issue 233 - July 1992
Vic Finkelstein tells a fable of turning tables.
It all began when Shanti was late again for school. The rain was to blame. It had churned up the mud so much that she had had to drag her lame leg way beyond the usual river crossing to find a safer spot. Crossing the river was harder than she'd expected. She reached school, exhausted, muddy, wet - and pleased with her success. But the teacher, Mr Pahad, had shouted at her. 'You silly child! You should stay at home when it rains.'
He was in a bad mood today - not helped by the fact that he knew he would probably feel compelled to help Shanti get home after school. That would mean getting mud on his suit - and tonight he was going to a banquet to receive an award for his contribution to the welfare of the disabled children at his school.
A thought came to him. What if all disabled people, children, adults and older people, were sent to a special village where everything was designed to meet their special needs? There would be special schools, special sport, special employment and special housing.
Whenever he had a spare moment during the rest of that day Mr Pahad re-wrote his speech for the banquet. Then he had another brainwave. He would take Shanti with him. She looked so sweet and shy with her muddy dress and twisted foot. He would explain her plight and ask for donations to build a disabled village for all the disabled people of the district.
So a dazed Shanti found herself at the banquet, being waited upon by servants in spotless uniforms. She felt embarrassed by the mud on her dress and wanted to use the washroom but Mr Pahad insisted, 'No, no. I want everyone to see you the way you are.' Mr Pahad made his speech and, indicating Shanti, explained his proposal for the disabled village. People liked the idea. They clapped and cheered. Later they arranged committees for fundraising. It was decided that the village would be built on the other side of the river and that it would be a village for wheelchair users. If it worked other villages would be built for the blind, deaf and people with learning difficulties.
By the end of the evening Shanti had been generously patted and kissed but never actually spoken to. In the weeks that followed her picture appeared on a large fundraising poster all around the district.. The poster read 'Shanti and others like her need your help. Give generously for the disabled village.'
* * *
On the day the village was opened flags flew, there was food for all. The disabled people were lined up to meet famous guests. Speeches were made and more awards given to Mr Pahad. When the festivities were over the able-bodied care-givers and professionals established a convenient (for them) routine to get the residents out of bed in the morning and back into bed in the evening. During the day the villagers had occupational therapy.
At first the villagers hated being taken away from their homes. But as time passed they found that being together had certain advantages: they could meet more easily and share ideas and feelings. Shanti liked being in a place where everything was arranged for people who lived in wheelchairs. You could do all sorts of things which you were prevented from doing 'beyond the river' as the able-bodied world was now called. You could even do your own shopping. This made the residents think: if they could do their own shopping why should they not work in the shops themselves too? They suggested this to Mr Pahad. But he said it was 'unrealistic'. So were most of the other suggestions residents made. Relations between staff and residents got worse and worse as one suggestion after another was trashed by the able-bodied authorities.
The villagers got together to discuss the situation. They debated for several hours. Some felt that with the force of argument they could change the attitudes of Mr Pahad and his helpers. Others felt there was no point - that able-bodied people didn't begin to understand the experience of disability. The villagers finally formed a committee and began plotting revolution.
A few days later, when most of the helpers had gone over the river for their regular monthly staff meeting with Mr Pahad, the disabled residents took direct action. They barred the village gates, closed off all entrances and exits and flooded pathways leading to the village.
Shanti, being the smallest and lightest, was lifted onto a wall where she could watch for the returning helpers while disabled villagers prepared to do battle. 'They're coming, they're coming.' Shanti screamed with excitement. From where she sat she could see everything.
First the helpers were surprised. They never expected disabled people to do anything without their assistance. Then they got angry as their feet got wet and muddy in the pathways and they found all the entrances closed. When they realized that their jobs were on the line the helpers became all the more convinced that 'the disabled' urgently needed their help. They broke down the gate and rushed in - only to bash their heads and fall flat on their backs. A low ceiling of poles had been tied into place with just enough room for wheelchair users to move freely underneath but too low for the 'walkers'!
Then a row of villagers moved forward, pushing the dazed care-givers out of the village with scoops that had been fitted to the front of each wheelchair. Eventually the helpers gave up and left the village.
