- Features, News

‘There Is No Word For Down’s Syndrome In My Language’

Elly Kitaly takes her son Chadron swimming in place of the physiotherapy he needs for his Down’s syndrome

When Elly Kitaly gave birth to her son she found out he had Down’s syndrome. She realised that the condition was so ignored in her country, Tanzania, that there was not even an adequate word in her language, Swahili.

This is Elly’s account of her journey to find out why.

Waiting for an internal flight at Dar es Salaam’s airport, a young accountant started making conversation with me.

“Why are you flying to Arusha?” he asked.

I told him I was going to meet a friend I had made on Instagram. She is a mother, like me. Her son is four, like mine, and just like my son Chadron, he has Down’s syndrome.

“What’s Down’s syndrome?” he asked.

This is a question I get often in Tanzania. It doesn’t matter how educated you are, no-one seems to know what it is.

I geared myself up to give my well-practised explanation.

I wanted to switch into our language, Swahili, but I knew I had to keep to English because there isn’t a good-enough word for Down’s syndrome in Swahili.

My language is a reflection of my country – it can sometime feel like Down’s syndrome (DS) doesn’t exist in Tanzania.

Take my fellow passenger at the airport.

I explained to him that there are some common physical signs of DS, like slanted eyes and a flat nose.

He looked blank. So I showed him pictures and he said he hadn’t seen people like this before.

We boarded our flight and the conversation came to an end but it got me thinking.

Looking back, I realised that growing up, I’d never seen a person with DS either. Not at school, not in the market, and not at church.

I was barely aware of the condition until I gave birth to my own son.

I remember frantically Googling it in my hospital bed.

I learnt that the most common form of Down’s syndrome is trisomy 21, trisomy meaning third chromosome. You can think of chromosomes as the instruction manuals for how to build your body. It’s typical to have 23 instruction manuals, each in duplicate, but people with trisomy 21 have an extra, third, copy of manual 21.

Crucially, I learnt that this extra chromosome comes about as a result of random events during the development of the embryo, egg or sperm cells.

If it’s random, it can occur just as much in Tanzania as any other country.

Given that, why hadn’t I, or my new accountant friend, seen anyone with DS in public?

With this question in mind, I arrived in Arusha and met my Instagram friend, Magreth Paschal, for the first time in real life.

Magreth, right, showed me the devestating text message she received about her son Jotham, left

As we sat at her home admiring her plants from her floristry business, she told me the first she had heard of the condition was when her son was diagnosed.

Like me, she hadn’t seen people with DS at all when she was growing up.

She suspected that this was because parents had been shamed into hiding their children.

The reason she held this suspicion was because of something that happened to her when her son Jotham was a baby.

A customer of hers had made a shocking accusation in a text message.

She’d kept the message and read it out loud to me: “Shame on you for going to the witch doctor and sacrificing your son just so that you can get rich.”

I had heard of this idea before because I had been told that people had said similar things about me.

It’s a complicated belief to get your head around.

Some people in Tanzania think that people have DS because their parents have gone to the witch doctor to cast a spell to make themselves rich and have given their own child’s mental capabilities as a sacrifice.

Magreth was incredibly sad that someone would make such an accusation about her.

“After I received the text, I couldn’t even continue to feed the baby. I just cried and cried. It was the worst experience of my life.”

When she went out to the park with her son she started noticing people staring at her.

“Back then I was not comfortable to go out in public with my son because some people looked at me as if I’m a sinful person,” she told me.

She felt people judging her most when she was driving with Jotham in the car – in a town where many people couldn’t ever dream of owning a car in their lifetime.

“That’s when you give them the answer that you have used your son for the money ritual.”

It’s impossible to say how many people with DS are hidden behind closed doors

Sitting across from Magreth, I was filled with anger. I found myself shouting: “I want the world to know that we did not go to the witchdoctor.

“That isn’t how we ended up with children with Down’s syndrome.”

While the accusations made against parents are outrageous, if those parents do give in to the shame and hide their children, the consequences are heartbreaking.

By locking their children away, these parents are denying them the opportunity to socialise and learn.

The condition can lead to smaller stature and a learning disability. But our children with DS do learn, it just takes a bit longer.

Magreth and I have a shared love for videos on social media that prove this.

There was one that blew my mind and I couldn’t wait to to tell her about – US actor and campaigner with DS, Frank Stephens’ speech at congress had gone viral.

Frank Stephens told me the secret behind his success in public speaking was being included in everything by his parents

I had never seen someone with DS speak as eloquently as him before. I got in touch with Frank to ask him what circumstances had led him to be such an accomplished public speaker.

He was clear – it was a result of his parents involving him in everything when he was growing up.

Locking up children isn’t just restricting their opportunities. It can actually create more disabilities.

One physiotherapist, Godfrey Kimathy, told me when he was working in Magreth’s region he found a seven-year-old girl who couldn’t walk or talk or go to the toilet, not because she had DS but because she had been locked up her whole life.

