ARTIGOS

 

Educational goals for college students diagnosed with disabilities: from individualist to transformative activist agenda

 

Metas educacionais para universitários diagnosticados com deficiência: de uma proposta individualista à ativista transformadora

 

Metas educacionales para estudiantes universitarios diagnosticados con discapacidad: de una propuesta individualista a una activista transformadora

 

 

Dušana Podlucká

LaGuardia Community College, City University of New York - CUNY - Estados Unidos, América do Norte; dpodlucka@lagcc.cuny.edu

 

 

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ABSTRACT

Due to the legal protections and the effects of inclusive reforms introduced in the U.S. in the last decades, the number of students diagnosed with disabilities (SDWD) entering post-secondary education in the country has steadily increased. Nevertheless, SDWD remain significantly underrepresented among the college student population and their graduation rates are lower than those of their able-bodies peers'. Common explanations of unequal outcomes of SDWD in college have invoked issues related to students' transitioning from high school to college and inadequate provision of diversified and adequate support. In this paper, I critically examine the scholarship on academic success of SDWD in higher education that shape institutional discourses and practices around educational and life goals for SDWD. My analysis reveals that narrowly individualistic notions of personal responsibility, autonomy, self-determination and self-advocacy skills dominate such practices and discourses. My contention is that a focus on achieving independence as the ultimate educational goal for SDWD reproduces ableistic assumptions and ultimately disempowers those students. Merging insights from critical disability studies with the Vygotskian socio-historical theory expanded by the Transformative Activist Stance, I propose a radical reconceptualization of developmental goals for SDWD away from the notion of independence of individual learners toward focusing on interdependence, reciprocity, relationality, connectedness and collective agency.

Keywords: Disability; Interdependence; Ableism; Vygotsky; Transformative Activist Stance.

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RESUMO

Devido às proteções legais e aos efeitos das reformas inclusivas introduzidas nos EUA nas últimas décadas, o número de alunos diagnosticados com deficiência (SDWD) ingressando no ensino superior no país tem aumentado constantemente. Entretanto, o aluno diagnosticado com deficiência permanece significativamente sub-representado e apresenta taxas de graduação menores entre a população de estudantes universitários. Explicações comuns de desfechos desiguais de alunos com deficiência na faculdade têm invocado questões relacionadas à transição dos alunos do ensino médio para a faculdade e a oferta inadequada de apoio adequado e diversificado. Neste artigo, examina-se criticamente a bolsa de estudos e o sucesso acadêmico dos alunos com deficiência no ensino superior, que molda discursos institucionais e práticas em torno das metas educacionais e de vida para os alunos com deficiência. A análise revela que noções estritamente individualistas de responsabilidade pessoal, autonomia, autodeterminação e habilidades de autodefesa dominam tais práticas e discursos. Discute-se que o foco em alcançar a independência como o objetivo educacional final para o aluno com deficiência reproduz discriminações; em última instância, descapacita esses alunos. Unindo a abordagem de estudos críticos de incapacidade com a teoria sócio histórica vygotskiana expandida pelo Posicionamento Ativista Transformador, propõe-se uma reconceitualização radical dos objetivos de desenvolvimento para o aluno com deficiência, longe da noção de independência dos alunos individuais para focar na interdependência, reciprocidade, conectividade e na importância das relações e ações coletivas.

Palavras-chave: Deficiência; Interdependência; Capacitismo; Vygotsky; Postura ativista transformadora.

