Chapter 9 Questions
1. What factors influence our definition of abnormal behavior and what are the problems associated with such a definition?
• Abnormal behaviors are defined by our culture. What is normal in one culture may be abnormal in another culture. This can present a problem in today’s world, and especially America where so many culture’s cross. We need to be understanding of all people’s culture so we know what is normal in other societies.
2. Identify five purposes for the use of therapeutic recreation services with individuals with psychological or behavioral disorders.
• Coping strategies
• Address environmental influences
• Facilitate positive social interactions
• Fine motor and gross motor skills
• Promote relapse prevention
Wednesday, April 6, 2016
Assignments_08
Chapter 8 Questions
2. Identify the primary objectives of the therapeutic recreation process with each population discussed in this chapter.
2. Identify the primary objectives of the therapeutic recreation process with each population discussed in this chapter.
- Disorders diagnosed in infancy, childhood, or adolescence:
- Prevent remediate inappropriate reactions
- Assess and facilitate acquisition of skills with academic, motor, social-emotional, inclusion
- Promote health and well being
- Intellectual Disability
- Balanced lifestyle
- Decision making
- Leisure skill
- Resource development
- Self-Care
- Environmental awareness
- Severe Multiple Impairments
- Functional skills
- Communication skills
- Social skills
- Leisure skills
- Choice making
- Independent functioning
- Autism
- Social interaction
- Language skills
- Social skills
- Appropriate interactions with others
- Effective motor behaviors
- Daily living skills
- Disorders diagnosed in infancy, childhood, adolescence
- Keeping score at a game
- Reading directions
- Board games
- Intellectual Disability
- Dining out
- Swimming
- Art projects
- Severe Multiple Impairments:
- Picture notebook
- Expressive arts
- Listening to music
- Autism
- Reading directional signs
- Looking at books
- dance
- Flexibility, persistence, consistency, firmness, routine
Assignments_07
Chapter 7 Questions
2. What are the clinical signs of cancer, chronic pain, and chronic fatigue syndrome?
• Cancer: unusual bleeding or discharge, lump or thickening under the skin, change in size and color of a wart or mole, sores that do not heal, change in bowel or bladder habits, chronic hoarseness or nagging cough and chronic indigestion or difficulty swallowing
• Chronic Pain: cycle of pain, decreased movement, inactivity, weight gain, poor sleep, fatigue, headaches, morning stiffness, low back pain
• Short term memory or concentration impairment, sore throat, tender cervical or axillary lymph nodes, headaches or a new type, pattern or severity, unrefreshing sleep, muscle pain, multipoint pain without swelling or redness,
4. What therapeutic recreation strategies are used with pain and fatigue?
• Purpose is to interrupt pain behavior, improve functional abilities, reduce medication use, prevent relapse, and decrease depression and anxiety
• Help clients cope effectively, acquire wellness behaviors, improve self-efficacy, find satisfaction and socialization in leisure behaviors, achieve relaxation
• Promote stress management, time management and physical activity
6. Describe how TRS creates accessible experiences for people with sensory impairments.
• Facilitate leisure skill development and resource awareness
• Training in spatial awareness and balance (for blind)
• Orientation and mobility training
• Help develop sports skills
• Control environmental distractions
• Help develop communication skills
2. What are the clinical signs of cancer, chronic pain, and chronic fatigue syndrome?
• Cancer: unusual bleeding or discharge, lump or thickening under the skin, change in size and color of a wart or mole, sores that do not heal, change in bowel or bladder habits, chronic hoarseness or nagging cough and chronic indigestion or difficulty swallowing
• Chronic Pain: cycle of pain, decreased movement, inactivity, weight gain, poor sleep, fatigue, headaches, morning stiffness, low back pain
• Short term memory or concentration impairment, sore throat, tender cervical or axillary lymph nodes, headaches or a new type, pattern or severity, unrefreshing sleep, muscle pain, multipoint pain without swelling or redness,
4. What therapeutic recreation strategies are used with pain and fatigue?
• Purpose is to interrupt pain behavior, improve functional abilities, reduce medication use, prevent relapse, and decrease depression and anxiety
• Help clients cope effectively, acquire wellness behaviors, improve self-efficacy, find satisfaction and socialization in leisure behaviors, achieve relaxation
• Promote stress management, time management and physical activity
6. Describe how TRS creates accessible experiences for people with sensory impairments.
• Facilitate leisure skill development and resource awareness
• Training in spatial awareness and balance (for blind)
• Orientation and mobility training
• Help develop sports skills
• Control environmental distractions
• Help develop communication skills
Assignments_06
Chapter 6 Questions
2. What are appropriate therapeutic recreation objectives for people with physical impairments?
• Objectives that are helpful to clients with physical impairments are things that will help them move their body. The objectives need to be focused on things that will help them in everyday life such as changing clothes on their own before they swim, transferring in and out of wheelchair to participate in the activities, walking when appropriate and other activities. By doing the recreation, it should help them accomplish something physical that will help them in everyday life and strengthen their body.
4. Explain potential psychosocial and cognitive impacts of physical impairments on clients’ leisure experiences and well-being. How do they affect clients’ participation in activities of daily living?
• At times it clients may feel embarrassed about their impairment and feel like they can’t fit in with all the other people in the sport. One example could be if someone in a wheel chair goes swimming, they won’t be able to just leap off the diving board, but usually must be lowered into the pool at first, this could make them socially uncomfortable. They may also have self-doubt on if they can accomplish this task. Cognitive impairments could include lack of knowledge of the sport and thinking they are not good enough for the sport. By participating in the activities, clients can become knowledgeable about the sports they are in and their situation. They can also begin to feel that they belong in the activity, make friends and find that they can do hard things. This can motivate them to do other things in their daily life that may be challenging.
2. What are appropriate therapeutic recreation objectives for people with physical impairments?
• Objectives that are helpful to clients with physical impairments are things that will help them move their body. The objectives need to be focused on things that will help them in everyday life such as changing clothes on their own before they swim, transferring in and out of wheelchair to participate in the activities, walking when appropriate and other activities. By doing the recreation, it should help them accomplish something physical that will help them in everyday life and strengthen their body.
4. Explain potential psychosocial and cognitive impacts of physical impairments on clients’ leisure experiences and well-being. How do they affect clients’ participation in activities of daily living?
• At times it clients may feel embarrassed about their impairment and feel like they can’t fit in with all the other people in the sport. One example could be if someone in a wheel chair goes swimming, they won’t be able to just leap off the diving board, but usually must be lowered into the pool at first, this could make them socially uncomfortable. They may also have self-doubt on if they can accomplish this task. Cognitive impairments could include lack of knowledge of the sport and thinking they are not good enough for the sport. By participating in the activities, clients can become knowledgeable about the sports they are in and their situation. They can also begin to feel that they belong in the activity, make friends and find that they can do hard things. This can motivate them to do other things in their daily life that may be challenging.
Assignment_05
Chapter 5 Questions
1. Explain why therapeutic recreation specialist should become familiar with basic management tools and techniques.
• By having basic management techniques, we can understand how to make our program accessible to people in ways such as finances, we can reduce safety risks and we can have evidence based care. People will see that we are an organized facility. Management techniques will also teach us how to use technology for things such as charting. Something we should know how to do are marketing, networking, safety management, accessibility, inclusion, as well as ethics and morals.
2. Identify the components of a written plan of operation and discuss their relevance to therapeutic recreation programming.
• Vision, mission, value and goal statements
o This tells what we believe in and what we want to accomplish. Clients will have faith that we can help them and that we will do it in a way that is ethical
• Organizational structure:
o This can identify the type of service we offer. This can also help people to know who to turn to with help of a client
• Scope of Care and Unit structure:
o This can help people know what the purpose of each aspect of the facility are. This will help us know what clients we can help and other organizations to work with
• Programs and services offered:
o This will help recreational therapists to make plans and programs for each client. It helps to see the end goal and how we will get there
• Protocols and Intervention plans:
o This will put the goal of each person out there and what part each person is going to play to reach that goal. This will help us understand each aspect of the client
• Policies, Procedures, Rules:
o This will require us to document interactions with clients, keep people safe, how many staff need to be on an outing with us and other concerns
• Staff Credentials:
o This helps each staff member where they fit into the client’s care. This helps people stay within their scope of practice
• Quality Improvement:
o This helps with, evaluation, risk management, infection control, and documentation
• Participant/ Program Evaluation and Research
o In this way, we can know how to better improve our programs to help people in better ways and to reach more people
3. Identify the various forms of health-care financing and the alternative methods to fund therapeutic recreation services.
• The first party is the client paying, the second party is health-care provider or organizations and the third party is insurance providers.
• Medicare and Medicaid will only pay for services they deem “necessary”
• Scholarships are awarded to those who cannot afford to participate
• United Way will fund social service agencies
• Foundations: usually prominent families in the community or successful businesses
• Grants: from local, state or national government
• Local organizations such as Rotary club
1. Explain why therapeutic recreation specialist should become familiar with basic management tools and techniques.
• By having basic management techniques, we can understand how to make our program accessible to people in ways such as finances, we can reduce safety risks and we can have evidence based care. People will see that we are an organized facility. Management techniques will also teach us how to use technology for things such as charting. Something we should know how to do are marketing, networking, safety management, accessibility, inclusion, as well as ethics and morals.
2. Identify the components of a written plan of operation and discuss their relevance to therapeutic recreation programming.
• Vision, mission, value and goal statements
o This tells what we believe in and what we want to accomplish. Clients will have faith that we can help them and that we will do it in a way that is ethical
• Organizational structure:
o This can identify the type of service we offer. This can also help people to know who to turn to with help of a client
• Scope of Care and Unit structure:
o This can help people know what the purpose of each aspect of the facility are. This will help us know what clients we can help and other organizations to work with
• Programs and services offered:
o This will help recreational therapists to make plans and programs for each client. It helps to see the end goal and how we will get there
• Protocols and Intervention plans:
o This will put the goal of each person out there and what part each person is going to play to reach that goal. This will help us understand each aspect of the client
• Policies, Procedures, Rules:
o This will require us to document interactions with clients, keep people safe, how many staff need to be on an outing with us and other concerns
• Staff Credentials:
o This helps each staff member where they fit into the client’s care. This helps people stay within their scope of practice
• Quality Improvement:
o This helps with, evaluation, risk management, infection control, and documentation
• Participant/ Program Evaluation and Research
o In this way, we can know how to better improve our programs to help people in better ways and to reach more people
3. Identify the various forms of health-care financing and the alternative methods to fund therapeutic recreation services.
• The first party is the client paying, the second party is health-care provider or organizations and the third party is insurance providers.
• Medicare and Medicaid will only pay for services they deem “necessary”
• Scholarships are awarded to those who cannot afford to participate
• United Way will fund social service agencies
• Foundations: usually prominent families in the community or successful businesses
• Grants: from local, state or national government
• Local organizations such as Rotary club
Assignments_04
Chapter 4 Questions
2. What cognitive, social, physical, psychological, spiritual and leisure behaviors do TRSs consider during the assessment phase of designing individual plans?
• Cognitive: recognition, attention skills, short term and long term memory, orientation to person, place or time, judgement, problem solving, organization, sequencing, counting
• Social: language with others, attitude during interactions, communication, sportsmanship, interactions with same and opposite sex, cooperation, waiting, taking turns, sharing
• Physical: gross and fine motor skills, sensory, coordination, balance, patterning of movements, perceptions, endurance strength
• Psychological: listening, responding, demonstrating appreciation, accepting responsibility, anger management, attitudes toward self, expression,
• Spiritual: comfort and meaning, relationships, pets, nature
• Leisure and play: interests, patterns, needs knowledge, barriers
5. What are the criteria for writing statements with measureable outcomes?
• Need to include: minimal level of expected behavior change, condition under which the behavior is observed, criterion or standard of quality it should demonstrate that outcome is achieved
• Has 3 features:
o Action verb stating observable and measureable behavior outcome in one of the 6 behaviors
o Conditions relevant to the outcome-activities, environment, etc.
o Describing how well client must perform so TRS can judge progress and effectiveness.
10. What types of information are included in discharge/referral/ transition plans? Give examples of how this information is moderated by the client’s culture.
• Progress: summarizes progress toward desired outcome, also the responses of client to interventions and staff interactions
• Functional abilities assessment: compares functional capacities to expectations of place transfer is expected. TRS identifies additional skills client’s needs in new environment.
• Transition recommendations: prepares outcomes and goals, suggests experiences that would be helpful and agencies that offer that
• Follow-up Plan: outline of dates and procedures that are used in the transition. Makes arrangements of meetings, informal conversation and program reports.
2. What cognitive, social, physical, psychological, spiritual and leisure behaviors do TRSs consider during the assessment phase of designing individual plans?
• Cognitive: recognition, attention skills, short term and long term memory, orientation to person, place or time, judgement, problem solving, organization, sequencing, counting
• Social: language with others, attitude during interactions, communication, sportsmanship, interactions with same and opposite sex, cooperation, waiting, taking turns, sharing
• Physical: gross and fine motor skills, sensory, coordination, balance, patterning of movements, perceptions, endurance strength
• Psychological: listening, responding, demonstrating appreciation, accepting responsibility, anger management, attitudes toward self, expression,
• Spiritual: comfort and meaning, relationships, pets, nature
• Leisure and play: interests, patterns, needs knowledge, barriers
5. What are the criteria for writing statements with measureable outcomes?
• Need to include: minimal level of expected behavior change, condition under which the behavior is observed, criterion or standard of quality it should demonstrate that outcome is achieved
• Has 3 features:
o Action verb stating observable and measureable behavior outcome in one of the 6 behaviors
o Conditions relevant to the outcome-activities, environment, etc.
o Describing how well client must perform so TRS can judge progress and effectiveness.
10. What types of information are included in discharge/referral/ transition plans? Give examples of how this information is moderated by the client’s culture.
• Progress: summarizes progress toward desired outcome, also the responses of client to interventions and staff interactions
• Functional abilities assessment: compares functional capacities to expectations of place transfer is expected. TRS identifies additional skills client’s needs in new environment.
• Transition recommendations: prepares outcomes and goals, suggests experiences that would be helpful and agencies that offer that
• Follow-up Plan: outline of dates and procedures that are used in the transition. Makes arrangements of meetings, informal conversation and program reports.
Assignments_03
Chapter 3 Study Questions
1. What is a helping relationship? What implications does it have for therapeutic recreation programming?
• A helping relationship is one that is positive and gives support for another person. In a helping relationship both the helper and the client grow. A helping relationship is important in therapeutic recreation because we have to be able to support the client. They are going through a hard time and need someone to understand. We can help them see their potential and in return we become a better person. I don’t think you can interact with people like that and have relationships like that without coming out a better person.
4. What is meant by the ethics of helping? Discuss several ethical problems that helpers face.
• Ethics of helping I think all goes back to the reason behind it. If you truly care about the client then you will do everything that is morally right to help that person. One thing that people face with this is not allowing the client to make their own decisions. We may sometimes make their disability a bigger deal than it really is and forget that they are capable of making their own choice. Something else we must be careful of is how dependent our client is on us. We need them to trust us and need us, but to some point that has to stop. Our purpose is to help them become self-efficient not dependent on a therapist. A problem we talked about in my RM 343 class that relates to this is children. Children must have a parent’s permission to participate in somethings. Many times the child doesn’t understand what is a risk and what is required so we must determine if it is ethically right for a parent to sign for a child in that way.
6. Identify five interpersonal facilitation skills and discuss the importance of each in developing a helping relationship.
• Leading: in a helping relationship the client and the helper are on equal ground. It is important to let the client ask questions and make suggestions and try to take the lead because that is our whole purpose. We want them to be dependent on themselves and by leading they can do that.
• Warmth: we talked about in class that people don’t care how much you know until they know how much you care. It is important that the client can see us as friendly and that we genuinely care about them or they won’t trust the things we ask them to do.
• Listening: this isn’t just hearing, but actively listening can help the client feel that they are understood. If we don’t understand their feelings and situation, we can’t help them overcome it.
• Informing: when a client asks a question there may be a deeper question underneath. In informing and responding we should be sensitive to those questions. I think it will help them gain our trust and we can be aware of our clients fears and feelings so we don’t do anything to further harm that.
• Empathy: this helps the relationship feel like it is equal. You don’t want the person helping you to pull you up until they have been where you are.
7. How does one’s culture impact the helping relationship and use of various interventions?
• People have different customs and beliefs in many cultures. One example that I learned on my mission is that in Hispanic culture, they believe in taking care of family in the home when they are not able to take care of themselves. Suggesting something like putting that family member in a nursing home shows to them that you don’t actually care about their family. Words and gestures in other languages can be insulting. Different religions have different beliefs on what drugs and treatments are clean and worthy to use. It is important to be aware and sensitive to these things as to not offend the client.
1. What is a helping relationship? What implications does it have for therapeutic recreation programming?
• A helping relationship is one that is positive and gives support for another person. In a helping relationship both the helper and the client grow. A helping relationship is important in therapeutic recreation because we have to be able to support the client. They are going through a hard time and need someone to understand. We can help them see their potential and in return we become a better person. I don’t think you can interact with people like that and have relationships like that without coming out a better person.
4. What is meant by the ethics of helping? Discuss several ethical problems that helpers face.
• Ethics of helping I think all goes back to the reason behind it. If you truly care about the client then you will do everything that is morally right to help that person. One thing that people face with this is not allowing the client to make their own decisions. We may sometimes make their disability a bigger deal than it really is and forget that they are capable of making their own choice. Something else we must be careful of is how dependent our client is on us. We need them to trust us and need us, but to some point that has to stop. Our purpose is to help them become self-efficient not dependent on a therapist. A problem we talked about in my RM 343 class that relates to this is children. Children must have a parent’s permission to participate in somethings. Many times the child doesn’t understand what is a risk and what is required so we must determine if it is ethically right for a parent to sign for a child in that way.
6. Identify five interpersonal facilitation skills and discuss the importance of each in developing a helping relationship.
• Leading: in a helping relationship the client and the helper are on equal ground. It is important to let the client ask questions and make suggestions and try to take the lead because that is our whole purpose. We want them to be dependent on themselves and by leading they can do that.
• Warmth: we talked about in class that people don’t care how much you know until they know how much you care. It is important that the client can see us as friendly and that we genuinely care about them or they won’t trust the things we ask them to do.
• Listening: this isn’t just hearing, but actively listening can help the client feel that they are understood. If we don’t understand their feelings and situation, we can’t help them overcome it.
• Informing: when a client asks a question there may be a deeper question underneath. In informing and responding we should be sensitive to those questions. I think it will help them gain our trust and we can be aware of our clients fears and feelings so we don’t do anything to further harm that.
• Empathy: this helps the relationship feel like it is equal. You don’t want the person helping you to pull you up until they have been where you are.
7. How does one’s culture impact the helping relationship and use of various interventions?
• People have different customs and beliefs in many cultures. One example that I learned on my mission is that in Hispanic culture, they believe in taking care of family in the home when they are not able to take care of themselves. Suggesting something like putting that family member in a nursing home shows to them that you don’t actually care about their family. Words and gestures in other languages can be insulting. Different religions have different beliefs on what drugs and treatments are clean and worthy to use. It is important to be aware and sensitive to these things as to not offend the client.
Assignments_02
Chapter 2 Questions
1. Briefly describe the events and factors that contributed to the emergence of the National Therapeutic Recreation Society in 1966.
• In the 1965 the National Recreation and Parks Association was organized to preside over the American Institute of Park Executives, the national Recreation Association, the National Conference on State parks, the American Association of zoological parks and aquariums, and the American Recreation society. In October 1966, the hospital recreation section of the American recreation society merged to become the National Therapeutic recreation society.
2. Identify five qualities of a profession and discuss the current status of therapeutic recreation in relation to each.
1. Provide a needed service: society’s attitude toward people with disabilities have changed. They are integrated into our society and work among us as our peers. The service is still not seen as necessarily needed in society by all people, but recreation has become a big part of people’s everyday lives.
