The good life
Things have improved out of sight since the days when disabled people were put in institutions, far from the public gaze. But we're not there yet. Richard Walker reports. Making strides since Tokanui
K-Pop fan Stevie Cook is drawing a picture of her aunt’s striped cat as a birthday gift. She’s pretty sure it’s a good likeness. Once the sketch is done she will finish it in ink, a process likely to take a few weeks, given that she is mostly working on it on Tuesdays. A lot of her art is for family but she also sells some through her arts business, Stevie’s Creations, and through Enrich+.
At home she has some of her artworks hanging on her wall, including an early painting of a unicorn. ‘‘It’s not one of those girly-girl ones. It’s more of a dark themed.’’
Cook, 28, comes weekly to the Enrich+ art workshop from the flat she lives in at the back of her nana’s place. Today is a diet cheat day; she bought chicken and chips from the Bakehouse for lunch.
As for the K-pop, BTS is a current favourite and the BlackPink sweatshirt she’s wearing is a bit of a giveaway when it comes to the other, a South Korean girl group. ‘‘I got my flatmate onto them.’’
Cook is into the merch, which she typically buys from online store Wish. Some of the money she earns comes from art sales but she’s also won money from the annual IHC competition. This year she has made it into the top hundred that go to Wellington for judging, with the results to be announced in just over a week. Cook’s hoping for a top-three finish. It’s definitely not out of the question because she’s placed before. ‘‘Fingers crossed.’’
There was a time when women and men like Cook faced being placed in an institution. This week the Royal Commission into Abuse in Care has been hearing experiences from such institutions as part of its section on disability, deaf and mental-health institutional care.
Some accounts have been harrowing, describing physical and sexual abuse. Among them, one survivor told of being force fed when he refused to eat and of being touched and kissed by a nurse when he was 15. Another described becoming a ‘‘chemical blob’’ after excessive medication.
It was a time when families could be encouraged to institutionalise children with disabilities, when people with cerebral palsy could be institutionalised, when even being squint-eyed could be enough. Older people developing dementia could also find themselves in such institutions.
And it’s hardly distant history; Tokanui Hospital finally closed for good in Waikato in the late 1990s; Kimberley Centre in Levin in 2006.
Enrich+ general manager David Ireland was a nurse at Tokanui, starting as a new graduate in 1986 and carrying on to take charge roles before finishing in 1994.
During his time there was a move towards closing down the institutions, and with that has come attitude change and increasing acceptance of people having the right to live a full life, he says. He recalls one client from the Tokanui days who was put in the institution as a baby because he had a squint eye. ‘‘You wouldn’t get that these days.’’
He says there were good and bad things that went on at Tokanui, but he didn’t see anything he wasn’t comfortable with. He saw things that were ‘‘on the edge’’ and which he would comment about, but he never saw any direct physical abuse. ‘‘I’m not saying it didn’t happen. All I can speak from is my own experience.’’
He also says he heard stories of ‘‘totally inappropriate staffing behaviour’’ including locking up patients. ‘‘There was the use of seclusion. It happened. It happened quite regularly,’’ he says. ‘‘Nowadays, you have a lot more training in terms of de-escalation and all those types of things.’’
It was the environment of the day. ‘‘Everybody knew everybody. And like a big family, you know, there were arguments, and there were disagreements.’’
Despite all the change since, we’re still not fully there in terms of society’s attitudes towards disability, he says. There’s still stigma and some Enrich+ clients still get hassled in public. But the more opportunities they have to be involved in their communities, the more it will change.
Te Awamutu-headquartered Enrich+ works with people with disabilities, including autism and neurodiversity. The philosophical approach has evolved dramatically, he says. Rather than caring for and doing to, now it’s about supporting the person to achieve what they want to achieve. ‘‘It’s about being client led, which is so much better. I mean, you and I have choice, so we’re trying to just provide that environment so that clients can choose what they want to do.’’
Hamilton clients help out at the food bank, while downstairs from Ireland’s office the day he talks to Stuff a group is doing paid work washing cars. Another client is learning the Road Code to try for his driver’s licence. It wouldn’t have happened in the Tokanui days. ‘‘Definitely not.’’
There’s no doubt there has been a huge shift in the approach to disability support in the years since institutions started closing down. Those spoken to for this story agree there is a way to go, but the establishment in June of Whaikaha, the Ministry of Disabled People, is a beacon of hope.
Researcher Brigit MirfinVeitch, who presented this week to the royal commission, says the average New Zealander probably doesn’t realise what a groundbreaking step it is to have Whaikaha, led by disabled people and moving in a ‘‘very new’’ direction in terms of the way that the disability system responds to, resources and listens to disabled people.
