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Disability Identity Development Model: Voices from the ADA-Generation

Authors:
  • National Institute of Disability Independent Living & Rehabilitation Research

Abstract

Background: For persons with disabilities, 2015 was a historic year, marking the 25th anniversary of the Americans with Disability Act (ADA) and the 40th anniversary of the passing of the Individuals with Disabilities Education Act (IDEA). It is important to consider the effects of this fundamental shift towards equal opportunity and participation on persons with disabilities' identity development. In practice, however, there are few empirical studies that have looked at this phenomenon and even fewer models of disability identity development. Objective: We conducted a qualitative study to explore the disability identity development of college students with disabilities. Methods: At two research sites, we conducted individual interviews and observations with 17 college students with varying disabilities, and used in vivo and structural coding analysis to identify and develop themes. Results: The results of this study led to establishing a model of psychosocial identity development for individuals with disabilities. The model highlights four developmental statuses: acceptance, relationship, adoption and engagement. Sharing voices from the participants themselves, we also provide commentary on the possible impacts of this work for healthcare professionals and areas for future research. Conclusions: Our findings suggest that this model of psychosocial disability identity development can help to provide an understanding of the psychological processes that individuals with disabilities go through. The model also has application as a framework for healthcare professionals and psychologists who are working with individuals with disabilities.
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Disability Identity Development Model: Voices from the ADA-Generation
Anjali J. Forber-Pratt, Ph.D.
Assistant Professor
Dept. of Human & Organizational Development
Vanderbilt University
230 Appleton Place
Nashville, TN 37203
Marianne P. Zape, B.A.
Dept. of Human & Organizational Development
Vanderbilt University
230 Appleton Place
Nashville, TN 37203
Final submission version
Forber-Pratt, A.J. & Zape, M.P. (in press). Disability identity development model: Voices from
the ADA-generation, Disability and Health Journal. Advanced Online Publication. doi:
10.1016/j.dhjo.2016.12.013
Notes: Portions of this project have been presented at the American Psychological Association
annual conference in 2014.
Keywords: disability identity; identity development; qualitative; human development; college
students
Disability Identity Development Model: Voices from the ADA-Generation
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Abstract
Background
For persons with disabilities, 2015 was a historic year, marking the 25th anniversary of the
Americans with Disability Act (ADA) and the 40th anniversary of the passing of the Individuals
with Disabilities Education Act (IDEA). It is important to consider the effects of this
fundamental shift towards equal opportunity and participation on persons with disabilities’
identity development. In practice, however, there are few empirical studies that have looked at
this phenomenon and even fewer models of disability identity development.
Objective
We conducted a qualitative study to explore the disability identity development of college
students with disabilities.
Methods
At two research sites, we conducted individual interviews and observations with 17 college
students with varying disabilities, and used in vivo and structural coding analysis to identify and
develop themes.
Results
The results of this study led to establishing a model of psychosocial identity development for
individuals with disabilities. The model highlights four developmental statuses: acceptance,
relationship, adoption and engagement. Sharing voices from the participants themselves, we also
provide commentary on the possible impacts of this work for healthcare professionals and areas
for future research.
Conclusions
Our findings suggest that this model of psychosocial disability identity development can help to
provide an understanding of the psychological processes that individuals with disabilities go
through. The model also has application as a framework for healthcare professionals and
psychologists who are working with individuals with disabilities.
Keywords
disability identity; identity development; qualitative
For persons with disabilities, 2015 was a historic year marking the 40th anniversary of the
Individuals with Disabilities Education Act (IDEA) and the 25th anniversary of the Americans
with Disabilities Act (ADA). These key pieces of legislation helped to create a more inclusive
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culture committed to eliminating discrimination against people with disabilities1. It is plausible
that with these improvements towards inclusion, there may have been a shift in how individuals
with disabilities perceive their identity. Hill and Goldstein1 recently discussed how this landmark
anniversary has altered the definition of disability thereby providing the context for disability
identity to thrive. But what is missing is a deeper psychological understanding of the identity
development of persons with disabilities.
The American Community Survey (ACS) approximated the 2013 prevalence rate of
disability in the US population at 12.7% which included approximately 3.6 million veterans2.
This in itself makes the topic of disability identity development relevant. It is also important
because a healthy intact identity is vital not only for one’s physical health, but also for one’s
psychological health; it contributes to a stronger sense of self and the ability to face ableism by
reaffirming desired goals and personal worth3-6.
However, a PsycINFO search for peer-reviewed, scholarly articles conducted on
September 30, 2016 from 1985-2016, returned only 52 articles that contain the exact phrase:
“disability identity” even when no limiters were used. In contrast, using the same parameters,
there were 2,080 articles that contain: “sexual identity” and 1,275 articles that contain: “racial
identity”. Psychologically dissecting the developmental pathway that individuals go through
upon acquiring a disability or growing up with a disability is in its infancy. Despite considerable
traction and years of legislative backing, the psychological and psychosocial aspects of disability
warrant further exploration. In part, the intention of this study was to contribute to growing this
area of work with the goal of increasing the number of studies directly related to disability
identity development. Because disability occurs across the lifespan, can be visible and/or hidden,
is a cross-cultural phenomenon and is constantly evolving based on diagnostic criteria, it can
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make this type of research difficult to conduct. Additionally, identity research itself,
notwithstanding disability, is complex.
