Management of Long-Term Disability

When I was first asked to address the topic of “Management of Long-Term Disability,” I had misgivings. As a person with a disability myself, “I am less interested in management” than in the never-ending struggle for acceptance, dignity and opportunity. Most disabled people seek liberation from prejudice, pity, over-protection, domination, cruelty and exclusion by society.

As an advocate of CBR, I have misgivings too. The emphasis on “management” fits like a well-worn glove onto the institutional bio-medical model of rehabilitation—a model in serious need of evolution.

Admittedly, many disabilities do have a medical component. For some, management by a professional team may be important or even life-saving. But, historically, the bio-medical focus has overshadowed the social. Until recently, the social dimension of disability—with all its cultural, economic and political components—has received too little attention. Fortunately, this is changing.

In introducing the theme of this Symposium, therefore, I have chosen to look at the concept of “Management of Long-Term Disability” in the broadest, far-reaching sense. I would like to ask two inter-related questions, which I hope may become a sort of compass or tiller to guide the journey of the Symposium.

1. “What measures can we take to help society as a whole assume a kinder, more inclusive, more supportive position in relation to persons who are disabled or otherwise disadvantaged?"; and

2. “What can we do to promote a social order that does more to prevent than to cause disabilities, and that strives to equalise opportunities for all disadvantaged persons, rather than to put at yet greater disadvantage?”

My basic thesis—admittedly somewhat utopian—is as follows:

• For better management and prevention of disability, we need to work toward a social order, both locally and globally, that is more equitable, or egalitarian. An egalitarian society—that is, one that upholds basic human rights and insures equal opportunities for everyone—would generate fewer preventable disabilities. It would also do more to allow persons who have impairments to successfully integrate into the community and lead fulfilling lives. Without discrimination, it will try to safeguard the entire population, including persons with disabilities, from becoming marginalised in any way : physically, mentally, socially, or economically.

• An egalitarian society is guided by a sense of fair play. The population as a whole—collectively and through participatory government—will offer (but not impose) additional assistance as needed to persons or families who have special needs, so that they can participate fully in a wide range of social functions. Appropriate and respectful basic assistance will be easily accessible, regardless of the person’s or family’s ability to pay. Indeed, assistance will be greater for those in greatest need, and will be provided in ways that help reduce dependency and foster self-determination.

• Such a society is founded on generosity of spirit. It embraces a development model based on need, not greed. It raises its children to find joy in sharing, in assisting one another as equals. It seeks a vital balance with all members of its own community, with other communities, and with the natural environment. It does not condone or reward self-seeking behaviour at the expense of other people or the environment.

• Such a society does its best to be life-affirming and sustainable. Every person, strong or frail—and all living things, great and small—are considered to have intrinsic, even sacred or universal value. Those who are most fragile or vulnerable receive whatever extra care or encouragement they may need in order to achieve a rewarding quality of life.

• This sort of a kinder, more civilised social order is one that most of us long for, and some of us even work toward. Such an idealistic, more fully human society, with some variations, has been the goal of every great religion and of every great leading political philosophy. Yet for the most part, it remains a distant dream, one which humanity more closely approaches in some epochs of history than in others.

Time and again, great religious and political leaders give their lives to lay the foundations for a social order based on love. But repeatedly, their magnanimous visions are soon distorted by their power-and-glory seeking followers. The lofty paradigms devolve into hierarchical, authoritarian creeds based on selfishness and intolerance.

Our current unfair, unsustainable global development model has, in turn, led to new patterns of disability. In addition to disabilities resulting from violence, a plethora of physical, mental, spiritual and functional disabilities stem from the loss of hope … from the lack of meaningful direction in the lives of people whose sense of personal worth depends more on commercial commodities than on the joy they can find through sharing and helping others to lead fuller lives.

Factors Affecting Disability

Prevalence and patterns of disability are affected by health, environmental, social, and economic trends. Poverty and socio-economic inequality significantly increase disability.

In recent decades, the physical, economic and ecological well-being of people at the local or “micro” level has been increasingly influenced by far-reaching decisions at the global or “macro” level. Concurrently, the gap between the rich and the poor, both within countries and between them, has been widening at an alarming rate.

