When Dr William John Little presented his most important paper defining what was to become known as Cerebral Palsy, to the Obstetrical Society of London, in 1861, colonial New Zealand was in its infancy. Around this time gold was being discovered at Gabriel’s Gully sparking the Otago gold rush, the first telegraph line between Christchurch and Lyttelton opened, war between the Settlers and the Maori raged in Taranaki, the Auckland streets were lit by gas for the first time and lunatic asylums appeared on the sceneInitially known as Little’s disease, Dr Little’s paper described this medical condition as a brain injury caused by oxygen deprivation at birth. The main thrust of the paper was showing how the act of birth occasionally imprints upon the nervous and muscular systems.
Dr Little’s observations were surprisingly accurate for his time. The good doctor was indeed quite enlightened when he recorded that even the most severe could participate in considerable activity and therefore experience some enjoyment of life.
He also wrote many of these patients are in fact intelligent, despite their appearance, and that treatment was often effective.
These observations of Dr Little were quite profound but unfortunately largely forgotten about for many years before becoming the keystone to modern therapy.
The lack of action on Dr Little’s observations led to many years of neglect and misunderstanding of the child and adult labelled spastic. In New Zealand when aging parents could no longer take care of their disabled adult son or daughter the only alternatives were a lifelong sentence attached to dreary hospital wards or even worse, a lunatic asylum. Like most asylums, Porirua which opened in 1887, housed not just the mentally ill but also people with intellectual impairments, the elderly, alcoholics and the indigent. Without doubt the more severe Cerebral Palsy people would have been included in that list.
In 1899 Mother Mary Aubert and her Sisters of Compassion relieved the situation somewhat when they received chronically and terminally ill adults and disabled children into St Joseph’s Home for Incurables in Buckle Street, Wellington. In 1907 the Home of Compassion was established at Island Bay for people with blindness, Cerebral Palsy, spina bifida, down’s syndrome and hydrocephalus. However the deep rooted rejection of the disabled from mainstream society throughout the history of the world remained strong
The fate of Freda Langabeer is a good example. Freda’s story is told in the 1950 September edition of “The New Zealand Spastic.” The reader is introduced to Freda when she was 27 years old. The article states “Her 27 years, for herself and her parents had been largely spent in a fruitless and frustrating search for treatment and medical help.” For four years her parents took her to a child specialist in Auckland three times a week at a charge of ten shillings a time. The final verdict was that Freda “would never walk or talk and is mentally deficient”
Since the age of eight Freda developed a technique to sew and later on knit with her feet. “Her work laid flat on the floor, while she sat in an armchair, her eyes at an almost impossible distance from her work” Yet her collection of baby booties, table cloths and weaving were of remarkable quality.
Spasmodically the reader was kept informed over the years on Freda’s progress. In 1963 she was the first of four to try out the short term stay accommodation option at the Una Carter in Remerua and she leapt at the change of taking up residency when the Sutherland Unit opened in the 1970’s, when she was in her early sixty’s. Unfortunately it was a very sad end to Freda’s life as there was a 65 year old age limit at the Sutherland and she was taken back to an old people’s home, where she had been living for the greater part of her life.
Lucy Hyde was another regular contributor to the “Cerebral Palsy News” in the 1960’s. Her writings were full of fun and energy of a typical young woman trying to enjoy life to the max. Unfortunately her reality was a contrast to her stories. She lived permanently in Mater Hospital surrounded by routine and boredom.
In one of her stories she described a typical morning being dressed by one of the sisters in her ward.
She wrote “while Sister was dressing me she said what a shame it is not your morning for going out”
Her story revealed that she was rescued that day by her friends who took her for a drive. Luckily she did have friends who shared her faith and enthusiasm for life.
In her story of “My holiday at Stanmore Bay” she told the tale of when she and her friend Jan adjusted to a holiday environment which included a steep access to the beach. She wrote of combating waves in a tyre made to measure and the kind people they met who drove them back from the beach each day. Lucy also appreciated her friend letting her to do the little things, as friends do.
In another story she describes the excitement of going to a fancy dress ball party and the fun of dancing in a wheelchair. The Spastic Fellowship annually put on dances which she very much appreciated.
At the end of each day though she found herself back in the ward, there was the occasional adventures to Stanmore Bay and Orewa but they were few and far between.
More often than not she contented herself with made up stories set in exotic locations like caves full of treasures.
The Christmas period took her fleetingly to a different dimension. In the December edition of the Cerebral Palsy News she describes “the atmosphere of carol singers, decorations, opening of presents whilst trying to guess what was inside and touring the wards looking at their displays. Last stop, the maternity ward, where she looked through the windows at bassinettes; blue for boys, pink for girls.”
As this historical account reveals, conditions improved gradually over the years, for Cerebral Palsy people.
Rotary came to the rescue of people isolated in hospital wards who faced a bleak future. One Rotarian in particular was determined to improve the quality of life of children with disabilities. In 1929 Mr Alexander Gillies (later Sir Alexander) was appointed senior orthopaedic surgeon to Wellington Hospital. The Rotary branch in Wellington asked him to address the club one night in 1930. It is said that this address sparked the formation of The New Zealand Crippled Children Society.
