Discrimination and the Law in Uganda

The blogs What is Stigma? Stigma and Disability: Stereotypes, Reducing the Stigma of HIV/AIDS in Uganda, What is prejudice? What is Ableism? South African study of family responses to Ableism Part 1 of 2 and South African study of family responses to Ableism Part 2 of 2 all point to discrimination being the outcome of stigma, stereotyping and prejudice. The blog, What is prejudice? further suggests that discrimination is a common link between stigma and prejudice, and that research should focus more on discrimination. This blog first asks: What is discrimination? 

The term discrimination came into the English language in the 17th century. It is derived from the Latin discrimire which means "to separate, to distinguish, to make a distinction". Discrimination is treatment or consideration that makes a distinction for or against a person or an object based on the group they are thought to come from rather than on individual merit. Wikipedia continues:

Moral philosophers have defined discrimination as disadvantageous treatment or consideration. This is a comparative definition. An individual need not be actually harmed in order to be discriminated against. They just need to be treated worse than others for some arbitrary reason.
Based on realistic-conflict theory and social-identity theory, Rubin and Hewstone have highlighted a distinction among three types of discrimination:

1. Realistic competition is driven by self-interest and is aimed at obtaining material resources (e.g., food, territory, customers) for the in-group (e.g., favouring an in-group in order to obtain more resources for its members, including the self).
2. Social competition is driven by the need for self-esteem and is aimed at achieving a positive social status for the in-group relative to comparable out-groups (e.g., favouring an in-group in order to make it better than an out-group).
3. Consensual discrimination is driven by the need for accuracy and reflects stable and legitimate intergroup status hierarchies (e.g., favouring a high-status in-group because it is high status).

The United Nations stance on discrimination includes the statement: "Discriminatory behaviors take many forms, but they all involve some form of exclusion or rejection."International bodies United Nations Human Rights Council work towards helping ending discrimination around the world.

The United Nations has several treaties in place to protect people from discrimination, some of the most important are:

• The Universal Declaration of Human Rights is the foundation document for human rights. 
• The International Convention on the Elimination of All Forms of Racial Discrimination (ICERD). 
• The Convention on the Elimination of All Forms of Discrimination against Women (CEDAW). 
• The Convention on the Rights of Persons with Disabilities (CRPD), see Do you know your rights?

In summary, prejudice, stigma and stereotypes operate in the following way:

• Prejudice is the attitude, for instance, that disabled people are inferior to normal people. 
• Stigma is, for instance, the idea that no one wants wants to be disabled because it is the end of your life. 
• A stereotype is, for instance, the idea that a disabled person with no legs could never do a normal job because they are unable to work.

In contrast discrimination is acting on prejudice, stigma or a stereotype. If you do not act on you prejudice, stigma or stereotype that is not discrimination. How discrimination can be measured will be discussed in the next post. For now we will continue the discussion of discrimination in Ugandan law. 

The CRPD is important, because it protects people from discrimination. The overarching idea of the CRPD is that regardless of disability all people are equal. Rights are protected on the basis of equality.

Boaz Muhumuza

In the 2013 article Blinded by Discrimination: Why people with disabilities are not problems to be solved Boaz Muhumuza, a trained lawyer, discusses the discrimination he has encountered in his life:

Growing up in Uganda, I had to travel over 600 kilometres from my home to find a school for the blind. But I was lucky. Most children in East Africa – indeed across the continent – who are blind, deaf or have an intellectual disability never receive a proper education. People with psychosocial disabilities are often put into treatment centres that are as good as prisons.
But beyond institutional barriers, people with disabilities also struggle against attitudes. People often assume that we cannot make our own decisions, like where and with whom we want to live. We are denied the freedom to make wrong or right choices. People don’t understand that an impairment – like being unable to see – does not affect my other faculties. The fact that I don’t see doesn’t mean that I don’t think. The fact that a person has a mental health problem doesn’t mean that he or she doesn’t have desires, that they are unable to like certain things and hate others.
And my disability – rather than being a limitation – actually became the driving force of my success. Sceptics and outright opposition to my educations drove me to overcome all the obstacles that stand in the way of a person with a visual impairment enjoying a decent education in an under-developed country. Questions like ‘Can he study?’ and ‘Will he ever acquire gainful employment’ merely increased my determination to beat the odds and as a result I was the best student at every level, including Law school where I came top of a class of 303 fully-sighted students.
The human rights abuses I suffered and saw other people with disabilities suffering convinced me to become a human rights lawyer so that I could challenge these violations and promote the rights of people with disabilities. I practiced law with the Legal Action for Persons with Disabilities Uganda (LAPD), a non-governmental organisation that provides free legal aid services to people with disabilities in Uganda and helps to counter the numerous challenges they face in accessing justice – from the physical inaccessibility of court structures to the fact that a person with a mental health challenge cannot testify in court. I also worked with several NGOs advocating for rights of people with disabilities in Uganda.
But then I heard about the new disability programme at the Open Society Initiative for Eastern Africa (OSIEA) and I knew it was the perfect place for me – a place where I could play a central role in shaping government and community programmes, policies and laws towards people with disabilities across the region.
And fortunately, there is now real hope for a change in how people view disability rights in Africa thanks to the United Nations Convention on Rights of Persons with Disabilities. The convention is an international legal instrument that enshrines the rights of persons with disabilities. It was enacted in 2006, and almost every country in East Africa has signed and ratified the convention. By virtue of ratification, these countries are now legally bound to ensure that the rights contained in the convention are put into practice.
But even though so many countries in the region ratified the convention, its details are not well understood – even for those of us who are working on them. We still struggle to figure out what the rights mean in practice. What does it mean for a person with disabilities to have choice? What does it mean for you to say that a person with a mental health challenge has a right to vote?
Understanding the convention in the African context is even more complex. What does it mean if you're fighting for inclusion of people with disabilities in the community when there are no institutions? In Europe or America the answer is easier. There people with disabilities are put into institutions, and inclusion has a clear meaning. But in Africa – where there are fewer institutions – discrimination happens most often in the community in which the person lives. We need experts who can flesh out the policy in a local context.
This will mean shifting the framework for how people view disabilities. Previously, disability was seen in one of two ways – either as a medical problem or a condition that evoked sympathy or pity. People have often asked me, “Have you tried to go to a hospital for your eyes to be treated?” They look at my lack of sight as a problem that should be solved. Or they see me only as someone to be pitied. This approach leads to placing people in institutions. Because the blind need services, people think the solution is to put all blind people into one building.
The human rights framework is meant to shift the problem from the person to the environment. The problem is not that I cannot see, but that my environment is limiting.
Let’s take an example. If you have an elevator in your building and I’m using a wheelchair, I will come with my wheelchair, enter the elevator and arrive at the seventh floor. If you have no elevator you will have disabled me. I’ll come with my wheelchair, but I will be unable to reach my intended floor. With an elevator, we are all able to get to the same place. If the environment is improved then the person who is blind or paralyzed or deaf can perform as well as the others. That’s where the human rights approach comes in.
People often wonder how these environmental changes can be made when resources are scarce, but much of what we are requesting is not big. Reasonable accommodation allows for changes that are neither too expensive nor too difficult for someone to implement. After all, why should someone be able to construct an 8-story building and yet say that they don’t have resources for an elevator?
Obviously, the question of resource scarcity is a challenge. But governments must realise that people with disabilities constitute 10 percent of the world’s population, and many of the changes we need are quite small and don’t cost too much money. Even changing attitudes – for example, having doctors address me and not the person I came with – would go a long way.
What we really need is awareness and education, so that people can understand disability. We need laws and policies to create an environment that is positive to persons with disabilities, and we need to respect the choices, capacity and abilities of people with disabilities.

