Promoting, Dignity, Equality and Self-Determination

Washington Protection & Advocacy System

The pages of Envoy On-Line are often crammed full of legislative issues from Olympia, Supreme Court cases that affect the rights of people with disabilities, and important bills that are being debated in the U.S. Congress.  It is easy to focus only on the struggles for civil rights of Americans with disabilities, but there are similar fights for equality and justice in other parts of t he world. 

It has always been difficult to find out about disability-rights actions in the United States – the main stream media routinely ignores events arranged by groups like ADAPT, TASH, and the Bazelon Center – so if it is difficult to get disability-rights news from our own country, it is even harder to find out what is going on in the worldwide disability community. 

But we live in a new age – the information age, it is sometimes called – and the internet can make news available to everyone who can access a computer.  Disability World, an on-line magazine, is a great source of disability rights news from around the world.  

Many of the stories in Disability World are written by government officials or professors at universities.  We are often not getting the perspective of people with disabilities when we read from this magazine.  It is possible, however, to read and understand that the experiences of people with disabilities from other parts of the world are similar to the experiences in this country.  

Below is a collection to stories gathered from Disability World that help us understand that people with disabilities are united in a worldwide effort to ensure dignity, equality and self-determination. 

Table of Contents:

Community based rehabilitation programs, which in Mozambique are called community based support for people with disability, were established in this country in 1993, through the training of the so called Provincial coordinators of this program. The first trainees for this came from various Institutions and/or from Organizations such as Social Welfare, Red Cross, Associations of People with Disability, Education and even from the communities. They took a nine month course divided into modules of three months each with different contents about how to deal with people with disability within communities, with strong emphasis on utilization of existing local resources.

The program was planned and implementation initiated by the recently established Ministry of Women and Coordination of Social Action through its Provincial Directorates, nevertheless with the involvement of other sectors as mentioned above.

Trying new models

The main objective of this program was to shift from the former model practiced in the disability area by the Social Action Ministry, and to adopt the preferred practices of maintaining the person in his/her family and in the community as well. At the same time, the aim is to try to transfer the necessary knowledge to these communities in order that people for themselves can identify problems of this social group and try to find solutions using the existing local resources.

On the other hand, the program was established in order to change negative attitudes towards people with disability.

The long range plan is to gradually transfer management responsibility to the respective communities, so that the role of the Ministry of Women and Social Welfare can be fundamentally to "enable" or provide capacity to communities, as well as providing support and monitoring services.

The initial idea was that people with disabilities themselves would take an important role on the management of this program, after receiving training for this responsibility through the disability associations. Therefore, the Ministry of Women and Coordination of Social Action always tried to motivate the creation and development of the Associations of and for people with disability.

Ten years later

Now, nearly ten years later, the program has been extended to some degree throughout the country, however with some differences in terms of strategies, methodology and developmental levels in the various Provinces and regions of Mozambique.

Introducing human rights concepts

According to a preliminary report, one result of this substantial support of disability programs in Mozambique for more than ten years, is that the community based support program has managed to re-conceptualize and promote the problem of disability as a human rights issue.

In this regard, many actions were undertaken within the scope of changing attitudes, and in fact, we can observe that in many regions throughout the country people changed the way and how they see and understand people with disability, and their role within their families and even communities as well.

Significant progress observed

Many children and even adults who before were hidden away in houses -- they can now enjoy life with non-disabled people. Of course, in these communities we still face a lot of taboos and different levels of understanding about how to interact with and support people with disability in cases of needs. It is a question of knowing exactly what to do in order to promote the development of this social group. At last, it seems that people within the local communities are more aware of the importance of opening full familial and community integration for people with disability, and also to enable them to achieve full and active participation in the society.

During visits to the families with children with disability it is possible to see some aids and equipment developed on the basis of local resources which they (community based support workers) use for mobility training for children with difficulties in movements. In many cases, we can see they have succeeded in improving the physical and mobility development of these children.

Mobilizing support for school-integration

In another sphere of activity, the community based support programs for people with disability have contributed substantially to increasing awareness of the need for pre -school and school integration of disabled children. The programs have succeeded in identification of the children's needs, in mobilizing parents to allow their children to participate in the schools, and in sensitizing teachers to include children with different types of disabilities in their schools.