2. Subgroups/ professional organizations: ATRA and NTRS are working to address health concerns in the present. These organizations promote inclusion to all people
3. Standards of Practice/ code of ethics: two levels of practice have been established (professional and assistant) Recreational therapists now must be certified by the CTRS and in 4 states they require licensure for practice.
4. Body of knowledge: ATRA along with universities are conducting studies on the effects of therapeutic recreation. Research has been published in professional journals
5. Education and training: ATRA established a core that universities will teach, but there has been a decline in students in these undergraduate programs.
3. Identify the philosophical perspective that have developed throughout the history of the profession. What were the historical factors that led to the emergence of each perspective?
• In the first and second centuries people saw recreation as a therapeutic look. They saw that things such as music and art could heal someone. During the middle ages, people with disabilities were shut out of society and seen as a problem. That lasted for a while, but as the Renaissance came, the church provided means to help people with disabilities. They began to see it as a way to serve other people. During the industrial revolution, people were seen as a menace to society if they couldn’t help, but and they saw recreation as serving those that weren’t within the normal range of people. I think the events of the time have shaped the way people feel about this. In societies that are competitive and require a lot of time, recreation has been seen as something for the less fortunate. Today many people participate in recreation, but it is still seen as more of a distraction than a profession.
4. Given your understanding of the history of therapeutic recreation, what factors will influence the evolution of these philosophical perspectives in the future?
• I think the attitude of society will help. I noticed that when the church was strong, people had more Christian belief systems and they were more willing to do anything to help those with disability. I think as our society moves more and more competitive people have less time to serve others and they have less time for recreation. Recreation seems to be put on the back burner of people’s lives. I know recreation has been therapeutic for me growing up, I wouldn’t have the family relationship I have without it. I think as medicine gets more advanced it can affect that. They will either be able to just fix everyone’s problem without having rehab, but I can also see that people will be so focused on the bandage and surgeries they will forget about how the person is feeling and that they don’t just need to live, they need a reason to live.
5. What events led to the creation of the American Therapeutic Recreation Association in 1984?
• There had been disagreements in the NTRS about practices in the health care field. People in health care wanted more so they could compete with physical and occupational therapists. ATRA was established to get those things they wanted to help more in the healthcare department rather than just the parks and recreation area.
6. What have been the similarities between ATRA and NTRS? What has each organization contributed to the advancement of the profession and what might each contribute to a new organization?
• ATRA and NTRS have the same goals that they want people to experience recreation in a way that will be therapeutic, but they go about that in different ways. ATRA wants more of a medical approach. They feel there need to be more than just the recreation whereas the NTRS believes that the recreation itself is what is therapeutic.
• Many people have different beliefs about recreation and the use of it. I feel like different people can connect with the different organizations based on their belief and apply that in the workplace. It can also be helpful because each patient is different. One patient may benefit from the approach ATRA gives in that they need more than just the recreation whereas another may feel that the recreation itself was therapeutic.
7. What is the role and purpose of the National Council for Therapeutic Recreation Certification? What is its history and significance in the therapeutic recreation profession?
• This organization establishes the standards for a therapeutic recreational specialist. They established what it takes to be certified in the field and grant recognition to those who are certified.
• Because of their contribution, recreational therapists are more recognized as professionals because they have a standard to meet before they can become such.
1. Briefly describe the events and factors that contributed to the emergence of the National Therapeutic Recreation Society in 1966.
• In the 1965 the National Recreation and Parks Association was organized to preside over the American Institute of Park Executives, the national Recreation Association, the National Conference on State parks, the American Association of zoological parks and aquariums, and the American Recreation society. In October 1966, the hospital recreation section of the American recreation society merged to become the National Therapeutic recreation society.
2. Identify five qualities of a profession and discuss the current status of therapeutic recreation in relation to each.
1. Provide a needed service: society’s attitude toward people with disabilities have changed. They are integrated into our society and work among us as our peers. The service is still not seen as necessarily needed in society by all people, but recreation has become a big part of people’s everyday lives.
2. Subgroups/ professional organizations: ATRA and NTRS are working to address health concerns in the present. These organizations promote inclusion to all people
3. Standards of Practice/ code of ethics: two levels of practice have been established (professional and assistant) Recreational therapists now must be certified by the CTRS and in 4 states they require licensure for practice.
4. Body of knowledge: ATRA along with universities are conducting studies on the effects of therapeutic recreation. Research has been published in professional journals
5. Education and training: ATRA established a core that universities will teach, but there has been a decline in students in these undergraduate programs.
3. Identify the philosophical perspective that have developed throughout the history of the profession. What were the historical factors that led to the emergence of each perspective?
• In the first and second centuries people saw recreation as a therapeutic look. They saw that things such as music and art could heal someone. During the middle ages, people with disabilities were shut out of society and seen as a problem. That lasted for a while, but as the Renaissance came, the church provided means to help people with disabilities. They began to see it as a way to serve other people. During the industrial revolution, people were seen as a menace to society if they couldn’t help, but and they saw recreation as serving those that weren’t within the normal range of people. I think the events of the time have shaped the way people feel about this. In societies that are competitive and require a lot of time, recreation has been seen as something for the less fortunate. Today many people participate in recreation, but it is still seen as more of a distraction than a profession.
4. Given your understanding of the history of therapeutic recreation, what factors will influence the evolution of these philosophical perspectives in the future?
• I think the attitude of society will help. I noticed that when the church was strong, people had more Christian belief systems and they were more willing to do anything to help those with disability. I think as our society moves more and more competitive people have less time to serve others and they have less time for recreation. Recreation seems to be put on the back burner of people’s lives. I know recreation has been therapeutic for me growing up, I wouldn’t have the family relationship I have without it. I think as medicine gets more advanced it can affect that. They will either be able to just fix everyone’s problem without having rehab, but I can also see that people will be so focused on the bandage and surgeries they will forget about how the person is feeling and that they don’t just need to live, they need a reason to live.
5. What events led to the creation of the American Therapeutic Recreation Association in 1984?
• There had been disagreements in the NTRS about practices in the health care field. People in health care wanted more so they could compete with physical and occupational therapists. ATRA was established to get those things they wanted to help more in the healthcare department rather than just the parks and recreation area.
6. What have been the similarities between ATRA and NTRS? What has each organization contributed to the advancement of the profession and what might each contribute to a new organization?
• ATRA and NTRS have the same goals that they want people to experience recreation in a way that will be therapeutic, but they go about that in different ways. ATRA wants more of a medical approach. They feel there need to be more than just the recreation whereas the NTRS believes that the recreation itself is what is therapeutic.
• Many people have different beliefs about recreation and the use of it. I feel like different people can connect with the different organizations based on their belief and apply that in the workplace. It can also be helpful because each patient is different. One patient may benefit from the approach ATRA gives in that they need more than just the recreation whereas another may feel that the recreation itself was therapeutic.
7. What is the role and purpose of the National Council for Therapeutic Recreation Certification? What is its history and significance in the therapeutic recreation profession?
• This organization establishes the standards for a therapeutic recreational specialist. They established what it takes to be certified in the field and grant recognition to those who are certified.
• Because of their contribution, recreational therapists are more recognized as professionals because they have a standard to meet before they can become such.
Assignments_01
Chapter 1 Questions
- What factors have contributed to a redefinition of therapeutic recreation?
Therapeutic recreation has been used as a different form of rehab. Most professionals have seen rehab as having physical implications, but therapeutic recreation uses rehab to help someone in the overall wellbeing. The World Health Organization defined health as a state of the overall well-being of a person. The IFC checklist has helped evaluate the state of health a person is in, which can then allow a recreational therapist to provide services. - What is the difference between recreation and therapeutic recreation services? What makes therapeutic recreation unique? Explain how each is related to health and wellness.
Recreation and therapeutic recreation have for a long time been seen as two separate things. I feel like lately, we have seen more of an idea that recreation is therapeutic. Recreation is seen more as a psychological response to a something physical, but therapeutic recreation includes our body, mind, and soul. Each help us with our overall health, but therapeutic recreation gives us a chance to reflect on that physical experience. - Identify and discuss the similarities and difference among the various therapeutic recreation practice models.
All of the models seem to have the same outcome. Each of them want to help improve the overall health of the client, but how they get there and their idea of what overall health means can be different. Some models such as the leisure ability model and the self-determination model seem to be saying that if one is independent in their leisure activities, they will feel enjoyment and accomplishment. Other models such as the Aristotelian Good life model focus mostly on what will make the client the most happy. All the models seem to talk about improving the quality of life. - According to the various models, what are the primary treatment or intervention outcomes that therapeutic recreation programs seeks to achieve? Give examples of how each is used in a given setting.
- Interpret each of the three goals identified in the outcome model. What are example of evidence for each outcome?
- Optimal health: Even though someone may be suffering from a terminal illness, they could be in a state of overall wellness because of their ability to remain alert to family relationships, express emotions and find meaning in life
- Quality of life: This is from a psychological and spiritual point of view. People can improve the quality of life as they find purpose and meaning in life
- Functional capacity: this refers to the person’s strength in mental, physical, psychological, spiritual and social health.
- According to the service delivery model, what are the four service components used in comprehensive therapeutic recreation practice? What relationship do they have to outcome goals?
- Diagnosis/ needs assessment
- Treatment/rehabilitation
- Education
- Prevention/ health promotion
Articles_05
Article Critique 3
Title: Not Just a Wheelchair, Not Just a Woman: Self Identity and Leisure
Author: Karla A. Henderson and Leanne A. Bedini
Date: 1994
Summary: This study interviewed 30 women with a disability that were involved in their community. The group consisted of a variety of women. Some were married, some were single. There were different nationalities represented in this sample. The purpose of this was to see the different leisure styles of women with disabilities and how it can affect their self-identity, woman identity, and body self-esteem. Many women expressed that they felt they had limitations because of their disabilities. Through leisure these women were able to find self-identity. Leisure helped them come to terms with their condition and love themselves despite it. Most women felt a disconnect with social norms because of their leisure differences, especially when they couldn’t fulfill societal roles. Many women feel that they already have a disadvantage in society, a sort of “societal handicap”. A physical disability on top of that makes women feel less empowered. Women that participated in leisure activities reported a higher self-esteem and overall self-image.
Strengths: I really enjoyed the idea of this article. I think it is really cool to think that leisure can empower people in their self-identity and body image. I think the article did a really good at pointing this out. I have seen this evidence in many people. Leisure can make us feel free of our limitations.
Weaknesses: I really didn’t like how this article portrayed women. I felt like this showed women as inferior to men and was slightly feminist. I think this is an important concept for men and women. Yes, women probably struggle a little more with self-identity, but it is a common problem, I think it is just voiced more by men. I think this idea could be cool if it was researched in men as well.
Application: I know that in the field of therapeutic recreation, I will be working with women as well as men. I think it is important to remember that women do struggle with the concept of self-identity and really care about fitting into society. Even though I may be helping someone with a physical disability, the idea of how the perceive them-self can be affected and helped as well through leisure.
Personal Feelings: I know that leisure has helped me with these things. When I am hiking or swimming or doing those things I love, it makes me feel free. I love leisure can affect that. Many people today feel that leisure is just something to do in our spare time if they have it, but it is truly therapeutic and needful in our lives.
Title: Not Just a Wheelchair, Not Just a Woman: Self Identity and Leisure
Author: Karla A. Henderson and Leanne A. Bedini
Date: 1994
Summary: This study interviewed 30 women with a disability that were involved in their community. The group consisted of a variety of women. Some were married, some were single. There were different nationalities represented in this sample. The purpose of this was to see the different leisure styles of women with disabilities and how it can affect their self-identity, woman identity, and body self-esteem. Many women expressed that they felt they had limitations because of their disabilities. Through leisure these women were able to find self-identity. Leisure helped them come to terms with their condition and love themselves despite it. Most women felt a disconnect with social norms because of their leisure differences, especially when they couldn’t fulfill societal roles. Many women feel that they already have a disadvantage in society, a sort of “societal handicap”. A physical disability on top of that makes women feel less empowered. Women that participated in leisure activities reported a higher self-esteem and overall self-image.
Strengths: I really enjoyed the idea of this article. I think it is really cool to think that leisure can empower people in their self-identity and body image. I think the article did a really good at pointing this out. I have seen this evidence in many people. Leisure can make us feel free of our limitations.
Weaknesses: I really didn’t like how this article portrayed women. I felt like this showed women as inferior to men and was slightly feminist. I think this is an important concept for men and women. Yes, women probably struggle a little more with self-identity, but it is a common problem, I think it is just voiced more by men. I think this idea could be cool if it was researched in men as well.
Application: I know that in the field of therapeutic recreation, I will be working with women as well as men. I think it is important to remember that women do struggle with the concept of self-identity and really care about fitting into society. Even though I may be helping someone with a physical disability, the idea of how the perceive them-self can be affected and helped as well through leisure.
Personal Feelings: I know that leisure has helped me with these things. When I am hiking or swimming or doing those things I love, it makes me feel free. I love leisure can affect that. Many people today feel that leisure is just something to do in our spare time if they have it, but it is truly therapeutic and needful in our lives.
articles_04
Article Critique 2
Title: Addressing Well-Being in Early and Middle Childhood
Author: Jamie RaNae Bennett, Sanda K Negley, Mary S. Wells, Peg Connolly
Volume L, No. 1, 2016 Therapeutic Recreation Journal Salt Lake City, Utah
Summary: Mental health is something that is developed in the early and middle stages of childhood. Research suggests that if a child experiences traumatic events during this time in their life, it is directly correlated with mental illnesses such as depression and anxiety as an adult. The study took 110 4th grade students and gave them a pre and posttest of their health related quality of life. Between these tests, they administered an eight week curriculum that implemented therapeutic recreation. During this curriculum, students are taught about emotions, stresses and ways to identify and manage those feelings. Their studies concluded that having a TR intervention in a school setting has increased health related quality of life. There was not an increase in the quality of life results in the treatment group, but the control group showed a decrease. TR intervention may not increase their perception on quality of life, but as the school year goes on and gets more stressed, they are able to maintain their health.
Strengths: I really enjoyed this article. I agree that students are beginning to have stresses at that age and, it being some of the first times they have experienced it, they don’t know what to do. I know that recreation has helped me in my life and it relieves my stresses. I think this study was well structured and that it has good implications. I really like the age group they worked with because that age group can give structured responses and helpful information
Weaknesses: I really wish they had a larger testing group. I think it would be interesting to see if this helped students in maybe underprivileged areas. I also don’t really like that they did this in a charter school. Most children do not attend a charter school growing up and from my experience, they are a little more structured than public school. I think it would be interesting to see if it had the same effect in public schools.
Application: I think this could give a great future to recreational therapists. It would be great to be able to work in a school and help children in that way! That would be a job I am interested in. I think this would be an interesting study for teachers to read because even though they are not TR certified, they can implement these things in the classroom. I would want my child to learn in this kind of environment.
Personal feelings: I personally really enjoyed this article and thought it was very well structured. I think it was very insightful on how children learn. By the time we are adults, most of us have learned how to cope with stress, but much of that is learned in the home. Some children do not have that environment at home and do not develop those skills. I think it would be great if they taught stress management at school through recreation. Recreation is how I let out my stresses.
Title: Addressing Well-Being in Early and Middle Childhood
Author: Jamie RaNae Bennett, Sanda K Negley, Mary S. Wells, Peg Connolly
Volume L, No. 1, 2016 Therapeutic Recreation Journal Salt Lake City, Utah
Summary: Mental health is something that is developed in the early and middle stages of childhood. Research suggests that if a child experiences traumatic events during this time in their life, it is directly correlated with mental illnesses such as depression and anxiety as an adult. The study took 110 4th grade students and gave them a pre and posttest of their health related quality of life. Between these tests, they administered an eight week curriculum that implemented therapeutic recreation. During this curriculum, students are taught about emotions, stresses and ways to identify and manage those feelings. Their studies concluded that having a TR intervention in a school setting has increased health related quality of life. There was not an increase in the quality of life results in the treatment group, but the control group showed a decrease. TR intervention may not increase their perception on quality of life, but as the school year goes on and gets more stressed, they are able to maintain their health.
Strengths: I really enjoyed this article. I agree that students are beginning to have stresses at that age and, it being some of the first times they have experienced it, they don’t know what to do. I know that recreation has helped me in my life and it relieves my stresses. I think this study was well structured and that it has good implications. I really like the age group they worked with because that age group can give structured responses and helpful information
Weaknesses: I really wish they had a larger testing group. I think it would be interesting to see if this helped students in maybe underprivileged areas. I also don’t really like that they did this in a charter school. Most children do not attend a charter school growing up and from my experience, they are a little more structured than public school. I think it would be interesting to see if it had the same effect in public schools.
Application: I think this could give a great future to recreational therapists. It would be great to be able to work in a school and help children in that way! That would be a job I am interested in. I think this would be an interesting study for teachers to read because even though they are not TR certified, they can implement these things in the classroom. I would want my child to learn in this kind of environment.
Personal feelings: I personally really enjoyed this article and thought it was very well structured. I think it was very insightful on how children learn. By the time we are adults, most of us have learned how to cope with stress, but much of that is learned in the home. Some children do not have that environment at home and do not develop those skills. I think it would be great if they taught stress management at school through recreation. Recreation is how I let out my stresses.
Articles_03
Article Critique 1
1. Title, Author, Date, Where
• Family Leisure among Families with a Child in Mental Health Treatment: Therapeutic Recreation Implications
• Jasmine A Townsend and Ramon B. Zabriskie
• 2010
2. Summary:
• This article talks about the correlation between family recreation and family functioning in families with a child that has been in treatment for mental health. They took a sample of youth ages 13-17 who had been in treatment for mental health and their parents and tested a variety of aspects. This sample came from different ethnic backgrounds, different states and different incomes. The only thing they really had in common was their treatment of mental health. They noticed that the more the family participated in leisure activities together were higher functioning in things like communication and overall trust in each other.
3. Strengths of article
• I thought it was really interesting that they took a sample of youth from different states and incomes meaning they all grew up in different backgrounds. I think this illustrates the point that mental illness can be an effect on any family. I also thought the overall study of this idea was interesting. I noticed that in “The Family: A proclamation to the world” it mentions that successful marriages and families are established on 9 aspects and one of those is family recreation. It is an important part of a family staying together and taking time for each other.
4. Weaknesses of the article
• One weakness I noticed was that they talk a lot about core recreation. I have a basic understanding of this concept, but it seemed a little confusing for me. For someone that is looking to apply this principle in my own family, it would be helpful if they would elaborate a little more on the idea of core recreation. I also wish they would have studied boys instead of just girls. I think it would be interesting to see if one group is more receptive to family recreation than another group or if it works across the family. I think men and women cope with mental illness differently and it would be interesting to see if this was kind of a universal cure. Another thing I didn’t like about the article, was towards the end it made recreation sound a little more like a distraction than therapy. I talked about how taking a family on vacation can just help them forget about the problems at home. So I guess my question is, does it make the problems go away or just make it so we don’t have to face them for a while.
5. Application
• I mentioned above that I wish it would elaborate more on core recreation. I feel like this idea can be helpful to any family. As one studying recreation, it is apparent that it will be an important part of my future family. I feel like no family can know if and when mental illness will creep into their family. If this could be something that is preventive to mental illness, I think any family that has been through this would be first to try it out.
6. Personal interest
• My dad and my sister have always suffered from depression and I have suffered from anxiety our whole lives. I have wondered if there were things that could have been done in my family to stop the pain that has been an apparent part of our lives. I also have read many studies on the heredity of mental illness. If there was a way that I could prevent my future children from going through this trial I went through, I would do it. Something as simple as family recreation seems like a way that I could manage in helping my future family overcome or avoid mental illness.
1. Title, Author, Date, Where
• Family Leisure among Families with a Child in Mental Health Treatment: Therapeutic Recreation Implications
• Jasmine A Townsend and Ramon B. Zabriskie
• 2010
2. Summary:
• This article talks about the correlation between family recreation and family functioning in families with a child that has been in treatment for mental health. They took a sample of youth ages 13-17 who had been in treatment for mental health and their parents and tested a variety of aspects. This sample came from different ethnic backgrounds, different states and different incomes. The only thing they really had in common was their treatment of mental health. They noticed that the more the family participated in leisure activities together were higher functioning in things like communication and overall trust in each other.
