Your Perspective

This is a space dedicated to the voices and perspectives of MSF patients and staff
who are persons with disabilities. Get in touch with us if you wish to share your story and experience with MSF movement.

Photo by Kayode Egbeleye - MSF.

From patient to advocate: Mulikat’s journey beyond noma


Mulikat is a survivor of noma and a hygiene officer at the MSF-supported Noma Children’s Hospital in Sokoto, in northwest Nigeria. More than twenty years ago, she came from Lagos
to Sokoto to seek medical care and find hope. Today, she supports other people affected by noma and adds her voice to MSF advocacy for survivors of this devastating and neglected disease. 

Dr Marwan El Bast in front of the MSF clinic.

“Every small effort makes a difference and the power of will drives change”

Interview with Dr Marwan El Bast, doctor for chronic diseases at MSF clinics in Majdal Anjar and Bekaa, Lebanon.







Louise Limela.

"It is not about what you lost" 



Interview with Louise Limela, in charge of coordination and organization of MSF’s associative life in DRC. 







Photo by Kayode Egbeleye - MSF.

From patient to advocate:
Mulikat's journey beyond noma

Mulikat is a survivor of noma and a hygiene officer at the MSF-supported Noma Children’s Hospital in Sokoto, in northwest Nigeria. More than twenty years ago, she came from Lagos to Sokoto to seek medical care and find hope. Today, she supports other people affected by noma and adds her voice to MSF advocacy for survivors of this devastating and neglected disease. Here is her testimony. 

As a survivor, living with the sequela of noma is hard. Nobody wants to associate with you, nobody wants to talk to you, because of discrimination and stigma. But there is a way out: surgery brings a chance to heal. For a survivor of noma, coming to the Sokoto hospital is life-changing. Before I started my treatment, I had lost hope, but after the operations,
I began to understand that I am still a human being like others.  

The person who helped me realise it was Dr Adeniyi [Dr Adeniyi Adetunji, a Doctor from Nigerian Ministry of Health (MoH) in the Sokoto hospital]. He has changed everything for me. He motivated me go back to school. At that point,
I did not even want to try it, because of the stigma, because of how people looked at me whenever I came near them. But Dr Adeniyi encouraged me. He told me that I should see myself as a changed person. He wanted me to go to the community and to give back. So I went, and found motivation and courage.

At school, I studied health record management. In 2018, MSF offered me a job. If it hadn’t been for that offer, I don’t know where I would be, as I had nowhere to go. Today, I am a hygiene officer, working with cleaners and patients in the hospital. I make sure the environment is clean and I talk to patients and caregivers about personal hygiene. I also help our mental health team to support noma survivors, who are just like me in the past. I share with them my experience. I tell them that they should be very strong and that things will get better. They know I was in their situation before, some of them have even seen my picture taken before the surgeries. But look at me now! As long as there is life, there is hope, and with hope, there is nothing you cannot do.

My MSF colleagues are easy to work with and they see me as they see themselves. There is no stigma. I am very happy that they have accepted me in the organisation, it’s a great joy for me. We also have another colleague in the hospital, working for MoH, who is a survivor of noma, Dahiru. He works as a cleaner.

Doctors in Sokoto hospital should continue to empower patients and encourage them to return to school, so that they can become advocates. It’s a long journey, but when patients go back to the community after surgeries, they go back different. When you look at me, you can see that I have been through something difficult in life. But I don’t think about my past anymore. My goal is to inspire people. I want to share my story, so that everyone knows that noma is real and that there is ability in disability.

Dr Marwan El Bast in front of the MSF clinic.
“Every small effort makes a difference
and the power of will drives change”

Interview

with Dr Marwan El Bast, doctor for chronic diseases at MSF clinics in Majdal Anjar and Bekaa, Lebanon

Tell us a little bit about your background and your journey to working with MSF.
I was born to a poor family in the Bekaa Valley. In the 1960s I had polio, which left my left leg completely paralysed. I have to wear leg braces and I need a crutch to walk. I attended various schools which were not equipped for people with disabilities. To challenge myself, I decided that after I left school, I’d travel abroad and study medicine. I received a diploma in general medicine in Russia, then went back home and practised medicine in different locations around Lebanon. In 2016, I ended up with MSF. Working with MSF was like a dream come true, because of all I’d heard about the organisation when I still worked as a doctor for chronic diseases in a clinic in Majdal Anjar, in the Bekaa Valley.  

