Vulnerable groups lose most when the power of the state diminishes

Sweden's leading ambassador in matters relating to the needs of disabled persons, former Minister for Health and Social Affairs Bengt Lindqvist, has left his post as the UN's Special Rapporteur on Disability after more than eight years. He has long been a leading representative of the Swedish disability movement.

At one time he was a cabinet minister in Olof Palme's government, the world's first cabinet minister with a visible disability. During his eight years in UN service, Bengt has walked fearlessly down the paths of both democracy and oppression, armed only with his white cane as a guide. He has visited both slum districts and the corridors of established power; he has wandered with his cane and his escorts through cold, draughty institutions where the emptiness of the inmates´ lives echoed in the desolate rooms.

What and how does he see on his inspection tours?
The answer can be found in his reports. He sees with his experience. He sees through the eyes of others. He sees through voices that come close and whisper in confidence. He sees in the denial of those he speaks with in the government offices. He sees in the odours of neglect of people kept shut up in institutions. He sees what he needs to see, with more acute powers of observation and greater
clarity of vision than most.

It is his last day on the job as a UN official. It is 9 o'clock on a winter morning. The office he leads us into on Regeringsgatan in Stockholm is dark. Bengt makes no move to turn on the light fixture in the ceiling or the one above his desk. Why should he? He can see anyway. In the darkness it is we who are blind. We ask him if we can turn on the light so we can make notes during our conversation.

He summarizes his eight years in UN service for us:
"I have had the privilege of promoting the rights of persons with disabilities with the support of an unusually good and effective UN document, the Standard Rules on the Equalization of Opportunities for Persons with Disabilities. I believe that perhaps my most important role has been to serve in an advisory and explanatory capacity in different countries. Many have said that I have been a catalyst.

NGO members have often said to me: "We never got to talk with this minister before, but now that you're here we can." Bringing parties together and getting them to talk sensibly on the basis of a UN document that serves as the foundation for a strong ideology, that has been important.

The Standard Rules are a tribute to democracy. They are very adamant on the need for strong and outspoken non-governmental organizations. It has been easy for me to work with this fine document. I have believed in every part of it."
Today Bengt will spend the day putting the finishing touches on the report from his final inspection tour. It was to Asia. One of the countries he visited was Vietnam and its capital Hanoi, where power is centralized and the government and the parliament are located. Like many other Swedes, Bengt Lindqvist has a special relation to Vietnam after sympathy actions and demonstrations during the country's war of liberation against the USA.

"The living standard was slightly higher than I had imagined." But the legacy of the communist period in the disability field lives on. Segregation is colossal and systematic. That is one of the things we will try to break up now. There are still very strict rules for collaboration. National organizations cannot be formed freely in Vietnam. They have to stand under government control, even in
the disability field. The disability movement is very weak." "But," he notes with a gesture of resignation, "that's no different than in the former Eastern European communist states. There was a very systematic segregation of people with disabilities in the entire Eastern Bloc.

Either you're productive and able-bodied. Or you're not. That was the watershed that determined people's lives in Eastern Europe - and it still does." Disabled persons were regarded and discarded on collective grounds. They were not considered productive. Children were taken from parents so that the other members of the family could work at full capacity in production. The disabled persons were put into institutions when they were small children and stayed for the rest of their lives. The institutions were of the communist era were abominable.

What is shocking is that they still exist and are just as abominable. You just have to go out into the woods in any eastern country and there they are, hidden from view.

In the Czech Republic, which is supposed to be so progressive, there are 70,000 disabled persons in institutions. Some live like cattle. I have been in 17 of these countries, and I estimate there are still at least two million people in such institutions
in what we call the Eastern Bloc."

We speak about Swedish indignation at the TV programmes about Romanian orphanage children that were aired at the time of Ceausescu's fall and reflect on today's indifference in the face of similar reports.

