Introduction
Advocacy has been mentioned as a suggested activity throughout the CBR guidelines. Advocacy can be undertaken in different ways and by different people, e.g. self-help groups or disabled people's organizations might advocate as a group to influence decision-makers to create change and ensure inclusive policies and programmes for people with disabilities. This element however focuses on self-advocacy, meaning individuals speaking up for themselves.
Successful advocacy depends on important messages being communicated and heard. However many people with disabilities experience barriers to communication, so frequently their voices are not heard and they have few opportunities to influence decisions on the issues, policies and services that affect their lives (4). The Convention on the Rights of Persons with Disabilities highlights the importance of communication for people with disabilities. Article 9 calls on States parties to ensure that persons with disabilities have access on an equal basis with others to”… information and communications, including information and communications technologies and systems …” and Article 21 confirms the right to”… freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others and through all forms of communication of their choice …”(5).
Self-advocacy and effective communication are an important part of the empowerment process for people with disabilities. This element highlights the important aspects of each of these and provides basic suggestions for activities which can be carried out by CBR programmes.
BOX 3India
Hansa's journey towards a productive life
Hansa was born into a rural family in the remote village of Dhanki in Gujarat, India. Her family were labourers, earning wages on a daily basis. Profoundly deaf, with low vision and an intellectual impairment, Hansa was labelled the “Lord's curse” by the villagers. The family was shunned and their mere presence in the fields or other people's homes was seen as bad luck. As Hansa's family was dependent on the work they found each day for their daily food, this stigma and discrimination became a heavy burden that affected the whole family.
Things began to change for Hansa and her family when a CBR worker trained by Sense International began providing support. During regular visits to Hansa's home, the CBR worker assisted Hansa to begin exploring her environment through games and activities. With time, Hansa began responding and making progress. She learnt how to communicate with sign language, count with beads and do simple arithmetic. She began to help her mother with household chores. A previously unkempt and reclusive Hansa transformed into a well-groomed and confident adolescent.
It took a while for the villagers to change their attitudes, but slowly things began to change. Farmers began to employ Hansa's parents again and they took notice of Hansa's skills and abilities. Hansa is now a farm hand and contributes to her family's income. The family is again invited to social and community events and Hansa has formed a group of friends of her own age.
Goal
People with disabilities are able to speak out for themselves.
The role of CBR
The role of CBR is to assist people with disabilities to develop advocacy and communication skills, and to ensure that their environment provides appropriate opportunities and support to allow them to make decisions and express their needs and desires effectively.
Desirable outcomes
People with disabilities and their families have improved access to information and communication resources.
Communication barriers for people with disabilities are reduced and/or eliminated.
People with disabilities and their families represent themselves in their respective communities.
CBR personnel are effective communicators and share information with all stakeholders including those who have communication difficulties.
Key concepts
Self-advocacy
What is self-advocacy?
Most people use self-advocacy every day to fulfil their personal needs. Self-advocacy is about people having a voice of their own. It means knowing about their rights and responsibilities, speaking up for their rights, and being able to make choices and decisions about their lives.
Why is it important?
Self-advocacy is an important part of empowerment. Many people with disabilities spend much of their lives not being listened to and being told what to do. Decisions are usually made for them by others. By learning self-advocacy skills, people with disabilities can learn to assert their rights, take control of their lives, and make the best decisions for themselves. Self-advocacy can be as simple as people with disabilities making choices about what to eat and what to wear, or at another level, it may mean that they speak out publicly about issues which are important to them such as commenting about a service they have used.
BOX 4
Effective self-advocacy
Children with disabilities played an important role in negotiations during development of the Convention on the Rights of Persons with Disabilities. In January 2006, during the sixth round of negotiations, a group of children from Bangladesh, China and the United Kingdom went to New York to present their perspectives on why the Convention needed to include specific measures to protect their rights. In a widely circulated written statement, they highlighted the need for recognition of the importance of ending institutionalization, challenging violence and abuse, ensuring access to services and information. At the Convention's signing ceremony in March 2007, two young disability advocates from Nicaragua and Armenia reminded delegates of the need to pay special attention to the situation of children with disabilities in the implementation of the new Convention. The participation of these young people affirmed that children with disabilities can be effective advocates for their own rights and are entitled to be involved in decisions that affect them (6,7,8,9).
What support is required?
