Access by Various artists

In the 1960s a New Zealand woman gave birth to a baby boy with Down Syndrome. There was no celebration at the birth and the family GP told the parents that the best thing would be to put the baby into an institution where he would be looked after, to forget about him, and try for a "normal" baby as soon as possible. He warned that the family would be shamed by the baby as it indicated faulty genes and other family members might not find partners if there was a risk of producing a "mentally defective" child. That was the insidious conspiracy theory of eugenics.

The mother loved her son and wanted to keep him. But one day the family doctor and a staff member from an institution came to take the baby. The mother was instructed not to visit for at least two years to help her forget about him. Of course she never did, but visiting him was difficult and several years later she heard that he had died. 

That child was one of thousands of children coerced from their families and communities and sent to one of several psychopaedic or psychiatric institutions across New Zealand in the middle decades of the 20th century. There were so many that the profession of specialist psychopaedic nurse (nurses for children with intellectual or learning disability or other impairments in the institutions) was a New Zealand invention in the 1960s. 

Survivor stories such as in Robert Martin’s 2014 biography, Becoming a Person recall various types of physical, emotional, sexual, medical, spiritual, cultural abuse and neglect. The 2017 report for the Human Rights Commission called Institutions are places of abuse: the experiences of disabled children and adults in State carewidens the picture. Although there were some kind staff, clothing, housing and routines were communal and individual identities denied. Children were sometimes shifted around institutions or in or out of foster care without understanding why. 

Documentary-maker Gerard Smyth talked to several former residents of Templeton Hospital for his 2004 documentary, Out of Sight out of Mind who were trying to make sense of their decades of institutionalisation. Their crime was having a disability or learning impairment or just being poor. Some were bussed there as pre-schoolers and didn’t leave until they were in their 60s. 

When the institutions started to empty – the last was Kimberley in 2004 –some families discovered a new or missing member. Other survivors shifted into residential care in the community without family or identity apart from sparse notes in their institutional files.

This historic abuse by the State and its agencies affected thousands of individuals and families. There are several categories of victims: the disabled children; the mothers and fathers; family members who were denied a sibling; clinicians, staff and policy people who believed they were doing their best (or just following rules); a New Zealand which let it happen.

A Royal Commission was the last of the 100 day promises of the new Government. Ten months later the Royal Commission and its secretariat  is established and preparing to start hearings in the New Year. My initial impression is that, although full of good will, it is heavy on legal representation and light on lived experience of disability or understanding of the toxicity of eugenics, or its lighter prejudice ableism. However, it is a victory to see former Disability Rights Commissioner (and sometime Access author) Paul Gibson as one of the Commissioners 

Will that elderly mother of that stolen child know to register with the Commission and get a chance to be heard? I’m not sure how the old lost men in their group homes will find their way to the flash offices in Lambton Quay to tell their stories. But I hope they do.

Dr Margaret Cruickshank, New Zealand’s first registered woman doctor, has saintly status in our family.

She died a century ago on 28 November 1918 in the influenza epidemic. Doctors were in short supply during the war and she had worked around the clock helping influenza victims until it took her too.

Born in 1873, at 20 she was too young to vote in the first women’s suffrage election on 28 November 1893 (another anniversary to mark this month) when the voting age was 21. After becoming the second New Zealand woman to complete medical school, Margaret joined a practice in the Canterbury town of Waimate.

My grandparents asked her to be the godmother to their second daughter, my mother, born there in 1917. But 18 months later she died helping others and in 1923 the citizens of Waimate erected a statue to honour her. I have a letter she wrote about her Christian faith and how it could be tested at times. She never married.

I have a tenuous connection to another flu story. In early November 1918 the SS Talune transported the flu from Auckland to Samoa, Fiji and Tonga – with disastrous effects. Even though there was sickness on board only American Samoa refused the ship entry.

In Samoa, it collected a young family on their way to live in Wellington. The father was a member of the NZ Expeditionary Force which in 1914 had claimed Western Samoa for New Zealand from Germany; the mother was a local woman of Samoan, Tongan and German heritage. She was pregnant with her second child and her baby daughter was 14 months old. What a terrible trip it must have been as most on board got sick including the crew and the father.

