Monday, September 23

Interview with Aissa Edon

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Aissa Edon is an FGM specialist midwife and Community Midwife Team Leader at the Hillingdon Hospital Foundation NHS Trust. She is a Mary Seacole Scholar and founder and director of the FGM Hope Clinic, which grew out of her passion to end female genital mutilation. Here she is interviewed by Terri Murray

Congratulations are in order for your having been chosen as a recipient of the Mary Seacole Leadership award. What was the aim of your project? 

It was to understand the needs of survivors of FGM and their partners in terms of psychological and physchosexual support in the NHS system. So it was a service evaluation to hear the voices of the practising community and people who have undergone female genital mutilation and to see how the NHS can improve their services and answer the needs of care.

It’s pretty cool that your project included partners. Is that an unusual way to approach the issue? Is it an angle that has been looked at much before? 

No, it wasn’t really looked at before because FGM is often seen as a women’s issue. I do believe that it is a community issue so that was why I wanted to look at the place of the partner. Also, if you look at the origins of the practice, it was done for men, and most of the time it was by men, so I think we need to go back to the origin of the problem and make sure we include everybody impacted to eradicate the practice and find a solution. I also wanted to understand how FGM can impact them because in my studies, when I did the literature research, there was a little information about the impact on female survivors, but I haven’t seen anything on the how men and partners of FGM survivors are affected.

How effective is the NHS health care management at present, in terms of how it addresses the needs of FGM survivors and their partners? 

The NHS care is not really standardised. So, although there is some good practice in a lot of places, the care is more in terms of physical needs. There are very few places where there is also a psychological or holistic approach and very little in terms of a psychosexual approach, unfortunately. We only have sixteen specialist clinics in the UK, and not always on the NHS. Some are in the private sector. There are ten in London so the rest of the UK has to share only six specialist services. I don’t think that is adequate in terms of care, even if we only limit our understanding of ‘care’ to the physical needs of patients. So it needs to be more holistic and standardised. That was really the aim of my project – to ensure that policy-makers and the health commissioner understand the needs and that the money is in the right place in the NHS to meet them.

When you talk about the lack of a holistic approach it reminds me of something that a lot of FGM survivors I’ve met have said, which is that this is actually a form of child abuse, even if it is culturally acceptable and conventional. So the psychological impact of that is quite traumatic, no?

It is, but I believe that it was already difficult to get to the point where communities and patients (survivors of FGM) could link their physical health issues to the practice of FGM, so even that understanding has taken a very long time to sink in. Also, if you look at the practising communities, talking about the psychological needs or the psychosexual needs is not something very ‘usual’ in these communities, so obviously it is a long process. The impact is still there, and we in the practising communities feel it, but it is difficult to talk about the impact of the trauma. So it is difficult even to just scratch the surface, but I think it is really important that we try because the healing should not only be physical; it should also be for the whole well-being of the person, mental and social as well.

What recommendations did you make as a result of your research?

The recommendations are in different sectors, because they all came from what I was told in the ten focus groups: five with men and five with females. It was their experiences and their recommendations to be fair, not really mine. First of all, they wanted education to be provided to the front-line caregivers, and that means to ensure that it is part of the teaching curriculum for doctors and health care providers. They also talked about the need for education about FGM, so that teachers in schools have this in the curriculum, as well as social services and police. So the first step was education. They were very keen on that.

In terms of care provision, they wanted to have holistic care. That meant that they wanted to have standardised care, to make sure that wherever they live, they will have the same quality of care and a global care. They also wanted to work in partnership with the healthcare provider to make sure it is individual care, so that they have a say in their treatment, a voice and a plan where they have a consultation for their care.  And they want to be seen not just as individuals but also as couples, with couple care so that partners of females who have undergone female genital mutilation could be included.  They also suggested split single-sex groups so that men who have partners with FGM can have workshops or counselling together. And they wanted to have something similar for females.

They also wanted to look at FGM care in a ‘global view’. They understand that in the UK it is an illegal practice and there is a lot of education and prevention, but they feel like it should not stop at the UK border but should be a global thing. They felt there should be the same approach in their countries of origin, where FGM was originally practised. They also expressed a desire for the healthcare professional to go there and not only stick to the UK and do things here.

They also wanted to tell the health commissioner that more money should go into increasing the number of FGM specialist clinics in the UK; sixteen is not adequate for a country the size of the United Kingdom. They believe that all NHS Trusts should have dedicated services to look after people who have suffered the effects of female genital mutilation. There are dedicated services for people with diabetes, for people who have been treated for cancer, so why not for female genital mutilation? That is something they are really querying. These were the recommendations that came to light through the focus groups.

You’ve worked in this area for a long time and gained lots of experience. Were there any big surprises in your research findings?

