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Sharon’s story – The Beginning

Sharon’s story – the Beginning

I was born in Toowoomba and for 11 years was a fit, healthy, sporty child. I was never still for a minute and as all my teachers would attest, I was never quiet for a minute either. Some things never change!!!! I was diagnosed with Juvenile Chronic Arthritis when I was almost twelve. I was relieved to know what was wrong with me as I was tired of the endless rounds of doctors and tests. I never realised the consequences of that diagnosis or the changes it would bring to my life. I had no energy and was having trouble walking, but I was still glad to be able to name why I was feeling so different.

The changes in my life have been gradual and acceptance has been learnt. I had no idea what it was like to even be sick. After completing my schooling at Rangeville State School and Centenary Heights State High School, I began studying at U.S.Q. By this time my joints were becoming progressively worse and I was having trouble walking more than a few meters. I was lucky my Mum and Dad were willing to run me back and forth to my classes. They dropped me as close to the door as they could and picked me up so I could go home and have a rest in the breaks. I should mention here how lucky I am to have a family as supportive and caring as mine. My parents and sisters have sacrificed a lot to support me and help me with my goals. I would never have achieved half the things I have in my life without this support. They encouraged me when I felt bad and didn’t want to get out of bed. They put up with my complaints but most of all they taught me not to give up.

I have a lot of friends who were and still are really supportive. I also made lots of new friends at USQ who didn’t mind walking slowly or carrying my books for me. The lecturers at USQ, as well as the support services, were, on the whole, incredibly supportive and it was with this cooperation I finished my first two degrees at U.S.Q. I loved studying History, English Literature and Communication and some Journalism subjects.

After completing my Graduate Diploma I was very lucky to be offered some joint tutoring with the then Dean of Arts. After a nervous start, I realised this was what I really enjoyed and decided I would try and continue this work and complete further study. It was around this time that I was having real trouble trying to walk and was gradually realising I would have to start using a wheelchair. I got my wheelchair and my life became much busier. I could still walk a little but I used the chair most of the time. I didn’t realise how much energy I had used just trying to walk. Now I had the chair to use I could do twice as much without feeling tired. It was only now I was using a wheelchair I began to acknowledge I had a disability.

Ever since I can remember I had wanted to be an early childhood teacher but as my Arthritis became progressively worse I realised that dream would have to be modified. I decided I would still become a SOSE teacher and chose English Language and Literacy and History as these subjects fascinated me. After completing my first degree I decided to complete a teaching degree and I also began teaching in the Faculty of Arts. I loved this but my real passion was still education and when I was offered work in the Faculty of Education I jumped at it, especially as one of the subjects I was working in was actually teaching students in the area of early childhood. After completing my first degree I decided to complete a teaching degree and I also began teaching in the Faculty of Arts. I loved this but my real passion was still education and when I was offered work in the Faculty of Education I jumped at it, especially as one of the subjects I was working in was actually teaching students in the area of early childhood.

This grew to teaching across many of the early childhood and primary courses at USQ. I taught early childhood language development and lifespan development along with art and music. I also taught in heath, curriculum and pedagogy. I have had to be adaptable and flexible in my teaching and in my life. As my body has changed, so I had to change. As my fingers and joints broke down my ability to play the piano I had played since I was four years old had gone. I am a qualified music teacher who has studied AMEB Level 8 and I used to teach piano and clarinet, so the importance of using music within early childhood is another one of my areas of expertise. Because of the duty of care issues within teaching I had to chose a different pathway but I believe it is sometimes amazing how ones life journey sometimes takes them where they least expect it and the work I do every week with early childhood students and teachers is both rewarding and exciting.

Understanding children and how they learn is firmly linked into the ideal of building strong partnerships, establishing flexible learning environments, creating contexts for learning and development and exploring what and how childen learn. One of the key contexts for learning is play and the play based curriculum is essential to all early years learning and I personally believe it is essential for all learning. Within all our consultancy work the importance of play, blended with learning, is a key factor that emerges when good pedagogy is discussed.

