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RUNNING HEAD: DISABILITY IDENTITY AND ALLYSHIP

Disability Identity and Allyship in Rehabilitation Psychology:

Sit, Stand, Sign, and Show Up

Final Submission Version

Forber-Pratt. A. J., Mueller, C.O., & Andrews. E. E., (in press). Disability identity and allyship in
rehabilitation psychology. Rehabilitation Psychology. doi: 10.1037/rep0000256

© 2018, American Psychological Association. This paper is not the copy of record
and may not exactly replicate the final, authoritative version of the article. Please
do not copy or cite without authors' permission. The final article will be available,
upon publication, via its DOI: 10.1037/rep0000256
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Abstract

Purpose/Objective: The purpose of this conceptual paper is to put forth a call for

rehabilitation psychology providers to consider their role in developing disability identity in

their clients, and to understand this action as a form of allyship towards the disability

community.

Method: This conceptual paper is organized to engage existing disability and disability

identity literature and its clinical implications. Practical tools and skills are offered for

providers to develop disability identity and engage in disability allyship.

Results: An overview of disability identity and its relationship to clinical practice is

presented based on a literature review. Conversation starters and two activities are presented

for providers to develop and engage with clients about their disability identity. Descriptions

of allyship actions for providers are presented.

Discussion/Conclusions:This conceptual paper frames disability in terms of both the medical

and social model and argues that thinking about disability identity requires attention to the

social model of disability. This attention is important, because it allows providers to think

about themselves as allies to a particular community, rather than experts who must only “fix”

clients’ disabilities in order to elicit positive identity development. This shift towards

allyship requires attention, engagement, and openness to see clients simultaneously as

individuals and as members of a powerful, diverse community with a unique identity

experience.

Keywords: disability identity, allyship, clinical strategies, social justice, ableism


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Impact:

● This article provides a clinical context for addressing disability identity in rehabilitation

and psychology.

● Providers should be able to differentiate between adjustment to disability and the process

of disability identity development and are encouraged to elicit discussions about disability

identity with clients.

● Disability allyship involves critical self-reflection, attitude adjustment and social action.
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Introduction

Disability identity is a “sense of self that includes one’s disability and feelings of

connection to, or solidarity with, the disability community” (Dunn & Burcaw, 2013, p. 148).

As three disabled women in academia, the authors experience these complex ideas about

identity as salient in our own everyday lives and careers. The purpose of this conceptual

paper is to argue for rehabilitation psychology providers to consider their role in developing

disability identity in their clients, and to understand this role as a form of allyship towards the

disability community.

Disability scholarship has been shaped by multiple philosophical approaches that have

an impact on clinical practice and treatment (defined broadly) involving disabled people.

Two important approaches are the medical model and the social model of disability. The

traditional empirical focus in rehabilitation has been on individual adaptation and functional

adjustment, which stems from the medical model (Andrews, 2016). Providers and researchers

alike study the degree to which an individual copes and functions following acquired

disability. The goals of the medical rehabilitation model of disability are to minimize the

impact that disability has on the person’s life; in other words, to prevent disability from

interfering with daily activities and role participation. Because the medical model is

overwhelmingly the lens through which disability is seen in the world, the majority of

existing scholarly inquiry about diverse identities exclude disability, relegating it to a

separate, personal medical experience. Rehabilitation psychology, like other fields that are

primarily responsible for the medical treatment and therapeutic support of disabled people,

has also focused heavily on adjustment or adaptation to disability, which is a related but

distinct concept from disability identity.

Disability identity is rooted in the social model of disability, and its descendant the

diversity model of disability (Andrews, 2016; Gill, 1997; Linton, 1998). The social model of
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disability focuses on the ways in which environmental barriers create disablement and

disability. It emphasizes the ways that particular contexts, societal structures (including

macro-level structures like capitalism), and inaccessible environments are the source of the

problem and simultaneously addresses the ways that disabled people continue to be

marginalized (Barnes & Mercer, 2004; Charmaz, 1995). The diversity model of disability

(Andrews, in press; Mackelprang & Salsgiver, 2016) also recognizes the inaccessible and

often oppressive environments that surround people with impairments. It differs from the

social model in that it situates disability as a unique cultural group as a result of the

experience of impairment, regardless of the individual’s environment. This perspective

complicates the social model in that it recognizes the unique human variations that disabled

people hold both in their bodies and, subsequently, as part of their identities. The diversity

model celebrates the experience of disability as a cultural phenomenon, with particular

cultural outputs – unique contributions made because of, rather than in spite of, the position

and identity of disabled people. In this way, disability is not viewed from a deficit-based

perspective: rather, it is viewed as an aspect of uniqueness that contributes to society’s

overall richness (Connor & Gabel, 2009; Connor, 2012; Erevelles, 1996).

