The concept of "identity" has become both a contested and a fertile field of research and theory in recent years (Watson, 2002). Several assumptions have come into focus: that identity can be structured upon shared social experience; that there are fixed identities of persons with disabilities; and that the self plays a significant role in the formation of identity. However, it is important to understand the rhetoric versus practical realities in order to assess what can free persons with disabilities from fixed identities that have been enforced overtime by regulatory regimes embodied in cultural and societal prejudices.
The gist of this paper is the premise that a person with disability has the capability of constructing a self-identity not constituted in impairment but rather independent of it, and of accepting impairment as a reality that he or she lives with without losing a sense of self. Disability in a socio-cultural context can be defined as "a barrier to participation of people with impairments or chronic illnesses arising from an interaction of the impairment or illness with discriminatory attitudes, cultures, policies or institutional practices" (Booth, 2000). Identity is "the condition of being a person and the process by which we become a person, that is, how we are constituted as subjects" (Kidd, 2001).
Three Conceptualizations in Disability Research
Focusing on Individuals Physical and Intellectual Defects
The traditional view of disability often focuses on the individual, highlighting incapacities or failings, a defect, or impairment. This focus creates obstacles to participation on equal terms since an individual who seems to lack certain capacities may not be able to attain autonomy (Michailakis, 2003:210).
Relativisation of Individual Preconditions
Society often does not take into account the ways in which impairment is part of humanity. Instead, it views the effects of impairment as obstacles. This emanates from the interaction between persons with disabilities and society. Society desires that a person with a disability fit into societal structures, rather than structures fitting into the person's with disability needs. This can be facilitated through legislations that take into account impairments as well as promoting new attitudes towards disability in all areas of society. If society was willing to adapt to impairment through the removal of architectonic hindrances while making laws that recognize human rights, then the effects of disability would be greatly reduced. The solution could be attained through special education, law, and architectural considerations tailored to persons outside the norm of the able-bodied persons.
Disregarding Individual Preconditions
From time to time. contemporary society has regarded impairment as a handicap. In essence, the idea of a "handicap" is a form of discrimination that has social origins (Tossebro, 1997; Michailakis, 2003:211). This creates disadvantages that persons with disabilities experience not necessarily as emanating from some biological determination but rather from socially, culturally, economically, and politically constructed obstacles. Disability becomes equivalent to social oppression within which government policies, state authorities, and institutions (including educational systems) are all key factors in the formation of structures that oppress persons with disabilities. The solution, however, is to give persons with disabilities citizenship rights and change society's material structure, since the oppressive mechanisms that transform impairments to disabilities are enhanced by structures that are embedded in ideas and attitudes of non-disabled persons.
The Essence of Self in Identity Formation
The universal construct of the self is the product of the fact that every human being is aware of his individuality. It is a premise that human beings are consciously aware of their own lives and it is through reflexivity that we become aware of a consciously constructed self. Self is seen as a universal human property, something that we must all possess and a characteristic that we must all develop. Self in this context enables us to reflect on who we are, whom we choose to identify with, and what we choose to do as matters of choice, not compulsion. Group membership in this kind of reflection is no longer synonymous with identity formation. We are able to choose our identity and ignore and even reject identities fostered on us as a result of ascribed characteristics. We do all these by creation of narratives about the self which, provided we can sustain these narratives, work to maintain our sense of self.
In consequence, through this approach, the problems associated with conflating identities into essential, fixed, pre-ordained, singular categories — including the homogenization of persons with disabilities into a singular group and the ascription of a single identity — can be avoided. Our sense of self is constantly evolving and we constantly reconfigure ourselves through multiple identities; time, space, and relationality are all important in identity formation and achievement of the self-concept. Self-concept may be defined as "knowing oneself, accepting oneself with one's limitations, not being ashamed of the limitations but simply seeing them as part of the reality one is in, and perhaps as a boundary one is challenged to expand" (Murugami, 2002:2; Berne & Savary, 1981).
Some Constraints to Identity Formation For Persons With Disabilities
Shahnasarian (2001:276) argues that the self-concept and real challenges that sometimes confront persons with disabilities can have broad implications for personal development in terms of education, career, and community life. The implications might lead to experiences of underachievement and inadequate fulfillment. This argument also raises other concerns about persons with disabilities' lack of self-actualization. This lack may lead to low self-esteem, poor self-image, and negative self-concept. Yet, some persons with disabilities, for instance those with visual impairments, have similar school potentials, mental functioning, and educational aspirations as their non-disabled peers (Mengitsu, 1994:41). Furthermore, persons with disabilities often live a highly structured life. Too often, decisions are made and activities selected for them.
