Lusi Faiva: ‘Freedom is acceptance of who I am’

Lusi Faiva was diagnosed with cerebral palsy when she was two years old. And because of the lack of support for disabled children and their families, she was moved to the Kimberley Centre, a specialist hospital in Levin for people with intellectual disabilities.

Lusi’s parents had migrated from Sāmoa in 1967 and settled in Wellington. They had Lusi the following year, and by the time her younger brother Rodney was born in 1970, the marriage was over.

Lusi spent five years at Kimberley, and didn’t see her family throughout that time.

She is now a performing artist and founding member of Touch Compass, a disability-led professional performing arts organisation. And last month, she gave evidence at the Disability, Deaf, and Mental Health institutional care hearing of the Royal Commission of Inquiry into Abuse in Care.

This is an edited version of her statement.

 

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

I was two years old when I was diagnosed with cerebral palsy. There was little support for disabled children and their families when I was little. The doctor instructed my mum (Timuia Lauano) for me to go to an institution. He said: “It would be better this way.”

Soon after, I was moved to Kimberley Centre, a specialist hospital for the care of people with intellectual disabilities.

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

I didn’t know how to express myself. There were no tools or strategies offered to me to communicate with people around me, so I could express what I wanted and needed. It was assumed that I didn’t have the “mental capacity” to communicate, and it was assumed that I had an “intellectual disability”.

No one thought to ask me what was going on for me. I was under five at this point but old enough to remember how trapped I felt in myself.

No one ever talked to me about my Sāmoan heritage either. I felt like people didn’t know or care about my Sāmoan culture. Even if they did, there was no recognition, interest or inclusion. There was no respect or effort to recognise me for who I am.

The nurses didn’t look after me properly. The only times that the nurses came on to the ward was to give us children our medicine and then they left.

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 I left the institute even though my mum was told that being there would be better for me.

I think that institutions aren’t set up to care and look after disabled people because it’s built on a system that dehumanises disabled people. And I think that hasn’t changed much.

Care was about medication, changing, showering and other very clinical procedures that don’t take into account the very individual needs such as human connection and affection.

I can remember doing schooling at Kimberley. I think I was just five years old when I started. There were two staff members who were a couple. They visited Kimberley 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 to express myself. Finally, after I was five.

It was strange to see words in the beginning. But as time went on, I could understand what they were teaching me. I was a fast learner. I had a blackboard with chalk that I was able to hold. They taught me how to spell things.

They were kind and gave their time to come and play with us. It was the only time we could do other activities like games and drawing. I learned ways to express myself. I remember them dearly.

While I was in the Kimberley Centre, my mum never visited me. The first time she came was when she came to take me home. I didn’t know who she was and I felt nervous.

The two staff members, who taught me how to express myself, kept in touch with Mum and convinced her to take me home. I felt upset to leave Kimberley because I didn’t want to leave them. I didn’t see them for a long time after I left Kimberley yet they still 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.

I left Kimberley when I was seven years old.

Returning to live with Mum was challenging. She was in an abusive relationship. Living with his family was so confronting and scary. Mum had only been in New Zealand for eight years at this point and she was left alone without moral support. It was a tough time for her.

Maybe if I didn’t go to Kimberley, I would’ve known more about my mother’s earlier life, which would’ve given me more of an idea of who she is. When I went to Kimberley, my mother was still a new migrant from Sāmoa and she had struggles in settling in this country.

When I came home, it felt like we were strangers and it’s been really hard to make up the years that we missed out on being with each other.

I liked going to school because it gave me a sense of normality. I could switch off from what was going on at home. I was interacting with other children and learning. But this came to a halt when we had to escape from Mum’s boyfriend eventually. We went to Women’s Refuge first. Then while Mum was looking for a place to live for us, I was in a hospital.