Her parents had locked their daughter up because their neighbours believed they had made her that way in order to become rich.

But Godfrey said he couldn’t even see the wealth that the neighbours were talking about.

Magreth went down a different route – she became defiant against this stigma.

She now takes Jotham everywhere and by doing so she hopes to change her world.

And I want to change my world too by proposing the introduction of a new Swahili term – “Traisomi ishirini na moja” it’s a direct translation of trisomy 21 – that extra chromosome.

Source: BBC

99 thoughts on “‘There Is No Word For Down’s Syndrome In My Language’

  1. I precisely needed to appreciate you all over again. I am not sure what I might have accomplished in the absence of those solutions shared by you regarding that situation. It had been the alarming issue for me, nevertheless noticing this specialized avenue you treated that made me to cry for contentment. I’m just happier for your service and as well , believe you realize what a great job you are always doing educating most people using your web page. More than likely you have never come across all of us.

  2. I needed to write you that bit of word to say thanks once again over the great opinions you’ve discussed on this site. This has been wonderfully open-handed with people like you in giving unreservedly precisely what a few individuals would’ve marketed for an ebook in order to make some cash on their own, primarily given that you might have tried it in the event you decided. The advice also acted to become good way to fully grasp that the rest have a similar keenness like my own to grasp much more concerning this matter. I am certain there are several more fun opportunities ahead for folks who examine your website.

  3. I simply desired to thank you very much again. I’m not certain the things that I would have implemented in the absence of those tips and hints contributed by you over such a subject. This was a hard case in my view, however , being able to see a new professional way you managed that made me to jump over happiness. Extremely happier for this guidance and then hope that you are aware of a powerful job you were undertaking training others using your website. Most likely you’ve never got to know any of us.

  4. I am just writing to make you know what a helpful experience my friend’s daughter obtained checking the blog. She even learned several issues, most notably how it is like to possess an amazing giving nature to make the others completely know precisely chosen problematic issues. You truly exceeded readers’ expectations. Many thanks for supplying these valuable, safe, educational and fun tips on the topic to Janet.

  5. I intended to draft you that little remark so as to thank you again on your wonderful information you’ve documented in this article. It is so extremely open-handed with people like you in giving unreservedly exactly what many of us might have advertised for an e book in making some money on their own, principally since you could have done it if you considered necessary. Those ideas in addition worked to be the easy way to fully grasp many people have a similar interest just like my very own to find out many more concerning this condition. I know there are some more enjoyable opportunities ahead for individuals that looked over your site.

  6. I wanted to write you a very little remark to help say thanks a lot the moment again with the splendid opinions you have shown in this case. It was quite wonderfully generous with people like you to present freely precisely what a number of people could have marketed for an e-book to make some cash for themselves, notably considering that you could possibly have tried it in case you considered necessary. Those ideas additionally worked to be the fantastic way to be certain that most people have a similar zeal just as my own to figure out a good deal more on the subject of this issue. I’m sure there are millions of more fun opportunities in the future for folks who start reading your site.

  7. Thank you so much for providing individuals with an exceptionally memorable opportunity to discover important secrets from this site. It is always so enjoyable plus packed with a great time for me personally and my office acquaintances to search your website on the least thrice weekly to learn the latest items you have got. Not to mention, I am at all times fascinated with your impressive solutions served by you. Some 3 areas in this article are in reality the simplest we have all ever had.

  8. I simply wished to say thanks again. I’m not certain the things I might have accomplished without the actual points documented by you directly on my area of interest. Previously it was a very frightening matter in my position, but observing your skilled mode you resolved it took me to jump with gladness. Now i am thankful for this information and in addition sincerely hope you really know what a powerful job you’re providing training others using your web blog. More than likely you have never met all of us.

  9. I have to voice my affection for your generosity giving support to those people who should have help with this important situation. Your personal commitment to getting the solution across had been definitely advantageous and have always made many people much like me to get to their pursuits. Your warm and friendly useful information implies a great deal a person like me and somewhat more to my fellow workers. Thank you; from each one of us.

  10. I enjoy you because of your whole efforts on this site. Ellie loves getting into investigation and it is obvious why. Most of us notice all regarding the dynamic medium you deliver efficient strategies on your website and as well boost response from the others on that concern while our favorite child has been starting to learn a whole lot. Enjoy the rest of the year. You’re the one doing a fantastic job.

  11. I would like to convey my gratitude for your kindness for men and women who have the need for guidance on your issue. Your special dedication to passing the solution across appeared to be amazingly functional and have in most cases helped those much like me to reach their objectives. Your own helpful guideline indicates much to me and extremely more to my fellow workers. Thank you; from each one of us.

