NIGEL Brown died on February 24, 2011 at the age of forty-two; eight years after he chose North West Residential Support Services (NWRSS) as the service to, as he put it, break me out of a hospital life sentence. Paralysed from the neck down; unable to breathe without mechanical assistance; morphine dependent for chronic pain; supine for most of his days and, at best, uncomfortably strapped into a chin-controlled electric wheelchair, he was the most difficult person the service had ever supported. But, by that, I don’t mean the physical support he required. That was the easy part.
Nigel refused to let dependency break his spirit. He demanded his rights and life style preferences until he got his way. He became a powerful reminder that the compliance and satisfaction we believe we see, in so many of the people dependent on support services, may actually be the manifestation of broken spirits.
I began thinking that NWRSS might help get him through a couple of years at best. But, he defied every prognosis and lived many years beyond what was supposedly possible with his complex condition. He was rushed to hospital on numerous occasions to cling for days to the faintest thread of life and emerge as he would say “pissed off” about the lost comatose days and, against all medical advice, demand to be taken home.
We are all bound together by the currency of opportunity, living on the chances we give each other. In the arts, inspiration creates opportunity. Difference, by way of disability, can be a rich catalyst in inspiration. Nigel inspired an opportunity that gave him the chance to contribute to an award winning film and set other production team members on paths to further acclaim.
In a bedside discussion on September 10, 2010, five months before he died, Nigel laid out his plans to use the few hours he could manage each day to work his computer with a mouth-held stick, to create and direct another film. This film, to be called No Hands, and set within the confines of his room which he could no longer leave, was the sort of challenge that can create a cinematic gem. Sadly, time ran out for Nigel and he died before production could begin.
NWRSS HAS DABBLED at the edges of the arts for many years providing time filling, in-house support and material for people to follow, mainly solo pursuits like drawing and painting.
Peter (Sarge) Sargison, a man without arms who paints with his feet, made it to the walls of restaurants that provide gallery space for local artists. Alison Symes, a lady who cannot read or write but has a flair for word play, memorizing and reciting her poetry, published a book of her work in 2012. While these events, and many others like them, were exciting achievements, they were disability events. Interest was more a courtesy than a serious exploration of their work, its meaning and place within the arts. People like Peter and Alison, typically remain as “outsiders” on the fringes of the arts community.
While localised arts activities are very important to the tapestry of small communities, it is worth considering whether some people miss out on a more direct connection to, and involvement in, the broader arts community. Impediments include (1) low expectations, including believing that the person’s talent could never stand in its own right within the arts (2) no knowledge of the entry points into the arts and how they could be approached for people with a disability (3) keeping arts limited to simulated short term, tokenistic exercises for people with a disability or (4) believing that callings to creative roles do not happen to people with a disability.
NWRSS’ first serious attempts to connect people into the broader arts community were driven by the unmet aspirations of people they were engaged to support. For one person, the need was to find a meaningful direction for an interest with artistic possibilities and, for another, find an entry point into the arts for obvious talent. These two challenges would become entwined in the best artistic traditions of creative collaboration.
WHEN I FIRST met Paul Corfiatis his identity was unfairly cloaked by the characteristics of his autism. He was seriously misunderstood and, as I was to learn later, struggling to find an outlet for hidden artistic talent.
Before moving to Tasmania from Adelaide in 1995 Paul’s creativity was trapped in an obsession with trains. He had recorded to memory the details of every train that passed on the busy suburban line that ran past his home. He could identify the number of each train by its unique sound pattern before it came into sight. He loved travelling on trains and immersing himself in the symphonic sound patterns that fill a speeding carriage. This was a seemingly useless autistic trait to many, but his mother had begun to wonder whether his early brushes with music could be expanded through this amazing relationship with sound and timing.
While writing this essay I was able to draw from Paul’s published autobiography, My World, one of the fruits of his journey in this story.
