A Thesis
entitled
Experiences of Bolivian Disabled Activist Women
by
Iblin Edelweiss Murillo Lafuente
Submitted to the Graduate Faculty as partial fulfillment of the requirements for the
Master of Arts Degree in Sociology
______Dr. Karie Peralta, Committee Chair
______Dr. Ally Day, Committee Member
______Dr. Shahna Arps, Committee Member
______Dr. Amanda C. Bryant-Friedrich, Dean College of Graduate Studies
The University of Toledo
May 2020
© 2020, Iblin Edelweiss Murillo Lafuente
This document is copyrighted material. Under copyright law, no parts of this document
may be reproduced without the expressed permission of the author.
An Abstract of
Experiences of Bolivian Disabled Women
by
Iblin Edelweiss Murillo Lafuente
Submitted to the Graduate Faculty as partial fulfillment of the requirements for the Master of arts Degree in Sociology
The University of Toledo May 2020
Women who experience disability in Bolivia have been largely ignored within the
Disability studies and Feminist scholarship. The daily situations that these women face are not documented, which contributes to their oppression, invisibility and lack of public policies that address their issues. This thesis presents global south experiences of disabled
Bolivian women and describes how their active involvement as disability activists shape their identity, their social and political engagement and how they navigate social institutions. Using a series of questions framed by past disability activism scholarship, the global disability agenda of the United Nation Convention on the Rights of Persons with disabilities, and previous scholar activism in the field of disability, data was gathered, explored, analyzed through transnational feminist and global south disability studies perspectives.
The aim is to identify how disabled activist women’s experiences in Bolivia may be different from the existing literature on disability, explore their activism and political agenda as examples of a new transnational feminist studies approach to disability, and propose a new theoretical understanding of disability by focusing on the unique social,
iii cultural and political environment of Bolivia. The sources of information for the thesis include unstructured interviews and official Bolivian Government documents. This study is important for developing policies and practices that attend to the needs of disabled women in Bolivia.
Key words: Transnational feminist disability studies, Bolivian disability studies.
iv
To my grandmother Yola Rodriguez de Lafuente, who peacefully transcended as a beautiful angel in the middle of this research and to my beamish niece Vera, who arrived right at the same time. May the happiness you both have given me blossom endlessly.
v Acknowledgements
My heart and ajayu belong to many places, and I am thankful to every piece of generous land that nurtures me. Thanks to my beloved Achachila Illimani, as well as the glorious sky from Toledo. My bestowed admiration and gratefulness to all the brave and wonderful Bolivian women who contributed with their time and stories to this research. I am grateful to all the department of Sociology and Anthropology at the University of
Toledo for the support, not only to produce international research, but to participate in different sociological conferences to share my findings. It is a truly magnificent department, and I will miss everyone. Kind Pat and all professors, as well as fellow
Master students, Solomon, Krista, Angela, Kelsey, Simon, Connor, Priscila, and Robin. It was a hectic experience, but it was fun to share it with you. Working with amazing scholars as part of my committee was an honor. Special thanks to Prof. Peralta, for providing such invaluable academic and personal commitment, guidance and inspiration.
Thanks to Dr. Day, who opened my mind through enlightening conversations, as well as
Dr. Arps, thank you for your thoughtful suggestions and time. Thanks to Dr. Sherry, for his guidance.
Thanks to my visionary mom, Zulema Lafuente and caring dad Jose Luis Murillo for tenderly showing me rainbows after any rain. To my sisters Marcela and Solvej for healing my wounds and fears through magic and hope. To my loved one, Ricardo, for softly holding my hand as we blossom. Also, thanks to my grandfather Serafin for teaching how to read, write and ride a bike. To my grandmother Rosa, for sharing her passion for history with me. Finally, thanks to all my great grandmothers, for resisting and leaving space for new Pachakutis.
vi Table of Contents
Abstract ...... Error! Bookmark not defined.
Acknowledgements ...... vi
Table of Contents ...... vii
Chapter one ...... 1
I. Introduction ...... 1
A. Problem statement ...... 3
B. Research questions ...... 4
a. Primary research question ...... 4
b. Secondary research questions ...... 4
C. Objectives ...... 5
Chapter two ...... 6
II. Literature review ...... 6
A. Women and disability in Bolivia ...... 6
B. Disability studies ...... 8
C. Global disability studies ...... 10
D. Disability and postcolonial theory ...... 14
E. Southern disability theory ...... 15
F. Feminist, queer, crip studies ...... 17
G. Debility, capacity, disability ...... 19
H. Crip studies ...... 23
vii I. Coming to claim crip ...... 25
J. Mad studies ...... 27
K. Ableism ...... 28
L. The ability contract ...... 33
M. Disability activism ...... 34
N. Transnational feminism ...... 36
O. Global feminisms ...... 38
P. Grassroot Activism ...... 44
Q. Women’s studies ...... 46
R. Latin American feminisms ...... 47
S. Bolivian feminisms ...... 50
Chapter three ...... 55
III. Methodology ...... 55
A. Study participants ...... 57
B. Sampling ...... 63
C. Recruitment plan...... 63
D. Data collection and thematic analysis procedures ...... 64
E. Ethical considerations ...... 66
a. Ability to consent ...... 66
b. Recording consent ...... 66
c. Privacy ...... 67
d. Harm to participants...... 67
viii e. Benefits of research ...... 68
f. Protection of data ...... 68
G. Dissemination plan ...... 68
Chapter four ...... 70
IV. Results ...... 70
A. Embodying multiple identities ...... 71
B. Exercising disability activism ...... 95
a. Exercising disability activism through work and sisterhood ...... 95
b. Professional engagement ...... 96
c. Sisterhood ...... 99
C. Social change and political consciousness ...... 106
a. Participation in “La Caravana” ...... 109
b. Political agenda...... 117
c. Education ...... 125
d. Economy ...... 143
Chapter five ...... 166
V. Conclusions ...... 166
A. Embodying multiple identities ...... 167
B. Exercising disability activism through work and sisterhood...... 168
ix C. Navigating social institutions ...... 172
D. Theoretical implications ...... 175
E. Methodological implications ...... 176
E. Practical implications ...... 177
F. Limitations ...... 178
G. Areas for further research ...... 179
References ...... 180
Appendix A ...... 201
Consent form ...... 201
Appendix B ...... 203
Formulario de consentimiento ...... 203
Appendix C ...... 205
Correo electrónico de reclutamiento ...... 205
Appendix D ...... 206
Email recruitment letter ...... 206
Appendix E ...... 207
Unstructured interview guide ...... 207
Appendix F...... 208
Translation statement ...... 208
x Chapter One
I. Introduction
Disabled people in Bolivia face widespread prejudice, economic and social exclusion, inaccessible built environments, institutionalization, a severely underfunded social service system, and a legal system that denies them equal recognition before the law
(Buell, 2013; Dudzik, Elwan, & Metts, 2002; p. 39; Filmer, 2008; Grushka & DeMarco,
2003). The vast majority of disabled people are poor and do not receive any disability support. Many are left with few options and resort to begging (Friedman, 1973; Ramírez
Hita, 2014). Disablist attitudes are widespread, both in the general public and in the
Bolivian Government. In the Bolivian Constitution, disabled people are framed as
“needing protection,” in the same way that women, who are the victims of violence, are portrayed.
The experience of disability in Bolivia has much in common with that in other countries in the global south that are impoverished, as a result of neoliberal global economic policies. Soldatic (2018) has demonstrated the harmful effects of such policies on disabled people, particularly on marginalized communities living with disability such as disabled women. These policies are the broader forces which create the context for unmet human needs globally. However, the pluri-culturally, patriarchal, racial, misogynist, oppressive system and opened colonial wound of Bolivia create different circumstances, barriers, and opportunities for disabled women. Such experiences are distinct from those of disabled women in the other parts of the global south, as well as different from the global north. Differences are important because they contribute to a global and contextual understanding of disability. Exploring disability and gender
1 through activist women´s experiences provides a clear scenario of how conceptual, geopolitical and body frontiers or borderlines cohabite in the idiosyncratic cultural mix or ch´ixi social context of Bolivia. Furthermore, disability still holds a privileged category in
Bolivia, as only people who have medical diagnosis are granted such identity.
My work will, therefore, draw on the literature dealing with “global south disability studies” (Ghai, 2002; Grech, 2015a; Meekosha & Soldatic, 2011) and feminist disability studies (Garland Thompson 2005; Kafer 2013), in order to analyze Bolivian disability experiences within a cross-national context embedded in a transnational feminist perspective (Falcón, 2016; Kim-Puri, 2005; Mohanty, 2013; Patil, 2011). Global north experiences may be comparable in some ways to global south experiences, but there are significant differences and those differences are critical for developing social change efforts that can be relevant to the Bolivian and global south contexts. The Plurinational
State of Bolivia is a unique and exemplary country because of its deeply rooted connection to political communal organization and indigenous knowledges. Both reflected through cultural and political discourses such as the national principal ‘Suma
Qamaña´ (living well) in the National constitution. Bolivia is in a constant struggle to embrace its pluricultural and diverse history and future. The only Plurinational State in the world, Bolivia, is constantly healing and rediscovering its indigenous legacies and colonial wounds while navigates globalization. This thesis highlights the unique social, cultural and political elements of disability in Bolivia (Crosso, 2014; Taboada Lugo et al.,
2011), including the experiences of indigenous people and the distinctive role of feminist movements in pushing for equality in Bolivia (Aillón, 2015; Galindo, 2015; Paredes,
2 2010a; Silvia Rivera Cusicanqui, 2019). It gathers information on these issues via unstructured interviews and analyses of official Bolivian Government documents.
A. Problem statement
Disabled Bolivian women are often left behind and ignored in national policies
(Pinto, Taborga, Yaksic, & Michel, 2011). This situation is shared by other women in different countries from the global south (Ghai, 2002; Habib, 1995; Maya Dhungana,
2006). Exploring Bolivian social, economic and political dynamics is problematic, because reliable national data are scarce. According to the 2012 national census 3.4% of the Bolivian population is disabled, and 50.9% of this group are women (INE, 2016).
Despite a legal framework that protects and guarantees the rights of disabled people, reality demonstrates differently. In practice, disabled women in Bolivia lack many legal, social, economic and cultural rights. Concerns in many areas such as employment and health are typically not responded to effectively by governmental institutions and public workers. Moreover, policies towards disabled women lack gender perspectives, as well as a social model of understanding. Additionally, public policies regarding women’s rights do not consider the situation of disabled women. Therefore, they are not represented in the elaboration of national plans.
Pinto et al. (2011) suggest that access to health services is not possible for more than half of disabled Bolivian women. Those who have general access still experience some accessibility barriers, as well as discrimination from medical staff. There are few initiatives that tackle sexual and reproductive health services that are provided for this group. It is a common belief that disabled women cannot handle their own bodies, so there are cases of confinement where disables girls and women are forced not to leave
3 their houses. Maternity is considered irresponsible for disabled women, and there exist no public policies that support disabled mothers. Political representation is almost null.
Disability programs and services are not focused on women. Even though much has been written regarding violence against women in Bolivia (Arauco Lemaître, Mamani Apaza,
& Rojas Silva, 2007; Cusicanqui, 2015; Derks, 2009; Ortiz-Barreda & Vives-Cases,
2012), there is a significant gap in the literature about the specific situation of disabled women. Furthermore, issues of disability have been left out in discussions of the relationship between mental health, women and violence (Vásquez, 2007; Velzeboer,
2003). This research will therefore address the gaps in literature and national data by documenting the experiences of disabled women activists, in particular, and disabled women, in general. This thesis is an important step for integrating the views of disabled activist women in policies and practices that affect their lives.
B. Research questions
This thesis is guided by one primary research question and three secondary questions.
They are the following:
a. Primary research question
How does disability activism shape disabled Bolivian women’s lives?
b. Secondary research questions
- How is disabled activist women’s identity constructed in Bolivia?
- How do disabled women exercise their activism?
- How do Bolivian disabled women navigate social institutions?
4 C. Objectives
The objectives of this thesis are the following:
- To better understand the situation of disabled activist women in Bolivia.
- To develop a more transnational feminist disability studies approach.
The next chapter explores the literature on disability studies and transnational feminism theories. Chapter 3 describes the qualitative approach that I used to collect and analyze data. Chapter 4 presents my analysis of the data. And, finally, Chapter 5 discusses my analysis in light of past literature, as well as identifies the limitations of this study and ideas for future research.
5 ChapterTwo
II. Literature review
Existing literature recognizes that the experiences of disabled people in the global south are different from that of the global north (Grech, 2012). Nevertheless, how disability experiences are different is only beginning to be studied. Disability in Bolivia from the perspective of lobal south Disability Studies has not been explored yet.
Combining that approach with transnational feminist studies (Kim-Puri, 2005; Mohanty,
2013; Patil, 2011), including Bolivian Feminist perspectives (Aillón, 2015; Galindo,
2015; Paredes, 2010a) contributes to a new insight into this previously under-examined issue. This perspective is a breakthrough in global theories of disability and gender. The thesis explores how these theories need to be challenged or changed to accommodate different cultural, economic, and social contexts such as those of disability activist women in Bolivia.
A. Women and disability in Bolivia
Existing approaches to disability are dominated by European and North American perspectives. However, in recent years, a new field has emerged – global south disability studies (Grech, 2012). This new field looks at the unique experiences of disabled people in the global south, where the issues around disability are quite different because of fundamental human rights concerns such as access to water, food supplies, and basic sanitation (Trani et al., 2011), access to education (Eide et al., 2011), food insecurity, multidimensional impoverishment (Grech, 2015b), environmental disasters, conflict, and war as factors that lead to forced migration (Pisani & Grech, 2017). This research
6 highlights specific issues faced by disabled Bolivian women, including those related to motherhood, reproductive rights, and the issue of femicide.
By discussing femicide, this thesis will examine how the experience of disability in
Bolivia is inextricably linked to both interpersonal violence and state violence. This focus on women draws on, but also expands, Feminist Disability Studies (Garland
Thomson, 2012), which has previously been dominated by global north scholars. Despite being a signatory to the United Nations Convention of the Rights of Disabled People
(UN-CRPD), the Bolivian Government does not have any policies developed to specifically address the situation of women with disabilities. For instance, there is a
National Equal Opportunities Plan, “Women Building a New Bolivia for Good Living,” which does not mention women with disabilities (CRPD, 2016). The CRPD is one of the fundamental guides for this research; it has identified the minimum areas which need to be addressed in discussing disability in a national context. The CRPD suggests that analysis of disability in any country needs to incorporate 25 issues, which was therefore the starting point for this study’s unstructured interviews with disabled Bolivian women.
Combining information through unstructured interviews, audio-visual material, documents and analyses of official Bolivian Government documents, this thesis offers a transnational feminist perspective on disability in Bolivia.
The majority of women in Bolivia encounter interpersonal violence during their lifetime and survivors routinely develop secondary psychosocial disabilities but face a lack of adequately-funded services (Meekers, Pallin, & Hutchinson, 2013). Only 0.2% of the total national budget for health care is allocated to mental health care (Jaen-Varas,
Ribeiro, Whitfield, & Mari, 2014). State violence occurs both in the context of repressive
7 responses to social movements, such as the Government’s brutal response to disability protests in La Paz in 2016 (Guisbert Rosado, 2016b), but also in the policies of institutionalizing disabled children, unofficially allowing infanticide of disabled children to continue and in denying the legal rights of disabled people, women in particular.
(Bazán, 2012; de Hilari, Condori, & Dearden, 2009; Peres Arenas, 2008). The combination of infanticide of disabled children and femicide is another specific concern in Bolivia which has not been sufficiently explored and which will present an original contribution of the thesis.
Pinto et al.´s (2011) research for a governmental institution and the United
Nations Population Fund is a useful source of data on the limitations and obstacles that disabled women experience. Family environments for disabled women in Bolivia are described as hostile, violent, abusive and with practices of economic exploitation, but also overprotective, and with families that include more than one person who is disabled.
The job market discriminates against disabled women, given the social belief that they are incapable and, a burden. Access to education varies depending on the type of impairment they experience. However, many women stop studying because of economic limitations, lack of disability accommodation, having to take care of their children and discrimination. The majority of disabled women have experienced violence, and sexual violence has been identified as the most recurrent form of abuse amongst women who experience multiple types of impairments.
B. Disability studies
Theory about disability has been produced from different perspectives and frameworks. Oliver (1995) highlighted the importance of theory production to address
8 disability as an oppression. Personal experiences are fundamental for emancipatory disability research (Barnes & Sheldon, 2007; Oliver, 1992), as these shape political commitment. One of the “Fundamental Principles of Disability” (Oliver, 1995) is the acknowledgement of disability as a social condition opposed to impairment as a physical or mental condition. Historically, medical “disability experts” understood disability as a medical issue that should be “fixed” through financial aid and normalization processes. In contrast, organizations led by disabled people, such as the “Union of the Physically
Impaired Against Segregation” determined their interest to overcome socially imposed exclusion.
The social disability model (Oliver, 1992) is an alternative to the personal disability model, which describes disability as a personal tragedy that must be medically intervened. On the other hand, the social model understands disability as oppression imposed by society and aims for social change. It is paramount for emancipatory disability studies to include the perspectives of disabled people. However, there are plenty of other theoretical frameworks to approach disability. For example, Shakespeare
(2013) presents three approaches; a materialist, cultural and a critical realistic approach.
A materialistic approach is used to describe the disability social model. It focuses on social barriers, and it examines disability from a social perspective. Thus, it ignores the personal characteristics that disabled people might experience.
A cultural approach overlaps with Critical Disability Studies (Meekosha &
Shuttleworth, 2009) as they both analyze not only social, economic, political aspects, but also psychological, cultural, discursive and carnal aspects of disability, as well. Cultural studies (Shakespeare, 2013) draw attention to cultural industries and how disability is
9 portrayed through the media, because this will eventually determine the notions and discourses on able-bodiedness. It seeks balance between social barriers and phenomenological perspectives on disability. One of the major critiques to cultural approaches is that the importance of words, such as respect and inclusion, are not a matter of just words but of social justice (Sayer, 2011). If attention is primarily given to discursive analysis, then research might lack attention to concrete actions. Finally, the
Critical Realist Approach is progressive because it is a non-reductionist perspective, which accepts an external reality but also an inside body experience of disability. It understands disability in a relational, holistic way, but also as an oppression
(Shakespeare, 2013).
C. Global disability studies
Mallett and Runswick-Cole (2014) developed a contextual framework to understand disability, which includes the individual deficit paradigm, as well as the social, cultural, and political paradigm. This contextual framework includes acknowledgement of differences from country to country. International approaches recognize tensions between academic research and disabled people’s movements’ definitions of the disability. For example, the United Nations Convention on the Rights of
Persons with Disabilities refers to disabled people as “people with disabilities.” This concept is framed in the medical approach. Even though the United Nation’s definition of disability includes social barriers as a characteristic, it does not provide a separate definition for impairment and disability. On the other hand, Disabled Peoples
International, a Canadian human rights organization makes this difference, describing
10 disability in social terms, specifically as social oppression, and impairment as an individual condition.
Contextual disability perspectives (Mallett & Runswick-Cole, 2014) focus on the uniqueness from each geographical location, understanding that there are major differences related to access to power and resources between the global north and the global south (Chataika, 2012). Some of these contextual theoretical differences are, for instance, the influence of postcolonial theory in disability studies from the global south and its intrinsic relation to development. However, understanding disability as a global phenomenon requires academic attention not only to differences but also to intersectionality, coloniality, and materiality. Nirmala Erevelles (2014), Helen Meekosha
(2011) and Sona Kazemi (2019) provide useful, insightful and different perspectives on how global relations impact the disability studies field.
Even though Erevelles (2014) situates her analysis in a USA context, she contemplates the borders of disability as a field and where the line is drawn, while considering the intersections of race, class, gender, nation, and sexual identity. She questions ideas, such as “coming out crip” (McRuer, 2006), where situations of vulnerability are ignored, and also, questions the importance of “belonging” in the disability field. Because these politics of location will determine the content of disability scholarship. Erevelles (2014) proposes to be critical and to question the focus of research, as well as not to obliterate historical, geopolitical conditions of exploitation.
Thinking about intersections between disability, race, class, and gender make the disability field’s borderlines diffuse as it unveils similarities of oppression (Erevelles,
2014). Only by recognizing these parallels is that alliances may be encountered, given
11 that this recognition is usually denied and even used as a shield to delimit difference.
Oppressive layers are related. For instance, Kazemi (2019) considers the effect of geopolitics in the disability field by presenting a transnational disability theory, which queries the global political economy and its global production of disablement. Using the example of the Iranian and Kurdish wars, she epitomizes the link between disability and the need to economically survive. Under this reasoning is that disability is a social product of war, which has been organized and carried out by people.
Situations as such make it clear that a universal disability understanding does not exist, specially, considering that disability in the “third world”, as Kazemi (2019) calls it, does not share a struggle for equality but for survival. Academic hegemony is constructed based on western whiteness. Kazemi (2019) introduces a transnational disability model as a political project, which recognizes violence as a result of global class-relations. For example, lower-class criminals in Saudi Arabia get their hands cut off, meanwhile higher- class criminals can afford to pay and avoid this punishment. These type of examples in the global periphery have been previously ignored in the disability studies field.
Meekosha (2011) puts forward the idea that disability studies have ignored experiences in the global south.
A global context of disability is determined by power relations. These relations are reproduced through colonial practices in the disability studies field (Erevelles, 2014).
Discussions about disability are not the same between the global north and the global south, while the first may focus on human rights, independent living and distinction concerning impairment and disability definitions, discussions in the South are more connected to survival and prevention of impairments. One of the many contextual
12 specifications is poverty and its link to disability, as well as the connections to indigenous populations and colonial markers that are still present. It is here that racial and disabled subaltern identities are intertwined. In order to situate disability, it is necessary to understand the social production of impairment through, for instance, migration policies, cheap labor, civil and international wars, economic survival, environmental and nuclear pollution.
As part of the proposed goal of critical disability studies (Goodley, 2013), it necessary to create southern disability theory, which contemplates questions such as who profits from disability, who makes money from medicine treatment, and assistive devices
(Erevelles, 2014). New frameworks that include decolonizing disability studies need to be informed from southern feminist thought. Also, counting with international cooperation and solidarity from the global North and South, getting rid of paternalistic reasoning, but as well, recognizing privileges. Erevelles (2014) explores the existing relations between disability, race, gender, and sexuality within transnational capitalism, as well as the ways in which these relations have been discussed in feminist scholarship.
Her attempt to work on a carnal sociology (Paterson & Hughes, 1999) focuses on embodying theory from a historical-materialist point of view, considering notions of global citizenship. Elements such as the desirability of disability, rational and physical wholeness, and processes of becoming ungendered, slaved, poor, and black are questioned.
Erevelles (2014) inquires how disability is portrayed in the media. “Third world feminist theory”, as she calls it, and feminist disability studies are noticed to be disconnected, which aggravates the oppression by perpetuating the invisibility of
13 disability. It is only on chaotic situations such as natural disasters and war that disability in the “third world” will obtain hypervisibility, which only provokes strong emotions, instead of a transformative drive for political and material change. Therefore, Erevelles affirms that:
“…for feminist disability studies to make good its claims for transformative politics, it would have to expand its analytics from discursive interventions to a foregrounding of the materiality of structural constraints that actually give rise to the oppressive binaries of self/other, normal/disabled, and us/them.” (Erevelles, 2011, p. 129)
Deconstructing disability as another oppressive binary category is fundamental for feminist political transformations. Mainly because solidarity among oppressed identities, such as the other, the disabled and them are encountered as equals. It also forces to reflect on the oppressive categories and the discourses that perpetuate them.
D. Disability and postcolonial theory
Postcolonial theory contributes to Disability theory as it portrays a dichotomy between colonizer or abled and colonized or disabled that unravels similar power dynamics where the “Other” (E. W. Said, 1989) is the oppressed one. This relation between theories is also compatible with a gender perspective that is identified by Anita
Ghai (2012) in the Indian movie called “Black”. In order to understand the movie and how it depicts disability, it is relevant to understand the cultural context first. India’s perception on Disability is largely supported by the idea of karma or destiny that must be confronted with resignation. Thus, Disability may be considered a curse or a blessing.
14 Resistance to power and suppression are elements that go further than binary oppositions and present elements such as the ones that Memmi (2013) introduces when talking about the process of “Othering”.
For example, the Other’s identity is denied because it is not complete, so its existence is not fully recognized but only compared to the abled—bodied existence, and this Otherness collectivity is only seen as a mass without name. This demonstrates how the subject becomes an object. E. W. Said (2012) clearly recognizes the alterity built in the European construction of the Orient. Alterity that situates the Other in the periphery.
Spivak (1988) understands the subaltern as a voiceless individual, which helps to illustrate how disabled people are placed in an excluded position where their opinions do not matter. Hybridity, a concept incorporated by Bhabha (2012) suggests that identity is mutable when there are two opposing forces to it and that it creates a third space where there is an “evil eye”, as he names it, that observes outside the polarities of “Self” and
“Other”. However, this fluidity, which includes gender, class, disability, sexuality, etc. does not allow the building of a concrete collective identity.
E. Southern disability theory
Colonialism persists today in many ways, one of which Nguyen (2018) focuses is the domination of Northern epistemologies within disability studies. A pending task for critical disability studies is to make sure that Southern disability experiences, along with indigenous knowledges are no longer silenced and ignored. Certain assumptions of disability are still preventing new global perspectives from arising and engaging with already established academic scholarship. Scholars such as Ghai (2009), have already
15 questioned how discourses of a ‘global community’, which in reality come from the global North, completely ignore contextual specifications for disability understandings in the global South. Additionally, Grech (2009) looks into geopolitics involved in the development agenda of disability.
In a similar way, Meekosha and Shuttleworth (2016) propose to embrace the practice of critical disability studies, as a way of “disrupting monolithic discourses of disability in the global South” (Nguyen, 2018, p. 5), by considering concepts as ‘social embodiment’ (Connell, 2011). Nguyen (2018), argues that Southern theory inquiries how
Northern epistemologies influence politics of global development and the manipulation of Southern history and present realities by invisibilizing disabled people from the global
South. Southern theory is a legacy of intellectual conventions such as postcolonial studies and indigenous knowledge. Nguyen (2018) recognizes four textual moves that the global
North have imposed into disability studies: universality, reading from the center, exclusion and grand erasure.
A mechanism that perpetuates epistemic inequalities is the impetus in counting disabled bodies in the global south. Instruments to collect statistics used by the UN focuses on the individual functioning of the body as the main information to be considered when addressing disability, leaving behind any social, historical and cultural aspects. Including discussion about transnational capitalism, coloniality and neoliberalism is a way to resist to Northern dominance. Therefore, it is important to include these aspects in empirical research that might be done in the global south.
Nguyen’s work with Vietnamese women, allowed the author to open “up new ways of
16 mutual learning and engagement which refuse to apply Northern epistemologies on participants’ ways of seeing” (Nguyen, 2018, p. 19).
F. Feminist, queer, crip studies
The lack of future is often portrayed onto disabled bodies and minds. Kafer
(2013) envisions different possibilities for disability by first paying close attention to current rhetoric about disabled lives. By exploring a political/relational model of disability, the author pushes certain assumptions and unveils findings, such as that overcoming is not the only way to experience disability, and that desiring disability is not
‘crazy’. This model is different from the social model because it does not oppose entirely medical intervention as a disability marker and, instead, it questions such conventions.
Besides, the political/relational model does not solely focus on external barriers as determinants of disability. Finally, the relational part of this model grants attention to the constitutive binary of disabled/ non-disabled.
Disability situated within a political stance allows to contest ‘fixed’ suppositions regarding the naturalness of disability and community allies. It also visualizes connections between feminist, queer and crip theories and practices. A disability analysis of temporality reveals flexibility as a condition for ‘crip time’, as well as a ‘curative time’ that is imagined as an obligatory trail for medical intervention. Prenatal testing renders the imagined desire of “the right kind of Child into the present” (Kafer, 2013, p. 29), making disability a threat to the future, or the synonym of not having a future at all.
When looking into non-normative life temporalities or ‘strange temporalities’ we can analyze how time runs for people with different mental and intellectual impairments, as well as how time is organized around coordinating schedules with care takers. These time
17 arrangements are also made by people who, in many cases, are not considered disabled such as drug addicts, HIV and cancer patients.
Longevity is another aspect that can be examined through disability lenses, only to realize that disabled people are not expected to live long due to institutionalization and not enough services are provided for this population. The imagined pasts are also part of crip time, which have similarities with queer times such as compulsory nostalgia and the time division of a before and an after disability, especially for people who acquired disability and were not born with it. Kafer (2013) discusses crip futurity in the case of
Ashley X, whose body was medically intervened to prevent it from growing because it seemed less of a burden for her parents who would take care of her. Her ‘embodied asynchrony’ and femaleness was used as a justification for not only allowing the medical surgeries but also to promote her treatment to other parents. This case calls into question the idea of childhood development as only one that finishes with adulthood and productivity, ignoring aspects such as sexuality without reproductive aims and pleasure that cannot be communicated.
Other examples to think about crip futures (Kafer, 2013) include the case of a deaf lesbian, who openly desired to have a deaf child. The case attracted a lot of media because it proved wrong the belief that disability is abhorred. A queer disabled future was, in fact, desired, and this combination breaks with stereotypes of what a utopian future should look like. Another interesting example is the Foundation for a Better life billboard campaign, which transmits individual values that are not supposed to be discussed and, by doing so, they leave no space for ableism, oppression or discrimination analysis. In fact, it leaves no space for politics discussion or collective responsibility. The
18 figure of the cyborg (Haraway, 2006) is also invoked, as a possibility only for those who are economically capable to obtain the necessary technology.
Kafer (2013) inquiries the social construction between natural environments and disability, arguing that there needs to be more discussion within ecofeminism and disability activism to build alternative approaches to nature. Coalition politics is a proposal that results from looking at these examples, as they do not only leave room to talk about race, poverty, queerness, environment pollution, and reproductive rights, but they also force to look into possible futures that include excluded people.
G. Debility, capacity, disability
The perpetuation of power relations that normalize the right to maim occurs in different places and circumstances. Puar (2017) investigates how Israel and the United
States use tactics to debilitate certain populations based on race, ethnic and geopolitical markers. The difference between police brutality performed against black and brown bodies in the USA and the Israeli occupation in Palestine is its explicit colonial rule. In the case of Palestine, it is important to notice that genocide is not the object of analysis, but an intention to debilitate its population in order to control it. Not letting victims of violence die is a way to dominate what is left of the maimed lives, which in most cases will lead to disability. It is in this understanding that the global standardized identity of human rights disability is contested, because disability shifts historically, geographically, infrastructurally, legally, administratively, scientifically, and representationally. This shift is related to the juxtaposition of debility, capacity and disability, which are not the same.
In fact, disability will be considered as a privileged category compared to a debilitated one.
19 According to Puar (2017), the privileged disability position for some is at the expense of debilitating or disabling Others. This seesaw conundrum is a reproduction of capitalist relations. Disability rights identity plays an important role as it provides a framework, entrenched in biopolitics, that delimitate who fits in and who does not. At the same time, the economics of debility define who gets better and who gets even more debilitated based on an individualized, and profiting logic, where a slow death is awaiting for those who cannot access to technology, capacitation and rehabilitation. But, most importantly, slow death is for the ones who can serve to be exploited as their bodies underpin the whole biocapitalist system. A significant observation about the ontology of the disabled subject has to do with the objectification of the person, considering, for example, that some disabled people do not move or do not communicate and, therefore, are not rational or entirely human. This might be a topic of further discussion for critical animal studies, as well as posthumanism with disability studies.
