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!”

Fighting Neglected Tropical Diseases: The case for participation and human rights based approaches

This is an excerpt from a blog written by CBM Senior Advisor for Neglected Tropical Diseases (NTDs) – KH Martin Kollmann for the International Coalition for Trachoma Control.

Neglected tropical diseases (NTDs) are causes and consequences of poverty, disability and marginalization. They disproportionately affect the world’s poorest communities and can have profound physical, mental, social and socioeconomic effects on those who lack the resources for prevention, treatment and care. Thus NTD programs can be viewed as an investment in the poorest and most marginalized communities and a critical step towards reaching the 2030 Sustainable Development Goals (SDGs).

Have a look at CBM’s Neglected Tropical Diseases Report 2017.

In order to achieve the SDGs we must ask ourselves how to best minimize the adverse effects of NTDs. What measures do we need to put in place to ensure those affected are not sentenced to poverty, marginalization, discrimination or exclusion?

Hint: Key answers lie in participation and human rights based approaches.

The involvement of communities and people affected is not a new concept in primary health care and disease programs. Many international human rights treaties explicitly state that all people have the right and duty to participate individually and collectively in the planning and implementation of their health care. However, the active participation of people affected by NTDs is not always a reality. Human rights based approaches to NTDs emphasize that any interventions should be based on the principles of participation, non-discrimination and accountability.

Treaties and conventions like the Convention on the Rights of Persons with Disabilities recognize and codify the rights of persons who are disabled, women, children, indigenous peoples and other marginalized groups. People with NTDs often fall into several of these mutually overlapping categories, which is why participatory and human rights based approaches are particularly relevant in the design and implementation of our programs and our advocacy work.

NTDs can cause chronic disability and are highly stigmatizing, which often leads to discrimination, marginalization and exclusion. In many countries, two thirds of persons with disabilities are unemployed and those who have jobs often only work part time. This is particularly true for people who experience advanced trachoma, the world’s leading infectious cause of visual impairment and blindness.

Trachoma, like other disabling NTDs, reduces economic productivity and increases social exclusion, which can cause family breakdowns and abandonment. As a result, many women, who are disproportionately affected by the disease, downplay or conceal visual impairment and pain for fear of exclusion or stigmatization. Similarly, other disabling NTDs can lead to severe stigma, associated mental health problems and social exclusion. These social consequences are often described by the affected as the greater disability.

76 year old Musamba (centre), who is blind from Onchocerciasis (River Blindness), receives Mectizan tablets from our project workers in DRC.

76 year old Musamba (centre), who is blind from Onchocerciasis (River Blindness), receives Mectizan tablets from our project workers in DRC.

Participatory and human rights based approaches, such as Disease Management Disability and Inclusion (DMDI), address these often-neglected aspects of NTD work as a crosscutting theme. They are guided by the principal that people and communities affected by NTDs are essential to the success of programs. Having experienced the disease, disability and associated discrimination, people affected by NTDs have a unique voice and perspective, they bring passion to the work and take the programs closer to the communities they are designed to benefit.

Placing persons affected by NTDs at the center of our program work requires a major paradigm shift, which has profound implications on how services are planned, delivered and evaluated. However, examples from the field have shown that when affected people and communities are given ownership to actively plan, implement and evaluate activities, it leads to better outcomes, improves cost-efficiency and enhances sustainability.

Participation and human rights based approaches are particularly relevant for the last mile of NTD elimination. By enhancing the recognition, systematic inclusion and valued participation of affected people and communities, these approaches assist in creating sustainable, comprehensive and inclusive NTD programs that are fully integrated into national health systems.

In 2015, the international community explicitly recognized the importance of NTDs, calling for their end in SDG 3.3. Moreover, through SDG 3.8 the international community reiterated its commitment to the equality and human rights of all people by including universal health coverage as a key goal – a principal that lies at the core of our NTD work. With over one billion of the world’s people affected by NTDs, it is clear that upholding these human rights will have to happen in a sustained and participatory approach if we are to achieve our goals with no one left behind. The NTD community should be at the forefront of making this a reality.

Data collection and persons with disabilities

The sixth meeting of the Inter-agency and Expert Group on Sustainable Development Goal Indicators (IAEG-SDGs) was held from 11 to 14 November 2017 in Manama, Kingdom of Bahrain. Civil society was able to participate during the plenary session, which was held during the last two days. Key themes that emerged were the need for capacity building, focus on disaggregation of data, and reclassification of indicators and their respective tier rankings. Collecting data on persons with disabilities was a recurrent theme, as well as a focus on data on older persons.

