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CBR NEWS The international newsletter on Community-based rehabilitation and the concerns of disabled people

No. 27 January-April 1998

Tools for raising awareness: Working with the media Learning by doing Choosing and using words Developing materials for disability awareness

Published by

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COMMENT News from CBR News

Raising awareness This issue of CBR News focuses on a challenge faced by all community-based rehabilitation programmes - how to raise awareness and change community attitudes about disability. In all societies attitudes are formed when people are very young and attitudes are sometimes very difficult to change. This is why it is very important to explore ways to change attitudes and to treat disabled people with respect and dignity.

In this issue we focus on the importance of positive language and the role of mass media, such as press and radio. But there are many ways that people can communicate knowledge and awareness. They include using traditional media, such as music, dancing, drama and puppets, as well as modern media such as posters, slides, television and videos. Sometimes the most direct methods are the best -sharing information simply and directly through spoken word, gestures and expressions.

Whatever tools you choose to use in your project, your aim should be to ensure that people with disabilities are involved both in the message itself and how it is presented. In this issue, we present two practical exercises you could use with a group, either to raise community awareness or as a training exercise for people working in information and communication projects.

We believe that there must be many practical communication tools being used by CBR projects. CBR News is keen to share your knowledge — what does and does not work. Please write to us to exchange your views and experiences.

Heather Payne, Disability Programme Coordinator, Healthlink Worldwide.

Cover picture Music can communicate knowledge and awareness, as well as being fun. These young men are at Jairos Jiri Centre for the Blind, Kadoma, Zimbabwe. Photo: Liba Taylor/ Panos Pictures

After 21 years of information work on health and disability, AHRTAG is changing its name. Our new name, Healthlink Worldwide, better reflects the way we work. As before, community-based rehabilitation and the rights of disabled people (including their right to equal and accessible health services), remain vital to our work.

Healthlink's Disability Programme has a new coordinator, Heather Payne. Heather has professional qualifications in occupational therapy and social development. She has worked in India and Nepal as well as Britain's National Health Service and a local authority social services department. Heather's main tasks are to liase with partner organisations who publish regional editions of CBR News, raise programme funding, and determine programme strategy and direction in line with Healthlink's strategic plan.

One of Healthlink's Indian partners is also changing its name. The Blind Men's Association of India is now The Blind People's Association (BPA). The name change reflects its wide range of work with men, women and children. BPA is now recording issues of Indian editions in English and Hindi on audio-cassette. It is also translating issues into Gujarati for recording on cassette. The

African readers who tuned in to the BBC World Service during April and May will have learned more about disability issues in Africa by following the new series, Worlds of Difference. The programmes have been developed in six languages: English, French, Hausa, KiSwahili, Portuguese and Somali. The programmes are not intended specifically for disabled people but to increase general awareness in Africa about disability. Each language series is different, reflecting the particular concerns and problems facing disabled people in the region. For example, the programmes in Portuguese (for Mozambique and Angola) focus on disability in the aftermath of war. KiSwahili covers Uganda, Tanzania, Kenya, Rwanda and the Democratic Republic of Congo (former Zaire). At the end of each programme, there is an address where listeners can write to obtain further information.

recordings are targeted at readers! South Asia. Readers outside this region who would like recordings in Hindi or Gujarati should contact Healthlink.

Healthlink is also pleased to announce that CBR News is now available in Bangla/Bengali. This edition is produced in partnership? Social Assistance and Rehabilitation for the Physically Vulnerable (SARPV) based in Dhaka, Bang The edition is primarily for readers in Bangladesh and India. Anyone outside this area who would like to see a copy should contact Healthlink (see page 12 for details).

AHRTAG has a new name:

The new name highlights the organisation's worldwide focus on health and describes its way of working: linking information and health

workers linking partners linking policy and practice.

Disability series on BBC World Service

The BBC English language booklet, Worlds of Difference, is available free from Healthlink Worldwide (see page 12 for details).

The addresses for information in other languages are:

French: WAFOD PO Box 2609 Bamako, MALI

Portuguese: SAFOD PO Box 2247 Bulawayo, ZIMBABWE

KiSwahili: Zanzibar Association of the Disabled PO Box 2043 Zanzibar, TANZANIA

Hausa: The British Council 10 Emirs Palace Road PO Box 3003 Kano, NIGERIA

CBR News No. 27 January-April 13,

Cultural understanding I am a health educator, responsible for a district of around 80,000 people. Many health workers concentrate on treatment and overlook the importance of education and changing attitudes. This is especially important when dealing with leprosy and other diseases that isolate people from their communities.

I believe that we have to educate the community on how to live with people affected by leprosy. This means understanding the cultural factors involved, both negative and positive.

By building on the positive factors, we can make society more accepting of people affected by leprosy. Rehabilitation and culture can work side by side. Mr Peter Tirang, Health Educator, Division of Health, PO Box 2056, Rabaul, ENBP, Papua New Guinea.

Social support is needed CBR News 26 on leprosy looked at many aspects. In our work we believe that treatment alone is not enough. People affected by leprosy and their families need social assistance and support.

This may take various forms depending on the local situation and can be provided through voluntary agencies and departments of social welfare.

