International Day of Persons with Disabilities

Mr HUGHES (Giles) (15:35): Earlier today, the member for Morphett moved that this house recognise 3 December as the International Day of People with Disability, celebrate the achievements of those with a disability and recognise the contribution they make to our communities. At the time, I rose in support of that motion and spoke about two people in my electorate, Cyanne and Zia Westerman.

Cyanne and Zia are both profoundly affected by a condition call limb-girdle muscular dystrophy type 2 I. I met the twins before I was elected, and I was incredibly impressed with their spirit, their intelligence and their incredibly strong desire to participate in the world around them despite the profound disability they suffer from. Notwithstanding that profound disability, these two people have enormous abilities. They have a real contribution to make to the community of Whyalla and, I believe, to this state, and are a brilliant example of two people who are fully committed to addressing the barriers they face.

I did not think that it was particularly appropriate for me today, as an able-bodied person, to speak about policy and initiatives and all the things we are doing to assist, whilst also recognising that there are real gaps and real needs that need to be met. What I did do was quote from a transcript. Zia had prepared a document and called it, 'A simple day in the life of Cyanne and Zia'. As part of the debate today, I read part of that description of their life, and I want to use the next few minutes to finish off the description of one day in their lives. So, in Zia's words, I will continue:

Every aspect of our lives is either a struggle to make people understand our situation or a fight to try to make people see that we need the help, not just because we want it. Take our two electric doors at home for an example, we had to pay a couple of thousand each because the disability system sees the doors as a luxury. It may be a luxury for some people, but for me and Cyanne it is a major safety issue. If we didn't have these electric doors we wouldn't be able to get out of the house. I can't open a door because I don't have the strength. So how can I get out if there's a fire?

One of the biggest issues I face is not being able to go to the toilet/shower while I am at the hospital. The toilet/shower facilities are not big enough to fit a change table and a lifter (this is also the same for every disabled toilet facility in South Australia). I would very much like to keep my modesty and get undressed all in the one room rather than being wheeled naked down the corridor with a sheet wrapped around me. I don't think you would appreciate it if you saw one of your work colleagues walk naked from room to room to use the toilet or shower. I also have to bring my own sling because the slings they do have are for the majorly obese people, including their toilet chairs being for all males and aren't padded—I can't use the chairs because my skinny bum falls through the hole.

Cyanne and I don't like using the taxi service because it is just another thing to organise and to predict what time you need to be picked up and dropped off. I book in advance so I know that they are likely to arrive on time due to the high number of people in wheelchairs using the taxis.

Cyanne and I can't even go out together because the taxis only hold one wheelchair at a time, which means that the taxi has to drop one of us off and then go back for the other. It also means we have to pay each trip because we both can't fit in one taxi. So when Cyanne and I went out the other day, we booked a taxi van. My carer and I arrived at the destination first and then waited for Cyanne. The taxi driver decided to do another job before picking Cyanne up. We were not happy as Cyanne was over an hour late which put us in a horrible mood for the rest of the day. However, on the way back they organised for two taxi vans to pick us up.

I will continue my speech another time.

Time expired.