Janne has been an important leader in the development of the health consumer movement. Her advocacy grew out of her own experience of illness and disability and she became Chair of the Consumers Health Forum when it was still a relatively young organisation. She believes that working alongside other people and learning from them was an important factor in allowing her to step up to a leadership position.
Janne Graham was born in December 1938 in Sydney where she grew up. She was an only child and one who was fairly indulged. During the war, her father was in the home defence and involved in scouting. Her mother was a dressmaker who worked from home. After the war her father tended to go away to work, and Janne thinks he did not always send money home. She went to the local school but she was not a good student – she was disappointed with it from the first day and she didn’t like the discipline.
Later, she went to North Sydney Girls High, a selective school where it was assumed that everyone would go on to university. She was still not a good student, and her Leaving Certificate pass was minimal for matriculation However, she got a scholarship with the Department of Child Welfare, which is what she wanted, and did an arts degree with them. In the holidays she was required to work with the Child Welfare Department across a range of welfare activities. At the age of 19/20 she found herself going into homes that were beyond her comprehension – dirty nappies soaking in baths for weeks on end, grime, kids unfed and very recalcitrant teenage girls and court cases.
After finishing her degree she was bonded to the Child Welfare Department for 5 years. She wanted to leave home so applied for, and secured, a position in Canberra, then a rural area serviced by the NSW Department. It was the first time a woman had been appointed to a rural area.
In Canberra, Janne lived in a Commonwealth hostel, and enjoyed the active social life that it offered to young people moving to the new city. After 3 years, she moved to Perth with the intention of working for a while and then working her way around northern Australia. She became the first female parole officer in WA, which was exciting but much easier than child welfare.
Two weeks before leaving Canberra Janne met the man who would later become her husband. In 1966 she moved back to Canberra to marry Ron. They agreed not to have children of their own, because he had two teenage children who had been in his care since they were young. Janne got on well with the children, and still retains a close relationship with them, their children and grandchildren.
Janne joined the Commonwealth Public Service working in social planning and welfare policy, but in 1974 started having pain and difficulty in movement. This continued for over four years, during which time no diagnosis was made. Eventually it was decided that she had rickets – a bone softening disease –and she had to use a wheelchair in order not to put weight on her bones. She was invalided out of the Public Service in 1979. At that time preparations for the International Year of Disabled Persons were under way, and Janne became involved. Her interest in welfare issues had led to an involvement with the Council of Social Services, and she was also working on a very part time basis for ACROD – the Australian Council for Rehabilitation of the Disabled – when her pain allowed her to work. From there she became involved in the health consumer movement.
In 1981 the cause of her illness was identified –a tumour leaching phosphate from her bones was located in her ethmoid sinus and removed. However, while she was cured, the illness had left her with significant physical disabilities and pain. The pain lasted until 2009 when both of her hips were replaced. She still has significant damage to her body but has mostly recovered the self-esteem that was badly damaged during the period of her illness.
Janne describes her experience of the health system as being both at its best and its worst. While some of the medical care was of high quality, the lack of regard for her as a person and of the pain she was suffering caused considerable distress. “ It was as powerless as I had ever felt” she says.
Her experiences and the encouragement of a good friend, motivated Janne to become involved in the Health Care Consumers’ Association of the ACT and that was the start of her advocacy on behalf of health consumers.
As Janne’s health recovered, her husband Ron suffered a relatively mild stroke. However, he didn’t ever really get well again. His treatment led to him becoming hyperactive and behaving with uncharacteristic recklessness. It took a while for Janne to realise that this behaviour was due the medication – cortisone.
Ron lived for another 10 years, but his condition slowly deteriorated. As Janne cared for him she saw a number of mistakes occur in his treatment – and was angered at the lack of regard given to him and to the concerns she raised.
In the last year they were about to give him a lumbar puncture. I arrived as they were getting the tray ready – and I pointed out that they couldn’t do that because the cortisone he was taking would mask anything that you get out of a lumbar puncture. They told me he had given consent, so I went and talked to him and he had obviously had another stroke – he didn’t know who I was, let alone who he was so I told them they shouldn’t do the lumbar puncture and they took the tray away and when I came back the next day they had done it – and he went into a coma three days later.