In many settings people with disabilities experience stigma and discrimination, and it can be very difficult to voice their opinions, wants and needs. Often people with disabilities will need support to learn self-advocacy skills (see Suggested activities). While self-advocacy is the ultimate goal for people with disabilities, in some situations they may request or need the support of an advocate. An advocate might be a family member, friend, member of a disabled people's organization, an advocacy volunteer from the community, or a CBR staff member. An advocate might assist a person with a disability to access information, provide support at appointments and meetings, write letters about important issues and speak on their behalf in difficult situations.
Communication
What is communication?
Communication is the way information and messages are transferred from one person to another and are the means by which social relationships between individuals and communities are built and maintained. There are three key ingredients for effective communication: means, reason, and opportunity.
The means: refers to how a message is sent. This may occur via spoken or written words, sign language, and/or assistive communication devices. People require access to the means of communication that best suits their needs (see
Health component: Assistive devices).
The reason: refers to why communication takes place. The many reasons include: expression of practical needs, e.g. asking for a drink; expression of thoughts, opinions and feelings; to ask someone their name, to make friends or tell a joke.
The opportunity: people need frequent opportunities to communicate with others. Many people with disabilities do not have the opportunity to communicate, e.g. children with disabilities are often hidden when visitors come to the family home, an adult who cannot speak after a stroke may be excluded from family decision-making, a deaf person is unable to participate in a council meeting because a sign language interpreter is not available. Limited opportunities can affect the learning and development of communication and other skills.
Even without a voice people can communicate
While the concept of self-advocacy for people with disabilities is about having a voice of their own, it does not necessarily mean literally having a voice. Some people with disabilities cannot talk or communicate easily with others. Physical, auditory, visual and intellectual impairments can affect the way people communicate and the ease with which others are able to understand them. However, it is important to understand that everyone has the ability to communicate even if they do not have the ability to speak – communication does not just include the spoken word.
A person with a disability can still express his/her likes and dislikes, wants and needs, in ways other than words. Communication also includes “… display of text, Braille, tactile communication, large print, accessible multimedia as well as written, audio, plain-language, human-reader and augmentative and alternative modes, means and formats of communication, including accessible information and communication technology”(5) (see Health component: Assistive devices).
BOX 5Viet Nam
Trang learns to communicate
Trang is 14 years old and lives with his family in a remote hill village. Trang has cerebral palsy, which has resulted in a communication impairment. His family and friends are unable to understand his speech and he is unable to use sign language as his motor movements are uncoordinated. Most people think Trang has an intellectual impairment because of his limited communication skills. Trang's aunt approached the CBR programme and asked for help. CBR personnel helped create a communication board, which contained pictures of the most important activities and items in Trang's life. Trang now uses this board as well as pointing with his eyes to express his needs and exchange information and converse with his family and friends. CBR personnel have also encouraged his family to start teaching Trang to read.
Communication barriers
Self-advocacy also means that people with disabilities need to be listened to, and it is important to identify barriers to communication. There are four major barriers: physical barriers, e.g. long distances or environmental distractions, barriers of meaning, e.g. the use of complex words and specialized vocabulary, attitudinal barriers, e.g. avoidance of communicating with someone who has difficulty expressing her/himself, due to impatience and arrogance, and positioning of information e.g. inappropriate timing or too much information. For communication to be effective, it is important to identify those barriers which are present and take steps to overcome them.
Suggested activities
To support self-advocacy and develop effective communication to empower people with disabilities, CBR personnel need to address not only the individual and the environment, but also their own ability to communicate.
Carry out a basic communication assessment
Resources, such as Let's communicate: A handbook for people working with children with communication difficulties (10), can provide comprehensive information about communication assessment. Some basic considerations when assessing the quality of communication are as follows.
What method/s of communication is/are currently being used?
How well are they being used? (consider the skills of people both with and without disabilities).
Is the communication system understood by everyone?
Does the nondisabled person really understand the needs of the person with disability?
Who does the person with disability usually communicate with?
Why is the person with disability communicating? Is it to join in, express a practical need, and/or express his/her feelings?
What kinds of opportunities to communicate does the person have? Does he/she have many people to talk to or is he/she left alone?
Are there any other barriers to good communication?
Does status, power and role influence communication? For example, does the woman with disabilities talk in front of the man? Is the family embarrassed to let their disabled family member communicate?
