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3:

In the East African nation of Uganda, disabled people experience social vulnerability through poverty, underfunded services, and exclusion especially those with intellectual disabilities who are often left out of rights-based frameworks that demand self-representation (Zoanni, 2022). In contrast, Mugabi Byenkya embraces radical vulnerability by publicly sharing his pain and disability through poetry and storytelling, using truth-telling as empowerment (Byenkya, 2021). While Uganda’s systems often silence or overlook disabled people, Byenkya’s writing transforms personal struggle into a powerful act of visibility.

4: Uganda has made progress with disability rights ratifying the UNCRPD, reserving Parliament seats for disabled people, and promoting disability in public media (Zoanni, 2022). Yet, implementation is weak, especially in rural areas, and many disabled Ugandans remain poor and excluded, particularly those with cognitive impairments. Zoanni suggests moving beyond paper rights by funding programs, supporting everyday care networks, and embracing interdependence through concepts like ubuntu.

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1.) How does Mugabi Byenkya represent the experience of chronic pain in his poetry and novel, Dear Philomena? Provide specifics. Reflect on the importance of his artistic work. How might his writing impact readers and non-disabled readers? how might it impact leaders from the global north?

Regarding the book, it offers insight into the struggles one may face or the isolation that comes with chronic pain. The author states that chronic pain can be invisible to many and very misunderstood by people without chronic pain. I think that the reading will impact non-disabled readers more, as it will give them an insight into what it is like for a person with chronic pain. This would allow the non-disabled person to gain a glimpse and be able to sympathize with the individual in the book, giving them an opportunity to understand.

4.) What are "disability rights and wrongs" in Uganda, as discussed by Tyler Zoanni? In other words, what has been successful about disability rights in Uganda? What are current challenges or limitations? How does Zoanni recommend moving forward?

What has been successful for Uganda has been the Disability Act and Rights. The country has since passed stronger laws protecting these. Limitations of this would be people's understanding of disabled people, as there are still news reports it talk about how it ends with a call for assistance. Another limitation would be gathering support for the cause and finding people to get rid of the stigma around the disabled people.

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2.

Both the social and medical models are seen through Mugabi’s experiences. The medical model keeps the mindset that people’s differences in ability are differences that need to be ”fixed” or treated. The social model keeps the mindset that it is society’s job to provide accommodations for people, not that their differences are the issue. Mugabi speaks on feeling as though he is seen as someone that needs to be fixed instead of heard, which reflects the medical model. When he speaks about society’s role when disabling him via isolation or perceiving him (such as assigning him low expectations), it reflects the social model. Mugabi wrote about feeling that people in society “either infantilize me or expect me to be a superhero”. Through his writing, he is able to challenge both models and how they are played out in society.

4.

According to Zoanni, “the material circumstances of the vast majority of disabled Ugandans have not significantly changed”, despite Uganda having progressed disability laws. This is due to many disabled people within the population facing poverty and programs for them remaining unfunded, such as programs that support disabled people with certain skills. Zoanni speaks on looking past just laws and legal rights and to set a focal point on the community and its support systems.

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1. I would like to recognize the chronic pain that Mugabi shares with us within his poetry. In the poem, there was reference on how he used to be able to a particular thing and then compared to his current state in the poem. In the poem an example of this is "I used to be able to kneel on the sidelines for the length of several matches now I faint if I kneel for longer than a couple minutes" There is mention to the physical pain that was caused from the stroke. "Right hand spastic, an effect of the paralysis from your first stroke right knee throbbing in pain from a patella fracture that never healed properly left calf painfully spasming non-stop beyond your control head propped up on a rolled-up towel to ease the muscle pain from neck spasms" personally to me this sounded like a routine thing. The impact of his poetry I think is very inspiring and speaks to readers than most poetry, as its about personal experience and more so focused on the stroke and what is "new life" looked like after his right side wasn't as function as the left. Forces the readers to think deeper, as he mentions things people do every day, such as writing, and how that changed for him.

2. Within the social and medical models of disability they can be recognize within his work, it is stated within the text (Disability Rights and Wrongs in Uganda) "and relative numbers of disabled people in Uganda are not on the low end of the estimates—regardless of how exactly one defines disability—because of Uganda’s history of violence as well as people’s limited access to medical care in a context of widespread poverty. But it is equally safe to say that these factors do not by themselves account for the prominent place of disability in contemporary Uganda" I feel this help readers indefinity that there is a bigger reason for there not being the recognition of disability and the acceptance, along within the medical system. Within (A Disabled Body Living in an Able-Bodied World: A Dialogue with Mugabi Byenkya) he suggests how he was a little unsure of these own feelings towards modern medicines ability to be helpful, due to the poor experiences he encountered, as his symptoms at his age were not excepted as the outcome and problem; nobody expects a 9-year-old to have a stroke. He also mentions through the medical process he did not feel human, being around medical professionals made him feel like he was part of a "big medical mystery". It was interesting to me also, how he made mention that he was dismissed as been dehydrated the first time around, as not much was done.

