RHS100:

Course Introduction

Hello, everyone, and welcome to RHS 100: Introduction to Disability Culture. I am very excited to have you on this journey this semester as we explore the world of disability culture. Throughout this course, we will learn about the social, cultural, and legal history of disability in the United States, as well as on a global level. We will cover key values needed to work effectively with people with disabilities; the importance of multicultural competency; societal barriers that hinder equal rights and wellbeing, including prejudice and stigma; disability legislation and policy; employment; and education. Finally, we will explore the use of assistive devices, accommodations, and accessibility of physical spaces and technology, so all people are able to live a satisfactory, autonomous life.

I hope you find this class thought provoking, challenging, and fun. We will spend much of the course examining social media, film, and a variety of first-person, academic and policy narratives to examine the personal, historical, social, and cultural responses to disability. I expect for you to leave this course with a better understanding of the needs and aspirations of those living with disability, as well as the values and skills necessary to work effectively with people with disabilities. Finally, I hope this course will answer some of your questions (and challenge you to begin asking new questions!) about your interest in helping others and ignite the passion to promote change at the individual, community, national, and global levels.

Course Objectives

This course is designed to increase student awareness of personal, interpersonal, and societal aspects of disability, including how disability can be defined and understood differently in varied individual, institutional, and cultural contexts. Students will learn models of disability that will help them to (a) clearly distinguish different ways of conceptualizing disability, and (b) critically think about how disability is represented and understood in varied contexts. Through discussion of class readings and completion of class assignments, students will examine the ethical, economic, and social implications of disability and the dynamics of group and individual behavior that impact social interactions among people with and without disabilities. A strong emphasis will also be placed on understanding disability from a variety of cultural perspectives and assessing the impact of racial, ethnic, gender, socioeconomic, and sociopolitical factors on disability status. At the end of this course, students should be able to do the following:

1. Demonstrate an understanding of disability culture.
2. Discuss attitudes towards people with disabilities.
3. Discuss the critical role of the disability rights and independent living movements on people with disabilities.
4. Describe the models of disability that provide theoretical understanding of the personal, interpersonal, and societal responses to disability.
5. Identify ethical implications associated with varied models of defining and understanding disability.
6. Explain the impact of social and attitudinal factors on individuals with disabilities.
7. Demonstrate sensitivity to and awareness of the effects of prejudice and discrimination specific to people with disabilities. 

Tips and Suggestions:

Tips and suggestions for being a successful learner in an online course include:

Planning

• In addition to becoming familiar with the online learning environment, pay attention to the physical learning environment. Try to arrange everything ergonomically in your learning space.
• Pay close attention to the due dates of the assignments, and check the syllabus regularly in case the instructor makes changes.
• Plan ahead, and plan well. Do not put off quizzes or assignments until the last minute because there is a chance that Canvas might be down when you need it the most!

Communicating

• Check your e-mail regularly, but be patient while waiting for responses.
• Always check the file size when you try to upload a file to share. The bigger the file size, the more difficult it may be to upload and download.
• Communicate with your instructor and classmates by e-mail, Discussions, Instant Messenger, or phone.
• Use courtesy in online communication, and deal with conflict with respect.

Engaging

• Evaluate your own progress by the course objectives and assignments, and regulate your own study pace based on this evaluation. Talk to your instructor if you encounter a problem.
• Participation is important to your learning experience in an online learning environment, so be confident in making contributions. Don't be afraid of making mistakes!
• Identify a way of taking notes you would prefer: use Word, online journal/web logging, note-taking software, bookmarking the websites important to you, or any method that works well for you.
• Be aware of the resources for help available: your instructor, the World Campus HelpDesk, World Campus Student Services, Canvas Help, or a librarian.

Improving Writing Style

• Purdue Online Writing Lab is a good, quick resource for formatting APA style.
• The PSU Library also has Citation and Writing Guides.
• APA Style book: American Psychological Association (2010). Publication Manual of the American Psychological Association, 6th ed. Washington, DC: APA.

 

Module 1 Introduction

This module starts with a warm welcome from the instructor and then moves on to introduce you to the course and the main objectives. After reviewing the tips and suggestions for being a successful online student, the module continues to provide an overview of the areas that will be covered in the course, including the impact of defining normalcy, what disability is and how it is defined, a brief introduction of demographics of people with disabilities, an introduction of the negative attitudes regarding disability, and the importance of person-first language.

Module Objectives

By the end of this module, you will be able to:

• Explain the societal consequences of “normal.”
• Define "disability."
• Discuss the difficulty of defining disability.
• Use person-first language.

Reading/Planning

Complete the assigned reading listed in the Course Schedule before going through the rest of the module.

What Is “Normal”?

So, what does it mean when a person says, “That’s normal” or “That’s not normal?”

