Tag Archives: disability

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!

 

Let’s “Shape the future” together

Katharina Pförtner, Global Advisor for Inclusive Education and Regional Advisor for Community Based Rehabilitation, based in Nicaragua writes about her experience while participating in the Inclusion International Conference ‘ Shape the Future’ held in Orlando USA in October 2016.

Partially visually impaired After-School Club Coordinator Chethankumar (2nd from right) leads 'Cheering Up', a highly inclusive exercise that gets the children enthusiastic about engaging with one another.

Partially visually impaired After-School Club Coordinator Chethankumar (2nd from right) leads ‘Cheering Up’, a highly inclusive exercise that gets the children enthusiastic about engaging with one another.

The Inclusion International Conference ‘Shape the future‘s’ main goal was to create a Global Resource to support Self Advocates with intellectual and developmental disabilities (I/DD). Under the headline: “Nothing about us without us” around 900 participants from USA and around the globe came together (I met participants from over 24 countries!)

The discussion in the different workshops and presentations was intense and inclusive, Self-advocates were all around, demanding their rights and easy to understand communication. During the Self-Advocates´Summit 80 men and women with intellectual and developmental disabilities met and elaborated their demands and goals to continue working in the future. The meetings were facilitated by 12 self-advocates from different countries. There was a large group of self-advocates who could not participate (mostly because of high costs for travelling, conference as well as logistics fees) and sent their comments and videos online to the coordinating office.

 
One of the central points appearing all over the discussions was: how can we conclusively translate the rights mentioned in the UNCRPD (like the right to participate in the community, vote, live independently, receive inclusive education etc) to something concrete on the ground? how do make sure that “No one with I/DD is left behind”?

 
To do so, first we have to create the following conditions:

  1. Strengthening self-advocates and their organisations around the world
  2. Challenge negative attitudes wherever they appear
  3. Raise the voices of persons with I/DD and publicise their achievements, demands, experiences, etc. and include them in  the international discussion
  4. Collect Data (disaggregated by gender, age, disability) with  regards to health, education, employment, social inclusion
  5. Analyze the situation in justice systems in different countries and publicize instances of  exclusion from justice for persons with I/DD
  6. Include self-advocates in decision-making units, for example Sara Pickard from Wales (a women with Down Syndrome) is part of the community council in Cardiff.

For this empowerment education plays an important role: Inclusion International plans to create “Catalysts for Inclusive Education”, trying to build alliances with other organizations working in this field and coordinate experts for publications and campaigns in order to oppose the latest negative movements calling for revision of the ideas of inclusive education. In my opinion publishing good practice examples is one of the most important steps for all of us ahead.

 
We should all connect our work on the rights of persons with disabilities, including the persons with I/DD, raise awareness in CBM, partners and alliances, initiate Self-Advocates groups and strengthen them in the different levels of our work. It is important to focus in our activities and discussions on this issue, to make sure that persons with profound I/DD are included in all spheres of life.

 
I would like to share a story which left an impression on me: Ethan Saylor was killed by police officers in a cinema because he did not want to leave; he wanted to watch the movie a second time. He had no ticket. The officers were not able to understand him, he was thrown to the floor and with the three men on his chest, he could not breathe any more. His mother started meetings and campaigning against this injustice which killed her son. She succeeded in initiating a commission where police, justice, self-advocates, parents, politicians discussed much needed changes. This resulted in a training which all police officers will be participating, where self-advocates are included as facilitators.

 
I leave you with some strong statements from participants at the conference:

  • “Normal is boring, who needs to be normal?” “Unboxing” is needed.
  • Independence means different things in different cultures, does not mean to be alone, but to have control about one´s life.
  • Make sure that people matter and their voices are heard. Self-advocacy starts at birth.
  • Legal capacity is not about mental capacity; it is about power over ones decisions, preferences and will.