Category Archives: Disability Inclusion
Today we are celebrating International Day of Persons with Disabilities. This day, which happens every year on the 3 December, is an opportunity to raise awareness of the importance of including people with disabilities in all areas of society. Each year the United Nations sets a theme, this year it is Inclusion matters: access and empowerment for people of all abilities.
We talk about access a lot, and it is hugely important. People with disabilities need to be able to access all the same services and opportunities as people without – they need to be able to go to school, access health care and earn an income. They may also need access to specific services – such as rehabilitation or assistive devices, such as wheelchairs.
What is meant by empowerment is less obvious. But it is equally, if not more, important. Empowerment is about people being able to have a voice and take control of their own lives and futures. All people, whether they have a disability or not, need to be involved in the decisions that affect their lives.
People with disabilities know best what barriers they face, and they are able to identify what they need to overcome them. If people with disabilities aren’t involved in the development of programmes and policies then the likelihood is that they will continue to be excluded from them. People with disabilities need to be able to participate in decision making at all levels – from community to global decision making, so that they are not passive recipients of aid, but included in their own development.
I recently got back from the Philippines, where I spent some time with members of local Disabled People’s Organisations who were receiving support from CBM and partners. Here I saw how important empowerment is to unlock the potential of people with disabilities and to deliver real change.
Being part of a Disabled Person’s Organisation had transformed many of their lives. Before being involved in these groups, some of them were isolated in their communities, but now they have an increased awareness of their rights and the opportunities available to them and have become key members of their communities.
One group has been counting the number of people with disabilities in their district, with this information they can go to their government and demand that they meet their needs. Someone else told us about how after one of their group was killed by a police officer, they came together and made sure that the police officer was arrested and charged. Others were making sure that schools in their area had the right policies in place – so that children with disabilities were able to receive an education.
By having a voice and being able to take control of their own lives – they have not only been able to change their own lives – but also the lives of others.
In less than a month, the Sustainable Development Goals, which were agreed by world leaders in September, will come into action. They commit countries to eradicating poverty, fighting inequality and reducing the impact of climate change by 2030. Crucially for CBM, and for the one billion people with disabilities globally, this new agenda pledges to ‘Leave no one behind.’
As part of their training in the Philippines, participants learnt about the Sustainable Development Goals and linked them to issues that affect their everyday lives. They now have the information they need to go their government as say ‘you signed up to this, so this is the action you need to take.’
The Sustainable Development Goals are a once in a generation opportunity to create an equal and inclusive society where people with disabilities have the same access to opportunities as those without. If people with disabilities are able to raise their voice and demand their rights – the impact could be truly transformative.
This week to celebrate International day for Persons with Disabilities, we will be sharing ten stories of people with disability from around the world. To read these stories, please click here.
The ability to read and write is hugely powerful. Women who can read have fewer children later in life, and the children they do have are much more likely to survive. Being literate helps people to find jobs, access information and make decisions about their lives.
Today, on International Literacy Day (8th September), we think about the 781 million adults who cannot read, write or count, and about what needs to be done to make sure that they have the opportunities to gain these valuable skills.
While the data is poor, we know that people with disabilities often have lower levels of literacy than people without disabilities. This is hardly surprising when you consider that in developing countries, as many as 9 out of 10 children with disabilities do not go to school.
In the last 15 years there has been a huge global effort to get more children enrolled in primary school. This has led to a drop in the number of children out of school from 100 million in 2000 to 57 million today. While this progress is huge, many children with disabilities have been left behind. In many low and middle income countries, having a disability more than doubles the chance of a child not going to school. In Nepal for example, 85% of children out of school have a disability.
If they do attend school, children living with disabilities are often more likely to drop out and leave school early. They are also less likely to be able to learn – because schools are not correctly equipped, teachers are not trained or because they are discriminated against. Often getting children in to school and making sure they have the opportunity to learn vital skills such as reading and writing involves small changes; in teaching methods, in physical accessibility or even just in attitude.
Illiteracy among adults with disabilities is even more prevalent than among children, because those who are adults today were less likely to attend school that today’s children. To address this, adult literacy programmes need to be inclusive of people with disabilities. More broadly, we need to make sure that information is provided in alternative formats so that those who are unable to read can still access it.
