Rehabilitation Counseling Associations and the Disability Community: A Return to Social Action

Author Note

Although APA style conventions and professional discourse support the use of person- first language in academic writing about disability, we intentionally used identity-first language throughout this paper. This choice is consistent with preferred language for recognizing disability as a social construct. One author identifies as disabled and we chose to use identity-first out of respect for the disability community.

Introduction

Advocacy is at the core of our work as rehabilitation counselors (Hartley et al., 2015). Professional standards, such as the Commission on Rehabilitation Counselor Certification (CRCC, 2017) Code of Ethics, clearly mandate the ethical responsibility for rehabilitation counselors to “advocate at individual, group, institutional, and societal levels to (1) promote opportunity and access, (2) improve the quality of lives of individuals with disabilities, and (3) remove potential barriers to the provision of or access to services” (p. 14). Similarly, the American Counseling Association (ACA, 2014) Code of Ethics requires all counselors to “advocate at individual, group, institutional, and societal levels to address potential barriers and obstacles that inhibit access and/or the growth and development of clients” (p. 5). Given our ethical responsibilities and professional identity, rehabilitation counselors often claim disability competence, with the belief we are leading the charge in disability advocacy. However, claiming disability advocacy without critiquing ourselves prevents us from continuing to evolve as a profession. As the disability activist Stella Young once said, “disability doesn’t make you exceptional but questioning what you think you know about it does” (Young, 2014). Although rehabilitation counseling has been at the forefront of advocacy for disability services, rehabilitation counseling is still a byproduct of the medical model, riddled with paternalistic attitudes that perpetuate disability as a personal tragedy requiring professional help (Burk, 1971; Hartley & Saia, in press).

More than services, there is a need to engage in deep reflection regarding how disabled people are viewed and treated within rehabilitation counseling associations. We cannot assume we are free from disability bias by nature of the fact we are rehabilitation counselors. In fact, rehabilitation counselors may be susceptible to the paternalistic tendencies of ableism and the medical model, including a belief they know disability advocacy without input from disabled people (Mitus & Levine, 2021). Ableism often takes the form of prejudicial attitudes and discriminatory behavior rooted in a false belief that disabled people are inferior and thus need to be fixed or cured by professionals (Piepzna-Samarasinha, 2018). It is not enough to teach about disability rights and advocacy if we are unwilling to evolve our understanding of disability as part of a larger dialogue with the disability community (Saia et al., 2021). Social action and advocacy cannot be an afterthought; rather, they need to be a proactive, actionable choice to build a professional culture that is not only accessible but welcoming to disabled people. This means making room for new perspectives within our associations, including the fact that disabled people’s voices and the lived experience of disability add value to the profession.

Historically, advocacy and social action with disabled people have represented the central mission of rehabilitation counseling associations. The National Rehabilitation Association (NRA) was founded in the early 1920s by the grassroots advocacy of state administrators of vocational rehabilitation agencies (Emener, 1986). Early on, the NRA championed two important roles: (a) professionalization of the field and (b) social action for disability rights (Whitten, 1959). The professional role promoted professional opportunities and programs, while the social action role was concerned with problems impacting the lives of disabled people and their families. Indeed, the most recognizable role of the NRA for many years was social action, partly because the early membership included rehabilitation professionals alongside community members such as citizens, policymakers, and disabled individuals and their families (Sales, 1986). As a broad coalition, the NRA was an “initiator of major landmark legislation on behalf of individuals with disabilities … including civil rights advocacy” (Sales, 1986, p. 10). Key social action accomplishments of the NRA included advocacy and social action to pass rehabilitation legislation and amendments in 1943, 1954, 1965, 1968, 1973, and 1978.

