NADD Bulletin Volume XII Number 1 Article 1

Complete listing

Identify Development, Intellectual or Developmental Disabilities, and Person-First Language

Daniel J. Baker, Assistant Professor of Pediatrics; Randolph Wolf Shipon, Psychological Services ; North Jersey Developmental Center

For further information, please contact Dr. Baker at: dan.baker@umdnj.edu

 

What is identity development?

 

Who am I? What am I to do in life? These are two of the central questions in the development of a unique identity. Identity development is among the most important developmental task of life, beginning in infancy, but often being resolved during adolescent years. It must be noted that adults also experience a continually forming sense of self. Identify development is never complete. Erikson identified the goal of adolescence as achieving a coherent identity without confusion regarding identity (1959). Identity often is often accepted to include physical and sexual identity, occupational goals, religious beliefs, and ethnic background. The presence of intellectual disability is a relevant aspect as well.  The purpose of this paper is to propose that intellectual disability plays a role in identity formation as well, and explore relevant topics in identity formation.

Previous research highlighted the sense of shame involved in the identity development in individuals with mental illness, as a form of disability, with anecdotal accounts of people arriving at life-affirming conclusions regarding disability status (Onken & Staten, 2000).  The following paper is intended to present a parallel model of identity development for people with intellectual disabilities.

 

How does identity development occur in typically developing people?

 

Identity forms through the accumulation of experience and the integration of experiences and interpretations of experience. These experiences begin in infancy when children begin to recognize themselves.  Bullock and Lutkenhaus (1990) noted that two-year-olds who see themselves in a mirror with a dot on their nose will then touch their noses. They recognize the image in the mirror as being them, early evidence of the understanding of self. Language use at this age similarly reflects the development of the sense of self, as does representational play (Bullock and Lutkenhaus,1990).

During later childhood, the sense of identity further develops, and often is often described in terms of qualities, skills, and characteristics. While this pattern continues into adulthood, where it often includes a focus on various social roles, in younger children the terms are simple, concrete and unitary; , and in older children becominge more abstract (Berg, 1999). 

What are the theories of identity development?

 

The theoretical explanations of identity development are largely based on the work of Erikson (1959) and his model of eight stages of psychosocial development. These models follow a developmental pattern across increasing age, and are presented in Table 1. Of particular note on the topic of identity development is the challenge Erikson notes for adolescence: identity versus identity confusion. In this task, adolescents must define themselves, involving an integration of the concrete, activity-based images of childhood with present self-awareness and visions of adult life (Widick, Knefelkamp, & Parker, 1978). This requires a self-image that includes a degree of stability across life and experience (Erikson,1959). Erikson (1968) describes development as “epigenetic,” meaning that the each stage of development could not be initiated until the prior stage was completed successfully. Thus, a failure to appropriately succeed as an adult could result from incomplete resolution of each stage of development.  

 

Table 1. Erikson’s 8 Stages of Identity Development

 

Identity Stage Crisis   

1. Learning Basic Trust Versus Basic Mistrust (Hope). Age: Infancy through the first one or two years of life. The child develops trust, security, and  optimism.  Unsuccessful resolution of this crisis results in becoming , well-handled, nurtured, and loved, develops trust and security and a basic optimism.  Badly handled, he becomes iinsecure and mistrustful.   

2.  Learning Autonomy Versus Shame (Will). Age: early childhood, probably between about 18 months toor 2 years and 3½ to 4 years of ageThe child becomes self-assured, independent, and proud.  Unsuccessful resolution of this stage results in continuation of The "well-parented" child emerges from this stage sure of himself, elated with his new found control, and proud rather than ashamed.  Autonomy is not, however, entirely synonymous with assured self-possession, initiative, and independence but, at least for children in the early part of this psychosocial crisis, includes stormy self -the willfulness, tantrums, and  will, tantrums, stubbornness that characterize early periods of this stage. , and negativism.  For example, one sees may 2 year olds resolutely folding their arms to prevent their mothers from holding their hands as they cross the street.  Also, the sound of "NO" rings through the house or the grocery store.