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RESUMEN

Debido a las protecciones legales y a los efectos de la reformas inclusivas introducidas en los EE.UU en las últimas décadas, el número de estudiantes diagnosticados con discapacidades que ingresan en la educación superior en el país ha aumentado constantemente. Sin embargo, el número de estudiantes diagnosticados con discapacidad sigue siendo muy pequeño entre la población de estudiantes universitarios y, sus notas de graduación son mas bajas que que las de sus compañeros sin discapacidad. Las explicaciones comunes de esta disparidad entre los estudiantes con discapacidades e sus compañeros sin discapacidad en la universidad han planteado problemas relacionados con la transición de la secundaria a la universidad y la provisión inadecuada de suporte diverso y adecuado. Este artículo examina críticamente los estudios sobre el éxito académico de las personas con discapacidades en la educación superior que respaldan los discursos y prácticas institucionales en torno a las metas educacionales y de vida de los estudiantes diagnosticados con discapacidad. El análisis revela que estas comunicaciones y prácticas son el resultado de una "estrecha" noción individualista de responsabilidad personal, autonomía, autodeterminación y habilidades de autodefensa que dominan tales discursos y prácticas. Se argumenta que el enfoque en el logro de la independencia como objetivo educativo último para los estudiantes con discapacidad reproduce la discriminación; en última instancia, fragiliza a estos estudiantes. Uniendo el enfoque de los estudios críticos de la discapacidad con la teoría socio histórica vygotskiana ampliada por la Postura Activista Transformadora, proponemos una reelaboración radical de los objetivos de desarrollo para los estudiantes diagnosticados con discapacidad, lejos de la noción de independencia de el alumno individualmente, para enfocarse en la interdependencia, reciprocidad, conectividad y la importancia de las relaciones y acciones colectivas.

Palabras clave: Discapacidad; Interdependencia; Capacitismo; Vygotsky; Postura Activista Transformadora.

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INTRODUCTION

Due to the legal protections and the effects of inclusive reforms¹ introduced in the U.S. in the 1970s and 1990s, the number of students diagnosed with disabilities² entering college in the country has increased steadily (Barnett & Jeandron, 2009; Cook & Rumrill & Tankersley, 2009; Garrison-Wade & Lehmann, 2009; Hadley, 2006; Lipscomb, Hamison, Liu Albert, Burghardt, Johnson & Thurlow, 2017). Specifically, the National Educational Longitudinal Transition Study 2 (NLTS2) indicates that between the years 1987 and 2003 there has been a seventeen percent (17%) increase in the number of students diagnosed with disabilities (SDWD) who enrolled in two-years colleges (also referred to as community colleges). Thus, two-year institutions have experienced the greatest growth in enrollment of students with disability (Wagner, Newman, Cameto, & Levine, 2005, as cited in Garrison-Wade & Lehmann, 2009). Currently, nineteen percent (19%) of all U.S. college students are diagnosed with disabilities and most of them continue to access postsecondary education via community colleges (Madaus, Gelbar, Dukes III, Faggella-Luby, Glavey, & Romualdo, 2019).

Despite this continuous growth, Garrison-Wade & Lehmann (2009) maintain that SDWD remain significantly underrepresented among the community college student population. This is largely due to the fact that disabled individuals attend postsecondary education at lower rates than the non-disabled population (Wehman, 2005) and they tend to drop out of higher education at a higher rate than students not diagnosed with disabilities (Murray, Goldstein, Nourse, & Edgar, 2000). However, data from the National Center for Education Statistics for the years 2004 and 2008 indicate a positive trend in completion rates for community college SDWD, which increased from eleven percent (11%) in 2003 to sixteen percent (16%) in 2007 (Barnet & Jeandron, 2009). This is consequential, insofar as SDWD who graduate from college have a greater chance of becoming financially independent (Quick, Lehmann, & Deniston, 2003) and are three to five times more likely to be employed than a disabled person who never attended college (United States department of Labor, Employment, and Training Administration, 2004, as cited in Cook et al, 2009). Partial or even a small degree of completion of postsecondary education (e.g., a few college courses or a certificate program) significantly improves the chance of an individual with disability to be employed (Zaff, Hart, & Zimrich, 2004). However, the rate of employment of disabled individuals aged 18-64 is only thirty-two percent (32%) compared with the rate of eighty-one percent (81%) for their non-disabled peers (National Organization on Disability, 2000, as cited in Hart, Pasternack, Mele-McCarthy, Zimbrich, & Parker, 2004).

Educational and life goals and expectations for college students diagnosed with disabilities

Garrison-Wade & Lehmann (2009) point out that the level of college success (or failure) of SDWD corresponds with low expectations typically held by institutions and families for those students. According to them, this accounts in great measure for those students being insufficiently prepared for college. As the authors point out, this is the result of two issues, namely: (a) those students are not advised to take classes that meet college entrance requirements, and (b) their learning is compromised if they do not receive the types of support they need (Garrison-Wade & Lehmann, 2009, p 420). The findings from the Wave 2 NLTS2 study (Wagner, Newman, Cameto, & Levine, 2005, as cited in Garrison-Wade & Lehmann, 2009) show that thirty-five percent (35 %) of secondary students with learning disabilities received the standard general education curriculum. However only fifty-two percent (52%) of those students also received the necessary modifications that would help them succeed in general education classes³.

