Please Stop Staring



Please stop staring!


Even though I’ve lived with it all my life, there is one thing I will never ever get used to—people staring at my uncle. My Uncle Robert is one year older than me and was born with Down’s Syndrome. He just turned 57.  This is extraordinary for someone living with his condition.  As late as 1983 the average life expectancy for a person with Down’s was 25.  Today that number is closer to 60. 


Special Needs


Robert was born in the 1950s when most of the population understood very little about mental retardation. Back then, if you suffered from Down’s or other similar afflictions you were labeled “retarded”. Now we say people like Robert have “special needs” or are “differently-abled”. Whatever the terminology, Robert is clearly not normal as we typically define it.  Not only is  his capacity to think and reason limited, but he exhibits some of the traditional physical traits common among people born with Down’s—that is low muscle tone, small stature and an upward slant to the eyes.  Ironically, the man we might objectively label as an “abnormal” human being turns out to be a happy, loving and giving soul—this in spite or maybe because of his condition.


No Longer Hidden


I struggled growning up as I witnessed people stare and gawk at my uncle.

This is me with Robert when we were still young children.

When Robert and I were very young and we went out in public, people would stop and stare. In those days, there wasn’t much mainstream acceptance of people with Down’s. In fact, it was still common in the 50’s and 60’s for families to either institutionalize or hide the existence of family members born with mental retardation. In this sense, Robert was an unknowing pioneer for greater awareness as my grandparents chose to raise him like his three other siblings.  This meant there was no attempt to sugarcoat his affliction or hide him away from prying eyes.  In fact, my grandparents would take him with us wherever we went. Not surprisingly, Robert and the rest of us were subjected to lots of unwanted staring and comments from others—both from children and adults.


Better, But…


Nowadays, things are far better and different than they were in our youth.  It still isn’t a perfect world by any means, but there is clearly greater understanding and acceptance of people like Robert in social settings.  Unfortunately, even over the course of Robert’s lifetime (i.e. 57 years) we still occasionally run into people who don’t have a clue.  Naturally, that makes me angry—often very angry.


We’re All Curious


I imagine many people don’t even realize they are staring, and if they did they would be apologetic—perhaps even embarrassed.  Believe me, I do have sympathy.  For example, I know I will often do a double-take when I see someone who appears “out of the norm”. I think it’s natural to be curious, and it shouldn’t mean we are automatically repulsed or judgmental. In fact, I may start wondering about the person’s particular situation.  I’ll ask myself if they have suffered like my uncle.  Or whether I should be doing something to make life better or easier for them, like say, “Hi” with a smile, or open a door.   Still, I do my utmost never to stare with a sense of shock or surprise written all over my face.  And I’ve also learned how important it is to refrain from sharing some judgment I have with others, especially as I’ve learned judgment is typically born out of our own fears and prejudices.



One Of The Gang


I sometimes internally cringe when I’m out with my uncle and a group of children approaches. In my mind, I go right back to those times when we were growing up and the kids in our neighborhood would unmercifully stare, laugh and tease us. I suspect Robert didn’t understand much of what was said. Yet I also believe he knew the other kids weren’t being nice, and in many cases the actions and words being lobbed our way hurt him. All Robert ever wanted to do was to be part of the gang and have fun. He couldn’t change the way he was.  So even today when I see little kids coming near him, I prepare myself for the worst.  Thankfully, my concern is usually unwarranted as most people are kind, considerate or don’t pay attention.


Still Clueless


However, it pains me to no end to discover there are still people who haven’t received the message. And when we run into them, their unthinking and uncaring actions and words still have the capacity to cut to the core.  The other night we took my uncle out for dinner. This is a regular event for my husband and I and one of Robert’s few real enjoyments. It all started innocently enough: The restaurant was nice, the wait staff friendly and the food quite tasty. Then a family of four was seated just across the aisle from our table.


Can You Close Your Mouth?


I immediately sensed trouble.  When the father saw Robert, he just stood there staring for quite some time. This was no surreptitious glance, either.  His face was wide open for display and I could almost see the thoughts running through his brain—should he ask for a different table, should they leave, was Robert’s condition potentially contagious? Initially, he was going to sit in a chair where his line of sight would naturally include Robert. After hesitating another moment, he directed his young son to change places with him. Of course, this was no help from my standpoint as the son sat and gaped at Robert like he was a monkey at the zoo. Worse, the parents said nothing—they never made the least effort to correct the situation.


Please Stop!


Though age has given me enough wisdom not to take all the stares and taunts personally, this situation still drove me crazy. I tried to get the kid’s attention in an effort to break the spell.  No such luck. I debated over saying something to the parents, throwing my napkin in the air, doing anything to change things. I wanted to chastise the family for being insensitive and cruel. I wanted to cry because this was just like growing up, but worse in a way because it was fifty years later! Have we learned nothing?  Most of all, I wanted to protect Robert from something I still hoped he was unaware of—being this family’s dinnertime amusement.


The Beauty In Innocence


I do know this: Robert might have offered a smile if he had actually engaged with the little boy who was staring at him. Robert is innocent—he might have wrongly interpreted the staring as an open invitation to interact. In any event there’s a very high probability he wouldn’t understand the ignorance or unwanted curiosity behind the child’s actions.  Sometimes, I’m glad Robert’s world is so simple and he doesn’t know how cruel and unthinking people can be.


I Am His Protector


Happier times.

These are mostly better days. One thing I know for certain is Robert will always be family.

When my grandmother passed away and my mother developed Alzheimer’s I became Robert’s legal guardian.  In a way, though, I have been one of Robert’s emotional protectors for as long as I can recall. Sometimes it wears me down for it’s a role I never wanted.   And yet, as tough as it can be, Robert is my family and that means I love him enough to know I could never give up fighting for him.   We don’t have the luxury of picking our family.  Yet if we did, I’d pick Robert over people like that man at the restaurant or his son, who in their own way seem more handicapped by their prejudice than Robert ever was from Down’s.


Lessons From Unexpected Places


I’ve learned a lot from Robert over the years. Robert lives mostly in the moment—something I wish I could do more of.  He’s generally happy and finds joy in simple pleasures and routine.  People who get to know him are often surprised that he has a real sense of humor, or how every birthday is better than the last, no matter how old he gets.  I sincerely wish life had been easier for Robert.  The trouble is some things in life don’t come with choices—no one ever asked Robert whether he wanted Down’s.  Thankfully, for most of us choices come easier.  For example, I can choose to show up and speak out for Robert when he can’t do it for himself.  And that’s why I urge those who would stop and gawk at people like him to be more considerate.  Your actions and words may not seem that bad in the moment, but they can and do impact those who suffer from conditions like Down’s, and they also impact those who by love or law come to care so much about them.



For more information on Down’s Syndrome visit the National Down Syndrome Society’s website.


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