Basotho ontology of disability: An afrocentric onto-epistemology

Abstract

This theoretical article offers a diachronic analysis that is a rebuttal of ontological hegemony of disability as negative. The article is premised on the Ubuntu paradigm from which African wisdom is mostly anchored in idioms and proverbs. This article emerges as a reflection on a Sesotho proverb: Sehole ho ‘Ma-sona ha se lahloe (A child with a disability is never abandoned by the mother). The aim of this article is to demonstrate that Basotho ontology of disability portrays an ubuntu cultural acceptance of people with disabilities as equally human as all human beings. A purposive focus group sample of ten parents of youth with intellectual disability discussed the proverb and shared their experiences of raising a child with disability; and, what the proverb: Sehole ho ‘Ma-sona ha se lahloe mean to them? The qualitative data from the focus group was used to support the theoretical adaptation of Basotho ontology in revising the current understanding of disability. The themes reported in this article are: experiences of raising a child with intellectual disability and a child's love begins with a parent.

Basotho, Disability, Onto-epistemology, Paternalism, Proverbs, Sehole, Ubuntu feminism

1. Introduction

Indigenous ontologies have for many centuries endured epistemological subjugation from Euro-Western epistemologies (Bereng, 1982, p. 91). These indigenous ontologies within the field of disability, encountered “oppressive discourses of disability” which side-lined indigenous knowledge systems (Parsloe, 2015, p. 338). The Basotho are known for being caring people renowned for espousing peace and love for fellow human beings based on the philosophy of ubuntu (Letseka, 2012). While doing a post-graduate diploma in disability studies at one university in South Africa the author became acutely aware of the hegemony of Euro-Western ideologies in the field of disability. African onto-epistemologies were hardly represented in the understanding of disability and knowledge creation about it. The author was particularly challenged and decided to find indigenous ontologies that represented disability. As a Mosotho, growing up surrounded by disability, one recalls positive experiences one had with an old man who was born blind and was a friend of the family, and another young man the author grew up with (Sefotho, 2013). Retrospectively, the author's memory led to other persons with disabilities around the community who were treated with respect and care.

The Sesotho proverb: Sehole ho ‘Ma-sona ha se lahloe, became the vantage point from which the author could reflect on the meaning of disability from the Basotho worldview. The proverb carries a philosophical ontological meaning for Basotho. Contrary to a heavy skew towards negativity ascribed to disability, the Basotho ontology brings about a positive disposition that promotes inclusion of children with disabilities in society. The Basotho ontology is contrasted with “oppressive discourses of disability”, that illuminates “disability in culture” from a more pro-social and transformational perspective (Parsloe, 2015, p. 340).

This study emerged as an attempt to garner responses from a strategically selected number of Basotho who have children with intellectual disabilities to discuss the meaning of the proverb: Sehole ho ‘Ma-sona ha se lahloe. The article consequently builds the argument around: The philosophy of ubuntu's Basotho ontology of disability, Basotho ontology of mother-child connectedness, ontology as representation of reality, social ontogenesis, Basotho onto-epistemological conceptualisation of childhood, contemporary challenges of the indigenous/traditional ontologies, paternalism and child development and Ubuntu feminism.

2. Theory

Theory introduces Basotho ontology of disability as an alternative frame of reference to disability in this article (Jaakkola, 2020). The rationale to change perception of disability as negative to viewing it as positive life experience encourages inclusion of people with disabilities in all spheres of life (Rohwerder, 2015). This is required if their rights will be placed centre stage. The Basotho ontology of disability helps in revising current understanding of disability as negative.

2.1. Basotho ontology of disability

Basotho perceived disability traditionally as (bo-bopuoa), meaning; God's creation. This means, everyone is created equally by the creator and deserves to be treated as equally human. However, Basotho also hierarchically classified human beings. First in the line of importance were the chiefs, sages, elders, traditional healers, worriers and then the general populace. Among the people who deserved the protection and guidance were women, children, and the elderly, those with mental problems and people with disabilities (Sefotho, 2021).

Ontology is the “science of being…the most comprehensive of all sciences, insofar as it covers everything that exists” (Busse et al., 2015, p. 29). It is the philosophical study of the nature of being, existence or reality as perceived and interpreted by the perceiver. The author in this article uses the philosophical and not the information scientific notion of ontology. In information science, ontology is used to understand and resolve problems related to philosophy of computer science dealing with problems and questions around the physicality or non-physicality of information (Gruner, 2011). “In philosophy, ontology is the basic description of things in the world, the description of what is said to truly exist” (Fonseca, 2007, p. 790). Ontology represents our sense of reality about an entity or a phenomenon, for example, our sense of reality about disability. It is about what disability represents in our view.