Identity is somewhat of an elusive construct, as it is highly personal and intrinsic. Yet
identity can also be seen as communal and shared because a person is dependent on interactions
with others for identity development to occur. Moreover, it is socially and historically
constructed, encompassing aspects of gender, social class, age, sexual orientation, race and
ethnicity and ability. Erikson’s seminal works focused on how individuals grow through the
lifespan7,8. He developed an eight-stage model of this progression, in which the individual
wrestles with competing issues, emotions, values, or constructs, to eventually emerge with the
associated virtue. Stage five—identity and role confusion—is notable in relation to disability.
Erikson emphasized the need to obtain an optimal balance in order to emerge from this stage
with the virtue of fidelity. In the context of disability, a new diagnosis or realization of one’s
differences may precipitate this role confusion and need for further introspection.
Marcia9 expanded on Erikson’s ideas on identity development but moved away from the
discrete stages Erikson used. Like Helms10, Marcia9,11,12 proposed a model based on statuses and
postulated that one’s sense of identity is determined largely by the choices and commitments one
makes regarding certain personal and social traits. According to Marcia, a well-developed
identity provides the individual with an understanding of their strengths, weaknesses, and
individual uniqueness. A person with a less-developed identity does not have a completed or
well-articulated sense of self. Those who are in a state of ongoing crisis and have not made a
commitment to an identity may not be ready to address these issues, let alone be able to assist
others in achieving commitment to their identity.
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Kelly and Millward13 explored identity development in the health context, specifically the
ways in which illness and changes to one’s body can impact identity and self. In their discussion,
they distinguish between two essential types of identity – one that relates to the self and one that
relates to others. This dual conceptualization of identity as having both an internal and external
component heavily guided this work and the model proposed.
Intuitively, a positive sense of self and a healthy intact identity leads to psychological
health benefits such increased self-confidence9, self-esteem14 and increased protective factors
when facing discrimination13,15-19. This has been studied more extensively in relation to racial
identity. Individuals with a healthy racial identity have been shown to have positive physical
health outcomes such as lower levels of stress, anxiety and suicidal ideation16,20. In the study of
sexual identity development, it has been found that individuals are more likely to experience
negative physical health outcomes when they are forced to conceal their identity21-23, or are not
given the chance to develop it at all; this highlights the delicate nature of the relationship
between identity and health. This body of literature provides the basis for plausible applications
to the understudied area of disability identity development and health.
Within the limited field of disability identity development, the definitions of disability
identity differ. Johnstone’s24 definition focused on the internal component and defines it as a
personal construction, a purposive attempt to make meaning of self in the world. Dunn and
Burcaw25 saw disability identity as referring to the possession of a positive sense of self and
feelings of connection to, or solidarity with, the disability community. A coherent disability
identity is believed to help individuals adapt to disability, including navigating related social
stresses and daily hassles.
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There are few existing models of disability identity development. Gill’s26 stage
conceptualization of disability identity development, while a seminal work in the area, was
theoretical in nature. More applicable, but also theoretical was Gibson’s three-stage model,27
which boiled disability identity development down to passive awareness, realization, and
acceptance. There are two issues with this model. First, by using acceptance as the final stage, it
neglects the possibility that identity development can continue after the point in which one
comes to terms with his or her disability. Second, these three stages encompass a highly
individualistic take on identity formation. From their study on the desire for cures among
activists with disabilities, Hahn and Belt28 concluded that disability identity may be shaped not
only by individual feelings, but also a sense of belonging to a community greater than oneself.
Gibson’s model fell short of addressing this external component. While empirical in nature, the
sample in Hahn and Belt’s28 study included only self-proclaimed disability activists and no
information was provided about the nature or type of disabilities individuals had. Additionally,
the internal component was medically focused on a cure, rather than a more encompassing
perspective of disability identity in alignment with aforementioned definitions of disability
identity from the community.
There is a need for models that include relationships, involvement and community as
important elements in disability identity formation. This gap in the literature contributed to the
justification for this study. Darling and Heckert29 measured two dimensions of disability:
participation and orientation. Orientation included three components: identity (pride vs. shame),
model (social vs. personal) and role (activism vs. passivity). While their model was more holistic
and looked at overall orientations towards disability, their conception of identity was limited to
what happens at the individual level, similar to Gibson’s model. Dunn and Burcaw25 also
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approached disability identity more comprehensively and shifted away from traditional stage
models. They suggested that several statuses related to forming one’s disability identity. These
include: affirmation of disability, communal attachment, self-worth, pride, discrimination and
personal meaning. Their use of statuses instead of stages was taken into consideration in creating
our model. However, their model emerged from a narrative analysis of six existing works, and
did not include original data collection.
We, therefore, sought to better understand disability identity development by exploring
and codifying the experiences of college-aged students with disabilities, who had lived the
majority (if not all) of their lives with disability rights legislation in place. As we saw above, most
research on disability identity development focuses on individualistic orientations with less
attention given to the community contributions to one’s identity development. Although this
intrinsic individualistic information is useful, it only gives a small snapshot of the other
contributing factors such as relationship building and connection to the disability community and
how these social aspects also shape one’s identity development. These unique characteristics
might impact additional factors that would remain unknown by only examining identity as an
individual intrinsic construct. Qualitative research can assist in identifying additional factors that
may also be contributing to disability identity development. Additionally, it is important to ground
models of disability identity development in empirical findings, which this study sought to do by
answering the following research questions:
1. Do individuals recognize a disability identity, and if so, how do they describe it?
2. How do individuals with disabilities describe their disability identity development?
Methods
Participants
In-depth qualitative observations and interviews were conducted with college students
(n=17) with varying disabilities. College students were selected as participants in this study
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because based on their ages, they are a part of the “ADA-generation”, meaning that for the
majority (if not all) of their lives, the ADA has existed. Eligibility criteria included being an
adult who self-identified as having a disability and were either on university disability listservs
due to registering for services or by requesting to be added. Students who heard about the study
from their peers were also eligible so long as they self-identified as having a disability.
