Access by Various artists

The suggestion about a possible Universal Basic Income (UBI) was only one of numerous suggestions to come out of Labour’s Future of Work initiative. This a wide-ranging policy discussion that the Party’s economic development spokesman, Wellington Central MP Grant Robertson, has been leading for the last year or so. But the idea of a UBI dominated reporting of the Future of Work conference in March.

This is not a new idea, even in New Zealand. For example, Gareth Morgan and Sue Bradford both promoted the idea, from the right and the left respectively, in response to the Welfare Working Group (WWG) in 2010. They agreed that it was a simpler and fairer way to distribute money to those at the bottom. However the WWG report in 2011 led instead to the streamlined benefit system we have today with an increasingly punitive system for our poorest citizens, who include many disabled people.

However, once you get to 65 your status changes, your basic benefit entitlement increases and there is universality of National Superannuation for all the over-65s. National Super cannot be considered a UBI because it is not universal cross the whole citizenry, but it shows that a government could implement a UBI if it was so inclined.

Following the Labour Party’s Future of Work March conference, discussion was lively on social and mainstream media about a UBI. A suggestion of $200 a week had been made as a possible starting point. Some of those on benefits immediately dismissed the idea and said it wouldn’t be enough to live on. A figure of $200 a week or about $11,000 is currently less (although not that much less) than many welfare benefits. But those critics missed the point. The UBI is about universality. A system needs to start with universality of an amount, however small, for every person, including children, and then some universal and fair system tops that up according to need, if required.

Professor Guy Standing who had led the discussion on the UBI at the Future of Work conference, later spoke in Wellington about the concept. He is Professor of Development Studies at the University of London, and a founder and co-president of the international NGO Basic Income Earth Network. Formerly with the International Labour Organisation, he is mainly known for coining the term ‘the Precariat’ to describe the modern situation of widespread insecure low paid work.

At the Wellington meeting organised by the New Zealand Fabian Society, Professor Standing talked about trials of UBIs in various countries, with some even set up as Randomised Control Trials, the scientific positivist ‘gold standard’. He described a pilot in India funded by UNICEF whereby everyone, of all ages, living there at a certain point in time, got the same token regular amount of money. Even with a small amount, people soon started to act communally, putting aside some of their UBI towards community facilities. This illustrates that social benefits multiply from an UBI, whereas capitalism tends to divide.

He advocated that a UBI should start small, be piloted and brought in incrementally. It can be paid by taxing capital, currently undertaxed in most countries, and he was shocked to learn that New Zealand has no death duties. He says we tend to give subsidies to those who are the better off in society. ‘Working for Families’ is a subsidy from which the poorest are excluded. Another example could be the accommodation supplement which beneficiaries have to apply for but which goes straight to landlords.

He also used the term ‘plundering the commons’ to explain the privatisation of assets built up by citizens or of natural resources. Such privatisation denies an income stream for the citizens, and also leaves them to clean up any mess (even literally such as pollution) while private interests profit. The privatisation of our electricity resources and the export of our water are two obvious examples. Norway kept state control of its oil industry and now both the citizens and society are wealthy. So if we taxed the bottled water industry, at say, $1 a litre we could well afford a generous UBI.

So regarding disability. How could a UBI work in New Zealand?

I will use my son’s case as an example. He is currently a beneficiary, although, like his peers, he would love a proper job. This year we are on our fourth lot of paperwork since January to prove how much he earned last year in interest and in a job he finished in 2014 (so there was only a small residual payment in 2015).

His annual review for Work and Income works on an approximate calendar year but financial and other organisations work on a financial year. So I, as his agent, went through bank statements and pay slips to translate the information into the calendar year data they required.

That was not good enough. My assessment was not trusted and I was asked to provide the information on an official form, which the bank would charge to produce. I ended up providing lots of printouts and photocopies and at the time of writing it remains unresolved. All this will, eventually, make a difference of about $5 a week to him. This system thrives on distrust, is cumbersome, punitive and bureaucratic.

If we had a UBI he would get the first, say, $200 no questions asked as his right as a citizen, the same as every other New Zealander, regardless of age, would get. He currently gets about $60 more than that a week, and other beneficiaries get more in various supplements which currently involve a large amount of time and paperwork. But he has friends who cannot afford the public transport fare or who have insufficient support or resources to even start providing the paperwork. Poverty and hopelessness are the only constant for many beneficiaries and disabled people.