I began working in the Faculty of Education, under the guidance of Dr Ron Skilton. He was a friend and mentor and with his help, advice and encouragement I continued my teaching. I also completed my Master of Education Honours degree. I loved and still love working at USQ. The students are great and the staff is very supportive. There is however one thing that still bothers me about having a disability and that is that people underestimate what you are capable of. Even people with the best intentions in the world, sometimes assume you would not be able to cope with certain workloads. They put limits on you. I am a person who needs to be doing new and creative things all the time so I do not let my disability limit me, if at all possible. I want to make a difference to our society and I see I may only have a limited time to do this and this is what drives me. If someone says something cannot be done, I will make sure that it can. This is probably why I take on so many projects just to prove I can!!!!!!!

My interest in disability awareness was gradual, as was my consciousness that I was disabled. It is very different when you have spent your life with no limits on you to begin to realise your own body is placing the limits on you. I started to see the importance of creating real inclusive communities and I wanted to create an understanding about disability. My love of education and how it can make a real difference also began to evolve.

I started to write a children’s storybook about disability ‘Discovery at Paradise Island’. I wanted it to fun and exciting, but above all I wanted it to carry a message, that someone with a disability can do anything, even if they may have to do it differently. We should not place limits on someone just because they are disabled. I wrote most of the book and then became so busy I left it on the computer and thought I would do something about publishing it one day.

I began to feel really bad in December 2001 I knew something was really wrong with me. My hands and legs were numb and I was having trouble breathing. I was not able to lie in bed or get into a car. I couldn’t bend any of my joints. I was helping Michael to finalise and edit and organise his final thesis printing and publication and while I enjoyed this process I began to realise something was terribly wrong with me when after sitting at the computer for a couple of hours I was unable to breath properly or feel my legs. Michael was massaging me after I did his IT work and editing for him, and taking me swimming and I still was getting worse. I knew in myself I was dying and after going to a number of doctors I still continued to decline. After a short holiday where I spent every waking moment in a pool and doing everything i had never tried before, I went and saw my rheumatologist in Toowoomba. After looking at me and telling me how fit and healthy I looked, her expression soon changed when I explained how I was actually feeling. My feeling of numbness and problems with breathing were diagnosed as quadratic symptoms, in simple terms my spinal cord was being cut by the joints in my neck. My Arthritis had eaten away the joints in my neck and they had broken.

I was told I must have emergency surgery, which was highly risky, very tricky but essentially would be life saving. I didn’t realise how close to death I was. I hopefully asked my doctor whether the surgery really had to be done. His reply made me realise just how close I was to not being here. He simply said “Put it this way, you would not have woken up on Friday morning”. This was Wednesday lunch time!!! It is amazing how the human body works. It sends us messages and we need to hear these things. My surgery was performed by Dr Frank Tomlinson and Dr Richard Kahler and an amazing support team who managed to preserve my spinal cord and secure my neck, despite the fact all the bones were crumbling. I owe my life to these doctors, my Rheumatologist and God. I believe it must not have been my time to die and that God had a bigger purpose in me being here still.

The timing and how everything happened supports this. I was within about three days of dying, according to my doctors. When I went to see Sonya Nagel (my Rheumatologist) I had exhausted every other solution. I had increased my medication, my exercise and been to other doctors. She not only diagnosed my problem straight away but managed to get me booked in with the top Neurosurgeon the next day.

My visits to the other doctors were not in vain either. I was later told if I had not started the stronger medication when I did my joints were so inflamed that my spinal cord would have been cut before I even knew what was wrong. Timing is everything when you are dealing with something as sensitive as your spinal cord. I believe everything in life happens for a reason and this is one of the driving reasons behind developing Discovering DisAbility & Diversity. I knew I survived for a reason. I had to use this time to make a real difference.

Don’t get me wrong, everything in my life isn’t always positive. There are many frustrations and disappointments. It is very difficult to deal with the fact my body can’t keep the appointments my mind makes for it. Sometimes I still see myself without a disability but no one around me does. I hate the fact I have no control over what is happening with my body. In my mind I can do anything but in reality it is quite different. I get sad, angry and depressed at times. I wouldn’t be human if I didn’t. This usually doesn’t last for long as then I think about all the reasons I have to feel great about being alive and I feel better. I don’t want to waste a moment being negative. We all should focus on the positives so we can achieve more.

