This year we started September in Level 4 Covid19 lockdown, which means keep your butt at home unless you are going out for essential items, medical treatment or for a short period of activities in the area local (walking distance) to your home. No “fast food”, no going to the gym, no gatherings, online school, work from home if you are not an essential worker, no funerals or tangihanga (funeral directors still operate but no gatherings), keep to your bubble, physical distancing and masks if out. My region moved down to Level 3 at mid-night of the 31st of August, which a “softer” lockdown; work from home, no seated dining, limited movement (stay local), gatherings of no more than 10 for funerals or tangihanga, weddings, church, non-contact customer pick-up or delivery, stay local. This was just in time for my birthday, after a couple of weeks without being able to have any form of take-aways I was craving Chinese food, so we made use of delivery food. My birthday was spent watching the Paralympics, not checking emails, eating junk food, Chinese food for dinner and cheesecake for dessert.
Never would I have thought that I would have to be putting “Worldwide pandemic” planning into place and action. With Delta touching down and lockdowns being used, I have had to organise the “Enabling Good Lives in Our Community” event we were due to hold on Sept 30th. This is a 200+ person event, with a panel, a guest speaker, catering etc. We have postponed this event until November, all going well and NZ is back at Level 1, which allows gatherings over 100. I have managed to reschedule most of the panellists, the speaker and the venue. I am just in the middle of turning what was to be a September 30, “Enabling Good Lives in Our Community” physical event and panel discussion into a virtual event; unfortunately, we couldn’t quite pull it all together in time, and it will be held on THURSDAY OCTOBER 6th at https://www.youtube.com/channel/UCLZad5r9iSIxIYCfX0TO2pQ The virtual event will be focused on the Enabling Good Lives Vision and Principles. I was hoping we would have had announcements about the Disability Support System from Ministers Little and Sepuloni by now but it seems these announcements have been pushed back until mid-October. This once again leaves us all in a “holding pattern” not really being able to do much because we simply don’t know what is coming. Hopefully, by the event in November, we will have some certainty about where Disability Support Services “sits” within Government and how that service may look like in the future. I’d love it if we could all wake up one day and all of NZ suddenly switch over to an equitable system regardless of impairment cause, but the reality is, this type of change takes a massive amount of time and energy to achieve. Tune in if you want to have a bit of a listen about the EGL Principles, Disabling NZ History, Paula Teserio speak with Martin Sullivan about why EGL is important for local leadership and we’ll try and answer some of the frequently asked questions and any questions that have been sent in (eglinourcommunity@gmail.com)
In my opinion, making this change is not helped by the Ministry of Health (MoH) culture; with high staff turnover throughout the EGL process, a lack of succession planning and a lack of information sharing from one person to the next has hampered this process since the Project Lead left for the Prime Ministers office shortly after Mana Whaikaha was established. What annoys me the most about the lack of information sharing is that although we as leadership have flagged this concern, yet it is still proving to be problematic. Before Mana Whaikaha was established there were a number of virtual testing groups to look at specific areas of potential change within disability services. There were a number of groups, and we had people from all over the country contributing to these virtual testing groups; literally, thousands of hours of people’s time went into lengthy discussions. I have recently been doing some work on one of the areas we looked at in the virtual testing groups. My suggestion to the contact person is that they may want to pull the information from these testing groups as it will hold some important information, and “why re-invent the entire wheel if some of the work has already been done?” This is the second person I have suggested to look at that information first; instead of disabled people, their families/whanau and allies having to cover the same ground, yet again. Many of those that we have been working with at MoH were: a) not aware this work had been done, and b) had no idea how to where to look for it. If officials want to know why there is reluctance for disabled people to get involved in providing feedback and advice? We are sick and tired of having to do the work that systems should have done or be doing, over and over again when we’re not listened to and the information they have gathered through this process has so much value that they lost it????
Another thing that I am finding frustrating is around the “cross-agency agreements” to work together, so often this work has depended on having a key person in the agency; someone who knows someone”. Yes, “Relationship Building” is an EGL principle, but it seems that we often have lost connections with agencies because someone has moved on from a role, leaving a void of information and processes to streamline systems for disabled people and their whanau. Some of the agencies that have agreed to work in an EGL way have decided to take their waka in a different direction; this is disheartening because one of the original intents of EGL is to make disabled people’s lives easier, not tie us up in another multi-agency, silo-based system. The transformation of disabled people and their family/whanau lives won’t be fully realised until all the “systems” are on the same page, and actually listening to disabled people instead of worrying about their Key Performance Indicators. I totally understand that there is a lot of different pressures on agencies at this time, particularly with Covid19 disruptions, but we need to stop de-prioritising disabled peoples needs. Internationally the disabled population is around 15% and here in Aotearoa is around 20%, a significant proportion, that consistently gets de-prioritised; we are a community that is part of every other part of the population, no matter your gender, ethnicity, culture, sexual orientation, etc. We are hugely diverse, we have a huge amount of experience and knowledge to bring our wider communities but because of the way that a lot of society operates, we have been systemically institutionalised because our needs are constantly overlooked and de-prioritised. We want to access, live and participate 100% as part of our wider communities yet we find we are constantly being “overlooked” so the access and the tools we need to do be part of our community and for our unique talents, skills and knowledge to be seen, acknowledged and valued.
If I am feeling frustrated with this, I don’t blame the rest of disabled New Zealanders for being just well and truly over it. We’re constantly being told that people are “working at pace”, but there has been a complete lack of communication about what that work is. I have a little bit of inside knowledge and I am frustrated, I can completely understand why people are pissed off. We were told that announcements were to be in September, now we’re told mid-October. For some, this is yet another deprioritization.
I rounded out September with an online introduction to EGL for some of the 3DHB team with Imagine Better. I have really enjoyed the face to face sessions we had done before Delta made its way to NZ. I found it a bit weird without the face to face feedback, the lack of body language and not being able to be as spontaneous with interactions with people. I am glad to be out laying down some foundational thinking about EGL in a setting that will have a large impact on disabled people and their families/whanau and their overall wellbeing. Taking on and then passing on knowledge has always been a part of who I am. With the loss of several disabled people and allies over the last few months, re-affirms to me how important it is to pass this knowledge on, while we can, so others can in turn pass that knowledge on before it’s gone. For me, I’m glad to be just one of the people that hold knowledge, and I hope that others can bring their knowledge to the table. It’s when we all bring our knowledge together, and truly listen to understand other people’s knowledge, that is when real transformation happens.
With all of this going on, I have been deliberately setting a few hours here and there to keep exploring and play with my camera and editing. I know that if I don’t take this time out, that I get way too bogged down in “the work”, and then things just go downhill from there. I am thoroughly enjoying both the camera, and I have added a macro lens to the mix, which I am looking forward to what images I can capture to add to my “See The Wee Things” series. I have also started buying some of the peripherals that I will be needing in future when I buy a proper desktop PC. I started with a monitor; which I am absolutely loving for editing pictures, it is a huge upgrade from the laptop screen! I must admit that I am looking forward to having a decent PC to work from. I just have a few bits of outdoor gear that I need for both ADNZ Raven and myself before I start saving towards the PC.
I guess September was one to remember, take care of yourselves and each other, get vaccinated if you can!
Antnz
Nā tō rourou, nā taku rourouka ora ai te iwi. With your food basket and my food basket, the people will thrive. (Whakatauki: Maori Proverb)
I understand your frustrations! I wonder what the percentage of disabled populations would be if they included family and whanau! Happy to be one of your allies. Keep up the conversation going!