“From a young child I knew I could write music. I used to bang on the cupboards and use them as a percussion instrument and record them on to cassette and I used to hum stuff out of my mouth but the technology wasn’t that great back then.”
My World – Paul Corfiatis
When Paul and his family requested that NWRSS manage his government funded, Individual Support Package he was locked into the traditional approach of a few hours per week, directed solely at domestic support or basic community access. Paul was restlessly searching for something, and he was quite clear that it was not help with meals, house-keeping or getting to the shops. His drive was artistic, not domestic. He was becoming depressed as his self-determined needs were continually being ignored.
With the assistance of his mother, Therese, he got his first glimpse of hope for the artistic life through a small grant from Arts Tasmania in 2001. This grant helped him record Dripper ̶ Destruction, the first CD of his original music.
But the arts are not taken seriously enough by disability support funding sources as work or for the esteem and personal stability that involvement in the arts can bring to a person’s life. To continue Paul’s journey towards the arts we were going to have to fashion the use of his funds in non-traditional ways to meet his unique needs.
Punting on the possibilities of music, we ignored the domestic direction and used his funds to employ a musician to explore music with him. Paul relished this opportunity as a way to understanding how the music and sound effects in the computer games he was playing had been created. He and his music mentor quickly moved from instruments to the computer and opened the doors to electronic music and the Techno-Trance genre that he would later excel in.
His funds were also used to purchase weekly sessions at a local recording studio, Total Audio Productions, where, working on his own creations under the tutelage of the studio’s sound technicians, he quickly mastered the equipment to produce complete thematic CD’s of his own work, including all of the art work on the covers.
However, Paul was soon expressing frustration with where he was going or rather, not going. He wasn’t happy creating just for himself when his drive was towards performance. We had to find a way to move him towards the public arena.
We need, here, to go back to Nigel. We need to ride his roller coaster between disability and creativity that eventually crossed paths with Paul and led him to public recognition.
FOR PEOPLE BORN with a disability, support is concentrated on gaining the essential elements for a meaningful and comfortable life. Aging brings, for all of us, the struggle to retain the things that have made our lives worthwhile and enjoyable. An unexpected accident or illness, resulting in an acquired disability, can rapidly strip away all the things that have held a life together and leave what remains in a heightened state of vulnerability. The struggle, with an acquired disability, is to stem the losses, regain where possible, and replace if necessary.
When the elements of a fulfilling life have been damaged or destroyed they need to be carefully attended to in a sequential manner if they are to hold a life together again.
Nigel’s losses began when an aneurism, at the age of thirty-five, rendered him completely paralyzed from the neck down and dependent on a ventilator to breathe. Nigel came to NWRSS’ attention after four years of in-patient hospital rehabilitation. During this time he had developed a detailed knowledge of his quadriplegia and the interventions needed when his health showed signs of failing. He understood the reasons for the physical pain and health threats he now endured.
NWRSS’ role was to provide a team of support workers chosen and trained to provide personal care, monitor his life support system, develop and maintain his home, and help him rebuild his life. Training included learning to help Nigel remain aware of any physiological signs that indicated his need for medical intervention to arrest any health regression. The common cold, to Nigel, was life threatening.
Although the hospital tried, during his four year stay, to be as “home like” as possible, Nigel was, in fact, homeless. He had lost the pivotal base for rebuilding his life.
Between the provision of a purpose-built public housing unit from Housing Tasmania and personal support funding from Disability Services, he was able to create a home from which he could attend to his many needs. His new home had the security, privacy, space and freedom for containing a personal, family and social life.
Some of Nigel’s functional losses along with years of confinement in a hospital had ended some personal relationships and was severely restricting and threatening others.
His marriage broke up within a couple of years of his hospitalization and his children had become only occasional visitors. Virtually everyone but his parents had been driven away by the restrictions of the hospital environment.
