Category: A Different Light

A Different Light – 23rd November 2024 – Disabled abuse survivors still face inadequate care

Last week survivors of abuse in state and faith-based care received a formal apology from the Government. There was a range of apology givers – some were received with positivity, some seemed hollow, and then there was  the Attorney General, who was booed, to the point that her apology was inaudible. The whole event was harrowing. The extent of the enquiry and the subsequent report is overwhelming. The magnitude of the abuse was mind boggling and equally mind boggling was the amount cover-ups and denials that went on to protect the perpetrators and to not deal with the obvious atrocities that were going on. Disabled people were overwhelmingly represented in the survivor cohort.

Disabled people have continued to receive inadequate care past 1999, past the period considered by the report. In September 2008, the Social Services Select Committee concluded its inquiry into the quality of care and service provision for disabled people. The inquiry was prompted by concerns raised in the media about two major residential service providers and by more generally expressed dissatisfaction with current service provision.  The report from the enquiry covered instances of abuse. One of the report’s recommendations was to “appoint an appropriately funded lead agency with responsibility for disability issues, accountability for the disability sector, and a role monitoring the sector”. I believe this eventually lead to the establishment of Whaikaha Ministry of Disabled People which was effectively dismantled two years later (in August) by the Government.

Another recommendation was “the introduction of legislative change to strengthen and expand the scope of Government funded advocacy and complaints services for people with disabilities”. This never eventuated.

Yet, another recommendation that got no traction was to “ensure that age-appropriate services that provide a good quality of life in ordinary surroundings are made available for younger people with high needs, who are now placed in rest homes inappropriately. We consider this should be achieved within two years”.

In Northland there are numerous disabled people who are under the age of 65, living in rest homes with long waiting lists for the few age-appropriate residential facilities there are in Northand. To make this dire situation worse the Government has put a freeze on any new referrals of people in residential facilities.

The report from the Royal Enquiry into Abuse, (Whanaketia – Through pain and trauma, from darkness to light), has made 138 recommendations. Prime Minister Luxon has said that the Government’s response could be summarized into three categories, acknowledgement in the form of a formal apology, support (redress) for the survivors, and preventing the abuse from either happening again in state or faith-based Care.

The first item the acknowledgment and formal apology has been delivered. This leaves the two monumental tasks of redress and prevention.

Will apologies be enough to put things right? The simple answer is NO but it’s a start. The real path to restoration will be putting in place the tangible recommendations made in the report. Of course, a fair delivery of redress is of utmost importance and sooner it happens the better.

Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception, a Whangarei based disability advocacy organisation.

A Different Light – 12th October 2024 – dogs make our lives a little cuter, a touch crazier and a lot happier

Neurotic, traumatised, nimble with a touch of forgetfulness- no I am not talking about my PA or myself for that matter! I am talking about our one remaining Sydney Silky/ mini foxy cross dog, the lovely Lola.  My brother Tim called around last weekend, looking revoltingly trim with his two Schnoodles Schnauzer/poodle cross. Although they were kept outside little Lola, was panic stricken, shivering uncontrollably, while the Schnozefrs (let’s just call them that) stood on their hind legs peering through the ranch sliders looking like an identical pair of Hairy Maclarys. Lola quivered in fear. She even continued to shiver when we fed her dinner. (She managed to quaff it, nevertheless). We think she has Post Traumatic Stress Disorder from when she got chased by a Rottweiler and a Blue Heeler when we first moved to Ruakaka. Although Lola is one of the smallest dogs I’ve ever seen, she can run like hell! She outran the Rottweiler and Blue Heeler, and just kept on running. She was missing in action for hours, finally she came home in the middle of the night, scratching at the door.  The tables were kind of reversed when the Schnozfers broke through our garden gate. By the time Tim raced after them they had vanished from sight. Tim yelled his one-word, all-purpose modern-day command “Bah!” and they eventually bounded out of the nearby stream, thrilled with themselves.

Now, I had been watching a very serious and cute doco about dogs and their minds on Netflix. It informed me that dogs are one of the most diverse breads of all animals. If an alien compared Lola to a Great Dane, they would think she was of a totally different species, even though 99% of every dog’s DNA is pure wolf. It also pointed out that as far as species go dogs are remarkable survivors- and that they have survived by being the friendliest not so much the fittest.  Over thousands of years dogs have developed the ability to open their eyes wide mimicking the way humans relate to each other, or in other words, “looking at me with puppy dog eyes.” Reality was, however, betraying this theory.  Neither runaway Schnozfers nor our trembling, snapping Sydney Silky-Foxy were giving me much hope.

