The importance of self-reliance

The burden of the argument so far has been against the welfarist/medical/charity model of rehabilitation, and in favour of empowering the disabled people to take control of their own destinies. Let us summarise the argument against this model:

1. The model reduces the disabled person into a mere receptacle of welfare or medical aid, not an actor in his or her own behalf. It encourages a patronising attitude towards PWDs, and this robs the latter of self-esteem and dignity.

2. It kills the initiative and creativity of the PWDs.

3. It creates a Donor Dependency Syndrome (DDS) among the PWDs.

4. The welfare model has created a sizable industry of "Professionals" and fund-raisers for whom it eventually becomes a "business" in whose continuation they acquire a vested interest.

5. The medical version of rehabilitation is one of the worst expressions of this model, because it isolates the clinical aspect from all other aspects of the life of the disabled people. It treats people with disabilities as "patients" and case numbers.

All this is not to say that there is no room for welfare, or even for medical care. There is. But all in their own place, and in their own concrete situation and circumstances. All generalised approaches to the disabled persons (and this applies as much to CBR as to the medical model) must be avoided, in favour of a pluralist approach based on the principle, first and foremost, of empowering the disabled persons to control their own circumstances of existence.

Whose Ability Suspend not my existence On a flimsy cobweb Of society's lacerated pity - K. Makgekgenene, Botswana

One of the cardinal components of empowerment is to be able to make a living for oneself. Not to have to depend on others for a living. Once you reduce yourself to the role of a mere "consumer" you have become a negative force to yourself and to others.

The adjoining passage takes poetic liberty to wax lyrical about the virtues of productive work. There is nothing wrong in a bit of lyric even in a "Guide" book! After all, a "guide" is not all about the body. It is also about the spirit. With the right spirit, some disabled people have moved mountains.

To be engaged in production, any kind of production (whether for a living or for art), has a more enduring therapeutic value than all the clinical treatment you can get from professionals. So, get down to production. The wheel-chair is no bondage to the mind. Your blind eyes can probe deeper into the recesses of the mind than those of the sighted, and think of something that only you can do and be proud of. Show the world that your deafness is a protective shield against the polluting sounds of the so-called "civilization," and play music with your heart so only you can hear.

Let us, however, get down to the hard reality. And the reality is that, increasingly, under the circumstances in which our countries find themselves (especially in Africa under the regime of the Structural Adjustment Programmes), there are fewer and fewer jobs available. The employment market has shrunk dramatically. African formal economics are contracting. The so-called "informal" (better called "non-formal") sector now provides "employment" to anything from 50 percent to 75 percent of Africa's increasing population. That is the reality, and it does not look as if things are likely to improve for the better in the foreseeable future. Under these circumstances, what options do the PWDs have? Broadly speaking, they have three options.

Employment options for PWDs

In a contracting wage market, the only real option open to most people (and not just the PWDs) is self-employment (the third option in the above chart). But let us first talk about the other two.

Subsidized employment

Why the subsidy? is the first question that comes to the fore. The answer is that it is part of "affirmative action" which we talked about in Chapter 3. It is a component of policy that tries to equalise conditions which otherwise would be discriminatory against certain groups of people, in this case PWDs.

There are two kinds of subsidized or sheltered employment:

1. The first kind is one where a group of PWDs (usually with the same disability) are enabled to set up a business or a manufacturing or service enterprise, and their costs are partly met out of a grant. The grant could come from either the government or from a non-government organisation (NGO) or a donor.

2. The other kind of subsidy takes the form of the state "topping up" the wages (or salaries) of PWDs who are employed by mainstream enterprises. The usual argument is to compensate the employer for the presumed reduced productivity of a person with disability in comparison to his/her colleagues.

Workshop participants discussing the technique of sewing canvas products. (Photo by Marla Feldman)

Of course, the subsidy could become counterproductive if it becomes a disincentive to work. Also, there are, of course, practical difficulties about the amount of subsidy and its duration.

Furthermore, one might ask if the subsidy is not tantamount to charity, or welfare, against which we had earlier argued. Not necessarily. There may be cases where such ventures are set up purely as extensions of welfare programmes. But even here, insofar as people are actually engaged in some productive activity that adds value to the economy, as well as value to the people's sense of self-esteem, it changes its character from being "passively welfarist" to being "productively welfarist." It is not the best option, but under certain circumstances, and provided it is not done with a patronising and dehumanising spirit, it is a legitimate way of creating employment for the PWDs.