The next issue is how to create a simple system to assess need above what is provided by this theoretical UBI - a system that is not means-tested or ring-fenced, and would work for everyone whatever their circumstances. It would need to be one simple person-centred needs-based system, based on respect, justice and trust. There would no longer be divisions in disability support between ACC and MoH. But our current disability support Needs Assessment Service Coordination model is not the right one as it is ring fenced with strict eligibility requirements.

Instead we need a system that asks people what they need to participate in and contribute to the community if they do not have paid work to top up their UBI. We could also, for example, believe parents and schools when they say that certain children need extra learning support.

With taxes on housing and land, property speculation would no longer be lucrative, and the power of the state could then provide housing security through social housing (with Universal Design of course), income related rents and other policies, so many people might not need much of a top up to their UBI.

Those who say a UBI can’t be done or is too expensive should look at history when earlier New Zealand governments managed such great jumps forward. In 1938 the first Labour government brought in the ‘cradle to grave’ welfare state, financed by a fair tax system. It included disability pensions in a limited form and an accessible public health system. A Family Benefit for children paid to mothers was another form of universal financial support. In the early 1970s we got ACC with its principle of no fault compensation for accident and in 1975 the Disabled Persons Community Welfare Act (thank you JB Munro) brought in support for those whose impairment was not caused by accident.

With political and public will we could create a UBI plus a simple, trust based person-centred top-up system. It could be funded by a fairer tax system and investment in our income earning public assets. Savings on a number of fronts could be made. A UBI would replace the expensive to run, bureaucratic and demeaning benefit system. Much of the detail such as a fair needs assessment system could be developed by public discussion in partnership with the best public servant minds. Just imagine the enthusiasm and expertise disabled people and beneficiaries could bring to that project!

Most importantly, a UBI would value all the citizens and their contributions including all that voluntary work my son and other beneficiaries do, such as helping with community activities, pet feeding, or even giving blood. Every human would be equally valued.

As you might expect, I don't closely follow the singing career of Susan Boyle, so I'm a little late to the news that last month she suffered two traumatic incidents, at Derry and Heathrow airports respectively. 

My immediate thought was of her revelation in 2013 that she had been diagnosed with Asperger Syndrome. As is very frequently the case with people who are diagnosed as mature adults, the news came as a huge relief to her. Among other things, she learned that her childhood diagnosis of brain damage was incorrect. Her IQ was above average.

But that does not mean she doesn't need support. What happen to her last month sounds like a classic autistic meltdown – or, rather, two of them. It seems the earlier incident, in Derry, was triggered by the unexpected departure of her brother on an earlier flight. That meant two things: she didn't have her usual support person, and the plan had changed without warning.

I have been thinking about travel-related anxiety lately, because our older son, at his own behest, did his first independent travel recently. It was only to Wellington, and only after a test-run with me in January, but it did bring home to me how much potential there is for confusion and anxiety in air travel.

Further, he stayed with good friends in the capital, who reported his anxiety at not having, and keeping to, specific times and plans when they went out. We're all so evolved to each other at home that this is something we almost never see. So that was a reminder too.

I sensed a little of what it might be like on my first day in Brooklyn, New York, recently. I didn't know Brooklyn at all – which way was even up? – and it seemed like a series of small things, from the foreigness of the money and the voices to the Metrocard ticket machine inexplicably rejecting my Visa card, built into a feeling of anxiety that lasted perhaps half an hour.

But, of course, I was fine. And when, at the other end of the trip, I inflicted the ultimate unplanned change on myself – by being a great big dumbarse and getting my flight time wrong – I dealt with the problem wearily and methodically, even when things started to go yet more poorly. I'm lucky.

Our son is a far more frequent and accomplished user of public transport than I am, but when he first started, there was one evening when he accidentally shortpaid his bus fare and the driver told him he'd have to get off at the end of K Road. Big change of plan. From what I understand, our son got confused and anxious, then simply locked up. Not all meltdowns are kicking and screaming – sometimes they're more like self-shutdowns. I presume all this happened in front of other passngers.

I've always been grateful to the unnamed bus driver who realised there was something more going on than a shortpaid fare, and told our son to sit down and he'd take him where he needed to go. Part of the reason I'm writing this is that it might help other people recognise a meltdown and do the right thing if they do.

