Gayangwa Lalara's speech from the MJD Foundation Launch
My name is Gayangwa Lalara and this is my community.
I am a Warnindilyakwa woman.
Names are important to aboriginal people.
Aboriginal people have names for everything because it is important to identify and understand.
When this sickness came to our community many years ago, we didn’t know its name or what it was or how to stop it.
We didn’t know how to care for our sick people.
This sickness did not respect my family and took away 2 of my sisters and a 2 of my brothers. I have for 15 years cared for 2 of my sister’s children and now I see younger ones in my family are sick. My 14 year old niece is now in a wheel chair.
No one was interested in helping my people, especially my family because their needs were so great.
I felt shame and we blamed ourselves.
I now know the disease has a name - Machado Joseph Disease.
Knowing the name of this disease has not stopped it affecting my family and others, but has helped us understand it a little better and now people are helping.
We have wheel chairs and ramps in many of our homes and our community has built this aged care centre. Here, those with a disability and those who care are given respite. When people finish up they don’t have to be in Darwin and away from their country and family. They are supported when they die here in Angurugu.
But we don’t want our people to suffer from MJD and die unnecessarily.
I am pleased people now see the problem and want to help my people who are suffering and find out how to help those who have the disease and those who will get the sickness in the future.
I am pleased that there is help from not only inside my community but people from the outside, even from overseas.
I don’t feel shame and we don’t blame ourselves anymore.
I feel proud to be part of a mob of people trying to make a difference for my people.
Before we didn’t know what this disease was, we struggled to care, there was no hope for the future and we felt shame.
Now we know what the disease is, it is a little easier to care; there is hope for the future.
And we are proud in our care and in fighting this disease and proud of the MJD Foundation
We not only know the name of the disease, but we know the names of all the people who are joining with aboriginal people to make a difference for those with MJD, those who care for them.
Libby Morgan grew up on this island and she wanted to do something to help those with MJD. She has worked from the start on setting up this foundation.
She has done so much and left her family to come back here to help us.
To Libby and all those people who have and are helping us, we say: