An interview with work experience student Nuur who spent a week with Sound Seekers

An interview with work experience student Nuur who spent a week with Sound Seekers

lucy_and_nuurNuur, a student at Doncaster College spent a week doing work experience at Sound Seekers. Originally from Somalia and hard of hearing, we interviewed him on his last day with us:

Were you born with hearing loss or did you acquire it when you got older?

Nurr was named ‘person of the day’, which consisted of him wearing a plastic crown and posing for a photo!

As I was growing up my hearing got worse. When I was one, I got an ear infection. After three/four years I couldn’t hear anything. I was 10 years old when I got two hearing aids. My father was doing business in Italy so was able to get me some hearing aids. There was no audiology support in Somalia at that time. When I first got the ear infection, the doctor just gave me injections to relieve the pain.

What support did you have in Somalia/Kenya with your hearing loss?

I had no support in Somalia or Kenya. There were no audiology services out there. The only thing I had was my hearing aids and I didn’t do a lot of socialising.

Tell us what it was like growing up in Somalia/Kenya with hearing loss

Going to school in Somalia was difficult because of the bullying. They called me names, bullied me because of my hearing loss. It was a harsh environment. In school I didn’t wear my hearing aids because of the bullying, I used to hide them. It was difficult because people talked about me, they grouped around me and I felt embarrassed and humiliated.

When the Civil War was happening it was dangerous, a lot of bullets, you didn’t know when you were going to get hit. You didn’t know how to get away from it, you felt like you were stuck. Kenya was better than Somalia, more peaceful.

One day, my family and I were fleeing Somalia. In order to get out the city where we lived, you have to go through roadblocks that were manned by armed groups (militia). Every roadblock is manned by different militia, and each are loyal to different warlords. You could not get through to the next roadblock without paying an exit fee or bribing the militia. We stopped at one of these roadblocks and were singled out, searched and our money and valuables were taken. I was standing right next to my family when I heard someone shouting “who is he talking to”, without realising he was referring to me. I then suddenly felt a heavy impact on my right ear. When I regained consciousness, I found the world in total silence and I had an excruciating pain in my ear. I did not know what had happened, but after we reached a safe place, my family explained to me how one of the militia mistook my hearing aid for a spying device and hit me over the head with the butt of his gun. He assumed I was in contact with rival militia and was ready to execute me over something he had never seen before. My family had to explain to the militia leader that I was deaf and was using a hearing device to help me hear and that I was no threat to them. Since then I spent most of my time hearing nothing, not knowing what was happening around me and in total fear of encountering militias.

Did you know anyone else in Somalia/Kenya with hearing loss?

There were some people who were deaf, children and grown ups. No one had hearing aids. They were amazed that I was wearing hearing aids. The hearing aids helped me although there was a lot of background noise. If it wasn’t for the hearing aids I would struggle to communicate. No one in my family can do sign language, the country didn’t know about it back then, it is a different world now.

When/why did you come to the UK?

I came to the UK when I was 27 to get better hearing support. I didn’t get any hearing support in Somalia or Kenya so my parents thought that my life and health would improve in England. When I first moved to England my eyes opened, it was impressive. It is a different world. I would go back to Kenya to visit my family but I wouldn’t live there again.

What are you doing now?

I am at Doncaster College doing IT and it is helping me obtain some certificate. Doncaster is nice; I have made a few deaf friends but I can only do basic sign language.

What are you hoping to achieve?

To become an IT Technician.

Had you heard of Sound Seekers before you started your work experience?

I had never heard of Sound Seekers. The college told me about it.

Have you enjoyed working here this week?

It has been interesting working here; I have enjoyed it a lot.

What have you enjoyed the most?

It is a friendly environment, there are nice people. Sorting out the hearing aids was interesting, they need a project like that in Africa, especially Somalia.

The making of a blockbuster, Hollywood are you ready?

The making of a blockbuster, Hollywood are you ready?

Lucy tells us about bringing Big Brother winner Sam Evans on board and a fantastic trip to Malawi

Ever since I joined Sound Seekers in 2012, I thought that the charity could benefit from an injection of glitterati. Hearing loss and deafness in sub-Saharan Africa is not the most fashionable of causes, after all. So when I discovered that the 2013 winner of UK Big Brother, Sam Evans, was not only a young deaf man who wore hearing aids, but also had a whiff of Harry Styles about him, I was hot on his trail. And so it was that in January 2014, the Sound Seekers team met Sam in London. We plied him with biscuits and hot drinks and named him our ‘person of the day’, which basically consisted of him wearing a plastic crown and us all posing for a photo (see below).