Social assistance can include: • travel costs to and from the clinic • food, grain and clothing • children's education • vocational training and job

placement • business and income-generating • projects • resettlement costs for land and

housing. A particular problem is where former leprosy patients are forced to beg for a living. Agencies often ignore this aspect. However, we regard it as a social evil and are attempting to find ways to overcome it through appropriate social support. Chhabi Goudel, Rehabilitation Officer, Socio-Economic Services, International Nepal Fellowship, PO Box 28, Pokhara, Nepal.

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LETTERS

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porting children leprosy Ing Siwi (Love for Children) n's Home supports children with leprosy and children arents are leprosy patients. Our ot to isolate these children but

t them with treatment and their return to community life. ten-year period we have assisted ren affected by leprosy.

t children arrive at Tresno Ing m the leprosy hospital at

ng where they have been g treatment. Many are ncing reactions to earlier nt and need specialist treatment port. Their illness has meant ve had to leave school. At Ing Siwi children receive follow-up treatment from the hospital. After they have ed sufficiently, they attend hools. ng our first year, the local nity, especially the schools, luctant to accept the children. er, these attitudes started to after we began to give tion about leprosy and modern nt methods. An important n changing attitudes was seeing sical and mental progress of the n. None have been rejected by ools. Many have now left and gone to college or found bs. to Ismudjito, Yaxasan Penghibur, 1 Keling, Jepara 59454, ia.

Child development training Many thanks for CBR News 25 joint issue with Child Health Dialogue. This issue will be of great interest to our primary health care coordinator and village health workers who undertake their basic seven-week training with us. The article on child development is of particular interest as this topic forms an integral part of their course. Pat Mitchell, Director, Life Abundant Programme, Banso Baptist Hospital, PO Box 9, Kumbo, NW Province, Cameroon.

Overcoming obstacles I am a student of special education undertaking research into the integration of people with a mental handicap into the community. Recently I have been in the community with social workers, physiotherapists and field workers, experiencing what it actually feels like to be with disabled people and their families.

What I have observed in this short period is the huge number of obstacles faced by these groups. Assessment instruments and methods are not well developed or are unavailable. Access to vocational training is considered unthinkable. Educators, such as teachers, administrators and curriculum developers, continue with their old attitudes towards mental handicap.

I invite readers to give me information on how other CBR programmes have mastered these challenges, especially those programmes working with people with mental disabilities. Dawit Negassa, PO Box 150012, Addis Ababa, Ethiopia.

Write a letter and win a resource book All letters published in CBR News will win a Healthlink Worldwide manual. Choose between:

• How to Make Simple Disability Aids

• Personal Transport for DisabledPeople

When you write tell us which book you would like.

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Mass media includes newspapers, radio and television. 'Mass media' is defined by the Oxford Dictionary as: "a means of imparting information to, and influencing the ideas of, enormous numbers of people". This is a neutral definition. However, the use of friendly or offensive language, or accurate or biased stories, by a journalist or broad-caster can influence views of people or issues in a positive or negative way.

Does the mass media view people with disabilities positively or negatively'? With a few exceptions, their attitudes are deeply negative and their presentation biased or incorrect.

Negative attitudes are reflected in the use of damaging words to refer to people with disabilities. These include words and phases such as 'deaf and dumb', 'crippled', 'wheelchair bound", 'the lame', 'the infirm’, 'plight', 'paralysed', 'sufferers', 'deformed', 'blind beggars' and many more. These words are used by most journalists when writing about people with disabilities - some even seem to take pride in using them.

The media commonly depicts people with disabilities as hopeless and passive and always looking to charity for their livelihood. They rarely show disabled people's organisations working for equal opportunities, full participation,

independent living and economic self-sufficiency. Nor do they show disabled people taking part in everyday community activities.

The media needs to adopt a positive attitude about people with disabilities. This will take commitment and determination on the part of journalists. Attitudes are often difficult to change because people develop them at an early age. The mass media can play a powerful role in shaping public opinion and creating or changing attitudes through information and education. The media should highlight successes of people with disabilities, rather than focus on them only when they are in need of help. This will help to destroy the view that people with disabilities are a burden or a social liability.

Finally, disabled people themselves have a duty to try to change society's attitudes by their skills, their hard work, and their positive attitude towards life. They should not resign themselves to prejudice and disrespect from others or from the media. They need to challenge the media to present accurate stories, and positive, non-stereotyped images of disabled people.

Alexander Phiri is the Secretary General of SAFOD, PO Box 2247, Bulawayo, Zimbabwe.

Influencing the media

It is easy to complain that the media ignores disability issues. But it is your job to overcome media ignorance and ensure that they give positive coverage. You may be surprised by the response, particularly from local media who are keen to cover good local stories. The following activities are low cost and have the potential to reach a large audience.

• Issue a press release linked to disability events, taking place on a national holiday or International Day of Action. Possibilities include 8 March (International Women's Day), 6 October (International Day for the Rights of the Child) or 3 December (International Day Disabled People). The press release should be short (one A4 page is best). Include the name and logo of your organisation and contact details.