Goal 4 in the new Sustainable Development Goals recognises the importance of inclusive education and promotes learning for all, including lifelong learning. This is a huge step forward and an important opportunity to ensure that people with disabilities have the same chance to become literate as their non-disabled peers. CBM is advocating that in the indicators that measure the new goals school enrolment is broken down by disability. Because only when we have good data about how many children with disabilities are not in school will we really be able to reach them all. We are also advocating for an indicator on the number of trained teachers to teach children with special educational needs; because getting children into school is not enough.
We often talk about the cycle of poverty and disability, the fact that disability causes poverty, and poverty causes disability. Literacy is one way of breaking this cycle – because when people learn to read and write they are more able to participate in society and have the power to change their own lives.
I arrived in Nepal on May 12th, some hours after the massive aftershock that caused more casualties and a number of additional damages to properties and infrastructure.
I could see in the faces of people how their lives were shaken again, and how they didn’t see where and how to ensure the safety of themselves and their families. My first night in Kathmandu was broken by a number of aftershocks that woke me up and made me run outside in search of safety.
Though earthquakes are not new to me, every time it makes me realise how frightening they are, bringing a feeling of helplessness.
Three weeks later, life has become quasi-normal in Kathmandu, with its traffic jams, crowds in the street, shops and restaurants all open. If you don’t travel to affected areas you won’t see that two major earthquakes hit the city only few weeks back. Though people are still talking a lot about them and every day small aftershocks remind all of us that it has happened.
Working with partners – ensuring inclusion
It’s been three weeks of working with partners to provide support to the most affected people, to raise awareness about persons with disabilities and older people and to make sure that all of them are included and have equal access to relief, despite the challenges posed by isolated and remote villages and the upcoming rainy season.
Our partners are doing a great job to save lives and contribute to the effort made to assist people in need through trauma care and rehabilitation, organising medical outreach camps, providing psychosocial support – trying to help people to regain independence and normality in their lives. However, we still hear stories from persons with disabilities and older people not being able to access distribution points and being left behind – unintentionally – by relief stakeholders. It is a hard job to reach out to the most at-risk, as often they are not informed, cannot reach the front of the queue and their voices are not heard.
What would you do?
What would you do to find food if you are an 80 year-old man living more than a three-hour walk far from the main road and next city? You will walk downhill, hoping to access a relief package, and then find out that you have to carry a 30 kg bag back uphill …and that you can’t do it. You will seek support, but all other people are also too busy trying to survive to help you.
What would you do if you are a blind person trying to find out where distributions are happening and how to access them, only to discover that you have to compete to be front of the queue as there are not enough supplies for all? Obviously you’ll be at a disadvantage, and most likely you’ll lose out.
What would you do if you are a deaf person, having been transferred by helicopter to Kathmandu for trauma care and have no clue of what is happening to you as no one can communicate with you?
These are only few stories, but many more like this are reported every day…
It is great that donors and organisations are moving towards inclusive policies and frameworks, but exclusion happens on the field. What would you do if you were that relief worker and have limited aid to distribute? Field workers must be supported to turn inclusive policies into inclusive humanitarian action.
Advocating for inclusion
CBM works with our partner the National Federation of Disabled in Nepal (NFDN), supporting them to identify persons with disability and older people and assess their needs to then mobilise humanitarian stakeholders to respond to them. It is very encouraging as many of these organisations are willing to make the extra effort, but lack knowledge or information to ensure inclusion.
Bhojraj Ghimire, CIL Kathmandu (checked shirt) takes part in the workshop on disability inclusion organised by CBM and the International Federation of Red Cross and Red Crescent Societies (IFRC) in Kathmandu
Early last week I gave a two-hour orientation on disability inclusion to Red Cross staff, and the head of the delegation said:
“The Red Cross movement was created to help the most difficult to reach and the ones who couldn’t care for themselves, and yet in our response we reach only the easy one. We need to make the extra effort to access all those who are living in remote areas, who are facing barriers to access relief and whose rights we should protect.”
Well, this kind of statement and willingness to walk the extra miles is very encouraging as it will support the relief worker to pay attention and develop the mechanisms to help the older man to carry home his 30 Kg of goods, the blind person to find the distribution point and be in front of the queue or the deaf person to access a sign language interpreter to understand what is happening to him and get news from his family.
