Tag Archives: disability

What’s behind CBM’s ‘End the Cycle’?

 

The End the Cycle team and local film crew collecting stories in Bangladesh using a human-rights based approach.

Have you ever wondered what makes End the Cycle so unique?

Or perhaps you watched one of our short videos and felt there was something different about it?

We frequently receive feedback that End the Cycle videos are insightful, professional and creative, as well as useful in helping people understand how poverty and disability are linked. Our videos help people understand the importance of including everybody.

But the process along the way to create the great result is also worth exploring – in fact, the way we go about End the Cycle’s work is just as important as the finished product. The foundation of all that we do is our principles, based on Article 3 of the UN Convention on the Rights of Persons with Disabilities. The principles inform our plans and guide our decision-making. In this post, we’ll unpack some of the principles and how they are applied in real situations.

Local Ownership:

When a new set of resources is to be developed, a local partner is identified to work on story collection and development. In many cases, this local partner is a Disabled People’s Organisation, or DPO. In some cases, this has been an existing CBM partner who has people with disabilities in positions of leadership. We want the local ownership to be in the hands of people with disabilities. We draw up a contract with the local partner, clearly setting out roles and responsibilities.

We think it is important that a person with a disability from the local partner is in charge of the process. This means that when the film crew is on the ground, it’s the local person who leads the group and has the final say.

Own story, own words:

In the words of Abena, an End the Cycle self-advocate from Ghana:

“Someone wearing the shoe knows very well how tight it is, how painful it is inside. But because you are not wearing the shoe, you can’t talk for me. So it is better you give us a chance to talk for ourselves.”

This principle relates to the central and consistent role of people with disabilities in defining and directing their own goals. Telling their own story in their own words keeps the person in control of how they are represented. This means ensuring participants understand End the Cycle’s plans for the resources and that consent to be a part of the project is genuinely informed. Later, when videos are being edited and creative elements added, drafts are sent back to participants to check they are still happy with how they are being portrayed. At any stage in the process, or even after the videos are finished, participants can intervene to make changes or even withdraw from the project.

Once everyone is happy, the videos are shared through our global networks, getting the self-advocate’s message out into the world.

Accessibility: increasing all the time

All reasonable measures are taken to ensure End the Cycle resources are accessible to all people. We aim to leave no one behind!

This is an area we always consider and our resources have become more accessible over time, as we learn and grow. At present, key accessibility measures include:

  • All videos are sub-titled
  • Latest videos also have international sign captioning on-screen, as well as audio-description alternative versions
  • Our website can be switched between English, French or Spanish, and many videos are also available in these languages, as well as some in Arabic
  • All documents are available in Word and PDF versions
  • The website has been designed with accessibility in mind and meets AA standard

Accountability

We are committed to being accountable to the people who have shared their story with us. For this reason, we have clear Terms of Use so that anyone who downloads an End the Cycle video is aware that the story must not be edited or changed in any way, without us checking with the person in the story. The Terms of Use state clearly that stories must not be retold or modified, and that photos cannot be used without the story, giving the context that the person provided.

 

What do you think of these principles? Could they be applied to all story collection in the international development sector, or is there more we could do to raise the bar on a rights-based approach? We’d love to hear your thoughts.

 

Send an email to contact@endthecycle.info or check the full set of stories here.

International Day of People with Disabilities: Include Us

This post has been written by Elle Spring is an Advocacy and Communications Officer at CBM Australia. Her passion is storytelling for change and she has recently returned from collecting stories of the lived experiences of people with disabilities in Vanuatu.

Globally, one billion people have a disability, and 80 per cent live in developing countries. In developing countries, women comprise three quarters of people with disabilities. Women and girls with disabilities are disproportionately represented and are often the furthest left behind.

To mark International Day of People with Disabilities (IDPD) on 3 December 2017, CBM has created a video to highlight their unique experience, the contributions they have to make, and the importance of including women and girls with disabilities in all development efforts.

 

Meet Nelly from Vanuatu; a leader, an advocate and the National Coordinator of Vanuatu Disability Promotion and Advocacy Association (VDPA) – the national Disabled People’s Organisation.

Nelly, the National Coordinator of Vanuatu Disability Promotion and Advocacy Association (VDPA)

Nelly, the National Coordinator of Vanuatu Disability Promotion and Advocacy Association (VDPA) ©Erin Johnson/CBM Australia

“I’m happy that I am a woman with disabilities and I am a leader…I’m not only advocating for me, but for my members as well.

However, this is not common. “In Vanuatu, you hardly see women with disabilities leading different organisations. It’s really hard because of the barriers they face.”

Women and girls with disabilities face multiple layers of discrimination; creating barriers which stop them from achieving their full potential.

“Women with disabilities face double, and most times triple discrimination, because they are a woman, and they have a disability, and the abuses they face or the discrimination they face in society.”

“When you come out from your house and someone is staring at you, its discrimination already and you feel like you’re not part of the community – that’s what our women and girls with disabilities are facing in the community.”

Women and girls with disabilities are often hidden away by families, excluded from decision-making – even about their own bodies – and are less likely to attend school than girls without disabilities. In developing countries just 32.9 per cent of girls with disabilities complete primary school.

“Most of our women and girls [with disabilities] have not had education, they are left at home.”

Without education, it makes securing formal employment far more difficult, especially when many women and girls with disabilities are unaware of their rights.

