I estimate that close to three-quarters of the Stern population work — in some capacity or other — with individuals with special needs, whether it be through HASC, Yachad or Ohel Bais Ezra; most likely more than one of you work with my older sister who has special needs, and who lives in a group residence home for women with disabilities. When I speak to my sister on the phone she excitedly tells me about her beloved Shabbat “counselors” whose weekly arrivals bring much needed company, entertainment and care to her and her peers; these women see my sister more often than I do. Their presence in my sister’s lives — and the lives of all the women in her home — is invaluable, and I have a huge amount of Hakarat Hatov to these nameless women whose voices I would hear in the background of our Erev Shabbat phone calls. The fact that I didn’t know who the women who spend more time with my own sister were never troubled me. After all, they were living their lives, doing their jobs and I was doing mine. Our lives were disconnected.
The distance between these women and myself was unexpectedly shortened during my first year at Stern. Sitting in a fascinating Navi class of fifteen or so students, I began to quickly learn my classmates’ names as our professor encouraged our class to take advantage of the small class and break up into groups of two or three to learn some of the class material on our own. Little did I know that the girl sitting to the immediate right of me saw my sister practically on a weekly basis…but that comes later. As I began the Spring semester, my sister would mention that one of her Shabbos council also went to Stern. “I told her that you do, too!” she gushed excitedly, while I internally groaned. What had my adorably loquacious sister, whose social filters were known to be weaker than most, divulged to a total stranger? A stranger who also happens to my peer?
I suddenly began thinking in waves of worries: “Who was this person and what did they know about me? Or my family? What if she shared information with her friends? What if—” my fears were stopped suddenly when I thought with relief: “Well, at least there’s HIPAA. My secrets are safe.” The Health Insurance Portability and Accountability Act (or HIPAA) is a law designed to protects patients’ privacy regarding their medical conditions, treatment, etc. (Please note this is an oversimplified definition that does not do this greatly complicated law justice. For more information please visit: http://www.hhs.gov/hipaa/) Working with these adults with special needs requires these counselors to know sensitive medical information regarding medications, treatments, therapies, etc. They are also privy to any personal information that may come up during a Shabbat afternoon chat. I wondered who this counselor was; did I know her? Did she know me? More importantly, what did she know about me and would she adhere to the government mandated silence between the two of us? I hoped to never find out. I ended the phone call by wearily asking my sister what this counselor’s name was, “Sarah*”. I had only a first name to work with — my sister could not recall this girl’s surname, major, dorm assignment, nothing! — and a weak description of “brownish hair, really nice, and wears very nice clothes.” (This description could have easily described a quarter of the Stern population.) As the semester continued, I would hear updates about Sarah but I had no more clues to work with. Finally, one Friday, my sister mentioned that Sarah was in one of my classes! When asked what class it was, my sister apologized profusely that she had “forgot”. I had been so close!…and yet so far.
Fast forward to my small Navi class during the last months of the semester. Getting my books ready for class, my head suddenly snapped up when my teacher read off “Sarah…”. I looked over at the girl sitting next to me. I realized that here she was; the girl I had heard about for months had been sitting next to me all along. My sister’s vague descriptions fit this girl. Furthermore, I recalled hearing her mention to another student that she worked as a Shabbos counselor some weekends.
When I confronted her after class about her weekend plans she hesitantly said she would be working at a HASC residence in Flatbush. I offered my sister’s name as one of the residents and she started smiling, and confided that only once I had approached her directly with my sister’s name was she allowed to discuss her with me. What followed was nothing short of amazing: For weeks my sister had been asking Sarah to send regards to me. Having recognized my last name on the first day of classes, — but not wanting to violate any HIPPA laws — she told me that she would go out of her way to say hello to me in the hallways so that she could respect my sister’s wishes as well as her privacy. I was amazed and grateful for her respect and diligence but mostly for her incredible care and compassion that she clearly held for my sister’s — and subsequently my — privacy.
I ran into Sarah a few weeks back on the LIRR. She has been married for nearly a year now and, ironically, lives a fifteen minute drive away from my home in Long Island. She caught my eye walking down the train aisle and excitedly greeted me, asking how I was doing at Stern and what my plans were for next year. She then progressed to ask about my sister: Had I spoken to her recently? How was she doing at work? I realized then that the laws that I had once seen as barriers between my sisters’ caretakers and my world were in fact doors that only certain people had a key to. I answered her questions the best I could (I admittedly had not spoken to my sister in a quite a few weeks), wished her a heartfelt ‘Good Shabbos!’ and exited the train.
This encounter was so different from the one two years prior and yet they were so similar. Regarding the former, I was no longer a timid sophomore who felt insecure with people having access to a well-spring of family stories, history and anecdotes through the care that they showed to my disabled sister. Instead, I was now an informed senior who realized that this woman could care less what ‘drama’ had occurred in the Lowenstein household. The main thing in common with the previous situation was that we both loved this one person who, through a series of unlikely events, had joined us. What’s more, she handled our close proximity with each other over a semester at college with poise, discernment and respect.
We humans — and specifically we students at Stern — are connected in ways that we are not always privy to — as Sarah and I were through my sister — but that doesn’t mean that those connections aren’t any less real or significant than those with whom we share our everyday stories. This was just one specific example — of which there are many sequels of various Stern peers whom I have discovered work closely with my sister— of how intertwined our lives are despite our often insistence that we are living parallel, unique existences. We are fragile beings whose strings of connection are sometimes concealed by even the parties that are involved, but that doesn’t make our intersections any less significant.
I address this article to the many dedicated and caring Shabbos counselors at Stern who set aside their weekends to exercise compassion — while making a little income — to adhere to the HIPPA laws that you are bound to. Not only for the legality reason — a reason that is serious enough to not warrant a further explanation; the law is the law — but also for the slightly more petty human aspect of privacy for all the parties involved. If our lives overlap, so be it; I will happily say ‘thank you’. But for now, let us remain behind our respective boundary lines. This is not to say that I am in any way embarrassed of my sister — G-d forbid! — just a reminder that her privacy is also mine and vice versa. I used to see these lines as mysterious and restrictive but now I see them as necessary and doing service. not only to the individual with special needs involved, but also to the individual’s family, AKA me. Adherence to the HIPAA laws ensures me that my sister’s privacy is safe as well as mine. I don’t have to worry that Student XYZ is blabbing about my family’s personal matters in the caf because (hopefully) she realizes that when she talks about my sister’s life, she’s also talking about mine.
They say in college you have experiences that help form who you are; you meet people and have interactions that help widen the scope of your surroundings and mindset. I believed that these interactions with Sarah (and other HASC counselors that I have sniffed out at Stern that work with her) showed me a more human side to these privacy laws. I learned that the people that you spend everyday with have lives that you do not fully know about. You may not know what goes on behind their doors and maybe, like in these cases, those doors strangely lead to yours, reminding me that though we are connected in more ways that we realize, some secrets are meant to be kept.