Participants were recruited through two university disability services listservs and approved
fliers hung in common areas where persons with disabilities naturally congregated on these
campuses. Of the interviewees, four were female and thirteen were male. The disabilities
represented included: post-traumatic stress disorder, traumatic brain injury, blindness,
amputation, 3rd degree burns, muscle/tissue damage, back injury, spinal cord injury, cerebral
palsy, deafness. Institutional Review Board (IRB) approval was obtained from both universities.
All participants signed active consent forms prior to observations and interviews taking place.
Data collection
We interviewed college students with disabilities and conducted 30 hours of observation
in settings where persons with disabilities naturally congregated on the campuses. The two
settings used for observations were a residence hall designed for students with severe physical
disabilities (at one of the two sites) and a resource building for students with disabilities (at both
sites). Both campuses and broader community offer support for students with disabilities
including: academic support, recreational sport opportunities, social experiences, daily life
settings as well as psychological support. Each interview lasted approximately two hours and
was audio-recorded. Given the disability-status of the lead researcher, interviews were
participatory in nature to allow for a conversational style of discussion around aspects of
identity.
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The researchers recorded field notes during the interviews and throughout data collection
to capture observations from the site. Field notes included both descriptive accounts to capture
the setting and conversations as well as a reflective component whereby the researcher recorded
thoughts, questions and concerns to be referenced during the data analysis process.
Researchers adopted an unstructured observation method to provide insight into
interactions between dyads and groups, illustrate the whole picture, capture context/process and
inform about the influence of the physical environment30. These observations helped to show
how college students with disabilities interacted with each other, as well as how they navigated
and engaged in conversation with someone new with a disability who they encounter.
Collectively, these methods of data collection contributed to the overall content validity.
Data Analysis
Audio-recordings were transcribed verbatim by the researchers. These data were
analyzed in three stages, first using in vivo coding to identify preliminary themes in the
participants’ own words from the first round of data collected with only four participants, and
then repeated when we had more participants across all 17 transcripts from two research sites,
and then using structural coding31 based on the past body of literature related to disability
identity development. The initial in vivo coding from one site with only four participants led to a
working model of psychosocial disability identity development33. However, we wanted to
determine if we were on the right track with the development of this model, so we recruited
more participants and added the second site to have more variability of disabilities, including
warriors. We then completed a second cycle of in vivo coding across all 17 transcripts, and then
for a third cycle of coding, used this preliminary model to guide the structural coding process.
As Saldaña31 points, in vivo coding is especially useful when doing research that seeks to honor
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and prioritize participants’ voices, particularly when participants come from a marginalized or
previously silenced population. We deemed this data analytic approach appropriate given the
lack of empirical research.
Results
Acceptance Status
Regardless of whether a person was born with a disability or it was acquired, individuals
talked about acceptance. One participant, who was born with her disability, stated, “It just is
what it is. I don’t know life any other way. So I never really struggled to accept it because I
didn’t know anything other than this life” (Participant 2). Whereas another shared, “I struggled
to accept that I was now considered disabled. I thought that it made me less of a man”
(Participant 1). Depending on how aware the person is of their surroundings, the nature or type
of disability and/or their age at onset, the individual may also go through traditional stages of
grief. The facets of acceptance may occur at the individual level, as well as on the part of family
members, close friends and supporters of the person with the disability. For example, one
participant shared:
I accepted it almost immediately. To me it was real cut and dry—this accident happened,
I was fortunate to still live, and this wheelchair is how it will be now. It took my family
longer to come around. They were more upset about it all than me. I guess that was what
was frustrating for me, having to be patient and wait for them to realize that I wasn’t
dead. (Participant 7)
From a researcher field note following an observation,
For me [lead researcher], being injured at much younger age, things were different than
some of these guys here. I mean, I guess that makes sense, right? Think about it. . .what
was going to elementary school like? What about sleepovers? And birthday parties? Was
being disabled an issue? Yes. It was. I had to accept my disability at a much younger age
than some of my friends here. It’s not that one is easier than another, the challenges are
just different. (Observation Research Field Note 10)
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Relationship Status
The hallmark of this status is the network one builds by meeting other people with
disabilities, particularly similar disabilities, and forming relationships to learn the ways of the
group. There may be an instant connection that is felt, but for others, it may be something they
warm up to. For example, one participant shared, “I don’t feel comfortable talking to a lot of the
young veterans. I have started to look up some of the guys that were in my unit. Many of them
are struggling with disabilities too. It makes me feel better to know that I am not alone”
(Participant 9). Whereas another described this connection more broadly, “There was a power of
attraction here that largely came simply by coming to this university where there was an
established population of people with disabilities” (Participant 15). When diving in to try and
understand what that power of attraction was all about – was it physical similarities, or an
unconscious thread—one participant described it as, “Little daily frustrations more so than big
major issues that kinda bring us together” (Participant 1). However, it was hard to articulate for
some, for example,
Among the athletes, we spend so much time together, the wheelchair basketball teams the
wheelchair racing teams and then I think . . . I really think there’s something more there
then just friendship that brings everyone together. It is obviously the sport we are doing,
but then I think...I really think there’s something more. Well, with the sport, the training,
traveling the time you spend. . .I don’t know. I just. . .There’s just . . .There’s some sort
of a . . . a bond there among people I think just because you know that they have gone
through similar situations as you have and faced the same challenges. (Participant 2)
There was a sense of comfort around health-related and disability-related issues by
having these connections and relationships with others. For example, during an observation that
occurred over lunch, one participant shared, “I love that we can just talk about this stuff, who
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else can you go up to and just flat out ask about cathing1 or pressure sores on your ass? It’s
great!” (Participant 13)
Additionally, many interviewees quickly pointed out that they “have AB [able-bodied]
friends too!” (Participant 6), and some further explained that they would not want to have only
friends with disabilities, but that they did acknowledge this disability community was central to
who they are, and pivotal at specific times in their lives when they needed to be around people
who understood them for them, and when situations arose when they did not want to explain the
disability-related circumstances or justify their actions when facing discrimination or an access
barrier.
