fistula

2014/03/06

Alisa Swidler

“Too many people don’t even know what fistula is, because they don’t experience it as an issue.” Alisa is aRead more →

2014/03/06

Aisslta Bissang-Kondet

“I’ll tell you the story of a 9 year old girl I can’t manage to forget.” Aisslta – known toRead more →

2014/03/05

Dr Jaymie Ang Henry

“The fast food industry solved problems of global planning, global logistics – if they can, why can’t we? Why don’tRead more →

2014/03/05

Janet Dewan CRNA, MS

“I cared for a woman who had been suffering as an outcast for 25 years, since her first baby. ItRead more →

2014/03/05

Barbara Margolies

“Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’tRead more →

2014/03/05

Dr Angela Davis

“There’s a strong cultural message that somehow having an elective C-section is an ‘easier’ way to give birth.” Dr AngelaRead more →

2014/03/05

Priscilla

2014/03/05

Dr Michelle White

“It’s powerful to see how generous they are in their love and affection for each other.” Michelle is Head ofRead more →

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Alisa Swidler

“Too many people don’t even know what fistula is, because they don’t experience it as an issue.”

Alisa is a leading philanthropist and campaigner for human justice and health issues.

How has motherhood changed your perspective on maternal health?
Comparing levels of care during childbirth – it can get pretty dire. In the U.S. they really hold your hand, they walk you through the tests, the vitamins, the questions. Then you go to a hospital in a low-resource setting and there are no bed sheets in the hospitals, just old torn mattresses. Women deliver, if they make it to hospital, on a cold metal frame.

We talk about health all the time with our children – we’re so lucky when it comes to that.

What’s your greatest frustration when it comes to women accessing healthcare worldwide?

It’s not always a priority for everyone.

I think there could be more focus on it – we should come up with better ways of addressing certain issues, and even exposing them.  Too many people don’t even know what fistula is, because they don’t experience it as an issue.

When did you first learn about obstetric fistula?

About eight years ago, through Richard Branson and Virgin Unite.

That was after I had all my children.  So I actually didn’t know it was a risk; it was not even a concern while I was pregnant.  That’s how it should be, because no one needs to suffer that trauma.

If it does happen – because transport is an issue, because a woman in labour can travel days to get to a hospital – we need to see that it’s not a taboo, that they get the surgery they need.

What can people do about it?

Ask questions.  I’ve been on so many boards in the last 20 years and I’m always the one who won’t stop asking questions.  About accountability, about the specifics, about how money is being spent.

There’s a lot of duplicating efforts in global health and it really bothers me – because there are so many areas, like access to safe surgery for women, that still need attention.

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Aisslta Bissang-Kondet

“I’ll tell you the story of a 9 year old girl I can’t manage to forget.”

Aisslta – known to everyone as Aicha – has been a senior anaesthetic and resuscitation technician in Lome, Togo since 1993. She’s a member of many organisations and has held the position of president and secreatary general. She is married with 3 children, and loves to exchange ideas and experiences.

Selon vous, pourquoi l’accès à la chirurgie est-il essentiel pour la santé des femmes? / Why is access to safe surgery essential for women’s health?

Les femmes ont recours à la chirurgie pour 2 grandes raisons. Une: parce qu’elles sont malades et le traitement est obligatoirement chirurgicale, et deux: elles sont en bonne santé mais elle cherche à devenir mère ou au moment d’un accouchement par césarienne ou alors à la suite d’un traumatisme suite à un viol.

Women need surgery for two main reasons. One: because they’re sick and like anyone else they need surgical treatment, and two: they’re in good health but require obstetric care, like a C-section for pregnancy or following a rape trauma.

Quels sont les obstacles qui empêchent les femmes à obtenir les soins dont elles ont besoin? / What are the obstacles that stop women from getting the care they need?

Brièvement: l’ignorance; les moyens financiers dans les familles; l’absence de structure de santé à proximité.

In brief: lack of awareness; financial resources of the family; lack of any reachable health facility

Que souhaitent faire les jeunes filles dans votre entourage lorsqu’elles seront adultes ? / What do young women in Togo want to be when they grow up?