3. Strengths of article
• I thought it was really interesting that they took a sample of youth from different states and incomes meaning they all grew up in different backgrounds. I think this illustrates the point that mental illness can be an effect on any family. I also thought the overall study of this idea was interesting. I noticed that in “The Family: A proclamation to the world” it mentions that successful marriages and families are established on 9 aspects and one of those is family recreation. It is an important part of a family staying together and taking time for each other.
4. Weaknesses of the article
• One weakness I noticed was that they talk a lot about core recreation. I have a basic understanding of this concept, but it seemed a little confusing for me. For someone that is looking to apply this principle in my own family, it would be helpful if they would elaborate a little more on the idea of core recreation. I also wish they would have studied boys instead of just girls. I think it would be interesting to see if one group is more receptive to family recreation than another group or if it works across the family. I think men and women cope with mental illness differently and it would be interesting to see if this was kind of a universal cure. Another thing I didn’t like about the article, was towards the end it made recreation sound a little more like a distraction than therapy. I talked about how taking a family on vacation can just help them forget about the problems at home. So I guess my question is, does it make the problems go away or just make it so we don’t have to face them for a while.
5. Application
• I mentioned above that I wish it would elaborate more on core recreation. I feel like this idea can be helpful to any family. As one studying recreation, it is apparent that it will be an important part of my future family. I feel like no family can know if and when mental illness will creep into their family. If this could be something that is preventive to mental illness, I think any family that has been through this would be first to try it out.
6. Personal interest
• My dad and my sister have always suffered from depression and I have suffered from anxiety our whole lives. I have wondered if there were things that could have been done in my family to stop the pain that has been an apparent part of our lives. I also have read many studies on the heredity of mental illness. If there was a way that I could prevent my future children from going through this trial I went through, I would do it. Something as simple as family recreation seems like a way that I could manage in helping my future family overcome or avoid mental illness.
Articles_02
Contribution of visualart-making to the subjective well-being of women living with cancer: A qualitative study
• Frances Reynolds, PhD , ,
• Kee Hean Lim, MSc
• School of Health Sciences and Social Care, Mary Seacole Building, Brunel University, Uxbridge, Middlesex UB8 3PH, United Kingdom
• http://dx.doi.org/10.1016/j.aip.2006.09.005, How to Cite or Link Using DOI
• Permissions & Reprints
________________________________________
Abstract
This qualitative study examined accounts of women diagnosed with cancer who engaged regularly in art as a leisure activity. The purpose of the study was to explore participants’ views about the contribution of art-making to their subjective well-being in the context of living with cancer. The study was based on the principles of interpretative phenomenological analysis (IPA). A convenience sample of 12 women aged between 23 and 74 years participated in semi-structured interviews, and their accounts were analysed thematically. Participants described a range of ongoing difficulties associated with cancer such as fear for the future, pain, sleeplessness, role loss, activity restriction, reduced self-confidence and altered social relationships. They described art-making as supporting subjective well-being in four major ways. Creative activities helped participants to focus outwards on positive life experiences relieving debilitating preoccupation with illness. Art-making enhanced self-worth and identity through providing opportunities to demonstrate continuity, challenge and achievement. It also enabled participants to maintain a social identity that resisted definition by cancer. For a minority, art enabled symbolic expression of feelings, especially during chemotherapy. The findings supplement previous case studies and suggest that meaningful creative activity may provide psychosocial resources for living with cancer.
Keywords
• Cancer;
• Well-being;
• Identity;
• Art;
• Creativity;
• Leisure
________________________________________
Introduction
This study explored the meanings of leisure-based art-making for women who were living with cancer. It is increasingly recognised that many people with cancer need to draw upon psychosocial resources such as positive attitudes, spiritual beliefs, information and support in order to cope with their condition (Dunn, Steginga, Rosoman, & Millichap, 2003; Jenkins & Pargament, 1995). Creative art-making during leisure time may offer another resource. Some people identify their diagnosis of cancer as a “wake-up call” to be self-expressive, and turn to art and other creative activities (Predeger, 1996). Most studies of cancer patients undertaking art therapy have focused upon those who are in the relatively early stages after diagnosis, when fear and grief may be particularly intense. Participants at this stage of the cancer trajectory seem to use art to communicate feelings of anxiety, anger and body estrangement, which are difficult to put into words ( [Borgmann, 2002] and [Lynn, 1994]). Sibbett (2005) has argued that the creative process may also help those who live with cancer to tolerate the discomforting experience of inhabiting a liminal or threshold space between life and death. Art therapists, particularly those who adopt a psychodynamic perspective, have interpreted the artwork of individuals with cancer as rich in symbolism (Minar, 1999). Imagery of the damaged body has frequently been expressed in the artwork of people living with cancer, as have themes of hope and reintegration ( [Borgmann, 2002] and [Lynn, 1994]). Whether art-making has these themes when engaged in as a leisure occupation rather than as therapy is uncertain.
Cancer affects many people every year, and few, it seems, have access to art therapy. With better medical treatments, more survive and face the task of coping with the legacy of their diagnosis for many years (Bower et al., 2005). It can be argued therefore that a better understanding of the role of leisure-based art-making in promoting well-being may also help to inform professional interventions and people's own strategies for coping with cancer.
Cancer can be profoundly disruptive of personal and social identity (Carpenter, Brockopp, & Andrykowski, 1999; Mathieson & Stam, 1995). Stressful features of cancer such as pain, potentially arduous and disfiguring treatments, and a future perceived as highly uncertain all tend to challenge the previously taken-for-granted relationship with the self. Many describe cancer as bringing about a profound loss of subjective control. In addition to imposing a cognitive and emotional burden, cancer poses threats to subjective well-being through undermining everyday lifestyle and social relationships. About 40% of people report losing their job or taking early retirement after cancer diagnosis and treatment (Spelten, Spranger, & Verbeek, 2002). Cancer still carries a stigma, and from a sociological view imposes an all-defining “master status” upon the person (Charmaz, 1991; Mathieson & Stam, 1995). The person may yearn to establish a sense of normality and an identity that is not totally defined by cancer (Lam & Fielding, 2003; Landmark & Wahl, 2002; Shannon & Shaw, 2005).
Some people respond to cancer by placing more emphasis on personally enriching activities (Arman & Rehnsfeldt, 2002). Shannon and Shaw (2005) found that participants re-appraised their leisure habits, wanting “to be actively living and making the most of life” (p. 207). Such re-appraisal may occur soon after a cancer diagnosis. Landmark and Wahl (2002) interviewed women recently diagnosed with breast cancer who reflected on their need to engage with meaningful activities, to provide evidence of their mental and physical strength, to stay actively engaged in daily life, and to distract their thoughts away from cancer. Similar themes were found in the study of women who took up a sport after breast cancer (Tocher, 2002).
Link, Robbins, Mancuso, and Charlson (2004) found that 11% of participants who tried to control the psychological impact of their cancer in daily life turned to creative activities such as painting and writing. However, they did not examine in depth how such activities enhanced participants’ subjective well-being. Reynolds and Prior (2003) offered some insights into this issue, albeit from interviews with women who were living with both malignant and non-malignant illnesses. They explored the meanings of art-making guided by the principles of interpretative phenomenological analysis (IPA) as described by Smith, Osborn, and Jarman (1999). Participants’ accounts suggested that art-making offered a way of managing many aspects of long-term illness ranging from unpleasant physical symptoms to loss of roles. Immersion in artistic activities helped to ward off cognitive preoccupation with illness. The participants’ accounts did not focus solely upon coping with the restrictions of illness. They also revealed a more positive project of re-engaging with “normal” life. As one participant with cancer explained: “Art blocks out sad thoughts or frightening thoughts and scary bits… but it also moves you on” (Reynolds & Prior, 2003, p. 792). Art-making provided some participants with new relationships and generally restored feelings of competence and self-esteem. Present-moment awareness was enhanced, enriching perceptual experiences. Some appreciated that their illness had catalysed a more positive lifestyle. Of the 35 women participating in the study, six were living with cancer. A more detailed examination of the role of art-making in coping with life-threatening illness was recommended.
This study sought to understand how visualart-making as a leisure activity contributed to the subjective well-being of women who were living with cancer. An inclusive definition of “art-making” was used, to encompass the practice of any form of visualart or craft resulting in a visible end-product, whether at an amateur or advanced level of expertise.
Methods
Methodology
This research aimed to gather rich “insider” descriptions of the meanings of art-making, and was guided by the principles of interpretative phenomenological analysis (IPA), as outlined by Smith et al. (1999). Ethical approval was given by the Research Ethics Committee of the host institution.
Participants
Participants were recruited through invitations placed in national UK arts magazines. Those expressing interest were given full information including the main interview questions prior to giving consent. They were assured of confidentiality and their right to withdraw from the study at any time. In the quotations below, participants are identified by pseudonyms, and their occupations, where distinctive, are slightly masked.
Twelve women participated. The age range was 23–74 years, with the majority aged in their late 40's to 50's. They resided in many areas of England. All were White. Nine had a professional work background but had discontinued regular paid work since becoming ill. The others had mainly been homemakers. Ten disclosed that they were married or living with partners and most of these had adult children living away from home. Participants had all lived with cancer for at least a year, therefore gaining some emotional distance from the initial trauma of diagnosis. Six had been diagnosed with breast cancer and the remaining participants reported other types of cancer. Seven were currently receiving treatment for cancer. Participants varied in time since diagnosis. Five considered that they were facing terminal illness, five expressed varying degrees of uncertainty and two were optimistic about their longer-term health. It was considered acceptable to include women living at different stages of the cancer trajectory in this exploratory study. This is because the stress of cancer is not confined to those engaged in medical treatment. Long after treatment has ended, people report remaining vigilant and fearful about recurrence or metastasis (Bower et al., 2005).
Procedure
Semi-structured interviews lasted between 1 and 2 h. All were carried out by the first author, audiotaped and fully transcribed. Ten interviews were carried out in participants’ homes, and two were conducted by telephone according to participants’ preferences. Participants reflected on their experience of cancer, initial reasons for taking up art-making, and the ways in which visualart-making as a leisure occupation contributed to their subjective well-being. In relation to the last topic, questions included:
1. Can you describe what is satisfying about creative activity?
2. Do you think that your artwork has helped you to express your feelings about your illness—or not?
3. In what ways has your artistic work helped you to manage/live with your health problems?
These questions were not asked in a rigid way but were modified and probed, as needed, to guide a flowing conversation.
Data analysis
Data analysis was carried out jointly with the second author, focusing on the verbal meanings of engaging in the process of art-making (rather than interpreting the content or imagery of the artwork). The authors spent a considerable period of immersion in the transcripts. Based on the guidelines for IPA (Smith et al., 1999), one lengthy interview transcript was initially coded for micro-themes. This list expanded as subsequent transcripts were analysed. Gradually, the “micro-themes” initially identified were clustered into larger meaningful themes as the process of analysis unfolded, aided by concepts recorded in a memo book and discussion between the authors. The focus of this paper is on the major recurring themes in participants’ accounts. An audit trail supported the confirmability, and hence rigour, of the analysis.
Findings
Summarising the stressful aspects of cancer
Before examining the contribution of art-making to subjective well-being, it is important to acknowledge that participants had faced many cancer-related problems. Indeed, they referred to most of the stressful experiences that have been reported in previous qualitative research (such as those presented by Mathieson & Stam, 1995). There is insufficient space to give details but their descriptions included the initial shock of diagnosis, the discomforts of treatment, feeling out of control, fears for the future, negative changes in some of their social relationships, early retirement from work, and loss of self or identity. One participant (Jean, aged 50) summed up her difficulties after diagnosis of breast cancer: “That was a horrendous year. Mastectomy, chemotherapy, radiotherapy… that was months of treatment. At that stage I was feeling really battered.”
Patterns of art-making: brief outline
Most participants had engaged in considerable lifestyle change since the beginnings of their illness. Half of the sample had taken up art after their cancer diagnosis, generally during the crisis of initial treatment; five of the others had substantially intensified their involvement after their diagnosis. Only the youngest participant, a student aged 23 years, had enjoyed art as a leisure activity quite steadily throughout her life. Participants engaged in many different types of visualart, including textile art, card-making, collage, pottery, watercolour and acrylic painting. Some of the artwork was freely self-expressive (for example, creating exploratory images in paints, or constructing fragile textile hangings); much was created to be aesthetically pleasing to self and others (including samplers, tapestry cushion covers, hand-made cards, and paintings of floral arrangements, animals and landscapes).
Art and subjective well-being: themes within the interview data
Whilst the rich interview data provided testament to a wide variety of subjective benefits of engaging in art after diagnosis of cancer, these were clustered into four distinct themes, reported in Table 1. One theme (symbolic self-expression) was only seen in the interview data of five participants. However, because of its subjective importance for this group it is included here. The remaining three major themes were present in all of the interview data.
Table 1. How did art-making enhance participants’ subjective well-being after a cancer diagnosis?
1. Art symbolised the cancer experience
Fear and grief
Hope and strength
2. Art-making focused attention on life experiences other than cancer
Encouraged an outwards focus
Relieved worry, pain, sleeplessness
Provided a future hopeful orientation
3. Art-making maintained personal identity and self-worth
Provided experiences of challenge and achievement
Promoted learning and self-development
Enabled expression of self-defining interests
Increased subjective control
4. Art-making preserved an “able” social identity
Offered a mutual social interest unrelated to cancer
Provided a non-cancer source of social identity
Relieved family from concerns about well-being
Enabled reciprocal care through hand-made gifts
Provided a legacy or memorial
Table options
Although presented in linear fashion, it is important to emphasise that the subjective benefits of art-making were highly interconnected in participants’ accounts. For example, with the achievement of better self-worth, participants described feeling more confident in their social relationships. Reciprocating care (through hand-made gifts, for example) had individual and social benefits, in building self-esteem, and helping to ward off others’ pity. When participants focused attention upon planning or creating artwork rather than dwelling on their worries about cancer, they re-connected with a familiar self-image as an effective, capable person. Participants also felt that their social interactions were normalised rather than dominated by the stigma of cancer and “cancer talk.” There did not seem to be any clear differences between the accounts of those who intensified their involvement in art-making and those who took up new artistic pursuits following their diagnosis.
Art symbolised the cancer experience
Five of the 12 participants described some of their art-making as enabling symbolic self-expression. However, only one or two pieces of their artwork had this function. Four of the five referred to a “chemotherapy piece,” which generally had a symbolism that was perceived only at a later stage. Some of these pieces were emotionally disturbing. One participant (Carol, aged 57, with breast cancer) recollected her first piece of art: “I did a sort of collage… a deep dark ravine, all greens and dark colours… the dark ravine was obviously where I was… that was the only one that seemed to be symbolic. And I threw it away.”
Symbolic expression was not confined to fear or grief. Another participant, Jean, interpreted some of her early artwork as a permanent witness to her psychological strength during treatment for breast cancer: “[The art] was something I could manage, I was sure to get it right, right enough to say ‘I’ve done that, that's fine, I’ll frame it.’ It stands for something in my life now… I keep it somewhere and I think it says ‘that's a stage in my life that I went through.”’
Although infrequently constructed, symbolic pieces appeared to have great psychological significance, enabling participants to express feelings about the cancer, including hopes and vulnerability, that were almost out of reach of conscious awareness at that particular time.
Art-making focused attention on life experiences other than cancer
Art-making was highly valued by all participants for providing a strong cognitive and emotional involvement with aspects of life other than cancer, thereby relieving some of the stress associated with the condition. Deep immersion in art-making was described as reducing perceptions of pain, alleviating worry and preoccupations with cancer. For two participants whose pain was difficult to control, art-making helped participants to cope with long sleepless nights. Many participants considered that their time-consuming projects had a wider benefit, in helping them to retain positive plans and hope for the future, even within the context of life-limiting disease. The length of experience with the visual medium, or level of skill, did not seem relevant to these self-reports. These different sub-themes will be further illustrated with quotations.
Many participants spent a substantial part of the interview reflecting on their inspirations for artwork, including the work of recognised artists, and the natural and man-made environment. This emphasised their outwards focus. For example, Marie (aged 55, with a life-limiting blood condition) constructed fragile textiles out of silk thread that she dyed herself. She explained how was one piece was developed “from a combination of inspirations. I went to Venice and was totally struck by the verdigris on the bellies of the horses in St. Mark's Square… the fabulous, fabulous greeny gold rivulets going down the belly of the horse… The other thing that struck me was all sorts of old doors around the fish market. They were kind of really beaten up… it was so textural.” With this degree of attention to her surroundings, Marie felt able to give less attention to her life-limiting illness. She explained: “I suppose my whole approach to the whole problem with my health is put it on one side and do the best I can with it. Otherwise, it can consume you. And it will.” This strategy of re-focusing did not seem to reflect denial or other defensive strategies, as she was quite open about her poor health prospects. Rather, re-focusing outwards enhanced the quality of subjective experience, maintained engagement in a world of “health,” and reduced unproductive and emotionally debilitating rumination upon illness.
Many other participants referred to their outward focus on art-making and the benefits of this strategy for living with cancer. One participant (Carol, 57 with breast cancer and lung disease) explained: “Four or five hours can go by without your realising. It's wonderful. You thought of nothing else. I mean that's the beauty of it”. Such complete mental absorption was seen as helpful for managing worry as well as the discomforts of treatment and illness, and was reported by both experienced and novice practitioners.
As well as reducing preoccupation with illness, art (including the focus on outside inspirations, design, texture, colour and the process of making) offered a coping strategy for pain, nausea and sleeplessness. Several had discovered that the more they focused upon their bodies, the more unpleasant their symptoms became. They had learned to break what they regarded as a vicious circle. One participant described coping with pain during sleepless nights: “It might sound strange, but it [art] is a way of… not thinking of the pain. Or at least you’re thinking of something to take the pain away, rather than the pain itself. So you’re not getting into a vicious circle of saying, ‘I’ve got pain, I must be getting worse’ and then the next minute it is worse.”
In most cases, participants’ outward focus also included planning many future art projects. This strategy helped to ward off negative preoccupations with mortality, and maintained hope. Jessica (47, with breast cancer) was perhaps the most articulate about this strategy: “I’ve got notebooks of things that I want to do. If I lived until I was 107, I wouldn’t finish everything and I think that's a good thing. I mean especially when you’re looking at a shorter life span, rather than concentrate on that, you think, I’ve got to get this finished, I’ve got to do this and that, I think that helps a lot.” Louise, aged 66 and currently receiving treatment for breast cancer, was also adamant about the subjective importance of having future goals: “While you’re doing something, you’re not dying. Literally.”
Art-making maintained personal identity and self-worth
Physical and functional losses have deleterious effects on self-worth and identity, and so do social role changes. Participants described many ways in which art-making was helping them to maintain or restore a positive sense of identity, and to resist being overly defined by cancer. Feelings of accomplishment through meeting the challenges involved, ongoing learning and personal growth, experiencing continuity through involvement in long-standing interests and enhanced choice and control were all important benefits derived from creative activity that helped to sustain identity and thereby helped participants to live more positively with cancer.
Most participants used the word “challenge” at least once during the interview. One participant (Dorothy, aged 74), who was paraplegic from a spinal tumour, welcomed the challenges inherent in her art-making, explaining: “I haven’t got many challenges, so doing a difficult piece of [art] work is helpful.” Another (Marie) enrolled on a City and Guilds textile art course after her early retirement. “It was a massive learning curve, but very challenging, which was just great… You know, unless you shift your comfort zone, you just carry on being what you are.” She considered that her new-found lifestyle helped to provide the level of challenge and on-going development that she used to enjoy in her former academic work.