Bengt says:
"The international attention helped that time for awhile, and lots of money poured into the orphanages. But as usual, when the spotlights dim public interest fades and people lose interest. Still, material conditions for children in general in the institutions in Romania have improved. But there are more children in the institutions today than when the stories came out in 1989. Many thousands more.

The basic problem is that parents don't have any obligations under their parental code. Parents can simply give away their children. Now they are in the process of changing the legislation, but the wheels are turning very slowly. And the children kept in the institutions for the disabled aren't even included in the discussions. Over the past 70 years, these children have been kept out of the public eye, so Romanian society doesn't view them as being fully human. They are members of an inferior minority."
Romania is one of the countries that are negotiating for membership in the EU.

Recently, ten other Eastern European countries were granted EU membership from 2004, even though most of them have a long history of oppression of disabled persons.

"Both the UN and the disability movement in Europe urged our negotiators to bring up the issue of persons with disabilities and their situation. But they didn't, since the negotiators never got the facts they needed. Nowadays there is a fairly high awareness in the EU about the real situation for disabled persons. But the groups that are already sitting in these terrible institutions
have been forgotten. They have been left out. It's a disgrace that no one talks about. The institutions are discreetly given a little money from the national budget and kept afloat in this manner.

Those who run the institutions want to run them the way they have always done. And the people who have been there all their lives don't know anything else. They can't leave the institutions. But it should be possible to make things better for them materially. I have visited institutions where the inmates don't even have clothes. They sit naked in unheated buildings."

Bengt tells of an episode from a visit to one of these countries. "It was our third visit. We were at a reception with lots of people, from both the central government and regional authorities and organizations. A man came up to me and wanted to have a quiet word. He was very insistent, saying he was a doctor and it was about an institution he knew about."
He said: 'You have to bring up this institution with the state secretary when you speak to him. It's located up in the mountains and is designed for twelve intellectually disabled persons. But right now 84 persons live there and there are only two full-time attendants. The institution has no running water and it's two kilometres to the nearest well. The windows have no panes. It is very cold in the
wintertime and someone always dies during the cold season. You can't let them get away with this, because they're not doing anything about it.'

Later I got a minute with the state secretary, and of course I brought this up. He replied: 'You're right. I know about this, but the problem is we have hundreds of institutions like that.' He made no attempt to cover it up. The strange thing was that the issue had not been raised before, either by the government or by the organizations of disabled persons, even though everyone was aware of it.'"

Bengt Lindqvist adds that fortunately we don't have these problems in Sweden. "We dont lock up disabled persons in institutions. But we have other problems we don't talk about. A great deal remains to be done when it comes to job opportunities for persons with disabilities. A law forbidding discrimination against disabled persons in the workplace recently entered into force, and we have the Employment Promotion Act from the 1970s.

But the general impression is that it is very difficult to start enforcing the new law. Perhaps I'm being unfair, but I think we're being complacent here. People say: 'We've already solved this problem.' But we haven't. I don't think either individuals or organizations, including the trade unions, are using the new law to pursue legal action with any force."

In an international perspective, the global objective of disability policy is full participation and equal opportunities. As long as there are dramatic differences in the employment rate between disabled and non-disabled persons, we can't talk about full participation.
"We are far, far behind. How far I can't say, since it has to do with how we define disability. We have to clarify whether it is enough to subjectively consider oneself to have a disability, or whether we need to have more objective criteria.

But there is no doubt that the employment rate among the traditional groups of disabled persons is so low that it can only be described as a total failure. And this is in spite of the fact that by international standards, we in Sweden have pursued a very wide-ranging and ambitious labour market policy during the post-war period. When there aren't enough jobs for everyone, market forces take over the recruitment principles. In the marketplace, the most attractive candidates get the jobs. When we wrote the Employment Promotion Act, we had a very fine ambition that recruitment in both private enterprise and government should reflect
the composition of the entire labour force.