I will travel back to Europe soon but I’m confident that our partners will continue to raise their voices and to make them heard by all. Change is coming!
Krishna Gautam is a Past-President of the Mid-Western Chapter of ‘National Federation of the Disabled Nepal’ (NFDN) and founder member of ‘Centre for Independent Living’ (CIL) in Kathmandu. Presently, he works with the CIL as the General Secretary. He lives with his wife and two children in Kathmandu.
In this interview with CBM’s Ashok Shah, Krishna Gautam talks about his experience during the earthquake on 25th April and the work CIL plans to do in the aftermath for the rights of people with disabilities.
When did you start CIL? What’s the idea behind starting this organization?
“We started CIL in Kathmandu in 2006. We were a group of ten people with disabilities who believed it’s important to work with rights-based approach in disability sector. Earlier, whatever we did mostly centred around charity based approach… What CIL wants is that the disability movement must be led by people with severe and profound disabilities; and their issues must be addressed and resolved by persons with severe disabilities themselves. That’s the reason we started CIL.”
Where were you during the 25th April earthquake? What did you experience on that fateful day?
“I was in Nepalgunj [a town about 500km west of Kathmandu]… I was invited at a friend’s place for lunch. At the entrance, two persons carried my wheelchair and helped me get inside the house. After lunch, we were just watching TV and talking to each other when the ground began to shake, making such a terrible noise. Before I could make sense of what was happening, the hosts had left the house and reached the garden outside…
The ground continued to shake and I thought I’ll fall off the wheelchair. Later, the hosts came back and helped me get out of the house. The earth was shaking even when we reached outside. It was such a horrifying experience. Luckily, it was a single-storey house…”
When did you return to Kathmandu? How difficult was it to reach the capital after the quake?
“Actually, I was to take a flight back to capital that Saturday evening. But due to the earthquake, all flights were cancelled. Even telephone connections were down. An hour later, I could finally speak to my family in Kathmandu and got to know that my daughter was slightly injured… Later, I somehow boarded an overnight bus from Nepalgunj to Kathmandu to be with my family. On 26 th April, I could finally meet my wife and children. But a few hours later there was another massive aftershock. I was so worried about my family…”
What are you doing for fellow persons with disabilities who are affected by the earthquake?
“For the first few days, we were so scared that we could not leave our families. The aftershocks kept coming and we couldn’t do anything at all. Meanwhile, we have been calling our Disabled Person’s Organisations (DPOs) in the affected districts to know about the damage caused to persons with disabilities. Also, we have set up some tents in an open ground in Jawalakhel as temporary shelter for people with severe disabilities whose shelters have collapsed and have nowhere to go. At the moment there are about 15 persons in the tents here, most of them wheelchair user and severe spinal conditions. We are expecting some more persons with severe disabilities from worst hit districts like Kavre and Sindhupalchowk. They can stay here up to 3 months, or till the time they have no other alternative… In the coming days, we’re also trying to provide peer counseling and assistive devices in this shelter.”
Tomorrow, you’re going to attend the Protection cluster meeting. How do you plan to advocate for the rights of persons with disabilities?
“I believe, persons with disabilities are the first casualties during the earthquake. They are also most likely to be left behind and forgotten during the immediate rescue and relief work. So, we’re planning to organize as many persons with disabilities and attend the cluster meeting tomorrow. We’ll put forward that access to relief supplies and temporary shelter must be inclusive of persons with disabilities. For that I think we need to organize, make our presence felt in such meetings, only then our voices will be heard. Most importantly, we’re going to advocate that the earthquake will result in many more people with injuries and disabilities who will need to be looked at seriously. The government needs to look into the issues of their recovery and rehabilitation, and later the issue of employment as well.”
Why do you think disability issues needs to be advocated in such cluster meetings? Why is disability forgotten?
I think that’s because we haven’t been able to raise our issues effectively, or mainstream our issues at the national level. The reasons for this could be that we aren’t yet organized among ourselves, we lack coordination and we’re yet to demonstrate our strength and impact as a group and community. We are still inside our houses. Time has come that we leave our houses and fight for our rights.”
