Living with cerebral palsy – Phin’s story

1 October 2020

1 Oct 2020

World Cerebral Palsy Day (October 6) is a movement of people with cerebral palsy, their families and the organisations that support them, across more than 75 countries.

All around the world, people and communities have had to adapt to big changes caused by COVID-19. People with cerebral palsy have mastered dealing with change, breaking down barriers, and coming up with creative solutions their whole lives.

Phin Meere, our Communications Officer, Community and Disability Services, shares his insight into the disability.

What does World Cerebral Palsy Day (WCPD) mean to me? I’ve given it a lot of thought, as I live with cerebral palsy every day, so every day is World Cerebral Palsy Day for me, I suppose.

Most of you reading this will not have cerebral palsy but will want an insight into what life is like. It’s difficult insight to give, as it is just part of my life. It is natural to want to pigeonhole people or make my experience comparable to somebody else’s because we both have cerebral palsy. It’s not really, my experiences are my own and will differ from other people’s, as cerebral palsy affects people in different ways.

I have often felt people are treated differently because they see I’m different, and somehow that makes me less than what or who they are. It’s like because I’m physically different to them therefore I must be different in other ways, so people assume they can talk down to me. As a younger person, I would just put up with this because I believed I was different from them. I would compensate for this learning how to be social and put people at ease by using humour. I wish I didn’t have to do this, as people can just feel comfortable with our differences, to accept us for who we are.

My achievements this year have been trying to live through COVID-19 while maintaining my independence, and using my NDIS supports to achieve this outcome. I’m trying to find ways of being able to cut my fingernails without asking family to do it for me. I may have to go to a podiatrist or get a pedicure or a manicure regularly. It is probably the smaller things that most of you would take for granted, that we can physically struggle with.

If you see we are struggling with something, it is natural to assume we want help to overcome it or fix the problem. It’s an assumption that you are making rather than a reflection of what we need or want. Never assume, always ask if we need or want help with something. Respond by helping us with our needs not what are our assumed needs.

The greatest thing you can do this WCPD is to listen to us! Happy WCPD, everyone!

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We here at VMCH respectfully acknowledge the traditional owners of the lands on which we gather, and we would like to take a moment to honour the fact that we live on the lands of the oldest civilisation in the world. We acknowledge the stories, traditions and wisdom of Aboriginal and Torres Strait Islander peoples, and pay our respects to their elders past, present and emerging.