• Correct inaccurate, biased negative stories by writing to the editor. In your letter you should praise positive points and correct mistakes, supplying the corrections needed. Always be polite and never make sweeping, incorrect libellous remarks. Write to thank the editor when you receive good coverage: it may encourage further stories on disability.

• Meet with journalists and keep them in touch with your organisation's activities. Try to identify journalists with disabilities or who write regularly on disability, development, human rights etc. Keep journalists' name and contact details on file and send them press releases. Invite them to public meetings. Ask their advice on the best way to get media coverage.

• Aim to get publicity for all people with disabilities, not just your own projects or organisation This raises the profile of disability issues generally and makes it easier to cover disability in future.

Adapted from 'Working Together with the Media' (see page 12).

Muktar, who was injured by civil war, works for Xorriya newspaper in Somaliland.

CBR News No. 27 January-April 1

PRACTICAL EXCERCISE

Learning by doing This exercise helps to illustrate some of the differences between negative and positive media coverage. You can do the exercise in small groups, first taking one story and then the other. You might wish to look for real stories in your local or national papers. Remember that many real media stories are a mixture of negative and positive. You can do this same exercise with photos.

First read the item ‘The facts’ and then the two stories. Go through each story and pick out the words, phases and images used to give a negative or positive view and discuss why this is the case. Some points about each story are printed underneath.

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A group of people with different disabilities has set up a workshop to produce and sell jewellery. The workers need the income from sales to support themselves and their families. However, there is not much business at present.

The workshop needs to build a reputation for good quality products, increase sales and income, and train other workers. A story in the local press could help publicise the workshop.

Crippled and deaf-dumb make jewellery despite their handicaps

About 30 crippled, deaf, dumb and blinded poor people have started a jewellery workshop on the east side of Harambee Plaza. Most can't walk or sit straight and some have lost their arms or legs. One man who is confined to a wheelchair said that some people used to be beggars.

Now with all their problems and miseries between them, they will try to ignore their ugly fates and fashion some-thing beautiful. With utmost patience and cheerfulness, they sit all day long putting together necklaces, bracelets and rings to appeal to passers-by. To help them feel worthy, perhaps some charitable people could buy these trinkets.

Jewellery shop with a difference

A new jewellery workshop run by disabled people has opened on the east side of Harambee Plaza. The workshop employs about 30 adults with different disabilities. Following six months training in necessary skills, workers produce necklaces, bracelets and rings in modern and traditional styles.

Mr Sharif Mousaka, workshop manager, who uses a wheelchair, said: ‘before some of us had to beg for a living. Now we are working to support ourselves and our families. Our jewellery is well designed, beautifully made and competes well with other products in the market'. Mr Mousaka also said that customers who bring a copy of this story would receive a 10 per cent discount on their first purchase.

The facts Story 1 Story 2

The following points should be highlighted during the discussion Story 1

Headline Uses out-of-date, derogatory and patronising term: ‘crippled’, ‘deaf-dumb’ and ‘despite their handicaps’.

First paragraph Describes the workers as objects of pity by emphasising their physical condition rather than their abilities. The phase 'confined to a wheelchair' emphasises disability.

Second paragraph There are no facts at all in the first sentence; the journalist believes disability means misery and tragedy. The second sentence implies that people with a disability are more patient or cheerful than others, not that they have the same skills, abilities and emotions. The third sentence appeals to customer's charity, not to their interest or business sense.

Story 2 Headline

First paragraph

Second paragraph

Emphasises the new project, not the disabilities of the workers. It tries to stimulate people's curiosity - what is different about the workshop? Gives the facts without emotion or drama. It does not overemphasise the worker's disabilities but establishes that they are responsible adults who have undergone training. The workshop is described in business terms rather than as a charity. Interviews and quotes the manager, mentioned in passing as 'a wheelchair user', by name, enabling him to put his point of view. He uses this opportunity to promote the business and reassure the customer that products are professionally made. The third sentence provides an incentive for the reader to become a customer.

Adapted from Working Together with the Media' (see page 12 for details).

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The BBC World Service brings this man's words from Mozambique to a mass audience.

The workshop covered areas such as using as field recorder and editing equipment, as well ideas on how to make items interesting to the audience. As the group found it difficult to use public transport, they arranged to meet each day outside Radio Zibonele for transport to the training centre.

Today Xhasanani are running their own programme on Radio Zibonele. It covers many different types of disability and the rights of disabled people. Topics raised in the programmes include:

1. Relationships between people with disabilities and people who are not disabled 2. Family relationships, including fears and attitudes 3. Entertainment and sport, available for and accessible to, disabled people. 4. Feelings about, and experiences of, employment, sexuality and loneliness 5. Health care and ways to prevent disabilities.

Thanks to Barbara Meyer, MTC Radio Unit; and Harold Manciya and Michael Mpahlwa, c/o National Progressive Primary Healthcare Network, PO Box 34572, Groote Schuur 7937, South Africa.

James Cullen is a disc jockey from Freetown, the capital of Sierra Leone in West Africa. He is also blind. While working for a government-run radio he became increasingly frustrated by the way disabled people were regarded and by the political bias he

witnessed in the media. 'By 1984 I decided that I must create an independent mouthpiece for disabled people', he explains.

