“To Live or Not to Live”: The Silent Voices of Adolescents with Disabilities in Ghana

Abstract

About 8% of Ghanaians, including adolescents, have various types of disabilities. Although many legal and constitutional protections for people with disabilities, including adolescents, exist in Ghana, it is widely known that these persons face a variety of psychosocial issues. Several factors have been identified as contributing to the unremitting marginalisation of people with disabilities in general, but the extent to which these can be generalised to adolescents with disabilities is unknown. This study, therefore, sought to document the determinants, manifestations, and consequences of disability-related stigma among differently abled adolescents in three special schools in northern, middle, and southern Ghana. An exploratory descriptive qualitative design was used. Overall, 54 participants were purposively selected for a semi-structured interview and focus group discussions. Braun and Clarke’s procedure for thematic analysis was followed. The findings showed a variety of stigmatising experiences by adolescents with disabilities in their sociocultural context. More broadly, the cause of disability was linked to the ramifications of parental sins against the gods, being a descendant of river gods, and the consequences of bewitchment/curses by family members. Others included the perceived transmissibility of the disability and disability as a visible condition. Stigma manifested in the form of pejorative labelling, ableism, and social exclusion. The consequences of this stigma included negative psychological and emotional effects (i.e., depression, low self-esteem, and a lack of confidence) and suicidal ideation. There is an urgent need for stigma reduction interventions for adolescents with disabilities in Ghana as part of an effort to improve their wellbeing.

1. Introduction

Disability is a global health concern, with about 16% of the world’s population having various forms of disability [1]. This figure is expected to rise considerably as the global population ages, with a resultant increase in the number of people with chronic conditions and ensuing disabilities [2]. There is substantial variation in disability incidence rates across countries, with more women (19%) being affected than men (12%) [3,4].

Ghana has a significant disability burden. The most recent Ghana Statistical Service (GSS) population and housing census revealed Ghana’s population to be about 30.8 million, out of which 8% were identified to have various forms of disability [5]. This indicates a significant percentage increase in the number of persons with a disability compared to the previous population and housing census conducted in 2010, which estimated the disability rate to be 3% [6]. Disability is widely known to be associated with gender, age, unemployment, and low income status [7,8], and there is a high rate of gender-based violence and discrimination toward women with disabilities [9,10,11].

Various established perspectives on determinants of disability exist [12,13]. The social model contends that society disables people by fostering an environment that limits their potential, as opposed to the medical model, which assumes that a person is disabled as a result of physiological disorders that disfigure the body. Additionally, the critical realistic model argues that people are disabled by both society and their bodies, as opposed to the religious model, which claims that being disabled is a punishment for sins committed against an all-powerful being, such as God [12,14]. The medical model has long dominated the policy debate when it comes to disability rights. It is unsurprising that some companies continue to define disability using the medical or functional limitation model instead of addressing the barriers preventing people with disabilities from participating fully and productively at work. Nevertheless, the introduction of the social model has profoundly changed how the broader society views those with disabilities [13].

Broadly, persons with disabilities, especially women and girls, are confronted with stigma [15]. Stigma has been conceptualised in different ways and from diverse perspectives in societies with similar and unique cultural views [16,17]. Goffman, in his seminal work, defined stigma as “an attribute that is deeply discrediting, which reduces someone from a whole and usual person to a tainted, discounted one”. He further elaborated stigma as a basically social phenomenon that is often derived from social relationships and is shaped by sociocultural structures [18].

Several factors contribute to disability-related stigma [19], and this stigma manifests in various forms [20]. For example, persons with a disability, as well as their families, often experience unfairness, isolation, and exclusion from many social activities [20,21]. This stigma experience may lead to depression, loneliness, and low self-esteem [20,22]. To date, no study has explored the extent to which these psychosocial issues exist in school-aged adolescents who are differently abled in the Ghanaian context. We therefore focus on the perceived stigmatising experiences of adolescents with disabilities, with a particular emphasis on the determinants, manifestations, and consequences of stigma as part of a larger study to generate items for a disability stigma scale in Ghana.