As well as providing medical care and emergency support to people with disabilities and injuries in Nepal, CBM is working closely with Nepalese Disabled People’s Organisations to help ensure that all relief and reconstruction efforts are disability-inclusive.
It has now over a year since the Ebola outbreak started in Guinea. CBM supported partners in Guinea and Sierra Leone – 2 of the 3 most affected countries – were forced to scale down their routine activities like community eye care, cataract operations, and community mental health care. The loss of local staff either from Ebola or due to difficulties in travel, and the reduction in clients coming for services has led to a risk of insolvency of institutions, among other negative effects. By extension, tens of thousands of people who depended on them for health, and other social services are no longer getting the services they require resulting in greater disability and deeper poverty.
CBM is working with a grass-roots organisation in Sierra Leone to reduce the vulnerability of people with disabilities and their families to Ebola through awareness raising strategies.
Dr Julian Eaton, Psychiatrist and CBM Mental Health Advisor for West Africa, tells us more about the mental health programme and its role in responding to psychosocial needs of the population in Sierra Leone.
Our activities in Sierra Leone since the Ebola outbreak started
When the Ebola crisis began in March 2014, our programmes in Sierra Leone were affected. Due to the rapid spread of this disease, there were significant travel bans imposed, bans on public gatherings, closure of schools, reduction in the use of hospitals by people etc. Routine cataracts and surgeries came to a standstill and routine programmes started collapsing.
We needed to continue supporting our existing partners as there was no income flowing in due to lack of day-to-day expenses of operations and surgeries etc. Business services started collapsing due to the lack of finances and there was a massive gap between what was existing and what was needed by the people.
CBM’s first response to the outbreak was to redirect our efforts as much as we could, within the framework of our programme, to support the mental health and psychosocial response to the outbreak.
CBM projects in Sierra Leone
The ‘Enabling Access to Mental Health’ Programme (EAMH) supported by CBM has been active for the past four years in Sierra Leone. Addressing the consequences of mental health is an important part of standard Ebola response. Today, this programme focuses more on the specific mental needs of people affected by this disease. It provides mental health facilities to families of Ebola victims, children who are now orphans, health workers who are under a huge amount of stress and survivors who are marginalised by their families and communities.
The programme has dedicated three blocks to:
- Block 1, Capacity Building: support the 21 mental health nurses trained by the EAMH programme in the districts, so they can provide services for those who are suffering the consequences of the outbreak. Other efforts, like the provision of trainers and specialists to prepare teams of other organisations (such as child protection) are also being made.
- Block 2, Advocacy: The EAMH has also established the Mental Health Coalition that brings together stakeholders to advocate for the inclusion of mental health in the government’s agenda. The Mental Health Coalition has been engaging from the beginning of the outbreak with the response pillars of both, the Ministry of Health and the Ministry of Social Welfare, to ensure that the mental health component of the outbreak is not neglected and that local actors are taken into consideration. The Coalition, being one of the main actors in this area, works in close collaboration with WHO, UNICEF, and the other NGOs.
- Block 3, Awareness: Radio programmes and support to the other blocks are being provided, to raise awareness about the psychosocial consequences of the outbreak, and to fight stigma and discrimination.
To address the massive increase in needs CBM has also added more resources to scale up support for psychosocial disability. We have collaborated closely with the WHO to write a standard manual for psychosocial first aid (both in English and in French). This manual is currently being used by national governments, WHO and other international and local NGOs in Sierra Leone, Nigeria, Mali, Guinea, Togo and Liberia.
In Sierra Leone the Mental Health programme has been the strongest programme supporting services outside psychiatric hospitals. It has deployed nurses who are the main referral for people doing counselling.
Building Resilience for persons with disabilities during the Ebola Crisis
Another project has begun to ensure the resilience of people with disabilities to the outbreak. CBM has liaised with our local partners in Sierra Leone to adapt all official messages from the WHO, UNICEF and the government, to ensure they are accessible for people with disabilities.
We are adopting a participatory approach in this project – our partners are conducting training sessions for Organisations for Persons with Disabilities (DPOs), who in turn train communities in the villages. We have involved key organisations in this project – specialist schools for hearing impairment, amputee groups etc. so that people with disabilities can have a say in how they want messages to be transmitted to them. Right now our collaborating local partner organisations are identifying other DPOs and organising workshops.
