Category Archives: Disability
International Women’s Day is an annual opportunity to celebrate progress made towards equality for women. But it is also a reminder of how far we still are from this goal – particularly for women with disabilities who are experiencing violence around the world.
Violence against women and girls has been described as a ‘global pandemic.’ And it is easy to see why. 1 in 3 women has experienced physical or sexual violence in their lifetime. Women with disabilities are even more likely to face violence, experience it for a longer period and are less able to escape or access justice.
Globally, adults with disabilities are 1.5 times more likely to be victims of violence and for adults with mental health conditions this rises to a staggering 4 times more.
Men with disabilities are also at a much higher risk of experiencing violence and, although there is very little research, this violence is likely to be driven by many of the factors that cause violence against women. While the numbers are likely to be smaller than women, this is still a significant problem which is rarely discussed.
Why does violence happen?
Largely, women with disabilities are victims of violence for many of the same reasons as women without disabilities. Violence against women is often a result of gender relations and gender norms and the unequal power relations between men and women. This is amplified for women with disabilities who experience more discrimination and marginalisation and are much less likely to be viewed as equals – either in their households or communities. This increased level of discrimination means that their risk of experiencing violence is also amplified.
Having a disability also brings additional risk factors – such as living in an institution or being dependent (either for care, mobility or finance) on a family or a partner.
Low levels of reporting
The problem doesn’t just end with the high number of women with disabilities facing violence. Globally reporting of violence is low, especially when this violence is committed by a partner or family member. Women with disabilities are also less likely to report violence and even if they do they are less likely to be able to access justice.
Many of the reasons that women without disabilities don’t report violence or can’t access justice are the same as for other women. For example, they may be afraid of the consequences of reporting, may feel that nothing will be done or not know who to talk to. For women with disabilities the multiple discriminations that they face make them even less likely to report. Many more women with disabilities do not work and so they are more likely to be financially dependent on family or a partner – and so the consequences of reporting could be more severe.
Women often do not tell anyone because they feel that they won’t be believed – this is particularly an issue for women with intellectual disabilities or mental health issues who are less likely to be seen as credible witnesses. As one woman in our research in Cambodia put it “I have never told other people because they will not think it is true, and since my father-in-law is the vice chief, most people in the community respect him. They are afraid that they will not be invited to participate in the community or receive gifts.”
And so what can be done?
In recent years violence against women and girls has risen up the agenda as a development issue, including high level political commitment from the UK and inclusion in the new Sustainable Development Goals. If organisations are serious about tackling violence against women and girls – they must reach women with disabilities.
The Department for International Development commissioned a really interesting piece of research looking at ‘What works’ to tackle violence against women and girls – and we were really pleased to see that it included a paper on disability. Unfortunately there was so little out there documenting what works that the paper was hardly able to come to any conclusions.
It is vital for us to build more evidence on what work to tackle violence against women and girls with disabilities. Programmes addressing violence must make sure that they understand the specific barriers that women may face in accessing their programmes and look to overcome these. We need to make sure that data on violence against women and girls is being disaggregated by disability – otherwise we won’t know who is affected and who is being reached by prevention efforts.It is also important that wider work to tackle discrimination and stigma against women with disabilities continues, to reduce the underlying causes of violence.
The discrimination that women with disabilities face may in some cases make them harder to reach – but that doesn’t mean they aren’t worth reaching.
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.
October 10th is World Mental Health Day. This year we address a key issue facing people living with psychosocial disabilities (disabilities caused by mental illness): dignity.
The theme chosen for October 10, 2015 is “Dignity in mental health”. The word ‘dignity’ comes from the Latin word meaning worthiness. It is the idea that everyone has the right to be valued and respected. But taking it one step further, dignity is also about how people feel: treating someone in a way that they feel valued and feel respected. When people are living with dignity, they feel confident and they are able to make decisions for themselves.
Worldwide, high levels of stigma and discrimination strip people with psychosocial disabilities of dignity and prevent them from the experience of living as, and being treated as, equal members of society.
At CBM, we believe that all people with disabilities deserve to live in a world that treats them with dignity. Here are 3 ways that we believe can promote the dignity of people with psychosocial disabilities:
1) Creating accessible, people-centred care following a humanitarian emergency
Knowing that disasters can negatively influence the mental health of a population, CBM sees humanitarian emergencies as an opportunity to ‘build back better.’ In Sierra Leone, for example, the Ebola virus disease outbreak impacted the mental health of the country in many ways. Not one person was excluded from the experience of stress, fear and loss. CBM used this opportunity to mobilize resources and establish, with other partners, 14 mental health units across the country. Previous to the outbreak, mental health care was only available at the Psychiatric Hospital and in a couple of health units outside of the capital city. Similarly, in the Philippines, following Typhoon Haiyan, CBM used the opportunity to establish mental health units with trained staff who could visit and support people with psychosocial disabilities in their communities.