There were many changes after the Revolution. Roads and paths were dug up and replaced with wheelways. Doorways and ceilings were lowered to a more reasonable height for wheelchair users. The shops, the school, and places of employment were all altered. Fashion became more interesting as the village shoe shop began selling multi-colour designer tyres for wheelchairs.
As Shanti grew up the memories of the able-bodied soon faded and the villagers forgot that they were supposed to be disabled. In this village they were the 'normal'. Life went on peacefully for several years until one day the villagers were once again brought face to face with the able-bodied from across the river.
It happened during a particularly heavy rainy season when the river burst its banks and flooded the able-bodied village. Those who escaped made their way to the nearest high ground - which just happened to be the disabled village.
Shanti was busy making a pot when she spotted the first flood survivor on the main wheelway. Then another, and another. A whole stream of able-bodied people poured into the village, getting their feet stuck in the wheelway tracks, and knocking themselves out on the doorways as they stumbled into houses, looking for shelter. Soon the village doctors had their hands full. Other villagers prepared food for the victims - who had to eat off the floor because the disabled villagers had long dispensed with tables. Their own wheelchair attachments were suited to all uses.
The disabled villagers felt sorry for the able-bodied. They seemed so clumsy, helpless. Many of them couldn't even get out of the old community centre building that had become their residential home without damaging their feet in the wheelway tracks. Special transport was devised so that a little trolley for the able-bodied could be attached to a wheelchair.
But who was going to look after the able-bodied? They could not work as everything was designed for people in wheelchairs. Soon able-bodied cripples in ill-fitting clothing made for wheelchair users were to be found on wheelway corners begging for food and money. More fortunate able-bodied refugees were taken from their residential home to the day centre where they could do some basket work and other useful occupational therapy.
The biggest problem for the medical profession was the chronic bruising of heads. The village doctors diagnosed this as 'cerebral indigene' and recommended either a harness to keep the able-bodied bent double at wheelchair height or padded guards which were strapped to the forehead.
Shanti was becoming increasingly concerned about the welfare of able-bodied cripples. She was asked to organize a public appeal for money to provide the able-bodied with 'care in the community'. Then someone suggested that instead of care the money might be used to set up a special place where the able-bodied could live. This reminded Shanti of Mr Pahad's original scheme for the disabled village - and she was opposed to it.
'Disability,' she protested as she addressed a public meeting on the subject, 'isn't something that you have. It is something that happens when one group of people create barriers by designing the world only for their style of living.'
And she went on: 'We will not make any progress by keeping disabled people on one side of the river and non-disabled people on the other, with each side creating barriers. What we need is to build up the banks so that the river does not flood and to build bridges across the river so that we can meet, exchange experiences and create an environment where we can celebrate human difference.' She had become quite an idealist, had Shanti.
* * *
Vic Finkeistein teaches disability studies at the Open University, Milton Keynes, UK.
Beverly - a tale of three chairs
Owning three ageing electric wheelchairs is a bit like painting the Golden Gate Bridge - an exercise in constant maintenance.
I have a love-hate relationship with my equipment. With it I can live as I choose. I work at a career which satisfies me, for a salary which pays the mortgage and I live alone. I love this. To maintain it I am completely dependent on all my wheelchairs working all the time. I fear and dread a chair breaking down as when it does my life comes to standstill. Without an electric chair waiting for me I can't get out of bed, move to my clothes to dress let alone reach the bathroom. If my outdoor chair breaks down I can't leave the house or drive to work. I could be pushed in a manual wheelchair to do these things if I had a full-time care giver... but I don't want that and anyway it would cost me more than the chairs.
Putting together my fleet has been an education in the art of political compromise. 1 have learned at first hand that there is nothing simple about believing in 'rights not charity' for disabled people while living in an age where rights are in short supply. I have guiltily benefited from lots of charity. Averting my eyes from fellow socialists, as a student, I was aware that if I had not accepted the gift of an electric wheelchair from a voluntary group which was 'Propping up the Bourgeois State' I would have not been there to encounter our guiding ideology.
