The urgent need for inclusive civil society programmes
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Sightsavers Social Inclusion advisor Tracy Vaughan Gough is presenting at Council on Foundations Annual conference with the aim of encouraging philanthropic organisations and individuals to ensure people with disabilities aren't overlooked
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The urgent need for inclusive civil society programmes
- 2. #COFAnnual #Philanthropy Disability & Development The urgent need for inclusive civil-society programmes Tracy Vaughan Gough
- 3. #COFAnnual #Philanthropy …working with partners in developing countries to eliminate avoidable blindness and promote equality of opportunity for disabled people 285m people are visually impaired 90% of the world’s visually impaired live in the developing world 37countries Blind 39m Low Vision 246m 80% visual impairment is preventable Cataracts, glaucoma, river blindness, trachoma etc.
- 4. #COFAnnual #Philanthropy “[People] said that she was the result of her parents’ sins. People called her deaf and mute and they neglected her.” 15% of the world’s population have some form of disability Two-thirdsof people who are blind are women 80% of people with disabilities live in developing countries “Society doesn’t accept me. I’m neglected by everyone. No one wants to mix with me. People don’t behave well towards me. They use slang and scold me for mistakes I haven’t made. … they call me a symbol of misfortune …” “They think I am not effective, I am not useful for them, I am a burden, I have no income, I cannot help…so we cannot give him respect” Leave no one behind PARTICIPATION, COLLABORATION,RESEARCH ADVOCACY , PROGRAMMING
- 5. #COFAnnual #Philanthropy human rights MARGINALISED PEOPLE ALL PEOPLE PEOPLE WITH DISABILITIES Individual/group empowerment Inclusive legislation and policies implemented Respect and absence of stigma and discrimination Equitable opportunities, access to services
- 7. #COFAnnual #Philanthropy ‘I wish to become a government employee and definitely one day I will and support … other blind children…’ (inclusive) education Voice and Advocacy Livelihoods “Now I earn myself. Before, people thought I was unproductive, they pitied me, but now I stand on my own legs. My family think I am one of them and can do what they do.” “We have learned to work well together and have achieved far more than we could on our own,” ‘Nothing about us without us’
- 8. Do we have the FACTS and KNOWLEDGE? LAST THOUGHTS: WHAT CAN WE DO? Do we PRACTICE inclusivity? Do we have INSTITUTIONAL COMMITMENT? policies * strategies * buy-in * skills * champions employment (culture) * accessible space*technology * information Do we SPEAK & LISTEN to people with disabilities? networks & experts * participatory planning *accountability mainstreaming * targeted interventions Do we PROGRAMME FOR DISABILITY? Do we INFLUENCE? post-2015 * decision-makers data * research
- 9. #COFAnnual #Philanthropy Thank you. and over to you…. @SIGHTSAVERS #InclusiveCommitment
Notes de l'éditeur
- Slide One: Council on Foundations Title Page Leading Together Hope and Opportunity in a Destabilized World
- My name is Tracy Vaughan Gough I am here today representing Sightsavers, a UK-based international Non-governmental Organisation. I am responsible for our global work on social inclusion and disability rights. I have to say I am delighted to be here. Aside from the opportunity to meet so many inspiring people, for myself and my colleague, Dr. Imran Khan, we see this as an opportunity to do a little advocacy; to spark some interest; and to plant a seed in your minds that will enable you to maximise the impact of your philanthropic action. Before I go into detail. I will, throughout the session, be explaining the images on the powerpoint screen, for the benefit of those people here whose vision may be limited. My presentation with the text is also accessible and has been posted on the CoF website. The image on the screen now is of a woman called Shamsunnahar. She is wearing a colourful sari, dark glasses and is tending her goat; she holds a white cane. Shamsunnahar is 18 years old and lives in Central Bangladesh. She was a teenager when she lost her sight. Suddenly she was unable to do things she had done before like move around alone and go to school. Through one of our partners’ projects, she received rehabilitation, which means she was provided with a white cane and taught how to do household chores and she was also encouraged to join a local self-help group. The 36 members of her group are all visually impaired. The group is now advocating with the government to ensure all members receive their disability allowances. Yet many men and women in the developing world, when they become disabled, do not receive the support they need to become self-sufficient. If people like Shamsunnahar do not receive quite basic support: a cane, training, some confidence building and the opportunity to collaborate with