The medical intervention that is constitutive for both disabled and trans bodies has not been fully explored. This is the reason Puar (2017) identifies some connections such as sense of wholeness that is made out of missing or exchangeable pieces, as well as a construction of gender normativity, white privilege and, finally, a biopolitical control over disabled/trans people. Becoming disabled and “becoming trans is a capacitation of race, of racial ontologies, that informs the functioning of geo and biopolitical control”
(Puar, 2017, p. 58). For instance, becoming disabled through an accident resulting in an amputation will most likely be defined by the work conditions and geographic location of the person, which might include a war situation. Moreover, under war, incarceration,
20 environmental toxicity or exploitative work conditions, any person is likely to be a
‘predisabled person’.
Questioning notions of disability pride (Martin, 2012) under these circumstances is pertinent, as the result of disablement is a positioning of bodies as disposable, where social suffering is a product of the global North ‘disabling’ the global South (Puar, 2017).
Rights-based disability discourses find this acknowledgement as problematic for their agenda (Macaulay, 1866). These discourses directly contribute to biopolitics of debilitation. As proposed by Puar (2015), the human rights model of disability orbits around poverty and individualized capacitation that permits the negotiation of disability.
Issues about accessibility, which are pivotal for a rights-based agenda, such as the UN human rights declaration, seem irrelevant when considering structural political disabling machinery. Futurity (Puar, 2017), for instance, is a relevant topic related to debilitated bodies that is not considered for discussion or disabling geopolitical conditions such as not having a safe territory and, more specifically, how debilitated bodies are oppressed by a rehabilitated oppressor as Israel does with Palestine.
Puar (2017) carefully explores how homonationalism frames the behavior of
Israel to justify their superiority over middle east countries. She emphasizes Israel’s intention to injure and not kill Palestinians, all planned as part of collateral damage that might even be seen as merciful. In reality, effects of debilitating a nation include transforming their time into an unhuman time of slowly dying.
Neoliberalism is essential for the understanding of disability economic and social formation. Fritsch (2015) explores how biocapitalism is entrenched in the life sciences and biotechnology that have shaped the disability relations. US disability activism has
21 developed alongside the transformation of capitalism from a Fordist production model to a scientific research and innovation centered model (biocapitalism). The consequences to this close relation between a political identity of disability and the neoliberal economic regimes is a gradation of debility and capacity as categories that are not clearly defined but still present. By examining these nuances of debility and capacity, it becomes problematic to identify disability as an oppressive homogenous category. Given that structural ableism does not affect all disabled people in the same way, it creates complex differences that are not dualistic as disabled/not disabled bodies.
Biocapitalism commodifies life and all its biological components and, at the same time, weakens the welfare state with neoliberal policies. By doing so, it individualizes risk, as a biomarker and positions the idea that “the body is inherently ill and always needs to be enhanced or made better” (Fritsch, 2015, p. 21). This new focus on production based on life sciences research has encountered a huge market for pharmaceutical and food companies, especially when referring to drug patents that must be renewed every 14 years. Another important consideration about individualizing risk as a medical condition and privatizing care is that while some patients are benefited customers, others have to be exploited for the sake of it. Kolářová (2015) presents a clear example of how this occurs at an international level by examining power relations in a care center where European elder residents are assisted by Thai female caretakers.
This is a “concrete example of emerging circuits of transnational care/reproductive labour in order to investigate the interrelation between debility and wider global biopolitical inequalities” (Kolářová, 2015, p. 78) where colonial dynamics play an important role. An element that is worth analyzing is how dementia is portrayed
22 as a new epidemic threat that is believed to damage national economies. However, few privileged ones can afford paradisiacal care in Thailand, which is advertised as a place of rejuvenation and renewal where feminized care is offered. These few individuals get to position themselves as debilitated patients but still exercise racialized power and exploit gendered caretakers from the global south. Fritsch (2015) presents a similar example where patients in India participated as research subjects for a biomedical study for
Western pharmaceutical companies, exposing themselves to life lasting damages for small economic remuneration. The conundrum of disability in neoliberal biocapitalism resides in the distinctions between capacity and debility (Puar, 2017).
H. Crip studies
McRuer´s book ¨Crip theory: Cultural signs of queerness and disability¨ (2018) describes key elements such as austerity, displacements, aspiration and forms of resistance, all rooted within disability. Therefore, the connection with crip, which the author asseverates has been used as a “marker of an in-your-face, or out-and-proud, cultural model of disability” (p. 19). This analysis gravitates around England, but also considers other scenarios, for example, Chile, Greece, California and Spain. Even though some of the social protests that are explored do not have explicit connection to disability, they use embodied messages as a way of protest. For instance, during demonstrations in
Madrid against austerity cuts, activists took almost all their clothes off as a way to demonstrate how the cuts were stripping them from what they had. By digging into the ways that austerity and disability are deeply interwoven is that the author gets to ‘crip austerity’.
23 Disabled people are positioned at the center of the struggle and resistance of austerity. As well, as utilized as an ableist promise of neoliberal representation (Goodley,
Lawthom, & Runswick-Cole, 2014). The movie ‘The King’s Speech’, analyzed by
McRuer (2018), is a clear example of this modus operandi, where the main character overcomes his speech stammering. Therefore, reinforcing what Young (2012) refers to as inspiration porn and stated: “I use the term porn deliberately, because they objectify one group of people for the benefit of another group of people. So, in this case, we’re objectifying disabled people for the benefit of nondisabled people. The purpose of these images is to inspire you, to motivate you, so that we can look at them and think, ‘Well, however bad my life is, it could be worse. I could be that person’.” (Young, 2014, p. 2)
Representing that disability is only worth celebrating, once it has been overcome.
There is a duality on the understanding of disability within neoliberal territory (McRuer,
2018). On the one hand, it appears as inspiration porn (Young, 2014) and applauded. On the other, it appears as a way to contest utilitarianism as a way of resistance. The 2012
London Olympic and Paralympic Games is a good example of how disability is contained within a representational matrix where slogans such as “Meet the Superhumans” were globally advertised, while at the same time, local protests against measurements to qualify disabled people as ‘fit to work’ were happening, without any media coverage.
McRuer (2018) presents a similar situation faced by the queer community, where being queer is only embraced when this identity is commodified. If this is not the case, then dispossession happens. There are, of course, modes of resistance, such as the visual campaign, “This is What Disability Looks Like,” that disidentified with inspirational porn (Young, 2014) by sharing pictures not usually conceived as related to disability.
24 McRuer (2018) insists that such social media campaign is a way to resist austerity, because it challenges precepts imposed by generated abjection. Other demonstrations against austerity that share a temporal common ground are the Arnieville protest in
California against massive cuts to disability benefits and the Chilean hunger strikes in protest of free education, where disability was more of an implicit aspect, only perceivable when examining details of the usage of wheel chairs and mouth masks.
Displacements that are a product of neoliberal policies have occurred in many places targeting disabled people and anticipating disability in others. McRuer (2018) describes two examples. The bedroom tax in the UK , and useless and publicly celebrated access ramps in Mexico. Disability is central to issues such as gentrification, earthquakes and the connection to austerity. Exploring the crip in Mexico and the UK allows for a comprehensible grasp of how the global North and South may cohabit in the same geographic spaces. Understanding this “figuration of disability has been one of the key discursive building block of neoliberalism” (McRuer, 2018, p. 177) as demonstrated in
UK political aspiration discourses referring to letting the ‘children grow tall’ or the need to grow out from a ‘Broken of Britain’.
I. Coming to claim crip
Schalk (2013) describes the term “crip” as an invitation to disidentify from previous identity labels, to find new identifications and to create a category for the marginalized in already marginalized groups. “Crip” is understood as a result of politics of solidarity, inspired by this definition of solidarity. Mohanty (2003a) stated:
“In terms of mutuality, accountability, and the recognition of common interests as the basis for relationships among diverse communities…who have chosen to work and fight
25 together. Diversity and difference are central values here—to be acknowledged and respected, not erased in the building of alliances” (p. 7).
Coalitional theory is referred to minoritarian subjects who confront common struggles, particularly around race, ethnic, sexual or queer identities Schalk (2013).
Building alliances based on diversity and difference is central to “crip”, which innovates disability studies. Muñoz (1999) introduces the concept disidentification as a political, resistance and survival strategy, whereby marginal identities collide and open a new layer in the established power dynamics between resistance and conformity in relation to dominant ideology. Ferguson (2004) rejects any inherited homophobia, racism, or sexism from previous theories and scholarship developed to underpin disidentification processes.
Similarly, other academics who have studied intersectionality have advocated to explain how minority subjects may resist against some hegemonic ideologies assuming certain particular identities, while at the same time enforcing other hegemonic ideologies when assuming a different identity (Crenshaw, 1990; Duggan, 2002; Puar, 2018). An important emphasis to differentiate between disidentification and identifying with is made. As the latter does not solely mean to become an ally for a marginalized group of people but, instead, to acknowledge a strong connection with a particular group of people, even though there are specific differences between the individual and the group characteristics. Kafer (2013) argues that the term “crip” is inclusive to sensory and mental impairments. Acknowledging the word as a verb, “cripping”, represents exposing exerted injustice between what is consider normal and the defective rest, who need to be cured, through medical gaze.
26 Systems of oppression and privilege produce pejorative concepts such as queer and “crip,” which are then taken by activists to be used as empowerment identities. These are so inclusive that delimitation between what is queer and what is “crip” might be erased or confused with one another. Fatness is introduced to understand what crip means, or at least what is the common experience between disability and being fat, both underpinned in a non—normative existence. None of the identities has social nor medical definitions. Also, both have experienced microaggressions, environment limitations,
“erotic segregation” (Rainey, 2011) and medicalization. Crip sexualities (Santinele
Martino, 2017) is an intersection of struggle against ableism, sexism, homophobia, and other power dynamics.
J. Mad studies
“Mad Studies” (LeFrançois, Menzies, & Reaume, 2013) inquire the oppression and the discourse mechanisms used to abnegate “Mad” people. The academic literature developed in Canada has been accompanied by radical activists’ actions of resistance. As early as 1981, Starkman (2013) proposed the creation of an alternative community, opposed to the psychiatric domination intrinsic in the capitalist system. Following this idea, “Mad Studies” is an invitation to understand the political identity of people who have been pathologized as “Mad” and anyone who rejects marginalization of people using medical prognostications as an excuse to do so. Canadian critical Mad Studies are subscribed in the human rights movement as an academic and activist pursue of political debate to express our humanity freely.
Between the 1960’s and the 1970’s the Mad movement emerged as a response to the violent therapeutic discourse developed amidst liberal democracies in the world
27 (LeFrançois et al., 2013). Radical psychiatrists coined the term “politics of experience” advocating for a humanizing motif to understand madness (Basaglia, 1971; Laing, 1990).
At the same time global north activists started social movements such as “c/s/x”
(consumer/survivor/x-patient), Mental Patients Association (MPA), and “service user” movement. Besides, feminist academics demonstrated how male normativity is intrinsic to psychiatrization processes (LeFrançois et al., 2013). During the 1980’s and the 1990’s the medical model gained popularity. Due to corporate drug pushers who financed scholarship to support the incorporation of diagnostic labelling of a variety of psychotic disorders, including children as a new social subject who need to be treated by psychiatry
(Illich, 2003). Recent years have witnessed the globalization of psychiatry and the Mad movement (LeFrançois et al., 2013).
K. Ableism
Ableism (Campbell, 2009) is presented as a new paradigm to understand how disability is produced. It constitutes a binary relation between a determined imaginary of what a healthy, whole and fully human is contrasted to a different, incomplete, and inherited negative imaginary of a disabled human. The division between abledness and disabledness is at the core of this paradigm, which determines our beingness in the world, as well as beliefs of how humans should be. Ableism creates a truth that depends on the internalized idea of “real” human attributes, such as autonomy, certainty and mastery.
One of the mechanisms to assure that a capsuled confine of abledness is perpetuated is by appealing to a sense of solidarity and political correctness and by incorporating a principle of social inclusion. The discourse of inclusion places disability as inherently negative. Meaning that it can at most, be tolerated, not only by society but also by those
28 who supposedly carry that burden. So, the success disabled people might have will be despite their impairment, never only success by itself.
The definition for ableism that Campbell provides is the following:
“A network of beliefs, processes and practices that produce a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical and therefore essential and fully human. Disability, then, is cast as a diminished state of being human” (Campbell, 2001, p. 44).
It may seem, from this definition, that disability is not at the center of the network of practices, processes and beliefs. However, every attempt to address normalcy and humanness will consider disability in its very construction, even when it is not mentioned. Disability confers validity to normality.
Ableism, just as racism, is a social construction. The difference between these two is that internalized ableist oppression is still accepted and mostly not even recognized.
One of the reasons is that there is not much discussion about the ways in which disability is conceived. Person first language is an example of how disability is left behind in importance, placing the matter of personhood as the relevant one. Campbell (2009) recognizes that internal ableism is constructed, due to tactics of dispersal and emulation of the norm. The first one has to do with restricted opportunities for the disabled community to identify a collective identity, also, similar to other oppressed populations, there is a widespread thought about the negativity that implies to mix with other deviant subjects. The second one has to do with replicating the hegemonic norm, thus legitimizing the dominant’s group imposition, by naturalizing a devalued identity.
Coming back to the person first language example, we can see that the attempt is to find a
29 similitude to able-bodiedness. There is a moral mandate to look into what makes us similar, instead of appreciating our differences.
Internal ableism (Campbell, 2009) consists in a perpetual accepting of disability, only through the pursuit of normality by a desire to achieve a state of near- ablebodiedness. This phenomenon has been called ‘passing’, which is born from compulsory abledness presumptions, which determine that the more one hides its impairment, the less awkward the social relation will be. A way to dissimulate the impairment by recreating normalcy is by using new technologies, which at the end, promote ableism. It is this kind of ambivalences that disabled people confront, accepting their existence, while disavowing disability, and in some cases separating it from the self.
Negative association to disability is the foundation for ableism. Therefore, an obligation for scholars is to change this negative notion by sharing and looking into stories that portray realization and success because of disability.
A way in which disability is classified is by means of the law. However, legal formulations ignore contextual focus by intending to provide a scale in order to measure the percentage of disablement that a person has (Campbell, 2005). Assuming and reinforcing that the more disabled one is, the furthest away from being a productive citizen (Campbell, 2009). Situating disability as a damage for the nation creates not only a “culture of blame” but also, the legal right to reclaim for compensation (Brown, 1993).
The state has a duty to assess the damaged body and to mitigate impairment in an attempt to save the person from future suffering. Legal assumptions of disability position the disabled person as unfortunate and needing of protection, as well as desperate to achieve a normalcy state (Campbell, 2008). As result of this uncertainty about a clear legal
30 position on disability is that cases of wrongful birth and wrongful life have happened, where disabled people or their parents sue the doctor for negligence on allowing the baby to be born (Campbell, 2009).
Technology intervenes as a manner to ‘fix’ what is wrong with the disabled body, creating hybrids, cyborgs or monsters (Campbell, 2009). This intervention provides the disabled body with a transformed self, a transmogrified self. Meaning that certain technologies are no longer a separated machine from the person who utilizes them, but somehow, a new part of this human. This brings into question the limits of being human.
Cochlear implants for deaf people are the promise for a disabled life that is always waiting for an improvement. There is a whole economic industry that manages these surgeries. The international power relationship in this sense is a clear example of imbalance as there are only a couple industries that manufacture these implants based in the USA and Australia. These industries base their profits on ‘curing’ deafness by creating the perception of sound and, by doing so, they transform the disabled humans into productive citizens. This is the ableist essence, specifically the idea that a disabled person is always looking into ways to be normal and that any cost is worth the try to become standard, even if the medical procedure fails. However, Deaf people who appreciate and legitimize Deaf culture have presented this technology as invasive to establish their social norms. Ableism excludes any other way of being that is not how homogenous productive citizens live.
The continuum of illness and health is molded by hegemonic biomedicalist epistemologies. It is the doctor who has the final say in the life of the impaired person, and their disability is internalized by ignoring the agency and knowledge of the patient.
31 Through the analysis of the case of Clint Hallam, Campbell (2009) looks into the depiction of narratives of disability as tragedy in print media. In this case, the patient underwent a hand transplant surgery that ended up having to be removed, due to strong health discomforts and economic hazards. Newspapers portray the patient as ungrateful and mostly only present the biomedical perspectives, as well as refer to his criminal records to classify him as deviant. The optimism of technology as a savior of disability is the focus of print media.
Femaleness through an ableist analysis will look into incompleteness and disorder
(Campbell, 2009; Lunbeck, 1996). Pregnancy and menstruation are pathologized and portrayed as monstrous (Ussher, 2006). Pregnant women share a status of weakened subjects with disabled people. Discussions over framing pregnancy as a disability when it comes to parking spaces have been found to have ableist views, rejecting disability. Other similarities like pre-menstrual syndrome and disability have been compared, only to evidence how processes of normalization are gendered and within the disability realm
(Halbreich, 2006). Campbell (2009) presents cases of devoteeism, conjointment and transableism as examples of ways of living that resist ableist constructions. These spaces allow the creation of alternative formulations between desire and disability, as well as masculinity and femininity.
Goodley (2014) establishes ableism as the logic that perpetuates oppression and dependence from neoliberalism. Critical ableist studies are a necessity to understand the world we are living in as this tendency to maintain the general idea of an autonomous, rational and healthy citizen is underpinning medicine and law fields. Ableism does not only affect the relationship of oneself with the people and the environment that surrounds
32 one, but, most importantly, it affects the understanding and acceptance of oneself
(Internalized ableism). These categories of disabled people, women, children, queer people, people of color and poor people are portrayed as the Other because these identities are not the same as the dominant one.
A great contribution made by Goodley (2014) is how transhumanism pursues the improvement of the normal. This search for better bodies, brains and lives urges people to wonder “where do we draw the line between making lives more healthy than poorly?”
(2014, p. 26). It is not difficult to find the link between capitalism and transhumanism, as the last one becomes simply another way of consumption through molecular nanotechnology and medical drugs.
Neoliberal-ableism is defined by Goodley (2014) as the privatization of ableism within the ecosystem provided by neoliberalism. This ecosystem is based on values, such as individual merit and hard work, that are incorporated in global education systems, phenomena that is of the interest of pan/national corporations. Under this circumstances human and market development are pretty much the same thing. Both can equally use able bodied and minded individuals, without considering the human aspect. The capitalization of the flesh is possible due to several elements, including the following:
The abled-bodied that fits in neoliberal expectative must be an entrepreneurial entity that competes within a system of meritocracy; To enhance productivity the able-bodied requires constant updating and replenishment to keep up; Ableist practices respond to the requirements of global capitalism; To be recognized as a citizen, one must be rational, competent and autonomist. One’s success is measured in terms of value for money.
L. The ability contract
33 Day (2014) identifies that the “processes of negotiation of labor in relation to disability identity by exploring the experience of women living with HIV.” (p. 120) This identification is embedded in, what the author presents as, the Ability Contract, which is a way to recognize how is dis/ability constructed through Social Contract theory. Day
(2014) explores how women living with HIV negotiate their disabled identity by using it when benefits are a part of this identity, but renouncing it when demonstrating they can still contribute to the labor force. By only taking disability as a temporal form of assistance, these women take part on a differential identification, a concept that is built upon a differential consciousness, that “re-cognizes and works upon other modes of consciousness in opposition to transfigure their meanings: they convert into repositories within which subjugated citizens either occupy or throw off subjectivity, a process that simultaneously enacts yet decolonizes their various relations to their real conditions of existence.” (Sandoval, 2013, p. 62)
Day (2014) argues that a disability and differential consciousness are the same within the Ability Contract. A predictable production is a main foundation in the construction of the liberal subject, as well as labor and utility. The fact that people experiencing HIV cannot provide predictable labor is the reason they are situated outside the delimitations of the social contract. This social identity anomaly skirmishes the
Ability Contract and calls for other further understandings outside the social contract.
M. Disability activism
Disability activism is at the core of the struggle against oppression and discrimination (Pearson & Trevisan, 2015). Case studies in Ireland and Ontario (Kitchin
& Wilton, 2003) unveiled the importance of politics of scale while practicing disability
34 activism. Actions and networking will be different at a local, regional or national level.
For instance, Oliver (1997a) attributes the increase of disability organizations during the
1960´s to inequity affecting disabled people in Britain. Stark contrasts between a booming economy and the realities of disabled people fomented social organization for a national disability income provided by the government. Lewis (2006) finds similarities between disability activism and the Mad Pride movement, which advocates for the consumers of mental health services and psychiatric survivors. Such similarities include a shared political and epistemological struggle.
Garland-Thomson (2002) identifies that “the final domain of feminist theory that a disability analysis expands is activism.” (p. 348). In fact, she proposes a “feminist academic activism”, focused on a methodology of intellectual tolerance. Such methodology acknowledges provisional answers as valid, and tolerates contradictions and limitations, as well challenges normalcy systems such as gender, race, sexuality, and class. Similarly, Wendell (2001) argues that chronic illness is fundamental for feminist understandings of disability activism, given that it especially affects women. The close relation between disability and illness has important implications. For instance,
“Because disability activists have worked hard to resist medicalization and promote the social model of disability, activists sometimes feel pressured to downplay the realities of fluctuating impairment or ill health.” (Wendell, 2001, p. 165)
Another fundamental element to disability activism is identity politics. Davis
(2006) recognizes that the category of disability is “a subset of the instability of identity in a postmodern era.” (p. 272). Therefore, presents a possibility to understand the human body and identity as fluid concepts.
35 Shakespeare (2006) proposes that the British social model of disability has effectively shaped a powerful disability activist movement in Britain. Mainly because it has a politically clear agenda, as it is “distinguishing allies from enemies” (p. 217) through terminology. Such distinction relies on a social model approach that embraces the term “disabled people”, confronted to a mainstream approach that uses the term
“people with disabilities”.
N. Transnational feminism
Transnational feminism is an emerging field of studies, as well as a methodology that has grown since the 1990’s (Herr, 2014). It is informed by large concepts such as globalization and colonialism inside the broad feminist scholarship (Mendoza, 2002;
Thayer, 2001). It looks at different forms of feminisms that occur around the globe considering major economic and political forces, and it deals with global south-north relations placing the oppressed subjects as the most important (Desai, 2007). “The focus on the transnational in feminist research aims to decentre Western epistemologies”
(Hundle, 2019, p. 3). Decentering feminist European or US focused research that are in
English language allows to reveal nationalist and heteropatriarchal ideologies that have been taken for granted. In this way, a new door for plural feminist thoughts is open for activist and intellectual projects.
An important aspect that is addressed as part of the critical knowledge making in transnational feminism perspective that has been developed at the core of dialogue exchanges regarding gender and sexuality, considering how these aspects complicate identities embedded in legacies and histories of imperialism and colonialism, as well nation state projects within neoliberalism. (Patil, 2011). Even though the focus of this
36 emerging academic field is feminist research outside the traditional global north settings, much of its origins, history, development and major theoreticians are US academic feminist scholars. Therefore, English language is a medium of transnational feminist exchange and, at the same time, it reproduces English hegemony. This “also risks overwriting meanings and homogenising otherwise diverse culturally and linguistically specific feminist thought.” (Lunny, 2019, p. 70). Something similar happens with the translation of human rights, specifically involved actors in the ‘cultural translation’ see themselves in dealing with two different positions. Merry (2006) stated, for example:
“On the one hand, they have to speak the language of international human rights preferred by international donors to get funds and global media attention. On the other hand, they have to present their initiatives in cultural terms that will be acceptable to at least some of the local community” (p. 42).
Two founding texts for the field are Scattered hegemonies: Postmodernity and transnational feminist practices by Grewal and Kaplan (1994) and Questions of travel:
Postmodern discourses of displacement by Kaplan (1996). These readings explore the intersections between feminism, coloniality and the hybridity between postcolonial and modernist understandings. Their findings represent an epistemological break as it reveals a liminal space amid feminisms of color and mainstream US feminisms and questions problematic international, multicultural and global notions. It is in this academic void that transnational feminism finds its place as an “inherently border—crossing story, which self—consciously attempts to traverse divides of cultures, nations, states, scales of analysis and academia and activism” (Patil, 2011, p. 540).
37 An essential part of transnational feminism is the recognition of in—between spaces and identities. This is indispensable in the process of decolonizing, which seeks to represents complex, fragmented, hybrid identities as coherent. Postmodernity in feminism offer the notion of deconstruction, which can be used to analyze the kind of monolithic modernity that demands allegiance and denies the generation of emancipatory politics and agency, for example nationalist ideologies and historical materialism. Postmodernism influences transnational feminisms because it calls to de—emphasize dominant identity—based studies, meaning that is does not take identities for grounded because
“women are workers, mothers, or consumers in the global economy, but we are also all those things simultaneously. Singular and monolithic categorizations of women in discourses of globalization circumscribe ideas about experience, agency, and struggle”
(Mohanty, 2003b, p. 528). Instead, postmodernism opens a field of feminist studies that identify, explore, and theorize unprecedented intersectionalities, scattered hegemonies, multiple identities embedded in the global capitalist system.
O. Global feminisms
Institutional global feminist struggles are supported by various international agreements and treaties such as the 1979 Convention on the Elimination of All Forms of
Discrimination against Women, the 1995 United Nations Beijing Platform of Action, the
1996 International Labour Organization Convention for Homeworkers, the 2000 UN
Security Council Resolution 1325 on the Participation of women in peace—building, and the creation of UN Women in 2010, an entity Gender Equality and the Empowerment of
Women. Its 2017-2018 report focuses on political engagement, economic empowerment, violence against women and girls, recovery from crisis and mobilizing for better budgets.
38 Also, it promotes various hashtags as part of cyber activist campaigns like #TIMESUP
#MeToo #WithYou #NiUnaMenos #TimeIsNow #WomenShould #EverydaySexism, and many more in other languages.
The feminist agenda that is deployed from UN Women to the regional offices and then to the country offices is set based on the global budget that is allocated from government donors, who need to approve the projects that will globally be done. It seems that political motives can guide the decisions for this global agenda. However, Tripp
(2006) argues that despite the fact that most people believe that women’s emancipation ideas come from the West outward into the rest of the world, consensus is a product of parallel feminist movements that are independent and that have multi—directionally influenced each other. In fact, Tripp (2006) recognized three waves of transnational mobilization. The first one between 1880 and 1930, where issues of peace, suffrage, education, labor and social welfare occurred not only in Geneva, as most people identify, but also in Japan, China, India, Chile, Britain, Korea, Burma, New Zealand, Australia,
Ecuador, Sri Lanka, Senegal, Peru, Paraguay, and Argentina.
A second wave of transnational mobilization happened between 1945 and 1975
“in efforts to secure independence for their countries and resist colonialism”(Tripp, 2006, p. 59). Women’s movements worldwide started to form regional alliances such as the
African women’s movement, similar examples happened in Asia, Latin America, the
Middle East where local struggles were faced from feminisms different from western feminisms. It is during this wave that Tripp suggests that a shift in geopolitical realignment started to happen inside the UN structure and dynamics by recognizing and legitimizing global South voices. The start of a third wave is identified in the year 1985
39 when new international networks were built and tension between the global North and
South started to increase, due to funding coming mostly from Europe and North America.
Global feminisms are not completely opposed to transnational feminisms as the latter influences vertical structures frequently present in global feminism.
It is a field’s task to identify different kinds of feminisms, but also to differentiate global, international or universal models that are part of a colonial project, which follows processes of ‘othering’ (Bhattacharya, 2009), ‘speaking for’ or ‘translating’(Lunny,
2019), and ‘Orientalizing’ (E. Said, 2008). These types of representations perpetuate the idea of the west consuming the east, exercising oppression and distortion of political agency, opposition and resistance. Feminisms labeled as global or international prioritize the western women’s liberation as an ahistorical universal model that is then located in the imaginary picture of the ‘third world country women’. Some issues that emerge from this representation problem are hybridity regarding sexual, epistemological, citizenships and subjectivities, arbitrarily borders drawn, the lack of consideration of migrating bodies, and peripheral or marginal positionalities.
Creating binary oppositions between liberator discourses from the West that are often present in the practices of global feminisms and de/colonizing research as a source for transnational feminism is not encouraged. However, it is useful to remember that
“Transnational feminism disrupts the liberatory goals of feminist research where the researcher is motivated to free people from oppressive social structures by questioning the ways in which discourses of oppression, liberation, and resistance privilege Anglo-
Euro-American worldviews. Instead, transnational feminism calls for underscoring the problem of voices that can never be heard in their entirety, the situational and contextual
40 nature of experiences, and the reflexivity that is embedded in multiple power relations.”
(Bhattacharya, 2009, p. 109)
Global feminisms respond to neoliberal intellectual culture. Mohanty (2013) warns that radical theory might become a commodity meant for consumption, losing its connection to emancipatory knowledge and activist scholarship, and becoming a sign of elitist intellectual prestige. Issues on the representation of the ‘third world women’
Under western eyes were raised by Mohanty (1988). She identifies women as a category of analysis that is depicted as a homogenous group that have the same struggles such as suffering of male violence, as universal dependents, as victims of the colonial process, familial systems, religious ideologies, and development process. These kinds of assumptions lead to methodological universalisms that ignore context-specific differentiated analysis and offer an understanding of women’s oppression as a global phenomenon.
Feminist scholarship has an inherent political commitment that is left apart when the ‘third world country women’ picture is made out of molds that situate this subject as people without agency. Therefore, Mohanty (1988) proposes to embrace the dismantling of hegemonic ‘western’ feminisms and to formulate autonomous feminist concerns that are geographically, historically and culturally grounded. She argues that the One-
Third/Two-Thirds paradigm makes sense. According to Mohanty (2003b),
“Rather than Western/Third World, or North/South, or local/ global seen as oppositional and incommensurate categories, the One-Third/ Two-Thirds differentiation allows for teaching and learning about points of connection and distance among and between
41 communities of women marginalized and privileged along numerous local and global dimensions” (p. 522).
However, Torres (2018) proposes to understand the global south not only as a geographic reference but also as an epistemological and symbolic reference that has been traversed by the traumatic experience of colonialism, it allows for the understanding of shared experiences of women when talking about their struggles. Both paradigms contribute greatly to the incorporation of power dynamics to previous world dualistic views such as the world system model (Wallerstein, 1974) or developed and developing countries (Matland, 1998).
A seminal text that provides important insights to the foundations of transnational feminism is Spivak (1988), Can the subaltern speak, where she concludes by answering this question saying that the subaltern cannot speak. Hegemonic meaning layers are imposed upon the subaltern subject. However, colonial decipherment may read through silences and complicity. Both articles by Mohanty (1988) and Spivak (1988) provide clear guidelines for transnational feminism, as they are an invitation to test if feminist knowledges are reproducing epistemological structures of imperialism. The roots of this methodology and study field is an ongoing questioning on how the third world is being represented. By whom? What are the power relations that allow this representation? It is only by frequently asking these questions regarding research that knowledge production can be positioned as a site of specific dissemination.
The concept of postcoloniality is problematic, because it suggests that history is linear and that time has led to a point oppositional to colonialism, as if humanity had overcome and almost forgotten about historical abuses (Mendoza, 2002). Besides, the
42 persistence of neo—colonial regimes such as corporate capitalism, globalization processes, cultural imperialism, conditional humanitarian aid and war, military interventions and revivalist nationalisms are still present around the globe. These are dependencies and dominations mechanisms that are working and affecting ontological and epistemological feminist understandings such as issues of representation, subjecthood and subjectivity formation. Thus, the production of knowledge must be unpacked, de— centered from hegemonic colonial or post—colonial notions that homogenizes subjects
(Jamal, 2005).