Participants did not necessarily require the challenge of an advanced course to feel achievement. For example, Louise (aged 66, with breast cancer) enjoyed making hand-made cards. “It's a sense of achievement, you know. It beats anything. For me, anyway.” That this could be helpful for living with cancer became very clear later in her interview: “I don’t see the sense of sort of going to bed and waiting to die, or sitting in a chair and waiting. I would rather be doing something that I enjoyed and have something at the end to show for it… It's the sense of achievement more than anything.”
During interviews, many participants focused at length upon their inspirations, courses, internet contacts and other sources of learning and skill development. Participants emphasised the enjoyment and personal growth associated with gaining new skills. They referred to themselves as “blossoming” and “having something to knock me off course.” As well as developing new skills, art during leisure time also afforded opportunities for participants to express some of their pre-cancer interests, even within a context of diminishing physical function. This outcome also can be interpreted as helping to maintain personal, or biographical, continuity. For example, Eve (48, with metastasised breast cancer) emphasised how continuity of creative interests contributed to “normality” within her life, and hence subjective well-being: “Well, I think really it's [important] doing normal things… Obviously with all these sort of toxic drugs some days are less normal than others and some days are more normal than others… I think really that by doing these things [arts and crafts], I’m doing the things that I always did do, so those always were my hobbies and I suppose I’ve just added a new interest or, like, taken the interest into a different dimension.”
In many ways, participants had suffered a profound loss of control over their lives. Some recounted difficulties in gaining a correct diagnosis, and their sense of vulnerability in entrusting their lives to medical practitioners. Treatments sometimes had unexpected side-effects, and the progress of the illness continued, for many, to be uncertain. As disabled people, some faced barriers to accessing taken-for-granted resources such as transport and so on. Whilst many difficulties remained in relation to cancer treatment and prognosis, art-making was experienced as a haven of choice and control in everyday life. Marie made this point clearly: “It is quite hard to discover that you’re not going to live forever and your body's gone a bit cranky… Having a disorder of some sort makes you very aware of your own vulnerability, you know. You used to be immortal and now you’re not, and if you do creative things, they’re entirely within your control and it gives you a sense of something that you can do something about. Because it's coming from within you and then you’re expressing it outwardly and you know, you’re not vulnerable. You’re growing a little bit.”
Another participant (Jill, aged 50, who had finished treatment for a pituitary tumour) agreed that art-making gave her more power in relation to her cancer: “I don’t feel I’ve been defeated… if I can do things like this.”
Art-making preserved an ‘able’ social identity
As discussed in introduction, cancer tends to have a powerful “master status” that can radically re-shape social relationships and interactions. Several participants had suffered social difficulties as a result of their illness. Louise recounted: “That's the saddest part about it. I had a friend, a really close friend, we worked together for years… I tried to meet up with her but as soon as I mentioned the word that I’d got cancer, I haven’t heard from her anymore. I’ve not heard from her since that day.”
Jessica's experience was similar: “I’ve known people hide… because they don’t know what to say to you and you get comments. Someone came up to me and said, ‘Oh, if I had to have a mastectomy, I’d kill myself.’ Very helpful! And what I actually said is, ‘Oh, it's a good job I don’t feel like that, isn’t it?’ But people are ridiculous about what they say and I think that's another reason for doing something that they can talk to you about, that's not cancer, because people are scared of cancer, aren’t they?”
Art-making provided a shared interest with others that had nothing to do with cancer. With the cancer rendered less dominant, a better quality of social life was achieved, and stigma was resisted. Participants felt able to retain active roles in their social circles rather than feeling totally defined by the cancer diagnosis or pitied as a “tragic victim.”
Art-making also provided a shared focus of social activity for many participants. Those who joined courses or set up arts and crafts groups of their own (e.g. for painting, cross-stitch, patchwork, or charity fund-raising) belonged on their own terms, rather than being defined by their illness. Jessica said: “I think one of the biggest factors in that is that your disability or your ill health, or whatever, isn’t the most important thing in your life. I don’t think about it when I’m out and about at all. I keep that for family. I think it's boring listening to someone else's health problems and I think by having the art and the craft and everything, it gives you that interest that you can talk about. I mean what do people talk about? They talk about their work, their family, their hobbies, their health.”
Some participants regarded their art-making as helping family and friends to feel less concern about their well-being. For example, Jean described wishing to protect her young adult children from distress by having a positive focus in her life during treatment for breast cancer: “I’d still got three kids at home, early 20's, old enough to be helpful but in other ways I needed to protect them a bit. I wanted something so they’d feel their mum was riding above this… so I joined the Embroiders’ Guild.”
Eve described sometimes sparing her friends details about her breast cancer treatment. With her hand-made cards, she took care to avoid focusing on her illness or treatment: “If you sometimes include nice photos or you send a [pink] ribbon or whatever and maybe that's not so depressing for the people receiving. Better than saying ‘Oh, this week I’ve been to the hospital again and I’ve had another scan’… Because people have been very good and they do want to know what's going on, but I don’t always want to be the bearer of bad tidings. It's nice sometimes to send something just a bit more cheerful.” She not only exercised control over disclosure of her illness; she also maintained her status as an equal partner in her social relationships, giving as well as receiving emotional care.
Making hand-made gifts was popular among the participants. As well as spending enjoyable time in making the gift, the act of giving also contributed to maintaining or restoring the status of the person with cancer. Gifts helped to reciprocate care. The youngest participant (Susie, aged 23, who was receiving treatment for a brain tumour) explained: “I like to make things for people who have done stuff for me or looked after me or been kind to me.” Participants appreciated that hand-made gifts also encouraged others focus on their positive talents, not simply their cancer diagnosis. Gifts were sometimes given as a strategy to ward off pity and to emphasise personhood instead of cancer. For example, one participant (Carol) returned to work after weeks of chemotherapy with a set of embroidered waistcoats that she had made for all of her colleagues. Talk in the office then centred on the embroidery rather than illness.
For some participants with life-limiting illness, gifts were viewed as a legacy, helping to preserve their memory. Louise thought that she was unlikely to live long enough to see her young grand-daughters marry, yet she described embroidering wedding presents, “something to remember me by.”
Discussion
None of the participants ascribed any “mystical” healing powers to their creative activities. Nor did much of the art have a symbolic function, according to their accounts. Although art therapists (such as [Borgmann, 2002] and [Minar, 1999]) have explored the symbolism within the art of clients with cancer, art as a leisure activity generally did not have this purpose, according to participants. With the exception of a few “chemotherapy pieces,” art was rarely experienced as creating or expressing any negative emotion. Instead, it provided important sources of subjective well-being. Participants emphasised that they gained a sense of vitality from ongoing engagement with the beauty and creative inspirations of the physical environment; participation in active planning and problem-solving; and from observing development of their own artistic skills. Art-making also offered opportunities to re-focus attention away from distressing symptoms. Through their art, participants could retain aspects of their familiar personal and social identities, maintaining personal continuity, control and reciprocal relationships, in face of the physically and social disruptive nature of cancer.
The themes that emerged were broadly consistent with the themes derived from a sample of people living with chronic illnesses of different types (Reynolds & Prior, 2003). However, the intensity of emotional turmoil, awareness of limited time, and degree of physical pain among participants with cancer may have been responsible for the greater emphasis reported here on the value of art-making for actively managing the negative aspects of illness. Compared with the previous study, this sample of participants with cancer made fewer references to art as a catalyst for other positive lifestyle choices (such as travel, exhibitions, or courses). Art-making provided opportunities to experience continuity, agency and self-esteem, all recognised as defining features of identity which are readily threatened by cancer (Gillies & Johnston, 2004). Art-making also helped participants to move beyond preoccupations with cancer and mortality. It offered a re-vitalising experience, preserving a healthy and vigorous engagement with life. For at least short periods, participants were able to escape from the liminal zone between life and death that has been described by Sibbett (2005). Participants’ length of artistic experience and level of skill were not clearly related to the benefits that they identified in their art-making, although it must be acknowledged that even those who had taken up art since diagnosis had enjoyed sufficient time to acquire valued skills, and to produce work that they found pleasing.
Previous research (such as Gall & Cornblat, 2002) has found that social support and spiritual beliefs provide resources for living with cancer. This study provides fresh insights by revealing how a personally meaningful leisure activity such as art-making helps to preserve a familiar, “normal” and positive identity during cancer and a sense of re-engagement with life. Findings are consistent with previously reviewed evidence about people's needs to protect their identities from the labelling that is so readily imposed by cancer.
The findings support previous qualitative research studies (Luker, Beaver, Leinster, & Owens, 1996; Luoma & Hakamies-Blomqvist, 2004) that have documented how some people cope with cancer by getting on with their lives (“living well”) rather than dwelling on their illness. However, Luoma and Hakamies-Blomqvist (2004) interpreted participants’ desire to focus on experiences other than cancer as a form of conscious denial or reality distortion. They used this term to describe participants’ strategy of trying not to think about their illness, instead seeking absorbing pastimes such as watching films. Yet denial occurs when people reduce their anxieties by refusing, consciously or unconsciously, to accept or believe a threatening event. In the current study, there was little evidence of denial, as participants were quite open about their fears for the future and they talked quite explicitly about their harrowing experiences of diagnosis and treatment. Yet when engaged in creative activity, they experienced an opportunity to withdraw attention from their cancer. Such a strategy can be understood as emotion-focused in relieving participants from worry and stress at least temporarily during creative activity, or as problem-focused in managing the intrusive cognitive burden of cancer. This strategy of deliberate immersion in activity may be a form of self-distraction, a strategy that was noted by Kershaw, Northouse, Kritpracha, Schafenacker, and Mood (2004) to be unrelated either to avoidant or active coping. Its relationship with subjective well-being requires further examination.
Previous research (by Tocher, 2002) has focused on the meanings of a physically active leisure pursuit for breast cancer survivors. In this study, participants’ accounts of art-making emphasised certain similar psychological and social benefits. These included enhanced control, the experience of living more intensely in the present moment, a commitment to future projects and making use of precious time, as well as social relationships built upon shared interests other than cancer.
Participants, through their art-making, appeared to be practising a form of resistance to the all-defining power of cancer. Narratives have been understood as a means of resistance to the life disruption that cancer brings about (Dreifuss-Kattan, 1990; Mathieson & Stam, 1995). This study seems to demonstrate many ways in which visualart-making confers psychological resistance to the potentially overwhelming psychological and social power of this condition. Other studies have emphasised that cancer disrupts identity (Gillies & Johnston, 2004; Mathieson & Stam, 1995). This study has revealed that leisure-based art-making can offer a powerful means of maintaining identity and subjective well-being during and after cancer treatment.
From a critical perspective, this qualitative study has a number of limitations. In interview-based research, one may take a “realist” view that participants are offering transparent windows on to their thoughts and feelings, and this assumption tends to be made by those conducting IPA studies (Smith et al., 1999). A more critical position is that participants may be providing “heroic” narratives to enhance their self-presentation, a strategy that is understandable given that people with cancer are bombarded with exhortations to be “positive” (Wilkinson & Kitzinger, 2000). Nevertheless, we argue that the interviewees, in describing the meanings of art-making, were not engaged in exaggeratedly positive self-presentation. They clearly engaged in art-making outside of the interview, as demonstrated by their artwork in the home, and had certain reasons for choosing creative activity, even if they could not fully articulate their motives in the interview. Also, they were quite open about their difficulties in relation to cancer and did not seem to be in denial. Interviews embraced both negative and positive experiences; participants’ narratives were not therefore artificially “heroic.”
The sample size was small though typical for a phenomenological study using IPA, but the generalisability of the findings cannot be assumed, as the sample was restricted in social and economic terms. Most had professional careers prior to their illnesses and seemed to be well supported by partners and families. These psychosocial resources may have promoted positive attitudes to living with cancer, and assisted their immersion in artistic pursuits. The sample was diverse in terms of diagnosis. A few regarded themselves as cancer “survivors”; some were uncertain about future health, and some regarded themselves as terminally ill. For an exploratory study this was considered helpful, but further research should compare and contrast the meanings of leisure art-making for participants in various stages of the cancer trajectory.
Conclusions
This phenomenological study sought to understand how visualart-making, as a leisure pursuit rather than as formal psychotherapy, contributed to the subjective well-being of people living with cancer. Participants described many stressful experiences associated with cancer and its treatment, which prompted a search for meaningful activity to help relieve stress. Emotional turmoil and/or early retirement from work prompted most participants to initiate or intensify an interest in art-making after diagnosis. For a minority, a few pieces of artwork enabled expression of feelings about cancer in symbolic or implicit terms, especially in the early stages after initial diagnosis or recurrence, and this was thought to be an emotionally fraught yet valuable experience. Art-making was also valued by participants for encouraging a positive outwards focus, and for limiting their preoccupation with cancer-related fears and physical discomfort. Art-making helped to support continuity of personal identity, an “able” self-image and equality within social relationships, thereby counteracting the ‘master status’ that cancer tends to confer.
There are several implications for art therapists. Firstly, cancer creates long-term stress, and art-making later in the cancer trajectory may assist some people to reconnect with aspects of their former identity, to resist the ‘master status’ that cancer can exert, and to experience “vital engagement” with life (Nakamura & Csikszentmihalyi, 2002). However, it must be acknowledged that personal interests and wider psychosocial resources will inevitably influence which leisure occupations are meaningful to individuals. Another implication from this study is that not all of the therapeutic potential of art resides in its symbolic function (although some individuals do need to engage in symbolic self-expression at least in the early stages of cancer). It is possible, of course, that individuals cannot readily use art to explore deeper feelings symbolically, without the support and containment of a therapist. Yet participants suggested that art-making as a leisure activity promotes subjective well-being in many other ways. Although published studies of artwork by cancer patients emphasise the exploration of darker themes, the sense of re-integration that can be achieved from creating aesthetically pleasing artwork should not be discounted.
Participants continued to face distressing experiences in relation to their illness, yet art-making during leisure time offered an important resource for regaining subjective well-being. Helen (50 years old, who had completed treatment for non-Hodgkins lymphoma), explained: “You eventually carry on but in a way, the living afterwards is more of a challenge than actually just getting through your treatment—although you don’t realise it at the time. And actually to live it positively.”
• Frances Reynolds, PhD , ,
• Kee Hean Lim, MSc
• School of Health Sciences and Social Care, Mary Seacole Building, Brunel University, Uxbridge, Middlesex UB8 3PH, United Kingdom
• http://dx.doi.org/10.1016/j.aip.2006.09.005, How to Cite or Link Using DOI
• Permissions & Reprints
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Abstract
This qualitative study examined accounts of women diagnosed with cancer who engaged regularly in art as a leisure activity. The purpose of the study was to explore participants’ views about the contribution of art-making to their subjective well-being in the context of living with cancer. The study was based on the principles of interpretative phenomenological analysis (IPA). A convenience sample of 12 women aged between 23 and 74 years participated in semi-structured interviews, and their accounts were analysed thematically. Participants described a range of ongoing difficulties associated with cancer such as fear for the future, pain, sleeplessness, role loss, activity restriction, reduced self-confidence and altered social relationships. They described art-making as supporting subjective well-being in four major ways. Creative activities helped participants to focus outwards on positive life experiences relieving debilitating preoccupation with illness. Art-making enhanced self-worth and identity through providing opportunities to demonstrate continuity, challenge and achievement. It also enabled participants to maintain a social identity that resisted definition by cancer. For a minority, art enabled symbolic expression of feelings, especially during chemotherapy. The findings supplement previous case studies and suggest that meaningful creative activity may provide psychosocial resources for living with cancer.
Keywords
• Cancer;
• Well-being;
• Identity;
• Art;
• Creativity;
• Leisure
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Introduction
This study explored the meanings of leisure-based art-making for women who were living with cancer. It is increasingly recognised that many people with cancer need to draw upon psychosocial resources such as positive attitudes, spiritual beliefs, information and support in order to cope with their condition (Dunn, Steginga, Rosoman, & Millichap, 2003; Jenkins & Pargament, 1995). Creative art-making during leisure time may offer another resource. Some people identify their diagnosis of cancer as a “wake-up call” to be self-expressive, and turn to art and other creative activities (Predeger, 1996). Most studies of cancer patients undertaking art therapy have focused upon those who are in the relatively early stages after diagnosis, when fear and grief may be particularly intense. Participants at this stage of the cancer trajectory seem to use art to communicate feelings of anxiety, anger and body estrangement, which are difficult to put into words ( [Borgmann, 2002] and [Lynn, 1994]). Sibbett (2005) has argued that the creative process may also help those who live with cancer to tolerate the discomforting experience of inhabiting a liminal or threshold space between life and death. Art therapists, particularly those who adopt a psychodynamic perspective, have interpreted the artwork of individuals with cancer as rich in symbolism (Minar, 1999). Imagery of the damaged body has frequently been expressed in the artwork of people living with cancer, as have themes of hope and reintegration ( [Borgmann, 2002] and [Lynn, 1994]). Whether art-making has these themes when engaged in as a leisure occupation rather than as therapy is uncertain.
Cancer affects many people every year, and few, it seems, have access to art therapy. With better medical treatments, more survive and face the task of coping with the legacy of their diagnosis for many years (Bower et al., 2005). It can be argued therefore that a better understanding of the role of leisure-based art-making in promoting well-being may also help to inform professional interventions and people's own strategies for coping with cancer.
Cancer can be profoundly disruptive of personal and social identity (Carpenter, Brockopp, & Andrykowski, 1999; Mathieson & Stam, 1995). Stressful features of cancer such as pain, potentially arduous and disfiguring treatments, and a future perceived as highly uncertain all tend to challenge the previously taken-for-granted relationship with the self. Many describe cancer as bringing about a profound loss of subjective control. In addition to imposing a cognitive and emotional burden, cancer poses threats to subjective well-being through undermining everyday lifestyle and social relationships. About 40% of people report losing their job or taking early retirement after cancer diagnosis and treatment (Spelten, Spranger, & Verbeek, 2002). Cancer still carries a stigma, and from a sociological view imposes an all-defining “master status” upon the person (Charmaz, 1991; Mathieson & Stam, 1995). The person may yearn to establish a sense of normality and an identity that is not totally defined by cancer (Lam & Fielding, 2003; Landmark & Wahl, 2002; Shannon & Shaw, 2005).
Some people respond to cancer by placing more emphasis on personally enriching activities (Arman & Rehnsfeldt, 2002). Shannon and Shaw (2005) found that participants re-appraised their leisure habits, wanting “to be actively living and making the most of life” (p. 207). Such re-appraisal may occur soon after a cancer diagnosis. Landmark and Wahl (2002) interviewed women recently diagnosed with breast cancer who reflected on their need to engage with meaningful activities, to provide evidence of their mental and physical strength, to stay actively engaged in daily life, and to distract their thoughts away from cancer. Similar themes were found in the study of women who took up a sport after breast cancer (Tocher, 2002).
Link, Robbins, Mancuso, and Charlson (2004) found that 11% of participants who tried to control the psychological impact of their cancer in daily life turned to creative activities such as painting and writing. However, they did not examine in depth how such activities enhanced participants’ subjective well-being. Reynolds and Prior (2003) offered some insights into this issue, albeit from interviews with women who were living with both malignant and non-malignant illnesses. They explored the meanings of art-making guided by the principles of interpretative phenomenological analysis (IPA) as described by Smith, Osborn, and Jarman (1999). Participants’ accounts suggested that art-making offered a way of managing many aspects of long-term illness ranging from unpleasant physical symptoms to loss of roles. Immersion in artistic activities helped to ward off cognitive preoccupation with illness. The participants’ accounts did not focus solely upon coping with the restrictions of illness. They also revealed a more positive project of re-engaging with “normal” life. As one participant with cancer explained: “Art blocks out sad thoughts or frightening thoughts and scary bits… but it also moves you on” (Reynolds & Prior, 2003, p. 792). Art-making provided some participants with new relationships and generally restored feelings of competence and self-esteem. Present-moment awareness was enhanced, enriching perceptual experiences. Some appreciated that their illness had catalysed a more positive lifestyle. Of the 35 women participating in the study, six were living with cancer. A more detailed examination of the role of art-making in coping with life-threatening illness was recommended.