Disability Identity Development

Disability identity, then, can be seen from a social/diversity model perspective as

both a personal and a collective concept; it involves the extent to which one feels shame or

takes pride in disability, the degree to which one has integrated disability into one’s sense of

self, and the type of contact, camaraderie and engagement one has with the larger disability

community (Caldwell, 2011; Darling & Heckert, 2010). Importantly, the disability

community itself is not a homogenous group; understanding it in this way can perpetuate

harmful ideas about individual disability experiences and identity. The disability community

is group of people who experience impairment and societal discrimination on the basis of that
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impairment; the community is large and represents many different intersectional identities

and understandings of things like impairment.

Models of disability identity development. Most theoretical models of disability

identity have developed from the work of Erickson (1968) and largely fall into two types:

identity status models and narrative models. Identity status models typically describe

different statuses, phases or components of identity development, whereas narrative models

emphasize the creation of the disabled person’s story and exploring the way(s) in which

disability is embedded throughout. The most well-developed models are not linear, have no

endpoint, are developmental in scope, and emphasize that disabled people exhibit different

responses in different areas of their lives, in different contexts. Among the first to research

disability identity were Carol Gill (1997; Gill, Kewman & Brannon, 2003), Kathy Charmaz

(1994, 1995), Arthur Frank (1993) and Joy Weeber (2004).

Gill’s disability identity development stages. In Gill (1997)’s groundbreaking work,

“Four types of integration in disability identity development”, a stage theory is used

indicating that individuals move from one stage of identity development to the next. The

stages in this model include: coming to feel we belong, coming home, coming together and

coming out. Charmaz (1994, 1995) focuses on people with acquired chronic illnesses and

identified four major “processes” in the identity dilemmas of chronically ill men: awakening

to death after a life-threatening crisis; accommodating to uncertainty as men realize that the

crisis has lasting consequences; defining illness and disability’ and preserving self to

maintain a sense of coherence while experiencing loss and change.

Frank’s rhetoric of self-change. Frank (1993) describes using “illness narratives” that

are constructed or represented by both the person with the disability, but also the people

around them: family, medical professionals, and other providers. These illness narratives or

fall under three “storylines”: restitution, chaos, and quest. These narratives help us
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understand the different ways that illness is understood by the person, including its relation to

the person’s life. These narratives are important because they are co-constructed by both the

individual and the people who are in their lives, but they have a significant impact on an

individual person’s identity construction.

Weeber’s positional model. Weeber’s (2004) positional model is a stage-based

framework with six positions based on qualitative research with leaders in the disability

community describing disability identity. The first position in Weeber’s (2004) model is

essentially rejection of disability, followed by the second position in which the disabled

person gains awareness of social inequities toward people with disabilities. In Weeber’s

(2004) third position, the person begins to forge alliance with others with similar disabilities,

and by the fourth position, a disabled persons expands allegiance to the broader disability

community. In the fifth position, the disabled person elects not to “pass” as nondisabled even

when possible. In this position, Weeber (2004) postulates that self-confidence and sense of

belonging increases, and that by the final position, the individual begins to support and advice

newer and more junior members of the disability community.

These earlier perspectives on disability identity reveal not only the shifting nature of

identity work itself, but also the need for multiple perspectives on disability identity. Rather

than simply document different identity experiences, it is important to establish professional

and practical tools that might have an impact on those experiences directly. Importantly, this

work is not new: Gill, Kewman and Brannon (2003) challenged the field of psychology to

reframe both its general ways of seeing disability, as well as the roles that psychologists of all

types play in developing disability identity and resolving what they termed “disability

problems” (p. 306). Recent models of disability identity development seem to incorporate

this.
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Caldwell’s Disability Identity Themes. Caldwell (2011) also qualitatively studied

disability identity formation among disability leaders, but rather than a linear model, he

developed a set of themes that were common links among participants. The first of Calwell’s

(2011) themes is initial resistance to disability associated with shame, which over time

evolves into questioning of societal devaluation of disability and finding worth as a person.

Caldwell’s (2011) next theme is connection with disability community and development of a

collective sense of identity. A third theme, according to Caldwell (2011), is an individual

shift toward embracing disability and externalizing oppressive thoughts and feelings that

were once internalized. Next, Caldwell (2011) identified a theme of self-examination and

identification of one’s own biases, toward others with disabilities and broader social identity

statuses. Caldwell’s (2011) final theme is accepting interdependency and bonding with the

greater cause for social justice among multiple marginalized communities.

Forber-Pratt and Zape’s Model of Social & Psychosocial Disability Identity

Development. In Forber-Pratt and Zape’s model (2017), four developmental statuses are

presented: acceptance, relationship, adoption and engagement. Acceptance relates to the

disabled individual and those close to them acknowledging and embracing the disability.

The relationship status is about the disabled person constructing a network by meeting other

people with disabilities, particularly similar disabilities, and forming relationships to learn the

ways of the group. The adoption status is about adopting core values of disability culture and

serves as an interim between simply meeting with other persons with disabilities and

engaging with the community. The engagement status is about becoming a role model and

helping others who are still learning the ways of the group and giving back to the disabled

community.

