Stuff pity!

People with disabilities want to get on with their lives. Others keep standing in the way. Dinyar Godrej explores what this can mean in the Majority World.
From New Internationalist


With his wedding date approaching, Samuel Kabue of Nairobi, Kenya, remembered a past kindness. There had been a man who had intervened when as a child he’d been run over by a cyclist. This man had apprehended the cyclist who tried to flee from the scene and then took the time to get Samuel to his mother. Later Samuel began visiting the man’s bookshop, first on his own, and then, with the onset of his blindness, with someone to guide him.

Now Samuel stood in front of him with an invitation card. ‘With all the excitement of anybody who would have been in my position at the time, I presented him with the card. I was very embarrassed by his reaction. He kept quiet for a while and then said to me, “Why do you want to give yourself more trouble in life? You are already blind, how are you going to handle the burden of marriage?”’1

In Mumbai, a disabled activist using a nom de plume began writing about sex – a fenced-off area in her life, the existence of which is constantly denied by other people. Even other disability rights activists gave her short shrift when she once plucked up the courage to bring up the subject. She was scorned for entertaining a ‘Western obsession’ and told that there were far more important things people with disabilities had to fight for in a country like India.

Also in India, Firdaus Kanga was coming to terms with what he thought was his difference. He’d been born with brittle bones which left him as a boy hesitant to break a biscuit. ‘There was something about the sound, the snap, that always reminded me of those moments when I would crack a rib or break a hip, which happened almost as often as the festivals that sprinkled the Indian calendar.’ The ‘difference’ he was contemplating was his homosexuality – a subject so taboo in polite Indian society that he had never heard anyone talk about it.

‘ Homosexuality was the different part of me that gave me pleasure, allowed me to hug my body – if rather gingerly – rather than fear it, fear the pain it brought me, an unwelcome present I could not refuse.’

In his twenties he wrote a novel, Trying to Grow, whose success allowed him to move to London. Here he was to find ‘one very special love’ – with someone who had Tourette’s Syndrome, an unexplained condition characterized by compulsive activity. ‘Sometimes just being able to sit down took him the best part of an hour. Somehow we found the comedy between that and the fact that I could never stand up. We also found a tenderness that I have never known before or since – tenderness and desire fulfilled.’

While unfortunately, for far too many people, love remains a thirst that is not slaked – with little relation to integrity of character or perceived goodness – what is remarkable is that people with disabilities are often denied at the outset the right to participate in this particular lottery of life.

In the West, this has resulted in an extensive literature of anger railing against assumptions of asexuality made about disabled people, exclusion from sex education at school, ‘protection’ from such things by self-appointed ‘guardians’ (an infantilizing concept if ever there was one), misinformation about the body’s capacity for enjoyment when that body happens to differ from the ‘norm’, curtailment of one’s reproductive rights and general disapproval when creating a relationship. ‘Stuff that!’ is the message, in short, from many people with disabilities living in the rich world who have written about their experiences. There is a herculean amount of struggle behind that position. But in the Majority World there is a corresponding silence.

It’s not that love – and its sexual expression – is not a pressing concern for people with disabilities in the Majority World. How could it be otherwise? But too many other people seem to think it doesn’t matter, or is a thing of shame that disabled people should suppress. If this treatment strikes you as less than human, you’ve got the point.

But perhaps love and sexual expression do have to make way for even more pressing concerns.

When Samuel Kabue visited England he met up with a woman with a disability, who complained to him about her Meals on Wheels service never being delivered on time. ‘It struck her as an infringement of the right of recipients to eat at the right time. As I thought about the situation in my country, my reaction to this complaint may not have pleased her. I said to her that in my country, it would not matter whether the meal was brought in the middle of the night or at any hour, it would still be most welcome. Many of our disabled people go for days without any meal, and even when they get it, it is hardly what would be called a “meal”. When you hear that people are dying of hunger in parts of Africa, people with disabilities will have died long before that.’

Blocking out ‘bad karma’
Disabled people are disproportionately poor all over the world. But in countries where poverty is not in the slightest bit relative, it robs them of all the chances that mainstream society is so intent on withholding anyway. About 82 per cent of disabled people live below the poverty line in the Majority World. The World Bank states that ‘half a billion disabled people are undisputedly amongst the poorest of the poor’ – out of a total estimated worldwide disabled population of 600 million. Survival is often their most pressing human rights issue. Death rates for children with disabilities are in some countries as high as 80 per cent – no-one knows how many of these children have been murdered.

Out of the thicket of definitions available for the word ‘disability’, the valid principle for disability movements is singular. Disability for them isn’t primarily about the physical, mental or intellectual impairments that are associated with it, but about society’s prejudiced response. Disability is a critique of social organization that seeks to exclude, restrict and put at a disadvantage people who have impairments, instead of recognizing the diversity of human beings and their essential equality. Put more simply, it is about prejudice. When that prejudice pushes you to the back of the queue in a refugee camp or denies you food when it’s scarce, it can be lethal. For example, many parties in the aid response to the tsunami had no clue how to respond to the needs of disabled people affected by the disaster and those newly disabled by it.

The social barrier faced by people with disabilities can be huge, particularly in the Majority World where activism for rights, by and large, has a much shorter history. What would it take to break down the walls? A UN working group which has the input of several Disabled People’s Organizations (DPOs) has been busy drafting a ‘Comprehensive and Integral International Convention on the Protection and Promotion of the Rights and Dignity of Persons with Disabilities’.

