I am going to explore these questions first with some stories from my own involvement with community and community groups as a woman with disabilities. The stories, which span my early childhood through to adult life, illustrate the heterogeneous nature of communities, the goods, the bads and the uglies of communities. Their brilliance. Their brutality.
They are stories about the possible impact communities can have in supporting people or excluding them. The way they can make people shine and excel, or can add to their disadvantage.
An important question is what can community service organisations do to help develop communities that do the former rather than the latter - communities that are supportive, inclusive and preventative? I will explore this a little later on.
But first let's remember all of the communities we have all experienced since we were small children - for me that was long ago.
And the first aspect of community we are all involved in from when we are born are the informal networks, the neighbourhoods. And decades of research now shows that these informal networks are the ones that people in any kind of trouble call on for support - they are chosen for support long before any professional network.
Many of the stories I will recount here about my own community journey come from my book Just Passions:
Tears running down his face, fingers stuffed into the other ear, dad yells into the mouthpiece till he finds out I'm still alive. He slumps over the telephone, silent; as a staunch Jewish atheist he refuses to thank or curse anyone.
As he opens the door of the telephone box Mrs Muir is waiting. She is one of our neighbours. Good, he thinks, she's there to comfort me; the neighbourhood is rallying behind a family in trouble.
Mrs Muir holds a bottle of cheap, strong smelling disinfectant and a tea towel: 'I've come to wipe out the box - especially the receiver, she says. We don't want anyone to catch polio.' She begins to scrub at the mouth piece. My pugnacious Dad (a former bantamweight boxer) clenches his fist. Fortunately for her he doesn't hit women.
Other neighbours would keep their distance. My mum and dad were kept on many neighbourhood verandahs, forced to talk through wire doors; they would not be invited inside because they might be infectious. My dad's parents were gripped with the same fear: they didn't visit. They couldn't comfort the wobbly young family because they might 'catch it. My father runs down the street to the telephone box 20 houses away to ring up and hear whether or not I'm still alive. It's 1949, I'm deathly sick in Fairfield Hospital after the ambulance came in the middle of the night and whipped me away, and my mum and dad aren't allowed into see me because I'm highly infectious. This telephone box on a noisy main road is the only link between us.
These stories from my childhood about bad and good neighbours - about bad and good informal networks - are also about the existence or not of the fear that feeds systemic prejudice and discrimination. To take up the issues of discrimination and prejudice in neighbourhoods and communities requires community service organisations to genuinely operate with an emphasis on a human rights approach to welfare, rather than a charity-based one.
Do community service agencies have any responsibility and capacity to help strengthen neighbourhoods? What has worked and what has failed? And have we done enough over the last fifty years to change community attitudes?
You could all add your own stories to my story about neighbourhoods and their support - or lack of support - for young mums and babies. The media regularly provides stories about people not being found for days. (One woman was also found with a dead baby. Where were the neighbours? Is this concept of the supportive neighbourhood now dead, and if so should it be resurrected and what role do you as community services agencies have in this endeavour?)
Community groups - the lifesaving story
Communities are made up of neighbours, informal networks and more formalised community groups - groups where you belong.
And one such community group was the local yacht club which gave my poor struggling parents a place to belong. It also helped me to feel normal as anyone else at Elwood beach watching my father sail - crewing on seahorse class yachts with our family friends. Then my mum joined in and sailed a seahorse too. She and the women she sailed with won a race and the cup went up on to our mantelpiece. I loved it when my mum and dad recovered their spirits at the Elwood Yacht Club. They basked in being one of the group - and I had my kids' group. We all felt like we belonged somewhere - not just an isolated nightmarish foursome.
From ages five to fourteen, the four of us - my mum, my dad, my brother and I - would go away for the summer holidays to stay with my mum's cousin, Aunty Molly. She was married to Uncle Walter, a farmer, and their farm was in Devenish, outside Benalla in Victoria. My brother and I played with Rosemary and Robert, the children of Molly and Walter.
