MJD

Each weekday morning I walk down to Front Beach clad in Speedos ( now there is a scary sight!!) board shorts and  T shirt, sweat beading along the hairline and slithering south the moment  flesh hits humidity. Beneath the bat laden mango tree I watch  the thousand strong population vibrate, squeak and squirt a tarry black poo adding to  the soggy air smells of tropical vegetation and then there is a walk along the wave line where hermit crabs scuttle around in witch hat shells and  I watch out even more religiously for would be loitering crocs. Armed with zip lock bags the collection of sea glass, hieroglyphed shells and lumps of gorgeously shaped coral grows and daily I tread the paw printed sand…a dynamic duo of pit bulls… back to the Alyangula swimming pool. 25 metres of blue water, coconut palm shade and lounging chairs looking out on the Carpentaria Gulf I am often there on my own and sometimes sharing the pools with mums and children, bronzed toddlers confidant in  the paddling pool and leaping with water winged abandon into the warm water.

One morning as I loll in the shade with a book by the pool, two four wheel drives pull up in the car park. A young Aboriginal boy with long curly hair, aloha patterned board shorts and swimming goggles launches into the pool while an older man is pushed onto the grassy surrounds in a wheelchair accompanied by an Aboriginal woman who stretches out on a lounger in the shade and dozes, her arm shading her eyes, and a trio of non Aboriginal Australians wearing ‘rashies’ with the MJD logo. Short cropped hair, a smile as wide and glowing as a new crescent moon and Ray Charles dark tinted glasses the wheelchair man is helped from his chair into motorised chair lift that lowers him into the pool and the arms of perhaps a physio and they ease through a range of watery exercises and floating. The gentle immersion into which he sinks with an even bigger grin burying his face for what seems like a very long breath must surely provide the warm weightlessness it does for all who enter the blood warm embrace of the clear watered pool.

He is muscle withered and wheelchair bound and the victim of an hereditary neuro-generative disease, one of the family of neuro-generative diseases including Huntingdon’s Disease. Until 1995 this condition was known as Groote Eylandt Syndrome until the discovery of the  gene for MJD and Groote Eylandt Syndrome was confirmed as MJD.

So what is MJD?? Named, the M and the J that is, for the two families Machado and Joseph of Portuguese/Azorean descent who were two of the original families described with the symptoms of this  disease in the 1970s it is prevalent among people of  Portuguese/Azorean origin and in a staggering 1 in 140 on the Azorean Island of Flores and one can only imagine what that ratio is or will be on Groote with its tiny population.

It’s nasty and as yet untreatable and occurs because of a chromosomal disorder producing an abnormal protein which causes premature death in nerve cells. The cerebellum damage causes muscular weakness which progresses with time culminating ultimately in complete failure of voluntary control and a permanent physical disability. Children of those carrying the defective gene have a 50% chance of developing the disease and even more terrible is that the mutation expands when passed to the next generation…’the anticipation effect’…resulting in symptoms appearing 8 to 10 years early and more severe and so it continues. While travelling through the two main towns on Groote I see people in wheelchairs and learning more about MJD realise that the age of those people will be younger and younger with each generation. So how did this become a Groote Eylandt problem?? The spread of the disease to Arnhem land has been linked so far, though research and investigation continues, to the activities of Portuguese sailors who traded and sailed  to northern Australia in the 16th century and the trading relationships between the Arnhem Land  Aboriginals and the Macassans who in turn traded with the Portuguese. A centuries old story of twins good and not so good told the world over where trade and goods and ‘new technology’ is undermined by an invisble infiltrator.

‘The MJD Foundation is a charity, established in 2008 to seek to improve the quality of life for Indigenous Australian Machado Joseph Disease sufferers and their families in Arnhem Land and beyond’, and more can be learned at this link,  http://www.mjd.org.au  specific to MJD and Groote Eylandt and Arnhem Land and beyond.  Do read Gayangwa’s story about her life in a family affected by MJD and as a carer too and her speech at the MJD Foundation launch on the link..it really is inspiring… and how insidious MJD is and how it affects the families on Groote.

Back in the pool with the man with water bubbled hair, Ray Charles sunnies and enormous smile still in place has floated and waded in the pool supported by loving, caring hands and arms while watching the aloha boardshorted boy swim, dive and splash. This is my only opportunity to see the MJD Foundation at work in a tiny part of what they do but on one of our outings onto muddy pooled roads I see the blond bobbing ponytail of one of the pool trio running a similar muddied road through the country that has supported life for such a long, long time.