Adoption Status
This status is about adopting core values of disability culture and serves as an
intermediary between simply meeting with other persons with disabilities and engaging with the
community. It is throughout this status when individuals test out these shared values and decide
for themselves how much or how little they what to embrace and integrate into their own
identity.
I don’t think any of us [people with disabilities] today are looking to stage a revolution or
a crusade, we’re not ever going to chain ourselves to the court yard steps like you hear
about back in the day. What those people did before us was very important; it was
because of their work then that we can be like this today. I can fight the battle if it comes
up on my own, I don’t need the power in numbers because most of my environment is
accessible now. (Participant 2)
A central feature of this status is moving beyond meeting other people to actions and
incorporating pieces from this shared culture into one’s own life. For example, one participant
1 Cathing is used to refer to intermittent self-catheterization. Many individuals who are
paraplegias or quadriplegias do not have bladder control and therefore rely on catheterization to
use the bathroom.
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shared, “I wasn’t a very good person in a wheelchair when I first got here. I got teased because
of my lack of life skills but I’m better now! Disability related, I can jump a curb now, I learned
how to get gas in my car, you know things like that” (Participant 3). Another participant shared
during an observation,
Before coming here, if it was bad weather I would have just stayed home. I remember
my first week of school here it was raining one night and XXX asked if I wanted to go
get a pizza, and I said, “Dude, it’s raining.” And he said, “Whatchya gonna do, melt?
Let’s go.” He handed me a plastic bag to cover my control switch here, and off we went!
(Participant 8)
Another nuance of the adoption status is learning when and how to be strategic in being an
advocate for oneself and/or for the disability community versus being seen as a threat. This
balancing act was described by many participants, but one salient example is,
You have to be careful...I used to highlight one of my biggest accomplishments as being
the pioneer Deaf student from my University to study abroad, but now I will save it for
when the time is right. People get threatened by pioneers and might not give me the same
opportunities if they feel threatened. (Participant 4)
A metaphor for this stage is trying things on for size: deciding what to internalize versus what
not to, and determining the times and scenarios where this may change. Part of this status is also
becoming more knowledgeable about related laws, policies and “unwritten rules” of being a
person with a disability.
Engagement Status
Engagement status is becoming a role model who helps those who are still learning the
ways of the group and in turn giving back to the community. This status is truly about identity
synthesis, embracing one’s disability and being immersed within disability culture. One
participant shared, “I have started to be a mentor for other wounded warriors. I like knowing
that I might be able to help them. Even if it means just sharing information that I have learned”
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(Participant 16). Another participant elaborated, “I like telling my story, and I think things like
this [participating in an interview] are fun…we have to do this kind of stuff, ya know? It’s how
people learn and how the younger generation with disabilities will grow up to be independent
like us too” (Participant 6). It is important to note that there are multiple ways of “giving back”.
It is not always about being a public speaker or a mentor to others, though that is often what
people think about and share. For example, one participant shared,
I’m in school to become a teacher. I don’t like public speaking in the same way like XXX
does all the time in front of so many people. And, I really could care less about teaching
basketball clinics. Those things are important, but there are other ways to give back too.
When I’m a teacher, just by being in front of the classroom it shows the kids what people
with disabilities can do. And maybe one of my students will have a disability and realize
they could become a teacher too. You never know! (Participant 3)
Broadening this sense of giving back even further, one participant echoed, “Sometimes it’s just
taking the time to have a conversation with someone. I’ve had juniors come up to me and tell me
how they remembered me talking to them several years ago, and I’ll be honest, I don’t remember
it at all, but then you realize how much that made a difference to them” (Participant 10). While
conducting an interview with one of the participants, his phone rang and the conversation went
like this:
Oh so this is fitting, he just called and said... “XXX is currently still in rehab having only
been injured about a month ago. XXX thought his future was set— to go to college to
play football and wrestling on full scholarship. Then, disaster struck and his life as he
once knew it was over. The family is still grieving this loss and struggling with coming to
terms with the disability. Would you [to Participant 5] call this kid up? They’re ready for
it now.” It’s stuff like this that I do every day because it matters. Yeah, it takes up time,
but I remember how important it was for me and my family when I was in that hospital
bed to get that support. But you gotta time it right. Sometimes people aren’t ready for it
yet. (Participant 5)
Through these activities of giving back and becoming more engaged with the community,
identity synthesis is talked about in this status. For example, one participant shared,
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I think that it is a part of my identity. It’s not something that I think about all of the time,
but I do feel that I look at things sometimes from a little bit of a different perspective
than the average able-bodied person because of that. It’s important to associate yourself
with the disabled community for rights and activist purposes and just you know for
yourself for support. [pause] It is a part of my identity, I guess I just never realized it…
it’s just such a part of who I am. (Participant 12)
Through synthesis of these interview transcripts and observation notes, the disability
identity statuses are reflected in the proposed model of psychosocial identity development for
individuals with disabilities below.
