Shimelis Tsegaye Senior Policy Research Specialist ACPF March 2012

1. The rights of Children with disabilities: an overview of international & African human rights instruments ShimelisTsegaye Senior Policy Research Specialist ACPF March 2012

2. Presentation Outline • Rights of children with disabilities related to: • Adequate standard of living and health • Equality & non-discrimination • Protection from abuse and violence • Accessibility • Access to education • Limitations of existing normative frameworks • Conclusions & recommendations

3. Adequate standard of living & special care UNCRC (art 23 & 24); art 13 & 14 ACRWC; UNCRPD (Art 28); ICESCR, Committee GC 5 (para 33) • Enjoyment of a full and decent life • Ensuring dignity and self-reliance • Access to healthcare • Access to basic services such as food, shelter & clothing • Access to special care and assistance

4. Equality and non-discrimination General equality and non-discrimination provisions : ACRWC (art 3); UNCRC (art 2); ICESCR (art 2(2)) • Equality of all children • The right of all children to fully enjoy their fundamental rights • Access to socioeconomic and cultural rights without discrimination Specific disability-related non-discrimination provisions: Art 6 & 7 (UNCRPD); CRC Committee GC 9 (para 9); ICESCR Committee, GC 5 (para 18) • Disability as a forbidden ground for discrimination • Preventing de facto discrimination of children with disabilities • Undoing existing discrimination and establishing equitable opportunities for persons with disabilities • Recognizing the multiple forms of discrimination of women with disabilities

5. Protection from violence and exploitation- UNCRPD (art 16(1), (2), (4) & (5); CRC Committee, GC 9 (para 43); the African Women’s Protocol (art 23 (a) & 9b) • Preventing violence and exploitation • Investigating & prosecuting cases of abuse • Special protection of women & girls with disabilities • Treatment, recovery and rehabilitation of victims of abuse

6. Accessibility In a society of wheelchair users, stairs would be non-existent, & the fact that they are everywhere in our society seems an indication only that most of our architects are able-bodied people who think unseriously about access”~Siebers2011 UNCRPD (art 2, 9 (1) & 21 );ACRWC (art 13(3)); CRC Committee, GC 9 (para 37) • Access to buildings, roads, transportation • Access to information & communications • Universal design of products, environments, programmes and services

7. Access to knowledge about one’s disability CRC Committee, GC 9 (para37): Children with disabilities and their caregivers should have access to information concerning their disabilities so that they can be adequately educated on the disability, including its causes, management and prognosis. This knowledge is extremely valuable as it does not only enable them to adjust and live better with their disabilities, but also allows them to be more involved in and to make informed decisions about their own care.

8. Access to education UNCRPD (art 24); UNCRC (art 28); ACRWC (art 11); ICESCR, Committee GC 5 (para 35) • Access to inclusive education • Access to free basic education without discrimination • Access to individualized educational support • Access to assistive and adaptive devices • Availability of well-trained teachers

9. Limitations of existing international & African child rights instruments as they relate to children with disabilities • Prevention of impairments poorly addressed – considered a taboo • Treatment of harmful traditional practices related to children with disabilities not comprehensive enough • Existing child rights frameworks not available in disability- & child-friendly formats

10. Preventing impairments- is it a taboo? Article 25 … States Parties shall: • Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population-based public health programmes; • Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons [emphasis added].

11. Why is prevention so crucial? • 75 % of blindness in Africa can be prevented or cured • Maternal iodine deficiency leads to 18 million babies being born with mental disabilities • 50 % of all cases of deafness and hearing impairments are avoidable through prevention, early diagnosis and management of meningitis, measles, mumps, chronic ear infections, malaria and TB • Asphyxia during birth leaves about 1 million children with learning difficulties & impairments such as cerebral palsy • 70 % of cases of spina bifida – a disability that affects from 1,000-3,000 children per million in Africa – are preventable if folic acid supplements are taken by pregnant women • More than 20 million are disabled globally because of road accidents every year, a good majority in Africa

12. Some instruments made an attempt to address prevention The UN Standard Rules espouse prevention defined as: action aimed at preventing the occurrence of physical, intellectual, psychiatric or sensory impairments (primary prevention) or at preventing impairments from causing a permanent functional limitation or disability (secondary prevention) (Para 22)