others, and earn a living, it affects us all because their contribution to society will remain aspirational. So, my session today will address the nexus between disability and development. And my challenge to you is to start thinking about what you as individuals, as representatives of your organisations, and as collaborators with others, can do to ensure that people with disabilities, like Shamsunnahar, are not overlooked. The timing is apt, because at the moment at the United Nations, our governments are negotiating the next development framework: the sustainable development goals (SDGs). These will replace the Millennium development goals (MDGs), adopted in the year 2000 and will dictate to a large extent the development issues that will be prioritised by national governments for the next 15 years – in stark terms that means development funding will also be determined by these goals. Sightsavers and other disability-focused organisations in civil society are advocating that disability features prominently. I would ask you, as influencers and development actors to also think about how to ensure that people with disabilities are not forgotten in your programmes - in your operations. So that as we move together in this global village of ours – that No one is left behind. I’ll start with a brief introduction to Sightsavers and what we are about I’ll then share with you the size of the problem of disability. And we will reflect on the voices of people with disabilities living in a developing country. People whose voices are rarely heard by decision-makers. People who are often invisible. These perspectives are drawn from a research project in Bangladesh, entitled Voices of the Marginalised. Our aim is to come to a shared understanding of what can we do together to address disability within all of our work and lives as well as, hopefully, make some commitments to that end. BEFORE I START I’D LIKE THREE VOLUNTEERS WHO CAN READ THE SCREEN – AT SOME POINT I WILL INVITE YOU TO READ SOMETHING OUT. [ take names]
- So who are Sightsavers? We are a 65 year old international NGO based in the UK and we also have a presence in the US. Our mission is two-fold. We work to prevent avoidable blindness and promote the equal participation of people with disabilities. [This slide shows the scale of visual impairment worldwide. Of the 285 million who have some form of visual impairment, 39 million of those are blind. Further 80% of blindness is preventable. There is a map on the screen which shows the 37 countries where we work either directly or through partners. Q2 how many of you wear contact lenses or glasses to function? Now I am severely short-sighted. The first thing I do every morning is locate my glasses and I never leave the house, probably couldn’t leave the house, easily without my glasses or contact lenses. But I manage my impairment. I’m lucky – I can see an opthamologist and can afford what I need in order to function. Now if I was poor and living in a place where glasses were not readily available I would be pretty disabled by my condition – which is refractive error. I would find it hard to read signs and notices with small print, numbers on buses. I would have found it extremely difficult to make my way to school independently, if there was a school and if my parents were supportive of girls education. If I made to school, once there I would have been unable to see the board. I may have slipped behind and not been able to achieve what I have with the simple addition of a pair of spectacles. Now some people’s low vision cannot be fixed and some people are affected by diseases which are one of the causes of blindness. In fact, every 15 minutes someone goes blind from trachoma, for example. Now 90% of the world’s visually impaired people live in the developing world – that is a lot of people whose potential is limited by either some treatment, or if their condition was not treatable, to forms of support that will enable them to live with dignity, with independence and with the same rights as everybody else. Our founder, Sir John Wilson was blind and in 1950 when Sightsavers began, we worked on livelihoods and education for people who were blind. And that core business has remained a focus of our work, alongside our work to prevent blindness. We call this work, social inclusion – because it aims to redress the inequalities experienced by people who are visually impaired or who have other disabilities. Next slide
