Saturday, March 31, 2007


Be free

She falls into the darkness,

After taking a step,

Away from the light,

A step towards freedom.

From the stares and whispers,

The torment and thoughts,

That no-one cares,

There is no one there.

She is a twisted soul,

Changed in so many ways,

Sometimes she’s not sure,

She cares anymore.

She falls into the darkness

It is a welcome relief cos’

Here she is free

Just free to be.

Away from the stares

Tormenters, questonors and pitiers

I can live, breathe and be me,

Be free.

Friday, March 30, 2007


I had physiotherapy on Tuesday. I went though a period of time when I was a teenager when I refused to do physiotherapy. One of the surgeons who I saw at the Royal Children’s Hospital told me and my parents (when I was 12 and at a rebellious point in my life anyway) that no matter what I tried to do I would only be able to sit in a wheelchair for the rest of my life anyway. So I began to question why I was doing physiotherapy. At the next session I had I asked my physiotherapist what the point of each of the exercises I was supposed to do was. She refused to tell me (I wonder if she even knew? ) and I refused to do them.

I’m a stubborn person so it took me a number of years to realise that the physiotherapy was going to benefit me and despite the opinion of the surgeon I wasn’t totally useless. So last year I began physiotherapy again but then in June I became a medical mystery. I was (and still am) suffering from the following symptoms:

Entire body extremely swollen
• Burning sensation throughout body at times
• Lumps on back of legs & wrist at times
• Cough at times
• Trouble breathing at times
• Fatigue
• Pain throughout entire body
• Muscle weakness
• Blue fingers & lips at times
• Tingling in hands/feet at times
• Numbness in legs and arms at times
• Unexplainable bruising
Lack of appetite

The latest theory behind all of this is it is all related to the CP. I’m not sure about this because I thought that CP was supposed to be non- progressive? Anyway the problem now is what to do about it all. In Victoria there are no doctors who will treat people with CP if that person is over the age of 18. So for now I wait til someone decides if it is CP related or not.

I was told not to do physiotherapy when I got sick in June because it may have been the cause of my problems. It wasn’t because if anything the problems are worse and I’m weaker. I had an interesting conversation with Kate (my therapist) on Tuesday. I asked her if I would be able to get back to where I was before June (walking with a walker and quite strong). She wouldn’t make me any promises but hopes I can.

The point of this very long post: I’ve finally found a physiotherapist who I trust. Now why can’t I find doctors who will treat me? Do other people have this problem?

Monday, March 26, 2007

Secondary school days

Secondary School Years

Although the first day of secondary school is hard for everybody, I had the added difficulty of a school that, while it had ramps and access to buildings, was poorly designed in terms of how to access the access to the buildings. On the first day of every school year there would be a whole school assembly. Each year level had a specific door, through which everyone was supposed to enter the building. But only one door had disabled access. That door was not the door through which year sevens were supposed to enter. Nobody had shown me where I was supposed to enter so I went with my friends to where they had to go and found that I couldn’t enter the building. I stood around looking lost until my integration aide (who thankfully had moved up with me from primary school) came along and rescued me.

This made me more nervous and scared than I already was. It was also embarrassing because the rest of the school had already entered the hall by the time I did, so they all turned around and looked at me when I entered.

The solutions to this problem may seem fairly obvious. I should have been shown how to enter the building on orientation day, or perhaps the school could have simply made that door the access door for year seven.

The access issues didn’t stop with the assembly hall incident. Sometimes a class would be scheduled in a room that did not have disabled access, so the class would have to stand around waiting while another room was found, and then move to that room. This made me feel like I was creating extra work for the teachers, and embarrassed me because everybody had to stand around just because of me. The class probably didn’t mind so much because it meant we didn’t have to do so much work. However, I felt that the teachers were upset with me for disrupting their plans for the lesson.

I really don’t think I need to write the solution to this one in here; common sense should be enough.

During my time as a student, the school was renovated. A new disabled toilet was installed. This toilet was big and pretty good in terms of access, aside from one problem. I needed my integration aide to assist me with getting on and off the toilet but required privacy at other times. The problem was the toilet faced the door and was in the main administration building and thus faced a busy corridor. If my aide was to leave the room and give me privacy, I would have been exposed to the school community when nobody wants to be exposed.

A shower curtain around the toilet solved the problem but it took a long time (or at least what seemed a long time to me) for the school to recognise the need and arrange it.

Another issue arose when it came to my attending classes without my integration aide, whom I didn’t need with me all the time. Often she would set me up with my books and go and work somewhere else, and then return to help me pack up my books at the end of class. Some teachers would not allow me in the class without either her or another aide with me. When my aide went on long service leave I missed a whole term of maths class for this reason. I believe this had a major impact on my future, as while I was never great at maths, and never loved it anyway, maths became torture after this. I didn’t do maths at VCE level, which has placed limitations on my career options.

