Louise (Lou) Bannister

Community Leader and passionate advocate for inclusion

Louise Bannister has been a trail blazer since birth. Born at 26 weeks in Armidale in NSW, she was described as a ‘Miracle Midget’ by the media when she eventually left hospital. Her first years of life were marked by bouts of rigorous physiotherapy which seemed like torture to a toddler. Thanks to the determination of her parents, all Lou’s education was in mainstream public schools.

Lou’s realisation of the power of advocacy was awakened during a year at high school in Seattle where she met a fellow student with complex disabilities whose spirited approach to changing the world served as a role model, and imbued Lou with a sense of disability pride.

Several years after transferring to Canberra in 1991, WWDACT recruited Lou as a research officer to undertake the first-ever survey of women with disabilities in the ACT. A myriad of roles and project work followed, building her prominence in the community. She is now a much awarded leader in the ACT.

An effervescent personality is a key factor in how Lou interacts with everyone. She believes that a supportive style of leadership is more effective than anything hierarchical. Her feminist ideals are founded in a commitment to equity, and a belief that a diverse group of women can work together, to achieve a common goal.

Louise Bannister

I grew up as Louise but I have been Lou since coming to Canberra. Canberra seems to be full of Louises, so I became Lou as a way of distinguishing myself from all the other Louises on committees. I met the lovely Sue Salthouse, and we got to be known as Sue and Lou!

Early years and family

I’ve always been a bit cheeky and very lucky in the family I picked! I was born in Armidale, NSW on August 7 1963, after a big snowfall. I was born 3 and a half months premature. I was born at 26 weeks, but they had to alter my paperwork to say I was born at 28 weeks because anything younger than 28 weeks was regarded as unviable in those days. So if I’d died I would have been regarded and discarded as a miscarriage

It was touch and go for a very long time. I remained in hospital for three and a half months until I reached my proper birth weight. “Miracle midget survives’ was the local paper headline.

There were two great nursing sisters from that time attending, who came to visit me when I had my daughter. They were tickled pink that I’d had a baby of my own. They were both in their late 80s by then.

I have three siblings but I am the middle child in years. As there are 9 years between me and my older half-sister (Dad’s daughter), 8 years between me and my younger sister and ten years between me and my younger brother. Mum lost five babies after me, they were all extremely premmie too.

It was probably just as well there was such an age gap because I took up a bit of time being cared for. I had a lot of interventions and things, like travelling down to the Mosman Spastic Centre every two weeks on the train with Mum to get treatment.

When I was five I became an outpatient. I had tendon surgery when I was 5, and then more surgery when I was 7. I have quite distinct memories. I hated going to the Spastic Centre. I was very ‘fortunate’ to have been treated by Mrs Bobath who developed the Bobath physio technique, when I was 2 - but it traumatised me. It was like a conveyor belt of treatment. There was no getting to know the child, or speaking to them - you were taken to a room, what I thought was a torture chamber, and then taken out again. I was only little. For years afterwards, I had anxiety attacks whenever we travelled near Mosman.

I have little snippets of memory. They would transport me on the bus to hydrotherapy and there were many children with severe CP, and I would imitate them. I did it so well that poor Mum had to ask them to stop transporting me on the bus.

Early education

Dad was a school counsellor. When I was born, he went into special education. He became quite a renowned educator in Australia. He was one of the founding members of the New England Educational Diagnostic Centre (NEED). The NEED centre, which was one of the first centres of its type in Australia that actually worked with school aged children to diagnose learning difficulties. Educators and therapists worked together to develop diagnostic tools and provide strategies for better learning outcomes. A lot of things they developed back then, in the early 1970s, have since been adopted by the Education Department.

My parents didn’t want me to become a live in resident at the Mosman Spastic Centre. As Armidale had a Demonstration School they were able to enrol me there which meant I was one of the first children with a disability to attend a mainstream public school in Armidale. I grew up thinking that every person went to school in a taxi! It was years later that I discovered the reason I went to school in a taxi was because the local bus company wouldn’t take me. It took Mum and Dad years of behind the scenes negotiations to get me on the bus. I started using the bus when I was in third grade. I was fully mobile back then. However I would fall over several time a day, but I didn’t use any walking aids.

