issue 233 - July 1992
Difference and Defiance
Disabled people face formidable discrimination.
Vanessa Baird explores the roots of prejudice and
describes a movement that just won't take it any more.
Julia was talking to me. But I was not listening to her. Instead a whole series of uncontrollable thoughts were flashing across my mind. Like a pre-programmed computer quickly running through its motions.
Why did her body look so different? What was the name of her condition? How did she manage her daily life? Had she been like this since birth? Or was it the result of an accident?
As Julia talked I couldn't focus on her words. Her speech sounded strange.
Would I be able to make out what she was saying? What was I going to do? Panic?
I took myself in hand. Told myself to concentrate, not on her body, her difference. But on what she was saying.
Once I was able to do this I soon realized that she was actually speaking perfectly clearly. And what she was saying was that most non-disabled people did not mean to do harm, but they did anyway - through ignorance, through prejudice, through conditioning.
This hit home. Had not my own residue of fear and prejudice just spilled over, drowning out any chance of understanding what was being said to me?
It had got in the way of my recognizing Julia not as an object of medical interest, of curiosity or pity, but as another person who was taking the trouble to explain things from her point of view. And as a person who is part of what is probably the most dynamic and profound - albeit quiet - revolution occurring in the world today.
This collection of prejudices was my problem. But it's a far more damaging and frustrating problem for disabled people who have to confront such attitudes. To start getting rid of prejudice, though, you have to know where it's coming from.
Let's start with fear. Fear of the unknown and fear of difference: a dangerous combination that can provide the ingredients for fascism. Julia only seemed strange to me because our society keeps disabled people hidden from view - segregated into special schools, special centres. Then there is fear of suffering. Our society, obsessed as it is with aesthetic conventions of wholeness and of how a body should look and function has instilled in us a horror of physical impairment.
But now Julia was saying: 'Our impairment is the least of our problems. We find ways of living with it. What disables us is the attitude of able-bodied people'.
It happens in a multitude of ways. When buildings or transport systems are thoughtlessly constructed so that disabled people cannot use them. When disabled people cannot get jobs because it is assumed that people without impairments will be more productive workers. When disabled people are put in institutions and deprived of their rights.
The birth of 'disability'
Attitudes towards disability vary greatly across cultures and historical space. Some North American native people killed disabled people at birth or forced them out of the community. In other societies certain types of disability - especially epilepsy - are viewed as the result of divine possession. In the pre-industrial societies of Europe people with impairments were classed as 'cripples' or 'village idiots', but they were usually very much part of the community. Many lived by begging - others contributed to agricultural production, as still happens in rural societies in developing countries.
Industrialization changed all that. Production lines were geared to able-bodied norms. Speed and uniformity were central to profitability. Fast-moving machinery was not designed to allow for difference and disability among the workforce. During the Industrial Revolution people with impairments became a class of industrial rejects. And the hectic cities of the industrial age were difficult, dangerous places for disabled people to negotiate. But industrial society found a solution to the 'problem' of what to do with people who did not fit its agenda: the Institution. Here 'the disabled' could be looked after - and forgotten about. Sociologist Vic Finkelstein sees this as the era when 'cripples disappeared and disability was created'.
Families may not have wanted to cast out disabled loved ones. But how were workers to spend long hours in factories and look after disabled relatives at the same time? Not all disabled people went into institutions, of course. But their existence had helped make disability a thing of shame. Disabled people were kept out of sight, and out of the mainstream of society.
Today thousands of disabled people are still segregated from the rest of society. But opposition is spreading worldwide. Disabled teacher Khalfan Khalfan in Zanzibar is clear about what he thinks of special schools for disabled children:
'These isolate the children and demoralize them. They make the children ask themselves: "Why are we alone? Why are we not treated like other children?". But when you integrate disabled children with non-disabled children they are first and foremost children together. You can counter the negative attitudes that society creates about disability very early on. We are doing this with mixed playgroups in Zanzibar - and it's really working.'
Disabled people are in the process of liberating themselves from another force which has constrained them for centuries: the medical profession. Doctors and paramedics colonized disability, much as a country might be colonized, and turned disabled people into material for research and experimentation. Medicine was presented as progressive, humanitarian and helpful. It would save and extend disabled lives. It would relieve suffering. It could provide hope where there seemed to be none.
Today many disabled people are challenging the 'medical model' of disability by pointing out that most of the problems associated with their impairment are social and environmental. So why should medical people be accorded such authority in deciding how disabled people live their lives? Obsessed with clinical conditions and the need to label, conventional medical practitioners are probably the group least well equipped to treat disabled people with respect or to understand their real needs.
What's more, the medical goal has always been to make disabled people as 'normal' as possible - rather than to listen to what the disabled person might want. This determination to 'normalize' means that disabled people are often pressurized into having operations and therapies that do more harm than good. It's also at the basis of the philosophy of rehabilitation.
