Tony Koch | August 15, 2009
A TINY, black-skinned woman on remote Groote Eylandt, off east Arnhem Land, her shoulders slumped from decades of pain and unimaginable hurt, looks shyly down as she speaks in a whisper of "blame and shame".
Yet the battle this amazing Aboriginal woman has dealt with through all her life marks her as one of the most courageous humans alive today.
It is hard enough to live in a community in the grip of a hereditary degenerative disease for which there is no cure.
But the hardship of life on the island is compounded by the empty promises from government to indigenous Australians living in remote communities in conditions that locals correctly describe as "below Third World".
Just over 18 months ago, the federal government announced a $672 million allocation to the Strategic Indigenous Housing and Infrastructure Program in a massive assault on the accumulated disadvantage. But as The Australian revealed last month, not one house has yet been built under the program.
Bureaucratic red tape, a confusion of organisations, the employment of "consultants" with their endless visits to the communities and a creaming off the top by the Northern Territory government has delivered the usual result: nothing. What most defies belief is that the federal and Northern Territory governments know that the lack of appropriate housing on remote and regional communities is critical.
Commonly, three-bedroom houses with just one toilet and shower have to accommodate more than 20 people, including the elderly and the newborn.
The houses cannot cope, and neither can the occupants, who usually have nowhere else to go. On Groote Eylandt, there are families living in tents on the beaches because they can no longer live in the homes. Yet they still have $30 a week deducted from their wages or dole payments to meet the "poll tax" for the shameful housing, even though they are not living under a roof. The heart-wrenching example of Gayangwa Lalara must soften the most cynical political heart. In reality, it should be enough to see Kevin Rudd strap on a nail-bag himself and help somebody whose degree of need almost defies belief.
Gayangwa is 65, a proud and intelligent Warnindilyakwa woman revered in her island community for the strength of character and family loyalty she exhibits.
She nursed her father for the 20 years he took to die when afflicted by the mystery "Groote Eylandt Syndrome".
It is a cruel way to die, with the brain fully alert but the body functions and muscle control gone.
There is no cure for what has now been identified by medical researchers as Machado-Joseph Disease, a hereditary neurodegenerative condition in the disease family that includes Huntington's disease, and for which there is no cure. MJD is an inherited autosomal dominant disorder, which means each child of a person carrying the defective gene has a 50 per cent chance of developing the disease.The first signs are the child, youth or adult developing a "drunken sway" gait, and mobility and muscular control degeneration follows. Within a decade, the patient is confined to a wheelchair, incontinent and without any control over limbs or muscles, unable to sleep and awaiting death, which in most cases can take up to another decade.
Gayangwa's three brothers saw their father die. They were in turn diagnosed with the disease and died, as did her two sisters and a young nephew. A niece, now 14, is already confined to a wheelchair, having been confirmed with MJD as an 11-year-old. The mutation of the disease when passed to the next generation -- the anticipation effect -- means symptoms appear eight to 10 years earlier and are more severe. Medical experts estimate that 300 Australians, mostly living on Groote Eylandt and several other Northern Territory communities, will develop MJD.
The disease is thought to have been introduced to Groote in the 16th century by Portuguese sailors. Yet despite Territory and federal governments knowing of the dreadful disease for four generations, little real attention has been paid, particularly regarding the provision of MJD-specific infrastructure.
Gayangwa lives with eight adults and four children in a two-bedroom house. The residents include her wheelchair-bound niece, Rosanne Mirnyowan. The small loungeroom has a string across the centre with sheets hanging from it so an improvised bedroom can be made for four adults, who sleep on mattresses on the floor.
They each pay $30 in rent for the house, which has recently had added a purpose-built disability shower and toilet block. The younger family members have lived with older adults dying in the house and know the stark truth that one morning they could wake up with "the drunken walk" -- and face 20 years of undignified suffering before death.
Although a blood test would confirm beyond doubt whether they are to become MJD sufferers, the young people are frightened to know the result. They live a life of horror and fear.
But the house, like so many on the island, is a wreck. It is not vandalised -- just worn out because a single house with one bathroom and a small kitchen cannot cope with the needs of the number of family members who need to be housed there because of the accommodation shortage on Groote Eylandt.
Gayangwa points to the overcrowding, and speaks again of the "shame" she has of showing outsiders the living conditions. "All I want is a house like white people, with enough bedrooms for my family to live in properly," she said.
She cannot understand why she and other families like hers -- the traditional owners of the land -- have to live in such conditions, and is tired of the endless political promises that do not change the sad ratio of Aboriginal people to available accommodation.
An example of government ineptitude and dismissal of the plight of the seriously ill and elderly on Groote is the aged care respite centre constructed there. It has eight beds and facilities for MJD sufferers and others, and it would be ideal for such patients to stay there overnight or even for extended periods, which would give all parties involved a much-needed break. But it is usable only during the day because there is no housing available for staff, who would have to be employed if it were a 24-hour facility.
When governments speak of taxpayer funds being spent on "priority housing", there cannot possibly be more deserving people in this country.
Gayangwa is vice-chairman of the MJD Foundation. The chairman is occupational therapist Libby Morgan, a non-indigenous woman who was raised by missionary parents on Groote and returns periodically from her Brisbane home to ensure whatever help is available is rendered to these souls.
She is every bit as remarkable as her close friend, Gayangwa, and is an outspoken advocate for help and facilities to be provided to the MJD sufferers throughout Australia's Top End.
Information for donations and support of the MJD Foundation can be found at www.mjd.org.au
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