Si je fais le tour des jeunes filles dans ma propre famille ”africaine” sur 11 filles qui sont au lycée 3 veulent la santé et 2 veulent être médecin mais pas de chirurgie. Les autres c’est finance, gestion ou droit. Oui il y’a un obstacle : l’importance des études (les matières sont exclusivement scientifique) et la durée de la formation très longue

If I look at the young women in my own ‘African’ family, of 11 girls who are at school, three want to go into health and two want to be a doctor – but not surgery. The others – finance, management, law. But obviously there is an obstacle: the importance of education and the long period of training.

Pourriez-vous nous raconter l’histoire d’un patient qui vous a marqué? / Can you share the story of a patient that has stuck in your mind?

Je vais raconter l’histoire d’une fillette de 9 ans que je n’arrive pas à oublier. La fillette pendant les vacances et les jours où il n’y a pas l’école aide sa mère à vendre des oranges. Les oranges sont dans un plateau et elle se promène avec. Tous les passants peuvent l’interpeler et acheter. Alors un monsieur lui dit qu’il veut acheter tout le plateau et lui demande de le suivre chez lui car il n’a plus d’argent sur lui. Arrivé chez lui il dit à la petite de venir prendre son argent à l’intérieur de sa chambre. De la, il viola sérieusement la petite qui a perdu connaissance. Comment a-t-il fait, personne ne sais mais la petite a été retrouvée non loin du petit marché de son quartier et transportée à l’hôpital en état de choc. Les gynécologues ont réussi à faire l’hémostase et avec la réanimation bien conduite l’enfant a la vie sauve mais avec d’important dégât FRV +FVV (vagin vessie et rectum sont confondu). Il a fallu une intervention chirurgicale pour que cette petite soit sauvée.

I’ll tell you the story of a 9 year-old girl that I can’t manage to forget. When the girl didn’t have school or during the school holidays, she would help her mother sell oranges. She’d take a tray of fruit and walk about with it, so that passers by could see. One day a man told her he wanted to buy the whole tray – but she’d have to follow him home, because he didn’t have any money. He called for her to take the money from his bedroom where he raped her. She was found unconscious near the market and taken to hospital in a state of shock. Doctors managed to revive her and stop the bleeding, but they had to repair her bladder and rectum as she’d received a traumatic fistula. It’s only because of surgery that this little girl was saved.

Quel est votre objectif de feminisation de la profession médicale dans les prochaines décennies? / What is your goal for women in the medical profession in the coming decades?

Faire aimer les matières scientifiques aux jeunes filles en proposant des prix d’encouragement ; en soutenant financièrement leurs études afin qu’elles n’arrêtent pas parce que les parents n’ont plus les moyens Pour les femmes qui travaillent déjà organiser des rencontres internationales d’échanges, encourager les promotions professionnelles ou organiser des voyages de perfectionnement pour améliorer leurs prestations.

I want incentives for girls to love science subjects; financial support for their studies so that they don’t have to stop when their parents can’t afford it. For women already working in the field I want to organise international meetings, encourage them to learn and push themselves and develop their skills.

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Dr Jaymie Ang Henry

“The fast food industry solved problems of global planning, global logistics – if they can, why can’t we? Why don’t we?”

Jaymie is co-founder and Executive Board member at the International Collaboration for Essential Surgery (ICES). She is the producer and director of “The Right to Heal,” a global surgery film. She is a lecturer in global health at the UC Berkeley School of Public Health.

Why is safe surgery essential for women’s health?

Childbirth is an all or nothing phenomenon. When you have your baby it’s happening right now, and 15-20% of the time it is likely to involve a complication requiring surgery to save the mother and baby’s life. We know exactly what to do in these situations, we know the step-by-step process. But it’s as if people are saying: “ok – it depends where you live.”

This is life we’re talking about, a process with us since the dawn of humanity. The fact that there are so many women who are marginalized because they don’t have access to safe surgery feels like a failure of our civilization, a failure to bring this technology to half the population of the world.

You’re a surgeon, but you’ve made a documentary, The Right To Heal, about the need for access to safe surgery. Why the change in medium?

I grew up in the Philippines, and have first-hand experience of lack of access to healthcare. But working in ‘global surgery’ felt increasingly like an idealistic, academic experience. We were looking at it through a second-hand lens.