For me it was really to have the voices of the partners of FGM survivors.  That’s not something I’m used to hearing. I’ve been very touched and shocked also how big the impact of FGM is on these men, and how devastating and harmful FGM is for them. That’s something I didn’t realise before I began this research. That’s something we need to understand because it may be the way we will stop the practice, if we have more men coming forward and fighting against female genital mutilation. It is affecting the women in terms of their physical well-being; it is affecting her obstetric history or sexual history and also her relationship. For men, who are not living the harm of FGM physically, they do feel a very huge impact emotionally and psychologically and that needs to be known. The relationship and sexual intimacy issues FGM causes with their wives was something male respondents talked about a lot.

What insights or advice can you offer to health care professionals who want to be better equipped to handle FGM? 

It’s about having good training and also having a gentle, respectful approach, and a non-judgemental approach. It is also really important to make sure you are treating the patient and the family respectfully.  Knowing what you’re talking about and how to approach things in a sensitive manner, and sometimes we don’t always have the words or attitude to say things, but fortunately the Mary Seacole Awards allowed me to also meet others who are working on the issue. One of the other Mary Seacole Award Scholars, Joanne McEwen, developed an App called Let’s Talk FGM, which teaches healthcare professionals how to talk about FGM in a simple manner. This is a really helpful tool you can download for iPad. It allows patients and professionals to give and receive information about FGM.

What were the biggest challenges along the way when you were working to complete your project?

It has been a really amazing experience.  I wanted to do something meaningful, not just in terms of the Mary Seacole project but something a little bit wider, which is why I did my study in five different Trusts in the UK – to have a little bit bigger, wider picture.  This was sometimes a challenge because it involved a lot of travelling and making sure people were available to talk to me.  But it was all part of the journey.  The challenge was to make sure that people were comfortable and also that their voices were heard. That too can be a challenge, but I will make sure that is the case and I will never give up on that. For me it is not really a challenge but something I do gladly because it is something so close to my heart.

Who have been your biggest inspirations to get you through the difficult times and setbacks?

These women and men who really shared their stories with me, shared their tears with me, their hopes with me – they were my first inspiration. But I’ve also been surrounded in my life by very strong female characters and there were three of them I always thought about during the Mary Seacole Project journey.

First, my grandmother, an amazing lady who had a difficult journey herself and, even with her difficult journey, managed to do amazing things like opening the first mental health care centre for disabled people in Mali back in the 80’s.

The second person that I really looked up to during my journey was Efua Dorkenoo OBE. She was one of the first persons who talked about FGM in the UK and put the issue on the agenda. Unfortunately she passed away a few years ago, which was a big loss for the FGM fight.

The last one was Mary Seacole herself because, even though I never met this lady, I believe that she and I are connected together. I am so proud to carry her name everywhere. She is one of the giants, so I have a lot to do before I will be half of what she was. She would never take ‘no’ for an answer, always going forward. It was amazing especially in her times and with all of the challenges she had, that she still managed to do so much for a community and for health.

All three of my inspirational women have passed away and I know they are looking down, so I want to be sure I make them proud and follow in their steps.Aissa Edon

You’ve worked in this area for a long time and gained lots of experience. Were there any big surprises in your research findings?
For me it was really to have the voices of the partners of FGM survivors.  That’s not something I’m used to hearing. I’ve been very touched and shocked also how big the impact of FGM is on these men, and how devastating and harmful FGM is for them. That’s something I didn’t realise before I began this research. That’s something we need to understand because it may be the way we will stop the practice, if we have more men coming forward and fighting against female genital mutilation. It is affecting the women in terms of their physical well-being; it is affecting her obstetric history or sexual history and also her relationship. For men, who are not living the harm of FGM physically, they do feel a very huge impact emotionally and psychologically and that needs to be known. The relationship and sexual intimacy issues FGM causes with their wives was something male respondents talked about a lot.

What insights or advice can you offer to health care professionals who want to be better equipped to handle FGM? 

It’s about having good training and also having a gentle, respectful approach, and a non-judgemental approach. It is also really important to make sure you are treating the patient and the family respectfully.  Knowing what you’re talking about and how to approach things in a sensitive manner, and sometimes we don’t always have the words or attitude to say things, but fortunately the Mary Seacole Awards allowed me to also meet others who are working on the issue. One of the other Mary Seacole Award Scholars, Joanne McEwen, developed an App called Let’s Talk FGM, which teaches healthcare professionals how to talk about FGM in a simple manner. This is a really helpful tool you can download for iPad. It allows patients and professionals to give and receive information about FGM.

What were the biggest challenges along the way when you were working to complete your project?

