Non-Communicable Diseases, Emergency Care and Mental Health Module: 19. Disability and Community Rehabilitation

Study Session 19  Disability and Community Rehabilitation

Introduction

In recent years, more and more health professionals have started to distinguish impairment from disability. Impairment refers to the physical, intellectual, mental and/or sensory characteristics or conditions that limit a person’s individual or social functioning, in comparison with someone without these impairments.

Disability, in contrast, is not something individuals ‘have’, but has a wider social meaning. It is the exclusion of people with impairments due to attitudinal and environmental barriers that limits their full and equal participation in the life of the community and society at large (Figure 19.1). It is now accepted that the disabling environmental and social barriers are major causes of the disability experienced by individuals with impairments.

Figure 19.1  An example of an environmental barrier.

It is important to ensure the inclusion of disabled people in society. Inclusion refers to the need to make sure that people with disabilities have access to all necessary services and that the barriers and limitations they experience in society are reduced. In this study session you will learn about disability and impairment, and ways to support the inclusion and rehabilitation of people with impairments in your community.

Learning Outcomes for Study Session 19

When you have studied this session, you should be able to:

19.1  Define and use correctly all of the key words printed in bold. (SAQs 19.1 and 19.4)

19.2  Differentiate between impairment and disability, and briefly summarise the different ‘models’ of disability. (SAQ 19.1)

19.3  Describe key aspects of appropriate communication with people with disabilities. (SAQ 19.2)

19.4  Describe the prevalence of disability and the major causes of disability. (SAQ19.3)

19.5  Explain how inclusion can be promoted using the twin-track approach. (SAQ 19.4)

19.6  Explain how you can support community rehabilitation in your catchment area. (SAQ 19.4)

19.1  Models of disability

A good way of understanding the distinction between impairment and disability is to consider some of the ways that disability has been thought of in the past. In this part of the session you are going to look at several models of disability. As you do this, think about what each model ‘says’ about the person with an impairment. This will help you to understand – and respond to – traditional beliefs about disability.

19.1.1  The charity model

The charity model of disability is a traditional way of viewing persons with disabilities as being dependent and helpless. In this model, people with disabilities are seen as:

• Objects of charity
• Having nothing to give, only to receive
• Being inherently poor, needy and fully dependent on charity or welfare for their survival.

The charity model is often related to traditional cultural and religious beliefs and practices such as the giving of alms. The problem with such practices is that they reinforce the idea that people with disabilities are helpless recipients of ‘charity’ from a ‘caring’ society, rather than subjects with rights.

19.1.2  The medical model

The medical model of disability focuses primarily on the medical problems of persons with disabilities and emphasises medical solutions. It assumes that:

• The problem of disability is due entirely to the individual’s condition or impairment.
• People with disabilities are — first and foremost — ‘patients’.
• The problem of disability requires a purely medical solution.

In the medical model the problem of disability is addressed by medical experts through providing treatment for people with disabilities, rather than asking them what they want. Like the charity model, this approach is largely unconcerned with the social or environmental features of disability.

19.1.3  The social model

The social model of disability views people with disabilities as being disabled less by their impairment than by society’s inadequate response to their specific needs. The social model emphasises that:

• Disability is best thought of as a social problem.
• The problem is not the person with disabilities or their impairment, but the unequal and discriminatory way they are treated by society.
• The solution lies in removing the barriers that restrict the inclusion and participation of people with disabilities in the social life of the community.

The emphasis on the removal of barriers focuses attention on a range of issues ignored in both the charity and medical models. For instance, it challenges inequalities before the law, restrictions caused by physical structures (the way buildings and villages are designed), and discrimination – the disabling aspects of negative attitudes towards people with disabilities.

19.1.4  The human rights model

The human rights model of disability can be seen as the most recent development of the social model. It states that:

• All human beings are equal and have rights that should be respected without distinction of any kind.
• People with disabilities are citizens and, as such, have the same rights as those without impairments.
• All actions to support people with disabilities should be ‘rights based’; for example, the demand for equal access to services and opportunities as a human right.