By the time the family settled in Wellington most of the mother’s family had died along with a significant proportion of the Samoan population. Grief and anger towards New Zealand and its neglectful governance fostered the growth of the Mau independence movement and led to the 1929 Black Saturday deaths. In 2002 Prime Minister Helen Clark apologised to Samoa.

Wellington was badly affected in what historian Geoffrey Rice calls Black November. Deaths were caused by pneumonia and cynanosis (lack of oxygen) which turned victims blue and after death darkened sometimes to black. Profuse bleeding was common. Bodies quickly decomposed requiring hasty burial.

In Wellington’s Karori Cemetery there are about 660 identified flu deaths in November and December 1918 and many more died throughout the Wellington region. At its height, dozens of people died each day. It is estimated up to 50% of the population could have been infected although most survived and many had only mild symptoms. Altogether, about 9000 people died in New Zealand in only eight weeks, compared to 18,000 deaths of New Zealanders in 4 years of war.

Future Prime Minister Peter Fraser was elected in a byelection in Wellington Central on October 3, 1918. Along with several of his Labour colleagues he had recently spent time in jail for opposing conscription for the capitalist war. Through his union networks he began to hear about illness on the returning troop ships that was much worse than the regular annual influenza.

Prime Minister Massey and his Deputy Ward returned from Britain via San Francisco on the Niagaraon 12 October and although there were sick people on board the ship was not quarantined. It is now thought that the more virulent flu strain was already here and travelling around the country’s rail networks with returning troops.

But it took the conservative government several precious weeks to take it seriously. Flu was not considered a notifiable disease until early November and no limits were placed on the Armistice celebrations, which helped intensify its spread. However, soon the city streets were empty as shops and offices closed, people refrained from social contact and sickness took over.

Politics played a role in Wellington’s response. Mayor John Luke was also the Government MP for Wellington North. Peter Fraser’s Labour colleague Harry Holland had recently stood against him for the seat. There was likely some conflict between Government and opposition. As a member of the Government, Luke had to accept the cautious response from his Minister of Health. Fraser was an activist new MP in an electorate which included severe areas of deprivation such as Te Aro flat with poor quality crowded housing, poverty and rapidly spreading illness. He wanted to get going.

Committees including the Mayor and a grid system for the city with makeshift hospitals and support systems were soon established. Peter Fraser put his personal phone number in the papers for anyone to ring who needed help. He and his volunteers went door to door bringing food, helping with cleaning or child care (as many parents were ill or died) and even carrying out bodies. Medications were expensive, so Fraser arranged for people to get what they needed with the bill sent to the Government. Later he persuaded the Government to bring in a pension for flu widows similar to the financial support war widows received.

During the epidemic both Holland and Fraser, from the left of the young Labour Party, caught the flu but recovered, while the more conservative leader of the Labour Party and MP for Wellington South, Alfred Hindmarsh, died. The resulting Labour Party was more comfortably socialist. Fraser was deeply affected by his experiences, but it took 20 years before a newly elected Labour government could change laws to improve housing, health and welfare. 

Where did this virulent flu come from? The latest thinking is that this new strain evolved in Kansas early in 1918 and spread to Britain and Europe with the US troops going to war. Servicemen then took it home to their own countries at the end of the war.

It was unusual in that November marked the height of the epidemic in both northern and southern hemispheres, when the regular New Zealand flu season follows six months behind the European winter. Another unusual aspect was that younger adults were most likely to get sick and die rather than the children and elderly who were most at risk from epidemics – the average death was a male aged 28.

Māori and other indigenous populations were particularly badly affected, with the Māori death rate much higher than non-Māori. Australia was less affected than New Zealand as more quarantine measures were implemented against arriving ships.

Understanding of illness and infection developed during the epidemic. The general theory until then was that flu came from ‘miasma’ or fumes from sewage or objects, rather than from other people. With few medications available, hydration, cooling through sponging or aspirin (if available), isolation and fresh air became the main interventions. Zinc spraying was a popular but probably ineffective preventative. Treatment required intensive nursing in crowded makeshift hospitals and not surprisingly many front line workers died. The work of  volunteers was vital. 