   

3.  Learning Initiative Versus Guilt (Purpose). Age: From about 3½ in the United States to entry into formal school at age 5.The healthily developing child learns to be imaginative, to engage in : (1) to imagine, to broaden his skills through active play of all sorts, including fantasyrepresentational play, and to  (2) to cooperate with others. Unsuccessful resolution of this stage results in  (3) to lead as well as to follow.  Immobilized by guilt,  fearfulness, dependence, and he is: (1) fearful (2) hangs on the fringes of groups (3) continues to depend unduly on adults and (4) is restricted both in the development of play skills and in imagination.  

   

4.  Industry Versus Inferiority (Competence). Age: from 5 to Junior High School or Middle School, typically at 12.THere the child learns to masters skills such as  the more formal skills of life: (1) relating with peers, engaging in games with significant rules, such as sports according to rules (2) progressing from free play to play that may be elaborately structured by rules and may demand formal,  teamwork, , and discipline association with academic study. such as baseball and (3) mastering social studies, reading, arithmetic.  Homework is a necessity, and the need for self-discipline increases yearly.  The child who, because of his successive and successful resolutions of earlier psychosocial crisis, is trusting, autonomous, and full of initiative will learn easily enough to be industrious. Unsuccessful resolution of this stage results in However, the mistrusting child will doubt the future. The shame, - and guilt-filled,  child will experience defeat, and inferiority.   

5.  Learning Identity Versus Identity Diffusion (Fidelity). Age: from about 13 or 14 to about 20The child, /now an adolescent can , learns how to answer answer satisfactorily and happily the question of "Who am I?"  But even thewith periods of “psychosocial moratium, during which best-adjus the is ted of adolescents experiences some role identity diffusion, : most boys and probably most girls experiment with minor delinquency, and ; rebellion flourishes; self-doubts flood the youngster, and so on.

Erikson believes that during successful early adolescence, mMature time perspective is developed and s; the young person acquires self-certainty as opposed to self-consciousness and self-doubt.  He comes to experiment with different — usually constructive — roles rather than adopting a "negative identity" (such as delinquency).  He actually anticipates achievement, and achieves, rather than being "paralyzed" by feelings of inferiority or by an inadequate time perspective.  In later adolescence, clear sexual identity - manhood or womanhood - is established.  Unsuccessful resolution of this stage results in the lack of development of these features of adulthood.The adolescent seeks leadership (someone to inspire him), and gradually develops a set of ideals (socially congruent and desirable, in the case of the successful adolescent).  Erikson believes that, in our culture, adolescence affords a "psychosocial moratorium," particularly for middle- and upper-class American children.  They do not yet have to "play for keeps," but can experiment, trying various roles, and thus hopefully find the one most suitable for them.  

6.  Learning Intimacy Versus Isolation (Love). Age: Young adulthood.The successful young adult, for the first time, can experiences true intimacy - the sort of intimacy that makes possible good marriage or a genuine and enduring friendship. Unsuccessful resolution of this stage results in isolation.  

7.  Learning Generativity Versus Self-Absorption (Care). Age: Adulthood.In The adult exhibits hood, the psychosocial crisis demands generativity in family life and in work. Unsuccessful resolution of this stage results in , both in the sense of marriage and parenthood, and in the sense of working productively and creatively.lack of generativity.

8.  Integrity Versus Despair (Wisdom)

The adult If the other seven psychosocial crisis have been successfully resolved, the mature adult develops the peak of adjustment; integrity, with .  He trust and s, he is independence. The adult finds t and dares the new.  He works hard, has found aa well - defined role and self-concept in life. , and has developed a self-concept with which he is happy.  He can be intimate without strain, guilt, regret, or lack of realism; and he is proud of what he creates — his children, his work, or his hobbies.  If one or more of the earlier psychosocial crises have not been resolved, self he may view himself and his life may be viewed with disgust and despair.