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In Uganda, disabled people often face social challenges because of unfair policies and cultural and religious beliefs, as Zoanni explains. He shows how development programs and Christian healing churches treat disability as something to fix, not as a normal part of life. But he also talks about how a lot of poor people are disabled. “despite the promise and notable gains of disability law, policy, and activism, the material circumstances of the vast majority of disabled Ugandans have not significantly changed in the past few decades.”(Zoanni 4). As a result, disabled people are seen as weak or in need, not as full members of society. This makes them more dependent on others and limits their chances to be included and respected. Zoanni says this kind of treatment makes people with disabilities more vulnerable by ignoring their value and rights. On the other hand, Mugabi Byenkya sees vulnerability in a different way. “When my strokes led to newfound disabilities that could not be overcome by sheer force of will, I was left at a crossroad, unsure of what to do if perseverance didn’t work anymore. So, instead, after much reading through disability theory, I vowed to be more gentle on myself and accept that not everything could be overcome.”(Byenkya). Instead of hiding his disability, he uses it to express strength and truth. He shares his life through writing, poetry, and performances to show that being open about his struggles helps him connect with others. For Byenkya, vulnerability is a choice—it’s a way to resist society’s negative views and take back control of his story. Zoanni and Byenkya offer two different views: one shows how systems create vulnerability through exclusion, and the other shows how vulnerability can be a powerful way to speak up, build community, and be seen in a world that often overlooks disabled people.

In Disability Rights and Wrongs in Uganda, Zoanni says Uganda has made some good steps forward such as “the constitutional rights of disabled people to respect and dignity”(Zoanni 1). There are also groups and activists working hard to make life better for disabled Ugandans. But Zoanni also shows that there are still big problems. Just because the laws exist doesn’t mean they’re followed. “In many ways, then, disability policies and in- terventions are often far removed from conditions on the ground, particularly in rural areas, where the majority of people in Uganda live.”(Zoanni 4). Many programs don’t get the money or support they need, and the government doesn’t always collect good information to understand what disabled people really need. Also, some people still see disability as something sad or wrong that needs to be “fixed,” especially in churches that try to “heal” people through prayer. Zoanni believes the way forward is to stop copying solutions from other countries and instead focus on what works in Uganda. He says we need to understand how disability is experienced there and build support based on local beliefs and everyday life. This means combining strong laws with communities to support more funding, and long-term education efforts, and helping disabled people live with dignity.

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3. How do disabled people in Uganda experience social vulnerability from policies and practices, as described by Tyler Zoanni? How does this differ from individuals embracing radical vulnerability, as discussed by Mugabi Byenkya?

In Uganda, disabled people experience social vulnerability because of the way policies and systems are set up to exclude them. According to the reading, disability is often framed through “a lens of charity and pity” instead of being grounded in justice and rights (Zoanni, 2022, p. 190). This framing contributes to the perception of disabled people as dependent or in need of help, rather than as equals. Accoridng to the reading, Zoanni argues that “Much of Uganda’s disability legislation exists largely on paper,” with many programs remaining “underfunded, unfunded, or unimplemented,” leaving most disabled people without access to education, employment, healthcare, or inclusive public spaces (Zoanni, 2022, p. 193). He describes this as a “social vulnerability created by society, not just by someone’s physical condition” (Zoanni, 2022, p. 193).

In contrast, Mugabi Byenkya focuses on something that he calls “radical vulnerability.” Rather than trying to hide his disabilities or conform to expectations of overcoming pain, he shares his experience openly through storytelling. According to the reading, “There is a narrative that all struggles can be overcome… I want to and let people know that it’s okay not to be okay. Some things cannot be overcome, they can simply be managed” (Byenkya, 2019). For Byenkya, vulnerability is not a weakness but a form of connection. “Through sharing myself unapologetically, I have found that others feel more inclined to likewise share parts of themselves that don’t often come to light” (Byenkya, 2019). His approach focuses on deeper connections and a person’s emotional connection is formed.

Zoanni and Byenkya view vulnerability much differently. Zoanni (2022) critiques how institutional and societal structures impose vulnerability on disabled people by excluding them. Byenkya on the other hand, claims that vulnerability is a conscious and empowering act. While Zoanni looks at how people are excluded by society, Byenkya talks about accepting your reality and finding empowerment in telling your story. Together, they show the structural challenges and the personal strength involved in living with disability in Uganda. Together, they focus on both the societal challenges and the personal determination that shape the experience of living with a disability in Uganda.

4. What are "disability rights and wrongs" in Uganda, as discussed by Tyler Zoanni? In other words, what has been successful about disability rights in Uganda? What are the current challenges or limitations? How does Zoanni recommend moving forward?

There are “disability rights and wrongs” in Uganda, as discussed by Tyler Zoanni (2022), which explores both the progress and the ongoing struggles surrounding disability rights in Uganda. The country has earned recognition for its strong legal and political framework that protects disabled people’s rights. According to the reading, “Uganda has ratified the United Nations Convention on the Rights of Persons with Disabilities, and it has enacted anti-discrimination laws guaranteeing disabled people’s access to education, community life, employment, physical space, and more” (Zoanni, 2022, p. 190). The Ugandan Parliament also “has five seats reserved for disabled people,” and “every level of government has mandated representation of disabled people” (Zoanni, 2022, p. 190). These accomplishments are supported by decades of activism and are reflected in a visible presence of disability issues in national media and public life. According to the reading, “Disability plays a vibrant role in social and public life in Uganda” (Zoanni, 2022, p. 190). This is a huge achievement in a country facing poverty and post-conflict recovery, which he describes as “remarkable in any case, but especially so in light of the considerable challenges the country has faced” (Zoanni, 2022, p. 190).