The physical relationship between the user and her electric wheelchair is more akin to that between a foot and a shoe than a driver and a car. On the other hand most electric wheelchairs cost about the same amount as a good second-hand car. Some cost more. The chair which I need to use with my car cost more than the car when they were both new. There was government sponsored help available for one or the other. As a measure against depreciation, I chose it for the car.
The salesperson who sold me the chair knew his advantage. As I gasped at the price quoted he replied: 'But think what this means to you as a disabled person. You would be able to live a useful and meaningful life, INDEPENDENTLY. Surely that is priceless to you.'
'But it's a lot of money, which I haven't got.'
'You could get it. Why not approach your local Lions Club, the primary school down the road... sponsored walks, sponsored slims, get someone to run in the London Marathon. You'd be surprised how quickly it would be raised for a bright girl like you if you got your picture in the paper!'
'But I work. I'm an adult. I have lectured at the local school.' 'Well, there you are then. Of course you will be able to get them to raise money for you.'
In the end I borrowed the money from my parents.
There is plenty of scope for profiteering with equipment for disabled people. Everyone in the Movement knows that disability has spawned a multi-million dollar industry world-wide. When aids have been 'Specially Designed for The Disabled' tag on them there is likely to be a special price mark up as well.
The same industry contains some of the most generous business people and artisans who, as allies, make and repair our equipment at minimal profit and sometimes at a loss. The man who repairs my chair repeatedly patches up aging parts charging me very little for labour. Quavering I ask him if it is enough. It would be a disaster for me if he went out of business.
Until the cost of living with a physical impairment is refunded to individuals, disabled people will not have the economic clout needed to be taken seriously as consumers.
Beverly Ashton is a fundraiser with Action on Disability and Development UK, based in Frome, Somerset.
Avoid: Cripple, invalid, physically challenged or differently-abled.
Avoid: Insane/crazy/mental patient.
Avoid: Mentally retarded/defective/feeble/ simple/mongoloid.
Avoid: Spastic. Fits.
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Avoid: Suffers from... or is a victim of...
AUSTRALIA: DPI Australia P0 Box 713 Fyshwick ACT 2609. Tel (6) 2961 744
CANADA: Coalition of Provincial Organizations of the Handicapped (COPOH) Somerset Building 926-294 Portage Avenue Winnipeg, Manitoba, R3C 0B9. Tel (204) 947 0303. DAWN Disabled Women's Network Canada, 658 Danforth Avenue, Ste. 203, Toronto, Ont, M4J 1 Li. Tel (416) 406 1081.
UK: British Council of Organization of Disabled People (BCODP), De Bradelei House, Chapel St, Belper, Derbyshire DES lAR. Disabled People's International (DPI)/ Disability Awareness In Action 11 Belgrave Road, London SW1V 1RS. Tol (71) 834 0477. Action on Disability and Development, 23 Lower Keyford, Frome, Somerset BAll 4AP, UK. Tel (373) 473064. International Disability Education and Awareness, William House, 101 Eden Vale Road, Westbury, Wilts BA 13 3QF. Tel 0373 827635.
US: World Institute of Disability, 510 16th Street, Suite 100, Oakland, CA 94612 1502, Tel. (510) 763 4100. Independent Living National Organization, 2539 Telegraph Avenue, Berkeley, CA 94704, Tel: (510) 841 4776.
AFRICA and MIDDLE EAST: Southern Africa Federation of the Disabled (SAFOD) P0 Box 2247, Bulawayo, Zimbabwe. Disabled People of South Africa (DPSA), P0 Box 11149, Brooklyn 0011, Pretoria. National Association for Disabled People In Lebanon Al Mina St., Tripoli Lebanon.
ASIA-PACIFIC: DPI-Pakistan, 34 Sadar Bazar, Ghulam Mohammed Abad, Faisalbad, 38900. DARE, 19 Jalan 5/7, 46000 Petaling, Jaya, Selangot Darul Ehsan, Malaysia. ADD INDIA, 10 Norris Road, Bangalore 560025.
LATIN AMERICA: ORD, Tica Bus 2 al Sur No 912 Bolonia, Apd 3750 Managua, Nicaragua.