"In spite of the often difficult situations, disabled people are not giving up the struggle for freedom."
Henry Enns, Executive Director, Disabled Peoples' International
What Kind of Development?
by Henry Enns
According to the United Nations High Commissioner for Refugee (UNHCR), there were some 10 million refugees in the world in 1984. They were spread out in refugee camps in every continent except North America and Australia. The situation has not improved since then.
According to the UNHCR, a refugee is defined as "any person who, owing to well-founded fear of being persecuted for reasons of race, religion or nationality, is unable... to avail himself of the protection of that country." Each and every refugee is a person--a mother, father, child--with much the same hopes, cares and fears that we all have. Will I eat today? Will I live till tomorrow? Refugees cannot be sure of anything.
Among these refugees, several thousand have been classified as disabled by asylum countries, according to the UNHCR. They are physically, mentally or sensory disabled. According to the World Program of Action Concerning Disabled Persons, 10 percent of the population has a disability, and it is as high as 20 percent in some developing countries. Thus out of 10 million refugees, one might expect to find some 2 million disabled refugees. Yet only several thousand seem to exist among them.
The question might well be asked where are the others? What became of the disabled persons before or when the refugees fled to neighbouring countries? Were they left behind? If they were, where are they now? Did they die enroute to the camp? No one really knows or admits to knowing. It seems as though they never existed in the first place. Yet we know that they did!
Since 1981, the UN High Commissioner for Refugees has had a section for disabled refugees. Its purpose is to encourage countries to take more disabled refugees. It does this through a special plan called 10 Plus. Countries are encouraged to take at least 20 disabled persons and their families each year. This allows for long range planning. A number of countries have committed themselves to this plan--Sweden, The Netherlands, Switzerland, Finland, France, Belgium, Norway, New Zealand and recently, the U.K. and Canada.
Refugees are considered for resettlement using a number of criteria designed to predict prospects for successful integration, such as education, linguistic ability and family ties in proposed countries. Family ties are seen as especially important because they are directly correlated with successful integration. Sponsorship expedites a refugee's chance of resettlement, but everyone must still pass a medical examination. A whole family accepted for resettlement can be rejected at this stage if one family member is identified as being handicapped and thus a potential "burden" on society.
On the whole, immigration policies in most countries discriminate against disabled refugees. Countries only want the cream of the crop, the best trained and educated refugees and those who are physically and mentally "perfect".
Mentally ill persons are particularly difficult to resettle because countries claim they have no facilities to deal with cross-cultural mental illness. However, once diagnosed it is almost impossible to change the assessment.
In the camps the refugees are well aware of criteria for acceptance in each country. They are handed these as they enter. Rumors travel around camps regarding who is strict and which official is lenient. Because most doctors and officials are over zealous and often prejudiced, they label people falsely.
As a result of the strict immigration policies and the inadequate assessment process, tragic situations have occurred. Stories are told about families leaving disabled children behind in order that the rest of the family may be resettled. There are even reports of disabled children having to be killed. In other cases disabled persons have taken their own lives to save the rest of the family. What horrible guilt to burden a family with.
Clearly the plight of disabled refugees is a human rights issue that needs to be addressed by the UN and member states. Policies and procedures are based on a prejudicial perception of the abilities of disability as a "burden" on society. Yet it has been demonstrated over and over again that disabled persons make significant contributions to society. Surely the treatment of disabled refugees is in flagrant violation of the United Nations Declaration of Human Rights.
Visit To Angola: Where Civilians are Disabled As a Strategy of LIC
by David Werner
Dr. David Werner, Director of Hesperian Foundation of California and author of Where There is no Doctor and The Disabled Village Children, visited Angola in September of 1989. The following is a summary of his article "Visit to Angola".
A visitor to the capital of Luanda is immediately struck by the many disabled men, women, and children hobbling along with the help of wooden poles or crutches. Most of the disabilities are due to amputation or polio, both the result--directly or indirectly--of the "Low Intensity Conflict" (LIC) to which the Angolan people have been subjected since independence. The incidence of polio is due to the breakdown of health services in a land where access to rural areas has been cut off by random but persistent terrorist attacks along roads.
This war against the Angolan people is largely due to the intervention of foreign governments. The US government, for example, has poured millions of dollars of assistance--much of it in the form of military hardware and training in the tactics of LIC--to UNITA (National Union for the Total Independence of Angola) the "Rebel", partly mercenary guerrilla troops sustained by South Africa.
The large number of disabled people is part of the strategy of LIC. Leaving people seriously disabled puts a greater economic burden on families and on the nation than does killing people. It also takes a bigger toll psychologically: disabled people remain far more visible than the dead.
