Access by Various artists

Living with spina bifida can be physically exhausting.  Sometimes that gets me down.

I often feel a psychological detachment from my body, a sort of disembodiment that comes from a loss of control I feel over my own health and wellbeing.  I constantly curse my body for making me sick, preventing me from doing the things I want to do, for not working properly.  And yet, the consequences can be pretty grim if I don’t look after myself.  That involves getting to know my body and what it needs, being kind to my body and embracing imperfection.

Recently, I joined a gym because I am fat and unfit and I would like to be less fat and more fit.  I was fed up with feeling helpless and unable to keep my own body healthy.  I am doing something positive and proactive for my overall health and I am hopeful that it might help with not only my physical fitness but also my mental health.  Winter is tough for everyone and I am prone to ‘SAD’ (Seasonal Affective Disorder), so it’s important for me to get out of the house and to keep my energy levels up, too.  

Two days after my first couple of sessions at the gym, I was scared to get out of bed because I was weak and in so much pain that I was afraid I might fall trying to get back into my wheelchair.  It had not occurred to me that I might need to pace myself, to begin with, for my own safety. 

Anybody who has exercised knows the horror of gym pain when you start out.  When you add that to chronic pain that is already a constant, the result is, well, very bloody sore.  My overexertion was a mere hiccup.  After a few days of R&R, I am back at the gym, being sensible about how much I can safely do and I am loving it.  

A positive body image is important not only for my self esteem but for my overall sense of self.  Happily, having a positive body image need not involve bikini bodies, svelte physiques, or having the perfect symmetry of Da Vinci’s Vitruvian Man.  Anyone can have a good body image, including a 33 year old, (soon to be less)fat, short, lopsided paraplegic.  I like the way I look.  I’ve genuinely never looked at anyone else and wished I looked like them.  Exercising is helping me to appreciate my physical self more.  I am confident that it will help me to feel even better about being in my own skin as I progress.

I made the decision to start exercising for my health.  It has little to do with how I look.  A toxic aspect of popular culture I have managed to escape is that of comparing myself with others who are held up as aspirational models of physical perfection.  I have spina bifida to thank for that.

I look so different to what is considered ‘perfect’, I had to redefine what it meant to look good from a very early age.  A positive body image for me then is seeing myself in the mirror, knowing that the image staring back at me is as fit and healthy as she can be and is being well looked after.  That is what I am striving for.  That is what looks good to me.

Peter and I went out fishing on ANZAC day.

We used to be regulars on this particular west coast charter boat, ferreting away a few dollars so we could get out maybe half a dozen times a year. The trips usually paid for themselves in terms of fish caught,  but the major benefit was always Peter being able to go out and participate in an activity he loves, with other fishermen... just being one of the boys.  We’d come home tired and wet and blood splattered... all good Kiwi stuff.

Anyway, it had been a while since our last trip.

We had talked about the Family Carers Case as part of the normal ‘waiting for a bite’ chat that goes on, and our absence from the boat had been explained as due to lack of $$$. So, when the skipper’s wife saw us on the wharf that afternoon, her first words were, “You guys will be so pleased now Rosemary can get paid!”

We took (another) deep breath and tried to give a précis of what happened in Parliament on the 17^th of May 2013.

We explained how maliciously difficult the government had made it to actually access the much-publicised Funded Family Care scheme. We explained how only a handful of people had successfully applied.

When we told her that spouses and partners were still unable to be paid,   she said “Oh,  so you’re going to have to take another case to the Human Rights?”  I had to walk away at this point. Peter explained about section 70E of the new Act:

On and after the commencement of this Part, no complaint based in whole or in part on a specified allegation may be made to the Human Rights Commission, and no proceedings based in whole or in part on a specified allegation may be commenced or continued in any court or tribunal.

So, this is where we’re at after well over a decade of discussions, mediation, five weeks of Human Rights Review Tribunal hearing, two weeks in the High Court and just over a week in the Appeal Court.