Photo #1So now that we ‘had’ Sam Evans, what were we going to do with him? Here was a young, popular public figure with hearing loss, who wanted to help us in some way. I know, I thought, let’s make a film! We pencilled ‘make film with Sam Evans in Sierra Leone’ in the diary for November.

As November drew closer, the idea of making a film in Sierra Leone was called into question firstly by the Ebola outbreak and also by the small fact of still not having anyone to actually make the film (other than me and my iPhone). We decided to save the Sierra Leone film for happier times, and to take Sam to Malawi instead. I pressed ahead with finding someone who could make an amazing film for hardly-any-money-at-all.

Step forward Georgie Weedon and David Alexander from Gingerwink Films (https://www.gingerwinkfilms.com/). They fitted the bill perfectly – not only were they professional filmmakers, but they had experience making films in Africa and they liked playing Bananagrams. Malawi, here we come!

Photo #2If you are a keen follower of Sound Seekers, you will have noticed that our activities in Malawi have ramped up a few gears over the past year. We now have an expatriate Audiologist, Dr Courtney Caron, working full time at Queen Elizabeth Central Hospital (‘Queen’s’) in Blantyre. The small audiology team, who have had at most one year’s formal training each, are deriving tremendous benefit from Courtney’s leadership of their department, as of course are the patients. Over the next four years, Sound Seekers will sponsor two Malawians to train in London as the country’s first ever Audiologists (see Lucy’s blog post “Malawian women who will lead their country’s audiology service”), and we will build and equip an audiology clinic at Queen’s. At the end of the project, Malawi will have its first comprehensive, government run audiology service, led by two qualified Malawian Audiologists. This is big news for us, and what we would like to be doing in every country if we had the capacity. No shortage of film fodder then!

A UK Big Brother winner in Malawi was big news. We were inundated with requests for interviews with Sam for newspaper and television pieces. I appeared alongside Sam on Malawi breakfast television, which was a much bigger deal for me than for him, obviously. But I kept my cool and think I managed to come across as not dissimilar to Susanna Reid. We also managed to meet up with some other Big Brother contestants, but this time from Big Brother Africa. Fatima Nkata was a Malawian contestant on Big Brother Africa in 2013 and she positively embraced Sam’s visit and Sound Seekers’ mission in Malawi. She even invited the great and good from Malawi’s media scene to come and meet Sam at an exclusive soiree held at our hotel. Thanks Fatima!

Photo #3
Sam Evans with Sam Banda,
a Malawian journalist who wrote a story about him in The Daily Times
But hang on, weren’t we supposed to be making a film? Ah yes, the film…

We worked Sam pretty hard, but in return believe that he had a very eye-opening, once in a lifetime experience. I think all of us wonder at some point or another how our lives would have turned out if we had been born somewhere very different. In Sam’s case, his experiences in Malawi gave him a more vivid illustration of this than many people are ever exposed to. And of course, selfishly, we are hoping that seven days of ‘realising how lucky I am’ means that Sam will be a powerful ambassador for Sound Seekers’ work in Malawi and beyond for a long time to come.

Photo #4The harsh reality is that if Sam had been born in Malawi, with his level of hearing loss, it’s possible that he never would have gone to school, which would of course have impacted his chances of earning a living and leading an independent life. Firstly, his parents might not have realised that he was deaf, they might have just thought he was stupid or disobedient. Secondly, even if they had realised he was deaf, they might not have known what educational opportunities exist in Malawi for deaf children, or indeed that it was possible to educate a deaf child at all. Thirdly, even if they did know about the small number of schools for deaf children, Sam would not have been guaranteed a place since most of the schools do not accept children over the age of 6, and demand for places far outstrips the number available.

It’s true that Sam could have gone to a mainstream school, however with severe hearing loss and no access to hearing aids or speech language therapy, it is unlikely that he would have survived long in classes of 60-70 pupils in classrooms with poor acoustics. If Sam had not managed to access any schooling at all, it is unlikely he would ever have learnt either to speak properly or to use sign language. It is not an uncommon fate for deaf people in sub-Saharan African to reach adulthood with no way of communicating with those around them, thus leading extremely isolated lives with no opportunity to develop their minds.

Over the course of the week, Sam met many deaf and hearing impaired Malawians, none of whom have had access to the kinds of services that have been available to him in Wales all of his life. Some of those he met have already benefited from Sound Seekers’ work in Malawi, such as Happy, Joyce and Richard. These encounters will feature in the film, which by the way is going to be called ‘Hear in Malawi’ (genius title).

