I wanted to record some random thoughts generated through the exceptional Disability Matters Conference. You can visit the conference website here and see what was covered. I can honestly say its been a long time since I’ve been at such an eclectic and authentic conference. The three days brought together disabled people and self advocates, families and whānau, disabled people’s organisations, academics, students and researchers from numerous disciplines, from education, health and law, policy makers and staff from government departments, advocacy organisations and service providers. I loved it. It was such a honour to be part of it, and to see the UN Convention on the Rights of Persons with Disabilities brought to life in many ways.
I thought about attempting to write a coherent blog post and decided it wasn’t probably going to be most useful for my purposes and it might end up rambling and incoherent for anyone reading – that or suitably twee in an attempt to construct a coherent narrative, so I’m just going to list a few thoughts and scribbles and notes I made when people were talking. If you’re super interested check out the twitter stream here. I may do another post later with further thoughts.
Welcome and acknowledgement
The conference kicked off with a Māori welcome – it acknowledged where we come from and referenced ancestors and spirits and those who have worked alongside people in the room and paved the way for our work at the conference. There was such a strong sense of acknowledgement at the conference. There was so much humility and reference to other’s contributions, no power posturing about one’s own greatness or truth or answers. It was something that I noticed time and again. Another strong element was the use of song, I’ve never attended a conference presentation that ended in song, or a waiata, several did and I really liked it. It’s so powerful and for me very much focused me in the moment. I am kicking myself for not having more time in New Zealand and not managing to explore the differences in cultural approaches. I guess I’ll just have to return.
Health outcomes and accessing healthcare
Robert Martin and Paul Gibson had a conversation in their keynote The spirit of the revolution which covered all manner of context, history and current progress towards realising the rights in the convention for people. Robert, describing his role on the UN Committee on the Rights of Persons with Disabilities, said:
Health, Article 25. I think is really important. I always ask the hard question ‘We know people from all over the world with a learning disability die a lot sooner than other citizens of the country where they live’. So I ask what they’re doing about that.
I attended a number of sessions that looked at the challenges facing disabled people in accessing healthcare. Some of these focused on cervical and breast cancer screening programmes (Deborah Payne and Jenny Conder). Others looked at the role of family in health and wellbeing (Huhana Hickey). Another presentation focused on the need for adjustments to help d/Deaf people access healthcare and the devastating consequences of communication failure (Joanne Witko and Rachel Noble). All of these presentations had a similar message, if you get it right for disabled people, you’ll improve the experience for all (a view backed up by the We Learning Disability Nurses chat that happened on Wednesday morning here/Tuesday evening in the UK). The need for easy read or accessible information was a key message throughout all of these presentations. Something that would seem so simple yet also seems to be elusive.
There was a focus of fear throughout a number of presentations. Roger Slee in his keynote talked of the fear of other, of strangeness and quoted Zygmunt Bauman’s (2004) Wasted Lives: Modernity and its outcasts. Bauman argues that every society creates its own set of strangers in its own particular way. There is an undercurrent of fear through a number of other presentations too, Sarah Gordon in her keynote gave three examples of her human rights being breached in healthcare, where time and again she was encouraged to complain but chose not to, fear of retaliation being an ever present possibility. The fear of losing limited services was also raised.
Families at the conference also talked about fear, fear that they would not be able to access appropriate support for their loved ones, especially those who had unique forms of communication or high and complex needs. Some families spoke of their fear and mistrust of services, and Sue Gates presented on siege mentality, what it is and where it comes from.
Jan Moss and Hilary Stace in their presentations touched on the power of services and the requirement on families to constantly be vigilant, to manage care and fear, not only of what may go wrong, but of retaliation and isolation if families advocate too well. Several family members voiced their ever present fear of ‘what will happen when I’m gone’ for many family members, although I don’t think I heard this so much from Māori people.
I can’t help feeling that the convention will only be real to people, and their human rights will only truly be realised when disabled people and their whānau live free from fear.
Naturally part of our environment and community
Gary Williams, one of the first keynotes spoke about The best of all worlds – Māori, Whānau and the Convention. Gary talked about long overdue apologies from the State for people who have been abused and neglected and who are still stuck in institutions, and compensation for lost lives. Gary also outlined how the Eurocentric, impairment focused view of the world is so alien to Māori people. He asked us to be real about partnership and to take on board the collective reality and wisdom of disabled Māori ‘as read’. Gary rightfully highlighted that system transformation is only one component of how people can live good lives.
From talking with people throughout the conference it became clear that in Māori culture, being in the world is always being with others. That is even if you’re not literally with others, you are still always deeply connected with others and you are never alone. Māori consider themselves as part of a multi-generational family or whānau and intrinsically attached to the environment and community and the land of their ancestors. Therefore to achieve health and well-being there is no point in addressing or focusing on an individual, the focus needs to be someone and their whānau.
Huhana Hickey in her presentation Article 25: Exploring the health and wellbeing of Indigenous peoples with disabilities expanded on this in more detail. Huhana explained that whānau hauā means that we are all naturally part of our environment and community, all of us. She shared that Māori have never seen disability as different:
‘Symbolically, whānau hauā signifies the wind that propels whānau with member(s) who have a disability. The term whānau means to be born or to give birth and refers to the extended family network who may live within or outside of a home’.
Huhana explained that for Māori people they don’t function without their family. Huhana’s introduction slide above, shows her connections and she spoke of how Māori are always connected, indeed she had met whānau at conference who she’d not met before. The statistics Huhana quoted about indigenous peoples with disabilities were shocking. One in three Māori experience disabilities, whereas it’s one in four in mainstream populations. 49% of Māori up to the age of 25 have disabilities, and half of these have intellectual disabilities. That’s 1 in 4 Māori up to the age of 25 with a learning disability. Yet only 16% of Māori access any supports or services.
A lot of this comes back to colonisation:
‘Western colonisation was violent, it destroyed traditional systems and through missionaries it challenged indigenous thinking and practices, this had led to a lot of uninformed indigenous peoples who are not thriving under Western thinking around disability… institutionalism led to the marginalising and exclusion of Māori with disabilities which also led to the breaking down of family (whānau) and collective structures which worked well for indigenous peoples and broke down the way they supported and cared for each other’.
My brain is buzzing after the conference but I’m left wondering whether the breakdown that Gary and Huhana described, whilst felt most keenly by Māori and their whānau, is something that has much wider ramifications. The demonisation and isolation of families and carers, the distance and ‘professionalism’, arrogance and ignorance of a service dominant culture that has stripped out love and care in the true sense, and in a focus on individualism has perhaps destroyed the possibility of a holistic sense of health and wellbeing. I know I’ll be thinking about this for weeks to come.
I’ll leave you with Gary’s whānau from Hei Whakapiki Mauri singing the Tutira Mai Nga Iwi: