To be able,or disable,that is the question: A critical discussion on how language affects the stigma and self-determination in people with parability

Abstract

Background:

Despite several fruitful attempts in destigmatization, disability is still associated with stigma. The role of language, especially when addressing a disabling condition and people, has been the matter of social as well as scientific debates. This article poses an intriguing question about the language we apply when addressing people and disability.

Method:

A narrative review of different models of disability with the emphasis on how labels and more generally language affect identity formation, and the extendibility of positive psychology concepts on the field of disability studies.

Results:

In this theoretical paper, the authors suggest that the term disability per se is contributing to increasing the stigma and has disempowering effect. Considering previous evidence from different lines of literature, the authors suggest a new approach of destigmatization, namely changing the term disability to a less stigmatizing one. Moreover, the authors discuss some theories to support this perspective.

Conclusion:

Replacing ‘dis’ in ‘disability’ with the prefix ‘para’ in the term ‘Para-ability’ is suggested.

Keywords

Para-ability disability stigma destigmatization renaming language parability

Introduction

Stigmatization is a labeling process through which people who are perceived to be different are being addressed in a way that makes them feel rejected and lonely (Goffman, 2009; Kurzban & Leary, 2001). Through stigmatization, a person is minimized from a whole to only one or a few special characters that differ(s) from the others and those become the core epithet that the person is being attributed by in the society (Corrigan et al., 2009; Goffman, 2009). More often than not, internalization of the stigma happens (regarded as self-stigma), which can shape the behaviors, attitudes, emotions and beliefs of those who are stigmatized, leading to act in the ways that those stereotypes are suggesting (Major & O’Brien, 2005). Consequently, decreased self-esteem and self-efficacy dissuades individuals from pursuing the unique and distinctive opportunities that are necessary for reaching their goals (Corrigan et al., 2009).

One of the stigmatizing conditions that almost 15% of the world population are facing is disability (The World Bank & World Health Organization, 2011). Disability is an umbrella term covering variety of domains which confine activities and hamper engagement. It also refers to physical or functional impairments of a person’s body (The World Bank & World Health Organization, 2011). Divesting disability from this meaning and introducing it as a unique and distinctive positive cultural identity that elucidates a collective experience of a group of people who are connected with each other through this experience, has been the focus of disability right movements (Linton, 1998, 2006). This, however, is not an all-embracing identity, and the extensive acceptance of it is under question. While some people with disability cannot identify with it (Dunn, 2010; Gilson & DePoy, 2015; Rhodes et al., 2008; Thomson, 2017), many people with bodily variations deny that they are disabled (S.B.M, 26 June 2019, personal communication).

Destigmatization is a complex procedure that has been the focus of a large number of studies and social movements. Fruitful efforts, such as inclusion in school activities, athletic events and social communities (McLoughlin et al., 2017; Taub et al., 1999) as well as raising social awareness toward accepting normal human variation (Dunn, 2010; Linton, 1998; Mallett & Runswick-Cole, 2014; Thomson, 2017), have been made to overcome stigmatization. The evolution of models of disability, from the primitive ‘Moral Model’ to the more recent and developed one by the World Health Organization International Classification of Functioning, Disability and Health Model (the ICF Model) (Dunn, 2010; The World Bank & World Health Organization, 2011), has played a significant role in integration through step-by-step removing of personal as well as social barriers.

The role that language plays in destigmatization as well as identity formation is a subject of interest in the literature on disability. The main concern of debates is how to address people and disability. Both parties that advocate or criticize application of either ‘person first language’ or ‘identity first language’ seem to have strong arguments to promote their perspective. One aspect of applying the correct language, however, has remained inadequately discussed – that is, the implicit meaning that the term ‘disability’ conveys to people in everyday situations and how it might affect the self-perception.

In this article, we reviewed the history of models of interpreting disability, briefly discussed stigma, and scrutinized how language has been debated in disability literature and discussed its role in identity formation. Moreover, with a glance at positive psychology and its extendibility to this field, we brought our argument with regard to previously discussed issues.