Smith (2003, p. 2) explains that ontology can be understood based on the different philosophical schools of thought such as “substantialism (thing), fluxism (event or process), and adequatism (taxonomy).” In this article, understanding of the Basotho ontology of disability is analysed through substantialist and fluxist ontological perspectives. Substantialism considers a thing in itself (disability), but does not yet allocate it value. Substantialism accepts aposteriori existence of things, for instance Basotho accept a child as a child, from a substantialist perspective. The child is accepted unconditionally, even if such a child is with a disability. However, there is a paradox regarding non-acceptance of persons with disabilities in most cultures which cannot be overlooked. In many instances, persons with disabilities are culturally ostracised (Adjei, 2013; Shikha, 2017; Rohwerder, 2018). The practice of ostracising persons with disabilities is as old as humankind. Socialisation on disability can either have a positive or negative impact depending on how a society perceives and ascribes meaning to disability. Fluxism propels a process of socialisation, whereby disability begins to be described and given value through ontological pluralism (Turner, 2012). When perceived positively, disability transcends stigma towards empowerment (Mayer (2017), as Wehmeyer (2019) encourages, we “…must go beyond ‘disability’” (p. 3)). When perceived negatively, disability excludes persons with disabilities.

Based on a key proverb in this study: Sehole se setle, ho ‘m’a sona ha se lahloe, Sekese (2011, p. 207) described Basotho parents of children with disabilities as having great love for them, as Basotho positively affirm persons with disabilities. This is a phenomenon also found elsewhere in other cultures. The role of proverbs in literary discourses surpasses that of metaphors. The African Proverbs Project conducted for three years (1993–1996) concentrating on 1497 proverbs from Ethiopia, Uganda, Lesotho, Burkina Faso and Ghana, emphasised the importance of the pedagogical value that can be found in proverbs and used in learning institutions to inform those lacking in indigenous knowledge embedded therein (Mbiti, 2002). Lubinga (2014), further recognises the value of proverbs in that they have the “…capacity to explain complex issues in simple statements [and] create a strong mental imagery, which then serves to motivate action” (p. 18).

Disability continues to be a complex phenomenon, and humanity's acceptance or non-acceptance of it is even a more intricate issue. Conceptions of disability seem to evade hegemonic articulations where only a certain part of humanity could claim the prerogative to prescribe to the world how to conceptualise disability. However, context specific conceptualisations should also be given platforms to share perceptions of disability, which may enrich the general discourse on disability. This article is positioned towards “the (re)-contextualisation of knowledge” about disability within the Sesotho context through the Basotho ontology of mother-child connectedness - Motlopotlo (Naude, 2019, p. 23). The article also re-focuses the gender lens (Harrison et al., 2014), by balancing the responsibility of children's nurturing as the role of both the mother and the father, albeit that the mother may be much closer to the child.

2.2. Basotho ontology of mother-child connectedness - Motlopotlo

For Basotho, disability as a social concept is exemplified through a child whose mother upholds an eternal love and the understanding of the real existence of the child, despite disability. It should be acknowledged that even though Basotho culture is profoundly patriarchal, a mother in the Sesotho culture plays a pivotal role of being the centre that holds the family together. Basotho “…women do have control over their own lives and are therefore the designers of their own future” (Phindane, 2012, p. 207). For instance, long before democratic rule in Lesotho, Basotho already recognised the role of women in running national affairs. Mofumahali Mantšebo became regent after the death of her husband from 1941 to 1960 (Machobane and Karschay, 1990). A Sesotho proverb that mirrors this important role played by women is: Mosali ke Morena, meaning, a woman is a chief (Mokitimi, 1997, p. 18). This comparison can only be given to someone really respected among Basotho, for their chiefs represent a highly respected office.

Basotho believe that a mother and a child are eternally and inextricably united by the act of parturition (motlopotlo in Sesotho). This is later strengthened by a relationship that develops between a mother and a child as they bond. The belief system explains an inseparable bond between mother and child, which pertains only to the two as the mother is the one who initiates care from conception to birth and beyond. The author believes this explains some kind of a telepathic relationship between mother and child. Motlopotlo could be explained through a wealth of Sesotho proverbs which depict a strong relationship between a mother and a child. For example, ‘Ma ngoana o tṧoara thipa ka bohaleng, which translates into: a mother can endure a scathing knife in protection of her child (Mokala, 2020, p. 145). Another proverb, se-aka ngoana ke se-aka ‘mae (Sekese, 2011, p. 207), translates into: one who loves a child, equally loves the mother. The inference here is that not loving the child, translates into not loving the mother. The mother-child connectedness treats love of either as essential to communal acceptance.

Motlopotlo is that strong sense of protection of a child by a mother, similar to the biblical depiction of how a mother's instinct provides for wisdom to make the right decisions to protect one's child. The decision by King Solomon in the Bible to cut the child in half indicated to him who the real mother of the child was, who would not sacrifice the life of her child (Menking, 2017). Although this sense of motherly protection may be universal, it is clearly recognised and deliberately used by Basotho to indicate the strength of the mother-child connectedness, especially in relation to children with disabilities who generally require protection.

