Role of Educator and Language Disabilities as Barrier In Nursing Education
The Language of Disabilities in Nursing Education
Since the 1960s, the disability rights movement has worked to improve the quality of life of people with disabilities through political action. Through this effort, tremendous gains have been realized, including improved access to public areas, education, and employment. The disability rights movement also advocates for appropriate use of language with respect to people with disabilities.
In the late 1970s, disability advocates began to encourage the use of “people first or person first language” (Family to Family Network, 2016: Haller, Dorries, & Rahn, 2006). The term people first language refers to the practice of putting “the person first before the disability” in writing and speech and “describing what a person has, not what a person is.”
People first language is based on the premise that language is powerful and that referring to an individual in terms of his or her diagnosis or disability devalues the individual (Snow, 2012, p. 3). Resulting from this effort, the federal government uses people-first language in its legislation and many professional journals require authors to use it in their manuscripts.
Consider the following statements: Justin, a 5-year-old asthmatic, has not responded well to treatment. Developmentally disabled people, like Marcy, do best when provided with careful direction. In each of these statements, the emphasis is on the disability rather than the person. Using people-first language, these statements would be reworded as follows:
Justin is a 5-year-old boy who is diagnosed with asthma. Justin continues to have symptoms despite treatment.
Marcy is a woman with a developmental disability. Marcy wants to learn how to care for herself and she learns best when given careful direction.
In recent years, the use of people-first language has become somewhat controversial. Some groups within the disabilities movement argue that a disability is an integral part of who a person is and should be affirmed rather than listed as a secondary characteristic (Dunn & Andrews, 2015). These individuals prefer the use of “identity first language,” which places the disability related word first when describing a person with a disability.
For example, when using identity first language, a person would be referred to as autistic rather than a person with autism. Advocates of identity first language believe that a disability is an all pervasive “edifying and meaningful component of a person's identity that defines the way in which an individual experiences and understands the world around him” (Brown, 2011, para. 11).
Therefore, these advocates believe that identity-first language celebrates rather than apologizes for the disability and serves to unite people with a disability. No definitive rules exist for governing the use of language about disabilities. However, language is powerful so it is important that nurses proceed carefully when writing about, talking about. or talking to people with disabilities.
The words and labels nurses use to describe people influence the way individuals think about themselves and the way individuals are perceived by society.
The following guidelines should be considered:
When working with or writing about groups with a specific disability, try to determine preference. The literature, advocacy groups, and websites are good sources of information about group preference. Do not confuse disability with illness. Cancer is a disease.
Children with leukemia are more appropriately referred to as children with leukemia than leukemics. Autism is a lifelong condition that defines the way people affected view the world. Many people with autism prefer the term “autistic” as they believe it defines who they are and the way they view the world.
Unless a preference is accepted by an entire group, avoid using one format exclusively (Dunn & Andrews, 2015). Don't make assumptions.
Snow (2012) offers these additional suggestions for using disability sensitive language:
Use the phrase congenital disability rather than the term birth defect. The term birth defect implies that a person is defective.
Avoid using the terms handicapped, wheelchair bound, invalid, mentally retarded, special needs, and other labels that have negative connotations, Speak of the needs of people with disabilities rather than their problems. For example, an individual does not have a hearing problem but rather needs a hearing aid.
Avoid phrases such as suffers from or victim of Phrases like these evoke unnecessary and unwanted pity. When comparing people with disabilities to people without disabilities, avoid using phrases such as normal or able bodied. Phrases such as these place the individual with a disability in a negative light.
The Roles and Responsibilities of Nurse Educators
The role of the nurse in teaching persons who have a disability continues to evolve as, more than ever, patients and their families expect and are expected to assume greater responsibility as self-care agents. Here, the focus is on wellness and strengths not limitations of the individual. The role of the nurse educator in working with people who have a disability is varied and situation dependent.
The nurse may encounter patients who are newly disabled because of injury or illness or who have an illness that affects an existing disability. The nurse may also work with patients whose health or illness needs are related to their disability only insofar as the disability influences the way in which they learn or respond to treatment.
For example, the nurse may teach self-care skills to a client with a new spinal cord injury, teach modification of self care skills following orthopedic surgery to a client with an old spinal cord injury, or adapt a teaching plan for a client who is blind and newly diagnosed with diabetes.
It is the role of the nurse to teach these individuals the necessary skills required to maintain or restore health and maintain independence (habilitation) and to relearn or restore skills lost through illness or injury (rehabilitation). When people with disabilities are encountered in health and illness settings, nurses are responsible for adapting their teaching strategies to help them learn about health, illness, treatment, and care.
When teaching patients who have a disability, the nurse must assess the degree to which families can and should be involved. Families of individuals who have a new disability are becoming increasingly involved in the individual's care and rehabilitation efforts.
However, when working with someone who has an existing disability, the appropriateness of involving family must be assessed carefully. The nurse must never assume that because a person has a disability, he or she is incapable of self care.
Because of the complex needs of this population group, healthcare teaching often requires an interdisciplinary team effort. In developing a teaching plan, the nurse must assess the need to involve other health professionals such as doctors, social workers, physical therapists, psychologists, and occupational and speech therapists.
As with other clients, the nurse educator has the responsibility to work in concert with individuals with disabilities and their family members to assess learning needs, design appropriate educational interventions, and promote an environment that will enhance learning. The teaching plan must reflect an understanding of the person's disability and incorporate interventions and technologies that will assist the patient in overcoming barriers to learning.
Application of the teaching-learning process is intended to promote adaptive behaviors in people that support their full participation in activities designed to promote health and, in the case of illness, optimal recovery. Emphasis on the various components of the learning process may differ depending on the disability, but it often requires changes in all three domains cognitive, affective, and psychomotor.
Prior to teaching, assessment is always the first step in determining the needs of clients with respect to the nature of their problems or needs, the short- and long-term consequences or effects of their disability, the effectiveness of the coping mechanisms they employ, and the type and extent of sensorimotor, cognitive, perceptual, and communication deficits they experience.
When dealing with persons experiencing a new disability, the nurse must determine the extent of their knowledge with respect to the disability, the amount and types of new information needed to effect changes in behavior, and their readiness to learn.
Assessment should be based on feedback from the patient as well as observation, testing when appropriate, and input from the healthcare team. In some cases, it may be wise to interview family members and significant others to obtain additional information.
In assessing readiness to learn, Diehl (1989) outlines the following questions to be asked, which continue to be relevant today, when the nurse is determining whether the timing of the teaching-learning process is appropriate:
1. Do the individual and family members demonstrate an interest in learning by requesting information or asking questions that help them to determine their needs and solve their problems?
2. Are there barriers to learning such as low literacy skills, vision impairments, hearing deficits, or impaired mobility?
3. If sensory or motor issues exist, is the patient willing and able to use supportive devices?
4. Which learning style best suits the patient in processing information and applying it to self-care activities?
5. Are the goals of the client and the goals of the family similar?
6. Is the patient's environment conducive to learning?
7. Do the learners value learning new information and skills as a way to achieve functional improvement?
The nurse should serve as a mentor to patients and their family members in coordinating and facilitating the multidisciplinary services required to assist persons with disabilities in achieving an optimal level of functioning. This role is especially important when working with a patient who has a new disability.
When family members or significant others are involved in care and serve as the individual's support system in the community, they must be invited right from the very beginning to take an active part in learning information as it applies to assisting with self-care activities and treatments for their loved ones.
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