Image source: http://theawesomedaily.com/51-awkward-family-photos-that-holds-nothing-back

Normalcy is the accepted average of a society, the norm or the standard. "Normal" is made up of rules for how a society should work and includes expected behaviors, values, thinking, feelings, beliefs, customs, and traditions. While "normal" defines what a society’s standards are, to a greater extent, "normal" becomes a definition of exclusion. It is defined on the absence of factors classified as undesirable, such as deviance, illness, and disability. What happens in a society is that many norms become ingrained, just a part of the way life works, and go unnoticed until someone bumps up or goes completely against these norms. People who stay within the confines of these norms are often unaware there is a classification system that includes characteristics that are judged. For those who do not fit into a society’s norms, however, they are constantly aware of this classification system and judgement they receive by others.

Normalcy is in the eyes of the beholder. As "normal" is made of social standards, it is a social construct. What one society deems as acceptable may be unacceptable in another society. There is actually no such thing as "normal." It is just a concept made up by a group of people.

As we explore the culture of disability this semester, we will learn that disability is a part of social norms, and that it falls into what is seen as not normal. We will also learn that while a person may have a chronic health condition, or is deaf, or is an amputee, this does not necessarily qualify one as having a disability. Disability itself can be nothing more than a construct. In fact, many disability advocacy groups view disability as an illusion, defined by social prejudice and environmental barriers that limit the potential of individuals who are simply different.

For example, many people in the Deaf community do not see themselves as having a disability and would be highly offended if it were suggested. Instead, many persons in the Deaf community have a strong sense of pride and, in fact, will use Deaf-first language to denote this pride referring to themselves as a "Deaf person."

Disability rights activists also state that disability is a normal part of human development that affects almost everyone. Disability is viewed as an "equal opportunity situation" because everyone has the potential to acquire (get) a disability during their lifetime. With advances in medicine, nutrition, and technology, you are able to live longer lives. However, you are also now more likely to live with chronic health conditions. Therefore, you must be willing to see disability as something that affects everyone, and you must take steps to ensure everyone has a positive quality of life and equal rights.

What Is Disability, and How Do You Define It?

Disabilities are categorized into four groups:

• physical disabilities,
• developmental disabilities,
• sensory disabilities, and
• psychiatric disabilities.

"Disability" is a very broad concept with no well-accepted, standardized definition. What happens is that disability is defined based on the purpose and needs of a law, an agency, or a country. According to Scotch (2001), lawmakers have developed some disability policies for specific disabilities, such as for people who are blind or have visual impairments, or those who are Deaf or hard of hearing. Other policies have broadly defined disability to include “a nearly infinite variety of impairments and etiologies” (Scotch, 2001, p. 385).     

Part of what makes disability difficult to define is that it can be highly complex with a variety of bodily functions affected, including:

• vision,
• mobility,
• cognition,
• learning and memory,
• communication,
• hearing, and
• mental health.

Disability ranges in severity, with two people with the same condition affected very differently. For example, missing one of your fingers as a result of an accident may be catastrophic if you were a musician, but perhaps not as devastating if you worked as a teacher. Additionally, people can cope and adjust very differently to disability. A person who has a solid family support system and stable home life may respond differently than a person without these benefits. The environment must also be considered, such as a person’s living or work environment, availability and use of accommodations, access to services and types of services, local and national policies, and physical and societal barriers. Finally, the complexity and multiple variables involved create for significant issues in the ability to accurately measure disability, and therefore to develop a standardized definition.

Examples of two different definitions of disability include those from the Social Security Administration and the Americans with Disabilities Act.

The Social Security Administration (SSA) is a U.S. federal agency that may pay disability benefits to people if they have a long-term medical condition. To qualify for benefits, the SSA has a strict view of disability, with focus on one’s ability to work. A person is considered disabled if

1. the person cannot do the work one did before,
2.  the SSA decides that a person cannot work due to health, even with accommodations, and
3. the disability has lasted or is expected to last for at least 1 year or to result in death.

The Americans with Disabilities Act (ADA) is the civil rights legislation in the United States for people with disabilities. The ADA defines disability as the following:

A person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such impairment, or a person who is perceived by others as having such impairment.

However, neither of these definitions provide a full picture of what, exactly, disability is. These definitions do not include the specific health condition and severity; personal factors, such as the individual appraisal process and coping strategies, attitudes, values, beliefs, emotional regulations, behaviors, temperaments, and self-images; and social factors, including level and type of support, community, and societal attitudes. Nor do they include the environment, including physical barriers, socioeconomic status, health insurance, availability and access to care, and service provisions. Such factors can add complex layers to the functioning and needs of the individual. Furthermore, the SSA and ADA definitions do not include specific illnesses and impairments. While such exclusions can be helpful for people living with a wide variety of disabilities, they also leave much confusion for society to sort out what health conditions and impairments exactly constitute disabilities and how to best serve a people. They leave some health conditions and impairments to be decided upon through court precedent as to whether or not they qualify as a disability, such as post-traumatic stress disorder (PTSD), for example.