Some of the concepts that are important for the field are “third world”, which must be analyzed critically, specially the questions of who belongs there? Why? Is it a space or an idea? How is it represented? And what is its connection is to colonialism and capitalism is at the core of the scrutiny of transnational feminism. The use of the term
‘Third world’ is a colonizing move that works for the sake of effective administration of aid as it homogenizes subjects and creates dependency of ‘developing’ on ‘developed’ countries through colonization and institutionalized slave labor. This category of ‘Third world’ women creates oblivion and disconnection (Narayan, 2004). Another important element that is present in the transnational feminism perspective is anticapitalist critique because women’s bodies and labor are contested territories of exploitation.
“Beginning from the social location of poor women of color of the Two-Thirds World is an important, even crucial, place for feminist analysis; it is precisely the potential epistemic privilege of these communities of women that opens up the space for demystifying capitalism and for envisioning transborder social and economic justice.”
(Mohanty, 2003b, p. 529)
43 A diversity of connections despite structural differences such as class, work, beliefs, identity, etc. amongst feminist solidarities are brought closer. This is one of the scenarios that is possible in the context of global capitalism. “Successful feminist coalitions across racial, ethnic, religious, linguistic, ideological and other borders, based on principles of co-relations, are always in the making” (Tlostanova, Thapar-Björkert, &
Koobak, 2019, p. 85).
Special attention is given to migration because “in many instances migrant women face a triple discrimination due to their simultaneous gender, ethnicity and minority migrant status” (Pio & Essers, 2014, p. 252). Women who migrate to wealthy countries may work as domestic workers, nurses, nannies, or are trafficked as sex slaves
(Capous Desyllas, 2007) or sex workers (Hua & Nigorizawa, 2010). Such is the example of the ‘Russian brides’ (Suchland, 2015). Some elements to be considered are race, ethnicity, gender, class, location, and even size as all of these shape their complex identities and experiences. Identity is analyzed taking into account that it is intersectional, unstable, fragmented, historical and local.
P. Grassroot Activism
Activism and women’s movements are also central for the construction of transnational feminism, as they are recognized as knowledge producers. Lunny (2019) acknowledges that grassroot feminist newsletters are an excellent informant for research that considers local political agendas as she analyzed those in a feminist Japan—based organization discovering how the “translation of feminist activist thought—reading, interpreting, summarising, translating and editing—are forms of linguistic and intellectual labour through which feminist ideas can travel transnationally” (p. 66).
44 There are also other ways to inform on similarities and differences between local and global feminist frameworks, for example, “in terms of Ugandan gender-based activism, global feminist frameworks emanating from international institutions continue to dominate the public sphere” (Hundle 2019:48). Academic feminism considers global and local grassroot activism as an essential element because it focuses on correcting epistemic injustices as the ones identified in women’s studies such as identity, representation and economic development as well as women’s empowerment.
There are many examples that demonstrate the inseparable bond between activism and transnational feminism. Chowdhury (2005) provides a very detailed explanation on contesting narratives of the campaign against acid violence in Bangladesh. She has advocated as a grassroot activist with attack victims for several years. Her article reflects on how foreign institutions such as Canadian International Development Agency (CIDA) and the United Nations Children's Fund, UNICEF-Bangladesh, which were established in
1999 through the funding and support of Acid Survivors Foundation (ASF), intervene and affect local activism processes. According to Chowdhurdy (2005), “The self- validating progress narrative of the ASF does not allow for women to be seen as complex subjects in agency and in struggle. Under the rhetoric of service for victimized women, the ASF's programs promise that rehabilitation will promote reintegration for acid survivors; clerical jobs will be conducive to their becoming "productive citizens," and thus these women will enhance the society as a whole” (p. 188).
Another transnational feminist case study that is founded on the knowledge extracted from a social movement is the example of the Slutwalk movement (Carr, 2013).
This transnational movement took place in over 200 cities in at least 40 countries.
45 Locations included Spain, Hungary, Finland, Norway, South Korea, South Africa,
Australia, Ukraine, Mexico, Brazil, India, Indonesia, Germany, Morocco, England, and
Canada, among others in the global South and global North. This innovative form of protest was locally organized in each different setting with independent characteristics.
However, the one thing that was shared, respecting all contextual particularities, was that the parody of the slut “pierced the hold that rape cultures have on societies, turning the objectification of women on its head” (Carr, 2013, p. 25).
Q. Women’s studies
Transnational feminism differentiates from women’s studies, even though both fields have much in common. Women’s studies have roots in the fields of philosophy, sociology, history, and comparative literature. Transnational feminism also stems from the fields of literary and social theory, sociology and anthropology and political science and philosophy. Feminist epistemology is a subset of social epistemology (Goldman &
Whitcomb, 2011) that studies social and political dimensions of knowledge as part of the sociology of knowledge (Berger & Luckmann, 1991). Contemporary feminist epistemology, as a result of the postmodern turn (Seidman, 1994) recognizes the existence of feminist epistemologies, which reconfigure borders of epistemology, political philosophy and ethics, distinguishing their interrelated inseparability.
Transnational feminism is a movement towards ethical, accountable, non—hierarchical scholarship that acknowledges more than one nation as part of the feminist research production localities.
Transnational feminist academics are mostly located in the US and are part of a diaspora, which situates them in a liminal position. This can be easily compared to the
46 mestizo experience (Anzaldúa, 1987b), which manages a dual consciousness that is the source of knowledge and activism as it faces a diverse multiethnic religious, geopolitical understandings. Women’s issues, social movements, and resistances are considered global and locally, as well as gender roles, and gender performances. The gender question is understood as a topic immersed in neoliberalism and neocolonialism dynamics.
R. Latin American feminisms
The Latin American feminist field is increasingly growing broader and more heterogenous (Álvarez, 1998). There are several actresses that contribute to the field such as social scientists, activists, NGO workers, and even state workers. Therefore, a multitude of different feminisms co-exist in Latin America. Latin American women recognize themselves through colonial processes, even though these processes are not fully addressed. Gargallo (2007) explains that the major conflict in Latin American history is to ignore the committed genocide that killed ninety percent of the indigenous population at the beginning of the Westernization of its history. Therefore, decolonizing theories to address feminism in Latin America are paramount to investigate the direct connection of colonization to women’s economy, bodies, politics, liberation and difference. According to Ramírez (2004), analyzing Latin America’s reality implies doing it from all marginal places of the global empire.
"The women who participate in the Zapatista movement in Mexico, the coca growers (cocaleras) in Bolivia, the Amazon and Andean indigenous peoples of Ecuador and Venezuela are denouncing the relationship between colonialism, racism and economic inequalities, of opportunities and of access to public services that marginalize them.” (Gargallo, 2007, p. 20)
47 According to Calveiro (2005) there is an urgency amongst women and indigenous communities to deconstruct our past, to remember indigenous roots, as well as to reclaim a denied history. Thus, the resistance and submission dynamics that are present in historical moments full of violence such as dictatorships during the 70’s decade. This revision of the past to guide the present into a future time is similar to a sociological view that Silvia Rivera Cusicanqui (2019) proposes. “Quipnayra”, an Aymara notion of what
Benjamin (1999) had expressed as an image politics dialectic means that past history is understood as a possible future, so that the present is a time when past and future are happening simultaneously. This is important for sociological analysis because it provides a mechanism to study phenomena revising historical horizons to understand it.
Those that could be considered reminiscences of the colonial period remain alive in the social imaginary and acquire new forms and functions. The colonial root in feminist struggles in Latin America shapes inequality relations regarding race, gender, spoken language, religion and others. Carneiro, Costa, and Santos (1985) explore how black women have been ignored and rejected as part of the formation of nations in Latin
America, as well as how sexual violence against black Latin American women has been romanticized. They stated,
The colonial rape perpetrated by the white lords on indigenous and black women and the resulting mix is in the origin of all the constructions of our national identity, structuring the decanted myth of Latin American racial democracy, which in Brazil reached its last consequences. That colonial sexual violence is also the foundation of all gender and race hierarchies present in our societies… (p. 21).
48 Such “colonial wound” (Mignolo, 2007) is paramount for the understanding of
Latin American feminisms. As a result, one of the main characteristics of Latin American feminisms is the struggle for women to free ourselves from the perspective of western cultural universalism, and its deterministic construction. The dichotomic organization of sexual genres legitimates a hierarchical nature where women's free labor rests in an invariable cultural nature. Gargallo (2007) finds that there is a separation between white, mestizas feminism, and indigenous, resistant feminism, which is growing bigger in the region. Recurrent themes of these feminisms, such as economic discrimination, social margination, exclusion from formal education and health systems, are central in the current feminist theory.
Femenías (2007) proposes that it is necessary to identify certain elements to define a Latin American feminism. These elements include the analysis of the geographic territory, and acknowledging that the Western identify us, Latin Americans, as the
“Other”. Location politics are fundamental for the development of feminist theory, collective action, and negotiated identities. Such mixed identities constitute the failed project of mestizaje citizenship, which portrays impurity that resides in Latin American women, who are embedded in a triple recognition/negation of white, indigenous and black (Mendoza, 2010). Chicana authors such as Anzaldúa (1987a), Moraga (1997),
Alarcón (1989), Pérez (1999), Sandoval (1991) have demonstrated a potential “Latin
American” feminism. However, they are mediated by language. English, Spanish and
Nahuatl are tainted by the migration patterns that cannot portray the experiences of women who stay in the South. Therefore, Mendoza (2010) remarks the necessary
49 difference between Chicana and Latin American feminisms, making an emphasis on appealing for southern epistemology rights.
Decolonial studies (Dussel, 1973; Escobar, 2007; Mignolo, 2003; Quijano, 1999) overlap with Latin American feminisms, or as Bard Wigdor and Artazo (2017) call it
“our America” feminisms. To do so, it is essential to debunk our past. Silvia Rivera
Cusicanqui (1984) proposes to explore the Latin American genesis with two types of memories; short-term memory and long-term memory cycles. These mechanisms allow identification of colonial practices that are common in our societies. Pisano (2001) finds that one of the obstacles that the Latin American feminisms face is that the accumulated knowledges from women from subaltern contexts have not been systematically reflected by the academia. Instead, Calveiro (2005) insists on white feminists to reject the
“feminine fragility discourse,” which means that women are weaker than men, especially given that such myth was never granted to black and indigenous women, who were never considered with such protection.
S. Bolivian feminisms
Aillón (2015) outlines that the first issue when addressing Bolivian feminisms is its asynchrony with the global feminist historiography. The foundation of a global recognized feminist debate is entrenched in the European enlightenment period (Clinton,
1975). Following that traditional timeline, Álvarez Giménez (2011) explores, what she refers to as “the first feminist movement in Bolivia” and the role it played in the demands for female suffrage since the 1920's, until the proclamation of the universal suffrage under the National Revolution of 1952. However, women protagonists existed way before the recognized global feminist waives.
50 For instance, women´s leadership during the colony was crucial for Bolivian history. “Women were not only commanders, generals and soldiers, but also creators of ideology, both in their performance and in discourse” (Ari, 2017, p. 68). Women, such as
Bartolina Sisa, are central to the Katarista indigenous movements. For instance, her participation during indigenous rebellions inspired indigenous theory. When she was captured by the Spanish colonizers, who asked about her motivation to lead such a rebellion, she answered: “para que extinguida la cara blanca sólo reinasen los indios” “So that when the white face is extinguished, only would the indigenous rule” (de Siles, 1990, p. 249). Such powerful and clear message inspired Thomson and Cusicanqui (2007) to continue research on the Amarista and Katarista rebellions. Still, women are not included in the general social analysis. Equivalent to Quispe (1990) research on the Katarist rebellions, where the experiences of women are analyzed as separate from the main examination.
Another issue to consider about the development of feminism in Bolivia is its relationship with "the indigenous" issue (Aillón, 2015). This conflictive relationship is especially notorious between 1920 and the nationalist revolution in 1952. During this period two feminist movements developed their agendas in different contexts. First, as already explained the suffragists started organizing themselves through feminine
“Cultural Centers”, where women from middle and high class cultivated conversation and debate around arts and intellectual production, as well as political affairs, such as civil rights (Álvarez Giménez, 2011). Educated women as Laura De la Rosa, Bethsabé Salmón de Beltrán and Nelly López, published the magazine Feminiflor (the first magazine of
51 this type to be published in 1921). During the same time period, indigenous “cholas” women organized themselves through labor unions.
García (2011) explores the anarchic-syndicalist roots of the Culinary Labor
Union, as well as the Federation of Female Workers (Federación de Obreras Femeninas).
These organizations worked for social demands such as eight hour shifts a day, laws to protect women and children at work, etc. Disagreements between the two feminist movements resulted in the unionists withdrawing from the first Feminine Convention in
1929 before it ended. Although both movements contributed to the women’s access to rights and protections, the second one has been slightly ignored by the official history.
Anarchic-syndicalist “cholas” addressed topics that are currently being revised by contemporary feminist movements such as body politics (Bordo, 2001; Kubissa, 2015;
Lamas, 1994), feminist solidarity (Rodríguez Martínez, 2010). As well as practices of free love and combativity (García, 2011).
Similarly, pre-colonial data regarding women’s political and social involvement is not considered when addressing Bolivian feminisms. The Inka ancestral women were paramount in the emergence, consolidation and ideological authentication of early prehistoric empires (Alconini, 2003). Another example of how indigenous women are ignored in feminist narratives is the group of unnamed indigenous women who participated in the rebellions during the colony. Indigenous women played a vital role during this period. They were the main providers of family food. Ari (2017) noted that
“it would seem that history has made these women simple companions or followers of an ideology elaborated by Katarist men, when in reality some of them posed more clearly a
52 future path that included an Indian political program, solidarity between women and a understanding of what should be ‒And was not‒ the chacha-warmi” (p. 92)
Parallel histories of Bolivian feminisms seemed to be divided by class and ethnic difference. However, contemporary feminisms place such divisions at the center of their analysis. For instance, communitarian feminism (Paredes, 2010b) seek a coexistence regime in Bolivia, guided by a policy of inclusive affection of nonhumans, such as the
Andean Pachamama and the jungle spirits of indigenous of the lowlands (Schavelzon,
2016). Such collaborative understanding is clear for, “Mujeres Creando” (Women
Creating), the most important feminist organization in Bolivia. Galindo (2018) highlights the heterogenous aspect of the organization:
We are indigenous, whores and lesbians together, mixed and sistered. This means
that our organization begins by breaking the homogenizing criteria with which the
social organizations of the continent have been building, which is to understand
political organization as the sum of equals. We did not fall into that trap and we
gather among those who are prohibited from doing so. We are a complex
construction of heterogeneous political subjects connected to each other by
common dreams and rebellions. We are indigestible and unbearable for that
reason, we are polyglot for that reason too, our languages are multiple and also
our ability to dialogue with our society and with the world is equally
overwhelming (p. 611).
Currently, decolonial questioning is positioned at the core of Bolivian feminist theory. In fact, Silvia Rivera Cusicanqui (2015) proposes the creation of an epistemological encounter. “Taypi”, an Aymara word to describe an epicenter, an
53 encounter between opposites and a methodological tool to analyze written discourse as well as pictures and corporeal labor. The latter is important for the Bolivian context given that indigenous narratives were shared through woven knots in cords called “quipus”, during pre-colonial times (Locke, 1923; Tun, 2015). Rivera Cusicanqui (2015) stated:
Writing would reflect the discourse of the liberal sphere of citizen rights, which
are the kupi (Aymara for right), white and masculine half of the polis. On the
other hand, through the image and corporeal labor, the dark and feminine half of
the ch’iqa (Aymara for left) would be put into action, in the space of chuyma
(Aymara for chest, feelings) and the past, which harbor the community way of
perceiving (p. 301).
Other topics that are discussed among Bolivian feminist scholars include political disobedience and a radical imagination as a feminist praxis (Colanzi, 2019b), overrated social standards of motherhood (Morales Franco, 2019), depenalization of abortion as a fundamental right for women (Galindo, 2014), women´s exploitation and alienation
(Baudoin, 2019), fatphobia (Gutiérrez, 2019), rape culture (Senseve, 2019), migrant feminism (Canelas, 2019), rage as a fundamental tool for feminist change and progress
(Colanzi, 2019a), sexual dissidence (Egüez, 2019), gendered syndical organizations
(Spedding, 2019a) and the neoliberal domestication of bodies (Galindo, 2019). In the next chapter I will present the methodology I used for this research.
54 Chapter Three
III. Methodology
The thesis adds to the literature concerning qualitative decolonizing methodologies
(Smith, 2013) that criticize traditional methodologies that collect indigenous knowledges through lenses of imperialism to then be returned to the indigenous population from a colonizing position by addressing the following questions:
Whose research is it? Who owns it? Whose interests does it serve? Who will benefit from it? Who has designed its questions and framed its scope? Who will carry it out?
Who will write it up? How will its results be disseminated? (Smith, 2013, p. 15)
There are some parallels between this methodology and the “emancipatory disability studies” methods advocated by Oliver (1997b), where disability research needs to be aligned with an emancipatory research agenda and thus “can make a contribution to the combating of the oppression of disabled people” (Oliver, 1997b, p. 6). In order to do so, the social relations of research production need to be changed.
Therefore, I considered a global disability rights agenda before structuring the methods to do the research for this thesis. It is in this way that the interview guides and the analyses reflected the Convention on the Rights of Persons with Disabilities agenda.
I asked participants for suggestions to make the research a tool for collective empowerment as part of their interviews. This thesis adds new insights to the literature by making these theoretical connections and also highlighting their differences. For instance, the emphasis on indigenous knowledges is missing from Oliver’s (1997b) methodology, and there is a need to see how the absence of such perspectives taints the emancipatory methods he promoted. In a similar way, Feminist epistemologies explore
55 issues of power and domination, including in research methodologies. My thesis follows an inclusive feminist methodology that works toward the “development of an agenda, the conduct of specific projects, and participation in discourse” (Sprague & Zimmerman,
1993, p. 39).
In the same way, Latin-American and other Global South scholars write about emancipatory epistemologies that take into account global hierarchies such as ethno- racial privileges that position notions of religion, erotism (Dussel, 1977), heteronormativity and science of the Westerns above of the non-Westerns (Quijano,
2000). Indigenous knowledge has often been portrayed as coming from a past that stays still, static and archaic (Cusicanqui, 2012). By doing so the contemporaneity dimension of these populations is lost and excluded from the hegemonic modernity. It is necessary to understand modernity in the terms of Chatterjee (1997), who emphasizes the ambiguity of recognizing and rejecting those modernities that have been established by others.
The plurality of modernities that are not Eurocentric are often boxed as traditional
(Dube, 2002). Not only are the ideas of present, past and futures considered for this thesis, but also the way in which the methodology and methodological approach are applied, incorporating the Aymara notion of “Quipnayra” (Silvia Rivera Cusicanqui,
2010a). Quipnayra can be understood in an academic setting as moving forward while looking at only the past in front of one and the unknown future behind one. Oral history has a large trajectory in the indigenous Aymara Andean setting as a way to transfer knowledges from generation to generation and also geographically. It is necessary to use a decolonizing praxis in order to decipher unique dynamics in the Andean world context
(Rivera Cusicanqui, 2010b).
56 A. Study participants
study participants were thirteen disabled Bolivian women. Some of the women were indigenous, and others were mestizas, who reside in the urban and rural areas of
Bolivia. All of them speak Spanish. Therefore, I held the interviews in Spanish. The focus was on women with physical impairments, such as mobility impairments, blindness or vision impairment, and those who experience Deafness (framed either as a culture or an impairment). I did not interview women with cognitive impairments, thereby avoiding problematic issues associated with capacity to consent. That is not to imply that people with cognitive impairments cannot consent, but rather that such consent needs to be carefully considered and appropriate disability accommodations need to be made. For example, participants need to be given longer time to understand the research, and the process of research is completely different (Cameron & Murphy, 2007). Due to time constraints, a delimitation of the thesis is that I interviewed individuals only with physical and sensory impairments.
Thirteen women participated in the interviews. Their names were changed for this research. Each one of these women has unique contextual social backgrounds. Next, I will describe general information about each of the participants. Ali, who is in her fifties has experienced a physical disability as a result of polio for almost all her life. She is a psychologist with two Master of Arts degrees. She is a proud mother of one daughter (22) and two sons (30, 20). Regarding her economic situation, she admitted that she does not face financial problems. She is the director of the only Bolivian disability research institute. She has divorced twice and successfully ended love relations that simply got to an end. She loves swimming and acting, and she is passionate about singing. She
57 identified that belonging to a family that makes music was an important part of her identity.
Lily (49) has experienced living with a physical disability since age 27 after a car accident. She has a Master of Arts degree on disability studies from a public university.
She has Quechua parents, and she fluently speaks the language. She recognized that her parents did not want her to learn the language. At the moment of the interview, she was working at a human rights organization. She also mentioned that she wanted to have children but that she had encountered obstetric violence when trying to access to alternative reproductive options. Economically, she said she was not doing bad. She remembers growing up in a poor household. At the moment of the interview, she was worried about her retirement rent. She deeply enjoys dancing and going out to the only bar that she identified at semi-accessible with her friends from the disability social movement. She strongly advocates for a national independent living movement.
Andy (33) is a graphic designer, who has experienced a physical disability since she was born. She did not mention anything related to her ethnic background. At the time of the interview, she said she does not desire to be a mom. She advocates for inclusive sexual education and free access for abortions. She recognized that her economic situation is not bad. She loves singing and does not follow any religion. She holds an important public administration position. She acknowledged that her privileged access to health care outside of Bolivia allowed her to live with her disability and that she would have died without such privilege. Andi appreciates having a family that is fond of music.
She defends accessibility for wheelchair users in public places such as theaters and cinemas.
58 Veri (31) is currently studying hotel management at a technical institute. She finished high school some years ago. She has experienced partial blindness for all her life. The reasons of her impairment are unknown to her. She spent her childhood living at disability institutions in two of the main cities of Bolivia. At the moment of the interview, she was single and had only had one relationship with a non-disabled person. She did not mention anything about her ethnic background, and the color of her skin is toasty cinnamon. She said that she would like to be a mom someday. Regarding her economic status, she said she it is paramount to secure a fixed basic income for disabled women, especially those who are or plan to be mothers. She works selling jewelry on catalog she offers in different offices around her city. She likes singing and listening to music. She currently sings in her church choir. She speaks Spanish, some English and she is learning to speak Quechua.
Tori (51) is an entrepreneur who manages her own bakery catering. She is a
Quechua woman who is mother of five. Unfortunately, one of her them died in the accident she had when she became a wheelchair user. The car accident occurred when she was 32 years old. She has a high school diploma and recognizes that she is not in a terrible economic situation, all thanks to her independent work. However, she was worried because taxis were too expensive, and they were the only transportation available for her and her wheelchair. She likes working and taking care of her grandchildren. At the moment of the interview she was upset with her three daughters and son because they were not being respectful of the ways she raised them to be. She expressed pressure because she had to move forward without her husband, who also passed away in the car accident. She is an active member of a Christian church in her city.
59 Rosi (59) speaks Quechua and experiences a physical disability as a result of meningitis she had when she was 24 years old. She did not finish school, and at the moment of the interview, she was looking to start computer lessons and to move out to a place that was closer to her classes. She is mother of three children, unfortunately, one of them died with temperature when she had meningitis. Economically, she is independent.
She sells office material at the entrance of a public hospital and, at the time of the interview, she was separated from her husband because he did not support her active involvement in disability activities. Rosi enjoys doing good in the world and to work at the hospital. She does not want to be involved with politics, unless it is worth it. She prioritized her political commitment over her romantic relationship. She negotiated her space to sell at the hospital with the general director. She is president of the only disabled women’s organization in Bolivia. She and her organization advocate for more representation of women in disability movements.
Luci (54) has experienced arthritis and arthrosis after giving birth when she was
32 years old. She studied two years of biochemistry at a public university until she got pregnant with her first son and got married. She feels strongly encouraged by her four sons and daughter, but not much supported by her husband. She did not mention anything about her ethnic background, and her skin was a color similar to toasted cinnamon.
Regarding her economic status, she was worried about overcoming the financial struggle without a formal job. She was unemployed at the moment of the interview and planning to make Christmas handicrafts to sell on November. She clearly expressed her distrust in previous disability male leaders. She likes to engage in sports activities with her sons, and she run a newspaper marathon. At the time of the interview, she was learning sign
60 language. She is the president of her disability organization. She strongly advocates against ageism discrimination in workspaces.
Fran (44) speaks Aymara and has a bachelor’s degree in social work, and was preparing to apply for a master program, at the moment of the interview. Shea was raised in a rural warm part of Bolivia. She is a proud mom of two daughters, both were currently studying at the university. She experiences a physical identity since she had a car accident when she was 16 years old. She expressed concerned when addressing her socio-economic situation, and she emphasized that the rest of disabled women who are not part of any disability organization are experiencing precarious economic situations.
She enjoys learning new things about disability and spending time with her daughters. At the moment of the interview she was unemployed and running for a political position.
She was also separated from the father of her daughters. She expressed that she did not feel supported by her ex-partner. She defines herself as an anti-romantic.
Delia (52) experiences multiple sclerosis since she was 40 years old. She finished high school and started working as a hairdresser. She tried to take a specialization class, but the chemical smell was to strong and she could not continue. She is mother of three sons and one daughter. Her economic situation, according to her, is not going well, and she is struggling to survive. She does not know what caused her impairment. However, she recalls that she would always get sick easily as a child. She had informal jobs, used to teach how to dance folkloric music, and worked as a hairdresser and making handicrafts.
She stayed at a psychiatric hospital because she tried to commit suicide. At the moment of the interview, she was worried because she said her illness is expensive.
61 Mar (44) fluently speaks Aymara and Spanish. She learnt while being with her grandmother in an Aymara speaking community for a year. She experiences a physical disability as a result of a car accident, while going to her family’s rural community when she was 14 years old. She has a son. Economically speaking, at the moment of the interview, she was struggling. Although, she had a formal job. The salary was not enough to maintain her family. So, she produces handicrafts, usually to sell during Christmas season. She finished high school in a night accelerated school a couple years ago. She loves to play basketball and works as a secretary in one of the cities in Bolivia.
Kari (33) is about to finish her bachelor’s thesis in philosophy at a public university. She has experienced visual and mild hearing disability all her life as a product of x-ray exposure during her mom’s pregnancy. She speaks Spanish, English and understands some Aymara. Kari works at a public institution and even though it is a formal job, she still struggles to keep up with all of the medical expenses. She enjoys reading, writing and going out dancing with friends. She was impressed with a
Colombian calendar that had a sexually portrayed disabled woman in each month´s picture. She is highly concerned about the lack of accessible and decent sexual education for disabled girls and women. She considers herself as a happy person.
Nilo (30) is the founder of two youth disability organizations. She has been involved in disability activism since she was a teenager. At the moment of the interview, she was working on her bachelor’s thesis at a private university in one of the cities of
Bolivia as well as working in an internship at an international organization. She emphasized the importance of her mom in all her achievements and in navigating her disability successfully in education institutions. She has several technical degrees besides
62 a degree in education. She was worried about the price of hearing aid devices. She likes listening to music. She considers her boyfriend to be her best friend, who is also a disability activist.
Celia (40) is founder of a cerebral palsy organization. She has a bachelor’s degree in psychology from a public university in Bolivia. She is been accompanied by her cerebral palsy, as she described, for all her life. Celia explained that a while ago, she was visited by epilepsy, which forced her to get creative and find alternative economic incomes. At the moment of the interview, she said she enjoyed resting and playing game cards with her grandmother, mother, brother and nieces.
As evident, the disabled activist women that participated in this research are complex characters with unique perspectives. They have families, jobs, and social lives.
Their experiences across different social institutions, such the family, politics, education, economic, and religion, shape their viewpoints.
B. Sampling
I used purposive sampling to select women, who wanted to participate in the study as it allowed for theoretical and conceptual explanations (Given, 2015). I followed a convenience sampling approach (Marshall, 1996), as well as a snowball sampling technique, in which “people who know people who know what cases are information- rich” (Cresswell, 1998, p. 119) are identified.
C. Recruitment plan
First, I contacted the National Disability Council, who accepted to contribute to the study. Then, the Council sent out an email (See Appendix D) to its contacts asking for
63 people, who were interested in participating in the research. Women, who were interested, were told to contact me. The emails of these individuals were not shared with me. I interviewed only those people who chose to contact me. The email the national disability council sent to its contacts provided details on the importance of this thesis, explaining that the interviews would be face-to-face and might last between one and three hours. It also explained that the study’s results will be shared in a Spanish version with the participants, but the final results will be translated to English for the thesis and future publications or conference presentations.
D. Data collection and thematic analysis procedures
I conducted the thirteen unstructured interviews between July and August 2019, whichtook place in one of the offices at the national council of disability.They lasted between 50 and 90 minutes. I used an unstructured interview guide that was informed by official government documents related to disability in Bolivia. With the permission of the participants, I recorded the interviews, so that later I could transcribe each one. After transcribing the interviews, I moved on to the analysis.
A thematic analysis involves constructing themes that are recognized in the data through “careful reading and re-reading of the data” (Rice & Ezzy, 1999, p. 258). I took deductive and inductive approaches that entailed using themes from previous research to shape my lens for interpreting the data. However, I was also open to identifying themes that emerged based on the information shared in my interviews (Fereday & Muir-
Cochrane, 2006). My coding technique was guided by themes related to issues of social inclusion and exclusion associated with gender, disability and the specificities of the context. Specifically, my interview questions and analytical framework were shaped by
64 topics that were structured by themes that are recurrent in Disability studies research
(Mitra, 2018; Soldatic, 2018) and Transnational Feminist scholarship (Kaplan & Grewal,
1999; Swarr & Nagar, 2012). The themes for the unstructured questions were those identified by the Convention on the Rights of Peoples with Disabilities. The convention was adopted on 2006 with 82 signatories to the convention. It has 50 articles which identify obligations from states and rights for all disabled people. This international treaty was negotiated between civil society actors, human right institutions, and governments.
1. Specific experiences of women with disabilities
2. Children with disabilities
3. Awareness-raising
4. Accessibility
5. Right to life
6. Situations of risk and humanitarian emergencies
7. Equal recognition before the law
8. Access to justice
9. Liberty and security of person
10. Freedom of torture or cruel, inhuman or degrading treatment or punishment
11. Freedom from exploitation, violence and abuse
12. Protecting the integrity of the person
13. Liberty of movement and nationality
14. Living independently and being included in the community
15. Personal mobility
16. Freedom of expression and opinion, and access to information
65 17. Respect for privacy
18. Respect for home and the family
19. Education
20. Health
21. Habilitation and rehabilitation
22. Work and employment
23. Adequate standard of living and social protection
24. Participation in political and public life
25. Participation in cultural life, recreation, leisure and sport
During the analysis, I contemplated the patterns and differences revealed in the semi–structured interviews held with Disabled Bolivian women. I first categorized the interview data into codes and later organized them into thematic groups as suggested by
St. Pierre and Jackson (2014). After I identified thematic groups, I limited my attention to the more general topics and continued to analyze based on my literature review.
E. Ethical considerations
a. Ability to consent
Only people with the unchallenged ability to consent were interviewed. This means that a limitation of the research is that it does not include women with intellectual disabilities or women who are currently experiencing acute psycho-social symptoms.
