Author’s Note
Asrts of the De La Salle University-Taft, Manila, in partial fulfillment of the requirements for the
CHAPTER 1
Introduction
Over the course of the life span, one of the prime goals of an individual is developing a
firm identity. Identity is formed through socialization processes that an individual encounters
throughout his or her lifespan (Brown, 2008). Stability in one’s identity is ideal for typical adults.
On the other hand, for individuals with disabilities, a lot of factors come into play in considering
the development of their identity in comparison to their typical counterparts. An identity roots
from one’s self, encompassing personality traits, social roles, and dynamics between an
individual and the groups he or she is exposed to (Dunn and Burcaw, 2013). More often than not,
these social interactions greatly influence how individuals with disabilities perceive themselves,
later on translating into the basis of the identities that they have been forming. In the past,
individuals with disabilities are seen as flaws to society; individuals who do not have the right to
neither live nor take part in the affairs that typical people engage in (Global Down Syndrome
Foundation). Individuals with Down Syndrome are still continually experiencing discrimination
and inferiority. In progressive countries such as Denmark, Italy, Germany, France, and
Switzerland, 90% of Down Syndrome fetuses are being aborted as soon as detected in the womb.
The goal of these countries is to be “Down Syndrome free”, as rates shoot up, already
The present era demands acceptance and inclusion of individuals with disabilities. The
perception towards individuals with disabilities had to be amended. Through the years, there
have been numerous studies focusing on how these individuals develop cognitively, socio-
emotionally, and physically. Because of the rise of movements that champion rights for
individuals with disabilities, there has been a trend on looking into the development of their
3
Positive Disability Identity Development
identities; more commonly known as studies on disability identity formation. There have been
models such as the Social Model of Disability (Hunt and Home, 1970) and the Disability Identity
Development Model (Gibson, 2005) that aimed to justify the necessary perceptions and stages of
disability identity development. However, it has been observed that these models posit the
necessity of going through grievance or anger towards disability. From this impression arises a
need to create models that illustrate and encourage positive disability identity development
The current study aims to create a Model of Positive Identity Development. Adults with
Down Syndrome have been chosen to be the prime participants of the study, as a groundbreaking
research revealed that individuals with Down Syndrome are among the happiest individuals
existent (Skotko, 2011). The study suggests that this happiness springs from their life
satisfaction. This innately positive disposition of individuals with Down Syndrome would
appropriately place the tenets that would make up a model of positive disability identity
formation. This innate trait of happiness with individuals with Down Syndrome could be
after all, includes the adaptation of an individual to his or her disability. It is a process that
includes all domains of development to reach an “optimal state of well-being” (Bogart, 2004).
Benchmarking this common trait of individuals with Down Syndrome as the driving variable that
could lead to a positive disability identity development model would address the need of a model
that omits negative factors such as anger and frustration (Shakespeare, 2010).
4
Positive Disability Identity Development
society called for a need to create a progressive model of identity formation (Swain and French,
2004). In this section, the definition of disability would be viewed through two lenses—the
medical perspective and the sociological perspective. Currently, research provides several
models of disability identity formation. The widely used models of identity formation are
provided in this chapter. Furthermore, details about the current state of Down Syndrome are
included to explain the necessity to create a model based on individuals with the mentioned
condition.
Disability
“other” in society. The concept is divided into two perspectives—the medical perspective, and
the sociological perspective. Coming from the medical perspective, Lawson (2001) describes
individuals with disability as people who have intellectual and sensory impairments. It is
pictured out as a biological phenomenon that focuses on the physical differences of individuals.
people who have incapabilities that need to be fixed. It brings about abnormalities, damages, and
impairments that need to be addressed by the medical field (Albert, 2004). This perspective,
then, causes social oppression, marginalization, and segregation amongst people within a society
(Shakespeare, 2010).
5
Positive Disability Identity Development
individuals according to their condition. Because of this, there has been a collective development
The change of the modern times imposes a demand for complete understanding and
acceptance of individuals with disabilities. It is expected that through the continuous process of
disability identity formation, individuals with disabilities would be able to define themselves
through one perception of their personality (Fillingham, 2013). Disability identity formation has
been equated to self-concept of disabled individuals, placing self-esteem, group identity, and
self-efficacy under the umbrella of disability identity formation (Bogart, 2004; Forber-Pratt,
Lyew, Mueller, and Samples, 2004; Ittyerah and Kumar, 2007; Maxey and Beckert, 2016). In a
study that made use of a mixed-methods approach to predict self-identification with disability,
there were notable findings that emerged in the two sets of studies. The first study made use of
it has been revealed that those with severe conditions were more likely to identify themselves as
disabled, as well as those who are unemployed. Furthermore, the second qualitative study
revealed the following categories: shaped, visibility, and accommodations. According to the
study, those whose identities were shaped or influenced by their condition identified with their
disability more. Participants whose disabilities were visible also easily identified themselves as
disabled. Individuals who were exposed to accommodations because of their disabilities also saw
themselves as part of the disabled community. The results from this study show that the more
(Rottenstein, 2013). It has also been observed from the quantitative study that association with a
disability identity is constituted by negative social perceptions, consistent with the observation of
Shakespeare (2010) that disability identity formation models and processes are generally
negative.