This study sought to understand how visualart-making as a leisure activity contributed to the subjective well-being of women who were living with cancer. An inclusive definition of “art-making” was used, to encompass the practice of any form of visualart or craft resulting in a visible end-product, whether at an amateur or advanced level of expertise.
Methods
Methodology
This research aimed to gather rich “insider” descriptions of the meanings of art-making, and was guided by the principles of interpretative phenomenological analysis (IPA), as outlined by Smith et al. (1999). Ethical approval was given by the Research Ethics Committee of the host institution.
Participants
Participants were recruited through invitations placed in national UK arts magazines. Those expressing interest were given full information including the main interview questions prior to giving consent. They were assured of confidentiality and their right to withdraw from the study at any time. In the quotations below, participants are identified by pseudonyms, and their occupations, where distinctive, are slightly masked.
Twelve women participated. The age range was 23–74 years, with the majority aged in their late 40's to 50's. They resided in many areas of England. All were White. Nine had a professional work background but had discontinued regular paid work since becoming ill. The others had mainly been homemakers. Ten disclosed that they were married or living with partners and most of these had adult children living away from home. Participants had all lived with cancer for at least a year, therefore gaining some emotional distance from the initial trauma of diagnosis. Six had been diagnosed with breast cancer and the remaining participants reported other types of cancer. Seven were currently receiving treatment for cancer. Participants varied in time since diagnosis. Five considered that they were facing terminal illness, five expressed varying degrees of uncertainty and two were optimistic about their longer-term health. It was considered acceptable to include women living at different stages of the cancer trajectory in this exploratory study. This is because the stress of cancer is not confined to those engaged in medical treatment. Long after treatment has ended, people report remaining vigilant and fearful about recurrence or metastasis (Bower et al., 2005).
Procedure
Semi-structured interviews lasted between 1 and 2 h. All were carried out by the first author, audiotaped and fully transcribed. Ten interviews were carried out in participants’ homes, and two were conducted by telephone according to participants’ preferences. Participants reflected on their experience of cancer, initial reasons for taking up art-making, and the ways in which visualart-making as a leisure occupation contributed to their subjective well-being. In relation to the last topic, questions included:
1. Can you describe what is satisfying about creative activity?
2. Do you think that your artwork has helped you to express your feelings about your illness—or not?
3. In what ways has your artistic work helped you to manage/live with your health problems?
These questions were not asked in a rigid way but were modified and probed, as needed, to guide a flowing conversation.
Data analysis
Data analysis was carried out jointly with the second author, focusing on the verbal meanings of engaging in the process of art-making (rather than interpreting the content or imagery of the artwork). The authors spent a considerable period of immersion in the transcripts. Based on the guidelines for IPA (Smith et al., 1999), one lengthy interview transcript was initially coded for micro-themes. This list expanded as subsequent transcripts were analysed. Gradually, the “micro-themes” initially identified were clustered into larger meaningful themes as the process of analysis unfolded, aided by concepts recorded in a memo book and discussion between the authors. The focus of this paper is on the major recurring themes in participants’ accounts. An audit trail supported the confirmability, and hence rigour, of the analysis.
Findings
Summarising the stressful aspects of cancer
Before examining the contribution of art-making to subjective well-being, it is important to acknowledge that participants had faced many cancer-related problems. Indeed, they referred to most of the stressful experiences that have been reported in previous qualitative research (such as those presented by Mathieson & Stam, 1995). There is insufficient space to give details but their descriptions included the initial shock of diagnosis, the discomforts of treatment, feeling out of control, fears for the future, negative changes in some of their social relationships, early retirement from work, and loss of self or identity. One participant (Jean, aged 50) summed up her difficulties after diagnosis of breast cancer: “That was a horrendous year. Mastectomy, chemotherapy, radiotherapy… that was months of treatment. At that stage I was feeling really battered.”
Patterns of art-making: brief outline
Most participants had engaged in considerable lifestyle change since the beginnings of their illness. Half of the sample had taken up art after their cancer diagnosis, generally during the crisis of initial treatment; five of the others had substantially intensified their involvement after their diagnosis. Only the youngest participant, a student aged 23 years, had enjoyed art as a leisure activity quite steadily throughout her life. Participants engaged in many different types of visualart, including textile art, card-making, collage, pottery, watercolour and acrylic painting. Some of the artwork was freely self-expressive (for example, creating exploratory images in paints, or constructing fragile textile hangings); much was created to be aesthetically pleasing to self and others (including samplers, tapestry cushion covers, hand-made cards, and paintings of floral arrangements, animals and landscapes).
Art and subjective well-being: themes within the interview data
Whilst the rich interview data provided testament to a wide variety of subjective benefits of engaging in art after diagnosis of cancer, these were clustered into four distinct themes, reported in Table 1. One theme (symbolic self-expression) was only seen in the interview data of five participants. However, because of its subjective importance for this group it is included here. The remaining three major themes were present in all of the interview data.
Table 1. How did art-making enhance participants’ subjective well-being after a cancer diagnosis?
1. Art symbolised the cancer experience
Fear and grief
Hope and strength
2. Art-making focused attention on life experiences other than cancer
Encouraged an outwards focus
Relieved worry, pain, sleeplessness
Provided a future hopeful orientation
3. Art-making maintained personal identity and self-worth
Provided experiences of challenge and achievement
Promoted learning and self-development
Enabled expression of self-defining interests
Increased subjective control
4. Art-making preserved an “able” social identity
Offered a mutual social interest unrelated to cancer
Provided a non-cancer source of social identity
Relieved family from concerns about well-being
Enabled reciprocal care through hand-made gifts
Provided a legacy or memorial
Table options
Although presented in linear fashion, it is important to emphasise that the subjective benefits of art-making were highly interconnected in participants’ accounts. For example, with the achievement of better self-worth, participants described feeling more confident in their social relationships. Reciprocating care (through hand-made gifts, for example) had individual and social benefits, in building self-esteem, and helping to ward off others’ pity. When participants focused attention upon planning or creating artwork rather than dwelling on their worries about cancer, they re-connected with a familiar self-image as an effective, capable person. Participants also felt that their social interactions were normalised rather than dominated by the stigma of cancer and “cancer talk.” There did not seem to be any clear differences between the accounts of those who intensified their involvement in art-making and those who took up new artistic pursuits following their diagnosis.
Art symbolised the cancer experience
Five of the 12 participants described some of their art-making as enabling symbolic self-expression. However, only one or two pieces of their artwork had this function. Four of the five referred to a “chemotherapy piece,” which generally had a symbolism that was perceived only at a later stage. Some of these pieces were emotionally disturbing. One participant (Carol, aged 57, with breast cancer) recollected her first piece of art: “I did a sort of collage… a deep dark ravine, all greens and dark colours… the dark ravine was obviously where I was… that was the only one that seemed to be symbolic. And I threw it away.”
Symbolic expression was not confined to fear or grief. Another participant, Jean, interpreted some of her early artwork as a permanent witness to her psychological strength during treatment for breast cancer: “[The art] was something I could manage, I was sure to get it right, right enough to say ‘I’ve done that, that's fine, I’ll frame it.’ It stands for something in my life now… I keep it somewhere and I think it says ‘that's a stage in my life that I went through.”’
Although infrequently constructed, symbolic pieces appeared to have great psychological significance, enabling participants to express feelings about the cancer, including hopes and vulnerability, that were almost out of reach of conscious awareness at that particular time.
Art-making focused attention on life experiences other than cancer
Art-making was highly valued by all participants for providing a strong cognitive and emotional involvement with aspects of life other than cancer, thereby relieving some of the stress associated with the condition. Deep immersion in art-making was described as reducing perceptions of pain, alleviating worry and preoccupations with cancer. For two participants whose pain was difficult to control, art-making helped participants to cope with long sleepless nights. Many participants considered that their time-consuming projects had a wider benefit, in helping them to retain positive plans and hope for the future, even within the context of life-limiting disease. The length of experience with the visual medium, or level of skill, did not seem relevant to these self-reports. These different sub-themes will be further illustrated with quotations.
Many participants spent a substantial part of the interview reflecting on their inspirations for artwork, including the work of recognised artists, and the natural and man-made environment. This emphasised their outwards focus. For example, Marie (aged 55, with a life-limiting blood condition) constructed fragile textiles out of silk thread that she dyed herself. She explained how was one piece was developed “from a combination of inspirations. I went to Venice and was totally struck by the verdigris on the bellies of the horses in St. Mark's Square… the fabulous, fabulous greeny gold rivulets going down the belly of the horse… The other thing that struck me was all sorts of old doors around the fish market. They were kind of really beaten up… it was so textural.” With this degree of attention to her surroundings, Marie felt able to give less attention to her life-limiting illness. She explained: “I suppose my whole approach to the whole problem with my health is put it on one side and do the best I can with it. Otherwise, it can consume you. And it will.” This strategy of re-focusing did not seem to reflect denial or other defensive strategies, as she was quite open about her poor health prospects. Rather, re-focusing outwards enhanced the quality of subjective experience, maintained engagement in a world of “health,” and reduced unproductive and emotionally debilitating rumination upon illness.
Many other participants referred to their outward focus on art-making and the benefits of this strategy for living with cancer. One participant (Carol, 57 with breast cancer and lung disease) explained: “Four or five hours can go by without your realising. It's wonderful. You thought of nothing else. I mean that's the beauty of it”. Such complete mental absorption was seen as helpful for managing worry as well as the discomforts of treatment and illness, and was reported by both experienced and novice practitioners.
As well as reducing preoccupation with illness, art (including the focus on outside inspirations, design, texture, colour and the process of making) offered a coping strategy for pain, nausea and sleeplessness. Several had discovered that the more they focused upon their bodies, the more unpleasant their symptoms became. They had learned to break what they regarded as a vicious circle. One participant described coping with pain during sleepless nights: “It might sound strange, but it [art] is a way of… not thinking of the pain. Or at least you’re thinking of something to take the pain away, rather than the pain itself. So you’re not getting into a vicious circle of saying, ‘I’ve got pain, I must be getting worse’ and then the next minute it is worse.”
In most cases, participants’ outward focus also included planning many future art projects. This strategy helped to ward off negative preoccupations with mortality, and maintained hope. Jessica (47, with breast cancer) was perhaps the most articulate about this strategy: “I’ve got notebooks of things that I want to do. If I lived until I was 107, I wouldn’t finish everything and I think that's a good thing. I mean especially when you’re looking at a shorter life span, rather than concentrate on that, you think, I’ve got to get this finished, I’ve got to do this and that, I think that helps a lot.” Louise, aged 66 and currently receiving treatment for breast cancer, was also adamant about the subjective importance of having future goals: “While you’re doing something, you’re not dying. Literally.”
Art-making maintained personal identity and self-worth
Physical and functional losses have deleterious effects on self-worth and identity, and so do social role changes. Participants described many ways in which art-making was helping them to maintain or restore a positive sense of identity, and to resist being overly defined by cancer. Feelings of accomplishment through meeting the challenges involved, ongoing learning and personal growth, experiencing continuity through involvement in long-standing interests and enhanced choice and control were all important benefits derived from creative activity that helped to sustain identity and thereby helped participants to live more positively with cancer.
Most participants used the word “challenge” at least once during the interview. One participant (Dorothy, aged 74), who was paraplegic from a spinal tumour, welcomed the challenges inherent in her art-making, explaining: “I haven’t got many challenges, so doing a difficult piece of [art] work is helpful.” Another (Marie) enrolled on a City and Guilds textile art course after her early retirement. “It was a massive learning curve, but very challenging, which was just great… You know, unless you shift your comfort zone, you just carry on being what you are.” She considered that her new-found lifestyle helped to provide the level of challenge and on-going development that she used to enjoy in her former academic work.
Participants did not necessarily require the challenge of an advanced course to feel achievement. For example, Louise (aged 66, with breast cancer) enjoyed making hand-made cards. “It's a sense of achievement, you know. It beats anything. For me, anyway.” That this could be helpful for living with cancer became very clear later in her interview: “I don’t see the sense of sort of going to bed and waiting to die, or sitting in a chair and waiting. I would rather be doing something that I enjoyed and have something at the end to show for it… It's the sense of achievement more than anything.”
During interviews, many participants focused at length upon their inspirations, courses, internet contacts and other sources of learning and skill development. Participants emphasised the enjoyment and personal growth associated with gaining new skills. They referred to themselves as “blossoming” and “having something to knock me off course.” As well as developing new skills, art during leisure time also afforded opportunities for participants to express some of their pre-cancer interests, even within a context of diminishing physical function. This outcome also can be interpreted as helping to maintain personal, or biographical, continuity. For example, Eve (48, with metastasised breast cancer) emphasised how continuity of creative interests contributed to “normality” within her life, and hence subjective well-being: “Well, I think really it's [important] doing normal things… Obviously with all these sort of toxic drugs some days are less normal than others and some days are more normal than others… I think really that by doing these things [arts and crafts], I’m doing the things that I always did do, so those always were my hobbies and I suppose I’ve just added a new interest or, like, taken the interest into a different dimension.”
In many ways, participants had suffered a profound loss of control over their lives. Some recounted difficulties in gaining a correct diagnosis, and their sense of vulnerability in entrusting their lives to medical practitioners. Treatments sometimes had unexpected side-effects, and the progress of the illness continued, for many, to be uncertain. As disabled people, some faced barriers to accessing taken-for-granted resources such as transport and so on. Whilst many difficulties remained in relation to cancer treatment and prognosis, art-making was experienced as a haven of choice and control in everyday life. Marie made this point clearly: “It is quite hard to discover that you’re not going to live forever and your body's gone a bit cranky… Having a disorder of some sort makes you very aware of your own vulnerability, you know. You used to be immortal and now you’re not, and if you do creative things, they’re entirely within your control and it gives you a sense of something that you can do something about. Because it's coming from within you and then you’re expressing it outwardly and you know, you’re not vulnerable. You’re growing a little bit.”
Another participant (Jill, aged 50, who had finished treatment for a pituitary tumour) agreed that art-making gave her more power in relation to her cancer: “I don’t feel I’ve been defeated… if I can do things like this.”
Art-making preserved an ‘able’ social identity
As discussed in introduction, cancer tends to have a powerful “master status” that can radically re-shape social relationships and interactions. Several participants had suffered social difficulties as a result of their illness. Louise recounted: “That's the saddest part about it. I had a friend, a really close friend, we worked together for years… I tried to meet up with her but as soon as I mentioned the word that I’d got cancer, I haven’t heard from her anymore. I’ve not heard from her since that day.”
Jessica's experience was similar: “I’ve known people hide… because they don’t know what to say to you and you get comments. Someone came up to me and said, ‘Oh, if I had to have a mastectomy, I’d kill myself.’ Very helpful! And what I actually said is, ‘Oh, it's a good job I don’t feel like that, isn’t it?’ But people are ridiculous about what they say and I think that's another reason for doing something that they can talk to you about, that's not cancer, because people are scared of cancer, aren’t they?”
Art-making provided a shared interest with others that had nothing to do with cancer. With the cancer rendered less dominant, a better quality of social life was achieved, and stigma was resisted. Participants felt able to retain active roles in their social circles rather than feeling totally defined by the cancer diagnosis or pitied as a “tragic victim.”
Art-making also provided a shared focus of social activity for many participants. Those who joined courses or set up arts and crafts groups of their own (e.g. for painting, cross-stitch, patchwork, or charity fund-raising) belonged on their own terms, rather than being defined by their illness. Jessica said: “I think one of the biggest factors in that is that your disability or your ill health, or whatever, isn’t the most important thing in your life. I don’t think about it when I’m out and about at all. I keep that for family. I think it's boring listening to someone else's health problems and I think by having the art and the craft and everything, it gives you that interest that you can talk about. I mean what do people talk about? They talk about their work, their family, their hobbies, their health.”
Some participants regarded their art-making as helping family and friends to feel less concern about their well-being. For example, Jean described wishing to protect her young adult children from distress by having a positive focus in her life during treatment for breast cancer: “I’d still got three kids at home, early 20's, old enough to be helpful but in other ways I needed to protect them a bit. I wanted something so they’d feel their mum was riding above this… so I joined the Embroiders’ Guild.”
Eve described sometimes sparing her friends details about her breast cancer treatment. With her hand-made cards, she took care to avoid focusing on her illness or treatment: “If you sometimes include nice photos or you send a [pink] ribbon or whatever and maybe that's not so depressing for the people receiving. Better than saying ‘Oh, this week I’ve been to the hospital again and I’ve had another scan’… Because people have been very good and they do want to know what's going on, but I don’t always want to be the bearer of bad tidings. It's nice sometimes to send something just a bit more cheerful.” She not only exercised control over disclosure of her illness; she also maintained her status as an equal partner in her social relationships, giving as well as receiving emotional care.
Making hand-made gifts was popular among the participants. As well as spending enjoyable time in making the gift, the act of giving also contributed to maintaining or restoring the status of the person with cancer. Gifts helped to reciprocate care. The youngest participant (Susie, aged 23, who was receiving treatment for a brain tumour) explained: “I like to make things for people who have done stuff for me or looked after me or been kind to me.” Participants appreciated that hand-made gifts also encouraged others focus on their positive talents, not simply their cancer diagnosis. Gifts were sometimes given as a strategy to ward off pity and to emphasise personhood instead of cancer. For example, one participant (Carol) returned to work after weeks of chemotherapy with a set of embroidered waistcoats that she had made for all of her colleagues. Talk in the office then centred on the embroidery rather than illness.
For some participants with life-limiting illness, gifts were viewed as a legacy, helping to preserve their memory. Louise thought that she was unlikely to live long enough to see her young grand-daughters marry, yet she described embroidering wedding presents, “something to remember me by.”
Discussion
None of the participants ascribed any “mystical” healing powers to their creative activities. Nor did much of the art have a symbolic function, according to their accounts. Although art therapists (such as [Borgmann, 2002] and [Minar, 1999]) have explored the symbolism within the art of clients with cancer, art as a leisure activity generally did not have this purpose, according to participants. With the exception of a few “chemotherapy pieces,” art was rarely experienced as creating or expressing any negative emotion. Instead, it provided important sources of subjective well-being. Participants emphasised that they gained a sense of vitality from ongoing engagement with the beauty and creative inspirations of the physical environment; participation in active planning and problem-solving; and from observing development of their own artistic skills. Art-making also offered opportunities to re-focus attention away from distressing symptoms. Through their art, participants could retain aspects of their familiar personal and social identities, maintaining personal continuity, control and reciprocal relationships, in face of the physically and social disruptive nature of cancer.
The themes that emerged were broadly consistent with the themes derived from a sample of people living with chronic illnesses of different types (Reynolds & Prior, 2003). However, the intensity of emotional turmoil, awareness of limited time, and degree of physical pain among participants with cancer may have been responsible for the greater emphasis reported here on the value of art-making for actively managing the negative aspects of illness. Compared with the previous study, this sample of participants with cancer made fewer references to art as a catalyst for other positive lifestyle choices (such as travel, exhibitions, or courses). Art-making provided opportunities to experience continuity, agency and self-esteem, all recognised as defining features of identity which are readily threatened by cancer (Gillies & Johnston, 2004). Art-making also helped participants to move beyond preoccupations with cancer and mortality. It offered a re-vitalising experience, preserving a healthy and vigorous engagement with life. For at least short periods, participants were able to escape from the liminal zone between life and death that has been described by Sibbett (2005). Participants’ length of artistic experience and level of skill were not clearly related to the benefits that they identified in their art-making, although it must be acknowledged that even those who had taken up art since diagnosis had enjoyed sufficient time to acquire valued skills, and to produce work that they found pleasing.
Previous research (such as Gall & Cornblat, 2002) has found that social support and spiritual beliefs provide resources for living with cancer. This study provides fresh insights by revealing how a personally meaningful leisure activity such as art-making helps to preserve a familiar, “normal” and positive identity during cancer and a sense of re-engagement with life. Findings are consistent with previously reviewed evidence about people's needs to protect their identities from the labelling that is so readily imposed by cancer.