2. Materials and Methods

2.1. Study Design

This study employed an explorative descriptive qualitative design. The appropriateness of the design stems from the fact that it lies within the constructivism paradigm, which allows a careful description, interpretation, and analysis of participants’ experience to understand reality. Ethics approval was provided by the University of Ghana Medical Centre Institutional Review Board (Protocol No. UGMC/IRBREVIEW/020/24) and MacEwan University Research Ethics Board (File No: 102243).

2.2. Study Setting

This study was conducted in three regions in Ghana, namely, the Upper West, Ashanti, and Central regions. Each of these regions broadly represents the northern, middle, and southern belts of Ghana. These regions were selected because they all have special schools where adolescents with varied disabilities attend basic education and were readily accessible to the researchers. The data collection sites included the Wa Methodist School for the Blind, Jachie Training Centre for the Disabled, Ashanti School for the Deaf, and the Cape Coast School for the Blind and Deaf. Each of these schools are funded by the Government of Ghana to provide special training for children and young people with various disabilities.

2.3. Participants and Recruitment

Participants were included if they (1) were adolescents with hearing, visual, or physical disabilities aged between 10 and 19 years; (2) attended any of the special schools in the selected study settings; (3) and consented to participate in this study. This age range was based on the operationalisation of adolescent definition by the World Health Organisation [23]. However, those who had intellectual disabilities were excluded, given their inability to grasp an understanding of the phenomenon of interest and to articulate their views. Further, they lacked the capacity to give their informed consent.

The data was collected between July and October 2024 by the third and fourth authors. To recruit the participants, permission was sought from the headmistresses of the various schools. The purpose of this study and the confidentiality arrangement were shared with the prospective participants, and those who consented were interviewed. We obtained assent from participants below the age of 18 years and consent from their caregivers/teachers in the schools. For those with a hearing impairment, sign language interpreters who had signed confidentiality agreements with the research team assisted with the interpretation of the interview guide and the participants’ responses. Mostly, the interviews were conducted under trees in the schools.

2.4. Sampling and Sample Size Determination

Participants were purposively selected from three special schools in Ghana. Overall, 54 participants took part in this study. Four focus group discussions with a group composition of eight and twenty-two semi-structured interviews were conducted. Of the fifty-four, eighteen each were recruited from special schools in the northern, southern, and middle zones in Ghana. None of the participants refused to participate in this study. The approach adopted ensured data saturation (i.e., when no new information emerged), which improves the validity and quality of the findings [24].

2.5. Data Collection Instrument

A semi-structured interview guide was used to facilitate discussion. The guide was developed based on the literature and expert opinions. Two visually impaired and hearing-impaired adolescents were used to pilot the interview guide to ensure that no issue of clarity characterised it. Topics explored during the interviews/focus group discussions (FGD) included the following: (1) participants’ experiences of being treated differently because of their disability, (2) perceived reasons for being treated differently, (3) how those treatments manifested with examples, and (4) the impact of those experiences. The complementarity strength of using both FGDs and interviews was realised in this study given that we obtained a broader description and explanation of the phenomenon.

2.6. Data Processing and Analysis

The data was analysed manually following Braun and Clarke’s (2021) procedure for thematic analysis [25]. First, the audio recordings were transcribed verbatim by the fifth author, followed by coding by the third and fifth authors. As part of coding, we labelled similar concepts identified and conducted various rounds of coding before collating the codes into potential themes. Those that differed were discussed among the two authors until a consensus was reached. The entire process of analysis was documented.

2.7. Rigour

Four criteria were adhered to in order to ensure rigour. These included credibility, dependability, confirmability, and transferability. To ensure credibility, various strategies, including the prolonged engagement of participants and member checking, were adopted [26]. We shared the preliminary findings with two representatives of the participants to validate if they were consistent with their own experiences. Dependability and confirmability were ensured by describing the research process in detail and keeping field notes as well as voice records. Reflexivity was ensured by the researchers’ consciousness of their own biases and personal beliefs about the phenomenon [26].

3. Results

Table 1. Themes and sub-themes.