There is a need for individuals with disabilities to construct personal narratives that speak
2005; Ittyerah and Kumar, 2007). Fillingham (2013) identified three themes in his study on
disability self-dientity. It has been revealed that there is a need to negate a “new” identity given
their disability. The foundations of one’s self-identity are all about personal attitudes that are
formed by different interactions that encourage positive self-esteem (Kelly, n.d.; Forber-Pratt, et.
al, 2017). A study by Evans (2016) points this out as a life history methodology, looking into the
past experiences of individuals to establish the development of a person’s current state. The
aforementioned study has concluded that without exposure to an advocacy or encounters with
individuals or groups with common causes, it is more likely that an individual would perceive his
or her disability as limiting and preventing one from living a normal life (Evans, 2016).
The continuous recognition of the individuality of people who are differently abled strive
to reach the peak of normalizing perceptions towards disability (Galvin, 2005). Several models
materialized to address this need to fully understand them. This paved the way for disability
identity research. The recent emergence of the integration of persons with disabilities in society
has sparked interest in studying possible overarching processes through which these identities are
formed.
One of the dominant models of disability identity development is Forber-Pratt and Zape's
(2014) Disability Identity Development Model, which revealed themes that provide the backbone
7
Positive Disability Identity Development
in understanding disability identity. The study on college students with disabilities was
concluded with four tenets to contribute to the framework. The Acceptance Status refers to the
first turning point in the life of PWD’s wherein one who was born or who has acquired a
disability progressively recognizes and accepts him or herself having a condition. This also
includes being surrounded by support through family and friends. Relationship Status refers to
finding other people who have the same condition and connecting with them, creating
connections that would further hone their individual identities. This would then lead to the
Adoption Status wherein belonging in a group would allow these individuals to adopt
mannerisms, beliefs, and cultures. The Engagement Status talks about how a person reaches a
"peak" in his or her disability identity development. This is when one becomes a role model and
imparts to those who have the same condition, paving the way for mentorship. Murugami (2009)
individual preconditions, respectively. This model views disability as an interaction between the
perspectives towards individuals with disabilities and the society in which the individual belongs
to (Murugami, 2009). An emphasis on the self, being a crucial factor to identity formation has
also been pointed out, positing that the essence of the self lies in choice. Individuals are free to
accept or deny identities established by those around them. In a study on the personal
constructions of disability and identity, it has been pointed out that the identities of individuals
with disability are impossible to codify, as their identities depend on their idea of self-meaning
(Johnstone, 2004). There were five identities that emerged from the study. Disempowering
identities refer to people who are confined within the social stigmas attached to their disability.
compensate for their exceptionality. There were also individuals who shift away from their
identities. Moreso, having a disability paired up with a bias in aspects such as SES, race, and
gender, brings forth Complex Identities. Those who find similarities in other people fall under
Common Identities.
Gibson's (2005) model presents the development of disability identity through different
stages. The model illustrates the early childhood years as a stage of Passive Awareness,
adolescence as a stage of Realization, and adulthood as the age of Acceptance. Although the
timeline assigns a stage of development at a certain age, it has been pointed out that individuals
can go from one stage to another. If a person with disability develops loathing or anger towards
his or her condition leading to a phenomena such as identity crisis, one may move from being at
the stage of acceptance, reacting to it through going back to the realization stage (Gibson, 2006).
