Name Lusi Faiva
Age when entered care 2 years old
Type of care facility Disability facility – the Kimberley Centre in Taitoko Levin
Ethnicity Samoan 
Currently Living in a State house, with support workers visiting daily. Lusi uses a communication device.

I’m a proud Samoan woman. I am an artist, a dancer and a passionate freedom seeker.

I was diagnosed with cerebral palsy at 2 years old. There wasn’t much support for disabled children and their families then, so the doctor arranged for me to go to the Kimberley Centre. He said it would be better for me.

I can only remember a small amount from my years at the Kimberley Centre. The institute felt dark and cold. I shared a room with other children, and during the day we sat in the recreational room. There were people of all ages with different disabilities in the shared space but there were no activities going on – we hardly interacted with each other.

It was assumed that I didn’t have the ‘mental capacity’ to communicate, and that I had an intellectual disability. I didn’t know how to express myself and there were no tools or strategies offered to me to communicate with others around me, so that I could express what I wanted and needed. Nobody thought to ask me what was going on for me. I was under 5 years old but old enough to remember how trapped I felt in myself.

No one talked to me about my Samoan heritage at the Kimberley Centre. I felt like people didn’t know or care about my Samoan culture. There was no respect or effort to recognise me for who I am.

At the Kimberley Centre, the nurses didn’t look after me properly. The only time they came on to the ward was to give us our medicine. Once, I fell and broke my ankle because no one was watching me. If I had received better care then, my physical health would be better today. I never received any specialised support until after I left, even though my mum had been told that being there would be better for me.

I think the concept of institutions is broken. They aren’t set up to care for disabled people, because they’re built on a system that dehumanises us. Not much has changed for how current State care works. It’s about medication, changing, showering and other very clinical procedures, and doesn’t take into account the needs of human connection and affection.

There was a kind of school scheme at the Kimberley Centre, run by two staff members who were a couple. I think I was just 5 years old when I started. They visited the centre every day and they were the only ones who taught us kids. They recognised that I was switched on and started teaching me how to read and write and express myself, finally. It was strange to see words in the beginning, but I was a fast learner and as time went on I could understand what they were teaching me. I had a blackboard with chalk that I was able to hold and they taught me how to spell. It was the only time we could do other activities like games and drawing.

Those staff members were kind and gave their time to come and teach us and play with us. I remember them dearly. They kept in touch with my mum and when I was 7 years old, they convinced her to take me home. My mum had never visited me while I was in care, and when she arrived to take me home, I didn’t know who she was, so I felt nervous. I didn’t see the two staff members again for a long time after I left the Kimberley Centre but they remain significant people in my life – their regular interactions with me taught me that I was someone, I was Lusi and I deserved to be loved.

Returning to live with Mum was challenging – she was in an abusive relationship and living with his family was confronting and scary. I went to school and liked it, because it gave me a sense of normality, I was interacting with other children and learning, and I could switch off from what was going on at home.

Eventually we had to escape from my mum’s boyfriend. We went to Women’s Refuge first, then to stay with my auntie and her family in Auckland. We lived in a four-bedroom house with 15 people in it, and everyone spoke Samoan. I went from not really understanding my Samoan identity nor hearing my language to being thrown into this rich but overwhelming space. The transition required a lot of adjustment from me.

We eventually moved to our own place, and I went to a school for children with cerebral palsy. They didn’t really teach us though, because the school was focused on recreation and rehabilitation. None of the schools had a good understanding of my culture.

When things got hard, sometimes I wished I had stayed at the Kimberley Centre. But I know if I’d stayed longer, my life would have been worse. I wouldn’t be the Lusi I am today.

I joined an acting group when I was 15 and that was my first step towards exploring myself and what I wanted to do. I joined a dance group for disabled and non-disabled people when I was 28, and I knew that was my passion – I feel free when I dance. And through dance, I’ve reconnected more strongly with my Samoan culture.

I now live by myself in a State house and have support workers who come in mornings and nights. I do get scared living on my own because sometimes support workers don’t turn up and I get stuck. A lady who lived near my area passed away alone, and sometimes I get scared it might happen to me. I feel like I don’t have control over this situation and this sense of fear and restriction takes me back to the memory of being in the Kimberley Centre.

Being in care was like a slap in my face. I was lost, and there was no freedom of choice. Care still fundamentally operates under a similar system, where I’m left without support for a long period of time. The reality is the system lacks the respect for freedom and even basic human needs.

If I met myself in the Kimberley Centre, I believe that little Lusi would be happy seeing someone like her wanting to play alongside her. That little Lusi at Kimberley wanted to know she was important, loved, and deserved affection. That she was from a rich and vibrant Samoan heritage and she had so many strengths.[276]