Access by Various artists

5

Marion Bruce, 1925-2016: New Zealand autism pioneer

by Hilary Stace

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

78

Zika and microcephaly: things to know

by Hilary Stace

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.

63

The Blue Inhaler

by Hilary Stace

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.

43

Treatment for itching and shyness

by Hilary Stace

I was born with skin which was often too tight, too brittle, too burning and too itchy. My mother spent a great deal of time trying to alleviate the effects of my eczema including regular bedtime rituals of which I have vivid sensory memories, even though I was still a preschooler.

Before bed my limbs, body and face were smeared with viscous black coal tar ointment that smelt like freshly laid asphalt. (I could never understand why my father’s coal tar soap was orange and smelled nicer). My mother then wrapped me in yards of damp bandage. Lastly she tied cotton mitts on my hands with ribbons.

Then she would get a large bottle with a sugar-encrusted rim from the cupboard. The metallic spoon taste mingled with the sickly but bitter Phenergan syrup. Two special bedtime companions were my soft toys Flopsy Mopsy (a rabbit of course) and Kittie. Their original colours were indiscernible under their patina of grease from the oozing coal tar.

Whether from the medical conditions or otherwise, I was a chronically shy child and my mother struggled to disentangle my fingers from her skirt when leaving me at Playcentre or with friends. So beside the bottle of Phenergan was another brown glass container which contained large green tablets. They were braveness pills and the longer you sucked them the braver you got.

So what was the science behind these treatments? Coal tar is a liquid by product from the process of turning coal into a product called coke which was used in the steel industry. Its skin-soothing properties have been known and widely used for at least 150 years, despite its strong smell and reputation for staining. It was standard emollient treatment for eczema when I was young in the days before steroids were mainstream. There still seems to be uncertainty about why it works including a theory that it limits DNA reproduction. The grease is smeared on skin damp from the water of a bath or shower and helps keeps that moisture in. Wet bandages prolong the effect.

My father’s coal tar was made from the same product but was sold for its antiseptic properties and somehow the smell and colour were altered to be much more pleasant. That soap is still produced, although no longer allowed without prescription in many countries as coal tar has been implicated in skin cancer. (I have had a melanoma removed and never linked it to those years of coal tar; my father used the soap for 84 years with no ill effect). The soap is now produced in Turkey with tea tree oil as its vital ingredient.

Phenergan (Promethazine hydrochloride) was developed over 60 years ago as an antihistamine for those with allergies, rashes, hives, nausea and motion sickness. Histamine is produced by the body as a reaction to person-specific allergens ‒ foreign substances which the body encounters by inhalation, ingesting or through the skin ‒ and antihistamines help reduce the histamine allergic reaction. Phenergan’s main side effect is drowsiness, which suited my mother. The medicine has a variety of names these days and is administered as syrup or tablet. It is now not recommended for children under two, nor be used for no longer than ten days in a row. The dose for children is five mls with a maximum of fifteen mls in 24 hours. I remember my dose as at least one large spoon, sometimes two. But my mother is no longer around to ask.

My mother was astute with her use of braveness pills and their placebo effect. She found large pleasant tasting sweets (not identifiable as such by me), with a hint of sherbet and peppermint and which required a lot of sucking, enhancing and prolonging the placebo aspect. They worked well and I have used them successfully with my own children.

As a shy, eczematic child, I was fortunate to have a mother who was both patient and innovative.

21

Is New Zealand Fair and Square?

by Tom Adson

We, parents in their declining years, have a family member who is a 40 year-old male with disability. A couple of weeks ago, he screwed up his courage to the sticking point – in order to overcome the barrier of extreme anxiety – and accepted the offer of work, in an effort to improve his own wellbeing and  to contribute to the community as a whole.

The work was to deliver circulars and free local papers. A three-day slot was provided for the deliveries to be completed. It was understood that the payment would be $30, so about two hours work was expected when applying the minimum hourly rate.

The following day the papers arrived, later than agreed, so this put pressure on the timeframe. There were 10 different circulars running adverts for the well-known big companies. The weight of the papers was about 70kg (measured by using bathroom scales). They were promptly sorted by the family member and delivered in two trips on foot out of his own back pack.

The following morning, another batch of papers, part of the same job but still to be delivered, was found on the doorstep. They were the Hutt News and the Regional News, weighing around 50kgs. This time the delivery required two adults and the family car had to be used because of practicalities and the bulk of the papers involved – the alternative was multiple trips on foot involving extended time. The large backpack just did not have the necessary capacity.

More than 250 addresses were delivered to. The total time committed to the work was 10.47 hours and the expense for the car at IRD rates of 74 cents/km totalled $5. This makes the true cost of the work to be about $190.00 at the minimum hourly rate of $14.75.

The work experience served to accentuate extreme anxiety for the disabled person and it was necessary to advise the other party to the contract that further service could not be provided.

If $30 is the final sum that is paid (my understanding is that payment is still awaited but that it is likely to be $20 now, not $30), the actual hourly rate based on $30 will equate to under $3/hr for a 40 year old man who has contributed strenuous manual labor. Does this make sense, and is it right and just?

It seems to me that the ‘free economy’ has almost achieved its goal; that is competition has run its course to the point where human rights in Gods Own (NZ) are being contravened. This is because some of its citizens are now doing strenuous manual labour for almost nothing. If payment for the work is not made it will be less than nothing – at least $5.00 for the use of the family car and backpack has been expended. My guess is that this is not an isolated case.

I have just been watching a TV documentary about the “Death Railway” of Burma (1942/43), where men were worked, whipped and starved to death in order to support the economy. Is NZ unwittingly and blithely going down the same track? It looks as though it might be. After all I thought I heard the Chief Economist at the BNZ saying today that the NZ economy is doing well ..."lots of ticks on the right side of the ledger". What about the left side, where we might find the hearts and minds of the people that are the neediest?