How a student-led non-profit has inspired a global movement
Reprinted from the Loneliness and Social Connection issue of Visions Journal, 2019, 14 (3), pp. 31-33
I always believed that my daughter, Lili, was special, but I had no idea that her life would inspire a movement that has touched millions of children and teens all over America and around the globe.
Lili Rachel Smith was born with Apert syndrome, a rare genetic disorder that causes some of the skull bones to fuse prematurely. This prevents the skull from growing normally, affects the shape of the head and face and can cause fusing or webbing of the fingers and toes. In short, Lili looked different from other kids.
When she was a little girl, Lili had friends and playdates, but as she got older, she faced a number of social challenges. Grades 6 through 8 were the toughest time for her, as the invitations to parties and sleepovers dried up. Feeling excluded from any friend group at school, she found herself dreading lunch; often, she would retreat to the girls' bathroom and call me to pick her up.
Lili was experiencing social isolation, a term that until that point I had heard only in reference to senior citizens. Social isolation is different from bullying; it is a feeling of being left out, invisible and without connection to others. This feeling impacted Lili's motivation to do well in school. Ultimately, our family decided Lili would do better being homeschooled. It was a very tough decision and not one we would want other families to have to face.
Tragically, Lili passed away unexpectedly in her sleep as a freshman in high school in the fall of 2009, due to medical complications associated with Apert syndrome. At her memorial, teens who had known her as a classmate in middle school came to realize how excluded she had felt during those years. They wanted to do something to honour her life. In 2010, together with Lili's classmates, we created a non-profit organization called Beyond Differences, with the aim of raising awareness about social isolation in youth. Within a few short years, what started out as a tribute to Lili had touched a nerve in middle schools* all over the country.
Research indicates that social isolation has a major impact on self-esteem, health and academic performance. A 2013 study showed that social isolation can contribute to conditions such as depression, loss of sleep, eating disorders and poor cardiovascular health.1 In 2016, a national survey revealed that 20% of American middle-school and high-school students had trouble making friends, and nearly 50% did not participate in extracurricular school activities.2
What is Beyond Differences?
Beyond Differences is the only student-led non-profit organization and social justice movement dedicated to ending adolescent social isolation. We believe that all teens should feel included, valued and accepted by their peers. Exclusion should not be an accepted part of middle-school culture, and students can lead the way to make meaningful change in their community.
Our Teen Board of Directors is made up of about 100 high-school students who are trained to go into middle schools and talk to students—peer to peer—about what social isolation is and how to combat it. The feedback we've received has been startling. We've learned that most teens have experienced social isolation at some point in their lives, whether during school, at events outside of school or as a result of social media posts. For example, we hear often that feelings of social isolation are common when an individual discovers they haven’t been included in a party or event—and peers post photos of the event on social media.
Our organization saw a huge need to help teachers, school counsellors and students create more inclusive, accepting communities at their schools. We’ve developed curricula, programs and national awareness days—what we call our Positive Prevention Initiatives—with resources that schools can request online and receive free of charge. Our goal is to change the culture of middle school to encourage a positive, more inclusive environment.
In 2012, we piloted our first No One Eats Alone™ Day in just a handful of schools in Northern California. The day encourages students to sit with classmates they don’t know and include students sitting alone. Our Teen Board, along with middle-school ambassadors (students who either volunteer or are recommended to take a lead role in our programs), helped facilitate the first event. We had widespread print and broadcast coverage for our first No One Eats Alone Day event, and we were blown away by the response from the students, school staff and administrators who attended. Many students opened up about their feelings of social isolation at school, and many adults (teachers, administrators, even reporters) recalled having similar feelings during middle school as well.
The program has grown each year. In 2018, we sent over 2,200 schools a free backpack filled with everything they needed to hold No One Eats Alone Day: curriculum for in-class exercises and discussions about social isolation, armbands, posters, balloons, conversation starters and the supplies and instructions for a collaborative art project. In 2018, the art project was a five-foot-tall tree with paper apples on which students wrote their personal pledges to end social isolation. In 2019, the apples have been replaced by hearts and leaves.
To combat negative beliefs about cultural and religious differences—a key factor in social isolation—we launched the Know Your Classmates™ program. For this initiative, Beyond Differences developed a unique curriculum to teach students about personal identity and appreciating differences in others, with the goal of increasing acceptance and building strong communities within schools. Know Your Classmates focuses on breaking down barriers around culture, faith, family traditions, gender identity, immigration status and many more facets that make us who we are.
Knowing the effect that social media can have on how socially excluded we feel, we created Be Kind Online™ to nurture healthy relationships and combat social isolation online. This program teaches students how to spot social isolation in the online environment, how to respond to digital gossip and how to be authentic and true to themselves online. Be Kind Online includes lesson plans, PowerPoint presentations, articles, links to videos and worksheets for in-class discussions and interactive exercises. One of the lessons, Standing Up to Negative Online Behaviors, includes descriptions of realistic scenarios of online cruelty for small groups to discuss. Another exercise has students watch a talk and discuss and write about the power of "likes" on social media.
In 2018, more than 5,000 schools in all 50 American states used one or more of our Positive Prevention Initiatives. As Beyond Differences has grown in the US, we have begun to receive interest and requests from schools and communities across Canada and all over the world. We've discovered that the issue of adolescent social isolation is universal. In 2017, for example, delegates from South Korea met with Beyond Differences to help address the problem in their own country. For schools outside of the US, Beyond Differences has provided comprehensive teacher guides online.
All of our resources, materials and program support are provided to schools free of charge, no matter where in the world our participants live. Beyond Differences does not receive any state or federal funding for these programs. We rely solely on the generosity of our private and corporate supporters.
I know Lili would have been proud of the work her life has inspired. We are happy knowing that we have made such an impact, but we still have plenty of work ahead of us.
We remain committed to ending social isolation in youth and look forward to a day when inclusion is the norm. For more information, contact www.beyonddifferences.org.
*in America, middle school is the common term for a school intermediate between elementary (primary) school and high (secondary) school. If they exist in BC, they may be called middle schools or junior high schools.
About the author
Laura and her husband, Ace Smith, founded Beyond Differences following the unexpected death of their daughter Lili Rachel Smith in October 2009. With over 35 years of experience running and consulting to non-profit organizations, Laura is passionate about bringing awareness to the issue of adolescent social isolation
Pantell, M., Rehkopf, D., Jutte, D., Syme, S.L., Balmes, J. & Adler, N. (2013). Social isolation: A predictor of mortality comparable to traditional clinical risk factors. American Journal of Public Health, 103(11), 2056-2062. doi: 10.2105/AJPH.2013.301261.
National Survey of Children’s Health (NSCH). (2016). See www.childhealthdata.org/learn-about-the-nsch/NSCH.