a group of symptoms which consistently occur together, or a condition characterized by a set of associated symptoms.
A syndrome is only sought out, studied, and defined when something …..or some things….are different. There are syndromes with which most are acquainted (Down Syndrome, Aspberger’s Syndrome…) and then there are syndromes not as well known (Williams, Turner, Marfan, Costello…) but they are all groups of differences.
In bygone years, being noticeably different was an almost guarantee to be left out or shunned. These days, thankfully, differences are welcome. Schools, shuls, industry, and the Olympics all have room for differences…as long as they are different enough: Most still struggle with members who are “a little off” or “don’t really fit” even as they celebrate individuals with autism, physical handicap, or cognitive delays. Ironically, even misfits have to fit. They have to fit our notion of differences. Namely, “Since most people experience X and produce Y, your markedly different experience will produce Z. Oh, and don’t tell me your experience isn’t so different…….”
We tend to want differences to be very different and our expectations are often informed by our biases. In my own instance, most strangers would bet against me in a headstand contest. After all, the reasoning goes, why should an overweight man of 40 possess this particularly unhelpful skill? Of course, I wasn’t always overweight or 40, but those two factors have created a bias and the assumption is that I would lose in that setting.
The same is true of disabilities and genetic disorders. Some 15 years ago, I brought a group of young men to a blood drive. These fellows were excited to donate blood for the first time and we lined up with the others to fill out paperwork and have vital signs checked. All of the young men had been diagnosed with one disability or another but only a few had Down Syndrome. As I accompanied one of the young men to his medical interview, the attendant looked at my student and turned to me: “He can’t donate blood! He has a disease.”. I was more upset than incredulous, but I had to ask: “Excuse me? How do you figure?”
The response came quickly: “Don’t tell me that he can give blood. He clearly has Down Syndrome and I’m no fool.”
I informed the phlebotomy technician that he was wrong and then insisted on speaking with his supervisor who eventually agreed.
And then there was the student (also with Down Syndrome) who was offered to join the Yeshiva band in their Chanukah performance. When I informed him and them that spending time on the stage behind a dead mic isn’t really joining the band, he begrudgingly accepted and it was they (the band) who looked at me, quizzically, and said “Really? He understands?” Yes, guys. Just because he is different, doesn’t mean he is that different.
Almost ten years ago, after several hours of interviews, an article was being written about our special needs gap year program. The editor sent the story back to its author because “Trust me it’s not all fun and games….I was once tackled by someone who weighed 300lbs and refused to get up.” In other words, this editor was suggesting that his singular experience informed the rule and not the exception. No matter that those interviewed had a combined 70 years of experience. This fellow had had a bad experience that more seamlessly aligned with his bias so his bias, not our experience, had to be accurate.
Three individuals with disabilities walked into an ice cream store……
No, it’s not the beginning of an off-colored joke. It’s a true story which took place just a few months ago. One of them has a significant physical handicap. He was approached by a grandmotherly sort, who thrust 50 shekels into his hand and told him to treat himself to ice cream. He had his own money and preferred to use it…especially as he was pretty embarrassed standing there among his friends, but there was nothing for him to do: she had decided that he was an invalid and that he was to be the recipient of her kindness. His friend who walks with a less noticeable but still extant limp was offered one free scoop by the ice cream store (whereas the first was treated to a double or triple scoop) and their buddy – a fellow with high functioning ASD who could have really used the pick-me-up – wasn’t offered anything. I guess it was his fault for not looking needy enough. His differences weren’t different ENOUGH.
As we look at 3/21 once again, and we think of the challenges experienced by people who have Down Syndrome, take a few minutes to remind yourself not to invent challenges or to define people by their challenges. When it comes to stereotypes, our society is horrified when we define ethnic or minority groups by their stereotypical challenges. Yet too often we look at the disabled or differently abled as a group defined by what they can not do. To be sure, they have very real disabilities and challenges. Very little good can come of ignoring those challenges – but why define people that way? Is that how we’ll sum them up in an obituary? “Today, John passed away after many years of walking with crutches”. “Sylvia was 83 when she died. She will be remembered for her trouble with long division”. Of course not! These are mere elements in a much larger and hopefully more complex and beautiful picture! Differences are the very thing that gives color to our human experience but they can’t be *The* story. Like spices, they flavor what might otherwise be bland, but also like spices, they can not be the main dish.
And when differences aren’t different enough, that’s not a reason to be dismissive or exclusive. It is too often that well-meaning people invest in those who are more noticeably different. It’s time to change that. Include those who are different but also include those who aren’t…..and the ones who fall in between as well. Don’t assume what someone can or can’t do (you are welcome to challenge me to a headstand contest) and don’t make acceptance dependent on what they can or can’t do.
As one of my students recently said when asked how it feels to have Down Syndrome:
“Some people are tall and some people are short; some people are fat and some people are skinny……and I have Down Syndrome”.
World Down Syndrome Day is marked each year on March 21, chosen to signify the uniqueness of the triplication of the 21st chromosome which causes Down syndrome.