Photo #5

Happy’s story  (left)  is one that we love to tell, and that’s not just because of his cool name. Happy is a little boy with hearing loss who struggled for several years to do well in his mainstream school. In fact he didn’t do well at all; he remained in the same class for three years. Earlier this year, however, Happy was finally fitted with hearing aids at Queen’s, by Courtney and her team. Sam learnt that when Happy returned to school wearing his hearing aids, some of his fellow pupils threw rocks at him or removed the hearing aids from his ears and ran home with them. Courtney and her Audiological Assistant, Mwanaisha, travelled to Happy’s school in Thyolo District and spoke to Happy’s teachers and classmates about how important it is for Happy to wear his hearing aids. Once his peers left him alone, Happy was finally able to concentrate in class and now that he could hear, actually learn something! He has finally moved up a class and on the day we met him, the expression on his face certainly lived up to his name. There are thousands more Happys across Malawi, with the roll-out of our project we hope to be able to help many more of them.

Photo #6
As a nine year old girl and a fifteen year old boy, Joyce and Richard (right)  may not appear to have much in common. Both of them, however, became profoundly deaf very suddenly a few years ago – Richard due to the medication used to treat malaria, and Joyce after she was ill with mumps. Too deaf to benefit from hearing aids, if Joyce and Richard had been in the UK, they would have been eligible for cochlear implant surgery as soon as possible after losing their hearing, in order to give them the best chance of maintaining their speech and their ability to function in a hearing world.
In Malawi, however, no surgeon is trained to do cochlear implant surgery, and even if there were, the cost of the operation and device would be far beyond the reach of Joyce & Richard’s families. So it was a serendipitous mix of being in the right place at the right time, chance meetings and a very generous donation that led to British cochlear implant surgeon, David Strachan, agreeing to implant both Joyce and Richard in October this year. Neither David nor MED-EL (the company which donated the devices) would have agreed to the initiative if they were not satisfied that Joyce and Richard would have access to the necessary rehabilitative support after their devices were switched on. And who was going to provide these services? You guessed it, the Sound Seekers team in Blantyre, alongside our close colleagues and partners at ABC Hearing Clinic, 150 miles away in Lilongwe (Joyce lives closer to Blantyre and Richard to Lilongwe).

Photo #7When Sam met Joyce and Richard at their homes, they were both awaiting the switch-on of their cochlear implants (which will happen by the end of the year), therefore they were not yet benefiting from them. It is going to be fascinating tracking their progress, via Courtney and her team, after the switch-on and as they re-join the hearing world. Just by spending a short time with them, we got a taste of how frustrating their lives must have been over the last few years. Unable to hear their own voices, let alone what other people are saying to them, both of them have almost completely stopped talking.  Because they lost their hearing so rapidly they are not good at lip reading, nor have they had any sign language lessons. While Richard can read and write Chichewa, Joyce lost her hearing at an age when she was only just beginning to gain confidence in reading and writing and therefore writing messages to her is of limited usefulness. In general, life seems to go on over their heads and it is no wonder that both of their mothers reported that they had behavioural problems. One year from now, how different we hope their lives will be.

‘Hear in Malawi’ will feature Sam’s encounters with Happy, Joyce and Richard, and much more besides. There will be laughter, there will be tears, and there will be a big ball of wax which Mwanaisha removed from Sam’s ear. I hope that I have piqued your interest in seeing the film, when it’s finished… Hollywood, are you ready?

  • Sam Evans is raising money for the Sound Seekers ‘Hear in Malawi’ appeal, which will go to establishing Malawi’s first comprehensive, government-led audiology service. We would really appreciate your support – please donate viahttps://www.justgiving.com/Sam-Evans13/ or text EVAN74 £2 / £5 / £10 to 70070. Every pound you give will be matched by the UK Government (via UK Aid), doubling the value of your donation and helping Sound Seekers to change the lives of twice as many deaf people.
  • If you are interested in screening ‘Hear in Malawi’ at your local community centre/school/deaf club, please email help@sound-seekers.org.uk
  • Gingerwink Films launched their education programme during this trip by leading a film workshop for Malawian university students in Lilongwe. You can read more about it here: https://tinyurl.com/kn3or7z
  • To see Sam and Emily’s interview on breakfast TV in Malawi, visit: https://tinyurl.com/lpruq6j

Tales from Tanzania

Tales from Tanzania

Sara Barnes who’s volunteering for Sound Seekers in Tanzania shares her travel stories

As some of you know, I am working with the NGO, Sound Seekers, in Tanzania. Sound Seekers are dedicated to helping people with hearing loss in the developing world in partnership with local organizations. I met Lucy (CEO) and Emily (Programme Manager) at the Coalition for Global Hearing Health conference in Oxford last July. I was impressed by their commitment to facilitate relationships with professionals in the community and work toward long-term and ethical goals.

