Study Session 2  Including People with Disabilities

Introduction

In Study Session 1 you were introduced to the concepts of inclusion and exclusion from WASH and learned about the different groups of people who are frequently excluded. Now we look more closely at one of these groups, namely people with disabilities and consider how changes in attitudes and practice can create an environment where they are included, rather than excluded.

In this study session you will learn how people with different types of impairment face various barriers in their daily lives that affect their ability to access WASH and other services. You will discover there are several different estimates of the number of people in Ethiopia who have disabilities. The session includes some tips for communicating with and about people with disabilities and concludes with a brief discussion of approaches to collecting data on disability and inclusive WASH.

Learning Outcomes for Study Session 2

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

2.1 Define and use correctly all of the key terms printed in bold. (SAQs 2.1 and 2.2)

2.2 Describe the different types of impairment that affect people with disabilities. (SAQs 2.1 and 2.2)

2.3 Identify barriers to disability inclusion in WASH services. (SAQs 2.1 and 2.3)

2.4 Communicate effectively with people with disabilities using positive words. (SAQs 2.1 and 2.4)

2.5 Outline some approaches to collecting data about disability and inclusion. (SAQ 2.5)

2.1 What is disability?

What comes into your mind when you think of the word ‘disability’? Many people associate the concept with restriction and limited potential. They often do not recognise that the restrictions and limitations are frequently caused by the physical environment in which we live and the attitudes and behaviours of other people. The definition of disability therefore has two components. Disability refers to a functional limitation as a result of partial or complete loss of the function of a body part, and the resulting restriction an individual has in society due to the nature of the environment in which they live. In simpler words, if you have a disability it means you are unable to do some things because the place where you live has not been designed for someone like you. (Remember the module title of Count me in.)

The formal definition of persons with disabilities from the UN Convention on the Rights of Persons with Disabilities was introduced in Study Session 1. It stated that persons with disabilities have ‘long-term physical, mental, intellectual or sensory impairments which, in interaction with various barriers, may hinder their full and effective participation in society on an equal basis with others’ (United Nations, 2006).

This definition uses two important terms: impairments and barriers. Impairment is the loss of a function of the body, for example, when someone is unable to walk or cannot hear properly. Impairments are mostly irreversible and lifelong. Different types of impairment are described in Section 2.2.

A barrier to inclusion is anything that prevents or hinders accessibility or the full participation of persons with disabilities. Different types of barrier are described in Section 2.3.

The UN definition makes clear that disability is not only about the impairment of an individual person but also about how they interact with the world around them and the barriers that they have to deal with. Figure 2.1 illustrates this important relationship.

Figure 2.1 Disability results from impairment in a part of someone’s body combined with the barriers created by the environment in which they live.

It is this interaction between different types of impairment and the various barriers that cause a person to be disabled in society. This means that persons with disabilities are not all the same and one person with a disability can have a completely different experience from another. Further variation arises from the use of assistive devices and other aids, if they are available. An assistive device is any device that helps someone to do something that they might not otherwise be able to do. Generally, the term is used for devices that help people overcome impairment. For example, wheelchairs and crutches can improve mobility for some people with physical impairments and hearing aids can help some people with a hearing impairment.

2.2 Types of impairment

Impairments can be classified into four main groups: physical, sensory, psychosocial and intellectual. Some are present from birth, while others may be acquired later in life as the result of illness, injury or just from getting old. Remember also that some people may be affected by more than one impairment.

Physical impairments

These are conditions that cause difficulties in walking and other movements such as holding or grasping and may affect coordination and the ability to perform physical activities. Several different diseases can affect joints or muscles of the arms or legs such as polio, which causes paralysis. Other conditions affect the nervous system, for example spinal injury, stroke and leprosy. This group also includes loss of limbs.

Sensory impairments

These are impairments that affect sight, hearing or speech.

