Elspeth Slayter, MSW, MA, PhD
Lisa Johnson, MSW, PhD
This chapter presents an introduction to disability social work concepts and principles. We define disability in the United States context, while illustrating the social and medical models of disability. We move on to explicating disability identity and disability culture. A section on explaining various perspectives on ableism in the United States context is presented. We conclude with an introduction to basic principles for empowerment-oriented disability social work along with the disability justice movement’s ten principles.
The Social and Cultural Construction of Disability
We will focus on learning about broad categories of disability and understanding prevailing models of disability, though it is beyond the scope of this chapter to cover every type of disability one might encounter in practice with the disability community. Defining is not a simple process, given that disability, like many identities, is socially constructed. A is an idea that has been created and embraced by people in society. Wendell (2013) offers a perspective on the social construction of disability:
I see disability as socially constructed in ways ranging from social conditions that straightforwardly create illnesses, injuries, and poor physical functioning, to subtle cultural factors that determine standards of normality and exclude those who do not meet them from full participation in their societies. (p. 481)
When thinking about how to define disability, it is helpful to make a distinction between a person’s impairment and a person’s disability. is a physiological condition that can lead to disability while disability is a result of people living with impairments when there are physical, attitudinal, communication, social, or other barriers in the environment (People with Disabilities Australia, 2016; Cameron, 2014). Wendell (2013) points out that:
Many of the struggles of people with disabilities, and much of what is disabling, are the consequences of having those physical conditions under social arrangements that could, but do not, either compensate for their physical [or mental] conditions, or accommodate them so that they can participate fully, or support their struggles and integrate those struggles into the cultural concept of life as it is ordinarily lived (p. 483)
Wendell (2013) also offers thoughts about the cultural construction of disability, noting that:
Culture makes major contributions to disability. These contributions include not only the omission of experiences of disability from cultural representations of life in a society, but also the cultural stereotyping of people with disabilities, the selective stigmatization of physical and mental limitations and other differences (selective because not all limitations and differences are stigmatized, and different limitations and differences are stigmatized in different societies), the numerous cultural meanings attached to various kinds of disability, and illness, and the exclusion of people with disabilities from the cultural meanings of activities they cannot perform or are expected not to perform. (p. 484)
An example that speaks to impairment and the social and cultural constructions of disability is found in the fact that, many people, an estimated 75% of U.S. adults, have vision impairments for which they wear eyeglasses or contact lenses (The Vision Council, 2017). The availability and social acceptability of these corrective lenses means that this impairment is not necessarily disabling if individuals’ access and functioning is not impeded. However, if someone with a vision impairment does not have access to corrective lenses (perhaps due to lack of financial means, or limited insurance coverage), or if their vision is not sufficiently corrected by the lenses, their impairment coupled with the ways our physical, social, and policy environments are structured (e.g., requiring yearly eye exams to update lens prescriptions while only covering the cost of the exam every other year), would be disabling.
Understandings of Disability in the United States
Disabilities can vary widely and be related to vision, hearing, motor skills, cognition, health, mental health – or a combination of any of these. One common understanding of disability in the United States is mapped out by the Americans with Disabilities Act, 42 U.S.C. § 12101 et seq. (1990). To be covered by this law, a person must be disabled, which is defined as being “a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment” Americans with Disabilities Act, 42 U.S.C. § 12101 et seq. (1990). The law does not outright name all of the impairments that are covered, so we categorize the major categories here.
People with visual disabilities include people with total blindness, low vision, partial sight, or color-blindness – different people embrace different language/identifiers for themselves. Disability aids such as glasses and screen readers may be used by people in this population. Hearing disabilities are experienced by people who have deafness or are hard-of-hearing, though it should be noted that many people who are d/Deaf do not identify as disabled or consider deafness a disability. Disability aids such as captions or cochlear implants may be used by this population. Those with motor disabilities may have motor challenges or issues with gross or fine motor controls. Cognitive disabilities are experienced across a spectrum from intellectual and developmental disabilities to learning disabilities (who tend to use person-first language, that is, “person with a disability” vs. “disabled person”, which is identity-first language) and memory challenges. Mental health conditions exist along a spectrum from neurotic to psychotic symptoms, including depression and mania, for example (people in this community also tends to use person first language). Physical disabilities may include movement challenges, requiring disability aids such as canes, walkers, wheelchairs and scooters. Health challenges may be acute, long-term/chronic or episodic.
Disability can also be temporal. Some disabilities may be temporary, while others may be permanent (Zola, 1993). Some disabilities are experienced from birth while others can be acquired later in life. Castañeda and colleagues (2013), use the term “” to raise consciousness that people who do not have disabilities may become disabled by illness, the process of growing older, accidents, and war, for example” (p. 461).
Disabilities are commonly thought of as either visible or invisible disabilities. Visible disabilities include, for example, conditions experienced by a person with Cerebral Palsy who uses a walker, or by a person with Down Syndrome. An invisible disability might be a condition such as traumatic brain injury, the B/blind community (when they have partial sight), Systemic Lupus Erythematosus (an autoimmune disorder), or bipolar disorders, all of which are not visible and must be disclosed in order to be identifiable. For an extended and intersectional discussion of the hard to see line between visible and , please see this essay by Zipporah Arielle (2019). The take home message here is that we cannot rely on assumptions and tropes as we work to identify and engage with disability in our social work practice.
Debates about the right language to use in talking about disability are ongoing. For many years, has been deemed a respectful approach to describing people with impairments, and for some practitioners and communities, it still is. More recently, many disability rights advocates have rejected person-first language and have embraced (sometimes called ‘disability-first language’) with an unapologetic embrace of disability as a social (and cultural) identity. In this chapter, we use both identity-first language due to the preference of the authors and person-first language when citing other sources. However, in practice, always take the lead of the person or people you are working with when considering whether to use identity-first or person-first language.
