Tobias Pflanz is CBM’s Field Communication Manager. In January 2014, he met 8 year-old Denis, who suffers from Blounts Disease, which makes walking slow and painful. Thanks to CBM supporters, Denis has started treatment to straighten his legs at CoRSU hospital in Uganda, East Africa. Tobias is following Denis’ progress, meeting him regularly and sharing updates. In this blog, he shares his personal response to Denis’ story.
Denis’ story has moved me deeply right from the start. Despite his disability, the pain in his legs, in spite of so many challenges and sadness in his everyday life – other children laughing at his deformed legs – Denis is still a cheerful boy. He enjoys singing and joking around with his nieces and his little nephew. His joyfulness touched my heart immediately.
And then there is his half-sister Roy who adopted Denis into her young family when their father abandoned the boy. Roy and her husband don’t have much and have to care for their own three children. Nevertheless, Roy did not hesitate to take the boy in and look after him as if he was her own son. That impressed me: having a child with a disability would be a curse in the eyes of many people here. But Roy clearly loves Denis.
Still, she couldn’t afford to pay for any intervention. Denis is another strong example that shows why the work of CBM and our partners – like CoRSU Hospital – is so important. Only through one of CoRSU’s outreach clinics did Roy get the information that help was available – and that there was hope.
I showed pictures of Denis from before intervention to my 6-year-old daughter. She asked me: “Daddy, can CoRSU help Denis?” I said: “It will take some time, but in a few months Denis will have legs almost as straight as yours.” “That’s great”, my daughter exclaimed. “Will you then show me pictures of him again?” I certainly will.
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)
I’m the Programme Manager for CBM UK and I visited Luz and her family when I was in Peru. I am enclosing a short report that I wrote after my visit.…
I met Jeick and his mother Luz at their home in Lima, Peru, where they live with Luz’s mother, four brothers and sisters and their children. A small space for such a large family.
Luz explained about the traumatic birth of Jeick which resulted in him being born prematurely at 27 weeks, weighing just over 1kg. Luz became upset as she described the experience which bought back memories of how she felt at the time, not knowing if her son was going to live or die, let alone see.
Luz had to leave Jeick in hospital after just three days, where he stayed for a further two months. She struggled to look after her other two children and visit the hospital every day to see Jeick. It took Luz an hour and a half to reach the hospital each day and the costs soon started to add up.
Luz showed us photos of Jeick from when he was born and still in an incubator. He looked so tiny and vulnerable.
Jeick was regularly screened for ROP where staff had been trained by CBM’s partners in Lima. At three months old he was diagnosed with ROP and given an urgent appointment. But by this point Luz could not afford to pay for the transport to hospital and so they could not make this first appointment.
When we stepped in to pay for her transport, our ophthalmologist was able to urgently conduct the laser treatment and after a short stay in hospital Jeick was able to return home.
It’s been over four months now since Jeick had his treatment and his vision continues to develop extremely well; early signs are that he will have good eye sight and potentially not even require glasses.
Luz told us how thankful she was for the treatment and support she received from CBM It was a real inspiration to meet Luz and hear about her experience and how CBM had made such a vital difference to their lives – not only had we provided sight saving treatment, but we also supported Luz in the rehabilitation process. Luz says she is very grateful for the treatment that Jeick received thanks to the programme and is very happy that her “angelito de diós” (little angel of God) is doing so well now.
Seeing Jeick now, you would never know what a traumatic experience he and his family went through. A real pleasure to see such a happy family.
I work as an ophthalmologist and Medical Director at two CBM projects in Sierra Leone, the Lowell and Ruth Gess UMC Eye Hospital in Freetown and the Baptist Eye Hospital in Lunsar, which is situated about 100 km from the capital city.I am acting as Medical Director at the UMC hospital presently because of the absence of an ophthalmologist there.
Impact on CBM-supported eye-hospitals
The Ebola epidemic has significantly affected eye care work in both hospitals, especially over the last 3 months since the declaration of the state of emergency in the country. During this time several districts have been placed under quarantine, restricting the freedom of movement of people around the country.
There is increasing hardship because of the deteriorating economy. Many people have lost their sources of income because of redundancy from their jobs or losing their businesses. As a result of this we’ve experienced 60% reduction in patients’ turnout at the UMC hospital in Freetown and over 80% in Lunsar. Revenue generation in the two hospitals has also been significantly affected and we are struggling to find enough funds to pay salaries and cover the day to day running costs of each hospital.