Janne had survived a long period of pain, distress, and a lot of anger. Mostly she felt anger – over her own distress, her changed appearance, and the way that Ron was treated. That anger turned into a constructive energy and has been channelled into the health consumer movement. Janne has emerged as a highly respected, articulate and effective representative of health consumers.
Looking back, Janne says that the anger was useful. It gave her an energy which enabled her to say that there is stuff that is wrong – for herself and for other people. She had a sense that change could be made and that she could help bring that about. She knew that it was the systems which needed to change. What she had learned in welfare was that it was futile to punish people for neglecting their kids, what needed to change was the environment, so that it was possible for people to manage. She applied this learning to the health system.
In 1987 representatives from consumer and community organisations, with support and assistance from the Commonwealth Health Minister, Neal Blewett, set up a fledgling national organisation to represent health care consumers. When the organisation was 18 months old, a friend persuaded Janne to stand for a position on its Board. She stood successfully, and was then elected as the Chair. She embarked on a steep learning curve.
As she dealt with some of the problems in the organisation, Janne felt a great sense of responsibility for it – but was inexperienced in dealing with internal problems or in being the public face of an organisation. However, she felt a strong sense of ownership of the organisation, and recognised that others owned it as well – and that is what gave her the strength to lead it. In the end, she says, she just had to get in there and do it.
The new organisation representing consumers was not welcomed by the powerful vested interests in the health care landscape. One of Janne’s tactics was to tackle the opposition from professional and industry groups head on – using the logic of the argument and battering the ramparts down. Another was to form alliances with other players who felt relatively powerless in some situations and who too wanted change. She describes it as being “not very different from social planning when you are trying to persuade engineers that people mattered as well as streets!”
Janne had initially been sceptical about the new organisation, feeling that it was formed using a top down approach, rather than something that actually grew out of the community. She worried that all the groups which came together under the CHF banner would all be fighting for their little bit of the pie. However, the groups united around a number of common concerns, and this provided Janne with the strength to lead the organisation for a second term.
At this time Janne was balancing the demands of the growing organisation with the need to care for an increasingly unwell husband. He was ambivalent about her achievements. He would tell her friends and colleagues how proud he was of her but it was clear to Janne that he resented her increasing commitments and absences from home. But she knew that she was not ‘martyr material’ and that her staying at home and ‘not doing these things would not have served either of us very well’. She put support systems in place for him, but continued her leadership of CHF.
Under her leadership the organisation’s reputation grew. Its influence on the policy agenda increased and it gradually earned some respect from the professional and industry groups that had traditionally dominated policy discussions. However, after 6 years as Chair she felt that she needed to take some time out – both for the good of the organisation which was in danger of becoming too dependent on her, and to refresh herself.
While she stepped back from the leadership of CHF, Janne continued to play a leadership role in a major policy area. She had been a member of the Australian Pharmaceutical Advisory Council which was developing a national, consumer centred policy around access to and use of medicines. She found that being Chair of CHF had given her standing and authority within this Council, and ultimately the Minister appointed her as Deputy Chair – a significant achievement for a consumer representative at that time.
Janne was clearly an important leader in the development of the health consumer movement. She remains an active and influential activist. As she reflects on her experiences she identifies working alongside other people and learning from them as being an important factor in allowing her to step up to a leadership position. She learned about team work and using the resources that other people had to make something work. People in the disability movement influenced her early thinking, then later in the health consumer sector a number of people were helpful in encouraging her and in teaching her to focus her thinking and her actions.
One of the lessons she had to learn was dealing with internal differences and groupings. She emphasises the importance of keeping herself above that and needing to trust to good process to sort things out and make good decisions. When she didn’t do that, she says, things went wrong.
Janne has a sense of achievement – of helping to bring about the changes which will make the health system more focussed on the real needs of the people who need it.
In 1996 Janne’s leadership and effective advocacy was recognised when she was awarded an Order of Australia – an award which should found personally gratifying, but which she also sees ‘as a real statement about the movement’.
Profile by Kate Moore