Lets get one thing straight here - having a disability isn't the end of the world you know

So I was watching the TV reality series - One Born Every Minute USA - in which one of the mothers was expecting a Downs Syndrome child and the nurses whilst trying to be sensitive about the issue, one of the other nurses said something that made me realise that this is what society needs to do and think about anyone with a disability regardless of a Physical or Intellectual Disability.

What was it the this Nurse said that made me feel somewhat proud and realise this is what society needs to think? It was that he had yet to meet someone, parents, family or friends who are yet to say they regret being pregnant because of a disability.

And thats true in my family. My Mother, father nor brothers regret me being born with a disability and certainly there are days I may do but thats because of the way society generally portrays people with disabilities. The way most of society thinks of people with any kind of disability is that we are a drain on society and shouldn't exists and my thoughts and saying to those folks is that they are the drain on society.

You only have to look at the Paralympic games (both summer and winter versions) to see that regardless of a disability anyone can do anything. Yes as someone with a disability you will have to do things differently in your everyday life but you are you - disability or not and no matter what if you put your mind to it, you can rise to achieve that goal.

And that certainly is my goal and we as people with disabilities SHOULD, yes should talk about what its like to live with our disability. We should talk about our achievements, our failures, our thoughts and suggestions but also how to make sure we have set the stones for the future and ensure we discuss our issues, our stories, everything with everyone so they understand.

Understanding will be the key to setting the tone and the path to the future to people realising what its like to have a disability but also help plan how to ensure the tools to help people with disabilities live in a truly accepting and inclusive society.

Nothing this day and age is that we certainly don't live in a perfect world and it certainly isn't a utopia honestly. So lets stop thinking everything needs to be perfect because it doesn't honestly exists. Simple!

So let get out there, talk, discuss, argue, suggest and tell our stories as people with disabilities but also to people without disabilities listen and understand what it is like and what we do in our everyday life to keep us going.

Lets start these discussions and stories now!

NSW Health.....Needing its own health check

I know I have somewhat talked about this in the past, but its one of my issues which is close to my heart because I think the way in which NSW Health currently runs for not only everyone, but more so people with disabilties is disgraceful.

For example, as I have Spina Bifida, I attend the Spina Bifida Clinic at Westmead Hospital (the adults hospital) in which at the end of the day, it has become a "referral" clinic. Basically you see one Doctor who might know a little bit about your condition to which they say you need to be looked into and referred to say the chronic pain team or see the urology clinic or the neurosurgery clinic, etc. Now yes that is somewhat good because it does 'streamline' services, but it doesn't help the patient at the end of the day.

Why?

Simply because referring to these clinics can lead to long waiting times, to which currently the chronic pain team or clinic are currently not taking on any new patients at westmead unless its honestly an emergency, otherwise the waiting list stands at a minimum 2.5 years before your going to even get in the door. And that is only the start, or end when you think about it.

I don't know how or why things have gotten this bad. Yeah ok the previous Government did undercut or not invest in health, but given now funding has somewhat increased, has things gotten better - hell no!!

I mean, what happened to the good old days when I was a kid and went to the children's hospital at camperdown and then Westmead when it moved and I attended the Spina Bifida Clinic and you would see all the doctors you required right there on that clinic day (which is generally a Friday, or used to be) and you would only get a referral if you had to have tests or if a certain Doctor was not able to make the clinis that day.

Its like that was the good old days or more so, when you're a kid, they chuck all the resources at you, but once you become an adult and get 'referred' to the adult clinics respectfully, ots like thank you and well good luck.

Its a joke and both politicians, department and hospital heads need to make change happen. Yeah it will probably be a painful change but its a necessary one if you ask me. Its time that we look at what can be done to make things become better for the patient instead of the hospital and the budget at the end of the day, because there should NEVER EVER ABE A PRICE ON ANYONE'S HEALTH at the end of the day!!

I am sorry for the caps words above but I am frustrated and over it. No one wants to make change happen for the better and they seem to want to put a price on patients or you and I at the end of the day health wise.

Its just not on and not certainly fair!!