 

 

 

 

 

 

 

 

 

 

 

 

James Marcia built upon Erikson’s seminal work in his subsequent efforts to understand identity development. Marcia (1991) postulated that identity development involves two steps: (a) breaking away from childhood beliefs to explore alternatives for identity in a particular area, and (b) making a commitment to individual identity in that area. The degree of commitment in an area leads to the resolution of identity formation tasks, with four identity types/statuses: Foreclosure, Identity Achievement, Moratorium, and Identity Diffusion. Table 2 defines these identity types.

Table 2

 

Identity TypeDefinition   

Foreclosure StatusCommitment is made without exploring alternatives based on parental ideas and beliefs that are influence accepted without question.   

Moratorium StatusAdolescents begin to question their ideas and and beliefs with active exploration of alternatives, such as participation in different communities of faith, . This may be reflected in attending different churches, changing college majors, or trying out different social roles or careers.  

Identity AchievementAThe adolescents has explore d and committed to important aspects of his or her identity.

   

Identity DiffusionThe individual experiences neither crisis nor commitment and ; he or she has not actively engaged in exploration, and is not concerned about that..

 

Other models of identity development have been generated (e.g., Giele, 1982) that include timing as the driving force behind identity development and opposed to stages of growth. Timing models do not assume an overall developmental sequence and postulate that development occurs from the accumulation of life experiences such as graduation or the establishment of long-term relationships. It is impossible to do a quick review of identity development without also considering the role of the existentialist view of discovering the meaning of life. Frankl’s classic book “Man’s Search for Meaning” (1946) and Rollo’s work in Existential Psychology (1967) lend credence to the argument that the attribution of meaning to events and life contribute to the generation of a personal identity.   A key concept related to identity formation in people with intellectual disabilities is that these works emphasize immersion in a normal daily routine, where this meaning may be found.  This is completely in line with general principles of positive behavior supports (Horner, et al., 1990) and supported employment (Nisbet & Hagner, 1988).  

 

What is IDD?

Typical definition. According to the World Health Organization (citation needed1976, with subsequent revision), intellectual disability is a condition of arrested or incomplete development of the mind characterized by impairment of skills and overall intelligence in areas such as cognition, language, and motor and social abilities. Intellectual disability can occur with or without any other physical or mental disorders. Although reduced level of intellectual functioning is the characteristic feature of this disorder, the diagnosis is made only if it is associated with a diminished ability to adapt to the daily demands of the normal social environment.

 

AAMR 1992/2002 Definition. Intellectual disability is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before the age of 18. Intellectual disability is the currently preferred term for the disability historically referred to as mental retardation. Although the preferred name is intellectual disability, the authoritative definition and assumptions promulgated by the American Association on Intellectual and Developmental Disabilities (AAIDD,  and previously, AAMR) remain the same as those found in the Mental Retardation: Definition, Classification and Systems of Supports manual (Luckasson et al., 2002).

AAIDD’s position is that when using the AAIDD definition, classification, and systems of supports, professionals and other team members must evaluate limitations in present intellectual and adaptive behavior functioning within the context of the individual's age, peers, and culture. Assessors also must take into account the individual's cultural and linguistic differences as well as communication, sensory, motor, and behavioral factors. A key point of this definition is that limitations in functioning often coexist with strengths within an individual. As limitations are noted, this definition includes the need for descriptions of the limitations for the purpose of developing an individualized plan of needed supports. The care provision team must then provide appropriate, personalized supports to improve the functioning of a person with intellectual disability (Luckasson et al., 2002).

 

How does IDD effect identity development?

As noted previously, the accumulation of experience is considered to be a significant driver for the development of a unique sense of identity for stage theories of identity development. Many youth with ID have lower rates of activity, and particularly social activity, than the general population (Matheson, Olsen, & Weisner, 2007). As such, it is logical that the development of identity may occur at a slower rate than noted in the typical population. Social activity factors may be of great concern, as most stages of identity development in Marcia’‘s and Erikson’s theories involve some degree of social life. For example, learning Iintimacy versus Iisolation requires  cContact with others during which one learns that social relationships are positive and supportive. Similarly, one compares isolation versus contact, and learns that intimacy is preferable.