Helping Nigel maintain his home included caring for his two primary school aged sons, without usurping his parental role. As his home developed, his two young sons started staying over. His parents, finally freed of their fears of a hospital-bound life for their son, returned to natural family routines, roles and activities. For Nigel, unpaid, freely-given relationships were an important source of assistance with lifestyle choices that were beyond the protocols of paid support. By enriching the sense of home, natural friends and family began finding their way back into his life. Nigel became an active parent again with his children taking notice of, and learning from him.
He was formally involved in the selection, training and management of his support team and his opinions were taken seriously and acted upon.
We had helped change his identity from eternal patient back to citizen by retrieving some lost roles and providing opportunities for new ones, to expand his sense of purpose and importance.
The only activity that Nigel could follow with any semblance of independence was the operation of a computer. He had achieved this, one key at a time, with a stick in his mouth.
With the time he had to concentrate on this interest he had become very knowledgeable about, and skilful in the use of a computer and internet technology. Although the internet and e-mail had become primary avenues for communication, he was not being challenged with opportunities to work and express himself through this medium.
However, while in hospital he had begun to explore the computer as a means of making films. He had, with a small camcorder attached to his electric chin-controlled wheelchair, secretly (and probably illegally) filmed the hospital environment. He relayed these images back to his computer by wireless connection and created small film clips by editing and adding music. This interest in film making was something that could be expanded.
Because of the formal influence NWRSS gave him over the choice of support workers, Nigel had gathered an interesting team with a diverse range of backgrounds, interests and skills. Within this support team he had a computer technician, an actor, musicians, and others who were of similar age and interests.
ONE OF NIGEL’S support workers, Tel Rodwell, who had an acting background, became aware of The Other Film Festival, an international event hosted in Melbourne each year that is devoted to “new cinema by, with and about people with a disability”. It was put to Tel that he use his skills and film-making knowledge to work with Nigel in making a short film for entry in the festival. He was given permission to invite other support workers into the project and use work time, much of which was going to passive health monitoring, for the making of the film. Professional filming and editing equipment was purchased and Nigel, directing the computer technician, built a computer dedicated to the film editing program.
Before meeting Nigel, Tel had been working on an idea for a film about gang crime. His encounter with Nigel steered this story to a group of robbers that get more than they bargained for when their victim, a computer hacker, turns the tables by drawing them into his cyber dimension, taking control of their lives and holding them in a virtual purgatory. Casting Nigel as the hacker, with this level of control from a position of total physical paralysis, heightened the exploration of vulnerability and control.
Hundreds of voluntary hours were added to work time, ideas developed into a script and story board, and the film was shot and edited over a period of three months. Nigel collaborated on all aspects, including generating ideas, writing, acting, editing and technical trouble-shooting. Support workers doubled as actors and film crew. Apart from Tel, this was the first arts experience for all of them. Locations were as varied as a pine forest at night, to a hold-up scene at the front door of Nigel’s unit, which looked so real to a neighbour they had to be stopped from contacting the police.
The film became a parody of support worker life with Nigel as he sometimes used secretly-installed video surveillance systems in his unit. To go to work in Nigel’s home was to submit to his control. He created an unusual reversal of power in a human service sector where, traditionally, the service provider holds the upper hand.
The film project became an obvious opportunity for drawing Paul Corfiatis (remember Paul, still back in the audio studio without an audience?) into the production team. He was introduced to Tel, who commissioned music for the sound-track. While working with this team, Paul’s natural high level of curiosity drew him to try editing, and he soon mastered the editing software and started using it to create video clips for his music.
Finally, The Toy Tub was entered in The Other Film Festival where it was accepted for screening as part of The Other Program which focused on emerging Australian filmmakers.
Tel, and one of Nigel’s support team, took Paul to Melbourne to the screening at The Infozone at the Melbourne Museum. Unfortunately, Nigel could not get to the screening because the logistics of mobilizing his support team and life support system for a Bass Strait crossing was not possible at such short notice. This was Paul’s first trip without direct family support. He was acknowledged at the screening for his contribution and realised a dream of hearing his music from the big screen in front of an audience.