The findings support previous qualitative research studies (Luker, Beaver, Leinster, & Owens, 1996; Luoma & Hakamies-Blomqvist, 2004) that have documented how some people cope with cancer by getting on with their lives (“living well”) rather than dwelling on their illness. However, Luoma and Hakamies-Blomqvist (2004) interpreted participants’ desire to focus on experiences other than cancer as a form of conscious denial or reality distortion. They used this term to describe participants’ strategy of trying not to think about their illness, instead seeking absorbing pastimes such as watching films. Yet denial occurs when people reduce their anxieties by refusing, consciously or unconsciously, to accept or believe a threatening event. In the current study, there was little evidence of denial, as participants were quite open about their fears for the future and they talked quite explicitly about their harrowing experiences of diagnosis and treatment. Yet when engaged in creative activity, they experienced an opportunity to withdraw attention from their cancer. Such a strategy can be understood as emotion-focused in relieving participants from worry and stress at least temporarily during creative activity, or as problem-focused in managing the intrusive cognitive burden of cancer. This strategy of deliberate immersion in activity may be a form of self-distraction, a strategy that was noted by Kershaw, Northouse, Kritpracha, Schafenacker, and Mood (2004) to be unrelated either to avoidant or active coping. Its relationship with subjective well-being requires further examination.
Previous research (by Tocher, 2002) has focused on the meanings of a physically active leisure pursuit for breast cancer survivors. In this study, participants’ accounts of art-making emphasised certain similar psychological and social benefits. These included enhanced control, the experience of living more intensely in the present moment, a commitment to future projects and making use of precious time, as well as social relationships built upon shared interests other than cancer.
Participants, through their art-making, appeared to be practising a form of resistance to the all-defining power of cancer. Narratives have been understood as a means of resistance to the life disruption that cancer brings about (Dreifuss-Kattan, 1990; Mathieson & Stam, 1995). This study seems to demonstrate many ways in which visualart-making confers psychological resistance to the potentially overwhelming psychological and social power of this condition. Other studies have emphasised that cancer disrupts identity (Gillies & Johnston, 2004; Mathieson & Stam, 1995). This study has revealed that leisure-based art-making can offer a powerful means of maintaining identity and subjective well-being during and after cancer treatment.
From a critical perspective, this qualitative study has a number of limitations. In interview-based research, one may take a “realist” view that participants are offering transparent windows on to their thoughts and feelings, and this assumption tends to be made by those conducting IPA studies (Smith et al., 1999). A more critical position is that participants may be providing “heroic” narratives to enhance their self-presentation, a strategy that is understandable given that people with cancer are bombarded with exhortations to be “positive” (Wilkinson & Kitzinger, 2000). Nevertheless, we argue that the interviewees, in describing the meanings of art-making, were not engaged in exaggeratedly positive self-presentation. They clearly engaged in art-making outside of the interview, as demonstrated by their artwork in the home, and had certain reasons for choosing creative activity, even if they could not fully articulate their motives in the interview. Also, they were quite open about their difficulties in relation to cancer and did not seem to be in denial. Interviews embraced both negative and positive experiences; participants’ narratives were not therefore artificially “heroic.”
The sample size was small though typical for a phenomenological study using IPA, but the generalisability of the findings cannot be assumed, as the sample was restricted in social and economic terms. Most had professional careers prior to their illnesses and seemed to be well supported by partners and families. These psychosocial resources may have promoted positive attitudes to living with cancer, and assisted their immersion in artistic pursuits. The sample was diverse in terms of diagnosis. A few regarded themselves as cancer “survivors”; some were uncertain about future health, and some regarded themselves as terminally ill. For an exploratory study this was considered helpful, but further research should compare and contrast the meanings of leisure art-making for participants in various stages of the cancer trajectory.
Conclusions
This phenomenological study sought to understand how visualart-making, as a leisure pursuit rather than as formal psychotherapy, contributed to the subjective well-being of people living with cancer. Participants described many stressful experiences associated with cancer and its treatment, which prompted a search for meaningful activity to help relieve stress. Emotional turmoil and/or early retirement from work prompted most participants to initiate or intensify an interest in art-making after diagnosis. For a minority, a few pieces of artwork enabled expression of feelings about cancer in symbolic or implicit terms, especially in the early stages after initial diagnosis or recurrence, and this was thought to be an emotionally fraught yet valuable experience. Art-making was also valued by participants for encouraging a positive outwards focus, and for limiting their preoccupation with cancer-related fears and physical discomfort. Art-making helped to support continuity of personal identity, an “able” self-image and equality within social relationships, thereby counteracting the ‘master status’ that cancer tends to confer.
There are several implications for art therapists. Firstly, cancer creates long-term stress, and art-making later in the cancer trajectory may assist some people to reconnect with aspects of their former identity, to resist the ‘master status’ that cancer can exert, and to experience “vital engagement” with life (Nakamura & Csikszentmihalyi, 2002). However, it must be acknowledged that personal interests and wider psychosocial resources will inevitably influence which leisure occupations are meaningful to individuals. Another implication from this study is that not all of the therapeutic potential of art resides in its symbolic function (although some individuals do need to engage in symbolic self-expression at least in the early stages of cancer). It is possible, of course, that individuals cannot readily use art to explore deeper feelings symbolically, without the support and containment of a therapist. Yet participants suggested that art-making as a leisure activity promotes subjective well-being in many other ways. Although published studies of artwork by cancer patients emphasise the exploration of darker themes, the sense of re-integration that can be achieved from creating aesthetically pleasing artwork should not be discounted.
Participants continued to face distressing experiences in relation to their illness, yet art-making during leisure time offered an important resource for regaining subjective well-being. Helen (50 years old, who had completed treatment for non-Hodgkins lymphoma), explained: “You eventually carry on but in a way, the living afterwards is more of a challenge than actually just getting through your treatment—although you don’t realise it at the time. And actually to live it positively.”
Articles_01
Encouraging the Development of Disability Allies
Nancy J. Evans, Jennifer L. Assadi, Todd K. Herriott
What does it mean to have a disability in today’s society, and what does it mean to be a disability ally? As the literature we review on disability paradigms illustrates, the concept of disability has been given many meanings. While disability is usually considered an individual characteristic, social justice advocates, as well as others who come from a constructionist perspective, argue that it is society, not the individual, that creates disabilities by imposing standards of normalcy that exclude those who are different physically, emotionally, or cognitively. Disabled People’s International (1982, as cited in Barnes and Mercer, 2003) made an important distinction between the concepts of impairment and disability, defining impairment as “the functional limitation within the individual caused by physical, mental, or sensory impairment” (p. 66) and disability as “the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers” (p. 66). Barnes and Mercer underscored that “the presence of an impairment does not mean automatic transfer to the status of a disabled person. It becomes an issue at the point where social barriers exclude that individual from participation in everyday activities” (p. 66). We subscribe to a constructionist philosophy while acknowledging that persons’ unique selves, including their physical, emotional, and mental capacities, as well as their other social identities (for example, gender, ethnicity, and sexual orientation), greatly influence their worldview, selfperceptions, and how they are perceived and treated by others. The concept of disability allies appears to be nonexistent in the literature. Our review suggests that while allies have been defined in a general
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sense, the idea of being an ally to persons with disabilities has previously gone unexplored, at least with regard to the scholarship of student affairs and related professions. Why is that? Recall the definition of social justice allies presented in Chapter One (this volume): “members of dominant social groups (e.g., men, Whites, heterosexuals) who are working to end the system of oppression that gives them greater privilege and power based upon their social group membership” (Broido, 2000, p. 3). We propose that the pervasive societal view of disability as an innate medical condition rather than a creation of societal oppression precludes an understanding that individuals with disabilities would benefit from or need allies. Changing this attitude and increasing awareness among individuals who are not disabled that their able-bodied identity is ascribed and affords them power and privilege is a necessary first step in developing disability allies. In addition, most people, particularly college students, faculty, and staff, have had little contact with individuals with disabilities. Until the passage of Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, people with disabilities did not attend college in great numbers, and at the presecondary level, children with disabilities often attended separate schools (Hall and Belch, 2000). As a result, few people have had the opportunity to learn about various impairments and to understand the experiences of individuals with those impairments. Lack of interaction with individuals with disabilities can result in attitudes of superiority or panic, either of which may be the result of fear of appearing stupid or not knowing what to do (Marks, 1999). In this chapter, we first review the paradigms through which disability has been understood and the implications of each. We then examine research on attitudes toward individuals with disabilities and ways to create attitude change and encourage ally development. Next, we present findings of a study we conducted that suggests ways in which individuals who are not disabled can be allies to students with disabilities. Finally, we discuss actions that disability allies can take to work for social justice. We approach this topic with varied worldviews that have shaped our thinking. Nancy Evans is a person with mobility impairment caused by childhood polio. In recent years, she has experienced post-polio syndrome involving increasing weakness and fatigue, leading her to use a wheelchair most of the time. Only in the past few years has she begun a scholarly exploration of the topic of disability and its implications for college students as well as herself. Jennifer Assadi identifies as a disability ally. Prior to college, she had minimal contact with and knowledge of people with disabilities. She began to learn more by joining a research team that studied the out-of-class experiences of students with disabilities and working closely with Nancy. Through these experiences, she has become aware of the difficulties individuals with disabilities face daily and has become sensitive to their needs and challenges, which has encouraged her to educate herself and others further. Todd Herriott is also a disability ally and is an
ENCOURAGING THE DEVELOPMENT OF DISABILITY ALLIES 69
advocate working in higher education. As a student affairs professional who provides services to both students who identify as having a disability and institutional agents to ensure equal access as mandated by federal legislation, he has begun to critically examine the manner in which students with disabilities are served. Recently he has been exploring methods of changing institutional paradigms regarding disability services to ones that are grounded in a social constructivist perspective.
Disability Paradigms The medical model has historically shaped society’s view of disability (Hughes, 2002). As Hughes noted, “Disability has been understood as a sickness, and disabled people have been understood as invalids” (p. 58). Within this framework, the lives of persons with disabilities are assumed to center around their inability to do things and their need to be taken care of by others (Michalko, 2002). A less pejorative, and therefore more acceptable, relabeling of the medical model, the functional limitations approach (Jones, 1996), focuses on the ways in which disability affects individuals’ ability to perform everyday tasks within the parameters of what is considered “normal.” Individuals using this perspective still view disability as “an individual matter requiring individual adaptation” (Michalko, 2002, p. 161). They ignore the fact that society normalizes being able-bodied as the accepted way of being (Michalko, 2002). In reaction to the patronizing and debilitating manner in which individuals with disabilities have been treated in society, disability rights activists have called for the development of a collective disability identity that is political in nature and rejects society’s view of impairment as an impediment (Michalko, 2002). This minority group paradigm emphasizes the common experiences of oppression, alienation, and discrimination that individuals with disabilities experience (Jones, 1996). Although this view of disability emphasizes group identity rather than individual identity, it still focuses on the victimization of individuals with disabilities and ways that individuals must address the injustices they face. The social construction model of disability shifts attention from the individual to society. Adherents of this perspective argue that “impairment only becomes disabling because of social structures and organization” (Marks, 1999, p. 77). In effect, society creates disability by defining what is normal and what is abnormal or pathological rather than merely different. Fine and Asch (2000) noted that “by concentrating on cure or on psychological and physical restoration of the impaired person, society and the discipline of psychology have avoided the need to focus on essential changes in the environmental side of the ‘person-in-environment’ situation” (p. 338). Combining elements of the minority group model and the social constructionist perspective,
70 DEVELOPING SOCIAL JUSTICE ALLIES
Disability oppression theory describes the pervasive and systematic nature of discrimination toward people with disabilities ...[and] identifies the process by which people with disabilities journey toward empowerment and liberation through the establishment of equitable access to accommodation within society’s systems, and through the creation of an interdependent social structure in which all persons are connected and depend on each other [Castañeda and Peters, 2000, p. 320].
This approach focuses on elimination of “ableism,” defined by Rauscher and McClintock (1997) as “a pervasive system of discrimination and exclusion that oppresses people who have mental, emotional, and physical disabilities ...[and] operates on individual, institutional, and societal/cultural levels” (p. 198). The goal of the disability oppression approach (also called the social justice approach) is to break down the rigid cultural norms that define what is normal so that physical, emotional, cognitive, and sensory differences are accepted and valued (Rauscher and McClintock, 1997). This approach also acknowledges the roles played by varying social identities in the experiences of people with impairments and takes into account differences in the perceptions and lived experiences of individuals based on context and the nature of their impairment (Castañeda and Peters, 2000).
Attitudes Toward Individuals with Disabilities Encouraging and developing social justice attitudes and actions among students who are not disabled is necessary in order to help reduce the overt and covert barriers that exist for persons with disabilities and increase the number of disability allies in society. To accomplish this goal, there must be a clear understanding of the attitudes that exist toward individuals with disabilities and sound suggestions for transforming negative attitudes into positive ones. Factors Influencing Disability Attitudes. Researchers have conducted hundreds of studies examining individuals’ attitudes toward people with disabilities in a variety of settings, such as employment, education, and the human services field. Favazza, Kumar, and Phillipsen (as cited in Baer, Hammond, and Warren, 2004) suggested that attitudes toward individuals with disabilities are formed by three major factors: indirect experiences (how individuals with disabilities are portrayed in books, movies, and other media), direct experiences, and the attitudes of one’s primary social group (such as parents and peers) toward persons with disabilities. Other influential factors are contact, information, and communication. Contact. Researchers have paid significant attention to ways that contact can influence an individual’s attitude toward disability. Hannah (1988) suggested that positive attitudes could be the result of pleasant interactions, whereas negative attitudes could be caused by an unpleasant interaction. Several researchers reported that positive attitudes were developed when
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structured contact was created between students with disabilities and those without disabilities (Brownlee and Carrington, 2000; Maras and Brown, 1996; Slininger, Sherrill, and Jankowski, 2000). Berry and Jones (1991) found that students who were not disabled developed negative attitudes toward students with disabilities when they experienced little control over the contact and the contact was perceived as more intimate. Similarly, Fichten (1988) found that social distance, a term she used to refer to both proximity and length of interaction, affected disability attitudes of college students. For example, for relatively distant situations, such as being in a large lecture class with a student with a disability, where the likelihood of extensive interaction is minimal, attitudes were generally favorable; however, for closer situations, such as being assigned a roommate with a disability, attitudes tended to be more negative. The amount of contact has also been found to affect attitudes in a positive manner. Students who are able-bodied who experienced a high level of contact with students who have impairments showed significant gains in their level of acceptance (Favazza and Odom, 1997). In addition, Yuker (1994) reported that “there are positive attitudes when contact with disabled people includes equal status, cooperative interdependence, support from authority figures, and opportunities for individualizing outgroup members” (p. 7). Information. Knowledge or information has been found to have an impact on the attitudes that students who are not disabled develop toward students with impairments (Yuker, 1994). Knowledge can increase one’s level of perceived competence in interacting with individuals with disabilities, which researchers have found creates more favorable attitudes toward persons with disabilities (Kowalski and Rizzo, 1996). Exposing students to a curriculum that teaches about disabilities increases their awareness and knowledge and leads to more positive attitudes toward individuals with disabilities, but the literature used must be accurate and followed by a structured discussion (Andrews, 1998; Baer, Hammond, and Warren, 2004; Campbell, Gilmore, and Cuskelly, 2003). Kelly, Sedlacek, and Scales (1994) found that college students who are not disabled form opinions regarding students with disabilities in stereotypical manners. By increasing knowledge, students who are not disabled may learn ways in which they are similar to students with disabilities, thus reducing the extent of negative attitudes held toward individuals with disabilities. In addition, this increase in knowledge may reduce the amount of stereotypical bias that students who are not disabled hold about students with disabilities. Communication. Researchers have found that communication and language affect attitudes toward persons with disabilities. Makas (1988) found that persons with disabilities and those without disabilities differ significantly in what they perceive as being positive attitudes toward persons with disabilities. For example, the perfectly good intention of a person who is not disabled could be perceived as negative (degrading) by a person with a
disability, thus causing that person to respond negatively. Tregaskis (2000) suggested that to encourage positive attitudes, a common language related to concepts such as impairment, disability, and exclusion needs to be shared between persons with disabilities and those without disabilities. Disability Attitude Change. Similar to most salient attitudes, those toward people with disabilities are difficult to change, and according to Horne (1988), research has yet to identify a specific procedure that is always effective in producing positive change. However, role-plays and simulations and a combination of contact and information have encouraged attitude change. Role-Plays and Simulations. Fichten (1988) suggested that role-plays that are structured as problem-solving exercises may encourage more positive attitudes. Wesson and Mandell (1989) noted that simulation activities (such as walking blindfolded, trying to read braille, or using a wheelchair) can be successful in improving the attitudes of students who are not disabled toward those who are. This is particularly the case if the activity appears to be a real experience that the individual will take seriously, is repeated a minimum of four times so the participant has repeated chances to determine how the task can be accomplished, and is observed by a peer, parent, sibling, or roommate since research has demonstrated that people are more engaged in activities if they are observed. In addition, participants should be given clear instructions so the activities are understood and done correctly, and they should reflect on the experience through writing or discussion, since reflection contributes to internalization of experiences. Combining Contact and Information. Many researchers have found that to change attitudes, contact and knowledge must be combined (Pernice and Lys, 1996; Fichten, 1988; Horne, 1988). Beattie, Anderson, and Antonak (1997) reported that a more favorable attitude toward students with disabilities can be developed by combining information, indirect contact (such as viewing videotapes), and direct contact (for example, having a professor with a visible disability). Yuker (1994) suggested that an attitudinal shift may occur if the following conditions exist between students with disabilities and those without disabilities: equal status, common goals, intimate rather than casual contact, and a pleasant or rewarding contact.
Encouraging Disability Ally Development Developing positive attitudes toward individuals with disabilities is a necessary but not sufficient first step in becoming a disability ally. Additional learning is needed to support individuals with disabilities and advocate for social justice for this population. There has been a paucity of scholarship addressing strategies for encouraging the development of disability allies. Therefore, the following suggestions are based on literature about ally development in general and ally development for other groups (for example, women, persons of color, and lesbian, gay, bisexual, and transgender
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individuals). We are careful to note some of the unique challenges that face disability allies. Washington and Evans (1991) cite awareness as the first level of ally development. From a social justice perspective, awareness of an issue provides opportunity to examine it critically and determine strategies for change. People rarely speak about disability, and the information that is available is often stereotypical and misleading. As a result, individuals who are not disabled know very little about the causes and ramifications of disability. Increasing the visibility of disability issues and individuals with disabilities is important on college campuses to create awareness and encourage persons who are not disabled to become disability allies. Awareness of an issue must be followed with education (Washington and Evans, 1991). Successful disability-related changes are most likely to occur when people are educated about the issues (Caras, 2004). Accurate information is necessary to dismantle the self-perpetuating cycle of oppression that feeds on each successive generation’s simply accepting the norms and cultural understanding of the previous generation. Incorporating education about disabilities into course work and programming, ensuring that libraries have books and other media about disability, and encouraging students to interact with persons with disabilities are critical factors in ally development. Helpful educational resources include Marks (1999), Barnes and Mercer (2003), and Linton (1998). In addition, the Web sites of the Association on Higher Education and Disability (http://www.ahead.org/), the HEATH Resource Center at George Washington University (http://www. heath.gwu.edu/index.html), and the Standing Committee on Disability of the American College Personnel Association (http://www.myacpa.org/ sc/cd/) provide up-to-date information about disability issues in higher education. The third level of ally development is the development of skills (Washington and Evans, 1991). Necessary skills include communication strategies to counter oppression, such as open and honest dialogue between individuals with disabilities and those without disabilities (Brownlee and Carrington, 2000); organizational techniques to facilitate change, such as Creamer and Creamer’s model of planned change (1986); and critical thinking that challenges and dismantles barriers on both a micro and macro level. Skills can be taught in structured ally development programs or social justice classes, or through mentoring.