Therefore, this program has helped to firmly establish inclusive education initiatives which started about four years ago, in terms of awareness raising to the families so that they will take actions to help their children with disabilities to obtain an education.

Employment - the continuing challenge

One of the greatest challenges to this program is that in fact it did not manage to accomplish much in solving the situation of extreme poverty which faces the majority of adults with disability. They continue to need some kind of economic integration through facilities on the employment market or through self-employment schemes.

Some still weak links

On the other hand, the program is is aimed at the motivation of people with disability to set up their Associations, according to their interests and different categories of disabilities, in order that gradually, these Associations and other interested people can then directly become the implementers and managers of this program. At this moment, this is not possible because the existing Associations are still very weak, particularly at the grassroots level which means that the Ministry of Women and Social Coordination will continue to play this role for a longer time than intended.

A Provincial experience

One interesting experience of the community based support program for people with disability has been developed in Manica, one of the Provinces in the Centre of Mozambique. While the majority of the Provinces develop the program through volunteers, in Manica they decided to create local nuclei within the communities where the majority are comprised of people from Social Welfare Ministry, technicians from Health, Education, community leaders and traditional healers.

The idea is a nucleus will deal with all the needs and problems in the community including ones of people with disability and of their families.

The curious aspect of this situation is the existing combination or balance in practices between modern and traditional medicines. I had a long dialogue with a traditional healer who has a big space with many houses, where he admitted about 24 persons who are mentally ill to receive spiritual treatment towards recovery.

According to this traditional healer, in the cases where the individuals present anemia or other illness which can only be treated at the hospital, he takes them to the hospital but in addition continues to give them spiritual treatment to reduce the mental illness.

In the case of epilepsy, the traditional healer says that he is aware that this is a chronic disease, so he only gives them medicines prepared from roots of some plants, just to reduce attacks, and counsels them not be marginalized because of this disease.

When presented with someone who has paralysis, the traditional healer says that he gives some roots and leaves of plants to the " patients," to help make the body stronger.

It was interesting to note that in the community where this traditional healer lives and does his work, he is given a lot of trust and is very respected by people who say that he has been helpful to a lot to people not only from Manica Province, but also from other Provinces, especially with the treatment of mental illness and in the prevention of secondary effects of disabilities.

Next: from darkness to light

As we can see, this community based support program tries in fact to be a community program and also to bring out problems within the community, nevertheless, there is a need of people with "know how" to transfer more knowledge to the local levels, so that they can work with the necessary light and not in darkness. There is a wish in the community to do a lot of things, but there is little knowledge or experience, and probably limited resources like bicycles to use to make home visits.

On the other hand, there is a need of strengthening those nuclei and the necessity of increasing the participation of people with disability themselves and their families in running this program. Then they will feel it is their program and therefore that its implementation and management depend fundamentally on them.

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"Flexible jobs" is a project mainly based on the Norwegian emphasis on strengthening job-related services to people with psychiatric disabilities. It is a labour market measure with an attached follow-up service for the participants and includes a wage-subsidy paid to the employer for a period up to 5 years.

The main purpose of the project is quite widely defined: Is to improve the public employment service offered to job-seekers with chronic health problems often causing a reduced and variable work-capacity. Norway has a long political tradition of an active labour-market policy, saying that all persons being able to do some work, part-time or full-time, shall have the possibility to do so ("the working-line"). The local offices in the Public Employment Service shall have information, counseling and various kinds of labour market measures to serve the job-seeker on his/her way to get a job. This may also include formal qualification if needed.

In our experience, success in the vocational rehabilitation field is more likely if the applicants have a stable work-capacity, and are able to stay at work for a fixed time per day. If a person has a chronic disease or condition, the expected work stability is often difficult to comply with. For the employer though, stability is of great importance to get the job done. It is often said about these job-hunters that they are "too sick to work, but still too well to get a disability pension". For the Public Employment Services it is crucial to learn more about the special needs of the potential workers and the employers to make a successful job-placement possible.

Long-term objectives of "Flexible jobs"

The long-term objective of "Flexible jobs" is therefore to increase the opportunities these job-hunters have to get a job according to their qualifications on the ordinary labour market.

