Disabled Children and Education in Africa

A Human Rights Approach

Dimitri Renmans (K.U.Leuven)

Disabled Children and Education in Africa

A Human Rights Approach
Paper for the Coimbra Summer School Geneva 2011 on Health and Human Rights

Dimitri Renmans K.U.Leuven

Introduction This paper looks into the right of African disabled children to education. The social model definition of disability underlies the argumentation of this paper. This model defines disability as the consequence of institutional and social discrimination, as well as exclusion of persons with impairments (Nagata, 2007). Notwithstanding that it is certainly open for criticisms, it remains a very valuable point of view towards disability (see Oliver, 1996). We start off by drawing a statistical picture of the situation of disability and disabled children in Africa. Next we give arguments to counter the statement that looking after disabled children is a luxury which developing countries cannot afford. We do this on the basis of economic common sense and human rights. Thirdly, we explore a method to respond to the needs of disabled children: the Community-Based Rehabilitation programme. We end this paper with some limits and obstacles to this method which will have to be overcome. What do the numbers say about Africa? It is not easy to give a clear picture of the state of play of disabled children in Africa. There are many problems concerning the measurement of the problem, defining disability is just one of them (see i.a. Schneider, 2009). In 2001The United Nations recognized this need for greater coherence in measuring disability at the United Nations International Seminar on Measurement of Disability in New York on June 4-6, 2001 and tasked a city group (the Washington Group on Disability Statistics) to improve the practice of measuring disability internationally (UNSTAT, 2011). However, we are still obliged to work with estimates which have the disadvantage of being just that. Notwithstanding this caveat, the statistics we receive from the World Health Organization (WHO) all point in the same deplorable direction: disability is more frequent in low-income countries (WHO, 2011a). According to the World Health Survey of 2002-2004 18% of the population of lower income countries have a disability above threshold 40, while this rate is much lower within higher income countries (11,8%). The same goes for disability above threshold 50, with respectively 2,3% and 2,0%. Even within the low-income countries the poorest quintile carries the biggest burden (table 1), which strengthens the assertion of a possible link between poverty and disability. What makes this even more troubling is that the highest rate of disability is within the oldest age group but the average life expectancy is much lower in the lower income groups. So the numbers underestimate the seriousness of the problem.
Table 1: Disability prevalence rates, by country income level and wealth, 2004, data from Word Health Survey Population Subgroup Threshold of 40 Higher Income Lower Income Countries (s.e.) Countries (s.e.) Threshold of 50 Higher Income Lower Income Countries (s.e.) Countries (s.e.)

Wealth quintile Q1 (poorest) Q2 Q3 Q4 Q5 (Richest) Total Source: WHO, 2011a

17,7 (0,58) 13,2 (0,46) 11,6 (0,44) 8,8 (0,36) 6,5 (0,35) 11,8 (0,24)

22,4 (0,36) 19,7 (0,31) 18,3 (0,30) 16,2 (0,27) 13,3 (0,25) 18,0 (0,19)

2,4 (0,22) 1,8 (0,19) 1,1 (0,14) 0,8 (0,08) 0,5 (0,07) 2,0 (0,13)

3,6 (0,13) 2,5 (0,11) 2,1 (0,11) 2,3 (0,11) 1,6 (0,09) 2,3 (0,09)

When we take a look at the rates of children with a disability from the Global Burden Disease study of 2004 (table 2), the deplorable situation of Africa becomes even clearer: the rate of children (0-14 years) with a severe disability in Africa is three times higher than in high-income countries. Even compared with other low and middle-income countries, the African region still performs worse. The same can be seen when regarding severe and modest disability. Notice that the overall rate of disability in Africa is equal to that of higher-income countries. However in each age group Africa scores worse

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which gives support to our thesis that the low life expectancy in Africa gives an underestimated state of play.
Table 2: Estimated prevalence of moderate and severe disability, by age and income level of country, 2004, data from Global Burden Disease Report Age group World High Income Countries Low and Middle Income Countries, WHO Region African Americas SouthEast Asia European Eastern Mediterannean Western Pacific

Severe disability 0-14 y 15-59 y 60 y Total Moderate & severe disability 0-14 y 15-59 y 60 y