Also, let it be understood that there is no economy in the world that does not use some or other forms of subsidy to support certain groups of people (the best known examples being the farmers in France and the United States).

Various Models of CBR
Subsidized Employment		Waged or Salaried Employment	Self-employment Without Subsidy
In isolated ventures	In the mainstream		As cooperatives or groups	As individuals

A member of the Young Deaf Handcrafted furniture makers sculpting a tabletop. (Photo by Christine Fowles)

Whatever the merits of subsized employment, its real limitation is that this method of generating employment cannot go very far. It cannot create mass employment. There are financial limits to what the government or NGOs can do.

Wage or salaried employment

This is an option which seeks neither a subsidy nor special treatment. The disabled person offers himself or herself for a job, or a profession, entirely on merit. What he/she is up against, however, is the attitude of society that discounts the merit on account of the disability without even putting to test his or her competence.

At the Entebbe Workshop, the participants made a "role play" to test out what barriers and obstacles existed in the employment of persons with disabilities. It came out that, generally, employers and placement officers felt uncomfortable even whilst interviewing people with disabilities. Often the disability became more of an issue than the applicant's qualifications. And some of the worst stereotype attitudes surfaced during the interviews.

However, it was also found that once a placement officer is educated about disability, and his/her prejudices removed, s(he) could even get enthusiastic about offering a job to somebody with disability. The challenge, therefore, is how to educate those in responsible positions to hire PWDs. Like everything else, this requires massive investment in information gathering, dissemination, awareness raising workshops, and radio and television programmes.

We come now to the third option, one that is no less challenging, but that is about the only one left in a world where paid employment is fast shrinking.

Self-employment in Income Generating Projects (IGPs)

These are economic activities of PWDs either in groups and cooperatives or as individuals. The distinction between a "group" and a "cooperative" is only in its formation and status. A cooperative is normally registered, has a constitution that regulates its function, and is usually supervised, or monitored, by some organ of the state. A "group" Is a more informal structure. Cooperatives can exist in both capitalist and socialist-oriented economies.

Before we go any further, there is one issue we must clear. We are here definitely talking about genuine self-reliant efforts, not those that are for ever and ever dependent on donor funding.

Whilst vast numbers of informal activities (usually by the poor, marginalised sections of society) tend to find their own means of raising money for their "enterprises," there is a tendency, generally, for those who describe themselves as involved in "Income Generating Projects" to go on soliciting funds from some donor or another. How, one might ask, are they then different from "subsidized enterprises"? To be sure, they are then no different. They must then fall in the first option analyzed earlier.

To a point, however, if such IGPs solicit only "initial" funds, or start-up capital, since this is one of the most serious constraints on IGPs, then an approach to a donor is justified. The more so, if the money is taken as a loan rather than as a grant. In the long run, however, they have to become fully self-reliant to earn the title of a legitimate mainstream business.

The Entebbe Workshop spent a lot of time on issues related to these kinds of activities - i.e. how PWDs might become economically self-supporting. For this reason we shall devote the next four chapters looking in some detail into some of the problem areas, and the practical ways in which these issues might be addressed. The rest of this chapter will look at some preliminary issues relating to IGPs.

Group versus individually designed and managed IGPs

Disabled people sometimes feel that they are discriminated against by the donor community. A participant at the Entebbe Workshop asked this question:

Why is it always emphasised that the development of PWDs should be undertaken in groups, yet the able-bodied develop as individuals?

Implied here is indeed a subtle form of discrimination against the disabled. They are assumed not to be capable of handling matters "on their own." They must either have somebody to hold their hands (the charity model), or they must hold each others' hands (the group model). Of course, there is nothing wrong in working in groups. On the contrary, group work has certain definite advantages. The workshop itself identified some of these:

· Groups are important particularly for certain kinds of projects which would otherwise be difficult to be undertaken by individuals, such as fence-making.

· Furthermore, group projects enable people with different disabilities to complement one another's strong points and to compensate for their drawbacks.