Disability studies is very clear that it should not be automatically assumed that disabled people are a vulnerable group (Moore, Beazley, & Maelzer, 1998).
b. Recording consent
66 I obtained informed consent from the participants as required by the Institutional
Review Board at the University of Toledo. I recorded the names of the participants only on the consent forms and kept them in a separate locked file from the transcripts and the audio materials, which themselves are kept in a locked, password-protected computer.
One week before participants were interviewed, they received the recruitment email and consent form about the research. This process gave them enough time to read it, discuss it with others, and prepare any questions for me. Then, when we met in person, I gave participants an informed consent form, which described the nature of the research and the potential harms and benefits. I read it over with them and encouraged them to ask any questions before signing the consent form. Then, I asked for their permission to engage in this research and record the interview. I explained that it was voluntary and that they were free to withdraw from the research at any time. Upon agreeing, I asked participants to sign the consent form.
c. Privacy
I considered the participants’ privacy by allowing them to choose a pseudonym, therefore enhancing the confidentiality of the research (Given, 2015). As well as using pseudonyms instead of real names, I will not reveal names of organizations or specific details that may “inadvertently identify the participant” (Given, 2015, p. 34). I conducted one-on-one interviews at the offices of the national disability committee in a private room. Other than the consent form, the information that I gathered in the interviews remains confidential, and I did not record any identifiable markers. The interviews lasted from 45 minutes to two hours, depending on the answers of the research participant.
d. Harm to participants.
67 This research provided minimal risk of harm to participants, including loss of confidentiality and sensitivity to some of the research questions. In order to minimize risks, I kept the informed consent forms in a locked, password-encrypted file and ensured that participants did not have to respond to questions that made them uncomfortable.
Using pseudonyms also helped to minimize any risk of harm.
e. Benefits of research
Participants gained minimal personal benefit from the research. Specifically, they were not financially compensated. However, they had the opportunity to learn about the process of research. Also, the research may have helped them to better understand their own and other disabled Bolivian women’s political perspectives and experiences.
f. Protection of data
I explained to every participant that the data will be stored in a safe encrypted file in one computer, then analyzed and used for academic and advocacy purposes only. After this explanation, participants signed a consent form, where privacy and confidentiality obligations of the research were explained, letting the participant know that the information they provide will be anonymous. I informed participants about the writing and dissemination practices that may occur after the analyses of collected data. For example, the fact that I would use pseudonyms instead of real names and not mention names of organizations or specific details that may “inadvertently identify the participant” (Given, 2015, p. 34).
G. Dissemination plan
I will share the data collected from the research with participants in their native language, including my analysis, results and recommendations. I will give a digital copy
68 of the study to all participants. Later, I will create a dissemination plan with Bolivian women who participated in the study, given that it is a possibility that they may want to share the results with their organizations or in other Bolivian academic institutions. The dissemination plan will include potential publications in English and Spanish, as well as presentations in national and international conferences and in journal articles. It will be a priority to share this study with the local and national government and NGO’s that work in the field of disability. The most important element to consider is that a final dissemination plan will be created in active participation with the women who were interviewed.
69 Chapter Four
IV. Results
Central to exploring how participation in disability activism shapes the experiences of disabled Bolivian women is the understanding that activism is a fundamental and significant part of the lives of the participants of this study. In fact, they all described that a large part of their time is dedicated to their disability organization’s activities or explicitly explained that being a disability activist has changed their lives. The participants also saw value in research that centers them as disability activists and their experiences as leaders in their organizations. The findings of this study are framed by a transnational feminist disability perspective that focuses on the experiences acknowledging participants’ political stances.
Through an exploration of the participants’ experiences as disabled Bolivian women activists, this study reveals how their activism plays a role in how they imagine themselves and make sense of their worlds. Three major themes emerged through analysis of the interview data. The first theme is “embodying multiple identities,” which examines their overlapping identities as activists and as women, mothers, and wives. The second theme is “exercising disability activism,’ which explores practices involving work and sisterhood (community-building practices), as well as the participant’s achievements such as political consciousness and social incidence in national policies. And, the third theme describes how disabled activist women navigate and make sense of social institutions.
70 A. Embodying multiple identities
This theme focuses on participants’ experiences as activists and what this identity means for their lives as mothers, daughters, and wives. Embodying these multiple identities is not always an easy task for the participants. They often encounter what sociologists refer to as “role conflict” (Kahn, Wolfe, Quinn, & Snoek, 1964), which entails the participants feeling tension between family demands and the needs of their disability organization. Some participants also described how their statuses as mothers, daughters, wives and friends influenced how they enacted their roles as disability leaders and working women. Participants also described how embracing their identities motivated their activism. Not only did participants express their struggles negotiating their different identities in different social spheres, they also discussed the challenge of asserting themselves in the face of dehumanizing societal norms.
Disabled women are often portrayed as subjects of double discrimination
(Deegan, 2018; Díaz, 2012; Habib, 1995). However, feminist disability studies urges research to challenge “dominant assumptions about living with a disability” (Garland-
Thomson, 2005, p. 1557). So, when addressing multiple identities, activism is fundamental to avoid what SIilvia Rivera Cusicanqui (2015) describes as “agony photographs.” This concept refers to an ethnic encounter of identities based on the pity of others, which relates to the personal tragedy disability model (Oliver, 1990). When I relayed my plans to write this thesis, Ali, one of the participants, highlighted the importance of writing about disabled women’s leadership in the Bolivian context, she stated:
71 So, it seems to me, it is a relevant issue, since we live in a context that is very
machista, and very patriarchal where, when the leadership of an incredible woman
appears, like the women here. She is a whore, she is a crazy woman, I don't know
what, all to denigrate and discredit women because men can't tolerate our
leadership from their insecurity.
(Así que me parece un tema recontra pertinente, ya que vivimos en un contexto
que es muy machista, muy patriarcal donde, cuando aparece el liderazgo de una
mujer increíble, como de las mujeres que hay, se trata de que es una puta, que es
una loca, que no sé qué, que no sé cuánto para denigrar y desprestigiar a las
mujeres porque los hombres no pueden tolerar en su inseguridad nuestro
liderazgo.)
This quote shows how aware Ali is about the patriarchal context in which she develops her leadership. She emphasized how women leaders are labeled as “Putas” and “Locas,” in order to discredit their work. These labels are slurs that target their sexuality and mental health. Puta not only refers to a prostitute, as Sánchez and Galindo (2007) argue.
“Puta” is also word that shapes the sexual identity, as well as the political identity of women. Meanwhile, “loca” is referred to a person who is mentally disabled. However, as
Lagarde (2016) explains, the category of “loca” is assigned to those women, who are politically discriminated against, as a result of not following assigned stereotypical practices.
Activism is a fundamental part of the lives of this group of women. They all described that a large part of their time is dedicated to their disability organization’s activities, or explicitly explained that being a disability activist has changed their lives for
72 better. For instance, Luci, a 54 years-old woman, who has rheumatoid arthritis and osteoarthritis, explained that she spends all day dealing with her disability organization activities. She said:
As we are with the issue of leaders, I am a leader now. I don't stop at home
anymore. Always on the street, we go out in the morning and return at night.
(Como estamos con el tema de los dirigentes, soy una dirigente ahora. Ya no paro
ni en la casa. Siempre en la calle, salimos en la mañana y volvemos en la noche.)
She also linked her active participation in disability justice organizations to good health and a great level of organization. These are two elements to consider when thinking about benefits that women gain by participating actively in their organizations. Luci stated:
Me, when I'm on the street I'm better. When I'm at home, my head hurts,
everything hurts. I don't feel like doing anything. But I do cook for my children
because I wake up early, the first thing until the time I have to leave, has to be
cooked. I leave the food ready and I leave.
(Yo, cuando estoy en la calle estoy mejor. Cuando estoy en la casa, me duele mi
cabeza, me duele todo. No me da ganas de hacer nada. Pero sí dejo cocinado para
mis hijos porque me levanto temprano, lo primero hasta la hora que tengo que
salir ya tiene que estar cocinado. Lo dejo y me salgo.)
Headaches and body pain are the result of not being active, as Luci explained. She accomplishes both roles, as mother and as a disability leader, not because it is an obligation for her, but because she feels better being outside her home. Indeed, she does not enjoy staying within the confines of her house. In her case, her sons encourage her efforts and will even sometimes accompany Luci to do her disability leadership activities.
73 For example, one of her sons, who was 14 years of age, was present at the beginning of the interview, which may indicate a strong bond between them. Regarding her husband’s backing, however, she made it clear that he is not supportive of her activities, nor her disability. In fact, she barely mentioned him in the interview.
Activism is not celebrated within most of the participants’ households. In fact, in many cases, participating in their organization’s activities triggered problems with the participants’ families. For example, Rosy, a wheelchair user and activist, explained that she is currently separated from her husband, because he did not like her to be involved in disability activism.
I don't feel, how can I tell you, it hurts that these things are happening. My
husband is not supporting me. It hurts, but at the end of the day, I say, in my heart
this disability has been rooted that, how can I leave, knowing that it is wrong and
leave it that way. I can't take it out from my life, I can't. I said, well, I fight so
much with my husband about this. Oh, I better just talk softly. I stopped going to
the meetings for about two months, I didn’t do anything.
(No me siento, cómo le puedo decir, me duele que estas cosas estén sucediendo.
Mi esposo no me esté apoyando. Me duele, pero al final y al cabo, digo yo, en mi
corazón se ha enraizado esta discapacidad de que, cómo puedo dejar yo, sabiendo
que está mal y dejarlo así. No puedo arrancarlo, no puedo. He dicho yo, ya ay,
tanto peleo con mi esposo sobre esto. Ay, mejor hablaré suavito. Unos dos meses
no he ido a la reunión, no he hecho nada.)
As Rosi’s story illustrates, she tried to calm her husband by not getting too involved with disability activism. Nevertheless, this decision did not last long. She ended up speaking
74 in front of the United Nations disability committee in Geneva after several protests during 2016. The tension, created by trying to fulfill her own expectations as a brave leader and a submissive wife, ended when she chose to dedicate her time to the disability movement. She played a major role in the success of these protests and political intervention at the UN. During her interview, she expressed that she would love for her husband to come back to her, but only under the condition that she would be free to be involved in the movement that in her words “is rooted in her heart.”
Dealing with these family problems is common for activists. Fran, one of the interviewees, described how her high involvement in disability activism caused problems in her house, leading her dad to suggest that she should live in the disability organization’s office. Often, family members do not agree with the idea of their loved one spending what they consider to be too much time in a place where they do not see financial retribution. Fran shared her experience:
At the beginning, in 2008 I started to be part of the disability, I assumed my first
position at the Departmental Federation as the finance secretary and at my house
they told me, when I arrived at 8 at night, I left at 8 in the morning. And they told
me, you shouldn't come here anymore. You should take your mattress there, your
blanket and your pots to cook. It will be better if you no longer come here. So,
things like that, one, as a woman with a disability, doubly making the effort to be
a leader. It costs us, we have to break those patriarchal schemes from men, who
are machos and think, why do you do that if you are not going to achieve
anything.
75 (A principios, el 2008 empecé a formar parte de la discapacidad, asumí mi
primera cartera que era de Federación departamental como secretaría de hacienda
y en mi casa me decían, cuando llegaba a las 8 de la noche, salía a las 8 de la
mañana. Y me decían, ya no deberías venir tú aquí. Tú deberías llevarte tu
colchón allá, tu frazada y tus ollas a cocinar mejor que ya no vengas. Ósea que
cosas así, uno, como mujer con discapacidad doblemente haciendo el esfuerzo
para ser líder. Nos cuesta, tenemos que romper esos esquemas patriarcales que
están los hombres, mero, mero macho, para qué te metes vos si no vas a lograr
hacer.)
There are several elements to consider from this story. First, Fran addressed her participation in disability justice activities as being part of the disability group, it seems as if she did not consider herself as disabled before participating in the activist organization. There is a strong sense of belonging attached to her discourse. A second element is that she talked about exerting double the effort to be a leader, given her disability. And Third, Fran’s family seemed to feel abandoned by her, due to the extended amount of time she spends in the organization, and, therefore, suggested that she might as well not even return home at night.
Motherhood was found to be an important piece of identity for some of the participants. When talking about gender embodiment, they referred to being a mother as a synonym of being a woman. Fran, a physically disabled woman, who at the time was running for senator, explained that women will always be less corrupt than men in politics, because women think about their children before doing any dishonest action.
76 They always try to drown us, women leaders. Drown, cover us up. If we arose as
women, as leaders, it would be something else because women are less corrupt
than men. In the same political sphere. A woman will always think about her
children, her family. So, we can't be such thieves, let's say, if we go in the
political sphere. A female thief, no.
(Siempre tratan de ahogarnos, las mujeres líderes. Ahogarnos, taparnos para que
si surgiésemos como mujeres, como líderes sería otra cosa porque la mujer es
menos corrupta que el hombre. En el ámbito político igual. Una mujer siempre va
a pensar en sus hijos, a su familia. Ósea no podemos ser tan ladronas, digamos, si
vamos en el ámbito político. Una ratera, no.)
By thinking this way, Fran is assuming that any woman in politics is a mother. This supposition is not true for this group. For example, Andy, who is a wheelchair user and the only participant holding a political position, does not desire to have children. When talking about abortion she said:
If in my case, I don't want to be a mom, but I give you the case, bad example, if I
had a son and they detect, I wouldn't have that son. I would opt for abortion. For a
simple and simple reason, I am a person with disabilities and I have been through
different problems, I would not like my child to go through the same thing.
Knowing that we are in full construction and we are addressing the issue, trying to
eliminate different barriers, but I would not like, in my case. In addition, I believe
that abortion is a, the issue of abortion, religions have to come out of this
discussion. It is a public health issue, for me, it is clearly a public health issue.
77 (Si en mi caso, yo no quiero ser mamá, pero te pongo el caso, mal ejemplo, si yo
tuviera un hijo y detectan, yo no tendría ese hijo. Yo optaría por el aborto. Por una
simple y sencilla razón, soy una persona con discapacidad y he pasado por
distintas problemáticas, no me gustaría que mi hijo pase por lo mismo. Sabiendo
que estamos en plena construcción y estamos tratando el tema, intentando
eliminar distintas barreras, pero no me gustaría, en mi caso. Además, yo creo que
el aborto es un, el tema del aborto, las religiones tienen que salir de esta discusión.
Es un tema de salud pública, para mí, es un tema de salud pública netamente.)
Andy made the point that if she were to become pregnant with a disabled child, she would prefer to have an abortion because she knows the struggles and barriers that disabled people face. However, it is contradictory that later in her interview, she explained that she does not want to be a mother, independently of her children not having or having a disability, because she simply does not feel a maternal instinct. Her opinion regarding abortion is an example of the established goals of the reproductive rights movement, emphasizing the right to have an abortion, which is opposedto the goal of the
‘disability rights movement regarding reproductive freedom’ (Saxton, 2006, p. 105), which focuses on the right not to have an abortion. There is discrepancy about the reasons she gives about motherhood, as it seems that she talks about two separate issues. This second position was also defended by participants such as Ali, a physically impaired mother of four, who is aware of the social and medical impositions on disabled bodies, as well as the necessity for information and support for women to make their own decisions.
She stated:
78 I think that there has been forced sterilization in women with disabilities and the denial that we can live our sexuality, our motherhood, like any other woman.
There has been in the past that we are forced not to be sexual persons. The fact that we cannot recognize the dimension of our sexuality, in such a way that this has been done by force under the pretext, with the idea that, oh you are poor, that you have a disability, that you will not be able to do it. With the idea of a series of prejudices, of preconceptions that have made us look like people who cannot do things. I disagree at all. I think that the variables do not matter, the person, the woman with disabilities, must make their decisions. And that woman has the right to be well informed, well supported, etc. And the different instances must give the supports she needs.
(Yo pienso que ha existido la esterilización forzosa en mujeres con discapacidad y la negación a que nosotros podamos vivir nuestra sexualidad, nuestra maternidad, como cualquier otra mujer. Ha existido en el pasado el que se nos obligue a no ser personas sexuales. El que no podamos reconocer la dimensión de nuestra sexualidad, de tal manera que se ha hecho eso a la fuerza con el pretexto, con la idea de que ay que eres pobre, de que tienes discapacidad, de que no vas a poder.
Con la idea de una serie de prejuicios, de preconceptos que han hecho que parezcamos personas que no podemos hacer cosas. Yo estoy en absoluto desacuerdo. Pienso que no importan las variables, la persona, la mujer con discapacidad, debe tomar sus decisiones. Y esa mujer tiene derecho a estar bien informada, estar bien sostenida, etc. Y debe las distintas instancias darle los soportes que necesita.)
79 Andy’s story does not mention anything about the decision of other women to have children. Even though, she recognized that society is slowly changing to eliminate barriers, she positioned her own experience as the decisive reason to understand women, who do not want to bear disabled children. On the other hand, Ali explained that disabled women should have access to information to make decisions about their bodies. She is not in favor of abortion, mainly because she says that no one has the right to make decisions about the lives of others.
Ali shares a very similar opinion to Saxton (2006), who places prenatal tests as another form of social oppression imposed on disabled people. Note how Ali referred to the disabled women in Spanish with the male pronoun “nosotros,” even though she is strictly talking about women. This might be because disabled Bolivian women have not fully developed a communal identity as disabled women. Instead, they identify with the broader group of disabled people. In many cases, participants did not identify as disabled women, but as disabled people. In this sense, similarities are found between how the participants referred to themselves and how Anzaldúa (2016) describes Chicanas talking about themselves in a masculine pronoun. Anzaldúa shared her memory about when she was exposed to the application of the word, “nosotras” (us/we) in its feminine form. She said:
The first time I heard two women, a Puerto Rican and a Cuban, say the word
‘nosotras’ (‘we’) I was shocked. I had not known the word existed. Chicanas use
‘nosotros’ (‘we’) whether we’re male or female. Language is a male discourse.
(Anzaldúa, 2016, p. 76).
80 Disabled women do not name themselves as women because their identity is entrenched within the bigger group in which they feel belonging. Disabled people have been categorized as an asexual group, which might explain the reason why many participants used male pronouns when talking about their affinity groups. Andy explained that addressing disabled women’s realities is something that has not yet been talked about in the Bolivian society. She said that people are still understanding and learning about disabled people as a whole group without specifications within the group. She explained:
And on the issue of respect for women, it is also a pending issue. It is an issue
that, the issue of women and disabilities or women with disabilities is a pending
issue in the country, because we have not yet passed the gap to fully make visible
and solve the needs of people with disabilities, as such. So, it is a pending issue to
talk about women and disabilities.
(Y en el tema del respeto hacia la mujer, también es un tema que está pendiente.
Es un tema que, el tema de mujer y discapacidad o de las mujeres con
discapacidad es un tema pendiente en el país, porque no hemos pasado la brecha
todavía de visibilizar totalmente y solucionar las necesidades de las personas con
discapacidad, como tal. Entonces, es un tema pendiente el hablar de mujer y
discapacidad.)
Andy argued that the Bolivian context has not yet completely recognized the group of disabled people, so that an acknowledgment of disabled women is not yet installed in the public discourse. However, she recognized that this is a topic that should be addressed in the future. Andy put forth the idea that for disabled women to be recognized, it is first necessary for society to acknowledge the needs of disabled people as a whole.
81 Motherhood was a prevalent theme, which is not surprising, considering that seven out of the 13 participants are mothers. Furthermore, three other participants expressed their desire to become mothers someday. Disabled Bolivian mothers, indeed, embraces their identity as mothers. Similar findings were described in a study from
Ireland. Walsh-Gallagher, Sinclair, and Mc Conkey (2012), observed that even though mothers are confident about their pregnancy, medical staff still raised questions about their aptitudes to be mothers and treated them differently. In the case of the Bolivian disabled mothers, they expressed that even strangers treat them differently when they are out with their children in public spaces.
Disabled people have, in many contexts, been viewed by society as asexual
(Shakespeare, 2000), impotent, or undesirable (Rembis, 2010). Additionally, disabled women have been considered to be unfit or unworthy of being mothers (Walsh-Gallagher et al., 2012). The situation is no different in Bolivia. In fact, one of the main concerns was prejudice against disabled mothers. For instance, Veri, a 31 years-old blind woman with no children, shared her strong desire for support for single disabled mothers:
One of the things is that it costs us a little more, perhaps, but it is doable, it is a
matter of knowing how to organize. For example, I have friends who are single
mothers, equally disabled and are very, it is worthy of admiration because it costs
so much, if people who can see have a hard time. To us it’s worse, I say, much
more effort, but you can do it, with much effort. Mainly will force. I am not a
mom, so for me, life is a little bit easier. But anyway, otherwise, perhaps, things
get complicated. But already having children, all that, much more complicated.
82 And more when you can't see, because you don't have a job, it's very difficult to
get one.
(Una de las cosas es que nos cuesta un poco más, quizás, pero se puede, es
cuestión de saber organizarse. Por ejemplo, yo tengo amigas que son madres
solteras, igual discapacitadas y son muy, es digna de admirar porque cuesta tanto,
si a las personas que ven nomás les cuesta. A nosotros peor, yo digo, mucho más
el esfuerzo, pero se puede, con mucho esfuerzo. Principalmente voluntad. Yo no
soy mamá, entonces para mí, un poquito quizá es más fácil la vida. Pero igual, de
otra forma, quizá, se me complica las cosas. Pero ya teniendo hijos, todo eso,
mucho más complicado. Y más cuando una no ve, porque no tiene trabajo, es muy
difícil conseguir.)
Veri indicated that organization is central to life as a disabled woman. She also talked about how single disabled mothers are worth admiration because being a mother is already difficult, independent from having a disability or not. Veri emphasized the importance of willpower to overcome complications such as not having a job.
Being a mother has repercussions not only in the women’s homes, but also outside in the streets, while protesting and within their disability organizations. Some women explained that they consider their disability organizations as family and that maternal behavior is replicated in their activism settings. Following a ‘maternal, momma leaders style’
(Apfelbaum & Hadley, 1986, p. 215), where relations are developed through the identification of strengths and needs from all the group, motherhood influences the logistical strategy in protests and other disability justice activities.
83 For example, Rosi expressed that as a teenager she lost her mother, so she assumed a maternal role with her younger brothers, and replicated such role in her disability organization:
When my mother passed away, I started night school. I finished ninth grade at
night school. I was 17 years old. I was the older sister; my brothers are younger.
We are 5 of dad and mom. Ucha, that's why I've always been like this, worrying
about food, shelter, how sick this person is. So, the caravan was this for me.
(Yo cuando mi mamá ha fallecido, a nocturno me he entrado. He estado hasta
primero medio en nocturno. 17 años tenía. Yo era la hermana mayor, mis
hermanos son menores. Somos 5 de papá y mamá. Ucha, por eso siempre he sido,
que la comida, que el cobijo, que tal está enfermo. O sea, en la caravana era para
mí esto.)
Rosi explained how she behaved as a mother for her fellow activists during La Caravana protests, which were a cycle of protests where various disability organization leaders demanded a disability stipend from the government. By acting this way, she even got into fights with other male activist leaders, who would urge her to stop helping in the kitchen and to be present at the leaders’ meetings. She explained:
And they scolded me, but you are a CBBA representative, you have to be at the
meeting. Leave the kitchen Take your place. For me, the priority was my fellow
protesters, their needs. Those of Sucre, I see in the soap dish. Mrs. Rosi, leave
that, saying. I said, so I should leave people to die, so, I've fought. You should
start thinking and, I will come right now. I wouldn't let them boss me around.
Sometimes I fought, too.
84 (Y ellos me reñían, pero tú eres representante de CBBA, tienes que estar en la
reunión. Deja la cocina. Ocupa tu lugar. Para mí era la prioridad de mis
compañeras, su necesidad. Los de Sucre, veo en el jabonero. Doña Rosi, deje eso,
diciendo. Ósea, a tu alrededor que se muera la gente, me he peleado. Ustedes
estén haciendo las cosas, craneando, yo voy a venir ahorita. No me dejaba
mandonear. A veces me peleaba, también.)
Rosi made it clear to her male fellow leaders that her leadership role included looking after the well-being of the grassroot participants in all aspects, such as food and hygiene access. She stressed that, even if other male leaders asked her to ‘fill her role’, she would not let them boss her around. In fact, she would fight back and explain that she could manage to spend time in organizational level meetings, as well as managing the kitchen, as long as other leaders started the conversation on whatever needed to be discussed. The logic behind her male fellow leaders’ opinions is explained by Spedding (2019b), who explored how syndical male leaders in los Yungas did not care about household chores and that this neglection made it very difficult for syndical organization female leaders to form their parallel organization.
Similarly, Delia, explained how much she likes to provide support to the members of her association, especially the young people, saying that before anything, she is a mother. Even though, she is not the president of her organization, she feels the obligation to comfort the youth. She said:
Look, I came across two young people, Kevin is a person who is doing a career,
he will get his degree soon. And he has enough physical limitations, he supports
himself on two canes. His desire inspires, but when I have him in front of me, I
85 tell Kevin, when you want and when you need me, I'm there. Because first, first of
all I am a mother.
(Mira, me tropiezo con dos jóvenes, Kevin es una persona que está haciendo una
carrera, ya va a salir profesional. Y tiene bastantes limitaciones físicas, es
apoyado sobre dos bastones. Sus ganas, inspiran, pero cuando yo lo tengo en mi
delante, le digo Kevin, cuando tú quieras y cuando me necesites, estoy ahí.
Porque primero, ante todo soy madre.)
When asked about advantages and disadvantages of different types of impairments, Delia responded that she feels pity for those who are young and wheelchair users. This kind of pity could be analyzed through lenses of ‘juvenile ageism’ (Westman, 1991) and ableism
(Campbell, 2009) because the feeling is produced as a result of assuming that youth can only be enjoyed through an abled body and that disability is bearable when people are old, but not when they are young.
Being a mother is identified as either the biggest success in some of the participants’ points of view or a reason to overcome disabling barriers and move forward in life. Sacrifice, unconditional love and abnegation are some characteristics that participants used to describe what motherhood meant to them. Tori explained that after the car incident that left her in a wheelchair, she just wanted to die, but she found hope in her daughters. She said:
Before when I was healthy, I didn't feel that because I was active, but after my
accident my life changed. In the sense of seeing my children. Ah she is
hospitalized, continuously, operation, after operation. I psychologically, I think
that is where I have been the most traumatized. Apart from the mourning of my
86 husband, and my son. My other children were still young, so, I felt helpless, for
me, it was as if I had died, but where I was encouraged, or revived was by
doctors, psychologists. You have your young daughters, they need you. It doesn't
matter that you are like this, at least you are going to talk to them, at least you are
going to see their dreams, at least you are going to see them grow.
(Antes cuando yo estaba sana, no me sentía eso porque era activa, pero después de
mi accidente ya cambió mi vida. En el sentido de a ver a mis hijos. Ah está
hospitalizada, o sea que continuamente, operación, tras operación. Yo
psicológicamente, creo que ahí es donde más me he traumado. Aparte del luto de
mi esposo, y mi hijito. Mis otros hijos pequeños, ósea que me sentía impotente,
para mí que ya parece que he muerto, pero donde me animaba, o me reanimaban
eran los médicos, los psicólogos. Tienes tus hijas, pequeñas, te necesitan. No
importa que este así, pero tú por lo menos, les vas a hablar, por los menos les vas
a ver sus sueños, por lo menos les vas a ver crecer.)
The medical discourse that Tori was offered was one of hope. She went through a phase of mourning, due to the death of her husband and youngest son, as well as a phase to accept her disability. What is notable is that doctors did not encourage Tori to follow her own dreams, but to witness the dreams of her daughters. Just like her, other participants felt that their children were a motivation to continue with rehabilitation, or to continue studying and working.
For instance, Delia expressed that the most important success in her life was having raised her children properly. She stated that after trying to commit suicide, the only reason to continue with her life was her children. Delia also found strength in her
87 children to leave an abusive partner. She identified herself as a violence survivor and declared that she decided to grow apart for her two sons and daughter. Ideal motherhood is unachievable and blaming for all women, according to Malacrida (2009), including disabled women who face a particularly challenging identity construct to negotiate. It is not only about the social prejudices, but also the internal expectations that mothers have for themselves. For example, Fran explained:
Things like that, in particular I have been emerging. To date, and another thing is
to be a mother and a woman with a disability. Another is that, that society has a
stigma to see us pregnant with a crutch. It happened to me once, weird things.
When I went to the market to buy, I was young, with my little baby and my other
pregnant girl. Ohh, they told me with their opaque face, of that, I say that. Oh, you
have to take care of yourself, how are you going to get out. Maybe you make your
girl fall, so things like that. And it is really very complicated, to assume a
maternal responsibility and society does not yet have such an open mind to be
able to, always a limiting mind has society that we can achieve many things, as a
woman with a disability, do it in a technical way, as professionals that we are here
too.
(Cosas así, en lo particular he ido surgiendo yo. Hasta la fecha, y otra cosa es ser
madre y mujer con discapacidad. Otro es eso, que la sociedad tiene un estigma al
vernos embarazada con muleta. A mí me paso una vez, raras cosas. Cuando fui a
la cancha a comprar, yo fui joven, con mi bebé pequeña y mi otra niña
embarazada. Ohh, me decían con su cara opa, de esa, yo digo eso. Ay debes
cuidarte, cómo vas a salir. Por ahí le haces caer a tu niña, así cosas así. Y
88 realmente es bien complicado, asumir una responsabilidad materna y la sociedad
no tiene todavía la mente tan abierta para poder, siempre una mente limitativa
tiene la sociedad que nosotros podemos lograr muchas cosas, como mujer con
discapacidad, hacer una de manera técnica, como profesionales que somos aquí
también.)
Fran talked about society not having an open mind to accept that disabled women can be mothers and can also have an academic degree and be professional. She jumped from one characteristic to another in the same sentence. These two identity pieces in her life are denied by society. However, dealing with the pressure to be a good mother can lead to regret, such as the one experienced by Tori, a 51-year-old indigenous woman (mujer de pollera), who is a mother of four.
So, they have not wanted to cope with it, because they already made me realize
that I have failed quite a lot with them because I, the whole course of my incident
did not make them suffer at all. Nor have I told them, now I can't work anymore, I
don't walk, there's nothing. No, I continued on because I had a capital, a backup.
So, they have followed my path while I am in the hospital, with the workers, with
the lady that was in charge, has followed. But now that they are older, I know
they do not know what it is to suffer, and well with their partners they have
already gone, well, bad.
(Entonces, eso no lo han querido sobrellevar, porque ya me hicieron dar cuenta
que yo he fallado bastante con ellas porque yo, todo el trayecto de mi incidente no
les hecho sufrir en nada. Tampoco les he dicho, ahora yo ya no puedo trabajar, no
camino, no hay nada. No, he seguido continuando porque tenía un capital, un
89 respaldo. Entonces, ellos han seguido mi camino mientras yo esté en el hospital,
con los trabajadores, con la señora encargada que estaba, ha seguido. Pero ahora
que ya son mayores, sé que no saben qué es sufrir, y bueno con sus parejas ya han
ido, pues, mal.)
In this particular case, Tori felt she has failed as a mother because she did not show how hard life can be to her daughters. Even after the car accident that killed her husband and the youngest of her children, as well as making her a wheelchair user, she continued providing food and any necessity in her house. However, she also regrets that, because of her disability and the lack of accessibility in the educational institution, she could not attend her daughters’ school presentations. Tori explained:
But I felt helpless, for example, when they went to school, to meetings, to
parades, to dances it was very difficult for me because they had to go alone to rent
their dresses to dance, or had to look for a classmates’ mother of their group, send
them with them, they did help me. We will accompany. I contributed financially;
they didn't miss anything. But I felt helpless, hard for me, I said, I shouldn't live.
