How did I end up here??

Last week was jam packed full! One of the busiest weeks I have had in awhile.

On Monday the 12th March we ended up needing to take ADNZ Ben to the vet, he’d been limping a little at the end of the week before and through the weekend. Turns out it was a suspected sprain or sublaxation of one of his toes. At that point he was prescribed anti-inflammatory meds and “crate rest” for a week, with a reassessment on Monday the 19th of March. This was a concern for me as I was flying to Wellington on Wednesday morning, returning on Thursday and I haven’t traveled without ADNZ Ben in the 5 years that I have had him. ADNZ Ben being off duty and my hand still recovering from “minor surgery” the week before meant I would be rolling for this trip rather than using my crutches.

Early morning flight to Wellington

Later that day I had a joint interview with Michael Pulman with Roger Marsden from Plains FM 96.9 in Canterbury, a community radio station. Roger hosts a show called “Listen! Our Voices Count”, which is broadcast once a month and has a focus on disability related issues. The topic for this interview was “Is inclusion a reality in New Zealand?”. I felt the interview went well and most people know my opinion on this subject, in many contexts inclusion is a “buzz word” and is not often put into practical implementation.

Tuesday the 13th I had a check-in with a nurse to see how my hand was healing and to decide if it was ready to take the stitches out or leave them in for another few days.  I was somewhat relieved to get them out at this appointment, they had been as itchy as anything and although I still couldn’t put 100% pressure on my hand, the nurse didn’t think I was likely to split it open.

That afternoon we had our “post Regional Leadership Group” Disabled People’s Core Groups meeting to discuss how the Regional meeting had gone. Some of us had been talking about how recording and/or live-streaming these meetings to the Facebook Group could be a good idea for community engagement. In a last minute decision I set up my phone to live-stream and desperately hoped that the technology gremlins would leave us alone.  I know we fell in and out of signal a few times but overall it went well and we will be trying to do more of it because its a good way for the community to know what is going on with the System Transformation. It also provides access to those who can’t make the meetings.

Wednesday the 14th was an early start for me, I needed to be at the airport for check-in at 6.30am for a flight to Wellington. The previous week I had been appointed to the National Enabling Good Lives group, the meeting was at 12 but the flights a little later wouldn’t have given me time to get to the meeting/lunch on time. Seeing as I was going to be in Wellington early I met with Sue, the team head of the Safeguarding and Networking groups for the System Transformation. We had a bit of a yak about the “on the ground” organisations that we can use through networks and utilize for safeguarding that currently exist in the region. We identified several pre-existing organisations that we could tap into to potentially support the system transformation and we also identified several that would probably need up-skilling in order to make the “Mainstream first” EGL principle a reality.

Fog hanging over the Hutt valley

Then it was off to my first National Enabling Good Lives meeting. It all happened with a bit of a hiss and roar, I’d been appointed only a week before and felt like I needed to read a novel before the meeting. In some ways I was feeling a little “how did I end up here?”; it was less than year ago that I turned up to a hui on a “system transformation” on how Disability Support Services were going to be assessed and delivered. I turned up expecting another bullshit government consultation that was only going to result in more red tape for those living with disabilities. Now here I am in the middle of trying to see a system that works better for those that have additional needs and I am still hoping we can see a system that is easier to use, without people falling through the gaps between to the two current systems (DSS & ACC). It is going to take a long time to see this fulfilled and its also going to take a lot of work. I have stayed out of the “political” side of living with impairment as I have found it difficult to find support both on a practical level and when I needed help from an advocate I couldn’t find the help I needed on that either; because I was disillusioned and despondent  I went it alone and did what I needed to do in order to achieve what I wanted. So being this involved at this level of disabilty/impairment based issues is taking a bit of a mind shift to get used to it.

Going out for dinner and having a less formal setting to chat and get to know some of the other groups members was good, topped off by some great food. After dinner I sat down with Jade Farrar and went live for a few minutes just talking about content and our views on issues and a little on my first NEGL meeting. Yes I did say that the disability community can be too precious about the language we use at times. I totally agree and understand when we are writing policy and documents we need to be careful about the language we use to avoid “unintended consequences” but when trying to talk to the wider community about disability/impairment related issues I believe being so argumentative about language used can put up barriers to having real and meaningful conversations because people are trying so hard not to offend anyone.

Screen Capture from Facebook Live

Thursday was another full day of NEGL including meeting with Carmel Sepuloni, the Minister for Disability Issues. I found her to be interested, engaged and empathetic to the topics we bought to the table. We also had an update from Sacha O’Dea on the system transformation progress and updates from the regions that are currently involved in the trials and I presented a short update on how Mid-Central is feeling with the upcoming prototype, which is a mixture of excitement and cynicism. I got back into Palmerston North just after 7pm.

Above the clouds on the way home

Heading down to Palmerston North

On Friday I had the opportunity to attend the Leading Life Conversations workshop provided by CCS Disability Action. The focus of this workshop was about having conversations about people’s lives, both our own lives and how to have conversations with others about their lives and why having these conversations is so important. CCS Disability Action has a really good tool called “How’s it going?” which is both online and an app which makes having these conversations a lot easier, it’s also a really good tool for taking a “snapshot” of where a person is at a particular point of time. I though that it could be a really good tracking tool for people to see if changes made in their lives are having a meaningful impact.

So that was my week last week, this week I haven’t done a huge amount as I needed some time to rest, recover and regain my bearings.

Back home as the sun was setting on Thursday

As always, take care and remember to Thrive not Survive!
Antnz