Across the research, identity is considered highly personal and intrinsic to the

individual. However, identity is also communal and shared, because people are by nature
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socially interactive and interdependent and participation in shared communities is linked to

group identity development. Thus, identity is both socially, individually, and historically

constructed and encompasses aspects of gender, social class, age, sexual orientation, race and

ethnicity and ability. Distinctions between the individual and the communal, the internal and

the external, are reminiscent of philosophical divisions between ways of conceptualizing

disability: as a problem within an individual’s body or mind that should be investigated and

normalized, or as the product of an interaction between an individual and his or her social and

physical environment (Shakespeare, 2010). As the usage and understanding of these identity

models are becoming more widespread, there is an increasing body of research that explores

these interactions as well as the impact of particular aspects of disability identity on other

psychological outcomes. For example, Bogart (2018) has studied the impact of disability

pride on self-esteem and suggested that clinical interventions focusing on disabled people

should include personal and environmental factors, such as social support, that bolster pride

in disability.

Why is Disability Identity Important?

Why might disability identity be an important phenomenon for rehabilitation

psychology and practitioners in the field to engage? In one of the seminal discussions of

disability identity and disabled activists, Hahn and Belt (2004) ask their participants a

provocative question: if a magic pill existed that could cure their disability, would they want

to take it? While a medical model perspective on disability would consider this question to

have a foregone conclusion, participants answered in a way that should inform rehabilitation

psychology in general and the providers who work in the field in particular. Participants who

had “stronger positive affirmation of personal identity as being disabled are more likely to

reject a cure because curing their disability takes away their source of self-affirmation” (Hahn

& Belt, 2004, p. 460). What does this finding tell us about disability identity in the context of
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rehabilitation psychology? Individuals who have a strong disability identity, or “sense of self

that includes one’s disability and feelings of connection to, or solidarity with, the disability

community” (Dunn & Burcaw, 2013, p. 148), may be more equipped to cope with the

structural challenges of their disability and, thus, experience better health outcomes than

those who reject their disability. Thus, it is important for health care providers who work with

individuals with disabilities (e.g., physicians, nurses, physical therapists, counsellors, medical

social workers, etc.) to be able to assess the disability identities of the patients they serve.

Gill, Kewman and Brannon (2003) note that, discipline wide, “the idea that life with a

disability can be a distinct cultural experience or the basis of a positive minority identity is

rarely represented in psychology training” (p. 309). Social identity, as suggested by Gill,

Kewman and Brannon (2003), consists of both the knowledge that one belongs to a social

group and the significance that one ascribes to their membership in that group (Tajfel, 1972).

Social identities have important health implications, as they “can be associated with positive

or negative health outcomes” and can explain and influence “the way in which individuals

understand and respond to the social structural conditions in which they find themselves”

(Haslam, Jetten, Postmes, & Haslam, 2009, p. 6). This is particularly important for members

of marginalized minority groups, such as individuals with disabilities. More generally,

researchers, educators, and psychologists, have an obligation to better understand this

developmental trajectory for both adults and youth. An understanding of disability identity

development would enable professionals to more effectively interface with individuals with

disabilities and their families. This is especially important given significant medical advances

which has resulted in infants born with various birth anomalies having longer, healthier and

more interdependent and independent lives; the field is challenged to support these

individuals to grow and flourish as citizens (Murray & Lopez, 1997).


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While there are several important practical reasons that rehabilitation psychologists

should engage disability identity in their work, there is also an important body of emerging

literature that supports a theoretical discussion and framing of disability identity from a wide

variety of perspectives. These theories often focus on different aspects of disability identity to

make their claims, and represent many different approaches to thinking about the construct of

identity itself: as often a non-linear, complicated, and messy. Broadly, though, a coherent

disability identity is believed to help individuals with disabilities navigate related social

stressors and daily hassles (Forber-Pratt & Zape, 2017). Disability identity has also been

explored in relation to mental health outcomes (Bogart, 2015); attitudes towards cure (Hahn

& Belt, 2004); and even political activism (Putnam, 2005; Schur, 1998). Hahn and Belt’s

(2004) work operates under, and challenges, the assumption that disabled people desire

improvements in their functional abilities or even cures. The model also explores how

disability relates to individual senses of identity, positive disability identity, and belonging in

the disability community. The findings of this model suggest that for those who have a strong

disability identity, “curing” their impairment is neither a goal or a focus of everyday life;

instead, people with strong disability identities focus on removing societal, physical, and

systemic barriers that make life with a disability challenging.

Putnam (2005) offers a framework for disability that has the potential to improve

understanding of the role of disability status in identity politics, based on the need for a

common language from which to discuss disability identity and to then guide empirical

analysis. Putnam (2005) outlines six potential construct domains for political disability

identity and their subdomains, including: self-worth, pride, discrimination, common cause,

policy alternatives, and engagement in political action (p. 190). Schur (1998) linked political

participation and disability activism, where participation in political activity, particularly

around disability activism, is discouraged when disabled people are isolated from each other
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and are primarily subject to efforts from others to normalize their impairments. When

disabled people are politicized; that is, when they advocate for disability issues and organize

with other people who have disabilities, they express a greater sense of personal control and

efficacy, and also identify discrimination and stigma more frequently in their environments.