2.3. Ontology as representation of reality: a diachronic analysis

From the Greek substantialist ontology, each being's identity is determined by its nature and its otherness from other beings as seen from “Aristotle's dualistic ontological system (which distinguishes between actual and potential being)” (Ropolyi, 2016, p. 40). A diachronic analysis for the purposes of this article represents a conceptual analysis of the Basotho ontology of disability (Dronova, 2015). From the Basotho ontology, the actual is the person and the disability becomes a philosophical accident, while the potential being entails what a person with disabilities can become (Ropolyi, 2016, p. 40). The essence of a philosophical accident in this article connotes that disability exists outside the thisness - a “thisness” (a haecceitas, from the Latin haec, meaning “this”) (Cross, 2014, p. 1) of a person with a disability. “A ‘thisness’ is a particular, primitive, purely non-qualitative property of an object; the property of being a certain object.” (Ingram, 2018, n. p.). It is this ontological reality that represents the reality; ‘thisness’ of each being. Thisness thus, does not differentiate any being from the collective beingness of human beings. Only the accident – disability, differentiates human beings as it is a socially constructed philosophical accident, based on their individuality.

A stern criticism apportioned by Mitchell and Snyder (2000, p. 53) against viewing disability as a problem is concretised in the question: “Why does the “visual” spectacle of so many disabilities become a predominating trope in the nonvisual textual mediums of literary narratives?” This paper is a counter-thesis to Mitchell and Snyder's view (2000). The Basotho narrative through the ontology herein discussed does not focus on the body as deficient, nor on the person with a disability as sub-human. “In African communities, differences are therefore not in opposing ends, but they share experiences of oppression in order to challenge any violations of human dignity” (Chisale, 2018, p. 8). The Basotho ontology of disability accepts people with disability as human and equal to any other. Mofuoa (2019), uses the term ‘Botho’, which designates, among its values, human dignity (p. 103) as the reality of being human. In Sesotho botho or ubuntu represents the highest order of respect for the human being, regardless of whether they are disabled or not (Letseka, 2012, p. 48). It is in this sense that Leshota and Sefotho (2020) embrace the phrase, differently abled, not disabled in order to point out that all human beings have botho/ubuntu that gives them dignity and therefore are essentially respectable.

2.4. Social ontogenesis

Ontogenesis “…as a phenomenon is a philosophical category” (Kovtun, 2013, p. 2). Ontogenesis generally means the origin and development of organisms, and it “…covers all manifestations of living… [focusing on] the beginnings of individuality” (Kovtun, 2013, p. 1–3). Human ontogenesis refers to the beginnings and development of human life, without exceptions, seeing “human development as partly determined by the social ecology in which the development occurs” (Nsamenang, 2006, p. 293). Thus, according to the Basotho social ecology of child development, each child that is born enjoys a particular individuality. However, that individuality is socially constructed as it develops within a particular social ecology. In tandem with this belief, Pérez and Saavedra (2017) call for an onto-epistemological global South conceptualisations of childhood, referred to by Nsamenang (2006) as social ontogenesis. Global South onto-epistemological inclinations essentially advocate for equity in relation to all human life that is, including people with disability. It is also a call to “…acknowledge, recenter, and make visible marginalised epistemologies” (Pérez and Saavedra, 2017, p. 3). However, epistemological scepticisms abound and continue to adamantly hold condescending attitudes towards global South onto-epistemologies. This article sets out to counter this inclination and it aligns with the call made by Pérez and Saavedra (2017) that must fight against contemporary challenges related to indigenous or traditional ontologies. Smith (2004), also encourages going beyond concepts and seeing ontology as reality representation (n. p.).

2.5. Basotho onto-epistemological conceptualisation of childhood

This article is an antithesis to cultural and intellectual colonisation on onto-epistemological bases (Pérez and Saavedra, 2017, p. 1). The spirit of the article is not one of rejection but of finding the middle ground in knowledge creation in order to avoid apportioning “…the blame only on Western thinking” (Waghid, 2015, p. 1). Basotho consider a child as a gift from Molimo – God, and Balimo - the ancestors (Rosenberg, 1998). When a child is born in a Sesotho family, it is welcomed first in the family and then in the community. The child's arrival into the world is announced by a woman ululating the birth in the village (Bereng, 1982). The family makes known the birth of a child by declaring that a Mohlabani – warrior is born to protect the family and the nation. When a girl child is born, Sekhametsi – she who fetches water; is born to water the world. Notably Basotho believe that water is the essence of life. So, essentially, Sekhametsi, brings about life.