• Visual impairments are partial or total loss of the ability to see, and therefore read. Visual impairments can range from low vision, meaning the person has some limited or poor sight, through to total loss of vision.
• Hearing impairment refers to various degrees of loss of hearing. Mild hearing loss means the person has difficulty with very quiet sounds such as whispering. People with moderate hearing loss find it difficult to join in a normal conversation and severe hearing loss means only loud sounds can be heard.
• Speech impairments affect the ability to communicate. People with this type of impairment may have difficulty with the production of sound, for example, they may be unable to produce clear and distinct words with their voice or may stammer.

Psychosocial impairments

Psychosocial impairments include many different mental health conditions that affect a person’s behaviour and their ability to function and participate in society. Examples include anxiety, depression, and schizophrenia. This sort of impairment may be acute (episodes that may be severe but are short-lived) or chronic (continuous or lasting a long time).

Intellectual impairments

Intellectual impairments refer to many different types of lifelong limitation that may affect a person’s ability to understand new or complex information, to communicate with other people or to look after themselves. People affected by this sort of impairment may require supervision from someone else to help them with daily activities.

2.3 Barriers to inclusion

The other component of disability is the barriers that exist in the world around us. These can be categorised into four main groups, shown in Figure 2.2 and described in the following sections.

Maximise

Figure 2.2 Barriers to inclusive WASH.

2.3.1 Physical barriers

Physical barriers (also known as environmental barriers) can be natural or technical. Natural barriers include uneven, rough or steep paths on muddy ground and long distances that often need to be walked to reach a water source. Technical barriers (also known as infrastructural barriers) such as slippery floors and steps are created by poor, non-inclusive design and construction. Physical barriers are an accessibility problem everywhere, not just for WASH services (Figure 2.3).

Figure 2.3 A wheelchair user facing a physical barrier.

Physical barriers often force disabled people into unhygienic and dangerous practices. For example, wheelchair users like the young woman in Figure 2.4 have to crawl on the floor of latrines because entrances have steps or are too narrow.

Figure 2.4 This young woman has to leave her wheelchair outside the latrine cubicle and drag herself across the dirty floor because of the physical barrier created by the step at the entrance.

Some physical barriers can be removed with appropriate inclusive design that recognises the importance of accessibility. For example, the problems caused by steps (if there are only a few) can be overcome by constructing a ramp. A ramp is a sloping surface joining two different levels, for example at the entrance of a building. Ramps can be made of cement or wood and must not slope too steeply. Ideally the gradient (slope) of the ramp should be a minimum of 1 in 12 (Figure 2.5).

Figure 2.5 The slope of a ramp should not be steeper than 1 in 12.

2.3.2 Social and attitudinal barriers

You will recall from Study Session 1 that one of the main reasons for exclusion is the attitudes of other people. In Ethiopia, social and attitudinal barriers of shame, fear, prejudice against disabled people and the mistaken belief that disability is a curse cause the greatest problems. Persons with disabilities may be kept hidden at home where they are separated and isolated. This may be because the family feels ashamed or sometimes because they are overprotective of a disabled family member and want to shield them from the stares and abuse of other people.

Social barriers may prevent people with disabilities from accessing WASH facilities at home and in the community. They may also keep them away from community meetings, often adding to physical barriers if the meeting place is inaccessible. The organisers of the meeting may not be aware of the importance of inclusion and not understand why persons with disabilities should attend these meetings. Or they may not think that people with disabilities have the same WASH needs as everyone else, for example many people believe that girls with disabilities do not menstruate. This excludes them from participation in discussions and decisions about WASH services and other community issues. These social and attitudinal barriers are not only found at the community level, but also in the attitudes of WASH sector actors at all levels (COWASH, 2017).

2.3.3 Institutional barriers

In Study Session 1 you learned that inclusion of marginalised groups has not been a priority in government policy until relatively recently. Institutional barriers refer to policies, programmes and directives that do not include clear statements about inclusion and how it should be achieved. It can also mean a lack of enforcing mechanisms where these statements do exist but are not implemented, for example, there are many public buildings without ramp access even though this is required by legislation.