In later years, the NRA began to decline in its ability to engage in social action for disability rights (Whitten, 1975). By the mid-1970s, an increasing number of legislative concerns went beyond the NRA’s resources. Specifically, changes to Social Security, public welfare, Workers’ Compensation programs, and health insurance reflected the evolving scope and depth of rehabilitation services. Unable to be all things to all people, the NRA struggled to compete with other associations focused more exclusively on rehabilitation counselors, rather than a broader coalition of disabled people and related professions (Phillips & Leahy, 2012). By the 1970s, the National Rehabilitation Counseling Association (NRCA) and the American Rehabilitation Counseling Association (ARCA) had emerged as growing divisions specific to rehabilitation counselors within the broader associations of the NRA and the American Counseling Association (ACA), respectively. Furthermore, associations such as the National Association of Multicultural Rehabilitation Concerns (NAMRC), the National Council on Rehabilitation Education (NCRE), and the International Association of Rehabilitation Professionals (IARP) represented growing areas of rehabilitation counseling. These competing associations diluted professional resources and ultimately eroded the social power of the NRA.

Overtime, the emphasis on social action within rehabilitation counseling professional associations has declined. Since the 1970s, the social action efforts that characterized the NRA were replaced by professional advocacy as associations in rehabilitation counseling were engaged in a significant period of professionalization. Professional advocacy was needed to address barriers to rehabilitation counselors’ ability to provide the broadest scope of services possible (Emener & Cottone, 1989). This meant associations in rehabilitation counseling collaborated and leveraged their resources to codify and endorse credentialing mechanisms of accreditation, certification, and licensure (Tarvydas et al., 2016). With an emphasis on the professional role, there were changes in who was eligible to vote and participate in associations, reducing participation of non-professionals (Sales, 1986). The result diminished the membership of disabled people and their family members. Without the broader coalition of professionals and non-professionals, associations in rehabilitation counseling became increasingly distant from the grassroots advocacy of disability rights and consumer advocacy groups. The cost of professionalization was less political power to engage in social action for disability rights.

At the same time the NRA was losing its foothold in social and legislative advocacy, the Disability Rights Movement was coalescing in the United States. In 1977, the American Coalition of Citizens with Disabilities (ACCD) organized national protests to demand implementation of Section 504 of the 1973 Rehabilitation Act (Barnartt & Scotch, 2001; Longmore, 2003). During these protests, a cross-disability identification emerged as “a sense of common identity and interests that unite disabled people and separate them from their nondisabled counterparts” (Barnes & Mercer, 2001, p. 522). Today, disability rights and consumer advocacy groups such as National Council on Independent Living (https://ncil.org/) and ADAPT (https://adapt.org) have been at the forefront of social action and advocacy to promote a more inclusive society for disabled people. As an illustration, ADAPT organized successful civil rights protests in 2017 to counter potential cuts to Medicaid funding, which were viewed as a direct attempt to kill sick and disabled people (Piepzna-Samarasinha, 2018). News images and narratives of the 2017 protests mirrored those from the 1977 protests with quotes such as “These are issues of life and death. Freedom or incarceration. And disabilities advocates are rising to the challenge” (Stein, 2017, line 20-21). While physicians participated in the 2017 protests and wore lab coats to demonstrate their solidarity with disability activists, a lack of visible representation and expressed statements of support from rehabilitation counselors was a missed opportunity.

In contrast to the early days of the NRA when professionals and non-professionals came together to engage in social action, there is a noticeable gap between the advocacy efforts of rehabilitation counseling associations and disability rights groups. In fact, a qualitative study of rehabilitation counseling leaders explicitly called for a return to social action, including an emphasis on disability-related legislation to address issues impacting the lives of disabled people (Nerlich et al., 2022). Calling for more collaboration with disability advocacy groups, another research study of association leaders concluded that “it is our ethical responsibility to our stakeholders and to ourselves to reimagine such an organizational vehicle and to invest in its efficacy and sustainability” (McCarthy, 2020, p. 8). These studies are consistent with previous calls for associations in rehabilitation counseling to engage in advocacy and social action to address issues directly impacting the lives of disabled people and their families (Leahy et al., 2011). With more effective social action and advocacy, rehabilitation counselors may have been able to effectively lobby against the reauthorization of the Workforce Innovation and Opportunities Act (WIOA), which some have argued to have de-professionalized rehabilitation counseling and negatively impacted the lives of disabled people (Nerlich et al., 2022). The larger point is a return to social action with disabled people and their families is critical to the social power of associations in rehabilitation counseling to advocate for disability rights.

