Where did the last two years go??
The Facebook “Memories” function is both a blessing and a curse sometimes. It can be a curse by reminding us of sometimes painful moments, but the flip side of that is that “Memories” can also be a way remembering the good times and pivotal moments of your life as well.
This month one of those pivotal moments came across my screen. It was May, 2 years ago that my Enabling Good Lives journey started. Wednesday 3rd May 2017 was the day that the Enabling Good Lives (EGL) Co-Design team made their way to Palmerston North to introduce the concept of “System Transformation” to us. Not only were they introducing us to the EGL Vision, but they were letting us know that a “System Transformation” was happening and potentially a prototype would be launched in our area to “test” some of the thinking behind such change. I went along being a cynic, thinking “this is probably just another bullshit government consultation”, that would just tinker at the edges of the systems and overall would just put in more hoops for disabled people (& families/whanau) to jump through to access supports and services. At that meeting there was a lot of emotion from a lot of disabled people and families, these were people who were frustrated and exhausted from not being supported in way that met the needs of themselves or their family members. I also went to this meeting thinking it was going to be run by government officials, instead I found a group of disabled people and their family members that were passionate to bring change to a broken Disability Support System.
Being the person that I am, I asked the Co-Design member some “to the point” questions such as “Could this process potentially give us a way to bring through something similar to the American’s or Canadian’s Disability Acts?” Due credit to the team, it was a pretty big question but the answer of “well…… potentially, we’re at the start of the process and there a lot of factors that could change with elections coming up, but this is a big picture thinking type project.” That piqued my interest, that and the fact that this group had been working with Ministry of Health officials to start the thinking on a Principles based systems. (For more information on the EGL Background go here: http://www.enablinggoodlives.co.nz/about-egl/enabling-good-lives-context/). It piqued my interest because traditionally Disabled and Deaf people have had no real input into policies that effect their lives the most.
I’ve done a bit of self advocacy in the past but never really seen myself as an “advocate” or someone with the right experience to be delving into the “policy” space. I am at heart an outdoors enthusiast and instructor, with an interest in social and community development. I was a little surprised to have experienced disability advocates suggesting that I put myself forward for the Mid-Central Regional Leadership Group. I’d finished some study in 2016 and by the time this hui (meeting) happened I was starting to get bored, so my thought process went something like this: “I’ve got time on my hands, I’ve got some leadership skills, I can think critically, I am good at big picture thinking, I’ve got the ability to decipher official documents and I tend to call a spade a spade. Eh, why not give it a go”. There have definitely been hard times during this process and I have asked myself if that was such a wise decision.
The Mid-Central Leadership Group was formed, comprised of 5 disabled person’s representatives, 1 People First representative, 3 family/whanau representatives, 3 mana whenua representatives, 2 provider representatives, officials from Ministry of Health, Ministry of Education, Oranga Tamariki, and ACC to be independently facilitated. This was the “next phase” in the Ministry of Health Disability Support System Transformation, from there we had national working groups and virtual testing groups going on alongside the work we were doing to inform the prototype development. About a year into the process the Mid-Central Leadership group made the decision that it was probably a good idea to have a better connection with the National Leadership Group in order to have an idea of what was happening “big picture” as most of the work that the Regional Leadership group was focused on was prototype development, I was honored to be selected to be the Mid-Central representative to the National Leadership group. In October last year (2018), all the work from the previous 18 months became a reality and Mana Whaikaha was launched. Since then the work has continued and in some ways increased.
As I have reflected on my own EGL journey I have learnt so much about policy, law, politics and at times processing all this information has been overwhelming. I have also found it overwhelming at times to hear so many stories of unacknowledged and unmet needs for support; which is both a driver for me doing this work and also something that breaks my heart. I just don’t understand how successive governments have “justified” not listening to one of the most vulnerable (and I don’t use that word lightly) populations of our society. The things we are working towards now are not “new” issues; our community (and some very dedicated advocates) have been pushing for positive change for decades. Even now, 2 years down the road, I am surprised at how many layers of complexities are involved in each separate issue. It is less overwhelming now but some of the issues that Disabled and Deaf people face are so entrenched in our society it is going to take awhile to see people have their rights upheld and their needs met.