When I was at school, I was treated differently; I was always a bit of a teacher’s pet. I was allowed to do some things that other children weren’t. I couldn’t sit crossed legged, so I was allowed to sit sideways. I didn’t have to do sport; I did other ‘exciting’ things, like work in the school Library.

I had to change primary school at the end of second grade because the upper primary school buildings were multistorey with many stairs. So I moved to another little school that was then on the outskirts of town, a lot of farming community kids came in. I was the 83rd kid at the school - Martin's Gully. It was a lovely school community.

I got bullied by two girls a year ahead of me. We had combined classes and those two made my life pretty miserable. But I worked out pretty early that they were jealous of me. They had pretty sad lives.

I did love that school. At times things got annoying. My physio had told me I had to practice walking heel to toe and not drag my foot. And the well-meaning principal announced it at the school assembly one day, so I ended up with 82 students walking behind me saying ‘heel-toe, heel toe, heel toe, Lou.’

I would spend hours with very patient friends teaching me how to skip using the long rope, teaching me how to jump and run in and spending ages doing it.

Teenage years

I didn’t think I was very different. Little things that stick out in my head shock me. My Mum didn’t like me having long hair and I could never understand why. The school got a movie camera and when I watched vision from that, it was the first time I had actually seen how I moved. I just thought I looked like all the other kids - and of course, when I walk my hair would sway, and it would accentuate how unusual my gait was. And I think that is why my mum hated it. So I always had my hair tightly braided when I was young.

I always wanted to be a hippy. I was very sad I was a little bit too young to be a hippy. I loved the hippy fashions and I loved the whole Woodstock music era. I loved the freedom of it. I think my idea of feminism was developed from that era. Girls were allowed to have this freedom. And Mum and Dad's attitude was always, whatever you want to be you can be. Even though they knew I would probably fail a lot of the time, they were very supportive of letting me try things.

I was very lucky to have an older sister. She went out and did all the naughty things, and got in trouble and got curfewed and punished. So by the time they got to me they were really chilled. You wouldn’t believe the stuff I got away with!

I was allowed to go to all night, mixed parties (because our host lived in a neighbouring hamlet). My best friend through primary school was twelve months older than me. So when I started high school, I automatically went to her and I met all her friends.

One of the things I discovered was that my immediate peers found me difficult to deal with. They were the bullies. Little kids loved me. They just accepted me for who I was. Older kids accepted me for who I was. I never felt very comfortable with my immediate peers. So in high school I just hung around with my friend Robbie's friends, and they became my dear friends. And many of us are still very good friends to this day (Bob - my partner) was one of those. I’ve known Bob since I was 13. We started going out when I was 16 and a half. We had a year and a half a part when he headed off to Uni and I still had to complete my HSC. But have been together ever since.

We were the nerdy group at Armidale High School. There were the sporty guys and popular girls, and then there was us, and we were a mixed group, we weren’t gender segregated. We just grew up as a really good group of friends. I don’t think we even noticed we were mixed gender until I was about 17, and then a bit of dating started to happen. We stayed at each other's places and it was all pretty innocent.

But I did cause my parents a bit of grief. I became quite angry with the world when I was about 7 or 8 and started having quite violent temper tantrums. We think it was basically frustration because I realised a lot of the things I wanted to do, I physically couldn’t do. I wasn’t going to be a great athlete for instance. I used to get frustrated, I was a little angel at school, never putting a foot wrong, getting bullied and not letting it faze me…and then I’d walk in the front door and it would all come out.

When I was fourteen Mum became unwell overnight. She woke up with no feeling from the waist down. It was a terrible thing at the time, but it brought us both together. We had a new understanding of each other. A new respect. We didn’t learn until we were in America that she actually had Multiple Sclerosis.

