LIVING IN THE STATE OF STUCK:
HOW ASSISTIVE TECHNOLOGY IMPACTS THE
LIVES OF PEOPLE WITH DISABILITIES
Book Author: Marcia J. Scherer, Ph.D.
Workbook Author: Trish Wielandt, PhD, M.A., PG Cert Education, B.App Sci (OT)
Department of Occupational Therapy
Faculty of Rehabilitation Medicine
University of Alberta, canada
Going into the 21st century with a disability
This first chapter introduces Chuck and Brian both of whom experience living with a spinal cord injury (C4 complete and C6 complete respectively). There is also a section devoted to explaining about spinal cord injuries and the functional expectations. The final section highlights the uniqueness of spinal cord injury and provides a comparison of Chuck and Brian’s levels of independence.
1. What are the differences between a complete and incomplete spinal cord injury?
2. Briefly explain the causes of spinal cord injury?
3. Using Figure 1.1 explain how spinal cord injuries are classified.
4. Identify the innervations and functions that are expected to be preserved for both Chuck and Brian.
1. What do you think about Chuck’s comments about his initial therapy and how it focused solely on improving his functional ability?
2. What sort of pragmatic and emotional adaptation issues would both Chuck and Brian have faced early in their rehabilitation?
3. Why do you think that there are such immense differences regarding AT provision for Chuck and Brian?
Visit http://www.scipilot.com/_g/cons_g/index.php to read of stories (there are 61 currently) about people who live with a spinal cord injury as well as their experiences with AT. This link will help you find out about how AT such as wheelchairs, voice recognition software and adapted vehicles can assist them in their daily activities. You will also learn about the process of how they obtained their AT.
Feedback to class about one of the people you read about.
Independent for the first time
In this chapter we meet Jim and Maggie who have cerebral palsy a congenital disability. There is a section which discusses the many differences that can exist between acquired and congenital disabilities. Likewise there appears to be differences in clients’ perceptions about AT between the two groups
1. Briefly explain the cause of cerebral palsy.
2. Briefly outline the expected functional abilities/challenges across the lifespan for each type of cerebral palsy.
3. Why do you think Jim and Maggie had such different perceptions of the AT provided for them?
Discussion Questions and Activities:
1. In this chapter Jim reflects that in 1986 society had certain perceptions about people with disabilities. Do you think much has changed since then? Provide a brief rationale for your answer.
2. Jim mentioned that there were certain AT that he abandoned. How could this have been prevented? Visit http://www.e-bility.com/articles/at_selection.php and read why it is important for health professionals to ensure a client-centered approach when selecting AT.
3. Maggie mentioned that she wanted “more of a social life”. Why do you think this important area of occupational performance was overlooked? How could this have been remediated? Visit http://www.e-bility.com/articles/at.php and read about the importance of using AT outcome measures.
Assistive Technologies as “world openers”
This chapter provides a definition of AT and discusses the differences between low-, medium- and high tech AT items. Further there is an overview of the types of AT available for clients with functional limitations of the upper and lower extremity.
1. What are assistive technologies what is there purpose?
2. Provide an example for low, medium and high technology AT items.
3. Why is it important for clients to have choices among AT options?
1. Why should AT service provision be individualized?
2. What were the main differences in the AT experiences for Jim, Jeremiah and Cody and why do you think this happened?
3. What was lacking here for Jim, besides having different technology?
4. What other AT items could be added to Tables 3.1 and 3.2?
1. Search the Internet to identify the AT suppliers in your area and familiarize yourself with the AT items which are available to assist clients with their activities of daily living (self -care, productivity and leisure).
2. Prepare a 5-minutes presentation/demonstration about one of the AT items you have located, ensuring you detail what it is used for, who would benefit from using it the most, how is it used, how much it costs and its availability. Also discuss whether clients who purchase this AT can expect repairs and other service delivery after purchase.
In God we trust: A brief historical review of rehabilitation practices
This chapter provides an historical overview of rehabilitation practices in the US. Besides identifying the legislative background for many changes that have occurred it highlights the important focus from people to person.
1. What has caused the shift in emphasis from people to person regarding rehabilitation service provision?
2. Describe the differences between the medical model and social model of AT service provision?
3. Besides the physical environmental changes in cities and towns around the US what else has changed and why?
Discussion Questions and Activities:
1. What are the implications (positive and negative) for therapists in moving from the medical model to a social model for AT service provision?
2. Visit the World Health Organisation (WHO) website and locate the model of disability that the International classification of functioning, health and disability (ICF) is based on. Discuss how this links with the social model of model of AT provision.
3. How does Figure 4.3 help us to conceptualize the factors needing to be considered to ensure we correctly match the clients’ needs with AT characteristics?
4. Why is it important for us to have an understanding of the human perspective of AT use? Revisit this website http://www.e-bility.com/articles/at.php
Rehabilitation success: The relativity of theory
This chapter highlights the divergent views of rehabilitation clients and service providers regarding “rehabilitation success”. It also presents differing perceptions of “the disability experience”. Each person will have their own expectations regarding the rehabilitation process and their unique needs should be considered during treatment interventions.
1. Why is the “disability experience” considered both a personal and social construction?
2. How did Butch’s perceptions of disability affect his ability to cope?
3. Discuss the importance of client motivation during AT service provision.
1. Why do you think some rehabilitation professionals focus only on functional gains and how can this be changed?
2. People with disabilities say that measuring “rehabilitation success” should not include a comparison with non-disabled people. Why was this occurring and how can this be changed?
