Access by Various artists

18

Bubble of One

by Michelle Walmsley

When you spend a lot of time on your own, as I do, you tend to notice things more, perhaps earlier. 

I think it was maybe early February when I started to feel quite concerned about a new virus from the same family as common colds but worse than influenza. I watched a documentary in February on the “Spanish Flu” and I learnt that we don’t know for sure where it originated. The reason it was coined Spanish Flu is because Spain was neutral in WWI and so they weren’t trying to hide the truth of their experience with this particularly virulent virus from other countries who might have used that information against them if Spain, too, had been at war. 

Spain reported honestly, through its own media, the Spanish experience with what would become a devastating pandemic, the likes of which the modern world had not seen. A false impression emerged that Spain was hit very much harder than other countries and was the epicentre of the virus. Neither of these things turned out to be true.

Now we have old and new media vying for our attention from around the world, as well as conservative and liberal outlets that are pumping out new information 24/7. We have think pieces attempting to find new angles and fresh takes, the quality of which varies dramatically. 

We are certainly not suffering from a lack of information this time. Media literacy has become one of the most important skills a person can possess right now, with the ability to acquire flour and make sourdough running a close second, it would seem. Vulnerable people, though, are particularly at risk from bad information or misinformation, and disabled people are often made more vulnerable because of a lack of equitable access to important and timely information. 

The amount of misleading and downright wrong information being spread throughout the world is disturbing and worrying. With some of this bad information being disseminated by old media, from radio and TV, to print journalism, media we are supposed to be able to trust especially in times of crisis, even the most media savvy of us can find it difficult to be properly discerning about what information and messages we take on.

I’ve been through a lot in my life but I’ve never been so terrified. 

I’ve struggled with an anxiety disorder all of my adult life. It probably began in my teenage years. I was always an anxious child but that anxiety began to spiral out of control in my teens and twenties and I realised that it was tied to medical trauma I’ve experienced throughout my life. This trauma is profound and it informs much of how I live my life. When I decided to write a PhD on disability history in New Zealand, one of the first things I had to do was figure out how I would research disability without it doing psychological harm.

I decided not to directly focus on the medical experiences of people with disabilities in my research. Until now, I had only theorised the damage focusing on a medical past through a disability lens might do to my own fragile psyche. 

Now I know exactly what re-traumatising can do to a person. The panic attacks began well before we went into lockdown. In the week before lockdown as I visited my doctor for any medicines I might need while in isolation, panic attacks turned into panic all of the time and intolerable flashbacks.

I didn’t have the means or the freezer space to stockpile groceries and other essentials as others were. We were told to shop normally. I was trying and failing due to many essential items already becoming scarce as those who could afford to hoarded away everything from toilet paper, soap, hand sanitiser, and hygiene wipes to bread, flour, tinned foods and eggs for themselves. I always thought I was reasonably well prepared for disasters and emergency situations. It turns out the few extra tins of food I’d set aside were basically pointless in the absence of more comprehensive planning. 

It never occurred to me that in my lifetime reliable access to food and essential items would be something I might become anxious about. Until Countdown supermarket implemented a new scheme that would prioritise delivery for elderly, disabled and vulnerable people, I spent many of my already impossibly difficult waking hours trying to secure a strategy for reliable grocery delivery. I explored every avenue I could think of but until Countdown supermarket delivery became more of a reliable option, I was faced with having to enlist the help of people outside of my “bubble of one”. I’m lucky it didn’t come to that. I’m lucky it was even an option for me to get help from others should I need it. It didn’t feel very lucky at the time. 

Retaining the independence we have is so important for disabled people and for others who might be considered vulnerable. It’s important we maintain some control of our lives. It’s imperative the systems we have in place in situations like this don’t become suddenly precarious if the people we rely on become unavailable for whatever reason, say a virus, for example. The anxiety around food security alone has been enough to raise my heart rate to uncomfortable levels. 

It’s very difficult to plan for a hypothetical situation when you don’t know what you’re going to need. I’ve learnt more in the past few weeks about emergency preparedness than I probably would have learnt in a lifetime without Covid-19. 

There, I said it. Covid-19. 

