The lives of children with disabilities in Africa: an overview of challenges and opportunities

1. The lives of children with disabilities in Africa: an overview of challenges and opportunities ShimelisTsegaye Senior Policy Research Specialist The African Child Policy Forum 19 March 2011

2. “Living with disabilities makes life a series of perpetual negotiations, not only with doorways or stairs but also with languages, stares, assumptions and policies … daily survival for many people with disabilities requires them to work with needs and feelings of the non-disabled” (Holmes 2001:27).

3. PRESENTATION OUTLINE • ACPF’S WORK ON DISABILITY • ACPF’S IDEOLOGICAL ORIENTATION VIS-À-VIS DISABILITY • BACKGROUND • EXTENT OF DISABILITY IN AFRICA • CAUSES OF DISABILITY IN AFRICA • CHALLENGES & OPPORTUNITIES • INADEQUATE LAWS AND POLICIES • DEBILITATING DISCOURSE AND ATTITUDE • LIMITED ACCESS TO SERVICES • HOUSEHOLD POVERTY • SOME OPPORTUNITIES • CONCLUSION AND PRIORITIES FOR ACTION

4. THE work of Acpf on disability • An overview on the situation of children with disabilities-as part of ARCW 2008 • A retrospective assessment into violence against cwd’s • Cameroon, Ethiopia, Senegal, Uganda and Zambia • Surveys in four countries on the life situation of children with disabilities • Ethiopia, Senegal, South Africa and Uganda • Studies on the state of laws & policies related to children with disabilities, with emphasis on education • Central African Republic, Ethiopia, Sierra Leone, South Africa and Zambia

5. OUR Theoretical/ideological orientation • THE POST-STRUCTURAL/RADICAL STRUCTURAL PARADIGM • Disability as a cultural and political construct • Disability needs to be decoded and deconstructed in order • to set forth the basic orientations and unstated • assumptions about disability and people with disabilities. • Rejects the impairment-disability dualism • it focuses on cultural artifacts and texts to understand • what is happening DISABILITY THEORY OF SOCIAL PATHOLOGY • Environmental approach • (consequence of environmental factors and service arrangements) • Treatment: through increased individual control of services and supports • Prevention: through elimination of social, economic and physical barriers • Social responsibility: to eliminate systemic barriers • Human rights approach • (consequence of social organisation and relationship of individual to society) • Treatment: through reformulation of economic, social and political policy • Prevention: through recognition of conditions of disability as inherent in society • Social responsibility: to provide political and social entitlements

6. Some figures • In any one country at least one person in 10 is disabled by physical, mental or sensory impairment • At least 25 per cent of any population is adversely affected by the presence of disability. • Half a million children go blind every year, of whom 60 per cent die in childhood, leaving a total of about 1.5 million, of whom four-fifths live in the developing world • Between 1999 and 2006, 35 per cent 2-9 year-olds in Djibouti, 31 per cent in Central African Republic and 23 per cent in Sierra Leone lived with at least one reported disability

7. Major causes • Poverty and inadequacy access to basic health services –hence most causes are preventable with little investment: • 85 per cent of visual impairment and 75 per cent of blindness can be prevented or cured (WHO 2009 cited in ACPF 2010a). • 50 per cent of all cases of deafness and hearing impairments are avoidable through prevention, early diagnosis and management of diseases such as meningitis, measles, mumps, chronic ear infections, malaria and tuberculosis (WHO 2010 cited in ACPF 2010a). • Asphyxia during birth, often resulting from the absence of a skilled attendant, leaves an estimated 1 million children with learning difficulties and impairments such as cerebral palsy (UNICEF 2008b cited in UNESCO 2010).

8. Causes … cont’d • Maternal iodine deficiency leads to 18 million babies being born with mental disabilities and deficiency in vitamin A leaves about 350,000 children in developing countries blind •  About 70 per cent of cases of spina bifida – a disability that affects from 1,000 to 3,000 children per million in Africa – are preventable if folic acid supplements are taken by women before and after pregnancy and during the first trimester • Armed conflicts • 350-500 people become amputees due to landmines every day • over 20,000 people in Sierra Leone suffered amputations during the civil war

9. Opportunities & challenges • Encouraging – but limited- law and policy frameworks • A general zeal to ratify International and RHRI • Generic constitutional protections ensured • Specific legislation put in place in some countries • Most legislation littered with deficit and biomedical discourses – not in keeping with IRHR standards • Laws and policies seldom concretized through specific strategies and programmes • Limited funding- disability at the tail of funding priorities • an attempt to link investment to future economic productivity of cwd’s or to provide for their needs as cheaply as possible - as the burden of the ‘normal’ tax payer

10. Attitude and discourse • Negative societal and expert attitude & belittling discourses still prevalent • In the Kisangani dialect of Lingala (DRC), the termmakutumafwais used to refer to people with visual impairments, and literally means“one with dead eyes”.Makutuveis used to refer to people with hearing impairments, and can be literally translated as “one without ears” (Wa-Mungai 2009). • donkoroinAmharic – in Ethiopia – is used to refer to the hearing impaired, and literally means “one who cannot understand” or “idiot” • Tendencies to hide cwd’s from public purview • Children in some communities are kept shackled in windowless storerooms, hot household courtyards with little or no interaction, even with those within the household • More than 79 per cent of children with visual impairments are not registered in Ethiopia, while in Uganda, about 79 per cent of children with multiple disabilities are not registered at birth.