For the next decade, Cullen fought to realise his ambition, supported by his wife Dorothy. Finally, in April 1996 his dream came true when his independent radio station, Voice of the Handicapped, made its first broadcast.

Voice of the Handicapped - or VOH 96.2 as it is better known - now broadcasts a popular mix of discussions, investigations, news and music to a disabled and non-disabled audience in Freetown and surrounding areas. It has built up a strong reputation for its political independence and its commitment to changing attitudes about disabled people. 'I want disabled people to be recognised in society, and to educate people to view disabled people as equal citizens', says Cullen.

In its regular programmes, such as In Touch and Undercover Solution, VOH investigates issues of concern to its listeners. Recent topics include corruption, spiralling inflation, looting and the trade blockade. Cullen explains: 'We have had a reputation for criticising the government. And VOH has a very large audience now because people respect its boldness.' This has lead to clashes with the authorities. Cullen has even spent a short period in police detention. But he is undeterred. 'I want to create awareness and to sensitise people and that includes the government.'

Radio waves

Radio can be a good way to raise awareness by and for disabled people.

South Africa

In the Xhosa language, 'xhasanani' means 'support each other'. The Xhasanani Communication Club for the Disabled is a voluntary organisation based in Khayelitsha, a poor area of Cape Town. In 1996 Xhasanani decided they needed their own slot on Radio Zibonele, a local community radio station. They wanted to produce programmes in Xhosa about the issues that affect their lives. They felt that only disabled people could explain the realities of being disabled, or understand how people with disabilities coped with everyday life.

Community radio can help to express the interests, needs and ideas of people denied a voice, such as people with disabilities. In order to learn the necessary skills. Xhasanani approached the radio unit of the National Progressive Primary Healthcare Network Media Training Centre. The centre ran basic radio skills workshop training sessions for four Xhasanani members - Harold Manciya, Nosisa Mani, c and Sivabonsja Mbilani.

VOH is on-air 24 hours a day. Its schedule includes programmes in Krio, the local language, and in English. Popular BBC programmes such as Focus on Africa are also aired. 'Many disabled people cannot read so radio is a good way to reach them', says Cullen.

When the military junta seized power in 1997 the unstable political and economic situation in Sierra Leone posed problems for the station. 'We can't broadcast continuously because electricity is too expensive and vital electronic equipment can't get through the blockade'. Despite opposition and uncertainty, James Cullen is determined that VOH will continue. He has written a new jingle for the station: 'The throat is a moral defensive weapon to police all unhealthy acts in our society'. Long may VOH be heard in Sierra Leone.

Sierra Leone

Credit: Worlds of Difference, Facts, Information and Comment about Disability in Africa, Special Supplement with BBC Focus on Africa Magazine, BBC World Service Education, London.

CBR News No. 27 January-April 1998

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The Southern Africa Federation of the Disabled (SAFOD) is a regional network of independent non-government organisations (NGOs) of disabled people. It is the umbrella organisation for the national organisations and federations of disabled persons from Angola, Botswana, Lesotho, Malawi, Mozambique, Namibia, South Africa, Swaziland, Zambia and Zimbabwe. SAFOD is the Southern African arm of Disabled People's International, the international organisation of disabled people.

SAFOD's main aim is to support and encourage new disabled people's organisations (DPOs) in Southern Africa and to strengthen existing organisations. It achieves this by: • providing training to leaders and

staff of DPOs • coordinating development efforts

and self-help projects among DPOs • facilitating exchange of

information • promoting and supporting national

government policies and programmes in favour of disabled people

• monitoring and promoting human rights of disabled people

• advising, consulting and cooperating with member organisations and regional and international bodies.

Raising awareness is vital in supporting these aims. SAFOD is involved in public awareness, education and public relations. SAFOD supports activities such as conferences, assemblies, seminars, workshops, public education programmes, exchange programmes, and publications.

The Conscientisation and Public Education Programme (COPE) is one of SAFOD's five programmes. It aims to conscientise (raise awareness of) leaders and activists in the disability movement about the ways disabled people are marginalised and to educate the public on the problems of disabled people. The second phase of COPE aims to translate this raised consciousness into practical skills. This will enable disabled people to assert their rights and take control of their own lives.

Disability Front Line One of SAFOD's most important information and awareness-raising tools is Disability Front Line, a quarterly newsletter in English and Portuguese. Disability Front Line reports on matters of interest to disabled people in Southern Africa, and the activities of SAFOD and its member organisations. Disability Front Line also acts as a forum to support international discussion about human rights of disabled people.

With a current circulation of 1,000, the newsletter reaches an international audience. The readership includes governments, NGOs and institutions working in disability, community-based rehabilitation, development, women's and children issues, human rights and health care. Disability Front Line has the support of national and international trusts, foundations and donor agencies.

Siegfried K Runge is the Information Officer of SAFOD and editor of 'Disability^ Front Line'. SAFOD also prints and distributes 'CBR News' international edition. SAFOD, PO Box 2247, Bulawayo, Zimbabwe. Fax: +263 974398. E-mail: safod@telconet.co.za

Uganda leads the way

The National Union of Disabled Persons of Uganda (NUDIPU) is the umbrella organisation for all organisations of disabled people in Uganda. Its message of siasa pokopoko (disability propaganda) has reached all areas of Uganda.