Theme	Sub-Themes
1. Determinants of disability-related stigma	-Ramifications of parental sins
	-Perceived transmissibility of disability
	-Disability as visible condition
2. Manifestations of disability-related stigma	-Pejorative labelling
	-Ableism
	-Social exclusion
3. Consequences of disability-related stigma	-Negative psychological and emotional effects (depression, low self-esteem, reduced self-efficacy, and loneliness)
	-Suicidal ideation

presents three sub-themes emerged from the data: (1) determinants of disability stigma, (2) manifestations of disability stigma, and (3) consequences of stigma.

3.1. Determinants of Disability-Related Stigma

There were various determinants of disability-related stigma identified. These included (1) the ramifications of parental sins, (2) the perceived transmissibility of the disability, and disability as an unconcealable condition.

3.1.1. Ramifications of Parental Sins

The majority of the participants revealed that they are perceived by society as persons who are paying for the sins committed by their parents. Typically, the explanations of the causation of these events were influenced by the traditional and religious beliefs of the individual. The attribution of disability causation was linked to the evil deeds of either one of the adolescent’s parents. A participant with a physical disability, whose mother also has a physical disability, described how she is constantly ridiculed by her peers because they associate her condition with her mother’s wicked acts, which are seen to be so grievous that her punishment extended beyond her mother to affect her.

“The community holds a deeply grounded belief that people with disabilities are given to those who have sinned against the gods. Some also believe that a fetish priest has been transformed into a god, especially when the disability is severe. In these forms, people look down on them and deem them unfit for any purpose.” (Visually impaired, Upper West Region)

“In my case, because my mum is also disabled, people say that we are paying for the wrongdoings in our family. That the sin is so big that it has to be shared between me and my mother. It’s so sad to walk around knowing that people are talking behind your back.” (Physically impaired, Ashanti Region)

Some participants described instances in which people believed they were incarnations of river gods against whom their parents had sinned, and that they were on a mission to avenge the wrongs of the person responsible. These reincarnated gods in human form would come specifically to punish the parents by using the children as a tool. Given the aforementioned reasons, society viewed them as “wicked” and “unforgiving”, eliciting little sympathy and support.

“Some people see us as gods who have come in human form to punish our parents who have committed a sin. I have heard it more than once from our neighbour that the gods are using me to punish my mother because she is a bad person. For those people, they don’t treat them as humans, and they see them as wicked people.” (Visually Impaired, Upper West Region)

Another driver of stigma is that some people consider adolescents with disabilities as witches and wizards who cannot see during the day but can see well at night. This stigma is said to be heightened when a person with visual impairments can detect the presence of others through their senses, such as footsteps and smell. According to the participants, this notion creates fear in their peers, leading to extreme caution when interacting with them.

“People think we have extra eyes because we are able to use our senses to perceive the presence of human steps and smell. Some believe that we have two eyes in our front and two at the back. The front eye is what is impaired, but the back one is sighted and could see from a distance.” (Visually impaired, Upper West Region)

3.1.2. Perceived Transmissibility of Disability

According to the participants, they are often treated differently because people have the belief that they could be infected with the disability once they come in close proximity to them. This was well expressed by the adolescents with visual impairments. According to the participants, young women in their reproductive age seem to be more afraid of them than the elderly. This is due to the assumption that if you get along well with individuals with disabilities, you could also give birth to similar children.

“It is so sad that people at this age and time still feel that someone with a disability could infect them with the condition. Even some of our family members behave in such ways toward us. It makes you feel so bad.” (Hearing impaired, Central Region)

This was reported to have a significant detrimental impact on their relationships, particularly their marriage, because abled people are often concerned about having disabled children should they marry them.

“As a woman, I am sure that it will not be easy to get a husband when I reach adulthood because of my situation. I know that some of the men who are able think that a person with disability may end up giving birth to a child of her kind. I keep hearing such information from our counterparts who are old.” (Physically impaired, Ashanti Region)

3.1.3. Disability as Visible Condition

A number of the participants were of the view that they are stigmatised because the condition of their disability is not concealable. Thus, people are able to identify them without having to disclose that they are blind or have a physical disability, unlike with other disorders. According to the participants, this is one of the reasons why people treat them differently, particularly those with physical disabilities.

