By M. Lynn Rose &

Shakir Muhammad Usman

Center for Gender and Development Studies

American University of Iraq, Sulaimani

Author’s Note

Correspondence concerning this article should be addressed to: Lynn.rose@auis.edu.krd

Abstract

Summarizing the colloquium “Disability, Diversity, and Inclusion,” held in celebration of International Women’s Week in March, 2021, this paper explores themes of ableism in Kurdistan-Iraq. The colloquium gathered people with disabilities and nondisabled people together to create awareness, to name conscious and unconscious prejudices against people with disabilities. The participants of the event also looked at the way forward, through community mechanisms. Naming oppression is a powerful tool, and we hope that our workshop can serve as a model to other groups, especially in the Global South.

Keywords: ableism, discrimination, epistemic violence, pernicious ignorance, testimonial quieting

In March 2021, the Center for Gender and Development Studies at the American University of Iraq, Sulaimani, hosted a colloquium for disabled and nondisabled people in the community to talk about ableism. Below, we summarize the context in which people with disabilities live in Kurdistan-Iraq, then provide an overview of our workshop.

Background: People with Disabilities in Kurdistan-Iraq
In Kurdistan-Iraq, an estimated—and probably underreported—100,000 people of the population of five million live with disabilities (European Network on Independent Living 2019, para. 2). At the Center for Gender and Development Studies (CGDS) at the American University of Iraq, Sulaimani (AUIS), we take an intersectional approach to social justice, with an emphasis on disability justice. Working with the active organizations for people with disabilities in Sulaimani, a city of about one million, we strive to bring awareness of disability rights through teaching, research, and community involvement. This paper results from our workshop “Disability, Diversity, and Inclusion,” which was held in celebration of International Women’s Week in March, 2021, and included representatives from seven of the advocacy groups in Sulaimani and one in Halabja, the nearby city famous for Saddam’s chemical genocide.

Iraq is a war-torn country, and Kurdistan, while at present more safe and peaceful than the rest of the country, does not escape this legacy. From Saddam’s genocide campaign in the 1980s to the ISIS invasion just a few years ago, war interacts with disability in many ways. Even when there is no active combat there are landmines, which have disabled numerous people. The Handicap Union of Kurdistan, for example, includes many people who have lost limbs from mines. Additionally, the trauma of warfare, including torture and displacement, has left its scars as psychological and psychiatric disability, for which there are staggeringly few services.

The Kurdistan Regional Government, a parliamentary democracy established in 1992, has had growth pains. Much of the Kurdish population depends on the government for their salaries, including disabled people who have pensions, but the government has been unable to pay these salaries. In 2020, only four months of salaries out of twelve were distributed, and these four salaries were reduced by up to 21%. The pattern for 2021 appears to be about the same. The full monthly benefit for a disabled person would have been the equivalent of about $100 USD. Kurdistan has a lot of poverty in general; in particular, the Rozh Society for People with Disabilities estimates that 80% of the population of disabled people lives in poverty.

Two very good laws, albeit more care-based than advocacy-based, one Iraqi (Law 38, passed in 2013) and one Kurdish (Law 22, passed in 2011), protect and provide for people with disabilities. Unfortunately, neither law has been implemented, and disabled people report that, when they push for implementation, they are stalled; for example, by being asked for endless trivial details. The Iraq government signed the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in 2013, but its provisions, too, have been ignored. In effect, then, there is very little legal recourse for even the most egregious discrimination against people with disabilities. All of the eight major advocacy organizations for disabled people in Sulaimani have fought tirelessly for these laws and policies to take effect, to no avail at this writing.

In addition to legal and political impediments, the social aspect of stigma prevents people with disabilities from moving freely and having access to the services that they need. Kurdish society is centered around the extended family, which is a place of love and security, and also a place of shame and isolation. While few children with disabilities will end up at an institution, they are often hidden away at home. Families are reluctant to admit that they have a disabled family member. The Brain Paralysis Organization wants to be very clear about their term for many people with Cerebral Palsy: isolated and without services, they spend their life as “living corpses.” (CGDS, 2021b).