But this has never been true.
Every enterprise should have a greater number of persons with disabilities among its employees. When this is not the case in either private enterprise or government, you get the big differences we have today," he says. In today's labour market it is particularly difficult for disabled persons to find jobs. Many people draw the conclusion that existing public policy instruments have missed their mark and that it is therefore time to abandon them. But Bengt doesn't agree with this.

"Instead we can say: We have got this far thanks to the instruments we have. If we want to get farther, we have to try harder. We have to confront and combat elitist recruitment principles. That's not easy. If I try to put myself in the shoes of a private employer, it's so ingrained that you choose the most attractive candidates for the job. It's very difficult to get it to work in any other way.
And how do we make persons with disabilities more attractive? This can be done to some extent by providing support, redesigning the workplace, supplying assistive devices, rehabilitation, and so on. But we can't do more than that, and if the employer is still hesitant, the choice will fall on someone without a disability.

That's the way it will be as long as the law doesn't require an employer to have a certain proportion of disabled persons in relation to the size of the workforce. I don't like quotas, but it would be interesting to try."

Bengt doesn't think that the provisions of the Employment Promotion Act can be applied here either. "I would have liked to see an enforcement of the Employment Promotion Act when the labour market authorities find that an employer is flagrantly practising elite recruitment. Then they have the option of calling the employer to discussions. They should be able to demand a change in
policy, and if they don't get it the last resort is to compel compliance with the law.

But this has never happened, not in one single case, even though the labour market is clearly discriminatory. We didn't dare, nor did we have the political stamina. We didn't want to go so far to guarantee employment for these groups," he says with disappointment.

When the proposal for an Employment Promotion Act came, with one hundred percent backing from the disability movement, they thought that the government had finally realized what was needed. They proposed vigorous measures to bolster AMS (the Labour Market Board), with 100 new specialists for recruiting disabled persons.

"I still remember that they said that if such a specialist at AMS arranges a job for three disabled persons in a year, this would pay for his own salary. But nothing came of this."

Bengt admits that he feels frustrated when he meets his political friends and brings up issues relating to disabled persons.
"They don't say anything. I think they see me as a blue-eyed idealist. Some people like my ideas, but many think those old ideas have long ago foundered on the rocks of reality."

He still gets upset every time he reads newspaper articles or sees news reports on radio and television about conditions and living circumstances for different groups with disabilities. People with an intellectual disability are a neglected group with little hope of meaningful employment. Some municipalities that employ intellectually disabled persons in simple tasks have gone so far as to take
away their day's wages of perhaps 15 kronor (a little less than 2 euro) to save money.

Bengt says: "The intellectually disabled are a group with highly varying capabilities. At the bottom of the performance ladder are those who are so severely disabled that they just can't manage any kind of organized activity. On the other hand, some kind of daily structure and meaningful activity is incredibly important even for a person with the intellectual capacity of a three-year-old. A whole
scale of work activities must be available. From simple tasks to slightly more advanced tasks, then perhaps production in a sheltered workshop, and then more integrated forms of employment out in society.

Who ends up where depends on how well the system works. We can always hope that it permits the individual to progress from a lower level to more productive occupational levels. The integrated options are incredibly important, and I think a lot remains to be done there."

He has the following to say about Samhall:
"Sheltered workshops such as Samhall tend to be a mirror of problems in the open workplace. The greatest problems are people's ability to stick to a work schedule, to interact socially, to concentrate, and to have relations with other people. People who are disabled in this respect have been gathered within Samhall.

"It turns out that it isn't the blind, the deaf, the physically handicapped, but rather usually people with psychological problems and substance abuse problems." But exclusion from the labour market is the fate of most groups with disabilities. A person with a physical disability who has been injured in a traffic accident but is otherwise still productive is hardly desirable either.

