As we approach Samara's 3rd birthday (this Friday), we have had another week of tears surrounding Samara's diagnosis. Not because she has Down Syndrome. Not because she is partially deaf. Not even because she has been sick - again. Not even because it is an anniversary.
No, the tears come from the rejection of her country of birth. We have been receiving help from Disability Services for 2.5 years now. We came to Australia from New Zealand a little over 4 years ago. At the time we were unaware that the policies regarding New Zealanders in Australia had changed. We can still live here without an official visa permanently. We can still get Medicare. We can still get Family Tax Benefit. And we can most definately still pay the same taxes as everyone else!
But, if you dare to have a child, even a child born in this country, with a disability. Well, equality is no longer an issue.
In a little over 4 weeks, we will reach the anniversary of when we found out Samara had Down Syndrome. It was the same week we found out that Australia has official policies preventing the 'unwanted' from getting Permanent Residency. That, even though she was born here, the only way we, as a family, could get Permanent Residency was to move to the back of beyond and apply for a medical waiver (something that was not available as an option in the city). A medical waiver for a newborn baby girl. A baby who was conceived and born in this country. A baby this country did not want.
You see, 10 years ago, Australia changed it's immigration policy. Being born here doesn't give you citizenship. Not of this country, and not of your parents country. Yes, that's right. At birth Samara did not have citizenship of any country. And right now, she only has New Zealand citizenship by descent, which does not give her full citizenship rights. So in reality, she's only a semi-citizen. And even then, it is of a country she has visited but twice in her life. Her own country will not consider her one of them until she is 10 years old.
Now, this applies to everyone. Not just because she is disabled. So why do I call this discrimination?
Simple. The services she was getting from Disability Services Queensland.......Well, she has had them taken away. Why? Because she is not a citizen.
The financial help offered to all parents of disabled children through Centrelink is not available to her. Once again, because she is not a citizen.
The community cards that mean she can have a Carer attend theme parks etc for free she can't have, even though it costs the government nothing, because she doesn't get a Centrelink payment.
The funding we applied for from Lifeline, she is no longer able to get, because she is no longer registered with Disability Services.
But the thing that really hurts, is we have moved waaaaaaaaay out to the back of beyond in the hopes of getting that medical waiver. It is extremely expensive to live out here. The mining industry has pushed rental prices up way beyond what we paid to live 100 metres from the beach in Brisbane. Groceries are expensive. Travel too and from Brisbane to hospital appointments has killed both our vehicles. And on top of all that, we have to come up with $4500 to apply for our Visa.
And you know what.....After all this, they could look at Samara's diagnosis and say 'nah'. And there is not a thing we can do about it.
We just got a $1200 power bill. I don't know if that's because of the oxygen concentrator or what. But if we had our Visa, we would have been able to get some help with it. As it is, well, tough.
We didn't come to this country knowing what was ahead. We didn't plan to be in this situation. We came here in good faith. We love the country. We love the people. And we try to give back to the community as much as we can. We are decent upright people trying to make it in this world.
But we weren't born here. And in fact, one of us was born here, and that's still not good enough. Well, one day, Samara WILL be an Australian citizen. And when that day comes, it may be too late for early interventions that will make her more independant. Ironically, the cost will then come down on them. More than it would if they helped her now.
Anyway, that's my story. But what are the larger ramifications of all this?
Quite frankly, discrimination.
This country has the highest abortion rate of prenatally diagnosed children with DS in the world. 98%. That's right. 98 out of every 100 children diagnosed in the womb are killed for the 'crime' of being disabled.
Among many in this country (definately not all, but way too many) there is an attitude of 'why should my taxes go to support r****ds'. There is an attitude of violence towards many with developmental disabilities. (Once again, please note this is in the minority, but the link between the average Jo Public not wanting these people, and the Government not wanting these people is definately there).
And now, things have become so much about money, that people are suing the doctors for 'wrongful birth'. WTH???? This is your CHILD people!!!
It is difficult being told your child has a lifelong disability. It is difficult living with the financial ramifications of this. Parents of children with disabilities have so many stresses. This is why the government has any sort of help at all available. But, no matter that you are in this country legally, no matter that you pay taxes like everyone else, no matter that you were BORN in this country. We don't want to help you. You have to make your case in an expensive Residency application to convince us we ever want you. You are not one of us.
We will stay here despite the hardships. I love Australia. We need the warmer weather for Samara's health. And quite frankly, even if it kills me, I will MAKE them accept Samara by being here beyond her 10th birthday, when legally, they can no longer discriminate against her. She WILL be recognised for who she is. A fully fledged Citizen of Australia. Her country of birth. Her homeland.