Women with disabilities have a double stigma. In this traditional society, a girl’s role is to be married and have children. Females with disabilities are at a double disadvantage at least. Without the time, resources, or support to deal with menstruation, for example, families opt for hysterectomies (in addition to the female circumcision—for disabled and nondisabled girls—that is still practiced in some places). Even without a hysterectomy, disabled women rarely bear children because beliefs remain, some accurate and most inaccurate, about transmission of the disability.

At present there is no recorded history of disability in Kurdistan, even though history is very important to acknowledging a common culture. There is very little sense of disability culture or disability pride. While there are, of course, disabled artists and craftspeople, their products are often sold along the fundraising or charity model. Speaking of charity, private companies and religious institutions provide much more support for disabled people than the government. While this support is critically needed, it creates a vicious circle, reinforcing the misperception that people with disabilities are dependent and unable to work.

The immediate barrier to service access is the most obvious: in general, people with disabilities are unable to maneuver around any public area, or to enter any given building even if they are able to reach it. Whether blind, cognitively disabled, deaf, mobility impaired, on the spectrum of autism, short-statured, psychiatrically disabled, or in any other way disabled, this part of the world is inaccessible; any impairment, therefore, is likely to be disabling.

The Colloquium

Twenty participants from different ethnic, socio-economic, cultural, and ability backgrounds attended our colloquium and participated in it, forming four discussion groups. Our participants represented the Blind Union of Kurdistan; the Brain Paralysis Organization; the Deaf Society of Kurdistan; the Kurdistan Handicapped Organization; Rozh Society for People with Disabilities; the Short-Statured Organization; and the Thalassemia Society. Also participating were four AUIS undergraduate students minoring in gender studies, along with visitors (via Zoom) from Norway and Pakistan. The colloquium is summarized on the CGDS website (2021a).

The event consisted of two full days, with one week in between. On the first day, we presented a theoretical overview of ableism, which the participants discussed in terms of their own lives. During the week between, each group conducted observational research. The groups identified different models of ableism in their surroundings in the cities of Sulaimani and Halabja, to analyze the relationship between the society and people with disabilities in terms of ableism. They then presented their findings in the second full-day session. The presentations are also summarized on the CGDS website (2021c). Because UNFPA (the United Nations Population Fund) and the EU (European Union) funded this activity, we were able to meet in a well-appointed conference room and share lunch together; more importantly, we were able to hire a sign language interpreter (sign interpreters are rare, and do not work in pairs) and a Kurdish-English-Kurdish interpreter.

We organized the sessions into overviews of intersectionality and diversity and inclusion; models of disability; and the varieties of ableism (CGDS, 2021c). Within the latter, after defining ableism, we first introduced the concept of internalized ableism, after which we presented epistemic (rhetorical) violence. Next, we moved to additional forms of ableism: structural ableism; cultural ableism; medical ableism; and financial and legal ableism. We concluded with a discussion of the community and its practices. At each step, the four small groups discussed the concepts and the ways in which they observed each one in their own lives, followed by whole-group discussions. The sections below summarize each of these components.

Intersectionality

Because we held this workshop as part of International Women’s Week, we began the workshop by explaining the place of disability in intersectionality. Along with factors such as ethnicity, gender, age, and sexuality, our ability contributes to our identity and to our place in the socio-economic system of oppression. We can’t understand any factor of discrimination fully on its own: any characteristic operates within a network of identities. We will not have full gender equity without understanding the factors of class, and we will never have respect for ethnic diversity until we have respect for the diversity of abilities.