What challenges have you faced in your career within MSF? How have you addressed them?
It’s important to mention that my disability is medium, since I can move around with the help of my leg braces and a light cane, though it takes a lot of effort and it’s tiring. When I joined the MSF team, I knew I would work in exceptional situations and under emergency conditions. One of the main challenges I faced was that my workplace, and all the places where I had to go for meetings and trainings, were all in high buildings without elevators or other means of assistance for people with disabilities. Every day it was a struggle to climb the stairs in the morning and go down in the evening. It was the same with meetings and training rooms. I had to rely on friends to help me up the stairs. Other challenges were work and training spaces without accessible toilet facilities and so on. These challenges forced me to repeatedly ask for modifications and adjustments to the meeting and training areas and to the workplace. However, all my requests were met with obstacles that I will describe later. To solve these issues, I relied on my patients and my friends, sacrificing some of my independence.

Has MSF taken into consideration your physical condition or made any adjustments in the project or mission to facilitate your work?
As I mentioned earlier, I had repeatedly requested modifications to my workplace. On a personal level, people in the mission were considerate about my physical situation. Most would help me to move around, but the problem was the mission’s budget and the integration policies.

Integrating people with disabilities into a workplace is not about one individual case, but rather about the whole context of any project. It starts with fulfilling the right of people with disabilities to work, in line with the Universal Declaration of Human Rights and according to the Convention on the Rights of Persons with Disabilities. It requires a budget that allows the projects to adopt clear engineering and logistic standards to execute this right, including equipping workplaces and training staff to respect diversity. This would transform MSF centres and clinics into integrated and diversity-friendly spaces.

I should say that people in charge of the Lebanon mission were very considerate and helpful. They did everything they could to provide me with the necessary prosthetic devices. They understood the needs of people with disabilities who couldn’t access the clinics, and they offered them health services in a home visits programme. It is also worth noting that MSF management is aware of the significance of the integration policy. MSF Field Associative Debates (FAD) in Lebanon adopted the policy in 2019 and referred the topic for discussion at the highest local and regional platforms. Finally, I call upon MSF to adopt disabled integration policies across all of its programmes and missions.

MSF often operates in very difficult settings, under extreme conditions. How equipped is MSF today to employ staff with disabilities?
Traditionally, there is a strong misconception that integration is an extremely costly process. Allow me to tell you a funny yet meaningful story: An investor built a tall building and wanted to recruit people with disabilities among the company’s staff. For that reason, he installed a special, very expensive elevator. On the opening day, he showcased his project, including that special elevator. One of the people with disabilities said: ‘Personally, I’d be content with a small cane that I could use to push the elevator’s buttons. It wouldn’t cost more than 5 dollars.’

Yes! Making a building or an institution accessible and integrated would not amount to more than 10 percent of the overall establishment costs, based on recent studies. Any institution or business can do this by acknowledging the right of diversity, and adopting an integration policy, from the budget to the training and execution, regardless of the location and the circumstances of work. 

Of course, each place is different in terms of the intended use. For example, if a first aid tent is located at the top of a hill, it can only be reached by certain people, but if we relocate it downhill, everyone can reach it. Choosing the location is based on whether or not we adopt the integration policy.

What do you think needs to change within MSF for the inclusion of staff with disabilities to become a reality?MSF is a humanitarian organisation that provides medical services to people in the most need. People who flee wars and natural disasters are marginalised. But if they are disabled, then they are doubly marginalised. MSF doesn’t need to change but rather to adapt and add. Human rights and an absence of discrimination based on gender, religion, skin colour etc. are there, but we need to add disability. We need to take people with disabilities into consideration when planning and executing each project and to budget accordingly. We need to train staff in how to accept diversity. We need to adapt workplaces so that they are accessible to people with different disabilities and we need to employ more people with disabilities. We need to adapt our communications to cover wider audiences (sign language, braille etc.) As a strategic goal, we need to adopt an integration policy within our objectives and strategies.

Beeka Valley, Lebanon. Photo by Joosarang Lee/MSF.

What is the current situation for people with disabilities in Lebanon? What challenges and barriers do they face?
The absence of official statistics doesn’t allow for a clear picture regarding the size of the disabled community in Lebanon. Officially, there are somewhere between 50,000 and 100,000 people with disabilities based on international estimations. The actual number could be as high as 500,000 (10 to 15% of the population), in addition to about 500,000 among Syrian, Palestinian and Iraqi refugees. In 2000, Lebanon adopted Law 220 that regulates the rights/duties of persons with disabilities. Unfortunately, the law is not in effect yet, because it lacks implementation decrees. Additional, Lebanon hasn’t yet ratified the Convention on the Rights of Persons with Disabilities. 