Basotho onto-epistemological conceptualisation of childhood, historically plays a critical role in the onto-epistemological contribution it can make to the early childhood discourse in contemporary times. The birth of a child is considered very important among Basotho, and it becomes a communal affair (Moitse, 1994). According to Mokitimi (1997, p. xi), “children confer glory on a home”. This profoundness of the Basotho's love for their children is a direct contrast to attitudes that may label the proverb “Sehole ho ‘Ma-sona ha se lahloe” (A child with a disability is never abandoned by the mother), as paternalistic subjugation of women. Thus, the misinformed views become counter-productive challenges to a forward-looking attitude of Basotho that embraces every child as a child (including one with disabilities) and worthy of being a child like any other. This is supported by Nsamenang's (2006) socio-ontogenesis as an indigenous African view on child development from the global South.

Basotho used onto-epistemological developmental stage of a child through a cosmologically based process of “ho kuruetsa ngoana”, that is, to present the child to the universe by showing the child the moon. This is to establish an intimate ontological relationship (Rakotsoane, 2010, p. 3) that links the spirit of the child to the universe. The one who introduces the child to the moon would say to the child: “Kururu! kururu! Molekana'a hao ke eloa”; crudely translated: behold your age mate (Sekese, 2011, p. 9). This is a developmental process of introducing the child to the universe after the child's umbilical cord has separated from the child (ngoana o bolotse) (Z. Zulumathabo, personal communication, March 13, 2020). The umbilical cord is taken and buried carefully in the ground and it is believed to ground the child to that birthplace, from which a child should never be separated.

Basotho believe strongly in the bond that is established through marriage. The currency used in the establishment of a marriage union was and still continues to be cattle, although currently money is generally more acceptable. The traditional marriage union is expected to have children born of the matrimonial union, but where this norm has been broken and children are born out of wedlock, they are still considered children of the family. This is based on the philosophy emerging from the proverb: Ngoana ke oa likhomo, meaning, a child can be brought into a home through a bond established in marriage (Mokitimi, 1997, p. 5). It is important that a child is recognised as legitimate if cattle have been exchanged between two families. For instance, in a case where one of the partners in marriage happens to have a child outside the matrimonial union, cattle are paid to the aggrieved family as punishment but the child is regarded to belong to the family like any other child.

Basotho parents conceptualise their children as in need of their support eternally. It may not be materially but in cases where material support is required, if parents can afford to provide support they will. A differently abled child will even enjoy more support from the parents as he/she is considered to be in need of support more than other children. The siblings also generally provide support on the basis of Botho/Ubuntu. Many a times, siblings become a very strong support system for the parents. Some would take over and cater for the needs of siblings with disabilities once they start working. Although it becomes difficult once most start their own families, there are some who would continue the support of siblings with disabilities. They might sometimes be considered adoptive parents of their own sibling. Although a person with a disability may be considered in need of support continuously, Basotho believe that such a person should also take their rightful place in society. For example, if one is the first-born in a family, they are eventually expected to take care of the rest of the siblings. In this case, although it may appear paradoxical, the individual could virtually still hold this position, but the other siblings perform duties on their behalf. The person with a disability is assured that he or she is the one performing the traditional duties, and others are executing them in a fiduciary manner.

2.6. Contemporary challenges of the indigenous/traditional ontologies

Critical theory is at the heart of critiquing social inequalities. This is laudable; however, it must sift and maintain good practices found in indigenous knowledge systems. The onslaught on tradition and culture sacrifices some valuable lessons on the altar of epistemological supremacy and hegemony that came through missionaries and colonialists (Frescura, 2015). While critical theory pretends to be pro-social justice, it is equally suppressing indigenous knowledge systems. Though indigenous knowledge systems contain a heritage of wisdom, methods of how to study them were not developed in the mainstream research training; focus was mainly on the Westernised systems (Mazzocchi, 2006). This contradicts a further observation by Mazzocchi (2006), that “…any form of knowledge makes sense only within its own cultural context” (p. 465). The challenge therefore is exacerbated by using Western research methods to study indigenous ontologies.

Indigenous/traditional ontologies are criticised for being unscientific on the bases of their orally-based methodologies. However, Ogungbure (2013, p. 12), joins voices that “argue that the rejection of African indigenous knowledge as “unscientific” knowledge stems from a false dichotomy”. This false dichotomy is born of the juxtaposition of two research methodologies that emerge from two different investigation systems from two different contexts; Western and indigenous (Mazzocchi, 2006, p. 464). This false dichotomy is therefore discarded on the grounds of the disparity of “…cultural epistemic frameworks” Ogungbure (2013, p. 19). In the appraisal of indigenous epistemologies, Ani (2013, p. 316) reaffirms that “African-oriented epistemology and education system are vital, valuable and worthy of academic pursuit”. It is therefore, the responsibility of African scholars to glean these cultural epistemic frameworks and infuse them into research and knowledge production systems. It is equally important that such frameworks are appraised on their contribution and enhancement of ontologies of disability concerning childhood development. Systems such as paternalism, may have faced scathing criticism on the subjugation of the girl child, especially a child with disabilities as she may not be married to bring the family lobola. One could ask: what role does paternalism play in child development from indigenous epistemologies perspectives?