Other than disability identity development, it is important to also consider the typical
identity formation process. Grotevant’s (1987) Process Model of Identity Formation is a model
that describes an individual’s identity formation as developmental, contextual, and lifelong. The
Exploration Process that leads to Affective Outcomes and Cognitive Outcomes, Identity
Consolidation, and Identity Evaluation. Once an individual reaches the phase of evaluation, one
would go back to orientation, hence repeating the whole process (Grotevant, 1987). Similar to
An interesting trend among the given models is the apparent need to go through anger or
denial at some point of their lives. Present models impose that grieving over one’s disability is a
9
Positive Disability Identity Development
given (as mentioned in Bogart, 2004). The observable patterns build up on the idea that the
providing mentorship and sharing about one’s disability and giving ways on how to cope and
accept one’s condition. Shakespeare (1996) has specifically pointed out that none of the present
narratives are “psychologically or socially healthy or progressive”, further adding that “they all
involve an element of denial or failure to come to terms: they all involve a significant element of
identities has been challenged by a number of factors. One factor is the personal perception of
individuals with disabilities. Given the medical perspective, they are “socialized” to perceive
this idea, stating that forming a positive disability identity is hindered by the default isolation of
individuals with disabilities in their communities. Another factor that challenges the
development of positive disability identity is their isolation and separation from outlets of
Swain and French (2000) argues that there is a need to create a model that veers away
from the present research. Coining it as the affirmative model, it has been suggested that
disability would not be perceived as tragic, to further develop positive identities (Swain and
French, 2000). There are models that were formed from the focus on grief, turning a blind eye
towards personal perceptions of disabilities (Forber-Pratt, et. al., 2017). The development of a
positive disability identity is a process (Shakespeare, 1996) and the current circumstances posit a
need to review and re-assess the current identity formation processes present at the emergence of
Down Syndrome
Today, there are approximately one billion people who have a form of disability (World
Health Organization, 2012), from which,1 in every 700 has Down Syndrome. In the Philippines
alone, there are 1 in 800 infants born with Down Syndrome, making up 1,875 cases of the
condition (Alcantara and Castronuevo, 2016). Down Syndrome is currently the most common
chromosomal disorder. Studies focusing on the causes of Down Syndrome suggest that a
mother’s age is directly correlational to the risk of possibility of a child to be born with Down
Syndrome (National Society of Genetic Counselors, n.d.). The life expectancy of individuals
with Down Syndrome has greatly increased. From having an initial life expectancy of only ten
years during the 1960’s, individuals with Down Syndrome have lived until an average of 47 in
2007 (Center for Disease Control and Prevention, 2017), and up to as old as 60 since medical
practices against Down Syndrome individuals have been eliminated (National Society of Genetic
Counselors, n.d.; Global Down Syndrome Foundation, 2018). A notable attribute of individuals
with Down Syndrome is their positive disposition. In a study involving individuals with Down
Syndrome who are 12 years of age and up, it has been revealed that although not a solid 100% of
the population of individuals with Down Syndrome are generally happy or contented with life, a
good majority have exhibited positive dispositions towards their perspective about themselves
This common perception of individuals with Down Syndrome as “happy people” could
be seen as an opportunity to review the need to create more affirmative models (Swain and
French, 2000) of disability identity formation. Since the emergence of early intervention in the
1960’s, the progression of identifying and recognizing one’s condition had a gradual and
11
Positive Disability Identity Development
significant effect on self-perception and identity (Shonkoff and Meisels, n.d.). Being able to
recognize one’s disability would pave the way for acceptance and positive self-perception.
Synthesis
The presented literature has established the context of the lack of frameworks or models
has been observed that the common denoument of the processes of disabilitiy identity formation
revolves around generation and wisdom (Gibson, 2006, and Bogart, 2004), implying that the
peak of disability identity formation is acceptance of one’s disability after going through
recognition and self-evaluation. On the other hand, Grotevant (1987) suggests that typical
identity formation is a cycle. The proponent suggests that the height of disability identity
formation is reevaluation, a state wherein an individual looks into what the process of identity
formation has developed; and that one goes back to the first stage, engaging into exploration
(Grotevant, 1987).
Placing the current prominent models of disability identity formation vis-á-vis typical
identity formation processes raise the need to look into other possibilities in disability identity
development. In an era of recognition, support, and early intervention, there is a possibility that
individuals with disabilities may go through a shift in identity development. Adults with Down
Syndrome would pave the way to create firm foundations of posibility disability identity
formation research as their population are known to be naturally jovial and accepting of their
The current study will be looking into the positive disability identity formation in adults
with disabilities, particularly, adults with Down Syndrome. Apart from previous researches, this
12
Positive Disability Identity Development
study focuses on the development of disability identity considering the likelihood that an
individual need not to go through a separate stage revolving around anger, frustration, and self-
doubt; perceiving these emotions as a part of a positive progression of formation. Findings from
this research would pave the way for the recognition of the merits of early intervention and
Conceptual Framework
T
Figure 1 Conceptual Framework of Positive Disability Identity Formation
This study’s goal is to come up with an updated model of Positive Disability Identity.
Guided by Gibson’s (2005) Model of Disability Identity Developement, the model depicts stages
throughwhich an individual with disability would more likely go through. Just as the emergence
of early intervention and support has become evident, the ommission of the inclusion of anger as
13
Positive Disability Identity Development
an integral part of disability identity development has been observed. The framework suggests
three stages of disability identity formation, the second stage having two variations.
