If what you do helps even one person, you’ve already made a world of difference. Seeing all the moving parts come together to bring your ideas to life can be one of the most exhilaratingly rewarding experiences. The process of creating something is also incredibly fulfilling. You get to interact with people you might not otherwise cross paths with and develop leadership, team-building and critical thinking skills that can be very useful in all of your daily work!
As part of my series about young people who are making an important social impact”, I had the pleasure of interviewing Dr. Lili Loni Barsky.
Lili Loni Barsky, MD, is a board-certified physician, patented inventor, writer, filmmaker and artist. She completed her undergraduate training at Northwestern University, earning a major degree in Biomedical Engineering and a minor degree in Film and Media Studies. She attended Rush Medical College in Chicago, Illinois, followed by residency training at Yale-New Haven Health/Bridgeport Hospital and Chief Residency at AMITA-Saint Francis Hospital. She has received clinical research fellowship training at the Barbra Streisand Women’s Heart Institute at Cedars-Sinai Medical Center in Los Angeles, CA. As a physician, she has extensive experience in the inpatient, critical care, ambulatory clinic and emergency care settings. Outside of her clinical work, Dr. Barsky has spearheaded multiple quality improvement initiatives, in the hospital and community. In medical residency, she started the educational “Zac Initiative,” to better prepare healthcare personnel, first responders and law enforcement for working with individuals with special needs, from which she has developed a guidebook, ‘Understanding the Misunderstood…’ Dr. Barsky also developed and was awarded patents for her ‘Liability Intervention Logistical Innovation’ (LILI) technology for hospital-acquired infection tracking and control. Dr. Barsky received the “Improving Health Outcomes Award” at the 2016 National American Medical Association Symposium.)
Thank you so much for doing this with us! Before we dig in, our readers would like to get to know you a bit. Can you tell us a bit how you grew up?
Igrew up on Chicago’s North Shore, and I just have to say, my brother and I literally come from a line of hard-working, high-achieving saints. We were truly so blessed and lucky to be raised by such selfless parents, grandparents and inimitable great-grandmother, Bubbie Faye! Their support has taken many forms, from Bubbie’s weekly homemade chocolate chip cookies and chicken noodle soup feasts, to our magical road trips to my grandpa Ralphie cleverly showing me how to parallel park with miniature car demos. However, most importantly, our family skillfully taught us how to prepare for, cope with and grow as the result of life’s many challenges and disappointments.
You are currently leading a social impact organization. Can you tell us a bit about what you and your organization are trying to change in our world today?
Having worked in multiple clinical settings throughout the country thus far in my medical training and practice, I have observed numerous occasions upon which healthcare personnel and first responders have experienced difficulty interacting with a unique and vulnerable population: individuals affected by one or more developmental disabilities. These include Down syndrome, cerebral palsy and the autism spectrum disorder, among others. Upon surveying my colleagues, I discovered that 60% had little to no confidence in caring for an individual with special needs, and even less were comfortable managing an acute behavioral crisis. As you can imagine, such a lapse in communication and understanding can impair any patient-provider relationship, rendering care more challenging and problematic. As the result, while in medical residency, I took action to address this significant yet severely under-recognized healthcare disparity.
The “Zac Initiative,” inspired by my brother Zac’s own heroic struggle with Asperger’s syndrome, is an educational and advocacy project, meant to empower healthcare providers, first responders, neurodiverse individuals, their families and caregivers, in emergency, inpatient and outpatient clinical settings. In addition to providing lectures to medical and first responder faculty, I have more recently written and illustrated a compact guidebook, entitled “Understanding the Misunderstood…,” which I am collaborating with Cambridge Scholars Press to distribute internationally. My goals have been to provide both anticipatory preparation for emergency situations as well as a reference that can be readily accessed as needed during a clinic visit, in a hospital workroom or in the back of a dark ambulance.
Can you tell us the backstory about what inspired you to originally feel passionate about this cause?
Injustice pains me on a visceral level, and it is especially unbearable to witness when the affected parties cannot express or defend themselves. Seeing a frightened autistic patient sitting alone and having a meltdown in the middle of a hospital hallway or a non-verbal patient being excluded from a discussion about his or her own health are experiences that have just… broken my heart. I’m reminded of the look of helplessness and despair on my brother’s face, after having unpredictable emotional outbursts at school throughout his teenage years. Upon returning home, he would say, “I did not want to hurt my friends and my teachers.” Thus, I have been inspired. I have been compelled to find and provide my colleagues (and myself) with evidence-based strategies to help raise awareness about neurodiversity, build a stronger physician-patient bond, facilitate autonomous decision making and lend a voice to those who need it most.