That was it for me, but seeing my daughters okay, okay, okay. Either way. I just
had to do it hard, because if I die, they won't study. Everyone will go out like me,
each one, directly to look for a job without studies, but I said, no. I will fight and
that has helped me a lot.
(Pero me sentía impotente, por ejemplo, cuando iban al colegio, a las reuniones, a
los desfiles, a las danzas era muy difícil para mí porque tenía que ellos ir solas a
fletarse, o buscar una compañera, una mamá de su grupo, mandarme a ellos, pero
sí me colaboraban. Nosotros vamos a acompañar. Sí aportaba económicamente,
90 no les hacía faltar nada. Pero yo me sentía impotente, difícil para mí que decía no
debería vivir. Eso era para mí, pero al ver a mis hijas ya, ya, ya. Ni modo. Nomás
tenía que darles duro, porque si yo me muero, no van a estudiar. Todos van a salir
como yo, cada cual, a buscarse un trabajo, pero yo decía, no. Lucharé y eso me ha
ayudado bastante.)
Tori values education, as she did not want her daughters to have the life she had. Tori did not finish school and started working by cleaning houses from a young age. It was after many years that she accomplished her goal to bake and have her own entrepreneurship. In a later piece of her interview, she said that even though she offered opportunities to study to all of her three daughters, one of them dropped out of school, a decision that Tori believes she is going to regret in the future.
Prejudices, such as believing that disabled mothers are not good mothers, are just one in many misleading assumptions about disabled women. Another prejudice that women face is the one that frames disabled women as “sexually victimized and at risk”
(Malacrida, 2009, p. 99). This is a difficult barrier for women, who desire to establish romantic relationships and become mothers. The reason is that it places disabled women as incapable of desiring such things, and only experience sexual intercourse as victims of violence. Lily, a 49 years-old woman, who was left by her fiancée after she became a wheelchair user as a result of a car accident explained:
Then, I, his mother, was no longer a woman for her son, you realize. I no longer
was of value for her. And then, he had commented to a friend, who has known us
for a lifetime that we have fallen in love with, and his friend tells him, but brother,
how are you going to get married, Lily is bad. Lily they used to tell me, Lily is
91 bad, how about if you get her pregnant. People will think you are abusive. You
realize, I had lost my right to be a mother, because I was in the chair, and the one
who got me pregnant was abusive. So, how serious, no? These are deep things
that, and that is what happens with women here, there is a strong lack of self-
esteem of women.
(Entonces, yo, para su mamá ya no era una mujer para su hijo, te das cuenta. Ya
no sirvo para ella. Y luego, le había comentado a un amigo, que nos ha conocido
de toda la vida que hemos enamorado, y su amigo le dice, pero hermano, cómo te
vas a casar, la Lily está mal. Lily me decían, la Lily está mal, qué tal si la
embarazas. La gente va a pensar que eres un abusivo. Te das cuenta, había
perdido mi derecho de ser madre, por estar en la silla, y el que me ha embarazado
era un abusivo. O sea, que grave, no. Son cosas profundas que, y eso es lo que
pasa en las mujeres aquí, hay una falta de autoestima de las mujeres muy fuerte.)
Lily recognized the low self-esteem in women as a result of society’s prejudices. She shared that it was hurtful to realize that she had lost her status as a woman in the eyes of her ex fiancée. She was surprised to hear that people would assume that if she were to ever have a child, the father of her baby would be viewed to be an abuser. This particular prejudice is fueled by the social imagery created by the media, where much of the news that portrays disabled mothers or pregnant disabled women only present them as a result of rape. Along similar lines, the media often creates the illusion that disabled women are children without personal agency. Such headlines include “Hombre violó y embarazó a su sobrina con discapacidad” (“Man raped and got his disabled niece pregnant”)
(Montaño, 2019), “Menor con discapacidad mental que fue violada está embarazada”
92 (“Minor with a mental disability who was raped is pregnant”) (Digital, 2017),
“Defensoría denuncia a funcionaria por encubrir casos de violencia sexual,” and
(“Human right defensor denounces social worker for covering up cases of sexual violence”) (Alanoca Paco, 2019).
Finally, a process of Othering develops as the participants themselves defined which disabled women should be allowed to be mothers. In the case of Delia, who talked about a young girl with multiple sclerosis, who wishes to be a mother, she tried to convince her not to think about motherhood. According to Delia, the young woman would not be capable of raising a child.
She thinks of being a mom and every opportunity I have to talk to her, her
reaction is very sad, as if she did not understand. She does not respond, but she
has mixed feelings that if you see her, she is supported on one side of her mother,
on the other side of her father. In that way, how could we raise a child.
(Piensa en ser mamá y cada oportunidad que yo tengo de hablar, su reacción es
muy triste, como que no se recibe. No responde, pero tiene unos sentimientos
encontrados que si tú la ves, anda apoyada de un lado de su mamá, del otro lado
de su papá. Así cómo podríamos criar un niño.)
Delia placed motherhood within a category of able-bodiedness. She stated that a disabled woman, who does not walk, could not raise a child. Just like her, Lucy is for the idea that there is a degree of disability allowed to be a mother. For instance, she stated that people with intellectual disability should not have babies, as it is not only a burden for the parents, but also for society. When talking about abortion, she said:
93 That question is very difficult because as a woman you will always love any
child, but, it is not only a burden for parents, it is a burden for society and for
many things. I mean, God forgive me, if that would happen, that in the first
month, until the second month, to suspend the pregnancy. Because there are
people with intellectual disabilities or psychomotor who are having relationships,
imagine that a child of them is born. What will they do, if they can't even keep up
with themselves? It doesn't have to happen after two months. The burden is for
parents, and there are times that parents die. The only ones who can stand you are
the parents.
(Es bien difícil esa pregunta porque como mujer siempre va a querer a cualquier
hijo, pero también no es sólo carga para los padres es para la sociedad y para
muchas cosas. Digo, dios me perdone, si es que eso se daría, eso en el primer mes,
hasta el segundo mes, suspender el embarazo. Porque hay personas con
discapacidad intelectual o psicomotora están teniendo relaciones, haber imagínate
que nazca un niño de ellos. ¿Qué van a hacer, si ni ellos pueden mantener? No
tiene que pasar de los dos meses. Es la carga para los padres, y hay ratos, los
padres se mueren. El único que te puede aguantar son los padres.)
Luci raised her voice when imagining a child, who is the result of the relationship between intellectually disabled children. Not only did she talk about disabled parenthood, but also about romantic relations of intellectually disabled people.
Scholarship about disabled people as the Other has been developed by many researchers and focused in different settings such as history (Clapton & Fitzgerald, 1997), schooling (Lalvani, 2015), cultural studies (Murdick, Shore, Gartin, & Chittooran, 2004),
94 anthropology (Kasnitz & Shuttleworth, 2001) and even feminist disability studies. For example, Wendell explains that “when we make people "other," we group them together as the objects of our experience” (1989, p. 116). This is the case of non-disabled people casting disabled people as the Other, based on power relations that are not convenient for the minority group. This explanation can also be used within the disability population.
For instance, some of the participants said that not all disabled women should be mothers.
This creates a division within the disabled community, where mentally disabled women and others casted as unfit to be mother become a minority.
B. Exercising disability activism
Exercising disability activism influences how the participants give meaning to disability. Their perspectives are all, in some way, consistent with the social model of disability. However, these women explore further a political consciousness that is intertwined within their social connections, specifically they created a disability sisterhood for their personal growth. In this section, I will explore some of the practices of disability activism that these women described such as their professional and political involvement. I will also examine their protagonist role in effectively achieving social change through protest, specifically, La Caravana, and within their own disability organizations. Finally, I will present an outline of their political agenda for the future.
a. Exercising disability activism through work and sisterhood
Transnational feminism “consciously attempts to traverse divides of cultures, nations, states, scales of analysis and academia and activism” (Patil, 2011, p. 540). By doing so, it recognizes the practices of activism as producers of knowledge. There are different ways to exercise activism such as volunteering in disability organizations,
95 creating art, researching, teaching, etc. In the same way, disability can be understood through many lenses and models. However, each lived experience is unique, as well as the contexts in which it is situated. Participants do not share the same conditions, but they all share the Bolivian context, circumscribed within geopolitical power dynamics that affect their material conditions. Opposed to common perceptions of disability as a tragedy (French & Swain, 2004), Bolivian activists include personal appreciations of disability such as considering it as their lovely companion, as a reason to fight, or as their reason to grow personally and professionally.
The lack of future is often portrayed onto disabled bodies and minds, (Kafer,
2013), envisions different possibilities for disability by first paying close attention to current rhetoric about disabled lives. By exploring a political/relational model of disability, the author pushes certain assumptions and unveils findings such as the notion that overcoming is not the only way to experience disability and that desiring disability is not an impossible feeling. The political/relational model is pertinent to start looking at how disabled activist women give meaning to their disability, practice activism and their political engagement, as well as the relation to their material conditions.
b. Professional engagement
Campbell (2009) identified how “disability success stories” (p. 29) can be created through the awareness of activism. There is a profound difference between framing success as “because of disability” and “in spite of impairment.” Specifically, the later only recognizes individual success, completely ignoring ableism. Meanwhile the first one defies imposed perceptions about disability as negative. For example, Ali, a psychologist
96 and director of the only research institution for disability in Bolivia, described how grateful she is for her disability:
I thank my disability for having been in my life because of it I can realize that he
was afraid, all the fears and complexes that Fran has, and sometimes I still have
them and weaknesses and everything you want, but I have also done more than I
thought I could do. I’ve been in Ethiopia, in a labor inclusion course, I’ve been in
the 19th European Union forum on human rights in Brussels, I was the speaker at
the third Community-based Rehabilitation continental congress in Quito, Ecuador,
in Medellin, Colombia, etc. The state lately at the global disability summit, the
previous month representing our country in Buenos Aires, on disability.
(Yo le agradezco a mi discapacidad el haber estado en mi vida porque a partir de
ello puedo darme cuenta que he tenido miedo, todos los miedos y los complejos
que tiene la Fran, y a veces los sigo teniendo y debilidades y todo lo que tú
quieras, pero también he hecho más de lo que pensaba poder hacer. He estado en
Etiopía, en un curso de inclusión laboral, he estado en el 19no foro de la Unión
Europea en materia de derechos humanos en Bruselas, he sido la ponente en el
tercer congreso continental de RBC en Quito en Ecuador, en Medellín en
Colombia, etc. He estado últimamente en la cumbre global de discapacidad, el
anterior mes representando a nuestro país en Buenos Aires, sobre discapacidad.)
A central element Ali mentioned was how disability contributed to the overcoming of fear. It is important to notice that is was not because of disability that she felt fear and weakness, but that because of her disability that she moved away from fear
97 and prejudices. It is clear how Ali was proud about all her professional accomplishments, as well as her disability.
In a similar way, Lily, a 49-year-old woman, who has worked in many disability projects with different NGOs and governmental departments asked herself if she would have had as many work accomplishments without her disability.
...my goal, before having the accident, was to go outside and work as a consultant.
I don't know if I could have succeeded, if I hadn't been injured in the accident.
But I have been injured, I had the accident and I suffered, everything you want,
but I have empowered myself on the issue of disability.
(…mi meta, antes de accidentarme era salir al exterior y ser consultora. No sé si
lo hubiera logrado, si no me hubiera accidentado. Pero me he accidentado, he
sufrido, todo lo que quieras, pero me he empoderado en el tema de discapacidad.)
In fact, she realizes that maybe if she would have not become disabled, she would not have been able to achieve all her professional goals. She continued:
That, afterwards, I worked as a NGO consultant, I have also worked as a
consultant in the ministry, several things, I have taught. So, it has allowed me
these things, right. That maybe, if I wasn't in the wheelchair, maybe I wasn't
going to make these things.
(Eso, después, he llegado a ser consultora de una ONG Bolivia, yo he hecho
consultoría también en el ministerio, varias cosas, he dictado docencia. Entonces,
me ha permitido estas cosas, no. Que tal vez, sino estaba en la silla de ruedas, tal
vez no lo iba a lograr.)
98 These two cases are good examples of how activism can also be practiced through professional work. Lily and Ali, like other participants, have created jobs and raised awareness about disabling barriers in different places.
Disability can be considered to be an opportunity for professional growth. For instance, Nilo was studying social communication at the time of the interview. Her thesis focused on implementing inclusive strategies at the university for people with hypoacusis, a hearing impairment of a conductive or neurosensory nature. She also worked as a sign language interpreter for two TV channels. Nilo, just like Ali, Fran,
Lilyand Celia, decided from a very young age to learn about their disability.
Consequently, their jobs were related to teaching or improving disability-related conditions for other people. Take Rosi, who works by selling in the streets at the door of one of the public hospitals in Cochabamba, for example. Even though her work is not truly related to disability, she spends half of her time guiding rural patients in the hospital. Disability related professional activities are an example of how disability activism is present in major aspects of the participant’s lives.
c. Sisterhood
Considering that there is only one organization that is exclusively for disabled women in Bolivia, one might think that there are no bonds between women within the disability population. However, what became evident was that all participants are part of a sisterhood that has provided them with benefits such as job opportunities, mutual care, access to legal resources, and empowerment through encouraging one another to raise their voices. However, participants did not mention the word, “sisterhood,” explicitly.
Lagarde (2009) defines this concept as a political gender pact among women, who
99 recognize each other as interlocutors, based on reciprocity and shared tasks to empower each other and achieve equality. The connections that participants described with other women, including those that are part of their families, consist of a sisterhood.
For example, some participants talked about the importance of their mothers in their development. Nilo, a hypoacoustic university student, credited her mother for having been able to achieve all that she has in her life. In fact, she declared that if it was not for her mother, she would be like most hypoacoustic people, who do not know how to write or read. This is another example where Otherness is developed through differences of capability.
…for example, my hearing impairment is from birth. Severe hearing loss. There is
mild, moderate, severe. Slight, has lost a little, but can hear something. Moderate,
a little has gone down, like almost half. And severe, a little deeper. In my case, I
could be like the others, if my parents had not supported me, but my mother has
always supported me, always, always. She was worried about buying a hearing
aid and I received a lot of discrimination, very strong. I did not understand why
society discriminated me. I did not understand why, when I was at the Technical
School, it was stronger, discrimination, very strong.
(…por ejemplo, de mi es de nacimiento, deficiencia auditiva. Hipoacusia severa.
Hay leve, moderada, severa. Leve, ha perdido un poco, pero escucha algo.
Moderada, un poquito ha bajado, como casi la mitad. Y severa, un poquito más
profundo. En mi caso, yo podría llegar como los otros, si no me apoyan mis
padres, pero mi mamá siempre me ha apoyado, siempre, siempre. Se preocupaba
de comprar audífono y he recibido mucha discriminación, muy fuerte. Yo no
100 entendía por qué la sociedad me discriminaba. No entendía por qué, cuando
estaba en el colegio Técnico, era más fuerte, discriminación, muy fuerte.)
Nilo is aware of the importance of her family support. Later in her interview, she explained that her father left her house when she was young and that her mother was her main support. She remembered that when her father still lived in her house, he would get mad with her mom whenever she tried to ask for money for the doctor or any hearing device for Nilo. This is an example of how Nilo and her mom developed a gender pact.
At the moment Nilo’s father left their home, the mother did not work, and so Nilo started working to help with the expenses for all eight siblings. This example is reflective how women resist patriarchal family control. Thus, contributing to the development of sisterhood
Sexuality was a recurrent topic in connection to sisterhood. As an example, Ali admitted that the reason that she was open about her sexuality was because her mother provided her with sexual education. She referred to her mother and sisters as important allies in her life.
I grew up in a family with a lot of openness towards sexuality. It was such a
natural and normal subject. We are 5 women, my mother has always been very
broad, very intelligent, very strategic in that regard. And I have been a
psychologist for the USAID AIDS project, so I have been an educator of gay
communities, sex workers, college students, young police officers on disability
issues, STD, HIV.
(Yo he crecido en una familia con mucha apertura hacia la sexualidad. Era un
tema tan natural y normal. Somos 5 mujeres, mi madre siempre ha sido muy
101 amplia, muy inteligente, muy estratégica en ese aspecto. Y he sido psicóloga del
proyecto contra el sida de USAID entonces he sido educadora de comunidades
gays, trabajadores sexuales, estudiantes de colegio, jóvenes policías en temas de
discapacidad, its, VIH.)
Experiences as Ali’s are not that common. However, we can see how access to information through her family contributed to Ali’s confidence to teach about sexual education with different populations, which she has done as a part of her activities for disability activism. Some academics, such as Mogollón (2014), claim that, in order to accomplish sexual education and services for disabled women, these same disabled women need to look at one other in sisterhood. An example of this lack of sisterhood for sexual education is made by Fran, who was not taught about menstruation, leading her to think that she was dying when she first got her period.
I used to live in the rural fields (...) and when I was 13 years old, I got my first
menstruation period, and as my mother had died when I was 5 years old, then
little girl and my siblings, obviously, 4 women, they were ashamed, I don´t know,
I was the youngest. And when I got my first period in the orange and chirimoya
fruits field grove, it gave me a stomachache, I thought it was normal. And it
started to bleed down, I said, way! I'm going to die now. (laughs) and I started to
cry and I felt so bad and there was no one to explain to me and absolutely no one
let me pass and the next month, I already had an idea, I used to look at my sisters
know but they have never explained it to me. I had an idea, but nobody told me,
every month you will bleed like this, so you have to do that, nothing. And that
little by little, one of my sisters who lived in CBBA, she tells me, you will bleed
102 down, you don't have to be scared, like that. Only when the fright had already
passed.
(Es que yo vivía en el campo (…) y a mis 13 años me baja y a mí como mi mamá
falleció cuando yo tenía 5 años de edad, entonces chiquita y mis hermanos,
obviamente, 4 mujeres y tenían vergüenza, qué sé yo, era la última. Y cuando me
bajo en la huerta de naranja de chirimoya, y me dio un dolor de estómago, yo
pensaba que era normal. Y me empieza a bajar, yo dije way, me voy a morir
ahora. (risas) y me puse a llorar y me sentí tan mal y no había quién me explique
y absolutamente nadie dejaba pasar y al mes siguiente, ya tenía idea, a mis
hermanas sé ver pero nunca me lo han explicado. Idea tenía, pero nadie me ha
dicho, cada mes te baja así, así tienes que así, nada. Y eso de a poco de a poco,
una de mis hermanas que vivía en CBBA, me dice, te va a bajar, no tienes que
asustarte, así. Recién cuando ya el susto había pasado.)
Fran is not the only participant who faced this lack of sexual education. In fact, other participants did not receive any information. This lack of sexual education is a concern that more than one participant raised. Providing sexual education was an objective of Fran’s disability organization.
Speaking of sexuality, look, I have met 27-year-old fellow women, who do not
know the menstrual cycle. Imagine, I couldn't believe it. And, it is also that they
have gone to the rehabilitation centers and there, they have not given these things.
Supposedly, we have no right, it will not happen, say. Seriously. I was like, you
don't know when your period is coming, right? They don't even know how to take
103 care of themselves, nothing. From those basic things, we have had to teach my
classmates in the organization.
(Hablando de sexualidad, mira, he conocido a compañeras de 27 años, que no
saben el ciclo menstrual. Imagínate, no podía creer. Y, es que tampoco, han ido
más a los centros de rehabilitación y ahí no les han dado estas cosas.
Supuestamente, no tenemos derecho, no va a pasar, digamos. Grave. Yo, no sabes
cuándo te viene tu regla, ¿no? No saben ni cómo cuidarse, nada. Desde esas cosas
básicas, hemos tenido que enseñar a mis compañeras en la organización.)
Fran’s experience is a concrete example in which sisterhood was intrinsic in sexual education processes, which are a base for “sexual freedoms” (Gill, 2015). There are other examples that show how sisterhood is a way to navigate disability, provide social capital and offer a sense of belonging to a group. It also provides material benefits such as access to the monthly stipend, legal resources, and even job. For example, Mar got her current job through a friendship with a woman employee. This opportunity happened twice; the first time she started working in a textile factory and the second time as a secretary in the National disability office. Another example of sisterhood was shared by Tori:
Well, women with disabilities, well I've been one for 19 years now, because of an
accident. But, all these 18 years I did not move at all, to anywhere. I was
independent, after the accident, I had never associated myself with any
organization, nothing until I met Mrs. Rosi on January 1st. I had a cystotomy
operation. So, that is when I walked alone, without support from my children.
Then Mrs. Rosi gave me the support, that’s why I contacted her, now, there are
104 meetings. She has already put me on the list of her organization. And well, I'm
recently learning, I had never received the disability stipend. I didn't know how
to. I was locked up at home, working for my children.
(Ucha, las mujeres con discapacidad, yo bueno yo ya estoy 19 años por un
accidente. Ya, pero yo no había salido todos estos 18 años a ninguna parte. Era
independiente, después del accidente, nunca me había asociado a ninguna
asociación, nada hasta conocerme con doña Rosi el 1ro de enero. Tuve una
operación de cistotomía. Ya, entonces ahí es donde he caminado sola, sin apoyo
de mis hijos. Entonces me dio el apoyo Doña Rosemary por el cual ya con ella me
contacto, ya hay reuniones. Ya me ha puesto en la lista de su asociación. Y bueno,
estoy aprendiendo recién, tampoco nunca había percibido el bono de
discapacidad. Tampoco sabía. Yo estaba encerrada en casa, trabajando por mis
hijos.)
Tori spent almost two decades without any support or knowledge about disability benefits, and it was only when she was informed by another disabled woman that she started to get involved and receive her disability stipend. Tori got to know the president of her disability association in the hospital when she had no one to take care of her. It was the president, a woman activist, who guided her in several aspects such as how to move around the hospital and present the necessary documents for her benefits. Families are also part of a sisterhood network. Such experience is the one of Celia, who insists on thanking her mom and grandma for being with her since the beginning of her life. They represent a motivation for Celia, she explained:
105 My family has been the fundamental pillar for me to be here, even here, sitting at
40 years old. I currently live with my mom and my grandmother. My younger
brothers, they are already married, one is in Spain with their two daughters, he is
separated and my other brother lives here, with his wife and daughter, who you
saw. I live with my mother, who is the lady who was here, and my grandmother,
who is 84 years old. Both are my pillar, then. They move me and for them I have
also come forward.
(Mi familia ha sido el pilar fundamental para que yo este, incluso, aquí, sentada a
mis 40 años. Vivo actualmente con mi mamá y mi abuelita. Mis hermanos
menores, ya son casados, una está en España con sus dos hijas, es separada y mi
otro hermano vive aquí, con su esposa y su hijita, que la has visto, ella. Yo vivo
con mi mamá, que es la señora que estaba aquí, y mi abuelita, que tiene 84 años.
Las dos son mi pilar, pues. Ellas me mueven y por ellas también he salido
adelante.)
The creation of social networks is an important process for women activists.
These connections provide grounds for shared knowledge that might be on personal topics such as menstruation or where to find a job. Sisterhood can be reached with strangers in the streets or with family. What is important is that empowering women, through sisterhood, is part of a strategy to achieve fundamental policies with gender perspective (Solís, 2017).
C. Social change and political consciousness
Political consciousness is an awakening of oneself as part of a social history of inequalities, in this case a feminist disability history. Garland-Thompson
106 (2005) insists on the nature of exploring this history with “a sharp political edge and a vigorous critical punch” (2005, p. 1557). Coming into a political consciousness is analogous to the mestiza consciousness that “lies in healing the split that originates in the very foundation of our lives, our culture, our languages, our thought” (Anzaldúa, 2016, p.
102). This effort is the beginning of a long struggle that fluctuates between individual and social actions to overcome dualities such as capable/incapable. Participants are aware of their struggle, as well as the intents to engage politically through political incidence.
Denouncing corruption within disability organizations is one of the ways that participants politically challenge the status quo. However, this action might result in revenge from the person who was corrupt. Luci (2019), for example, talked about how she denounced a man, who was stealing money from a disability organization. After she did so, the man used his political power to have Luci’s son removed from his job. A similar situation happened to Lily, who uncovered a corruption case where the national disability leader, who was a man, was restricting the participation of women to an international event, only so that he could take his girlfriend to travel with him. After denouncing him, she was aware that the two men would seek for revenge.
Denouncing political violence is another experience shared by one of the participants. Andy said:
Very recently, before being elected president, a councilwoman from another
political party said that when we were on the ballot for the election for the new
directive, that she did not vote for me, because she needed a person who was able
to assume the presidency of the council. There were no more arguments about it,
it was just that. So that, to me, is discrimination. And it is political violence. And
107 it also comes from one woman to another woman. In the next few days I will file
a complaint before ACOBOL for this fact. I have felt more discrimination as a
woman than as a person with disability and a lot of political violence, a lot of
political harassment.
(Hace muy poco, antes de ser elegida presidenta, una concejala de otro partido
político aseguró que cuando estábamos en la votación para la elección para la
nueva directiva, que no votaba por mí, porque necesitaba una persona que sea
capaz para asumir la presidencia del consejo. No hubo más argumentos al
respecto, simplemente fue eso. Entonces eso para mí, es discriminación. Y es
violencia política. Y además viene de una mujer hacia otra mujer. Yo en los
próximos días voy a sentar una denuncia antes ACOBOL por este hecho. Yo he
sentido más discriminación como mujer que como persona con discapacidad y
mucha violencia política, mucho acoso político.)
Andy emphasized how political violence may be produced through gender discrimination. She specifically claimed that she has felt more discrimination as a woman than as a disabled person, almost as if she could not identify herself as a disabled woman.
There is split between herself as disabled and herself as a woman. Another aspect to consider is, what does it mean to be capable to assume the council? Andy interpreted her colleagues’ comment as if she was referring to Andy’s lack of capability because she was a woman, even though her colleague was also a woman.
The previous examples of women denouncing corruption might be seen as small.
However, their commitment to do so puts them in a risky situation. Their political consciousness is developed through actions of resistance, as they do not allow themselves
108 to remain quiet or submissive. There are other ways in which participants have achieved social change as the next section describes.
a. Participation in “La Caravana”
A more explicit example of exercising a political consciousness is through participation in social movements (Meyer, 2007), which undoubtedly is made by disability activists in Bolivia. La Caravana protest during 2016 is an important political conquest not only for the disability sector, but, also, and probably less noticeable, for the political history of Bolivia during the presidency of Evo Morales. This activity is an example of how grassroots organizations were able to contest the government and show that their many promises towards a more inclusive society were not accomplished. The defense and protection of disability rights has been translated into laws and governmental speeches but has not been translated into State practices (Guisbert Rosado, 2016a). In
2016, a march of thousands of people with disabilities achieved a monthly stipend of approximately $35 for disabled people categorized as severely impaired. Nevertheless, the protestors faced violent repression.
The march, or ‘Caravan’ from Cochabamba to La Paz, which was approximately
360 miles long and lasted more than one month, was a central moment for the political contemporary history of Bolivia. It “called attention to discrimination with a voice that echoed throughout Bolivia and the world” (Chihak, 2018, p. 5). Such organization was made possible by the participation of great disabled women strategists. This milestone in the social movements history of Bolivia was also a significant event in the lives of many of the participants. The participants’ engagement demonstrates how they gained consciousness as leaders, and the importance of their participation to achieve a positive
109 result. Rosi explained that she has had a personal feminist revelation while participating in this protest:
But now, thank God, I do not say for myself, since the Caravan, I have already
opened my eyes. I have my rights and I must enforce my rights. In the meantime,
my husband still wanted me to have him there at home, cook and nothing else.
like, one house chores. However, even if we are disabled, we can move forward.
So, I believe that women are realizing that we must make others respect us and
enforce rights change.
(Pero ahora, gracias a dios, no digo por mí, desde la Caravana ya he abierto los
ojos. Yo tengo mis derechos y debo hacer respetar mis derechos. Como tanto aún
mi marido me seguía queriendo tenerlo ahí en la casa, cocinar y nada más. O sea,
las cosas de la casa. Pero, sin embargo, aun siendo con discapacidad podemos
salir adelante. Así que, yo creo que las mujeres se están dando cuenta a que si
debemos hacernos respetar los derechos cambiar.)
It was during this national cycle of protests that some of the women participating gained a sense of an identity that was within the minority group of disabled people by recognizing themselves as not only disabled, but also as women. In fact, the only organization in the country that is focused only on disabled women was created after La
Caravana protests. Ali explains:
Then, within the sector of women with disabilities in Bolivia, there are
impressive, incredible women. Incredibly brave, firm, committed. An example of
this is the mobilization of the year 2016, when many men, who were supposed to
be the intellectual authors of the mobilization, who had started in some way with
110 their ideas. In the end it was the women with disabilities who have remained ,
who have been involved, who have committed much more than men and have
been the most consistent and brave people and most capable of supporting and
managing all the frustrations, bad news, everything that was being played at that
time. So that thanks to these women with disabilities in our country when we talk
to authorities there is a before and after the mobilization of 2016.
(Entonces dentro del sector de mujeres con discapacidad en Bolivia, hay mujeres
impresionantes, increíbles. Increíblemente valientes, firmes, comprometidas. Un
ejemplo de ello es la movilización del año 2016, cuando muchos hombres, que se
suponía que eran los autores intelectuales de la movilización, los que había
iniciado de alguna manera y con sus ideas, al final han sido las mujeres con
discapacidad que han permanecido, que se han involucrado, que se han
comprometido muchísimo más que los hombres y han sido las personas más
consecuentes y más valientes y más capaces de soportar y de gestionar todas las
frustraciones, las malas noticias, todo lo que en ese momento se jugaba. De tal
manera que gracias a estas mujeres con discapacidad en nuestro país cuando
hablamos con autoridades existe un antes y un después de la movilización del año
2016.)
Ali put forth the idea that the political success from La Caravana was only possible due to the disabled women’s participation. She also provided important differences between disabled men and women’s attitudes and commitment, establishing that the latter was stronger. Moreover, there is a disruption in her perception about men and their role as leaders. Ali assigned certain values to the women protesters such as awesome, incredible,
111 brave, committed and consequent. Ali also made it clear that the central element that differentiates men and women participation was the disabled women’s abilities to manage frustration and bad news. This is an example of how emotional intelligence and effective leadership are perceived to be related to each other and gender (Kerr, Garvin,
Heaton, & Boyle, 2006).
A major concern for the protest leaders was security for all participants of the movement. There was a need to protect people from police, who violently responded to the protests. Protesters even complained about psychological intimidation. Police would make loud noises close to the vigil with motorcycles and dogs, which altered the nerves of everyone, especially the mentally disabled protesters (ANF, 2016). Lily, one of the interviewees, when asked if she had ever been insulted or treated wrongly, responded that during the protests she felt as if she did not matter to the government. She remembered that during one of the cold nights in La Paz, the police cut the tents where protesters were sleeping. So, leaders needed to be extra careful with police, but also with the behavior of men protesters, as some would sexually exploit young women protesters. The responsibility of women leaders had during the protests even reached the policing of sexual behavior, including abuses. Rosi explained:
As the responsible person, you bear all responsibility. The vigil, when I arrived
here, continued. So now, people wanted to go over. Boyfriends, at night they were
going to drink. I did not sleep every night. In the end I decided to stop the vigil.
Not because I gave up, no. It is that things would have been my responsibility.
(Como responsable, llevas toda la responsabilidad. La vigilia, cuando he llegado
aquí, seguía. Entonces ya, la gente quería pasarse. Novios, de noche se iban a
112 tomar. Yo no dormía cada noche. Al final he decidido que se levante la vigilia. No
porque me he rendido, no. Es que las cosas hubieran sido mi responsabilidad.)