Diversity and Inclusion

In order for all of us to be on the same page, we formed a working definition of disability. We agreed that disability is an impairment that affects activities of daily life, that it can be physical, sensory, mental, cognitive, intellectual, developmental, or psychiatric, and that it can include chronic illness. One can be born with an impairment, or one can acquire it. When it is seen as a loss, or a lack, this is a deficit perspective. We concluded that disability is normal. We also defined ableism as a belief that disability is not normal, and as a system of oppression based on this belief.

Next, we looked at diversity, equality, and inclusion, and at the ways in which they help to create healthy environments, and how awareness—or lack thereof—is a critical component of appreciating diversity. Diversity and inclusion, the group decided, is more than policies, programs, or headcounts. It is a process that encourages people to develop deeper trust and commitment to each other. A diverse and inclusive place is one that makes everyone, regardless of their age, gender, race, ethnicity, religion, status, or education, feel equally involved and supported in all circumstances.

We pointed out that diversity and inclusion are interconnected concepts, but that they are not the same. Diversity is about the representation or structure of a group, while inclusion is about the contributions, presence, and perspectives of the group’s participants, and how they are valued and integrated. A culture of diversity and inclusion values, embraces, and celebrates individual differences, thereby improving equity in any given community.

Sometimes, though, in the hustle of activism and fighting for our own or others’ rights, we tend to exclude people because of our “blind spots.” We suggested several ways to address these gaps: first, we can identify an honesty critic, a friend who is able to provide tough feedback. Second, self-awareness: we can ask ourselves how our actions affect us, and the people around us, from the inside out. Third, self-reflection: at the end of the day, we can ask ourselves what went wrong and what was brilliant about the day, and how we might improve as we continue to seek social justice. We can challenge ourselves by emerging from our comfort zones to understand unfamiliar people and experiences. Finally, we can explore the silences. Silences are valuable moments that let us rearrange our next steps by checking our objectives and asking ourselves if there are any blind spots that we are ignoring.

At this point, small groups discussed diversity and inclusion, and reported that embracing diversity and inclusion is a win-win situation for everyone. They saw it as an opportunity for personal development. One discussant said that people are created by God, who created people differently because diversity means inclusion. Another said that some people misunderstand diversity—that a deep trust and commitment is lacking—and that one of the goals of this gathering is to learn how to change that. Another observed that diversity is about creating a society that is appropriate for everyone.

Models of Disability

Continuing to develop a common understanding of disability, we gave an overview of the medical and social model of disability (CGDS, 2021c) by explaining that when the medical model is in operation, we see the individual with the disability as the problem who should be fixed. When the social model is in operation, we see that it is our systems that should be fixed. We also put forth disability studies, disability history, disability advocacy and alliance, and disability activism as ways in which the social model can overtake the medical model. For further reading about the medical and social models, we referred our participants to Introducing Disability Studies (Berger, 2013). We also referred to Keywords for Disability Studies (Adams et al., 2015) as a convenient reference guide.

An important caveat when considering the social model in the context of the Global South is that the social model was developed in the Global North, with the presumption of the ideals of personal independence and freedom. In the Global south, generally speaking, one is only as important as one’s place in the family. Family members remain in the family until and unless they start their own family units. While a disabled person in the West living in her own apartment or an independent living home is a sign of success, it would be a sign of shame—of the family’s inability to provide for a member, or of a family member’s inability to be part of the family unit—in Kurdistan-Iraq. Anmol Bhatia (2017), writing about the cultural differences of blindness in the United States and in India, noted that, in India, “being independent means your parents do not care for you” (p. 40). We also referred to Disability in the global South (Grech & Soldatic, 2016) as a starting point for some of the contextual issues.