Importantly, social action and professional advocacy are not mutually exclusive in an applied field like rehabilitation counseling. In fact, engaging in social action is actually part and parcel of the professional role. Over the years, rehabilitation counseling has been an important mechanism for offsetting the economic and social disadvantage associated with disability (Hartley & Tarvydas, 2013). A dual focus on social action and professional advocacy can only increase the effectiveness of rehabilitation counseling. This was evident in the early success of the NRA’s social action efforts to pass rehabilitation legislation and amendments. These amendments removed barriers to the lives of disabled people, while also increasing the demand for professionally trained rehabilitation counselors. For this reason, Mills (1980) argued:

We need disabled people and their families in our membership. We need them not just to swell our membership numbers or to help us do what we want to do. We need them on our board, in our commissions and committees, involved in our policy making and planning and decision making as we set our goals and priorities. We need them to help change us so that we see the reality of America…through the life experience and frustrations of people who are disabled. (p. 15)

The complementary nature of social action and professional advocacy is one way to lift disabled people’s voices and enhance the relevance and effectiveness of rehabilitation counseling.

In this article, we argue for associations in rehabilitation counseling to return to social action. However, in order for social action to have legitimacy, it is imperative that associations in rehabilitation counseling partner with disability rights and consumer advocacy groups. This will require associations to find more of a balance between the professional and social action roles first developed by the NRA. In what follows, we pose considerations for how associations in rehabilitation counseling can create the cultural norms and values necessary to partner with the social action efforts of disability rights and consumer advocacy groups.

A Return to Social Action

Associations in rehabilitation counseling need to embrace a progressive understanding of disability and welcome new perspectives. Otherwise, it will be impossible to effectively partner with the social action efforts of disability rights and consumer advocacy groups. Most rehabilitation counselors have a general awareness of the limitations of the medical model, yet fewer can articulate the ways in which the medical model is still entrenched in our discipline and mindsets. With this in mind, there is a need to deeply reflect on how we think, understand, and construct disability in rehabilitation counseling.

Moving away from the medical model and its focus on pathology and cure, it is important to embrace the social model and its view of disability as a social, political, intellectual, and ideological issue (Davis, 2021). As Swain et al. (2003) noted:

This is a shift in thinking of disability as a condition of the individual, to understand disability as a condition of a society in which people with impairments are discriminated against, segregated and denied full participative citizenship. It is a shift in ‘disabled’ being seen as a personal tragedy, to ‘disabled’ being a positive identity. And it is a shift from dependency and passivity, to the rights of disabled people to control decision-making processes that shape their lives. (p. 1)

In this article, we pose considerations for how rehabilitation counseling associations can commit to amplifying disabled people’s voices and the lived experience of disability. This means making conscious decisions about where meetings are held, ways people can participate, where the power is located within the organization, who the stakeholders are, and who has access to information. The sections that follow are not meant to be a checklist. Rather, the intent is to encourage critical reflection by stepping back to reexamine how disability is viewed and treated within associations and the profession more broadly. More than awareness, we believe that associations in rehabilitation counseling must evolve by taking action to align themselves with the norms and values of disability rights and consumer advocacy groups.

Affirming Disability Culture and Identity

Disability continues to go unrecognized as a valid cultural identity. Davis (2011) asked, “Is this simply neglect, or is there something inherent in the way diversity is considered that makes it impossible to recognize disability as a valid human identity?” (p. 4). Part of the problem is that the medical model has promoted a cultural narrative of disability as an individual experience and personal tragedy, rather than a social construct shaped by inequity and oppression (Davis, 2021). In contrast to the medicalization of disability, disability culture is the celebration of complex identities of disability that intersect with other social identities such as gender, race, and sexual orientation. In other words, disability culture recognizes differential experiences of disability for men and women, middle-class White and nondominant minority communities, and heterosexual and lesbian, gay, bisexual, and transgender people.