However, Zoanni (2022) points out that these legal gains have not translated into real improvements for most disabled individuals in Uganda. According to the reading, “Much of Uganda’s disability legislation exists largely on paper, while many disability programs and policies go underfunded, unfunded, or unimplemented” (Zoanni, 2022, p. 193). Citing a 2014 UNICEF report, according to the reading, “Only 9 percent of disabled children in Uganda were in any form of school, whether pre-primary, primary, or secondary” (Zoanni, 2022, p. 193). Government and NGO-led programs often focus on teaching low-wage skills like tailoring or shoemaking, but “they tend to train disabled people for low-paying jobs in markets already oversaturated with similar goods and services” (Zoanni, 2022, p. 192). According to the reading, Zoanni explains, “Reflect the agency and plans of bureaucracies, rather than the wishes, choices, and goals of disabled people themselves” (Zoanni, 2022, p. 192). As a result, he describes a growing gap between a “disability elite” and “the vast majority of poor disabled Ugandans” (Zoanni, 2022, p. 193).

To address these issues, Zoanni recommends moving beyond a purely legalistic, rights-based approach. He critiques mainstream disability politics for focusing heavily on “individual rights, autonomy, and self-determination,” which he says “are grounded in laws and policies as the basis for social change” (Zoanni, 2022, p. 190). This approach, he emphasizes, “Has the dangerous capacity to reinforce rather than challenge dominant expectations about what it means to represent oneself, and to be a self in the first place” (Zoanni, 2022, p. 194). Instead, he focuses on the potential of “disability justice,” which “calls for intersectional coalition-building across diverse social identities and positions, mutual aid, and experiments in interdependent collective living” (Zoanni, 2022, p. 194). Zoanni (2022) explains that ubuntu “begins from the fundamental interdependence of all human existence” (p. 194). He also points to Christian-run care homes and schools as “spaces that, despite their limitations, provide important support for those left out of formal activism and policy” (Zoanni, 2022, p. 195).

Overall, Zoanni argues that Uganda’s story is not just one of success or failure. Instead, it “underlines the ways that such a journey can and should continue” and reminds us that “rights and liberal politics alone are not enough” (Zoanni, 2022, p. 195). Real change requires addressing the everyday social and economic challenges disabled people face and creating more inclusive systems that reach those most often left behind (Zoanni, 2022, pp. 194–195).

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4. What are "disability rights and wrongs" in Uganda, as discussed by Tyler Zoanni? In other words, what has been successful about disability rights in Uganda? What are current challenges or limitations? How does Zoanni recommend moving forward?

Success: Starting with the social aspects and lives of people with disabilities, Uganda has done a good job making disabled people visible. Globally, other countries do not have good representation of disabled people in the media. However, conversations and representations of disability are not lacking in Uganda: with disabled talk shows, programs, and series. This is especially a big deal because rights for those with disabilities start with general recognition, representation, and social consideration. Politically, the country of Uganda has created some of the most progressive laws and policies for disabled people. This starts with their constitution explicitly including and recognizing the rights of disabled people, moving to the ratification of the United Nations Convention on the Rights of Persons with Disabilities. This convention allows the guarantee of disabled people’s rights to education and employment, among other rights. Education-wise, Uganda formed a national special educator training program alongside a mix of “integrated, mixed, and segregated schools for disabled students”. There are also a variety of government and nongovernmental disabled-run groups, such as the National Union of Disabled Persons of Uganda, that focus on “disability services, rehabilitation, economic and social development, and the arts and cultural life”.

Challenges/limitations: Even with progressive laws, inclusion, and programs for disabled people, there are still barriers and challenges that disabled people in Uganda face. For example, there are a number of stories about disabled people in the newspaper. This is good for general recognition and representation. However, the newspaper themself have a mix of stories that paint the picture of disabled people’s lives and being into both good and bad categories- with some stories of “pity and personal misfortune that ends in calls for assistance”. With this, Zoanni points out that “A great deal of policy, activist, and academic work points to stigma, ‘cultural’ beliefs, ignorance, and attitudes as the causes of unfavorable living conditions, social marginalization, and oppression faced by disabled people in Uganda”. These stories (that resemble inspiration porn seen in the West) play into those aspects of disabled people’s discrimination in Uganda. To add to that, “many Ugandans with intellectual and developmental impairments fall outside of mainstream disability activism and politics in Uganda… disabled people are treated as children regardless of their biological age”. This shows that even with progressive laws, disabled people in Uganda also face social stigma that affects their day-to-day life. Outside of these social acts, there are also a myriad of political, social, and economic factors that play a role. For starters, an estimated 80% of disabled people in Uganda live below the poverty line. These individual economic factors combined with the fact that “much of Uganda’s disability legislation exists largely on paper, while many disability programs and policies go underfunded, unfunded, or unimplemented” show first-hand how economics plays a large role in disabled people’s oppression in Uganda. Additionally, there exists “a kind of disability elite, made up of highly educated politicians, activists, lawyers, academics, and other professionals holding well-paying jobs in government, NGOs. and transnational organizations”. This creates a sort of dichotomy between the groups of disabled people in the country, with those without these positions offered “skilling initiatives” that tend to train disabled people in jobs that are low-paying and in a saturated market. Next, even with the progressive and universal education programs for disabled children, it was found that only 9% of disabled children attended any type of schooling: from pre-primary to secondary. Schools in Uganda have a myriad of problems, including “lack of accessible and supportive learning environments, the high cost of fees for private schools… and the burdensome costs of supplies, uniforms, and transportation even for government schools that do not require tuition”.