Like the social model, the human rights model places responsibility for addressing the problems of disability on society rather than on the person with disabilities. It also places a responsibility on you to ensure that appropriate legislation designed by the government is complied with at a local level.

19.2  Types of impairments

There are many types of impairments, the most common types will be briefly discussed in this section.

19.2.1  Mobility and physical impairments

There are a variety of physical impairments that impact on functioning and mobility. These include limitations in the use of the limbs, limited manual dexterity, limited coordination of limbs, cerebral palsy, spinal bifida and sclerosis. Physical impairment can be congenital (something one is born with), or it can be the result of disease, accident, violence or old age.

19.2.2  Sensory impairments

Hearing impairments

Figure 19.2  A person with a hearing impairment using a hearing aid.

There is a wide variety in the form and severity of hearing impairments, ranging from partial to complete deafness. People who are partially deaf can often use hearing aids to assist their hearing (Figure 19.2).

Deafness can be genetic, be evident at birth, or occur later in life as a result of disease or due to old age. Both deaf and partially deaf people use sign language as a means of communication. The lack of knowledge of sign language amongst the general population can create communication difficulties for deaf and partially deaf people and can also be thought of as a disabling barrier.

19.2.3  Intellectual impairments

Intellectual impairments are characterised by significant limitations in intellectual functioning, which also impact on many everyday social and practical skills. The medical term for these impairments is ‘intellectual disability’ (see Study Session 17, which also discusses some common causes).

19.2.4  Multiple impairments

Some people have to cope with several impairments, either permanently or for periods of time (e.g. during an illness). Examples of permanent multiple impairments include people who are both deaf and blind, and people with both a physical and intellectual impairment.

Take a little time now to think about the ways in which people with either intellectual or multiple impairments might be further disadvantaged by the social environment in which they live. In wealthy countries (such as the USA and in Europe), or in big cities, the impact of these impairments may be lessened by the use of (expensive) technology. However, access to such technology is often very limited in the villages and rural areas of developing countries. This highlights the fact that, while people may have the same experiences in terms of impairment, their experience of disability might be very different.

19.3  Appropriate and acceptable language

There is often much confusion around the language to be used when talking about disability and/or addressing persons with disabilities. Acceptable terminology changes over time and may be different in different countries.

19.3.1  Appropriate and inappropriate terms

In your daily work it is important to keep the following guidelines in mind:

• When describing a person, focus on their abilities and actions rather than their limitations, and avoids words that imply that they are passive ‘objects’ rather than active subjects. Expressions like ‘she uses a wheelchair’ or ‘he is partially sighted’ are preferred to terms such as ‘confined to a wheelchair’ or ‘partially blind’.
• Avoid ‘sensationalising’ an impairment by using expressions such as ‘afflicted with’, ‘victim of’, ‘suffering from’, and so on (see also Table 19.1).
• Emphasise the individual, rather than the impairment, by saying, for example, ‘a person with paraplegia’, instead of ‘a paraplegic’ or ‘a paraplegic person’. For the same reason, avoid grouping individuals into generic categories through expressions like the deaf, the blind, etc.
• When talking about places or buildings designed to overcome the barriers faced by people with disabilities, use the term ‘accessible’ (e.g. ‘an accessible parking space’) rather than ‘parking for the disabled’ or ‘for the handicapped’.
• Finally, people without disabilities should not be referred to as ‘normal’, ‘healthy’ or ‘able-bodied’. People with disabilities are not – as such expressions suggest – ‘abnormal’, ‘sick’ or ‘unable’.

It is appropriate for you to continue using words such as ‘see’, ‘look’, ‘walk’, ‘listen’, when talking to people with various disabilities, even if the person is, for example, partially sighted or uses a wheelchair or hearing aid.