Living in America

My father won a scholarship to study his Masters at the University of Washington in Seattle. He wanted to take me and my two younger siblings over. So we went to Seattle for a year. I became a new form of nasty teenager then - because for the first six months I didn’t want to be there, and the second six months I didn’t want to leave. I was 15 years old.

I went to Ingram High School and I met a young woman there who changed my life. Her name was Lisa Diane Krepps and she had CP. She was in a wheelchair and was partially blind and deaf. She had had meningitis which caused the blindness and had spent 12 months paralysed in bed as a result of it.

Lisa had the most incredible outlook on life. She was changing the world bit by bit. She was just incredible. It was like we were meant to know each other. She opened up so much for me. She was at the stage where she automatically assumed that bathrooms should be available and accessible, and in Australia we still didn’t even have cutaways at curbs! Our school bus was an accessible bus - it did the disability run and would come right to my front door. But the main bus in our street was accessible as well. This was in 1978. So I came back to Armidale in 1979 and thought things needed to change.

Anyway - I met Lisa, and Lisa changed my life. We became very dear friends. I suppose before Lisa I wanted to be ‘normal’, I didn’t want to be seen as having a disability because you get bullied if you have a disability. Lisa taught me to be proud of who I was and that my disability was an integral part of my identity. This was a huge shift in my sense of self.

I was very lucky to be in Seattle doing my year 10. The opportunities I had there were awesome. The things I did were amazing. The types of studies we did were interesting. Anthropology, ancient history, and ceramics - I would make monstrous ceramic objects that I couldn’t bring home. German, Classical Guitar.

One of the things we found quite confronting when we were there was the desegregation program. Children were being bussed very long distances in order to improve the diversity of the schools. Although we only lived one block from a school, my little brother and sister were bussed a whole hour and a half away on the expressway to an all-black primary school at the other end of town. My brother was the only red haired freckled skin kid in his class. He was only five but he picked up a really cool accent and a really hip walk. We couldn’t understand a word he said!

Back in Australia

I came back to Australia in 1979 and thought - ugh! And then 1981 was my last year of high school and it was also IYPD (International Year of the Disabled Person). We thought the world was going to change overnight. But it didn’t. I was really excited about this year. I got involved, we did all kinds of stuff to bring awareness to the issues. I didn’t consciously think I needed to become a leader. I just knew we weren’t doing it right in Australia and we needed to change things.

I had wanted to do a lot of things when I grew up! First of all I wanted to be an archaeologist. My mum explained that there might be spiders to deal with so that one got ticked off the list. And then one of the first books I read was a Time-Life book about astronomy, so I really wanted to be an astronomer. Then someone explained to me that I will need to be good at maths to do Astronomy. So I ticked that off the list. And then someone at the hospital said I would be a good pathologist. They used to take me up to the pathology area and let me look through the microscope but it was a bit boring.

So when I finally finished school I decided I would go to teacher’s college. Getting into studying teaching was interesting because I couldn’t just apply as you normally would. I was told ‘Yes, you can study to be a teacher but you may not be eligible for employment when you finish' Pardon? So I had to get a Commonwealth medical officer examination to state that I was a fit person to be a teacher. I had a lovely gentleman who interviewed me quite thoroughly. He would ask things like ‘do you get tired”. And I said ‘yes’ and he said ‘so do I!” Anyway, he said, he couldn't see any reason why I couldn't be a teacher.

I was in the top 10% of my year in my first year but unfortunately in my second year I became ill with glandular fever and had to withdraw from my teaching studies. During my six months off recovering, I complained incessantly about being bored to who a friend who worked at DSS and who also had a disability. She told me about a secretarial training course that didn’t normally qualify for Commonwealth rehab funding but because I had CP she thought she might be able to swing it for me. So DSS paid me what I thought was a huge amount of money - much more than the dole - to do a yearlong secretarial course at the TAFE in Armidale.

Starting work

At the end of my TAFE course we had to do three weeks work experience. I went to the University and they loved me, so I actually had a job when I graduated. I was with them for five years. When the funding for my position was over, I returned to the teachers' college in an admin role. Then Bob (my husband by this time) did his degree and he only had two days a week teaching. Armidale was not an easy place to get teaching work. So he started applying around for work and that’s how we got to Canberra. We moved here in 1991.

