Chapter 2: An integrated approach to sustainable development for persons with disability

Why an Integrated Approach?

In the introduction, we talked about social prejudices against disability. When these prejudices find their way into policies and practices of government, they get institutionalised. In other words, the prejudices appear in a new, more formidable form. They get cast in bricks and mortar. A building is erected with the letters: "Rehabilitation Centre" for the blind, or for the deaf, or for the physically or mentally disabled people.

This institutionalised prejudice, at a still higher level, could take the form of a whole government ministry, or a department within a ministry, set aside to look after the disabled people. With the poor, the aged, the unemployed and other marginalised strata of society, the disabled people become objects of "social welfare".

What we are advocating here is an integrated approach to disability. In this chapter, we deal with "Integration" at the conceptual and policy level; in another we deal with another expression of it, i.e. at the community, or grassroots, level.

What does an Integrated Approach Imply?

It implies, first of all, that disabled persons must not be treated as objects of social welfare. To be sure, there are those amongst them, just as there are those amongst the able bodied, who may need support from the state. Among these belong, the aged, the poor and the unemployed. There are amongst the disabled people those whose disability may be so severe (such as those with multiple disabilities) who would deserve state assistance. But this does not) justify placing the whole category of people called "the disabled" under welfare.

Secondly, it implies that insofar as disability is a social issue, it should be the responsibility of the government cutting across particular ministries. Disability is not the project just of the Ministry of Social Welfare; that is the road to isolation. The integrated approach makes it the responsibility of all ministries, just as it is the responsibility of all ministries to be responsible for the environment, the rights of women and those of the "abled" people.

Thirdly, integration means creating harmony, an attitude of caring, within the families and the communities irrespective of whether their individual members have disability or are able bodied. The disabled person must be able to live and love like any other member of the family or the community.

And finally, integration means creating a space and an opportunity for the people with disabilities to merge within the mainstream activities and the general system of the society.

Of course, given the legacy of past policies and prejudices, integration cannot be achieved overnight. Even with the best will in the world to change things around, institutions stay in a state of transition for a long time. But integration must be the objective of all those who are concerned with the genuine welfare of people with disabilities.

What, Then, are the Barriers to Integration?

A barrier is like a fence or a hurdle. You have to jump it or go around it in order to reach out to the other person. At the best of times, it slows down communication; at worst it stops communication altogether. When communication stops or is obstructed, the result is isolation. That isolation reinforces the very prejudices which may have been the initial cause for creating that barrier. If, furthermore, those isolated from the "mainstream" of social and economic life are disabled for various reasons, this reinforces their marginalisation and disempowerment. It is a vicious circle. The prejudice breeds isolation; isolation further feeds into reinforcing the prejudice. Cutting off from the mainstream of social and economic life marginalises those who are so cut off, and marginalisation takes them further and further away from the mainstream. This, in the days of apartheid South Africa, used to be called "separate and unequal development", and, as we know, this cannot be a lasting solution to any social problem.

What, then, are these barriers to integration that we must pull down? The following is a schematic presentation of these barriers in the form of a "continuum" [a "continuum" is an unbroken, or fluid, series of affairs that, in this particular case, feed into one another; the series are connected, not separate or isolated].

The continuum is from the personal, the subjective, to the highest institution of the state, namely the government. Lack of self-esteem is often the product of the environment, including the manner in which the disabled persons are brought up by the rest of the society. It remains the biggest barrier to PWDs' advancement. Once that is restored (and this should be the only legitimate use of the word "rehabilitate"), then half the battle is won. The rest is a matter of mainstreaming integration.

What room is there for the institutional approach in this?

Historically, the presence of human beings with disabilities has generated a slowly evolving response. It has moved from trying to eliminate them, to the "poorhouse" approach (that is, removing them from the view of the non-disabled people), to institutional care.¹ In more recent years, however, governments are closing down institutions because of budgetary difficulties. That now is going to the other extreme.

Members of the Greenfields project. (Photo by Marla Feldman)

Institutions are necessary, but they are necessary not as homes but as back-up support to community and family efforts. And the approach within the institutions must be applied not in a wholesale manner to all the people with disabilities without regard to the specificity and gravity of each person. Flexibility of approach that respects the dignity of the human being must at all time be the cardinal principle of institutional intervention.

Integration of Cross-Disabilities

There is another sense of integration that must be discussed, namely the integration of people with different disabilities in common activities. Institutional isolationist policies not only separate the PWDs from the able bodied, but also the PWDs from one another based on their particular disabilities. This is a further extension of the same policy of "social apartheid."

These, like all categories, are "broad" categories, and hide real differences that may exist within each category. For, of course, some are more severely impaired than others within the same category, and these differences in degree are as important to take into account in any programme as differences in the type of disability. Once again, there is some justification for "transitory" isolation of some forms of disabilities, or some training courses (e.g., to learn braille). But this does not justify isolation as a matter of policy.