Institutional barriers also include limited knowledge and skills among the policy makers and designers. (You may recall this was one aspect of lack of resources identified as a reason for exclusion in Study Session 1.) The relevant ministries/bureaus responsible for water and sanitation are rarely aware of the issues of exclusion and inclusion. Many WASH sector actors are unaware of the barriers that prevent participation and access to WASH facilities, and they lack training in inclusive WASH. The COWASH Disability Inclusion Guideline (COWASH, 2017) also suggests that more could be done if the Ministry of Labour and Social Affairs (MoLSA) and the Disabled Persons Organisations (DPOs) strengthened their presence and activity at woreda level and their links with the WASH sector to address issues of inclusive WASH.

2.3.4 Communication barriers

Figure 2.2 shows a fourth group of barriers that prevent effective communication with and by people with disabilities. These barriers vary with different types of impairment. For example, visually impaired people need non-visual resources to receive information such as listening to audio recordings or, if they are able to, reading from Braille. They face a communication barrier if these alternatives are not available. (Braille is a system of writing using raised dots on a page that represent different letters. The letters are read by running your fingers over the paper so you can feel the dots. The system is named after its inventor, Louis Braille.) Similarly, deaf people rely on visual communication such as signposts to help them find their way. If they are able to use and read sign language they may not be able to communicate effectively if a sign language interpreter is not available. People with intellectual impairments may need messages in a simple or visual format, or communication to come through carers who can help them understand.

2.4 Using positive language to communicate with persons with disabilities

Negative attitudes and mistaken beliefs about disability can influence the language used to talk to or about people with disabilities and this also creates a communication barrier. Language is a powerful tool in any society. It can have a positive influence and make people feel valued, confident and included, or it can be negative and inconsiderate and cause hurt or offence, making someone feel rejected, belittled and excluded.

One important principle to remember for positive terminology is that the person comes first, not the disability. Another is not to assume that everyone with a disability is the same. Table 2.1 shows some of the inappropriate negative terms and acceptable positive terms that can be used when describing persons with disabilities.

Table 2.1 Positive and negative words to describe persons with disabilities (adapted from COWASH 2017).

Negative terms	Positive terms
Disabled, handicapped, crippled, person who is physically challenged, deformed person	Person with a disability
Normal people, able-bodied, healthy	Person without a disability
Mentally handicapped, mentally retarded, mentally defective, mentally challenged, insane, crazy	Person with a mental health illness or disability
Wheelchair confined or bound	Person who uses a wheelchair; wheelchair user
The blind	Person with a visual Impairment; blind person
The deaf	Person with a hearing impairment; deaf person
Mute/dumb	Person with a speech disability

If you are talking to someone with a disability, you may need to make some adjustments to accommodate their needs. This will vary with different types of impairment. The important point is to treat them with the same respect you would for anyone else. Box 2.1 has a few tips that will help you positively interact with persons with disabilities in your community.

2.5 Persons with disabilities in Ethiopia

How many people with disabilities are there in Ethiopia? Collecting this sort of data is challenging in any country. One reason is the difficulty of defining what is meant by a disability. You can see from the previous sections that there are many different categories of impairment and disability. Different countries, systems and surveys do not all use the same methods and definitions. Another reason is that, when responding to surveys and questionnaires, people have different understandings of disability and are often reluctant to report that they or a family member is disabled because of negative attitudes and stigma.

In Ethiopia, there have been several estimates of the number of persons with disabilities all giving different results (COWASH, 2017; Metiku, 2008; JICA, 2002; DCDD, n.d.). Using statistics from the 2007 national census, the National Plan of Action (MoLSA, 2012) estimated that in 2010 there were approximately one million people with disabilities in Ethiopia. Other estimates are much higher. According to the World Report on Disability (WHO/WB, 2011), 17.6% of the adult population in Ethiopia had a disability (data based on a house-to-house survey).

Nine million is a very large number! But even this is not the complete picture. WHO/WB data did not include children and was gathered by house-to-house survey and so did not include homeless people. The actual number could be significantly higher.