My first job in Canberra was at the Health Insurance Commission on a short contract. Then I got a job at the ANU at the Humanities Research Centre. From ANU I went to the University of Canberra and ended up working with a whole lot of fabulous people who had worked and studied with my Dad.

When I had gone to Teachers College one of my dreams had been to be a Special Education teacher but as I mentioned before that wasn’t to be. In Canberra I ended up at the University, in the department of education, in primary education as an Admin Officer. But I was so far from where I wanted to be. We had one student who identified as a person with a disability, and they ended up convincing them not to teach, because they thought they couldn’t satisfy concerns about duty of care. It was very deflating. I realised we were ten years after IYDP and we were going backwards.

And then, in 1993, I got pregnant with my beautiful girl. It was out of the blue - we have only the one child. And we have now also inherited her fiancé! They have been together since High School too, and have just bought their first home together.

After my daughter was born in 1994 I discovered I wasn’t a super mum. I couldn’t work full-time, have a family and cope with the fact that pregnancy had taken its toll on me. On top of that the University was going through a restructure, there were budgetary constraints and I wasn’t getting the support I needed. So I took some long service leave to consider my options.

Connecting with WWDACT

An opportunity came up for a six month, part time project to do a survey for a small not-for-profit organisation. My then boss at University looked at me and said ‘you’ve never done any survey work and it is only a part time contract for six months’! You have a full time permanent position here, you would be crazy to give that up!’ To which I replied, 'It’s in the lap of the gods. Let see if I get an interview and then if I get the job we’ll see what happens.' So I got an interview, met this lovely group of people, they offered me the Survey contract and I haven’t looked back since. It was with Women With Disabilities ACT (WWDACT).

The WWDACT Chair, Sue Salthouse, took me under her wing as a project officer. She has constantly encouraged me as a dear friend and mentor. A lot of things on my resume are there because WWDACT gave me the opportunities to do them!

It’s having someone who you can talk to and check in with that makes it possible. Getting that little bit of encouragement to move forward. It came at a very good time.

One of the reasons I left work at the beginning of 1998 - I had terrible news in 1997 that my American friend and mentor Lisa had died. She was a shining leading light in my life. Then I met Sue, and Sue helped me with working through all this.

They are two people who have shown me capacity in different ways. Lisa showed me it was OK to recognise and cherish the fact that I wouldn’t be who I was if I didn’t have CP. My CP is not me but it has shaped me as a person. I am a lot more compassionate, tolerant, understanding and empathetic as a result. I’d probably be a really boring person if I didn’t have CP. I certainly wouldn’t have my sense of humour. Sue has taught me the importance of support and friendship and how believing in someone can enable them to grow.

Feminism, leadership and disability

I've received awards for my leadership at various times. It is nice to get the recognition for roles and responsibilities I've taken on. I can only do this with the support and encouragement of my family and friends. I have a long suffering, patient husband and a beautiful daughter, who has grown up with a very special view of the world. She’s grown up with all my friends with disabilities - so it’s all just normal for her. She has an affinity for people who are different and understands diversity. She’s very compassionate, she has a lovely manner. She accepts anyone for who they are, which is what we should all be doing

Styles of leadership that are supportive rather than hierarchical are much more powerful ways of leading, in my opinion. I think that’s where the feminist ideals come through because that style is about equality. So we are all women, we all have our own challenges, we all have very different backgrounds but we are united in the fact that our goals are the same, we want equality, inclusivity, and respect.

People with disabilities are often good leaders because they are very good problem solvers. We have to come up with solutions. We often think outside the square. This is an issue, how do I get around it? How can I do this thing?

Our physical presence in places is a very important form of leadership. Just being there. Little things - like I will just plough my way through shops with their fixtures too close together - I will point out to them when they are creating difficulties for people with disabilities. And some things, like motels with ‘accessible’ bathrooms that still have a lip on the door, so it’s hard to get in! So you just have to raise people’s awareness of what’s needed.