Taken together, those findings clearly indicate the gap in the higher education of SDWD that is created by not providing those students with diversified and adequate cultural tools necessary for them to benefit from the general education curriculum. Furthermore, SDWD entering the college also face additional challenges resulting from conspicuous gaps in the transition from high school to college, as the latter impose a new and different set of expectations for them. Those expectations mostly originate in the legislative gap between the rights, available services, and support provided to SDWD at high school and college.

While in high school, SDWD have the legal right for Individualized Educational Plans (IEP)⁴, which can be incorporated into the general education curriculum. However, students in postsecondary education cannot legally demand any such individualized plans. In addition, once those students become legally adults, their parents (or legal guardians), who are often intensively involved in their education and provide ongoing support, cannot intervene and act on their behalf. Upon entering college, those students are expected to act independently, manifest their autonomy, and self-advocate (i.e., make demands they need from the institution for accommodations and resources). This usually entails that the students self-identify as a "Student with Disability". This includes providing supporting documentation of their disability, request their support and services, identify the academic accommodations needed, self-advocate to their instructors to implement their support and participate in the services that meet their needs (Getzel & Thoma, 2008; Hadley, 2006; for a detailed analysis of this process see Podlucká, 2020). Unfortunately, most SDWD enroll into the college unprepared to disclose their disability, lack the understanding of how to access disability support services on campus, or even postpone and wait to disclose their disability until they experience academic problems (Getzel & McManus, 2005). Thus, for SDWD, the transition from high school to college usually involves developing a whole new range of skills and abilities as they participate in social practices that are quite unlike those they were used to participating in while in high school. Moreover, many of the skills and practices that SDWD are expected to manifest and engage in are not only new to them, but those are de facto additional ones to the repertoire of practices of the typically developing college student. In other words, in addition to navigating the world of able-bodied college students, SDWD have to appropriate a whole separate subculture of a "Student With Disabilities".

The literature on transition to college and expectations by postsecondary education institutions focus predominantly on individual responsibility, autonomy, self-determination and self-advocacy skills of SDWD (e.g. Clark, Olympia, Jensen, Heathfield & Jenson, 2004; Getzel & Thoma, 2008; Halloran, 1993; Ryan & Deci, 2000; Skinner, 1998; Thoma & Wehmeyer, 2005; Ju, Zeng, & Landmark, 2017; Daly-Cano, Vaccaro, & Newman, 2015; Wehmeyer, 2015). For instance, a number of scholars maintain that self-determination is the most essential characteristic to the retention of SDWD in postsecondary education (Getzel and Thoma, 2008) and it is a crucial predictor of academic success of students with disabilities (Wehmeyer, 2015; Daly-Cano et al, 2015). Among others, Halloran (1993) considered self-determination as the "ultimate goal" for SDWD. In their turn, Clark and colleagues (Clark et al, 2004) see in self-determination skills the means for preparing students diagnosed with intellectual disabilities for the "universally agreed upon goal of education, being as autonomous as possible in making meaningful life choices" (2004, p. 151).

Similarly, self- advocacy skills are regarded as critical to successful transition to and retention in postsecondary education (Adams & Proctor, 2010; Daly-Cano, Vaccaro & Newman, 2015; Hadley, 2006; Janiga & Costenbader, 2002). However, self-advocacy has recently been considered less central in academic success of the students' diagnosed with disabilities. Instead, it has been contextualized as an integral element of students' sense of belonging, along with students' social relationships, and students' "sense of mastery of the student role" (Vaccaro, A., Daly-Cano, M., & Newman, 2015, p 670).

