Voices of Diversity: Ability and Disability At various points in the past, those with disabilities in the United States have been viewed as weak, sickly, or use

Voices of Diversity: Ability & Disability

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Voices of Diversity: Ability & Disability Program Transcript KATHY PURNELL: Hi, everyone. Welcome to the Voices of Diversity, and the topic for

discussion today is Ability and Disability. And we have two amazing people who are

going to join us for this conversation, and I'm just going to turn this over and let them

briefly tell us who they are, we'll start with Tami.

TAMI FRYE: Hi, I'm Dr. Tammy Frye. I'm a core faculty member with the School of

Social Work, and I've been with Walden for seven years now.

GINA BOWLIN: My name is Dr. Gina Bowlin. I'm a licensed clinical social worker and I

work full time in a health care setting, and I'm a contributing faculty member for Walden.

KATHY PURNELL: My first question that I'm going to pose to Tami first is– the

discomfort around ability and disability can often be difficult for some to discuss or even

understand. Why is this, and why is this not as difficult for others?

TAMI FRYE: I think from the time we're very young, we're taught when we see someone

with a disability, that we look the other direction. We don't look too long at someone

that's different because we could be thought of as staring at someone, and we don't do

that, we look away. We don't want them to be made uncomfortable, so we don't look at

them. And therefore, we almost don't see them, and that carries over, whether it's into

the field of social work or any other area. And it's too easy then to make them invisible,

and we can just make them invisible and not give them attention. Then when they need

help in a grocery store, or when they need help opening a door, or when they just need

to be seen–

I myself found that this was the case when I acquired a disability. I found myself feeling

differently than I was when I was just an able-bodied person. I suddenly found myself

needing help reaching for the upper level items at a grocery store, or getting in a door

that didn't open as easily. And people would just walk right on by, and it made a

difference because people were not comfortable helping or asking if I needed help. And

it goes back to being a young child, and we teach our children those kinds of things.

KATHY PURNELL: Gina, could you respond to the question, why is it some find this

easy or difficult to discuss? And was there a defining moment or personal story, as Tami

just explained for herself, that you would like to share very briefly with us?

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GINA BOWLIN: I think along the lines with what Tami said, we may be taught to

respond to disability in a certain way. But I think, innately as humans, we recognize

difference and automatically think of it as something challenging to understand if it's

different than what we know and what we experience. That said, I think that some

people are more comfortable embracing what's different, or they at least have a heart

that makes them want to bridge that gap. So I tend to think that those people are social

workers, nurses, others in the helping professions, that really enjoy helping bridge that

gap.

I do think, though, that one challenge we face is that many of the accommodations that

are created for disability are created by able-bodied people. And we learned that when I

had a 15-year-old daughter who was suddenly in a wheelchair and ended up in a

wheelchair for a period of about three years. And she learned, and we learned

alongside her, that just because something is accessible does not necessarily mean it's

comfortable or easy.

For example, you can have an accessible bathroom, but the sink could still be out of

reach. Yes it might meet regs, but she may not be able to wash her hands in the sink.

And so that was a real eye-opener for us as parents when we realized that most of the

accommodations out there are designed by people not with those disabilities, but with

able-bodies.

KATHY PURNELL: So my next question focuses a little bit on the history– there is

some historical and current context associated with the topic that we're discussing– and

how does that resonate with you, as social work professionals, and why?

GINA BOWLIN: I would say that I am thankful that we now have better accommodations

for those who need them than we used to have. I believe that historically, those with

disability or in need of accommodations were viewed as people to be set aside in

society. And I believe that now we have more accommodations than ever. Even if

they're not perfect yet, we're moving in the right direction.

TAMI FRYE: Some would say it's an evolutionary thing too. I mean, it goes way back to

when they were warehoused and taken away from the general population because for

whatever reason, and now at least things are done in school systems and among the

working people and that sort of thing to get those of us with different abilities out in the

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general population a little more than it used to be. Though like Gina said, there's still a

long way to go.

KATHY PURNELL: What are some helpful strategies to encourage culturally responsive

practice with individuals who live with varying levels of abilities and/or disabilities?

TAMI FRYE: Don't be afraid to talk about it. By all means, open the conversation with a

client that you may have with a disability or different ability. Talk about it, be– have an

open discussion about it. Find out what ways you can help; what way the client may

need your help; what kind of suggestions; how can I make you comfortable when you're

here; how can I help you, whether it's finding employment, or help you with school, or

whatever to find out what needs– what the needs are.