Groote Eylandt Communities pt 2

Now an attempt to explain the Aboriginal family system on island, information gleaned from and acknowledging the fascinating writings of Keith Cole who has written in depth about the Arnhem Land Aboriginals including those who live on Groote. Born in Sydney in 1919 he was ordained in the Church of England Ministry and spent 14years as a missionary in Kenya, East Africa and on returning to Australia spent his vacations among the Arnhem Land Aborigines before become founding Principal of the Nungalinya College in  Darwin, established in the early 70s the college aimed to further the material and spiritual welfare of Northern Australian Aboriginals.

Anthropologists suggest that the Australian Aborigines probably originated in Central Asia and migrated to Australia possibly as early as 35000 years BC and over many thousands of years developed over 200 hundred languages and dialects on the continent. As with many coastal Aborigines the Groote Eylandters ( I realise as I write this I don’t know the Aboriginal name for this island though they do refer to it as Groote Eylandt)were a maritime people and nomads of coastal beaches and bushland, the lifestyle dependant on the seasonal availability of food… fishing, hunting and gathering bush tucker in different areas as the different foods were available. Usually that hunting and movement was within clan territories and remained so but when food sources were  scarce with permission from the clan who lived there, they would move into another territory.

On Groote the ‘clans’ are divided into two moieties ,an  anthropological term for divisions or halves. Within each moiety there are clan names associated with particular geographical areas while the clan name comes either from that country or the name of one of their main totems. This goes too for personal names….. no Smiths or Jones amongst this mob but, lots of syllables, Ms and Rs, Ys and Js…and all island clans are closely associated with the Arnhem Land mainland and some with nearby Bickerton Island. Within the clan, their totem(s) and geographical areas are inseperable as are the ceremonies, songs, myths and art and the most literal and visual example I see of this is at Angurugu School in a painting on the wall where the two halves of  the painting illustrate  moieties, clans and their major totems. When Elayne takes me to visit the school the principal and her offsider are in preparing for the new term and warn us to walk carefully through the long grass, soon to be mowed, and look out for snakes! The school is closed up with drop down shutters glooming the internal building but walking  through, classrooms glow with newly polished floors, art and the  trappings of any classroom anywhere…posters, desks and shelves of books, paints and paper. Enrolments are high and attendance a moveable feast but the encouragement and enthusiasm abounds.

Back to the totems which seem to be the main subject matter of the paintings that adorn the walls of the Art Centre, the Dugong resort, school and panels at the airport and…. joyfully a little corner of my house!! The number of totems vary from clan to clan and while some are shared by more than one clan within a moiety they are not across the two moieties. These totems are not only the fish, birds, plants, bush animals and sea mammals…including the curious dugong, the sea cow, that grazes on underwater seagrass pastures ( now there is a vision to imagine to conjure with…) that appear the most obvious in the paintings but more ethereal, invisible and abstracted such as sandbars ,smoke and ashes,the all important winds…slabs of glowing, Rothko like colour…. sleep, night and a plethora of others that perhaps we take as a given.

 There is also what is referred to as a  ‘logical association’ that goes along with totems. For example clans sharing a ship totem will also ‘own’ associated  paddles, sails and ropes while those owning say the stringybark eucalypt will own the items made from that tree, coolamons…for collecting bush tucker…., canoes, spears and even animals and insects associated with that totems story. The Wurrawilya clan for example ‘own’ things associated with sweetness such as the wild honey and leaf  sap , food of wild bees and honey eaters . Fire Sticks too are amongst their totems..as I understand it a constant fire source carried at all times…. but because fire, smoke and ashes belong to a clan in an opposite moiety those totems can’t be shared. It’s so poetic and so grounding and connects people with their country, stories and songs.

When the Europeans arrived finding no identifiable surnames, clans names were taken as ‘surnames’ this was problematic as while the Smiths and Jones and of course Wilsons can be applied to a swag of people in a European tradition, in Anindilyakwa clan names change slightly determined by sex and connection of a child to the father’s clan name. Along with that comes connected totems, songs and stories and therefore  a woman doesn’t take her husband’s name which  would change her clan membership and associated totems. There is also the business of ‘poison cousins’, which sounds pretty awful but perhaps might be comparable in a loose way to Montagues and Capulets…and I may have this COMPLETEY wrong..ie never the twain will meet. If one ‘pc’ sees another, one should duck out gracefully but if it’s on say a bus, one sits at the back and the other sits at the front and if it’s in a meeting situation they will sit in different areas out of eye sight. All sounds very sensible!!

The clan and totemic system that links the clans on island also relates them to mainland tribes and the totems in particular determine and bind relationships between the people,  totems in the natural and even material world and the country they share and unlike the separated and isolating world of modernity no-one is ever abandoned or isolated.

So there we go, does it make sense?? Being a blow in on island, a great reader of words on paper and hopefully absorber of some of the essence of the locality, maybe it will give a feeling of the island and the people who live in this lovely country.