In addition, it is difficult for persons with disabilities to cope with and overcome limitations, practical and emotional, that are caused by impairments without acquiring knowledge and gaining experience in confronting obstacles, meeting challenges, and engaging in activities that develop problem-solving strategies. Moreover, Yanchak (2005:135) argues that persons with disabilities often encounter difficulty forming a secure vocational identity because of self-identity issues rather than decision-making problems.
Reconstruction of Normalcy in Constructions of Self-identity
Watson (2002:519) argues that the self-identity of persons with disabilities can be achieved not through a sidelining of impairment but through a reconstruction of what is normalcy. In this context, a person with disability challenges the social construction of what is regarded as normal and a normal body and embraces the difference of a body with impairment as what is normal to him or her. Self-identity hence becomes a product of a conscious action that questions identity dominated by social ascription.
Challenging social systems, in which persons with disabilities are subordinated through relations that are contradictory to their own views of self, helps persons with disabilities to create self-identities that are far removed from biomedical models that present disability as tragedy. Furthermore, the self-identity created does not necessarily show off difference; is it not about celebrating difference or diversity, or taking pride in identity through labeling, but about defining disability in its own terms, under its own terms of reference (Watson 2002:521).
However, Hughes et al. (2005) argue that identity formation among persons with disabilities is regularly immobilized by the way society constitutes them as strangers in the contemporary world. Exclusionary processes that blight desire and curtail opportunities to participate in contemporary cultures of consumption frustrate persons with disabilities. Young persons with disabilities in particular seem to be very aware of the identity dynamics that reinforce their exclusion (Murray 2002) as well as the ways in which their difference, far from being celebrated as diversity, is used to stereotype them as tragic figures. Constraints upon the development of identity are many, and markets of desire that offer the important trinkets of identity are not always accessible to persons with disabilities. This makes it very difficult to assume an identity other than the one that is "conferred" by impairment.
Moreover, research on identity, self, and disability (Shakespeare, 1996) indicates that persons with impairments or chronic conditions often suffer loss of self; they go through a process during which they negotiate their lives in such a way as to be as ordinary as possible and so retain some contacts with desired life-worlds. These persons become assimilated and have to follow some regulations that will render them acceptable by functioning as normally as possible. This kind of conformity has often been referred to as normalization, but in actual fact it is assimilation since it requires that a person with disability strive to live a life like that of a non-disabled person. In the formation of identity, "self-concept" needs to be reviewed through an analysis of oppressive social relations, with a focus on changing society and empowering persons with disabilities, and not vise versa.
Despite daily experiences of oppressive practices by non-disabled peers, there are persons with disabilities who do not incorporate disability in their identity. They ascribe to themselves the label of a "normal" person and challenge the "biological" self as unimportant as long as they are capable of engaging in life roles as much as the non-disabled persons, in some instances doing more than their counterparts. Hence Watson's (2002:509) surprise when encountering persons with disabilities who in essence portrayed the following idea: "Well, I know this is going to sound very strange to you, but I do not see myself as a disabled person." This person with disability is able to sideline impairment and formulate self-identity based on what he or she is able to do, and not how it is done. If what he or she is able to do is not done, the logical attribution will be directed towards societal and environmental barriers rather than the impairment. This way he or she accepts his or her daily life with impairments as what is normal, as long as restrictive measures are removed.
In addition, when a person with a disability sees himself or herself as person first and disability as just one of the characteristics in his or her personality, he or she realizes that human beings in their totality have characteristics that devalue their personality, and that this is normal to all people. Hence, impairment is reduced to or interpreted as one characteristic that is different amongst several similar characteristics in the human person. This constitutes true normalization. But this approach poses a challenge of its own concerning the illegibility of who should be viewed as a person with a disability. Who decides who has a disability? In its attempt to define disability in the context of The National Convention of Human Rights (2004), the Kenyan draft committee noted that the definition is only applicable to a person if he or she views him or herself as a person with disability. The rejection of disability in this context could take two different routes — either acceptance of disability as a characteristic that does not canvas the personal self, or a denial that is oppressive and robs a person with disability's true identity.
