Saving & Sustaining Disability Supports In 2020

Buckle in and get ready folks, 2020 should be a year like no other as it pertains to saving and sustaining the disability support system. 

Before we can look forward, we must, as always, take a look back. By any reasonable measure; 2019 was a year of positive stories that should’ve aided optimism heading into what many believe will be a make or break decade for a sector all to often forgotten by the establishment.

In fact, 2019 was pretty great, really.

There was free, yes free, public transport for disabled people in the Waikato, something that was pushed over the line by local advocates. There was the emergence of The Cookie Project as a way to increase disabled employment that appears to be working and, to top it all off, Robert Martin was recognized for his services to the disability community with a knighthood on the New Year honours list.

Indeed, it was a year of highlights if you were willing to look past some of the negative headlines that were shining a light on funding challenges facing existing support systems and the viability of new ones.

And here we are, fresh into a new decade which kicks off with an election year, meaning it is the year of promises. Oh, can’t you feel the sense of optimism?

MP’s Must Show They Care About Disabled People

There will be all the usual discussion of voting and how disabled people make 24% of the population, which means every effort should be made to make the voting process as accessible as possible to the forgotten “voice”. Familiar? Yes.

There will be discussion, perhaps even a few throwing their hat into the ring, surrounding “actual disabled people” being involved in the political establishment, locally and nationally. Familiar? Yes.

Then there are the actual promises themselves, by way of policy and the visions behind such. In other words; there are the actual roadmaps, explanations and commitments behind all the meetings that will take place. Familiar? Yes.

Nothing in 2020 will be new, at least from the spoken word, but it’s the action part where the guts of whatever direction is taken will or won’t be found.

The various MP’s responsible for such matters on both sides of the house have had ample opportunity to engage with disabled people and their families about the issues impacting them, but like usual, the next eleven months prior to the polls will be when most discussions are had.

Make no mistake, there is a difference between politicians hearing and seeing the stories from their own eyes versus hearing it through reports sent by advocacy groups, representational orgs and the ministries implementing systems.

One could argue that the Ministry of Health (MoH), in particular, is coming into 2020 facing the most distrust from the disability community that it’s ever endured. How to turn that, distrust at one level and uncertainty at the core, will be no easy task.

In order to win voters, Carmel Sepuloni, the Minister for Disability Issues, and Associate Health Minister Julie Anne Genter, need to front the criticisms that came in 2019 head-on and actually discuss them.

Just how did the MoH come so close to making such radical cuts? How can disabled people, many of which make up eligible voters, trust that there is actually a sustainable system in place to ensure it doesn’t become a possibility again? How much further investment is needed, not just to cover all basis, but assume sustainability?

All key questions need to be asked because what happened in April 2019, and the lead up to it, wasn’t the MoH just deciding to be bad people and take care away from disabled people. Quite the opposite, in fact, it was something which the powers that be determined was a requirement in order to be cost-effective.

The only way to ensure such an occurrence doesn’t happen is to invest. Either that, or finally admit that the system may not be as inclusive as many would have you believe.

In their hard-hitting report towards the end of 2019, NZDSN (New Zealand Disability Support Network), advocating on behalf of providers, said that there needs to be a national discussion about what a “reasonable and necessary” taxpayer contribution towards Enabling Good Lives and what its sustainability is.

The question then becomes, if it turns out that the new system isn’t sustainable, then what?

That’s why, whichever way you lean politically, 2020’s election will likely see policies that promise a significant uptake in investment towards the Disability Support System (DSS). There will be an announcement as to the future of Enabling Good Lives, and this could potentially include a timeframe for when the “new system” rolls out nationally.

It’s hard to see what else either Labour or National can do in order to make a splash, and by any sense of scale, this is an area where a fresh coat of paint is needed. Whilst Enabling Lives may represent the great new frontier, behind how the principles are being implemented reeks of the old ways of doing business.

