Abuse in NZ Care - The witness testimony of Lusi Faiva
"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, brief or trust from others that I needed freedom. Freedom is acceptance of who I am as an individual.
I think that the concept of institutions are not set up to care and look after the disabled people because it is built on a system that dehumanise disabled people and I think that hasn't changed much for how the current state care works. Care was about medication, changing showering and other very clinical procedures that doesn't take into account of the very individual needs such as human connection and affection." - Lusi Faiva
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The Royal Commission of Inquiry into Abuse in Care is currently holding the Disability, Deaf and Mental Health institutional care hearing - this hearing has focused on the lived experiences of survivors who are disabled, deaf or were placed in psychiatric institutions.
The hearing has been open to the public from Monday 11th through to the 20th July 2022. The scope of the hearing can be read here
**Warning** This livestream includes graphic descriptions of abuse. Well-being support is available via phone, text or email. Link to Witness summaries.
The Inquiry is also conducting a Pacific investigation examining issues that are particularly relevant to the experiences of abuse of Pacific people across State and faith-based care settings.
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Lusi Faiva is of Sāmoan descent and was diagnosed with cerebral palsy at two years old. On the recommendation of a doctor, she was admitted to Kimberley Centre, and lived there until she was seven. At Kimberley, Lusi experienced emotional, medical, and cultural neglect.
She shares below about how institutions dehumanised disabled people, and that care being provided by disability support services today still fundamentally operate under a similar system with a lack of respect for freedom of choice.
This statement has been edited and condensed for length.
"I will open my statement with key words that are recurring themes of my statement:
* FREEDOM
* EXPRESSION
* CHOICE
* ROUTINE
* FEAR OF BEING FORGOTTEN/LEFT
* WORRY
* RESTRICTED
* RESPECT
* AFFECTION
I am a proud Samoan woman. I am an artist, dancer and pasisonate freedom seeker. I was 2 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 for me to go to an institution and said 'it'd be better this way'. Soon after I was moved to Kimberley Centre (a specialist hospital for the care o people with intellectual disabilities)
I only remember a small amount from my years at Kimberley. I shared a room with other children there but there were no activities going on and we hardly interacted with each other. There were people of all ages with different disabilities and the institution felt 'dark & cold'
I didn't know how to express myself and it was assumed that I didn't have the mental capacity to communicate. It was assumed that I had an intellectual disability. At this point I was 5yrs old but old enough to remember how trapped I felt in myself. No-one ever talked to me about my Samoan heritage either and it 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.
The nurses didn't look after me properly. The only times nurses came on to the ward was to give children our medicine and then they left. Once I fell and broke my ankle because no-one was watching me and I never received specialist support there even though my Mum was told that being there would be better for me. If i'd received better care at that time, than my physical health would be better today.
I remember doing schooling at Kimberley and I was about 5yrs old when I started. There were 2 staff memebers who were a couple and visited every day. They were the only one who taught us kids. They recognised that I was switched on and started teaching me how to read and write & to express myself. As time went on I could understand what they were teaching me and I was a fast learner. I had a blackboard with chalk that I was able to hold. They taught me how to spell things and were kind & played with us. It was the only time we did 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 remember who she was and felt nervous. The 2 staff members who had taught me how to express myself kept in touch with Mum & convinced her to take me home. I felt upset to leave Kimberley because I didn't want to leave them and didn't see them for a long time - they still remain significant people in my life and their regular interactions taught me that I was someone and I deserved to be loved. I left the Kimberley Centre when I was 7 years old.
Returning to live with Mum was challenging. She was in an abusive relationship and it was a tough time for her. 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. This came to a halt when we had to escape from Mum's boyfriend and we went to Women's refuge.
At this time as I was coming to terms with my cerebral palsy the doctors decided to make me walk through surgeries. I had surgery to straighten out my legs and ankles followed by rehabilitiation. The Drs didn't explain what they were doing with me and I felt like my body was being manipulated. They worked 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 moved to Auckland to stay with my Aunty and her family. She had a 4 bdrm house with 15 people in it and everyone spoke Samoan. I went from not really understanding my Samoan identity or hearing the language to beeing thrown into this rich but overwhelming space. It was a big adjustment - I received the cultural knowledge but my Samoan family didn't know about cerebral palsy & didn't know how to care for me.
When things were really hard at home with my family I sometimes wished that I hadn't gone home but looking back I think that if I'd stayed at Kimberley for any longer my life would've been worse. I wouldn't have had the freedom that I later experienced and wouldn't be the Lusi I am today.
When I was 15 I joined an acting group and soon after started to rebel by partying with my friends. I decided that I wanted to explore how far I could push boundaries, break free and be reckless leaving home. It was risky & at times unsafe but I neeeded to experience this in order to gain some autonomy on who I am and what I wanted to do with my life. It was life changing and meeting similar people often broken by their own history and like me seeking their own truths. These people became my family - they got me.
I went flatting in a house run by a disability support service but I didn't really like it there - I felt restricted and wanted my freedom back. I moved out to a state house where I've lived ever since and have support workers who come in mornings and nights now. Sometimes I feel scared living on my own because sometimes support workers don't turn up. There was a lady who passed away alone who lived near and sometimes I get scared it might happen to me.
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. 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 b ereal and it can be challenging to get my moves right. Through dance I have reconnected more strongly with my Samoan culture.
If I met myself in Kimeberly, I believe that little Lusi would be happy seeing someone like her wanting to play alongside her. That little Luis at Kimberley wanted to know she was important, loved and deserved of affection. That she was from a rich and vibrant Samoan heritae and 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.
Living independently now is a source of freedom but it has moments of good and bad. Although I am living independently the support services are not resourced enough to be reliable when I need them urgently even today. It frustrates me a lot. Care stil fundamentally operates under a similar system where I am left without care and support for a long period of time. This reality is a reflection that the system lacks the respect for freedom & even basic human needs.
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Lusi is a co-founder of Touch Compass, Hau Tipua Toi and uses dance to connect with her culture and change perceptions about disability. Her work with Touch Compass and as a disabled performer has created significant opportunities for Disabled people to have a platform to share their art.
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If you’re feeling upset by a similar situation and need to talk to someone, you can contact the following helplines for free:
Click here for a list of support services for survivors of sexual assault which includes Auckland services followed by services in the rest of Aotearoa, New Zealand in geographical order.
- Lifeline: 0800 543 354
- Need to talk? Call or text 1737
- Samaritans: 0800 726 666
- Depression helpline: 0800 111 757
- Youthline: 0800 376 633 or text 234
The Family Violence Information Line (0800 456 450) - provides self-help information and connects people to services where appropriate. It is available seven days a week, from 9am to 11pm, with an after-hours message redirecting callers in the case of an emergency.
Women’s Refuge 0800 733 843
Shine: 0508 744 633 – domestic abuse helpline with professional support