Uganda's new constitution, which came into force in 1995, offers disabled people seats in national and local government. Recent village and parish council elections saw 40,000 disabled people elected. In July 1996, Alex Ndeezi was elected as the first deaf Member of Parliament in Africa, taking one of five parliamentary seats reserved for disabled people.

As Chairman of Ugandan National Association of the Deaf and Deputy Executive Director of NUDIPU, Ndeezi has been a vigorous campaigner for the rights of deaf people. He communicates through a Sign Language interpreter and has attracted the media's attention as a leading defender of sexual equality and marginalised groups. He says that deaf people, and people with disabilities in general, are the poorest of the poor and should be supported in obtaining the same educational opportunities as the non-disabled population.

Credit: 'Worlds of Difference'.

Regional awareness

Regional networking is vital. Siegfried K Runge describes SAFOD's work in Southern Africa.

Disability Front Line, in English and Portuguese, is available to disabled people in Southern Africa from SAFOD (address above).

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The Center for Disability and Development (CDD) in Bangladesh is a national non-government organisation for training and materials development. It does not work directly with disabled people and organisations. CDD develops community awareness material about disability to use with community development organisations such as savings groups, non-formal schools and women's groups. Topics covered include early detection of disability, childhood development and the rights of disabled people. Materials developed include posters, comic books, and flash card sets.

Flashcard sets are a series of 8 or 10 picture cards which group leaders can use to either generate discussion (for example on rights to employment) or to teach specific information (such as management of fever). On the back of each card is the 'prompt' or question asked by the group leader together with the correct answers.

CDD has developed flashcard sets on prevention of disability in pregnancy, fever management, prevention of deafness from infection, disability prevention after burns, epilepsy, mental handicap, stroke and general issues such as rights of disabled girls, and employment. These have also been adapted in a comic book style and as posters for distribution to community development organisations. CDD is

A flashcard on prevention of disability after burns, developed by CDD. Key messages are written on the back of the card.

piloting a flashcard set about inclusive education aimed at children.

It is easy to say 'let's make some awareness materials'. In practice, it takes a long time, and a great deal of patience to make even simple materials. At CDD we first develop our core messages and then test that they are culturally appropriate and relevant. Next we write a session plan for group leaders in English, then translate it into Bangla, and then translate it back into English. The next step is to develop materials, such as flip charts, posters and stories, using artists, computer graphics and printers. This takes up to three months. Finally, CDD holds a training course for group leaders to teach them how to use the materials. We use these sessions to evaluate materials and make changes where necessary.

Using materials Once materials ha\e been produced, using them in the community can be a real challenge. A common situation is where a parent brings their disabled child to a community meeting. Usually they want direct help, often a cure for the disability. This is how CDD recommends that group leaders deal with this type of situation.

Welcome the parent and child and explain the topic. Tell them that after you finish you will talk with them separately and discuss their child. Try to cover all the material as planned.

Tips from CDD

DO: • ask disabled people or family

members to give information and speak for themselves

• show disabled people as giving or contributing, not just receiving

• show disabled people in regular community places like gardens or markets, not hospitals

• show disabled women and girls as well as men and boys

• include all information about the picture on the back of the flash card to remind the group leader of the correct information

• plan the time you think it will take to develop the material and then double it!

• always pilot test the material with people from the target group

• always develop awareness materials with an agreed budget and resource people like artists -poor quality artwork and printing can give a negative impression.

DO NOT: • show only disabled people -

always show an integrated situation

• use 'tragic stories' or sensational words or images

• make disabled people 'heroes' so that they do not seem real

• show pictures of 'what not to do' - people remember the picture, not the information. If you must show negative pictures place a large red X over the picture and test it to make sure people understand.

If the child has the same disability that you plan to talk about, ask the parent or child to tell their story. If possible, rearrange the meeting format to include them. For example, you could say that you will show people how to test if the child has hearing problems. However, remember that the meeting is not an assessment situation. After the meeting talk separately with the parent and arrange appropriate follow-up.

Center for Disability and Development (CDD), House D-55, TulbagSavar, Dhaka District, Bangladesh.

Developing materialsCDD in Bangladesh discusses the challenges of developing community awareness materials.

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Every year between 300 and 500 children with hydrocephalus and spina bifida are brought to teaching hospitals in Kampala and Nairobi. Most either arrive too late for effective treatment or their parents cannot afford the treatment available. Some of these problems could be avoided, if local health workers could provide correct information on early treatment and how it could be obtained.

The International Federation for Hydrocephalus and Spina Bifida has started a pilot project for early detection, treatment and rehabilitation of children with these conditions in partnership with Comprehensive Community-Based Rehabilitation in Tanzania (CCBRT).

The first step was to increase the knowledge of health workers. A simple illustrated leaflet was produced with the message: 'Open back or big head: bring the children to CCBRT as soon as possible' (see illustration). Five thousand copies of the leaflet were distributed to hospitals and health centres throughout Tanzania and through CBR workers in Dar es Salaam.