Prevalence of Disability
Over one fourth of Americans live with an impairment that causes a disability (Center for Disease Control and Prevention (CDC), 2021). \As noted in the above discussion of disability and impairment, differentiating between impairment and disability is a challenge, so establishing the prevalence of disability in a given locale is not a straightforward matter and generally uses a medicalized approach. In the United States, public health officials define disability across a spectrum, including challenges to mobility (i.e., walking or climbing stairs), cognition (i.e. concentrating, remembering or making decisions), sensory (i.e. seeing, hearing), self-care (i.e. dressing or bathing, known as some of the activities of daily living) and independent living (i.e. cooking or doing errands alone, known as instrumental activities of daily living). Drawing on this approach to the definition of disability, 27% of U.S. adults had a disability – over 61 million people (Varadaraj et al., 2019).. The most common types of disabilities were related to mobility (13.7%), cognition (10.8%), independent living (6.8%), vision (4.6%) and self-care (3.7%) (CDC, 2021).
In addition to obtaining an overall prevalence rate, it is important to look at age variations, geographic differences, and social identity categories in order to consider the potential for disability intersectionalities. Looking within the U.S. population with disabilities, 51.0% were people aged 18-64 (Kraus, Lauer, Coleman, et al., 2018). Those aged 65 and older comprised 41.4% of the population (Kraus, Lauer, Coleman, et al., 2018). Disabled children and youth comprised only 7.3% (ages 5-17) and 0.4% (under 5 years) (Kraus, Lauer, Coleman, et al., 2018). We know that significant differences in the overall rate of disability exist state to state, ranging from 16.4% in Minnesota to 31.5% in Alabama, suggesting that social conditions may impact disability prevalence. While southern states had the highest prevalence rate, lower rates were reported in the Midwest and West. Disability may also be gendered in nature because women report higher rates of disability (24.4%) than do men (19.8%), while data on other genders remains uncounted and unknown (Courtney-Long, Carroll & Zhang, et al., 2013). This gendered pattern continued when specific types of disability were considered.
It is also important to consider both race and ethnicity when analyzing disability prevalence rates. One example relates to adults who identify as Black or African American who reported the highest rates of any disability and of each disability type at one in four population members (Courtney-Long, Romano, Carroll, et al., 2017). While people of color have traditionally been under-reported in disability prevalence statistics, Black and African American children are simultaneously overly diagnosed with intellectual and developmental disabilities (Innovate Public Schools, 2019) – and often tracked into lower level courses and special education programs at disproportionate rates. For example, non-Hispanic/Latinx Black children (16.9%) were more likely than non-Hispanic/Latinx White (14.7%) or Hispanic/Latinx (11.9%) children to be diagnosed with either attention deficit hyperactivity disorder or learning disability. Yet at the same time, we see Black children are less likely to be identified as having an autism diagnosis than White children (Mandell, Wiggins, Carpenter, et al., 2009).
Patterns also emerge when considering the intersection of disability with sexual orientation. Rates of disability among people who identify as lesbian, gay or bisexual were higher than in the heterosexual population, even when age was taken into consideration. Data suggest that lesbians and bisexual women were more likely to be disabled than were gay or bisexual men. Overall, among lesbian, gay and bisexual adults, 30% of men and 36% of women reported being disabled (Fredriksen-Goldsen, Kim & Barkan, 2012).
Finally, socioeconomic status is a primary factor related to disability prevalence. Poverty rates among people with disabilities are more than twice the rate of people without disabilities and people with disabilities account for more than half of those living in long-term poverty (National Council on Disability, 2017). People with higher incomes and more years of education had lower rates of any disability – a pattern that continued within each disability type. Almost half of adults with an income of less than $15,000 and 40.0% of adults without a high school diploma had a disability compared with only 10.8% of adults with an income of over $50,000 and 11.8% of college graduates. Unemployed adults were more than twice as likely to have a disability (33.5%) as compared to people who were employed (12.6%) (Courtney-Long, Carroll & Zhang, et al., 2013).
Most recently, we have seen an increase in the number of people in the U.S. with a diagnosed disability due to the ongoing effects of COVID-19 (known colloquially as ‘long covid’), which is considered a mass disabling event, especially for people of color (Kendi, 2021). Many people will develop ‘long COVID’ after testing positive for COVID-19 and experiencing substantial limitations in at least one daily life activity (U.S. Department of Health and Human Services, 2022). This is now designated as a disability. U.S. studies suggest that between 10-30 percent who have been diagnosed with COVID-19 develop ‘long COVID’ (Government Accounting Office (GAO), 2022). This indicates that between 7.7 million and 23 million people may have developed this condition as of February 2022 (GAO, 2022).
Taken together, all of these data points tells us that disability is experienced by many communities of people in many different ways – and that disabled people are likely to have multiple social identities which can lead to the experience of intersecting oppressions, all of which are at the expense of losing privilege and facing further marginalization.
Historical Perspectives on Disability
Disability is woven into the history of the United States – and from the other western civilizations influencing the development of it – whether hidden or well-known (Stiker, 2019). The United States has a long, reprehensible history of placing constraints on disabled people instead of allowing them to live life the way they want to. At times, this has involved the development and implementation of policies and even social work practices that inhibit the lives of disabled people (Powell & Stein, 2016). In order to understand how this came to be, we need to look at history for sociocultural and political context. We acknowledge that this discussion centers European and U.S.-based contexts as these have been the primary drivers of perspectives about disability in the U.S.