In theory persons with disabilities (PWDs) should be protected from discrimination by the various laws that Uganda has implemented to protect the rights of PWDs. In reality the Employment Act 2006, the Disability Act 2006 and other laws do not offer the protection they were designed to give. This 2014 report Access to Employment for Personswith Disabilities in Uganda summarizes the state of disability laws in Uganda. The report concludes:

By enacting progressive disability laws, Uganda took a significant leap towards promoting equality of opportunity and encouraging full participation of PWDs in economic and social activities. The Disabilities Act has transformed the face of disability law in Uganda and empowered PWDs with strong legal safeguards. However, few cases ever make it to the courtroom and in most cases the employers avoid such responsibility by not offering PWDs contracts or not hiring them at all. The government should set aside funds to assist marginalised groups to bring cases to court and special committees should be set up to investigate any allegations of discrimination on grounds of disability. Unless legal enforcement is improved and penalties for breach of legal provisions are put in place and enforced, then little is likely to change.
Furthermore, in implementing the provisions of the CRPD, the government missed a critical step, to allocate necessary resources and to put in place institutional frameworks to implement disability policies. Institutional frameworks such as vocational training centers lack adequate funding and in most cases train skills which are largely irrelevant to the current jobs market. Despite that, some PWDs have graduated from these centers and managed to put their skills into practice. However, the vast majority of graduates have so far failed to find meaningful work. Thus, it is recommended that the government assists those who have gained relevant skills by connecting them to employers or offering them financial aid to setup businesses or any trade in which they can apply their skills.
To address the significant gaps in disability policy, Uganda needs immediate and deliberate political action, strong advocacy by the disability community and civil society, above all, support from academics. In regards to the latter, there is a dearth of research literature on disability in Uganda. The academic community needs to wake up and realise that unless there is research literature that highlights the challenges faced by PWDs in areas such as employment, education and health, they would be failing PWDs who are looking at them for support and direction. Advocacy also needs to improve since poor legal enforcement continues to cast a shadow of doubt over most of the progressive government policies. All in all, these shortfalls indicate that the protection of PWDs in employment is in a progressive but still dire state. 

In summary, discrimination happens when a prejudice, stigma or stereotype are acted upon. When a person is discriminated against their rights are infringed. The United Nations CRPD was signed by the government of Uganda to protect the basic rights of PWDs in Uganda. The United Nations has many treaties that form the basis of laws in Uganda that are designed to protect all the people of Uganda. However, the laws relating to discrimination against PWDs are failing in Uganda. Urgent research, political action and advocacy need to be implemented to ensure the PWDs of Uganda are protected.

Outcomes of Group Support for Depression in Uganda

This video interviews people that have taken part in group therapy for their depression based on the work of Doctor Etheldreda Nakimuli (see Group Therapy for Depression in Uganda Part 1 of 2 and Group Therapy for Depression in Uganda Part 1 of 2). It shows the importance of group support psychotherapy (GSP). The poster says:

Many peoples lives have been transformed due to this intervention both in their livelihood and community at large. Members have realized that their lives are still valuable even when they are experiencing challenges within their lives.

Group Therapy for Depression in Uganda Part 2 of 2

Group Therapy for Depression in Uganda Part 1 of 2 introduced the work of Doctor Etheldreda Nakimuli-Mpungu and described its importance for persons with disabilities (PWDs) and the people of Uganda. This blog will describe Doctor Nakimuli's work in more detail. Firrst it will continue describing the results of the qualitative study Developing a culturally sensitive group support intervention for depression among HIV infected and non-infected Ugandan adults: A qualitative study which has already considered Community perceptions of depression and mental health problems, Community strategies used to combat depression in the acholi community and Community perceptions of counseling. It next discusses the appropriateness of group therapy:

Structure and content of the group support intervention

When asked what would be the culturally appropriate structure of a group support intervention in terms of content, group size, composition, frequency and duration of sessions, attributes of group leaders and meeting venues, participants emphasized the need for a community based group intervention that not only focused on treatment of their depression symptoms but also provided them with skills to improve their livelihoods.

“In my experience, I have interacted with many people with depression. Medication alone cannot help. Counseling to heal the stress is the most important. We realized that people who have access to socio-economic support, counseling and medication have faster recovery”. (Mental health workers, Gulu District)

Participants believed that group members should be of the same gender and age-group who share a similar disease condition.

“People have different problems and it would be better if the people who have gone through the same problem should be involved since they know the problem better. People below 18 years should not be mixed with adults because they will not be free to share their problems and they can be scared by problems of their elders. Men and women should not be mixed because women fear to talk their minds when men are there and they feel that its men who are great thinkers with wise decisions.”(Male participants Namukora, Kitgum district) 

Most participants considered a group size of 10–15 people, a group session lasting 2–3 h, and quiet, isolated meeting venues either in the village or village health center to be appropriate...

"Group meetings can take place in an isolated place under a tree or a quiet place in a home in the village selected by group members.” (Female participants, Mucwini, Kitgum district) 

Simple cognitive behavioral techniques such as assigning homework activities, sharing one's personal feelings with others, helping people to identify unhelpful ways of thinking and teaching them helpful ways of thinking, were deemed acceptable and culturally appropriate.

“It's possible to share personal feelings with others. It is happening in all the parishes in Mucwini where HIV/AIDS people are sharing their problems in groups and are playing drama together. Here, women also have credit loan society; sometimes they meet their friends and share personal problems”. (Caregivers, Namukora, Kitgum district) 

“Even at clan level, clan leaders talk to clan members who are going against the community and change their behavior. (Male participant, Namukora Kitgum district)“It is possible to assign some activities to do at home. You can assign a group member to join recreational activities like dancing at home, or with a community group. A group member can be encouraged to work in the fields and not spend all his time crying.”(Female participants, Mucwini Kitgum district) 

Many participants desired that the facilitators of the groups to be respectable members of their community who could understand what the group participants have been through and to be able to empathize with them. Participants emphasized that group facilitators do not always have to be health professionals but individuals with some knowledge of the problem at hand and with good community standing such as community elders, spiritual leaders, teachers, clan leaders and policemen. They also thought that those who have experienced depression and have recovered could be trained to deliver the intervention. Group facilitators should not only build and earn the trust of group members but also ensure that confidentiality of sessions is preserved. Table 3 provides a summary of the key themes and their underlying descriptive codes.

Conclusions are summarized from the abstract:

Results: Our study revealed community misperceptions about etiology, presentation and treatment of depression. Regardless of HIV status, most FGD participants who were not health workers linked depression symptoms to HIV infection. Although there were concerns about confidentiality of issues disclosed, many FGD participants were supportive of a group support intervention, tailored to their gender and age, that would not only focus on treating depression but also provided them with skills to improve their livelihoods. Simple CBT techniques were deemed culturally appropriate and acceptable.
Limitation: Generalizability of study findings may be limited given that the sample was primarily of Luo ethnicity yet there are different ethnic populations in the region.
Conclusion: Local communities can directly inform intervention content. The participants' preferences confirmed the need for a gender-specific intervention for depression that extends beyond medications and empowers them emotionally, socially and economically

The winners of the 2016 Elsevier Foundation Award for Women in Science in the Developing World, Second from the left Etheldreda Nakimuli‐Mpungu, PhD (Uganda)

Finally, if you are having trouble getting to grips with all the qalitative evidence, this 2016 article describes the work of Doctor Nakimuli very clearly. (The article is reproduced in its entirity at the request of the publisher):

Depression and HIV: the search for solutions in sub-Saharan Africa

Etheldreda Nakimuli-Mpungu, Makerere University

Many people with HIV worldwide suffer from some form of mental health problem. Although antiretroviral therapy has drastically reduced HIV-related death and disability, reports of the psychiatric repercussions of HIV are on the increase.

In high-income countries, HIV-related depression – the most common mental health problem in HIV-positive people – was recognised early in the AIDS epidemic as a factor that affects treatment outcomes. Yet it is only recently that the issue has drawn attention in sub-Saharan Africa, where research has found that one in three people living with HIV suffers from depression.

Addressing co-occuring mental health problems is a necessary step in controlling the HIV epidemic. But mental health care is not yet part of the HIV care package in the region.