In case you missed the news... we bloody well won.

However, it’s not even a case of being back to square one. It’s worse.

Describing the effect this had on Peter and me is personally very difficult. Rights were fought for. Rights were casually set aside. The right to fight for our rights was equally as casually taken away.

It feels like I have no right even to state our particular case, even in this supposedly supportive environment.

So, I’ll take us all back to 2008. I simply could not put the case any better than this reporter:

“I'd asked what he (Stuart Burnett) had made of Ministry of Health officials at a hearing in Auckland of the Human Rights Review Tribunal, officials who had used words such as "frameworks" and "initiatives" and who had talked about the strategies and supports in place which benefit the lives of disabled people.”

After fifteen months of deliberation, the Tribunal released its decision.  Required reading for everyone interested in this issue. It is written in plain English and it covers ALL the relevant bases.

Of significant public interest at the time was the assertion from the Crown that simply removing the prohibition against paying family carers would cost $17 to $593 million. That somewhere out there were 30,000 New Zealanders with severe disabilities requiring a high level of care that were not known to the NASC agencies. That the currently unpaid family carers of the unknown 30,000 severely disabled New Zealanders would come out of the woodwork with their demands to now be paid. Again, let me pass you over to one better qualified to comment.

In his evidence to the Tribunal, Brian Easton (to call Brian Easton an ‘economist’ would be like calling U2 a ‘boy band’) expressed somewhat wry concern at ‘the numbers’ and the resultant costings presented by the Ministry:

“It is not necessary for this case to reconcile the tabulations for the purposes of this claim. Suppose the Ministry of Health is failing to identify large numbers who are entitled to its support services. That is clearly a matter of public policy concern, but it is not the focus of the claim which is about those who are in existing receipt of support.

In the event that the Tribunal’s decision were to encourage others in need to apply for their support entitlements, then while this may be fiscally expensive, this reflects neither a change in the policy framework nor the Tribunal’s decision but a reduction in the failure of delivery coverage within the framework.” (Boldface mine)

That’s kind of what claimant Stuart Burnett said:

“Everything in the garden is perfect.  Yeah, right!”

Catherine Masters followed this case as the Crown took it to the High Court.

“She (Martha Coleman, Crown Lawyer) said the system was a good one and key services existed to fill the gaps.

Outside court, Cliff Robinson had said how rosy they make the system sound, to which Peter Humphreys had laughed ironically and said "yeah, I want some of that".”

Hopefully, dear reader, you will have taken the time to read the links. I hope I have made it clear that while this case was predominately about discrimination, which was proven; it was almost equally about highlighting serious flaws in MOH disability support system for those with high, very high and complex care needs.

What do Peter and I feel about this? What this guy says, only with more swearing and a river of tears.

A focused Disability Survey has been conducted after each national Census since 1996. This is the only official source of data about disabled New Zealanders. The first data from the 2013 Disability Survey has been released, focusing on demographic details. Later releases will add detail about needs and barriers.

A Million

The headline finding is that there are now over 1 million disabled people in New Zealand. That’s 24% or about one in four of the total population.

If we understand disability as the interaction between how a person functions and how the world functions, there will obviously be a great variety of combinations. They will be affected by things like a person’s surroundings, life-stage and resources.

Age

The disability rate increases dramatically with age. The survey shows 59% of people aged 65+ are disabled,  compared with just 11% of under-15s and 27% of all adults.

Different age distributions also help explain variations of disabled population rates across different regions and ethnic groups.

Gender

Overall, disabled people reflect the gender split of the total population – 51% female and 49% male.

However 13% of boys are disabled compared with 8% of girls.

After age 15, the proportions are roughly similar but a greater number of women than men are disabled, partly because they tend to live longer.

Impairment Type

The Disability Survey groups personal impairment into broader categories based on answers about activities people have difficulty doing. I have further combined some here. There are some fundamental problems with the way Statistics NZ understands disability and impairment, but this is all we have for now.

