Babies & Children

‘Actions not words’ – Gemma’s experience in affecting change in the disability community

20 Nov 2018

‘It action, not words that create change’. 

I recently heard these words from one of New Zealand’s most successful businesswoman at an event dedicated to celebrating and strengthening Kiwi women in business.   It made me think about how true this is of the disability sector also and how easy it is to nod, agree and then do nothing!…’ 

Our Family Support Manager, Gemma, shares her views on how to be an active voice in affecting change in the disability community and why having your say is vitally important.

Having a child with a disability I reflect on in the first few years I often found myself sitting in a place of frustration, it’s so easy to tell people what needs to be done and then (I’m the first to admit to this) not do anything. For the most part, I think it was the fear of no one taking notice, the fear of failure and the overwhelming sense I was one person in such a big world. Fueling those fears were the attitudes of people in positions of authority and power that really couldn’t give me answers to the questions I asked. Another was other people’s lack of understanding towards cerebral palsy which meant they would shut down or ignore us completely I felt tired, emotional and didn’t know where to turn and so I gave in to my frustration and anger. But with time comes experience and knowledge, and about five years ago I came to the realisation that I had to help myself, I had to stand up and take action.

When my daughter was diagnosed with CP, I was told that I would need to become her greatest advocate, that I would have to fight for everything. I sat listening but not really understanding what the health professional in front of me was saying, how could I, we were right at the beginning of our journey and I literally didn’t have a clue.

Now those words mean so much to me, they motivate and inspire me to make those changes and to put my words into action.

It’s definitely a big part of why I took on my role at the Society. I wanted parents to have a voice, I want us to come together as a bigger community to take on things that on our own would seem like a mountain but together are just small hills we have to navigate.

Change will happen.   It may not happen fast, but if we take that step together it’s a step in the right direction.  But to instigate change we have to engage and act when opportunities are put in our path. 

Some of the things we can do as a collective right now to start moving into a place of action are:

  • Take part in the Universtiy of Auckland CP Survey – we won’t see change unless there is evidenced-based research to support it 
  • Share you concerns/views about service provision at Starship – join the working group, by emailing Gemma
  • Join the CP register – help build a more complete picture of CP in New Zealand