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Wheelchair User, Jessica, doing Mamie's makeup on set

Reflections on a long overdue but welcomed systems transformation

 

 

 

Last week the 1 million strong disability community of Aotearoa welcomed the news we have been fighting for: a complete transformation of the sector. They are:

 

Establishment of a Ministry for Disabled People

Implementing the Enabling Good Lives approach to disability support services

Introducing the Accessibility for New Zealanders Bill

Establishing a new Accessibility Governance Board

 

I have lived with a disability for 18 years now and I know that these systems will ensure that we won’t have to fight for what we deserve the way that myself and every other disabled person has to date.

Establishment of a Ministry for Disabled People

Given the size and diversity of the disability community, it’s quite amazing to me that this doesn’t exist yet. What that tells us though, is that we are, until now, an invisible group. Disability has been treated as a health issue and something that needs to be ‘treated’, as opposed to what it is, which is simply just another way of being in the world. This health-based approach, therefore, doesn’t include housing, transport, accessible social development, or education.

 

Under the current system, we have to go to every ministry to advocate for our needs in each sector. Anyone who has ever dealt with a government agency knows how long and complicated that process is. Now imagine doing that for each aspect of your life while belonging to a community already so under-funded and under-represented. It’s exhausting and draining work.

 

The disabled experience is multi-faceted and requires a strengths-based approach applied to it. A ministry just for disability will host all of these under one umbrella. What I hope for is the disabled voice at every conversation to make sure that our needs and interests are met at every level of government and society.

 

 

Implementing the Enabling Good Lives approach to disability support services

The Enabling Good Lives (EGL) approach has been trialled in various regions across the country. Traditionally, support hours have been given with outlines on where those hours can be spent based on the results from a needs assessment. For example, x hours can be used for housework and x hours for personal support. EGL gives the individual and their whānau more autonomy over where there can get that support.

 

Disabled people are a lot like non-disabled people in the sense that life changes (who knew?) Everyone, disability or not, can appreciate how circumstances such as jobs and family can change overnight. The complication for disabled people is that with every change comes a whole lot of organisation and coordination to make sure that your support systems can cater to your newfound needs.

 

This is one example of how the increased autonomy provided by the EGL model makes this process incredibly easier. Your day-to-day happenings shouldn’t be hindered by support restrictions. Your life and the decisions you make for it are in your own hands, and it is one that I know will make so many lives that much easier.

 

 

Introducing the Accessibility for New Zealanders Bill

This update is one that should’ve happens decades ago. It’s quite amazing that legislated and mandatory accessibility hasn’t arrived yet. A lot of non-disabled people I speak to believe that this already existed until I pop that bubble (sorry, friends).

 

Aotearoa currently has accessibility ‘standards’, meaning that making your business accessible is framed as a nice thing to do rather than a must. These standards are not enforceable by law. This is how we end up with scenarios where that accessible bathroom is at the top of a couple of cute stairs.

 

The Access Alliance have been advocating for this for years, and it’s beautiful to see their hard work come to light. We still operate in a world that sees disabled people as on the fringes of society. Accessibility is the crucial step in changing the mindset of disabled people as an excluded group. But if you build it, and build it accessibly, I promise you we will come. It’s just that currently we don’t come because we literally can’t. Forget the ‘ladder’. We can’t even get into the building. We can’t talk about inclusion if we are not at the table.

 

 

Establishing a new Accessibility Governance Board

 

This is another change that would seem like a no-brainer. The Accessibility Governance Board would back a ‘new accessibility framework’ along with the incoming legislation. It will be run by people within the disability community and whanau.

 

Having disabled people front and centre of this mahi is probably the aspect of this whole change that I am most excited about. For too long we have been ignored to the detriment of our safety and well-being. To put it simply, including disabled people in this conversation will make sure the ‘accessible bathroom is upstairs’ scenario doesn’t happen. This is an obvious no-no but seems to still be a thing. There is a lot more to accessibility than a ramp, such as digital and web accessibility. These are changes that only someone with lived experience can call out.

 

For me, the governance board provides the wrap-around layer that is crucial for such drastic change as this. It will make sure that the aspirations from this transformation are realised and actioned upon. The slogan ‘nothing about us without us’ was coined by the disability community, and I hope this is realised in an authentic and meaningful way.

 

We have a lot of work to do, and most of it hasn’t been called out explicitly in these updates. The inequity between ACC and Ministry of Health funding is just one example. In any case, these transformations are ambitious and I imagine would take generations to get to where we need to for full inclusion. We are still not there will gender, indigenous, and ethnic equality. This will likely take just as long but I remain hugely hopeful that these announcements will plant the seed for true and authentic change in how disabled people are valued in this country.

 

 

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