It all becomes about how much either party and their responsible ministers truly care about doing something in this area.

The absolute worst result would be a middling, half-baked and long-term vision that is light on detail. You’ll likely get “over three years” type of talk from politicians, but if there is no substance behind whatever is said, alarm bells should rightly ring come November.

Also, let’s not forget how political the End of Life Choice bill and Legalization of Cannabis will become in terms of the disability space if they haven’t already. These two conversations have the potential to overshadow some of the crucial questions that need to be asked surrounding how support for disabled people is delivered and sustained in New Zealand.

Be very wary of that, every effort must be taken to ensure that all voices are heard and that there are actual answers to what those voices will ask.

Stop Trying To Control The Language About Disability

How a person with a disability chooses to talk about disability or identify with it is an important conversation, but it may not be one that will impact much change in the hearts and minds of the so-called ‘ignorant’ non-disabled. 

Language of identification seems to be a discussion that just won’t go away. This comes as no surprise, how people choose to identify is a deeply rooted and basic right, and the disability community is one that is constantly fighting to preserve the rights of its people, but the tension amongst some groups tends to boil over at times.

That tension can be counter-productive at times, and in the eyes of some, it matters little in comparison to other the discussions being had surrounding other areas of the disability rights movement.

The question then becomes, does it really matter how a person with a disability chooses to identify or talk about disability?

The short answer is yes, but it is everybody’s personal right to determine how they label their disability/condition/impairment in any space. Nobody should be told, especially by another disabled person, how to identify or what language is the correct to use when talking about issues impacting the disability community.

Within that community is a diverse amount of beliefs, some think of language and identification as ultra-important, while others think it’s an argument with no real depth.

Playing devils’ advocate for a moment, I’ve met plenty of non-disabled who often express to me their deep fear about language when it comes to me, ‘the disabled person’. They say that they are scared and don’t know how to talk about disability or how to approach it when confronted by it in public.

One person I spoke to this week about the subject of language and disability made some really good points that further confirmed a thought I’ve had for a long time about how the invisibility of disabled learners in school tends to aid the confusion and fear for non-disabled later in life.

“I’ve never had personal experience with disability at all, so how do I know the correct way of talking about it? Most of those kids were in the special unit at school and we never saw them.”

Some people I’ve spoken to had gone through their entire lives without ever experiencing a connection with a disabled person in any shape or form until having a conversation with me.

Can we really blame them for their ignorance? Of course not, disability is not an understood or desired part of mainstream society. The latter shouldn’t be a priority, disabled people shouldn’t be desired based on disability alone but they should be accepted as a part of the norm, regardless of whatever disability they have.

The words disability and disabled were mentioned four times in that last paragraph alone. It isn’t the word that is the issue, rather the thoughts associated with it.

Stop Trying To Control The Language About Disability

The point is that for those of us who experience disability, trying to control the narrative about disability is completely impossible to achieve. Furthermore, why is it our right to decide how we are looked at and talked about?

That’s where the ‘nothing about us without us’ terminology has real problems with me.

Some disability advocates want to have it both ways, change the labels and the language, as well as the thoughts that come as a consequence of it. But there is no certainty that the thoughts associated with disability by the ignorant will change, there isn’t even any proof that it would help a little bit.

Much of these conversations serve to make disabled people feel better about themselves, and perhaps that leads to the biggest question of all, why do we place so much personal emphasis on how we are officially described?

There is no real proof that a change in the official description would make us feel better about ourselves because it’s only ever been a discussion that’s occurred within the disability community for the most part.

The answer to increased participation and inclusion in mainstream society for disabled people isn’t found with how they choose to identify within or outside of the disability community, it sits with the ideals associated with the very sight of them, ideals that often aren’t triggered until being confronted by them.

For us, the disabled, trying to enforce a certain type of language doesn’t address that. Identify how you choose, do what you choose, but don’t expect everyone else to beat to the same drum.