2.7. Paternalism and child development

Paternalism is a concept that is highly controversial and emotionally laden (Aycan, 2006, p. 445). The word paternalism is derived from the Latin word pater for father, who in his fiduciary duty to care for his child, makes decisions that benefit the child. Generally, “a caregiver is any person giving care to a sick, elderly, or disabled person or a vulnerable child in a home environment” (Ngozwana, 2019, p. 290). The assumption is that the child is not at the time, competent to make his or her own decisions. Framed on John Stuart Mill's (1966) liberty principle components of paternalism, Grill (2018) proposes labelling them: interference component, the will component and the good component. This article only emphasises the good component to align with the duty of care and benevolence of a father towards his child. The good component aligns with the Basotho paternalistic ontology regarding the raising of a child, as guided by “…the principles of best interests of the child and family” (Malempati, 2013, p. 101).

Similarly, Basotho paternalistic ontology considers the gist of paternalism as doing good for the benefit of the child (Grill, 2007). In this article, paternalism is taken to refer to a father who is the “…head of the family, an authority figure responsible for the welfare of family members and other subordinates and dependents” (Fernández-Ballesteros et al., 2019, p. 1). However, feminism emerged strongly as a counter-narrative to patriarchy and, rightfully so, in practices that subjugate women and girls. But, the ongoing relegation of males does not seem to solve the problems some males present to females. For example, lack of respect for females, rape, violence and ultimate femicide. Ubuntu feminism is reviewed in this paper as an approach that dovetails efficiently between paternalism and feminism in the interest of the child.

2.8. Ubuntu feminism

Ubuntu Feminism emerges as a conceptual lens that mitigates the onto-epistemological incertitude between paternalism and feminism in relation to the Basotho ontology of disability expressed through Sehole ho ‘Ma-sona ha se lahloe. Ubuntu Feminism is viewed in this article as a reconciliatory paradigm of Ubuntu/Botho (Nolte-Schamm, 2006) and Euro-Western thinking. The quiddity - “whatness” (a quidditas, from the Latin quid, meaning “what”) (Cross, 2014, p. 1), of Ubuntu feminism is “the being of the human” (Cornell and Van Marle, 2015, p. 3). Ubuntu feminism is a counter-discourse to Euro-Western inclined feminisms. It is also a pan-humanistic philosophy that considers human beings as human regardless of whether they are disabled or not. Ubuntu feminism effectively captures the spirit of the Basotho ontology on disability conveyed through Sehole ho ‘Ma-sona ha se lahloe.

Ubuntu feminism is an emerging paradigm propagated by Cornell and Van Marle (2015). Its approach of embracing humanity is supported within the sphere of education through Ubuntugogy (Bangura, 2005; Van der Walt, 2010). Ubuntu feminism describes ubuntu as an African belief that represents the wholeness of what is to be truly human (Cornell and Van Marle, 2015). The tentative reflections of Ubuntu feminism challenge the prevalent scepticism about ubuntu as conservative and fundamentally patriarchal and label it as misunderstanding the transformative potential of ubuntu (Cornell and Van Marle, 2015, p. 2). Ubuntugogy for the twenty-first century reflects Ubuntu feminism in that it proposes an onto-epistemological approach that builds a bridge between indigenous knowledge systems and Euro-Western systems (Van der Walt, 2010). Similarly, the Basotho ontology of disability makes a clarion call that alternative ways of understanding disability are found within indigenous knowledge systems and need to be infused within existing education systems.

3. Materials and methods

This qualitative study was guided by an interpretivist paradigm (Thanh and Thanh, 2015) in order to reflect on the Basotho ontology of disability, diachronically analysing the proverb: Sehole ho ‘Ma-sona ha se lahloe. A purposive sample of ten parents of youth with intellectual disability discussed the proverb: Sehole ho ‘Ma-sona ha se lahloe, and shared experiences of raising a child with disability. Data were collected through a focus group discussion of a four hour session. Interpretive Phenomenological Analysis (IPA) was engaged to analyse data and make sense of the experiences of the parents (Noon, 2018). Data were transcribed by two Basotho English language doctoral students each of who have more than five years of experience as lecturers in higher education. The researcher then engaged in analysis that followed; reading and note making, noting emergent themes and connecting emergent themes to craft main themes (Noon, 2018). Ethics approved by the University of Pretoria – Faculty of Education Ethics Committee. The study complies with all regulations and the author confirms that informed consent was obtained.

4. Results

The results in this article are presented as themes that resulted from the analysis of the data collected from ten parents of children with intellectual disabilities. Two themes are presented with accompanying categories evidenced through verbatim vignettes of participants’ accounts. Data was anonymised to protect the identity of participants (Allen and Wiles, 2016).