[Insert Table 1]
Preliminary development of this model appeared in a book chapter based on the working
model from the four initial participants before it was decided to expand the participant pool and
involve a second university setting32. The researchers had used stages to classify the phases of
development in the early conceptualization of this model. However, after expanding the number
of participants and upon preliminary analyses, there were empirical examples of individuals
resonating with certain phases in different orders. Therefore, in this analysis, developmental
statuses are used as opposed to stages to allow for both progression and regression among
statuses10. This fluidity accounts for the fact that an individual may be in more than one status
simultaneously.
Discussion
These developmental statuses describe a pathway that individuals with disabilities go
through as their disability identity is maturing. Worth noting, these statuses provide a framework
for assessing one’s disability identity development, but it is believed that an individual could
report a strong disability identity development without necessarily resonating with all the
statuses at a given point in time, or even ever. For example, closer to the onset of disability,
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individuals may grapple or resonate with the acceptance status, and yearn to meet others like
them (relationship status) whereas individuals who have lived with a disability for a number or
years may not resonate with these statuses the same way. Similar to other identity groups, on a
given day or point in one’s life, that particular identity may or may not be the most salient. There
may be external factors that cause individuals with disabilities to call their identity into question,
such as a degenerative disability, an additional disability diagnosis, or perhaps forming a deeper
relationship with someone with a disability. These events may cause one to revisit core aspects
of their identity.
Healthcare community members should pay attention to these developmental statuses to
recognize that not every individual with a disability may have come to terms with or accepted
their disability. Additionally, there may be ways that healthcare community members can help to
facilitate the relationship status by setting up events or spaces where individuals with related
disabilities can come together and socialize or participate in an event. Building relationships
might help to provide the network of support and comfort discussed by the participants above.
Healthcare providers can promote these events and encourage individuals who may be reluctant
to try it out. The processes of the adoption status are mostly internal, therefore, healthcare
providers should be aware that individuals with disabilities may still be reconciling how little or
how much they identify with the disability community. Within the engagement status,
individuals with disabilities have ample opportunity to collaborate with members of the
healthcare community to refine and inform best practices, for example. Though more research is
needed with a larger sample, individuals with disabilities who engage with the community may
have increases in self-confidence, agency and self-determination. The participants with exuding
self-confidence may be more actively engaged with their community which could minimize
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future health complications that can arise by being isolated. Future research should be conducted
with more in-depth questions specifically related to healthcare and health needs to explore this,
as this emerged as a theme but was not targeted with the questions asked.
Care was taken to gain perspectives from college students with a variety of disabilities,
though there were certainly subgroups omitted due to the study’s small size. Both sites have
strong and well-established support services for persons with disabilities which contributed to
the variability of the types of disabilities represented, however, only having college-level
individuals with disabilities may have biased these findings. Future research should be
conducted with community members from the same age demographic. The diversity of the
stories—both young men and women, across physical disability groups, who had acquired
disabilities at different points in time helped to frame the proposed statuses. Worth noting,
however, is that there were more men in this sample than women, likely due to the inclusion of
veterans.
Our empirical model of disability identity development is a departure from the
theoretical models proposed by previous authors. Moreover, it explores not only the internal but
also the external dynamics of disability identity formation building on Kelly and Millward’s13
conceptualization of identity. It became apparent that statuses rather than static stages would
better describe this process, as mentioned earlier, as it allows for more fluidity. For example, it
was often the phase of engagement with others and giving back that allowed warriors to begin
processing the other statuses.
The crux of this study highlights the importance of meeting other people with disabilities
and forming relationships to aid in the identity development process. Disability is unique in that
it can and does occur across the lifespan. Additionally, unlike racial identity, where you often
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have individuals who share that race in your nuclear or extended family, in order to interact with
other people with disabilities, you have to first find them. The onus is on the individual to either
seek this out, or to fall into it by accident.
Further research is needed to explore more thoroughly if each of these proposed statuses
are meaningful to disability groups not included in this study – such as individuals with
intellectual disability, autism, learning disabilities, deaf-blindness and so forth. Additionally, we
need large scale longitudinal studies to explore the evolving concept of disability identity
development. Using this model as a guide, developing a way to quantitatively measure disability
identity development would allow for deeper exploration. An accurate measurement tool would
further enhance the cultural competency of professionals in health-related fields and empower
them to better serve the potential needs of individuals with disabilities. We could then design
more effective interventions to support individuals and family members who may find
themselves face-to-face with a new disability. We could also begin to answer important
questions such as assessing group level differences of physical and mental health outcomes
based on one’s conceptualization of disability identity.
Conclusion
As healthcare professionals and psychologists, we have an obligation to better
understand this developmental trajectory. This would enable us to better counsel families when
the outbreak of entrovirus leads to an influx of cases of acute flaccid myelitis or be able to help
individuals who are returning from war and find themselves a member of the disability group.