There are efforts to change this. Our research shows how group psychotherapy interventions that give HIV-positive people emotional and social support, as well as positive coping and income-generating skills, can make a difference.

The link between mental health and HIV

There are biological, psychological and social factors that can cause mental health problems in HIV-positive people.

Depression is the natural grief response to being diagnosed with a terminal illness and to the chronic disability that may arise from it. It can also be linked to the stigma and discrimination associated with the illness. And new psychiatric symptoms and syndromes may occur as the virus affects the brain, or because of opportunistic diseases or treatment side-effects.

Mental health issues can, in turn, influence treatment outcomes. Co-morbid depression may affect motivation to seek HIV treatment or adhere to antiretroviral therapy.

It is also linked to behaviour that may facilitate HIV transmission. People commonly internalise negative stereotypes, expecting discrimination and devaluing themselves. This can interfere with their ability to choose sexual partners and negotiate safer sexual behaviour.

Depression is also associated with reduced coping capacity, poor HIV-related disease prognosis, diminished quality of life, greater social burden, increased health-care costs and higher mortality.

Our research focused on rural primary care settings in Uganda where we developed a group support psychotherapy model to treat depression. Group support psychotherapy treats depression by providing emotional and social support, and teaching positive coping and income-generating skills.

HIV-positive people suffering from depression met in eight weekly, gender-specific sessions. They were provided with information about depression and HIV. They were guided to share personal problems and taught problem-solving and coping skills. These included how to deal with anxiety and unhelpful ways of thinking, and basic livelihood skills.

High level of engagement

Unlike previous studies of group psychotherapy for depression in sub-Saharan Africa, the participants in our group support psychotherapy sessions were eager to engage in the process. More than 80% attended six or more sessions. Given the stigma attached to HIV and mental illness, this was surprising.

There are three possible explanations for the programme’s success.

First, the target community was involved in developing the model. Group support psychotherapy had also been piloted prior to the study and word had spread in the community about its benefits.

Second, trained mental health workers created a safe environment in which the participants could experience the therapeutic processes of group therapy. For example, facilitators reported that all participants had powerful cathartic experiences. Such catharsis has been shown to result in immediate and long-lasting change.

As sessions progressed, group members also began to provide feedback and support each other, during therapy and later, in their livelihood groups. The opportunity to help others, or altruism, has been shown to restore a sense of significance and increase self esteem.

Third, unlike other psychotherapeutic interventions, facilitators taught income-generating skills to mitigate poverty, which has been shown to be a potent risk factor for depression.

Addressing depression in resource-poor settings

Our study provides the first evidence of the success of this kind of group intervention in breaking the negative cycle of poverty and poor mental health in a resource-poor setting.

Six months after the programme ended, 80% of participants said the intervention had reduced their depression and motivated them to make positive changes in their lives.

Our findings also suggest that it is possible to roll out this kind of treatment in poorly resourced rural areas. Non-mental health professionals can be trained to deliver psychotherapeutic interventions in places where it is not possible to employ sufficient numbers of mental health providers.

The shifting of mental health-related tasks from health professionals to para-professionals or non-health professionals has been well-documented in non-HIV populations.

But less is known about the effectiveness of such a shift in HIV-positive populations. We now have evidence that specialists at tertiary institutions can train mid-level mental health workers to effectively deliver group support psychotherapy.

Looking ahead

We plan to expand capacity at primary health-care centres in three districts in northern Uganda. This will allow for depression diagnosis and treatment for those receiving HIV services at these centres.

Strategies include developing tailored training curricula to teach non-specialised health workers to recognise depression and employ group support psychotherapy in its treatment.

They will also be trained to teach lay health workers to deliver group support psychotherapy to HIV-positive people. This will make first-line treatments more widely accessible and sustainable.



Etheldreda Nakimuli-Mpungu, Senior Lecturer and Psychiatric Epidemiologist, Makerere University

This article was originally published on The Conversation. Read the original article.

In summary, the work of Doctor Nakimuli is a very important homegrown, home developed, culturally appropriate treatment for people with HIV/AIDS and depression. This treatment has implications for PWDs who are vulnerable to depression in 4 ways:

1. As already noted, 1 in 5 Ugandans have a MDD (see Mental Health: Depression in Uganda).
2. PWDs are victims of prejudice which is known to cause depression (see Prejudice and Depression).
3. PWDs score significantly less on all socioeconomic indicators means they are susceptible to MDD (see Mental Health: Depression in Uganda).
4. The probable high incidence of HIV/AIDS amongst PWDs (see HIV/AIDS and Disability in Uganda) is a further risk factor for developing depression

Above all in a country with few mental health professionals this work is of major importance to all Ugandans. The significance and impact of this work should not be underestimated. 

Tackling Depression with Group Therapy in Uganda

In this short video Doctor Ethel Nakimuli-Mpungu describes her work with people with HIV/AIDS and depression through group therapy sessions. The poster says:

Many of those living with HIV / aids in rural Uganda are also diagnosed with depression. But whilst their physical conditions get treated, their mental health conditions too often get ignored.
Etheldreda Nakimuli-Mpungu is changing this, training health staff to deliver group psychotherapy in isolated communities to patients living with HIV/aids. And testing out different ways to improve its effectiveness.

Group Therapy for Depression in Uganda Part 1 of 2

The blog Rolling back depression in Uganda presented some of the work of Doctor Etheldreda Nakimuli-Mpungu, Senior Lecturer and Psychiatric Epidemiologist, Makerere University. In the video Doctor Nakimuli described her work with people with depression and also infected or not infected with HIV/AIDS. This blog will introduce the work of Doctor Nakimuli and present the first part of the results of the qualitative study that was the basis of the video. 

The work of Doctor Nakimuli is important for persons with disabilities (PWDs) for several reasons. In the blog Prejudice and Depression it was seen that facing prejudice is a significant factor for developing depression. Add to this the findings of the blog Mental Health: Depression in Uganda which noted that approximately 1 in 5 Ugandans have major depressive disorder (MDD). Additionally PWDs score significantly less on all socioeconomic risk factors for MDD. It follows therefore that MDD or depression is a significant problem for PWDs. 

There are 2 further reasons the work of Doctor Nakimuli is important for PWDs. Firstly people with HIV/AIDS have a significant disability according to the social model of disability (See Albinism in Uganda). The social model of disability describes disability in terms of barriers. For people with HIV/AIDS the disabling barriers are attitudes like stigma and prejudice as well as physical barriers like no ramps or no sign language interpreter. Secondly, PWDs are thought to have a higher incidence of HIV/AIDS than other populations because of a high reported incidence of sexually transmitted diseases (see HIV/AIDS and Disability in Uganda). 

Group therapy is an important development that offers hope to all people with depression. Doctor Nakimuli's work primarily focuses on HIV/AIDS infected people because those with depression have less compliance taking their medications and as a consequence are at greater risks from the complications of HIV/AIDS. 

Dr. Nakimuli teaching Gulu health workers about emotional self-care

The article Treating depression in remote communities provides an overview of how people with HIV/AIDS and depression are given group therapeutic counselling. The article opens:

Can HIV health workers in rural Uganda be trained to treat the mental health of their patients as well as the physical?
The project: Finding effective treatment for depression in rural northern Uganda is anything but easy.
But health workers do visit isolated communities to care for people who live with HIV. So Etheldreda is training those health workers to recognise and respond to depression too – by delivering group psychotherapy.
The process: By working within existing health systems, Etheldreda is bringing depression therapies to areas that would otherwise have been unreachable.
She trains health workers to identify the symptoms of depression and to run group psychotherapy sessions. That training is continually refined, to ensure treatment is as effective as possible.
The potential: As Uganda continues to rebuild following years of conflict, this project is helping people who live with depression to access treatment that otherwise wouldn’t have been available.
But its potential impact goes far further. Accessing effective mental health treatment is a huge problem in many isolated places – and what Etheldreda learns through this project can lay the foundations for similarly innovative outreach work elsewhere.