- Now, around 15% of the world’s population, lives with a disability, according to the WHO. And 80% of those live in developing countries. Two-thirds are women. So if you are a women with a disability you face the impact of double discrimination. In fact, in the poorest communities, one household in every 4 has an immediate member with a disability. Now I find those figures quite staggering, don’t you? Now, being disabled more than doubles the chance of never enrolling in school in some countries, often because schools are not designed to be inclusive, teachers lack the relevant skills, or governments and societies do not value education for a child with disabilities. Think about all that potential being wasted. Before I talk about what we do, I want to share with you what some people with disabilities experience as a result of their impairment. I will invite my volunteers to take on the words of some the people we have met through the research in Bangladesh I mentioned earlier. On the screen there are three boxes which contain speech. Q – Can [NAME] volunteer one read the pink box. [The PINK BOX says: “Society doesn’t accept me. I’m neglected by everyone. No one wants to mix with me. People don’t behave well towards me. They use slang and scold me for mistakes I haven’t made. … they call me a symbol of misfortune …” Thankyou. Can [NAME] volunteer two read the blue box. The BLUE BOX says: They think I am not effective, I am not useful for them, I am a burden, I have no income, I cannot help…so we cannot give him respect Thankyou. Now how does that make you feel? Imagine, people just not giving you a chance - not giving you respect - stigmatising you and your family, because you have a disability. And can [NAME] volunteer three read the orange box. The ORANGE BOX says: “[People] said that she was the result of her parents’ sins. People called her deaf and mute and they neglected her.” ] These are the words of one of the people interviewed in our participatory research. It is a story about a girl who at the age of 16 went to fetch wood. There, she was raped by the son of the chairman of the village. Bloodied and in pain she returned home and explained to her sister in law using sign language what happened. Later, she died. The girl’s brother tried, but failed to file a case against the chairman’s son, but the chairman is powerful locally…. Still, today, there has been no justice.” [Q – Invite feedback] Now. We don’t want you to feel sorry for the people whose voices you hear. Because we believe that pity inspires a charitable approach that may respond to the immediate problem but it doesn’t prevent it in the first place. Now, when we ask people with disabilities what is their priority, in addition to a livelihood and an education, addressing these discriminatory attitudes which stigmatize them is their biggest ask. And its probably one of the hardest issues to tackle because it is about behaviour change. And how do we change behaviour? How do we break down these invisible and visible barriers that impede people with disability from participating equally in society? Next slide
- We think that challenging stigma and discrimination is about a higher level outcome whereby ALL people are able to enjoy their human rights. A large part of being able to enjoy those rights is about being empowered either individually or as a group, so that as individuals and together with others we can CLAIM those rights. The route to change is about three things: 1. legislation and policies: being in place and implemented; 2. access to services that develop a person’s capabilities, such as healthcare and education, and 3. challenging the marginalisation of people with disabilities so that we no longer have to be explicit but can talk about just people. So there is a lot to be done. Part of Sightsavers work remains grounded in promoting the rights of women and men, girls and boys with disabilities in the countries in which we work. This entails a lot of explaining and advocacy. Now I could stand here and give you the spiel myself telling you that it’s important because: Disability affects all of us. Because most of us at some point will become disabled and the numbers are increasing due to health challenges and longevity. Because there are clear linkages between poverty and disability. Because failing to support people with disabilities achieve their potential impacts on all our efforts to achieve lasting development results. And so on. Anyway I am not going to stand here and do that. Next slide
- Instead I am now going to show you a short video animation which I think does it much better. Play video This was a campaign we ran in the UK which successfully resulted in the British government’s international department of development (DFID) developing a disability framework. This effectively means that within the aid arm of the UK government they are putting measures in place to include people with disabilities in their international aid programming. The version I showed you is accessible to people who are deaf in that the pictures speak for themselves and text is included. This version also has a voice over to convey the message to people who are visually impaired. There is also a version available on ‘youtube’ which describes the film in audio. Accessibility of informational materials is critical if we expect people with disabilities to be able to participate on an equal footing. And there’s lots that can be done. I’m going to share with you just a few of what we count as success stories.