Many of us have ideas, dreams, and passions, but never manifest it. They don’t get up and just do it. But you did. Was there an “Aha Moment” that made you decide that you were actually going to step up and do it? What was that final trigger?
Around the time that I started noticing a pattern in the clinical setting, the tragic news broke about Kayden Clarke, a young man with Asperger’s, who was shot in his home by police during a wellness check for an acute behavioral crisis. Not long after that, another young man on the autism spectrum, Arnaldo Rios-Soto was shot at while playing with a toy that looked like a weapon. The bullet missed him and instead struck and killed his beloved caretaker, Charles Kinsey — a beyond devastating loss. Given these events, who could help but recall Ethan Saylor? This sweet man with Down syndrome had just a few years earlier lost his life at the movies, while officers were attempting to de-escalate his behavioral crisis. It was then that I realized the problem was even more pervasive than I originally thought. The issues that I had been observing among healthcare providers very clearly paralleled those afflicting law enforcement for individuals like Kayden, Arnaldo and Ethan — namely, blatantly insufficient training and preparation for properly recognizing and managing acute behavioral crises among those with developmental disabilities. This was the final trigger. I knew that an educational intervention was necessary, not only to guide healthcare personnel and first responders, but also law enforcement!
Many young people don’t know the steps to take to start a new organization. But you did. What are some of the things or steps you took to get your project started?
First and foremost, lots and lots of research! Research is critical, to better define the problem, to gather feedback from people affected by it and to see what has already been done to try to fix it (if anything at all)! Research can also help you brainstorm “evidence-based” solutions — i.e. existing studies on the subject can guide you on what strategies have worked or could theoretically work well and which ones may not be so great. Next, I formulated a prioritized list of objectives. Then, based on my research, I drafted a comprehensive educational lecture series, on which I sought feedback from my brother, family, peers and experts. At that point, I started approaching hospitals and clinics where I worked, local law enforcement agencies, as well as groups and organizations with similar goals, to offer myself as a presenter and/or to discuss a possible collaboration.
Can you share the most interesting story that happened to you since you began leading your company or organization?
I was really intrigued by the discovery of just how much I actually didn’t know! Going into this, I understood the signs and symptoms of each neurodevelopmental condition, how difficult it can be to recognize them, how often they’re misinterpreted or misdiagnosed as well as how communication challenges serve as a barrier to quality of medical care. However, with persistent digging throughout my literature review, I found various studies done by investigators from around the world, exploring topics I hadn’t thought about before! These articles looked at links between autism and cerebral palsy and the health of other organs, established preventive health guidelines for Down syndrome, recommended tools for pain evaluation in non-verbal patients, etc. etc. etc! So, while we still have a ways to go, I was pleasantly surprised by just how much thoughtful research has already been conducted in the subject area, which could be shared to benefit both providers and patients.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson or take away you learned from that?
Earlier on, I was experimenting with different ways to deliver the lecture series, including a webinar format. So, I planned a test run with a group of my colleagues from across the country. Several minutes into my presentation, I thought it was going great! The slide animations were working smoothly and everyone seemed to be listening very intently — I didn’t hear a peep! I stopped to ask if anyone had any questions, but there was no response. I turned to my phone which had been on silent and was super excited to see it blowing up with what looked like several texts, emails and even a call! But as I opened them, I realized they were all telling me the same embarrassing thing, “we can’t hear you, Lili!” That was awful but also hilarious — I had been talking for several minutes, totally invested in what I was saying and, due to a technical snafu (no, I was NOT on mute!), no one could even hear me, nor could they reach me to tell me that! This experience reiterated something I already knew — that each presentation method comes with its own perks and drawbacks. This was also when I started to think about a universally accessible solution, immune to technical issues, like a book ☺
None of us can be successful without some help along the way. Did you have mentors or cheerleaders who helped you to succeed? Can you tell us a story about their influence?
That’s easy — the mentor has definitely been my mom, and the cheerleader has most certainly been my dad! This has pretty much been true for all of my projects and pursuits. My mom helps me establish a game plan, guides and accompanies me along the way. She is a creative and very determined genius, and as her philosophy goes, you can do anything if it is humanly possible! My dad listens to and endorses our plans. He supplements with reasons for why we should proceed and broadcasts what we’re doing with anyone who will listen.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
I spoke to a local branch of emergency medical technicians (EMTs), as part of a continuing medical education session. A few weeks later, I received an email from one of the EMTs who had attended. She thanked me, mentioning that she employed parts of the lecture while transporting a woman with cerebral palsy. You don’t always get direct feedback, even when you ask for it. So when someone like this medic, who works long stressful hours managing all kinds of traumatic situations in the field, takes the time to communicate that your guidance helped her in her work, it is truly special!
