Friday, June 17, 2011

New Friends - Part 2. SSPA

As I knew that Hong Kong has no organisation for people with dwarfism, I have been following the webpages of the SSPA, and in particular the NSW/ACT branch webpage. I was hoping that when we were back in Australia, there might be a function that we could attend. I was excited to find out that indeed there was! Right in the middle of our trip, there was a weekend planned in Canberra, just a couple of hours drive from my parents' place. 

I  think that it is important for our family to have at least something to do with other people with dwarfism for a few reasons. Firstly, it helps us to stay up to date with the latest medical issues that may be relevant for Maddy. Secondly, it can help us to be able to know what products/devices we can use to help Maddy gain independence. And thirdly, it can help to "normalise" dwarfism and help Maddy to feel as though she's not the only person with dwarfism in the world. Many of the people I talk to online have had very positive experiences with organisations such as LPA and I had high expectation of the weekend.

We had a pretty good time at the weekend and we met some amazing people there. Most of them, as I expected, had achondroplasia. I was hoping that there might be someone with DD, or someone who knew someone with DD, but I was surprised to hear that most of them didn't know anything about DD at all, and the leaders didn't think that there were any active members in the SSPA with DD. I wasn't really expecting that - I don't know if it's similar in the LPA or not. I do know that there are members of the LPA with DD and they have specific groups and workshops at their national conferences so it's probably not as bad there...

I would like to keep up some contact with the SSPA. I don't know if we would be going to every single meeting if we were permanently in Australia. Maybe once every year or two. I know that there are benefits for us to maintain ties with the SSPA but I don't plan to be "running for office" there any time soon ;) Going to the event made me realise that yes dwarfism is a part of our lives, but it is just one small aspect. I don't want dwarfism to be the all-encompassing theme of our lives. 

I grew up being very involved in church. We went to every youth camp and each year in our summer vacation, we travelled to a random city in Australia for the church national conference. It was a huge part of our lives and I loved it. I don't think that anyone could be THAT involved in two separate organisations. You'd either have to be just half-involved in both of them or completely involved in one at the expense of the other. You can only saddle one horse, so to speak. And I don't know if I want to completely saddle the "dwarfism horse".

All that to say, we had a great time at the SSPA weekend. It wasn't completely what we expected - but it was still good and beneficial. Hopefully we'll be able to see more of them on future visits back to Australia :)

1 comment:

  1. Well done you. I love that quote:
    yes dwarfism is a part of our lives, but it is just one small aspect. I don't want dwarfism to be the all-encompassing theme of our lives.

    I would say exactly the same about ADHD in our lives. It is part of it, but only one small aspect and not the all-encompassing theme!