Disability: Physical Disabilities
- Mary Ann CluteMary Ann CluteEastern Washington University
Physical disability is traditionally defined by society's view of atypical function. The medical model offers information on factors contributing to physical disability, including genetics, injury, and disease. The social model of disability, however, defines the societal responses, not the physical differences, as disabling. People with physical disabilities have unique characteristics and experiences that fall into the broad range of human diversity. They belong as full participants in society. Social workers must focus on working in respectful partnerships with people with physical disabilities to change environments and attitudes. This will help build a just society that honors diversity.
This entry addresses multiple factors that cause disability, from genetics to environment, as viewed through the medical model. The social model view of “the problem” is offered in comparison. It also introduces the wide diversity of people with physical disability. The entry discusses two major societal responses to physical disability. Environmental modification is one approach. A more recent approach, Universal Access, involves upfront design of environments to meet diverse needs. The final sections explain implications for social workers and lays groundwork for action. Creating access and respectful partnerships are foundations of the work ahead.
It is difficult to define physical disability without situating the discussion in the model used to view and deal with human diversity. This discussion is based on the social model of disability, a view of disability that sees the environment as disabling, not the individual condition. Discussion of the medical model is offered as a contrast. (For a more complete discussion of disability models, see Mackelprang's Disability: An Overview in this publication.)
Knowledge of physical disability is required for competent social work practice in a diverse world. There are contrasting definitions based on medical and social models (Mackelprang & Salsgiver, 1999). Using the medical or deficit model, impairment is defined as an atypicality of body parts or function. Examples include arthritis, missing limbs, lung or heart disease. Physical disability is determined by the actual impact of those conditions on function. The condition must be severe enough to limit physical activity before it can be considered a disability. Conversely, from the social model, an impairment is viewed as a social construction (Overall, 2006; Tremain, 2001). Society creates the meaning of the condition, which may change over time, and vary from one culture to another. Currently, society differentiates atypical from typical function. Differences are noted and labeled. Judgments often follow (Depoy & Gilson, 2004; Reeve, 2002). The social model of disability proposes that it is the societal response that disables a person with diverse characteristics.
Causes of Physical Difference
From the medical model, typical development is viewed as the norm (Depoy & Gilson, 2004). Atypical development is pathological. Causes, cures, and prevention are key elements in the medical model (Jakubowicz & Meekosha, 2002). Those who use the medical model are concerned with the causes of physical disabilities. Science helps explain the causes of physical difference. These causes include genetic or chromosomal alterations, environmental events or exposures, physical trauma throughout the life span, and disease processes (Conover, 1994; Giavini & Menegola, 2004; Graziano, 2002; Mackelprang, n.d.; Penchaszadeh, 2002; Seaver, 2002).
A variety of prenatal factors are linked to disability. Genetic or chromosomal causes of disability may be due to hereditary conditions, for example, cystic fibrosis. Spontaneous chromosomal changes can result in conditions such as Prader Willi (Graziano, 2002; Wattendorf & Muenke, 2005). Factors that interfere with typical fetal development are called teratogens.
As many as 60,000 substances have been linked to alterations in fetal development (Giavini & Menegola, 2004). In addition, iodine and folic acid deficiencies have been tied respectively to growth problems and neural tube (brain and spinal column) atypicalities (Penchaszadeh, 2002). Also, maternal use of prescription and nonprescription medications can lead to alterations in fetal development. Disease during pregnancy is another trigger for alteration of fetal development. Maternal or infant viral exposure put the fetus at risk. The pregnant mother's external environment also can affect the fetus. Exposure to radiation can cause physical damage to the fetus (Graziano, 2002; Ursprung, Howe, Yochum, & Kettner, 2006). Lead, solvents, and pesticides are just a few examples of other environmental toxins (Conover, 1994).
