As a child, Anne McKenzie was strongly influenced by her grandparents who were active members of the local community. Anne left school at an early age, and is the mother of four children, one of whom was born with a disability, which led to Anne having extensive dealings with the health care system. She learned that she had to stand up for her daughter, and herself, and has used that experience to improve the experiences of other carers and health consumers.
Anne McKenzie was born in Perth in 1951 – the only girl in a family of four children. She was only 10 when her parents separated. Because her mother then had to work to support the family, Anne and her brothers spent a lot of time, including all the school holidays, on her grandparents farm 160 kilometres south of Perth. Both grandparents were active members of their local community and this had a strong influence on Anne.
After attending a couple of primary schools, Anne went to high school. However, at the end of the third year she got a job and refused to go back to school. She got married 15 months later, when she was nearly 17. Forty four years later she is still married to the same man. They have four children – two boys and two girls.
Religion has played an important part of Anne’s life and she believes ‘in a higher power’. She was raised in the Anglican tradition and attended church regularly until she got married. Her husband was not particularly interested in religion, but they did have a ‘stint’ where they became Seventh Day Adventists for a few weeks, but Anne smoked and liked tea and coffee, and didn’t want to give any of that up. They then became involved with the Church of Christ but over time became disenchanted with what Anne describes as the hypocrisy in organised religion – ‘that it was OK to be nasty to people, but for everything to be alright because you went to church on Sunday’. She had been bought up to believe that ‘you had to treat people in the way you wanted them to treat you’.
Anne has always been in the paid workforce, except for a short period after the birth of her youngest daughter, Emma, in 1979. Emma was born with spina bifida and Anne gave up her job and didn’t resume working until Emma was nearly four.
The family were living in the country south of Perth and Emma was born in a country hospital. Her daughter’s condition meant that Anne had extensive contact with the health system and she learned how difficult and stressful it could be. Because the family lived in the country and her husband was busy establishing his own business, she would frequently have to drive Emma to hospital appointments in the city accompanied by the other three children. She would arrive at the hospital with four unhappy children, only to find the appointment had been cancelled or delayed.
From the time that Emma was born, Anne learned that she had to stand up for her daughter’s rights within the health care system. Emma had had an operation when she was only 19 hours old, followed by another to close the lesion on her neck 8 days later. Anne recounts how, one day while she and Emma were still in the hospital, a nurse informed her that they were going to X-ray Emma’s knees. Anne still did not know much about spina bifida at that stage, but questioned what why they wanted to X-ray her daughter’s knees . The nurse responded that there was nothing wrong with Emma’s knees but that they were doing research on the knees of all spina bifida babies and that she had to be X-rayed. Anne remembers standing with her hands on her hips, refusing to allow her baby to be exposed to unnecessary radiation. This was followed by other people coming to see her to insist that her baby be X-rayed, but she continued to refuse.
Anne says that everything was a battle, all the way along the line. This was the late 1970s and early 1980s and Emma’s parents were given very little information about what lay in store for Emma. They were constantly told ‘we’ll just have to wait and see’. This was hard for Anne who says she is ‘not a wait and see’ person’.
Emma didn’t walk until she was about 3, and Anne was having trouble toilet training her. She had successfully toilet trained three children, so she sought advice, and eventually saw a urologist. He suggested that Anne see a psychologist, as, he suggested, she obviously needed psychological help. Anne remembers standing up, with Emma on her hip and telling him that he ‘ought to try taking Emma home and toilet training her himself – and not to make his wife do it’. She forcefully pointed out that Emma was one of 4 children – and she had toilet trained the other three. She slammed the door and left. Twelve years later, when Anne started work as the Parent Advocate in the same hospital, the urologist said to her that he didn’t know how she could be the Parent Advocate, all she would do was teach people to slam doors!
Difficulties with the health system continued throughout Emma’s childhood. Emma had about 20 operations by the time she was 16. Anne was working full time when Emma went into hospital for yet more surgery when she was 12. The hospital told Anne that Emma would be in there for a week, and so Anne made her plans accordingly. However, when Anne visited Emma a few days after the surgery the hospital told her that Emma was being discharged and that Anne could take her home now. Anne remembers standing there feeling stunned, and the nurse saying ‘well, don’t you want to take her home’ – with no thought about Anne’s situation. She hadn’t anticipated Emma coming home until the weekend, and had to go to work the next day. She says that it was little, simple things like that that influenced her to become an advocate – to work in in a role where she could make a difference, ‘even if it is a tiny thing like “consider the working mother when you discharge”.’