GINA BOWLIN: I would just add to what Tami said, that I think education is critical, both

for family members and for community members who work with folks that have

disabilities. Just helping them understand that they need to meet the client where they

are, and also helping family members understand the advocacy that they can engage in

to advocate for their loved one.

KATHY PURNELL: I have a son who's now in college– he's a junior in college– and I've

had to really work with him and the institution to think about ways to provide culturally

responsive teaching and learning. What are your thoughts about helping educators, not

just parents? What kind of resources do you think that schools of social work can

benefit from in strengthening cross-cultural understanding with this population?

GINA BOWLIN: That's a bit of a challenging question. Just based on my own

experiences, and maybe it's related to the culture in which I reside, we've really faced a

lot of challenges advocating for folks with regard to their disabilities. And it's almost like

it's been fighting a little bit of an uphill battle. So as far as better preparing helpers, I

definitely think we can do that– but I'm not sure– I'm not sure what the answer is.

KATHY PURNELL: As we know, developing cultural competence is somewhere you

don't get overnight. It's a journey.

GINA BOWLIN: Can I add a brief comment there? I feel like there's a difference

between saying that you provide accommodations– and I think that our education

system– K-12, college level– is really great at saying that they provide the

accommodations. But sometimes in practice, families and clients end up real– like

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realizing conflict when they approach for those accommodations. So I think there needs

to be, along with that education, not just that we do it, but we do it well. And this is why

it's important that we do it and that we engage with folks that need it.

KATHY PURNELL: As we think about today's conversation and the topic, what would

you like students to think about or take away from this discussion? And what would you

want them to know, and why?

TAMI FRYE: That this is not an optional part of social work, that this is a part of social

work that's every bit as critical for them to train in and be knowledgeable about, as

counseling skills, as theories, as anything else they're going to learn about, and it's

something that is important. It's not something that they may or may not learn about,

that it's something that's really urgently important for them to know about before they

graduate.

GINA BOWLIN: I would say first, not to fear what is different, and also, to not be afraid

to engage someone from a different culture with needs because what they're looking for

is for their needs to be met. So not approaching that with fear, and then the next thing

would be being passionate about advocacy because sometimes that's what our clients

need most.

KATHY PURNELL: Thank you. I think that's a good place to end our segment on ability

and disability. Thank you, Gina. Thank you, Tami.

Applying a social model of disability across the life span Shanna K. Kattaria, Angela Laveryb, and Leslie Haschec

aSchool of Social Work, University of Michigan, Ann Arbor, Michigan, USA; bCollege of Education and Social Work, West Chester University, West Chester, Pennsylvania, USA; cGraduate School of Social Work, University of Denver, Denver, Colorado, USA

ABSTRACT With an estimated 21.3% of persons aged 15 and older experiencing disability in the USA, social workers will see clients present with disabilities across all practice settings and stages of human develop- ment. Yet, the training and terminology of social workers—which often closely aligns with medical professionals—may seem to occur in isolating silos or disciplinary theories. Social work education often views the needs of older adults and people with disabilities as two distinct populations, despite the fact that many of these individuals share similar needs for access, resources, and support. Furthermore, when discussing human development, the focus may skew to indivi- dual affective, behavioral, and cognitive processes and indicators of abnormal development and frailty. Thus, by clarifying terminology and applying a social model of disability across the life span, we identify how educational efforts related to human behavior and the social environment can promote intersectional and inclusive social work related to aging and disability.

KEYWORDS Aging; competencies; disability; practice behaviors; social work education

Introduction

A significant portion of the individuals and populations supported by social workers fall in the category of being disabled in some way, such as with physical, intellectual, or devel- opmental disabilities (National Association of Social Workers, 2006), with an estimated 21.3% of persons aged 15 and older experiencing a disability in the USA (United States Census Bureau, 2012). Disability, including functional impairments and cognitive impair- ments among older adults, is listed as a protected status in the National Association of Social Workers’ Code of Ethics (NASW, 2008), and NASW notes the importance of ensuring access, support, and equity for clients with disabilities. Thus, social workers serve clients with disabilities across all age groups in social service settings involving child welfare, schools, health, mental health, and aging services. For many of these settings, the specialty training, terminology, and practice rely on foundational medical models of care with a focus on diagnosis, impairment, and individual coping—which may seem incon- gruent with the field of disability studies, as well as disability advocacy. Thus, with the purpose of reviewing terminology and illustrating how a social model of disability can serve as essential foundational knowledge, we propose ways to integrate this content into human behavior and the social environment courses. Such knowledge may promote the

CONTACT Shanna K. Kattari [email protected] School of Social Work, University of Michigan, 1080 S. University Ave, Ann Arbor, MI, 48109, USA.