If we venture back to Greek and Roman times, we know that society valued physical perfection along with intelligence leading to a very low quality of life for disabled people as objects of scorn (Stiker, 2019).Over time into the medieval period, we saw religion as having a major role in how society thought about disabled people, and acted in response to or in support of this population (Stiker, 2019). This was related to people’s fear of god, and the belief that disabled people were cursed in some way, or being punished for a sin (Stiker, 2019). These views conceptualized disabled people as subhuman, leading to the development of shelters and, for example, leper colonies (Stiker, 2019). Some people saw disabled people as ‘closer to god.’
Between 1563-1601, Queen Elizabeth in England developed and implemented the “poor laws” that obligated the state to take care of disabled people, among others (Nielson, 2013). Almshouses were created for the “aged poor” and workhouses were created for people who “refused” to work. Conditions in these places were grim (Nielson, 2013). The state’s role overlapped some with Christian beliefs about civic duty, leading to individual parishes offering some support to people who were both destitute and disabled (Stiker, 2019).
In the 1800s, we began to see the development of asylums, or institutional settings for disabled people, which represented a shift towards the medicalized understanding of disability that began in the 1700s. This shift led to the involvement of medical professionals in the care and support of disabled people. By understanding disability as a biological or physiological deficiency, society moved beyond the idea that disability was rooted in sin, for example. With disabled people now more dependent on professional care, attitudes towards this population embraced the idea of this group of people being pitiful or child-like. Unemployment was a major problem for disabled people, as it is today (Nielson, 2013).
In the late 1800s and early 1900s, the eugenics movement had a major impact on disabled people – with the idea that they were a threat to society and the well-being of nations. This movement focused on ridding the human race from all physical and mental deficiencies in order to have a more perfect society. Later, we saw this eugenic philosophy applied in Nazi Germany in the Aktion T4 program in which Hitler ordered ‘mercy killings’ of sick and disabled people deemed ‘life unworthy of life’(Stiker, 2019).
But in 1927, involuntary sterilization was supported by the Supreme Court in the Buck v. Bell decision. Carrie Buck, who was considered ‘feebleminded’ or what we now might call intellectually or developmentally disabled, was raped by a relative of her foster parents (Cohen, 2016). As a result, Carrie was involuntarily institutionalized at the Virginia State Colony for Epileptics and Feebleminded, along with her mother. Sterilization was sought for Carrie by the Colony per the state’s compulsory sterilization law. This law was upheld based on the idea that it served “the best interests of the patient and of society” with Justice Oliver Wendell Holmes, Jr. declaring, “three generations of imbeciles are enough” (Buck v. Bell, 1927). Due to state laws such as this, many disabled people, people of color, poor people, or people with all of these intersections were sterilized against their will by the 1970s (Lombardo, 2008).
Starting in the 1960s and 1970s, questions emerged in society about the care of disabled people in asylums and institutions. A series of scandals in the United States, such as the Willowbrook incident, revealed the abuse and neglect that disabled people often experienced in these settings. This led to the movements for community inclusion, self-determination, and community-based mental health and disability services. Many disabled people transitioned to life in the community, although this was not always as ideal as it might sound (Nielson, 2013).
The Medical and Social Models of Disability
There are two primary models influencing how our culture has conceptualized disability. Historically and most commonly, a has been used to understand and respond to disability (Shakespeare, 2013). In this model, disabling conditions are considered inherent to the individual and often in need of a cure or a ‘fix.’ In this way of thinking, conditions that are different from a standardized norm are individual problems that impact individual people. Therefore, the medical model centers on the identification and treatment of disabilities and considers clinicians as the experts on that condition, instead of the people with the condition. This model is also based on what disability advocates refer to as the ‘personal tragedy theory of disability’ or the idea that having a disability is a terrible thing, a tragedy, from which no good can come, something disability advocates seek to subvert (Oliver, 1990). Unfortunately, many of the financial structures that support the practice of disability social work are based on the medical model of disability in their billing practices. This makes the use of the medical model a requirement for social workers to provide services and supports and for disabled clients to receive services and supports. While some disabilities are easy to identify through the use of functional assessments (i.e. visual impairment, physical limitations requiring the use of a wheelchair), some disabilities require identification through clinical assessment tools such as diagnostic tools for mental health disorders or intelligence testing for intellectual disability, formerly referred to as mental retardation. In the United States, the medical model is also used to define disabilities via a person’s eligibility for federal and state social service programs, such as Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI).
Emerging from the United Kingdom in the 1970s (UPIAS, 1976), the social model of disability was built upon by disability scholar Michael Oliver (2013). The has a diametrically opposed vision to that of the medical model. In the social model, disability is considered an indicator of an ableist and inaccessible society, in which disability is a socially-constructed concept (Shakespeare, 2013). This model considers the ways in which society develops barriers for disabled people – and fosters a cycle of ableist oppression and able-bodied privilege. In other words, the social model suggests that the social and physical world itself is disabling, versus focusing on the body part or process that is constructed as a disability in the medical model. This model does not deny specific disabilities or the ways they impact a person, but it does challenge barriers (i.e. attitudes, physical barriers, communication challenges) that restrict access to people with all forms of human diversity, including disabilities.
Widely viewed as a political tool by the disability civil rights movement, the social model of disability counters the personal tragedy theory of disability and demands both dignity and independence for people with disabilities. Disabled people have also called for community inclusion and access to the living of everyday life – be that access to adaptive medical equipment, access to employment or physical access in the form of a ramp (McCarthy, 2003).