· Group work promotes social integration and recognition in the community. Thus, they are most suitable for CBR projects.

· Team work allows for the emergence of new ideas.

· It enables people to acquire leadership qualities, people who need to be constantly accountable to their peer group.

· Group efforts are generally more sustainable, and, if well run, have a higher level of continuity and possibilities of expansion.

· Finally, but not least, group work embodies the spirit of solidarity. A united force can lobby better for changes in the policies and practices of the government, the community, the NGOs, and other stakeholders.

All these advantages of group work are well known and appreciated. What the Entebbe participants were op posed to was the idea that PWDs can only work in groups. They were challenging the general tendency on the part of donors to insist on PWDs to form themselves into groups before they could be supported. One of the donor representatives at the workshop explained it thus:

Donors generally prefer to fund groups because limited resources would this way benefit more people. Furthermore, group projects cater a wider community, and a wide range of skills and abilities are tapped and utilised. Issues like equity, capacity building and management are taken care of In funding an individual, there is no assurance that capacity building would be achieved. There are, of course, some advantages of individual projects, such as, quick decision making and individual recognition. But the disadvantages are that these individual projects tend to have limited life span, and could be exploitative of the workers.

The workshop participants themselves identified the following as specific advantages of individual projects:

The Advantages of Individual Projects

· They are directly related to the needs of the individual.
· They are less risky.
· There is high level of commitment and motivation in individual projects.
· There are less legal implications and difficulties.

And they relayed the following negative experiences many of them had in working through group projects:

Disadvantages of Group Projects

· Divergent needs by different members; some needs are left out when people have to work in groups.

· More risks due to divergence among members.

· Some members lack commitment. Selfishness of some members who want to get more from the project compared to what they put in it. Group projects are burdened by more "observers" and fewer participators. This can result in meagre output because actual contribution is only from a few people.

· Lack of legal contract among group members can create problems.

· Newly formed groups do not understand what it means to work as a group and to take collective decisions.

· Some groups start projects which are not related to their physical and mental abilities. As a result, they are frustrated during implementation and finally the project is abandoned.

· Financial mismanagement and accountability is a constant headache.

· Lack of unity among participants.

· Poor division of labour whereby some leaders tend to personalize projects.

Conclusion

Of course, the debate is inconclusive. This is one of those issues where it is unwise to be rigid. Much depends on the concrete circumstances of each situation. Remember our analogy of the street map - only the inhabitants know the terrain, the byways and highways. From the outside we need to keep an open mind about various possibilities.

The workshop itself recommended that individual as well as group projects should both be promoted. The donor representative who earlier gave the reasons why her organization generally favoured the group approach went on to add, however, that in recent times it was now moving in the direction of supporting qualified individual micro-projects, not directly, but through intermediary (NGOs) The ILO representative at the workshop added that recently there has been a tendency in his organization also to advocate funding individuals rather than groups because of the problems experienced in group funding.

There we are. It is an open field. For certain purposes and in certain situations, there is no question that the group approach is ideal. But there is no reason why highly motivated individuals should not be encouraged to plough their own furrows. The objectives of the next four chapters is to look at general issues that concern both groups and individuals when they get into income generating projects.

However, before we end this chapter, there is an important issue that must be addressed. This is the question of gender and class in relation to strategies aimed at enabling the PWDs to be self-reliant.

IGPs at the crossroads of gender and class

One disabled woman participant at the Entebbe Workshop suggested that often a distinction is made between an Income Generating Project (IGP) and Income Generating Activities (IGA). The latter are normally for the women. They are "low level" activities, and normally confined to the traditional bread-making, sewing and crocheting type of work. When an activity becomes "serious" and involves "high technology" or "up market" commodity production, they tend to gravitate towards men.

This is an important distinction. Whatever the linguistic merits of the distinction, the point is that women do get discriminated against in terms of securing the resources for projects or activities that are on the "up market" or involving "high technology." Women, generally, are discriminated against in our societies; the disabled women (especially, the poor amongst them) even more so.

Besides gender, there is an important class dimension to disability.