The leaflet campaign ran together with a weekly radio message on three radio stations. The message was repeated at least 100 times over five months in 1997. The message was 30 seconds in length and in Kiswahili, Tanzania's national language. The message ran:

'We have good news for children who are born with an open back and for children with a big head. CCBRT can now provide them with free surgery, at TMJ hospital, every Saturday. Parents or health workers who know of a child with an open back (spina bifida) or with a big head (hydrocephalus) are kindly asked to bring these children to TMJ hospital, every Saturday morning at eight o 'clock. CCBRT provides treatment free of charge. Telephone: 0811-325339 for further details.'

In our experience information must be: • in simple and non-technical

language - so people can understand and are encouraged to take action - to the point - covering the main

• points briefly, but accurately. As a result of the campaign, many children have been referred to CCBRT.

Over 50 children have had an operation and the intensive follow-up needed. More children could be treated if funds were available and if existing services were more widely accessible. If funding becomes available, similar programmes will be established in three other regions in East Africa. Warning: An operation is often not possible when a child's head is so enlarged that the neck cannot support the head's weight and the child cannot sit without help. The CBR project supports these families with home-based care such as aids for sitting. Do not start awareness campaigns before there are skilled staff, specialised equipment and a good CBR programme. Pierre Mertens is the President of the International Federation For Hydrocephalus and Spina Bifida (if). 'Promoting the development of infants and young children with Hydrocephalus and Spina Bifida: a guide for Mid-Level Rehabilitation Workers' (ref'WHO/RHB/ 96.5) is available from WHO Rehabilitation Unit, 20 Avenue Appia, 1211 Geneva 27, Switzerland: or International Federation For Hydrocephalus and Spina Bifida (if), 13D Chemin du Levant, F-01210 Ferney-Voltaire, France. Fax +33 4 50 40 01 19; e-mail: ifhsb@wanadoo.fr Updated information can be found at Internet http://www. asbah.demon, co. uk/ ifhsb/html.

Hydrocephalus (water in the head) and spina bifida (open back) are serious childhood disabilities. Four out of five children with spina bifida are likely to develop a big head. However, hydrocephalus can occur separately, following premature birth, brain-bleeding, meningitis and accidents. The risk is lessened if folic acid is added to the pregnant woman's diet. There is no cure for either condition but early treatment can save life and support a good quality of life.

Spina bifida is treated by closing the back by surgery. Hydrocephalus is treated by inserting a by-pass system (shunt) to remove the water in the head and avoid the head growing larger. Not operating can lead to further disabilities such as vision loss, cerebral palsy and learning difficulties.

Hydrocephalus (big head)

Spina bifida (open back)

A timely message

Pierre Mertens describes an awareness campaign aimed at health workers and parents.

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Choosing and using words well

You will need: • a flip chart or blackboard • pens or pencils or chalk • sticking tape or gum • three faces made from paper or

cloth. If these materials are not available, you can adapt the exercise to suit local conditions (for example, writing names and drawing faces on the ground).

1. As a group, brainstorm all the names or terms participants know, or have heard used to describe disabled children or adults. As participants call them out, write them on a sheet of paper (or blackboard). Include all the words mentioned, whether positive or negative.

2. Cut up (or write up) the names into individual pieces of paper and distribute them between participants at random. Ask participants to look at the word they are holding and think how it would make them feel to be called such a name.

3. Stick three faces up on the wall, one happy, one neutral and one sad, spaced widely apart but level. Place the words as follows:

Happy face If the name gives the participants a warm feeling, of self-respect and dignity, then they should place the name under the happy face.

Neutral face If the name feels neutral, neither friendly or unfriendly, arousing no particular feeling, the participants should place the name under the neutral face.

Unhappy face If the name makes the participants feel rejected, unloved, undignified or ashamed, they should place it under the unhappy face.

4. When all the names are on the board, ask participants if they agree with all the positions. If there are names whose position they disagree with, they can come and move them, explaining why.

5. When agreement has been reached about words that everyone feels happy to use, discuss what should be done with the rejected words. For example, they could be thrown in the bin, or torn up by participants.

The development of confidence and self-esteem is a basic human need and the language we use with a child can contribute to or hinder his or her development. This is especially true for disabled children. The words we use, and the way we speak them, reinforce the child's idea or image of himself or herself. They can make a child feel accepted or rejected, loved or unloved, valued or pitied.

The use of appropriate positive language is one contribution towards addressing the needs of disabled children because it is:

• effective • possible for everyone • costs nothing but thought

and effort. All children, including children with disabilities, need to learn to value themselves if they are to develop into confident adults.

Notes to facilitators There is no absolute right or wrong language. Labels last a long time. We should always be aware of the possible effect of the labels we give to disabled children. We cannot always tell what effect language may have on someone. Encourage participants to listen to each other's opinions and feelings. If the group contains disabled people, or parents of disabled children, it is important to listen to the language they choose to use. Disabled people have names -use them.

From: 'Addressing attitudes to disability: a collection of resource materials', a draft resource pack by Hazel Jones, Save the Children Fund UK, 1998. Further details of the pack will be given in later issues of CBR News.

This group exercise aims to make participants more aware of the language used about disabled children or adults.

11

NOTHING ABOUT USWITHOUT US Nothing About

Us Without Us

by David Werner

Review by Jonathan Flower, Steve Harknett and Jane Tompsett.

