Royal Commission: Disability voices reflect on the Abuse in Care Inquiry final report

A long time coming: The final report arrives with mixed emotions

"I’m feeling a mixture of nervousness, sadness and anticipation. I am pleased that we are being heard at the highest level, that as a country we will be confronted with some appallingly grim realities to acknowledge and come to terms with our past. I feel sad that the Report has come too late for many survivors who didn’t survive long enough to see the Report’s release. I am nervous because I fear we are going to have to find the resilience from somewhere to hold our ground and demand appropriate redress. So often when it comes to addressing the disabling barriers in society, disabled people keep being told to hurry up and wait. It will be up to us to find unity, determination, and say “hell no, not now, not this time." - Jonathan Mosen, Survivor 

"Very excited! Have seen within the Deaf community the positivity that has come about after a person spoke to the tribunal – a sense of hurrah, someone has talked about the collective experiences all Deaf people share. For example, the impact of the ban on sign language in education has impacted every one of us today. I’ve seen people gaining strength now that their truth as people has been told is fantastic. This is particularly so for Tāngata Turi as they were denied access to Te Reo and Te Ao Māori as well as sign language and deaf culture." - Rachel Noble, Royal Commission reference group member

"I’m very pleased that the results are finally being released, it’s been a long road to get here. So many people have had to relive the trauma they experienced in State Care and I reflect on the fact that many have not survived to see this day happen. I am, however, sceptical about any meaningful response from the Crown to address these issues." - Dr Tristram Ingham (Ngāti Kahungungu, Ngāti Porou), ONZM, Royal Commission kaupapa Māori panel member

"This is a time for reflection. More than 2300 survivors shared their stories and relived intensely traumatic experiences of abuse and neglect suffered while in state care. It’s estimated that 200,000 were abused and even more were neglected. The true number will never be fully known. These survivors have spoken up for themselves and their whānau and for those who couldn’t, including those who didn’t survive. I feel grateful for their bravery and committed to working for the necessary changes to prevent ongoing abuses." - Prudence Walker, Disability Rights Commissioner, Te Kāhui Tika Tangata Human Rights Commission 

"It's been a long time coming for the report to be launched. I feel excited for the wider public to finally be able to hear stories of people who have been ignored and overlooked for far too long. But this excitement is with a very heavy heart because all of the stories are going to be heartbreaking. The Inquiry is called the Royal Commission of Inquiry into Abuse in "Care". The word 'abuse' and 'care' feels like opposite things, yet, we know that abuse happens in care settings still to this day. While the Inquiry had a cut-off date of 1999, it is important for me to not leave this in the past context, but to understand what it means for the present day and for the future." - Umi Asaka, Junior Research Fellow at The Donald Beasley Institute

A call to action: The importance of honouring survivors' stories

"If we don’t [engage], it will be too easy for the issue to have a brief period of high exposure and then be forgotten. People will inevitably move on to other issues. The media will only cover the issues raised by the Report for a short time. But those of us who experienced the abuse can’t turn off our history. The systemic deficits in New Zealand society will remain. It is up to us to demand change." - Jonathan Mosen, Survivor 

"It is our report, it includes our collective stories. We need to be grateful to those who shared their experiences and to make the most of the opportunity to continue educating society about our history and our realities particularly when we continue to experience inaccessible and non-inclusive environments. We need to own it, and use it as a call to action to ensure the future does not allow these horrific experiences to occur again. We have a responsibility to create a better world for ourselves and future generations of disabled people. We need to work with our allies who are also engaging with this report and committing to change with us." - Rachel Noble, Royal Commission reference group member

"The evidence and stories belong to our disabled communities. This report forms part of disabled people and their whānau’s previously untold history and those who contributed did so at great cost to themselves having to relive their experiences. We are extremely grateful for their contribution and their bravery and they can be proud of being a vital part of the results." - Dr Tristram Ingham (Ngāti Kahungungu, Ngāti Porou), ONZM, Royal Commission kaupapa Māori panel member

"I’d like to flip that and talk about why it’s important the Government engages with disabled people following the release of the report, and beyond. For many years survivors were told the abuse and neglect they experienced wasn’t systemic, or they were ignored and dismissed completely. Disabled survivors gave evidence about experiencing physical, sexual, psychological and emotional abuse, and educational and cultural neglect. Many lost connection to family, whakapapa and important cultural practices. Our agencies must engage with people with lived experience to ensure we don’t repeat the past. We’re seeing some of the same conditions in residential disability support services today, as highlighted by a Health and Disability report released last week, that led to abuse and neglect people in state- and faith-based care. Survivors’ stories have shone a spotlight not just on the past but on our present as well." - Prudence Walker, Disability Rights Commissioner, Te Kāhui Tika Tangata Human Rights Commission

"At the Donald Beasley Institute, where I work, I had the privilege of working on 'Tell Me About You' project which was about listening to people with learning disability and neurodiversity who lived in institutions and other state care settings who often did not or were not able to give testimonies through the ROCI's official processes. I was devasted to learn about the treatment the storytellers experienced. What was equally hard to swallow was the reality that while deinstitutionalisation has taken place, community-based settings and practices have not shifted as much as they should have. Many people who came out of large institutions moved into smaller residential houses. However, for many people, moving to the community has not always resulted in adequate support.