It has been a really amazing experience.  I wanted to do something meaningful, not just in terms of the Mary Seacole project but something a little bit wider, which is why I did my study in five different Trusts in the UK – to have a little bit bigger, wider picture.  This was sometimes a challenge because it involved a lot of travelling and making sure people were available to talk to me.  But it was all part of the journey.  The challenge was to make sure that people were comfortable and also that their voices were heard. That too can be a challenge, but I will make sure that is the case and I will never give up on that. For me it is not really a challenge but something I do gladly because it is something so close to my heart.

Who have been your biggest inspirations to get you through the difficult times and setbacks?
These women and men who really shared their stories with me, shared their tears with me, their hopes with me – they were my first inspiration. But I’ve also been surrounded in my life by very strong female characters and there were three of them I always thought about during the Mary Seacole Project journey.

First, my grandmother, an amazing lady who had a difficult journey herself and, even with her difficult journey, managed to do amazing things like opening the first mental health care centre for disabled people in Mali back in the 80’s.

The second person that I really looked up to during my journey was Efua Dorkenoo OBE. She was one of the first persons who talked about FGM in the UK and put the issue on the agenda. Unfortunately she passed away a few years ago, which was a big loss for the FGM fight.

The last one was Mary Seacole herself because, even though I never met this lady, I believe that she and I are connected together. I am so proud to carry her name everywhere. She is one of the giants, so I have a lot to do before I will be half of what she was. She would never take ‘no’ for an answer, always going forward. It was amazing especially in her times and with all of the challenges she had, that she still managed to do so much for a community and for health.

All three of my inspirational women have passed away and I know they are looking down, so I want to be sure I make them proud and follow in their steps.

Aissa Edon

During your many years working to eradicate FGM, what was your most proud moment or achievement?

That’s a difficult question. I think when I will be the most proud is when FGM will be eradicated, so I’m not done yet.  Every milestone… uh, I’m not really a very proud person anyway, but I’m waiting for the end of FGM and I will make sure everything I’m doing until then is for this goal. So, for now, I’ve got nothing to be proud of, yet.

What objectives do you still want to see accomplished to better serve FGM- practising communities here in the UK?

As I said (and here I’m relaying the voices of the participants in my focus groups), I would like to have FGM services in each NHS hospital; that would be a first step. Also, it should be holistic care; it will be the commissioner and policy-makers’ job to ensure that is happening. Yeah, it’s good to talk about safeguarding and prevention and education. It is good also to have a justice system that provides sentencing when appropriate. All of those are good things, but we need to also focus on health and the women who have already been through this harm. We need to understand where they’re coming from and what they don’t want to happen to their little girl. That’s where we can help the next generation: by helping the people who have already suffered the harm of FGM. Ultimately, I’d like to see vaginal reconstruction/restorative surgery offered in the UK free of charge. Currently it is available in other European countries, but not on the NHS here in the UK. This was one of the things respondents requested in terms of a holistic approach.

One of the big problems in combating female genital mutilation seems to be that Western Europeans feel it would be an imposition on other cultures to criticise practices that are non-Western. We can easily be perceived as ‘superior’ or engaged in ‘cultural imperialism’ if we criticise the practice.

I don’t think we need to look at it this way. I prefer to look at it as a human rights violation. We need to recognise it as the cause of health complications and mental health issues, as well as other problems. It is not knocking on peoples’ doors and saying “you’ve done wrong”. It’s looking at the effects. For example, urinary problems or obstetric problems that exist because of female genital mutilation.  Some pregnant women with FGM can’t have a normal vaginal delivery. That’s because of female genital mutilation. The fact that when you have sex it is so painful that you scream your head off: that’s because you had female genital mutilation. That’s fact. That’s not judgemental. It’s not saying that you’ve done wrong. It’s just telling the facts, showing the facts, and nobody can deny facts. Facts are the way to move forward, and by this means people will understand why this practice should be stopped.There is nothing judgemental in facts.

Facts transcend cultural beliefs?

Yes.  I always go by facts. I’m not judging anyone. I’m just looking at the harms that result from FGM, including many medical complications. We can hold on to the culture but there are things that are not helping the culture and FGM is one of them.

What’s next for you in your personal journey?

For me it is about carrying on what I’m doing.  I’d like to do more in a global context, as right now my work is limited to the UK.  I’ve got my charity already but it is very tiny at the moment and because I have a full-time job, I am not able to put as much energy into it as I’d like to. If in the future I can have by midwifery role and my FGM specialist role more linked together – that would be the ideal situation for me. Then too, I still want to make sure that restorative surgery will be offered in the UK. I would like FGM to end in one generation, and if it can be in my generation that will be great. That’s the goal.

Healthcare Professionals: Don’t forget to download the APP: Let’s Talk FGM [NHS]

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Terri (PhD) is an author, blogger, and has taught philosophy and film studies in Secondary and Adult Education for over ten years

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