  12. I must express appreciation to this writer for rescuing me from such a dilemma. Right after checking through the search engines and seeing principles that were not beneficial, I was thinking my life was gone. Being alive minus the strategies to the problems you have sorted out by means of the guide is a critical case, and those which may have adversely affected my entire career if I hadn’t discovered your site. Your actual expertise and kindness in maneuvering every aspect was helpful. I don’t know what I would’ve done if I had not come upon such a thing like this. It’s possible to now look forward to my future. Thank you so much for the professional and results-oriented guide. I won’t think twice to suggest your web site to any individual who needs to have direction on this matter.

  13. My wife and i were quite more than happy Chris managed to finish up his analysis through the entire ideas he had out of the web site. It’s not at all simplistic just to always be releasing thoughts which often other folks have been selling. And we also do know we now have the website owner to appreciate for this. The specific explanations you’ve made, the straightforward blog menu, the friendships you will make it easier to create – it is everything sensational, and it’s leading our son and our family feel that the content is interesting, which is extraordinarily pressing. Thanks for the whole lot!

  14. I simply wanted to make a small remark in order to appreciate you for all of the pleasant pointers you are giving here. My considerable internet look up has now been compensated with high-quality suggestions to write about with my companions. I ‘d declare that many of us readers actually are extremely fortunate to be in a perfect place with so many special people with insightful solutions. I feel quite lucky to have encountered your entire website and look forward to many more pleasurable times reading here. Thanks a lot once again for a lot of things.

  15. But a smiling visitor here to share the love (:, btw outstanding design and style. “Better by far you should forget and smile than that you should remember and be sad.” by Christina Georgina Rossetti.

  16. I want to voice my passion for your generosity giving support to individuals that have the need for assistance with this particular theme. Your personal dedication to getting the solution all-around turned out to be exceedingly advantageous and have all the time encouraged professionals just like me to achieve their objectives. The warm and helpful instruction signifies much a person like me and extremely more to my peers. Many thanks; from everyone of us.

  17. My wife and i were really peaceful when Michael could finish up his analysis by way of the ideas he had using your site. It is now and again perplexing to simply choose to be handing out thoughts a number of people have been making money from. So we fully understand we now have the blog owner to be grateful to because of that. Those illustrations you’ve made, the simple website navigation, the friendships your site assist to create – it is everything impressive, and it is letting our son in addition to our family recognize that the idea is excellent, and that’s really indispensable. Thank you for all the pieces!

  18. I wish to show some thanks to the writer for bailing me out of this particular circumstance. After searching through the the net and getting strategies which are not productive, I was thinking my life was gone. Being alive without the presence of answers to the problems you’ve solved as a result of your good site is a serious case, as well as the ones which may have badly affected my entire career if I hadn’t discovered your web blog. Your main training and kindness in dealing with a lot of things was important. I’m not sure what I would have done if I had not encountered such a solution like this. I can at this moment look ahead to my future. Thanks for your time very much for this specialized and results-oriented guide. I will not think twice to refer your blog post to any person who should receive tips on this subject.

  19. I must convey my love for your generosity for those people who need guidance on this one concept. Your very own dedication to getting the solution across became extraordinarily functional and has consistently encouraged employees much like me to achieve their targets. Your amazing warm and helpful useful information signifies a whole lot a person like me and additionally to my office workers. Many thanks; from each one of us.

  20. A lot of thanks for all of the efforts on this web page. My aunt take interest in conducting research and it’s really easy to understand why. My spouse and i notice all about the lively manner you produce practical guidelines by means of this web blog and as well recommend response from others on this subject plus my child has always been being taught a lot. Take pleasure in the rest of the year. You have been performing a terrific job.

  21. Thanks so much for giving everyone an extremely splendid chance to read articles and blog posts from here. It is usually very amazing plus stuffed with amusement for me personally and my office peers to visit the blog at least thrice a week to read through the new tips you will have. Not to mention, we’re usually fascinated considering the mind-boggling tips you give. Selected two points in this article are really the best I have ever had.

  22. I want to express some thanks to the writer just for rescuing me from this instance. Right after looking out through the internet and finding notions which are not productive, I figured my life was gone. Existing without the presence of answers to the issues you’ve fixed by way of your main article is a serious case, and ones which might have negatively affected my career if I had not encountered your blog. Your capability and kindness in playing with all the details was priceless. I don’t know what I would have done if I had not encountered such a solution like this. I’m able to at this moment look ahead to my future. Thanks so much for the skilled and results-oriented help. I won’t hesitate to propose the blog to anyone who should get care on this topic.

  23. I precisely desired to say thanks yet again. I’m not certain what I could possibly have gone through without these ideas shown by you over such a field. Completely was the daunting dilemma in my opinion, however , discovering a professional strategy you treated it made me to weep for contentment. Extremely happy for the service as well as sincerely hope you realize what an amazing job you have been providing training the others by way of a blog. Most likely you’ve never met all of us.

Leave a Reply

Your email address will not be published. Required fields are marked *