When I asked my younger brother if he'd help write this article, he responded with “Yes,” and delightfully began to mimic me typing on the computer. My younger brother, ‘I’m Ali and I’m 9 years old’, as he proudly announces, has Downs Syndrome.
But what exactly is Downs Syndrome? Scientifically it is defined as ‘A common birth defect that is usually due to an extra chromosome 21’("Definition of Down syndrome", 2019). It is believed to be caused by a mutation during cell mitosis, whilst in the embryo. So, where we commonly have 23 pairs of chromosomes, those with Downs have 23 pairs and an extra chromosome 21. However, this matter of fact definition fails to capture the remarkable humor, loving nature and joy of a Downs individual.
Week commencing 18th March, was celebrated as the Downs Syndrome Awareness Week with the slogan #LeaveNoOneBehind. The aim of the week is to fight for those with Downs Syndrome to have the same opportunities as everyone else in every aspect of life. To express their support, many have worn odd socks, including David Tennant and the cast of Doctor Who. Odd socks are notably worn on the 21st of March, marking the middle of Downs Syndrome awareness week. This date is chosen as it represents the three (March; 3rd month of the year) copies of chromosome 21 (21st) seen in those with Downs, furthermore odd socks appear to resemble the Karyotype (appearance of chromosomes in the nucleus of a eukaryotic cell) of those with Downs.
There are various myths about Downs Syndrome leading many to believe that those Downs are extremely different from the rest of us. However, everyone has their gifts and flaws, and the only difference is with Downs these gifts are even more unique, gifts that the rest of the population has not yet embraced. Perhaps, in some ways, Downs gives individuals an advantage over the remaining population.
As well as this, the EQ (emotional intelligence) of individuals with Downs is exceptionally high; for example, my brother Ali picks up changes in mood or whether someone is upset, even when others cease to notice and quickly tries to lighten the mood. In this way, he illustrates optimism, resilience and determination, all common admirable Downs personality traits. I have also observed he has a strong memory, being able to recall conversations, directions and episodes of his favourite programmes (Peppa Pig and Ben and Holly’s Little Kingdom) word for word with staggering accuracy, he even goes so far as to imitate the sound effects!
Since 2016 ("Government approves new Down's test", 2016), a new Non-Invasive Prenatal Test (NIPT) has been developed to determine the likelihood of a baby having Downs. This is an optional blood test which became effective in the NHS from 2018. Unfortunately, abortion rates of Downs babies have seen an increase in the UK as a result. Furthermore, it has had negative effects on the acceptance of Downs Syndrome in Iceland; where prenatal tests introduced in the early 2000s, have resulted in an almost 100% abortion rate of Downs children.
In an era where society is urged to be more accepting, it’s upsetting that the stigma around Downs still exists. Moreover, a shocking news headlines emerged following downs syndrome awareness week, “Family denied Kiwi visa because daughter has Downs Syndrome” ("Family denied visa because daughter has Down's syndrome | Metro News", 2019). The British family were planning on moving to New Zealand, the mother, Nilani had been headhunted and the oldest daughter confirmed a place in college. However, Bumikka, 15, who has Downs Syndrome was denied a visa as she didn't have an “acceptable standard of health’ and letting her into the country would risk imposing ‘significant costs’ on medical and education services.” Despite offering to cover costs for supervision in school the decision to decline Bumikka's visa was final. Nilani spoke out on the issue “I’ve always told Bumikka she isn’t any different but this tears it up. She doesn’t completely understand why we’re not going to New Zealand.” It really goes to show that our society still has a way to go in understanding the outstanding capabilities of those with Downs and that the discrimination that still occurs. This emphasises the importance of celebrating Downs Syndrome Awareness week and play our part to combat prejudice and raise the profile of achievements of persons with Downs.
Sadly, Downs children are often underestimated and many individuals, who also have Downs, have gone on to achieve great things, for example:
- Artist Michael Johnson has over 500 pieces of commissioned art and his artwork featured on the cover of American Journal of Public Health ("Famous People with Down Syndrome", 2019)
- John Cronin who started a company titled ‘John's Crazy Socks’ based on his desire to spread happiness into daily lives, he is now named entrepreneur of the year, (Socks, 2019)
- Elliot Rosen, known for playing Craig Moon in EastEnders
Actress Sally Phillips, recognised for playing Shazza in Bridget Jones, amongst many other notable films, has a son, Ollie, who has Downs. In response to the new NIPT tests she created a BBC documentary entitled ‘A world without Downs?’ to voice the amazing positive impact Downs has on society and the loss to us all if there was no Downs. It highlights the perks of Downs and how they outweigh the challenges. It’s a great stimulating documentary so I’d strongly recommend it! What’s important to understand is that every child has their own personality, being Downs is just a minor detail, it doesn't define a child.
I am confident I echo the thoughts of many when I say that our Downs children are possibly the most loving bundles of joy you’ll ever meet, making a valuable impact on our community. Ali has certainly bought nothing but happiness to our family and has taught us more about love, friendship and embracing diversity than any books. He has shown us how to find the happiness in the darkest of moments, wiping our tears with one joyful giggle. This little man teaches me something new every single day and I’m pretty sure he could give Theresa May a few tips on leadership as well. As Sally Phillips has perfectly worded “A Downs syndrome child is a blessing - not a tragedy”.
By Mehr Siddiqui, 12D
Definition of Down syndrome. (2019). Retrieved from https://www.medicinenet.com/script/main/art.asp?articlekey=3112
Government approves new Down's test. (2016). Retrieved from https://www.bbc.co.uk/news/health-37824048
Famous People with Down Syndrome. (2019). Retrieved from https://www.enkiverywell.com/famous-people-with-down-syndrome.html
Socks, J. (2019). John's Crazy Socks - Socks with a Story. Retrieved from https://johnscrazysocks.com/
Family denied visa because daughter has Down's syndrome | Metro News. (2019). Retrieved from https://metro.co.uk/2019/03/26/family-denied-visa-daughter-downs-syndrome-9022812/