Search

WORLD DOWN SYNDROME DAY

Awareness days are fabulous! They bring attention to disabilities, important causes, promote positive ideologies and so much more. Today is, of course, World Down Syndrome Day - a day I only recently knew existed. I am, however, aware of the condition. Having just turned 44 (yikes!), I've been around long enough to remember a different time for people with Down's. When I was little, they were commonly called a not-so-kind name which I won't repeat here. I also remember that at the time they had a short life expectancy. And I recall having lovely experiences with them and having the impression that they were very sweet-natured.


Now a mother myself, I have a different interaction with the condition. My daughter, who has special needs, attends a school with children who have Down's. And interestingly, her support worker who does extra-curricular activities with her has an adult son with the condition. They often all go out to dinner together and my daughter gets along well with him. Beautiful thing is, I don't think it has ever occurred to her that there's any difference between them.   


Another interaction I've had with Down Syndrome has been at the beginning of both of my pregnancies. Specifically, the prenatal nuchal translucency scan offered an indicator of whether my babies were at risk of this and other conditions. The test only indicates the risk - not a conclusive diagnosis - of Down's, which is caused by a genetic anomaly where the cells reproduce an extra copy of chromosome 21. This results in the familiar, distinctive facial features, learning difficulties, heart problems and physical growth delays. In my case, both prenatal screenings indicated a low risk of Down's and both babies were born without it. I understand and accept that thousands of women a year make the decision to terminate based on high-risk results and I make no statement about that. But for me, even if I received those results I would have given birth.  

This is not a post about ​the rights and wrongs of abortion. It is, however, a foray into attitudes toward disability. When I look back I marvel at it now but I have strangely always had a great sense of compassion towards disabled people. There's nothing noble about that; I can't take credit for it because I don't really know the reason for it. The irony of having this attitude was not lost on me when my daughter developed disabilities of her own.  This preexisting attitude made me readily able to accept her. However, many parents struggle to do this for their children and I feel compassion towards them, too. It isn't easy. When looking into the future this is not what they expected. Yet, the unpredictability of the future is the very reason I think it is important not to draw immediate conclusions based on prenatal screening results.  Unless the poor prognosis of a particular condition is absolutely conclusive and inevitable, it is impossible to know what the future holds. We cannot predict how much difficulty, or joy/pleasure, life will bring. In fact, even with a low risk of disability or illness, we still have no way of predicting the future. Because life happens - to everyone.  Just like it did to me when after an uneventful pregnancy my low-risk baby experienced serious complications at birth, nearly died and went on to have disabilities. Her life wasn't worth any less then than it was before I gave birth. And when overwhelmed by the dark circumstances of her birth, there's no way I could have predicted the amazing person she has become and the incredible things she has achieved. None of us have a crystal ball. People born healthy later get sick. People born able-bodied later become disabled. If everyone had children based on what the future may hold, most of us wouldn't have children.  Here's the cold, hard truth. Most people are not born with disabilities. Over 80% of disabilities occur after birth due to illness, accidents, physical harm or mental illness. As such, disability can potentially touch any of us - at any time. When we view disability this way, we're less likely to view it as a 'problem' to be eradicated and more likely to view it is a reality affecting all of us which requires attention and care.  

Today is a day set aside to acknowledge Down Syndrome. It's important to be aware of Down Syndrome but it is also important not to define people by it. I am positive that most - if not all - people with Down's do not consider their condition to be the sum total of who they are. Like anyone, they are people who happen to have a disability - but they themselves are not their disability. When my daughter was in the throes of epilepsy, for the most part I refused to refer to her as 'epileptic'. I used to say that she is my daughter and 'has epilepsy'. May seem like mere semantics to some but for me it was important to make that distinction. She is my daughter who was having a difficult time due to health problems. But that was her experience; it wasn't who she was. And isn't that the truth for any of us at any given time? We may have problems but these problems do not necessarily define us in entirety. People without disability are not any more entitled to that distinction than those who are disabled. 

Unlike when I was little, people with Down's are now living longer than ever. And they are living fulfilling, joyful, productive lives. They have setbacks but they overcome - just like anyone else. They are not to be pitied. They are not to be disparaged, avoided or relegated. They are just people. They may be nice, horrible, considerate or selfish. They can be intelligent or have low intelligence. They may be creative, intuitive, sociable or antisocial. They may be highly-skilled or not very capable. These are all descriptions that can be applied to ANYONE - disabled or not. They aren't a burden on society any more than anyone else. Because in truth, we all are in need of patience, compassion, fairness and care at various points in our lives. World Down Syndrome Day is not just about the condition. It is about the wonderful people, in their totality, who have this condition - their hopes, challenges, aspirations, achievements and worth as human beings. My hope for this day of awareness is that whilst we become aware of the lives impacted by this condition, we also grow in understanding that we probably have far more in common with each other than not. 

We always aim to respond immediately but if we're unavailable please allow up to 2 working days for telephone or email responses. ​

REGISTERED OFFICE:

5A Signal Walk

Highams Park

London E4 9BW

PHONE:
0330 311 0016

Normal landline call charges apply 
Mondays - Fridays 10am-4pm

THE ASHLIE PROJECT CIC

A Community Interest Company
Company Number 07092725