The Crooked Truth
The Frank Reality
04 May 2020
Written by Youth Alliance Co Chair Jordon Milroy
What I’m about to say does not reflect the overall Cerebral Palsy Society of New Zealand. It’s a blog-style prose directed towards personal observations within our Society. Society being that of the fortunate association that binds us as New Zealanders living with Cerebral Palsy. The personal belief that to communicate our individual points of difference in the way that we see ourselves as members of a unique society needs to be addressed by the leaders of this Society. I am not assuming that I am a self-anointed leader but as a representation of the professional and self-choice pathways which I have chosen myself.
From the first day arriving into New Zealand, I found myself on the back foot and an outsider in the disability community of New Zealand. This fair-skinned Samoan who could be seen as disrupting the overall flow by climbing towers, raising awareness of a disability that some may see as not entitled to raise awareness of (wheelchair users cannot climb towers, so why are you raising awareness of CP?) to the daily resistance which falls upon my desk as a youth advisor for out Society. The resistance of talking heads which criticise the Freedoms project, driving abilities, and the overall representation of youth with Cerebral Palsy.
Let’s be frank, at times having Cerebral Palsy sucks. All I want to do is stay in bed and cry whether it’s pouring cereal all over the kitchen floor, falling down steps, the daily cuts and bruises – it sucks. I do not want to entertain the idea that it’s all peaches and roses when people look at the impressive, positive image on social media. The sheer hatred of being labelled ‘inspirational’ for getting up and going to work in the morning grinds any one’s gears to a halt. Yes, I was an angry 21-year-old with a point to prove by climbing towers and putting my bent knees on the line and my disorientated walk as suffering today, the fact that living with constant discomfort and having to repeat every second word because of my slurred speech doesn’t warrant remaining on the pity potty for the rest of my life.
Practical skills to deal with:
It has come to my attention that nobody wants to be disabled, that’s a fact of life. If you give me a magic pill for a miraculous cure of this life-altering disability, then I will seriously consider handing out to each one of you. But the reality is that there is no pill means that CP will be around until the day you leave the Earth, sorry for the reality checked. Now to manage it, you can become bitter and twisted in the fact that you may not be able to run, hop, dance, or even pour a cup of tea properly and focus on the negativity of the inaccessible world around you, the daily buffet of misconceived ideas of CP by society which will end up as a very pessimistic outcome. Which will lead to the constant nit-picking of the organisations which are trying to do the best to represent everyone who lives with CP around New Zealand.
This rabbit hole approach needs to end with you as a young person with Cerebral Palsy, it’s too late for a 30-year-old like myself. You are a valued member of our Society. We can give you every tool under the sun to help combat this perceived chip on your shoulder and help facilitate meaningful change without becoming a cynic or having a cynical perspective which roadblocks any pathway to change.