4.1. Experiences of raising a child with intellectual disability

4.1.1. The pain experiences

The mother expressed her pain and desperation as well as worry about what would be the end if her child in the following vignette;

I am mother to a 21 year old girl. She has a mental and bone disabilities. She leads a very difficult life which cannot be easily understood and even as her parent I cannot leave home easily. She gave me difficulties since when she was an infant; even today it is the same. She still displays infant behaviour. What bothers me most is a situation where I may die before her. I wonder what type of life she will have without me. I would thank God if He fetches her before me.

Another mother describes the dependency of her son and the fear she has thus;

I am a mother of a 22 years old son. Since birth till now he is spoon-fed and has everything done for him like an infant. He cannot do anything for himself. I have to observe any dangerous places he may go to because he does not know how to distinguish bad, from good. He eats whatever he finds on the ground. He goes to the kraal and finds the powder-dry animal droppings and he eats that. He also eats the grass if he is lying down on his belly.

A first time mother was not aware her child had s disability, and she relates her frustration in the following words;

When she was born, I was not aware that she had a problem. Perhaps it was because it was my first experience to have a child. I first noticed the problem when she was about 7, 8 or 9 months. I was not even aware because I first heard from other people talking that I had given birth to a disabled child. This really hurt me. I think the manner in which I was approached was not right. Even members of my own family did not make me aware that we had this problem. Usually, he would disappear at night and be gone. I remember one day we found him stuck in the mud at the wetland after having looked for him in the village without success. He was found by one boy stuck in the wetland. That hurt me deeply.

Another frustrated mother described her ordeal in the following words;

Ntate, I experienced a very difficult time in my life when raising my daughter. This has been a very difficult experience because she was different from how I raised all the other children. It was difficult because I was raising someone who wanted things to be done according to how she wants them not how you think it should be. Most of the time, you would encounter some conflicts or disagreements between the two of you. Sometimes it becomes difficult even to understand what she is trying to say or if you think you understand, it appears not to be what she was expressing. I also have a child who is disabled. It is true that to raise such a child is very difficult and frustrating.

A mother of a grown-up who continues to be dependant explained her experiences in the following manner;

My child is 32 years but cannot wash/clean himself properly. Well, when he is happy, he would wash or clean himself properly but if you can instruct him and say, “take a bath!” He would not do it properly (demonstrating what the son would do) because he has been instructed to do so! As a parent, you will become annoyed until you give up; in fact, when he notices that you are annoyed, he exaggerates in not doing it properly in a worse way. He is very stubborn and cheeky. He will refuse to take a bath until you help him and wash him. It is a very difficult situation to raise a disabled child. Okay Ntate, I raised my son. Raising him was a very difficult experience in my life. It is a situation that is beyond my understanding.

4.2. A child's love begins with a parent

Reflections of the Sesotho proverb; Sehole ho ‘Ma-sona ha se lahloe, indicate that most parents think that for a disabled child to be accepted, the parents have to take the first steps in truly loving the child.

4.2.1. Sehole ho ‘Ma-sona ha se lahloe - birth connection

One mother expressed her reflection on the proverb in the following words;

To me this saying means when I have a child different from other normal children, I must work hard and show this child love, the other people should see that I have accepted the child and not abuse him. If I abuse my own child, no one will love him. Actually, it makes me aware, as a mother, that my role is to work hard, and to have a positive attitude towards disabled child.

The only man who participated in the interview shared his thoughts thus;

Well, I think it means all the children are the same and should be treated equally. A disabled child should be loved like any other child. We should love them whole heartedly; and respond to their needs. We are the ones to make their siblings love them and take care of them. I would like to give an example: I have a son who is working but does not at all bother about me, not even buy any clothes for me. Their father has long passed on. The only thing that this son cares about when he gets into the shops is to buy clothes for my disabled child. He would buy him suits, nice shoes and all other clothes. He makes sure that this child has all what he needs. The other one who comes after the disabled one, who used to fight with him is also now working. Some days ago he came back from town very furious. It was because he went to Alliance to check his policies and he want told that he can no longer cover this disabled child.