JOURNAL OF HUMAN BEHAVIOR IN THE SOCIAL ENVIRONMENT 2017, VOL. 27, NO. 8, 865–880 https://doi.org/10.1080/10911359.2017.1344175

© 2017 Taylor & Francis

inclusiveness and effectiveness of responding to disability issues across specialty service settings and age groups.

Within social work research and education broadly, disability content is often found with great variation in depth and reach, within academic courses and silos, and in separate organizations and policies (e.g., Americans with Disabilities Act, Protection and Advocacy agencies within the National Disabilities Rights Network (NDRN), the American Association for People with Disabilities, Disability Rights Education and Defense Fund, National Association of the Deaf, American Council of the Blind, National Council on Disability, American Association on Intellectual and Developmental Disabilities). As per Bean and Krcek’s (2012) recent study, 80% of the top 25 social work programs in the USA had disability content in course titles or descriptions. Additionally, the number of classes offering disability content per school ranges from only one course up to 26 unique courses, indicating a huge range for how social work educational programs include disability content (Bean & Krcek, 2012).

Furthermore, the Council on Social Work Education’s (CSWE) Educational Policy and Accreditation Standards (EPAS) began requiring the inclusion of disability-related content in BSW and MSW curricula in 2001, yet the 2015 EPAS mentions disability only twice as it relates to diversity (CSWE, 2015). Similarly, while advanced gerontology practice behaviors, as per CSWE Gero-Ed Center (2017) and the Association of Gerontology of Higher Education (2014), mention issues of cognitive, physical, and mental functioning and sensory limitations, the word disability minimally appears anywhere in these specified practice behaviors and competencies.

Given the likelihood that a social worker will have a disabled client at some point during their career, it is crucial that foundational social work education, such as courses on human behavior and the social environment, incorporate disability issues and termi- nology in order to best meet their clients’ needs and fulfill their commitment to the NASW Code of Ethics. Based on the research of disability advocate, researcher and social worker, Romel Mackelprang (2010), CSWE has promoted the inclusion of disability as an additional facet of diversity and inclusion. Yet Mackelprang (2010) critiques NASW for clinging firmly to the medical model of disability and emphasizes on risks and disadvan- tages faced by the individual client—minimal recognition is given to the role of environ- ment in creating the context of disability nor the presence of many social workers with disabilities effectively serving the profession. To our knowledge, little evidence exists to identify where and how within social work curriculum issues of disability across the life span are addressed. Several textbooks for human behavior and the social environment do include chapters on disability and aging (Hutchison, 2017; Lesser & Pope, 2011; Schriver, 2004), thus we propose that this content on a social model of disability may fit well within human behavior and the social environment courses.

Furthermore, these initiatives around disability in social work education often fail to connect how the concept of disability may differ across the life span. For example, intersections between aging and disability services are often found in practice, but not in our research and conceptual models (Putnam, 2007a; Putnam & Stoever, 2007). Even aging services (e.g., adult day centers, area agencies on aging, hospitals, hospices, home- care and home health agencies, institutional long-term care), which often focus on cognitive and functional impairments, may not make the explicit connections to the disability issues or models (Putnam, 2007b). Practice settings are increasingly combining

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aging and disability services through community-based and institutional long-term ser- vices and supports, person-centered and participant-directed care and Aging and Disability Resource Centers (Hudson, 2014). Thus, our terminology needs to explicate how issues of age and disability overlap and are at times distinct over the life span. We propose that emphasizing the use of a social model of disability can offer this clarification and serve as a foundational knowledge competency for human behavior and the social environment courses. Given the focus of many human behavior and the social environ- ment courses on the developmental stages across the life span, the person-in-environment, and the sometimes confounding of age and disability; we assert that incorporating this terminology and the social model of disability is needed. This article offers clarifications on the definitions, language, and overview of a social model of disability, and implications for our educational approaches.

Disability terminology

Defining disability

The act of defining something should be, in thought, quite simple, it can be very difficult in practice, with many potential definitions for the same word (Leonardi, Bickenbach, Ustun, Kostanjsek, Chatterji, & MHADIE Consortium, 2006). The term disability, and how to define it, has been discussed and debated throughout the ages, included inter- nationally by the United Nations Convention on the Rights of People with Disabilities (United Nations Enable, 2006).