Each maths class the maths teacher would tell me to go and find the coordinator of the integration aides, and ask him to arrange an aide to work with me for that class. I would do so, to be told there were no aides available and to “go study in the library”. I was left struggling through the appropriate textbook by myself, when I should have been in the classroom where the teacher was explaining things.

The solution to this issue is more complex . Ideally, teachers should be comfortable having students with DisAbilities in their classes, with or without the support of an integration aide. If the teacher is not comfortable with this, an integration aide should be with the student at all times.

I tried to explain to the teacher that I would be fine without an aide and wasn’t about to drop dead or disrupt the class in any way, but he didn’t seem to believe me, or at least didn’t want to take that risk.

I think some people are afraid of things they don’t understand. All of my teachers should have had the opportunity to meet me, along with my aide and parents, to discuss my abilities and needs before the start of each school term. This may have helped the teachers to feel comfortable around me and would have made classes much easier for me.

I also feel that I was let down by the coordinator of the integration aides, because he failed to recognise the fact that missing class was a major problem for me, and never spoke to the teacher or arranged an aide to be with me.

My experiences at school were not all bad and I made some really good life long friends during this time. I remember in year 7, some of the boys used to like tormenting me by asking me if I would go out with their friends and then laughing at whatever my response was.

I grew tired of this (as it would happen at least twice a day) and finally said yes one day. Both the boy who asked and the boy I was supposed to go out with turned bright read and the boy who asked came up to me later and said that he was very sorry but he already had a girlfriend. I told him exactly what I thought of him and suggested that I could go and tell his girlfriend that we would be going on a date that weekend. He didn’t like that idea very much. I don’t know if I would have done it, but watching him squirm was very satisfying.

Another time, a girl who I now understand had a very hard home life and was jealous of me made some cruel remarks about ‘people like me and being allowed out in public’. I fell apart and was ready to leave school and never return but what this incident taught me is that I had some very good friends who comforted me, told the girl where to go and also told the teachers who dealt with her.

I wish I could go back with the confidence and understanding I have now and deal with the situation for myself. I would probably say to the girl that I understand that she has issues but I have as much right to be a part of society as she does.

The other major issue in terms of my schooling came when I was to choose my VCE subjects. I wanted to do law when I left school and to get high enough marks to gain a university place I needed to do the science subjects (and probably maths). However the integration coordinator informed me that it was felt that I would require too much assistance from my aide with the experiments for it to be considered my own work. Therefore I was unable to complete the subjects.

Once again I am not sure exactly what the solution is. I know I could have gone to the anti-discrimination board, but that would have made my life in the small town where I live hell on earth and I may not have got my VCE at all.

One day I will fulfil my dreams, I am just taking the long road to do it.

Sunday, March 25, 2007

Walking With Wheels introduction and early years


At my primary school the grade sixers get to design a T-shirt that has the names of that year’s students on the back. The slogan on the front of my T-shirt is ‘we don’t need no education’. While this may be seen to be true in terms of how much a twelve year old thinks they need to learn, it sure isn’t true when it comes to improving access to the school community for students with DisAbilities. This is essentially what this book is designed for. It is about my experiences as a person with Cerebral Palsy in the mainstream school system. I hope that people will take my experiences on board and listen to my recommendations when it comes to their child’s schooling. If I can improve the school life of just one person, then this book will have been a success.

I have detailed the major experiences of my primary and secondary school years and tried to come up with solutions to the problems. These solutions will not work for everybody but may be worth trying. I have also written about my education at the moment and asked some of my TAFE teachers for their experiences in working with people with varying kinds of abilities.

Thank you for taking the time to read this. I hope it helps you in some way.

The Early Years

There was a lot of laughter, a lot of tears. I wouldn’t say that I would not do anything differently, or wished that certain things never happened, because I would be lying if I did. There are things I would do differently if I could borrow Dr Who’s time machine, and I do wish that some parts of my schooling were handled differently by the education system. But I have come to realize that the system, as it stood when I was a student in the 1990’s, had not had much experience with a student with physical DisAbilities but who could handle the work of a ‘normal’ school. I was one of the first people in a wheelchair to attend both my primary and secondary schools.

I don’t remember a lot about my early primary school days, at least not in terms of being an integrated student. I don’t think I realized that I was any different to my friends. For a child five or six years old, life is about having the right toys. At that stage I had those toys, thus I fitted in fairly well. I used a walking frame, which my Dad had made for me, so I was also able to run and play most of the games the other children played. I was one of them.

By the time I reached Grade 3, I began to have trouble keeping up with my friends and thus received my first set of wheels. They were fluorescent pink. One of my teachers made me a set of L Plates to go on the back because I was not really sure how to control the chair. Looking back, I am sure that most people around me would have had sore feet at one time or another, because I would have accidentally run over them.

