So it’s Monday evening and I’ve not blogged since Friday so I’m going to do a quick post on my weekend as an aid memoire of the end of my time in Wellington. It was a busy week last week, split between Melbourne and Wellington, and I knew I only had one day in Wellington left as I was travelling down to Dunedin for the Disability Matters conference on Sunday.
Friday night I had the most amazing experience. I booked it on Thursday to force myself to do it because I knew I’d be tired after the week I’d had but also knew I’d go because I wouldn’t waste the money/opportunity. Friday evening I went on a night tour of Zealandia, a wild life and bird sanctuary, a 10min drive or in my case a 45min walk from Wellington city centre. It is quite surreal, and totally brilliant, that so closed to New Zealand’s capital city is such a complete haven. You’re surrounded by the sounds of the forest and as our tour started at about 8pm you caught the day birds coming into roost for the night and then the night birds, glow worms, frogs, tuatara (very cute native lizards) and glow worms took over. The ultimate finale occurred in the last 10mins of our 2.5hr tour when we saw a female Little Spotted Kiwi. Definitely an experience of a lifetime.
The kiwi experience was a real reminder for me about assumptions and expectations. When my Dad died he left his medals and kit to my sister (she’d been in the Army Cadets and understood the significance), his tools and DIY equipment went to my brother, and his only other significant possession, a little stuffed kiwi toy that he’d bought back from a naval tour of Australia and New Zealand in 1971 was left to me. This kiwi is about the size of my palm. It’s the only representation of a kiwi I’ve ever known. Why am I telling you this? Because I could not believe the size of the kiwi that ran in front of us at Zealandia. It’s the smallest breed of kiwi but it was about the size of an inflated balloon. It was exactly what I expected but nothing what I expected – my brain had always understood kiwis to be palm size, even though I’d read information before the visit and knew that they wouldn’t be that in real life. It was just a visceral reminder that it’s hard to shake what we grow up knowing, or rather not knowing but assuming. A very prescient reminder.
Friday night was a late one by the time I got the bus back into town but Saturday morning was the perfect antidote. I met up with Sharon Brandford, a former clinical director now a disability consultant. Sharon is also a registered clinical psychologist and has an interest in healthy ageing, death and dying amongst people with a learning disability. We were meeting for coffee but spent all morning chatting, and then she bought me lunch. We discussed loads over the morning including attitudes to death and dying ‘zip your lip, don’t look, don’t ask, don’t talk about death’ and how these play out in different situations. What learning disabled people understand about death and dying (usually more than anyone gives them credit for), fear, stigma and shame. We discussed a piece of work that Sharon conducted when she was at IHC, a snapshot of what the organisation knew about how people in their services aged and died.
We discussed how we can change and challenge societal apathy to discussing death. The focus of any feedback as complaints, and how that sets parties up in an us and them scenario right from the start. Sharon shared a families experience, who explicitly did not want blame to be placed on their relative’s primary carer, yet that was exactly what ended up happening. We discussed how fear drives the truth underground. Something I’m sure many people can relate to.
Sharon filled me in a little that she knew about Maori culture, the role of family and some of their practices and rituals around death and dying. We discussed how these brilliantly open, and encompassing, practices could be in conflict with official systems that require a body to be removed for autopsy, for example. We also covered the diversity of, and within, families and how some families Sharon knew felt shunned or excluded from their natural support networks when their disabled child died, because it was almost as though they were too frightening a concept or a vision of the future, for other parents to handle. It was a brilliant morning and left my head buzzing with ideas and thoughts for things we could do or discuss further.
Sunday morning I was up early for a flight to Wellington. I read a book published by NSW Council for Intellectual Disability on the flight over, the biography of Kim Walker, Forgotten and Found. You can read it here. I’d strongly recommend it. It tells Kim’s life story, from growing up in an institution, to moving into a group home before finally moving into a flat of her own. It talks of her advocacy work, her struggle to contain herself at times (I can relate) especially when it was to do with closing institutions. It also talks about her evolving relationship with her family. It’s a great read.