Whichever estimate we use, there are certainly millions of people in Ethiopia who live with a disability of some sort. 95% of these people are estimated to live in poverty and many depend on family support and begging for their livelihoods. It is probable that the majority of these people live in rural areas where access to basic services including WASH is limited (MoLSA, 2012; ILO, 2013).

2.6 Collecting data about persons with disabilities

There are a number of reasons why data collection about people who have a disability and their access to WASH services has not been a priority in the past. You have already read about some of these reasons:

• Disability issues are not mainstreamed in most government policies and programmes so they are overlooked and funds are not allocated to them.
• Lack of awareness and understanding of disability, impairment, barriers and the adjustments that need to be made to be inclusive.
• Not enough people with appropriate training on methods of data collection.

Undertaking research to collect data about the situation of people with disabilities and their inclusion, or exclusion, in WASH is an important task because the absence of data adds to the invisibility of the problem and the general lack of awareness.

2.6.1 Challenges of measuring inclusion in WASH

Collecting data often requires the use of surveys and questionnaires. Preparing the questionnaire and thinking of the right questions to be asked can be difficult.

Where there are variations within a data set, the data is more informative and useful if it is disaggregated. To aggregate means to combine or group together so disaggregated data are data divided into separate categories. For example, you read above about various estimates of the total number of people with disabilities in Ethiopia. To be useful for planning and implementing inclusive services for all, the total number does not provide sufficient detail and a more specific breakdown is needed. Disaggregated disability data have separate records for different types and degrees of disability among a population. It may be useful to further disaggregate data by sex (separate records for males and females) and by age (separate records for different age groups), in which case the questionnaire would need to include the right questions to produce these data.

2.6.2 Tools for data collection

The need for accurate and comparable disaggregated data led to the development of standardised questions to be used in censuses and surveys. By using the same set of questions, the results of different surveys can be meaningfully compared. This principle was recognised by the United Nations Statistical Commission and led to the development of the Washington Group on Disability Statistics. This group has developed sets of standard questions that can be used in English or translated into other languages. The ‘short set’ on human functioning is shown in Box 2.2. Note the questions ask about difficulties with six core functions but do not use the word ‘disability’.

(Note: For further information about how to use the Washington Group questions including methodology, question sets, implementation guidelines, etc., see http://www.washingtongroup-disability.com/)

The Washington Group questions provide disaggregated data about the number of people with different types of disability but they are not specific to inclusion in WASH. Measuring the inclusiveness of WASH facilities requires additional data collection and, although this was rare in the past, it is gradually being incorporated in data gathering activities. For example, the Ministry of Education published a report in 2017 of a schools’ WASH mapping exercise to collect data from all regions of Ethiopia about the numbers and types of latrine facilities in schools. The survey reported that 35.9% of the 33,232 primary schools in Ethiopia had latrines that were accessible to children with physical disabilities (MoE, 2017a).

The lack of accurate data about people with disabilities and inclusion is likely to change in the future. The Sustainable Development Goals put greater emphasis on inclusion of people with disabilities in the targets to end poverty and hunger. This will provide an incentive to improve monitoring and reporting about disability and inclusion at national and international levels.

Summary of Study Session 2

In Study Session 2, you have learned that:

1. ‘Disability’ refers to a functional limitation as a result of impairment and the interaction with barriers in the environment.
2. Impairment is the loss of a function of the body. Types of impairment can be categorised as physical, sensory, psychosocial and intellectual.
3. There are several types of barrier that cause exclusion including physical, social/attitudinal, institutional and communication barriers.
4. Care is needed when talking to or about people with disabilities. Disrespectful language can cause offence and can be a barrier to full participation.
5. Estimates of the number of people with disabilities in Ethiopia vary but there are at least one million and probably more.
6. Collecting data about people with disabilities is challenging. The Washington Group’s short set of six questions are standard questions that provide comparable data about disability.

Self-Assessment Questions (SAQs) for Study Session 2

Now that you have completed this study session, you can assess how well you have achieved its Learning Outcomes by answering these questions.