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.

 

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                       (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.

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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.

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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.

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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.

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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

Hello from Sierra Leone!

Hello from Sierra Leone!

Sarah Hubbard tells us what’s been going on at Sierra Leone’s National School for the Deaf.

Time has been flying here in West Africa, and work has been progressing. As of now we have painted almost the entire inside of the school! It’s a wonder what a fresh coat of paint can do for a place. We have chosen some bright new colors for the corridors and classrooms and even had some new wooden strips varnished and put up. Check out the before and after shots:

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With just a few more rooms to got we should be done with the interior in a matter of weeks (though the phrase “No hurry in Africa” has never been more true)!  We still have plans for more building renovations, including skylights to brighten up the dark rooms, some new chairs and desks for the classrooms, and  maybe even a paint job for the outside.

We have also been having sign language classes for the teachers, and are doing our best to keep everyone motivated and practicing their sign language. We will continue the classes until I depart in August and, depending on a few factors, they may even be able to continue after that.

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We are also in the process of arranging for three of the teachers in Freetown to travel to Makeni (a three to four hour drive) to attend a certificate course in teaching deaf children. If all goes well, we will continue to send more teachers.

Though the rains are truly setting in here in Freetown, we are doing our best to keep progress moving! The rains are really bad in July and August so we are trying to get the necessary outside renovations done before then.

Thank you again to all who are helping me here in Freetown, back in the States, and especially to Sound Seekers for making it all possible!

Much love from sweet, sweet, Salone.

Kerry’s marathon

Kerry’s marathon

Kerry Downes, an audiologist at St. George’s Hospital NHS Trust in London, ran the London marathon for Sound Seekers and raised over £2,000 in the process. We asked Kerry about all the training, fundraising, and of course the big day itself.

13902925013_d4b8922bf9_bHaving done a half marathon and a few 10 km runs over the years, I’d always wanted to do a full marathon – so when the opportunity came to run the London Marathon for Sound Seekers, I jumped at the chance. My trip to Sierra Leone in November was still fresh in my mind, so I knew just how important every penny raised would be. However the task of raising £2000 in 10 weeks was initially as daunting as the run itself. Working as an audiologist definitely helped as patients and colleagues were particularly interested in the work that Sound Seekers do. While most money came from donations, a cake stall at work and a raffle with prizes donated from local businesses together raised nearly £500. I also emailed the local papers around the area I’d grown up, and they kindly printed articles about my trip to Sierra Leone and fundraising efforts. I was overwhelmed by people’s generosity. Huge donations came in – from colleagues and patients to my tennis coach 20 years ago and even strangers!

Training had its ups and downs. Running after work in January in the cold and rain wasn’t ever going to be fun, and I suffered from the common runner’s injury ITBS syndrome fairly early on – meaning a few weeks off in my already tight 11 week training window. But my distances slowly increased and my knee eventually healed. I’d only managed 17 miles before the big day, I quite simply ran(!) out of time, so was quite nervous about not finishing.

The sun shone beautifully on the day and the supporters were even more amazing than I’d anticipated. My family came down from Yorkshire and many friends in London came along to support me along the route, I even spotted Emily from Sound Seekers at mile 15 thanks to her good set of lungs screaming my name! Miles 20-25 were seriously hard, but the miles crawled by and at last I was turning that corner by Big Ben and heading down the Mall to get my medal.

Whilst fundraising can be daunting, I’m so glad I did it for a cause close to my heart as it made the run all the more meaningful (and something to concentrate on in those moments of pain!). I reached and even exceeded my £2k goal, and will remember the day forever.

Elizabeth and the Kansenshi Basic School in Ndola, Zambia

Elizabeth and the Kansenshi Basic School in Ndola, Zambia

Lucy (Sound Seekers CEO) brings us up to speed on work in Ndola, Zambia

One of the best things about my job is the opportunity to get to know people in the seven countries where we have projects, and being able to enrich these relationships with each visit. The most fun aspect of this is revisiting schools for the deaf, where I can reconnect with children who I haven’t seen for a year or so, and who with any luck remember me and my sign name ‘bell’, which involves miming ringing a bell.