I started traveling, and meeting people, talking about their experience of not having access to something so vital. And I thought the gap was really just about letting people know. We become complacent knowing everything for us is working well. But how can you be a human being and stand by, not do something about it?

We have to let people know, and trust in their humanity and compassion to really want to do something about this.

On an individual level? A societal level?

There’s a fistula surgeon, a woman from Sri Lanka who went to Tanzania eight years ago to train, and couldn’t leave. She saw the need and said, how can I leave when I can do so much? People have been pushing quietly on their own, but it also needs to be done bigger.

Imagine how much more we can do if we worked together on an international level. If we’re able to reach government and policy makers, get people who hold the purse strings to say absolutely, this is something that needs to happen.

This is not something that can be solved by individuals, but by a community.

There have been decades of talk about a push for global surgery. Do you think things are actually changing?

Well I feel like our generation is becoming increasingly global. There’s this huge opportunity with technology – through social media, the internet – to cross those huge divides. We care about women in India, we care about women in the Philippines more than we used to.

A problem like obstetric fistula, which is really one of those horrible, medieval conditions that should have been gone a long time ago – it has been solved a million times over by other industries. The fast food industry solved problems of global planning, global logistics – if they can, why can’t we? Why don’t we?

We really have to be very clear in our message: we cannot compromise on this. It’s something that we can’t shortchange.

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Janet Dewan CRNA, MS

“I cared for a woman who had been suffering as an outcast for 25 years, since her first baby. It only took us 30 minutes to repair her fistula.”

Janet is a nurse anesthetist based in Boston, U.S.A. She first worked in Niger in the 1970s and has returned there many times, and now works regularly in Rwanda with the International Organization for Women and Development, an organization that provides fistula repair surgery to women suffering from this condition.

Is there a gender imbalance in access to surgical care?

When there are shortages in healthcare, women and babies are often the ones least advantaged.

It’s not at all unusual to find in the maternity section that the monitoring or anesthesia equipment is inferior to what’s used even for minor surgery in the same hospital. Childbirth is something that is considered just a natural process. But without a skilled birth attendant, and access to resources such as safe surgery if a c-section is required, it carries a high mortality with it. There is a vast global disparity in maternal and infant mortality statistics between well resourced and developing health systems.

What is an obstetric fistula, and how does it happen?

There are two types that we see. The first is obstructed labour – the woman is in labour for days without progress. The baby’s head pressing against her pelvic organs, so that no blood flow can get through, causing ischemic tissue damage.. The baby may die before the women receives help , and by the time it passes she has developed an ischemic hole, either between the vagina and the bladder or the vagina and the rectum.

Fluid freely flows out, of her vagina and she becomes incontinent.

The second type of fistula we see results from damage to pelvic organs after surgical interventions, Ceasarian Section. These injuries tend to be higher, involving the bladder and uterus or in the cervical region and often require open abdominal surgical repairs.

Can access to surgical services reduce the risk of fistula?

Absolutely. Fistula is a direct result of lack of available maternity and obstetric care, and the rate of C-section in some low-resource settings is very low, in others skilled health providers and other resources are not available for surgical and anesthesia care. when C-section is indicated.

Lack of personal and capital resources contribute to surgical care being performed under less than the safest circumstances. Some women do not have access to skilled services. Without an adequately trained birth attendant who recognizes the need for intervention and knows how to get a mother to it, complications are either not treated or treated too late so that complications , such as obstetric fistula result.

My own specialty, anesthesia, is not always available to care for the mother and infant. Anesthesia care goes beyond simply administering a spinal anesthetic. Monitoring the mother, so the earliest signs of serious complications are detected while they are correctable, is probably the most important anesthesia function. Anesthesia personnel also care for fragile infants. Anesthetists need to recognize their role in safe surgery goes beyond the technical. Current anesthetists should have the opportunity to participate in continuous education opportunities so they can be mentored in current principles of safe practice, interpretation of monitoring and appropriate interventions,.

Without the training and the resources it’s impossible to meet global targets for safer surgical care.

Does fistula ever occur in wealthier countries?