Margaret Cruickshank’s statue is one of very few memorials to those who worked or died in the influenza epidemic of a century ago, while WW1 memorials are numerous. I hear there is a plan for a plaque at Wellington’s Pukeahu National War Memorial Park naming the dead. I hope so. Perhaps a more significant way to honour those who died is to be well prepared to rebuff the next pandemic. 

Our statistics for the employment of disabled people are terrible. Disabled people are three times less likely to have paid work than non-disabled people, have fewer paid hours and earn less. Forty three percent of young disabled adults under 25 are not in employment, education or training. 

Lack of employment for disabled people is a complex problem. Many  have not had the education and training opportunities available to others. Employers and managers often do not understand issues around specific impairments or how to mitigate them. Few are prepared to have a go at mentoring a disabled person even though they are likely to become one of their most loyal workers. Then there is the underlying prejudice left over from decades of eugenic public policy which regarded and feared disability and disabled people as dangerous and shameful. 

Getting a job seems to come down to intangible factors such as parental networks or just luck. Sustainable employment is even more elusive.

In her speech at the Labour Party conference Jacinda Ardern revealed that people write to her on almost every topic and she shares many of the letters with her Caucus and Cabinet. So, as she is the most powerful person in New Zealand, I wrote to her about the lack of employment opportunities for disabled people.

I asked her to ask her Cabinet ministers to take a lead, such as by instructing their heads of departments to make an effort to employ workers with disabilities. They could start close to home - Parliamentary Services must have numerous appropriate job opportunities and could model an inclusive approach.

In addition, many ministers have direct influence on disability employment opportunities. For example:

• The Minister of Employment’s ‘Mana in Mahi’ programme could be extended for young people with impairments.

• The State Sector Act review and its stated intention to have more inclusion and diversity (which could incorporate disability quotas), and extending the Mainstream [Supported] Employment Programme for government agencies are issues for the Minister of State Services
• Disability employment training is an issue for the Minister of Education
• Lack of human rights and obligations for disability employment under Article 27 of the UN Convention on the Rights of Persons with Disabilities should concern the Minister of Justice.
• The Minister of Employment Relations regulates Minimum Wage Exemptions (a leftover from the era of sheltered workshops by which disabled workers are paid less – sometimes a lot less - than the minimum wage). While they remain considered not worthy of the minimum wage, regular employment will be elusive.
• The Minister of Finance wants to incorporate ‘wellbeing’, of which employment is an indicator, into GDP.

The problem is that if something has the word ‘disability’ in it, it becomes niche. It becomes a problem for disabled people and the disability sector to solve, and it sometimes seems that no one else cares. We have a great Minister for Disability Issues in Carmel Sepuloni, but lack of employment for disabled people cannot be solved by disabled people or by a minister for disability issues.

The social model of disability sees a distinction between disability and impairment. People have their individual impairments or chronic conditions but disability is a political process of oppression. I wrote to Jacinda to see if she would ask her government ministers to remove some of those disabling political barriers.

There are helpful people in Jacinda’s office and within a couple of days I got a letter: 

“You raise issues around disabled adults and the problems they have accessing employment, education and/or training, and suggest ways in which the Government could address this. … I’ve passed your email to the Minister of Social Development, Hon Carmel Sepuloni, as this is something which falls into her area of responsibility.”

So it’s back to niche.

Now I might misunderstand the processes that go on high up and it could be that there is some process whereby the Minister for Disability Issues asks her Cabinet colleagues to help with big urgent issues like the lack of paid jobs for disabled people, and they take the request seriously. 

We will see.

What do you do when you’re not at all sure how to be ok anymore? The well known, well-publicised advice is to talk to someone, which is excellent advice and a great start. What if you feel like your life is a mess and you’re having a terrible time and you don’t know what to do?

Full disclosure: This has been me for a while now. On top of that, what if you have disabilities that can affect your quality of life in a profoundly negative way unless you really have your life sorted, but those same disabilities can also prevent or make it difficult for you to ‘sort your life out’, whatever that means? Also me. 

I don’t know how to be ok right now. I’m tenacious, I know that much about myself. I don’t give up without a fight. There are loads of us out there, disabled or not, who go through stages where they are not ok and they don’t know how to be ok in that moment. I know this because I’ve been on the listening end of such conversations with all sorts of people. It’s a privilege to be confided in. I find it a lot easier than reaching out and hoping people will listen, especially when you don’t expect they know any more than you do about how to make things better for yourself. 