The social model of disability is not, however, without limitations (Owen, 2015). As noted by Shakespeare and Watson (2002) and commented upon further by disability rights activist Lydia X.Z. Brown (2018), the social model approach to disability may not adequately capture the individual’s lived experience of impairment; recognize the diversity of perspective in adopting a disability identity; or sufficiently acknowledge the experience of impairment and/or disability among multiple, intersecting identities. Despite these limitations, the social model continues to be a powerful one for the disability civil rights community – a community that is fighting for the rights of and justice for over one fourth of the U.S. population (CDC, 2021).
The models of disability are related to two areas of theory that inform the present book, ‘’ and ‘’ or ‘.’ Crip theory is helpful to draw on in practice with queer, disabled people. This theory challenges the separation of what is defined as ‘normal’ and that which is ‘abnormal’ (McRuer, 2006). Goulden & Katz Kattari (2022) note that “this phenomenon is named compulsory able-bodiedness in crip theory – the expectation that normalcy is something everyone wants to achieve” (p. 7). In many disability communities, ‘crip’ is considered to be an inclusive term that can represent all disabilities, which are broad in their diversity. ‘Crip’ is not only used to describe a disabled person (a within community word use only) but it can also be a verb, i.e. ‘cripping’ focused on revealing able-bodied assumptions as well as exclusion. Crip theory considers impairment as more than an unwelcome presence.
Disability critical race theory, known colloquially as ‘DisCrit,’ which responds to the erasure of disability and the manner in which it is connected to race (Annamma et al., 2013; Erevelles & Minear, 2010). For instance, in the context of elementary level special education, despite the fact that researchers within critical race theory share “many overlapping interests and concerns with DisCrit scholars, we see a dearth of theories and studies examining the relationship between race, ethnicity and disability” (Annamma et al., 2013, p. 1). Also, the whiteness of the field of disability studies has also been challenged by various scholars (Bell, 2017). DisCrit scholars demonstrate how Black and brown bodies are “viewed as less developed than White bodies” and considered to be more “primitive;” sometimes even considered “subspecies of human” (Annamma et al., 2013, p. 2). Further, the authors state:
We believe that students of color who have been labeled with dis/abilities live in this same complex world where they do not fit neatly into any one category. … We believe that issues of perceived dis/ability constitute issues of equity that involve all people. … We believe, for instance, that racism and ableism are normalizing processes that are interconnected and collusive. (p. 6)
Intersecting Identities, Oppression, and the Disability Experience
Building on the Crip Theory and DisCrit perspectives, we know that disabled people are an oppressed and underserved population in the United States due to their disabilities in addition to their social identities (Fredriksen Goldsen, Kim & Barkan, 2012). Living with a disability is often characterized by the experience of intersecting oppressions such as racism, homophobia, transphobia, and sexism – among other forms of oppression. Unfortunately, ableism is often a common experience among people in the disability community. , when looked at through the lens of a singular oppression, is:
the belief that because persons with disabilities are not typical of the nondisabled majority, they are inferior. Ableism precipitates devaluation, while the results of devaluation, including exclusion, ostracism” and a lack of privilege, can reinforce the attitudes, behaviors, and government actions of those who oppress. Four manifestations of oppression characterize ableism, “containment, expendability, compartmentalization and blaming the victim” (Mackelprang & Salsgiver, 2015: 105). Containment refers to the practice of limiting choices, exposure, and life experiences. Expendability refers to the idea that disabled people are unimportant or disposable. Compartmentalization refers to the stereotyping of disabled people in a way that places people in predetermined categories (Mackelprang & Salsgiver, 2015).
In a society characterized by ableism, disability intersects with all social identities as it affects people of all races, ethnicities, religions, genders, gender identities, sexualities, and socioeconomic classes (Hirschmann, 2013). Understanding the ways in which disability-related discrimination intersects with various forms of oppression is vital for social work practitioners working with disabled people, especially given the history of disability discrimination in social work – a history that has not been ‘solved’ by recent legislation (e.g. Americans with Disabilities Act of 1990). In an analysis of ableism, developed in conversation with Dustin Gibson and other colleagues, Talila Lewis (2021) has explicated the ways in which ableism and racism are connected with lasting bonds that inform one another, saying “the root of racism is ableism; and the root of ableism is anti-Blackness” (Lewis, 2021, n.p.). Addressing and solving ableism is impossible without addressing and solving racism, they argue. Lewis also points out that “ableism is also at the root of every other oppression” (Lewis, 2021, n.p.). Pulling this argument together, Lewis offers a working definition of ableism that is intersectional in nature, moving beyond the more traditional, uni-dimensional definition of ableism that is traditionally presented, such as the one we share above.
Ableism is “a system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity. These constructed ideas are deeply rooted in anti-Blackness, eugenics, misogyny, colonialism, imperialism, and capitalism. This form of systemic oppression leads to people and society determining who is valuable and worthy based on a person’s language, appearance, religion and/or their ability to satisfactorily [re]produce, excel and “behave.” You do not have to be disabled to experience ableism. (Lewis, 2021, n.p.)
In addition to ableism, is an important concept to understand for social workers. Perlin (1992) describes sanism as “as insidious as other “isms” and is, in some ways, more troubling, since it is largely invisible and largely socially acceptable… Sanism is a form of bigotry that “respectable people can express in public”’ (p. 374–5). Sanism, as developed in the work of Poole et al. (2012) and Reid and Poole (2013), specifically refers to the marginalization experiences of those who are living with mental health conditions. Sanism also refers to how people living with mental health issues have been thought of as ‘incompetent, not able to do things for themselves, constantly in need of supervision and assistance, unpredictable, violent and irrational’ (Chamberlin, cited in Poole et al., 2012: 3). In summary, Reid and Poole (2013) state that sanism subjugates people who have had mental health diagnoses or treatments. For more information on understanding sanism, Dr. Poole elaborates on this concept in a Ted talk that is freely available at this link.