2019 was a rubbish year for me. It started with a hospital stay in January, a routine checkup with specialists at Burwood Hospital to see if there were any adjustments or recommendations that might be made to improve my quality of life. That set off PTSD symptoms which I hadn’t had so severely since I needed specialist psychological counselling to get me through my leg amputation in 2014. Sepsis in March rounded out the first quarter of what would prove to be a pretty awful year for me and I ended up severely depressed and unwell. I’ve joked darkly that of course this pandemic virus would be called Covid-19. That year just seems to haunt me.

In the days and weeks since lockdown, I’ve been doing it tough. I had been paying close attention from the beginning to the fact that this thing, this virus, it attacks vulnerable people particularly hard. It kills vulnerable people. Stories began to flow out of countries with alarming speed and abundance about how places without enough resources, especially ICU beds and respirators, were prioritising otherwise healthy people for treatment. People with co-morbidities or other vulnerabilities, such as certain conditions and disabilities, would be sacrificed so that those people who had a better chance of recovery would get access to treatment. 

Rest homes throughout the world recorded outbreaks that under-resourced staff were struggling to contain and manage, with disturbingly high levels of fatalities. Those of us who are vulnerable to this thing, this Covid-19, couldn’t help but feel we would struggle to survive if our country fell to the same fate as others where lifesaving healthcare and medicines might have to be brutally rationed. 

I opened my back door this morning to a praying mantis, quite dead, dangling from a single silken thread of a spider. Life and death can be cruel. The brutality of our decisions can have devastating consequences for others and even ourselves. 

While people in power wait for advice from further and further up the bureaucratic chain of command on the true benefits of preventative measures like masks and other PPE (personal protection equipment), those of us who need help from others in our own homes are dealing with the consequences of PPE gear not being made available to care workers so that none of us are able to feel truly safe in our own homes right now. 

As a “bubble of one”, I had to make a decision early on whether I would cross my fingers and hope for the best or try to mitigate risk as best I could. I have chosen to cut the help I get right back. Even still, the once a week that my carer now comes to me is a time that fills me with panic. I can’t help but feel a disconnect between a strategy that is at once trying to protect our nation’s most vulnerable people from Covid-19 while at the same time is moving so slowly to provide what anyone might call conservative measures of protection.

I knew what was coming. With any luck we were getting ahead of this thing, this Covid-19, so that our health system would cope just fine and lives like mine wouldn’t have to be sacrificed. We would need to be vigilant and stay the course. We would need to prioritise science right now. I knew what was coming …

Death by thinkpiece. As I expected, people with demographics on their side have started to wonder if we perhaps have been overreacting. If perhaps we should open our country back up and get back to normal because the sacrifice isn’t worth it. Vulnerable people could stay at home and everyone else could get back to work. Mainly it would be vulnerable people who would die and they were going to die anyway. 

It’s true, vulnerable people will die anyway. We all will, eventually.

I’m vulnerable. I’m not dying right now, though. I have no idea how long I have but I’m hoping it’s a while. Despite my poor anxious and traumatised brain telling me I want to die every day for weeks when all of this became too real and the anxiety was too much to bear, I want to live. 

Not all of the vulnerable people who have died, are dying, will die of this thing, this Covid-19, would have died in the coming months or years anyway. Many of us are vulnerable but very much full of life. I want New Zealand and the world to fight for me and people like me. 

Call me selfish but I’m not ready to die yet and it terrifies me the ease with which people are prepared to sacrifice my life and the lives of people like me, vulnerable people, for the sake of an economy that is going to struggle whatever we do.

Even in my darkest hours, I do not want to die of Covid-19.

9

Thank you to those stroppy parents who founded the IHC 70 years ago

by Hilary Stace

On 25 October 1949, 22 parents met in Wellington. A notice had been placed in the Evening Post the previous day calling for ‘parents and guardians of backward children in the Wellington district… to attend a meeting … to consider the formation of a parents’ association’. 

The meeting elected Hal Anyon as interim president and his wife Margaret Anyon as secretary/treasurer, plus two committee members. At the following meeting, on 23 November, 50 people formed the Intellectually Handicapped Children’s Parents’ Association. Within three years there were a thousand members in several branches around New Zealand. In 1994, following several name changes, the large nationwide organisation became the IHC.

