By Limor Hartman and Debbie Shemony
The Newbie’s Perspective
I found myself in a packed room at my first BBYO International Convention watching a popular filmmaker and YouTube creative lead a workshop on, “Ideas are easy, execution is everything.” There wasn’t an empty seat in the house and teens were sitting shoulder to shoulder enthralled by our dynamic speaker.
All of a sudden I heard someone shout out an expletive. As one of the few adults in the room, I wasn’t sure how to react. Do I turn around to see who did it? Do I ignore it? Luckily, the 300 teenagers I was surrounded by in the room knew exactly what to do – nothing. They said nothing and they did nothing. When I heard another expletive shouted out again a few minutes later, they did nothing again.
Within a few minutes, I surmised that the person shouting out the expletives during the workshop might have Tourette Syndrome (TS). TS is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. I knew what it was but I didn’t have any experience working or engaging with individuals who have TS. What was amazing to me is that the teen with TS was just that … a teen with TS. He was sitting with his friends, participating in the workshop, laughing at the speaker’s jokes, and just being himself. And everyone around him was SUPER COOL with that.
I was impressed. I needed to find out more.
The Parent’s Perspective
My son Ben* is a ninth grader. He appears a shy and quiet person. Ben has dyslexia, attention issues and low working memory which together affect him socially. For example, at school, he completes his classwork by the end of the period, while other students have time to socialize. This dynamic leaves Ben on the social fringe of his peer group, feeling isolated.
Like us, Ben has sought inclusiveness and acceptance for years. We live in a small Jewish community with few options. When he first joined BBYO, naturally, we were nervous. We wanted a warm and inviting place that offered him great choices. Choices in activities. Choices in friends. Choices to go at his own pace. He is getting that and more. He loves feeling part of something bigger.
I could sense it was a good fit immediately after Ben joined. For me, one of the most important things was being able to ask questions and having them answered quickly. It is having access to leaders and professionals that makes parents like me feel more relaxed and at ease with the decision to let our child go to an overnight convention or sign them up for a summer camp. I can’t stress enough how important an open line of communication is to parents of teens with disabilities.
The Teen’s Perspective
I am more than included. I am embraced at BBYO. It’s like my TS add to my relationship with my friends. BBYO changed everything for me. In middle school I was bullied pretty badly, and didn’t have close friends. Here, I was invited to a program and felt welcomed from the very beginning. Within a few minutes, I found myself explaining some of the outrageous tic I was blurting out and they just accepted me (and still accept me) for who I am.
When I walk into a local meeting, and I say something or make a movement, I don’t worry about others’ reactions, I just ‘do me’. It’s freeing to know that anywhere BBYO is a safe place for me.
My condition is obvious to others but for teens with invisible challenges, it can be very different. For example, one of my chapter brother has Asperger’s and at first, my other brothers didn’t know what to say because his answers were short and didn’t flow. I explained that he just wants to belong, like us, but that he doesn’t require continuous verbal interaction. He feels good just hanging out. My friends better understands Asperger’s now and, like my TS, it’s not important. Like all new members, we are giving him the time to show his colors.
I hope I find a group of friends in college that don’t question my TS and allow me to be myself. That’s all I really want.
The Professional’s Perspective
On February 18th, I was invited to the White House to take part in a conversation on Jewish Disabilities Awareness and Inclusion in our community. In his opening statement, Matt Nosanchuk, White House Associate Director of Public Engagement and Liaison to the Jewish Community, recognized the longstanding tradition of the Jewish community to strive to provide ‘room’ for each person who wants to be involved. Following that, panel speakers shared current issues they encounter either personally or professionally as well as how they are engaged in the community to develop greater awareness of inclusion.
While some barriers to inclusion are lower now there is still much to be done.
The call for action at the concluding remarks at the White House meeting reminded me of the theme I heard at our International Convention (IC), just a few days earlier, “it starts with us!” We are individually and collectively responsible to support every member of our community, because together, we are stronger. This growing awareness to inclusion was formally acknowledged in the recent addition of the term ‘disability’ in our mission statement. This symbolic change reflects the active efforts to inclusive culture embraced by our community of professionals, teens and lay leaders.
As Jewish Disability Awareness Month concludes, I am excited about the $300,000 grant BBYO just received to invigorate our commitment to meeting the inclusion needs of the Jewish teen community at our Summer Experiences. This summer, members and staff will be involved in awareness training on disabilities through active discussions, guest speakers and sharing of current member experiences. Throughout the program, teens and staff alike will be encouraged to reflect on their experiences and teach one another. We look forward to an immersive summer experience that will reverberate within each member at their local community.
Limor Hartman is NRE Director of Inclusion and Debbie Shemony is Senior Director of Communications for BBYO.