I was invited to Angola to serve as a resource person at a training workshop on vocational rehabilitation of disabled persons. After a discussion of possibilities, we decided to actually try to make a variety of aids and appliances. For if disabled persons could master these skills, they would not only help to answer the mobility needs of the vast (and growing) numbers of disabled people, but would also have important work to do.
We scrounged bits of wire, old broken plastic buckets, blown-out car tires and inner tubes, bits of metal, old packing crates, and branches from ornamental trees. From these items, the groups managed to create a wide range of devices, including: a log scooter-board with wooden wheels; a folding sitting frame for a disabled child; a special seat and toys for a cerebral palsied child; a tray suspended by cord for one-handed transport; parallel bars for learning to walk; an enclosed swing made from a tire turned inside out; underarm and Canadian crutches made from tree branches; hand "shoes" soled with pieces of car tire, for crawlers; an arm rocker permitting a person with paralyzed arms to feed self; ramps for wheelchair access and for exercise; an orthopedic lift for a sandal, made from old rubber sandal; a pair of leg braces, made from a plastic bucket, designed for a little girl with a severe, progressive bowing of the knees; a large wood wheel with flat wooden spokes, lined with car tire (the design was later adapted for the wheelchair); an all wooden wheelchair, made from old packing crates.
Perhaps the most worthwhile part of the workshop was the growth of understanding and mutual respect that took place among the participants. We learned from each other, and a new sense of appreciation, camaraderie and self-confidence developed.
The disabled persons also talked about forming a network or association--which would be a first for disabled people in Angola.
Our most sobering thought, however, was the realization that for every artificial limb or wheelchair or pair of crutches the members of our workshop produce once they return to their provinces, dozens of additional people will become disabled by the continuing war. We agreed that our rehabilitation efforts for and by disabled people--although important--do little to resolve the root problem. The root problem lies in a global power structure based on greed and unlimited acquisition for the few at the expense of the many, a power structure that strategically misinforms the public, while using illegal and immoral terrorist tactics to pursue its ends.
I returned from Angola convinced that the biggest changes regarding the disabled community in Angola need to be made in South Africa and in the USA. The US government must stop supporting terrorists who strategically disable individuals, communities and nations. The people of the United States must learn what their government is doing. They must know that it is violating international law and every code of human decency. They must know that such violence is causing untold death, disability, disease, displacement, and suffering.
They must see--and help their government to see--that in the long run there will be no winners.
NOTE: Since David Werner wrote this article, Namibia has become an independent state. Angola thus no longer borders on South Africa, and is therefore no longer a "security threat" to South Africa. We can only hope that this will result in the situation in Angola becoming more stable and less violent.
This article first appeared in Vox Nostra No. 1 (1990).
Journey To The Middle East
by Henry Enns
In March, Marion Stroud, a member of the International Committee on the Mennonite Central Committee (MCC), and myself visited five countries in the Middle East to explore ways that MCC could support the grassroots development of disabled people. MCC is already involved in funding a community-based rehabilitation program in Husan Refugee Camp and in providing support to organizations of disabled people in Lebanon. We arrived in Jordan Thursday evening, March 3rd. In less than a month we had the opportunity to visit the Roman ruins in Palmyra, the pyramids in Egypt, the Dead Sea in Israel and Jericho, supposedly the oldest city in the world.
Spending some time in the area one can easily realize why tensions are so high. Distances are small, cultural perspectives diverse, historical and political systems vary greatly. In every country one is faced with the situation of the Palestinian people. Many of them live in refugee camps and all of them are treated as second class citizens in the countries they live in.
The Middle East is an interesting and beautiful region. From the snow-capped mountains of Lebanon to the desert sands of the Sahara, it has a diversity that enthralls people. The people are friendly and curious as in any other corner of the world. Yet one senses a difference due to the tight security measures in evidence everywhere.
It is a region where disabled people have only started to organize themselves recently. In the five countries that we visited, we met organizations of disabled people at various levels of development. In Jordan, the Futures Club organized itself only last year. In Lebanon, the country where ironically disabled people are the best organized, we had the opportunity to attend a symposium organized by Friends of the Disabled, OXFAM and MCC. As a result of this symposium, a national assembly has now been formed in Lebanon. In Egypt, a group of approximately 20 disabled people have started to meet together in an effort to organize themselves and form a national assembly.
