Following up on a post from May, about Down syndrome in public (Awareness/Education), where I talked about our experiences out in public – shopping, playground, you name it. Sometimes, it can be awkward. Sometimes, people can be rude, let’s just put it out there. Staring, pointing, comments, name-calling….it can happen. Your best defense is to be prepared.
I’ve hesitated on this post, for a few reasons. We’ve been fortunate enough to not have this happen too much to us. Although we have had the staring and comments, I can’t think of any time when someone was flat out rude and mean-spirited; whether it’s my Spidey-sense, avoidance of mean people, or just good luck! I feel as if this topic is very specific as to the unique circumstances of each situation. I also feel like this topic could morph into about five other topics, including education, awareness/advocacy, behavior, social-skills, and inclusion. But let’s start with a scenario…
Say it finally happens. You’re out shopping at Target (who we love for inclusive ads!), and decide to have a snack at the food court. There’s this teenager, a couple booths down. He won’t stop staring at your toddler, who happens to have Down syndrome. He’s about 15. He keeps staring, and it’s really starting to bother you. What do you do? Let’s look at your choices.
- You continue to notice him, but don’t say anything. You don’t really know what to say, and no one else has noticed, so really, no harm, right?
- You glare back. He sees you, but keeps staring. Eventually, he looks away.
- You decide to do something.
As we’ve progressed on this journey, my responses have varied. When Caleb was little, I’d go with A. In our case, Caleb was usually being loud or inappropriate. The fact that he had Ds might have been a reason to stare longer, but it was really his behavior that started the ball rolling. I may have “advanced” to option B, staring back. I usually won (ie. Stubborn), because he or she ended up looking away, but, really, did I? Unless it’s just someone being rude, and no hope educating them, really thinking about what I should do and say brought me to option C.
Before responding, you’ll need to decide how much time you have. Do you have time to Educate? To help raise Awareness? If not, a simple “please stop staring” or “can I help you?” usually works. But if you have time, take the opportunity to educate this person. Will it take you out of your comfort zone? Most likely. At least for the first few times. But I promise you, it gets easier. Size up your audience – is it a teen? Adult? In the scenario above, I might ask the young man if he knows someone with Down syndrome, and based on his response (or lack thereof), try to tell him some things about Caleb.
You might have your “Elevator Speech” ready about Ds; include a few facts (maybe your kid’s name, if you up to it, that he or she has Down syndrome, how people with Ds can do most anything with enough guidance and support, how your life is really fairly typical – check out www.ndss.org for more facts). Think of some things you didn’t know before your child was born, and add those in. Tell them what all your child participates in, or what interests they have.
I find that if people really don’t want to know anything about Down syndrome, it will be pretty obvious quickly. But if they do, here’s your chance to really help advocate, in a subtle way; that life with a disability is not so different. People with disabilities shop at stores, eat at restaurants, enjoy playgrounds…just like typical people. Opening up the conversation allows people to get a glimpse into our lives, to share our stories, for however brief a time it may be.
Who knows, you might end of changing someone’s perspective as a result!