It does happen occasionally with urgent or repeat sections or can occur following pelvic radiation therapy.. At our hospital in Boston a woman suffered a fistula following a second urgent C-section – but we were able to repair her, with all that fancy equipment and skilled personnelwe have. She’s fine, the baby’s fine. Of course she wasn’t happy to have the complication, but that’s how treatable fistula is, how little suffering should go with it. Two weeks after her injury she was repaired and home caring for her healthy baby and toddler.

On the other hand I cared for a woman in Niger who had been suffering as an outcast for 25 years, since her first baby. It only took us 30 minutes to repair her fistula under spinal anesthesia

What can women around the world do about this?

I see quite a large number of female medical students these days – in Rwanda I have met many outstanding female medical students and I think this is likely to make a difference. Nurses and midwives also have an important role if they educate women about their bodies and normal birth and empower them to seek the appropriate care they deserve. Safe maternity care is a core component of the right to health.

It’s estimated that up to 500,000 women are suffering with the condition with 50,000 new cases at year. With our current resources we have the capability to treat barely 12,000 of these cases every year. The fact that fistula is a too common obstetric complication that occurs almost exclusively in the poorest countries, speaks to the global disparity in access to health care, including health personnel and other resources. Fistula is almost completely preventable and if it occurs it is treatable. The global capacity to eliminate this scourge exists,

And nobody should be suffering for any length of time.

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Barbara Margolies

“Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’t go into the same room.”

Barbara, a retired New York City elementary school teacher, is the Founder and Executive Director of IOWD. She’s an educator, author, lecturer and photographer who has worked in development projects for more than 25 years.

50-100,000 women worldwide develop obstetric fistula each year, but you don’t seem to hear a lot about it.

I’ll tell you why. Because it’s not pretty. It’s not sexy enough. Once Oprah did something so that was ok, but generally people don’t want to talk about women leaking urine or feces. Women hysterically crying because you can’t help them. What do you do, put that in the newspaper?

There is so much publicity about HIV, tuberculosis, malaria; children with facial deformities and sweet smiles, but there isn’t a lot of publicity about this. So most people don’t know what fistula is about. I certainly didn’t when I first learned of it years ago.

But when they learn of it, they’re shocked.

What is life like when you’re living with this condition?

Have you ever met a woman with fistula? It is absolutely devastating. The smell is so overwhelming some people can’t go into the same room. They’re constantly washing their clothes. When they get undressed for medical exams you will see they’re wearing so many layers, plus plastic wrapped around them.

Some of these women have been living with a fistula for decades, and they’ll go from hospital to hospital looking for help. Some are so isolated they think they’re the only one with this condition. Often their husbands leave them; their friends; even their own children are repulsed. So there’s no physical touching. No one to hug them. No one to talk to.

You are completely alone. And that’s something that if more women in the world understood, then maybe more would pay attention. My God, they would gather, they would fundraise, they would support organizations that provide education and training and safe surgery.

There’s a nursing assistant you worked with in Niger, Mariama – she came to you with a fistula?

She was going to kill herself. She tried twice, but her mother stopped her.

Mariama had an arranged marriage at 15, got pregnant with a baby boy and went into obstructed labour. He died inside her, and she developed a fistula. She lived in the courtyard of a hospital in Niger, and we met her when she was 30.

In the exam room for the first time I saw that someone had given her a colostomy – I don’t know who, I don’t want to know who – and from a hole in her stomach she had a garbage bag. There was feces all over her, the smell was appalling. She was very much alone, and desperate. She wanted to die. Our doctors repaired Mariama and gave her back her life…and I have to tell you – she is one dynamite woman.

One night when we were at the hospital a catheter came out of one of the patients and there was no nurse, no doctor. So Mariama put the young patient in a wheelchair, pushed her all along the broken cement of the hospital grounds to the emergency room, demanding a doctor to re-insert the catheter. And then she put her back in the wheelchair and brought the girl back to the ward and stayed up all night with her.

You can share that story, because Mariama is remarkable. It shows what women can do for other women. Women who have nothing, still helping each other. Women who understand the pain and humiliation of fistula are happy to help their sisters.

Because unfortunately we know that surgery isn’t always safe.

Some of the women have been operated on before; you see what has been done and it’s horrible, it’s cruel, it’s immoral. Sometimes doing surgery is not the right thing to do, and people don’t understand that. You can’t fix every woman with fistula.