In all of these theoretical frames disability shapes how individuals see themselves,

their bodies, their ways of interacting with and advocating in the world, and how they

function. Disability occurs across the lifespan, can be readily apparent or hidden, and is

constantly evolving along with on diagnostic criteria established by able-bodied practitioners

and researchers. Additionally, disability is cross-cultural in that it is not the only identity

claimed; disabled people are also part of diverse racial, ethnic, gender identity, and sexual

orientation communities. While the ultimate goal should be to develop interventions to help

support individuals to make meaning around their own disability and assist families to

support disabled members, quality scholarship in this domain requires more robust

instrumentation in relation to disability identity development. Disability identity development

is significantly understudied (Forber-Pratt, Lyew, Mueller & Samples, 2017), and lags behind

research and identity development investigation into other aspects of identity (and

intersectional identities), such as racial and sexual orientation identity development. This

interdisciplinary scholarship explores the impact of identity or identities across all aspects of

life – personal, social, academic, and professional. Often missing from the extant research on

identity development, even when the discussion is intersectional, is disability identity.

Because of the lack of attention paid to disability identity, providers may experience

discomfort or overlook the concept in clinical practice. We suggest that the lived experience

of individuals with disabilities, including activist groups’ calls for community and solidarity

(for example, Sins Invalid’s Disability Justice Primer) is reason for providers to not only
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consider disability identity in clinical practice, but to continue to build robust, critical and

thoughtful research around the phenomenon.

Disability Identity in Clinical Settings

It is imperative, however, for the research related to disability identity development be

in harmony with and complement strategies and recommendations for discussions in the

clinical setting. In the research, disability identity development has been studied primarily

through qualitative methods that focus on individual experiences, in part because of a lack of

robust measurement tools (Forber-Pratt, Lyew, Mueller, & Samples, 2017). Both qualitative

and quantitative methods are needed to research this understudied phenomenon. Through a

recent systematic review of the literature, only three general measures of disability identity

(i.e., those that are not specific to a particular impairment) were identified (Forber-Pratt,

Lyew, Mueller, & Samples, 2017). These include: the Disability Identity Scale (Chicago

Center for Disability Research, n.d), the Personal Identity Scale (Hahn & Belt, 2004), and the

Questionnaire on Disability Identity and Opportunity (Darling & Heckert, 2010). It is unclear

whether these tools are used in the clinical setting, but have been used in rehabilitation

psychology research (Bogart, 2014, 2015, 2018) In this way, even if rehabilitation

psychologists were well versed in the conceptual underpinnings and complexities of

disability identity research, they would still lack the practical tools and skills to help develop

these identities in their clients.

Allyship & Identity

Being an ally to the disabled community is a critical component when facilitating

conversations with clients about disability identity. Clinicians hold immense power in

settings that serve people with disabilities, including providing access to services, particular

tools or resources, and overall knowledge about disability. This places the clinician in a

unique role: as both an expert, and a learner. This dynamic becomes even more important
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when considering the significance of identity development, its often intensely personal

components, and the ways that a particular clinician’s awareness and orientation towards

disability identity development can shape their client’s. In order to critically and consciously

enter into this space, and since disability is a component of diversity (Andrews, in press;

Mackelprang, & Salsgiver, 2016), clinicians must explore their own potential biases,

worldviews and meaning-making around and about disability. Previous literature has framed

this exploration as part of building cultural competence through the usage of a multicultural

competency framework, which provide a guide for working with clients:

“Cultural competence is the ability to engage in actions or create conditions that


maximize the optimal development of client and client systems. It is the acquisition
of awareness, knowledge, and skills needed to function effectively in a pluralistic
democratic society (ability to communicate, interact, negotiate, and intervene on
behalf of clients from diverse backgrounds), and on an organizational/societal level,
advocating effectively to develop new theories, practices, policies, and organizational
structures that are more responsive to all groups.” (p. 29, Sue & Sue, 2015).

Therefore, in order to work with clients with disabilities, clinicians must acquire

awareness, knowledge and skills related to disability as they would with any other cultural

community or aspect of identity. The Multicultural Social Justice Counseling Competencies

(MSJCC) were recently updated to provide guiding principles to the broader field of

counseling to address issues of diversity and the role of advocacy and allyship within the

field (Ratts, Singh, Nassar-McMillan, Butler, & McCullough, 2016). The MSJCC argues in

alignment with what diversity leaders Sue and Sue have asserted for some time: that

clinicians should possess awareness, knowledge, and skills in order to engage in action that

support clients from diverse communities (Ratts et al., 2016). This action is demonstration of

allyship.

Hipolito-Delgado (2014) argues that cultural competence alone is the minimum

standard, and that the gold standard is actually that of allyship. To be an ally requires more

than basic awareness, knowledge and skills--rather, allies use their social privilege to support
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and advocate for the marginalized community (Hipolito-Delgado, 2014). This sentiment is

echoed by Melton (2018) who asserts that “multicultural competencies hold psychologists to

a high standard to ally with, advocate for, and, at times, become activists in using

psychological science to improve the condition of individuals, organizations, and society” (p.