- On the screen there are three pictures, accompanied by some text. I would like to invite my volunteers to describe the image and to read out the quotes on the screen. These are from people who have been involved in some of the projects Sightsavers supports. QUOTE ONE: INCLUSIVE EDUCATION ‘I wish to become a government employee and definitely one day I will and support … other blind children…’ This is a quote from Hira Kumari who has been totally blind from birth. Hira lives with her grandparents in a small hut in a remote area of India. Housebound, she was identified as part of an inclusive education project designed to integrate children with disabilities in mainstream schools. Hira was assessed and then helped to go to school where she was taught braille. Now, in addition to sharing the cooking and housework at home, Hira has also participated in National level quiz and cultural competitions and she has won several prizes. She is now a role model in her community – and Hira also has talked about how the other blind and low vision children in and around her village are also interested to go to school and how happy it makes her. Now ‘inclusive education’ is a critical element of transforming society. Not only do children with disabilities gain an education which builds their capacities to earn a living and contribute to society. But the presence of children with disabilities in mainstream schools also normalises disability. Other children see children with disabilities just as children and not defined by their impairment, so that leads to a progressive change in society and starts to address the stigma associated with disability. QUOTE TWO: LIVELIHOODS AND ECONOMIC EMPOWERMENT “Now I earn myself. Before, people thought I was unproductive, they pitied me, but now I stand on my own legs. My family think I am one of them and can do what they do.” This is a quote from Sankarlal, also from India, whose sight began to deteriorate in his early teens due to cataracts in both eyes. By 14 he was completely blind, and treatment to fix the problem was unsuccessful. He grew up, married Gomati and had three children and although the family were getting by, Sankarlal was frustrated as few job opportunities were available to him and he relied on the financial support of his wife. He says that his life changed when he joined a group: a disabled people’s organisation (or DPO). DPOs are generally run by, and for, people with disabilities, and their purpose is empowerment of the members. DPOs assist people to learn about their rights, they support them to gain skills and employment, and collectively members are able to advocate for themselves and others with disabilities. For Sankarlal, the DPO helped him with the paperwork required to submit a loan application to start a business, which he has now expanded. From running a mobile shop on a bicycle, he now has a small building by his house and even has a refrigerator to sell cold drinks. Economic independence is one of the most important pathways to achieving empowerment. Being able to earn money and make decisions about how you use that money means you can live independently and make decisions without relying on others. It is a core element of our strategic approach to disability programming. QUOTE THREE: VOICE AND ADVOCACY “We have learned to work well together and have achieved far more than we could on our own.” This quote is from Abdul Motin Molla who is the chairperson of a similar group in the district of Narshingdi, in Bangladesh. Although a number of people in the district had benefited from training which helped to improve their daily living skills and earning abilities, they still felt isolated. So in 2009, with encouragement from our partner, in Bangladesh, the Shilmandi Union Self Help Group was formed. The group has 15 members, all of whom are blind except for one man who has a physical impairment. The partner, ABC delivered training and support to help the group function and work collectively to achieve their goals. In a short space of time, the group made a lot of progress. Each member is now officially registered as disabled and receives the government disability allowance. The group is growing in confidence about what they want to achieve together, and attendance at their meetings is rising. They have ambitious plans such as campaigning for discounted travel on local transport, opening a bank account for the group, and establishing an office of their own. So, a large part of our social inclusion work is supporting blind and disabled peoples’ groups to realise and fight for their rights because we believe that our work is to facilitate that empowerment and that social change will only happen when people with disabilities are empowered to speak and act on their own behalf. ‘Nothing about us without us’ is a famous oft-cited slogan which was adopted by the disability movement in America in the 80s and 90s and remains as relevant today. In that all our work is designed in partnership with people with disabilities. So this is some of what Sightsavers does. We call it ‘social inclusion’. And ‘social inclusion’ means literally that: the inclusion of people in societies and communities. This means not only working to support their equal rights, but also helping society understand and respect those rights. We believe that people with disabilities are only ‘disabled’ by their society and their environment. So, when all hospital buildings have ramps, When schools include all blind and deaf children When employers value and support people with disabilities When women and girls with disabilities are not vulnerable but respected When those basic opportunities are enjoyed by people with disabilities then the impairments, the loss of vision and hearing, the ability to function independently, are less disabling. But how does this happen? This is the struggle. Because the disability movement has already made huge strides. We have international laws: a United Nations Convention: the UN convention on the rights of persons with disability. It is comprehensive and provides a huge amount of guidance and is well worth a read. We have national laws in many countries. And in some countries those national laws are implemented, and some societies are experiencing a difference. But it is slow. There is a lot that needs to happen to truly include people with