This participant expressed her reflections, touching on culture and patriarchy profoundly thus;

Yes Ntate, this is a great and rich Sesotho proverb which acts as an advice to us parents, especially those with disabled children. This proverb advises us to be the first ones to show love to our children. This love begins with a parent and transit to family member, relatives and to the nation. All the other people will love your child, the way you do as a parent. This reminds me of the time when I was still a leader, counselling people in different districts in the country. There was a time when I was in Leribe at the place called Mahobong with the chief of the place, Morena Khethisa. I told them that they should show love to other people especially to those that are disabled. I explained that God did not create someone to be disabled because someone had sinned, but because he wanted to show his power, so we need to show compassion and love to this people. If it happens that a disabled child was the first born and an heir in the family, he should not be denied that because of being disabled. This proverb was mainly addressed to parents with disabled children because, in the past, these children were addressed as being ‘lihole’! Nowadays, that word, ‘sehole’, is no longer used but instead we use “sekooa” to refer to disabled people. With this new concept, we are now able to make a distinction among different types of disability. It could be physical disability, mental disability or any other form of disability. Our role here as parents is to show complete love to these children and by so doing we will be doing what is the will of God. It is the will of God that one has that kind of a child and we should be appreciative and accept what God has given us. We should live happily with them and show genuine love to them. This is exactly what is happening in my family in relation to my disabled child. I am now only acting as observer, there are security people, my other children, who are taking care of my disabled child. My family and my relatives love this child very much because they have inherited or copied that love from me as a parent. Thank you, Ntate.

In agreement with others, this mother expressed her feelings about the proverb in the following manner;

Yes Ntate; I would also like to agree with others that this proverb is very rich. When I listen to other people relating their stories, I find that my problems are even lighter than I thought. According to my opinion, this saying talks to the problems that we are encountering with our disabled children. We are made aware to love and take a good care of them. We should love these children and not abandon them or feel as if they are a burden in our lives. When I first had the experience of having a disabled child, I was worried that the other children will not love him and might maltreat him but it was just the opposite. The child who comes after the disabled child is very intelligent and I had thought he would not relate well with the disabled one but he loves him very much. There was a time that I even felt like migrating to another place with him and leave these others at their home if they would not treat my disabled child well. I often blamed myself for his condition but God has made it possible for the other children to love this one a lot and take a good care of him. I do not get that much support from my relatives but it is amazing how my children support and love him. This saying is very powerful, it shows that we have to remain strong and forever love our disabled children.

One mother was clear and expressed the negativity she feels about the proverb in the following strong terms;

Ntate, the word ‘sehole’ is a very negative word that mocks and ridicules a person. Now that we have undergone training, we no longer care about its connotation and how ridicule it is because we have discovered that we are all disabled children of God. Being disabled is not something that you apply for; it comes naturally, at any time, as a will of God. We try to educate people to accept and love disabled people because no one chooses to be disabled; it comes to anyone. But truly, the word ‘sehole’ has a negative connotation towards disability.

4.3. The interviewer interjected for a clarification and asked

If you were to use another word instead of ‘sehole’, and not an English word, which word would you prefer to use?

The suggestion from the mother was;

I would prefer ‘sebopuoa sa Molimo’ (God's creature) or ‘bokooa’. It could be different types of disability; ‘bokooa ba kelello’ (mentally disabled), etc.

5. Discussion

Disability is generally perceived in very negative terms around the world. However, the Basotho ontology of disability conveyed through the proverb: Sehole ho ‘Ma-sona ha se lahloe, provides an alternative and positive regard to disability. The results in this article generally show that most parents went through painful experiences of raising children with disabilities. Specifically, experiences of raising a child with intellectual disabilities are diverse personal journeys that were mostly painful. The results however may not be generalised as qualitative studies are about “thorough descriptions as well as a deep, rich, and contextualized understanding of human experience”, not generalization (Polit and Beck, 2010, p. 1453). The focus group provides discussion “valuable for conceptualization and theorizing” in support of perceptions such as Basotho ontology of disability (Nili et al., 2013, p. 2).

5.1. Painful experiences

The fear of most parents dying and leaving a child with disabilities with no one to care for is a constantly painful experience. This desperation is expressed through a desire for the child to die before a caring parent does. It mirrors the depth of love and care parents of children with disabilities have for their children and directly links to the sentiments contained in the proverb: Sehole ho ‘Ma-sona ha se lahloe. The underlying reason may be that when parents die, children with disabilities face uncertain futures, especially if no advance care plans can be made (White, 2011). One the most critical findings by (Fairthorne et al., 2014, p. 1), indicates that; “Mothers of children with intellectual disability were 40% more likely to die of cancer; 150% more likely to die of cardiovascular disease and nearly 200% more likely to die from misadventure than other mothers”. Often parents are found to suffer from stress, anxiety, and depression (Goldfarb, 2018), evidenced by gloomy mood, pessimism, anhedonia, and tendency for lack of initiative (Al-Farsi et al., 2016, p. 1943–1944). This would leave children with intellectual disabilities more vulnerable and at mercy of others, especially in less resourced communities such as Lesotho.

Another painful experience is not understanding the disability of a child. The deep hurt, and crying day and night without understanding what is going on leads some families to experience grief (Bravo-Benítez et al., 2019). Some children present with complex behavioural problems beyond their disabilities. Parents become overwhelmed and sometimes these behaviours affect members for the community who may not be necessarily empathetic. Sometimes aggression plays out, and parents find themselves unable to comprehend the behaviour or control it. Often, these behaviours emerge from an individual who is no longer physically a child, although they might be operating at an intellectual level lower than their age. Some behaviours are purely manipulative and leave parents helpless with lack of adaptive strategies to help their children (Bravo-Benítez et al., 2019).