When I was told I would have to have a second operation on my neck before it would be secure I was very upset. I don’t want to face the whole process again. I wanted to give up, but only for a moment. Then I thought about everything I had survived and how far I had come and I decided I couldn’t give up, there is to much to do. My parents always taught me to never give up, so I guess this was also some of their influence rubbing off on me. I have already put the operation off for two years and I know I am living my life on a knife-edge. I am trying to look at the real advantages for getting it done, but the real truth is if I don’t I won’t be around. I have a lot more I want to achieve so I have to face the operation sooner rather than later. If it is as successful as the first one I will be very happy.

When I had recovered from the surgery I decided I didn’t want to waste a moment of my life. I decided to finish my book and self publish. I didn’t want to wait. I felt life was too short not to do what you want and I felt I had been given a second chance so I had to make the most of it.

I published the book with the help of a lot of people and then decided to develop a disability awareness program to let children and adults experience and explore what it is like to have a disability. After much negotiation and with the help of a lot of generous sponsors Discovering DisAbility & Diversity was born. I wrote designed and developed the program and I wanted to work with someone who had similar values to me and someone I knew. As Michael had lost his job at USQ I asked him if he would like to be a part of this process to make a real difference in creating inclusive communities, he accepted. So I wrote, designed and developed the original program and the early childhood program and I got Michael and my sister to work with me. Michael drives the van and also helps with some care as well as helping with the workshops as well. Sometimes it is frustrating having so many ideas in your head and a body that won’t do them for you. But I work with good people and it is exciting to go out every day knowing you are going to make a difference, in a small way, to people’s attitudes and lives in general. If only one person hears the message it will be worthwhile.

In the last nine years we have visited over nine hundred schools and preschools and childcare centres and spoken to thousands of children and adults who have shared their stories, personal struggles and life journeys with me. I worked collaboratively with my sisters Angela and Deborah, who are both early childhood specialists. We adapted the program to take it into preschools and childcare centres and we have had some life changing and amazing results. Children are so open and honest. I have met and worked with some of the best people. The people I work with often get tired or bored. I don’t often feel this. I become energized as I can see the real changes that are happening. It is exciting to be part of the process.

I was actually thinking about my life as I was writing this and thought it is funny how life works out. My childhood dream was to work in a preschool. I not only got to teach early childhood teachers but also now get to work with the children in their centres everyday. As well as that, I get to work across all year levels and speak to a broad cross section of society. My life has been an amazing journey with many great opportunities. We should never underestimate how our life will turn out. There are adventures around every corner! Click here to see some of my recent art works or some pictures of my Disability Action Week Award, my Human Rights Award or information about my recent award from Toowoomba East Rotary Club.

I recently had the opportunity to run, or wheel in my case, with the Commonwealth Games Baton Relay. It was incredibly exciting and I felt priveledged to be chosen to be part of this inclusive event that travelled right across the world. The work I do with the Disability Council and the Regional Disability Council in Queensland has also been keeping me very busy and it is an exciting time to be involved with disability awareness and the process of government support in this area.

This year we plan to do more work with our teacher professional development sessions and workshops across the region and so far this has been progressing really well. We have particularly been asked to focus some of our sessions on early childhood education which we have done and we have had some great sessions with many groups, such as our recent workshop at the University of the Sunshine Coast for the C&K Association. We have also developed a whole variety of workshops that deal specifically with Hidden Disabilities, like Autism, Asperger’s Syndrome, Intellectual Impairments, Speech Language Issues and Perceptual problems. These are often a lot harder to understand than physical disabilities. Our sessions can help in this understanding process. You can find out more detail by clicking on the side bars.

I have also been doing some motivational and after dinner speaking which I really enjoy. I like to share my life experiences and the stories of our work which inspire me every day. I feel I am privileged that I get to listen to other adults and children’s stories that they open up and share with me every day. I guess I never dreamed that all these opportunities would evolve and develop when I first started Discovering DisAbility & Diversity, but again that is the exciting thing about life. We never know where it might lead us. We just have to be prepared to try our best and work towards our goals. I want to continue to achieve as much as I can to break down the barriers about disability and allow all people to achieve their individual dreams. I have been lucky to have the support that allows me to continually do this.

Enjoy Life and Live it to the Full!!!!!