Those founding parents were brave and stroppy. They had to be. In 1949 there was widespread discrimination against people with what was then called intellectual or mental handicap. This situation was a legacy of decades of eugenic assumptions in which disabled people, particularly those with intellectual or learning disability, were considered defective and likely also deviant. Widespread assumptions of ‘tainted heredity’ and shame meant parents were strongly advised to hide their disabled children away from families and communities in institutions and forget about them. Many mothers were powerless to fight the removal of their child in the face of state authorities.

But by 1949 many parents of children with intellectual disability had had enough of hiding their sometimes-adult children away. Margaret and Harold Anyon wanted more for their teenage son Keith who had Down Syndrome. Wellington parents, including the Anyons, lobbied for a school. The local MP, Peter Fraser, helped them find a site in Oriental Bay. But in November 1949 there was a general election and the first National Government was voted in with a new Minister of Education. Meanwhile some of the residents of Oriental Parade had started a petition against the school. The new Minister of Education refused permission for the school and the parents had to start again. 

Eventually, with Peter Fraser’s help, they found temporary accommodation under the stand at the Basin Reserve, and eventually found a site at Coromandel Street in Newtown, where they built a school, an occupation centre and later a sheltered workshop. But nothing happened without considerable lobbying and hard work, mainly by the families of these disabled children. They wanted education for their children, some good respite facilities, occupations and residential care for adults. 

They were also astute lobbyists. The new National Party Minister of Women and Children in 1950, Hilda Ross, was also the only woman Cabinet minister. The IHC women invited her on a tour around Wellington and they visited about 20 mothers and children at home to see what the reality of life with their disabled children was like without government or community support. She became a strong ally although, unfortunately, largely ineffective when it mattered in the male-dominated political world.

The IHC parents petitioned the government for an inquiry into the lack of support for their children. They expected the findings would be in favour of schools and small community homes which was then international best practice from the World Health Organisation. The government appointed a Consultative Committee under the chair of the Vice Chancellor of Otago University and former head of the Medical School, Dr Robert Aitken. 

Unfortunately, the 1953 report of the committee, which became known as the Aitken report, recommended that the current institutions be expanded so that disabled and mentally ill people (including children from five years old) would be housed in large ‘mental deficiency colonies’ containing several hundred people. The committee not only rejected parental requests for community support but also reinforced the use of words and concepts such as ‘idiots’ ‘imbeciles’ and ‘feeble-minded’ that the parents had objected to. 

A few years later in 1958 under a different government, another committee under another doctor, Sir Charles Burns, criticised the Aitken report’s enthusiasm for large custodial institutions, recommending smaller residences and even family care. But it took many years for the momentum to slow and these ideas to be implemented. The last psychopaedic institution, the Kimberley Centre, south of Levin, only closed in 2006. At its height in the early 1970s it held about 800 residents.

The work of those involved with voluntary organisations such as those in the disability sector can be time consuming and intense. The records of those early days of the IHC are now part of a large collection of IHC records in the Alexander Turnbull Library. The papers of are full of passion, argument and advocacy; how best to get education, employment and community support for their children and others like them. IHC members fell out with each other, and there were battles between those wanting the organisation to remain parent-led and those wanting to let the clinicians and professionals in. But their work didn’t stop.

Those of us who no longer have institutionalisation recommended for our disabled children owe those earlier parents great thanks. Happy 70th birthday, IHC.

17

Reviewing Funded Family Care and repealing the outrage of part 4A of the Public Health and Disability Amendment Act

by Hilary Stace

On Sunday July 7, Prime Minister Jacinda Ardern and Associate Health Minister Julie Anne Genter announced their intention to review the Ministry of Health’s Funded Family Care policy and repeal Part 4Aof the 2000 NZ Public Health and Disability Act. 

These are festering injustices from the last government that have angered many in the disability community since 2013. But the lack of detail of exactly how this will happen – as such policies often have tentacles of discriminatory and person-diminishing implementation – saw cynicism overcome joy in subsequent reporting. 