Disability policy researchers have criticized the limited definitions of disability that have been provided, stating that these limited definitions often create for a dichotomous, or black and white, view of disability. For example, Scotch (2001) criticizes disability policy’s focus in terms of a person’s ability to work, such as the SSA’s strict definition of disability. Monahan and Wolf (2014) have criticized policy makers for poor attention to the needs of vulnerable populations, such as those with disabilities, including the lack of programming that focuses on quality of life and overemphasizes institutional care, stating “disability can be said to occupy the margins of social policy” (p. 1).

The World Health Organization (WHO) also recognizes the complexity of disability and has pushed for the move away from limited definitions. The International Classification of Functioning, Disability and Health (ICF), developed by WHO in 2001, provides a richer understanding of disability compared to others. The goal of ICF (2001) is to “assess the health, functioning, activities, and factors in the environment that either help or create barriers for people to fully participate in society” (p. 24).

Disability itself is seen as an umbrella term with a focus on three dimensions:

• Impairment in a person’s body structure or function, or mental functioning; examples of impairments include loss of a limb, loss of vision, or memory loss.
• Activity limitation, such as difficulty seeing, hearing, walking, or problem-solving.
• Participation restrictions in regular daily activities, such as working, engaging in social and recreational activities, and obtaining health care and preventive services.

The ICF includes the following in the categories of activities and participation:

• learning and applying knowledge;
• managing tasks and demands;
• mobility (moving and maintaining body positions, handling and moving objects, moving around in the environment, moving around using transportation);
• managing self-care tasks;
• managing domestic life;
• establishing and managing interpersonal relationships and interactions;
• engaging in major life areas (education, employment, managing money or finances); and
• engaging in community, social, and civic life.

As well as understanding society's attitudes towards disability, the ICF recognizes the complexity and intertwining of variables, such as environment, level and types of support, availability and use of assistive technology, availability and accessibility of services, and policy.

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References

Scotch, R. (2001). American disability policy in the twentieth century. In P. K. Longmore, & L. Umansky, (2001). In The new disability history: American perspectives. (375–392). NYU Press: New York, NY.

The World Health Organization. (2011). World report on disability. Retrieved from https://www.who.int/disabilities/world_report/2011/report/en/

Person-First Language

In this course and throughout your daily life, please be careful not to use negative labeling. The use of person-first language is mandatory in this class. Remember that words matter! Negative descriptors only perpetuate stereotypes and uphold long-standing obstacles to equality. Remember that disability is a medical diagnosis and does not define the individual. When you refer to a person by his or her disability or use terms such as “suffers from,” “afflicted with,” “victim,” “retarded,” “challenged,” “special needs,” or “handicapped,” you are devaluing and disrespecting the person, as well as perpetuating pity.

Person-first language is putting the person before the disability, describing what a person has, and not who a person is. For example, say:

• “a person who has a disability,” instead of “a disabled person”;
• “a person with cancer,” instead of “a cancer patient”; or
• “a person with schizophrenia,” instead of “a person who suffers from schizophrenia” or, worse yet, “a schizophrenic.”

Here are more guidelines for person-first language (adapted from the Texas Council for Developmental Disabilities):

• Recognize that people with disabilities are ordinary people with common goals, such as a home, a job, and a family. Talk about people in ordinary terms.
• Never equate a person with a disability—such as referring to someone as retarded, an epileptic, or quadriplegic. These labels are simply medical diagnoses.
• Emphasize abilities, not limitations. For example, say “a man walks with crutches,” and not “he is crippled.”
• Recognize that a disability is not a challenge to be overcome. Do not say people succeed in spite of a disability. Ordinary things and accomplishments do not become extraordinary just because they are done by a person with a disability. What is extraordinary are the lengths people with disabilities have to go through and the barriers they have to overcome to do the most ordinary things.
• Use "handicap" to refer to a barrier created by people or the environment. Use "disability" to indicate a functional limitation that interferes with a person’s mental, physical, or sensory abilities, such as walking, talking, hearing, and learning. For example, people with disabilities who use wheelchairs are handicapped by stairs.
• Do not refer to a person as bound to or confined to a wheelchair. Wheelchairs are liberating to people with disabilities because they provide mobility.
• Do not use "special" to mean segregated, such as separate schools or buses for people with disabilities, or to suggest a disability itself makes someone special.
• Avoid cute euphemisms such as "physically challenged," "inconvenienced," and "differently abled."
• Promote understanding, respect, dignity and positive outlooks.

Other terminology can also be reframed. For example, instead of using the word “problem(s)” use “needs” or “supports”. For example, say:

• “She needs behavior supports” or “requires behavior supports,” and
• “She needs/requires large print,” instead of “has reading problems.”

Here are examples of other examples of person-first language (Texas Council for Developmental Disabilities):