The evolutionary path of disability models

Evolution of different ‘Models of Disability’ mirrors how societies have challenged and consequently altered their attitudes toward more acceptance and inclusion. The oldest model, the Moral Model, had conceptualized disability as a consequence of immoral conduct; thus, it was a source of disgrace for the person and his or her family (Dunn, 2010). Segregation, therefore, was an inevitable outcome. The Medical Model, on the other hand, postulated disability as a medical issue which is not the result of people’s behaviors or moralities, but a physical condition that either can be cured or remediated (Cameron, 2013; Dunn, 2010; The World Bank & World Health Organization, 2011). Although this model has been extensively criticized for linking disability with bodily ailment, at the time, the fact that disability was not linked with moral misconducts not only provided treatments for many people in need, but also played an important role in destigmatization; therefore, it played a liberating role for people with disability through putting the condition in a more logical light.

In ‘the Social Model’, disability is considered a social construction and persons with disability are members of a minority group subjected to oppression and denial of civil rights (Cameron, 2013; Dunn, 2010; Mallett & Runswick-Cole, 2014). The problem posed by disability, in this standpoint, is that it is molded by the environment, which generates social, physical and legal barriers (Linton, 1998; Mallett & Runswick-Cole, 2014).

A more updated model is the International Classification of Functioning, Disability, and Health Model, which incorporates conventional models into one comprehensive biopsychosocial approach. It accentuates dynamic influences of personal and environmental factors in formulating the experience of someone with disability – both person’s health condition and contextual elements act as modifying factors that influence activity and participation in life situations (Dunn, 2010; Rath & Elliott, 2012).

Each of these models serves as an organizer that enlightens a phenomenon that necessitates one or other form of explanation from the dominant perspective of the society; however, a model that first proved functional was then criticized as a stigmatizing model. There is an everlasting challenge in exploring different aspects of disability which inevitably leads to arising new debates (Goodley et al., 2017; Mallett & Runswick-Cole, 2014). To understand how these models might reduce or sometimes increase stigma, we must understand what stigma is and how it works.

Stigma in the context of disability

People who are stigmatized are believed to have one characteristic that denotes them as different (Corrigan et al., 2009; Goffman, 2009). ‘Disability’ in the term ‘persons with disability’ or ‘disabled’ in the term ‘disabled people’ are currently the terms that distinguish people with a wide range of bodily differences while the others are perceived to be able-bodied or even are referred to as ‘normal’ (Dunn, 2010; Thomson, 2017). Although the meaning ascribed to this term depend widely on the society and time (Rhodes et al., 2008), being disabled – either as a result of a medical condition or due to the barriers imposed by the society – has become the very epithet that people with variety of abilities are being attributed by in the society.

A glance through dictionaries reveals that almost all of them define disability as a lack or impairment. The English Oxford Living Dictionary (2018), for instance, describes disability as

A physical or mental condition that limits a person’s movements, senses, or activities.

A disadvantage or handicap, especially one imposed or recognized by the law.

The definitions in the dictionaries are self-evident. If anything, the term that begins with ‘dis’ conveys the message of negation just at the beginning. This ‘term’ implies that people suffer from a serious problem with their ability, which definitely is not the case.

In our personal experience, this is heard over and over that people deny the term ‘disability’ to define their situation. That this term reminds them of words like disorganized and disadvantaged, and that this is not right to call a group of people with variety of abilities, either a ‘person with disability’ or ‘a disabled person’. Nevertheless, this term is so ingrained in our collective cultural consciousness that it seems hard to challenge it. The world report on disability calls disability ‘complex, dynamic, multidimensional, and contested’ (The World Bank & World Health Organization, 2011). Such multifaceted situation is conveyed to people by an ‘either/or’ term, that is, a person either has or does not have a disability (Dunn, 2010; Dunn et al., 2013).

One of the objectives of naming or labeling conditions is to achieve better understanding of their personal and societal impacts as well as the health and care actions needed. Among the 15% of the world’s population who live with some form of the current definition of disability, only 2%–4% face significant limitations in functioning (The World Bank & World Health Organization, 2011). This label provides an inaccurate conceptualization of the condition per se and people’s relation to the society (Stewart, 1991). According to the ‘Social Identity Theory’, people tend to develop their social identity by placing themselves in particular social categories. Stigmatizing stereotypes arise as people categorize themselves in a ‘dis’ group with feebleness. This could to some extent clarify the wide accepted and even normalized bias that people face in the society (Brewer, 1979; Major & O’Brien, 2005).