Doctor Nakimuli has published a qualitative study of her group therapy work the following is taken from that 2014 paper Developing a culturally sensitive group support intervention for depression among HIV infected and non-infected Ugandan adults: A qualitative study. The paper opens setting the scene for the work:

Depression is ranked first among neuropsychiatric diseases that contribute to the burden of disease in low- and middle-income countries (LMIC) (Mathers and Loncar, 2006). War-related violence, chronic diseases such as HIV/AIDS and socio-economic disadvantage including poverty and low education have been found to be major risk factors for depression in these countries (Patel and Thornicroft, 2009). Indeed, high prevalence rates of depression symptoms have been reported in the northern region of Uganda which suffered two decades of brutal civil wars, with estimates ranging from 45% to 70% (Roberts et al., 2008; Vinck et al., 2007).
Depression is associated with low energy level and feelings of inefficacy which results in an inability to care for self, and adhere to medical, behavioral or economic interventions. Indeed, several studies have reported that depression affects an individual's work productivity and subsequently the economic productivity of an entire nation (Wedegaertner et al., 2013). For these reasons, there is urgent need of culturally appropriate interventions for depression especially in low resource settings.
The World Health Organization (World Health Organization, 2010) recommends treating depression with basic psychosocial support combined with antidepressant medication or psychotherapy, such as cognitive behavior therapy (CBT). However, these treatments are limited in low resource settings like northern Uganda (Patel et al., 2007). Further, recent studies (Fournier et al., 2010; Kirsch et al., 2008; Khan et al., 2002) have found that antidepressants are superior to placebo only in cases of moderatesevere depression and may present no advantage over placebo in treatment of mild or sub-threshold depression which is more common in low resource settings like northern Uganda (NakimuliMpungu et al., 2013a, 2013b; Roberts et al., 2008). Psychotherapeutic intervention may provide safer alternatives to medications in such cases. There is substantial evidence to support the use of CBT in the treatment of depression (Cuijpers et al., 2013), and psychological therapies are recommended by WHO as first line treatments for cases of mild or sub-threshold depression (WHO, 2010).
Although most research on development of psychotherapeutic interventions for depression has been concentrated in developed countries (Huntley et al., 2012), studies in Indonesia (Bass et al., 2012), Uganda (Bolton et al., 2007) Congo (Bass et al., 2013), and South Africa and Tanzania (Kaaya et al., 2013) indicate that both adapted western psychotherapeutic interventions and locally developed psychotherapeutic interventions can be efficacious in alleviating symptoms of depression. Provision of these therapies in group format can help to maximize the use of scare resources and thus improve access to the therapy for those who need it and decrease costs associated with providing psychological therapies.
In northern Uganda, there is urgent need to develop culturally sensitive interventions for depression. The development of culturally appropriate psychotherapeutic interventions for depression requires an understanding of the target population perceptions of the etiology, presentation and community care pathways. By integrating population-specific beliefs about depression with the CBT, it is possible to develop a theoretically grounded intervention that is tailored to the needs of this population (Jemmott, 2012). Moreover, because mental health problems and help-seeking behavior are found to be interlinked with gender roles, it is important to take gender into consideration when developing intervention models (Danielsson et al., 2011; Wiklund et al., 2010). Studies indicate that stressors such as sexual or domestic violence are closely linked to women's experiences of distress and impaired mental health (Devries et al., 2013).
This paper reports the results of a qualitative study in which we aimed to obtain information on the cultural understanding of depression symptoms, complications and treatment methods used in post-conflict communities in northern Uganda in order to inform the development of an indigenous group support intervention to treat depression. The paper also describes the features of the developed group support intervention.

Who took part in this qualitative study? (Where n=the number of people in each group).

A total of 110 men and women participated in the focus group discussions. Two gender specific focus groups of HIV positive individuals (n=20), two gender specific focus groups of HIV negative individuals (n=20), two gender specific focus groups of caregivers of individuals with current or past depression (n=20), two focus groups of mental health workers (n=25) and two focus groups of non-governmental organization (NGO) and general health workers (n=25) were convened on separate dates during the study period. The average age of study participants was 42 years (range: 19–68), 52% were males, 70% were married, 76% had primary level education, 90% were peasant farmers, 48% were HIV positive and 66% reported having had current or past depression. All participants reported experiencing war-related traumatic events. The mean number of trauma events was 7 (range: 5–16 events). Other socio-demographic and clinical characteristics of study participants are summarized in Table 1.

Community perceptions of depression and mental health problems

Although some participants were able to identify environmental stressors including war traumatic experiences, excess alcohol consumption and sudden loss of a loved one as precipitants of mental health problems, many still attributed mental health problems such as depression to ancestral spirits and witchcraft. The following excerpts from focus group discussions (FGDs) highlight some of these views:

“Mental illness comes as a result of evil spirits of those who died a long time ago. They can get on somebody and result in mental illness.” (FGD participant, Kitgum district) “You can develop mental illness by being bewitched by someone, for example a co-wife can bewitch you and you develop mental illness.” (FGD participant, Kitgum district) “I know that mental illness is the sickness of the mind. But, in our culture people say that it is caused by witchcraft or failing to do some rituals. For example, when you kill someone as it happened to those who were abducted during the war, there are some rituals which have to be performed otherwise you get mental illness.” (Mental health worker, Gulu district) 

Many participants were aware of complications of depression such as suicide but there was limited knowledge regarding the fact that depression could result in increased incidence of sexual risk behavior which could lead to acquisition of HIV/AIDS. FGD participants were not aware that infectious diseases such as HIV/ AIDS could also precipitate mental health problems. Interestingly, when presented with a case vignette describing a person with symptoms of depression and asked to identify the disease condition that the person has, most patients and their caregivers participants regardless of HIV status said that the person was suffering from HIV/AIDS.

“Ms. AB is having HIV but she is not aware. There is need for her to get counseling. I went through the same problems and I was helped by counseling.” (Male participants, Namukora, Kitgum district)

Many of the HIV positive participants shared personal experiences of rejection by family, friends, and significant others.

“HIV/AIDS causes depression due to stigma. Other people if you are struggling for something with them they ask you, when will you die? How I wisyou die sooner.”(Male participant, Namukora, Kitgum district)

Community strategies used to combat depression in the acholi community

Depression may be handled differently depending on the individual's social network or religious beliefs. Some participants said that depressed persons are usually taken to community elders, close relatives or church leaders for counseling.

“It's difficult to handle, but a depressed person can be counseled by an elder in the community or a close friend to find out the problem. She can also share her problem with her neighbor.”(Female participant, Mucwini, Kitgum district)“You can approach such a person and encourage her/him daily. Can be taken to the church for spiritual healing. The priest reads a verse in the Bible that can encourage her/him. He or she can also be taken to the traditional healer who sometimes gives local herbs.”(Caregivers, Mucwini, Kitgum district) 

If the depression is severe, then they may be referred to hospital for medication and further counseling. Others reported concurrent use of witch doctors, faith healers and hospital care.

“In Acholi, elders always stay close to a person with depression, sharing, and encouraging the person; for example if you lost your loved one. If they fail, they go to traditional healers to find the cause because they believe such a problem could be due to spiritual ancestors who died longtime ago.” (Caregivers, Kitgum district)“Sometimes they are taken to traditional healers prior to being taken to the hospitals. If the traditional healer fails to control their symptoms then they are brought to hospital. Others go to church to seek spiritual healing where they are prayed for.” (Mental health workers, Kitgum district) 

Many participants acknowledged that some depressed individuals, especially men, are reluctant to seek any form of treatment. They may drink excessively or using illicit drugs.

“In our community some individuals don't know that they have depression. When they explain their problems to you, you find that they have symptoms of depression. Many of them end up drinking alcohol every evening to calm their minds”.(Mental health worker, Gulu district) “There is a saying in Acholi culture that you should be a man, so others especially men try to show that they are strong by suppressing the problem.” (Mental health worker, Kitgum district)

Most FGD participants reported that women may try to cope in a positive way.