It is important to note that disabilities and impairments may be acquired throughout the life span, in addition to being congenital, or existing from time of birth (Smart, 2011). Some clients will age with a lifelong disability while other older individuals may acquire a variety of disabilities at any point in their life course, including old age. For example, neurocognitive disorders can encompass conditions such as dementia, intellectual/devel- opmental disabilities, traumatic brain injury and stroke—some of which may have age as an established risk factor (Centers for Disease Control and Prevention, 2011). Furthermore, disabilities such as arthritis, stroke, vision impairment, and hearing impair- ment that are commonly thought of as related to aging also exist in young and middle- aged persons (Ellis, 2010; Roos, 2005), once again creating a crossover between popula- tions served in health, mental health, aging, and disability service settings. Defining disability is complicated by the many ways it may vary across individuals and conditions, such as in terms of age of onset, severity, or intensity of the condition, and the progressive or episodic nature of the course of these conditions.

Furthermore, it is important to acknowledge how the language and definitions used for people who fit the definition of having a disability have changed over time. More recently, terms that were made popular several decades ago such as handicapped, differently able, and mentally retarded, are now considered inappropriate for use regarding people with disabilities. In the 1990s and 2000s, there was a strong push for the concept of “person first language,” and the term “people with disabilities” was popularized (as were similar person first terms such as person in a wheelchair, person with autism, etc.) (Brown, 2010; Millington & Leierer, 1996). However, the language pendulum has begun to swing back, and disability activists are suggesting that since society and the environment/contexts in which a person lives are actually

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more “disabling” through valuing certain abilities over others than any specific impairment might be, the term “disabled person” or “disabled people” is more appropriate (Brueggemann, 2013; Collier, 2012; Davis, 2013). These advocates also make the point that we use identity adjectives to describe others; a Black man, a lesbian woman, a lower income family, suggesting that it is odd linguistically to use a person’s first language solely for disability-related identities (Mackelprang & Salsgiver, 2015).

Given that people who fit the definition of disability are divided on the language they personally want to be used, this article will use both people with disabilities and disabled people interchangeably to honor all those whose identities fall into this realm. NASW uses the language “mental or physical disability” in the Code of Ethics (NASW, 2008), an interesting decision, given that the overarching language of “mental disabilities” has since been replaced by the disability community with such terms as intellectual and develop- mental disabilities and/or psychosocial disorders and mental health/socio-emotional dis- abilities (Oaks, 2012; Schalock et al., 2010). Additionally, many disability advocates promote the use of the terms neurodiversity and neurodiverse instead of the more diagnostic language of abnormal psychology to refer to issues of autism and others with intellectual, developmental, and learning-related disabilities/impairments (Attwood, 1998; Mackenzie & Watts, 2011). This language moves away from viewing these diagnoses as problematic, and re-centers disability as simply one more facet of diversity present within humanity (Mackenzie & Watts, 2011). As a marker for those who do not experience being neurodiverse, the term neurotypical is used to avoid labeling these individuals as “normal” in comparison (Attwood, 1998).

Given all these complications, we offer this definition of disability that uses the definition of the International Classification of Functioning, Health and Disability (ICF) adopted by the World Health Organization in 2001, in conjunction with the definition adopted and used by the United Nations Enable convention in 2006, and which have been joined in tandem by Leonardi et al. (2006). This defines disability as “a difficulty in functioning at the body, person, or societal levels, in one or more life domains, as experienced by an individual with a health condition in interaction with contextual factors” (p. 1220, 2006). This definition acknowledges the variety of disabilities and impairments that fall under the term of “disability,” the fact that difficulty in functioning may occur at many levels and severities, and places this within context, or the fact that different environments may have different expectations for and social constructions regarding ability, resulting in differential impact of disability on any individual. Moreover, this definition of disability, while including the term “health,” does not refer to diagnoses as part of the definition, moving away from the medical model of disability, and towards the social model of disability, impairments, and ability expectations (Shakespeare, 2006; Union of the Physically Impaired Against Segregation, 1974).

The WHO’s ICF is important to include in this discussion, as it offers […] a standard language and framework for the description of health and health-related states […] .ICF is a multipurpose classification intended for a wide range of uses in different sectors. It is a classification of health and health-related domains—domains that help us to describe changes in body function and structure, what a person with a health condition can do in a standard environment (their level of capacity), as well as what they actually do in their usual environment (their level of performance). (WHO, 2002).