Disability Culture and Identity
Understanding begins with an understanding of , because to develop a strong disability identity, one must connect with other disabled people and the disability culture. Let’s begin with a definition of disability culture (Dupré, 2012). Marilyn Dupré (2012) writes that social workers need to move beyond an assumption of the possibility of cultural competence, to an embrace of learning about disability culture.
Disability culture, the sum total of behaviors, beliefs, ways of living, and material artifacts that are unique to persons affected by disability. Particular definitions of culture take many different forms and are context-bound (dependent on the cultural and geographic context in which they are formed), but three common ways of thinking about disability culture are (1) historical, (2) social and political, and (3) personal and aesthetic. Historical definitions of disability culture focus on art, poetry, language, and social community developed by disabled people. Definitions of disability culture that blend the social and the political focus on a minority-group distinction with common values of social and economic justice, radical democracy, and self-empowerment. Notions of disability culture grounded in the personal and the aesthetic emphasize a way of living and positive identification with being disabled (Peters, 2015, n.p.).
Disability identity is a unique aspect of identity that includes identifying one’s sense of self as disabled, as well as their unique connection to the disability culture and community overall (Mackelprang & Salsgiver, 2015). Developing a strong identity as a disabled person is considered by many in the disability community to be a fundamentally important step toward long-term psychological and emotional well-being. Developing a disability identity does not happen solo, it only can occur when in relationship with others through mirroring and modeling processes with other disabled people (Mueller, Minotti & Forber-Pratt, 2020). Recognizing and supporting the development of disability identity, then, can be an absolutely essential part of working with disabled people. When designing service plans, planning for supports, and looking at disability culture community options to assist in developing disability identity in positive ways, social workers should be engaged in dialogue with their clients every step of the way. Connecting with disability culture may offer individuals the opportunity to be part of that strong community that provides support and camaraderie to its members. This is an especially important resource for social workers to know about when working with people who are isolated and without resources.
Some people also do not wish to see disability as a positive thing, nor do they wish to identify with disability as a cultural group. Even those who view disability through the social model lens tend to highlight the disabling nature of social forces and structures. While there are many disabled people who do have a strong identity as a member of the disability community, for those who do not, social workers may play a role in promoting the potential for disability to be integrated as part of one’s personal, social, cultural, and political identity/ies when using the social model lens. Disability is an identity like other social identities although it is important to know that not all want to identify as a cultural group or understand that as a possibility. There is so much variety and difference within each disability identity that does not allow us to go into detail here and this connects to intersectionality. We approach groups with a homogeneity expectation – that people will have shared experiences and expectations but there are often so many different experiences within, so this is important to watch out for and to be open to. Mueller, Minotti and Forber-Pratt (2020) comment that:
Disability identity, because it is about an individual’s own experience of their disability, is experienced in some way by everyone who has a disability. How this identity is expressed might look different based on each individual’s ideas, communication styles, and relationship to their own impairments. For example, they might participate in community by visibly seeming excited or comfortable when they go to certain disability community events. Most importantly, we think it is important that all people with disabilities are seen as part of a broader, powerful and rich disability community (n.p.).
One question to ask is does society make the claim for us or do we have a choice of social identity? Another question is how can helping clients embrace their disability identity assist them in achieving their case goals?
Central Tenets of Empowerment-Oriented Disability Social Work Practice
In this section, we discuss two sets of principles that should guide social workers’ practice with the disability community so that we are doing empowerment-oriented work. Empowerment-oriented practice, while drawing on a strengths-based approach, differs from strengths-based practice in its focus on promoting the self-efficacy of the individual or group. First, we draw on the six principles developed as part of the disability civil rights movement. We then move on to review a newer set of principles that have emanated from the which was founded in 2005 by members of the disability organization Sins Invalid. The disability justice movement centers the priorities and approaches of people who are most historically excluded, such as women, people of color, immigrants, imprisoned individuals, and LGBTQIA+ people (Berne, no date). This movement’s principles work together but are not part of one established theoretical framework.
Six central tenets can be used to guide empowerment-oriented social work practice with disabled people. The first concept, community inclusion, posits that all people have the right to be respected and appreciated as valuable members of their communities (Vaughn-Switzer, 2003). This includes, for example, a focus on helping people to participate in recreational activities in neighborhood settings as opposed to institutional settings, and to generally being part of the larger community. Second, there is the concept of circles of support. This concept honors the fact that people may have a range of friends, family or other supports in their life who can provide friendship and support. Circles of support are either formal (such as social workers, personal caregivers, occupational therapists, physical therapists, paid group home staff, etc.), informal (i.e. friends, family and neighbors) or a mix of both. Members of a person’s circle of support are often crucial to the success of any social work intervention. However, it is important for social workers to honor that the client at the center of the circles of support has the right to direct their care – including how they want their circles of support to be included in that process – or not! Circles of support are not “responsible for” disabled individuals, nor are they caring for them, but rather they are looking out for the person and protecting their interest. This concept recognizes that humans don’t exist in isolation, rather, they function in an interconnected manner.