Rehabilitation counseling associations need to embrace disability as it intersects with other cultural identities and systems of oppression. A useful lens for affirming disability culture is the Disability Justice Movement (Piepzna-Samarasinha, 2018). With its emphasis on the people most impacted by systems of oppression, Disability Justice rectifies more limited understandings of the embodied experience of disability among white, heterosexual, cisgender men as reflected in the early years of the Disability Rights Movement (Hartley & Saia, in press). In this way, Disability Justice is concerned with multiple forms of oppression experienced by particular groups, such as disabled people of color, disabled immigrants, and queer disabled people (Berne et al., 2018). Rejecting the notion that ableism can be separated from racism, sexism, and other systems of oppression, intersectionality is one of the core principles of Disability Justice (Sins Invalid, 2015). Compared to the more general social model of disability and its focus on systemic barriers, Disability Justice is a more nuanced lens for understanding the unique but varied embodied experience of disability.

By embracing Disability Justice as an inclusive and collective movement, rehabilitation counseling associations can adopt a progressive understanding of disability that is more complex, interconnected, and whole (Mingus, 2011). It is thus important for associations to affirm disability culture and identities in ways that embrace intersectionality, including contributions from Black, brown, and queer disabled folks. Some questions for critical reflection:

• How would our associations be different if the principles of Disability Justice were at the forefront of our work?

• How can we challenge practices in associations that force us to silo disability identities without consideration for the impact of other social identities?

• What actions can our associations take to promote intersectionality in ways that value the depth of the disability experience from the lens of diversity, equity, and inclusion?

Combatting Ableism and Ableist Practices

Distrust of rehabilitation professions and professionals exists within academic disability communities, such as the Society for Disability Studies (https://disstudies.org/). One reason is that the medical model has traditionally been the central focus of rehabilitation research and policy decisions and, as a consequence, many in the disability community have viewed this knowledge base as “oppressive” (Bricher, 2000, p. 781). In response, the Society for Disability Studies has critiqued medical model research as ableist by challenging the notion of disability as primarily a medical category studied and treated by specialists in fields such as rehabilitation counseling that position disabled people as abnormal (Linton, 1998).

Rehabilitation counseling associations need to critically reflect on ableism and its connection with other prejudices such as racism and sexism. Disability studies scholars have argued how ableism has been used to justify inequality for people with disabilities and other groups of people, including women and Black Americans (Baynton, 2013; Block et al., 2001). In fact, ableism has been described as a way to rationalize who is valuable and worthy in society and thus deeply rooted in the types of problematic belief systems underpinning anti-Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism (Lewis, 2022). For instance, women were mislabeled as inferior physically, intellectually, and psychologically and were not considered worthy of citizenship or equal employment until the Women’s Suffrage Movement (Baynton, 2013). Furthermore, a common 19th-century justification of slavery in the United States was that Black Americans lacked sufficient intelligence to participate on an equal basis in society (Baynton, 2013). Similar to racism and sexism, ableism is the misrepresentation of disability, which means a person does not have to have a disability to experience ableism. This conclusion is possible because ableism is not based on actual ability; but rather, ableism is the social construction of what makes a “normal” or worthy body and what does not (Crip Camp, n.d.).

There is a need for more critical consciousness of ableism within the structures and policies of rehabilitation counseling associations. Importantly, ableism is not just something that happens outside of us, but also within our discipline. Trust from the disability community is enhanced as we acknowledge and correct it. For this reason, it is critical for associations to call out ableism and dismantle limiting definitions of disability in order to build trust with the disability community. With trust, authentic discussion and collaborations with disability rights and consumer advocacy groups can follow. Some questions to consider for critical reflection:

• How can associations engage in critical reflection regarding how ableism may be reflected within current rehabilitation counseling policies and practices?

• How can association leaders thoughtfully collaborate with disabled people and members of disability rights and consumer advocacy groups without tokenization?

• What actions can associations take to address issues of ableism to demonstrate their commitment to listening to the voices of disabled people and their families?

