Do you have a relationship with someone with Down syndrome?

Graph from Sept. 28, 1913 New York Times article

With October being National Down Syndrome Awareness Month, I wonder if you have a relationship with someone with Down syndrome? 

I ask because that truly is the best way to become aware of what living a life with Down syndrome is like. Actually getting to know someone and spending time with them, versus simply reading about how many chromosomes they have.

For many, “Down syndrome” is shorthand for a few characteristics. Many people will associate Down syndrome with a stereotype of being very sweet and loving. But, for almost all, Down syndrome is associated with what is now called intellectual disability, still commonly referred to as mental retardation.

Indeed, I recall reading a quote several years ago that the association with mental retardation is the main concern of expectant women receiving a prenatal diagnosis. And, that is understandable.

Down syndrome is also associated with hypotonia, certain facial features, like almond-shaped eyes, and some serious health issues, like a heart defect. But for those physical characteristics that cannot be treated, low muscle tone is probably not the main concern when a woman learns prenatally her child has Down syndrome. Similarly, while a heart condition often is the focus when it is diagnosed, fortunately over 90% of surgeries are successful.

Instead, the concern that persists for the lifetime of the person with Down syndrome is intellectual disability, typically in the mild to moderate range.

It is that characteristic of Down syndrome that cause women who choose to terminate to express concern over their ability to care for their child, for their child to care for himself or herself, and the amount of care the child may demand that could impact their relationships with their partners and other children.

Those are all legitimate concerns. But, they are legitimate concerns when expecting any new member to a family. The concerns, however, are augmented by the fact that Down syndrome is associated with a range of intellectual disability.

But what do most of us know about intellectual disability?

If we are really honest with ourselves, I expect what most know about those individuals with intellectual disability is next-to-nothing about the individuals themselves.

Rather, what most of us know are the insults used to describe someone with intellectual disability. And, in the case of intellectual disabilities, these insults were all actual medical terms for the condition:

• Moron
• Idiot
• Imbecile
• Retard

These terms, however, tell us pretty much nothing about what it is like to live a life with an intellectual disability. Worse, they bias that image in the most negative light.

Beyond the insults based on out-dated medical terminology, then, where is the source for most people’s information about intellectual disability?

Again, it’s not from the actual people living with intellectual disability. Sure, we all have likely had an experience where we saw someone who appeared to have intellectual disability–more apparent in the case of Down syndrome due to the tell-tale physical characteristics. But, how many of us actually took the time to get to know that person?

This has always been the paradox of the medical box that individuals with intellectual disability are placed in: they are considered stupid by a society that has not taken the time to get to know them. The very definition of stupid: lacking the intelligence on the condition or exercising the common sense to first get to know the condition before judging it.

For this Down Syndrome Awareness Month, raise the best level of awareness for yourself: by actually getting to know people with Down syndrome.