0,7 2,7 10,2 2,9

0,4 2,3 8,5 3,2

1,2 3,3 16,9 3,1

0,6 2,6 9,2 2,6

0,7 2,9 12,6 2,9

0,8 2,7 7,2 3,0

0,9 3,0 12,4 2,8

0,5 2,4 10,0 2,7

5,1 14,9 46,1

2,8 12,4 36,8 15,4

6,4 19,1 53,3 15,3

4,5 14,6 44,3 14,1

5,2 16,3 58,8 16,0

4,2 14,3 41,4 16,4

5,2 15,5 53,7 14,0

5,3 13,7 46,7 15,0

15,3 Total Source: WHO, 2011a

So far the picture that appears from the statistics is not very hopeful and it gets worse before it gets better. Because not only does the average African country have a disproportionate number of people and children with a disability, they also lack the resources and the infrastructure to help these people either to rehabilitate or to live their life in dignity with full respect of their human rights. Per 10 000 inhabitants the African continent has only 2,3 physicians, whereas the European region has 33,3 physicians. The same gap can be perceived between low and high income countries with respectively 2,8 and 28,6 physicians per 10 000 population. In 2008 the African countries spend only int. $ 77 per capita (PPP) on health, while the European region spend on average int. $ 1520 per capita. Only the South-East Asia region performs worse (int. $ 46/capita) (WHO, 2011b). So to answer the posed question: the numbers say that Africa has the biggest problems concerning people and children with a disability and the least resources and infrastructure to solve them. Luxury or basic need/right? After the preceding exploration of the situation in Africa the inevitable question arises whether the developing countries should not better focus on basic health care, infrastructure and education in general instead of resolving the problems of disabled children? Should these countries not be primarily concerned about putting a basic educational system on track before concentrating on the more complex problems of disabled children? Is the concern for disabled children not a luxury for developed countries; one which developing countries cannot afford? The answer is no and the two main arguments (besides the ethical) are being elucidated in the following paragraphs. Poverty and disability Although the author recognises that Africa is not one country and that situations vary immensely, there is one thing which is a characteristic of almost the whole of Africa and that is poverty. The statistics from the above section clearly point to a correlation between poverty and disability. This brings out the question what the causal relation is between the two. From earlier research we know that socioeconomic factors are linked with bad health (see for example Boccia, et al., 2011), but also with disability (Nagata, 2007). The poorer and the lower on the social ladder a household or a person
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is, the more difficult it will be to get enough and the right food, to go live in an environment which is conducive for a good health or to find the appropriate medical care (just to name a few factors) (WHO, 2011a). These factors have an even more important impact on children who are still in their phase of development. Hence, on the individual level it is clear that poverty has a deteriorating impact on the health of children and thus whether they are disabled or not. However, the link can also be made at the national level. The poorer a country the less it can invest in its social sectors (education, nutrition, health, etc.) and its medical infrastructure. Thus, as the statistics show, poorer countries will have more disabled people. The causal relation does not only go from poverty to disability but also the other way around. There are various mechanisms which make that (the households of) people and children with a disability become poor. First of all the costs for treatment, assistive devices or adaptations to the house, are a real burden on the often already limited budget of an (African) household. The extra costs can make a difference between having food on the table or not. Another problem is that a disabled person might not be able to go to work (due to her disability or discrimination), so that the household loses an income. And even when he or she has a job, because of discrimination he or she might earn less than others (WHO, 2011a). An additional problem specific for children are the problems that occur when trying to go to school. Sometimes discrimination is the cause but it is also true that not all schools are adapted to the specific needs of disabled children. Examples of possible needed adaptations are: ramps for a wheelchair, broader doors, a sign language teacher, etc. Notwithstanding all the children have a right to education these caveats often result in disabled children not being able to enjoy this basic right. UNESCO estimates that more than 90% of children with disabilities are not enrolled in school (UNESCO, 2003). As a consequence, without education these childrens chances for a future out of poverty diminish drastically. This makes them and their children again more vulnerable for health problems that might cause disability. (Nagata, 2007) This vicious circle is very hard to break out of without proper guidance from the community and the state. It is here where the universal human rights come in to play.

Disability

Poverty
Human Rights and education for disabled children Several international human rights conventions are applicable to education for disabled children: the International Covenant on Economic, Social and Cultural Rights, the Convention against Discrimination in Education, the Convention of the Rights of Children and the Convention of the Rights of Persons with Disabilities. The first, and most encompassing, covenant states that the States Parties recognize the right of everyone to education (art. 13). There is no reason to think that disabled children do not fall under the category everyone. This statement is rather general; however the other conventions dig more deeply into the problem we are addressing here: the Convention against Discrimination in Education states that no distinction can be made which has

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Article 1 () the purpose or effect of nullifying or impairing equality of treatment in education and in particular: (a) Of depriving any person or group of persons of access to education of any type or at any level; (b) Of limiting any person or group of persons to education of an inferior standard; (c) Subject to the provisions of Article 2 of this Convention, of establishing or maintaining separate educational systems or institutions for persons or groups of persons; or (d) Of inflicting on any person or group of persons conditions which are incompatible with the dignity of man.
Convention against Discrimination in Education

