Don't Judge a Book By Its Cover: Contextual Antecedents of Identity Complexity in Individuals with Developmental Disabilities

Background and Purpose:  Identity complexity is shaped by various social contexts to which an individual is exposed, creating a multiplicity of identities over the course of the lifespan. Identity structures of individuals with developmental disabilities (IWDD) are likely to be more complex when they have multiple exposure to various activities, roles and ideas. Identity complexity is believed to be protective for individuals in the face of social and situational challenges.  Identifying some mechanisms that enhance the complexity through the richness of exposures may allow social workers to promote self-determination, self-expression and improved life quality experiences among individuals with multiple disabilities. 

Research questions include:

1)  How do IWDD make meaning of their identity?

2)  How does the disability identity manifest itself within their multiplicity of identities? 

3)  What types of experiences enhances life quality and self-perceptions for IWDD?

Methods: Qualitative in-depth interviews were conducted with a purposive sample of 20 IWDD (aged 19- 56) diagnosed with: Lesch-Nyhan Disease, cerebral palsy or spina bifida.  Cognitive levels varied from average intelligence to mild cognitive impairment.  Communication styles varied; some had high ability to verbally express themselves, others were non-verbal by conventional means but able to communicate by assistive technology. The interviews focused on their experiences with having disability and the perceived impact on their life quality. Interviews were audio-recorded, transcribed verbatim and coded in ATLAS-ti.  Open coding, constant comparison and thematic analysis were utilized to generate theory surrounding the processes involved in the development of self-perceptions. Member checking, memo-ing and outside reviewers were used to triangulate data and provide this investigation with strength and rigor.

Findings: Three overarching processes emerged which operate at intra (self-perceptions) and interpersonal (from both familiar i.e. family/caregivers and unfamiliar i.e. unknown people in the community) levels: 

1. Recognition (cognitive response)

2. Rebound (emotional response)

3. Reconciliation (behavioral response)

The core category:  'Desire for Acceptance/Integration' reflects the reflexive interactions of processes impacting self-perceptions and life quality for IWDD.  A typology which specifies resolution of tasks at intra and interpersonal levels across cognitive, emotional and behavioral domains is derived from the data. The ‘disability identity’ is a prominent self-perception encapsulating most of their other roles and attributes both positive and negative.  Involvement in varied community/social/artistic activities enhanced cognitive self-appraisals.  Participants sought 'Acceptance/Integration' by familiar and unfamiliar others as an ultimate goal.  When achieved, this was reported to enhance IWDD's life quality. 

Conclusion and Implications: Communication deficits and cognitive impairment of participants impacted the interview process yielding implications for interpersonal communication styles and ultimately community integration (a universal goal for all of the participants).  Findings underscore the importance to IWDD of achieving social acceptance in the community.  This study provides information on specific social/communication barriers impacting interpersonal relationships and societal attitudes.  By becoming aware of previously unacknowledged barriers, social workers can develop strategies to educate, counsel and ultimately facilitate interpersonal relationships enabling successful community integration.