Undee these circumstances, people with disabilities are marginalised, beginning with denying them the right to education (just five out of the 1,480 official schools in Lebanon meet the minimum requirements for accessibility). People with disabilities live in an environment that doesn’t allow them to access prosthetic devices at reasonable prices. Marginalisation extends to all aspects of life, including the lack of accessible transportation and almost no public spaces that acknowledge diversity. Generally speaking, the Lebanese state’s approach is based on pity instead of rights.

From a doctor’s perspective, what do you see as the most urgent action MSF should take to ensure better access to medical assistance for patients with disabilities?
As I mentioned earlier, MSF needs to adopt integration policies within the organisation’s policies. Therefore, MSF should establish health centres and clinics properly equipped to accommodate diversity, and dopt diversity standards across MSF communications. All of this should be in accordance with international laws and regulations. These issues are interconnected and very urgent.  

Do you receive people with disabilities in your clinic? What conditions with potentially disabling consequences are the most common among your patients?
Our clinic in Majdal Anjar is on the second floor. It is very difficult for people with disabilities to access its services independently. The question remains: are we fulfilling the principle of equality if we dedicate a clinic on the ground floor to people with disabilities? This is what we are doing at the moment, due to construction-related imperatives. Under these circumstances, our clinic receives people with disabilities and provides them with the same medical services available to others.    

When we say people with disabilities, we mean people who are unable, due to the circumstances around them, to carry out various activities. Thus, the problem is not in the person but in the surroundings. The disability equation is: D = C × EA, where D stands for disability, C for physiological capacity and EA for environmental accessibility. If EA can accommodate diversity, then it equals zero, therefore we don’t have disability, regardless of the physiological capacity of the person.  Therefore, a disabled person is prevented by the surrounding environment from carrying out normal activities due to a functional disorder. Thus an elderly person can be a disabled person, as can a child or a woman, or even a marathon runner after an accident, and so on. Most disabilities in our clinic are the result of accidents, wars and chronic diseases.  

Could you tell us about a patient whose disability story or journey to recovery from a disabling condition has particularly touched you on a personal or professional level during your time with MSF?
The first patient of a cold winter week came in with a grim face, absentminded and with his hands shaking. He didn’t say much and answered my questions with a few meaningless words. He had a prosthetic foot due to a diabetes-related amputation. He was leaning on his wife to climb the stairs. Before the amputation, he was a street vendor working on his motorcycle. The little money he made supported his seven family members and his aged mother. He couldn’t hide his tears when he told me that he was unable to work and relies on the support of charities and the help of the community. To address his needs, the whole medical team, which consists of doctors, nurses, social workers and a psychologist, worked with him and we were able to get him back to work using a motorised tricycle. Yes! Little details like these can make such a big difference. Seeing that grim face smiling is what motivates me to work towards change.   

Do you have any message for people with disabilities who aspire to a career in the humanitarian field or wish to contribute to their communities?
As people with disabilities, we are an integral part of the community, which cannot function as long as it contains marginalised groups. Our duties towards our communities oblige us to speak up and claim the rights that guarantee our humanity and our participation. Nothing is impossible with will and determination. Hope is our weapon. Every small effort makes a difference and the power of will drives change. 

Louise Limela.
"It is not about what you lost"

Interview

with Louise Limela - in charge of coordination and organization
of MSF’s associative life in DRC

Interview by Tamara Saeb, Head of Communications of MSF UAE, conducted in February 2019, ahead of the International Women's Day celebration.

Tell us how you started working with MSF.

MSF had a project treating the war wounded in the city of Kisangani in the Democratic Republic of Congo (DRC) during the conflict in 2000. I had just finished my studies and was caring for my grandfather. It was then that I started wanting to help others as well. MSF approached me and asked if I wanted to work with them and I accepted.

Then in 2008, I applied for a position in a project in Lubutu as store keeper, where I stayed until 2012. From 2012 until 2018, I worked in Masisi, initially as store manager then as a supply officer. And finally, since 2018, I have been responsible for coordinating and organising associative life of MSF staff here in Masisi, which was a recently created position at that time.

What are some of the challenges you faced in your career within MSF and how have you addressed them?
For some positions like stock management, I had to go up and down ladders to take things off the shelves, carry some heavy items sometimes, and this was not always easy. Similarly, when I was a nurse in an MSF emergency response, supporting the war wounded, I had to stand on my feet for many hours, which also was difficult in view of my physical condition, but I did my best to do my work. There are mountainous areas in Masisi, where I had to hike up and come down its difficult and slippery trails several times, and sometimes I fell. But that did not stop me from doing my job and reaching my goals.