The staff are given day to day updates and tips about the Ebola outbreak during our morning devotions. We have frequently emphasised the need for preventive measures particularly in the workplace. All patients visiting our hospitals are subjected to thorough self-hand washing either with soap or chlorine as well as temperature checks. It is compulsory for all staff attending to patients to wear gloves for any procedure that may require contact.
For the last week, all surgeries have been temporarily suspended because one of our colleague doctors was infected while treating a patient and is currently at the Ebola treatment centre. He was the head of the Kissy General Hospital – the hospital that we share the same compound with in Freetown. The general hospital has been locked down but the eye hospital where I work has continued to run.
He was a close colleague of mine. So far, 5 doctors have contracted the Ebola virus disease and died from it – he is the sixth and is fighting for his life. [Update: Dr Martin Salia, the surgeon from Kissy General Hospital, has been airlifted to the USA, where he remains in a critical condition - Reuters].
On a personal note, my family and I have come very close to contracting the Ebola virus in recent times. 2 months ago my wife had a caesarean section. She was operated on by the Spanish doctor who contracted Ebola virus disease in Sierra Leone and later died in Spain. The doctor had already started to feel unwell around the time of the surgery. He even fainted and almost collapsed towards the end of the surgery on my wife that day. Therefore I placed myself and my family in semi-quarantine for 21 days. I was really worried. I thank God that he protected me and my family.
My wife and baby are ok – we had a baby boy, his name is Victor Emmanuel. I gave him the same name as the doctor who delivered him, Dr. Manuel Garcia.
Impact on day to day life
The epidemic is now rapidly spreading and expanding in the city of Freetown. Everyone is living in constant fear and suspicion of each other, the epidemic has affected every aspect of life.
It has virtually paralysed large sectors of the economy in SL. International businesses on which the economy of the country depends have either moved out or significantly scaled down operations, resulting in the loss of much needed national revenue from such organisations or companies.
Many institutions have taken drastic measures to better manage their limited finances. One example is the Lungi International airport which has been compelled to slash salaries of workers by 40% due to the suspension of many international flights. Small businesses have experienced significant drops in daily sales as the purchasing power of most people in the country has reduced due to lack of jobs or mass redundancy in many institutions.
Local trade fairs called “lumas” used to be organised in different parts of the country on a weekly basis and were the source of income for most petty traders. However, as a result of the law on avoiding mass gatherings, these markets have been banned since the declaration of the state of emergency.The situation has also brought a significant reduction in income generation for these small scale traders also.
On the social front there has been virtually no form of night life since the banning of operations in all night clubs and cinema halls. Many Sierra Leoneans are ardent supporters of the European club football, especially the UK’s Premiership. However sports centres have been banned from operating so many fans cannot watch their teams live on television.
On the other hand, exchange rate of the Leones to international currencies keeps on falling. There has been one main factor for price hikes especially for essential commodities such as rice and other foodstuffs.
The Ebola outbreak stated during the active farming season for most areas of the country. At the same time, epicentres of the disease were quarantined. This included whole districts and led to the disruption of most farming activities as farmers abandoned their farms.
Most people in quarantined areas have been prevented from getting engaged in their day to day business activities for their survival. This has resulted in hunger, and starvation for many people. To salvage the situation, the international aid agencies such as the World Food Programme and local Non Governmental Organisations have started helping out with food supply to affected people.
Impact on people with disability
We don’t have specific data on disabled people so far directly affected by the outbreak. However in any crisis situation people with disability are at greater potential risk of the negative impacts of that situation and this one cannot be an exception.
One of the major precautions to take to prevent someone being infected by Ebola is avoiding body contact. However, blind people, in particular, depend on their sense of touch and human guides to get around. The guide is usually a younger member of the family who is sighted. In such situations it can be difficult to prevent the spread of Ebola by body contact from the guide to the blind person or vice versa.
One incident made an impression on me a couple of weeks ago; I witnessed a blind couple walking along the street in Lunsar. They had a small boy aged around 10 years leading them. The wife’s right hand was placed on the shoulder of the little boy and the husband’s right hand was on the right shoulder of the wife. Such a manner of contact is a recipe for transmission of the virus.
The mentally challenged and hearing impaired are also at greater risk unless the right preventative measures reach them in the right format.
Another major area of impact is on the source of livelihood for those disabled people who depend on the benevolence of the public. With the present economic difficulty they are less likely to get the same support as before. Some disabled people have also lost their care givers or bread winners to the Ebola virus disease.