Some historical context might help. Traditionally, caring work has been considered ‘natural’ support, the stuff that (mainly) women do without expecting payment. But early this century some carers of disabled family members took legal challenges against this assumption. Non-related carers could already be paid, and even relations who lived at another address could claim payment in some circumstances. But family members at the same address, those likely to know the disabled person best, were excluded. The courts heard some opposition from some disability advocates who suggested paying family carers risked exploitation and abuse, but mostly the cases focused on parents who wanted to be paid to care for their disabled family member, just as non-family service providers would. 

In 2008 the Human Rights Review Tribunal agreed and the case (known as Health v Atkinson) proceeded to the High Court. The families won but the government, through the Ministry of Health, appealed. Eventually the families won in the highest court, the Court of the Appeal. 

Under the Minister of Health at the time, Tony Ryall, a grudging response severely limiting payments was developed. A new policy was enabled by an amendment to Part 4A of the 2000 Public Health and Disability Act which snuck through under urgency in the hours following the 2013 Budget. The Government did not have a majority but they held the proxy votes of the Māori Party who were apparently not in the House at the time. Not only did this legislation confirm that disability care was an unpaid family responsibility, this legislation banned any appeals about the policy under the Bill of Rights Act or to the Human Rights Commission.

As the details were revealed many in the disability sector were incensed, as well as some astute MPs such as the Green’s Catherine Delahunty. Few others noticed. But Otago legal expert Andrew Geddis did. He wrote about this legal outrage on the Pundit website – and in doing so managed that rare feat of a flipping a disability issue into the mainstream.

The vindictive intention soon became obvious. Under the new Funded Family Care policy the carers of severely disabled adults (aged from 18-65 only), but not spouses, could apply to be assessed, through demeaning processes, for a maximum of 40 hours per week for the minimum wage. To make it extra complex, the disabled person had to take on the responsibilities of employment for their family carer. Unsurprisingly, only a few families ever bothered negotiating the eligibility criteria.

Rosemary McDonald, who had been part of the court case and wanted funding to care for her disabled spouse, laid out the considerable complexities of the legal cases and expressed her contempt for the ongoing injustice about Funded Family Care here and here on Access. She featured with other families promised justice in September 2018. A Ministry of Health commissioned report in December that year by Sapere revealed the many flaws of the policy.

Resentment about this policy continued over the years even as a related case was won. Repeal was part of the 2017 election manifestos of the Labour and Green Parties. But 20 months on, this attack on disability rights seemed to have dropped off the agenda. Until now. 

With this history, it is not surprising that trust is low and the response less than jubilant and grateful. Relationship building requires more than press releases. This Government looks kinder and more compassionate than the last one, but how does that get operationalised through policy settings and onto the front line?

It would have been helpful if that Sunday’s press release also had some answers for our many questions. Will the same compassion be applied to the assessment processes, which for some take a very narrow view of eligibility? It's great that the hourly rate is going up, but will there be an extension to the current maximum of 40 hours considering that caring responsibilities can be 24/7? How will ‘disability’ be defined? Will you be able to claim if you also get services? Or Individualised Funding? What if the disabled person or carer is over 65? What will the effect be on any other benefits? What about respite? 

Sadly, abuse of disabled people by family members is not rare, so how will it be monitored? Setting up a monitoring group led by disabled people themselves would be a good start.

Hopefully the select committee will provide an opportunity for submissions about what real improvement could look like. Along with the Ministry of Social Development’s current consultation on the Carers' Strategyand in the new context of ‘wellbeing’ we could do something really innovative about respecting modern caring as well as disability rights. It could also rebuild trust.

6

Jim's Truth

by Russell Brown

I've had a bit to say of late about YouTube, its algorithms and the escalating allure of certain facile "creators" to young men. I worry about this stuff. But I think it's also important to acknowledge that the alt-lite and alt-right grifters exist within a much broader and more diverse culture.

My son James Rae Brown has grown up watching and listening to the first-person communicators of YouTube. They are basically his television (but not his movies – actual movies, he goes to several times a week). And in them, from ranty movie geeks to cultural commentators and neurodiversity advocates, he has found community and identity.

