What is it about?

The rollercoaster adventures of parenting three kids, dealing with disability and mental health - and discussing disability discrimination and how to tackle it.

Friday, 11 February 2011


The day has come at last!

We tried many many times over the last few years. We kept slamming into a brick wall which seemed to consist mainly of money.

With "we" I mean parents. Parents of children diagnosed with Cerebral Palsy; some of them with the spastic type, some with the floppy muscles, some with a bit of both. Many of us were not exactly happy with the name. I mean, we all know how it works, derogatory words will always be with us. But it is bloody hard to tell your child that they should not take anyone call them "a spastic" when you then take them go The Spastic Centre for their weekly therapy... Most frustrating though is that the organisation in it's name is not inclusive. I mean, society does a very good job of excluding people with disability. Surely a service provider should be the one place that is inclusive...

As I said, many parents were not happy with the name. Some of us met with some of the organisation's senior management in 2003 and our discontent with the name came up. We were politely told to bugger off.

So we changed the name ourselves. In our family The Spastic Centre became known as The CP Centre. Sometimes we only-half jokingly referred to it as The Floppy Centre.

And being aware of the money, I wrote my will to leave money to the organisation only if it changed it's name. Told the fundraising people I'd not give them a cent until they changed their name. I think some other families did the same.

In any case, the message did get through. I remember another meeting in 2008 I think it was, where the same issue came up again. Their was some acknowledgment that the name had outlived it's usefulness and their was a gradual transition in place. The organistion had just changed it's logo to have Cerebral Palsy big on the too, and TSC in smaller letters underneath. We were told It would evolve from there.

And so now, finally, it has happened.

The Spastic Centre of NSW is now no more.

We now have the Cerebral Palsy Alliance.

I'm not crash hot about the Alliance bit. Sounds a bit like a political party to meWho exactly is in this Alliance? Or they are in alliance with who exactly? Certainly not parents!

But hey, better than The Spastic Centre eh?!


Susan, Mum to Molly said...

I agree that its an improvement, but also agree that they could have done a lot better IMO.

They also should have realised that people will always use the acronym and CPA has nothing to do with CP and everything to do with accountants in this country...


So, is there a new big sign up at Allambie??

Katie said...

Just thought you might be interested in this:


BlogFront said...

Hi Heike,

BlogFront.org is committed to uphold the quality standards of blogging. We strive to maintain and promote only the most credible blogs in their respective fields.

Spam blogs or "splogs" has been a problem for some time now and people are getting confused about which blog to trust.

We would like to thank you for maintaining such a reputable blog. We know that it takes time, effort and commitment to keep such a blog and as such, we have added your blog as one of the top Disability Blogs.

You can see your blog listed here: http://blogfront.org/disability

You can also claim your BlogFront Top Blogs badge at http://blogfront.org/badges/disability

Thank you for keeping your blog credible. Let's keep the blog revolution alive!

Maria Blanchard
Blog Revolucion

Glee said...

YAY YAY YAY WELL DONE TO ALL OF YOU!!! hip hip hooray. In SA we had a place called (wait for it) "The Home for Incurables". A huge institution in a 9 storey building run like a hospital. It's now called Highgate Park and has been devolved from 600 people to under 100 but has stalled cos Disability SA won't provide the funding for support for people to move out. The places for them to move to are there and the Govt is paying rent for them to sit empty. Imprisonment I call it!