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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.

  • Which of these four different types of impairment are most likely to affect inclusion in WASH?

  • Physical impairment affecting a person’s ability to walk would limit access to WASH facilities if there are steps or steep slopes; impairments affecting the hands could prevent someone turning a tap or holding a water container. Visual impairment could make it difficult for someone to walk safely to a facility and use it. Intellectual impairments may make it difficult for someone to understand about good hygiene practices. Other types of impairment may not affect accessibility to services directly but they could all prevent someone from participating in discussions and meetings. Remember from Study Session 1 that inclusion means both access to services and participation in processes.

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.

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.
  • What could you do to remove the physical barrier faced by the young woman in Figure 2.4?

  • You could put a wooden ramp over the step so she could wheel her chair to the latrine door. But that still may not solve the problem if the door is too narrow and the space inside the latrine too small for her chair.

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 termsPositive terms
Disabled, handicapped, crippled, person who is physically challenged, deformed personPerson with a disability
Normal people, able-bodied, healthyPerson without a disability
Mentally handicapped, mentally retarded, mentally defective, mentally challenged, insane, crazyPerson with a mental health illness or disability
Wheelchair confined or boundPerson who uses a wheelchair; wheelchair user
The blindPerson with a visual Impairment; blind person
The deafPerson with a hearing impairment; deaf person
Mute/dumbPerson with a speech disability
  • Look at the two columns in Table 2.1. What do you notice is the main difference between them?

  • The positive terms all use the word ‘person’. The negative terms focus only on the disability; the person with the disability is generally ignored.

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.

Box 2.1 Tips for talking to people with disabilities

  • Speak directly to the person rather than to their assistant, carer or interpreter, if they have one.
  • If you think they may need help, ask them first before you take any action.
  • Refer to a person’s disability only when it is related to what you are talking about.
  • Be careful to use positive words and phrases (see Table 2.1).
  • When talking about toilets or other facilities adapted for people with disabilities, use the term ‘accessible’ rather than ‘disabled’ or ‘handicapped.’
  • Don’t invade someone’s personal space by touching their wheelchair, crutches or cane; don’t take hold of the arm of a visually impaired person to guide them without asking if that’s what they would like you to do.
(Adapted from COWASH, 2017 and NYLN, 2006)

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).

  • Ethiopia’s population in 2018 is approximately 106 million of which roughly half are adults over the age of 18. Using the proportion of 17.6%, estimate the number of adults with disabilities in Ethiopia.

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.

  • Think back to previous sections in this study session and identify three reasons why trying to collect data by asking ‘Do you have a disability?’ may not give accurate results.

  • You may have thought of others but possible reasons include:

    • There are different definitions and understandings of what disability is.
    • There are many different types of impairment with different levels of severity; these variations would not be revealed by this question.
    • People may be reluctant to report that they or a family member are disabled.

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’.

Box 2.2 Washington Group’s short set of questions on disability

The questions ask about difficulties doing certain activities because of a health problem.

  1. Do you have difficulty seeing, even if wearing glasses?
  2. Do you have difficulty hearing, even if using a hearing aid?
  3. Do you have difficulty walking or climbing steps?
  4. Do you have difficulty remembering or concentrating?
  5. Do you have difficulty (with self-care such as) washing all over or dressing?
  6. Using your usual (customary) language, do you have difficulty communicating, for example understanding or being understood?

For each question, the respondent has a choice of four possible replies:

  • a.No – no difficulty
  • b.Yes – some difficulty
  • c.Yes – a lot of difficulty
  • d.Cannot do at all
(Adapted from Washington Group on Disability Statistics, n.d.)

(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.

SAQ 2.1 (tests Learning Outcomes 2.1 to 2.4)

Which of the following statements are false? In each case, explain why it is incorrect.

A. The words and language used when communicating with persons with disabilities doesn’t affect their inclusion in WASH initiatives.

B. Many policy makers, regulators and WASH sector actors are unaware of the barriers that prevent participation and access to water and sanitation facilities by persons with disabilities.

C. The words disability and impairment can be used interchangeably because there is no major difference between the two.

D. Persons with disabilities all share problems with accessibility and exclusion. Therefore, when collecting data, it is important to aggregate them all together as one group.