This checklist of what not to do is a good start. Our family experience has trained us towards declarative, rather than interrogative, language – don't pepper someone with questions to add to the processing overload. It's better to put a proposition: "If you're having a meltdown, we could go somewhere quiet." Don't raise your voice, obviously. There's no "snap out of it" fix, but reducing noise and stress will help. For that matter, helping will help, like the bus driver did.

Or ... as someone who works with core autistic people noted to me, it might be that attempts to help might simply add to the noise and be really unhelpful. I didn't say this was easy.

And I don't have all the answers here, so I'm interested in hearing from adult ASD people on their experiences and what has helped them. Given that almost all the information online about meltdowns relates to children, I think this would be useful.

Oh, and also, Susan got on her plane just fine the day after her bad experience at Heathrow. Good for her.

In the 1960s, Marion Bruce was one of the first parents in New Zealand to get a diagnosis of autism for her son. So rare was the diagnosis considered at the time that it could only be confirmed by a visiting expert from London, retired child psychiatrist Dr Mildred Creak, when she came to visit her Quaker relatives in Wanganui.

Marion sought out other parents and in 1969 persuaded the Intellectually Handicapped Children’s Society (today’s IHC) to allow them to form an autism subcommittee. Eventually this became the Autistic Association, now Autism NZ. Those parents fought for recognition, support and services in an era when autism was seen as a result of faulty parenting; the ‘refrigerator’ mother. A ‘Life Story’ for Marion was published in the Dominion Post 19 March 2016 and is reproduced in full here.

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She fought discrimination to help autistic children

By Bess Manson and Hilary Stace

Marion Edna Bruce. B Christchurch June 26, 1925. M. Lyell Bruce (d 1981). 2 s 2 d. D Wellington February 25, 2016. Aged 90.

Marion Bruce spent her life trying to make a better world for her autistic son. In doing so, she helped scores of other autistic children and their families.

She was effectively the founder of what is now Autism New Zealand after persuading the Intellectually Handicapped Children's Association to establish an autism sub-committee in 1969.

Bruce had four children, the youngest of which, Andrew, was somehow different and not allowed to attend the local school. He was eventually diagnosed with autism, a condition so rare at that time that a tentative assessment could only be made until an overseas expert from London, Dr Mildred Creak, visited to confirm the diagnosis for the few children with this label in New Zealand.

Creak, a retired child psychiatrist who had developed a diagnostic criteria for autism, encouraged Bruce to contact other families in New Zealand to set up a support network for parents.

Their first committee meeting took place in 1969 under the umbrella of IHC.

Over the years, the group ran seminars, workshops and holiday programmes and lobbied for understanding and resources for autistic children. This group became the Autistic Association and eventually Autism New Zealand, of which Bruce was a life member.

Philippa Barker, the former national secretary of Autism NZ, says Bruce was a pioneer in helping to get autism recognised in this country.

"She was the go-to person for information and advice on autism in New Zealand when no-one knew anything about it, when there were no resources or facilities. In the UK there were schools for autistic children but not here.

"She lobbied for facilities and to have autism recognised as a condition. She travelled abroad to conferences, often at her own expense, to learn about the condition and brought back information to parents here.

"A lot of people with autistic children were floundering until she came along."

Bruce was fiercely devoted to her autistic son and very determined to give him a better life.

However, at the time of Andrew's diagnosis, autism was seen as the fault of the parents, particularly mothers, and so families faced considerable discrimination. Without community support or access to local educational options Andrew went to live at Hohepa, in Hawke's Bay, where he remains.

Her advocacy for him and their relationship retained the life-long intensity that other parents of disabled adult children might recognise.

She lobbied to establish local schools and services in whatever way she could, including through membership of the Wellington Hospital Board, which established the Puketiro child development centre.

Marion Bruce and her younger sister Barbara were born in Christchurch and grew up in Wellington with their father Maurice Fougere, who was in the New Zealand Army, and mother, Edna Lisle,an auxiliary nurse.

She went to Mt Cook Primary School and Wellington East Girls' College where she shone academically, topping all her subjects in the sixth form. She was encouraged to go to university by her teachers but it was wartime and she was instead directed to work at the Dominion Museum.

Bruce spent her time collecting specimens, learning taxidermy and taking exhibits to schools. She often talked about carrying squashed dead possums in a bag on the tram, hoping no-one would smell it.

She learned how to plait and weave Maori kete and other items in order to teach the skill to school children. An expert braider, she wore her hair in her signature braids wound around her head until her 80s.