Every Saturday, the tennis or footy clubs were hubs of country community and the annual marathons were a very big deal.The women murmured together in their corner of the sports grounds under the big peppercorn tree. They'd sit demurely on rugs, while I'd sit on the outskirts and listen hard; I wanted to know their secrets. Tears slipping out of the corner of one woman's eye startled me. She was a friend of aunty. What's up with her? Rosemary would tell me later that the woman's hubby beat her up when he was drunk, which was every time he drove to Benalla to get supplies. Fortunately, this was only once a fortnight.
I would watch the women with acute interest, knowing they were giving each other the secrets of survival; she was staying with him because that was what women did. She had someone to tell so she didn't go mad. The Country Women's Association (CWA) was my Aunty Molly's salvation. She was a highly valued member - her jam, her sewing and her knitting are of a brilliantly high standard. She looked to me like the queen bee of the CWA. I watched Rosemary and tried to copy her seemingly instinctive knowledge about how to be a good girl. I, too, wanted to learn to be a junior country woman (a member of the CWA).
As a struggling little girl in a struggling family I kept joining community groups with a mixed reception and a mixed response.
On the long search for belonging I joined the Junior Red Cross group that a neighbour had started up. I loved wearing the red nurse's cape and hat with a big Red Cross on the front. We'd bandage our teddies and dolls and run around hunting for injured animals to bandage and swab. My puppy was swathed from head to toe; only his patient brown eyes could be seen after I had 'nursed' him with bandages. This was the first organised community group I'd ever joined, and I loved it. I thought I'd try another one; I was on a community group roll.
I then felt brave enough to join the Brownies. They accepted me without any comment on my disability and I learned a bewildering mixture of knots, sewing and how to make damper; I worked on earning my badges to win my wings to be able to fly up to guides. I felt that I truly belonged to the pack and to my little group of six - the pixies.
Brownies and Junior Red Cross helped me feel better at school. I was in two community groups and life improved. I even felt better at home with my family; I worked harder at school and stopped truanting.
That is until I was eleven years old when I flew up to join the Girl Guides. Then it all changed because the Queen came to Australia and suddenly we were all going to be part of the Girl Guide jamboree where the Queen would meet us. This was very exciting. I loved the Queen; she smiled at me from the books I was given for birthdays and Christmases, a beautiful Queen with a close, perfect family different from mine. I wondered how you got to be the Queen's daughter . . . I polished my badge and practiced my three-finger salute. I was prepared.
But I wasn't prepared for being ejected from my pack because I was a cripple. Unceremoniously I was sent over to the 'Guides for cripples' pack to prepare for the ceremony. It was excruciating, and now I hated Guides, especially the pack that had betrayed me. How could they do this to me? I got through the jamboree with gritted teeth, and when it was all over I was allowed to return to my own pack and took up smoking as a thirteen year old. I was angry and ashamed and I would now become a bad girl. Three weeks later I left the Guides for good. The community group let me down because it didn't accept me when it mattered. I started to engage in risk taking - and according to all of the research we have at our fingertips these days, if my community group had been able to continue to foster my sense of belonging, I would have had a much safer adolescence.
Despite the rejection and my reaction to that rejection, this was not my last association with community groups. As an adult in 1972 my engagement with community took on a different tenor with a new baby, in a new house in a new street, in the new suburb of Aspendale.
None of us had fences. Open plan was the fashion, and our community rigidly adhered to every fashion nuance. The good thing about no fences is our small children all played together unimpeded, setting up their own childhood neighbourhoods.
One afternoon I drove home from my part-time teaching job at the local tech school dying for a cup of coffee. I'd got into the habit of dropping in on Val, one of my neighbours, and an important friendship was growing. It had been a hard day. I really needed a neighbourly yarn. My daughter had a cold, the child carer hadn't turned up, my mother had reneged at the last minute and I'd had to scrounge a favour from a much put-upon friend. As a result I had started the day late to work and the classes were horrible; the kids seemed to smell my tension and irritation.
Val opened her front door, but there was no welcoming aroma of newly percolating coffee. My friend was in tears. I made the coffee while her tears turned to loud, hard howls, and slowly the story came out.
That day she had found the neighbourhood kids bashing up David, her son. He was disabled, and his disability made him uncoordinated, rowdy, and clumsy. And he was also highly sensitive. The little girls and boys had herded David into the end of the cul-de-sac and set upon him with sticks.
