April 2004 - Victoria Carpenter

After the excitement of March it is not surprising that April was a little quieter and gave me a bit more time to reflect on things.

March concluded with the rousing Vodafone New Zealand Foundation get-together where we met with last year’s winners and talked to people about our goals and our frustrations, it was very motivating to see the 2002/2003 people with a full year’s work under their belts and fully come to terms with how much can be achieved in a year if you are dedicated to making a difference.

Following this we had the Truck Show at Motat and it was a stunning event with fantastic support from the Ferrari Owners Club. You might well wonder where the link lies between trucks and Ferraris, their support of the MDA! A percentage of the gate takings went to us, and the Ferraris were quick to conceive of a fundraising venture: selling photographs of show visitors with an Enzo - a very special Ferrari of which there is only one in New Zealand.

My biggest challenge so far this year was met and conquered. I finished my communications plan for the MDA. This was quite a lengthy document, in which I had to rein in my aspirations for the organization as a whole, and tailor my goals to be achievable in a year. In accordance with protocols I submitted my proposal to our governing council for their vote and it went though unanimously!

Wow, I am on my way-and now I know where I am going to and how I am going to get there. For further confirmation that I was on the right track I sent my plan into the Head of Communications and Public Relations at AUT. I guess I must be doing o.k. because he invited me in as a guest lecturer for his third year class about the role of communications at a not for profit. Another opportunity to get the Muscular Dystrophy name out there and talk about the issues.

This month we also finished the filming of Muscular Dystrophy’s ten-minute video. One of the ‘stars’ is my father who traveled up from South Wairarapa. The focus of his segment was all the extra considerations required for those with Neuromuscular conditions who wish to travel anywhere. An example of this is that my parents drive up to Auckland (8 hours) because it’s easier than trying to catch a plane (1 hour). The question is how can you get on a plane if you haven’t got the muscular strength to get in and out of your wheelchair and into the seat on the airplane unassisted? (By that I mean that you can’t really expect the flight attendant to ‘lift’ a grown man.) You can’t.

I thought back to all the flights I have taken in my life, I have seen one disabled person on a plane, once, and that guy had so much strength in his upper body he swung himself in and out of chairs no problem.

Later in the month a couple of my colleagues went to Australia to compete in the wheelchair sports and they had their caregivers transfer them between chairs. Basically if you can’t transfer yourself, you can’t travel on planes.

This is all food for thought following on from last months situation where a man with MD was given no choice but to crawl onto a train, I am becoming increasingly aware that disability is not one size fits all and yet many of the solutions put in place by service providers assume that disabled means in a wheelchair with strength in your upper body. Increasingly also, I am realizing how important it is to get the Muscular Dystrophy identity clear and out there.

This has been a month for thinking and strategizing, bring May on!

Victoria

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