“Some people go to play netball or football. Some go for cultural entertainment like dancing. It is common with women in our area that they sing a lot when they are depressed and they make up their own songs as they do other family activities.” (Mental health worker, Gulu district)

While the community is responsive to those with depressed feelings, it does not tolerate those who attempt or commit suicide.

“Elders do the counseling in the community (dig into the cause and generate solutions). They also have different ways of handling the problem. In the case that someone attempts suicide; the elders have their ways of punishing the person. In complete suicide the dead body is beaten before laying the body to rest.” (Male participant Namukora, Kitgum district

Community perceptions of counseling

Most participants conceptualized counseling as sharing ideas with one who has a problem with the goal of solving that person's problem:

“It can be unity among 2 people who are having problem. It can heal people just like medicine if they are helped properly by the counselor.” (Female participant, Mucwini Kitgum district) 

"In Acholi, counseling is asking your friend what their problem is and helping them to overcome it. It's a way of reducing pain by sharing problems. Sharing ideas with one who has a problem and comforting him or her. Slowly talking to someone so that they can open up to you.” (Male participant, Namukora, Kitgum district)

 Group counseling was perceived as a better form of counseling than individual counseling.

“You are encouraged and comforted from your distress by group members. You learn new coping skills and you will not be lonely. Group members can mobilize themselves to support a member who is having more problems, like digging for someone who is too depressed, taking them to the hospital.” (Caregivers,Gulu district)

“I feel it is so helpful and it fights discrimination since you will see one another as one. There is unity; you look at yourselves as brothers and sisters. It promotes openness among group members. They get to know one another with the same problem. The group members can brainstorm and start an income generating activity.” (Male participant, Namukora, Kitgum district)

Although many felt that confidentiality would be more assured during individual than group counseling, participants in group therapy were perceived to have a greater opportunity for expanding their social networks and learning coping skills than those participating in individual therapy.

“Counseling in group can encourage group members and reduce death due to suicide. It can also help by sensitizing community about healthy matters. You get encouraged by strength and courage you see from those who join the group and you develop resilience against stigma. It promotes healthy habit like going to hospital to seek health; even going to church.”(Male participants, Namukora Kitgum district)

Through discussions, group members could learn from each other and realize that they were not alone. Further, more people who need counseling would be reached through group counseling than individual counseling.

“It helps to reduce poverty through other group activities. You learn new skills in handling different situations.”(Male participants, Namukora Kitgum district)“You can engage in income generating activities. You get encouraged by strength and courage you see from those who join the group and you develop resilience against stigma. In group you can also engage in other activities like farming. It promotes healthy habit like going to hospital to seek health; even going to church.”(Male participants, Namukora Kitgum district)

The rest of this study will be described in the next blog post with an article about Doctor Nakimuli's work. It is clear that this work is of great importance to all Ugandans and particularly PWDs.

How do you feel about yourself?

This is a short film about self advocacy. People with disabilities (PWDs) speak about who they are, their wants, their needs, their desires. The 2012 paper Stereotypes, Prejudice, and Depression The Integrated Perspective notes that this kind of positive affirmation can be a useful tool for overcoming negative stereotypes. The poster says:

I am. I am not. I want... See me. Hear me. Respect me. Members of Gulu Disabled Persons' Union (GDPU) of Gulu, Uganda share their thoughts on who they are, what they want, and what they deserve as equal citizens. In our own words...

Prejudice and Depression

In the blog What is prejudice? It was noted that: "Prejudice can be a central contributing factor to depression." (Wikipedia). What is the evidence for this statement? And is this significant for people with disabilities (PWDs)?

The theory that prejudice is the cause of depression has been advanced by William Cox. A report Prejudice Can Cause Depression at the Societal, Interpersonal, and Intrapersonal Levels summarizes Cox's theory:

Although depression and prejudice traditionally fall into different areas of study and treatment, a new article suggests that many cases of depression may be caused by prejudice from the self or from another person. In an article published in the September 2012 issue of Perspectives on Psychological Science, a journal of the Association for Psychological Science, William Cox of the University of Wisconsin-Madison and colleagues argue that prejudice and depression are fundamentally connected.
Consider the following sentence: “I really hate _____. I hate the way _____ look. I hate the way _____ talk.”
What words belong in the blanks? It’s possible that the statement expresses prejudice toward a stigmatized group: “I really hate Black people,” “I hate the way gay men look,” or “I hate the way Jews talk.” But this statement actually comes from a depressed patient talking about herself: “I really hate me. I hate the way I look. I hate the way I talk.”
The fact that the statement could have been completed in two equally plausible ways hints at a deep connection between prejudice and depression. Indeed, Cox and colleagues argue that the kinds of stereotypes about others that lead to prejudice and the kinds of schemas about the self that lead to depression are fundamentally similar. Among many features that they have in common, stereotypes of prejudice and schemas of depression are typically well-rehearsed, automatic, and difficult to change.
Cox and colleagues propose an integrated perspective of prejudice and depression, which holds that stereotypes are activated in a “source” who then expresses prejudice toward a “target,” causing the target to become depressed.
This depression caused by prejudice – which the researchers call deprejudice — can occur at many levels. In the classic case, prejudice causes depression at the societal level (e.g., Nazis’ prejudice causing Jews’ depression), but this causal chain can also occur at the interpersonal level (e.g., an abuser’s prejudice causing an abusee’s depression), or even at the intrapersonal level, within a single person (e.g., a man’s prejudice against himself causing his depression).
The researchers state that the focus of their theory is on cases of depression that are driven primarily by the negative thoughts that people have about themselves or that others have about them and does not address “depressions caused by neurochemical, genetic, or inflammatory processes.” Understanding that many people with depression are not “just” depressed – they may have prejudice against themselves that causes their depression – has powerful theoretical implications for treatment.
Cox and colleagues propose that interventions developed and used by depression researchers – such as cognitive behavior therapy and mindfulness training – may be especially useful in combating prejudice. And some interventions developed and used by prejudice researchers may be especially useful in treating depression.
Using a wider lens to see the common processes associated with depression and prejudice will help psychological scientists and clinicians to understand these phenomena better and develop cross-disciplinary interventions that can target both problems.

The ideas summarized above come from a 2012 paper Stereotypes, Prejudice, and Depression The Integrated Perspective, The paper concludes:

Reducing stereotyping at the personal and societal level is more than a moral and ethical imperative—it is a health imperative as well. Those studying depression and prejudice have pursued discrete lines of research, unaware of many parallels between their literatures and unaware that they have been working long and hard to fight a common enemy—stereotyping. The integrated perspective builds a bridge so that researchers can raid one another’s arsenals and thereby pack a greater punch against these personal and societal ills. We hope that by blurring some lines, our model creates a clearer picture.

What does this mean for PWDs in Uganda? In the review of disabilities in Uganda it was seen that prejudice affects all groups of PWDs (see Summary of findings of the Uganda Disability Review Part 1 of 2). Further, in the blog on Mental Health: Depression in Uganda and Summary of findings of the Uganda Disability Review Part 2 of 2 it was noted that:

The major risk factors for developing a major depressive disorder (MDD) are all socioeconomic. They are:

• Low socioeconomic status.
• No formal education.
• No employment.
• Broken family.
• Poverty.

Importantly, PWDs score significantly less across the board on all socioeconomic indicators and are at greater risk than the general population of developing a MDD.

The above theory clearly shows how prejudice can cause depression. When added together these findings suggest that PWDs face an additional unacceptable burden of risk for depression from the prejudice they face.

What can be done about depression? The video Rolling back depression in Uganda is a short video about the work of Doctor Etheldreda Nakimuli-Mpungu who is treating HIV/AIDS people with depression with group therapy. I will write more about this work in the next blog.