As background, the IAEG-SDGs was established by the Statistical Commission at its 46th session to develop an indicator framework for the monitoring of the Sustainable Development Goals (SDGs) and targets of the 2030 Agenda for sustainable development at the global level and to support its implementation. The global indicator framework was adopted by the UN General Assembly in July 2017. You can read the resolution here.

Alt="Stakeholders with the IAEG-SDGs co-chairs from Mexico and Tanzania"

Stakeholders with the IAEG-SDGs co-chairs from Mexico and Tanzania

This IAEG-SDGs meeting focused on data disaggregation, which is particularly relevant for persons with disabilities who are all too often not counted or included in data collection and consequently left out of key policies and programs. We advocated for disaggregation by disability during the plenary as well as with the co-chairs of the disaggregation work stream (from Germany and Ghana) with members from Bahrain, Brazil, Cameroon, Canada, Egypt, France, the Netherlands, and Senegal.

The disaggregation work stream released its first “stocktaking” document on disaggregation entitled “Overview of standards for data disaggregation” in which disability is highlighted You can read more here. We welcomed the document, and especially that it proposes the Washington Group Short Set of Questions as standard for monitoring the SDGs. As CBM we have supported the use of the Washington Group in Guatemala in the Guatemala National Disability Survey (ENDIS). You can read more about this work here.

Also during the meeting, certain indicators were requested to be reclassified (read here for more information on Tier classification for global SDG indicators). The relevant indicators for persons with disabilities discussed were:

  • health services (indirect), 3.8.1 (will remain Tier III)
  • public city space (direct), 11.7.1 (will remain Tier III, but will be reviewed again in the coming weeks)
  • capacity-building support to developing countries to increase the availability of high-quality, timely and reliable disaggregated data (indirect), 17.18.2 (reclassified as Tier II)
Alt="Working with Stakeholders on our joint statement on data disaggregation"

Working with Stakeholders on our joint statement on data disaggregation

As part of the larger stakeholder group, we had the excellent opportunity to meet with the IAEG-SDGs co-chairs (from Mexico and Tanzania) to propose our recommendations to make the process more inclusive. We proposed to change the format of the plenary so we can input prior to the closed sessions, and also to have more opportunities to engage with the working groups and input into the many processes. Our feedback was received well overall and we hope to see doors opening for civil society to engage more meaningfully in the indicator process.

We will continue to engage in the global indicator process from New York. Stay tuned for more updates on this integral work that is a key part of the implementation of the 2030 Agenda.

The Marathon towards Inclusion

On November 9th and 10th, I attended the third International Conference of the World image1Federation of the Deaf (WFD). Under the motto: “Full Inclusion with Sign Language” over 700 participants gathered in Budapest, Hungary to exchange on key issues for the Deaf Community around the world. Key topics included bilingual education, employment, political participation and technology.

 

This conference was an excellent opportunity to celebrate achievements made by the Deaf Community over the last years, but also to look at the long way that is still ahead towards full inclusion.

An area in which both victories and outstanding struggles can be observed is the recognition of Sign Language in all countries across the globe. While participants highlighted the many breakthroughs that were achieved since the first-ever recognition in the US in the 1960s (today more than 100 Sign Languages are recognised), in many places Sign Language is still not recognised an official language, a language that has the same status as the respective national/spoken languages(s). The recognition of Sign Language is not purely a legal matter! It has massive implications for people’s lives, as it is the precondition for participation on an equal basis with others in basically all areas of life.

 

An area of particular challenge remains employment. The situation obviously varies significantly from one country to another, but the employment rate of people who are Deaf is generally very low compared to the average of the population. There is a multitude of factors leading to that situation     . Some of them are discriminatory practices by employers, their lack of understanding of the Deaf Culture and lack of knowledge of what needs to be put in place in order to provide an inclusive work environment. In addition, the many challenges that people who are Deaf often face in education can lead to   a lower starting point when applying for a job than is the case for hering “competitors”.

During the conference, a number of promising examples on how to improve the employment situation of persons who are Deaf were presented. They revolve around the three compoenents of 1. Raising awareness amongst employers of the rights of employees who are Deaf, 2. Encouraging and training Deaf people to apply for jobs and three. Creating Deaf-led businesses.

 

Whether in employment or other areas of life, the biggest obstacle to full inclusion remains, however, that too often society focuses on the “disability” rather than viewing people who are Deaf just as people! This is certainly true for persons with disabilities more generally. One example that there still is a long way to go strongly resonated with me: How often it happens to people who are Deaf that their Sign Language interpreter is approached by others rather than being approached directly. This is a situation I know – as a blind person – far too well: When I am accompanied by an assistant, questions such as: “Can he walk the stairs?” are often addressed to the assistant. This should be “Can YOU walk the stairs?” This is not a matter of political correctness; it is simply how all of us would like to be treated, namely as full members of society!