83, Melton, 2018). An ally can be defined as “an individual in a sociopolitical demographic

group on the upside of power who actively advocates for individuals or classes of individuals

in a different sociopolitical demographic group on the downside of power” (p. 107, Mio &

Roades, 2003). Psychologists have an inherent ethical obligation to function in the role of an

ally, activist and advocate as part of professional responsibility and identity as a psychologist

(Melton, 2018). Through this demonstration of allyship with disability competency at the

foundation, rehabilitation psychologists are in the prime position to truly advocate for the

clients they serve and promote exploration of their clients’ disability identity with the goal of

improved psychological health and well-being.

Clinical Implications

The field lacks a clear understanding of how disability identity can be utilized in

applied settings such as psychological intervention. It may be tempting clinically to associate

clients with disabilities to a certain stage of identity development, but doing so is not only

premature but could circumscribe the individual into preconceived notions based on theory

rather than the person’s reality. Instead, disability identity concepts can be used more broadly

clinically to enhance clients’ well-being. Stage-based approaches can help providers

understand that it is totally normal for disabled people to have a point in their lives where

they reject disability as part of their identity, and avoid affiliation with other disabled people

and the disability community (Gibson, 2006; Weeber, 2004). It is useful not to pathologize

those experiences. Similarly, feelings of anger and resentment toward societal barriers and

prejudicial attitudes, from a disability identity perspective, may not only be justified and
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expected, but also psychologically adaptive (Caldwell, 2011; Gill, 1997; Putnam, 2005). This

rejection of disability as a part of a person’s identity is, importantly, a result of a culture and

medical context that emphasizes appearing normal as the primary goal, and a historical and

current attitude of healthcare providers that focuses on “fixing” people and implying or

outright naming the things that are wrong with particular bodies and minds. For clinicians,

interrupting this cultural and medical context and acknowledging the harmful ways that the

medical model of disability has shaped many disabled people’s ideas about themselves and

others is an important initial step in bringing in ideas about identity development into clinical

work.

How can practitioners begin to think about development of disability identity over

time in their clients? Developmental statuses allow for both progression and regression

among statuses and may be more appropriate than stages of disability identity development.

This fluidity accounts for the fact that an individual may experience more than one status

simultaneously (Forber-Pratt & Zape, 2017). Competent providers are mindful of this, and

careful not to force clients into a particular mold. Instead, exploring disability identity

development is a client-centered task, by allowing clients to direct the conversation and share

his or her natural progression on the disability journey. Clinicians may feel pulled to

challenge or disrupt harmful messages about disability that clients may be internalizing or

client stances that distance them from disability identity. Rather than attempting to dispel

myths or educate clients about the possibilities and positives of life with a disability, the

clinician can work within their theoretical or therapeutic approach to facilitate the client’s

own exploration of the origin and veracity of ableist beliefs. For example, using a cognitive-

behavioral therapy (CBT) framework, a clinician can help the client identify negative

automatic thoughts and core beliefs related to disability, and teach the client to assess the

accuracy of such cognitions and work on skills to develop more accurate and balanced
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conclusions (Butler, Chapman, Forman, & Beck, 2006; Ehde & Jensen, 2004). Integrating

disability identity work into cognitive restructuring does not require a new set of therapeutic

skills, but rather a keen awareness and ability to identify salient content with which to work.

Narrative theories are useful to providers in considering their clients’ stories.

Narrative identity models are focused on the creating and recreating the disabled person’s

personal story, and the ways in which disability is integrated into the plot (Dunn & Burcaw,

2013). In the case of acquired disability, for example, a disabled person’s story may evolve

from disability as tragedy to one of personal resilience and strength (Ellis-Hill, Payne &

Ward, 2008). This approach lends itself well to psychotherapy, where clients are bringing

together pertinent pieces of their lives to recreate their self-narratives. Providers can

encourage self-reflection and making meaning from disability by inviting clients to discuss or

write about their experiences or conversely, to read the works of others people with the lived

experience of disability (Dunn & Burcaw, 2013). Rather than try to influence a client’s story,

providers well versed in disability identity development are able to notice and reflect back

details about how the client views him or herself in relation to his or her disability, and with

respect to the broader disability community. This awareness can also assist providers in

anticipating whether or not a client is ready to be receptive to a peer support interaction or

disability-focused event opportunity.

Facilitating Conversation about Disability Identity

Disability should be considered as another facet of a client’s identity just as racial

identity, sexual identity, gender identity, or spiritual identity may be explored with a client.

There are practical ways to accomplish this goal that can be utilized by providers in sessions

with clients, which will be explored in depth below. However, an important caveat is that just

because a client has a disability, does not mean that disability identity is a struggle or that the

reason for seeking help has anything at all to do with disability (Artman & Daniels, 2010). A
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common mistake is to assume that a client with a disability wishes to focus primarily on the

disability or its effects (Olkin & Pledger, 2003). Psychologists must assess the presenting

issues and set goals for treatment together with the disabled client. It is important not assume

that just because client has a disability that they are experiencing difficulty with disability,

even if the disability is newly acquired. Our understanding of disability identity is that it is

more expansive and complicated than as solely a clinical goal: while this article focuses

specifically on the relationship between clinical work and disability identity and the ways that

providers can properly address disability identity in clinical settings, there are other contexts

in which disability identity can and should be developed. For example, engaging with

disability community in activism or building relationships and support systems that include

disabled people are all positive ways that individuals can develop their own sense of

disability identity outside of clinical settings. Part of supporting disability identity is to be

responsive to the ways that the individual client would like to develop and participate in that

process.