Tel and Nigel won first prize in the category of emerging Australian film makers and The Toy Tub went on to be screened again as part of the National Film and Sound Archives, Big Screen Film Festival.
Nigel, through film making, discovered a way to exhibit his skills and find the friendships that grow from creative interests. His children shared this interest in film making which became an important bonding activity and introduction into the arts for them.
From the overnight loss of virtually everything that held his life together, something was either retrieved or substituted in each of the critical life areas towards a meaningful place in the world.
RIDING ON THE back of the success of The Toy Tub, Tel and Paul were approached by the University of Tasmania to make a film promoting the value of including people with a disability in the workplace. The resulting promotional DVD, Employing People with Disabilities, visits integrated work places with interviews from both employers and employees. Paul, as the sound engineer for the film, was able to demonstrate his employability in the arts.
Paul’s creativity and production skills had become very obvious through the making of The Toy Tub. People had learnt how to approach Paul with creative opportunities that matched his work style. He preferred his commissions to be broken down into small packages with clear directions and expectations. A typical response from Paul would be, ‘I can’t possibly get that done within two weeks,’ only to find it delivered exactly as required a few days later!
In 2000, while he attended acting school in Sydney, Tel made contact with Tasmanian-based, national arts company, BIGhART. BIGhART connected him with a mentor for the duration of his acting course. After the success of The Toy Tub, Tel was offered work with BIGhART as a youth support worker and film maker. One of his responsibilities was to continue to mentor Paul, assist him to take up commissions, and participate socially within his production teams. NWRSS began contributing some of Paul’s support funds to Tel’s wage, to formalise the support expectations. However, Tel quickly dropped the paid support role for a close, freely-given friendship that grew around their mutual artistic interests.
BIGhART’s production, Radio Holiday provided creative opportunities for Paul. He scoured seaside locations with his audio recorder for the sounds he needed to mix with his own music, in his home studio, to create the required soundscapes. This work went on to be used in another production, Drive in Holiday, in which Paul also worked on film sound recordings and soundtrack editing.
During his school days in South Australia, Paul was deeply scarred by being misunderstood and expelled from the South Australian education system in 1993. He and his mother went on to fight this injustice. They finally won and true to their integrity, accepted the apology but rejected the offer of monetary compensation. School environments, while providing some pockets of enjoyment, had been mainly painful and embarrassing for Paul. The partnership between BIGhART and Wynyard High School that created Love Zombies, a musical involving the entire school with social inclusion as one of its main aims, was a perfect vehicle for Paul to redress some of this hurtful history. Paul entered the school campus as a professional, attending production meetings with the Principal and teachers. He found an exciting acceptance by pupils who admired him for his ability to convert the Burt Bacharach songs into the dance genre at the heart of their youth culture. His remixes, which were an integral part of the production, were down-loaded by students as mobile phone ringtones and used as the alert sound on the school PA system. He was, at last, able to put some of his painful school experiences to rest.
An ongoing string of BIGhART events continued to use Paul’s talent and skills, including the 2010 Wynyard High School production, Two Strong Hearts for which he remixed a number of John Farnham’s anthemic hits for the show.
TEL, WITH THE kernel of an idea on rites of passage and resultant risks for young men, started working in BIGhART’s Lucky crime prevention project. He joined with Bronwyn Purvis, another Lucky director, to work with a group of young men to develop a series of short films exploring the relationship between young men, motor vehicles and risky practices such as excessive alcohol consumption and speeding. The young men worked with arts’ mentors in the film making process, taking on roles as camera operators, sound recordists, interviewers and editors. These early films led to the production of a documentary made by, and about young men coming of age on the North West Coast of Tasmania. By following the stories of young men and the grief lines they left after dying in tragic single vehicle crashes, the Drive documentary explores the two major rites of passage of young men; obtaining a drivers licence and the legal right to consume alcohol.
Tel and Bronwyn commissioned Paul for soundscapes, soundtrack music and film editing. Paul, in the BIGhART tradition, was mentored by Sound Designer, Leah Katz, who was engaged to work on the film. Paul was credited in the film as Assistant Sound Director.