Ableism
Globally, the second half of the 20^th century and the first quarter of the 21^st century have seen some major social improvements to include people with disabilities in the socio-political process. As a result of the activism of disabled people and their allies, advanced and inclusive education systems in some parts of the world—usually the Global North—have paved the way for a better environment, but in other parts of the world—usually the Global South—ableism remains a barrier. In our understanding, ableism exists in different shapes and forms, and influences our surroundings on various levels. Ableism is often invisible, disguised as “just the way it is”: a flight of stairs makes access impossible for a person using a wheelchair, but instead of seeing the flight of stairs as a form of architectural ableism, we see it as the way things are…regrettable for the person who would like to enter the building, but an inevitable fact of life. We drew inspiration about naming ableism in everyday life from—among other sources—the edited collections Lived experiences of ableism in academia (Brown, 2021) and Disability visibility (Wong, 2020).

Our goal in this colloquium was to make clear how ableism operates and manipulates, and how it reflects our misunderstandings of disability. After reviewing the definition of ableism—as a belief that disability is not normal, and as a system of oppression based on this belief—we expanded the definition to add that this system places value on people’s bodies, minds, and ways of living based on conventional ideas of normalcy, intelligence, and excellence. We added that ableism is a form of systemic oppression in which society determines who is valuable or worthy based on appearance, ability to produce and excel, and to behave in conventional and expected ways. We then outlined several ways in which ableism manifests, pointing out that these concepts are interconnected and overlapping.

Internalized Ableism

Internalized ableism is the belief of a disabled person that being able-bodied and able-minded is preferable to any other way of being, and then applying this belief to oneself and to other disabled people. It also includes modifying one’s own behaviors to appear more conventionally able. Just as internalized misogyny causes women to hate themselves and other women, ableism causes disabled people to hate themselves and their impairment, and to hate other disabled people and their impairments. Internalized shame causes people affected by it to consider themselves as a burden, a misfit, and unwanted. It can cause further damage to those who are already suffering from other types of ableism. Next, we turned to ableism beyond the individual.

Basic Injustice: Epistemic Violence

Epistemic violence, also known as rhetorical violence, is knowledge-based violence. This term was coined by the Indian scholar Gayatri Chakravorty Spivak, who believes that colonial and western mindsets undermine the knowledge and scholarly work of the Global South. Spivak identified the lack of respect to the scholarship and the research of the Global South as a violent act. “Epistemic violence means an act of deliberately, intentionally, actively or consciously refusing, ignoring, neglecting, obstructing or/and undermining someone’s approach, understanding or interpretation of an event or a piece of information and knowledge” (Shakir, 2021, p. 3588). It uses intelligibility and knowledge, or lack thereof, as a core factor to sabotage or attack someone’s integrity. We gave, as an example, this scenario: a survey shows that in a certain area there are fewer women politicians than men, and someone then interprets this as an example of women being less capable of excelling in politics. This interpretation is epistemologically violent. Interpreting or considering someone’s knowledge or understanding as inferior, thus not valuable or trustworthy, undermines their capacity and ability to possess such information. We then outlined three main types of rhetorical violence: testimonial quieting, pernicious ignorance, and silencing.

Testimonial Quieting. Testimonial quieting is a type of epistemic violence. It is an act of ignoring, disregarding, or brushing off the testimony of the one who is delivering the message. In this type of violence, the listeners perceive that neither the person delivering the information nor the information that is being delivered is worth taking seriously. The authenticity of the information and the capability of the messenger is challenged and questioned, which results in quieting the information giver. “In this type of epistemic violence, writers’, knowers’ or speakers’ information is devalued by thinking that their testimony is not worth considering. Testimonial quieting is a form of violence that uses repetitive conscious or unconscious devaluation of knowledge as one of the main ideas behind an act of violence” (Shakir, 2021, p. 3590-91). One of the most blatant ways in which people with disabilities are silenced is the government’s consistent disregard for their voices regarding legislation.