The following experience of 'rehabilitation' is typical: 'If, as happened to me following my spinal injury, the disability cannot be cured, normative assumptions are not abandoned... The result for me was endless soul-destroying hours [in hospital] trying to approximate to able-bodied standards by walking with calipers and crutches... only using a wheelchair as a last resort rather than seeing it as a disabled person's mobility aid, like a pair of shoes is an able-bodied person's mobility aid.'1
Able-bodied medical and related professionals have a stake in often well-paid jobs managing disabled people. Disability is big business - especially in the West. And the areas of fastest growth today are medical technology and biotechnology.
Technology can be very liberating for disabled people. Computers that will enable a person with severe cerebral palsy to communicate, advanced motorized wheelchairs that allow a quadriplegic person to move around easily - these are clearly beneficial. Electronic technology can help integrate disabled people more easily into the workforce, especially if they need to work from home.
But there is a darker side to the medical technology boom. Within the past few years a number of technologies have been developed to control what are called 'challenging' behaviours. This usually means aggressive and self-injuring behaviour involving people with intellectual or psychiatric disabilities. Control systems like these are supposed to be a 'last resort' but they are already being widely used in schools and institutions in Canada and the US. One such technology is a a full-body suit and helmet with a computer-controlled electronic shock system.
Ethics versus techno-fix
But disabled activists are determined to expose what is going on - and to get an ethical debate going. Recently, to a packed hall of about 1,000 disabled people, Canadian writer and activist Marcia Rioux asked the crucial question: 'What is the ethical basis for technology designed to hurt people to make them do something different? And why do non-technological - that is social and environmental solutions - receive so little attention and almost no research funds?'2
The simple answer is that there is a lot more money to be made out of technology. But there is another reason. It has to do with attitude. 'Techno-fix' solutions reinforce the notion that disability is a problem of the individual - not of the society or the environment. So it's easy for researchers to ignore the fact that people who are exhibiting 'challenging' behaviours are usually confined under constant surveillance in institutions where they are deprived of normal human interaction. As Marcia Rioux went on to ask: 'Is technology to be a substitute for the changes necessary to enable a citizen to integrate into the social and economic structures?'
The second growth area is biotechnology and the new reproductive technologies, including pre-natal genetic screening. This is geared towards eliminating disability by ensuring that disabled babies are not born. Many disabled people are incensed by this. Not only does it insinuate that they are unnecessary, undesirable and unworthy of resources, it is also a scientific nonsense.
Pre-natal genetic screening and genetic engineering could never eliminate disability because only a small proportion of disability is genetic anyway. As much as 85 per cent of adult disability is caused after the age of 13. And more than 90 per cent of infant disability is due to social causes such as poverty and disease - not genetic causes.2 Overemphasis on genetics obscures the more important causes of disability. Malnutrition produces one in five disabilities in the world today. Physical abuse, industrial accidents, environmental pollution, stress and exhaustion are other major contributors.
So social attention and resources are being deflected into medical technology and professional salaries when they could be providing nutrition, social support and other low-tech strategies to minimize disability or to cushion its impact.
The perception of disability as an individual problem - or a personal tragedy - is very convenient for able-bodied society. If disability is bad luck then there is nothing much society can do about it - apart from offer pity and charity.
Charity may make the donor feel good - but it reinforces a sense of dependency, of worthlessness, of invalidity. If disabled people need charity it is because they are poor. Living costs are about double if you are disabled - though few governments recognize this when they hand out disability pensions. Disabled people are also poor because it's harder to get jobs. Equal-opportunity rights may be inscribed in law in some countries - like the UK- but employers are rarely punished for failing to comply.
Not surprisingly the disability movement in the North has responded to all this by rallying around the banner of Independent Living. This advocates that disabled people speak for themselves and use their collective power to get proper housing, accessible transport, equipment or care.
This is fine in rich countries. But it does not mean very much to the poor disabled person in Bombay or Bogota or Bulawayo whose main problem is getting enough to eat. Zimbabwean activist Joshua Malinga is blunt about it: 'While people in the rich world are talking about Independent Living and improved services we are talking about survival.'
Many people in the Third World become disabled due to a lack of adequate safety measures and because poverty prompts them to take risks. The poorer they are, the more likely peasant farmers are to try and increase their crop yields by using cheap chemical fertilizers that can cause disabilities. So disabled activists in these countries focus on nutrition, land rights, training and income generation.
Talking about a revolution
Bridge-building between disabled activists in the North and those in the South may not be easy. But Joshua Malinga thinks they can unite by launching a concerted attack on the charity ethic. 'Your governments and agencies are supporting charity in the Third World. We don't want charity! It's not natural. It's not development. It takes away self-determination.'
But is this practical? Few developing countries allocate resources for their own disabled people - relying on foreign agencies. Getting a disability budget out of debt-strapped Third World governments is like trying to get blood out of a stone.
Supporting radical groups of disabled people that are emerging in Third World countries - as opposed to conventional charities for disabled people - can help. But in the long term more fundamental changes are needed to alter the global economic order which forces poor countries to export their food and resources at low prices.
There is much that disabled people in the North could learn from their colleagues in the South. This is especially true when it comes to looking beyond single-issue politics. In South Africa, for example, the disability movement is linked to the anti-apartheid struggle because so many people have become disabled by police bullets.