Creating accessible mental health care following an emergency seeks to reduce the long term psychological impacts of a disaster. However, it also brings care closer to people with psychosocial disabilities, allowing them to rebuild their lives with dignity: close to their homes and families with trained staff who treat them with respect.
2) Supporting opportunities for voices to be heard
An important part of dignity is providing people with the opportunity to make choices and to have control in their lives. It is not enough to speak on behalf of people with psychosocial disabilities. Instead, what is needed is environments that offer support and build confidence, so that people with psychosocial disabilities can find and use their voices.
Maya Angelou put it best when she defined dignity: “Dignity. It means a belief in oneself, that one is worthy of the best. It means that what I have to say is important, and I will say it when it’s important for me to say it. Dignity really means that I deserve the best treatment I can receive. And that I have the responsibility to give the best treatment I can to other people.”
Since 2008, CBM has supported the Presbyterian Community Based Rehabilitation (PCBR) programme based in Northern Ghana, to establish self-help groups (SHGs) with the aim of providing mutual support, and enabling people to re-enter the community, both socially and economically. Now, with over 23 SHGs throughout the upper east region, the groups provide an important source of support to people with psychosocial disabilities and their families. Through the groups, members have been able to challenge discrimination, share support and advice, and attain financial security in a resource poor setting.
3) Advocating for change in global priorities
While local developments, such as the establishment of services and self-help groups, are necessary to promote dignity, progress on a global level is equally important.
In September, 2015, the Sustainable Development Goals (SDGs) were launched. The SDGs build on the Millennium Development Goals (MDGs) and clearly state the priorities for governments and development agencies over the next 15 years. During the drafting process, FundaMentalSDG was formed: an alliance of organizations who believe in a common vision of seeing the SDGs consider the needs of people with psychosocial disabilities.
When the UN adopted the SDGs in September this year, we saw the exciting inclusion of mental health and well-being in the document. This success is in part due to the work of FundaMentalSDG, of which CBM is a founding member.
Mental health was not mentioned in the MDGs. Therefore, the inclusion of mental health and well-being in the SDGs indicates an increased respect for people with psychosocial disabilities on a global level. Equally important, we anticipate a greater investment in interventions that will lead to less human rights abuses against people with psychosocial disabilities.
On World Mental Health Day 2015, we are promoting the value and worth of people living with psychosocial disabilities. Whether we invest in improving access to care, the establishment of self-help groups or changing global priorities …it should all be done in the name of dignity.
“Things have a price and can be for sale but people have a dignity that is priceless and worth far more than things.” – Pope Francis
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.
It could have been me: Anne Wafula Strike responds to BBC3 documentary “Worst Place to be Disabled?”
CBM Ambassador Anne Wafula Strike gives a personal response to Worst Place to be Disabled?, a documentary about disability in Ghana shown as part of BBC3′s recent Defying the Label season.
I sat with my son, overwhelmed with tears, as I watched a so-called “healer” talk about how he kills children with disability, because they have a curse. We were watching “Worst Place to be Disabled”, a BBC 3 documentary in which British journalist Sophie Morgan, a wheelchair user, uncovers the stories of abuse and discrimination faced by people with disabilities in Ghana.
When I was growing up in Kenya this was what was meant to happen to me. My parents were told to feed me poison, abandon me and leave me to die. If my mother and father had listened to them, then I wouldn’t be here to tell the story today.
Our neighbours were afraid that my “curse”, in fact paralysis caused by polio, would spread to others, would affect the babies of pregnant mothers. If my parents refused to “send me back where I came from”, they threatened to burn our house down. So our family had to flee the village.
It saddens me to see how families are still going through the same thing even now. That there is still such prejudice, such lack of knowledge and education; even now, people believe that having a disabled child is a curse, caused by some fault of their own. And worst of all, that people can murder a child without anyone lifting an eyebrow.
But sadly I know that serious abuse towards people with disability is still happening in Kenya, even in the village I was bought up in. I know of cases where disabled children have been locked up in animal pens, viewed as a liability, their disability something shameful. Children with autism or intellectual disabilities locked away because they “make too much noise”. When I was in Haiti filming footage about disability, we were spat on in the street. It underlined for me to me that the views held by society are much more disabling than my own impairment.