There is still a long way to go until we can honestly say “never again” in relation to abuse in care. The report covers more than disabled people's experiences - it provides painstaking details of the history of Aotearoa New Zealand, including our disability history. It also includes important recommendations; implementation of these has to start with imagining how we want our society to be from now on. I believe that it takes all of us, disabled people and non-disabled people to imagine a world where it becomes normal for disabled people to live in our own place of choice.

It also requires taking a step towards acting on this imagination by supporting each other and building relationships to think about what makes it possible for people regardless of their disability to live in the community. There are systems and structures in the form of funding and policy to support disabled people, but these structures are often hard to navigate and the disability community is constantly facing a shortage of support workers. One of the ways these systems can be given full effect is when communities are connected." - Umi Asaka, Junior Research Fellow at The Donald Beasley Institute

Hopes for the future: Why we must hold the Crown to account

"Clearly, there must be safeguards in place to ensure the unconscionable abuse that many of us have experienced never happens again. But abuse comes in many forms. Neglect is also a form of abuse. Under-resourcing is also a form of abuse. Disabled people are, in general, still far too invisible in this country. We have no members who identify as representatives of the disability community in our Parliament right now. That is hardly a house of representatives. Few of us are in key change maker roles. So it’s easy for us to be forgotten and neglected. I am hoping very much that the Report will come down in favour of strong disability rights-based legislation, and not the half-baked accessibility-only legislation that has been promoted by nondisabled people in provider agencies. I am hoping that the Report will usher in a renaissance of true grassroots advocacy, that from the abuse we have endured we forge a strong determination to demand better, to no longer be in the shadows, to assert our worth and demand our rightful place in a nondisabling society." - Jonathan Mosen, Survivor

"My personal hope is that we as a community can take ownership of the recommendations. That we can provide leadership particularly in addressing the systemic issues that get in the way of us being able to be our true authentic selves as citizens of Aotearoa. It can be done." - Rachel Noble, Royal Commission reference group member

"The Crown needs to honour our disability communities by implementing the recommendations in the report without exception. The more light we can shine on these issues the more informed and empowered we as a community will be to undertake a stewardship role to protect future generations from this type of abuse. We need to be committed to exposing any current occurrences of abuse and have mechanisms that support disabled people to have their voices heard and believed. My hope is that as disabled people and whānau we can hold the Crown to account to ensure similar experiences never happen again." - Dr Tristram Ingham (Ngāti Kahungungu, Ngāti Porou), ONZM, Royal Commission kaupapa Māori panel member

"Disabled survivors were denied personhood and their culture, as well as the opportunity to practice life and community skills. We lost generations of future leaders. What matters most now is that any redress takes the survivors’ lead on what will help achieve reparation and healing to the greatest degree possible. It must be both economic and non-economic, and it must be substantial. The pathway for redress must be impartial, and it must be required and resourced to act quickly.  

Most importantly, these events can’t only be seen as something some bad people did in isolation many years ago. While we may have closed large institutions, we still have many smaller institutions where disabled people are separated from others, have little choice or control in their lives, even over what they eat and who they live with.  

I would love to see all whānau invested in so they can care for their loved ones, with support from the community and funding by the State. And that all entities uphold te Tiriti o Waitangi and the rights of Māori in care as Indigenous peoples of Aotearoa New Zealand. I want to live in a country where all children, young people and adults receive the disability or mental health supports that are their right. Also that local schools are welcoming and inclusive of all students and all students have their diverse needs met." - Prudence Walker, Disability Rights Commissioner, Te Kāhui Tika Tangata Human Rights Commission

"Care still fundamentally operates under a similar system, where I am left without care and support for a long period of time. This is a reflection that the system lacks the respect for freedom and even basic human needs." This is a quote from Lusi who has given her testimonies at the Royal Commission Inquiry into Abuse in Care and I think her comment says it all. When I was reading some of the testimonies from ROCI which will be part of the report, I felt the disconnection between people who experienced "care" and the rest of "the mainstream society". I hope that the report will be the bridge between the experiences of people who faced complete marginalisation and segregation from society and 'the mainstream society', and people who need 'care' and people who do not yet need care at this stage (because, at some point in our lives, we all need care).

Being able to learn about people's experiences in these care settings in this official capacity is a great step forward, but we have a long way to go to ensure that the system of care is transformed so that everyone will have the care we need to enjoy our freedom and human rights. We can all play our part to realising this by paying attention to this report and building relationship with each other." - Umi Asaka, Junior Research Fellow at The Donald Beasley Institute