Access by Various artists

This Disability Pride Month I am reflecting on the complicated identity of disability for those of us with physical disabilities.

I am often “reminded” by those inside and outside the disability community that having a disability is only made difficult by the people around us, by ableism, by discrimination, by lack of accessibility. This can be a useful sentiment that highlights how our lives are so often made so much more difficult by others. For many of us, it is also a lie.

This Disability Pride Month, I would like to suggest that it’s ok to talk about our bodies and our lives with nuance and it’s ok for us to discuss just how difficult it can be to live in and with our disabled bodies. Our lives being hard doesn’t make them any less valuable. We can be proud of and celebrate our disabled bodies while acknowledging that, for some of us, the experiences we have as physically disabled people with disabled bodies can be downright horrific and sometimes terrifying.

In December, I missed out on Christmas entirely because I had diarrhoea. I know every one of you are thinking... Too Much Information. Bowel problems are a taboo subject and it’s unpleasant to think about. More than unpleasant is the 6+ months I’ve now had to live with this ailment. I still don’t know what’s causing it or how to fix it but I’m working on finding answers.

A reason for the delay in seeking more concentrated attention on this issue is that on January 4th of this year, I broke my femur. It’s a “non-union break”, meaning that the femur is completely broken through. I sort of collapsed slowly onto the floor as my wheelchair slid out from under me that night as I was reaching for something on my bed. I hauled myself back up into my wheelchair and went to bed, hoping I hadn’t hurt myself.

The following day I woke up and didn’t feel wonderful. By the time my cleaner arrived that morning, my temperature had started to raise and I got myself to hospital. I had sepsis, completely unrelated to my broken leg.

The symptoms of sepsis masked any indication of a broken leg and, for one reason or other, I went about 6 days in hospital without diagnosis. In the discharge lounge, after the antibiotics had done their thing, it was now up to me to convince the doctor who was overseeing my discharge that something was very wrong.

I was sent for x-rays and immediately readmitted, this time to the orthopaedic ward, for two months of “conservative management” of my very broken femur. It was supposed to be six weeks, but I got two more sepsis infections of increasing severity while I was in hospital, as well as a couple of pressure sores, both of which got infected and took months to heal, as well as several other infections. I also still had chronic diarrhoea.

By this time, I was in screaming pain and I needed a few different painkillers, including both long acting and quick release Oxycodone. Some months later, under the supervision of my doctor, I came off the painkillers that I had developed a debilitating and painful dependence on. The process of withdrawal was horrific.

I’ve had some bad years but this one has been by far the worst. I’ve really only given you the “highlights”. I don’t know how I’m still alive.

After all that, my femur hasn’t healed at all and I’m getting an above knee amputation. 

None of this would have happened to me without osteoporosis caused by paraplegia or without the circulatory issues, skin problems and neurogenic bladder and bowel I have that makes me so much more susceptible to infections and life threatening sepsis. It’s important for me to say this because our experiences, as people with physical disabilities, are so often an inconvenient truth. Our experiences as disabled people with bodies that can sometimes make life truly awful are kept quiet.

This Disability Pride Month I’m proud of myself and my family, especially my youngest sister who I sincerely owe my life to, for keeping me alive. My sister and I have always been close, but this year brought us so much closer. I literally couldn’t have done this without her. She has been the one constant that has made me hang in there for something better.

It might seem strange to say but I love my disabled body and I'm proud of it. We’ve been through a lot together.

In 1967 Owen Woodhouse proposed a principles-based comprehensive no fault compensation scheme. The principles were: 

• Community responsibility,
• Comprehensive entitlements,
• Complete rehabilitation,
• Real compensation,
• Administrative efficiency.

It was a world-leading vision but one which has never been fully implemented. The Accient Compensation Commission was established in 1973, but has only ever partially addressed the Woodhouse principles.

Previous Labour government ministers Geoffrey Palmer, Ruth Dyson and Iain Lees-Galloway left the work required too late in their terms for significant extensions to be implemented. Dyson and Lees-Galloway both said they doubted public support for change. But a large number of media articles shows public support is now building.

The ACC Act is long and complex, full of amendments, and susceptible to cutbacks which take years to patch up. For example, Nick Smith’s 2010 cuts to entitlements have still not been addressed.

In his 2018 Sir Owen Woodhouse memorial lecture, Sir Geoffrey Palmer (who started his career assisting Woodhouse) outlined what was still required to implement Woodhouse’s vision, and described a simple comprehensive universal system of disability and income support. 

The ‘window of policy opportunity’ is opening. This current government has started to tackle the big issues of education, health and welfare. A major reform of the health system was announced last week, although ‘disability’ has been parked for a few months as it requires more work.

Government policy now encourages ministries and ministers to work together. There is now the same Minister (Carmel Sepuloni) for ACC, Disability Issues and MSD, and the Minister of Health (Andrew Little) is a former ACC board member who has in the past supported extension/reform of the scheme. The ACC policy team in MBIE has been strengthened and the Finance minister has expressed an interest in expanding social insurance. 

The Christchurch terrorist attacks highlighted the inequity in the way those witnessing violence but not physically injured are not covered by ACC. The issues raised by the mosque terror attacks were covered in a recent interview on Radio NZ with Andrew Little and Susie Ferguson. (Incidentally Susie Ferguson chaired a disability election forum last year in which the topic of extending ACC to non-accident disability was strongly supported.)

Other examples of significant inequities include whether a person’s need for a wheelchair is because of a traumatic spinal cord injury (covered by ACC) or an illness or congenital condition (not covered by ACC and reliant on rationed/means tested support through Ministry of Health/ Work and Income). These disparities in support and income are currently lifelong and have a significant impact on individual’s health and wellbeing. There are also gender and ethnic disparities in coverage.

The 2020 Labour Party election manifesto included:

Labour will also work to return ACC to its original purpose of assisting all New Zealanders who have had an injury

This will involve:

Addressing the changes National made when last in office, which unfairly disadvantaged tens of thousands of disabled workers

Considering the range of conditions ACC covers and taking an evidence-based approach and updating the list of chronic illnesses caused through workplace exposure to harmful environments

As part of the welfare overhaul, Labour will examine inequities between support through ACC and the welfare and health system for disabled people and people with health conditions

We will also continue the business transformation of ACC to support a customer centric approach to engaging with clients, business customers, health providers and transforming ACC culture.

As various inequities are becoming newsworthy and politically challenging, the time is now politically palatable for an independent ‘Woodhouse Part 2’ Commission of Inquiry or a Royal Commission. This could also look at what new funding arrangements would be required. Sir Geoffrey Palmer is the perfect person to head it, or he should at least be consulted about who would be suitable.

We currently have a Royal Commission on Historic Abuse but it was only established after many years of lobbying politicians and advocacy by survivors of state care and their allies. The election of the Labour-led Government in 2017 presented a window of policy opportunity for its establishment. The time for an independent inquiry reviewing ACC with a view to recommending one equitable, sustainable and future-proofed universal system of disability and income support has now come. We must then be ready to have input into possible Terms of Reference to make the most of the opportunity.

An advocacy group ACC Futures is holding a forum in Wellington on 30 April looking at various ways to re-envisage ACC for the 21^st century. 

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.

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 70^th birthday, IHC.