Nelson Isiko: "There are three classes of disabled people - the rich, the poor, and the middle class. The first two are not present in this workshop; the first because they do not care for the disabled, and do not even regard themselves as disabled, the second because they are too much on the margins of society. We here are mostly from the middle class." (Closing speech at the Entebbe Workshop)

Isiko's observation is reflected also in a study carried out in Zimbabwe by the ILO. An ILO publication entitled, "Listen to the People," has this to say:

Two findings... may be worth reporting as symptomatic. Wherever disabled people are engaged in meaningful or gainful activities they are respected members of the community and the disability loses its stigma. Second, the affiliation of disabled people to a certain social group or class is more important in the assessment of the disability than the disability itself. The rich and well educated are believed to succeed in life irrespective of their disability. When disability is combined with poverty and lack of education, the prognosis for success is bleak. ¹

So the conclusion of this discussion is that whenever planning for IGPs, the PWDs must be self-conscious about the circumstances of class and gender, and related social prejudices, myths and biases which hamper communication not only between the disabled people and the able bodied, but also amongst the PWDs themselves.

Action guidelines A. For Persons with Disability PWDs must: · As far as possible, aim at self-reliance. Self-sufficiency is an unachievable goal, because nobody on this earth is self-sufficient, we all need support and resources from outside. However, self-reliance, the ability to look after our own affairs, is both achievable and necessary for self-esteem. · Decide which particular option is best suited for their circumstances self-employment, wage or salary employment, or within some kind of subsidized income generating activity, either in the mainstream economy or in an isolated operation with other fellow PWDs. · If the circumstances, including their specific disability, are too exacting, difficult, then some kind of institutionalised subsidy may well have to become part of life. Otherwise, it is best to get out of subsidized existence as soon as is possible. · Insist on being part of the mainstream, and not be isolated from the rest of society. · Bear in mind that when engaged in group IGP, the first skill to learn is not the technical skill, but the human skills - how to relate to people, how to reconcile differences, how to observe group ethics. These make or break groups. · Try not to be exploitative of other people when engaged in an IGP of their own as individuals. For then, how different are they from those they criticise for exploiting them? · Always be conscious of gender and class differences amongst themselves as PWDs. When engaged in IGPs they must observe fair practice in relation to those sections of the society who tend to be abused or marginalised. B. For the Government The government should: · Develop and implement policies which enable PWDs and their families to attain a decent quality of life. · Not treat PWDs as one homogeneous group of people, and "lump" them together in a uniform programme of action. There are differences amongst them, and these differences have to be respected. There are those amongst them who might need institutionalised back-up support for many years. But the vast numbers are likely to be those who could look after themselves with some initial support in the form of training, tools, capital, and extension service. · Work out with other stakeholders (for example, commercial banks for start-up capital) ways and means of providing subsidy, where this is necessary. It could, for example, take the form of subsidizing the salary of a skilled PWD employed by a private company. · Encourage cooperatives of PWDs, where practical, so that PWDs can pool their resources and skills to earn collective living. These must then be supported with outreach programmes just like any other cooperative. · Ensure and monitor the application of fair standards in relation to PWDs engaged in business. There are those among the PWDs who are quite competent to start a business or a profession as individuals. Often, however, they face discriminatory practices by trade associations, banks, marketing agencies, insurance companies, and even civil servants. These must be exposed and dealt with by law. · Apply the "participatory' principle in all income generating projects of PWDs. They must facilitate the PWDs to do their own things. C. For NGOs, INGOs and NGOs working with PWDs · Much of what is said about the role and responsibility of governments also applies to NGOs, especially the need to respect differences amongst PWDs and to be sensitive to the specific demands of each category. · Some IGOs and NGOs are moving out of their inclination to support only group initiatives among the PWDs. But many still are locked into past practices. PWDs need to be supported as groups, for sure. But PWDs are also individuals. Those amongst them who have the competence to start on their own as individuals must be supported. · As with government, IGOs and NGOs must apply the "participatory" principle when working with the PWDs. · They should consider funding programmes for parents of disabled children and caters of severely disabled persons. Some Areas for Further Discussion What is the difference between "self-sufficiency' and "self-reliance"? What does it take to be self-reliant? What group ethics are necessary for a group income generating project to succeed? Should donors support an individual PWD who exploits the labour or skills of other PWDs for his/her profit on the grounds that it at least creates employment for the latter?