Bengt agrees and observes:
"Often the prospect of a job stumbles on problems with workplace accessibility. As well as on economic issues. Naturally, a workplace must be made accessible if it is not already so. We have to learn to make the workplace accessible from the start and not create barriers unnecessarily. Failure to build with accessibility in mind is a form of collective discrimination against all persons with mobility problems.

We have both a national action plan and laws to enforce this. Sweden got its first accessibility law in 1967. And yet half of the country's comprehensive schools are not wheelchair accessible. This is a disgrace. Many of our laws in the disability field are not complied with. They are not respected. This is an all-tooclear indication that the question is not being accorded any importance, and it is an affront to those of us with disabilities."

Creating greater diversity in Sweden requires vigorous action, says Bengt, and a much more active government.
"The welfare philosophy which we have had and which I advocate must form the foundation. I mean everyone's equal value and the solidarity this leads to. That we as individuals truly grant each other the right to a good life. To manage this in a complex society such as ours requires active government. The state, which represents our collective democratic will, must pursue a policy that makes this possible. This policy must eliminate all those obstacles that stand in the way of a society with diversity and equality. The state must
disseminate information and stimulate debate regarding these obstacles and take appropriate measures. We citizens must rally around and defend these principles.

The freedom of a single individual is sometimes restricted by the freedom of others, and then it is important that we recognize this and grant each other the right to a good life in fellowship with others. A strongly governed democratic state, with clear and distinct ambitions, is capable of creating a society with diversity and equality.

The government must not abdicate its responsibility. And we as citizens must become involved. We can't just turn our backs in indifference."

During the year to come, Bengt Lindqvist will have Sweden as his platform after leaving his UN post. Some work still remains to be done, and his proposals have not yet been dealt with in the appropriate UN bodies, but he will have an opportunity to become involved at home in the European Year of People with Disabilities.

He is very happy about the choice of theme for the Year of People with Disabilities in Sweden - Human Rights. "I have worked with human rights as a UN rapporteur. And the big thing that has happened in the past four years is that we have had an international breakthrough for the view of the disability issue as one of human rights."

This is how he describes this breakthrough:
The UN's Universal Declaration of Human Rights was written with all human beings in mind, but the disability aspect was forgotten. Talk of discrimination and segregation was exclusively concerned with discrimination on the basis of race, religion or gender.
This neglect of the disability dimension has since continued. None of the big conventions based on the Universal Declaration of Human Rights - with civil and political rights on the one hand and economic, social and cultural rights on the other - mention the disability dimension. You could say that the whole sense of exclusion experienced by disabled people has not been regarded as a human rights violation, but merely as a natural consequence of being disabled."

The disability dimension continued to be neglected in all the big conventions that are based on the Universal Declaration of Human Rights. We in the disability movement objected to this. It was important to include this dimension. During the Year of Disabled Persons which the UN proclaimed back in 1981, we demanded that the UN recognize discrimination against disabled persons. This was not done immediately, but the following year a passage was included in a World Programme of Action Concerning Disabled Persons that was written as a consequence of the Year of Disabled Persons.

The formulation stated that the relationship between disability and human rights should be studied. But now, 20 years later, a definitive breakthrough has finally arrived. The UN is in complete agreement that a disability dimension must be built into its monitoring of human rights."

The question is currently being investigated. But the Commission on Human Rights brought up the issue of disability in all three of the years 1998, 2000 and 2002. A very definite standpoint has been taken that disability is the responsibility of the UN's Commission on Human Rights, that we must build a disability dimension into all monitoring.

The breakthrough also led to a proposal for a special convention on the rights of persons with disabilities. "This work has just begun," notes Bengt Lindqvist. The fact that the disability dimension is now included as a human right is the clearest proof of the success achieved by the UN's Special Rapporteur.

But success hasn't come easily. Discrimination against persons with disabilities is nothing anybody wants to admit responsibility for. According to Bengt Lindqvist, the rights of people with disabilities are violated every day.