Meanwhile, environmental resources are being drastically plundered—by the poor for survival and by the rich for unlimited profits—at rates that increasingly threaten the ecological balance and even the sustainability of life on our planet.

This pervasive imbalance has a drastic impact on patterns, prevalence and hence, on the long-term management of disability.

Weapons Designed to Disable

Landmines are a frequent cause of disability. In the last 20 years, the production, sales and deployment of landmines has escalated. Although the military-industrial complex calls the smaller ones “anti-personnel mines,” the vast majority of mine victims are civilians—mostly women and children.

In Cambodia, Afghanistan, and scores of beleagured nations, thousands of children continue to lose their limbs to landmines. Millions of mines from wars long since ended lie in fields and forests for decades, waiting for hapless victims. The money presently being spent to defuse these mines is a small fraction of current expenditure on production and sale of new landmines.

Unfair Social and Economic Policies

Landmines are the tip of the iceberg when it comes to the way profit-hungry market forces contribute to the emerging patterns of disability resulting from structural violence.

Public assistance to families in need—which had been government policy until a few years ago—have been drastically reduced … just as it has been in most countries, rich and poor, during the last decade.

Today’s globalised economy is largely controlled by a handful of giant trans-national corporations and the governments whose politicians they buy. This elite minority has imposed on humanity a short-sighted paradigm of development designed, above all else, to make the rich richer. To this end, structural adjustment policies have forced poor countries to replace food crops with export crops. They have slashed the budgets for health and education, and privatised public services, making them unaffordable to the poor. They have frozen wages and increased prices, making it harder for the poor to feed their children and meet basic needs. And in response to the resulting social unrest, they have marketed the rubber bullets, tear-gas, and other weapons of repression needed to keep popular protest under control.

This roll-back in social progress drastically affects the incidence and severity of both primary disability related to violence, and secondary disability due to growing hardships and decline in services. Therefore, in planning to meet disability-related needs in future decades, it is essential to consider the reversals in social progress, locally and globally, and to explore ways to help society restore a participatory democratic process in which the rights, needs and dignity of all people are paramount.

The World Bank’s Newly-Assumed Lead in Third World Health Policy Planning: Implications for Disabled Persons

Until a few years ago, the World Health Organisation (WHO) under the aegis of the United Nations, was the leading institution to co-ordinate international health policies and help poor countries design effective health programmes. However, in the 1990s, the World Bank has largely taken over this role, relegating WHO to a weaker second place. The Bank has much more money at its disposal. It also has the power to impose its policies on poor countries by making these policies conditionalities for loans.

While the World Bank calls for the alleviation of poverty, it continues to endorse the same structural adjustment policies that have led to falling wages, increased unemployment, privatisation of public services, user fees for primary health care in the poorest communities, and slashing of subsidies for the destitute.

Disability Adjusted Life Years (DALYs): a New Barrier for Disabled Persons

The World Bank’s Investing in Health report introduces one concept that is especially ominous for disabled persons: namely “Disability Adjusted Life Years” or DALYs. According to this scheme, higher value is placed on those persons who are economically most productive. Those who are unproductive or under-productive (young children, the elderly, and many disabled persons) are considered to have less value, and are less worthy of public assistance.

It is important that all of us concerned for the well-being of disabled people join with disabled activists in protesting this fascist and potentially eugenic policy of the World Bank.

Planning for the Future

It is important that planners and practitioners in the disability field work closely with rganisations of disabled people to oppose emerging policies that reduce public responsibility for helping persons with special needs.

Given the rapidly growing numbers of disabled persons, even a ten-fold increase in conventional rehabilitation services would not begin to meet the growing need. More realistic alternatives are needed.

The Need for Community-Based Rehabilitation, with Strong Leadership by Disabled Persons

In planning a long-term course of action to try to meet the rehabilitation needs of most persons, it is essential that as many needs as possible be met through community-based initiatives in which those who are most concerned—namely disabled persons and their families—play a leading role.