Zoanni recommendations:

Throughout the work, Zoanni calls out liberal disability politics and calls for something more. For example, he defines the idea of “disability justice” in North America and references activist Oche Onazi, who “draws links between disability justice and the importance within African philosophy of the notion of ubuntu, which can be translated as ‘humanity’ or ‘personhood’, but in a way that begins from the fundamental interdependence of all human existence”. He goes on to bring an example that happens in Uganda, where Christian schools and homes exist for people with cognitive and developmental impairments. As previously mentioned, only 9% of disabled children attended any type of schooling: from pre-primary to secondary. Overall, those with cognitive and developmental disabilities aren’t included in what progressive politics Uganda has- and they also don’t get as much activism from the major disabled community. There is one main space for them, which is the Christian schools and homes. These places center “presence, interdependence, and life together” rather than individualism that is oftentimes seen in the West. This type of community living is what Zoanni recommends moving forward.

6. How are intellectually disabled children particularly at risk in Uganda, as described by Tyler Zoanni and Christopher Hopkins: Tyler Zoanni and Christopher Hopkins describe how intellectually disabled children are at risk through the aspect of being excluded/left out. Specifically, Hopkins shares the story of Perez Mwase being diagnosed with Malaria when he had autism and his mom wishing he could connect with and be included in society. Zoanni provides an example of institutional settings far away from “mainstream settings”. The overall message they wish to send is that kids/people with intellectual/cognitive disabilities are most at risk when they are separated from society and community.

What cultural beliefs lead to their mistreatment?

What might be done to address the issues they face?

Zoanni provides the example of the Christian homes that center community not only with disabled people, but also with nondisabled people/general society: “Efforts like this Catholic home embody a kind of disability politics that is radical in its own right, based not in rights or self-representation, but in presence, interdependence, and life together. This is rare in a place like Uganda; it also runs against the grain of the wider project of ‘independent’ living within liberal disability politics in Euro-American context”. Promoting this kind of community and connection among everyone provides children and other individuals with these disabilities to have support and love: something everyone deserves.

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3. Zoanni explains that even though the country has strong disability laws, real world practices usually fail them. He examines that Uganda has some of the best progressive laws only on paper, including anti discrimination rules, but enforcement is usually very weak if at all. As a result of this many of the public spaces and schools are inaccessible. In some of the worst cases, disabled and ill children are subject to "mercy killings" by witch doctors, and this shows the huge gap between what is in law and what is the actual lived experience. By contrast, Byenkya focuses on what he would call radical vulnerability. This is a personal way of living with a disability. In A Disabled Body Living in an Able Bodied World, he talks explicitly about chronic pain and emotional hardship. Byenkya uses his writing in an artful way to express what it really feels like to live outside of society’s expectations.

4. Zoanni explains that Uganda has achieved more successes in disability rights as of lately. The country has since passed really strong laws and created reserved parliamentary seats, while managing media representation. I believe this shows a real shift toward recognition of disabled people’s rights. There are still major problems. Despite the laws being put into place recently. Enforcement is still very limited because public buildings are not as accessible, and schools usually leave disabled students behind if they can not keep up, money is scarce and only goes to what the government thinks it should, and still the stigma is overpoweringly strong. In some of the most tragic cases, some cultures can lead to horrific outcomes like “mercy killings” . Zoanni suggests that Uganda improve the actual implementation of the laws through stronger enforcement, more money for services and infrastructure that are accessible, real awareness campaigns that could raise more money, and by supporting disabled led groups to reshape policies that reflect real lived experiences.

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1. How does Mugabi Byenkya represent the experiences of chronic pain in his poetry and novel, Dear Philomena? Provide specific examples. Reflect on the importance of his artistic work. How might his writing impact disabled readers and non-disabled readers differently? How might it impact readers from the Global North and the Global South differently?

When it comes to Mugabi Byenkya’s Dear Philomena, it offers a real insight into the narrative that focuses on the struggle and isolation that comes with chronic pain. Throughout the text he explains the psychological, emotional, and spiritual drain of surviving not just one stroke but two at such a young age of 22. He explains that being considered a “fascinating care” by the doctors who could not give him a straightforward answer is not long humiliating as they look at you and that even with how advanced medical knowledge and treatments are they still have limits (Meharalit, 2018). He said in the interview that byenkya rejected the idea that the pain he felt had a purpose beyond him saying that “I don't see any deeper meaning or purpose behind my chronic pain... nobody deserves to suffer” (ThemeGrill, 2019). This statement is quite honest to say the least as he challenges inspirational narratives and downplay the suffering of disabled bodies. As well as byenkya embraces “radical vulnerability,” describing and showing his story as a story of emotional truth-saying that motivates others to do the same (ThemeGrill, 2019). I can see the impact of Byenkya’s writing and how it differs across different audiences. For disabled bodied readers, he criticizes healthcare as it is inaccessible, and the isolation and societal neglect speaks to those who might struggle with these elements of life. For me this I can see that he is trying to get the global north to address how chronic illness can exist outside of finding a cure or providing control over the pain. He also makes this complicated by comparing Uganda and Canada and how pain and disabilities are treated across boarders in a positive or negative light.