The third tenet is linked to the phrase “nothing about us without us.” This phrase became the rallying cry of the disability civil rights movement adopted in the 1990s (Owen, 2014). This phrase is said to derive from Latin, nihil de nobis sine nobis, later used in “Polish foreign policy in the 1930s to communicate the idea that no policy should be decided by any representative without the full and direct participation of those whom the policy affected” (Owen, 2014, p. 7). More recently, disability civil rights advocates have reframed this saying to read “about us, by us” (Disability Policy Consortium, 2020). Fourth, there is the concept of self-determination. This is conceptualized as the process of making something happen in one’s own life. It is the opportunity to make choices, set goals, solve problems and make a range of decisions for oneself. Fifth is the idea of interdependence, or the notion that we are not and do not need to be as independent as we think we are in this society, we are actually much more interdependent than we realize (Lightfoot & LaLiberte, 2011), and this should be recognized and honored. Interdependence honors the goal of working to meet each other’s needs without always reaching for state solutions (Sins Invalids, 2021).
The sixth tenet, the dignity of risk, is perhaps the most controversial and challenging of all of the tenets. This is the idea that everyone can learn from everyday risks. Central to honoring the dignity of risk is respecting an individual’s autonomy and self-determination to make choices. Also important is the right to make choices even if social workers or other professionals in the person’s life feel that they could endanger the decision-maker in question. In order to respect a person’s dignity of risk, one should provide intermittent support even if others do not approve of the unsafe choice. As there is inherent dignity in the experience of everyday risk, this concept suggests that limiting a disabled person’s ability to make a risky choice, or limiting their access to the community does not foster overall wellness in the long run. Robert Perske (1972) famously writes that:
Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of their dignity. Overprotection can keep people from becoming all they could become. Many of our best achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again. Sometimes we made it and sometimes we did not. Even so, we were given the chance to try. Persons with special needs need these chances, too. Of course, we are talking about prudent risks. People should not be expected to blindly face challenges that, without a doubt, will explode in their faces. Knowing which chances are prudent and which are not — this is a new skill that needs to be acquired. On the other hand, a risk is really only [a risk] when it is not known beforehand whether a person can succeed. The real world is not always safe, secure, and predictable, it does not always say “please,” “excuse me,” or “I’m sorry.” Every day we face the possibility of being thrown into situations where we will have to risk everything…In the past, we found clever ways to build avoidance of risk into the lives of persons living with disabilities. Now we must work equally hard to help find the proper amount of risk these people have the right to take. We have learned that there can be healthy development in risk taking and there can be crippling indignity in safety. (p. 196)
Arguably, the dignity of risk may be the most challenging of the tenets for social workers to embrace in their practice with clients, but it is a vital one to work toward given its intersection with self-determination. Taken together these central tenets of disability social work will inform your practice and improve your ability to do empowerment-oriented work with the disability community.
These six central tenets of empowerment-oriented social work practice with the disability community work well with the ten principles set out by a group of disability activists working with disability the culture organization Sins Invalids. These principles are outlined below. Further detail can be found at the organization’s website (Berne, no date).
Intersectionality refers to the idea that each person has different social identities that intersect in different ways, and they all impact us in a unique manner
Leadership of the most impacted calls on us to move beyond academics and other experts to listening to the people most impacted by ableism, etc. This allows us to be grounded in the real world.
Anti-capitalist politics reference the fact that a focus on accumulating wealth encourages competition as a way to survive. This harms disabled people who may not be seen as productive in the dominant-society sense. This lifts up the idea that worthiness is not dependent on productivity.
Cross-movement solidarity argues that the disability justice movement can only grow in connection to, alignment with and support for other movements, such as queer and trans liberation, racial justice and gender justice.
Recognizing wholeness honors that each disabled person is a whole person with their own history and life experience.
Sustainability focuses on maintaining well-being in the long term through listening to our bodies and experiences as a critical guide towards liberation and justice.
Commitment to cross-disability solidarity relates to the need for all disabled people and communities to work together, especially those often left out of political conversations or who may be isolated.
Interdependence moves us beyond western society’s lifting up of the concept of independence alone. This relates to the liberation of all living systems, including the environment. Also, this means focusing on self/community support as opposed to state solutions where we can.
Collective access embraces the idea that access needs are not to be ashamed of, can be shared in community, can be met without one’s integrity being compromised and with autonomy balanced.
Collective liberation means that no body-mind is left behind, and honors people of all social identities within the disability communities.
Questions to ask yourself after reading about these central tenets and principles include, how am I already using these principles in my practice? In what areas can I improve the use of these principles? In what areas am I not using some of these principles at all? Let these central tenets and principles guide you as you read the rest of this textbook on social work practice with the disability community.
In summary, this chapter explores disability definitions, identity, history, and culture. It is important to understand how disability has been and is framed by society through medical, social, political, and cultural lenses. Using this first chapter as a foundation, we now move to the next chapter which focuses on theoretical and practice guidance for empowerment-oriented social work with disability communities.
Americans with Disabilities Act, 42 U.S.C. § 12101 et seq. (1990)
Annamma, S., Connor, D., & Ferri, B. (2013). Dis/ability critical race studies (DisCrit): Theorizing at the intersections of race and dis/ability. Race, Ethnicity and Education, 16(1), 1–31. doi:10.1080/13613324.2012.730511
Arielle, Z. (2019). “This Is What Disabled Looks Like”: The Sometimes Hard-To-See Line Between Visible and Invisible Disabilities. Medium. https://medium.com/@coffeespoonie/the-sometimes-hard-to-see-line-between-visible-and-invisible-disabilities-this-is-what-disabled-eb6dec41bdf6
Berne, P. (no date). 10 Principles of Disability Justice. https://static1.squarespace.com/static/5bed3674f8370ad8c02efd9a/t/606e264c8c838d062a7b0fbb/1617831500521/10+PRINCIPLES+OF+DISABILITY+JUSTICE+-+Plain+Text.pdf
Brown, L. X. Z. (2018). The neurodiversity movement needs its shoes off, and fists up. Autistic Hoya.