Society needs to acknowledge the sometimes elusive boundary between having impairment and being able-bodied. It should acknowledge that very few of us qualify as fully able-bodied along all dimensions of functioning throughout all of our lives. Hence, impairment should be seen as part of the human condition rather than a basis for setting someone apart, or a characteristic diminishing one's humanness.
Furthermore, the political consequence of not identifying with disability may be seen as self-alienation and inauthenticity. A person with disability need not live in denial of the disability. In fact, the best move is to legitimize it as part of life but not as its central focus. Accepting a disability enables one to reflect on capabilities and limitations so as to balance oneself between the two. The facilitation of such acceptance can be enhanced through observance of the obligations of the UN Convention on the Rights of Persons with Disabilities that urges Nations that are a party to this convention "to take all appropriate measures to eliminate discrimination on the basis of disability by any person, organization or private enterprise" (United Nations Convention on the Rights of Persons with Disabilities, 2006, Article 4 (1) e). The ultimate goal of this convention is acquisition of rights and dignity of persons with disabilities. Legitimizing disability becomes a core to the incorporation of self as a person with disability, rather than being overwhelmed by the disability.
Societal and Cultural Stumbling Blocks to Identity Formation for Persons with Disabilities in Kenya
As much as persons with disabilities may have strived to formulate their self-identity, several stumbling blocks remain.
Assets versus liabilities
Ndurumo (1993) argues that the way a country's society views and values persons with disability, as well as how it allocates its resources, greatly influences the status of the population with disability. It influences whether persons with disabilities become liabilities or assets. In Kenya, persons with disabilities have consistently been viewed as liabilities rather than assets. This perception may have been influenced by the way persons with disabilities have been prepared for life right from school to adult life. Due to low expectations that society has perpetuated from early age, learners with disabilities rarely leave school with a clear picture of what they are capable of contributing towards community life. A study by Irungu (2008) on the nature of guidance and counselling learners with disabilities receive at school found that a majority of learners who fall in the 17-18 age range find it difficult to discover their self-identity and assert independence, or search for goals that would give meaning to their lives (Irungu, 2008:52).
Education provision and all other services have not fully escaped the notion that it is a form of charity to view education as a right for those with disabilities. Persons with disabilities are therefore still relegated to the margins of society. Only manual and poorly paid jobs are open to them. Physical restrictions bar them from public utilities and transport. Societal attitudes, prejudices, and ignorance have continually led to unnecessary institutionalization (Songe, 2004:8; Abagi, 1997). Most young people view the acquisition of work as a major goal since it allows them to live independently of their parents, control their own lives, and take responsibility for their own futures. The demand for independent living for persons with disabilities also needs to be addressed as a right. Restricted early opportunities in work related experiences, dependence on family and teachers, and experiences of academic failure all erode their global self-concept and should be avoided.
Considering that employment plays a significant role in the identity formation and personal well-being of all persons, failure to be satisfactorily engaged in the labor force denies persons with disabilities their right of being assets to their communities. Employment opportunities in Kenya have not focused on persons with disabilities (Osundwa, 2007:6). This main setback could also be the fact that persons with disabilities are ill prepared for work in the formal and informal sector during their schooling and rehabilitation. Acquiring the status of becoming social assets would not only shape persons' with disabilities financial status and social interaction but also boost social self-esteem, which in turn would positively modify self-concept and identity formation.
Stereotypes may have emanated from well-intended imaginations about what persons with disabilities are capable of. However, unfinished explorations coupled with uncalled for generalizations have rendered persons with disabilities slots in society that we can now recognize as stereotypes. Stereotypes tend to homogenize persons without consideration of the uniqueness and diverseness that the persons may present. Most rehabilitation centers are still guided by stereotypes that are obsolescent and most often deny persons with disabilities the rights of career choice. When they fail to acquire career satisfaction, sometimes they abandon the careers they are trained in and engage in street begging, which relegates them to the lower realms of livelihood. Stereotypes are in fact an abuse of human dignity. They tend to assign to persons with disabilities a group identity rather than allowing individuals to formulate a healthy self-concept based on their individuality and uniqueness.