“Most women with disabilities, they are volunteers – they do work without any pay and we always advocate for their rights. If this lady did the same work as a woman without disability, you need to pay her the same amount.”

“Women and girls with disabilities should know their rights. They need to know they have the same rights as anyone else. They have to be empowered and live as anyone else.”

The United Nations (UN) theme for International Day of People with Disabilities this year is: Transformation towards sustainable and resilient society for all. It draws attention to the changes that must be made to ensure the 2030 Agenda – which aims to leave no one behind – can be realised. As former Secretary General of the UN, Ban Ki-moon stated:

To be truly transformative, the post-2015 development agenda must prioritise gender equality and women’s empowerment. The world will never realise 100 per cent of its goals if 50 per cent of its people cannot realise their full potential.

Without including women and girls with disabilities in all development efforts, the inclusive world envisioned by the 2030 Agenda cannot be achieved, and women and girls with disabilities will continue to be furthest left behind.

“We need to work towards a society that is inclusive, barrier-free and rights-based for all. Women with disabilities need to become leaders for tomorrow. We are agents of change.”

“If more women with disabilities are taking leadership positions and advocating for the rights of women and girls with disabilities, and all people with disabilities, I believe that we will not leave anyone behind. Include us!”

Global Strategy to End Clubfoot Disability

CBM has been a founding and governing member of the Global Clubfoot Initiative (GCI), an umbrella organisation of non-governmental organisations involved in clubfoot treatment worldwide. Via GCI, CBM has helped develop a standardised training package for clinicians treating children with clubfoot and a global database of cases treated.

Up to 85% of children born with the condition worldwide are unable to access treatment. CBM has thus collaborated with GCI on the drafting of a Global Strategy to End Clubfoot Disability, which is published today, 3 June 2017,on World Clubfoot Day and the birthday of the late Professor Ignacio Ponseti who pioneered the successful treatment technique. This strategy has prioritised countries in which programmes need to be established and developed, as well as estimating the costs involved in doing so. Under this strategy we hope that, by 2030, 70% of children born with clubfeet in low and middle income countries will have access to the treatment they need in order to walk and run free for the rest of their lives. CBM, via our partners worldwide are already a major provider of clubfoot treatment internationally and intend to take a leading role in the implementation of the global clubfoot strategy published today.

What is clubfoot?

Congenital talipes equino-varus, or clubfoot, is the most common significant musculoskeletal congenital abnormality, affecting between 1 and 2 babies in every thousand live births. The deformity presents as a “twisted” foot, with the sole of the foot turned upwards and the ankle twisted inwards. The condition is twice as common in boys as in girls and in two thirds of cases both feet are affected.

Without treatment, the child will begin to try to walk on the deformed foot, which with time will become stiff and painful. Also the bones of the foot will secondarily deform making correction more difficult and often only possible by means of extensive and costly surgical procedures. Without correction mobility is impaired, leading to children having difficulty attending school and being unable to participate in the normal activities of childhood.  Normal shoes cannot be worn and as adults employment opportunities are limited.

Clubfoot deformity is entirely correctable by a very inexpensive and simple technique known as the Ponseti method. This involves a weekly manipulation and plaster casting of the foot, which typically corrects over a period of 5-6 weeks. The majority of cases need a minor surgical procedure.

Globally, nearly 200,000 children are born with clubfoot deformity each year and the majority of these are in low and middle income countries where it is difficult for them to access treatment; of those born today only 15% are likely to be corrected, condemning the remainder to lifelong pain and disability. CBM has been in the vanguard of the drive to establish Ponseti based clubfoot treatment programmes across the less developed world.

Via our partners CBM has gone on to set up Ponseti based clubfoot treatment programmes in many of the less developed countries in which we work and as a result we have transformed the lives of children born with this condition. CBM has also been at the forefront of teaching and training local doctors in the specialized surgical techniques necessary to treat older children and adults who present with “neglected” clubfoot.

Disability, Development and Data – The Triple D in the Arab Region

Hosted by the United Nation’s Economic and Social Commission for Western Asia (UN ESCWA), I had the pleasure to represent CBM at the”Expert Group Meeting on the ESCWA Publication entitled Disability in the Arab Region 2017“. This meeting took place on 11th and 12th of April in Beirut and had the objective of making inputs into a publication on the     situation of persons with disabilities in the Arab Region, a publication UN ESCWA is planning to release on December 3rd this year. More specifically, the publication will be looking at the latest developments regarding the 2030 Agenda for Sustainable Development, its linkages to the Convention on the Rights of Persons with Disabilities (CRPD), as well as at models of social protection in the region.

 

My role was to give a global perspective on the linkages between the 2030 Agenda and the CRPD and to present the work that CBM has been doing in that area over the last years. In addition to sharing a number of concrete text changes to the draft publication, I was very pleased to see that     CBM’s work was already quite well known by many participants: The two pieces of work, the infographic on the linkages between the CRPD and the SDGs as well as our publication on sustainable development were often quoted by speakers, in addition to being   brought to the table by me.

 

One session was devoted to the subject of data and statistics on disability. That session highlighted, once again, that there is still a great deal of confusion about what to measure, what methodology to use etc. At the same time, it also clearly brought forward the willingness to work across different countries of the region, in a view to find a harmonised approach and in order to learn from each other.

 

All in all, it struck me that there was a very high turn-out at the meeting of Governmental representatives. This underscores a good degree of political will to further the rights of persons with disabilities in the Arab Region and CBM was often mentioned as a key actor to help make that happen!