In the doco, cognitively blessed and super friendly canines were winning the day. The brightest of the bunch were becoming support dogs for a range of individuals with impairments, including a super cool pooch who would wake up a war veteran having traumatic nightmares, by pulling on his bedspread. Yes, service dogs are a whole different breed (excuse the pun). The doco showed them performing an awesome array of nifty tasks-opening doors, opening fridges, turning lights off and on, pulling off clothes and picking things up. My wife floated the idea of me having a service dog- putting on my socks and carrying kitchen ingredients, to relieve her efforts. Could Lola be trained? Well, no, not after this display.   I also just don’t think either Lola or I have the patience to stick to the rigour of training. Motivation is key apparently, and while I am pretty keen, my socks are clearly not motivating her.  Maybe, a larger that dog- apparently Golden Retrievers are the best-   could help me?  Nah- I don’t think I have the disposition to be that bonded with a dog that’s any larger than 1 ft by 6”. I have had many a bad experience with big dogs. When big dog owners say, “just relax- he/she’s friendly” – this should actually be translated as “they can smell your fear. Even a guide dog growled at me once!  The outlook for my wife’s relief from these tasks  is not looking positive.

We really ought to applaud those who work hard to train and adapt the real Monty Service Dog.  They are indeed a rare breed – both the dogs, the trainers and the service users. They all work so hard to channel that apparently instinctive friendliness and urge to help that these clever dogs have and make such a profound difference to the lives of the lucky ones that get to benefit from them – those far more deserving than me.  So, I’m quite happy to admire from afar and get some laughs from my more familiar, slightly Scooby-doo-ish  canine relations – Schnozefrs, Sydney Silky Foxies and all.  What they all have in common is that they all make our lives a little cuter, a touch crazier and a lot happier.

Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception, a Whangarei based disability advocacy organisation

A Different Light – 14 September 2024 – Accessible Kaipara District- Yeah- nah

In Tai Tokerau we love the good old catch-all retort- ‘yeah nah! On the face of it, it is an ambiguous response. But what it really means is ‘ Yes, I understand what you mean, but NO. A more formal and vaguely pompous version of giving this message  is “noted”.

I had the privilege several months ago on being on an advisory panel to help develop a Te Tai Tokerau Regional Accessibility Strategy.

This was intended to be a cohesive regional approach allowing councils (Whangarei District, Far North District, Northland Regional Council and Kaipara District), to share resources and learnings to work better together for our communities across boundaries. The plan intends to give Te Tai Tokerau a shared vision, values, outcomes, and actions to improve accessibility and the experiences of people with access needs. It talks about what we can do to make Te Tai Tokerau more inclusive and accessible for everyone. The plan also serves as a strategic framework for each individual council to develop their own implementation or action plans, which would be made available on individual council websites when ready. Seems a no-brainer, right?

I was excited by the prospect of an accessible Northland, not only because this would go a long way to make our region non-disabling, but by the potential economic benefits to the region. Having a region that is accessibility connected through both transport and infrastructure, would enable us to become a desirable destination for tourists who are seeking an accessable experience. The bulk of these tourists these days tend to be older and have more disposable income as opposed to the younger adventure-seeking tourist who bolts down to Queenstown for a bungy jump. They are a lucrative market.

The strategy was developed by staff from the four councils in Northland and a working group made up of people with access needs (including myself). There was also wide consultation with the disability community. The strategy was then ready to be adopted by the four councils.

The Northland Regional Council met on 23 July and following after discussions about the importance of accessibility in the Northland region and the wide spread considerations articulated in the strategy, they voted unanimously to adopt it.

On 27 June, the Whangarei District Council discussed the strategy at their meeting with Councillor Peeters remarking that “it would give our region a good marketing strategy”. The WDC unanimously voted to adopt the strategy.

On 11 July, the Far North District Council held their meeting where the strategy was also discussed. Their focus was on how the strategy could start to be implemented before waiting for the next Annual Plan cycle started. They too unanimously voted to adopt it.

Unfortunately, the Kaipara District Council was a completely different kettle of fish. On the 28 August at their council meeting, it was announced that there was a change in the motion to adopt the strategy to a motion to “note” the strategy. There was some discussion about what ‘noting’ actually meant.  For a while it seemed there was no black and white answer to this. From watching the video of the meeting, it seems clear to me that this would mean a clear diluting of commitment to the strategy.