Sustainable Development

Now we come to the second phrase in the title of this chapter, "sustainable development". "Development" has a positive echo, it evokes good feeling. Everybody wants to "develop"; you cannot argue against it. And indeed why should you? Is it not the right of every individual to want to better himself or herself materially? Is this not what human existence is all about? That is correct.

Because "development," as it has taken place over the last hundred years or so has not been, and is not, "sustainable." Development cannot go on in the manner it has all these years. What is taking place is backwards development, perverse development, a disagreeable kind of development. In fact, if the word is to mean something positive, something we can all support, then it is not "development" at all.

According to a 1992 report by the International Food and Agricultural Development (IFAD), called "Report on the State of World Rural Poverty," the poor in the world have increased in number. Today, one person in every five is "poor" in the sense that he or she does not have the means for even basic subsistence. This is unprecedented in world history. In ages before the "modern" epoch of industrialisation, people were indeed materially "backward" when compared to the technological "advances" of our present times, but, within the means available to them and barring natural catastrophe, people in general had enough to "subsist." Today even this basic subsistence is eluding over a billion of the world's five billion people. Poverty thus has become the biggest issue on the world's agenda.

Next to poverty is Environment. Here, too, "development" has brought catastrophe to our environment. Never before in history was the very survival of the planetary ecosystem at stake. Today, humankind is destroying the very basis of its own existence. If industrialisation continues apace in the way it has done over the last 100 years, then within the next 100 years (or less) we would be destroying the bulk of the world's forests, entire river systems of large parts of the globe, the ecosystems that regulate the cycle of regeneration of our natural resources, the fertility of the soil from which we derive our foods, the purity of the air we breathe, the ozone layer that acts as a protective shield against the sun's rays, and we would have exhausted most of our non-renew able energy resources such as oil and natural gas, and most of the minerals in the bowels of the earth.

It is in this context that the concept of "Sustainable Development" entered the calendar of global conferences. During 1987, some of the leading citizens of our globe had decided that our present generation is engaged in so much environmentally destructive consumption that the survival of future generations is under serious threat unless "the needs of the present (are met) without compromising the ability of the future generations to meet their own needs."²

The delivery concept of "development"

But "development" has come to mean providing impoverished communities with relief assistance, money for "income generating projects," and material inputs to enable them to engage in production and marketing of commodities for their survival. The "delivery" deal of development dominates the work of most NGDOs in Africa. Development, in this instance, is defined as an outcome of delivering to the "needy" masses certain cc things" - whether these are actual material things (such as school books and blair toilets), or ideas (in the form of "expert" advice, or technical assistance).

How do we react to this? For sure, the practical aspects of "delivering" goods to people impoverished by the depressing condition of their economies is important. This kind of help should by no means be devalued or trivialised. But an exclusive preoccupation with these "bread and butter" issues could lead to serious problems of which we should be aware.

Concentration on providing cc goods and services" gives us the illusion that we are doing something to alleviate the poverty and marginalisation of our people, whereas, in fact, we are doing all the running in order to stay exactly where we are. Indeed we may be moving back wards. Why?

· Because we are not tackling the larger forces that create poverty, unemployment and alienation among our people.

· Secondly, we would be avoiding our responsibility to think through the workings of the larger system and leave all the thinking to be done by experts.

· Thirdly, the delivery concept disempowers people. It makes people believe that their development is a product of receiving donor funding from the North, and technical advice from their own or foreign consultants.

At the opening of the Entebbe Workshop, Hon. Eliphaz Mazima, Member of Uganda's Constitution Assembly representing PWDs, quoted the former President of Tanzania, Mwalimu Nyerere's definition of the term "development." Mazima highlighted the following seven points about the definition:

· Development is a process;

· It is the realisation of potential for self support and contribution to society;

· It involves the building of sell: confidence;

· It aims at leading lives of dignity which includes gainful employment that helps individuals to meet basic needs, security, equity and participation. These lead to fulfillment;

· Freedom from fear of want and exploitation; and

· Freedom from political economic and social exploitation; and

· Development starts from within.

These seven points form the "ideological" glue that binds this Guide. They need to be revisited from time to time. Unless development starts "from within" nobody else is going to be bothered to do it for you.

A hen can sit on a stone and not produce a chicken. What hatches into a chicken is the force of life inside the egg itself. The force of change is inside oneself; outsiders can only provide "enabling conditions." No more.

[This is an adaptation from a quote by China's Mao Tse-tung]

Entebbe Workshop participants visiting the Greenfields Project, Mbale, Uganda. (Photo by Marla Feldman)