Fortunately, an overall trend toward criticizing individualist approaches to supporting students with disability has begun to emerge in the literature. Garrison-Wade and Lehmann (2009) are critical of the existing prevalent emphasis on individual responsibility and self-advocacy skills of SDWD as well as of the expectations set by postsecondary education institutions for those students. Using strong language, they unequivocally call those expectations deficient for their ignorance of the "obligations of community colleges and policymakers to support those plans" (2009, p. 438). These authors further claim that, besides teaching self-determination and self-advocacy skills in high school, other steps towards successful transition from high school to college are necessary, including "early and systematic planning", which starts in high school and involves communication among institutions; setting up the future educational goals for the high school students; and goals for their community college experience and for future career. In their turn, Cobb and Alwell (2007) optimistically conclude that interagency and multiagency planning, including planning with postsecondary institutions, is increasing. Indeed, the research suggests that the most effective approach to the transition from high school to post-secondary education include interagency networking and collaboration during the planning process (Povenmire-Kirk et al., 2018; Flowers et al., 2018).

My own stance toward the conundrum of the transition to college for SDWD is that collaboration is clearly desirable and necessary on all levels, from individual to institutional, involving interpersonal, interand multi-institutional collaborations throughout the preparation and planning. However, my contention is that, in addition to a flexible and comprehensive system of collaborations, the very understanding and definition of educational and life goals for SDWD entering college should also be reconsidered and transformed (for a detailed discussion of this issue in relation to pedagogical practices for students diagnosed with intellectual disabilities, see Podlucká, 2013, 2020).

Traditionally, life and educational goals for people diagnosed with disabilities have focused on increasing their independence and autonomy, whether their academic or social skills are considered. This goal is predicated on two problematic assumptions. First, the assumption that more autonomous a person is, the more likely he or she is to experience a higher quality of life (Brown, Branston & Hamre-Nietupski, 1979, as cited in Craig, 2001), including emotional and mental well-being (Clark et al, 2004). Second, expectations set for students with disability are grounded in a conflicting logic that only an autonomous and independent being can be a good citizen, one who is moreover able to contribute to national economic prosperity (Philips, 2001, as cited in Robertson, 2001). However, a closer look quickly reveals the contradictory character of those assumptions. For instance, even though self-determination, including autonomy, is considered to be an individual attribute originating in and developed by an individual person, all support from the social environment (e.g. parents and caretakers, school psychologist, teachers, etc.) is clearly needed for their development. Nonetheless, self-determination is largely conceived as "an innateneed that motivates an individual to change in certain behaviors, in particular, behaviors considered "self-actualizing" (Ryan & Deci, 2000, as cited in Clark et al, 2004, p. 151, emphasis added).

The limitations of upholding independence and autonomy as life and educational goals, whether for disabled or non-disabled individuals, are also obvious in the narrow and dichotomized understanding of independence as an individual characteristic. That is, independence is viewed as an individual trait or ability of the person acting alone, unrelated to others and to her surroundings. Such an assumption is readily rejected by critical approaches to development, education and disability. Clearly, being engaged in any activity, even in the most solitary act, human beings are always related and therefore dependent on others through using cultural tools that are inherently social. Independence in this limited view is usually understood in being independent of others. In a culture that praises individualism, being socially dependent and relying on interactions with others in daily activities is commonly perceived as a weakness, especially if it involves interaction deviating from the normative means of interactions, as it is often the case for disabled people. This limited view of in/dependence resonates with the notion that a dependent person is somehow less human and has less of the self. However, what creates dependency is the hegemony of the dominant culture by subjecting disabled identities to continuous and systematic subordination to normative discourses and practices.

To counter such narrow, individualistic view of the dynamics of in/dependence, I rely on an alternative view, based in cultural-historical and other relational perspectives, according to which we are always dependent on social processes and relations as our minds function and are expressed in and through social activities carried out with the use of cultural tools. As is well known, this point is centrally elaborated in Vygotsky's developmental approach to studying human mental functioning aimed at revealing the social origins of uniquely human mental process. According to the this approach, further developed across several generations of researchers, human psychological functioning is constituted by transformed, initially external actions mediated by cultural tools that are eventually internalized and constitute the so-called internal or mental plane of actions (see Arievitch, 2017, for a detailed discussion of how the apparent dualism in Vygotsky's account of the transformation of lower into higher psychological functions was addressed in subsequent works by Galperin and his followers). A simple example is counting silently "in one's head" where the internal execution of this action in the psychological plane does not negate its mediation by the system of numbers that is passed on to children through cultural transmission (without any connotations of passive transmission as in fact children actively appropriate the use of cultural tools by engaging in collaborative practices). Therefore, internal mental operation only appears to be carried out independently of anything and anybody as an internal activity "inside person's head". This simple example illustrates Vygotsky's theory about the external (social) origins of the human mind conceived of as comprising internalized (and transformed) forms of social interaction, as explained in his well-known thesis of the cultural nature of uniquely human higher (i.e., culturally mediated) psychological functions (Vygotsky, 1993, p. 145):