Stigma affects people through variety of mechanisms: expectancy confirmation, automatic stereotype activation and identity threat (Major & O’Brien, 2005). Expectancy confirmation signifies that stigma affects the stigmatized person via self-fulfilling prophecies (Jussim et al., 2000) that happen when an initially erroneous belief or a false definition of a situation (Merton, 1948, p. 195) leads to its own fulfillment as it evokes a new set of behavior which makes the originally false conception comes true. This can expand well to the field of disability, that is, when people assume they are disabled, regardless of the verity of this thought, they might act as disabled to fulfill this prophecy.

The way people communicate their expectations to others (e.g., parents/teachers to their children/students) has been proved to affect children or students’ own perceptions of ability and achievement. In one study the teachers’ critical awareness and expectancy beliefs were found to be directly associated with teachers’ behaviors, which were in turn related to students’ achievement (López, 2017). Although this not been exclusively explored in relation to children and students who are constantly named as ‘disabled’, this naming might affect both the teachers/parents attitude and expectancies and the students/children behavior.

Disability can become an all-permeating overwhelming taxonomy that obfuscates all other personal characteristics, skills and capabilities (Stone, 1995; Taleporos & McCabe, 2002). Although social movements try to divest disability from the current associated meanings, this might not happen as some meanings are inherent in the structure of this term.

Identity threat is another mechanism by which stigma affects individuals. Major’s model suggests that when people’s construal of their environment is that the situation’s demand exceeds their resources to cope with, the stressors become potentially harmful to their social identity (Major & O’Brien, 2005). In other words, how people interpret social cues and how they perceive other’s standpoints can mediate the effects of stigma. This further emphasizes the role of language in stigma formation, as this is through the language that we communicate a shared understanding of a given situation.

Although language in its essence faces limitation to accurately describe human variations, this term predominantly follows the tradition of society that denotes able-bodiedness as norm. Disability, therefore, is a non-defining nomenclature that can only provide limited information about what a person cannot perform in the way other members of society assume something must get done. This term cannot describe a group of people who have shown astonishing abilities in a wide variety of circumstances.

Being ‘Able’ (which itself does not have a universal definition) is neither necessary, nor enough for having a good quality of life (Albrecht & Devlieger, 1999). What people choose to do with what they have is more important in defining the quality of life than what they actually have (Buntinx & Schalock, 2010; Duggan & Dijkers, 2001; Niemiec et al., 2017). In other words, neither the presence of a disability nor the absence of one does not predict quality of life, which is comprised of many different facets of a person’s life (e.g., mental health, stress level, physical health) (Duggan & Dijkers, 2001; Dunn, 2010).

The role of language

The role of language in defining concepts cannot be overemphasized. People communicate their values, assumptions and expectations through language, and it plays a substantial role in identity formation (Skutnabb-Kangas, 1996; Titchkosky, 2001). The choice of language has a substantial impact on the whole path that people choose for their lives (Mallett & Slater, 2014; Titchkosky, 2001). As Skutnabb-Kangas (1996) states, ‘Language is central for seeing, interpreting, understanding, and changing the world, and indeed in creating the world’. Scrutinizing the choice of language is quite important and needs profound contemplation (Mallett & Runswick-Cole, 2014; Titchkosky, 2001). Language can be either empowering or undervaluing. Names and labels as the symbol of our identity are means of identifying ourselves. Changing names and labels can lead to forming new identities. Naming one’s world differently is often the first step which heads demands for self-determination (Skutnabb-Kangas, 1996).

A brief look at terminology should serve as a reminder of how language has been applied and modified in literature on disability. American Psychological Association (APA) advocates utilizing person-first language to dissociate disability from the identity of people as well as reducing the bias in practice, research, and educational settings (i.e., ‘people with disabilities’, ‘person with an amputation’). Giving primacy to personhood rather than a condition is the key argument. As Dunn (2010) has indicated in ‘the social psychology of disability’ (p. 11), ‘To counter essentialism, people should never be equated with their disabling conditions’.

Disability studies scholars have confronted the exclusive use of person-first language. They recommend also applying identity-first language (i.e., ‘disabled person’) (Dunn & Andrews, 2015) partly because it suggests that this is the society that disables people (Mallett & Runswick-Cole, 2014). Disability, therefore, is not an inherent characteristic, but the result of an oppressive society. Disability culture promoters, moreover, assume that there is a mutual phenomenon, namely the experience of disability, that connects and unites all people with disabilities and try to divest disability from previous meanings (Dunn, 2010; Linton, 1998).