A second factor specific to persons with ID which is relevant to identity development is the fact that due to the very nature of ID, experiences which are important to the development of identity may be more difficult to understand or interpret to for the individual. . As noted previously, successful resolution of Erikson/s intimacy versus isolation stage requires the cognitive ability to attach meaning and valence to events and then compare the relevant stiumulus categories of alones and together, which may be beyond the cognitive scope of some individuals with intellectual or developmental disabilities.

Of particular concern is the potential lack of inductive reasoning skills which allow for generation of identity. Inductive reasoning involves the coding of multiple, similar exemplars into a common rulecategory. As relating to the development of identity, a person may induce multiple features of self into a unified sense of identity; for example, entering into Marcia’s Identity Achievement status in regards to religion requires examination and commitment to membership into a certain religion. This necessitates using inductive reasoning to organize the different elements of religious belief into the statement, “ I am a Christian [or other religion].”

A third factor specific to persons with ID is the fact that many persons with ID have a pattern of compliance and pleasing others  [cite Henry Cobb on recommendation of Deborah Spitalnik – however a google search does not find any info regarding him so I will have to ask]. This pattern is of specific concern in Marcia’s theories of identity development, as that would indicate that persons with IDD are more likely to remain in Identity Foreclosure status.

 

These three factors indicate that it is likely that persons with IDD will move through stages of identity development at a slower or different rate from persons in the general population.  This requires the organization and delivery of identity-related supports and counseling for persons with IDD across the lifespan.

 

Study of Identity Development in Diverse Groups

 

The bulk of consideration ofs for patterns of Identity Development for diverse groups have occurred in examinconsideration of youth with alternate sexual preferences, relating primarily to sexual identify;, and with youth from different racial or cultural backgrounds living in the United States or Western Europe.  Each of these situations involves youth who live in cultures where most people are different. In regards to sexual identity, most adolescents spend very little time on consideration of sexual identity. Identity achievement in this area is rapid.  However, this is not true for adolescents with an alternate sexual preference, which often carries the threat of stigma and even violence. This cultural context makes forming a sexual identity a significant challenge for youth with alternate preference. Following the pattern of identity development in general, a member of this group may experience a period of confusion and exploration before accepting and committing to an identity. Adolescents who do not complete this process may feel isolated and guilty. Erikson notes clear sexual identity as critical to the stage of intimacy versus isolation.

Similarly, youth from diverse backgrounds must decide the degree to which their racial or cultural background will be part of their identity (Phinney and & Kohatsu, 1997). In the face of disenfranchisement, adolescents from diverse ethnicities and cultures may identify with dominant cultures or completely avoid the issue, leading to Marcia’s statuses of foreclosure or diffusion. The most positive outcome appears to be achievement of a bicultural identity that allows the adolescent to function effectively in either setting (Phinney and & Kohatsu, 1997).

 

Embracing IDD As A Feature Of One’s Identity

 

This leads us to a very significant question: should people be encouraged to embracing IDD as a feature of one’s identity if it exists? If we consider the previous section of this paper, we see that race or ethnicity is considered a part of one’s identity. If one is from a non-dominant race or ethnicity, understanding of the role of those features in one’s life is seen as a developmental task that is related to identity development. In a similar vein, a person who has a “diverse” sexual orientation also must understand the role that preference plays in life, and Identity Achievement status, using Marcia’s framework, is incumbent on achieving exploration and commitment to that aspect of identity.  Deaf persons often choose to be part of Deaf Culture rather than being part of Hearing Culture (Jones, 2006).