Initiating a conversation about disability identity in clinical settings can feel awkward,

perhaps even more so if the provider does not identify as disabled. Often, disabled people are

used to discussing disability with providers in medical and functional terms and language.

For these reasons, this shift in conversation might feel simultaneously new, and welcome, for

both parties involved. Having a few starter conversation questions ready may help to

facilitate this dialogue. A provider could start by asking a client the following questions, after

establishing rapport with that client:

· What do you remember being taught (formally or informally) about disability growing up?

· What do you think of when you hear the term “disability identity”?

· If there was a magic pill that would take away your disability, would you take it? Why or

why not?
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· How do your multiple identities (e.g., as a woman of color, a husband, etc.) impact your

work and daily life?

· How do you define your disability identity or your connection to disability?

· How and where do you seek out connections to or with the disability community?

Disability Identity Activities

Some clients may benefit from a tangible activity to guide the conversation. Two

potential activities that practitioners could use with clients are the Disability Identity Circle

(See Figure 1) or the Who Am I? Activity (See Figure 2). These activities were developed by

one of the authors and have been used in both individual and group settings with youth and

adults as well as workshops and professional development seminars. The Disability Identity

Circle involves participants placing an X to demonstrate where their disability “falls” in

relation to themselves. This activity can reveal where individuals place their disability

identity in relation to their core; is it internal, is it on the fringes, is it outside of their

conscious thought?

[Insert Figure 1]

The Who Am I activity includes a series of reflective questions about the individual’s

personal sense of self. It asks participants to quickly list their most relevant identities, and

then reflect on their inclusion of disability and disability identity as part of that list. This

activity supports a discussion of the integration of disability in the individual’s sense of

themselves as a whole, especially in relationship to other intersectional identities that they

may also hold and value.

[Insert Figure 2]

These activities can be used by clinicians in individual or group sessions to facilitate

discussion and exploration. It is important to understand there is no correct or right way to

respond. When working with clients over time, it may be helpful to repeat an activity 6
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months or a year later and then compare with the client what aspects have remained constant

and which have evolved over time. Anecdotally, individuals who have completed the

Disability Identity Circle activity in a small group setting as part of a workshop on disability

identity reported liking the visual representation of their disability identity and this sparked

conversation about how their responses to this may be different on a different day or at

different points in time in their lives.

Demonstrating Allyship: Showing Up

Self-examination is critical for psychologists who want to be allies. Allyship is a

fundamental responsibility for those who work in positions that directly impact disabled

people, given the immense impact their practices and ways of seeing disability can have on

the individual. It is important to understand one’s own biases, which all professionals have

(Olkin, 1999). Regardless of whether the psychologist has a disability or not, it is

recommended that the psychologist answer the aforementioned “conversation starters” for

themselves as a point of critical reflection. While we see allyship as less a set of behaviors

and discussions and more a critical way of being and understanding the world, we also

recognize that this way of being is made up of particular moves and moments that, often, are

learned through practice and guidance. We offer a summary of recommendations to

demonstrate allyship to the disabled community in Figure 3, with some specific

considerations for psychologists and professionals who are non-disabled and for those who

are disabled which are expanded on below.

[Insert Figure 3]

It is recommended that all professionals, disabled and non-disabled, must critically

understand intersectionality. Intersectionality is commonly misunderstood as simply a sum of

multiple identities, when in actuality intersectionality is the interplay of identities and their

relation to power embedded in societal systems of privilege and/or oppression (Crenshaw,


DISABILITY IDENTITY AND ALLYSHIP 21

1989). There are many different kinds of disabilities, impairments and ways of being

represented in the disability community, each with their own nuances and even sub-disability

identity cultures, and there are also important intersectional identities whichare often not

considered in discussions that are already made complex by thinking about disability itself.

Individuals who experience racism, homophobia, transphobia, religious persecution or any

combination thereof in addition to ableism experience a compounded form of oppressionthat

is often not considered in designing tools, practices, and research agendas. The experience

due to this compounded form of oppression is intersectionality. Intersectionality is a helpful

framework for thinking about oppression and identity development because, as Crenshaw

(1991) asserts, “the problem with identity politics is not that it fails to transcend difference, as

some critics charge, but rather the opposite—that it frequently conflates or ignores intra

group differences” (p. 1242).