I’m a big fan of Stella Young, who we will always miss. Her big thing was about accessible toilets and how many businesses and restaurants use them as storage areas. So if we come across one who does, we make a big song and dance about it. You make them clear it out and show them how it has to be this way of you are going to get your chair in. That's important! Lead by example!

Am I a feminist? It was probably never a word I used to describe myself. But my Mum would joke about it - because I refused to wear a bra since I was about 14! For me, feminism is about equality, about being equal at the table. I’m aware that we still have a long way to go. Throw in a disability on top of that and you are even back further. I am absolutely horrified at the numbers of women with disabilities (WWD) who have experienced physical, emotional and sexual assault.

I am a member of a CP Facebook group. I grew up knowing only a handful of people with CP and I’m now on a page with 4,000 people. There are a lot of women of my age and it has been eye opening. The majority of those women have experienced sexual or emotional abuse, or they have been preyed upon because they are seen as being weak and vulnerable. We need to change that - somehow - I think we are still failing at that.

Right now, with you, I’m sitting in my meeting chair. My normal chair is a lot shorter than this. This chair has been specially made for me - it is extra high, which makes it more unstable. But the reason I did this is, I discovered that sitting in my smaller chair, low at the table, people would talk down at me. But since I got the bigger chair, the difference has been dramatic. I sit at eye level at the table now. It changes the way people engage with me which is an unfortunate reality.

Work as advocacy, advocacy as work

In any work I do, I still see myself as a disability advocate; just by being who I am and modelling what I like to think of as inclusive, being out there behaviour. I am currently working for a project with the National Disability Services called the Workforce Impact Collective. And we are looking at using impact collective process and coming to solutions to finding a more sustainable workforce for the NDIS.

People with disabilities want the choice and control to pick the support workers we want to have. The biggest problem many people have is that they can’t get consistency. I have experienced that myself. I had for years a relatively set system, but when the NDIS came in there was a whole new influx of demand and I would get a different person each week. There were problems with outsourcing to different organisations. And then the time would change, and the workers would not be punctual. I complained and said ‘I don’t know what you think my life is, but I can’t sit at home waiting on the off chance that someone might turn up’.

Consistency is so important. Imagine if you need personal care but you have a different person coming every time. It is very confronting and it is exhausting having to explain things all the time. I understand you can’t have the same person lifelong, but you would like to have some consistency and some choice. You would like to be able to say, 'I don’t like this person and don’t want them to work with me. This person is not the right person for me.' You need to be involved in the process. A lot of organisations talk about doing that at the moment, but they really don’t have the capacity.

I’m in a pretty privileged position at the moment because I have a good family and financial support from my partner. I know that there are a lot of people who are doing it tough. I’m an articulate person, I can advocate for myself. But what does this mean for someone who isn’t as articulate as me and doesn’t have my connections? The system has to work for everyone, not just the squeaky wheels. There are people falling through the gaps and we have to do something to help these people.

If people need something to enable them to fully participate in their community, or maintain their wellness, whether it be physical or psychological, it should be a much easier process. The NDIS needs to be structured in such a way to enable this to happen. People's individuality must be respected.

I was involved in a program in 2016 called ProjectAble, which is a school workshop program where we work with year 9-12 students to encourage them to take on disability support work, or careers with a disability focus - a careers' advisory program to try to help young adults see what it would be like to work in the disability sector. And I would say - people keep trying to put me into little boxes, do I look box shaped? I don’t fit into a little square box. I have different parts of my personality - different loves and dreams and hates. You can’t fit me into a little box. You won’t fit into a little box!

But government keeps trying to pack us into little boxes and it just doesn’t work. You can’t just say, you’ve got CP, you’ve got a mental health issue…we’ve all got different complex health needs.

I was so excited when they started talking about the NDIS because growing up I used to be quite jealous of people with acquired injuries because they were often insurance recipients and would get all sorts of financial assistance. But my parents struggled through because I was born with a disability. They had to make so many sacrifices as a result. My surgery would have cost many thousands of dollars in today's terms. So this new system will change lives if we get it right, but we have to get it right.