Engaging Language as Action

Language has the power to send messages about who is valued and worthy in communities. Rather than person-first language (e.g., person with a disability), many in the disability community use identity-first language (e.g., disabled person) to reinforce and celebrate disability as a positive and valid human identity (Dunn & Andrews, 2015). This contrasts with the professional use of person-first language by authorities such as the American Psychological Association (APA) publication guide. Only recently have the APA writing guidelines expanded to include the use of both person-first and identity-first language. It is important for professionals to be aware of this change and respect the use of identity-first language. Viewing or applying outdated APA publication guides as a rigid recommendation takes power away from disabled people and limits more progressive understanding of disability (Saia, n.d.). Disability activists are less likely to collaborate with associations using language created by professional groups that is a byproduct of the medical model.

An important language consideration is whether the mission statements of associations mention disability and disability rights. Table 1 provides examples of mission and purpose statements from several of the associations in rehabilitation counseling. Most describe themselves as a professional home for rehabilitation counseling. Interestingly, the word disability is only found in two of the mission statements. The absence of the word disability is a problem. Unfortunately, we are living in an era where the word disability is being erased in popular culture and replaced with euphemisms such as challenged, “handicapable,” differently abled, and special needs, which intentionally obscure any real meaning (Andrews et al., 2019; Ladau, 2021). The absence of the word disability is inconsistent with a progressive understanding of disability. Associations need to uplift disability language as central to their mission statements.

Finally, an association in rehabilitation counseling committed to social action needs to name ableism and systemic barriers within their mission statements. Indeed, the NRA is one of the only rehabilitation counseling associations with a mission statement that mentions social and legislative advocacy (See Table 1). In addition to the mission statement, social action should be named in diversity, value, and vision statements that convey an association’s commitment to equity. An example of a vision statement could be: “A world where disabled people have equal opportunity to participate fully in all aspects of life…where communities are barrier-free, and access is universal…where discrimination is unthinkable” (National Disability Mentoring Coalition, n.d.). More than just marketing, the mission statement and other public facing documents must be linked with actual policies and practices that are consistent with the norms and values of the disability community. In constructing such documents, rehabilitation counselors need to recognize and mirror language from the disability community. Some questions for critical reflection:

• In what ways do our mission statements send messages to disabled people and their families about the professional practice of rehabilitation counseling?

• How can we ensure the language of mission statements captures the complementary roles of social action and professional advocacy?

• What actions can be taken to ensure the language of our mission statements align with the norms and values of disability rights and consumer advocacy groups?

Centering the Voices of Disabled People

We often hear the phrase “representation matters.” This is especially true within applied fields that provide services to disabled people and their families. As Ladau (2021) pointed out: “disabled people are the experts on our own lives. So please, don’t speak for us, about us, or over us. Speak to us and with us” (p. 144). Centering authentic representations of disabled people does not happen overnight in a rehabilitation system that has historically kept them on the outside looking in. If we continue to shift the paradigm towards the social model, rehabilitation counseling associations can build organizations and structures that support authentic representation of disabled people.

Ideally, the membership of rehabilitation counseling associations would reflect and center the voices and lived experience of disabled people. While it may be unrealistic for a rehabilitation counseling association to have an executive board of 51% disabled individuals like Centers of Independent Living, intentional representation and recruitment of disabled voices is key. It is interesting to have to state the need for disability representation given that disabled people represent almost a quarter of the United States population (Lauer & Houtenville, 2018). Yet, within associations, it is unlikely that a quarter of the board members identify as disabled. Central to supporting more disabled professionals as leaders of associations is the need to break down the false dichotomy of nondisabled professionals and disabled clients. In order for this to happen, it is important for organizations to cultivate a culture where disabled professionals feel valued and safe to embrace their culture and disability identity which reflects the Disability Justice principle of wholeness (Sins Invalid, 2015). In a perfect world, associations in rehabilitation counseling would be a safe place for disabled people to be unapologetically themselves (Corker, 2001). This would create a climate where disabled people could more easily be represented within the leadership of associations, another core principle of Disability Justice. We must intentionally build a structure that supports disabled leaders as adding a critical perspective and voice within associations.