Furthermore, the intersectional nature of multiple disability identities may be at play

with a client who is a Deaf wheelchair user, or a transgender client who uses a power

wheelchair with depression. While this is a joint responsibility of both able-bodied

researchers and disabled researchers and practitioners, it is especially important for disabled

practitioners to be aware of intersecting identities and be cautious to not promote a singular

disability identity narrative. Given that disability is often stereotyped as a primarily physical

phenomenon, with visible tools that “mark” the person with a disability (i.e., a person in a

wheelchair), disabled practitioners should be especially conscious of the ways that their

conversations about disability might marginalize, silence, or even trivialize other disabilities

or intersectional identities. Additionally, the disability community must understand that

action without inclusivity is not social justice. Social justice is justice for all. All means all.

Non-disabled psychologists and professionals. While many rehabilitation

psychologists and professionals have a personal connection to disability that perhaps


DISABILITY IDENTITY AND ALLYSHIP 22

motivated this career path, some do not. Yet, rehabilitation psychologists, by definition, work

extensively with disabled clients. It is through these interactions and years in the field that

many, anecdotally, report learning more about the disability community by adopting

additional roles and responsibilities as advocates (Gill, Kewman & Brannon, 2003). It is

important to understand, however, that working in rehabilitation settings offers a relatively

limited glimpse of one individual’s stage and experience of a lifetime with disability, and

experiences with clients do not always generalize to the broader disability community.

Instead, non-disabled practitioners should think of their relationships to clients and the

disability community as one of allyship. There are some specific recommendations that

providers can use to demonstrate allyship to the disabled community.

Ask and respect choice of terminology. If you are ever unsure of: acceptable language,

acceptable etiquette, or anything else: It is best to ask. To be unaware and courteous is

understandable, and often invited. Some disabled individuals may prefer identity-first

language, whereas others may prefer person-first language--neither is wrong! Identity-first

language (Dunn & Andrews, 2015) reflects shifts in language-use led by the disability

community who prefer to refer to themselves as disabled, though many professional

organizations and guidelines promote the use of person-first language. It is important to

respect the client’s answer to preferred language use, regardless of the provider’s preferences.

Alternatively, it is appropriate to listen to how the person uses language and follow their lead.

Embrace principles of universal design. The more service providers think proactively

about disability, from a universal design perspective, the less hassles and frustrations disabled

clients will face. While this perspective does not have an immediate impact on identity

development, universal design serves to remove the physical and social barriers that make

disability and impairment challenging in a medical model. Furthermore, “services that

welcome individuals with disabilities as clients, family members, and professional


DISABILITY IDENTITY AND ALLYSHIP 23

consultants are likely to be most highly sought after by consumers” (Gill, Kewan, &

Brannon, 2003, p. 308). Providers should work to be as inclusive as possible from the start,

without disabled persons having to make additional requests upfront. This is especially

important if disabled people are a key demographic served in your practice. Providers should

ask themselves reflective questions like: Does your website include access notes about

accessible parking, path of travel, alternative formats of intake forms? If a person calls your

office, are they able to easily and efficiently receive answers to these questions? If the

elevator is being serviced, were all clients called ahead of time and rescheduled? At a

minimum, is there a sign on the ground floor with a phone number to call and a plan in place

to relocate? Disability should not be an afterthought, and universal design serves to ensure

that clients can access the physical spaces they need quickly, easily, and with minimal

frustration that might cause them to want to distance themselves from a label or a disability

identity.

Act as an ally. As a professional serving the needs of persons with disabilities, what

actions are taken to demonstrate this allyship publicly? For example, what are the ways in

which allyship could be demonstrated if there is a vehicle blocking a ramp or access aisle,

regardless of if there is a person with disability nearby? Or, if there is a disabled person

experiencing discrimination such as becoming aware that a colleague’s private practice is

inaccessible, what might be done to act as an ally? An example of allyship might be asking

questions during event planning on behalf of an organization, such as inquiring whether or

not there will be budget dollars to provide support for a personal care attendant if an invited

speaker requires one to travel. There are also ongoing bias checks What assumptions do you

make about a colleague who takes extra time to write his/her/their notes? A trainee whose

first report drafts are riddled with grammatical errors? These scenarios, which may feel easy

to overlook in the face of larger injustices that affect disabled peoples’ health, are also places
DISABILITY IDENTITY AND ALLYSHIP 24

where using individual privilege and practicing allyship is crucial. Learning to be an ally to

the disability community as a whole also means learning to be an ally to individuals with

disabilities in the moment, where appropriate. Teaching Tolerance (Gaffney, 2016) has

created a list of short “allyship reminders” that can support people who would like to be allies

to many different marginalized people, and these reminders can also support disabled people.

[Insert Figure 4]

Recognize inspiration porn and over-sensationalizing of disabled people. Inspiration

porn is the representation of disability as a desirable but undesired characteristic, usually by

showing impairment as a visually or symbolically distinct biophysical deficit in one person, a

deficit that can and must be overcome through the display of physical prowess (Grue, 2016).

More specifically, inspiration porn can be described as a common tendency in which able-

bodied people condescend disabled people by suggesting they are brave or special just for

everyday activities or existing (Wanshel, 2017). The term is intentionally provocative,

labeled by disabled activists to highlight the objectification of disabled people (Young, 2012).

It is common to find inspiration porn on social media, often through images that elicit pity.