Since 2011, he has also beeen a YouTube creator himself. He has 3300 subscribers and is closing in on two million views, although more than half of that total is his wildly popular edits of the Persona 4 animated series. He has posted movie reviews and various other ruminations, all in vlog format. But he's never made anything as important as A Trip to Beach City.

It's the story of how, as a young autistic man, he struggled with disappointment, anxiety and depression – and how a strange cartoon series called Steven Universe really helped him. Of the whole series my favourite is episode 9, where Jim does a deep textual dive into Steven Universe and marvels at how a cartoon story about "magical space lesbians" could have resonated this way with him.

"Come at me, homophobes!" he cracks, and it just seems so distant from the shitty, narrow, resentful "advice" being churned out to young men by the likes of Jordan Peterson.

But that's not the best thing. The best thing is that Jim has grown up with other people telling his story. We made the decision as a family to be open about ourselves and our two ASD sons in the hope that it might help others in the same position. Jim took that on board, and it was the reason he put up with a fair bit of stress in allowing the Attitude documentary Jimmy Wants a Job to be made about him.

And I know, because they told me, that it did help other families. I cried a little when a dad I know told me about sitting down with his own ASD son to watch the documentary, and his son saying "This is the first time I've ever seen myself on TV."

But this is different. This is my son telling his own, unmediated truth, in a way he might not have been able to even a couple of years ago. He does it with skill, frankness and not a little humour. I'm really proud of him.

4

You just need a sense of humour

by Hilary Stace

“You just need a sense of humour”. I heard this patronising and unhelpful advice from a panellist at an Autism New Zealand Conference many years ago. What about access to education and services, understanding, financial and other support?

These words came back to me when I received the following email from my friend Helen* earlier this year. Helen’s adult autistic daughter Alex has high and complex needs and various support workers come in and out of their lives. Helen has a painfully damaged back from years of hard physical caring work. Their old family friend Ben has a new rescue beagle puppy called Happy. Somehow Helen retains a wicked sense of humour. I have her permission to share this summer story.

–––

The support workers used the old Mitsubishi for a few days when they first came back after the Christmas holidays. They went to visit someone they knew at a farm and showed Alex all the animals.

The farm owner very kindly gave them a tray of 20 fresh free range eggs. In the old Mitzi, as it’s a station wagon, there’s nowhere Alex can’t reach. So the eggs went under the car seat. They forgot about them.

The heatwave was due so they wanted to use my little Honda for its air conditioning. I had hurt my back and couldn’t drive so it wasn’t a big deal.

In the meantime those 20 eggs sat under the car seat in a locked car parked in the full sun for several weeks until we found them last Monday.

We decided they would be well and truly decomposing and the best thing to do, was to bury them deep into the compost heap.

It was the deepest hole ever dug on my section. Even old black and white puss didn’t get such a deep hole when he died.

Tonight ... God comes calling at the front door. Three Mormons. Poor Ben couldn’t get rid of them and called me.

With great difficulty, I was trying to change the sheets on my bed. Bed making and sore backs aren’t good companions. I’d got the clean top and bottom sheets on ... the new pillowcases ... and was half way through getting the duvet on.

Ben calls me in despair ... to get rid of the godly trio. I left my bedroom door open, my biggest mistake ever.

Meanwhile, Happy the rescued beagle cross pound pup had dug up all 20 of the rotten eggs. He got them out, breaking the lot. He rolled in them ... he was in dog muck heaven.

THEN ... he snuck inside through the back door, saw my bedroom door wide open and a clean bed. Happy loves beds. Happy is the laziest young pup I have ever known.

In his little peanut brain, he must have thought all his dreams had come true. Rotten eggs to roll in and my best linen and a bed just waiting for him.

You have no idea of the smell and mess when I got rid of the God botherers. I could smell it from the front door.

The linen all came off ... the dog got a bath ... and Alex drank the remaining approximately 500 mls of dog shampoo.

I had to ring the Poisons Centre. Ben had to take Alex to A&E for a chest X-ray, as my back won’t allow me too.

I’m left at home with the Mucky Happy. My poor timid Bo, our black labrador, senses the atmosphere isn’t too great. He’s currently hiding.

Meanwhile the cause of all the trouble is damp and fast asleep, lying across the entire sofa.

The end.

*Names changed.