There are many ways for associations in rehabilitation counseling to include the representation of disabled voices and perspectives. First, it is important for associations to hire disabled people as full-time staff members and consultants to improve disability culture and accessibility practices within associations. In addition, associations should enlist the expertise of disabled scholars and advocates to lead workshops, deliver keynotes, and act as a liaison between the association and the larger disability community. This not only helps the association, but also recognizes the value of the work and talent of disabled people. The larger point is that associations need to amplify and lift the voices and perspectives of disabled people.

Some questions for critical reflection:

• Who is represented on the association board and who is missing?

• How can our associations call on and support the expertise of disabled people to share their voices and experiences within the profession?

• What actions can be taken to develop mentorship programs within our associations that actively cultivate disabled people to step into leadership positions?

Committing to Accessibility

Accessibility is a term often used to address physical barriers. Yet, access issues are not limited to ramps, curb cuts, captions, or braille (Thomas, 2020). Thus, it is important to move beyond a limited framework of only physical access. Rather, access should be viewed as sharing our humanity and dignity, growing access intimacy with each other, and creating more justice and love in our world. Mingus (2011) described access intimacy as an elusive feeling that occurs when someone else “gets” your access needs. It is not about charity or the action of helping someone. Mingus (2011, para. 8) continued:

It is a freeing, light, loving feeling. It brings the people who are a part of it closer; it builds and deepens connection. Sometimes access intimacy doesn’t even mean that everything is 100% accessible. Sometimes it looks like both of you trying to create access as hard as you can with no avail in an ableist world. Sometimes it is someone just sitting and holding your hand while you both stare back at an inaccessible world.

Access Is Love is a project created and lead by Sandy Ho, Mia Mingus, and Alice Wong which aims to build a world where accessibility is understood as an act of love, instead of a burden or an after-thought. It is about the genuine expression of care and understanding. As part of the project the project Ho, Mingus, and Wong (n.d.) have complied a list of resources and further readings. Associations in rehabilitation counseling should review the readings and resources page to learn more about access. Access as love is not an obligation or chore, but an act of care.

Access intimacy is what rehabilitation counseling associations must strive for at their events, membership meetings, and conferences. From the lens of universal design, disabled people should not have to request special accommodations to participate in the association. Rehabilitation counseling as a profession should aim for collective access as another core principle of Disability Justice (Sins Invalid, 2015). We need to not only create accessible spaces, but we must make space for conversations about supporting disabled people within rehabilitation counseling associations. These means listening to the experiences of disabled professionals who have experienced countless barriers to attending national conferences. Rehabilitation counselors cannot get to access intimacy if we do not create a culture that values accessibility beyond minimum legal requirements.

To move towards equity, access should be a collective responsibility. It is all of our responsibility to think about and help create accessible spaces and community. This is not about everything being 100% accessible, but centering access as a core part of the world we want to live in together (Disability and Intersectionality Summit, n.d.). Sins Invalid (2020) provides a comprehensive list of access suggestions for public events and mobilizations for including disabled people in spaces and conversations. Associations need to review these guidelines and consider the ways in which they constantly improve access and accessibility.

Some questions to consider as you engage in reflection:

• In what ways can we be transparent about accessibility within our associations without being defensive when disabled professionals have frustrating experiences?

• How can we work to build a structure that can support proactive measures of universal design rather than retroactive approaches of individual accommodations?

• What actions can associations take to close the gap between accessibility and equity for disabled professionals when hosting conferences and professional meetings?

Conclusion

The early emphasis on social action that characterized the NRA has declined over the years, making it challenging to mobilize and collaborate with the disability community. As part of re-engaging in social action, associations must look at language and ableism within their own policies and practices as a way to strengthen their relationship with disabled people, who have spent countless years on the outside looking in. In particular, there is a need to engage in deep reflection regarding how disabled people are viewed and treated within associations and the profession more broadly. As we embark on this journey, we must broaden the way we think about both diversity and disability to cultivate associations committed to social action for disability rights. A return to social action with disabled people and their families is critical to the future viability and relevance of associations in rehabilitation counseling.