I don’t know what the answer is to this overwhelming feeling of life not meeting my own expectations, which is some but not all of what I’m feeling. I have a hunch it might lie in my interactions with others. That’s where I’m placing my energy right now. I’m talking to people about how I’m feeling and I’m working on plans to surround myself with more people. 

I’m pretty new at this ‘reaching out’ thing. I’ve always done what I needed to do for self-preservation but during these times of undefined and nebulous struggle, I’ve tended to keep to myself. I don’t like to worry people or bring people down and that idea at the back of my head of being a burden, brought on through ableist conditioning, tends to rear its ugly head, too.

Talking to people about what’s going on for me feels raw and it feels vulnerable and it doesn’t always go brilliantly but it’s much better than shutting up about it. Just the experience of talking to people has reminded me that I do have people in my life who I can talk to. That has already been helpful.

I should make it clear that I am not depressed. I’ve had a lot of experience with depression and this is not that, for which I’m grateful. I know that change in myself and in my circumstances will help and I know from past experiences that while it might feel like everything is terrible, it almost certainly won’t take much to make improvements that will affect my quality of life for the better. I also know I’m going to need some help, which is never easy to ask for, especially when I’m not exactly certain of the shape that help needs to take. It’ll probably take some trial and error.

Disability can be a profoundly isolating experience. I know I shouldn’t compare myself to others and for the most part I don’t, but I can’t sit here and say it’s fine that my life trajectory cannot measure up in any objective way to that of my peers and that it’s ok that I’m struggling so much to live the life I want for myself. I feel lonely, not just in a practical sense because I don’t have enough people in my life, but also because I find it difficult to talk to people about the things that are bothering me who don’t share my experiences and who don’t live the kind of life I live. 

I guess I find the isolation of disabled people, including myself, unacceptable because it is fixable. Our society is still not really equipped to provide the opportunities that many disabled people need to have the baseline quality of life everyone should have the right to expect. Many of us have to fight hard for a good life and in my case it only takes a few things to go a bit wrong to feel like I’m really in an uphill battle that I’m not winning.

I’m going to try to get more support in place so that I have more of a safety net and so that I can work on enriching my life without risking what is already precarious health; not only a tricky balance, it’s sometimes just not an option. I’ve heard many stories of people who were struggling anyway who had their support taken away or reduced. I’m lucky that this hasn’t happened to me, yet. I’m not completely confident though that I’ll get what I need. I suppose I’ll just have to wait and see and come up with another plan if that doesn’t work out.

Right now I’m in the middle of a two-month break from my PhD thesis on medical grounds. Nothing serious; a couple of things went wrong in my life in fairly quick succession though, culminating in a painful bout of shingles with the complication of post-herpetic neuralgia (chronic nerve pain) thrown in for fun. When I can get back to it, researching for my PhD will hopefully, at least at times, be a connective and enriching experience. Even though I’m working on it extramurally while I try and find an accessible house in Wellington, I’ve actually already met people who I feel very grateful to have made a connection with. 

I’m researching disability identity and I will be conducting interviews with disabled people as part of that research. I’m looking forward to that. I need things to look forward to. In the meantime, I’ll plug away at trying to make my life bigger and better in small ways that I hope will add up to something good.

I need a holiday from myself. I think maybe we all feel like we want to escape ourselves, our bodies, our lives sometimes. Whatever happens, there will be changes and you know what they say; change is as good as a holiday.

‘Special Needs Kids’. I’ve always hated those words.

Yet many parents of children who have needs that would not otherwise be provided for by any of our government-run systems have become accustomed to using this language and see it as essential in the framing of their children’s needs, so that they might get access to important funding. I have sympathy for this approach, from the perspective of people trying to access limited funding for their children – but how we talk about ourselves and others in relational terms matters a great deal.

The articles and the comments that follow articles about such subjects have had me so down about the state of things for people with disabilities, including myself, that I haven’t been able to write this until now, many weeks after I was approached to write something. It’s really got to me and not for the first time.

When we talk about ‘special needs kids’ it becomes obvious when you read the comments on any article highlighting issues around government support and funding for disabled people that this framing is having a continuing detrimental effect on how some non-disabled people view disabled people. They frame the needs of disabled people against their own, which are seen as a priority.

