Gathering perspectives #WCMTLD

I’m not sure whether it was coffee consumption, nerves/excitement about today, jetlag or something altogether different but I didn’t get a lot of sleep last night. I woke feeling a little jaded and stumbled across the road to the cafe for breakfast. Turns out avocado on toast is like the food of superheroes, I felt a million times better after some and a coffee.

Today was a memorable day to be in Australia as the results of their same sex marriage survey came back with a resounding YES. I watched live online and felt immense warmth towards the statistician doing the press conference to share the results, and educating the public about statistics at the same time.

My call with Jim at the Council for Intellectual Disability followed the historic result. Everyone I have spoken to has raved about Jim’s advocacy around health improvement for people with intellectual disability. Literally everyone, he is clearly a much respected individual and even after a half hour phonecall I can tell why. Jim told me a little about the history of health advocacy work at CID and talked me through some of the highs and lows of CID’s campaigning in this area. CID have a position statement on the health of people with intellectual disability which is widely endorsed by a huge number of supporters. There are only really two big asks:

  1. General health system to lift its game to consider and respond to the health of people with an intellectual disability
  2. Development of a specialist service to back up the mainstream supports around any specific and complex needs.

Jim pointed out something often discussed at home too, children have access to paediatricians for support with their health matters, older people have access to geriatricians for support with their health matters. We already have these specialist services for certain population groups, why not people with an intellectual disability?

After my call with Jim I had the pleasure of skyping with a bereaved family member. I’m conscious of their privacy and do not want to say too much here, other than it was a real pleasure to speak with them. Their experience was not a particularly bad one, although obviously traumatic in its own right. It was helpful to have more information on what helped though and it seems the person visiting from the coroner’s office and taking the time to listen to a family, know something about their loved one, and consider whether they had any concerns was key. The key phrase in our conversation for me was:

The chap that came out just spent a lot of time listening- talking about your severely disabled relative isn’t something you get to do a lot of in life…. We did feel like their death was taken seriously.

It really isn’t that difficult is it, to afford a family respect, to be interested and give them some time and the difference that can make literally has an impact for years to come.

Finally, mid afternoon I headed up to University of New South Wales where I’d been invited to give a talk reflecting on the #JusticeforLB campaign and how I came to be in Australia on a WCMT Fellowship. My slides are here if anyone is interested:

Investigating the deaths of intellectually disabled people: reflections from the #JusticeforLB campaign from George Julian

It was so lovely to be in a room with people who seemed genuinely interested to know more. Thanks also to Aine for pics and tweets.

Chatting with people over wine and nibbles after it was clear that people had come from a wide range of places to, there were parents, researchers and academics, students, someone from the Office of the Public Guardian, healthcare practitioners, campaigners and advocates. Everyone was rightly horrified to hear about what happened to LB, but I hope I got across the joy and wonder of the campaign too, and the ways in which we’ve attempted to get some focus on this issue.

After the talk I was taken to dinner with lovely Prof Leanne Dowse, Aminath and Ariella. A really great day, thank you to everyone who was part of it. My only regret, the same as the day before, that I didn’t get a photo with Rebecca Scott Bray and Hugh Dillon (two opportunities, two days running and failed on both occasions), I’ll just have to come back and see them another time 😉

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