2.1 Location and identification of people with disabilities
2.2.1 Disability, family and environment
The notions of family and environment play an important role in the life of an individual.
He or she is partly identified by his or her family and environment. The concept of family in Africa encompasses not only the father, mother and children (as is the case in Western society). An African family is a clan whose members belong together. When somebody is born or becomes disabled, he/she automatically loses his/her clan name so that people do not know where he/she belongs. It is a source of shame to have a disabled child in a family. That person will be called by his physical condition and not, as with able-bodied persons, by a name that makes it possible for others to identify his family, clan and environment.
Zamenga Batukezanga, in his book, Maladie et l’infirmité en Afrique Noire, (Illness and Infirmity in Black Africa), addresses many aspects of perceptions of disability in “black Africa”, especially in the Western DRC.109 In this section, I will outline two factors raised by Batukezanga and I will compare and contrast these with other cultural beliefs, such as
108 Disabled People South Africa (DPSA), An Empowerment tool. Pocket Guide on Disability Equity. Africa Decade of Disabled Persons (DPSA Parliamentary Office, 1999 – 2009), 15.
109 Zamenga Batukezanga, Maladie et l’infirmité en Afrique Noire (Kinshasa: Press Kikesa, 1981), 45.
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those of the Kasai culture (central DRC). These factors are: congenital infirmity and infirmity that occurs in old age.
Congenital infirmity
Generally, it is recognized that a baby has an innocent and pure spirit, and that if something bad happens to him/her, this is the fault of the parents. In Africa, the woman or mother is blamed and condemned. She may be accused of having sexual relations with other men or she might have mocked a disabled person.
If the parents (or the mother) are cleared of responsibility, the family will consult a person who can pinpoint a “witch”. If a “witch” is now found, the disability is declared a religious case and people say, “Maybe God allowed this to happen so that we will be more devoted to him”. In some cases a mother will point the finger at her sister-in-law, as is the case in Kasai culture where the “aunties” on the husband’s side are seen as the most dangerous “witches” in the family, because they have no mercy.110
In some cases, disability would be interpreted as a “choc en retour” (payback). They might say that a disabled person is “revenant” (a ghost), meaning that he/she had died but was chased back to earthly life by the ancestors or by God to come and “payback” for the faults he/she had committed in his/her life. In order to do so, he/she was born or had become disabled.
The above attitudes explain the phenomenon of street children in the DRC, most of who, especially in Kinshasa, are disabled.111 Their parents reject or abandon them because the family or clan has declared that they are “witches”. Other parents hide their children at home, because their physical condition is not accepted in the social environment.
110 I also was told that my physical condition was caused by one of my paternal aunts. To respond to this challenge, I always say as a liberated African that I wish that aunt were still alive so that I could thank her, because God turned her curse into a “benediction” in my life. Today, my “disability” can transform many other lives so that other disabled people will “stand and walk”, and thus my ”problem” is now a sign of hope and responsibility.
111 The testimony of a group of Congolese street musicians called, “Benda bilili” confirms the situation of disabled children being rejected and abandoned by their families. After growing up on the streets, they had an idea to form a music group. They were rehearsing on the street when a group of Western tourists heard them and agreed to sponsor them. Today, they are becoming famous not only as musicians, but their life stories have also
been turned into a film (See Paul Morley, Benda Bilili Movie
<http://www.guardian.co.uk/music/2010/jul/23/paul-morley-showing-off-staff-benda-bilili.htlm> [2011/07/03]
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Infirmity in old age is considered as a “choc en retours” (payback), a punishment, a consequence of sin. When an adult becomes disabled, people distance themselves from and abandon him/her.
There was a time up to the 1970s in the DRC, especially in Kinshasa, at a location called the “Pont Kasa-Vubu”, that a criminal or a thief could be punished by having an arm or leg cut off or sometimes by being killed in public. Since that time, people who have had a limb amputated of are considered as criminals. People say to them: “People like you do not deserve life”. As a result these people are abandoned by society.
This is why even though a person with a disability is admitted in society, for example to work or study; his/her condition remains a challenge and raises questions. For example, people with disabilities are stopped on the market, in shops or public places, and asked
“What happened to your leg?” Or “what happened to your life?” And when you do not give a complete response, they will say: “Pray God to forgive you” or “Behave properly and nature will heal you”. This shows that the concept of disability is in the African socio- cultural environment defined by myths and legends of wrongdoing and punishment.
In addition, in some cases, disabled persons were considered as “sacred persons”, as a
“protector of the family” or a “prophet”. This is the case of “muana mayi” and “bisimbi”, (referring to people with deformed bodies or faces), in French called,
“ancephalopathe”.112 These people are considered as supporters or protectors of the family and society. Hence the name of the national soccer team “Simba”, which derived from the verb “simbi”. The legend goes that, as most “bisimbi” have difficulty in walking properly, they will lend their legs to the soccer players so that they will perform at their best. At one time “Simba” was counted among of the better teams in Central Africa.
In the southern DRC, the blind were considered to be “sacred persons” and “prophets”. In that area, even today, people fear and respect blind people.
112 Batukezanga, Maladie et infirmite, 1981, 18.
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According to DRC mythology, sensory infirmities (namely, blindness, deafness, dumbness) were caused by touching or discovering a “sacred object” that was not supposed to be seen or touched.