 

The critical question at this juncture is how the field of disability supports might consider and address issues related to identity development. In the first part of this paper, we considered the question of identity development in persons with IDD, and after outlining the manner in which typically developing persons generate a sense of identity, we reviewed reasons why a person with IDD might have more difficulty with the development of a sense of identity. It is evident that instruction regarding identity must be included in curricula for students with IDD. Content on development of identity could be included in life-skills classes for students with IDD and in self-advocacy clubs for students with IDD. As noted earlierpreviously, due to paucity of experience and slower rates of learning, identity development may be a lifelong task for persons with IDD, even to a greater degree than that noted in typical adults, and should become part of adult support for persons with IDD through psychological services or governmentally-funded activity programs for persons with IDD. Municipal or regional mental health or recreation programs could offer group meetings, classes, or clubs for persons with IDD in which topics related to identity are explored.

A critical role for care providers and families exists in the need to support persons with IDD in the development of a healthy, accurate self-identity. Content regarding the nature of identity and the role of IDD in identity should be embedded within school curriculua and natural points of contact between the individual, his or her family, and educational/care provision entities. These points of contact could include registration with state service agencies and medical appointments. A person with IDD clearly must understand the nature of disability and the role it plays in life, and integrate that into their identity, hopefully experiencing pride in critical features of their identity, including disability.

 

Strategies to support the development of identity in the general population have been developed and often are empirically validated. These include psychotherapy (Yalom, 1990), counseling  strategies such as Narrative Therapy (White, M. & Epstein,  D. (1990).), and cognitive-behavioral treatment strategies such as Dialectical Behavior Therapy (DBT) (Linehan, 1993).  However, it is equally evident that these psychological support strategies are likely to be ineffective for persons with IDD without significant adaptation. DBT in particular has been a source of discussion regarding possibilities of adaptation  for this (Charlton, 2006). Morasky (2007) has provided an excellent description of strategies for adapting psychological intervention for persons with IDD, including modifying speed, number, abstraction, and complexity.

 

Inclusion of Disability Into Identify 

 This leads us to the most critical question of this paper: Do we teach people with IDD that their IDD is a part of their identity or do we minimize the experience of having an IDD on one’s identity?  As a topic related to identity development, it must be recognized that persons with IDD should be led in an exploration of the nature of IDD as a feature of one’s identity. As IDD is a lifelong condition, it should be seen as a part of one’s life, and as such, an integral part of one’s identity. As discussed previously in this article, race/ethnicity is a part of one’s identity, and for proper development of identity, must be integrated into one’s sense of self. Those are interesting correlates for the tasks facing a person with IDD, as the general population does not have that feature, and understanding of this is a developmental task for persons of diverse race/ethnicity. Youth with differing sexual orientations face a similar challenge. Does one embrace differing sexual preference or ignore it? Should it be minimized?

A risk exists in the form of simply ignoring the presence of IDD. If it is accepted that disability is a lifelong condition that does effect the person, ignoring or minimizing the disability is ignoring who the person is. Effective identity development, as noted previously, does require that the person understand who he or she really is. It is common to hear disability explained to persons with IDDD and their families with phrases such as, “we all have a disability.” While it is true that all persons have conditions that impact their life, the salience of conditions such as nearsightedness and an autism spectrum disorder can not be compared.

An additional feature of this self-knowledge is a recognition of positive attributes association with an IDD. Disability often is considered as a unitarily negative condition, defined as absences of functional ability. It must be recognized that there are positive characteristics of IDD syndromes. Dykens (2006) presents a fascinating review of these positive attributes, including position emotion and Down Syndrome, and Stregnth and Flow with Williams Syndrome.

Disability services often seek to minimize the presence of disability. This makes sense when one attempts to address barriers to community life. The lack of curb cuts presents a challenge to community mobility, and should be minimized by mandating curb cuts and ADA compliance. However, we also minimize the personal experience of disability by rarely discussing it with persons with IDD or other disabilities. In the workplace, mentioning of disability is discouraged as it might lead to lawsuits. The very language we use to refer to disability minimizes the experience. Person-first language is desirable for reducing the linguistic emphasis on disability, but may serve to minimize acceptance of disability as a crucial part of one’s life.  Other disenfranchised social groups have claimed their difference as a significant part of their lives and a source of pride, demonstrating this in the names of social groups, magazines, and music groups. With persons who have IDD, however, this has not been seen. While it is understood that person first language is to be used for social reasons, perhaps in non-public venues, pride in IDD can be supported and taught. This can occur on both an individual and a collective basis.