That’s why you need education. Fistula can be prevented – so can maternal mortality, child mortality, all the terrible infections… if you have access to antenatal care and safe obstetric surgery at the right time.

But in the meantime we have to counsel these women, tell them we can’t help them. We give them – which is a sad comment – two cloth diapers and waterproof panties that we make ourselves. When the diapers are ruined they’ll use rags, or whatever cloth they have. At least their clothes won’t be wet; at least the urine won’t leak down their legs.

But when women get access to safe fistula repair surgery – I wish the world could see that too. Last visit to Rwanda we held an outreach session for 70 fistula women, under a big tree at the hospital. About 15 had returned from our previous visit, all dry, and I cannot even begin to describe the explosion of emotion that ran through this group.

The women asked questions, expressed their frustration – and their amazement that there were others with the same problem. When the dry women stood up, they clapped, began to sing and then dance. There was hope. It was electric!

It’s all we need to know that we must keep returning to help and teach the local medical staff so that one day they will do theses surgeries on their own.

Tell us why unsafe surgery is our issue.

We take surgery for granted. But it has got to be available to every woman. It’s 2014! It is every woman’s right to have safe surgery offered to them. Women are the strength of every nation – in low-resource countries they carry the heaviest burdens. They deserve to have safe surgery, it must be provided for them. If women throughout the world stand together, we can help make safe surgery a reality for all.

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Dr Angela Davis

“There’s a strong cultural message that somehow having an elective C-section is an ‘easier’ way to give birth.”

Dr Angela Davis is a historian at the University of Warwick, interested in motherhood, parenting and childcare.

Your research has focused primarily on 20th century Britain. Is it possible to talk about universalities of childbirth beyond a particular place or time?

Yes there is universality in the process of birth – but it’s also something which is quite contextually-specific. For women giving birth in the U.K. it’s still a leap into the unknown, the fears are there – but it’s very different to when you’re giving birth in a time or place with a high maternal mortality risk.

Even women giving birth in the U.K. sixty years ago – their mothers’ generation would have had a much more risky experience. They knew those stories, that much more striking association with death which we haven’t really had for he last 40, 50 years.

How have access and attitudes towards Caesarean sections changed since the 1900s?

Small numbers of C-sections were done for hundreds of years but without antibiotics, without blood transfusion, usually resulted in mothers dying. Being able to do a safe C-section was a dramatic improvement and for certain groups of women – for instance those with complicating factors (like rickets, which can deform the pelvis) who were never going to have a good outcome, it was transformative. It allowed them to have a healthy pregnancy and birth.

Rates in the U.K. climbed throughout the second half of the 20th century with a dramatic increase in the last decade, for reasons that aren’t just medical.

When they’re used routinely – perhaps unnecessarily, like as a matter of protocol for a second birth following a C-section delivery – you need to question the evidence-base more closely.

Why do you think this has happened?

Misinformation. Not on a medical level but on a cultural level; the threat of litigation, the influence of the media. There’s a strong cultural message that somehow having an elective C-section is an ‘easier’ way to give birth. When of course the fact is – in this country or any other – it’s major surgery.

If you talk to a woman who has had one the idea that it’s easier – risk of infection, complications with breastfeeding – there’s a gulf between the image and the reality.

Obstetric fistula is a traumatic consequence of obstructed labour – did you come across much discussion of this in your research?

It’s constantly present in women’s stories, but not something that was frequently talked about.

There are many accounts of women living with the legacies of frequent childbirth, but these are the things that really changed after the introduction of the National Health Service (NHS). Suddenly in the 1940s there’s a huge rush of people getting all these conditions they’d been living with for a long time, fixed.

One woman I spoke to had a very difficult experience with fistula. But it was picked up after the birth, she had the surgery and went on to have more children successfully. It was weeks, rather than a lifetime.

Is it helpful to look at the global context?

There are big questions that apply everywhere – the importance placed on reproduction, the resources that are made available, and the relationship between women and the high-level policy decisions that are being made about a women’s issue. Because if it concerned men, the whole thing would be treated very differently everywhere.

And there’s a lot that we can learn from one another – not just taking a ‘western’ approach and applying it on a global scale, but vice versa, seeing what works well in different contexts. Still, you need to be cautious.

Why is that?