The sense of powerlessness among disabled people was perhaps the most evident in Damascus. Even the war veterans felt it was impossible to change their situation in any way. Nevertheless, even in Damascus there is an emerging disabled movement. A small group has formed their own theater company and were performing plays in the local cultural centre. Their presentation, written by disabled persons, was one of the most powerful and moving presentations that I have ever had the opportunity to attend.
Palestinian disabled people probably face the most oppression of any group in the area. The United Nations Relief and Work Agency (UNRWA), is supposed to provide social services and health care for people in the refugee camps. On the whole, they have neglected their responsibility to disabled people. Only small projects exist that assist disabled people and they are usually funded by outside agencies. Palestinians are not allowed to join organizations in most countries, and it is thus difficult for disabled people to organize. The Intifada or uprising has caused a considerable escalation in the number of disabled people in the region. While there are no statistics on those permanently disabled, it is estimated that some 30,000 people have been injured. This figure does not include those who have been killed.
In spite of the often difficult situations, disabled people are not giving up the struggle for freedom. In Lebanon, the Friends of the Disabled, under the capable leadership of M. Kabura, have developed a unique independent living approach. Their peace efforts have gained them international recognition. Dr. Masad from Cairo is providing leadership to the development of the disability movement in Egypt. In Jordan, disabled people are working with the government to develop a new piece of legislation focused on the equalization of opportunity. During our visit in Damascus, a group of disabled people decided that they would attend a training seminar in May of 1991 to assist them in forming a grassroots organization.
Though the movement of disabled people in the Middle East is only beginning, there is a sense that it may develop very rapidly. It may well be that a new Disabled Peoples' International (DPI) region will emerge as disabled people continue to organize themselves in the Middle East.
This article originally appeared in Vox Nostra No. 2 (May 1988), p.14.
What Do We Mean By Development?
by A.K. Dube
A useful definition of development cannot be relevant to us unless it derives from the situation in which we as disabled people find ourselves.
We tend to define under-development fairly easily because we continue to experience it and have become accustomed to it. In our context as disabled people, we assume that development occurs only if we wage a successful war against deprivation, poverty, discrimination, superstition, fear and condescension--all of which characterize our daily lives.
We look at development as a process of liberation--a process that combats domination and segregation. But, we must also be careful to reflect on what we mean when we say we are "dominated" or "oppressed."
The nature of domination is that it is systematic. It is not merely a question of one individual dominating another, but of one segment of society dominating other segments. Domination is dualistic. Each one of us is sometimes a dominator and sometimes we are dominated. We sometimes oppress and sometimes we suffer oppression. When we look at the broad spectrum of society, it is clear that there are those who oppress far more often than they are oppressed. It is essential to understand these features of the development/under-development process, as people can only liberate or develop themselves if they are able to identify the forces that constrain or oppress them.
Over the last few years, a new more uncompromising mood has been growing among disabled people. Increasingly, we are moving away from passively accepting the unfavorable situations that have been imposed upon us by a prejudiced society. We are seeing ourselves as disabled, not by the idiosyncrasies of our bodies, but by a world that is unprepared to respect our needs.
The plight of disabled persons has been aggravated by the role that society has prescribed for us. These roles are characterized by feelings of being powerless; things are just as difficult and impossible as they appear to be and that one simply has to accept them.
This "role conditioning" is central to many, if not all forms of oppression. The common factor is that people are conditioned to play roles that serve the needs of the oppressor.
We are beginning to rid ourselves of these feelings of being powerless and dependent and becoming aware that we can exert a great deal more control over our lives than we have been led to believe.
As we continue to come together in organizations of a human rights nature, we must examine ourselves and look closely at the roles of the oppressor and the oppressed. Our experience, coming as it does from years of domination and oppression, has made us learn certain roles very well. We now have internalized images of what is undesirable and what is desirable.
We should recognize that disabled people who have become models of success are not necessarily the best models because their success has been achieved in a world of domination where the definitions of "success" and "failure" are prescribed by the non-disabled, not by us.
We must ensure that we are learning the skills necessary to liberate humanity from oppression. As we organize ourselves, we must be careful that we are not learning the roles of how to manipulate fellow disabled people, or how to divide disabled people. We have the right to make our own mistakes, which is a characteristic of human beings, and we should not be separated from that.
Our organizations must above all else, be avenues for the personal growth and development of all members. The importance of enabling and empowering members to make decisions about themselves and for themselves cannot be overemphasized. Advice, information and specific programs must be established to reach out to impoverished members.
Our organizations should be open to giving and receiving ideas. They should be democratic in nature and responsive to the needs of the membership.
