Access by Various artists

6

The Day My Brain Stood Still

by Michelle Walmsley

I want to tell you about how things have been for me since I wrote on my experience as a disabled person during Covid-19. I’d like to but I can’t properly. This account might not be as lucid and linear and clear as the last. 

I was proud of what I wrote, not least because it wasn’t easy. I said everything I wanted to say at that time and I’m grateful that people read what I had to say. Thank you for reading, I really do appreciate it beyond what I can express here. Writing anything had never felt so important to me as it did in that moment, I think because I was so isolated and alone.

Things have been different. They were already different then. I remember now. 

One day I was scheduling my day to keep my mind off things; taking my dog out for two walks a day, eating well, lying in the bath, researching and writing for my thesis, listening to music and audiobooks. The next day, I felt broken and completely unable to function. I wasn’t able to hold a coherent thought in my head, I just knew I was terrified.

I wrote that 'Bubble Of One' piece in a brief moment of clarity weeks after that had happened. I say weeks. Maybe? Since that day I’ve mostly lost any coherent sense of time. 

I had to get it down and send it off in one effort. I knew there would be no going back to it. I had to concentrate hard and it took a bit of energy but it did flow out of me without having to force it at all. I enjoyed the process of writing even if the subject was dark and I was living it. 

I’ve always been able to protect myself from the thing I’m writing about, even if what I’m writing about is myself. I’m a vain person and I usually care about whether I’ve written well at least as much as what I’m actually saying. I think that helps. This time I feel different. I can’t write quite what I’d like to write. I hope what I want to say still comes across.

This is not so much to do with external needs this time. This is not even to do so much with disability, except peripherally. Not physical disability, anyway. I ran out of energy to look outward. My story now is about how having preexisting mental illnesses threw me into the worst mental health crisis I’ve had for nearly 20 years, during lockdown. 

I have Post Traumatic Stress Disorder (PTSD). I struggle with it every day in ways that I’m sure even those who are closest to me don’t know or understand. I won’t go into the trauma that caused my brain to break except to say that a person like me has to go through a lot of surgeries and medical procedures and the more you go through, the more potential there is for things to go wrong. 

Anxiety and depression are never too far away for me, though the latter has mercifully not struck me down for a long time with the same strength and violence it used to when I was in my teens and 20s. Anxiety can be crippling for me. In some ways it’s worse than the depression. Weirdly, I got some of my best grades at university when I was clinically depressed but still able to get out of bed. Anxiety is like an electric shock to the brain for me. I can’t think. I can’t read. I can’t write. I can’t even listen to music because the sensory overload is too much. I’m struggling to see the keyboard through my tears at that last sentence. 

I’m seeing a psychologist now and have been for a while thanks to videoconferencing technology. That happened by chance and I’m grateful. Well, chance and honesty. Access to mental health services can be difficult but I’m very honest about where I’m at so that if opportunities do come up for intervention it’s because I’ve been honest with the right people. As anyone knows who has tried to access a service of any kind, access to the right people is frustratingly often down to luck.

I’m starting to think more clearly and I’m beginning to feel like my thoughts are my own again even while my feelings are flooding my brain and my body to such a degree that I sometimes feel myself involuntarily twitching and writhing. My body doesn’t know what to do with this information overload, having only had one input to process for so long... terror.

If anything, I’m having more trouble sleeping than I did at the height of my anxiety, though I think I’m getting to bed earlier. I had sleep paralysis for the first time in a long time, recently, for a few nights running. That was cruel. Sleep has been my only escape, so to know I might start having these terrible nightmares somewhere between sleep and awake, to feel like I might die from them because I felt the breath being pressed out of me was … well, of a piece, I suppose. I haven’t had sleep paralysis again for a few nights, which is a huge relief. 

I’m starting to do better. The most telling sign of that is I want to go out and do things and see people and get back to my life. That life is going to look quite different in a way, at least for the time being. With no active Covid-19 cases and all cases recovered now in New Zealand, it feels like something of a new beginning for New Zealand and for myself, though we must remain vigilant and careful as we enter into this next phase of putting ourselves back together.

I can’t tell you how grateful I am to every person for helping to keep us all safe. Thank you. I wish us all good health.

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.