David was old enough for community childcare, even kindergarten, and we decided that getting him into something more supervised might be the best option.
Val approached the local community childcare group, but it refused to take him. 'He'll be disruptive' was the principal's response. The kinder wouldn't take him either; the other mums didn't want him because, they argued, he might contaminate their children and spoil their future opportunities. My friend continued to fight. She was relentless and brave, but she lost every battle.
It was then that I realised that Community groups are successful for those allowed to join, but a disaster for those they exclude.
Community groups by the thousands
The next part of the story is from my time at the Victorian Council of Social Service, (VCOSS), where in 1979 I stepped into the middle of a social movement built on community groups.
There was Reinforce, the first self-help group in Australia made up of intellectually disabled people themselves. Many Reinforce members had only recently escaped life-long institutional care and they had immediately come up against prejudice, finding that many neighbourhood communities were refusing to let them move into their streets. Property owners were worried that their property values would decline if people with disabilities attempted to cohabit nearby.
Similarly many neighbourhoods were wary rather than welcoming of the growing numbers of immigrants in the decades following the Second World War, so separate ethnic groups began to form their own clubs and groups. These groups then got together into networks.
And then there was the disability rights community.
A group of people with disabilities had decided that a new community organisation was needed to carry on all of our different campaigns. Most members of our network had severe disabilities, yet there was still abundant angry energy for the endless meetings needed to clarify our vision about setting up a new community group. This one we would all create together - a community to unite all of the disability networks into one powerful voice that would aggressively pursue a human rights agenda. And its most important feature would be that for the first time people with disabilities would run this community group. It would be run by and for people with disabilities.
We coined the phrase 'nothing about us without us' and this became the mantra for the embryonic welfare rights movement - welfare as a human right. The agenda: No community services unless consumers have a strong influential voice in the design and delivery of services; consumers on boards of governance for all human services.
And the self-help groups multiplied like a thousand flowers and provided the source of consumers to challenge charity - welfare as a right not charity - and to provide the voices for a community revolution. …. Oh what dreams we had!
This optimism was captured in my book, Just Passions:
COSHG became the place where groups united for a particular campaign for anti-discrimination laws. So the Seahorse Club united with groups that included Friends of the Earth, the Council for the Single Mother and Her Child, Parents Without Partners, Aboriginal Childcare Association, the Italian Historical Society (COASIT), the Unemployed Workers' Union, the Ethnic Communities Council, Community Childcare, the Residential Tenants' Union, the Aboriginal Legal Service, the Disability Resource Centre, and Australian Greek Welfare.
These groups fought both collectively and individually for community-managed community health centres, along with adequate public housing, decent, accessible public transport and electricity concessions. They agitated for law reform, and reforms included anti-discrimination legislation, class action for people locked away in institutions, adequate unemployment benefits and a single parent benefit without a poverty trap. Any particular social victory was always won by a combination of different (and usually oddly matched) groups. It was the early 1980s, we were young, and anything seemed possible.
Placed-based community
My education about community continued in the early eighties when I was running the Myer Foundation and the Sidney Myer fund.
The Community Health Centre was run by the impoverished community itself - they sat on the management committee (the Board). This Community Health centre then gave birth to other local community groups - these groups provided financial counseling and housing services, and a number of women's support groups sprang up to deal with domestic violence, education and employment. Mothers came to the women's groups, had their babies immunised, and joined in playgroups to share secrets about how babies and children might blossom and flourish, and about how to survive without killing your kid.
It was 1983 and the temperature was hitting thirty-eight degrees in the shade. I was tempted to postpone my visit to West Heidelberg and stay cool in my glamorous office with its thick carpet, its beautiful artwork. It was sometimes hard to leave the comforts of the Myer offices to get out into the community. The Health Centre had lodged a scrappy submission for a Myer grant to fund a youth theatre group, and invited me to attend a performance. I knew that I had to see for myself. But I was a hopeless navigator and I'd never been to West Heidelberg before.
