The world we live in can be a scary place. Anyone who watches the news or spends any time on social media is inundated with stories about people who have ulterior motives. We’re socialized to mistrust, even when people are trying to do good.
I get it.
As a mother of a child who has Down syndrome, there have been times when I was leery of strangers who showed my son a little too much attention. I’ve been cautious, just like any other parent. I’ve wondered, are they genuinely interested, or just intent on making fun of child who is different?
I’ve been there.
When someone who seems to have no obvious connection to a particular issue starts speaking out, we might have questions.
- What’s in it for you?
- What’s your angle?
- Why do you care?
It’s a form of self-protection against those who would do us harm. (Recently, I’ve wished people would do more critical thinking when it comes to the source of certain information – but that’s another blog post all together.)
When it comes to things like race, ethnicity, or even religion, we’re all vulnerable. We might be suspicious of someone who claims to be “one of us” when the connection isn’t obvious. It’s natural not to want anyone who “doesn’t get it” muddying the waters.
On the other hand, some people don’t much like having to put labels on themselves – or their children. It’s not always about pride or shame. Some of us feel that we should be judged (or not) by our actions, not our affiliations.
But, sometimes, in this world we live in, to get people to even listen to what you’re saying, there’s a need to explain your motivation.
When I started the campaign on racial disparities within the Down syndrome community, those who know me immediately understood. Those who didn’t know me personally, but knew of Josh, [I’m guessing] thought it was just another one of my crusades for Down syndrome advocacy.
You see, by looking at pictures, you may be able to tell that my son has Down syndrome. What you may not be able to tell is that he is bi-racial.
People within the Down syndrome community, and even some outside of it, have been celebrating the fact that because of the medical and social advances made during the past generation, people who have Down syndrome are expected to live much longer; into their sixties and beyond.
But, there’s this study….
Since I read it, there’s been a flashing neon sign in mind every time I hear or see someone quote those numbers.
“Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.”
According to the study, published by the Centers for Disease Control, (a news source that I trust) people of color who have Down syndrome only live half as long as their White peers.
Half of 60 – is 30.
My bi-racial son turns 29 in January.
Yes, I’m skeptical. I tell myself that access to quality health care makes a difference. I tell myself being informed and active within the community makes a difference.
And then, there are moments when I think – one more year. What if….
What if there is any truth to it. What if it’s genetic? What if there is something else I can do to extend his life?
What about the rest of the community? What if I can help another family?
It keeps me up some nights.
So for those who wonder,
THAT’s why I care.
If you care too, please help us DO something about it – I promise, I won’t ask you why you care.