Furthermore, the project hopes to contribute to improved competence and better methods in the day-to-day services given to this population.

For the project, the target groups consist of mainly job-hunters with mental, joint or muscle related health problems. These diagnoses are all focuses concerning chronic disease and variable work capacity and constitute the fastest growing diagnoses among the vocationally disabled job-hunters in Norway. In Norway, more than 60% of the total number of people under our vocational rehabilitation program (about 70, 000) have one or the other of these diagnoses. Not all of them though experience unstable work capacity.

The project program consists of 250 temporary jobs (placements) on the ordinary labour market. In the program the project leaders are working on the basis of:

Improving the public sector opportunities

In addition to implementing the various elements of the project through cooperation between the project leaders, the participants, the companies and the public service-sector, the project leaders are all supposed to focus on improving the Public Employment Service on three main areas of development:

1. Strengthen relations to employers by marketing our services and the job-seekers, 
2. Establishing and maintaining "customer relations" and mapping the employers needs
3. Adapt, organize and follow up the work-situation and coordinate the various public services.

Planning & leading the development project

The development-project is planned on the basis of 5 years and followed up by 6 full-time, project-leaders who are responsible for setting up, managing and developing the project in different regions. Approximately one full position has been created in the Directorate of Labour to administrate the regional projects, to document and follow up the project, and to review and accept the regional reports and plans. Joint activities for the project-leader-team, such as relevant seminars, lectures and courses, status- and planning meetings and more are also organized. There are also established reference groups centrally and locally to secure participation and implementation from the organizations of the employers, public authorities and the non-governmental organizations representing job-hunters.

Intermediate results

Approximately 250 places either in private or public sector have been established after one year of the total five years project time (2000-2005). All of them are to be found on the ordinary labour market. The project will be evaluated after two and a half years, and then after five years by an external evaluator, when the project is ended.

Experience so far tells us that 14 out of about 50 persons having left the project, have found ordinary jobs. For some of the participants the health situation made it necessary to once again undergo medical treatment. Furthermore, it seems easier for our job-hunters to apply for a job in a private firm than in the public sector. This is partly due to the job contents of the public services, which often require higher formal qualification, less flexible regulations for appointment and a less flexible budget situation. The jobs for participants in this project are usually found in the service sector, in small private companies.

The majority of the participants are women, but the number of women starting a job is remarkably low. The male participants are relatively younger than the women; 64% of the men are under 40 years of age while the female average is between 39-49 years of age. The difficulties in obtaining suitable jobs in the public sector are in some cases affecting the possibility of success for the many women who want a job in the health or social sector.

Wage-subsidy can be important for employers

The project so far has shown that vocational rehabilitation for these job-hunters takes time, the participants need counseling and even training in the process of finding the right employer. The employer on his/her side needs reassurance (security) that the working relationship is being followed up and maintained during the life of the project. For some employers the wage subsidy is also important when giving the participant a try. The most important thing though for the project-leaders is to make individually adapted adjustments for the participants and to make sure that job conditions and job expectations are made clear for both partners. Such adjustment may require a special agreement on working hours, for example. For further information: hmf@adir.aetat.no

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"Achievements and Future Tasks after Decade"

For the last ten years, the Japanese government has strived to realize "full participation and equalization of persons with disabilities" and the results are quite successful.

Social change

Firstly, there have been marked changes in the attitudes and activities of persons with disabilities themselves and the related organizations. People have begun to come out and participate in social activities, express themselves, and get involved in organizing various activities. As a result, they are now more frequently seen and heard on the streets and through the mass media. Through the activities by organizations for persons with disabilities, people with various disability types have begun to deepen mutual understanding by working together in new fields such as research work on governmental policies and social action. However, there is a constant need for the participation of young people in these activities, and those with hungry spirits and energy are always sought.

Legislative advances

Secondly, in terms of legislation and governmental policies, there has been an increasing improvement brought about by the establishment of the Disabled Persons' Fundamental Law, which "examines" conditions restrictive to disabled people, revises the laws on people with disabilities and promotes barrier free opportunities in areas as architecture, transportation and communication. A problem exists in Japan, whereby laws related to people with disabilities do not state "rights" and "duties" in detail and lack in legal and executive force (unlike the Americans with Disabilities Act). This is underlined by the fact that there are still inadequate municipal plans for persons with disabilities to improve their welfare or opportunities in education and employment.