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
Politicians should lobby for local and federal legislation mandating sensitivity and neurodiversity training, adapted for healthcare personnel, first responders and law enforcement. Especially given recent events, the importance of such education cannot be debated. Of course, legislation can take an extremely long time to pass. In the meantime, we as a community can take steps to help this problem. First and foremost, we should all take the initiative to educate ourselves! Familiarize yourself with developmental disabilities, avoid rushing to judgment and learn how you can be an advocate. Also, be on the lookout for signs of victimization of vulnerable populations. Trust your intuition and if you see something, do consider saying something.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
- Not everyone will be on board with your mission. Many won’t. It’s easy to get discouraged and second-guess yourself when a colleague or company with seemingly similar goals passes on your ideas. I’ve been shocked and disappointed, more than once. After all, how could they not see the importance of this? Really? There are many factors that determine someone else’s willingness to participate — ignorance, difference in priorities, insecurity in their own abilities and future! But, whatever. As I’ve learned, this type of speculation and dwelling on rejection is just a waste of time and energy. Don’t let other peoples’ opinions and decisions get in the way of your goals or affect your passion about your idea. There are plenty of other companies/entities/individuals to consider, who likely have more to offer, if a partnership is what you desire. So, expect rejection and/or criticism, don’t take it personally and just move on.
- The final product may take on a completely different form than your original vision. As I mentioned, when I first started my initiative, I based most of my planning on recognition of developmental disabilities and communication strategies. I didn’t realize that there was a whole body of literature on other aspects of care I was never aware of! So as you delve deeper into your venture, be open to discovering things which can totally transform the path you take, its final outcome and the populations your organization can help!
- Set “micro-goals” on the way to achieving your larger ones. “Start low, go slow” is my favorite motto in clinical practice. I also find this concept to be very applicable to projects like these! If you try to do too much too fast, the work can be unmanageable and you can miss critical things. Recognize that the best way to achieving your larger goal (s) is often an incremental process, based on multiple smaller steps.
- Ask questions, loads of them — especially the tough ones! This may sound cliché, but medicine and engineering are based on a central idea: to effectively solve a problem, you really need to seek out and address the deepest roots of it. It’s not just applying a band-aid to the outward symptoms; it’s taking time to really understand and target the underlying condition (s) that precipitated them. Similarly, asking questions is integral to achieving your social impact. Ask experts and affected people why they believe the problem is happening, so you can identify what your organization should specifically do. Ask your teammates and yourself if your current plan seems to be working, so you can make adjustments as necessary.
- Self-reliance! If you want to get things done, you must ultimately be able to depend on yourself. I can’t recall the last time that I’ve worked on a project, video, etc. and not been disappointed by at least one member of my initial team. I would say this has been true since junior high. It’s not always a malignant or lazy personality — people can drop out suddenly because of a personal issue, change in circumstances, etc. They can even change their minds about the idea! And for various reasons, the work that they do may not align with what you expected. So yes, do strive to recruit and maintain a stellar, trustworthy and happy team. However, at the same time, know that people are unpredictable, and do some contingency planning accordingly. Namely, think about your plan B, in the unlikely but not impossible event that your teammates abandon the project.
If you could tell other young people one thing about why they should consider making a positive impact on our environment or society, like you, what would you tell them?
Oh, there are so many reasons I could give, but I’ll just say this: If what you do helps even one person, you’ve already made a world of difference. Seeing all the moving parts come together to bring your ideas to life can be one of the most exhilaratingly rewarding experiences. The process of creating something is also incredibly fulfilling. You get to interact with people you might not otherwise cross paths with and develop leadership, team-building and critical thinking skills that can be very useful in all of your daily work!
Is there a person in the world, or in the US with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
Given our current social distancing restrictions, just having the opportunity to eat out again would be amazing, in and of itself! I think a meal with Larry David would be a lot of fun. Not only would the conversation be hysterical, but I would love to hear more about his process and discuss possible ideas for future ‘Curb Your Enthusiasm’ episodes!
How can our readers follow you online?
I am most active on my Facebook and Instagram accounts. I will also occasionally share updates on Twitter, though as I always say…why tweet when you can squawk?
Facebook: Lili Loni Barsky
Updates about my book, which is now available in print and digital formats, are available on the publishers’ website:
This was very meaningful, thank you so much. We wish you only continued success on your great work!
Thank you so much, Penny!! This has been a pleasure and a privilege.