Ally Behaviors and Actions Once individuals move through the first three levels of ally development, they have the ability to put their learning into practice through action (Washington and Evans, 1991). In the following two sections, we discuss ways in which allies can help to create a just campus environment for students with disabilities. First, we present the suggestions of several students
with impairments with whom we spoke during a study of involvement. Then we consider specific strategies based on social justice principles. Suggestions from Students with Impairments. The authors of this chapter, collaborating with two other researchers (Evans and others, 2004), conducted a phenomenological study to explore the out-of-class experiences of students with impairments. We divided the students into five groups based on impairment similarities. Each researcher interviewed two respondents and conducted a focus group with students in one of these groups. Through conducting this research, we identified ways in which students with disabilities thought students without disabilities could be supportive. The first suggestion was for students who do not have disabilities to be encouraging and helpful in their interactions with students with disabilities. Jessica (all names used are pseudonyms) was diagnosed with muscular dystrophy and has had significant loss of fine motor skills and muscle strength in her extremities; she uses an electric wheelchair. She recalled how women without disabilities “drug” her along to different events, thereby encouraging her to be involved:
I was in choir in high school and somebody on my dorm floor said that they’re having try-outs ...for [college] choir. . . . , so I went . . . , her just kinda dragging me along. . . . This [other] girl I know who’s in one of my classes. ...she drug me to this off-campus meeting. . . . It’s . . . a social gathering ...and that’s where I met [the friends with whom I now socialize].
Courtney, another student with mobility impairment, expressed similar feelings. She was in a farm accident at a young age that paralyzed her from the waist down so she uses a manual wheelchair. She talked about how other students in band helped her get up the ramp and through doors, which resulted in her feeling like “a part of the group.” While Jessica and Courtney stressed that students without disabilities can be supportive by being encouraging and helpful, one must keep in mind not to overdo it. Respecting the autonomy of individuals is important as well. An attitude that suggests that one knows what is best for an individual with a disability is condescending and insensitive. The second way in which these students thought students without disabilities could be supportive was by increasing their awareness and learning more accurate information about disabilities. One way to learn more is by asking questions. Kay, a twenty-one-year-old junior, was diagnosed with a hearing impairment at the age of two. She shared her feelings about students who did not have disabilities asking her about what it is like to be deaf: “Well, if they REALLY want to learn from me, then that’s great. I like it when they ask me and ...they obviously want to know more. . . . I think that’s really cool and I feel like I have a kinship with those kinds of people.” When students who do not have disabilities are not aware and do not appear to be interested in learning more, it can be a disheartening experience.
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Jamal, a student diagnosed with depression and social anxiety disorder, shared his frustrations with the lack of understanding of mental illness:
[Other students] don’t want to hear about it. You know, if somebody has cancer, they are going to talk about it. But, if somebody has depression, it’s just, “Oh, everybody gets down sometimes.” If somebody has generalized anxiety, then it’s, “Oh, everybody has stress, just deal with it.”. . . You don’t see [any awareness campaigns for mental illness]. What you do see is the little Zoloft guy bouncing around on commercials saying, “Oh, do you feel blue?”
Jamal’s comments reveal the ignorance that individuals can exhibit about mental illness and the inaccurate information that the general public receives from the media. Students who want to be disability allies must learn to distinguish what is reality and what is not by educating themselves about various impairments and the inaccurate ways in which the media often portray them. Finally, one student diagnosed with attention deficit–hyperactivity disorder talked about how students who are not disabled need to increase their knowledge so they would know that students with disabilities are not “breakable.” James, a member of a fraternity, reported, “The president and the chaplain don’t want me to be involved in the house very much anymore because they don’t feel like I can mentally handle it, which isn’t really true, but that’s just their stigma.” James’s comments reveal how a lack of knowledge can cause fear. Any student who wishes to be a disability ally must take steps to learn accurate information in order to dispel the myths and fears that exist about persons with disabilities. Ways of Being a Disability Ally. Given societal attitudes toward individuals with disabilities, we caution readers to carefully consider their motivations for working with this population. Too often individuals become “pseudo-allies” for one of three reasons: (1) to make themselves look good, (2) to benefit from providing services to those with disabilities, or (3) to “help the less fortunate” (Annette, n.d.). In the first case, pseudoallies take advantage of individuals with disabilities for their personal benefit; in the second, they exploit individuals with disabilities; and in the third, they treat individuals with disabilities in a patronizing and condescending manner. To be true disability allies, individuals must work with persons with disabilities, seeing and treating them as equals deserving of respect. The following are actions that allies can take to work effectively with persons with disabilities. These strategies focus on self-education, awareness raising and advocacy, and direct action. Many of the strategies we suggest draw on concepts associated with Universal Design, defined by the Center for Universal Design at North Carolina State University (1997) as “the design of products and environments to be usable by all people to the greatest extent possible, without the need for adaptation or specialized
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design” (p. 1). Essential to this idea is the notion that inclusion rather than adaptation or accommodation should be the goal. Self-Education. Educating oneself is an ongoing process. We encourage allies to learn everything they can about the oppression of persons with disabilities through reading, asking questions, and listening to others. Allies must always be aware of their own privilege as persons who are not disabled and must be open to having others point out when their own behaviors exhibit oppression. Viewing situations and environments from the perspective of a person with a disability is another important learning strategy. We encourage allies to imagine what their experience might be like if they had specific access issues and to listen to the expressed needs and experiences of those who identify as having an impairment. Awareness Raising and Advocacy. A major role that allies can play is questioning accepted practice in order to raise awareness of ways in which individuals with disabilities are oppressed. Questioning involves critically examining the assumptions and expectations of society about how things are done. Examples of awareness-raising behaviors include:
•Asking about the availability of alternative formats when handouts or other materials are distributed and requesting that the issue be addressed if none are available • When attending events, noticing if the location is accessible from both a physical and communication perspective and inquiring with event sponsors or organizers about access issues • Questioning behavior or words that continue the pattern of oppression toward persons with disabilities • Talking with members of social identity groups with whom one identifies about issues of disability oppression to help them understand the links among different forms of oppression • Working to ensure that disability issues are included when diversity is addressed in schools and in the workplace • Working to counter discrimination in housing, employment, and membership or participation in organizations and activities
Direct Action. It is not sufficient to cognitively agree with the concept of social justice as it applies to persons with disabilities or even to advocate on behalf of this population; true allies live their lives in accordance with their beliefs. Direct actions that allies can take include:
•Supporting persons with disabilities in taking leadership roles. • Proactively addressing access issues rather than leaving it up to members of the oppressed group to take action (for example, not patronizing places that are inaccessible). • Making one’s home or environment accessible to persons with disabilities.
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• Countering, on a person-to-person level, stereotypes, misconceptions, and conventional wisdom about the nature of disability and about how people with disabilities perceive, think, feel, act, and comprehend. • Challenging and intervening to prevent harassment, bullying, and other forms of overt hostility. • Providing solidarity in numbers through ally-to-ally outreach. •Being a “safe person” for persons in the process of disclosure of disability status. The parallels between coming out for lesbian, gay, bisexual, and transgender people and disclosure for people with nonapparent disabilities are particularly striking. •Raising one’s children with disabilities to be effective self-advocates. • Raising one’s children who are not disabled to be effective allies.
Conclusion Social change is created through thoughts, words, and actions. Student affairs professionals have an obligation to educate themselves so they have accurate information about disability and the experiences of students who are disabled. They must also serve as advocates for disability awareness and changes in policy and practice to ensure that individuals with impairments are treated equitably on college campuses. Finally, they have a responsibility to take action when oppression occurs and to work alongside individuals with disabilities to create a positive learning environment in which all students can succeed. If student affairs professionals model these behaviors, students will learn from their example, and disability allies will become a reality on college campuses rather than just a good idea proposed in this volume.
References Andrews, S. E. “Using Inclusion Literature to Promote Positive Attitudes Toward Disabilities.” Journal of Adolescent and Adult Literacy, 1998, 41, 420–427. Annette, A. “On the Question of Allies.” N.d. [http:www.madknight.com/pep/allies.htm]. Baer, R. D., Hammond, M., and Warren, C. “Educating Youth About Disabilities and Disabilities Careers: Preliminary Field Test Results.” Center for Persons with Disabilities News, 2004, 27(2), 1–7. [http://www.cpd.usu.edu/newsletters/PDF/ CPDNews v27No2.pdf]. Barnes, C., and Mercer, G. Disability: Key Concepts. Cambridge: Polity, 2003. Beattie, J. R., Anderson, R. J., and Antonak, R. F. “Modifying Attitudes of Prospective Educators Toward Students with Disabilities and Their Integration into Regular Classrooms.” Journal of Psychology, 1997, 13, 245–259. Berry, J. G., and Jones, W. H. “Situational and Dispositional Components of Reaction Toward Persons with Disabilities.” Journal of Social Psychology, 1991, 131, 673–684. Broido, E. M. “The Development of Social Justice Allies During College: A Phenomenological Investigation.” Journal of College Student Development, 2000, 41, 3–18. Brownlee, J., and Carrington, S. “Opportunities for Authentic Experience and Reflection: A Teaching Programme Designed to Change Attitudes Towards Disability for PreService Teachers.” Support for Learning, 2000, 15(3), 99–105.
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Campbell, J., Gilmore, L., and Cuskelly, M. “Changing Student Teachers Attitudes Towards Disability and Inclusion.” Journal of Intellectual and Developmental Disability, 2003, 28, 369–380. Caras, S. “Summit on Human Rights and Disability.” 2004. [http://www.peoplewho. net/documents/convention.htm]. Castañeda, R., and Peters, M. L. “Ableism.” In M. Adams and others (eds.), Readings for Diversity and Social Justice. New York: Routledge, 2000. Center for Universal Design. The Principles of Universal Design. (Version 2.0) Raleigh: North Carolina State University, 1997. Creamer, D. G., and Creamer, E. G. “Applying a Model of Planned Change to Program Innovation in Student Affairs.” Journal of College Student Personnel, 1986, 27, 431–437. Evans, N. J., and others. [Social integration of students with disabilities]. Unpublished raw data, 2004. Favazza, P. C., and Odom, S. L. “Promoting Positive Attitudes of Kindergarten-Age Children Toward People with Disabilities.” Exceptional Children, 1997, 63, 405–418. Fichten, C. S. “Students with Physical Disabilities in Higher Education: Attitudes and Beliefs That Affect Integration.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988. Fine, M., and Asch, A. “Disability Beyond Stigma: Social Interaction, Discrimination, and Activism.” In M. Adams and others (eds.), Readings for Diversity and Social Justice. New York: Routledge, 2000. Hall, L. M., and Belch, H. A. “Setting the Context: Reconsidering the Principles of Full Participation and Meaningful Access for Students with Disabilities.” In H. A. Belch (ed.), Serving Students with Disabilities. New Directions for Student Services, no. 91. San Francisco: Jossey-Bass, 2000. Hannah, M. E. “Teacher Attitudes Toward Children with Disabilities: An Ecological Analysis.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988. Horne, M. D. “Modifying Peer Attitudes Toward the Handicapped: Procedures and Research Issues.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988. Hughes, B. “Disability and the Body.” In C. Barnes, M. Oliver, and L. Barton (eds.), Disability Studies Today. Cambridge: Polity, 2002. Jones, S. R. “Toward Inclusive Theory: Disability as a Social Construction.” NASPA Journal, 1996, 33, 347–354. Kelly, A. E., Sedlacek, W. E., and Scales, W. R. “How College Students with and Without Disabilities Perceive Themselves and Each Other.” Journal of Counseling and Development, 1994, 73, 178–182. Kowalski, E., and Rizzo, T. “Factors Influencing Preservice Student Attitudes Toward Individuals with Disabilities.” Adapted Physical Activity Quarterly, 1996, 13(2), 180–196. Linton, S. Claiming Disability: Knowledge and Identity. New York: New York University Press, 1998. Makas, E. “Positive Attitudes Toward Disabled People: Disabled and Non-Disabled Persons’ Perspective.” Journal of Social Issues, 1988, 44, 49–61. Maras, P., and Brown, R. “Effects of Contact on Children’s Attitudes Toward Disability.” Journal of Applied Social Psychology, 1996, 26, 2113–2134. Marks, D. Disability: Controversial Debates and Psychosocial Perspectives. New York: Routledge, 1999. Michalko, R. The Difference That Disability Makes. Philadelphia: Temple University Press, 2002. Pernice, R., and Lys, K. “Interventions for Attitude Change Towards People with Disabilities: How Successful Are They?” International Journal of Rehabilitation Research, 1996, 19(2), 171–174.
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Rauscher, L., and McClintock, M. “Ableism Curriculum Design.” In M. Adams, L. A. Bell, and P. Griffin (eds.), Teaching for Diversity and Social Justice: A Sourcebook. New York: Routledge, 1997. Slininger, D., Sherrill, C., and Jankowski, C. M. “Children’s Attitudes Toward Peers with Severe Disabilities: Revisiting Contact Theory.” Adapted Physical Activity Quarterly, 2000, 17, 176–196. Tregaskis, C. “Interviewing Non-Disabled People About Their Disability-Related Attitudes: Seeking Methodologies.” Disability and Society, 2000, 15, 343–353. Washington, J., and Evans, N. J. “Becoming an Ally.” In N. J. Evans and V. A. Wall (eds.), Beyond Tolerance: Gays, Lesbians and Bisexuals on Campus. Washington, D.C.: American College Personnel Association, 1991. Wesson, C., and Mandell, C. “Simulations: Promoting Understanding of Handicapping Conditions.” Teaching Exceptional Children, 1989, 22(1), 32–35. Yuker, H. E. “The Effects of Contact on Attitudes Toward Disabled Persons: Some Empirical Generalizations.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988.
NANCY J. EVANS is professor and higher education program co-coordinator
Nancy J. Evans, Jennifer L. Assadi, Todd K. Herriott
What does it mean to have a disability in today’s society, and what does it mean to be a disability ally? As the literature we review on disability paradigms illustrates, the concept of disability has been given many meanings. While disability is usually considered an individual characteristic, social justice advocates, as well as others who come from a constructionist perspective, argue that it is society, not the individual, that creates disabilities by imposing standards of normalcy that exclude those who are different physically, emotionally, or cognitively. Disabled People’s International (1982, as cited in Barnes and Mercer, 2003) made an important distinction between the concepts of impairment and disability, defining impairment as “the functional limitation within the individual caused by physical, mental, or sensory impairment” (p. 66) and disability as “the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers” (p. 66). Barnes and Mercer underscored that “the presence of an impairment does not mean automatic transfer to the status of a disabled person. It becomes an issue at the point where social barriers exclude that individual from participation in everyday activities” (p. 66). We subscribe to a constructionist philosophy while acknowledging that persons’ unique selves, including their physical, emotional, and mental capacities, as well as their other social identities (for example, gender, ethnicity, and sexual orientation), greatly influence their worldview, selfperceptions, and how they are perceived and treated by others. The concept of disability allies appears to be nonexistent in the literature. Our review suggests that while allies have been defined in a general
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sense, the idea of being an ally to persons with disabilities has previously gone unexplored, at least with regard to the scholarship of student affairs and related professions. Why is that? Recall the definition of social justice allies presented in Chapter One (this volume): “members of dominant social groups (e.g., men, Whites, heterosexuals) who are working to end the system of oppression that gives them greater privilege and power based upon their social group membership” (Broido, 2000, p. 3). We propose that the pervasive societal view of disability as an innate medical condition rather than a creation of societal oppression precludes an understanding that individuals with disabilities would benefit from or need allies. Changing this attitude and increasing awareness among individuals who are not disabled that their able-bodied identity is ascribed and affords them power and privilege is a necessary first step in developing disability allies. In addition, most people, particularly college students, faculty, and staff, have had little contact with individuals with disabilities. Until the passage of Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990, people with disabilities did not attend college in great numbers, and at the presecondary level, children with disabilities often attended separate schools (Hall and Belch, 2000). As a result, few people have had the opportunity to learn about various impairments and to understand the experiences of individuals with those impairments. Lack of interaction with individuals with disabilities can result in attitudes of superiority or panic, either of which may be the result of fear of appearing stupid or not knowing what to do (Marks, 1999). In this chapter, we first review the paradigms through which disability has been understood and the implications of each. We then examine research on attitudes toward individuals with disabilities and ways to create attitude change and encourage ally development. Next, we present findings of a study we conducted that suggests ways in which individuals who are not disabled can be allies to students with disabilities. Finally, we discuss actions that disability allies can take to work for social justice. We approach this topic with varied worldviews that have shaped our thinking. Nancy Evans is a person with mobility impairment caused by childhood polio. In recent years, she has experienced post-polio syndrome involving increasing weakness and fatigue, leading her to use a wheelchair most of the time. Only in the past few years has she begun a scholarly exploration of the topic of disability and its implications for college students as well as herself. Jennifer Assadi identifies as a disability ally. Prior to college, she had minimal contact with and knowledge of people with disabilities. She began to learn more by joining a research team that studied the out-of-class experiences of students with disabilities and working closely with Nancy. Through these experiences, she has become aware of the difficulties individuals with disabilities face daily and has become sensitive to their needs and challenges, which has encouraged her to educate herself and others further. Todd Herriott is also a disability ally and is an
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advocate working in higher education. As a student affairs professional who provides services to both students who identify as having a disability and institutional agents to ensure equal access as mandated by federal legislation, he has begun to critically examine the manner in which students with disabilities are served. Recently he has been exploring methods of changing institutional paradigms regarding disability services to ones that are grounded in a social constructivist perspective.
Disability Paradigms The medical model has historically shaped society’s view of disability (Hughes, 2002). As Hughes noted, “Disability has been understood as a sickness, and disabled people have been understood as invalids” (p. 58). Within this framework, the lives of persons with disabilities are assumed to center around their inability to do things and their need to be taken care of by others (Michalko, 2002). A less pejorative, and therefore more acceptable, relabeling of the medical model, the functional limitations approach (Jones, 1996), focuses on the ways in which disability affects individuals’ ability to perform everyday tasks within the parameters of what is considered “normal.” Individuals using this perspective still view disability as “an individual matter requiring individual adaptation” (Michalko, 2002, p. 161). They ignore the fact that society normalizes being able-bodied as the accepted way of being (Michalko, 2002). In reaction to the patronizing and debilitating manner in which individuals with disabilities have been treated in society, disability rights activists have called for the development of a collective disability identity that is political in nature and rejects society’s view of impairment as an impediment (Michalko, 2002). This minority group paradigm emphasizes the common experiences of oppression, alienation, and discrimination that individuals with disabilities experience (Jones, 1996). Although this view of disability emphasizes group identity rather than individual identity, it still focuses on the victimization of individuals with disabilities and ways that individuals must address the injustices they face. The social construction model of disability shifts attention from the individual to society. Adherents of this perspective argue that “impairment only becomes disabling because of social structures and organization” (Marks, 1999, p. 77). In effect, society creates disability by defining what is normal and what is abnormal or pathological rather than merely different. Fine and Asch (2000) noted that “by concentrating on cure or on psychological and physical restoration of the impaired person, society and the discipline of psychology have avoided the need to focus on essential changes in the environmental side of the ‘person-in-environment’ situation” (p. 338). Combining elements of the minority group model and the social constructionist perspective,
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Disability oppression theory describes the pervasive and systematic nature of discrimination toward people with disabilities ...[and] identifies the process by which people with disabilities journey toward empowerment and liberation through the establishment of equitable access to accommodation within society’s systems, and through the creation of an interdependent social structure in which all persons are connected and depend on each other [Castañeda and Peters, 2000, p. 320].
This approach focuses on elimination of “ableism,” defined by Rauscher and McClintock (1997) as “a pervasive system of discrimination and exclusion that oppresses people who have mental, emotional, and physical disabilities ...[and] operates on individual, institutional, and societal/cultural levels” (p. 198). The goal of the disability oppression approach (also called the social justice approach) is to break down the rigid cultural norms that define what is normal so that physical, emotional, cognitive, and sensory differences are accepted and valued (Rauscher and McClintock, 1997). This approach also acknowledges the roles played by varying social identities in the experiences of people with impairments and takes into account differences in the perceptions and lived experiences of individuals based on context and the nature of their impairment (Castañeda and Peters, 2000).