In the United States, 85% of disabled persons acquire their disabilities after birth (Shapiro, 1994). Adult onset diseases can lead to physical disability in adults. Poorly controlled diabetes may result in limb amputation. Cancer may reduce functionality of organs, blood, and bones. The pain and stiffness of rheumatoid arthritis may lead to physical disability. HIV and AIDS as well as Alzheimer's disease can follow pathways of progressive physical deterioration. Trauma or injury may also cause disabilities throughout the life span. During the birth process, injuries to the fetus can be sustained. At any age, limbs may sustain damage directly, or an injury to the brain or spinal cord can manifest in paralysis and other limitations in physical functioning.
Physical disability may be a temporary state for some. Sprains and fractures are ready examples. Rehabilitation can promote recovery from injuries and medical incidents such as strokes (Stucki, Stier-Jarmer, Grill, & Melvin, 2005). Conversely, genetic conditions have lifelong effects. Age-related disabilities may affect the individual throughout the remainder of the life course. Aging may be accompanied by the development of disability, although healthy aging is becoming more prevalent (NIH, 2007). Health conditions such as osteoporosis, stroke, heart disease, emphysema, and chronic obstructive pulmonary disease can become more prevalent with age. Arthritis is the most prevalent cause of disability in the United States. Eighty-five percent of those with arthritis are older than 45 years (AOA, 2007). Advanced age may also be accompanied by hearing, vision, or tactile sensitivity losses (Zastrow & Kirst-Ashman, 2007), which add more challenges to completing tasks of daily living.
Persons with Physical Disabilities
What are the characteristics of a person with a physical disability? People with physical disabilities are first and foremost, people. Their physical difference may be visible, as evidenced by a missing limb, atypical gait, or use of a wheelchair. It is very possible for a disability to be invisible, as in some phases of heart or respiratory conditions, multiple sclerosis, rheumatoid arthritis, or muscular dystrophy. It is important to note that a number of physical disabilities simply involve physical differences, such as an absent limb. In some cases, however, the physical disability may be accompanied by other disabilities. For instance, a head injury from a motorcycle accident can result in physical, psychological, sensory, and cognitive disabilities.
People with disabilities have historically been viewed as needing to be fixed or cured (Mackelprang & Salsgiver, 1999). Those who need help with tasks of daily living, such as eating, dressing, and toileting, were seen as abnormal. Some people with physical disabilities were met with fear and discomfort, as well as treated as objects of charity (Depoy & Gilson, 2004). In the past, care in institutions or nursing facilities were often seen as the only alternatives. Living independently, attending school (especially higher education), claiming sexuality, having families and jobs were not viewed as realistic goals. It is well supported in the literature (for example, Depoy & Gilson, 2004; Mackelprang & Salsgiver, 1999) that these reactions are tied to the stigma associated with disability.
The Independent Living movement, which emerged in the 1960s, began to challenge these assumptions (Mackelprang & Salsgiver, 1999). With accessible housing, schools, transportation, and businesses, and often the help from attendants, all people can live in the community. Social roles, from parent to professional, can be successfully fulfilled with adequate support and opportunity. The social environment plays a large role in the extent to which physical difference will affect an individual's life and life span. How persons with physical disabilities view themselves is as diverse as the human experience. Social experiences with family, neighborhood, and school make a difference (Antle, 2004; Moore, 1998).
The civil rights movements of the 1960s fueled disability rights protests and demands for access. Finally, in 1990, The Americans with Disabilities Act (ADA) affirmed the existing inequities for citizens with disabilities (Mackelprang & Salsgiver, 1999). Yet barriers still exist. Lack of financial resources continue to limit access to full participation in society. Payment is needed for qualified attendants or technology to increase access. Poverty is associated with causes of disability as well as the consequences of disability (Lustig & Strauser, 2007). Not all people with physical disabilities are poor (Depoy & Gilson, 2004). Those with financial resources have somewhat different experiences than those without, such as increased access to qualified attendants and technology. Also, persons with coexisting disability, along with racial, ethnic, gender, and sexual identities, face further complexities in defining themselves and taking action (Mpofu & Harley, 2006; Robinson, 1999).