Inspiration porn is present across almost all elements of society, and has “the dual function of

making the non-disabled feel better about themselves while simultaneously holding the

average disabled person to an impossibly high standard” (Serlin, 2015, p. 43). Inspiration

porn is not by, for, or even about disabled people, but rather a tool to make non-disabled

people feel better (Young, 2012). Recognizing and stopping the perpetuation of inspiration

porn is an important characteristic of disability allyship.

Be aware of the current disability rights issues facing the community.Being

knowledgeable and up to date about issues affecting the disability community is essential

towards understanding the identities and current experiences of clients. Awareness of

disability rights issues might include reading blogs or news sites that curate issues related to
DISABILITY IDENTITY AND ALLYSHIP 25

healthcare, accessibility laws, or other broadly framed disability concerns. Psychologists and

allies ought to consider membership in disability rights and advocacy groups such as:

ADAPT, Disability Rights Education & Defense Fund (DREDF), the Association of

University Centers on Disability (AUCD) or the Center for Disability Rights. Additionally,

social media can be a good resource for quick and updated information; following

organizations like Helping Educate to Advance the Rights of the Deaf (HEARD), Rooted in

Rights, Autistic Self Advocacy Network (ASAN), American Association of Persons with

Disabilities (AAPD), National Federation for the Blind (NFB), or the Disability Visibility

Project on social media also serve as important ways to get informed about happenings in,

among and affecting the disability community. Importantly, clients will have their own

opinion and relationship to issues affecting the broader disability community; the provider

should be conscious of these issues through their own research, but should be sensitive and

open to hearing their client’s thoughts and perspectives on how those issues affect them

individually.

Psychologists & professionals with disabilities. In addition to the suggestions

above, there are some additional considerations specifically for psychologists and

professionals with disabilities to aid in their development of allyship skills. Disabled

practitioners, as both members of the disability community and in a position to impact and

develop others’ disability identities in a clinical context, face an important set of concerns in

their practice.

Check internal disability-related biases. While practitioners without disabilities hold

disability biases and prejudices that can be harmful to people with disabilities, disabled

practitioners are also not immune from their own internalized, preconceived notions of

disability (Olkin, 1999). In fact, disabled practitioners have their own, individual

relationships to their disability and are negotiating the same set of societal assumptions and
DISABILITY IDENTITY AND ALLYSHIP 26

clinical expectations in their own lives that they are engaging with in their clients’ lives as

well. This makes disability identity development both an asset for disabled practitioners, and

a process through which they learn both about themselves and how to best serve their clients.

These practitioners must consciously and constantly challenge those ideas, including

privileging certain disability groups or ways of thinking about disability that hide other

intersectional aspects of identity. An anecdotal example of this is when physically disabled

professionals, who have often excelled in large part due to intellect, distance themselves from

those with cognitive or developmental disabilities. Social justice means that distinct groups

must elevate one another instead of standing on top of one another in an effort to champion

their causes.

Embrace cross-cultural disability solidarity. Disabled practitioners should value and

honor the insights and participation of all of disabled community members. In particular, they

must commit “to breaking down ableist / patriarchal / racist / classed isolation between

people with physical impairments, people who identify as “sick” or are chronically ill,

“psych” survivors and those who identify as “crazy,” neurodiverse people, people with

cognitive impairments, and people who are of a sensory minority, as we understand that

isolation ultimately undermines collective liberation” (Sins Invalid, 2016, p. 18).

Conclusions & Implications

In this paper, we have discussed the importance of disability identity in clinical practice

and the ways in which providers can recognize, honor, and support the development of this

identity in their clients. This kind of allyship and attention to identity will allow practitioners

to identify individuals who are at risk for poor health outcomes because they struggle with

integrating their disability and feel disconnected from the larger disability community.

Identifying such individuals will be informative to health care professionals as they develop
DISABILITY IDENTITY AND ALLYSHIP 27

treatment plans, providing perspective on which individuals may benefit from more intense

professional and social support.

These kinds of positive outcomes around disability identity necessitate particular

behaviors and mindsets from providers. Importantly, allyship for disabled and non-disabled

providers alike involves showing up for the disabled community in particular ways: through

action and modeling certain behaviors, but also through constant learning, shifting mindsets

and challenging dominant ideas about disability. Thinking and talking about disability from

this perspective also requires providers, and the field of rehabilitation psychology in general,

to shift their way of seeing disability from primarily medical lenses to social ones. If we are

listening to clients and their experiences around their own disability, this is not a difficult

shift. It represents an honoring and acknowledgement of the lived experiences of disabled

clients, and the ways in which their disability identity, consciously or unconsciously, has

always been one part of who they are.

Figure 1. Who Am I? Activity

Figure 2. Disability Identity Circle

Figure 3. Ways to “Show Up” to Demonstrate Allyship to the Disabled Community

Figure 4. Allyship: Am I Doing It Right? From Teaching Tolerance (Gaffney, 2016).

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Figure 1.

Figure 2.
DISABILITY IDENTITY AND ALLYSHIP 34

Figure 3.
DISABILITY IDENTITY AND ALLYSHIP 35

Figure 4.