Did MSF take into consideration your physical condition from the onset? And did you manage this on your own or did you get support?
There was no reference made to my condition. I was informed about what my job would entail and then I just threw myself into it. I was supported by my colleagues, but at the same time I did not want to always be assisted. Sometimes, I am a bit stubborn; I would feel too vulnerable if people always helped me and this would make me feel uncomfortable. This is why I would put in more effort. I appreciated that colleagues were supporting me, and wanted to do things for me, but I would resist letting them, as I wanted to make sure that I was doing my share as well. 

MSF often works in very difficult conditions. How equipped is MSF today to include people with special needs from a staff recruitment perspective? 
First, I did not notice that there are special considerations taken if someone with mobility issues applied for a position. I personally always applied to positions and I had to past tests, some of which I failed and others not, and so there are no ‘special favours’ made.

What do you believe should be improved for the inclusion of staff with special needs, including encouraging them to apply to positions they may think are not accessible to them? 
It is true that when I applied I was afraid that I would go to the interview and they would see my condition and would not accept me on that basis. But I mustered my courage and I was selected. One thing MSF could do is encourage people with special needs to apply when we publish job vacancies. They may be limited in one capacity, but have experience in another. If this is clarified, like me at the beginning, this will speak to those who may think that there are conditions that would prevent them from doing this job. And this would also mean MSF loses out on their other competencies because they are afraid to apply. 

In your current role and specifically within the associative life, what is the current level of awareness about the issue of inclusion? Is it something that is being addressed?
For the time being in DRC, this is not yet an issue on the agenda. However, from my side as a coordinator for our associative life, we have already put it in our objectives for this year. The idea will be to start sharing and disseminating information in each project, as well as before and during the field associative days (FADs) to sensitise people and give them practical advice about how to make where they work more inclusive. This should not be limited to recruitment; it concerns, for example, the way our facilities are built. There is nothing currently taken into account in that regard. From time to time I have to ask someone to help me to climb up stairs or use my crutches. There are small things that can be done to make our premises more accessible to people, for example in our bathrooms and meetings rooms. Even if they are a minority, we should allow for those with special needs to be integrated into MSF. 

And what about our patients?
Let me tell you an example; in our awareness campaign activities we go to communities and we are not sure whether people who are in need of our information can hear us, and whether it is easy for them to access the information we are providing them. While this may be important information for them, audience members that are deaf will not hear our messages and the blind will not see the visuals we use. Similarly, those with limited mobility may not be able to get to where we are holding our information and awareness sessions. And this is where we need to ask ourselves, and our communication, medical and logistics colleagues, what strategy should we adopt to ensure that our messages reach these different audiences. For example, if MSF is only talking about HIV on the radio that information will not reach those who are deaf and by default we are excluding them instead of including them. 

Can you tell us about a patient story or situation you faced that has inspired or touched you on a personal or professional level while working with MSF?
When I started with MSF during the war, I was my grandfather’s caretaker in a university-based health clinic. MSF was there treating war wounded; some were dying and there were no nurses because the majority had left to be with their families. Everyone had left and there were only two doctors and two other staff members around. When I started working for MSF, seeing all those patients who needed help, it meant a lot to me to be in a position to contribute and provide support. At the time, we had a dedicated room for patients who were deceased. One day, while checking on patients during my ward rounds, I noticed movement in the room and I immediately notified the doctors that there might be a survivor that may have been misplaced. And today that person has become an MSF staff member. Even though he lost one of his limbs, he works as a logistician in one of our HIV projects. We met again when I was working in Lubutu and he remembered that day. I had not realised that he was the same person I had pointed the doctors to. This has significantly marked me. I told myself that I have at least contributed to saving a life. I have a lot of passion for what I do and I love to be of service to others.

In the context of International Women’s Day, what would be your message to the women who have special needs who aspire to work in the humanitarian field or simply wish to contribute to their communities like you?I would tell them to take their destiny into their own hands. Not to be afraid, to face reality as it is because what hampers us is the fear, questioning ourselves. Am I going to succeed? Are they going to accept me? First, you start by accepting yourself so that those around you do so too. Second, push yourself and see yourself beyond your condition. If you focus on your shortcomings and believe that you cannot evolve, you will end up doing just that. You must look beyond and move forward, telling yourself ‘I am going to support others and I will make it happen’. It is a conscious decision that you need to take. You should start with yourself, if you don’t help yourself, others won’t do it on your behalf. And there are always good people ready to support you.

You have to free yourself. The issue with mobility and other disabilities is sometimes the resulting psychological complex people suffer from. I was like this at the beginning. You feel like everyone else is better than you and that you will not be able to make it, so it blocks the life of a person with special needs. I ask all these women to confront reality, start with accepting themselves and just give the best of what they have to offer. When you lose one limb, there are others you can develop and use. It is not about what you lost. And I am a living proof of that.

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