Welcome to the start of another Down’s Syndrome Awareness month, this year our focus as a charity is the theme #HoldsMeBack.  This year we want to do something different and invite the community to challenge some of the ideas we’ve held as ‘gospel truths’ about Down’s Syndrome for many years. With the passage of time, and medical research and advances, ideas that became untruths or less certain.

When we look at this lovely young man we can imagine what his parents were told when he was born.  Language and terminology that now is considered derogatory or even hate speech. Limitations and expectations were taken as facts. Perhaps they were told “he might not walk/talk/learn” or “you need not bring him home”.  Indeed to take a child with Down’s Syndrome home was counter cultural for many years.

 

In the past no one questioned the information they were passed and, like batons, these ideas were passed on to others through the years. As society decided they deserved the same rights as others; access to education and healthcare was slowly drip fed to each passing generation of people with Down’s Syndrome. So we saw that when offered the same  stimulating environments, educational adjustments and basic healthcare we saw our community- as a whole- move forward.

 

I do not believe that the majority of the ‘professionals’ of the past held ill will against our community, they just saw things a certain way. Questioning it would have seemed ludicrous, these were the ‘facts’ about Down’s Syndrome.

 

What about now, in 2020? What immutable ‘facts’ will we see passed like batons this year? We want to ask you to think about ‘Why?’ these ‘facts’ might be so.  When our mother in the 1900s was told “he will never read” was that he couldn’t or because her beautiful son needed speech and language therapy, glasses and basic education? Let’s begin by unpacking why myths seem to predominate the community (hint: lack of research will feature!).

 

There are many myths and misconceptions about people with Down’s Syndrome which can be attributed to a couple of factors:

Firstly, society’s understanding of Down’s Syndrome has not yet caught up with the real life experience of living with the condition today. Whilst many people with Down’s syndrome are more visible in our communities, there remains a stubborn reluctance to equally celebrate the life of those with the condition. Even within the Down’s syndrome community myths are perpetuated rather than challenged. We are rightly encouraged to love and accept people with Down’s syndrome but not to question how the condition holds them back.

 “Even within the Down’s syndrome community myths are perpetuated rather than challenged.”

This leads us to our second point, that the lack of specific medical research means we are unable to challenge our healthcare professionals to provide targeted care that understands the medical needs of those with Down’s syndrome.

 

Over the coming weeks, to celebrate Down’s Syndrome Awareness Month, the Foundation will challenge the myths that often circulate during awareness campaigns. We believe acceptance of these myths, particularly from within the community, hinders the demand for research into areas which would specifically benefit those with Down’s syndrome. There are many advances that we can celebrate together but we must not take our eye off the ball and allow the general health of those with Down’s syndrome to plateau. We owe that to those have come before us, the trail blazers.

 “What holds you back?”

 

For this year’s Down’s Syndrome Awareness Month we will be asking people with Down’s syndrome, their loved ones and carers “What holds you back?” It is right we ask people how their lives can be made healthier or what issues make life hard. At the Foundation we want all people with Down’s syndrome to thrive but we cannot achieve this if we do not acknowledge the very real problems that do exist.

“…just £5.33 per person with Down’s syndrome is spent on research that could directly benefit them”

 

Currently just £5.33 per person with Down’s syndrome is spent on research that could directly benefit them through interventions (per year). This compares with £228 for those with cancer, and £127 for those with dementia. We are committed to funding research that will improve medical, cognitive and mental health issues associated with Down’s syndrome, we cannot stand still and we need your help- to fundraise, donate and spread the word.

 

Do please tell us “What holds you back” by downloading our HoldsMeBackPoster poster (condition specific posters also below). Please send us a photo of you holding the sign and we will include it in our research awareness posts on social media and our blog.

David Elliott and Dr Liz Corcoran, chair of the DSRF UK and sister.

 

overshadowing holdsmeback

tubefeeding holdsmeback

reflux holdsmeback

apnea holdsmeback

coeliac holdsmeback

dual diagnosis holdsmeback

ASD holdsmeback

thyroid holdsmeback

lackofresearch holdsmeback

Blank HoldsMeBackPoster

 

Banner image:

New York State Institute: a group of boys with Down’s syndrome, standing on some steps. Shuttleworth, G. E. 1842-1928. Date 1902