David Werner's books Where there is no Doctor and Disabled Village Children will be familiar to most people working in disability rehabilitation in developing countries. Nothing About Us Without Us is just as user-friendly and as easy-to-understand as the earlier books and is destined to become an essential source to the CBR worker.

Nothing About Us Without Us is about using local resources and technologies to find solutions to the "problems faced by disabled people. The book does not give ready-made solutions for CBR workers to replicate their own communities. Instead, it lows how communities can develop their own solutions through a process of creative thinking. In this 'co-operative process of discovery' there are several key actors - service providers, technicians, local craftspeople and, above all, disabled people themselves.

The main message of the book is that e participation of disabled people in rehabilitation is of absolute importance, their participation in a CBR project is not a token gesture or an optional extra, disabled people are not just beneficiaries but 'leaders in the problem-solving process'. The true stories in Nothing About Us Without Us describe the many ways in which disabled people have used their skills to help themselves and other disabled people. These include: • Conchita: a paraplegic woman who became a technician at Project PROJIMO and an advocate for women's rights. • Marcelo: whose legs were weak from polio but who had very strong arms. He was the only person who was brave and able enough to climb up a lamp post to change a street light when it had burned out.

• Quique, a quadriplegic, who taught Spanish in the language teaching programme to generate income for PROJIMO. To explain how communities can find solutions to disabled people's problems, the book contains dozens of stories of how disabled people have worked with professionals and craftspeople to devise appropriate appliances and techniques. Many of the stories come from the now famous Project PROJIMO in Mexico, but there are also examples from Brazil, India, Bangladesh and other countries. The stories are illustrated with hundreds of photos and drawings which have become Werner's trademark. The stories and illustrations lend human interest to the author's message. Surprising solutions Some of the appropriate technologies developed include: a low-cost device for measuring pressure to prevent pressure sores, made from plastic tubes and balloons, developed by Project PROJIMO culturally adapted artificial limbs, such as the Jaipur foot and the Mukti limb (made out of plastic pipe) seating and standing aids made out of paper (paper-based technology). Werner says: 'Some of the best things that take place in a community-based programme, as in life, are completely unplanned." There are remarkable stories of surprising solutions to problems. Manolo was a 14-year-old boy with mental handicap who was withdrawn and uncooperative at home. Jorge was a boy of the same age who used a wheelchair. An unlikely friendship grew between the two boys. Manolo started to talk and to work at Project PROJIMO as an attendant to the physically disabled people. He gained so much self-respect and confidence that his mother, when she came to visit,

failed to recognise him. Nothing About Us Without Us is all

about communities, and in particular disabled people, helping themselves. The book shows the enormous potential which exists in communities. It challenges the reader to look again at his or her community and the resources within it which can be used to help disabled people. Some of the questions the reader will be challenged to ask and find answers to are: • How can we make the equipment we need? • What materials are available locally and how can we use them? • What local craftspersons can lend support? • How can disabled people be partners in the rehabilitation process? One limitation of the book is that most of the examples deal with physical disability. However the principles of creative problem-solving can be applied to help people with other impairments. Werner encourages readers to contribute to the next book to widen its coverage.

Nothing About Us Without Us is an honest book and is not afraid to reveal the problems and difficulties faced in a CBR project. However, it is also a wonderfully optimistic and inspiring book. Why not save up and invest in a copy of this valuable book?

Jonathan Flower, Steve Harknett and Jane Tomsett, Department of Community Disability Studies, Centre for International Child Health, 30 Guilford Street, London WC1N 1EH, UK. For details of how to obtain the book, see page 12.

12

Nothing About Us Without Us: Developing Innovative Technologies For, By and With Disabled Persons By David Werner, Healthwrights, Palo Alto, USA, 1998. ISBN 0 9655585-3-3 For review and description of contents see page 1 I. Available from: Teaching-aids At Low Cost (TALC), PO Box 49, StAlbans, Herts, AL1 5TX, UK. Fax: +44 1727 846852 E-mail: talcuk@btinternet.com Price: £7 plus p&p (£2.75 surface mail or £3.75 air mail). or: Healthwrights, PO Box 1344, Palo Alto, CA 94302, USA. Fax: +1 650 325 1080 E-mail: healthwrights®igc.org Price: US$7 (very poor countries): US$10 (fairly poor countries): US$15 (rich countries) plus p&p US$5 per book surface mail. Prices are for single copies. Discounts are available on the purchase of jive copies or more. Air mail postage is extra (for details of discounts and air mail p&p apply to Healthwrights).

Working Together with the Media: A Practical Guide for People with Disabilities By Barbara Kolucki, 1LO and Rehabili-tation International, Geneva, 1994. ISBN 92-2-109058-2 A clearly written practical guide, containing stories, exercises and illustrations. It looks at aspects as varied as the importance of role models, building awareness into education programmes, using humour to get a point across, and making the environment more accessible to people with disabilities. Most of the case studies are from Africa but can be easily adapted to other regions. Available from: Vocational Rehabilitation Branch, Training Department, International Labour Organization (ILO), 4 Route des Mori/Ions, CH-1211 Geneva 22, Switzerland. Fax: +41 22 798 8685 or: Rehabilitation International, 25 East 21 si Street, New York 10010, USA. Fax: +1 212 505 0871. Single copies free to disabled people's organisations in developing countries.