Identity-first language has been criticized to essentialize disability by highlighting one quality over all others (Dunn, 2010; Dunn et al., 2013). The irony in disability culture promoters’ theory is that this new identity can easily be seen as ‘the main characteristic’ of individuals regardless of what meaning they are trying to assign to it. Neither all disabilities are alike, nor do all people with disabilities identify with such identity where individuality is lost in the group. So many factors affect individual’s attitudes toward their own bodies that even people with identical physical impairments are likely to feel poles apart in that matter (Taleporos & McCabe, 2002). Although more in-depth studies are needed, current studies have failed to show that ‘disabled’ identity exists beyond the walls of academic studies (Gilson & DePoy, 2015). People tend to see their disability as one characteristic among many others (Gilson & DePoy, 2015). Even scholars do not consistently identify with such identity (Thomson, 2017).

Another criticism is that this culture essentializes the role of society to a disabling environment. Although society is not still a comfortable and totally accepting environment for people with bodily variations, it is progressing along with the change in the attitude of people that demand their rights to have accessible environment. In other words, for a person who believes that he or she is ‘disable’ or ‘disabled’, it is harder to change the environment according to his or her needs than a person who believes he or she is ‘able’. As every person has capabilities as well as disabilities, the best approach might be that each person see the whole picture of his or her condition; that is, a repertoire of competencies as well as limitations.

Nevertheless, the term disability, either to use as person-first or identity-first language, has endured. As Linton states in her book My Body Politic when talking about a group of people with physical variations, ‘What was clear and uniform across the group was that we had strong desire’ (p. 12). If there is a unique identity across all human beings, it is the desire to live, have equal rights, to be accepted and to have the opportunity to set their own goals and values. Positive psychology can bring this perspective to a new light.

Positive psychology

Focusing on individual’s strength and virtues, feeling content with one’s past and present, and positive institutions that are based on strengths are the main focus of positive psychology (Peterson, 2006, 2008; Seligman & Csikszentmihalyi, 2000). Positive psychology holds that concentrating on strengths, rather than directly approaching a problem, fosters positive self-esteem and self-image (Peterson, 2006). This shift in focus to improving and strength reflects the developments in the field of disability (Buntinx & Schalock, 2010). For example, being able to manage the life with only one hand is a potential strength that can be reinforced. Through cultivating what is best within every single individual, people can achieve a meaningful and fulfilling life (Peterson, 2006; Seligman & Csikszentmihalyi, 2000).

Self-determination is a multidimensional concept. Self-sufficiency, self-regulation and self-realization as well as psychological empowerment are the main features of self-determined behavior (Shogren et al., 2006; M. L. Wehmeyer, 1999). While people generally tend to have dissimilar profiles, youth with ‘disabilities’ often rate themselves lower in all character strength and on other constructs like self-determination (Niemiec et al., 2017; Shogren et al., 2006). This indicates a homogeneity of beliefs that students with ‘disability’ hold about their strength and self-determination (they do not possess adaptive understandings of their strengths). On the other hand, interventions to promote self-determination, which focus on enabling people to act as a causal agent in their lives, can increase levels of self-determination in adolescents with different disabilities (Shogren et al., 2014, 2019; M. L. Wehmeyer et al., 2012).

Although there is no study, of which we are aware of, that directly addresses the issue of labeling students ‘disabled’, knowing about the role of language and its effects on self-determination (Skutnabb-Kangas, 1996), we have to be more careful of how we apply language when talking about people especially in tender ages of childhood and adolescence when their identity is still shaping. Becoming able of thinking, feeling and behaving in ways that advantage oneself and others (increasing character strengths) is an essential feature of positive psychology. The question raised now is: isn’t it more advantageous to believe that someone is capable of fulfilling his or her needs to modify the environment to a more accessible one? Positive psychology suggests that making the most of one’s internal personality strengths through focusing on capabilities is a key element when navigating challenges.

The argument

Different lines of literature suggest that some names and classifications are partly or wholly stigmatizing or counterproductive (Allen & Feigl, 2017; APA, 2013). The good news is, however, they are negotiable. Handicap, for instance, has been extensively removed from the literature (academically and conventionally). In psychiatry, ongoing attempts in changing terms into less stigmatizing ones have proved promising (APA, 2013; Yamaguchi et al., 2017). In Japan, for instance, changing the label of ‘schizophrenia’ to a less stigmatizing nomenclatures – integration disorder – was associated with improvements in attitudes and reducing stigma (Yamaguchi et al., 2017). A survey on the attitude toward renaming ‘Bipolar Disorder’ also showed that more than 50% of families are in favor of this change (Kato & Kanba, 2018).