“Often, we are treated badly by others because our condition is very visible.” (Physically impaired, Ashanti Region)

Furthermore, a few participants said that their close networks recognise their disabilities as an outcome of a childhood injection, but that does not change the fact that they treat them differently from their peers. What the participants found unpleasant was the unwelcoming pity that people show them, which they believe accounts for the lack of inclusivity in many social activities and events that they could ordinarily participate in.

“For me, my family is aware that I got the disability of my limbs because a nurse gave me an injection at birth which didn’t go well and affected my movement. But they still seem to treat you as a weak one, which sometimes worries me.” (Physically impaired, Ashanti Region)

3.2. Manifestation of Disability-Related Stigma

There are various ways in which disability-related stigma manifests. Key among them are (1) pejorative labelling, (2) ableism, and (3) social exclusion.

3.2.1. Pejorative Labelling

The participants outlined a number of names that are used to describe persons with disabilities in different contexts where we collected the data. In the northern region, persons who are differently abled are referred to as “gbare,” which literally translates to physically challenged. In the Ashanti region, names such as Nifrani (blind), bafan (cripple), and mmum (deaf and dumb) are used for persons with disabilities. In the central region, tiw (deaf and dumb) is used, and obubuafo refers to “cripples”. These names are considered stigmatising by adolescents with disabilities, particularly because they have formal names, which they could be identified with. A number of them indicated that the name-calling generates anger in them, but they are unable to do anything about it because it is indeed a normative acceptance of their conditions in society.

“Nothing pains me more than to be referred to as a blind boy when I have a name. Do we call abled men with their ability? Why do they refer to us with our disabilities? For many years, I have been struggling with this public ridicule that is directed to me, but I am helpless to respond.” (Visually impaired, Upper West)

Aside from the labelling, some participants indicated that they are often mocked by their peers, and that people frequently point fingers and laugh at them for no apparent reason. Others stated that if they fall for any reason, their classmates will laugh uncontrollably, making them feel dehumanised. One gentleman who is blind reported that people easily approach him when he is walking with his stick to assist him with direction, and anytime he refuses, they become offended and begin to describe him as “too knowing”, a situation that he finds strange, particularly when he knows his surroundings and is also afraid of someone misleading him to a dangerous location.

“I have had a lot of encounters whereby I refused to be assisted by strangers who see me walking alone with my stick for direction. Anytime it happens and I say no, the people become annoyed with me and start talking to me anyhow. What they don’t know is that I know the ins and outs of my immediate surroundings.” (Visually impaired, Upper West Region)

Others said they are often insulted with their disability by their immediate family members and those outside their family network. These attitudes have psychological repercussions for their wellbeing.

3.2.2. Ableism

Ableism, which is considered as the belief that persons who are differently abled are inherently inferior to abled persons, came out strongly as a manifestation of stigma. According to all the participants, it took the determination of their parents and/or caregivers to enrol them into special schools because of societal expectations of what they could do. Additionally, almost all the members of their communities did not see the need for them to be enrolled in school since they were pessimistic about what they could achieve due to their limitations.

One participant recounted how her family members, including her father, disagreed with the decision of her mother to send her to school. Instead, they wanted her to get married to an old man in the community.

“…Had it not been for my mum, I wouldn’t be here today. My family members and father wanted me to stay at home and marry an old man who promised to take care of me. Can you imagine what would have become of me? I feel that they think we cannot amount to anything and therefore see us going to school as a waste of time.” (Hearing impaired, Central Region)

Unfortunately, some of the participants indicated that the belief society attached to them unconsciously made them feel less important and less ambitious. It took the zeal out of them to pursue their career goals.

“I am sure that the negative energy around us by our close contacts takes away our desire to do more and to achieve more for ourselves.”

3.2.3. Social Exclusion

One common manifestation of stigma expressed by the participants was their disconnection from social gatherings. Growing up, their parents used to hide them in their rooms, unlike their counterparts, who were allowed to go out and play with other children. Their reasons included being excessively looked at by others, particularly those who had impaired mobility and had to be carried on the back of their parents. One blind lady said she believed her parents were ashamed to be identified with someone with a disability in public, explaining why she was not allowed to be out. Although these emotions were not expressed for the parents to see, the participants said that it had an emotional toll on them.