Challenging assumptions and that word – 'inspirational'

(What is and isn’t inspirational)

I’ve grown up wanting to challenge people’s assumptions. So often in our workshops, I don’t see myself as having a disability as such. The community we are in has barriers in the way that make me disabled. If there were no steps, and if there were wide access ways and well-designed cities, I wouldn’t have a disability. It’s only me getting around that is the issue. So you have to think outside the square about what is it holding people back. And most of the time it is attitudes that are holding people back. Assumptions about what we can and can’t do. You don’t have to succeed all the time, you often learn more when you don’t and that’s OK. We need to stop preventing children from experiencing failure. It’s OK to fail. Failure shouldn’t be seen as a bad thing, but a learning opportunity.

Stella Young coined the phrase ‘Inspiration porn’. I hate the word ‘inspirational’! I did a personal training course back in 2005 at the Australian institute of Fitness. I was the first person in Canberra in a wheelchair to do the course. I was in a group of mainly 17/18-year-old men and women. I wasn’t the oldest - and I told them very early on how much I hated the word inspirational and how you need to use it sparingly, and for things that are truly special. Getting up in the morning, brushing my teeth and making a cup of tea and going to work is not inspirational. But I have done some things in my life that I consider are inspired.

So we were doing these activities together, team building, and they would ask the question, ‘use one word to describe your partner’, and it didn’t matter who was sitting next to me, they would say, I really respect Lou because she is so inspirational! Then at graduation we were given a big A3 sheet of paper on which we had to write a word about a person. I got 22 inspirational. They were winding me up!

What are the things I have done that have been most important or inspirational? I cheated and got to the top of Mt Kosciusko and I thought that was amazing! I got a ute from Charlotte’s Pass to Rawson pass and then a parks' person put me on a six-wheeled motorbike and rode me to the top, while my family walked beside me. I was on crutches at the time!

My beautiful daughter - my baby - I'm so very proud of her!

My husband says my capacity to talk to people, for him, is inspirational. He isn’t comfortable doing it. He is amazed that I can move into a room and engage with it doesn’t matter who - a homeless person, or a minister, someone I’ve never met before - I can just engage. I don’t find it easy, but I do enjoy talking to people. I like to find out about people.

When I’ve done something and done it well, I do feel that is inspirational. Just little things that others might not recognise but I am proud of. I’m always a bit overwhelmed when my colleagues and others recognise me, and nominate me for awards, but I appreciate it.

The importance of WWDACT to helping women find their voice

In being part of WWDACT - you get the sense that there is a shared achievement. I see what we do as a team effort. Many of the things we've done, the awards we have won, we have won together. The programs we have developed we have done together. I’m very proud to be associated with such an amazing group of women.

Some of the things they have done, I find truly inspirational - but don’t tell them I said that! We have some incredible new, young women who are coming on board, and they are even more phenomenal - coming into work under the NDIS.

I have a young colleague who is in their early 20s - they wanted to thank me and others of our generation who have forged the way in the past, to make their world so much better. I suppose we have, by being out there, by being seen and ensuring that we are doing the things that we want to do, and that need to be done. We are changing the direction for other people.

As I was growing up, one of our neighbours was a woman in her 70s and she had grown up with a clubfoot, and had basically been hidden away for most of her life. She never debuted, she never married, and all it was, was a clubfoot and she had to wear a built-up shoe. She had a sad and lonely life because of her disability. And I always thought, that’s not what life is meant to be. You’ve got to be out and be seen.

So, I’ve started wearing very bright clothes as an adult, because I figure if people are going to stare at you, given them something nice to stare at. And I always have eye contact and smile at people. So when people don’t know how to take me, I disarm them with my smile and then they just see me as a woman, not as a disability or a set of medical diagnosis.

Lou Bannister was interviewed by Dr Nikki Henningham on 15 February 2018 for the Redefining Leadership project.