3. Discuss media portrayal of disability from your experience and how can rehabilitation professionals change this?
1. Search for “better” examples of the portrayal of disability- you will often find that these are first hand accounts written by the person themselves.
2. Locate an article which is not a good example in its portrayal of disability.
3. Prepare a 5-minute presentation about the differences in the content of the two articles. Ensure you give a brief overview of each person and their story before critiquing the articles.
Struggles and Strivings
This chapter deals with quality of live issues for those with disabilities. It clearly shows that being considered fully functional in self care activities does not equate with clients having a better quality of life.
1. What is a definition for “quality of life”?
2. Briefly the detail the consequences of not considering environmental aspects when AT was provided for Ann and Linda?
3. Why does there need to be consideration given to evaluating a client’s environment when providing AT?
1. Explain how a change of environment led to many positive alterations in Brian’s life?
2. Why was Maggie experiencing so many transitions?
3. What impact would the ageing process have on AT use and what do AT providers need to consider here?
1. Find out what you can about Universal Design and discuss how such a concept can be useful for those people who live with disabilities.
2. Imagine you will be confined to a wheelchair for the rest of your life. Obtain the measurements of a standard wheelchair (width, height and depth) then determine could you use this in your current home. You will need to measure door widths, identify where there are steps etc. Write a list of the challenges you would face getting about in your home. Then consider the other barriers in wider society, how would you get to school, work sports etc.
Myths and Machines
This chapter outlines the psychological and psychosocial factors associated with the disability experience.
1. What are the 3 main factors identified by Vash (1981) related to defining a person’s disability experience?
2. Describe Maslow’s hierarchy of needs and how does this model help us understand how clients cope or otherwise with disability?
3. What are the characteristics of “coping” and “succumbing” according to Wright (1960)?
1. What are your thoughts about the idea of relationship rehabilitation and could this easily be incorporated into a mainstream rehabilitation programme?
2. Explain AT use/non-use as depicted in Figure 7.3 and how can this model assist in facilitating a client’s adaptation (pragmatic and emotional) to disability?
3. Several of the people in this book have related about being unable to have intimate relationships. How has this interfered with the adaptation process and how could have this situation been avoided?
1. Using the Internet locate 2 support groups (acquired and congenital conditions) in your area for those people who live with disabilities.
2. Be prepared to feedback to the class about each group’s vision and mission statements, their philosophy, services provided and available resources.
Dilemmas, Challenges and Opportunities
This chapter outlines the reasons for AT abandonment as well as providing guidelines to facilitate an accurate match between the person, the AT features, and the context in which the item is intended to be used.
1. What are consequences when provided AT is not used?
2. According to Philips and Zhao (1993) what are the factors which contributed to AT abandonment in their study?
3. What are the characteristics of the milieu, features of client’s personality and the characteristics of the AT which need to be considered before providing AT recommendations?
1. What do you think of the model for matching person and technology (MPT)? Compared to current service provision methods you are familiar with, how much more effective would the MPT be and why?
2. Discuss the importance of follow-up when providing AT and how the MPT might assist with this component of the intervention?
3. Do you think it is important to measure AT outcomes and why?
1. Using the Internet to identify other AT outcomes measures which are currently used.
2. When you feedback to the class discuss whether these are client-centered or equipment centered and do they consider the client’s milieu at all?
Battles fought and won, battles waged and lost
This chapter updates each person’s story involved in this book.
1. Provide an overview of the “battles won” for Jim, Brian, Chris, Maggie, Ann and Linda.
2. Provide an overview of “battles lost” for Chuck, Butch and Ken.
1. What are your thoughts about “rehabilitation success” having followed these people’s stories from 1986 through to 2003?
2. Considering these stories what changes do you think are needed in current rehabilitation practice and AT provision? You may want to suggest legislative and social changes also.
1. Look up the Americans with Disabilities Act of 1990 and note its mandate and eligibility criteria. Further, identify the legislation’s successes or otherwise.
2. When this legislation was enacted George H. W. Bush said, 'I know there may have been concerns that the ADA may be too vague or too costly, or may lead endlessly to litigation. But I want to reassure you right now that my administration and the United States Congress have carefully crafted this Act. We've all been determined to ensure that it gives flexibility, particularly in terms of the timetable of implementation; and we've been committed to containing the costs that may be incurred.... Let the shameful wall of exclusion finally come tumbling down.’
3. As a class discuss this statement and identify the legislative changes needed, if any, to improve the quality of life for those persons who live with disabilities. Provide a rationale for each suggestion.
Still living in the state of stuck
The final chapter offers suggestions to enhance AT use.
1. Outline the changes suggested to avoid being “stuck”?
2. Briefly provide sources of AT funding as outlined.
3. How are we all living “in a state of stuck” regarding new technologies as described by Marcia Scherer? Identify where you are “stuck”.
1. How can you practically involve potential users in the development and upgrading of AT?
2. What do you think would be the benefits/challenges of providing AT solutions for clients as part of a multi-disciplinary team?
1. Write a short reflection piece (one page) about how your perceptions of AT service provision have changed since reading this book.
2. Be prepared to discuss your reflections with the class and include your personal take on this book’s ‘take home message’