After gaining a diploma in group social work with the YWCA in 1945 she went to work for the YWCA in Wellington and the Hutt Valley as an organiser of youth activities and community development for women.

In 1947 she graduated from the University of New Zealand (at Victoria University) with a BA in languages.

As an experienced youth and community worker, Bruce was selected as one of two New Zealand women to join a delegation of 28 from across the Commonwealth to be sent for specialist training in youth group work at the University of British Columbia in Canada. She returned to Canada in the early 1970s to represent the NZ YWCA in preparation for International Women's Year in 1975.

She married a young doctor, Lyell Bruce, in 1949 and they had four children. They lived in Patea and later settled in Porirua.

After Lyell's death in 1981 she moved to their beach house overlooking the sea in Raumati South until relocating to the Harbourview rest home in Papakowhai a couple of years ago.

Bruce's contribution to the community extended well beyond autism circles.

She worked with JB Munro, the long-time head of the IHC, in developing the NZ Federation of Voluntary Welfare organisations, and was appointed to the Royal Commission on Social Policy. She was a member of the Wellington Hospital Board from 1971 including a term as chairwoman until the boards were all sacked overnight in 1991 by the National government.

As a doctor's wife, she knew the difficulties of mothers having to take their children all the way into Newtown to Wellington Hospital by public transport, especially if wives where separated from whanau, or were  from a Pasifika background  or lacking language skills. Ensuring Kenepuru Hospital expanded to offer full services was an early priority in Bruce's tenure on the board.

She volunteered at Hartham Women's Centre in Porirua, Plunket, Girl Guides and was an adviser at the Mana Parents Centre. Bruce was awarded the Queen's Service Order in 1986 for services to the community.

Bruce had a fierce intellect and was a superb craftswoman, spinning and knitting fine wool and making pottery. She also travelled extensively. Before a trip to Greece in 1980 as a world council member of the YWCA, she learned Greek. Her travels also took her to China, South East Asia and the Middle East.

She was a voracious reader and thinker, and an energetic and passionate community advocate whose contribution to society changed lives for the better. 

Sources: Philippa Barker (nee Stephens), the Bruce family. 

Reprinted on Access with permission

The Zika Virus seems to have come out of nowhere to be declared a World Health Organisation Public Health Emergency of International Concern on 1 February 2016, after a substantial spike in cases of microcephaly and Guillain-Barré syndrome were reported in Central and South America. Now it threatens our part of the world.

This is the same status the WHO gave to Polio a couple of years ago when eradication of that disease had stalled and cases were starting to pop up again.

Apart from causing Guillain–Barré which is a nasty, mostly temporary, paralysis not unlike Polio, the main effect of Zika Virus infection seems to be the risk of microcephaly to babies born to infected mothers. Microcephaly is the label given to those born with unusually small heads and consequent brain damage. Although many babies do not survive birth, some do and grow into healthy (although disabled) adults.

Several years ago on Public Address there was a discussion with PA reader Islander about children born with this impairment – she had heard from family members with experience in midwifery and nursing that microcephalic babies were often quietly left to die. (This is now known as ‘wild’ or unofficial euthanasia by some.) She consulted with her midwife sisters and subsequently clarified that it was  it was in fact anenocephalics who were "quietly left aside".

Joe Wylie added in the same discussion that there were several people with microcephaly at the Kimberley Centre when his parents worked there in the 1960s. But until this current Zika Virus outbreak it was considered a rare condition, even in the disability community. This might change.

A US mother of two girls with microcephaly has become an instant celebrity with her realistic and mainly positive story of parenting her family.

It is hard to know how this outbreak will play out. The mosquito apparently cannot survive at the moment in New Zealand but the virus is already here, and it is spreading through the Pacific. Tonga has just declared it an epidemic.

Under current New Zealand immigration regulations families with a microcephalic child would be denied permanent entry to New Zealand because of the potential for future costs against the state.

So the Zika Virus raises a whole lot of issues (in no particular order) that will need more attention in the months and years ahead.

•• Disability as tragedy

• • Support for disabled babies, children and their families, including immigrant families

••  Access to pre-natal screening and all the related ethical issues such as "then what"?

• • Access to late term abortion

••  "Wild" euthanasia

• • Vaccination – if one becomes available

••  Heavy use of pesticides particularly in poor, crowded, residential areas

• • Pregnancy, gender, and autonomy

• • Need for good, responsive, well-funded science

And probably much more.

