Kerry Snell

Campaigner for equitable access to mainstream services

Kerry is a campaigner for equitable access to mainstream services and ensuring that people with disability are well represented through diverse leadership.

Born in Brisbane, when Kerry was young she experienced frequent extended hospital visits. Through this exposure Kerry became aware of the importance of good governance for institutions to ensure that people accessing them are treated respectfully and with dignity. As her eyesight began to degenerate she devised a myriad of workarounds that disguised her vision loss. This made Kerry adept at problem solving, and finding adaptations and solutions to the challenges vision loss presents.

Kerry trained and worked as a teacher and went on to use these teaching skills as a consumer advocate. Holding governments and institutions to account for their policies and prejudices is an important facet of her community involvement. As an advocate for diversity in government and the community, Kerry is also wary of tokenism.

A clear commitment to equity and social justice naturally made Kerry a feminist too. Women with disability suffer higher rates of disadvantage and stigmatisation.

Family

I was born in the 60’s in Brisbane. My parents were always supportive and provided lots of great experiences and unconditional love. Dad was a fitter and turner by trade and mum a secretary. She had to quit her job when she got married, as they were the rules for women back then. They were married young as was also the way back then and money was very tight. But through hard work they changed that. Mum went back to work when I started high school starting in the shoe department and ending up being the Electronic Data Processing Manager at David Jones. Dad started off working on the wharves and ended up starting a very successful forklift hire and repair business. They both had a great work ethic.

Even though mum didn’t talk about feminism or identify in that way, she was no shrinking violet. I know going back to work was very important to her, to gain financial independence and have her own source of money. It must have been hard starting again having been forced to give up your career - so good on her!

Dad was quite evolved for a man of that generation. Mum told me he changed nappies and was very hands on when we were little which in those days was not necessarily expected of males. He also cooked dinners when they were both working full time. But there was still quite a gendered division in household chores. He did all the outside stuff and she was in charge of the inside. There were a lot of gendered expectations around her. I know that she felt society’s judgement on the appearance of her home and of herself. I think it was a tough time to be a woman - the double shift of work and household chores and all those restrictive expectations around gender roles, not to mention all that ironing!

School days and growing up

I went to school in Brisbane. I had a very shaky start because I was a chronic asthmatic. I was in and out of hospital from about 18 months old and my parents thought I was going to die. When I was 4 years old some wacky doctor came up with the idea that I was being hospitalised so much that they needed a halfway house between home and hospital that had oxygen on hand. So three times between the ages of 4 and 6 I was institutionalised. We weren’t Catholic, but for months at a time, I was put in Xavier Home for Crippled Children in Coorparoo. Nuns ran it and parents were only allowed to visit for 2 hours on a Saturday and Sunday. I’ve done a lot of work on that period of my life to come to terms with it but it did effect my early socialisation and schooling.

I was a pretty shy kid when I came out of that institution and went straight into Year 2 having only attended about 6 weeks the previous year. Mostly, I loved school, but those early years in the institution had an impact. I was very clingy to my Mum for a couple of years. Then I discovered sport and friends and got involved in lots of stuff. I loved swimming; my Dad built above ground pools for me and that really helped my asthma.

What happened next?

When I was about 14 I noticed something happening with my eyesight. My sister had already discovered something wrong with hers but no one could say what it was as it was in the Macula of the eye and not easily diagnosed back then. I didn’t say anything to anybody about what was happening to me. I was in great denial about it but I had to stop lots of the sports I loved like softball and tennis. I became quite rebellious for a few years; I was a naughty girl in the first couple of years of high school.

In the classroom - I couldn’t read the purple print on the handouts they used back then. I actually couldn’t see it at all. I became adept at pretending to see stuff. One I handed in a blank English exam! The teacher didn’t ask any questions about why my exams differed in results from my assignments. But generally, I still had a happy time. I still loved sport and outdoor education - when it became more difficult I just did swimming. But looking back now I can see everything was overshadowed by this denial of what was going on with my eyesight.

What I have is called Stargardt’s Disease. It is a recessively inherited central vision loss. Recognising faces and reading print are affected the most. When people ask me what I can see I often say ‘I can see the tree but not the leaves’. In other words I can see the form of someone but can’t distinguish who it is.

For a very long time I just found ways around things, pretended, or denied what was really happening with my eyesight. I wasn’t interested in finding out about it as no professional could tell me what it really was or how bad things were going to get but just that nothing could be done to make it any better.

Career

I went to uni and I couldn’t read stuff, but I was never going to tell anyone. If I had, I don’t really know what would have happened. Maybe I would have got kicked out. Because much later on when I could no longer be in denial and I was actually working as a teacher there were things that were said to me by people in leadership roles which were outrageously stigmatising and would be seen today as blatant discrimination. That was in the 90’s – over 20 years ago now.

So I looked at it as an opportunity to re-train and make a change to my life. In retrospect, the ignorant and out-dated leadership shown to me at that time led me to have a more interesting and diverse career than I might otherwise have had.

Another chance teaching second chance learners

Next I worked in a TAFE College teaching English as a Second Language, tutoring, and managing the volunteer tutor program. I also taught adults with disabilities - job ready sort of stuff as well as literacy and numeracy. They were fantastic jobs with a great group of people. It was brilliant working with such a diverse group of people, many of whom were refugees.

Was I always an activist?

After we moved to Canberra and had young children at home my activism was limited. I've always had a social justice bent, and I probably wasn’t really out about my disability because it still wasn’t at the level that it is now. My first foray into advocacy was when I as in my 20’s working in an Aboriginal community as a teacher. I found it hard to ignore the appalling educational outcomes for the students. There was a pretence that what was happening was OK – but the reality was there was that the education system was grossly failing these students.

