I know I said I’d be more posting more regularly…. then I went AWOL. Now it’s a new decade!

Disclaimer: All thoughts and opinions shared in this blog are my opinion and written from a personal experience. My opinions do not represent any organisation that I collaborate or work with.

Well I know that I said I would be posting more regularly in my last blog, then I promptly seemed to fall off the planet. Honestly though whanau; I had a mental breakdown at the end of August. It’s taken me until now to get my head together again enough to write. It’s been a case of surviving so I can once again thrive.

Now me being a climber at heart, one of the best ways to describe this is as; “I took an emotional whipper of a Fall Factor of 1.5, past the belay point (I’m glad life is a multi-pitch climb!)”. For the past couple of months I’ve been getting a new rope and replacing my protection so I can have another attempt. For the non-climber reading this and asking “what the hell does that mean Antnz?”. I took a huge fall emotionally, lower than I have been for a long time and I’ve been getting the supports I need in order to regain my strength, voice and confidence in order to get on with life and achieve my goals.

As many of you know over the last couple of years I have somehow found myself involved in disability social policy and community development. A lot of people outside see New Zealand as some wonderful paradise and all our citizens are treated equitably. I hate to break it to you, although New Zealand is an amazing and beautiful place, we still have some major equity issues in the systems that are supposed to support disabled people. Do not get me wrong here; I know we in New Zealand have a lot to be thankful for and I am grateful for what we have, but I know that we as a nation can do far better in supporting people with impairments to live full, productive, meaningful and honorable lives. On a personal level my partner and I have been “going it alone” and just “getting on with things the best we can” since 1999. This has been due to the inequity between systems and some very large cracks between these systems; this means some of us cannot access required appropriate supports efficiently (if at all).

In May 2017 I got involved in Enabling Good Lives (EGL), a principles based approach to Disability Supports. Honestly I have had so many “How did I end up here?” moments since. I turned up to what I thought was going to be another bullshit governmental consultation where some boxes were going to be “ticked off” as community consultation and nothing would really change. What I found at that meeting were several disabled people and whanau (family) of disabled people, who were saying “we’ve actually been asked to the table to give our input”. Now me being a Burgess, means we ask questions, so I did. “Does this mean we could see something like the Canadian or American Disability Acts?” I’m not sure those that were facilitating were expecting such a question. I got a very non-committal answer which was followed up with “this is just the start of what will be a long process”. I was then encouraged to put my hand up for the Regional Leadership Group. I had a lot of cross-transferable skills from other roles that I have had in the past, even if I would have to play “catch up” on some of the disability specific regulations, policies, UNCRPD etc. Long story short, I became part of the Regional Leadership Group, then appointed to National Leadership Group to represent our region.

What I did not expect when I got into this work is that it would literally take over my life. Some of that is on me and I have learned from it. I am the kind of person that when asked if I can do something and I have the skills I would say “yeah sure I can do that”. I’m also the type of person who gets a bit frustrated when tasks which can be done quickly and competently take forever to be done, and I will often “just get it done”. This led to EGL becoming the predominate focus of my life, despite being an outdoor recreation instructor at heart, and wanting to spend more time out and about climbing or being out in the bush (now get your head out of the gutter all my dirty minded friends, it means the wilderness here OK!).

Heading into 2019, I wanted to manage this better and for the first half of the year I thought I had mostly succeeded in this but then my “let’s just get shit done” attitude kicked in. My self care and good routines almost flew out the window as I got busier. I was actively trying to step back from some of the work to look after myself better when I broke down.

For me the trigger point was having my Neurological referral to Mid-Central District Health Board (DHB) declined, by letter. I am going to put the content of the letter in my own words… “Sorry we’re broke, you’re not a high enough priority, go back to your GP”. During July I was informed that my GP who I had since 2000 was leaving, I had seen her to ask for referrals to Neurology and Orthopedics so I could access supports through the “new system” we were prototyping here.

After working with the EGL Principles of: Self-Determination, Beginning Early, Person Centered, Ordinary Life Outcomes, Mainstream First, Mana (a Maori concept that is hard to translate but a has meaning of the inherent worth and honor of a person) Enhancing, Easy to Use and Relationship Building, getting such a letter short circuited my brain. I was being told to go back to my GP, which I didn’t have; I had tried a “Mainstream” approach and I was certainly not feeling like building relationships, that I was the center of my treatment plan nor that any of this had enhanced my mana. I was devastated, I felt as if the last two years of personal work and many, many years of work by others was a waste of time.