And so it was that in September, I found myself again at the unit for deaf children at Kansenshi Basic School in Ndola, Zambia. The last time I visited Kansenshi was during International Week of the Deaf in September 2012, when Sound Seekers supported a clinic at the school for ear care and hearing aid fitting. We were lucky to have with us a photographer, Emma Case, who took lots of beautiful photos of the children, including the award-winning (not really, but should have been) photo of 7 year old Elizabeth Zimba, below.

Elizabeth looking thoughtful

I’m happy to report that many of the children at Kansenshi appeared to remember me, and my cockles were warmed when Elizabeth greeted me with a big hug! I organised with the head teacher, Mabel, a screening of Emma’s photos from 2012 for all the children. A room full of over-excited deaf children is a very noisy and entertaining place – they found seeing themselves on the big screen absolutely hysterical. I had asked Mabel in advance of the screening to invite Elizabeth’s mother along, firstly because I wanted to give her copies of the beautiful photos of her daughter, and secondly because I wanted to understand more about what life is like for a deaf child in Zambia, and Elizabeth seemed the obvious place to start.

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Cecilia and Francis Zimba have six children, and Elizabeth is number four. Cecilia says that when Elizabeth was about one and a half, she noticed that she wasn’t communicating in the same way that her other children had. Elizabeth also has a very distinctive appearance in that she has blue eyes and some streaks of grey hair. Medical professionals in the UK have seen photos of Elizabeth and conclude that it is highly likely that she has Waardenburg Syndrome, however Cecilia Zimba has never heard of that. To her and the rest of the family, Elizabeth has always simply been deaf and unable to speak, and as a family they have had to learn how to interact with her so that she is not isolated. The efforts the family has gone to (Cecilia has been learning sign language through her church and Elizabeth’s siblings have picked up signs from Elizabeth herself), and the fact that Elizabeth is enrolled at a special unit for deaf children means that Elizabeth is luckier than many other deaf children in Zambia, and sub-Saharan Africa more generally. Many of Elizabeth’s fellow pupils at the unit for deaf children in Ndola are young adults, even though it is a primary school. This is because deaf children in poor countries often start school much later than they should, either because parents don’t understand what is wrong with their child in the first place or because they have subscribed to the commonly held belief that deaf children cannot be educated.

On visiting Elizabeth at home, it is pretty clear that despite being the only deaf member of the family, she is usually at the centre of things. During my short visit, she commandeered my attention by extravagantly showing me around the small family home and making absolutely certain that I had a good look at her various school exercise books by pushing them under my nose. Elizabeth’s family is very poor – as the photos below show. There is no running water in the household, sporadic electricity supply, and Elizabeth shares a bedroom with an older sister and aunt – all sleeping together on some thin mats and blankets that barely separate them from the hard floor. Five years ago, Elizabeth’s father had a stroke, leaving him partially paralysed and limiting his earning capacity; now, the little income that the family has comes from selling chickens and grocery products in their community. When I showed the pictures below during an assembly at Mary Hare School for the Deaf in Newbury, the week after I returned from Zambia, the children’s eyes were as large as saucers.

It is sobering to remember that had Elizabeth been born in UK, her deafness would have been identified at birth and it is highly likely that she would have been fitted with a cochlear implant, maybe even two (like many of the pupils at Mary Hare). As a result, she would have had a good chance of developing speech and language, and her horizons would be significantly broader than they are now.

 

5. Elizabeth's bedroom
6. Family kitchen
7. Washing up
8. Dining room

Despite the difficult conditions that they live in, I was at pains to emphasise to the children at Mary Hare that Elizabeth comes from a happy and loving family, and Cecilia and Francis Zimba are doing their best for all of their children. Their eldest sons, aged 23 and 19, are both still in education and keen to pursue careers in medicine and engineering respectively. Elizabeth is clearly bright and hopefully will continue to do well at school. Since my visit, the Sound Seekers team in Ndola has fitted her with hearing aids. Although these won’t enable her to develop speech overnight, she will be able to pick up more sounds, especially loud sounds. This is not trivial – deaf children are very vulnerable pedestrians, and hearing aids will help Elizabeth hear a large truck approaching from behind when she couldn’t before. They may also help her pick up more sounds when she’s dancing, Elizabeth loves to dance.

9. Elizabeth dancing

Sound Seekers is working with the main hospital in Ndola, Elizabeth’s home town, to establish quality audiology services. This includes training health personnel, providing equipment and organising placements of audiology and ENT professionals to support Zambian staff to upgrade their skills.

 

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