The CCS agency was officially formed in 1935 in Timaru. The newly penned constitution stated that the Wellington based national executive would provide a co-ordinating voice to decide on policy, with autonomous branches throughout the country answerable to the national body
Within six weeks of that inaugural meeting 14 branches were formed or were about to be formed. They were given the mandate to concentrate on the fields of education and vocation. They were also encouraged to work with local hospital boards or educational institutes to obtain the best medical care for their members
Right from the beginning funding was a concern if future plans were ever to be realised. As fate would have it Lord Nuffield, friend of Sir Charles Norwood, was visiting New Zealand in 1935. Sir Charles took the opportunity to take leave from the conference with the purpose of asking his friend for a 1000 pound donation. Over dinner Sir Charles realised he under- estimated his friend’s generosity as Lord Nuffield gave 50,000 pounds and the following day 10,000 pounds as an endowment for the Wilson Home.
The Auckland branch of the Crippled Children Society was formed just after the 1935 conference and like all other branches around the country immediately set about finding disabled children in the area, by asking headmasters at local schools to survey their designated districts. They also surveyed the level of acceptance as the stigma of having a disabled child was still very prevalent.
Obviously the need was there as in the first year of existence the branch had 150 applications for assistance. The branch also set about improving the educational and vocational conditions of disabled children and young adults.
A search of the CCS history files shows right from the beginning how the agency strongly supported the urgent needs of Cerebral Palsy people. As a parent body it nurtured the fledgling ambitions of what would eventually become the Cerebral Palsy Society of New Zealand.
Cerebral Palsy people would directly benefit from the historical progress of the CCS. In 1939 children with CP were among the recipients of “travelling medical clinics” which were formed when the NZ CCS allocated 1,000 pounds to the Department of Health. In 1942 the first full time welfare officer (predecessor of contemporary field officers) was employed with 742 on the Society’s register. These dedicated officers became a vital link between parents and an expanding Society and Government medical and educational services.
In 1945 the Society employed a speech therapist part time, two remedial gymnastics and a man specialising in underwater gymnastics – said to provide a sense of balance in the water as well as relaxed bodies. Therapist who specialized in various fields began to appear like qualified speech therapist Barbara Makgill. Barbara continued to be associated with the CCS for 31 years. When she retired in 1976 she said that the major development in her lifetime was the recognition that CP victims were both intelligent and treatable.
In 1940 a survey, conducted by the national body of the CCS, found 600 Cerebral Palsy children were registered to various branches around the country. Besides the numbers the survey also revealed the alarming lack of treatment and education for these children. Eight years later the American Dr Earl Carlson, who had CP himself, answered the Government’s call to investigate the problem and come up with solutions. Other links in this serialisation of Cerebral Palsy history are devoted to Dr Carlson’s wonderful contribution but it’s important to point out here that a lot of heed was given to his recommendations. One suggestion in particular sparked immediate interest was his concept of day schools for CP. He recommended that these schools should be established in areas where there were more than 12 “spastic” children of school age. A subcommittee headed by Dr Egerton Caughey was formed to look into the matter further, as the situation was worsening by the year. In 1949 the Auckland branch alone had 212 Cerebral Palsy children registered.
At the CCS Auckland branch Cerebral Palsy people were welcomed as clients in 1950 when the Occupational Therapy department open its doors at their new site in Mount Street. At the same site they were welcomed as students when the first school rooms opened in 1951, as employees at the new created knitwear department in 1952 and as patients when Dr S.L. Ludbrook was appointed honorary medical adviser in 1953.
CP Children who were schooled by correspondence participated in the mid week club which met every Wednesday night in 1952. The following year this concept evolved into a Devil’s club for boys and an Angel’s club for girls. This was the seed that led to an incredible range of recreational pursuits, over the years like skiing, motorised wheelchair hockey and an indoor bowls sport called boccia
The other great institution of the era was the Wilson Home which was closely associated with the CCS right from the beginning. The wonderful contributions of staff members over the years – like the first matron Miss Faulconbridge and CP Society’s life member Glenis Lobb – who became charge physio in 1977 and held that position for over a decade – will be discussed more appropriately in the chapter on Treatment. However it’s important to recognise that the Wilson Home became the catalyst of change for the aftercare treatment of disabled children. In 1937 Mr William Robert Wilson and his wife Bertha gifted their property to the Auckland branch of the CCS. It was stated the main purpose was to provide accommodation for the “convalescence of crippled youngsters”
However the financial concerns that hindered the birth of the CCS re-surfaced. It was soon discovered that the Home would cost the Auckland branch of the CCS the annual sum of 1500 pound a year. The solution was found when the Government took over the administration of the Home with the support of the CCS. In August 1937 the Auckland Hospital board took over the administration which immediately prompted the transferring of children from Auckland Hospital wards to their new home.