It is clear that, for example, depriving disabled children from access to school buildings where they can receive education, is a big infringement on their basic human rights. However, this convention needs updating since the enumeration of bases upon which it is not allowed to discriminate does not explicitly include disabled children. Nonetheless, there are other conventions that do focus on disabled children. The Convention on the Rights of the Child is one of them. In article 23 it states that: Article 23 1. States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child's active participation in the community. (...) 3. Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education (...) in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development. (our emphasis)
Convention on the Rights of the Child

The last convention we look into is the Convention on the Rights of Persons with disabilities, which is the most specific towards children with a disability. This convention is also the most recent since it only got adopted on 13th August 2006 and it filled in a severe lacuna in the human rights repertoire. Up until 5th July 2011 149 countries signed and 102 countries ratified the convention. Some of the more important articles are the following: Article 9 Accessibility 1. To enable persons with disabilities to live independently and participate fully in all aspects of life, States Parties shall take appropriate measures to ensure to persons with disabilities access, on an equal basis with others, to the physical environment, to transportation, to information and communications, (...) and to other facilities and services open or provided to the public, (...). These measures, which shall include the identification and elimination of obstacles and barriers to accessibility, shall apply to, inter alia: a. Buildings, roads, transportation and other indoor and outdoor facilities, including schools, housing, medical facilities and workplaces; (...)
Continues

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Article 24 Education 1. States Parties recognize the right of persons with disabilities to education. With a view to realizing this right without discrimination and on the basis of equal opportunity, States Parties shall ensure an inclusive education system at all levels and lifelong learning directed to: (...) 2. In realizing this right, States Parties shall ensure that: a. Persons with disabilities are not excluded from the general education system on the basis of disability (...); b. Persons with disabilities can access an inclusive, quality and free primary education and secondary education on an equal basis with others in the communities in which they live; c. Reasonable accommodation of the individuals requirements is provided; d. Persons with disabilities receive the support required, within the general education system, to facilitate their effective education; (...) (our emphasis)
Convention on the Rights of Persons with disabilities

What is important about these articles is that they compel the state parties to act actively to ensure an inclusive education system. This acknowledges the important role the governments play in respecting the human rights of disabled children. It can and may not be a sole task of some nongovernmental organisations. As it is clear from the preceding paragraphs, making sure that disabled children have equal access to education as their counterparts without disabilities is not a sole luxury for well-developed countries not is it some benevolent by moral and ethics guided undertaking for governments. It is essential in the building up of a country, for combating poverty and for reaching out to the poorest. Moreover is it central to a democracy which abides to human rights and does not only passively but actively promotes them without any discrimination. Putting human rights in the center, is putting people in the center At this point we found that the situation concerning disabled children in Africa is worse than in other parts of the world. Furthermore, the statistics of the WHO show that African countries invest proportionally less than higher income countries in the health sector. At the same time they lack the needed infrastructure and human resources. It is also known that disabled children can have difficulties to attend school or get a proper education. In the second part it became clear that attention for proper education for disabled children is not an article of luxury, but a basic human right and essential for an economy which needs all the talents it has. This raises a new question, namely how can these countries which often lack the necessary resources and expertise live up to their obligations as human rights respecting democracies? These developing countries do not have to carry the burden all by themselves. The human rights conventions emphasize the important role that international cooperation has to play. In the preamble of the Convention on the Rights of Persons with Disabilities it states that the State Parties recognize the importance of international cooperation for improving living conditions of persons with disabilities in every country, particularly in developing countries. Article 32 elaborates on this provision: Article 32 International cooperation 1. States Parties recognize the importance of international cooperation and its promotion, in support of national efforts for the realization of the purpose and objectives of the present Convention, and will undertake appropriate and effective measures in this regard, between and among States and, as appropriate, in partnership with relevant international and regional organizations and civil society, in particular organizations of persons with disabilities. Such measures could include, inter alia:
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a. Ensuring that international cooperation, including international development programmes, is inclusive of and accessible to persons with disabilities; b. Facilitating and supporting capacity-building, including through the exchange and sharing of information, experiences, training programmes and best practices; c. Facilitating cooperation in research and access to scientific and technical knowledge; d. Providing, as appropriate, technical and economic assistance, including by facilitating access to and sharing of accessible and assistive technologies, and through the transfer of technologies. ()
Convention on the Rights of Persons with disabilities

