Knowing she will be the guardian for her older sibling has influenced the professional and personal choices of Emily Benson Chatzky '15 L'19.
By Eric Townsend
If not already, for many of us, there will come a time when we assume the responsibility to care for an elderly parent. From living arrangements to personal finances to end-of-life care, these decisions are, more often than not, guided by conversations or advanced directives outlined in a living will.
Far fewer of us will ever care for a sibling. If we do, it might be for a short period of time, perhaps at an older age when his or her spouse has long been gone. But we almost never expect it to happen, let alone plan in advance for such a moment. So, what do you do when you have time to prepare? When you’ve sensed since you were a child that you will one day be responsible for the care of your older sister? And that her care will likely extend for decades once your parents are no longer able to be guardians? What do you do if you’re Emily Benson Chatzky ’15 L’19?
The first thing you notice in the photos of Emily with her older sister, Sarah, is the smile. Not Emily’s smile. Sarah’s. You see it in the photos of her 11-year-old-self visiting the hospital to hold Emily, who had been born nine weeks early. You see it in the photos of her holding Emily in a pool, and in posing with Emily and Pluto at Disney World.
Diagnosed with translocation of the 18th chromosome, a form of developmental delay that affects cognition and physical appearance, Sarah first showed signs of intellectual impairments as a young toddler. She today navigates life at JARC Florida, a residential community designed for adults with special needs, and works at a nearby Cheesecake Factory. Emily has few early memories of her sister. Sarah had moved from the family’s Connecticut home to JARC in Boca Raton when Emily was in third grade. “A lot of people don’t have the option to do what my parents did for her,” says Emily, who would visit Sarah two or three times each year. “They would always tell me that was the only way for her to have her own life.”
The Arc, a national advocacy group for people with developmental and intellectual disabilities, estimates that 600,000 to 700,000 families in the United States include an adult with an intellectual or developmental disability where there is no plan once an aging relative is unable to provide care. In that regard, Sarah is fortunate—her parents, Deborah and Gregg, have long had a plan for her lifelong care. The plan includes Emily.
As a child, Emily envisioned careers in either medicine or law. Both her parents practiced law. It wasn’t until she interned at JARC Florida before her sophomore year of college that she discovered a love for vulnerable populations and the careers that existed to make a difference for people who lacked the ability to speak for themselves. For Emily, that didn’t rule out a legal career. She simply wanted to see what else was possible.
At Elon she majored in psychology. She joined the Epsilon Sigma Alpha co-ed service sorority. She completed an undergraduate research project that even today is shared with senior seminars when Associate Professor Katie King wants to illustrate superior student scholarship: an analysis of coping mechanisms for family caregivers of adult children with developmental delays. Surveys were conducted at—where else?—JARC. “Emily was starting to understand that she may want to work with this population in her career,” King said, “not in a direct way, but rather as an advocate.”
That understanding led Emily to New York City following her Elon graduation to earn a Master of Social Work degree at Columbia University. Seeing in the Big Apple many of the barriers to access and regulatory limitations of social work, and always reflecting on her early interest in law, Emily returned to North Carolina to begin legal studies at Elon Law as an Advocacy Fellow. In November she was elected editor-in-chief by her peers on the Elon Law Review. “Policies and government dictate so much for people with disabilities,” Emily says. “I wanted to make myself a better attorney to fight for people. There are a lot of vulnerable populations in the world.”
“She was always determined to keep going, and to get degrees, and to change the world. She’d always talk about ‘changing the world,’” says Jenna Gilder ’15, one of Emily’s friends from Elon’s psychology program. “Emily loves her sister and talks about her all the time. When I met Sarah, it was like meeting a celebrity. I said to her, ‘I know so much about you!’”
If you want to point to a particular moment when Emily “officially” learned of her future role as Sarah’s guardian, it was shortly after her parents moved to Florida during Emily’s sophomore year at Elon. The move required Gregg and Deborah Benson to update their estate plans. The conversation wasn’t lengthy or dramatic. “We’re redoing our wills and assume it’s OK to name you as Sarah’s successor guardian and successor trustee,” Deborah asked.
Emily’s response: “Well, of course it’s OK!”
It wasn’t a surprise. Emily will tell you how she has always sensed she would one day look after Sarah. The sisters connect in a way that isn’t possible with their brother, and knowing what awaits her has influenced more than Emily’s academic and professional interests. It has shaped her relationships with would-be suitors. The men in her life knew from almost their first date with Emily how she prioritized Sarah. Not that there was a “Sarah test,” but in hindsight, Emily now sees how Sarah was receptive (or not) to boyfriends who met the family.
So who did Emily Benson just marry? Jacob Chatzky, an occupational therapist for children with special needs—and a new brother-in-law whom Sarah, a bridesmaid at their December wedding, simply adores. He’s a familiar face to Sarah having once worked at JARC. Their plan is to eventually move back to Florida, where Emily aspires to practice disability and Social Security law to protect vulnerable people.
Emily and her husband also will continue their double dates with Sarah and her friends. Emily will continue her daily phone calls with Sarah because of how much Sarah loves to share about her work and JARC community. Emily will continue to help her parents manage Sarah (who sometimes ignores their mother and father but will do anything her sister asks). After all, Sarah looks up to Emily, and Deborah Benson is convinced the relationship has shaped the professional path Emily has chosen. “If she didn’t have a sister with special needs, how different would her life have been? Would she have done something completely different? As her mother, I think she would have done something similar,” says Deborah. “It’s who she is, and that’s what her heart is about. If she had no sister with special needs, she still would have done something about helping those who were less fortunate. I don’t think she can fill her heart if she’s not doing that something.”
Outside of grassroots organizations like the Chicago-based Sibling Leadership Network, little research exists on siblings who care for a brother or sister. What scholars have identified is that many siblings aren’t always aware of the resources available to them, or even the different levels of responsibility the law recognizes.
Thus, if you’re Emily Benson Chatzky, and you have time to prepare for one day being your sister’s guardian, and you know that you have the education and support needed to be a loyal caregiver, you’re better able to ask yourself questions that many others don’t consider: What happens when my parents are no longer here? What if I can’t afford to keep her where my parents want her and where Sarah is happiest? What kind of major decisions might I have to make down the road that could be very difficult? What kind of level of personal involvement is best for her growth and independence and for my personal life?
There is at least one person sure that Emily’s heart is in the right place. “My sister told me when she comes back to Florida, that she will come and get me—and keep me safe. … I miss her a lot. I really love her.”