Source: Djenana Jalovcic, Malcolm Peat, Darko Krznaric, Beth Richan – Queen’s University, International Centre for the Advancement of Community Based Rehabilitation

Extract:

MDGs and Disability: Leaving 600 Million Disabled People Out

Despite of the magnitude of disability,  people with disabilities are not mentioned in any of the eight MDGs. Persons with disabilities are largely invisible, ignored, marginalized and excluded from mainstream society.

Most development agencies and practitioners recognize that the MDGs cannot be achieved without addressing the needs and rights of disabled people. However, the relationship and relevance of disability to the MDGs is not so well defined and recognized.

Many development agencies focus on MDGs, and disability which is not included in MDGs is not a development priority.

There is an urgent need to mainstream disability in MDGs. Disability must be taken into consideration by policy makers and technical experts when programming, implementing, monitoring and evaluating the current and all future MDG programs.

Advocates for mainstreaming disability propose inclusive MDGs:

1. Eradicate Extreme Poverty For People with Disabilities and their Families
2. Achieve Inclusive Education
3. Promote Gender Equality for Women with Disabilities
4. Reduce the Mortality of Children with Disabilities
5. Achieve the Rights of Children and Families
6. Combat HIV/AIDS
7. Ensure Environmental Sustainability
8. Develop a Global Partnership for Development

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The award-winning ‘Talk’ by Disability Rights Commission portrays a society in which non-disabled people are a pitied minority and disabled people lead full and active lives.

The award-winning ‘Talk’ by Disability Rights Commission portrays a society in which non-disabled people are a pitied minority and disabled people lead full and active lives.

By Robin Denselow
Kinshasa, Democratic Republic of Congo

Source: BBC News

They rehearse in a tumbledown zoo, they are disabled and they come from one of the poorest nations on Earth. Congolese band Staff Benda Bilili have overcome more than most to put together an acclaimed tour of the UK.

Ricky Lickabu and his wife, Mafuta, usually makes their money trying to sell cigarettes from a stall outside the market in Kinshasa.

But business is rarely brisk in the Congolese capital and Lickabu sells just $18 (£11) worth of cigarettes a day if he is lucky.

And the challenges he and his wife face are heightened as they are both disabled from polio.

This week, however, Mafuta Lickabu is on her own at the cigarette stall because her husband is in Britain on the first-ever UK tour with his band.

Staff Benda Bilili are being feted as among the most exciting and extraordinary newcomers of the year.

There is nothing new about a story of unexpected success in the music industry, but Staff Benda Bilili are surely unique.

They have overcome hardship and disability to make it from the streets of Kinshasa to the concert halls of Britain, and shown extraordinary ingenuity in the way they create their music.

And they are surely the only band in the world who have rehearsed their music, and then recorded an album, in a zoo.

Sanctuary

Like much of the Democratic Republic of Congo, Kinshasa zoo is gradually recovering from years of hardship. During the chaotic period that marked the end of the Mobutu era, many of the animals here were taken as food by the hungry city population.

Today, there are leopards and monkeys in the cramped cages, and on a patch of grass in the middle of the zoo there are a group of polio-victims sitting playing electric guitars in their wheelchairs.

They have very basic equipment and only small amplifiers, but they sound tremendous, mixing gentle harmony songs about their disability with rousing rumba tunes – the basis of most great Kinshasa music – with other influences from reggae to R&B.

Staff Benda Bilili came here because it was quiet and they had nowhere else to go.

The zoo is a place of relative calm amidst the noise and chaos, amidst the poverty and energy of the third largest city in Africa, and it happens to be close to the disabled centre where they had spent much of their time.

Lickabu first met fellow band-member and polio victim Coco Ngambali when they were both working on the ferry that crosses the vast Congo river between Kinshasa and Brazzaville, a good place for the disabled to do business as Mobutu had decreed that the disabled could travel on the ferry tax-free.

They were both musicians, but formed a band with other polio victims simply because other bands in Kinshasa refused to work with them.

“I knew how to sing and play guitar but other bands wouldn’t work with me,” said Lickabu.

“They said that I turned up late because I was in a wheelchair, and I couldn’t dance.

“So I had to start a band with other handicapped musicians, and it worked out well.”

The owners of the zoo gave them permission to rehearse, and they gradually developed their own style, while managing to keep themselves and their families alive by working as electricians, tailors or street vendors.

Five-star reviews

They started out playing in the streets, trying to target areas where they might be heard by foreigners who had more money than the average city dweller, and might drop the occasional dollar at the feet of the buskers in their wheelchairs.

Amazingly, it paid off.

They came to the attention of the Belgian record producer Vincent Kenis, a specialist in Congolese music, and he helped them to record not in a studio but in the open air, out in the zoo.

The band’s debut album, Tres Tres Fort (Very Very Strong) was recorded by Kenis using microphones connected to his large laptop computer, with power provided by a mains cable connected to a deserted refreshment bar nearby.

The album features the guitarists in the wheelchairs, of course, along with one other remarkable Kinshasa survivor.

Roger Landu is a teenager who used to live on the streets, but spent much of his time hanging around with Staff Benda Bilili. They eventually invited him to join them.

He had no money, but designed his own home-made instrument, which he made from an empty fish can, a piece of wood and one guitar string. Kenis showed him how to amplify the instrument, and he now plays like some DIY Jimi Hendrix.