Currently, I am working at two places, Buguruni School for the Deaf and Amana hospital. Buguruni, which is run by the Tanzanian Society for the Deaf, has about 300 “deaf” students (students with varying degrees of hearing loss), some of which live at the school. The students communicate primarily by sign language, but the goal is to use total communication (signing and speech). Unfortunately, my small knowledge of American Sign Language is not useful, as sign language is different in every country. My primary goals at the school are to educate the teachers and staff about hearing loss and hearing aid use and update the students’ hearing tests and hearing aid information. I am working with a fantastic Tanzanian audiologist, Mr. Shibanda, who was working as a teacher at the school, then fund raised to put himself through audiology school in England. He also works with people from the community to help with ear issues, like impacted ear wax, and hearing tests. As far as I know, he is one of the few audiologists in Tanzania.

Amana Hospital is a regional hospital that serves the Ilala area of Dar es Salaam. Currently, I am working on training physicians that are interested in basic ear care in the hopes of eventually starting an ear and hearing clinic. The hospital is sorely lacking resources. In the whole hospital, which has several departments, there is not a single otoscope, the light and magnifier used to look into patients’ ears. The doctors have to refer to the Ear, Nose, and Throat Department at the National hospital (30 minutes to 2 hours away, depending on traffic) for simple problems such as “swimmer’s ear.”

The people I have been working with at Amana and Buguruni have been enthusiastic and passionate about ears, like me! However, things in Tanzania seem to operate more slowly and can be frustrating. For example, the electricity in the audiology office at Buguruni stopped working on October 21 after some routine maintenance was completed by the Indian Navy. The last week has been spent having various maintenance men inspect the problem and at this point, we are waiting on the power company. It is nearly impossible to complete work at the school since the audiology office is the only place quiet enough to perform hearing tests. On the bright side, I have had time to compile some educational material for the teachers about the importance of the students wearing hearing aids, which is a rarity at the school and arguably, a bigger problem.

At Amana, my main difficulty is getting all the doctors together at the same time. Each doctor has their own schedule. Even if they agree to meet at a certain time, their schedules can change, which has left me waiting at training by myself more than once. We are working on a new schedule to keep this from happening, but again, everything moves a little slower in Africa. Although I focused on the difficulties I am having, I want to stress that this is how things usually go in Tanzania. I did not expect to come into smooth sailing, and honestly, the setbacks, though infuriating, are part of the experience and a reflection of what the dedicated professionals who are from here also encounter. With my time, I am making small steps forward most days and expanding my knowledge as an audiologist, a trainer, and traveler.

Thank you to Sara for allowing us to use this post from her travel blog http://www.shortandtalltales.com/

Sara Barnes reports from Tanzania

Sara Barnes reports from Tanzania

As some of you know, I am working with the NGO, Sound Seekers, in Tanzania. Sound Seekers are dedicated to helping people with hearing loss in the developing world in partnership with local organizations. I met Lucy (CEO) and Emily (Programme Manager) at the Coalition for Global Hearing Health conference in Oxford last July. I was impressed by their commitment to facilitate relationships with professionals in the community and work toward long-term and ethical goals.

Currently, I am working at two places, Buguruni School for the Deaf and Amana hospital. Buguruni, which is run by the Tanzanian Society for the Deaf, has about 300 “deaf” students (students with varying degrees of hearing loss), some of which live at the school. The students communicate primarily by sign language, but the goal is to use total communication (signing and speech). Unfortunately, my small knowledge of American Sign Language is not useful, as sign language is different in every country. My primary goals at the school are to educate the teachers and staff about hearing loss and hearing aid use and update the students’ hearing tests and hearing aid information. I am working with a fantastic Tanzanian audiologist, Mr. Shibanda, who was working as a teacher at the school, then fund raised to put himself through audiology school in England. He also works with people from the community to help with ear issues, like impacted ear wax, and hearing tests. As far as I know, he is one of the few audiologists in Tanzania.

Amana Hospital is a regional hospital that serves the Ilala area of Dar es Salaam. Currently, I am working on training physicians that are interested in basic ear care in the hopes of eventually starting an ear and hearing clinic. The hospital is sorely lacking resources. In the whole hospital, which has several departments, there is not a single otoscope, the light and magnifier used to look into patients’ ears. The doctors have to refer to the Ear, Nose, and Throat Department at the National hospital (30 minutes to 2 hours away, depending on traffic) for simple problems such as “swimmer’s ear.”

The people I have been working with at Amana and Buguruni have been enthusiastic and passionate about ears, like me! However, things in Tanzania seem to operate more slowly and can be frustrating. For example, the electricity in the audiology office at Buguruni stopped working on October 21 after some routine maintenance was completed by the Indian Navy. The last week has been spent having various maintenance men inspect the problem and at this point, we are waiting on the power company. It is nearly impossible to complete work at the school since the audiology office is the only place quiet enough to perform hearing tests. On the bright side, I have had time to compile some educational material for the teachers about the importance of the students wearing hearing aids, which is a rarity at the school and arguably, a bigger problem.