For such planning, a great deal can be learned from two movements that have emerged in recent years—the Independent Living Movement (IL) and Community- ased Rehabilitation (CBR) Movement. Each has its strengths and weaknesses. An increasing number of planners feel that the best prospects for a long-term plan is to foster a bottom-up, deinstitutionalised approach that combines strong points from both the IL and CBR Movements.

The IL Movement was begun in North America by disabled activists who wanted a stronger say in the decisions, programmes, and services designed to meet their needs. Through the Disabled Peoples' International (DPI), the thrust of the IL movement has spread throughout the Third World. Well organised and vocal, the DPI groups press for legislation to ensure equal opportunities and full accessibility.

The Movement’s strength comes from its leadership by disabled persons themselves. Its weakness is that it tends to have middle-class priorities. Poor people in rural areas—who often have the greatest unmet needs—tend to be left out.

CBR was conceived as an international initiative by a team of forward-looking rehabilitation professionals working with WHO. It was launched in the early 1980s, as Western-style rehabilitation centres served only a fraction of those in need. So, the first goal of CBR is to move the front line of rehabilitation out of the urban rehabilitation palaces and into homes and communities.

A second goal of CBR is to take a more comprehensive, holistic approach to the needs of disabled persons, in contrast to the narrow, biomedical focus of the big urban centres, with the aim of full integration of disabled people into all aspects of community life.

A third goal of CBR is to simplify rehabilitation skills and to develop simple low-cost aids and equipment using local materials and community crafts-persons. The role of rehabilitation professionals is still important, but changes from being the primary service-providers to teachers, advisers and coordinators of back-up services.

Thus, the biggest strength of the CBR movement is that it tries to serve and include all disabled people, especially those who are poorest and most isolated.

A weakness of CBR is that, having been designed by professionals, it tends to lack strong leadership by disabled people. Disabled persons, rather than becoming leaders, organisers and decision-makers, are often still treated as objects to be managed.

Project PROJIMO—a Rural Rehabilitation Programme that Combines Features of CBR and IL Movements

I consider myself fortunate to have been closely involved, for the last 17 years, with a small community rehabilitation programme that combines features of CBR and IL. Based in the mountains of Western Mexico, the programme is called PROJIMO (Programme of Rehabilitation Organised by Disabled Youth of Western Mexico).

Most of the disabled villagers who run PROJIMO first came for their own rehabilitation, learned some rehabilitation skills by helping one another, and decided to stay and work with the programme.

PROJIMO has a motto: “Look first at my strengths, not my weaknesses. " In fact, many of the disabled workers at PROJIMO have developed outstanding skills, which range from peer counselling and physiotherapy, to the creation of low-cost, high quality assistive devices.

PROJIMO started in an unusual way. It grew out of a community-run primary health care programme. Some of the village health workers happened to be disabled. Over time, these disabled health workers often proved to be among the most outstanding. To them, their community health work was not just a job; it was an opportunity for them to gain appreciation and respect. Because they came from marginalised positions in the community, their hearts went out to other disadvantaged persons. Thus, by becoming health workers, their weakness became their strength.

People Helping Each Other

In PROJIMO, parents of children and disabled youth who have come for rehabilitation are asked to help out in whatever way they can. It is hard to say how many workers there are at PROJIMO as there is no sharp dividing line between rehabilitator and rehabilitated. Most of the staff are persons who first came for their own rehabilitation, began helping others, learned skills and gradually became workers in the programme.

Organic growth of the programme, from the bottom up

The spread of PROJIMO’S methods and ideas to other communities has been informal and mostly spontaneous. Some “graduates” of PROJIMO, including disabled youth and parents of children, on returning to their home towns or villages, have performed rehabilitation activities based on their PROJIMO experiences, but adapted to the needs and possibilities in their own communities. However, each new “offspring of PROJIMO” has its own unique character and structure.

PROJIMO has also helped to coordinate a series of short courses or “educational exchanges” These are attended by disabled leaders and workers from programmes in Mexico and elsewhere, who share from one another’s experiences.

Disabled Persons as Decision-Makers, Leaders and Service-Providers in Programmes for Disabled People

Planners of rehabilitation and support services need to look at the advantages of providing opportunities for disabled persons to play a leading role in programmes and activities concerning disability-related needs. To assist this process, all planning committees concerning disability should have strong representation by disabled persons.