Cameron, C. (2014). Chapter 44 Social model. In C. Cameron (Ed.), Disability studies: A student’s guide (pp. 137-140). SAGE Publications.
Castañeda, C., Hopkins, L.E., & Peters, M.L. (2013). Ableism: Introduction. In M. Adams, W.J. Blumenfeld, C. Castañeda, H.W. Hackman, M.L. Peters, & X. Zúñiga (Eds.), Readings for diversity and social justice (3rd ed., pp. 461-468). Routledge.
Centers for Disease Control and Prevention (2021). Disability Prevalence. https://www.cdc.gov/ncbddd/disabilityandhealth/infographic-disability-impacts-all.html
Chamberlin, J. (2005). User/consumer involvement in mental health service delivery.
Epidemiologia e Psichiatria Sociale, 14(1), 10–14.
Cohen, A. S. (2016). Imbeciles: The Supreme Court, American eugenics, and the sterilization of Carrie Buck. New York, NY: Penguin.
Courtney-Long, E.A., Romano, S.D., Carroll, D.D. et al. (2017). Socioeconomic Factors at the Intersection of Race and Ethnicity Influencing Health Risks for People with Disabilities. Journal of Racial and Ethnic Health Disparities. 4: 213.
Courtney-Long E., Carroll D., Zhang Q., et al. (2013) Prevalence of Disability and Disability Type among Adults, United States – 2013. MMWR Morbidity and Mortality Weekly. Report 2015; 64: 777-783.
Disability Policy Consortium. (2020). About us, by us. https://www.dpcma.org/dpc-publication-about-us-by-us
Dupré, M. (2012). Disability culture and cultural competency in social work. Social Work Education, 31(2), 168-183.
Erevelles, N., & Minear, A. (2010). Unspeakable offenses: Untangling race and disability in discourses of Intersectionality. Journal of Literary and Cultural Disability Studies, 4(2), 127–145. doi:10.3828/jlcds.2010.11
Finklestein, V. (2001) A personal journey into disability politics. Available online at http://www.independentliving.org/docs3/finkelstein01a.pdf (accessed 16 December 2011).
Fredricksen-Goldsen, K., Kim, H. & Barkan, S. (2012) Disability among lesbian, gay and bisexual adults: Disparities in prevalence and risk. American Journal of Public Health. 102(1): e16-e21.
Ghosh, S., Dababnah, S., Parish, S.L. & Igdalsky, L. (2015). Disability, social exclusion and Poverty. In Iriarte, E.G., McConkey, R., Gilligan, R. (Eds.), (2015) Disability in a global age: A human rights based approach, Palgrave Macmillan.
Goulden, A. & Katz Kattari, S. (2022). Chapter 8: Sexual orientation, sexuality and disability. In Eds. Slayter, E. & Johnson, L. (2022) Social work practice and the disability community: An intersectional anti-oppressive approach. Open Social Work Education.
Government Accounting Office (GAO). Long COVID. https://www.gao.gov/products/gao-22-105666
Hirschmann, N. (2013). Disability, feminism and intersectionality: A critical approach. Radical Philosophy Review. 16(2): 649-662.
Innovate Public Schools. (2019). Are students of color over-identified or under-identified as having a disability? The answer is both.
Kraus, L., Lauer, E., Coleman, R., and Houtenville, A. (2018). 2017 Disability Statistics Annual Report. Durham, NH: University of New Hampshire.https://disabilitycompendium.org/sites/default/files/user-uploads/2017_AnnualReport_2017_FINAL.pdf
Lewis, T. (2021). January 2021 Working definition of ableism. https://www.talilalewis.com/blog/january-2021-working-definition-of-ableism
Lightfoot, E. and LaLiberte, T. (2011). Parental supports for parents with intellectual and developmental disabilities. Intellectual and Developmental Disabilities. 49(5): 1-7.
Lombardo, P. A. (2008). Three generations, no imbeciles: Eugenics, the Supreme Court, and Buck v. Bell.Baltimore, MD: Johns Hopkins University Press.
Longmore, P. (2003) Why I Burned My Book and Other Essays on Disability. Philadelphia: Temple University Press.
Longmore, P. and Umansky, L. (2001). The new disability history: American perspectives. New York: New York University Press.
Mackelprang, R. and Salsgiver, R. (2015). Disability: A diversity model approach in human services practice, third edition. Chicago: Lyceum Books, Inc.
Mandell, D., Wiggins, L., Carpenter, L., et al. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health. 99(3): 493-498.
McCarthy, H. (2003). The disability rights movement: Experiences and perspectives of selected leaders in the disability community. Rehabilitation Counseling Bulletin, 46(4), 209-224.
McRuer, R. (2006). Crip theory: Cultural signs of queerness and disability. New York: New York University Press.
Mueller, C., Minotti, B., and Forber-Pratt, A. (2020) What is disability identity development and why is that important? https://www.tennesseeworks.org/what-is-disability-identity-development-and-why-is-that-important/
National Association of the Deaf (2019). Community and culture – frequently asked questions. https://www.nad.org/resources/american-sign-language/community-and-culture-frequently-asked-questions/
National Council on Disability (NCD) (2017). Highlighting Disability / Poverty Connection, NCD Urges Congress to Alter Federal Policies that Disadvantage People with Disabilities https://ncd.gov/newsroom/2017/disability-poverty-connection-2017-progress-report-release#:~:text=People%20with%20disabilities%20live%20in,living%20in%20long%2Dterm%20poverty
Nielson, K. (2013). A disability history of the United States. Beacon Press.
Oliver, M. (1990). The individual and social models of disability. Joint workshop of the living options group and the Research unit of the Royal College of Physicians on People with Established Locomotor Disabilities in Hospitals. July 23, 1990.