Disaster Risk Reduction and preparedness in Nigeria and Togo
We are strengthening capacities of Mental Health workers to provide mental health support in crisis situations. All these projects are strongly focused in working through our local partners, capacitating them, working in collaboration and therefore, assuring sustainability and continuation after the Ebola crisis period.
Beyond the realm of mental health, CBM is supporting existing partners involved in eye health in Sierra Leone, to sustain their programmes and to reduce the vulnerability of their target group to Ebola. The partners have had to scale down their eye health activities in their catchment areas thereby depriving communities of much needed eye health service. A person who is blind is doubly vulnerable compared to able-bodied members of society due to the fact that they require support in their daily living as a result of an inaccessible environment. A key strategy Ebola health workers are promoting is the “don’t touch rule” to reduce the spread of infection. Such a rule, to a person who is blind completely immobilises them and elevates their risk of infection to Ebola.
In this context, CBM eye health partners aim to: increase the knowledge of their staff and traditional leaders regarding Ebola to enable them to effectively sensitize communities in the catchment area; and to work with DPOs to reach out to persons with disabilities especially persons who are blind.
The current Ebola epidemic has overloaded and stressed health infrastructure in the affected countries; the number of health care workers – already insufficient before the outbreak – has gone down even further as many health workers became infected and lost the fight. Social stigma towards survivors of Ebola and their families has increased thus worsening distress and isolation. Family and social ties have been severed; cultural practices have been over-turned; and livelihoods have been severely strained.
In future, the affected countries, and the international community will have to engage at a much wider scale to re-establish the socio-cultural, economic, and political systems, which Ebola has severely shaken. This will be a critical and indispensable step if the affected countries are to overcome future public health challenges like the current one.
In the coming months, CBM will participate, with other development agencies and the governments of the three affected countries, in a major conference looking at lessons learnt in mental health and psychosocial support from the outbreak, and how we can work together to rebuild mental health services.
I’ve just returned from a trip to India where I visited one of our CBM partners, Naman Sewa Samiti, in rural poor Madyha Pradesh. I was there to visit an inspiring project, Inclusive Organic Farming. On my outward journey, at Heathrow Airport, I bought a packet of twiglets; little did I know then, how valuable they were!
Betul District in Madhya Pradesh, is deemed by the Indian government to be one of 250 poorest areas in the whole of the country. To live here is to know what it is like to lack clean water, to live in poverty, and to struggle for hope.
Imagine then, living against this backdrop with a disability. There is no NHS, no benefit system. Yes, extended family and the sense of community are impressive support systems, that have long since disappeared from the so-called ‘developed’ world, but in rural India, despite being officially outlawed, the deeply-rooted caste system is strong and pervades religious belief.
This is not good news for the person with a disability. Some see them as having bad karma, people guilty of some misdemeanour in a previous life.This means that discrimination abounds towards people with a disability. Too often, they are disempowered, considered to be of far less value to employers, and sometimes, abandoned in their home or pushed out to beg on the street.
Inclusive Organic Farming
CBM UK Partner Naman Sewa Samiti has been working with with people with diabilities in the area since 1994. Historically this has been done through spice making, cooperative and credit banking, self help groups and health education.
Since 2004 Naman has been working with farmers living with a disability, or those caring for a family member with a disability, and empowering them in a new, accessible, far more cost-effective and productive way of farming; organic farming. The results have been stunning. The stories of transformation moving and inspiring.
Take Gajanand and Sangwata for example. Proud parents to twin boys Atul and Praful. Their boys were born with extra special needs, and life has been a struggle. Like most people in the area they are farmers. Farming is difficult enough, but throw in twins into the equation, especially twins with extra needs and challenges and, well, you can imagine.
When the boys were 8, their mum and dad had to make the gut-wrenching decision to send them away to a residential special school, miles from the famiily home. The lack of transport meant that Gajanand and Sangwata did not see their precious boys for weeks, even months at a time. Even if they could have got there, they were in financial dire straits brought on by their inability to pay for the chemicals to sustain their farming. They were desperate.