We can formulate the genetic law of cultural development in the following way... Every function in the child's cultural development appears twice, or on two planes. First it appears on the social plane and then on the psychological plane. First it appears between people as an inter-psychological category and then within the individual child as an intra-psychological category... but it goes without saying that internalization transforms the process itself and changes its structure and functions. Social relations or relations among people genetically underlie all higher functions and their relationships.

Continuing with the numerical example above, we can see that a mathematical operation, say to perform a calculation, can be carried out externally by employing "external" cultural tools (e.g. abacus, calculator, or with pen and paper) or even with the help of somebody else. This is typically the case in initial phases of mastering those operations or when they are too complex (e.g., large numbers) to be executed internally ("in the head"). The significance of this discussion of the social origins and culturally-mediated nature of human psychological functioning is to foreground the developmental dynamics of in/dependence. These terms not only always exist in dialectical relationship, but they are context- bound, situated and embedded in activities, including being reliant on the cultural tools employed (See Stetsenko, 2004, for a discussion of how cultural tools typically involve a combination of material and symbolic forms in patterns of social practice).

From such a Vygotskian perspective it's easy to problematize narrow views about independence and autonomy. Independence, in a traditional sense, refers to acting on one's own without being assisted by others or aided by material supports. Thus, the more immediate reliance on social or material support, including through special accommodations, the more dependent we appear to be. Paradoxically, independence and autonomy are frequently achieved by increased dependence and reliance on technology, which is often considered as a desired outcome for disabled people. As Vygotskian theory, and related approaches such as distributed cognitions (Clark, 1998; Hutchins, 1995) insist, we are inherently dependent on the technologies of our bodies, social interactions, and cultural tools. Ineluctably, the rapid increase in globalization, the complexity of our societies and the specialization of human activities have made us increasingly more dependent. Incidentally, our social dependence has been painfully exposed by the current COVID-19 pandemics. This global crisis has laid bare our dependence on other people, on (unequally available) digital tools and on stratified societal systems. The current situation clearly challenges the illusion of individuals' independence.

Scathing critiques of how disciplinary knowledge in the social sciences has promoted individualist views can be found in Rose's (1998) and Danziger's (1990, 1997) works, both of which provide a radical analysis of contemporary individualized and autonomous notion of the person (or self). Such notion is abundantly present in scientific discourses in psychology and related disciplines, as well as widely, if tacitly, embedded in cultural institutions that champion liberal values of freedom, equality and self-governance. In his eloquent critique of individualism, disability scholar Goodley calls for recognition that the "individual valued by contemporary society is a complex phenomenon made by long histories of oppression and domination of medicalization, colonization, patriarchy an heteronormativity" (2016, p 98). He points out that the nonnormative bodies and minds of the disabled are most commonly and intensively subjected to "ableist ideals" of individualism as a result of the contributions of philosophy, psychology and medical practices to the "manufacture of the disabled individual" (2016, p 84). Similarly, Martin and McLellan (Martin & McLellan, 2008; McLellan & Martin, 2005) illustrate how such highly individualistic concepts of selfhood and personhood are applied in Western education and autonomous self-governing individual is celebrated at the expense of the socially dependent, committed citizen. As their works reveal, this focus on individual is due to establishing educational goals and practices, including interventions, on the principles of theories of the self that predominantly rely on individualism and psychologism, despite the fact that "major, historical theories of selfhood come replete with social, moral and political considerations" (Martin & McLellan, 2008). As they suggest, given that the (2008, p. 440-441, emphasis in original):

