"O, to be in CHINA"
Wouldn't treat a dog the way some of the doctors are treating the disabled and their carers here in Australia. Help me! Help us!
What words other than cruel and inhumane could describe any doctor stating that it was not important that I be mobile and capable of independently rolling myself over in bed. Or mobile for any other activity either. That an amputation of my painful, useless, dead weight lower legs was not going to happen though there are doctors wishing to do this for me.
But, as I am part of the public medical system here in Australia, I am prevented from accessing this life changing surgery. And it seems Hon. Jillian Skinner, the Health Minister and the HCCC (Health Care Complaints Commission) have turned their backs on me. As they have on others. For it seems they are controlled by a handful of powerful doctors suggesting they 'drop it'. She recently commented on the bullying within the medical profession but nothing much has or will be done about it. Just all talk as it seems the rot has spread too deep.
Many severely disabled in Australia are deliberately confined to wheelchairs as it is so much more 'convenient' for those on pay roles to 'care' for someone like me. I do know as I've experienced out of home care environments. Denied proper physio and medical treatment that leads us to being more handicapped then we should be. Placing more burden on our family, friends and carers.
Too many handicapped end up institutionalised unnecessarily due to the lack of appropriate support. Some in the medical arena who I've met recently see no problems with my carer burning out and being forced to place me permanently in a home where these professionals admit I'd not receive adequate and/or appropriate care and die early. I don't mind dying. In fact, with all that is happening and apparently not going to happen, I want to die. I just don't want to die a painful undignified death like so many others before me who could have lived. I don't have to be institutionalised and die if only I was allowed the medical treatment suggested by a world leading orthopaedic surgeon.
My carer has told me on several occasions that he wishes he could take me to China and stay there. For in China there's world class treatment for those with cerebral palsy and deep respect for those caring for the handicapped; they actually get support. Russia sends annually 60 children to China for treatment and has been doing so for some years now. http://cpcerebralpalsytreatment.com/russian-children-with-cp-travel-to-china-for-treatment/ But here in Australia only a handful of children get what they really need within Australia. And the adults...well, that's solved by just employing more people who generally don't know how to handle those with cerebral palsy; just take them shopping and on outings - while remaining totally wheelchair bound - instead of combining outings that would actually have them physically active in some way to decrease physical degeneration cause by physical inactivity.
I just don't know what to do. I feel so helpless and powerless in a country that professes to be so free and care so much for it's vulnerable when it doesn't. Hon. Jillian Skinner and HCCC, please, break the silence. Help me and so many others.
What words other than cruel and inhumane could describe any doctor stating that it was not important that I be mobile and capable of independently rolling myself over in bed. Or mobile for any other activity either. That an amputation of my painful, useless, dead weight lower legs was not going to happen though there are doctors wishing to do this for me.
But, as I am part of the public medical system here in Australia, I am prevented from accessing this life changing surgery. And it seems Hon. Jillian Skinner, the Health Minister and the HCCC (Health Care Complaints Commission) have turned their backs on me. As they have on others. For it seems they are controlled by a handful of powerful doctors suggesting they 'drop it'. She recently commented on the bullying within the medical profession but nothing much has or will be done about it. Just all talk as it seems the rot has spread too deep.
Many severely disabled in Australia are deliberately confined to wheelchairs as it is so much more 'convenient' for those on pay roles to 'care' for someone like me. I do know as I've experienced out of home care environments. Denied proper physio and medical treatment that leads us to being more handicapped then we should be. Placing more burden on our family, friends and carers.
Too many handicapped end up institutionalised unnecessarily due to the lack of appropriate support. Some in the medical arena who I've met recently see no problems with my carer burning out and being forced to place me permanently in a home where these professionals admit I'd not receive adequate and/or appropriate care and die early. I don't mind dying. In fact, with all that is happening and apparently not going to happen, I want to die. I just don't want to die a painful undignified death like so many others before me who could have lived. I don't have to be institutionalised and die if only I was allowed the medical treatment suggested by a world leading orthopaedic surgeon.
My carer has told me on several occasions that he wishes he could take me to China and stay there. For in China there's world class treatment for those with cerebral palsy and deep respect for those caring for the handicapped; they actually get support. Russia sends annually 60 children to China for treatment and has been doing so for some years now. http://cpcerebralpalsytreatment.com/russian-children-with-cp-travel-to-china-for-treatment/ But here in Australia only a handful of children get what they really need within Australia. And the adults...well, that's solved by just employing more people who generally don't know how to handle those with cerebral palsy; just take them shopping and on outings - while remaining totally wheelchair bound - instead of combining outings that would actually have them physically active in some way to decrease physical degeneration cause by physical inactivity.
I just don't know what to do. I feel so helpless and powerless in a country that professes to be so free and care so much for it's vulnerable when it doesn't. Hon. Jillian Skinner and HCCC, please, break the silence. Help me and so many others.
Above images are of me as a youngster. I was so active; arms so strong and straight. But I did not receive any appropriate physio as I grew older. Just placed in a wheelchair. I want my life back.
So presently my desires and dreams to become a volunteer and get out in society is far away and may remain so. Instead, I am now mostly confined to home watching TV and playing on my iPad. No, I do not like being a couch potato and neither does my carer. I so loved climbing up and down stairs and playing on the floor as a child; interacting. All that was taken from me when some professionals at my school advised I be placed in a wheelchair at the age of 12. From that point I lost my mobility and became a prisoner of my body that quickly seized up and a prisoner of wheelchairs.