Researchers are asking questions about who people with disabilities feel connected to, and how persons with disabilities define themselves (Depoy & Gilson, 2004; Putnam, 2005). Personal and social identities (culture) for people with physical disabilities are being explored (Beart, Hardy, & Buchan, 2005). One strand of literature includes discussion of financial, governmental, and environmental discrimination. This can impede full participation in society and contribute to internalized oppression (Galvin, 2005; Reeve, 2002). Yet high self-esteem and positive outlooks for persons with disabilities are reported despite negative social experiences (Putnam, 2005). Many report that they would not change their circumstances (Hahn & Belt, 2004).
Existence of a shared culture that honors each individual would offer a community of support for action (Depoy & Gilson, 2004). But disability cultural identity is not a clear or universally accepted concept (Depoy & Gilson; Mackelprang & Salsgiver, 2007).
The social model of disability offers a framework for changing the environment and bolstering positive identities, rather than internalizing oppression. Social constructions are created; therefore they can be recreated in ways that honor diversity (Galvin, 2005). Social workers have an important role in working with persons with disabilities to challenge current social constructions about disability and work in partnerships to create a new view of disability as a form of diversity.
From Environmental Modification to Universal Access
Western society has generally responded environmentally to disability in one of two ways. Following the ADA in 1990, efforts have been made to modify existing environments to accommodate physical disability. “Reasonable accommodation” (http://www.usdoj.gov/crt/ada/q%26aeng02.htm) provides access by remodeling physical space or providing equipment. The equipment, called Assistive Technology, allows access to an activity or service. This technology ranges from items such as sponge pencil grips and mechanical reachers to computerized programs that run a household. The United Nations, as well as individual countries such as Canada, United Kingdom, Australia, Spain, Holland, and Sweden, have implemented laws and policies to address accessibility for those with disabilities (Sandhu, 2000).
A second approach, Universal Access, offers a proactive approach. Universal Access involves “upfront” design that makes environments and services accessible to all. A major component is Universal Design (UD) that began as an architectural concept (http://www.design.ncsu.edu/cud/about_udprinciples.htm). Ideally, buildings are constructed and businesses and services are designed around these principles. UD involves initial inclusion of items such as automatic doors, curb cuts, levered door handles, wider doors, and adequate space to accommodate adaptive equipment, such as wheelchairs. UD benefits students juggling books, parents with strollers, as well as grocery shoppers with carts or bags of purchases. All society profits from UD which offers a framework for designing more inclusive communities throughout the world (Sandhu, 2000). Environments created with UD principles require fewer modifications for individual needs.
Universal Access is not just about making physical alterations, but also encompasses designing activities that encourage the participation of as many people as possible (http://homepage.eircom.net/~tippcil/universal_access.htm.) Universal Instructional Design (UID) or Universal Learning Design (ULD) has been receiving greater attention in the literature (Curry, 2003; Hackman & Rauscher, 2004; Johnson, 2004; Lightfoot & Gibson, 2005; Mino, 2004; Oulett, 2004; Pliner & Johnson, 2004; Scott, McGuire, & Shaw, 2003). UID or UDL principles are often built on UD principles and usually incorporate three core principles from the Center for Applied Special Technology: multiples means of representation, multiple means of expression, and multiple means of engagement (http://www.cast.org/about/index.html). These principles are vital in social justice education which examines power imbalances present in oppression (Hackman & Rauscher, 2004) and social work education (Lightfoot & Gibson, 2005).
Social Work and Universal Access
Universal Access principles provide guidelines for social workers to meet the needs of a diverse society. These principles can be used to work with colleagues with physical disabilities, clients who use English as their second language, adults with learning disabilities, or older adults with low vision. Social workers can apply Universal Access principles before scheduling community meetings, or developing individual client activities.