Your Disability Doesn't Define You

The work of the Kyaninga Child Development Centre in Kampala. The poster provides the following background information:

Steve Williams came to Uganda in 2003 for a trip to see the wildlife of Uganda and spent 1-3 months in each National Park.
After a year exploring Uganda he decided to stay and set up a lodge. The lodge took 6 years to build, 2 years training the local communities in all the skills needed to build the lodge and a further 4 training and building at the same time.
He opened the Lodge at the end of 2010 and on January the 6th 2011 his first son Sidney was born.
Sidney who is now 5 years old started having severe seizures at the age of 4 months
His wife Asha spent 3 months in Kampala and Nairobi before ending up in the UK at Birmingham Children’s Hospital looking for help and answers. They discovered their son Sidney had Epilepsy and brain damage causing a developmental delay.
Upon their return to western Uganda they quickly realized there was very little help and support for children living disabilities and their families.
They decided to advertise in the UK for a physiotherapist to come out for 6 months to give their son intensive therapy and with the idea of setting up a centre to help other children like Sidney and their families. The centre is now called Kyaninga Child Development Centre and looking after a number of children.

South African study of family responses to Ableism Part 2 of 2

This blog post continues the description  of the 2011 qualitative study “It’s Our Job”: A Qualitative Study of Family Responses to Ableism. It begins at Theme 3: Roles of Parents and Siblings. Parents explain how educating, advocating and informing about their child's disability is empowering for both the parent and the child. Whilst hiding and ignoring, maintaining the ableist status quo, is disempowering.

Theme 1: Support/Lack of Support and Theme 2: Inclusion/Exclusion have been described in South African study of family responses to Ableism Part 1 of 2. 

Imran Buuza being fed by his father Hakeem Buuza using a syringe through the tube inserted in his nose.

To recap, this research outlines the experience of 45 parents of children with autism spectrum disorder (ASD), cerebral palsy (CP), Down's syndrome (DS), and sickle cell disease (SCD) who participated in eight focus groups. The parents experiences were divided into 3 themes. The blog continues from theme 3:

Theme 3: Roles of Parents and Siblings: As parents responded to questions about support and the community, the investigators noted an overarching theme related to how parents react when faced with exclusion and lack of support. This theme was that family members have a job to do in helping the child interact with the community and gain more access and support. For example, in talking about advocacy within the schools, the mother of a twelve-year-old boy said, “It’s our job as a parent.” A mother of a ten-year-old boy with DS noted that when it came to getting typically developing children to play with her son, it was “a lot of work as a parent.” Finally, a mother of an eleven-year-old boy with ASD explained that she told her oldest daughter, “You’ve done an excellent job” with regards to helping his brother learn to interact with others.
We hypothesize that family members did these “jobs” in response to dealing with lack of support and exclusion. When parents were confronted with situations that involved exclusion, discrimination, and a lack of support, they had a choice point in which they could respond in ways that were empowering for themselves and their family members or respond in ways that were disempowering and maintained the status quo of an ableist society. As we examined these roles, we noted that they existed on a continuum. Three of the roles (i.e., advocating, educating, and informing) appeared to empower both the parent and the child with the disability, and two of the roles (ignoring and hiding) were disempowering and supported the status quo of an ableist society as well as the parents own internalized ableism...
Advocating: Advocating involved seeking to improve the environment in which the child and the family lived or improve the services that the child received. All diagnostic groups described advocacy, and parents typically described advocacy as something that happened in the schools. Advocacy is needed when school staff do not fully understand the diagnosis and accommodations required. A mother of a five-year-old girl with SCD described a situation in which she had to meet with the school to describe her child’s needs: 

“Sometimes she’ll be tired and when she’s tired, she’ll go to sleep. She won’t play or participate with other kids sometimes. She will want to go to sleep. So we had a meeting about that.”

Advocating in the schools as well as with health care professionals took place when parents did not believe their child was receiving the best services. Parents described the need to be “pushy” with professionals. A mother of an eight-year-old boy with CP explained that she had to be pushy in order to “find out what’s wrong with [her] baby.’ A foster mother of a ten-year-old boy with ASD described an encounter during school registration in which persistence and advocacy were required:

I was registering them at school. We went over to Carter [Elementary]. They didn’t want D.J. I sat there for 2 hours. I said, “The Board says this is a good school for him. His doctor said this is an extremely good school.” And they said, “Oh no, you’re supposed to go to Greenhill. I said, “Oh, no. Greenhill is right down the street from … They said Carter is a good school.” So, I sat there for 2 hours. I had to go back 3 times and finally she said, “You don’t have enough information to go to this school.” I said, “Okay, fine.” Then, we went back. They said, “We stopped registering after 12:00.” Then I go back and the principal says, “Well, how are you doing?” So I said, “So we meet again.” I said, “This is my struggle and I keep trying to register him in school.” He started laughing. I said, “I have been here three times, trying to register my son in school, you know. I am persistent. I am not going to give up.”

Much of the advocacy was for the child in the family, yet parents also described ways in which the whole family took part in advocating for social change. This advocacy involved trying to improve the lives of all people with disabilities or all people with a given diagnosis. For example, parents in the DS focus groups talked about their involvement in the Down Syndrome Association and participating in the Buddy Walk.
Educating: Educating involved enhancing knowledge about the child’s disorder, his or her behaviors, or his or her health needs related to the disorder. Educating was the most frequently mentioned role and was mentioned across all settings with educating more frequently occurring with professionals and the community than with extended family.
Educating extended family members often meant simply getting them more information about the child’s diagnosis. A father of a six-year-old boy with DS described as a suggestion to other parents how one might involve grandparents more in learning about the diagnosis:

To me, what I would pass on to somebody would be to educate your parents and your in-laws as you were being educated. Don’t leave them out, because they are going to feel left out anyway because they are not right there all the time. And they are going to feel awkward, because they are not really sure what to expect. They don’t want to make a big deal out of it, but it’s a big deal. But educate them as whatever you’re learning.

A mother of a sixteen-year-old boy with SCD explained in a similar way the difficulty that she had getting her family to understand the child’s diagnosis and the steps she took to help them understand:

Trying to help someone to understand it is not a disease, that it’s inherited and that’s it. My husband’s side of the family, they still think that it’s a disease. I even brought to them some information from [the children’s hospital], a booklet so they can read.

Parents discussed the ways they would educate the community through answering questions. In particular, parents described educating peers of their child and their parents. For a mother of a nine-year-old boy with ASD, this meant breaking down ASD into understandable pieces:

At first, I would answer or tell them that he had autism. But not only do other 4 or 5 year old children not know what that means but the parents often did not even understand that nor did it help. So I had to break it down to, you know, “He has a hard time making friends” or “He doesn’t talk very well but he appreciates you trying.”

There was a great deal of discussion about educating health and school professionals about their child’s diagnosis. While discussing this role, many parents pointed out that it shouldn’t be their job to educate professionals. Yet, parents frequently found that professionals were not knowledgeable enough to provide adequate services. Two mothers in first SCD group discussed:

Parent 2: I had an experience with the school. They are very uneducated about sickle cell. They always think that when he says that he hurts or whatever he doesn’t want to be doing something. “Even if his toe hurts,” I said, “If he says that he is in pain, you call me. Whether he’s faking it or not, I don’t take chances.” Teachers at school are really not educated.Parent 5: You just write (504 plans) down but they don’t actually look at them or ask any questions them about it. It’s our job as a parent to get in touch with the school. The parents basically have to educate them.

 A mother of a two-year-old boy with DS described a scene in which she had to step in and teach the therapist about appropriate language to use when discussing a child with an intellectual disability. She explained:

We had just one issue with one therapist. The therapist who comes didn’t have good use of language. I didn’t like it. The way we solved it was I just had to talk to her. The day she used, “Dumb,” I thought oh no. I looked at her and said, “We have to talk.” As soon as she finished, I followed her. I said, “Look”, with tears in my eyes, I said, “You broke my heart today. You’re doing a great job. But, right in front of my daughter, you used that word. I don’t like that.”