"These are direct violations which may be concerned with inadequate care, self-determination, personal integrity, etc. But also the right to education. Only a fraction of persons with disabilities have an education. And this is precisely the same type of rights violation and discrimination that occurs on other grounds. It is also the reason why I suggested to the Commission on Attitudes towards
Persons with Disabilities (otherwise known as the "Lindqvist nine") that we should amend the Swedish Constitution and recognize disability as one of the dimensions.

There has long been a well-intentioned recognition of the fact that human rights also apply to persons with disabilities. But when it comes down to individual cases, it is no longer a question of human rights. Then it is a question of resources, or that something has been overlooked in the planning," he says critically.

All the time there is an alienation, an isolation caused by discriminatory acts against persons with disabilities. This is primarily due to ignorance, or the attitude that the disability movement is asking for the impossible.

"We are told that discriminatory forms of treatment should not be regarded as human rights violations. To that I reply that the blind have never demanded to be able to enjoy Rembrandt's paintings, since we know that we can't see them. But we do demand to be able to read the same newspapers as others read, because that is possible. And if we don't get to do that, it's a huge violation of our rights," he says.

When Bengt Lindqvist compares the Swedish perspective on disability issues with the international one, he sees several differences.

"Nordic disability policy is a part of our overall welfare policy. We have built up paratransit services and home help services and assistive technology services on the basis of common sense. In the Anglo-Saxon systems, especially in the USA, they work from the opposite direction. Based on a human rights perspective they try to compel progress by taking legal action against those responsible - usually the state.

The question of which approach works best is one of political judgement. We base our system on solidarity. This has given our disability policy a much greater breadth than, for example, in the USA. Their system favours strong individuals who are capable of advocating their cause. And of course there is something very appealing in that way of looking at things, in "knowing you're right."

But most disabled persons don't have the resources needed for effective litigation and advocacy. So I think our system is better.
But we obviously don't believe that ourselves, since we are increasingly changing our way of doing things to suit the rules of the market economy. The more we allow the market to rule, by deregulating and reducing the power of the state, the more vulnerable our groups will become."

The growing demand for antidiscrimination laws in Sweden has a lot to do with this general trend. There is a connection between what is happening in society at large and the ability of vulnerable groups to assert their rights. Bengt Lindqvist believes that this ability is steadily being undermined as a consequence of the shift in the political tides.

"The current political trend to deregulate and privatize puts weak groups, those who are dependent on public solidarity to be able to live a decent life, at greater risk. If this solidarity is undermined, their position will be weakened. Strong individuals - whether they are persons with disabilities, immigrants or women - will manage anyway."

During his travels, Bengt Lindqvist has had occasion to observe a broad gap between the bold rhetoric of politicians and the actual living conditions of the weak groups in society.

"This gap exists all over the world. Why it is bigger for persons with disabilities than for many other groups, I don't know. It may have to do with the fact that no one wants to be seen as making things worse for persons with disabilities. Spokesmen for the political parties claim that they are all in agreement on the disability issue. "We all want what's best." Then some of them go home and deregulate and lower taxes. Which undermines the state's ability to give support to weak and vulnerable groups.

On one side of the table are those who hold the purse strings. They are expected to follow laws and rules. On the other side are we, persons with disabilities. We are fighting for extremely important things in our lives. We have a picture in our minds of what we are entitled to. This picture is the result of what we have read and heard. We know our rights because politicians have told us what they are. We also speak among ourselves and know what rights others have who are in the same situation. And we perceive a huge gap between what the politicians say and our own reality.

You may wonder how that gap can be bridged?
As an activist on the disabled side of the table, I can demand that the politicians keep their promises in terms of support, services, assistance and aid. This is only reasonable. We are told that there isn't enough money. The politicians try to play one group
against another. It's a classic tactic of divide and conquer," he says with indignation. For him it is a question of income distribution. And as long as some people are wallowing in affluence while others are living in poverty, which isn't acceptable here in Sweden, there is good reason to think about income redistribution.