Pernicious Ignorance. Pernicious ignorance, or ignoring, is a type of violence that causes harm to the people involved in an act or event. It causes harm due to the gap between the message being given and the message being received. In whatever way the message is delivered by the messenger, it is not received. The most important point is the harm caused by this ignorance. Even if it does not cause any harm, it is still ignorance, but it is termed benign ignorance. “The harm caused by pernicious ignorance can be emotional, physical, social, institutional, organizational, racial or communal” (Shakir, 2021, p. 3589). Pernicious ignorance and testimonial quieting can work as tools to silence the voices of those who are speaking out about their concerns. As a result, they can cause severe harm and a long lasting impact on the victim’s life (Shakir, 2021). Our groups, reporting back after their week of observation, noted the alarming frequency of pernicious ignorance. A representative from one of the disability advocacy groups has experienced having his own recommendations ignored, then hearing them praised when they come from a nondisabled person. As another example, the needs, and even the existence, of short-statured people are simply ignored in public places.

Silencing. The ableist culture in which we live has grown proficient at ignoring and silencing the testimonies of disabled people. Silencing interrupts, damages, and distorts communication exchanges between the messenger and the receiver. There are two categories of silencing: instances of silencing, which is a single, non-repetitive instance of an audience failing to meet the intentions of the speaker; and practices of silencing, which is a repetitive, reliable occurrence of an audience failing to meet speakers’ intentions. An example of an instance of silencing is the following: Ms. A talks about financial matters of a multinational company, and Mr. Z does not pay attention, thinking that a woman is incapable of handling such complexities. Mr. Z has devalued and silenced Ms. A’s words on the basis of her gender. An example of a practice of silencing can be seen in US history: women and African Americans were not allowed to vote or to take part in the political process because of their perceived lack of knowledge and capacity to understand the complexities of the political system. The groups provided several examples of both instances of silencing and practices of silencing. As an example of an instance of silencing, one of our group members entered a bank and asked to withdraw money from her account, but was refused on the basis of her appearance—she uses a wheelchair and has voice disfluency. The bank employees deemed her unfit to manage her own money, based on their misperceptions of her capabilities.

Structural Ableism

The participants of this workshop came to understand that ableism is more than a simple attitude. It is an ingrained concept of superiority and lack of empathy. Although some communities have explored ways of being all-inclusive and serving the needs of every individual, we are nowhere near success. Both nondisabled and disabled people have suffered from structural violence, but disabled people have suffered more due to the lack of opportunities and ableist attitudes. In simple terms, although structural ableism is about lack of facilities, such as sidewalks, wheelchair access, elevators and so on, in reality it sends the message to an entire community that disabled people are not welcome. It includes design barriers, such as poorly designed rooms, furniture that is bolted down or too heavy to move, door knobs that are hard to use or doors that are too heavy to open, elevators that are obstructed or difficult to find, and so on. The impact of structural ableism is hard to identify and rectify. Usually, physical violence is evident and apparent, but structural violence is hidden and silent. It was all too easy for our groups to find examples of structural ableism: restaurants with steps, uneven pavement, and lack of accessible transit are ubiquitous. Especially egregious is the lack of accessibility in places whose main purpose is to be inclusive and welcoming to everyone: parks and mosques. The groups also pointed out that, in terms of mosques, women with disabilities face double discrimination, as both disabled and nondisabled females are segregated from males in mosques.

Cultural Ableism

Cultural ableism includes ableist stereotypes: the belief that disabled people are lazy, or inspirational, or violent, or maladjusted, or predatory, and so on. One of the group members brought a newspaper item as an excellent example of cultural ableism: two men are in a tea house; one man is helping another to drink a cup of tea. That this is a news item is cultural ableism; in addition, the caption lauds the helper as a blessed and generous individual and the drinker of tea as unfortunate and pitiable. Cultural ableism also includes such phenomena as the lack of representation of disabled people in the media. When they are represented, the portrayal is often negative, and nondisabled people usually play disabled characters. Storylines portray disabled characters as angry and difficult, or as predators or highly accomplished “supercrips.” Here, we introduced the idea of inspiration porn and its dangers, referring to Don’t call me inspirational (Rousso, 2013).