2. In Week One, we discussed the medical and social models of disability. How do you see these models reflected in Mugabi Byenkya's interview and writing? Provide specific examples.

Byenkya’s forces used to think about the medical model of disability as focuses on the biological “defect” to be treated or cured. He states how doctors are not able to explain or “fix” the strokes that have left him feeling so frustrated and abandoned: “the doctors do not know anything!... how much more of this can I take?!” (Meharalit, 2018). This shows that the medical system is not perfect and has failed him and has not investigated his experiences beyond the medical condition. At the same time, he explains the failures and harassment of the social model and how it has failed him. He states that abled body people connect their productivity to their worthiness and sharing that he learned that he must be “gentler on myself and accept that not everything could be overcome” (ThemeGrill, 2019). He understands that he is not the problem but it being society and the expectations that harm disabled bodied people. Yet when we consider Beyanka and how he complicates these models by highlighting the emotional and the objective reality of pain. While the social model is not perfect especially when comparing it to disabled bodied individuals, his experience reveals that his suffering and pain is still there despite the social barriers that might be addressed. He opens and shares the truth about emotional, doubt in spirituality and being disorientated, and how it represents a deeper understanding of disability that covers psychological, social, and spiritual dimensions.

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Question 1:

Byenkya shares his experiences with the dilemmas of dealing with chronic pain which is often invisible to the eye and misunderstood by many. He talks/ writes about his health by describing the strokes he suffered and having the ongoing pain that debilitates him. He described it as "something that never ends- just dulls". This pain if often never short lives. Chronic pain medically is pain that persists for over 3 months. Chronic pain is unfortunately something that many people deal with from prior injury. It impacts readers who can relate to this never ending pain by making them feel heard and seen. Chronic illness is very broad in diagnosis in the medical world which can be hard to find providers and support systems to help patients feel validated.

Questions 2:

He reflects on how the "traditional medical model" failed him as a patient multiple times based on him being male, black, and young. This is an ongoing effect in the medical community and often leads to patient harm due to dismissal of an issue that is very much so present. He talks about the disability world where there are social barriers and obstacles set in people who have disabilities- way. He talks about having to be put into a world/ category that was never truly made for him or people like him.

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Prompt one: The first example is when it states "I was utterly blindsided by what felt like two sledgehammers violently smashed into my temples in sync with my heartbeat." The next example is when he wrote "At the same time, the continual smashing of the sledgehammer continued." And finally to describe when the pain finally ebbed he mentioned that the sledgehammers had dulled at little. I think this analogy is important because it really captures just how bad the pain they are going through it. We've seen sledgehammers hit something and there's a lot of force behind it. Instead of just saying it felt like a hammer hitting my head he chose sledgehammer instead. I think to people who have experienced pain like this it is very relatable. For someone who has not experienced this type of pain it still get the point across because the use of sledgehammer instead of another object frames how bad the pain actually is even though the reader isn't actually experiencing it. I feel like in the US we are sometimes more open to talking about our pain because we do want to find the root cause and areas like where Philomena is from have different views on pain she even says, "pain is a sign of weakness."

Prompt six: The first is example of how they are at risk is when Zoanni states, " In some respects, they even further marginalize the needs and concerns of Uganda's most marginalized disabled people (190)." This is talking in relation to the gains in laws surrounding the disabled. The next example is when he states "Despite the existence of universal education programs, a UNICEF study found that only 9% of disabled children in Uganda were in any form of school, whether pre-primary, primary, or secondary (pg. 193)." He goes on to attribute this to the fact that there is a lack of accessibility and supportive learning environments and the overall costs of sending children to school. He also basically says hey these laws are great, but they are not feasible in some areas.

The first example in the Hopkins article is when he writes "The stigma of people with intellectual disabilities is fueled by a cultural belief that they are "cursed"." This sort of stigma is not uncommon for a lot of cultures whether it be that one with intellectual disabilities are "cursed" or "possessed". Another example is when one family states about their son "Unable to cope with his aggression and hyperactivity, his parents tied him to a tree, where he remained each day. He ate and toileted in the same place until late each evening when he would rejoin the family inside to sleep." The tying up of the child is considered inhumane in many parts of the world as it leaves him vulnerable to the environment and others. The family felt as if this was their only remaining options. The last example in this article is "Moses is desperate for a solution, he says, particularly as the family has been all but ostracised by the local community ever since Sam lashed out at some villagers who then beat him." In cultures such as these your family, village, etc are important and being ostracised can have a major effect on one's mental health. While this instance can be attributed to Sam lashing out due to an intellectual disability the village doesn't understand. It's difficult because being raised in the US we have diagnoses and tests for so many different things and areas like Uganda do not.

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Brooke Fishback’s Answers to Questions 3 & 4

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Brooke Fishback’s Answers to Questions 3 & 4

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3. How do disabled people in Uganda experience social vulnerability from policies and practices, as decribed by Tyler Zoanni? How does this differ from individuals embracing radical vulnerability, as discussed by Mugabi Byenkya?