This graph shows the prevalence of impairment types for disabled New Zealanders by age (click to embiggen):

Impaired mobility affects 14% ( one in seven) of the whole NZ population.

Impaired mobility, hearing and agility affect a higher proportion of older people than children.

Impaired thinking, learning, mental health and speaking affect a higher proportion of children than older people.

Impaired mobility and agility affect more women than men. Impaired hearing affects more men than women (no surprise to some).

53% of disabled people have more than one type of impairment. Greedy, I know.

Internal Proportions

Updating my list from previous Disability Surveys,
out of every 9 disabled New Zealanders:

• 5 have impaired mobility (getting around) = 567k.
• 4 have impaired thinking, learning or remembering = 470k.
• 3 have impaired hearing = 380k.
• 3 have impaired agility (grabbing things, etc) = 324k.
• 2 have impaired mental health = 242k.
• 1 has impaired vision = 168k.
• 1 has impaired speaking = 128k.

A worldwide Creative Commons Attribution 3.0 Unported License applies to this post. Sacha's personal website is here.

Boy left to eat grass at horror home. This 2013 Sunday Star-Times story by journalist Kirsty Johnston exposed the abuse of vulnerable disabled people who should have been safe in the care of their State-funded provider.

It was one of a series of articles on disability abuse and neglect which won Johnston a 2014 Canon Award for Best Investigation. It was not only the individual cases that shocked, but that systemic failure seemed widespread; there is a general assumption that we have a robust system of checks, safeguards and complaints processes to prevent such travesties.

A Parliamentary select committee undertook a lengthy investigation after earlier incidents and its 2008 report advocated many improvements. Yet disturbing reports continue.

Those uncovered by Johnston and other young journalists led to an independent Ministry of Health investigation led by Consumer advocate David Russell and disability activist Bev Grammer. Their report Putting people first was published in December 2013 and the Ministry of Health has committed to implementing all recommendations, which mainly concern better contracting and auditing processes. Tragically, Bev died before seeing her work implemented.

What do I mean by abuse? Generally this includes:

• Physical – any behaviour threatening physical safety or body integrity
• Sexual – anything non consensual, illegal or inappropriate
• Emotional or psychological ‒ including threats or bullying
• Neglect ‒ such as lack of access to medical treatment
• Financial – stealing or withholding money
• Witnessing abuse
• Silencing so victims are unable or unwilling to complain

Abuse can be more subtle such as photographs and descriptions of vulnerable people in ways that demean their dignity and privacy. This can happen inadvertently in media reports or promotion for providers.

A valuable report provided evidence of abuse of disabled people living in the community (not in residential care but still dependent on services). Independent researcher Michael Roguski examined disability support in the Gisborne area and talked to disabled people, families and advocates. He found a number of structural issues including:

• A low level of societal awareness of disability abuse
• A variety of silencing processes
• A lack of appropriate monitoring
• Poor management practices
• Inadequate reporting
• Inadequate legislation including no protection or support for the disabled person during an investigation of abuse.

The ‘silencing’ that he named was particularly worrying.

• For the disabled person it meant pressure not to report abuse (because of negative past experiences of reporting, fear of retribution, and the sad reality that an abusive care worker is better than no care worker)
• Disabled people feeling they were unworthy of good care, or deserving of abuse
• Normalisation of poor treatment
• Difficulties in communication eg disabled person was non verbal
• Undermining of the disabled person’s testimony
• Collusion by authorities to protect the perpetrator 

Those of us in the sector have probably all heard reports of collusion including subtle pressure such as employees being told they are ‘too much of an advocate’ for disabled people, or to keep quiet as ‘we can’t afford a court case’.