And the international disability movement has tremendous potential as a movement for social justice. At the recent Independence 92 and Disabled People's International conferences in Vancouver I was amazed by the energy people put into finding ways of communicating with each other over the barriers of differing disabilities, culture and class. Imaginations were being stretched, sensitivities heightened and circles of concern extended.
For example, the more pedantic speakers who had used complex language found themselves having to rethink after being taken to task passionately and articulately by people with intellectual disabilities. Lesbians, gay men and people from ethnic minorities explained to straight whites about double or triple oppression. Mental-health survivors and people with Aids explained how they were also disabled by society. Others spoke for those whose voices were not being heard - disabled refugees, children. Here was a movement whose values could benefit us all. It embraced difference and challenged the tyranny of normality that harms all minorities. Above all, it was a movement of revolutionary vigour.
'We are a people,' said one speaker, 'and we demand our rights.' Those include the right to represent themselves and to be involved in all decisions concerning them; and the right to full equality in law and opportunity with non-disabled people.
The conference coincided with the end of the United Nations' Decade of Disabled Persons. The United Nations' input in the past decade has been minimal. But at least it has recognized disability as a human-rights issue. Through their umbrella organization - Disabled People's International - disability groups around the world are trying to get the UN to turn its talk into action. That means putting resources into disability, monitoring human-rights abuses and taking action against offending member states...
And how can able-bodied people become allies of disabled people rather than oppressors? By listening, for a start. All of the articles that follow are written by disabled people - so here's a chance.
1 Michael Oliver, The Politics of Disablement, Macmillan 1990.
2 Marcia Rioux, paper delivered at Independence 92, Vancouver, April 1992.
Anne - breaking through the barrier
Anne McDonald was 13 when therapist Rosemary Grossley started working at St Nicholas Hospital in Melbourne. Doctors had judged Anne - who has cerebral palsy - to have a mental age of one. She was force-fed and spent her days lying on the floor. She could not speak it was assumed that she could not understand either. In front of her, nurses would speculate upon her imminent death.
Rosemary, however, was determined to communicate with Anne and as she did so she began to discover how wrong the medical experts had been - and not only about Anne. It's Anne's story to tell:
'To be imprisoned inside one's own body is dreadful. To be confined in an institution for the profoundly retarded does not crush you in the same way: it removes all hope. I went to St Nicholas Hospital when 1 was three. The hospital was the state garbage bin where very young children were taken into permanent care... if they were disfigured, distorted or disturbed then the world should not have to see or acknowledge them. You knew you had failed to measure up to the standard expected of babies. You were expected to die... Vital signs showed that your title was 'human': but that did not entitle you to live like other children. You were totally outside the boundary which delineated the human race... When Rosie suggested I use my tongue for 'yes' and 'no' I was excited by the possibilities. For the first time I was able to chose some of the things that happened to me. Until Rosie came no one tried to check if we understood anything.
Being disabled you experience total inactivity for such long periods that you become skillful at filling time. I would calculate things which I knew existed but whose values I did not know. Seeing the occasional television program gave me some ideas. The Bronowski Ascent of Man programmes were critical in bringing me in contact with scientific method. In St Nicholas there was not much call for it, but it stopped me becoming intellectually barren. When Joey [another child labelled 'profoundly retarded'] taught us about fractions, suddenly everything started to come together. I started doing arithmetic for fun. I also tried to work out some constants. I had a go at the speed of light, using the distance of the moon from earth (which had been given coverage during the Apollo missions). I made a stab at calculating the miles per second. I could not convert, because I had no idea how many feet there were in a mile.
Bronowski covered Pythagoras and I had ample opportunity to think about the implications. The hospital nappies were no square, and every time the nurse had to fold a nappy they had to square it first. I became aware of symmetry and its importance in geometry. To calculate I used a crude abacus based on the clock. I used to work in base twelve. I stored the units, treating them as minutes; the twelves (stored on the hour numbers and the grosses I stored on my cot bars...
Communication between [the disabled children] took a long time because we had to repeat things. Watching each other was vital to understanding our speech: I could understand a lot from other children's mime. We all used facial expressions to give emphasis... Sometimes I was hit because I talked with other children, and the nurses thought I was screaming without reason. Since we were always with nurses, opportunities for speech were few.
Until Rosemary Crossley came to St Nicholas we did not know that there were ways for non-disabled people to talk with us. Once Rosie started teaching me to spell I tried to teach the others. I did not tell Rosie about our speech because I did not think she would believe it. "Normal" people take it for granted that if you are incomprehensible to them then no one can understand you.'
It took five years of bitter struggle against the medical authorities - and finally a court case against them - before the 'profoundly retarded' verdict was overturned and Anne gained the legal right to make decisions about her own life. She left St Nicholas and went to live with Rosemary and her partner Chris. Anne is now studying humanities at Deakin University and book on technology and people with disabilities.
Anne's story is told in Annie's Coming Out by Anne McDonald and Rosemary Crossley (Penguin, 1982).
This special report appeared in the disabled lives - difference and defiance issue of New Internationalist. You can buy this magazine or, to get stories like this one through your door every month, subscribe.