Women leaders tried to prevent abuses, but they were not able to avoid them. Several cases of sexual abuse were reported, in which male protesters were the abusers (Mena,
2016). Disabled women activists did not only participate as logistic experts, but also as caretakers. However, during the interviews, both Rosi and Luci talked about inappropriate sexual behavior when, in reality, it was sexual abuse. It seemed as if rape and abuse were not clearly acknowledged in all cases. Rosi explained that couples would go drinking some nights but does not directly address male perpetuators as the problem.
This is a clear example of the reproduction of machista attitudes and discourses by women (Mendez Cruz, 2012), also called femichismo (Cruz, 2016), where rape victims are blamed for their behavior. For instance, Luci talked about how male leaders had sexual relations with the intellectually disabled women, disregarding any possible rape cases. She said:
I don't know if you heard about the Caravan in 2016. There were more men as
leaders. They have even had relationships with them, intellectuals and there was
no one to control them.
(No sé si habrás escuchado de la Caravana el 2016. Ahí había más hombres de
dirigentes. Incluso han llegado a tener relaciones con ellas, las intelectuales y no
había quién les controle.)
A central element is how Luci situated the control of bodies as a normal practice when targeting intellectually disabled women. She expected someone to look after them, as if men leaders had the right commit sexual abuse, or if not the right, at least there is the
113 assumption that men will commit sexual abuse, that it should be taken for granted. Later in the interview, I asked her if she was talking about consensual sex or rape cases, and she responded:
An abuse, there, I do not know how their mothers raised them, but there are some
women that put their shoulders on men and already loosen everything, right? I
didn't like that. I always watched that. Even among leaders. I've seen all those
things. The women didn’t make others respect them. That is why I have told
them, none of this you are going to point with your dirty finger to me that I have
done something wrong.
(Un abuso, ahí yo no sé también cómo les criaran sus mamás, pero hay unas que
se les pone el hombro y ya aflojan todo, ¿no? Eso a mí no me gustaba. Siempre
observaba eso. Inclusive entre dirigente. Yo he visto todas esas cosas. No se
hacían respetar ellas. Por eso yo les he dicho, ninguno de esto usted me va a
señalar con su cochino dedo a mí que he hecho alguna cosa mala.)
Luci did not only blame the intellectually disabled women for being rape survivors, but also blamed their mothers, based on her belief that they did not raise their disabled daughters in a proper way. These kinds of comments are common in the Bolivian context as affirmed by Mendez Cruz (2012), who explored machista discourse and practices reproduced by women in Cochabamba. When talking about reported rape cases in the media, Luci explained that the most commented case was dismissed because the alleged rapist was physically disabled so, police could not believe he was physically capable of raping. This is an ableist assumption. Contradictions like this one are part of the struggle that women experience in Bolivia.
114 Dealing with the abuses from the police and from male leaders was just one of the duties women had during La Caravana. The planning for the protests was an important task. One of the disability organizations in Cochabamba first contacted all of the disability organizations across the country. Rosi detailed that she was responsible for contacting all organizations in the country. Lily is one of the activists, who responded to this call and joined the cause. She carefully analyzed the benefits that participating would provide her own organization such as raising awareness of the independent living movement. Lily explained:
The fellows said we want to become independent, but we don't have any money to
pay the rent. When we found out in the caravan, one of the requests was 500
Bolivians per month, 500 Bolivians or so is 72 dollars, you can calculate in
dollars, per month, to live. So that we have analyzed as an independent life
movement and said, it would be good if we can fight for this.
(Los compañeros decían queremos independizarnos, pero no tenemos nada de
plata ni para pagar el alquiler. Cuando nos enteramos en la caravana, una de las
peticiones era 500 bolivianos al mes, 500 bolivianos más o menos es 72 dólares,
tú lo puede sacar en dólares, al mes, para vivir. Entonces eso hemos analizado
como movimiento de vida independiente y hemos dicho, sería bien que podamos
luchar por esto.)
Lily placed the opinions of her organization’s members as central to the decision to participate in La Caravana. Although there were other petitions, such as access to health, inclusive education and others, Lily’s organization only considered the access to an economic stipend as worth protesting. The protest strategy was shared with all leaders.
115 Lily elucidated how her own connections helped the general planning, as the strategies disability protesters used were informed by knowledge on political incidence gained over national and international contacts. She said:
That has been our goal, and also, there is no health, there is no education, but in
reality, these colleagues from Japan, who are also wheelchair users, have taught
us how to advocate for policies. So, we have raised three key points, the first, the
monthly income of 500 Bolivians, so we created the movement. Many of the
leaders left the movement, the caravan for several things, right. But, others, those
of us who were engaged, uh, yes, we fought for it, we went to ask for the rent.
This has been the fight that we have, we have participated in the movement. Well,
that.
(Ese ha sido nuestra meta, y también, no hay salud, no hay educación, pero en
realidad, estos compañeros de Japón, que también son usuarios de silla de ruedas,
nos han enseñado cómo hacer incidencia en políticas. Entonces, hemos planteado
tres puntos clave, el primero, la renta mensual de 500 bolivianos, así hemos
creado el movimiento. Muchos de los dirigentes han dejado el movimiento, la
caravana por varias cosas, no. Pero, otros, los que estábamos comprometidos,
ucha, sí que hemos luchado por la, hemos ido a pedir la renta. Así ha sido la lucha
con eso nos hemos, hemos participado del movimiento. Bueno, eso.)
Even though Lily mentioned that there were three main claims for the government, she only noted the first one, the economic stipend. This is related to the connection between poverty and disability. It is difficult to include priorities that are not linked to the access to economic resources because the most urgent issues can only be solved with money.
116 Another important element is that the strategy used for the protests was a result of political incidence training given by Japanese wheelchair-user activists. This is a clear example of how international relations influence disability activism in Bolivia.
b. Political agenda.
As any other social movement, the disability sector in Bolivia has a political agenda. In fact, each of the activist organizations has its own goals that are being pursued. Participants did not share any official document with the researcher about their future plans regarding disability justice. However, each of the women activists described their personal goals or dreams, as well as the projects that they were currently working on. Although not all the participants know each other, they all had a shared goal for the disabled women’s population, specifically more representation. Disability activists identified the need to get more women engaged because of the low political participation of women, not only in the disability sector, but in politics and other public spaces. For example, Andy said:
It is not easy, because as far as I understand right now, I am the only person with
a disability in a position like this. It is necessary to generate leaders among the
people with disability, we need to take spaces to make ourselves visible, to say
this is wrong, because a single person cannot do it all, and if you also have to
work with people who do not have disabilities and who do not understand it, then,
only one person cannot generate this change and transformation. We need a
generation of leaders of people with disabilities and what better than women.
Much better if they are women. There they can highlight the issue of people with
disabilities, capable and also that she is a woman and who can also do it, it is
117 necessary to start generating many more leaders within the population with
disabilities.
(No es nada fácil, porque hasta donde tengo entendido ahorita, soy una sola
persona con discapacidad en un cargo como este. Se necesita generar lideres entre
las pcd, necesitamos tomar espacios para visibilizarnos, para decir esto está mal,
porque una sola persona no lo puede hacer, y si además tienes que trabajar con
personas que no tienen discapacidad y que no la comprenden, entonces una sola
persona no puede generar esta cambio y transformación. Necesitamos una
generación de líderes de personas con discapacidad y qué mejor que sean mujeres.
Mucho mejor si son mujeres. Ahí pueden resaltar el tema de personas con
discapacidad, capaz y además que es mujer y que también puede hacerlo, se
necesita empezar a generar muchos más líderes dentro de la población con
discapacidad.)
Andy highlighted the need for more disabled women in leadership as she acknowledged that, in order to achieve societal change, more women will have to get involved. It is stressed that having only one person to represent the disabled population will not do enough to create any change. The lack of solidarity is clear when Andy addresses the lack of understanding from non-disabled people.
Another participant talked about the contradictions on legislature and governmental discourse and practices. She said:
The movement of women with disabilities, at the moment is a bit weak, you have
to be realistic and very objective, right? Actually, it is difficult for us to assume
some leadership because in reality there is little political participation, either with
118 disabilities or without disabilities. Women, I see exceptionally well reduced.
There are 30 men and 15 women, a difference in participation well unbalanced.
Which should not be this way.
(El movimiento de mujeres con discapacidad, por el momento es un poco bien
débil, hay que ser realista y bien objetiva, ¿no? En realidad, nos cuesta asumir
algunos liderazgos porque en realidad hay poca participación política, ya sea con
discapacidad o sin discapacidad. Mujeres, yo veo excepcionalmente bien
reducido. Hay 30 hombre y 15 mujeres, ósea una diferencia en la participación
bien desequilibrada. Lo cual no debería ser esto así.)
Fran attributed that the difficulty for disabled women leaders is the lack of political role models. Women are holding political positions. However, it is only to accomplish the affirmative action requirements. In fact, women are not making decisions, given that in many cases they are not prepared for the position they hold. Fran continued to explain:
But another thing is with the Bolivian culture, we have to fight a little more, that
we need, but they still say in Aymara ¨chikata chikata¨ half, half say the
percentage of the participation of women should be, but always the man is
wanting, used to having the political space, the work space, the space within the
family, so, the man had emerged before. We know since 1952 about the
revolutions that have existed. Voting was worse before, talking about history too.
Now a little yes, I say there is an advance of about 38%. In practice, but in theory
it is 50-50, but that doesn't happen much.
(Pero otra cosa es con la cultura boliviana, hay que pelear todavía un poco más,
que nos falta, pero aun dicen en aymara ¨chikata chikata¨ la mitad, la mitad dicen
119 el porcentaje de la participación de las mujeres debería ser, pero siempre el
hombre está queriendo, acostumbrado está a tener el espacio político, el espacio
laboral, el espacio dentro la familia, o sea, el hombre había surgido desde antes.
Sabemos desde el año 1952 de las revoluciones que han existido. Las votaciones,
antes era peor, hablando de la historia también. Ahora un poco sí, yo digo que hay
un avance de unos 38%. En la práctica, pero en la teoría es 50-50, pero eso no se
ve mucho.)
Fran talked about “chikata-chitaka,” an Aymara term that means half-half, as a political illusion. This is part of the discursive structure that is engraved in the Bolivian government. It is a revolutionary and just concept, but, when it comes to its practical implications, just as Fran described, it is not accomplished. While the political representation of women in the parliament has been celebrated (Mujeres, 2017), the evolution of political rights of women has not been accompanied by significant cultural transformations (Albaine, 2009). This lack of real participation and representation results in a “pongueaje politico” (Alejo, 2010), which refers to a colonial and patriarchal ideology, resulting in a form of " ‘political servitude’, either at the state or institutional level from civil society or through sponsorship, compadrazgo, etc” (p. 61). The concept originally referred to indigenous populations that would support a determined political party in exchange of holding a position or job in the government, but without any real decision-making power. It seemed that the same situation was being repeated by women in Bolivia.
When Ali talked about the political involvement of disabled women, she explained:
120 We have a population that has not been educated, a population that has not had
health, that has not had rehabilitation, that lacks so many things, therefore, so
easily manipulated. We have a population that for 20 pesos can be in favor of the
government or against it, or I don't know what, or I don't know how much. And
there is a lack of commitment and ... They say that poverty has the face of a
heretic.
(Tenemos una población que no ha sido educada, una población que no ha tenido
salud, que no ha tenido rehabilitación, que carece de tantas cosas, por lo tanto, tan
fácilmente manipulable. Tenemos una población que por 20 pesos se puede estar
a favor del gobierno o en contra, o no sé qué, o no sé cuánto. Y hay una falta de
compromiso y de…Dicen que la pobreza tiene cara de hereje.)
Ali made an important point regarding poverty and politics. Poor disabled women need to survive, and that leaves little space to embrace to any political commitment that does not result in a prompt reward. However, there are committed activist women that are not only establishing a political agenda, but they are elaborating actions towards their plans. Some of the examples that participants are doing include creating regional disability organizations.
Lily is dedicated to forming a national alliance to demand the government funding for a system of personal assistance for Independent Living (Gerben Dejong, 1979) accommodations for physically disabled people. She explained:
So, I want to create the personal assistant system here and have it paid by the
state, it has to be paid by the government, that's the way it is in those countries, in
all countries.
121 (Entonces yo quiero, crear aquí el sistema de asistente personal y que sea pagado
por el estado, tiene que ser pagado por el gobierno, así es en esos países, en todos
los países.)
She has already formed Independent Living movement associations in Sucre, La Paz,
Santa Cruz, and she is currently looking to organize one in Cochabamba. She is aware that before she dedicates all her time to the movement, she needs to retire. So, she is working towards a full retirement pension. In the same way, Rosi and Ali are working to create disabled women’s associations in other cities. A basic part of the political agenda for participants is to increase the participation of disabled women through associations.
Another issue that was constantly tackled by participants was a concern about the lack of data about violence and death of disabled people. Rosi explained:
They die in silence. Who will defend us? In silence, that's why there is a folk who
has died with large bedsores, can you imagine? I don't know if I have here, the
boy was really young, 24 years old. He had fallen from the second floor, working,
bricklayer. I believe that there should be someone to defend us. There is no one to
defend us. The federation nothing, nothing. But I say federation, federation, but
there should be a specific authority for that. For us to make our needs known and
the abuses there are. But who are we going to go to? Go to such a place, go to
such a place, so, between them they pass the ball. I have here, it's awesome. And
those things who sees it, who can. I don't understand, this little part.
(Se mueren en silencio. ¿Quién va a defendernos a nosotros? En silencio, por eso
hay un compañero que ha muerto con escaras grandes ¿te puedes imaginar? No sé
si tengo aquí, la verdad el chico era jovencito de 24 años. Se había caído del
122 segundo piso, trabajando, albañil. Yo creo que, en ahí, debería haber alguien que
nos defienda. No hay quien nos defienda. La federación nada, nada. Pero yo digo
federación, federación, pero debería haber una autoridad específica para eso. Para
que nosotros vayamos a hacer conocer nuestras necesidades y los abusos que hay.
Pero, a quién vamos a ir. Anda a tal lugar, anda a tal lugar, ósea entre ellos se
pasan la pelota. Yo tengo aquí, es impresionante. Y esas cosas quién lo ve, quién
lo puede. No entiendo yo, esta partecita.)
Rosi raised awareness on the lack of institutional support to defend disabled people from labor abuse. Even though disability federations exist, Rosi implied that they do not fulfill the role of defending disabled people and their rights. Data collection is fundamental to propose solutions to stop violence and discrimination. Not having statistics about this population contributes to its invisibility. Therefore, a step for disability justice includes demanding for research and data collection as a national policy regarding violence and femicides against disabled women. All participants were aware that numbers about femicides are unknown, but that they might be a reality. For instance, when asked about any case of femicide, Lily responded:
I don't think I've heard, che, I don't remember. I don't remember, just about abuse,
those things, but not about feminicide, no, I haven't heard. Maybe they won't say,
we don't know, maybe some women had disabilities and it is not known. That
would have to be analyzed.
(Creo que no he escuchado, che, no me acuerdo. No me acuerdo, sólo de
maltrato, esas cosas, pero no de feminicidio, no, no he escuchado. Talvez no
123 dirán, no sabemos, talvez algunas tienen discapacidad y no se sabe. Eso habría
que analizar.)
In a similar way, physical, psychological or sexual violence against disabled women is not documented. Most of the participants knew about abuse cases through media news, or friends. But there is no official data.
Finally, work inclusion has always been a part of the political agenda of disabled people in Bolivia (Díaz-Aristizabal et al., 2012). However, participants demonstrated that alternative economic paths are equally or more important for them. At least four of the participants are working within the informal economy sector, which is nothing to be surprised by, given that 60% of the Bolivian GDP is composed by informal economy
(Vargas & Fundación, 2011). When talking about the future of young disabled girls, Tori said:
I would tell the girls that they won't stay there. They can also move forward with
support and can be entrepreneurs, because the fact that they are like that, do not
think that they are going to stay that way, no because, now there is for school,
supposedly for them. I mean they can go out, it's not that difficult. The thing is to
want it and to do it. Put your effort and thrive, why should we stay there, and say I
cannot do it, because everything can be done, but with help. A support.
(Yo les diría a las niñas que no se quedarán ahí. También ellas pueden salir
adelante con un apoyo y pueden ser emprendedoras, porque el hecho que están
así, no piensen que ellas se van a quedar así, no porque, ahora ya hay para
colegio, dice para ellos. Ósea que pueden salir, no es tan difícil. La cosa es querer
124 y poder. Poner su empeño y más salir adelante, para qué quedarnos ahí, y decir no
puedo, porque todo se puede, pero con ayuda. Un apoyo.)
Tori recognized that undertaking a business is only possible with support and help from someone else. In her case, she runs a bakery entrepreneurship, but that was only possible, due to savings she had. Selling in the streets is a more commonly identified work for disabled people. However, it is not easy to do it. Rosi, who sells office materials at the door of a public hospital, earns just enough for her transportation, but she reports that she finds independence by doing it. Veridiana, who sells jewelry by catalog shares the same earning condition as Rosi. Mar and Delia make handcrafts that are sold to their friends and acquaintances.
c. Education
Education for disabled people in Bolivia is scarce. C.O.B.O.P.D.I. (2009) conducted qualitative research with 72 participants and revealed that 43% of their disabled participants were illiterate. Only 43% attended primary school, while only 14% had the opportunity and access to professional training, either at a technical or bachelor's level. The inaccessibility to technical-vocational training is mostly due to the low economic status of the family. Some of the participants came from rural provinces and, at the time, did not have access to primary education. Later research (Crespo Chuquimia,
2017), based on a national household survey, exposed that 31% of disabled people declared to have no level of education, compared to a 7% of the non-disabled Bolivian population.
Gender gaps are also significant within the disabled population. A total of 73% of disabled women have no more than primary level education, compared to 60% of
125 disabled men. The same pattern is repeated when addressing higher education. Disabled men who have access to this type of education represent 10.6% of all disabled men, and only 8.3% of disabled women receive higher education services. Celia was aware of this reality for many disabled women. She said: “Hay muchas mujeres, que, por falta de condición física, quedan en alfabetismo, por ejemplo” (Celia, 2019, p. 2).
Even though the National Constitution (Bolivia, 2009) guarantees free education and health services for all disabled people, more than half of the education centers for disabled children charge school pensions. As a result, education is not free for disabled people in this country (Crosso, 2014). Besides economic barriers, there are other factors that affect specifically disabled girls and women. Zapata, Contreras, and Kruger (2011) revealed that girls are less likely to be exclusively in school and more likely to work and go to school than boys. It was identified that “an adult family member other than the child’s parents in the household decreases the probability that a girl works” (Zapata et al.,
2011, p. 598). These results are not specifically focused on disability. However, disabled girls likely face this type of gender discrimination as well, so findings are pertinent for this analysis.
An issue that was raised by some of the participants when addressing disabled girls, women, and domestic work was abuse. Rosi shared her worry about intellectually disabled girls that are treated as domestic servants without economic compensation. A similar experience was exposed by Lily, she said:
That's right, I had a fellow woman who says, she tells me, well, I want to become
independent, I have my little money, she tells me, I can grab a credit, well, no.
How much do you have, 2 thousand tell me, 2 thousand dollars? No, 2 thousand
126 Bolivianos! What? 2 thousand Bolivianos! Yes. And where is your money? No,
my boss is grabbing it, my employer is grabbing it. Can you imagine, she didn't
even have cash, and the savings of her whole life, 2 thousand Bolivianos.
Edelweiss you would not believe it, she was 40 years old, 41. All her life, 50
Bolivianos paid her monthly, as her employee, and she still said, you should be
thankful, you are here. Notice, how serious, abusive. I wanted to go find that lady
to fight her.
(Así es, he tenido una compañera que dice, me dice pues, yo quiero
independizarme, tengo mi platita, me dice, puedo agarrar un anticrético, que bien,
no. Cuánto tienes, 2mil me dice, ¿2mil dólares?, no 2 mil bolivianos. ¿Qué?,
¡2mil bolivianos!, sí. Y ¿dónde está tu dinero?, no, mi jefa está agarrando, mi
patrona está agarrando. Imagínate, ni siquiera tenía efectivo, y el ahorro de toda
su vida, 2mil bolivianos. Edelweiss, no podía creerlo, tenía 40 y tantos años, 41.
Toda la vida, 50 bolivianos le pagaba mensual, como su empleada, y todavía le
decía, gracias a mí, estás aquí. Date cuenta, que grave, abusivos. Me daba ganas
de ir a buscar a esa señora para reñirle.)
In the previous case, the abusers were not the disabled woman’s family, but she had been living there since she was a girl, so it was like a home to her. Later in the interview, Lily explained that thanks to the woman’s involvement in a disability organization, she was able to move forward. She got married and lives outside that house.
There is legislature on inclusive education that aims to create a school environment that allows disabled children and young people to attend their local school and participate in all educational activities, including promoting curricular adaptation,
127 teaching methods, human resources, means and materials to improve educational quality for the development of the teaching and learning process in regular courses (Crosso,
2014). However, this attempt to achieve decolonizing education for Bolivia, including education for disabled children, has no practical results. There is no concrete definition or action plan to carry it out (Chihak, 2018). Ali lamented this situation. She said:
I think that at this time girls with disabilities, although in recent years there has
been a boost to education in our country, it is special education, unfortunately.
And not the inclusive education that allows students with disabilities to graduate.
Many times, deaf girls or boys are taken to special education when the courses are
colorful or with small animals and do not go high school. And when these
students with braille or JAWS or with so much technology can learn as any other
student, or deaf students with sign language. There is tremendous confusion in our
country in the difference that exists in special education, which should be a
resource center, and inclusive education, which is what really enhances education
in a general way. While these disadvantages exist, we cannot deny that in recent
years there is a greater presence of talking about the rights of students with
disabilities within the educational field.
(Yo pienso que en este momento las niñas con discapacidad, si bien en los últimos
años se ha hecho un impulso a la educación en nuestro país, es la educación
especial, lamentablemente. Y no así la educación inclusiva que permita que los
estudiantes con discapacidad puedan salir bachiller. Muchas veces a las niñas o
niños sordos los llevan a la educación especial cuando los cursos son de colorsitos
o animalitos y no salen bachiller. Y cuando estos estudiantes con el braille o el
128 JAWS o con tanta tecnología puede aprender que cualquier otro estudiante, o los
estudiantes sordos con la lengua de señas. Existe una tremenda confusión en
nuestro país en la diferencia que existe en la educación especial, que deberían ser
centro de recursos, y la educación inclusiva, que es lo que realmente potencia la
educación de manera general. Si bien existen estas desventajas, no podemos negar
que los últimos años existe una mayor presencia de hablar de los derechos de
estudiantes con discapacidad dentro del ámbito educativo.)
Ali recognized that the Bolivian government has intervened by imposing a model of special education, instead of inclusive education. According to Ali, this shift has negatively affected the situation of deaf students. She later asserted that currently, awareness of the rights of disabled students in Bolivian society is increasing. Few disabled girls get education, mostly because there are not inclusionary practices. Some of the participants are pioneers in obtaining education. However, there is no official data to document this fact. Andy explained:
If we go to public universities that have the obligation to facilitate the free entry
of students with disabilities to higher education, there is no data. They don't know
how many, what kind of disability, in what careers, etc. There is no data. When
there is no data and we talk about inclusion. We talk about exclusionary inclusion.
Because it is a speech exclusion. It is an inclusion of the mouth out, but we
continue to reproduce charity and continue to reproduce mechanisms of exclusion
and discrimination, especially with women with disabilities.
(Si vamos a las universidades públicas que tienen la obligación de facilitar el
ingreso libre de estudiantes con discapacidad a la educación superior, no existen
129 datos. No saben cuántas, que tipo de discapacidad, en qué carreras, etc. No existen
datos. Cuando no existen datos y hablamos de la inclusión. Hablamos de la
inclusión excluyente. Porque es una exclusión de discurso. Es una inclusión de la
boca para afuera, pero seguimos reproduciendo el asistencialismo y seguimos
reproduciendo mecanismos de exclusión y discriminación, sobre todo con mujeres
con discapacidad.)
Andy insisted on the importance of accurate data collection to address inclusive education. She asserts that the discursive level of inclusion is “de la boca para afuera,” which means that things are being said, but nothing is being done. Institutional support is scarce within the educational sector. Andy overcame infrastructural barriers at her school only through the active involvement of her parents in school directive decisions, as well as economic donations. The case of Nilo is similar. Education for her was only possible thanks to her mother, who would constantly complain to authorities. She demanded the necessary adjustments by negotiating with the school’s faculty and administration, as well as with the ministry of education. In fact, Nilo was the first disabled girl to study at
CEMA, finding an alternative to discriminatory traditional schools.
And, he asked me, do you want to study at CEMA? Since I was 13 years old, I
didn't understand what CEMA is. Then, she explained to me. CEMA is studying
at night, then. I, as I did not understand, as a minor, no. I imagined, oh, I can hide
at night. No one can discriminate against me, so I want to. And I said, yes I want
to enter CEMA, I want to study. Well, my mother went to talk to CEMA. In
CEMA they did not allowed me, because I was a minor, I had to be of legal age,
and that it was not always allowed. So, my mom went to the ministry of
130 education. They already knew me, from my previous technical school. And, the ministry of education, had checked on that before, and because it was not right.
They have to respect, because it couldn’t be possible that I had no grade. That's discrimination. And, the director escaped and escaped, so they finally fired him.
They have changed director, and the director said, she can continue, she can, she will not do 8th and 9th grade because we have to respect, but I didn't want to come back, I didn't want to. As they already knew me, they have already made me a letter of permission to CEMA. And as she has, she can enter, no matter how old, she can enter. And my mom presented the letter, and the principal could not do anything, he said, and now, what do we do, we will show all the teachers.
(Y, me preguntó, ¿quieres estudiar en CEMA? Como yo tenía 13 años de edad, no entendía qué es CEMA. Entonces, me explicó. CEMA es estudiar en la noche, pues. Yo, como no entendía, como menor de edad, no. ME imaginaba, ay, yo puedo ocultarme de noche. Nadie me puede discriminar, entonces yo quiero. Y le dije, sí quiero entrar en CEMA, yo quiero estudiar. Y bueno, mi madre va a hablar a CEMA. En CEMA no me han permitido, porque era menor de edad, tenía que ser mayor de edad, y también de que siempre, no estaba permitido. Entonces, mi mamá ha ido al ministerio de educación. Ellos ya me conocen, ya ha pasado, como del colegio técnico Uruguayo. Y, el ministerio de educación, más antes, ha ido y como no está bien. Tienen que respetar, porque no puede ser, una libreta que no tiene nota, no, no está bien. Eso es discriminación. Y, la directora se ha escapado y se ha escapado, entonces, ya, le han despedido. Ha cambiado de director, y el director decía, ella puede continuar, puede, no va a hacer como 1ro
131 medio, 2do medio, porque hay que respetar, pero yo no quería volver, no quería.
Como ellos ya me conocen, ya me han hecho una carta de permiso al CEMA. Y
como ella tiene, ella puede entrar como, no importa de la edad, puede entrar. Y mi
mamá ha presentado la carta, y el director no puede hacer nada, ha dicho, y ahora,
qué hacemos, vamos a mostrar a todos los docentes.)
There are several important aspects that Nilo presented. First, she talked about the relation between attending a night school and hiding to avoid discrimination. Second, she addressed the many times her mother presented demands at the education ministry. She mentioned that she was already known at the education ministry, as she had presented a previous case with her former school, where the principal refused to provide Nilo with her school year grades. Nilo’s mother’s complaints were taken seriously as the school principal was later expelled and replaced. She processed a special permission to let Nilo study at CEMA even though she was younger than the minimal allowed age. Third, Nilo and her mother do not only intervene at the governmental level, but also within the school. Once she had an order from the ministry, the CEMA director has nothing else to do, but to inform all professors about Nilo and possible adjustments to do.
Nilo was the first hearing disabled person to graduate from the Normal, which is the institution to educate teachers. And this was also a struggle for her and her mother, who went to the ministry of education, once more, to ensure that she would have accommodations. And when Nilo was ready to leave school, her mother motivated her by repeating that she was going to be the first disabled woman to graduate and so, she would be an example for future disabled students.
132 We were four. We started, we had to enter four, but two have escaped. They are
gone, out of fear. And one of them was my brother, my brother also has hearing
impairment, he has it, like me. I have entered.
(Había cuatro. Hemos empezado, teníamos que entrar cuatro, pero dos se han
escapado. Se han ido, por miedo. Y uno, era mi hermano, mi hermano también
tiene deficiencia auditiva, tiene como yo. Yo he entrado.)
It is hard to know about how many other students with hearing impairment graduated from the Normal. But, at least in her cohort, Nilo was the only person who finished her studies at this institution.
Another clear example of the important role that families play while reclaiming adjustments is the case of Andy, who is not quite aware of the influence her parents had in the processes of inclusion through her education. This is an example of how economic and social privilege creates opportunities.
I have been surrounded by people who have adapted very well to my disability,
and to what I needed. Not that they have adapted themselves, but they have
adapted everything around, so that I can feel comfortable. In the school, for
example, although it was a two-floors school, they tried, well, first, if there were
places where there was a little step, ramps were put in, but it wasn't just the
school. It was also the family that had to support and contribute and all that,
because at that time, it was not a priority issue, it was not spoken and if in any
educational institution, a child with disability arrived, they were not yet accepted.
Those children had to receive education in their homes, or so, those who could,
and those who could not, then, did not receive any education. In my case, at
133 school, they put some ramps and what they tried to do is that my class, every year,
would be in the first floor, I was in the same school every year, so that I could
have access.
(Me ha tocado estar rodeada de personas que se han adaptado muy bien a mi
discapacidad, y a lo que yo necesitaba. No es que se hayan adaptado, ellos han
adaptado todo para que yo pueda sentirme cómoda. En el colegio, por ejemplo, si
bien, era un colegio de dos pisos, ellos intentaban, bueno, primero, si había
lugares donde había una gradita, se pusieron rampas, pero no simplemente fue el
colegio. También fue la familia que tuvo que apoyar y aportar y todo eso, porque
en ese entonces, no era un tema prioritario, no se hablaba y si en alguna
institución, una unidad educativa llegaba un niño cd, todavía no se los aceptaba.
Esos niños tenían que recibir educación en sus casas, o así, los que podían, y los
que no, pues, no recibían educación. En mi caso, en el colegio, si se pusieron
algunas rampas y lo que intentaban hacer es que mi curso, cada año, sea, yo
estuve todos los años de colegio en el mismo colegio, que mi curso siempre sea en
la planta baja, para que yo pueda tener acceso.)
Even though there are public policies about inclusion, it is important to note how
Andy declared that in the past, disabled children were not accepted into certain schools and that at the present moment things have changed. However, there is no evidence to prove that educational discrimination towards disabled children is over in Bolivia. In fact, institutionalized discrimination was experienced by Veri, who was not allowed to sign up for school. She described:
134 In two schools, I have been in an elementary school only, it was just good because, sometimes even when I was in high school, I have been through the problem that they did not want to receive me at school. Because they said teachers didn't know how to deal with me. And I could have easily, started a legal process against them. I could have even gone to SEDUCA, making a complaint, but I said, it will be a lot of trouble, I will have to wait to what happens. Also, if I had done that, the environment where I was going to study would have been very tense. Like a little awkward, but that’s why I didn't do it. But then they changed to another director, and she just received me. Because I had more knowledge too, so that's why I entered high school at Bolivia High School, which is a very good school, really. It has very good education.