As I was coming to terms with my CP, the doctors decided to make me walk through surgeries. I had a surgery to straighten out my legs and ankles, followed by rehabilitation. The doctors didn’t explain what they were doing with me. I felt like my body was being manipulated. They were working with my cerebral palsy as if it was disconnected from me and my feelings didn’t exist.

My mum came to pick me up at the end of the rehabilitation and we took a train to Auckland to stay with my aunty and her family. She had a four-bedroom house with 15 people in it and everyone spoke Sāmoan. I went from not really understanding my Sāmoan identity, nor hearing my language, to being thrown into this rich but overwhelming space.

This transition required a lot of adjustment from me. I was receiving the cultural knowledge I had longed for, but my Sāmoan family didn’t know about cerebral palsy and therefore didn’t know how to care for me. We only stayed with them for a short while, and we eventually moved to our own place in another suburb.

While I was living with my aunty, I went to a school for children with cerebral palsy and I stayed in the same school after we moved. They didn’t really teach us though, because the school was focused on recreation and rehabilitation. Also, none of the schools or education I received had a good understanding of my culture.

When things were really hard at home with my family, I sometimes wished that I hadn’t gone home. However, looking back now, I think that if I had stayed in Kimberley for any longer, my life would’ve been worse. I wouldn’t have had the freedom that I later experienced to explore my own life. I wouldn’t be the Lusi I am today.

When I was 15, I joined an acting group. It was my first step towards exploring myself and what I wanted to do. Soon after, I started to rebel by partying with my friends. After a while of doing that, I decided that I wanted to explore how far I could push my personal boundaries, break free and be reckless, by leaving home.

It was risky, and at times an unsafe way to live. But I needed to feel this, explore this, in order to gain some autonomy with who I am and what I wanted to do with my life.

This was life-changing. Meeting similar people, often broken by their own history, and, like me, seeking their own truths. These people became my family during this time. They got me.

Eventually, I had to return home for obvious reasons. I went flatting in a house run by a disability support service. They provided support workers so that I could do the things I needed to do, but I didn’t really like it there. I felt restricted and I wanted my freedom back.

I moved out after a year to a state house, where I’ve lived ever since. I have support workers who come in the mornings and nights now. Sometimes I feel scared living on my own because sometimes support workers don’t turn up and I get stuck. There was a lady who passed away alone who lived near my area, and sometimes I get scared it might happen to me. I feel like I don’t have control over this situation. This sense of fear and restriction brings me back to the memory of being in Kimberley.

The right support for me is having consistent support where I don’t have to feel worried about how I’m going to get out of bed. Or I can come home at night when I want to and still be able to get ready to sleep with support.

I joined a dance group for disabled people, by disabled people, when I was 28. I had no training, but I knew that this was my passion. I feel free when I dance.

To be honest, I still struggle with putting myself on the stage because I feel judged. But I put a facade on to be on the stage and I pour my heart into my performance.

I express my identity through my dance. I need it to be real, and it can be challenging to get my moves right. Through dance, I’ve reconnected more strongly with my Sāmoan culture.

If I met myself in Kimberley, 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 Sāmoan heritage and that she had so many strengths.

As an adult, I fell in love with the performance world. The creative space allows me to explore myself through dance. It brings me beautiful moments, movement, interactions, tears, love, and laughter.

Being in care was like a slap in my face. There was no freedom of choice in entering care. I was lost in care. There was no acceptance, belief or trust from others that I needed freedom. Freedom is acceptance of who I am as an individual.

There was no voice of freedom in the institution.

Living independently now is a source of freedom, but it has moments of good and bad.

Although I’m living independently, the support services aren’t resourced enough to be reliable when I need them urgently. Even today. It frustrates me a lot. Care still fundamentally operates under a similar system, where I’m left without care and support for a long period of time.

This reality is a reflection that the system lacks the respect for freedom — and even basic human needs.

(The above has been lightly edited for clarity. Lusi’s answers to questions from the Commission following her statement of evidence are also included.)