[e]ducational systems have a social, institutional mandate to prepare students as persons and citizens capable of functional levels of both self-sufficiency and civic participation [a]n overemphasis on the former does much more than risk endangering the latter...[A]n overly individualistic emphasis in education also jeopardizes students' self-sufficiency by possibly providing too little in the way of exposure to the interests and perspectives of others with whom a reasonable level of civil co-existence is necessary for both personal and societal flourishing....[F]ailure to situate self-regulation within its appropriate and necessary sociocultural, historical, interpersonal, and moral context may inadvertently decouple self-sufficiency from civic responsibility in the minds of otherwise well-intentioned teachers and students.

Within the educational and developmental literatures, the focus on independence and autonomy specifically has been widely criticized, whether as life goals for disabled or for people in general (e.g. Bogdan & Taylor, 1992; Carnaby, 1998; Condeluci, 1995; Contompasis & Burchard, 2004; Fisher, 2007; Knox & Bigby, 2007; Lee, 2009; Olivier, 1990; Sevenhuijsen, 2000, 2003; Ward 2011; Wendel, 2006; White, Simpson, Gonda, Ravesloot, & Coble, 2010), or whether as educational goals specifically (e.g. Gooden-Ledbetter, Cole, Maher & Condeluci, 2007; Linn 2011; Robertson, 2001; Symeonidou & Mavrou, 2020). Although those authors work from different theoretical perspectives and focus on different aspects of disability and/or development, they partake in a strong critique of the notion of independence as the result of an artificial and false dichotomy between in/dependence. Instead, they propose focusing on interdependence, reciprocity, relationality, connectedness and collective agency. For instance, the Disability scholar Olivier (1990, p. 184) criticizes the conception of independence for suggesting that:

the individual needs no assistance whatever from anyone else and this fits nicely with the current political rhetoric which stresses competitive individualism. In reality, of course, no one in a modem industrial society is completely independent: we live in a state of mutual interdependence. The dependence of disabled people therefore, is not a feature, which marks them out as different in kind from the rest of the population but different in degree.

Similarly, Kennedy (2001, p. 123) claims that the dependence of disabled people

is not qualitatively different from what other people experience. All people are dependent on others; it is part of social nature of human life. Indeed, people's dependence on each other is the basis for social interaction and the social relationships that emerge from those interactions.

Disability studies and feminist scholars, particularly the ones coming from the perspective of ethics of care, point out that disabled people have always been positioned as dependent. Calling out the false dichotomy of carer and cared for, these scholars indict traditional notions of disability that portray the disabled as only the recipients of care and services (e.g. Carnaby 1998; Kennedy 2001; Manderson & Warren, 2013; Williams 2001; Williams & Robinson, 2001; Ward 2011, Wood 1994). As Ward (2011) further explains, the false dichotomy of carer and cared serves the purpose of enabling the production and maintenance of the status quo portrayal of the disabled as pitifully vulnerable and dependent, which operates with the twin "false belief in the independence of those who have not been labeled learning disabled" (p.173). In their study of families with intellectually disabled people, researchers Knox and Bigby (2007) found that those families relied on interdependence (my emphasis), including on disabled members, to maintain the interdependence of the whole family. Similarly, Williams & Robinson (2001) found out that disabled people, including some intellectually disabled who had high support needs, were performing care tasks for their elderly parents, though regrettably the interdependent relationship was usually not fully recognized either by the parents or their adult children. The researchers note that mutual caring is indeed far more common than is acknowledged and recognized and it often includes people with severe learning disabilities.

The presented examples from research projects focused on integration of intellectually disabled people (Carnaby, 1998; Gooden-Ledbetter, Cole, Maher & Condeluci, 2007) illustrate that positive self-esteem, self-efficacy and overall social integration can be more easily achieved in programs that focus on interdependence rather than independence. Specifically, Carnaby (1998) describes a support model in Milan, Italy, for intellectually disabled people in which interdependence is at the center. In this approach, self-esteem is viewed as "resulting from the social integration of service users as a peer group rather than as individuals, while encouraging independence for users in the form of paid employment" (Carnaby, 1998, p. 219). The program encourages intellectually disabled adults to integrate with the local community collectively and collaboratively, rather than individually. Furthermore, personally significant relationships developed within the group and the community provide the context for positive psychological development. An important part of the program is a "sheltered employment scheme, which, in accordance with Italian legislation, pays a wage comparable to non-disabled colleagues, in turn enabling tenants to pay a standard rent and not be reliant upon state benefits" (p. 225).