Disabled people in Uganda experience social vulnerability by how people were treating them, however they “enacted anti-discrimination laws guaranteeing disabled people’s access to education, community life, employment, physical space, and more”(Zoanni, 2022 pg.190). Uganda is focused on helping the individuals who are disabled with being treated fairly. “All children in Uganda have a right to primary and secondary education, and this includes disabled children. To facilitate the education of disabled children, Uganda has established a national special educator training program, as well as a mix of integrated, mixed, and segregated schools for disabled students”(Zoanni, 2022 pg.190). However, what people don’t see is the type of lives they live. Even though they get “equality” to education and jobs, “they tend to train disabled people for low-paying jobs in markets already over saturated with similar goods and services”(Zoanni, 2022 pg.192). This leads to disabled people having disadvantages in their life to have a successful career and life if they chose to have one. It leads to “80 percent of disabled Ugandans (or nearly double the overall percentage among Ugandans in general) live below the poverty line”(Zoanni, 2022 pg.193) which causes disabled people to live in a society where they have to work harder than others due to the circumstances they are given based on their disability. They also say that “disabled people are treated as children regardless of their biological age”(Zoanni, 2022 pg.195). This just shows how the country sees and treats disabled people and look down upon them. In Byenkya’s article about radical vulnerability, it talks about how “those who are vulnerable are heroes as they invite us to do the same” (Byenkya, 2019). It gives a different feel as to how disabled people can be vulnerable and seen as heroes than being vulnerable and weak. They also explain that being radically vulnerable is brave and shows character and resilience in people with disabilities. Zoanni’s article made disabled people feel like a burden to society, but Byenkya’s article made disabled people feel valued, important, and like they could make an impact in the world.

4. What are "disability rights and wrongs" in Uganda, as discussed by Tyler Zoanni? In other words, what has been successful about disability rights in Uganda? What are current challenges or limitations? How does Zoanni recommend moving forward?

Disability rights and wrongs in Uganda are described as “politics focused on principles like individual rights, autonomy, and self-determination, and they are grounded in laws and policies as the basis for social change”(Zoanni, 2022 pg.190). A right that has been successful for disabled people is that they have the same rights to have an education, access to healthcare, and be respected as others in society. Success in these areas have been good for the disabled community but it does not give them the full access they deserve. Uganda portrays disabled people as having equal rights as non-disabled people, however when you look at it, there are some wrongs with these statements. Some include training disabled people to have lesser important jobs by giving them simple jobs or jobs that are being paid less due to overpopulation. Another is the enactment of these laws in society. Zoanni says “Uganda’s disability legislation exists largely on paper, while many disability programs and policies go underfunded, unfounded, or unimplemented”(Zoanni, 2002 pg.193). The problem isn’t setting the laws in place, its following them to allow disabled people to feel welcomed and to live a life above the poverty line where they won’t have to struggle to make ends meet. This is a current challenge that impacts the livelihoods of disabled people and forces them to be either forgotten about or seem less important in society. Moving forward, Zoanni says that “these Christian institutions bring disabled and non disabled people together in relations of care and support over the long term”(Zoanni, 2022 pg.195). Bringing people together and being present with one another is the best way to learn about people through interaction. By doing so, it will help non-disabled people see disabled people as equals to them and will hopefully help improve the society to allow everyone to have the same access that they deserve.

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1. How does Mugabi Byenkya represent the experiences of chronic pain in his poetry and novel, Dear Philomena? Provide specific examples. Reflect on the importance of his artistic work. How might his writing impact disabled readers and non-disabled readers differently? How might it impact readers from the Global North and Global South differently?

In his poems, Mugabi shows the harder parts of his chronic pain. He specifically mentions how he is missing out and how people look at him differently because of his chronic pain.

Mugabi says, "now I watch tennis in the hospital bed paying close attention to the ball boys/ball girls/ball children's technique" (Byenkya 3). He's watching all of his abled dreams through a hospital bed and realizing what he can and can't do now.

Mugabi also shows how other people perceive his chronic pain. This is especially noticeable during handshakes.

"your eyebrows raise
I awkwardly propel my right hand upwards
bent shoulder
bent elbow
spastic clenched right hand
lots of fatigue
your eyebrows raise higher
my spastic right hand attempts to splay out but instead starts spasming
your eyebrow raise even higher" (Byenkya 12).

Mugabi's use of "Your eyebrows raise" lets the reader understand that people make snap judgements when meeting him for the first time because of how he goes to shake people's hand.

In Dear Philomena, Mugabi uses spacing in his writing to make the readers feel a certain way or to slow down with the story.

"Jiggling my head back and forth to clear the wooziness, I stood up. The walls continued to spin as I focused on inhaling and exhaling.
Inhale.
Exhale.
Inhale.
Exhale." (Byenkya 1).

This section he purposefully spaces out the inhale and exhale to get the reader to slow down and feel what he was feeling in that moment. So, he not only shows how his pain was affecting him in that moment but the way he stylized the writing made it so the reader felt similarly.

"Missed Call from Philomena
Missed Call from Philomena
Missed Call from Philomena
Missed Call from Philomena
– Messages –
Philomena
Please pick up your phone!!
Mugabi
I’m sorry, I’m not feeling well enough to come to the phone right now, but I can text?" (Byenkya 1).

The way Mugabi spaces this section and uses italics to his advantage really makes this seen more immersive and makes it feel like the reader is looking at texts over a phone.

Disabled individuals and non-disabled readers would view Mugabi's writing differently.

As a physically abled person, Mugabi's writing in Dear Philomena really made me feel as though I was getting a glimpse of what some people with chronic pain experience. I was hit with so many emotions, hurt, empathy, panic, and trust. It was really helpful for me to see what Mugabi said Philomena was doing correctly. Philomena is a good example of someone who treats others correctly no matter what disability they have or don't have.