‘‘I would say it’s a really exciting step forward,’’ she says. ‘‘It is a major systemic change that disabled people have been asking for for a very long time.’’
Alongside that is the planned rollout of Enabling Good Lives, a model of resourcing and supporting disabled people underpinned by eight key values that disabled people and their families and whā nau have identified as fundamental, she says. ‘‘So again, another big shift.’’
The establishment of Whaikaha has been decades in the making, with disabled people and communities calling for change, says Amanda Bleckmann, who is its interim deputy chief executive (operational design and delivery). ‘‘For too long, disabled people have faced barriers in everyday life.’’
Disability has sat in the Health Ministry, and the change provides an opportunity to take a social model approach, she says. ‘‘As well as transforming the disability support system, the aim is to help improve outcomes for disabled people in areas such as employment and housing, education, health and wellbeing. So this is about ensuring that the focus is on disability at the very top level across government.’’
Whaikaha will be commissioning disability support and has funding to support the 43,000 people receiving services. There is also funding for the rollout of the Enabling Good Lives approach, which is already being included in disability support contracts.
IHC advocacy director Tania Thomas says there is further work to be done. Her organisation has called for an overhaul of what it describes as an ‘‘outdated system’’ that determines disabled adults’ access to community programmes based on assessments they were given as children.
Thomas says the framework is inequitable for children in any case, but it is ‘‘ridiculous’’ to then use that
assessment to make decisions about support for the adult. IHC wants the entire framework re-evaluated and restarted from scratch.
Thomas is also concerned about what she describes as a ‘‘huge’’ pay-equity problem in trying to attract and retain support workers. ‘‘It’s really difficult when they’re not paid enough.’’ Staffing shortages make it hard to provide goodquality support. ‘‘For example, if you have got five people that live in a house and one wants to go to music lessons, and the other four don’t want to go out – if you’re short of staff, nobody can go out.’’
The disability sector is in the early stages of a joint pay-equity claim for support workers, along with home and community health, mental health and addictions, and aged care.
A further challenge is what Thomas says is a shortage of respite care for carers.
‘‘With this new ministry, with the Mā ori health authority, with the combining of the 21 DHBs, there is a real opportunity to kind of switch our gaze from the problems and the issues to, ‘Okay, we know what they are, this is what we need to do to sort it.’ ’’
Mirfin-Veitch is director of the Dunedin-based Donald Beasley Institute, which has been doing disability research in Aotearoa New Zealand for almost 40 years. Her presentation to the commission was based on research in which they worked with 16 people ‘‘in a very intense way’’.
Only one of those talked about the institutional context in a positive way, she says, while everyone else told ‘‘very distressing’’ stories about what happened to them. That includes physical abuse, but also the way institutions ‘‘strip them of their personhood’’, removing choice and control over their lives. Even those who may have had friends they were fond of or staff they identified as good didn’t want to stay. ‘‘Universally, people were abused in institutions and couldn’t wait to get out of them.’’
Mirfin-Veitch notes that staff generally have a different perspective about what occurred in institutions from the people who lived in them, and those perspectives may also depend on the particular time they worked there.
People reported being happier in community-based environments, but she has a word of caution.
‘‘Some people that we spoke with also identified that life isn’t exactly as they want it to be yet. And the message in our research is that we’ve still got a way to go to ensure that disabled people have total choice and control over their lives, are always seen as competent human beings who have the right to make decisions, and the right to have those decisions respected, that they get a choice over who they live with, and where they live, that they get access to education and employment, and just being part of the community.’’
Abuse, including bullying and belittling, is still a serious factor in the lives of many disabled people, she says.
Trisha Benge, director of the McKenzie Centre in Hamilton, is one who has helped drive change when it comes to supporting disabled people and their families.
She has to go back 40 years to recall her time at Tokanui as a newly graduated occupational therapist. She didn’t have any choice; back then the Health Department part-funded study and allocated placements for graduates. So Benge found herself in the psychopaedic ward at Tokanui for two years. It was, she says, a learning opportunity, partly around what she could do differently to support children.
‘‘At that stage, we were looking at the individual. And now, of course, it’s grown into looking at the family, that the child is basically like the flax – they’re the centre of our whā nau and community that supports them.’’
She recalls one small boy in particular, a preschooler with a learning disability and health issues. ‘‘I was thinking, how do I help this little person have a good life?’’ Benge asked the Tokanui paediatrician if she could take him to a Playcentre. To her surprise, the doctor said yes. Benge took him along, with a succession plan for nurses to step in. ‘‘I think the very first time a nurse took him, she went in uniform, the second time she went in her ordinary clothes.’’