A lot of individuals have had awesome Mana Whaikaha experiences and have more appropriate support that they could not have otherwise accessed. There have also been some amazing community initiatives that have sprung from the prototype. I totally believe in the Principles and Vision of EGL and the potential a values based model can have and that using such a model can produce positive, life long, inter-generational change.

However this not the experience of all of us. I think for me, being part of some of the high level design and leadership groups meant I had more of an understanding of how things “should be” implemented, this in turn meant I could see more differences between the intent of EGL and the implementation of the prototype; especially as I have at times, not found being part of the leadership process particularly easy to use, person centered nor enhanced my mana.

I have also found it difficult at times that others in the disability communities are saying that “disabled leaders” aren’t doing enough or aren’t being effective. All I can say is that personally I have given all I had to trying to ensure that disabled peoples lives are at the center of this process. My belief is the community representatives on the leadership groups have as well. “He ah te mea nui o te Ao? He tangata, he tangata, he tangata” a proverb translated as “what is the most important thing in the world? The people, the people, the people. This is what guides my work in many areas over the years and I will continue to uphold this the best I can. Some people would argue that I shouldn’t take it personally, but when you are on both the Regional and National Leadership Groups for EGL it is hard not to take it personally when I have literally run myself into the ground to try and make positive change for disabled people in NZ.

So, in saying all of that; I have spent the last few months piecing my life back together and I have taken time off EGL since August in order to focus on my health, my whanau and ensuring that we have what we need to have a good life. We currently have a support package that we are accessing to get on top of the housework and to get the outdoor maintenance done to where we don’t feel that everything in our life is stressful and difficult just to have the basics sorted. The house is starting look more tidy and a bit more “in order”. We have one room (office) that is now somewhat functional, and we will be starting on the other major “clutter” area shortly. It’s been such a relief to be getting on top of some of these things. If you follow my Instragram you will have been seeing some of the progress in my back yard. That is now becoming a place where we can relax (in fact I wrote some of this blog there) rather than just more work that I have to get done. As I get it tidied and replanted I will be trying to make it as “low maintenance” as possible so it doesn’t become uncontrollable in future as I get busy again.

I have a new GP, at the same practice, and are currently working through a “feedback” process with the medical practice. There had been some issues that I have experienced since the practice was amalgamated from several family practices. These issues added extra stress to an already stressful situation. Some of these issues could have been potentially life threatening in some instances for other patients. I am currently working a plan to regain and retain both my mental and physical health.

Just a few weeks before I had my breakdown I had purchased a new camera. Learning how the camera functions and gaining more knowledge in photography has been theraputic, its given me something else to focus on rather than just overthinking about some of the less than ideal situations that I have found myself in. I’ve also been experimenting with editing and learning how to use GIMP, which has given me more options than the editor I had been using previously. I’ve always had a love for cameras and photography so it’s been nice to have a camera that is more than a point & shoot and learning how to make the most of the equipment and the images.

So with all this going on, I really hadn’t noticed that the “decade” was coming to an end. So here we are in 2020, the last decade has certainly been a bit of a ride. Sure the year and decade hasn’t ended in the most positive of ways but it’s a new year and a new decade and we will see how things go from here. What I do know is that there is still some “mopping up” to go with feedback processes and making sure I have the supports in place in order to move forward both on a personal and professional front. I want to give a huge shout out to those who have rallied around to support us, feed us and just be there for us over the last few months. Knowing you all have my back has got me through this. Special mentions to Tina, Wai, Hannah, Jade and the Mid-Central Leadership Group for stepping up and taking over a long list of things I was doing at the time of my breakdown.

As we move forward I will continue to write about whats going on as I can. I know some of the next few months is going to be a hard slog emotionally but I know I have the right people around to get me through it.

I truly wish you all a happy new year and decade and I want to thank you all for your ongoing support. I’m going to do my best to make this year better than the last and continue to chase my dreams, I encourage you all to do the same. Aim to Thrive Not Survive!

Antnz

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