Life with cerebral palsy and the drive to make a difference
Kristy Trajcevski opens up about what it’s like to live in her uncooperative body. The 35-year-old with cerebral palsy is now working to give choice and control back to people living with disability.
My name is Kristy Trajcevski, I’m 35, and I guess the first thing people notice about me is the fact that I’ve got some pretty sick wheels. (I once wrote on a dating site profile that I use a wheelchair and my cousin admonished me for my poor phrasing in regards to this!) So ‘sick wheels’ it is!
I use a wheelchair because I was born with a disability called cerebral palsy
, a group of movement disorders
which affects people in all different ways. It’s very common, affecting about 34,000 people in Australia and 17 million worldwide.
When I was born in 1981, It wasn’t expected that I would walk or talk – let alone become educated in a mainstream school. The most frustrating thing about my life with cerebral palsy is looking at others without disability and thinking: What’s really so different about me? Why do I have to fight for support that would make my life easier?
People often ask me what it's like to live with cerebral palsy. Personally, I find my disability pretty annoying and frustrating most of the time. I need help with most activities of daily living from the very personal to the less obvious like holding a book and turning pages… I can’t tell you how many times I have felt less-than and inadequate because of the way I get treated by other people and service providers just because I have a disability.
But enough about how hard life is and what I’ve had to deal with… that’s boring and really not helpful to anyone. I’d rather talk about the things I have achieved that everyone else said I wouldn’t be able to do.
Now, I don’t want to make this article about how inspiring I am. The fact is, that I, like most other disabled people, just want to be able to have the same access to opportunities that those without disability have access to in Australia. These include a proper education, housing, and access to services. I have been lucky enough to be in the right place at the right time, so I’m in good position compared to some others.
My education is something I am extremely proud of. I have Law and History degrees. These two subject areas are in a way related, because they both have a heavy emphasis on the written word. I like to write, and I like to interpret words. My dream is to use my intellect in a way that will help people live the kind of life that every other person expects to. That is, with a purposeful, valued, role in the community. I have worked so hard most of my life to make sure I am part of the community. I am not alone. People with disability do indeed have goals and aspirations.
Managing cerebral palsy includes physiotherapy, occupational therapy, and speech pathology. I have had to access these services regularly throughout my childhood and adolescence. Before the National Disability Insurance Scheme (NDIS)
was introduced, it was a struggle for me as well as many others to get the right support and equipment that living with a disability sometimes requires.
In the past, because of the idea that people with disabilities needed to either be medicalised so they could be cured, or were only worthy of charity, it was very difficult to get respect from service providers. We, along with our parents, families and carers were often made to feel like we were worthless, going cap in hand for funding. For example, once I turned 18, I found it difficult to get occupational therapy assessments and funds for new equipment. There was nowhere to go apart from the hospital system which can be pretty impersonal and clinical. You don’t always want to go to a hospital, especially when you are not actually sick!
Sadly, for some people it’s still a struggle as they try to navigate a new system and a new way of thinking about how we support people with disability. Hopefully, this will gradually change as new providers like Bupa start to develop innovative ways to support people
, and people get used to this new market driven system. This system is based on individual needs while taking into account their goals and aspirations.
People need to seize the opportunity and start thinking of themselves as valued consumers, with knowledge, ideas, and goals, instead of hapless pawns limited to what a service provider thinks that they need! Services also need to become more responsive to the needs of the client too.
This is why I am happy to be working as a consultant on the new Bupa Therapy centre
, this video explains what it's all about.
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The aim was to create a one stop shop where people needing long term disability support or rehabilitation can access physiotherapy, occupational therapy and speech pathology (also known as speech therapy) all in the one centre. The first one is opening in West Melbourne.
Through my work, I’m able to continually remind Bupa that to be able to compete in this new marketplace, they need to show the disability community that they can offer a consistently great service to all people that come through their doors. That service needs to be innovative and responsive to the individual needs of the NDIS participants, families and carers.
I hope that one day people won’t be surprised that someone with a disability is a doctor, lawyer, teacher, café owner/worker, or any other occupation. One day this will be the norm.