“My other siblings who are able are allowed to go out anytime, but growing up, I was left indoors all the time. Now, I feel that my parents were ashamed of my disability and were avoiding the public ridiculing them.” (Visually impaired, Central Region)

“On Sunday, my parents and siblings go to church, but I am left alone with an aunt in the house because I am deaf and dumb. My parents say that I won’t be able to hear anything because there is nobody to sign for me to follow. This is something that I was always concerned about growing up, and it still remains fresh on my mind.” (Hearing impaired, Ashanti Region)

The participants with disabilities who began their education from the mainstream before coming to a special school mentioned that they were treated more differently by their peers than they were in the special school. According to them, they were not allowed to participate in sporting activities in those schools because of their disability, but here, even though most of them are not sighted, they are able to play football together.

“In my former school, I was treated like a sick child. I was not included in any activities in the school, but here I am able to play football with my colleagues.” (Visually impaired, Central Region)

3.3. Consequences of Disability-Related Stigma

Two main consequences of disability-related stigma were identified: (1) psychological/emotional effects and (2) suicidal ideation.

3.3.1. Psychological and Emotional Effect

Almost all the participants indicated that they have been struggling with psychological and emotional torture growing up until now because of their disability. The negative reactions of people within and outside their family network directed at them continually cause them to consider themselves less of a human being. The visible effect is that they have low self-esteem and lack confidence.

“Honestly, I sometimes feel so down, especially when people use my disability to insult me or look down on me because of my disability. Sadly, this is not a condition I invited on myself, but for those out there, they do not see it in that way. I have even cried my eyes out before because it’s not easy to live with this condition in a Ghanaian society.” (Physically challenged, Ashanti Region)

Others also reported that the verbal abuse and the discrimination they experience make them feel depressed. One participant recounted an instance where her parents openly said to her abled siblings who are younger than her that they were their hope to change the family status. She is looking forward to the day when they will start working and contribute to the family finances. This statement, according to the participant who is virtually impaired, strongly affected her emotions, and she lost her appetite.

“I mostly feel so depressed that nothing around me excites me.” (Physically challenged, Ashanti Region)

“The more I think about the fact that I will be treated this way throughout my life here on Earth worries me. It makes me withdraw from others, especially when I go home from school. I stay indoors until school re-opens, then I return to school, where I have a sense of belonging.” (Visually Impaired, Upper West Region)

3.3.2. Suicidal Ideation

A few of the participants recounted even nurturing suicidal thoughts and attempts. According to them, the stigma attached to their disability was unbearable, and they felt that ending their life would be a better option. Others said they tried committing suicide because they did not foresee any change in the struggles of living with a disability in Ghana. The abuse, the name-calling, the gossip, and, above all, the lack of opportunities in the areas of education and employment make it difficult to determine what the future holds for them. A participant recounted an incident where he took in a pesticide known locally as DDT (i.e., dichlorodiphenyltrichloroethane) to poison himself but was rescued by his grandfather, who took him to the hospital for gastric lavage.

“I once drank DDT to end it all. What’s the point of living when you can’t do anything on your own but have to depend on people to control you physically and emotionally? It’s too stressful.” (Visually impaired, Central Region)

Some of the participants said they are always in a state of dilemma as to whether to live or die, and that some of these feelings are driven by voices that they do not have control over. Yet, they are hopeful for the future.

“I have considered to either live or not to live a number of times. When I am down, I hear voices to end it all. Other times, I do feel that there is hope for my future. This feeling keeps me in a state of confusion.” (Physically challenged, Ashanti Region)

4. Discussion

The adolescents with disabilities in the four special schools conveyed a broad range of determinants, manifestations, and consequences of disability-related stigma. The determinants of stigma identified included the ramifications of parental sins against the gods, being a descendant of river gods, and the consequences of bewitchment/curses by family members. Others included the perceived transmissibility of the disability and disability as a visible condition. Stigma manifested in the form of pejorative labelling, ableism, and social exclusion. The consequences of this stigma included negative psychological and emotional effects (i.e., depression, low self-esteem, and a lack of confidence) and suicidal ideation.