It has articulated a sound set of basic principles: ‘dignity, individual autonomy including the freedom to make one’s own choices, and independence of persons; non-discrimination; full inclusion of persons with disabilities as equal citizens and participants in all aspects of life; respect for difference and acceptance of disability as part of human diversity and humanity; and equality of opportunity’. This sounds just the ticket – though the US, in time honoured fashion, has indicated it won’t sign up and is encouraging other countries to follow its lead. There are, moreover, already rumblings from poorer countries that they may have problems finding resources to support their disabled citizens in realizing their capabilities.

The lack of resources argument is a compelling one, but the question that does need to be asked is whether it is being used as a justification for unequal treatment, the kind which is so routinely meted out by society at large. In recent years, the growing disability movements in the West have been reaching out to disability groups in the Majority World to lend support to their struggle for an equal claim on society.

Society needs a considerable amount of pushing before changes begin to register. Cambodia currently has the second highest rate of disabled people in the world (Angola has the highest) – a legacy of years of war and extensive use of landmines. With this recent surge in physical impairments, a corresponding cultural response might have been expected. But Cambodian society stuck fast – clinging to notions of ‘bad karma’, blaming the sins of people’s past lives for their disabilities. Oum Phen, a young landmine survivor, described the prevailing attitude: ‘People didn’t treat me like a human being. They looked down on me because I couldn’t support my own family.’ So when disabled people in the country began to organize in self-help groups (with some prompting from the British organization Action on Disability and Development), new members often felt there was nothing they could do to change society. But by working together they managed to overcome this prejudice by getting the skills to earn an income. They also targeted people who could make a difference – persuading some Buddhist monks to include scientific explanations of disabilities in their sermons to fight the grip ‘bad karma’ had on society.3

While the emergence of DPOs in the global South and their linking up with disability groups around the world is great news, there are millions upon millions of individual struggles for self-determination that must run society’s obstacle course. If you’re born with a disabling impairment in the Majority World, the chances are you’ll never see the inside of a school, let alone decide whether it’s a ‘mixed’ one or a ‘special’ one. Your parents might hide you from the outside world. You are likely to be more vulnerable to physical and sexual abuse. If you can’t express an opinion verbally, it’s often assumed you haven’t got one. You might be put through regimes of self-reliance by ‘experts’, no matter how inappropriate, and with complete disregard for your right to depend on others. If you can come through all this and be your own person, you’ll have to deal with the patronizing creeps who call you ‘heroic’.

That attitude is essentially one of pity. Samuel Kabue explains: ‘Pity has the dynamic that the one to whom it is shown is considered not only in a worse situation than the one who shows pity, but also considered inferior. This dynamic was evident in the many things people said I could no longer do even as they offered to do them for me.’ A slogan from the rights movement in the West is more to the point: ‘Piss on pity.’

‘Cabbages of the world, unite!’
People with disabilities face a tug of war to gain control over their own lives and to have their decisions respected by those who profess to be on their side. Only with such respect can true partnerships be created. This is reflected in the rights movement. A quarter of a century ago, a conference of the world grouping of charities and government bodies known as Rehabilitation International was finalizing its Charter calling on governments to ensure equal say for disabled people in their communities. The Swedish delegation proposed an amendment that disabled people should comprise 51 per cent of Rehabilitation International’s ruling body. It was turned down.

Jim Elder-Woodward, who was there, recounts what happened next. ‘All hell broke loose when this decision was announced. There were approximately 200 disabled people at the conference from America, Australia, Africa, Asia – everywhere, even the backwaters of Europe. No-one could understand the duplicity of these doctors, social workers, and officials from governmental and non-governmental bodies...

‘That night was electric. Disabled people congregated in a side room at 11pm. There was no organization, no format for the meeting, no leadership – just an angry mob of disabled people talking in groups and milling around the room. Then Ed Roberts got on the stage. Ed had poliomyelitis and at that time Reagan had not yet kicked him out of his job as Director of Rehabilitation for California. Puffing on his oxygen cylinder, as if he were Harold Wilson smoking a pipe, he greeted the noisy rabble, by crying out – “Cabbages of the world, unite!”

‘There was such an uproar of acknowledgement and then all went quiet while Ed spoke about the need to develop a separate international disability movement.

‘I had never felt, nor have since, the galvanizing energy which came from such a hungry, angry mob of disabled people. They had come from the four corners of the world and they were in no mood to be cast aside by a load of quacks and pen-pushers.’

Thus was born Disabled Peoples’ International (DPI), a cross-disability movement. As the years passed, groups spun away from DPI, claiming its leadership was too dominated by wheelchair users. So the World Blind Union and World Federation of the Deaf began pursuing their own agendas. Anxieties were voiced about the fragmentation of the disability movement. Debates, disagreements and infighting continue. Or call it democracy. An even larger international grouping of the worldwide organizations run by and for people with disabilities has emerged – the International Disability Alliance.

While these huge groupings campaign at the international level, pushing at various UN organs to do more, individuals with disabilities still square up to an almost reflex prejudice at every turn.

Disabled people have no option but to carry on their struggle to educate society. Some of the articles that follow show reasons for hope – even in the most unpromising conditions the seeds of change have begun to sprout. It’s anyone’s guess when it will finally dawn on us that equal rights for people with disabilities are not ‘special’ rights.

Until then, desperate measures may sometimes need to be taken in what has been described as ‘the last civil rights struggle’. Like when Antonio Diaz flung himself off his wheelchair to lie in the middle of a busy motorway in Trinidad and Tobago’s capital, Port of Spain, to protest his unemployed state. Cars swerved around him, he made the headlines, but nothing happened. After 116 days of protest, he had made enough of a noise to force the Prime Minister to rethink employment opportunities for disabled people and offer him a job at the National Flour Mill. Rage on.