Category Archives: People with disabilities
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
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.
Nepal is not Haiti. The scale of the earthquake is of course very different. Around 8,800 people were killed in the first quake of 25 April, and a further hundred in the second quake in May. In Haiti the numbers reached 200,000 including many senior civil servants which effectively meant that large parts of the government became dysfunctional or non-existent. This is not at all the case in Nepal where the government is clearly structured and very active in the earthquake response, working alongside agencies such as CBM to distribute emergency relief as well as post-emergency non-food items such as tarpaulins, sanitary kits and corrugated iron sheeting. However, people with disabilities are disproportionately affected at times of crisis and my time spent in Nepal demonstrates clearly how the often sporadic and uneven response often fails to reach those who need it most.
I am wandering through the rubble strewn streets of Bhaktapur with social worker Pramita. We pass a line of people waiting for government relief who have been standing in the sun for several hours. At the front of the queue, the crowd at the kiosk window is 3 people thick and I try to imagine how someone with reduced mobility or a wheelchair user would be able to get to the front. “What happens if someone can’t come to collect relief supplies themselves?” I ask, thinking of others in more remote rural areas who may live several hours walk from anywhere accessible by road. “They ask a relative or neighbour to come for them, “ Pramita replies. “What happens if the relative or neighbour was killed or injured themselves, or is unable to spare so much time?” I ask. She sighs. “Then they might miss out,” she admits.
I learn more about the reality of this when I visit CBM partner, the National Federation of the Disabled Nepal (NFDN), an umbrella organisation representing a network of disability-specific bodies. The National President, Shudarson Subedi, describes story after story from these member organisations describing people with disabilities who were often just not aware of relief opportunities available, or unable to reach the distribution points which were many hours down steep hillsides.
NFDN has responded to this in a range of ways, including a project to introduce radio and SMS alerts to ensure those with hearing or sight impairment are aware of all rehabilitation opportunities. However, their most powerful approach has been in finding a stronger voice in the country’s rehabilitation efforts, working closely with the government to ensure that the “building back better” efforts are inclusive not only of people with disabilities but are inclusive of all those with specific and needs. In addition, they are helping to increase the extent to which people with disabilities are active participants in the decision making about reconstruction of health, education and livelihood systems and structures.
The next day I visit new CBM partner, the Spinal Injury Rehabilitation Centre in Kavre, which normally caters to around 40 patients with spinal cord injuries but is currently housing 110. To cope with this dramatic increase in numbers, CBM is supporting the hospital with emergency wheelchairs and anti-pressure sore cushions for earthquake affected patients. SIRC Director, Esha Thapa, explains that they might normally expect a patient to spend 3-6 months with them undergoing surgery and then extensive therapy and rehabilitation. However, with only 10 occupational therapists in the whole country, the rehabilitation phase is likely to take longer for so many new patients. SIRC would also expect to carry out around 50 home modifications in a year, but 90% of the patients who have been admitted with earthquake injuries have lost their homes.
We visit the stepdown facilities – huge tents erected in the hospital grounds – which allow those who have received surgery and rehabilitation at the hospital but who are not quite ready to leave the hospital. They can spend two weeks staying in the tents, being observed as they learn new ways of coping with daily tasks. The burden of this sudden physical trauma and the aftercare is a heavy burden not only on the injured person but also on their family or friends who stay with them at the hospital as primary carer. Esha describes one patient brought in by her neighbour who was forced to discharge herself far too early because the neighbour’s husband wanted her at home. Another left hospital before receiving any of her physical therapy treatment plan because she was frightened of missing out on the relief materials being distributed in her village.
But some are there for the longer term. One young boy was carried by his neighbours from the ruins of his collapsed house in which his parents were killed. But with no family and no home to return him to, they were unwilling to take him back once his treatment had been completed. Another man, having seen the photographs of his own destroyed house and the devastation of most of his village, had no desire at all to go home.
CBM has been working with local partners in Nepal for 30 years and the CBM country office and emergency response unit were able to respond within hours of the earthquake starting. CBM will be there not just for the weeks and months that follow the earthquake but, continuing to work through local partners and influence the government, for the years that will be needed to ensure that the post-emergency response and the rebuilding of the country’s structures and systems are inclusive.
Glaucoma is the second leading cause of blindness worldwide, after cataract. But unlike cataract, the blindness caused by glaucoma is irreversible. That’s why identifying the condition early and treating it effectively is vital to save sight.
In this blog, the second in our series showcasing how CBM is helping achieve the Vision 2020 targets towards eliminating avoidable blindness, CBM glaucoma specialist Heiko Philippin, who is based in Tanzania, East Africa, talks about his work treating glaucoma in Africa.
I started working at KCMC in Tanzania in December 2009. Each year, we carry out around 2,500 glaucoma examinations, some of the patients come repeatedly – so 1000-1500 patients with glaucoma each year. Around 100 or less would be children with paediatric glaucoma.
The main challenges are that patients present late – there are numerous different reasons for this – and that treatment options can be limited.
CBM is supporting the management and treatment of glaucoma at a number of different levels. Treating glaucoma is challenging – the condition requires life-long treatment and follow up. In large parts of Africa, we do not have all of the treatment options available as in Europe for example, though at KCMC we have a reasonable amount of treatment options, especially now also with the new laser treatment.