My guess, although I can't be sure, is that a lot of disabled individuals would find comfort or similarity in Mugabi's writing. Particularly in his poems where he grieves the activities he now struggles to do. I feel there would be more kinship, from one disabled individual to another, they understand some of what he is going through and can appreciate his willingness to share it with the world.

In terms of Global North and Global South, and this might be a particularly westernized opinion, but I feel that the Global South might see Mugabi's hospitalization as far different than the global North. The global South is often characterized as a poorer more underdeveloped country with less access to the latest healthcare. This means that the hospitals Mugabi describes lying in, in his poems, would look a certain way. Whereas a person from the global North might see the hospital as a well-developed place with access to good treatment.

Plus, in general, both the global North and South tend to view chronic pain differently. I think the North would see Mugabi's pain as something they could cure, whereas the South would be more likely to see his pain as a testament to his survival and all that he had been through.

2. In Week One, we talked about the medical and social models of disability. How do you see these models reflected in Mugabi Byenkya's interview and writing? Provide specific examples.

"Being disabled requires laying in bed by the sidelines for the duration of your life right hand spastic, an effect of the paralysis from your first stroke right knee throbbing in pain from a patella fracture that never healed properly left calf painfully spasming non-stop beyond your control head propped up on a rolled-up towel to ease the muscle pain from neck spasms ears assaulted by the constant onslaught of sensory overload ready to have a seizure at any moment" (Byenkya 6). This section in his poem specifically is very reminiscent of the medical model because Mugabi is listing the physical aftereffects of having a stroke. It's very 'my disability is just these physical problems' because for Mugabi that's how it can sometimes feel.

However, in this scene, "my socks absorb the sweat from my soles I wish wearing gloves was more socially acceptable your eyebrows raise I awkwardly propel my right hand upwards bent shoulder bent elbow spastic clenched right hand lots of fatigue your eyebrows raise higher my spastic right hand attempts to splay out but instead starts spasming your eyebrow raise even higher I attempt to place my hand in yours you have been awkwardly waiting for me to complete the handshake, so as soon as my hand is in the general vicinity, you grip firmly" (Byenkya 11). Mugabi is describing his disability in the way this his anxiety rises when people silently ogle and judge him. This section focuses on how both he and the other individual feel about the disability rather than purely listing the physical nature of the disability.

This section in Dear Philomena shows both the medical model and the social model.

"I’m going to type out the very long story, this may take a while but is WAY better than talking
Philomena
Are you 100% sure that you’re fine with typing out everything???" (Byenkya 1). This section shows the medical model because Mugabi focuses on the fact that the easiest thing for him to do toncombat his physical symptoms is to only type his messages. He's focusing on the easiest way to curb his symptoms. Whereas Philomena is demonstrating the social model because she is purely checking in on how Mugabi feels and if he is comfortable with his disability taking talking away from him momentarily. She's not looking at how to fix or cure him, she's focusing on the panic she feels and how he must feel because of what happened.

In the interview Mugabi says, "The most urgent perspective that I felt was necessary to explore through Dear Philomena is the truth that some things cannot be overcome. There is a narrative that all struggles can be overcome, and that if you haven’t overcome your respective struggles, it’s either not your time yet or you haven’t tried hard enough." (Byenkya 13). This shows that during Dear Philomena he is attempting to show the opposite of the medical model. He is trying to show that he can't be cured and can't just overcome his pain.

During the interview, Mugabi also states how he felt the medical model failed him.

"All of this has led me to become a stronger advocate for disabled voices like mine, particularly those that don’t fit into the neat little boxes that the medical establishment is best suited to treat" (Byenkya 16). He realized the medical model wasn't working for him, so he wanted to change the social model to show other people like him that they weren't just their pain, they are so much more.

That's how Mugabi's writing shows pieces of both the medical model and the social model.

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1.     How does Mugabi Byenkya represent the experiences of chronic pain in his poetry and novel, Dear Philomena? Provide specific examples. Reflect on the importance of his artistic work. How might his writing impact disabled readers and non-disabled readers differently? How might it impact readers from the Global North and Global South differently?

