Living with Down Syndrome in Tanzania

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Having a child with Down syndrome in the UK is tough. I don’t mean that life is tough because of the child, I mean because of the constant fight to get them what they need and deserve. Education, therapy, equipment, respect, acceptance…………..the list is endless.

That got me thinking about what life is like for children born with Down syndrome here in Tanzania, the country I have called home for the last 8 years. You don’t see many people here with ds; there are some, but not many. Abortion is illegal here, so where are these children? The truth is hard to hear, as for the majority of the time they are hidden away from society or at worst, abandoned and killed. From what I can see online there are a few organizations trying to make a change and I intend to spend some more time looking into these. However, they are few and far between and it’s going to be a long road.

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We opened our new store in Mweka village recently, at the bottom of Mt Kilimanjaro and we quickly found out that there are in fact 4 adults living there with Down syndrome. They just don’t know that’s what it is! We met the lovely Abuchu as he daily came to the building site to ask for jobs, and he still visits daily now it’s finished. Although he’s usually asking for beer now!!!! We found out recently that he has a sister who also has ds and that up until 4 years ago they were locked away in a room at home and never left the house. He is in his thirties. There is a lot more to that story, but it’s not my story to tell. Abuchu however is a loved member of the community, but it has become very clear that nobody knows what ds is, they just call him crazy. I look at him and wonder what he could have achieved if he had just been given a chance. He’s a funny guy and talks so well, imagine if he hadn’t been locked away for most of his life!

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This is what I’ve come to realize about Down syndrome in Tanzania………

  •       When a child is born here with ds, the hospitals have no idea how to deal with it. There is no training for medical staff and a lot won’t even know what it is. There is no counselling, nowhere to get information, nobody to ask about medical issues often common with ds and nowhere even to get the medical help if it’s needed. I heard a story about a lady giving birth in a local hospital and the staff refusing to touch the baby, believing it was cursed using witchcraft. It is completely heartbreaking to think about.
  • Often when a woman gives birth to a child with ds she is shunned by society. People believe witchcraft is involved and that the mother has been cursed. It is common even for the father to leave a ‘cursed’ child and wife. Along with this, children are often hidden; families are embarrassed and ashamed, locking their children away.
  • Nobody with ds is in employment; there are no plans for independent living and no support in decision making, voting or human rights. There is no provision of formal education,  and even if a child manages to go to primary school, that is where it will end.  Children are then often sent to ill equipped centers to learn ‘skills’, although most will never receive any education at all. Colleges here do not accept people with learning difficulties; if they did it would enable them to learn a real skill, to live a life.
  • There is no data available on the number of people in Tanzania with Down syndrome, nobody has any idea how many exist. It is really hard to highlight the need for support for these people and their families when their life isn’t even acknowledged.

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As awful as this is to read, River really does have a wonderful life living here. He is loved by everyone who meets him and I’ve never had a negative experience. I’m sure that many people don’t realize he has down syndrome, but everyone we know has been told and accept him. In fact, they bloody adore him! I admit that Rivers life is completely different to a local Tanzanian child who is born with ds, we can afford to take him to a great private hospital in Nairobi and send him to a great school where he will be loved. He is a very lucky boy an we never forget that, but I do honestly believe that River being here can show people that their children are wonderful and deserve the same treatment as any other. I only hope that I am right.

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I like to believe that Rivers life is educating people here, that it is part of his journey to show the people he meets that having a disability is ok. To show the community that people with Down syndrome are worthy of love, care and respect and they have something to offer society. That they have the potential to do great things and live wonderful fulfilled lives, if only given a chance. I want people to look at River and see how happy and loved he is and want that for their own children and anyone within their communities.

I believe Rivers place in the world is to show people possibilities!

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11 thoughts on “Living with Down Syndrome in Tanzania

  1. Aichi Kitalyi says:

    Thank You Hayley for your wonderful script on DS in Tanzania. I am a grandma to Chadron who was born 3yrs ago with DS. It was a shock to the whole family. Thank God Chadron was Born in Nairobi where there is more support to parents than in our country. I would love to talk to you more.

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  2. Rhyming with Wine says:

    Oh my goodness Hayley. Every time I read your posts I’m gripped and stunned at how little support and knowledge there is about DS where you live in Tanzania. My heart absolutely goes out to Abuchu and his family, and all those families around the world that haven’t been given the right support and information to help them live their lives full of potential, hope and love as River can. The idea of being shunned or locked away because of DS is just devastating to read. I really admire the fantastic work you do to raise awareness and understanding of DS and I find yours and River’s story so inspirational. Thank you for sharing with #DreamTeam x

    Liked by 1 person

  3. motherhoodtherealdeal says:

    Wow this is such a fascinating but sad post I guess I kind of thought it would be that way but somehow seeing that all on paper really makes me sad. The world has yet a long way to come indeed. Thanks for linking up to #coolmumclub with this important post xoxo

    Liked by 1 person

    • Hayley - I am River says:

      Its really is heartbreaking an it’ll be a long road for change. BUT it wasn’t that long ago that in the Uk people with Ds were put straight into institutions and lived terrible lives. The change has been huge so I really do believe that with a bit of fight, times can change worldwide. I refuse to believe otherwise anyway, it’ll drive me mad! Thanks for commenting x

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    • Hayley - I am River says:

      Thanks very much. Unfortunately it’so hard to change perceptions in Tanzania as they come from years and years of cultural beliefs. There i not enough research, education or medical knowledge here to show people reality. Hopefully, slowly and with time it can be done! Thanks very much x

      Liked by 1 person

  4. Lucy At Home says:

    Gosh I never even it was like that in other countries… I guess I’d never really thought about it before. How sad when there are so many people with DS who are PROVING that they are “normal” and worthy and useful and equal. I am sure River (and the rest of your family) is doing a great job being an ambassador for this and I pray that change comes quickly.

    And congratulations because someone loved this post so much, they added it to the #blogcrush linky! Feel free to collect your “I’ve been Featured” blog badge 🙂 #blogcrush

    Liked by 1 person

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