Heidelberg had brought up images of the Heidelberg School, turn-of-the-century artists lounging on the Yarra River beneath beautiful willow trees. Instead, as I began to weave my way in and out of back street of West Heidelberg the fantasy fell away. I was in a war zone with dirty, dusty streets littered with every brand of rubbish - and none of it recyclable.
The sun was beating down, and there wasn't a tree in sight. Gates hung off fences in yards filled with broken down cars. Graffiti on the walls told the whole world to fuck off, and the artwork looked as though the street artists meant it.
With the help of a cigarette smoking group of kids wagging it from the local school I drove around the corner and came to a low concrete building; a dilapidated sign out the front announced that it was the West Heidelberg Community Health Centre.
Inside was very different. It was a hive.
A community, the CEO of the centre told me, is a place where a woman can comfortably stroll pushing a pusher with baby and two little kids loaded on the front, where she can find a community group to suit her, from sports, to arts, to self-help, to faith, to learning, to anything. That's what we've set up here, she said. This is what health means.
Most of the kids who lived in the area around the Centre ran wild. There was nothing for them to do. They were poor, often abused, persecuted by the police. They seemed uncontactable and uncontainable.
But here these same kids were putting on a show for the local community. They had written it, directed it, and were acting in it. And every line was about what it was like for them living in West Heidelberg. The audience members were drawn from the local community. They had come every afternoon after school for the advertised five-day season, and as the skits and stories continued to expand, the season was expanding too.
I was swept up with the enthusiasm of the audience as I watched the show; we all shouted and banged our feet. I found myself squirming as fun was made of poverty, unemployment, violence and despair. But everyone was laughing, and it was hard not to join in. I could feel the healing pouring out of the young cast members into the audience and out into the streets.
I thought, this is true dinks community and this is how you strengthen neighbourhoods.
Home-based community
My community journey continues into the nineties and now I am running the Victorian Health Promotion Foundation (VicHealth) - the first organisation to use the levy on tobacco to fund health promotion.
Towards the end of the 1990s I found Jack was dropping by less and less. I tackled him: 'Where are you these days?'
I discovered that Jack had abandoned me. He'd found our neighbourhood house, had gone down to learn computing, and at the age of seventy Jack had become a computer nerd. He was not only running computer classes for older women, but he was also opening up the house, and setting up a room for the play group for mothers and babies. Jack had transferred his affections.
One day Jack dropped in to see me with a sad story. In the 1980s a charity had supported the establishment of the neighbourhood house, along with some others; it had learned how much they could help women and kids. Now the charity was selling what had become a valuable inner suburban property and the neighbourhood house would be homeless.
The charity was selling up because they wanted the money to do their charitable work, but neighbourhood houses do community work - they prevent people from needing charity in the first place. Jack wanted me to get involved and give them a hand to sort this out.
I went down to the neighbourhood house and Jack introduced the coordinator and the committee of management. I was shocked to learn that the coordinator was employed for three days a week at a salary less than that of a first year teacher. She was running thirty groups; groups for mothers and babies, for fathers to learn about parenting, for old people to stop them getting lonely and depressed, and for unemployed people to get some skills so that they could get a job.
We implored the charity to reconsider. We failed to move them. After all of the change in the early 1980s, I realised that now in the 1990s the gap between charity and community was wider than ever. I started to wonder whether charities wanted communities to be strong, whether strong communities were seen to threaten their customer base.
Local government came to the rescue of our neighbourhood house. A place was found for it at the bottom of the primary school oval. The location worked out well, but Jack could no longer just walk down; he had to use his car to get there. Our neighbourhood house was no longer in our neighbourhood - we didn't have a local one anymore.
And people without cars or who couldn't drive couldn't go; they had to sit at home lonely and isolated. Others may have crossed the line and whacked their kids too hard (if they were young) or become quietly demented (if they were old). Now they did need charity to rescue them.
At the same time as my neighbour was fighting for community I was learning about the value of community to prevention of health and wellbeing risk factors.
In my last years at VicHealth I met Professor Len Syme, the father of social epidemiology from University of California Berkeley. He had undertaken groundbreaking research with mass databases that first established health as a marker for strengths and weaknesses in our social arrangements. This means that health status and the risk factors that compromise peoples' health provide a manifestation of the way we organise society, and by asking about health in society, we're asking about society itself.