So, more than just a moral obligation or some kind of debt put on them because of colonialism, international cooperation and development aid to help respect human rights are internationally acknowledged duties of the developed countries (Mji, MacLachlan, Melling-Williams, & GCaza, 2009). The human rights conventions appeal to the universality of and the solidarity among humankind and thus require people from developed countries to help people from less developed countries. The international donor community has long disregarded the issue of disabled people and although the last decade has seen an interesting rise in attention from donors to the issue, they are still not completely ready to fully take up this task. What is needed in the international cooperation is a paradigm shift, which was already professed by former secretary-general of Amnesty International Irene Khan (2009). This shift means putting human rights at the center of development cooperation 1. Present development policies concentrate primarily on poverty reduction. This is however like a cyclist who is confident about finishing the Tour de France after having explored the first and the last stages, but forgetting that between them lay inter alia the Garibier and LAlpe d Huez. A human rights approach (HRA) towards development focuses exactly on these climbs. This paradigm shift leads to putting people in the centre of development. Participation of all the stakeholders and those who are affected is essential to this HRA. In this particular case it leads to seeing disabled children as active subjects instead of passive objects (Parnes, Cameron, Christie, Cockburn, Hashemi, & Yoshida, 2009). It puts disabled children if not in the drivers seat, at least in the passenger seat next to the driver. This is something the Convention on the Rights of People with Disabilities acknowledges: Article 7 Children with disabilities (...) 3. States Parties shall ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right. (our emphasis)
Convention on the Rights of Persons with disabilities

It also lies within the latest developments in development policy with more focus on ownership and participatory policy processes. Moreover, it answers to the demand of some authors on development for more participation of local people and organisations in the decision making process concerning development (see for example Zewde, 2010 and Ellerman, 2005). Mmatli (2009) sees the participation of disabled people and children as a matter of human rights, social justice, and respect for human dignity (p. 17). The same author emphasises that they are the principal stakeholders and that they are experts when it comes to knowing their needs and understanding their aspirations although they might know nothing about politics. Hence, participation is not only desirable from a moral, human rights or democratic point of view, but also from a policy effectiveness and efficiency point of view.

The Millennium Development Goals are in this context a small step forward.