Answer

A. is false. The language and words used when communicating with persons with disabilities affect their inclusion in society. Disrespectful language can undermine the confidence of persons with disabilities.

C. is false. People sometimes use disability and impairment as if they mean the same thing but they do not. Impairment is a limitation in body function, whereas disability results from a combination of limitation in body function and external barriers.

D. is false. There are many different types of impairment and disability so, to be useful, data about persons with disabilities needs to be disaggregated (separated) into different categories.

SAQ 2.2 (tests Learning Outcomes 2.1 and 2.2)

Insert the following words into the spaces in the sentences below:

assistive devices; barriers; intellectual; physical; psychosocial; sensory

  • a. Difficulties in walking and other movements are described as ……………….impairments.
  • b. ……………… impairments include those that affect a person’s ability to communicate with other people or to look after themselves.
  • c. Some physical ……………….. can be overcome by use of ………………….
  • d. ………………. impairments affect sight, hearing or speech.
  • e. Conditions that affect a person’s mental health, behaviour and the ability to function in society are called ……………….. impairments.

Answer

  • a. Difficulties in walking and other movements are described as physical impairments.
  • b. Intellectual impairments include those that affect a person’s ability to communicate with other people or to look after themselves.
  • c. Some physical barriers can be overcome by use of assistive devices.
  • d. Sensory impairments affect sight, hearing or speech.
  • e. Conditions that affect a person’s mental health, behaviour and the ability to function in society are called psychosocial impairments.

SAQ 2.3 (tests Learning Outcome 2.3)

Yeyitu is 17 years old and an elementary school student. Her parents earn an average income from vegetable farming. Yeyitu was born with a visual impairment. She grew up hearing that her impairment happened because her parents were being punished by God. Her parents kept her at home and did not send her to school until she was quite old. While she is at school, it is very difficult for Yeyitu to use the latrine. She frequently falls over when walking to the latrine block because there is no proper path and there are rocks which she finds hard to avoid, even though she has a white cane. When she reaches the latrine, there are no signs in Braille to help her enter so she has to feel along the walls using her hands. There are no handwashing facilities. Being exposed to this unhygienic toilet frequently makes Yeyitu ill with diarrhoea. Using the school latrine is so difficult that Yeyitu prefers to use the toilet at home and for that reason, she avoids eating and drinking during school hours.

Briefly explain the barriers faced by Yeyitu.

Answer

Yeyitu experienced social and attitudinal barriers from her parents followed by physical and institutional barriers at school. The physical barrier is characterised by the inaccessible environment (lack of path and rocks). Institutionally, the school was not following a policy or guidelines to include students with disabilities. Yeyitu also experienced communication barriers because there were no Braille-translated signs at school.

SAQ 2.4 (tests Learning Outcome 2.4)

Elsa was born with a physical impairment; both of her legs were paralysed. Her parents were shocked and did not accept the reality of the situation or support Elsa. As a child, Elsa never had the chance to go outside and play with her peers. If she did go out of the house, she usually crawled on her knees using plastic shoes to cover her hands. People in the community called her a cripple and made a dismissive sound with their mouth when she went out in public. At the age of 10, with support from a local NGO, Elsa fortunately was able to join formal education. The NGO also provided a wheelchair for her which made her life much easier. She is now able to join social activities but community members and her friends still describe Elsa as wheelchair bound. This makes her frustrated because she sees the wheelchair as a benefit but they see it as a problem and don’t understand all the many things she can do.

What are the negative words used to describe Elsa and how could this affect her emotionally?

Answer

The terms ‘cripple’ and ‘wheelchair bound’ are both negative terms that make Elsa feel frustrated, unappreciated and undervalued. These terms label her by her impairment and do not describe her as a person.

SAQ 2.5 (tests Learning Outcome 2.5)

What aspects of the Washington Group’s short set of six questions make them a useful tool for collecting data about disability?

Answer

The Washington Group’s questions are a useful tool because they:

  • are a standard set of questions that can be used in any country so produce comparable data
  • provide disaggregated data for different types and degrees of disability
  • are open questions that do not include the word disability.