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This definition of health, which is inclusive of disability, impairment, and differential functioning, is helpful for service professionals in re-assessing how disability can be seen as a difference that is part of human diversity, rather than something problematic that should be “fixed” or “rehabilitated.” The ICF is designed to support a variety of profes- sional issues related to disability, including but not limited to policy creation, research, and clinical interactions. On an individual level, functioning becomes more of the focus, with questions such as “what is this person’s level of functioning? What treatment or interventions can maximize functioning? What are the outcomes the treatment?” (2002, p. 6), while at the institutional level, ICF suggests asking questions such as “how well do we serve our clients? How useful are the services we are providing?” (2002, p. 6). From an overall social perspective, questions might include “what are the needs of various persons with disabilities—impairments, activity limitations and participation restrictions? How can we make the social and built environment more accessible for all persons, those with and those without disabilities? Can we assess and measure improvement?” (2002, p. 6).

When conceptualizing the role of disability in a practice setting, these are some factors that may need to be considered to individualize this definition for each client:

(1) client’s language preference regarding disability and narrative for the impact of the condition on one’s life;

(2) client’s experience of the condition across the life span: age of onset, duration and nature of course of condition, level of impairment and distress from the condition, and the societal response to the condition (i.e., barriers, stigma);

(3) social and community resources available that may be age or condition specific; (4) client’s relationship with their disability/impairment and their identity (or lack

thereof) around it; some individuals embrace having a disabled identity while others may feel stigma or shame regarding this part of themselves;

(5) how members of clients’ family systems regard disability and impairment; (6) organizational and government policies regarding disability and access to support; (7) intersectional identities of the client, including but not limited to race, sex, gender

identity, sexual/romantic orientation, socioeconomic status, religion, citizenship, age, family status, etc.;

(8) geographic location (regarding both region, and setting such as urban, suburban, rural).

Social model versus medical model of disability

Much of social work education and practice approaches the concept of disability and people with disabilities from a medical model of disability (Mackelprang, 2010), given the medical dominance in many aging, health, and mental health service settings. This medical model, which arose from a moral model around disability/impairment, actively pathologizes those who are disabled and sees disability as something broken that needs to be fixed (Mackelprang & Salsgiver, 2015). Rather than recognizing all of the factors that may impact individuals with disabilities and how they interact with their environment, this medical model centers only on the disability or impairment itself, viewing the

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individuals and their body/mind as the problem, while claiming to be objective and therefore unbiased (DeJong, 1979; Watson, 2012). By operating on this model, social work inherently places disability as “less than,” an experience of loss when it coincides with aging, or even something to be fixed, as suggested by the use of language connecting disability and rehabilitation (such as the Journal of Social Work in Disability and Rehabilitation). Another example is the fact that NASW uses the language “social workers help people overcome some of life’s most difficult challenges: poverty, discrimination, abuse, addiction, physical illness, divorce, loss, unemployment, educational problems, disability, and mental illness” (NASW, 2010). By including disability alongside poverty, addiction and other negative things as something to be overcome, this may further reinforce the medical model of disability as non-normative and problematic.

The social model of disability originally stems from a movement within the UK between the work of the Union of the Physically Impaired Against Segregation and the Disability Alliance (Oliver, 2013, 1990; Owens, 2015). This movement created awareness of disability as a social construct, and focuses on society’s systemic role in oppression of those with impairments, or whose bodies/minds engaging the world outside of socially constructed expectations of ability. Michael Oliver further developed this work and proposed the social model of disability. Oliver’s work (1990, 2013) asked social workers to use a critical lens when considering the individual and medical models of disability, and to start to refocus this lens on “[…] the disabling impact of society” (Oldman, 2002, p. 798).

This social model of disability (Shakespeare, 2006; Union of the Physically Impaired Against Segregation, 1974) recognizes impairment as distinguished from disability; it defines impairment as individual and private (someone who is blind, or has limited mobility), while defining disability as structural and public (society’s reaction to impair- ment, which then “disables” individuals by how their impairments operate within an ableist society). While the medical model treats disability as an individual problem, one that should be “fixed,” the social model understands disability to be a social creation, specifically the relationship between an impairment and a society that is disabling (Shakespeare, 2006).

The social model also supports non-disabled or able-bodied/neurotypical individuals being able to learn from people with disabilities, and viewing them as valuable members of society (Cameron, 2014). The social model is not suggesting that society pretend that disabled people or those with impairments do not exist. However, it posits that by acknowledging impairments as difference, and not as problems, and by creating more accessible and inclusive spaces and policies, people would be free to engage in their lives in whateve

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