At Amana, my main difficulty is getting all the doctors together at the same time. Each doctor has their own schedule. Even if they agree to meet at a certain time, their schedules can change, which has left me waiting at training by myself more than once. We are working on a new schedule to keep this from happening, but again, everything moves a little slower in Africa. Although I focused on the difficulties I am having, I want to stress that this is how things usually go in Tanzania. I did not expect to come into smooth sailing, and honestly, the setbacks, though infuriating, are part of the experience and a reflection of what the dedicated professionals who are from here also encounter. With my time, I am making small steps forward most days and expanding my knowledge as an audiologist, a trainer, and traveler.

Thank you to Sara for allowing us to use this post from her travel blog http://www.shortandtalltales.com/

Malawian women who will lead their country’s audiology service

Lucy (former Chief Executive) focusses on some of Sound Seekers inspiring women.

Sound Seekers women are making the world better for people with hearing loss.  In HQ, the Chair and Vice-Chair are inspiring, successful professional women.  Our accountant is a woman.  Our CEO, programme manager and programme assistant are all women.  We’ve even managed to persuade our auditors to stop sending us letters that start “Dear Sirs”. And at the moment, we have two female audiologists giving up months of their lives to set up or improve services by providing shoulder-to-shoulder training to healthcare professionals in Tanzania, Zambia and Cameroon. Our collaborative working styles and mutual support have enabled us to transform Sound Seekers in the last two years.

But the real success story, that I want to shout about, is our African women in the field.  Shannon Kruyt, our consultant audiologist in South Africa, only works for us one day a week. And yet in that time, she’s pulled together a tele-audiology project between Cape Town and Zambia, and has performed the first remote hearing-aid fitting in sub-Saharan Africa. This brings hope to hundreds of people who are “difficult” cases; they will no longer have to travel vast distances or wait months for help from someone more experienced.  The audiology technician in Zambia, Olipa, who actually screamed with joy when she heard that Emily, our programme manager, was moving to Lusaka.  Rephah, the only audiology officer in her hospital in Cameroon, calmly running a whole audiology clinic on her own, never complaining of being lonely or things being too hard.  Yaka, in Gambia, desperate to improve her skills so that she can give even better care to children.  Monica in Sierra Leone, who isn’t actually African but might as well be, as she spends more time there than in the UK – utterly dedicated and running the only audiology service in the whole country.  For free.

 

Shannon doing tele audiology (1024x833)
                       (above)  Shannon in a live tele-audioogy session
And it’s Malawi where the women are starting to shine the most.  Go, ladies. You probably already know that we’ve launched one of our most exciting projects ever in this country. Working with the Queen Elizabeth Public Hospital there, we will deliver a comprehensive audiology service for Southern Malawi. For people living here at the moment with hearing loss, they would have to drive the equivalent of Portsmouth to Glasgow to try to get an audiology appointment.  We are going to build a clinic and provide all the equipment needed for an audiological service.   So far, so good.  But Africa is littered with crumbling buildings and broken, dusty, unused donated equipment.  I’ve seen it piled up in hot crowded rooms, taking up space, a gloomy monument to thoughtless giving – but no-one feels empowered to throw it away.  Why will we be different?

Well.

Because of three extraordinary women.

Courtney in scrubs 1 first cochlear implant in Malawi
Dr Courtney Caron, (in scrubs for the first cochlear implant in Malawi, right), an American audiologist working for us for only basic living expenses for four years. Although those basic living expenses do seem to include occasional mango daiquiris by the pool as well as mouse kebabs, so I might have to review them. Downwards. Anyway, she is there now, setting up the service pretty much from scratch, and building the capacity of the clinical officer team.

Mwanaisha Phiri and Alinane Mtonya, currently audiology technicians, who we are going to sponsor through a MSc in audiology in the UK. Courtney will then supervise their 18 month clinical practice when they return to Malawi. Making them not only Malawi’s first fully qualified Malawian audiologists, but the first female home-grown audiologists in Malawi – and in sub-Saharan Africa – who will lead an audiology service for their country.

Mwanaisha and Alinane are talented, driven and really, really care. No-one deserves this break more than they do.  And one of my happiest memories of Malawi ever is of Mwanaisha, (below) usually quite shy and reserved, suddenly busting out a storming poetry performance at the launch of the audiology project in Blantyre in June.  It was virtually a rap. It was a revelation.

SONY DSC
The first three years of this project should see Courtney, Mwanaisha, Alinane and the team treating ten thousand children and adults. That’s a lot of lives changed.  A lot of children being able to stay in school. A lot of adults being able to stay in work.   We hope that the Blantyre Belles are proud.