Informing: While there was much emphasis placed on educating, we also identified a less involved role of informing about the diagnosis. When parents informed, they simply told others about the child’s diagnosis. Informing was a strategy used less frequently than educating and primarily identified in the ASD and DS groups. Parents carried out informing with the hope that information would lead to acceptance. For some parents, informing people was a part of naming and accepting the child’s disability. For example, two parents in the second ASD group discussed how they use informing to help community members and friends become more comfortable and accept their child:

Mother 3: With the haircutting, it’s the same thing. I took my son and I said, “My son is autistic, so he might squirm, and do this and this.” They take their time and go slow with him. It goes smoothly.Mother 1: I think it’s easier for them, too, if we tell them. The other person, they will be compassionate towards the child. That’s what I tried to tell one of my friends. Her child is three and I’m the only person that she has left that child with. And that was only one time. I mean I had to convince her to do it. She’s not comfortable with it. First, she came out and told me, “I’m not comfortable with that word; I am not comfortable with the word autism.” So, I have to be more careful about that and she said, “Some of the other mothers …” I said, “You know, I’m not ashamed of my two children with autism. Why should I not say autism? I mean that’s what it is.”

Ignoring: Parents used ignoring when they decided to pay no attention to the unhelpful or negative comments made by people in the community. Ignoring was a strategy only mentioned by the parents in the DS and ASD groups and with one exception, only used in interactions with community members. Here is an example of how, in response to the facilitator’s question about situations in public, several parents in the first ASD group described how they dealt with stares and comments by people in the community:

Facilitator: If people say negative things about your child, how do you handle that and how do you handle that with the sibling?Mother 2: It depends if someone is out in public or if it’s a family member, it’s handled two different ways. If it’s somebody in public, if I can I just ignore it.Father 1: Ignore it.Mother 2: And, you can always, on the side, say (to the sibling) they just don’t understand or they’re just not being very nice. You can say something like that. But as far as family, that’s a whole different thing, you know.Mother 5: With family, you have to keep encountering them.

Hiding: Parents used hiding when they decided not to tell people in the community or the extended family about the child’s diagnosis. Parents of children with CP did not choose to hide most likely due to the physical nature of the disability. Hiding was not described in interactions with professionals and infrequently in interactions with extended family. Like ignoring, it is probably not successful to hide from people you have to encounter over and over again.
A few parents chose to hide the diagnosis from the extended family. In response to the facilitator’s question about how do you talk to your relatives about ASD, a mother of three-year-old twin girls, one with autism answered, “Good question since I have not really told my parents. [Laughter from the group] Yes, how do you do that?” Even though this parent reported that she had never told the grandparents, it came up later in the discussion that the grandmother was not comfortable providing care for the child with ASD. So, the attempts to hide were not entirely effective.
When parents described attempts to hide the child’s diagnosis from the community as with extended family, they often explained that the strategy was not successful. A mother of a ten-year-old boy with DS described how she hid the diagnosis from her son’s Boy Scout troop but later realized that hiding was not the best plan because the child’s friends need the opportunity to learn about DS:

When we did the Buddy Walk this year and all the kids came, his Boy Scout troop came, and they were all like--they thought that it was like cancer. “Oh, my gosh, James has got, what does that mean, is he going to die?” All this stuff kind of surfaced. I thought I’ve done a terrible job in letting these kids know what that is but I never really thought it was a big deal. And I thought it was better just to kind of to never make a big deal of it. But it was also good in another way that they knew what that meant. Because the kids are going to develop and they are going to grow older. And someday they need to know what that means.

Parents in the SCD group discussed the need to hide their child’s diagnosis from their employers for fear that they would not be hired or lose a job if information about the child’s diagnosis was known. A mother of a five-year-old girl explained:

Sometimes when you fill out application, you really want to tell that you have a child with sickle cell. But it’s not really good because they won’t hire you because they need you there. Missing work, you know you need to tell them. But in another way, it’s bad to tell them. Because they will be like, well, she’s going to be taking off work and she is going to be another problem. She going to be coming around saying her child has to go to the hospital.

The over all conclusions of the study were:

The  present analysis adds to our understanding of family member experiences of ableism. The parents in this study had a keen awareness of and sensitivity to the ways in which their children experienced disability-related oppression, and they experienced it directly along with their children. The parents had a stake in creating a more inclusive and tolerant community environment as it would benefit both themselves and their children. As a result, parents engaged in activities aimed at making the world a better place for themselves and their children. This study suggests that the disability community should view parents as potential allies in the fight against ableism.

Ableism is seeing the world from one point of view, that of the non disabled person. That attitude becomes the predominant way of viewing the world. Furthermore, through habit a status quo of ignorance is maintained. Ableism then becomes a useful tool for understanding attitudes towards disabled people and of understanding the attitudes of parents and professionals. Ableism can be used to understand both the positive and the negative discrimination that disabled people and their families face. In this study, the ableist standpoint with understand the feelings of parents towards their disabled children in daily life. Understanding the world from the ableist standpoint is a useful tool because it helps forming impartial judgments. 

The only difference is the disbility

Jonathan Tusubira speaks about his experience working with deaf people in Gulu, Northern Uganda. The sound quality is not good but the message is excellent: The only difference is the disability. The poster says:

Jonathan Tusubira is a Media Trainer, Communications Specialist and consultant, and lecturer at the Uganda Film School in Kampala, Uganda. He manages and Coordinates a Disability Rights Fund (DRF) funded project at United Deaf Women's Organization (UDEWO), where he is developing a Communication Strategy for UDEWO with the aim of Gender Main streaming Deaf Women and Girls in Uganda.In this talk, Jonathan highlights the plight of deaf women and points out that the way society responds to disability determines how best this community is embraced and supported through their life's journeys.

South African study of family responses to Ableism Part 1 of 2

In the blog What is Ableism?, the idea that ableism is like racism, feminism or sexism was introduced. Ableism is a very good tool for examining and understanding people's attitudes to disability. The following is a report of  a qualitative study of parents's responses to ableism in South Africa. The research is qualitative which means it looks at reasons, opinions and motivations behind people's decisions. In short, quantitative research is about numbers and statistics, whereas qualitative research is about the underlying feelings.

“It’s Our Job”: A Qualitative Study of Family Responses to Ableism, is a 2011 study of the experience of ableism in South Africa. For easier reading Theme 1: Support/Lack of Support and Theme 2: Inclusion/Exclusion will be described in part 1. Theme 3: Roles of Parents and Siblings will be described in part 2. 

This research outlines the experience of 45 parents of children with autism spectrum disorder (ASD), cerebral palsy (CP), Down's syndrome (DS), and sickle cell disease (SCD) who participated in eight focus groups:

Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child’s disability. Themes evolving from the interviews included: (a) support and lack of support, (b) inclusion and exclusion, and (c) the family members’ roles during their interactions with the community. Parents viewed their roles in the community as (a) advocating, (b) educating, (c) informing, (d) ignoring, and (e) hiding. The relationship between themes is presented, and the relationship between themes and parent empowerment is discussed as well as the ways in which the themes reflect underlying ableism.

Uganda: One family's fight with sickle-cell anemia

The experiences were analysed into three themes. It should be understood that when reading these comments that ableism generates both negative and positive effects, as say knowledge of racism results in positive discrimination to counteract negative discrimination. Certainly these experiences describe themes that are commonly experienced by all parents of disabled children:

Theme 1: Support/Lack of Support: Support and the lack of it was a prominent theme in all parent discussions. The DS group was unique in that they did not identify any instances of lack of support from the community. All other parent groups described both support and the lack of it across settings (extended family, community, professionals).
Extended family: When parents described support from extended family, they usually described either tangible support in the form of providing care for children or intangible support in the form understanding the child’s diagnosis or empathy towards the parents’ experiences. One mother of a two-year-old boy with CP described receiving particularly good support from her mother, although she acknowledged that support from family developed over time:

At first, I think a lot of my family members was --- well, one person was kind of negative about the whole situation and everybody else around me was so positive. They didn’t want her around because she was so negative about the situation. Now, she’s grown to the point where she is even more positive than everybody else. So, I have a really, really good support system…My mom is really supportive. Anytime I need anything because I’m in school at night and she keeps them at night.