Thirdly, in terms of public awareness and social environments surrounding people with disabilities, "discrimination and prejudices" are generally eliminated step by step. But there are still many problems to be tackled, such as complaints against construction of a welfare facility for disabled people.

"Post-Decade" Aims

Firstly, there should be firm and clearly delineated principles in national legislation. Every law should state "duty provisions" and "penalty provisions" clearly. This movement to amend the present laws has to be carried out in relation with the "United Nations International Covenant on Human Rights."

Secondly, local governments should promote plans to improve the welfare of people with disabilities to enrich their secular lives. Of particular importance is the preparation of "contact persons" in towns and villages before the supporting system starts next April.

Thirdly, disabled people's movements should more actively involve young people in order to bridge the generational gap. Also the establishing of organizations for disabled people at the prefecture level, based on a Social Participation Promoting Center in each prefecture, is sought. Moreover, by studying the history of disabled people's movements for more than 50 years after the war, establishing a "Library of Bulletins issued by Organizations for People with Disabilities" can be considered as one of the possible ways to learn from the past.

Building Bridges

Fourthly, the relationship with people with disabilities and related organizations in Asia and the Pacific area should be further enhanced. In October this year three international conferences are going to be held in Japan. Realizing their responsibility at these opportunities, the government is requested to provide more support in the field of disabilities through ODA and JICA. Private sector cooperation is also expected through the education of people and establishing foundations to promote exchanges. The aims and objectives of disabled people and experts in this field must be assimilated and presented at the "Osaka Forum", which aims to build a bridge uniting people with disabilities in the countries of Asia and the Pacific region. Recommendations from "Post-Decade Plan" should be acknowledged and adopted by the government at the "ESCAP Conference at Lake Biwa" in Shiga prefecture, Japan.

For more information about "Osaka Forum", visit http://www.normanet.ne.jp/~osakaf/

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The recent case of Diane Pretty made big headlines in Britain and internationally. The 43-year-old woman who had motor neuron disease and used a wheelchair fought a very public battle in British courts in the hope of having her husband granted immunity from prosecution if he aided her in killing herself.

When she lost at every stage of appeal in her country, her lawyers took her case to the European Court of Human Rights, claiming that by not enabling her to commit suicide legally, British law violated articles of the European Convention on Human Rights that prohibit degrading treatment of citizens by their government. But, all those arguments were lost in that court too on April 29. Pretty died May 11.

George Levvy, chief executive of the Motor Neuron Disease Association in Britain, was quoted in the British press as saying his members were divided in their opinions over the Pretty case. But an informal grassroots disability rights network arose in Britain to counter the threat they thought was posed by the case. Their challenge was to break the media of its habit of framing the euthanasia debate as progressive proponents of autonomy and choice versus religious and social conservatives. They met with some success.

British groups tackle the media

BBC internet coverage of Pretty's death quoted Rachel Hurst, director of Disability Awareness in Action, who said granting Pretty's husband immunity from prosecution, "would be a slippery slope and many people who did not want to die could be affected." The London Herald quoted a statement on the European Court decision issued By Very Much Alive, which it characterized as a "disability pressure group." The statement said, "We hope this is the end of a sorry chapter in legal history, but we will remain vigilant to ensure that euthanasia is never acceptable in a civilized society."

Very Much Alive founder Andy Barry, who has cerebral palsy, says, "I think we created an atmosphere in which people can't say that every person with a disability is for euthanasia." It's no coincidence that Very Much Alive sounds like the proper British version of the American disability anti-euthanasia group Not Dead Yet. Barry and others formed it early this year to "challenge the increasingly common view that sick and disabled people may be "better off dead," he says.

Barry says most of those in the small membership are people with severe disabilities who need daily physical assistance. Like Not Dead Yet, it uses listservs and the internet as it's primary communication and organizing tool.