There were, she says, no barriers put in her way despite it being out of the ordinary. Benge was only at Tokanui for two years, but she knows the community activities continued for the youngster after her time. Sadly, he died because of his health issues. ‘‘But people loved him.’’
So Benge doesn’t speak ill of Tokanui, but she’s happy it’s closed down. Deinstitutionalisation was absolutely the right way to go. ‘‘Involving people with disabilities in their community, you can’t fault that. It used to be, ‘I’ll take you out of your community’. And now it’s people with disabilities saying, ‘Hey, community step up.’ ’’
The McKenzie Centre, which works with preschoolers with disabilities and their families, opened in 1984. Benge started there 25 years ago, after spells at similar organisations.
It offers a radically different approach from that of Tokanui. It’s about inclusion, she says, about voice and choice.
‘‘Our job is not to isolate, but it’s to enable the child to be included,’’ she says.
‘‘But our job really is about supporting parents with connections, education and advocacy to be able to do whatever is the right level of all those things to support their own family.’’
Therapeutic input is still important, but what the centre is trying to do now is empower families using more of a coaching, mentoring model, she says. It’s a partnership model. Siblings are also included. ‘‘Probably the longest relationship that a lot of children will have will be with their siblings.’’
It’s an individualised approach, Benge says. ‘‘It’s a big contrast. To me, McKenzie Centre and Tokanui, we are at different ends of the spectrum.’’
There’s a quiet hum in the Enrich+ art room where Stevie Cook is working on her cat drawing, with a radio adding easy listening in the background.
Hannah MacFarlane, who has been working at the same table as Cook, has a painting of a pair of tropical birds to show. They’re beautifully bright, bursting out from the dark backdrop. Her first venture into landscape is with the awards judges at the moment. Fingers crossed.
MacFarlane, who flats with two others in Te Awamutu, also loves painting by numbers and gets her creative side from her mum. Maybe her taste in food as well, because she’s not a fussy eater but her dad is. ‘‘Really fussy. He doesn’t eat mushrooms, pasta. And,’’ she adds, ‘‘he doesn’t eat butter chicken.’’
She’s not keen on spicy stuff herself, but other than that will eat anything. MacFarlane is putting her cooking skills to use at the community cafe. ‘‘The first time I went up there, I was doing the dishes, and then I got my confidence doing the scones. I actually do lemonade scones. I know the recipe by heart.’’
At a nearby table, Jack Forster is working on a landscape image which he will ultimately etch into wood using a hot pen like a soldering iron. He also has a bright diamond painting beside him depicting a wolf, a year-long effort involving applying thousands of colourful beads. The wolf is his favourite animal. ‘‘It’s just, you know, the look to them and the howling, plus I like all animals. Because I do wildlife photography as my main hobby,’’ he says. ‘‘Years ago, I knew a guy named John. He was the main person who taught me about birds since I was a young feller.’’
He’s taken photos at Maungatautari and all around New Zealand. It requires a great deal of patience, as the birds move around. ‘‘Over the years they flock together and, you know, some birds are there, and the next minute there is a different species.’’
Art co-ordinator Theresa Siemonek says Covid means the groups are operating in bubbles, but pre-Covid clients could participate in a range of programmes, from bush walking to car washing and cooking.
‘‘I have to say I’m one of those people that love what I do,’’ she says. ‘‘I get to be really creative with these guys, and we’re always trying new mediums, new styles.’’
When it comes to the IHC awards, she helped sift the initial offering. Out of 11 entries, seven made it into the top 100. The winner pockets an eye-watering $5000, and they’re all auctioned off.
It would seem churlish not to include Siemonek’s request to mention another auction, Enrich+’s Winter Art Festival fundraiser. They’ve still got tickets to sell for the night, which celebrates the artistic talents of people in the disability community.
In the computer suite, Robbie Hamilton has something else on his mind; he’s planning a trip to Hamilton, starting with online research. This one’s his own trip, but he’s also involved in Go-Getters, a group currently planning to go to Ninja Valley in Frankton. They ran a bake sale last week to raise funds for their outings, which included a recent trip to the redwoods in Rotorua.
He notices the book I’m carrying, about Gracelands, the forerunner to Enrich+.
‘‘I’m in that book. I’ve got two pages in that book.’’ He thumbs through and quickly finds the spot.
It was a long time ago, he agrees. ‘‘He’s an old man now,’’ Ireland jokes. Hamilton laughs. He’s actually turning 35 in a couple of days.
Cook’s unicorn painting might be dark-themed, but the picture she chooses to be photographed with definitely is not. Done in 2020, it’s all bright, geometric shapes, the most colourful elephant you ever saw.
It’s cool coming to the art group, she says. ‘‘I love seeing the art that other people do.’’