stop because you grow up. The bullies grow up too.  I have been bullied in different ways at different times during my adult life, because the person wanted to prove to themselves that thet were better than me of I needed them.  So let's all stand up to bullies today.     .  

How do we communicate?

After 43 years, I still wonder, why people receive that people with disabilities such as cerebral Palsy, especially those who are who are non verbal are lower of intelligence or as intellectual disabilities. As I watch my non verbal, talk with them and laugh with them.  I can't help wonder what it is like for people who are also non-verbal and don't enjoy the depth of friendship that we share.

Recent debate over facilitate communication has me hot under the collar and the organisations who advocate for people with disabilities consider even questioning this means of communication, just does my mind in. This an issue I thought we put to bed in the late 1980's.

There is no doubt in my mind that facilitated communication is a valid from of communication. I guess due to my life experience I have never stopped to question other people's intelligence. I am yet to meet anyone I can not communicate with on some level.

And yet there are other people I meet and (verbally) with talk and yet fail to communicate. The presence of saying something to someone does not mean meaningful communication has talk place, nor does it tell you any thing of the intellectual  ability of people who are talking.

For example when the shop assistance ask you how you day is, are you speaking because that's what people do or are you having a meaningfully communication with someone.  I assume if you are reading this you at least have the comparsity to understand the difference between dialogue and communication. If not ask of parent of a teenager?

Communication implies a level of understanding between two people, if I am with a non-verbal friend and they laugh at my  joke that tells you they have heard something fully and thus communication has taken place. The fact my friend does not have the motor skills to use a communication devices does not incidate on any level their ability to understand and communicate with me.

I wish everyone at some stage of their life had to learn, eye language. Yes I said eye language. People waking from commas use it offer, before the ability to speak returns.  Even people who can make some noise, like laugher I find prefer to talk with their eyes.  You know by some eyes whether you connect of not and people eyes often tell me they're are talking but not connecting.

Can facilitated be manipulated of course?  So we should dismiss it and not let people access that means of communication.  I am not allow to surgical remove your ability to talk so why should anyone deny anyone the right to attempt to communicate. Just because it is manipulated by a few dishonest people?

I do wonder if our failure to communicate non-verbally saids more about our own intelligence rather than the person were talking too. ..

This quote just seem to fit

Why Celebrate Purple Day?

You Decide

Al Jazeera's Response

KONY 2012 

"She make's some interesting points, 

Of course someone should ask what

the people of Urunga want!"

THANK YOU Al Jaeera for 

Speaking Up!