Provide support to develop communication skills
CBR personnel will need to work closely with people with disabilities and their families to ensure that they are able to develop communication skills. Support will be based on individual needs and circumstances and may be provided directly by CBR personnel or by others. Again resources, such as Let's communicate, will provide many helpful suggestions. Following the identification of people with communication impairments, CBR personnel may:
facilitate referrals to specialist services where they exist, e.g. speech and language therapy;
ensure families are aware that speech may not be possible for some people and provide information about other forms of communication, e.g. sign language, communication boards;
ensure that people who require hearing aids are provided with appropriate information about availability, fitting, care and use;
teach sign language or provide information about where to access sign language instruction;
encourage inclusion of people with communication difficulties in everyday activities and experiences (e.g. visits to the market, cooking, cleaning, fetching water) and teach simple words, phrases and gestures that can be used in the community;
link people to groups/clubs which provide opportunities for social interactions, e.g. deaf clubs, stroke clubs, sports clubs for people with disabilities, inclusive playgroups.
BOX 6
Stephanie hears a new world
Children who have hearing impairments may need hearing aids to help them communicate with their families, friends and teachers. CBR programmes can provide assistance in accessing aids, and provide instruction in how to use and maintain them. CBR programmes may also find out whether low-cost batteries are available and promote the use of sign language if appropriate.
Stephanie's hearing impairment went undetected for many years. She lived in virtual isolation, communicating only with her mother. A volunteer doctor from a local CBR programme identified that her hearing loss was the result of a chronic ear infection. She was provided with treatment for the infection and later fitted with a hearing aid. Stephanie started going to primary school, which opened up many new horizons for her. She is no longer isolated, and interacts with her friends on a daily basis.
Address communication barriers
CBR programmes can help reduce or remove communication barriers in the environment by:
encouraging positive attitudes in the home environment to maximize communication opportunities for children and/or adults with disabilities;
identifying key people with whom people with disabilities can communicate, and who are interested in what people with disabilities have to say;
sharing information with others about people's preferred means of communication; it is important to develop a means by which people with disabilities can do this independently, e.g. a CBR programme could develop a “my communication sheet” for a person with a disability which tells others about the best way to communicate with him/her;
teaching family and community members communication strategies that may be useful for people with disabilities, e.g. allowing extra time for communication, and using simple language, gestures, signs, drawings or Braille;
providing suggestions about how the environment might be adapted to maximize communication, e.g. a quiet space to talk for a person with a hearing impairment, adequate light for a person who lip-reads;
promoting the development of a pool of trained sign language interpreters – it may be helpful to partner with a disabled people's organization to do this;
using public meetings or the media to increase community awareness about the challenges faced by people with communication problems;
together with disabled people's organizations, promoting the need for and use of accessible information and communication formats in all activities, such as training, community events and development programmes.
Box 7Philippines
Signing for a better future
On the island of Bohol in the Philippines, the local CBR programme introduced basic sign language training for people with hearing impairments, their families and community members. In 2008, over 200 community members, ranging in age from eight to 68 and from all walks of life, learned to sign, and have now gone on to teach sign language to their families and friends. This initiative aims to raise awareness about deaf culture and encourage people to respect and communicate with deaf people.
At the end of one of the four-week training courses, the trainers (mostly deaf adults) were invited to conduct similar sign language training programmes at the local university. The university paid them to conduct these training programmes. Three of the most outstanding university students have now joined the CBR project as teachers of deaf high-school students.
Provide support for self-advocacy
CBR programmes should:
remember to ask people with disabilities what they want;
provide people with information about their disability;
teach people about the social model of disability;
provide information to people with disabilities about their rights and responsibilities;
include people with disabilities in decision-making for the CBR programme;
provide people with information about the services that exist in their communities;
link people with disabilities to self-help groups and disabled people's organizations where they exist in the community.
Ensure CBR personnel are effective communicators
To support people with disabilities through advocacy activities, CBR personnel need to be effective communicators. CBR personnel are required to interact with people from many different backgrounds and walks of life, and need to be able to communicate information clearly, especially when topics are difficult or sensitive, where there are class or status differences, where a common language is not shared, or where there are differences in literacy level. CBR personnel need to:
encourage a communication-friendly environment and support people with communication difficulties to express themselves;
speak the same languages and dialects as the local communities;
know the local sign language, and how to use alternative ways of communicating;
understand and respect local cultural, class and caste differences, and be a good role model by communicating respectfully with people with disabilities, women and other marginalized groups;
communicate regularly with various stakeholders in the health, education, livelihood and social sectors, and facilitate dialogue during stakeholder meetings;
know how to use the media for communicating with the public.