Our findings suggest that this model of psychosocial disability identity development can help to
provide an understanding of the psychological processes that individuals with disabilities go
through.
DISABILITY IDENTITY DEVELOPMENT
19
Future applications of this model could be used to assess physical health outcome
differences among individuals with disabilities. From the larger body of identity literature, it is
well-documented that individuals with a healthy sense of identity, such as racial identity or
sexual identity, have positive health outcomes, though this work is in its infancy in relation to
individuals with disabilities. This study provides the underlying foundation to be able to study
this further. For example, it is plausible that through the processes of acceptance, building
relationships, adopting the ways of the group and engaging with the community, that there are
secondary benefits to one’s health: having a community of support when facing physical health
complications, such as being able to crowd source when weighing the decision to wait for a
doctor’s appointment or go to the emergency room for a particular symptom. This model is
empirically grounded and has applications as a framework for healthcare professionals, and
psychologists working with individuals with disabilities to better understand where their client
may be in processing and developing their disability identity.
DISABILITY IDENTITY DEVELOPMENT 20
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... For example, there are examples of individuals resonating with certain phases in different orders. Therefore, thinking of these as statuses instead of stages allows for both progression and regression among statuses (Forber-Pratt & Zape, 2017;Forber-Pratt et al., 2020). It also accounts for the fact that an individual may be in more than one status simultaneously, and even may go through this process multiple times in their lifetime due to the presence of more than one disability. ...
... The DIDS was designed based on the model proposed by (Forber-Pratt & Zape, 2017;Forber-Pratt & Aragon, 2013) and has been led by a disabled researcher along with input from many disabled research lab members over the years. According to this model, with support from both qualitative and quantitative empirical evidence (Forber-Pratt & Zape, 2017;Forber-Pratt et al., 2020). ...
... The DIDS was designed based on the model proposed by (Forber-Pratt & Zape, 2017;Forber-Pratt & Aragon, 2013) and has been led by a disabled researcher along with input from many disabled research lab members over the years. According to this model, with support from both qualitative and quantitative empirical evidence (Forber-Pratt & Zape, 2017;Forber-Pratt et al., 2020). disability identity is considered a unique phenomenon that shapes that way individuals' look at themselves and how they interact with the world. ...
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Purpose/objective: This work provides comprehensive analyses targeting the factor structure and dimensionality of the Disability Identity Development Scale (DIDS). In Forber-Pratt et al., 2020, disability was defined broadly to include individuals with visible or hidden disabilities across many disability groups (i.e., physical, intellectual, learning, or chronic illness). Research method/design: Retained items from previous exploratory factor analysis were administered to a sample of adults with disabilities (n = 1,126) ranging in age from 18-78 years. Confirmatory factor analytics (CFA) including traditional CFA, and bifactor confirmatory analyses were used to examine the dimensionality and structure of the DIDS. Results: Traditional CFA provided lack of evidence in support of the oblique four-factor structure previously reported. Bifactor confirmatory analysis revealed items on the DIDS are consistent with unidimensional, and to a lesser degree multidimensional solutions (i.e., items lacked a level of content diversity to substantiate a complex, reliable multifactor structure). Discussion/conclusion: Analytic results on the DIDS revealed reasonable psychometric properties as a measure of disability identity. Our results support using a sum or total score of disability identity. Results of this work are an important contribution to a growing body of literature supporting, and investigating, disability identity development. Furthermore, the DIDS measure with its resulting composite score of disability identity has the potential to inform clinicians in the field of rehabilitation psychology as well as informing future targeted interventions. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
... The reduction of self-esteem is likely to deepen social isolation, which can cause considerable constraints on social participation. Recent studies on rehabilitation psychology conducted in the United States suggested an approach that emphasizes self-esteem and identity recovery through social participation (Bogart, 2015;Forber-Pratt & Zape, 2017). In the context of the COVID-19 pandemic, the preparation of methods for enhancing the self-esteem of people with physical disabilities and the society's concern for them will be helpful in their voluntary social participation. ...
... It supported the results of previous studies (Oh, 2022;Park & Yang, 2015), which revealed that the social participation of people with acquired physical disabilities significantly affected disability acceptance. Previous studies on the process of accepting disability (Dunn & Burcaw, 2013;Forber-Pratt & Zape, 2017) consistently reported that people with the highest acceptance level actively participated in social activities. The receptive attitude toward disabilities promotes active participation in society (Hahn & Belt, 2013). ...
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Purpose The objective of this study was to understand the effects of self‐efficacy, self‐esteem, and the degree of disability acceptance of people with physical disabilities living in COVID‐19 pandemic on their social participation. Methods Among the 4577 registered disabled people who participated in the 2nd wave of the Panel Survey of Employment for the Disabled (PSED), 1682 people with physical disabilities who faithfully answered all the survey items were selected as the final study subjects. This study used the variables of social participation, self‐efficacy, self‐esteem, and disability acceptance, which were validated by experts’ review and consulting and research at the Korea Employment Agency for Persons with Disability. Pearson's correlation analysis and multiple linear regression analysis were performed to identify variables that could predict the social participation of the study subjects. Results The self‐efficacy, self‐esteem, and the degree of disability acceptance of people with physical disabilities were positively correlated with social participation. The results of this study showed that self‐efficacy, self‐esteem, the degree of disability acceptance, economic activity, and education level explained 22.4% of social participation. Conclusions It was found that self‐efficacy, self‐esteem, and the degree of disability acceptance of people with physical disabilities were important variables affecting social participation. These psychoemotional variables shall be considered for intervention approaches to improve the social participation of people with physical disabilities in the future.