Disabled people in the media usually want to be cured, or, if not, they would rather die. We can see another form of cultural ableism in the curriculum and the community. Disability culture and disability community is largely invisible; disability rights history is not taught; disability culture and disability pride is very rarely depicted. An additional kind of cultural ableism has to do with segregation: disabled people, historically and currently, are segregated from nondisabled people. This happens through the lack of accessible public transit, through segregated education, and through forced institutionalization, which brings us to the next category.

Medical Ableism

Institutionalization is one example of medical ableism. The lack of accessible community spaces means that disabled people can end up in jails or prisons, or in psychiatric wards. Medical ableism is also seen in the forced sterilization of disabled children and adults, emphasizing the flawed belief that it is the disability that is the cause of the problem and not the structural hurdles. One of the results, as it came out in the group discussion, is that although medical care is affordable here, most disabled people choose not to go to receive routine medical care because of how they will be treated. One group member’s relative was sterilized, without being informed or consulted, because she has a cognitive disability. Her family feared that she would become pregnant, thus bringing shame, and that if she did bear a child, the child would also be disabled. While this workshop did not go into the history of eugenics, we pointed out that sterilization can be considered an act of genocide.

Financial and Legal Ableism

Financial ableism can be seen all too easily in the employment rate of people with disabilities and the pay per hour. Unemployment rates for disabled people are generally very high; wages, when they exist at all, are low. Our participants mentioned that if they were to mention disability on their CV, they would never be invited for an interview regardless of their qualifications. We also see financial ableism manifest in the lack of accessible housing options, especially in affordable accessible housing options.

Legal ableism is seen in unenforced laws and stalled legislation that would, if enforced and enacted, protect the rights and wellbeing of people with disabilities. A further complication arose in the group discussion: in this inequitable situation, there is a real danger of seeing previous times in glowing terms, even those under Sadaam and other dangerous administrations.

Community and its Practices

We ended our colloquium by looking at the potential of community to address discrimination against people with disabilities. We pointed out that community is not a place, a building, or an organization, but a feeling and a set of relationships that can exist in many and various forms. Its inhabitants maintain communities to meet common needs. Alice Wong (2020) outlines community as a political force (pp. xviii-xix), community as power (p. xix), and community as resistance (p. xix). Demystifying disability (Ladau, 2021) had not been published at the time of our colloquium, but, because it is an excellent guide to healthy community, we would refer to it in any future versions of the colloquium.

Most importantly for our purposes, communities are change agents, because they can make a significant impact, positive or negative. Their support systems can effect change. The community is a networking base, providing opportunities for social contact on an interpersonal level, as well as among groups and between groups and formal institutions of power. An inter-community sports system, for example, can build trust and fill gaps. A community can provide opportunities for people with leadership skills to foster change, and it can highlight and promote social responsibility, advocating for diversity, inclusion, equality, peace, and development ideals. Through our communities, we can make people aware that no one is poor, or less skillful, or less intelligent by nature; one’s disadvantage depends on the extent to which one has been ignored or exploited.

The participants in this colloquium live their lives steeped in community participation. They spoke of having an attitude of service, of serving disabled people as a personal responsibility, and of supporting disabled people not from pity but from a view of humanism. They saw social justice, inclusion, and awareness-raising as a personal responsibility. They defined community leaders as those people who speak up.

The colloquium was an impetus to push for, and succeed in, offering the first disability studies course in Iraq. “Introduction to Disability Studies,” held in spring 2022 at AUIS, was a great success, in part because community members with disabilities spoke in the class and worked with the students. As of this writing, “Disability Studies Beyond the Classroom,” a service learning course that incorporates allyship, is undergoing review.

Community paired with awareness is a powerful agent of change. Naming the varieties of ableism is an empowering antidote to its draining presence, and a bridge from oppression to advocacy.

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