(En dos colegios, he estado en un colegio de sólo primaria, ahí bien nomás porque, incluso a veces ya cuando estaba en secundaria, he pasado por el problema que no me querían recibir en el colegio. Porque dice que no sabían cómo tratar, los profesores, conmigo. Y fácilmente, se podía hacer un proceso.
Incluso ir hasta SEDUCA, hacer una denuncia, pero yo dije, va a ser mucho problema, haber esperaré qué pasa y. Es que también, si yo iba a hacer eso, iba a ser bien tenso el ambiente donde yo iba a estar. Como que un poco incómodo, pero eso no me animé. Pero ya luego se cambió, otra directora, y recién me recibió. Porque tenía más conocimientos también, entonces fue por eso que ingresé a la secundaria al liceo Bolivia, que es un colegio muy bueno, la verdad.
Tiene muy buena enseñanza.)
135 Veri had access, in her words, to high quality education. However, this access was only possible, due to the change of authorities. First, she was not able to get into that school because the school principal refused to teach disabled children. Even though suing the school was an option, she decided not to do it because treatment in the school would be too awkward. Besides institutional barriers to education, teachers and professors are a barrier that participants have faced. Veri continued:
It has been a bit complicated because there is no such support, or at least, that will
force from the teachers, in the school, there is no such will force to teach. Take
that time to indicate, explain, all they say is, and now, what do I do with you. I
have always heard that. Yes, we have had, I have had support in the disability
institution where I lived, they gave us teachers who followed us, who sent us from
the institute to the school. Because if teachers there from the school did not make
the minimum effort. Always, I have come across that. Now, in the institute that I
am studying, I have seen, I have realized, that for example, the head of the
department had told all the teachers, there is a student who is blind, so they
already had that information. For example, they told me, I know I have a blind
student, yes, me. Let's see how to work with you, then, ok. They have more
predisposition. I've noticed now, but in all the places I've studied, I've always
been told, and now what do I do with you.
(Ha sido un poco complicado porque no hay ese apoyo, o por lo menos, esa
voluntad de los profesores, en el colegio, no hay esa voluntad para enseñar. Que
se tomen ese tiempo de indicar, explicar, lo único que dicen es, y ahora, qué hago
contigo. Siempre he escuchado eso. Sí hemos tenido, yo he tenido apoyo en
136 instituto donde estaba internada, nos daban profesores que nos hacían
seguimiento, que nos mandaban del instituto al colegio. Más bien, porque si no
los profesores de ahí del colegio no hacían el mínimo esfuerzo. Siempre, he
topado con eso. Ahora, en el instituto que estoy estudiando, he visto, me he dado
cuenta, que por ejemplo, la jefa de la carrera, les había dicho a todos los docentes,
hay una estudiante que es no vidente, entonces ellos ya tenían esa información.
Por ejemplo, me decía, sé que tengo una estudiante no vidente, sí, yo. Vamos a
ver cómo trabajar contigo, entonces, ya. Tienen más predisposición. Me he dado
cuenta ahora, pero en todos los lugares que he estudiado, siempre me han dicho, y
ahora qué hago contigo.)
The question “y ahora, ¿qué hago contigo?” is another way to establish that the person is a burden, as if she did not belong in that place. Accommodations in educational institutions are still rare and not all teachers aware of how to create material for disabled children.
In many cases, access to higher education is only possible if working at the same time. Kari started working when she was a child and she had to keep on working when she decided to enter the university because she needed the money for school materials.
Even though the Bolivian public university costs only $4 yearly (the legal minimum year income is approximately $304), Kari still needed support for books and transport. Veri shared a similar experience. Although as she does not have a family, she could not negotiate her time to work and study. Therefore, she had to wait at least three years to save money to study. She could not enter the public university because the study schedule did not let her work. She said:
137 Now I did think about going to the university, to San Simón, but it takes a lot of
time, because the schedules are very scattered. Let's say, they pass classes from 7
to 11 and there they have a bridge, until 1, 4, or 5. So, I can't wait that long. I
needed something that gave me part time to work, part time to study.
(Ahora yo sí, pensaba entrar a la universidad, a la San Simón, pero, requiere de
mucho tiempo, porque los horarios son muy dispersados. Digamos, pasan clases
de 7 a 11 y ahí tienen puente, hasta la, 1 o 4, o 5. Entonces yo no puedo esperar
tanto. Yo necesitaba algo que me de medio tiempo para trabajar, medio tiempo
para estudiar.)
As a solution to her problem with the schedule, she decided to enter a private educational institution that only had classes during morning. In that way, she could work every afternoon. Finding solutions, and alternative, as well as strategies to thrive are some of the elections these activist women made during their educational processes. One of the strategies Ali and Veri talked about was using the internet as a support, for the learnt information content. Ali explained:
I think that young women have much greater access to information than we had
accessed in our teenage years. They have much more information, many more
possibilities, etc. I remember that when I was in college, we bought photocopies
that our teachers made. So, we couldn't even imagine having a book, one of the
books. Instead, now you have what you want, good and bad on the internet. So,
it's not the same.
(Pienso que las jóvenes tienen acceso mucho mayor información de la que
nosotros hemos accedido en nuestras épocas de adolescencia. Ellas tienen mucha
138 más información, muchas más posibilidades, etc. Yo me acuerdo que cuando
estaba en la universidad comprábamos policopiados que hacían nuestros docentes.
Ósea no podíamos ni imaginarnos tener un libro, uno de los libros. En cambio,
ahora tienes lo que quieras, bueno y malo dentro del internet. Entonces no es lo
mismo.)
She emphasized the opportunities that youth have with new technology. For instance,
Nilo who is, at least, a decade younger than Ali, explained how important the internet was for her educational development during school and university. She said:
As I have studied to be a teacher, I have already found strategies. Before I
couldn't, it was my difficulty as well. But when I learnt how to study, how to have
time, say, with the teacher, he speaks and I do not understand him, but he has
written the subject on self-esteem, and if I do not understand what the teacher is
talking, but the key is self-esteem, then I went to the internet to find out a lot of
information on self-esteem. Self-esteem is this, such. And the test is good. And he
asks me where did you learn? And, I had not learnt from the teacher because I
didn’t understand what he was saying. I had a poor hearing aid device. And now, I
just have new headphones. Before it was an analog hearing aid, it's like, say, the
cell phone, before it was like that, with a button, you don't see. And now with
Tablet, it has changed, right? The same with hearing aid devices. Before, my
analog headset was very bad. And it had one channel and this one has 16
channels. So, it allows me more.
(Como yo he estudiado en la normal, ya he encontrado estrategias. Antes no
podía, era mi dificultad, así. Pero cuando he aprendido cómo estudiar, cómo tener
139 tiempo, digamos, con el docente, habla, no le entiendo, pero ha puesto el tema
autoestima, y si hablando, no le entiendo al docente, pero la clave es autoestima,
entonces fui al internet a averiguar mucho de autoestima. Autoestima es esto, tal.
Y el examen doy bien. Y me pregunta de dónde has aprendido, del docente, yo no
he entendido nada del docente porque, yo tenía audífono muy escaso. Y ahora,
recién tengo nuevos audífonos. Antes era audífono analógico, es como, digamos,
el celular, antes era así, con botón, no ve. Y ahora con Tablet, ha cambiado, nove.
Lo mismo que audífono. Antes mi audífono analógico era muy malo. Y tenía un
canal y esto tiene 16 canales. Ósea me permite más.)
Besides recognizing that the internet is an important educational tool, Nilo asserted that her modern hearing aid device makes a great difference for learning. However, the cost difference between a high-quality hearing device and access to internet is enormous.
Revealing disability status is a decision that women have to make. When asked about disclosing (Lyons, Volpone, Wessel, & Alonso, 2017) her disability to all of her professors at the university, Nilo said:
When they discriminated against me so bad, very strongly, I didn't want to show
much of my disability. I wanted to show myself as a normal person. I was going
to the Catholic university, as a normal person, but then, I thought it is better to
show, let them know. But, carefully, for example, the scrubbed teacher, I told
him, I read the lips, I have hearing impairment. Ah, now (turns around) he
followed the class like this. And another teacher, on radio class, he first graded
me badly, because SECRAD (disability services) had already warned him, and he
looks at me, oh, she can't do it, like that. And I don't want to say anything, I have
140 a deficiency, nothing. Only, I comply, I comply, I comply, and he asked me, who helped you edit the radio news, news, who helped you? I said, nobody, I did it alone. I have listened and nobody helped me. It is much better than my analog hearing aid, which was not good and it hurt my ear. I didn't want to have a disability card. And my mother told me, take out a disability card. And I was like, no, I don't like it, I have been discriminated against a lot. And she told me, you will have support, benefits.. And, I didn’t want. As part of the hypoacoustic association, they told me, better, if everyone has the same. And I, I just accepted.
(Cuando me discriminaban fuerte, muy fuerte, yo no quería mucho mostrar de discapacidad. Quería mostrar como persona normal. Iba a la Católica, como persona normal, pero luego, he pensado mejor mostrar, que sepan. Pero, con cuidado, por ejemplo, el docente fregado, yo le decía, yo leo los labios, tengo deficiencia auditiva. Ah, ya (se da la vuelta) así. Y otro docente, de radio, al principio me calificaba mal, porque ya le han avisado, SECRAD le ha avisado, y me miro, ah no puede, así. Y yo no quiero decir nada, que tengo deficiencia, nada.
Sólo, ah, ya gracias, ya. Cumplo, cumplo, cumplo y me preguntó, quién te ha ayudado a editar de la radio, como noticia, noticiero, quién te ha ayudado, le dije, nadie, yo solita. He escuchado y nadie me ha ayudado. Es mucho mejor que mi audífono analógico, es malo y hace daño. No quería tener carnet de discapacidad.
Este es. Y mi mamá me decía, saca carnet de discapacidad. Y yo, no, no me gusta, mucho me han discriminado. Y me decía, vas a tener como apoyo, beneficios, saca. Y, yo, no quiero, no quiero. Cuando ya estoy en la asociación de hipoacústicos, me dijeron, mejor, sacar todos igual. Y yo, recién he aceptado.)
141 Nilo said that she chooses not to confront professors, who do not provide initial support.
She explained that it is not worth spending the time explaining if professors are not willing to acknowledge their ignorance on the disability topic. Hiding their disability is a strategy to navigate education institutions. Kari decided not to reveal her disability. She explained:
Ucha, I can tell you the latest. Because the previous thing to the university, and in
part of the university, has been normal, of course nobody knew that I had
disability, nor have I showed it. I have spread it, I will say. So, they treated me
normal, only that I found ways to copy from the board, take the exam, listen,
because sometimes I didn't listen well, as I couldn't ask, I was also shy, on that
part. So, I guessed, and then my friends, I just asked them, or books, books have
helped me so much. And after learning about disability, it is something that I did
not like, that the same people with disabilities tell me, I hope you are not be going
to college and passing the classes out of pity, it is like most of them have
approved their classes out of pity. But not me. I have struggled much, so when I
see my curriculum or see everything that I have done, being a teaching assistant
and stuff. I say I have earned this, I have not achieved it out of pity. Of course,
sometimes, I had some influences (laughs), because the director was my friend,
like that, but so, now, director, here are my papers, like this. No, well, and the
merit test is where I've done it, no. But, not out of pity.
(Ucha, te puedo decir lo último. Porque lo anterior a la universidad, y en parte de
la universidad, ha sido normal, claro que nadie sabía que yo tenía discapacidad,
tampoco lo he emitido. Lo he difundido, diré. Entonces, me trataban normal, sólo
142 que me daba modos para poder copiar de la pizarra, dar el examen, escuchar,
porque sí algunas veces, no escuchaba bien, como no podía preguntar, era
también pues, tímida, por esa parte. Entonces, adivinaba, ya después a mis
amigas, nomás les preguntaba, o los libros, no, los libros me han ayudado harto
también. Y ya después de saber de la discapacidad, es algo que no me ha gustado,
que las mismas personas con discapacidad me dicen, no estarás yendo a la
universidad y aprobar por pena, es como que la mayoría ha aprobado por pena.
Pero yo no. Yo me he esforzado harto, por eso, cuando veo mi currículo o veo a
todo lo que he llegado, ser auxiliar de docencia y esas cosas. Digo que lo ha
ganado, no lo he logrado por pena. Claro que algunas veces, sí lo he logrado con
muñeca yajja, porque el director era mi amigo, así, pero así, ya pues director, aquí
están mis papeles, así. No pues, y el examen de méritos es donde yo lo he hecho,
no. Pero, no por pena.)
Kari hid her disability from professors and friends, because she could find the support she needed in books and friends who would repeat some lessons and clarify questions that she had. What surprised Kari the most was that once she declared her disability, other disabled friends assumed she was passing her classes out of pity, as if that was a common experience amongst disabled students. She emphasized that all her achievements were a result of her own effort.
d. Economy
As with other aspects regarding inclusion, Bolivia has a wide range of laws that protect and promote equality and equal opportunities, in relation to the right to work of persons with disabilities. However, data from the National Statistics Institute Household
143 Survey indicate that unemployment in this sector reaches around 80 and 85 percent
(Barroso, 2018). The supreme Decree 27477 regulates and protects the incorporation, promotion and job stability of persons with disabilities, establishing work preference and providing that public institutions have the obligation to hire an average of 4% of workers with disabilities from their total staff. They must also create conditions for the performance of these workers. However, formal labor insertion is limited because the greatest contribution to the generation of employment in Bolivia corresponds to the family and micro business sector, generally located in the informal sector.
In addition, there is a lack of sustained training and labor insertion programs
(C.O.B.O.P.D.I., 2009). This can be reflected in the lack of disability accommodations in formal jobs. For example, Lily explained:
Me at work, very difficult. Look, Edel, I work continuous hours. I go to work at 8,
7:30, 8:30 I go to work. For lack of taxi, because it is rush hour, there is no taxi,
when it’s late. Two hours we have for lunch and I stay for lunch there. I am sitting
from 8 in the morning until 8 at night. My ass hurt, my back hurt. I get off work
feeling bad, my body can no longer resist. At times, I want to encourage myself to
tell the boss, equal conditions mean that I could work part-time, nine. Or
continuous schedule, because of my condition. Or something else, in the NGO I
worked for the British, they put a bed in a room for me, it didn't hurt anymore. I
went to lie there, I rested my ass, I rubbed my back, I slept for a while, something,
and then I was ready to go. I could perform even more. But, that does not happen
in my current job. At times, I am afraid to ask, and at times, I do not think they
will listen to me, as if I lost credibility, say, I do not think they will give me. And
144 as I know, also that I will be working for a short time. So, like I don't demand too much. But we are not in equal conditions, so every job there is, it’s well suffered.
And for people with very serious disabilities, who cannot move their hands, there is no work. Definitely no work, so literal. Worse for intellectual disability, they have many cases at the human rights defensory.
(Yo en el trabajo, bien difícil. Mira, Edel, yo trabajo horario continuo. Yo voy a las 8 a mi trabajo, 7:30, 8:30 entro al trabajo. Por falta de taxi, porque es hora pico, no hay taxi, tardo. Dos horitas tenemos en el almuerzo y yo me quedo a almorzar allá. Estoy sentada de 8 de la mañana hasta las 8 de la noche. Mi cola dolida, mi espalda dolida. Salgo mal, ya no da mi cuerpo. A ratos, quiero animarme a decirle a la, una igualdad de condiciones sería que yo podría trabajar medio tiempo, nove. O sino horario continuo, por mi condición. O sino, en la
ONG que trabajaba de los británicos, me los han puesto una cama en un cuarto entonces, ya no me dolía. Iba a echarme ahí, hago descansar mi colita, me fricciono mi espalda, duermo un ratito, algo, y ya después estoy pilas. Puedo rendir más todavía. Pero, eso no se da en la defensoría. A ratos, me da miedo pedir, y a ratos, no creo que me hagan, como que he perdido la credibilidad, digamos, no creo que me den. Y como sé, también que estoy poco tiempo.
Entonces, como que no exijo también. Pero no estamos en igualdad de condiciones, así que cada trabajo que hay, es bien sufrido. Y a personas con discapacidad muy grave, que no pueden mover ni las manos, no hay trabajo.
Definitivo no hay trabajo, así literal. Peor para discapacidad intelectual, harto tienen la defensoría.)
145 Lily admitted that she feels afraid to ask for accommodations, so she prefers to stay quiet about it. She is one of the few people who experienced what it is like working with disability accommodations. Unfortunately, later in the interview, she said that the British
NGO that she worked for had left the country. Workplaces like the one she described are rare. Lily was worried about how trying to accomplish all of her tasks at work may have been harming her body. Besides, she felt that her co-workers might get jealous or feel envious if she works fewer hours. This kind of resentment of disabled people was found by Soldatic (2018), who framed it as a mechanism of social and political oppression exerted by the neoliberal State.
The stereotypes and discriminatory attitudes of employers and workers is one barrier that was found by Barroso (2018), who conducted a social experiment to measure discrimination practices in hiring processes of the private sector. He concluded that disabled people are still strongly discriminated against, based on their disability condition. Not surprisingly, women are the most affected. For example, even if disabled women had significant previous experience, they would not be called for an interview.
This context may explain why some of the participants found alternative ways to make money without being hired in the formal sector. For instance, Mar, who works as a secretary in the disability office, explained that the money she earned there was not enough to maintain her and her son, so, she would make handcrafts and sell them to people she knew. Similarly, Delia said:
I worked, so I could access a disability retirement income, I have the income of
the taxes, with that I am living. I make crafts, I'm very good at crafts. And for
146 example, I start working full, from September to December, because it's the
strong season.
(Yo trabajaba, entonces me alcanzo para una renta de invalidez, tengo la renta de
las AFPs, con eso estoy. Hago manualidades, soy muy buena para la manualidad.
Y por ejemplo, yo comienzo a trabajar full desde septiembre para diciembre,
porque es la época fuerte.)
Both cases are from women who had access to formal jobs, but still needed to find alternatives to pay their bills. On the contrary, Tori never had a formal job. She started working by cleaning houses and then she learnt how to bake. Finally, she started her own business. She explained:
I work, thank God, I work because I have learned baking while being a healthy
person. And for which, this work has led me to get ahead, because if I had not had
this job, I, imagine that I would have been in the worst. Asking for help, perhaps
my children would have been working, would not have studied, would have been
the worst. But, thank God, I've always had that intelligence, this ability, my
entrepreneurship, I don't work with anyone else.
(Yo trabajo, gracias a dios, me trabajo porque yo he aprendido la repostería
estando una persona sanita. Y por el cual este trabajo me ha llevado a salir
adelante, porque si no hubiese tenido este trabajo, me imagino que hubiera estado
en la peor. Pidiendo ayuda, quizá a mis hijos hubieran estado trabajando, no
hubieran estudiado, hubieran sido de lo peor. Pero, gracias a dios, siempre lo he
tenido esa inteligencia, esa, esto de desenvolverme, mi emprendimiento, no
trabajo con nadie más.)
147 Again, just like Delia and Mar, Tori worked to support her children. She is aware that education is important for her children to get future jobs, as she does not want them to live the same way she did. Economically surviving means having to change constantly from one economic activity to another. Innovation is key. For example, Luci makes
Christmas cards every October and is looking to learn how to make Christmas dolls to have extra earnings. She explained:
Usually for Christmas, I always do an extra thing. I used to sell Christmas cards
by catalog. That time, sell was kind of good, and then I wanted to start making
Christmas dolls, so now a fellow woman will teach me. I like that.
(Por lo general para navidad, siempre hago una cosa extra. Vendía tarjetas por
catálogo. Esa vez, ya me ha ido más o menos, y luego estaba queriendo
incursionar con los muñecos de navidad, pero ahora tengo una compañera que me
va a enseñar. Me gusta eso.)
Some of the participants are entrepreneurs. Even if they were allowed to enter the formal job market, Celia decided to do her own social entrepreneurship, as she explained that having a formal job would mean that she would have to work eight hours every day. Her disability, however, would not allow her to persist in that work. She said:
Labor inclusion, the same. I gave my 200%, but the work would put me through
thousands of delimitating barriers. Throughout that stage, I have been growing
with my life experiences. Obstacles, successes, everything. Until in the end I said,
well, I'm professional and I have to do something else. I have made the decision
to open a disability organization. I started to have epilepsy last year, a disability
that I did not have, but it has come to complement my cerebral palsy. So, I cannot
148 work 8 hours, and the organization benefits me in that I develop other capacities,
that of supporting people, being a leader, as you tell me, pushing there, coming
here, moving like this.
(La inclusión laboral, lo mismo. Yo daba mis 200%, pero el trabajo me ponía
miles de barreras, y delimitantes. Durante toda esa etapa, me he ido formando con
mis experiencias de vida. Obstáculos, aciertos, de todo. Hasta que al final dije,
bueno, soy profesional y tengo que hacer otra cosa. He tomado la decisión de
abrir, mi grupo de discapacidad. Es empecé el año pasado, a tener la epilepsia,
una discapacidad que no la tenía, pero ha venido a complementar la parálisis
cerebral. Entonces, eso me impide ya a trabajar las 8 horas, y me beneficia en que
desarrollo otras capacidades, el de apoyar a la gente, el ser líder, como tú me
dices, empujar allá, venir aquí, ósea moverme. Moverme, entonces así.)
She is looking to contribute to disability justice actions through economic empowerment.
Her focus on making handcrafts is to show the capacities of people with cerebral palsy.
Yet, she recognized that it’s not always easy. Another example is the experience of Veri, who is blind and sells jewelry by catalog. This means that she walks all afternoon around the city visiting offices and offering her products. The streets’ conditions in her city are bad, which contributes to the disabling barriers for her visual impairment. Her income is not fixed and it changes every month, depending on the level of her sales. This is one of the problems of working in the informal sector. Veri explained that the money she makes is barely enough to get by:
149 According to sales, if I sell, yes. It doesn’t give me much to save, but it does give
me at least to survive the day, at least, something is something. That, in the
economic aspect, they give us a certain amount, but then there is no support.
(De acuerdo a las ventas, si vendo, sí. Tampoco no me dan mucho para ahorrar,
pero sí me da por lo menos para subsistir el día, por lo menos, algo es algo. Eso,
el aspecto económico, nos dan cierta cantidad, pero después no hay ningún
apoyo.)
As Veri explained, blind people in Bolivia receive a stipend, which helps with some of the economic problems that some people face. People with other impairments receive another stipend to support disability expenses, which are costly. Nilo described how much money she spends on her hearing aid device:
Let’s say, there is work, but there is not enough, because hearing aid are
expensive, batteries are expensive. Calibration, expensive too, everything is
expensive. If a normal person doesn't have any of that, he has nothing, that's fine.
He does not spend, but with deficiency, indeed, he needs more, because each one
costs 15 thousand, 15 thousand, 30 thousand bolivianos. It is very expensive, but
other people told me, but it is very expensive, what is it for? You shouldn’t buy.
And I told him, oh, you don't understand, if I use an analog headset, I'm not going
to understand you, I'm not going to listen to radio, telephone, anything. But they
don't understand how they work, they don't understand. But I need it. And it's
worth it.
(Digamos, si hay trabajo, pero no hay suficiente, porque audífono cuesta caro,
pilas, cuesta caro. Calibración, caro también, todo cuesta caro. Si una persona
150 normal no tiene nada de eso, no tiene nada, está bien. No gasta, pero con
deficiencia, efectivamente, necesita más, porque cada uno cuesta 15 mil, 15 mil,
30 mil. Es muy caro, pero otras personas me decían, pero muy caro, para qué, en
vano compras. Y yo le he dicho, ay, no entiendes, si yo uso audífono analógico,
no te voy a entender, no voy a escuchar radio, teléfono, nada. Pero, no entienden
cómo se usan, no entienden. Pero yo necesito. Y vale la pena.)
In a similar way, Kari is vexed when she figured out how much money she spends on medication. Mainly because she realized that even though she works a lot, it is not enough to cover all of her expenses to care for herself. She chose to ignore some discomforts by giving priority to certain parts of her body. She explained that, right now, she could only take care of her eyes, ears, and knees. She described:
I spend almost everything; I still have a thousand to live. And I tell you that
recently, I have been feeling my knees hurt, a kind of rheumatism has come to me
that the doctor says is not, he has prescribed some ‘rheumatolaflex’ sachets, that
each sachet costs 17 Bolivians, which make about 540 like this, more or less.
(Gasto casi todo, me queda como mil nomás para ya vivir. Y te cuento que recién,
he estado mal de las rodillas, me ha venido una especie de reumatismo que el
doctor dice que no es, me ha recetado unos sobrecitos ‘reumatolaflex’, que cada
sobrecito cuesta 17 bolivianos, que hacen como 540 así, más o menos.)
Another example that demonstrates the high level of expenses that people with disabilities face was provided by Lily, who described how she would only work to pay for her diapers at some point, she said:
151 The diaper, I wear two diapers in the day and an adult diaper at night. Like 10, 45
per day, only in these things. I have not made a budget calculation of how much I
spend per month. I could not tell you, but much of my little money goes there.
There has been a time when I have only worked for my diapers, and for my
health. At least, now in my job I can save something, because the situation is
better, I earn well enough.
(El pañal, uso dos pañales en el día y un pañal de adulto en la noche. Como 10
otros 45 por día, solo en estas cosas. No he hecho un cálculo presupuestario de
cuánto gasto al mes. No te podría decir, pero se va mucha de mi platita se va ahí.
Ha habido un tiempo en cual sólo he trabajado para mis pañales, y para mi salud.
Por lo menos, ahora en la defensoría ya ahorro algo, porque está mejor la
situación, gano bien nomás.)
Lack of sufficient income creates economic dependency. As a result, women have to stay in their houses, without access to study or socialize as Ali explained:
I believe that one as a woman with a disability faces many more barriers. There is
no money for transportation, we don't go out. In this city, we don´t have
accessible public transport. The transport that exists in our city is not for us, so we
use taxis and the taxi is incredibly more expensive if they see you with a
wheelchair. There are many conditions of poverty, lack of resources, etc. That
makes it really hard to get out of your house. If there is no one available, your
mother, your father, your son who can accompany you, you are left without going
to your meeting, no matter how much you die of desire, even if you are aware,
many limitations that have to do with lack of resources.
152 (Yo creo que una, la mujer con discapacidad cruza o se enfrenta con muchas más barreras. No hay plata para el transporte, no salimos. No tenemos en CBBA en transporte público accesible. El transporte que existe en nuestra ciudad, no es para nosotras, de tal manera que usamos taxi y el taxi es increíblemente más caro si te ven con una silla de rueda. Hay muchas condicionantes de pobreza, de falta de recursos, etc. Que hace que se realmente se muy difícil salir de tu casa. Si no hay alguien disponible, tu madre, tu padre, tu hijo que te pueda acompañar te quedas sin ir a tu reunión, por más que te mueras de ganas, por más que estés consciente, se cruzan muchos limitantes que tienen que ver con la falta de recursos.)
Ali highlighted the importance of money for transportation. This issue can affect the self-image of women. For instance, Rosi, talked about the meaning of her work in the streets. When talking about the moment in which her husband stopped helping her with the setting of her street sales post, she said:
Yes, I said why he had to take out or put in my sell stand. I said, I came here to
physiotherapy and so I found this little place to sell. I grab my bags here and that's
it. I grab a taxi and I'm here. Grab here, I lift this, put it in my chair and I'm at my
house. I mean that is, that a woman prevails what I could, but nevertheless
sometimes if I depend from him, that he must give me, if I don't move. However,
thank God, I have overcome this barrier. It is not big, but it can cover my
transport expenses, it can cover my food. For me it is the best and not to depend
on extending my hand, to depend from someone. I have suffered a lot, and that is
missing for women, who are in their homes. They have all those barriers, they
say, oh and without him I will not be able or who will give me the food, or
153 money. Women are missing someone who teaches them their rights.To show
them that women with disabilities can move forward.
(Sí, yo decía porque él tenía que sacar o meter mi puesto. Yo dije, vine aquí a la
fisioterapia y así encontré este lugarcito para poder vender. Agarro mis bolsas
aquí adelante y ya está. Agarro taxi y ya estoy aquí. Agarra aquí, me pongo, me
cargo y estoy en mi casa. Ósea eso es la, que una mujer prevalezca lo que pudiera,
pero sin embargo a veces si dependo, que me tiene que dar, si no me muevo. Sin
embargo, gracias a dios, he superado esta barrera. No es grande, pero sí me puede
cubrir mi pasaje, me puede cubrir mi comida. Para mí es lo máximo y no
depender de extender la mano, depender. Yo he sufrido harto, y eso les falta a las
mujeres, que están en sus casas. Tienen toda esa barrera, que dicen, ay sin él no
voy a poder o quién me va a dar el alimento, o platita. A una mujer le falta alguien
que le enseñe su derecho. Que le muestre que sí las mujeres con discapacidad
podemos salir adelante.)
Rosi was clear when addressing suffering as a result of staying at home, which is coherent with the obstacles women identified when talking about recruiting new disabled women members for their organization. Many disabled women stay home, and they do not participate in any social or civic activity. Both Rosi and Ali, talked about the city, but ignored the conditions in which disabled women in the rural area face. For instance, when talking about poverty, Mar highlighted that real poverty is situated in the rural area, and
Lily described that her heart is broken to think about the conditions in which disabled people in the rural area live.
154 Creating work opportunities is also reflected as part of the participants’ commitments to disability justice. In a similar way as Celia, who is in the process of creating economic gain from handcrafts that she and her organization make as a way to raise awareness about cerebral palsy, Ali decided to make a living while working in what she thinks deserves her whole attention and time. When talking passionately about her work, she said:
I am the executive director of the Institute of social medical research, which is an
institution that was born from the Universidad Mayor de San Simón in 2009, with
the first master's degree in management and attention to people with disabilities.
Then we became independent on 2013, now we are a civil society institution,
totally autonomous, we are specialists in research. We have done a national
investigation on the situation of the human rights of the people with disabilities in
Bolivia in 2013, we finished it in the year 2014. Precisely for that reason we did
that investigation for the universal periodic review so that the people with
disabilities participated in the construction of the shade or alternative report,
which is done. This year the following exam has been done for the EPU, but to
base our participation we conducted this research. That is why it promoted,
counted the people with disabilities, to organizations, this possibility that we have
to enforce our rights. We continue working in what is the academy, we work with
postgraduate programs. We already have the fifth version of the diploma in
community-based rehabilitation, courses in inclusive higher education, which is
still a great process, still. At this time with the UN, no no. With the World Health
Organization, we are currently conducting a training with an expert, who has
155 recently arrived, in community-based rehabilitation indicators, to make some baselines in four regions of the country. In Sacaba, in CBBA, in San Ignacio de
Velasco, Santa Cruz, in Guacareta or Monteagudo in Sucre and in Torno or
Cabezas in Santa Cruz to see how these projects impact, community-based rehabilitation programs in the life of the people with disability and in what extent this strategy is capable of transforming these lives.
(Yo soy directora ejecutiva del Instituto de investigaciones médicas sociales, que es una institución que hemos nacido desde la Universidad Mayor de San Simón en el año 2009, con la primera maestría en gerencia y atención a personas con discapacidad. Luego nos independizamos ya por el año 2013, ahora somos una institución desde la sociedad civil totalmente autónoma, somos especialistas en investigación. Hemos hecho una investigación nacional sobre la situación de los derechos humanos de las personas con ddiscapacidad en Bolivia en el año 2013, la terminamos en el año 2014. Precisamente por eso hicimos esa investigación para el examen periódico universal para que las personas con discapacidad participaran en la construcción del informe sombre o alternativo, que se realiza.
