It’s funny how a thing takes on a life of its own. You may begin a project with one idea in mind, and then something else—something unexpected and better—happens instead.
Last month an infographic made its way around social media as part of a disability awareness campaign. Four images (shown above) reflect the differences between exclusion, segregation, integration, and inclusion. While most of us recognize and condemn both exclusion and segregation, we may find it harder to figure out the distinction between integration and inclusion. After all, integration has long been seen as the answer to segregation; organizations and institutions should open their doors to allow people of all races, genders, and abilities to participate in a fully integrated environment. The infographic suggests, though, that even when we integrate people who are different from us into our midst, they remain defined by their differences. We may design special programs for them or create special classroom environments where they can learn with others who are also different in some way. This in itself is not a bad thing—special accommodations are often necessary to make many kinds of participation possible—but integration is not the same as full inclusion. The difference between them is that integration makes space for others to do their thing, while inclusion requires everyone to participate. Integration provides opportunities for others, while inclusion changes everyone.
In an earlier blog post I wrote about an idea I had to set up weekly half-hour meetings for Martin and Rabbi Alex, even though Martin is not working on the things most B’nai Mitzvah kids work on and meet with the Rabbi to discuss. It occurred to me that meetings with the Rabbi could become part of Martin’s routine, and I figured that as the meetings become important to Martin, so too would Rabbi Alex. I imagined that the meetings would help Rabbi Alex get to know Martin and that their relationship might grow over time as Martin becomes an adult member of Beth El. At bottom I knew that the only way for Rabbi Alex to really understand Martin would be to spend time with him—while Martin has almost no social skills and no real interest in conventional social interactions, he will bring a person into his world if that person is present on a regular basis, and more importantly, if that person is patient and observant enough to come along. So the weekly meetings commenced, and something special happened.
Martin loves the computer. He loves to look at things on the web—trains mostly, but other things, too. If something piques his interest, he will follow it down the internet rabbit hole, where he will discover, and become intrigued by, all manner of user-generated content. His tendency to become obsessed with ideas and visuals, combined with his lack of understanding of social rules, means we have to keep an eye on him and put limits on his computer time. We established at the outset that Martin gets to choose how he and Rabbi Alex spend their weekly half hour together, and almost immediately he began to request Rabbi Alex’s laptop. Each time they get together Rabbi Alex watches as Martin surfs the internet and collects videos and images and music files. He laughs with him as they watch silly videos that I might frown over (because I am the Mom), and in this way they have become conspirators.
A month or so ago Martin started to request meetings with Rabbi Alex. He did this one day by asking his sister Bea to create a calendar for him. This is Bea’s first year of college—she lives on campus, and Martin misses her very much. When she visits, he often asks her to “write” for him: he usually dictates long lists of Thomas trains, but this time he asked her to make a calendar. “No College” featured prominently on many days. Several overnight stays at a “Hotel” also made an appearance. He assigned gifts to himself on particular days (like “Take Along Daisy” and “Trackmaster Philip” and “Tugs VHS”), and every day of one whole week was assigned to “Rabbi Alex.” He then started to request “Rabbi Alex’s Office” anytime we went to shul. One Shabbat morning Martin saw Rabbi Alex on the bima and called out “Office” (because of course the rabbi should stop what he was doing and join Martin on the computer in his office immediately). He now walks right up to Rabbi Alex, puts his hands on Alex’s shoulders or arm, and discusses (out loud—with words) which day exactly they will be getting together.
Martin knows Rabbi Alex now. He looks forward to their meetings. This small social interaction has made a big difference for him. I have been so focused on Martin, however, that I didn’t immediately recognize that Martin has also been making a difference for Rabbi Alex, for the Beth El office staff, and for many other people in our shul community. They have been changed by his presence in their lives.
One day a few months ago Martin decided to bring a new DVD to his meeting with the Rabbi: “World Class High Rail Layouts,” a series of videos featuring elaborate model railroads. Unfortunately, Rabbi Alex’s laptop does not accommodate DVDs, so we went on the hunt for a computer that Martin could use. We ended up in Debbie’s office, and Debbie was more than happy to allow Martin and Rabbi Alex to use her computer to watch the DVD for part of their session together. She told me later that she enjoyed watching it herself, as her dad was a model train enthusiast and the videos brought back happy memories for her.
Not long after that Martin became obsessed with getting rid of a particular box set of model railroad DVDs. For reasons that are not exactly clear, he was determined to get these DVDs out of our house. I suggested that he might store them in Debbie’s office, where she could keep an eye on them and he could watch them whenever he was there. He liked this idea, and so did Debbie. Then a funny thing happened. Now when we arrive at shul for meetings with Rabbi Alex or for Steam Team sessions, Martin will often march right into Debbie’s office, sit down with her, and start watching DVDs or surfing the internet on her computer. I was concerned about this at first, worried that he was interrupting her work, but Debbie reassured me that it was just fine. And as a result, they have developed a rapport. She is happy to share this time with him, and he listens to her and follows her instructions. He is clearly very comfortable with her, and she is delighted with him.
I see the beginning of something happening here. It’s not special programming for autistic kids or even one special Bar Mitzvah service for Martin (though both of those things are happening). We made the decision just to show up—to come to shul on Shabbat so that Martin can practice parts of the service, to come to shul once a week so that Martin can spend time with Rabbi Alex, to come to shul on other days to work with Merril or to meet with the Steam Team. Our goal has been to help Martin feel comfortable at Beth El, but because we keep showing up, others have grown more comfortable with Martin.
This gradually changing environment is wonderful for our family. The more we show up, the easier it is to keep coming back. I find that I can actually exhale when we are at services. Things that might have caused me stress before no longer worry me—like that Shabbat morning when Martin drank all the grape juice in the cup, not just the ceremonial sip. My first impulse was to get up and intervene, but then I noticed that the congregation was laughing and smiling as we sang the Kiddush blessings; they were all enjoying Martin’s enthusiasm. Daniel approached me after the service ended and said, “You know, Martin is actually following Jewish law, which says that one should finish every drop of wine or grape juice in the cup. He’s doing it as it should be done!”
Our family benefits from the support of our Beth El community. Martin benefits from the opportunity to develop social bonds with others. And each time he connects with another person, he makes a positive difference in that person’s life, too. This is the unexpected benefit. And this, I think, is what inclusion looks like.