Councilor Wilson-Collins outlined that there would be no cost – it would be business as usual, as the strategy  doesn’t change any process regarding building or resource consent processes. What it does is ensure that staff are trained to recognise the needs of the most vulnerable marginalised people in the community. Surely, it’s time to think about basic ethics and equity in servicing our community, and yet Kaipara can’t even adopt a policy to promote this?

Three councillors raised their concerns about not adopting the strategy, but only ‘noting it”.  Councillor Wilson-Collins put forward an amendment that the motion go back to it’s original form to adopt the strategy.  This was promptly voted down by councillors who felt that the strategy would expose them to future costs and impose additional documentation that would stop the Kaipara District Council’s ability to be “flexible” in the future. The Council then voted to simply ‘note’ the strategy. Speaking of noting it’s interesting note that the Kaipara District Council is the only District Council in Northland that does not have a Disability Advisory Group, go figure!

I rang Councillor Wilson-Collins and asked her how she felt about the Kaipara District Council’s decision. She said, “I’m disappointed with this decision of Council. By only noting the strategy, we have put concerns around resource consents and the building code before people’s needs and failed to commit to promote equality, inclusion, and participation for all.”

The Kaipara District Council also voted to disestablish their Maori Ward Te Moananui o Kaipara. Kaipara District and Upper Hutt City are the only two councils out of more than 40 with Māori wards to disestablish them. Would I like to live in the Kaipara District?  Yeah nah!

Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception, a Whangarei based disability advocacy organisation

Downloadable: A Different Light – 31 Aug 2024 – The Government are basically saying Disabled People are not up for the job

The 80’s gave me a taste for what is now regarded as ‘retro’ music and this week I have been slightly obsessively listening to Public Enemy’s song “Fight the Power.” Public Enemy changed the hip-hop scene into a vehicle for political expression. “Fight the Power”, is a seminal protest anthem blending aggressive beats with politically charged lyrics. It is a call for action.

On Thursday last week the Coalition Government announced plans to strip Whaikaha, the Ministry of Disabled People,  of its responsibility for delivering support services, shifting it to the Social Development Ministry. Whaikaha will be downsized into a smaller, standalone department with a focus on advocacy and policy advice. Just two years after its establishment Whaikaha is being massively scaled back following the findings of an independent review. The review, led by Sir Maarten Wevers, found the delivery of support services was inconsistent and hampered by the way Whaikaha had been set up.

When I heard the announcement, I was gobsmacked. I was still in the process of recovering from the announcement in March regarding the restrictions in Flexible Funding. In one announcement Whaikaha the Ministry of Disabled People, has been dismantled. The Ministry is something that disabled people have fought and lobbied for, for decades, wanting our own Ministry that would preside over disability services and advocate for disabled people’s rights in New Zealand. Yes,  it has had a few teething problems but there is no reason to kick it into touch. Whaikaha was developing a strong sense of disability culture with nearly 40% of its staff identifying as disabled. By shifting the delivery of Disability Support Services to the Ministry of Social Development the Government are basically saying disabled people are not up for the job. By scaling Whaikaha down into a toothless advisory and monitoring entity, it sounds much the same at the Office of Disability Issues which did effect much change over the years. What the difference will be between them? No one seems to know.

This has really sent the disabled movement in New Zealand back decades. Other concerning aspects of the announcement was a pause on the Enabling Good Lives roll out and Indicative budgets and monitoring of Needs Assessment and Service Coordination organisations (NASCs) being reinstated.

Over 30 years ago, Disability Support Services sat in the department of Social Welfare. These were then trundled over to the Ministry of Health and for decades disabled people have felt like the poor relation of the monolith that is Health, until 2 years ago when we finally got our own Ministry. Now things have gone back 30 years.

The Enabling Good Lives approach attempted to put disabled people and their families in control of the services and supports they needed, which was starting to address the power imbalance between the Needs Assessment and Service Co-ordination (NASC agencies) and disabled people. The announcement has clinically put the power balance back in favour of the NASC giving them the mandate to be gate-keepers and controllers of any supports available.

The decision to strip Whaikaha of Disability Support Services wasn’t even in the Independent Review!

Was it a purely political decision to dismantle what the former Government had done? I asked Mojo Mathers, former Green MP the first (and only) DEAF member of Parliament and now Disabled Persons Assembly CEO, what her take on this was. Mojo commented that, “The downsizing of Whaikaha with no consultation with disabled people has hit our community hard. Disabled people want more choice and control over their lives, not less.  Decades of underinvestment in disabled people has let to poorer outcomes for our health and wellbeing. This can be turned around. To do this, Government must engage properly with disabled people going forward.”