19.3.2  Communication with people who have impairments

When introduced to a person with a disability, it is appropriate to offer to shake hands. People with limited hand use or who wear an artificial limb can usually shake hands. (Shaking hands with the left hand is an acceptable greeting.)

When you are talking with a person who has difficulty speaking, listen attentively. Be patient and wait for the person to finish, rather than correcting or speaking for them. If necessary, ask short questions that require only short answers, or a nod or shake of the head. Never pretend to understand if you are having difficulty doing so. Instead, repeat what you have understood and allow the person to respond.

When speaking with a person who uses a wheelchair or a person who uses crutches, place yourself at eye level in front of the person to facilitate the conversation. When speaking with someone with a visual impairment, make sure to introduce yourself by name. When conversing in a group, remember to identify the person to whom you are speaking.

To get the attention of a person with a hearing impairment, tap the person on the shoulder or wave your hand. Look directly at the person and speak clearly, slowly, and expressively to determine if the person can read your lips. Not all people with a hearing impairment can read lips. For those who do, be sensitive to their needs by facing the light source and keep hands, food and drink away from your mouth when speaking.

People with an intellectual disability may have difficulty understanding language that is complex, or contains difficult words. It is therefore important when talking with someone with an intellectual disability to follow the guidelines in Box 19.1.

19.4  Myths and facts about disability

In the community, many people do not know much about disability and have a misunderstanding of what it is like to live with a disability. Some common myths about disability are given below in Box 19.2, together with the actual facts so that you can help to challenge these myths.

As a healthworker, you can help remove barriers by encouraging participation of people with disabilities in your community through:

• using accessible sites for meetings and events
• advocating for a barrier-free environment
• speaking up when negative words or phrases are used about persons with disabilities
• accepting persons with disabilities as individuals with the same needs, feelings and rights as yourself.

19.5  Situation of disability in Ethiopia

According to available survey results from the 2006 census, of a total population in Ethiopia of more than 73 million, there are 805,535 (or 0.8 million) persons with disabilities. However, relevant government authorities, researchers, and people active in the field of disability all agree that the figures are very low compared to the prevalence of disability in neighboring countries and other developing countries. The number of persons with disabilities in Ethiopia is likely to be underestimated due to inadequate definitions or what constitutes disability and which disabilities should be included in the count. It is also likely that parents are not willing to disclose that they have a child or family member with a disability because of stigma. The actual number of people with disabilities in Ethiopia is therefore likely to be much higher.

Box 19.3 lists some of the major preventable causes of disabling impairments. Poverty is not only a cause, but also a major consequence of disability in Ethiopia. It is estimated that 95% of all persons with disabilities in the country are living in poverty. Many of these people live in rural areas, where basic services are limited and often inaccessible to persons with disabilities and their families. As a result, most persons with disabilities do not have access to services and lack the opportunities to earn a level of income to facilitate independent living. In the remainder of this study session, you will consider what you can do to tackle this problem.

19.6  The twin- track approach

To promote and facilitate equal opportunities for people with disabilities and their full participation in society, the twin track approach focuses on their inclusion in both a) mainstream and b) disability-specific development initiatives. Neither track (mainstream or disability specific) is better or more important than the other. They are both required to ensure that the needs of all people with disabilities are met.

19.6.1  Mainstream programmes and services

Figure 19.3  An inclusive community meeting is accessible to everyone.

The first track focuses on mainstream programmes and services, which are not specifically designed for persons with disabilities, such as public health services, mainstream schools, community development programmes, transportation, etc. This track focuses on making these mainstream services more accessible for people with disabilities. The approach in mainstream schools, for instance, might involve the construction of ramps to make classrooms accessible to wheelchair users. Similarly, textbooks and other written materials might be transcribed into Braille copy for students with visual impairments.