On the other hand the majority of people who are avoidably blind cannot access eye hospitals under the prevailing situation to have their sight restored.
Public education and Ebola
As a medical doctor with some background knowledge about the deadly nature of past Ebola outbreaks in other countries, I knew that the country was in for big trouble immediately when we heard about the deaths of many people from unexplained diarrhoea and vomiting in a small town bordering with Liberia in late May 2014.
The outbreak in this small part of the country was mismanaged due to several factors. One was the lack of sufficient response from the Government coupled with the denial factor and resistance from the locals. If this small region had been cordoned off immediately this outbreak would not have reached this magnitude as it has now.
The illiteracy rate in SL is very high. As a result there is a lot of denial and resistance to the containment efforts of the Ebola virus disease. The communal lifestyle of most African homes, where overcrowding is commonplace, creates a suitable environment for the spread of the deadly or rapidly fatal Ebola viral disease. So unless people are repeatedly educated about Ebola and its preventative measures, it will continue to spread.
There is also the issue of traditional burial practices especially for society leaders, which has been one of the main ways that people have been infected with the virus.
Everyone has the right to life,and therefore access to informationfor the prevention of disease and the maintenance of health, so it is necessary to embark on disability inclusive awareness campaigns to capture all persons in society without discrimination.
Message to people in the UK
I want to take this opportunity to say a big thank you to CBM UK, to CBM Lomé [West Africa Regional Office, Togo]and to all those who contribute in diverse ways to offer resources to bring this project together.We thank you all for your generous donation.
We are still far from beating the Ebola virus disease in Sierra Leone. In fact, it is spreading faster than ever before, by a factor of 9 according to theAfrican Governance Initiative’s recent assessment. According to the latest official figures, 4683 people have been infected and close to 1200 have died, but even these are underestimates.
Meanwhile as I said before, the 6th medical doctor to have contracted Ebola is a young surgeon and close colleague of mine who is presently at the treatment centre in Freetown fighting for his life.
So once more we thank you all for standing by us during this difficult and dark period in the history our country.
Your contribution is certainly directed towards a worthwhile cause, for which you will receive god’s richest blessings in return.
Even in a ‘developed’ country like the UK, disabled people are more likely to be poor than the able-bodied. Government figures show that about 20% of British families with at least one disabled member live in relative poverty compared to only 15% of other families.
There are two key reasons for this. Firstly, disability is an expensive business. Most significantly disabled people face extra costs due to their impairment. They may need to buy specialist equipment, they may have to carry out more laundry, they may need to use taxis because of inaccessible public transport or they may require an extra room to accommodate a personal assistant.
Secondly, it can be hard for disabled people to find paid work. Although there has been some progress, disabled people are still more likely to be unemployed than their non-disabled counterparts. While more than three-quarters of the British working-age non-disabled population are in employment, less than 50% of working-age disabled people have a job. As a result, many disabled people have to rely on benefits and, not surprisingly, have difficulty making ends meet.
I know from personal experience how difficult it can be to obtain employment. After graduating, I spent six months out of work and had to apply for more than 40 jobs before I managed to persuade an employer to recruit me. This was despite having a degree from Cambridge University and a postgraduate diploma. Fifteen years later, I have a rewarding, well-paid job. Like millions of other people, I have to cope with the daily challenges of living with a disability. However, I’m one of the lucky ones. At least I don’t have to cope with poverty as well.
A research report from the International Centre on Evidence in Disability (ICED) formed the basis of a discussion today with the UN Committee of Experts on the Convention on the Rights of Persons with Disabilities.
It was a pleasure for me to facilitate a dialogue between the Committee and Dr Hannah Kuper, co-director of the ICED at the London School of Hygiene and Tropical Medicine on their recent research report ’The costs of exclusion and the gains of inclusion of persons with disabilities‘.
The first part of the research provides the evidence of the link between poverty and disability, described by Dr Kuper as ‘strong as the evidence between lung cancer and smoking’.
The second part of the research looks at three sectors, namely; health, education and employment, providing evidence from low and middle income countries on the costs of exclusion and the gains of inclusion of persons with disabilities…
Did you know that In Bangladesh, reductions in wage earnings attributed to lower levels of education among people with disabilities and their child caregivers were estimated to cost the economy US$54 million per year?
Or that the inclusion of people with sensory or physical impairments in schools in Nepal was estimated to generate wage returns of 20%?
Read more of this wonderful research, and disseminate it to the people who listen to economic arguments, but always ask for the evidence!