13. Some instruments … cont’d CRC Committee, GC No 9 (para 53, 54 & 55). • Introducing prenatal and natal health-care services for children and expecting mothers • Public education and support for pregnant mothers who may be abusing substances • Preventing dumping of hazardous materials • Preventing road traffic accidents • Clearing up unexploded landmines & keeping children away from suspected areas

14. Harmful traditions & use of degrading language ACRWC (Art 21 (1) (b)): States Parties … shall take all appropriate measures to eliminate harmful social and cultural practices affecting the welfare, dignity, normal growth and development of the child and in particular: b) those customs and practices discriminatory to the child on grounds of sex or other status [emphasis added] UNCRPD (art 8(1)): States Parties: To combat stereotypes, prejudices and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life; • Initiating and maintaining effective public awareness campaigns designed: • To nurture receptiveness to the rights of persons with disabilities; • To promote positive perceptions and greater social awareness towards persons with disabilities;

15. Two excellent legislative examples Art. 33 (1) of the SL Persons with Disabilities Act protects every child against torture or other cruel, inhuman or degrading treatment or punishment, including any cultural practice which dehumanises or is injurious to the physical and mental welfare of the child[emphasis added] The same Act, in its definition of discrimination, includes using “words, gestures & caricatures that demean, scandalise or embarrass a person with disability” [emphasis added]. Art. 53(2) of Zambia’s draft constitution, prohibits: Any law, practice, custom or tradition that undermines the dignity, welfare, interest or status of persons with disabilities.

16. Why are traditional practices important? The example of concealment of children with disabilities • In some communities, families deny the existence of children with disabilities in their household • They keep these children in windowless storerooms, or dark attics for weeks or years, with little or no interaction, even with those within the household UNCRPD (Art 23(3): States Parties shall ensure that children with disabilities have equal rights with respect to family life. With a view to realizing these rights, and to prevent concealment, abandonment, neglect and segregation of children with disabilities, States Parties shall undertake to provide early and comprehensive information, services and support to children with disabilities and their families [emphasis added].

17. National laws against the practice of hiding children with disabilities are non-existent Art. 36 of the Sierra Leone Persons with Disabilities Act, a parent, guardian or next-of-kin or carer who- • Conceals a person with disability, or • fails to register a person with disability, commits an offence and shall on conviction be liable to a fine not exceeding two million leones [~ USD 462] or to imprisonment for a term not exceeding one year or to both such fine and imprisonment.

18. Lack of birth registration is a factor in concealment • 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. • Birth at home contributes to children not being registered at birth: about 47 % of births in SSA take place at home CRC GC 9 (para 35): Children with disabilities are disproportionately vulnerable to non-registration at birth. Without birth registration they are not recognized by law and become invisible in government statistics … Children with disabilities who are not registered at birth are at greater risk of neglect, institutionalization, and even death.

19. Birth registration provisions UNCRC (art 7) & ACRWC (art 6(2)): Every child the right to be registered immediately after birth. UNCRC GC 9 (para 36): In the light of article 7 of the Convention [UNCRC], the Committee recommends that States parties adopt all appropriate measures to ensure the registration of children with disabilities at birth. Such measures should include developing and implementing an effective system of birth registration, waiving registration fees, introducing mobile registration offices and, for children who are not yet registered, providing registration units in schools. Art. 18(2) (UNCRPD) Children with disabilities shall be registered immediately after birth and shall have the right from birth to a name, the right to acquire a nationality and, as far as possible, the right to know and be cared for by their parents.

20. Normative frameworks not available in disability-friendly formats • UNCRC General Comment 9 (para26): Knowledge of the Convention and its specific provisions devoted to children with disabilities is a necessary and powerful tool to ensure the realization of these rights. States parties are encouraged to disseminate knowledge by, inter alia, conducting systematic awareness-raising campaigns, producing appropriate material, such as a child friendly version of the Convention in print and Braille, and using the mass media to foster positive attitudes towards children with disabilities [emphasis added]. • The Ethiopian Human Rights Commission just completed publishing all international & African human rights instruments in Braille

21. Conclusions & recommendations • Ratification & appropriate incorporation into domestic legislation of human rights treaties • Entrenching implementation requirements, mechanisms & structures through legislation to ensure & link legislative rhetoric to actual service delivery • More stringent treatment of harmful traditions and degrading language related to children with disabilities • Putting prevention on the disability agenda – primary prevention should not be seen as a taboo subject • Birth registration services should be made universally available • Existing human rights and legislative frameworks should be made available in child- & disability-friendly formats

22. Thank you!