Este año se ha hecho para el EPU, el siguiente examen, pero para fundamentar nuestra participación realizamos esta investigación. Por eso es que promovía, contaba las personas con discapacidad, a las organizaciones esta facilidad, esta posibilidad que tenemos para hacer respetar nuestros derechos. Seguimos nosotros trabajando en lo que es la academia, trabajamos con programas de postgrado.
Tenemos ya la quinta versión del diplomado en rehabilitación basada en la comunidad, cursos de educación inclusiva superior, que todavía es un gran
156 proceso, todavía. En este momento con la ONU, no no. Con la OMSS, con la
Organización Mundial de la Salud estamos en este momento realizando una
capacitación con un experto que ha llegado en indicadores de RBC, para hacer
unas líneas base en cuatro regiones del país. En Sacaba, en CBBA, en San Ignacio
de Velasco, Santa Cruz, en Guacareta o Monteagudo en Sucre y en el Torno o
Cabezas en Santa Cruz para ver de qué manera impactan estos proyectos,
programas de RBC en la vida de las pcd y en qué medida esta estrategia es capaz
de transformar estas vidas.)
Ali created the first social-medical research institute in the country. This is the academic component to her disability activism practices. The work she does is closely related to the work of international organizations such as the UN and the WHO, as well as international
NGO’s. Her scope of research reaches to multiple urban and rural communities. The discourse she used when talking about her experiences as a disabled person are completely framed under the global standards set by the Convention on the Rights of
People with Disabilities (CRPD). By creating the social research institute, Ali contributed to the creation of jobs for other people.
Activist disabled women are working toward disability justice from their own professional settings. Andy, who worked as the president of the city council, has made sure to give priority to the disability accessibility as one of the main duties for the local government. Lily had a politically driven goal to create a National disability office with budget from the central government. Fran was running for senator and she was advocating to place the disability sector needs as part of the agenda for other politicians.
157 Applying for the disability stipend is time consuming. This insight is important as time is a silent mechanism that often pushes people to quit trying to be part of welfare programs. Bodies are valued in terms of time – under neoliberal logic, disabled people are divided into those who are part time workers and those who are not able to work at all. The welfare system is based on “technologies of disability reclassification” (Soldatic,
2018), which produce a division between disabled people who are deserving of governmental funding, and the remainder of the group that is pushed into the labor market. In the Bolivian context, the medical classification depends on the level of impairment. Only people with severe and very severe impairments are eligible for the stipend. Ali explained:
The important thing to be able to receive the bonus is that you are in the group of
serious and very serious impairment, so, beyond 50 points of disability, and there
are other conditions. For example, if you are working you do not receive a bonus,
if you have a work source, etc. So, there are certain conditions for the bonus,
which have nothing to do with the types of disability.
(Lo importante para poder otorgar el bono es que estes dentro del grupo de grave
y muy grave, ósea más allá de los 50 puntos de discapacidad, y existen otras
condiciones más. Por ejemplo, si estás trabajando no recibes bono, si tienes una
fuente laboral, etc. O sea que hay ciertas condiciones para el bono, que no tienen
que ver con los tipos de discapacidad.)
But not every disabled person who should be categorized as severely or very severely impaired receives the monthly stipend. Only those who are registered, and in many cases people in the rural areas or people who do not have knowledge about it have no idea how
158 to register and get access to the disability benefits. Tori explained that only after 18 years of becoming a wheelchair user, she was informed by another physically impaired woman about the procedure to apply for the benefits. Disabled activists are all aware that the qualification metrics to decide if people deserve the stipend are not working well. For instance, Nilo explained her experiences when having the assessment to determine her level of impairment. She said:
The rating here is very bad. For example, before, from the beginning, like, my
first disability ID, before, 2000, I spoke. You can talk? Yes, do you read lips?
Yes, do you use a hearing aid? Yes, and do you listen better? Sort of, I only read
lips. How have you learned? She has taken me to speech therapy, there I have
learned to read lips, I have learned to vocalize, my mother has supported me a lot.
She has always supported me, always, until now. She does not get tired. And they
tell me, oh, that´s good, they gave me a small disability percentage. And a girl,
just like me, same impairment, just like that, but she was given 60 points, she has
told me that when they asked her, what's your name? (she did not answer, oh,
ugly, poor thing. So, and I say that it is unfair. It is unfair, they qualify poorly,
people who have money, they lower the disability points to them. But, it does not
anything to do with disability. It has to do with their deficiency, their difficulty.
From my association of hypoacusis, we have talked about how to get a disability
ID, because we already know how it is. Go with ugly, old and ugly clothes. Do
not tell the interviewer anything you know, just, I do not know and that´s it. Or
speaking in sign language, I went again, I was scared because I worked on tv
channel 4 as an interpreter, they know me there. My mother told me, just like that,
159 my friends of the hypoacoustic said the same to me. Already, and I've gone with glasses, I looked badly, disheveled, with a broken jacket, and ugly. And he said, what is your name? (did not respond), but what is your name? (did not respond) as
I didn´t do anything. your dad? (did not answer) and now, it is understood. Your mom? She already knew. So, I got 51 points.
(La calificación de aquí es muy mala. Por ejemplo, antes desde el principio, como, mi primer carnet, antes, 2000, yo hablaba. ¿Puedes hablar? Sí, ¿Lees los labios? Sí, ¿Usas audífono? Sí, y ¿escuchas mejor? Más o menos, sólo leo los labios. ¿Cómo has aprendido? Me ha llevado a terapia del lenguaje, ahí he aprendido a leer los labios, he aprendido a vocalizar, mucho me ha apoyado mi mamá. Siempre me ha apoyado, siempre, hasta ahora. No se cansa. Y ellos me dicen, que bien, me ha puesto un porcentaje bajito. Y no necesita, y yo, una chica, igualito que yo, igualito, pero a ella le ha sacado 60, ella me ha dicho, ¿cómo te llamas? (no responde, ay, feo, pobrecita. Así, y yo digo que injusto. Me dijo es injusto, califican mal, personas que tienen plata, les rebajan. Pero, no pues, no tiene que ver eso. Tiene que ver su deficiencia, dificultad. Tiene que ver. De mi asociación de hipoacústicos, hemos hablado cómo sacar, porque ya sabemos cómo es. Anda con ropa fea, viejito y feo. No le digas nada de qué sabes, sólo, no sé y listo. O hablando señas, he ido, me daba miedo. No, porque yo trabajaba en el canal 4 como intérprete, por ahí me conocen. Mi mamá me dijo, igual, así mis amigos del hipoacústico, me dijo igual. Ya, y he ido con lentes, así, mal veo, despeinada, con chamarra rota, y feo. Y me dijo, ¿cómo te llamas? (no responde), pero ¿cómo te llamas? (no responde) como que no puedo hacer nada. ¿tu papá?
160 (no responde) y ya, se entiende. ¿tu mamá? Ya escribía, mamá, así. Y ahí me he
sacado 51. Y ha llamado a mi mamá, no ella no, muy difícil consultarle, mejor a
su mamá. Ya, señora, mi mamá ya sabe, entonces.)
Nilo acknowledged that the system to categorize disabled people into groups does not work well. Her criticism comes from a medical approach. She does not recognize that her abilities to read lips, talk and access to hearing aid are elements that help her overcome social barriers, which makes sense because the government’s approach is twofold. It is medical as it focuses on the impairment as an individual experience, but it also takes into consideration social and economic aspects such as income and family support. Nilo’s disability organization shared some tactics to assure all members received a proper qualification to ensure their economic stipend. This strategy included dressing up with old clothes and avoiding any communication, almost as if members would want to cause pity. A similar situation happened to Celia when she was trying to obtain her disability ID. When asking her if she has the disability ID, she answered:
Yes, but with an incorrect rating. Look, when first time, when I started to qualify,
my rating was 82%, for cerebral palsy, and now that I also have epilepsy, as I was
telling you, I have dropped to 51%. A favor, they are doing me a favor.
(Sí, pero con una calificación incorrecta. Mira, cuando la primera vez, cuando
empecé a calificar, mi calificación era de 82%, por la parálisis cerebral, y ahora
que tengo la epilepsia, también, como te contaba, me han bajado a 51%. Un favor,
me están haciendo un favor.)
Almost all of the participants indicated that they had 51% of impairment. So, Celia’s reaction is not surprising. She expressed that she felt as if the government was doing her
161 a favor. Access to welfare implies dressing up as a poor person and not being able to show any capabilities. As Nilo expressed in one part of her interview, economic restraints affect disabled women, even if family support is present.
Poverty not only greatly affects the access to equal opportunities for disabled people, but it also contributes to the disablement and debilitation of people like Kari. She commented on the general lack of knowledge about blindness prevention in Bolivia. In fact, 80% of blindness cases are preventable by going to the ophthalmologist on time and having good food and hygiene (Pérez 2013). Kari became visually disabled when her pregnant mother had x-rays done to her. Her mom did not know about the dangers of x- rays during pregnancy. Kari was born with low vision and at the age of 11 she had an accident, as a result, she lost her right eye when she was 13 years old. She explained:
My family is made up of 5 members, my dad, my mom, my older brother, my
twin brother and me. So, the only women were my mom and me. We were going
out to sell very early, my dad was going to work, but sometimes he didn't feel like
giving money to my mom and it we felt that, we didn't have any medication, when
I started using glasses, I broke them, as a child playing, right? And my mom
bought a used pair of glasses in a flea market. And she told me, put this on, put
them on. Yes, I see, like this. And with that, I have made my eye worse. Because
of ignorance, because of poverty, also because she couldn't afford the doctor.
Over time, it has been improving a bit, and we have, not so, complicated things.
I've already lost an eye, my dad has taken a little, say, conscience. He said, we
will give her glasses, I did not have this eye´s prosthesis, so, until 2008, until my
22 years, we were still with very limited money, and my mom had to go to work
162 in the Yungas to earn 2000 pesos and came back once every two months. My dad
was gone, coming, leaving, like this. It was complicated, because they also had a
debt with the bank.
(Mi familia está compuesta por 5 miembros, mi papá, mi mamá, mi hermano
mayor, mi hermano mellizo y yo. Entonces las únicas mujeres éramos mi mamá y
yo. Íbamos a vender así temprano, mi papá iba a trabajar, pero a veces no le daba
la gana de darle dinero a mi mamá y era tan sentido ahí que no teníamos para
medicamentos, yo cuando he empezado a usar lentes, se ha roto, por travesuras de
los niños, no. Y mi mamá ha ido a comprar de El Alto, usados. Y ella me ha
dicho, ponte esto, ponte. Sí, con esto veo, así. Y con eso es que lo he hecho
empeorar más mi ojo. Por la ignorancia, por la pobreza, también porque ella no
podía pagar el médico. Ya con el tiempo, ha ido mejorando un poco, y hemos, no
pues, se ha complicado la cosa. Ya he perdido un ojo, mi papá un poco ha
tomado, digamos, conciencia. A dicho, le daremos sus lentes, no tenía este ojo la
prótesis, ósea hasta el 2008, hasta mis 22 años, seguíamos con el dinero muy
limitado, y mi mamá ha tenido que ir a trabajar a los Yungas para ganar 2000
pesos y venir una vez cada dos meses. Mi papá se ha ido, venía, se iba, así. Era
complicado, porque ellos también tenían una deuda en el banco.)
The ways that poverty affected Kari’s disablement are identified in this quote. She first talked about how lack of good quality medical services impacted her life before she was born. And, as a child, lack of economic resources for access to an ophthalmologist pushed her to use glasses that might have decreased her vision. Another consequence of poverty in Kari’s life was the separation of her family. Her mom had to travel to a rural
163 area in order to increase her household income and deal with their bank debt. Poverty and lack of access to health services were determinants for the disablement of Kari. Besides, a gender component is present, Kari started working with her mother because they were the only women at her house. This might have been another aggravating factor for Kari’s disability.
Kari’s health debilitation (Fritsch, 2015) is a result of the material conditions in which she was born. She is aware of how much influence poverty has in the aggravation of impairment. She explained:
So, the unfortunate thing is that the poor person is the one who has disability. As
the poor have no conditions to heal or go to the doctor, I do not know, to ask the
pharmacy, which is the simplest, then let that disease complicate and become
disabled, and generally, many of the women do not know, for example, of a birth
in the rural area, or in the same city, in the peripheral area, so they have babies
naturally, without a midwife, nothing. By delivering the baby, they have moved
their heads, they have hit their bellies, something and they have caused the baby
to come with consequences, or have problems in the eyes, ears, or maybe they
have consumed something, because they had no medical orientation . And that is
because they had no resources, and ignorance.
(Entonces, lo lamentable es que al pobre le llega la discapacidad. Como el pobre
no tiene condiciones para sanarse, curarse, ir al médico, no sé, para preguntar a la
farmacia, que es lo más reducido, entonces deja que esa enfermedad se complique
y se vuelva discapacidad, y generalmente, muchas de las mujeres no conocen, por
ejemplo, de un parto en el área rural, o en la misma ciudad, en las laderas, en la
164 zona periférica, entonces, tienen los bebes de manera natural, sin un partero, nada.
Al traerlos al bebe, les han movido la cabecita, se han golpeado la pancita, algo y
han provocado que el bebe venga con consecuencias, o ser mal de los ojos, de los
oídos, o talvez han consumido algo, porque no tenían orientación médica. Y eso
es porque no tenían recursos, y la ignorancia.)
The connection between poverty and disability is clear for Kari, and specifically how these two components are paramount when addressing maternal health in the periphery.
She pointed out how acquired disability through birth delivery is perceived as ‘mal de ojo’, referring to a curse, or not even perceived at all. The most common disabling factor in the global south is poverty (Braithwaite and Mont 2009); however, spaces of poverty are complex and require open cultural understanding, as well as notions of place and identity (Grech 2015). For instance, Kari explains how culture plays a major role when dealing with acquired disability, based on her own life experiences.
Throughout this chapter, the experiences of participants were analyzed by exploring their participation in disability activism, as well as their individual practices and perceptions. Three major themes emerged through analysis of the interview data.
Conclusions about these findings will be discussed in the next chapter.
165 Chapter Five
V. Conclusions
The present thesis provides insights on the lived experiences of disabled Bolivian activist women in an attempt to fill a literature gap that neglects the realities of thousands of women. These experiences demand consideration from country-specific and cross- national perspectives. Therefore, this thesis offers an in-depth analysis of activist women’s experiences of disability in the Bolivian context, which can contribute to comparisons of disability experiences across the global south and north.
This thesis produced three central themes. The first theme was “embodying multiple identities,” which examined participant´s overlapping identities as disability activists, mothers, wives, daughters, friends, and working women . The second theme was
“exercising disability activism,’ which explored practices involving work and sisterhood, as well as the participant’s achievements such as political consciousness and social incidence. Finally, the third theme described how disabled activist women navigate and make sense of social institutions.
In this chapter, I will reflect on the practical, methodological and theoretical implications around experiencing disability through the stories of activist Bolivian women. Additionally, I will explore limitations of this study and areas for further research within a Transnational Feminist Disability approach. I present three main implications related to the exploration of disability in a Latin American context, specifically The Plurinational State of Bolivia, as part of the broader global south.
166 A. Embodying multiple identities
Participants actively engage and dedicate their time to disability organizations. In fact, activism is a fundamental part of the lives of this group of women. This activity shapes their identity as activists and influences how they navigate their other identities.
Participants, for example, experience a gendered “role conflict” (Kahn, Wolfe, Quinn et al. 1964) between being mothers, daughters, wives, workers, care takers, and disability activists. They reported tensions negotiating such identities, especially when leading “La
Caravana” protest and when highlighting challenges regarding “neoliberal global economic policies” (Soldatic, 2018). They also experienced verbal attacks on their identities. For example, one of the participants explained how women leaders are targeted with labels that intend to diminish their sexuality and mental health such as
“Puta” and “Loca” (Lagarde, 2016; Sánchez & Galindo, 2007). The identity of
“disability activist women” serves as an umbrella to negotiate such role conflict, given that all participants share this identity label. Moreover, focusing on “disability activist women” at the center of the analysis was important because it avoided depictions of disability as “agony photographs” (Rivera Cusicanqui, 2015) or from a “personal tragedy disability model” (Oliver 1990) approach.
Motherhood is deeply rooted in the amalgam identity construction of Bolivian disabled activist women. Based on the findings, this part of the participant’s identity has three dimensions. They include the following: 1) The political, whereby women treat their organizations as their families, and they identify themselves as the mother of the organization; 2) The motivational, whereby women find a reason to live and to overcome their disability in their children; and, the least common, but still important, dimension 3)
167 The prejudicial, whereby women deal with the stigma of the assumption that they are bad mothers, just because they are disabled. In some cases, it is not only the external society that imposes this stigma, but also some of the participants affirmed that not all disabled women should be mothers, often excluding intellectually disabled women, through a process of “Othering.” (Bhabha, 2012; Memmi, 2013; E. W. Said, 2012; Spivak, 1988)
As a conclusion to this section, the experiences of Bolivian disabled activist women could not be complete without including the perception these women have on motherhood, as well as their own experiences as mothers and leaders. The three described dimensions allow for the capturing of the ways in which being a disabled mother influences their political activist attitude. First, it is evident that their caring duties as moms expand outside the domestic sphere by replicating motherly behavior with their disability organizations. Many of the leadership styles of these activists are managed as if their organizations were their families and they were the mothers. Second, being a mother has great significance at a motivational level as it is a core identity that inspires many women to thrive. Lastly, being a mother and being disabled is a combination that is socially not accepted, not even inside the disability community, as some disabled women see themselves as suitable to be mothers but not others, depending on their impairment.
B. Exercising disability activism through work and sisterhood.
Disability activist women in Bolivia explore disability through activism as part of a political consciousness. Disability activism is practiced in the women’s own disability organizations, as all women were active members, and in many cases hold a status as president, vice-president, or treasurer of such organizations. However, their practices regarding disability activism transcend their disability organizations. Many women
168 explained that they work, or have worked in disability awareness raising campaigns, as well as disability social research institutions and other workspaces where they prioritize the empowerment of disabled people. Women identified their professional engagement as part of a “disability success stories” (Campbell, 2009, p. 29) narrative. Such engagement contributes to the overcoming of fear and prejudices. In fact, disability represents an opportunity for professional growth.
A unique attribute about Bolivian disabled women activism is the element of
“sisterhood” (Lagarde, 2009), which is understood as a support network to resist against gendered oppressions. Such networks may be present within personal spaces such as family environments or public spaces such as work and school. For instance, sexual education, in many instances, was only developed through sisterhood networks.
Participants identified themes such as menstruation, pregnancy, abortion, sexually transmitted diseases, HIV, sexual violence and access to sexual health services as primordial for disabled women. Mothers, grandmothers, sisters and women friends are at the core of the support systems for disability activist women in Bolivia. Participants navigate disability through sisterhood networks. For example, some of the women gained social capital, access to welfare assistance, and a sense of belonging through participating in such networks.
Social change and political consciousness are intertwined processes where class, race, ethnicity, and disability attributes are acknowledged as part of a social history of inequalities. Disability women activists in Bolivia politically challenge the status quo by denouncing corruption within their disability organizations. Doing so is considered brave because of the negative consequences it might have. Of the examples provided by the
169 participants, corruption was regarded as a gendered violence because it neglected their participation based on their identity as women. One of the most important social protests during the contemporary Bolivian history is “La Caravana” protest during 2016, where disability grassroot organizations contested the government by demanding a monthly stipend of approximately $35 for disabled people categorized as severely impaired.
“La Caravana” was only possible due to the disabled women’s participation. Emotional intelligence and effective leadership were attributes that the participants raised while describing the importance of women’s role before, during and after the protests. Values such as awesome, incredible, brave, committed and consequent were assigned to women leaders by their own peers.
Women leaders dealt with psychological intimidation and violent repressions from police officers. They also prevented sexual abuses from male protesters to mostly intellectual disabled female protestors. However, such prevention was not acknowledged necessarily as sexual violence but instead as a policing of bodies. For example, some participants blamed intellectually disabled women for being rape survivors and also blamed their mothers for their poor quality to raise their disabled daughters. Such machista comments are common in the Bolivian context (Mendez Cruz, 2012). Ableist assumptions and contradictions regarding sexual violence are part of the struggle that disabled women experience in Bolivia.
The organization of protests with the magnitude of “La Caravana” had, indeed, successful political incidence. First, the government granted a disability monthly stipend of $35. Second, awareness was raised over the existence of disabled people in Bolivia through media. And third, negative perceptions of disabled people were changed as
170 demonstrated by Barroso (2018), who confirmed that private employers in three main cities in Bolivia showed a greater awareness of non-discrimination and greater sensitivity to providing opportunities for the disabled population. Before the 2016 protests, a disabled person was 4% less likely to get a job than in 2017 (Barroso, 2018, p. 69). “La
Caravana” and the disability monthly stipend represent a social conquest towards the political agenda for Bolivian disabled women. Recognizing the history of disability through women’s experiences not only sets up a national disability agenda, but also shrines light on possible guidelines for the constantly strengthening feminist agenda in
Bolivia and the rest of Latin America.
Other important remarks considered in the Bolivian disabled women’s political agenda had to do with participant’s personal and communal dreams and plans. Some of these projects included more political representation. Some participants talked about problematic contradictions on legislature, governmental discourse and welfare practices.
It was recognized that political role models for disabled Bolivian women are important.
The Aymara principle “chikata-chikata’, which means “half-half” was identified as a political, discursive illusion, specifically, when addressing the political representation of women in the parliament, as well as the notion of ¨chacha-warmi¨ (male-female). Other remarks had to do with advocating for a national alliance to demand the government funding for a system of personal assistance for Independent Living (Gerben Dejong,
1979) accommodations for physically disabled people.
Disability retirement plans were regarded as a key point in the political agenda of disabled Bolivian women, as well as creating more disability organizations across the country, especially in the rural areas. Participants insisted on the importance of proper
171 data collection regarding femicides and statistics on school enrollment, as well as job inclusion. Femicide along with physical, psychological or sexual violence against disabled women is not documented. Most of the participants shared cases that they had heard from friends. However, there is no official data about it. A final remark regarding the political agenda for Bolivian disabled women is the creation of alternative economic incomes to traditional jobs. Participants navigate the informal economic sector. Some of them sell things in the streets. For example, one participant runs her own small bakery business, while another one produces handcrafts and sells them among friends.
Participants are pushed to different alternatives to earn money because of the many structural and institutional barriers that society imposes onjob opportunities for disabled women.
C. Navigating social institutions
Bolivian disabled women often successfully navigate social institutions such as education and the economy, but they experience significant challenges in doing so. For example, education access for disabled girls in Bolivia is discouraging (C.O.B.O.P.D.I.,
2009; Crespo Chuquimia, 2017). However, women shared a group of strategies that they utilized to thrive, including negotiating with the school’s faculty, administration, and the ministry of education. Differences between negotiation processes involved economic and social status of the families. One of the participant’s families economically contributed to the private school to build accessible ramps. However, another participant’s mother had to invest time to contact local authorities, as well as write letters to the education ministry, so that her daughter could get accepted into a school that did not have disability accommodations.
172 Some of the participants could only afford access to higher education while working at the same time. Challenges they faced at educational institutions included conflicts about revealing their disability to professors and fellow students. Prejudices in educational settings are persistent such as saying that disabled people who attend a university will only get a degree out of pity. Therefore, participants relied on strategies to keep up with classes, despite not having the necessary accommodations. For instance, disabled women highlighted the internet as an efficient educational tool, but also stated that disability devices, such as hearing aid devices, wheelchairs, and glasses, are a necessity to ensure high quality education.
The economic situation of disabled women in Bolivia is decadent (Barroso, 2018;
C.O.B.O.P.D.I., 2009). Access to formal employment is not common and when there it exists, there are no disability accommodations in place. One of the participants nostalgically remembered that the only place that offered such accommodations was an
NGO that stopped working in the country and that governmental department offices do not consider disabled employees. Some suggestions participants provided included offering flexible hours, removal of physical barriers, and the creation of inclusive material. Disabled women have, in some cases, to work doing two or three jobs. One of the participants contributes to disability justice actions through economic empowerment as part of her entrepreneurship. However, income is not fixed and, therefore, she will sometimes financially struggle. The monthly government-provided stipend is important for this reason.
The thesis breaks ground in a number of ways. First, it provides a new approach to disability in Bolivia, which entail a social identity around disability activism where
173 women are key political actresses. Second, it applies Global South Disability Studies in a previously under-studied context. Third, it highlights the value of a transnational feminist approach. Fourth, it identifies specific disabling barriersfor Bolivian disabled activist women, and finally, it identifies disability and gender experiences that have previously been unrecognized.
174 D. Theoretical implications
This study of the experiences of Bolivian disability activist women mainly contributes to two academic approaches; global south disability studies and transnational feminism. The component of activism works as a “taypi” (Rivera Cusicanqui, 2015) encounter where conundrums of gender, disability, coloniality, and geopolitical dynamics coexist. Similarly,Galindo (2018) describes her feminist organization, “Mujeres
Creando” as follows“Somos indias, putas, y lesbianas juntas, revueltas y hermanadas”
(“We are, whores and lesbians together, mixed and sistered) (Galindo, 2018, p. 611). The incorporation of Bolivian experiences about disability and feminism are entrenched in decolonial dynamics that challenge knowledge production. Therefore, a major theoretical implication of a “transnational feminist disability approach” is its relation to activism.
A transnational feminist disability approach is a theoretical contribution to borderlines (Anzaldúa, G. 2016) and migration literature,including understanding urban- rural multilocality migrations in a Bolivian context (Cielo, C., & Antequera Durán, N.
2012) and forced migration (Pisani & Grech, 2017). This research was the first to use a transnational feminist approach to disability studies in Bolivia. It addresses contemporary feminist Bolivian social theory, and it highlights the shared struggles between Bolivian feminist activists and disability women activists. Body politics (Bordo, 2001; Kubissa,
2015; Lamas, 1994) are essential to the exploration and questioning of social labels regarding gender, sexual orientation, race, ethnicity, disability, debility, migratory status, color of the skin, number of limbs, sensorial perceptions and socio-economic status.
While identifying elements of the lived experiences of Bolivian disabled activists,
I encountered similarities between other oppressed experiences such as the ones reflected
175 in black feminisms (Jabardo, 2012), chicana reflections(Anzaldúa , queer studies (Kafer,
2013; Puar 2018), and feminist migration studies. The taypi (encounter point) to all these experiences is active and collective resistance. Therefore, a transnational feminist disability approach explores examples of political resistance. It focuses on how disabled women resist state, systemic and geopolitical oppressions inflected in their bodies, as well as in their territories, sisterhood networks and families or communities. Disability activism exercised by Bolivian disabled activist women is a political resistance to ableism and machista oppressions.
E. Methodological implications
It is paramount to consider a methodological process that considers Bolivian social theory, as well as the ethical implication of working in a global south environment. The philosophical underpinning of this research is cultural. Therefore, I include a reflection of a Bolivian ch’ixi methodology (Rivera Cusicanqui 2019). By doing so, I open a space to reflect and reconstruct silences. A ch´ixi methodology recognizes the implicit relation between intellectual work and corporeal work. Therefore, a c´hixi methodology encourages exploring research topics through listening before analyzing. This involves respecting and patiently accompanying study participants during the interviews. Chuyma
(heart, lungs and kidney) listening means to find equilibrium between dichotomies, to find pa equilibrium, between liminal spaces, sometimes contrary spaces. Cohabiting in this liminal space is a painful experience, but it is part of crossing time paradigms and cultural barriers.
176 The interview format allowed freedom for silences, as well as a natural flow of conversation. Study participants are complex characters with asynchronic narratives, making it possible to apply a Qipnayra logic to their story telling analysis during the interviews. A Qipnayra logic implies to conceive time narratives as circular, instead as linear. Such adjustment allows participants to talk about past events as elements that still affect their present experiences, and that at the same time influences their future plans.
For example, during interviews with the Bolivian disabled activist women, some would jump from their childhood stories to their future plans and back. Such chaotic (ch’enko) narrative allows a deeper understanding of the participant’s narratives embedded in their cultural context.
With regard to my emancipatory approach, changing the social relations of knowledge production in this research was not possible. Mainly because the active involvement of research participants demands time and to share intellectual discussion. Those two conditions were only partially met. Contacting all participants again is difficult because I did not have participants’ direct contact information.
E. Practical implications
After conducting this research, I align myself to the political agenda of the participants as I am inspired by the high-quality leadership skills of disability activist
Bolivian women. Their work and life experiences bring to the forefront several needed policies and organizational practices. Based on this study’s findings, I suggest that policy consider relevant issues that concern women within the disability population. The need for sexual education is a major element to consider, as well as economic incentives to support entrepreneurships. The National Institute of Statistics should keep record of the
177 disabled population, especially regarding violence against disabled women. Additionally,
I recommend that disability organizations consider gender dynamics in an attempt to avoid sexist, machista environments. Bolivian disabled women´s leadership must be of guidance not only to all disability organizations, but also feminist organizations. Their holistic approach that prioritizes care over hierarchical structures is an example of effective resistance against neoliberal oppressive policies.
F. Limitations
Certain limitations regarding methodological design as well as theoretical reach were encountered. One of the main methodological limitations regards sampling. Due to time and location constraints, I only conducted interviews at the national council of disability office, located in a major city of Bolivia. So, it was difficult for women who lived in other cities, or rural areas to participate, even if they were interested in doing so.
Another sampling limitation is that only women who are already part of a disability organization participated from the research, excluding valuable experiences and perspectives from disabled women who may not participate in disability organizations.
Such limitations turned out to be beneficial for the theoretical analysis of this research. By only interviewing disability activists, I was able to explore activism as a primordial element to understand the conundrum of disability and how it unfolds under a
Bolivian contextual scenario. However, disabled women who are not activists will probably not share the same identity struggles, or their navigation through social institutions might vary from this research participants’ experiences. Besides, intellectually disabled women did not participate, due to lack of training in the methodological accommodations that would have been needed. A final major limitation
178 that I encountered had to do with the constrained view that my methodological tool provided. Specifically, the unstructured interviews provided only one angle from which to understand Bolivian disabled activist women’s experiences. Even though interviews allowed for themes to emerge naturally, as I did not have an ordered set of questions, I could not analyze other important elements such as participant observation notes from important disability activist events.
G. Areas for further research
It is paramount to consider intellectual Bolivian disabled women in future research. A “transnational feminist disability” model acknowledges that disability activists are key actresses in the understanding of disability. Women activists delineated a political agenda that transcends national border lines. Therefore, it would be exciting to apply such theoretical model to other contexts of the global south, particularly other countries in Latin America and other cities and rural communities in Bolivia. This research is exploratory and each one of the main themes that emerged could be used as new avenues to explore.It would also be interesting to explore how crip time apply to a
Bolivian context within a Qipnayra logic.
Additionally, future research should include Participatory Action Research
(Reason and Bradbury, 2005) approaches that centers disabled Bolivian women in self- directed projects that are oriented toward social change efforts. For example, they could engage in a Photovoice (Hergenrather et al., 2009) project that illustrates the daily challenges, successes, growth, sisterhood networks, and other important aspects that women face. After all, these types of projects have the potential to be truly emancipatory.
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Appendix A
Consent form
201
202 Appendix B
Formulario de consentimiento
203
204 Appendix C
Correo electrónico de reclutamiento
205 Appendix D
Email recruitment letter
206 Appendix E
Unstructured interview guide
207 Appendix F Translation statement
208