Misconceptions like stereotypes tend to give persons with disabilities attributes that they do not possess. Some of the misconceptions rob persons with disabilities of their aesthetic and identity values. For instance, in a wider social context, youth signifies beauty, hope, potency, vigor, and strength. Since society wants to only appreciate a sound and perfect body, physical attractiveness, independence, and achievement, it then ascribes disability to signify ugliness, tragedy, asexuality, invalidity, and frailty. Consequently, disability and youth are put in great tension since young persons with disabilities have to confront these challenges. Furthermore, since some persons with disabilities cannot meet these values, society downgrades them to a lower position (Huijgevoort, 2002). Hence the researcher's experience with an university male student who said that he knew he would make a very good television newscaster but wondered: "who wants to see a blind man's face on TV?" (Murugami, 2003). Formulating self-identity that will culminate in a healthy self-concept becomes an uphill task, and sometimes persons with disabilities swim with the current to unintended destinations.
Language and disability
The particular ways in which social systems observe and communicate about disability determines how the group is treated and the problems they face. Persons with disabilities are described in a language specific to particular systems. For instance, in the education system they are declared as having learning difficulties or having special needs; on the labor market they are the non-employable or less attractive work force; by artistic or aesthetic standards they are considered ugly; and with regard to social class, they are the less privileged. These labels prevail in almost all spheres of life, including religion.
An indication of the pervasive nature of discrimination is the use of demeaning language while addressing persons with disabilities, further undervaluing their human capabilities. In Kiswahili, for example, the use of object noun such as KI-pofu (blind), KI-wete (crippled) or KI-ziwi (deaf) in reference to persons with disabilities is not amusing at all because "KI" is an object noun in Kenya's national language. Society also regards persons with disabilities as less endowed and tends to magnify a single difference to cover up a multitude of similarities as the order of the day in community life settings. Such references to persons with disabilities as "the less privileged members of our society" or "the disabled members of our society" may not help them formulate positive self-concepts. This kind of language often places persons with disabilities in pitiable positions by shadowing what they need most, namely: "Opportunity Not Sympathy." These existing language patterns cannot enable a person with disability to formulate an adequate self-identity.
Identity, Disability and Rights
Rights are formulated to protect aspects of human dignity. All human beings need rights to survive hard times. Despite the noble function that rights are expected to perform in human life, violation of the same rights is experienced from all directions. Most often the violation becomes so legitimate that the rights of persons with disabilities are seen as privileges and are thus not given adequate recognition. Disability is both a human rights and social issue. Legitimizing disability for the purpose of acknowledging capabilities and limitations becomes vital. Self-identity is more tested in this aspect because unless one is very sure of one's self and has formulated an adequate self-concept, the subject may not be sure of his or her own capabilities and limitations; they may be at a loss as to the relation between the extent of personal rights and self-imposed dysfunctions. Consequences might include misconstruing rights for privileges and seeking a privilege as a right. A true positive identity should be able to distinguish the two and use the same to fight winning battles.
We are able to choose our identity and ignore and even reject identities forced on us as a result of ascribed characteristics. We do this by creation of narratives about the self, and provided we can sustain these narratives we are able to maintain our sense of self. Through this approach, the problems associated with conflating identities into essential, fixed, pre-ordained, singular categories can be avoided, such as the homogenization of persons with disabilities into a singular group or the ascription of a single identity. A person with disability is entitled to enjoyment of human rights and acquisition of dignity through these rights. Developing strong self-identity and a positive self-concept empowers the person with disability to such an extent that fighting for rights emanates from a clear understanding of the self, first as a person and secondly as a member of a group of persons in similar circumstances. The actualization of the self-concept would also enable one to fight for individual rights apart from group rights. Moreover, group membership in this kind of understanding does not affect one's self-identity formation. It has been and will hopefully continue to be a powerful and creative force, but a person with disability will need self-identity first and foremost to become a part and parcel of the wider group or movement. Special education, legislation, the media, and the National Commission of Human Rights can become spearheads in mobilizing the following suggestions, which would alleviate some of the stumbling blocks to identity formation:
- Raise awareness throughout society regarding persons with disabilities, including at the family level, and foster respect for their rights and dignity.
- Through intensive campaigns, combat stereotypes, prejudices, and harmful practices relating to persons with disabilities, including those based on sex and age, in all areas of life.
- Promote awareness of the capabilities and contributions of persons with disabilities by highlighting the achievements of prominent persons with disabilities.
