Talofa! I wake up every morning with uncertainties. Will someone arrive to help me today? I rely heavily on the support people to get me up so I can get on with my week.  

Lusi Faiva at Te Putanga Toi Arts Access Awards 2021When the system fails me and no one arrives, it turns into a waiting game to find someone who is available to come. 

These are the challenges I face every day. I’ve been left for a long time without any support for hours, even days. It happens, often unexpectedly, throughout the year when the communication breaks down each time. It makes me feel so anxious and  angry because they allow it to happen again and again.

Many times I have voiced my complaints. The slow performance and lack of professionalism of these support providers can be pretty poor and improvements are still out of reach.

I get frustrated that it doesn’t even register with them how difficult it is for me to be heard. It is a slow process to make a complaint about this. Going through all the procedures with health authorities and the Health and Disability Commission need to be changed to make it easier for people like me.

"I want to live my life on my terms"

People like me who just want to live life to its fullest. I want to live my life on my terms with determination and I want to keep my dignity intact without feeling pity for myself. Also, I want to feel secure, knowing I will be supported every day for the rest of my life.

Lusi Faiva performs at Te Putanga Toi Arts Access Awards 2021My art practice has suffered from the hurdles I face, trying to get the consistent support I need.  Most of the time, I miss out on things that are important to me and things I have booked. It’s a huge problem when I am left to defend for myself without any support.

There are other people who are in the same situation as me but can’t talk for themselves. They just miss out on the support we all deserve and therefore can’t do many of the things they would like to.

Something has got to change so there is better support for people in the community, and more awareness about the funding that’s available to ensure it’s used properly for our health and support systems. 

I’ve got the determination to live equally and independently in the community. It’s my right to have control over my life forever.

"Honoured and proud to be recognised for my contributions"

In the past year, I have won several awards, including the Arts Access PAK’nSAVE Artistic Achievement Award 2021. It’s been astonishing to receive these awards, and I feel honoured and proud to be recognised for my contributions to the performing arts.

I really appreciate the effort and love I have received from the people who believe in me and have supported me to develop my dance. I’m grateful that I have got to live my dreams and do something that I am passionate about.

As a performer with a disability, I face challenges every day – especially when my support providers don’t turn up.

But to those people who said I couldn’t talk or dance, I say I have proved them wrong. I believe it is possible for anyone who has a disability to achieve their dreams in this able-bodied world! Dreams come true eventually. I’m living proof of that.

 Faafetai lava. Thank you very much.

Waking up with uncertainties


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