Written by Danise Grant, Diversity, Inclusion and Education Consultant
Entering the world of disability through the gateway of Down syndrome can be one of the most wonderful things that could ever happen to a person. There is often so much emphasis on the medical and educational complexities of a person with Down syndrome (medically known as Trisomy 21), that has led to a host of assumptions and stereotypes that are not true.
Scientifically, a person who has Down syndrome is one with a chromosomal difference. We are all meant to have 46 chromosomes, 23 from one parent and 23 from the other. So, when the extra one pops up, purely by chance, the subsequent baby that is born will have Down syndrome. During pregnancy, families are often told that when born, their baby may have extensive physical and/or mental abnormalities and the road ahead of them will be paved with trips to the hospital, lifelong care and a high level of dependency. Sadly, this prognosis results in 90% of babies diagnosed with Down syndrome before birth in the UK, being terminated.
But for some, this prognosis could not be further from the truth.
The “Lucky Few” crew – challenging the perceptions of Down syndrome in the community and social media
If you have never encountered a person with Down syndrome, then you are missing out. As a community they regard themselves as the “Lucky Few” [1]. There are approximately 3000-5000 babies born globally per year with the condition [2]. Despite the negative connotations associated with Down syndrome, there are many people whose lives have been touched by knowing someone with the condition; and as such have set out to challenge and forge a positive perception of Down syndrome in the media, and in real life. Here we take a look at two examples of amazing people whose lives have been changed positively by Down syndrome.
Nicola Enoch – Founder – PADS – Positive About Down syndrome
Nicola Enoch is a “mum on a mission” [3]. Already mother to Emily, in 2004 she gave birth to her son Tom. Although it is possible to test whether a baby has Down syndrome, many parents, like Nicola, despite the pressures from medical professionals decided not to, as this is a high-risk procedure.
Upon Tom’s birth Nicola was told that there were concerns for her baby and she was asked if he “looked normal” [4]. Initially, Nicola was devastated to learn that Tom had Down syndrome. She struggled with what having a baby with Down syndrome would mean and how it would impact their lives. It took time for Nicola to come to terms with Tom’s diagnosis. She says this was due to the lack of positive knowledge or information available to her as a new mum and the prejudicial and discriminatory behaviours that society acceptingly displays to those with disabilities. This made it hard for her to perceive having a child with Down syndrome as a positive.
Often those who have a baby with Down syndrome are left to navigate the world of hospitals, local authorities, social services, government departments and education on their own. Nicola realised this void and while Tom was still a baby, she set up a local support group called The Ups of Downs in Warwickshire, England. Nicola sent out to support expecting mothers, attempting to change the narrative of information often given by maternity services by providing positive information for those who were having or recently had a child with Down syndrome. Out of this PADS – Positive About Down syndrome was born. This is an online place of paradise with links to support groups and positive stories from young people with Down syndrome, parents of children with Down syndrome, their families and friends. The groups aim is to offer a realistic insight into life living with Down syndrome, and it inspired the publication of her book Nobody Told Me: the truth about Down syndrome.
Nicola is changing the way many think about Down syndrome and her work is award-winning. She was recognised as Star Mum of the Year in Hello Magazine’s Inspiration Awards 2021 and she has played a key role in influencing society to fully include and value those with Down syndrome.
Nicole Perkins – Education Professional and Photographer
Nicole Perkins is a young Special Educational Needs Teaching Assistant by day, but in her spare time she champions all things Down syndrome through her fabulous photo shoots and inspirational campaigns. Her aim is to eliminate the societal negativity surrounding Down syndrome and to spread positive awareness, whilst removing stereotypes, through her campaigns. The most famous has been her “Down with Disney” which went viral. Nicole uses her platform to change the negative perceptions of people with Down syndrome, championing the beauty of difference and celebrating individuals with the condition. This has been continued in her most recent social media campaign ‘I see me when I look at you.’
Should disability just be seen as diverse ability?
There is a lot of discrimination in society and education when it comes to disabled people. We need to remember all children, including those with Down syndrome, as able to do, accomplish and achieve as we would hope and expect from any child. We need to see their potential and their abilities rather than their disabilities.
Do people with Down syndrome have some struggles? Yes, but don’t we all? It may take a little bit of time for them to accomplish things, but that is true for many children. No child is the same – we all have different requirements, strengths, and needs. What is important is to not make judgements and assumptions, but instead treat those with Down syndrome as we would those who do not have the condition, and coupled with that, we respect their difference by keeping it positive.
If we are uncertain about difference, we should simply endeavour to educate ourselves and those around us, including our young people, about that difference, so we gain understanding. It is important to see beyond Down syndrome in each person affected. They have great ability to speak and sign (something many typical people cannot do), often attending mainstream education, living alone, getting married, having children, holding down jobs and even challenging the government on legislation that impacts their lives. We should expect wonderful possibilities from those with Down syndrome, as we expect from all other children regardless of difference or ability.
Those with Down syndrome are Amazing People too!
Being different can be an amazing journey, and it certainly builds character. It can take a lot to accept or understand the difference of self, or in others, and being a parent of a child with Down syndrome or a person with Down syndrome is no different.
As a parent you need to be adaptable in order to prepare for what lies ahead – the good, the bad and the ugly. You need courage to get through tough medical situations such as epilepsy or heart surgery. You need wisdom to navigate the complexities of the medical, social and education arenas, that at times feel as if they are set up just to make life harder. But perhaps most importantly you need fill your home with as much optimism as possible, so that your child can develop strength of character, and is able to feel as if they can do or try anything that they put their mind to.
Living your best life with Down syndrome may not be without its challenges but the Down syndrome community is resilient! Doors are not always open, and minds often need to be challenged to be fair and open about the abilities of those in this community and the tenacity required to accomplish all that they do. It is important to encourage a ‘can do’ attitude, self-control and perseverance so that the social perceptions of the capabilities of the Down syndrome community are seen for exactly what they are – downright amazing!
If you’d like more information about Amazing People Schools, visit our website where you can try our award-winning character and wellbeing platform for free.
Danise Grant is mother to Arelyse, a three-year-old little girl with Down syndrome. A former teacher, with an MA in education, Danise currently works as a freelance Diversity, Inclusion and Education Consultant, and is Founder of the online community Panda’s Tree, a support group for Black and Mixed families with children with Down syndrome.
[1] Is a phrase taken from Heather Avis’ book, “The Lucky Few: Finding God’s Best in the Most Unlikely Places.” https://themighty.com/2019/03/the-lucky-few-families-down-syndrome/
[2] UN – Down syndrome https://www.un.org/en/observances/down-syndrome-day
[3] Mum on a mission https://positiveaboutdownsyndrome.co.uk/team-member/nicola-enoch/
[4] https://www.aims.org.uk/journal/item/attitudes-language-down-syndrome#:~:text=Author%20bio%3A%20Nicola%20Enoch%20is,stakeholders%20to%20achieve%20this%20goal.