I just checked my last blog and found some promises to talk about:

1) the British Army brass and wind band playing a concert to launch the Malawi project

2) signing the MOU (woo hoo!)

3) failing to notice being chatted up at Chez Maky

4) Wakisa’s new baby

5) and being freezing yet again while everyone in the UK sweltered in the June heat wave

So here we go.

SONY DSC
The Army Band were fantastic!

British Army. These guys rocked.  There was a marching band through the hospital, with a Pied Piper trail of patients, visitors, children of patients, children of visitors…probably other relatives of all these groups too. Thank you, Colonel Barry.

Signing the MOU. I LOVE  a signing! It makes me feel important and validated.  We were particularly excited about this one, because it really was jointly negotiated, with compromises on both sides.  It didn’t feel like the donor just handing over pages of legalese and the other partner boredly stamping the document.

Failing to notice being chatted up. Oh dear oh dear. Picture the scene.

Me, sitting there quietly working (9pm. Note dedication).

Fairly attractive man from the United Nation: “Would you like this glass of wine?”

Me, utterly mystified: “oh, is it left over?”

Him: “No, I am buying you a drink”.

I must learn some social graces.

Lupa 1
Lovely little baby Lupa

Wakisa’s baby.  All I can say is aaaaaaah. Little Lupa is gorgeous.

Being freezing in Africa again. Do you remember how hot mid-June was? I was wearing jeans, knee-length socks, trainers, three jumpers and huddled over a fire pit with a slightly runny cold nose like a puppy. Just saying.

Also in my last blog, I explained that no mice were hurt in its making. I am a little worried that some feelings might have been hurt in the making of this one.   So, I should say that although Sound Seekers is driven by women, we have some great men.  Dr Roger Green, our technical adviser for the Malawi project,  who is meant to be peacefully retired but has virtually turned into an unpaid employee and audiology lecturer. Some great Board and Projects Committee members.  And poor Stuart, our wonderful operations manager,  who puts up with me ranting on and on about “centuries of oppression by men of women” and just carries on quietly being rather marvellous and making my work possible.

Thanks, chaps.

But mainly, today  –  thanks to the women.

Tanzanian Me

Tanzanian Me

Lucy blogs from Africa and reflects on how being deaf in the UK is rather different to being deaf in Africa.

I almost missed my plane to Kenya yesterday because of my hearing. The departures board in Dar Es Salaam airport had directed me to gate 5, where I sat reading my Kindle. Every so often a group of people would depart through gate 5, and each time I would join them, only to be told it wasn’t my flight. So I sat down again, and resumed reading. Quite by chance, a passing airport official spotted my boarding card and looked alarmed, telling me that the gate had changed, that there had been announcements on the PA system – announcements I clearly hadn’t heard (or hadn’t heard properly). She charged through the airport with me trotting along behind and I made the flight. Just.

This kind of thing doesn’t happen to me often, luckily. But when it does, I remember how fortunate I am. I wear digital hearing aids in both ears, provided free of charge by the NHS. Fortunately for me, NHS hearing aids don’t have the same reputation as their glasses – mine are small and silver and I wear them with pride.

If I was the same age that I am now, 33, and if I happened to be Tanzanian instead of British, it’s highly unlikely that I would be wearing hearing aids; I might not even know what hearing aids are. Every day I would miss out on conversations, I would be left out of important decisions, I would miss jokes. If I was poor, which the majority of Tanzanians are, then after the sun sets I would likely be without electricity, which would make communication even harder. By now, and I have been wearing hearing aids for five years, the Tanzanian me would be in a worse position for finding work and I almost certainly would have shrunken into myself somewhat.

The same would apply if I were from anyone of the countries which I am visiting during my current tour with Sound Seekers, meeting our partners on the ground and reviewing our project progress. So far I have visited Zambia and Tanzania. In Zambia, there is only one fully qualified Audiologist for the entire country of 13 million people! To put this in perspective, in the UK, we have around four Audiologists for every 100,000 people. That is why equipping health staff with skills in Audiology is a key part of our efforts. I’m looking forward to seeing these efforts in motion later this month when I visit three individuals (from Malawi, Cameroon and Zambia) whom we are sponsoring to do a one year diploma in Clinical Audiology at the University of Nairobi.

 

The Katambo Family, Malawi

The Katambo Family, Malawi

Nasreen Hussain and Amman Gill, audiologists based in London and recent Seekers volunteers in Malawi, share the story of The Katambo Family 

In the United Kingdom when a child is born deaf, perhaps as a result of an inherited condition, we have the luxury of genetic counselling. Genetic counselling is conducted by healthcare professionals who have been specially trained to provide advice about genetic conditions. Parents can be made aware of, and prepare for, the risks to themselves and their children. We had always taken for granted the value of genetic counselling until we met the Katambo family on an outreach clinic in the dusty village of Mwangala in Lilongwe, Malawi.

