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.
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.
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.
By Professor Allen Foster, Professor of International Eye Health, Co-Director of the International Centre for Eye Health for London School of Hygiene and Tropical Medicine and former President of CBM International.
The World Health Organisation in 2010 estimated that there are 39 million blind people in the world, but in 80% of these cases the blindness can be prevented or treated. In the year 2000 the WHO together with a group of International Non-Government Organisations, including CBM, launched “VISION 2020 – the right to sight”, a 20 year initiative to eliminate avoidable blindness in the world. So what are the results?
There have been good successes, in fact in 2000 the projected number of blind people in the world for 2010 was well over 50 million, so the actual 2010 figure of 39 million has to be seen as an improvement. There have been good results to control diseases like river blindness (onchocerciasis), vitamin A deficiency (in children) and trachoma, all of which were major causes of blindness in poor countries. There have also been improvements in the delivery of eye care services generally around the world, but particularly in the middle income countries of Asia and Latin America. However the fact remains that about half of all blindness, around 20 million people, is due to cataract which is very treatable.
Cataract occurs when the clear lens in the eye opacifies, becoming like a frosted window. There are a variety of causes, but most cataract is associated with the aging process – the older we get the more likely we are to develop cataracts.
The good news is that the cataract can be removed and its function to focus light on the retina can be replaced by a small artificial lens placed inside the eye (intra-ocular lens) at the time of surgery. The operation is safe and has a very high success rate so that most people have excellent restoration of sight providing the eye has no other problems.
So if the operation is so good why are there 20 million people around the world blind with cataract? The main reason is poverty. Many low income countries do not have enough trained eye specialists. For example in the UK there are about 20 eye specialists for every million people while most African countries have only 1 to 3 eye specialists per million people; and those that are available, for family reasons, tend to work in larger cities which is often far away from poor people living in rural areas.
In order to make cataract surgery available to blind people CBM has been supporting the training of ophthalmologists, cataract surgeons, eye assistants and nurses throughout Africa for many years. A lot has already been achieved; for example in Tanzania there used to be 5 ophthalmologists when CBM started to support eye training and now there are 35 together with over 60 trained cataract surgeons and more than 300 eye nurses / assistants; however there is much more to be done if the goal of VISION 2020 to eliminate avoidable blindness by 2020 is achieved.
It is estimated that Africa needs another 2,000 eye specialists (to achieve 4 specialists per million population) by 2020, but at present less than 100 are being trained each year. Without the eye surgeons, people will not be able to receive cataract surgery and the problem of blindness from cataract will continue. CBM in partnership with other like-minded organisations and Ministries of Health in Africa is seeking to address this urgent health need to train eye health workers for low income countries particularly in Africa.
Professor Dr. Allen Foster, former CBM International President (2006-13) and Medical Consultant/Director (1985-2005), is Professor in International Eye Health and Co-Director of the International Centre for Eye Health at the London School of Hygiene and Tropical Medicine. From 1975-1985, Allen was a general medical officer in a mission hospital in Tanzania. In 1998 he received an O.B.E. (Order of the British Empire) ‘For services to Ophthalmology in the developing world’.
On 4th June I travelled to Nepal to join CBM’s team of local staff and emergency response specialists, who have been working since the devastating earthquake on April 25th to ensure that people with disabilities and injuries receive the help they need. Here is my first blog from Nepal, after a very moving day in Bhaktapur.
This ancient city lies nine miles east of Kathmandu. At its heart lie four connected courtyards containing some of Nepal’s most famous UNESCO World Heritage Sites, many of which were damaged or destroyed by the earthquake that shook Nepal on 25 April 2015. In the main Durbar Square, around the base of one of the damaged temples, is an exhibition of photos of some of those who lost their lives, either because they were unlucky enough to live in old or poorly constructed homes or caught by the falling masonry in the web of narrow streets that characterise the area. Many of the photos show the faces of elderly men and women, or very young children, both groups disproportionately affected by natural disasters, but there are also faces of many other people, caught indiscriminately by either the first quake, or the one that followed two weeks later on May 12.
In one picture, a teenage girl in school uniform smiles shyly at the camera. Just a few yards away, a group of girls and boys of around her age are donning hard hats and picking up shovels before dividing into teams and heading off in different directions. Their matching t-shirts declare them to be members of the local community who are volunteering in street clearing initiatives. This is one of the worst hit areas of the city and the lanes are still clogged with rubble, sometimes piled under the eaves of damaged houses, sometimes still filling the street so that you need to scramble over to get through. Despite other parts of Kathmandu being almost untouched, here there is not a road or side street which remains untouched. Everything is covered with a thin film of dust, and the few shopkeepers who have ventured to open up again, busy themselves continuously with dusters and rags.
I am with Pramita Shrestha, a social worker from KOSHISH, a CBM local partner that offers psychosocial counselling and trauma care in the Bhaktapur District. Pramita describes the additional support the psychologists and counsellors are providing, not only for those with mental health problems that they were already supporting, but also to an estimated 3,500 earthquake survivors who will need psychosocial support over the next few months. This is one of the less visible after-effects of a disaster of this scale but one which touches on the lives of so many survivors. Schools have just reopened again and we are passed by rows of neat white shirts and royal blue skirts, matching ribbons bouncing above – but numbers are down as many children are too anxious to leave their parents, too scared to enter the school building or, with the many aftershocks still being experienced, too sleep-deprived to function well. People have also started to return to work where they can, or to the social activities they used to enjoy and we see a few small groups of men on the verandas of undamaged houses playing cards or board games, while women sit in twos and threes knitting. But there are also those who sit in their doorways staring into space, and KOSHISH is reporting new cases every day of people of all ages struggling to come to terms with what has happened. Sadly for all those that come, as many remain unwilling to seek treatment for any kind of mental health condition which remains widely misunderstood and taboo in Nepal, as in many places.
We come across a single house collapsed among a row of otherwise intact buildings. Further along, two stories of a house withno side wall stand open to the air, as if a huge serrated knife has sliced vertically through the building. As we approach, we see two figures rolling brick pieces down a corrugated iron sheet propped against the wall. On every street we come to, similar activity is beginning to take place. People on rooftops, shovelling debris. People pushing wheelbarrows of dust out of alleyways or carrying piles of bricks to the truck that cannot make its way down the blocked streets where life has started to go on once again. Around the next corner, we come across a slogan daubed on a partially collapsed wall, “We will rise again”. Later someone walks past with this printed on a t-shirt.
The photos in Durbar Square are one of the ways that the city is mourning its loss and it will take decades before the country is close to full recovery. But this slogan has started to appear across the city and perfectly reflects the resilience of a nation that is already working hard to pick itself up and move forward. KOSHISH was there in the days immediately following the earthquake, providing psychological first aid as vital as the bandages being so much more visibly applied, and it will continue to support for the long term the efforts of the Bhaktapur community to “rise again”.
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.”