For further reading:
"Report of Leadership Development Seminar, Francistown, Botswana, August 14-16, 1986," available from the Southern Africa Federation of the Disabled (SAFOD).
"Report on DPI Seminar, Turku, Finland, August 21-24, 1983", available from Disabled Peoples' International (DPI) Secretariat, Winnipeg, Canada.
A.K. Dube, is based in Zimbabwe, is the Southern Africa Federation of the Disabled (SAFOD) Regional Development Officer.
This article first appeared in Disability Frontline, 1, 1990.
Why Asia Rejects Western Disability Advice
by M. Miles
Many western disability experts and international organizations now advise Asian governments to base their disability policies on prevention and community-based rehabilitation. This, they believe, will avoid the painful historical mistakes of western rehabilitation services. Most Asian governments are in fact doing exactly the opposite: building prestige "handicap palaces", large residential institutions and imitations of western high-tech specialist facilities. The reasons are not hard to find.
"Asia", which includes two thirds of the world population, can be treated as a unit only by over-simplification. However, I have reason to believe that most of the following applies throughout Asia (and large parts of Africa and South America).
Most disabled persons throughout the world now live in communities where life is a daily and often losing struggle to meet physical needs. When the average, able-bodied person can barely satisfy his/her own needs for food and shelter, loving care, purpose and personal recognition, it is unrealistic to expect that much attention should be paid to the needs of disabled persons.
Rural development programs try to foster community decision-making and implementation. All families benefit when by their own labor or participation they get clean water on tap, roads, electricity, improved crops. But the average person with the minimal standard of living cannot be expected to be too enthusiastic about participating in the rehabilitation of disabled people, a weak, low-status and practically voiceless minority. Its uplift would bring little visible general benefit, and no immediate gain to any family without a disabled member.
For millions of families in absolute poverty, the birth of a disabled child (or an illness or accident producing serious impairment) places them in a slightly worse position than their neighbours. It may affect adversely the marriage opportunities of the rest of the family. There will be additional expenses. There is no hope that this new child will bring any upswing in the family's fortunes. Therefore, even the best-planned and -executed rehabilitation program will do little more than restore them to a position between hunger and starvation, with chronic illness, depression and debt their normal condition. Participation in a rehabilitation program will have only one certain effect: the rest of the village or neighborhood will know for sure that this family has a disabled member, a fact which they may have been at great pains to conceal.
Religions of the world exhort their followers to act for the benefit of the weak and needy, sick and disabled. Exhortations to do good are rarely heeded unless the circumstances are conducive. But building credit towards an after-life is an inducement. Dropping coins into the blind beggar's bowl may lead to avoidance of punishment in the after life. Disabled beggars in Asia do not hesitate to remind the public of this possibility, nor do they thank the donor since they are aware that the intention is merely to acquire credit.
The disabled beggar asks for "justice". Since fate, karma or deity has deprived him, begging becomes his rightful duty and occupation: justice demands that his bowl be filled. If the unseen forces present a poor family with a deformed baby, it is the family's duty to exploit the deformity for financial gain. To straighten and untwist the limbs of the disabled child would be to fly in the face of providence.
Prestige and Visibility
The prestige disability project is a highly visible demonstration of compassion and charity. A huge building filled with gleaming gadgets is evidence of "something being done about disability". It can be shown to foreign visitors as evidence of good intent, and as a manifestation of the "modernness" of a developing country. It draws public attention to a neglected field. Rehabilitation professionals approve because their status is related directly to the amount of money splashed about. It is also more newsworthy to report that a 10 million dollar "handicap palace" has been inaugurated by the President than that 10 thousand disabled children have begun attending normal schools at no cost other than change of attitude on the part of the teachers.
Empire and Ego Building
Disabled persons are rarely consulted about plans for their own welfare, for to do so would imply their near-equality with the planners. Instead, it is common to find rehabilitation professionals and social workers feverishly setting up little empires, cornering a part of the rehabilitation market and defending it against all comers, regardless of the welfare of their clients.
Not everyone aspires to rule, but many desire the status of the ruler's court. Rehabilitation professionals may have a choice between working in a large city-based "handicap palace", visibly earning merit by benevolence, or slogging away at polyimmunization and home-based rehabilitation schemes in obscurity. There is little doubt which alternative the average professional will find more gratifying to his/her ego.
The rich and powerful in every country ensure that high-quality facilities are built for their own use, before anything is done about inexpensive and widespread facilities for the masses. The once-favoured practice of going abroad for treatment is becoming increasingly expensive. If governments propose to put resources into rehabilitation facilities at home, the rich and powerful require a good imitation of what they would find in western capitals. Unfortunately, the new facilities will be available only to a privileged few. The same resources could perhaps have created a national network of modest local rehabilitation centres.