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We first met Mrs Lenia Katambo accompanied by her husband: Mr Duwaluwa Katambo. It was clear from the outset that Lenia struggled to hear as she was unable to answer most of our questions. Mr Katambo therefore explained most of wife’s history. Lenia was said to have been born with normal hearing and has a family history of hearing loss (two brothers that are believed to be deaf). Lenia has five children, three of whom she reported cannot hear. A hearing test revealed Lenia has a severe-to-profound hearing loss in both ears. Having said goodbye to Lenia we were not expecting to meet her husband and children later that day.

A couple of hours had passed before we had the pleasure of meeting Mr and Mrs Katambo’s daughters. Mr Katambo was very keen and happy to introduce us to his daughters. Elesi greeted us with a coy smile but Sara was shy and clung onto her mother. Mr Katambo told us that Sara had no speech at all and Elesi had very little. It was for this reason that we took the girls’ history from their father. They are both thought to have a bilateral hearing loss since birth. The girls lip read and their family have devised their own sign language to communicate. Sara is fifteen and Elesi is fourteen years old. However, whilst observing the girls we noticed that Sara displayed a younger level of maturity than Elesi.

Looking into Elesi’s ears and testing her middle ear system was achieved within a few minutes as she understood to sit still. Sara however, kept fidgeting and it soon became clear she was not entirely comfortable with contact from strangers. We took the girls and Mr Katambo to our audio booth trailer in order to conduct hearing tests. The girls sat in separate soundproof booths and were required to wear headphones through which they would hear beep sounds. We needed the girls to press a button every time they heard a sound – no matter how quiet.  We had a chain of communication: we gave instructions for the hearing test in English which were translated into Chichewa for Mr Katambo by our Malawian colleagues. Mr Katambo then relayed the instructions to the girls through demonstration and sign language.

After repeated instruction Elesi was able to provide us with some responses during the hearing test. Similarly to her mother, she has a severe-to-profound hearing loss in both ears. We did not have the same luck with her sister Sara. We took many different approaches in attempting to obtain results from Sara and ultimately had to abandon testing as she became upset and showed signs of distress. Hearing tests require extensive concentration and sound proof booths can often feel confined even to those of us that are not claustrophobic. Thus she was taken to our HARK vehicle for a break and an automatic hearing test that does not require responses from the patient was attempted. However, the test does require the patient to sit very still which Sara was unable to do.

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We had similar difficulties a while later when Mr Katambo returned, this time accompanied by his 10 year old son Aaron. Like Sara, Aaron did not respond during the hearing test. Although we were unable to obtain a complete picture of Sara and Aaron’s hearing that day, testing can be reattempted when the ABC audiology team visit again in a few months. At this future outreach clinic, Lenia and Elesi will be fitted with hearing aids and custom made ear moulds for which we took impressions. This is not possible at the moment for Sara or Aaron as hearing aids cannot be fitted without important information from a hearing test.

Lenia and her family had never had their hearing tested before. We were privileged to have been part of their first experience of audiology and hope it will not be their last. It is likely that Lenia, Elesi, Sara and Aaron share a genetic mutation causing their hearing loss. It is unlikely that genetic counselling will be available in such rural villages of Malawi in the near future. The Katambo family is just one example of many that could benefit from genetic counselling and that will come from continuing the advancement of audiology services in the developing world. At present, audiologists are able to provide much needed support to deaf families by the way of medical care, hearing aids and raising Deaf awareness. We hope Lenia and Elesi will get on well with their new hearing aids and that progress can be made with Sara and Aaron.

This case study was written by Nasreen Hussain and Amman Gill, audiologists based in London, during their recent Sound Seekers volunteer placement in Malawi with our partner ABC Hearing Clinic and Training Centre.  

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Comprehensive Audiology in Malawi

Comprehensive Audiology in Malawi

Lucy (Sound Seekers CEO) reports back on a recent packed trip to Malawi.

This was my favourite ever Africa trip, I think – possibly even better than when I went on safari in Tanzania (paid for by my dear mother, as I was only a volunteer then, despite my advanced years).  Looking at my trip report afterwards, I can see that it was packed with work, but it almost felt like a holiday because it was so much fun.

Malawi has become our flagship project; we are launching a comprehensive audiology service in Blantyre (Southern Malawi) which will be led by Malawians in two years, under the supervision of a wonderful American audiologist, Dr Courtney Caron. We are going to train two committed and inspiring Malawian women to be audiologists – the first ever Malawian audiologists – and we will also build a fully equipped audiology clinic.  It will help many thousands of adults and children: supporting adults to get and stay in jobs and children to be able to get to and stay in school.  We are very excited about it.