Attitudes Toward Individuals with Disabilities Encouraging and developing social justice attitudes and actions among students who are not disabled is necessary in order to help reduce the overt and covert barriers that exist for persons with disabilities and increase the number of disability allies in society. To accomplish this goal, there must be a clear understanding of the attitudes that exist toward individuals with disabilities and sound suggestions for transforming negative attitudes into positive ones. Factors Influencing Disability Attitudes. Researchers have conducted hundreds of studies examining individuals’ attitudes toward people with disabilities in a variety of settings, such as employment, education, and the human services field. Favazza, Kumar, and Phillipsen (as cited in Baer, Hammond, and Warren, 2004) suggested that attitudes toward individuals with disabilities are formed by three major factors: indirect experiences (how individuals with disabilities are portrayed in books, movies, and other media), direct experiences, and the attitudes of one’s primary social group (such as parents and peers) toward persons with disabilities. Other influential factors are contact, information, and communication. Contact. Researchers have paid significant attention to ways that contact can influence an individual’s attitude toward disability. Hannah (1988) suggested that positive attitudes could be the result of pleasant interactions, whereas negative attitudes could be caused by an unpleasant interaction. Several researchers reported that positive attitudes were developed when
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structured contact was created between students with disabilities and those without disabilities (Brownlee and Carrington, 2000; Maras and Brown, 1996; Slininger, Sherrill, and Jankowski, 2000). Berry and Jones (1991) found that students who were not disabled developed negative attitudes toward students with disabilities when they experienced little control over the contact and the contact was perceived as more intimate. Similarly, Fichten (1988) found that social distance, a term she used to refer to both proximity and length of interaction, affected disability attitudes of college students. For example, for relatively distant situations, such as being in a large lecture class with a student with a disability, where the likelihood of extensive interaction is minimal, attitudes were generally favorable; however, for closer situations, such as being assigned a roommate with a disability, attitudes tended to be more negative. The amount of contact has also been found to affect attitudes in a positive manner. Students who are able-bodied who experienced a high level of contact with students who have impairments showed significant gains in their level of acceptance (Favazza and Odom, 1997). In addition, Yuker (1994) reported that “there are positive attitudes when contact with disabled people includes equal status, cooperative interdependence, support from authority figures, and opportunities for individualizing outgroup members” (p. 7). Information. Knowledge or information has been found to have an impact on the attitudes that students who are not disabled develop toward students with impairments (Yuker, 1994). Knowledge can increase one’s level of perceived competence in interacting with individuals with disabilities, which researchers have found creates more favorable attitudes toward persons with disabilities (Kowalski and Rizzo, 1996). Exposing students to a curriculum that teaches about disabilities increases their awareness and knowledge and leads to more positive attitudes toward individuals with disabilities, but the literature used must be accurate and followed by a structured discussion (Andrews, 1998; Baer, Hammond, and Warren, 2004; Campbell, Gilmore, and Cuskelly, 2003). Kelly, Sedlacek, and Scales (1994) found that college students who are not disabled form opinions regarding students with disabilities in stereotypical manners. By increasing knowledge, students who are not disabled may learn ways in which they are similar to students with disabilities, thus reducing the extent of negative attitudes held toward individuals with disabilities. In addition, this increase in knowledge may reduce the amount of stereotypical bias that students who are not disabled hold about students with disabilities. Communication. Researchers have found that communication and language affect attitudes toward persons with disabilities. Makas (1988) found that persons with disabilities and those without disabilities differ significantly in what they perceive as being positive attitudes toward persons with disabilities. For example, the perfectly good intention of a person who is not disabled could be perceived as negative (degrading) by a person with a
disability, thus causing that person to respond negatively. Tregaskis (2000) suggested that to encourage positive attitudes, a common language related to concepts such as impairment, disability, and exclusion needs to be shared between persons with disabilities and those without disabilities. Disability Attitude Change. Similar to most salient attitudes, those toward people with disabilities are difficult to change, and according to Horne (1988), research has yet to identify a specific procedure that is always effective in producing positive change. However, role-plays and simulations and a combination of contact and information have encouraged attitude change. Role-Plays and Simulations. Fichten (1988) suggested that role-plays that are structured as problem-solving exercises may encourage more positive attitudes. Wesson and Mandell (1989) noted that simulation activities (such as walking blindfolded, trying to read braille, or using a wheelchair) can be successful in improving the attitudes of students who are not disabled toward those who are. This is particularly the case if the activity appears to be a real experience that the individual will take seriously, is repeated a minimum of four times so the participant has repeated chances to determine how the task can be accomplished, and is observed by a peer, parent, sibling, or roommate since research has demonstrated that people are more engaged in activities if they are observed. In addition, participants should be given clear instructions so the activities are understood and done correctly, and they should reflect on the experience through writing or discussion, since reflection contributes to internalization of experiences. Combining Contact and Information. Many researchers have found that to change attitudes, contact and knowledge must be combined (Pernice and Lys, 1996; Fichten, 1988; Horne, 1988). Beattie, Anderson, and Antonak (1997) reported that a more favorable attitude toward students with disabilities can be developed by combining information, indirect contact (such as viewing videotapes), and direct contact (for example, having a professor with a visible disability). Yuker (1994) suggested that an attitudinal shift may occur if the following conditions exist between students with disabilities and those without disabilities: equal status, common goals, intimate rather than casual contact, and a pleasant or rewarding contact.
Encouraging Disability Ally Development Developing positive attitudes toward individuals with disabilities is a necessary but not sufficient first step in becoming a disability ally. Additional learning is needed to support individuals with disabilities and advocate for social justice for this population. There has been a paucity of scholarship addressing strategies for encouraging the development of disability allies. Therefore, the following suggestions are based on literature about ally development in general and ally development for other groups (for example, women, persons of color, and lesbian, gay, bisexual, and transgender
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individuals). We are careful to note some of the unique challenges that face disability allies. Washington and Evans (1991) cite awareness as the first level of ally development. From a social justice perspective, awareness of an issue provides opportunity to examine it critically and determine strategies for change. People rarely speak about disability, and the information that is available is often stereotypical and misleading. As a result, individuals who are not disabled know very little about the causes and ramifications of disability. Increasing the visibility of disability issues and individuals with disabilities is important on college campuses to create awareness and encourage persons who are not disabled to become disability allies. Awareness of an issue must be followed with education (Washington and Evans, 1991). Successful disability-related changes are most likely to occur when people are educated about the issues (Caras, 2004). Accurate information is necessary to dismantle the self-perpetuating cycle of oppression that feeds on each successive generation’s simply accepting the norms and cultural understanding of the previous generation. Incorporating education about disabilities into course work and programming, ensuring that libraries have books and other media about disability, and encouraging students to interact with persons with disabilities are critical factors in ally development. Helpful educational resources include Marks (1999), Barnes and Mercer (2003), and Linton (1998). In addition, the Web sites of the Association on Higher Education and Disability (http://www.ahead.org/), the HEATH Resource Center at George Washington University (http://www. heath.gwu.edu/index.html), and the Standing Committee on Disability of the American College Personnel Association (http://www.myacpa.org/ sc/cd/) provide up-to-date information about disability issues in higher education. The third level of ally development is the development of skills (Washington and Evans, 1991). Necessary skills include communication strategies to counter oppression, such as open and honest dialogue between individuals with disabilities and those without disabilities (Brownlee and Carrington, 2000); organizational techniques to facilitate change, such as Creamer and Creamer’s model of planned change (1986); and critical thinking that challenges and dismantles barriers on both a micro and macro level. Skills can be taught in structured ally development programs or social justice classes, or through mentoring.
Ally Behaviors and Actions Once individuals move through the first three levels of ally development, they have the ability to put their learning into practice through action (Washington and Evans, 1991). In the following two sections, we discuss ways in which allies can help to create a just campus environment for students with disabilities. First, we present the suggestions of several students
with impairments with whom we spoke during a study of involvement. Then we consider specific strategies based on social justice principles. Suggestions from Students with Impairments. The authors of this chapter, collaborating with two other researchers (Evans and others, 2004), conducted a phenomenological study to explore the out-of-class experiences of students with impairments. We divided the students into five groups based on impairment similarities. Each researcher interviewed two respondents and conducted a focus group with students in one of these groups. Through conducting this research, we identified ways in which students with disabilities thought students without disabilities could be supportive. The first suggestion was for students who do not have disabilities to be encouraging and helpful in their interactions with students with disabilities. Jessica (all names used are pseudonyms) was diagnosed with muscular dystrophy and has had significant loss of fine motor skills and muscle strength in her extremities; she uses an electric wheelchair. She recalled how women without disabilities “drug” her along to different events, thereby encouraging her to be involved:
I was in choir in high school and somebody on my dorm floor said that they’re having try-outs ...for [college] choir. . . . , so I went . . . , her just kinda dragging me along. . . . This [other] girl I know who’s in one of my classes. ...she drug me to this off-campus meeting. . . . It’s . . . a social gathering ...and that’s where I met [the friends with whom I now socialize].
Courtney, another student with mobility impairment, expressed similar feelings. She was in a farm accident at a young age that paralyzed her from the waist down so she uses a manual wheelchair. She talked about how other students in band helped her get up the ramp and through doors, which resulted in her feeling like “a part of the group.” While Jessica and Courtney stressed that students without disabilities can be supportive by being encouraging and helpful, one must keep in mind not to overdo it. Respecting the autonomy of individuals is important as well. An attitude that suggests that one knows what is best for an individual with a disability is condescending and insensitive. The second way in which these students thought students without disabilities could be supportive was by increasing their awareness and learning more accurate information about disabilities. One way to learn more is by asking questions. Kay, a twenty-one-year-old junior, was diagnosed with a hearing impairment at the age of two. She shared her feelings about students who did not have disabilities asking her about what it is like to be deaf: “Well, if they REALLY want to learn from me, then that’s great. I like it when they ask me and ...they obviously want to know more. . . . I think that’s really cool and I feel like I have a kinship with those kinds of people.” When students who do not have disabilities are not aware and do not appear to be interested in learning more, it can be a disheartening experience.
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Jamal, a student diagnosed with depression and social anxiety disorder, shared his frustrations with the lack of understanding of mental illness:
[Other students] don’t want to hear about it. You know, if somebody has cancer, they are going to talk about it. But, if somebody has depression, it’s just, “Oh, everybody gets down sometimes.” If somebody has generalized anxiety, then it’s, “Oh, everybody has stress, just deal with it.”. . . You don’t see [any awareness campaigns for mental illness]. What you do see is the little Zoloft guy bouncing around on commercials saying, “Oh, do you feel blue?”
Jamal’s comments reveal the ignorance that individuals can exhibit about mental illness and the inaccurate information that the general public receives from the media. Students who want to be disability allies must learn to distinguish what is reality and what is not by educating themselves about various impairments and the inaccurate ways in which the media often portray them. Finally, one student diagnosed with attention deficit–hyperactivity disorder talked about how students who are not disabled need to increase their knowledge so they would know that students with disabilities are not “breakable.” James, a member of a fraternity, reported, “The president and the chaplain don’t want me to be involved in the house very much anymore because they don’t feel like I can mentally handle it, which isn’t really true, but that’s just their stigma.” James’s comments reveal how a lack of knowledge can cause fear. Any student who wishes to be a disability ally must take steps to learn accurate information in order to dispel the myths and fears that exist about persons with disabilities. Ways of Being a Disability Ally. Given societal attitudes toward individuals with disabilities, we caution readers to carefully consider their motivations for working with this population. Too often individuals become “pseudo-allies” for one of three reasons: (1) to make themselves look good, (2) to benefit from providing services to those with disabilities, or (3) to “help the less fortunate” (Annette, n.d.). In the first case, pseudoallies take advantage of individuals with disabilities for their personal benefit; in the second, they exploit individuals with disabilities; and in the third, they treat individuals with disabilities in a patronizing and condescending manner. To be true disability allies, individuals must work with persons with disabilities, seeing and treating them as equals deserving of respect. The following are actions that allies can take to work effectively with persons with disabilities. These strategies focus on self-education, awareness raising and advocacy, and direct action. Many of the strategies we suggest draw on concepts associated with Universal Design, defined by the Center for Universal Design at North Carolina State University (1997) as “the design of products and environments to be usable by all people to the greatest extent possible, without the need for adaptation or specialized
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design” (p. 1). Essential to this idea is the notion that inclusion rather than adaptation or accommodation should be the goal. Self-Education. Educating oneself is an ongoing process. We encourage allies to learn everything they can about the oppression of persons with disabilities through reading, asking questions, and listening to others. Allies must always be aware of their own privilege as persons who are not disabled and must be open to having others point out when their own behaviors exhibit oppression. Viewing situations and environments from the perspective of a person with a disability is another important learning strategy. We encourage allies to imagine what their experience might be like if they had specific access issues and to listen to the expressed needs and experiences of those who identify as having an impairment. Awareness Raising and Advocacy. A major role that allies can play is questioning accepted practice in order to raise awareness of ways in which individuals with disabilities are oppressed. Questioning involves critically examining the assumptions and expectations of society about how things are done. Examples of awareness-raising behaviors include:
•Asking about the availability of alternative formats when handouts or other materials are distributed and requesting that the issue be addressed if none are available • When attending events, noticing if the location is accessible from both a physical and communication perspective and inquiring with event sponsors or organizers about access issues • Questioning behavior or words that continue the pattern of oppression toward persons with disabilities • Talking with members of social identity groups with whom one identifies about issues of disability oppression to help them understand the links among different forms of oppression • Working to ensure that disability issues are included when diversity is addressed in schools and in the workplace • Working to counter discrimination in housing, employment, and membership or participation in organizations and activities
Direct Action. It is not sufficient to cognitively agree with the concept of social justice as it applies to persons with disabilities or even to advocate on behalf of this population; true allies live their lives in accordance with their beliefs. Direct actions that allies can take include:
•Supporting persons with disabilities in taking leadership roles. • Proactively addressing access issues rather than leaving it up to members of the oppressed group to take action (for example, not patronizing places that are inaccessible). • Making one’s home or environment accessible to persons with disabilities.
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• Countering, on a person-to-person level, stereotypes, misconceptions, and conventional wisdom about the nature of disability and about how people with disabilities perceive, think, feel, act, and comprehend. • Challenging and intervening to prevent harassment, bullying, and other forms of overt hostility. • Providing solidarity in numbers through ally-to-ally outreach. •Being a “safe person” for persons in the process of disclosure of disability status. The parallels between coming out for lesbian, gay, bisexual, and transgender people and disclosure for people with nonapparent disabilities are particularly striking. •Raising one’s children with disabilities to be effective self-advocates. • Raising one’s children who are not disabled to be effective allies.
Conclusion Social change is created through thoughts, words, and actions. Student affairs professionals have an obligation to educate themselves so they have accurate information about disability and the experiences of students who are disabled. They must also serve as advocates for disability awareness and changes in policy and practice to ensure that individuals with impairments are treated equitably on college campuses. Finally, they have a responsibility to take action when oppression occurs and to work alongside individuals with disabilities to create a positive learning environment in which all students can succeed. If student affairs professionals model these behaviors, students will learn from their example, and disability allies will become a reality on college campuses rather than just a good idea proposed in this volume.
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Campbell, J., Gilmore, L., and Cuskelly, M. “Changing Student Teachers Attitudes Towards Disability and Inclusion.” Journal of Intellectual and Developmental Disability, 2003, 28, 369–380. Caras, S. “Summit on Human Rights and Disability.” 2004. [http://www.peoplewho. net/documents/convention.htm]. Castañeda, R., and Peters, M. L. “Ableism.” In M. Adams and others (eds.), Readings for Diversity and Social Justice. New York: Routledge, 2000. Center for Universal Design. The Principles of Universal Design. (Version 2.0) Raleigh: North Carolina State University, 1997. Creamer, D. G., and Creamer, E. G. “Applying a Model of Planned Change to Program Innovation in Student Affairs.” Journal of College Student Personnel, 1986, 27, 431–437. Evans, N. J., and others. [Social integration of students with disabilities]. Unpublished raw data, 2004. Favazza, P. C., and Odom, S. L. “Promoting Positive Attitudes of Kindergarten-Age Children Toward People with Disabilities.” Exceptional Children, 1997, 63, 405–418. Fichten, C. S. “Students with Physical Disabilities in Higher Education: Attitudes and Beliefs That Affect Integration.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988. Fine, M., and Asch, A. “Disability Beyond Stigma: Social Interaction, Discrimination, and Activism.” In M. Adams and others (eds.), Readings for Diversity and Social Justice. New York: Routledge, 2000. Hall, L. M., and Belch, H. A. “Setting the Context: Reconsidering the Principles of Full Participation and Meaningful Access for Students with Disabilities.” In H. A. Belch (ed.), Serving Students with Disabilities. New Directions for Student Services, no. 91. San Francisco: Jossey-Bass, 2000. Hannah, M. E. “Teacher Attitudes Toward Children with Disabilities: An Ecological Analysis.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988. Horne, M. D. “Modifying Peer Attitudes Toward the Handicapped: Procedures and Research Issues.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988. Hughes, B. “Disability and the Body.” In C. Barnes, M. Oliver, and L. Barton (eds.), Disability Studies Today. Cambridge: Polity, 2002. Jones, S. R. “Toward Inclusive Theory: Disability as a Social Construction.” NASPA Journal, 1996, 33, 347–354. Kelly, A. E., Sedlacek, W. E., and Scales, W. R. “How College Students with and Without Disabilities Perceive Themselves and Each Other.” Journal of Counseling and Development, 1994, 73, 178–182. Kowalski, E., and Rizzo, T. “Factors Influencing Preservice Student Attitudes Toward Individuals with Disabilities.” Adapted Physical Activity Quarterly, 1996, 13(2), 180–196. Linton, S. Claiming Disability: Knowledge and Identity. New York: New York University Press, 1998. Makas, E. “Positive Attitudes Toward Disabled People: Disabled and Non-Disabled Persons’ Perspective.” Journal of Social Issues, 1988, 44, 49–61. Maras, P., and Brown, R. “Effects of Contact on Children’s Attitudes Toward Disability.” Journal of Applied Social Psychology, 1996, 26, 2113–2134. Marks, D. Disability: Controversial Debates and Psychosocial Perspectives. New York: Routledge, 1999. Michalko, R. The Difference That Disability Makes. Philadelphia: Temple University Press, 2002. Pernice, R., and Lys, K. “Interventions for Attitude Change Towards People with Disabilities: How Successful Are They?” International Journal of Rehabilitation Research, 1996, 19(2), 171–174.
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Rauscher, L., and McClintock, M. “Ableism Curriculum Design.” In M. Adams, L. A. Bell, and P. Griffin (eds.), Teaching for Diversity and Social Justice: A Sourcebook. New York: Routledge, 1997. Slininger, D., Sherrill, C., and Jankowski, C. M. “Children’s Attitudes Toward Peers with Severe Disabilities: Revisiting Contact Theory.” Adapted Physical Activity Quarterly, 2000, 17, 176–196. Tregaskis, C. “Interviewing Non-Disabled People About Their Disability-Related Attitudes: Seeking Methodologies.” Disability and Society, 2000, 15, 343–353. Washington, J., and Evans, N. J. “Becoming an Ally.” In N. J. Evans and V. A. Wall (eds.), Beyond Tolerance: Gays, Lesbians and Bisexuals on Campus. Washington, D.C.: American College Personnel Association, 1991. Wesson, C., and Mandell, C. “Simulations: Promoting Understanding of Handicapping Conditions.” Teaching Exceptional Children, 1989, 22(1), 32–35. Yuker, H. E. “The Effects of Contact on Attitudes Toward Disabled Persons: Some Empirical Generalizations.” In H. E. Yuker (ed.), Attitudes Toward Persons with Disabilities. New York: Springer, 1988.
NANCY J. EVANS is professor and higher education program co-coordinator
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