Syme's research shows that communities that are strong and inclusive and that are in control of their own agendas prevent risk factors and support healthy behaviour - such as lower rates of drug and alcohol use, smoking, unsafe sex and higher rates of breast feeding, child immunisation, school retention.
Similarly, Professor Lisa Berkman, head of social health at the Harvard University School of Medicine highlighted the role community groups play in engendering a sense of belonging. She told the 2003 Communities in Control conference:
Professor Michael Marmot from University College London has shown that we all need a sense of control over our lives in order for health and wellbeing to be maintained and risk factors to be prevented. Marmot's research shows, for example, that 46% of risk of heart disease is caused by the common risk factors of smoking, lack of exercise and bad diet - 64% of risk of heart disease is caused by having a low sense of control over life.
And all three eminent researchers and many others show that community groups, at their best, support people to achieve shared visions, experiences and outcomes. At their best these groups provide the belonging, hope and sense of control. They are potentially the bedrock on which better societies will be built.
Why do we need to consider these questions of community rather than charity; of organised community groups as well as neighbourhoods; of inclusive welcoming community groups rather than rejecting, excluding community groups; of prevention rather than cure?
In part the answer lies in the incredible era of change and transition in which we find ourselves.
Australians - or at least white Australians - are living longer; the rich are getting richer and the poor are not. In other words there is more inequity.
Australians are moving to the cities (and now from the cities to the coast), having smaller families, living further from their work. Now men and women work, although women do more of the housework. Australians are marrying more than a decade older than they used to and having their first child more than a decade later. More young people as well as older people live alone than ever before.
Add to this the liberation movements that swept the world last century - they certainly brought significant freedoms. But as great as these freedoms are for many of us, they are still extremely anxiety-provoking for those who can't share in their fruits.
We can go online and volunteer. At the same time, there are fewer children in the street to play with. There is a constant drift to atomised individualism and an increase in social isolation.
Are things falling apart? Has anarchy been let loose upon the world?
No. When we're looking at these changes, the last thing I want to suggest is that they're all for the worse, or that we're falling away from a golden age of trust and community.
Our parents and grandparents definitely had more certainty and, they would say, more community, but would we want to go back to an era where dad went to work, mum stayed home, the kids were waiting in their pyjamas to kiss dad good night - mum with fresh lippie and dinner on the table? This was the same era when children with disabilities, or single parents, or Indigenous neighbours would be shunned and ejected from the very communities that are so eulogised.
We might want to go back to an era of job certainty. Although would we want dads only, never mums, staying in the same job all of their working lives?
I certainly wouldn't want to go back to communities that were valuable for those who fitted the norm ... and only those.
Nor would I want to go back to the days when parents started you off with your political allegiance, your religious persuasion, your football club, and your job, and you stayed there for the rest of your life - or left at your peril. On the positive side you could go out into the world knowing where you belonged. On the negative side that's where you stayed - forever.
And while we still may long for coherence and explanations, the old meta-narratives that helped us make sense of the world are no longer relevant. Church, family, gender roles, work and the nation-state - these are all in a constant state of transition, and they have been inextricably weakened. Fewer Australians go to church than ever before. Fewer belong to political parties, or unions. More live alone.
So what to do? If those informal networks can no longer be relied upon, where and how do we get a sense of belonging and hope?
Community groups
Sixty-five percent of us play a role in participative, community organisations that you join as members, friends, volunteers, and board or committee members. And as researchers like Professor Lisa Berkman have shown, joining up and joining in is good for us.
Participative community organisations at their best provide members with a third opportunity assuage their need to belong. They allow people to be in a group that can, at its best, work better than many families and workplaces.
Shoulder to shoulder, community group members design, advocate, play games, learn, fight fires, fight for rights, paint community halls, play bingo, look after the foreshore, plant trees, sing, put on theatre, celebrate, worship, support and volunteer - and at their best, they recognise and empower each other.