I travelled with our new Chair, Denise. It was such a treat to have a companion on the journey, especially one with a separate – and very full – bag of snacks. Our first day in-country wasn’t really that high-achieving: although Denise is youthful, I am beginning to feel my age and now need to sleep after long, uncomfortable flights with horrible Ethiopian Airlines food rather than bouncing into meetings. And on that topic,  I’ll need a separate post to convey my full loathing of Ethiopian Airlines; I just need to get over my temper first.  Lilongwe was beautiful as always: we went there first to catch up with our partners at the African Bible College campus.  Pete and Rebecca Bartlett have created a clinic here, staffed by a crack team of Malawians, and it’s the happy home of a Sound Seekers mobile clinic.

Dr Courtney CaronWe were super-excited to finally meet Dr Courtney Caron, the American audiologist mentioned earlier: (pictured left in action at the clinic) she was spending a month with Hearing For Humanity, starting in Lilongwe, before beginning her three years with us.  If we had had any fears about recruiting someone over the phone; they disappeared immediately: Courtney is an absolute star. In fact, I am thinking of going part-time and letting her do most of my job too. We saw her in action with tiny babies, gently testing hearing, and reassuring mothers – and we had serious talks with her about the scale of the challenge of moving to Malawi, managing multiple levels of officialdom, and setting up a whole audiology service. I felt a warm rush of relief at the end of our main meeting, when I said “So, basically, you’ll just create and run an audiology service, yes?” and Courtney just nodded and said “yes, that should be fine”.  I’ll check in on her three years later to make sure everything’s done to a high standard. That’s what I call good, light-touch programme management.

Denise and I had a very positive chat with one of the senior officials in the Ministry of Health; (outside the Ministry below) he was friendly and warm and extremely chilled about us just wandering in because he hadn’t written the meeting down, and had forgotten about it. We’ve worked so hard to really co-design this project with Malawian people, and it felt like he knew this and wanted to make sure it was a success.

 

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The only bad thing about the Lilongwe leg was increasing my list of “Children Who Look Terrified Of Me And Try To Run Away”. Here’s the best one: a gorgeous little baby. His mother wanted me to hold him but he had other ideas.  You can see how hard he is trying to get away.  His entire strength went into his little arms and legs trying to push off and launch himself absolutely anywhere other than where he was.
Lucy with a reluctant baby.
Lucy with a reluctant baby.

Then to Blantyre, starting at early o’clock on the 7am coach on the Sunday morning. By then, Denise’s and my heads were swollen from being introduced so many times in Lilongwe as the Chair and CEO of Sound Seekers. We were quickly deflated by finding out, arriving at the coach station, that there was no red carpet and no uniformed flunky to greet us. Instead, I had a text from our hotel just casually saying that they’d double booked and there was no room for us. Thanks for nothing, Kabula Lodge!!! I still haven’t got round to my Trip Advisor review, but it won’t be kind.  We sat forlornly on a wall with our suitcases, plotting what to do. Hurray for building great relationships in Malawi, though, because Dr Wakisa immediately recommended Chez Maky, a lodge run by his friend. And then Mwanaisha, one of the Malawian nurses who’ll we sponsor for training, came to rescue us and take us there. We had a gorgeous little cottage to ourselves, peacefully guarded by just a few small but terrifyingly poisonous spiders. I didn’t mind them at first, but Denise looked worried. Denise is Australian and keeps fully grown crocodiles as pets, and if she’s scared of a spider, so am I.

The next post will feature the triple excitement of the British Army brass and wind band playing a concert to launch the Malawi project, signing the MOU (woo hoo!) and my failing to notice being chatted up at Chez Maky. Oh, and Wakisa’s new baby. And being freezing yet again while everyone in the UK sweltered in the June heatwave.

No mice were harmed in the making of this blog. Yet again, it wasn’t mouse-kebab season. But our taxi driver did give us his view on the perfect mousey snack: “the legs should snap like spaghetti”.  Actually, he said “Spaghett” (losing the final “i” is quite normal in East Africa). I thought he said “baguette”. It took quite a long time to clear that up.

BBC Radio 4 appeal

BBC Radio 4 appeal

On Sunday 8th July 2014 Sound Seekers is the subject of a Radio 4 appeal, voiced by the One Foot In The Grave actress Annette Crosbie. This is a wonderful opportunity for us to spread the word about Sound Seekers work and we would really appreciate it if you could encourage people to listen in and hear about our work. A link to the appeal will be posted on Sound Seekers website and social media pages for 7 days after the broadcast so that we can get as many people to listen as possible.

download here

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