There’s an element in the U.K. that goes against women and those who criticize their care. It’s easy to say that if you were in this or that country you’d really have something to be concerned about. When the point is – no one should be in that scenario to begin with.

You need women to be well-informed, empower them to know their bodies, their choices – but you need a system that empowers them as well.

What impact do you think personal storytelling can have in changing opinion and practice?

It’s so important. Most of the effective campaigning groups – AIMS, NCT – started with women sharing their stories. There’s an immediacy that touches people in ways that statistics can’t.

Stories are part of the universal, the global context. We can identify with stories of women giving birth in other places, even if you know the context is different – there’s something about having a child you can identify with. These personal stories are really vital.

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Priscilla

“It’s very complicated to walk away from people. You have to wait for them to walk away first.”

Priscilla is a student in Kenya. She recently underwent fistula repair surgery to correct the damage done by four days of obstructed labour, nine months after she was raped at age 15. 

Priscilla shared her story in The Right To Heal, a documentary examining the personal cost of lack of safe surgical care worldwide. It’s hard to look away from her animated face, and her devastating, statistically ordinary story.

The Right To Heal director and surgeon Jaymie Henry spoke about getting to know Priscilla, and the impact of her story.

What was Priscilla like when you first met her?

Just like in the video! She was so vigorous and joyful and passionate.

Did it change the way you had been thinking about global surgery?

What she suffered was completely inhumane. She was marginalized, cast aside by family, friends, because she didn’t have access to something as simple as surgery for her baby.

It brought that home to me – how we’ve relegated her to someone who can’t even function in society, who didn’t have opportunities.

What happened after the surgery?

It was life-saving; it just completely turned her around. She thought she was dead. Now she’s a vibrant young woman who wants to help other people. She wants to be a nurse, to give back to society.

What next?

Imagine that simple procedure, and it alters the course of her life. It’s profound. For me, there’s a sense of purpose. There are so many Priscillas in the world who can benefit from something as simple as this.

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Dr Michelle White

“It’s powerful to see how generous they are in their love and affection for each other.”

Michelle is Head of Anaesthesia on the MV Africa Mercy, the largest floating hospital NGO in the world. She is currently docked in Congo.

Are women at a disadvantage when it comes to access to surgery in low-resource countries?

Any money usually goes to the men, to the children; women are the neglected person in the family unit, often the poorest of the poor.

But with a lot of women’s health issues – uterine prolapse, obstetric fistula – there really is no other alternative to surgery. So it’s important that they get access to surgical care, that it’s safe – and that it’s effective. Obstetric fistula has a high rate of cure if you get it right first time, dropping dramatically with each further attempt.

Is it hard not to get emotionally involved in these cases?

It’s certainly a very moving surgery to be part of. These women have been ostracized completely from society – very often they’re barred from home, left in an outhouse and someone brings them food. Corrective surgery restores their dignity and their place in society. They can socialize, take a bus, go to market. They can finally get rid of the stench of stale urine.

How do the women respond to this second dramatic change in circumstances?

We try to have a ceremony on the ship for the ladies who have had successful fistula surgery, as a way of showing that they are valued, appreciated. We give them a new dress, symbolizing a new start. There’s applause and dancing – it’s incredibly moving, after the many years of hardship they’ve suffered.

And it’s powerful to see how generous they are in their love and affection for each other. The women who haven’t had successful surgeries nearly always participate. They know how much it means, and their hope of that is so great that they are still willing to rejoice.

What’s the reality for surgery on the mainland, when you leave the ship’s hospital?

It’s not only about access to surgery – people also have to survive their operation, and there are some very practical problems. Many hospitals don’t have access to clean running water or electricity to sterilize the equipment. They don’t have antibiotics, everything disposable is reused.

Everything compromises the safety of surgical care, even the unreliable lighting – it’s very difficult to do a good repair when you can’t really see what you’re doing.

What does this mean for someone with a surgically-treatable condition?

It means they endure with pain, exhaustion, incontinence. For the woman particularly there are economic and social implications – if her husband takes another wife he may reject the infants from the first wife. If she takes the children she may not have the means to look after them.

There’s a lot of social stigma attached to disability, but if we turn a mirror back on ourselves we can see that we take a similar view in the west – we just hide it better.