Who and what we are: Media Information (Resource Kit I) and Campaigns (Resource Kit 3) By Agnes Fletcher, Disability Awarene in Action, London, 1992/3.

The media kit looks at how people with disabilities can use the media to raise important issues. It has sections on images, alternative media (such as braille, large print and audio-cassette), the press, radio and television. The campaigns kit looks at different types of campaigns and the steps to consider when campaigning, including fundraising and budgeting. Both packs are well organised, are illustrated with cartoons and contain case studies. Available from: Disability Awareness in Action, 11 Belgrave Road, London, SW1V 1RB, UK. Fax: +44 171 821 9539 E-mail: 100726.136 @ CompuServe, com Price: Single copies free to disabled individuals in developing countries.

VIDEOS International catalogue of selected videos and films concerning children with disabilities By Barbara Kolucki, Rehabilitation International and UNICEF, New York, 1998. Lists 150 recommended films and videos (mainly in English) on children and disability, focusing on videos which have proven effective in training. The list is part of a larger film and video catalogue project. Available from: Rehabilitation International, (address in first column) Price: $US5 to cover p&p.

MAGAZINE Worlds of Difference: Facts, Information and Comment About Disability in Africa: A Special Supplement with Focus on Africa Magazine, BBC World Service Education, London, 1998. Designed to accompany the World Service radio slots (see page 2), this lively 16-page magazine contains facts, figures and stories of disabled people in Africa. It has colour photos and a list of useful addresses. Available from: Healthlink Worldwide. Price: free to developing country readers.

Our apologies to the following organisations who assisted with funding for CBR News 26 The iegacv of leprosy but were inadvertently omitted from the l i s t of flinders: Aide aux Lepreux Emmaus-Suisse (ALES), Association Franchise Raoul Follereau, Deutsches Aussatzigen-Hilfswerk (DAHW), Uamien Foundation Belgium, Fondation Luxembourgeoise Raoul Follereau, Sasakawa Memorial Health Foundation, States of Jersey Overseas Aid Committee.

CBR News is the international newsletter on community-based rehabilitation and the concerns of disabled people. The international English edition is published three times a year by Healthlink Worldwide and distributed by the Southern African Federation of the Disabled (SAFOD) in Zimbabwe. An electronic text edition is available in some developing countries via SatelLife's computer network, HealthNet.. Contact: hnet@usa.healthnet.org Together with four regional editions and Braille and audio-cassette editions, CBR News has a worldwide circulation of 20,700. Publishing partners Audio-cassette: Action on Disability and Development (ADD), UK; Bangla: Social Assistance and Rehabiliation for the Physically Vulnerable (SARPV), Bangladesh; English for India and Hindi: Amar Jyoti, India; French: Mauritium, Mauritius; English braille and Indian language cassette: Blind People's Association of India Programme Coordinator Heather Payne Editor Kaye Stearman Design and production Celia Till Editorial Advisory Group Beverley Ashton (UK), Arlette Bazire (Mauritius), Barbara Bubb (UK), Peter Coleridge (UK), Rachel Hurst (UK), Khalfan H Khalfan Zanzibar), Joseph Kisanji (Tanzania), Laura Krefting (Canada), Ray Lang (UK), Joshua Malinga (Zimbabwe), Alexander Phiri (Zimbabwe), Dr Enrico Pupulin (WHO), Bob Ransom (ILO), Lena Saleh (UNESCO) Dr Ala'a Shukrallah (Egypt), Sue Stubbs(UK), Gabor Tiroler (Sweden), DrUma Tuli (India), B Venkatesh (India), Kennett Westmacott (UK), Leonard Williams (Solomon Islands), Pam Zinkin (UK) .CBR News is supported by Bread for the World, CAFOD, Caritas Netherlands, Charity Projects, Christian Aid, Christoffel Blindenmission, Norwegian International Disability Alliance, NOVIB, Radda Barnen, Save the Children Fund (UK), Stichting Kinderpostzegals Netherland. Reproducing articles Healthlink Worldwide encourages the reproduction of articles for non-profit uses. Please clearly credit CBR News/Healthlink Worldwide as the source and send us a copy of the reprinted article. ISSN 0963-5556 Printed by Victory Printers, Bulowayo 74619, Zimbabwe Subscription details To receive CBR News, please write with details about your work to: Healthlink Worldwide (formerly AHRTAG), Farringdon Point 29-35 Farringdon Road London EC1M3JB, UK. Telephone +44 171 242 0606 Fax+44 171 242 0041 E-mail info@healthlink.org.ukhttp://www.healthlink.org.ukRegistered charity no. 274260 Annual subscription charges Free Readers in developing countries and students from developing countries £6/$ 12 - Other students £12/$24 - Individuals elsewhere £24/$48 - Institutions elsewhere Discount available on bulk orders.

Healthlink Worldwide aims to promote policies and practices in health, which are appropriate, sustainable and cost-effective. Healthlink Worldwide provides information on health and disability issues in developing countries, and provides technical support and training to partner organisations.

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