Time to take stock

It's go, go, rest.

I'll be honest, I haven't been as productive as could have been this week. I'm not hugely upset by that, sometimes I would be but this week I'm just not too bothered.

Monday saw me head to Wellington for the first of my Work Stream meetings for the "Safeguarding" within Enabling Good Lives on Tuesday. I realised that I'm really not used to "urban" travel when I only had to pack one change of clothes and toiletries. I'm so used to having pack literally everything I'd need, it feels very odd to have only one small bag and ADNZ Ben's bags.

On Monday I checked into the hotel, assuming that my request for an accessible room had been made correctly. Had a brief "No, he's not a guide dog but covered by the same set of laws" with the person checking us in then proceeded to the room that we had been allocated. Got to the room and thought "Wow, if this is an accessible room I'd hate to be a full time wheelchair user, I wouldn't be able to get right up to the bed", then I turned to look at the bathroom. Standard bathroom, no rails. Now I'm used to making a decision to stay places that I can't shower, like the middle of the bush somewhere but when I'd requested an accessible room this seemed a little weird. So I rang the person who had made the booking to check an accessible room had been requested; I've had that happen before, that someone along the chain has missed the "accessible" request. Turns out an accessible room had been booked and that someone from the hotel would be there shortly to help me swap rooms. Once the room swap was done I settled in, had some dinner and got a reasonably early night.

I see you have breakfast!

I had assumed that people who worked at the Ministry of Health would be a little more onto it about how to interact with Assistance Dogs and their handlers. As usual to assume make an "ass out of "u" & "me""... although people were pretty good about not directly distracting ADNZ Ben, people did forget that there is a person attached to the dog. When starting a conversation with someone using an Assistance Dog talk to the person about something other than the dog, also think about the when & where when you go to have a conversation with someone. I feel like I shouldn't have a say this, but I'm going to because obviously some people need me to. When someone is on crutches, obviously moving with a group leaving a bank of elevators is not the best time to start a conversation with "Wow, that's a well trained dog". I was just trying not to ass over or get my crutches caught up in someone's legs so my response was as not as pleasant as I could have been.

I'm always a little nervous for the "first" meetings of a project and even more so for this as I don't exactly see myself as "knowledgeable " on policy writing. I took the opportunity to get involved in this work stream as I believe that for EGL to be work there are going to need to be appropriate safeguards in place; however we need to allow for safe risk taking and decision making for individuals using the system. I also believe that these sorts of things need direct input from potential users of the system, not just policy makers; so I thought I'd get involved. Needless to say the nerves soon dissipated once we got into the day.

I'm not going to lie "Safeguarding" is a heavy topic and as you all know I have about the same attention span as ADNZ Ben (next to none) so I find these days exhausting. We talked over some case studies on if the person was living a "good life" and if there were safeguards in place to protect the system user and family. We also had discussions on what a "Good life" is and how we view risk and safety and that a lot of the language we use during these processes is often loaded with our own baggage. New Zealanders in the disability community should have the right to live our best lives, not to be "safeguarded" out of experiencing life. The balance of finding that place of "no more or less risk" as anyone else is going to be tricky. The word "safety" in itself means different things to different people, people who have the capacity should have the right to safely face risks, just as everybody else and risk aversion is becoming a risk in society in general as people don't know how to manage "risk".

We do know that people in the disability community are at greater risk of all the terrible things that happen in the world, so we do need measures in place to protect people but I don't want it to go so far that people lose choice and control of the risks they face. We have all been affected by someone who has not put the "service care user" first. I totally get that some people's "capacity" isn't as good as others and that could be a whole blog topic on it's own. I want to see a system that is safe but allows people to have an informed choice on what risks they should or shouldn't take. I've lost count of how many people who have told me that I "shouldn't" be climbing; I'm an no more risk of harming myself than any other climber, in fact I'm probably less of a risk as I know my limitations far better than some of than the ables I've climbed with.



All in all the meeting went well on Tuesday and we've got 3 more over the next few weeks. I wouldn't be surprised if we need more time on this for it to be the best it can be before implementation of Enabling Good Lives. This is only one of the work streams and the work streams need to have good, sound, robust discussions for Enabling Good Lives to be successful. There are so many parts to this transformation that we need each part to be throughly considered and discussed.
Wednesday and Thursday ended up being "time out for me" days. A couple of days where I deliberately did not intentionally think about the EGL work, time for things muddle around in my brain and just sit. I caught up on the IFSC (International Federation of Sport Climbing) World Cup competitions. Totally enjoyed it and with climbers trying new disciplines in the lead up to 2020 it's cool to see the development in the sport. I find at times just completely switching off from what I should be thinking about actually gives me more clarity on whatever topic I have been thinking about.

The Enabling Good Lives System Transformation is a HUGE job. Every time I head into a meeting I realize just how big this job is.  I also realize just how many people that this transformation will effect. Please be patient, I'm only one person. I think at times we (generally) want things to change quickly, but to go quickly through this process will mean we won't have a user-friendly system. We also tend to forget that for these things to happen that it takes a lot of people, yes people. People aren't infallible, we're not perfect and we make mistakes.  Those of us involved in EGL want to make the best system possible with most of the "mistakes" worked through so we can deliver the best system we can make it.

This morning my nephews decided they were coming for lunch with Gran. How could I refuse? It was really good to spend some time with them and as always they bought a smile to my face. I've still managed to get this written out and posted this afternoon!

Have a great weekend everyone and remember life's an AntnzVenture!

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