Are community groups a possible source of remedies for the alienation and uncertainty and upheaval that lie behind Australia's anxiety, fear and the hopelessness that are risk factors for increasing, indeed epidemic rates of mental illness, depression, alcohol and drug use, eating disorders and youth suicide?
I believe they are. I once supported community groups because I thought they were good. I'm now supporting community groups because these groups are good for us.
Yes, it's true; older adults who volunteer and who engage in more hours of volunteering report higher levels of well-being. People who sing in the choir live longer than those who don't - the research findings go on and on about the value to health and wellbeing from being part of a community group.
People who feel part of vibrant, healthy community groups are themselves more likely to see that they can contribute something worthwhile to that community. There's a virtuous circle where community groups build social capital and that pulls more people into community groups. And there's a vicious circle where the gearing goes the other way. Isolation is disease creating and it is contagious.
Where to with community groups?
There are some wonderful examples of creative, well-run community groups.
But to be frank, there are also numerous groups that are well on the way to becoming ossified, unfocussed, reactive and unreflective and worst of all, exclusive.
And of course, at their worst, we all know that community groups can still be inward, exclusive, elitist, hierarchical, racist, sexist, ageist, able-bodyist, and homophobic.
Despite the title of this lecture, I hope that I am not a romantic Pollyanna about community groups. As Groucho Marx famously said, I don't want to be a member of a club that lets in people like me.
I know thousands more stories than my own personal ones where people with disabilities, or from a different racial background, or who are poor, or look different, have been denied membership of community groups. Indeed there is a famous one of these with the name of your capital city attached to it. It still does not include women as members, along with many other minorities from our society.
If community groups are to go on holding up their share of the sky, community groups need to change, to innovate, and to think deeply about what they're doing. If these groups are together going to build healthy communities as well as healthy individuals they have to do something about including people from any and every background, race, disability, sexuality - they must become inclusive. They must promote justice and equity. And they have to build these values into every process and all their relationships.
Our Community
So this is why I've helped to set up Our Community, a support organisation for Australia's 700,000 community groups. In this role, I do nothing else but work with community groups, thousands of them.
I'm now observing in this sector a one-day-at-a-time, micro-scale ferment of thousands of community groups concerned with anything and everything.
In order to fulfil their unique role, we must support all community groups to become inclusive and welcoming, to reach out and include all people in the community.
In order to survive and flourish, community groups must be supported to expand, revive, refresh and diversify their participation.
In order to operate effectively, community groups need to attract more resources, more ongoing resources to support their core work. More concrete support is needed for community groups to be fully effective.
They need help to build their infrastructure and operating capacity -management, systems, equipment, shared resources, and of course governance - their boards and committees of management need to strengthen, vacancies need to be filled, new skills need to be brought on, while also maintaining community ownership.
In order to fulfil their destiny as the backbone of Australia's social infrastructure, community groups must be valued and respected - and this respect must be reflected in increasing numbers of Australians donating to them as individuals, philanthropies, governments and corporations. Donations are a tangible expression of the value placed on these small participative groups. After you leave this oration, go home and immediately donate online to these groups at the Australian Giving hub at www.ourcommunity.com.au. (This is Australia's only free donations service for you the donor and for the community groups).
And ultimately, in order for community groups to fulfil their full potential, we should support them to show the courage that comes from true leadership - to advocate for their issues, projects and ideas; to take risks, defend the unpopular causes and pioneer new approaches. Then they will generate the social change we so sorely need in our society.
Whether community groups succeed in providing the sense of hope and belonging that they are uniquely positioned to do will depend on how far they are accepted as one of the major and most realistic solutions to our epidemic of social alienation and despair.
The smallest community groups hold the key and what is missing in Australia as a nation is a coherent social policy that focuses on the value of these participative community groups.
What is needed is an Australia-wide social policy that acknowledges the central importance of inclusive, participatory, diverse community groups - and to be more than rhetoric, such a policy needs to give some indication of how they will be supported.
Listen to Arundhati Roy on community in India. She could be talking about community groups here …
At a time when individuals are isolated and individualism is everything; when hope seems lost, we must find the courage to dream and to reclaim romance.
The romance of believing in justice, in human rights, in freedom and in dignity.
That's the romantic sense of community that I want to support and join.
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