Prevention Wins No Votes
The politician who provides an institution for 30 disabled children boosts his public image more than the one who immunizes 30,000 against polio. The benefit of the first activity is immediate and recordable on film; that of the second can be proved only years later and depends on accurate recording of statistics and a groundwork of epidemiology which are absent in most of Asia. An institution is relatively uncomplicated to provide and run. An immunization campaign may cost less and potentially bring far greater benefit, but it involves many people and complicated factors.
The very concept of prevention by immunization assumes a worldview of a logical, causal Universe. It assumes a degree of control over one's destiny and health, an ability to predict the future and to present statistical evidence of likely outcomes. However, this is not the worldview of the majority of Asians who live in rural areas at the mercy of natural elements and who have little education.
Shortage of appropriate rehabilitation skills is the greatest single problem in developing facilities for disabled persons, and it will take many years to overcome. Two remedies have typically been tried and found wanting: (a) nationals are sent abroad for training (often they do not return or are unable to relate new skills to the local situation); and (b) expatriates are recruited to give training courses within the country (problems include inappropriate course material, inappropriate trainees, and assumption of either administrative or ex-patriate posts by trainees).
A sharp division is maintained between locally-trained professionals with theoretical knowledge and academic qualifications who devise programs and the hands-on workers. The latter are few and poorly paid, and likely to remain so.
A third group, rehabilitation professionals who have trained and worked abroad for some time and decide to return to their country, may ultimately be the ones who make the system run. They suffer from the disadvantage of being geared to sophisticated systems, and many will naturally prefer to work in western-style "handicap palaces."
Lack of Credible Schemes
Many advisors urge the adoption of low-cost rural community-based schemes at a very modest level of professional skill. The difficulties into which low-cost, community-based schemes will certainly run are illustrated by the problems of providing primary health care. These include: (a) opposition from professionals and inertia of the status quo; (b) opposition from local communities, who know that if they accept the low-cost scheme they will never get a hospital; (c) difficulty of finding and retaining suitable front-line personnel, maintaining enthusiasm, providing adequate support and supervision, encouragement and some sort of career structure; (d) transport and communication problems; and (e) preference for curative medicine to the near-exclusion of preventive and education measures.
There will be other problems in the disability field. A greater stigma is attached to disability as compared with illness. The modest level of skills being disseminated means that positive results will be slow and the drop-out rate higher than in curative medicine. Even the West has little experience involving the community and the family of the disabled person in rehabilitation (the lack of information and expertise puts community rehabilitation further behind primary health care). Misinformation from qualified doctors is quite common in the disability field, and will be believed in preference to any other opinion.
A Tentative Alternative
It appears that what is needed is a via media between the big-city institution and the rural primary-level scheme. In order to achieve some visible results over a wide area in the shortest time using local resources, we have adopted certain priorities in the Community Rehabilitation Development Project recently started on the North-West Frontier of Pakistan; (1) towns before villages; (2) children before adults; (3) locally perceived needs before theoretical strategy; (4) small-scale before large-scale; (5) visible centers before invisible periphery; (6) well-motivated parents before indifferent ones; and (7) day-centres before residential work.
The plan is to discover well-motivated parents of disabled children living in towns (starting with population of 50,000 and above), to learn how they perceive their problems and what they would like to do about them, and to steer the action towards small, local day-centres, run by committees of parents and local professionals. All over the world the evidence is that, once mobilized, parents or close relatives of disabled children have the greatest motivation and stamina for the battle to establish and monitor appropriate services. This is a resource at present virtually untapped in Asia.
With the above-listed principles, the development movement in Pakistan's North West Frontier produced ten locally autonomous rehabilitation centres for children with disabilities, run by associations of parents and other interested people. Some of these small-town centres reached out to the surrounding rural populations. Several have acted as resource centres, disseminating the Urdu-language information and advice publications of the Mental Health Centre (MHC). The MHC gave training in community-directed rehabilitation techniques to over 90 people, including some working with disabled Afghan refugees.
While thus acting as a regional resource base, MHC staff discovered the importance of reconceptualizing rehabilitation development efforts as described in: "Resource Centre Developing Information Based Rehabilitation." In Thorburn M., Marfo K. et. al (1990), Practical Approaches to Childhood Disability in Developing Countries: Insights from Experience and Research. St. John's, Canada: Project SEREDEC, Memorial University of Newfoundland, pp. 261-275.