Compliance requirements often focus on improving training (focus on staff), and auditing (systems) rather than focusing on the disabled person as fully human and deserving of quality care. Any focus on the person is often a negative one concentrating on what is ‘wrong’ with them. Many of the providers in the shocking media stories or in Health and Disability Commissioner investigations passed their official audits.

A 2012 survey of disability abuse in the US showed a similar picture to the Roguski report. California’s Spectrum Institute ran an online survey about disability abuse in 2012. N=7289 people across the US, across ethnicities and the age range took the survey (some with assistance), of which 20% identified themselves as having a disability, and almost half with a disabled family member. N=2560 answered Yes to ‘Have you or your family member with a disability ever experienced abuse?’

Of this Yes cohort, nearly half did not report the abuse, and in only 10% was the perpetrator arrested. More women than men experienced abuse, but men were less likely to report it.

Abuse types as reported by those with disability (and many were multiple occasions):

• 87.2% verbal emotional
• 50.6% physical
• 41.6% sexual
• 37.3% neglect
• 31.5% financial

The rates of abuse for various impairment groups:

• Autism 77%
• Mental health 74.7%
• Speech 66.8%
• I/DD 64.3%
• Mobility 55%

The authors summarise: ‘The bottom line is that abuse is prevalent and pervasive, it happens in many ways, and it happens repeatedly to victims with all kinds of disabilities’.

I suspect if we had the resources for such a survey in New Zealand the picture would be similar.

Even without obvious abuse, health disparities between people with intellectual or learning disability (who comprise a large proportion of our disabled population) and those without reveal serious health neglect.

A 2011 Ministry of Health report revealed alarming statistics including life expectancy of 20 years less for people with intellectual impairment than for other New Zealanders. A report analysing health screening data from NZ disabled athletes attending Special Olympics NZ National Games in 2005 and 2009 revealed that even for this population, which is actively engaged in team sports, there were widespread problems with vision, hearing, dental and podiatric health, indicating poor access to appropriate public health services. And for all disability statistics, Māori are disproportionally represented.

Elder abuse is a growing concern. Anecdotally, financial abuse and neglect is common and family members are the main perpetrators. Aged care facilities are our new institutions and we need to be vigilant because we know what happened in the old institutions which had large numbers of vulnerable people but often insufficient resources and staff. Once out of sight and dependent, the risk of abuse rises.

Our Disability Rights Commissioner recently met with his Australian counterparts to advocate for a United Nations Convention to protect the rights of older people. Here, Age Concern has been running a series of ads highlighting elder abuse. The large Kimberley Centre, near Levin, has sold after being on the market for several years following its closure in 2006. Rumours are that the buyer is an aged care provider. Will one institution replace another?

There are, of course, many wonderful providers and care workers. And some disabled people have challenging behaviours. But even one abuse case is too many. There are numerous simple and multi-systemic ways to prevent abuse. We could start with the basic ethical principle of treating others as you would like to be treated. And as fully human. What else needs to change?

The patients in F. Ward were terribly violent. They screamed and yelled all night and half the day. There were no drugs – they were locked in single rooms and you couldn’t go near them. You’d almost get the sack if fewer than three or four people went to their room to give them dinner or tea. Sedatives were almost unknown. Straitjackets were used a lot and great big leather gloves that were locked on – they had a key to lock them on – because some of them would tear you to pieces.

Recollections from 1925 by a nurse in ‘Out of mind, out of sight: the story of Porirua Hospital’ p. 83 by Wendy Hunter Williams, written for the 1987 centennial of the hospital.

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As with all good museums, the main impressions are sensory. You enter this hundred year old wooden villa formerly known as F Ward of the old Porirua Hospital through a heavy door. In the porch, there is evidence of roosting pigeons. Once inside it is silent, but noisy with history.

The main part of the museum is a long dormitory with thin windows and a high celling. Two rows of narrow iron-framed beds would have been the norm here. Perhaps a staff member controlled the scene while standing behind the high desk that is on display. Although there is autumn sun outside it is cold inside this uninsulated wooden building. My colleague reminds me that the schools and houses of our childhood were also cold in winter – so not unusual.