My set of wheels became my independence, but they also separated me from everyone else. They created a difference that could be seen by everybody and limited me in ways that my walking frame never did. For example, I could lift the walking frame up steps if I needed to. For the wheelchair I needed ramps. I think the wheelchair was the thing that made me realize I was different to everybody else. The wheelchair limited the places I could access, and therefore the extent to which I could participate in certain activities both inside and outside school.

Despite the limitations it placed on me at various times, I don’t regret the fact that I use a wheelchair. In terms of being able to travel long distances it has provided me with a freedom I would never have had otherwise..

During my primary school years I had a number of therapists come to the school and work with me. These included physiotherapists and occupational therapists, among others.

I was taken out of class to work with these people and this was another way of making me seem different to my friends. Sometimes, a friend would come with me. This made the sessions more fun, and gave my friends more insight to the therapy I needed. I know that having a friend with me made the therapy sessions much more interesting, and this probably made them easier for me. I think my friends being with me at these times also made them more compassionate people as they gained a better understanding of the differences between us as people, and what I needed to do to be like them.

I became good at using computers throughout my Primary School years as I was allowed to stay in the classroom and use them while the rest of the class played sport, or participated in other activities that I couldn’t be are part of. I am thankful that I had the opportunity to use computers so extensively because they have become a big part of my life today. In fact I don’t think I would be writing this without my computer.

I have a lot of friends whom I talk to on the internet. I used to hate it at school when I was made to go and watch the rest of the class play sport because it highlighted to me the fun I was missing out on, and seemed like a waste of time. So using the computer during that time was a major benefit for me in terms of self-esteem and developing and using my skills.

Because I was only a child, and my parents and the school kept me out of decisions regarding my experiences as much as possible, there are really only a few major events relative to my DisAbility that I can remember about Primary School thus. This is to be expected when you are only five years old. But as I grew older it would have been nice to have more of an input into the decisions regarding my schooling and therapies.

My physiotherapist works on the theory that if she makes the therapy fun a child will be more likely to cooperate. One of the exercises that I had to do was called push-ups. To do these you lie on the floor, on your stomach, and push yourself up off the floor using your arms. One of the ways When I was in grade four this exercise was made fun by having a push up competition. I had to ‘train’ for it. I didn’t win, but it was a good way of letting the whole school community know some of the things that were a part of my therapy. It also gave me a sense of achievement.

Throughout primary school I had two integration aides. One worked with me on Mondays and Tuesdays and the other throughout the rest of the week. They both used very different styles in working with me. For example, each lunch time my aide on Mondays and Tuesdays would either organise some kind of activity for me and my friends, or keep me in the classroom with her. In contrast, my aide for the rest of the week would leave me with my friends and allow us to play together. While the activities I did with my aide on Mondays and Tuesdays were fun, and probably helped me to develop my hand/eye coordination and other skills, I feel that the days where I was left alone with the other kids were more beneficial because they allowed me to show the others that I was capable of being with them without an adult, and let me develop friendships of my own. I am sure the aide on Mondays and Tuesdays had good intentions, but looking back I wonder if she was, in a way, forcing the other students to spend time with me.

Another significant event I recall was when people with DisAbilities visited the school. The first time they came I was in Grade one or two. A man with Cerebral Palsy was going to talk to the grade sixers, but I was allowed to attend, along with two friends. At the time I thought I was really special, but looking back, I wonder if it was a way of showing me what my life may have been like, and perhaps teaching me skills that I may have needed. Fir instance,we got to try writing with our mouths and at that point I couldn’t write.

The next time a person with DisAbilities came to the school, I was in grade five or six. This person was a quadriplegic and he specifically asked to meet me, but seemed disappointed when I explained that I was born with my DisAbilities. When he asked if the class had any questions one girl asked how he managed in the bathroom. He seemed embarrassed to be asked this and didn’t really know how to answer, saying “What do you mean? The same way you do I guess.” The girl who asked the question confessed later that it was something she wondered about me, but didn’t want to offend or upset me by asking. I assured her that she could always ask me questions, and if I didn’t want to answer I would tell her so. I believe that it is important for people to ask questions about my life. By giving them insights to my life I am more likely to get them to understand life for other people with DisAbilities. This knowledge should help people make the world more accessible for people like me, and hopefully to become more compassionate regarding differences between people.

Walking with wheels Post 1

Hi All,
Some of you would have read this before but I thought I would post it again for those of you who haven't. It is a work in progress about my education experiences. It is quite long so I think I'll divide it into several posts.