Stupidly, I thought that I could make a change. I wrote lots of letters to multiple ministers, and got the Teachers Union on side, fighting for lower class sizes so you could have better relationships with kids and more adequately meet their needs. Looking back now, it was all pretty naive and embarrassing because it didn’t come form the community - I was a white fella agitating about a white fella system. A good outcome was that it did make the staff at the school cohesive in their fight for the kids at the school.

Was I always a feminist?

I certainly identify with it strongly now. I didn’t do women’s studies; I wasn’t in that sort of political group. I wasn’t exposed to the theory of women’s studies, the academic thinking. My Mum wouldn’t have used that term, or my extended family, even though my Auntie was a wonderful strong and inspiring matriarch of our extended family.

What is feminism? To me, it's just about being fair, just, and equitable. Thee must be equal representation on decision making bodies -whether you are indigenous, a refugee, or immigrant, or a person with a disability. At the moment we don’t even have proportional representation of the 50 % of our population that is female - we have a long way to go!

Disability and feminism intersect hugely. The intersectionality of it just means you have disadvantage and stigmatization piled upon pile. It has a multiplier effect! If you look at the issue of Violence - the sexual and physical abuse rates for women with disabilities are just horrendous. Australia’s record of violence and sexual abuse on any female is bad enough. But then put the disability lens on top of that, and then the indigenous lens, it is almost unbearable to read the research in this area.

I connected with WWDACT when I was working as a health consumer advocate. I was on their board for a while and represented them o n the Ministerial Advisory Council for Women. I ran a campaign around the affects of a decision made by the government to relocate some of the Rehab services out of the Canberra hospital to a centre, which made it inaccessible and unsafe for those who don’t drive. It definitely negatively affected people with disabilities disproportionally and these were the services used by them. For instance this is where the wheelchair repair service had been relocated. The centre itself was great but the decision made about its location was made with out consultation or forethought about those users needs.

Assisted dying, personal grief and disability politics

Unfortunately, both my parents got Parkinson’s disease; it is really incredibly rare for two of them to get it. It is just terrible to see people you love suffering with that horrible disease. They are slowly robbed of every dignity, really, physical and mental, because the drugs cause a sort of dementia in the end and no longer hold their physical symptoms at bay. Watching their sad trajectory with this disease has made me a passionate advocate for voluntary assisted dying.

Experiences of advocacy, activism and leadership

Many leaders now just represent themselves, not the people they are supposed to represent. I don’t feel like a leader in any sense of the word - but I do strongly believe in holding people in government and others who provide services or products to account.

Research clearly shows that diversity is good and that for example there is a positive correlation between the success of a company and the level of female leadership. I believe it's the same for people with disabilities, and other marginalised groups - the benefits seem so obvious.

I was involved in advocating for health consumers for nearly a decade. My passion was for ensuring the best design possible for patients and carers of new health buildings and services. This was a once in a lifetime opportunity to get things right. We’ve been through a rapid period of new hospital and health facility builds in Canberra. Where we have had the most impact is the new University of Canberra hospital, which has just opened up. I think you can see the difference. Its design has been acknowledged as an improvement for patients and carers. This outcome is due to the efforts of a wonderful group of representatives advocating for years for patient and carer centred design. If this voice isn’t represented in decision-making bodies you end up with architect, doctor, and nurse centred design - which hardly makes for a healing environment!

Advocating for accessible formats

During this last decade, I found myself working in a very print-rich environment. I was attending frequent meetings where I had to read enormous volumes of papers. I advocated and worked with the government agency on their requirements around provision of accessible formats for people with vision impairment. I use screen magnification and reading technology on my computer. Everything is magnified four times. So I scroll across, or use a screen reader to access electronic print. In printed material I use large print, which in my case is 20-point font. I had many years of frustration with the ad hoc provision of accessible formats.

Systemic advocacy is hard work especially when you are the one voice around a table of highly paid and powerful decision makers.

I was not backward in voicing an opinion but these meetings tended to be very homogenous; that is not at all representative of the actual make up of our community. Although white middle class males were well represented!

The toll of advocacy

Being a passionate activist can be hard work. I got to the point that I was angry all of the time. When you are in a lone representative role on a Government body it can feel very tokenistic. It can appear to simply tick a box rather than being genuine. What’s needed is to have a diverse group of people with real lived experiences to inform the important decisions being made.

It was wonderful working with great people, but I started to get cynical and burnt out. I’m a practical person; I want to see some action and real change. I am incredibly grateful for the experiences I have had and honoured to represent women with disabilities and heath consumers in general.

Retiring and getting healthy

Being passionate in my advocacy role I found it hard to accept the very slow outcomes and change. I’m afraid I’m not a “drip, drip, drip” person. I “spurt, spurt, spurt”! I believe there is a place for both.

I’m now retired. I do some volunteer work with people with disabilities but mainly I am trying to get healthy.

We all have disabilities

If you look at disability the way the World Health Organisation looks at it, we all have disabilities. We are all somewhere along a continuum for all of our traits. We need to look at it more in that way, rather than people with disabilities being simply seen as different. I'm lucky- I’ve got a great partner, and healthy kids; a wonderful supportive family. I’ve had a great education. I’ve had wonderful opportunities and privileges afforded me. I’ve got great friends and family, and I’ve had wonderfully diverse experiences.

Living with a disability has made my working life much more interesting. My life has been fantastic through the opportunities I’ve had and the people I’ve met as a result of my disability.

Kerry Snell was interviewed by Dr Nikki Henningham on 12 September 2018 for the Redefining Leadership project.