Historical interpretation is provided in the form of neatly hand written posters around the walls, enhanced by fading photos. The arrangement is chronological starting with the first Wellington asylum in 1854 on the current site of Karori Normal school. Overcrowding led to a bigger building on the hill where Government House now stands. That too outgrew its site and in 1887 a large new asylum was built here near the township of Porirua, up the hill from the railway station. Bricks for the building were made by prisoners at Wellington’s Mt Cook gaol, and some bricks, with their indented arrows, are on display. This ward was a later 1909 addition.

In the early decades such asylums (meaning respite from the stressful world) provided a home for the homeless, old, poor, ill and disabled, as well as those with mental health conditions. Up to 1500 residents/patients (the preferred terms) lived on this site. Some were free to come and go, some were locked up, and others were merely unable to care for themselves. My great uncle’s wife was here and he took the train every weekend to visit her. She was never mentioned by the family, and I don’t even know her name.

This was a working farm until the 1960s so farm implements are on display. In glass cases there are examples of specially made hospital crockery, key chains, old medicine bottles and a variety of medical implements including an enema kit. There is an ancient x ray machine. There are also machines for delivering electroconvulsive therapy which are smaller and more portable than I expected. A photo shows a group of nurses administering the therapy to a patient in bed. Our guide says that properly used, anaesthetised ECT helped many patients, probably because it acted ‒ much like the newer SSRI drugs ‒ by raising serotonin.

Truby King (1924-7) and Theodore Gray (1927-46) are listed among the men who headed this institution. Official Visitors – community-appointed vigilance– included political activists Janet Fraser (1924-34) and Annie McVicar (1926-50). The first social worker wasn’t appointed until 1952, and psychologists only gradually came into the picture. There weren’t many tools for treating mental illness in the early days so newly-developed drugs were embraced with enthusiasm. Many patients had dementia from syphilis and one treatment used inoculation with malaria parasites to induce fever and thus hopefully kill the syphilis.

A low ceilinged corridor leads us to other rooms. The seclusion room is small and a lockable shutter covers the window. A hole in the wall provides surveillance. The unrippable canvas blanket and bristly mattress would have been among the only objects in the room. Pipes now lead across the roof and our guide says of course they wouldn’t have been there in the old days. The walls bear the scratches and names of former inmates.

Further along we are shown some of the former single rooms (as mentioned above). They have been opened up into bigger rooms housing valuable collections, including research materials and registers (waiting for students looking for interesting research topics).The room I find the hardest has a collection of dental weaponry that transports me back to the painful days of the ‘murder house’. I sympathise with those who react to some of the other memorabilia here in this museum. The irony is that in the old days the patients apparently had as good dental care as the welfare state’s children. A former classroom for younger patients is now an office. A larger room was a teaching space where students were paid to train as specialist psych nurses. We learn that since nursing training became Polytech-based, user pays and generic, it has not attracted the numbers of males it used to.

Above a wheeled bath are a long list of instructions for the patients’ weekly bath. Beside it an abandoned doll in a bassinet reminds us that intellectually disabled adults lived here too.

Our guide reminds us that this facility was built, run and staffed by people who mainly had the best of intentions. They followed the latest theories about the science of mental illness and for the provision of an asylum for healing. But insufficient staff and resources allowed systemic practices to develop that often undermined those ideals.

We walk out another door, down a couple of battered steps and are back in the 21^st century. We drive out past the current facilities – the forensic and intellectual disability mental health units - where some of those from the back rooms of the institutions now reside.

The Hospital site on the hills above Tawa is extensive, green and sunny. The land and buildings belong to Capital and Coast District Health Board, but they are not loved. The Museum is a Category 1 historic place, open on Tuesdays 1-4 pm and staffed by volunteers. Its future is precarious. Do visit while you can. But don’t go alone.