... Though American relations with disability are beyond the scope of this article, ableism is incredibly prevalent in academia. The post-ADA disability rights movement has created an increased need for understanding disability identity formation [15], especially with frameworks which reject current or out-dated models [14]. Many studies have been performed examining the ways students develop their physics identity with respect to their social identity [10][11] [16][17] [18] evidencing the effectiveness and importance of this research. ...
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Although social identity, as it relates to physics identity, is not a new area of research, disability identity is woefully understudied in physics. Disability is political, and ableism is real, ordinary, and pervasive in physics.Disabled people find themselves as the subject of sociopolitical violence both in and out of the classroom,simply for existing in their body. In a climate charged with politicality and identity discourse in the classroom,it is surprising that a framework for understanding disability and the transactional relationship disabled persons have with their environment in a political way has yet to be used in physics education. In this paper, I introduce Political Disability Identity[1] as a framework for studying disability identity in Physics Education Research. I outline the domains of Political Disability Identity, and the underlying themes which should guide research using this framework. Finally, I call for its use both in the physics classroom, and in Physics Education Research.
... The concepts and subconcepts that compose the theoretical framework all share a relation to identity, meaning the internal and external factors that play a role in a person's membership to a specific social category and/or a distinguishing feature someone takes special pride in [21,22]. The concepts chosen were seen as complimenting and magnifying identity because the data from the interviews and observations point to ways in which participants construct and perform their identities. ...
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In this qualitative study, young adults with visual impairments aged 18–27 and family members were studied to determine the effects of state-mandated high school driver’s education on independent travel, self-efficacy, and the transition to adulthood. A young person’s ability to travel independently can determine whether he or she transitions successfully from one life stage to another. Concepts from different social theorists are used to form the theoretical frame for data analysis. The author finds that in spite of curricular and pedagogical intervention, regardless of technological advances, and despite low-vision/blind youth’s accomplishments and determination to succeed, young people with low vision/blindness nevertheless continue to be challenged in the realms of the transition to adulthood, securing employment, and independent living due to persistent, societal-level discrimination and perceived incapability. These persistent, unwarranted forms of discrimination profoundly affect young adults’ perceptions of self-efficacy and more often than not close doors to their success. The author posits that societal-level intervention is required to effect meaningful, equitable change designed to dismantle the current systemic discrimination plaguing youth and young adults with visual impairments.
... Deaf role models can help other deaf individuals to navigate through these psychological, societal, and physical barriers in the hearing world (Cawthon et al., 2016). The deaf community also helps to develop the deaf identity-social identity (Dirth & Branscombe, 2018) and/or disability identity (Forber-Pratt & Zape, 2017), which is significant for one's psychological well-being (Chapman & Dammeyer, 2017). As a whole, the role of the deaf community is not only a support for families in the early interventions of the deaf child (Benedict et al., 2015), rather it can provide social support throughout life's journey and help to maintain well-being. ...
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The sense of belonging plays an important role in a person's well-being. It also acts as a protective factor against mental distress. Deaf people struggle to fit into the dominant hearing society due to communication barriers. The multi-languages used in Malaysian families add to this communication challenge. Communication breakdown leaves the deaf person socially excluded while a poor sense of belonging also increases their vulnerability to mental health issues. Hence, this study explored the deaf person's sense of belonging and well-being through their social experiences in Malaysia. Baumeister's need-to-belong theory served as the theoretical framework of this study. An Ethnographic approach with in-depth interviews and participant observation was used to explore the social experiences of six Chinese deaf adults, aged 20-37, residing in Ipoh. Their hearing parents were interviewed as well to obtain parents' perspective of the child's well-being in the earlier years. Participants were selected using the purposive and snowballing sampling method. Upon data saturation, thematic analysis was used to identify themes, patterns, and interpret its meanings. The main themes that emerged from the data was the "struggle to fit in", "emotional effect", and "quality social connections". Findings of this study can be used in the formation of policies and strategies to ensure that deaf individuals are not excluded from their communities. Cultivating an inclusive community and developing the deaf community offers a better sense of belonging, which would help increase well-being of deaf people. Future research may focus on deaf identity and well-being of deaf youth in Malaysia.
... Qualitative methods from the humanities are valuable in attaining a first-hand perspective of the disability experience that can be informative for practice (e.g. Alshammari, 2019;Forber-Pratt and Zape, 2017;Leo and Goodwin, 2016;Schiariti et al., 2014). Qualitative work suggests that individuals with disability are often subject to ableist norms that emphasize the individual as the source of disability and conceal the cultural, societal, and environmental sources, which is consistent with the mechanistic perspective. ...
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Physiotherapists seek to improve client movement and promote function within an individual’s unique environmental and social realities. Despite this intention, there is a well-noted knowledge-practice gap, that is, therapists generally lack sufficient foundational preparation to effectively navigate societal challenges impacting contemporary healthcare. As one step toward addressing the issue, we propose an educational solution targeting current and future physiotherapy faculty, whose responsibilities for entry-level course development and curriculum design substantially impact student readiness for clinical practice. We propose that physiotherapy faculty trained via postprofessional education in a non-biomedical field (e.g. psychology, education, and philosophy) will be uniquely prepared to provide students with tools for dealing with complex social issues facing their clients; critical analysis skills; statistical and technological training; and a deeper theoretical and philosophical understanding of practice. Taken together, such interdisciplinary tools could help address the knowledge-practice gap for physiotherapists and promote the ongoing evolution of the profession in concert with contemporary healthcare. Physiotherapists who pursue interdisciplinary studies may more deeply understand the challenges faced by clinicians and may be well-positioned to leverage knowledge and methods in another scientific discipline to expand and transform the scope of solutions to these challenges.