I have also learnt a lot about how at times communities can be both a support and a source of very harsh criticism. I have found an amazing group of people in our community as I have been out and about getting to know people better so I can better represent their voice within the process. I am not an expert in the “disability space” and I fully acknowledge that, I am there to try and represent the stories of our wonderfully diverse community. I am one of those people that once committed to something tries to see it through as far as I can and at times that has been at the detriment of my own health because I will keep going and going to try and complete objectives.
I’m learning a new language so that our Deaf community can have more input into the process. I am in no way “fluent” in NZSL but I have enough to be able to “muddle” through, and I keep the interpreters on their toes by both signing what I can and talking when I don’t have the NZSL vocab! Some people have asked me why I am learning a language as part of this process; my response to this is to go back to the EGL Principles, in particular “Mana Enhancing” and “Relationship Building”. I believe being able to try and communicate in someones first language is more Mana Enhancing and Relationship Building than having to drag an interpreter to everywhere I go. (To the interpreters reading this, thank you for your work and I really appreciate what you do, not wanting to drag you everywhere isn’t personal!)
It’s certainly been a process of learning about the complexities of communities and power dynamics. Now it is time for Disabled and Deaf people to try and claim some of that power, if we don’t once again we will have non-disabled and hearing people speaking for us. Get involved in grassroots level groups and organisations, have your say, take the opportunities to take your power back. Venting on social media is all well and good but what practical things can you do to improve our situation? Write submission, talk to politicians, email MPs, take seats at a table when offered, crash conferences when you can. I think though one of the things that I have found really disheartening is some parts of wider community have been downplaying the importance of the current work. I know some people think that this is just another round of “bullshit government consultation” and that EGL is not going to improve the current situation; and in all honesty I totally understand why people feel that way considering the history of how Disabled People and Deaf have been supported (or not). I have moments of “is all this work actually going to improve people’s lives or am I just wasting my time and energy and investing a lot into something that is going to fail”. But in the end when I’ve heard the stories from individuals that are finding the process is improving their situation it becomes worth it. Many people within our Disabled and Deaf community are still going to have trouble accessing appropriate support unless the wider systems that interconnect are also transformed. This is going to take a long term, steadfast, sustained effort to see all New Zealanders regardless of personal circumstance receive the support required to live full, contributing lives.
I fully acknowledge that there have been parts of this process that have been “less than ideal” in regard to communications, consultation and probably a myriad of other things that I can’t recall right now. Some of these things have been out of our control as “leaders” because, lets face it, we are dealing with government and doing anything with government is an exercise in patience to say the least. There have been times that we as leaders have not felt listened to by officials, and it has often been said “we are having to train officials in how to work with Disabled people and Deaf.” I guess there will always be critics, but if you are going to be a critic please take into account that we are people, we are trying and we are working our asses off to try and make Mana Whaikaha reflect the needs of our community. We do not have a lot of time to show that System Transformation is possible, and we need to show that it is possible if we want to see a national roll-out of a transformed system. The new system may not be the same as what we are trying here in the Mid-Central and what we will have by June next year will be different to what we now see. The information that will be gathered from the evaluations will be critical to show government the unmet need, the actual numbers of Disabled and Deaf people that aren’t receiving supports (20% of people that have contacted Mana Whaikaha have not been “known” to they system) and the true cost of Disability. It is going to be up to us to show that if Disabled and Deaf People are properly supported that the community can contribute to society rather than being a “cost”, and I know that I will be re-iterating the “well being” of our community needs to be addressed.
At this point we are trying as hard as we can here in the Mid_Central to try and implement system based on the EGL Principles (http://www.enablinggoodlives.co.nz/about-egl/egl-approach/principles/), the system may not be an infinite pot of money to access all the ultimate supports that a person wants, but we want a personalized system that break down walls of silo based funding, that looks at a person as a whole being not just their impairments and is flexible enough to account for a person’s changing circumstances. I believe as a community we need to listen to those that have come before, listen to those that are currently experiencing situations that are contrary to a “good life”, and keep advocating for positive change. If we are united our message is stronger.
I am unsure where this journey will go, nor do I know if or when I will take another path, at this stage I am proud of what we have achieved. What I hope, is that we will see positive change for New Zealanders. To all those I have worked with throughout this process, thank you for your work, thank you for your commitment and keep on being change makers, without change makers we could not even begin to work towards positive change. We all have the right to #ThriveNotSurvive.