First, we found that various normative beliefs about the aetiology of disability contribute to stigma. Similar to other studies [27,28,29], we discovered that the cause of disability was linked to the belief that the affected individuals had violated traditional norms [30], which attracted punishment from the river gods. One possible reason why this belief functions as a driver of stigma is that people generally do not sympathise with those who are believed to be paying the price for violating social norms in many cultures [31]. Instead, these people are blamed for such outcomes and receive less sympathy from the public [32]. The most concerning aspect is that the adolescents who are stigmatised as a result of this causal attribution are not the perceived offenders. This highlights the importance of awareness campaigns about the causes of disability in Ghana. Using traditional/religious leaders as agents in correcting these erroneous beliefs may potentially achieve the expected outcome. Also, a periodic sensitisation on the rights of adolescents with disabilities is needed in the study settings.

Second, the belief that adolescents with disabilities are incarnated river gods generates some level of fear because one does not want to associate closely with such persons and offend them to receive similar punishments [27]. For example, women of reproductive age in Ghana tend to limit their association with persons with disabilities to demonstrate their desire and intent to avoid giving birth to such children in the future [33]. This notion is often reinforced by the perception that disabilities can be transmitted to others [34]. The overall effect is that these children are unable to build social connections that give them that sense of belonging.

Third, we found that adolescents with physical and visual impairments are unable to conceal their disability, leaving them vulnerable to societal judgement, as previously reported [35]. Unlike other stigmatising diseases such as HIV [36], Hepatitis B [31], and tuberculosis [37], which cannot be known until the affected individual discloses them, the same cannot be said about some forms of disabilities due to their non-concealable nature. These were apparently identified as one of the primary reasons for the continued stigma towards people with disabilities in many communities.

In addition to documenting the determinants of disability-related stigma, we also explored the manifestations of this stigma. One manifestation was pejorative labelling, which is consistent with other studies conducted among people with disabilities in Africa [38,39,40]. For example, a critical discourse analysis of various Ghanaian proverbs revealed a common association of the stigmatising labelling of people with disabilities in proverbial sayings, which exacerbates their marginalisation [41].

Furthermore, ableism, which is a type of prejudice, discrimination, and bias against people with disabilities based on the belief that they are less valuable or inferior to abled people, was well reported by the participants. Although we understand that ableism emerges in a variety of ways [42], its occurrence in the context of Ghana is worrying. Derogatory comments from the public directed to adolescents with disabilities, as well as the lower educational status of children with disabilities, make it more difficult to build their self-efficacy and esteem and subsequently lead to a heightened sense of inferiority [43]. This internalised stigma may persist until families recognise the importance of investing in the education of children with disabilities. In most cases, families see it as a waste of resources to educate children with visual, hearing, and physical impairments compared to their siblings who are able. This could partly be explained by the fact that the overall expectation of the families is to invest in someone who could potentially contribute to the family finances in the future. Thus, the one with no activity limitation is often seen as optimal for such an investment.

We also discovered that social exclusion was one of the most common manifestations of stigma among the participants. This was attributed to the fact that parents were reluctant to accompany their differently abled children to public places for fear of gossip. Often, these adolescents are kept indoors, either alone or with their siblings, while their parents work [44]. Sexual abuse is a common risk associated with this arrangement, which is frequently perpetrated by strangers. Other studies [45,46] have found that disability-related stigma can lead to psychological consequences and social exclusion, negatively impacting self-esteem and quality of life.

While this study provides insightful information for policy and programme design, one has to be cautious in generalising the findings to all adolescents with disabilities in Ghana. In addition, the small sample size limits the generalisability of the study findings. The views expressed by the participants in this study who were in school may not be the same as those out of school.

5. Conclusions

This study documents the determinants, manifestations, and consequences of disability-related stigma among differently abled adolescents in Ghana. We found that adolescents with disabilities experience stigmas that affect them negatively. There is an urgent need for stigma reduction interventions for adolescents with disabilities in Ghana as part of an effort to improve their wellbeing. Further, psychological/emotional support for the affected population would be helpful.