Anne’s experiences with the health care system underpinned her decision, in 1994, to take up a position as the Parent Advocate at the Princess Margaret Hospital in Perth – the only tertiary children’s hospital in Western Australia. It was an interesting role because the Chief Executive wanted a parent or someone who had experience with the issues that faced parents. In that position Anne met many women who were ‘doing it a lot tougher’ with children who were severely disabled. It was, she says, a ‘humbling experience’.
Anne worked in that role for over 5 years, and was then promoted to the position of Quality Manager for the hospital. She then started to think about getting a university education. Three of her children were at university at the time, and they persuaded her that she would be accepted into university as ‘they accepted any old ladies with cheque books!’ Anne started a postgraduate business degree, but found that she knew more than the lecturer. As well as studying, she was already working a 10 hour day, had four children at home (one of whom had a partner, a dog and a goldfish) and had to pay university fees. She decided it wasn’t for her, and gave up her studies.
However, for the past 8 years Anne has been working in a university – as the Consumer Research Advocate at the University of Western Australia and Telethon Institute of Child Health Research where her job is to increase consumer and community participation in health and medical research within those organisations. She is playing a leadership role within the university and the broader academic community – demonstrating to the academics and governments the value of involving consumer and community members in research and setting up systems and processes to enable that to happen. It is, she says, ‘a fabulous job’, and has a great sense of achievement from what she has been able to accomplish.
Anne is also in a leading role within the health consumer movement. She is the Chair of the Health Consumers Council of Western Australia, the peak consumer health organisation in WA. She is also one of the Senior Consumer Representatives for the Consumers’ Health Forum of Australia.
However, she does not think about herself as being a leader. She says that she ‘could no more describe herself as a consumer leader than fly to the moon. It would be a bit arrogant to put a label like that on yourself’. However, the invitation to be interviewed as a consumer leader led her to reflect on this. She had had role models who were older than herself, and believes that it is important to pass knowledge and experience on to the next generation – so she describes her role ‘more as a mentoring rather than leadership role’.
She says that one of the biggest difficulties in being in a leadership role is herself. She realises that she limits herself, and does not recognise her own leadership qualities. ‘Sometimes’, she says, ‘I have to have a really serious talk with myself – to say come on now, a show a bit of leadership here.’ It took her a while to come to the point where she values her own skills. Her two bosses, both high profile academics, have been important in Anne’s development. They have given her the freedom to try new things, and have had trust and confidence in her judgement, which in turn has given Anne the confidence to speak up.
Anne describes herself as being a ‘passionate person’, although she ‘doesn’t slam doors any more’! She has developed more into someone who is tenacious, and ‘doesn’t let it go’. If she feels passionate about anything she works hard to make sure she has all the information or evidence – and then ‘I really don’t leave it alone. It’s hanging in there year after year, saying the same thing and not letting it go. And being known as someone who will have their say and not let an issue go.’
Anne also stresses the importance of sitting and talking through the issues with others and having the flexibility to be able to say ‘I don’t know everything. I think that’s a difficulty of leadership but when you let go of that – that you have to know everything, and then perhaps you can be even more of a leader and more of a role model to people.
Anne also stresses the value of learning from your mistakes. Looking back on her career, she sees says that as a Parent Advocate she made mistakes inasmuch as the job was built around her and that when she left after 5 years, the position ‘took a bit of a nosedive’. She learned that she hadn’t put good systems in place, and in her present job she is building in a way that when she leaves, the work can continue. ‘It’s not about me – it’s about making sure that people can have a voice a lot further down the track.’
Anne is happy to mentor other women, either through the consumer representatives program run by the Health Consumers Council of WA, or through less formal means. She admires younger women, and is keen to see them take advantage of the opportunities that weren’t available to women of her own generation. Her advice to younger women is not to be too impatient, and that experience is important. ‘You have to go through the journey to get to the end – to a point where you do have something to offer, and you can’t really get to that position until you’ve experienced the journey. It’s the experience that gets you to that point. So soak up the experience, and let it happen. But you have to let your passion drive you – so find something you are passionate about and really get yourself into that’.
Interview by Kate Moore
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