The stories of horrendous abuse and discrimination experienced by disabled people around the world need to be told, which is why I am so glad that Sophie Morgan and BBC 3 were able to make this documentary. But now it’s time for action – the Government of Ghana should be ensuring that murderers and criminals are detained and that local people are educated about disability; the UN should be investigating these breaches of the UN Convention on the Rights of People with Disabilities.
It also struck me that the documentary did not tell the whole story. As with so much coverage of Africa, nearly all of the focus was on the negative, the most extreme examples. Understandable, perhaps, in this type of documentary, and undoubtedly true – but not the whole truth. We did see a couple of the organisations doing good work in Ghana, for example the Orthopaedic Centre where the child Blessing had her prosthetic leg fitted. But there are also many more positive stories about disability in Ghana that were not told – inspiring Paralympians, great work being done by NGOs, self-help groups which enable people with disabilities to challenge negative attitudes, like the ones supported by CBM.
There’s so much amazing work being doing in Africa by and for people with disabilities, including by my Olympia-Wafula Foundation and NGOs like AbleChild Africa and CBM, to provide practical support and change attitudes in some of the poorest communities.
While we must uncover and talk about the atrocities that the documentary uncovered, we also shouldn’t ignore those people with disabilities who are running businesses, raising children, being teachers, campaigning for their rights. We need to show the stories of those brave and loving parents who are supporting their disabled children in spite of the stigma that surrounds them, as my mother and father supported me.
I’d like to see a follow up documentary exploring the possible solutions to this. I’d like to sit down with these families who would be prepared to abandon their children or have them killed, to find out what drove them to do this. Is it their neighbours, tradition, lack of knowledge, fear?
Most of all, I’d like to tell those families my story and show them what a girl from a village in Kenya can achieve. They need to understand that they can still have dreams for a child who is disabled. They could be killing a future Paralympian, a professor, a teacher, a parent, the next President of Ghana. This is the message we need to get across to families and communities, and to disabled people themselves.
The stories we saw from Ghana are shocking, this type of abuse should never be allowed to happen in any part of the world. But we also need to remember that disabled people face prejudice and barriers in every country, including our own. In the UK, benefits cuts are causing great suffering for disabled people. A UK politician has stated that children who are likely to be born with autism or other disabilities should be aborted. So children with disabilities don’t even have the right to be born. Stigma is still real, even here with the NHS and education system, we can’t build a level playing field. So how far can we judge parents of children living in poverty, with no free wheelchairs or medical care, no social security, no free state education?
I’m very glad that this documentary was made – Sophie Morgan and the documentary makers did a fantastic job – but I hope that it is the beginning and not the end of discussion about disability in Africa. We need more documentaries, more discussion and more action. Attitudes to disability can and must change, and people in the UK can help that happen by supporting organisations like CBM, AbleChild Africa or the Olympia-Wafula Foundation. But most of all, we need to show families in Ghana – and across the world – that children with disabilities are not a curse or a liability, that they can grow up to be mothers, teachers, business owners or paralympians. That is the most important story that we need to tell.
Anne Wafula Strike is a Paralympic wheelchair-racer, disability-rights campaigner and author. Originally from Kenya, she is a CBM Ambassador and founder of the Olympia-Wafula Foundation.
Late last year, I had the opportunity to meet Valieth and Susana, two young sisters who had been identified through a community screening. They both had congenital cataracts. We arrived at their home and were greeted by the girl’s grandmother Fausta. As the she told us about their life and the challenges that she faced trying to take care of two young girls, she soon broke down in tears.
Fausta told me about the Bible verse that has helped her get through the hard times and give her the strength she needed and it is a verse that I have reflected on many times since my visit. James 1:12 Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life which God has promised to those who love him.
Although I knew that the surgery for the girls would not be some magical fix for the family’s hard life, I knew that it would ease the burdens they face and provide the girls with a brighter future, giving the girls an opportunity when they grow up to repay their grandmother for her love and kindness.
When I returned to meet them at the end of June, I was not disappointed. I was greeted by the Fausta and the girls, who skipped and danced around me. Smiles beamed from their faces and I could see instantly that the support that CBM had given for the surgery was life changing. They were delighted with the teddy bears that had been given to CBM by one of our supporters and continued to play as I talked to Fausta, and I knew that for Valieth and Susana that life had changed for the better.
I showed the family a printed version of their story with photos from last year, and they gathered around remembering the day that they had travelled to hospital and had their sight restored. I also shared with Fausta prayers from supporters in the UK for which she was truly touched. I felt humbled by the thanks that she gave to CBM and wished that our supporters could feel this joy first hand.
The girls have been back to the hospital for follow up, but will need to go again, it is likely that they will both need glasses and Valieth will potentially need more treatment on one of her eyes to ensure she has the best vision possible. But the future is looking brighter now, the girls are enrolled in school and are fulfilling Fausta’s dream of getting an education.