11. Attitude … cont’d • Systemic concealment of pwd’s-spatial shifting of ‘the problem’ of disability & spatial discrimination-the way buildings and other public facilities are designed and built, which tend to effectively exclude persons with a certain type of disability from entry • Marking ‘otherness’ through spatial demarcations and social practices of categorisation and the ordering of groups in society – e.g. mentalasylums and residential/institutional care systems, special schools • Spatial markers which set them apart, socially estranged and outside the mainstream of society, effectively

12. Attitude … cont’d • Demonizing & criminalizing tendencies still prevalent • In Central Afri. Rep., boys with physical deformities or with autism are accused of being witches and subjected to abuse • In that country, witchcraft is a criminal offense under the penal code, punishable by execution in cases where the ‘witch’ is accused of homicide • Article339(2) of the Ethiopian Civil Codeequates the mentally disabled with drunkards, drug addicts and spendthrifts. • Drug addiction is a criminal offense punishable by imprisonment & a fine (Article 525(4)(b) of the Ethiopian Criminal Code) • In some cultures, persons accused of wrong doing such as theft and adultery would have their hands cut off as a punishment. • zeruthe Swahili word for ghostis used to refer to Albinos

13. challenges • Violence still common • children with disabilities are less likely to be able to protect themselves, flee from attackers, or report attackers to the police. • girls with hearing and speech impairments could be seized by assailants and – given their inability to scream – victimised with relative ease. • In some cases, witnesses were seen as being ‘incompetent’, when in many cases the level of language used in court proceedings was in fact too complex, and incomprehensible to many of the victims • Some force cwd’s for begging

14. Violence … cont’d • The heart-breaking plight of albinos - Albinos are hunted to death for their flesh and blood believed to add potency to black magic rituals, or to bring good fortunes - tens of thousands in hiding • Miners for gold, rubies and mineral tanzanite are said to pay large sums for charms made with a potion mixed from albino body parts. • Fishermen believe if they weave the red hair from an albino into nets, fish will be attracted by the glimmer • A complete dismembered body, including all limbs, genitals, ears, tongue and nose, sells for up to $75,000

15. challenges • Limited access to health and education services • Many of the children live in households that suffer severe deprivation • Live in inaccessible and ill-adapted housing • 98 per cent of parents of children with disabilities surveyed in Senegal reported that the doors of their houses were not wide enough to allow free mobility • only 9 per cent of children with disabilities in Ethiopia surveyed were reported to have access to appropriately modified toilets. • Lack of assistive and adaptive devices -in Ethiopia, the average cost of crutches is about USD 8, and a wheel chair costs USD 224 • Inaccessible school and health infrastructures • In some schools visited in Sierra Leone- disabled children have to crawl to the toilet or be carried on the back of their peers • Poor access to water and sanitation services

16. Challenges … cont’d • VERY FEW CHILDREN GET ACCESS TO SCHOOL • 76% of children with disabilities in Sierra Leone are out of school; in Ethiopia less than 1% of disabled children have access to education; 67% of children with disabilities aged 6-14 years are not attending any form of schooling in the Central African Republic; in Senegal, 64% of child respondents to the ACPF survey did not attend school at all, and 55% had never had the opportunity to attend. • EPISTEMIC ACCESS DEPLORABLY LOW • The majority lack proper assistive educational devices • A ream of Braille paper in Zambia costs Kwacha 300,000 (equivalent to USD 64), while an ordinary ream is about Kwacha 30,000 (equivalent to USD 6.4) – ten times less expensive. • In Ethiopia, an imported hearing aid has an estimated cost of about USD 160 • A lack of teachers proficient in sign language and the limited pedagogic involvement of parents – mainly attributed to limited parental education and the inability of parents to communicate in sign language • Inappropriate school environment & infrastructure

17. Opportunities • Social assistance in the form of the Care Dependency Grant (CDG), a non-contributory monthly cash transfer of approximately 144 USD per month to caregivers of children with disabilities who receive permanent care. • Fee-abolition encouraging school participation • School-feeding programmes–addressing nutritional and intellectual challenges • Commendable awareness creation campaigns – mainly NGO-driven • Tough legal measures on abusers seen in some countries

18. SEVEN priorities for action • A deep level of political commitment and a fundamental shift in thinking and practice at both state and individual levels • Challenge negative attitudes to disability, through public sensitisation and education programmes • Put in place appropriate legislation & policy in keeping with current human rights and disability thinking & practice • Build the capacity of disability organisations for self-advocacy • Ensure adequate funding for: • Improving & expanding existing services for children with disabilities & for providing a skilled supply of relevant personnel; • Invest in both preventive and curative healthcare programmes and nutritional interventions; and attain efficiency through inter-sectoral co-ordination • Reduce household poverty, through cash and in-kind transfer programmes • Put in place proper research, data collection and monitoring systems

19. Thank you!