Hate mail for Hurst

Hurst says she got hate mail in response to her perspectives in the press, but two journalists in particular understood what she was saying and wrote good things. DAA was founded in 1992 by Disabled Peoples' International, World Federation of the Deaf, Inclusion International and IMPACT as an international information network on disability and human rights. The three paid staff produce monthly newsletters and resource kits to help disability rights organizers throughout Europe.

Hurst says "society" is her disability. "DAA does not accept disability as another word for impairment or functioning, but defines it as the interaction between a person with an impairment or condition and the barriers of attitude and environment."

The British Council of Disabled People also took a very public stance in opposition to Pretty's assisted suicide wish. Council director David Coley says the coalition, which formed in 1981, has 130 member organizations. Coley says, "The message from our conferences has been clear: given the current climate of viewing disabled people's lives as lives 'not worth living' it would be immensely dangerous to allow euthanasia. It would inevitably be impossible to legislate to ensure adequate protection, and many disabled people would be offered support in killing themselves rather than addressing the real shortage of adequate independent living services.

We have definitely seen more calls and media articles on assisted suicide, and in nearly every case disabled people are held up as a justification of this as a 'caring solution' rather than addressing the rampant under-funding of accessible assistance, housing, transport and free adaptive equipment. The benefits of funding for personal assistance, and full equal social rights are not given any where near the same media coverage."

Belgium, France and Denmark

But whatever credit this grassroots effort can claim in the outcome of the Pretty case in the editorial pages, it's likely to only be round one. News stories that stir the debate over euthanasia have surfaced around Europe this year. Shortly after Pretty died, Belgium became the only country besides The Netherlands, to legalize euthanasia under certain circumstances. Three days later, Dominique Knockaert, 44, a French woman with the same disability as Pretty, called upon her government to follow Belgium's lead. Knockaert told Agence France-Presse that while she still wants to keep living, she doesn't want to travel to another country should she choose to have her husband assist her in committing suicide.

An opinion poll published in the Danish newspaper, Jyllands-Posten, in May said 82 per cent of Danes supported legalizing euthanasia for those with "incurable illnesses."

Hurst sees in these examples an ominous trend in Europe that is not new. It takes root, she feels, in the better-dead-than-disabled theme of the larger global debate of bioethics. She said, "All of us at DAA know that the current attitudes regarding our quality of life, resulting from genetic advances, are increasing the underlying hate of disabled people and discrimination."

Coley says, "Clearly this issue does need an international response from disabled people, but this is difficult given the different social understandings of our experiences as disabled people around the globe. The fact that the UK and US have been able to speak clearly and with the same voice that euthanasia is a modern peril has undoubtedly strengthened our lobbying."

Grassroots action across Europe

Hurst says, "The European disability movement is trying to do something about this issue, but it is slow as in most of the countries, disabled people are too busy fighting for accessible transport and services and have little understanding of the impact of these eugenic attitudes." But she believes some seeds from which such a movement could grow have already been planted. "We have been informing our (about 70,000) readers about bioethical concerns for at least eight years, through our newsletter and special reports." DAA materials go to 164 countries and are translated into 44 languages.

Hurst also says DPI's European Region has done some important groundwork by speaking out forcefully against many of the negative disability assumptions of bioethicists. In 2000, DPI Europe convened a working group of members from France, Italy, Portugal, Spain and the UK. The result was a position paper entitled," Disabled People Speak on the New Genetics." Its stated purpose is "to influence the European Union, Council of Europe and national governments in their way of thinking on bioethical concerns and to educate disabled people within Europe and the rest of the world"

On euthanasia, the paper states,

"Supporters of euthanasia argue that voluntary euthanasia is a matter of personal choice without recognizing the sometimes very persuasive powers of doctors and relatives who may have subjective reasons for hastening the death of an individual, and the lack of palliative care and support services available to ensure a better quality of life.....

"We are deeply alarmed that without proper social and medical support, disabled people are often made to feel a social burden and are under pressure to choose the option of legalized euthanasia. We repudiate the utilitarian ideology which informs much of the new human genetics, particularly the assumption that society would be better off without the inconvenience and expense of disabled people."

Hurst thinks this is powerful ammunition. "As a result of the work done on this, there are more disabled people knowledgeable and committed enough to do further work in their own countries. The really crucial thing is to get more disabled people to feel that they can argue against the scientists and not be intimidated."

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