The appropriate treatment option depends on the age group, the stage of glaucoma and the amount of eye pressure reduction which is necessary. We usually start with eye drops or laser, if these are not feasible or not enough then surgical options come into place, mainly a procedure called trabeculectomy. Shunts, which reduce the pressure, are usually only used in desperate cases.
The choice of eye drops is limited in Africa compared to in Europe. In a lot of areas in this region, we only have one type of drop available, while in Europe there are 6 different groups of eye drops available. Over the years things have definitely improved in larger urban centres, though. At KCMC we can offer 4 different types of eyedrops, but this is not common.
The second group of treatment is laser – this is also limited – and the last treatment option is surgery. The most common is trabeculectomy; we can offer our services at similar standards as in any other country.
The next improvement is that we are planning to offer tubes (shunts) which reduce the eye pressure. Aravind in India has now developed a low cost shunt. Often the patient will have tried eye drops and laser before this option
CBM has helped with the procurement of eye drops, which are often not part of standard procurement, and has helped finance larger equipment, which would not be possible otherwise.
CBM has also supported training – I have received specialist training and now offer fellowships in Glaucoma to doctors in Sub Saharan Africa. CBM also offers training to ophthalmologists including the treatment of glaucoma.
I am currently running a trial for a treatment called Selective Laser Trabeculoplasty (SLT), thanks to a joint grant from Standard Chartered’s Seeing is Believing programme and CBM. SLT has been in use in the UK and elsewhere for several years, but this is the first time it is being trialled in Sub-Saharan Africa. We want to find out if the laser treatment is equal or better than the standard treatment which is currently available here. If it is equal or better, then the laser treatment will offer pressure reduction for one or probably more years without the need for the patient to come back every few months for eye drops. Patients are often not able to take the eye drops for different reasons, so we are hoping that the overall treatment of glaucoma will improve.
Of the patients I see, 100 or less are children. They often have a different type of glaucoma, they can have congenital glaucoma or secondary glaucoma due to other eye problems, both are challenging to treat.
I see a lot of patients who are blind according to the WHO definition – visual acuity of less than 3/60 – roughly they could count fingers up at a distance of 3 meters. If you use this definition then a lot of my patients I see are legally blind.
Glaucoma patients who have low vision or even have no visual function left, who cannot differentiate between light and darkness we refer to the low vision department, where we advise on low-vision devices so that they are able to do daily activities better. We can also assist for example in using a cane so they can move around more safely, and we refer them to CBM partners, Tanzanian Society for the Blind.
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!
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.
As the UK celebrates Mothering Sunday this weekend, 15th March, we’d like to tell you about one very special mother. Roy is 26 years old and has four children. She lives with her husband Ronald and four children in a remote village in Uganda, East Africa, about 100km northeast of the capital, Kampala.
Like millions of mothers around the world, Roy works hard to support and care for her children. It’s not easy to bring in enough money for the day-to-day essentials and school fees for her two older children – primary education is not free in Uganda. She and Ronald eke out a living growing sweet potatoes, maize and beans and making bricks.
But what makes Roy particularly amazing is that one of her four children – Denis, aged 8 – is actually her half-brother. He came to live with Roy and Ronald just a year ago. We’ve been sharing Denis’ story recently as thanks to CBM supporters, he is currently being treated for Blount’s Disease, which causes his legs to bend and makes walking slow and painful.
Denis had been abandoned by his biological mother and was living with his father. But he was not treated well.“While all other children at my father’s place were sent to school, Denis was neglected. He didn’t bring the boy to a doctor or send him to school. Instead the father gave him funny and abusive names because of his disability. He has even beaten the boy”, explains Roy.
Sadly, due to the stigma attached to disability and the lack of support and education for parents, this story is all too common. But Roy looked at Denis and saw a boy who needed love and care. She took him in and is now mother to him, along with her three other children.
Without treatment, Roy knows that Denis’ future would probably be bleak. “If he remains with this condition he will face very difficult times in future. He may never be independent. He may need help at all times. He will have a lot of pain and his mobility will always be limited. And he might never find a woman who wants to marry him”.
But the treatment for Blounts’ Disease is far from easy for an 8 year-old to go through. Denis spent a tearful night in hospital before his surgery, a long way from home. Since initial surgery to straighten his leg, he has to wear a metal brace or “fixator” on his leg, with daily physiotherapy exercises that often cause him pain.
It’s hard to imagine how a child could go through treatment like Denis’ without a mother’s love and support. Roy is with him every step of the way. At hospital, hers was the first face he saw when waking up from surgery, encouraging him to drink some tea and then have a rest. Before travelling home with him, she learned about the exercises he must do to ensure that his leg heals strong. Every day, she encourages him to do his exercises, encouraging him to persevere in spite of the pain. She must also work hard to help Denis keep his wound clean to prevent infection – not easy when you live in a dusty environment with no electricity or running water at home.
CBM supporters, outreach workers and doctors are all playing a vital role in helping Denis on his treatment journey, which is vital for him to build a better future. But without Roy by his side, showing him a true mother’s love and care, none of this would be possible.
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)