The Ventolin inhaler is a reason I am not dead.

Ventolin is a reliever medication for asthma delivered in a Metered Dose Inhaler or MDI, and globally it is one of the most commonly used treatments for any medical condition. I am not dependent on it as I used to be, as I now take a new generation MDI combining reliever and preventer asthma medications, but Ventolin is a useful backup. Asthma can be fatal and I personally know of several people who have died of attacks. Hence the ongoing international drive for more effective medications.

What is asthma? It can be a wheezy or shallow fast breath though constricted airways in the lungs. The tubes have reacted to some trigger by tightening and producing mucus, leaving less room for the passage of air.

The causes of asthma are numerous and person-specific, from allergens to a change in atmospheric pressure. It can become a battle to breathe, with the out-breath often harder to perform than the in-breath. The whole body can be hunched over concentrating on the effort to get the lungs and their extensive network of tiny inflamed tubes to inflate and deflate and send that essential life force of oxygen around the body to the organs, particularly the heart and brain. Some people experience this bronchospasm as if painful metal bands are encircling the lungs. A puff or two of Ventolin can ease that crisis, even if temporarily, by soothing and relaxing the breathing muscles.

The Ventolin inhaler package consists of a metal canister, a metering valve, a mouthpiece and cap. Some people, particularly children, who find it difficult to manage a synchronised puff/in-breath, use a bulbous plastic spacer to take in the metered formulation. Ventolin contains a chemical formulation called salbutamol (in most of the world) or albuterol (in the US) which is used to relieve the bronchospasm which is the indicator of the asthma attack. When the canister is pressed into the valve, the drug is propelled by liquefied gas into the airways of the lungs which are then forced open.

The Ventolin inhaler went on the international market in 1969, but, as with most inventions, was built on existing technology. It was probably a joint effort by a team, whereby young poorly-paid technicians did much of the work. Hopefully it went through ethically robust research trials, but I suspect there were some animals and suffering in there too.

Before Ventolin, I used an earlier-version MDI which wasn’t as effective and required more inhalations, which caused heart palpitations. My teenage friends also liked to try it to experience the effect of a pounding heart.

Wikipedia names various men who developed the idea of inhalation for lung conditions. One English doctor developed an inhalation jug in the 1770s, which, a hundred years later, had evolved into a ceramic pot inhaler. French inventors developed atomisers or nebulisers from mechanisms used to dispense perfume. My first inhaler, a 1955 invention, drew from these traditions with the addition of pressure. Although the names of men are attributed to the inventions I suspect they had wives or assistants who knew how to calm wheezy children, and who provided practical input.

The tricky bit was inventing a device which was sufficiently calibrated to deliver an accurate dose for asthmatics of any age anywhere in the world. Adding the propellant chlorofluorocarbon (CFC) to the pressurised canister was the secret. Two decades after Ventolin’s invention an unexpected negative consequence of that gas ‒ atmospheric ozone depletion ‒ made buyers and prescribers wary.

New devices powered by breath alone were produced, but they were not as efficient. In New Zealand, Pharmac funded a generic without CFC but many chose to pay extra for the Ventolin, while the less effective device led to accusations of inequity for poorer asthmatics. Eventually Ventolin developed a CFC free propellant (HFA134a, also known as norflurane) on which Pharmac still imposes a part-charge. Blue inhalers including generics (cheaper versions made in other countries) are all commonly called Ventolin, although official brand names vary.

I have a friend whose son was a participant in the trial for a CFC alternative in the 1990s, illustrating the internationality of Ventolin.

Another New Zealand link to Ventolin involves its parent company: GlaxoSmithKline. Early last century Joseph Nathan’s dairy company in Bunnythorpe in the Manawatu developed a fortified milk powder for babies which he called Defiance. Truby King, that notable eugenicist and the founder of Plunket, promoted the powder for "building bonny babies".

But Nathan’s international business colleagues were wary of feeding babies ‘defiance’ so renamed it Glaxo. GlaxoSmithKline is now the second biggest international drug company. GSK is not just known for Ventolin – in 1963 they also invented Betnovate, a commonly used ointment for eczema. That is another story.

Most posts on this Access blog have tended to concentrate on the social model of disability whereby disability can be considered as a social, economic and political construction which creates barriers to full participation in society for people with impairments. But this post shows that there is also a place for technology, and it can even keep you alive.