I haven't picked up on a consensus, but there are enough people who have commented that we should sort out the needs of ‘normal’ people before we look to those with ‘special needs’ that it makes me want to cry. The language that they use tells me they see disabled people as abnormal, with everything that label suggests. It’s a useful demonstration that we must be careful with rhetoric meant to serve a particular purpose that it isn’t used against us. We all have needs. Needs are needs, they are not special.

I’m not going to link to or reference a specific article here. My gripe is not with one journalist or article, or the comments on one article for that matter. My problem is with how public discourse around disability frames us in terms of our economic worth. 

One of the things that those of us who were born with or who have acquired disabilities in childhood learn early on in life is that we are considered a burden by the public and by the state. Again, this is amplified in public discourse and particularly in the media. It’s difficult not to imagine that there are people who would prefer we die in a ditch than get access to government funded services and assistance that might improve our lives to the extent that they are liveable, which seems to me to be a minimum ‘quality of life’ standard.

I was always confident, right up until my mid 20s, that I would not be a ‘burden’ to anybody. I had earned a 1st class honours degree and I had participated in university life and worked part-time for the university in a couple of different areas. I was active in politics and I had a good social life. I felt I didn’t have any problems keeping up with my peers. The next step was getting a full-time job so that I could be a fully contributing, worthwhile, useful, taxpaying member of society. Nobody was going to refer to me as a burden! 

Well, life got in the way. 

First, in what I suspect were instances of careful and unprovable discrimination when I was applying for jobs and then when my health began to deteriorate and it became clear I was no longer a suitable candidate in the existing job market due to the unpredictability of my health.

When I had my leg amputated in 2014, it had been 10 years, from ages 24-34, since I’d had anything like a normal life and – even with improved health – with my body wrecked and a very short CV with a gaping hole in it, I found myself unemployable.

The fact is though, by the time I left school, I’d already cost the state a massive amount just in my healthcare alone, let alone in education. I have absolutely no idea what sort of figure we are talking and no real interest in knowing how much I cost the taxpayers of Aotearoa/New Zealand. Tens of thousands? Hundreds of thousands? I know the figure will be staggeringly high.

The time it took for my mother to look after my basic needs, especially as a baby and young child, was also very much higher than the time she needed to invest in my three sisters. That time was intensified greatly during health crises and post-surgical care. I have cost a lot of people a lot of time and money over my lifetime. 

My parents had to make decisions early in my life that were necessary and life-saving but they were not a given. They were far from encouraged to enable me to live any kind of life. For them though, it was a no-brainer. They fought for me and my life. They never weighed up how much I was going to cost them or the Aotearoa/New Zealand taxpayer. I was their baby and they made the best decisions for me with the information they had at the time. Every decision they have made for me throughout my lifetime since then was with my quality of life in mind. This country could learn a lot from my parents’ example.    

Don't get me wrong, I’m a big fan myself of enabling disabled people who can work to get jobs and careers. Not having something meaningful to fill my days is indescribably spirit-breaking and not being financially independent at my age is truly degrading and depressing. 

Given comments I’ve heard over my adult life, I know people think it’s a charmed life not having to work. Not having to work is quite different to not being able to work, though. There are a great many things that are barriers to people getting into and remaining in work, mine happen to be disability-related. 

One place that has been accommodating of my disabilities has been university. After a 15 year break, I’m about to begin my PhD on disability identity in NZ. I have been accepted as a doctoral candidate and by the time you read this, I will probably have started officially, though I’ve been thinking and reading about it for months now.

The chances that I’ll be able to work much, if at all, after I get my PhD I would say are minimal. I hope I’m wrong but I have to proceed in the context of it being a project of value in and of itself. I don’t have the luxury of looking too far into the future, which is completely unpredictable for me, at best.

At this point, it’s a gamble whether I’ll be able to get through the three or four years of intensive research and writing that I’ll need to invest to even get it done, but I think it’s very telling that I’m confident enough in the university environment, with its excellent support system and infrastructure, to give it a damn good go. 

In one of my favourite songs (Fantastic Voyage) off my favourite David Bowie album, Lodger – don't @ me – he sings: 

“Remember it’s true, dignity is valuable but our lives are valuable, too.”