Disability supports have been grossly underfunded for decades. It isn’t the fault of Whaikaha, the issue is with the fundamental funding model of disability supports in NZ. We need a funding model more similar to ACC, as the disparity between ACC funded disability supports and Whaikaha (now MSD funded supports) is staggering. ACC offers gold plated services in comparison. Australia have had a National Disability Insurance Scheme for years, and while it has had its own issues, it is serving its disabled people well.

I contacted Huhana Hiki an old friend and Disability Rights Lawyer and asked her to give me a comment on last week’s announcement of changes to the disability sector. Here are her words:

“In a nutshell, we are back to the 1990’s. For how long? I don’t know but we can consider this is going to be us for two more years minimum and longer if we don’t demand change and stand up against the discriminatory, unethical inequitably designed decisions made around our lives. I know it’s hard, believe me I was meant to retire by now and I can’t. Why? Because unless we make a strong and collective stand against the abuse we are receiving from this coalition, then we won’t get change and we remain invisible. Sometimes we have to do the tough to be heard. 

I can’t do this alone, a few of us can’t do this without ALL of our community standing beside us, with us, All of us”

The Tai Tokerau EGL Leadership Group is organising a protest about these radical draconian changes to our Disability sector on the 11^th of October at 12.00 in the Civic Square outside the new WDC building on Rust Avenue. For more information contact tessa@tiaho.org.nz

FIGHT THE POWER!

Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception, a Whangarei based disability advocacy organisation.

A Different Light – 3 August 2024 – We all have a part to play in not reinforcing negative perceptions

It was only the other week I wrote about potty mouthed Hamilton City Councillor Andrew Bydder, who made ableist derogatory comments in an online submission to Waipā District Council. I pointed out how using word like “retarded” and “spastic” wasn’t just antiquated and puerile but toxic and bordered on hate speech.

A few days later, I’m reading about our Deputy Prime Minister Winson Peters using the phrase “retard comment” in parliament. It was in Question Time during which NZ First Leader Peters had to withdraw the use of the phrase. What was nearly as shocking was that in the video clip you could clearly hear a lot of the other politicians laughing at the comment!

There wasn’t much media coverage on this incident apart from a small article covering former Prime Minister Helen Clark who weighed in on Peters’ remarks on social media. Is this because journalists are getting use to this kind of language being bandied about? Is it because they are scared of Winnie? Or are they just indifferent to ableist language and don’t see it as a problem.

The landscape of New Zealand media, is evolving and somewhat fragile. The representation and inclusion of people with disabilities in the media can be seen as markers of social progress. Authentic portrayals of disabled individuals in TV shows, films, and advertising not only reflect a commitment to diversity but also plays a vital role in shaping public perceptions and fostering inclusivity.

Television shows like Shortland Street have made commendable efforts to include characters with disabilities, depicted by actors who share those experiences. This approach not only enhances the authenticity of the portrayal but also provides disabled actors with the opportunity to showcase their talents. Similarly, films such as Poppy (2021), which tells the story of a young woman with Down syndrome, played by actress Libby Hunsdale, highlight the potential for rich and meaningful narratives centred around disabled individuals. While these have been noteworthy strides, recent incidents such as Winston Peters’ derogatory use of the word “retarded” underscore the ongoing challenges and the ongoing need for greater sensitivity and awareness.

Using the term “retarded” in a derogatory manner not only perpetuates harmful stereotypes but also highlights the pervasive nature of ableist language in public discourse. Such language is not just offensive; it reinforces negative perceptions and undermines the dignity of people with disabilities. The media has a powerful role in countering such attitudes. By consistently portraying people with disabilities in a positive and accurate light, media can challenge societal prejudices and promote a more inclusive mindset.

I’m looking forward to the coverage of the 2024 Paralympics which will commence on the 28^th August. The word Paralympics doesn’t come from the word paraplegic, as many seem to assume,  but comes from the word ‘parallel’, meaning the Paralympics run parallel to the Olympics. Media coverage on the Paralympics have been improving each time the games come around with increasing authenticity. If the way in which disabled athletes and performers in the opening ceremony of the Olympics are anything to go by, I won’t be disappointed.

Jonny Wilkinson is the CEO of Tiaho Trust – Disability A Matter of Perception, a Whangarei based disability advocacy organisation