This might also expand to the term ‘disability’ that begins with ‘dis’ – a means of negation. The prefix ‘Para’, on the other hand, has been used extensively with general acceptance and promising results. This preposition has been utilized with two meanings: altered, and beside or alongside. In the current context, application of para has first appeared in the word ‘Paralympic’. As mentioned in the Official Website of the Paralympic Movement, International Paralympic Committee (2012), ‘The word “Paralympic” derives from the Greek preposition “para” (beside or alongside) and the word “Olympic”. Its meaning is that Paralympics are the parallel Games to the Olympics and illustrates how the two movements exist side-by-side’. ‘Proud Paralympians’ are ‘Para athletes’ with the knowledge and resources to mentor and help others’ development during and after their sporting careers. The vision of International Paralympic Committee (IPC) in this movement is ‘To enable Para athletes to achieve sporting excellence and inspire and excite the world’.

Changing the term ‘disability’ with the neologism ‘Para-ability’ seems logical. The term ‘Para-ability’ or ‘Parability’ can be considered as a more consistent term with the dynamic ICF model (The World Bank & World Health Organization, 2011), as it does not implicate an all or non situation. ‘Para-ability’ neither disavows the present differences, nor overemphasizes them. People with para-abilities can see their situation in a new light – a change in paradigm from ‘lack’ to an ‘alteration’. They experience ‘abilities’ that exist alongside with ‘disabilities’, either in their personal life or social situations. They possess altered abilities (not the ones that we used to think everybody should have to manage his or her life or benefit from a good quality of life). There are yet unknown potentials to be discovered. Altering the current archetype of ‘disability’ might open a new horizon to contemplate. The aim of this change is not to ignore the difficulties people still face in society nor the medical care and rehabilitation that some groups surely benefit from. This change aims to not overexpress one aspect of the life among others.

Through the eyes of positive psychology, it is worth exploring that how children who see differences between their bodies and others can make positive identities through their relationships with their community and how language can affect that identity. People with variety of bodily differences accept their body the way it is, and many even cannot imagine themselves being any different (Linton, 1998). This is the whole that they see and feel, so the language applied should not make them feel any different either. People actively shape their identities in interactions with their societies (Rhodes et al., 2008), and the inherent incoherence in the term disability that starts with a negation prefix and suggests an all or non situation makes a clear first impression. Trying to logically persuade people that this word does not suggest what you first think seems confusing for children who are still shaping their character and stories about the world.

Although unacceptance of the term ‘disability’ or ‘disabled’ is getting more common among people with ‘parability’ and the need to change the word is heard in the society (whether just expressing their need or taking actions such as creating campaigns or petitions), lack of theoretical explanation maybe one reason that these attempts have not received the necessary attention. It is high time that academics get in line with the ‘parabled’ society to hear their voice and explore the reasons behind this need and propose a solution.

Conclusion

This article draws a new outline for an existing paradigm in the society. Observing this arena, there exists a global trend for accepting diversity and the societal claims for inclusion on one hand, and the message delivered by the current language to people on the other hand. Names are transmitting relevant values to what they are constructed of. This could construct either an accepting, empowering attitude or a judgmental, downward one. The term ‘disability’ is entangled with implicit meanings of negation and lack and is a representative of a traditional attitude placing a particularly strong emphasis on absence, even when we accept that this absence is partly imposed by society. Therefore, the need to transition to a less stigmatizing term is sensed.

Movements toward inclusion and acceptance are slow, and progress is directly related to the attitudes held by society. In response to the Hamletian question in the title of this article – to be able or disable – we propose that utilizing the word ‘Para-ability’ instead of ‘disability’ might take the previous attempts in shifting the focus from the defects to enhance positive self-image and improve functionality to the next step.

Investigating the current hypothesis with more in-depth studies seems essential. Exploring para-athletes’ view of self and identity and qualitative studies about the experience of getting called ‘disabled’ versus ‘para-abled’ with focus on the role of this change on identity formation as well as life satisfaction and competency feeling in social situations seems to be the next steps.

Footnotes

Author’s Note

Dusica Lecic-Tosevski is now affiliated with Serbian Academy of Sciences and Arts.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

ORCID iD

S. Bentolhoda Mousavi

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