- Support young persons with disabilities in their initiatives in order to facilitate their empowerment, such as Kenya Disability Action Network (KEDAN).
All these are important in facilitating a milieu for the development of self-identity and actualizing a positive self-concept.
- Abagi, J.O. (1993). "The Impact of Kenyan 8-4-4 System on Education of Girls and Woman's Access to Higher Education and Training." Personal Research Project Proposal.
- Baylies, C., (2002). "Disability and the Notion of Human Development: Questions of Rights and Capabilities" in Disability & Society 17, 7 (2002): 725-739.
- Berne, P., Savary, L. (1981). Building Self-Esteem in Children. New York: Continuum Publishing Co.
- Booth, T. (2000). "Progress in Inclusive Education." Paper presented at "Meeting Diverse Educational Needs: Making Inclusion a Reality," World Education Forum, Dakar, 26-28 April 2000.
- Hughes, B. (2002). "Invalidated Strangers: Impairment and the Cultures of Modernity and Postmoderntiy" in Disability and Society 17, 5 (2002): 571-584
- Hughes, B., Russell, R., and Paterson, K. (2005). "Nothing to be had 'off the peg': Consumption, Identity and the Immobilization of Young Disabled People in Disability and Society 20, 1 (2005): 3-17.
- Huijgevoort, T.V. (2002). "Coping with a Visual Impairment Through Self-Investigation" in Journal of Visual Impairment and Blindness 96, 11 (2002): 783-795.
- Irungu, M. (2008). "Analysis of Guidance and Counseling Programme at Thika High School for the Blind." Unpublished M.ED. Thesis, Kenyatta University, Nairobi.
- Kidd, Warren (2001). Culture and Identity: Skill-Sociology. New York: Palgrave and Macmillan.
- Mengistu, L. (1994). "Psychological Classification of Students With and Without Handicaps." M.ED Thesis, Jyvaskylan University, Norway.
- Michailakis, D. (2003). "The Systems Theory Concept of Disability: One is Not Born a Disabled Person, One is Observed to Be One" in Disability and Society 18, 2 (2003): 209-229.
- Murray, P. (2002). Disabled Teenagers' Experiences of Access to Inclusive Leisure. York: Joseph Rowntree Foundation.
- Murugami, M. W. (2002). "Effects of Locus of Control on Self-Concept Among Secondary School Learners in Special Schools." Unpublished M. ED Thesis, Kenyatta University, Nairobi.
- Murugami, M. W. (2003). Personal interview.
- Ndurumo, M. M., (1993). Exceptional Children: Developmental Consequences and Intervention. Nairobi: Kenya Longman Ltd.
- The National Convention of Human Rights (2004), Kenyan draft committee. http://www.un.org/esa/socdev/enable/rights/ahc6kenya.htm
- Osundwa, E., (2007). "The Employment of Visually Impaired People in Kenya." Paper presented at the WBU Fourth Africa Forum on Jamii Jumuishi — Social Inclusion, 6-11 May, 2007, Nairobi, Kenya.
- Shahnasarian, M. (2001). "Career Rehabilitation: Integration of Vocational Rehabilitation and Career Development in the Twenty First Century" in Career Development Quarterly, 49, 3 (2001): 275-283.
- Shakespeare, T. (1996). "Disability, Identity and Difference" in G. Barnes & G. Mercer (eds), Exploring the Divide: Illness and Disability. Leeds: Disability Press.
- Songe, E.O., (2004)."Curriculum Barriers to Successful Inclusion of Students with Visual Impairments: A Case of Kenya Polytechnic in Nairobi, Kenya." Unpublished M.ED thesis, Kenyatta University, Nairobi.
- Tossebro, J. (1997). "Exploring the Divide: Illness and Disability" in Acta, Sociologica 40, 4 (1997): 409-412.
- United Nations Convention on the Rights of Persons with Disabilities (2006). New York: United Nations. http://www.un.org/disabilities/convention/conventionfull.shtml
- Watson, N. (2002). "Well, I know this is going to sound very strange to you, but I do not see myself as a disabled person" in Disability and Society 17, 5 (2002): 509-527.
- Yanchak, K. (2005)."Relation of Disability Type and Career Thoughts to Vocational Identity" in Rehabilitation Counseling Bulletin 48, 3 (2005): 130-138.