Similarly, Gooden-Ledbetter and her colleagues (Gooden-Ledbetter et al., 2007) found, when comparing two different teaching goals of one Independent Living Program (ILP) in Pennsylvania for disabled people, that self-efficacy (skills) and interdependence specifically were both significant, however interdependence was a more significant predictor of life satisfaction. The self-efficacy skills in this ILP are taught with the understanding that teaching interdependence allows the disabled person to "begin to make decisions about how to accomplish those tasks that he/she can or cannot do for him/herself " (p. 157). Further examples from other cultures, especially among indigenous and non-Western ones, in which interdependence is valued over independence, self-sufficiency, self-determination and autonomy also point to the illusionary dichotomy between in/dependence, prevalent individualism and overemphasis of independence that dominates US education and welfare system. For instance, in Portugal the special education system promotes social integration of children with the main goal of inclusion, reflecting a cultural emphasis of social interdependence over self-sufficiency (Linn, 2011). In contrast, the American system focuses heavily on independence, as embedded in IDEA legislation, which arguably creates barriers to children's social integration (Linn, 2011).

The different strands of scholarly literature discussed above can be united based on their support to the twin claims that (a) life and educational goals based on an individualistic notion of selfhood, overtly promoting independence and other self-regulatory competencies are flawed, and are not necessarily conducive to the development of a happier, more independent, and self-sufficient person; and (b) individual's development, including agency and autonomy, does not occur within the limits of individual's mind and body. Instead it originates from and within one's interconnectedness with others, that is, from one's engagement with the world through collective activity.

In the words of Martin & McLellan (2008, p. 442):

sources of consciousness, meaning, mind, and selfhood lie in interactivity with others within historically established sociocultural practices and ways of life... It is in our worldly interactivity with others, not in our underlying mental and neural functioning, that the meaning and significance required to fuel our goal-directed functioning might be located.

After all, it is not the degree and extent of independence of our bodies and minds from technologies and other tools that makes us human agents. The purpose of human life and the point of human existence is not to become independent as one seeks to individually adapt to reality and independently participate in the world. The central claim about the social origins and culturally-mediated nature of human psychological function, including all aspects of human subjectivity, a point that has been well elaborated in sociocultural theory (e.g. Vygotsky, 1962, 1978; Leontiev, 1978; Gal'perin, 1989; Mesheryakov, 1979), has been recently further developed by Stetsenko (e.g. 2014, 2016, 2017, 2019) in her theory of the Transformative Activist Stance (TAS) and is discussed below. As this approach suggests, central to human development is to collaboratively struggle to change the world for the better, to contribute to its transformation, which is always a simultaneously individual and collective process. Therefore, the goal of education should not be fixed on increasing the independence of individuals (as solitary learners) but to create opportunities for and enable all persons, including SDWD, to meaningfully contribute to the transformation of human lives as part and parcel of changing society.

Transformative Activist Stance as a guiding principle for organizing educational and life goals for students diagnosed with disabilities

One of the central claims in the TAS approach is the idea that collaborative purposeful transformation of the world is "the core of human nature and the principled grounding for learning and development." (Stetsenko, 2009, p. 139). Accordingly, "transformative practices are understood to be carried out by collaborating individuals qua agentive actors of society and history, that is as co-creators of the world" (Stetsenko, 2016, p. 173). In consonance with critical social theories, in particular with feminist standpoint epistemology (Harding, 1992) the TAS recognizes that all acts of being-knowing-doing are socially and historically located (always taken from a particular standpoint) and are therefore value-laden and never neutral or disinterested. Adding to this, the transformative ontology of the TAS highlights that all human acts comprise not merely responses to situations and problems posed by historically-evolving contradictions in social practices. On the contrary, the TAS posits a more agentive, and indeed activist, role for individuals qua social actors by foregrounding the inescapably forward-looking nature of each of their pursuits and strivings as instantiated in a vision of how one's community practices ought to be (and by extension their world). Presupposing a horizon of destination as integral to human action renders each act of each person ineluctably transformative as they necessarily contribute to the shifting dynamics of current situations. In Stetsenko's words, "each action of each person, and even her or his "mere" presence in the world (which is never mere) do create new situations through changing existing circumstances and potentials for acting." (2016, p. 211). It follows from this that collaborative transformative practice aimed at changing the world and enacted by activist individual contributions is the grounding for both identity and learning. In other words, human development is realized as an active project of becoming "in the process and as the process of making a difference and mattering in these practices" (p. 211). As Stetsenko further highlights,