"Many people who happen to have disabilities are victims of unfair treatment from the viewpoint of income distribution. We are not the only ones who are unfairly treated. But when we are excluded from essential things in life, we must have the right to demand a fairer distribution of income. We must forge alliances with other vulnerable groups to stop the politicians from playing us against each other."

Bengt envisions cooperation with other groups who fight for the interests of their members, such as immigrant groups and women's groups, and deplores the lack of such cooperation today.

"But attempts have been made to create it. The disability movement has actually proposed formation of a solidarity group, which existed briefly in the 1990s but didn't last. Something that was really fun to be a part of happened in 1979-80. A number of
NGOs decided to conduct a joint analysis of where we stood in the question of welfare.

We wrote a white book where we described the ongoing dismantlement of our welfare. The white book became an important issue in the 1982 election. I was chairman of the group and I probably owe my election to Parliament in 1982 to this work with the white book. We could benefit from this kind of cooperation now too. We would definitely have benefited from it during the 1990s, which were difficult years. It was then our political leaders assured us that the weak groups in society would not suffer. Nevertheless, when social support systems are dismantled we know that they are the ones who bear the brunt of it."

To the question of why the disability movement hasn't taken stronger action, he replies:
"The representatives of the disability movement find it very difficult to make themselves heard above today's media buzz. They do the best they can. But what they need to do is to get the attention of journalists, whose mission is to keep an eye on the authorities on behalf of their readers, to get them to take an interest in disabled persons' stories.

Perhaps I'm a bit paranoid, but I have the feeling that the power elite is keeping the lid on things. It's a little unsettling. No one really wants to get to the bottom of this question."

Bengt Lindqvist is disappointed in the policy that has been pursued since he left the Government in the early 1990s. "I can't deny it. I'm disappointed in the fact that the Government no longer gives the same weight to their income distribution policy. There isn't a single political party that is actively pursuing an ideologically based debate on income distribution. They sporadically focus on the
needs of different groups from time to time. And that's good. But nothing is done about it. No one proposes any solutions. Many of us think it's high time for a debate on income distribution policy.

The gap between rich and poor is growing. Are we really just going to accept that? Is it an automatic consequence of globalization? Or do we find ourselves in a position where we have lost control? This is something we need to discuss. There is a risk that deviant groups will be marginalized. Those who have had to pay the price of the liberalization that occurred when both neoliberalism and the economic crisis coincided in time are the weak groups in society. If deregulation and decentralization, which in themselves are positive phenomena, are mismanaged, the consequences can be devastating for vulnerable groups. When the
power of the state and its policies is weakened, they are the real losers. This is easy to understand, since the weak groups are the ones who are most dependent on public support.

As a blind person, I couldn't live a decent life without a strong public sector. I would have to struggle to scrape by on charity. Either in a brutal form or in more sophisticated forms. And I think it's bad that such aspects haven't been brought out more clearly in the debate.

I agree with those who say that today the elite is on a collision course with the Swedish people. The elite control the media, they control politics and they control industry."

He sees a widening of the value gap as a growing danger. The elite don't seem to have anything against lining their own pockets and making more and more money. The rest of the people, who are loyal to the system, are struggling. Caught in the middle are the real losers, those who are most dependent on local government programmes.

"I am very critical of this trend. Globalization must never be an excuse for the absence of an active income distribution policy. Otherwise, the vulnerable groups in society will be the big losers. I hope that the European Year of People with Disabilities will focus on these issues in such a way that we put a stop to violations of the human rights of people with disabilities in Sweden," says Bengt Lindqvist.

The global society's view of people with disabilities will become manifest in the continued work with Bengt Lindqvist's proposal to the UN General Assembly. The proposal for new wordings has now been summarized in a supplement. Bengt has chosen not to propose a revision of the Standard Rules from 1993 for fear of watering down the document.

"But we have produced