Applying principles of UID (Alschuler & Mackelprang, n.d.; Curry, 2003; Hackman & Rauscher, 2004; Johnson, 2004; Lightfoot & Gibson, 2005; Mino, 2004; Oulett, 2004; Piner & Johnson, 2004; Scott, McGuire, & Shaw, 2003) to social work practice improves access to policy development, research, and direct service. Descriptions of Scott, McGuire, and Shaw's nine principles of UID are adapted below for social work use. (a) To meet the needs of a diverse population, select locations that are served by public transportation, with accessible entrance, intake or counseling area. Provide clear signage and pictorial signage. Work or meeting spaces should be physically accessible. (b) Honor diverse learning styles by providing activity-based and/or group-based activities. (c) Offer clear, jargon-free descriptions/depictions of expectations of participation. (d) Provide information before, during, and after the session or meeting in a variety of formats so that the information is perceptible to as many as possible. (e) To encourage success of all, give individuals early and ongoing feedback about their participation. Welcome unique outcomes. Use materials that the client or participant can be most successful completing, such as materials with diagrams or pictures in addition to written instructions. (f) Design required paperwork to be done as efficiently as possible. For example, post required forms online. Provide a variety of means to demonstrate or share expertise, such as having participants act or draw out their suggestions. (g) Arrange space that will welcome those with sensory disabilities, as well as sufficient room for those using assistive devices. (h) Build connections. Get to know participants or clients as unique persons. Develop ways to share their expertise and gifts with others. (i) To build feelings of safety and acceptance, use materials that depict diversity and convey respect. Respectful language is imperative, such as “Ms. Smith is a wheelchair user or rider” as opposed to “Ms. Smith is confined to a wheelchair” (Mackelprang, n.d.). Finally, the social worker must always anticipate and be ready to make additional individual adjustments based on specific needs, such as interpreters, special equipment, attendants, and any necessary Assistive Technology. Universal Access principles help social workers create a respectful environment for colleagues, community members, as well as clients.
Beyond creating access, social workers must understand societal and individual responses to disability. In the National Association of Social Work's Code of Ethics, Standard 1.05 Cultural Competence and Social Diversity states: “(c) Social workers should obtain education about and seek to understand the nature of social diversity and oppression with respect to race, ethnicity, national origin, color, sex, sexual orientation, age, marital status, political belief, religion, and mental or physical disability” (http://www.socialworkers.org/pubs/code/code.asp). Social workers must acknowledge the identities, cultures, experiences, insights, and goals of all persons, including persons with physical disabilities. Social workers must be comfortable with persons who speak, move, and listen in nontypical ways. Neighbors, colleagues, and business associates, as well as consumers may have physical disabilities. Social workers must respect the self-knowledge, strengths, and capabilities of all people, including people with disabilities (Beaulaurier & Taylor, 2001; Gilson, Bricout, & Baskind, 1998). In order to form partnerships with individuals having disabilities, social workers must listen respectfully. They should see these individuals as possessing unique as well as common needs (Gilson et al. 1998).
Barriers to access, ranging from the financial cost of necessary equipment to social stigma, remain at the core of the disability experience for many (Mackelprang & Salsgiver, 1999). Complexities of overlapping identities such as race, gender, and sexual orientation, as well as disability must be acknowledged (Robinson, 1999).
Global aging is occurring, with global projections for 700 million citizens over age 65 by 2020 (Ramurti, 2000). Incidence of disability may increase with age (Zastrow & Kirst-Ashman, 2007). War-related injuries continue, affecting children and adults (Giorlami, Foex, & Little, 1999). War-related disability has severe impact on small countries engaged in civil war (Giorlami et al., 1999). Technology is improving to increase physical and information access, but dissemination of information and funding continue to be obstacles (Sandhu, 2000).
Physical disability traditionally represents society's view of functional limitations. Use of the medical model offers descriptions of the many factors that contribute to physical disability. Rather than viewing these individuals with these physical differences as “disabled,” the social model of disability focuses on the environment as disabling. Many societies are recognizing that people with physical disabilities have diverse characteristics and experiences that fall into the broad range of human diversity. They belong as full participants in society. Literature is emerging on the concepts of disability identity and disability cultural identity. Social workers can help in developing respectful partnerships with people having physical disabilities to change environments and attitudes. This will help build a society that honors diversity.
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