Karen Peterson Butterworth
‘Sticks and stones break my bones, but words don’t hurt,’ my 1940s schoolmates would chant – right after they’d called me Bandy, Lanky or Hoppers. There were other Bandys and Lankys in the school but I was the only Hoppers. Some people feared that polio may remain infectious for years after the initial infection. The most daring would touch me with a fingertip then leap backwards and go to wash their hands. They’d scramble to avoid holding my hands at PE, so Warty and I usually ended up holding hands with each other, with a ‘normal’ child shrinking on either side. Warty never caught polio, but I grew warts all over my hands.
At our school there was also Googly (with protruding eyes), Block-ears (who happily couldn’t hear the epithet), Fatso and Skinny. Skinny was a worse label than Fatso. Penicillin was mostly reserved for the armed forces; and you needed good reserves of fat to survive pneumonia, dysentery, meningitis or blood poisoning. Adults would often say, this child ‘needs fattening up’. The winners of Plunket baby contests were invariably fat.
The New Zealand Listener recently published a story on Eleanor Roosevelt by Redmer Yska. An excellent piece of journalism – if only he had resisted applying the common journalists’ cliché ‘wheelchair-bound’ to Eleanor’s husband.
If Franklin Delano Roosevelt had actually been confined to his wheelchair 24/7, how could he have served as President of the United States of America for three terms? For starters, the halls of government and other public places had steps and stairs everywhere.
In fact FDR almost never let his wheelchair be seen in public. He knew that being seen as a ‘cripple’ would lose him authority as well as votes. His callipers stayed hidden under his trousers while aides took him to gatherings through back entrances and inconspicuously helped him up steps. He would then prop himself upright behind the lectern and give full play to his brilliant eloquence.
Over my lifetime the word ‘cripple’ has transformed into ‘handicapped’, then ‘disabled’, then ‘person with a disability’. It never took long for the pity and contempt attached to the discarded term to taint the new one. Another persistent element was the stereotype of the ‘brave cripple’, seldom explicitly voiced, but implied by extravagant praise for activities the able-bodied achieved without comment. Books and movies on this theme continue to rake in dollars.
From age sixty-five onwards, publicly funded support for people with disabilities changes its name to ‘aged care’. Its focus changes to helping us stay in our homes rather than move around our neighbourhood. Younger disabled people receive outdoor wheelchairs and car adaptations to help them go to work or study; but we seniors are only given devices that help us move around our homes. With this narrowing of support, we risk being saddled with that most limiting term of all – ‘housebound’.
The condition of being literally housebound is not nearly as rare as it should be. After we leave the work force, loneliness and depression become likelier every year as siblings and close friends die, move away or go into care. Progressive closures of local bank and retail branches and their replacement with internet-only transactions don’t help. Total Mobility Taxis have a top limit to their subsidy that renders inter-village travel too expensive for seniors whose income is limited to national superannuation.
In old age we need mobility within the community as much as we did when we were engaged in an education and a career. We still have experience and skills we can contribute to the community at less cost than paid workers, even after subtracting the cost of mobility aids.
I am much more than any word characterising me solely by my disabilities (now numbering three) and my eighty-four years. I am infinitely more than the multiplication, trigonometry, chemistry, physics, geography, anthropology and history of my genes, life experiences and choices. The universe inside my skull is different from that inside any other head on Earth. It will die with me, leaving traces behind in other lives and minds for better or for worse.
No one knows what relationship their internal universe bears to the ‘real’ one our senses, instruments, imagination and research have revealed to date. Objects look three-dimensional to me only because my two eyes are set in a way peculiar to my own and a few other species. The precise way I see colours is not to be shared by all, maybe even many other people.
The complexity and essential unknowability of natural phenomena and other human beings gives birth to a universal urge to classify, simplify, label and polarise the world around us. Beautiful and ugly, good and bad, able and disabled, weak and strong, winning and losing, are all human constructs whose definitions and borders vary according to the definer’s culture, religion, locality and era.
I had a fourth nickname at school that I didn’t mind: Dictionary. The five months I spent unable to do much else but read gave me a lasting love of words. Just as a stick can aid walking and oratory, or be used to hit someone; so words can be liberating or limiting. Stereotyping can be taken to the length of holocaust, ‘ethnic cleansing’ and killing fields. Alternatively words can be used as Homer, Milton and Shakespeare used them – to convey universal insights that illuminate and enrich human life.