[f]rom an activist transformative stance persons are agents not only for whom "things matter" but who themselves matter in history, culture, and society and, moreover, who come into Being as unique individuals through and to the extent that they matter in these processes and make a contribution to them. (p. 145)

By positing a transformative social ontology instantiated by individual acts of contributing to changing social and community practices the TAS offers a more radically egalitarian grounding for designing educational goals for SDWD and inclusive pedagogy. Specifically, it argues that all students, from their unique positions, including the corresponding educational support each requires, have "unlimited potential" and are "equal precisely in the incalculable and immeasurable infinity of their potential" (Stetsenko, 2017, pp. 116-117). From this perspective, educational practices must be carried out in "solidarity with, and learning from and with, those who are marginalized", as Stetsenko argues, because "[i]t is from the position of the marginalized and the excluded that the most critical contradictions and conflicts in society (...) can be discerned, identified, resisted and struggled against" (Stetsenko, 2016, p. 363). This position calls for the centrality of not merely including but elevating the status of marginalized and discriminated students, as is the case of SDWD, as key contributors (agents) for democratizing and realizing egalitarian educational projects, as they stand at what Stetsenko calls the "epicenter of what is to come" and at fault lines of where the society is coming apart. In light of the COVID19 crisis that exposed with unusual clarity the vulnerabilities of oppressed, poor and minoritized communities across the world (and starkly visible in New York City where I live, which was the epicenter of coronavirus for several weeks), Stetsenko was prescient in writing that "[i]t is at this epicenter that the world gets unstuck, runs into impasse and incoherence, and thus, being unsettled in the extreme, propels into the future as the process of its realization."(p. 363). It follows from this that SDWD have an indispensable role in transforming ableistic, discriminatory, and excluding educational practices of which they have first-hand knowledge being de facto experts of the scope and depth of ableism and exclusion in education. This type of pedagogy for and with the oppressed, to paraphrase Freire's seminal work, built on negotiating collectividual dynamics of social practices in light of a collectively envisioned sough-after future wherein the oppressed have a privileged role as agents of transformation, is the hallmark of research projects inspired by the TAS (for an example of research projects co-authored with oppressed groups as leading experts of their community practices, see works by Vianna, 2009, Vianna & Stetsenko, 2014, 2019). As such works make abundantly clear, it is up to our pedagogical and institutional practices, designed and created collaboratively with students, to provide spaces and opportunities for each student to uniquely contribute to learning communities and to matter in them.

 

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Received: July 20, 2020
Approved: August 4, 2020

 

 

1 Federal legislation in the United States federal, such as the Individuals with Disabilities Education Act (IDEA), 2004, Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990 and 2004, has been crucial in creating more opportunities to further the rights of students diagnosed with disabilities to attend higher education institutions (Cook et al, 2009; Garrison-Wade & Lehmann, 2009).
2 Instead of using person-first language (e.g. student with disability) or identity-first language (disabled student) I use a term "students diagnosed with disabilities" to emphasize the socially constructed nature of disability and marked identity that the person may or may not choose to identify with)
3 General education - is based on a curriculum developed for "typically" developing children, based on institutional standards, usually state standards.
4 Individualized Educational Plan (IEP) - is a plan or program designed with a goal of addressing educational needs of a child who attends either elementary or secondary institution and is diagnosed with a disability. The plan identifies type of specialized instruction and related supportive services and educational and developmental goals for a child. Every child who receives special education services must have an IEP. The IEP is developed by a team that includes key school staff, the child›s parents that might be accompanied or represented by a child's advocate.