He required no help with these commissions and took them home to work on, as he preferred, alone and often late into the night or in the early hours of the morning. He was an integral part of a production team. However, his strong desire for social acceptance and inclusion in the extra-curricula activities like coffees, meals and parties posed challenges of an almost insurmountable nature for Paul and his autism. But patience and acceptance saw his life develop into a rich tapestry of work and play in the arts.
The final documentary that emerged from this project gathered the following accolades:
- Prime time screening on ABC 1
- Finalist ̶ Australian Directors Guild Awards 2010
- Official Selection ̶ Buster, Copenhagen International Film Festival 2010
- Finalist ̶ Foxtel Documentary Prize, Sydney Film Festival 2010
- Official Selection ̶ Melbourne International Film Festival 2010
- Winner ̶ The Accolade Film Awards 2010
- Official Selection ̶ Korean International Documentary Festival 2010
- Finalist ̶ Australian Teachers of Media Awards 2010
- Award of Excellence ̶ Indie Film Festival, California 2010
- Special mention – F4 Film Festival, Australian International Documentary Conference 2010
- A National Crime Prevention Award as part of the Lucky project 2010
The highlight for Paul was seeing the film receive an enthusiastic response from a full theatre at the Sydney Film Festival and, of course, watching his name as Sound Assistant come up on the credits. Paul could now rightfully lay claim to credentials for composition, editing and sound design.
THIS JOURNEY BETWEEN disability and the arts has changed organisations as well as individuals. NWRSS has learnt how to connect into the arts community. BIGhART’s commitment to “outsiders” now has a disability dimension. This partnership is now an ongoing search for opportunities to support talent at an individual level and challenge the community on how it sees and values human difference.
If there was ever a community sector that should understand the value of difference it is the arts community. Difference is the essence of artistic creativity. Positive acceptance of human difference is the pathway to inclusion for marginalized people.
Arts productions, with their need for a wide variety of people with differing skill sets, are ideal for the customized jobs that can be built to bypass disability. And the arts community, with its historic acceptance of eccentric behavior, is in a prime position to broaden its embrace of difference to include disability.
So, how do we help people maintain an arts identity? We should help them keep company with artistically inclined and interested people, go regularly to arts events and gatherings, recognise and address them by their arts identity and engage the best of our artists to mentor and help embed their work in the arts proper.
Arts funding submissions should, as a matter of course from now on, address the longer term issue of belonging.
And what of the continuing winning streak that started with Nigel? Paul continues to be involved in regular arts productions. He has returned to art classes to work towards an exhibition of his graphic art. Another grant was secured from Arts Tasmania to help him perform live, in a webcast project with the Wynyard High School, and create a show reel of his music and videos as a next step towards securing a gig at a musical festival. Peter (Sarge) Sargison, working with artist, Rebecca Lavis, is creating autobiographical zines and selling out in regular exhibitions of his paintings and prints. With the help of musician, Kim Bush he is realizing a lifelong dream of learning to play the slide guitar with his feet.
wire mesh in my tummy
steel rods in my back
gall bladder gone
steel pin in my leg
paint brush in my toes
Peter Sargison – From zine #5 2012
Alison Symes has just completed a book of her poetry.
Get it down to a fine art
That’s a good place to start
A collage here
And some shell work there
That’s fine art to me
Alison Symes – Poetry & Art 2012
Bronwyn Purvis, co-director of Drive became a Producer with ABC Open in Tasmania’s North West. Tel Rodwell went on to make films with young indigenous people and conduct song writing workshops with indigenous prisoners in the Pilbara region of Western Australia as part of BIGhART’s Yijala Yala project. He is now in London recording his first solo album and, through the Coins Foundation, mentoring young disabled people and travelling to document the foundations work on poverty and injustice in Haiti and Africa.
Neal Rodwell 2012
This article was posted on 21/1/14.