Awareness takes place in the early years of one’s life. During this stage, a child with
intervention and support. Given the environment that has been established around the child, there
is already a sense of identification as an individual who is part of an able-bodied world. The first
strand of the second stage is Intervention/Support. This strand is for children who have not
encountered any form of early intervention or support but have been made aware that they have
Down Syndrome. During middle childhood up to early adolescence or early adulthood, the
individual is given the external support and intervention that was not provided during their early
years. This may include occupational or physical therapy, speech and language pathology,
health-related sessions, and trainings and classes for individuals with Down Syndrome. It is
expected that upon providing these services and opportunities, their self-perceptions and sense of
belonging are honed into a bigger picture—that despite the demands of Down Syndrome, they
can contribute to an inclusive society. The second strand is Optimization, wherein one’s
recognition of his or her abilities and belongingness in the Down Syndrome community that has
been developed through early intervention and support is modified, honed, and applied. One’s
skills and capabilities are used through engaging in activities such as school work, taking part in
an inclusive work force, and going through daily routines. At this stage, an individual with Down
Syndrome performs tasks allowable by limitations set by their condition and further developing
these abilities to expertise. An individual with Down Syndrome has the opportunity to shape his
of one’s self. Though this stage is optimistic in nature, the normative existence of doubt and
14
Positive Disability Identity Development
social comparison is expected but is not given emphasis. Utilization and proactivity serves as the
goal for positive disability identity formation. At this stage, adults with Down Syndrome make
full use of their developed skills and expertise to take part in society. Down Syndrome has
already grown into a normalized part of their identity, hence, it is not seen as a hindrance to
causes related to their disability. This is reflective of the pattern of wisdom in past studies
Research Problem
The current research aims to look into positive disability identity formation. With the
intention of omitting the common stages of anger, frustration, or disregarding present conditions
from previous models (Gibson, 2005; Murugami, 2009), adults with Down Syndrome have been
chosen to take part in the study. Individuals with Down Syndrome are perceived to be innately
happy (Skotko, 2011), hence, considered as the appropriate participants for the study. The study
What are the stages of the identity formation of individuals with Down Syndrome?
a. What are the factors that contributed to the progression of their identity
CHAPTER 2
Research Design
Guided by Gibson’s (2005) Model of Identity Disability and Swaine and French’s (2000)
Affirmation Model of Disability, the present study will be using a Qualitative Approach. The
15
Positive Disability Identity Development
nature of qualitative research is building up knowledge from data made available through the
study, presenting a coherent image of reality (Kielmann, Cataldo, and Seeley, 2011). The
approach is perceived to be more relevant and holistic, opening the possibilities of the study to
interpretation (Kielmann, Cataldo, and Seeley, 2011, and Crescentini, A. and Mainardi, G.,
2009). Furthermore, given the nature of the research, the use of constant comparison will be
used. Adapted from the grounded theory approach, having constant comparison requires the
identification of pertinent themes that would determine the flow of disability identity formation
Sampling
organizations: Down Syndrome Association of the Philippines, ABLE Store, and UniLab
Foundation. Moreso, snowball sampling or chain-referral sampling will also be utilized to gather
more respondents. This type of sampling would be done thorugh the parents and the heads of the
mentioned organizations. To qualify for the study, the participants are expected to fit the
following criteria:
3. Must have a mental age of at least 13 years old (as of last assessment by his or her
A mental age of 13 is required for the study to ensure that the conversation between the
researcher and the participant would be stable and so that it would be easy for the participants to
Instruments
A set of questions has been prepared to serve as the guide of the researcher in data
gathering (please see Appendix A). Each question has a corresponding follow up question and
prompt that would allow the research to draw out more responses relevant to the research.
Based on Gibson’s Disability Identity Development model, the questions made investigate
through the participants’ experiences from their childhood, their adolescence, leading to their
adulthood.
Procedure
Pre-Interview
Before the interview proper, the participants who have expressed their intentions would
be briefed about the study. This would require the researcher to introduce the topic of the study,
as well as the methodology by which the data gathered from the participants would be analyzed.