On Sunday 21 September, more than 300,000 marchers flooded the streets of New York City making it the largest climate change march in history and putting this important issue on the top of the global agenda. In addition, in conjunction to the opening of the 69th UN General Assembly, Secretary-General Ban Ki-moon hosted the UN Climate Summit on Tuesday, 23 September. It was lovely timing since it was also the Fall Equinox (Spring Equinox for my friends in the Southern Hemisphere – !Hola Uruguay!)
Due to this high-level event, climate change has been a pervasive topic at the UN and in NYC and this theme will continue to be important as the post-2015 development agenda progresses. One example is that the newly appointed President of General Assembly, Sam Kutesa, will hold a High-level Event on Combating Climate Change in June 2015.
With this increased emphasis on climate change and related disaster risk reduction (DRR) – in the post-2015 process, it is crucial that persons with disabilities are included in these conversations, debates and initiatives. Why is this important?
It is important because weather-related disasters are increasing in number and severity and the number of people affected by them has risen. Disasters and their aftermath have a huge impact on persons with disabilities who are among the most vulnerable in an emergency, sustaining disproportionately higher rates of morbidity and mortality, and at the same time being among those least able to access emergency support. For example, research indicates that the mortality rate among persons with disabilities was twice that of the rest of the population during the 2011 Japan earthquake and tsunami (UN, 2013). Moreover, for every person that dies during a disaster, it is estimated that three people sustain an injury, many causing long-term disabilities, such as the case in Haiti after the 2010 earthquake in which approximately 200,000 people are expected to live with long-term disabilities as a result of injuries (UN Enable, 2013).
Persons with disabilities are often forgotten, and most likely to be abandoned during disasters (DiDRRN, 2013)as well as more likely to be invisible and overlooked in emergency relief operations (Choy, 2009). When the emergency hits they may have difficulty reaching safe areas, become separated from family and friends which is a key to survival and coping, have trouble accessing vital emergency information, or lose assistive devices such as wheelchairs, crutches, prostheses, white canes or hearing aids. In addition, moving and transferring persons with disabilities requires handling techniques to avoid injury or further injury. Yet, the first-ever UN global survey of persons living with disabilities and how they cope with disasters indicates that the percentage of those with disabilities who could evacuate with no difficulty almost doubles if they were given sufficient time. This underlines the importance of early warning systems and ensuring that warnings reach all members of the community regardless of any mobility or communication barriers (UNISDR, 2013).
For the few who are evacuated, shelters are not accessible and consequently survivors with disabilities are also excluded from the emergency responses: including food, basic needs and health support. In addition, in the aftermath of a disaster, the damage to infrastructure caused by extreme weather events can reduce or completely remove access and safe mobility. Inclusive practice in all relief operations is needed to ensure that response and service delivery is not fragmented but mindful of all sources of vulnerability (Kett & Scherrer, 2009).
- Strong advocacy by and with persons with disabilities is needed to ensure disability inclusion is a key criterion in all emergency relief operations
- The evidence base concerning the vulnerability of persons with disabilities in weather-related emergencies, and key factors, which create resilience, need to be greatly strengthened, with key messages disseminated.
- Evaluations of both emergency and development programmes, in areas affected by a changing climate, need to clearly include disability in their terms of reference.
- Early warning systems need to ensure that warnings reach all members of the community, including persons with disabilities regardless of mobility or communication barriers.
- In the reconstruction phase following severe weather and other emergencies, it is essential that universal accessibility standards are applied in all public buildings and spaces, water and sanitation points and for the homes where people with mobility disabilities live.
Choy, R. (2009). Disasters are always inclusive: Vulnerability in humanitarian crises, Development Bulletin, Special Issue No. 73, April 2009, Development Studies Network, ANU, Canberra.
DiDRRN. (2013) Inclusion of Persons with Disabilities in Simulation Exercise. From: www. didrrn.net/home/
Kett, M and Scherrer, V. (2009). The Impact of Climate Change on People with Disabilities. Report of e-discussion hosted by The Global Partnership for Disability & Development (GPDD) and The World Bank (Human Development Network – Social Protection/Disability & Development Team).
UN. (2013). Panel Discussion on Disaster resilience and disability: ensuring equality and inclusion. United Nations Headquarters on October 10, 2013.
UN Enable. (2013). Disability, natural disasters and emergency situations: A need to include persons with disabilities. From: www.un.org/disabilities/default.asp?id=1546
UNISDR. (2013, October 10). UN Global Survey Explains Why So Many People Living with Disabilities Die in Disasters. [Press release 2013/29].