Walking with Wheels

A guide to providing improved access to the school community for students who have a DisAbility. The guide is designed to inform, students, teachers, parents and other interested parties.
Some quotes that inspire me

"How is it that you and I are here, sharing these words at this exact time and place? It sure isn’t chance. Whatever the answer is, it's divine. Live today as if it calls for cake."
- Julianna Banana

"I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do."
- Edward Everett Hale

I would like to acknowledge the assistance of Lou Tehan, Cate Whitehead, Cheryl Salmon, Peter Whitehead and Marion Monas in the creation of this book. I would also like to thank Heloz for her help in editing it.

I would also like to acknowledge all the people I haven’t mentioned who have shaped my education experience in some way, whether it be in a positive or a negative way. You know who you are.

It is a pleasure to be invited to write the Preface to Karen’s story. I believe that Karen’s reflection on her experiences as a student within the school system has provided valuable insights that may well serve to bridge the gaps in existing systems mainly due to oversights and ignorance in the general community .

The information included will hopefully raise our consciousness in regard to the obstacles that exist in school communities and, with simple consideration, are easily addressed. Karen’s story may also imbue the student who is embarking on the education pathway, and her/his family, with more confidence in voicing their needs. It is hoped these voiced needs are met in a supportive and understanding environment that has an increased awareness of the humiliation of being singled out by obstacles within both the physical and social environments of schools and communities in general.

While policies and protocols exist around equal opportunities for people who have a DisAbility, it is easy for complacency to creep in. The existence of policies requires vigilance in order that the rhetoric matches the reality in relation to implementation of policy. It is important to note the generalisations that exist under the policy umbrella and that the “one size fits all” approach will often require some fine tuning. Karen made a pertinent comment when she said ‘All you have to do is ask me’. Karen states that the best way to make things work is for the able bodied person to put their own fears and hesitancy aside and directly communicate with the person about their needs, the obstacles etc., and work out solutions together. Suchan approach de-stigmatises and is non patronising, creating a culture of inclusivity.

I commend “Walking With Wheels” as another vital contribution to bridging our often unintentional human failings in communication and sensitive support due to the whirlwinds of our busy communities.

Ms. Lou Tehan – Creative Arts Therapist

Grampians Community Health.

Saturday, March 24, 2007

rambling bits

Hello there everybody,

I’ve been thinking about a lot of things in the past 24 hours since I started this blog. As Emma says I’ve certainly joined the “dark side” now, but am I glad that I have done it? Yes. Until very recently I didn’t know that there was so may blogs out there about disability and in particular CP. In truth, I was thinking about starting a blog long before I was asked to.

I’m not even sure that anyone will even read this, nor am I sure why anyone would want to. I’m not a great writer and I can’t always put the humorous spin on stuff the way people like Emma seem to. I guess all I can do is offer my own opinions/experiences and people can choose to read it and take away what they want.

I’ve also been thinking about the fact that I am happy to answer people’s questions and I don’t even mind being stopped in the street and asked questions. Sometimes I wonder why it doesn’t bother me and I think it might have something to do with the fact that I see the questions as people being interested in me and what I have to say.

Today I have spent some time researching Baclofen (and I’m still kinda confused). I’ve also been reading about a therapy called ABR. I’m not sure I understand it but it probably doesn’t matter because I live in Victoria and it doesn’t seem to be available here.

Anybody who wants to can link to my page. I’ll try to write a more exciting post tomorrow but I have visitors coming soon so I’ve got to go.

Keep smiling everyone.


Friday, March 23, 2007

first post

G’day everyone,

Well, this is my first post in my exciting new project. The idea behind this blog is that I write about my experiences as a young woman with Cerebral Palsy (CP) and anything else disability related and hopefully it will become a resource for people with CP, their parents, carers, friends families, teachers and basically anyone out there who is interested.

I was asked by my counsellor at the local community centre to write about CP and any related disability issues from my point of view so that it could help raise disability awareness in my community. The only problem she had was that she wasn’t sure how to get my writings out to the community. I suggested a blog because I hope that people who read it will add their own thoughts and experiences in the comments section and this will become an even bigger/better resource.

I’m not sure what I’ll write about first, or how often I’ll write on here. I thought I’d write a little about me and you can learn more and get my medical updates at . if anyone has any comments or questions or anything to add about what I write up here at any time please leave a comment in the comments section of any post.

My name is Karen and I’m 23 years old and I live in Australia with my parents and dog whose name is Flea and some goldfish. I attend the local TAFE, and university. I love to read and write, watch movies, listen to music and I’m a motor sports fanatic. My favourite colour is purple.

I have a type of cp called Spastic Diplegia . it affects my legs and also my right arm. I am not affected by the CP intellectually in anyway although there seems to be an automatic assumption by the community that I am- that’s a post for another day. I use a wheelchair to get around all the time and have both an electric and a manual chair.

If anyone has any questions or anything you’d like to ask me please leave a comment. I will write again really soon.