Owens, J (2015). Exploring the critiques of the social model of disability: The transformative possibility of Arendt’s notion of power. Sociology of Health and Illness. https://doi.org/10.1111/1467-9566.12199
Padden, C. and Humphries, T. (1988). Deaf in America: Voices from a culture. Harvard University Press.
Perlin, M. L. (1992). On “sanism.” Southern Methodist University Law Review, 46, 373–407.
Perske, R. (1972). The dignity of risk. In Wolfensberger, W. (Ed.), The Principle of Normalization in Human Services. Toronto: National Institute on Mental Retardation.
People with Disabilities Australia, (2016). The social model of disability. Retrieved on July 3, 2016 from: http://www.pwd.org.au/student-section/the-social-model-of-disability.html
Peters, Susan J.. “Disability culture”. Encyclopedia Britannica, 21 Dec. 2015, https://www.britannica.com/topic/disability-culture. Accessed 19 May 2021.
Poole, J., Jivrav, T. Arslanian, A., et al. (2012). Sanism, ‘mental health’ and social work/education: A review and call to action. Intersectionalities: A global journal of social work analysis, research, polity and practice. 1:20-36.
Powell, R. M., & Stein, M. A. (2016). Persons with disabilities and their sexual, reproductive, and parenting rights: an international and comparative analysis. Frontiers of Law in China, 11(1), 53-85.
Shakespeare, T. (2013). The social model of disability. In Ed., Davis, L. (2013). The Disability Studies Reader, Fourth Edition. New York: Routledge.
Shakespeare, T. and Watson, N. (2002). The social model of disability: An outdated ideology? Research in Social Science and Disability 2:9-28.
Smith, S. R. (2010) Social justice and disability: competing interpretations of the medical and social models. In K. Kristiansen, S. Vehmas and T Shakespeare. (eds) Arguing About Disability: Philosophical Perspectives. Oxford and New York: Routledge.
Stiker, H. (2019). A history of disability. University of Michigan Press.
The Vision Council. (2017). U.S. optical industry report card (December 2016). Retrieved from https://thevisioncouncil.org/sites/default/files/research/TVC%20VW%20Report%20Card%20Q4’16%20BL.pdf
Varadaraj, V., Deal, J., Campanile, J., Reed, N., & Swenor, B. (2019). National prevalence of disability and disability types among adults in the US, 2019. JAMA Network Open. 4(10).
Vaughn Switzer, J. (2003). Disabled rights: American disability policy and the fight for equality. Washington DC: Georgetown University Press.
Waldrop J. & Stern S. In Disability status 2000: Census 2000 brief, Eds. Washington, DC: US Department of Commerce, US Census Bureau, 2003. 1-12.
Wendell, S. (2013). The social construction of disability. In M. Adams, W.J. Blumenfeld, C. Castañeda, H.W. Hackman, M.L. Peters, & X. Zúñiga (Eds.), Readings for diversity and social justice (3rd ed., pp. 481-485). Routledge.
Zablotsky, B and Alford, JM. (2020). Racial and ethnic differences in the prevalence of attention-deficit/hyperactivity disorder and learning disabilities among U.S. children aged 3–17 years. NCHS Data Brief, no 358. Hyattsville, MD: National Center for Health Statistics.
Zola, I. (1993). Disability Statistics, What We Count and What It Tells Us: A Personal and Political Analysis. Journal of Disability Policy Studies. 4(2), 9-39.
When thinking about how to define disability, it is helpful to make a distinction between a person’s impairment and a person’s disability. Impairment is a physiological condition that can lead to disability while disability is a result of people living with impairments when there are physical, attitudinal, communication, social, or other barriers in the environment
A social construction is an idea that has been created and embraced by people in society.
Impairment is a physiological condition that can lead to disability
people who do not have disabilities may become disabled by illness, the process of growing older, accidents, and war,
Disabilities that are not immediately apparent as someone views a person.
Using a term such as "a person with Autism" as opposed to "Autistic person."
Language that honors the disability, and someone's pride in being part of disability culture, such as "Autistic person."
In this model, disabling conditions are considered inherent to the individual and often in need of a cure or a ‘fix.’ In this way of thinking, conditions that are different from a standardized norm are individual problems that impact individual people. Therefore, the medical model centers on the identification and treatment of disabilities and considers clinicians as the experts on that condition, instead of the people with the condition.
The social model of disability has a diametrically opposed vision to that of the medical model. In the social model, disability is considered an indicator of an ableist and inaccessible society, in which disability is a socially-constructed concept (Shakespeare, 2013). This model considers the ways in which society develops barriers for disabled people – and fosters a cycle of ableist oppression and able-bodied privilege. In other words, the social model suggests that the social and physical world itself is disabling, versus focusing on the body part or process that is constructed as a disability in the medical model.
This theory challenges the separation of what is defined as ‘normal’ and that which is ‘abnormal.' This phenomenon is named compulsory able-bodiedness in crip theory - the expectation that normalcy is something everyone wants to achieve.
This theory responds to the erasure of disability in society and the manner in which it is connected to or intersected with race.
This is a shorthand term for 'Disability Critical Race Theory'
There are varying definitions of ableism, which relates to the oppression of disabled people in society.
This refers to the marginalization experiences of those who are living with mental health conditions.
This is a unique aspect of identity that includes identifying one’s sense of self as disabled, as well as their unique connection to the disability culture and community overall.
This is the sum total of behaviors, beliefs, ways of living, and material artifacts that are unique to persons affected by disability.
The disability justice movement centers the priorities and approaches of disabled people who are most historically excluded, such as women, people of color, immigrants, imprisoned individuals, and LGBTQIA+ people.