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.
As we watch the events unfold in Nepal since April 25, we are reminded of the extra challenges that people with disabilities experience during disasters. Those with physical disabilities may struggle to flee to safety or travel long distances for essentials like food and water. The methods used to communicate an approaching disaster may not consider the needs of people who live with blindness, deafness or learning disabilities. Temporary shelter facilities, as well as other relief and longer-term recovery services, may not be accessible. And suddenly there is an influx of people experiencing new disabilities within the population; physical trauma caused by an earthquake, for example, may lead to the amputation of limbs or spinal cord injuries.
At the same time, people with disabilities show incredible amounts of resilience in emergencies. There are countless stories of people with disabilities helping their own community members. I think back to working in Haiti with CBM after the 2010 earthquake. Key members of our community rehabilitation team had disabilities themselves, yet refused to let disability equal inability. They worked hard within our teams to ensure that the needs of their whole society were being met.
This week, in the UK, we celebrate Mental Health Awareness Week- a perfect time to talk about the importance of mental health in disasters. People with psychosocial disabilities (those living with disabilities caused by mental illness) are often left behind during a disaster. In the Philippines after Typhoon Haiyan, we heard stories of people living with mental illness who had been chained in their homes and were unable to flee to safety when the typhoon was approaching. In addition, access to mental health care – and psychotropic medicines in low and middle income countries is an ongoing issue. During a disaster, the ability to access care and medication often shifts from challenging to virtually impossible.
The World Health Organization (WHO) estimates that after an emergency, the number of people experiencing mental disorders can as much as double within the population. At the same time, normal signs of distress within a population increase greatly. This information highlights something very important. First, there is a great need to continue to care for people with psychosocial disabilities after a disaster. In fact, the need has now doubled. But secondly, suddenly there is a large amount of psychosocial stress being experienced within the general population. This stress is a normal reaction to loss and to exposure to distressing events. Many will recover from these experiences, however a number of those who need psychosocial support can benefit from simple, cost-effective approaches such as Psychological First Aid.
CBM recognizes the importance of mental health and psychosocial support during emergencies. We also place a high value on the knowledge and understanding that our local partners have during emergencies within their countries. This is why CBM works hand in hand with our partners during and after emergencies.
In Sierra Leone, for example, our Enabling Access to Mental Health programme had already established an active mental health advocacy group, the Mental Health Coalition – Sierra Leone. The Coalition had become a focal point for mental health system development, in collaboration with the Government of Sierra Leone. When the Ebola outbreak started in West Africa, the Coalition was in the perfect position to support the coordination of mental health and psychosocial actors in Sierra Leone. They were able to advocate for better psychosocial support for health care workers. They also pushed to have mental health professionals (trained under the Enabling Access to Mental Health Programme) placed strategically throughout the country to offer support for those experiencing signs of distress and ongoing care for people with psychosocial disabilities. The Coalition supported the adaptation of training and activities to the local context, and advised on the development of strategies, policies and basic packages. Because we had a trusted partner already engaged on the ground, CBM was able to mobilize financial support so that they could continue their impressive work.
Now, looking to Nepal, CBM is currently implementing response work, again with strong partners, to offer mental health and psychosocial support. Already, CBM is a partner with a national level mental health group- KOSHISH. Our emergency response unit based in Kathmandu has been liaising with them since the earthquake struck, as part of our overall response, and we are now at the stage of providing them with support to be able to meet immediate psychosocial needs of people affected by the earthquake, and to improve access to basic relief aid as well as to specialise services for persons with psychosocial disabilities. In addition, we will draw on the knowledge and experience of our partners doing Community Based Rehabilitation work throughout Nepal. They are in the perfect position to provide their communities with psychosocial support, and we are already working to ensure that relevant staff members are also trained in Psychological First Aid.
People with Epilepsy often face similar stigma and discrimination in their communities as those with psychosocial disabilities. For this reason, we encourage our partners to also include people with Epilepsy into our mental health and psychosocial support programmes.
Addressing mental health and psychosocial needs is essential for complete and effective disaster response. I hope that by highlighting the work of CBM in emergencies, the experience, rights and needs of people with psychosocial disabilities, are clear. But more importantly, I hope to have shown a way to approach these challenges – not only will this strategy improve the situation for many individuals affected by the current emergency, but will build their resilience for the future, and therefore that of their families, communities and society as a whole.
CBM is working to bring urgent relief to people with disabilities in Nepal after the earthquake on 25th April, and provide vitally needed healthcare for both physical and mental health needs.
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.