disabilities. Society must change and society can, if there is enough momentum. This is one of the roles we see for civil society and development actors like philanthropic organisations. It is such a big task that it requires a collaborative and strategic effort that includes global, national and localised advocacy. We can influence development processes- to include people with disabilities systematically – e.g. the United Nations as they plan the next development framework that will shape development over the next 15 years – the sustainable development goals (SDGs). We can lobby our governments to strengthen their funding of disability-inclusive initiatives. But to enhance credibility in external lobbying we also need to demonstrate what we mean – or practice what we preach. I am sure that many organisations here are already doing a lot to include people with disabilities in the workplace, in your programmes or through ensuring that your grantees include people with disabilities in their actions. But if that’s not the case, I want to provoke you to have a think about just a few things that you could do as an individual in your organisations to include people with disabilities either directly programmatically or operationally or in your networks, lobbying and advocacy work. Our vision is a world where people with disabilities are visible in their communities; actively participating in decision-making. A world in which society values all people’s contributions but ultimately it is about people with disabilities being able to influence the path of their own lives. I’m going to give you a few ideas to kick off your thinking and perhaps even to initiate some commitments: Next slide
- 1. Do we SPEAK & LISTEN to people with disabilities One of the reasons people fail to make targeted efforts to include people with disabilities is a) they either make assumptions about whether or not they are included and b) they don’t know how. There are solutions to both those problems. It is too easy to make assumptions about what we think people need and want. I can’t assume that you are getting something out of this presentation. I will have to ask you. Similarly, when we are developing activities we can ASK people with disabilities: what do you want and need to be involved in this activity; how can you achieve your rights? In most countries disabled people’s organisations exist and there are global networks and experts, such as the International Disability Alliance, who can put you in touch. And we can put in place mechanisms that ensure our grantees develop their plans in ways that are inclusive and participatory. 2. Do we PRACTICE inclusivity? We believe that organisational culture benefits from diversity because it’s the reality – we are all different. Heterogeneity challenges us and makes us more creative in solution-finding. But how to create a diverse environment? Well. this includes making your workplaces accessible to people with disabilities - in both the physicality of the offices but also looking at internal culture to ensure staff are engaged and welcoming. It also means looking at the technology we use and ensuring it is possible for people who are visually impaired to use websites, online tools and documents with screen readers. We can also make our external communications media more accessible, such as ensuring fonts are large on websites and printing in braille. 3. Do we have INSTITUTIONAL COMMITMENT? Inclusive practices sometimes require additional funding – especially if it is an add-on – there are various internal processes that are a good starting point to driving such changes – which are essentially organisational changes and follow the same logic. Including developing strategies, policy documents, identifying influential champions. 4. Do we programme for disability? Sightsavers approach is to include disability as a consideration in our programming ( we call this mainstreaming or embedding). For example, we are currently working at improving the inclusivity in our eye health programmes. This means ensuring the spaces are accessible, that staff are equipped with the skills and knowledge, for example. We also work on targeted activities with people with disabilities. This is essential to address the fact that for many people with disabilities, having been excluded from school or other development activities they may require additional support in building their abilities to develop as entrepreneurs or employees. 5. Do we INFUENCE? We must also use the opportunities we have to influence others and act as role models, whether that stage is at the global level or in our communities. 6. Do we have FACTS AND KNOWLEDGE? Partly because of the lack of attention paid to disability, we know very little about the actual figures around disability because there is such a range and the tools and mechanisms to collect that data are still in development and those that exist are not systematically applied. We also know little about what works in terms of transforming the lives of people with disabilities. Little attention has been paid to research this area although slowly that is changing and there is an increasing awareness that in order to influence we need better information. So, these are just a few suggestions of ours. Q. Before we conclude the session, today, I would like to invite you to turn to the person next to you and tell them something about what you are currently doing to include people with disabilities in your work or b) what you intend to do when you get back to the office. Next slide
- The image on the screen is of a group of children in Zanzibar in Tanzania. The children are close to one another, laughing. In the centre there is a ten year old boy, Rajab, who has albinism and was treated in the past for cataracts. In parts of Tanzania you may know that albino children are particularly vulnerable due to a belief that their body parts have magical powers and they are often maimed or killed. Would anyone like to share? Are you going to do anything differently – what commitments can you make? Alternatively I would like to invite you to tweet your comments and commitments @Sightsavers using the hashtag #InclusiveCommitment With that, I would like to thank you all for your attention and your participation. Please come and chat to myself or Dr. Khan, at any time during the remainder of the conference.