Mugabi Byenkya's artwork reflects the experiences of individuals dealing with chronic pain and disabilities by presenting personal stories that emphasize the difficulties faced by those with chronic pain, especially the misconceptions surrounding it. He points out how authority figures, like doctors and religious leaders, often attribute struggles to individual failings instead of recognizing systemic issues, reflecting the medical model of disability, which frequently lacks empathy and overlooks personal contexts (Africain In Dialogue, 2019). For example, Byenkya explains that sports can pose significant barriers for individuals with disabilities, highlighting how societal attitudes add to their daily challenges lives. His artwork is crucial because it fosters empathy and understanding. For readers with disabilities, his work offers vital support by cultivating spaces for validation and community (Africa in Dialogue, 2019). For instance, a disabled reader may find inspiration in Byenkya's writings, which encourage them to express their own experiences and connect with others facing similar challenges, thereby enhancing their sense of belonging and empowerment. For those without disabilities, Byenkya's work provides insight into the emotional and psychological struggles linked to chronic pain, helping them understand the obstacles that others face. The medical field can often be overwhelming and stressful, with physicians lacking the necessary time to connect meaningfully with individual patients (Africain in Dialogue, 2019). The impact of Byenkya's writing can differ for readers from the Global North and the Global South. People living in the Global North, where media coverage of disability tends to be less common, have the opportunity to gain new insights that can reshape how they view disability and resilience. Meanwhile, individuals from the Global South—where disability is frequently associated with poverty and social exclusion—may find Byenkya's stories more moving and personally meaningful. His work bridges cultural divides, fostering global dialogues about empathy and disability. Additionally, Byenkya’s insights extend to medical cases that fundamentally challenge the conventional understanding and classification of diseases and conditions. Often termed atypical, these cases present a broad spectrum of symptoms that deviate from established medical diagnoses, creating unique challenges in both diagnosis and treatment (Africain in Dialogue, 2019). Recognized treatment protocols often fail to yield the anticipated relief, leading to frustration among both healthcare providers and patients. In these complex situations, healthcare professionals encounter patients like Byenkya, whose behaviors and experiences may seem irrational or inexplicable within typical medical frameworks. This dissonance can lead to the hasty labeling of these individuals as 'crazy' or irrational, oversimplifying the profound complexity of human experiences (Africa in Dialogue, 2019). Instead, these cases should be viewed through a more nuanced lens: as fascinating medical mysteries.

4. What are "disability rights and wrongs" in Uganda, as discussed by Tyler Zoanni? In other words, what has been successful about disability rights in Uganda? What are the current challenges or limitations? How does Zoanni recommend moving forward?

The notion of "disability rights and wrongs” in Uganda, as discussed by Tyler Zoanni, highlights the importance of collaborative efforts from various stakeholders—namely government organizations, civil society, and the private sector—to foster an inclusive and empowering environment for individuals with disabilities. Uganda showcases numerous commendable aspects of disability rights, such as the increased representation of people with disabilities in government roles and the establishment of community-based rehabilitation programs. This progress is the result of decades of tireless work by Ugandan disability activists, beginning in the 1970s (Zoanni, 2022). For example, the work of the Uganda Society for Disabled Children has been instrumental in advocating for the rights of children with disabilities. Since 1986, Yoweri Museveni has led the National Resistance Movement, incorporating people with disabilities into national empowerment initiatives post-conflict, such as the Disability Inclusion Strategy, and committing legal and institutional resources to improve the lives of people with disabilities in Uganda. Uganda's population of people with disabilities is notably significant compared to other countries — estimates indicate that around 18% of Ugandans live with a disability (Zoanni, 2022). The constitution recognizes the rights of people with disabilities as fundamental rights that warrant respect and dignity. Moreover, Uganda has ratified the United Nations Convention on the Rights of Persons with Disabilities and implemented anti-discrimination laws, such as the Persons with Disabilities Act, to enhance access to education, community involvement, employment, and physical spaces for individuals with disabilities (Zoanni, 2022). The central government has created several offices and initiatives that address disability issues. For instance, the National Council for Disability is responsible for overseeing rights and guiding policy development. Every child in Uganda, including those with disabilities, has the right to primary and secondary education, exemplified by inclusive schools that admit children regardless of their physical or cognitive challenges (Zoanni, 2022). To foster the education of children with disabilities, Uganda has launched a national training program for special educators, aiming to enhance the quality of education for all children. However, challenges remain concerning disability rights in Uganda. Typically, training for individuals with disabilities focuses on low-wage jobs in markets that are flooded with similar goods and services, such as selling crafts or food in local markets (Zoanni, 2022). This approach reflects bureaucratic plans rather than the desires, choices, and aspirations of individuals with disabilities themselves. The interventions aim to improve the lives of people with disabilities on an individual basis, rather than addressing broader social circumstances. The author recommends developing a more comprehensive strategy that encompasses employment support programs tailored to the skills and interests of disabled individuals, along with entrepreneurship initiatives and expanded access to diverse job markets.

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Respond to at least two prompts, posted below. Be sure to refer to specific examples from the readings/media in your responses.

1. How does Mugabi Byenkya represent the experiences of chronic pain in his poetry and novel, Dear Philomena? Provide specific examples. Reflect on the importance of his artistic work. How might his writing impact disabled readers and non-disabled readers differently? How might it impact readers from the Global North and Global South differently?

2. In Week One, we talked about the medical and social models of disability. How do you see these models reflected in Mugabi Byenkya's interview and writing? Provide specific examples.

3. How do disabled people in Uganda experience social vulnerability from policies and practices, as decribed by Tyler Zoanni? How does this differ from individuals embracing radical vulnerability, as discussed by Mugabi Byenkya?

4. What are "disability rights and wrongs" in Uganda, as discussed by Tyler Zoanni? In other words, what has been successful about disability rights in Uganda? What are current challenges or limitations? How does Zoanni recommend moving forward?

5. Compare and contrast Ugandans with chronic pain and Ugandans with intellectual and developmental disabilities. Specifically, how are the experiences of people with chronic pain in Uganda, as explained by Mugabi Byenkya, different from the experiences of people with intellectual and developmental disabilities, as explained by Tyler Zoanni. How are the interests of these two groups aligned? How might they diverge? What are strategies for social change that would support the needs of both groups?

6. How are intellectually disabled children particularly at risk in Uganda, as described by Tyler Zoanni and Christopher Hopkins? What cultural beliefs lead to their mistreatment? What might be done to address the issues they face? (Note: This question requires you to have read the optional reading.)