What efforts might you make to promote and facilitate the inclusion of persons with disabilities in mainstream programmes and services? One of the things you can do, for example, is to make sure that the meetings you arrange in your community (e.g. your awareness-raising meetings, see Study Session 18) are equally accessible to everyone (Figure 19.3). This way you set a good example that can be followed by influential people in your community.

19.6.2  Disability-specific programmes and services

Figure 19.4  Examples of physical aids.

The second track focuses on disability-specific programmes and services designed on purpose to address the needs of people with disabilities, such as orthopaedic centres, special schools, etc. You should find out about any such projects that may be operating in your area. You could help in making these disability-specific programmes and services more accessible at community level. For example, you might direct the families of children with motor or sensory impairments to a project that provides physical aids such as crutches (Figure 19.4), hearing aids, braces or wheelchairs (Figure 19.5).

Figure 19.5  (a) A man and a woman with a physical impairment. The woman’s mobility is greatly helped by having access to a wheelchair, (b) the man is not. (Photos: Janet Haresnape and Basiro Davey)

19.7  Community-based rehabilitation (CBR)

Community health centres are often the first point of contact for persons with disabilities and their families seeking healthcare. In addition, in some regions, Community-Based Rehabilitation (CBR) programmes provide home-based support to parents and children with disabilities as well as to older people with disabilities. Currently, these CBR programmes are primarily run by the non-governmental organisations (NGOs) that belong to the CBR Network in Ethiopia (CBRNE).

You can support CBR activities by finding out about impairments among children in your locality, focusing on the early identification of impairments, and providing basic interventions to children, youth and adults with impairments. As noted in Section 19.6.2, you can also facilitate links between individuals with impairments and specialised services.

19.8  UN Convention on the Rights of Persons with Disabilities

The UN Convention on the Rights of Persons with Disabilities (UNCRPD) aims to protect the rights and dignity of persons with disabilities. Parties to the Convention (including Ethiopia) are required to promote, protect, and ensure the full enjoyment of human rights by persons with disabilities. The Convention was signed in 2007 and ratified by the Ethiopian House of Peoples’ Representatives in June 2010.

The UNCRPD introduced the concept of ‘reasonable accommodation’. This acknowledges that people with disabilities face many barriers and reasonable accommodation should be made to redress this. Reasonable accommodation involves providing the necessary and appropriate modification and adjustments, while ‘not imposing a disproportionate or undue burden’. This reflects the fact that addressing all the barriers faced by people with disabilities requires a lot of resources that may not always be available. Nevertheless, there are a number of possible reasonable accommodations that providers could make. These include making existing facilities (such as health centres) accessible for people using crutches and wheelchairs, providing sign language interpretation, providing information in Braille, and so on. At a community level, you can help in making these changes.

Summary of Study Session 19

In Study Session 19, you have learned that:

1. Impairments and disability are different. The first relates to the physical aspects of disablement whilst the second relates to the social aspects of disability.
2. The four broad categories of impairment are: physical, sensorial, intellectual and multiple.
3. Different ways of thinking about disability can be seen in the four main ‘models’ of disability: the charity model, the medical model, the social model and the human rights model.
4. Myths (misconceptions) about people with disabilities and the use of inappropriate terminology when discussing disability is commonplace.
5. Poverty can cause disability, but can also be a consequence of disability, as many people with a disability in Ethiopia do not have a job.
6. The aims of the UN Convention on disability are being pursued in Ethiopia through the use of the twin-track approach and the notion of ‘reasonable accommodation’. You should consider using these to play your part in facilitating the inclusion of people with disabilities in mainstream society.

Self-Assessment Questions (SAQs) for Study Session 19

Now that you have completed this study session, you can assess how well you have achieved its Learning Outcomes by answering these questions. Write your answers in your Study Diary and discuss them with your Tutor at the next Study Support Meeting. You can check your answers with the Notes on the Self-Assessment Questions at the end of this module.

Read the following case study and answer the questions at the end.