Many parents described how grandparents and other extended family could be supportive just by taking an interest in the diagnosis. In some families, an extended family member’s knowledge of medical issues or involvement in the local chapter of a national organization (e.g. Down Syndrome Association) provided support. Taking an interest in how the parents and children were doing also provided support. For example, a mother of four children, two of whom ages seven and fifteen have ASD, explained:

I get a lot of support from my parents personally. My mother is always there for me, she calls me and she is up-to-date on the four kids but she’s always on my two [with autism]. It’s like how do you do it?

Lack of support from family usually consisted of not understanding the diagnosis or not being capable of handing the child’s medical or behavioral needs. There were many examples of this. One parent of a nine-year-old boy with SCD explained:

As far as my side of the family, I wouldn’t trust them with him. Because, when he got sick around my sister, she panicked. I wouldn’t say that she wouldn’t take care of him --- but she panicked and that scares me. Like I told her, if he’s in a crisis and you’re panicking, what is that doing for him? When you have a sick child, you can’t leave them alone with anybody.

Another prominent theme in lack of support involved family members blaming the parents for the child’s disability related health problems or behavior. One parent with an eight-year-old boy in an ASD group explained:

My mom would send me books on how to work with kids who are unruly. She’d send me all of these books about how I should be like getting him in line. She’s still kind of is on that wave length. And so are my husband’s parents. It’s kind of like, “Well, when our kids were young, they would never talk back like that or they would never try to get away with that.”

Community: Support from the community usually came from other parents and church members. Support involved willingness to understand the parent’s and child’s experience with the disorder, expressing concerns for the child when he/she wasn’t in church, or praying for the child when he/she was ill. One mother of a seventeen-year-old boy with SCD explained:

At our church, we have a solid membership and the people who are there, if they don’t see him coming, they’re very concerned. They say, “How is Mark feeling?”

Lack of support from the community was not as prominent of a theme as lack of support from family members or professionals. Perhaps, parents did not expect the same level of support from members of the community. However, parents in the SCD groups did note a particular lack of support coming from their places of employment. One mother of a nine-year-old boy explained that she couldn’t get support from her employer despite her effort to explain the problem:

I let her know, I let them know everything. Actually my aunt had brought him to my job. So they actually saw that he was not feeling well. Matter of fact, I had a social worker from St. Jude saying that my son was in the hospital and I still got fired.

Professionals: Parents described specific professionals that were supportive. One DS focus group spent a great deal of time discussing a special educator who was supportive. Other parents focused on particular practices of professionals that were helpful such as explaining the objectives of treatment and how family members could assist with treatment. One mother of a two-year-old boy in the DS group explained:

Professionals can help in the use of language, too, and involve the siblings. Like with the therapists we have coming to our house, it was so helpful. They would tell me, even if my older son and daughter were there, this is what you can do with John. When they come in from school and they’re there, (the therapists would say) “Let me show you what you can do with your baby brother. This is what you can do.” Involve them, which is good.

Many instances of professionals being unsupportive were described. The three most prominent themes of lack of support were: a) limited information given, b) lack of empathy or validation of the parents’ concerns, and c) limited knowledge of the child’s diagnosis or needs related to the diagnosis. Concerning limited information, one mother of a seventeen-year-old boy with CP explained: 

“We were not told that he had CP for quite a while. It was in his medical records. Nobody told us.”

The same mother described a scene in which a professional displayed a significant lack of empathy for her child:

Nathan is visually impaired. We discovered that when he was 6 months old by shear accident. We went to see a pediatric specialist, one of the best in the city. After his examination, he walked to the doorway and stood there and did not even come into the room and said there’s nothing there. His exact words were, “There will never be anything there. He will never be as good as legally blind. His vision will never be as good as legally blind.” That meant it’s going to be worse than legally blind. He turned around and walked out and said, “I will see you in 6 months.”

Many parents gave examples of professionals who were not familiar with how to care for their child or service systems not set up for their child, but some particularly poignant examples came from the SCD groups. One mother of a two-year-old girl explained:

One day my baby went to [the children’s hospital]. They always said whenever you go to the emergency room tell them your baby is a sickle cell patient. It didn’t do any good. We still sat out there and waited. We still had to wait. One day my baby was throwing up and I told them that she was a sickle cell patient. So, we had to wait right back out (in the waiting room) until they had a room for her. Then, I said, “Why do they tell us to announce the baby has sickle cell when we still have to wait in the waiting room. If this is a crisis, why would you have to wait and then they told us they would see our children (right away)?” It didn’t do any good. We still have to wait. Then, we stay in a room. They’re like, “Are you alright?” I’m trying because she’s sick and then they act like she’s just a regular patient.

Theme 2: Inclusion/Exclusion: Parents in all diagnostic groups noted instances of both inclusion and exclusion of their child with a disability or of their entire family. Discussions about inclusion and exclusion did not include interactions with professionals, so only extended family and community settings will be discussed here. Comments about inclusion and exclusion suggested that the concepts exist on a continuum. Parents noted instances of full inclusion and exclusion. At the same time, they also discussed situations, particularly with the community, in which they were making steps towards inclusion.
Extended Family: With extended family, inclusion usually meant including the child in the larger family activities or seeing the child as “just one of the kids.” A father of a six-year-old boy with DS explained:

I think my parents and my wife’s parents – I can’t see that they do anything different with them than they do with any other. All of Katie’s sisters live in town and so when we’re together we have this huge group of people and James is just one of the gang, just one of the family.

Exclusion frequently came in the form of not wanting the child with the disability around the family or discouraging the idea of inclusion of the child in the community. A mother of an eight-year-old boy with CP explained:

When I first told my family that Tyrone had cerebral palsy, my aunt said, “Why don’t you just leave him at home?” When she said that, it made me so mad I almost hit her. How you just going to leave? How you just going to put him back, if it was you what would you say? You would want to see the sun, you would want to feel the breeze. You want to go outside. You would want to see the birds, or whatever. Don’t you think he wants to do that, too?

Community: When parents described inclusion in the schools, church, or neighborhood, they usually described the child with a disability being accepted as just one of the group, just one of the kids in the school or neighborhood. A father of a four-year-old girl with CP explained, “Our church loves her. Good grief, everybody loves her at church.”
Inclusion was also described as something that the family as a whole had to work towards. For example, the mother of a sixteen-year-old boy in the SCD group explained how she worked towards inclusion by giving people information:

Once we got the information to them, then they could understand (sickle cell) wasn’t something that could be helped and it wasn’t something that they could catch from him. Knowledge of spreading it, trying to help someone to understand that it was not a disease, that it’s inherited and that’s it.

Inclusion was also described as something that improves over time because laws have changed, buildings are more accessible, and because people came to know and accept their child with a disability. A mother of a seventeen-year-old boy with CP explained how inclusion has improved:

Yeah, things were tough then. There were very few places you could take him to eat. For example, it was very hard to get him inside a lot of restaurants. There was no such thing as public transportation. So, all things have gotten easier over time.

Despite the improvements parents saw in inclusion, many examples of exclusion were still given. A mother of a twelve-year-old boy with ASD explained, “We’ve never found a church that was very welcoming.” Parents in the DS and SCD groups described instances in which other children teased the child. A particularly poignant example of exclusion was given by a mother of an eleven-year-old girl with CP describing a scene in which she was tube feeding her daughter in the food court of a local mall:

If I’m tube feeding her, people are looking and I’m like, she has to eat. We’re sitting in the food court and I had a lady to ask me “Could you please go feed her somewhere else?” I said, “No. Could you go eat in the bathroom? Do you want to go eat your lunch in the bathroom?” She’s like, “No, ma’am.” Then I’m not going to take her to the bathroom.

Theme 3: Roles of Parents and Siblings, will be described in the next part of this report...