Persons who have a disability themselves have a unique qualification for working with other disabled people. There are a number of advantages to including disabled persons in leadership, counselling, technical and service-delivery roles.

1. Empathy and insight: Disabled persons tend to have more understanding regarding other disabled persons, their aspirations, hang-ups, needs and potentials.

3. Role models: Disabled people are excellent role models, especially for children and parents.

4. Peer counselling: Often it is easier for a disabled person to give advice to someone who has a similar disability—and it is easier for the newly disabled person to listen to and accept that advice. Peer counselling is especially valuable where disabled persons are unwilling to and fearful of accepting their condition.

5. Creative design: Many of the state-of-the-art breakthroughs in disability technology, ranging from communication devices (including Braille) to wheelchairs, artificial limbs and transport alternatives have been invented by disabled persons.

6. Partnership approach to problem-solving: In analysing and resolving needs, often the best results are achieved when rehabilitation workers work with disabled clients as partners and equals. The mutual respect and equality needed for successful partnership is more likely to occur when rehabilitation workers and technicians are themselves disabled.

7. Income generation: In a world where unemployment is a growing problem, it makes sense to fully utilise areas where having a disability can be an advantage, namely, doing work that benefits other disabled or disadvantaged people. Therefore, training disabled persons in a wide range of disability-related skills should be given high priority.

8. Promoting equal opportunities and full participation: To help people recognise the abilities and possibilities of disabled persons, awareness-raising techniques include portraying positive images of disabled persons on posters, radio spots, and television. But nothing convinces more than to see disabled persons actually performing qualified technical skills and providing outstanding human services. Hence, when drafting long-term plans to fill most disability-related jobs, it is important that we consider competent, qualified, and caring disabled workers for these posts.

Disabled people can and should be involved in every aspect of disability-related services. Many disabled persons have the mental and/or manual dexterity needed to perform a wide range of skills. But often they lack the necessary training and opportunities. Therefore, high priority should be given to providing preferential scholarships and opportunities to disabled persons in every field and profession related to disability.

Poverty and Disability

In planning the management of disabled children, it is important first to consider their basic needs for food, shelter and essential health care. Too often, rehabilitation planners give too little attention to the economic limitations of the family. As a result, sometimes hundreds of dollars are spent on an orthopaedic appliance, a hearing aid, or special schooling—only to see the child die from an untreated infection, or hunger.

Quite rightly, many community rehabilitation initiatives are putting more time and energy into helping disabled persons and their families find ways to produce food or add to their income.

Normalisation or Liberatisation?

In the past, a standard goal of rehabilitation was to try to “normalise” disabled persons, so that they could fit into the larger society. But today, we disabled persons want something better. We do not want to be normalised into a society that is unfair to anyone. Our goal is not to fit into our ailing social order, but rather to help heal and transform it. We want to join with other groups who are marginalised and oppressed, or who are concerned about a better future, to work toward a Society for All.

To quote Zimbabwe’s disabled activist, Joshua Malinga:

“IT IS SOCIETY THAT NEEDS TO BE REHABILITATED.”

Conclusion

In conclusion, I would like to suggest that, together, we look for local solutions that contribute each in a small and different way—to global rehabilitation. Keep in mind that, at the close of the 20th Century, humanity is fast becoming an endangered species on a disabled planet. We desperately need a comprehensive rehabilitation plan to help prevent us from going the way of the dinosaurs. The path is as yet unchartered. But it can no longer be one of unlimited, lopsided economic growth, which has become a kind of global cancer. Rather, our path must be one of greater balance, economically and ecologically. In our children—who will inherit our trespasses—we must nurture a deep respect for the intrinsic value and inter-relatedness of all living things: strong and weak, large and small, non-disabled and disabled. We must breed a reverence for nature’s diversity and celebrate human difference.

 

Published in Integrator, Volume No. 8, Issue No. 1.

David Werner’s keynote address to the Symposium on the ‘Management of Long-Term Disability’ on 19 and 20 March 1998 at YWCA, Fort Canning, held by The National Council of Social Service (NCSS).