One day a field-worker from CBM UK Partner, Naman, got to hear of their plight. The couple were introduced to Inclusive Organic Farming. Over the following year, their fortunes were turned around. They came to realise that organic farming, a method in this part of the world that uses plentiful natural resources such as animal dung and aromatic leaves, would cost them next to nothing. They applied, were interviewed, and joined the programme, one that involves checks/inspections, transparency and accountability.
Gajanand and Sangwata were able to grow their customer base, sell at the market and earn more. The small savings that they have been able to make has resulted in more visits to see their boys, and enabled them to put aside some money to contribute to their sons’ future security.
Not only that, they are both now involved in running groups for other parents and farmers who find themselves facing similar struggles.
The ugly face of poverty
I have seen many times, the ugly face of poverty, and how it blights beautiful people. I am sick of it. I hate it. Seems to me we have three fundamental choices that confront us individually and as a society. We can ignore it, pretend that over two thirds of the planet’s population do not live this way, we can see it and choose to do nothing about it, paralysed by our own lack of resources or the sheer size of the task before us, or we can try to play our small part in eradicating the obscenity and injustice of poverty.
I am so grateful to CBM UK that they consider I have a ‘few tools in the box’ to play my part. But if poverty is going to be tackled we all need to be on board. If we are going to see a fairer allocation of resources and wealth, then those of us who are in a privileged position to generate some, should, in my opinion, give some of that away. Actually it’s not all about giving, because there is something in the way that we are wired, that makes US, that makes me, feel good when we give. Giving is receving. Who doesn’t want to feel good? Who doesn’t like receiving something?
I want to shamelessly pull on your heart strings (and your purse strings for that matter). Look into the eyes of Raja, aged 6, living in a slum with a learning disability. Aged 6! He’s gorgeous, beautiful, but poverty has got him, and millions like him, around the throat and is strangling his life and hope for the future.
Humour me, just for 30 seconds. Look into Raja’s stunning eyes, and think. Think about yourself, think about your family, your loved ones, your friends. Then look up and give thanks for the roof that is over your head, and as you look up, offer up a thought/prayer for Raja, and ask how you can help, how you can play your part in loosening the grip of poverty.
I’m in Bangkok this week taking part in the first CBM joint Disability Inclusive Development (DID) training – ensuring that people with disabilities are included and involved in all development activity. The workshop is aimed at sharing international experiences of disability inclusive development and discussing good practice.
The workshop started today with participants from all nine CBM regions, four member associations, and international office to share experiences, good practice, resources, expertise, but also challenges faced whilst working towards disability inclusion.
The first day’s main focus was learning from examples from six regions in sessions that were facilitated in a very lively and creative manner.
A common point of discussion was moving from a mere welfare approach to a rights based development approach along the empowerment framework, and from a bilateral cooperation between CBM and the organisations it supports towards a true partnership that promotes mutual learning between the organisations.
A key issue discussed was the alliance with Disabled People’s Organisations which, because of their expertise, have an important role in the promotion of inclusion. Different strategies and methodologies for their involvement were discussed, and it was remarked that CBM has to not only look inwards but also acknowledge the different roles of stakeholders to ensure we draw on their specific strengths.
CBM’s role was seen to facilitate the link between disability stakeholders, as well as with mainstream organisations, governments, technical and finance partners. It was acknowledged that in order to influence change, DPOs require capacity development to enhance their professionalism.
The benefits of involvement of DPOs on these different levels are:
- Increased self-esteem
- Improved academic, vocational and/or professional skills
- Improved socialisation
- Improved awareness of disability rights, participation and accessibility
- Increased understanding of structures and processes
- Improved leadership skills
- Increased understanding of relations on all levels, from grassroots to global
These will together lead to increased empowerment.
One of the important learnings of the day was the importance of gender sensitivity in our work, for example not just disaggregation of data by gender but also breaking down the data for people with disabilities by gender, keeping the gender lens during implementation, featuring men in our documentation and footage, and ensuring men are allies.
Quote of the day:
“It causes the partner problems if they learn that I am coming to visit them.” (from a CBM staff member using a wheelchair)
“Inclusion is not just about disability, inclusion is about everybody.” (from a CBM staff member)