Staff Benda Bilili are still not fashionable in Kinshasa – few people come to watch them rehearse in the zoo, or at the little club where they play near the airport.

But in Britain it has been a very different story.

Their first British tour has been a triumph, with five-star reviews from national newspapers.

It has been an extraordinary story – and now, hopefully, Staff Benda Bilili will be able to give up their day jobs and become full-time musicians.

Source: The African Union and the European Union partnership

At least one in five of the world’s poorest people are disabled but there is as yet no widespread acceptance or push to ensure that 20% of the poorest recipients of aid programmes are disabled.

Disabled people are so severely excluded from all areas of society that there is very little information or comparative data on the effects of disability on individual, family and community well being and almost no assessment of the economic implications of disability.

But there is a very strong link between disability and poverty which implies that there is not one of the internationally agreed Millennium Development Goal targets that can actually be met without now considering how to include disabled people.

But inclusion, or mainstreaming of disability into development programming is proving to be an enormous challenge. This paper sets out to highlight some of the main reasons why this may be the case and offer some recommendations for how to overcome them.

The Models of Disability: Individual and Social models

Summary

1. Social model of disability
2. Create policy commitments on disability inclusion
3. Collect disaggregated data on the economic and social situation of disabled people
4. Budget for access

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Epilepsy – “The Little Dying” in Swahili – the challenge to make a ‘boring’ subject interesting.

English – October 12, 2009

Published by: Dutch Coalition on Disability and Development (DCDD) – Jeanet de Jong

Karijn Aussems, 32, is director of the NGO Youth on the Move, an organisation in Kenya that works with people with epilepsy. She left The Netherlands and moved to Kenya in 2008 and in the process she has learned that epilepsy is often seen as a boring subject; both for potential sponsors, and for people in the streets.

Karijn Aussems, 32, is director of the NGO Youth on the Move

“We are making it more interesting and we educate people. We start by listening to the personal stories, experience, behaviour and ideas and we use this in education.”

I met Karijn during the summer of 2006. She just received her Bachelor’s Degree in Community Development and was very much focused on moving to Kenya and start activities for Youth on the Move in Nairobi. The framework of the organisation and its aims were put in place, but the challenge of getting sponsorship remained. “Somehow epilepsy seems to be a boring subject, it doesn’t have the ‘sexy’ image like AIDS or empowerment of women. These subjects are given lots of attention and money. People in the Western world talk about these issues. When it comes to epilepsy this is not the case”.

When we met Karijn came across as if she was in a hurry. “I am trying to catch up time”, she says. Karijn knows what it feels like to have epilepsy; she lived with it for 22 years. It restricted her life in many ways. After a successful operation some years ago, she now lives a life without limitations due to epilepsy and is more self confident than ever before. However she clearly remembers the way she was bullied in primary school, the way she was not able to rely on her body and the uncertainty about being ‘different’. It was her personal history that motivated Karijn to start Youth on the Move. The choice to work in Kenya was made when, working as an intern, she found out that in Kenya there is hardly any information available that helps to understand what epilepsy is, what it means and how you can live with it.

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“Much has been accomplished, but the world continues its struggle to create societies in which disabled persons enjoy the same opportunities as other members of the human family, and are viewed and treated as equal partners in the social, cultural, political and economic life of our communities.”

Kofi Annan, Beirut, Lebanon, 3 December 2001.

What is disability?

The definition of disability has shifted over the past two or three decades. It used to be defined purely in medical terms as a health condition. This approach located ‘the problem of disability’ in the person with a disability and ‘the solution’ in treating the person with a disability. Now, disability is more often recognized as the interaction between a person and his or her environment, including the social, economic, legal and built environment. This understanding is endorsed by WHO and used in Australia [1].

A disability advocacy approach

In an effort to promote the social model of disability – an approach that acknowledges three distinct barriers: attitudinal, institutional, and environmental, which marginalise and exclude people with impairments, it is important to understand the difference between disability and impairment. These two terms are often used interchangeably but have distinctly different meanings [2].

Impairment: “Any loss or abnormality of psychological, physiological, or anatomical structure or function”[3]

Disability: Is the outcome of the interaction between a person with an impairment and the attitudinal and the environmental barriers he/she may face [2].

Models of Disability

Medical Model

• Views PwD as having physical problems to be cured
• PwD relegated to the passive role of patient, with medical personnel and care- professionals making many decisions
• Excessive focus on the desirability of fixing the disabled person’s impairment
• PwD become defined solely in terms of their diagnosis, as a patient with medical needs and no longer as a person with a whole range of needs.

Charity Model

• View PwD as victims of impairment and as the beneficiaries of charity, alms, and services
• Services are designed for them and delivered to them, perhaps with the best of intentions, but with insufficient consultation
• Carers may become unacceptably powerful, making decisions about what is best for those in their care.

Social Model

• Identifies three major barriers that confront PwD:
  • Physical (exclusion from the built environment)
  • Institutional (systematic exclusion or neglect in social, legal, educational, religious, and political institutions), and
  • Attitudinal (negative valuations of disabled people by non-disabled people)
• Removing these barriers is possible and has a hugely beneficial impact, both on the lives of disabled people and on the whole community

Source [2]

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