Despite these painful experiences, some parents of children with intellectual disabilities display impressive levels of resilience (Mohan and Kulkarni, 2018). This helps a great deal as disgruntlement may not be favourable to dealing with complex issues surrounding a disability in the family. Where possible, an invocation of the Basotho onto-epistemological conceptualisation of childhood as embracing all children as worthy could be used to support families experiencing painful experiences of raising children with disabilities. Ashori, Norouzi and Jalil-Abkenar (2019), encourage positive parenting skills which emphasise participation in positive parenting programmes such as the one offered by IDAL. However, the advantages offered by IDAL include training of the young people with disabilities themselves under the rubric of onto-epistemology.

5.2. A child's love begins with a parent

Basotho parents display great love for their children, regardless of circumstances that may surround such a child. According to Mokala (2020, p. 146), “…Basotho women put their families first at all times”. Children with intellectual disabilities must enjoy the same love as all other children. Therefore, parents have the first responsibility to show love to their children. This category emphasises parental love, not only maternal, but involving both parents. Although Basotho may be perceived as taking a lesser role in raising their children, this is dependent on gender role systems so clearly defined but not necessarily exclusionary. The Sesotho gender ecology clearly divides roles between men and women, leaving women to take care of the home, family wellbeing and care, that includes raising children and taking care of the elderly, the sick and the disabled. Men were generally responsible for roles outside the home, such as ploughing the fields and bringing the harvest home when ready. However, migrant labour into the South African mines took away many able-bodied men and left all the roles to women (Epprecht, 1996).

Contemporary child development discourse has begun to resuscitate the role fathers have to play in the upbringing of their children (Okeke, 2018). This is an attempt in bringing back the traditional role of African fathers who were regarded as providers, protectors of their wives and children (Makofane, 2015). The author argues that through these two roles, fathers love and care for all their children including those with intellectual disabilities. Thus, the proverb; Sehole ho ‘Ma-sona ha se lahloe, in this case is not read in isolation to refer only to the mother, but to the parents. The proverb is taken as advice to parents, especially those with children with disabilities. It exhorts parents to be the first ones to show love to their children, with love that begins with a parent and transit to family member, relatives and to the nation.

Although much appreciation is evident in the data about this proverb, alternative views bring a fresh perspective that serves to improve on this ageless kernel of wisdom. While the word sehole, is the anchor concept in the proverb, current debates encourage adoption of a less negatively viewed concept “sekooa”. This term is disputed by Leshota and Sefotho (2020, p. 5), in that it is connotatively negative, paralysing and promoting dependency among people with disabilities. Leshota and Sefotho prose adoption of the concept “differently abled” (p. 5) as an alternative to disabled. While data in this article proposes ‘sebopuoa sa Molimo’ (God's creature), as an alternative to sehole, this suggestion is acceptable as it tallies with the Basotho onto-epistemological conceptualisation of childhood discussed earlier in this article.

6. Conclusion

This article set out to reflect on a Sesotho proverb: Sehole ho ‘Ma-sona ha se lahloe, guided by the Basotho ontology of disability as a lens. The findings indicate a variety of painful experiences of parents raising children with intellectual disabilities and an acceptance of the proverb as a guide for parents to be the first to love their children with disabilities equally as they would other children. This study found that there is a need to change the word sehole in the Sesotho proverb and replace it with ‘sebopuoa sa Molimo’, which is found to be less negative.

6.1. Limitations

The limitations of this study relate to the focus on the population of parents of children with intellectual disabilities belonging to one association only. This may not be representative of the general population of parents of children with other types of disabilities. Therefore, the results in this article must be read only in relation to the population studied.

6.2. Recommendations

Research: It is recommended that a paremiological study of the word sehole, be conducted to establish whether sebupuoa could replace it as a logical and more generally acceptable alternative.

Theory: It is recommended that the Basotho ontology of disability be further investigated to gauge its onto-epistemological credence against the Euro-Western theoretical dominance.

Practice: Practitioners are encouraged to support use of positive language and find words in their day to day language that need to be replaced so that they can be researched and included in the inclusive education vocabulary based on indigenous knowledge systems.

Declarations

Author contribution statement

Maximus Monaheng Sefotho: Conceived and designed the experiments; Performed the experiments; Analyzed and interpreted the data; Contributed reagents, materials, analysis tools or data; Wrote the paper.

Funding statement

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Data availability statement

Data included in article/supplementary material/referenced in article.

Declaration of interests statement

The authors declare no conflict of interest.

Additional information

No additional information is available for this paper.