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It is important that not only adult disabled persons are included in the decision-making process but also children with disabilities, because disability has different implications at different moments of life (Parnes et al., 2009). Especially in education, since teaching methods and curricula change over time and these bring up new challenges for children with disabilities. For example, the introduction of computers in class rooms may create new obstacles to children with seeing problems or the construction of new buildings with different floors may make it difficult for disabled children in wheelchairs to reach their classroom. Another element is the possible discrimination to attend school they might encounter; children might be afraid to talk about it spontaneously. In all these cases an approach which puts the child in the centre can identify these problems more easily and resolve them. The Community-Based Rehabilitation (CBR) programme is such an approach. It is a strategy within general community development for the rehabilitation, equalization of opportunities and social inclusion of all people with disabilities. (WHO, 2004) Although it is not directly focused on education, it has been proved to increase the social integration and attitudes in the community, because it places equal emphasis on inclusion, equality and socio-economic development as well as rehabilitation (Chappel & Johannsmeier, 2009). This approach acknowledges that the participation of disabled people and their organizations is essential to change the whole environment so that nobody is actively or passively discriminated against and mobilizes the whole community to develop inclusive primary education (WHO, 2010). At the basis of the CBR approach lays the understanding that disability is mainly perceived as such in relation with discrimination and social exclusion (social model of disability). CBR-workers work intensively with disabled people to understand their situation and change it together. Ownership by the latter of their integration process into the community is essential to this approach. At the same time, CBR tries to improve the relations between the people with disabilities and the community to foster the social integration of the former. It is thus a holistic approach, which is cross-sector and multi-level: it focuses on health, education, politics, etc and deals with the individual as well as the community, civil society and the national level. CBR is thus the perfect approach to improve the lives of the often most invisible group in society, disabled children. It makes the children more confident and gives them a voice in the things that affect them directly. It opens the way to fulfilling their human rights, which were all too long ignored by local governments and donors alike. Conclusion: limits and obstacles to overcome We saw that disability is more prevalent in Africa than in other regions of the world. At the same time these countries seem to have the least resources at hand. We also saw that disability is mainly a problem of discrimination and social exclusion: more than 90% of disabled children do not attend school. At the same time we found that working towards the full inclusion of disabled children and people into society and the community is not only the moral right thing to do. It makes economical sense since the poorest countries need all the talents they have; it is also a democratic plight to secure the human rights of all people, disabled children included. The human right to education is in this regard the most vital and most obvious. Next we saw that the human right conventions give an obligation to developed countries to help the developing countries to respect the human rights of the people. We ended by promoting the community-based rehabilitation approach as an instrument to give disabled children a voice in the decisions that affect them and to foster their inclusion into the community and the society through respect for their human rights. However, this approach has its limits and there are plenty of obstacles to overcome. A first obstacle is that the approach is very intensive, so it will need more people in Africa on the ground and less in the donor capitals and New York and Geneva. At the same time general action remains needed at all levels (sub-national, national, regional and global) as well as in all sectors (general education, health systems, infrastructure, etc.). Hence it is very time and money consuming, which brings up the problem of resource allocation in times where development aid is often a weapon of foreign policy instead of bringing development or fostering the respect of human rights. Another obstacle to get rid of is the lack of organizations by and capacity of disabled people, a fortiori disabled children. If we are going to work together with the organizations of disabled people, we first have to make sure that they exist. Therefore it will be important to actively bring disabled
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persons and children together to discuss their problems and give voice to their grievances. This is also acknowledged by the CBR guidelines. A final obstacle is the increasing emphasis on managing for results and statistical proof of the results. Many of the goals of CBR are not clearly quantifiable, like increased self-respect, ameliorated and adapted education or a more positive attitude of the community. Furthermore, progress is often only perceivable in the long term. This may lead decision-makers to conclude that the approach is not working and should be stopped. This is what happened to the community-based development programs in the 1960s. However, development is a long term goal and there are no shortcuts towards it. These problems are not insurmountable, but they do need a mentality change from the main bulk of development workers and decision makers. Positive trends are the increasing emphasis on participation, the situation of disabled people and human rights (cfr. the MDGs). Negative trends are the increasing focus on quick and statistical evidence of effectiveness. References Boccia, D., hargreaves, J., De Stavola, B. L., Fielding, K., Schaap, A., Godfrey-Fausset, P., et al. (2011). The Association between Household Socioeconomic Position and Prevalent Tuberculosis in Zambia: A Case-Control Study. PLoS ONE , 6 (6), 1-11. Chappel, P., & Johannsmeier, C. (2009). The Impact of Community Based Rehabilitation as Implemented by Community Rehabilitation Facilitators on People with Disabilities, their Families and Communities within South Africa. Disability and Rehabilitation , 31 (1), 7-13. Ellerman, D. (2005). Helping People Help Themselves: From the World Bank to an Alternative Philosophy of Development Assistance. Michigan: The University of Michigan Press. Khan, I. (2009). The Unheard Truth. Poverty and Human Rights. New York: W.W. Norton & Company, Inc. Mji, G., MacLachlan, M., Melling-Williams, N., & GCaza, S. (2009). Realising the Rights of Disabled People in Africa: An Introduction To The Special Issue. Disability and Rehabilitation , 31 (1), 1-6. Mmatli, T. O. (2009). Translating Disability-Related Research into Evidence-Based Advocacy: the Role of People with Disabilities. Disability and Rehabilitation , 31 (1), 14-22. Nagata, K. K. (2007). Guest Editorial: Perspectives on Disability, Poverty and Development in the Asian Region. Asia Pacific Disability Rehabilitation , 18 (1), 3-19. Oliver, M. (1996). Defining Impairment and Disability: Issues at Stake. In C. Barnes, & G. Mercer, Exploring the divide (pp. 29-54). Leeds: The Disability Press. Parnes, P., Cameron, D., Christie, N., Cockburn, L., Hashemi, G., & Yoshida, K. (2009). Disability in Low-Income Countries: Issues and Implications. Disability and Rehabilitation , 31 (14), 11701180. Schneider, M. (2009). The Difference a Word Makes: Responding to Question on 'Disability' And 'Difficulty' in South Africa. Disability and Rehabilitation , 31 (1), 42-50. UNESCO. (2003). Gender and Education for All: The grand Leap to Equality. Paris: UNESCO. UNSTAT. (2011, March 2). Washington Group on Disability Statistics. Opgeroepen op June 30, 2011, van United Nation Statistics Division: http://unstats.un.org/unsd/methods/citygroup/washington.htm WHO. (2004). CBR: A Strategy for Rehabilitation of Opportunities, Poverty Reduction and Social Inclusion of People with Disabilities, Joint Position Paper 2004. Geneva: WHO. WHO. (2010). Community-Based Rehabilitation: CBR Guidelines. Geneva: WHO. WHO. (2011a). World Report on Disability 2011. WHO. Geneva: World Health Organization. WHO. (2011b). World Health Statistics 2011. Geneva: World Health Organization. Zewde, A. (2010). Sorting Africa's Development Puzzle: The Participatory Social Learning Theory as an Alternative Approach. Lanham, Maryland: University Press of America.

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