My name is Claire. I’m a mother of a lively nine year old, a local councillor, an author and a life coach.
I also have a form of muscular dystrophy called Facioscapulohumeral, I was diagnosed at 14.
Muscular dystrophy is a degenerative condition. When I was diagnosed they told me a wheelchair would come one day. Over time my legs became weaker, it because more difficult to walk and climb stairs.
In my 20’s it affected my shoulders and my hands. I started using a wheelchair when I was 29.
My daughter and I work together as a team. My Mum lives nearby and she comes over, and is the extra set of hands that we need.
Dinner is the main meal that I struggle to prepare these days. I wouldn’t trust myself with a pot of boiling water any more. It’s risky. I simply don’t have the strength in my hands to chop. If I did try, I wouldn’t have the strength to eat afterwards and I would have to rest. My Mum takes on cooking of the evening meal. Having Mum live close to me is extremely important. She is that backstop in case any thing goes wrong.
My Mum is 71 and she also has MD, it’s a genetic condition. It’s really started to kick in with her now. She lives with pain on a daily basis. She has trouble walking and lifting her arms. But she is my main carer.
Unfortunately I don’t qualify for any extra help. I have two hours of help in my home once a week, that’s all I’m eligible for. I’ve requested more but it hasn’t come to fruition.
There was a period of time when I couldn’t access my own home, I couldn’t get in my own front door because I could not lift my arm to reach the key in the lock. I had to get in through the side gate, and come through the back door. But I couldn’t put a padlock on it. I applied for some funding for alterations to my front door so I could come in and out. It took 12 months from the first phone call to the new door being fitted.
While I didn’t have a lock on my back gate, I was vulnerable, and I had someone break into my house while I was home.
It was very scary – being a single woman on my own and hearing someone coming into my home in my back window. It took me quite a while to sleep again after that.
The system is not written for people with MD. You may get five people with MD, but we’ve all got slightly different needs depending on where our condition is. The individuals are not catered for. The system is too inflexible.
I’ve been told, you’re not really disabled enough. What does that mean? Not disabled enough! I have a degenerative condition; I’m not about to get up any time and start dancing. I need this help at home so we can live the best quality of life that we can. It’s just basic every day stuff.
I recently tried to apply for air conditioning funding. But only one room could be funded. With MD I have trouble regulating my temperature. Once I’m hot, I’m hot. It’s hard to sit in a wheelchair when you’re hot.
When I couldn’t get funding for AC for the house, I wanted to pay for the system and be reimbursed, but they said it would take months. My body won’t cope with living that long in 38 degrees.
It makes me feel very devalued and frustrated. Don’t I count?
My mother who is 71 is my main carer. But when she leaves I can’t access any more support in my home. I’ve been told I can go and stay in a respite facility. But what do they want me to do with my daughter? She can’t come with me. So I said no – you’re punishing me for being a person with a disability, you’re taking me away from my friends and my network and my home. That’s being punished. If we had an NDIS in place, those things wouldn’t happen.
I’m an Australian who contributes. I work. I’m a mum, I volunteer. I just want to get on with my day. I want to know that what I contribute to my community counts. And for me to be able to do that I need to have some support structures in place. It shouldn’t be that hard.
If Australia had an NDIS when I was diagnosed at 14 I think things would have been very different for me as an individual and a family.
It was a very traumatic time being diagnosed with a degenerative condition, and we couldn’t even process that, let alone thinking what I would need.
If we had had an NDIS as a family, we would have been able to plan, we would have been able to put support in place before we got to a time where I couldn’t get out of bed, and my 9 year old is trying to get me up, and we’re in a crisis.
If we had the NDIS in place, the stress would have been taken out of all of it.
An NDIS is so important because it gives everybody a fair go and that’s what being Australian is. I want to contribute to my community, to do that I need support in place. The NDIS will support me as an individual. It will give me a quality of life.
Claire, mother to 9 year old daughter, councillor, life coach and author
An NDIS is so important because it gives everybody a fair go and that's what being Australian is all about. I want to contribute to my community, to do that I need support in place. The NDIS will support me as an individual. It will give me a quality of life.