However, the desire to create a positive model would not be disclosed to avoid the masking of
responses to be in line with the research objective. Once the participants have decided to agree to
take part in the study, their demographics would be collected, and schedules for interviews
would be assigned. Their preferred medium of communication would also be determined. They
Interview Proper
hold the face-to-face interviews. Interviews will be done one by one, each interview allotted a
maximum of one hour and thirty minutes (1.5 hours) to accommodate multiple interviews in a
17
Positive Disability Identity Development
day. The interview would not be held in a close-door setting. It will be integrated in the usual
daily routine of the interviewees. From this time frame, there is an allotted fifteen minutes for
warm up, to make the participant familiar with the interviewer, and to establish a rapport that
could make the responses more authentic. The interview will start with an affirmation of the
demographics collected from the participant, asking basic questions like “What is your name?”
and “How old are you?”. Once the basic information have been affirmed, the researcher would
then proceed with asking the prepared questions. All the interviews will be audio recorded.
Data Analysis
The desired results of the research are patterned after the stage-by-stage progression of
disability identity formation modeled by Gibson (2005). To come up with a similar coherent set
of results, data gathered from the interview will first be transcribed and is subject to open coding.
Once open coding has been done, progressive focusing would be performed to further condense
the categories to center the study’s results (Hancock, Ockleford, and Windridge, 2009). Simple
thematic analysis would be used to detect broader implications of the themes from the data. Themes that
have emerged would be gathered and defined (University of Auckland). Once the categories have been
finalized, the researcher would be summarizing and interpreting findings to come up with a
coherent model of positive disability identity development. In the event that there would not be
no dominant models from the data, additional participants would be requested to take part of the
study, with a maximum of 20 total participants to saturate the results (Hancock, Ockleford, and
Windridge, 2009).
18
Positive Disability Identity Development
Methodological Limitations
Placing the responses of the participant and the interpretation of the researcher in
juxtapose, there may be a possible risk in the partiality of the intended model (Shai, n.d.). This
impending issue would be addressed through the prepared questions for the interviews. Follow
up queries and prompts are already provided for each main question to minimize the
2014). Though perceived as the appropriate sample size for this type of research, there may be
troubleshooting cases once responses are interpreted. There may be a big margin of variability
that would result to not having a coherent set of chronological stages or categories to come up
with the model. Should this instance occur, more participants would be asked to participate in the
study.
Ethical Considerations
One of the critical elements in qualitative research is ethics. Qualitative researchers are
expected to explore, examine, and describe individuals in their natural milieu (Orb, Eisenhauer,
and Wynaden, 2000). There are three primary issues that arise in qualitative research; researcher-
participant relationship, researcher data interpretation, and the research’s design in itself (Ramos,
1989, as mentioned in Orb, Eisenhauer, and Wynaden, 2000). Apart from the initial issues
brought up by qualitative research, the advent of studies revolving around individuals with
disabilities demands a need for a specialized and inclusive set of guidelines. Qualitative research
that includes individuals with disabilities is crucial in revealing issues that should be given more
attention concerning policies, program evaluations and services, and socio-economic interactions
19
Positive Disability Identity Development
(National Disability Authority). Ethics in disability research posits core values that would serve
The value of dignity refers to the recognition of various interdependent rights and
interests that would pave the way for accommodation and respect among the participants of a
study. Autonomy establishes the appropriate acknowledgment and validation of the participants,
as they can provide independent decisions and responses. Equality in eligibility constitutes the
value for representative and inclusive data, suggesting that materials and instruments to be used
in a study are for everyone. This may also include other factors such as consideration for
necessary breaks during data gathering, accessible locations and venues for interviews, and
accommodation for the individual needs of participants. Guidance for good practice promotes
inclusion in pursuing a study. Participants should be oriented of the goal of the research and
informed of research findings. Given that qualitative research creates a personal dynamic
between the researcher and the participant, there are instances wherein in-depth, semi-structural
interviews may cause heavy emotional reactions for participants. Participants who have ebbed
capabilities to comprehend parts of the research should be allowed support, as suggested by the
In order to address these ethical considerations, a proposal was submitted to the research
adviser. In pursuing the research, participants and/or their guardians would be given a brief
overview of the research to assure that participation in the research is completely voluntary and
is dependent on their intent to take part in the process. They would also be informed that they are
allowed to withdraw their participation from the research at any time. From this, informed
consent would be gathered from the participants. Upon collection of informed consent,
A short briefing would be given to the participants prior to the interview. They would be
given the allotted timeframe for the interview, an introduction to the semi-structured questions
that would be asked, as well as their right to put the interview on hold for short breaks (e.g. need
to go to the rest room, need to take a quick snack, etc.) or for time to collect themselves to be in
response to a certain question. The participants’ past experiences may be sensitive and upsetting,
that is why the researcher would be rephrasing certain questions for specific participants to avoid
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Appendix A
1. How do you describe yourself as a person? Can you give words that describe you?
2. What are the notable events that you have ecperienced that made you describe yourself
that way?