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BACKGROUND: Disability stigma is a significant risk factor that reduces job satisfaction. Based on the previous studies, the role of disability acceptance as a buffer to prevent the negative impact of stigma in the workplace is hypothesized. OBJECTIVE: This study examined the moderating effect of disability acceptance on the negative effects of disability stigma on job satisfaction of people with disabilities. METHODS: 164 participants working at the time of the survey completed questionnaires measuring disability stigma, disability acceptance, and job satisfaction. The associations among the three variables were examined using simple linear regression analyses. Hierarchical linear regression analysis was conducted to identify the moderating effect of disability acceptance after controlling disability type. RESULTS: Disability stigma (β=–0.17, p < 0.05) and disability acceptance (β=0.18, p < 0.05) were significantly associated with job satisfaction respectively. In the final model, disability acceptance moderated the relationship between disability stigma and job satisfaction (β=–0.16, p < 0.05). Specifically, the impacts of disability stigma on job satisfaction for participants with higher disability acceptance differed from those with lower acceptance. CONCLUSION: The current research suggests that disability acceptance plays a critical role for people with disabilities to cope with the negative impact of disability stigma. This result implies that disability acceptance should be an important focus of intervention to increase job satisfaction.
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מטרת הפרק הנוכחי להציג את המושגים הגדרה עצמית וזהות מוגבלות של אנשים עם מוגבלות שכלית התפתחותית (מש״ה) ולדון בקשר ביניהם ובין תהליכי סנגור עצמי וקבוצתי. תהליך הסנגור של אנשים עם מוגבלות מתחיל בדרך כלל בשלב אישי של הגדרה עצמית. מירב הסיוע לאדם, מצוי במעבר בין תהליך גיבוש הזהות (מי אני?) לפעולה האקטיבית של הסנגור - המוגבלות היא חלק ממני, ואני מסוגל לטעון לטובת עצמי ואף לטובת כלל הקבוצה החברתית אליה אני שייך. עם זאת, תהליכי גיבוש הזהות והסנגור של אנשים עם מש״ה עשויים להיות מורכבים יותר בהשוואה למוגבלויות אחרות, בשני רבדים. הרובד הראשון, קשור לעובדה שהמוגבלות עמה מתמודד האדם הינה שכלית ומשפיעה הן על יכולתו להבין ולבטא את דעתו, והן על יכולתו של הצוות המקצועי להבין את תהליכי החשיבה שלו, לסמוך עליו בתהליכים אלו, ולתווך עבורו את התהליכים הסנגוריים עצמם. הרובד השני קשור להיעדרו של שיח מקדים בנושא זהות מוגבלות (Disability Identity) בקרב אנשים עם מש״ה ובפרט שיח חיובי על זהות זו. שיח זה כמעט ואינו מתקיים במעגלי החיים של אנשים עם מש״ה בשל הסטיגמה הרווחת בחברה (בה יש להכליל גם אנשי מקצוע) הרואה בהם חסרי דעת, מסוגלות או יכולת, כאלו שיש לקבל החלטות עבורם ולעשות בשבילם ובמקומם. סטיגמה זו מופנמת פעמים רבות גם במחשבותיהם של האנשים עצמם, ובכך משליכה גם על ביטחונם העצמי, אמונתם בעצמם ויכולתם לסנגר על עצמם. בהמשך מציג הפרק, תוך שימוש בתיאורי מקרה, את האופן בו תהליכי סנגור עצמי וקבוצתי מחוללים שינוי תפיסתי בקרב אנשים עם מש״ה ושינוי תרבותי בקרב החברה כולה. הפרק מסתיים בפנייה אישית לאנשי ונשות המקצוע הקוראת להם לתת משקל וחשיבות להיבטים סנגוריים בחייהם של אנשים עם מוגבלות שכלית, תהליכים המאפשרים לכל אדם עם מוגבלות שכלית להשמיע את קולו, את צרכיו, את חלומותיו ורצונותיו ולהרגיש שרואים ומכבדים אותו.
Chapter
This chapter discusses issues related to the social exclusion of the physically disabled, meaning of social exclusion in their case and reasons why the disabled continue to remain at the periphery of public policy and social action. It examines the nature of societal response towards its disabled members and suggests ways in which persons with disability can be socially included. It also discusses attributes of physical disability which tend to craft disabling identities that generally lead to negative evaluation of the disabled and the stigma that results from it. The notion of ‘emancipatory research’ on disability which necessitates participation of disabled people is discussed as an alternative to positivistic research. An attempt is made to suggest some guide posts in the formulation of social policies that are informed by psychological research in creating conditions for the social inclusion of the disabled.KeywordsPhysical disabilitySocial policySocial inclusionEmancipatory researchStigma
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This Viewpoint describes how the Americans with Disabilities Act has shifted the definition of disability, taking a broad approach to the protection and integration of persons with disabilities in US society. The Americans with Disabilities Act (ADA) celebrates its 25th anniversary this year. The civil rights approach to disability incorporated in the ADA challenges the all too prevalent views of US society that people with disabilities are to be the objects of pity, charity, and medical intervention. It also challenges the common view of what constitutes a disability.