 

 

 

References

 

Berg, L. Developmental Play Stages in Child Identity Construction: An Interactionist Theoretical Contribution. International Journal of Early Childhood, v31, n1 p11-24.

Bullock, M., & erry, and Paul Lukenhaus, P. (1990). "Who Am I? The Development of Self-Understanding in Toddlers. "Merrill-Palmer Quarterly, 36,  (1990):217-238.

Charlton, M. (2006). Dialectical Behavior Therapy for Children with Developmental Disabilities, NADD Bulletin, 9, 90-93.

Dykens, E. (2006). Toward a positive psychology of mental retardation. American Journal of Orthopsychiatry, 76, 185-193.

Herdt, G. (1989)ilbert, ed. "Introduction: Gay and Lesbian Youth, Emergent Identities, and Cultural Scenes at Home and Abroad." In Gay and Lesbian Youth. New York: Harrington Park Press, 1989.

Horner, R. H., Dunlap, G., Koegel, R. L., Carr, E. G., Sailor, W., Anderson, J., Albin, R. W., & O’Neill, R. E. (1990).  Toward a technology of “nonaversive” behavioral support. Journal of the Association for Persons with Severe Handicaps, 15, 125-132.

Jones, M. (2006). Tarnished Haloes and Crooked Fences: A journey into the world of the Deaf and hard of hearing.  Surdus Publications: Vineland, NJ. 

Kail, R.obert V., and & John C. Cavanaugh, J. (200). Human Development: A Lifespan View, 2nd edition. Belmont, CA: Wadsworth, 2000.

Marcia, J. (1991). ames. "Identity and Self-Development." In Richard Lerner, Anne Peterson, and Jeanne Brooks-Gunn eds., Encyclopedia of Adolescence (Vol. 1). New York: Garland, 1991.

Matheson, C., Olsen, R, & Weisner, T. (2007). Friendship among adolesceencets with disabilities. American Journal on Mental Retardation, 112, 311-400.

May, R. (1967) Psychology and the Human Dilemma. New York: W. W. Norton.

Mondimore, Francis M.A  (1996).  Natural History of Homosexuality. Baltimore: John Hopkins University Press, 1996.

Morasky, R. (2007). Making counseling/therapy intellectually attainable. The NADD Bulletin, 10(3), pp. 58-62.

Nisbet, J., & Hagner, D. (1988). Natural supports in the workplace: a reexamination of supported employment. Journal of the Association for Persons with Severe Handicaps, 13, 260-267.

Onken, S. J., and Slaten, E. (2000) “Disability Identity Formation and Affirmation: The Experienes of People with Severe Mental Illness.” Sociological Practice, 2(2), 99-111.

Phinney, J. & ean, and E. L. Kohatsu, E. (1997). "Ethnic and Racial Identity Development and Mental Health." In John Schulenberg, Jennifer Maggs, and Klaus Hurrelmann (Eeds.)., Health Risks and Developmental Transitions during Adolescence. Cambridge, Eng.: Cambridge University Press, 1997.

Whitbourne, Susan. (1987). "Personality Development in Adulthood and Old Age: Relationships among Identity Style, Health, and Well-being." In K. W. Schaie (Eed.), Annual Review of Gerontology and Geriatrics (Vol. 7). New York: SpSpringer, 1987.

Yalom, I.  (1980). Existential Psychotherapy., New York, Basic Books

White, M. & Epstein, D. (1990). Narrative Means to Therapeutic Ends., Adelaide, Dulwich Centre

World Health Organisation. Document A29/INFDOCI/1, Geneva, Switzerland, 1976

Youth Indicators. "Trends in the Well-being of American Youth."Washington, DC: U.S. Government Printing Office, 1993.